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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emilypen's picture
Replies 5
Last reply 8/25/2011 - 4:41pm

Hi All,

My hubby is currently doing IPI in a clinical trial in Toronto. He had his 3rd infusion yesterday.

My question to anyone who responded to IPI in the past. When did you lumps/bumps start dissapearing or rather when did new ones stop popping up?

It seems that every day there is a new subcutaneous bump popping up. Some of his older bumps are inflamed and painful to the touch and some have bruises over them.

We heard that his lympocyte level was raised on his last blood work and the docs said that is a good sign, but it's hard to remain positive when he feels something new every day.

Last night he was up til 4am just worrying.

 

And for those that did not respond to IPI, what next? We've done MEK/P13k, BRAF , Dacarbazine and now IPI.

Any input is greatly appreaciated.

 

thanks,

em

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TracyLee's picture
Replies 9
Last reply 8/25/2011 - 9:28am

Hi y'all,

Well, I am definitely a BRAF responder, and we all strongly suspect a delayed ipi/Yervoy responder!

Nasty/ugly but tolerable rash from below my neck, down my entire body. Began last week, so virulent that my local onc in conjunction with U of Penn, took me off of BRAF for a day or so.

Then, last night...blurry vision in my right eye. This seems more of a ipi side effect than BRAF. Called local onc, and U of Penn. Hauled to ER, assessed, seen by eye doctor today. It is slowly resolving.

My eyesight is terrible anyway (I'm an 11 diopter correction!), so I don't mess around with my eyesight.

The eye doctor did NOT feel it was a side effect. Personally, I do, particularly in conjunction with the rash.

Thoughts? Anyone else have sudden blurry vision, which resolved fairly quickly?

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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JerryfromFauq's picture
Replies 3
Last reply 8/25/2011 - 9:26am
Replies by: Terra, nickmac56, MariaH
I'm me, not a statistic. Praying to not be one for years yet.

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Lisa13's picture
Replies 5
Last reply 8/25/2011 - 9:20am

As of this Friday, it will be 3 weeks since my first ipi treatment.  Today I have noticed a rash across my upper chest as well as on my face (across cheek bones). My face is very warm and looks a bit sunburnt. My stomach has also been gurgling, but nothing other than that.  Hopefully this is all a good sign. Blood work and next ipi treatment next week.

Lisa - Stage 4 - lung mets

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

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lyndaloo's picture
Replies 8
Last reply 8/25/2011 - 2:01am

My husband was tested for BRAF and is negative.  Currently his brain mets are stable (after radiation and surgery) and his lung mets are not there anymore (after surgery).  He does have a few small spots that we know about but nothing in his vital organs. Watching and waiting is an option our doctor has given him or chemo (decarbazine), if chemo fails then he can get ipi. I am wondering how many rounds of chemo must be tried in order to be eligible for ipi (yervoy).  I am fearful they may pull the ipi study soon.  Any insight would be helpful at this point, 

Loving wife,

lyndaloo

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For My Sister's picture
Replies 9
Last reply 8/25/2011 - 1:29am

My sister, known as Mayeast on this forum,  but who was Cheryl Walters Zweeres, passed away last Tuesday, August l6, 2011 at her home.  She was 62 and was diagnosed exactly one year ago in New Brunswick, N. J. with nodular ulcerated Melanoma.  She tried interferon for one month until it affected her liver and  also trial E7080 in March until May until it spread more to her liver.  Then weekly chemo treatments until she developed blood clots and then was found to have further spread in her pancreas, spleen & bones.  My big sister was my hero and I know she would want all of you still strugglling to keep fighting.  God bless us all.

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i have known a few cases of rudeness and ill treatment on the BB.  This is not the norm.  This group of people is the most undertnding and compassionate group that I have ever met.   We made it to Colorado tuesday with only one day of tire trouble and then  Laura Downs, whose husband died from melanoma in May 2010 came over to visit us.  She is a wonderful compassionate young lady with a delightful 2 year old daughter that is studyig to be an Oncological Nurse to help in the fight against what melanoma is doing to so many of our group.  She was much appreciated by my wife last year when I was in the Denver and Springs hospitals.  She was very helpful and gracious in spite of having just lost her husband and the father that loved his baby girl so much.

   We received so many great messages and help from you people.  They were read to me, even though I was unconcious then. (Acutally I have just been findiing more of the messages from then.)  Tanya did a great job of saving everything for me as well as keeping y'all informed of my status.  And people from Colorado visited me in the hospitals out here.  I had never met these people in person before, just thru the MPIP BB and chat..    As I discussed with Laura, It is amazing the closeness that we can develop with each other going through this struggle.  And most amaziing is the wonderful people that we encounter on this journal.

