Chemo - Basic questions (sorry)

[hcueva]

Sorry if these questions have been addressed before.

I started adjuvant chemo (2 X BEP) 7 days ago. It is supossed to be preventive.

I have been feeling very, very bad after the first round. I don't know if I am too girly about it or something, but I haven't read any thread about somebody suffering as much as I have. At first the only thing was the nausea. It was bad enough not to eat at all, or almost at all and I think that that made the fatigue even worse. Normally I eat A LOT, and not being able to eat proved to be very frustrating. I had nausea all the time, I threw up once (just gastric acids..), I had constipation and severe tiredness.

Anyway, I made it to the last day and was very optimistic about feeling better during the recovery days. I was told by the nurse that I was going to feel, if not 100% better, a lot better in 3 or 4 days. This is why I'm writting you here: I do not! I'd say not at all! :S It's been 3 days and a half since my last day of my first round and I still cannot eat almost at all. The fatigue has even seemed to increase (I'm writting this after having slept for over 16 hours). If I force myself to eat a decent amount of food, I end up getting the nausea feeling again.

Is this normal? or has the chemo been too bad with my body? I still have another 3 days to go before I get the blood tests to see my plaquettes and stuff, but I wanted to ask you guys because, I have either been too naive thinking I was going to feel better (just a little) in 3 days, or the chemo has been way too bad with me.

Understanding that it varies from person to person, in how many days after the last day of the first round am I supossed to feel somewhat better? (eating normally, at least).

I know this nightmare is cummulative so, given the fact that my first round was so bad, should I expect hell on earth in the second cycle? I'm so scared. How long after the second cycle am I gonna feel better? I was planning a trip overseas 5 weeks after the last day of the second cycle, now I'm starting to have second thoughts.

Chemo has proven to be more difficult psychologically than physically. I feel desperate. I just wanna feel healthy again.

Once again, thanks for everything, you guys make up for my doctor's lack of sensitivity,
Humberto

[Scott]

Welcome, Humberto. Have you been receiving anti-nausea medication? If not, you should call and ask about it.

[dadmo]

Humberto:
What happened? I was under the impression that you were going to do surveillance. Have you told you oncologist how sick you feel? They have meds to fix alomost everthing, they can't make you feel perfect but they should make the treatment tollerable.

[TSX]

You're 3.5 days past the first "cycle"? Do you mean you're 3.5 days past the first five days of your first cycle, since a cycle is actually 21 days and being 3.5 days past the end of the cycle would mean you are on the fourth of the 5 long treatment days at the beginning of the second cycle. Or do you mean 3.5 days past the third bleo treatment in the first cycle, which would put you at day 19 of your treatment?

I don't mean to be anal retentive here, but it does make a big difference exactly what point in the cycle we're talking about. Ill assume you mean you're on day 9 of your treatment. If that is the case, you just got your second bleomycin treatment and if your experience is like mine, you are feeling the effects of that on top of the residual effects from the first five days.

In terms of how you should feel, we all react a bit differently to the drugs. To some people, it's no worse than taking an OTC drug, while others have major problems (up to and including death, unfortunately, although this is rare). My experience was that I felt terrible in each cycle until about the middle of the second week, when I was mostly over the effects of the second bleo treatment. I felt probably 70 to 80 percent of normal just before getting the third bleo treatment. The next week I felt probably 90 percent of normal just before starting the second cycle.

The second cycle was the worst for me while going through the five long days, but the third cycle (I only did three) was the worst for me in the period following the five long days. On all three cycles, I was not able to eat normally on the long days, and it took 3-5 days after each of these periods to even approach eating normally. Note that this does not include eating any type of spicy food. Even a little black pepper would really tear up my stomach. On the long days, I found that things like smoothies, Ensure and the like were about the only things I could get down reliably.

Nausea: I didn't throw up at all during chemo, but I used the anti-nausea drugs when needed. When are they needed? In my experience, only in the first five or so days after the long days end. You should be getting something like Zofran from the nurse administering your chemo on each of your long days. This is supposed to be a 24-hour dose so theoretically you shouldn't need anything else; however, if whatever drug they give to you is not helping, you should ask for another or you should supplement it yourself. I had three prescriptions for anti-nausea drugs: Zofran, Compazine and Ativan. My doctor's advice was to use one or all in whichever way worked the best for me - these drugs don't interfere with each other and so all three can be taken at once, but you still need to follow the directions like Zofran can be taken no more frequently than once every 8 hours, Compazine once every 6 hours and Ativan once every 4 hours. Zofran worked for me but is notorious for inducing constipation. My approach was to supplement the 24-hour dose of Zofran during my long days with 1mg Ativan just before going for treatment in the morning and again just before bedtime. On the 3-4 days following the long treatment days, I would take a Zofran tablet when I woke up, then a Compazine tablet about 6-8 hours later, then an Ativan tablet before bedtime. Constipation was the worst starting around day 4 or 5 of the long treatment days, but I got it under control by taking 1 or 2 Senekot-S tablets at bedtime starting on day 4 and continuing until I no longer needed the Zofran (so about 4 or 5 days straight). Starting around the middle of the second week, I only needed an occasional Ativan tablet, usually just before bed since I had a bad case of insomnia from the chemo drugs (Ativan is prescribed by doctors for each of the following conditions: nausea, anxiety or insomnia).

