MPIP: Melanoma Patients Information Page

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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Buddy0513's picture
Replies 2
Last reply 1/24/2017 - 6:56pm
Replies by: Buddy0513, Polymath

Hello everyone,

My mom finally got her scan results (for the most part) after a long weekend. Since the nurse called us at home I don't have all of the details other than they said swelling has gone down. There is no swelling in her lymph nodes (I guess nothing in the lymph nodes?) and that no new activity was reported anywhere. I am assuming they mean swelling in the abdomen area related to the tumor and that the tumor has shrunk, but is still there, making her stable at the moment (I really didn't expect the almost cantelope size tumor to just vanish). 

So this was really good news! I am not entirely sure what that means for stability wise a few months from now since the nurse did not mention NED (or if she can even attain NED later?), but she is scheduled to continue Nivo once her prednisone mg is reduced (she had colitis recently ontop of the rash, but the steroid seems to be helping that).

Just wanted to thank everyone for the support along the way here. This board really has made a huge difference between life and death for my mom, especially choosing the right doctor and what we should be looking out for. Keeping all of you in my thoughts as you continue to kick melanoma butt!

Melissa

 

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jennunicorn's picture
Replies 46
Last reply 1/24/2017 - 1:11pm

Just got results from my PET/CT, first one since starting Ipi/Nivo, and the main area of concern was the groin lymph node that tested positive in October sending me back down the path of needing a better treatment plan... and that lymph node is now very small and very little uptake, so much that they believe there isn't much, if any, cancer in that lymph node anymore. Woo! Happy birthday to me!

I've been dealing with fevers nightly for over 2 weeks (slowly getting better and less intense) and feeling pretty crappy, so I expected to hear there were a lot of reactive lymph nodes.. and yes, a bunch. My neck, clavicle, chest, armpits, abdomen.. basically all over my lymph nodes are pretty pissed off. But, all looking reactive. My spleen is a little enlarged as well. Liver enzymes are 3 times the norm so my first Nivo only infusion was cancelled today.. next one is in two weeks.. so hopefully this extra time will help my body calm down and not be so mad at me.

Tumor board will still review my report tomorrow, just good to get lots of good doc's opinions and see what they think too. The only area they might want to investigate again would be my left armpit lymph node since that was another one that was questionable back in Sept and it's grown since then. But, I won't worry about it if they don't bring it up.

My 30th birthday is on Saturday and I'm ready to just feel better and start the next decade of my life!

 

question: This might be a silly question and I can just email my onc, but I am having a birthday party next weekend and it's a wine and cheese theme.. because those are my 2 favorite things... but, with my liver being a little angry, is it safe to have some wine?

 

Jenn -  IIIC - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Patina's picture
Replies 3
Last reply 1/24/2017 - 1:06pm
Replies by: Anonymous, cancersnewnormal

A recent article in Cell Metabolism showed that BRAF V600E mutation will grow faster in response to a high fat diet.

I've heard something similar to this reported before and my Mom's doctor had recommended reducing glutamine, if possible. - My Mom didn't try it.

Another article: Right on Target: Glutamine Metabolism in Cancer

 

 

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sweetaugust's picture
Replies 7
Last reply 1/24/2017 - 12:16pm

Hi there,

Just wondering if anyone out there seems to have developed joint pain and rash patches on the skin that could be psoriatic arthritis as a side effect of Pembro (Keytruda)?  I've been on Pembro for almost 4.5 years now for my stage 4 melanoma.  Last year I developed a rash patch on my scalp that itches and burns and joint pain that has never really gone away over the past year.  I'm worried that if I continue on the drug, that the joint pain and arthritis will only get worse and will not be reversible.  Thoughts?

Have any of you been on Pembro (Keytruda) for this length of time and what are your doctors recommendations for length of remaining on treatment?  What are your side effects this far out?

Have any of you come off Pembro (Keytruda) and the cancer has returned?

Thank you so much and all my best,  Laurie

 

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sarah.brannon's picture
Replies 1
Last reply 1/23/2017 - 11:51pm
Replies by: Christinad

I finished a year of Interferon 09/30/16. Since then, no periods. My cycle was normal while on the medicine, but nothing since. I thought maybe I was in early menopause, especially since I was having (severe) night sweats and hot flashes. My gynecologist (specialty is cancer in reproductive organs) prescribed a birth control pill with a higher estrogen amount to help with symptoms, which it did.

Got the bloodwork back today, results via phone call, I am not experiencing hormonal menopause, but that it could still be an ovarian problem...

Has anyone else experienced this?

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Chelle19's picture
Replies 5
Last reply 1/23/2017 - 8:08pm

I had a mole on my upper left arm that I had been suspicious of for a few years now. I have had moles removed before for cosmetic reasons and dont know why I never requested this one to be removed. For years people have been pointing it out and saying I should get it checked. Multiple doctors looked at it and would say its fine even though I would say I think it's getting bigger. I  wish I had just followed my gut instincts and had it removed but too late now. I had been meaning to get it checked for months and finally did early January when I was at an appt for my severe anxiety and depression. Again I swore that it was getting bigger. This time my doctor said we would biopsy it and referred me to another doctor in the clinic.