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

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JennerFromIowa's picture
Replies 11
Last reply 8/24/2011 - 7:35pm

Hi,

 

Haven't been on here for quite awhile.  I get on once in awhile to see how people are doing but am mostly just trying to "live life".  Next month will be my 9 year anniversary with good old NED.  (I had a 1.53 mm, ulcerated melanoma, mitotic index of at least 17 mitoses per square mm., lymphocytic host response of +2 on left hip)  I just had my onc appointment in June and he says he doesn't need to see me anymore....that it is highly unlikely that it will come back after this long.  As much as I believe that is probably true, I don't want to risk anything either.  I have been followed with chest xrays and lab work once a year with a different onc that doesn't come to my area anymore so switched oncs.  Not sure that was a great idea but this guy was supposed to have more experience with melanoma than the one before.  I do still see the dermatologist once a year too.  What kind of follow up are other Stage IIA people out there receiving?

 

Thanks so much for all you guys do!

 

JennerFromIowa

Stage IIA 

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fowlera1's picture
Replies 16
Last reply 8/24/2011 - 5:17pm

Hello, My name is Andrea, I am 39 years old and was just diagnosed with stage 4 melanoma.  I have two nodes in my lungs, one that is 3 cm and one that is 2.3 cm.  After meeting with the medical oncologist today, I have a decision I need to make:  IL-2 or Yervoy.  I was wondering if anyone has been treated by these and could give me any input.  I really appreciate any feedback b/c I am totally sitting on the wall b/w the two.  Thank you in advance for any help you can provide.

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I didn't see mention of this on the board, and the information was only recently added to clinicaltrials.gov, so I thought I would put this out there for anyone who might be interested...

Roche is teaming up with Bristol-Myers Squibb in testing Yervoy AND Zelboraf to see if they are safe to be taken in conjunction with each other as well as to test if effectiveness and response time will improve when used as a combination.

I thought this a highly interesting trial and wished we had had the time to wait for this one to open for Don to get on it, but we were told that even though the trial is slated to open in September, it would probably be November before testing sites would be ready to begin recruiting.

The first three testing sites are going to be located in Boston, Los Angeles, and New York. I know that MGH will be one of the sites in Boston running this test.

Here is the link for anyone interested in reading more about it: http://clinicaltrials.gov/ct2/show/NCT01400451?term=melanoma+boston&recr...

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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awg's picture
Replies 6
Last reply 8/24/2011 - 10:09am

On Aug 12, 2011 I completed the last infusion of the 20 day cycle of High Dose Interferon. I feel that I was rather lucky as I only had side effects after the first Infusion and tolerated the Infusions fairly well. I am now on the 3 shots per week and experiencing little to no side effects from the Injections. I am grateful to have made the turn from infusion to injection.

Even though I did well on the infusions the difference that I feel now from being on the lower dose injections is remarkable.

Hang in there if you are on the High Dose Infusions, it gets better.

 

Allen

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shellebrownies's picture
Replies 7
Last reply 8/24/2011 - 12:31am

Well, Don went in this week for a CT scan and brain MRI after having his 4th chemo treatment. I had been concerned since after the 3rd round when his LDH numbers started creeping up instead of coming down. Unsurprisingly, the scans showed some regrowth. (They also found a small blood clot in his lung, so now we add blood thinners to the ever-expanding list of medications he takes...)

Our plan B was the Compassionate Use Zelboraf trial. So we go in yesterday for his EKG and derm appointment for the trial. While we were there, Dr. Lawrence comes in to see us. He said that they got the test results back from the tissue sample...and that Roche is saying that Don is NOT BRAF positive!

This was the SAME sample that was used in May when we were trying to get in to the GSK BRAF/MEK trial...the same one that came up BRAF positive on their test!

Now this gets complicated. The doctor said they are appealing to Roche to try and get Don accepted to the trial based on the other BRAF test. However, now that the drug has been FDA approved and the FDA requires that the drug can only be prescribed after a positive result with a FDA approved test (as in only Roche's test), I'm not sure if that's going to happen.

There has been talk about perhaps taking another tissue sample if their appeal is denied. But, what happens if that comes back negative?

Sigh. Wish I knew. We meet with Dr. Lawrence on Monday; maybe we'll have better news then.

