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
Anonymous's picture
Replies 4
Last reply 8/11/2011 - 8:10pm
Replies by: Anonymous, hope4cure1

Hi,

One of the older post,stated Dr.O'day was coming back to Angeles clinic at the end of July.

Anyone have an update on his return?

 

Thanks

John

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 8/11/2011 - 9:23pm

Ok - I know this is probably a dumb question and has been discussed before but I thought I'd ask.

Right now I have regular CT scans like most folks.  Things have been clear!  My ? would be would a CT scan pick up a melanoma tumor on the skin.  For example, if a mole was bad - would it pick it up?  I typically only have CT scan of chest, abdomin, pelvis.  My primary was on my back.  Or would I need a PET scan to pick up things like that?  what would I look for if I had sub q's?  Lots to get your head around with all of this! 

I know there is a size limit to what they can pick up.  I have a derm appt again in a few weeks so I suppose I can ask then.

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

Login or register to post replies.

dutchhook's picture
Replies 5
Last reply 8/11/2011 - 1:39pm

Ok, so my wife went on the B RAF medication about 35 days ago. We saw a complete turnaround in energy, appetite and conditions starting in about 3 days. We went back to Chicago for her 28 day review, and tumors are shrinking, she's eating again, and did simple things like went to the grocery store, went to a family reunion and out to Applebees. I know it doesn't sound like much, but she hadn't done any of those things in months. She even drove her car for the first time.

As far as side effects, luckily, there haven't been many, like some others have reported here. She got a pretty good sunburn the other day, even after using 50 or 100 spf, hats, etc... but that is getting better now. She might be a little sore or tired, but we're not sure if it's the meds or not.

She did get 3 new spots, which they biopsied last Friday. We're pretty sure they're the squamous cell spots they told us about.

A new spot a few months ago was pretty depressing, now new spots are "Psssh, no big deal" (Knock on wood) We know this isn't a permanent cure, but she's going to make the most of her time here.

We are so happy with her local Onc, Dr Amatruda in Minnesota and her "study" Doctor, Dr Hallmeyer in Chicago. Teri got a big hug from Dr Hallmeyer last Friday, who was excited to hear of a(nother) success story.

As I'm writing this, I'm acutely aware of others who have not found an answer, temporary or permanent, and I still empathize with them. Especially those without the B RAF mutation.  So if it's possible, I'd like to share some good news with those who need it and share some hope for those who are still searching.

Steve & Teri

Login or register to post replies.

ShellyB's picture
Replies 4
Last reply 8/11/2011 - 4:25pm

hi,

i'm really keen to get as much information on ipi as possible. Would like to hear from anyone that was on it, and as to how it worked for them, or not. and what kind of side effects to expect. I am starting on Temodal next week for two cycles and then on ipi, as i'm in ireland, ipi cannot be administered as a first line drug, so i have to give Temodal a try, maybe this might work without ipi.

any info on this subject would be great, i had a look on the website but all that seems to stick out is the serious side effect, and serious they seem

 

thanks

michelle

Login or register to post replies.

Pam D's picture
Replies 2
Last reply 8/11/2011 - 7:49pm
Replies by: Pam D, DeniseK

Has anyone switched from traditional to pegylated interferon shots?

Login or register to post replies.

MariaH's picture
Replies 5
Last reply 8/11/2011 - 9:26pm

Dave started radiation on 8/9 due to the size of the tumors in his chest.  He will do 10 days of it prior to IL-2 on 8/29.  Has anybody had radiation to this area, and if so, what were your side effects?  So far he has said it's a "piece of cake".  Other than being a little tired and not much of an appetite, he feels good.  I'm just wondering what to watch for.

Thanks!

Login or register to post replies.

JerryfromFauq's picture
Replies 7
Last reply 8/11/2011 - 11:04am

A newcomer came   into chat  from Denver and needs help for a friend that has ocular melanoma that has gone to her lever.  She has failed TACE and Ipi.   She had allergic reaction to the yervoy so is on prednisone right now.  She has dropped weight and lost hair & appeqrs ok outwardly but has a new tumor and another one getting larger.

She needs help with reearch. 

I have some questions about what type mutations have been discovered in this type melanoma and what other trials, drugs might help. 

Thank you for helping this lady.  I hope to get to visit them when ic Colorado during the net couple of months.    My dial p is too slow and I am running   out of time to get reaedy to leave for Colorado.

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

Login or register to post replies.

tricialeigh44's picture
Replies 4
Last reply 8/11/2011 - 10:07pm

My Mom has finished 3 rounds of IL2 in Buffalo and is now moving on to IPI. I am just wondering if we can somehow pool all of the melonama treatments available in Canada vs the US. What have been the most effective treatments.

My mum has stage 4 melanoma that has not spread past her lungs.

