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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Jewel's picture
Replies 1
Last reply 4/7/2013 - 9:34pm
Replies by: Sandy11

Hello everyone,

 

My husband and I got the wonderful news that his scans have come back clear, that now makes us 18 months since

last recurrance. On my husbands follow-up visit our Oncologist sees a mark on my husbands scar from his CND on his groin

that he would like to have biopsied. My husband and I have also been watching it but thought it was just a mark from his surgery,

it is brown in color, not dark. Needless to say I am now worried but my husband seems less upset since the scans have come back

clean......this is such a rollercoaster for all of us. I guess my question is this...what did your recurrances look like? My husbands

came in the form of nodular and dark or clear.

 

Thank you

 

Jewel

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Judy D's picture
Replies 9
Last reply 4/8/2013 - 11:19pm

I have been on Zelboraf for 18 mo. Had recent CT and NED, yea! My question is has anyone taken a small break from Z? I want to go on vacation and would like a break from the side effects. I am thinking only for one month. What are your thoghts or experiance in this area?
Thanks, Judy

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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Jaryllane's picture
Replies 24
Last reply 4/11/2013 - 4:42pm
Replies by: Jaryllane, Kim K, Anonymous, NYKaren, kylez, Amanda, Linny

I had melanoma on my collar bone in 1981 which was removed surgically and I was fine for decades.  Now it has come back in my lungs.  I had one tumor removed last summer, July 2012, and now I have 7 small tumors in my lungs.  My oncologist is recommending a clinical trial of MK-3475.  Has anyone had experience with this drug? 

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buffcody's picture
Replies 8
Last reply 4/8/2013 - 5:35am

My last Yervoy infusion was January 2. Now in April, the itching and rash are worse than ever, though still a very small price to pay if it is doing its job.  So no big complaints but just curiosity in learning what other people's experience has been with this side effect weeks and months after the last infusion.

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Sandy11's picture
Replies 10
Last reply 12/12/2013 - 2:31am

Hi, my husband is stage 4 and finished Ipi treatment 4 months ago. He is still experiencing significant fatigue.  Has anyone had this happen for this length of time? Thyroid and other tests came out fine. On a good note.. have some positive results.. awaiting more tests later this month. Thanks to all the warriors. I look forward to your replies.   Sandy

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joy_'s picture
Replies 5
Last reply 4/6/2013 - 8:35pm
Replies by: Linny, joy_, awillett1991

Hi everyone!  My husband has been on Zelboraf (960mg twice a day) for almost 3 weeks now.  He has the "usual" side effects of body rash, fatique and a little hair loss, but one that he is having that we haven't seen discussed anywhere is lymphedema.  He had a radical LND (groin) almost 3 years ago and has never had much of a problem with lymphedema in that leg.  It has been very mild over the past few years, but since he has been on Zelboraf it is a problem and very uncomfortable.  Compression stocking doesn't even seem to help.  Any thoughts on why this is with Zelboraf?  Just curious if anyone has any insight or experience with that.

He only has 3 more weeks to go on Z and then on to Ipi as part of a trial so I feel certain this is temporary, and we will be trading these side effects for a new ones soon....

Thanks for any feedback and keep up the good fight!!!

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/24/2013 - 1:13pm
Replies by: MeNDave, gabsound, NYKaren, Linny

Hi Julie,

 

I was happy to see you posts today. How are you doing? Are you still on Pd1?

 

I am sending positive thoughts & prayers your way!

 

MaryBeth

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Hi Tim,

I posted around 5 posts down the board about the FDA announcing its decision on June 3 about the two GSK Drugs--BRAF Inhibitor and MEK.

CAN YOU PLEASE READ THE POST AND MAKE ANY CORRECTIONS/COMMENTS YOU MIGHT HAVE?

Many thanks & have a great weekend,

Karen

Don't Stop Believing

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anon's picture
Replies 12
Last reply 4/22/2013 - 7:37pm
Replies by: parkmk80, anon, Anonymous, Janner

how many moles/atypical moles do people normally have, when they are diagnosed with atypical mole syndrome? i am reading mixed info online. thx!

