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
Reneezd's picture
Replies 6
Last reply 2/12/2013 - 9:52am
Replies by: Anonymous, POW, Harry in Fair Oaks, awillett1991

My boyfriend started a clinical trial with PX866 and Zelbraf right before Christmas. He had had a scan that showed possible spots on his luings, too small to biopsy, as well as a fast growing tumor on his cheekbone. Previously he had a large melanoma on his forehead/hairline removed and his lymphnodes as well on both sides of his neck. There was melanoma in all of that.
Once he started the clinical trial and the tumor on his cheek went away, he asked about going off the trial so his body would not get immune to themeds as quickly as the doctors say (7-9 months). Once of the nurses told him he would be on medication for the rest of his life. The doctors seem to talk around the subject.
My question is, would it be better to do something harsh like the IL2 and have a chance of remission? The clinical trial is wearing him down, his weight and energy levels are super low. I just don't understand the benefit of it if it doesn't have a chance of remission.<
Thank you!

Login or register to post replies.

casagrayson's picture
Replies 9
Last reply 2/14/2013 - 12:30pm

 

My husband is the melanoma patient.  He's had two primaries on his head (one on his scalp, the other on his jawline).  Both were Stage 1.  In the past six months, he has had many precancerous lesions frozen, plus three basal cell cancers (all requiring Mohs surgery and two considered abnormal basal cell) and one squamous cell.  Last week he had three more biopsies.  We've switched dermatologists because we didn't think his previous one was very thorough in body checks, plus he wouldn't answer questions to our satisfaction.   Here's the latest issue.  Last week I pointed out a red irritated spot on my husband's neck.  I told the derm that this spot never goes away and flares up from time to time.  Not long ago it almost got the appearance of a boil, but then went away (leaving just the red mark for the derm to see).  The derm just acted like it was a little irritation and not to worry.  Well, today the "boil" is back.  Does melanoma ever present this way?  I guess I'm specifically worried about a melanoma in transit or some sort of metasticizing, especially since it is on his neck near his lymph glands.  My husband is so tired of being poked, prodded, and being worried about biopsies that I don't think I'm going to be able to convince him to go back to the doctor while the "boil" is present to have him look at it.  (He will say "the doc didn't seem concerned".  But as one who has been through years of struggling to get diagnosed with a rare disease ... Cushing's ... I know that we have to be our own advocates with these doctors.)  

Am I just working myself into a frenzy for no reason?

Strength and Courage,

Susan

Login or register to post replies.

Janet Lee's picture
Replies 8
Last reply 3/14/2013 - 5:01pm

Briefly, my husband was diagnosed Stage IV on January 18, 2013. He has had 11 rounds of radiation to his pelvic area for two large masses and a tumor at L1 causing significant pain (1 to go!). He also had cyberknife this past Friday morning for a tumor in his parietal lobe. The plan was to start Zelboraf this coming Wednesday, Feb 13, at Dana Farber. I believe the Zelboraf appears to be a sound, valid first choice of treatment, since Don did test positive for the BRAF mutation.

Insurance company says he was 600R instead of 600E and is therefore ineligible. Has anyone else had this experience? We have appealed the decision, and the DFCI doctor has sent supporting documentation that the 600R is clinically identical to the 600E.

Don't these insurance companies know they are dealing with peoples' lives here?

Help?

Janet

Login or register to post replies.

Hstevens0072's picture
Replies 15
Last reply 2/13/2013 - 9:57pm

My most recent PET showed multiple bilateral lung nodules. I've had the biopsy and we are waiting for the results - I'm hoping it was dust bunnies on the scanner. Dr Ibrahim is having it tested for BRAF gene. If it is positive she is suggesting I participate in a Single Arm Open-label Phase II study of Vemurafenib followed by Ipilimumab. My question is this, should I try the IL-2 before attempting the study? After reading multiple reports it sounds like if you do Ipilimumab you can't then do INterluken but the reverse is not true. Any advice would be most welcome.

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

Login or register to post replies.

bikerwife's picture
Replies 5
Last reply 2/10/2013 - 6:08pm

we had gamma knife on brain mets have to go back on the 18 and finish he had 22 very small ones.

none of the tumors that were visible be fore z has returned. Can z be working in body and not brain?

What God leads u to he will. Lead you through

Login or register to post replies.

lisab60's picture
Replies 7
Last reply 2/9/2013 - 5:35pm
Replies by: Janner, lisab60, washoegal, sjl

I was just diagnosed Friday feb 1st. I was referred to MDA on Tuesday, feb. 5th. They called me Thursday about ins stuff and said I should hear back by Friday or Monday. Just wondering if they would have app for me at this time. I am ready to get started on some kind of treatment. My gen. Onc said I am a stage 3. SCARY! I feel like this stuff is just going everywhere as I sit here waiting for them to call.

"Bring the Wood"

Login or register to post replies.

I was just diagnosed Friday feb 1st. I was referred to MDA on Tuesday, feb. 5th. They called me Thursday about ins stuff and said I should hear back by Friday or Monday. Just wondering if they would have app for me at this time. I am ready to get started on some kind of treatment. My gen. Onc said I am a stage 3. SCARY! I feel like this stuff is just going everywhere as I sit here waiting for them to call.

