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
glesch's picture
Replies 1
Last reply 3/9/2017 - 5:39pm
Replies by: J.bun

My husband was diagnosed with Stage 4 Melanoma in the Lung December 23, 2016.  MERRY CHRISTMAS TO US!!!   His doctor started my husband on Zelboraf and Cotellic on February 3 by February 19 he was taken off the meds for severe rash and diarrhea.  We started back on March 3 with a lighter dose of the same medicines.  By the afternoon the diarrhea and internal itchy happended.  Doctor took him off that evening.  We are now trying Mekinist and Tafinlar.  We hope these meds will be kinder.  

yes

GLesch

Login or register to post replies.

Lddaughter's picture
Replies 5
Last reply 3/9/2017 - 4:45pm
Replies by: debwray, Bubbles, Lddaughter, Mat

So my mom  got back that we are BRAF positive and we have a few more scans for her eyes, pelvis and heart. They want to start her on a S1320 trial. Honestly googling it I have a hard time interperating the results, facts and informations posted online. So I decided to stop. Has anyone heard of these? Is the BRAF Positive indicatior a good thing?

We had a great first meeting with the specialists where they want to work on pain management and then start treatments. The tests are to make sure she qualifies for this trial. I will tell you, a good specialist seem to make a world of difference. 

Any input would be fantastic. We still have so many questions but we know that is going to be the case for a good while. 

Thank you!

Login or register to post replies.

aquamak's picture
Replies 2
Last reply 3/9/2017 - 2:24pm
Replies by: NSNewf, jahendry12

Hello all, havent posted in quite a while.  I'll be going for my annual PET/CT scan in a week and a half (I alternate PET/CT and CT every 6 months).  Hoping for the best and if scans are clear, I will have reached the 4 year NED mark!  Hoping and praying!

Mela-No-More

Login or register to post replies.

momof4boys's picture
Replies 2
Last reply 3/9/2017 - 2:14pm
Replies by: CindyCo, jahendry12

Josh if you are checking in, I've been thinking of you. Wondering how you are doing? Hoping everything is well.

Login or register to post replies.

newmanmark's picture
Replies 12
Last reply 3/9/2017 - 11:31am

So I got some great news today!  After 3 rounds of the Ipi/Nivo combo my tumour has almost shrunk in half.  It was 5.7cm in October and is now 3.2cm.  Even though its not a complete response as I was hoping for, my oncologist assured me that this is a good response. The treatment has damaged my pituitary gland but that can be managed.

So now I have the option to continue with just Nivolumab.  I live in Canada so this is being done through a clinical trial.  Over the past few months I have read a lot about immunotherapy and there is an opinion that if I am getting a response then in theory my immune system should now be activated and will continue to fight the melanoma.

Initally I thought that I would continue on with the Nivolumab until it no longer works but now I question if this is the right decision.  If I do I run the risk of additional side effects.

For those of you out there currently on Nivolumab what convinced you to continue you on treatment for greater lengths of time?  Once you had a response, what was your oncologists opinion about proceeding.  I know some people have been on this drug for one year or even longer.

Thanks
Mark

Login or register to post replies.

Bobman's picture
Replies 9
Last reply 3/8/2017 - 9:51pm

I think  I  finally  got  someone's  attention . 

It's  taken a pound of flesh, and some changes  in providers  to get here, but I  am more confident  now than at any other  time on this wild ride. Getting  the biopsies  I  knew  needed  to be done has been like pulling  teeth  with a couple  of  previous  dermatologists ,causing  me to venture  into stroke territory  by resisting  the urge  to choke  the s#&!  out of them. But the 3rd one may be the charm. He calls me a "special  " case. Isn't  that special ?  Like music  to my ears. With hundreds  of lesions  on my body , I  do realize  that they're  looking   for that ugly  duck, but on me it's  not ugly enough  to catch the eye of the average  dermatologist . This guy trusts my judgment .  I assured  him I am not a masochist , and  if I  say it's  changing , it needs to go away. Of course  I  have all the pathology  to back me up,and I   have found  8 out the currently  10 melanomas . He wasn't  a believer  at first , but after his full body examination  last week , which was thorough , he said everything  looks "okay  ". I pointed  to my belly  and said how about taking this guy off right here. He said it didn't  look worthy , but would if it made me feel  better .  That was number  10. He called  me yesterday , picked my brain ,and was definitely  now intrigued . How sweet it is.

