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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Anonymous's picture
Anonymous
Replies 6
Last reply 11/21/2012 - 5:45am

Has anyone stopped taking zelboraf and switched to yervoy with good results? wondering if that would be a good idea and keep zelboraf for back up if yervoy fails.

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Scott B's picture
Replies 11
Last reply 9/20/2013 - 11:59am

Just found this site so I guess I'm what you call a newbie.  In 08 I was found to have Melanoma on wrist Clarks level 4. Had surgery to remove it, was told it was all removed. Jump frorwad to May of 2012. Routine yearly meeting with Onc. Swollen lympnodes in left elbow. Scans showed stage 4 melanoma. it  is more like where it isn't. Been on Zelboraf since Aug.  My Onc has been communicating .with a doctor at Md Andersen because latest scans showed tumors have shrunk in nearly  all spots but brain. The doctor at Md Andersen suggested using Zelboraf along with Temodar. I went to Denver Cancer Center Thurs.for second opinon. Dr. there said there are is no data to show that the combinations of the two drugs has shown to work. I'm confused why he feels that way yet Md Andersen said they use this combination often. It has many doctors confused because my brain tumors are not normal. Usually brain tumors are a large tumor or more, where as my brain tumnors looks like "specks of salt" many, many small ones all over. the brain. Question is is anybody or do you know somebody using this combo? Because of the volume of tumors on the brain radiation isn't an option. Just really wanting to know if anybody is using this combo and seeing good results. On a side note when I registered to join ths web site it said this registration was good for only 1 day, why?

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/19/2012 - 4:40am

My mother was diagnosed with metastic melanoma this past summer with 3 lesions on her liver and possible lung spots. She had her fourth and final yervoy treatment last week and at that time the doctor said the tumor in her liver had continued to grow. It has definitely grown during treatment. Instead of waiting 3 weeks after final yervoy treatment for scans we've moved scans up a week, in a few days. I'm looking for ideas, thoughts about what is next if yervoy hasn't worked. Surgery is not an option. Wondering if radiation would shrink tumor in liver. Any help is most welcome!

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SidneyGracie's picture
Replies 2
Last reply 11/17/2012 - 10:14am
Replies by: SidneyGracie, lhaley

My husband has finished whole brain radiation for 17 brain lesions and is being treated with zelboraf for approximately 30 liver lesions and 12 lung nodules.  The zelboraf started in early Sept and the radiation began about a week later for 10 days.  His head was very sensitive to the radiation and he got the normal redness, itching, and discoloration.  However, now he has developed a very bumpy surface on his forehead.  Doctors haven't seen that reaction before, but think it is because of the zelboraf making the skin more sensitive to the radiation.  Does anyone have experience with this type of rash or skin problem? We are currently using Eucerin on the surface of the forehead.  By the way, he is responding well to the Zelboraf.  Nodules in lungs almost gone.  Liver lesions have shrunk a lot and liver is back to normal size.  Brain lesions have shrunk significantly and there are no new lesions anywhere.

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/21/2012 - 10:42am
Replies by: alankravitz, Anonymous, JerryfromFauq, rbruce, POW

Study to Assess the Safety, Tolerability, and Pharmacokinetics of AMP-224 in Patients With Advanced Cancer:

http://clinicaltrials.gov/ct2/show/NCT0 ... 884&rank=1

Contact: Margaret Fleming clinicaltrials@amplimmune.com

Trial in 3 locations: Michigan, North Carolina, Tenn.-see link above for speicific locations & contact info.

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Anonymous's picture
Anonymous
Replies 0

Genentech recently updated their trial to increase enrollments & more locations including Europe.

Increasing the enrollment & adding more locations could be an indication that this drug (MPDL3280A) is getting a good objective response rate

Study of the Safety and Pharmacokinetics of MPDL3280A Administered Intravenously As a Single Agent to Patients With Locally Advanced or Metastatic Solid Tumors

http://clinicaltrials.gov/ct2/show/NCT01375842

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Becky C.'s picture
Replies 2
Last reply 11/16/2012 - 5:14pm
Replies by: Anonymous, paul

Hi, everyone. I am a stage IV melanoma patient being treated for five small brain mets. I am currently doing radiation for those. Just had a pet scan done which showed three positive lymph nodes, no other mets besides brain. My oncologist is recommending three mponths of temodar.. From reading posts on here, I have seen where some patients have had good response with it, and some not so good. I would appreciate hearing success stories from fellow patients that have been treated with Temodar. Thanks a lot.

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susanr's picture
Replies 2
Last reply 11/16/2012 - 1:04am
Replies by: JerryfromFauq, Anonymous

Thanks for all who responded to my previous post.  You all are great !!!!!!  I am going to talk with my brother this weekend about the PD1 trials.  It will not be easy.  I have not finished his profile yet....Don't have time to eat lately...He is stage IV as of feb. 2012.  dx. 2/2009 stage III 3a. prim. acral left heel.

