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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mrsmarilyn's picture
Replies 8
Last reply 2/6/2012 - 10:00am
Replies by: mrsmarilyn, jim Breitfeller, jag, Gene_S, Anonymous

Hello

My last post was pretty dramatic as we were told that the only way to reduce my brother's tumor on arm was amputation.  He did not  do that - and went with radiation for two weeks instead and he is getting reduction.

 

After the radiation, Sarah Cannon is suggesting a new clinical trial - AMP targeting PD 1 - instead of Yervoy?!  His tumor is very large in his upper arm and has three very very small spots elsewhere.  I know Yervoy is slow to respond - but this a new clinical trial is a Phase I -  it is a difficult decision.  The targeted pathway is described on several websites.

 

Is Anyone planning to be on this clinical and also what do you think about this brand new approach vs. Yervoy.  He has already exhausted Braf targets with an excellent outcome over 24 months except for this tumor in shoulder/arm that the Braf/Mek did not touch.

 

Thanks-and he is glad he kept his arm - but wants to remove the large tumor.  Best wishes and prayers - we are not giving up!! (as our dear friend Amy Busby told me)!!

Mrs Marilyn

sister of Gary Stage IV

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yoopergirl's picture
Replies 9
Last reply 2/7/2012 - 6:47pm

I am stage lv with a braf negative but have never been told much about it. Right now am doing the Yervoy, 3rd treatment coming up on the 20th. Last year had interferon for the month and quit beacuse of all the side effects it gave me, Yervoy is giving me itching but that I can handle. If someone can steer me to good site about Braf I would appreciate it. My oncologist is 120 miles from me so it isn't like I could just pay him a visit but need to write down things to ask on the 20th. 

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lhaley's picture
Replies 5
Last reply 2/6/2012 - 10:10am

I am so greatful for all that has happened. The tumor ended up being deeper and while shrinking the Dr agrees that this was the perfect time to get it out now. .  There is still edema and will take time but will improve.   He was able to remove the tumor!!!!

I get to come home tomorrow!  It will take time. They steroids are still high but have taken it down some. They also are antiseizure.   I'm already off of pain pills!  It does sound like a little more radiation will finish it off. I guess that's discussed in a few weeks.  I've been put in a trial for the dura liner so I get a little closer attention which is fine.

I probably won't be online much, Just vegging out. 

Linda

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Jeff's Mom's picture
Replies 20
Last reply 2/10/2012 - 8:53pm

After almost 1 year of being NED, my son has now developed tumors in both liver and lungs.  Although I don't post often, I am always checking out this board.  I am sure I will be posting a lot more since I have so many questions about the therapies Jeff may soon face.  This board is a great source of information, but also a great place to find hope and strength.  My son has those in abundance!

Jeffrey will be starting IL2 very soon, and I know Jane from Maine has a great on-line resource (which I scoured for information), but any other information about others' experiences with IL2 would be greatly appreciated.  Any complete responders out there?  We are so hopeful Jeff will be one of the lucky ones.  If not, we do have a system in place for further therapies (he has the BRAF mutation).  It's scary to think that this treatment won't work, but I guess that is what we have to face - what to do next if it doesn't work and how to do it fast.

I am interested in anti-PD1 trials - it looks very promising and seems less toxic than Yervoy.  I know Lynn is on an anti-PD1 trial with Dr. Weber at Moffit.  What are your side effects?  I know you are doing well...complete response?  Anyone else on anti-PD1? 

I guess I will try to post more often as we travel down this road...it's one I never wanted to be on. 

Thanks in advance,

Jeff's Mom

 

 

 

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Had some scans last week that came back somewhat inconclusive.  MRI showed a few spots in the thalamus and some areas near the tumors that were removed from my brain that were "enhanced" after the injection of the dye, but PET/CT said "No suspicious hypermetobolic lesions detected".  If it is cancer, I would like to know if any of you out there have used Yervoy (ipi) for brain mets?  Is Yervoy being administered only in clinical trials or can I get it from my oncologist?

I've read that Yervoy is a large molecule  (and thus won't pass the blood brain barrier), but then again I see that it has been used with some success for some people with brain mets.  Apparently the white blood cells are still able to cross the blood/brain barrier.  

Your thoughts are greatly appreciated.  Going through some hard times not knowing.  

 

Thanks, David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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Ali's picture
Replies 6
Last reply 2/6/2012 - 10:21am

I finished 10 bags of IL2 on Friday.  I had the usual side effects and gained 22 pounds.  They said I would loose the weight quickly, within a few days.  Now over 24 hours later I have only lost maybe 2 of those pounds.  I am on lasix, and I feel like I urinate maybe my normal amount.  Just wondering if the fluid loss starts to pick up here in the next couple days, of it I should be worried.  It is pretty uncomfortable, but if I thought it might be normal I could stop worrying about it.  Thanks so much, any experiences of how long it took to shed the water appreciated!

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Mike N's picture
Replies 10
Last reply 2/7/2012 - 12:46am

January is my 11 year anniversary of having my 0.85 Clarks level III biopsey, and 0.93 surgical removal depth mm removed.

SNLB was negative.

I have been fortunate to be NED all this time. Just want to add my anniversary here to add a little hope for others that may have been recently diagnosed with similar mm depth.

All my best to everyone fighting this terrible monster of a desease.