Epidermatropic  metastatic  melanoma . Word's  I  would  have  never  heard this life were it not for  this  forum .  A thoughtful  reply to one of my posts  awhile  back brought  it up ,when I was freaking  out about my 6th,or 7th,or 8th primary .  Known as the "InSitu mimicker " ,epidermatropic  metastatic  melanoma  is a very rare for of melanoma . Well  documented , I  started throwing  this big word around  trying  to get someone  to at least rule it out,since it's  criteria  is fitting  me like a glove these days . I finally  found  a pair of ears. Although  my dermatologist  has not heard of it,nor would  I  have  expected  he had...but now he's  curious . Since it is something  that can be tested , and ruled out. Toss in a couple  hot pet scans , a hot MRI from the past year,and I'm  off to the races!

What a relief ! 

Aloha , 

Bob

We are one.

Login or register to post replies.

Wife_WilliamR's picture
Replies 7
Last reply 3/8/2017 - 1:34pm

I have been a "creeper" on this page since 2010, but never posted.  Sorry we are all on here and have to meet like this!

In 2000 my husband William had a Stage I melanoma removed from the back of his hand.  In 2010 it returned to his elbow (stage IIIc), he had surgery to remove, 5 radiation treatments and tolerated 5 months of Interferon.  It returned to the elbow and small lung nodules in August 2014.  He had multiple surgeries on his arm.  He started Ipi/Opdivo combo trial at Johns Hopkins from December 2014 - October 2015 and although that seemed to keep his slow growing melanoma at bay it was not eradicating it.  Dr. Sharfman recommended we go to NIH for TIL therapy.  He received TIL during the month of February 2016 along with 4 doses of Keytruda.  Until November 2016 the small lung nodules remained stable, but started showing signs of progression.  Docs at NIH recommended the Urelumab/Nivolumab trial which would be back at Johns Hopkins for us.  We also went to Memorial Sloan for a second opinion with Dr. Postow who thought the trial was a reasonable next step for us.  William started the trial 1/6/17 and after 4 treatments the scans show minimal growth.  He is to stay on the trial and get rescanned 4/21/17.  If in April there is growth then they would remove him from the trial.  I am looking for thoughts on what would be next to try - he is BRAF negative but does have the NRAS mutation.  We have "heard" things like TVEC and chemo could be the next step.  I am the one who does all the "research" for William and am terrifed I am missing the best opportunities for him.  (We live on the East coast, but can travel for treatment.)  Thank you in advance for anything you have to offer!!

Login or register to post replies.

Dreaf01's picture
Replies 2
Last reply 3/8/2017 - 12:34pm
Replies by: Hukill, UBContributor

Hi all! Hope everyone is kicking Mels A**. I was diagnosed officially as Stage 1b on early Jan. After a wle and slnb, margins came back clear with negative nodes. Primary was 1.5mm on my right upper thigh, no ulceration, but 4/mm2 mitosis. Anyways over the last week I have noticed 3-4 hard little lumps in the middle of my upper abdomen. They almost feel rubbery and seem to move slighty. Could this be mets? I have also had some pain off and on, on my right side upper abdomen. I dont go back to see my surg. Oncologist until 4/5, and am wondering what doctor to call. Any advice would be appreciated.

Login or register to post replies.

daughter1's picture
Replies 1
Last reply 3/8/2017 - 12:27pm
Replies by: Hukill

I was wondering if you could help me. I have been reading number of "mets" and wonderful news about the immonotherapy.   My mother is a patient at Sloan.  She had a new cat scan and MRI done at Sloan prior to starting her opdivo/yervoy treatment.  

The scan came back with good news in the brain- nothing

but the liver had two large masses.

 Numerous bilobar hepatic metastases are

identified. Although differences in technique likely account in part for

the apparent change many more lesions are seen on the present scan than on
the previous. A 4.0 x 4.3 cm mass in the posterior right hepatic lobe
previously measured 3.5 x 2.8 cm. A 5.4 x 4.1 cm mass previously measured
5.4 x 3.5 cm. Tumor likely invades through the hepatic capsule. Additional
numerous lesions are now evident that were barely if at all perceptible on
the previous examination. No intrahepatic biliary ductal dilatation.

 

My question is this-  it seems as if this is all over her liver.  Providing this combo works, can it truly shrink these masses after only 4 treaments?

She is doing very well with very little side effects. just fatigue so far.  

I am just confused because I read all these promising stories but they all seem to refer to "mets" and have heard very little about "masses"

is it the same thing?  how do you all know the number of mets?  

Login or register to post replies.

