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
davidstewart's picture
Replies 3
Last reply 10/19/2015 - 3:02pm

I was able to sign on the the extended access clinical trial for ipi-nivo for melanoma right before the FDA approved it. I'd like to get treatment closer to home but am wondering about Medicare approval of nivo. Each of these drugs has been independently approved by the FDA (and Medicare), can I assume that Medicare will cover the combo now that they have been FDA approved?



Login or register to post replies.

Replies by: AnitaLoree, Patina

After 1 yr of apparent PFS on Keytruda, latest MRI shows probable enlargement of nasty mel remnant curled around my husband's cervical spinal cord. Oncs huddled & agreed likely new growth on tailend. No new neuro signs/symptoms---yet.

Only option is to switch to Opdivo/Yervoy combo, which we knew was down the road if.......   Only SE's on Keytruda: fatigue & itching. Didn't start w Ipi because initial tumor swelling common & no place to swell.  Now, out of options for his rare tumor location so will give it a run. (I'm silently) Very anxious re risk of swelling, husband calm, pragmatic.

Just reread Celeste's 9/27 post re: 'Sequential Nivo then Ipi w encouraging 41% ORR' that helped dry the tears (thank you C)

Will appreciate hearing from anyone who's done this switch, advice, encouragement (!!!)

(Husband is BRAF neg, s/p resection, radiation, tumor is non-biopsy-able, non-injectionable, Kaiser pt, but have very good Onc, on top of game, & had consult @ UCSF w Dr Daud---before starting Keytruda)

Blessings on you all, strength, and courage.  A.L.




Login or register to post replies.

Cynthia C's picture
Replies 1
Last reply 10/17/2015 - 12:51am
Replies by: Patina

How do you reply to a post?

I tried but got blocked as spam for no reason.


Login or register to post replies.

Hi Celeste 

i have been suffering with debilitating arthritis/myalgia since March. Especially in the mornings, I am unable to move even to turn on my side or bend my knees or even turn my head. It improves during the day and I lead my life ok but can't work or move very well.

 My oncologists have sent me to a rheumatologist who has sent me for every scan and blood test known to mankind (spine and shoulder mris, bone scans etc) so a diagnosis of arthritic spondylitis has come back. Now I have to go for another scan to confirm and more bloods and he has put me on ketoprofen on top of the 25 mg steroids I've been taking since March. Previous antiinflammatory (inza500) did nothing  

this rheumatologist is very scientific so he will not assume that my problem is drug related and wants to eliminate all other possibilities first (I was on keytruda for 11 months and stopped in August)

as there was sarcoidosis also found back last June when they biopsied my lungs he is going to try to treat this as pertaining to that condition first 

now I have have to see an eye specialist as he wants to try me on plaquenil ( in three weeks time) which should be effective if the sarcoidosis is causing the problem

Because of your kind suggestion in another post, I mentioned infliximab to him and he does not want me to have it as he says it causes melanoma even though it is the normal go-to drug for the sponylitis

so to my question to you: do you know of any cases where someone has taken infliximab and stayed with stable tumour or NED?

my gut feeling is that the pembro has  worked incredibly well, so well that my immune system has gone the other way, but the dr disagrees. He may be right as I really have not found one other person with these symptoms

best wishes Anne-Louise 



Login or register to post replies.

Rawlins Mom's picture
Replies 14
Last reply 10/16/2015 - 5:14pm

I've posted just a few times on this forum, but check often and read most all posts.  My mom was 74 years old, diagnosed with vaginal melanoma with mets to the brain at the end of May, 2015.  She passed away October 2nd.  

She initially had surgery to remove the vaginal tumor, but they were not able to get it all, and it had also adhered to her bladder.  She was immediately started on Keytruda, and had radiation treatments on both the brain met, and pelvic area.  (BRAF neg).  After 3 doses of Keytruda, the PET scan showed growth in all areas, and new lesions in the brain, lungs and bone.  She then went through whole brain radiation, and was put on the ipi/nivo combo.  After the 2nd dose of the combo, she began to deteriorate, and after consultations with all involved, hospice was called in.  She died 2 weeks after her last treatment.  

