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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Jewel's picture
Replies 5
Last reply 11/24/2014 - 4:18pm

Hi,

My husband just recently started Yervoy, he is getting 300mg, he is 220lbs. Is there data out there to show the difference in reponse between the two doses. It seems like your longer responders were on the 10 mg? Thanks for any and all info.

Jewel

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Replies by: Squash

I have read on closed boards lately about also many people being told they are over reacting by being worried about their skin cancer diagnosis.  After all melanoma is just a skin cancer and there have been so much advancement that we shouldn't really worry aabout  it.  Here is some comments I have to make about the optomisim in the latest article I have seen. 

MY OPINION - I have a couple of qualifications that I think apply to the optimism of this article. http://www.medscape.com/viewarticle/835282?src=stfb

I have a couple of qualifications that I think apply to the optimism of this article.  I do not mean to cause anyone to not have hope, it is just that articles like this present a false picture of where the overall melanoma treatment world is today..------ Please read thd complete article and my response before attacking my OPINION.

The title of the article ''We Have Cure in Our Sights'” is not exactly what the Oncologist asked.-----
“He asked : "Can we now cure an incurable disease in some of our patients with metastatic melanoma?" ----

I do not know if things were so much better in Australia than they were in the US in previous days,but.

-----------The article says that about 1/3rd of Dacarbazine (approved 1975) patients would be alive after a year of treatment with this drug.

-----------Responses seen with interleukin-2 (aldesleukin), approved in 1988. has a one-year survival rate of 46%. IL-2 was approved by the FDA for renal Cancer in 1992 and for Melanoma in 1998 and had a positive response benefit in 15-23% of Stage IV patients receiving it (a 5-8% complete response without ever having a recurrence). Most never got it because either they did not qualify for it and also most Oncolgists were not experienced with using it..

------------The statistics that were available when I went to Stage IV in Feb 2007 said that with treatment that there was about a 75% chance I would not see a year of survival.

------------Article says “The data on ipilimumab out to five years show that about 20% of patients become long-term survivors, “ Again to the uninformed this appears to say that 20% of melanoma patients are long term stage IV survivors. It does not point out that these statistics really only apply to 20% of the 25% of people that may respond to the Yervoy (Ipilimumab) in the first place. This actually is 5 out of a 100 stage IV patients.

------------The data ”nivolumab (Opdivo, Bristol-Myers Squibb), which has reported one-year survival rates of 73%, and for another combination of a BRAF inhibitor with a MEK inhibitor, vemurafenib with cobimetinib, with a one-year survival rate of 83%.
------------ The positive response (not long term nor cure rate) to Opdivo is around 50%. so while 73% of 50% is 36.5% for a one year survival, this is good, but still a long ways from a general melanoma cure. The same for the 83% of 50% for the one year survival of the BRAF/MEK combo.

Yes, we should have hope with the Improvement in these numbers from where I started, but “CURE??” for overall “melanoma"? ------------ MUCH more work to be done.
-------------------------------------------------------------------------------------------------Why shouldn't even our family and friends that read such articles think we are over-reacting to our diagnosis?-----------------

 

I'm me, not a statistic. Praying to not be one for years yet.

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I have read on closed boards lately about also many people being told they are over reacting by being worried about their skin cancer diagnosis.  After all melanoma is just a skin cancer and there have been so much advancement that we shouldn't really worry aabout  it.  Here is some comments I have to make about the optomisim in the latest article I have seen. 

MY OPINION - I have a couple of qualifications that I think apply to the optimism of this article. http://www.medscape.com/viewarticle/835282?src=stfb

I have a couple of qualifications that I think apply to the optimism of this article.  I do not mean to cause anyone to not have hope, it is just that articles like this present a false picture of where the overall melanoma treatment world is today..------ Please read thd complete article and my response before attacking my OPINION.

The title of the article ''We Have Cure in Our Sights'” is not exactly what the Oncologist asked.-----
“He asked : "Can we now cure an incurable disease in some of our patients with metastatic melanoma?" ----

I do not know if things were so much better in Australia than they were in the US in previous days,but.

-----------The article says that about 1/3rd of Dacarbazine (approved 1975) patients would be alive after a year of treatment with this drug.

-----------Responses seen with interleukin-2 (aldesleukin), approved in 1988. has a one-year survival rate of 46%. IL-2 was approved by the FDA for renal Cancer in 1992 and for Melanoma in 1998 and had a positive response benefit in 15-23% of Stage IV patients receiving it (a 5-8% complete response without ever having a recurrence). Most never got it because either they did not qualify for it and also most Oncolgists were not experienced with using it..

------------The statistics that were available when I went to Stage IV in Feb 2007 said that with treatment that there was about a 75% chance I would not see a year of survival.

------------Article says “The data on ipilimumab out to five years show that about 20% of patients become long-term survivors, “ Again to the uninformed this appears to say that 20% of melanoma patients are long term stage IV survivors. It does not point out that these statistics really only apply to 20% of the 25% of people that may respond to the Yervoy (Ipilimumab) in the first place. This actually is 5 out of a 100 stage IV patients.

