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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buffcody's picture
Replies 6
Last reply 3/12/2013 - 4:18pm
Replies by: kylez, audgator, buffcody, Anonymous

I'm 10 weeks out from my last ipi infusion but my itching and rash has reached their height (I hope) the last week or so.  My doctor's office has recommended Sarna, though they also earlier had recommended an over the counter cream containing cortisone.  I wonder if any of you have had similar long term side effects after ipi and if you found some other over the counter product that gave more relief. Or prescribed?  I'm trusting that still experiencing these kind of side effects after 10 weeks eans that my immune system is still actively fighting the melanoma not just giving me problems.  Next set of scans in two weeks.

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First Thanks to those that responded to a previous post about Yervoy reaction. AS stated make sure your Doctor knows Yervoy. My wife suffered because  the doctor we used was not experienced. I gained more knowledge her than my wives doctor knew about Yervoy. Thanks to all who educated me on Prednisone, Endicott, Remicade. Great help.

My question for those that have taken high doses of Prednisone  80 to 100 mg.  how fast were you able to reduce in order to resume Yervoy treatment? I have been told it needs to be reduced below 10MG to get a dose. My wife went to 80mg to settle her reaction to Yervoy first dose. How fast has anyone reduced after stable reaction.

 

Thanks,

Daniel

Trust in God - Live one day at a time

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Amanda's picture
Replies 6
Last reply 3/27/2013 - 11:20am
Replies by: Anonymous, Amanda, Pat-Wife of Carl, Tina D, POW, Owl

March 9th, 2012 randy was diagnosed stge IV, with no primary.  Lung  and brain lesions, and another tumor in chest wall.   Today marks a year, and he is still here.  Man it seemed like that year flew by...He first had radiation and a craniotomy, followed by the rest of the radiation, then yervoy...now he's had two doses of merk Anti-pd1 and is doing great.  Tumors  have stabalized.  Plus, we just took a 3 day trip to las vegas.  I pushed him up the stirp and through the casinos in his wheel chair, because there's no way he could handle that much walking. (He's still not been able to gain a lot of muslce back after losing a ton of weight from a tumor obstructing his bowel.)  Vegas is kind of wheel chair INCONVENIENT ...not in accesible...but a pain in the butt!  It was worth it though.  Hope everyone is doing well out there tonight.  good health wishes sent to you all.

-Amanda-

"Give thanks in all circumstances"

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Cielo's picture
Replies 6
Last reply 3/10/2013 - 11:00pm
Replies by: Cielo, kylez, POW, Janner

Can anyone who had these kinds of treatments please tell us about it? My husband has brain mets and we would like to be informed ahead of time before we see doctors next week.  These were suggested by our Oncologist for possible treatments.  We have sleepless nights, trying to decide what's best. We haven't lost hope and my husband wants to keep fighting but can he endure the treatments.  He is 66 years old and very weak.  He has been on Zelboraf for eleven months.  MRI lately showed metastases to the brain.  Scans on chest, pelvis and abdomen showed healing and stabilizing.  Thank you.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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tony9511's picture
Replies 8
Last reply 3/12/2013 - 8:26am

I am due for my second surgery in less than a year.  The melanoma came back on my right shoulder, the said it was stage 2 clark level 4 when they did the WLE at the VA the first time.   Now its back, don't know the depth etc.  I am just frustrated and very depressed......and very depressed for anybody that has to battle this cancer.  I guess everything happens for a reason right?  I have thousands of questions in my mind.....what if I was stage 3 etc the first time.  I do trust my oncologist, but you always wonder when its the VA.  I had a resident do the punch biopsy.  Anyway just rambling.  God bless anybody going through this. 

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doro's picture
Replies 7
Last reply 3/16/2013 - 11:02pm

Hi all,

 My dad (in his 60s, Stage 3c) came down with diverticulitis after a week on interferon; fortunately, antibiotics seem to be working to reduce the inflammation. The oncologist said he can't be sure that interferon is not the culprit so he doesn't want Dad continuing with it.  This leaves us wondering about possible treatment options and, as a secondary question, how this recent illness may affect his ability to get into clinical trials. It seems like side effects for most treatments involve potential bowel/intestinal issues (e.g., ipi and colitis). We are supposed to talk with the oncologist again in a couple weeks when the inflammation has further subsided.

