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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Hukill's picture
Replies 5
Last reply 6/27/2019 - 6:57pm

Lots of people have been commenting about being fatigued while on ipi/nivo. My question is if you are suffering fatigue from these meds has your thyroid been affected also and are you on hormones?

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KAP715's picture
Replies 2
Last reply 6/28/2019 - 6:21pm
Replies by: MelMel, WithinMySkin

Started pembro 3 weeks ago. I went in yesterday for round 2 but liver enzymes were too high. I was but on high dose prednisone for a month with weekly blood tests. My doc says liver problems usually take a few months to show up if they're going to happen. I've also been told it's a good sign that the pembro is stimulating my immune system. Anybody have a similar situation? Were you able to restart immunotherapy? How effective was it on your melanoma?

Diagnosed stage 2 Oct 2014. Stage 3b May 2019.

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/15/2019 - 12:11pm

Hi! I am 27 and I was diagnosed with melanoma at the beginning of this month. It was located on my lower back with a thickness of 0.3mm. I had a WLE two weeks ago and actually go to have my stitches removed tomorrow. While I know I am so lucky they caught this early, I can’t help but worry they’re missing something or there’s a chance the primary they found is actually in my lymph nodes.

I’m trying to stay positive, because I have read so many success stories of the newest options for treatments and it seems promising if I were to get a further staged diagnoses.

I mentioned to my dermatologist (who specializes in Mohs surgery and skin cancer) that I was concerned I should have a lymph node biopsy done. He said he didn’t feel that was necessary on a lesion this small. While I’m sure he knows what he’s doing, I can’t help but worry that the melanoma has spread.

My boyfriend thinks I’m absolutely bananas because in his head he thinks “they cut it out of you. It’s gone. It’s done. Move on.” And I wish that I could, but I am so anxious and cannot stop googling.

I’ll try to get some info like the miotic rate and if there was ulceration at my follow-up tomorrow. I do know it was classified as Clark Level 3. I’ve read things that say Clark level doesn’t matter...I’ve researched so much I don’t even know what to believe at this point.

My main concern is am I crazy for wanting a SLNB done with a melanoma so thin? I think I’m probably being paranoid, but every little abnormal blemish I see I take a picture of. Is this much anxiety normal? If you have ANY advice on how to stay calm/not panic with life after (or with!) melanoma, I am more than happy to hear it!

-Amber

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chrispl1974's picture
Replies 1
Last reply 6/28/2019 - 8:50am
Replies by: swalters1038

Hello fellow Melanoma fighters.

I am in my 6th month of adjunvant treatment and every 6 weeks I get for approx. 4-5 days high fever, headaches and my joints hurt and a sore stomach.

Right now I am experiencing one of those episodes and when it gets too rough, I tend to tak IBUPROFEN 600 to ease the discomfort.

Anyone experiencing these side effects as well and if so, what do you normally take to ease the pain ?

Thank

Chris


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rg1981's picture
Replies 3
Last reply 6/27/2019 - 4:29pm

Hi, All.

Have written a couple of times but just in case here is my short story. December 2015 – first diagnosis of orbital melanoma, almost two years of NIVO, then progression and eye exenteration in October 2017. Since then everything was fine until Aril 2019 when I suffered a stroke. The following MRI showed two new tumors in brain and my Onc. prescribed NIVO+IPI. However it is not the biggest issue now.

While recovering after the stroke I have noticed that my legs have been becoming weaker from day to day and now I can barely move my legs. Firstly it was supposed to be a therapy side effect, but yesterday to MRI showed one lesion somewhere in the middle of spine. I’ve seen a lot of stories here about spinal metastasis but would like to see more fresh stories. Are there any possible outcomes? In forthcoming dates I will be discussing this issue with my DermOnc, nuclear surgeon and neurosurgeon.

Thanks a lot in advance and best regards

Andrey

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hopefuldaughter's picture
Replies 2
Last reply 7/10/2019 - 1:23am

In July 2017 my dad was diagnosed with stage 3c melanoma. He had an 8mm ulcerated tumor on head and 4mm in one lymph node (didn't do complete dissections.) In September he went on one year of Opdivo. He had a rash, fatigue joint pains and was slightly anemic but otherwise tolerated everything well.. A few months after his final opdivo around December/January he discovered blood in the stool and was hospitalized with severe anemia and received a blood transfusion. They did an endoscopy, colonoscopy and pill camera. They didn't find any tumors but two small benign non-bleeding ulcers in the stomach and hemorrhoids. The bleeding in the stool continued and he continued getting iron infusions and blood transfusions every two weeks (has had about ten of each now.) In April they did a hemorhoidectomy (also negative test for malignancy), which reduced the pain of the hemorrhoid, but two months later he is still has blood in the stool and needs the blood/iron transfusions. We are not sure if the hemorrhoid isn't healing or if there is some other problem in the GI track. Earlier this week they did a GI scan (nuclear test where red blood cells are tagged and photographed.) but the result came back as not showing any internal bleeding over a two hour period.

I was wondering if anyone else had a similar experience? And if so, what did you do? I haven't really come across hemorrhoids or stomach ulcers as symptom of opdivo although see a lot on colitis (which the doctors say he doesn't have.)

Thank you

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Carlsbad317's picture
Replies 1
Last reply 6/29/2019 - 8:44pm
Replies by: Bubbles

A Verizon commercial has intrigued my dad. It is the one where they use two phones for some 3D technology and laser the hell out of the tumor. The tumor is located in the right auxiliary and is intertwined with tissues, and nerves. The original general surgeon mention when he took out a wedge that if he would have taken anymore it would have caused permanent damage.
Since he is finishing up radiation he wants to try the laser. Please share any info you may have of first or second hand knowledge - location does not matter he is ready to go-
Not really- too sick now, but when he is well enough.

