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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emilypen's picture
Replies 2
Last reply 11/28/2011 - 2:34pm
Replies by: Lisa13, Becky

Hi All,

Just wanted to give you a quick update on my husband. We had scans last week, week 20 for Ipi response and week 8 for carbo/taxol response.

We finallly got some good news. No new mets and shrinkage in a good percentage of them. So whether its the chemo or the IPI something is keeping the disease in check. Woohoo!

The chemo drugs are really tough on his system and he had to have 4 bags of blood and a bag of platelets to get his counts up. They were seriously low...

Plus his radiation oncologist has started him on some radiation for his sacrum and spine, just to help resuce the tumour size there.

No new brain mets either!


So we just keep on keepin on.... he's super fatigued and not really hungry but as our babies due date keeps getting closer we were estatic to hear that there was no new cancer.

Hope everyone is doing well. Cannot believe it's almost Christmas.



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laurieformike's picture
Replies 2
Last reply 11/28/2011 - 2:20pm

My husband, Mike's been on the Zelboraf since Oct. 3, had to stop taking do to severe rash and throat swelling. Waited 10 days because he could not get in to see Oncology doctor. But then restarted at lower dose of 3 pills twice a day. He still has side effects joint pain and tiredness and fatigue. Spoke with the Zelboraf Access Solutions Patient Support Nurse, she said he could go down to 2 pills twice a day. Just wondering if anyone out there has had to change dose? E-mailed the doctor to see if that was okay with him.

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Hello everyone! We are very pleased to be introducing our new Phone Buddy Program to the patient community, and I wanted to make sure that everyone on MPIP knew about it. This program is designed to match newly diagnosed individuals with trained volunteer who are, themselves, melanoma survivors. These volunteers will provide support and guidance to their "buddy" as they begin to navigate the melanoma landscape. Depending on the needs of the patient, these volunteer relationships can last anywhere from one phone call, to  weekly calls for a year.

I would be happy to discuss this program with anyone who might be interested in participating. We have trained volunteers ready to be matched up with buddies. You can read more here:

Please let me know if you are newly diagnosed and think a Phone Buddy would be helpful to you, and please share this information with your networks.

Take good care,

Mary Mendoza

National Director of Volunteer Services

(202) 347-9675      l

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bradcope1's picture
Replies 5
Last reply 11/28/2011 - 12:44pm
Replies by: bradcope1, LynnLuc, Becky

My daughter just got word today that she missed out on the ipi arm of the trial. The good news was that the all the scans and tests were clear, the bad news was that they want her to start interferon Monday morning. That's not going to happen. Only 10 days left to find a trial. The process stinks.

Watching and waiting.

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windy's picture
Replies 4
Last reply 11/28/2011 - 10:27am

Happy belated Thanksgiving to everyone. I am requesting information from anyone that has had painful feet and swollen hands while on Zelboraf. I have been taking it for about 5 weeks now. The rash has taken over my face, head, arms and chest. I've broke out in several places with warts. I must admit that these are bothersome - but they are better than the side affects from biochemical treatments. Any tips would be welcome. God bless you all. Thanks.

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Kosta's picture
Replies 10
Last reply 11/28/2011 - 8:15am

There is so much I want to say but first a big THANK YOU! Thank you for being the Husband, Father, Grandfather and Friend.

You personified life’s true meaning. “LOVE”. You loved everybody including those that did you harm. Your kindness and your smile touched everybody around you, even those that didn’t understand a word of Greek understood the language your eyes ...and smile spoke. My sorrow is great but I will keep your memory intact with goodness and kindness.

Even in your darkest moments you guided us with your peace. You fought very hard and didn’t give up for us. My Dad, my Hero, my Guiding Light. The person I will always be proud to call “MY DAD” I LOVE YOU and will greatly miss you. 

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Lisa13's picture
Replies 6
Last reply 11/28/2011 - 7:07am

As some of you may remember, my 12 week scan after ipi showed 50% regression and some had disappeared. 2 of them had grown a small amount, but we don't know if this is inflammation. On Wednesday, I have my 16 week scan and results and now I'm really nervous. I truly hope that the lung mets keep shrinking and the 2 that grew a tad are now starting to shrink.

That being said, does anybody know if a scan looks successful after 12 weeks, can it all of a sudden change to something bad?  I just can't imagine going from good to bad, but I know these things could happen.  Now I know there is some concern over the 2 that grew, but I could have them removed.  If 2 of them grew and the rest continued to shrink, can you reintroduce ipi because of a "mixed result" scenerio? 



