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
Anonymous
Replies 0

Is anyone aware of a Yeroy and MEK trial?

Or has anyone thought of combining the two drugs? can anyone offer any advice or knowlege to this,

 

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Anonymous's picture
Anonymous
Replies 0

Is anyone aware of a Yeroy and MEK trial?

Or has anyone thought of combining the two drugs? can anyone offer any advice or knowlege to this,

 

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Tim--MRF's picture
Replies 19
Last reply 9/26/2011 - 11:00pm

I received an email from a long-time, close friend of Nicole (NicOz) and she gave me permission to share the note.  I hope everyone who reads this understands how very important you are to each other, and how very meaningful your interactions are.  Here's the note:

 

Dear Tim

We have never corresponded, yet I feel I know you, through my friend known to MPIP as NicOz.  Through her journey I have often come to this board to share in some small way Nicole’s journey.

I am so very sorry to say that Nicole has died as you have no doubt read on the MPIP board.  Nicole either died during the night of Sunday 18 September or the morning of Monday 19 September.  I do not yet have those details.  As you can image her family are dealing with their grief. If you feel this email is worth sharing I am happy for you to do so. 

I wanted to write because I know how important this board and the brave generous people who shared their stories were to Nicole at times.  How it comforted her, informed her, saddened her, angered her, but always made her feel a part of a community, which we her family and friends could never really experience being on this side of the melanoma battle.

Nicole was a warm, loving, caring person, who struggled with this disease as others do.  Often, more often than not, she found it easier to deal with this journey with anger and an acerbic wit in public, masking a heartfelt grief and fear, which she could not express, even at times to herself.  Behind the scenes I know that there were many she wanted to support and did a wonderful job of it. Nicole was a tenacious little Foxie Terrier.  Her bark was always far more than her bite.  It helped keep her strong in this battle, focused and determined. At times also driven like a dog with a bone.

Many on this board, some still here, some who are resting, and some who are no longer in need, meant a great deal to Nicole.  I could name so many and yet I won’t just in case I forget a name or get one wrong.  I would like to think they know who they are. You were of course, one of them, Nicole held you in high regard. The journeys she listened to, the discussions she entered, the stoushes she once told me helped her feel alive, yet at others times hurt her because she was misunderstood.  I use to tell her stay away, don’t get so involved, and let it go, they don’t know you. 

Then for the past six months I have come to this board and engaged with many of the people here, feeling their triumphs, hurting at their setbacks.  The way that the people here offer solace and concern, they empathize and support as well as inform and rally and I understood why Nicole found it so hard to stay away, to not get involved, why she engaged. I never intruded into what I felt was Nicole’s space, although many times I was tempted, to encourage, or to empathize or to simply comment on a post not responded to.

Nicole has left a piece of herself with many of us, she is my son’s God Mother, was a best friend.  These are but a few pieces I will carry with me always, she has left many pieces of herself with me and mine.  But I think that she would have liked to leave a mark, a deep, and a little shared thought with those whose journey she has participated and shared in, the community no one wants to be a part of, but receives so much because they are.  She would deny it, she would have something ready and clever and self deriding to say, to cover her soft spot but I think it important to share that I think if she felt she could, she would say….

Be true to yourself, be kind to yourself, be kinder to others and be kindest to snappy tenacious little foxie’s fighting the battle. Good journey’s all whose path was at one time joined with mine.

 Donna

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bcl's picture
Replies 31
Last reply 10/4/2011 - 3:19pm

don't be offended folks, Nic never liked a fuss, and previously said when she passed away she wanted us to simply say she karked it. ( She wanted us to add a smiley face there, but I just can't.)

Sadly today, after years of defying the odds, our feisty beautiful and brilliant friend passed away.  As she was setting off home from the hospital last week, her final instructions to us on her blog were  Hooray!! Behave, if you can :) 

RIP Nic love -  I will never forget you, and will forever be grateful to you for being my friend.    linda

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Replies by: mombase, momof2kids, Lisa13, JerryfromFauq, Anonymous, ohwell, Swanee

Hi everyone, this is my 1st time posting, just joined TODAY!

I'm from Pittsburgh, PA, thankfully home of the Hillman Cancer Center & UPMC Presby, where I've got all my surgeries, etc done already.

Back in May 2011, I had horrible headaches, and my vision was getting blurry, for almost a month I dealt with it (thinking it was my birth control doing it, so I got off that), and it didn't stop. So, June 21st 2011, I went for a head scan, and they found 2 SPOTS on my brain.

