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
beatricefromPARIS's picture
Replies 3
Last reply 9/30/2010 - 8:06pm

Scans from head to belly show no change or perhaps minor tumor decrease after 6 months interferon at dose of 10 M shot, 3 times a week.

Brain stays clear (in real and metaphorically!)

BeatricefromParis

Mets lungs, liver, bones, heart

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 9/28/2010 - 7:23pm
Replies by: killmel

Hi Bob,

 

I saw you post regarding you sayiing:  "Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors."

I am interested in knowing more about the VEGF clinical trial. Would you know the gov clinical trial number for this VEGF trial or any information/link where I can read about this trial.

You mentioned that if this trial failed then you would do IPI.

I am just curious why your doctor just does not put you on IPI???

There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial  which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??

What does your doctor say about IPI???

Thanks for replying

 

Good Luck

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 20
Last reply 1/23/2011 - 2:30pm

Hi IPI Warrior

 

I read MPIP posts & some IPI warriors have remain stable & unfortuanately some have progressed. Cannot find any post from IPI warriors in REMISSION and NED?????

IPI has got alot of press at ASCO & in the news getting approved by FDA. I read 1 in 3 respond BUT is the response "remission"???

This might be a stupid question but how good is this drug??? Has any reports indicated this drug has brought IPI users into remission??? or has this drug just prolonged progression??? What exactly does "RESPONSE" to this drug mean to the IPI warrior

It wouuld be interesting if IPI warriors posted their disease status since taking IPI.  I wonder the results of IPI users who have finished treatment. Just a thought?? It would be encouraging for IPI users to see some IPI warriors that are NED after taking IPI.

Hope we see  many posts from IPI warriors that are NED!

Login or register to post replies.

skysar's picture
Replies 5
Last reply 9/28/2010 - 3:12pm
Replies by: ipi in DC, ValinMtl, lhaley, Jim in Denver, Anonymous

I haven't posted in a couple of weeks due to an acute bronchitis infection which flared up while I was at MDA the day after my first treatment.  Ended up in the ER on Sunday and was given fluids and 750 mg of Levaquin.  Developed a rash a couple of days into the antibiotic so we are not sure if it is from IPI or  the Levaquin.  My ENT switched meds to Doxycycline and my rash has progressed.  So for the last 2 weeks I have been very uncomfortable and my next treatment is Wednesday!!!

MDA did give me an antihistamine, which didn't do anything.  I have been taking oatmeal baths, using Sarna lotion, Benadryl, etc.  Today I am trying Doxepin, which MDA suggested.  I have been reading all the posts regarding IPI and the side effects have been mild.  I am hoping this rash is due to the antibiotic, which has happened to me in the past with a different antibiotic and not IPI.

My neutrophils did drop but not enough to not take the Temador.  Yeah!!!

 

Sue

Hotlanta

Login or register to post replies.

 Read this(caution not a good read if you are feeling at all nauseas)

 http://news.yahoo.com/s/ap/20100927/ap_on_he_me/us_med_costly_cancer_drugs

Insert Generic Inspirational Motto Here

Login or register to post replies.

jtheisen29's picture
Replies 6
Last reply 10/18/2010 - 5:27pm
Replies by: Anonymous, Marshipops, stillhopeful, Phil S, jtheisen29, Tim--MRF

Hi all!

I am new to the board but find it to be a great asset and so many people who are supportive. I myself do not have melanoma but my twin sister was diagnosed with stage 3b Sept of 09 while 5months pregnant. Fast forward a year and she has a beautiful healthy baby boy (and 6 year old) and currently N.E.D with 51 more shots of interferon left. I am confused by the IPI trial and have gone onto clinicaltrials.org and read the trial descriptions but honestly it is like a different lanuage to me:) I see many posting who are stage 3 considering the trial. My question is what are the qualifications for a stage 3 to partake in the trial. My sisters melanoma was surgically resected, and was only offered interferon or watch and wait. Right now there is no evidence of diesease and we are praying that it continues. After everything that I have read about interferon I am interested if there is anything else that she could enroll in to raise her chance of no recurrance. Her tumor thickness was 3mm and ulcerated with microscopic involvment in 1 node. So I don't know if she would be unable to to do any other trials because there is no measurable diease. Any info that could be shared to help me understand this medical mumbo jumbo would be great!

