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: | Arlyn |
| E-mail address: | cure acc at gmail dot com |
| Location: | California |
| Homepage URL: | http://books.dreambook.com/followthesun/cureacc_book2.html |
| Comments: | Hello! This guestbook is now full. Please click above to sign the new guestbook or paste this link in your browser http://books.dreambook.com/followthesun/cureacc_book2.html
Thank you for visiting! |
| Name: | donna passini |
| E-mail address: | dpassini@granvillemedical.com |
| Location: | NC |
| How did you find this page?: | browsing |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Margaret Mader |
| E-mail address: | mader at fuse dot net |
| Location: | Cincinnati area |
| How did you find this page?: | searching for hope |
| Comments: | Hi everyone, I lost my father to ACC last month and am committed to helping people find a cure, or at least cope until they do find a cure. Arlyn has a link to Dick Beverlins ACC message board, but many people find that much too scientifically related. Sometimes you just want to talk to normal people that are or have gone through the same thing that you are. I have started a new group. Go to Yahoo, then find the groups link, then find group ACCompassion and ask to join. If that doesn't work,just email me and put ACCompassion in the subject and I'll send you a link. Hope to see you there. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Mark |
| E-mail address: | marker1860 at hotmail dot com |
| Location: | Fond du Lac WI |
| How did you find this page?: | surf |
| Comments: | Hi to everyone
I have written here before about my daughter Rachel. She battled ACC for three years, and Sunday morning she lost the battle. I know this is a web site of hope and I hope and pray all your prayers are answered. she left behind a wonderful husband and three year old son. They are well loved and will be taken care of. My hopes and prayers are with all of you. God bless. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Chris Bateson |
| E-mail address: | christopher_bateson at hotmail dot com |
| Location: | UK |
| How did you find this page?: | Friend |
| Comments: | Dear Drew
I recently saw your email for the clinical trial at the National Institute of Health in Bethesda Maryland to treat this with and experimental drug along with chemo. Can you give me some more details on what exact protocols (in terms of drug regimes are begin used.) I am currently undergoing chemo for aggressive acc but am also supplementing with Iressa which is meant to have some success with acc patients. Many thanks for your help. Anyone else who can shed any light on successful treatments would be most appreciated. Kind regards Chris |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Dawna |
| E-mail address: | forevrrblu [at] msn dot com |
| Location: | Whittier |
| How did you find this page?: | Arlyn |
| Comments: | Hi Ms.Arlyn,
Wishing you health, happiness and much ALOHA spirit this week. You're loved and prayed for by me daily. Thinking of you! Dawna |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Kim Brown |
| E-mail address: | kimsjetta[at]sbcglobal dot net |
| Location: | Texas |
| How did you find this page?: | AC cancer search |
| Comments: | Today, 9/13/05, I'm waiting the results of a 24 hr. urine test on metanephrines. I have had stroke-area bp numbers and my family dr. is concerned, gee you think!!
Your site is beautiful and cool, too bad we have to get sick to find it!! If this turns out I have this, I will stay in touch and delve deeper. I know how GREAT MD Anderson is, I live in Texas and my grandfather spent years down there for his colon cancer treatment (I did too as a kid for the trips to Astroworld and ballgames with him) If I have this I guess I will become a second generation patient there. Good luck in your future, you sound like a wonderful young lady!! |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Rita Dowling |
| E-mail address: | rdowling[at]msddecatur dot k1 dot in.us |
| Location: | KS/IN |
| How did you find this page?: | google-ing |
| Comments: | My daughter had her ACC discovered in June, '05. It was 15 cm and was removed June 27 along with one kidney. She lives or should I say, lived, in New Orleans. She went to MD Anderson in Houston for treatment. She was told she could wait 2 or 3 months before they start the mitotane treatment. She is only 24, married with no kids. She started the process of egg harvesting since the mitotane may make her infertile. Then along came Katrina. Long story, but she is living in Kansas, has had the eggs harvested. She is suppose to have her acne (result of the overproduction of hormones) clear up before she starts her mitotane. Her story can be found in the Kansas City Star, September 10, page 4. Title is "Having to rely on kindness of strangers". It makes us all nerveous since she hasn't started the mitotane yet. I find your stories very informational. So glad there is a website like this. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | olivia checa |
| E-mail address: | ocheca9859[at]msn dot com |
| Location: | queens, usa |
| How did you find this page?: | internet |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Brigitte Groves |
| E-mail address: | bgr0[at]aol dot com |
| Location: | Brighton England |
| Comments: | I hope everyone is battling on...do keep in touch.
|
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Drew |
| E-mail address: | dtlink1[at]msn dot com |
| Location: | Atlanta |
| How did you find this page?: | Surfing |
| Comments: | My wife was diagnosed in May of this year, had her right adrenal gland,and over 50% of her liver removed. Cancer returned to her liver 4 to 5 weeks after surgery and has spread to lungs. We entered a clinical trial at the National Institute of Health in Bethesda Maryland to treat this with and experimental drug along with chemo.They have had some positive results in a few patients and we are hopeful. This trial is specificaly for Adrenal Cortical Carcinoma. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | mike |
| E-mail address: | mikeymac152002 [at] yahoo dot com |
| Location: | new york |
| How did you find this page?: | yahoo |
| Comments: | Hey all, i have signed the page before. IM back. IM currently going through treatment to get rid of my cancer. I have a huge mass removed along with some organs back in december. My cancer had come back in a few areas and now im using a combination of radiation and chemo to try and kick this thing. My question is has anyone heard about some alternative methods of healing from those. Anything from treatment centers anything at all. I heard about a place in Chicago that has types of treatments offered but I cant find any info. I cant seem to find any information.....im not great on the computer. So if anyone has any information for a 22 yr old kid who hates chemo and just wants to be healthy again please send it my way |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Diane |
| E-mail address: | diane85 [at] gmail dot com |
| Location: | chino |
| How did you find this page?: | been here before |
| Comments: | Hi Ninang Ayim, how are you? I can't wait until Saturday. Take care and I'll see you there. Love, Diane |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Brigitte Groves |
| E-mail address: | bgr0 [at] aol dot com |
| Location: | Brighton, UK |
| How did you find this page?: | been before |
| Comments: | Sadly my sister in law died last Friday, 22 July 2005.
I hope someone finds a cure to this awful disease. Brigitte x |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | val alexander |
| E-mail address: | msval1246 [at] aol dot com |
| Location: | va beach,va |
| How did you find this page?: | lycos search |
| Comments: | I had adrenal cancer show up in my right kidney 2 years ago...that was removed...along w/ the adrenal gland on that side and some lymph nodes.........just this week I have a tumor show up all of a sudden in my right part of my liver...they beleive it's adrenal again....but the test have not come back.............I am 38 y/o.......and besides these times dealing w/ cancer ....the only other time I had cancer was at age 4, back in 1972 I had hodgkins..which I was cured from.........I to want to find a cure for this cancer.....there has got be a link somewhere |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Brooke Pedersen |
| E-mail address: | hugger07 [at] aol dot com |
| Location: | Huntington Beach, CA |
| How did you find this page?: | webmd.com |
| Comments: | Hi Everyone...
