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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mzeigler's picture
Replies 1
Last reply 2/24/2011 - 9:19am
Replies by: nickmac56

My wife completed 4 rounds of ipi and had our first scans.  No new mets!  The largest met did not change and the smaller ones looked

slightly larger but not much change.  Now we wait 4 weeks and and repeat scans.  She seems fatigued, and has stiffness and aches

in her joints and muscles.  We can put up with it if it stops the melanoma.  Mean while, doctor is testing for the braf mutation if the ipi does

not work.   He has access to braf/mek drugs and one called E7080.  The one he uses will depend on the test.

It's been a long haul.

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4hope's picture
Replies 4
Last reply 2/24/2011 - 7:41am

Hi - I am a new poster but have been reading your postings recently and find them helpful and encouraging.. I have filed my profile and would greatly appreciate reccomendations or experiences that might help me to make a decision going forward on the treatment I should use.

I am stage IV with my initial melanoma removed Feb. 2010 with a 4mm tumor on my left side. . I went through 4 weeks of Interferon in  May 2010. Since then I have had a reoccurance of three melanoma nodules 1 on left side and 2 on left breast. They were surgically removed in Sept . Now I have again four more reoccuring nodules again on left side and on left breast.

I am lucky enough to live close to New York City and Phila. and have been speaking to 2 Doctors, one with the phase III Oncovex Trial and the other with the possibility of joining the phase I study of Ipi/PLX4032.

Since I am in the early IV stages of Melanoma I am uncertain which Trial if any is the right course of treatment for me. My CT scan and PT/CT show nothing yet - not even the small visable nodules. Any experience or advice would be greatly appreciated.

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kbc123's picture
Replies 4
Last reply 2/24/2011 - 3:35am

I think now I have more information to go on.  Now I am totally confused as to treatment.  WAIT and WATCH?  Who invented those words anyway?

I had my lymphoscintigraphy, (twice actually-at preadmission for mapping and then again on surgery day) I had SNB and Wide Resection last week.  My results are one lymph node is clear and the other shows....one node with single minute aggregate of Mart-1 immunoreactive cells in the subscapular location.. 

Now hearing they are both completely clear would have been my request however my body says different I guess.  My doctor says that this is not that bad.  I am a little concerned about where to go from here.  He basically says all I do right now is go for my CT scans (chest abdomen and pelvis) for a baseline and see me in three months.  He also says to watch for any changes in my body. 

I want to hear from anyone out there with any help with the following.... 

A) Does anyone have info on that lymph node biopsy info above?

B)  Did anyone out there start off where I am starting off right now? 

C) Second opinons are always important.  Believe me,I am a believer in that.  Although I trust the doctor I go to however I would like another eye to look at this..where to go on the East coast?  I was thinking Univ or Penn or Sloan or whereever someone tells me to go at this point. 

D)  I need a dermatologist for full body check.  Not sure about going to where I originally went for mole removal.  I feel like there has to be a Melanoma specialist specifically for that..I may be asking for a lot but I feel like a doctor that treats acne and Botox injections may not be for me?  I could be totally wrong but I searched specifically for that and nothing really comes up.

So much for wanting to be 1A or 1B or even 2.  I guess I am 3 now?  Ugh.  God help me with this..... 

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Anonymous's picture
Replies 2
Last reply 2/23/2011 - 5:59pm
Replies by: Phil S, Tracy Chicago

If you are able to get through the year of interferon, does it keep you from getting common illnesses as well as keep the melanoma at bay?

By common illnesses I am referring to colds, flu, etc.

I am aware that it doesnt keep melanoma away forever, but since it does pump up the immune system, it would make sense that common illnesses would be rare as well, doesn't it?

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acyr's picture
Replies 6
Last reply 2/22/2011 - 11:10pm

Hi everyone,
Below is an update provided by Sharyn's husband Jim tonight regarding her surgery. As all of us who have come to know Sharyn, she has come out of this in true Sharyn style - we send her our best wishes for a speedy recovery and hope she can get back on her trial soon.

Annette

Hi everyone
Sharyns surgery went well this morning and she is resting in Special Care, in fact when I dropped in after work she was eating her supper, she seems a little brighter then she has for a while and is in very good spirits.
Well that's it for now, she should move into her room by tomorrow night or Wednesday then hopefully home by Friday.
Regards
Jim

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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baseballmom's picture
Replies 6
Last reply 2/22/2011 - 10:04pm

I have been reading the posts on this site for quite some time now and have gotten much hope and inspiration from them.  I never felt like I needed to post, but now I do.  I was diagnosed with a choroidal melanoma (in the eye) in 1/09.  I opted for enulceation (removal of the eye) in 2/09 and was fitted for a prosthetic in 4/09.  On my first round of rescans in June of 09 a small spot was found on my right temporal lobe.  My neurosurgeon was able to remove the spot by doing a craniotomy and get 2mm clean margins.  In August of 09 I was given the choice of gamma knife for added precaution.  I chose to do it and all was going along well.  I was getting tested every 2 months, mainly MRI's of my head and PET scans.  In March of 10, a very small spot was found on my left temporal lobe which was too small for surgery and we were able to hit it with gamma knife and that took care of it.  My head MRI's have been clean since.  I just had a PET scan because it had been about 10  months since my whole body had been checked.  Well, they found increased uptake in the liver.  Had a CT scan and it confirmed what the PET found.  The doc was ready to lay out a plan for treatment but thought I looked too good for what the scan showed, so he did a liver biopsy and of course they confirmed melanoma. 

