Welcome to my nifty Dreambook, a free guestbook service from New Dream Network and the DreamHost!If you have a minute, please add your entry to those below by signing my Dreambook!
| Name: | Marla |
| E-mail address: | RJLORMAND@HOTMAIL.COM |
| Location: | Las Vegas |
| Comments: | I have previously posted regarding my son Scott. He passed away July 22,2009 at the age of 34. He is leaving behind many people who loved him including his 2 daughters Morgan 15 months, and Macy 11 years.He was diagnosed 6 years ago and did well for 5 years.His oncologist called us Christmas Eve 2008 to tell us we needed to return to a tertiary treatment center as Scott had a recurrance of his cancer. Within just a few months his only tumor (the size of a small egg) had spread to every major abdomial organ and structure. His last CAT SCAN showed tumors numbering 50-75 with the two largest noted in his liver and kidney. There are simply no words to capture our feelings of sorrow and loss.I hope and pray for each of you who are struggling with this diagnosis and may GOD BlESS EACH OF YOU. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Kara Palmer |
| E-mail address: | kjpdoe@gmail.com |
| Location: | Lincoln Ne |
| How did you find this page?: | Looking for closeur |
| Comments: | Hello, I am a 32 year old Widow now...my 34 yr husband died of ACC...In 2002, Duane was diagnosed with Sarcoidosis, and took prednisone faithfully, until he couldnt stand it no more.
Duane worked for the university Police dept, and walked an average of 5-8 miles per day...in April 2008 his feet and stomach began to swell, and could not understand why..he thought he ate too much...I forced him into a DR appt..He called me at work and said his blood pressure was 225/200 and his pottasium was 2.4...He checked in at the ER...his second day after being admitted into the hospital, duanes lungs filled with fluid within a matter of minutes..Pulminary edema flash is what they called it. Duane was on life support for 4 days in lincoln, until they came to the conclusion that the sack of sugar sized tumor on his right kidney, in his liver, and lungs there were numerous nodules and in the vena cava. He was flown to the Omaha Med center where he lay on life support 9 more days. Surgery was successful...healing was not. Duane wore a wound vac for months, once he started chemo it finally healed... My tears are too heavy to finish the story...but Duane and I married, in our home, on our couch after 14 years together, and 18 days later, Duane passed on May 2 2009, leaving behind me and our 10 and 11 yr olds. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Michele |
| E-mail address: | Meshellmybell08@aol.com |
| Location: | Long Island, New York |
| How did you find this page?: | since Dx in 2003 |
| Comments: | Just wanted to give hope to all newly diagnosed ACC patients..I had a large tumor removed from my left adrenal they took a little of my kidney and 1 rib..I was told I had stage ll cortical carcinoma..I continue to go to Sloan Kettering cancer center for my routine cat scans every 3-6 months..It has now been 6 years and remain cancer free..I do believe every case is different becasue of how rare this cancer is...also if you have a good surgeon as I did there is hope..Everything I read on the internet was negitive and scared me more then the cancer did..So this web page Arlyn has for us is great because we have all been threw it and can tell our stories..Make sure you have a Oncologist that you can understand and have open communication with..There is hope for all of us.. |
| I am: | a survivor. |
| I will be praying for your: | peace. |
| Name: | RHONDA SCOTT |
| E-mail address: | DYKE_JUST_DOIN_IT@YAHOO.CO.UK |
| Location: | ENGLAND |
| How did you find this page?: | SEARCH ENGINE |
| Comments: | MY BEST FRIEND HAS ACC AND FOR THE LAST YEAR I HAVE BEEN SEARCHING TO TRY TO FIND OUT MORE ABOUT THIS ILLNESS SHE IS DOING WELL AND IS BACK AT WORK BUT NOW IS FACING TRAIL DRUGS AS CHEMO HAS FAILED I FOUND A PRODUCT CALLED ZARAS HERBAL TEA PLEASE ANYONE WHO IS READING THIS LOOK IT UP ITS BY A LADY CALLED DUANNE ALEXANDER METETANE IS A DRUG USED FOR DOGS AND HAS SHOWN EFFECTIVE IN ACC SO IS THIS TEA BUT HAS ACTUALLY REMOVED ALL CANCER AND ALSO THE LADY HAD CANCER HERSELF AND TOOK IT 12 YEARS LATER SHE IS CANCER FREE OTHER TESTOMONIES IN HER INFO PACK HAS BEEN GREAT 1 LADY 4 WEEKS TO LIVE STILL HERE 4 YEARS ALSO CANCER FREE ALL CANCER GONE DOCTORS OUR NOW LOOKING INTO IT AT THIS STAGE AND WITH THIS CANCER ANYTHING IS WORTH A TRY GOD BLESS EVERY ONE AND I HOPE THIS HELPS HOPE IS OUT THERE ITS JUST A MATTER OF FINDING IT AND I PRAY WE JUST HAVE MY BEST FRIEND IS MY WORLD AND I WONT STOP TRYING FOR HER |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Patrick Green |
| E-mail address: | patrick@hightech.net.au |
| Location: | noosa, queensland |
| How did you find this page?: | search |
| Comments: | My little girls has her best friend in the hospital right now. Misty my little girl has been best friends with this precious little girl names Olivia. Olivia 3 days ago was diagnosed with a tumor in the adrenal gland. She turned 1 year old yesterday. She is having a scan today to determine the extent of the 14cm tumors damage and condition. I am so sad for Olivia and my daughter as well cause it is her friend. I am now concerned for my childs well being too. I know it is a bit selfish but I am now concerned for my daughter as well since she will be exposed to the after effects of chemo on her friend at her age is there any dangers from radiation or chemicals that are given to Olivia? Should I be preventing my daughter from being around Olivia since olivia now will develop potentially all kkinds of other issues that could be exposed to my little girl. I feel horrible for thinking this but I have to protect my little girl as best i can and tough questions need to be asked now and I am shattered from worry. This poor little girl has so much to go through now and I want nothing more than my daughter to be there for her as well as my wife and I for our friends. But I am so worried about exposing my daughter at 12 months old to uneccesary risks just to have an appearance of support. Someone please help me to know what to do and how to help our friends in thier time of need. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Nancy Bernthal |
| E-mail address: | oceanfan_1@yahoo.com |
| Location: | IN |
| How did you find this page?: | ACCompassion group |
| Comments: | I was diagnosed Jan 4, 2008, and had surgery to remove my right adrenal and kidney 2/21/08. Thew oncologist has said it was "STAGE 3, ATLEAST". So far I have a few very small suspicious-looking spots on my lungs, but they haven't told me that they are mets. I am taking Mitotane, but have only gotten up to 2 grams, and I have been on it for about 3 months. I am hoping that my next scans are unchanged. I am still pretty new at this thing, but I have been learning a lot about the disease, and I am trying very hard to keep it from consuming my thoughts and having more influence over my life than it deserves. It has helped me to priortize differently, and that is a good thing. There always is a gift in there somewhere, it is just sometimes we are hard pressed to find it! If anyone wants to talk, please feel free to e-mail me! |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Kelly Jones |
| E-mail address: | kaj33@bigpond.com |
| Location: | Gold Coast, Australia |
| How did you find this page?: | |
| Comments: | Hi,
8 days out from turn 40 years old, I was diagnosed with ACC (22nd Dec 2007), great Xmas and birthday present, had surgery to remove a 16cm tumor from my left adrenal gland on 23rd Jan 08. The doctors have told me it was encased in itself with no other organs removed at this stage. About to have my 2nd third monthly scan, hopefully all goes well. I am having no treatment at this stage we are are taking it scan by scan. Thank you for providing a web site with information on ths rare cancer, I too have found very little info on ACC. Everybody thinks how lucky I shoud feel to be 1 in 2 million, at times I don't, it has been a very interesting and confronting time and journey. Thanks Kelly Jones |
| I am: | newly diagnosed. |
| I will be praying for your: | sanity. |
| Name: | Helen |
| E-mail address: | mrskornick@aol.com |
| Location: | IL |
| How did you find this page?: | search |
| Comments: | My daughter (age 21) was diagnosed 3.5 weeks ago and is recovering from surgery where they removed her left adrenal gland, her kidney due to a bloodclot in the vein and a 12 cm functional tumor. I have also been doing searches for information about options and even the cancer centers are vague. its very discouraging until I listen to my daughter talking with friends and loved ones and insisting that this is only an inconvenience and she will be going back toher life as soon as they get the treatment plan together and she completes it. She is my inspiration and I hope I can be her rock through this.
