@5374brian
Forum Replies Created
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- April 17, 2014 at 9:15 pm
I recommend asking as man questions as possible. Keep a notebook handy because no one can remember everything that comes up daily before you see your doctor. Keep notes on all the visits. We learned also to ask before you start a treatment could this disquality me for another treatment later. For example some clinical trials will want you to be 90 days clean before you can start. The main thing to remember is you will never make a wrong decision on what you decide to do. That one statement made such an impact on me that it helped everyday. Before that i used to wonder " what if" or maybe i should have taken curtain #2. No one could or would have been able to say well the other road would have been better and no one has that crystal ball. So make your best executive decision on what you can learn by asking questions and taking notes and then dont look back keep running and fighting. The last thing is to never loose site of is " quality of life " . Enjoy each day and good luck.
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- April 17, 2014 at 9:15 pm
I recommend asking as man questions as possible. Keep a notebook handy because no one can remember everything that comes up daily before you see your doctor. Keep notes on all the visits. We learned also to ask before you start a treatment could this disquality me for another treatment later. For example some clinical trials will want you to be 90 days clean before you can start. The main thing to remember is you will never make a wrong decision on what you decide to do. That one statement made such an impact on me that it helped everyday. Before that i used to wonder " what if" or maybe i should have taken curtain #2. No one could or would have been able to say well the other road would have been better and no one has that crystal ball. So make your best executive decision on what you can learn by asking questions and taking notes and then dont look back keep running and fighting. The last thing is to never loose site of is " quality of life " . Enjoy each day and good luck.
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- April 17, 2014 at 9:15 pm
I recommend asking as man questions as possible. Keep a notebook handy because no one can remember everything that comes up daily before you see your doctor. Keep notes on all the visits. We learned also to ask before you start a treatment could this disquality me for another treatment later. For example some clinical trials will want you to be 90 days clean before you can start. The main thing to remember is you will never make a wrong decision on what you decide to do. That one statement made such an impact on me that it helped everyday. Before that i used to wonder " what if" or maybe i should have taken curtain #2. No one could or would have been able to say well the other road would have been better and no one has that crystal ball. So make your best executive decision on what you can learn by asking questions and taking notes and then dont look back keep running and fighting. The last thing is to never loose site of is " quality of life " . Enjoy each day and good luck.
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- April 17, 2014 at 8:55 pm
My research on the IpI is once you stop taking the infusions the side effects will subside. that in no way indicates that the IPI is not working. IpI is meant to kick start the immunity system, bridge gaps in the immunity system, and cause some inflammation of the tumors so the immunity system will start attacking and fighting the disease on its own. Your doctor can recommend things for the thyroid. Good luck and stay strong and positive. Continue to fight and win.
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- April 17, 2014 at 8:55 pm
My research on the IpI is once you stop taking the infusions the side effects will subside. that in no way indicates that the IPI is not working. IpI is meant to kick start the immunity system, bridge gaps in the immunity system, and cause some inflammation of the tumors so the immunity system will start attacking and fighting the disease on its own. Your doctor can recommend things for the thyroid. Good luck and stay strong and positive. Continue to fight and win.
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- April 17, 2014 at 8:55 pm
My research on the IpI is once you stop taking the infusions the side effects will subside. that in no way indicates that the IPI is not working. IpI is meant to kick start the immunity system, bridge gaps in the immunity system, and cause some inflammation of the tumors so the immunity system will start attacking and fighting the disease on its own. Your doctor can recommend things for the thyroid. Good luck and stay strong and positive. Continue to fight and win.
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- July 16, 2013 at 3:15 pm
Denise
Ask your Doctor about your hemoglobin level as you get close to the PD1 trail. I believe Merck has a minimum of 9. Merck will ask that you wait till week 4 if you need a transfusion to re test levels. We were turned down at first and had to appeal with a final decision of the 4 weeks. BMS will let you have one the day prior to their blood work. Just something to keep in mind as you are making plans and decisions.
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- April 17, 2014 at 8:40 pm
POW…Well i have not been around for awhile now. Keri passed on Oct.26,2013. She had an incredible quality of life even up to Oct 23. On Oct 23 we made a trip to Moffit for a visit, went to lunch and went to dinner. On the 24th she just didnt seem right. We called Hospice to come visit. They said with all the rallys that we wittnessed over the months that she probably stood a great chance to shake what was not right. This would not be the case. I have been torn since then about it all. I know that all the discomfort, pain, that she was having is no more but I still look daily for her calls on where we are going to dinner ( we went out every night ) and what time will i be home. I sometimes feel selfish but then I think she won. She is in no more pain and can smile everyday. thanks for all the encouragement that you gave.
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- April 17, 2014 at 8:40 pm
POW…Well i have not been around for awhile now. Keri passed on Oct.26,2013. She had an incredible quality of life even up to Oct 23. On Oct 23 we made a trip to Moffit for a visit, went to lunch and went to dinner. On the 24th she just didnt seem right. We called Hospice to come visit. They said with all the rallys that we wittnessed over the months that she probably stood a great chance to shake what was not right. This would not be the case. I have been torn since then about it all. I know that all the discomfort, pain, that she was having is no more but I still look daily for her calls on where we are going to dinner ( we went out every night ) and what time will i be home. I sometimes feel selfish but then I think she won. She is in no more pain and can smile everyday. thanks for all the encouragement that you gave.
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- April 17, 2014 at 8:40 pm
POW…Well i have not been around for awhile now. Keri passed on Oct.26,2013. She had an incredible quality of life even up to Oct 23. On Oct 23 we made a trip to Moffit for a visit, went to lunch and went to dinner. On the 24th she just didnt seem right. We called Hospice to come visit. They said with all the rallys that we wittnessed over the months that she probably stood a great chance to shake what was not right. This would not be the case. I have been torn since then about it all. I know that all the discomfort, pain, that she was having is no more but I still look daily for her calls on where we are going to dinner ( we went out every night ) and what time will i be home. I sometimes feel selfish but then I think she won. She is in no more pain and can smile everyday. thanks for all the encouragement that you gave.
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- July 16, 2013 at 3:15 pm
Denise
Ask your Doctor about your hemoglobin level as you get close to the PD1 trail. I believe Merck has a minimum of 9. Merck will ask that you wait till week 4 if you need a transfusion to re test levels. We were turned down at first and had to appeal with a final decision of the 4 weeks. BMS will let you have one the day prior to their blood work. Just something to keep in mind as you are making plans and decisions.
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- July 16, 2013 at 3:15 pm
Denise
Ask your Doctor about your hemoglobin level as you get close to the PD1 trail. I believe Merck has a minimum of 9. Merck will ask that you wait till week 4 if you need a transfusion to re test levels. We were turned down at first and had to appeal with a final decision of the 4 weeks. BMS will let you have one the day prior to their blood work. Just something to keep in mind as you are making plans and decisions.
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