BEP protocol,,,

[AFRetired09]

Hi guys,
Had my I/O yesterday and now await chemo treatment starting on 27 Jul. I'd really like to pick your brains on what to expect. Some questions I have:

1. How did you feel during the first week of B.E.P? Were you able to work, were you just exhausted? Did you have cramps etc?

2. When did you start losing hair, was it just on your head or everywhere?

3. Was there anything nutrionally you ate that helped? Did the drugs cause drastic weight lose/gain?

Just trying to get a better understanding of all this!
Thanks
Dan

[Smartie]

Hi Dan.

1. How did you feel during the first week of B.E.P? Were you able to work, were you just exhausted? Did you have cramps etc?

I felt OK a lot of the time, but a bit grim at others. At times I was vomiting and nauseous. At other times I felt well and was fairly cheerful.

2. When did you start losing hair, was it just on your head or everywhere?

It started to go a few days before the second cycle started. Best to shave it off before it goes, as the individual hairs hurt when they are lose it the follicle.

3. Was there anything nutrionally you ate that helped? Did the drugs cause drastic weight lose/gain?

For the first couple of weeks, I was really hungry. I ate loads and I put on weight. For the rest of the time, my appetite was low, and things tasted metallic and I lost about two stone (28 pounds). I always advise people to eat whatever they can manage, and don't limit your options by trying to stick to particular foods. Better to eat whatever you can manage and keep your strength up.

Good luck!

[JNW]

Hi Dan,
My brother tries to eat ALOT (almost every meal) Beef and Broccolli. They are supposed to help with red blood cells. His levels have always been pretty good. The only time he needed a transfusion was at the very beginning and he hadn't been eating alot of beef. John did have drastic weight loss before his chemo began. He had to be hospitalized for it. He was then given IV food through a PICC line until he got alittle healthier. His number weight never really changed after that. BTW He also eats alot of mashed potatoes when he's nauseous and told me that he will never eat salad again when he gets chemo. It's not pretty.
Jeri

[Moriarty]

I felt pretty decent for the first couple days but gradually felt worse throughout the treatments. I had a hard time with my anti-nausea medications themselves, but that was more a "me thing" than a medication thing or the doctors or whatever.

One thing I wish I did more of was drink a lot of water. I often wound up dehydrated because I just wouldn't feel like drinking anything.

For awhile, I had a hard time keeping any food down (this was largely due to me having a difficult time getting my anti-nausea meds down) and at one point wound up eating chinese food (whoever thought it was a good idea, I dunno) and it surprisingly was one of the few things that I did not have a bad experience with. Something about the MSG of the golden fingers and beef teryiaki apparently agreed with me.

I didn't experience any discomfort from the hair loss. I had my hair cut down to maybe a quarter of an inch and it eventually fell out. My facial hair actually started falling out first.

[Davepet]

Originally Posted by AFRetired09

1. How did you feel during the first week of B.E.P? Were you able to work, were you just exhausted? Did you have cramps etc?

*During* my first week I felt pretty good, the weekend after, I was pretty tired, & had a vague uneasiness in my stomach, which went away after taking one of the anti-nausea pills. Each course of treatment gets a bit worse.

Originally Posted by AFRetired09

2. When did you start losing hair, was it just on your head or everywhere?

Around the third week, I lost my head, mustache, beard stopped growing, & torso. My eyebrows, eyelashes, arms & legs thinned, but didn't ever go smooth. They continued top shed post week 9 as new hair grew in. I shaved my head the day after it started falling out en masse. I also never had any pain from hairs that hadn't fallen out.

Originally Posted by AFRetired09

3. Was there anything nutrionally you ate that helped? Did the drugs cause drastic weight lose/gain?

I ate whatever I felt like eating. I developed a taste for some things I don't normally eat & lost the desire to eat some things I have always liked. I had no problem staying hydrated, although at times I may have drank too much water & just couldn't put down any more.
I gained 15 pounds during chemo & still haven't been able to lose it all.\\

Hope that helps,

Dave

[AFRetired09]

I guess it truly is different for each individual. Some gain weight, some lose. Some can work some can not..

Were any of you able to drive to and from your treatment yourself? I'm doing outpatient and it's going to be hard to coordinate rides..

[Smartie]

Originally Posted by AFRetired09

I guess it truly is different for each individual. Some gain weight, some lose. Some can work some can not..

So true. I was very interested to hear that others didn't have the discomfort that I did when my hair started to fall out.

Originally Posted by AFRetired09

Were any of you able to drive to and from your treatment yourself? I'm doing outpatient and it's going to be hard to coordinate rides..

I didn't drive at all during my treatment - but I was lucky that my wife was always on hand, and she does most of the driving anyway.

I certainly know of guys who drove themselves to and from hospital - my friend who had TC at the same time as me among them. I think if I'd needed to drive, I could have most of the time, although there were a couple of times when my wife had to pull over for me to vomit on the journey home. I guess if I'd been driving myself I would have delayed my journey home from the hospital for an hour or two, until I wasn't feeling nauseous. Overall, I think it would be manageable.

[Davepet]

Originally Posted by AFRetired09

Were any of you able to drive to and from your treatment yourself? I'm doing outpatient and it's going to be hard to coordinate rides..

I drove myself to & from all my treatments, and the treatment center was 35 miles from home. I did delay the trip home some days, though, by napping at my mother-in-law's, which was just a few miles from the treatment center.
Dave

[AFRetired09]

Thanks guys. Of course being a retired military officer I have every detail planned out but after listening to what everyone is saying I guess I just really have to play it by ear.. A first for me!

