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.

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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 0

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 5
Last reply 6/25/2019 - 10:22pm

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 9
Last reply 6/25/2019 - 3:59pm

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 1
Last reply 6/24/2019 - 4:25pm
Replies by: Bubbles

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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kareylou's picture
Replies 5
Last reply 6/24/2019 - 7:34pm
Replies by: Debbiemartis, kareylou, kst

I have been newly diagnosed with melanoma. I had a spot check in May where the nurse practitioner took a biopsy of a suspicious mole. It was found to be melanoma (1.2mm). Surgery and sentinel node biopsy was scheduled for next week. Since they hadn't done a full body scan, the dermatologist scheduled me for that . At that appointment, they found 2 other spots on the same arm that turned out to be melanoma as well (.3mm & .7mm). I haven't found any information from anyone who has had this occur. The two sites are quite close to one another and the third is about 6 inches from them. The surgeon (who hasn't seen the location of the two additional spots) has agreed to at least remove the one closer to the original one and do another sentinel node biopsy. I am hoping she will also agree to do the wide excision surgery on the third (due to a snafu, she thought the third was on my back).

Has anyone had more than one wide excision surgery at once? I know the surgeon cannot remove the original one as planned since the newly diagnosed (.7mm) one falls right outside the 2 cm margin she was going to make. Do I assume she will probably take both with large margin that may require a skin graft?? I am praying hard they won't find cancer in the nodes as I am terrified of removing all my lymph nodes. Trying not to get ahead of myself. Thanks for any information anyone may have.

Karen

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NewEra's picture
Replies 1
Last reply 6/21/2019 - 5:31pm
Replies by: Edwin

Hi there!

Sorry to post before I have true confirmation of recurrence, but I'm curious about other's experiences with lymph nodes. Here's my story:

9/2017: Mole removed on rt. thigh and left upper arm biopsies as 1B and 1A respectively. Wide excisions on both, with sentinel node biopsy from rt groin shown as negative. I had some lymph edema to deal with, but otherwise no elongated side effects. No additional treatment was recommended.

21 months later, (2 weeks ago today) I detected sensitivity in my rt groin and found that a lymph node directly under the incision site of the sentinel node was palpable and tender. Next day I had a sonogram and CT scan of the leg and a chest XRay. CT scan showed inflammation in the lymph, but XRay show an incidental finding of a 1.7 cm nodule in the rt. lung. (X-ray from 11 mons before showed no nodule). Chest CT showed the mass was solid; PET had lung and groin lit up. Biopsy scheduled for next week.

Here's the thing: PET was Monday. Weds evening I rolled over in bed and felt something tender on my rt. ribs. Found another lymph node had flared out of nowhere. Same thing that happened with the one in my groin. there was NOTHING 2 days before - no tenderness, no lump - and the reason I know (don't laugh, ladies!) is because I did the "Big Shave" on Weds, and this sucker started hurting Friday afternoon - after I had spent most of my telework day in the lotus position trying to loosen up my hips. I know there was nothing on my ribs because (again, ladies, try not to snigger!) the sucker is right on my bra line and is damned annoying! Wasn't there in the am, wasn't there when got changed for bed and set my double-Ds free. Next day wearing a bra was agony!

Lymph on my rib did NOT flair on the PET, so that's the mystery - what the heck could flare up that quickly?

So - do lymphs flare that quickly from melanoma? Or is it possible there is something ELSE going on? Pulmonologist appt yesterday - 12 hours after rib lymph showed up. Dr. confirmed palpation. Dr. says there are benign nodules that flare up on a PET, so I'm hoping that it is a melanoma false alarm, but why haven't they put me on an antibiotic?

Will keep you posted either way on the biopsy results....

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Edwin's picture
Replies 7
Last reply 6/23/2019 - 2:17pm

Runners World article:
https://www.runnersworld.com/runners-stories/a28071717/kristina-baum-run...

I ran 10 miles this morning. Like Kristina I have stage 4 melanoma and receive Opdivo immunotherapy.

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On Tuesday my husband received a call that his biopsy came back as Melanoma. That evening my husband went up to the office to have his stitches removed and the P.A. gave him his pathology report. She didn't say much to him besides don't google and freak yourself out. She told him it was the beginning stages, not very deep, probably superficial spreading Melanoma. We have been referred to a plastic surgeon for a wide local excision and sentinel node biopsy. My husband's consultation appointment is Monday. In the meantime I've been trying to wrap my head around all of this and gain as much information to prepare myself for whatever lies ahead. In my opinion the pathology report seems very vague and I am confused if the margins on the biopsy were clear. I'm not too certain on what I am supposed to. Is it normal for a us to be referred to a plastic surgeon? Do I find an oncologist as well? I will post the biopsy report and any information or help will be greatly appreciated. I don't know if I am overreacting but I am terrified. My husband is 33.

R. Inferior medial midback, biopsy by punch method

Melanoma, spindle cell type, coming to within 0.5mm of the biopsy margin arising in Melanoma in Situ, Involving the biopsy side margin
Breslow depth: 0.64
Clark level: 4
Mitotic rate: approximately 1 per mm squared
ulceration: not identified
tumor infiltrating lymphocytes: not identified
microsatellitosis: not identified
lymphovascular invasion: not identified
perineural invasion: not identified
regression: not identified
macroscopic satellite nodules: not identified
pathologic stage: pt1b, nx,mx

Microscopic description:

There is a population of atypical spindled melanocytes in the dermis. An epidermal proliferation of melanocytes is also present with pagetoid spread. The biopsy margins are free. Intradepartmental consultation was obtained.

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AndyZ's picture
Replies 2
Last reply 6/21/2019 - 6:54pm
Replies by: AndyZ, Bubbles

My father has had mets in lungs and brain (in both sites very small, less than 2mm size). Dealt with mekinist and tafinlar combo and cyber knife. After some NED period he was unable to walk -without any pain. After some tests (Ct scans, MRi, bone morrow biopsy, ultrasound, etc) the doctors believe that a few cancerous cells are present in the fluid in the lower spinal cord. (not yet a definite answer-waiting for the biopsy report). Have you had any similar experience? any advice on what to expect? Is there any hope

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