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.

Expand/ Collapse Topic
 
Replies By
View Topic
Gene_S's picture
Replies 2
Last reply 1/23/2012 - 8:45pm
Replies by: Judy D, KatyWI

BRAF-1 Inhibitors Accelerate Growth of Cutaneous Non-Melanoma Tumors

This subject was on my local news... I am not sure of what to make of it, ie. melanoma being featured on my local news?

Maybe times are really changing? Did some research and would suggest checking out the following link for more info..

http://search.yahoo.com/search;_ylt=AgW12HnKUUAZKzV.NoAb6WKbvZx4?p=BRAF-1+Inhibitors+Accelerate+Growth+of+Cutaneous+Non-Melanoma+Tumors+&toggle=1&cop=mss&ei=UTF-8&fr=fp-yie8

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Lisa13's picture
Replies 10
Last reply 1/20/2015 - 2:33pm

Exactly 2 months ago, I had my gamma knife. In the past 2 days, I've had a weird headache that doesn't last at all, but I know these type of things can be edema - especially since mine was 2.5cm.  I know it can also be scary thoughts as well, but I want to know what other people have experienced in terms of headache. I know sometimes they are so bad for some people, but I havn't had that yet - just a headache that hurts and then is gone. I have my brain scan next week and hope there isn't anymore.  

There is a woman on this board who had 3 brain mets 5 years ago and is still here kicking ass! There are also 2 other woman here who've had at least 2 and it's been 2 years +. I just have to cling on to this type of hope.

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

Login or register to post replies.

Lilylove414's picture
Replies 9
Last reply 1/21/2012 - 5:07pm

Alrighty! My surgery to remove the rest of my lymph nodes is Thursday, January 26th at 9am! Hoping I don't get lymphidema, but it would be a small price to pay if I do. I get a week of recovery and starting treatment February 6th at 9:30am. Matt posted on facebook for people to shave their heads in support. I said I'm not losing my hair! He said well...let's just see who does it then! Spending time with Matt tonight and looking forward to beating this in the face! God is definitely good! He always provides! Anywho, have a great and blessed weekend everyone! Lots of love!

If God is for us, who can be against us?

Login or register to post replies.

sj541's picture
Replies 17
Last reply 2/22/2012 - 8:27am

Hi - I am new to this board but wanted to share my story to see if there is anyone who could offer any advice/suggestions.  My sister (45) was diagnosed with Stage 3 in 2009, did interferon for a year and scans were coming back clean until August 2011 where a spot on the lung was seen.  She did very well on the interferon, some hair loss and fatigue but was still able to  live life.  She started Yervoy (ipi) in September and finished her last dose in mid November.  The first 2 treatments she did great but around the 3rd one she had developed a pretty severe cough.   Around Thanksgiving she was battling severe exhaustion.  By mid December she was in the hospital getting an IV for nourishment as she was so exhausted she couldn't eat.  By end of December she was back in hospital with pnemonia.  Her scans continue to show growth.  We were really hoping to get her into a clincial trial at Sloane Kettering in NYC for the anti PD 1 trial drug but she's too weak to qualify at this point.  She is now home under the care of hospice and has difficulty eating due to her cough.  We are trying to get her to eat but it's hard. We are still praying the Yervoy drug can help but at this point I just don't know.  End of Jan will be 20 weeks on the Yervoy which is known to take a while to work.  Is there anything else we can be doing for her at this point to help her get her strenght back to continue to fight this...I refuse to give up and have this horrible disease take my sister.

thank you

Stacie

Login or register to post replies.

Thank you to the very kind people here who helped me understand what was going to happen next.

My surgery went well, and I am at home now. 

After learning (thanks Janner) that doing a frozen section on the sentinel wasn't the norm, I found I was up against a brick wall. Apparently in Minnesota, that's how it's done, period. I envy those of you who have melanoma specialists where you live, or the means and type of insurance that allows you to see one.

I had radioactive dye with gamma photos to locate the sentinel (and a probe in surgery), and the frozen section looked good (yay!). Only that lymph node was removed, I will receive the rest of the pathology on it in a week. I will always have the nagging thought that the biopsy should have been done differently, but I will move forward and do everything I can to do to keep on top of this with what I have available here.

The radiologist scared me because he said the sentinel could light up in my neck or the middle of my chest based on the location of my tumor, but thankfully it was in my armpit. I'm glad I didn't know there were other posibilities prior to the surgery. 

