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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chet's picture
Replies 12
Last reply 10/25/2011 - 9:29pm

 

Hello everyone! It's been a while since I've last posted. Not too much has been going on in my life, just trying to live and appreciate each day given to me. Okay, so here's my update.

I finished all 4 infusions of Yervoy this summer, my last one being either in late July or early August. My oncologist ordered me a PET Scan and had me tested to see if I was BRAF+ the first week of September because my health insurance was about to end on September 25 and she wanted to get all that work in before it expired. Turns out that I am not B-RAF + (DAMN!). The PET Scan was done way prematurely, only a month after the last infusion, so I'm not too focused on the results I got back from it because I know it can take up to 6 months to get an immune response from Yervoy. I was really confused on how to feel after the 4th infusion because I could feel the tumor above my left clavicle getting bigger and bigger. I kept in mind that a lot of you said the tumors will inflame before it gets better. Well it seems that I'm a late responder, a few weeks ago I started to finally feel the tumor go down drastically and it still seems to be shrinking a lot and getting softer, thank God! I hope it's still continuing to work.

 
Now that I no longer have health insurance since I turned 26 years-old last month, my oncologist gave me a list of 4 different places to enter a clinical trial.  
 
Osman,
Brendan D. Curti, MD -- (his title says GU but he does melanoma too)
Director, Genitourinary Oncology Research and Biotherapy Clinical Program
Portland Providence Medical Center
Portland, OR
 
Dr. Gregory Daniels
Cancer Immune Therapy Working Group
University of California San Diego
Rebecca and John Moores Cancer Center
La Jolla, CA
 
Michael Wong, MD, PH.D
University of Southern California
Health Sciences Campus
Los Angelas, CA
 
Dr. Rene Gonzales
Melanoma Program -- University of Colorado
Aurora, CO
I need help in choosing which one is best for me to go to and ASAP. Supposedly she tells me that they're the best of the best. So far, the only treatmeants I've done are IL-2 at the beginning of this year and the Yervoy(IPI) this summer. I'm kind of freaking out because I just read a post where you guys were saying that they only provide the drug and all other expenses are on your own. I'm just wondering if any of this is even possible because I would have to be flying out from Texas everytime and I'm not even sure how frequent, but I imagine a lot. Yikes. Sometimes I want to be mad at the universe for giving me this horrible disease so young, but I have faith that I'm going to be okay and that things could always be worse. I will find a way. We will find a way. Linda, I'm praying for you to have a speedy recovery! And CarolB, I hope you're doing fine. Anyway, any advice/input is greatly appreciated as always. The strength and warrior attitude you guys have is inspiring and I continue to hold on to the hope that we will find a cure. Always praying for everyone here and those fighting this cancer!

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RMcLegal's picture
Replies 45
Last reply 10/25/2011 - 8:37pm

I recently read a discussion board post by a woman, newly diagnosed with melanoma, who wrote that several of her friends had responded "at least you don't have breast cancer".  This inspired me to write a new blog post, mostly tongue-in-cheek, about melanoma awareness unfairness.   www.hotelmelanoma.blogspot.com.  Does anyone else sometimes suffer from pink fatigue?  Best wishes to all.

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Jamietk's picture
Replies 6
Last reply 10/25/2011 - 8:30pm
Replies by: jag, JerryfromFauq, NYKaren, triciad, Anonymous, ValinMtl

I posted in August that I was at my 6 year diagnosis anniversary. I had my checkup at MD Anderson yesterday and am happy to report I am 6 yrs (and 2 months) NED from stage IIA. I hope this gives hope to some of the new early to mid stage warriors. Prayers to all for the continued fight of this beast.

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deardad's picture
Replies 3
Last reply 10/25/2011 - 5:21pm

Hi just asking if there are any durable responses to Zelboraf/Vemurafenib? I know Dick is doing well at 18months now, is there anyone else out there doing this well? 

