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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adgesoph's picture
Replies 4
Last reply 2/8/2011 - 7:20pm

My dad has stage 1V melanoma (braf positive), just finished up 2 rounds of Interleukin-2 and it didn't work (no real surprise there) so now his doctor is looking into either ipi or PLX4032.  Which one is best?  Pros and Cons?  What would you do if you were in his shoes?   I want to help my dad anyway I can and need to know the ins and outs of all this stuff so we can make the best choice.  Please help!  Thank you!

 

Adrienne

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Replies by: Anonymous

Hi there everyone,

Ive just started taking PLX4032 (4 days ago) as part of the BRIM 3 Trial.  When I first went on this trial back in July, I was randomized to recieve treatment with Dacarbazine (DTIC) , which didnt help me at all. I recieved it for about 5 rounds, when we discovered that my disease was progressing.  Then for a few months I went untreated, while I tried to sign up to other trials (focusing on the V600E BRAF Mutation), only to be knocked back for not meeting criteria by the slimmest of margins.  I then went on to the compassionate use of IPI, with no success either.

So, Im finally getting the treatment that I've so desperately been waiting for, and I am positive that it is going to be the one that is going to work for me.  I just know it, and have faith in its ability to put my disease in the rubbish bin, where it belongs!!  I do know a lot about this pill, its tendency to only work for a certain amount of time, etc, but with this disease, I am living for today. and if I can go through months of 'todays' in remission, without having to worry about this horrible disease then I would be so thankful and happy.  Then when and if a bad 'today' happpens in the future, then I must find and have faith in another treatment......  but for now, I live for TODAY! :-)

So, what I would like to know about is other patients experiences on this pill? 

Did you get any initial side effects when you first started taking it? & did they pass? 

How soon did you see a response?  & what to look for, in regards to it working or not?

How well did it work for you? 

What have been the worst side effects of this drug overall? 

If it worked for you, how long did it keep melanoma at bay?

If it worked for you initially but then stopped, what road did you travel down next?

I'd really appreciate it if some of you wonderfully caring, strong, inspirational people out there would share your experiences and knowledge with me.  Because although Ive read a lot of info on the net, its still 'text book' information as far as I'm concerned.  Its based on statistics and the typical experience.  Im NOT a statistic and neither are any of you!  Im an individual and would like to find out other individuals personal stories and real life experiences.

Thanking you all in advance and sending you all much love and light to guide each of  you out there in MPIP Land on this extremely cruel, lousy and bloody rough journey we're all on.....

love Simmy from Oz   xoxo

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annaoc's picture
Replies 6
Last reply 1/28/2011 - 10:06am

Don't post often, but when I was in the thick of diagnosis, surgery, etc. I went on the bulletin board A LOT to read success stories. Hoping this gives at least one person a little hope! Clear scans; NED and I are still happily together!

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Thinking about you and praying for peace for you.  I know  how you feel as I am going down the same journey.  It's hard.

Take Care,

Sherron, wife to Jim FOREVER

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bball's picture
Replies 2
Last reply 1/26/2011 - 11:03pm
Replies by: bball, Janner

I had 3.4mm removed from my cheeck in oct. sentinal node and ct/pet were negative. (no ulceration by mitotic rate was 6). My main onc.has me just doing follow ups but no treatment. second onc basically the same but can get me into 30 day interferon treatment. currently I have been following an immune style diet lots of greens no dairy,wheat and limited sugar. ANY THOUGHTS

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jenniperry's picture
Replies 15
Last reply 3/7/2011 - 5:41pm

Haven't posted in awhile. Brian went in for IL2 Dec.14th due to no trial openings of other treatments. While having IL2 they did an MRI since one of his eyes wasn't responding to light correctly. They then told us he has leptomeningeal disease, and his liver was very enlarged and his abdomen was distended from fluid. We were in the hospital until Dec. 21st and went home with the words, he has a few weeks.... We are devastated. He has declined in the five weeks since and now vomits a lot and his liver is failing. The doctor said they couldn't do whole brain radiation because it would just torture him and then the liver would kill him. He's lost about 15 lbs, some he has gained in fluid, so it's more weight than the 15lbs most likely. Hospice has been coming twice a week. He sleeps most of the day and is awake anywhere from 5 to 7hours, a lot of which he feels really bad. Pain meds are working better now. We are just trying to keep him comfortable and say all we can while there is still time. He is only 41 and is so sad to leave as we are to lose him. We do trust he is safe in the hands of God, as are we. Still praying for a miracle.

Cherish every day you have.

