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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SusanMA's picture
Replies 5
Last reply 5/12/2020 - 3:04pm
Replies by: SusanMA, TimCT, Johnjk04

Can anyone recommend a good derm near Fairfield, CT for annual skin checks?

Many thanks in advance!

SusanMA

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MelanomaMike's picture
Replies 12
Last reply 5/14/2020 - 9:23pm

So, i was in line at the bank cashing our Stimulus check and this guy walks up behind me and ask's "Is this the back of the line"? I said "No, this is the front of the line and we're all standing backwards"..
I dont get out much cuz of my health, the pain, the anemia, and now the 3rd virus that China has released to my country COVID-19 so, i may have been to rough on the guy at the bank haha..Anyways, Here i am family! After all these months, seems like years since i last wrote, iv had a "transfusion" a few weeks ago, i needed blood, im apparently bleeding a tad quicker then i can produce it so, im sure transfusions are in my cards, especially if i keep staying at or below 7.1 on my Hemoglobin (this last time), it kept going down so we handled it. And boy do they make you feel better! Like nite/day! I even thanked the prior owner who donated it! I just wish i can get a grip on pain management, like you all know, my Naproxens have been very good to me thru all my prior surgeries, tumor pain, or those deep nerve pains i use to get back before they pulled out that what, "8cm" Mel monster out my right lung, but now there failing to work on my growing Sigmoid tumor wich is giving us the middle finger in CT scan photos, last scan 2 months ago, it measured 5.0, now its 7.1, just shy of 3 inches, 2.1cm growth in 3 months time, try havin' fun with that in your Sig.. Oh! But! All other tumors have shrank in half! Ill show you my Pathos Report on separate post, atleast something positive is FINALLY happening!! Ive been offered opiate type meds by my Palliative doc but always passed on them, i think its time to try something, ill see him next Wednesday during my infusion, hes been great, really trying his best to hone in on different medications to relieve the constipation caused by the damn monster thats road blocking my waste tunnel! Cenna and Milk of Magnesia (this will be #4), the pain has made me cry a few times, it just busted out of me like the Hoover Dam, heating pads, electric messager, ice packs help but, its all in my head i think, the monster leaves when it wants to leave...Now, the surgery card "is" in my oncologists back pocket but, as he put it with my last tumor, "I'd rather have your therapy (ox40/icos) do the work and not cut you open every time"....I get what he's saying and on paper thats great but, in real time hes not the one feeling this demon eat my guts either. He knows how i feel & has faith i can endure it just a little longer which i think i can, its become my usual norm, including my last bulging painful tumor on my side that was finally taken out, im used to "taking one for the team" just to get to my next scan and see what size he is, then maybe i can have a Quality Of Surgery. My next scan is June 3rd so, fingers crossed..
Well ya'all, i wrote a book and i should have some courtesy and leave some of MRF's storage available for the next person, I love you all and hope your stable at the very least, im gunna browse & catch up, hope to be back soon, i can never promise these days....Mike PS: and thank you to the person who reached out awhile ago, i forgot your name, my wife said it but since then its sliped my mind, always feel free to write her for an update, it makes us both feel good at the right time..

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/7/2020 - 7:03pm
Replies by: Anonymous, Julie in SoCal

So I had a mole biopsy done and am waiting on the results, however they were taking longer than usual so I called to see what was going on. They said they called the pathologist to make sure they got them and they did they just had “deeper sections” they needed to look at..this freaked me out. Does this automatically mean melanoma? Why would a normal mole have deeper sections?

B

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/8/2020 - 5:22pm
Replies by: THMoore, hxcadam, Tsvetochka

I had surgery to remove part of my parotid gland 10 weeks ago. 45 nodes were removed and all were clear. Had 1 node with melanoma within the gland. I had radiation therapy to my neck and finished 10 days ago. Now I have a lymph node starting to swell beside the original incision. My question is , can radiation therapy cause lymph nodes to swell? I appreciate any responses.

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Shelby - MRF's picture
Replies 3
Last reply 5/16/2020 - 12:28pm

Dear MPIP Community:

I hope this note finds you well. In the midst of this very strange time, the MRF is trying to find ways to keep our community united, supported and educated. I'd like to share a few items we have in the works:

Because all of the April, May and June educational and fundraising events have been cancelled/postponed, we are offering many programs virtually. I know it's not the same as being together in-person, but I hope it provides a bit of normalcy. First, we developed the #CancerHasNoCurve Resource Center, where new educational and support resources will be posted every Monday throughout the month of May (and possibly June). These offerings will be melanoma-specific, not COVID-specific. 

