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
Replies 2
Last reply 3/24/2018 - 2:52pm
Replies by: Edwin, Bubbles

Hello,

I am looking for answer and to understand everything that is going on with my mom.

My mom was diagnosed with stage 4 rectal melanoma in June of 2017. She had a quick growing hemorrhoid. Once they removed it and found it cancerous she had a colostomy performed in July 2017. In August 2017, they found tumors on her liver and pelvic bone. She was put on Keytruda. The Keytruda did not work and was found to have more spots on her liver and lungs. During all of this my mom felt great and worked. She felt normal. In the beginning of Feb. 2018, she was put on Yervoy. Her first treatment was fine. After her second treatment, she felt very nausea with diarrhea and vomiting. Her second treatment was almost a month ago and she is still felling horrible. She was admitted to the hospital for a week to regain strength with IV and potassium. Once she got out she started to decline in strength again and sleeps 20+ hours a day and is totally out of it. She is on hydrocodone. When she does wake up she says she’s in pain and is nauseas. She went in for scans 2 days ago and it has shown the tumors have stopped growing but they have not decreased. The doctor says she should have 2 more treatments.

My questions are. Is this normal, my mom was full of energy off or Yervoy and is now in pain and sleeping all of the time? When she is awake she tells us things like "remember I will always be watching over you". Do you think she can pull out of this after the treatments are finished? It has me very worried. Thanks

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as I just found out BRAF 600e . At Stage 3b so an adjuvant therapy. The side effects of these two drugs seem really scary ! Anyone been on them ?

I had a selective neck dissection (unknown primary) 1 lymph node 3.2cm inner partly maliganant outer shell benign other 61 lymph negative. ENT surgeon (oncologists) very pleased said 70% to 80% no reoccurence next 5 years.

Melanoma specialist oncologists not on same page says 40% to 50%  for the next 5 years. The stats on this drug combo seem great but the potential side effects high.

If anyone has had this therapy stage 3 or 4 please let me know how it went.....thanks

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cheris's picture
Replies 3
Last reply 3/24/2018 - 1:51am
Replies by: Casitas1, Bubbles, Anonymous

Hi, all,

It has been exactly a year since my last Keytruda treatment, and I'm surprised that I still feel so tired and unenergetic.  What is more concerning is that I feel a tightness in my chest and feeling as if I'm not getting enough oxygen in my lungs  Anyone else a year out?

I also wanted to suggest Magnesium for those with muscle and joint pain.  t one point I was sent to a nerologist and he told me to take it since I had such pains. bBlessings.

Cheris

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I have been stage 3 for about 1 year, following removal of inguinal and pelvic nodes. Currently on Opdivo. Metastasis found this week in hilar (lung) node. Clear everywhere else. My MD Anderson oncologist has asked the thoracic team if this is operable. No answer yet. Another option she mentioned is radiation with continuation of Opdivo. Has anyone had a hilar node removed? Is it possible?Radiation to hilar node? Desperate for information about these
treatments, any successes, failures or advice. Please and thank you.

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/23/2018 - 3:23pm
Replies by: Bubbles, Anonymous

Hello:

After having a brain metastisis removed in January, the melanoma has returned to my dad's brain in the last few weeks. At this point, the suggested therapy by our main oncologist, neurosurgeons, and radiation oncologist is whole-brain radiation followed by temozolomide (Temodar). 

Another oncologist we've consulted with suggested bevacizumab (Avastin) instead of the whole-brain radiation in an effort to maintain his quality of life, which this doctor felt would be impacted by the whole-brain radiotherapy. 

Any opinions from the community on which way to proceed would be appreciated. 

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Hukill's picture
Replies 8
Last reply 3/23/2018 - 2:38pm

Last Friday I received the new 480mg dose of nivo. On Monday my dr called me to see how I was doing. They said they were checking on everyone who received the 480mg to check on them. I just got another call to check on me and was told they have had 2 patients admitted to the hospital for side effects after the 480 mg dose.

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NSNewf's picture
Replies 4
Last reply 3/23/2018 - 1:21pm
Replies by: Bubbles, bjeans, gopher38

I subscribe to a number of online medical journals. This just came in

 

http://www.cancernetwork.com/melanoma/adjuvant-immunotherapy-advanced-me...

 

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Tracyyy's picture
Replies 2
Last reply 3/23/2018 - 11:07am
Replies by: Tracyyy, Bubbles

Hi all! Just wanted to say that after all the struggles to find proper treatment in my country we managed to find a good trial here and mum finally started treatment today! She is in the triple combo Dab/Tram + PDR001 or Dab/Tram +placebo. We do not know what she is getting because it is double blinded but good thing is she is getting the BRAF inhibitors for sure. She is stage 3c unresectable. Hope she will get a durable response. Is anyone in the same trial? Best wishes to you all!

