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.

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Hi all,

Just wondering if anyone has experienced pain in/around tumour sites as th tumours are shrinking?

My husband is on Mek/PI3k trial that we know has worked ( over 15% shrinkage so far). He recently had to stop taking the drugs so a side effect could clear up and when he started back on the drugs about a week into treatment he started to get aches and pain in the areas the cancer has invaded.

This happened when he first started the drugs months ago and then gradually tapered off as everything shrunk or stopped growing.

Part of us thinks it's all good, the part of us is of course scared.... but i thought i'd reach out and see if anyone else had similar experiences?

 

thanks,

Em

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elefk's picture
Replies 14
Last reply 2/13/2011 - 8:40pm

I spoke to someone tonight who is NED after taking a concentrated regimen of Xango mangosteen juice, one bottle a day for 21 days along with one gallon of distilled water, after all other treaments had failed for stage four melanoma. Any thoughts?

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Rick from NC's picture
Replies 9
Last reply 2/13/2011 - 8:03pm
Replies by: ellen - dads daughter, JoanR, Anonymous, michelleg

Is anyone attending the UNC Melanoma Day program in Chapel Hill on Feb 23?

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Jan in OC's picture
Replies 8
Last reply 2/13/2011 - 6:35pm
Replies by: Jan in OC, Anonymous, KatyWI, Rocco

Sooo....when my husband broke his humerus bone in his right shoulder, the ER put an "immobilizer" on him.  Everywhere the elastic touched his skin, he broke out with nasty rash and hugh blisters!  Our PCP and Onc consulted and finally decided that the IPI infusion "assisted" his body's severe contact allergic reaction.  Unfortunately, they had to give him steroids, which the ONC said would decrease the effectiveness of the IPI :(  

Doc said the steroids will make him grouchy.  "too late, he's already there"!!!  I have been wearing my "nurse jackie uniform" all week. 

We go to the Orthopedic doc on Monday to check his arm swelling (lymphadema is not helping)!  On Wednesday, we go to UCLA for his second IPI infusion. RadOnc called me today and scheduled his brain MRI and mask simulation on Wed, 2/23, then SRS can be scheduled (maybe the week after, can't wait). I hope there is still only one small tumor.  In between all of that, we will be getting treatment for the blistering and broken arm.  Keeps us busy and out of trouble!

Took the paperwork to the lawyer this morning for our bankruptcy and will have to move somewhere new by spring, probably out of state because SoCal is just too expensive to live on our reduced income.  Damn bank won't give an inch.  Gotta get packed with help from the one armed man!   Will have to find a place to live (rent), new docs and treatment close to wherever we go, so many things to worry about.  Just trying to think of it as a fresh start. yeah.....

What a freaking crazy time we are having!!

Jan, wife to Dirk

laughter is the best medicine

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Dawn's picture
Replies 13
Last reply 2/12/2011 - 10:41pm

My nine year old daughter just completed her 3rd infusion of ipi.  She was diagnosed in Nov 2010 with Melanoma of the CNS witha primary in her brain....very rare for a child.  She is tolerating it well.  Itches tremendously at times, but otherwise we are not seeing many other problems.  Clinically, she is doing well.  This is the best she has felt since she was diagnosed.  Prior to ipi, she went through WBR and was on temodar.  We were told that she is the only child on this right now...we had to work with the doc, the pharmaceutical company, and the FDA for this to go through.   My question is,  are there any other children out there that anyone knows about that are on ipi?  I would like to connect with them if possible.  Thanks Dawn

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dawn dion's picture
Replies 5
Last reply 2/12/2011 - 7:30pm
Replies by: lhaley, carol b, Anonymous, KatyWI

Wow talking about this stuff seems so Weird!!!   Like I should be talking about someone else.  In Jan 2010 I went to my Dr. and asked to have this spot removed from my  left arm.  It had been there forever and for whatever reason it was starting to make me nervous.   She told me to wait six months.  Well 4 1/2 months into the six  it ulcerated.  I knew this couldn't be good.    Had it removed told stage 3 melenoma had a trace amount in the sentinel node and had the remaining lymph nodes under my left arm removed.   Told 30% chance it would ever return and went on ipiluminad (sp)   The whole time I was doing the drug I was told this is what you want to be doing - great  results with this drug.  Three months after I started the trial guess what I am now Stage IV.      I have two beautiful girls and I am scared out of my mind. 