I noticed that there are no responses to the inquiries about our host or to any of the other entries. Any clue to where to get more of these answers we are seeking? Feel free to email me if you have any updates on your loved ones. I am looking for hope and also information. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | CArmon |
| E-mail address: | carmiekins73@yahoo.com |
| Location: | WI |
| How did you find this page?: | |
| Comments: | My sister, Becky, email that was elctrologistbecky@yahoo.com had some posts on this site. I google any info on her that I could to keep her close to me. She passed away this week on May 15th, 2008 . It was 6 months and one day from her diagnosis of cancer on her liver , her 2nd bought with cancer. She passed away so peacefully. I just wanted any of you who interacted with her to know. She was a wonderful sister and a friend. She had her deep faith, sweet smile , and humor to the end. |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | Suzy |
| E-mail address: | sweetlillyrose22@aol,com |
| Location: | AZ |
| How did you find this page?: | |
| Comments: | Thanks for your blog. I found it while looking for information on adrenal tumors. A sweet friend of mine is having surgery tomorrow, 4-21-08. She has a football size adrenal tumor. When reviewing her xrays/scans they found she has a tumor on her liver as well. I'm not sure if they both comprise the "enormous" tumor or not.
Please keep her and her family in your prayers. Thank you |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Peggy |
| E-mail address: | peggy@georgeventures.com |
| Location: | SanAntonio, TX |
| How did you find this page?: | searching the web |
| Comments: | My husband was diagnosed with ACC in August 2006 at which time they removed his left adrenal gland. He has had scans every 6 months and on his last scan in December they found a couple of tumors on his kidney. They are running tests on him to see if he is a candidate for the lysodren (mitotane). He will find out tomorrow if he can take the drug. Has it really helped anyone? Did you have alot of side affects. He also has type 2 diabetes but is not on insulin |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Angie Seward |
| E-mail address: | Samuel.Seward@FedEx.com |
| Location: | Muscatine |
| How did you find this page?: | My dad |
| Comments: | My brother has this type of cancer. He is only 27. They do not give him long to live. He is in stage four. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Sarah |
| E-mail address: | gandalf702@gmail.com |
| Location: | Seabrook, TX |
| How did you find this page?: | web search |
| Homepage URL: | http://www.prayforkelsey.com |
| Comments: | Thank you so much for sharing your story on this site. My daughter was diagnosed with Stage 4 ACC at 6 months of age and was not expected to live to see her 1st birthday. She will be 3 next month, Praise God!!! We chose a non-toxic treatment regiment at the Burzynski Clinic in Houston. She receives a daily, in home, infusion of Antineoplastins via a cathetar. This medication works by turning on the P53 suppressor gene, and providing your body with antineoplastins often missing in ACC patients. She is 97% in remission and continues on a positive path. She is not immuno-suppressed, so she is not sickly. She has also never lost her hair. Her white count is fine. In fact, other than the fact that she has a cathetar and pump attached to her, you would never know she was not the same as any other healthy child. She eats well, sleeps well, plays hard, and keeps me on my toes. Her development is normal-advanced. I hope this information can help someone else searching for a possible treatment option. We were initially offered the same Mitotane + 3 other toxic chemo drugs as most others are offered. We refused this, much to the dismay of the doctors at MD Anderson Cancer Center. You can see pictures of my daughter at her website. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Zoe Teale |
| E-mail address: | zowie_r@hotmail.com |
| Location: | Wiltshire, UK |
| How did you find this page?: | |
| Comments: | Hi there! I am currently recovering from surgery to remove a 13.5cm adrenal carcinoma and am due for a PET scan next week followed by treatment with Mitotane. Did you ever take the Mitotane? I saw that you had opinions from a huge range of docs on the matter back in 2002 - what happened? It's amazing to have found someone out there who knows what I'm going through - you've done an amazing job with the web site. I'm 34 and am married with a 2 year old daughter. Your recent trip looked incredible - I'm so looking forward to being able to travel again. If you could tell me anything you know about Mitotane or anything else that you think could help I'd be so grateful. Much love and best wishes, Zoe |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Patricia Shanny |
| E-mail address: | pshanny@optonline.net |
| Location: | Fishkill, NY |
| How did you find this page?: | Benn following the sun for 2 years |
| Comments: | On Dec. 22, 2007, Ann Danielle Whalen died after more than a two year battle with ACC. Ann had just turned 22 on 12/2. Ann will be greatly missed by family and friends. Please pray for the people of her heart. |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | Lynda Boling |
| E-mail address: | leighannis@hotmail.com |
| Location: | TN |
| How did you find this page?: | internet search |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Kathy Thistlethwaite |
| E-mail address: | kathy@dragonknoll.com |
| Location: | Southern California |
| How did you find this page?: | google search |
| Comments: | Thank you Arlyn! Your site continues to provide us with useful, positive information. My husband, Doug, is now under the care of the City of Hope, and we're happy to report that his 1 year post-surgery CAT scan showed no signs of his ACC returning.