I was diagnosed with ACC in 1996 and had surgery to remove the tumor. I was successfully removed along with my left adrenal but the doctors said that if it had been in my body for six more months it would have metastasized. I had four rounds of chemo and was cancer free for six months. It then returned on my kidney. I then had my kidney, spleen, and appendix removed. I then had six weeks of radiation. I am happy to say that I have been cancer free for 7 years now!! Since the tumor was so large it basically shut my right adrenal gland down. Has anyone had that problem also? It has taken a total of 11 years but I was just tested last week and my remaining adrenal gland has to started to "wake up"! This is such a radical cancer that I am amazed that there is not more research for it. My doctors name is Dr. Finklestein in Long Beach, CA. If anyone wants any more info on him please please please e-mail me. He truly saved my life! God bless all of you and I will continue to pray for those still fighting. Brooke |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Brigitte |
| E-mail address: | b.groves [at] sussex dot ac dot uk |
| Location: | Brighton, England |
| How did you find this page?: | Been before! |
| Comments: | I haven't been back to this site for a while, not since my sister in law, Dee, was orignally diagnosed in January 2005. The adrenal gland was removed but spreads were found in the liver, lung and bone. The Adrenal tumour has since regrown causing problems, not least the soul destroying side effects like facial hair.
Sadly Dee has continued to go down hill despite two sessions of Chemo and then a trial drug at the Royal Marsden in Surrey. Although everyone has done what they can, she is now on seriously borrowed time. We take each day as it comes. Please email me if you would like any information on the lines of help we took. It might not have helped Dee but there is hope that we can make some headway in the future. I would also like to keep in touch with everyone, it will be nice to hear of some good news to come out of all this saddness. You might find this book gives some hope. Finding Hope: When Doctors Say There Is None Surviving Cancer in the Harsh World of HMO Medicine F. H. Scribner |
| I am: | a caregiver. |
| I will be praying for your: | sanity. |
| Name: | Ericka Manint |
| E-mail address: | Ericka1278 [at] earthlink dot net |
| Location: | Dallas, Texas |
| How did you find this page?: | my husband told me |
| Comments: | I just found out that I have ACC a week ago. I had a 16cm tumor, 1 adrenal gland and part of my liver removed. Im 27 years old and have a 5 year old boy and a 7 month old girl. I don't know how to take all this. Im very worried for myself and the future of my children. I am the one who is supposed to raise them!! Im sure that I am in a bit of a depression, and might like someone to talk to. This is by far the hardest thing I've ever had to deal with. Please keep me in your prayers! |
| I am: | newly diagnosed. |
| I will be praying for your: | peace. |
| Name: | James Felstead |
| E-mail address: | felstead159 [at] hotmail dot com |
| Location: | London |
| How did you find this page?: | search |
| Comments: | Hello
My name is James Felstead, I live in London. I have recently read all of your posts on dreambook.com and I was deeply saddened, frightened, uplifted and encouraged by what I read. So many of you have suffered hardships and sorrows that are hard to comprehend yet there are also stories of success and triumphs. My close friend was recently diagnosed with Adrenal Cortical cancer at a developed stage (IV). A sizable tumour was successfully removed in a lengthy operation along with one of his glands and a kidney. Unfortunately the disease has spread has spread to other organs around his body. It has all been very difficult to take in and I feel like we’ve only just emerged from the shock of it all. We are now focused on all we can do to fight this disease. My initial research and indeed the prognosis from his surgeons have not been very positive. The rarity of this cancer is clearly a distinct disadvantage although a meeting he has had with a Professor Dalgliesh (an expert in oncology) has given us some hope. I don’t fully understand what he is proposing as the explanations have come second hand, I believe that it involves looking at the molecular pathways in this cancer and then comparing those pathways with other cancers. They then look at developing treatments based on those cancers. This professor has access to lots of new treatments that being developed due to his position. I have also read some information relating to a treatment developed for diabetes called Thiazolidinediones that seems worth pursuing. I realize that you all have your own battles to fight and I wish you each success. I would however be extremely interested in sharing any information relating to possible treatments. They say that knowledge is power and with the odds against us I am determined to examine every possibility. If you can offer any information that you feel might be relevant I would be extremely grateful. I will of course be more than happy to share any information that I get, posts on the greeting page would seem a sensible starting place. Many thanks for you time and my most sincere regards James Felstead |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Chad Manint |
| E-mail address: | cmanint [at] earthlink.net |
| Location: | Dallas Texas |
| How did you find this page?: | father found this page |
| Comments: | My wife had surgery on Thursday, June 30 to remove a tumor of unknown origin. It was so massive that they could not tell where it was coming from using CAT scans. After surgery we were told it was an adrenal carcenoma, stage 4. It was also found to be on her liver. All of the gross turmor was removed. We were told to expect micro tumors to grow soon in other places. She was given less than one year to live. We are not accepting that prognosis. My wife is recovering from surgery now. We are exploring was to treat her to prologn her life. My father found this web site. I don't have much time now to explore it, but I will when my wife and I can get out of the hospital. Many family and friends are helping explore treatments. I thank you for your dedication to spread the word about ACC. I pray for her and you. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Bambie |
| E-mail address: | hypnobambie [at] gmail.com |
| Location: | Utah, USA |
| How did you find this page?: | web search ACC |
| Homepage URL: | http://www.freeflightuniverse.com |
| Comments: | My beloved husband was diagnosed with ACC the same week the World Trade Center was blown up. Surgery removed a 10 lb tumor and he was relatively cancer minimized for 2 years. We met a year later and were married two years later. Within a month his cancer acted up again and had spread to lung, liver, abdomin, and the original site scar tissue in his right kidney. He has worked with great folks at the Huntsman Cancer Institute and an alternative treatment center in Georgia. He worked with a naturpathic doctor and followed an organic/nutrition based program for a year. Though he is now disintegrating, he has survived for 4 years now. He had 3 small lesions in his brain this spring which were successfully treated with pin point radiation and they have diminished significantly and are looking like they are on their way out.
This will maintain his cognitive abilities for as long as the rest of his body holds out. He has been taking 40 grams of MSM daily which has kept his need for pain medication at a minimum. He has used meditation and Qi Gong to maximize his life energy and opportunities for healing. Though we may loose the war here in the not to distant future, we have had some successful battles. We have definitely extended his life and improved his quality of life. May all be well and may our combined prayers bring about the insights and information to turn around these outcomes into life saving stories and powerful successes. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Steve Abrams |
| E-mail address: | sabrams [at] neo.rr.com |
| Location: | Canton, Oh |
| How did you find this page?: | Referred to me |
| Comments: | I was diagnosed in 1998. I have undergone 2 forms of chemotherapy, some of so brutal it defies description and 7 surgeries for recurring tumors including a kidney removal. The last drug taken was Mitotane which rarely works but effectivley reduced previously inoperative tumors sufficiently to be removed. I am currenty well. I am scanned every quarter. I have purpose in life, so I will never quit.
