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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kpcollins31's picture
Replies 19
Last reply 3/19/2011 - 9:46am

I am 37, the father of three young boys, and the sole provider for my family. I was just diagnosed with melanoma on Friday (2/18/2011) and am wading through all this new information. It is intimidating and frightening. I had a growth on my forarm... was large and unsightly but the doctor was not concerned. Initial diagnosis was keratoacanthoma. Now I get this report on a malignant melanoma... Breslow thickness >8mm, Clark level V, ulceration present, mitotic rate of 7. All Greek until I start doing some reading. Now I am almost wishing I had not read anything. Still a little shocked and scared. I am scheduled for a sentinal lymph node biopsy in a week on my birthday of all days. Hoping for the best present ever which would be a negative result.

Happy to have found this forum in my reading. Wish me luck.

Kevin

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Eileen L's picture
Replies 4
Last reply 2/20/2011 - 10:43am
Replies by: jag, dawn dion, Sharyn, lhaley

Hi to everyone. Haven't been on the boards in months and I see lots of new names. For all of you newly diagnosed folks, you have found the best place to get support and information. When I was first diagnosed stage IV in September, 2007 this board saved my butt!

I got results of my every four month scans this week and I continue to be stable. I have a few small tumors on my lungs and one on my adrenal gland. All have just been hanging out without any growth for the past two years. Oncologist has now recommended going to scans every six months, which I am OK with at this point.

For those who don't know me, I originally received a course of chemo (carbo/taxol) coupled with a drug called sorefenib/Nexavar. Sorefenib/nexavar is a BRAF inhibitor as well as an anti-angiogenic, FDA approved for kidney and liver cancer. Didn't prove effective for melanoma during Phase III trials, but a few of us lucky devils responded to it.  So I have been on the sorefenib/nexavar for over three years now!

Happy weekend to all!

Eileen L

Stage IV

 

 

 

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It was just suggested to me by a new friend to post this question.   I am B-RAF positive.  How many of you out there that are B-RAF positive have ever had any luck with IL-2.  What was your experience.   Would love to hear your answers, since I am currently trying to decide my best course of action.

Hugs and Smiles to you all

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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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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It seems that melanoma stem cells are one reason why current treatments have limited success once metastasis has taken place. Although there is still much work to do, some promising research has been taking place. Here is an article that makes interesting reading:

New Therapies Offer Insight Into Battling Deadly Melanomas 

http://health.usnews.com/health-news/family-health/cancer/articles/2011/01/31/new-therapies-offer-insight-into-battling-deadly-melanomas

 

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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dawn dion's picture
Replies 4
Last reply 2/20/2011 - 3:53am

Good Morning All,

Okay I am very new to this whole thing, as I have said before, and I am CONFUSED!!!!!  Can some please explain the whole B-RAF positive thing to me.   I tested B-RAF positive, and frankly I am unsure of which route I want to take.   When my Dr. and I where discussing options and believe me it was breif she never once mention chemo to me, yet in the posts you all are talking about a chemo arm.   Did I miss something?   Please help me understand this.  My understanding is that Melenoma doesn't respond to chemo.  Again I am so CONFUSED!!!!

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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glewis923's picture
Replies 2
Last reply 2/19/2011 - 3:12am
Replies by: Anonymous, glewis923

I'm sure most of you are aware of this, but here's a new version email today.  I just wanna know where I can stand in line to get it !,  and then stand in line to get IPI at the same time,  and not tell the respective Drs. that I'm getting both !!!!!

http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/...

 

Love, 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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KellieSue's picture
Replies 3
Last reply 2/18/2011 - 11:13pm
Replies by: lhaley, glewis923, Lori C

Well, met with oncologist today and I did test positive for B-RAF. But.....apparently my insurance company now has to pre-approve me for a clinical trial. WTF? It's not like they will be paying for it, well I guess if I get the chemo arm they will. But c'mon. I wait 2 weeks for the results and then I have to wait again? If I'm denied I know my oncologist will just keep reapplying until they say Yes.

I had a good long discussion about all my options and I feel confident going forward with B-RAF. IL-2 is not out of the picture but with the toxicity I faced with it and the long recovery I would not finish the round now, I would start over again. I'm not against it but right now I'd prefer to try something that might not make me so horribly sick.

Another 8 weeks of ALT-801 might be an option also. DR. is trying to allow them to dose me at a higher dose than before. I responded both times I did an 8 week cycle.  

So I guess waiting around again.

