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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NYKaren's picture
Replies 3
Last reply 10/13/2011 - 4:24pm
Replies by: KatyWI, MariaH, rbruce

So, for those of you who've done IL-2 and gotten the itch (real bad), when does it go away?  Today starts week 3 from the start of the second week treatment.  I can deal with stuff still happening, but I'm living from Atarax dose to next Atarax dose.  50mg/dose, along with Doxipin, which is supposed to help.

Oatmeal baths feel great (especially when they're hot (a no-no)) followed by Sarna creme is a great fix for about 10 minutes.

Anyone else have any secret cure?

I can' wait to get scans--almost all the mel crusted under the aldera creme and most of it is off (leaving pigment behind) 

I'm so hopeful, I don't want to get shot down!

Thanx,

karen

Don't Stop Believing

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jim Breitfeller's picture
Replies 22
Last reply 10/12/2011 - 5:46pm

So before you try PLX4032 (ZELBORAF/Verurafenib) as one of your trials if you are BRAF+, You may want to look into a BRAF + MEK trials first.

"Acquired resistance to BRAF inhibitors mediated by a RAF kinase switch in melanoma can be overcome by cotargeting MEK and IGF-1R/PI3K" -Dr. Meenhard Herlyn

There is also some new out about  BRAF inhibitors + Metformin.

Best regards

 

Jimmy B

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TracyLee's picture
Replies 6
Last reply 10/15/2011 - 5:26pm

Hi y'all,

Just found a painful lump in my breast last night. Ironically, saw my gyn last week and he missed it. It's more pronounced sitting up, and he examined me lying down.

I'm on BRAF, and have responded very well. I do get ereythema nodosum (painful lumps) as a side effect.

I'll call both Yervoy and Zelboraf patient info lines asap today. I feel I'm in the wilderness: just released by U of Penn to my local onc. And I'm the first HE'S  treated with either drug.

How much do I panic, and how much is likely to just be a side effect?! I'll call the local onc, as I'm due for scans, and I'll call my gyn for a mammo (which I'd told him I wanted to skip, frankly).

Have their been folks with BOTH breast AND melanoma on this board, with both cancers active at the same time?

My head is swimming!

Thanks,

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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James from Sydney's picture
Replies 2
Last reply 10/12/2011 - 8:16pm
Replies by: bcl, JerryfromFauq

Researchers find 2 new Genes which might one day assist us in predicting the risk of getting Melanoma.

 

http://theconversation.edu.au/understanding-the-genetic-basis-of-melanom...

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Joan C's picture
Replies 16
Last reply 10/12/2011 - 2:39am
Replies by: bcl, Donna, Anonymous, Joan C, Donna M., jax2007gxp

I apologize if someone already posted this, but I just read it.  I hope all the other states follow suit!

http://www.msnbc.msn.com/id/44837627/ns/health-skin_and_beauty/#.TpIZeM3...

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momof2kids's picture
Replies 18
Last reply 7/25/2012 - 7:46pm

I know many out there have never had any Brain Tumors, but others of us, like myself, have had Brain Tumors (One removed via Craniotimy , the other removed via Gamma Knife).

I'm assuming that having Brain Tumors/had Brain Tumors is worse than those out there who have never had any Brain Tumors.  Are getting Brain Tumors as easy to get as other tumors in your organs/body parts, or is it tougher for the cancer to travel to the brain, so if you are lucky enough to never get Brain Tumors, you're a lucky one, etc?

Are there any reports/data out there that proves having Brain Tumors in the past, or currently, that we are less likely to survive, than those out there who have never had Brain Tumors?  I'm assuming there is, but I'm still just stuck on this end of life rut I'm stuck in, wondering how many years I have left if I'm lucky, and if no new Brain Tumors come back to haunt me again.

I'm just not ready to accept living everyday happy as can be, happy to be on this earth, I'm still stuck in this I'm going to die before I'm 40 unless I'm extremely lucky.

I know there's plenty of Stage IV survivors out there, but did many of them have Brain Tumors, or were they the lucky ones to only have regular body tumors, and never touched the Brain?  I know none of us have control over how long we're here, but I am hoping that mine will be 10+ years, just to see my kids grow up, but I don't feel that the treatments out there will give me that (I'm BRAF negative, so right there I lose a few treatments/drugs).

 

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deardad's picture
Replies 6
Last reply 10/9/2011 - 5:54pm

Hi just a bit alarmed that my dad found a swollen lymph node in his neck tonight after three weeks on vemurafenib. Two small tumors on his body have flatterned out completely but now we have found this lump in the neck? He did have a sore throat for a week before but everyone is so stressed out! Does that mean BRAF isn't working or are we just being overly worried? Im so over this stupid disease and its so heart breaking to see my dad and mum go through this...any information would be helpful please.

Daughter of the patient.

