CMF Question

@ritajean,
it's just such an improvement to be feeling a little better each day instead of a little worse! Other ladies I've met at my church who have had BC gave me a heads up that it can take just as long for chemo to get out of your system as it did to go in, so I'm still taking it real easy.

I think I must have had some SE I didn't really recognize as such. For example, I think my sleep and temperature regulation were thrown way off. I'd often wake up two or three times a night in a sweat-soaked tee shirt, even though the thermostat is set down to 60 at night. Last night I wore a tee and a sweatshirt, only woke I think once, and wasn't sweaty then, which was much more usual for me pre-BC--I might wake up sweaty once or twice in a week I think. If this is anywhere near typical, I bet a lot of chemo-fatigue is flat out due to insomnia/poor sleep.

@Atall45, do you mean what dose? I was taking two 50 mg tablets daily. I'm sure the dosage is figured by the patient's weight--so many mg per kg body weight. I could have been getting the high end of the dose range. Maybe 1-1/2 tablets a day would have been an underdose for my weight. I'm just glad I'm done and hope I never need to do an encore performance. I need to check with my MO, but cytoxan and/or methotrexate may be permanently off limits for me. But I'm not going to think about that now. If I have a recurrence (heaven forbid!) I'll think about it then.

If you mean what brand or manufacturer, I don't know. I think they probably have a gallon jar of the tablets at the pharmacy and count them into a bottle according to the MO's prescription. I've never seen the original packaging. Maybe it's generic. It's a blue tablet a bit more than 1/4" across, with numbers "54-980" on each tablet.

The home health nurse came today to check me out. One thing she said is the odd tastes may be due to changes in gut flora from all the chemo and antibiotics I've been given, and I will still be taking antibiotic for a month, so she suggested I take a probiotic. I had some I got to see if they would help with the gas and bloating during chemo. They didn't, and I thought they also gave me a headache so I stopped taking them. I'll give them another try but if I get headaches again I will just deal with funny tastes or maybe try a different brand. Could be one of the inert ingredients doesn't agree with me, rather than the probiotics themselves. Anyway, that's just FYI.

The home health nurse says she doesn't need to come back, I'm doing better than expected. No PT  needed either.

Now I'm going to take a little trip to the store to pick up a couple of items and see how that goes. First time behind the wheel since the 5th or so.

You are lucky, curveball, to have friends who have been through this before.  My surgeon told me, 3 months out, that I was over the chemo and should be back to normal and excercizing at capacity.  I could barely walk!  I was so depressed to think that this wouild be the new normal.  After another 3 months I called my onco and the nurse told me it takes a year for the poison to leave your system!  After the year I would feel real improvement.  I was so relieved!  I had been breaking out in blisters after being in the sun a short time, just as I did on chemo.  I couldn't understand it.  

I'm still not myself, 10 months out, but I'm improving.  And then there's those aI's....

I wish someone would have told me earlier that I'd need patience.

@traii, I don't like yogurt, so I will just keep taking the probiotic pills. No headache so far.

@Dianarose, I wonder why our dosage was so different as we weigh within a couple pounds of the same. I was 100 mg/day. Refresh my memory, were you taking the cytoxan every day or some weeks on, some off? Maybe that is why the difference. My sense of taste is either getting back to normal or I am getting used to the new flavors. Some things still taste odd, but not as odd as last week. I am glad your depression is clearing. I sometimes got "down" and cried from sheer tiredness, but I don't think I was ever actually depressed. I have been once in the past, and glad I didn't have to deal with that at the same time as the physical fatigue.

@timbuktu, I never got blisters while on chemo, but maybe that's because I stayed in the shade. I hate hot weather! Anyway, here in Western WA there won't be any sun to shun for a couple months yet! We've been smothered with fog the last two weeks. Today it is supposed to go away but be replaced by rain and overcast. However yesterday I saw the green points of sprouting daffodils sticking out of the ground. Spring is coming! I am glad your energy level is getting better. I feel so much better already I can hardly believe it but I tire out quickly. Don't know if that's from the accumulated chemo effects or just from having been so sick. Anyway I am just going to take it easy and not push.

Yesterday I went to my support group meeting for the first time since the week before Christmas. I'm glad I went, but was a tired little teddy bear by the time I got home! Today I have my followup appointment with primary care doctor, plusI am going to see if I can get my library situation straightened out. I have a whole slew of books way overdue--I just didn't have enough energy to deal with that--and I am sure my fine is well over the limit where I could renew them online. So I am going to put them all in bags and take back to the branch and get that mess all cleared up. One thing at a time.

