Just Venting

tamlyn110

I am now on my 12 weekly Taxols and today I had #5.  I am getting moody, fat, pain in back and legs & and can't sleep. I have gained 16 lbs since this all started. Everyone keeps telling me I look fine and they can't tell, that just makes me even more mad that they are trying to lie to me how can you NOT tell. My stomach is so bloated I look like I am 6-7 months pregnant. I was sick this past week and did not really eat anything at all and I still gained almost 3 lbs. The most I have ever gained in 1 week. I swear it is from the decadron but they say it's not. They did lower it for me though since I said I can not sleep. They said my back probably hurts because I pulled a muscle somehow????? As far as the bloating they could care less.

On a good note.. Since sarting taxol my hair has started to grow back in. slowly, but it is growing.

everyminute

This whole stupid disease sucks but the good news is you are almost thru chemo and then you can get down to the business of growing hair for real!!!

Anonymous

Tammy,  I totally know what you are feeling.  I lost 5 lbs on the AC then when I started the taxol I gained back 7 lbs.  I know with me it was a lot of water weight, as well as bloating from constipation which was a bitch with the Taxol.  Try to take stool softeners daily and eat yogurt and fruit.  I still live on prunes and yogurt because the Taxol left me constantly constipated.  I also take 300 mg of B6 every night at bedtime to keep the water wieght from getting out of hand.  It really does work.  Also drink a lot of water during the day to flush your system, and take brisk walks.  Hang in there girl.

tamlyn110

everyminute- Yes it does suck! I can't wait for my hair to grow for real, that was really hard for me (losing it)

Shanagirl- For the first 3 weeks I had constipation but week 4 I had diarreha(sp?) The onc nurse felt around my ankles and looked at my legs and said I was not retaining any water.

I really WANT to exercise but my body does not! My legs hurt to bad.

I was very physical in my job (12 hr days in a factory) so I am on short term disability now which is done in Feb. Hopefully they will work with me as far as going back to work otherwise I don't know what I will do. I still have rads to do which prob won't start until April. I smoked before I found out but I quit the end of July so I am sure some of the weight has to do with that & not working but it is so frustrating!

Anyone know of any tolerable, fun, at home exercise dvds?

jenn3

Tammy - I hear ya' on the Taxol.  I lost weight on the AC and gained on the Taxol.  My eating really wasn't terribly different, but I guess the steroids are what do it to us.  Like you my hair started growing on Taxol and I suffered with leg pain.  I just finished Taxol 3 weeks ago and the leg pain is gone - hopefully your leg pain will go away with the Taxol too.  I did walk almost everyday up until the last three weeks, which is when it got to be too much for me.  Until that time I found that the walking helped mentally and I think helped to keep the strength in my legs.  I don't have one, but from what I've been reading Wii Fit is the way to go. 

tamlyn110

Jenn3- Thanks for responding. Are you starting rads soon? Our stats are similar. How many rads are you going to have if so? My sister has wii fit and never uses it, maybe she will let me borrow it. Did you have pain in your lower back too?

everyminute

There are some at home walking dvds - leslie sansone - that you may want to try.  That will keep you moving. 

My bangs are now long enough to tuck behind my ears (and my hair did NOT grow back on Taxol so you have a jump start!)

KerryMac

Tammy - reading your post reminded me of me, way back in April, near the end of my Taxatore. You are in the middle of the Chemo Crazies!! Yep, it seemed every weigh-in I was 2 kg heavier (and it is the Decadron, whatever they say), I felt awful, looked awful, and I was so over putting that damn wig on every day.

This is really the hard part. The slog. I felt like it had all been going on for so long, and I was just ready for it to be over. All I can say is just keep putting one foot in front of the other, and get it done.

Once you start getting the drugs out of your system you will start feeling good again. It just takes time. But I am 8 months out, and feeling fantastic. The weight just sort of went away. And I have hair!!

Hang in there, you will be looking back on this before you know it.

