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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kluft's picture
Replies 5
Last reply 2/15/2015 - 8:12am
Replies by: Anonymous, sharebear

On Friday I wen to my new oncologis for results of my latest PE scan and the results were not at all what we expected. After 4 doses of Anti PD1 drug Keytruda my cancer has spread.. So frustrated. Now recommending I take Arbrane (chemo) to stablize the cancer till a clinical trial opens at SCCA . I felt so blindsided that I forgot to ask about the trial. Has any used Abraxane ?? What were the side effects. 

 

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RGal's picture
Replies 2
Last reply 2/14/2015 - 11:01pm
Replies by: ncdaniel

My father's melanoma spread to his lungs, multiple lung nodules that are now causing him shortness of breath quite easily.   He just started a clinical trial of an inhibitor and and anti pd-1 drug.  I'm worried about his lungs failing before the immunotherapy starts to (hopefully) do it's job.

Has anyone had a similar diagnosis?  

 

Thank you!

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Hi, I have been doing a lot of looking on this site and the web to get a better understanding of Radiation Necrosis vs Melanoma issues. I am much appreciative of the great info shared by other warriors in this battle. JoeyB had some really helpful info on RN that I thought I was going through. Hoping to hear his recovery is underway. My situation just took a different direction today after meetings at MSK in NYC.  Since my stage 4 diagnosis in zag 2011- two Yervoy series of 4 infusions, a bunch of SRS radiation sessions and a tumors removed from lower left lung lobe in August '11 and then the temporal lobe in Sept '13  was feeling pretty darned optimistic that I had the beast beaten back. Perhaps I am overly optimistic or just fooling myself but it's just the way I try to roll in life in general. My last SRS in June 2014 for a new tumor on the brain dura seemed like the SRS worked as of my Nov 2014 scan. Shortly after my clear Dec '14 body scan I began getting dull headaches which progressed to more painful ones signaling something was amiss.  I went in on Jan 27th for a brain MRI scan and Drs alerted me that it appears that the radiation necrosis call made in Nov was in fact more likely a melanoma  recurrence and they jointly decided ( my onc, radiation onc and surgeon) that given my tumors resistance to the usually effective SRS they want to get aggressive and remove it..  

I am bummed a bit that this isn't just some delayed radiation related swelling that steroids couldn't just solve but glad that they are deciding to get aggressive and go for a surgical solution. My recovery from the first craniotomy was really good so I am hopeful that the second time around is as fast. I am scheduled to get my surgery on Feb 10th.  Guess I'll be sitting down with the kids (16 and 14) and gingerly walking them through an edited version of what's going to happen. They were only 13 and 11 when I had the first brain surgery so I just told them I had a pressure spot I needed to get removed and I was hoping this would all just go away. I didn't want to scare them that young but I think I'd be remiss if I didn't give them better direction this go round.  Any suggestions on that discussion would be welcome. 

I guess this recurrence means my hopes of being a Yervoy responder might be out the window? Maybe so but I got lots of fight left in me to figure out my plan of action. Hopefully next weeks surgery buys me lots of time( forever hopefully) to think this through. 

Best of luck to everybody as we all face our respective challenges! 

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AshleyS's picture
Replies 5
Last reply 2/13/2015 - 2:41pm

Alright. I'm extremely frustrated. I've shared my story before, so I won't go into all the details. Here's the "need to know":

 
- Stage 1 diagnosis in August 2013 at age 29 following daughter's birth. 1.95 mm lesion on left calf ; skin graft. Sentinel node biopsy/PET showed nothing. 
 
- 1 new melanoma on back in November 2013; .45 mm.
 
- Found enlarged lymph node in July 2014 while 20 weeks pregnant. Biopsy showed metastatic melanoma. Lymphadenectomy at Mayo Clinic, MN; 15 nodes, 3 metastatic. Removed No PET because of pregnancy, but MRIs showed no other signs. 
 
- PET in December 2014. Metastatic evidence on liver, right shoulder blade, lower lumbar, and left hip. Head MRI = clear. 50 gene panel = NRAS (61). 
 
- Mayo came up with chemo (Taxol/Paraplatin) as treatment. Their justification was to slow growth before Yervoy. NP in charge of my case does specialize in melanoma but is a NP. 
 
- I contacted MD Anderson. Got referral approved. However, they said they didn't want me down there until 4 weeks after chemo was completed. 
 
- PET today at Mayo. New liver lesions, but no growth on other liver lesions. One new tumor on chest and slight growth to other tumors. NP is switching me to Yervoy. Keytruda next if ipi isn't successful. 
 
What do you all think? Would you continue with Mayo? Should I push to go to Houston (I live in North Dakota)? Mayo says Houston probably won't take me unless I start a trial...do you think this is true? 
 
I'm not in the medical field and feel so ignorant about all this. Any advice is appreciated!!!!

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clthomas2131's picture
Replies 4
Last reply 2/13/2015 - 12:11pm

Just recently diagnosed on  1/26 with Stage 4 melanoma. According to PET scan it is in my neck lympnodes and a small spot in 1 lung.  Found out today that I do have a BRAF mution of L597P which from what I was told is extremely rare... 

