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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JuTMSY4's picture
Replies 1
Last reply 7/17/2018 - 3:54pm
Replies by: ed williams

Looks like I'm back to NEAD/NED!  Got the final part of my CT scan yesterday and there's nothing there.  Plus, I've lost a little weight (on purpose) that's reduced some fatty tissue around my liver which makes things that might have been cancer far less conspicuous (they probably were never cancer as far as anyone can tell, right now).

We're going to keep "re-doing" pembro for probably 9 months, although my doc said she had my DNA sequenced since I signed off on a variety of research forms and that I might be a prime candidate for a small study on vaccines.  

https://www.nature.com/articles/d41586-017-08706-3

Not sure if anyone has ANY experience with this (looks like maybe 30 people have tried it in one study or another).  We're not sure if it's gonna happen or if I'm going to stop Pembro or pause it or anything.  I'll keep everyone posted!

-j

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skousal's picture
Replies 5
Last reply 7/17/2018 - 10:39am

Hello everyone, 

I wanted to see if anyone had personal expereince of getting pregnant during remission. I have heard mixed things from my onocologist, but I just found out I'm pregnant. I had stage 3a, and I am about 1 year and 8 months in remission. I only had surgery, no adjunct therapy. My last scan was June 1st with no evidence of disease. Any personal stories or expereinces would be greatly appreciated. Thanks!

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csellers23's picture
Replies 7
Last reply 7/17/2018 - 10:14am

Got first dose of keytruda. Wanting to know what side effects you got, the more doses you got. Did they get worse, how long till you knew it was or wasnt working also im on taf pill. I had mixed results with the taf/mek combo so they took me off that . but put me back on taf after new met were found on the brain and keytruda,, and did anyones tumors get bigger before they got smaller. I am haveing pain all o ver even with pain meds, even the bottom of my feet hurt! Worse in morning and right after i take pain meds but i d i nt know if its from taf ir keytruda. Thank you sorry for typos my phone is acting up.

Crystale

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Winterrothj's picture
Replies 2
Last reply 7/17/2018 - 1:16am
Replies by: obtu.bt, Bubbles

Well I just had surgery on the 22 June 1 spot on my middle right lung and 1 on the lower right lung it came back as melanoma cancer but have no other areas on my body that have cancer pet scans show nothing and dermatology can't find any skin cancer. Don't know what to think, never smoked or no drugs clean lifestyle.

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ed williams's picture
Replies 9
Last reply 7/16/2018 - 5:57pm

For any one that hasn't seen the news in melanoma yet today, those that are Braf+ have another option and it looks really good with great overall survival #'s. https://www.onclive.com/web-exclusives/fda-approves-binimetinibencorafen...

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iskitwo's picture
Replies 8
Last reply 7/16/2018 - 12:58pm

I have had 2 months of Nivo and did scan last week. I got the results this week and no new mets and currents spots are almost gone!! Side affects have been very minimal so far and praying it stays that way.

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brianm's picture
Replies 1
Last reply 7/16/2018 - 8:37am
Replies by: JuTMSY4

Hi,

I've had great response to my stage 4 mel.   Al I have left is a 4cm mass in my lung and a very shallow bump on my kidney.  They did a pet scan and the 4mm mass had an SUV of 4.5.   So here is my quesiton.

 

The 4cm mass used to be over 15 cm and have an SUV of 12.5 and greater.

 

Have any of you had large tumors that melted away but left some structure?   Does it always show up as active on the pet scan?

 

I'm only 7 months into my treatment, but it saved my life....

Thx,

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/16/2018 - 2:32am
Replies by: Anonymous

https://www.youtube.com/watch?v=SV4epXiKgrM

 

This is interesting. Dont know if you guys have notice that movie before.

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/16/2018 - 12:10am

Hi Everyone:

I would greatly appreciate any input to my decision making.  I currently go to UCSF for all of my treatment and see a melanoma oncologist.  I went to MD Anderson for a second opinion and I am thinking about having my treatment at MD.  UCSF is a 4.5 hour drive in the car with no traffic.  Plus everything is so expensive from the parking to the hotels.  MD Anderson is around 6 hours by plane.  I would be able to have my infusions at home instead of driving every 3 weeks to SF.  I would go to MD for scans and anything else that is needed.  My dilemma would be the oncologist where I live is not a melanoma oncologist.  Also, I am concerned about the distance and the time it would take  to get to MD if my diease would progress.  One thought is I could cross that bridge if it happens. I am currently stage IV and doing very well on keytruda.  If you are in a similar situation could you please provide some input.  Good, bad and indifferent.  I really want to make sure I am making good choices in my care.

Thanks 

Happyfeet123

 

 

 

 

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AndyZ's picture
Replies 6
Last reply 7/15/2018 - 4:57pm
Replies by: AndyZ, obtu.bt, Bubbles

Dear members,

I was chkecing my skin regurarly at a hospital that specializes in skin cancers and reassured me that everything was fine. I had a mole in my back which I scratched really hard and again they told me that is was nothing. I insisted and they removed it surgically but it split in half (they did not follow the protocol because they thought it was benign). They told me they could not see what it is because the mole was destroyed during surgery. Then they said it was melanoma but could not see the breslow depth. They finally said it was 1.2 with a 5-6 mitotic rate. I took it for a second opinion and they said it was 0,5mm with no mitotic rate.I had the sentinel node removed and said there was a minor inflitration. When I got the pathology report it said 2mm. I took everyhting to a melanoma specialist and her pathology report stated breslow the highest 1.1, 2-3 mitotic rate and ulceration due to scrathcing and not pathological. When she tested the lymph node she could not find any cancer cells but according to the hospital slide that made the initial biopsy on the sentinel node the maximum diameter was 0,2mm and not 2mm encapsulated. PEt scans, margins etc all clear.