Please know that my thoughts and prayers are with those here dealing with so much more; to take the time to write to new people like me is beyond incredible and you have my sincere appreciation and gratitude.

For J3K (Kellie) who received melanoma news the same day as me, I will be with you in spirit during your upcoming surgery.

Persistence (sometimes) Prevails When All Else Fails

Login or register to post replies.

Bobman's picture
Replies 1
Last reply 1/19/2012 - 11:03pm
Replies by: lhaley

Greetings everyone. I just got a call from Kim K., and she just recieved her results from her last scan. NED!  Fantastic news from way out here on the island. She told me she had been trying to post this so everyone could see, and she has tried from several different computers, and has been having problems with the spam blocker alowing her to post. If anyone has info on how she can get around this, she will be able to fill in more details. Suffice it to say though, NED, for a year and a half now I believe she said. Hooray!  Congrats Kim. We are all thrilled at this news for you!

 

Bob

We are one.

Login or register to post replies.

NYKaren's picture
Replies 2
Last reply 1/20/2012 - 4:25pm
Replies by: NYKaren, DonW

hi,

1) I just discovered what I believe is a new satellite, in my ear canal!   Has anyone else experienced this?

 While we wait for some Anti PD-1 trial that I fit the criteria for, Dr. Halpern is freezing all the mel on my face & I'm applying Aldera at night.  They are very concerned about halting the progression of satellites, but held off on the planned Temodar because the Merk trial only allows 2 prior systemic treatments...Now I don't know if this new development will change that. 

Called Dr. Wolchok about ear today, he said it's a matter for Dr. Halpern.  Dr. H. is out of town--I have app't with him for the 30th.  

My next app't w/Wolchok is Feb. 9.

2)  Dr. H made app't  for me w/one of the surgical derm. docs (right after I see him on the 30th.) to discuss injecting IL-2 into the primary and all the satellites.  I don't know anything about this treatment--the side effects of high dose IL-2 were awful and I wound up not responding.   Anyone know about this, and what the side-effects are?  Can't find anything on internet about it.

Last week I was cautiously optimistic because Wolchok said that if Merck would allow calipers to show measurable disease, i might get into that trial, and also that GSK is supposed to start an anti pd-1 trial without the current ipi arm.  Enough people have done ipi unsuccessfully...i think it's time--it's just more money in their pocket if/when their anti-pd-1 drug gets FDA approval.

Any advice/suggestions welcome.

thanks,

karen

Don't Stop Believing

Login or register to post replies.

OB Mike's picture
Replies 8
Last reply 1/21/2012 - 2:28pm

I am getting ready to start my first treatment with ipi. I have a lot of fears and questions, but my primary questions have to do with concurrent use of alternative immune stimulating therapies. Does anyone have experience with Naltroxone, intraveneous vitamin C, oleander extract aka Anvirzel? I am also curious about side effects of ipi, but most seem to say it is easy compared to past therapies?

Login or register to post replies.

DouginVA's picture
Replies 1
Last reply 1/19/2012 - 7:49pm
Replies by: benp

In late December 2010 I was seen by a local dermatologist which promptly removed a rather large oozing lesion from my chest.  Within days the tissue was confirmed as melanoma and I was referred to UVA Medical Center in Charlottesville, Virginia for further evaluation.   Inside of 10 days I was seen by a surgeon who ordered up some blood work and a sentinel node procedure.  The following morning he would perform a wide excision to remove more tissue (increase the margins) and two lymph nodes were also removed from my arm pit.  Within a week I would be told no residual from the tissue and the nodes were negative—GREAT NEWS!  The waiting time and the time spent thinking was very brutal to my emotional wellbeing.

 

By August 2011 I had gotten multiple doctor visits (every 3 months) and all was looking good and I was feeling great.

 

The first week of October 2011 I noticed a “hardness” on my chest.  I contacted UVA with my observation and they wanted to see me ASAP.  Within an hour of being seen it was confirmed that the melanoma had indeed returned.  I was setup for some tests to include a brain MRI, full body CT scan, and various blood tests.  I was advised that you can expect more of the same once we get everything scheduled for you and a return visit to review all the results.  Yes indeed this meant more waiting and lots more thinking--UGHHHH.