June 21, 2011, I was in the hospital and and June 22, I had brain surgery to remove the GIANT ORANGE size spot above my LEFT EYE (which caused the blurry vision), and they left the small spot on the other side of my brain in (size of a quarter).

I was out of the hospital after a few days and the eye doctor called and said that my vision tests showed hugely abnormal distress, and said I needed to come back in and after a few more tests, they sent me to the hospital, to either get eye surgery or a Lumbar drain (which is what I got for 8 days over July 4th), as all the fluid was still up around my brain causing stress on the eyes.

So for 2 months, for all of July & August, I had to keep checking with the eye doctor , and luckily my vision is almost back to normal as of Sept 2011 and in July I had the Gamma Knife treatment (which I just lost my hair in both spots they treated, and for almost 2 months it hasn't grown back!)

Then my chest xray showed I had 2 spots in my right lung (1.3cm & 3.9cm) and 1 spot in my liver (4.6cm), which for 2 months went untreated while my eyes and head were recovering.

FINALLY Sept 2nd, I started 1st injection of YERVOY / IPI . No side effects yet except for some very dry skin on my head. I go for my 2nd round Sept 23rd at Hillman Center in Pittsburgh. This is my 1st treatment for my chest spots, and all I can say is I HOPE THIS WORKS to shrink these down.

I will go thru whatever I need to to stay alive for as long as I can. I've had a very difficult time with this emotionally, I break down almost everyday crying thinking about the future, just having a hard time dealing with all this, most my friends must think skin cancer is a skin only thing and it's NOT, hell even I had no idea before I got this, I had moles removed this winter, where is where they think this may have came from.

I'm 31 years old and have 2 kids, who are 6 & 2, and I want to stay on this beautiful earth for as long as I can to be with my kids!

I'm just so nervous about whether this works or not, I am not looking forward to IL-2, if I have to go to that, I'm BRAF negative.

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cwu's picture
Replies 9
Last reply 9/21/2011 - 1:16am
Replies by: JerryfromFauq, Anonymous, FormerCaregiver, cwu, Lisa13

Hi,

My father is 83 years old and was diagnosed with Stage III melanoma which originated in the sole of his foot.  He had surgery a year ago and his cancer came back in the form of lesions on his calf this year.  There are hundreds of them and scans showed that it hasn't metastasize to his organs. He tried a targeted chemo drug, Dasatanib, but it didnt work after two months. He has a c-kit mutation.

We now have two options, Yervoy or DTIC/Temodar.  His oncologist recommends Yervoy however the side effects seems so scary.  I have been learning everything I could about Yervoy but dont know as much about DTIC/Temodar. Yervoy seems to offer the hope of prolonging life longer but I also saw somewhere that it works on only about 15%.  Does any know the statistics for DTIC/Temodar (I am an accountant so my instinct is to look at the numbers first :-) ). 

If you have tried both DTIC and Yervoy, please let me know how they compared and what worked for you. Also, does it make a difference which treatment you should try first?  Thank you.

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Anonymous's picture
Replies 9
Last reply 9/2/2013 - 11:07pm

Hi Everyone,

I have stage IV Melanoma, and while I have a few tumors at the moment, I am fortunately living a fairly normal life.  I know that can change anytime, but I am insistent on taking things one day at a time. 

So in just a few days, I am scheduled to have my first Yervoy infusion (sounds like I'm a vodka).  I've glanced over the massive list of POSSIBLE side effects, but don't really have any good information about WHAT I should be prepared for and WHEN side effects might happen if they do.  Also, what should I be asking my doctor before starting this treatment? 

From reading people's comments, all I have gathered so far is that I should get a prescription for diarrhea and have it standing by... and if I have bad headaches, make sure to tell the doctor immediately because it might be a pituitary gland thing.  That's really all I've got... which doesn't feel like much.

So I thought I would ask you!  If you or a loved one is having or has had Yervoy treatments... what advice would you give someone who's just about to start their first treatment?

Thanks for taking the time to respond!

-Mark in Dallas

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Aloha everyone.

My name is Bob, and I was diagnosed with MM back in March of this year. Had a wide excision on the neck to remove what I have been told was a stage I. Another one popped up on upper left arm a couple weeks ago, and I will have to have it re-biopsied in a few weeks. Only reason for the delay is my derm. is out of town for a few weeks. I live on the big island of Hawaii, and have to fly to Oahu for treatments, and examinations. I have hundreds of the a- typical moles on me, and hardly a day passes now without changes appearing. You will  have to forgive my lack of proper terminology on much of what is going on, but I am learning as fast as I can from all of your posts. I have already met some of you wonderful people. I feel lucky to have found you all , and this site. I don't feel so alone with this process now, and that is a blessing that is beyond any words I can type here. Instead of just sitting here and looking into the jungle for answers, I now pop in here every day to educate myself further, and in just a few days I have learned way more than I ever wanted to know about this disease. Thanks to you all for allowing me into this special place, and sharing your experiences. 

