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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Nebr78's picture
Replies 7
Last reply 3/23/2011 - 4:44am

I have just finished strong radiation on the side of my face and on chest.  Both lumps were about the size of a golf ball.   They are now aboujt the size of a big marble. Lots of side effects, sore throat, very weak, congestion in chest but getting over all of it.


I also know I have a lump inside my lung and possibly one on spleen.

Can anyone tell me what it may feel like when the lump in the lung gets so large that it disturbs things??  Please.

I  am the one that has had heart disease for over 40 yrs so know I won't last too long.

I have been to several doctors and all they will tell me is it might do this, or do that, or do nothing. I am so  disturbed about the answers I get from Cancer Doctors.   Which is bacisically nothing.  I  am a 79 yr. old male.  I give no hope whatsoever about any kind of a cure.  Big business.

It gets harder to deal with each day. People at cancer centers just try to make you feel good about dying.  I can't accept.that.

Anyone who thinks they may know some kind of answer about my question, I will appreciate a reply.   Thanks

Retired in Nebraska

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Cancer Sucks

What else do you tell yourself when naked fear once again seeps inside your bones and curls around your heart to hang on for dear life, Cancer Sucks. Driving home Bob and I become lost in our own thoughts, each trying to catch our breath with the news given at his doctor’s appointment. I notice tears falling slowly against my husband’s cheek as he tries to compose himself, my heart is breaking. We are both in shock once more and losing control in our life has become familiar ground. Talk of summer vacation this week has slowly disappeared in the background as we come to grips as our reality swiftly changes not knowing what our future may bring us.

In only 30 days 2 new lesions have appeared by Bob’s left eye. The melanoma cells have traveled from the tumor bed site that he recently had surgery on in January and gamma knife in February. The cells left there and have traveled in the lining of his brain (meninges) and have settled around his left eye becoming large enough for the MRI to detect. The doctor has recommended Whole Brain Radiation, 5 minutes per day/15 days. It’s the only way to treat the whole lining of the brain and for any melanoma cells that could be located anywhere else in his brain.

Radiation kills the bad cells and good cells, we know this... some memory loss, loss of his white hair and it will make him tired. He will start by Thursday end of day. Bob is getting headaches more often now and has difficulty sometimes with speaking, he is still working.

Also, I ask of those who are on this discussion board and know of WBR and have gone through it themselves to please add to this thread. My husband could use the support as this has shaken him badly. I do appreciate it and whatever words of encouragement you can give we certainly will appreciate it.

Thank you.

Please keep Bob close to your hearts in the following weeks.

Peace to all.

lovingwife to Bob, stage 4

If you would like to contact Bob

If you would like to contact our family blog site:

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ComfortZone's picture
Replies 3
Last reply 3/10/2011 - 12:28pm

Hello! This is my first post amongst all you people of such beautiful energy! Surely, the first of many, considering how grateful I am for all of your inspiring, educational, and deeply connecting words I have been reading over the past six months. What took me so long to finally post, right?

Dad is the patient, and his stats are below. I have a bucket load of questions, but I’ll start with this: Can Dad be treated with Ipi while he's receiving brain radiation treatment, without any waiting period in between or requirement to stop one before starting the other?

We realize that often there is a requested waiting period between radiation treatment ending and Ipi starting according to clinical trial protocols, but since he would be receiving it based on compassionate use, are the clinics required to treat him in accordance with those protocols? It clearly makes sense for clinical trial purposes to have the grace period, but it seems to me that for compassionate use, the waiting has significantly different relevance.

Anyone out there been treated with Ipi infusions while undergoing SRS or WBR, or at least not been required to wait the 14 to 28 day waiting period? Is this the doctor’s decision, or are the clinics under restriction from a compassionate use rule system?

Dad: 81 years old, relatively healthy prior to melanoma, aside from low-grade non-hodgkins lymphoma; stage 4, mets to liver first, then brain; Kaiser patient, temador for one month, little-to-no effect on liver lesions, blood platelets fell to risky level, (platelets eventually increased to safe level); blood clots in lung, as byproduct of melanoma; no prior history of cardiovascular or pulmonary challenges; pursuing compassionate use Ipi, failed B-Raf mutation test; most likely beginning brain radiation treatment this week; hopefully SRS, but possibly WBR.

Thank you! And I'm really looking forward to contributing to this amazingly supportive community!


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Bugandi's picture
Replies 7
Last reply 3/9/2011 - 9:56pm
Replies by: Lisa - Aust, Anonymous, KellieSue, dawn dion, Bugandi


I have been on the GSK BRAF/Mek trial for 8 weeks now, and go for my first ct scan tomorrow.   Hoping and Praying for good results.  So far, the trial as been ok, but some of the side effects have gotten me.  Extreme joint pain in my feet and hands.  Taking oxycodone for it, which leaves me fatigued.  Otherwise, very few other side effects.  Anyway, wish me luck.


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I was diagnosed in November of 2010 with a 6mm Melanoma on the inside left thigh.  Since then I have had the wide excision and sentinel node  biopsy in December 2010.  One of three nodes had microscopic cancer cells which prompted the superficial groin excision in February.  Thankfully all nodes were clear.  


