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
Replies by: bball, JakeinNY, jag, Carole K

I am 2A, 3.5mm with a high mitosis,and am looking at alternatives does anyone have experiance with IAT in the bahamas, are going to a raw or macrobiotic diet, also looking at Qigong, and ozone /oxygen therapy. Trying to find a path to follow and then enjoy my life. Thanks for any feedback.BBall

Login or register to post replies.

Rydell's picture
Replies 3
Last reply 3/18/2011 - 12:31pm
Replies by: jrami3, KellieSue, lhaley

I am fairly new to this website, I've been viewing posts and replying to some. This website has been so helpful! Thank you all for educating me, comforting me, and giving me hope!

I was diagnosed with Stage 4 Melanoma in January 2011 after a double craniotomy. I have one brain met left and 5 other lesions throughout my body. I received 4 CyberKnife treatments in February and I started Temodar (150mg/day for 6 weeks). I also just found out that I tested positive for the B-RAF mutation. Can anyone tell me their experiences with B-RAF inhibitors?

I met with my neurosurgeon today. The MRI, one month after CyberKnife, shows negative uptake in the areas where my two brain tumors were removed and the tumor that couldn't be removed is stable not growing! I have two more weeks of Temodar then another PET scan to see if that is working. Dr. Carvajal from MSK will tell us what the next step will be in this fight! He's a big advocate of Ipi. Can anyone tell me their experiences with that?

I can't express how helpful this place has been for me, I was scared and searching for someone to talk to that could actually relate. Thank you and I wish all the best to all of you that are battling this beast!

Login or register to post replies.

Simmy from Oz -Melbourne's picture
Replies 6
Last reply 3/17/2011 - 11:20pm

Hi my fellow MPIPers!

I have been on PLX4032 (BRAF) for 7 weeks, and so far fabulous news!!  Im rapt and couldnt have asked for better results :-)  My brain tumour has disappeared... YAY!  And all of my tumours (liver, lungs, skin, everywhere basically) have all shrunk by an average of 70 - 80%  Although I am feeling great emotionally and mentally, I am suffering from the side effects pretty badly.   My entire body has been covered in this rash since week 2, but it is especially bad now on my face.  It looks terrible and the itchiness is unbearable!  Does anybody have any advice? or has anyone experienced this?  I also have aches and pains in all my joints, and terrible pains in my calfs and feet (my feet are blistered and painful to even walk on?)  Im not sure what to do, should I be resting to get better, and keeping my feet up,etc, so that I dont push it all too quickly and end up worse?  Or should I be attempting to do some little exercises and perhaps rehab stuff at the swimming pool? 

Also, Ive just spent the past week in hospital for a bit of a 'spruce up'!  I had a blood transfusion, which my doc sent me in for, by while in there they did a  blood test and discovered that

1. my calcium was too high (only by a little bit).  they gave me something thru IV, then lots of water thru there.  What does all this mean? Someone told me that CAlcium % CAncer go together.. Can someone please explain.... 

2. my potassium was low, so they gave me some of that thru IV too.  Anything I should know here?

ALSO...... PLEASE I hope somebody can help me with this BIG BIG problem of mine....... I CANT STOP WETTING MYSELF WHEN IM SLEEPING.  I WEAR 3 NAPPIES TO BED, HAVE SPECIAL WATERPROOF THINGS DOWN ON THE BED, BUT EVERY MORNING I END UP SATURATED AND HAVE TO CHANGE EVERYTHING......This problem is driving me mental.  My partner sleeps separately now, and nothing helps it, like not drinking at night, etc.  Im on methodone and gabapentin, I think these tabs just 'knock' me out so much, that when Im sleeping, Im just too relaxed to wake up?? But the doctors dont think this could be the reason.  Ive been tested and nothing is seriously wrong??? so im just lost and goin mental!!!  PLEASE CAN ANYONE HELP ME ON THIS ONE???    

God bless you all and hope that many of you have also been experiencinng good news and results, with all these new drugs emerging. 

love always, u are all always in my thoughts,

Simmy from Melbourne, Australia. 

Login or register to post replies.

jrami3's picture
Replies 7
Last reply 3/17/2011 - 7:37pm
Replies by: Janner, jrami3, MichaelFL, Rydell, Anonymous

I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

Login or register to post replies.

Melanoma Mom's picture
Replies 12
Last reply 3/17/2011 - 4:12pm

"Unremarkable PET CT examination from vertex to the skull through the lower extremities. No malignancy detected."

Oh yeah, we're doin' the cancer-free happy dance! The PET scan for our son was clear and while we are still waiting for the CT results, I am going with the assumption that it will be more great news.  Bloodwork is also perfect and hardly shows any effects from the continued Interferon therapy. Next up: routine check-up at Dana-Farber in April, as we haven't been there since December.

Login or register to post replies.

Wendi Lynn's picture
Replies 11
Last reply 3/17/2011 - 3:51pm

Hi All!

Anyone else out there sick of answering the question "how do you feel" or some version of that??  I love that these people care enough to ask, but I'm tired of answering.  On top of which, when I tell someone how I really feel they have nothing to say or couldn't even begin to know what hell this is.  Even with my husband....he will ask me throughout the day how I'm feeling and I just say fine, because I don't want to sound like a complainer. 

My other gripe is I have done everything I can to pretend that I'm fine around my family when I'd really rather stay in bed and sleep all day or even take a leave of absence from work just to not have to do anything for awhile.  (I'm on month 3 of LD Interferon).  But I fear that my husband, who is so accustomed to us being on the go all the time, would think that I'm giving up - which I would never do.  This, of course, is my fault because I have been holding up the last 4 months just "fine". 

