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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PhoenixJ's picture
Replies 1
Last reply 1/8/2012 - 1:29am
Replies by: FormerCaregiver

Hey fellow warriors,

I was taken off zelboraf a couple of months ago at my doc's suggestion so I could start ipi and hope for a more durable result. I am starting to get really nervous because the subq tumor that was basically gone after two months of zelboraf is now back and seems to be even larger than before starting zelboraf. I am supposed to go for my third ipi infusion this Thursday. Clearly it hasnt started to work yet and i am beginning to get worried that the ipi wont work at all. And given the size of this subq I am wondering just how large my other mets are getting. Has anyone else had what seems to be rapid growth after starting ipi? If so did you then respond later?

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lyndaloo's picture
Replies 2
Last reply 1/7/2012 - 11:32am
Replies by: lyndaloo, lhaley

Hello - My husband had his third round of ipi last Friday.  I have tried to fill in his profile but cannot get it to work so here is a brief history, he had lung surgery last February and brain surgery in May followed with tomotherapy (targeted brain radiation) and whole brain radiation.  His scans a couple of months ago before starting ipi were ok,  a small tumor in his abdomen and several subcutaneous tumors.  His eyesight has been deteriorating for the last two months and the past week he has been getting headaches with eye pain. Because of the holidays we saw an on-call eye specialist on Monday and they said the eye looks ok but they figure it was a weakened muscle behind the eye and was probably due to the brain  radiation.  We have to see his opthamologist next week when he gets back from holidays.  I called our oncolgist yesterday and they said it is probably a side effect from the ipi and if the headaches get severe in nature and tylenol doesnt' help then to call back.  Our oncologist said to discontinue the steriod eye drops.  My husband cannot read, write or drive,  his eyesight seems to be deteriorating fast and I am worried.  We have to wait until next week to see someone but just wondered if anyone else has had this happen.  I know some people responded to my inquiry last week regarding this.  I am confused though because the eye doctor said they couldn't see any eye pressure yet they blamed it on the eye muscle.  FYI, the ipi seems to be working, all his subcutaneous tumors on his body have shrunk to nothing which is awesome!!  If there is any one else able to respond with anything else, I would appreciate it.

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Gene_S's picture
Replies 2
Last reply 1/7/2012 - 11:02am
Replies by: vickykay

I have not tried this but it is something I came accross and just thought it might help someone with this problem.  I figure if you have a problem with lymphatic flow it wouldn't hurt to try it. 

No drug exists that has the ability to improve lymphatic flow; however, the job can easily be handled through the topical application of Castor oil," said Dr David G. Williams.

Learn more:

Judy (loving wife and caregiver of Gene Stage IV

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

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pbnjelley's picture
Replies 1
Last reply 1/6/2012 - 10:18pm
Replies by: FormerCaregiver

Hi!  This is the first time I've ever posted anything really, but really would like to see if anyone else is in a similar boat.   I'm 26 years old and was diagnosed this summer from a mole on my upper back and then during surgery they also took out 16 lymphy nodes under my arm, 3 of those having melanoma.  So I was a stage 3.  Through the various scans (some even done twice) my oncologist was able to tell me that I am at this point cancer free!  So I am signed up for the IPI trial to hopefully prevent any reoccurance.  I had my first transfusion the beginning of November and felt fine for a couple weeks with little to no side effects.  And then my body crashed a couple days before my period.   I became extremely sick (nausea, vomiting, etc) and therefore dehydrated.  I was exhausted and all my muscles ached.  I had hot flashes and night sweats and chills that nearly made life stand still as I cuddled with my heating pad, rice bag and cups of hot tea complete with down-comforter.  And then a day or two after my period, all the symptoms slowly backed off.  My oncologist (who suspected something wrong with either my adrenal gland or thyroid) made an appt with an endocrinologist who determined that my estrogen levels were alarmingly low and my body thought it was going through menopause.  Has anyone else had their hormone levels change since on IPI?  My body just did the same ordeal all over again last week (again, within the time frame of a couple days before, all through, and a couple days after my period).  So far the fix is to try being on a birth control pill to help stabalize my hormones but I am not too keen on this quick fix because I also have Factor V Liden and have to be super aware of blood clots.  I just am wondering if anyone else has experienced anything like this.  Other things that have happened since I started treatment,  i developed a pilonidal cyst (cyst on my tailbone that progressed very quickly) and pnemonia in my right lung.  I doubt these have anything to do with treatment, but will throw them out there just in case anyone else has had problems.  I'm the only person being treated with this clinical trial in the area that I live (2nd one ever to be treated) and am finding it hard to find ANYONE in the area who has any kind of melanoma knowledge whatsoever.  I find myself in the dark a lot.