Long story short he referred me to a dermatologist but it was a 3 and a half week wait so I went back into his office and requested he remove the thing entirely and he books me in for a couple days time. Looking at it he said it is probably only 10% chance melanoma but best to get it removed if I'm paranoid. A week later I go in for results and it's melanoma. ( I kinda knew though as I had missed the appt and they rang me to tell me I needed to come in. I was told by my original DR they had got it all and I requested the pathology report to go over with my brother in law who is a surgeon. ( So glad I remembered to get the report before I left or it would of been a long night of horror not knowing exactly what I was looking at ) From the report they hadn't got it all. The next day I went back to the gp who removed it to get a referral to a melanoma clinic as my brother in law suggested and he told me it was in situ. I had to tell him, no it's invasive... clarks level 3. He didn't know what a clarks level was, I googled it for him. He didn't give me the right referral and I have to go back again tomorrow and try to get the right one. I found out Friday night and have been sick with anxiety, cant sleep... just dozing off here and there and waking up startled believing I'm dying. The report is pretty good, it's the regression that has me sick with worry and the fact there is still tumour in my arm. I have also had symptoms the past few months that are not normal for me that I have googled and of course it's cancer to the internet. I also have a sore right armpit presently so I'm  terrified. Over the past few days I have spent my time on here reading posts. I know I should stay of the internet but this site has helped. Sorry for the babbling, with my anxiety I tend to over share lol

Here is my pathology report.

Diagnosis:
Skin excision, left deltoid:
- Superficial spreading melanoma, 12 mm
- Clark level III, Breslow thickness .47 mm
- No ulceration; mitotic rate less than 1/mm2; ( insufficient intradermal tumour for proper count )     -Regression present
- Peripheral margin involved

Host immune response: Present
Regression: Present

Microsatellites: Absent
Vascular Invasion: Not identified
Perinueral Infiltration: Not identified

Predominant cell type: Epithelioid
Desmoplasia: Absent

Association with a coexistent Benign Melanocytic Lesion: Absent

Margins of  Excision:
-Tumour extends to superficial
-Deep excision margin 3 mm

Thanks so much for your time

Michelle :)
 

 

 

 

 

 

 

 

 

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Is anyone in need of these amazing drugs? They are incredibly expensive and very effective. I have two bottles with only one dose taken from each, I'm pretty sure. I have kept refrigerated. I refuse to throw them out.

Please, if someone needs, let me know.

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/23/2017 - 7:50pm

Hello,

The last time I am reading a lot about melanoma, because my boyfriend has a family history of melanoma and he and I want to stay on top of things.

So I understand 50% of all melanoma's develop from pre-excisting moles, and the other 50% out of new moles. So are this new moles immediately melanoma or is it always first a atypical mole to some degree what will eventually develop in melanoma?

I saw that there are a lot of people on this forum who are having a lot of knowledge about melanoma, so I hope I can get some answers.

All my prayers to you who are battling this disease, I wish you al the best!

 

 

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iskitwo's picture
Replies 4
Last reply 1/23/2017 - 3:26pm
Replies by: iskitwo, V12superleggera, jennunicorn, Anonymous

I had my first round of scans and not totally what I was hoping for. The good part is there is no signs of mets in brain or organs. The scan did show an area of concern very close to the original surgery area on my back that was done in Oct 2016. The doctor is thinking possible melanoma in transit. She is sending me for sonogram and hoping to do an aspiration. I am currently at stage 3A would this up my staging if it is melanoma? Would I have other options for treatment besides Yervoy at the 10mg dose? Oh, also I am BRAF positive. Hoping to get an appt for the sono soon....Very Nervous!!!

Missy

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Just checking in to see how things are going?  Thinking of you both everday, hoping a plan of action has been put in place.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Spl25's picture
Replies 5
Last reply 1/23/2017 - 10:16am

I know a lot of people on here have done immuno and had reduction in tumor burden to the point where their tumors are localized to a specific organ. has anyone had a visceral organ resected at this point? what was the outcome? I'm not there at the moment, but hope to be, and would like to be able to have an informed discussion with docs if that point is reached.

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/23/2017 - 8:29am
Replies by: Anonymous, _Paul_

So short story, hubby stage IV, did 12 opdivo treatments that ended april last year.  Scans have been clear. Today, results of scan show "Activity", the doctor calls in it, in the nodes by the pancreas and activity in the intestines.  So need tests for those.  The doctor who is usually lighthearted was very serious in her speach and body language. 

Thoughts?  I dont know how to feel...

R

Bin

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/23/2017 - 7:46am
Replies by: Ed Williams, Anonymous, Janner

Hello

I am a little bit confused so I hope someone can answer my question.

Does melanoma always starts in the epedermis?

I know that some moles are also in the dermis. When they change in melanoma is it than immediately an invasive one? So it skips the in situ part?

I hope this makes sense (I am not a native speaker)

Wish you al the best

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iskitwo's picture
Replies 15
Last reply 1/23/2017 - 12:07am

This will be my first 3 month follow up scans and my first time to do scans at MD Anderson. It would be an understatement to say that I am nervous. Praying I made the right choice with wait and watch and the scans are clear. Does this scan process ever get any easier???

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julieod's picture
Replies 2
Last reply 1/22/2017 - 9:36pm
Replies by: julieod, Becky

Hello- I was just told this week that a mole my 7 year old son had surgically removed on 1/6 is either a spitz nevus or spitzoid melanoma. I am located in NYC. The biopsy is now at USCF with Dr. Bastian (who I've been reading is the best). I'm being told that they will likely do a CGH Array comparative genomic hybridization- which can take up to 3 weeks to hear. This seems crazy to me as I can't imagine it's good to have to wait long if there's cancer and for my sanity!

My son's dermatologist and surgeon have never seen SM and if it comes to that, I want to be sure I build the best team, although it's surprising to me it may not be in NYC. 

If anyone has any advice of anything else I should be doing, any additional testing I shoud be requesting, or any questions I should be asking, I would greatly appreciate it. I'm just feeling a bit overwhelmed and I want to make sure I'm doing all I can do for my little boy. I'm a kidney cancer survivor myself and trying not to panic, but want to ensure I am my son's best advocate.

Thank you!

 

 

 

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