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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mwcollins's picture
Replies 13
Last reply 1/20/2014 - 6:24pm

Many of you know of my husband, Kevin (kpcollins31). He posts frequently and is very actively researching this disease that has brought us all together. Well, in one weeks time he will have his PET scan to determine if the thickness in his small bowel is a met or possibly something else. I am hoping and praying with every ounce of my being that it is just a resurfacing of his diverticulitis, but the possibility remains. . . Anyhow, there is a nurse on Kevin's team that is in charge of the treatment plans, and basically the facilitator for communication. She and I had a wonderful conversation this morning. She was not sugar coating anything, but at the same time telling me that she can see Kevin being here for many years to come! Such encouragement from a medical professional! She went into details with me about Yervoy and the success that she has seen with it which had me very encouraged as well. Well, Kevin comes home and says that he did more research on Yervoy and said that the studies have shown that 46% of patients live for a whopping 1 year. His thoughts are that he wants to get into a clinical trial that can be even better than Yervoy. I can't and won't accept having my husband for just one more year. Our 4 year old will have little to no memories of his daddy, and that is just unacceptable to me. My question to all of you out there is about Yervoy. For those who have been on it, is it successful (for more than 1 year), are the side effects as bad as he thinks, is the nurse just trying to sell the drug that her hospital bought into? I am so confused! I just want this roller coaster to level out and get him healthy!

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Tim--MRF's picture
Replies 4
Last reply 1/20/2014 - 7:21pm
Replies by: Anonymous, aldakota22, JerryfromFauq

I received word earlier today that Don Morton died, after several years of fighting different cancers.  Some of you will know of Dr. Morton through his work as a pioneering melanoma surgeon and years of service is Chief of the Melanoma Program at the John Wayne Cancer Institute.  I am sure we will hear more about him in the next few days, but we have certainly lost one of the giants in the field.  Dr. Morton pushed research forward in many ways, and his efforts saved thousands of lives through the years.

Tim--MRF

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Anonymous's picture
Replies 12
Last reply 1/20/2014 - 11:03pm
Replies by: JerryfromFauq, POW, Jahendry12, Anonymous, Webbie73, ecc26, Bubbles
bodrum's picture
Replies 5
Last reply 1/21/2014 - 3:39am

Is this possible?  my birthmark turned out to be BRAF positive but the result of the SLND turned out to be BRAF negative.  The pathalogist found 6 cells in one of my lymph nodes.   Now, one of the doctors is saying that maybe those 6 cells are not melanoma... 

I'm about to get the CLND. So confused.... 

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vincenl's picture
Replies 5
Last reply 1/21/2014 - 9:38am
Replies by: Anonymous, jack6020, vincenl, Janner, JerryfromFauq

 

I have a question: about 1 1/2 year ago I had a mole on my back removed. This happend in the largest academical hospital in Amsterdam. The result whas strange: my dermatologist said they where sure that it whas not a melanoma but they could not really say what it whas.

My dermatologist recommed to remove extra margins around it, to make sure it would not grow back. I,m not sure how big those extra margins are I think between 0,5 and 1 cm

It might be important to mention that before the mole or whatever whas removed I pick alot on it and tried to scab it off myself. Not a smart move I know but this might be the reason why they could not really see what it whas.

My question is does this happen more, that they could not really say what it is? and can they exclude melanoma but no say what it whas?

 

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Anonymous's picture
Anonymous
Replies 0

I have two options while waitng to get into a clinical trial.  Interleukin 2 or Temodar.  It's important to know that I've had a brain tumor and I realize that can (but rarely) cause problems with Interleukin 2.  

There is some research out there that has shown that Interleukin 2 followed by Temodar can be very effective.

Any advice....wondering if I should suffer through Interleukin or try the more mild Temodar and hope I get good results.

Dr. Lipson, my oncologist, thinks I will get into a clinical trial at Hopkins sometime this spring.  But there are no guarantees....