Nahmi in Melbourne.

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I am trying to do some research and writing on the clinical trial system  - specifically as it pertains to treating advanced cancer.  I don't feel Will, the person I lost to melanoma, was served well by the system, but want a broader range of opinions and views on it. 

If anyone could share articles, resources, opinions, experiences - I'd be most appreciative.  I'm doing work on a graduate degree in public administration and am doing it for this reason - and personal ones.  Please respond here or email me at Brennan07@aol.com

 

Thank you!

Lori, caregiver to Will, who has been gone a year on Oct. 6....

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Anonymous's picture
Anonymous
Replies 9
Last reply 10/10/2011 - 12:04pm

Have been dealing with Melanoma Stage 4 to Liver for over a year. Multiple traditional therapies and clinical trials attempted. Not much success. Anyone have a recommendation for alternative therapies such as supplements/health food items??

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jax2007gxp's picture
Replies 6
Last reply 10/13/2011 - 11:27am
Replies by: Anonymous, jax2007gxp, Vermont_Donna, FormerCaregiver

Hey all,

Hoping someone is home on a Friday night...last night as I was falling asleep I noticed what feels like a small but swollen, sore lymph node in the left groin.  I fell asleep and forgot about it until just now when I felt it again.  Could mel have jumped from the right side to the left and so quickly?  I just had scans on 9/6 which only showed the mel in the right groin and the LND was done just a few days later on 9/9.  I know there are multiple reasons for lymph nodes to get irritated, but I have rarely ever had groin ones swell throughout my life.

I see an oncologist for consult on Monday and my surgeon on Tuesday, but I think I am going to need some reassurance to get through the weekend.

Many thanks,

Jacki

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Lisa13's picture
Replies 3
Last reply 10/8/2011 - 12:59pm

I'm currently scheduled for my 4th round of ipi next Thursday. I've also been sick with my first cold in 2 years which has finally let up after 10 days.  That being said, do you know if a weakened immune system via a virus could cause ipi not to work that well, or does the power of ipi work on the immune system in another way?  I also started Entocort (steroids)  today for a possible mild inflammation of the colon which I'm not happy about.  I know steroids also weaken the immune system so I'm upset that I was so close to completing this treatment without my immune system being compromised.

Does all this make sense?  Do you have any knowledge whatsoever?  I'll know next week if my ALC #'s are still going up and I really hope they are.

Thank you,

Lisa - Stage 4 

Many impossible things have been accomplished for those who refuse to quit

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Lisa13's picture
Replies 3
Last reply 10/8/2011 - 1:02pm
Replies by: Jim M., mclaus23, mombase

Has anyone experienced hot flashes on ipi/Yervoy?  Mine started today and just wanted to know if this happened to anyone else. I have my 4th infusion next week.

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Steve W's picture
Replies 2
Last reply 10/9/2011 - 10:16am
Replies by: Steve W, JerryfromFauq

I'm currently in a trial with GSK using the braf drug GSK2118436.  The mets in my lungs have all reduced in size and even disappeared in my liver and spleen.  But a met in a porta caval lymph node doubled in size on my last scan and indicated "hot" on a followup PET scan.  Apparently it is not responding to current treatment.  i will have a followup appointment in a few days to discuss my options, but my understanding is that surgery may not be an option.  Has anyone gone through radiation treatment on porta caval lymph nodes?  Any other advice?  

 

Thanks,

Steve

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cwu's picture
Replies 2
Last reply 10/14/2011 - 10:12pm
Replies by: cwu, FormerCaregiver

Hi everyone,

My father has in transit lesions a year after surgery to remove tumor on his right heel. These lesions mostly on his calf and they are popping up on his skin so you can see them (not sure if cuteanous is the right word).  He started his first dose of Yervoy (IPI) almost three weeks ago.  Since that infusion, his lesions have started drying up alot.  There is one that is quiet big and the skin around it is so dry that it started cracking and bleeding.  I was wondering if anyone has similar experience and what recommendations you have.  It is not bleeding alot and it doesnt cause him pain but we are concerned about infection. We were hoping that since the lesions are drying, they would start falling off.  We have taken pictures and sent them to his Dr. and waiting to hear back.

Thank you for any suggestions.

Chau

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emilypen's picture
Replies 16
Last reply 10/8/2011 - 6:45pm

Hi All,

My hubby started on chemo this week, Monday. My question is how quickly does it normally show results after 1 treatment?

He has a lot of sub-q mets on his back and chest, and we felt they were starting to shrink before the treatment on Monday although the doctor felt IPI had not been successfull in any way because his internal tumours had grown so much.

Now however , almost all of the sub-q's on his back and arms are starting to flatten out and get smaller. I noticed it on Tuesday and thought there is no way it's the chemo working this fast?

 

Would love to hear others thoughts and/or experiences?

 

thanks,

Em

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