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

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KellieSue's picture
Replies 8
Last reply 11/28/2011 - 5:42am

Well, after a few weeks with what I thought was strep turned out to be a pretty big tumor. I passed out at work and was taken to the ER. They found that I had one tumor in my brain. I pretty much lost feeling in my right arm and leg. I'm out of the hospital now and am doing localized radiation as a outpatient. I'd like to know why my doctor chose to treat it with radiation instead of gamma knife or SRS. I haven't received a full explanation of my treatment yet. I'm not against it, I'm just confused right now.

Kellie (from Iowa) stage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Julie678's picture
Replies 13
Last reply 11/27/2011 - 10:23pm

Hi, I have noticed a few references to bio-chemo for Stage IIIC in particular.  Could be just one person here but the oncs we have talked with say that treatment was used more in the early 2000's and is now not really recommended.  One big reason is toxicity. 

I would be interested to hear what others think about bio-chemo.



husband stage IIIC

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colleenblue's picture
Replies 4
Last reply 11/27/2011 - 9:10pm
Replies by: colleenblue, Anonymous, Janner


I'm not sure I have any right to post on these boards. I haven't been diagnosed with anything, but I know my mind is going crazy with worry.  On Oct. 27 I took off my watch and noticed a raised pink mole/bump . I have never ever noticed it before. It was 3mm in diameter. It was round shape and flat. It didn't get bothered when I wore my watch, although my wrist has been red when I wear it.   There was no pain, itching, bleeding, etc. Well I ended up picking it off my arm. And now I just have a scar where it was that is shiny. I'm so afraid that it could have been nodular melanoma. It looked like that as well as some other benign lesions:( Any thoughts are appreciated.

God bless.


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jmmm's picture
Replies 8
Last reply 11/27/2011 - 7:38pm
Replies by: Anonymous, jag, momof2kids, kylez, KatyWI, davidfromsingapore

My husband is scheduled for a craniotomy next Wednesday to remove a large (5cm x 5cm) tumor. We are both scared and worried about complications. It's in the motor area and the doctor said there was a chance of left side paralysis, plus a bunch of other complications. Any advice on what to expect, how to handle the anxiety and fears, recovery, etc. We have 3 young boys at home and I'm worried about juggling it all. He's been through a small bowel resection and a thoracotomy and breezed through both surgeries with no complications. This surgery sounds so scary. Any advice?

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nickmac56's picture
Replies 24
Last reply 11/27/2011 - 8:00am

Thanks to all of you who provided information, support, and good cheer over our last 16 month journey. It was a rough road, and as she continued on her downward spiral I was helped so often to understand choices and consequences through the people on this site. I will be forever grateful. I wish all of you the very best.


Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Napa K's picture
Replies 1
Last reply 11/26/2011 - 5:04pm
Replies by: DonW

Looking for input from those who have gone before me.  After nearly 9 years at stage IV I now havea 12 mm brain met.  Have met w two neuro/radio oncs (one works with my longtime onc/team and the other not).  I know there is not much documented "evidence" for one being better than the other but after hearing all the info, my gut tells me gamma may be a better option.  Reallly welcome your input and thoughts.

Hope is the most powerful drug

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LynnLuc's picture
Replies 4
Last reply 11/26/2011 - 4:23pm
Replies by: Phil S, LynnLuc, Anonymous, MariaH

Another warrior has passed away-Mr. Michael Alan Brockey, 33, of Adamstown, passed away at home on Nov. 18, 2011 after a very courageous battle against cancer. He was the husband of Amy Brockey, whom he married on April 15, 2005.

another melanoma stage 4 warrior passed away at the age of 33...


When I first started reading his blog back in 2009 he was doing Gerson Therapy... his latest was  B-raf

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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So those who also have breast cancer, this is good news.
Medicare Won't Change Avastin Coverage For Now
Elsevier Global Medical News. 2011 Nov 21, C Kelly


The Centers for Medicare and Medicaid Services will keep the status quo for now regarding Medicare Part B coverage for Roche/Genentech's Avastin (bevacizumab) in metastatic breast cancer despite the Food and Drug Administration's decision to formally withdraw approval for the indication, according to a CMS spokesman. "Medicare will continue to cover Avastin. CMS will monitor the issue and evaluate coverage options as a result of action by the FDA but has no immediate plans to change coverage policies,"...

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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