Anyone starting chemo in June 08

HI:

Rover:  A few suggestions given to me by others and oncologist when I began the dose dense A/C:  ( I had it X 4 every 2 weeks and am done with as of 7/31 and my tumor has shrunk 25%)

Drink, drink, drink water before, during and after tx.   And the first "pee" after the push is BRIGHT Red, which is pretty freaky, It gets less and less over 24-48 hours, but eeeekkk...    Sip  on ice chips also during the tx.   Biotene mouthwash and tooth paste keep the mouth from becoming too tender.  Chap stick for dry lips, but I still have cracked corners of the mouth even with vaseline on before going to bed.  Yawn in the morning and boom, cracked corners.    Carmex (brand) is really good and softer than regular chap stick.   DO NOT Get any flavored ones - big yuck (for me)...

Eat something before tx - like yogurt or pb on toast.  They feed me at my center, but one could take a snack.  Keeping something in the tummy - small, but frequent snacks worked good for me.  I sort of grazed throughout the day (and night) - pudding cups, yogurt, jello, ice cream - the cold felt much better in my mouth than hot foods.  Cottage cheese, pb crackers, stuff I could grab and go.   Applesauce, fruit cups, but I do live alone and do not have the pressure of family meals and I am retired, so no work schedule either.  But small regular meals also - healthy diet helps the body heal and recover.   

The meds for nausea are wonderful:  EMEND is an absolute MUST and my onco says IF you do not get it, that is cruel and unnecessary punishment.   Don't be a martyr and suck it up - there is no need to vomit your guts out.  

And keep in touch with your doctor/nurse - that is what they do, their job.   Call even if YOU think it is silly - better to be safe than suffer - MY opinion.   The worst part about the first tx is the unknown,but that seems to be the standard with most of this journey.  Tests, waiting, appointments, treatments, waiting for side effects, and then trying to regain some form of normal, and more waiting.   I have added "wait" to my 4 letter word list !

Fatigue and lack of energy and motivation are my usual.   It gives me a good excuse to bow out of social invitations especially from those I do not care to be around.   Not that I am much of a social butterfly !    

And watch for those germs:  do NOT put your purse or tote bag on the kitchen counter or table.  Wipe it off with sani wipes or soap and water and do not put it on the floor or car floor.    I  may be one of the sani wipes best customers - anyone ever watch Monk on tv?  I am becoming like him !!   That gel stuff fits in the purse and in the car nicely and beats getting some nasty virus or infection.   

Okay, guess I am a bit wired today - but I am in a good mood and I apologize for my weird sense of humor.   But then, no one needs help with the sad, lonely, pain or fear.   Hang in there and have the best day you can.  HUGS,  Nancy

Vinogal, That's a bummer. What a good son you have. Rest up, there will be other games.  He knows why you can't be there.  Hope you get to feeling better.  Hunkyd

AKANancy -

Thanks for the helpful hints about AC......taxol screwed up my taste buds and appetite so food is an issue for me now.   My doc doesn't expect my taste buds to return to normal w/ AC either.  Challenging to find foods that taste good.  Like you I live alone so it's easier to experiment and eat weird combinations and not effect anyone else.  On the plus side I have lost 15 lbs. - although I could stand to lose a few lbs. - so doc is not conerned - but I look for the positive whenever I can find it.

Rover

Hey everyone - bcak from my 2 weeks in British Columbia l- had my birthday there - couldn't eat birthday cake as for first week still can't eat dairy or sugar -or anything else thats fun!  anyone else do that  - I eat dairy and my mouth slimes up! - I find it really difficult to find something good to drink too!- everything tastes like metal and really yucky!

Had my 4th  out of 6 treatments on Tuesday (yeah 2/3 down!) and had a pic line put in as they were running out of veins!  Boy it makes the treatment go better but holy dinah its a pain is the derriere!

Hopefully in the next couple of days I can get back to some ice cream - it's funny how I crave everything I can't have!  I Hope everyone one is doing great -

Well still trying to get the bowel thing working - after giving birth to a 7 lb elephant and ending up in hosp - had that enima - well nothing would stay in so ended up going reverse route - luckily??? with the new round and more plugging anti nasea drugs I have plaugged up again but I think I am still ok!  Anyone else have these ridiculous issue.  Ya probably worse ones too!

Love ya all and keep on trucking! 

