MPIP: Melanoma Patients Information Page

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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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worriedwendi's picture
Replies 1
Last reply 12/27/2019 - 2:11pm
Replies by: Bubbles

Hey all. Back in March I had a mole removed that was severely atypical with high melanoma potential, and it was a compound nevus.

About 7 weeks ago I got a lumbar puncture for unrelated reasons. I got my results and it basically said I had 0 lymphocytes and my LDH was 272 with the normal results being between 119-226.

Could these numbers be cause for concern? My dr didn't mention anything about them...but it was a neurologist who was testing me for MS (which I ended up not having).

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Polymath's picture
Replies 5
Last reply 1/4/2020 - 3:54pm

Seasons greetings to all you!

This is anniversary time for me, and I'm way overdue to check in.

For some reason, Christmas always brings some kind of event for me, and back in 2012 it was a melanoma diagnosis.
It's now been three years since my final December 2016 surgery removing a 14cm tumor that engulfed my spleen.
Mine was a stubborn case, and I progressed through every drug therapy, mixed with multiple surgeries and radiation treatments.

In what has been a surprise to everyone, I have remained stable, totally drug-free, ever since the splenectomy and am down to annual scans now (next month)
and only quarterly visits to my onc. Besides several lasting side effects from treatment, I appear normal and healthy now. A miracle indeed.

I owe so much to the people on this board. It was because of what I learned here, that lead me to the specialist that ultimately
saved my life. I wake up each day now in new appreciation of a sunrise. After some devastating losses of people here
I felt so close to, it has been tough to check in often, and I even feel a bit guilty sometimes as I wonder why me, why am I still here
when such beautiful people have succumbed to the beast?

To be truthful, I mostly want to forget. There was so much pain, in so many ways. I'll continue check into the board from time to time.
In the meantime I remain so thankful, and hopeful, that each and every one of you find a way back to health.

Don't lose hope, I am proof that against all odds, you can survive, and thrive. Best wishes to everyone in 2020 and may you all win the fight.
.

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TexMelanomex's picture
Replies 6
Last reply 1/11/2020 - 11:47pm

Hello Warriors!

As always I hope this finds you all fighting and winning. It has again been several months since I've been here and almost like a guilt alarm clock, the MRF forum popped into my mind and reminded me that I have been absent. I have found myself very busy over the past few months traveling, working, taking a few hunting trips and I'm excited to tell you all that I have embarked on writing a book about my journey from stage II to stage IV and then NED. It should be published this summer and I'm excited to discuss my strategies and mindset during this battle, things I learned, and of course the support that so many of you here gave me. I have some scans coming up at the end of next month and I'll report back then if not sooner. Approaching 2 years NED quickly and I am so very grateful for all of you, and cant wait until the day when we wipe the enemy off the face of the planet and no longer need a forum like this.

I hope all of you that celebrate Christmas had a very Merry Christmas! I wish you all a great 2020 and much success in this fight. Please stay in the fight!

Warrior On!!

Tex

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Lucygoose's picture
Replies 4
Last reply 12/28/2019 - 10:40pm
Replies by: lkb, Affected, doragsda, Linny

I have a question about scans.

i was diagnosed 3B primary unknown in Feb 2019. I had combination therapy with Yervoy and pepinemab (investigational checkpoint inhibitor) before modified neck dissection surgery. I had complete pathological response, am being treated with Opdivo. I’ve had 2 clean PET/MRIs . I feel very blessed and am grateful.

my next scan is in February 2020. They are doing a CT without and with contrast but no MRI. They only explanation I receive was basically this is what they do. I am more concerned about the lack of MRI given my positive lymph nodes were in my neck.

What do do you think about no MRI after 2 clean scans?

Lucy

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carrotland's picture
Replies 6
Last reply 12/29/2019 - 4:15pm

I feel like I am going to have a panic attack, as I just realised one of my moles has changed dramatically.

I have had 4 basal cell carcinomas, since I was 30.
Fair skin, freckles, and grew up in Australia so lots of sun exposure as a child.
I live in the UK, and was under yearly review with Dermatology, but they knocked me off after not having anything pop up in the last 2 years.
Last time i went however, I complained about a mole in the middle of my back, which is lighter brown, with a raised bit in the middle, as sometimes I feel an itch on my back and when I go to itch it, fell that it is that spot which is the itch.
She looked at it and said it was fine- that it can be normal for a mole to have a raised bit and its fine.
Last night i was cleaning up the dinner table and felt like a pin prick irritation as my top moved over the mole, so I put my hand on my back and that raised bit feels much bigger all of a sudden!
My husband took a photo and the whole thing looks redder, with a light pin area around it and the raised part certainly is bigger now and has a slightly abraised area, that was oozing clear liquid, like the skin had been broken.
I have not been scratching it though.
Straight away, panic has set in, as I know its not a BCC like before and there is no good reason for a mole to change.
It is christmas and I am in Scotland (live in Wales) and don't get back until the 2nd, then if i get a doctors appt, I will have to wait for that and then wait for a referal to dermatology which might take ages, and I am panicking incase it is something dodgy!
It has certainly enlarged quickly , or I would have noticed it before.
The UK doctors are not that great with picking up dodgy patches either...I went to the doctors with my first BCC, and got told off for wasting doctors time when "there are real sick people that need an appointment" so had to wait to go to australia for a holiday to get it looked at a a skin cancer clinic there,and the guy knew what it was just by looking even before the pathology came back.