First oncologist said he wants to do neck surgery and start me on pill therapy.

Went to second opinion today at Cancer Center of Excellence(UAB) and met with an oncologist that specializes in melanoma today. He is sending me for a head MRI and a ENT visit to rule out any other tumors but suggests due to the BRAF mutation most of current treatments would not do me any good because of the type of mutation I have. His suggestion is no surgery at first, but to start an IV treatment due to my age and health and assuming nothing going on in my head he suggested we could go into a trial and be aggressive and do Yervoy/Interferon ( aggressive) or Yervoy/Avastin( middle of the road) or just Yervoy.  He said if I had surgery first with recovery time it would put off treatment and I could have more tumors pop up while we are waiting...  

 

Advise? Suggestions? Questions we should of asked? 

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Has anyone else diagnosed as Stage IV with brain mets had flushed skin with prolonged blanching? We had our four week post SRS check yesterday and the Radiation Oncologist took an interest in it. He is the one who had prescribed Dexamethasone for brain swelling  after the SRS, so had it been due to the steroids I think he would have mentioned it. I've asked my husband to check with his Primary Onc but he's hesitant. We start Yervoy on Monday. Thoughts? Thank you. 

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staylor's picture
Replies 3
Last reply 2/12/2015 - 12:48pm

I am 3 weeks post op from a melanoma removal.  The area is just below my knee.  The skin graft did not take.  How long will it take this area to look normal and heal?

Suzanne

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I need to get an elderly Lady in

Laguna Hills, CA in contact with someone that can help her get a referral from Kaiseer to A melanoma specialist at UCLA..  Her Kaiser Onc told her that she stands no chance of survival with mucosal melanoma and that Kaiser will not refer his patients to UCLA for opinions nor treatment.  This lady has not even had the WLE yet.

 

 

I'm me, not a statistic. Praying to not be one for years yet.

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clthomas2131's picture
Replies 7
Last reply 2/11/2015 - 3:03pm

I have been lurking on this board for a couple weeks now and finally decided to post... I was diagnosed on 1/26 by my ENT of having stage 4 metastatic melanoma over the phone no less... Back before Christmas I was hit with a stomach bug that went around our whole house. Over the course of the weekend I took it easy and then got up to head to work on Monday and found a swollen lympnode in my neck.. 3 visits to different doctors over the next couple weeks for antibiotics and steroids and was told if it is there when you get back from vacation see an ENT. No one seemed concerned at all, no other symptoms. Even at ENT she did the biopsy and with no symptoms she was thinking infection, something minor. Well after she gave me the news I had my first visit to an Oncolgist and went in for a PET scan. According to the oncolgist my nodes in my neck lit up as did a real small spot in 1 lung but said it may be nothing at all. He wanted to send me for surgery on my neck before we discussed other options. I decided to get a second opinion at a Cancer Clinic which I will have this Thursday... With a wife and 2 young girls at home I am lost on what to do...All I have to go on is "google" and frankly that is scary and depressing. I am the one who supports the house and carries the ins so we are lost..  Any advice? Questions we should ask? Anything postive to go on?

 

Thanks!

 

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yazziemac's picture
Replies 3
Last reply 2/11/2015 - 8:59am
Replies by: yazziemac, Jubes, joelcairo

Hi everyone

I am wondering what Stage 4 people's experience has been in qualifying for travel insurance?  My husband, Pete, has been inquiring with our insurance carrier but it has been hard for him to get straight answers.  How do others cope with this situation?  The idea of never being able to fly out of the county together again is very hard for both of us to accept.  Especially because we live in Canada, which is very cold in the winter!  Any advice would be most helpful.

Thanks in advance,

Yasmin

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ashlee12's picture
Replies 2
Last reply 2/11/2015 - 7:58am
Replies by: ashlee12, Janner

So today was my follow up appointment from whe. I was diagnosed with melanoma in situ.. So I had my check and he said everything looked good... Well now I've been moved to appointments every year... Which suprised me .. I know if I see something weird I'll go in but idk is that standard??? 

 

 

I have have an anxiety disorder and I'm nervous about a new melanoma pooping up .... Any advice or anything you know what new melanomas???

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csellers23's picture
Replies 6
Last reply 2/11/2015 - 4:25am

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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Jsneathen21's picture
Replies 11
Last reply 2/10/2015 - 11:11pm

For some reason I am overwhelmed with my skin graft it is causing me to cry just looking at it... I know it sounds weird but it just does it to me .. I'm not sure of this has happened to anyone else? Or maybe I am the only one who thinks it looks very disfiguring... It's only been two weeks of healing and it just looks so horrible and looks so deep ! and I can't help but cry when I see it! Is it stupid to get counseling for it? Do I need it? Please tell me how you delt with it! Thanks❤️

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Jen P's picture
Replies 5
Last reply 2/10/2015 - 11:05pm

My husband (Stage IV) has been on the taf/mek combo for a couple months. We just got scans yesterday and while the tumors shrunk dramatically, two "new" small tumors showed up on this scan in addition to one small one on hip and arm.  Has anyone had a "mixed" response on the combo?  Our onc thinks maybe these new tumors showed up in the 2.5 weeks after the first scan and before we started the combo.  Thanks!

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