My Trial Has Started!

This topic has 33 replies, 7 voices, and was last updated 11 years, 11 months ago by AllyNTAus.

Post

- May 18, 2012 at 5:04 pm
- Quote
Eileen L
Participant
The first day of my BRAF/MEK trial was yesterday! Everything went well. I essentially had to be at the hospital all day because they were drawing blood every 1-2 hours. Today I have to go back to get another blood draw as well as an EKG. I did receive a schedule of my appointments for the next eight weeks and I will be tied up 1-2 days a week, getting various tests and scans. Only one other all day session, however.

The first day of my BRAF/MEK trial was yesterday! Everything went well. I essentially had to be at the hospital all day because they were drawing blood every 1-2 hours. Today I have to go back to get another blood draw as well as an EKG. I did receive a schedule of my appointments for the next eight weeks and I will be tied up 1-2 days a week, getting various tests and scans. Only one other all day session, however. Most of the other appointments are half days!

I am very optimistic about these drugs, the response rates have been very good and I responded very well to a less potent drug for over four years. I get a scan at the end of June which will evaluate how I am doing. Until then, I am as usual trying to live my life to its fullest. We are going away for a few days today and I have brought with me a full array of sun protection, including sun protective clothing, wide brimmed hats, sunscreen, etc.

Will let everyone know how it goes.

Eileen L

Viewing 17 reply threads

Replies

- - May 18, 2012 at 6:17 pm
  - Quote
  Harry in Fair Oaks
  Participant
  Congrats Eileen! I wish you all the best. As you know, I'm on the GSK version of the BRAF/MEK trial. There was preliminary data from my trial released a couple of days ago showing great things, and GSK is now going to proceed with a Stage III trial of this "cocktail." And I'm betting on similar results from your study.
  
  Best wishes,
  
  Harry
  - May 20, 2012 at 4:55 am
    
    Quote
    Eileen L
    Participant
    
    Thanks for the update on your trial and your good wishes. I am feeling very hopeful about this drug combo as well!
    Eileen L
  - May 20, 2012 at 4:55 am
    
    Quote
    Eileen L
    Participant
    
    Thanks for the update on your trial and your good wishes. I am feeling very hopeful about this drug combo as well!
    Eileen L
  - May 20, 2012 at 4:55 am
    
    Quote
    Eileen L
    Participant
    
    Thanks for the update on your trial and your good wishes. I am feeling very hopeful about this drug combo as well!
    Eileen L
- - May 18, 2012 at 6:17 pm
  - Quote
  Harry in Fair Oaks
  Participant
  Congrats Eileen! I wish you all the best. As you know, I'm on the GSK version of the BRAF/MEK trial. There was preliminary data from my trial released a couple of days ago showing great things, and GSK is now going to proceed with a Stage III trial of this "cocktail." And I'm betting on similar results from your study.
  
  Best wishes,
  
  Harry
- - May 18, 2012 at 6:17 pm
  - Quote
  Harry in Fair Oaks
  Participant
  Congrats Eileen! I wish you all the best. As you know, I'm on the GSK version of the BRAF/MEK trial. There was preliminary data from my trial released a couple of days ago showing great things, and GSK is now going to proceed with a Stage III trial of this "cocktail." And I'm betting on similar results from your study.
  
  Best wishes,
  
  Harry
- - May 18, 2012 at 9:33 pm
  - Quote
  aldakota22
  Participant
  Good for you Eileen.May this trial be the answer you are looking for,so you can live life fully for a very long time.My prayers go with you. Al
  - May 20, 2012 at 4:56 am
    
    Quote
    Eileen L
    Participant
    
    Thanks!
    Eileen L
  - May 20, 2012 at 4:56 am
    
    Quote
    Eileen L
    Participant
    
    Thanks!
    Eileen L
  - May 20, 2012 at 4:56 am
    
    Quote
    Eileen L
    Participant
    
    Thanks!
    Eileen L
- - May 18, 2012 at 9:33 pm
  - Quote
  aldakota22
  Participant
  Good for you Eileen.May this trial be the answer you are looking for,so you can live life fully for a very long time.My prayers go with you. Al
- - May 18, 2012 at 9:33 pm
  - Quote
  aldakota22
  Participant
  Good for you Eileen.May this trial be the answer you are looking for,so you can live life fully for a very long time.My prayers go with you. Al
- - May 20, 2012 at 3:12 am
  - Quote
  NYKaren
  Participant
  Great news, Eileen. My thoughts and prayers are with you.
  Looking forward to hearing about that vacation too!
  karen
- - May 20, 2012 at 3:12 am
  - Quote
  NYKaren
  Participant
  Great news, Eileen. My thoughts and prayers are with you.
  Looking forward to hearing about that vacation too!
  karen
  - May 20, 2012 at 4:57 am
    
    Quote
    Eileen L
    Participant
    
    Thx Karen!
    Eileen L
  - May 20, 2012 at 4:57 am
    
    Quote
    Eileen L
    Participant
    
    Thx Karen!
    Eileen L
  - May 20, 2012 at 4:57 am
    
    Quote
    Eileen L
    Participant
    
    Thx Karen!
    Eileen L
- - May 20, 2012 at 3:12 am
  - Quote
  NYKaren
  Participant
  Great news, Eileen. My thoughts and prayers are with you.
  Looking forward to hearing about that vacation too!
  karen
- - May 20, 2012 at 4:31 am
  - Quote
  kylez
  Participant
  Eileen, congratulations on getting your first dose of BRAF/MEK (it sounds like you're that far into it, right?). Must be a big relief. Didn't realize the trial would be that intensive appointment-wise. Great job making all that happen!
  Kyle
- - May 20, 2012 at 4:31 am
  - Quote
  kylez
  Participant
  Eileen, congratulations on getting your first dose of BRAF/MEK (it sounds like you're that far into it, right?). Must be a big relief. Didn't realize the trial would be that intensive appointment-wise. Great job making all that happen!
  Kyle
  - May 20, 2012 at 4:51 am
    