 

Thanks,

Jessica Theisen http://www.caringbridge.org/visit/saramcevilly1

Login or register to post replies.

glewis923's picture
Replies 4
Last reply 9/27/2010 - 2:12am

Dear Friends:    I went to MDAnderson and met with Dr. Hwu (the female one).  She was very nice and knowledgeable, but I'm still a little lost and confused:

1-  After 1 year of I-feron can I be eligible for IPI  OR B-Raf/PLX  IF my numerous lung nodules are "small"??  largest was 6mm?    ie.:  CAN I get ANY treatment without "histological Proof" that nodules are indeed m.mel.?     Dr. Hwu has said that until nodules/tumors grow to at least near 1cm. in size, an accurate biopsy/VATS/or even "open chest" surgery cannot be done......and NO treatment administered until this is done.

2-  She suggested that the nodules could be sarcoidosis.  Anyone else with 8 or more nodules- some growing- been "luckey" enough for this to be the case?

Thanks in advance for any suggestions or first hand simular experience.  I read y'alls' post every night and hope & pray for all.  This disease sure does suck and I realize I'm blessed to be here.....I just feel like i'm being told I've gotta wait till further progression before i can be treated.

Love, Hope, and Peace-

Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

Login or register to post replies.

Hi everyone,

  My WLE of 6/1 remains unhealed and my oncology surgeon is talking with  plastic surgeon for a possible skin graft...not sure this is the answer as I am not sure anything will heal well in the area....seems like my leg is "trashed" after my ILP of one year ago. Meaning of course the heavy duty chemo treatmetn I got burned out small blood vessels and nerves so oxygenation and blood flow to the area may be constricted. I am thinking of seeing a homeopathic physician and am seeking a second opinion from a surgeon in my own area that I knwo well and who knows me, who did my SNB and first WLE 4 years ago. I have thought about the hyperbaric chamber treatment but havent asked. My oncology surgeon said he knows some folks doing seaweed applications but I wonder about that with me as I am allergic to iodine and betadine. I am also latex sensitive so many bandages also affect my skin negatively. Just wondering what other folks have tried when wounds dont heal or heal very slowly. If course to top it all I have a dark mole that just popped up right near the unhealed wound that has a little lump under it...more melanoma? I told the surgeon about it but as he and I both think I will be seen in one to two weeks he wasnt jumping up and down about getting me right in there......UGH!!!!!

Thanks for listening and if you have any ideas give me a shout. Thanks!!

Vermont _Donna stage 3a

Login or register to post replies.

Lori C's picture
Replies 13
Last reply 9/28/2010 - 8:29pm

I am worried about Will (as always, but more right now than usual).  He had chemo (taxol & carboplatin) on Tuesday.  His appetite has not been great on this treatment but he's done okay.  He had a brain scan (clean, thankfully) because he'd had a few bouts of vomiting.  He was nauseated this morning and has been retching on and off all day.  Very weak and tired as a result.  I have a call into his nurse's voice mail.

I'm giving him sips of ginger ale, etc.  We'll try toast later.

Is this possibly a chemo side effect?

Login or register to post replies.

Jim in Denver's picture
Replies 5
Last reply 9/25/2010 - 12:14pm

Hi to All of Jerry's Many Friends from MPIP,

I had the good fortune to spend over two hours today with Jerry in Colorado Springs.  He has been in rehab there for two weeks, after two weeks in Denver receiving emergency and acute care for an accident from horseback riding, when he was thrown, dragged, and kicked by the horse he was riding. I was not able to see him in Denver, and waited until he had recovered enough to have a visitor.  I was supposed to get together with Jerry before all this happened, and I have been following the updates on the OTBB about his progress.  It has been a long 4 weeks, but I have good news to share with you about Jerry.  I asked him if it was ok to post, and he wants to say hello to all of you.

Let me tell you - this guy is absolutely amazing!!!  Hearing more from Jerry and his daughter Tanya about the accident and the aftermath, it is miraculous he is here at all, but the story is even better than that.   His surgeon has done a really good job of putting his face back together but couldn't quite make him resemble Brad Pitt....lol.  Jerry is very lucid, and up and around, and will be discharged tomorrow - I think he is too much for them to handle :)  His vision is off somewhat and a bit blurry, which is understandable when you consider both his eye sockets were crushed, but has improved dramatically.  He thinks that he can get new glasses that will help correct his vision, and one of the nurses there is setting him up with her opthamalogist.  His short term memory is a bit fuzzy, but Tanya says he is improving every day, and she had been an almost constant presence throughout the last month who has made a world of diference in his recovery. 

