It's a green light for PDL!!!

pjune127

brea588 said:

Prayers for you
Tex I dont know much about the trials of meds or offer any suggestions to you other than I do pray for you everyday that a miracle will occur and you get the right meds to help you fight this bad bad cancer. My thoughts are with you and others on here going on the trial meds.

drug choices
I'd like to add something of importance, I think. For me, it took about 6 weeks to get into the PDL drug trial. That was with grease on the wheels. Most of the trials will not let you participate unless you are at least 4 weeks off any meds. This has been a huge issue for me. Sutent stopped working for me in June. Then I went on Inlyta for two months and it didn't work at all. After that was when we decided to go for the trial, so I haven't taken anything in 6 weeks. I dread the scans I will get on Tuesday. I'm terrified that everything has grown and spread since my last scan 6 weeks ago, but it is what it is. I really had some doubts about if I had done the right thing. But if I had gone on to another drug and then wanted into the trial, I would have had to go 4 weeks with no treatment. So if you want to be in a trial and want to move quickly you might do better to be off meds now instead of trying a new drug. Also, many trials limit the amount of previous drugs you have taken.

Hope this makes sense. I am a bit scattered right now. Off to Nashville tomorrow for the start of what I hope will be the end of this disease in my body!

Tex, I'm thinking of you and I do agree, use as much influence as you can to get and keep the ball rolling. Be persistent. I am lucky to have a son and husband who are my best advocates and a sharp oncologist who knows how to navigate the system. If I can help you in any way, just say the word.

XO Paula

jam66

foxhd said:

So HAPPY!!!!
)( ,that's you on the left after I gave you a big **** Fox hug!!!! We sure do share our experiences on this board and I'm smiling like you can't believe! I'm so happy! Do us proud Paula dear! Blow their minds with your positive attitude. AWESOME!!!!
Love you more! Fox.

Yay!
Go PJune! I can't wait to hear about how you'll blow them away! You're going to be awesome! Here's to positive thinking...

pjune127

pjune127 said:

drug choices
I'd like to add something of importance, I think. For me, it took about 6 weeks to get into the PDL drug trial. That was with grease on the wheels. Most of the trials will not let you participate unless you are at least 4 weeks off any meds. This has been a huge issue for me. Sutent stopped working for me in June. Then I went on Inlyta for two months and it didn't work at all. After that was when we decided to go for the trial, so I haven't taken anything in 6 weeks. I dread the scans I will get on Tuesday. I'm terrified that everything has grown and spread since my last scan 6 weeks ago, but it is what it is. I really had some doubts about if I had done the right thing. But if I had gone on to another drug and then wanted into the trial, I would have had to go 4 weeks with no treatment. So if you want to be in a trial and want to move quickly you might do better to be off meds now instead of trying a new drug. Also, many trials limit the amount of previous drugs you have taken.

Hope this makes sense. I am a bit scattered right now. Off to Nashville tomorrow for the start of what I hope will be the end of this disease in my body!

Tex, I'm thinking of you and I do agree, use as much influence as you can to get and keep the ball rolling. Be persistent. I am lucky to have a son and husband who are my best advocates and a sharp oncologist who knows how to navigate the system. If I can help you in any way, just say the word.

XO Paula

another trial
http://cancer.gov/clinicaltrials/search/view?cdrid=740810&version=HealthProfessional&protocolsearchid=10977053

angec

pjune127 said:

drug choices
I'd like to add something of importance, I think. For me, it took about 6 weeks to get into the PDL drug trial. That was with grease on the wheels. Most of the trials will not let you participate unless you are at least 4 weeks off any meds. This has been a huge issue for me. Sutent stopped working for me in June. Then I went on Inlyta for two months and it didn't work at all. After that was when we decided to go for the trial, so I haven't taken anything in 6 weeks. I dread the scans I will get on Tuesday. I'm terrified that everything has grown and spread since my last scan 6 weeks ago, but it is what it is. I really had some doubts about if I had done the right thing. But if I had gone on to another drug and then wanted into the trial, I would have had to go 4 weeks with no treatment. So if you want to be in a trial and want to move quickly you might do better to be off meds now instead of trying a new drug. Also, many trials limit the amount of previous drugs you have taken.

Hope this makes sense. I am a bit scattered right now. Off to Nashville tomorrow for the start of what I hope will be the end of this disease in my body!

Tex, I'm thinking of you and I do agree, use as much influence as you can to get and keep the ball rolling. Be persistent. I am lucky to have a son and husband who are my best advocates and a sharp oncologist who knows how to navigate the system. If I can help you in any way, just say the word.

