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.

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DZnDef's picture
Replies 4
Last reply 6/1/2015 - 1:38pm
Replies by: Anonymous, Bubbles

This looks promising.  Especially the test to see who would most likely benefit before starting treatment.

 

 

http://www.sciencedaily.com/releases/2015/05/150531100051.htm

Maggie - Stave IV (lung mets unknown primary) since July 2012

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Cancer drugs rankings suggest many are of little benefit to patients

The Guardian 

Sarah Boseley Health editor

1 June 2015

© Copyright 2015. The Guardian. All rights reserved.

Leading experts call on pharmaceutical industry to focus on coming up with meaningful drugs and boost levels of effectiveness

Many modern cancer drugs are of very little benefit to patients, according to a group of leading European experts, who have devised a way to score them.

More and more medicines have been going on to the market with lower and lower levels of benefit

Prof Richard Sullivan

Among the drugs that do badly in a table published on Saturday revealing their efficacy is Erlotinib for pancreatic cancer, which offers just 15 extra days of life.

The experts are all members of the European Society for Medical Oncology (Esmo). They presented their scoring system, which has nothing to do with cost, at a meeting in Chicago of the equivalent US body, the American Society of Clinical Oncology (Asco). The document, which includes scores for more than 70 cancer drugs, has been published in the Annals of Oncology journal.

Prof Richard Sullivan from Kings College London, a group member, said they wanted pharmaceutical companies and those who fund drug discovery to focus on inventing meaningful drugs that help patients, rather than just making profits.

He said: “Over the past decade, more and more medicines have been going on to the market with lower and lower levels of benefit.”

Not many medicines are being brought forward as potential cures, most are for palliative care. To get a licence, the manufacturer only has to show that the drug has some effect. Sullivan said: “It is easier to get a marketing authorisation in palliative disease.”

The E smo magnitude of clinical benefit scale scores drugs according to the results of the clinical trials they have been through, from one – providing the least benefit to patients – to five. Drugs that score between one and three are not doing well, Sullivan said.

He said: “Where they don’t score above three, you have to ask are they really delivering clinical benefit. There will be a lot of people saying there are some drugs that get into four that shouldn’t be there.” Because the trials are run in ideal, carefully monitored populations, the benefit in the real world is likely to be lower.

Most of the drugs in lung cancer score four, but Erlotinib, also used in this form of the disease, again scores one. Out of 14 drugs for bowel cancer, three score four but the rest all score less. For advanced breast cancer, Lapatinib scores five, but there are four drugs that score three or less, including Eribulin, which the National Institute for Health and Care Excellence (Nice) turned down but is paid for by the Cancer Drugs Fund. In melanoma (skin cancer), eight out of nine drugs score four.

It is a challenge to everybody involved in drug research, Sullivan said. “Are we really designing the trial that needs to be designed to prove clinical benefit or are we just trying to get [the drug] into the market? Is it genuinely for patients or to sell medicines?”

He and his colleagues hope the drug regulatory bodies will think about their decisions to approve the low benefit drugs. They also want the best drugs to get an approval rating that means they will be high priority for use in all countries.

Rolf Stahel, the Esmo president, said: “As the international organisation committed to the interest of the oncology community at large, we are concerned about some anti-cancer medicines approved by the European medicines agency not being available or affordable to patients when prescribed.

“We aim to signal the drugs with a large magnitude of clinical benefit which should be endorsed across Europe for rapid patient access, especially when these medicines are recommended through evidence-based standards set forth in the internationally recognised Esmo clinical practice guidelines.”

* This article was amended on 1 June 2015. It originally stated that in melanoma, eight out of nine drugs score eight on the Esmo magnitude of clinical benefit scale. In fact, those eight drugs score four out of five. This has been corrected.

Guardian Newspapers Limited

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Brian_D's picture
Replies 14
Last reply 6/1/2015 - 8:48am

I was originally diagnosed with stage III melanoma in March 2011.  Had a recurrence this past Setpember with a large brain MET.  I had a craniotomy and treated with Yervoy.  About a month ago we found mets in brain and lungs.  Started on Keytruda and had gamma knife radiation last week.

I am a young attorney and it is a stressfull job.  Although I am not experiencing any debilitating side effects at this time, it is taking an emotional toll on me.  I am having trouble concentrating and the stress can be overwhelming.  I want to get a sense of what is typical in this situation.  Should I plow ahead and do my best to work through this?  Should I consider taking some time off to concentrate on getting my mind and body right?  I would love to hear everyone's thoughts and personal experiences.