COVID-19 and melanoma information can be found here, and we are planning to host a live webinar on navigating clinical trials during this time, as well as making other resources available. 

Our Miles for Melanoma run/walks are currently being offered virtually, and we would love to have you participate if you are able. 

Each Thursday during the month of May, we are hosting a Facebook Live session called "Ask a Dermatologist". You can listen in via our Facebook page

Last, but certainly not least........in the coming months, we will be updating and overhauling MPIP! This will be a big project and likely won't be implemented until the Fall, but I wanted to give you a heads up. Our hope is that the patient forum becomes easier to navigate, more user-friendly, profiles are easier to update, interactions between users (likes, hearts, virtual hugs, etc.) are implemented, those diagnosed with rare subtypes have a place to connect, and that, overall, the community grows and becomes stronger. If you have ideas, thoughts, comments or suggestions, please send them to me at education@melanoma.org

As always, please reach out if the MRF or I can be helpful to you. 

Best,

Shelby - MRF

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Just wondering if anyone has been on this treatment twice. My brother had great success and was off all treatment for two years after being on this for one year,. One spot returned and so now he has just completed his 4th double infusion treatment and will be getting scan later this month. Has anyone else had experience with this ?
Thank you

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Leslie'sHusband's picture
Replies 3
Last reply 5/7/2020 - 10:52pm

It's been a while since I've even been on this forum, let alone post, so I thought I'd post an update. For those who may not remember, my wife Leslie was diagnosed with melanoma (ended up being 3b) on her left thigh, with the sentinel lymph node testing positive in Feb of '14. After three surgeries, the last being a complete lymph node dissection of the left groin area done at Duke Cancer Center in April '14, she's doing well. None of the additional nodes removed tested positive. She had CT scans done every 6 months for the first 3 years, and then 12 months for the next two years. All were clear, at least as far as melanoma is concerned. From the very first scan, the docs noted a small spot on her right lung, but never really mentioned it again. As far as Melanoma is concerned, she has been NED for over 6 years now. We were expecting to be done with Duke after her year 5 scan, but that spot on her lung suddenly became important... It grew almost 50% from year 4 scan to year 5 scan. Melanoma doc referred her over to the thoracic docs for further review. Consult with him gave us two options: Wait and watch, or go get it. They couldn't biopsy it because it was almost dead-center in the lobe of the lung. She had him go get it, but they had to take the upper lobe of her lung to get it. Turned out to be an adeno carcinoma. Lung Cancer. Good news is that it was very small, and it was caught VERY early, before it had a chance to spread. Now, instead of being done with the Duke cancer center, we got to start over with the scans. 6 years NED w/melanoma, 1 year NED w/lung cancer. Next scan will be done locally due to the Covid-19 thing going on, but it will still be read by Duke. All of the doctors and staff at Duke have been absolutely wonderful to deal with.

Dave

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TimCT's picture
Replies 3
Last reply 5/7/2020 - 11:26am
Replies by: JudiAU, TimCT, Threefitty

Hi Guys,

Had my 4th and final ipi/nivo combo treatment yesterday. Everything went fine as it always does, and nothing of note on my blood work except slightly elevated liver enzymes, as usual.

My doctor was surprised that at this point, I've had no major side effects to report, not even a rash, or a few bouts with diarrhea. Really, I've only had to deal with fatigue, which lately hasn't even been as issue like it has in the past few months. I had some joint pain a few weeks ago that lasted a couple weeks. But that's been all. Going by the labs, there don't seem to be any issues with my thyroid or my pancreas.

On the face of it, that's great, right? None of the AEs that we were warned about. When people ask how I'm doing, I just kinda shrug my shoulders and say 'fine', because there isn't much to talk about. Everyone seems to be pleasantly surprised and cheered that I'm doing so 'well'.

Of course, privately, I'm having a very hard time trying not to freak out because even though I shouldn't be, I'm at least on some level worried that no AEs = the immunotherapy isn't working. I know that there isn't really a concrete correlation there, further, Dr Sznol reminded me of that yesterday, and that I'm still early in the process. Its only been 9 weeks (and 5 days, but who's counting?) since I've started treatment and there is a definite requirement for patience. I had progress early on - the lump on my neck shrunk by over half, I would say. However, I haven't had any progress like that in a few months, and there now seems to be some new inflammation under my jaw. Is it disease progression? Is it inflammation because of a response? Who's to say at this point? I have scans scheduled for the 27th of this month, so I suppose they will tell the tale. I'm already anxious, of course. Sigh.