On a positive note, the only side-effects of all the treatments were some fatigue and lack of appetite.  Neither were severe enough to keep her from living her everyday life.  

I think about all of you often, and hope hope hope they find a cure for this horrible disease.  Keep up the fight!

Login or register to post replies.

Adam-MRF's picture
Replies 1
Last reply 10/16/2015 - 2:01am
Replies by: AnitaLoree

Hi everyone,

Big news! This morning Apple, Inc. announced new technology that will directly connect thousands of people to melanoma researchers and offer a new tool for melanoma early detection. Using Apple’s Research Kit, developers have created an app that allows users to record and track moles as well as the option to send that data directly to melanoma researchers. While participation in studies has traditionally been limited by geography, research data can now easily be shared by users of almost any location, age or condition of health. It's very encouraging to see a large, international organization like Apple join the fight against melanoma! More information is available here:


Adam - MRF

Login or register to post replies.

geriakt's picture
Replies 5
Last reply 10/19/2015 - 5:23pm

Has anyone experienced lower back pain while taking Opdivo or Yervoy?


Login or register to post replies.

brewgirl68's picture
Replies 1
Last reply 10/16/2015 - 2:20pm
Replies by: momof4boys

Good morning -

This maybe a silly question, but does anyone know of a correlation between complete lymph node dissection and increased severity of cold/flu? I had all nodes removed from my right axilla in February - IIIc, unknown primary, no Interferon; since then, I have been sick twice (not unusual) and both episodes have been MUCH worse than ever before. Specifically, fever...just can't shake it. Anyone else?



Login or register to post replies.

Anonymous's picture
Replies 15
Last reply 10/18/2015 - 3:46pm

Hi, I'm new to this. My husband has just recently been diagnosed with melanoma stage four. He has 4 lesions on his brain. I am looking for survivors of this. He is only 50. We have 3 small children, 1-8. Please good or bad I want to know if anyone had mets on their brain.

Greg and Elisabeth 

Login or register to post replies.

Birdlo's picture
Replies 15
Last reply 10/21/2015 - 12:50am

Hi everyone,

This summer I had a mole removed on my ankle at my annual skin check and it came back as a thin melanoma. 0.58mm (later measured as just 0.45mm by a dermatopathologist at U of Utah), Clark level 3, with no other risk factors (no mitosis, ulceration, regression, etc). I wasn't entirely surprised as my mother had a melanoma removed from her ankle years ago (and never looked back, no other issues, no node biopsy, etc)

I travelled to Huntsman cancer center in UT (I live in Idaho) to have my WLE and opted for a SLNB to rule out the "3%" chance that it had spread to my lymph nodes. Well I am in the 3%. I have a new perspective on "low risk". 

Result of my surgery was clear margins, and 1 lymph node (out of 4 removed) with 3 "Melan-A" cells present. 3 cells!! I have been upgraded to stage IIIA. I'm having my body scans this Friday. And my next decision is whether to have the CLND. My surgeon, Dr. Andtbacka (anyone have any experience with him?) explained the controversy over the CLND. I am currently leaning heavily toward doing it. I'm 41 years old and have a 4 year old daughter. (I could be 65 years old and have no children...I don't mean to imply I need to live more than anyone just pains me to think of her growing up without a mother...I hope this makes sense) 

My head is swimming with all I'm trying to learn about this disease and my options (or lack thereof), and what my particular case means. (Is it good that there were so few cells?...or does it mean something else?...What exactly is melan-A compared to melanoma?...Does it mean something that my "low risk" thin lesion that they thought would result in a clean biopsy came back as positive for mets?...Am I going to be alive in 10 years? How do I fall asleep at night without worrying about all of this?...Do I trust my surgeon and his team when they tell me that the risk for lymphadema is only about 20% (and occurs more in patients with other co-morbidities such as obesity?) 

