Hurry up and Wait

msccolon

mc1717 said:

Finally!!!
Takked to Oncologist and Radiation Doc today. Treatments will begin on 9/22/08. Next week I will have a port put in and "measured" for radiation treatments.

Oncologist said I will get 5FU using an infusion pump for 5 weeks. Radiation will also be for 5 weeks. After surgery (in December) another 5 weeks of chemo.

The Dr went over possible side effects. I would like to hear from any of you that had 5FU infusion. What were some of your side effects and what did you do.

Anything i need to know about the pump itself? Dr said once it is attached they will go over how to handle it, but again I would like to hear from you. Things like showering with it, sleeping, sex and anything else I need to know.

Thanks again, You all have been so helpful!

Mickey

Finally!
Mickey, so glad you finally got to speak with your onc and radiation doc! You have to be feeling better now that you know the plan of attack! I had the 48 hour pump. Couldn't shower with it because i couldn't use the water proof tape on my skin, but no other issues. I did sleep with my head slightly raised (used an extra pillow) while the pump was attached, I just seemed to sleep better. My father did have the continuous pump for a month and he had very few side effects. He also couldn't shower with his pump, but sponge baths work well and he didn't have many issues. Didn't have any problems going out in public with it either, although it would have been more "blendable" if this were the 80s when EVERYONE was wearing a fanny pack! As far as sex issues, I'll let the guys handle that one! Take care and God be with you as you enter the battle. Mary

usakat

msccolon said:

Finally!
Mickey, so glad you finally got to speak with your onc and radiation doc! You have to be feeling better now that you know the plan of attack! I had the 48 hour pump. Couldn't shower with it because i couldn't use the water proof tape on my skin, but no other issues. I did sleep with my head slightly raised (used an extra pillow) while the pump was attached, I just seemed to sleep better. My father did have the continuous pump for a month and he had very few side effects. He also couldn't shower with his pump, but sponge baths work well and he didn't have many issues. Didn't have any problems going out in public with it either, although it would have been more "blendable" if this were the 80s when EVERYONE was wearing a fanny pack! As far as sex issues, I'll let the guys handle that one! Take care and God be with you as you enter the battle. Mary

80's Fashion?
Funny comment, Mary...I suppose one could always complete the ensemble with a pair of parachute pants or acid wash jeans, high top tennis shoes, neon shirt and a snappy pair of Wayfarer sunglasses. Remember the days when Michael Jackson was more than some strange dude with a fondness for monkeys and Sgt. Pepper jackets with massive shoulder pads? Gosh, now I'm hearing Journey and Police songs in my head...and remembering the days of big hair and Aqua Net. Hey, the bigger the hair, the closer to God...I believed it...lived it...

taraHK

mc1717 said:

Finally!!!
Takked to Oncologist and Radiation Doc today. Treatments will begin on 9/22/08. Next week I will have a port put in and "measured" for radiation treatments.

Oncologist said I will get 5FU using an infusion pump for 5 weeks. Radiation will also be for 5 weeks. After surgery (in December) another 5 weeks of chemo.

The Dr went over possible side effects. I would like to hear from any of you that had 5FU infusion. What were some of your side effects and what did you do.

Anything i need to know about the pump itself? Dr said once it is attached they will go over how to handle it, but again I would like to hear from you. Things like showering with it, sleeping, sex and anything else I need to know.

Thanks again, You all have been so helpful!

Mickey

onward!
So glad you finally got to meet with your doctors, and that you have a plan and firm dates. Onward!

Side effects for 5FU (and all chemo cocktails) of course vary from person to person. For me, the side effects were really not too bad. Some fatigue, some nausea. There are a lot of different anti-nausea medications out there -- if one doesn't work, try others, if you can. I had some hair thinning but only thinning. Some cramping/diarrhea -- not too bad. I can't comment on the pump as I didn't have that (long story).

