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 3
Last reply 11/13/2013 - 9:51am
Replies by: Anonymous, JerryfromFauq, POW

Hi

I know my husband's melanoma does not have the Braf mutation.... So what does that mean for him and his prognosis?? I have read on here that people with Braf can have certain treatments that would not work on non braf melanoma....does the Braf mutation make the Melanoma more  aggressive or does  it really have no bearing on outcomes??  Does having the Braf mutation  cause the melanoma to spread faster??

All of this info is hard to digest.. I would appreciate any input

Thank you very much,

Nancy

 

Login or register to post replies.

sofistef's picture
Replies 6
Last reply 11/13/2013 - 5:05pm

Hello,

 

We had the appointemnt with Dr Atkins this afternoon. He thinks systemic treatment is the best apporach right now as he fears the surgery will not be a solution because there is a hilar lymph node that is borderline and it might me affected. I have an order for adbominal and pelvis CT and and MRI that I hope will show nothing. Bloodwork was normal. My head is spinning and it's hard to find an epithet to describe the state of fear I experience right now! Unforunatelly the are no more seats on the ippi/ nivolumab I was hoping I can enroll and this upsets me ! I feel like stupid melanoma was ahead of me this time as well, I'm sorry I was not agresive enough to convince my doctor to remove the lung tumor while it was 5 mm , I accepted to wait 2 more months! I did the same thing 3 years ago when the derm told me not to worry about the mole, as it was nothing!!! I hate the odds I'm presented, but I know I must do whatever it takes be among the lucky ones to respond to whatever treatment as my kids need their mom! I hate this even more as I never ever in my life used a tanning bed or was a sun worshiper, but yet this happened to me!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 11/13/2013 - 8:26pm
Replies by: Anonymous, ecc26

Any thoughts whether this would work?  My friend is not allowed in any other trial but MDA has offered the TIL for him.  I worry about the toxicity.

Login or register to post replies.

hdelancey23's picture
Replies 13
Last reply 11/15/2013 - 7:18pm

My Mom has been fighting Melanoma for two years now.  She has been so strong and brave through out this struggle.  We just got the news that there is nothing left to do and suggested she go into Hospice this last Sunday.  I am very sad about this news and am not ready to let my Mom go.  She is so young, she will be 48 on November 28th.  It hurts so bad knowing that our time is so limited.  I pray every day that God gives her peace in her heart and takes her pain and hurt.  I feel like I should have done more to be there for her and spent more time with her.  Our family will never be ready to lose my Mom, and I don't see how we are going to make it through this.  I just don't really know what to do.  My heart hurts right now but what keeps me going is that I know that God will take her home and that she will be looking down on us when she does go.  Please if any body has any advice on what to do, how to cope, encouraging words and most importantly what I can do to help my mom right now please comment. 

 

Thank You.

Login or register to post replies.

sofistef's picture
Replies 4
Last reply 11/12/2013 - 6:30pm

Hi ,

 

My name is Dana, I read the post daily but never posted before!

I and a 38 years old mom of 2 ( 4 years old girl and 6 years old boy) . One mole appeared on my thigh during my second pregnancy in 2010, everybody felt this was pregnancy related sking changes. In March 2012 I had it removed and it was 1.5 mm melanoma nonulcerated, sentinel node positive (.45cm) micromet. Had the rest of nodes removed and non of them were positive for melanoma. . I toured Sloan Kettering, John Hopkins, Georgetown Hospital, hoping to find a trial, with no luck as the tumor burden in sentinel was not big enough. Had 3 month of interferon.

I just learned that it is back in my right lung, (1.2cm nodule) and we are devastated. I will meet with my oncologist today, and I hope I will be have more luck with clinical trials this time!  I will probably have more scans and bloodwork, biopsy and  I pray for good results! 2 months ago the CT did not show anything other the 5 mm lung nodule that now grew to 1.2 cm.Two weeks ago my bloodwork was normal.  My head is pounding, I cannot sleep and I try to find resources to stay strong and positive, as my kids and husband need me and I want to see them grow!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 11/13/2013 - 4:08pm
Replies by: POW, Golda_, Anonymous
can anyone explain why just not prescribe TAFINLAR?
TAFINLAR prescribed after Zelboraf?
How do you know when Zelboraf stops working ?
 
Please do not send me for an answer to the treating doctor.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 11/13/2013 - 10:14pm

My husband was recently diagnosed with melanoma on his face, close to his eye. We went to Moffitt where we were told what the next steps would be....procedure to remove tissue to check margins. After the margins were clear he would have surgery to remove the tumor and possibly need a skin graft. Well, 6 days later, on our ride to Tampa (only 45 minutes) we get a call that the margins were not clear and more samples would need to be taken and surgery postponed. My husband is not a whimp but both of these procedures were terrible for him, just a local, meaning injections in his face, close to his eye. Why can't they give him something.....he will be out for surgery. Now the doctor is saying the area is larger, not necessarily deeper but  very likely grafting will be necessary. He will take it from around his upper chest. We are both fairly intelligent people, but I just feel like we haven't asked all the right questions. We really have no idea what to expect regarding recuperation, etc. Any advice ? 

Thank you!

imd

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 11/19/2013 - 8:13pm

My mother was just diagnosed on Halloween in Baton Rouge Louisiana, with what the Doctors thought was  metastatic ovarian cancer, and a week later we found out that it has spread to her brain, and there are currently five tumors in her brain. Just last Friday the doctors decided that instead of ovarian cancer now they re read the biopsy and say it is melanoma,Need a new melanoma specialist! The doctors have misdiagnosed my mother twice and now I am looking for a new option, because this approach is very slow moving and our doctors seem to be confusing themselves. We are trying to go to MD Anderson. Any advice? Need to ACT FAST!!!! 

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.

Ed Curran's picture
Replies 3
Last reply 12/19/2013 - 3:20pm

I had the tumor removed Oct. 18.

Type is Nodular

Ulceration is 10 mm in width

Mitotic rate is 10 per square mm

Thickness 7.5

Clark level is IV

The operation lasted two hr and he took out a good hunk which measured 13.2 x 4 cm dept of 2.7 cm.

 

I am meeting with my Oncologist on Nov. 19.  I am just trying to find out what I should expect  when I see him.  If I will need preventive treatment or not.  I get so many different answers I don't know what is correct or bogus.

Thanks for any help.

 

Login or register to post replies.

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.

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.

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.

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.

Pages