BioChem Update - Just checking in...

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11/10/2010 10:33pm
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Hi All - I just wanted to check in with the board and say that I've finished my first round of bio-chem.  Brutal!  In fact, I'm pretty scared to go back.  I'm scheduled for 4 rounds with surgery to remove a small tumor in between rounds 2 and 3.  I so much appreciate reading this board, but it also scares me so much.  Losing people at 20, brain mets, etc...I just can't believe this road ahead.  Thanks for all the support, advice and kindness.  - Shari IIIb/c in Nebraska

Hi Shari,

I did 3 rounds of bio-chemo 4 years ago. I agree....it can be brutal! I'm not sure if it was the treatment, surgery (LND of left axilla) or just luck.......but 4 years post treatment I am still NED! I wanted the most aggressive treatment available so I wouldn't be second guessing myself if there was a reoccurrence. I am 52 and have returned to a "normal" life post treatments....haven't missed a day of work to illness...ran 5 marathons etc.

So....hang in there as best as you can. Please don't hesitate to email me if you have questions....or just want to vent.

All my best to you!

Kevin

PS

Let the nursing staff take good care of you and keep you medicated!!! The meds were a big reason I was able to get through it!!

Hi Kevin - Thanks for your post.  I realized after I wrote it that I needed to hear from people that had gone through it and had some time post chemo without the disease.  I don't know if its a "cure"...but, I sure would love some disease-free time ahead of me.  I'm sometimes worried that the bio-chem won't have an effect and I'm doing it for nothing. 

I appreciated reading your postings of the three rounds, also.  It helps.  I don't know why they don't "knock me out" more....I will work on that! 

Can't type too well as I have lost most feeling in my finger tips - they tell me it might not come back.  We'll see.  Ok...on to Week 3 (recovery week)!  Looking forward to getting things done!  - Shari

Hi Shari,

Hang in there. We live in Hastings. We did go out to Univ Of Colo and saw Dr Karl Lewis. Jerry was not offered biochemo. We weren't satisfied with our visit out there. We really weren't happy with the watch and wait that Dr Lewis suggested. I know Dr Gonzalez was his mentor so I am not sure the difference in the two of them.

I wish you the best, and I hope this keeps you NED forever for you and your child. I am pretty sure you have a son. We have 2 girls and a boy, ages 11, 7, 3.

Jerry continues treatment in Omaha.

Take care,

Susan wife of Jerry Stage III

Hi Susan  - Nice to meet you.  Its always good to meet a fellow Nebraskan. I haven't met Dr. Lewis at all...I will say I could have gone on forever looking for just the right Dr.  but, I eventually figured out I needed to settle on one and trust them.  So, that is what I've done with Dr. G.  What type of treatment is Jeffy getting in O? - Shari

Hi Shari. On our way back from Colorado in March, Jerry had a flare up in his thigh, had MRIs and reports say that it appeared to be a tumor. We signed up for a clinical trian, paclitaxel. carboplatin and Everolimus. Jerry is done with the Iv chemo and just continues to take the study drug everolimus. During chemo his foot flared up with osteomylitus, bone infection, all the after effects of an isolated limb perfusion. He had his foot amputated early October. He sees docs at UNMC - Dr Silva, surgeon oncologist, Dr McGarry orthopeodic surgeon, Dr ARe, pain doc and then for the clinical trial he sees Dr Hauke with Nebraska Cancer Specialists at Methodist.

I hope you are doing well with the chemo. Hang in there, Susan wife of Jerry

Hi Shari,

I am very sorry to hear what you are going through. I am not familiar with the bio-chem treatment though. Actually, I am totally new to this board and the Melanoma world in general. I was just diagnosed with melanoma about two weeks ago and stumbled upon this site while looking for a support group. I never actually found one though, so I am trying to cope by sharing the experience with the brave people on this website.

