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October 27, 2012 at 3:24 pm #20717WITomParticipant
First time posting. 51 year-old with wonderful wife and 3 teenage sons. Initially diagnosed in July of 07 -stage 1B, Breslow thickness 1.75 mm, Clark level 4, no ulceration (mole right upper back). Treated with WLE & SNB negative. In April of 11′ I noticed a cyst under my skin at my hairline/back of neck -smaller than a marbel. Physically I felt totally normal – thought I had a stubborn pimple or a cyst. Showed my dermatoligist. Punch biopsy showed metastatic melanoma & subsequent scans showed widespread mets – stage 4. Initial CT showed – multiple liver masses, nodules adjacent to both kidneys, nodule in thyroid, tiny nodules in lung parenchyma, lymph nodes in axilla & messentary, as well as some subcutaneous nodules in the buttocks and left anterior chest.
Treatment started in May 11′ – Clinical trial with 10 mg Ipi – EGOC 1608 arm B (Ipi only with maintenance infusions). I tolerated the initial infusions well with some minor Ipi rash and mild diarrhea. My initial CT scan after starting treatment (8/11) showed “significant interval improvement” in nearly all of my lessions with a few no longer measurable. My next scan showed further reduction in some and stability with most of the lessions. I continued to feel great physically.
I recieved maintenance infusions in 10/11 & 12/11 per trial protocal. A few weeks after my infusion in December I developed colitis. I was hospitilized by late Jan because of dehydration and the worsening colitis. I ended up losing more than 50 lbs from ~ 185 down to 130 lbs. I ended up perforating my bowel in late February and the intial surgerical attempt to remove my colon was unsuccessful. I was told there was nothing else that could be done and I had only a few days left.
Through the intervention of some special friends – 3 days later I was transferred to UW-Hospital and underwent emergency surgery on a Saurday night from 11:30 pm until 5:30 am Sunday where they successfully removed my entire colon and performed an iliostomy. Dr Harm’s and his surgical team saved my life that night. I later needed to have 3 drains placed secondary to infection to remove 3 large abscesses from my gut region. I finally was discharged from my last hospitilization in late March still weighing 130 lbs and extremely weak/malnurished.
My scans however continued to show “stability” of my remaining lessions. I was able to return to work part time in mid May and full time by mid June. I regained most of my weight (now at 170 lbs) and resumed running in the summer. After my July CT scan again showed “stability” my oncologist decided we would do a PET scan next in October to see if the remaining lession were active or not. I recieved the results of the October PET last week and it shows “no sign of recurrent or metabolically active disease”. My oncologist said I am now NED!!
My iliostomy is a minor inconvience and a daily reminder of how blessed I am to be here each day. I try not to take anything for granted anymore. As a physical therapist I often have middle age to older patient’s make comments like ” it sucks to get old “. Of course I never say anything but what I’m thinking is – no it’s a blessing to grow old and I hope to make it to your age! When I run now I have some right knee pain which is early arthritis (shows on my Bone & PET scans). One of my goals (beside graduations, weddings, grandchildren etc) is to live long enough that I have to deal with a total knee replacement – and that will be a blessing.
Sorry for the length – I always copy NED postings and place them by my wife’s side of the bed as they have given us hope. Like so many others I want to thank Catherine and the other frequent posters for the information, inspiration and hope you provide!! Our prayer’s go out to everyone battling this disease and to the families of those no longer with usOctober 28, 2012 at 8:51 am #57219krissy424Participant
I just wandered in from the Stages I &II board and read your story, Tom.
You are a miracle man with an amazing story! You give a new meaning to the words,
“Never, Ever Give Up!’ Thanks for sharing your inspiring journey.
Wishing you weekends filled with grand kids! I have three with two more due in the spring.
They are truly my reason for wanting to stay healthy.
KrisOctober 28, 2012 at 12:04 pm #57220Catherine PooleKeymaster
Thank you for sharing your story and welcome to our forum! That is certainly one heck of a response to IPI. Your story is incredible. Your outlook is commendable too. I agree when folks complain about getting old I often think if they only knew what many of the patients here know about life and how each moment can be precious. I hope we will hear more good news from you!October 28, 2012 at 2:58 pm #57221AnonymousGuest Tom:
What an amazing and inspiring story!! I too really like you’re attitude about aging and you have inspired me. Thank you!!
JeffOctober 28, 2012 at 11:10 pm #57222Shirley ZParticipant
What an incredible story! I hope your NED continues permanently. Your story brings hope to so many people.
I totally agree with your getting old philosphy. I look forward to every birthday. Something all we cancer patients have in common.
Shirley ZOctober 29, 2012 at 3:35 am #57223SMLinkParticipant
What an amazing journey you have been on, Thank you for sharing and giving hope to all of us battling this BEAST !!! It certainly is going to make me call my oncologist tomorrow bc he pulled me from IPI after 2 rounds thinking it wasnt working .
Thank you from the bottom of my heart!!!
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