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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Anonymous's picture
Anonymous
Replies 5
Last reply 7/13/2017 - 9:30am

Hi there,
I am new to this forum and wanted to share my partners story of melanoma. He is currently Stage 4 with met to the brain.
He was first diagnosed 1.5 years ago age 26 with Stage 3 spread to lymph nodes. He underwent surgery but unfortunately a PET scan revealed the cancer had spread to his lungs liver and bowel. He underwent combined immunotherapy nivolumab and ipi, he managed 2 rounds of treatment before developing severe colitis and we had to stop treatment. A scan shortly after revealed very good news- all signs of his tumours had vanished thanks to this miracle treatment.
Unfortunately more bad news followed, 3 months later he was taken ill with severe headache and blurred vision, a brain scan showed the melanoma had returned as a 6cm tumour in his brain. We were devastated beyond belief. He underwent emergency surgery where they were able to remove the majority of the tumour. A small amount remained which was treated with gamma knife radiotherapy. For the last month he has been having nivolumab infusions once every 2 weeks, he is unable to go back on the combined treatment as his side effects were so severe. He has had an incredibly good melanoma specialist throughout this whole ordeal and currently his next whole body scan is scheduled for next month. He is relatively stable, has returned to work (can you believe!) however he has lost a portion of vision in his left eye as a result and feels tired constantly. As it stands his specialist has said we must wait and see what the next scan shows and move forward from there.

We have both struggled hard throughout this process. He has fought this disease hard and has always remained strong, optimistic and brace despite everything. I have lots of anxiety about our situation and want to remain strong to support him. I wondered if anyone had a similar experience and had success with treating tumours in the brain? I have sleepless nights constantly worrying about what the future will bring, feel alone and scared as I don't want to burden my partner with my worry for him. Hoping to connect with others and find some comfort.

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Anonymous's picture
Anonymous
Replies 17
Last reply 7/17/2017 - 1:28pm

I could use some help deciding between two trials:

The first is an open (non-binded) trial that is about to close. I would either get Ipi or Pembro at the standard dosage for each, although as I understand it, they will not tapper the Ipi if you have a negative reaction; they will just stop an monitor. Also, I have a 50 / 50 shot at either drug.

The other trial has 3 options, either a combo of Ipi and Nivo, or either of the drugs independently.  I have a 40% chance at getting the combo, a 40% chance of getting just Nivo, or a 20% chance of getting Ipi.

The only problem is the 2nd study is blind. I won't know which I am getting, and b/c one of the options is a trial, I will have to spend a bunch of extra time getting placebo drugs based on the drug administration calendar (...about 15 extra infusion visits).

I'm torn...

- On the one hand, I'll know exactly what I'm getting, but have a lower chance of getting a (potentially) "better" drug -- In this case Keytruda.

- On the other hand, I won't know what I'm getting, but I'll have a better chance of getting one of the "better" drugs (Nivo) and possibly even a combo (Nivo & Ipi).

There are toxicity concerns as well, obviously. But given that it's highly situational it's hard to really factor that into the decision, although the 10mg dosage of Yervoy scares me quite a bit (particuarly without the ability to taper).

Any thoughts or suggestions??

 

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MTCowhand's picture
Replies 5
Last reply 7/14/2017 - 2:15am

Hello everybody, just joining this club no one wants to belong to with this second post today.  I was diagnosed with desmoplasatic melanoma, stage 2b, two months ago.  The experts here on this forum will recognize DM for being locally aggressive with a propensity to recur, but rarely metastatic on presentation.  As a result, local control with WLE backed by SLNB is the first order of business, which I did a month ago.  The lesion (on my scalp) turned out to be 6.6 mm deep, but otherwise totally devoid of other poor prognostic factors (low mitotic rate, no ulceration, no neurotropism, no vascular/lymph invasion -- the SLNB was also negative -- clear margins and so on).  However, because DM is rare in the melanoma world (4% of all cases), not a lot of research has been done on this beast insofar as to what to do after the WLE and SLNB, with basically two schools of thought splitting between "wait and watch" and using radiation in an adjuvant setting to further reduce the chances of recurrence (because they can lead to metastasis).  Each of these ideas are backed by a few small studies, most retrospective, hence my reason for posting today looking for some help.  Has anyone out there dealt with DM and, if so, how -- wait and watch after surgery alone, or surgery followed by radiation?  Any advice/comments would be most welcome, my thanks.

