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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alicia's picture
Replies 3
Last reply 12/10/2011 - 11:21pm
Replies by: deardad, jmmm

Hi friends, My friend i posted about early who is Braf positive just started zelboraf today.  He has a pretty high tumor burden with liver, spleen, lung and bone mets.  Is there anyone out there with similar situation on zelboraf and whats you info or advice you would give someone else on this drug.  what are the most common side affects, how long does it take to work, how often are you scanned to check for response? How long do you take the drug and can they increase the pills from more than 2 pills a day?  I truely appreciate your knowlege, experience, and advice.  Thanks so much!!!!

 

Much love,

Alicia stage 3 with mult primary tumors

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acyr's picture
Replies 17
Last reply 12/14/2011 - 7:11pm

Hello everyone,

I just received a call from Val's husband in Montreal to let us know tha Val passed away yesterday.  I am so very sadened by this news.  I had been in touch with Val for the last 4 years - she was just a wonderful and giving person - so full of life and enjoying her family and grandchild.  She was truly beautiful inside and out.  She never really got a break from this disease, but I never heard her complain or become bitter by her situation.  She kept fighting until the very last.  Most recently she had been on the TIL trial at NCI - she spoke very highly of the doctors and care staff!  She valued so much the support and community that she found here on this website.  I know she will be looking up our friend Sharyn in a better place and they will be able to enjoy each other's company with out pain or worry of disease.

Raise a glass or say a prayer in her honour - it was was truly an privelege to know her.

Annette

Chair, Melanoma Network of Canada

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mommydog's picture
Replies 3
Last reply 12/10/2011 - 7:03pm
Replies by: Richard_K, ipi in DC

My husband has been in the GSK BRAF/MEK randomized trial for 9 months now.  His last PET scan showed no evidence of disease.  I know that BRAF is not a permanent solution, but does anyone yet know about the long term prospects with the BRAF/MEK combo?  According to the oncologist my husband and one other trial participant out of the 14 in this trial had the most dramatic responses to the drugs.

I am thrilled, but keep waiting for the other shoe to drop.

Deborah

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Wetterhorn's picture
Replies 5
Last reply 12/10/2011 - 2:11pm

So, the last several months have been pretty crazy given the number of symptoms I've had post Yervoy treatment. Just a quick update here. For the past 2 months I have had a good amount of nausea and an overall feeling of lethargy. I finished 3 rounds of Yervoy in late August as the first symptoms began manifesting. The docs finally prescribed a brain MRI (2nd in 2 months) due to nausea, but it was clean. In celebration of this, I drank 2 beers the night before thanksgiving and woke in the middle of the night with pretty bad nausea. Thinking my liver met was getting quite a bit worse, my wife and I still decided to go our trip to Costa Rica for 11 days. For the most part, all was well, minus a bit of lethargy and mild nausea. I did avoid alcohol while I was down there. On Wednesday this week, had a CT scan, which was a 2 month follow up from last scan. Results yesterday were great as the lesion could not be found on the Liver. I am not ready to call myself NED, and those words were not used at all in my appt, but i'm pretty happy with the results.

Has anyone else had long lasting nausea after Yervoy? Just curious.

thanks

Wetterhorn

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BarbieGirl's picture
Replies 18
Last reply 12/19/2011 - 11:03pm

I don't come here much anymore, but for about 9 years, I was here every day.   I'm (still) raising 3 grandgirlies, and my mom has been here a while, too!  

My original surgery was in Oct--diagnosed on my 39th birthday.  The surgery I had 11 years ago still showed melanoma, so my NED date is today!  I am so blessed that I found this place, which was then called Melanoma Patients Information Page.   The information and support from here is incredible, and I'm blessed to have been able to meet many people, in real life and online, from this bulletin board!  Sadly, many are now angels.  But many more, from 11 years ago and beyond, to today, are not only still alive, but thriving!!  (Hey old-timers, give a shout-out!!) As NIcky said below (and is also celebrating 11 yrs. NED today), there is ALWAYS HOPE!!