XO Paula

Paula, I would like to wish
Paula, I would like to wish you much success and a very safe trip to Tn. I really feel like this will help you a great deal! I am praying for you!!

I know you are right about some trials not wanting you to have any meds at all, or at least to be free of meds for six weeks. But with TW the doctor/Oncologist mentioned to him it might be beneficial to start Votrient or Sutent to ward off possible new growth or to stablize him. I think if he waited another six weeks to get treatment it might not be the best thing for him as his growth is very rapid at the moment. I feel that it is best to try to get it stablized and possibly reduced while he starts the initiation for the possible trial of hopefully MDX. That way once he gets accepted he can wean off the meds for six weeks and hopefully by that time the growths would be smaller or at least sustained for a bit and would have bought him some time. That would be the option i would choose if it were me.

You on the other hand did the right thing with your treatment and you should not have any doubts. You seem to be thinking clearly and you took the right path. Please don't worry about the new scans. Perhaps the meds you did take had some advantage for you. But come what may, you are going to do much better now in this trial, I can feel it! This will all be past you! So go get your treatment tomorrow, keep your chin up. Laugh and have a good time and enjoy the trip. As hard as it is, try to push all of the angst aside. We want you well and will have it no other way! You are truly an inspiration to me! xxoo

TW, if you are reading. Please excuse me for discussing your situation, i feel it will be helpful to many if they should happen to stumble upon these threads. Of course, you make the final choice! It is so funny the amount of concern we all have for you isn't it? It is like you have your own posse! (slang for admirers) LOL And each and everyone of us is very sincere! All of you are heros in my book, all of you!

Texas_wedge

angec said:

Paula, I would like to wish
Paula, I would like to wish you much success and a very safe trip to Tn. I really feel like this will help you a great deal! I am praying for you!!

I know you are right about some trials not wanting you to have any meds at all, or at least to be free of meds for six weeks. But with TW the doctor/Oncologist mentioned to him it might be beneficial to start Votrient or Sutent to ward off possible new growth or to stablize him. I think if he waited another six weeks to get treatment it might not be the best thing for him as his growth is very rapid at the moment. I feel that it is best to try to get it stablized and possibly reduced while he starts the initiation for the possible trial of hopefully MDX. That way once he gets accepted he can wean off the meds for six weeks and hopefully by that time the growths would be smaller or at least sustained for a bit and would have bought him some time. That would be the option i would choose if it were me.

You on the other hand did the right thing with your treatment and you should not have any doubts. You seem to be thinking clearly and you took the right path. Please don't worry about the new scans. Perhaps the meds you did take had some advantage for you. But come what may, you are going to do much better now in this trial, I can feel it! This will all be past you! So go get your treatment tomorrow, keep your chin up. Laugh and have a good time and enjoy the trip. As hard as it is, try to push all of the angst aside. We want you well and will have it no other way! You are truly an inspiration to me! xxoo

TW, if you are reading. Please excuse me for discussing your situation, i feel it will be helpful to many if they should happen to stumble upon these threads. Of course, you make the final choice! It is so funny the amount of concern we all have for you isn't it? It is like you have your own posse! (slang for admirers) LOL And each and everyone of us is very sincere! All of you are heros in my book, all of you!

Paula
Thinking about you and willing the best possible start. We'll all be following your fortunes all the time and carrying you forward in our prayers.

angec

Texas_wedge said:

Paula
Thinking about you and willing the best possible start. We'll all be following your fortunes all the time and carrying you forward in our prayers.

Paula, thinking of you and
Paula, thinking of you and your treatment today. I hope it went very well and you are on your way home by now. Please rest up and let us know how you are when you feel up to it! I am feeling so good knowing you started your treatment today. All my best!!
Angela

alice124

angec said:

Paula, thinking of you and
Paula, thinking of you and your treatment today. I hope it went very well and you are on your way home by now. Please rest up and let us know how you are when you feel up to it! I am feeling so good knowing you started your treatment today. All my best!!
Angela

Piggybacking Ange & TW
Paula -

Waiting for update on how everything went today. Knowing you and your positive attitude, I'm betting it went great. But want to hear the words from you!!!

angec

alice124 said:

Piggybacking Ange & TW
Paula -

Waiting for update on how everything went today. Knowing you and your positive attitude, I'm betting it went great. But want to hear the words from you!!!

