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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susanspotless's picture
Replies 4
Last reply 8/13/2016 - 6:13pm

 

About 3 weeks ago while showering I noticed a black spot at the base of my big toe. When it wouldnt wash off I tried scraping it off when I got out of the shower, but it didnt budge. I got busy, planning and getting ready for vacation and totally forgot about it.

Then we went on vacation where I got a bad dose of food poisoning on the last day. I am still not 100% but I started trying to scrape off that black spot again and when it still wouldn't move I started looking online.

I have had dozens of moles removed, they were all dysplastic. In Feb. 2009 I had  WLE & SNB for a stage 2A melanoma, ulcerated with a high miotic rate.  Unfortunately the WLE & SNB took place by a surgeon in a hospital AFTER the dermatologist had already excised the mole and then done his own WLE of the area.  I try my best to forget that and have done a darn good job of it for 7 1/2 years!

But now this black spot, sorry for the ugly senior citizen foot (:big toe left foot

It hasn't grown in 3 weeks or so as far as I can tell and doesn't look anything like the photos of melanoma of the nail I have seen online. I have to admit I haven't seen a dermatologist in 3 years but do you think I should start looking for one now?

susanspotless

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KAF's picture
Replies 8
Last reply 8/16/2016 - 12:15pm

hi all

Has anyone lost hair from the ipi/nivo combo?  If so, did it grow back?

Also, my eyebrows, eyelashes and other body hair are turning grey - did this happen to anyone else?

Did 7 weeks of ipi/nivo and had to stop 2 weeks ago due to pituitary inflamation 

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Mtnears's picture
Replies 17
Last reply 8/20/2016 - 11:38am
Replies by: Mtnears, jennunicorn, Ed Williams, Becky, Fen, Anonymous

First, this community has been great for getting information as we've been learning about the road ahead of us.  Now that we have more information I thought I would post it and get feedback from others!

My wife was recently diagnosed with Melanoma.  49 years old, no family history that we're aware of.  Developed a nodule under a blue mark on her skin that she had forever, decided to have it removed and we found out the results.  

Since then, she has had a PET scan which was negative as well as a WLE and sentinal node which the pathology from that was all negative as well (phew).  Tumor was on her bicep, from a report I have it says:

Tumor thickness 7mm, Clark's level V, Not ulcerated, histology unknown, no evidence of metastasis and Serum LDH elevated.  Classification T4 N0 M0 AJCC Stage IIB.

So, based on that info they want to proceed with Interferon Alpha 2B for 4 weeks at a high dose, 48 weeks at a low dose.  

Doctor said that with a IIB it is debatable on adjunct treatment but that most recommend it, especially with her age and health being good, better to attack hard now.

Any comments / suggestions / expectation setting appreciated.  We have a couple weeks before she will start treatments.

 

Thanks!

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Anonymous's picture
Anonymous
Replies 0

I was diagnosed with Stage 4 metastatic melanoma of unknown orgin in March 2014.  Over the course of two years I've been on interferon, then IL-2, Yervoy and Opvido.  Had some good response with Opvido, but have stopped responding.  I am currently enrolled in clinical study at  Sammons Cancer Cener in Dallas.  This is a genomic study and have been matched with the drug Palbociclib.  This was recently apporved for breast cancer.  Just wondering if anyone has any experience with this drug/study as it pertains to melanoma?  Been on this for 3 wks (3wks on/ 1wk off) and so far side effects are tolerable.  Thanks for any info!

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Mat's picture
Replies 14
Last reply 8/16/2016 - 12:11am

Well, it's been more than a thousand days (3 years) since my stage IV diagnosis with a heavy tumor burden.  My diagnosis came somewhat out of the blue (I didn't recognize the few symptoms I had) after being stage I ten years earlier.  Trust me, at diagnosis, no medical professional said to me--"don't worry, you have at least 3 great years left."  I've had (and may still have) multiple liver tumors and I've had 3 brain tumors.  If you read this forum and other sources, you know that those can be signs of a poor prognosis.  

Who knows what the future holds?  I take it one day at a time (or try to).  On this day, I'm happy to say that I have another set of stable scans under my belt since starting ipi-nivo in January.  I feel very fortunate to be where I'm at.  I don't assume for a minute that I have this thing beat.  Rather, I assume the opposite--my resilient melanoma cells will continue their Darwinian battle for survival.  I only hope that by the grace of our maker and highly competent medical professionals (together with some randomness and luck), I'll be able to continue my personal fight for survival and have the opportunity to continue to raise my kids, be with my wife and family, work and otherwise live life and pursue well-being.

