Please Help With Some Info!!!!

My sister has stage IV metastatic melanoma, she was part of a clinical trial using carboplatin/taxol. The results on the scans after 4 rounds were not good and they took her out of the trial. She is now working with a doctor in Pittsburgh, who is recommending a Phase I trial called TK1258. Can anyone tell me if they have heard of this?? any advice?? what has worked for any of you?? this message board is full of so much information and wonderful, loving people. Thanks for ANY information or insight on this cancer/treatment and may God Bless you all!!!

 

On 1/13/2008 Cathbean wrote:

My sister has stage IV metastatic melanoma, she was part of a clinical trial using carboplatin/taxol. The results on the scans after 4 rounds were not good and they took her out of the trial. She is now working with a doctor in Pittsburgh, who is recommending a Phase I trial called TK1258. Can anyone tell me if they have heard of this?? any advice?? what has worked for any of you?? this message board is full of so much information and wonderful, loving people. Thanks for ANY information or insight on this cancer/treatment and may God Bless you all!!!

Oh my God hunny,

 It is not working becouse they are "trials" Get her to a regular oncologest. She needs old fashion chemo and radiation. I am getting ready to under go my second cycle of chemo and just finished 6 rounds of radiation for stage iv melenoma. We have a 65% chance of living 10 years. Please do something. I fear you will not have her for long.

Her primary melanoma was NOT skin melanoma...it was rectal. 

She has been to many Oncologists, including Sloan Kettering and the one she is currently in is The University of Pittsburgh Medical Center.  These are highly recommended Doctors.  They all concur that standard chemo and radiation DO NOT work on mucosal melanoma.  Was your melanoma on the skin?? I believe that is a whole different ball game, if you will.  And I understand this is much more serious and difficult to treat.  I just want someone to help us with our options, as they are not clear and concise.  I have read so many postings here where they are in clincial trials, and would love to hear from someone that has the same kind of melanoma (which is rare) and which trials or treatments have had success for them and which ones have not.  Time is not on our side.  

I pray your treatment is successful - God Bless!

  

 

My mother had Stage 4 mucosal melanoma with the primary in the rectum, as you describe.  There are only these experimental treatments available.  She was on AZD 6??? but that did nothing, so she switched to Gleevec.  That was also unsuccessful but you need the right gene mutation, which she did not have (we later discovered).  She passed away within 4 1/2 months from her diagnosis. 

She was at Mt. Sinai Miami Beach and Memorial Sloan Kettering in NYC.  These experimental programs can be found nationwide in various settings.  Another drug to look at is Sutent.  There are several more and I haven't kept up with this since her passing in July.

Also, Dana Farber Cancer Center in Boston has a free service that helps you find experimental programs.  I think the lady's name was Marianne.  She is very helpful in finding Phase I, II and III experimental programs. 

I wish you all the best.  I wish that I had better news to tell you but don't give up hope.

 

On 1/24/2008 Stefhef wrote:

My mother had Stage 4 mucosal melanoma with the primary in the rectum, as you describe.  There are only these experimental treatments available.  She was on AZD 6??? but that did nothing, so she switched to Gleevec.  That was also unsuccessful but you need the right gene mutation, which she did not have (we later discovered).  She passed away within 4 1/2 months from her diagnosis. 

She was at Mt. Sinai Miami Beach and Memorial Sloan Kettering in NYC.  These experimental programs can be found nationwide in various settings.  Another drug to look at is Sutent.  There are several more and I haven't kept up with this since her passing in July.

Also, Dana Farber Cancer Center in Boston has a free service that helps you find experimental programs.  I think the lady's name was Marianne.  She is very helpful in finding Phase I, II and III experimental programs. 

I wish you all the best.  I wish that I had better news to tell you but don't give up hope.

I'm so sorry to hear about your mother!!!  This really is a  horrible disease - I know.  My sister was diagnosed in April '06 - she currently has mets in her liver and lung as well as progression of disease in her rectum, she is on pain meds (oxycodone) for the pain.  She will be traveling to Pittsburgh on Monday - and beginning a phase II clinical trial TK 1258...her doctor is Dr. Kirkwood.

 She also has the right blood to be in a vaccine trial if this doesn't work.  We are praying for a miracle!!

 If you don't mind me asking....how did the cancer spread in your mom? I know once it takes off it really can spread quickly... my sisters PET came back with "no change" this time.  And she hasn't had treatments in over 6 weeks!!! I will be glad when she gets to PA,...I've heard of the meds that you mentioned, but the doctors over her case really think her best bet is this trial!  It's so hard to know what to do!  We just have to have faith in  the doctors - and pray this works!  I won't give up hope!!! 

