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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caman's picture
Replies 5
Last reply 4/29/2020 - 5:24pm
Replies by: caman, ed williams, Bubbles

Hi fellow warriors,

Just finished my first month on Keytruda, and results are real good. The tumor on my neck shrunk significantly, there's hardly anything left of that little animal.

But I been reading about on PDL1 expression and its use as a prognostic indicator. 50 percent and above is a real good indicator immunotherapy will be effective and the prognosis is much better.

Mine was 5 percent. My doctor said that's good enough. He also said depending when the expression was taken, before immunotherapy or after, the percentage would be different. If done after, the percentage would be higher. Mines was taken before. Anyone else here have any experience with this you can share? Thank you!

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boatski's picture
Replies 4
Last reply 4/30/2020 - 5:38pm
Replies by: boatski, sj, SABKLYN

Hey all,

You can see me last post for details on my brief melanoma experience. Basically I am 2b (ear) with Negative SLN. It was found in February and surgery was early March. These past several weeks I've had very mild headaches. They sound completely opposite of what I've read about, they typically are better in the morning and get worse in the evening. Advil doesn't seem to help, but I was on it for most of March because for some reason my body didn't like stronger opioids post surgery (couldn't sleep haha). Caffeine does seem to help some. I'm chalking it up to stress because there does seem to be a high correlation with stress/anxiety and headache intensity. It varies from about a 1/10 to 2/10 on the pain scale. I have no other symptoms. My surgeon and onc suggested that it was unlikely Melanoma in the brain. I am getting an MRI tomorrow (last one was less than 2 months ago).

I know this is pretty strong paranoia, since I just had an MRI, the symptoms don't seem to be typical of a brain met from what i've read, and I'm only stage 2. But I'm curious if others have experienced a quick just from stage 2-4. Partially just trying to stay engaged with something as my work is currently very slow with virus and I have far too little to do at the moment.

I've also tried numerous anti-anxiety medicines and they don't appear to have an impact. Even the strong stuff doesn't seem to reduce anxiety.

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/1/2020 - 2:39pm
Replies by: Anonymous, THMoore, Linny

Is there anyone who was originally diagnosed as 3B, still 3B?

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Sdmotorcop's picture
Replies 5
Last reply 4/29/2020 - 2:18pm
Replies by: Edwin, Bubbles, sandyd77, BillB

After I advanced from a 3C to stage IV, my oncologist had me stop taking Nivo (I had 10 of 12 infusions). He then started me on IPI (first dose last Friday). I asked him why he wasn’t giving the IPI in combination with the Nivo. He told me it was obvious the Nivo had not done it’s job and wanted to approach it from a different angle.

My question is this... will I get the benefits of a “combo” without actually having both meds administered at the same time? Does the Nivo that I’ve already had continue to work without having more infusions?

Thank you for any insight

Bruce

Bruce

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boatski's picture
Replies 2
Last reply 4/28/2020 - 10:19am
Replies by: boatski, chrispl1974

Hey all,

I've been reading a lot on here but decided to enter the conversation. I had a whirlwind Diagnosis. In Nov I had a skin check and nothing was exciting. In January I noticed a new nodule on my ear. It grew pretty quickly and I finally got into the doctor in mid February. The Derm said it was not likely to be anything but did a deep shave biopsy (first biopsy ever as a 31 M, so had no idea otherwise). Got a call 4 days later that it was aggressive nodular amelanotic (not pigmented) melanoma. Was rushed to appointments with oncologist and surgeon who does a ton of neck dissections. Had an MRI, CT, bloodwork and chest x-ray. All came back good. Had a WAE on March 12 with 4 nodes in the SLNB. Got the good news that they all came back negative. Officially I am in 2b now. However I'm really quite on edge. My pathology (below) indicates that I just about as high risk as possible. That in combination with the ear location is making me paranoid (and I'm told rightfully so). Anyone been through this? I know that it could be that nothing else happens but it just seems like a very high risk situation. I'm looking at a nivo clinical trial but may not qualify depending on when it reopens from COVID. Being stuck at home is making me stew more than I should be. I'm working with a counselor but it's still hard to get over anxiety that has a legitimate source haha.