Does anyone have any experience with diverticulitis or thoughts/suggestions on how to procede or ideas to bring up with the oncologist? We know at his current stage there aren't a lot of approved treatment options. There don't seem to be a lot of clinical trials out here - there are a couple for ipi (vs interferon) and braf/mek (with a placebo) but we aren't sure those seem appropriate.

Thanks!

Doro

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mark d's picture
Replies 5
Last reply 3/9/2013 - 8:44pm

I was diagnosed with nodular mel. on Feb 1. I had surgery on the 27th to remove my earlobe and SNB in my neck. Well one node came back positive and I have to get my neck completely cleaned out now. The only treatment I am authorized is interferon because the Army only approves that right now. I just want to know how others have reacted with this treatment. How sick were you. How successful were you. How many treatments were given. Since my Mel was on my ear it is kinda difficult to treat with conventional methods. Thanks for the info and this site for support.

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eric w's picture
Replies 20
Last reply 3/26/2013 - 12:37am

Hi my wife found out she is BRAF negative. Can someone point me in a direction of new drugs targeted for negative types besides Yervoy, IL-2, PD-1...just trying to stay ahead of the curve if the Yervoy that she is to likley start in a few weeks does not work...first choice if it does not would be PD-1 likely...but just trying to figure out other options for negative types. Thanks

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sgrain's picture
Replies 4
Last reply 3/28/2013 - 10:25pm

Hi all. It's been years since I've posted as I've been stage 3 since 1998. Now stage 4, lung nodule removed in right lung last year, now new tumors in right and left lungs. Did 3 months of yervoy and tumors spread in both lungs. Started zelboraf and after 8 days stopped due to severe rash. A week of steroids then half dose of zelboraf for a week. AST (liver functions) test went from 25 to 382 so now half of that dose (1 pill twice a day) and still have the rash. I have a pet scan next week and my question is, if liver function test still high and not much improvement, what is next? Anyone know of good trials going on when both yervoy and zelboraf fail? Getting really scared now.

Much luck to all in beating this thing?

Sandy

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Hi all. It's been years since I've posted as I've been stage 3 since 1998. Now stage 4, lung nodule removed in right lung last year, now new tumors in right and left lungs. Did 3 months of yervoy and tumors spread in both lungs. Started zelboraf and after 8 days stopped due to severe rash. A week of steroids then half dose of zelboraf for a week. AST (liver functions) test went from 25 to 382 so now half of that dose (1 pill twice a day) and still have the rash. I have a pet scan next week and my question is, if liver function test still high and not much improvement, what is next? Anyone know of good trials going on when both yervoy and zelboraf fail? Getting really scared now.

Much luck to all in beating this thing?

Sandy

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kkhalsten's picture
Replies 12
Last reply 3/11/2013 - 11:51am
Replies by: kkhalsten, Janner, dian in spokane, Anonymous

Hi, in 2009 I was diagnosed with a thin melanoma on the back of my left leg upper thigh- I had a wide local excision and sential node removal with pathology stating sn was benign...great! Then on 1/1/13- I found a lump on my left groin which grew within 1 week from a marble to small apple....went to the cancer center- had a PET scan - no other "areas" lit up except for the groin- then had surgery lymphadenectomy 3 weeks later and the pathology reads as this:

 B *skin and subcutaneous tissue, left superficial inguinal; dissection: postivie for metastatic melanoma in subcutaneous tissue- see comment:

there is a 4.5 cm composed of metastatic melanoma surrounded by lymphocytes and fibrotic tissue within this lymph node dissection. It is unclear if this nodule represents a lymph node completely replaced by melanoma or a subcutaneous metastasis.....

 

B. seventeen lymph nodes negative for melanoma (0/17)  and benign skin with scar of operation...GOOD NEWS!

 

So, my question is: I understand the actual melanoma node was unclear and the 17 extra nodes they dissected were benign- so  now I'm stage 3 NED- but the oncologist stated to me that there is possible metastasis due to the unclear pathology of the 3.4cm node....

