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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Gene_S's picture
Replies 1
Last reply 2/3/2015 - 6:25am
Replies by: Bubbles
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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cbe's picture
Replies 4
Last reply 2/4/2015 - 2:25pm

I want to share my husband's experience because I've seen questions about this and I think I even posted a similar question once. After being diagnosed stage 3C, NRAS positive, he went on ippy (Yervoy) and after just 3 months it metasticized to the liver. At that point he stopped ippy and went on PD-1 (Keytruda). He had many symptoms come and go-- extreme fatigue, nausea, itchy skin, metalic taste, GERD, fevers, night sweats --it was hard to sort out whether these were side effects of the Keytruda, the prednizone that was presribed to deal with the symptoms, or the cancer. After 6 doses of Keytruda, scans showed that the liver lesions had increased. Fortunately, we got him into the TIL program at NIH which meant that he needed to stop Keytruda and all steroids. He went through the surgery at NIH to harvest the lymphocytes from his lymph nodes, but right before starting the second part (chemo) they did scans and lo and behold they showed that his liver lesions had decreased significantly. This was now nearly 2 months after being off Keytruda and a month after scans had showed no change. They sent him home from NIH, since his immune system was fighting the cancer on its own. No one can really provide an explanation, but it seems that maybe Keytruda can have a delayed response, or going off it may have triggered something.

I hope this is helpful to all who are out there waiting and questioning whether its working. Sometimes you have to make hard decisions--we made the decision to stop Keytruda and pursue TIL rather than risk further progression, but it seems it may have been working after all. Also the inflammation seems to have really flared up around the 6th dose right before it started working--that's when he had the scans and felt the worst. We know this fight is far from over but are now very hopeful to finally see shrinkage. 
 

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vince1962's picture
Replies 1
Last reply 2/3/2015 - 9:49am
Replies by: kpcollins31

Well got my scan results and well I knew about the lymph nodes under my right arm cause they are the size of a golf ball but it shows activity in the left pectoral area and also in the right side of my back, left axillary and left subpectoral nodes are also suspicious! 9mm cutaneous nodule mid right back worrisome for malignancy, could represent primary lesion. So my question is I need some input!! what do you guys think?

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Nell's picture
Replies 11
Last reply 2/4/2015 - 2:08pm

Just checking up on you.   How is the swallowing?  Looking for an update.....Blessings.

One voice can make a song; one life can change the world.

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Nan in Nebraska's picture
Replies 2
Last reply 2/2/2015 - 2:38pm
Replies by: Anonymous, Marianne quinn

You'd think I'd be old hat at this, BUT........I just started my 3rd course of Yervoy. The first was in clinical trial, and the last after FDA approval. My second course I developed pretty severe diarrhea after my 3rd infusion and was put on high dose steriods and was able to finish the 4th dose. Given that I had 33 months of stability on Yervoy, and I have metastatic ocular melanoma, which does not usually respond as well as cutaneous does to certain drugs, it was recommended to do the 3rd course of Yervoy. It seems to me that I remember someone saying something about Entocort for diarrhea and that it stopped it quickly. Please let me know what has worked for you.

 

Thanks,

Nan

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Anonymous's picture
Anonymous
Replies 0

I have not heard from him for a long time. I hope he is well.

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Jsneathen21's picture
Replies 9
Last reply 2/3/2015 - 12:09am
Replies by: _Paul_, Jsneathen21, SABKLYN

Do any of you have advice on what I can do for my donor site ?!  It's on my lower stomach i want to scratch it up soooooooo bad:( any remedies you suggest?

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Eileensulliv's picture
Replies 5
Last reply 2/6/2015 - 10:07pm

Just wondering if anyone had yervoy and Nivulmab at the same time? Wondering what to expect, from a patient's perspective. I am to start a trial at Hopkins administering both concurrently... Assuming my brain MRI has no signs of cancer. That will be done Tuesday, and then surgery Thursday to remove the tumor in my back. I have read the consent form for the trial, and know of the possible side effects, but just thought I'd look for a patient's perspective. Thank you!

Eileen 

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vince1962's picture
Replies 2
Last reply 1/31/2015 - 12:14am
Replies by: vince1962, Bubbles

What treatment is available for BRAF negitive! 

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Linny's picture
Replies 2
Last reply 2/3/2015 - 10:46pm
Replies by: Anonymous, DZnDef
Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Kate_perth's picture
Replies 4
Last reply 1/31/2015 - 7:43pm
Replies by: Nan in Nebraska, Ed Williams, Anonymous, Bubbles

Are these drugs the same? I was kicked off the nivolumab trial for progression at week 12 late last year.... 