"Bring the Wood"

Login or register to post replies.

kellygrl's picture
Replies 17
Last reply 7/6/2013 - 9:32pm

My husband had MRI & CT scan this week, 8 mos on Zelboraf and brain tumors are still shrinking and CT remains clean! :) POSITIVE MIND ATTITUDE & PRAYERS

Login or register to post replies.

My husband had MRI & CT scan this week, 8 mos on Zelboraf and brain tumors are still shrinking and CT remains clean! :) POSITIVE MIND ATTITUDE & PRAYERS

Login or register to post replies.

My husband had MRI & CT scan this week, 8 mos on Zelboraf and brain tumors are still shrinking and CT remains clean! :) POSITIVE MIND ATTITUDE & PRAYERS

Login or register to post replies.

sal d's picture
Replies 5
Last reply 2/12/2013 - 7:56pm
Replies by: sal d, Janner, POW

Skin appt this week. I have had 4 in situs in past 11 years. 58 punch biopsies. Photos twice. I have three things I want biopsied, but I know it will be a hassle. Residents dont listen. i am a nurse so............one spot is like two tiny black spots together on my thigh. I know it is new....within a year. So I want it off. I have not been for exam in two years because I know they think Insitus are just nothing. Frustrated. Had to switch docs due to my insurance. Any suggestions on how to get these stupid three spots taken off?

Login or register to post replies.

mark d's picture
Replies 6
Last reply 2/8/2013 - 9:28pm
Replies by: mark d, Janner, washoegal

I found out 1 Feb I have NM. I posted it a few days a go and got great advice.I had it for at least 4-5 month when they did a shave biopsy. They only got 2.7 mm off when they did the biopsy. Yesterday I saw the oncologist at BAMC. They just asked questions did a quick check on my body and scheduled a surgery appt for march 4.. Considering the fast rate of NM and no other tests were done and the only info is from a shave biopsy, isnt this quite a bit of time to wait? How fast have others had things taken care of? I am in the military and can go else where for treatment .
V ç

Login or register to post replies.

bioguy's picture
Replies 1
Last reply 2/8/2013 - 5:29pm
Replies by: Janner

Finally got the call with  my biopsy results today.  As some of you suggested, it was indeed basal cell carcinoma.  This has been an amazingly frightening and revealing week for me.  It has certainly increased my awareness of melanoma and related skin cancers.  I'm a scientist by training and work with the federal government, though my specialty is infectious diseases.  Sadly, my knowledge of melanoma was very limited.  I, too, thought it was a disease of the very old or only those with extensive sun exposure.  When I talked to a friend earlier in the week about my biopsy anxiety, even she commented that, "well, even if it is melanoma, they are so good these days, they just cut it out and that's it."  I'm thankful this time that it was only BCC, but it has definitely increased my awareness and I intend to spread the word.  Due to the large number of atypical moles that I have, I made an appointment to see a dermatologist for a full body scan next week, and I will spread the word to my family and friends.  Further, since I also have some adjunct faculty appointments, I will use my classroom as a chance to educate my students on melanoma and melanoma research. 

Thank you all so much for your warm acceptance and words of wisdom and encouragement, and I'm so glad I found this forum.  I plan to learn all I can about current melanoma research and how I can help.

Login or register to post replies.

JoshF's picture
Replies 8
Last reply 2/15/2013 - 7:06am

Hello Fellow Warriors!

I had a quick question on staging but first let me give you a little background for those not familiar.

Aprill 2011- Small bump in cheek removed by derm. Thought to be sebecaous cyst as skin looked fine. Comes back melanoma and suggested metatstatic melanoma. Find melanoma specialist....PET/CT....negative

May 2011- Wide excision and SLNB. Margins clear and SLNB negative. Oncologist is convinced of unknown primary...thinks it could be primary dermal melanoma....a rare subtype. No further treatment advised.

Nov 2011- Feeling uncomfortable...find another melanoma specialist. Wants more aggressive scans....3 months vs 6 months. Finds my case unique but figures I fit more into stage III or IV.

Very confused as you want to believe it was primary but what to fo. Lots of advice....very differing opinions oddly enough from friends who are doctors (university medical vs. private). Whatever I just want to whip this so I continue seeing both but opt for aggressive follow up doing scans every 3 months.

This leads me to my staging question....I have order for scan and see that for diagnosis it says Stage X, pt3a. I have no clue what this means and where I fit in to "staging guidelines". I really hate being an oddball but I have been blessed considering what others are going through or have been through. I visit often as I appreciate the wisdom and logic that is shared on this site. I know scanziety is building (scan is Feb 22nd) and I always keep waiting for shoe to drop. Try to stay positive but nerves do get best of me.

Wisihing you all the best and hoping to hear great things about new treatments on the horizon. My doctors say there are some great advances happening and new treatments aren't far off!!!

 

Josh 

Login or register to post replies.

I have been in a GSK BRAF/MEK combo trial for Stage IV patients since May 2011.  So far so good!  John Patrick Michael Murphy, who also posts on this board, has been on this combo for over 2 years and recently posted that he is well.

GSK recently announced a study of this combo for Stage III patients:

http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phas...

This will be a Phase III double blind study, with patients randomized to receive either the BRAF/MEK drug combo or placebos.  It is something for completely resected Stage III patients to think about, as existing adjuvant therapy options are limited.

Best wishes,

Harry

Login or register to post replies.

Pages