Mult. surgeries.  SNL, groin dissect.  left pelvic wall mass removed.  Mets to lung, nodes, left. femur, and monster abd. tumor. This is the one thats the big issue.  Failed yervoy...12/2011.  HAd temdor, abraxane, carbo and nexavar....some imporvement with lung mets but not the abdominal monster. 

 

All opinions and advice again appreciated.  Think Pd-1 is the way to go.  Just need some more advice/comments before I go to the judge....my brother.

 

Thank you all !!!!!!!!

Susan

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awillett1991's picture
Replies 4
Last reply 11/17/2012 - 7:20pm
Replies by: Tina D, awillett1991, POW

Long story short - 7 weeks went ago off Zelboraf while still responding, and had only tiny tumor in my heart, and brain and rest of body was all clear. Since then diagnosed w 2 brain mets, 4mm new and 6mm that had been supposedly destroyed by Zel, but same tumor regret. Had SRS last week for those.

Finished 3rd Round Ipi Monday, then put back on Zel, Wednesday due to regrowth of cardiac met.

Any advice on what to expect side effect wise w these 2 at the same time? Had loads of Zel side effects the first time around incl grade 4 rash.

Thanks.

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/15/2012 - 2:30pm
Replies by: MikeWI, Anonymous

My family member was just diagnosed with Melanoma of unknown origin (axial tumor). He will be having PET and MRI this friday and surgery next Tuesday for complete lymphnode dissection. They stage him at III prior to PET. They are suggesting Ipilimumab and Interferon.

Is anyone familiar with the Marshfiled group of oncology physicians and surgeons? If so, is he in good hands? Should they seek trials before going down the Ipil or IF road?

Thank you for any input, this board is invaluable.

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Anonymous's picture
Anonymous
Replies 11
Last reply 11/21/2012 - 10:36am
Replies by: Anonymous, Hawaii Bob, jmmm, Randy437

Hi, my family member had melanoma on his face 15 years ago probably stage 1. He had it removed and has been ok up until now. It has returned. He will have a Petscan and MRI on Friday and probably surgery shortly after. It is stage 3 now. Who are the best doctors in the St. Louis area or should we be traveling to Chicago? Thanks!

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squirrell68's picture
Replies 10
Last reply 11/15/2012 - 2:45pm
Replies by: squirrell68, EmilyandMike, jag, Phyllis in IA, Phil S, Anonymous

My brother has just completed his third round of bio chemo at the Sheba Centre, Israel. His scan after the second round showed 60% tumour reduction. This is my first posting and I would love to hear from anyone who has had a good response to this treatment. A quick summary of my brother's melanoma, he was diagnosed in June 2012 at stage 4 with an unknown primary, although it may be mucosal as a tumour was in his anus. He has extensive liver mets and a brain met, which has been treated with SRS, no other systematic treatment. He is BRAF and CKIT negative.

He is feeling 100% better and many of his liver mets symptoms have disappeared. I am trying to stay positive but between treatments I start worrying about the 'what ifs'. It would be so nice to hear from other people who have been through this treatment. We are from the UK but don't seem to be able to find anyone in the UK who has had biochemo or even IL2.
Tracey

Determine to keeping fighting.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/15/2012 - 1:31pm
Replies by: W., Anonymous, Fen, Janner, POW

"Globally near 40% of CMM patients develop clinical metastases 5 years or so after initial treatment". """dddddd  I

 

I didn't think it was as high as 40%, that seems quite high. . I thought more than 60% were caught in "early" "curable" stages

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tgro97's picture
Replies 5
Last reply 11/19/2012 - 11:06am

Hello all,

 

I am new to this board and hoping to contribute in the future.  At this point I am hoping for some feedback as we are still learning about this disease.

My brother is 37 and a previous occular melanoma patient.  4 years clear after his treatment..  That was 2 years ago.  Last week he was diagnosed with stage 4 liver melanoma.  We are in NYC and he was diagnosed at a city hospital by a very compitant oncologist.  The Oncologist is recommending a high dose (10mg) 6 dose treatment regimem of Yervoy -- IPI.   We are talking to Sloan and unfortunately it is taking a while to get an appointment.  We have heard throught the grapevine that they also recommend this level of dosing.  Without a second opinion, we turned to another Oncologist at a top NY teaching hospital.  This person comes highly recommended and they recommend a totally different course of therapy.  Yervoy at 3mg for 4 doses, take a scan, see the results and then wait an additional 8 to 12 weeks without additional therapy and run a scan again.

 

Stage 4 is very scary.  I don't need to tell that to anyone on this board.  I need help understanding the best course of therapy from the patient perspective.  Has anyone tried this high of a dose?  if so, was it tolerated?  Was 3mg effective at slowing the growth.  If it wasn't, what was the next step.  Any insights would be greatly appreciated.

Tony

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