Terrie

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Pink's picture
Replies 3
Last reply 1/21/2014 - 1:03pm

Getting my first Ipi infusion today at Moffitt, here is hoping there are not too many side effects

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triciad's picture
Replies 1
Last reply 1/21/2014 - 2:13pm
Replies by: Lil0909

Hello warriors,

I haven't posted in such a long time.  The website changed and I forgot my password.  Finally, I emailed and was able to get a new password...easy...it just took so long for me to get around and do it.   I have been reading and following all of your stories.  You all are an inspiration to me!

 A couple of weeks ago, I received an email from the MRF about a synposium in NY on February 8.  It's all day, but it sounds like it will be very interesting.  I signed up, and I was wondering if anyone from here is going.  It would be nice to finally meet some of you.

Let me know if you are going and continue the fight!

Tricia

 

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shanemcdonald99's picture
Replies 2
Last reply 1/21/2014 - 3:42pm

I started external beam radiation yesterday on a metastisis in my L3 in spine.

I was tired all day afterward but feel good this morning. 10 days with weekend off.

Another spot showed in PT scan ,2cm on pancreas, but they are not sure about it.

They wanted to start right away on the bone anyway.

 

Original site was on abdomen which was surgically removed in nov 2012. it was 4mm and ulcerated, but sentinel node biopsy came back clean .  In nov, after injuring a muscle at work, the radiologist noticed marrow displacement in the L3 and referred me for CT scan which verified it.

The pain is mostly in the soft tissue around the area and is like a soreness, but pinched nerve type pain also shows up a little .  That is like a stabbing sharper pain.

I have only taken dexamethazone so far and it has helped the pain alot, but it also raised my blood pressure 20 points on both ends. They cut the dose in half 4 days ago and I noticed increase in pain right away. It alos relieved gout in my foot I have had forever !!

They hope the radiation will help the pain.

I asked again about the spot on my pancreas, and they did not really answer. I dont know what to make of that. He said he is not sure if it is a lesion and said sometimes the pet shows these spots near high "sugar " areas like brain and pancreas.   I said " whats the point of the pt then ? "

 

Nothing.

 

My brother just died in october from pancreatic cancer.

Is this information helpful to post here in this forum ?  I figured some updates on the radiation might be helpful to those who will try it. 

So far just the tiredness afterward.

 

sincerely,

Shane

 

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ad2424's picture
Replies 6
Last reply 1/21/2014 - 4:24pm

Hello all

I am about to start Ipi and currently a patient at MSK. I am not happy there (long story) and have a second opinion at NYU.

It seems to me that the most important issue is how repsonsive the nursing staff is answering questions and worries 24/7.

Two questions: do you agree that is the most important issue?

If you have had experience with NYU or MSK with Ipi, or another drug that involved constant contact with the nursing team, do you have an opinion on their responsiveness?

Thanks

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Janet Lee's picture
Replies 6
Last reply 1/21/2014 - 7:50pm

Hi. My husband, Don, was diagnosed Stage IV last year at this time. Since then he has had radiation to his pelvis for excruciatingly painful but inoperable mets, cyberknife for one brain met (Feb), craniotomy to remove that met (Mar), rehabilitation to recover from effects of brain met, cyberknife again for 3 additional brain mets (May), SRS for yet 2 more brain mets (Aug), surgery to remove mass in inguinal canal ((Oct), and is now facing radiation for at least two fast-growing inoperable mets in pelvic area. He is BRAF positive, but for V600R, not E. We had to fight the insurance comapny for Zelboraf, which helped him for about 4-6 weeks (Apr). He had 4 doses of IPI (May-July), and his doctor says he is responding to the IPI.His brain has been stable since the August SRS, and adrenal met and lung nodules are shrinking or holding steady.  

But, if he is responding to IPI, is it possible that this is a "partial" response? The oncologist has been saying he is definitely responding, and yet BAM! the mass in his inguinal grew rapidly, causing much pain, and was surgically removed. Two months later, scans look good everywhere else except the pelvic area again, this time a lymph node which has doubled in size. Now, each day he is much worse, is in terrible pain, and he will start radiation next week.