Today is my day!

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Whitdonmike's picture
Replies 3
Last reply 1/6/2012 - 7:17pm
Replies by: scots, King, Lauri England

Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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CLPrice31's picture
Replies 3
Last reply 1/6/2012 - 6:02pm

I have been participating in the ipi/placebo trial at Memorial Sloan Kettering since May. Although I have no idea if I am receiving the drug or not, I have had quite a few of the symptoms.Currently, I am battling joint pain in my hands. My body has felt super sluggish since my second dose of the trial drug and I usually feel like I have a constant hangover; however, this is new. I am only 24 so it seems a bit young for arthritis.... I was wondering if anyone else has had a similiar problem? I have quite a bit of nerve damage in my shoulders/arms due to the surgeries, but only after my 5th dose (the first of the once-every-3-month-sessions) have I been having pains in my fingers. There is swelling and pain in two of my fingers on opposite hands. When I first started the trial, I had pain in my left foot. That has, thankfully, gone away. I guess I have something new to talk to The Wizard--as I kindly call my oncologist--on the 20th. I have had really bad headaches throughout this trial and thanks to my upcoming scans, I am starting to freak myself out......

Thank you in advance for any advice you can share.

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.

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Replies by: boot2aboot

Inhibition of BRAF(V600E) Relieves IL-1– mediated T Cell Suppression by
Melanoma Tumor-associated Fibroblasts
Jahan S. Khalili, Shujuan Liu, Tania G. Rodríguez-Cruz, Mayra Whittington, Seth Wardell, Chengwen
Liu, Jieqing Chen, Minying Zhang, Yufeng Li, Richard W. Joseph, Suhendan Ekmekcioglu, Elizabeth
Grimm, Laszlo G. Radvanyi, Michael A. Davies, Patrick Hwu and Gregory Lizée
The BRAF oncogene demonstrates a characteristic mutation (V600E) in a significant fraction of
cutaneous melanomas, leading to constitutive activation of the MAP kinase pathway. This genetic
lesion endows tumor cells with proliferative and survival advantages, and metastatic melanoma patients
treated with the BRAF(V600E)-specific inhibitor vemurafenib have shown dramatic clinical responses.
Here, we show that BRAF(V600E) induces transcription of the IL-1α and IL-1β genes in both
melanocytes and melanoma cell lines and that this upregulation is specifically abrogated by targeted
BRAF(V600E) inhibitors. Furthermore, treatment of melanoma tumor-associated fibroblasts (TAFs) with
IL-1α/β significantly enhanced the ability of TAFs to suppress the proliferation and function of
melanoma antigen-specific cytotoxic T cells. IL-1α/β treatment of TAFs upregulated multiple
immunosuppressive factors, including COX-2 and the PD-1 ligands PD-L1 and PD-L2. Specific
BRAF(V600E) inhibitors largely abrogated the ability of melanoma cells to confer T cell-suppressive
properties on TAFs. These results support a model in which BRAF(V600E) promotes immune
suppression in the melanoma tumor environment through an IL-1-mediated mechanism involving
resident stromal fibroblasts. Based on these findings, combination therapies involving targeted BRAF
inhibition and T cell based immunotherapies are warranted.

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

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j.m.l.'s picture
Replies 9
Last reply 1/5/2012 - 11:21pm

Need help..suffering from headaches and major blurry vision. This is after 3 rounds of IPI and now on Dacarbazone.. Going back and forth. Taking steroids help the matter but I have been on roids for 3 months. Not good. When I lower the roids, symptoms get worse. Eye dr. says I have inc. eye pressure (taking drops). Onc. doesnt know, neurol doesnt know.

what do I do if they dont know. Any thoughts. Please!!!

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Lisa13's picture
Replies 2
Last reply 1/5/2012 - 10:52pm
Replies by: Lisa13, Roxy1453

As dicussed before, I was having some issues which at first scared me, but then my oncologist perscribed me the entocort and immodium, Today I just started the Entocort because I was feeling nauseus.  I know the internet says that nausea is normal with crohns disease and just wanted to know if anyone has experienced the nausea with this problem?   It's very mild nausea and comes and goes. Because of this, I don't have much of an appetite which is completely understandable. 

I just want to know if this is what others have experienced. When I asked my Dr. why he's just giving me a perscription and not concerned about the cancer, he said that the symptoms I was having was colitis.   Since way before cancer, I've had acid reflux and hiatal hernia which have become worse since all my treatment, so it's hard to know what the heck is happening.  Having cancer, anything bothers you even though it could be completely normal.

