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.

Expand/ Collapse Topic
 
Replies By
View Topic
JonathanB's picture
Replies 11
Last reply 12/27/2012 - 9:52am
Replies by: sFELDMAN, JonathanB, DeniseK, Anonymous, Swanee, jmmm, washoegal

I am a 47 year-old man, Stage IV, two young sons, determined to do everything possible to keep myself alive.

After a year of surgeries (primary excision on scalp, neck dissection, excision of various skin lesions), my latest PET scan from last week showed the melanoma has spread to my shoulder area and back of both legs (visible bumps), along with some yet to be determined small nodules in the lungs. My oncologist has run the BRAF gene test, determined that I qualify and wants me to begin taking Zelboraf (vemurafenib) this week. The question I have is: Should I press my surgeon to remove the visible turmors as quickly as possible, or should we wait to see if the Zelboraf is working, and ideally shrinking the tumors I can see protruding through the skin?

The information in this discussion forum has been invaluable to me and I sincerely thank all those who have contributed. The journey is difficult for all of us, but can be made easier by sharing helpful stories and information not always available from the medical community.

JonathanB 

Login or register to post replies.

Over the past couple of months that I have been reading the posts on the Forum, I have seen this question raised.  I came across a just published aritcle, or at least the abstract of an artcle, on the topic.  A read of the abstract makes me think that side effects from PI  would be more of a "bear," as one poster described them than conventional. The positives of PI seem to be linked to  its convenience in administration but not length of application period.   A link to the abstract is below.

http://journals.lww.com/immunotherapy-journal/Abstract/2013/01000/Real_life_Experience_With_Pegylated_Interferon_and.7.aspx

Login or register to post replies.

Josh's picture
Replies 6
Last reply 12/28/2012 - 6:17pm
Replies by: Josh, DeniseK, dellriol, Erinmay22, Anonymous, washoegal

Hello All,

There's a lot of serious talk here about serious symptoms, serious side effects, and serious outcomes. I'd like to share a more frivilous side effect if I may.

For about a year, I was on Zelboraf, and perhaps 6 months after starting the drug, my feet bagan to look really dry and, frankly, gross. For some reason, I didn't associate this with Zelboraf, simply thought that at forty years of age, I had turned into a man with very ugly feet. Having stopped Zelboraf two months ago, I'm pleased to report that my feet are once again gorgeous. Seriously, you've never seen such sexy feet. The moral of this story is that if you're on Zelboraf and your feet are disgusting, don't blame age or your moisterizer or even God. Blame the drug.

And a happy holiday to all!

Josh 

Login or register to post replies.

mama1960's picture
Replies 5
Last reply 12/25/2012 - 1:26pm

I am so thankful to able to spend another Christmas with my family! I am recovered from surgery and feel really good. I hope every patient and caregiver affected by this terrible disease has the best possible holiday.

It is what it is.

Login or register to post replies.

mom.of.2.littles.MIS's picture
Replies 1
Last reply 12/25/2012 - 9:32am
Replies by: buffcody

Hi there

I am new here.

 

I was diagnosed w. Melanoma in situ 10 days ago, on my neck and was able to have a wide excision done the same day.  The margins came back clear.

 

So I thought phew....

 

well 10 days later, I just happened to feel a palpable lymph node the size of a pea in my posterior cervical lymph nodes.  This is just 2cm or so away from the edge of my incision.

 

 

I am so nervous ;/

My derm said to wait it out a few wks 

 

I chose to go ahead and see my family dr and a gen surgeon who I have seen once prior for unrelated issue.  I will be seeing them both next Thursday (27th Dec)  I have a huge deductible, so I also wanted to get these appts taken care of as deductible was met, but who am I kidding, I am getting seen b.c I want to be thorough and I want to get it biopsied if need be....

 

I am not sure of what my questions are...

 

Does anyone think I am jumping the gun? I have 2 tots at home, I really feel like I want to nip this in the bud ASAP.  I also am not sure what I am wanting the drs to tell me this Thurs?  It seems so sketchy to me that it is so close to surgical site and to be palpable...I understand that it could be from post-op recovery from the MIS surgery/excision.  But I just am not sure.....Should I be thinking I will have it biopsied? or a scan? I have heard they can do CT scans? I am allergic to iodine, which means I couldn't use contrast, so I am not sure I could have that done.  What is the lymph biopsy like? Is there risk of spread when they remove the node? or risk of lymphedema locally??  I'm sorry for all the Qs, thought a patient perpsective would help me to think more clearly...

