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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Maureen038's picture
Replies 16
Last reply 1/21/2015 - 6:40pm
Replies by: Maureen038, Bubbles, Brendan, Mat, JoshF, Anonymous, BrianP

My husband compled his second VATS surgery this morning. His first VATS surgery was in October 2013. They removed a 4 cm nodule and a very tiny one. The right lung is cancer free for now and hopefully ever. He is at NIH and they are taking the tissue and making TIL cells to freeze in case he needs them.

There are a few very tiny nodules in the left lung and hopefully when he restarts Opdivo they will vanish!! We are feeling cautiously optimistic!! After so many ups and downs, it feels great to be in this place!! Best wishes to everyone!!

Maureen

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Jewel's picture
Replies 5
Last reply 1/21/2015 - 5:55am
Replies by: Mat, _Paul_, rick1981, Gene_S

Ken is going to have his 4th dose of Yervoy tomorrow. How long was it before you had a scan? From my understanding it is really the one taken 3 months after that they determine a responce? True, False, your experiences. Ken went into this with resected disease, but the node was bleeding and the size of a fist. Thanks for any and all help. They are also talking about possible maintanance doses?

Jewel

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Jsneathen21's picture
Replies 9
Last reply 1/21/2015 - 3:58pm

Dr called! No signs of the melanoma metastasizing in the lymph nodes!! All clear!! Should be cancer free now!!!

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JustMeInCA's picture
Replies 2
Last reply 1/21/2015 - 4:35am
Replies by: JustMeInCA, Janner

I have a question that I will ask my father's oncologist when I see him in a few days but that I thought I'd throw out here in case anyone has any thoughts or information.

My dad has now done four infusions of Keytruda, spaced three weeks apart. I've noticed that 3 days or so after each infusion, the fatigue hits him and his pain (both neuropathic and at the site of his leg tumors) goes through the roof. This lasts about 10 days (the Week of Hell for both of us), and then he's back to normal, better than ever. He then has about a week of feeling good before the next infusion comes.

The problem has been that he's so bad during the Week of Hell that he doesn't want to eat and loses weight. His appetite return afterwards, but he's still been dropping a couple pounds with each infusion. After his last infusion, we ended up not being able to get in until four weeks later, so he's actually now having two weeks, rather than one, of feeling good and has put a little weight back on.

What I'm wondering is whether it would be detrimental to space the infusions four weeks apart rather than three. He just turned 83, so it may be that the infusions are harder on him than on younger people; I don't know. But I'd like him to have the chance to have more of a breather between infusions and be able to enjoy life more, especially at his age when, melanoma or not, he can't count on a lot of years to come.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/22/2015 - 10:35pm
Replies by: Anonymous, Maureen038, JustMeInCA
Hello all,
 
 
 
my son - who is on Merck Anti PD-1 for 7 weeks started vomitng in he last few days. Is this a known side effect?
 
The drug exhausting him :-(
 
 
 
Thanks,
 

 

Mom

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Colleen66's picture
Replies 7
Last reply 1/22/2015 - 1:19am

Hi all.

I'll be brief.  I'm 3b after surgeries and Interferon, stable at two years this month.  Last chest x-ray in Nov. clear.  

In the last 3 weeks I have developed issues with my breasts.  Sequence of events are:  Swelliing left breast, at least a cup size, then pain in entire breast.  unusual puckering extending a bit downward from areola.  large masses of tissue formed, it's hard to describe but like a quarter breast would be very thick. the mass is very lumpy and the size of the masses will increase and decrease over a period of time.  I can feel at least 5 nodes in my neck but the area at the outside breast toward armpit is too lumpy and swollen to feel anything accurately.  The right side breast has followed the same evolution but with a two day delay. 

My Onc. scheduled a Diagnostic Mam and US for tomorrow.  I don't know whether to think that this is Mel or Breast Cancer.  Most benign issues of the breast involve breastfeeding etc.  I'll be 49 next month and had a hysterectomy in 1995 but still have ovaries.  No signs of menopause yet so I don't suspect this is Hormonal.  I scanned some breast cancer types and Inflammatory Breast Cancer fits.  I'm not convinced it's melanoma because of area and the pain, swelling and large masses involved.  

I know it's unusual to have biopsies during scan appointments but I feel like I can't leave that appointment without at least some type of biopsy.  Is this something they could possible do?  Should I become Miss Bitch and demand it?  With this evolving so quickly I don't thing a week between scans, biopsies, etc. is appropriate.  

I'm getting the tests done at the Comprehensive Breast Center (Stephanie Speilman Center) part of OSU Cancer Centers.  My Onc is at the James Cancer Center so it's all connected and I'm comfortable with that. 

This has happened so suddenly and quite frankly, I'm beyond concerned and pretty darn scared.

Any thoughts on this at all are welcome.  

Colleen

Live!

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My neck tumors are pressing on my throat now all the time. If feels like they are obstructing my throat. Last Saturday I made the mistake of eating solid food and I literally almost choked to death. Now I can't eat much. I have to sleep in recliner for my back but can't hardly sleep anymore with this stuff pressing on throat waking me back up all the time.

Any ideas what I can do for relief?

im supposed to start radiation tomorrow Monday but he says it will get worse before it gets better. I never did hear from my med onc surgeon as to why he couldn't surgery it.

my anxiety is through the roof. Even just sitting up and doing nothing I start choking. I think I only have a couple days fight left in me if I can't get relief.

i am so angry at myself for allowing that med onc to delay the biopsy 29 days. Stupid mistake. I didn't have this issue nearly this bad back then.

