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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prh126's picture
Replies 17
Last reply 10/26/2011 - 8:44am

I am recently diagnosed with Stage III after completing two surgeries - First: two sentinel nodes were microscopically involved - Second: 13 other nodes, including Cloquet's, were clear  -

CT body scan and MRI brain were clear.

My oncologist at MDA called Friday afternoon - I did not match cell type for his clinical trial - he recommended close observation (every 3 months CT and MRI) with an option to do Interferon immunotherapy.

From what I've read, Interferon is very controversial - limited benefit with potential toxic side effects - does anyone have experience with Interferon?

Thanx and God Bless - 

Paul

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patsy123's picture
Replies 1
Last reply 10/24/2011 - 7:00pm
Replies by: NYKaren

Has anyone been given advice by their doctor on taking vitamin d supplements while on Yervoy? If so, how much to take? I know there are studies on whether vitamin d is helpful in fighting melanoma, but wasn't sure about how much to take, if any, when starting Yervoy.

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patsy123's picture
Replies 10
Last reply 10/26/2011 - 9:58pm

Has anyone been given advice by their doctor on taking vitamin d supplements while on Yervoy? If so, how much to take? I know there are studies on whether vitamin d is helpful in fighting melanoma, but wasn't sure about how much to take, if any, when starting Yervoy.

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kristine's picture
Replies 7
Last reply 10/24/2011 - 10:42pm
Replies by: Gene_S, kristine, Anonymous, Bubbles, nickmac56, NYKaren

My Husband has Stage IV Melanoma.  I was recently contacted by a physician who declares the only way to recover is this "Gerson Therapy".  Does anyone have any advise/knowledge/comments about this?

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heg50heg's picture
Replies 3
Last reply 10/23/2011 - 4:49pm

after being off interferon for 3 months I have found a small lump in my neck just below my chin on the left side. I am currently stage 3 and only took interferon for 3 months as I had to quit the drug because of the side efects. I developed a bad case of pancreatitus and my Dr. decided that interferon would not be a good thing to start back up after I got over that 3 months later. So my question is can melanoma come back that fast and could the lump in my throat be melanoma. It is about the size of my finger that I can feel.

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/23/2011 - 2:38pm
Replies by: Jan in OC, Gene_S, JerryfromFauq, lhaley, Anonymous

Jan,

 

I hope things are going well. I am a little worried that you have not posted for awhile.

 

Anyone heard from Jan?

 

Mary

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Drew N's picture
Replies 7
Last reply 10/26/2011 - 7:52pm

I had my usual checkup with my onco at MDA. He ordered a pelvic/abd CT because he felt like my surgical site... well, let's just say I think he was being overcautious. Even though I really didn't believe anything was wrong, what with good bloodwork and nothing I could feel, I went through the usual gamut of crud. I got my results within 24 hours, though, and everything's fine.

Stage IIIB and almost 3 years out from them pulling a bad node with nothing since. I don't ever feel like I'm 100% safe, but I DO believe that every tomorrow I see gets me closer to the day when a kickass treatment is found. Until then, the curcumin seems to be working.

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Drew N's picture
Replies 0

I had my usual checkup with my onco at MDA. He ordered a pelvic/abd CT because he felt like my surgical site... well, let's just say I think he was being overcautious. Even though I really didn't believe anything was wrong, what with good bloodwork and nothing I could feel, I went through the usual gamut of crud. I got my results within 24 hours, though, and everything's fine.

Stage IIIB and almost 3 years out from them pulling a bad node with nothing since. I don't ever feel like I'm 100% safe, but I DO believe that every tomorrow I see gets me closer to the day when a kickass treatment is found. Until then, the curcumin seems to be working.

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Anonymous's picture
Replies 13
Last reply 7/21/2012 - 1:39pm

My daughter is currently planning to joinIng the current Stage 3 Yervoy trial, assuming we are lucky enough to get it. We have two questions for current  participants:

1) She just got a second opinion and we learned that the trial dosage of ipi is a lot higher than the approved dosage used to treat Stage 4, making it quite a bit more toxic. 15% supposedly get a severe reaction. Has anyone experienced this and had to drop out because of the toxicity?

2) We have heard so many stories on this site from people who took lnterferon and relapsed during the treatment or shortly after. This is one factor in my daugther choosing not to take it. We haven't come across any similar stories for the ipi trial participants. Since there isn't data available yet on relapse rates, we'd appreciate hearing about relapses during or after ipi treatment, or better yet, hearing about staying NED after treatment.

Thanks for any information you can share with us.

BC

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AlisonC's picture
Replies 10
Last reply 10/31/2011 - 7:07pm
Replies by: mombase, azurliene, jag, lhaley, Anonymous, shellebrownies

Hi MPIP people,

I used to spend a lot of time here ( started trying to have a baby and it was easier to get some mel distance) but had hoped to return later this month to announce 10 years NED (which still might happen if my insurance company stops trying to dodge the scan fee and it goes ahead). Instead, I'm back looking for information on post-surgery options for a good friend and colleague who this week progressed to stage IV with 3 brain mets. He had a large primary (not sure of breslow) removed from his scalp and bilateral neck dissections for micro mets 2 years ago. GM-CSF since. Just this week, 3 small brain mets detected after sudden nausea and pain. No visceral mets according to the PET so they will resect 2 of the mets and do SRS (I believe) on the 3rd.