These anti-nausea drugs aren't perfect, and you shouldn't expect to have NO nausea at all. In my case, I was constantly "queasy" to varying degrees but not to the point where it made me throw up. I was on the threshold of throwing up many times, but I knew it was important to avoid dehydration and the increased risk of kidney damage that brings.

True story: On my first day of treatment, while I was waiting in the chair for my nurse to get everything together for my first chemo infusion, I had the unfortunate experience of being seated next to a frail elderly woman. Within five minutes of me sitting down, she begins to violently throw up, sending the nearby nurses in the chemo ward into emergency response mode. She throws up for nearly 30 minutes straight, dry heaves at the end I guess. During this all I could think was: OH ... MY ... GOD - what have I gotten myself into? Of course I felt terrible for her, but as it turned out, she had not been taking any anti-nausea medication outside of what the nurses were giving her intravenously on her infusion days. She was severely dehydrated from the constant throwing up she was doing at home, and the last I saw of her after the mega vomit session she was being wheeled from the chemo ward to a room in the hospital, where she likely stayed a few days until she was in better shape. Moral of this story? Don't be a tough guy - take the anti-nausea meds.

I should also mention that I took Ranitidine (ie, Zantac) twice a day to help with acid reflux and heartburn during much of my treatment, and this was very effective for me.

-TSX

[hcueva]

You're right, I thought that "cycle" referred to the five days that you actually get the drugs in your vein. I should say then I'm on my day 9.

I was indeed going to do surveilliance but I chickened out. I have to admit that I'm not doing it precisely because I've got a lot of faith in it but merely because I received a tremendous amount of pressure from my doctor and family :S I know it's not the right reason... but anyway, I've started now, I can't look back.

I've been getting Navoban, which is an anti-nausea med but, to be honest, I don't think it works AT ALL! I've also been getting meds for gastritis aned constipation, which I'm actually happy with, but the nausea just keeps being there.

I don't know, "tollerable" is a very relative term. I think it has a lot to do with the fact that I've always had problems with my stomach in the sense that I am very sensitive. I've been to the hospital several times after eating too much and I throw up easily after drinking heavily. But anyway, you know, if you guys suddenly told me that you just found out that Navoban (and another anti-nasuea drug they gave me) is a big fraud and that it is actually placebo, I'd believe you! :S I'll tell my doctor to give me Zofran, thanks for the tip.

Another thing, I find it odd that you mentioned that in day 9 I'd be getting my second Bleomycin. Just to make sure, my treatment (at least the first five days) went like this: Cisplatin and Epotoside (or the E, I don't know the name) from day 1 through 5 and Bleomycin only on day 2. Is that the normal protocol?

Thanks for everything, I'll keep you posted on how the blood tests turn out.

[TSX]

Another thing, I find it odd that you mentioned that in day 9 I'd be getting my second Bleomycin. Just to make sure, my treatment (at least the first five days) went like this: Cisplatin and Epotoside (or the E, I don't know the name) from day 1 through 5 and Bleomycin only on day 2. Is that the normal protocol?

That is the normal protocol for the first five days. You should also get Bleomycin by itself on day 8 or 9, then again on day 15 or 16. If you start the full cycle on a Monday, you'd usually get Bleo each Tuesday for three weeks. At my treatment center, I had the option to start on a Friday, and my Bleo treatments were given on Saturday (day 2), Friday (day 8) and Friday (day 15). My understanding is that the first Bleo treatment is important to come on the second day, due to issues of timing with respect to the other two chemo drugs, but that the second and third Bleo treatments can be shifted by a day with no loss of efficacy. My oncologist preferred that I have the second and third treatments on Fridays since she would be in the hospital on those days, which would enable her to respond more quickly in case I had a reaction to the Bleo.

If your doctor is not planning to give you the second and third Bleo treatments in each cycle, I would recommend asking about it ASAP.

Note that you may have trouble getting Zofran due to insurance issues. My insurance company (Tufts HMO) would only allow me to get 9 tablets per week. I was told that the tablets cost the insurance company 40-50 dollars each, and that is the only reason for their frugality. However, I've had no such problem with Compazine or Ativan. Some other TC guys being treated at the same hospital told me that Compazine worked better for them than Zofran, so as with all these drugs, YMMV.

-TSX

[Dave40306]

Along with the drugs I get during the treatment days, Compazine and Ativan are doing the trick for me. No nausea whatsoever, just an occasional uneasy feeling but I still have my appetite thanks to the Decadron I'm getting.

[James]

Are you only getting 2 cycles???

I had four cycles of BEP and was in Las Vegas about 4 weeks after my last cycle. Still wasnt 100%, but I was fine to be away. It felt really good actually.

I would say, 5 weeks after your LAST treatment should be a safe bet - but dont expect the heartburn and other minor annoying things to be gone. I still get the heartburn today (which I never had pre-chemo) and I am a year out now.

Good luck! Hang in there - your symptoms sound like a duplicate of my chemo weeks.. (and most others, I am sure) I had BAD nausia - Zolfran works a little (I think) but I had my DR just dope me up on Ativan - so I was sleeping rather than throwing up on my worst days. This was a good solution!!