Isn't it strange how I had no symptoms while on ipi (except for rash and itching) and now, 3 months after finshing, I've got the rash, itchy head, intestinal problems and nausea!  My immune system is definately kicking in again!

Many impossible things have been accomplished for those who refuse to quit

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Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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Lilylove414's picture
Replies 16
Last reply 1/5/2012 - 9:59pm

Ok, I'm getting anxious about treatment! My appointment is Jan. 9th to go to UVA and talk to my doctor about starting Interferon. I don't know how all stages work, all I know is at stage 3, they don't give you many options! He said wait it out, which seems more like a death sentence to me! I could do a clinical trial, but who knows if they'll work, so it didn't take me long to choose the feron. I've decided interferon is too long, so now it's the feron. Anywho, I have 12 months of it and I am aware of the blood tests and liver tests. But I do have concerns.

For instance, will I go bald? I have a fairly lumpy head, and no one needs to be subjected to that! Am I going to be the only 25 year old I know with saggy skin from the freak weight loss I've heard about? I don't need to look like I can jump off a roof and take flight. But the initial thought of weight loss doesn't bother me! I'm a chunky bring it on!

Yesterday I just had a baby melanoma (in situ) removed from my back. Smidge sore back there!

One more note! I can't seem to figure out how to delete my first post since it caused a little...conflict. I would like to apologize to Tim, because I was being very irrational. I don't like upsetting people. I simply took it the wrong way and flipped.

Well thanks for listening...or reading. Have a great New Years everyone and stay blessed!


If God is for us, who can be against us?

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Roxy1453's picture
Replies 12
Last reply 1/5/2012 - 9:51pm

I had my second infussion of Yervoy Dec 29. I started having stomach problems and diarrhea on Mon. Dec 26. It has gotten a lot worse since treatment. Onc told me to take Imodiam to help. It has helped some but every time I eat ( I'm trying to eat right) it goes right through. Has anyone else had this problem and what did you do that helped?



"I can do all things through Christ who strengthens me." Philippians 4:13

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lhaley's picture
Replies 8
Last reply 1/5/2012 - 8:45pm

This morning onto Charlotte I started to see double vision. Petrified.  Today was just to be the PET/CT.  There was an accident on the Interstate and we were running late. My husband had to just drop me off to go park and I went to walk and I could not support myself. The guard got me quickly into a wheelchair. 

I called my oncologist and told him what was going on, he immediately had another mri.  Both PET and MRI was good!    The problem is edema.   I had almost weaned and during the last 3 weeks the edema had caused more issues with out having the steroids.....ugh

I have an appointment with both the radiologist and nuerosurgeon and will make the decision.   Both my husband and my oncologist feel that they were glad of the scan results, I am glad but am already anxious for the next step.

By night the double vision was already gone, eyes are still a little bit of blury.  The tumor was originally discovered the night before my last PET and now this time it was discovered that morning.  Overall I guess I'm pretty lucky and they fit me in the same day.


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AlanM's picture
Replies 2
Last reply 1/5/2012 - 8:24pm
Replies by: CLPrice31, lhaley

I took two doses of Yervoy this fall (August - September) but had to stop due to a bad case of colitis. I was on steroids from mid September through mid-December. The past week I have felt slightly dizzy and I am wondering if this is a side effect of the yervoy. I did not feel it while on the steroids. I did have a brain met treated with gamma knife this past May, but scans in November showed that to be shrinking and no progression (whew!).  So just wondering if anyone here has felt the same either coming off the steriods or from Yervoy in general Thanks.


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Jim M.'s picture
Replies 1
Last reply 1/5/2012 - 8:12pm
Replies by: Gene_S

Hi Gene,

 I've either been away or our daughter who was visiting made her home at the computer!

  To hopefully make more clear what I wrote, "My immune response was at least 5 times over baseline", here goes. Before I began treatment with Yervoy I underwent leukapheresis where a portion of my white blood cells were harvested with the aid of a cell separator machine. My oncologist (more appropriately immunologist) then studied the white blood cells conducting immune assays. He determined my baseline level of T cells.

  Approximately 3 months into treatment I had a second leukapheresis to harvest more white blood cells and determine if there was an immune response. My immunologist reported I had a big response and said the level of T cells had proliferated in great numbers. That's when he said I had an immune response of at least 5 times over baseline. I had a 3rd leukapheresis done toward the end of my treatment and it showed the same response. Hope this helps.

God's richest blessings this new year,

 Jim M.

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