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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Tim--MRF's picture
Replies 5
Last reply 8/14/2015 - 10:53am
Replies by: Tim--MRF, Ed Williams, Anonymous, Bubbles

We have been following discussions with the FDA around approving Opdivo (nivolumab) as a first-line therapy for metastatic melanoma. Currently the label require patients whose tumors have the BRAF mutation to have BRAF therapy first, then Yervoy (ipilimumab), and only take "nivo" after those approaches have stopped working or proven intolerable. Patients without the BRAF mutation must progress on ipi before taking nivo. 

The company who makes nivo, BMS, has applied to expand the approval so the drug can be given as the first treatment, instead of the second or third. The FDA said it would make a decision by September 30. They have now announced that the deadline for that decision has been pushed back by two months. What does this mean and how will it affect patients?

First, the reason for the delay is that BMS has recently submitted a large amount of new data focusing on patients with the BRAF mutation. The FDA simply needs time to review this data.

Second, based in the initial data the FDA could have approved nivo as first line therapy only for patients whose tumors do not have the BRAF mutation. With this additional data they are more likely to take action for all patients regardless of BRAF status.

Third, the oncology drug section of the FDA has done a good job recently of acting before their deadline, and sometimes well before the deadline, so we can hope this will be the case in this situation.

Fourth (and last!), many oncologist are prescribing either Opdivo or Keytruda (which has the same restrictions) as first line therapy despite what the label says. This is in keeping with other guidelines and has not generally faced any pushback from insurance companies around coverage.

The bottom line is that the delay is not a cause for alarm and may result in more patients having access to anti-PD1 therapy faster.

 

Tim--MRF

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Skywalker's picture
Replies 7
Last reply 8/31/2015 - 9:29pm
Replies by: _Paul_, Skywalker, Anonymous

The 'age spot' on the back of my nose that my dermatologist froze twice across the last few years and had me pay for the freezing since it was 'just a cosmetic issue' turns out to be melanoma in situ, after I now insisted on a biopsy, given that I already had an SCC and breast cancer. 

I need to decide whether to get a plastic surgeon or should the skin cancer derm I now found 'cover' the defect? Does it make a difference? 

What kind of staining should be used in the pathology? I read that there are numerous different versions and that some are not chosen because they are expensive. Should I insist on a certain method? 

What kind of grafts or flaps are particularly successful and look the best (I'm a girl) on the back of the nose? 

The doc says he'll ecxise with a .75mm margin; is that good? 

I'd value your input. 

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Polymath's picture
Replies 9
Last reply 8/15/2015 - 4:49pm

I don't recall this topic coming up and have always had my suspicions.  Like Artie, I had every side-effect possible in the extreme when on my first drug therapy Zelboraf.  It was a horrendous experience but my goodness, was it effective.  My tumors, several subcutaneous seemed to melt away in what was days, not weeks.  But after progressing in just three months, Taf/mek combo, then Yervoy, then Keytruda all were easy to tolerate, and (lucky me) had few if any side-effects at all.  But all these were completely ineffective (unlucky me), and now I'm in a clinical trial having exhausted all FDA approved (insurance covered) treatments.

Has anyone else noticed a correlation between side effects, and the effectiveness of treatment or is my case seem unique?

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mkirkland's picture
Replies 5
Last reply 8/14/2015 - 7:03pm

Well since my last post I have had my wide excision on my foot and my slnb which came back positive. My original breslow of 1.5 changed to 2.96 and my Clarks level went from 3 to 5. I meet with my dr again next week to discuss lymph node dissection & scans. I am also in the process of scheduled an apt at MD Anderson which is a large cancer hospital with a great melanoma team. I want to know all my options!! 

But most importantly!!!! My question or really any info anyone can provide would be grateful... I have a one year old littler girl. Could it be possible that I had this melanoma when I was pregnant?? I know cancer can be passed through the placenta. I plan to ask my dr also. Any light that can be shed would be much appreciated! 

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Keepingyourchinup's picture
Replies 6
Last reply 8/18/2015 - 7:49pm

Hi Everyone,

So I have several questions.... I know a few of you on here have told me you received the pegylated interferon treatment but stopped it for mutliple reasons or chose not to go down that road. I started the treatment in June but have decided to stop it as I really don't like what it has done to my quality of life. I am stage 3A and this is really the only treatment I qualify for. I am NED for now but am a newly diagnosed melanoma patient, since April of 2015. I have lost 20 pounds, the fatigue is terrible, and I sleep at least 16 hours a day; I won't go into the rest of the symptoms that go along with this. I decided that I would just "watch and wait" for now as I don't see the statisitcal value in this drug and I would rather have a good quality of life back then to live like I have been since June. I originallly felt like  a whimp for quitting but 5 years of feeling like this is not for me. There are pills to combat some of the side effects; I am on lexapro, zofran, ibuprofen, and they were going to prescribe an appetite stimulant before I said enough is enough. This is all very frustrating, which I am sure you can relate to.