The philosopher Nietzsche wrote, " He who has a 'why' to live for can bear with almost any 'how.'" |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | MARLA |
| E-mail address: | RJLORMAND[at]HOTMAIL.COM |
| Location: | LAS VEGAS |
| How did you find this page?: | TRYING TO FIND HOPE |
| Comments: | MY SON SCOTT WAS DIAGNOSED WITH ACC IN APRIL OF LAST YEAR. DUE TO THE RARITY OF THIS CANCER WE WENT TO MANY MDS, SOME OF WHOM EVEN REFUSED TO ACCEPT HIS CASE.WE FOUND A WONDERFUL CARING DOCTOR WHO SUGGESTED WE GO TO THE CITY OF HOPE IN DUARTE CALIFORNIA.WE ARRANGED FOR A VISIT, AND I AM SO THANKFUL THAT WE DID.I CAN NOT BEGIN TO DESCRIBE WHAT A
CARING, COMPASSIONATE, KIND STAFF THEY HAVE.THE HOSPITAL IS JUST BEAUTIFUL(ALL 112 ACRES)MY SON HAD SURGERY A FEW DAYS AFTER ARRIVAL,AND WAS DISCHARGED AFTER 5 DAYS. FOR PTS FROM OUT OF THE STATE THEY HAVE APTS. ON THE GROUNDS WHICH CAN BE RENTED FOR 50.00 PER DAY.I CANT SAY ENOUGH ABOUT THIS PLACE, IT HAS BECOME HOME AWAY FROM HOME. SO FAR 1 YEAR LATER HE IS DISEASE FREE, AND WE CONTINUE WITH EVERY 3 MONTH CHECK-UPS.FOR ANYONE STRUGGLING WITH THIS DIAGNOSIS ANDLOOKING FOR TRATMENT OPTIONS PLEASE CHECK OUT THE CITY OF HOPE WEB SITE.P.S. I HAVE BEEN A REGISTERED NURSE 23 YEARS AND I HAVE WORKED MANY LARGE HOSPITALS,SO PLEASE BELIEVE ME WHEN I SAY CITY OF HOPE IS GREAT! |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Victoria Mann |
| E-mail address: | vmann12[at]hotmail.com |
| Location: | Los Angeles |
| Comments: | My sister Elizabeth was diagnosed with ACC about three months ago. It was stage four, she had a 10 cm tumor, and it had metasticized to her lungs and liver. SHe had surgery to remove the tumor, but never recovered from it.
She died on May 28th, 2005, just 57 days from her diagnosis. She left behind four boys, ages 9 to 16, a husband, a mother and father, and myself, her sister. We are all trying to cope with the loss. I would love to cure this horrible disease, so no one else has to go through what she did. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Andrew E ( Aesop/Flickr ) |
| E-mail address: | mail[at]andreweason.com |
| Location: | Bristol, UK |
| How did you find this page?: | Flickr |
| Homepage URL: | http://www.andreweason.com |
| Comments: | How do.
I thought I'd have a look at your homepage after replying to the comments you left on my photos. I find the pop-up prayers option a bit limited so in addition to praying for your peace I will also pray for your continued enjoyment of kick-boxing and that the kids you're handing those noise-making bits and pieces out to at the Sunday school do indeed find their way into doing a spot of singing. (Kids that don't like to sing? I couldn't wait, myself, even if I did sometimes sing, er, alternative words) Glad your various results were good, too. See you on Flickr. Aesop. |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | Ashley Mire |
| E-mail address: | ashmire[at]cox.net |
| Location: | Louisiana |
| How did you find this page?: | |
| Comments: | I was diagnosed with ACC in 6/03 after 2 surgeries, radiation and lots of various types of chemos I am still battleing this horriable disease. I would like to share with anyone infromation regarding forms of treatments that are working for them. God Bless You. |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | lesley hanson |
| E-mail address: | lesley.hanson[at]tesco.net |
| Location: | UK |
| How did you find this page?: | surfing the web on adrenal cancer |
| Comments: | You are an inspiration to us all. take care live life to the full |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Wilson |
| E-mail address: | jlwilson[at]peoplescom.net |
| Location: | Texas |
| How did you find this page?: | scan net |
| Comments: | I am a 41 year old small town country guy who just went to the Dr a few days ago because of a nagging hunger like pain in my upper belly and a dull pain in my left upper back behind my ribs and sudden and extream nausea that comes and leaves two or three times a day. The dr ordered a CT scan and then she called and said I had a "growth" on one of my adrenal glands. She never said how big it was or anything but just said that MANY people had these "growths and that I should not worry about it and that she did not think it was the culprit of my symptoms. I ask her if it could be cancer growing and she said she didn't think so and that this type of "growth" is almost never cancer! I wish someone from here could advise me if they think I should see another Dr just what I should do at this point. It just seems to me that a "growth" inside someone is not right and could be deadly later in my years. I don't have alot of experience and need some advice.
Thank you in advance for helping me. (I don't know the right questions to ask the dr) Thanks again. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Cass |
| E-mail address: | cassd13[at]yahoo.com |
| Location: | NJ |
| How did you find this page?: | CSN |
| Comments: | Ooops...I sent before I typed!
Anyway, I am a 40yo/F diagnosed 7/02, stage 3. L adrenal and part of kidney removed in July 02. Disease free after diagnosis until 11/03. Disease spread to lungs, just a few nodules at first. Started Mitotane which kept disease stable for 5 months, but then more nodules were found. My local Onc said surgery not possible because of location of nodules. He only could offer a non specific phase 1 trial. I did some research and found the phase 2 trial I am on now. I began trial 12/04 and am now being readied for surgery sometime in July. Drs. are all great there and I have total confidence in them. I am married and have two kids that I WILL see graduate from HS and college!! Anybody who wants to talk or would like more information can e-mail me. Take care, Cass |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Cass |
| E-mail address: | cassd13 |
| Location: | NJ |
| How did you find this page?: | CSN |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | kostas sidiropoulos |
| E-mail address: | olympicflame@usa.net |
| Location: | Greece |
| How did you find this page?: | Flicr |
| Homepage URL: | http://pbase.com/bluewhite |
| Comments: | I wish to be a healthy and fun person.I shall pray for you.
I have lost my sister at age 52 last month. Searching my flicr I found your sensitive and helpful site. God with you. Regards from Greece. kostas |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Bea Brugge |
| E-mail address: | bluemanatee1202@sbcglobal.net |
| Location: | Kent, Ohio |
| How did you find this page?: | surfing |
| Comments: | My Mom was just diagnosed with Adrenal Cancer about a week ago and the family is in complete shock. They told her that she has 4 large tumors in the stomach area. They have her on Chemo(pill form), nausea pills, and steroids (because the doctor said that the chemo will kill the adrenal gland), Morphine, Oxycontin and Vicodin. Well she just went to see her specialist this past Friday and he told her that she is in Stage 4 and that he doesn't see her making it to Christmas. The whole family has been coming together to see what we can do, or who we can call....It is so upsetting to see her in so much pain and there is nothing more that anyone can do. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | janet paschette sarge |
| E-mail address: | janni143@earthlink.net |
| Location: | florida |
| How did you find this page?: | internet surfing |
| Comments: | my husband died 6 years ago stage4 he lived 75 days after diagnosis radiation and chemo were intended to prolong life after a prognosis of 1-5 year survival metas in liver lung lymp nodes surgery was never and option although that is what he wanted most my children are now 12 and 15 and ask if this is hereditary i dont know |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | DIane Lawrence |
| E-mail address: | dlawrence@browandcrouppen.com |
| Location: | St. Louis |
| How did you find this page?: | web directory |
| Comments: | I am the mother of a survivor. My son was born with an adrenal cortical carcinoma. He was diagnosed with Stage III at 6 months old and underwent resection. He will be 5 years old in September of 2005 and is cancer free. We thank only God for this miracle. My prayers are with you also. |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Liz |
| E-mail address: | lizweaver99@hotmail.com |
| Location: | Massachusetts |
| How did you find this page?: | searching the web |
| Comments: | I am an adrenal cancer survivor, hoping for continuing positive follow ups! I am also trying to compile some info on adrenal cancer / treatment / cancer centers. If anyone out there has a free minute, please let me know where you had your surgery and any information on what hospitals are the best for this type of cancer treatment / research.