My question: is there such a thing as a partial response to IPI? Should we be looking at another treatment? I'm concerned about radiating the pelvic area a second time, but what if more mets continue to develop in this area? This seems like an awful lot of activity to me in this area which is obviously not responding to the Ipi.

Should we be looking to get into an Anti-PD1 trial? Is the latest MEK-and something combo (forgot the name, sorry!) only for V600E BRAF patients?

Thanks for your thoughts and opinions!

Janet Lee

 

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mwcollins's picture
Replies 6
Last reply 1/22/2014 - 1:53am

Tomorrow is the day for Kevin. PET scan to see if the thickness of the small bowel seen on the CT is a met, or something else. I'm staying hopeful that it is nothing, yet fully ready to hear that it is back, more surgery & time for treatments. We have successfully avoided interferon, IL-2, ipi, and the such by just surgical removal, but not 100% sure we'll be able to dodge another one. I enjoy reading the positivity from all of you on how ipi isn't that bad, how so many of you are living such long productive lives even after a stage 4 diagnosis. Honestly, that is what is keeping me hopefully optimistic. If you believe in the power of prayer, please pray for Kevin tomorrow. I'm praying for him, for his doctors and also for my friends who will be watching my 3 children while we attend the appointment together. Updates to come. . .

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tschmith's picture
Replies 5
Last reply 1/22/2014 - 9:07am

I will begin Interleukin 2 treatments at UVA in early February.  Just wondering if you can give me any advice and what you have experienced.

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Cfenton's picture
Replies 2
Last reply 1/22/2014 - 9:18am
Replies by: Cfenton, Janner

I was diagnosed in late Dec. 2013 with mel in situ on my scalp. It is a lesion about 2 inches up from my hairline, right in the middle where I would part my hair in the middle if I parted my hair there.  This is the site of two previous removal/biopsies in 2006 and 2007 of an "atypical mole."  It came back within this last year just like the other times, fast and dark. It is on the scar and is technically two lesions.

Now I am waiting until Jan. 31 for a consult with the skin cancer surgeon to discuss removal (excision or Mohs?).  While I am glad to talk to him first to discuss its history, location, etc.   I am, obviously, nervous that it could be up-staged... and nervous about the procedure itself in terms of healing, etc.  I am a sporting dog and horse photographer with an upcoming busy schedule and I really wanted it OVER by now!!

My last fears involve (1) this is the third time it has come back (rare since the last time they said they had clear margins after a sizeable punch biopsy) and (2) it is on my scalp/head which has a poorer prognosis than other locations - even tho they say "in situ" is curable with removal.

Any insight?

CFenton

Melanoma in Situ

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love4life's picture
Replies 4
Last reply 1/22/2014 - 9:32am
Replies by: love4life, doro, bj63

Hi there!

It's been such a long time since I've been on here!  Reading some recent posts has been very informative and comforting.  I'm wondering if anyone here has been switched from the Vemurafinib to Dabrafenib?  I have been discussing this switch with my doctor because of toxicity.  I've been having some unpleasant side effects but nothing major, more annoying than anything.  Some gastrointestinal problems, chills and joint pain/swelling mostly.  I've been on the Vemurafinib for just about a year and it has stabilized my disease nicely shrinking mets in my brain, liver, adrenal gland and a para tracheal lymph node.  I havn't had to go for gamma knife since April which has been a very welcome break.

I am a very busy mom of 3 boys and can't help but wonder if I switched if it would make life easier.  I'm told that the Dabrafinib is usually better tolerated and has been found to be very effective for brain mets.  I definitely don't want to mess with a good thing though.  I count myself very lucky to have stable disease after 4 years with metastatic disease.  I am waiting for my scan results as we speak and will see my doctor again Feb. 5.  I have entertained the idea of IL2 or TIL but we are waiting for the right time since things have stabilized. 

Any input is much appreciated!  I know so many of you have so much insight and experience with melanoma.  Thanks!

Natalie

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