CindyCo's picture
Replies 12
Last reply 3/8/2017 - 9:45am

Today Dr. Ribas told us that immunotherapy is not an option anymore for my mom.  After getting hepatitis and colitis from one dose of ipi/nivo, then high liver numbers from one dose of keytruda, he does not think her body is able to take immunotherapy.  He is planning to have her start Abraxane next week, which is a chemo.    A quick search of this forum shows that not many people are on Abraxane and it's mostly offered when there aren't many more options. It also looks like a lot of clinical trials will be out too, since most are immunotherapy based.

I'm afraid to ask, but can anyone share their experiences on Abraxane?

Login or register to post replies.

Gene_S's picture
Replies 2
Last reply 3/8/2017 - 9:15am
Replies by: raun cesar, Scooby123

Speaking of cancer, MSG makes melanoma, brain, breast, thyroid, and colon cancers practically incurable. It endows cancer with super powers.

Dr. Blaylock describes how MSG fuels cancer growth…

Cancer cells have glutamate receptors. When exposed to glutamate, tumors grow much faster and invade more aggressively. A patient’s prognosis for melanoma and squamous cell carcinoma of the throat is directly related to the number of glutamate receptors.

If you have ANY of these kinds of cancer and you eat foods with MSG, you’re pouring gasoline on the fire.

http://links.cancerdefeated.com/a/746/preview/2800121/686758187/058f6a9f...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Mikalias's picture
Replies 4
Last reply 3/7/2017 - 12:21am
Replies by: Mikalias, Anonymous

I was diagnosed with a rar form of melanoma on my right ear lobe stage 2.  It was biopsed and removed and just below it they took out 3 centenal lympth nodes but 6 months later a stage 4 tumor apeared right below where my ear lobe used to be that ws atatched to my parotid gland.  The Oncologist told me I had 5 months to live with chemo but I told him I was having extreme pain becuase the tumor was pushing against my arotid gland so he sent me to have radiation treatment and that solved the pain problem but it did not get rid of the tumor.  When I came back after the radiation treatment (month later) the oncologist told me that Kiaser had approved of a new treatment called immunothearapy and promptly put me on Yervoy and after 4 treatment all the tumors (11 in my liver, 7 in my lungs, and one inside my bone on my right shoulder) were reduced to inactive lesions or what he called photopenic which I think means totally gone. My primary was still there and the question I have is, does radionion treatment on the primary caused it to be immune to the Yervoy treatment?  After two years i'm now back on immunotherapy becuase there is 3 leasion on the liver that are starting to light up on the combined pet/ct scan and he is now giving me Keytrudia.  after 3 treatment the 3 tumors are getting smaller but the primary on my neck is still the same size and I have a possible new tumor under my right jaw on the neck so it looks like the Keytrudia wont work on tumors that are received radiation treatment and the mets from that tumor are possibly immune also.

 

Any comments? 

 

Login or register to post replies.

aziza's picture
Replies 4
Last reply 3/6/2017 - 10:15pm
Replies by: Anonymous, aziza, CindyCo, Bubbles

I am quite new here.

We are Thai and live in Thailand.  My mother, aged 77, found a breeding so she went to see an OB GEN doctor on January 13, 2017, at a small hospital. She had a biopsy and a results shows a malignant mucosal melanoma. She was referred to an OB GEN doctor at Chulalongkorn University Hospital. The doctor confirmed that the melanoma is at vagina and cervix. Not sure it started from cervix or vagina.

She had an operation on February 6, 2017, removing her ovaries, tubes, uterus, some upper part of her vagina. However, the doctor said he could not remove all dark spots in her vagina that he found during the operation.  The specimens have sent for more biopsies for BRAF and blood test for MSI. 

She will have a radiation (external beam) next week, which will last almost 7 weeks.

Melanoma is such a rare case in my country.  Mucosal Melanoma is even worse.

In case you have a similar case to my mother's, please advise me in what treatment that works well. Or if there is other methods that work, please let me know. 

I also have biopsies results.  Can I post them here? So you can help me.

Login or register to post replies.

Today Dr. Ribas told us that immunotherapy is not an option anymore for my mom.  After getting hepatitis and colitis from one dose of ipi/nivo, then high liver numbers from one dose of keytruda, he does not think her body is able to take immunotherapy.  He is planning to have her start Abraxane next week, which is a chemo.    A quick search of this forum shows that not many people are on Abraxane and it's mostly offered when there aren't many more options. It also looks like a lot of clinical trials will be out too, since most are immunotherapy based. 

I'm afraid to ask, but can anyone share their experiences on Abraxane?

Login or register to post replies.

Pages