------------The data ”nivolumab (Opdivo, Bristol-Myers Squibb), which has reported one-year survival rates of 73%, and for another combination of a BRAF inhibitor with a MEK inhibitor, vemurafenib with cobimetinib, with a one-year survival rate of 83%.
------------ The positive response (not long term nor cure rate) to Opdivo is around 50%. so while 73% of 50% is 36.5% for a one year survival, this is good, but still a long ways from a general melanoma cure. The same for the 83% of 50% for the one year survival of the BRAF/MEK combo.

Yes, we should have hope with the Improvement in these numbers from where I started, but “CURE??” for overall “melanoma"? ------------ MUCH more work to be done.
-------------------------------------------------------------------------------------------------Why shouldn't even our family and friends that read such articles think we are over-reacting to our diagnosis?-----------------

 

I'm me, not a statistic. Praying to not be one for years yet.

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JustMeInCA's picture
Replies 18
Last reply 11/27/2014 - 7:00am

Hi, all -- still struggling with my 83-year-old dad's pain management. He was taking 15 mg Oxycodone as needed for pain because he didn't want the 12-hour Oxycontin, but that wasn't helping and he lost about 6 lbs. between his first and second infusion, I think because he didn't have much appetite due to the pain.

He started on Gabapentin (Neurontin) for the nerve pain, titrated that up from 300 mg to 600 mg only at night the past couple weeks (eventually aiming for 900 mg) and then added 20 mg Oxycontin about four days ago. He's had no issues with the Gabapentin, but the Oxycontin has had the zombie side effect -- he's barely left his recliner between his 6-hour naps! I lowered it to 10 mg today to see if it helps the side effects to move up more slowly.

At any rate, he was on the phone today with one of his childhood friends who battled another form of cancer last year. She told him to use cannabis, as that was the only thing that really helped her pain without knocking her out. (It's amusing to me that these two 80-somethings are having this conversation!) At any rate, Dad reported back to me that it's time for him to try marijuana -- I don't think he was completely serious, but it got me thinking.

We're in California, so medical marijuana is legal here, but I would have no idea where to start to find 1) a prescribing doctor (since I doubt the doctors at UCSF or his primary care doctor would prescribe it), and 2) the type and dosage. I did a search and saw that several people are using cannabis oil, so I'm just wondering if anyone (especially anyone in California) could give me some guidance. I've read that it has been shown to help with tumors, but I'm particularly interested in the anagelsic effects since Dad's having such pain.

I'll ask his oncologist about it next week, but I expect this is something we'd have to do on our own. 

Thanks!

Elaine

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Replies by: Maureen038, kylez, RJoeyB

Hi everyone, 

     It's been awhile since I've posted, but I do read MRF every day and my heart goes out to the people who have died or are struggling now. My prayers go out to everyone fighting this battle. It's so wonderful to know though that there are so many people who care and truly have wonderful knowledge on this board. Thanks Tim too for providing this format!

     First, thanks Janner for your wonderful advice on my son. His three colorless bumps were nothing. It was incredible news for us!!!!

      My husband had a PET/CT yesterday. He is on the phase one ipi/ nivo trial. He also had TIL therapy at NIH before this trial. We feel very strongly that the combination of the TIL therapy and the Ipi/nivo trail have worked together to help my husband have great results. If you look at Lion Biotechnologies they are running trials with TIL and nivolumbab and TIL with ipi. We truly feel Dr. Rosenberg's work has been groundbreaking in the melanoma world. My husband  has been stage 4 for over two years with nine lung nodules. The scan showed nothing new, but his one nodule grew again from 2.8 x 2.1 to 3.3 x 2.4. cm. The SUV max is 19.2, There are two lung nodules that are about 7 mm with no FDG uptake. There are a few very tiny nodules that have a SUV max of 3.5. It seems that some nodules have disappeared. This is all fantastic news except for the one nodule. Our concern is that Dr. Kirkwood at UPMC has discussed before that he can have the one nodule taken out, but BMS has to agree to it for him to continue on the trial. My husband was almost taken off the trial in June and I want to make sure there's no problem at our appointment  on Monday in Pittsburg. Does anyone have a scholarly article I can use in case we have to argue our case. Thanks from the bottom of my heart!!

Maureen

      

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Jewel's picture
Replies 16
Last reply 11/26/2014 - 12:36am

Hi,

My husband started Yervoy on Wed 11/19. Can you please tell me how long it took for you to experience side effects? Were they able to be contolled by medication? So far my husband feels fine. Thank you so much

Jewel

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Anonymous's picture
Replies 5
Last reply 11/26/2014 - 5:53am

When I was first diagnosed with melanoma (stage 3a) 12 years ago, when my 22 year old daughter was 10, I remember scanning this wonderful support forum for hopeful messages.  I thought it useful to remind people that many of us stop visiting this website as time goes on.  I had my second melanoma (caught early because I continue to be monitored )9 years ago.  I am not complacent as the future for all of us is unpredictable, yet it is important especially for newbies to know there are many like me out in the world. 