I'm sorry to say that, for me, the side effects of the radiation were actually tougher than those of the chemo. Radiation can also cause fatigue -- the side effects tend to start about 2 weeks after the radiation does, and then last about 2 weeks after it ends. (While the radiation continues to work - yea!). I had diarrhea and also (pardon me being so blunt) a kind of skin burn around the area (my bottom). Like a bad sunburn. Going to the toilet was very painful at times. I have very pale skin and burn easily so my symptoms may have been worse than other people. Be sure to talk to the nurses, radiation technicians, etc if you have these symptoms (or any others). They can recommend some creams -- i had a steroid cream for a little while which helped. I was told not to use any cream without discussing with the nurse/technician first as some can interfere with the radiation. I also used lukewarm sitz baths. With something that stained my bottom purple which was weird and bizarre. Gotta laugh sometimes!

I am sorry to share these negative side effects with you -- we are all different and of course I hope you have as smooth a ride as possible.

Best wishes,
Tara

taraHK

mc1717 said:

Finally!!!
Takked to Oncologist and Radiation Doc today. Treatments will begin on 9/22/08. Next week I will have a port put in and "measured" for radiation treatments.

Oncologist said I will get 5FU using an infusion pump for 5 weeks. Radiation will also be for 5 weeks. After surgery (in December) another 5 weeks of chemo.

The Dr went over possible side effects. I would like to hear from any of you that had 5FU infusion. What were some of your side effects and what did you do.

Anything i need to know about the pump itself? Dr said once it is attached they will go over how to handle it, but again I would like to hear from you. Things like showering with it, sleeping, sex and anything else I need to know.

Thanks again, You all have been so helpful!

Mickey

onward!
So glad you finally got to meet with your doctors, and that you have a plan and firm dates. Onward!

Side effects for 5FU (and all chemo cocktails) of course vary from person to person. For me, the side effects were really not too bad. Some fatigue, some nausea. There are a lot of different anti-nausea medications out there -- if one doesn't work, try others, if you can. I had some hair thinning but only thinning. Some cramping/diarrhea -- not too bad. I can't comment on the pump as I didn't have that (long story).

I'm sorry to say that, for me, the side effects of the radiation were actually tougher than those of the chemo. Radiation can also cause fatigue -- the side effects tend to start about 2 weeks after the radiation does, and then last about 2 weeks after it ends. (While the radiation continues to work - yea!). I had diarrhea and also (pardon me being so blunt) a kind of skin burn around the area (my bottom). Like a bad sunburn. Going to the toilet was very painful at times. I have very pale skin and burn easily so my symptoms may have been worse than other people. Be sure to talk to the nurses, radiation technicians, etc if you have these symptoms (or any others). They can recommend some creams -- i had a steroid cream for a little while which helped. I was told not to use any cream without discussing with the nurse/technician first as some can interfere with the radiation. I also used lukewarm sitz baths. With something that stained my bottom purple which was weird and bizarre. Gotta laugh sometimes!

I am sorry to share these negative side effects with you -- we are all different and of course I hope you have as smooth a ride as possible.

Best wishes,
Tara

msccolon

usakat said:

80's Fashion?
Funny comment, Mary...I suppose one could always complete the ensemble with a pair of parachute pants or acid wash jeans, high top tennis shoes, neon shirt and a snappy pair of Wayfarer sunglasses. Remember the days when Michael Jackson was more than some strange dude with a fondness for monkeys and Sgt. Pepper jackets with massive shoulder pads? Gosh, now I'm hearing Journey and Police songs in my head...and remembering the days of big hair and Aqua Net. Hey, the bigger the hair, the closer to God...I believed it...lived it...

Aw, the 80s!
I was a BIG fan of the high tops! I wasn't much into the big hair, but do you remember 10? Yea, I lived in California and did the braid thing (thank GOD I don't have pictures!). I remember Michael Jackson when he was a black guy with some talent... those were the days, huh? To look at him makes a person thankful for NOT having the money and fame that he had... it obviously has been more than he could handle and he just snapped along the way. Of course, i was more into the Osmonds than the Jacksons (Donny was my CRUSH!) I was such a geek, but that was the 70s! Well, enough reminiscing!