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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Marilynn Eiken's picture
Replies 6
Last reply 9/24/2012 - 9:27pm

My husband is on his second 2 week dosing of Leukine.  The first round went well til about day 5.  Everything I read warned that injection site reactions were very common.  Which is what happened.  On day 5 his belly started swelling, welting, etc.  He suffered threw it til the end of the 2 weeks but when we started the injections this time the reaction was immediate.  The welts are the size of my hand, including my fingers, and mind you I am not a dainty handed girl.  Is this what most have experienced with Leukine?  I am a nurse and keep reminding him that his side effects could be so much worse compared to many treatments but after 14 days of injections Im not sure if he will have an unwelted area left on him.  We are using hydrocortisone, ice, heat, ibuprofen, caladryl.  Any other tips/tricks anyone could suggest? 

 

Thanks a bunch!

 

Marilynn

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My husband is on his second 2 week dosing of Leukine.  The first round went well til about day 5.  Everything I read warned that injection site reactions were very common.  Which is what happened.  On day 5 his belly started swelling, welting, etc.  He suffered threw it til the end of the 2 weeks but when we started the injections this time the reaction was immediate.  The welts are the size of my hand, including my fingers, and mind you I am not a dainty handed girl.  Is this what most have experienced with Leukine?  I am a nurse and keep reminding him that his side effects could be so much worse compared to many treatments but after 14 days of injections Im not sure if he will have an unwelted area left on him.  We are using hydrocortisone, ice, heat, ibuprofen, caladryl.  Any other tips/tricks anyone could suggest? 

 

Thanks a bunch!

 

Marilynn

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Rinn2012's picture
Replies 4
Last reply 9/24/2012 - 10:42am
Replies by: mel123, Linny, Rinn2012, Anonymous

Hello

I just found out recently I was diagnosed with stage 1 melanoma.

They said they will probably do a wide margin biopsy, and possible lymph node biopsy.

Can anyone tell me the details on the lymph node biopsy?

I am a little nervous and scared about this whole diagnosis ect.  It was a huge shock.

I see the surgeon on Monday to discuss the treatment ect.  But was curious about the lymph node in case I have to do that.

thanks in advance

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sjl's picture
Replies 4
Last reply 9/23/2012 - 12:50pm
Replies by: NYKaren, Gene_S, Tim--MRF, Linny

Well, here I am again with more questions.  My husband is currently stage 3c mucosal melanoma and is responding exceptionally well to carbo/taxil.  Plus he feels good.  The doctor intially said it would have no durable response but after the first treatment they think there's a chance that it might just work for him.  Some of you have pointed out to me that all too often the response is only temporary.  So, what might plan B be?  He's been told that he can't have IL2, is BRAF and CKit negative, and can't do clinical trials because of a seconday primary lung cancer.  Yervoy was the one they were going to try but because his tumors were so extremely aggressive they went with the chemo to get things under control and then move on to something else.  I just checked our insurance company's formulary and Yervoy is not covered.  There is absolutely NO WAY that we can pay for it.  The expenses are hard enough as it is already.  Anyone have any luck getting the insurance to pay somehow?  We have PPO Blue - Highmark Blue Cross Blue/Shield.  If Yerovy is not an option then what in the world is left for my husband?  Initally they were going to do interferon and radiation but that plan went out the window when the tumors popped up overnight and took off like wild fire.  The radiologist who is treating the lung cancer mentioned that he may, at some point, radiate the neck area where the tumors popped up.  Honestly, I don't know how all of you good people handle this.  It's been 5 months and I'm still a basket case.  Thankfully, my husband is a "go with the flow" type of guy and is handling this far better than I.  I'm scared out of my mind but I try my darndest not to let him know. 

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LesleyKS's picture
Replies 1
Last reply 9/21/2012 - 6:43pm
Replies by: Tim--MRF

Hello all,

I was diagnosed with Melanoma In Situ on my left thigh in July this year.  I would like to know the intricacies of Melanoma and have been doing a lot of my own research.  I need help understanding what exactly my pathology report means.  Here is what it said:

Concern over the possibility of continuous junctional colonization by melanocytes over a significant expanse (image 2) fueled by observation of a fe high level pagetoid melanocytes, recommended acquiring the block for a well controlled MART-1 immunohistochemical reaction to be prepared here at WDS/CCPL, together with deeper sections.

The haphazard scatter of pathologic melanocytes along the junction with zones of continuity is accompanied by prominent high level pagetoid melanocytes, forcing a malignant interpretation.

