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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peacefrog521's picture
Replies 15
Last reply 10/21/2010 - 2:40pm

Im a 35 yr old female who had melanoma removed and i was sent for 6 month and then yearly checkups. Around one year and 3months ago I went to my doctor and showed him a lump where my original tumor was removed. He let it go as scar tissue...told me I was fine and said come back in a year. The lump on my side in that time had doubled and started throwing heat. I went back to my dermatoligist and she biopsied it and my melanoma was back. Went for a PET scan and found out Im in stage IV and it spread to my lungs and in my lymph nodes. I had the mass removed on August 20th of this year. My appointment to just start my clinical trials is Sept 13th JUST FOR THE TESTING!!! Does anyone think that this is too long to wait seeings as this cancer is an aggressive cancer from what ive been reading. I have two beautiful children..and a man in my life that I want to marry and have our little family. I have been thru sooo much from being hit..literally by a moving car...lost my mother after my daughter was born, and she was my best friend..to having a VERY abusive boyfriend ( father of my daughter.)..to getting cancer in 2007 and now its back with vengeance. I really cant catch a break. I am overweight and HATE the sun...yet I mite lose my life over a SUN cancer...I have never been so scared in my whole life...does anyone have any advise on this wait..it grows every 3-6 months but it seems like until im setup in a clinical trial...2 months are gonna go by...its spreading and it seems like no one cares....help!!!!!

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lhaley's picture
Replies 9
Last reply 10/21/2010 - 2:11pm

Today should have been my 1 year NED anniversary..... Received a phone call that the fna was positive for melanoma.  I discovered a lump on my arm about 9 weeks ago (yikes). Since we were in the middle of our move I went to the scheduled oncology appointment to meet my new local Dr. (this was supposed to be a meet and get to know each other).  She scheduled a PET /CT which came back clear.  We then moved on to a surgeon who measured it with an ultrasound.  Came back a month later and measured again. It grew a tiny bit. FNA which now came back mel.

Have a call into my mel specialist and all records have been faxed.  My one year cystoscopy is next week. 

So, I'm back in the fight again and not very happy about it!

Linda

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NIH Scientists Discover Secrets Of Helper T Cells Involved In Autoimmunity

 

WHAT
Scientists at the National Institutes of Health have redefined the roles of several cytokines involved in the generation of immune cells implicated in severe autoimmune diseases. The study in mice showed that development of Th17 immune cells can occur without the presence of transforming growth factor (TGF)-beta, a mediator thought to be required for Th17 cell development. The study demonstrates that the interaction of three inflammatory cytokines (proteins that influence the behavior of cells) - interleukin-6 (IL-6), IL-1-beta and IL-23 - is responsible for the creation of Th17 cells that are more active in promoting autoimmunity than Th17 cells generated with IL-6, IL-1-beta and TGF-beta. These findings reemphasize the separate roles of IL-23 and TGF-beta in immunity and autoimmunity, and open up possibilities for the development of new therapies. The study appears in the current issue of the journal Nature.

You may want to go to Melanoma Missionary website and read the last couple of posts.

A race for a Cure!!!!

 

Jimmy B

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ValinMtl's picture
Replies 6
Last reply 10/20/2010 - 7:02pm

This has been a pretty sad week on the board. Losing both Wil and Kurt. It’s difficult even putting my thoughts together but I thought I should report on yesterday's treatment.

I had a cat scan prior to starting the trial and a pet scan 2 weeks (which was scheduled) after my first ipi treatment. Dr. G. gave me the results yesterday, prior to 2ndipi treatment.  She found the pet scan much more thorough than the cat scan and will be suggesting to the trial director that I have a pet scan rather than cat if it meets the protocol standards.

The main difference was that the pet noted a 5 mm focal abnormality in the posterolateral aspect of the left pulmonary lower lobe.  It’s very small but they will definitely be keeping an eye on it.

There was much more activity in my lymph nodes in the leg than in May’s scans. As well, lymphedema in the right leg, appears more severe than on the prior study. Not a surprise, since my tumors went from about 20 to more than a 100 between scans.

So what’s the good news. Dr. G. noted that some (as in quite a few) tumors seem to be drying out, she has seen that before when a patient has responded to ‘temodar’ .  Both my husband and I find that my leg appears not to be so angry.  Is ‘ipi’ working?  Let’s see what happens in the next few weeks!