I told Jerry that he has great support from his many friends here, and that so many of you would like to know how he is doing.  He wants you to know that he is so grateful for your support and good wishes, and that it has made a real difference to him.  Tanya has read him your posts, although he has not been able to get his emails yet due to some computer problems, whihc he hope to fix soon.  Jerrry has an indominable spirit and great sense of humor, which is no surprise to those of us fortunate enough to know him.  Jerry has been a wonderful source of support, information, and wisdom to me from the very beginning of my posting on MPIP six months ago, as he has also been for many of you over a long period of time.  So I wanted him to know, from all of us who know him (and those who have not yet had the pleasure) that we miss him on here and wish for the day to come very soon when he returns.  Jerry will be back for sure, and I want you to know that fact - you cannot keep this man down!  I thanked him for his being there for me, and for all of us, just as we are and will be here for him - and a big hug to go with that thought.

Of course, we covered a lot of subjects over the time we had, most of which does not deserve to be recounted here.  I have always been impressed with is knowledge about our disease, sharp mind, and quick wit, but I also now have experienced his caring, compassionate, and helping attitude towards others.  He really feels that this board has been a community to which he belongs and should contribute - and has.  Jerry told me some of the history of MPIP, as well as a number of stories.  Anyway, I felt that I was lucky to be able to finally meet such a special guy who is a true inspiration and as resiliant as they come - Tanya said there is no such thing as an "ex-Marine", and I think Jerry is living proof of that!

Jerry will move to Tayna's house tomorow and stay in Colorado for a while, perhaps weeks, before deciding what to do next.  Hopefully he will be giving you his own update soon!

Best Wishes,

Jim in Denver

 

 

Login or register to post replies.

Hi to All of Jerry's Many Friends from MPIP,

I had the good fortune to spend over two hours today with Jerry in Colorado Springs.  He has been in rehab there for two weeks, after two weeks in Denver receiving emergency and acute care for an accident from horseback riding, when he was thrown, dragged, and kicked by the horse he was riding. I was not able to see him in Denver, and waited until he had recovered enough to have a visitor.  I was supposed to get together with Jerry before all this happened, and I have been following the updates on the OTBB about his progress.  It has been a long 4 weeks, but I have good news to share with you about Jerry.  I asked him if it was ok to post, and he wants to say hello to all of you.

Let me tell you - this guy is absolutely amazing!!!  Hearing more from Jerry and his daughter Tanya about the accident and the aftermath, it is miraculous he is here at all, but the story is even better than that.   His surgeon has done a really good job of putting his face back together but couldn't quite make him resemble Brad Pitt....lol.  Jerry is very lucid, and up and around, and will be discharged tomorrow - I think he is too much for them to handle :)  His vision is off somewhat and a bit blurry, which is understandable when you consider both his eye sockets were crushed, but has improved dramatically.  He thinks that he can get new glasses that will help correct his vision, and one of the nurses there is setting him up with her opthamalogist.  His short term memory is a bit fuzzy, but Tanya says he is improving every day, and she had been an almost constant presence throughout the last month who has made a world of diference in his recovery. 

I told Jerry that he has great support from his many friends here, and that so many of you would like to know how he is doing.  He wants you to know that he is so grateful for your support and good wishes, and that it has made a real difference to him.  Tanya has read him your posts, although he has not been able to get his emails yet due to some computer problems, whihc he hope to fix soon.  Jerrry has an indominable spirit and great sense of humor, which is no surprise to those of us fortunate enough to know him.  Jerry has been a wonderful source of support, information, and wisdom to me from the very beginning of my posting on MPIP six months ago, as he has also been for many of you over a long period of time.  So I wanted him to know, from all of us who know him (and those who have not yet had the pleasure) that we miss him on here and wish for the day to come very soon when he returns.  Jerry will be back for sure, and I want you to know that fact - you cannot keep this man down!  I thanked him for his being there for me, and for all of us, just as we are and will be here for him - and a big hug to go with that thought.

Of course, we covered a lot of subjects over the time we had, most of which does not deserve to be recounted here.  I have always been impressed with is knowledge about our disease, sharp mind, and quick wit, but I also now have experienced his caring, compassionate, and helping attitude towards others.  He really feels that this board has been a community to which he belongs and should contribute - and has.  Jerry told me some of the history of MPIP, as well as a number of stories.  Anyway, I felt that I was lucky to be able to finally meet such a special guy who is a true inspiration and as resiliant as they come - Tanya said there is no such thing as an "ex-Marine", and I think Jerry is living proof of that!

