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.

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Just thought I would share antibody drug conjugate trial NCT02302339 - Glembatumumab Vedotin is recruiting in several places.

However unless I'm mistaken it seems to be the same med presented at ASCO 2010 with this report:

http://ir.celldex.com/releasedetail.cfm?ReleaseID=715940

That trial had an overall response rate of 15% and median progression free survival of 3.9 months.

So I'm not sure what they are thinking. Maybe something for those who even pd1 failed them. I dunno.

Artie

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/21/2015 - 3:37pm
Replies by: _Paul_, Teochasse

If you have a local recurrence and NED everywhere else and you are in good health would you just keep on trucking on or would you try to get into a clinical trial?

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susan-scalp MM 2014's picture
Replies 18
Last reply 2/21/2015 - 9:26am

Hi to all tonight and prayers for those in the fight and their caregivers, family and friends!

Went to my 6 month check with Melanoma Oncologist Surgeon today. I am Stage 1B scalp Melanoma and was expecting a routine check. My upper abdomen began swelling a few weeks ago and no pain only discomfort from it pushing up on lungs, some short of breath. My Dr looks at my belly and says "What the hell?!!!"  I love him and if it weren't serious I would have laughed out loud. He is concerned that the Melanoma could have spread through the blood system and is ordered a CT scan to find out what is going on. Has anyone had this kind of spread or symptoms? I am oddly at peace with this, just feel like I went through a tornado and now have landed on the warm sand of the beach with all sun protection on of course!

Susan

It is well with my soul!

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killmel's picture
Replies 37
Last reply 2/21/2015 - 6:46am

Hi Everyone.

.

Many MPIPERS have taken IPI over the years with various clinical trials. Now, the FDA has approved this drug, more people will have access to IPI.

I thought it would be nice if we posted our experience with IPI and results on the drug. Some of us are just starting taking this drug like Jill & Eric,

while others are in the middle of treatment, like Valin. Most importantly, are those who courageously finished treatment and have seen results like

Donna fromVermont. If you got mixed results on IPI or no results, it is important to share your experience so other  can anticipate possible realistic

outcomes on IPI.

 

Please share your experience with IPI to give hope & encouragement for those who will be embarking on IPI treatment.

Thank you for feedback.

Douglas

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Sharon in Reno's picture
Replies 17
Last reply 2/21/2015 - 6:36am

Hello Friends,

Im serioulsy considering Ipi over BARF and was looking for Ipi success stories and or anyt thoughts or comments on Ipi. Thanks, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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http://emedicine.medscape.com/article/1372666-overview#aw2aab6b2

This is a fairly long, interesting, detailed article reviewing all the recent developments in targeted cancer treatment with some comments on future directions.  Our malig mel is in the Big Tent with all its cancer sibs where research findings in one type of cancer apply to other types also. The author discusses the mutation processes that occur in a cell becoming cancerous, how the cancer cell creates its survival environment, cell vulnerabilities, the 10 hallmarks of cancer and much more.  It's technical but well within layman speak, I think.  Hope you find this helpful.  A.L.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/20/2015 - 2:56pm

I'm trying to find a good derm in NYC  - looking for recommendations.  I referred my friend to one on the East Side but she doesn't take Aetna insurance anymore.  Any suggestions would be appreciated.  This will be for annual skin checks from someone that is at risk but currently not a melanoma patient - but a faimly history.

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clthomas2131's picture
Replies 6
Last reply 2/20/2015 - 12:31pm

 

Does anyone have any experience on or about the trials for:

 

Avastin and/or Yervoy 

 

Interferon and/or Yervoy?

 

Those were 2 of my options with the 3rd being just yervoy.

 

Just trying to get as much feedback as possible.

 

Thanks!

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odonoghue80's picture
Replies 8
Last reply 2/20/2015 - 10:58am

Hi all, just looking for some insight. I've had stage 4 melanoma for a few years now but over the last 6 months I've had an extremely large tumor in my groin that will not shrink. The tumor is protruding from my right groin/pubic area and it's about the size of a grapefruit. To say the least, I need to figure out how to rid this tumor. From September -December I had 4 rounds chemotherapy (taxol/carbo) that really helped and shrunk or killed many of my other tumors. I also had direct radiation for 10 days to the tumor. However this particular tumor is stubborn and possibly encapsulated itself. Seems that any of the treatments can't penetrate this area. Recently I switched from chemo to Anti-PD1 Keytruda and have had two rounds (3rd this Tuesday) but no response yet.

I've checked with a few surgeons, radiation onc, and a few oncologists so far, and nobody has an idea. Surgery is not an option because of location. Has anybody seen or heard of anyone having any tumors this large? Or are other alternatives to reduce tumors? 

