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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Amy Busby's picture
Replies 12
Last reply 1/31/2011 - 11:31pm

Hi all!   Sorry I have not been around much lately.  I see so many (relatively) new people and hate that I haven't been able to share my vast storehouse of melanoma info, lol.  I have been around the block more than a few times.  Now I have failed ipi too.  I decided to first take steps to ease my HIGH pain level and strengthen my hip / femur on the left.  I had good success with the radiation on the right side, so that's what we're doing on the left now.  Lots of fatigue, so not online much lately.

Had a slot lined up for E7080 but who knows if it will be gone in 38 days?  I'd bet that it is.  So I'll be beating the bushes once again hoping a viable treatment option shakes out once I'm done w/ my 10 day course of radiation and passed a 28 day washout.  But first my priority is NOT breaking my hip.  So lots of sitting & people pushing me back & forth to the restroom in my wheelchair.  grrrrrrrr

Anyone with contact info on trial options send them to me at amybusby@sbcglobal.net.  I'm looking for targeted therapy but often brushed off b/c of prior BRAF study.experience & leptomeningial mets.  But my brain is stable for awhile.

Love and Encouragement to you all,

Amy

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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MaryMary73's picture
Replies 2
Last reply 1/30/2011 - 8:52pm

I found a fantastic article online which features research from dermatologist Dr. Marcia Driscoll, clinical associate professor of dermatology at the University of Maryland School of Medicine in Baltimore.

http://www.sciencedaily.com/releases/2009/05/090504210204.htm

The only real wisdom is knowing you know nothing -Socrates

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deirgey's picture
Replies 5
Last reply 2/1/2011 - 12:18am
Replies by: deirgey, Anonymous, LynnLuc, skysar, lhaley

Just wondering if anybody knows what MDA tests for with the pathology slides you send them for a second opinion?  My dad is stage IV and didn't have to send pathology slides to the other 2nd opinion he got at the Angeles Clinic.  Thanks in advance :)

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Met with radiologist and neurosurgeon today.  Some of ya'll with experience may can help me solve this delima, as I think Drs. will respect my wishes:

1) A 1mm slice MRI will be done Tuesday to see if any more smaller spots shows up-he suspects it's highly possible.

2) Dr. says if multiple smaller spots DO show up, then I may want to do WBR (whole brain Rad.) 1st to shrink/retard/kill? ALL the smaller spots while bigger spots can be held at bay-  then do cyber-knife on bigger spots 3-4 wks. from then.

3) My concern is the fear that if I don't go ahead and get the 5 mm (plus or minus) two spots on each side of Basal Ganglia and the 4 mm spot on Thalamus, that they COULD? grow during WBR and IF they did they cannot be surgically removed IF they got too big for even cyber-knife to erradicate.

4) Either way I'll be doing both proceedures.  Just trying to weigh odds of which to do 1st.

5)  am I making any sense?  Bottom line:  Have any of you been faced with this delima?  Regaurdless, what would you do?  Just looking for direction from those with any similar experience.

Thanks for ANY input, I'll take all i can get!

PS. did like and feel in good hands with my Drs. at Baptist Memorial in JAX, FL.  Dr. Olson-Radiologist/former NIH researcher, and Dr. Chandler, neurosurgeon.  Both seemed very well versed in melanoma brain mets., however, i've come to a point to trust my own instincts combined with real life experiences of others.  My gut tells me to zap out the bigger and/or inaccesible mets first via cyber-knife, then worry about any smaller spots with WBR, even if 20 under 2 mm spots are found and my grow some while waiting 3 wks. btwn. cyber-knife and WBR. 

Please give me your opinion; if i'm making any sense, that is!

Thanks again & Love to ALL- Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Bombeni's picture
Replies 7
Last reply 2/24/2011 - 10:49am
Replies by: Bombeni, Janner, 2atlascedars, Anonymous, KatyWI

Hi everyone.  I had a sore develop on my neck around Thanksgiving.  I have never had any moles, and for a couple of weeks I figured it was a bug bite.  It is about half the size of eraser, blackish but when I wash sometimes the surface sloughs off and it is red and bleeding.  Oh, early last Fall I lost 25 pounds in a matter of a couple of weeks, having weighed the same thing for 20 years. 

