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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BrianP's picture
Replies 8
Last reply 4/2/2012 - 10:13am

I'm in my 4th month of interferon treatment.  All things considered it is going well.  I wanted to see what other patient's oncologist recommend for their scan schedule.  From what I've seen it seems like most recommend a brain MRI and petscan every three months for the first year.  I'm coming up on my 6 month scan and the oncologist is only recommending the petscan.  I'm insisting on the brain MRI as well.  Was curious what others are doing. 

Brian

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/2/2012 - 7:06am
Replies by: jim Breitfeller
JimNewJersey's picture
Replies 1
Last reply 4/2/2012 - 5:13am
Replies by: aldakota22

So how will the rest of the weeks go. Are the effects cumulative, or is this it?

Jim

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Anyone had a fall in platelets with IPI?

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deardad's picture
Replies 4
Last reply 4/2/2012 - 1:56am
Replies by: LynnLuc, FormerCaregiver, Anonymous, melmar

I'm interested whether we should take my dad who has a low tumor burden over to the US and try to get into a ANTIPD1 trial. Is this realistic? Do they take foreigners? Where would you recommend?

Thanks in advance

Nahmi

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Janis UK's picture
Replies 4
Last reply 4/1/2012 - 7:47pm
Replies by: DonW, Janis UK, triciad

Hi folks, It has been about 3 years, or perhaps longer since my last post. I used to post every year on the anniversary of my NED status but as time has passed Melanoma is way down on my list of prioraties....hard to believe I know, but this is how I feel. The MPIP has changed so much since I last posted that I have had to reregister. I am not sure if all my previous post are retrievable for any of you to read but I am still NED and being diagnoised in 2001 stage 3b I am pleased to say life is good. My children have married and I am now a Granny six times over. Melanona is a horrible cruel disease  but in many cases it can be life changing and not life ending. My thoughts , love and hope go to all those fighting, waiting, recovering and most importanly living  

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So how will the rest of the weeks go. Are the effects cumulative, or is this it?

Jim

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bblapril's picture
Replies 2
Last reply 3/31/2012 - 7:41pm
Replies by: jolainajo

I'm not sure what the protocol is on this board for such a request but my husband needs to talk to someone who can relate to what he is going through.  He is a 43 father of two and at stage IV and just had his first infusion of Yervoy.  In short, just someone who feels like talking to him about their experiences and offer some hope.

If you can, please email me bblapril@yahoo.com and we can go from there.

Thank you so much!

Be a fountain not a drain

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MeNDave's picture
Replies 8
Last reply 3/31/2012 - 2:12pm
Replies by: LindyVA, Jim M., Anonymous, Rocco, Gene_S, jmmm, jim Breitfeller

Given the rate of growth of Dave's cancer in the past 6 weeks, he is leaning towards starting Yervoy Wednesday.  We have been in contact with Univ of Pitt regarding the MK-3475 trial.  The trial nurse (who was wonderful) said that only 1 seat was open on the current trial, and that was for a post IPI patient.  They did receive FDA approval for expanding the trial, so seats will be opening up for both post and pre-treated IPI patients at all of their investigational sites, but she is not sure when, and we don't have time to wait.  Given Dave's reaction to the IL-2 with the eye problem, I'm not even sure that he would qualify.  However, if he completes IPI and progresses (and has no eye issues) we can always try to get in then.  We've also brought up the issue of radiation with IPI, and his oncologist agreed that if he wasn't responding, he would do it.  Memorial/Sloan Kettering wouldn't even consider Dave because we aren't within 2 hours of the hospital, unless it is coordinated with his onc.  And given the 4 week washout period, we just don't want to wait that long.

In the mean time, if I could get some of you to share your success stories with IPI that I could pass on to Dave I would appreciate it.  He is very worried about this next stage of treatment, and I would like to reassure him that people DO respond to this.

I am trying to keep his attitiude positive, and need all the ammunition I can get - thanks to all of you for your help,

 

Maria

Don't ever, EVER, give up!

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deardad's picture
Replies 9
Last reply 3/31/2012 - 12:16am

Hi everyone,

Well we got my dads scan results today and it looks like after nearly 7 months Vemurafenib is loosing effectiveness.

Scans showed 1 x mm increases in the spleen, large lung tumor gone, 4 x liver tumors stable, sub fat x 3 increased by a few mm's. Nothing over 15mm as yet.

One new growth 10mm in the fat near buttock but hasn't been positively confirmed but I have no doubt that it's Melanoma.

Well we all cried and still feel really sick in the stomach after the trials nurse tells me we need to act quick as the decline can be rapid. Great....

So dad's oncologist has recommended via the nurse (he is overseas) that dad stay on Vemurafenib until he can get into Roches Vemurafenib/MEK combo (should be within a month). Really scared that maybe the MRI won't be good then what do we do? Hopefully that wont be the case. They don't like you asking many questions, re: treatments, I asked about ANTIPD1 and they don't know much about it but don't believe its running in Australia. Anyone here is AUS that knows whether that's the case? 

When I asked what plan C is if MEK fails the oncologist said "I can't read the future......" that was very unnerving as well. 

Any suggestions? Anyone doing well after failing MEK?

Nahmi

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H555's picture
Replies 5
Last reply 3/30/2012 - 7:23pm
Replies by: H555, LynnLuc, Richard_K, cltml, Linny

I started coming to this board last June when I was diagnosed with a lymphnode recurrence from a melanoma removed in 1995. i had 17 lymph nodes removed only1 was malignant but there was capsular penetration (I think that's what it was called). I had the first 10 days of Interferon infusion in november that beat me up pretty bad and my oncologist and i both agreed to stop. I also have recurrent prostate cancer related to Agent Orange exposures and residuals from radiation treatment for that.