After feeling during some real rough stretches and being on multiple treatments, a brain surgery, clinical trial, chemo, radiation, and now Keytruda, I'm finally feeling a bit better, but this tumor is preventing me from getting back to close to normal. If anybody has any ideas please share.

Thanks,

Shane 

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AshleyS's picture
Replies 5
Last reply 2/20/2015 - 10:01am

After feeling like I was being led down the wrong path for the past 2 months, I finally feel like I'm heading in the right direction. We met with my new care team at MD Anderson yesterday. I will either go on a trial for ipi + IL2 or ipi + PD1.  I'm hoping for the latter. 

Being on a trial with MDA will require me to pack up my 2 year old, 2 month old, and husband for a move from ND to TX, but I know it'll be worth it. 

Thanks to everyone on the board for all the advice, especially for urging me to seek out a specialist. 

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Jacqueh27's picture
Replies 2
Last reply 2/19/2015 - 9:29pm

Jess has been doing so well since we found out that the tumor was shrinking, however it's still big 11cm. She gets a PET next Thursday to see how much of that is actual cancer. She's been having pain again though and I'm worried. Same tumor pain as before. :( could this mean it's growing again or normal after Yervoy?

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csellers23's picture
Replies 10
Last reply 2/19/2015 - 9:11pm

My husband has had one round of keytruda. I noticed what i thought was a bruise on his ankle. Now both ankles are swollen and the bottom of his feet are red it happen fast. It hurt so bad he couldnt walk. I gave him one ibuprofen but cant give him much due to brain mets.has this happen to anyone? If so how long did it last and did they give you any meds to take it away? Also his joints hurt all over. How long did that last for you? Thank you all.

Crystale

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Kdw2012's picture
Replies 15
Last reply 2/19/2015 - 8:53pm

My Doctor just called yesterday and I have 3 brain tumors. This explains the recent very bad headaches.

I am wondering what treatments are done for brain tumors?. I want to go to my appt on Thursday with info.

The doctor prescribed Dexamethasone for  swelling. He said we will have to do radiation also, but this was just over the phone yesterday and we will be discussing more at my appt.

thank you

Kim

 

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Anonymous's picture
Replies 3
Last reply 2/19/2015 - 8:31pm

Hello.  My wife was just diagnosed with a nodule on her lung from the CAT scan (October had a clean PET scan, and surgery for full lymph node dissection in November).  The dcotors are going to do a biopsy of the nodule next week but we are assuming it is melanoma until we hear otherwise (versus an infection, inflammation).  She has spoken to the melanoma oncologist and has agreed to a clinical trial with an Ipi (3mg) and Nivo (1mg) combination for 12 weeks, concurrent doses given every 3 weeks for 4 cycles.  After the 12 weeks she would get Nivo (3mg) every 2 weeks for some time.  She is BRAF negative.

Does anyone have any advice with this?  I know of the multiple and significant symptoms but she seems determined to move forward with this treatment and try to get through the 12 weeks program combo program.  She has discussed medicines to manage the side effects with the doctors.  I have heard that Nivo (or Keytruda) is more manageable in terms of side effects versus Ipi if she is able to get past the 12 weeks concurrent regimen.

Thanks,

Michael1212

 

 

 

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rjwilson2015's picture
Replies 4
Last reply 2/19/2015 - 7:09pm

So my husband noticed in december a pigmentation in his right thumb (not dominant thumb). The doctor seemed not to worry but gave him the choice of biopsy. He agreed. He a huge worrier he would wake up sweating at night wouldnt eat and was always reading on the internet. Well he got his results and it read as follows

nail plate with intercorneal hemorrhage

negative for fungal ornaisms

right thumb bed nail plate,nail matrix and underlining tissue examined with no sognificant histopathological abnormalities.

no melancyttic proliferation identified as multiple deeper levels examined in biopsy

We took this as great news as the final results said all the things above. So his doctor cut above to the left and right of the pigmentation and a longer sliver behind his nail fold.. He went back two weeks later all looked good. He set another appoinment for the stitches a week later that week he did his instructions to clean it. As it dried out it began to what looks like a bruise right in the middle of the matrix  literally right in the middle of the three incisions and he is stressing again that its not a bruise thats its something else and the doctor cut around it because when he did the biopsy he literally saw nothing. So my question are,  hoping i explained it clearly :

1. If it was a mole in the middle would the three biopsy that said no melanocytric found  pick up on it being around it and would it surface that fast (less than a month after surgery). ( no real changes in the bruise or mole )?

2. Could it just be bruising from under the healed matrix surfacing since its dried out.

3. Has anyone else experienced this im trying to ease his thoughts that its just a bruise?

thank you guys for any responses and stories i look forward to hear from you guys!

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