That last sentence is the one I am not fully understanding.  I appreciate any help anyone can give.

 

Thank you!

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Tina D's picture
Replies 7
Last reply 10/2/2012 - 11:38am

I have been on Z since May, had a couple weeks off due to severe rash, restarted on 3 pills twice daily & had scans showing NED beginning of July. A couple weeks ago, I started getting increasingly ill and we assumed it was from the Z side effects. But I was running increased temp, chills, increased nausea/vomiting and just feeling BAD. Was taken off for  a week to see if that would help and during that time had extreme epigastric pain,etc. Found a large gallstone completely blocking gallbladder. Had surgery 10 days ago to have it removed ( and they also found my intestines adhered to my liver from previous scar tissue). I was supposed to restart the Z a week post-op, but was still no where near recovered & restarting the side effects was rather intimidating! Yesterday my oncologist said to take 2 more weeks off. So.... I am really looking foward to having this time to get back on my feet. In fact, tonight we are going out to celebrate our 2nd eldest daughter's passing her LPN boards this past week! It is nice to be starting to feel a little better.

Anyone else had to take this long of a break from Zelboraf? how were the side effects when you restarted ? 

Tina

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Wendi Lynn's picture
Replies 2
Last reply 9/22/2012 - 9:46am
Replies by: Linny, swissfarm7

Hi All!
I am Stage 3b, and had a PET on 8/31 that came back with a spot on the uterus that they wanted to check. Went in for ultrasound on Tuesday and results were ovarian cyst. Normally I would take that for what it is, but my mom died from ovarian cancer. My oncologist said to wait it out another 3 months and do the ultrasound again. Am I wrong in wanting to have this checked now? I called the oncologist office and said that I'd like to have a CA125 blood test and they said it wasn't a good idea. At this point I'm thinking about calling my primary doctor and getting a second opinion. I guess I'm looking for a sanity check. Am I overreacting?

I appreciate your thoughts on this. It's hard to be objective and sane when you're scared and angry.

Wishing all the warriors well!
Wendi

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Hi all!

I don't come here much anymore, but wanted to post this.  I adored John Ingle, and I'm so sad he has passed away, especially from melanoma. 

RIP "Mr. Q"!!

 

http://www.pasadenastarnews.com/news/ci_21597065/altadenas-john-ingle-longtime-general-hospital-star-dies

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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Tim--MRF's picture
Replies 6
Last reply 9/23/2012 - 8:41pm

 

Two pieces of breaking information today that you may hear about.  Neither are about new treatments, unfortunatelty, but both are very exciting for their potential to make a difference.

 

First, Congressman Bilbray, and Congresswomen Maloney and DeLaura are submitting legislation today that, if passed, will provide extended patent protection for investigational drugs that are tested in combination.  This will provide a major financial incentive for industry to do the kinds of studies they now find difficult but which offer the best hope for melanoma patients.  

This legislation came out of meetings MRF had with Congressman Bilbray, whose daughter has Stage III melanoma.  We proposed the idea to the Congressman and provided a background document showing how similar action in pediatrics and some infectious diseases has resulted in tremendous progress in drug development.

Most doctors agree that real advances in effective treatments will only come through combining two or more drugs together.  If these drugs are already approved, doing studies like this are relatively easy.  If they are not yet approved--still in clinical trials--they are very difficult.  Companies worry that any side effects that arise from a combination study will "taint" the data of their drug and hurt its chances of approval.  And they are reluctant to collaborate with other companies on these studies.  This legislation will add a "carrot" to the mix and will help accelerate these important studies.

 

Second, the new lead of MD Anderson decided to embrace a select group of cancers around which they will build major comprehensive programs.  The idea is to find ways MDA can have a major impact on these cancers, from prevention to cures.  They call the concept a “moon-shot”, hearkening back to the day that President Kennedy made a commitment that the USA would put a man on the moon.  

Everyone at MDA has worked to put forward a proposal that their particular cancer will be part of this initiative.  Those cancers chosen will receive significant new funding for research and outreach.  In that process, MRF has worked closely with key melanoma people at MDA to discuss both what a melanoma program could look like and how we can collaborate to make such a program successful.  Today MDA announced that melanoma will be one of the cancers chosen for this major investment of resources.

 

Neither of these announcements are new treatments or cures, but both developments have the potential to have a major impact in the fight against melanoma.  All in all, a very good day.