We feel like the tight rope we were on, has evolved to a balance beam, and may become an actual road to recovery... |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Trixie Gomez Dial |
| E-mail address: | trixie.dial@brittany.com.ph |
| Location: | Philippines |
| How did you find this page?: | surf |
| Comments: | Dear Arlyn,
I'm Franklin's daughter Ixi, He is the first cousin of your mom. My mom, Linda was diagnosed with stage 4 Adrenal Cancer a few days ago. She was told that the cancer has spread to her lungs and lymph nodes, we will know on Tuesday what type of treatment will be given. She has finished her PET scan yesterday and we will know by Tuesday what type of treatment will be best for her. I hope that anyone who can offer some advice on any course of treatment to please drop me a line. It has been especially depressing for me because i cannot even see her, she lives there in the US while i am here in Manila. Your site has given me hope after reading other people's stories. It has strengthened me, and i am hopeful again. Best regards! |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Jody |
| E-mail address: | jodybrainerd@hotmail.com |
| Location: | Lonsdale Minnesota |
| How did you find this page?: | surfing |
| Comments: | My now 13 month old daughter has ACC BUT it was a tumor that was found in her spinal cord and the cells matched those of the Adrenal Glands. She has had two surgeries to remove two tumors and has now started Chemo to kill any cells that are left behind and keep forming new tumors. If anyone out there has heard of this same ACC please email me as I am so new to this and after reading some of your messages I wonder if doing chemo will even make a difference in her life. Right now she is back in the hospital because she is not eating or drinking and they are thinking it is cuz of the Mitotane that they are giving her daily. Anyone wanting to learn about my daughter feel free to visit her caring bridge web site. It is www.caringbridge.org/izabellabrainerd
Thank You Jody |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | sharon brown |
| E-mail address: | scarlet089@aol.com |
| Location: | alabama |
| How did you find this page?: | web search |
| Comments: | thank you for sharing your journey. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Jeanette Brindley |
| E-mail address: | nettyb@talktalk.net |
| Location: | LIVERPOOL |
| How did you find this page?: | |
| Comments: | Hi,
I was diagnosed with ACC October 2005 at the age of 43. The tumour had invaded the main artery to my heart. On 18th November 2005 I had open heart surgery and had my left adrenal gland and kidney taken out. I was in intensive care for four days, during which time my son had his 18th birthday. All CT, MRI and PET scans clear up until I started feeling tired, losing hair and hot sweats. Had another CT scan, then on 6th August 2007 was told they had found cancer nodules on both lungs and my liver. I have also recently had a MIBG and Octreotide scans. I have today 19th September 2007 been told by my oncologist that they cannot operate, so they are going to try me on Mitotane on Monday to see if this works. If not they will run Chemo alongside the Mitotane. To be told I will never be cured is something I have to learn to live with. I worry more about my husband Paul, my daughter Kirsty 25, my son David 19 who still lives at home and my two wonderful grandchildren George 6 and Lydia 2. I do hope that the Mitotane works so it will keep the cancer at bay for a while, here's hoping eh! Wish they would do more research. Best wishes to you. Jeanette |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Alexa |
| E-mail address: | athompson@gvmh.org |
| Location: | Clinton,MO |
| How did you find this page?: | yahoo |
| Comments: | Hello
My Mother-in-Law has been dx with ACC this week. It has met's to heart, lungs, kidney, liver, ovary. We have been told that surgery is not a option at this time due to her respitory status. She is starting chemo today or tomorrow. I know what chemo will do but, what should I expect with an outcome. All of the stat's are not that encouraging. At this time she does not have any pain. The only complication that she is having is her respitory status is not very good. She is oxygen dependent, she can walk about 100 ft with out difficulty but after that she needs to rest. This diagnoisis has been very hard for us. Jill (my mother in law) has been extremly healthy and active until 10 days ago. If anyone has any experinces good or bad to tell me please email me or reply this. I need to be prepared for what is next if that is possible. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | diame |
| E-mail address: | engineerdi@yahoo.com |
| Location: | sacramento |
| How did you find this page?: | looking up ACC |
| Comments: | been trying to email you to no avail. Please tell me how to get ahold of you. Thanks |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Gordon |
| E-mail address: | gordongannon@gmail.com |
| Location: | Cork Ireland |
| How did you find this page?: | Surfing |
| Comments: | My Father was just diagnosed today with Adrenocortical Cancer.Stages unsure.He is 76.I'm shattered any email support would be helpful as I really do not know what we are up against
Gordon |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | kim glover |
| E-mail address: | irkimmie@msn.com |
| Location: | ballston, oregon |
| How did you find this page?: | search |
| Comments: | finally an encouraging site about acc! i have been searching and searching for some kind of good news and survivors.
I was first diagnosed with acc 3 years ago and have had 2 surgeries. Everything i have found so far has not been encouraging at all. I am so relieved to hear of so many survivors. It gives me more hope! |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Janine |
| E-mail address: | welsh.girl@Rogers.com |
| Location: | Canada |
| How did you find this page?: | Through ACCompassion |
| Homepage URL: | http://health.groups.yahoo.com/group/ACCkidlets/ |
| Comments: | Hi Arlyn,
I've been on ACCompassion for some time now, and hadn't see you update for a bit; I hope all is well. When I went on to see your guestbook, I noticed several parents of ACC kids have posted. I hope you don't mind, but I am attempting to contact any who might be interested in joining a pediatric ACC board I have just started. As I'm sure you're aware, pediatric ACC patients have some different issues than do adults; and since many cannot communicate what they are feeling, it's vitally important for parents to help one another with thier care, and with advocating for them! Thanks, and thanks also for this wonderful source of information for ALL ACC patients. Janine |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Michele |
| E-mail address: | Meshellmybell08@aol.com |
| Location: | New York |
| How did you find this page?: | It's in my favorites |
| Comments: | Are you O.K. Arlyn??? |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Michele |
| E-mail address: | Meshekkmybell08@aol.com |
| Location: | New York |
| How did you find this page?: | Since "03 |
| Comments: | I noticed Arlyn has not written a blog in a long time. Also I e-mailed ger and never heard back. Does anyone know if she O.K. please let me know... |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | ADAM |
| E-mail address: | bigsnigs@hotmail.co.uk |
| Location: | ENGLAND |
| How did you find this page?: | checking out sites |
| Homepage URL: | http:// following the sun BIG MATT |
| Comments: | Been looking in on this site for about nine months my younger BROTHER found out he had ACC in july 05 ,he had all the meds you talk about and chemo nasty stuff that chemo ,he had his kidney and adrenal gland and a rib removed and the nasty big growth,he didnt know he had ACC until he went for the results of op.He then had another scan and they had found spots on his liver,Matt went back for op on liver in october 05 they couldnt do wot they thought ,thats when Matt had all the chemo and meds ,MATT died in july 06 after a battle ,he always had a smile for you and wos so polite to all the doctors and staff ,Matt is my HERO and WARRIOR i miss him , but his in a better place .STAY STRONG TO YOU ALL . BAMBOO BENDS AND COMES BACK STRONGER AGAINST ADVERSITY BE LIKE BAMBOO MY FRIEND. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Laura Riggins |
| E-mail address: | laurariggins@hotmail.com |
| Location: | Greensboro, N. C. |
| How did you find this page?: | surfing |
| Comments: | My husband was diagnosed with ACC 3 years ago. He had a very large tumor (18 centimeters)removed along with his adrenal gland. They told us chemo didn't really work on ACC. We did CT scans every 3 months. After a year small spots showed on his liver and they said it as metastases from the ACC. He takes the folowing antioxidants every day and is still well 2 years after they told us it had spread to his liver. We will do a scan this April to see if he is well. I hope that someone else will benefit from this list.
ANTIOXIDANTS 1. Muscadine Grape Seed Extract, 590mg. this is a new product on the market, it is the strongest grape seed extract available. It can be purchased thru La-Bleu Corporation, Le-Bleu is a customer of Sea Star, they are located in Advance, NC their phone # 1-336-998-2894, their product is available in most Drug Stores also, however, Le-Bleu will send brochures if you call them. Other grape seed extracts 50mg can be found in all drug stores. 2. CO Q10 (Q-SORB) 200 mg available in most drug stores – 1 day. 3. Green Tea Extract 315 mg, available in most drug stores. 2 day. 4. Soverign Silver, Promotes a healthy immune system, it is available thru Natural-Immunogenics Corp. 3265 W. McNab Road Pompano Beach FL 33069 Phone # 1-888-328-8840, sales@natural-immunogenics.com 4 tbsp. day 5. Yogi Tea (De-Tox) promotes healthy Kidney and Liver functions, available in most drug stores and grocery stores. 6. Sam-e, promotes joint comfort, mood support, Liver health 400mg. available in most drug stores. 1 day. 7. Liverite, Liver Aid. Promotes healthy Liver functions. Available in most drug stores. 6 a day Dosage instructions will be listed on the bottles or cartons. IMPOPRTANT NOTE; These Antioxidants are not intended to replace PRAYERS, Jesus said that to those who believe anything is possible. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Becky Wintrone |
| E-mail address: | elctrologistbecky@yahoo.com |
| Location: | WI |
| Comments: | Hello, I had a PET scan of my right lung, and as of now the spot didn't show any activity. Mt Oncologist is very hopeful. I was also went and saw my Endo...he told me my hormone levels are perfect, so I don't need to see him any more, unless something else comes up.