Anyway, my question is how long was it before you started to feel like yourself again after stopping the treatment? Also, I know I have to follow up with my surgeon and oncologist for a specific plan but how often are you receiving PET scans? I had one in June and it was clear but I am not sure what the whole "watch and wait" plan is. I like to be prepared before I see my docs so I can make an educated decision in this process.

Thank you for any help that you can offer.

 

Kathy

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Anonymous's picture
Anonymous
Replies 26
Last reply 8/18/2015 - 6:50pm

Just wanted to state that some people need to be anon because of their jobs or not wanting their friends to know their diagnosis.  I know I lost many friends who avoided me because it scared them.  Also, many "real" names on here are made up fake ones anyhoo.  So Ed, etc, leave the anons alone, they have good reasons.

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SABKLYN's picture
Replies 2
Last reply 8/15/2015 - 6:43am
Replies by: Anonymous
Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2015 - 12:23am
Replies by: KMick, kylez

If you were amelanotic, what would you be looking for; skin wise for recurrence

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stars's picture
Replies 7
Last reply 8/17/2015 - 4:46pm
Replies by: DZnDef, stars, DianaD

I went to see a derm yesterday for a second opinion - to date my treatment has been through a skin cancer clinic run by GPs (three primary mels - stage 0, stage 1, stage 1). The derm was quite impressed - if that's the word - at meeting someone with three mels. He established that I didn't have familial mel (no family history), nor did I have dysplastic nevi syndrome or whatever that's called where you have hundreds of weird moles. He puts my mel down to early, harsh sun damage (I grew up baking under very harsh outback sun in Australia, in the days before sun safety). He had a good old look at my skin, but a bit too quickly for my liking - either he's that great that he can do it quickly, or he's not that great and did a half-ass job. He biopsied two moles on my back - shave biopsy, which I queried as I prefer full excision with 2mm margin. He assured me the shave would get the full lesion and 2mm margin as well, which to be frank I don't believe. Both moles were not regarded as suspicious by the skin cancer clinic GP, or my family GP who did another skin check a few weeks ago. One was a flattish brown mole with a tiny dark spot - biopsied because of the dark spot - the other was a smaller 'whirly' mole with blurred edges. I've had one of those biopsied before and it was moderately dysplastic so worth taking of. It was biopsied because of the smudgy blurred edges. So this is my third full skin check in two months - two GPs (or general practitioners) and one dermatologist.And I am again playing the waiting game, probably until Monday. He recommended six monthly checks for me (assuming the biopsies are not too concerning), which I would very much like. I would LOVE to have to think about mel only every 6 months (or perhaps 1 / month self skin-check) !

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Rocco's picture
Replies 9
Last reply 8/16/2015 - 8:31pm

-August 11, 2005 I was told I had cancer.  3 weeks later at a 2nd opinion I was told I had Stage IV.  Fast forward 10 years later and I'm NED.  Details on treatments, etc under my PATNET log.  It's been a long trip, but I'm still so very glad to be here.  Hope and good vibes to all in the fight, their care givers, families and friends.  And many, many thanks to the skill and compassion of the doctors, Physician's Assistants, nurses, and staff at Dana Farber in Boston!

Hang in there!

- Rocco, IV in 2005, IPI responder in 2008, NED since 2009

 

 

Luke 1:37

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Jubes's picture
Replies 11
Last reply 8/13/2015 - 11:06pm

Hi all

my doctor and I have decided to have a go at stopping keytruda and see what happens. I will try and do 2 more infusions despite debilitating arthralgia/myalgia for which I have been on prednisone since April and trying to wean myself down. Just now on 7.5 mg per day but can't function on less. 

I will have done one year of keytruda when I stop. Has anyone stopped keytruda and had disease progression afterwards. My lung tumour has decreased from 7.9 cm to 3 cm or less with no new mets in this year of treatment and the melanoma in my nodes has disappeared. I am assuming it will take 12 weeks or so for keytruda to wash out of my system. But just wondering when ppl stop it how long has it taken for side effects to go away?

thanks for any info

anne-Louise 

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Millykamp's picture
Replies 10
Last reply 8/14/2015 - 3:45am

About 2 weeks ago I had an shaved biopsy on a mole done on my neck. The derm had called and said we need you back in to redo the same spot. Due to what it had said  in the report its non cancerous but it's giving us some reading...  I go in tomorrow for re shaved. But this time more wider and deeper tissue is being biopsy on again...  

 

I am am confuse by the whole thing. Can someone explain it to me?   

Melissa 

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Birdlo's picture
Replies 8
Last reply 8/25/2015 - 4:25am
Replies by: Anonymous, Mamarose0403, stars, Birdlo, CHD, Bubbles, DianaD

Hello,

I'm recently diagnosed with melanoma on my ankle, 41 years old. T1a, superficial spreading, 0.58mm, Clark's level 3, no ulceration, dermal mitoses <1/mm2, no regression. 