Also any info on doctors who are specifically dealing with acc. thanks so much!!! Liz |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Robin Whiting |
| E-mail address: | rjwhiting[at]att.net |
| Location: | Woodland, California |
| How did you find this page?: | Web Search |
| Comments: | Thanks for your efforts !
It is hard that this cancer shows up in young folks in the prime of thier lifes. When I read the stories I am reminded how each patient is someones loved one- father,mother, son, daughter, husband, or wife. It breaks my Heart and leaves me wanting for answers. To all of those that are struggling, that have gone, that are left behind: You are with me in my prayers. peace, Robin |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | kelley stephenson |
| E-mail address: | kelleywhooo@aol.com |
| Location: | valdosta ga |
| How did you find this page?: | my mother |
| Comments: | i was diagnosed today 5/11/05
like you they (dr) said he had never seen anything like it. i had pain in my back on the right side. i went for scans,mri,x-ray,ultra sound. the tumor is 12 cm and today i had catscan with contrast which showed the tumor on my adrenal gland. i am with you kelley |
| I am: | newly diagnosed. |
| I will be praying for your: | peace. |
| Name: | Dr. Thomas Giordano |
| E-mail address: | giordan@umich.edu |
| Location: | Univ of Michigan |
| How did you find this page?: | surfing about Adrenal cancer |
| Homepage URL: | http://www.pathology.med.umich.edu/giordano_lab/adrenoctumors.htm |
| Comments: | Very glad you are doing well and trying to raise awareness about ACC.
tom giordano |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | nina kidney |
| E-mail address: | theneen26@aol.com |
| Location: | new jersey |
| How did you find this page?: | on line |
| Comments: | i would love to here from someone else who has ACC and to share information pertaining to this Cancer. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Judith Ager |
| E-mail address: | Chq247@aol.com |
| Location: | Racine, Wisconsin |
| How did you find this page?: | webmd.com |
| Comments: | non yet |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Mark Deibert |
| E-mail address: | parrothead1860@yahoo.com |
| Location: | WI |
| How did you find this page?: | surfing |
| Comments: | My daughter Rachel was diagnosed three years ago with ACC while she was pregnant. DR. removed adrenal gland and tumor. Baby was born a few months later. Very healthy. Her tumors came back, lots of chemo, clinical studies, radiation. Could'nt do surgery because of location of tumors. It's been two years and no positive results. Still praying and waiting. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | nina kidney |
| E-mail address: | theneen26 [at] aol.com |
| Location: | new jersey |
| How did you find this page?: | surfing |
| Comments: | please feel free to write to me , I would love to share my story |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Jessie |
| E-mail address: | JFurry128 [at] yahoo.com |
| Location: | CT |
| How did you find this page?: | |
| Comments: | My mother died from adrenal cancer over a year ago, she was 58. It broke my heart when I found out how rare this disease is. She was diagnosed only 9 weeks before her death. I am 20 years old now and I am happy to see a site like this one that shows so much hope. I will pray for you to stay heathly for the rest of my life. |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | Chie Gondo |
| E-mail address: | gondochie [at] gmail.com |
| Location: | Kyoto and Honolulu |
| How did you find this page?: | Arlyn's flickr |
| Homepage URL: | http://tropicalize.com/ |
| Comments: | Aloha. Arlyn,
Thank you for your comments on Flickr. It always makes me happy. I browsed this site and I was so impressed your way of life. Actually, my great-uncle is cancer survivor also. Cancer therapy(especially mentally) in Japan is developing. I'm going to Honolulu in a few month, and I'll keep to show you my photos on Flickr from Hawaii and Japan. Also, I hope we'll talk together someday, and if you have a chance please visit japan and kyoto Love and aloha, Chie Gondo:) |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | Jessica |
| E-mail address: | lusugabear02 [at] yahoo.com |
| Location: | Virginia |
| How did you find this page?: | surfing |
| Comments: | I would just like to say that I will keep you in my prayers. My aunt was diagnosed with ACC in the spring of 2004 and she passed away on January 12, 2005. It was hard for me to understand the fact that there is no cure for this rare form of cancer. I am now involved trying to do all that I can to help find a cure or make the public more aware of it. I am doing a project here at college on ACC and thanks to your website, I now have the information that will help me. Please continue to be that light that continues to burn in this dark and dim world. You are an inspiration and blessing to many people who have either been diagnosed with this cancer or affected by it someway. I pray that God will continue to bless and keep you! |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Anita |
| E-mail address: | cheetah3r [at] yahoo.com |
| Location: | Savanna, IL |
| How did you find this page?: | surfing |
| Comments: | I have a friend that has ACC, she was diagnosed last year and had the large tumor removed and went through a year of chemo. Now the cancer has spread to her liver and uterus. She is 41 years old and has 2 beautiful little girls, 5 and 9 years old. She also has a wonderful husband that lives for her. We got news yesterday that the chemo is not working and she has been in the hospital now for about 7 weeks. They have had her on a new experimental drug, but it costs $2500.00 a month and the insurance does not pay for it. We have a small town and the whole town is trying hard to help her out, but I just can't imagine the expense. Please PRAY for my friend, Ramona.
Thanks and God Bless!!! |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | leslie |
| E-mail address: | gouldbruner [at] comcast.net |
| Location: | MA |
| How did you find this page?: | a friend |
| Comments: | Vital to have friends out there engaged in the struggle and not be a voice alone. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | John Christ |
| E-mail address: | jackchrist [at] comcast.net |
| Location: | Chicago,Il |
| How did you find this page?: | From google |
| Comments: | Just wanted to wish you all the best.I was diagnosed in March of 1996.Was operated on for the removal of the tumor and was told it was as big as a softball.The doctor sent the tumor to Mayo Clinic because he had never seen one before and was told that it was ACC and he probably would never see it again.After being CT scanned and MRI'd for the last 9 years i am still doing ok .I wish the best for all of you.Good Luck
John |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Chris Shirley |
| E-mail address: | LHBCNS [at] aol.com |
| Location: | Toccoa, GA |
| How did you find this page?: | Search |
| Comments: | Hi,
I am a widower and I have met a wonderful friend up in MIchigan, who is widow herself. She is also battling adrenal cancer and I am looking for any thing that would be helpful for her. You will be in my prayers! Blessings to you, Chris |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Brigtte |
| E-mail address: | b.groves [at] sussex.ac.uk |
| Location: | UK |
| How did you find this page?: | Google search |
| Comments: | My sister in law was diagnosed with Adrenal Cancer in January 05 following removal of the tumour last November. It has spread to the bone,liver and lung.