Appreciate your inputs.
Dan

[Vinny]

I don't have much to add to the other experiences shared. I did swell up from the steroids, and I had no problem eating. I was prescribed Nexium for any reflux issues that might arise.

Hairwise, I lost it everywhere. Head, face, eyebrows, chest, pubes, legs, you name it. I had to sleep in t-shirts and sweatpants for a while to keep the bed clean. Had my head shaved and used a sticky-tape lint roller daily to grab any remaining follicles.

The effects of chemo are cumulative. I worked a desk job and during the infusion weeks I was wiped out and took epic naps. During the bleo-only weeks it got better and I could work a bit more than half-time, but was still tired.

[jram303]

I know i am a little late on all this but i thought that i would chime in as well. FIrst, i think i may be the only one on the site right now that did there cycles in three days rather than a full week.I would go in the morning and receive my etoposide and cisplatin infusion, and than i would leave with this pump that looked like a debit machine that did the bleo throughout the night. That thing made sleeping interesting thats for sure.I would do this for three days and then be off for the 21 days after.
I found that my nausea didn't really hit me until after my fourth round, my big problem was fatigue and i had the worst chemo brain ever.It just seemed like i was in a constant haze and couldnt focus on anything at all. That, for me, was far worse than any nausea or cramps.I had cut my hair down short and shaved everywhere minus the legs before chemo. When my hair did start to fall out all the way, there was quite a few sore spots on the old melon.i never lost hair from my legs at all, i looked like a half man half goat. As far as driving goes, i drove myself a few times, but for me personally i just could not concentrate enough to feel safe on the road.i say test the waters, and go from there my man.I would also recommend avoiding eating your favorite foods.I loved this thai sub place, and ate it all the time during chemo, but i cant even bare the smell of it now.Same with my wifes granola and cucumbers are especially the worst.
Best of luck to ya, and you will be done this in no time!!!!


joe

[Smartie]

Originally Posted by jram303

FIrst, i think i may be the only one on the site right now that did there cycles in three days rather than a full week.

I too had chemo over three days rather than five. This protocol is the norm here in Britain, and much of Europe. The cure rates are the same as for the five day regimen, but there is a risk of worsened side effect (much of which is mitigated by IV hydration.

My regimen was a little different from yours, however, and didn't involve having Bleo through the night.

Do you know if the three day protocol is the norm in Canada, or did you have the shortened version for some other reason?

[jram303]

I have been wondering that myself. I have two friends who went through chemo for tc here, and they both had the five day cycle. I know in both of their cases, it was more advanced than mine, with one of my friends presenting with brain mets even. My guess is maybe if you are In better condition and your disease is not as advanced, they really kick the crap Out of you with the 3 instead of five day treatments. I think I would much prefer the three to five day treatments, those extra two days of sleeping in the hospital would have just been too much I think.

[Davepet]

Originally Posted by jram303

I have been wondering that myself. I have two friends who went through chemo for tc here,

Where did you meet two friends with TC? The only place I have met other TC survivors is on websites like this

Originally Posted by jram303

I think I would much prefer the three to five day treatments, those extra two days of sleeping in the hospital would have just been too much I think.

Interesting, I had all my (5 days/week) treatments as an outpatient. It was 4-5 hours & then I went home. I wonder why the protocols are so different from one location to another....

Dave

[gilly6993]

Originally Posted by AFRetired09

Hi guys,
Had my I/O yesterday and now await chemo treatment starting on 27 Jul. I'd really like to pick your brains on what to expect. Some questions I have:

1. How did you feel during the first week of B.E.P? Were you able to work, were you just exhausted? Did you have cramps etc?

2. When did you start losing hair, was it just on your head or everywhere?

3. Was there anything nutrionally you ate that helped? Did the drugs cause drastic weight lose/gain?

Just trying to get a better understanding of all this!
Thanks
Dan

1: I felt pretty much normal during the first week.....I worked that week when my chemo was done for the day and worked throughout the whole cycle....

2: about 2 weeks in I shaved it all off.....my body hair thinned out greatly as well....no eyebrow loss....

3: I actually gained weight during chemo....one of the few things that tasted good was McDonalds so i ate a lot of that....

Drink lots of water, especially the full weeks of chemo....i made myself drink 1-1.5 gallons a day.....

[AFRetired09]

Tomorrow is the big day. My first treatment. Thank you all for the information, I guess I'll just see how it goes and play it by ear!

Dan

[AFRetired09]

Did those of you doing BEP stay in the hospital for the entire week? I'm in an outpaitent situation. Hoping I'm not too sick each night..

[AZRider]

I was out outpaitent for all of my cycles. the nurse's gave me 2 phone numbers one for night and weekend oncall doctors. and one for my doctor. they told me if i had a fever over 100.5 to call. or if i had any issues with side effects to call. I was only advised to go to an ER once for blood clots. most of the time they where able to help me over the phone.

[Davepet]

I was also an outpatient & even drove myself the 35 miles each way every day. I had only one event requiring me to contact my doc, I spiked a fever one evening on the 2nd or 3rd bleo treatment. It didn't require a trip to the ER, though.

The premeds they gave me kept me feeling good on the long weeks, I really only felt sick on the weekends after my long weeks. Fatigue was my biggest complaint the rest of the time.

Dave

[gilly6993]

I was outpatient also and drove to and from my sessions....