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Sharyn's picture
Replies 8
Last reply 1/29/2011 - 12:18pm

 

Hi friends!
Just a quick update. I went to Montreal yesterday and met with my oncologist Dr Mihalcioiu and radiation oncologist Dr Roberge. They went over my Dec 8 brain CT scan in great detail, and here's how things are looking.
 
Back in May I had 4 brain tumors treated with Stereotactic Radiosurgery (SRS). I'm delighted to say that 3 of them are gone, and what's left of the 4th one isn't even worth bothering with. But (there's always gotta be a "but"), I have 2 new tumors. One is on my left occipital lobe (I had one on the right side in May), and that affects vision. Lately I have been having mild loss of peripheral vision on the right side (left controls right side of the brain), so that explains my sight problems. The other tumor is in the internal capsule, and (I think) can affect arm and/or leg movement, although I haven't had any of those symptoms. Dr Roberge thinks these 2 new tumors could possibly have been present when I had my last SRS treatment, but were still too small to be detected. So this doesn't necessarily mean new growth.
 
So here's the game plan: I go myself back to Montreal on Tuesday (Feb 1) to check my radiation mask to see if it still fits. Remember, I had no hair last year, so the new hair may have thrown the measurements out of whack. If it doesn't fit, I have to get one made Tues morning. Then I go for an MRI, after which is a planning session to figure out lines and angles, etc. Back home Tues night.  Back to Montreal again, with Jim this time, the following Monday (Feb 7 & 8) for the actual treatment. It would have been nice to do it all in the one trip, but a lot has to be done from the 1st to the 7th, co-ordinating physicists, figuring out radiation dosages, etc.
 
Then I resume the next phase of ipilimumab, which, by the way, the doctors are absolutely thrilled with! They can't believe the drastic reduction in other parts of my body. They'll do another CT scan before we start up again to see what my new starting points are.  
 
So that's it -- just another little bump in the road. I'll let you know how it goes after the 8th.
 
Hugs
Sharyn

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Jan in OC's picture
Replies 13
Last reply 1/29/2011 - 12:35pm

During the scans to qualify for the E-7080 trial, the Dr discovered several brain mets. Husband has been on no treatment since failing BRAF on 12/20/10 in preparation for another trial.  Cancer has been growing like crazy!  We are both a little upset by this news.

We go in this afternoon to discuss other options with him, but I don't know anything about the treatment options once mel is in the brain.  Any help or advice would be appreciated.

Jan, wife to Dirk, stage 4, WLE, 1 mo HD Interferon, BRAF 11months

laughter is the best medicine

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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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Charlie S's picture
Replies 2
Last reply 1/27/2011 - 2:45pm

Hey there Ellen, I was wondering if you have  full access to this clinical article about Immunizations for Cancer Patients that would be a answer to the post  below about this topic.

If so, would you be able to share?

 

http://www.uptodate.com/patients/content/topic.do?topicKey=~pvpQYfr9CgKK9e

Thanks.

Charlie S

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carol b's picture
Replies 5
Last reply 1/25/2011 - 10:36pm
Replies by: carol b, Lori C, nicoli

ok. i have a question. my melanoma tumor under my arm is about 4 inches wide. well yesterday i felt terrible and ran a small fever. the tumor under my arm was just throbbing. i was laying on couch and went to roll over and i herad and felt a "pop". and then it fetl like something inside me was running down into my rib section. today my arm feels so much better. My tumor doesnt hurt near as bad and im able to put my arm down beside my side. my question can a tumor burst? and if it can burst will it cause the cancer to spread even more? i need anserws fast please. im extramly worried. do i need to call vandy and as them? thanks in advance for your answers

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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How soon after starting PLX4032, did you know that it was working?  & how did you know?

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Jenjen's picture
Replies 10
Last reply 1/27/2011 - 10:14pm

Hi everyone,

 

My name is Jen and I am  currently stage 3a  (a couple cells in sentinel node), 2.4 mm, melanoma on foot. I was diagnosed when 26, am now 28 and about 18 months NED, after interferon and LND.  I am now taking classes to try and become a nurse and apply to nursing school in about a year. Some of my oncologists (but not all, they disagree on the subject) have mentioned that getting future vaccinations or immunizations could cause my melanoma to come back.  One of my oncs said he had a stage 2 patient who went 40 years without a recurrence, then had a vaccination to go on safari in europe and it came back stage 4. My oncologists at UCSF , dont agree with this, so i feel like i need some additional opinions or knowledge.

