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 3/15/2014 - 6:43am
Replies by: Carole K, Brent Morris, Janner, Tina D, Anonymous

I got the call today from the doctor and he stated that I have level 4 melanoma based on my biopsy.  How can this be if I haven't had any ct scans or other test done? Won't these test I'm gonna go through in the very near future determine my real level and the severity of my melanoma?

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odonoghue80's picture
Replies 6
Last reply 3/15/2014 - 1:34am
Hi, I wanted to ask a few questions for those who are waiting for clinical trials, or this who have waited, or had the "washout" before starting clinical trials. 
I am currently waiting to start for the Anti-PD1 & Anti-KIR trial. I started washing out on Feb 28. The planning set date to start trial is April 1 this year. I was feeling pretty good starting earlier this month but now I'm noticing more tumors and much more growth. Not only that, I'm starting to feel weak, bad appetite, and can't do much (swelling from a groin tumor in right leg). I can feel new subcutaneous tumors daily and have feel about 5 small spots on my scalp as well.
I still have to pass my brain MRI next Monday which makes me very nervous. While I'm in this washout and, not being on medication, I'm just allowing the melanoma to grow fast! I'm not certain if this is the best method for me. I'm not bed bound and can still walk, etc, but again, the growth is visible. 
I was also on BRAF inhibitor for the last 14 months so I'm wondering if this is making the growth happening faster?
Just curious if others are struggling with this same issue?
To be honest, I thought I was going to be feeling better while off the medication, eating well, etc. But its been the actual opposite.
Thanks,
Shane

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/14/2014 - 11:55pm

My husband has metastisized melanoma.  They tested him for the BRAF gene, but he was negative for that.  However, he was positive for the NRAS gene.

 

Does anyone have any information about that gene?

Dustilane

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Joanie60's picture
Replies 6
Last reply 3/14/2014 - 8:31pm
Replies by: Joanie60, Janner, Anonymous

I have just found this site and I think i should probably be on the International Site because right now my diagnosis is T1b but I do have a concern someone may be able to help with.

I was first diagnosed with Melanoma in 2000. It was a simple Clarks Level II, Breslow 0.23mm. On Jan 31 of this year (2014) I had a shave biopsy done of a scar which was Breslow 0.62 but reached the margins so we dont know how deep it was. Mitotis was 3/sq mm. My surgical oncologist did a wide margin excision and checked 4 sentinel lymph nodes. Thankfully, the lymph nodes were negative.

The margins on the wide excision, however, were positive for in situ melanoma (Breslow 0.32, Clark level III, no mitotic figures identified). 

He is going to do another wide margin excision. This seems very strange to me, that he removed a section (8.1cm x 4.2cm x 2.2cm) of my upper chest and still found melanoma at the 12:00 and 3:00 positions?

Has anyone been through this? Should I expect that one more wide excision will take care of this? The doctor led me to believe that sometimes they have to keep going in and re-excising, that twice might not be enough. But honesty, I was so relieved the lymph nodes were not involved and had not anticipated the margins would not be clear!!

Thanks for any thoughts you might have! And thanks from the bottom of my heart for being here.

 

Joanie  smiley

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Are you a NYC-area melanoma patient who has been successfully treated with Yervoy? If yes, and you'd like to share your story to help raise awareness of the impact of melanoma, email media@melanoma.org! We may have a great opportunity to share your story with a reporter.

Here's the catch--the reporter wants to talk with someone this weekend and preferably tomorrow (Saturday, March 15)!

Thanks in advance.

Tim--MRF

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pigs_sty's picture
Replies 4
Last reply 3/14/2014 - 2:55pm
Replies by: pigs_sty, arthurjedi007, starletwoman2007, Anonymous

Hi all,

My wife has recently been diagnosed with stage IV (small met in brain, few in liver). We have just started on Vemurafinib but to me this is only the first stage. I am looking for advice on further treatments or anything we could add to the Vem.

 

We are based in the UK so I'd love to hear from any other UK sufferers on what treatments you have had and are available in this country. I have been doing some research and it seems Christies in Manchester has some very postive treatments, including ACT.

 

We are seeing a Melanoma specialist in Newcastle on Monday with the hope of trials and other treatments.

 

Any advice / help / information is much appreciated.

 

Thanks.