Josh, Brian and Eva (and others, including Paul and Jamie), I've read your recent posts.  I feel your anxiety and frustration.  As you know, while not everyone has success stories, there are many folks that do (including those who have had success following multiple challenges).  I hope that you're able to move past your present challenges as quickly (and with the least amount of difficulty) as possible and that your stories are success stories.

Lastly, I've seen a few posts asking about whether ipi-nivo can work if you've otherwise failed ipi and/or PD-1.  While there is no clinical trial data on this, the answer is "yes".  (I failed both individually.)  I don't know if will work long-term, but I can tell you that it can work for at least 7 months.  I hope to be able to report back that it will continue to work for another 1,000 days--one day at a time.

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JoshF's picture
Replies 22
Last reply 8/13/2016 - 7:26pm

So I'm just going to reiterate how sick & tired I am of this crap. To give a quick update...a few posts ago I mentioned tiny bump on scalp. Derm thought probably a hair follicle. Well of course not...it was "the crap" again. Now I'm in full panic mode because I really have to question if the ipi is working. I know in many cases it takes time and their is progression. I'm just distraught...I need things to start going in my favor. I wonder if I'll even make it to the infusion date...what else could go wrong? I just need a break from it all...

Be well everyone, I pray for nothing but the best for all of you!

 Josh

Let's work for better treatments....for a cure!!!!

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Amanda's picture
Replies 1
Last reply 8/11/2016 - 7:54pm
Replies by: landlover

Hello all, I havnt been on the site in forever it seems. Most might not know my boyfriend Randys journey, but I'm sure someone will remember us.

Randy has been getting pembrolizumab, or keytruda as they call it now for 3 1/2 years and counting. He's had his ups and downs but had a good response then stable disease thereafter. He's had many multiple hospital stays from pnumonia turned septic, but recovered. A tumor in his lower lung is blocking the lowest part of the lung so he gets pnumonia easily.

He has to take pills everyday because his adrenal gland failed from the treatment.

After his recent pnumonia/sepsis episode where he was unconcious for 3 days we learned 2 new Mets were in his right and left thigh respectively with all other tumors slightly smaller or stable. They did a biopsy on one of the thigh tumors I assume to test for mutations etc. On the plus side one tumor on his chest has disappeared and the other on the chest is a bit smaller. He's still receiving the keytruda and this last dose has him feeling sick for a week after infusion. Severe fatigue. He was in bed all day for 4 days and then came out of it by day 7 and is back to feeling good and being really active.

So Dr. Ribas says the good guys and the bad guys are fighting right now. Will know more about biopsy on 2 weeks.

Oh and the side effects he was feeling this week which he didn't really get in the beginning were extreme fatigue hot and cold flashes and sweating. Sleeping a lot but still feeling tired. But a week after infusion he feels good again. Oh yeah nausea and stomach ache too. Couldn't eat. No appetite. But that's all back to normal a week after.

-Amanda-

"Give thanks in all circumstances"

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Mli0709's picture
Replies 12
Last reply 8/12/2016 - 4:30pm

Hi Everyone!

 

I just wanted to give you all an update on my mom after my recent post a couple of weeks ago (doctors gave up on my mom post - if you didnt read it). I just want to thank everyone for the amazing positive feedback I received on my post through MPIP. The advice, encouraging words and resources suggestions really helped me and motivated me to find a solution to my mom's prognosis/insurance issue. I have some good news and bad news.

 

The bad news is that my mom was recently hospitalized due to a pleural effussion that the doctors said is due to the malignancy so that means that the cancer is advancing fast. My poor mom had to get 2 thoracentesis and will have to get a permanent catheter placed in next week. If any of you have any experience with this process and have some advice on how to better manage the symptoms/catheter related issues, please let me know. They repeated a head CT in the hospital and no signs of new leasions in the brain (thank God for this). The problem is that it has been almost a month since no treatment so this concerns me. Of course the in-house oncologists gave us the same sad story when they came in the room ("I'm sorry there's nothing else that can be done for your mom") but we tried to still remain positive and tried to not let their words bring us down. My mom is doing alot better now compared to this weekend.