I am freaking out.  It has taken 4 weeks up to now for all the tests and results.  I see Dr. Donald Lawrence at Mass General next week and will start clinical trials, but of what, I'm not sure.  I haven't really been this scared since my initial diagnosis.  I even mention the word liver to people and just the look on their faces makes me feel like I have a death sentence.  I have 3 kids, 17,14 and 8 and am just not ready or willing to leave them yet.  I know this will be the hardest part of the fight, but I am ready for it.  At this point, I just want things to get started. 

Does anyone have any advice to offer, I have told the docs I will do anything and everything, any suggestions??

Karen

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Shelby - MRF's picture
Replies 10
Last reply 2/22/2011 - 9:36pm

I was informed today that the memorials from http://www.mpip.org/memorial.html  did not transfer over to our new site.  We aren't sure why this transfer didn't happen, but we are very sorry.  They have now been added.  However, I am missing last names for the following individuals, so if anyone can provide me with this information, I will make sure their memorials are added ASAP.  Thanks in advance for any information you may have.

Shelby - MRF

Page 1:  Sophie

Page 2:  Steve, Ronnie, Lynda, Dann, John, and Nate

Page 3:  Brenda, Irene, Randy, and Shayna

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heg50heg's picture
Replies 17
Last reply 2/22/2011 - 5:10pm

hello , as of this afternoon I found out my results from brain and body scan and was happy to hear they all came back clear. this was good and bad news as now my chemo dr. says I have 3 options - wait and see and be examined basically do nothing more - do a year of interferon , I understand that makes you pretty sick - or participate in a clinical trial, unfortanately there is none going on at this time for stage 3 patients. Stuck trying to decide what to do, should I or not do the interferon. Had 1 lymph node infected at time of surgery. will it spread yet . many many questions and really confused what to do. any thoughts or comments greatly appreciated here.

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LynnLuc's picture
Replies 8
Last reply 2/22/2011 - 2:17pm

One more round to go and that will be March 2 and I  will have completed the two 12 week cycles which means I would have had 72 injections of the peptides- Two with gp100:209-217(210M) Peptide, Two with MART-1:26-35(27L) Peptide, One with gp100:280-288(288V) Peptide, one with NY-ESO-1 Peptide / Montanide ISA 51 VG every other week in alternating thighs and 12 IV doses of MDX 1106.

I remain humbly NED! March 25 will be my one year anniversary of NED!

Today I have made it 2 weeks of going back to work. I am in training to get my FL certification - I love social work and helping others...child welfare is awesome! Training goes on for another 8 weeks or so and it's tough for me right now...body is still exhausted and out of shape but I am pushing myself and I will get my endurance back, The depression and the neg. thoughts I think is what holds me down a lot of the time.

I will probably  have a serious pary on March 26...everyone welcome to attend!!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Shelly in Switzerland's picture
Replies 1
Last reply 2/22/2011 - 1:22pm
Replies by: Vermont_Donna

I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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ErinMcH's picture
Replies 4
Last reply 2/22/2011 - 11:51am
Replies by: ErinMcH, AS123

Hi!   My name is Erin..... short story, have had one Stage 1 and two in situ's over the past 14 yrs.   I'm now a mom of 2 kids, a 4 y/o and a 15 mo old, and living in Arizona.  (Way back yonder when I was very active on mpip, I was living in Seattle).    I went to pick my 4 y/o daughter up from preschool yesterday, and she did not have her pricey Coolio hat on.....realized she was sunburned from scalp to arms.   Her school KNOWS to apply sunscreen after lunch all over her, and to wear her hat.   I was so incredibly ticked off when I came home and recognized her scalp's burn.   I went straight away to her headmaster and her 2 teachers this morning, who gave me the "oh, I couldn't find her hat (bull), and forgot to put on the sunscreen (when there's a note on the door saying to apply sunscreen....WTF.)  "You want her to wear the hat even if it's 60?"  HE-LLO.   

So I know this note is totally random and doesn't have anything to do with me (my last in situ was 5 yrs ago; I still get mole mapped yearly and see my melanoma doc here twice a year.)   I was VERY lucky I knew/know what cancerous moles looked like, and that I had the first one removed when I did.  (That was a freak show....senior in college in Cleveland (hence, Allison Vidimos/CCF as my doc; still consider her my doc), had mono in the spring, was supposed to go to Ireland for spring break.....instead, went home, begged my mom to drag me to the derm to have the mole removed (even though I was in bed basically immobile.)   Voila- stage 1.   

Now that I have my own kids, I'm a freak about sun protection.   My friends (well, some) look @ me that my child(ren) wear long sleeved/legged swimwear everywhere instead of cutsie bikinis.   Grrr. 

Needed a real outlet to vent..... I'm totally type A when it comes to melanoma.  (I sent my dads friend to a derm 7 or 8 yrs ago to look @ a mole.... indeed, he had stage 2 melanoma.  Still alive.) 

Off my random soapbox......

wanted to say Hi....let's see if my daughter will be wearing her hat and has had sunscreen re-applied when I pick her up soon from school.   

-Erin

The butterfly counts not months but moments, and has time enough~ Tagore

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I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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This abstract from 2009 claims that adoptive cell therapy is the best treatment (available in clinical trials) for metastatic melanoma.

http://www.ncbi.nlm.nih.gov/pubmed/19304471?dopt=Abstract

I recall reading about this in 2009 while my late wife was stage 4 and struggling with the side effects of chemo.

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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CLPrice31's picture
Replies 4
Last reply 2/22/2011 - 1:00am

So, my very first meeting with Dr. Dickson at Memorial Sloan Kettering is on Friday. I am anxious for it to get here! Ready to get the show on the road!

 

I am trying to put together a list of questions that I make sure to ask him. I know I don't want to overwhelm him with every question under the sun, but I was wondering if there are any qustions you all wish you had asked right away. You know, the question you thought of AFTER you got home.

 

I figure if I have a list, I will be less nervous and the appointment will be as successful as it can possibly be. smiley

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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