 My Dr. called me the other night and said great news you tested positive for the gene change so now we can move on to the next trial.   Does anyone out there have anything good to say about this.  Because right now I am feeling like a guinea pig.   I read melenoma girls story and I swear it was like reading my own, with the exception of being told that interferon would do me no good and to go with the trial - I feel like I have been failed so many times by my Drs that I don't know what to do or think next. 

I know there are sooooo many of you out there in the same boat - but I feel really alone and scared beyond anything I have ever felt before - Every time I look at my girls all I can do is cry because I feel like I am failing my family.   I was recently told to get off my a** and stop feeling sorry for myself.  In time i know I will but for right now I am feeling very sad in Florida.

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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KellieSue's picture
Replies 19
Last reply 2/12/2011 - 3:42pm

Well it's been three weeks since I did 8 bags of IL-2. Had scans last week and there looks to be new tumors in the lungs. Damn!

My dr. said there's a small chance if we redo scans in a few weeks it could show better results but we are both not counting on it.

I don't remember much of the actual IL-2. I was out of it most days. Hubby said after bag 8 I was unresponsive so Dr made the call to stop. I was hoping to take a week off then do more but had a tough recovery.

Came home on oxygen, stats were a bit low but feeling better now. Back to work.

I just had a clean brain MRI(whoo!) so I got tested for B-RAF. Hoping that comes back positive and I can get on the trial. It just (within the last week) came to my hospital so I'm positive it could work for me. I'm feeling down and frustrated, I was really hoping IL-2 would do something for me. My cancer seems to be picking up lately and it scares me.

In other crappy news my friend who did the ALT trial with me is having a rough go of things. A few weeks back tumors were found in her brain, she did radiation and seemed to be doing okay. Tumors were gone. Her lung tumors seemed to be responding very well to ALT. Then on Wednesday of this week she was taken to the hospital unresponsive. Found to have numerous new brain tumors. She was moved to Pallative care yesterday. I'm sick to death of this. She has 3 young girls, she's just 36. I don't know what to say or do for her family. I went to visit and cried like an idiot. I don't understand, I just saw her last Friday.  Can I scream now? Please keep her and her family in your thoughts.

 

Kellie(from Iowa) Stage IV, waiting to do B-RAF????

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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dafad777's picture
Replies 10
Last reply 2/12/2011 - 2:57pm

I was wondering when i go see the melanoma specilist if anyone knows if he would recomend slnb or should i say something about it.only because of what i've read said when they go back in for re-incision sometimes they do the slnb.no one did one on my daughter and they went back in and took 5mm more off her ear.and she has not had an xray,a cat scan,pet scan nothing.i think she should have already had something.her first surgery was oct 26th.2010.

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Melanoma Mom's picture
Replies 8
Last reply 2/12/2011 - 7:29am

I think we should all E-mail this "doctor" and set him straight, as I have already done. His information on Melanoma is so incorrect and ridiculous, it made me want to scream and laugh at the same time! What a fool. He actually states that using sunscreen has increased the cases of melanoma!

http://www.rocklintoday.com/news/templates/chiropractic.asp?articleid=96...

 

Join me in encouraging him to either remove or correct his article.

drdozier@surewest.net

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Lisa - Aust's picture
Replies 2
Last reply 2/12/2011 - 1:40am
Replies by: Lisa - Aust, EricNJill

G'Day Everyone,

http://www.melanomaroadtripusa.com/blog/

Thought some of you may be interested in this. For those of you in the states, keep your eyes peeled for Clint and Jay! My partner Craig and myself have been lucky enough to get to know Clint over the pas tfew years and he really is an amazing person. He recently won 'Young West Australian of the year' which put him in the running for 'Young Australian of the year'. Unfortunately he was pipped at the post by a girl who sailed her boat around Australia. If you ask me, the difference that Clint has made to so many peoples lives here in WA made him the most deserving of the award, but it wasnt to be. Hopefully a few of you will check out their site, follow their journey, and may be lucky enough to come across them.