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DZnDef's picture
Replies 17
Last reply 7/19/2017 - 6:09pm

Yes, my oncologist mentioned that word yesterday.  Then he backed off as I still have a couple of tiny spots in my left lung but he described them as likely remnants/scarring.  The brain is completely clear of visibly detectable mets as of yesterday's ct w and w/o contrast.  No new spots anywhere.  I celebrated yesterday with a chocolate milkshake.  However, I am really having difficulty absorbing this news.  The doctor's office is not where I am used to hearing good things.  I handle bad news quite well (lots of practice) but I just don't trust good news.  My labs aren't back yet so maybe there's something there.

I am also in a somewhat awkward position as we have no idea whether I am a responder to Keytruda or not.  This could all be Tafinlar/Mekenist.  In any event, I have been given a second reprieve from this disease (the first being my good scans three months ago).  I will have to learn to accept it.  Time to focus on rehab for my lingering brain damage (I walk just like a toddler.  I have newfound respect for toddlers.  Learning to balance is hard!)

So after five years at Stage IV, the beast is on the run!  Life is good, and longer than I was expecting!  Sweet!

I hope you all hear good news at your next appointment!

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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Ridingaroundwith27Jennifers's picture
Replies 19
Last reply 7/14/2017 - 12:16am

Hi Everyone,

Today's MRI was clear!  That's two in a row post radiation.  I got used to getting bad news and so I was feeling more worried than usual.  Today was the first time I was nervous in the machine.  It was a little strange that I got nervous.  I wasn't expecting it.  I know this is good news.  I should be very happy.  I will be.  It just isn't real yet.  No new tumors, no scar tissue.  The brain is OK.  

Here's hoping the news stays positive.  Good wishes to you all.

Jennifer

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/12/2017 - 2:14pm
Replies by: MTCowhand

Hello all - what a phenomenal group you are and I apologize for posting on a very benign-seeming result, but I know young people who have died of melanoma. My son is "moley" and has a dad, aunt and great aunt who've had melanomas. He had one spot on his forehead that looked too black to me and the derm wasn't too eager to remove it. My husband said, we don't care if there's a small scar, let's get it off. It's come back as a Spitz nevi. I have seen some conflicting things about Spitz and I'm wondering what my vigilance on his spots should be now, and whether I should get a second look on his sample. This derm was lovely but I'm not sure she was very up on anything.  TIA! 

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Jeff_in_FL's picture
Replies 3
Last reply 7/11/2017 - 3:38pm

Hi all,

Sorry if this question sounds stupid, but wondering how a "Primary" lesion is determined. Mine was Nodular, and it came out of nowhere ...was not an existing mole. I haven't felt well in months, and actually lost over 20 pounds since this past December. I actually had to request a PET scan (scheduled for 7/21) as my Derm didn't think it was necessary ...even after telling her that I have been having night sweats. All I asked of her was her assurance that the lesion that was removed was the primary one. She couldn't answer that. Gee, why is ordering a PET scan such a difficult thing to do? At least it could provide some peace of mind when there are unanswered questions.

Was I out of line asking for this? Should a patient go on blind faith? I had my first "three-month" checkup, and was out of there within about 10 minutes. She just did a quick go-over and sent me on my way. Wondering how a physician can detect changes with nothing to compare to ...photos?

I find this whole thing quite frustrating.

(((Hugs))) to everyone!

-Jeff

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Mandy38654's picture
Replies 3
Last reply 7/12/2017 - 9:11pm

I had a subq nodule removed today from my wle incision that was three years ago. Previous stage two nodular melanoma. Today the sample was very deep and growing downward much more than we expected. The derm commented over and over how hard it was. Like rock hard like bone.  

