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.

Expand/ Collapse Topic
 
Replies By
View Topic
nancyg's picture
Replies 5
Last reply 11/12/2013 - 12:49pm
Replies by: HopefulOne, nancyg, ecc26

My husband will be getting his last dose of Yervoy next week Monday...he has had basically zero side effects... At his last appointment his Dr said... "Next time you come in I want to see a rash or something so we know this is working...."  So we are nervous ... It is horrible not knowing what is going on in that body...the weird thing is that a few lumps have popped up... One on his shoulder and two on his stomach.  We do not know what to think !  He has his first CT scan  Dec 13.. After his 4Yervoy treatments to see what is going on... So I guess my question is did any of you have absolutely zero side effects-not even a rash -and the Yervoy worked???         

Thank you so much.... This is all so scary and frustrating..

Wishing you all the best,

Nancy

Login or register to post replies.

hopeagain's picture
Replies 3
Last reply 11/12/2013 - 11:34am

Was stage IV with many mets everyone. Ipilimumab extrememly successful taken initially 6 years ago, and received boosts twice along the way but cannot receive again due to a side effect from the IPI. Now mets to liver and need some update on new treatments (not biochemo/IL-2/interferon) [such as anti-PD1, etc...] and if you had any experience with them.

THank you very much,

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 11/12/2013 - 10:06am
Replies by: ecc26, Anonymous

Hi,

I had my sentinal lymph nodes removed on my right groin. I have a pimple there now and it's been there for a week and not going away. It also feels kind of lumpy and I don't know if that is the surgery or the pimple.

Has this ever happened to anyone else? Can a melanoma come back in the form of a pimple?

Thank you

 

Login or register to post replies.

jcmp's picture
Replies 1
Last reply 11/12/2013 - 9:10am
Replies by: Golda_

Hi Tim,

Do you know whether those who are BRAF 600E positive and have had Zelboraf in the past are eligible for the GSK BRAF and/or MEK inhibitor?  I read the GSK press release which states that the BRAF inhibitor (Tafinlar) is not indicated for use for those who have BRAF-wildtype melanoma.  For the MEK inhibitor (Mekinist), it says the same thing and also that it is "not indicated for the treatment of patients who have received a prior BRAF therapy."   If that's the case, it seems that everyone who has had Zelboraf cannot have the MEK inhibitor.

Could you please clarify this issue? 

Thanks so much.

 

Login or register to post replies.

NYKaren's picture
Replies 7
Last reply 11/11/2013 - 8:00pm

Hi everyone,

So I was on intermittent dosing of Tafinlar and I stupidly didn't start taking it again at the right time. we have no idea if those extra two weeks made some small tumors develop, but they did. 

Ten days later it was back for gamma knife (second time.)  I was the last case of the day and had  17, yup 17 tumors.  The actual gamma knife was two hours. Apparently when they're very small as these were, the  procedure takes a long time.  Thankfully they used anesthesia.  In at 7:00 am, out at 8:00 pm. 

When I had MRI last week, they found my ear is still clear and lymph nodes in my neck were all clear too. I seem to be having a mixed response thing going on.  My blood work is really good too.  Going to onc on 11/19, and neurologist/ onc are tapering my Decadron yet again. Between the depression,the weight and the leg pain, I'm more than ready.   Luckily when my brain started freaking out, I increased the dosage, so I know it was necessary...

I'll report in after my next onc appointment. 

Karen

Don't Stop Believing

Login or register to post replies.

As I approach completing three years in this trial I am developing wild type melanoma on my chest and face. I have had six knife fights since Ausust getting rid of it while it is still in situ. The speculation is that the BRAF at V600 E has been acting as a governor of a cassette of downstream genes that keep them in check, but once the drugs took over the BRAF, and inhibited it, it caused the downstream grouping to fire up wild type melanoma. This is not happening with my non-redhead cohorts. There is a hypothesis that since my red haired genes are not recessive, but active, it only affects red heads.

The rest are not developing this wild type melanoma. I would like to know if this is happening to other red heads in the trial. The question to be answered is whether or not the BRAF has returned to normal, and if so, by stopping the inhibitors, would it again start to govern the downstream gene grouping that is causing the wild type melanoma, and shut it down. Isn't it a grand thing to be part of this cutting edge of knowledge? I feel so fortunate to still be here and have my primary BRAF positive cancer to remain in check so long, but maybe it is time for an experiment within the experiment and see what happens if I stop the meds. I might run out of skin to stretch if this goes on too long!

The history of the world is the battle between superstition and intelligence.

Login or register to post replies.

Hi all,

I am a melanoma stage 3 survivor. I started a cancer awareness company called WEAR AWARENESS to give back to those that are still fighting their cancer. Proceeds of every shirt sold goes to current cancer fighters for everyday expenses not covered by insurance. Things like co-pays, traveling expenses for long distance doctor appointments, etc. 

If you or someone you know is currently battling melanoma, go to www.wear-awareness.com and NOMINATE them. We need cancer fighters to give back to, and are excited to do so!

We have a melanoma designed t-shirt that is really cool. Our shirts are soft and durable. Check it out www.wear-awareness.com Below is a brief story of my melanoma, but you can find a longer version on my website. 

