Weekly Taxol for Stage 4

wrsmith2x

Started Taxol on Monday and what a weird turn of events. Right now I feel like I will fall asleep in minute, even while typing, and I also am shaky and feel like I want to crawl out of my skin. I suppose that is the steroid? When I lay down I feel like I can't breath and even sitting up breathing is very shallow. I've also put on about 4 1/2 lbs..Ugh>

Does any of this sound familiar? When does it get better? Does it get better at all? What can I do in the meantime? When is the crash or am I in it? Help.

Lauralind5

Oh my wrs. The jitteriness etc is steroids and you'll probably crash tomorrow. But the not breathing well thing sounds concerning. I think you should call your dr if you haven't already. 

wrsmith2x

Ativan is now on the table for the jitteriness and SOB. I slept ok last night, had to sleep with small airplane pillow behind my neck though. It was helpful. We'll see how the next round goes.

ShazzaKelly

wrsmith2x glad to hear you have gotten some relief. A lot of what you are going through sounds like the steroids. I am very sensitive to Dex. After I had a few cycles under my belt my Onc began dropping my dose slowly. I get 2mgs instead of the usual 10 now and feel so much better for it.

I've had a lovely cycle off Taxol and have enjoyed feeling nearly normal again. Clinic for me on Monday then back into it on Tuesday. Number 88. The big push now to 100 is now on.

Hope everyone's going ok.

Lauralind5

Wrs I'm glad you got a little relief. I do not tolerate Dex very well either and I'm so glad to be off it. I also had my dose reduced as low as they were willing. I don't have to take it now whew. 

I've been feeling better the last couple of days which is good. This afternoon I found out that my coworkers donated 315 hours of time for me !! I'm trying to get in 20 hours a week so that will last me a while. Plus I hear there's more coming. I'm so overwhelmed and thankful. 

Shazza yay for feeling almost normal !  Wow 88. That's super 

Texasrose53

Hey Lauralind,

That is so awesome of your co-workers donating their time to you. The company I use to work for had that policy and it was great! The last thing a person needs to worry about when they have major medical issues is whether they are going to have a paycheck to pay those bills. As HR Manager for my new company that is one of the policies I am going to try and get implemented. We only have 125 employees but we do have a few employees that have major medical issues either with themselves or a family member.

Another round of Taxol today for me (only at number 11)....not anywhere near your 88 Shazza that is amazing!

Hope everyone has a good relaxing weekend!

NYCchutzpah

Just had my 30th infusion and my hair is very slowly coming back. Shazaz has your hair come back?

kt1966

I hope your next round of taxol is better wrsmith. Interesting that it may be the Dex.

I had my hair shaved when it was coming out in handfuls. Now I've got whispy fine hairs that are a couple of centimetres long (white/blonde?) and some stubble from the shaving which didn't fall out. I guess I'll be wearing hats for a while yet. How long is yours NYC? (I've just had taxol number 10)

My fingers are now feeling like they're bruised on the tips, making it sore to open the seals on milk bottles, do up buttons etc. I guess this is neuropathy? I've heard it described as numbness or tingling but not bruising? Annoying anyway.

I'm glad you had a nice time off taxol for a while Shazza, hope next week goes well.

NYCchutzpah

KT1966 I shaved my head back in late April and my hair is only about an inch (little more than a centimeter) very thin in the front so I am still wearing head coverings too hot now to wear a wig. For the neuropathy my onc has me taking alpha lupoic acid which has helped a bit. Check with your doctor and see what she says.

Charlotte

ShetlandPony

---

Kt1966, Yes that does sound like neuropathy. I also had sore finger and toe tips. It hurt to pull open a zip lock bag or to have a blanket on my toes. That pain, along with some tingling, has gone away. I still have slight toe numbness. My onc stopped my taxol at 15 because of the neuropathy, and the fact that I had already had complete metabolic response.

kt1966

Wow. A complete response & NEAD! Great, Shetlandpony. Did the neuropathy go away after you stopped the taxol?

Thanks, NYC, I will ask my onc next time I see them (2weeks away )

I'll just have to put up with it in the meantime, but I will try asking the nurses before my infusion on Wednesday

ShetlandPony

Yes, most of the neuropathy symptoms went away fairly soon after stopping taxol, except for the slight numb feeling which is fine. The first scan after three months was NEAD, and we did two more cycles after that. When I told my onc about the pain, she said we should not do a sixth cycle. I really depended on her to stop me before there would be permanent trouble. She knew how important my dancing is to me. I am thankful it worked so well and I didn't have to risk losing that.

Lauralind5

well its finally happening, my hair is falling out in clumps. I'm at the office today and really not handling this well at all ! Sigh. 3rd time around isn't any easier.

kt1966

I'm glad you still get to dance ShetlandPony

Commiserations on your hair falling out again Laura. This is the second time for me....

So, no chemo today. They accessed the port then the dr decided that it would be best to miss chemo this week, then have an assessment before next weeks chemo. I thought that they might just reduce the dose, especially as the neuropathy is not so bad today. Oh well, at least I won't have my crash on Friday :

ShetlandPony

Thanks, kt1966. What kind of assessment will they do?

kt1966

Hi ShetlandPony.

They'll probably just ask me how my fingers are feeling! I'm not sure to be honest, this is the first time I've had chemo delayed. Hopefully I can get right back to it, I don't fancy letting the cancer off the hook ;

ShazzaKelly

laura sorry to hear about your hair. Losing it is never fun. It does start to grow again reasonably quickly on taxol. I have a full head of hair although it is grey now. I keep it pretty short in case I have to change treatment and I lose it again.

KT I found a drop in the dose helped my neuropathy. I had clinic on Monday and Rueben has finally agreed to 6 weekly clinics for me. Its been such a pain going every 3 weeks for a 5 minute I'm fine appointment.

First chemo back for me was fine although there was a bit of drama when a lady in the same room had a bad reaction to her chemo. It was all action stations

Texasrose53

Laura...I feel your pain. This is the second time I have lost my hair. I had beautiful thick hair before the first chemo, when I completed that round of ACT it came in so fine and thin...had areas with hardly any hair. This time lost hair and eyebrows and lashes. I am wearing a wig, had my eyebrows tattooed and wear false eyelashes. If it takes never having hair, brows or lashes again to kill this cancer in me...then I can live with that.

Lauralind5

Texas you go girl !! I do draw on eyebrows, I have a FEW little hairs left. My hair came in slowly but enough I haven't been wearing a hat or scarf on the weekly taxol but now that they switched me to abraxane its falling out. Its the SAME DRUG. What in the world !?!?!? I also didn't realize you are triple negative also. Where was your reoccurrence to make you stage iv?

Lauralind5

Kt a reduction in dose helped mine and then taking a break helped it even more. Hopefully this will help for you as well !

Shazza , yikes drama ! Glad it wasn't you !

Im at work again today but I don't really feel like being here. I took the dog to the groomers and its not far from work so I thought I would come in. I really need to be here tomorrow so Im not staying long that's for sure ! Im trying to not touch my head lol so I can keep hair for as long as I can. Im hoping someone will point out bald spots if I miss them.

Texasrose53

Hey Lauralind...after initial diagnosis IIIA, was NED for about a year...then ONC decided to do bone scan and CT scan because it had been a year. