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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Cindy VT's picture
Replies 1
Last reply 6/11/2013 - 8:31pm
Replies by: aldakota22

I know I have been dealing with this disease since 1984, but there are some things long term that come along with it.

One of them is fluid around the heart and lungs.  This weekend I awoke to incredible pain in my back and then the next day Sunday it went around my chest and I could hardly sit back .  I take of all things a gout medicine for this because I'm allergic to all NSIDS.  I talk to my doctor to tell him I would be taking the medicine.  He thought I should come in, but I know if I come in I'm going in to the big House and the last time I was there it was a nightmare.  The big house being the Hospital.  It was so bad last September when I had a heart attack, after 5 days I had my daughter come pick me  up and check me out.  So....I try to deal with things at home. 

Now I am having a reaction to the medicine.  Its called (my spelling is not good) Chochisin.  (I think that is right).  Next week is my 27 year old daughter's wedding.  What a time to get sick.  Oh well if the pain gets bad enough I guess I'll have to go to the big house.  I'm praying I just get better. 

 

Cindy VT

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Hi All,

Dr. Schuchter and Dr. Fecher will provide callers with a recap of the 2013 American Society of Clinical OAs you may have heard, there was a great deal of very exciting melanoma research news announced at last weekend's ASCO annual conference. Please join the MRF on Thursday, June 13th from 4-5pm EDT as Dr. Lynn Schuchter and Dr. Leslie Fecher provide a recap of the latest on melanoma treatment options, clinical trials and research.  Call information can be found on the event page.  Please be sure to register!

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/11/2013 - 12:49pm

Hi - my father has stage 4 melanoma in his lungs.  He was on ippi at Sloan Kettering and after series of treatment the drs decided to put him on PD-1 at Yale (my parents live closer to Yale).  Fortunately he hasn't had any reactions/symptons to both drugs and over the course of the past year (when he started PD-1), 80% of the lesions went away.  Unfortunately we found out about a week ago that 2 lung lesions were seen as progressing and one was found in the rib and one in the breathing tube. So now he is going back on ippi.  Has anyone been through something similar?  It seems as though if ippi doesn't work, the next step would be to go to Nat'l Institute of Health.  Any thoughts/experiences would be very much appreciated! 

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tony9511's picture
Replies 2
Last reply 6/11/2013 - 9:13am
Replies by: buckytom, Muru

Hi just finished my neck dissection for stage 3 melanoma.  I mean I have finished my physical therapy.  My neck is still sore and swollen 2+months after the surgery.  I am scheduled to start interferon soon.  Anybody have a similar situation with the neck nodes swollen after surgery?  Thanks.  I have regained full movement in my arm and shoulder, although parts of the shoulder are still numb.  I had 38 nodes removed.  This surgery was a result of a recurrence.

 

Tony

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Hi everyone,
Well after a hectic ten days or so of making, then rearranging, then again rearranging appointments and treatment schedules I have started on the Novartis BRAF and MEK inhibitor combination trial, as well as starting radiation for the tumour behind my left eye.

Things were really getting rough for me over the weekend just gone, I was suffering dreadful pain around the eye, our family GP prescribed me some Endone but I think that didn't agree with me and I became nauseous and couldn't keep anything much down, finally when I got to the radiation planning study on Monday the doc prescribed me steroids and brought the treatments forward, the steroids had an immediate effect and I am feeling way way better although there is a long way to go with dealing with the orbit tumour.

The first two trial days have been ok, day 1 involved a whole day at hospital being blood tested prior to dosing then taking the tablets (I have to take 3 MEK 45mg and 5 BRAF 450mg in the morning, and another 3 MEK at night), then continuos blood testing throughout the day, I think 6 samples all up, to check uptake of the drug. I basically rested in a quiet hospital room all day, listening to some music and trying to recover a bit from the rough weekend.

