MPIP: Melanoma Patients Information Page

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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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tkoss's picture
Replies 0

if any, impact CV will have on my treatment. God Bless me i have asked if nivo is made in USA or relys on pre-cursors from China. Nobody I asked knows.

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TimCT's picture
Replies 9
Last reply 4/6/2020 - 12:20pm
Replies by: TimCT, snoe, jennifer83, lkb, MelMel, Lucas

Hi All,

Anyone else here have a palpable tumor(s)? I'm stage 4, though its all in my lymph nodes - the left side of my neck, in my left armpit and two axillary nodes on my right side. Both areas on the left side have been pretty swollen since January, which led to my eventual diagnosis.

Had my first infusion of ipi/nivo on 2/27, and by Wednesday afternoon of this week, I could swear that the lump on my neck is smaller. I haven't had much in the way of side effects yet, just some fatigue and low grade fevers.

Anyone else here have disease you can feel? What has been your experience with it changing size once starting treatment? I'm trying not to obsess over it but its hard not to keep feeling it and looking for signs of a response to the meds, short of having more scans. Curious if anyone else here has dealt with this too. Thanks!


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Bubbles's picture
Replies 2
Last reply 4/6/2020 - 12:34pm
Replies by: lkb, caman

After yelling about it for the past TEN years!!!!!!!!!!!!!!!! - I am so glad that more and more effective adjuvant therapies (treatment given when all signs of gross melanoma has been removed either by surgery or radiation) are available for Stage III and IV melanoma patients!!! Still, it can all get pretty confusing real quick. So - this morning I put together a post that tries to pull it all together. It begins with links to the PRIMER I created that covers all current treatments for melanoma and a glossary of terms as well an article that pretty much does the same thing. Next, there is a written story of the development of adjuvant care in melanoma with pertinent links. It concludes with the story in visual form, via slides and link to a presentation made by a world renowned expert in melanoma. I hope it helps.

Here's the link:

Wishing each of you my best and the joy of a beautiful spring day no matter where you are. Yours, celeste

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caman's picture
Replies 4
Last reply 4/7/2020 - 11:25am
Replies by: caman, chrispl1974

Hi, the melanoma calculators found on the web, does it take into account the advances of immunotherapy like keytruda. My second question, what is considered a low or high tumor burden. Many thanx!!!

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texasgirl's picture
Replies 3
Last reply 4/8/2020 - 2:50pm

Has anyone had these opacities show up on a scan? What was your outcome?

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Replies by: Beany, ed williams, MarkR

Hello again everyone,

Thank you for taking the time to read my post. I just had a blood test today which is one week after infusion three of the nivo/ipo. The levels are below

ALT(GPT) 126

The doctor is a little concerned because I had diarrhea for two days last weekend but it has stopped thankfully.
My questions are:
1. Are these levels something to be concerned about?

2. Will these levels possibly go down before next Wednesday?

He will have me do another blood test next week to determine whether I can do infusion number four. He seemed to be concerned about the diarrhea.

Thank you for your help,


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tkoss's picture
Replies 3
Last reply 4/9/2020 - 3:56pm
Replies by: Bubbles, Threefitty, gopher38, Anonymous

I arrived "here" as a 2017 stage 3B. Did "probably Optivo" in a blind clinical trial through 6/18. Clear scans until mid-Feb. (very minimal side effects, and the yervoy only arm was collapsed during the study) hence the "optivo arm" surmise. Doc shares it.)

Regular quarterly CT revealed a mass in the spleen area. You can't biopsy that without big risk ("it's just a bag of blood vessels") so I had a PET CT

The PET CT revealed additional "very concerning areas" in the neck (small, non-palpable) and stomach fundous area. The plan was to biopsy the neck and get an endoscopy. The neck would be first, but not uncomplicated as it would require some isotope tracing, assembling a surgical team to work with radiation, etc.

On Friday before last, that was the plan. On Wednesday, my surgeon reversed course and closed his office. I was told all surgeries were cancelled - which we have all heard.

I called several endocrinologists and none are taking new patients, I assume the "no surgery" thing is also the case with endoscopy.

The day after the surgeon cancelled it finally clicked in my mind, "this stomach thing, if real, its gonna be inoperable and I'm done".

Eventually I was able to reach my oncologist in the trial. I stated flatly "I can't get the biopsies, the stomach would be inoperable, I need to be unblinded and put on the combo immediately".

To my dismay, joy, surprise and lack of surprise the MD quickly agreed and said he would submit an emergency unblinding request to BMS.

In a way, when biopsy became unavailable, it has only accelerated the timetable to get to re-treatment. We are going on the "best evidence available" now which is only the PET CT.

