Maxximom

wonderful news! can you share anymore info about the trials.. I am BRAF neg and having a severe diarrhea problem with my second Ippi infusion and on very high prednisone doses..so I doubt that they are going to let me get Ippi #3..so I am really hoping to get into a anti PD1 trial.. but because I live on Social security only..travel and living away from home..isn't something that I can afford..so I need to get into a trial near Columbus (2-3 hours away or so) or maybe near Washington where my son lives..so if you know any places that would fit..I would appreciate knowing. I checked clinical trial sites.. but they are not very up to date.

Good luck on your job search..I know how much you want/need to get your life back..it will be wonderful for you

Joan

wonderful news! can you share anymore info about the trials.. I am BRAF neg and having a severe diarrhea problem with my second Ippi infusion and on very high prednisone doses..so I doubt that they are going to let me get Ippi #3..so I am really hoping to get into a anti PD1 trial.. but because I live on Social security only..travel and living away from home..isn't something that I can afford..so I need to get into a trial near Columbus (2-3 hours away or so) or maybe near Washington where my son lives..so if you know any places that would fit..I would appreciate knowing. I checked clinical trial sites.. but they are not very up to date.

Good luck on your job search..I know how much you want/need to get your life back..it will be wonderful for you

Joan

wonderful news! can you share anymore info about the trials.. I am BRAF neg and having a severe diarrhea problem with my second Ippi infusion and on very high prednisone doses..so I doubt that they are going to let me get Ippi #3..so I am really hoping to get into a anti PD1 trial.. but because I live on Social security only..travel and living away from home..isn't something that I can afford..so I need to get into a trial near Columbus (2-3 hours away or so) or maybe near Washington where my son lives..so if you know any places that would fit..I would appreciate knowing. I checked clinical trial sites.. but they are not very up to date.

Good luck on your job search..I know how much you want/need to get your life back..it will be wonderful for you

Joan

Elaine.. I am so happy that your eyesight is coming back..that must be such a relief to you.I am sure that your liver teats will improve as well. I pray The surgery, Ippi that you had and radiation all combined will help get you to the NED status that you want..as we all do. I see Dr Kendra on Thursday.. but because I still have such severe Diarrhea and am on such a high dose of Prednisone.. My Ippy #3 wont happen.. and I wonder if they will ever let me on it again.. I hope they will wean me off of the Prednisone soon..so I can try it again.. if they will let me..that is the question. I am BRAF negative and don't have many other options..so it does worry me to have to give up the Ippy. Yes..family is everything we are both very fortunate to have these wonderful people in our lives..Good luck Elaine

Joan

Elaine.. I am so happy that your eyesight is coming back..that must be such a relief to you.I am sure that your liver teats will improve as well. I pray The surgery, Ippi that you had and radiation all combined will help get you to the NED status that you want..as we all do. I see Dr Kendra on Thursday.. but because I still have such severe Diarrhea and am on such a high dose of Prednisone.. My Ippy #3 wont happen.. and I wonder if they will ever let me on it again.. I hope they will wean me off of the Prednisone soon..so I can try it again.. if they will let me..that is the question. I am BRAF negative and don't have many other options..so it does worry me to have to give up the Ippy. Yes..family is everything we are both very fortunate to have these wonderful people in our lives..Good luck Elaine

Joan

Elaine.. I am so happy that your eyesight is coming back..that must be such a relief to you.I am sure that your liver teats will improve as well. I pray The surgery, Ippi that you had and radiation all combined will help get you to the NED status that you want..as we all do. I see Dr Kendra on Thursday.. but because I still have such severe Diarrhea and am on such a high dose of Prednisone.. My Ippy #3 wont happen.. and I wonder if they will ever let me on it again.. I hope they will wean me off of the Prednisone soon..so I can try it again.. if they will let me..that is the question. I am BRAF negative and don't have many other options..so it does worry me to have to give up the Ippy. Yes..family is everything we are both very fortunate to have these wonderful people in our lives..Good luck Elaine

Joan

Hi Bruce and Jackie.. I am so sorry that Jackie is having such a rough time..but at least they are keeping on top of things. Getting her the hydration she needs is very important..With all the 3 weeks of bad diarrhea that I had had..even in the hospital.. I manage not to dehydrate.. I was drinking like crazy to try and stay hydrated and they did not have to give me any fluids..just the IV steroids.I am on a much larger dose that Jackie 1200 mg prednisone orally..of course now I won't be able to get Ippy #3 on Thursday..if ever. The diarrhea still has not stopped and I still go at least 4-5 times a day..pure water..it is now 31/2 weeks of this..and now end in sight that I can see.Do they still plan on giving Jackie her Ippy on Monday..even though she is still on 60 mg of steroids? I was told that I have to be on 7 mg to get the ippy..also did the steroids STOP the diarrhea for Jackie or just slow things down? Wishing Jackie a happy Heinz 57 Birthday…gosh I would like to be 57 again