Sue Peer

Red Deer AB

Hi,  I too am trouble finding anything that tastes OK to drink after my first TC Tx.  The best for me so far has been Juicy Juice Grape, Ginger Ale, and the WalMart Version of Crystal Light in Orange Flavor (tastes like baby aspirin).

I tried the lemon lime gatorade today since water and milk do not taste good and it was yucky.  I made myself drink half the bottle then gave up.  I am going to try the orange flavor and see if it helps.   I finished my last ac on monday but it seems like my taste is just now getting off.  Hopefully it will revert to more normal over the next week before I start the taxol/herceptin.

My husband has been sick recently, allergies etc, and it is driving me nuts.  He keeps laying around and we have three kids it would be nice to have help with.  I have been getting up and moving for months now and he acts like he is the one with a life threatening disease.  I know this is mean but I honestly can not be in the room with him right now.  After Mass, how bad is that, I had to go do laundry just to get away from him.  Please tell me I am not the only mean mean mean wife around....   Kelly 

Kelly,

I can't keep my husband home! He goes out with friends. I encourage him to because I know I'm not much fun lately but it's really getting rediculous. We own our own business and he pretty much can make his own hours. He is gone everyday and now pretty much all weekend too.

I guess it's just his way of coping. I'd be pissed if he sat around all day though! I can really see where your coming from!

Donalee

I had a bit of severe pain (a day or 2) after Neulasta.  They gave me a prescription for codeine, but I only needed one at night to be able to find a position to sleep in.

Gina

Well.......finally feeling human again.......I think this was my hardest AC for sure.........glad it's over.......cleaned my new house from top to bottom today........exhausted now......but really looking forward to moving in........we will be sleeping there on Saturday......yay.........we have been living at my mom's for the last 4 months.......while building this one.......while it has been nice to have the help with the kids and stuff.........I need my own space.......6 more days!

 Cheers

Jax

Kellke:  Glad you are in a better frame of mind.  Everybody goes through some form of pissyness during this emotional time so don't appologize about it.  Hard on the family too.  Glad you are getting your son all ready for college...I'm sure there are lots of emotions encompassing the whole house.  Yea for the cinnabon!!!! 

Vinogal:  Wow new house....congrats!  I am not sure I would have the energy for cleaning or moving,  Hope you get lots of good help with that.  Will be nice now that you can have your own space.  I have trouble keeping mine clean.  Didn't go to work today so maybe I can get the wood floors at least swept and cleaned.  Have you got your internet set up there yet?  Anyway, bet it is nice.

Too all the rest....Happy Monday!  HunkyD

Kiya,

I was led to believe that taxol would be easier than FEC (comparable to AC, I believe), so I was all looking forward to the lack of nausea.  Alas, my own experience since my first taxol on thursday has been pretty awful.  Here's what I didn't really expect: crazy bone aches (loading up on ibuprofen), and the feeling that my entire tongue was burned, so I have no sense of taste left.  My digestion is off, but that almost seems negligeable.  I'm eating lots of soup - the hot smoothness soothes my throat.  Those steroids made me crazy, though!  I'm planning to negotiate a lower dosage for next time - there was just a weird feeling around my heart/chest that didn't seem right.  I didn't bother tapering off as they suggested - I could tell there was so much built up in my system that I didn't want to add any more.  I don't mean to scare you, but maybe if you're prepared for the worst that can happen, you'll be pleasantly surprised when it's more manageable.

Good luck. 

I am still trying to find the "perfect" drink!  It seems that everything I eat or drink whether it be sugar free gum or what ever my mouth slimes up!  Any one know how to get past this!  Last 2 days could hardly get off the couch - yikes I hope I can make it through to the last 2 treatments because this just isn't fun anymore!  OK Whing over!  Tomorrow is anther day!

Hi Everyone:

I found a very tasty drink treat:  Sprite with Lime Sherbet. Admittedly it is not the thing to drink all day long, but refreshing, tasty and nice and cold in the mouth and throat.    

Yesterday I finally got the port implanted with very little pain and mom/son time together as he drove me home and visited for a while after.    He even brought me coffee while I was in recovery, since he knew I had nothing to eat or drink before the procedure (yes, he got permission for me to have it).  Sweet ...   And they fed me a chicken sandwich, chips, fresh peach and granola bar.   

I finally have the cracks at the corners of my mouth healed up.  Vitamin E capsule, puncture it and squeeze all over the place.  Overnight it was a thousand percent healed.   And I stopped using anything with petrolatum (vaseline) in it.   

HUGS,  Nancy