Just wondering if it's worth trying keytruda or if they are exactly the same drug, just from different companies? 

 

Anyone heard of someone who has tried both?

Kate_perth

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RJ3109's picture
Replies 6
Last reply 1/30/2015 - 7:38pm
Replies by: RJ3109, Anonymous, brewgirl68, Janner, Jubes, JustMeInCA

My brother, age 66, was just diagnosed with melanoma when a "knot" under his right arm resulted in the removal of 10 lymph nodes and the biopsy came back "melanoma".  This was  2 1/2 weeks ago.  He has since had full body CT scan that was clear and a PET scan that showed 8 mm spot on right lung and additional small spots in lymph nodes under right arm.  He has appointment with oncologist next week, but we are trying to gather as much info as possible as quickly as possible.  And I must say that just reading the postings on this site has has been very helpful to me.  

My questions, for now, are:

1.  Should he have MRI on brain or are the CT and PET scans sufficient?

2.  Would the CT and PET scans have identified a primary site if one exists on his skin?  He has not seen a dermatologist as he was unaware of any potentially cancerous places on his skin and the melanoma diagnosis was totally unexpected.

3.  While he has appointment set up with oncologist next week, I don't believe he is a melanoma specialist, and after reading here how important it is to see someone who is, I'm wondering if he should ask oncologist for referral to melanoma specialist before anything else is done.  He lives in Mississippi and will have to travel to reach a specialist, but that is ok.  He will go anywhere.

4.  Should he contact the general surgeon who removed the lymph nodes to see if they are being tested to identify any specific mutations (I understand that takes time) or wait till he sees oncologist.  

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_Paul_'s picture
Replies 6
Last reply 1/30/2015 - 9:11am

Just met with my oncologist today and I am going to start Keytruda on Tuesday. I was originally thinking to go with TIL if I showed progression from the Yervoy/radiation trial (RAD-VAX) I recently completed. However I just had a PET scan as part of the trial protocol, and it showed a new tumor at the back of my left shoulder blade and something weird lighting up between the toes of my right foot.

It will be weeks yet before I even know if the SCCA can harvest seed TIL from a large tumor that was growing inside my gallbladder which was removed last week.

My oncologist said my disease burden is low right now and since anti-PD-1 seems to be more successful when the burden is low, this seems to be the opportune time to give it a whirl. In a few weeks if the TIL can be grown, SCCA will store it cryogenically. So that will become my new plan B.

Like I have heard many people say here, now that I have made a decision (with the help of my oncologist) I need to stick with it and not look back.

Gotta say though, it feels like setting sail on a spaceship with destination unknown! But then again, I always did want to visit space... 8-)

- Paul.

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Bubbles's picture
Replies 18
Last reply 2/3/2015 - 1:19pm
Replies by: Anonymous, Bubbles, rick1981, porrige, _Paul_, Jubes, casagrayson

To be precise:  https://clinicaltrials.gov/ct2/show/NCT02301611?term=Elios&rank=1

I was diagnosed with melanoma in 2003.  I progressed to Stage IV with brain and lung mets in 2010.  I was lucky enough to participate in a Nivo trial in 2010.  I remain NED.  I am for anything...and I mean ANYTHING!!!!!!... that will help patients with melanoma.  I think most of you know that...and me...very well.  However, I am equally passionate about those who would use melanoma...and the fear that such a diagnosis creates...to make money, reputation, whatever craziness they have in their own heads...at the expense of patients and families that are suffering.  When Ms. Patten first promoted her grand melanoma treatment...I thought: What???  This is weird.  I've been living in melanoma world a long time and this trial/treatment has no rep what-so-ever with Ribas, Sosman, Flaherty, Weber, Wolchok, Sznol, Pavlick, etc.  BUT....let me check....

