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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THMoore's picture
Replies 14
Last reply 9/9/2020 - 9:17pm

Today I had my first infusion of IPI/NIVO. I met with a backup oncologist because my primary was on vacation. She explained that since I was on NIVO and had a new tumor appear in my liver, The IPI/NIVO would now only provide me a 30 % chance of survival. I had partial success with 3 NIVO treatments, 6 small nodal tumors either went away or decreased in size and are no longer showing active in a PET. So have many of you had success on IPI/NIVO after partial success on NIVO? Or has anyone heard that there is only a 30 % chance of IPI/NIVO working after partial success on NIVO. Everything , I read gives the combo a 50 to 60% chance. As always I truly appreciate your responses.

Thanks Trent

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RACLAU's picture
Replies 2
Last reply 9/9/2020 - 2:45am
Replies by: RACLAU, gopher38

I've been reading the forum since my father was diagnosed with stage 4 melanoma earlier this year, and have appreciated the wealth of knowledge and information. I'm hoping to get advice on next steps after probable progression on Ipi/Nivo. I've posted his history below and what we've been presented with as potential options.

Background: Age 74, previously healthy and active, diagnosed with localized prostate cancer (Gleason score 7) in 2018 & completed proton beam radiation treatment in January 2019. Possible history of ulcerative colitis (1 episode in 2016 - likely diagnosis, but never confirmed). Melanoma with unknown primary diagnosed as solitary lung met in January 2020. BRAF wild type (positive for mutations in ATRX, MYC, TP53, NF1 and GNAS). His melanoma oncologist is Dr. Lawrence at Mass General.

January 2020 - VAT surgery to remove 4.5 cm lung mass in lower left lobe (originally misdiagnosed as primary lung adenocarcinoma, but pathology after surgery came back as melanoma - big surprise, given no prior history of melanoma). The decision was to "watch and wait" and re-scan in 6 weeks, rather than immediately starting immunotherapy - this was based on the fact that it presented as one solitary met (as therefore could have perhaps been slow growing), and the potential history of ulcerative colitis.

March 2020 - Scans showed new lung nodules (up to 1.6 cm) and a new 1.5 cm lesion in the brain

April 2020 - Craniotomy to remove the brain lesion (tolerated and recovered well, other than developing a blood clot in one calf - currently on Xarelto). Started Pembrolizumab, and received 4 doses total. Well-tolerated, no side effects at all.

June 2020 - Scans showed progression - increase in the number and size of bilateral lung nodules (largest 2.4 cm), and suspicion of possible small mets in other areas (one nodule each in kidney, retroperitoneal space, S1, and T8). Brain scan clear. Decision made to switch to Ipi/Nivo combo (given that Pembro was well tolerated). Received 2 doses of the combo (on 6/24/20 & 7/14/20) - initially well tolerated.

August 3, 2020 - 3rd dose of combo held due to rising AST (51)/ALT (45). Plan was to re-check in 1 week.

August 9, 2020 - Onset of severe headaches and fevers - admitted to hospital for scans and workup. Brain MRI clear. CT showed increase in size of some lung nodules (up to 2.7 cm), but nothing new. LFTs peaked on 8/13/20 to 609 (AST) and 352 (ALT). 60 mg prednisone started, and liver biopsy indicated immune checkpoint induced hepatitis. Developed an additional blood clot in the same leg. Discharged on 8/15/20 feeling well, and remains active (walks 2 miles/day).

