Buddy0513

Thanks for posting this Ed. That is interesting how they mention that Inflixamab tends to work usually in one dose, but what I find a bit unusual is right away they put my mom on high prednisone. Inflixamab was never really mentioned as an option…my mom has been seeing a fill in doctor since her melanoma specialist has been out of the office these past few days (of course right around the time this all started!), but I am definitely going to have her ask about this for future reference.

Melissa

Thanks for posting this Ed. That is interesting how they mention that Inflixamab tends to work usually in one dose, but what I find a bit unusual is right away they put my mom on high prednisone. Inflixamab was never really mentioned as an option…my mom has been seeing a fill in doctor since her melanoma specialist has been out of the office these past few days (of course right around the time this all started!), but I am definitely going to have her ask about this for future reference.

Melissa

Thanks for posting this Ed. That is interesting how they mention that Inflixamab tends to work usually in one dose, but what I find a bit unusual is right away they put my mom on high prednisone. Inflixamab was never really mentioned as an option…my mom has been seeing a fill in doctor since her melanoma specialist has been out of the office these past few days (of course right around the time this all started!), but I am definitely going to have her ask about this for future reference.

Melissa

It was just scary to have this happen all of a sudden. My neighbor back home called me in a panic, saying she had never seen my mom look/feel this bad ever before and we have known her for 20+ years. Her doctor keeps telling her all these side effects are a good thing, but it just leads to a panic because when her organs started getting very low/dangerous values you begin to think the worst! They said they won't release her from the hospital until they are 100% sure about everything, but so far no infections just constant potassium/fluids to help keep things going.

Glad to hear you are almost done with the combination! Hopefully your liver enzymes will be within the correct range soon and you'll be able to get the last dose. It is interesting how you are slotted to have 4 doses plus the nivo for 2 years, not sure why my mom was ordered to have more doses, especially when she had nivo after finishing the 4th dose. As we all have said here the itch and all is a good thing, my mom is proof of that! Just hang in there. I will keep you in my thoughts as I do all of the warriors on this board. 

Thanks again for all of the information. I really appreciate everything you have said/done, I know you have followed my moms story since the start. If this ever happens again in the future (which I sure hope it doesn't!) at least I know not to have a full-blown panic and just to give things some time. 

Melissa

It was just scary to have this happen all of a sudden. My neighbor back home called me in a panic, saying she had never seen my mom look/feel this bad ever before and we have known her for 20+ years. Her doctor keeps telling her all these side effects are a good thing, but it just leads to a panic because when her organs started getting very low/dangerous values you begin to think the worst! They said they won't release her from the hospital until they are 100% sure about everything, but so far no infections just constant potassium/fluids to help keep things going.

Glad to hear you are almost done with the combination! Hopefully your liver enzymes will be within the correct range soon and you'll be able to get the last dose. It is interesting how you are slotted to have 4 doses plus the nivo for 2 years, not sure why my mom was ordered to have more doses, especially when she had nivo after finishing the 4th dose. As we all have said here the itch and all is a good thing, my mom is proof of that! Just hang in there. I will keep you in my thoughts as I do all of the warriors on this board. 

Thanks again for all of the information. I really appreciate everything you have said/done, I know you have followed my moms story since the start. If this ever happens again in the future (which I sure hope it doesn't!) at least I know not to have a full-blown panic and just to give things some time. 

Melissa

It was just scary to have this happen all of a sudden. My neighbor back home called me in a panic, saying she had never seen my mom look/feel this bad ever before and we have known her for 20+ years. Her doctor keeps telling her all these side effects are a good thing, but it just leads to a panic because when her organs started getting very low/dangerous values you begin to think the worst! They said they won't release her from the hospital until they are 100% sure about everything, but so far no infections just constant potassium/fluids to help keep things going.

Glad to hear you are almost done with the combination! Hopefully your liver enzymes will be within the correct range soon and you'll be able to get the last dose. It is interesting how you are slotted to have 4 doses plus the nivo for 2 years, not sure why my mom was ordered to have more doses, especially when she had nivo after finishing the 4th dose. As we all have said here the itch and all is a good thing, my mom is proof of that! Just hang in there. I will keep you in my thoughts as I do all of the warriors on this board. 

Thanks again for all of the information. I really appreciate everything you have said/done, I know you have followed my moms story since the start. If this ever happens again in the future (which I sure hope it doesn't!) at least I know not to have a full-blown panic and just to give things some time. 

Melissa

Deb,

First I want to say thank you for finding all of that information! I just got finished reading through all of it. 

It seems she is more of a "Grade 4", or at least close to it…which still makes me a bit nervous, but I her and I both feel better with the idea that she is at the hospital now getting the care she needs 24/7. As for her treatments, I am not really sure where it will go next. It was just sad since we had finally made a step forward, now it feels as if we made about 20 backwards!

I saw you mentioned the probiotic in the other thread, but it was one I wasn't familiar with. How many strains/billion do you take? My mom currently takes 8 billion, 5 strains, I was trying to get her on one that is stronger, but she has been very nervous about it since when we started with the large tumors and it changed her bowel movements even more than what the tumor was influencing.

I hope your treatments are going well. I check in on this site from time to time, but rarely have time to follow and post since school/work started again. I appreciate your response. Just in full blown panic mode over this!

Deb,

First I want to say thank you for finding all of that information! I just got finished reading through all of it. 

It seems she is more of a "Grade 4", or at least close to it…which still makes me a bit nervous, but I her and I both feel better with the idea that she is at the hospital now getting the care she needs 24/7. As for her treatments, I am not really sure where it will go next. It was just sad since we had finally made a step forward, now it feels as if we made about 20 backwards!

I saw you mentioned the probiotic in the other thread, but it was one I wasn't familiar with. How many strains/billion do you take? My mom currently takes 8 billion, 5 strains, I was trying to get her on one that is stronger, but she has been very nervous about it since when we started with the large tumors and it changed her bowel movements even more than what the tumor was influencing.

I hope your treatments are going well. I check in on this site from time to time, but rarely have time to follow and post since school/work started again. I appreciate your response. Just in full blown panic mode over this!

Deb,

First I want to say thank you for finding all of that information! I just got finished reading through all of it. 

It seems she is more of a "Grade 4", or at least close to it…which still makes me a bit nervous, but I her and I both feel better with the idea that she is at the hospital now getting the care she needs 24/7. As for her treatments, I am not really sure where it will go next. It was just sad since we had finally made a step forward, now it feels as if we made about 20 backwards!

I saw you mentioned the probiotic in the other thread, but it was one I wasn't familiar with. How many strains/billion do you take? My mom currently takes 8 billion, 5 strains, I was trying to get her on one that is stronger, but she has been very nervous about it since when we started with the large tumors and it changed her bowel movements even more than what the tumor was influencing.

I hope your treatments are going well. I check in on this site from time to time, but rarely have time to follow and post since school/work started again. I appreciate your response. Just in full blown panic mode over this!