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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Lisa - Aust's picture
Replies 1
Last reply 9/5/2015 - 12:53am
Replies by: ET-SF

Hello Everyone, 

Just wondering what kind of side effects those who have stopped PD1 have experienced. 

My husband has been off treatment for a couple of months (after being on for around 1.5 years) and is experiencing 'tingling' of feet, hands and face - he describes it almost like his body is vibrating at times. While on treatment he also developed tinnitus, but the Drs and specialists are saying it's not related to the drug. Just curious if anyone has experienced similar sensations. He's just been checked out scan wise, and is all clear. 

Thanks

Lisa

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Skywalker's picture
Replies 2
Last reply 9/5/2015 - 12:06am
Replies by: kylez, MattF

I was diagnosed with MIS on the center of my nose and after my initial shock thought this would be straightforward: excision with some reconstruction. 

It turns out that an melanoma excision on the nose is challenging: Excision requires experience with the proper technique that not every dermatologist has and many plastic surgeons don't want to do any melanoma related reconstruction. 

I've figured out by now from multiple consults that I would need someone who's specialized in using Mohs for Melanoma, which is rare. Moh's surgery is used typically for other skin cancers, not melanoma. The type of Moh's is controversial too, with or without histochemical stain, etc. 

I need recommendations for a Moh's trained surgeon who is highly experienced in applying the technique for Melanoma; plus a plastic surgeon, plus a good oncologist - I actually have by now 3 primary cancers: breast, SCC, and melanoma and am told that that is not a good thing. Any recommendations are much appreciated. 

 

 

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Haven't seen her here for awhile.   Enjoy her posts!  Has anyone heard from her?  Is she doing ok?

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davidstewart's picture
Replies 7
Last reply 9/4/2015 - 9:31pm

Hi everyone!

I'm new to the forum. Really glad this resource is available. I caught a stage 4 melanoma diagnosis this Monday. We met with Dr. Stergios Moscos today at UNC Chapel Hill--very nice, informed melanoma specialist. He suggested a treatment plan but was supportive of our desire to get a second opinion.He offered six suggestions. I'd be grateful for any input that could help us decide about which choice to make for deciding about how to proceed.

Dr. Stephen Hodie at Dana Farber

Dr. Keith Flaherty at Mass General

Dr. Jedd Wolchok at Sloan Kettering

Dr. Jeffery Weber at Moffit

Dr. John Kirkwood (his mentor) at Pitt

Dr. Suzanne Topalian at Johns Hopkins.

We had been advised to seek out clinical trials as that is state of the art but Dr. Moscos took the view that some of the conventional treatments should be tried first.

Anybody out there have suggestions?

 

Thanks,

David Stewart

 

 

 

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arthurjedi007's picture
Replies 17
Last reply 9/4/2015 - 8:06pm

I see Dr Adi Diab this Friday at md anderson. From what I read he seems like he should be an ok doc and has lots of experience at Msk.

I was wondering if anyone knows what to expect there? I assume they'll have several systemic treatments in mind. I know they have the pd1 combo I almost started in Nashville and til of course plus who knows what else.

Im also wondering what if anything they do for specific tumors that are at the crossroads of becoming somewhat critical? For example I found out last week I have a baseball size tumor in each kidney but the blood work shows my kidneys are ok for now. That's really the main reason I switched to go here instead of Nashville. I know others are worse off and it may be selfish but I would like to keep my kidneys while there is the chance to do so. Surgery, internal radiation, embolism, ablation, external radiation are some of the things I'm aware that could be done. Here in saint Louis they don't want to do anything because the kidneys are functioning fine for now.

Also there's always the ever present need to keep an eye on my spine to make sure there's no narrowing of the spinal canal again. Also the keeping an eye on the 3cm ish tumor pressing on my brain.

So I dunno. We'll be staying at their hotel although they are doing renovations. I'm also getting mentally prepared to just rent a place there to stay long term. I also chose mda over Msk because the winter should be more mild than ny assuming I'm still plugging along then. I hope so. I have a new Star Wars movie to watch in December. But thoughts of Jerry Ellis sure bring it home that this disease can get even the smartest and toughest.

Artie

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Jackfish's picture
Replies 3
Last reply 9/4/2015 - 7:24pm

I had surgery to remove a Melanoma on the top of my head. It was 5.46MM deep with a Mitotic index of 12 and ulcerated. A SNB was performed at the time of surgery along with a skin graft. The biopsy results were negative for the SN and two additional lymph nodes in the neck. The deep  margin at excision and at periphary are negative for Melanoma. Due to depth of Melanoma and location the probability of recurrance is indicated high. I was recommended to have 5 Radiation treatments on area of excision and take the Interferon Alfa regimen. I am three weeks post surgery and trying to determine wether Rqdiation and Interferon should be taken. I go for a Pet scan of whole body today. I would appreciate any comments and input as I navigate how to move forward.

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Hi has any experience thyroid issues when had ippi. I have had my normal 3 month  bloods for vitamin D and thyroid but my GP called and said my thyroid was high. I said I have had treatment which could be a side effect so she going to send letter to my consultant to ask if I need to go on treatment or re do bloods in 3 months to see if resolves it self. Now I know why been tired more than usual. 