@ Dianarose, I bet that explains it.

Hi gals,

Glad to hear that you are getting bak to normal, Dianarose.  I don't blame you for wanting a break from it all. 

Atall45... I love your humor.  That will help you lots as you go through your journey!  Keep up that positive attitude!

Curveball, your energy will return in time, believe me.  I can remember being so fatigued after the treatments were all over and wondering if I'd ever be myself again.  Hang in there.  It will get better!

I'm off to get something accomplished around here!  It has nothing to do with my energy level.   It's called procrastinating!!!  :-)

@ritajean I know all about procrastination! I'm an expert at it, even when not tuckered out from chemo!

@beanius >>>happy dance!!<<<

Congrats Beanius on your 2 years.....great news. Thanks for sharing

Ladies, now I know why I have to have so many MGs of the C part.....thought I was heavily overweight when I read some of you having only 50mg or 100mg...lol....I'm on 2 weeks on 2 weeks off on the pill....phew....lol

Good Evening Ladies,

Beanius - CONGRATULATIONS!!! such wonderful news thanks for giving us something to look forward to!!!

Curveball - Hope your continuing on your journey of feeling good.

Traii - Glad you got an answer on your MG, but seriously if it was all about weight alone mine would be higher then 100 MG I guaruntee it .

Well here is my update - Went for my treatment yesterday with the expectation of having my cytoxan increased to 100MG, this did not happen!! Several reasons, the first is the pills are a bit spendy and they make me sick no matter what nausea meds I take, I was ok with this as I know this is part of the chemo deal, you know feel like crap most of the time . Also after I have my infusion I'm down for about 3 days, sleeping and nauseous, again I didn't complain as it's so much more tolerable then the taxotere.

New Plan = No chemo yesterday and I stopped taking the cytoxan pills. Starting next Wednesday all meds increased in dosage and given via IV. I will only go every 3 weeks for 4 treatments. I'm soooooo super excited not to go every week and not to take that dam blue pill everyday!!! He is certain I will be sick for a few days after treatment but I am now anyway. However then I should have about 2 good weeks inbetween, this also cuts my treatment time by almost 3 months. YIPPIE!!!!!

My MO said he couldn't imagine going 6 months and not feeling good, he so incredible, and caring I absolutely love him!!!

Please oh please oh please I hope this works and that my body tolerates this treatment.

Sorry for the long rambling.

((((HUGS))) to everyone!!!

BEANIUS!    SO GLAD TO SEE A POST FROM YOU!  I have thought about you often and wondered how you were doing!  It is so good to hear that all is well with you!  Congrats on the good results and please keep in touch every so often!

The other day just by accident I noticed that my tongue was a peculiar dark color. I decided to brush the surface of my tongue every time I do my teeth. As I've done so, both the discoloration and the strange tastes of food have greatly decreased. I think either the chemo meds or one of the drugs I was given in the hospital made the top surface of my tongue slough off. (YUK! I hope that's not TMI.) No wonder everything tasted strange!

@ritajean, I never got around to trying Biotene mouthwash. I only had a few mouth sores and they went away with that old home remedy of a warm saltwater rinse. You don't have to drag yourself down to the pharmacy to get that! I wonder if the biotene mouthwash and/or toothpaste would help get rid of the rest of this residue...

I am feeling better every day. Yesterday I went to church after missing two weeks. All my choir mates were asking if I would be at practice this week, but I still can't sing worth beans. My mom was on a ventilator for much longer than I several years ago and her singing voice has never been the same since then. I was only on overnight so I don't expect any permanent effects, but I don't want to take any risks by trying to rush things. I have a constant dripping down the back of my throat, too, which I suspect is here to stay until my nose hair grows back and/or the warmer weather arrives, and just that is enough to put the kibosh on singing for now.

Also, I will be moving to another city later this year and need to have some repair work done on my house there. I was planning to put that on a higher priority than making it to choir practice every week, and now with this voice business, maybe this is the time to bow out for a while....

Curveball - That happened to me with my one and only taxotere treatment, my mouth was so infected I ended up with thrush. What you say about your tongue that happened to me, only my tongue was to sore to brush but it did slough off and when my "new tongue" showed up so did my taste buds . I have a friend who works for a dentist and she brought me biotene samples to try, it's wonderful stuff!!! Glad to hear your continuing to feel better!!!

It has been such a great week without any meds, no chemo pills, no nausea pills, no laxatives, no sleeping pills and no chemo infusion. Wednesday it starts all over, I am hoping and praying my new treatment plan works!!!

Hugs to all hope you have a great day!!!