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Mickey n Jo's picture
Replies 13
Last reply 4/8/2013 - 8:18am

My dear loving husband lost his battle with melanoma on Thursday afternoon.  We were in the process of having him transferred from the hospital to a palliative care facility, but his vital signs became too unstable to move him. Even though he remained in the hospital, he was surrounded by his loving family and passed on peacefully and in no pain.  I can't imagine life without him, but I have to be strong and keep his memories alive in my heart forever.

To all of you, I thank you for your support, enlightenment and advice, it truly meant the world to both of us.  Please keep my husband in your prayers, and fight this disease with everything you have. Even though it was too late for my husband, you can win your battle.

                                                                                   Bless you,

                                                                                       Jo

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hbecker's picture
Replies 7
Last reply 4/8/2013 - 4:05pm

After reading Janner's reply to a post yesterday, I've decided I'm ready to move beyond "worst case scenarios" - as she was explaining to a MPIP newcomer that this board is primarily active for newbies and people who are actively battling melanoma. That doesn't mean I'll stop reading this page - only that I don't plan to make it part of my "go-to" routine anymore.

The problem I'm having is that I don't know where to move on to. I know I still need help coping with my husband's melanoma battle, at least for this transition now that his participation in the GVAX melanoma vaccine trial at Johns Hopkins is coming to an end. "Watching and waiting" is not my cup of tea, but it seems that - assuming his scans in three weeks show he is still NED, which I do assume - there's nothing else we can do.

I'm interested in joining a melanoma support group in the D.C. area. Does anyone know of one? If not, is there anyone on this board who wants to get together and talk from time to time?

I've done a web search for support resources (see my blog post at http://www.hazelbecker.com/?q=content/looking-new-support-resource if you're interested) but it hasn't turned up anything. I'll check in with our oncologist about this when we see him next, but in the meantime, please email me off-list if you might want to get together, even if only once. I'm not sure I'm a long-term participant, but I could use some companionship at this point in the journey.

Thanks -
Hazel

blogging at www.hazelbecker.com

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ljhncj12345's picture
Replies 2
Last reply 4/5/2013 - 1:03pm
Replies by: kylez, G-Samsa

Can anyone answer question I have about Ipi and LFT?  Larry had 2 infusions and was supposed to have third today. Cancer center called and said lft was not where they wanted it to be. Doctor is out of town so cannot talk to him until next week. I got a copy of lab work and ALT was465 AST was 318 every thing else was normal range. They are redoing labwork next Tuesday.

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Hello all,

I read over on melanomainternational.org that the FDA has published June 3 as the announcememt date (I hope I'm getting this right--hopefully Tim can clarify) for decisions on both of GSK's drug submissions--the BRAF inhibitor and the MEK inhibitor.  I'm not sure if that's a firm date or not--again, maybe Tim knows.

The drugs were submitted separately as monotherapies, so I guess there's the possibility that one could be approved and not the other, although it seems that both will be approved.  The fact that they will have separate approvals begs some questions, such as: what happens if someone stops responding to Zelboraf...will the MEK inhibitor be added to the Zel, or would the person be prescribed both drugs?  When someone first begins the BRAF drugs, will we be able to receive uniform insurance coverage for both, or will it be an insurance company-by insurance company decision?

You can hop on over to the site and look at the entire post...I didn't know if it would be permitted to cut and paste it here.

Karen

Don't Stop Believing

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sharmon's picture
Replies 12
Last reply 4/6/2013 - 9:43am

is almost over.  he is in hopsice in ohio.  oxygen to 60.  blood pressure is low and his temperature is low,  heres the kicker.  after not having anti pd 1 since the end of jan and his tumors growing in feb,, they are now shrinking and he is to sick to move from hospice to any kink of nursing care for iv fluid or any kind of oxygen to help him live.  I can see the big tumor almost down to nothing and the the smaller one on his flank is gone.  they will not consider that at this point there is anything that can be done since his system is shutting down. 

the lesson from this is to not go to hospice care after an immuntheraphy because it can take some time to work. 

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