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melhoff13's picture
Replies 3
Last reply 3/22/2018 - 4:34pm
Replies by: melhoff13, Janner

Hello all.  New to the board and new to this diagnosis.  I am 36, light skinned and have had hundreds of moles/freckles all my life.  I have been seeing a dermatologist off and on for the last 10 years or so.  In that time span, I had 5 or 6 moles removed and biopsied with nothing to speak of.  Last week (3/15/2018) I had another mole removed from my chest, but this time it came back as melanoma I guess.  The doctor called yesterday (3/21/2018) and said it was caught early and the treatment is to make a deeper cut.  I am assuming this is the wide incision I have been reading about on this forum.  I haven't seen the pathology report so I don't know all the specifics, but I am going back in this morning (3/22/18) for the follow-up excision.  I am going to ask for a copy of the first report so I can post the details, but I just wanted to join the community and hope for the best.  I know many times these things are somewhat routine with moles and light skin, but I have been freaking out the last day or two.  I really wish I had the report or knew what the details were, but the doctor called when I was driving and I didn't get a chance to ask many questions.  Hopefully I can find out more today.  Any how, thanks for the forum and I look forward to interacting with everyone.  Cheers. 

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smiller's picture
Replies 3
Last reply 3/22/2018 - 2:46pm

  My husband just had his latest checkup after having to stop the Opdivo/Yervoy treatment.  He made it through three treatments and the side effects were just too hard on him--the last infusion was in June of 2017.  The tumors are still continuing to shrink to this day.....We feel incredibly blessed.  My heart aches when I read some of the postings here and I just wanted to throw out some good news for those of you who are having a difficult time.  A little hope can go a long way.

Thank you to all who have been such an encouragement to me. 

Bubbles (Celeste)---many many thanks to you for all you do!

Jim's wife

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mrsaxde's picture
Replies 14
Last reply 3/22/2018 - 12:23am

Hello Everybody,

There hasn't been anything going on with me lately, so I've not been around much. But last week I got the call from NIH that my cells are ready for transfer.

Dr. Shindorf told me that my melanin cells weren't "sticky" (her word) enough for them to do the newer protocol they had been looking at for me. But she said my cells grew well and are reactive, and so they are ready to do the bulk TIL transfer.

I go to NIH to be admitted on Monday evening (3/19). I'll get scans and have a tunneled catheter inserted, and then on Friday 3/23 I'll be starting the chemo preparatory routine. The cell infusion is scheduled for Friday 3/26.

I'll provide updates as things go if and when I feel well enough to do so.

-Bill

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Replies by: CancerSpouse, rosa1, Bubbles

I hope anybody who is in the path of the latest nor'easter is enjoying watching the snow as much as I am from my room at NIH. I know it's creating havoc on the roads but it's beautiful.

So the chemo starts on Friday afternoon, as long as my cells are confirmed to be ready when they do the final check. This morning I was presented with the latest bump in the road: I now have a brain met.

Fortunately one small brain met doesn't disqualify me from this trial. Drs. Shindorf and Yang explained to me this morning what was up. The met is about 3mm, on my cerebellum. Dr. Yang said that due to the nature of melanoma, sometimes brain mets respond to cell therapy. If it does not, he says it is in an area that would be easy to reach via surgery, or it could be treated with radiation, with what he said is about a 95% success rate. He did feel that surgery would be the better option if needed because it wouldn't leave behind any dead tissue.

So we're moving ahead, and we'll tackle that bump if and when we need to. Now back to watching the snow.

-Bill

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justscared's picture
Replies 10
Last reply 3/21/2018 - 7:53pm
Replies by: justscared, Janner, SABKLYN

I haven’t received any sort of diagnosis - in fact, can’t call til Monday to even try to find a dermatologist. But I’m terrified right now. 

I have a spot about midway down my ribcage on my left side. I don’t think it’s even 5mm. But it’s a little oval almost that’s single-color tan in the center and rimmed by reddish brown. What’s driving me crazy is that I can’t remember how long it’s been there. It’s always hidden by my bra. 

I’ve never really concentrated on it before. It’s ever so slightly raised, but maybe it’s always been? And maybe that reddish brown has always been there too. But I’ve convinced myself it’s melanoma because I was an idiot 10 years ago and used a tanning bed occasionally. I’m 32, fair skinned, blonde hair and blue eyes. Can’t get much more high-risk than that. 

I’ve had other people look at it that say it looks like I gouged myself with my nail. But I don’t recall doing that, and why would it be brown still? And this has been there for a few months, I know that at least. Doesn’t appear to be changing. The center color matches a few other tiny spots I have down my torso.

I just don’t know what to do right now and my anxiety is destroying my life. 

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NSNewf's picture
Replies 13
Last reply 3/21/2018 - 7:41pm
Replies by: NSNewf, Rob578, bjeans, Linda5, Anonymous, Bubbles

Stay informed and know your sources. 

https://rationalwiki.org/wiki/Joshua_Lee_Axe

 

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washoegal's picture
Replies 9
Last reply 3/21/2018 - 6:05pm

I am one of the "lucky" ones  with the BRAF mutation or so says my ONC.  Anyway my question for some of the more well studied in this group, if you have a gene mutation does that mean it effects you no matter you status (ie NED).  Specifically, is that Gene mutated within your body not just a Melanoma  Tumor?  What got me wondering was when my Onc suggested I have my regular cancer screenings Breast, Colon, etc more frequently.  Then I started reading the BRAF shows in Colon, non small lung, etc.  What I know about genes I can fill on about two lines.

Thanks,

Mary

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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