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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guynamedbilly's picture
Replies 9
Last reply 10/31/2017 - 3:54pm

I had a melanoma about as thick as primaries come, more than 15mm, taken out in July and one positive node.  Started Nivolumab right away and just had my first followup scan today.  Nothing new so far.  Nivo has worked great for me, with very few side effects.

 

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Bubbles's picture
Replies 3
Last reply 10/31/2017 - 2:09pm

Both aspects to immunotherapy.....side effects and how they impact response....especially if treated with immunosuppressive drugs (prednisone, etc.)...are central to many of the questions I am sent by melanoma peeps and their families.  Today, I put up this post that covers a lot of ground...but begins to pick out the answers:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/do-melanoma-peeps-with-side-effects-to.html

I have done my best to decipher the data accurately and concisely.  But more importantly, as I conclude in the piece:

YES!!!  You CAN and SHOULD treat side effects to immunotherapy with prednisone if needed.

And.... "As ever, ain't noth'n simple in melanoma!  Hang in there ratties!!!" - celeste

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/31/2017 - 11:54am
Replies by: Anonymous, KMick, MichelleRHG

I have had a growth for a few months get large somewhat quick. Started small and over 4 months got larger,  I whacked it playing a sport filled with dark bloodlike liquid, and clear fluid came out. Had it removed waiting for biopsy.  Derm did not seem to concerned, thought it was irritated cherry mole. however the quick growth and clear fluid were concerning, and I've read people are diagnosed without concern from doctor/derm. Anyone have experience with amelanotic nodular melanoma? Waiting for biopsy is steasful

 

Phtotos attached one is with dark liquid.. one is prior to biopsy after it broke.

https://ibb.co/kdsBT6
https://ibb.co/keL9Fm

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Anonymous's picture
Anonymous
Replies 0

My husband has acral melanoma of toe nail that spread to pelvic and groin lymph nodes. Now with possible mets in the pancreas, liver, and spine. The pain in his abdomen has been intense especially when he eats or tries to eat.

He is getting relief with George's Aloe Vera drink. He still has the back pain, but the burping and stomach pain that radiated up into the chest and around to the back is gone. He drinks it prior to eating or when the burping returns.

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/30/2017 - 5:12pm

I posted my concerns under the Subungual melanoma topic (including pictures). I was amazingly able to get in to see a dermatologist today in one of the Kaiser offices in Colorado. I had previously sent a picture of the stripe in my nail along with information that I had lost the nail as a child. When the derm came into the room and introduced himself he said I saw the picture and I think I have good news. He examined my nail with the naked eye, then using a small handheld magnifying glass and then using some head apparatus. It was all very quick so after stressing all day yesterday about it, I was kind of in shock when he said that all I had was benign Melanonychia. He stated it was negative for Hutchinson’s even though in the pictures the steak appears to run the length of the nail. He also measured the top and bottom and said they were symmetrical. I asked him about a biopsy and he said it wasn’t indicated. Again it was all rather quick so I left feeling a bit unsure. Would you recommend a second opinion or trust this doctor without a biopsy? I have no family history of melanoma. Still stressing about this so looking for feedback either way. Thank you!

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/30/2017 - 4:39pm
Replies by: mrhudgens, Anonymous

Do all melanomas change over time or can they just appear and then not change for many months or years meaning you could not detect any visual change or change in feel? If a mole is suspicious but remains the same can it still be melanoma.

Thank you for your answers.

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Hello, did anyone heard about this device that detects melanoma?

It would be nice if it is accurate! Does any expert has some more information about it?

 

Best!

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Sharon93065's picture
Replies 3
Last reply 10/30/2017 - 10:13am

""Those with thyroid issues and who take Synthroid should avoid soy and soybean products, according to the U.S. Army Medical Department. Soy foods are goitrogenic, meaning they suppress thyroid hormones. If you are using Synthroid it is important to remember that soy can affect its absorption." Aslo high fiber, llike the unsalted walnuts, and almonds, I've been snaking on.  Oh great!!

