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.

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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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heg50heg's picture
Replies 13
Last reply 2/21/2011 - 12:30pm

Hi everyone , this is my first post on hereb and I really could use some info. Iwas diagnosed as stage 3 melanoma after having a wide excision surgery and lymph node mapping with 2 nodes removed and one come back posative for cancer . In jan o this year had rest of lymph nodes under arm removed amd all were negative. Went to see a chemo dr. and he wants to scan my brain and lungs and abdomen to see if the cancer has spread. that really scared me as my surgeon said I was stage 3 and would have to do a year of interferon and now this dr says something different . What do I believe or does any Dr. really know what this desease can do to person. any thoughts or prognoses info would be apprciated

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lindas58's picture
Replies 5
Last reply 2/21/2011 - 11:34am
Replies by: MichaelFL, lindas58, Janner

My husband was diagnosed in Dec 2010 with a melanoma on his back. Has since been removed along with the sentinal nodes in his armpits. (they were clear).  I am very confused about his diagnosis & was hoping maybe you could answer some questions  for me. Initial pathology report was very brief, 0.42 Breslow depth,  clarks level lll, 1.6 x 1.1 cm with ulceration. We can't seem to get an answer on what stage this is or if we should be concerrned at all. The drs feel there should be no re-occurance. I am beside myself with worry it will show up elsewhere. The oncologist did tell him a few things to watch for but I feel this isn't enough. Am I just a worry wort?

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Valentine's picture
Replies 2
Last reply 2/21/2011 - 9:28am
Replies by: Suzan AB, Vermont_Donna

I am almost 1 year NED.  Feb. 25 will be the one year anniversary of when they removed the lymph nodes in my left groin.  Prior to that I had 2 surgeries to remove melanoma from the bottom of my left foot. I staged at IIIb.

I have been wearing a thigh-high compression garment since May, but I have a lot of fluid hanging around my abdomen.  It took me from November to February to get an appointment with a lymphatic therapist. She has been teaching me the self massage routine, actually my husband helps me too.  So, we have only been at this a short time. Last night I/we noticed a very tender area on my side a few inches below my armpit. With my arm in the right position, there is also a lump or hard area to be felt.

I am hoping that this is somehow related to the lymphedema and is not more melanoma. On the other hand, I'm not feeling quite as jubilant as I was about reaching the one year mark. I actually had planned to celebrate like it was a birthday or something because I feel like all the time that I have lived since the cancer was removed is a gift from God.  Even with all of the physical restrictions, I am glad to be alive. Now I am afraid that the cancer may be back. The only good thing is that in the next 2 weeks I already have appointments scheduled with all of the appropriate doctors, so it will get looked at several times.

Has anyone else had something similar happen?

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lslv's picture
Replies 3
Last reply 2/21/2011 - 7:59am
Replies by: Vermont_Donna, lslv

hello, i was diagnosed with stage 3c melanoma and had 42 lymhnodes removed from my neck in november and two were positive.  i am currently NED.  i started ipilimumab have had three treatments and have developed swollen lymphnodes in my neck starting 4 days after first treatment. they ae soft and movable and i had two needle biopsied and it came back negative. i am curious anyone has expierienced the same or heard of it.  Iam still nervous about them.  thanks in advance.

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Replies by: Janner

Here is an abstract from a recent study that finds that a fever can be beneficial when receiving treatment.

http://meeting.ascopubs.org/cgi/content/abstract/28/15_suppl/8569

It seems that a higher than normal temperature is a sign that the immune system is responding as it should. Could it therefore be that fever-reducing medication should be avoided if possible?

 

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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