I love you all and wish you and yours the most wonderful Christmas of all!  And Happy New Year!!!!! 

*hugz*

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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remjgg38's picture
Replies 2
Last reply 12/9/2011 - 9:36pm
Replies by: Janner, lhaley

I was diagnosed in 1984 with a stage IV melanoma on my back and had it excised.  Then again in 1991 another showed up and I had it excised.  There were no other occurrences until April 2011 when I noticed a lump in my left armpit.  I realize that this is an incredibly long time for melanoma to remain dormant but my doctor said that it has been known to do this.  They did a biopsy on it and it was a stage 4 melanoma so they did surgery and removed most of the lymph nodes in that area.  Pet scans have shown that there are other spots in this area now and my doctor wants to put me on Zelboraf.  Has anyone else had anything like this, and I am wondering about the effectiveness of this new drug.  Thanks.

All things are possible for those that believe.

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Nicky's picture
Replies 8
Last reply 12/9/2011 - 9:18pm

Hi everyone, it is so good to be posting another anniversary.

The people on this board have inspired me for many years and I thank everyone so much for the posts that have been an amazing support, mpip is a great community 

It has been my mission to raise awareness for melanoma through tv and radio supporting cancer research and my local hospital. I know that some of my friends here, neighbours, family and colleagues who have lost their battle with this disease no longer have a voice but I still do and I will continue to help beat this disease in anyway I can until my last breath!!! (hopefully when I'm an old lady).

Whatever you are going through personally here, keep fighting and never give up hope. 

LOL Nicky (my patnet is under Nicky)

 

 

 

 

 

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laurieformike's picture
Replies 9
Last reply 12/9/2011 - 11:50am

Husband got bad news from the MRI, new mets. The Gamaknife was 4months ago, they want to do WBR starting next week. So afraid of out come, with the side effects and all. Was looking to see if anyone had experences with the WBR? Also was reading about somepeople on the Board here have had good results with Yevoy with brain mets, and would it be option since he has had to reduce dose on Zelboraf twice now? So need to be able to discuss with someone, he is so depresed now. He was feeling so much better after reducing the dose on the Zelboraf but still having bad joint pain!

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So, I did work around the system today and had a doctor at my radiation appointment give me my scan results. There is tumor activity in my groin (where I can feel an obvious lump) and also in my armpit on that same side. This is the first cancer activity not involving my back or groin lymph nodes. I don't like the idea that it's moving, but I'm relieved to hear that my brain and lungs and other organs were clear. I can deal with more lymph node involvement, right? 

I see my oncologist tomorrow, so we'll see what the plan from here is. 4 days left of radiation!

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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marfda's picture
Replies 2
Last reply 12/8/2011 - 8:43am
Replies by: Phil S, lhaley

I'm curious what you all do and what our rights are to our scan result information? I had a PET scan yesterday and the results are available to my onc by the end of that day. But, the onc's nurse called today to set up my appointment and she isn't allowed to give me the results. I have to see the doctor tomorrow afternoon. It makes me nuts that I have to wait to talk to the doctor. It sends my anxiety sky high and emotionally, I do better if I have an idea of what the scan showed and can deal with that privately before talking to the doctor.

I went around the system today and asked the rad onc to give me results while at my radiation appointment today (the results are online for doctors affiliated with the hospital.) So, I got around the system today, but I know if I had not had my results and the nurse had called to tell me nothing, I would be having a crazy anxiety attack.  It also feels like we as patients are treated as infants in this system. Like we can only handle having a doctor to deliver the news to us.

PS I do understand that the results can be hard to read and interpert and people might freak out. But, in my case, I am informed and want to advocate for myself! 