I agree...the posts of the last couple of days have been quite terrifying. But I must say...the bravery and tenacity of the warriors in this fight are absolutely awe inspiring. I feel it is helping me to prepare for the fight of my life. For me though...I don't even know my stage yet. I have an Acral Lentiginous Melanoma on my heel with a Breslow's depth of 3.7mm, no mitosis, no ulceration, and no evidence of regression or lymphovascular invasion. I don't even know if it is biologically possible to have metastisis with my tumor stats, but I assume it is because they told me anyone with a tumor having a Breslow's depth over 1 mm must be checked for lymph node involvement. I am scheduled for a SNB and WLE (with skin graft) on Friday, November 19th.

What I really find beyond terrifying is that some people seem to report having been given a SNB that came out clear, then a couple of years later are diagnosed with metastatic melanoma. WTF...how is that even possible? Is the SNB not 100% effective at identifying metastatis? How long a period of time does it take to no longer worry about the chance of recurrence? Or are we at higher risk for the rest of our lives? My dermatologist told me that having had melanoma I am only 20% more likely to develop another lesion. I guess that is assuming it is a new primary site.

Mark in California

Hi Mark - Thanks for sharing.  Good luck with your test tomorrow.  I don't know, at all, what is possible with the SNB...but, mostly what I've been told is that this cancer is RANDOM.  So random that some people get mel again after having stage I removed with clean margins.  Or that Stage III doesn't come back.  There's no telling where or when it might come back and so the challenge for me...is to figure out how to live my life with that possibility.  I could have months or years...no real way of knowing...

Its also hard to go through the toxic Bio-Chem without knowing if it will have any effect...but, I feel like I have to do everything I possibly can.  I hope your pathology report brings good news!  - Shari

Hi Shari

Good Luck with the bio chem.  That may be my next option if i don't qualify for ipi.  I also go to Dr Gonzalez at Univeresity Hosp.  My surgeon has been Dr Gajdos.  Love both Drs.  I totally trust their advise for me.  I am 48 with stage IV diagnosed last May.   It is a very scary.  You just have to trust that your dr has your best interest in mind.  good luck again and keep me posted on your treatment.  Do you go to floor 11 to receive the bio chem.  I have been on 9th floor and the rooms are great.  I hope it is the same up there.  ICU sucks and 4th floor is not as nice as 9th. 

melanoma is a word...not a sentence

HI - My husband and I just gotback from UCCC where we met with Dr Lewis for treatment plan for Stage 3 Mel, where we were given a few options, the one to work the best in our case is BIO CHEMO, but as everyone has stated is brutal.  Can anyone give my husband some insight to the treatment, we have not set a date to start but will be within the next 2 weeks. Dr's have described the hospital stay as the worst, but the 2 weeks at home recovering with flu like symptoms.  how accurate is this and can anyone elborate on this for us. my husband is 44 with stage 3.. his Mel was removed from his lymph node a week ago and came back with Mel, PET scans were clean otherwise, thank you,

I'm one of Dr. Lewis' "oldest" patients and did biochemo in 2003 after a Stage IIIc diagnosis (14 maligant nodes).  Today, I'm healthy and NED-- in fact I have a checkup today with Dr. Lewis and I'm sure he'll once again tell me I'm a boring patient.

I've written a lot about the biochemo experience in my blog, www.hotelmelanoma.blogspot.com, mostly in the initial post in March, 2010.  Yes, it's brutal but very doable for an otherwise healthy 44-year old; I was 50 at the time.  I was heavily sedated through most of the hospital stays, the time passed quickly, and I was mostly unaware of the shape I was in.  The hospital times were harder on my wife who had to watch.  Biochemo is ugly, and my wife and I quickly made the decision not to allow visitors, even family members.  Once I was out of the hospital, it took 7-10 days for the flu-like symptoms to pass, but I found myself feeling better day by day.  And I always seemed to enjoy several days of feeling pretty normal, although tiring easily, and enjoying normal activities (like eating and exercising!) before checking in for the next round.  The most annoying side effect of biochemo was the "brain fog" I experienced during and after treatment, but I'm told the large majority of biochemo patients quickly get over it after completing treatment.

If I had it do over again, knowing what I know now, I'd absolutely go for biochemo.  Best wishes to you both.  If I can help you in any way, please let me know!

Rich