I'm so out of the loop on adjuvant treatments for stage IV Mel (which I promised myself I would never do....even after 10 years I am not complacent since my own stage III met came 9 years after my primary) so any advice you have on post-surgery options would be very welcome. Any positive outcome stories would also be very welcome I'm sure, to give him some all-important hope.....

Sorry to "take" when I haven't been "giving" on this board much of late.........

AlisonC
NED since 2001

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Charlie S's picture
Replies 11
Last reply 10/23/2011 - 11:10am

I sense a bunch of esoteric bullshit relative to Yervoy,  I  would ask anyone, particularly the MRF to give an actual  definition of what constitutes "unresectable Stage III Melanoma" ?

Simple question, and I am soooooooooooooooooo looking for that answer.

Personally, I think the term/phrase  is nothing but a bunch of pimped up horse shit  for appeasement, because this definition is not affording, but rather denying STage III patients a option for a way forward.

 

Anyone?

 

Charlie S

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Karin L's picture
Replies 5
Last reply 10/23/2011 - 12:50am

I finished my last bag/4th week of IL2 on June 14.  Within a few weeks I noticed some vitiligo on my hands, forearms, and a spot on my face. That was it until yesterday when I noticed a large area on my inner thigh (size of a lemon) that just showed up.  It's been 4mos.+ since treatment.  Anyone else have this happen this long after treatment?  Just seems...strange. 

Thank you for any and all replies.

 

Karin

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I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

When he finally complained of feeling dizzy and having a headache late Wednesday night, I called his oncologist. He recommended I give him a dose of steroids and see how he is doing in the morning.If he was better, then he should go to his radiation appointment as normal. If not, I should bring him in to Mass General to be admitted. Yesterday morning he was no better, in fact, his sense of equilibrium was completely shot and he was drifting in and out of sleep.

Long story short: He has brain edema and they suspect that at least one of his lesions is bleeding. As of today, he had bounced back a bit (was awake and alert, but his short term memory is still completely shot ) due to the steriods they are giving him. Dr. Lawrence came in today and told me that, with the new setback, he doesn't think that Don's cancer is still curable, that the progression is just too far ahead of any treatment they could provide that might heal him.

And before people tell me we shouldn't take that for an answer and to get second opinions... I think he's right. Don's cancer has always been very, very aggressive. I won't be at all surprised to hear that the new MRI they are doing today will show more mets, bleeding, etc. Even with continuing steriod and radiation treatment, it seems highly unlikely they are going to be able to get ahead of it before it's done too much damage to be repaired, let alone let him live long enough to wait for ipi to take effect.

I don't yet know prognosis based on what is going on now (that we should know as soon as they get a good MRI).

This has been a difficult week; I would really appreciate your prayers and good thoughts right now.

Thanks; you all are awesome!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Anonymous's picture
Replies 5
Last reply 10/23/2011 - 3:41pm
Replies by: Anonymous, LynnLuc, Bubbles

Hi,

I am a newbiew to this site. I am stage 4 & waiting for an anti-pd1 trial or anti-pdl-1 trial to open. I have not done yervoy so this ismy first immunology treatment.

There are a few manufacturers (Curetech,Genetech, BMS & Merck) all coming out with anti-pd1 oranti-pdl-1 trials by the end ofthe year.

Does it matter who the manufacturer of the PD1 drug is? Will Curetech PD1 drug be as good as Merck PD1 drug  or BMS anti- pdl-1 drug. I guess what I am asking you, are all anti-pdl-1 &anti-pd1 drug equal and it does not matter who the manufacturer of the drug is?

Also, how does the pdl-1 &pd1 drug work? Does it work like IPI and does it take weeks for PD1 drug to work? Will there be tumor shrinkage soon after starting drug?

Do ALC go up if you are a responder to pdl-1 &pd1?

What are the signs that indicate you are a responder besides tumor shrinkage?

What are the side effects of pdl-1 & pd1? On one of the trial consent form that was given to me, it stated a side effect could be a lowing of white blood cells. That is very differenct than Yervoy where the ALC goes  up.

Any information about anti-pd1 (pdl-1) would be extremely helpful so that I know what to expect.

Thanks  so much

 

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DonnaK's picture
Replies 19
Last reply 10/17/2012 - 5:47pm

Hi. My husband was diagnosed with Melanoma (2.55mm thickness, non-ulcerated) on his chest  in July.  A follow-up WLE and SNB revealed 4 of 6 microscopic tumors in his lymph nodes, tracking to both his left and right armpit. He has since completed two completion node dissections and enrolled in the interferon vs. ipi trial.  We were really hoping he would get chosen for the ipilumimab trial but unfortunately, he lost the lottery and is scheduled to begin Interferon on Monday.  I want to make sure I'm doing to right thing by encouraging him to stay in the trial.  I've looked at all the Interferon data and I'm unimpressed, but I also can't imagine doing nothing.  He is 36 years old, and a father of a 2 year old and one more on the way. 

I've read through past posts which have been incredibly helpful, but I'd love to hear any words of encouragement as to why he should stay in Interferon side of the trial.  Also, his doctors are implanting a port on Monday since he isn't supposed to get blood drawn from either arm.  We're curious how standard this practice is and how difficult it will be to endure. 

Finally, are there any examples out there where people have been prescribed ipilumimab off-label for resectable Stage 3C Melanoma?  We've consulted with five doctors so far and I haven't found one willing to do it, but...

Thanks in advance!

Donna

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