Jerry will move to Tayna's house tomorow and stay in Colorado for a while, perhaps weeks, before deciding what to do next.  Hopefully he will be giving you his own update soon!

Best Wishes,

Jim in Denver

 

 

Login or register to post replies.

makedoandmend's picture
Replies 8
Last reply 9/25/2010 - 7:46pm

I posted a few weeks back about just being diagnosed.  I had an ulcerated primary on my calf at a breslow depth of 9mm and satelitte lesion beneath/next to the primary.  Pet Scan came back NED or "unremarkable" as it says in the report.   So that leaves me a stage 3 with a surgery on October 4th where they will do a sentinal node biospy and wide incision.  My onc gave me three options. 1) watch and wait 2) high dose interferron followed by the home injections 3) stage three ipilimumab clinical trial (he says the trial will have a placebo, but what about compassionate use?  So my question is what are the positives and negatives of 2 and 3.  Do I even need treatment?  The nodes in my groin are ned so I don't know if I need treatment. On the other hand the primary was very deep and ulcerated which leaves me with some bad percentages.  Also I'm thinking that melanoma is easier to fight at stage 3. Why not start the battle now rather than waiting till its at stage iv.   Any insight would be much appreciated. I've learned a lot over the last few weeks, hopefully I can contribute more on the board.  The strength and knowledge I've gotten from this board is invaluable. Thanks!
-pat on long island

Login or register to post replies.

bill58's picture
Replies 16
Last reply 9/27/2010 - 9:37am

I am livid.

I was downgraded from stage IIIC to stage IV 2 weeks ago.  I previously tested positive for the BRAF mutation and the doctor wanted to enroll me in the trial.

I filled out the paperwork with tears flowing from my eyes from the news.  I was knowledgeable enough on the the trial protocol from my own research and reading other postings here to know that one of the qualifications was the failure of a previous treatment, or as the protocol states "failure of at least one prior standard of care regimen ".  The only treatment I had so far was 2 surgeries and radiation treatment, all of which were known to the "Melanoma" specialist.  i asked him if the Radiation qualified me and he said yes.  When I called today to check up on the paperwork to make sure things were flowing through the proper channels, I asked one of the assistants to confirm what treatments would qualify me for the study.

She got back to me and confirmed that radiation treatment did NOT qualify me for the treatment.  She also informed me that they had another person in the same situation as myself and that person was starting the DTIC/Dacarbazine injection today and just so he was on a biochem/immuno treatment.  After that fails, he can apply for the BRAF treatment after waiting the 30 day prior treatment window.  They must have known about this qualification a week ago to get that person scheduled for the shot.  Why they did not inform me at the same time, i do not know.  Why they did not inform me when I called on Monday, I do not know.  I guess I need to check out the side effects from that treatment, but I dont have too many choices.

That is what they want to do with me.  I will see the doctor next Thursday, 3 weeks after my last Pet Scan, start me on a single injection of Dacarbazine and after the 30 days I would be able to start the BRAF trial.  I could say I never heard of such a crazy thing, but I have seen other things like that on this board and other things that are even more crazy. 

I just wanted to let everyone know that their doctors don't know everything.  You would think they knew the protocols of the clinical trials that they were running, but I guess that is too much to ask.

I was planning on getting second opinions by Dr Kaufmann and Dr Gajewski, but I don't know if I can fit that into my  schedule without using up my remaining few vacation days.  I need to save 3 days for the day long blood tests every hour once I actually start the BRAF trial.

Enough for my rant for now.

Bill

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

Login or register to post replies.

dian in spokane's picture
Replies 23
Last reply 3/8/2011 - 7:16am

NED! I'm so pleased to say that I have had another great scan result. The only thing that showed up was the old lung issues (not mm) and a lump on my shin where I tripped over the fiddle case and crashed to the ground last month. They clearly pegged it as an injury not a metastes.

I'm headed off to Las Vegas to celebrate!

Thanks for all your prayers and well wishes.

Yall have a great weekend!

 

dian

Login or register to post replies.

Nebr78's picture
Replies 2
Last reply 9/24/2010 - 7:00pm
Replies by: washoegal, jag

If you have Melanoma and want to treat it, you better not have Heart Disease.  Tried  to get into a Clinical Trial, no luck.  Dr. says he can't treat it with anything strong that may stop growth because of the bad heart.  And it is bad so no arguement there.  I will not have any more Dr. appt. or CT Scans so that is that. Maybe I can find some un-orthodox treatment that will help. This will be my last post.

Login or register to post replies.

Pages