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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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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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
Replies 2
Last reply 7/13/2017 - 11:19pm

Hi everyone, first post here and need some help. October 2016 I was diagnosed with Stage 1A .68mm superficial spreading melanoma. Did not have a lymph node biopsied at the time as my derm said wasn't needed with the depth and 0 mitosis and no lympatic invasion present and no ulceration. It was removed near my belt line on my left side. A month later I still had some pain after the WLE and decided to go have an ultrasound. It came back with a 1.8cm lymph node showing up and that scared me so I went to see Dr Luke. He gave me a pet scan and ct scan and the lymph node didn't show up anymore and nothing else was seen of any concern. He said it was most likely due to the wle and thats why it puffed up and went away. I also did the decision dx test and it came back that I was in the top half of the best category of it not returning. 

Fast forward to two weeks ago and I had always been a little suspicious of a couple marks on my WLE scar so when I was at my check up I had my derm biopsy them. They came back as ruptured hair follicles but the biopsy area became inflamed and most likely infected. 3 days after the biopsy which is on the front middle of my groin I could feel pain in the back top of my leg and feel what I believe is an inflamed lymph node but the whole area was painful also. It became very sore basically overnight 3 days after the biopsy when everything was inflamed. The area above the lymph node was also bruised and even my leg muscle hurt and the skin above it was puffy. Now two weeks later I went back to the derm and he did a test to see if I have some type of infection from the biopsy as my body has never healed very well. He didn't seem very concerned about the lymph node as it it in the back of my leg and the melanoma was top/middle of my groin and said would have gone to crease between my leg and groin. He said he doesn't even know if there are lymph nodes in this area around the top upper part of my leg and even if it was he thinks it would be due to an infection or injury. I really trust him and he is about the best melanoma specialist derm I could find. 

My question is I have super anxiety over everything to do with disease since October and I found out about all this two weeks before my first son was born. So now I scheduled an appointment with an oncologist to have the lymph node or whatever it is removed and biopsied next Thursday. In the past week the lymph node no longer hurts but I don't belive it has gotten any bigger or smaller. I guess I would say its the size of a pea or so. I would have never even known it was there if it hadn't started hurting as its pretty deep. My question is do you think its needed to have the surgery to have this removed? My derm doesn't think so but since October I've been an anxiety filled wreck and this has pushed me over the top. I can't sleep or eat and I'm really missing out on time with my family. Am I doing the right thing? Thanks in advance.

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http://news.harvard.edu/gazette/story/2017/07/cancer-killing-viruses-may...

I've seen a couple similar studies in recent weeks. Can anyone help me figure out if there are ongoing or upcoming clinincal trials?

My wife is Stage IV with multiple brain mets - and apparently not responding to Keytruda. THis may be our next step.

Thanks!

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LAC's picture
Replies 6
Last reply 7/13/2017 - 10:29pm
Replies by: LAC, DocPain, Anonymous, Patina, jennunicorn

My father had severe side effects after his 3d Yervoy/Opdivo treatment.  He developed colitis, became dehydrated, very weak and confused.  Mom had him in the ER 3 times over a 5 week period.   He's lost a ton of weight, is very weak, and mentally he has moments of confusion that are concerning.  

Has anyone experienced the severity of these side effects, including "brain fog" or confusion?  If so, did the patient get better or back to normal?  How long did it take?  We see improvement in his eating and stamina finally...very little but at least it's progress.  However, his confusion and slurred speech are still very concerning.

Thank you

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Whats the best way to track skin changes? Is there one service you guys recommend over another?

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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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DZnDef's picture
Replies 4
Last reply 7/13/2017 - 5:38am
Replies by: Jeff_in_FL, snowkitten, DZnDef, Anonymous

I have loads of moles. No idea how many.  For the past few months many moles on my torso along the sides changed in texture.  Instead of feeling like the rest of my skin, they became rough and dry and almost scab-like.  While lying in bed, I absently scratched at one and it came off in my hand.  No pain, no blood.  Normal skin underneath.  A few others felt similar so I checked in the bathroom to make sure they were really moles and not something else.  Yup, those were my moles.  I peeled off four more the same way before I hit one that was a tad sensitive so I left the rest alone.

I'm already Stage IV with lung mets so I'm not overly concerned about any of these being melanomas, just curious if anyone else has experienced something like this and what it might mean.  I don't see my oncologist again until January.  It's not the first time this has happened with my moles.  The first time I was a teenager (I'm 49 now).  Then it happened again about ten years ago.  And now this is the third time that I can remember.  Anyone have any insight?  Has this happened to anyone else?

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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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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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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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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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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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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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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smiller's picture
Replies 8
Last reply 7/11/2017 - 2:48pm
Replies by: Hukill, smiller, Anonymous, Bubbles, Swanee

   After three Opdivo/Yervoy treatments, my husband had to stop treatment because of all the side effects.  You can see previous posts with more detail.  One thing still bothering him is very thick saliva that gets stuck in throat and makes it difficult to eat.  He has tried so many things--from mouthwash to sinus meds (thinking it was just drainage).  His  oncologist says this is a rare side effect. His last treatment was May 16th and this is still goimg on!  He needs to gain weight (lost forty lbs) and if he can just make this stop, eating would be a pleasure again.

    I am hoping somone can offer some advice--thanks in advance!

Jim's wife

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