Take care, God Bless You all! Becky |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Amber E. Bell |
| E-mail address: | iwbell@aol.com |
| Location: | Fort Wayne, IN |
| How did you find this page?: | A Friend |
| Comments: | Just wanted to share my story. I was diagnosed with ACC in December 2005. I developed Cushings and Conns Syndrome, and finally after about a week in the hospital, my doctor decided to do a CT scan of the abdomen. Before surgery they were telling me that my tumor was benign, but of course two weeks after surgery I find out that it had cancer. I did not recieve any other treatments, other than surgery, and my tumor was about the size of a soft ball. After surgery my other adrenal gland stopped working and has yet to regain function. I have now started to show signs of Addidsons, but am working with my endocrologist to resolve this. I have also had new symptoms within the past two months, such as abnormal menstraul bleeding and when I get a cut, it is like my blood has thinned out, and I bleed very heavly. My oncologist has not been of much help at this point, he just is not infomed about ACC. I had a PET scan last week, which showed enlargement of my Thymus gland, but again, they can not explain why. So to make this long story short, I have contacted the Cancer Treatment Center of America in Chicago, and I am hopeful that they can help. If anyone has any advice for me at this point, I would greatly appreciate it. I am 31 years old and the mother of 2 small children. I do not plan on letting this cancer take my life. I am hopeful and have faith in GOD. Best of luck to all of you who are fighting with this rare cancer, peace be with you. |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Deena Edmonds |
| E-mail address: | dedmonds@garlandisd.net |
| Location: | Royse City, Texas |
| How did you find this page?: | family member |
| Comments: | Hi...
I was referred to your website after I returned from meeting with my surgeon for the first time to find out that my story is almost a mirror image of yours. I was diagnosed with Cushing's and after a CT Scan found that my tumor is the size of a football on my left adrenal gland. The tumor has spread and my kidney, spleen and possibly my pancreas will be removed during my surgery which is scheduled for March 6th. Sounds familiar...huh? I am not taking this well as I'm typing this...my emotions are a wreck. I just turned 37 years old on Feb. 13th, I've been married 17 years and have two daughters, Brittnee, 16 and Kaylee 9. All I can think of right now is that everything I read tells me that once this has spread...the prognosis still only gives us 9 months to 5 years to survive this thing! I'm ashamed and embarrassed that I am not being the strong person I normally am through everything....I'm normally the leader and the strong one, but I can't imagine not being here with my family...seeing my girls grow up and continuing my life as a wife and mommy. I don't know what I'm asking for or why I'm e-mailing...just needing to vent I guess. I thought it was ironic that your story was so similar..guess that is a bit of comfort since this is rare...and I'm asking "how in the world this rarity came to me...or any of us for that matter?" I am a Christian and strongly believe in GOD and that he has a plan....again, another reason I'm ashamed of my weaknes right now. I'm just not doing so well right now as I think of not being with my family that I love so much and is my entire world. Thanks for listening/reading...by the way...hang in there with your schooling....another ironic thing about our stories...I'm a 5th grade teacher and love it. Deena Edmonds Royse City, Texas |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Becky Wintrone |
| E-mail address: | elctrologistbecky@yahoo.com |
| Location: | WI |
| How did you find this page?: | surfing |
| Comments: | Hello, well I had my first CT scan-they found a 1/4 inch spot on my right lung. It's only been 3 months since surgery. I go back in 1 month to have another on my chest. I'll let you know. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Tammy |
| E-mail address: | tlo310@hotmail.com |
| Location: | Kentucky |
| How did you find this page?: | surfing the web |
| Comments: | I was diagnosed with stage II ACC on 12/12/2006. Your web page is very inspiring. I have been invited to the ACC support group but would also like to talk to others with this disease. Can you put me in touch with other support groups?
Thanks and I hope you are continuing to be healthy. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Becky Wintrone |
| E-mail address: | elctrologistbecky@yahoo.com |
| Location: | WI |
| How did you find this page?: | surfing |
| Comments: | Thanks for all the wonderful input. I Too have been told I have ACC. I went and did all the tests. They told me they didn't think it was cancer, then after the surgery, yes it was. My tumor was 6 cm. 250 gms. I'm between 2 and 3 stage.
Thanks for all the prayers. I will continue to pray for all of you. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Doug Thistlethwaite |
| E-mail address: | douglap@dupreeinc.com |
| Location: | Norco, CA |
| How did you find this page?: | My wife found it. |
| Comments: | Thank you so much for this information. It is the first hopeful information I have found. |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Kathy T. |
| E-mail address: | kathy@dragonknoll.com |
| Location: | California |
| How did you find this page?: | google search |
| Comments: | My husband had a 10 cm. adrenal carcinoma removed a month ago along with his right kidney. Pathology reports were encouraging - the mass was contained within it's boundaries. He's recovering well, but the looming fear of the cancer's return is unavoidable. He had surgery at Loma Linda University Medical Center. While his surgeon was very capable, and experienced with this type of cancer, we're not sure if LLUMC is where we want to continue with diagnostic services. Any recommendations for follow up CT scans, etc...? |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Luis Vargo |
| E-mail address: | luis.vargo@aracer.com |
| Location: | Las Vegas, NV |
| Comments: | This is awesome info, thank you for making the site! |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Amanda |
| E-mail address: | amanda-eley@sbcglobal.net |
| Location: | St. Louis |
| How did you find this page?: | |
| Comments: | Hi, My daughter is a survivor of pediatric adrenal cortical carcinoma. She was originally diagnosed in January 1997 at age 2 1/2. She had surgery and chemotherapy. In August 1998 she relapsed. Her doctor at St. Louis Children's Hospital recommended more chemo. During that time, they proposed to us to enter a clinical trial for solid tumors, which was an autologus stem cell transplant. I am ESTATIC to say that we have been cancer free for 7 years! She is now 12 1/2 and doing very well. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Debbie Linn |
| E-mail address: | mojoe@alaska.net |
| Location: | Valdez, AK |
| How did you find this page?: | websearch for Adrenal Cancer |
| Comments: | I'm glad I found this page. You have done an excellent job of putting positive with the information. As I was researching the disease everything I found was so negative and bad, it was difficult to try to see a positive side to any of this. Then I started the mitotane and am dealing with the tiredness and foggy brained side effects, so I became even more discouraged. I think this site will be good for me---I can talk to survivors of all kinds of cancer but didn't know anyone who is dealing with ACC.