It seems to be such a rare cancer we are finding it very difficult any survivors! It would be great to have contact with anyone who may have or had Adrenal Cancer. We are currently looking into Mitotane trials...grasping at straws maybe...but we have to do something other than just sit and wait. Any emails welcome Take care all xx |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Tara Wills |
| E-mail address: | tydybutrfly [at] excite.com |
| Location: | Arizona |
| How did you find this page?: | internet browser |
| Homepage URL: | http://www.excite.com |
| Comments: | I will be praying for all the above on that last statement. My aunt was recently diagnosed with cancer of the breast, lung and now the adrenal gland. I was surfing the net to find out more about the disease to the adrenal gland and stumbled across your website. My heartfelt thoughts and prayers are with you. Good luck in all your endeavors on your journey for a cure and for contentment within yourself as you contiue to fight this disease. Thanx for sharing your experience so that others like myself can learn. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Teresa Dickson |
| E-mail address: | tdluckylady [at] aol.com |
| Location: | Wisconsin |
| How did you find this page?: | cancer |
| Comments: | Hi, I was just diagnosed with the same cancer 1/12/05, I went to the ER with abdominal tenderness to find out that there was a adernal tumor that had attached itself to the liver and kidney, grew into my vena cava and my heart... 80% chance that sugery could not be done and if so they may have to shut me up right away because they can't get to it, well we went for it, they said that I would lose my kidney and half of my liver... I woke up and still had them both, after the bypass the swollen went down and the were able to remove the encapsulated tumor... I had a ct down just recently and they found 2 blood clots in my lungs and 2 nodules???, we will not know for sure if these are really bloodclots or tumors until 4/27/05, when I go in for my three month mark... I am now on some blood thinners and an anti-depressant. I finally go back to work next week, but I am so scared that this is the end...
They say that this is one of the most agressive cancers there is and not enough research so yes I am signing the paper to send. It was nice to read your story. Thank You, Teresa Dickson |
| I am: | newly diagnosed. |
| I will be praying for your: | peace. |
| Name: | Joe |
| E-mail address: | jnjhess [at] gci.net |
| Location: | AK |
| How did you find this page?: | Researching |
| Comments: | Good morning everyone!!!!
It's a wonderful day. Every day that I open my eyes, am still breathing, is a wonderful day. I am in the same boat as most...recently diagnosed (Feb. '05) and radical resectioned (Feb. '05) with ACC. I am 48 years old, a wonderful wife and 6 great children. Enjoying every minute!! |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Liz Weaver |
| E-mail address: | lizweaver99 [at] hotmail.com |
| Location: | MA |
| How did you find this page?: | yahoo.com |
| Comments: | Thanks for all the info. I am home right now recovering from surgery to remove a 15 cm., 18lb. malignant adrenal tumor. So far all tests show the cancer did not spread. However, from what I have learned on-line, I need to learn a lot more. Your website is so helpful, thank you.
I plan on becoming active in the battle to find a cure for adrenal cancer and make sure more money is allocated for research. Thanks again, Liz |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Susie Stone |
| E-mail address: | stoners [at] keyway.net |
| Location: | Covina, CA |
| How did you find this page?: | Dawna Burt |
| Comments: | Hi Arlyn,
I am a long time friend of Dawna Burt. We have know each other since we were about 17 years old (so that's about 17 years). Over the years, she has told me about you and your courageous fight against ACC. As you know, her mom recently passed away from cancer. It's still a shock to think that Pat is gone. She meant so much to so many people. She inspired me to be a great mom, like she was. When Pat passed away, my family and I wanted to make a donation in her name in lieu of flowers. Dawna asked us to donated to ACC research so it might benefit you. So that's what we did today and since you were on my mind, I just thought I'd email you to say hi. I've looked thru your webpage and it's very inspirational. You've been able to lead a beautiful life in the midst of what I consider tragedy. God bless you and keep you healthy. P.S. Happy St. Paddy's Day! :) -Susie Stone- |
| I am: | a friend. |
| I will be praying for your: | sanity. |
| Name: | rona |
| E-mail address: | krazyrona [at] yahoo.com |
| Location: | slidell ,La |
| How did you find this page?: | web search |
| Comments: | My husband was diagnosed with colon and adrenal cancer, Jan. 04. Both tumors were not related..(differnet cancers).
He just completed 32 treatments of chemo thearpy. We are constantly reminded of the fear every six months with extensive testing on him to monitor the adrenal. The tumor was 5.5 centimeters which put him in stage 2. All lymphnodes tested negative. One unexplainable thing about the adrenal cancer, the tumor was bleeding within itself and was actually killing itself of all blodd supply. My husband retired two years ago from the Marine Core. Doctors think that the adrenal cancer is from enviromental exposure to toxic chemicals (dessert storm). I pray for you all and wish you the best. He has been taking supplements that has helped him drastically. Grape seed extract co Q 10 green tea extract |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Rebecca |
| E-mail address: | rmontange [at] yahoo.com |
| Location: | CO |
| How did you find this page?: | parents |
| Comments: | In 1998 my mother found a lump on my sister's side. One week later they tried to take it out and failed. Five days after that attempt, the diagnosis came back as ACC. The tumor was the size of a football and weighed ten pounds. Even though there was no sign of metastases, the doctors called it Stage 4. After that, nothing was the same. She endured four months of a combination therapy including cisplatin, carboplatin, etoposide, and mitotane. The mitotane killed the tumor - literally. The thing went necrotic inside of her. They sent her into surgery, and though it took 15 hours, thye were able to remove it, taking her kidney, a lobe of liver, a piece of colon, and a piece of her inferior vena cava with it. But she survived. She was 15 when she was diagnosed.
Two years later (2000) it came back again...apparently it had invaded a nearby lymphnode and had finally grown enough to be detected by CT scans. They took it out, gave her another four months of mitotane, and all was quiet until 12/27/04 when her CT came back with another spot. Last month she had that tumor removed, as well as part of her pancreas and her duodenum (Whipple procedure). She had to go back to the children's hospital because the adult surgeons felt that the mass was all but inoperable and refused to touch her. She has now elected to take another course of mitotane, for eight months this time. It is not clear to me or my parents that this will do her any good. I was waiting until after you got your own CT results back to sign your book, and I was desperately hoping that they'd come back negative. My dad found this site and refered me to it shortly after her latest rounds of surgery. It was the only beacon of hope we've been able to find in this mess. All the other information we've found has said the same thing: no cure, no survivors - it made it sound like my sis had already lived abut five years too long. I am currently in graduate school trying for a doctorate in biochemistry. Curing adrenal cancer is my goal in life. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Karen Core |
| E-mail address: | karicore [at] houston.rr.com |
| Location: | Richwood, TX (55 miles S. of Houston) |
| How did you find this page?: | search of adrenal cancer |
| Comments: | I have not been diagnosed, per se--but am gaining information re: adrenal cancer-which, in all probability, will be the diagnosis. I am undergoing extensive tests. My local Doctor sent me to Houston for further tests, surgery, and transplants, as needed. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Stan Hazlewood |
| E-mail address: | stancy [at] cox.net |
| Location: | Tyler, TX |
| How did you find this page?: | Browsing |
| Comments: | My wife was recently diagnosed as having stage IV adrenal cancer. It was quite large: 17cm x 10cm. It had "attached" itself to her liver and her diaphragm. The doctor doing surgery said he removed all he could see.
She has been put on a drug called Mitotane. This drug is one of the few that directly targets this type of cancer. We plan on an aggresive follow up routine with MRI's (I understand CTscans can be dangerous when performed routinely. We also plan on alternative treatments and I have been researching them on the web. We're very positive and hope to become cancer free and remain that way. May God Bless you in your fight against this terrible disease. Stan Hazlewood stancy@cox.net Tyler, TX |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | chad stephenson |
| E-mail address: | chadsmobel [at] yahoo.com |
| Location: | somerset, ohio |
| How did you find this page?: | surfing |
| Homepage URL: | http://users.clover.net/cre8tive |
| Comments: | Your site is great; I'm working on a site of my own for my 6-year-old son Hunter. Which in October of 2004 had surgery to remove (ACC) his left adrenal gland and some surrounding lump nodes after surgery they did a follow up CT, which revealed a small spot on his lung, which was also removed, also stage 4.