I suppose that part of dealing with this diagnosis is trying to find positive things to hang on to, and this early there aren't very many. Its still very much trying to deal with the unknown. Hopefully as the days and weeks and months roll on, I'll get better at that. Sorry for the rambling, though at least writing it out helps some!

Tim

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hxcadam's picture
Replies 4
Last reply 5/7/2020 - 12:49pm
Replies by: hxcadam, MelMel, tedtell1

I've had 3 Opdivo infusions as well as radiation to all the original sites. Clearly they haven't worked as well as I'd like. Is there any reason I shouldn't be taking the combo? Trying to get a hold of my doctor today as tomorrow is my next Opdivo infusion and I want to really stress the fact that I want the combo but just looking for other opinions on here as well. BRAF+ - Original site was right chest wall with small amount found in Right axilla lymph nodes.

CT CH/ABD/PEL W/ CON
------
5/1/2020 CT of chest, abdomen, and pelvis
CLINICAL STATEMENT: Metastatic melanoma. EOD
TECHNIQUE: Multislice helical sections were obtained from the thoracic
inlet to the pubic symphysis after oral and intravenous contrast
administration.
RADIATION DOSE (DLP): 1453 mGy-cm
COMPARISON: January 2017, 2020 CT scan.
CORRELATION: None.
FINDINGS:
LUNGS/AIRWAYS: Small left lower lobe
metastases are decreased in size and now measure 1.8 x 1.4 cm along the
inferior hilum previously 2.1 x 1.8 cm and 0.9 x 0.9 cm in the posterior
costophrenic sulcus previously 1.2 x 1.1 cm
PLEURA/PERICARDIUM: No effusion.
MEDIASTINUM/THORACIC NODES: Statuspost right axillary dissection.
No new adenopathy
HEPATOBILIARY: No liver mass or biliary ductal dilatation
SPLEEN: 4.0 x 3.1 cm mass in the medial
superior pole is increased in size, previously 1.5x 1.3 cm. Several new
hypodense metastases measure up to 2.7 x 2.4 cm in the inferior pole
PANCREAS: Unremarkable.
ADRENAL GLANDS: New 1.6 x 1.2 cm nodule in left adrenal body
consistent with metastasis.
KIDNEYS: Unremarkable.
ABDOMINOPELVIC
NODES: No adenopathy.
PELVIC ORGANS: Mild prostatomegaly
PERITONEUM/
MESENTERY/BOWEL: No obstructive bowel dilatation, ascites or
peritoneal masses
BONES/SOFT TISSUES: New small lytic metastases in T2 vertebral body
eroding the left anterior cortex, right pubic bone and left iliac wing
OTHER: None.
IMPRESSION:
1. Since January 2020, increased metastatic disease in spleen, left
adrenal gland and bones.

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Broersma's picture
Replies 1
Last reply 5/15/2020 - 12:09pm
Replies by: Bubbles

I have Stage IV Melanoma and Mutliple Sclerosis. I am currently on Tafinlar/Mekinis, which has worked well to reduce the tumors (multiplelymph nodes involved). As we all probably have been told, the Tafinilar/Mekinist combo normally is only effective for 9-14 months. I have been on the treatment for almost 2.5 years and, except for the unfortunate side effects, am doing well. Should the melanoma spread to other areas, I am told the next step would be immunotherapy. However, since I have MS, I have been told by experts that I am not a candidate for immunotherapy. I'd like to know if anyone has both advanced Melanoma and MS and, if so, have you had immunotherapy. It's hard to hear that, in the event the cancer spreads, I have not other treatment opnitions. I appreciate your help.

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Hello,

I was diagnosed with Stage 4 Melanoma in 8/2017. I have mets to multiple lymph nodes. I have been on the Tafinlar/Mekinist Combo since then and have responded very well. Mosty all of the lymphy nodes are now within normal limits. The side effects have been difficult and many. I am on intermittent dosing. In December of 2019 I was hospitalized for congestive heart failure. I was taken off the Mekinist as that seems to be the culprit. After consultation with a Melanoma specialist, I cannot resume the Mekinist until I have an echocardigram that is within normal limits. With the elimination of the Mekinist, the side effects of the Tafinlar seem to be more intense (nausea, vomiting, diarrhea, chills and now intense joint pain). I learned that the combo of the two drugs helps to control their toxicity.
Although the dosage of Tafinlar has been reduced, I still have significan discomfort from the side effects. My quality of llife.\ is not where I would like it to be. Anyone else develop cardiac problems with these medications?