Also for your information although this is extremely rare, I am the third person in my part of Alaska to be diagnosed with this in the last 8 months. I haven't meet or spoken with the other survivor but do find it curious to have these many cases in one area. |
| I am: | newly diagnosed. |
| I will be praying for your: | sanity. |
| Name: | Jackie |
| E-mail address: | redijaq@yahoo.com |
| Location: | west la |
| How did you find this page?: | Arlyn |
| Comments: | Hey, It's been a while since I last visited. I'm so proud of you for keeping this up. As always, you are an inspiration! |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Jason |
| E-mail address: | Jason Roberts |
| Location: | New York, NY |
| How did you find this page?: | Searching |
| Comments: | My father was diagnosed with ACC back in March of '06. He had a tumor on his left adrenal gland "the size of a loaf of bread" as he was told by his doctor at that time. As well as a small spot (1.5cm) in his lung.
At the time my father was in NC at the Wake Forest Med Center. After researching ACC online and speaking with his doctors in NC, I knew he needed to get to a top cancer center. Being in NYC and only a few blocks from Memorial Sloan-Kettering, I went to work on getting my father into their cancer center. To make a long story short, my father has been at Sloan since May. He first met with a surgeon, Dr. Coit, who said at that time the tumor was too large and involved with other organs to operate. At the end of May, my father started taking Mitotane along with Streptozocin at the direction of an oncologist Dr. Chung. Following a CT Scan earlier this month the tumor had decreased by more than 50% and the spot on the lung had also shrunk. At this time my father has stopped taking the mitotane for a month since the side-effects are really getting to him. Mostly the nausea - he has gone from a healthy 205 lbs. 6'-2" man to 141 lbs. Dr. Chung is hoping the break from the mitotane will allow him to put some weight back on. The plan seems to be to start up the mitotane again in a month and continue to monitor the results. If the mitotane fails, surgery may now be an option. As always, I remain hopeful. With my wife due with our first baby in March, I pray that it will get to know its' grandfather as I know him. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | arlyn |
| E-mail address: | cureacc at gmail dot com |
| Location: | california |
| How did you find this page?: | me |
| Comments: | If you would like to join our online support group please email me: cureacc at gmail dot com.
Also, we are having our first ever ACC conference on October 20, 2006. Patients, survivors, caregivers and doctors will be there. If you are interested in attending email me! |
| I am: | a survivor. |
| I will be praying for your: | sanity. |
| Name: | Scott |
| E-mail address: | shalverson@centurytel.net |
| Location: | Madison, Wisconsin |
| How did you find this page?: | Surfing |
| Comments: | I too am praying for you.
My 23 yr. old son Jason also has ACC. He was diagnosed on January 2nd of 2006 when he was just 22 years old. He went to a doctor with some chest pain. They did a ultrasound and found a mass in his abdomen. He then had a few CT scans and found the tumor. On Feb. 10th he had an eight hour surgery and believed they got all of the 25 pound tumor. The surgeons could not believe the size of the tumor and how it was entangled in his intestines. The surgeons ended up removing the tumor, his spleen, one of his adrenal glands, and part of his pancreas. He had a lot of damage to one of his kidneys also. The Madison doctors first believed it was a neuro endocrine tumor that was non cancerous. Due to some strange results from the many blood/urine tests, the doctors sent the tumor to the Mayo Clinic Pathologists for tests. That is when we heard the bad news that he has ACC. The local doctors don't know a lot about this type of cancer, so they contacted Dr. Schteingart at the University of Michigan. They have an ACC comprehensive center there. Dr. Schteingart has a staff of Oncologists, Endocronologists, Surgeons, and Radiation Oncologists. We visited him on May 2nd, and left with a treatment plan. Jason received 5-1/2 weeks of radiation treatment along with Xeloda. They wanted to treat the tumor bed, because pathology determined the cancer cells went all the way to the margins of the tumor. They also decided to radiate his kidney, so they expect this to shut down in the near future. This was extremely hard on Jason. He had a lot of Nausea, vomitting and diarhea. A May 18th PET scan revealed a small spot at the base of his lung. This led to another CT scan. At this time they are going to wait and do another CT scan which is scheduled for September 6th to see if there is any change. He also has to do another 24 hr. urine collection to measure his cortisol levels. We are crossing our fingers, and more imoportantly praying non stop for Jason. Jason currently takes Mitotane twice daily, and Prednisone once daily. Jason was a healthy, happy engineering student at the time of his diagnosis. Needless to say, he had to drop out of school with only two remaining semesters left. He has decided to accelerate some of his life goals. He got married on August 19th, and as I am writing this, he is in Hawaii on his honeymoon. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Bill Adams |
| E-mail address: | Bill at BillAdams.net |
| Location: | Waikoloa, Hawaii |
| How did you find this page?: | ai Told Me... |
| Homepage URL: | http://BillAdams.net |
| Comments: | Thank you for allowing me to understand this aspect of your life, Arlyn.
I'm not certain I understand the proper method with which to pray, but I can tell you it won't be limited to the single choice I was provided below. I'm not good for much, but I'm pretty sure I can make you laugh if you're ever in need. (808) 883-xxxx - Home (408) 888-xxxx- Cellular Edit: Bill! Thank you for signing and even giving your number...I had to edit but I have them on file and will call if needed. I am so touched. Aloha, Arlyn |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Katie |
| E-mail address: | kbarnes at pdq.net |
| Location: | Houston |
| How did you find this page?: | |
| Comments: | Hey,
I stumbled across this page in one of my frequent web searches regarding cancer (the glut of online information can be depressing at times, but highly informative). I was diagnosed in 1979 with ACC at the age of 7 months. I underwent an adrenalectomy and was sent home from the hospital with the general understanding that I was unlikely to make it to age 5. Obviously, that was years ago, and not something I even remember, but my cancer history came back to slap me in the face in 2004 when I was diagnosed with invasive breast cancer at the age of 25. Chemotherapy, a double mastectomy and lots of medical testing later it turns out that I have Li-Fraumeni Syndrome, a condition that predisposes me to a number of cancers (two down, about six to go). I admire your commitment to the cause and your dedication to activism. We young survivors need to fight to be heard and I just wanted to lend my voice to yours. |
| I am: | a survivor. |
| I will be praying for your: | sanity. |
| Name: | Samantha {Faraci} Bewley |
| E-mail address: | Samb264 at cox.net |
| Location: | Gilbert, Arizona |
| How did you find this page?: | |
| Comments: | My name is Samantha {Faraci} Bewley, I lost my father Richard Samuel Faraci in 2000 to ACC. I can't tell you how glad I was to find your site, I cried while reading it. I want to share my dads story w/you, he was first diagnosed in 1985, his tumor was as large as a nerf football but was encapsulated. This we thought was a good thing but it turned out not to be. They removed it along w/his L-kidney and he was clean for 10 years. Just about 10 years to the day of his first diagnosis, he was rediagnosed. This time it wasn't encapsulated and had spread through his diaphragm and up into his ribs. The surgery was horrible. They had to remove two ribs and he then had a surgically enduced hernia. 2 more surgeries were to follow and one of them almost killed him when they perforated his bowel and he lived w/an infection for almost 10 mths because he wasn't working and on disability but not long enough for medicare benefits. We knew that day in June of 1995 that he wasn't going to get 10 years like last time, we knew based on all the research I had done on the internet that we would be lucky to get five years. My little sister was 13 when he was diagnosed this last time and he had two goals. First was to make it to the new millenium and the second was to see my sister graduate from High School. He made the first but not the latter. My dad lost his battle to ACC on February 23, 2000 and although I knew this day would come when my husband said the words to me I couldn't grasp it. He said "Honey, I'm so sorry" I looked at him and I had no idea what he was about to say, although I had just talked to my mom the night before and my dad had lapsed into a coma the 3 days before. I still insisted she put the phone up to his ear so I could tell him I loved him along w/my 5 year old son Sammy. He went on to say " Your dad died", I looked at him like he was speaking yiddish. It was a feeling I will never and have never forgotten. All along, even though I wanted to feel bad for myself, I felt worse for my sister Courtney. I had him for almost 30 years, she was only 18 and since she was 13 all she new was my father being sick. She will never be the same.