Mike N

It's about today

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bruski1959's picture
Replies 6
Last reply 2/20/2012 - 8:25pm

The Yervoy was shipped via Fedex and arrived at the hospital this morning by 10:30 AM. Pastor's wife Virgie took Jackie for her appointment. They took an x-ray of her port, and they will do that before every infusion apparently. My class in Schaumburg, IL got out at noon, so I got to the cancer center a little after 1 PM, and was able to relieve Virgie. They gave Jackie benadryl and a couple of anti-nausea medications prior to the Yervoy, and then transfused the Yervoy for 90 minutes, following by a flush. So we got Jackie home a little after 3 PM from her noon appointment. The benadryl made her sleepy, so she rested when we go home. So far there doesn't seem to have been any side effects, but we will keep an eye out for them.

Jackie's next infusion is scheduled for 2/24. Jackie goes back to the Cancer Center every Wednesday for blood tests.

 

We're glad to have have finally gotten Jackie started on the Yervoy treatment. We're praying that Jackie tolerates the treatment well, that the Yervoy slows down the melanoma, and shrinks the melanoma tumors.

 

Thanks for your thoughts and prayers!

 

Bruce and Jackie

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Lisa13's picture
Replies 2
Last reply 2/3/2012 - 11:51pm

If anyone deals/knows about ipi or those amazing U.S Dr's who know a lot about it, I really need help.

On my 16 week scan, I had 50 percent shrinkage and disappearing of my lung mets. At the end of nov, 2 weeks after gamma knife for 2 brain tumours, my lymphocytes were extremely low, as well as other blood results were out of whack and k believe this was the time the mets started to grow a bit. Now, my lymphocytes are 1900 and I have marginal growth and now 2-3 abdominal lymph nodes swelling. (which is obviously new).

how do we know this isn't inflammation from ipi and my body is back to doing what is was doing before? Because ipi worked forme, I'm going back on it, but I wish I knew a dr. that knew everything about this drug, so we may know some answers. Even my own dr. has no way of knowing for sure. Having the brain mets removed from gamma was great and 1 is actually gone, but right after this, things changed for me, so I guess I just really need to understand.

Anway, gamma knife is on tuesday and I'm going on ipi again 1-2 weeks after gamma.

I also want to know if anti pd-1 is accepted for people who have brain mets.

lisa

Many impossible things have been accomplished for those who refuse to quit

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LynnLuc's picture
Replies 1
Last reply 2/3/2012 - 8:50pm
Replies by: Fen

 

I would like to thank everyone for the outpouring of support that you all have shown my mom today. She is doing quite well in ICU right now, and is about ready to go to sleep for the night. We will keep everyone posted tomorrow! Thank you all again.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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mob's picture
Replies 1
Last reply 2/3/2012 - 10:35pm
Replies by: bcl

 

 I hope you will help Canada move forward on this important child protection-skin cancer awareness initiative and vote for a federal law ( The industry reps have already called out for support to oppose the pediatric society.. let's show them we care about this global issue too.. 

 

Please click on link ( or copy and paste) and vote...thank you!  linda ( bcl.. spam filter hates me) 

 

http://www.cbc.ca/news/yourcommunity/2012/02/should-minors-be-banned-from-tanning-salons.html

 

The Canadian Paediatric Society (CPS) published a position statement Friday calling for a countrywide ban. 

"This is a serious cancer risk, and children and adolescents are not fully aware of the risks they are taking when they step into a tanning bed," said Dr. Richard Stanwick, the organization's president-elect and co-author of the statement.

Currently, only Nova Scotia and Victoria, B.C., outlaw those under 18 from using tanning beds. New Brunswick has voluntary guidelines that keep kids out of tanning salons. 

The CPS says 25 per cent of Canadian youth between 13 and 19 years have used a tanning salon.

The World Health Organization, the Canadian Medical Association and the Canadian Cancer Society have issued similar statements about yuong people and tanning. 

Should minors be banned from using tanning salons across Canada? Or is leaving the issue up to provinces and cities enough to protect children? Let us know what you think. 

 

 

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Anonymous's picture
Replies 1
Last reply 2/4/2012 - 6:31pm
Replies by: Janner

Hi all, I have had Melanoma since 2006 and thought that it was insitu, well it wasn't in Nov of 2010 it had spread to my forearm from my finger and so far have had 5 surgurys including all my lymph nodes removed under my left arm and was doing pretty good until I had interferon last Feb, made me so sick that I could not continue once I got home. So it was just watch and then the end of this past November had another lump appear on my arm and my surgeon removed it and the report came back Melanoma. He sent me for another Pet Scan, my last one was 6 months prior to that and it was clear. This time it was not clear the cancer has spread to  my lungs and am now on my second round of Yervoy. I am so hoping for good results with this drug because I figure this is the only thing that will help me... I am having some itching with this so far and the doctor is very pleased with my progress, such as blood work and chest xray but really don't want to get my hopes up too high. I am trying to research on being Braf Negative but so far haven't had much luck, would someone here be able to help me?  I am 68 years old but very active and I feel good , a person would not know that I have this horrible cancer growing inside me.  I have been reading alot of posts here and it seems to be a good place to be (not that we want to be here).  Thanks  

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James from Sydney's picture
Replies 1
Last reply 2/3/2012 - 4:24pm
Replies by: bcl

Send this article to your local poilticians and hopefully they will follow.

best wishes

James

http://www.smh.com.au/national/health/sun-sets-on-ultraviolet-tanning-be...

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LynnLuc's picture
Replies 6
Last reply 2/3/2012 - 5:44pm

 

Good News!

We saw my mom a little while ago, and she is extremely excited to say that she has no speech issues! She feels clear headed and can even see better. About as good as we could hope for at this point. She should be in a room soon, and hopefully she'll be making the next update here. Thank you all for staying in touch with us. I've forwarded the messages to her.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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