 

The GOOD news is that I was able to find a hospital in Dallas (4 hrs away from us) that has a melanoma clinic and accepted my mom despite having no insurance. She will be seen at UT Southwestern in Dallas and the melanoma specialist she will see is Dr. Arthur Frankle. Does anyone have any experience with him? If so I would appreciate it if you shared. I was told he has 35 years of experience in melanoma and he is the head head of UT Southwestern’s Phase 1 clinical trials. Our appointment is set for next week tuesday and although its great news that we were able to find a new doctor for a second opinion I am terrified of what they would say. I am really hoping he has a positive view on the situation and we dont walk out of that appointment with another "I'm sorry, there's nothing we can do" discussion. I am really hoping that he will be able to give us some insight and provide reasonable treatment options. I am also proactively trying to register my mom in Moffitt hospital in Florida (they also have an assistance program for cancer patients and have melanoma clinic/clinical trials) in case Dallas doesnt work out. We have a family member in Florida who told us about the hospital and said many good things about the place.

 

Lastly, I am scheduled to take my NAPLEX (pharmacy licensure examination) next week after the appointment and I am really anxious and nervous that the outcomes of the appointment will affect my performance on my exam. I have been studying very hard and I am still trying to keep a positive attitude and remain focused while I study. I thank God for this group and I am certain that God has directed me in the right direction so far despite the circumstances. At this point  I am placing all my trust in him. Please if you can, send us positive vibes and prayers as we prepare for next week's busy schedule!

 

Thank you everyone!

Maria

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landlover's picture
Replies 6
Last reply 8/11/2016 - 7:27pm
Replies by: landlover, Anonymous, rosa1, MoiraM, jennunicorn

My first CT scans & MRI were in April. I had two small lung nodules at that time & pathological nodes in my neck.  I have since had a nevk dissection and am stage 3c.  I had scans this week in preparation for joining a clinical trial- but got word today that I have something new in my left neck and that one on the nodules has grown from 3mm to 7mm, and that I have one new lung nodule. Now they have ordered a PET. 

What experiences have others had with growing lung nodules?  It seems ominous to me.  Am I about to join the stage 4 folks?  

My daughter is getting married on a week and I don't want to share this news with my family yet. 

Thank you for your input!

Peggy

Stage 3C, primary on neck, neck dissection May 2016.

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Aaron's picture
Replies 6
Last reply 8/12/2016 - 10:34pm
Replies by: KAF, Aaron, slh4448, MoiraM

Well it is what was suspected. My MRI was swollen and I have now been taken off my scheduled treatment plan. I meet with an endocrinologist tomorrow and will get another more detailed MRI. My blood test revealed that my ACTH, TSH, and cortisol levels are very low and I am now on prednisone. Strongly believe I am beating this and that this is all going to mean good things in the end. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/10/2016 - 6:00pm
Replies by: Aaron

Hello!

I had a WLE for a stage 1a lesion on my right lower calf on 07/27- 1cm margins with skin graft. I'm just wondering if you can give me any insight into how quickly I should expect it to heal?

Right now it pretty much looks the same as a week ago when they took the boot and wound vac off. It looks less like skin and more like flesh. There is no sign of infection but I'm a little worried the graft isn't taking since there is a pocket of blood in part of it.

I messaged my surgeon but it will take a day or two for him to get back to me. I'm cool with that since I'm not sure there's too much to do about it right now.

Any input from those who have had a WLE with skin graft?

Thank you!

Alc

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2016 - 1:29pm
Replies by: Anonymous, asdff12344, jennunicorn

Hi everybody:

I'm new here.  Here is a little background.  I am 27 years old, male, Asian.  I have been sunburnt before.  More importantly, I got sunburnt a lot in high school (I used to live near the beach) to the point my skin started to peel.  I have no history of skin cancer or melanoma.  I had no issues with it until now. 

Recently, I checked my already-existing mole (I think it is a mole).  I had it for a couple years (maybe 2 years).  It does not look like a mole.  It is circular with no middle (the middle is a normal skin patch).  There are no ABCDE signs.  What caught my eye was that it became darker.  Nothing changd about it, but it did grow darker.  Thus, the doctor wanted me to get a biopsy, which I did this morning.

I did go out to the sun last month.  One, in Las Vegas (swam outside for maybe an hour).  Second, July 4th (where I swam in the ocean for about an hour).  Would this make this scab/mole-looking thing darker?  Should I be worried?  The original color was a light brown.  Now it is a darker brown.

