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
yoopergirl's picture
Replies 11
Last reply 2/22/2012 - 8:06pm

I had my 3rd infusion of ipi on Monday, my labs were all good so they proceed with the treatment even though I had the chills and achy feeling, the nurse gave me tylenol and that seemed to help. Yesterday was a bad day along with the chills I developed diarrhea and still have it today so now is the time to call the doctor, I know he said to take immodeum and I do have it on hand but still want to talk to the doctor about checking for colitis, is there a blood test or cat scan, what do they do? I am so glad that I happened across this site it has brought so much information for me since my doctor is not familiar with Yervoy.   Will let you know what he says to do, can't call for another hour since Wisconsin is an hour behind us.    yoopergirl

Login or register to post replies.

Kelly7's picture
Replies 7
Last reply 3/2/2012 - 2:36pm

Hello,

 

My brother is currently in the hospital undergoing IL2(week 2 of 1st phase). I was just wondering if anyone knows anything he could try to relieve some of his insane itching besides Sarno lotion, and there is a only a shower, so no oatmeal baths. I will be at the hospital all day and night with him, unfortunately I wont be able to check my email, but you can text me any ideas, and I can run out to the store! My number is 954-851-3793

Thank you, thank you!

I really appreciate it!!

Login or register to post replies.

Judy D's picture
Replies 3
Last reply 2/25/2012 - 9:05am

I have been taking Zelboraf since Oct. 2011 and so far NED!  My question is how  long do we stay on this drug and has anyone experienced severe hair loss, loss of appetite and stomach problems?  Any help would be greatly appreciated, thank you.

Judy

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

Login or register to post replies.

emilypen's picture
Replies 23
Last reply 2/24/2012 - 1:50pm

 

Jason Edward Gwozdz passed away peacefully at home in Toronto, Ontario on Sunday February 19th, 2012 after a long fight with melanoma.

He is survived by his wife Emily, newborn son Jamieson, mother Adrienne, father Edward, sister Bobbi-Jo, brothers Sean and Tim, his niece Jorja and nephews Riley, Benjamin and William.

Jason requested that a celebration of his life be held, his wake will take place from 3pm – 6pm on Sunday February 26th, 2012  at The Gladstone Hotel  1214 Queen St. West Toronto, Ontario.

In lieu of flowers Jason requested that donations be made in his name to The Melanoma Research Fund at Princess Margaret Hospital.  Please send to :

The Princess Margaret Hospital Foundation
610 University Avenue, Toronto, ON M5G 2M9 and quote charity # 886 00700 1267.

Login or register to post replies.

Laurie from maine's picture
Replies 2
Last reply 2/22/2012 - 1:48pm
Replies by: himynameiskevin, jmmm

hi,

I am going for my second ippi infusion this week.   I had been optimistic and still am, but I have had three tumors now appear on my hips they are not surface ones but deeper and feel like the size of a grape.  I wonder have others had tumors appear while on ippi and then disappear, or is this a bad sign that it is not working for me?

I have a tumor in my lung which seem to be getting slightly bigger just judging by my breathing  but now seems slightly better, or I could be just use to it, but at least it doesnt seem worse.

thanks

laurie from maine

 

Login or register to post replies.

blairashley's picture
Replies 9
Last reply 2/26/2012 - 4:46pm

New here... Going in for SLNB & wide-excision on Friday.  Was diagnosed on 2/10 and my path report said it was 2.4mm and T3a... doc mentioned it likely being Stage 2.  Doc didn't seem too worried about it spreading and we didn't discuss what would happen if the SLNB was positive.  Anyone have a similar diagnoses?  If so, what has your experience been?  I've only told a few "need-to-know" people about this... but I keep getting the same response... "Oh, so & so had melanoma, they cut it out and they were fine."  Hmm.  Any intelligent advice out there?  FYI, mine was a new mole on my abdomen that literally came out of nowhere and became raised & sore to touch within a year.  No genetic history that I know of.  Thanks!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 2/24/2012 - 9:25am
Replies by: Doug-Pepper, washoegal

I'm 5 years NED after treatment!  My oncologist has released me, but I still have that fear in the back of my mind of recurrence.  I felt fine when originally diagnosed, so now I wonder what signs should I be on the lookout for?

Login or register to post replies.

kelsta78's picture
Replies 3
Last reply 2/24/2012 - 9:12am
Replies by: Doug-Pepper, Leigh, DonW

Hi everyone, I found this web page and have been doing some research.  I am finding all the info confusing.  But one thing I do know is that I am going to be proactive about this.