I assume this mole on my back is a dysplastic nevi with a fried egg centre...can these get a bit funny sometimes without being something really scary?
I am trying to forget about it so the kids can have a good christmas, but inside feel on the verge of having a panic attack fearing the worst.
If i am away from home, should I go to A&E if I can't go to my local doctor, in the next few days?

file:///Users/katrinastuart/Library/Containers/com.apple.mail/Data/Library/Mail%20Downloads/F22AB5BD-BA3E-4F12-A0F9-4F7AC9735D81/DS201954-01.png

file:///Users/katrinastuart/Library/Containers/com.apple.mail/Data/Library/Mail%20Downloads/1C68A5DC-E587-4D54-9D3D-E5D57F66C89B/IMG_20191225_011831.jpg

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fedupnurse67's picture
Replies 6
Last reply 1/11/2020 - 11:53pm

Just wondering if you can have a drink or two while having the opdivo treatments? Would like to have a margarita for New Years Eve!

Donna

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Scooby123's picture
Replies 6
Last reply 1/1/2020 - 5:58pm

Hi all, Happy Christmas to each everyone of you.
Just update last scan clear, will still continue keydruda till June 2020 if respond too it. I have have 4 clear scans now feel fine, apart from aches on joints with arthritis. Plus going through meanapause so more night sweats , aches .
We have had a bad year in family my brother in law
Died at 54 years old sudden, my brother just had his kidney removed for cancer, he 60 on christmas eve.
So not been on board much, but you all still on my thoughts and how you all are doing.
Will be back more in New Year.
Best wishes all
SCOOBY❤

Lynda

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tkoss's picture
Replies 10
Last reply 12/27/2019 - 1:58pm

Stage IIIc. SLNB revealed melanoa in 4 sentinel nodes only. Removed. CLNB not recommended.

--

I have 2 different oncologists, mainly because of communications screw up. They do not confer. One oncologist has not conferred with the surgical oncologist who removed SLN. That has been about 4 weeks ago.

There in lies the problems.

Both oncologists have recommended treatment before a BRAF test was run.

one ordered Opdivo, twice a month for a year. The reason I know this is he gave me a handout on Nivo. With a port. He had me sign something to set the wheels in motion.

The other Oncologist order something once a month , for a year. No mention of a port. It is likely she told me which drug but she didn't write it down and I can't remember. Again she set the wheels in motion. She mentioned a report or study that she read just a few weeks ago regarding treatment she is prescribing.

neither spoke of combo therapy.

so here I am , with a few weeks to spare to research drugs, side-effects, ability to work , etc. and I can't because I don't know what one doc proposes, and neither are working with BRAF test results.
The question of infusions every 2 weeks vs once a month is a big deal. Port vs. not? also a big deal.

since both docs are oncologists and only seem to recommend immunotherapy, the issue of targeted therapy is not relevant in my case? that is a question!.

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https://www.fiercebiotech.com/research/how-one-common-immune-cell-preven...

Checkpoint inhibitors like Merck’s Keytruda are lifesaving for some cancer patients but ineffective for others, and figuring out the differences between responders and non-responders has proven challenging. Now, scientists at the Fred Hutchinson Cancer Research Center believe they’ve found a culprit for the lack of response to checkpoint inhibition—and it’s a common cell that’s prevalent in the human bloodstream.

Immune cells known as neutrophils can flood into tumors, outnumbering cancer-fighting T cells and dampening the response to checkpoint inhibitors, the Fred Hutch team discovered. When they used a drug to decrease the population of neutrophils in mouse models of non-small cell lung cancer (NSCLC), they were able to improve the animals’ responses to checkpoint inhibition, they reported in the journal JCI Insight.

The researchers were clued into the overabundance of neutrophils in checkpoint inhibition non-responders after they analyzed tumor samples from 28 NSCLC patients. They proved out their theory in mice by administering anti-PD1 drugs along with an investigational drug from Syntrix Pharmaceuticals that lowers the amount of neutrophils in and around tumors.

A clinical trial of the Syntrix drug, called SX-682, in combination with Keytruda was recently initiated in patients with melanoma. The Fred Hutch team is currently seeking grants to start its own clinical studies, according to a statement.

RELATED: What causes immuno-oncology drug resistance? 2 research teams uncover clues

Establishing a proper balance of neutrophils and T cells is just one of many ideas being investigated for boosting immuno-oncology drugs. Over the summer, University of Colorado researchers published early evidence that HDAC inhibitors could improve responses to PD-1 blockers, though Syndax Pharmaceuticals has so far struggled to show positive results in studies of its HDAC inhibitor with Keytruda.

The University of Colorado also contributed to a study showing that a combination of Bristol-Myers Squibb’s blood cancer drug Sprycel with anti-PD-1 therapy was effective in mouse models of multiple tumor types. BMS is now testing its PD-1 blocker Opdivo with Sprycel in NSCLC.