 

Anyone heard of this happening with MIS?  I know I am supposed to be happy that I was in the 99% clear range and I totally was until I accidentally felt this lymph node.  I have never felt a palpable post cervical node prior, I def have felt ant. cervical w. sore throat or allergies/sinus issues etc...

 

Thank you for taking the time to read

Any advice would be appreciated

Login or register to post replies.

mom.of.2.littles.MIS's picture
Replies 2
Last reply 12/24/2012 - 8:25am
Replies by: Janner, jmmm

Hi there

I am new here.

 

I was diagnosed w. Melanoma in situ 10 days ago, on my neck and was able to have a wide excision done the same day.  The margins came back clear.

 

So I thought phew....

 

well 10 days later, I just happened to feel a palpable lymph node the size of a pea in my posterior cervical lymph nodes.  This is just 2cm or so away from the edge of my incision.

 

 

I am so nervous ;/

My derm said to wait it out a few wks 

 

I chose to go ahead and see my family dr and a gen surgeon who I have seen once prior for unrelated issue.  I will be seeing them both next Thursday (27th Dec)  I have a huge deductible, so I also wanted to get these appts taken care of as deductible was met, but who am I kidding, I am getting seen b.c I want to be thorough and I want to get it biopsied if need be....

 

I am not sure of what my questions are...

 

Does anyone think I am jumping the gun? I have 2 tots at home, I really feel like I want to nip this in the bud ASAP.  I also am not sure what I am wanting the drs to tell me this Thurs?  It seems so sketchy to me that it is so close to surgical site and to be palpable...I understand that it could be from post-op recovery from the MIS surgery/excision.  But I just am not sure.....Should I be thinking I will have it biopsied? or a scan? I have heard they can do CT scans? I am allergic to iodine, which means I couldn't use contrast, so I am not sure I could have that done.  What is the lymph biopsy like? Is there risk of spread when they remove the node? or risk of lymphedema locally??  I'm sorry for all the Qs, thought a patient perpsective would help me to think more clearly...

 

Anyone heard of this happening with MIS?  I know I am supposed to be happy that I was in the 99% clear range and I totally was until I accidentally felt this lymph node.  I have never felt a palpable post cervical node prior, I def have felt ant. cervical w. sore throat or allergies/sinus issues etc...

 

Thank you for taking the time to read

Any advice would be appreciated

Login or register to post replies.

london22's picture
Replies 5
Last reply 12/27/2012 - 1:35am
Replies by: BrianP, Snickers60, vicuk, Swanee

I am the son of a woman, 63, diagnosed with melanoma. The melanoma is currently underneath the armpit and quite large (large marble). A CT Scan has come back clear although there is the smallest sign of cancer in the 8th rib. The Doctor has suggested Zelboraf for now. We are waiting for the drug to come through and may have to start a little chemo before we receive it (NHS UK). I am desperate for everything to be well. I lost my Dad when I was 15 and am 22 years old now. I am writing for support and advise about what we mght expect. I am unsure what stage my Mum should be placed under as it is ony in the 8th rib and not yet in any organs. I love her so much the panic sets in that I may be losing her. I need help and support from my new fellow warriors. 

Loved today and forever

Login or register to post replies.

DA Boston 42's picture
Replies 1
Last reply 12/23/2012 - 5:18pm
Replies by: NYKaren

Has anyone used Imiquimod with success? I think some people call it Aldera.
Thanks,
Don

Login or register to post replies.

DA Boston 42's picture
Replies 3
Last reply 12/23/2012 - 10:25pm

Hi everyone,
I used to take zelboraf and want to take it again.
I also used it when it was a clinical trial. I am of course BRAF positive.
Anyone have any thoughts about doing Zelboraf again?
Please respond!
Thank you,
Don Armstrong

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 10
Last reply 12/24/2012 - 8:59am

I didn't post often, but frequented the site to find helpful info. My mom passed away Friday evening after a 10 month melanoma battle. She was young, vibrant, giving, caring, so loving... I could go on and on. I pray for each and every one of you, patient and caregiver, and those of you who have lost a loved one to this horrible cancer. Never give up.