My father was a patient of Dr. Marvin Chassin here in Phoenix Arizona. He was a wonderful doctor but like many he had only seen 1 other case of ACC. I would do research on the internet and fax him clinical trials for other cancers begging him to at least try it on my dad. How do they know it wouldn't work if they didn't try. It was very frustrating, I'm sure you know the feeling. I am so glad to see TGen is doing research. I actually work for Banner Good Samaritan Hospital as a nurse and they are partners w/them. My heart goes out to you, your family and friends. I saw your link about the "kidney bean", the funny thing is my sister and I have the same necklace, we didn't know you were selling it for ACC and for some reason we were drawn to it and had bought one someplace else. I will wear it now w/a hole new meaning. If there is anything I can do, help fundraise, send letters what ever I will please just let me know. I am w/you on this, more research needs to be done. I use to tease my dad and say "Sure you couldn't get colon cancer or brain tumor like everyone else could you, you had to be different." He would laugh but I was kinda serious. Had he gotten one of those cancers it might have had a better chance and certainly more clinical trials. When he had it I think there were only 3 trials going on and they were all stage I trials. In other words he would've been a huge Ginnea Pig. Awareness needs to be raised about this cancer and I am willing to do anything. Please continue to be strong and continue your fight. You will forever be in my prayers. Again, please let me know if there is anything I could do to help. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Toni-Ann Serio |
| E-mail address: | ec_egc at yahoo.com |
| Location: | Iowa City, IA |
| How did you find this page?: | |
| Comments: | My father was diagnosed last week with adrenal cancer. He has had no symptoms, they just found the tumor by accident (while doing an MRI on his lower back for a nerve problem). My father has his initial meeting with the doctor next week, and they will also be doing a bone marrow biopsy that day. I just wanted to let you know that I am so happy I found your site--it's more information on this cancer than I have been able to find so far! Thank you for sharing your story, and thank you for everything you have done to help to draw attention to this cancer. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Marjorie Tuch |
| E-mail address: | margiejeanne at hotmail.com |
| Location: | Coral Springs |
| How did you find this page?: | |
| Comments: | I was recently diagnosed with a 13 cm. adrenal cortical carcinoma which produced aldecerone and had it removed last week. This followed about 6 years of complaining about symptoms to doctors, and they could find nothing. I now found out that symptoms all related to the tumor. It was totally encapsulated, and the margins appear to be clean. They removed the tumor and the adrenal gland only. I had no cancer symptoms, and surgeons were surprised that it was malignant even though it was so large.
I am going to see a research-baseed oncologist with ties to Moffat Center in Tampa, Florida soon, as surgeons say they don't know if any of the cells escaped into my bloodstream. Does anyone have experience with this specific type of tumor? What follow-up treatment did you receive, and how well have you done? I would be very interested in information from anyone who can provide it. Thanks! |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Shannon |
| E-mail address: | bedard at dc.rr.com |
| Location: | Palm Springs, CA |
| How did you find this page?: | google search |
| Comments: | Hi..I am so happy you have survived this cancer. I am currently in the fight. I stopped my chemo in January and am doing everything via a strict diet. So far so good. I have not had surgery because it is in an early stage and DR say that my left gland/kidney are not functioning, so to take the right where the cancer is would not be good. It's so nice to find someone out there that has this RARE cancer. I would love the opportunity to talk with you. Thank you for your creation of this site. I bought a couple of shirts and have told all my friends and family. I currently give to the University of Michigan that has a specific adrenal fund that they have set up. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | VANESSA |
| E-mail address: | WWW.SKOOTER_TRASH at HOTMAIL.COM |
| Location: | DALLAS,TX. |
| How did you find this page?: | SURFING |
| Comments: | ON JUNE 6TH MY MOTHER ENTERED INTO HEAVEN. SHE IS NOW TOTALY CANCER FREE. FOR THOSE OF YOU THAT HAVE THIS CANCER, LIVE LIFE TO THE FULLEST. ENJOY YOUR FAMILY. SMILE EVEN IF YOU DON'T WANT TO. MOST OF ALL PRAY. PRAY FOR YOURSELF & OTHERS. MY MOTHER ALWAYS TOLD ME THAT GOD DOESN'T MAKE MISTAKES. I BELIEVE THAT TO BE TRUE. BE STRONG IN YOUR FAITH. REMEMBER, THE JOY OF THE LORD IS MY STRENGTH. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | VANESSA |
| E-mail address: | WWW.SKOOTER_TRASH@HOTMAIL.COM |
| Location: | DALLAS,TX. |
| How did you find this page?: | SURFING |
| Comments: | FOUR YRS. AGO MY MOTHER HAD A FOOTBALL SZ. TUMOR REMOVED ALONG WITH A KIDNEY. SHE WAS CANCER FREE FOR ONE YR. SHE'S HAD TUMORS, PIECES OF TUMORS & RIBBS REMOVED MORE TIMES THAN I CAN REMEMBER. SHE DID THE MEDS & TREATMENTS TOO. NOW MY MOTHER HAS TUMORS FROM THE TOP OF HER HEAD TO HER TOES. EVERY ORGAN & BONE IS COVERED. MY MOM IS THE STRONGEST WOMAN I KNOW. BECAUSE OF HER STRONG FAITH IN JESUS CHRIST SHE HAS LIVED LONGER THAN EXPECTED. SHE IS IN HER LAST FEW DAYS NOW MAYBE EVEN HRS. I LOVE HER SO MUCH. I HATE THIS CANCER ITS MEAN TO PEOPLE WE LOVE.