Scooby 

take care all ❤️

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jonathanmole's picture
Replies 2
Last reply 9/4/2015 - 5:53pm
Replies by: stars, Kim K

Hi! I just found this mole on my left leg, I was startled to see black dots in the mole itself and scheduled a meeting with a dermatologist, but sadly it's gonna be at least 3 weeks til I see him. I am so worried about what this might be. I just want to get some feedback on what to expect and what you might think this is. Thank you. 

http://i.imgur.com/1PpAna3.jpg

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SunshineMomof5's picture
Replies 12
Last reply 9/4/2015 - 11:21am

Hi, everyone!  I'm new here.  My husband has Stage 3C metastatic melanoma and just finished his 4 week course of 5 days a week IV interferon treatments.  Now we're on the 3 a week injections.

He's down to 126 pounds.  He's 6'1".  The nausea has been bad, but so has the metallic taste in his mouth which makes everything he eats taste horrible and creates more nausea.

Any tips or tricks from those who have travelled this road before us?

Thanks in advance!

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Anonymous's picture
Replies 10
Last reply 9/4/2015 - 9:26am
Replies by: Anonymous, amelanomajourney, DZnDef, Richard_K, stars, Want2help, ldub

Recently diagnosed as stage 2a.  Dermatologist recommended I use a sunscreen every day on hands and face.  Anyone have a recommendation for something tolerable - light and easy to use, not heavy, tacky or greasy?  Thanks!

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hope4ned's picture
Replies 6
Last reply 9/3/2015 - 8:52pm

Am confused about melanoma surgical oncologist's recommenation about whether or not to do SNB on LO (over 70).  Tumor is at least 6mm, report says "ulcertaion not seen" but doctor thought it looked ulcerated (of course, this was after the shave biopsy), and mitotic rate is 6.  No evidence of disease in external examination of lymph nodes at all. 

Specialist agrees that tumor should be removed.  Less convinced SNB is the way to go because it provides no clinical benefit except having the patient "know" whether disease has traveled microscopically to the lymph nodes.  Would not provide info if in blood stream. 

Asking LO to do PET scan.  Says if PET scan comes back positive for spread then would not do SNB (would dissect infected nodes instead).  If PET scan comes back clean, proposes no SNB and watch and wait given LO's age.  Says would provide different advice if patient was in 40s.  Says would be very against SNB if patient in 90's but if it were him he would not have it at LO's age.  However, would do it if LO wanted.  LO heavily  leaning against based on rec and because generally surgery adverse (concerned re infection and unforseen complications).  Also has basil cell issue behind ear but doctor says that is less urgent .Says LO would qualify for interferon without snb based on tumor thickness but says wouldn't recommend interferon given LO's age.

This is the first time I have heard of such a recommendation at this tumor thickness and doctor is from respected melanoma practice.  Am confused and concerned about recommendation.  Does it seem reasonable?    

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Aundrea's picture
Replies 9
Last reply 9/3/2015 - 4:58pm

For those who have took Yervoy.  I have a few questions and I know eveyone is different.  My husband is 34 yrs old.  He have taken 3 rounds of Yervoy so far and had brain radioation twice.  He gets his last round of yervoy this coming tuesday.  Until this past sunday, he has not had any major symptoms, he has still been able to work 20-50 hours a week depending on how fatigue he is.  Sunday he started having right side abdominal pains, they come and go.  No diarhea, no fever etc.  Just real tired and abdominal pains.  This morning he felt like he was going to pass out when he first woke up and went to the restroom.  He is drinking plenty of fluids and eating so-so.  He is on megase or marinol for appitite, he has both.  I read about the colitis and liver side effects and it makes me wonder if its something like that causing the pains.  He has been a bit gassy too.  I called his melanoma oncologist and he felt it was just normal side effects and he would be ok and he will see us next tuesday.  If he does have inflammation of organs, it will pick it up on the blood work right?  Did yall experience abdominal pains on yervoy and were able to complete all 4 doses?

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SarahA's picture
Replies 6
Last reply 9/3/2015 - 11:03am

Smoking pot to treat cancer treatmenet side-effects is as old as 28 years ago when I smoked it w/my mom when she had ovarian cancer. But now there is all this talk about cannabus in different forms to FIGHT cancer - to fight the tumors. Hemp oil, CBD or THC, brownies, Charlotte's Web, balm, capsules, cannabinoids--HELP!!! I went on Amazon and some prices ranged from $65 to $650. Where do I start, what do I buy...

Can you please share your successes and failures with me?

 My son has been in the hospital (ER Sat. night - lost strength in right leg,(again) but this time he couldn't walk, and then pretty fast cognitive decline right after, so they had to increase amount of steroids. Each time he has had the brain mets swelling and thhese sroke-like side-effects and then goes on the steroids he gets better, but each time a little less better. He's far from normal now, so I;m wondering how much steroids can you take and for how long until they just don't work anymore and will it be before the tumors respond to the Ketruda infusions - if and when they do?

Thank you all in advance, now I gotta go to bed.Batteries dying and Dr making rounds in 3=4 hours, I'll check in tomorrow.

Sending best wishes to allof you,

SarahA

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affguy's picture
Replies 11
Last reply 9/3/2015 - 9:27am

We held my Dad as he took the last steps in his battle with melanoma last Thursday at his home.  I haven't posted much on here, but I've read and learned a ton, lurking on a near daily basis during the most stressful parts of this journey and weekly during the longer periods of "no changes to report."  Without fail, this site has been a great source of knowledge, inspiration, and comfort.  In the obituary, we requested that donations be made to MRF in lieue of flowers.  Thank you all, and best wishes with your battles, which I hope have better outcomes than my Dad's.

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