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casagrayson's picture
Replies 1
Last reply 6/25/2019 - 9:11pm
Replies by: KellyH

Has anyone had an update from Kerri about Jake?

Strength and Courage,

Susan

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Sdmotorcop's picture
Replies 7
Last reply 6/30/2019 - 8:44pm

Hello All,
I had a run in with melanoma in 2004 (1.7mm, low back, WLE, snl nodes x3 negative). I did the dermatologist checks every 6 months for 5 years with no recurrence. I’m light skinned and surfed a lot when I was a teenager in the late 70’s (zinc oxide on the nose was the extent of my sunscreen... if had known then what I know now..). I have had 10 basel cells and 3 squamous cells removed along with a melanoma in situ in 2017. Needless to say the wife and I were very vigilant over the years watching my skin.

This brings me up to February of this year. I noticed a small spot behind my left knee. Both the wife and I thought it was a blood vessel that had pushed to the surface (I had a bad MC crash and pretty much destroyed my left leg leaving me with some vascular damage.. hence thinking it was a blood vessel or varicose vein). It did not look like a melanoma at all. I went to the dermatologist approximately 54 days after I noticed the spot. The dermatologist said it looked like a granuloma and not to worry to much. We received the results of the biopsy in 3 days.. the following words. “Are you sitting down” were uttered and I knew it was ugly. Turns out it was a 4.3 mm nodular that had ulcerated. It took 54 days to go from nothing to something.
I had the WLE on the back of my knee which was closed to the size of a silver dollar. Had three snl nodes marked but could only get to two. The first one in my upper thigh was full to the brim (7.3mm with no extranodal extension). The second node was completely clear. The tumor was braf and Pd-L1 negative. PET scan was negative for any hot spots. Doc has me listed as a stage 3C. He started me on monthly Opdivo for the next year. My first dose was on June 2nd with my next dose is next week. First set of labs is this Saturday. It’ll be interesting to see how my body is handling this medicine.

Side effect questions
The first issue is feeling like I’ve run a marathon... every day.. I was told that fatigue was to be expected.. but geez.. does the fatigue let up at some point?
The second side effect is my shoulders and upper arms are painful as all heck in the evenings and mornings. Does anyone have insight as to what’s going on with that..

The wife and family are very supportive which is nice. I have been reading through posts and am encouraged by the strength and resilience of the folks on this site.

Fight the good fight!

Bruce

Bruce

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Happygal's picture
Replies 3
Last reply 6/25/2019 - 7:47pm
Replies by: Edwin, Happygal, Bubbles

Well,
I made it through my WBRT. They even gave me the mask!
I am just beginning to lose my hair, not looking forward to this part.
Now I just am in the wait and see mode. No more medication available. I know God can work miracles, but
I have some issues I don't know who to talk to, not sure where to turn.
How do you reconcile who you are now, compared to who you were before.?
My whole persona has changed. I don't know this person yet. I don't know how to do this. It has become so very real and scary and I feel lost.

Tyais

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Anonymous's picture
Anonymous
Replies 10
Last reply 6/26/2019 - 1:50pm

Hi all. I am new to the group. Thanks so much for being here

I was dx with early stage melanoma in May. By way of background I have had early stage breast cancer 11 ago and early stage thyroid cancer 5 years ago and consider myself really fortunate and really healthy I have 2 kids and a full-time career

I have been going to my dermatologist every 6 months for almost 20 years. Lots of moles removed and in all that time I had 1 basal

I noticed a light colored mole on my arm and brought it to his attention. Turned out to be stage 0 or 1 melanoma. Then I had my regular skin check and he biopsies another mole in my trunk. Not melanoma but they want to do a wider excision this week. And finally I see an unusual shaped mole on my neck that I am now anxious about. Sent him a picture and will follow up this week.

My Derm is great but I am starting to wonder if I should be working with a group like Dana Farber since my risk factors are high. What would you all recommend?

Momand2kids

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adriana cooper's picture
Replies 5
Last reply 7/6/2019 - 1:29am

Any news on trials using Intrathecal anti-pd1 for LMD? Are we making any progress.

Thanks. Rob

Adriana

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Replies by: lkb, KAP715, MelMel

Though I have put it off, I have embarked on my now annual review of ASCO reports. They are the most important solely per my perspective, reference links to prior reports and background info when I have it, and include 'my take' (in red) as is my usual. The first post is up and covers the fairly limited "NEW" stuff that came out in this year's meeting. Specifically, it addresses currently recruiting trials offering NKTR-214 with nivo, IMO-2125 (a TLR agonist) with ipi, TIM-3, lifileucel used in TIL, and a biotherapeutic agent, taken orally with pembro. Three reports address the microbiome craze, including that last as well as flora in mice and antibiotic use in real live ratties.

Here's the link if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-s...

More reports on other topics to come in the next several days. Remember, despite the storm ~ there is beauty still. Wishing you all my best. Celeste

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MelanomaMike's picture
Replies 3
Last reply 6/24/2019 - 3:23pm
Replies by: jbronicki, MelMel, Cgrissy29

Hi guys, happy Sunday to you all, next week is a busy one, Monday is Opdivo #19 , Tuesday my "head" doc, and Friday is my colon and Endoscopy. Then, July 9thbis my CT Guided biopsy to my right butt cheek, something lit up there so, gotta do some "mining" on that then! July 11th im gettin that Mel Monster out of my left side of my stomach, its gotta go, its like my lil conjoined Twin thats pestering me haha...
Anyways, trying my best to keep one foot in front of the other, sometimes it gets to be to much but, after a nights sleep, its usualy subsides....take care, love you all.

Im Melanoma and my host is Mike..

www.covvha.net

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