I was told 2 days ago that I have Malignant Melanoma.  I didn't even get given a copy of my pathology results of the mole that was cut out of my back.  I did see a surgeon yesterday and asked him if I could see it.  The only info I took in was that it was 1mm and Clark level IV.  I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was.  I also wasn't given a 'stage' like I see so many other people have been given. 

The surgeon says that is all that should be needed and that I have a 15% chance it could return.  Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them..  No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone). 

I do remember getting a swollen gland under my armpit recently that took a week or two to go down.  Could this be related?  My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).

What else can I do to be proactive about this.  I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.

Login or register to post replies.

Hi everyone, I found this web page and have been doing some research.  I am finding all the info confusing.  But one thing I do know is that I am going to be proactive about this.

I was told 2 days ago that I have Malignant Melanoma.  I didn't even get given a copy of my pathology results of the mole that was cut out of my back.  I did see a surgeon yesterday and asked him if I could see it.  The only info I took in was that it was 1mm and Clark level IV.  I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was.  I also wasn't given a 'stage' like I see so many other people have been given. 

The surgeon says that is all that should be needed and that I have a 15% chance it could return.  Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them..  No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone). 

I do remember getting a swollen gland under my armpit recently that took a week or two to go down.  Could this be related?  My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).

What else can I do to be proactive about this.  I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.

Login or register to post replies.

kelsta78's picture
Replies 12
Last reply 2/23/2012 - 3:29pm

Hi everyone, I found this web page and have been doing some research.  I am finding all the info confusing.  But one thing I do know is that I am going to be proactive about this.

I was told 2 days ago that I have Malignant Melanoma.  I didn't even get given a copy of my pathology results of the mole that was cut out of my back.  I did see a surgeon yesterday and asked him if I could see it.  The only info I took in was that it was 1mm and Clark level IV.  I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was.  I also wasn't given a 'stage' like I see so many other people have been given. 

The surgeon says that is all that should be needed and that I have a 15% chance it could return.  Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them..  No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone). 

I do remember getting a swollen gland under my armpit recently that took a week or two to go down.  Could this be related?  My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).

What else can I do to be proactive about this.  I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.

Login or register to post replies.

Hope Returning's picture
Replies 8
Last reply 3/16/2012 - 5:20pm
Replies by: Anonymous, m888g, Theresa123

There were posts that Steven O'Day will resume working, but not in the Angeles Clinic, but for months no one gave any update. Does anyone know what happened to Dr. O'Day and whether he is back to work anywhere?

Login or register to post replies.

There were posts that Steven O'Day will resume working, but not in the Angeles Clinic, but for months no one gave any update. Does anyone know what happened to Dr. O'Day and whether he is back to work anywhere?

Login or register to post replies.

Replies by: boot2aboot

"The clinical use of BRAF inhibitors is being hampered by the acquisition of drug resistance. This study demonstrates the potential therapeutic utility of the HSP90 inhibitor (XL888) in 6 different models of vemurafenib resistance. Experimental design: The ability of XL888 to inhibit growth and to induce apoptosis and tumor regression of vemurafenib-resistant melanoma cell lines was demonstrated in vitro and in vivo ."

 

The heat shock protein-90 inhibitor XL888 overcomes BRAF inhibitor resistance mediated through diverse mechanisms

  1.  * Corresponding Author:
    Keiran S.M. Smalley, Molecular Oncology, The Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL, 33612, United States keiran.Smalley@moffitt.org

 

This may be a way to get a complete response, with the addition of a HSP90 inhibitor.

This Paper is for BRAF positive Melanoma Patients.

 

Best regards,

 

Jimmy B

Login or register to post replies.

I have stage 4 Melanoma that has moved to the lungs, they found 15 nodules on my lungs ,  while I was taking Leukine. The rest of my test show that the rest of my body is clear including the brain. I have since started taking Ippi , will be doing my second treatment on the first of March at James Cancer Center in Columbus Ohio. I know all the side effect it can cause but have yet to have any of them. I was just wondering how effective that it has been for someone else. I know Dr. Kendra said it would get worse before it got better, But how much worse can it get.? I have 3 small school age children who are constantly bring home some kind of germs to share with me, so how do I know the differnce between this and the side effects of the drug?

Login or register to post replies.

AlanM's picture
Replies 3
Last reply 2/21/2012 - 5:43pm
Replies by: Janner, AlanM, Karin L

Prior to interferon induction I did not have any ringing in my ears. Since the induction and 1 month of low dose treatment in the fall of 2010 the ringing has not stopped. I stopped the low dose part of the treatment due to retina damage. Curious if others have had this side effect and if so, did it ever go away? Very distracting......Is there anything to do about it other than just suck it up and live with it?

Login or register to post replies.

Pages