Hunter turned 7 in January 16th, He is back to school now and on a treatment of Mitotane. Make-a-wish granted him a trip to Disneyworld last night, he is very excited. We will put you in our prayers. I would love to add your site as a link, on Hunters if you wouldn't mind? it is under constuction currently but posted if your interested in taking a sneek peek. Chad |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Tina |
| E-mail address: | stillhere4today [at] yahoo.com |
| Location: | Florida |
| How did you find this page?: | search on google |
| Comments: | I started looking at this site after I got a e-mail (yes just a e-mail) that my brother had past away on 1/31/05 from this cancer, at the current time , I have been having unresolved problems with my liver and the doctors are unsure as to why my Liver test alway come back elevated, my brother was the secong in the family to surcome to cancer.
Just keep me in mind while I struggle with my own health and the loss of the brother that I didnt even get to say goodbye too. |
| I am: | a caregiver. |
| I will be praying for your: | sanity. |
| Name: | susan wade |
| E-mail address: | suewade [at] alltel.net |
| Location: | pa |
| How did you find this page?: | looking for info on adrenalcortical carcinoma |
| Comments: | My daughter was diagnosed with stage 4 adrenalcortical carcinoma just a month ago and we are learning alot about the lack of info and the stregnth and support of our community |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Vince Pedroia |
| E-mail address: | vpedroia [at] monitor.net |
| Location: | Sebastopol, CA |
| How did you find this page?: | web search |
| Comments: | Hi, Arlyn --
Just found your web page. Thanks for all of the information! You are on the ACC web group, right? Think I've seen your messages. Love the necklace, and your efforts. We'll be ordering.... Thank you. Vince and Trisha Pedroia |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Anthony Koziol |
| E-mail address: | anthonykoziol [at] cox.net |
| Location: | Omaha, NE |
| How did you find this page?: | Reading |
| Comments: | I tryed to e-mail but it was too many bites. I will try again. Tony Stephanie's Dad. |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | kane |
| E-mail address: | kaneblues [at] yahoo.com |
| Location: | Hawaii |
| Homepage URL: | http://www.esotericbowl.com/ |
| Comments: | Hi Arlyn!
I do enjoy reading your journal, although I do wish that you posted more frequently. :) Hoping that you are having a great weekend~ |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | Troy Richards |
| E-mail address: | Troy@4realarizona.com |
| Location: | Scottsdale |
| How did you find this page?: | |
| Comments: | Hi,
My name is Troy Richards and I in May of 1999 I had a tumor also the size of a football removed with my left kidney. Yes it was ACC. I've had CT scans every 3 months for basically 5 years and fortunately my doctor found a spot on my lung that looked suspicious. I had it removed 3 weeks ago and unfortuntely it was ACC again. I thought you'd be interested in my story and if I can help with the cause please let me know.We are also looking for alternative treatments and trials. Thanks, Troy |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Reggie Quinteros |
| E-mail address: | tottotoo@hotmail.com |
| Location: | Fontana Ca |
| How did you find this page?: | Daily Bulletin |
| Comments: | In Febuary of 2004 my wife ( Laraine Quinteros was diagnosed with ACC. On November 2004 she passed away.
I just would like for everyone in this world to know that the place she worked at gave us so much loving support, that they need to be recognized. The entire Etiwanda school District in Rancho Cucamonga Cal, will forever be in My family's thoughts and prayers. Superintendent Shawn Judson, Child Nutrition Supervisor Connie Dineen, and all the ladies who work in the kitchens for the Etiwanda School District became the big shoulder that my family and I leaned on at the time we needed it most. On January 26th, Connie and the wonderful people from Child Nutrition, Planted 2 Rose Trees and a Memorial stone in the school yard, and hung another framed memoral picture of Laraine in the Kitchen at Etiwanda Middle School. It was so wonderful to see Laraine Honored by so many people that she touched....She truly was a wonderful person. And the Etiwanda School District truly is a wonderful Orginization. Reggie, Matt,and Ryan Quinteros |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Tracy Nassar |
| Location: | Colorado |
| How did you find this page?: | |
| Comments: | Arlyn,
I just feel compelled once again to thank you for all you are doing for the treatment and advancement of ACC. I visit your site frequently and hope that with all our efforts we can change the statistics of ACC. Thank you for providing myself as others with the comfort of your site. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Allison Weber |
| E-mail address: | aweber1@new.rr.com |
| Location: | Green Bay WI |
| How did you find this page?: | internet |
| Comments: | I was diagnosed in 1997 with adrenal cortical carcinoma, I was 16 years old. I had an 8lb tumor on my left adrenal gland and the doctors didn't know it was cancer until after my surgery. I have some complications because no one knows much about the cancer. Mayo Clinic calls me "A walking miracle" It's hard to handle when no one knows anything. But having a good attitude about life is a good start! |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Steve Owens |
| E-mail address: | sowens@woh.rr.com |
| Location: | New Lebanon, Ohio |
| How did you find this page?: | Yahoo Search |
| Homepage URL: | http://www.sowens.net |
| Comments: | I still await a positive diagnosis to exactly what is wrong with me and pray that I do not have ACC. I became ill after Christmas and went to the doctor a week later. While doing a routine CT Scan to see what might be wrong, they found a tumor on the left Adrenal Gland. That is when I first heard the words Adrenal Carcinoma.
I am now on my third week and still no clear answers. More tests today but still no answers. I get the feeling this is hurry up and wait. |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Michael McAlister |
| E-mail address: | mikeymac152002@yahoo.com |
| Location: | Miller Place NY |
| Comments: | I think the site is great. Im on way way to a full recovery from adrenal cancer. I was in Sloan Kettering and am so greatful for everything I have now. The site is great and Im glad to see all the support out there.
