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
Terra's picture
Replies 5
Last reply 8/14/2010 - 11:38am

I have been trying to follow everyone's posts - but it seems so busy out there.  We also have had a busy summer.  To recap:

Spring scans showed a nodule on Derek's left lower lobe, surgery confirmed it was mel and of course stage IV

PET/CT after surgery showed uptake in two more spots on left lower lobe, 1 in right hilar region of lung (uptake of 62), and 1 in liver 

Our onc in Kingston suggested IL-2 in Buffalo or a clinical trial with IL-21 vs DTIC in Kingston.  She veered away from IPI saying she had heard more about side effects then success (which I thought was a little strange).

We went to see an onc at PMH in Toronto and felt really good about this appointment.  We discussed Derek's history at length, discussed some possible options, he doesn't like IL-2 because of toxicity and has had bad experiences with it (Derek really didn't want to do this anyway), but we did settle on a sort of loose Plan A, B, and C.

Derek will be rescanned this week along with an MRI of brain (which is frightening), he is unfortunately BRAF negative but they are testing him at PMH for the NRAS mutation so that he could qualify for their fall phase Ib trial testing BKM120 (P13K) and GSK1120212, then he will start IL-21 vs DTIC in Kingston, if randomized into IL-21 and it doesn't work he could begin another chemo drug in a trial at Sunnybrook, then onto either ipi or the new trial at PMH, if in DTIC and it doesn't work we will go right to ipi or the trial. 

 

Just looking for some thoughts - good or bad comments about our 'plan' - I have some confidence that this is the right path for us.  We have a 3 and 1 year old and Derek wants very much to be close to them so this will allow that - I just don't want him to miss anything.

 

Terra 

Login or register to post replies.

babybluiz's picture
Replies 9
Last reply 8/14/2010 - 10:45pm

My name is Laura. I recently lost my husband to the Beast in May. I am having a rough time dealing with his passing. Wanted to know if there are any other widows or widowers out there to talk with. It is so hard to go from living, breathing melanoma for so long as a caregiver, to just stop now. I would like to help in any way possible to get the awareness out there for melanoma. If anyone knows of any volunteer work in Colorado. I would love to help. I have never done this before but would like to set up a support group specifically for Melanoma patients, survivors and caregivers. My husband and I looked and looked for one but never was able to find one. I would like to change that. I am in Colorado Springs but was thinking of having it based out of Denver due to being a little more centralized Colorado. So people from around the state would be able to participate if they wanted. If anyone would be interested in attending a support group like this please let me know. As I mentioned before I have never set up a group like this so any advise on how to go about doing so would be helpful as well.

Login or register to post replies.

Bill G's picture
Replies 2
Last reply 8/14/2010 - 10:47pm
Replies by: Tim--MRF, Sherron

Haven't seen her post for some time.  Hope all is well

Login or register to post replies.

Sharon in Reno's picture
Replies 16
Last reply 8/15/2010 - 6:32am

Hi All...just an update on what I'm doing...

Last Friday I was doing a PET scan, was in the machine and 30 minutes go by and I'm crying in pain, it's my back right where the #4 rib is, digging in my back. I can't do it and beg the guy to let me out, he does. They want to sedate me but I don't have a driver..oh well I say, catch me next time. I go do my left arm ultra sound, no problems. Monday I do a CT scan (no problems) results are back and I now have 2 new lesions on my chest wall right next to my #4 rib....flash forward after seeing onco & surgeron...they want to do day surgery  on Aug. 31. So surgery is set to remove the 2 new lesions on my left chest wall and the lump under my left arm...then we look at Ipi....geez...scar count is 27 and holding.....so thats the latest with me. love to all, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Login or register to post replies.

Lori C's picture
Replies 5
Last reply 8/15/2010 - 6:42am

Will had his second treatment of cisplatin and Taxol Tuesday.  He's doing okay but is still struggling with hip pain and occasional other pain.  His doctor is going to increase his fentanyl patch dosage to address this. 

It's very hard to say how he's doing.  He had one nasty lesion on his head that has dried up and shrunk considerably, and one on his chest is also smaller.  He is going to have a scan on Aug. 30 and is scheduled for more chemo the next day.  He was sad today - just emotional and thinking about dying a lot.  He has days like this and they are so hard.  I am still being hopeful - it's nearly Sept and we were expecting to perhaps lose him in May, and he's definitely not worse.  On July 9 his former oncologist pretty much told us he could go into liver failure at any time and obviously that has not happened either.   But whenever he has a bad day I'm always afraid it's the start of a downhill slide, so keeping optimistic is tricky.  His nurses and doctors at Rush continue to be very helpful and pro-active, and that is a huge relief.

