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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Anonymous's picture
Replies 6
Last reply 11/24/2014 - 3:58pm

Someone on this list was seeing a doctor at Emory a while back but a search here did not turn up that post. 

Second question:  Can you contact someone privately thru this list?  Not chat, private email.

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churchwelldana's picture
Replies 10
Last reply 11/24/2014 - 12:19pm

 

I was recently diagnosed with stage 3 melanoma. I've had a SNB and one of the lymph nodes was positve for cancer. Now they will 
remove all the remaining lymph nodes from my groin. The nurse said the typical recovery time would be 4 weeks. Is that accurate? I'm a fourth grade school teacher and I was wondering when I might feel like returning to work.

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Jewel's picture
Replies 15
Last reply 11/24/2014 - 8:41am

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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My mother has seen her melanoma seed to the surface of her skin over the past five months. The tumors are localized to the original limb (leg), but are quite painful. The lymphoma she experiences does not help the pain she is in. She is a candidate for a procedure called a limb perfusion, which cuts off circulation to the limb and infuses it with chemotherapy drugs directly. This includes removing remaining lymph nodes. It is apparenlty a considerable operation to recover from but has the potential to cause the seeded tumors to recede for an average of 10 months. 

If anyone has experience with this procedure or caring for a loved one with seeded melanoma I would be very grateful to know. We are very concerned with how to reduce her pain. 

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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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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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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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Anonymous's picture
Anonymous
Replies 7
Last reply 11/21/2014 - 10:23pm

I'm wondering if anyone has had any experience with severe itching after IL-2 treatment. It has been almost six weeks and my dad is not getting any relief.  Nothing has helped so far (gabepentin, Benedryl, cold compresses, etc...), it's maddening. Any suggestions?

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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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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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DZnDef's picture
Replies 2
Last reply 11/21/2014 - 12:34am
Replies by: DZnDef, Anonymous

I have loads of moles. No idea how many.  For the past few months many moles on my torso along the sides changed in texture.  Instead of feeling like the rest of my skin, they became rough and dry and almost scab-like.  While lying in bed, I absently scratched at one and it came off in my hand.  No pain, no blood.  Normal skin underneath.  A few others felt similar so I checked in the bathroom to make sure they were really moles and not something else.  Yup, those were my moles.  I peeled off four more the same way before I hit one that was a tad sensitive so I left the rest alone.

I'm already Stage IV with lung mets so I'm not overly concerned about any of these being melanomas, just curious if anyone else has experienced something like this and what it might mean.  I don't see my oncologist again until January.  It's not the first time this has happened with my moles.  The first time I was a teenager (I'm 49 now).  Then it happened again about ten years ago.  And now this is the third time that I can remember.  Anyone have any insight?  Has this happened to anyone else?

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

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