Joan

Hi Bruce and Jackie.. I am so sorry that Jackie is having such a rough time..but at least they are keeping on top of things. Getting her the hydration she needs is very important..With all the 3 weeks of bad diarrhea that I had had..even in the hospital.. I manage not to dehydrate.. I was drinking like crazy to try and stay hydrated and they did not have to give me any fluids..just the IV steroids.I am on a much larger dose that Jackie 1200 mg prednisone orally..of course now I won't be able to get Ippy #3 on Thursday..if ever. The diarrhea still has not stopped and I still go at least 4-5 times a day..pure water..it is now 31/2 weeks of this..and now end in sight that I can see.Do they still plan on giving Jackie her Ippy on Monday..even though she is still on 60 mg of steroids? I was told that I have to be on 7 mg to get the ippy..also did the steroids STOP the diarrhea for Jackie or just slow things down? Wishing Jackie a happy Heinz 57 Birthday…gosh I would like to be 57 again

Joan

Hi Bruce and Jackie.. I am so sorry that Jackie is having such a rough time..but at least they are keeping on top of things. Getting her the hydration she needs is very important..With all the 3 weeks of bad diarrhea that I had had..even in the hospital.. I manage not to dehydrate.. I was drinking like crazy to try and stay hydrated and they did not have to give me any fluids..just the IV steroids.I am on a much larger dose that Jackie 1200 mg prednisone orally..of course now I won't be able to get Ippy #3 on Thursday..if ever. The diarrhea still has not stopped and I still go at least 4-5 times a day..pure water..it is now 31/2 weeks of this..and now end in sight that I can see.Do they still plan on giving Jackie her Ippy on Monday..even though she is still on 60 mg of steroids? I was told that I have to be on 7 mg to get the ippy..also did the steroids STOP the diarrhea for Jackie or just slow things down? Wishing Jackie a happy Heinz 57 Birthday…gosh I would like to be 57 again

Joan

Hi Bruce and Jackie.. I am so glad that they were able to give Jackie her #3 Ippy infusion. I am happy that they did so while she was on so much Prednisone.. I was told that I would have to be on 7mg or less to get my #3 Ippy..IF they will even consider it after the severe diarrhea I am having ..I am not sure.. I AM sure that I want to get it as I think that it is my main option for the best way to try and beat this monster..I am BRAF negative and I don't have that many options. I must have been having a real brain fart when I wrote that I was on 1200mg of Pred.. I added a extra ).. I am on 120 mg and tonight they added another 20.. to try and help stop the diarrhea.. this has been going on for a month now..so I am pretty wiped out by now. I had blood work done today..and I have managed to keep myself well hydrated since I left the hospital last Tuesday and all my electrolytes are just fine.

I am glad that your job is more stable now..and that you won't have to travel//that will be nice for you and Jackie..a little peace of mind is a good thing. Renewing vows are lovely. My Husband and I renewed our vows on our 25th and 50 anniversaries and we would have been married for 60 years this past October..when he passed away. I am glad that Jackie had a nice Birthday.. Blizzards are yummy. It sounds like you Pastor is a wonderful person. My prayers are with you both

Joan

Hi Bruce and Jackie.. I am so glad that they were able to give Jackie her #3 Ippy infusion. I am happy that they did so while she was on so much Prednisone.. I was told that I would have to be on 7mg or less to get my #3 Ippy..IF they will even consider it after the severe diarrhea I am having ..I am not sure.. I AM sure that I want to get it as I think that it is my main option for the best way to try and beat this monster..I am BRAF negative and I don't have that many options. I must have been having a real brain fart when I wrote that I was on 1200mg of Pred.. I added a extra ).. I am on 120 mg and tonight they added another 20.. to try and help stop the diarrhea.. this has been going on for a month now..so I am pretty wiped out by now. I had blood work done today..and I have managed to keep myself well hydrated since I left the hospital last Tuesday and all my electrolytes are just fine.

I am glad that your job is more stable now..and that you won't have to travel//that will be nice for you and Jackie..a little peace of mind is a good thing. Renewing vows are lovely. My Husband and I renewed our vows on our 25th and 50 anniversaries and we would have been married for 60 years this past October..when he passed away. I am glad that Jackie had a nice Birthday.. Blizzards are yummy. It sounds like you Pastor is a wonderful person. My prayers are with you both

Joan

Hi Bruce and Jackie.. I am so glad that they were able to give Jackie her #3 Ippy infusion. I am happy that they did so while she was on so much Prednisone.. I was told that I would have to be on 7mg or less to get my #3 Ippy..IF they will even consider it after the severe diarrhea I am having ..I am not sure.. I AM sure that I want to get it as I think that it is my main option for the best way to try and beat this monster..I am BRAF negative and I don't have that many options. I must have been having a real brain fart when I wrote that I was on 1200mg of Pred.. I added a extra ).. I am on 120 mg and tonight they added another 20.. to try and help stop the diarrhea.. this has been going on for a month now..so I am pretty wiped out by now. I had blood work done today..and I have managed to keep myself well hydrated since I left the hospital last Tuesday and all my electrolytes are just fine.

I am glad that your job is more stable now..and that you won't have to travel//that will be nice for you and Jackie..a little peace of mind is a good thing. Renewing vows are lovely. My Husband and I renewed our vows on our 25th and 50 anniversaries and we would have been married for 60 years this past October..when he passed away. I am glad that Jackie had a nice Birthday.. Blizzards are yummy. It sounds like you Pastor is a wonderful person. My prayers are with you both

Joan