MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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boot2aboot's picture
Replies 6
Last reply 7/7/2011 - 6:29pm

To all the stage 4 vets out there i need your help...i reposted this on suggestion of Linda...

I was initially diagnosed in April after finding a golf ball size tumor in my right armpit-stage 3c...i had surgery, 3 consults and decided on biochemo...before i could begin treatment i grew another mel in the same place...got it cut out and local radiation for 1 week then rescanned...to find 5 questionable spots in lungs and one definite mel in liver...so you see i have very aggressive mel...i am still on learning curve.

My onc suggested i start chemo on tuesday and biochemo was out of the question and IL2 put on hold until after the chemo...she said she was also considering me for a plexxon trial depending on braf results (which we are waiting on)...she wants to do 6 rounds of chemo (5 day week 6 week) and rescan and do another couple rounds  before starting me on Immunotherapy(i think i heard this right)...i am especially looking for input from Charlie, Jimmy B, MichaelFL, King...but anyone with aggressive mel and liver mel i would like to hear from...i know i can't sit on the fence long if at all, but i want to do the best thing for me and i just don't know enough....i take a lot of nutritional suppliments but do not want to compromise liver...

boots

don't back up, don't back down

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shellebrownies's picture
Replies 8
Last reply 7/6/2011 - 5:02pm

Don is 2 weeks into his second 3 week cycle. His improvement since beginning the chemo has been remarkable--one might even call it miraculous.

The palpable tumor(s) under his right arm has gone from softball sized before the chemo to 2 marbles after 1st round and last Thursday he was down to one that was the size of a chickpea. His LDH number has come down from 2375 day of 1st chemo to 539 after 1st round and down to 388 on Thursday. His pain medicine regimen has been dropped from 10mg/3xday methadone to 7.5/3xday to 5/3xday to 5/2xday. And still, with all these changes, he has not had to use any breakthrough pain meds. 

He had a 4 day period at the beginning of this 2nd round where he had some brutal vomiting, but since getting him the right meds to deal with it, his nausea has completely disappeared. He has much more energy, is eating normally. 

Don goes in on Tuesday for a brain MRI (he hasn't had one in a while) and a CT scan of his torso. We will meet with Dr. Lawrence on Thursday to discuss the results and our plan of action from there.

I have found myself at a bit of a loss. I have had kind of a difficult time switching gears from what we were facing to where we are now, and while it is almost impossible to not be hopeful in light of these changes, I do still worry about the durability of his response and just how much melanoma has really been beaten back by this treatment.

I am hopeful that the scans will prove the huge response his other actions and tess seem to indicate, but, of course, I am experiencing some serious scanxiety. Everything seems so up in the air right now...I can't wait for some kind of answers, you know?

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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DeniseK's picture
Replies 5
Last reply 7/5/2011 - 9:44am

Hi All,

If your on facebook please go to  this link and like this page!  This absolutely breaks my heart!  There are alot of people on here that could offer some good advice and positive outcomes for this little girl and her family!!

Serenas fight   http://www.facebook.com/pages/Serenas-Fight/178408288887479?sk=info#!/pages/Serenas-Fight/178408288887479 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/8/2011 - 2:18pm

Hi All,

Does anyone know that if your interested in a clinical trial that is far away from you do they help pay for expenses?

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 0

Hi All,

Does anyone know that if your interested in a clinical trial that is far away from you do they help pay for expenses?

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Lisa13's picture
Replies 8
Last reply 7/7/2011 - 1:11pm

Next Friday, I have my second session with dacarbazine and then a CT scan 10 days later. I know this form of chemo has had little benefit, but I can only hope that my low tumour burden responds to it. I'm remaining hopeful, but in the back of my mind, I have to be prepared for a Plan B. That being said, my onc. suggested ipi if the dacarbazine works, but I want to know if anyone believes IL-2 is a better option or should I leave that as Plan C?

Here's hoping I won't have to venture into Plan B.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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MariaH's picture
Replies 2
Last reply 7/2/2011 - 2:41pm

Does anybody have any experience/suggestions for a good surgeon in the New York, Pennsylvania, area?  We want Dave to get a second opinion on his enlarged lymph nodes (they are large and matted) - the surgeon at Roswell won't consider removing them.  We just want to make sure that this is the right call - and for those of you who have done second opinions, how do we go about doing it and what medical records do we need?  There are so many options out there today as opposed to when he was diagnosed in 2008 - and for that, I am very thankful!!