 

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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Ashykay's picture
Replies 5
Last reply 8/23/2011 - 11:28pm

Hi everyone,

Just thought I'd provide an update on my Mum. As some of you may know, the oncologist last Thursday basically waved Mum out the door and said good luck, no more treatments for you (apart from Gleevac - for which Mum has not tested positive to the c-kit mutation, only c-kit staining, i.e. highly unlikely to work!). During this appointment, Dad and I took in all of the research we had found and started throwing them at him to see what he said about each trial/treatment we had mentioned. As part of this, we brought up Yervoy. He was incredbily negative about it and said it had shocking side effects and didn't target rare primary spinal melanomas like my Mum's. On our persuasion, he agreed to refer Mum to an immunologist "jsut to be sure", but again talked abotu side effects and that this is basically a useless option.

Was he wrong (I am furious, just on a side note....).....Mum went to the immunologist yesterday, who had some options for Mum. He knew exactly what he was talking about, was spot on with facts, and it had appeared he'd done some research which was very surprising considering that no other doctors had done this before. He hasn't ruled out trying to get it all out via surgery, however he suggested Mum start on a trial they are doing at this hospital in Brisbane, Australia (which is the same hospital as where the oncologist is - NOT happy. Do these people talk to each other? Clear not. Sounds pathetic if you ask me). The trial involves Mum firstly going onto chemotherapy - not as treatment, but rather as eligibility to access Yervoy. The doctors will then put Mum on Yervoy, and at the same time, they will go in and take a large (being 2cm of the 5 x 4cm tumour) section of the tumour on her spine and formulate a vaccine based on the exact genetic makeup of her tumour. My understanding is that the Yervoy has the effect of removing the protective "shield" on the tumour which prevents it being killed by the body's immune system, and while the shield is off, the vaccine has the effect of going in and killing the tumour.

There are obviously risks with this approach - side effects of treatment itself as well as the surgery which is always going to eb risky due to the position on the sacrum. The immunologist told Mum that her chances of significant side effects would be 1 in 100, and I believe she is prepared to take this risk.

I'm not sure whether anyone has been through this treatment/trial before? I know quite a lot of you have been on/are on Yervoy? Would appreciate feedback :)

Feeling very relieved that someone is listening to us now and willing to trial something. I am trying not to get my hopes up despite being so happy and excited about this, as it seems we always get disappointed everytime we get our hopes up. Dad adn I will continue our quest to follow up doctors in Sydney, especially with respect to schwannomas - which they don't believe it is but we want to be sure.

Will keep you updated! Ashley

 

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Charlie S's picture
Replies 33
Last reply 8/23/2011 - 11:19pm

Nothing ceases to amaze me.  I've had more scans than many have had birthdays during all my seemingly perpetual skank prom dates with melanoma over my years. 

More often than not, my doc has had to drag me in for scans (usually after calling my mother !) because I  more often than not  would always blow them off. under the guise that I was busy living..  Scans were, and always have been a nuisance to me for many reasons.

I have this game of chance that I play with my doc prior to scans:  I always write down what I expect the results to be, put it in an envelope, lick it shut and when he tells me the results, I whip out my envelope to "score" how I did. .  Probably in most medical circles, that type of behavior would be considered as the ultimate smartass; but my doc is a nice guy and knows me well, so he puts up with me..

Tonight, after again blowing off scans for some time, I sat here and  stuffed my envelope in advance of my ct, pet and brain MRI tomorrow.

NEVER have I had scaniety, but  this time is different after stuffing my envelope.  I'm not looking for sympathy, good wishes or any of that., but know that there are times when we all doubt ourselves and when that happens is the time to step into your strength.

See, I'm not so tough after all !

Cheers,

Charlie S

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NicoleinVA's picture
Replies 4
Last reply 8/23/2011 - 10:01pm

Hello,

I recently had a WLE on lower left calf and SLNB.  The plan pre-surgery was to do a skin graft on calf.  At my pre-op consult with plastic surgeon he said there was a possibility he could close w/o skin graft.  I told him I was all for that as I know skin graft can cause problems.

I had surgery on 8/11 and they were able to close w/o graph.  I have a long incision on my leg (inch above ankle to two inches below knee) and it is very, very tight.  I'm sure part of this is due ot the fact I had a conservative excision done in this same are in May and they came back after melanoma diagnosis for more tissue.  Area around incision is very red and surg onc started me on keflex Friday due to redness, however incision is clean, no weeping, etc.

My question is this.....has anyone experienced this type of tightness and does it loosen up over time?  I can't put my full weight on foot yet due to tightness and it concerns me to some extent thought I know it is early.  Also, it's fairly numb but I'm assuming this is normal due to scar tissue/nerves and the fact that surgery was very recent.

Many thanks for your input.

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