I am a computer dodo.  I have a camera phone and took a picture of this thing.  I wish I knew how to send the picture for others to look at.  I did see a derm. and he is going to excise a very large area on Feb. 7,  I fully expected for him to do a simple biopsy the day I was in his office TWO WEEKS AGO, ERRRR.   But he only works part time now and first appt was Feb. 7 to excise this.  He drew the size and shape of a  human eye which he is planning to take out.  Now, doesn't that seem like a somewhat radical thing, taking that much area and of course will have a scar (he said 6 stitches) before he knows for sure if it is cancer?  I know he is one of the most respected derms in Tulsa, but does anyone feel I should go somewhere else to have a simple punch or shave (I've been studying) biopsy first?  Thank you for any replies.

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lhaley's picture
Replies 6
Last reply 1/30/2011 - 10:00am

I go to a melanoma specialist and a local oncologist. Last visit to Charlotte the PET/CT scan showed a slow growing nodule on the lung. I go in 2 weeks to have another PET/CT.  Meanwhile I went yesterday to my local oncologist. She did blood work and just called.  My liver functions are off.  The ALT is 178. In Nov. it was 40.  The Alkaline Phos. was 140 - she said that was high also, did not catch what it was in Nov. 

I am on Zocor 80mg for cholesteral, she said that could be why, but then why wouldn't it have been high in Nov!!!   I've actually been off for 2 weeks because I also have mastitis and have been on 2 different courses of antibiotics. Erithromycin 1600 mg a day, and then the z-pack. Zocor and Erithromycin do not work well together. No one warned me at first so for about 6 days I was on them together.  I'm allergic to most antibiotics so that was why those were chosen - they didn't work and am being referred to an infectious disease Dr.    Could the antibiotics cause the high numbers??

She is having me come back next week to redo the bloodwork. She never calls, always has her nurse call so I know this is not normal.

Can anyone give me some insight?  I had been able to keep my anxiety in check for the next PET but it's off the charts right now!

Linda

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bball's picture
Replies 2
Last reply 1/31/2011 - 9:42am
Replies by: bball, triciad

I have ruled out 1yr interferon treatment. However,when i look at some of the trials like Rusciani it seems worthwhile to at least try it for 30 days to extend chances of DFS.(or has this study been shown not to be valid). Any experiances or opinions would be greatly appreciated.

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Jaime.30's picture
Replies 2
Last reply 1/30/2011 - 1:03am
Replies by: Jaime.30, lhaley

Hi!  I just wanted to post a little update and say thank you for all of you who offered a kind word during my freak out posts last month.  My husband Eston is doing great.  After a few CT scans on his neck and a follow up MRI on his brain there is no sign of Melanoma still.  It has been a busy stressful almost 2 years but we NEVER take forgranted how lucky and blessed we are that he is NED and that the crainotomy found no melanoma.  He is back to work and we are trying as hard as we can to just live life.  Sadly Eston's father passed away from a heart attack a month ago but we were very touched that his mother decided to list MRF in the obituary to send donations to.  Eston's dad would want a cure for his son and for others fighting this cancer.  We know of at least 3 donations made and this means the world to us!!  Every little bit helps.

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LynnLuc's picture
Replies 4
Last reply 1/28/2011 - 4:14pm

About Linda S in Florida (stage 4 melanoma). My best buddy! Linda had surgery today at Moffitt.They were planning on removing a 5 inch area which was thought to be infection or melanoma..Surgery over-doing fine considering...she has her happy pump which keeps her sleeping.
 

-growth in intestine was larger than expected...took out 1/2 of large intestines...cancer was everywhere...all of ascending is gone and 1/2 of transverse...that is 3/4 of large intestines. Melanoma was size of grapefruit that they removed...
They couldn't remove it all because it is wrapped around the intestine and major arteries...will do trial after she recovers using her melanoma cells...
They were also hoping to tray and remove  two around her stomach in a fatty layer since they were in there but couldn't...too close to major vessels...

The one in her lungs remains about size of golf ball ( was size of grapefruit) and one remains under her arm...she managed to stage on the YM-155-docetaxel-longer then anyone on the trial...11 cycles. She has Rheumatoid Arthritis ( an auto immune disease) which keeps her from doing any immunotherapy! pray for her please...

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glewis923's picture
Replies 8
Last reply 1/29/2011 - 8:50am

Had MRI this AM.  at 2;00 my dr. called for "family" mtg.  have 2 five mm tumors on back lft.., 1 smaller in Thalamus, another in Ganglion area.  This sux, but i've been bracing myself for progression.  

Question:  All cyber- knife/stereostatic veterans:  did any of you have this many zapped away- in these diverse places,  AND did it "kill" them or did more simply appear?   Will find out tomorrow my options on ciber-knife and WBR (whole brain radiation)....BUT....I've come to the conclusion that many of you can give me better and straighter answers than many of the Drs' can-  so your input is valued.

Thanks and Love ALL-  Grady & Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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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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