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LynnLuc's picture
Replies 12
Last reply 7/4/2011 - 12:06pm
Replies by: kylez, nickmac56, LynnLuc, Anonymous, MariaH, nicoli

I saw this and thought to share it! Its for the B raf folks! It uses Anti PD 1 and ipi!   http://clinicaltrials.gov/show/NCT01245556

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/3/2011 - 3:03pm
Replies by: cfw9186, LynnLuc

Check out the discussion on MIF (www.melanomaforum.org)  anti PDI is more effective and has less side affects.  It is definitely going to be an exciting treatment.

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DeniseK's picture
Replies 5
Last reply 7/3/2011 - 1:08am

Hi All,

I just went to my surgeons yesterday for a check up and discussion.  He went to a tumor board on Monday and discussed my case with others.  They all agreed that my next step should be a Brain MRI and PET scan.  I'm extremely high risk of reoccurence and because of the size of tumor 14mm Breslow depth and clarks level V the cancer could have spread to other areas via the blood vessels.  He said with a tumor this size it doesn't necessarily take the lymphatic channel.  He's also referring me to the Northern California Melanoma Center in San Francisco for a consultation on what kind of treatments I should have.  This will also depend on the MRI and PET scan.  So another week of waiting!!  How long does it take to get the results of these procedures? 

OH YEAH!  I asked for xanax and I got some.  I don't really notice the effects and today was the first day taking one.  If my headaches stop then they were definately due to stress. 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NYKaren's picture
Replies 6
Last reply 7/4/2011 - 10:11pm

I've been having rather a rough time of it.   After developing diarhhea fairly early on (1 week after first infusion), Dr. Wolchuk put me on Entocort EC.  I had a gastric bypass roughly 4 years ago, and I think that made me susseptible to gastric side-effects.  He hadn't seen anyone present with diarhhea so early (shortly after 1st infusion).  After being on the bland diet and 8 days ago having a colonoscopy that did not indicate colitis, Dr. W. took me off the Entocort.  After the colonoscopy, I just kept going and going.  The prep was the harshest I've ever taken, and I was still going for days after.  I controlled it with Immodium**, then got constipated.  Of course, I should have called Dr. W., then, but did not.  I still thought I could manage on my own.

My bypass dr. was very concerned, so on Thurs. night (after my resuming the runs and having pain) he met me at the ER, and performed an exploratory laproscopy for suspected hernias, which was negative (but still necessitated an overnight in the hospital in addition to the surgery.)    I have an upper endoscopy scheduled for Thursday at 6:00 PM (my 3rd Ipi infusion is scheduled for that day as well.)

Today I spoke w/Dr. Wolchuk and he put me back on the Entocort.  We had a very frank discussion...he told me that if the diahhrea is not controlled after 2 days on the Entocort, they  might have to go to Prednisone, and if that doesn't work, to go off the Ipi.  Needless to say, that freaked me out.  the ** next to the Immodium is because he told me that Immodium is NOT the treatment indicated for Ipi diarhhea.  The steriod is.  He told me that they want to hear from me whenever ANY possible side-effect occurs.  They want to hear from me 3 times a day, every day, if necessary.

Dr. Wolchok was one of the pioneers of Ipi, and he has a "perfect track record of managing his patients' side-effects."  Meaning, he hasn't lost anyone yet, and he doesn't want me (or anyone else) to break that record.  Of course, that means stopping the Ipi if  he feels it's necessary.  

So far today, the Entocort seems to be working, so I'm praying it doesn't progress to needing Pred.  The good thing about Entocort is that it  works only on the gut and not systemically.  If I have to go on the Pred, then my whole immune system will be affected, and the Ipi works by BOOSTING  the immune system, so it makes sense that it would compromise the effects of the Ipi.  He did tell me that  he will continue the treatments if I have to remain on Entocort and it's working, so that was comforting.  As much as I like him is how much I just don't feel connected to one of his fellows, who always says "well, we'll have to see if you'll be able to continue the treatments..."   

Sorry if this is rambling, but I've been want to post for over a week--just been too scared & depressed.  So far, only other side-effect has been mild rash/itching. This isn't easy--I'm working full time.  I only took one day off after the surgery because I've taken so much time off already for the melanoma surgery/radiation/ipi.   So, I'm very much looking forward to this 3 day weekend of doing nothing but lounging around and reading.  A Sunday night movie, which my daughter just suggested, would be a high-point.