 

Tim--MRF

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swissfarm7's picture
Replies 18
Last reply 9/30/2012 - 9:22pm
Replies by: _Paul_, Mickey n Jo, swissfarm7, Anonymous, Tim--MRF, mel123, POW, audgator

Hi, all!  Two months into my husband's journey with melanoma, I could use some contact with others on the same path.  This past summer was quite the roller coaster.  In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland.  No sooner did we return home than Hans received a cancer diagnosis.  From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! ;-) 

Hans had a wide local excision and sentinel lymph node biopsy in late July.  Melanoma was present in one of two nodes, and the following month he had a lymph node dissection.  He recovered well and none of the nodes showed further evidence of melanoma.  Hans isn't a details kinda guy while I'm a Type A researcher, preparing to write a doctoral thesis (or so it seems!) on a subject I never wanted to know about.  He took the results to mean he'd "beat" cancer.  If only!  Talking with the medical oncologist the other day brought him face to face with the reality that he's Stage IIIB (T4bN1aM0 to be specific). 

So.  Now what?  The question anyone in this situation faces.  Hans of course has to follow a surveillance regimen, with regular dermatological visits and CT scans.  This is where my first question comes in.  I've read in several places that Stage III patients should have scans every 3-4 months for the first couple of years after diagnosis.  Our oncologist suggests every 6 months, staggered with the dermatology appointments, due to the exposure from frequent scans.  (Our surgical oncologist also mentioned that they're doing scans less often now.)  What's your thought on this, and what sort of management plan have you followed?

The oncologist addressed adjuvant therapies, and naturally interferon was mentioned.  He presented the pros and cons and stressed that there's no right or wrong choice.  We're aware that the potential benefits aren't quantifiable, and that the treatment, while tolerated differently by different people, can have a profound effect on one's lifestyle.  We're really outdoor-oriented, athletic people; more significantly, we own and operate an organic dairy farm.  Needless to say, a year of suppressed activity would be challenging for Hans ~ and the rest of us.  His kneejerk reaction was, "No way!".  And I totally get that.  But as a guy in the prime of life (he's 45) with five children, the youngest of whom is 7 years old, something that potentially delays the progression of an aggressive, insidious disease may be better than nothing, kwim?  So, much as I worry, reading about the toxicity of interferon; much as I hate the thought of how it may affect him (and us); and much as I hate that we'll never know if it did any good anyway ~ I'm leaning toward it.  As for Hans, I think he just plain doesn't know what to do.  Really, how on earth does one make this decision?!

There is a clinical trial comparing interferon to ipi that Hans may be eligible for ~ although he wouldn't know going in, of course, which drug he'd receive.  While some aspects of the trial would be free, others would not, and our insurance won't cover research trials.  As it is, our insurer has actually denied coverage for all the treatment Hans has received thus far.  A long and ridiculous story, but suffice it to say I'm in an ongoing effort to appeal their decision.   Only mentioning it in the context of the trial and our need to consider financial aspects. 

Good grief, this become quite the novel.  Thanks to those who have read this far, and to anyone who can offer words of encouragement or advice.  I'm so weary of hearing well-meaning but uninformed people exclaim, "At least it's only skin cancer!".  Sigh.

Cheers,

Colleen

Keep on keeping on.

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swissfarm7's picture
Replies 5
Last reply 9/22/2012 - 9:22am
Replies by: Nicky, swissfarm7, washoegal

Hi, all!  Two months into my husband's journey with melanoma, I could use some contact with others on the same path.  This past summer was quite the roller coaster.  In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland.  No sooner did we return home than Hans received a cancer diagnosis.  From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! ;-) 

Hans had a wide local excision and sentinel lymph node biopsy in late July.  Melanoma was present in one of two nodes, and the following month he had a lymph node dissection.  He recovered well and none of the nodes showed further evidence of melanoma.  Hans isn't a details kinda guy while I'm a Type A researcher, preparing to write a doctoral thesis (or so it seems!) on a subject I never wanted to know about.  He took the results to mean he'd "beat" cancer.  If only!  Talking with the medical oncologist the other day brought him face to face with the reality that he's Stage IIIB (T4bN1aM0 to be specific). 

So.  Now what?  The question anyone in this situation faces.  Hans of course has to follow a surveillance regimen, with regular dermatological visits and CT scans.  This is where my first question comes in.  I've read in several places that Stage III patients should have scans every 3-4 months for the first couple of years after diagnosis.  Our oncologist suggests every 6 months, staggered with the dermatology appointments, due to the exposure from frequent scans.  (Our surgical oncologist also mentioned that they're doing scans less often now.)  What's your thought on this, and what sort of management plan have you followed?