I'm scheduled for a wide excision surgery and the surgeon also recommended sentinel lymph node biopsy, though optional. He did reassure me that the chance of finding anything in the nodes was about 5% or less, but he thought I might want to have that extra reassurance and he assured me that other than mild pain at incision site, it would be very unlikely that I would suffer side effects from the biopsy. I agreed to the biopsy with the surgery. I WOULD like to have that more certain assurance that we are in the clear.

Anyone here with thoughts on this? From all that I've read online, SLNB is NOT recommeded for lesions under (about) 0.7mm, at least those without any other features present such as ulceration, faster mitoses, etc. So is there some reason I shouldn't have the SLNB done? I'm not ooking forward to having any surgery, and certainly not anything "extra", but I'm willing to go through it if in fact it will give me more certainty of being free of future effects of this tumor. 

Any helpful comments appreciated. 

Thank you!

Louise

 

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Wow Sarah it sounds like your son needs something to work really soon. 30 to 40 brain mets and already had lots of radiation. Poor guy. I feel so sorry for him.

Keytruda might work a miracle but in my opinion he needs something really special. You already go to Chicago and that is where this trial is. It's at the University of Illinois in Chicago. The trial number is NCT02355535. One of the names for the medicine is PAC-1. It deals with melanoma and other cancers with a specific focus on the brain.

You can call the nurse Palak Soni at 312 413 1069. Her email is psoni16@uic.edu. She is very very sweet but talks a lot. Also still has a little bit of India accent but I could understand her fine. Also she can be a bit laid back and not into urgency but very gentle persuasion should get you in quick. Afterwards she was very quick in getting stuff done. Like she had the biopsy results in 2 weeks compared to the university of chicago 7 weeks.

Another nurse that I didn't meet is Alisha Williams at 3124132746. alishaw@uic.edu

The doctor is Dr Oana Danciu who might be at 3129961581. ocdanciu@uic.edu

I reallly really really hope this helps. The only reason I knew of this trial is because brian or kevin or um can't remember who posted it about 6 months or so ago. When I was there in May I didn't see the doc just nurse Palak but I decided it was too scary to be the first person on this. The trial just started in May. Hopefully it will work a miracle for your son Arthur.

Artie

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Eileensulliv's picture
Replies 13
Last reply 8/14/2015 - 6:29pm

On Thursday, I went in for a CT scan (with contrast) and my usual nivo treatment. Before getting nivo, they give me some Benadryl because I broke out in hives once while getting my nivo. When I had a CT scan a couple of months ago, I started vomiting towards the end of my nivo treatment, and was really out of it for at least a day, so they started giving me half the dose of Benadryl during my treatments, and I have been just fine during every treatment since then.

This past Thursday I had the scan and the treatment, complete with Benadryl. During the treatment I started feeling cold and tired, which is not entirely unusual. I finished the treatment and they removed the IV. I went to the bathroom and started shaking from the cold. I went to gather my things and leave, when one of the nurses stopped me because I was shaking so badly. She looked at my eyes and immediately sat me back down, saying I was having a reaction. Getting another IV in for more Benadryl was a challenge because of the shaking, but they got it in and my reaction seemed to calm down. And then I started vomiting and fever spiked. Tylenol was no help for the fever, and eventually I was admitted to Hopkins, where I stayed until Sunday.

They checked all sorts of things, as I also developed shortness of breath while in the hospital and had to be on oxygen. The shortness of breath still comes about, but does get better everyday. They treated me with prednisone, and I have started to taper the dosage. I'm hoping this won't delay my treatments as it did for me back in March. My onc and I will talk later this week about how to proceed. At this point, it's safe to say something about the CT contrast isn't sitting well with me. But is it the contrast alone or when it's with the nivo... We don't know. 

Have any of you experienced this? I'm just curious as to what my future scan options will be. My onc says he thinks we could try a CT without contrast, but that there are other options.

Im sorry to make a long post even longer, but the BEST part is the CT scan results.... GREAT NEWS!!! The tumors in my lungs and most lymph nodes are GONE! The mesenteric lymph node in my bowel is stable, no change... However, it is just barely larger than a normal lymph node, and may just stay the size it is now because it was so enlarged earlier this year. My onc seems to think if he were to look at it under a microscope, he wouldn't find any cancer. He says we will continue on the nivo and scan again in another couple of months, but that so far "everything looks great"! Even in the hospital when I was, of course, wanting clarification (in utter disbelief that the tumors in my lungs and other lymph nodes are just GONE) he said he would call this a POSSIBLE partial remission! I think he was trying to be very cautiously optimistic with me, but I just kept pressing and pressing! 

I just read the CT scan report this morning and kept looking for the second page... It was so short! Here's to good scans, short reports, and a celebration without a hospital stay! Thank you all so much, I love the support I continue to receive through this board!

Eileen 

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