|
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Amy |
| E-mail address: | amyharf at hotmail.com |
| Location: | New York City |
| How did you find this page?: | internet search |
| Comments: | My father, Judge David I. Harfeld, died yesterday from adrenal cancer. He was diagnosed in January, had radical surgery to resect the 10" by 10" tumor which had invaded his diaphragm, lung, ribs, and backbone. They were optimistic about his recovery until he got pneumonia and went quickly downhill from there. He'd lost so much weight and was so weak that he couldn't fight anymore. I will miss him more than words can express and I hope that his spirit continues to guide and cradle me as my life continues. We are having donations in his name made to the National Cancer Institute Fund for Adrenal Cancer Research. Feel free to e-mail me back with any support. I'm so sad- I can't believe he's really gone. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Deanna Mccaffrey |
| E-mail address: | dlbmccaffrey at hotmail.com |
| Location: | Cleveland, Ohio |
| How did you find this page?: | |
| Comments: | Hi I have doing my own research online as well. I am 35 years old and I have been complaining to my doctor for 2 years atleast. My symptoms I was diagnosed in November 2005 and I had my adenal gland, 14cm tumor and left kidney removed in Jan.2006. I have been feeling pretty good. Tired though. I just recently went back to work and I'm starting to feel even more tired and I'm just getting worried because my energy level is so low and I have been getting bad headaches again. I go next month for a CT and chest xray so we will see what happens. I will be praying for everyone that have been diagnosed with this cancer and any cancer. It's a terrible thing to have to deal with. We are the one in a million and we need to stick together. Thank you & God Bless |
| I am: | newly diagnosed. |
| I will be praying for your: | sanity. |
| Name: | Joe |
| E-mail address: | jnjhess@gci.net |
| Location: | AK |
| How did you find this page?: | cruising |
| Comments: | All,
I have a curious question: How many people have or are taking Mitotane post surgery? Keep the faith Cheers, Joe |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Stacy Shaw |
| E-mail address: | stshaw@halek12.org |
| Location: | Moundville, Alabama |
| How did you find this page?: | looking for acc info |
| Comments: | Hi, my 4 yr old nephew was diagnosed with acc 5 weeks ago. He had a tumor the size of a large cantalope on his right adrenal gland. We noticed his voice was getting deep and manly sounding and he also grew pubic hair, so his mother took him to the dr. They were thinking something along the lines of his pituritary gland as well as I was. They did a CT scan and it showed the large mass. It was removed as well as his adrenal gland. The dr's don't want to do anything right now except watch him every 3 months. I'm not sure what stage it was in. He has been having alot of pain in his legs and his knees and elbows swell, not sure if that is from growing pains from him growing so fast or if it has spread to his bones. He had a bone scan done friday but I have not heard the results. Please pray that he will be fine. My brother his going through so much. His mother-in law has breast cancer, his wife has breast cancer, his sister-in-law has brain cancer and now his son has been diagnosed with cancer. When is he going to catch a break? Thanks for listening and I will be praying for all |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Joni |
| E-mail address: | mrsjoni@comcast.net |
| Location: | Pennsylvania |
| How did you find this page?: | search engine |
| Comments: | Hello, Arlyn. I am touched and deeply moved by your testimonial about ACC. I was scheduled for hysterectomy surgery in September 2003. During surgery the assisting surgeon noticed abnormalities with my large intestine. She performed emergency surgery and decided to check me out. She felt a mass on left side. After CT scans, MRI scans, & referrals, it was evidenced a large tumor existed on my left adrenal. I had surgery March 2004 to surgically remove the left adrenal & tumor. I continued with MRI scans every 3 months. December 2005 the MRI scan showed a tumor on my right adrenal. Surgery was performed January 2006. It has not been determined whether this tumor was a spread from the left adrenal tumor or a secondary cancer. I'm on medication for the duration of my life. As far as treatment, my doctors are not sure what would work. I wear a medic alert bracelet and I have regular visits with the oncologist & endocrinlogist along with MRI scans every 3 months. I like you continue to follow the sun. Thank you so very much for your site. It is comforting to know you're not alone to deal with a rare cancer. |
| I am: | a survivor. |
| I will be praying for your: | peace. |
| Name: | Joe |
| E-mail address: | joe.hess@halliburtion.com |
| Location: | AK |
| How did you find this page?: | surfing for info |
| Comments: | Well, it has now been a hare over one year since my surgery, and nothing has shown up! Anywhere!
Keep the faith. |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Joe |
| E-mail address: | joe.hess@halliburtion.com |
| Location: | AK |
| How did you find this page?: | surfing for info |
| Comments: | Well, it has now been a hare over one year since my surgery, and nothing has shown up! Anywhere!
Keep the faith. |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Rob Cooley |
| E-mail address: | robsctc@optusnet.com.au |
| Location: | Wollongong |
| How did you find this page?: | Arlyn |
| Homepage URL: | http://www.kimdaltonacc.blogspot.com/ |
| Comments: | Hi Arlyn,
Thinking of you and everyone else take care keep well. I hope you enjoy Kim's Book Rob xxx |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Danele Cousins |
| E-mail address: | Danele@netzero.com |
| Location: | Virginia |
| How did you find this page?: | net |
| Comments: | Hi Everyone ~ I am a 34 year old mom of one beautiful 12 year old son, Ayden. I was diagnosed with ACC in May 2004. I had a 13 cm tumor, my left adreanal gland, left kidney, spleen and some lymph nodes removed. I went back to work full time (as a social worker with abused/neglected children) after 10 weeks post surgical.
I didn't beleive the statistics on this cancer. I was young, relatively "healthy" despite this prognosis, and although I did implement dietary changes and supplements, I didn't follow them strictly enough or for long enough. In retrospect, I wish I had done things differently and I pray that anyone struck with this disease is willing to quit work and focus 100 % on healing. I had scans in December 2005 that showed widespread lung metastases. After a clean chest scan last May, I had opted to wait 6 months, which turned into 7. In that short amount of time 6 tumors grew in my left lung, several larger than 1 cm. Since that time I have gone on an extremely strict dietary program. It is called the "Primal Diet" and is espoused by the nutritional activist Aajonus Vonderplanitz. {book:"We Want To Live" www.primldiet.com) It is challenging and includes raw animal products. I have done a phone consult with Aajonus, right before my surgery in 2004, and did not actually care for his personality, BUT his protocol does seem to produce results. I had scans done at NCI in Bethesda 3 weeks ago which showed absolutely no growth! I wish I had stayed on this diet from day one after my surgery. I truly believe it could have prevented this step to stage IV. I would encourage anyone newly diagnosed who is committed to doing whatever it takes to consider this approach. love and blessings to all, danele |
| I am: | a survivor. |
| I will be praying for your: | peace. |
| Name: | Kim Gray |
| E-mail address: | kimberlygray@direcway.com |
| Location: | Arlington, Washington |
| How did you find this page?: | Searching the web |
| Comments: | Hi,
I am 44 years old and just received the biopsy results - that my left adrenal tumor is ACC - it was removed 12/19/2005. I have been chasing various doctors for 9+ years with a variety of symptoms that now are proving to be associated with this tumor and getting no serious diagnosis until the tumor was discovered this October by accident on a CT scan ordered to check for kidney stones after related simptoms showed up. Since removal of the tumor, numerous of the 'symptoms' that I had been trying to get taken seriously by doctors have disappeared - not coincidence.... Even after this tumor was identified in the CT scan, I have had immense difficulty getting the doctors to take this seriously and order the pre-diagnosis testing that I was requesting - so I have been not checked out well for spread issues. Now the local oncology doctors are telling me they have not ever treated a case ACC so I need to go elsewhere - so I am searching for where to go, what to do for further diagnosis and treatment. ANY suggestions as to medical facilities, doctors, or treatments WOULD BE MUCH APPRECIATED! Please use either email: kimberlygray@direcway.com or kim.gray@emulex.com. I have an appointment at the Mayo on Feb 7th that I am urging my surgeon here to give me a referral for and possibly move the appointment up. What other medical facilities have people had experience with? It is terrifying to find so little experience or information on this issue. As you have recommended on your site - the best way for you to ensure survival - is to become as educated as possible on all avenues of treatment. I would appreciate any information from people who have had experience with this type of cancer. Have people had positive results from Chemotherapy, i.e. Mitotane - or good results from radiation treatment? Thanks, --- Kim |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Carmen |