God Bless |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Michele Hartinger |
| E-mail address: | MeShellMyBell08@aol.com |
| Location: | New york |
| How did you find this page?: | Clicking around |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | april therese panaligan-peralta |
| E-mail address: | aldoaprilp2000@yahoo.com |
| Location: | philippines |
| How did you find this page?: | |
| Comments: | dearest arlyn,
i wish i had open your email sooner. im so sorryi didnt have any email at home i;m in a computer shop to access my email. i'll keep in touch more often. i,m very proud of you for your strength an making this website for adrenal cancer. remember the Lord clearly has a purpose for everything. i'll be praying for you! i love you! love ate april |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Catherine C. Renteria |
| E-mail address: | cr71@juno.com.nospam |
| Location: | Lancaster |
| Comments: | Arlyn,
My dad had his surgery done in Aurora Medical Center South-I think. I really don't know the other options but my dad decided to have the surgery. Most people suggested the surgery...do you think that was a good choice? After reading the article it sounds like you're an expert about these things. I just know you as " good, ole, kind, and funny Arlyn". You sound so professional in the article and I know you are but I just don't know that side of you. (You always did the silliest things when we were young!) I'm so glad for you!! I hope you will get the response you want and need. Let's plan to get together! I don't know exactly when yet- I took up all my vacation time for the trip to Colorado. I'll call you! You take care! |
| I am: | a friend. |
| I will be praying for your: | peace. |
| Name: | Stacey Adamek |
| E-mail address: | sadamek@cox-internet.com |
| Location: | TEXAS |
| How did you find this page?: | Web Search (MSN) |
| Comments: | Thank your for your story and standing up for yourself and those who cant my signature for the petition is in the mail. |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Kevin B. |
| E-mail address: | N/A |
| Location: | Chino Hills |
| How did you find this page?: | You |
| Comments: | Dear Miss. V,
I used to know you as a teacher, but now I know you as a ACCCancer Survivor. Just to tell you the whole class will be supporting you all the way. It's just sad that some people are living in fear because they have rare viruses. Such as your's. May PEACE be with you> Sincerly, Kevin |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Ruth Dial |
| E-mail address: | onlygirlof4 [at] adelphia.net |
| Location: | Diamond Bar |
| How did you find this page?: | she gave it to me |
| Comments: | Arlyn, I miss you alot! We have to get together when you have time, ok? You know where I'm at so please give me a call. I hope all is well with you and your family!!! Sorry I missed the reunion! Next time, ok? Take care... miss ya! |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | cindi o'bryan |
| E-mail address: | cindiobryan [at] excite.com |
| Location: | new york |
| How did you find this page?: | looking for info on acc |
| Comments: | my neice age 21 just dx. with acc. i was looking for info and came across you. beautiul pics. i will continue to look into your links. thank you and God bless. cindi |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Jackie Blakeley |
| E-mail address: | jackie[at]larryblakeley.com.nospam |
| Location: | Dallas texas |
| How did you find this page?: | CANCER WEB PAGE |
| Homepage URL: | http://www.lori.blakeley.name/lori_medical_updates.htm |
| Comments: | HI ARLYN, I'M LORI'S MOM. LARRY, MY HUSBAND HAS BEEN IN CONTACT WITH YOU ABOUT LORI'S CONDITION. I WILL PRAY FOR YOUR CONTINUED CANCER FREE STATE AS I DO FOR LORI'S. THANKS FOR YOUR WEBSITE AND ADDING LORI'S ALONG WITH IT.
|
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Diane |
| E-mail address: | diane85 [at] gmail.com.nospam |
| Location: | bahay ko =) |
| Comments: | happy new year ninang ayim! i love you =) |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | kane |
| E-mail address: | kaneblues[at]yahoo.comnospam |
| Location: | Hawaii |
| How did you find this page?: | Santa told me :) |
| Homepage URL: | http://www.hawaiistories.com/kane/ |
| Comments: | Stopping by to wish you Happy Holidays.
Have a Very Merry Christmas~ |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Robin Bogue |
| E-mail address: | Hotmamma[at]yahoo.comnospam |
| Location: | Albuquerque,NM |
| How did you find this page?: | search web on adrenal gland-adenoma |
| Homepage URL: | http://webmd.com |
| Comments: | I'm a breast cancer survior, and just recently have been told that a Cat scan has shown a tumor/mass on my adrenal-gland-adenoma |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Minna |
| E-mail address: | minnna[at]hotmail.comnospam |
| Location: | Honolulu, HI |
| How did you find this page?: | Marion |
| Comments: | Aloha Arlyn, I'm Marion's sister. You're doing a wonderful thing for so many others. I'm so proud of your efforts. Thank you for educating me on this rare disease. May you find support and success throughout this journey. Minna PS. Enjoyed your photos! |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Craig Hughes |
| E-mail address: | craig[at]hughestrailers.comnospam |
| Location: | Portales NM |
| How did you find this page?: | a friend |
| I am: | newly diagnosed. |
| I will be praying for your: | health. |
| Name: | Reggie Quinteros |
| E-mail address: | tottotoo[at]hotmail.comnospam |
| Location: | Fontana Cal |
| How did you find this page?: | Daily Bulletin |
| Comments: |
My wife was Diaginosed 2/2004 at stage 4,and passed away 11/14/2004,She had surgery to remove the tumor, but the cancer had spred to 70% of her right lung, and 30% of her left lung. My thoughts and loving prayers go to anyone who is going through what we went through. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Leni Villanueva |
| E-mail address: | levill143@yahoo.comnospam |
| Location: | Wisconsin |
| How did you find this page?: | I visit this evry now & then |
| Comments: | I got the Daily Bulletin news about your courageous fight on ACC and I am very impressed. What you are doing is a Herculean job and most of us do not even have any idea what you're going through. You are able to communicate to these people and and touch their lives like a magic wand and guide them, and help bring a ray of sunshine in their darkest hours. I tell you are one amazing person and I am so lucky to know you and to love you. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Zeljko |
| E-mail address: | zeljko@zeljko.comnospam |
| Location: | Hong Kong / Berlin |
| How did you find this page?: | |
| Comments: | Your strength is a real inspiration. I hope you beat this terrible disease.
My mother was diagnosed with ACC in Dec. 2004, and the doctors here in Europe do not know any more how to handle the disease than in the US. We are to talk to a doctor at the world-famous Charite Hospital in Berlin who presumably is working on a treatment scheme. I would be keen to hear from anybody who knows of hospitals that have true ACC expertise. The MD Anderson in Houston seems to be the leader. |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Lois B. Klein |
| E-mail address: | L:RAzzle@aol.comnospam |
| Location: | Phoenix, AZ |
| How did you find this page?: | Surfing fro clinical trials |
| Comments: | My daughter was diagnosed with ACC at age 29. After initial 2 surgeries to remove the adreanl gland, she lived a healthy and normal life for 8 yrs. without chemo or radiation. She married and had a normal pregnancy. When she finished breastfeeding at age 37, she went for a routine CT scan and they found fluid in her lungs. One year later she is lying in a hospital in CA. with metastatic disease in her spine and lungs and is now unable to walk. We are hoping for God's mercy and for a miracle. |
| I am: | a caregiver. |
| I will be praying for your: | peace. |
| Name: | Terry Huot (IM) |
| E-mail address: | Ashleehuot@aol.com |
| Location: | Bakersfield |
| How did you find this page?: | Puthy (sister) |
| Comments: | Hi Arlyn,
I miss you and I hope to see you soon. I love your website but I'm very shock. Love, Terry & family :) |
| I am: | a friend. |
| I will be praying for your: | health. |
| Name: | Chris S. |
| E-mail address: | clownfish_53@yahoo.com |
| Location: | WI, USA |
| How did you find this page?: | planet cancer |
| Homepage URL: | http://www3.caringbridge.org/wi/clownfish79 |
| Comments: | hello miss....you seem to have the most wonderful look towards life. i also have 'c' i have stomach 'c', i am a 25yr old female. i saw your post at planet cancer....they say i am uncurable-inoperable--yet i refuse to believe it. i lead the optimistic attitude and say i will prove my docs wrong with a good attitude. i say that i got this cancer to help others around me, beat it-and prove the docs wrond, and move on to help others with this beastily disease....i do my best to advocate for young adults with cacner. i am trying to get more involved with it--spread my HOPE and positiveness to others who really nead it. i feel that is my reasoning to be here on earth.....i will kick this 'c' and move on to work for a non-profit organization maybe like ACS or something like that. i think you to or alot like me and how you want to help others and advocate for cacner.....way to go!!! keep up the good work (: sincerely chris |
| I am: | a survivor. |
| I will be praying for your: | health. |
| Name: | Ercih Hirsch |
| E-mail address: | marthahi2@aol.com |
| Location: | Portland Oregon |
| How did you find this page?: | general search |
| I am: | a caregiver. |
| I will be praying for your: | health. |
| Name: | Diane |
| E-mail address: | dpvillanueva@csupomona.edunospam |
| Location: | chino |
| How did you find this page?: | from my ninang |
| Comments: | Ninang Ayim! i always enjoy looking and reading what's on your website. Take care, Ninang Ayim, i love you! see you in school! love, diane |
| Name: | MANUEL DEL GADO |
| E-mail address: | YNK57@AOL.COMnospam |
| Location: | BKLYN. N.Y |
| How did you find this page?: | MY wife found this web site |
| Comments: | ON JULY OF 2002. I WAS DIAGNOS WITH ADRENAL CANCER ON OCT OF THE SAME YEAR I HAD SURGERY TO REMOVE A TUMOR ON MY ADRENAL GLAND AND LEFT KIDNEY.A YEAR LATER I FOUND OUT THAT THE CANCER HAD SPREAD TO MY LIVER, BOTH LUNGS AND PART OF MY SPINE.AFTER FOUR MONTHS OF CHEMOTHERAHPY MY DOCTORS TOLD ME THAT THE CHEMO DIDN'T WORK FOR ME. SO NOW I'AM LIVING ON PAIN MEDICINE. I'AM NOW TRYING TO ENJOY MY LIFE CLOSE TO MY WIFE ,kids and family and friends. I LIVE A LIFE OF FAITH AND I KNOW THAT GOD WILL HEAL ME OF THESE ILLNESS. MAY GOD BLESS. |
| Name: | Kathi Hammersley |
| E-mail address: | khammersley@triad.rr.comnospam |
| Location: | Greensboro, NC |
| How did you find this page?: | my sister-in-law told me about it |
| Comments: | I survived ACC three years ago (12 cm. tumor - had surgery to remove my left adrenal gland with a follow up treatment of 6 cycles of chemo). It has now returned in my bones and I am facing round two of chemo. I would love to hear from anyone who has beat a bone metastasis. |
| Name: | Ellen Auerbach |
| E-mail address: | eauerbac@nycap.rr.com.nospam |
| Location: | Niskayuna,NY |
| How did you find this page?: | internet |
| Homepage URL: | http://alisonauerbach-barr.org/ |
| Comments: | My daughter Alison was diagnosed with ACC in her seventh month of pregnancy.