Fast forward to yesterday - for about a week I've had a dry cough that felt different than any cough i've had so i called my PC and he referred me for a chest xray and wet read. about 4 yesterday afteroon he called me at the clinic and told me I had multiple masses and nodules in my lungs and set me up for an appt with my medical oncologist tomorrow at 9 am. i can tell the cancer has grown in the last week, i can' take a full breath and hold it without coughing. i suspect that multiple masses and nodules is not the same as scan identified mets so i'm more than a little worried. i've searched the posts here for folks who've posted about lung mets and treatments and would love to hear more about what's worked. I know I'm now beyond the "found it in a lymph node stage" but i see many stage IV folks here who are faring well. My hope, frankly, is for a few more good years. we've been planning a trip to Kenya this summer where our son is in the Peace Corps, and I desperately want to make that trip and i'd like to live long enough to be here when he returns in 18 months. . we have 2 young grandchildren 2 1/2 and 6 months and i'd like to see a lot more of them. and I've been retired for 9 months in hopes of racing a 65 Barracuda my youngest son and I started working on 7 years ago. so i'm praying and staying positive and scared sh#*less right now. thank you.

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/30/2012 - 1:56pm
Replies by: Ali, Anonymous, Gene_S, James from Sydney

First time posting , but I have been lurking on this board for months.  My father, 80,  was diagnosed with Stage 4 metastatic melanoma in Sept 2011.   There were large masses in his chest and abdomen.  His first treatment option was radiation therapy to shrink the tumor in his chest.  He also tested BRAF+ and started Zelboraf .  However after only 1 week into his Zelboraf treatment, he was hospitalized for pneumonia / radiation pneumonitis.  They actually were not certain which one it was, so treated both.  In December, he started his Zelboraf -- full dose, twice a day.  His 6 week scan showed a great response with no new tumor growth and shrinkage of 40%.  In March, he had his second scan, and the Zelboraf stopped working and his masses has increased in size.

His oncologist says there are two treatment options:  Yervoy or Abraxine.  She recommends Abraxine because of her concerns about the toxitity of Yervoy and my father's ability to withstand treatment.  Everything I have read suggests the Yervoy to be more effective; however I am concerned about the time it takes to be effective, so perhaps the Abraxine would buy some more time.

I am interested in hearing any experience in this decision.

Thanks,

Bill

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Ali's picture
Replies 15
Last reply 3/30/2012 - 1:51pm

Just wanted to check in and update the progress we are making with IL-2.  The scans after my first cycle (one week at the hospital, one home to recover, another at the hospital) showed shrinkage and stable disease.  All the tumors in by breasts that I could easily feel with my fingers (and were determined to indeed be melanoma with a needle aspiration biopsy) melted away during my stay at the hospital the second week.  The liver tumors have not grown.  The ones in my bones were radiated right before IL-2, and look like dead tumor to the Dr.  We are pretty thrilled about all this!  I am curious to know what other responder's experiences have been.  They are not calling me a partial responder yet, just stable disease.  I know the liver is a hard one to get to, but there are complete responders who have had liver mets, yes?

I am not going to lie, the weeks at the hospital are pretty bad.  I have done three weeks now and each one has had its own kind of torture.  The first week was fatigue, high fevers, chills, nausea.  I don't remember much at all about that week.  The second week was blood pressure issues, and rigors (body chills) that were hard to get rid of.  And a long recovery when I got home.  The third week I was just sick as a dog, throwing up every time I got out of bed.  It was my easiest recovery though. 

Every week included flu like symptoms.  I have not had the bowel issues I read about.  I gain 20 lbs of water by the end of each week, which wouldn't be so bad if I didn't have lympedema in my leg.  The water loves to hang out there for a few days.  Not fun.  I feel like I would do anything to beat this, and IL-2 seems to match my intensity. 

Good luck to all in this battle!  I think of you often and thank you for the support and hope you have given to those of us new at the stage IV thing.

Ali

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bruski1959's picture
Replies 1
Last reply 3/30/2012 - 12:47pm
Replies by: audgator

Jackie had her 3rd Yervoy dose on Monday, March 26th, originally scheduled for Friday, March 16th, but she was having intestinal side effects which needed to be treated. Wednesday morning Jackie starting having intenstinal discomfort that tylenol didn't touch, anti-emetics helped, but also needed something stronger for pain relief. Early this morning, Jackie started having intestinal side effects which she was able to treat with Immodium. So back on clear liquids and high dose steroids. She is doing better this afternoon and this evening.  Hoping the side effects won't be as bad they were after Yevoy dose 2 which required to 6 hour visits to the ER for rehydration. Jackie has been resting a lot this and has almost no energy from the extreme fatigue.  Praying that she will be able to continue to cope with the side effects and side effects treatment so she can have Yervoy dose 4 on or after April 16th. Stay tuned. Appreciate your encouragement, prayers, and support!

Thanks,
Bruce and Jackie 

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Lisa13's picture
Replies 4
Last reply 3/30/2012 - 8:59am
Replies by: Lisa13, KRob, lhaley

Last November, I had gamma knife on a 2.5cm brain mets.   In the last 2 weeks, I've had definate symptoms that are part of the edama.  I sometimes forget words briefly and my eyesite in one eye is a little weirds.  I have a brain mri in 2 weeks which will be 2 months after my last gamma knife. What symtoms of edema have you experienced?  What can you do in regards to edema? Linda - I know how muc you know about this stuff :)

Lisa

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

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