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/1/2015 - 2:15am
Replies by: MattF, ncdaniel, Patina

My father started Yervoy 2 wks ago and has really gone downhill fast.  His left mouth has been droopy the past few days and he refuses to call the oncologist in fear of being hospitalized.  He's due for his 2nd infusion this Thursday but seeing how weak he is, and how awful he feels, I'm wondering if they may cease treatment.  I'm assuming it's his brain mets causing the droop.   Any advice would be much appreciated.  Thank you all.

 

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blden2186's picture
Replies 1
Last reply 5/31/2015 - 10:35pm
Replies by: Bubbles

Well ithas been over a year sine I was on this site.  I have been stage 3C for 3 years but have been melanoma free for almost two.  Now I have another tumor on my leg - the 4th round.  I may be getting intothe Tvec trial.  Meeting with oncologist Thursday.  This is getting old. 

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Bubbles's picture
Replies 1
Last reply 5/31/2015 - 10:15pm
Replies by: Bubbles

I hate that anyone may have the need.  But, if you should...these trials may be worth looking into.  Both are reported to still be recruiting.  Call the trial coordinator if you are interested!!!

Ipi plus Nivo followed by ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-trial-for-melanoma-brain.html

Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

Wishing you well.  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Mhardes's picture
Replies 6
Last reply 5/31/2015 - 12:35pm
Replies by: Mhardes, Janner

I was reading some old post and I read that you had a support group for stage 1?..just wondering if that was true. I just recently had my we 1cm (last Friday) and it was on my calf so they ended up doing a graph. I am healing and next Thursday I see whether the graph took and get my stitches out. I read that the first year is tough and I guess I have so many mixed emotions. I am so glad they got it at stage 1..and it was part of my normal checkup as I have had a couple basil cell..prior to this. I guess you just get so scared because after you get diagnosed you notice so many different things on your body and you thought you were already doing a good job. I have a small mole like purple that my dermatologist has seen several times it has never checked size or color and when he found the other (during that examination) he told me I could keep it ..like he always does...he told me the last time I could keep the one he diagnosed melanoma this time...as he noticed a change from last time. I had not paid much attention as he had said it was fine ( I have done much more reading since being diagnosed) I guess I write this as I wait for next Thursday....you just hope he didnt miss anything the last time..and I do feel good about being looked after closely now..and also have gotten a mole mapping app on my iPad..so I can take pictures..you go through a lot of emotions and I just wanted to make sure my thoughts were correct. I have read over and over that when you are in the game..it is critical to make the right decisions...and I have saw your posts a few times where you said vigilant..but not paranoid...I think that line right now is blurred a little.

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tmelanio's picture
Replies 15
Last reply 5/31/2015 - 8:16am

In great health at 67 and retired in the rural community of Nalcrest, Polk County, Florida, I chose the cheapest advantage plan I could find, saving over $300 a month over my previous plan which I suspended.  I can always go back or choose a better palan during open season.

Because my plan does not authorize routine skin check-ups, my PCP picked a random blemish to be checked out by a participating dermatologist.  On February 11, 2015, his nurse found a suspicious spot elsewhere on my right forearm.  I got a call right away that it was melanoma.  Oblivious, I thought nothing of it.

On March 2, I was shocked at how much the dermatologist cut away for such a small speck, but soon afterward I got a call that the margins were too small and that I had stage 2 melanoma.

The earliest available appointment was April 21 for one of only two oncology surgeons at the Lakeland Regional Cancer Center which is approved by the Commission on Cancer.  He said he would perform a wide excision and remove 2 lymph nodes.  The earliest he could do it was May 7.

My plan requires all testing to be routed through my PCP, a round-about way apparently foreign to everybody.  I personally had to play phone tag between the Cancer Center, my PCP, and health plan to clear up repeated miscommunications and misunderstandings before my pre-op testing was approved. Labcorp and ATR waiting rooms were full and obviously low income. 

Right up to the afternoon before my scheduled May 7 surgery, I was assured that I would get an automated call informing me of what time to show up.  Just after 5 PM I received the automated call informing me to check in 2 hours before my 2:05 PM surgery.

May 7, 10:30 AM, I received a call asking why I wasn't there for a 10:00 AM procedure for which a medical team was waiting.  When I told her about the automated call she apologized - a nurse was supposed to have called me.

My girlfriend, Julie, was told that she could accompany me every step of the way.  However, she was left in a room to which I was to return.  She was forgotten for over an hour and a half until a nurse came by and asked what she was doing in there.  She was told the surgery would last 2 hours so she went to the hospital cafeteria to eat.  The surgery was over in 40 minutes and she missed speaking personally with the surgeon.