Alice, Paula left a post on
Alice, Paula left a post on a new link. I was going to post on it but it won't let me at the moment. She said she got 20 mgs of the PDL? That sounds like an awful lot. I thought the norm was brought down to 4 mgs now or even 2 mgs. But 20 Mgs. and she didn't have to stay there overnight. She had a slight fever. Try to see if you can get to her post if you desire. It is right on top of the board! xxoo

pjune127

angec said:

Alice, Paula left a post on
Alice, Paula left a post on a new link. I was going to post on it but it won't let me at the moment. She said she got 20 mgs of the PDL? That sounds like an awful lot. I thought the norm was brought down to 4 mgs now or even 2 mgs. But 20 Mgs. and she didn't have to stay there overnight. She had a slight fever. Try to see if you can get to her post if you desire. It is right on top of the board! xxoo

angec~
Indeed I got 20 mgs. But I am getting ONLY the PDL, not in combination with Votrient or Avastin or any other drug. I think those trials have lower doses of PDL. According to my source at Duke (my son's friend who is an oncologist) they are using the 20 mg. dosage on people with colorectal cancer in a Genentech trial there. And no, since I wasn't one of the first 10 participants in the expansion group, I did NOT have to stay for continuous blood draws overnight. It was really a "piece of cake". My fever is down now and I feel pretty well.

angec

pjune127 said:

angec~
Indeed I got 20 mgs. But I am getting ONLY the PDL, not in combination with Votrient or Avastin or any other drug. I think those trials have lower doses of PDL. According to my source at Duke (my son's friend who is an oncologist) they are using the 20 mg. dosage on people with colorectal cancer in a Genentech trial there. And no, since I wasn't one of the first 10 participants in the expansion group, I did NOT have to stay for continuous blood draws overnight. It was really a "piece of cake". My fever is down now and I feel pretty well.

WHEW! What a relief to know
WHEW! What a relief to know you are doing well!! I couldn't comment on the other post for some reason... Paula, I can say I am so happy for you!! It is great that 20 mgs was so tolerable by your body! I really hope and pray that they are able to speed mdx to the general public. I know a lot of people can benefit from it! The fever was a good sign that your body began to fight. It is working! I know you are smiling from ear to ear and so are we!! I think this protocol was made just for you!! xxoo Enjoy your weekend!!

Texas_wedge

angec said:

WHEW! What a relief to know
WHEW! What a relief to know you are doing well!! I couldn't comment on the other post for some reason... Paula, I can say I am so happy for you!! It is great that 20 mgs was so tolerable by your body! I really hope and pray that they are able to speed mdx to the general public. I know a lot of people can benefit from it! The fever was a good sign that your body began to fight. It is working! I know you are smiling from ear to ear and so are we!! I think this protocol was made just for you!! xxoo Enjoy your weekend!!

Provisional plan
Like Ange, Paula, I'm hoping you're having an enjoyable weekend, and also that it's lit up with a feeling of success from Nashville.

I now have a goodish idea of what makes sense as treatment for my own present condition. Ange and Clara, you've endorsed the view that my Wife and I had arrived at, namely that I don't have time to wait for treatment and, as pointed out by Paula, trials take time to set up, so I don't have the luxury of waiting for something appealing to turn up. The new tumour that had already grown from undetectable to 5 cm. in not very many weeks has been making its presence known increasingly unequivocally. Any significant delay now would open the door to further rapid growth and the likelihood that much of the lost ground would prove to be irrecoverable.

The options here, on our NHS, are very limited for my case basically a choice between Sutent and Votrient. That's a no-brainer, particularly after reading the latest, which David so kindly sent me, which suggests that V. will now take over from S. as the gold standard for first line treatment.

The other possibility is HDIL2. I have an onc appt for Friday and an appt at Nuclear Medicine the previous day for a Muga scan which shuld settle the hash, I hope, as to whether I'm fit and well enough to handle HDIL2 at 70.

I won't countenance chemo since I want to keep my good immune system in shape. Yesterday I vindicated my sobriquet on the 9th hole at Carnoustie ("Railway"). A strong wind had me well short despite 2 respectable shots. I then got "up and down", as golfers call it, with 2 putts - the first of 78 yards, the second a three feet one, to make par.

This morning I managed 10,0000 metres of rowing in a time within a minute of my pb for this year. Moreover, the cancer pain vanished when I started rowing and this remained the case for many hours. So, I'm well pleased with my current level of fitness and want to keep it that way. So, at the moment it looks like either IL2 or Votrient asap.