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jagstter's picture
Replies 4
Last reply 10/30/2017 - 9:58am
Replies by: jagstter, TexMelanomex

I took the advice of my GP & decided to get a 2nd opinion from a local oncologist re: the numerous bilateral pulmonary nodules that showed up on my most recent CT scans @ MDA in July. I met w/ him last Friday & he was wonderful! Though not a melanoma oncologist (hematology) he completely agreed a 12 week interval scan was absolutely warranted. MDA has me scheduled for mid-December & it just seemed too long, especially since I've been feeling poorly now for a few months.

So as a result, I'll have a PET/CT, tomorrow. Yes, I am a little anxious, especially since all my pre-July lung scans had been clear ... but being proactive definitely helps me feel like I'm not just a number in the system, waiting for the wheel to turn. Also, I know the resolution won't be quite as good as Full Body CT w/ Contrast but if there are metastases, hopefully we'll see metabolic uptake & I'll be in a better position to insist upon treatment @ MDA, asap!

Separately, I do have a 4 centimeter tumor in my kidney, which has been growing intervallically since the spring. Urologist was supposed to assess for biopsy / surgery, next month. If my lungs are clear, I'll have to set sights on the next target. If not, maybe immunotherapy, for both? Fun, fun, fun!

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seathingchild's picture
Replies 4
Last reply 10/28/2017 - 10:20pm

I have had a recurrence of melanoma on the back of my leg just above the heel. Its insitu, which is good, but will need to be excised, which sucks. Because my surgeon will be taking a wider margin i will have to have a skin graft. He said I'll be off work for a month and not allowed out of bed except for the bathroom two weeks. Silly question, but how do you keep your leg elevated but not put pressure on the skin graft when your skin graft is just above your heel? Having trouble picturing it.

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Lucas's picture
Replies 2
Last reply 10/28/2017 - 7:29pm
Replies by: Lucas, Bubbles

After my 5th keytruda infusion I became very sick and it ended up that I had developed type 1 diabetes. Ive been told by my oncologist that this is a good response. But because its such a rare side effect, i was curious if anyone had any information or a similar response.

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stacijane's picture
Replies 5
Last reply 10/28/2017 - 7:11pm

I have my first Keytruda infusion tomorrow afternoon. I'm a little nervous, but optimistic. I'm hoping I'm one of the lucky ones with no major side effects, but I'll be working from home Friday just in case. I'll also be getting TVEC injections, not sure exactly when yet. Still waiting for insurance approval on that.

Time to kick the beast to the curb!

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Anonymous's picture
Anonymous
Replies 12
Last reply 10/28/2017 - 5:31pm

Currently I am facing the following decision: lymph node surgery risking lifelong lymphedema or injection of much less  invasive TVEC vaccine directly into the lymph node .If it's not working, surgery.Has anyone done TVEC as a mono treatment for positive lymph node and did it work for you?Any feedback would be appreciated, thanks a lot.

T.Chasse

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TexMelanomex's picture
Replies 10
Last reply 10/28/2017 - 1:25am

Hey Warriors, I hope you are all enjoying your weekend and relaxing! I wanted to post a few very minor SEs I've noticed since my first infusion of Keytruda on Tuesday (for informational purposes only, not griping :)

1) Minor flu-like symptoms and fatigue (not enough to keep me home from work or being able to do all my normal things), this lasted only 48 hours and resolved by Thursday night.

2) Sunlight sensitivity. This could be from the PV-10 so I can't blame the Keytruda but this has consisted of my exposed skin turning light red and itching like crazy even after brief exposure to sunlight (i.e., the side of my face after driving for 10 minutes). I don't know if this has improved since I have made sure to cover up even more since this started happening. I can say there have been no rashes or itching since the first 48 hours and benadryl topical cream was very effective.

3) Night sweats and getting up to pee at night. These are new developments but tolerable...I suppose its better to wake up to pee a few times vs not waking up and peeing the bed! The night sweats don't wake me up, but when I do wake up in the morning, the pillow and sheets are soaked.

Overall, I consider these things pretty minor and they are pretty easy to adjust to.

Rock on Warriors!

Tex

 

Tex

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