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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arthurjedi007's picture
Replies 8
Last reply 4/25/2014 - 12:45pm

Just wondering when the Tafinlar/Mekinist side affects are going to start? I'm like day 6 and nothing which is good. But when I was on Zelboraf I already had fevers, rash from head to neck, etc.

Oh and yeah I'm still walking :) It's difficult now with the tumor pressing on the spinal cord but at least I got to a different local hospital. Same place that did radiation last summer in that spot. The radiation oncologist is trying his best to keep me from being paralyzed. I'm quite happy with him. We'll probably start his radiation plan Friday. Either that or I give this med a chance to work. I dunno for sure yet. But at least I'm still walking. hehe. Had to cancel my trips to MSK and Sarah Cannon but I'll get there eventually. Just gotta get this spot stabalized.

 

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Anonymous's picture
Replies 2
Last reply 3/18/2014 - 5:59pm
Replies by: Anonymous, G-Samsa

After anti-PD1 is approved is there anything in clinical trials that look promising? Anything big that is new or are the clinical trials looking at using the drugs in combination with each other?

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eod0514's picture
Replies 4
Last reply 3/6/2014 - 1:05am

Hi

My son Shane is 34 years old and is Stage IV for the last few  years. Recent treatments include Ipi, BRAF inhibotor *(Zelboraf for 13 months) The Zelboraf stopped working in january 2014. He just started the BRAF/MEK combo (Dabrafenib/trametenib) on Feb 8th 2014. His sub-cutaneious tumors appear to be getting larger and the number of them seems to be increasing. 

It has only been 2 weeks but we feel that this treatment is not working for Shane. Does anyone know of any other treatments out there or access to open trials for any of them including PD1, PDL. or any other viable options such as bio-chemos or IL2?

We are trying to determine the best approach at this time so that we can follow the best course going forward. Are there any indicators or markers at this stage that would help get us in the right direction at this late stage?

 

Regards,

 

Eileen O'Donoghue

 

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Anonymous's picture
Replies 3
Last reply 2/25/2014 - 2:45pm

Hi,

Has anyone experiened rigors while they were on Yervoy? If so, did they disappear over time or did you do or take anything to stop them?

Thanks!

 

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Maereard's picture
Replies 4
Last reply 2/25/2014 - 12:41pm
Replies by: Maereard, Janner, BrianP

I always come back here when I'm scared. I was diagnosed with melanoma over a year ago. It was very small. They did wide incision and I was told thete was no need to biopsy the lymph nodes. I was very lucky and all margins came back clear from the incision. I had my regular skin check 2 weeks ago and all clear again:-).....until this past weekend. I found a lump under my arm in the shower. It was about the size of a pea. I sqeezed it:-/...I was hoping it was just a pimple from shaving. Its a few days later and now it is red a very very painful:-( I scheduled an appt with the dermatologist in the morning to have it looked at. Of course now I'm terrified. I am really just posting this to get my fear out.

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LBIO's picture
Replies 1
Last reply 2/24/2014 - 9:56pm
Replies by: BrianP

Hi, I'm Lisa and I work for Lion Biotechnologies (www.lbio.com) and am looking for patients who have participated in clinical trials using TIL treatment to share their testimonials. If you have and would be interested in sharing your story, you can email us at info@lionbio.com

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Michelem's picture
Replies 7
Last reply 2/26/2014 - 11:16am

Husband woke up this am with severe abdominal swelling. Onc says this is caused by the cancer spreading too fast for the ipi to fight. He's thinking of switching us from ipi to Temodar. Says there is no literature on using them together.

We were in ER over the weekend, they did not properly read the labs and did a total misdiagnosis of dehydration.

Things are looking very grim. Thoughts from anyone here? mm

MicheleM

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Ali's picture
Replies 5
Last reply 2/24/2014 - 9:08pm
Replies by: BrianP, Ali, WITom, Swanee

I haven't posted in a while.  Last month was 2 years since I progressed to stage IV.  I am happy to report that I have much less cancer than I did 2 years ago.  And I feel great!  I have celebrated many victories and made it through a few defeats.  My history is getting harder to tell the longer I live, but hey, hard to complain about that!

Here is a quick rundown and then I want to ask a question.

Jan 2012 cancer in liver, bones, numerous other places

Feb 2012 radiation to femur and ischium

Feb-May high dose IL-2.  Did all 6 weeks of the stuff, after each admission I could feel my subqs shrinking and disappearing.  Unfortunately I could also feel new ones popping up

May scans show numerous tumors everywhere (50-100) and 25 small brain mets

June Temodar started.  Yervoy started.  One dose of Yervoy, colitis developed in 5 days, prednisone started working within days.  I could feel my tumors shrinking like crazy.  We almost started my 2nd dose, but decided because of my reaction to do a colonoscopy first, which looked good to the doctor, but the biopsy came back showing some inflammation/erosion.  So we did not do the second dose. 

Sept scans show all brain tumors gone and only 4 tumors remaining

Nov scans show one tumor near adrenal gland growing.  I search for PD-1 trials (don't get in because of the colitis) and stop taking Temodar.

Jan 2013 radiation to tumors in adrenal/kidney area

Spring 2013 (not sure now when the dates were).  Two tumors left over from IPI still showing growth, adrenal area and axilla.  I start pain pills for my adrenal tumors, can't walk up the stairs or take deep breaths without pain.  CREEPY.  My amazing Dr. in Utah knew of one of Dr. Weber's trials studying PD-1 in patients who had had dose limiting toxicites to IPI.  By some miracle I qualified and started to fly to Florida every two weeks.