I was diagnosed a week after I graduated from college. I was 22. I had an immediate surgery to remove my melanoma which was on my back. The doctors biopsied a few lymph nodes in my right groin. I was devastated when they came back postive with cancer. I then had a surgery to remove all lymph nodes in my right groin. They had to cut a leg muscle and move it, then reattach it to reach all of my nodes. This caused my to not be able to walk for a month. I then did interferon for a month. I was the few 10 percent that lost over half of my hair from this treatment. I then decided not to continue with the 11 month treatment program.

THANKFULLY I have been cancer free for 20 months.

Thanks for reading! Prayers go out to everyone going through melanoma. I have been there...you will get through it and be stronger for that!

Casie 

Login or register to post replies.

BrandyW's picture
Replies 9
Last reply 11/9/2013 - 9:22pm

My mom went to the doctor for lower back pain. When the did the MRI (looking for disc issues) they saw lesions on her liver and spine. She was told it was metastic melanoma. They did a full scan (ct) and we are waiting on the results until she gets back from vacation on the 18th. Also did a needle biopsy on her liver.   I'm almost certain she has rumors in her lungs as well because she coughs a lot.  I am going with her to her first oncology appt. What questions should I ask? 

I found this site while searching on info... Most of it looks pretty grim. Anyone here in a similar situation or know someone who is? Any help on treatment and what to expect is greatly appreciated :)

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 11/9/2013 - 11:32am
Replies by: JoshF, Anonymous

All of the presentations were videotaped and can be watched here.  Please feel free to share the link with other patients or caregivers who might be interested.

http://media.surgery.northwestern.edu/Mediasite/Catalog/Full/6521fd9b9b174e1f8c5e567dc178c9a721?mkt_tok=3RkMMJWWfF9wsRonvqXNZKXonjHpfsX74%2BwpXaa3lMI%2F0ER3fOvrPUfGjI4DTstjI%2BSLDwEYGJlv6SgFTrXHMbpv1LgPWhQ%3D

Login or register to post replies.

JerryfromFauq's picture
Replies 1
Last reply 11/9/2013 - 9:13am
Replies by: SABKLYN

The Molecular Targets and Therapeutic Uses of Curcumin in Health and Disease

 edited by Bharat B. Aggarwal, Young-Joon Surh, Shishir Shishodia

 

Would like to borrow  it.

 

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

ncdaniel's picture
Replies 2
Last reply 11/8/2013 - 10:38pm
Replies by: ncdaniel, Jeff G.

Has anyone had TIL treatment without the IL-2 to follow? Does anyone have a good or bad story to share as my wife considers this treatment option. I know in most cases the TIL is done with Chemo and Radiation plus IL-2  but in this case it would be only chemo and the Til cell transfer. any comments are more than welcomed.

Trust in God - Live one day at a time

Login or register to post replies.

Hello Everyone,

I am on my second day of Temodar and I am in so much pain.  My head back and neck is killing me.  These are all sights of my melanoma.  My throat is closing up again and I can barely talk or swallow again.  I didn't feel like this when I was on the Mek/Tanfinlar, it actually helped my throat and head.  I don't want to quit the temodar if this is normal.  It's like my mets are inflammed and causing me pain.  Has anyone done temodar with similar effects.  I feel like I am dying.  I have a call in to my doctor to see what I should do.

As far as getting gamma knife again, they won't do it because one of my brain mets is too close to my eye.  They will do external radiation if my vision starts to get affected.

Thanks for your help.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Login or register to post replies.

DonnaK's picture
Replies 1
Last reply 11/8/2013 - 2:11pm
Replies by: Janet Lee

Has anyone had radiation to the spine (low dose)?  What about radiation while taking dabrafenib/tremetinib?  John has a 3cm mass in his spinal canal (ID'd by MRI) but the docs believe it is asymptomatic.  We initially declined the radiation as he had a very poor reaction/response to WBRT but as John's pain increases, I am wondering if it is actually neuropathic pain.  Any successes with spinal radiation?  What about treatment with neurontin or other drugs?

Thanks,

Donna

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 11/8/2013 - 1:50pm
Replies by: Janet Lee, Anonymous, Owl, DeniseK

So I started Temodar this evening.  I got sick almost immediately.  I think I will take it on an empty stomache or right before I go to bed next time.  I have a call into my gamma knife doctor to confirm they won't do gamma knife again so I can shop around for someone who will.  Basically they are saying that if the temodar doesn't work I don't have any options left.  IL-2 is out due to brain mets.  Dr. Minor says he hasn't had success with IL-2 in people with brain mets because it makes the brain swell and it's counter-productive.  I haven't researched this myself but I trust him as a specialist.  

I've been told to ask Merck for compassionate use of their PD-1 drug so I guess I'm going to send them a letter and hope they will help me.  

Has anyone heard of any FDA approvals coming soon?  

I guess I will know within a week if the temodar is working or not so it would be nice to at least have something to continue my fight.  

I have done zelboraf, mekinist/tanfinlar, ipi, WBR, SRS, and gamma knife.  Anybody with any suggestions is welcome.

Thanks so much

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 11/7/2013 - 9:16pm
Replies by: Anonymous, Tina D, Michelem, Janner

I can't figure out how to do this on the new site

Login or register to post replies.

Pages