They decided againd complete node dissection and have taf/mek for a year. Within a week I had severe side effects and even after reducing the dose, after one and a half month, I was hospitalised with liver and kidney damages, crp 12, LDH 456, haematocrit 27 and almost a destroyed immune treatment.

They stopped those drugs and now want to try an other adjuvant treatment.

I am really afraid and considering the observation option. I have heard all the experts opinion but it would help me to hear your stories and experiences.

Thank you in advance

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/15/2018 - 4:17pm

In October of 2017, I found a lump in my groin. It was removed, biopsied and diagnosed as malignant melanoma. More extensive surgery (the groin is an awkward place to have surgery!) removed a chunk of me with nine lymph nodes and four had melanoma. But 5 were OK!! I was tested - PET, MRI. CT and physical exam. They can't find anything, so my diagnosis is "melanoma of unknown origin" which is supposedly quite rare. Anyone out there have this?

I'm being treated with nivolumab (Opdivo) -monthly infusions, and to date I am experiencing very few side effects. I did end up with mild lymphodema of the left leg, but I don't even wear a compression stocking. At the six month mark, the doctor ordered CT of chest, abdomen and pelvis and all was well.

So much is unknown. I am afraid it is elsewhere and afraid it will come back. Most of the time I go about my business and kind of forget I have this. I had breast cancer in 2000, and in 2007 I had a totally different kind of cancer in the other breast. So, this is my third cancer. Enough already! Please pray for me. I want to attend my grandsons' weddings. They are 10 and 7 years old.

Ginny Richardson

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/14/2018 - 6:33pm
Replies by: Bubbles, ed williams, jennunicorn, Anonymous

Hello. Im F 25 and I was just looking for some advice. I developed a new mark on the tip of my toe atleast a year+ ago (I cant remember when exactly I first noticed it). It didnt seem to change until I picked at it thinking it could be a pen mark and formed a wound. Since its healed it seems to have increased in size. I spoke to several derms online and visited my gp and a derm in person, all of which have said it is fine. My concern is - can Melanoma often be missed using the dermascope? I have health anxiety so have spent alot of my time reading up on acral melanoma and I know how dangerous it is. I also read that new marks, ones which had changed or those over 7mm should be excised regardless of dermascope findings. Mine is all of those. It doesnt seem to be actively changing now which brings me to my other question - would Melanoma constantly evolve? Or does it reach a point where it can extend under the skin while the surface isnt changing as much anymore. 

Thanks so much in advance. Just wanting some other perspectives as I cant always trust my own opinions due to the anxiety :( I was going to ask for it remove for peace of mind but she didn’t want to due to the location and risk of morbidity. 

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MarkOasis's picture
Replies 2
Last reply 7/14/2018 - 3:24pm
Replies by: MarkOasis, jrtufo

Hello All,

I don’t usually post, so for my background, I was diagnosed April/May 2015. Nodular melanoma 4.5mm, top of left calf. Sentinel Lymph Node Biopsy positive at microscopic sub-capsular level and a staging of 3B. No additional treatment, doing watch-and-wait and have been NED for 3 years.

During the last month I was diagnosed with seminoma testicular cancer and had a “radical inguinal orchiectomy” to whip it out. Prognosis is very survivable and recent CT scan is clear of progression (actually scheduled for my melanoma follow-up). Part of the post-operative treatment for seminoma can be a few doses of targeted radiotherapy (relatively low dose), to reduce the risk of recurrence.

My question is: should I be concerned that the radiotherapy will hit my immune system and therefore increase the risk of a melanoma recurrence? Melanoma remains my most dangerous enemy. Watch-and-wait is also a valid option after seminoma but can depend on the characteristics of the tumour and I didn’t have that meeting with the doctors yet.

Thanks.
Mark.

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wendywjj's picture
Replies 2
Last reply 7/13/2018 - 11:46pm
Replies by: BrianP, wendywjj

I am a daughter and caregiver from China. My mum(53) was diagnosed with mucosal melanoma last October, she had a surgery with clean margin to remove the tumor but it came back two months ago and we are under immunotherapy ( Nivolumab +Ipilimumab ) now.

Since my mum has low TMB and PD-L1 expression, there are high chances that the immunotherapy would not work for her. In fact, in the first one month treatment the liver mestastisis grew so quickly that we need to have surgery again to remove that. That is why now I want to search for suitable clinical trial for my mum globally.

Researching on clinical trials now, but there seems a lot of trials in process. How is your experience with those trials? Do you have any recommending trials that eligible for someone not respond to immunotherapy combo?

Thanks!!

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BrianP's picture
Replies 6
Last reply 7/13/2018 - 11:29pm
Replies by: BrianP, mrsaxde, ed williams

This is a good summary of the trial I did in December 2016.  Unfortunately not recruiting now but hopefully will see it again in the future, maybe in some type of combination trial.

https://www.mdanderson.org/publications/cancer-frontline/2018/06/pioneer...

 

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