Monty

Hi

I'm a year out almost from finishing rads and the good news is your almost done chemo.  I found chemo and rads the easier of the treatments.  I remember sitting down and crying to my husband one night because I had gained 12lbs (I only weigh 95 lbs) almost overnight at the end of the chemo.  It turned out it was the same drug as you mention that had caused water retention so they gave me water pills and it went away almost as quickly as it came, it returned a few days over a short period but has stayed away for the most part.

My hair did not grow for 6 months after finishing chemo so you really do have a jump start on most.  When it did grow back it was curly at first but then grew straighter as the drugs left my system.  My hair was really thick and coarse pre chemo but is finer and not nearly as thick now, and over a year now since I finished chemo.  I think now its the AI I take to reduce the chance of recurrence that affects it, plus it's not that long since I finished Herceptin whcih also seems to affect hair and nail growth.

 The great news we are all alive to share our experiences however good or bad we have felt throughout the treatment.

Love to all

Gaynor

Bugs

Tamlyn,

I gained HUGE amounts of water weight with Taxol.  Ugh, my ankles were calf size, I swear.  It took almost 3 months after the end of Taxol for it to start coming off.  I remember pointing to my ankles when I saw my onc nurse in the hall while at rads.  I asked her if this was normal and she said VERY normal with Taxol.

I had alot of pain with Taxol, too.  Mostly my legs and hips...but nothing was immune. Try to get your activity in when you are feeling good and do yoga or stretching when you are in the pain part of it.

Congrats on the hair!!

tamlyn110

I don't post a whole lot but I read everyday and you all always know how to make me feel better. No one understands like you, my fellow "Sisters" Thank you all so much!

jenn3

Tammy - Yes, I had back pain, sharp severe pain in my thighs, pain in my feet and hands and on days 3-5 I was so tender that I couldn't stand to be touched ANYWHERE.  The holidays were hard because everyone wanted to hug me and it was extremely painful. I am 3 weeks PFC the leg pain is all but gone, still a little tender in the shoulders, but better overall and neuopathy pains are getting better.  I am meeting with the rad onc Tuesday and will also do my mapping at that time, so I'm guessing I'll start rads shortly thereafter.

You're right it is hard for other people to understand what we go through. I sure hope you feel better soon - remember, if your body says rest - rest.

clariceak

Tammy

I'm right with you with Taxol. I just finished my 4th weekly Taxol out of 12.  My onc said I didn't need steroids other than what they put in the infusion bag.  However, I started getting hives before my last treatment so that might change.

You might ask about lowering your steroid dosage.

I'll start on rads in March.  I'm pretty happy because I'm traveling to my sister's house in California and I'm taking my kids with me for 3 weeks out of the 6.  I'm thinking about renting a camper van that we can park in my sister's house (her house is tiny so we need space to sleep) and then travel around on the weekends.  We're from Alaska so we looking forward to soaking up some vitamin D.

cat60

I havent started Taxol , beginning of Feb. as I am having my Masectomy on Tuesday...Just completed A/C two weeks ago....My question is do they give you the Neulasta shot after each Taxol TX..???

clariceak

I haven't received any Neulasta with Taxol, although I did receive weekly shots during A/C.

tamlyn110

Clariceak- I think I have to wait a month from the time I finish Taxol before I start rads which will be April. Enjoy your time In Ca. Stay in touch with how your Taxol treatments are going, we can compare notes.

Cat60- No neulasta with taxol for me just with the AC

apple

prunes and that silly yogurt they make fun of on SNL... they really help

Beverly11

I gained 8-10 pounds on chemo.  On my 1st regime I would be throw up a number of times, weigh myself in the morning and I would gain a bunch of weight.  (up to 5 pounds)  It truly is the chemo.  My face was swollen, couldn't wear my rings, shoes didn't fit.  Yeah, and people liked to tell me I looked great which still irritates me.  I feel for you.  Those are tough, tough times.  But, things will get better.