 

Jackie

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RJoeyB's picture
Replies 1
Last reply 11/22/2014 - 1:35am
Replies by: DZnDef

There were a few articles about this yesterday, but MSK's own blog had the most reader-friendly one, I think.  Very interesting reading.

http://www.mskcc.org/blog/new-findings-clarify-how-immunotherapy-works-and-why-some-people-it-doesn-t

Joe

 

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arthurjedi007's picture
Replies 2
Last reply 11/21/2014 - 1:02pm
Replies by: arthurjedi007, RJoeyB

I just wanted to make sure that since Keytruda is now FDA approved the EGFR requirement during the trials no longer applies. That's the thing that says if I have to be out and about in a wheelchair then I can't get it because I don't have a EGFR of 0 or 1. Although I can still walk a couple minutes.

Basically since I can walk across the room ok but to be out and about I need the wheel chair because I can't walk very far I got turned down by NIH. Which that is ok to me I think I would prefer the nivo/antilag trial instead. Fortunately I figured as much so it was just over the phone. I also figured that so I cancelled the Chicago trip.

But since Keytruda is still working pretty good for me I wanted to make sure I can get my 10th dose Tuesday even not being able to walk too good.

I checked http://www.cancer.gov/cancertopics/druginfo/pembrolizumab and it doesn't seem to say anything about it so I assume so but I dunno.

It's weird cause a month ago I was walking 2 miles a day fine. So I dunno what is going on with this leg and hip. Otherwise I'm doing normal for me. I haven't heard from the doc yet except he wanted me in NIH and to hold off on trying to fix the walking so if I don't hear from them over the phone I'll sure hear something when I'm there Tuesday.

Artie

 

 

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MelanomaAnkara's picture
Replies 13
Last reply 11/25/2014 - 1:07pm

Hi, I need positive stories on yervoy. My mom had her first injection two weeks ago and we haven't seen any side effects for now. (Without two days pain in her armpit on seventh and eightht day)

She has liver metastasis(three, 15mm the biggest) and there is a  two small masses in her armpit. (19 mm,10mm).

Did yervoy work for you? Please share how and when did it work? Thank you for your concern in advance. My good wishes and prayings are with you. 

MelAnkara

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jennifer83's picture
Replies 3
Last reply 11/21/2014 - 9:50am
Replies by: Teochasse, _Paul_, DZnDef

Hello all,

I had the WLE and SLNB yesterday.  I live in Southern California and am lucky enough to be able to have my doctors and procedures through Hoag Hosptial - incredible facilities and even more incredible doctors and nurses.  

The lymph node mapping took place in the morning.  My husband went with me, and to be honest, he hasn't really understood the impact of this entire thing.  I feel like he, without saying it, thinks it's 'JUST skin cancer..."  But he sat with me as the injected the radioactive dye and stuffed me in a tube to take the photos for the mapping.  I could finally sense his concern at that point.  I teared up in there - the reality of it all is scary.  

My surgery was later in the day.  I went to sleep, woke up, and was sent on my way.  I stayed home the following day from work (today).  The removed a lymph node in my armpit and it is very sore.  My back has twinges of pain from the incision site.  I have yet to shower and remove the original dressings.  I'm still deciding on whether or not I'm going into work tomorrow... 

Now we wait for results.  My surgeon said he hopes to have them by Monday - the waiting is the worst.  I'm optimistic that everything will come back cancer free!  Thank you all for reading and the support... 

Jennifer

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shanemcdonald99's picture
Replies 5
Last reply 11/24/2014 - 5:11pm

Hi

I went through the Yervoy routine around the same time as Ginger in August and September.

I tolerated the yervoy well, but the follow up scans were on the negative side. Sort of bad news / good news type of thing.   Which one do you want first ?

Tumors in the right lung did not grow, but 2 new ones in left lung and a previous one got larger.

Tumors on liver shrank some , but the ones on Pancreas doubled in size. The pancreas acted up for a few days and that sent very sharp stabbing pain throughout my abdomen and back. I could not eat for a week either. I just could not digest anything. That calmed down and is better now. That was some brutal pain that Dilaudid would not even touch. It scared me too.

Bone lesions in spine did not grow and are stable. ( Radiation in January for that)

New tumors showed up in upper arm and somewhere in my foot ( in the bone )

So, my oncologist applied immediately for Keytruda as he feels it was not successful. So that is sort of good because the results in trials of both Yervoy and anti pd1 were very good.

He has 6 people on the Keytruda already and they are tolerating it very well so far as far as side effects.

Of course I will check back with any results from the Keytruda or side effect issues.

peace

Shane

Ginger , hope you are still doing well !

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