On top of researching and trying to make decisions, I'm also very scared, and sad. I can't even believe this course of events. I am hoping to be in touch with an old friend who's sister also had stage III melanoma, to hear her story, which I think will help. Gosh, even hearing that she exists, and is still alive, helps. And so here I am, reaching out to all of you in hopes some of you might shed some light, give some words of encouragement, have a story of your own to tell that sounds a bit like mine. I have already read so many of the posts on this forum, and have been helped (and occasionally confused) with what I've read. Now I'm just needing a litte more personally directed feedback. 

Thanks to all of you in advance for reading and for anything you have to share. 


Login or register to post replies.

Debbieamccoy's picture
Replies 5
Last reply 10/17/2015 - 9:42pm

Got my first dose of Yeryoy and opidivo today . My hdl rose 2000 points since Keytruda and my ast is in the 600 but my bili took a big drop, my doc said my labs looked better so I guess he's not concerned about the other numbers he's encouraged by my appetite and lack of n/v. So I'm hanging in there and hoping for the best. 

Login or register to post replies.

DZnDef's picture
Replies 2
Last reply 10/15/2015 - 4:18pm
Replies by: DZnDef

Hi all,

For those curious about what the alternative medicine crowd has on offer for cancer patients, a new docuseries is starting tonight on that topic.  MPIP's spam filter will not allow me to post the link so google "The Truth About Cancer" and you'll find their website with access instructions.

I know most people on this list are not interested in alternative treatments and some are vehemently opposed to having them mentioned.  I believe we are all grown-ups and are entitled to as much information as we can gather to make up our own minds.  If you're interested, google "The Truth About Cancer" to find their new series starting tonight (each episode is available for 23 hours before being taken down).  The new series is called "The Truth About Cancer:  A Global Quest".  The final episode features cancer survivors telling their stories.

Maggie - Stage IV (lung mets unknown primary) since July 2012

Login or register to post replies.

Adam-MRF's picture
Replies 3
Last reply 10/15/2015 - 11:57pm
Replies by: AnitaLoree, kylez, Becky

Hello everyone,

As some of you may have seen on the MRF website and social media channels, this year we invited the young artists of our pediatric melanoma community to submit designs in a Holiday Card contest. After receiving many wonderful entries, 5 winning designs were selected and are currently being offered for sale. Available for $20, each box of 20 cards will contain four cards of each design and all proceeds will benefit the MRF's pediatric melanoma programs in research, education and advocacy. You can order as many box sets as you would like, but act fast as the deadline is this Thursday, October 15. You can view the winning designs and place an order at the link below:

Thanks everyone, we hope you have a great day!

Adam - MRF

Login or register to post replies.

Jacqueh27's picture
Replies 4
Last reply 10/16/2015 - 2:51pm

I posted, but it dissappeared? Anyway, going to try to post again. My daughter has had Four infusions of Yervoy and now 7 infusions of Keytruda. Since the Keytruda, there has been no change in tumor size but there is less activity and all of her levels are normal. They now want to introduce combining a Braf Inhibitor because they say the tumor (size of mango) is still too large to remove. Has anybody had success with this? What is the newest Braf Inhibitor out there? Does it cause hair loss, bad side effects? Thanks for any advice! She just hit her one year mark at State IV.

Login or register to post replies.

Jacqueh27's picture
Replies 2
Last reply 10/15/2015 - 5:28pm
Replies by: Scooby123

Hi, I haven't posted in a while. My daughter has just had her 7th infusion of Keytruda and while the tumor is still contained in liver with no spreading, there has not been any change in tumor size. It is still between 9 and 10cm. They are now discussing the combo of Braf Inhibitors. Has anybody had any success with this? They are still saying that surgery is NOT an option. Thanks!

Login or register to post replies.