Current situation - He is on a prednisone taper (60 mg week 1, 50 mg week 2, 30 mg weeks 3 and 4) - current LFT is AST=46, ALT=71. Dr. Lawrence said that even though the radiologist read the most recent scan as overall progression, he saw a few areas on the lung that looked smaller. The current plan is to re-scan in a few weeks once he is down to a lower dose of prednisone. If there is any evidence of response, Dr. Lawrence will consider giving another dose of Ipi/Nivo (with close monitoring of liver function), given that there are limited other options. Our understanding is that his recent history of prostate cancer, and now the high-grade hepatitis, disqualify him from most clinical trials. There is a phase 1 trial he may be eligible for that involves adoptive cell therapy with a MAGE-A4 target T-cell (Surpass: ADP-A2M4CD8 in HLA-A2+ Subjects With MAGE-A4 Positive Tumors - NCT04044859) - but he would need to match on HLA type and have MAGE-A4 tumor expression (we don't know yet if he qualifies). He also has a subcutaneous nodule on his scalp that could potentially be melanoma - so another option is to biopsy the nodule to see if it's melanoma, and if so, consider TVEC.

Are there any other treatments that we should be considering, or other potential clinical trials that he may qualify for?

Thank you so much in advance for reading this long post, and for any input or advice.

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Julie in SoCal's picture
Replies 5
Last reply 9/8/2020 - 7:02pm

Good Afternoon, Friends!

The last few weeks have been a whirlwind (or a dumpster fire on a train wreck).

But first the good news: All cancer in my body (minus head) is gone! This is a better than hoped for response. The chemo hell has worked!

Now the bad news: I have numerous tiny (5mm is the biggest) brain mets and cancer in my spinal fluid. At this point we know it is Larry the Lung Cancer, and that I am an EGFR Register (targeted therapy didn't work very long).

The current plan is to get a plan. I'll have a full spinal MRI (Atavan take me away!!!) and a meeting with the expanded brain trust at St. John's on Tues. I also should have the results from my second (technically third -- one missed) spinal tap.

As I understand my options, they are:

1. Whole brain radiation
2. Chemo poured directly in my brain via a port.
3. Immunotherapy. (I'm currently on the ipi/nivo combo)

I am not a fan of whole-brain radiation. At this point in time, I don't have any neurological deficits that are apparent, anyway. WBR would leave me with some. I have no earthy idea why I would do this at this point in my life.

Chemo poured directly into my brain makes sense, but it's kind of forever, and I have to imagine that my quality of life is going to take a significant hit. But, if I understand it right, if it works, it works fast. I'm just not sure about the math. If I spend 6 weeks in chemo hell again what does that buy me? 6 months of good life? 3 months?

I am a big fan of immunotherapy. This is probably my melanoma bias. I know it crosses the blood brain barrier, and I know it works in the brain and CSF. And I have tolerated it fairly well. It's not hell and it's manageable. So life would be reasonable. But I also know it takes a while to work and that it may make things bigger before getting better. This doesn't sound like what is currently needed. Also I'm not finding anything on immunotherapy and lepto disease in NSCLC. I suspect this is because brain involved peeps don't make good ratties.

So, friends. Am I thinking right? Talk to me.

Peace to you!
Julie

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AmyM's picture
Replies 2
Last reply 9/4/2020 - 1:47pm
Replies by: LH2000, Mark_DC

Hey,
Thankyou so much for the advice and guidance so far, it all really helps when trying to deal with melanoma. My dad recently completed SRS for 3 intracranial brain mets. Dad is on targeted therapy enco/bini and this was stopped for a few days before, during the treatment and after- in total about 8-9 days. Dad was on dexamethasone 12mg for the SRS and the day after then it was stopped. The next day he started feeling unwell and this progressed to then a hospital admission. A CT showed a new 1.5mm lesion and swelling around the original mets. Unfortunately then an MRI showed a further 2 small lesions. Dad did well and was discharged from hospital 2 days later and is feeling his usual self again, so thankful for this as it is a worrying time.
The oncologist now is continuing targeted therapy hoping that we have some more time however he has now said things aren’t looking great.
Has anyone had melanoma progress this rapidly when off treatment?
It seems SRS is off the table, is there a time frame when you can use SRS again?
Does anyone have any other treatment suggestions?
Feeling like we are running out of options. We are being treated in the NHS and at times I feel it’s not person specific as I feel dropping dads dexamethazone that quickly wouldn’t have helped his symptoms however it did allow us to find the 3 new lesions. Dad is 56 still active, working and is his normal self so this all seems hard to believe.
Thanks,
Amy