So I still have three drains in and will likely not be ready for the next step until late April or May.  I am presuming it will be Interferon but since I am a 3A with the larger tumor , I am not sure.


Just looking for advice to boost immune system or what preparation I can do now while I am waiting for the next step to begin.

"Hope is the only antidote for fear" Lance Armstrong

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Newmom's picture
Replies 13
Last reply 4/25/2011 - 1:16pm
Replies by: Janner, Newmom, lhaley, Ranisa, Anonymous

I was diagnosed in 7-2005 with Melanoma on the back (0.25MM - Stage 1A, Clark level 2) three months after I gave birth to my daughter.  My 2nd daughter was born in June the following year.  Last night I noticed that a mole on my 2nd daughter’s butt (she had it since she was a baby) has changed in color and immediately took her to my dermatologist this morning to have it biopsied.  The doctor said that 2 new moles have grown on top of the existing mole so the color is different but thinks it is a good idea to have it biopsied.  In event, I am freaking out and lot of unpleasant memories came back … I googled and it appears that pediatric melanoma is rare and extremely unpredictable … sorry but I just need to vent a little … any thoughts?  The doctor said the result will come back in a week … I don’t know how I am going to survive this week …         

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glewis923's picture
Replies 14
Last reply 3/10/2011 - 7:05pm

Hello from Hoboken, GA:  After 1 wk. SRS then 2 wks. WBrainRad,  I'm now offically on Ipilimumab (IPI).  Started last Thursday, less than week after WBR. and feeling quite well under circumstances.  Questions on IPI:

1- How long did it take for you to "present" any side effects..? 

2- Took bath last night and started itching around waistline, upper thighs;   stopped after I cooled off;  IPI ??

3- Is it really true that showing some side effects "means its working"?


Thanks for any input.  Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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This is very minor issue, but was curious.  I have been off of interferon for year and a half.  My cholesterol was normal before interferon, but since doing interferon it has been high.  I hoped a year after being done with interferon I would see cholesterol go down, but instead it has gone waaaay up.  I have spent past year eating low fat, no carb, healthy diet, exercise daily blah blah blah haha do all that I am supposed to but it has gone from over 200 to now over 300.  I wondered has anyone else found that the interferon did this? I would like to blame it on that, doctor pushing me to go on medication but I am trying not to, but seems I have going to have to. 

thanks laurie from maine

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kbc123's picture
Replies 12
Last reply 3/11/2011 - 11:23pm

I am up in the air here wondering if I am not treating myself as I should.

My surgeon says watch and wait because it is so microscopic in my one node..  All the studying I do on here tells me I should be looking further into this.  My surgeon also said to me that technically, yes I am 3A but he doesnt put me in that category because of what they found in lymph node. To me?  It was still found there so I am 3A?

I was making my second opinion phone call today but I do hear that Sloan Kettering in NY will not even offer a treatment either?  Maybe I should make the appointment in NYU or Penn or whereever...this is so confusing.

Help !  And have a blessed day !


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Shelly in Switzerland's picture
Replies 11
Last reply 3/10/2011 - 6:14am

On Friday I was told that I do in fact have brain mets as well as edema.  It looks like the only option in Switzerland is WBR.  Their protocol is that if there are more than 3 tumours they do WBR.  After that they would do targeted therapy.  Thoughts???

Screaming, crying, and reeling with this news!  Trying to stay on the positive side of things though.  Ipi looks like an option for brain mets.  Am I correct on this? 


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akls's picture
Replies 7
Last reply 3/8/2011 - 6:15am
Replies by: akls, Anonymous, LynnLuc, Vermont_Donna, Jerry from Cape Cod, Fen

Hi all.

I haven't posted much about me lately because it's been pretty boring :)  I went for my yearly ob/gyn exam and all was good except my thyroid levels both free T4 (low) and TSH (high) which puts my hypothyroid.  Not really uncommon after inteferon from what I hear.  After finding out my levels were off, of course I start feeling where my thyroid is.  One side is noticably larger, my Dr. said he could see it and feel it, but just one side.  So...instead of just putting my on synthroid, he is scanning my thyroid on Thurs. just to make sure there are no nodules or whatever he is looking for.  Now my mind is freaking that it's back.  Any comments would be appreciated.  I am probably just being me and worrying over nothing.  BTW I had a clear PET in July 2010.

I read the board daily and comment when I think I have worthwhile advice.  I am in awe of all the warriors on this site. 


Amy S. in Michigan

Stage IIIA 6  years NED Completed 1 year interferon 2009.  God is Good.

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But, has anybody heard from Amy Busby, or JillnEric in a while?

Insert Generic Inspirational Motto Here

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heg50heg's picture
Replies 7
Last reply 3/7/2011 - 12:04am

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

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heg50heg's picture
Replies 7
Last reply 3/11/2011 - 10:59pm

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

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RMcLegal's picture
Replies 45
Last reply 10/25/2011 - 8:37pm

I recently read a discussion board post by a woman, newly diagnosed with melanoma, who wrote that several of her friends had responded "at least you don't have breast cancer".  This inspired me to write a new blog post, mostly tongue-in-cheek, about melanoma awareness unfairness.  Does anyone else sometimes suffer from pink fatigue?  Best wishes to all.

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