Bob

We are one.

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Lori C's picture
Replies 4
Last reply 9/19/2011 - 7:24am
Replies by: MariaH, washoegal, Lori C, Anonymous

Along with a friend, I am hosting a benefit concert in honor and in memory of Will as the "yarzheit" (year's time) of his death approaches.  I wrote a lot about him here and hope it's okay that I share this:

Here is a blog diary on Will, and the event:   http://www.dailykos.com/story/2011/09/18/1017570/-Help!-%28please!%29?vi...

Here is a Youtube promo for it that tells a little about his life:  http://youtu.be/25hef8mb0SQ

 

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NicoleinVA's picture
Replies 5
Last reply 9/21/2011 - 10:15pm

Hello,

I had a WLE and SLNB on 8/11; thankfully the SLNB was clear and at the beginning everything healed very well.  The WLE was done on my lower left outer calf.  They were able to close w/o skin graft and first three weeks all did well.

The incision on my leg re-opened in the middle two weeks ago and I'm told it will have to heal from the inside out.  I just finished up a 2 week dose of Keflex for minor infection and keep in wrapped.  I clean w/soap & water 2-3 times/day and first was using thick coat of bacatracin and now have been given saline solution.  I clean, soak gauze pad w/solution and re-wrap, doing this 2 -3 times/day.

Has anyone experienced anything like this and if so, do you have any advice?  I go back to derm in 2 weeks for another skin check and have to have at least 2 moles removed.  I'm hoping to recover from this surgery before I start w/more stiches.

Thanks for any advice you can offer. 

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My 54 year old father was diagnosed with Stage IV melanoma this past April after a tumor was discovered in his knee.  He just finished up a 4 dose cycle of Yervoy- the FDA approved version, not a clinical trial.  The scans just came back and he has new tumors and his current ones have continued to grow.  His oncologist provided information about Dacarbazine and a new clinical trial with a drug called SCH 727965 which is in a new class of drugs caled cyclin-dependent kinase inhibitors.   After reading the research consent form,  I realize that the purpose of the study is to establish a safe dosage and that it is a very new treatment.  I was curious is anyone has had any experience with this trial or drug?

What have others next step been after Ipi did not work?  That is the only treatment that he has recieved and it appears as though there are alot of other drugs/options out there.  We just do not where to go from here, any advice would be greatly appreciated!

Thanks,

Meaghan

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NYKaren's picture
Replies 8
Last reply 9/20/2011 - 5:10am

Sorry I haven't posted since I went in last week...

Here I sit, scratching myself silly, giving you the high/low points of the treatment.  Going back in tommorow.

High points:  Never got the extreme chills/tremors.  They could definately happen this week, though.

Didn't get diahhrea till the day before last.  Lomotil took care of it right away.  I think it's because I went in constipated.  .   Hint, if you think you have to go, unplug yourself and get in there!

Didn't vomit.

Didn't halucinate, thank G-d.  I was really scared about that one.

NEVER had low urine output.  They were amazed.  I highly recommend bringing a case of water--it really helps.  Toward the end, when I couldn't eat, lived on water and bananas. Besides, my throat was so dry and lips peeling that I had to keep sipping water.

It was hard getting the Picc line in, they bent two (needles, wires, whatever they were)  By the end of the week, I wanted to rip it out myself.  There's got to be something else that doesn't itch so much as the patch/tape they use to secure it, and tomorrow I'll find out.

Low points:  My skin was lobster red (but didn't peel.)  Itch was and is so bad, nothing relieved it. was so swollen that at times one eye closed.   Not Doxipin, not Adarax, not Zyrtec.  In the hospital a shower followed by Sarna helped for about 10 min.  Ditto for home and oatmeal baths.  Just sent my hubby out for Tide Free & I'm rewashing everything today.  I just cut all my nails off and the skin is all peely underneath.  yuk.

Definate confusion which still hasn't cleared up yet.

 As mentioned, extremely dry throat and peeling lips.

Blood pressure did get low, so did potassium.  They're quick to remedy that.

I gained 35 lbs. of water.  As soon as the 2nd day, my underwear was so tight I had to cut it w/scissors on the legs & waist.  This time I bought 2 packages 2 sizes larger. Took off wedding ring and watch on first day.