| E-mail address: | leighpatrick@internode.on.net |
| Location: | Wollongong, Australia |
| How did you find this page?: | Rob Cooley |
| Comments: | Hi
I lost my 53 yo mother last month. I would like to send my best wishes to you and may your zest for life and positivity help you through the struggles of cancer. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Wendy Kaczmar |
| E-mail address: | wendykaczmar@hotmail.com |
| Location: | Virginia |
| How did you find this page?: | College Teammate |
| Comments: | Wow! I am really impressed by the attitude and outlook you have on life and the cancer. What a great role model you are, not only to those who know you but also to those who you impact by your website. My mother and a good friend of mine are both breast cancer survivor's and any form of cancer is very scary. I couldn't even begin to imagine what it was like to deal with a rare form of this disease. Thank you for sharing yourself to the world and may your efforts have an impact on the research. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Laleh |
| E-mail address: | lalehrazavi_r@yahoo.ca |
| Location: | Toronto,Canada |
| How did you find this page?: | cancer caompass |
| Comments: | Hi everyone,
I'm 28yrs,female,diagnosed with stage III ACC(8.5 cm tumor) Auq/05.I had a surgery to remove that with my adrenal gland .I saw my oncologyst yesterday and they found another 8.5 cm in my liver now.I don't know if any of you had liver lesions and if they are resectable or not and what would be the treatment but I have to go for chest CT and bone scan and then they will send me to liver surgeon I belive.I was wondering about MD Anderson.Could you please send me some info about him?Is he specialized in this type of tumor?I'm living in Canada but I would like to go and see him if he is the right guy. Thanks guys ,I do need your support laleh |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Randy Rawson |
| E-mail address: | R.rawson@enviro-tec.com |
| Location: | Tierra Verde, Fla. |
| How did you find this page?: | sister told me |
| Comments: | My daughter Camille whom is now a beautiful 10 year old girl was diagnosed with ACC in July 04. She went into early mensus @ 8 yrs and after a physical review and CT scan, we uncovered a 10cm mass on top of her left kidney. She had immediate surgery and tumor removal. Unfortunately the surgeon could not get the encapsulated tumor out without spillage into her body. She immediately went into adjuvant chemotherapy for 8 months. For 8 months she healed emotionally and physically, and eventually returned to the beautiful little lady we knew. Then came the phone call. After a routine PET scan, we uncovered 4 tumors in the identical area. She just recently completed surgery at Sloan Kettering hospital and is scheduled to start a new round of chemo next week. We don't know if this is the right decision. Her lungs and liver are clean. Her lymph nopdes were resected and are clean. It appears that the original surgeon did not get all of the tumor and chemo did not effect it. My hope is the last suurgery removed the localized disease and she is cancer free. I know it is a long shot, but I believe. My wife and I are at a cross rodes in the effort to save our beautiful little girl. We are under the watchful eye of St. Judes Cancer Research Center and Sloan Kettering, but no one knows whether we should do chemo or not! We are praying for an answer! |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Ti m Crowley |
| E-mail address: | tocrowley@yahoo.com |
| Location: | Denver |
| How did you find this page?: | |
| Comments: | This is a great and needed site - thank you to the founder and all participants.
I was diagnosed by Mayo with stage 4 ACC in March '05 and subsequently had a 14 cm tumor removed. MD Anderson is managing my case and the Dr's have been phenominal. Currently I am in a stage 2 clinical trial and while it is too early for any definitive results things look positive. The development of new drugs that may impact ACC (and other carcinomas) is apparently accelerating very rapidly, however, I am not certain that the information flow within and between the medical and patient communities is keeping pace. I am exploring the possibility of establishing a foundation to facilitate the flow of information - most likely through formatted website(s)- that would tie together the handful of Drs and institutions around the world that are focused on ACC and, hopefully, accelerate critical information that may have impact on the lives of patients. At this point I am trying to establish that the need for this really exists - and to find out whether or not a good alternative already exists. Any thoughts or information you may have would be greatly appreciated. Blessings to you all - especially to the caregivers who, unlike us patients, are here by choice! Tim |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | val |
| E-mail address: | msval1246@aol.com |
| Location: | virginia |
| Comments: | Im 38 y/o...signed the guestbook back in July ...had ACC prior to that w/ a kidney removal, at the last entry they had found a mass on my liver. Since then I've had a needle biopsy and it's ACC again. Along w/ that I have several lymph nodes in my lungs and other places that are growing..I've started with a naturepathic dr 2 months ago....and some lymph nodes have gotten smaller, some remain unchanged...and 1 did grow ...have decided to do chemo ablation to the tumor on the liver in hopes of shrinking it...then hopefully RFA to get rid of the tumor..will continue w/ the natural means as well,but wont go any further w/ chemo until I've had a chance to have one of the lymphnodes removed and tested...I've had alot of heavy vaginal bleeding due to the increase of hormones this cancer provides,cant get a depo shot to stop it due to the liver tumor, but the natural way I have been able to stop the bleeding and take a natural form of iron to build my red cells back up...I have good days and bad days...feels like I have chronic fatigue sometimes...I just take one day at a time, and have learned that ...it's ok......just looking forward to finding a cure ...God Bless everyone!!! |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Joanne |
| E-mail address: | mrspw2000@yahoo.com |
| Location: | pa |
| How did you find this page?: | search |
| Comments: | I am the aunt of Jes (Jessica), Sue's daughter in the post from 10-18-05. We are sad to say that Jessica passed away sometime after 2am on 10-22-05 in her sleep. As Sue noted she was diagnosed with ACC in Jan 05. She was not able to have the cancer removed surgically due to its locaton and they started an agressive course of chemo right away.. but it was not enough. Her tumors showed no response. This was a heart wrenching time.
Jes wants everybody to remember to say I love you to your family and friends. We should have hope for the future and live out our dreams.. Never give up. I hope for a cure and until then a better diagnositic tool, I hope that there are better screening methods for healthy people.. I hope that ACC research will improve so that others aren't finding out in Stage IV. May God Bless everyone. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Nancy |
| E-mail address: | wildmans@muohio.edu |
| Location: | OH |
| How did you find this page?: | browsing |
| Comments: | I came upon this web site today and only wished it had been around a few years back. I had a 35 year old son diagnosed with Stage IV ACC in September 1996 and he passed away in May of 1997. He felt so alone and scared with no one to talk about this disease and this web site would have helped him so much. I just want to say thank you for your sharing (it means so much to others that are fighting the same battle). |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | sue |
| E-mail address: | suewade@alltel.net |
| Location: | pa |
| How did you find this page?: | luck |
| Comments: | I've been to this site before and am thankful to read from others going thru similar crisis in their lives
My daughter Jes was diagnosed in Jan 2005 with stage IV ACC we are so so wishful for a miricle. she had aggressive treatments up untill a month ago them we tried to get involved with a clinical trial and were rejected cuz that doc feels she should enjoy what she has left, maybe a month. and our onc doc agrees and now its comfort care. Jes turned 20 in April I cant accept this .Please if anyone knows of something that can help drop me a line. I feel like they've given up and there MUST be something to help us. This disease is breaking my heart. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Rita Dowling |
| E-mail address: | rdowling at msddecatur dot k12 dot in dot us |
| Location: | Kansas |
| How did you find this page?: | surfing |
| Comments: | My daughter, Treesa (24), had her adrenal cancer tumor and her kidney removed June 27, 2005. She lives (lived) in New Orleans. She will be going back to MD Anderson in Houston for her second check up on Mon. Oct 17. She is up to 5 mitotane pills a day. Before she started the mitotane they were able to harvest eggs and freeze embryos. Prayers and good thoughts would be appreciated. |
| I am: | a caregiver. |
| I will be praying for your: | health. |