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mary in Rhode Island's picture
Replies 5
Last reply 3/14/2014 - 9:33am
Replies by: mary in Rhode Island, Anonymous, Janner

Does anyone have any experience with the tens unit. Transcutaneous electrical nerve stimulator.  I would be using it for pain other than from melanoma.    Seems like the Am Ca Society  is not indicating a contraindication but I know some oncologists are not very happy with using it.  Seems like my last hope for some relief.  If it works for me.  Was hoping for some personal feedback.  Thank you in advance. Mary

 

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Calynda's picture
Replies 3
Last reply 3/14/2014 - 2:02am
Replies by: Calynda, Tina D, Anonymous

I've been busy with the baby boy in my profile picture.  He turns 10 months old on Friday the 15th.  And I just passed my 1 year N.E.D. Mark on the 7th.  Here was my last update from July:

"I originally posted back in February... That post can be found here http://www.melanoma.org/community/mpip-melanoma-patients-information-pag...

 
The quick version of the first post was that I was pregnant and got a spot checked out (that had been changing for almost a year, but hadn't had it looked at because I got pregnant, then had a miscarriage and needed a D&C, then got pregnant again. By the time we verified that pregnancy was sticking around, I was a month from changing insurance...
 
So at the point of the last post, I had a shave biopsy done and it came back as a deep malignant melanoma. They had scheduled the WLE & SLNB...
 
I found that thread and posted an update thinking it would bump it to the top, but it didn't, so here's what I posted on that thread:
 
"Re: New Here ... Calynda - (7/13/2013 - 3:39am)
I thought I'd dig up my old thread to post an update. The WLE and SLNB were successful. The margins were clear and they pulled two lymph nodes during the surgery. One of the two tested positive... At that point, we couldn't do anything more before the baby got here.
 
I had my baby boy on May 15th. I was induced at 37 1/2 weeks due to blood pressure. He's pretty much perfect. I had my PET scan on June 7th. There were two spots that they wanted to look at more closely, but were things that they usually wouldn't look twice at. One spot was in my spine and that turned out to be nothing. The other spot is a 6mm mass on my deltoid tendon that they aren't sure what it is. They don't think it's the cancer, but they couldn't rule it out.
 
I had an axillary lymph node dissection on July 5th (and still have the JP drain hanging on me). They pulled an additional 12 lymph nodes and all 12 came back negative. Yay!
 
Next week my baby boy has his two month check up on Monday, I have my post op appointment and hopefully have the drain removed on Tuesday, I have an orthopedic consult for the spot in my arm on Wednesday and get to drive 1.5 hours for a consult at a melanoma center on Friday. It'll be a busy week, but hopefully by the end of it, we'll have a plan of attack.
 
I'm feeling good. The scariest part of all this (besides the waiting) was going for the PET scan because I knew that would give us the best indication of how bad the waiting might have been.
 
I don't know if we can post pictures here... If we can, I'll share my little boy, Elliott Cole."
 
The specialist visits went well and we went over every option.  The melanoma oncologist I saw gathered some more information about my SLNB and based on that (and the fact that it had already been almost 5 months since any sign of the melanoma had been seen in my body), she took most aggressive forms of treatment off the table.  She recommended just monitoring for me and if anything came back, we'd revisit the advanced bio-chemo treatment (or whatever was most effective at the time).  
 
So, so far, so good.  I still worry every day, but I don't let it take over and diminish the joy I feel watching my son explore his world.

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Anonymous's picture
Replies 7
Last reply 3/13/2014 - 3:49pm

Just an update on my husband who moved from Stage IIIC to Stage 4 last May. He had a tumor wrapped around his spine that was resected. He then had radiation and ipilimumab after that. One of his treatments was delayed due to some bowel issues and the need to go on steroids for a week or so but he got all four in.

His PET scan in October showed some areas that were lit up (shoulder, thighs) - none too significantly - and the oncologist was hopeful that that was his body's immune system attacking those free-ranging cancer cells. He had his last PET Jan. 28. We didn't get the report but the onc called to say they need to do an upper GI/small bowel through to evaluate small bowel wall thickening. Everything else that was lit up before looks all clear. 

I'm being cautiously optimistic. I'm wondering if what's lit up on his PET could be some ulcerative colitis or something like that as opposed to a return of the melanoma. My husband previously had been on the MAVIS vaccine trial and every now and then (almost cyclical in nature) those "bumps" where he got the vaccine trial flare up and itch like crazy. Sometimes they turn purple too - and his vaccine shots ended almost a year ago! (This kind of reaction happened during his ipi treatments too. His tattoos also had a weird reaction to the ipi - search "tattoos" in the MPIP search field to read about that!) He also has some transient bowel issues when that happens. (Wondering if that's his body's immune system ramping up.)