Mitotic rate -11
Depth - 3.5 (at least, I'm told it was 3.5 but I was told at least 3.5 with shave)
Ulceration - positive
Lympohvascular invasion - positive

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Wildcat99's picture
Replies 7
Last reply 4/28/2020 - 9:52pm

Hope everyone is doing well. I'm a newly diagnosed stage 3b. I had a neck dissection 4 weeks ago to remove a golf ball sized growth on one lymph node and had many others removed (all of the others were clean). Plan is to lay low another few weeks given Covid and then regroup to discuss treatment options again. After initial meetings, I'm probably headed down the Opdivo path. My question to this group is regarding the use of radiation in the neck prior to receiving Opdivo...the doctors tell me it helps prevent the melanoma from coming back in the same area but doesn't improve OS rates. So I'm trying to figure out if it makes sense to get radiation given the potential side effects. Any thoughts/advice would be much appreciative. Thanks for reading my post. Take care.

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Anonymous's picture
Replies 9
Last reply 5/2/2020 - 4:20am
Replies by: Anonymous, SABKLYN, Mark 2020

I have recently been diagnosed at stage one. I am so scared and it is affecting my day to day living. I feel frozen and keep researching on the internet which only makes it all feel worse. I am so fearful it will spread at some stage and I'm waiting for a lump in my nodes to appear.
Does this feeling ever subside? It has changed my whole life and I don't want to feel so scared all the time.

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Replies by: Beany, MelMel, ed williams

Hello everyone,
I am still in hospital waiting for my liver enzymes to fall while taking 35mg of prednisone daily.
AST has dropped down to 95. However, ALT is is stubborn and holding steady at 354.
Could the nivo/ipi be winning the battle keeping the level high?
I have achieved good tumour reduction in lungs and liver.
Regards,
Adam

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doragsda's picture
Replies 15
Last reply 4/27/2020 - 10:24am

I was able to contact Mike's wife. The good part is most of his tumors are shrinking from the clinical trial he's been on.

The less than good news is the tumor in his sigmoid colon continues to grow (it's currently at 7.1cm) and is causing Mike a lot of pain and distress. She said he is really struggling right now.

That is all the news I have, but Mike is still fighting. I told her that he has been an inspiration to so many on this board, and he is often asked about.

Please turn your thoughts and your prayers toward Mike and his wife, Hillary.

Dave

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Beany's picture
Replies 3
Last reply 5/6/2020 - 1:00am
Replies by: STL Mike, Beany, KAP715

Hello everyone who reads this post,

I did three combos but liver enzymes, AST and ALT, went up to 353 and 658 respectively. They started dropping naturally down to 174 and 450 in two days without steroids. Now I am on 35mg of prednisone and the levels are 105 and 334.
Is 35mg a lot? The doctor said I will be on this dosage another week which will be a total of two weeks.

All the best and thanks in advance for any replies,

Adam

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/28/2020 - 9:58pm
Replies by: Anonymous, Butterfly74, ed williams, doragsda, chrispl1974

Hi I have recently been diagnosed as Stage 1a with depth of 0.7mm, no ulceration and zero mitosis. But my Clark Level is 4 which I am so worried about. From everything I have read this is a high risk factor for it spreading at some stage. I probably shouldn't read so much on the internet as it makes me so anxious and I am really struggling to deal with everything. There seems to be a lot of people who were stage one and are now stage 3 and 4. I'm hoping some people can help me please.

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MMH's picture
Replies 1
Last reply 4/21/2020 - 7:31pm
Replies by: tedtell1

Having trouble getting through to my derm likely due to pandemic. Had blotch on face earlier this week of concern but that is nothing now that I awoke to a red nodule near my original scar. My original melanoma was a Spitzoid, amelanotic and similar to what I am seeing now although this spot looks more red and nodular to me. As you can tell, I am beside myself. Is it possible to have a nodular melanoma pop up near old site that was not
Nodular? Trying to catch my breath.