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My wife has had recent disease progression accompanied by LDH (lactate dehydrogenase) levels spiking over 1,000. Are there any meds/therapies to bring LDH down to help w/ tumor suppression? Our main oncologist says "no" despite there being some good papers from the last 5-10 yrs on meds that can reduce LDH in the lab. Some natural supplements that might reduce LDH include Green Tea Extract, Xi Jue Teng (spatholobus suberectus) and Gossypol (cottonseed oil). We are trying the first 2. We also have some Hydroxychloroquine (HCQ) which was going to be used with TMZ about 6 months ago, but it was decided to skip that in favor of another targeted therapy. HCQ has been in some clinical trials as a good tumor suppression agent, works as an Anti-Autophagy agent to suppress tumor growth. I can't convince my wife to just start trying HCQ to see if it helps. Any experience or advice with this? Seems like some docs at Univ of Penn are big fans of using HCQ with cancer/melanoma.

Thanks!

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space oddity's picture
Replies 5
Last reply 9/4/2020 - 1:25am

My husband has been on Keytruda for almost two and a half years now. It has worked very well for him, with no side effects except from mild vitiligo on his face and hands. His blood tests were fine as well, but he has noticed a gradual drop in his hematocrit levels and now it's on 39. Is it possible that Keytruda causes this drop? When he asked his doctors they told him it is the hemoglobin they're interested in and didn't give much notice. Thank you

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AMcReader's picture
Replies 15
Last reply 9/3/2020 - 6:35pm

I’m sad/furious/heartbroken/angry to report that the biopsy for the spots in my peritoneum came back as melanoma. So back in the treatment ringer I go!

I had a long chat with my oncologist last night and made the decision to do a BRAF combo with PDI immunotherapy. I am blanking on the names of the drugs right now because they are not ones that I’m that familiar with yet. Essentially, these are the drugs from the INSPIRE trial which I understand are now FDA approved.

I am excited about this treatment plan because I’m hoping I’ll be able to get some quick pain relief, but also build up a durable response rate with PD1. My oncologist shared that for patients like me they are seeing 70% PFS at 6 months and 30% PFS at 30 months (which is where they start to see a leveling off), so I will remain incredibly hopeful that I will be part of that glorious 30%.

I’m allowing myself a couple days of sadness, but also working on building my strength and determination back up to get into this fight again. I have an amazing, kind, loving, soul-mate of a husband to fight for and my hilarious, sweet, spunky, beautiful little girl!

Back in the ring I go! Determined to know this shit out again.

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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Chelem2's picture
Replies 2
Last reply 9/3/2020 - 10:45am
Replies by: kwb, QuietPoet

How frequent is it to have moles biopsied after the first primary melanoma? And if multiple biopsies do they ever come back normal? For some reason my biopsy wasn't logged into the system so I am having to wait still on my biopsy. Will end up being double the wait they said.

The doctor said he wouldn't have ever chosen that mole to biopsy except it showed up new. I am driving myself crazy! It was just a dot. And my original Stage 1A was on my leg, this is on my back. What does that mean? Or does it mean anything? I never know what to ask in these appointments and I get too deer in the headlights. It just makes me go tilt emotionally and all sense abandons me. Not proud of that!!!

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Beany's picture
Replies 10
Last reply 9/2/2020 - 3:59am
Replies by: Beany, ed williams, MelMel

Hello everyone,
I haven't posted for a few months. I was in hospital with raised ALT levels but felt fine.

After infusion number 3 of the ipi/nivo combo on April 2nd, my ALT crept up to 748 so they put me on Prednisone and even Mycelophate Mofetil. My ALT is now at 75 and slowly coming down. I am on 35mg of Prednisone only which the doctor is cutting by 5mg per week.
I have been fortunate and achieved very good reduction in the lung and liver tumors. The 20mm and 15mm tumors in both lungs are not visible on the latest CT. The liver is nearly there too. I want to go onto Opdivo alone and give myself the best possible chances.