Login or register to post replies.

buffcody's picture
Replies 2
Last reply 12/25/2012 - 5:51am
Replies by: LynnLuc, POW

My wife the other night was rejoicing that I was now NED.  I said I thought that was not clearly the case.  I've only had one met to the body.  That was surgically removed, and my last PET scan was negative for any cancer.  But my last MRI showed me with two very small brain mets.  Both of those were "dealt with" by SRS, according to the onc, successfully.  Does successful SRS treatment of the brain mean that my brain is currently NED?  Guess that's my question before I claim the status. I know, despite being hit by SRS, you can still see something on MRIs in the area that was radiated.

Login or register to post replies.

POW's picture
Replies 11
Last reply 12/26/2012 - 1:14pm

My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z. He is now off Z for a 30 day "wash out" period and then he will either get into an anti-PD-1 clinical trial (fingers crossed) or he will try try Ipi. Both of these treatments are based on monoclonal antibodies.

My concern is that melanoma that is resistant to Z often comes back more aggressive than it was originally. I think I'm beginning to see signs that his brain tumors are growing already (slurred speech, extreme fatigue, unstable walk) although this could just be paranoia on my part. My concern is that his tumors will grow so fast that he won't survive the wash out period plus the 4-8 weeks it takes these antibody-based treatments to exert an effect. But, really, what choice does he have? Any hopeful stories out there? Any suggestions?

Login or register to post replies.

Marilynn Eiken's picture
Replies 9
Last reply 1/6/2013 - 5:51pm

My husband just had his second craniotomy with tumor resection because of a melanoma brain tumor that grew back in the exact same spot as the last one.  We were confident that it was necrosis and not tumor regrowth because all the perfusion studies were cold.  Black even, showing no blood flow to the area.  It was a huge disappointment to find out it was the melanoma again.  He's had an odd course.  He started with a skin lesion 3 years ago and then boom..brain tumor two years later.  No other issues.  We did WBR and gamma knife to spots that were missed.  Things have been going well but in November they found a very small liver lesion.  We were able to ablate the area and thought we were doing well.  December MRI showed more changes to the resected area and our neurosurgeon said lets get it our of there.  This surgery showed melanoma, about the same size as the first, it was visibly black and invading into a small portion of the dura.  Everything was resected but there is a black "film" that was visible following a vessel into the leptomenigeal area of the right frontal lobe.  Our neurosurgeon is wonderful and is heavy in the research department, especially immunotherapy, at Mayo in Rochester.  He is suggesting to our med onc to start Yervoy.  Tye is very frightened.  My favor is wondering if any of you survivors out there would email him.  He is not the type to reach out, that's my part in this marriage.  But I think he would benefit greatly from connecting with someone who is or has experienced this monster.  His email is tyeeiken@hotmail.com.  Thank you.  Keeping him strong and full of hope is essential.

 

Marilynn

Login or register to post replies.

Owl's picture
Replies 3
Last reply 12/22/2012 - 10:00am
Replies by: POW, Anonymous, sharmon

Dear all,

I posted a couple of weeks ago and got really good input from you, thanks again!

My husband only had a partial response on Ipi (mets in lung, testicle and subqs disappeared, mets in neck area, parotis and 3 lymph nodes in abdomen left and progressing). We had a lot of discussions with the doctors since then. In the last weeks we experencied that doctors are only humans, make mistake, don't look at the whole picture etc. Luckily we moved home and have changed treatment center, which is now Kiel, Germany. The doctors there have been very helpful and were willing to discuss any options possible. The result is that they don't trust in a reinduction of Ipi, surgery would have no real benefits as the risks are to high for facial nerves and surgents are sure that tumors will come back. Finally my husband decided to start Zelboraf as it was recommended by the doctors. So he did last Wednesday. They did another CT staging Friday as the other one was 4 weeks old. CT shows only one met in abdomen (same size as 4 weeks ago) but two others (that were mentioned for the first time in CT of November) of at least 10mm had disappeared. Neck and parotis mets are also the same. This sounds very confusing to us because we do not believe that Z lets two mets disappear in between 2 days and all others have not changed. Unfortunately CT wasn't done at the same place as in November, so there was no comparison done. Well, nonetheless we hope the Z works well and we will ask doctors to make the comparison in January in order to understand what is going on.

Most of you know how hard these kind of discussions are and we just hope some calm days next week with our little daughter. She just turned one last Wednesday.

Wish you a peaceful christmas time!

Jenny

Login or register to post replies.

Pages