Side effects of 2nd treatment..nothing to date.  Val

Live Laugh Love Nothing is worth more than this day!

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donswife's picture
Replies 6
Last reply 10/20/2010 - 6:16pm

Hello - we are currently in the process of comparing IL-2 versus MEK inhibitor as a treatment for my husbands melanoma. He had tumours on his leg and had isolated limb perfusion and infusions. Now the cancer has spread to a few tumours located in his abodomen. Does anyone have any experience with IL-2? We are currently receiving conflicting advice from the US v our Canadian doctors. thank you, donswife.

Never Give Up, Never Surrender

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lmato17's picture
Replies 14
Last reply 10/20/2010 - 5:50pm

I am being offered PLX4032 at Yale. Im not sure if I want to take the drug as I feel like it is a tease. All the research shows that the tumors start dissipating and then after months they come back with a vengeance. Has anyone taking this drug and had long term positive results? What are the side effects? Decisions decisions!! Im so sick of it. Any help would be greatly appreciated.

 

Lisa

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-The melanoma fist was found when she was 25 and they cut it out of her lower leg.
-Now at age 55, it moved into to her limp nodes on the same leg.
-They surgically removed the limp nodes and she had a major infection to deal with for several weeks.
-After more biopsies and appointments they found that the cancer had moved in the form of a tumor wrap around her main artery in her leg.
-They gave her 6 months to live and told her there is nothing else they can do.
-I have heard of people getting through these things or at least having hope and living a longer healthier life then they would have if they had given up.  
-My main concern is finding somewhere that treats mind body and soul.  She needs to have someone to talk to who is positive and makes her feel better, and this has not happened.

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Wendi Lynn's picture
Replies 13
Last reply 10/20/2010 - 4:28pm

Here is my background:

Mole removed and diaginosed as MM on 5/27.  WLE on 6/15.  FNB for enlarged lymph node on 9/1 positive for MM.  PET scan on 9/13, questionable for lymph nodes under arm.  No further testing done.  Modified left neck dissection - 32 lymph nodes removed on 9/22 - only one positive for MM. 

Today I return to my oncologist for my 2nd meeting with him (met with him first on 7/1).  He is not a melanoma specialist and honestly I'm not sure how much experience he has with it at all.  I'm wondering what questions I should be prepared with today.  I've read here that people take alot more tests than I've had so I'm not sure if I should be requesting them (blood, brain scan, CAT scan).  When I did meet with him the first time, he did say that if the lymph node came back positive that we would do Interferon. 

What are the key things I need to ask for now?  The doctors, so far, have not been very willing to volunteer info or tests (I'm assuming because I have HMO insurance), so I'd like to be prepared to ask for those things up front.

Thank you!!!

Wendi

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skysar's picture
Replies 6
Last reply 10/20/2010 - 2:09pm

I am going to have my 3rd treatment this week.  Leaving for MDA tomorrow for scans.  We are still going thru with the scans even tho I only had the Temador for the 2nd treatment due to a rash I developed.  Noticed mainly nausea, headache, low grade temperature.  We will see what this treatment brings.  My white cell count is low as well as the neutrophils.  Also my eisonophils are high...maybe due to the rash, bronchitis.

 

Sue

Hotlanta

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bluepeople's picture
Replies 7
Last reply 10/20/2010 - 1:42pm

 So my husband was recently diagnosed stage IIc, did surgery and had his PET scan yesterday.  Found out today that the PET scan was clear!  I was so worried that something would show up.  It seems that melanoma never really goes away, but this is such good news for us.  He is going to attempt the year of interferon treatments and we'll go on from there.  I just wanted to share my excitement and thank people for their support on this board. 

Akilyn

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sharmon's picture
Replies 5
Last reply 10/20/2010 - 1:09am

Hello, Since February and again  last week Brent had his scans and continues to be stable and they think one of his tumors in his lungs is completely gone.  He is now on his 9th month and the rash is managable.  He has some fatique but able to do most anything he wants to.  As part of the treatment they wanted to test the tissue again for mutation changes and decided to go into the groin this time as they thought that the lymph nodes that had shown up in the scans would be easier to reach than the lungs.  Well the proceedure never got and melanoma out of those spots.... only lymph fluid and they tried two different spots that showed up on the scans!!!!.   So we have to try to biopsy the lung tumors in December.  Interesting... his doctor was out of the country last week and we are going to talk to him to go over the scans and results this week.  Good luck to all of you and thanks for being there.  We read every post.