Artie

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Jsneathen21's picture
Replies 4
Last reply 1/18/2015 - 11:35pm

I had a sentinel node biopsy on January 13th almost 6 days again now also had a skin graft on my lower shin so my calf and foot are wrapped up in a splint.. My question is was anyone achey at all? I'm not really swelling at all but my upper thigh muscle is super achey ... I thought this was weird.. Do you think it is muscle swelling from surgery!? I looked up Lymphadema and I am pretty certain it's not that as I said the swelling really isn't even there.. Just kinda achey.. Thanks in advance hope your responses kill some of my anxiety !

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POW's picture
Replies 5
Last reply 1/20/2015 - 3:05pm

Some of you may remember Don Lee of Worcester, MASS. Don was diagnosed out of the blue with Stage IV including brain mets almost 2 years ago. Don and his wife Janet fought valiently. He tried every available treatment and benefitted from most of them. Surviving 2 years with a widely disseminated melanoma is remarkable and he made the most of his time. He got to dance at one daughter's wedding and to see his first grandchild born and begin to walk. He enjoyed walks on the beach with Janet, downsizing to a gorgeous condo with no upkeep, and celebrating their 40th wedding anniversary and Cecelia's first Christmas. But eventually the cancer won out. He passed last Thursday. Here is a very nice obituary for Don Lee online. 

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Eileensulliv's picture
Replies 10
Last reply 1/20/2015 - 1:30pm

In 2006 I had a rather quick battle with melanoma in my back. I had WLE and SNB done at University of Chicago Hospital and was considered cancer free. In October 2014 the area between my melanoma scar and the scar under my arm from the SNB swelled up, and was red and painful. I have lymphedema in both arms, so reaching the area is difficult. I saw my oncologist who said it could be an abscess, so she prescribed antibiotics. She said to be safe I should have a CT. The CT was done about a week later, after antibiotics already took effect. The technician was commenting on the lump of my melanoma scar, and I told him that is not where the pain was, it was off to the left. When I got home and saw where he put a mark for the scan, I called to see if it was done in the right spot. My onc sent me to see a surgeon, and the surgeon said the CT only showed scar tissue. She felt around my scar and said everything was fine. I told her my scar and my back feel "tight" lately, and that I felt like something was there. She said I was fine. Two weeks later, the area starts to swell again. My onc was out of town, so I saw the nurse practitioner, after they started me on a different antibiotic for two days. I was very firm that I needed some answers, and wanted this thing taken out! The nurse practitioner definitely felt something, and ordered ultrasound. She said it could be a lipoma that is just getting irritated and infected because it is right on my bra line. The ultrasound technician took some pictures of it, and my onc said I should see the surgeon to have it biopsied and removed. I finally got in to see the surgeon after the holidays, and she did a core needle biopsy, which came back as melanoma. They sent me for a PET scan, and the onc gave me the results two days ago... The spot in my back lit up, as well as in my bowel. She said I should see Dr. Sharfman, a melanoma specialist at Hopkins. Yesterday the surgeon called and was discussing the scan results with me when she said the spot in my lung... What spot in my lung!?! Apparently my onc failed to mentioned there is a spot in my lower right lobe that just barely lit up, and could be nothing at all, or it could be something. I know my onc and the surgeon are very well respected doctors here, but I have really lost faith in them... Am I crazy? I feel like this could have been caught two months ago! And has anyone been treated by Dr. Sharfman? I know Hopkins has a strong melanoma program, and everything I have been able to research on him seems very positive.  Sorry for the long post, but I am really having a hard time believing my doctors now, and am wondering if I am justified. 

Eileen Sullivan

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rick1981's picture
Replies 9
Last reply 1/21/2015 - 8:36am

Hi all,

I posted this week about my wife's (new) brain mets after a double seizure this week. They came on the day of the 3rd Pembro infusion.

We had a feeling Pembro was working as my wife has been very ill in early December after her previous treatment failed (new mets on scan of December 3rd vs October 27th; LDH moving up from 400 in October to 1300+ in December) and she started feeling significantly better as of her 2nd infusion on Christmas Eve - she went from bed ridden to being full of energy. LDH also dropped back to 600. Seemed like Pembro worked right away, which was what our onc also though.

However, we just read the full blood analysis that was done on January 14th, the date of her 3rd infusion, so basically showing the impact of 2 Pembro treatments. LDH has shot back up to 1300. So in the accompanying letter it seems that our MD is now unsure if Pembro is actually working (the new brain mets may contribute this his thoughts - although they could have also arisen during the "free fall" period between treatments).

Any thoughts on this?

How can LDH drop so quickly, my wife feel so much better within 3-4 weeks of Pembro, continue to feel good at six weeks and then see blood values that indicate it may not be working after all?

Apart from scans, what are other ways to get an indication of PD1 is working? Any other blood values to track?

Thanks!

Rick

 

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chowmene's picture
Replies 2
Last reply 1/18/2015 - 5:12pm
Replies by: AnitaLoree, Anonymous

can a mole between shoulder blades push on nerves in neck, and make it feel like i'm might have an aneurism? just feels that way. curious tyvm. Mark. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/17/2015 - 5:41pm
Replies by: Maureen038

Hello all,

We had a biopsy procedure for my son to evaluate if the growth of the tumor is inflamation or tumor's growth. It is in pathology now.

Does anyone have an  experience with pathology confirmation for PD-1 response?

 

Thank you for the great support team,

Mom

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JoshF's picture
Replies 6
Last reply 1/18/2015 - 5:16pm

Anyone ever hear from Aldakota? He had the lepto issues going on and it's been a long time. He is always so strong and inspirational. He hasn't posted in long time...I hope all is well but I'm worried.

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

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