Immediately before the surgery, a kid came by with some papers to sign.  I was hooked up on the gurney wearing nothing but the gown and of course I didn't have my glasses. On retrospect I believe it was giving him permission to insert the breathing tube for the anaesthesia.  Afterward I had a miserably raw throat and was coughing up gobs of green phlgm for 3 weeks. It hurt to swallow. I read online that this is preventable and is dependent upon the skill and technique of the anaesthetist.

The follow-up was on May 18 with a nurse practitioner in lieu of the vacationing surgeon.  She balked twice before answering my question.  Julie burst into tears when she said one of my lymph nodes tested positive.  I asked what next and she replied, "Chemo". I asked how much cancer was in the positive lymph node and after looking at her clipboard, replied, "I don't know". She reiterated the surgeon's assertion that he would take out all my lymph nodes should one test positive.  She prescribed a PET scan and brain MRI.  She scheduled my next appointment with her since the surgeon was fully booked for the month.  June 2 was chosen because he would be in a nearby wing and she might be able to get him to drop by.

Again I played phone tag trying to get approval for the PET scan.  May 21, on my way to the mobile unit, I received a call informing me that it would have to be rescheduled because it had not been approved yet. From my car I made a couple of calls clearing some blatant miscommunications before she called back with an Okay.

Yahoo! The PET scan is negative.  I would have not known until long after Memorial Day had I not called and insisted. However, I learned some perhaps dated info that PET scans have trouble detecting cancer that is less than 8 cm, which seems awfully big to me. How accurate are they?

Cancer.net states that the survival rate is the same for patients who elect not to have lymph nodes removed, and that because of this, many patients choose to leave them alone to avoid probable complications for life. Immunotherapy does not increase lifespan, and even with chemo and lymph node removal, recurrence is 27%.  Are there any stats for watch and wait?

Brain MRI scans are not available in Lakeland until the middle of June, so I am having one in Plant City May 28.  If that is negative also, am I considered NED?

I have gone cold turkey and removed sugar and processed foods from my diet.  Eating as much as I want, I now consume foods which strengthen the immune system and I am losing weight.

I feel like my June 2 appointment with the nurse is doc-in- the-box assembly line care.  I know I need a melanoma specialist. I am long registered to receive care from any Veteran's Hospital in the country. Open season to change plans is at year's end.

Any insight or advice would be sweet. Thank you.

 

 

 

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AshleyS's picture
Replies 17
Last reply 5/30/2015 - 8:48pm

I met with my docs at MD Anderson today to hear about my scans from yesterday. I made it through 3 of the 4 dual infusions (Yervoy & Opdivo). I got really sick and they took me out of the trial a few weeks ago. 

 
However.....it was all super good news today! 
 
I saw my dermatologist first - no new moles, etc. Actually, some of the moles on my body shrunk/lightened. 
 
Then I saw my melanoma specialist. All of the random tumors on my body are gone. My liver lesions have shrunk dramatically - I'd say, by looking at the pictures, by 80-90%. It was amazing to see!!!!!!!!!!!!!
 
Tonight I had a Yervoy infusion. Not the combo, just the Yervoy alone. We are leaving Texas this weekend and I'll start the Opdivo back in ND in 3 weeks. (My 2 year old is excited to sleep in her 'purple room.')
 
Ever since I found a mass in my groin at 20 weeks pregnant last July, I've received bad news from all my biopsies and scans. It feels great to get positive news! We are super happy tonight. :D
 
Ashley

 

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yazziemac's picture
Replies 10
Last reply 5/30/2015 - 7:29pm

Hi

I just wanted to update you that my husband, Pete, is receiving "hospice at home" care and that there is no longer any hope for treating his cancer.  It has spread through his cerebrospinal fluid and he has tumours everywhere.  He is currently on a pain pump and has ports to receive his other medications.  We have much support from our palliative care community at home and he is currently not in pain, although he sleeps the vast majority of the day.  We did everything we could to try to combat this beast, but it just wasn't possible.  At this point, I am praying for a merciful, quick passing for him.  He is paralysed from the waist down due to spinal tumours and I am hoping that he passes before the upper spine tumours cause him more complete immobilization.  Thankfully, he is quite lucid when he is awake, so we are able to communicate with him in a meaningful way. 

Yasmin

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_Paul_'s picture
Replies 11
Last reply 5/30/2015 - 11:30am

I remember quite distinctly sitting in my new oncologist's office last year on Wednesday, September 10. I had had a second recurrence, and I was sitting in his office to discuss the results from a PET of two days earlier. My prior melanoma oncologist had accepted a position at Stanford, and I think this was the initial meeting with new one.