 

Sharon and Brent ( stage 4)

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Jim M.'s picture
Replies 4
Last reply 10/20/2010 - 1:03am

Hi everyone,

 I've been on hydrocortisone as a hormone replacement for 2 years (due to the Ipi side effect of swelling of the pituitary gland). I decided to have a bone density scan done. The results showed that my spine is on the borderline for osteoporosis. They also showed my leg bones were slightly better in the caution zone. Wow, that is a wake up call. I'm only 53. Two different doctors said the hydrocortisone leads to bone loss and my onc said long term use can certainly cause it. My primary doc. prescribes Alendronate. Reading the cautions it says Alendronate can cause jaw problems in some patients. The risk may be greater for those with cancer, using steroids, etc.

 I will see my endocrinologist at Moffitt in a week. I REALLY want to get off hydrocortisone. I tried twice, unsuccessfully. The second time it was a slow taper. Each time I had nausea and had to resume the normal dose. My hormone levels weren't increasing either. I tried calcium tablets but so far I haven't been able to tolerate them. I know a test is to drop a pill in water and see if it dissolves within 30 minutes. I'm really going to make an effort to exercise 5-6 days a week with some upper body strength exercises.

 I'd really like your advice, suggestions and experience on this topic.

 Thank you and God Bless,

 Jim M.

 Stage 3C

 

 

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himynameiskevin's picture
Replies 18
Last reply 10/19/2010 - 8:27pm

So I'm 3 weeks and 7 days out of the hospital and IL-2 treatment. All side effects have passed except for a lingering itchy-throat cough that is going away very slowly. I had an MRI done last Monday and thanks to the stereotactic radiation I had done, the tumor in my brain has "essentially vanished" and the rest of my brain appears to me clear of any new lesions. Good news. As for the visible ones on my chest and my back.. the little nodule on my chest definitely seems to be smaller than it was at one time. Good news? After about two weeks after the treatment, the large mass on my back definitely seemed smaller, softer, and any pain accompanied with the pressure of it's size had pretty much disappeared. My wife and good friend confirmed this. Unfortunately a day or two after my MRI, it started to come back to it's normal shape and size and the slight annoying pain is back. I have heard that it is possible for tumors to swell up or grow in ways before shrinking. Has anyone ever heard of this happening? Or experienced something similar? And as for the ones on the inside (liver, lungs, lymphs) I hope they're following the one on my chest and getting smaller. That would be nice. I get my CT scan on the 25th and talk to my doctor about the results on the 27th. Hoping for the best. If I have any positive response to the IL-2 it looks like I'd be doing another round of the IL-2. Which I'd be glad to do.. if that's the case. Lastly, I just found out that my tumors have the BRAF mutation, so the the PLX drug or Ipilimumab seems to be the next step if the IL-2 isn't effective. My doctor mentioned some clinical trials aren't available to people who've had a brain tumor, unfortunate. Not sure if that applies to these options, guess I'll see when I gotten there. Hope all is well with everyone here. It's nice to part of this community. A constant reminder that we're not alone, and there is always hope. Enjoy your day.  -Kevin

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donswife's picture
Replies 6
Last reply 10/19/2010 - 5:28pm
Replies by: emilypen, donswife, Anonymous, Sherron

Hi.  I am a new user who has a friend who found this site extremely helpful and informative.  It has been recommended to my husband that he participate in a clinical trial with the drug mek kinase.  Does anyone have any experience with this?  We are in Canada.  

Thank you so much!

Never Give Up, Never Surrender

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Rebecca and Bob's picture
Replies 9
Last reply 10/18/2010 - 10:24pm

Hi all,

It's hard to believe it's been two months already. My husband Bob has been doing well but he's up at NIH today getting his scans. We go tomorrow to get the results. I try to remind myself that scans are good and to be positive, but I have to admit I hate sitting in little rooms waiting.  Anyone who doesn't know our situation Bob started out as Stage III in January 2007, before our youngest son turned one. Then he progressed to Stage IV on March 2008. In April 2008 he started IL-2. It's been 15 months since his intestinal surgery for mets and I'm just praying he is still NED. 

Looking for any prayers or good thoughts for some good news tomorrow. Thanks everyone for always being there.

Rebecca

Believe

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