The doctor said because the ALT went up so high, he doesn't want to give me Opdivo as he said the risk is too great.—I could die or suffer liver failure. He also said that because I have had very good response, it is not necessary at this stage to administer Opdivo as the combo is still providing reduction. He wants to monitor with regular three-monthly CT scans and go from there.
I am in Japan where the doctors are overly cautious and very careful.

Is this normal to not be refused Opdivo due to ALT going up so high?

Thank you in advance,

Adam

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sing123's picture
Replies 4
Last reply 9/1/2020 - 5:50pm
Replies by: THMoore, sing123, Bubbles

Do you recall for how long you had if?

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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New CDC report shows 94% of COVID-19 deaths in US had underlying conditions.
I find the specific breakdown of underlying conditions very interesting since this further shows how unhealthy lifestyle and diet influence these exact underlying conditions which play a detrimental role in the outcome of not only Covid infection but a multitude of other illnesses as well.

https://www.nbc4i.com/community/health/coronavirus/new-cdc-report-shows-...

I also came across the following quote which resonated with me since I am living proof of the following context.

"If you do not make time for your wellness you will be forced to make time for your illness. Read that again."

Melanie

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Anyone experienced abdominal fluid due to liver tumors? Mom is in ER as her belly was swelled up and she was having hard time breathing. CT reveals fluid due to large tumors in liver . She is scheduled for radiation on Tuesday to spin Mets and doc cancelled her carbo/taxol infusion as he found a spot for her in a trial xmab20717 which is similar to ipi/nivo
I am less hopeful of the trial seeing she only progressed on ipi/nivo last year . I don’t know why he is so hung up o this particular trial.
Her biggest liver tumors are 7cm,5 cm , 4 cm and 3 cm with many innumerable ones. If the trial doesn’t work I think then there will be no time left to do anything else. It’s been 3 months I have been trying to get her on some treatment at UCSF. Multiple appointments and still no treatment only thing I have been hearing is we are looking at options. Meanwhile her disease progressed like a fire and she started to decline.
Sorry for the vent here.
Getting back to my question does anyon has any experience with abdominal fluid from tumors and has recovered from it ?

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How long has the swelling lasted after completing treatment? Hubby's still on prednisone 5mg (2.5 yrs) and still experiencing intermittent facial swelling, skin redness, rashes, vertigo... Every time he tries to taper, it gets worse. He had a grade 4 rash with his first dose of Keytruda and Opdivo. Went to only opdivo for his next 11 months. Has always had the swelling and symptoms.

We are grateful for the survival of the stage IV melanoma. He had a 13cm lesion under his left arm and seven internal lesions. We had our first treatment in September 2018 with dramatic reduction in tumor load BEFORE Christmas. We continued treatment until November 2019.

Nan

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THMoore's picture
Replies 1
Last reply 8/29/2020 - 2:42pm
Replies by: ed williams

I received the PET SCAN results back and it explains the following:
There are tracer uptake in the spleen, adrenal glands and kidneys, pancreas and bowels. My previous 2 PET SCANS do not mention this. The oncologist said this is normal. This change occurred when a new lesion was found in my liver. Can someone help explain what this means. Is it the beginning of new lesions?

Thanks,
Trent

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GerryG's picture
Replies 4
Last reply 8/29/2020 - 10:28am

Today I received my CT scan results, NED. I had 2 doses of combo immunotherapy in 2017, due to liver enzyme elevation I had to abandon treatment. At the time I was devastated, but luckily I had a fantastic response.
Always going to be a worry as to when and if the Melly monster will reappear, but today I’m doing a happy dance.. I live in not tooooo
sunny Scotland, the protocol here is after 3years of no recurrence, once a year scans, and 6
month reviews..I like to give a wee bit of positivity to all of those who have joined the battle...

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