So I've now had a grand total of three doses of the meds, nothing to note as yet, there are some potentially nasty side affects on the eyes so they monitor that situation closely with regular ophthalmic check ups. I am just counting down the days until I can get to see my husband and little boy again, they are travelling to be with me just before Easter and over the holiday.

Would love to hear how anyone else on this trial is getting on,
Cheers
Ally

A bad day's fishing beats a good day's work everytime

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ecc26's picture
Replies 3
Last reply 6/10/2013 - 6:28pm
Replies by: Tim--MRF, ecc26, SteveH230

I finished my last course of IL2 5 weeks ago and now must start Ipi due to progression. I have been looking for information regarding side effects of having the 2 therapies relatively close together but have pretty much come up empty. I know you have to wait at least 4 weeks after IL2 to start Ipi, and I'm past that point at 5 weeks.

Does starting Ipi close to finishing IL2 increase the likelyhood or severity of Ipi side effects?

Has anyone else had the therapies relatively close together who could share their experience with severity of side effects? 

Also, anyone who has had Ipi after IL2- were the side effects similar, or did you get completely different side effects with each therapy?

I'm relatively concerned (as are my doctors) that I will have an increased chance of the severe colitis/colon perforation because I had colitis with the IL2. I'm also wondering if having the 2 so close together puts me at any higher risk for the more severe/immune mediated side effects if my immune system is already "up in arms" so to speak (I did have many tumors shrink or dissapear with the IL2).

Any insight or information would be very helpful!

Thanks

Eva

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Husband doing well after the surgery last Thur day. no real side effects but pain from the remaining lymph nodes coming out. Called Dr Zager (Melanoma surgeon) and they won't know Amy more till the Wednesday cancer boarfd meeting. guessing there will be some systemic treatment, pills etc.
Dr Toloza did remove his surgery but we are waiting yo hear from his office what the plan is for thebling cancer. Guessing it would be radiation

my husband is glad no long surgery but down once again as the plan is not known to us yet. plus both cancers are still growing.

I know we have to wait, but open to thoughts or prior experiences.

Thanks Mary

Hugs to all, patients and care givers.

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MJHatch's picture
Replies 10
Last reply 6/10/2013 - 1:45pm

Hi all.  I have been NED for 10 years and haven't been on this board in a very long time. 

My mel was stage III (2.5 on my upper back with a postive lymph node). They removed all lymphnodes in right axilla and none of the others were positive for mel. I also did the entire year of Interferon. 

I just had a "cyst" removed from my left neck and learned that it is CD4 positive pleomorphic T-cell lymphoma.  I have been referred to a radiation-oncologist and have an initial consultation next Wednesday.  In the meantime, I am still waiting for the surgeon and/or dermatologist to return my calls.  I have a lot of questions and am getting really frustrated with the lack of response. 

My question:  Has anyone here had melanoma then lymphoma?  This T-cell Dx is apparently pretty rare.  I find it ironic that the lymphoma was also diagnosed in the skin (so far at least).

This board was so helpful to me back in the early melanoma days, I hope I can find a Lymphoma resource that is even half as good.

Thanks for any info you can provide!

Mary Jo

“Live simply, Love generously, Care deeply, Speak kindly.”

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flvermonter's picture
Replies 5
Last reply 6/10/2013 - 5:46am

Hello,

 

My husband had the radical lymphdectomny on Thursday at MOffit in Tampa.   Dr Zager advised that he "..has alot of disease".  I asked what the prognosis is and he said "fair".  Also, that maybe he should not have the surgery to remove the lung cancer stage i.  He was going to talk to his thorasic surgeon.  I just went on the Moffit site and his appt for the surgery has been removed.  However, the   pulmanary and CT scans are still set for next week.

 

On Thursday after the surgery, Dr Z said he had ordered testing for genes and mutations.  Our appt with him is not until 6/24.  I think i will call him on Monday and ask the questions I am asking here.

 

When he said he had alot of disease, he went on to say some people have genes that impact how melanoma spreads and the speed at which it does.  He said that maybe do radiation for the lung and he could go locally for that (Moffit is 1.5hrs one way for us).  I am "assuming"  the gene testing will determine which treatment he will get in pill form. 