I have to say, Dr. Sznol was there 1-2X/day, every day.  What a dedicated man.

Recovery: Exhausted and itchy.  Appetite came back pretty quickly, strength did not. Balance was horrible.  When we went for my check-up this past thursday, my husband parked the car, I got out my side, and promptly walked into a parked car.  When I saw Dr. S., he asked what % of normal I felt.  I said 60, and if he expected more, he was out of luck.  He laughted and said as long as I felt 60-70%, i was fine to go back in.  The important criteria was my labs, and apparantly they're fine.  We got home Sun. around noon, and I slept almost 'round the clock till Wednesday-Thursday.

I'm scared about the upcoming week because I know it can be so much worse.  Also, since I did ipi & had the requisite side-effects, I kept asking him if I wasn't having enough, because with ipi, it's believed that the presence of side effects means that the body is responding.  He said with IL-2, it's not the same and of course I did have some, just not the major ones.

Oh yeah,  I did in the hosp. & will continue to put Aldera on the area every night.  Interestingly, that skin is now painful, red and scabby.  They're very interrested in the result of the combination of the IL-2 & Aldera, and so am I!

So  I think that's it for now, sorry for not keeping up earlier.  I really lost interest in everyting, didn't even check Facebook.

One last thing, so grateful to have my husband there; he was wonderful!

be well everyone,

karen

 

Don't Stop Believing

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Wally's picture
Replies 9
Last reply 9/20/2011 - 3:03am

Hi all, I have posted on previous occasions and am now totally confused and possibly paranoid but I really do not know what to make of these developments so I need to rant and rave.

About a month after the malenoma tumor was removed from my right lung in April 2011, I started developing pain in my ribs, initially on the right side close to where the tumor was. In July I felt that the pain was no worse but consistant and very eratic and would move accross my ribs at times. Although initially the bones felt sore when I pressed my fingers on them, this is no longer the case. The pain is pretty severe at times and seems to stem from somewhere behind my ribs. It is like a severe stitch and other times like a stabbing pain and again at other times it feels as if it is on fire.

A Tc99 m MDP Three Phase whole body bone scan was done that indicated possible osteoblastic skeletal metastases with a proviso that recent surgery could also have been responsible. However, the pain continues. I was given a nerve block as the doctor who removed the tumor again indicated that the rib may have been damaged during surgery. Also apparent uptake left occipital need further evaluation to exclude metastasis in view of rib lesions

I went to my Oncologist on 7 September and a blood count was taken. This was clear / normal. Just to make sure a further scan was ordered. I only had a pre-scan to identify possible lesions. Nothing came up so no further scan done. The verdict being that the scan indicated a possible clean break of the rib during surgery.

I will now be have the ribs strapped (like rugby players have done when they injure their ribs) tomorrow (Monday)

My question is - can it take so long (some 5 months later still in pain) for a rib fracture to heal? Are the pains I am experiencing in line with a rib fracture. Surely any unusual movement, a cough or heavy breathing should induce pain. Surely pressing against the ribs should be a painful experience? I have none of this, just a constant pain that comes and goes as it pleases and is not isolated to one spot. This makes no sence to me. I do not want to sound like I am wishing that there is someting there but I just do not feel comfortable that they have done all they could to determine without any doubt whether or not I am disease free (NED) for now.

I just need to have closure on this topic and any feedback will be most welcome. I have had no treatment at all up to now, which is a blessing, but I am so afraid that there may be something lurking inside me that has not been picked up as yet and that any procrastination could be to my detriment. Is there anything else that can be done or is there anybody on this form that has had a rib tumor following a lung tumor. How was it identified - pain or any other way? Please help me.

I thank you all for your support. God bless. Wally.

The sun shines at the dawn of each new day even though it may not always be visible.

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grungle's picture
Replies 2
Last reply 9/18/2011 - 8:17am
Replies by: Lisa13, FormerCaregiver

Hi all.

My wife just had her second dose of dacarbzine for secondary in her liver.  She is in a lot more discomfort this time, more so than the first dose.  I was just wondering what side effects others who had dacarbazine had,  if any, and how many doses were given.  We are having a ct on 29 September to judge its effectiveness. thanks

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MariaH's picture
Replies 5
Last reply 9/19/2011 - 8:11am

I know that so many people on this board have been wondering about Val, and  just wanted to let you all know that I got an email from her today.  She plans on updating the board as soon as she is feeling better.  I think she's a little beat up right now, so feel free to post some positive thoughts to her and let her know you're thinking of her -

Way to go Val!!

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