Please keep him in your thoughts and prayers. 

Login or register to post replies.

Janet2's picture
Replies 3
Last reply 8/15/2010 - 1:05pm
Replies by: Janet2, Sharon in Reno, King

My CT scan just over a week ago revealed that the tumours on my liver and in my lungs have increased in size, plus there is other new stuff. I have been turned down for Ipilimumab on compassionate grounds because of other health problems so I'm starting carboplatin on Tuesday, plus the injection in my stomach to boost white blood cells the day after.

Janet 

Login or register to post replies.

I have spoken to sue just a little bit ago. There is a little improvement with Jerry, but still not doing well. She said the only thing that they need as of right now is a place to stay.  I am currently working on trying to contact friends and family in Denver area to find them a place to stay as I live to far away. If anyone in the Denver area or close surrounding has the space for 2-3 people or if anyone knows any one living in these areas that would be willing to open up their homes to the family that would be a great help 

Login or register to post replies.

nicoli's picture
Replies 10
Last reply 8/15/2010 - 7:59pm

Hi, just wanted to pop in with some good news.  I just received the results of my recent PET scan and blood tests. ALL GOOD! No sign of melanoma returning. Stage III, NED (No Evidence of Disease) since February  2010. 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

Login or register to post replies.

ipi in DC's picture
Replies 12
Last reply 8/15/2010 - 10:23pm

Hey everyone,

I went for two month scans last week at MD and was upstaged to stage 4. Dr Bedekian gave me my options and I am going for the IPI and Temador they have started. Luckily my insurance is paying for it with a $100 copay on the Temador. I will have a IV for 90 minutes for the IPI and take the Temador one pill a day for four days at home. And repeat every three weeks. They will do scans at six weeks (two doses) to see if it is working and to go further or stop if no responce. 

I would love any thoughts, concerns or advice for these drugs and their side effects.

Thank You,

David

Login or register to post replies.

davidroten's picture
Replies 5
Last reply 8/16/2010 - 1:06am

Can anyone tell me about how long does it take to get over interferon treatments. We have finished our treatments and the wife seems to be as tired as ever. How long before side effects go away. Contact me at woodworker1239@hotmail.com

Login or register to post replies.

I just spoke to Sue and Todd, Jerry's wife and son, he remains in critical condition on a ventilator, with head and facial injuries.  He has not responded in 36 hours but is on a Sublimaze and Versed drip, so this is not unusual.  His vital signs, B/P, heart rate, are now stable.  He is in St. Anthony's Central, Denver CO.  Room 206, NICU (neuro intensive care).  

Jerry has always been a very faithful person....please keep our good friend and Melanoma buddy in your prayers.  

Thank you....

debbieVA

Login or register to post replies.

ErikaHouston2's picture
Replies 3
Last reply 8/16/2010 - 5:54pm

Of course I am paranoid of anything that is not quite normal...but have had back pain (dull ache) for a little over a week now that is not getting better. It also seems to move around (can't pinpoint exactly where it is). I was diagnosed with Stage I nearly 2 years ago, and had WLE. I have since recently had a Chest Xray as well as an abdominal CT scan (for unrelated GI bleeding). Would either of those scans show possible mets to spine? I am treated at MDA and trying to get in again to discuss this with the MD, just curious what others have felt that have had mets to spine. 

I'm just so paranoid as I have two small children. Feel free to tell me I am overreacting as well !

Login or register to post replies.

Sharon in Reno's picture
Replies 6
Last reply 8/16/2010 - 7:53pm

just cuz.....I just signed up to get Showtime so I can watch the "The Big C' this Monday night at 10pm with Laura Linny (did I spell that right?). Can't wait to see how they play this out. Grey's Anatomy was too dramatic lets see how a little comedy can help spread the word. I like laughter, has saved my sanity many times....we'll see.cool love ya, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Login or register to post replies.

skysar's picture
Replies 11
Last reply 8/16/2010 - 8:03pm

Spoke with Dr. Hwu at MDA yesterday regarding the IPI/Temodar trial.  If you are enrolled in this trial at MDA,  I would be interested in finding out how you are tolerating side effects and also handling travel if you don't live in Houston?

Thanks for your help.

Sue 

Stage IV, lung mets

Login or register to post replies.

Jim in Denver's picture
Replies 2
Last reply 8/16/2010 - 8:26pm

Showtime has the first episode on their website if you want a freee preview:

http://www.sho.com/site/video/brightcove/series/title.do?bcpid=69609888001&bclid=292231022001

Login or register to post replies.

Pages