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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BethA in VA's picture
Replies 2
Last reply 11/26/2012 - 12:05pm
Replies by: dodgedh2, Tina D

I just passed the 8 year mark of NED with Stage 3/B Melanoma.   For the first time since 2004 I don't have to return to my oncologist for one year!!  This is a big victory.

At the same time I got good news, the husband of my friend was fighting for his life.   He only had a 8 months since diagnosis, and thought he was responding well.  Then about 1 week ago, he had Gamma Knife surgery, and was unresponsive from then on.  I attended his funeral today.   We rejoice that his fight was not long, but I feel so bad that he just never seemed to have a chance. 

I think I feel guilty...which I  know makes no sense.  But I am well, and he is gone.  This has brought back many emotions that I thought were gone. 

BethA   Once again NED 8 years        (NED 10 years between MM #1 and #2)

Melanoma tends to cut into your looks!!

 

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pfcresearch's picture
Replies 2
Last reply 11/20/2012 - 6:18pm
Replies by: pfcresearch, Anonymous

Good afternoon.

Please forgive the intrusion.

I am inviting people who are currently diagnosed with Stage III Melanoma to participate in a telephone interview to discuss how you feel about some of the treatments you may or may not have tried.

The interview will be conducted via telephone, at your convenience. The interview will last no more than sixty minutes; each participant will be paid an honorarium of $100 as a thank-you for your time and trouble.

I promise that this is not a sales presentation of any sort--strictly medical opinion research.

If you think you might like to participate, please call me at 212.289.0087 (of, if you prefer, please respond by email with a number where I can reach you).

I promise that this is not a sales presentation, of any sort--strictly medical opinion research. You will not be asked to try any treatments or therapies. I have been in the business of medial opinion research for more than 32 years. I can assure you that all participants will be treated with dignity and confidentiality. From our experience, participants are always pleased to join in on these studies.

Thank you, and best regards,

David Leonard
Director
pfc Medical Opinion Research
New York, NY
212.289.0087
pfcresearch@verizon.net

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AlisonC's picture
Replies 9
Last reply 11/21/2012 - 10:08pm

Hi all,

I got such a lot of support from this board some years back and feel bad that I am not here more often to "pay it forward".....each year it's my mantra to try and give more back.

Just stopping by to say though, that I just marked 11 years NED since my lymph node dissection and clinical trial.  I've been the uber-compliant patient from complementary treatment perspectives - meditate, juice, exercise etc etc (thank goodness even complementary treatment protocols include wine and chocolate !!) as well as all my mainstream medical stuff (excisions, clinical trials, scans etc) and so far so good.  Maybe an indolent mel but I'll never forget how it felt to walk down the corridor labelled "oncology" for my first meeting with my (wonderful) doc.

And thanks to the MRF and this board in it's various incarnations over the years.  It's been a lifesaver every bit as much as my medical team was.....(so far).

Taking nothing for granted but very pleased to have beaten the 10 year mark....

thinking of you all

AlisonC

Stage IIIB

NED since 2001

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tommy90's picture
Replies 12
Last reply 11/21/2012 - 10:25pm

 I noticed this new mole, maybe 6 months ago. It's been the same. It is probably like, 1mm in size. Absolutely TINY. This pic was taken with a really high def camera.
It has these 3 little black dots in it (they are barely visible with the naked eye, you really need to straaain to see them, probably 1/3 of a milimeter? 1/4 of a mm). It hasn't grown, in my opinion.
Do you think this is cause for concern? I don't have any moles like it, but I am worried.
Time for doctor, or no big deal?
picture.
http://i47.tinypic.com/34h9ymu.jpg

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mama1960's picture
Replies 7
Last reply 11/21/2012 - 5:46am

Tomorrow will 7 weeks since surgery. Still sound 200 ML per day. Yesterday, the stitch holding one of the tubes pulled out, and the tube came out enough to lose vacuum in reservoir. I will be calling doctor in the morning, but just want to hear from others that this has happened to. Right now, I'm taped and strapped up.

It is what it is.

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lrkg1234's picture
Replies 4
Last reply 11/23/2012 - 9:12pm

Well, here we go again.  My husband Scott had been on the Dasatinib trial here in Indianapolis.  He is stage four with inoperable tumor in the esophagus as the primary location and liver mets.  We could tell that the drug did not seem to be working and he got a scan early, proving that it was not working.  The existing tumors had grown some, but there was not any spreading.  He was kicked out of the trial and we are in an information gathering state right now, trying to come up with a plan B. 

There have been so many conflicting doctor opinions that it's very difficult to make a decsion.  Here is what has happened so far. 

Dr. Fecher

We met with the melanoma doctor here, Dr. Fecher.  She suggested a PEG feeding tube be inserted before things get too bad.   Sounds horrible and I'm so sorry for Scott having to get this, but he is going to do it the Monday after thanksgiving.  She also sent us to a radiologist to see about getting a few quick zaps in the esophagus to possibly shrink  the tumor.

After we met with the radiologist he suggested a stent now and then possibly radiation later.  He did not seem sold on the radiation - NOT encouraging.  Also a lot to absorb because Dr. Fecher does not like stents.

Dr. Fecher then met with her tumor board at the hospital.  She said the general opinion was radiation would be bad, forget that idea and go for chemo.   It makes me very uncomfortable that she changes her mind on the radiation after previously making the recommendation.  Scott could have easily already had the radiation treatment with the possible damage already done.  Doctor Fecher does not like IL 2 for Scott because she said possible vomitting would be bad on the esophagus/throat.  I thought the chemo would make you vomit too???  She just wants to do the chemo and then somthing else later, maybe another trial or wait and see if he can get into an anti-PD-1 trial or something else.  She has not discussed IPI. 

 

Vanderbilt, Dr. Puzanov

We went to Nashville on Wednesday and met with Dr. Puzanov.  We wanted to get into the Anti PD-1 trial there.   Too late.  All of the slots are filled up.  He thought radiation was NOT a good idea and said to never jump into anything.  He was suggesting IL-2.  Scott is strong enough and young enough to take it. 

Moffit, Dr. Weber

Suggested IPI and maybe radiation later if that doesn't work. 

 

Our opinion

After researching the chemo it didn't seem like the BEST idea.  It could work, but could be done any time so why use it now?  It does not seem like the most promising treatment.    Ideally an anti PD-1 trial would be available, but we need a back up plan. 

The two best treatments seem to be IPI or IL 2.  I prefer the IPI because it takes a while to work.  If the cancer progresses then he might not have time to try it.  Scott is not sure which he would rather do. He likes the idea of IL2 because of quicker results and small possibility of a very durable response.

We want to make a decision and get started on treatment within 2 weeks.  We are going to meet with the other Melanoma specialist at IU named Dr. Logan just to get a second opinion.   Dr. Fecher says that Dr. Logan  thinks chemo is a good idea, but we want to hear it come out of his mouth and not hers. 

We are also going to meet with a general oncologist, Dr. Bhatia  that we had worked with when Scott was first diagnosed.  He is with Community North hospital.  Community  just joined into a partnership with MD Anderson on a cancer collaboration.  Now Dr. Bhatia will have access to the opinions of the melanoma doctors at MD Anderson.  That seemed like a real gift.  It was just announced on Thursday of this week.  Hopefully he will have a suggestion.  When we originally met back in August he had thought that IL 2 was a good idea. 

 

The stress of the decision making period is so horrible.  None of this is easy, but the times between treatment seem to be the hardest.  Any suggestions about what to do are appreciated. 

Lisa (Scotts wife)

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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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