The decision to "risk uneeded treatment" if the biopsies came back negative is easy in my mind. I am awaiting the unblinding decision this weekend. I'll finally learn by BRAF status too.

So, I feel I am on the right course, and perversely this may work in my favor.

I'm just putting this out there to see if others with my bad timing are getting biopsies done. For our beloved expert panel; "do you have any other insights given this - hopefully fairly singular - set of facts?"

Thank you, be safe.

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Jen07's picture
Replies 3
Last reply 4/9/2020 - 9:05pm
Replies by: doragsda, JudiAU, MelMel

My husband is currently Stage 4. He has not had any treatment since November 2019 due to circumstances that I don't want to completely get into at this time. Since then, he's had a couple of new places to show up in his groin and has most recently in the past couple of weeks been experiencing dizziness and has passed out a couple of times. He hasn't had a scan and is refusing to go see the Dr. or have scans done right now. I do not know what could be causing the dizzy spells and passing out. Could anyone give me any insight on if they've experienced this and what it could possibly mean?

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MarkR's picture
Replies 9
Last reply 4/11/2020 - 7:15am

Reaching out to those that were on the original Ipi/Nivo trials....
Had a call today that bloods show increase in Liver enzymes to Grade 1 for one enzyme and Grade 2 for the other. Have to go back tomorrow for more bloods. For those on the original trials did you get to go back into the trial if you had to pause treatment for toxicity?
At the moment I think I can carry on but if it rips into Grade 3 I guess that will be it. Feedback appreciated

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jjk17's picture
Replies 5
Last reply 4/13/2020 - 7:13am
Replies by: LRS88, jjk17, Anonymous, AshleyS, Christiane29


I know this subject has been brought up before, but was just seeking for some more insight.

I was Stage IIIb . Had tumor removed and couple of lymph nodes that it had spread to. As of today I have been cancer free for 2 1/2 yrs now. My husband and I are talking about pregnancy again and it scares me. I had a successful first pregnancy, my spot came up about 1 year after.

We have been told all the risks ect. Just looking for some advice.....Is it worth it? I feel so uneasy about this and it's really taking a toll on my husband.....

Any advice is greatly appreciated.

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caman's picture
Replies 6
Last reply 4/13/2020 - 3:06pm
Replies by: caman, Patrisa, Tsvetochka, Anonymous

It seems my cancerous lymph node shrank a little bit. Might be my imagination though . I'm getting a little impatient, and its only been a week. Anyone here have any experience with this drug or opdivo ?

Any input would be appreciated. Thank you!!

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Anni's picture
Replies 3
Last reply 4/15/2020 - 10:05am
Replies by: MelMel, Anni

Hi has anyone had a seizure reaction to immunotherapy, ipilimumab and nivolumab? My sister had 2 infusions today and has had a seizure this evening. Thnaks in advance

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Beany's picture
Replies 5
Last reply 4/15/2020 - 2:23pm
Replies by: Beany, Bubbles, MelMel

Hello all,

These are my enzymes since completing infusions two and three of nivo/ipi combo.

AST (GOT) 39 28 352
ALT (GPT) 60 126 635

The doctor has ordered a liver biopsy to check possible damage. He said if the numbers don't start to drop, I will go on high dose prednisone.
What do you think? Possible increase in nets in liver? Or just side effects from the combo? The met in my lung is shrinking quite quickly as seen in a recent xray. I will have a CT scan tomorrow.


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AmyM's picture
Replies 8
Last reply 4/16/2020 - 2:57am
Replies by: AmyM, MelMel, Bubbles, Anonymous, JudiAU

My 55 year old dad has just been diagnosed with stage 4 melanoma consisting of brain mets. He is awaiting ct chest abdo pelvis this week. Dad previously had stage 3b last year after groin dissection. The oncologist at present is saying targeted therapy consisting of encorafenib (Braftovi) & binometinib (Mektovi) is the only option. Due to supply issues with covid we have only had 2 days of tablets.
Dad is on steroids at present which hopefully will be weaned over the next 4-5 weeks & it would be great if he could get on immunotherapy thereafter. I was wondering is there anyone that had sterotactic radiosurgery for brain mets as I’m wondering would that be good while we are on targeted therapy?
The consultant said the prognosis isn’t good. My dad was working a few weeks ago and is a strong independent man so I’m trying to remain hopeful and try & make the most of treatment options.
Dad is BRAF positive.
Dad has 4 brain mets with 1 less than 2cm 1 less than 3cm, one which is just over 3cm and another which the consultant didn’t seem as bothered about is 4cm.
I was wondering if dad could even benefit from sterotactic radiosurgery on the smaller mets that are in the occipital partietal region. I’m going to discuss this with the oncologist but thought I’d post here for any useful advice / tips.

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