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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himynameiskevin's picture
Replies 55
Last reply 10/8/2012 - 9:54pm

this is brenda writing on behalf of kevin....

first i wana say that you all have been an ispiration to kevin, and are the reason for his positive attitude and strenght.

i took him to the E.R on friday because he wasnt doing too good.he had an mri and the results showed a significance increase in the amount of tumors and the size of the previous ones he had.he went through whole brain radiation and it seems like it wasnt effective.we talked to the doctor today and she said that he has began to bleed in his brain, and unfortunately theres nothing more we can do.

as you can imagine our hearts are broken. he has been so strong and brave through this journey, but its time for him to go HOME. i truly belive he came into this world to inspire and show people how to be  caring loving compassionate human beings.

he's not in any pain, but he is on pain medication because it helps him relax and sleep. when the medication wears off he's able to speak to people fine. hopefully he'll be able to write a personal message later on.

please, please dont be sad, or sorry. i cant express how much love he has for you all. and since hes going HOME i know he will watch over each and every one of you, think of him as your personal angel because thats what he will be. 

i wish you all strenght and healing. and when your feeling down and out and it seems like theres no hope, please ask yourself what would kevin do?

and i promise you, you will get the strenght and motivation that you need.

 

love, brenda.

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this is brenda writing on behalf of kevin....

first i wana say that you all have been an ispiration to kevin, and are the reason for his positive attitude and strenght.

i took him to the E.R on friday because he wasnt doing too good.he had an mri and the results showed a significance increase in the amount of tumors and the size of the previous ones he had.he went through whole brain radiation and it seems like it wasnt effective.we talked to the doctor today and she said that he has began to bleed in his brain, and unfortunately theres nothing more we can do.

as you can imagine our hearts are broken. he has been so strong and brave through this journey, but its time for him to go HOME. i truly belive he came into this world to inspire and show people how to be  caring loving compassionate human beings.

he's not in any pain, but he is on pain medication because it helps him relax and sleep. when the medication wears off he's able to speak to people fine. hopefully he'll be able to write a personal message later on.

please, please dont be sad, or sorry. i cant express how much love he has for you all. and since hes going HOME i know he will watch over each and every one of you, think of him as your personal angel because thats what he will be. 

i wish you all strenght and healing. and when your feeling down and out and it seems like theres no hope, please ask yourself what would kevin do?

and i promise you, you will get the strenght and motivation that you need.

 

love, brenda.

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madeclaire's picture
Replies 2
Last reply 9/25/2012 - 2:39pm
Replies by: madeclaire, Lucassi

Im facing the difficult decision to begin treatment as a stage !V with mets to the liver.  My results for molecular testing will not be in for a week and I've already waited 6 weeks due to a problem with the first tissue sample sent to the lab.  I'm about to begin on yervoy since everything I've read indicates this could reinforce other drugs I may be eligible for should I have a mutation.  Anyone out there that can tell me realistically what I can expect everyday life to be on Yervoy?  I'll be receiving 4 doses over the next 12 weeks.

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Kim41's picture
Replies 4
Last reply 9/27/2012 - 10:54pm
Replies by: Kim41, Charlie S

I am not new to this site and I thank all who give such great advice on here. Diagnsosed stage 3a in November 2011. Now I have a small hard nodule I can feel in WLE scar on left thigh directly in the center of the scar. I am to have a biopsy done on Sept. 26th and the dermatologist is going to try and remove it in her office. I also had a biopsy of 2 lymph nodes in my right groin that are slightly enlarged and mildly hypervascular just 2 days ago with FNA. Hoping this is all nothing and I really think it would be soon for me to have a recurrence. My original melanoma was 1.3 which was a shave biopsy so it could have been larger. It was nodular,spitzoid type with vertical growth. I know I am jumping the gun but what would my options for treatment be if it was a recurrence?  I also just had a CT scan for some upper right and left abdomen pain and it shows 2 denisities that are about 1cm each and they think they are hemangiomas but the filling affect of the dye was not normal. Should I push to have something more done to make sure they are not melanoma?  Hopefully this will all turn out to be nothing!!           Kim

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swissfarm7's picture
Replies 29
Last reply 9/25/2012 - 6:10pm

As I mentioned in my recent, initial post, my husband and I own & operate an organic dairy farm.  He is stage 3b and may be undergoing the standard interferon treatment.  I feel like we need to be very realistic about potential side effects and prepare accordingly, perhaps hiring and training an additional employee.  (We have one employee, and my boys help out as well, but all of these guys have their own limitations, and my husband by far does the bulk of the work.)  

My husband wants nothing to do with discussing the worst case scenario.  He insists "nothing will change", a line that doesn't reassure me in the least.  Even if he tolerates the therapy like a trooper, imo things *will* change, and all of this *does* clearly affect me in a very significant way.  I can not simply move forward and act is if it'll be a walk in the park.  I need to know that our business can function properly even when he's not physically and/or mentally able to run the show.

I realize our circumstances are somewhat unique ~ not many dairy farmers around any more! ~ but I'm interested in how others prep for this sort of thing.  And, for that matter, how you handle the tension between spouses over these aspects of the disease & treatment.  I am quickly realize that being the one who's informed, and being the caregiver, might very well be as challenging as being the one with the cancer.

Thanks for any insight you can offer.

Cheers,

Colleen

Keep on keeping on.

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Rinn2012's picture
Replies 6
Last reply 10/14/2012 - 10:59am
Replies by: amandamini, Anonymous, Marilynn Eiken, Rinn2012

Hello

I am newely diagnosed.  All I know is that its stage 1 melanoma.

My question is from those of you that have seen dr's already and done treatments, how likely is the melanoma to come back or increase in stage from a stage 1? 

thanks

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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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