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dmturner's picture
Replies 14
Last reply 8/11/2016 - 10:00am

Hi All:

Pretty new here.  Sad but true.  My story goes as this...I work on my feet and was having an area on my heel that was sore I put up with it for a couple of months then decided to go to my podiatrist (June 2016).  He thought it was a plantar wart and cut it off and sent tissue to the labs.  "No worries, that is just what we do".  Well got a call a couple weeks later and he was frantic, called me Friday night and Saturday afternoon.  I of course called him back when I heard his message.  He already got in contact with Skin Cancer Specialist in Dallas.  Got an appointment and then a week later had the Mohls procedure.  It was pretty deep 4 mm.  So he recommends me to a doctor at Texas Oncology and see him and put in orders for a brain MRI and Pet Scan the very next day.  All came back good.  So he gets me in to see the surgical oncologist and we make a plan to have a SLNB the next following week.  (I am off work for a medical leave, can't work with big ole hole in my heel).  The one biospy behind knee was negative the one in my right groin was positive.  My leg is a bit swollen still but I have been working.

Today, just meant up with my oncologist and he suggest the "CLND of the right groin area but there is other options."  By the way I read up on thru this forum.  Yervoy.  I weigh the pros and cons and decided on Yervoy.  Because of the possible long term side effects of lymph node dissection.  I work on my feet.  I would be off work for 4-6 weeks.  I have used up sick time.  Etc.

My question.  Has anyone else decided to do this route.  I mean if it has spread and the PET scan did not detect it then the Yervoy would help with the whole body.  What if there isn't anymore cancerous lymph nodes?

Just so overwhelming.  I mean from June 10th (podiatrist) to August 9th.  All this in a 2 months span.  I have no other issues except high blood pressure and cholestral  both under control.

Thank you in advance!!!

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JohnA's picture
Replies 5
Last reply 8/9/2016 - 10:08pm
Replies by: Bubbles, mjanssentx, slh4448, Polymath, Anonymous

I saw this today and thought it would be relevant to many of you on here, as I've seen this discussion come up from time to time. Study suggests better survival and similar side effects for Nivo - Ipi - Nivo than with Ipi - Nivo - Nivo.

Here's the link, but in case it will not be allowed through, I've copied the text below too.

http://www.onclive.com/web-exclusives/weber-discusses-sequential-versus-...

 

Weber Discusses Sequential Versus Concurrent Immunotherapy in Melanoma

Laura Panjwani @OncEditorLaura
Published Online: Monday, Aug 08, 2016
 
 
 
 
 
 
 
Jeffery S. Weber, MD, PhD

Jeffery S. Weber, MD, PhD

Nivolumab (Opdivo) and ipilimumab (Yervoy) have demonstrated considerable success in the field of metastatic melanoma as both single agents and in combination. However, questions remain regarding sequencing the agents and the high toxicities that often occur when the 2 immunotherapies are used together.

To explore these challenges, OncLive spoke with Jeffery S. Weber, MD, PhD, deputy director of the Laura and Isaac Perlmutter Cancer Center, co-director of the Melanoma Program, and head of Experimental Therapeutics at NYU Langone Medical Center.

Weber discusses findings from the phase II CheckMate-064 trial, in which patients were randomized to receive either nivolumab followed by ipilimumab followed by nivolumab maintenance therapy, or ipilimumab followed by nivolumab and maintenance therapy with nivolumab. He also places the results from this sequential study in the context of findings from the phase II CheckMate-069 trial, which examined the combination of nivolumab and ipilimumab in patients with advanced melanoma.
OncLive: Could you describe the goals and design of the CheckMate-064 trial?
Weber: CheckMate-064 was a trial that was written by F. Stephen Hodi, MD, of Dana-Farber Cancer Institute, and myself, which became a Bristol-Myers Squibb–sponsored trial, that ultimately evolved to a randomized phase II trial. This was a trial in which 140 patients were randomly allocated to receive sequential immunotherapy. This means that patients were randomized 1:1 to receive 12 weeks of induction nivolumab in what we called cohort A, followed by a forced switch to 12 weeks of ipilimumab and then maintenance nivolumab every other week at 3 mg/kg until progression, toxicity, or refusal.

In cohort B, the opposite sequence was given: 12 weeks of ipilimumab at the standard dose at a schedule of 3 mg/kg every 3 weeks for 12 weeks and then a forced switch to 12 weeks of nivolumab and then maintenance nivolumab until progression, toxicity, or refusal. Cohorts A and B varied only in the reversal of the sequence, the total treatment would have been the same in either cohort; the timing was just different.