The Fred Hutch study didn’t determine exactly how neutrophils interfere with PD-1 inhibition, but scientists have long been aware that the cells can suppress T cells. The Fred Hutch team is looking for other molecular markers they hope can be used someday to predict which patients will best respond to immunotherapy—and which drugs or combination treatments will be most likely to benefit them.

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Tsvetochka's picture
Replies 3
Last reply 12/21/2019 - 7:06pm
Replies by: Bubbles, ed williams

How is colitis usually diagnosed and treated?

I have been getting Keytruda since June with very good results, but I have had diarrhea since September. At first it was just the first few days after each infusion, then the first week, now it's pretty much all the time. My doctor keeps saying that she's concerned about colitis, but she only switches me to different probiotics and says that she's concerned.

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AMcReader's picture
Replies 8
Last reply 12/29/2019 - 11:19pm

Tomorrow will be the last day of the European Christmas excursion I planned with my husband, 20 year old step-son and 22 month old daughter. It has been every bit as wonderful (and, with a toddler, chaotic) as I had hoped when we started planning it just months after my stage 4 diagnosis in March of 2018. We never said these words out loud, but this trip was a way for us to stake a claim in the ground that said we believe we will get to this point together. All four of us. Although I have been lucky to do so well in treatment, my excitement for this trip had been so guarded until it was only weeks away.

Over the past year, I had to stop Ipi/Nivo on 1/31 after the third dose (which was unknowingly my last dose of immunotherapy), managed through 5 days at the hospital while my liver panel went crazy, trudged through 28 days of radiation and joyously watched as the tumors faded away. I know I’m still in the woods but this trip has been such a great reminder that you should keep living, even while you feel your way through the dark world of melanoma.

Wishing all of you HEALTH, happiness, and wonderful memories this holiday season and next decade!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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ktheed's picture
Replies 6
Last reply 1/4/2020 - 8:45am

Hello,

This is my first post here as when Googling LDH I found this website.

I;ve not yet really been diagnosed with anything as I don't feel these are related myself but Ill mention them anyway:

- Fibromyalgia
- Disc degeneration at the L5/S1. > Degenerative Disc Disease
- L5/S1 , L4/5 , L3/4 Circumferential disc protrusion abutting the exiting roots.
- Multilevel mild facet degenerative changes.
- Mild hypertrophy of ligamentum flavum at L3/4.
- Mild periarticular oedema of the postero-inferior aspect of left sacroiliac joint.
- Mild subchondral oedema at the posteroinferior aspect of the left sacroiliac joint could be suggestive of early sacroiliitis.
- Focal high signal medial aspect of the distal shaft of femora likely normal marrow variation
- Mild bilateral trochanteric bursitis noted
- Mild bilateral iliotibial band friction

Below is my LDH levels with dates...is this anything to be concerned about. I do have a yearly CT scan as 2-3 years ago they notices some nodules in my lungs. next one is 21st Jan 2019. The last couple they have said no changes. But I am curious as to why my LDH went up that high and seems to be going back down as I have not had any major injury's or anything.

The nodules were:

3mm sub-pleural nodule in the right middle lobe
3mm calcified granuloma in the right upper lobe
2mm peri fissural nodule on the right

15-Apr-19 - 456 iu/L [135.0 - 360.0]

17-Jul-19 - 620 iu/L [135.0 - 360.0]

09-Oct-19 - 522 iu/L [135.0 - 360.0]

05-Dec-19 - 378 iu/L [135.0 - 360.0]

Canany offer and suggestions or advice on this please.

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fedupnurse67's picture
Replies 1
Last reply 12/20/2019 - 12:08pm
Replies by: MichelleRHG

Hi everyone, completed my yervoy/opdivo treatments a couple weeks ago. Next week I start just the opdivo treatment. Have lab work done prior to every treatment. Just trying to figure out what the TSH level means. After the first treatment it was normal, the for 2 months is was way below normal, now it is above normal. Had a free T3 and T4 done twice. T3 was high and T4 was low, the next time they were both normal or a point away. I don't understand the correlation between the TSH and the free T3 & T4. I thought once it went down, it would stay there? When should I worry about my thyroid not working at all? Ha

Donna

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October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

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Anonymous's picture
Replies 12
Last reply 12/24/2019 - 10:10pm
Replies by: MelMel, Anonymous, HeidiZ, Edwin, lkb

Hello just wondering what a recurrence in a clnd scar would look like and feel like.

I had a tetanus shot 10 days ago and the nurse gave me a shot in my clnd arm. (Kind of frustrated with that) About 6 days later the site of my injection still hurt and then I felt a little raised patch right on my clnd. I cant see anything. It just looks like skin the size of a quarter with fluid underneath that is a little hard in some spots. Where its inflamed it's not a different color from the rest. That night I was examining it and it started leaking blood so I squeezed it, blood came out and it got pretty soft. It has since refilled but alot smaller and semi hard in a little spot. It also is smaller then it was sunday.

Can melanoma recurrence be squeezed out or is it rock hard? Does this sound like anything anybody has had before?

Thank you for your time

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