 

does this make any sense? I'm so confused!

indecision

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Tina D's picture
Replies 4
Last reply 3/12/2013 - 8:41am

Just an update on what has been going on with me. One day after my third ipi treatment, I developed a headache ( which is an unusual thing for me). The first few days I figured maybe it was sinus related, but after the 5th day, hubby insisted I call St Louis. Over the next 23 days, it quickly worsened, even to the point of extreme light sensitivity and nausea and vomiting. Nothing I took helped at all. It became a 24 hr/day thing. During that course of time, an MRI of my brain was done and it was negative. When I went for my 4th ipi treatment, the Dr decided not to go ahead with it until he ruled out serious side effects. Labs done that day revealed endocrinopathy of my pituitary, and it was concluded that was the cause of the headache. I was started on 60 mg of prednisone and by the following day, the horrible headache was history!! YAY! As more labs came in, I received a call saying that they would not be giving me the 4th treatment at all. I was disappointed ( I was very geared up to "make it through all 4" and this felt like failing, I suppose), but the nurse quickly explained... "But, you don't NEED it!" The goal of the ipi is to get your immune system ramped up, and yours IS now ramped up. The endocrinopathy is an immune response. We dont want to get it any more ramped up than it is right now, or you can end up with serious autoimmune problems." . So, my labs are being monitored here at home in Indiana ( this has apparently affected the pituitary hormones that stimulate the thyroid and adrenals) . I may be started on Synthroid at a future date, just depending on the labs. I am being slowly tapered off the prednisone... now taking 30 mg/day. So far, doing great. I have been feeling wonderful and enjoying very busy days here at home. My first post-ipi PET scan is ordered for 3/20. Leaving it in God's hands and trying to always focus on the  blessing of this very day with my family.  I am sure the scanxiety will inevitably come as the day draws closer, but for now, I have been blissfully busy and feeling very well. I have not been on here much lately and apologize for taking so long to update. I am nearly constantly aware, however of the daily struggles faced by so many on here.... even on these days when I am feeling so well. 

Thanking God for the day,

Tina

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Cielo's picture
Replies 5
Last reply 3/12/2013 - 8:54am
Replies by: Tina D, POW, Cielo, Anonymous

Scott has been on Zelboraf eleven months today,and while  "Z" has been taking care of shrinking and stabilizing  the mets to the rest of his body, it couldn't protect the brain. Unfortunately, the result of the MRI showed extensive leptomeningeal disease has developed.   We really didn't know what it means but it was explained to us that lesions were in the liquid part in the intracranial part of the brain.  I'm not sure if I got the exact layman's terms here.  In other words...Brain Mets?    Got a call from the Onc's office today to meet next week for possible treatment with the Radiology Oncologist, Neurological Oncologist? and later Neuro Surgeon.  It was suggested WBR . Gamma knife.  I have been teaching my husband the terminologies I have learned from this site, it's all new to him of course, it's all new to me too, but he won't forget NED.  My problem is, he is too exhausted and too weak to fight anymore.  He doesn't like to hear the words radiations and trials....and I don't know what else is there for him.  So sad.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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Mickey n Jo's picture
Replies 18
Last reply 4/13/2013 - 8:43am

Hi everyone. As I stated in a previous post, my husbands most recent Pet scan suggested multiple tiny brain mets. This was comfirmed by a brain MRI. His melanoma specialist feels that at this time, it would be too debilitating for him to have WBR, she also feels that Yervoy is not an option, since he suffers from gastrointestinal issues ( including a previous bowel perforation). A clinical trial is also off the table since traveling and time commitment would be too much for him right now. His Dr. wants to put him on dabrafenib as soon as it is approved, which she says hopefully will happen within the next two months. For now, he is still taking Zel, 3 and 3, which seems to kind of keeping things in check, but for how long?  I am terrified that things will progress before dabrafenib is approved. We have fought so long and so hard, I just feel like we should be doing something proactive, and not just waiting for it to be approved. So please, anyone with any info on approval time or compassionate use, respond to my post. You have all been a great source of info in the past and I thank you all.

                                                                                                                                      Jo

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