Kellie(from Iowa) Stage IV since June 2008

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

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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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mom3girlsFL's picture
Replies 1
Last reply 2/18/2011 - 7:37pm
Replies by: JakeinNY

Hi Everyone,

I have been an on/off "browser" since my initial diagnosis in 92 and find myself needing a support system.  A brief history:

1992 mole removed from shin, clark III/iV, breslow .9mm, wide excision performed

2010 enlarged groin node, PET confirmed

3/10 groin node dissection, 4/5 nodes melanoma

4/10 port installed, begin high dose interferon

5/10-8/10 hd int complete, self inj started - on and off treatment due to low wbc

9/10 PET new node, obturator node lit

9/10 obturator node/radical lymph node dissection, 9/11 nodes melanoma

Failed interferon.  No trials take me due to auto immune disease

11/10 NED!!!  PET clear!!!

11/10- present "watch and wait"

I feel like the luckiest girl alive after a year of sheer hell!  I am grateful for a place like this to come to.  I hope I can provide others with insight as well as continuing to learn from all of you about different treatments.  I hope to offer support and hope because I will be sure to ask for it myself as my journey continues.  Thanks for listening.

Laurie

Do not fear tomorrow, God is already there.

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Hi there,

Just wondering if there are any others out there who are travelling the same road as me right now?  Ive been taking the pill for only 4 weeks today, and although i havent been scanned (2 weeks time i think) I am seeing some dramatic results in the many skin nodules i had.!!  Yipee Hooray!! Just hope and pray that this pill is working its way through my insides as well!!  & also I pray that it is working for any of you out there as well xox

Some little questions about my feet?? the soles of them are covered in blisters.  Blisters that hurt and make it virtually impossible to walk on??

Also, this rash? Its been there for few weeks now, and is mighty itchy!!  It has settled down a lot, compared to the first few days, but is still very irritating.  What cream are others using to treat it? especially on the face?

Thank  you, take care, god bless & keep smiling :-)

Simmy

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bcl's picture
Replies 14
Last reply 2/26/2011 - 11:26pm

I don't want to write these words, but feel I should tell everyone now that our dear friend Cass passed away this week. She was known here for her brilliant scientific mind, and her equally brilliant soul. She emailed practical advice and encouragement to many people  - gently coaching them to never ever give up. Cass was a strategic fighter, and one of the first responders to PLX4032 -and it granted her one of the longest periods of stable disease thus far. Even when the mel came back with a vengeance she refused to let doctors tell her her situation was dire, as she believed wholeheartedly that she would beat melanoma.  And in spite of hospital screw ups, and the trials and tribulations of everyday life, she succeeded for a very long time.
I apologize for saying this here, but I hate melanoma so f'n much, and know Cass is with me on that. She will be missed.

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himynameiskevin's picture
Replies 21
Last reply 2/27/2011 - 6:20am

Well, they told me that this months scans show about another total decrease of about 10% since last months scans. So now to about 20% decrease overall. There's nothing new and my brain is still clear. So this is good news. :)

I'm not sure what this means or what to expect as far the future goes. I don't know if typically I can/should expect to see the same/similar results next month of if this stuff stops working after a couple of months.. I don't know. Probably varies person to person. But, I've made it another month and I guess we'll just see what next month says. So... that's it. That's my update. Sorry they're not quite as interesting these days. Not much going on but waiting for monthly scans. Which I should be happy about, and I am. But hopefully these updates put some hope and good feelings in some readers thoughts and minds. I met a guy today, who went to the NIH with advanced melanoma 17 years ago. They're cured him. He'd been going back for yearly checkups and they finally told him this visit he doesn't need to come back anymore. When the guy told me his story with tears of joy, and how thankful he was to overcome his situation.  It sure me feel good, and hopeful, like anything is possible. And hopefully my updates can do the same for any of you readers. Just as yours have done for me.  Anyway I'm home now after a long day of traveling and am going to catch up on some sleep. It's been a long couple of days. I'll be browsing the boards as usual,  and will have another update in a month. :) Take care everyone.

-Kevin

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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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EricNJill's picture
Replies 2
Last reply 2/18/2011 - 4:00pm
Yesterday, we were visited by two young men from Australia that are traveling the US on an 18 day tour to spread awareness about Melanoma.  In Dec 2008 when Eric was in the hospital from the surgeries to remove his lymph nodes I did a search to learn more about Melanoma.  I came across a video from Jay Allen of Australia.  His story was identical to Eric's.  I wrote Jay a note and thanked him for posting the video...then the next day I received an email from Jay.  Jay and I kept in touch ever since.  Monday, Jay celebrated 3 years without Melanoma.  Accompaning Jay on this journey is Clinton Heal.  Clint was just named Young Australian of the Year.  He also lives with Melanoma having had 34 tumors removed.

They came to our home and stayed with us.  We have formed such a bond.  Channel 2 came to our home and covered some of our story.  Here is a link to that coverage.  http://www.wdtn.com/dpp/news/local-cancer-patient-gets-help-from-down-under  The interview was actually an hour long but unfortunately a lot got chopped!  I really wish we could have had more information shared about Melanoma and the dangers...

Jay & Clint also interviewed my daughter Sam and my father.  They are posting those videos on their blog at www.melanomaroadtripusa.com

 
 

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