The primary endpoint was grade 3, 4, and 5 adverse events (AEs) by the end of the second induction cycle at week 25. Secondary endpoints included response rate, PFS, and a variety of biomarker studies. It was also a very important biomarker study. Patients on this trial predominantly have leukapheresis at time 0, after the first cycle at week 13, and after the second induction cycle at week 25. We had biopsies before and after in a fair number of patients.

The exploratory endpoint also included survival comparisons between the arms. The demographics showed that while there was a fairly good balance between the 2 arms, there was actually an imbalance in the PS1 patients who favored cohort A. There was also a slight imbalance in patients who had brain metastases that went the other way. There was also what appeared to be a significant imbalance in the PD-L1 population. There were more PD-L1–positive patients by the 5% in cohort A than cohort B. Therefore, there were 2 prognostic factors that appeared to favor arm A—but one that appeared to favor arm B—which was fewer patients with brain metastases.

The eligibility was very straightforward. You could have failed a systemic therapy, but you could not have had a previous PD-1/PD-L1 antibody or a CTLA-4 antibody. Most of the patients were treatment-naïve, but a good proportion of them had 1 prior systemic regimen. If you had brain metastases, you had to have them treated and be stable for at least 4 weeks. It was a metastatic cohort that one would see in any registration study, with the exception of that slight imbalance between the arms.
What were the findings regarding toxicity?
In the first induction cycle, there were no surprises as they were only receiving 1 drug. There was a 7% grade 3/4 AE rate in the nivolumab arm and about a 20% grade 3/4 AE rate in cohort B that received ipilimumab.

The surprise was that, by week 25, we actually saw more toxicity in cohort A at about 50% versus about 42% in cohort B. That is getting up to the rates that we are seeing with concurrent therapy. Please be reminded that the reason we did the trial was to try and achieve equal efficacy of concurrent therapy by sequencing the drugs to lower the toxicity.

- See more at: http://www.onclive.com/web-exclusives/weber-discusses-sequential-versus-...

If you look overall—meaning beyond week 25 to include maintenance therapy—about half of patients received maintenance treatment in either arm. There was well over a 50% rate of grade 3/4 adverse events—no deaths—but a 50% rate in arm A and a slightly lower rate in arm B. This suggests that, in terms of toxicity, we did not do better than concurrent therapy.

What were the efficacy findings?

The best overall response rates were surprisingly different. Arm A, at the end of the day, had a best overall response rate of about 54%. It was only about 30% in arm B. That is a big difference, as if somehow getting the induction of ipilimumab with the forced switch to nivolumab compromised patients’ ability to respond to the subsequent nivolumab.

We were very surprised. This translated into a very impressive difference in survival. If you look at the survival curves at 1 year, with about 18 months of total follow-up, there was a very big difference between cohorts A and cohort B. Cohort A had a survival somewhat similar to the concurrent arm of the CheckMate-069 trial, whereas cohort B was probably not even as good as the crossover arm that received ipilimumab on the CheckMate-069 trial, when many of them crossed over to nivolumab.

The hazard ratio for the difference between arm A and arm B, in terms of survival, was about .5. That is a very significant hazard ratio. If you look at the curves, they split apart very early—literally before the first evaluation at week 12, and they stay apart and appear to almost plateau. For arm A, the survival was around 60%, which is not that much different than the 69% seen in the concurrent CheckMate-069 trial that led to the approval of the concurrent regimen.

What should be taken away from these findings?

Our conclusions were that there was not a very big difference in toxicity; both arms were very similar to concurrent therapy. The hypothesis that we had when we set out was not satisfied. We could not reduce toxicity by giving sequential versus concurrent ipilimumab and nivolumab.

The other major conclusion was that one sequence was clearly superior in terms of response and survival. It is much better to get nivolumab followed by ipilimumab versus the reverse. The numbers were not that big, and there were some imbalances between the 2 arms, but those tended to cancel each other out. My impression was that I would absolutely discourage patients from receiving frontline ipilimumab and then, at some point, going to nivolumab.

It simply reinforces the opinion of many investigators in the field that you should go with nivolumab first and then, maybe, if you need to switch to ipilimumab, there is no advantage of doing that over concurrent therapy—in terms of toxicity.

 

Weber JS, Gibney G, Sullivan RJ, et al. Sequential administration of nivolumab and ipilimumab with a planned switch in patients with advanced melanoma (CheckMate 064): an open-label, randomised, phase 2 trial. Lancet Oncol. 2016;17(7):943-955.

- See more at: http://www.onclive.com/web-exclusives/weber-discusses-sequential-versus-...

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