The oncologist addressed adjuvant therapies, and naturally interferon was mentioned.  He presented the pros and cons and stressed that there's no right or wrong choice.  We're aware that the potential benefits aren't quantifiable, and that the treatment, while tolerated differently by different people, can have a profound effect on one's lifestyle.  We're really outdoor-oriented, athletic people; more significantly, we own and operate an organic dairy farm.  Needless to say, a year of suppressed activity would be challenging for Hans ~ and the rest of us.  His kneejerk reaction was, "No way!".  And I totally get that.  But as a guy in the prime of life (he's 45) with five children, the youngest of whom is 7 years old, something that potentially delays the progression of an aggressive, insidious disease may be better than nothing, kwim?  So, much as I worry, reading about the toxicity of interferon; much as I hate the thought of how it may affect him (and us); and much as I hate that we'll never know if it did any good anyway ~ I'm leaning toward it.  As for Hans, I think he just plain doesn't know what to do.  Really, how on earth does one make this decision?!

There is a clinical trial comparing interferon to ipi that Hans may be eligible for ~ although he wouldn't know going in, of course, which drug he'd receive.  While some aspects of the trial would be free, others would not, and our insurance won't cover research trials.  As it is, our insurer has actually denied coverage for all the treatment Hans has received thus far.  A long and ridiculous story, but suffice it to say I'm in an ongoing effort to appeal their decision.   Only mentioning it in the context of the trial and our need to consider financial aspects. 

Good grief, this become quite the novel.  Thanks to those who have read this far, and to anyone who can offer words of encouragement or advice.  I'm so weary of hearing well-meaning but uninformed people exclaim, "At least it's only skin cancer!".  Sigh.

Cheers,

Colleen

Keep on keeping on.

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LynnLuc's picture
Replies 3
Last reply 9/22/2012 - 10:57am
Replies by: Anonymous, Laurie from maine, awillett1991

My friend has been doing outstanding on the BMS Anti PD 1 trial since March 2011. Everything has completely shrunk to near nothing or vanished completely. She had one area that has had stubborn melanoma...it is a spot by her stomach in the fat lining...it is wrapped around the main artery so they can not do surgery. Through the course of this trial it has not shrunk or grown....until now. She had her scan results today. The melanoma has grown by 20% and a new met was found in her spleen.

She was taken off the trial and now referred for Ipi.

I have been in the trial since fall 2010 and have been NED for 2  1/2 years.

Just wanted to let you all know Anti PD 1 has its flaws....I am kind of upset about this. I hate for my friend to go thru IPI and the side effects. She had previous surgery and had  1/2 of large intestines and all of ascending is gone and 1/2 of transverse...that is 3/4 of large intestines removed. I don't know how she is going to handle the colitis or the skin rashes...ugh.-  Lynn
 

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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POW's picture
Replies 7
Last reply 9/22/2012 - 11:49am
Replies by: POW, Rocco, deardad, lhaley, jmmm

I have read a number of comments on this forum talking about how awful it is to be on steroids and how anxious people are to finally get off them.  It's scary to see so many strong, determined people who go through chemo with nary a wimper say how difficult it is to be on steriods. What's the deal with steroids, especially dexamethazone? What do they do to people?

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NYKaren's picture
Replies 16
Last reply 9/23/2012 - 10:40pm
Replies by: MeNDave, NYKaren, shellebrownies, LynnLuc, sjl, sharmon, Anonymous

Hi everyone.

I recently completed 6 weeks of Temodar and am going for PET scan tomorrow.  From the looks of things, I've had a partial response (so what's new?)

I realize that chemo is usually a temporary measure, and we're looking for stabilization until I can get into an anti PD-1 trial.  You never know, though.  since I've partially responded then advanced on Ipi, IL-2 and radiation, who knows what might happen on chemo.

Dr. Wolchok has said that we'd talk about adding other chemo drug(s) or switching regimins, so i'd l'm looking for any positive experience with Temodar and other chemo drug combos or other combos that have worked, even temporarily for people.

Thanks!

karen

Don't Stop Believing

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Richard_K's picture
Replies 5
Last reply 9/21/2012 - 11:36am

I had good scans last week but due to a high bilirubin count, I was taken off Zelboraf for a week.  New blood test yesterday, bilirubin is where it should be, and I was given another supply of Zelboraf; starting my 31st month on it.

Dick

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