Again I am scared and did not tell all the information to my husband.  He does not know yet the surgery has been cancelled for the lung.  I thought I would wait till Monday when we can talk to the dr.  Why worry him over the weekend when we can't talk to them. 

Question, why not do the lung surgery?  It was all set to go.

What did he mean by " has alot of disease"..  I know these may sound lame, but there is still so much I don't know.

 

Thanks and hugs to all, Mary

Hugs to all, patients and care givers.

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patrick mccarthy's picture
Replies 6
Last reply 6/9/2013 - 11:14pm

Hi everybody I'm new here. My brother was diagn osed with stage4 melanoma . He also has an 8 NM met to the brain I'm confused on research and how to help any suggestions would be great. Thank you

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JoWen's picture
Replies 2
Last reply 6/9/2013 - 7:41pm
Replies by: hbecker, JerryfromFauq

Just an update since I last posted about Joe's scheduled MRI and CT.

Joe's results came back on the MRI of the brain and CT of Chest, Abd and pelvis, and I am so relieved to report that all was negative.  There were two adenomas noted on the adrenal gland, which showed no concern at this time, but will continue to watch.  The BRAF was reported to be negative for mutation.  The additional biopsy that was done by the Dermatologist 2 weeks ago came back as negative and she stated it was a "blue mole"

So for now Joe remains at stage III, with NED....we continue to be diligent, knowing that changes can occur at any time.  He will continue on the "observe" interdisciplinary plan between surgical, medical oncologists and dermatologist every three months with repeat cxr/ct

Wendy

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ecc26's picture
Replies 5
Last reply 6/9/2013 - 7:39pm
Replies by: JerryfromFauq, NYKaren, ecc26, POW, Anonymous

Hello,

For those who haven't seen my earlier posts I'm a stage IIIb who progressed to stage IV last fall. I completed 3 courses of IL2 and all seemed to be going well until a week after the last course when new tumors started to sprout like weeds in my subQ. 3 or 4 weeks later a CT showed that despite having 15 new tumors, nearly all of them were subQ with only 2 very small masses on the surface of the lung. In preparation for exploring the possibilities of clinical trials an MRI was done which unfortunately found 7 brain mets. This has disqualified me from trials for the time being and the recommendation was to begin whole brain radiation (too many mets for surgery or gamma knife) and Ipi at the same time. This will begin on Monday.

My question of the moment is regarding BRAF: Apparently both my local oncologist and the specialist who administered the IL2 each tested me seperately for the BRAF mutation. My local oncologist recieved a BRAF negative report while the specialist recieved a BRAF positive report. When my local oncologist asked the speicialist about the contradicting reports the specialist told him it happens about 15% of the time that testing different parts of the same tumor will give different results. Has this happened to anyone else? Does it have any implications on the possible effectiveness of the BRAF inhibitors? Any insight anyone has would be helpful as I would like to know if I can use the BRAF inhibitors should I need them.

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Anonymous's picture
Anonymous
Replies 0

Severe body rash after5 days on full dose Zelboraf. Stopped x 1week, resumed half dose. Rash continued, low grade temp., swollen knuckles. Had to stop again. Anyone had similar experience? Able to stay on Zelboraf? Anyone try prednisone or other treatment? Thanks in advance, Jean

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bikerwifee's picture
Replies 2
Last reply 6/9/2013 - 2:37pm
Replies by: Tina D, lrkg1234

My husband and my best friend passed away Wednesday at home surrounded by his family and best friend. No more struggles and no more pain.

Lynn was a biker and a cival war reenactor and a veteran so what a send off he had. He was buried with his biker colors and escorted to grave site by a mile long of nothing but bikers. The thunder rolled.

Lynn was saved so I know he rest safely in the arms of jesus. Dont every give up Lynn fought till the end. Thank you all for the support and love.

God Bless
Belva

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