Thanks in advance

Nahmi from Melbourne

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Lauri England's picture
Replies 7
Last reply 10/25/2011 - 2:49pm

I had my doctor appt today with Onc.  We discussed further about the scans.  Basically the Onc was thrilled that I am feeling better after the interferon and wanted me to wait 6 months for a rescan.  He asked if I was ready to go back to work.  I informed him that I lost my job in July and with the unsure CT results would it be a good idea for me to go try to find a new job.  We decided to wait until I rescan.  I was adiment about rescans in 3 months instead of 6 and he agreed.  He basically goes along with whatever makes me comfortable.  I did get a copy of the CT scan on CD and when I schedule a 2nd opinion with U of M Melanoma clinic they will have my original scans to compare from a year ago.  Anyway some of this report is somewhat confusing to me.  It shows:

3 mm subpleural ground-glass nodule in the left upper lobe laterally.  There are no other lung nodules or masses.  No pneumothorax.

There is an approximantly 10.8mm hypodensity within the liver in the left hepatic lobe, near the fissure for the ligamentum teres.  This is only visual on the portal venous phase images, and therefore likely relates to a benign process such as focal fatty infiltrative change or differential perfision.

A prominent, approx 2.7 cm duodenal diverticulum is suspected.  Bowel loops are otherwise unremarkable.

The crazy thing is I didn't get the results in writing until after the appt so I could not ask questions.  I will have them for U of M though.  My docctor says not to worry but  how can I not.  I know the original scans did not show any of this.  They were clear.  We will see. 

 

Don't sweat the small stuff. There are bigger fish to fry!

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mygirlmaddy's picture
Replies 3
Last reply 10/25/2011 - 6:41am
Replies by: Donna M., CLPrice31, MariaH

A friend posted this on her facebook.  I don't know a group that it pertains to more than this one.  I hope it inspires even one of you to go live life while you can, instead of waiting to see what the scan, doctor, bloodtest, etc might say.

 

"We seem to be going through a period of nostalgia, and everyone seems to think yesterday was better than today. I don't think it was, and I would advise you not to wait ten years before admitting today was great. If you're hung up on nostalgia, pretend today is yesterday and just go out and have one hell of a time."~Art Buchwald 

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Lisa13's picture
Replies 4
Last reply 10/25/2011 - 6:38am

Does anybody know if Yervoy can cause lymph nodes to inflame?  I felt some tenderness in my lower jaw and underneath the jaw the other night and havn't stopped touching it.  The left side now looks a tiny bit swollen and when I touch the area, it feels tender all the way down, like a muscle.  There are no lumps or bumps, just a puffy feeling all the way down.

My Dr. doesn't seem overly concerned, but has ordered a head and neck CT when I get my scans on Hallowe'en.  I just got over a cold and have some slight fullness in my ear, so it could be an infection. Just started some penacillian, so we'll see if things get better in a few days. I'm trying to keep in mind that my immune system is reacting, so it could be the lymph nodes responding.

Anybody have any idea?  I know it could be absolutely nothing related to melanoma, but it's also hard not to panic. 

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Sherb's picture
Replies 5
Last reply 10/25/2011 - 4:16am

I am new to the board, but have been checking it out for a few months. My mom (66 years old) is Stage 4 with 4.7 cm tibia tumor plus liver tumor along with iliac node tumors. She just completed her 4th ipi (10mg) infusion on Oct 5th . She has had signifigantmuscle weakness that has affected both upper and lower extremities. This makes everything just so much more difficult due to her tibia fracture due to tumor inlet. Anyone else have this happen? I am moving her to Atlanta to live with us because she can no longer care for herself. Anyone else out there have this extreme muscle weakness? Her side effects up until now have been manageable (grade 2 itch and rash), both sporadic and taken care of with benadryl. PS, she is in the midst of her scans and we get results Wednesday afternoon.

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kristine's picture
Replies 7
Last reply 10/24/2011 - 10:42pm
Replies by: Gene_S, kristine, Anonymous, Bubbles, nickmac56, NYKaren

My Husband has Stage IV Melanoma.  I was recently contacted by a physician who declares the only way to recover is this "Gerson Therapy".  Does anyone have any advise/knowledge/comments about this?

