@gracie
Forum Replies Created
- Replies
-
-
- October 25, 2011 at 5:18 am
Hi,
I was on the ipi/placibo trial for stage 3 almost a year with hardly any side effects. Though I was more fatigued than usual and could not enjoy some spicy wings as often due to stomach sensitivity. I also noticed a hightened allergy sensitivity. My doc was sure I was getting the ipi, I did not think so, that is how mild my side effects were. Two tumors were found to have grown in the past year. The study was unblinded and I was definately getting the drug. I did not respond to the ipi but I do not regret my decision to do the ipi trial. I had a good year of as much health as I could hope for. Good luck to you and your daughter.
My advice is to make a decision on treatment that will allow the best possible quality of life then try to live as normal as possible.
My heart goes out to you both.
Gracie
-
- October 25, 2011 at 5:18 am
Hi,
I was on the ipi/placibo trial for stage 3 almost a year with hardly any side effects. Though I was more fatigued than usual and could not enjoy some spicy wings as often due to stomach sensitivity. I also noticed a hightened allergy sensitivity. My doc was sure I was getting the ipi, I did not think so, that is how mild my side effects were. Two tumors were found to have grown in the past year. The study was unblinded and I was definately getting the drug. I did not respond to the ipi but I do not regret my decision to do the ipi trial. I had a good year of as much health as I could hope for. Good luck to you and your daughter.
My advice is to make a decision on treatment that will allow the best possible quality of life then try to live as normal as possible.
My heart goes out to you both.
Gracie
-
- October 25, 2011 at 5:18 am
Hi,
I was on the ipi/placibo trial for stage 3 almost a year with hardly any side effects. Though I was more fatigued than usual and could not enjoy some spicy wings as often due to stomach sensitivity. I also noticed a hightened allergy sensitivity. My doc was sure I was getting the ipi, I did not think so, that is how mild my side effects were. Two tumors were found to have grown in the past year. The study was unblinded and I was definately getting the drug. I did not respond to the ipi but I do not regret my decision to do the ipi trial. I had a good year of as much health as I could hope for. Good luck to you and your daughter.
My advice is to make a decision on treatment that will allow the best possible quality of life then try to live as normal as possible.
My heart goes out to you both.
Gracie
-
- January 10, 2011 at 1:58 am
This is Gracie. I thought I would share results of Dr. appt. regarding rash. I saw my trial study team, including oncologist and viral doc. They were about ready to biopsy a patch of rash off neck when I mentioned I had had a sore throat over the holidays. They concluded that my immune system was overacting to virus due to possible ipi infusion which triggered histamines which caused rash on skin. I was prescribed topical cream with steroids and Zyrtec twice a day for 2 weeks. The rash had spread on cheeks before it started to subside. Zyrtec wipes me out so I quit using it but the cream is good. I would love to know that I am getting the ipi. Maybe? Thank you to those who responded.
-
- January 10, 2011 at 1:58 am
This is Gracie. I thought I would share results of Dr. appt. regarding rash. I saw my trial study team, including oncologist and viral doc. They were about ready to biopsy a patch of rash off neck when I mentioned I had had a sore throat over the holidays. They concluded that my immune system was overacting to virus due to possible ipi infusion which triggered histamines which caused rash on skin. I was prescribed topical cream with steroids and Zyrtec twice a day for 2 weeks. The rash had spread on cheeks before it started to subside. Zyrtec wipes me out so I quit using it but the cream is good. I would love to know that I am getting the ipi. Maybe? Thank you to those who responded.
-
- January 10, 2011 at 12:54 am
Oh Linda, I know exactly how you feel. The waiting and worrying and wondering how you will react and what your future holds is enough to kill anyone. I called for a biopsy result once just before a weekend so I would not have to wait till Monday. The nurse could hear the anxiety in my voice. The biopsy was not back yet and she gave me some advice: "Do not stop living while waiting. Live happier and harder while waiting because the cancer will do what it is going to do and you cannot change that." At first I thought she was heartless. After considering her words for a while, I called my sisters and we all went to the movies and dinner and refused to talk about melanoma for a night. Now whenever I await scan results, I pack my time with things and events that make me happy and busy. It is so therapeudic for me to feel like the old days and once again I realize that "cancer is IN my life, but it is NOT my life".
Melanoma can make you feel pretty lonely. I am glad we both found this site.
God bless you.
Gracie 3b
-
- November 8, 2011 at 9:20 pm
Jimmy, Thank you listening. I was unblinded the beginning of Sept. and I was receiving the ipi for a year. Mid Sept. I was introduced to IL2 for two rounds, 18 bags!!! Tumors grew everywhere.
Now I am offered the B Raf drugs. I always thought the B raf drugs ( which I am +) was the last tool in the shed for survival. Now I have to decide on the two offered B Raf drugs. I will ask doc about that combo you mentioned but I think he would have given me that option as well. Maybe I will have to fly somewhere.
What would you suggest with the three options I have been offered. The side affects of the trial drug seem very toxic but I want more time with my kids. Please give me your opinion. Do you know where that combo is offered and why it would be advantageous for me?
Thanks JimmyB, you seem to be the hero for many.
Gracie
-
- November 8, 2011 at 9:20 pm
Jimmy, Thank you listening. I was unblinded the beginning of Sept. and I was receiving the ipi for a year. Mid Sept. I was introduced to IL2 for two rounds, 18 bags!!! Tumors grew everywhere.
Now I am offered the B Raf drugs. I always thought the B raf drugs ( which I am +) was the last tool in the shed for survival. Now I have to decide on the two offered B Raf drugs. I will ask doc about that combo you mentioned but I think he would have given me that option as well. Maybe I will have to fly somewhere.
What would you suggest with the three options I have been offered. The side affects of the trial drug seem very toxic but I want more time with my kids. Please give me your opinion. Do you know where that combo is offered and why it would be advantageous for me?
Thanks JimmyB, you seem to be the hero for many.
Gracie
-
- November 8, 2011 at 9:20 pm
Jimmy, Thank you listening. I was unblinded the beginning of Sept. and I was receiving the ipi for a year. Mid Sept. I was introduced to IL2 for two rounds, 18 bags!!! Tumors grew everywhere.
Now I am offered the B Raf drugs. I always thought the B raf drugs ( which I am +) was the last tool in the shed for survival. Now I have to decide on the two offered B Raf drugs. I will ask doc about that combo you mentioned but I think he would have given me that option as well. Maybe I will have to fly somewhere.
What would you suggest with the three options I have been offered. The side affects of the trial drug seem very toxic but I want more time with my kids. Please give me your opinion. Do you know where that combo is offered and why it would be advantageous for me?
Thanks JimmyB, you seem to be the hero for many.
Gracie
-
- September 16, 2011 at 12:20 am
Thank you so much for your quick and qualified response. Am I to understand that having the ipi first then move to IL2 may possibly be a plus? It is facinating to me that some treatments work better for some than others and even a combination of therapies can be more effective than single therapies.
Now I totally understand why you make a decision and not look back. It could have the potential to drive you crazy with all the new breakthroughs… It is very exciting.
Again thank you so much for taking the time to send me research and encouragement.
Gracie
-
- September 16, 2011 at 12:20 am
Thank you so much for your quick and qualified response. Am I to understand that having the ipi first then move to IL2 may possibly be a plus? It is facinating to me that some treatments work better for some than others and even a combination of therapies can be more effective than single therapies.
Now I totally understand why you make a decision and not look back. It could have the potential to drive you crazy with all the new breakthroughs… It is very exciting.
Again thank you so much for taking the time to send me research and encouragement.
Gracie
-