Has anyone heard of this? Or can anyone offer any insight on this subject. To become a nurse you have to get certain vaccinations.( for example: hep b)  I really want to do this but need to know how serious this risk is? And if i have to give up my dream of becoming a nurse.

 

Any advice or knowledge on the subject would be great.

 

Thank you,

 

Jenjen 3a, NED 18 months

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alicia's picture
Replies 15
Last reply 1/30/2011 - 5:35pm

Hello everyone I just got back from Vandy a few days ago and recieved pretty good news from my path results.  There was no evidence of melanoma in my lymph nodes however the melanoma tumor was thicker than previously thought.  there was 2.3mm of residual melanoma on the skin they excised but got clear margins.  I guess one the questions i forgot to ask my dr was do they add the 1mm of melanoma they removed with the biopsy to the 2.3mm to get the total depth or how does that work.  He said this was a thick melanoma and puts me at a stage 2 for this primary.  This is my third primary melanoma BTW:(  The first mel I had 4 yrs ago was 2.3mm at least and spread to one of my lymph nodes.  and then in July of this year I had a thin 0.59mm melanoma clarks level II only treated with wide excision.  I do have another question about my SNB this time.  The first surgeon I was referred to said that since I have already had surgery to my left groin to remove some lymph nodes (due to first mel being on left hip and +SNB Lt groin) that lymphatics had been disrupted and a CLND needed to be done because it would be impossible to find the SN by doing the lymphoschintigraphy or blue dye test.  Well I then get referred to Vandy because my surgeon feels it would be best I see a mel specialist to do my surgery since i'm only 28 yrs old and this is my 3rd primary and the surgery could be complicated since scar tissue in left groin etc etc.  Well the mel surgeon at Vandy says no we will do SNB only and not CLND so day of surgery we do the injection and the nodes light up in both groins so he removed 3 in left groin and 1 in right groin.  While i am so excited that all came back clear of melanoma I still worry at times if he could have missed the true SN as the first surgeon said there is no way of finding it by doing the dye test cause lymphatics have been disrupted.  Sorry to ramble when most of you are dealing with way more serious issues than me.  I just dont know who to talk to about these details and you all have experienced this first hand and truly understand what this feels like.  I go see my oncologist here at home in a couple of weeks.  The mel surgeon said he wouldn't recommend interferon since i've already been there done that but he thought a PET scan needs to be done since I need to be followed as a stage 3 patient and this melanoma was pretty thick.  He also mentioned doing US surveilence of nodes and do FNA if there are any suspicious areas.  Thank you again for your time.

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I live in Alabama. I am currently NED (YAY!!).  I truly don't know if I'm stage III or stage IV because my local oncologist refused to (couldn't?) put an actual stage to my melanoma.

When my melanoma recurred in a lymph node in June 2009 after a 17 year absence, my local "general" oncologist said depending on what criteria you used, it could be staged as either stage III or IV.  He stated that because of the long time period since the 1st occurence, and because we couldn't find a primary, if we treated it as a completely new occurrence, then it would be stage III.  However, if we treated it as a recurrence, because my original melanoma was on the LEFT side, and the recurrence was in the lymph nodes on the RIGHT, it would be stage IV.  Since he couldn't definitevly state which it was, he wasn't willing to stage it.  The PET/CT showed only the one positive melanoma site and treatment proceeded as if it were stage III - surgery (CLND) followed by the year of interferon hell (completed Nov 2010).

ANYWAY, my oncologist says I'm at high risk for recurrence.  I like to be prepared (former Girl Scout).  For that reason, I want to have at least SOME idea of what I want to do should it recur.  Based on what I've read on this site, I know I will need to get myself referred to a melanoma treatment center.  

So, although UAB in Birmingham,AL is listed on this site as a Melanoma Treatment Center, they just don't seem to be as "robust" a center as others - nor are they as well known.  (And I can't necessarily rely on my current oncologist's recommendation because he graduated from UAB!)  If I chose not to use them, I have to be able to defend my choice to my spouse (which should be relatively easy just based on the availability of clinical trials.)

So, if you had to chose:  Would you go to Moffett, MDAnderson, Vanderbilt, or somewhere else?  I very am fortunate that at this time, I have good insurance that will allow me to go almost anywhere.   (I'd like to stay in the southeast, but I would consider the NIH because of the TIL trials, which seem to be a very viable option.)

Thank you!

PS - I don't consider this negative thinking.  I prefer not to be in a panic should the worst should occur.  If I've at least thought about what I want to do, I'll be better prepared to make a decision and better able to discuss all the choices rationally with my husband.  Something VERY important with my VERY logical husband!

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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