Hope everyone has a good weekend.

Karen

Don't Stop Believing

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boot2aboot's picture
Replies 11
Last reply 7/3/2011 - 11:35pm

Hi,

i just finished my localized treatment protocol to my axilla lymph gland area...i had two reoccurances since april 2011when i was diagnosed as stage 3c...i had a ct yesterday and had planned on doing my adjuvent therapy right away and now i am sitting here waiting on pet scan to confirm lung /liver...what i need from this community is ideas for my next treatment options...do you think i am nuts to consider dr wolchuk's phase one trial with ipi combos at sloan?  i know the mel i have is super aggressive...i haven't even begun any bio yet as the tumors keep popping up and the surgeons keep whacking...the onc is meeting with me later today to go over results and treatment options...i am good with treatment option for stage 3c if i am lucky today...but, stage 4 opens up a new pandora box and i will need help navigating...maybe micheal fl, charlie or valin could respond?

boots

don't back up, don't back down

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ValinMtl's picture
Replies 12
Last reply 7/13/2011 - 6:08pm

I'm so excited that I'm jumping in the air (well as best I can with my bad leg).  NIH has accepted me for a clinical trial, I went down last week.  I passed their interview and now I will be going down for surgery next Thursday to remove that nasty left lymph node in left groin.  They will use the lymphocytes to grow more in the lab.  After healing and in a few weeks, I will have chemo and most likely full body irradiation to destroy immune system then they will add lymphocytes and IL-2.  Should over about a 3-week period.  I know it's tough and I am sure nervous but having failed ipi and reading Jimmy B. comments and many otehrs, I know it is the best way to go.  I have to get rid of all the sub-qs plus any other surprises that melanoma has waiting.  I am praying that the good Lord will help me slay the dragon.

A million thanks to Warren G. for his support!!!   Val, stage IV xx

Live Laugh Love Nothing is worth more than this day!

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JerryfromFauq's picture
Replies 11
Last reply 7/1/2011 - 10:08pm

On 6 June I  felt a tender lump back  of  my right nipple.  I had a CT and Oncologist visit alred scheduled for June 13th.  (How's that for timing?)  The lump showed on the CT and my Oncologist brought up my problem the next day at a Oncology team meeting .  My Melanooma Surgeon's nurse called me and set up an appointment for June 27th.I saw Dr Slingluff then and he agreed that he would remomve the tumor which in now about 1 inch across, as soon as he could find a open operating room on his schedule.  He had his operatimg schedule full up until the middle of August.  I'm not sure just what he did but his nurse emailed me (and another nurse phoned me) to say that he wou7ld operate on me on 6 July.  This is great because this allows my wife and I to be in Colorado again in mid/late August for the birth of Gramd kid # 15.  Thank You UVA!

   It was noted that If the melanoma has indeed gone from my rear endthru my left groin then thru my neck and to my right breast, that this would indeed be an unusual path for it to follow.  So here's hoping that it's not a cancerous growth in there!

I'm me, not a statistic. Praying to not be one for years yet.

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alicia's picture
Replies 6
Last reply 7/1/2011 - 1:23am

Hi everyone I went to Vandy this past Friday to a derm that specializes in patients with multiple primaries and genetic mutations. I have had 3 primary tumors (1) >2.3mm Clark IV stage 3 SN+ (2) 0.59mm Clark II (3) >2.3mm Clark IV stage 2. All 3 have been amelanotic. This new dr says I fall into a category of the unknown genetic mutations because all mutations are not known at this time and he has never had a patient present with all their mukt primaries amelanotic. He said I make him very nervous and he's concerned because these amelanotic tumors are hard to diagnose. Anyways he did two punch biopsies in my back near my most recent wide excision and he found two swollen lymph nodes in my right groin. I went to my oncologist who said she was concerned about progression of disease and ordered a PET scan which I got the results today from my online acess to my hospital chart. I haven't actually spoke to my dr about these results but from what I've read there was no convincing evidence of metastatic disease or uptake in these nodes. My question is does this mean cut and dry these nodes should be negative or do u think my onc will want a biopsy. She said if they are hot on pET she wanted to do ex idol al biopsy but she never said what to do if it was neg on PEt. Just wondering your thoughts and has anyone had a neg PET and nodes still positive on biopsy?

Thanks live u all

Alicia

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