For her it was to advanced when it was found and she had no chance. OnSept 5, 2003 they did a C section and my granddaughter Rebecca Mayim Auerbach-Barr was born. She was only 3 pounds 9 oz and very sick at birth. Alison only saw her daughter 2 times and then we had her moved from Albany Med Hospital in Albany NY to Sloan Kettering in NYC. There she was treated by Doctor Deborah Schrag. She was very weak from the surgery and her body could not fight the cancer nor the infection from the c section. Alison died on September 21,2003 two days before her 29th birthday. In her case they feel the hormones from pregnancy made the cancer grow very quickly. In August 2003 she was scuba diving and swimming and then she began to feel very weak and could not eat. We too were told that this was a one in a million cancer. Rebecca, my grandaughter is doing wonderfully. She spent the first 3 months of her life in the NICU at Albany Med. then came home on oxygen. Sheis a fighter like her mother and our miracle baby. We were all and still are devastated by what happened. Alison was a wonderful human being and similar to you she enjoyed life and loved people. I would love to help you to inform people about ACC and I will certainly sign your petition. I hope you are doing okay. My thoughts are with you Ellen Auerbach |
| Name: | Terrie Sonntag |
| E-mail address: | joeterrie@sbcglobal.net.nospam |
| Location: | So.California |
| How did you find this page?: | WebSearching |
| Comments: | My sister-in-law was just diagnosed with ACC. She lives in Iowa and our hearts ache because we can't be close to her while she is going through all sorts of emotional feelings. Your story is amazing and I admire your courage. I hope my siste-in-law finds the same courage to fight this terrible disease. |
| Name: | Leni Villanueva |
| E-mail address: | levill143@yahoo.com.nospam |
| Location: | Miwaukee |
| How did you find this page?: | I followed the sun |
| Comments: | I am happy to be connected in your website once again and to be updated on what's happening here and there. It is so amazing and truly inspirational for all. I love you !! |
| Name: | jeanine tovar |
| E-mail address: | beanga4@aol.com.nospam |
| Location: | atlanta georgia |
| How did you find this page?: | just looking |
| Comments: | i'll be praying for you, and thank you so much for your help. |
| Name: | Jenny Taylor |
| E-mail address: | yellerjeeper@yahoo.comnospam |
| Location: | VA |
| How did you find this page?: | surfing/doing research |
| Comments: | My dad passed away on 10-4-04 at age 50 after a very brief battle with ACC. He was diagnosed 8-06-04 after a surgery to remove a 16-17 cm mass from his adrenal gland. At the time of surgery, the cancer had not metastasized to the rest of his body...there were only very small spots on his liver. Eight weeks later, we are dealing with his sudden death due to an extremely rapid and rare spread of disease. Just wanted to let you know we are having memorial contributions sent to MD Anderson to assist in the fight for an effective treatment for ACC. Also, to all the families out there dealing with ACC, my email 'door' is always open. Feel free to contact me if you want information on docs, treatment, resources or if you just need to vent. God bless.
yellerjeeper@yahoo.com |
| Name: | Tracy Nassar |
| E-mail address: | t..nassar@marketwise.comnospam |
| Location: | Colorado |
| How did you find this page?: | |
| Comments: | My father was diagnosed in Aug 03 with ACC. We have been blessed with another year with my him and hoping for many more. He had surgery in 03 and follows up with scans every three months. There is a great book by Fred Scribner on ACC that is very inspirational. He has survived for over 19 years. With all our prayers, we hope to cure all our loved ones.
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| Name: | Cousin Ruth |
| E-mail address: | onlygirlof4@yahoo.comnospam |
| Location: | Diamond Bar |
| How did you find this page?: | she gave it to me |
| Comments: | Hey "A"!!! |
| Name: | mina |
| E-mail address: | ckbhp@allstate.com.nospam |
| Location: | las vegas, nv |
| How did you find this page?: | from aura |
| Comments: | hi arlene!
we need to get 2-gether when i'm in town or vice versa. i relocated to vegas about 4yrs ago. so much time has passed....we have a lot of catching up to do. you've always had a zest for life ever since i've known you! i'm not surprised in how you've dealt w/this cancer. you've stayed positive and did not allow it to stop you from enjoying life! hope we can hang out soon...i'll call you next time i have plans to be in cali. |
| Name: | Courtney Zamorano |
| E-mail address: | courtney_zamorano@hotmail.com.nospam |
| Location: | Dallas, TX |
| How did you find this page?: | Friend |
| Comments: | A coworker's friend was just diagnosed with ACC and she sent your link to us. I am really inspired by your hope and spirit. It's so easy to forget to appreciate all the things I have been blessed with, but your story reminds me to appreciate every moment. Best of luck to you!
Courtney |
| Name: | Mandy Stahl |
| E-mail address: | amanda_stahl@luckybrandjeans.com.nospam |
| Location: | New York, NY |
| How did you find this page?: | friend |
| Name: | Hannah Webster |
| E-mail address: | pilotgirl105@hotmail.com.nospam |
| Location: | Melbourne Australia |
| How did you find this page?: | search engine |
| Comments: | Hi Arlyn, I hope you are well. My mom has recently been sick and the doctors did some tests and have found an abnormality in her urine tests that may be the first signs of Adrenal Cancer, I'm glad to hear you have beaten it twice and I pray you conquer it once and for all. Nothing has yet b |