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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Karolina's picture
Replies 10
Last reply 12/9/2011 - 7:59pm
Replies by: Janner, Karolina, lhaley

Sorry for asking, again, silly question, but due to the lack of clarity from the doctor, i am trying to find out as much information as possible from this forum. And as so far, I wasn’t disappointed. Thank you

Now I am trying to find out whether negative result of SNB means that this cancer COULD NOT spread elsewhere? Or, is it possible that SNB is negative but cells could spread somewhere in the body via different way? Bear in mind that I am still talking about Desmoplastic melanoma, which I understand may behave different to other melanomas…

I am a bit concerned as my friend had 3 operations already, at the moment she has an opened wound as the doctor wants to make sure that there are no more cancer cells after last (3rd operation).  However, I wonder whether this cancer could spread elsewhere if, in fact, it is on my friend’s skin for at least last 5 months! If SNB is negative, does it mean that the cancer CAN NOT spread elsewhere by other means? To date my friend had no other treatment done i.e. CT or blood test. Is it also a standard procedure and is not required?

Please advise

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lhaley's picture
Replies 15
Last reply 12/7/2011 - 6:15pm

I am so thankful.  Original brain tumor (21mm) was found Oct 4th that was showing symptoms.  SRS done Oct 17th and was told that there was approx 1cm bleeding at the time.   EMR Oct 30th due to severe headaches but told stable.

Today's MRI was good!  There has been shrinkage of 20% and it shows nucrosis spaced through out the tumor.  Has not bleed again since the first time and is slowly being absorbed.  Both the radiologist and melanoma specialist both were so excited and had only smiling.  They feel that all of the issues I've been having are steroid symptoms.  Now we are finishing weaning.  They have slowly been weaning me off and should take about another week or so. 

Every joint has caused problems but they have told me if I do have some headaches that I'm not to worry.  Sometimes it does happen. If they're bad then I call back.  Meanwhile next PET scan is the first week of Jan.  

Linda

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renter9's picture
Replies 3
Last reply 12/9/2011 - 3:17am

Person in that area had a shave biopsy with a melanoma diagnosis.  Derm wants him to return in 2 days to have the entire mole removed. Do not know the name of the MD, but would like some suggestions for a reputable clinic or specific MD.

Thanks, 6 year survivor

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KellieSue's picture
Replies 7
Last reply 12/9/2011 - 9:22pm

Hello all. Thank you very much for the advice earlier on my braun tumor. I am about 20 days out and feeling much better. I finished the brain radiation and weaning off of steroids. PET and MRI look good so for now we will continue on.
I am getting better everyday wirh my stroke. It's a conscious decision to pay attention to the right side even tho I can't feel it. I have great OT and PT making me stronger everyday.
I will be starting a clinical trial with Temodar starting next Monday. Now if we can just keep the brain clean we will be good. I'm feeling positive and hoping to get back to kicking cancers ass.
Thank you all for the thoughts.

Kellie(from Iowa) fighting my way back from a stroke. I will beat this. I will. Cancer can kiss my ass

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

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Laurie from maine's picture
Replies 9
Last reply 12/7/2011 - 11:01am

Just came from doctor with scan results from 4 months on zelboraf.  Liver tumor continues to decrease, lungs have stayed same.  But intestines now have two big tumors wrapping around them growing quickly. :(   I go tonite for MRI and thurs for PET scan.  Plan as of now is surgery asap to remove two intestinal tumors, meanwhile staying on zelboraf until surgery (dr is checking on whether to stay on or not) and then figure out what plan I go with from there.  I am going to be hopeful/optimistic as I sailed thru the last intestinal surgery and was out of hospital in 4 days and walking around fine.  Doctor said sometimes each area of the body reacts differently to the drugs, and he is hoping that the stomach/intestine is only area that didnt react to Zelboraf. But guessing he is also thinking if I am strong enough after surgery we go to ippi or interleukin?    I am guessing plans might change depending on mri and pet results

wish me luck - keeping strong thoughts and staying strong not going to let this knock me down.

laurie from maine. 

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