 

I was mentally prepared for surgery until the surgeon advised me that they “see” some nodules in my right lung needing further study (more tests…more waiting).  We need to know what these “spots” are before we can proceed with surgery—a thoracic surgeon is brought in to the picture and a single biopsy later it is confirmed that my melanoma had indeed traveled to my right lung.  Yes you got it…lots more waiting and lots more thinking.  How do I tell this to my kids?

 

I now get referred to another doctor within the Oncology department to take a comprehensive “full-body” approach.  You got it…more waiting and more thinking.  Researching this type of cancer is a humbling experience and very much information overload.

 

-------------------------------

 

My new doctor was very much ready to review my history, discussed treatment options, and helped to formulate our plan of action—Interleukin II (IL-2).  We were convinced that keeping the “spot” on my chest was an important part of our plan as it could easily be measured to document progress.  After multiple tests, more tests, and multiple doctor discussions: it was decided (1 day before getting admitted on 2 different occasions) that I was not a good candidate for IL-2.  We re-grouped and now set our sights on Yervoy a.k.a. ipi.  You got it…more waiting and more thinking.  Research at this point is depressing yet I am still trying to remain positive.  Bring on what you got—I’ve been ready to fight this for months!

 

Round 1 of ipi was a 90 minute walk in the park.  The staff was friendly and my family very supportive.  No noted side effects.

 

A great Christmas gift noted after only 18 days from getting Round 1.  The Spot on my chest is measured down in size (17%) in just 17 days (1 3/8” in diameter / down to 1-1/4”)—WOW!

 

Round 2 of ipi goes smooth—hooked it up and put it in.  No side effects noted and I feel very good about the positive progress—seen in days not months.  Doctor is very happy with progress!

 

I am sitting here a little less than a week from Round 3 and the spot on my chest that was once obviously showing through my shirts to being slightly larger than when I first noticed it 14 weeks ago.  Positive thoughts are much easier to come by and I remain very humbled.    

 

------------------------------

 

I continue to hold on to hope and to maintain a positive attitude.  I continue to fight this battle the best way that I can—I rest when it’s time to rest and I try to pay close attention to my body.  Best wishes to my fellow Melanoma Warriors as we poise ourselves to fight this awful disease!

Login or register to post replies.

MeNDave's picture
Replies 4
Last reply 1/24/2012 - 5:45pm
Replies by: CarolA, lhaley, Phil S, samcanada

Since I have not been able to post new topics since the new CAPTCHA, I had to re-register.  Apparently there was something wrong with my original registry.  I had problems since switching over from the old system, so I am starting over.....

I just wanted to let everybody know that Dave had his first set of scans on Temodar at the end of December.  For the first time since June, he is STABLE!!!!!  Nothing has grown.  We were hoping for shrinkage, but considering how much disease spread he had while doing IL-2, he'll take it.  Nausea and fatigue are his constant companions.

He'll continue on the 42 day course of Temodar, and his next set of scans will be in February.

Best wishes to all the warriors/caregivers out there,

Maria (formerly MariaH)

Don't ever, EVER, give up!

Login or register to post replies.

123

Don't ever, EVER, give up!

Login or register to post replies.

Ali's picture
Replies 14
Last reply 2/1/2012 - 5:47pm

I was diagnosed stage IIIB in 2007, did interferon for 9 months.   Last February found 2 subQs, surgical removal and watch and wait.  Scans came back today (my 33rd birthday) showing mets in hip bones, femur,  liver, and a subq in the thigh.

I see my oncologist tomorrow.  I want to be prepared to discuss treatment options.  What trial do we think is having the best response rate?  It seems like I remember (I was on this board a lot a year ago) it was the one at NIH with the T-cell transfer and whole body radiation.  Is this still the case?  What other trials are going on right now with promising results?  I am willing to go anywhere.  I do wonder how long it would take to get started on a trial that is out of state.  I called MD Anderson with my first recurrence and I couldn't even get in for an appointment for 2 weeks.  Is that pretty standard?

Of the mediacations we have available (IPI, IL-2, Zelboraf) what would a young, healthy (well) mother of three (read-desperate for a cure) want to try first?  I know the IPI sometimes takes a long to time to work, so maybe I should start there so I can give it time.  It seems like lots of trials have a requirement that you don't have an auto immune disease, and would the IPI maybe give me one of those and disqualify me for something down the road?   I am strong now, maybe I should do biochemo while feel good?  I do have the braf mutation, but I am thinking that would be the last, unless for some reason I need to shrink the tumors. 