Thanks in advance

Tricia

Login or register to post replies.

My dad's Dr told him he has Stage IV melanoma on his thigh. The lab staged it from a biopsy. I was under the impression that you needed a PET Scan or MRI to stage it correctly. Can he be accurately stage from a biopsy? He's scheduled to have it operated on in 2 weeks. He's 81 years old. Please help me to understand if this can be accurately staged this way, if you can. Thank You

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 8/11/2011 - 10:52am

My dad's Dr told him he has Stage IV melanoma on his thigh. The lab staged it from a biopsy. I was under the impression that you needed a PET Scan or MRI to stage it correctly. Can he be accurately stage from a biopsy? He's scheduled to have it operated on in 2 weeks. He's 81 years old. Please help me to understand if this can be accurately staged this way, if you can. Thank You

Login or register to post replies.

Jan in OC's picture
Replies 7
Last reply 8/12/2011 - 3:23pm

Well, we made it to Houston...staying in a hotel and all our stuff is on the U-haul in the parking lot!!  Evidently we arrived at the busiest time for moving and have not found a place to rent yet.  Was hoping to get it done before Dirk's MD Anderson visits...oh well....I'm sure we will have a home soon!

I have to say, our experience at MD is light years different from UCLA.  It used to take weeks to get an appointment for any tests there.  

We went in yesterday morning, saw Dr. "Papa", and in the afternoon went to get an MRI.  Got the call today,  tomorrow they have scheduled ECHO, Complete Pulmonary Function Test, and CT.  

Friday, its back to meet a Dr in targeted therapy and Dr Papa again!!  Then we will decide which treatment plan to go with.  I even met our Patient Advocate and and spoke to the Social Worker yesterday. Never spoke to anyone at our last place.  

We are still in a washout period from the E-7080, so it seems like new spots appear every day.  Dirk gets tired easily, but is very excited about the team approach and liked Dr. Papadoupolis!!  We are hoping for good things.

Jan (formerly in OC, now a texan, LOL), wife to Dirk

Login or register to post replies.

NYKaren's picture
Replies 6
Last reply 8/11/2011 - 4:30pm

Had my 4th infusion of Ipi two weeks ago tomorrow.  I was originally supposed to have a pet next week & see Dr. Wolchuk the week after.  So far, only 1 small piece of mel has flaked off & I've been noticing what looks like more small somethings--mels? satellites? traveling from my mel cluster (on temple, almost to ear) toward my eye.  We're only talking about an inch, 1.5 tops.  Now there are one or 2 almost in the corner of my eye.  When Dr. W first saw them, 4 weeks ago, there were only 2 or 3, and he said it might be discoloration from radiation and that he still thought my "disease was stable".  For my last infusion, he wasn't there.  I had a colleague (and friend) take a photo Monday, and I emailed it to Dr. Wolchuk & Dr. Halpern.  Dr. W's office called 10 minutes later and said that he had seen the pic & my PET was moved up to today and I'm seeing him @ 2:00 tomorrow.  

The Fellow got on the phone and said that even though the ipi might be working (and they don't really know--I guess will know more tomorrow--maybe) it sometimes takes so long to work that other problems might develop, and that it might be time to "revisit" my treatment.  She also mentioned that I'll be seeing the surgeon.  When, I don't know--I imagine soon.  How they can do surgery so close to my eye is beyond me.

 My rash/itch is gone.  does that mean the ipi stopped working?  I'm so glad that my stomach side effects are still there.  How bizzare is that?

I went to another doctor, completely unrelated, yesterday, and he said, "oh, stage 3, you're ok."  I pulled my hair back and showed him and he went white as a ghost.  I guess I shouldn't hate people--I should hate their ignorance, but it's hard.

Sorry if I'm rambling, I've kept this inside since Monday and I feel like I'm gonna burst if I don't get it out.

Comments/suggestions/advice welcome.  I'll try to post tomorrow after visit--I'm taking my husband with me.

thanks,

karen

Don't Stop Believing

Login or register to post replies.

The amazing new gene therapy for leukemia that can be used for other cancers, hopefuly melanoma:

 

http://www.cbsnews.com/stories/2011/08/10/health/main20090800.shtml 

CBS Evening News August 10, 2011

Login or register to post replies.

Are you living with melanoma? News from yesterday suggests that the FDA’s decision on investigational drug vemurafenib (Zelboraf) may come as early as this week or next.  The Melanoma Research Foundation may receive requests from newspaper or television reporters to speak with patients who have either been on the treatment or whose treatment decisions might be affected by the FDA’s decision.  If you have taken this drug or may consider this treatment if it comes to market, and you are willing to share your story, please take a moment to fill out the following survey: http://www.surveymonkey.com/s/V92M8SX.

Many thanks!

Shelby - MRF

Login or register to post replies.

Pages