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patsy123's picture
Replies 1
Last reply 10/24/2011 - 7:00pm
Replies by: NYKaren

Has anyone been given advice by their doctor on taking vitamin d supplements while on Yervoy? If so, how much to take? I know there are studies on whether vitamin d is helpful in fighting melanoma, but wasn't sure about how much to take, if any, when starting Yervoy.

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Sherb's picture
Replies 0

I am new to the board, but have been checking it out for a few months. My mom (66 years old) is Stage 4 with 4.7 cm tibia tumor plus liver tumor along with iliac node tumors. She just completed her 4th ipi (10mg) infusion on Oct 5th . She has had signifigantmuscle weakness that has affected both upper and lower extremities. This makes everything just so much more difficult due to her tibia fracture due to tumor inlet. Anyone else have this happen? I am moving her to Atlanta to live with us because she can no longer care for herself. Anyone else out there have this extreme muscle weakness? Her side effects up until now have been manageable (grade 2 itch and rash), both sporadic and taken care of with benadryl. PS, she is in the midst of her scans and we get results Wednesday afternoon.

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Lisa13's picture
Replies 3
Last reply 10/24/2011 - 1:29pm
Replies by: j.m.l., Lisa13, Terra

For the past few days, I've had congestion and left ear was a bit congested.  Still have these symptoms, but noticed today my left side of neck muscle and face is a little puffy.  I felt my neck and don't have any lumps or bumps, you can just feel puffiness down the neck and notice the left side seems more swollen then the right.   I have no other symptoms. Do you think this is a gland problem from the yervoy??  I have placed a call to my clinical trial nurse to ask for sure.  I know thyroid swelling can happen in the front, but I've seen pictures of it occuring on the sides of neck as well.

Many impossible things have been accomplished for those who refuse to quit

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heg50heg's picture
Replies 3
Last reply 10/23/2011 - 4:49pm

after being off interferon for 3 months I have found a small lump in my neck just below my chin on the left side. I am currently stage 3 and only took interferon for 3 months as I had to quit the drug because of the side efects. I developed a bad case of pancreatitus and my Dr. decided that interferon would not be a good thing to start back up after I got over that 3 months later. So my question is can melanoma come back that fast and could the lump in my throat be melanoma. It is about the size of my finger that I can feel.

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Anonymous's picture
Replies 5
Last reply 10/23/2011 - 3:41pm
Replies by: Anonymous, LynnLuc, Bubbles

Hi,

I am a newbiew to this site. I am stage 4 & waiting for an anti-pd1 trial or anti-pdl-1 trial to open. I have not done yervoy so this ismy first immunology treatment.

There are a few manufacturers (Curetech,Genetech, BMS & Merck) all coming out with anti-pd1 oranti-pdl-1 trials by the end ofthe year.

Does it matter who the manufacturer of the PD1 drug is? Will Curetech PD1 drug be as good as Merck PD1 drug  or BMS anti- pdl-1 drug. I guess what I am asking you, are all anti-pdl-1 &anti-pd1 drug equal and it does not matter who the manufacturer of the drug is?

Also, how does the pdl-1 &pd1 drug work? Does it work like IPI and does it take weeks for PD1 drug to work? Will there be tumor shrinkage soon after starting drug?

Do ALC go up if you are a responder to pdl-1 &pd1?

What are the signs that indicate you are a responder besides tumor shrinkage?

What are the side effects of pdl-1 & pd1? On one of the trial consent form that was given to me, it stated a side effect could be a lowing of white blood cells. That is very differenct than Yervoy where the ALC goes  up.

Any information about anti-pd1 (pdl-1) would be extremely helpful so that I know what to expect.

Thanks  so much

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/23/2011 - 2:38pm
Replies by: Jan in OC, Gene_S, JerryfromFauq, lhaley, Anonymous

Jan,

 

I hope things are going well. I am a little worried that you have not posted for awhile.

 

Anyone heard from Jan?

 

Mary

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