Anyone rememeber or know what theirs felt like after biopsy? Was the sample hard or soft?  Any characteristics you could share? It looked a lot like my initial removal but I don't remember them saying it was hard or anything like that before. Can't find any article on what melanoma feels like when it is removed. 

Thanks

mandy 

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MovingOn's picture
Replies 4
Last reply 7/11/2017 - 4:29pm

Can anyone describe what it feels like when Melanoma goes into a bone? Does the bone hurt? Does the bone hurt if pressed on? Or does it not hurt physically?

I most likely have arthritis developing in my clavicle / shoulder bone (PET scan showed uptake there but a CT scan (without contrast) didn't find anything unusual), however, my melanoma lymph nodes were only inches away from there. So both myself and my Oncologist are a little anxious for the next scan in 3 months.

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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Oldwife's picture
Replies 8
Last reply 7/11/2017 - 9:23am

My husband has stage 4 melanoma, is BRAF + and on Taf/Mek for the last 3 months. At first he felt a lot better than he has in some years, but then got what he calls a virus. Recurring fevers, sweats, fatigue. Sound familiar here?

He doesn't want to talk about the melanoma, and often procrastinates on diagnostics like the CT scan now due, or even getting his INR checked, since one of those drugs messes with his clotting time.

How do I deal with procrastination and denial? I don't have much of anyone to talk to. Thanks.

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Nemesis's picture
Replies 4
Last reply 7/20/2017 - 10:42pm
Replies by: stotesbery, Janner, Anonymous

Of moving from stage I to further stages. I can't seem to find a definite answer. Is there one?

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Anonymous's picture
Replies 7
Last reply 7/12/2017 - 7:21pm

[First off, thanks to everyone on this board. This community has been a HUGE help in my journey. I'm fortunate to have many great friends and a very supportive family, but it's always nice to interact with others who know the emotions we are all experiencing first hand.]

I was diagnosed with Stage IIIc Melanoma back in May (41 year old male). I've had the SLNB and the WLE, as well as the full lymph node disection (under my left arm).  

I'm sure the surgeries will turn out to be some of the easier parts of this journey, but they are taking a bit of a toll on my psyche at this point. It's not the pain as much as the constant reminder of this disease. It's impossible to forget about cancer when you have a drain bag tied to your leg, and a 4-inch scar on my chest that I get to stare at every morning.

I did finally get my drain out last Friday after 31 days. I thought I'd start to move beyond this part, but I was still draining quite a bit when they took it out (60-70cc / day), which has resulted in continuous oozing from the drain site. I'm now back to changing the bandages every 3-hours again.

These things are all so minor in the grand scheme of things, but it adds up over the course of the treatments with the cumulative stress it causes. With immunotherapy around the corner, and more potential side effects looming, I'm finding it very difficult to focus at work.

I took 3-weeks off work after the last surgery, which helped clear my head a bit. I would take more time off now, but I feel like I should save this time for when I might really need it. 

I think the bigger issue for me now is how this whole situation has changed my life. I am one of those people who define their individual success, by their success at work. It makes me feel very fulfilled and personally happy when I'm succeeding at my job and doing things most people would not do to get ahead (i.e. working 70-80 hour weeks for 10+ years).

I thought coming back to work would help, and to some extent it has, but I also partially blame work for my cancer. I imagine the stress I've been subjecting myself to (or allowed myself to feel) over my ~18 year career has in some part killed my immune system enough to assist this cancer in taking hold. I'm very reticent to throw myself back into the mix at work with immunotherapy just around the corner. 

No real questions here. I guess I'm just curious to know...

...if anyone else had a similar reaction? Does it get better? Did you move on from work? Or did you eventually refocus? How'd your career change during / after this process?