Anyway, I'll post an update tomorrow or Wednesday. But if anybody has any insight (i.e., had small bowel issue on PET that then got the all clear) - feel free to comment away. Meanwhile, if you can spare some prayers and/or good vibes - I'll take those too. I'm really hoping he's an ipi success story that I can soon share with you all.

Take care,

Kimberly

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Pink's picture
Replies 8
Last reply 3/13/2014 - 9:12am
Replies by: Tina D, Marianne quinn, NYKaren, Anonymous, kylez, mau

These stomach cramps are killing me, feels like labor pains. Any helpful hints out there to help get rid of them

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newmanmark's picture
Replies 3
Last reply 3/13/2014 - 9:09am

Hello,

I haven't posted in a very long time.  I am now stage 4 with a recurrence to the pancreas.  I am BRAF positive.  I am just getting up to speed on the treatment options available.  I believe there is a trial here in Toronto for the Anti PD1 drug.  I am BRAF positive so I know that I qualify for that treatment.  If I am given the option of doing either, is one better than the other?  I feel like I am leaning towards anti-PD1 based on what I have read.

Thanks

Mark

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/13/2014 - 8:53am
Replies by: Tina D

Hi

I was wondering with all these new treatments like vem and ipi whether anyobe hae managed to become stable or ned for a significant period.of time? Am newly diagnosed and wonder what the future holds? Xx

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Michellemjg's picture
Replies 4
Last reply 3/12/2014 - 4:38pm

Hi there,

My husband has been experiencing severe rigors.  The uncontrollable shaking, sweating and nausea have him wiped out.  I have had a very difficult time finding out about how to best handle it.  I located a random tip on the internet recommending to warm up his extremities, which we do and find that it helps a little.   We have a heating pad at his feet and a warming blanket underneath him. The rigors can last for hours and are intense enough where he cannot hold a glass of water or get to a bathroom.

Is there a blog about patient comfort?  It seems to me with the kaleidoscope of side effects for the various drugs that patients are on it would be somewhere on this blog, but I cannot find anything so far.  I assume it is my own ineptitude as I have not used a bulletin board before.

His fever has been high for 5 days now, high as 103 and lowest at 101.  There is a predictable time table with the onset.  Does anyone have any ideas of the timing with the Benadryl and Tylenol with respect to these symptoms?  Are there any other medications anyone has heard of or has tried?  Has anyone gone off the taflinlar for a short time?  Is there any data to support the cost/benefit analysis in doing that?

So far his doctor has him taking Benadryl and Tylenol.  I try to keep lots of liquids in him smoothies and Gatorade.  Food is difficult because of the nausea.

 

Would appreciate any advise.

Thank you,

Michelle

 

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Hello all,

I will try to sum it all up quickly...I was diagnosed stage 1b in January. Had a WLE, and SLNB done at the end of January. Was told all was good with surgery, frozen sections were clear! But...2 days later, I got a call that they found some rare single and small groups of melanoma cells in one of 2 sentinel nodes taken. WHAT a kick in the gut. So...I am being induced on Monday (3/10/14) at 37 weeks, so that I can take the next steps with the melanoma. I have to have PET/CT scans done on the 21st of the month. I am TERRIFIED of this. I want to be happy and excited about my daughter's birth, but I feel so overshadowed by this melanoma. I also know that while rare, melanoma can possibly pass to the fetus. I have been told by my oncologist that he is not concerned about it passing to her, given the very small amount found in the sentinel node (greatest focus 0.3). But I also know that melanoma is tricky. I guess I'm looking or someone who has been in my situation who can offer me a bit of relief! Of course I am worried about my health, but right now, I just want my daughter to be ok. Thank you all so much for reading...

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Anyone done or heard of ablation (either radiofrequency ablation or cryablation) of a cancer tumor especially a bone tumor?
Anyone know how affective it is?

Looks like there are only a few places in the world to have it done. In the USA looks like for bone tumors only Rita Medical Systems (now AngioDynamics) in MountainView California.

Seems like they have good success for up to 7cm tumors although the larger the tumor the less successful they are.

Seems like they are using this for malignent lesions such as metastaic bone disease. (ie: where all my melanoma currently is).

Basically my current idea to keep from being paralyzed is radiation that starts tomorrow but if that doesn't get rid of the T10 vertebrae tumor I'm looking at other options for that specific tumor. Of course I will also continue the Tafinlar/Mekinist combo as I also try to get into a PD1 trial all assuming the radiation gets my spinal cord safe enough to travel. Yeah slightly complicated changing plan but I gotta try to do what I gotta do.

 

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