Any thoughts?

Thank you so much.  I am so glad I have somewhere I can talk to people who have been through this and are well read on the latest treatments.

Ali

Login or register to post replies.

lhaley's picture
Replies 5
Last reply 1/20/2012 - 6:47am

I was told about a month or so ago that the tumor was shrinking.  Then edema set in.  Met today with the nuerosurgeon and options are to wait it out on the dex which could take months till the edema gets absorbed.  We agree that I have to get off of these steroids before my immune system is 100% gone.   The issue is the tumor is still there that is deep and the area of speech can be affected.   I've decided that I have to take my chance.   He showed me how there is a cleft to go in through and feels that it will be ok.  If he feels he can't get the entire tumor (after pathology is done again) then they could do a touch up with radiation.

They say that the amount of edema that I have is not common.  That tells them that I have had an excellent reaction to the radiation and that my immune system is still working.  

Date is Feb 3rd.  The other option was Feb 2nd but late in the day.  All I could see was I didn't want to be on GroundHog day.  Kept picturing the movie and it keeps going over and over and over........    Went with the 3rd.

They are trying to get me a little off of the steroids before the surgery. Maybe I can get a little sleep tonight!

Linda

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 1/20/2012 - 9:50am

Hello, I wish I could say it is nice to be here but as I'm sure you all know it isn't. my husband was diagnosed this summer with melanoma and I am just devestated. It all started in the usual way with a mole he has had all his life beginning to itch and make small changes. I told him he needed to get it checked and hopefully removed and that would be that. We left just after that for a family camping holiday and got a call a week later saying they weren't sure what it was and had to send it off for more tests. That scared me alot and I just prayed that they would just call it a strange mole but another week later it came back as melanoma. A WLE and SNB was scheduled for the middle of September and we were told that there was only a 10-25% chance that it had spread to the lymph nodes so I felt quite positive about the results. Unfortunately both nodes they took came back positive. We had to see a different surgeon now in a city 3 hours away to talk about having all the nodes in the groin area removed and that was done in Nov. Thankfully they all came back negative. During this time to say I was a wreck is an understatement, all I could think of was cancer and that my amazing wonderful husband would be leaving me and our 2 boys and we would have to stand by and watch this horrible disease slowly and painfully take him. Slowly I began to regain somewhat of a normal life and thought process, I told myself he will be ok. Then we saw the oncologist and her resident, my husband decided against interferon, the cons of this treatment far outweighed the pros in our opinion, so now he is scheduled for scans and are doing the watch and wait thing. After talking to them I once again feel like we are going to lose him, I dream he find bumps and lumps or we are being told there is something in a scan. my question to all you amazing care givers out there is how do you manage this? You all seem so strong and capable.  I hear so many sad stories, and my deepest darkest fear is that we will be one of those stories soon. I almost feel like I am pre grieving, trying to prepare myself for what will come. 

Login or register to post replies.

cwu's picture
Replies 1
Last reply 1/18/2012 - 7:28pm
Replies by: FormerCaregiver

Hi everyone,

It has been some time since I last posted.  My dad finished his last Yervoy treatment in mid-November. After Thanksgiving, he was hospitalized for 10 days due to what his oncologist think was a severe side effect from Yervoy.  His sodium level dropped and he was weak and confused and didnt know who he was and who we were. his oncologist thinks that Yervoy caused imflammation in a part of his brain which regulates his sodium level. He was given sodium via IV and treated with steroids to reduce the imflammation in his brain.  He was on salt tablets after he was discharged from the hospital and had his salt level followed through bloodwork for a few weeks to make sure it returned to normal. Dad is ok now but it was really scary.

We dont yet know whether Yervoy worked for him, his lesions dont appear to flatten or regress. They dont seem to have gotten bigger either so we are hoping that Yervoy is keepin them at bay.  His oncologist has told us that he can only offer us decarbazine and didnt think dad can qualify for clincial trials due to his age. We have delayed the 16 week scans and will go for the 20 week scans.  At this point, we dont really want to know the results of the scans since there are no more options available. We hope dad's melanoma is not aggressive and we will just wait and see. Dad is still itchy from the Yervoy and still has to take his itchy medication.

Thank you everyone for your support and advice.

Chau

Login or register to post replies.

Pages