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LH2000's picture
Replies 3
Last reply 5/5/2020 - 7:14pm
Replies by: Bubbles, LH2000

My wife diagnosed with stage 4 in Oct 2018, no recent primary but had small stage 2 in 2006 w clean scans for 5+ yrs and stopped by insurance and STD of care.

1. Ipi Nivo combo, 2 infusions and then grade 3 AE in hospital 2 days. 4 month taper on steroids, no treatment. Initial 25-30 pct shrinkage. Also SRS radiation for some brain Mets.

2. Finally resumed Nivo only for 3 treatments. Growth.

3. Due to NRAS mutation, tried Trametinib MEK inhibitor solo 4 mo. Initial some response, then growth.

4. Tried Nivo plus olapaparib due to ATM mutation. Growth.

5. Back to Ipi 3 mg solo plus Leukine injections to help reduce toxicity. Garde 1-2 AE. Oncologist wants to stop ipi.

6. Recommend TMZ plus Hydroxychloroquine, it works as anti- autophagy for cancer. Due to regrowth of brain Mets. We're doing more SRS radiation instead.

What do we try next?????

Need a good COMBO therapy, our doc doing too much single agent, doesn't work!!!!

Nktr-214, anti lag-3, IL-12 or 2, TIL, more NRAS focus with cdk46 or other inhibitor?????

Help!!!!!

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Butterfly74's picture
Replies 13
Last reply 5/8/2020 - 4:58am
Replies by: Butterfly74, fairystar, MLD1973, Anonymous

Hi, I am recently diagnosed with Stage One melanoma on my upper back.

Depth of. 7mm and told I am 1a. I have posted before about my strong anxiety and had some lovely replies.

My doctor said the statistics are about 97% over five years of surviving this and others have replied to say similar. I was trying to hold on to that hope to help me try and get through this as I am really struggling. I wish I hadn't but I entered my pathology details in a melanoma prognosis calculator and it says I only have a 90% chance of survival over ten years. This may still seem good statistics but
this info has has totally terrified me, I don't want to take anything away from the warriors on here who are struggling with worse odds, but I feel like I won't survive this. How accurate are these calculators? One calculator also said I had about a 7% chance of a positive node during a SNB but my doctor only did the WLE as said I didn't need it. I'm scared I'm really at Stage 3, this has taken over my life and I'm not functioning very well with normal life.

How do people cope with this always over our heads. I feel like I'm waiting for the next shoe to drop.
Sorry for the long post, if anyone can help me please.

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Anonymous's picture
Replies 2
Last reply 5/3/2020 - 7:08am
Replies by: Anonymous, Julie in SoCal

Hi, I have read a lot of reassuring and positive replies by Janner. Is she still on this forum and able to help? I am hoping there is a support group for Stage One people as I am newly diagnosed and struggling with the uncertainties of this. I admire the strength and courage of everyone on this forum and need some help. There seems to be many people who were in my position and are now Stage 4, I worry about the cancer spreading as it seems like it happens a lot.
Thank you.

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Hi all,

After a whirlwind 2-months it seems like this isn't going to end anytime soon. Two months ago I had a 2b melanoma removed from my ear with WAE and SLNB. Negative on SLNB and margins were clear. About 5 weeks after surgery I had a skin check for a new mole that appeared on the ear that just had the WAE. The derm said it looked normal but because it was new we were going to remove it. He said that even if it was melanoma it would be small and a new one rather than a resurgence.

Results came back today and it was moderately atypical but not melanoma. I'm supposed to go back and get margins around this one. Derm said it was not much to worry about and would just be some more off my ear (what's left haha). I spoke to the surgeon and he seemed concerned that this could be a resurgence and would send me to stage 3. I'm guessing he was concerned that the pathologists missed that is was melanoma? or perhaps was turning into melanoma? but from the old one and not a new one?

I haven't received the pathology report yet but the internet is less than helpful on moderately atypical. That seems more often used to describe the mole itself. I think it would be a coincidence that I had a new mole that was unrelated, but it didn't look like resurgence from what I could find. Anyone know more resurgence/atypical versus melanoma? I'm confused from the different perspectives from doctors.

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