Weekly Taxol group

cloudynight

No one has mentioned avoiding coffee or caffeine to me at all. I looked at the justification for cutting it out, and I'm going to still drink it. (My infusion center is next to a cafe, and the nurses encourage you to get a coffee to sip during the infusion. Seems like ifl they were contraindicated someone would have mentioned it.)

Tresjoli2

Well I had infusion #7 of 12 today. Herceptin went in fine. My MO decided to reduce my steroids from 20 to 12mg for this round because i am doing so well. So my pre meds go in. 10 minutes into the infusion I have a cardiac reaction...blood pressure soars and my heart rate jumps to 145 beats per minute and becomes irregular. I break out in hives and flush.At first i try to tell myself I'm just anxious because she lowered my steroids. Take a few deep breaths...it gets worse. I push the panic button. They give me more steroids and stop the taxol. I begin to shiver and shake. We decide to give me the extra Decadron wait for a half hour and try again.i ask for Ativan lol...

We try again, and 4 minutes in the second try..same thing happens all over again. Hit the panice button again. More steroids. Stop the infusion.

So we kill the taxol. Period. I start Abraxane next week.

I have so many steroids in me at this point that I'm anxious and edgy and might not sleep for a week. I'm also crushed to shift to abraxane. But I have now been told my hypersensitivity reaction to taxol is in the 1% of no way no how ever again. Sigh...

KBeee

Tresjoli, Sorry about the reaction. The solvent used to dissolve the Taxol is what people are allergic to. Abraxane does not use it so you will not react to it, and should not even need steroids. I hope that goes better for you!

Anyone else have a numb tongue? My fingers and toes are not numb. I have a big area on my heel that is numb and then my tongue get numb for about 4 days each week. Odd. Annoying. But not as bad as most side effects so I just roll my eyes and roll with it.

Angiel

wow Tresjoli, I am so sorry to hear about your infusion! I hope Kbee is right and that your next one goes on without a hitch. How scary for you!

Kbee, I am 5 weeks PFC and I still have an area of my big toe that is numb. Just on one foot. I guess in the big scheme of things, it's not a big deal, but it is still annoying. I still have tingling in my fingertips and toes...

StefLove

treajol, sorry about the taxol! But I actually heard that Abraxane is the same exact drug as taxol just with a diff mixing agent in it that people aren't allergic to. The only reason we all get taxol first is because it's much cheaper and almost all insurance insist we all try taxol first. Not sure how true it is but I'd feel better being on abraxane!

Just finished taxol/carboplatin #4 yesterday and am wide awake from the steroids. At least it gives me a chance to catch up on the boards!

AnewBeginning

Tresjoli

Sorry to hear what a hard time you had. I guess we just dont know from week to week what to expect. Hopefully the change to Abraxane will be much better for you.

Tresjoli2

thanks guys. It was incredibly frightening and frustrating that the medicine you think you need is going to make you very sick. My medical team was amazing...but I was in tears. Thank god my best friend had flown in for the weekend to support me and was sitting by my side. I thought at week #7 I cleared the hurdles. I'm sure abraxane will be fine. I'm hurting from the steroid crash this morning...

AnewBeginning

KBeee

Dont have numb tongue but all toes on R foot and a few on left constantly numb.......horrible feelling. Ankles and tops of both feet swollen. I cant wait to finish up with this Taxol. Four more to go then I start Herceptin and Perjeta weekly for 39 weeks........seems like forever.

Hope your numb tongue doesnt last long.

Tresjoli2

my tongue feels funny but not numb. All my food tastes strange

AnewBeginning

Angiel

Not sure what PFC means? Do you take L-Glutamine?

KBeee

AJ, PFC is post final chemo.

Trvler

Tresjoli: Wow, I am sorry you had to go through that. I hope next week goes off without a hitch. What day do you go?

I have had no numbness, some tingling but my right eye was twitching all day yesterday. I have no idea if it's a chemo thing but I blame EVERYTHING on chemo so….lol

How long PFC are you supposed to keep taking the Glutamine? I take it only 1x a day because Specials' study about it scared me and my tingling hasn't been too bad.

AnewBeginning

KBeee you are so helpful!

BBwithBC45

I'm almost 11 weeks PFC and still have numb part of my foot. It didn't go numb until about 5 weeks PFC and I don't think it will ever be back to normal.

My tongue was never numb, but taste buds took a few weeks to come back and I don't think they're 100% back yet.

I still have on and off nausea.

Trvler

BB: Did you or are you now taking any glutamine?

rainnyc

KBeee, I don't have a numb tongue but sense of taste definitely is off after some--not all--treatments. I've also had numb lips though that seemed to lessen once they stopped giving me the Benadryl as a pretreatment. Numb toes on left foot, however.

BBwithBC45

Allison, I was taking the recommended dose of Glutamine (3 x 10 grams) throughout the chemo and at my MO's recommendation for 4 weeks PFC. My numb foot developed few days after I stopped taking it - could be just coincidence, but I got upset abut the numbness and scared, and decided to finish the bottle of the powder that I still had left over so I took it for another couple of weeks

Trvler

Could you start taking it again?

BBwithBC45

I don't know, I don't see why not. But I don't think it will help at this point with my foot

Tresjoli2

Thanks trvler. I start Abraxne next friday. I plan to stay here.since.iy is essentially the same drug if everyone doesn't mind. There is no Abraxane thread that I can find.

KBeee

Of course we want you to stay here!!!!!!

tryn2staycalm

Tresjoli2 - OMG that would be sooooooo scary for you and your friend. Glad your team was right on it for you. Best of luck next Friday! I can't see why anyone would mind if you stayed on this thread. Would be very selfish and rather rude I'd say! Your part of the Taxol team.. even if its with a twist now. Hugs.

Cathy

Trvler

By all means, stay!

Tresjoli2

Thanks! I will let everyone know how Friday goes. I'm terrified. What if it's the taxol I'm allergic to and not the solvent? I guess we find out friday. Calling my insurance company Monday to make sure they will cover it. I asked my dad to come to town and go with me to my treatment.

Leighrh

WOOHOO KAREN!!!! #11 today...... one more week and you will be DONE!!!!!!! So pumped for you!

Trvler

So I was noticing my tongue looks a little yellow. Is that thrush? No pain or itching or anything. I don't know what thrush symptoms are. But there is this little white thing kind of growing towards the tip. Is this a Taxol thing?

KBeee

That sounds like thrush Allison; does it feel slimy? Do a lot of salt/baking soda rinses, and call so you can get it treated.

Labs were the best they've been since I started. Whoohooooooooooooo!!!!!!! 8 days left. 1 to go! Even better is that 28 days from now I get my port out. Actually, it's 27 days, 23 hours, and 42 minutes. Not that I'm counting.

Trvler

Yeah, Karen! I am obsessed with my labs.

I go tomorrow for #11.

ninjamary

any idea why they make you keep your port in for two weeks after chemo is finished? I'm Triple Negative and I (honestly) thought the damn thing should have or could have come out the following day. There is no need for it. It's not like I'm going to agree to super fun #13 Taxol treatment. It seems silly.

molly1976

Maybe to allow time for your blood counts to recover before cutting you open. Risk of infection and all that.

I don't get mine out until March due to Herceptin. Wah!