MMH

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Redstar.20's picture
Replies 6
Last reply 4/25/2020 - 11:48am
Replies by: Redstar.20, maryb-z, Bubbles

Hello! So a little background, first diagnosed with malignant melanoma 3yrs ago, came back in January. Habe had surgery and I stage IIB, intransit metastatic recurrence. I started Opdivo infusion March 20th. My oncologist wanted to focus on the sunshine and roses of Opdivo, as most people on Opdivo have little to no side effects. After the first round of treatment, I had rash from chest to face, all over deep tissue itching, exhaustion, muscle aches, swelling in hands and joint pain in hands, at times there was shooting pain down my arms and legs with on and off numbness/tingling, swollen lymph nodes, and hair thinning. All of these side effects were livable, and I treated the symptoms. My best week was the fourth week, the week before my next infusion. At my infusion the oncologist and I decided to try doing a half dose to see if lessened the side effects. About 4.5 hours after completeing infusion number 2 I became very hot, sweating, clammy, shaky, dizzy, headache, nauseous, head spinning. After lying down for about an hour my side effects eased up a bit so I knew I didn't need to go to the ER. The next day I was still experiencing the headache, nausea, dizziness, head spinning so I reached out to the oncall oncologist, and we decided to try treating the symptoms instead of doing prednisone that would cancel the Opdivo effectiveness.
The anti-motion sickness medication helped take the edge off, and I felt better as long as I did very little.
Today I called my primary oncologist to get a prescription for something strong, so I could work etc. My oncologist said she could write a script for the nausea, but she is concerned that if we treating the side effects and continue with the Opdivo, that next time I could have an even worse reaction and that may be we shouldn't go forward with the infusion. I am at a loss. Are there other alternatives to treat the cancer? Has anyone experienced these kinds of reactions on Opdivo?
Could use some advice from experienced cancer warriors.
Thanks

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MMH's picture
Replies 1
Last reply 5/6/2020 - 5:26pm
Replies by: SarahBug

Hi all. I was diagnosed Stage 1A in August 2018. I am constantly worrying, and try to channel that worry into vigilance. As you know, this can be exhausting. I have a new spot on my face and it does not look good. My initial melanoma was on my right arm, spitzoid, so amelanotic, looked more like a wart or pimple. Now I have something on my face that looks somewhere between an age spot and a slightly raised wart. So, the panic has set in. I am trying to get into my doctor at Johns Hopkins but I am worried that during the pandemic this will be challenging. Does anyone have experience with melanoma on the face, and if I had a prior that was amelanotic should I expect that for future melanomas that arise on my body? Thank you, these are tough times and I hope you are all hanging in there physically and emotionally.

MMH

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Sdmotorcop's picture
Replies 2
Last reply 4/22/2020 - 5:55pm
Replies by: MelMel, Bubbles

I unfortunately made the jump from 3C to stage 4 last week (mets in my lungs, lymph nodes and the psoas muscle). I had a 4.3mm removed from behind my left knee last april. I had one lymph node that had meI in it and started nivo once a month in June. I had a pet scan in December that came back clear. Only side effects I had from the nivo was fatigue and polymyalgia rheumatica like symptoms (extremely sore shoulders, upper arms and hips). My rheumatologist had me do an mri on the off chance I had joint issues. I’m glad she ordered it, otherwise it would have been another month and a half for my next scan.

My oncologist is gonna start yervoy along with nivo at my next nivo infusion. I’ve read about joint pain / issues while on the yervoy/nivo combo. I guess my question is for anyone who had the joint issues / pain while on the combo. How debilitating was the joint pain? I’m used to the joint pain from the pmr, I’m just wondering how much more the combo will heap on..

Bruce

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