Here is what my husband found after many hours of research.  We both present it here:

Dear Tim and the rest of you depending on this board…

 I am writing to alert you to a possible scam unfolding on the MRF site. Twice last week, and twice today, a  poster using the name “Jane Patten” and “anonymous” proffered a clinical trial for melanoma using autologous vaccine with dendritic cells prepared via a technique patented by a Dr. Wagner who runs a clinic in the Cayman Islands. The medical director of the Perseus Clinic is Dr. George Peoples who is also the CEO of Cancer Insight, LLC. Cancer Insight is sponsoring the clinical trials in the US.  However, some of the Phase 1 and Phase 2 data used for their application was derived from patients in the Cayman Islands. Perseus pays patients $10,000.00 to participate in these trials. The data available for the Phase 1 trial from the Perseus website is garbled and looks as though the response rate is significantly less than that achieved by other available options like Yervoy, anti-pd1 and even IL2. There are only 23 evaluable patients in the cohort. Of these, 4 were NED at the start of the trial. However, since all 4 NED patients survived for the length of the study, when they are averaged in with the other patients, they skew the survival figures.  According to Perseus data, with patients presenting initially as Stage II-IV, the progression free survival was only 12.4% at 30 months. This is no better than what is historically reported for Stage IV melanoma patients generally.  The published data in the paper:  Dendritoma Vaccine for Cancer: A Hopeful Approach.  Wei, Li, Wagner.  Current Cancer Therapy Reviews. 2009.  [Check it!!!  2009, people!!!!!!!!]  touted by the Perseus web site, using their specific vaccine preparation in conjunction with IL2 in their clinical trial, demonstrates a much worse response than other trials with dendritic autologous vaccines to date. The Phase I trial of Stage IV melanoma patients had only 1 complete response and 2 stable disease events out of 10 patients. Length of response is not stated. The Phase II study had a progression free survival of 5.5 months which is less than what is expected for Stage IV melanoma patients with NO TREATMENT!!!!! The progression free survival at 5 years was 2 patients out of 15 (or 13%). The Perseus web site also presents an “infographic” which states that there is “increased life expectancy across the board”. This is illustrated by a “90%  6.5 month survival after treatment, 33% after 5 years and 10% after 12 years”. Nowhere does it indicate the Stage of the patient, other treatments utilized, etc. ALL of the “data” is based on 25 patients with melanoma. No other reputable melanoma oncologist or researcher presents such a vague and misleading face to their care/data. This trial, its proponents, and results are not credible. These posts are an obvious sales pitch. Sadly, this represents a deplorable scam.  Brent Morris, M.D.

Obviously, each of you will have to choose what is best for you and yours.  We have both dedicated a large part of our personal time and effort, with no agenda other than the best possible care and treatment, to melanoma patients (near and far) for many years.  Do what you think is best for you.  But, with the predatory nature of Ms. Patten's posts....we thought it best that you see the data for yourselves.

Wishing you all our best - Celeste and Brent Morris

chaoticallypreciselifeloveandmelanoma.blogspot.com

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JustMeInCA's picture
Replies 3
Last reply 2/3/2015 - 11:10am

Hi, all --

I posted this a couple days ago but think it got lost in the shuffle, and I'm completely overwhelmed with all the issues over the past few days. Dad was hospitalized after his PET/CT with pneumonia which caused rigors and delirium. He was discharged last night and is back home, but he's still a little confused and having cognitive issues (which were not there previously.) This they are blaming on the infection, as the elderly often exhibit confusion with systemic infections. On top of that, they lost Dad's upper denture while at the hospital, so I'm trying to find a dentist to get that done ASAP, though it seems it will be out-of-pocket. They also want him to do physical therapy, as he came out of the hospital rather shaky and unsteady.

I am also supposed to make a decision about what to do with his melanoma treatment. His PET/CT showed some shrinkage of his smallest tumors after four doses of Keytruda, but the largest ones have grown, most by just a couple mm but some quite a bit more.

For example, his report says, "Representative left lower lobe pulmonary nodule previously measuring 1.9 cm, now measures 2.6 cm ... Representative right middle lobe pulmonary nodule previously measuring 1.7 cm, now measures 2.3 cm ... Representative right upper lobe pulmonary nodule previously measuring 2.9 cm, now measures 3.6 cm"

The new tumor (since starting Keytruda) seems to be growing quickly: "Interval increase in size of hypoattenuating segment 8/4A liver lesion previously measuring 1.8 x 1.5 cm, now measuring up to 3.9 x 3.8 cm with interval increase in FDG avidityInterval from SUV Max of 4.0 to SUV Max of 7.5."

His doctor at UCSF, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:

1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;

2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;

3. Try two more infusions of Keytruda but at 2-week intervals.

I haven't heard before of people switching from one PD-1 to another, nor do I know anything about Temodar. If anyone has any insight, I would really, really appreciate it. I'm getting to the end of my rope here and really am not able to think clearly enough (or have the time to investigate enough) to feel like I can make a good decision.

Thanks very much!

 

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