    Quote
    Eileen L
    Participant
    
    Hi Kyle. The trial protocol is very intensive for the first eight weeks then eases up a bit. Missed you at the support group this week! Hope to see you soon. Eileen
  - May 20, 2012 at 4:51 am
    
    Quote
    Eileen L
    Participant
    
    Hi Kyle. The trial protocol is very intensive for the first eight weeks then eases up a bit. Missed you at the support group this week! Hope to see you soon. Eileen
  - May 20, 2012 at 4:51 am
    
    Quote
    Eileen L
    Participant
    
    Hi Kyle. The trial protocol is very intensive for the first eight weeks then eases up a bit. Missed you at the support group this week! Hope to see you soon. Eileen
  - May 20, 2012 at 4:52 am
    
    Quote
    Eileen L
    Participant
    
    P.S. I am out of Kaiser as of July 1!
  - May 20, 2012 at 4:52 am
    
    Quote
    Eileen L
    Participant
    
    P.S. I am out of Kaiser as of July 1!
  - May 20, 2012 at 4:52 am
    
    Quote
    Eileen L
    Participant
    
    P.S. I am out of Kaiser as of July 1!
- - May 20, 2012 at 4:31 am
  - Quote
  kylez
  Participant
  Eileen, congratulations on getting your first dose of BRAF/MEK (it sounds like you're that far into it, right?). Must be a big relief. Didn't realize the trial would be that intensive appointment-wise. Great job making all that happen!
  Kyle
- - May 21, 2012 at 12:29 am
  - Quote
  sandman
  Participant
  I have been on BRAF/MEK/GSK since March 7th. First scan 75% of the cancer is gone!! Make certain to take it exactly as directed, kick your nutrition up a notch and spend lots of time with G-D. You will do great, I am certain of it. Write me back with any questions and I will help if I can.
- - May 21, 2012 at 12:29 am
  - Quote
  sandman
  Participant
  I have been on BRAF/MEK/GSK since March 7th. First scan 75% of the cancer is gone!! Make certain to take it exactly as directed, kick your nutrition up a notch and spend lots of time with G-D. You will do great, I am certain of it. Write me back with any questions and I will help if I can.
- - May 21, 2012 at 12:29 am
  - Quote
  sandman
  Participant
  I have been on BRAF/MEK/GSK since March 7th. First scan 75% of the cancer is gone!! Make certain to take it exactly as directed, kick your nutrition up a notch and spend lots of time with G-D. You will do great, I am certain of it. Write me back with any questions and I will help if I can.
- - May 21, 2012 at 2:37 am
  - Quote
  AllyNTAus
  Participant
  Eileen, just offering you good wishes for your trial. The news late last week about the phase 1 results from the GSK BRAF/MEK trial were certainly very encouraging!
  
  Just to let you know what I am experiencing and hopefully by way of encouragment, I am three weeks into taking Dabrafenib on a compassionate access program (I failed the entry criteria for the BRAF/MEK trial because I had some pneumonitis at the time of screening), and I've had no real side effects apart from a couple of possible SCCs appearing around the place. I had a small palpable node (we think) in my right armpit just before starting Dabrafenib and within a week it had disappeared. A bunch of melanomas on my scalp which were growing and getting quite irritable have flattened and reduced in size. I will not know about my internal nodes (para-aortic, groin) until I get scanned in a couple of months but have everything crossed.
  
  I also lead an active outdoor lifestyle, and have ramped up the usual sun protection an extra notch, and have had no problems.
  
  All the best,
  
  Ally
- - May 21, 2012 at 2:37 am
  - Quote
  AllyNTAus
  Participant
  Eileen, just offering you good wishes for your trial. The news late last week about the phase 1 results from the GSK BRAF/MEK trial were certainly very encouraging!
  
  Just to let you know what I am experiencing and hopefully by way of encouragment, I am three weeks into taking Dabrafenib on a compassionate access program (I failed the entry criteria for the BRAF/MEK trial because I had some pneumonitis at the time of screening), and I've had no real side effects apart from a couple of possible SCCs appearing around the place. I had a small palpable node (we think) in my right armpit just before starting Dabrafenib and within a week it had disappeared. A bunch of melanomas on my scalp which were growing and getting quite irritable have flattened and reduced in size. I will not know about my internal nodes (para-aortic, groin) until I get scanned in a couple of months but have everything crossed.
  
  I also lead an active outdoor lifestyle, and have ramped up the usual sun protection an extra notch, and have had no problems.
  
  All the best,
  
  Ally
- - May 21, 2012 at 2:37 am
  - Quote
  AllyNTAus
  Participant
  Eileen, just offering you good wishes for your trial. The news late last week about the phase 1 results from the GSK BRAF/MEK trial were certainly very encouraging!
  
  Just to let you know what I am experiencing and hopefully by way of encouragment, I am three weeks into taking Dabrafenib on a compassionate access program (I failed the entry criteria for the BRAF/MEK trial because I had some pneumonitis at the time of screening), and I've had no real side effects apart from a couple of possible SCCs appearing around the place. I had a small palpable node (we think) in my right armpit just before starting Dabrafenib and within a week it had disappeared. A bunch of melanomas on my scalp which were growing and getting quite irritable have flattened and reduced in size. I will not know about my internal nodes (para-aortic, groin) until I get scanned in a couple of months but have everything crossed.
  
  I also lead an active outdoor lifestyle, and have ramped up the usual sun protection an extra notch, and have had no problems.
  
  All the best,
  
  Ally