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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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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sing123's picture
Replies 3
Last reply 8/29/2020 - 3:13am
Replies by: MelMel, sing123

Hi dear friends, heading into the clinic for my first infusion, I thought of how lucky I'd be to coast that first month without side effects, as I'd read is pretty often the case. Boy was I wrong about me! Side effects hit second day. Luckily so far they resolve pretty quickly. Now I have a skin rash. Has anyone has this side effect on treatment and how did you manage with any natural options? I am on Triamcinolone (SP?) and Benadryl. I also continue to take my Dexamethasone for swelling from zapped brain mets, but only at 2 mg. Am hoping that I won't have to go on a stronger one. And also, have you heard that skin rash may be a sign of treatment effectiveness? I sure hope so!

Very best to you all!

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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Fortysomething's picture
Replies 6
Last reply 8/28/2020 - 6:19pm

Good morning
Had a call offering a sentinel lymph node biopsy,. Already have had the wle , but couldn’t do slnb due to covid-19. Wle was 3months ago and had set my mind to just see what happens.
Decided to have it done but fear of what happens next as kicked back in, has anyone else had a delayed slnb.

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Lori0529's picture
Replies 1
Last reply 8/28/2020 - 3:08pm
Replies by: Sdmotorcop

HIstory:

October 2007
Lower Right leg Melanoma in situ
November 2015
Upper right leg/groin
Skin tag became dark
“mature melanoma”
Breslow Thickness – 2.85 mm
Clark’s Level: Four
Ulceration: Present
Wide Excision
Sentinel Node Biopsy - Negative
February 2020
Enlarged groin lymph node had appeared on follow up CT Scan
Biopsy confirmed Melanoma
Treatment plan: Immunotherapy followed by surgery

2/17/2020
Opdivo/Yervoy Round 1
3/9/2020
Opdivo/Yervoy Round 2
3/30/2020
Opdivo/Yervoy Round 3 scheduled
Did not take place due to liver numbers
AST 115, ALT 257
Steroids prescribed (Prednisone 10 mg taper for 24 days ending April 24)
4/14/20
Received NEO Genomics report that confirmed BRAF V600e mutation
4/20/2020
Liver numbers had improved to AST 19, ALT 28
Opdivo Only infusion
5/4/2020
Opdivo Only scheduled
Did not take place due to high liver numbers again
AST 217, ALT 482
Steroids prescribed (Prednisone 10 mg taper for 33 days ending June 5)
Surgery scheduled
6/11/2020
SURGERY
Complete Superficial Inguinal Dissection (all lymph nodes in right groin removed)
6/29/2020
Post Op Appointment
Pathology report indicated 9 lymph nodes were removed -- 1 of the 9 positive for Melanoma
Treatment plan is now "surveillance" that includes Brain MRI and CT scans every 3 months

Have recovered well from the surgery and have only had slight leg swelling.

Am waking up with extreme joint pain in both shoulders and one hand each morning.
Last immunotherapy infusion was in April. Has anyone else experienced this?

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