Within days of the first PD-1 dose the pain is gone.  Almost not side effects.

12 week scans showed progression of some tumors and shrinkage or disappearing of others.  We decide to continue on with trial.

Sept.  axillary tumor growing like crazy and I can't stand it anymore. I go to Fred Hutch in Seattle to see about their TIL program that was just starting up.  I qualify for that too!  The plan was to to resect that tumor (and grow the TIL cells from it) and continue with the Pd-1.  However, we later learned that if I signed the consent for one trial, I was kicked off the other, so I could not go back to Florida.  I didn't feel too bad because that tumor was growing like crazy on the pd-1 (it was the size of my fist). 

Nov scans show growth of the adrenal tumors, they are now invading the kidney pole which made them necessary to treat.  So the big question was do we do the TIL now (they were able to grow enough cells).  Or do we try IPI again first (reinduction).  I gotta say, my response to IPI was so incredible, I really really wanted to give that a try again. 

Dec first dose of IPI a breeze.  I waited for the diarrhea and it never came.  2nd dose was a different story.  I got very sick to my stomach and an endoscopy showed trouble.  The diarrhea started before we got those results, and the prednisone was started.  After a few days it didn't seem to be making any difference and I had been in the ER from dehydration and I was sicker than I think I'd ever been (also running a fever which had everyone worried).  We had to move to Remicade (while waiting for that to kick in TPN and a week in the hospital).  This has me really worried.  Do we know people on the board who have continued to respond to IPI even after being given Remicade? 

We did scan just my abdomen mid January and it showed my tumors shrinking (not by much, but not progressing which was huge).  We do a full scan in a couple of weeks.  I would be way more confident if I hadn't have had to take the Remicade.  What is your understanding of how this affects Yervoy's abilities? 

Thank you for all your support.  I am so grateful for this site.  This fight is something awful, we need each other.

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Hi!

I am in a trial, nivolumab/dacarbazin. If I suffer from side effects such as colite can I still be part of the trial or do I have to pause the trial until I am cured from the side effect. Can I be totally neglected to go on with the trial.  if I have another cancer than melanoma in my guts can I still be in the trial. I have blood and slime in my stools and suppose I have to report this to the doctors in the trial. I so want to go on with the trial.  I am hoping for answer. 

Inger

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Ninniditti's picture
Replies 2
Last reply 2/25/2014 - 3:28pm
Replies by: Anonymous, Bubbles

Hi!

I am in a trial, nivolumab/dacarbazin. If I suffer from side effects such as colite can I still be part of the trial or do I have to pause the trial until I am cured from the side effect. Can I be totally neglected to go on with the trial.  if I have another cancer than melanoma in my guts can I still be in the trial. I have blood and slime in my stools and suppose I have to report this to the doctors in the trial. I so want to go on with the trial.  I am hoping for answer. 

Inger

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gaby's picture
Replies 1
Last reply 2/26/2014 - 9:05pm
Replies by: Janet Lee

 

My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest (12)  were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months thank God for all normal except when some nodes increased in size. So the oncologist  decided to make a pet. Yesterday I got the result of my husband's pet. The result is very bad, there are many hot spots in the pelvis iliac chains.  Internal organs are clean. I am very distressed.  As can be? Today the oncologist  will be analyzing the pet with other doctors  and tomorrow we have an appointment with the oncologist. I'm sure the melanoma returned to the nodes of the pelvis, then what are the options? remove? drugs? someone had that experience and then was  NED?

thanks for your words.

Gaby

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msue5's picture
Replies 2
Last reply 2/24/2014 - 9:13pm
Replies by: JerryfromFauq, msue5

Inova Life With Cancer is trying to revive a melanoma group in Fairfax Va. The group will meet Thurs Feb 27at 6:30 till 8pm.  You need to register online or by phone 703-698-2526. It is a 2 minute Dr from I 66 and 495 interchange so convienent to D.C and Va and Md suburbs. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/24/2014 - 5:45pm
Replies by: arthurjedi007

I have an appointment with my oncologist next week but I want to see what people think here. I have had back pain for 7/8 months. At first it was once a week or so when I bent over with a sharp quick pain and has gradually become almost every time I bend over. It does not hurt if I l am lying down or excercising etc. Just when I bend over. Does this sound like spinal mets? I have a hard time believing that this is athritis as I am in my early 30s. I am really confused as to what it could be. 

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Dave from Ormond's picture
Replies 10
Last reply 3/11/2014 - 1:42pm
Replies by: Dave from Ormond, BrianP, Anonymous, kpcollins31

I have had conversations with multiple people who have had the Pituatary Gland swelling as a side effect on Yervoy/Ipi.  I too had the swelling and we resumed dosage after the swelling was brought back down.  Some of you had said that your doctor did not resume dosage because the swelling was an indicator that the Yervoy was working.  

Here's my bad news.  I finished my 4th dose on November 20, 2013.  CT Scan on December 12, 2013 showed zero new growth.  CT Scan on February 12, 2014 showed 11 new growths.  Multiple spots in both lungs, liver, spine, vertebrae, stomach and two bone spots.  

While they are saying that there is still a chance that the Yervoy will stop the growth and may even kill the cancer, we are going to Moffit in Tampa and start another treatment or go BRAF/MEK locally.  Waiting for them to call me to set up the appointment.

Don't want to be the bearer of bad news or the squasher of hope, but I thought it was important that I share my experience.  I truly hope that yours turns out better.

Good luck to all of you.  I've got to get my boxing gloves back on and get ready for the next round!

Dave

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/24/2014 - 9:47pm
Replies by: Swanee

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