I had had quite a few scans up to this point, but this time it was different. All the prior ones had shown NED. But this time I had mets in lungs, liver and gall bladder. I remember asking him what my prognosis was, and he said the conventional outlook was less than a year. So in my mind I assigned a drop-dead date a year out (apologies for the bad pun). I would be lucky if I made it all the way to midnight on September 9, 2015.

The big problem of course is the uncertainty. What did less than a year mean? A couple of months? Six?

In the past, I would just take time off work to meet with my oncologist when there were scan results to listen to, then go back and finish off the day at work. That had been my plan on this day too. But after hearing the results, I called my boss, and told him I would not be coming back. Maybe ever.

My next thought was I better enjoy my life while I still feel good so I booked a trip to Hawaii and in the meantime took off on a road trip throughout the south west.

After a few weeks I still felt pretty good. I had some side effects from treatment (ipi) but nothing from the cancer. So then I sheepishly returned to work, thinking I had overreacted. But everybody there welcomed me back and the embarrassment quickly faded.

I recently started going to a cancer support group because I wanted to see how other people deal with this strange state of existence. That’s when I heard someone jokingly use the term “expiration date”. That person had outlived hers and I am beginning to think I will too.

What I found was that over a period of just a few months, my fear of the unknown (unknown being how much time is left) has gradually been replaced with this strange outlook. It still seems quite likely that any chance of living to a ripe old age has been greatly reduced, but if I make it to my expiration day, that seems like a reason to celebrate!

I don’t think I am the only one that feels this way. I suspect there are a lot of us that go through a similar process. The end result is that for now anyway, my day to day life from the outside looks unchanged. But I have been left with this heightened awareness that I better appreciate each day of what is ultimately an uncertain future for anyone alive.

I hope someone can relate to this.

Paul

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hbecker's picture
Replies 2
Last reply 5/30/2015 - 9:59am
Replies by: hbecker, BrianP

This article about a kidney cancer patient talks about melanoma research. Very hopeful.

http://www.washingtonpost.com/national/health-science/unleashing-the-imm...

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BrianP's picture
Replies 2
Last reply 5/29/2015 - 10:48pm
Replies by: BrianP, Mat

This seems really interesting.  Maybe this could be one of the first discoveries that enables more patients to respond to Anti-PD1

 

http://www.news-medical.net/news/20150512/Study-Disrupting-cancer-pathway-could-extend-benefits-of-new-immunity-boosting-drugs.aspx

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eturner82's picture
Replies 9
Last reply 5/29/2015 - 12:57pm

Hi guys

On 5-5-15 my husband had a CT scan which showed progress and new bone mets and was taken off PD-1 his doctor was rushing all paper work and scans to NIH and they have been very fast to respond.... In the mean time he's been losing feeling in his legs and can not walk up steps..... I could not get him in the house on Friday so we called his doctor at UVA, he said bring him ASAP he is being admitted.... MRI shows a bone lesion in the area of left frontal area with meningeal contact..... As if that was not bad enough he also has melanoma in the spinal nerve roots.... No spinal tap has been done but in the MRI you can see it!!..... I NEED ADVICE, PLEASE HELP (and yes i've read the older posts on here about lepto)

Thank you

Emily

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Erinmay22's picture
Replies 6
Last reply 5/29/2015 - 10:07am
Replies by: BrianP, Bubbles, vivian, Anonymous

 

Ok guys - a little bit of a long post!  I have been MIA a lot lately!  Busy work/travel schedule!  But an update!  I had my scans last week.  I have been on the Merck Keytruda trial since Jan 2013.   Prior to that I did 4 months of Zelboraf and 4 doses of Yervoy!
 
My scans continue to show nothing new or growing!  So it was decided that last week was my last Keytruda dose! (I think that made #41?)   While they can't prove I had a total complete response (I have some unchanged slightly swollen lymph nodes that they think have dead disease but are too hard to biopsy and too small to check with a PET scan.  
 
Those that know me, know I LOVE to take pictures!  I was testing out a new app and put this collage together to show how thru it all, I haven't let melanoma define me or slow me down!  Just wanted to share as a little hope and encouragement!  (Sorry for the long post...)
 

 

** what I shared on Instagram (https://instagram.com/p/242S8yxhKX/) - I always forget I downloaded the Instagram layout app!  A summary of the almost 5 year journey with melanoma!  And how it hasn't really stopped me!  Upper left hand picture is me in Australia in September 2010.  That was when the mole on my back started to grow like crazy!  It was there one night in the outback near Uluru that it started to bleed!  I had it removed immediately after returning to the states!  Other pictures are a sampling of trips since then with trips to Thailand (twice), Scotland/London for summer 2012 Olympics! Yosemite, Russia (winter 2014 Olympics) GrandCanyon Mexico!  
 
Cheers,
Erin
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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