All the best

Lisa - Aust 

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I'll hang around in the melanoma section of chat for a bit in case you want to talk.

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mkummerle's picture
Replies 6
Last reply 2/11/2011 - 11:01pm

Diagnosed Stage IV March '09.  Bone Mets to spine several tumors throughout body and lyphnodes.   Tried Interferon for nine months, GMC-SF for four months, Interleukin II,  Temodar and Ipilimamub.  Negative for BRAF.  All have been failed treatments.  Next line of therapy will be standard Chemo with Carboplatin and Taxol.  I'm  feeling like nothings going to get me a response.  Feeling like it's not worth it to start next treatment only to be set up for failure again.  I'm about ready to just let it take its course.  Just venting, thats what this board is for!   Thanks all!

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nickmac56's picture
Replies 9
Last reply 2/11/2011 - 10:43pm

My wife's 12 week PET/CT scan was not good news.  Her original lung tumor has grown, plus multiple mets in both lungs, lymph nodes and kidneys, plus skin tumors.  Maybe there will be some lag effect, but given disease progression it does not seem consistent with what other late responders on Ipi have experienced even by week 16.  We are going to try 4 weeks of Tamoxifin to see if hormones have anything to do with it (weak link and a long shot but women have more melanoma than men and my wife is convinced tumor ignition times to her cycle), do the 4 week follow-up Ipi scan, and then go the Interleukin-2 route (a two week hospital stint).  Also going to see Dr. Cassian Yee at Cancer care Alliance (U of W professor) about his clinical trial (taking your own T-cells, creating hordes of them, bathing them in anti-cancer stuff and re-infusing).  Our oncologist does know him, and is pretty skeptical of it as they've only had one long term durable remission, but will support us.  Timing is fine as it takes couple months to harvest enough T-cells - they will use previous tumor already excised - so we can do the IL-2 route and still do the UW trial.  After that, maybe the NIH trial.  But we are clearly in a race against a disease progressing faster than the meds are working . We are also looking into all the naturopathic stuff, even though we are already on the anti-cancer diet.  

Questions:  anyone on a non-randomized NIH trial?   A friend has also told me about some clinic in Tijuana with some success with melanoma patients (yea, I know...)  - anyone have any experience with it?

thanks, Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Hi gang. I've been on Social Security Disability for about 5 years due to melanoma. A stage III diagnosis is an automatic yes, and I was Stage IV when I applied. Anyway... I have THANKFULLY been NED for 4 and a half years, and have simply been living my life without the stress of having to hold down a job. Hubby makes a good income, and my disability helps us pay the bills.

Well, SS sent me a re-evaluation form to decide if I still need to be on disability. So I'm a bit afraid that they will determine that I'm no longer disabled, even though I'm still considered a stage-IV patient. (I also have lymphedema, which lately has been more of a hindrance than the melanoma has).

If you or someone you know was on SSD for melanoma, and lost it... would you let me know? OR if you've been re-evaluated, and they let you stay on it... please also respond. It would help with my nail-biting!

Love to you all!

Jackie Doss, Stage IV NED... Dallas, TX

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Angela C's picture
Replies 4
Last reply 2/11/2011 - 7:16pm

Hey everyone.

I just had my first cycle of IL2 in January. My second week in the hospital was the week of the 24th. After each round, I have been experiencing a strange sensation in my head. I would describe it as a medicine head feeling. I just feel kind if out if it. I am kind of light headed and dizzy. It us a hard sensation to describe.

I had this after the first week and the doctors seemed surprised by it and not sure what to make of it. I was originally attributing it to the anti anxiety meds I had taken, but those have been out of my system for a week and a half now and this feeling is still here.

I gave a check up with the doctor on Turs and we'll definitely be talking about it. I just wondered if anyone else had experienced something similar.

I can't help but have the thought cross my mind that I could have a brain metastasis causing these symptoms. But, I'm trying not to freak out.

Anybody have a similar experience??

Be kind, for everyone is fighting a great battle. -Plato

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