Thanks everyone, and stay strong! :)

 

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Jme's picture
Replies 5
Last reply 7/10/2017 - 10:14pm
Replies by: Lzypt, Newmanbell, Anonymous, adrianc, geriakt

Hello All,

I am posting for my husband who was diagnosed with stage 3C Melanoma- with several excisions and lymph node involvement.  We started a trial -blind of ipi vs nivo in Sept 2015 and completed the infusions in Sept 2016- with little side effects during the treatment.  However- towards the end of the infusions- He started getting what has been referred to as Trigiminal Nerve Pain on the right side of his face-primarily under the eye- which was associated to the 5th cranial nerve.  Scans showed no evidence of blood vessels or tumor pressing on the nerve.  Then came the migranes.  We have been trying to figure trigger relations in regards to the migranes. We haven't been willing to go on epilepsy meds per neurologist.  The migranes seem to be  brought on by stress of any type and perhaps computer related- we have seen opthomologist-changed glasses, contacts, etc but hasnt seemed to have helped. Migrane medicines do not help either. (Relpax)  After research- we have found that there is such a thing as immune related hypophysitis which could cause migranes and occular involvement.  Scans reveal no evidence of pituitary enlargement or change-- however- thyroid functions were scattered throughout treatment but I'm guessing wasnt enough to merrit  medicine as melanoma doctor never mentioned.  It wasn't anything that we noticed until we went back and looked at the labwork over the course of treatment.  Thyroid level and bloodwork are within normal range now but migranes are causing significant LIFE CHANGE.  Our melanoma doctor has said that we could TRY a short dose of steroids but I am not sure she is convinced this is treatment related.  Has anyone else had these symptoms during or post  immunotherapy treatment or can anyone offer any feedback.  We HAVE to get answers as to how to get the migranes under control.  I might add that we are in scanning phase of the trial-every 3 months with no evidence of disease. 

Thanks,

Jenny

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D1983j's picture
Replies 5
Last reply 7/12/2017 - 9:49am
Replies by: Anonymous, Janner, MrG

I had melanoma stage 1. Everything has been fine. At my last apt I had a shave biopsy of a mole. It was done before I knew it and I thought she was going to punch biopsy it. Anyway some of the mole was left over. It was completely benign which I was thankful for. My question is should I be concerned about the left over part if it's not growing. This was a very dark mole and pretty large. What's left is like a freckle. I really don't want to go through another biopsy. In the future I'll have them all excised if needed. Thanks.

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/22/2017 - 2:05am
Replies by: Anonymous, Gene_S, jennunicorn, DZnDef, SABKLYN, cammeronwall

Hello to everyone. First of all I would like to express to all of you how much I admire you for your courage and your amazing personalities. You are all so strong and you proved to all those google statistics that they are all wrong. I was checking your forum since 2 years now but I have never entered it as a member and this is my first post. I was visiting your forum regularly since I had a mole on my back for years now and I was trying to find ways to see what are the symptoms for a melanoma mole. My mole was always the same it never changed. The werid thing was that the last 2 month there was itching on the mole but nothing more than that, A month ago I was to the beach with a dermatologist friend and he insisted that the mole I had was looking really suspicious for a melanoma and that I should definitely remove it and send it for pathology. I took the decision to remove it 2 weeks ago and a week ago I was diagnosed with superficial spreading melanoma with vertical and radial phase. The breslow depth is 1.4mm , clark level 3, 3 mitosis , no ulceration, no microsatellites,no regression, no perineaural or lymphatic invation. SInce that day I was really in a bit shock but after visiting a lot your forum and your stories I was feeling relieved that I was in an early stage. But 3 days ago I have visited my surgeon in order to make me a wide excision and also sentinel lymph node removal and he was telling me all the time that nothing is predictable with melanoma and I was feeling like he was preparing me that I will definitely have micrometastasis in my lymph nodes. I am now waiting for the biopsy results but I am completely in a panic attack everytime I am thinking of his words. Unfortunately I have none to share my thoughts and none can help me feel a bit more relaxed until the biopsy results. I am apologising to all of you for my post since I know that my case might be easier than what you are passing. It is just that I am not as strong as you are. I wish I could have your courage and be calm. Thank you all in advance.

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