I think that's why I love this place so much.  I can read about how others are feeling, what they are experiencing and learn about what I'm feeling or experiencing.  So, for that, thank you!  Although I may not post often, I check the board daily and feel as though I know some of you.  I cry with you and happy dance with you and bite my nails during anxious moments with you.  And I know that you can relate to what I'm saying, sadly enough, but thats why I consider this place so special. 

Thanks for listening!  Keep on fighting!


Login or register to post replies.

As the FDA comes closer to reaching a decision on the investigational drug, Ipilimumab (will be called Yervoy), the MRF will likely receive requests from newspaper or television reporters to speak with patients who have either been on the treatment or whose treatment decisions might be affected by the FDA’s decision.  If you have taken this drug or may consider this treatment if it comes to market, and you are willing to share your story, please take a moment to fill out the following survey:

Your participation in this survey will help our PR firm find patients who are willing to assist them as they begin media outreach efforts in advance of the FDA’s decision on Yervoy. 

Login or register to post replies.

himynameiskevin's picture
Replies 13
Last reply 3/17/2011 - 10:34am

Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)

Login or register to post replies.

Ali's picture
Replies 2
Last reply 3/17/2011 - 6:17am
Replies by: FormerCaregiver, KatyWI

I was stage IIIb 4 years ago.  Did 9 months of interferon.  I had one in transit met removed from my leg and they found another in my thigh during a PET scan.  Biopsy confirmed melanoma.  ILI and ILP have been ruled out as possibilites because the tumor is too high up in the thigh.  I have seen many Dr.s, and the surgeons here are recommending the OncoVex trial.  I am a little worried about getting the GM-CSF arm.  Any thoughts on that?  It seems like from what I read some people have the tumor taken out and then get the GM-CSF injections, but is it normal too to take them with a tumor that has not been excised? 

I am 32 with three kids, my treatment goal is a cure. I would do whatever it takes.

Login or register to post replies.

steelergirl's picture
Replies 3
Last reply 3/16/2011 - 10:39pm

I had a PET/Ct scan on Monday, March 7.  Nodules in my left lung popped up on the PET scan.  I have to have lymph nodes removed from under my left arm.  A biopsy will be done.  I will know more after i see the surgeon on the 25th of this month.  I will see my oncologist again after the biopsy.

Login or register to post replies.

LynnLuc's picture
Replies 7
Last reply 3/16/2011 - 10:35pm

March 15...I had my first appointment at 7 AM and the last one at 6:45 PM and left Moffitt at 730 PM...arrived back home at 10 was a very long day of fast food, apheresis, scans and such!

I didn’t get to see my doc today but I am sure he will contact me with the scan results in the next day or two...he is awesome like that! I usually always get the scan results on the same day...but considering how late everything ran I couldn’t expect it yesterday.

March 16...dragging my butt to work...I still don’t have the energy or concentration I used to have so it is difficult to get myself back in gear.

 I am anxiously waiting on my scan results...really wished I could have seen the doc yesterday...but oh well...It was my choice to have all the appointments on one day so I wouldn’t miss so much work. And Dr Weber doesn’t do clinic on Tuesdays…

 Yes!! Got an e-mail from my favorite oncologist….

 "Mrs. L; MRI negative, the CTs were stable and show no obvious evidence of disease. Congrats! See you in 12 weeks. Jeff W. "

Speechless!..What can I say?? March 26 will be one year NED.

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"

Login or register to post replies.

Replies by: Rydell

This is a good article on Ipi

An excerpt from the article:


When chemotherapy works in advanced melanoma, it works quickly: A scan obtained after 6-8 weeks of therapy will show stability or shrinkage. That sort of response can also be seen with ipilimumab – but in addition, two novel patterns of response have been observed. One involves an initial increase in total tumor volume at the beginning of therapy, followed by delayed onset of stabilization or shrinkage.

Even more strikingly, some patients develop entirely new sites of metastatic disease when ipilimumab is started, with stabilization or shrinkage of both the new lesions and the baseline lesions coming several months later, according to Dr. Carvajal.

Our experience with melanoma:

Login or register to post replies.

FormerCaregiver's picture
Replies 8
Last reply 3/16/2011 - 8:26pm

Could it be that long-term stage IV survivors have something in common? I
think that it would be interesting to see how many have had GM-CSF
(Leukine) at any time.

From what I have read, Leukine tends to change the nature of melanoma in
some patients. One study has found that "... the recurrence is changed, in
that they are solitary, and allow for surgical excision".

It would be great to get some opinions on this. So what do you think?

(PS: NED means no evidence of disease).

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

Login or register to post replies.

MaryD's picture
Replies 18
Last reply 3/16/2011 - 8:21pm

I feel very fortunate to say that my latest CT scan was still clear - 2 1/2 years after the last reucrrence.   In January, it was my 10 year anniversary since the start of my journey with melanoma.   Since that time I've had 5 recurrences including the lung met in 2007 when I joined the Stage IV club.

Treatments have included 1 year of interferon, vaccine trial, radiation on the arm, Ipi, and in 2009, a 6 month course of pulsed IL-2. 

I have been very blessed to not only live with this disease with a decent quality of life, but also to have met amazing patients and health care professionals  who have touched my life.

I volunteer at a local Children's Hospital and for the past year I have have been visiting a little 2 year old girl with neuroblastoma.   She has been hospitalized for 2 years, been through everything imaginable , and yet perseveres every day.   She is a daily reminder of how precious life is and what it means to fight for it.

Know that there is hope!

Best wishes to all ..



Login or register to post replies.

I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

Login or register to post replies.