 

My mother's mucosal melanoma started in her rectum and had spread to her liver by the time she was diagnosed (age 67).  It was inoperable.  You have to go with what your doctors recommend - there is no one right answer and remember, all of these drugs are experimental.  They still have an awful lot of research to do and their idea of success is that you remain progression-free for some time.  They have no cures for Stage 4 mucosal melanoma.  Just a lucky few who somehow manage to overcome it.  I would keep on trying and pray that your loved one is one of those lucky few.

Yes, the progression was quite rapid but mostly in her liver.  She was pretty much fine one week and within 7 days, she was gone.  I guess, in some sense, it was better that way.

I wish you the best of luck in PA.  I hope it goes well!  Write any time with questions.  I haven't been on here for awhile but I have checked the alert box when their is a response.

Hi Cathbean, 

I read the first reply to your post and felt compelled to create an account so I could write to you.  The last thing you need right now is more fear - melanoma provides plenty of that without anyone fanning the flames. 

To give you some background:  My wife is stage IV with many mets throughout her body.  We have spent thousands of hours researching melanoma treatments and have visited specialists all over the country.  

There is only one FDA approved treatment for MM stage IV - Interluekin-2.  It is a challenging treatment but can have durable (long lasting) success for some patients.  Additionally there are roughly 120 clinical trials for melanoma stage IV.  Many of them are promising.  

Your sister is pursuing a promising biotherapy that was recommended to us by Dr. Kirkwood at University of Pittsburgh.  He is considered to be one of the top melanoma specialist in the world (Is your sister working with him??). 

There is an incredible melanoma specific website MPIP.  Google it.  The bulletin board is a patient discussion page where many people with your sisters diagnosis share treatment experience.  I have found it to be invaluable.

 

Best Wishes! 

 

 

thank you Hope4u!!

My sister leaves today to begin that treatment with Dr. Kirkwood!  We are praying for success!!

I wish you all the best with the Interleukin 2 - if you wouldn't mind letting me know how it is working - I would really appreciate it.  If this receptor inhibitor doesn't work we will know within (I believe) 8 weeks - she does qualify for a vaccine study, does your wife? I think you have to have the right blood type for that, which my sister does.

 Your encouragement was much appreciated! 

Stay strong and keep the faith!!!! 

 

Cathbean

 

 

Hi, My daughter had a different kind of cancer and I got into making kombucha mushroom tea. Cultures can be found on the internet. During this time I met an older gal that used to have melanoma on her upper chest. She said she swathed it daily and consumed approx. one quarter cup of the tea daily and her melonoma went away. I am currently working with an older guy that is starting treatment and seems to be improving. The kombucha mushroom tea is a living thing and is supposed to be the number one immune system builder. I hope this works for you.

 

On 1/26/2008 Hope4u wrote:

Hi Cathbean, 

I read the first reply to your post and felt compelled to create an account so I could write to you.  The last thing you need right now is more fear - melanoma provides plenty of that without anyone fanning the flames. 

To give you some background:  My wife is stage IV with many mets throughout her body.  We have spent thousands of hours researching melanoma treatments and have visited specialists all over the country.  

There is only one FDA approved treatment for MM stage IV - Interluekin-2.  It is a challenging treatment but can have durable (long lasting) success for some patients.  Additionally there are roughly 120 clinical trials for melanoma stage IV.  Many of them are promising.  

Your sister is pursuing a promising biotherapy that was recommended to us by Dr. Kirkwood at University of Pittsburgh.  He is considered to be one of the top melanoma specialist in the world (Is your sister working with him??). 

There is an incredible melanoma specific website MPIP.  Google it.  The bulletin board is a patient discussion page where many people with your sisters diagnosis share treatment experience.  I have found it to be invaluable.

 

Best Wishes! 

 

 

Hi Hope4u,

I am wondering how your wife is doing with her treatment? (IL-2)

 My sister had to end her treatment in Pittsburgh due to the side affects of such a high dose, she also had a blockage and needed a colostomy, which set us back 5 weeks.  She is now recovered from that procedure and they want to put her back in that trial (as she only had 7 days with it the first time).  She left today to start the treatment.  Her health seems to have declined alot in the past few weeks, she is very weak, very uncomfortable, she has much more anxiety than before (taking meds for that as well as pain meds), and we are not sure she is going to be able to tolerate this treatment, but there really are no other options for her right now.  I often wonder how the IL-2 would have worked for her, back when she was strong enough to endure it!

I hope your wife is having success with her treatments!!!
~Cathbean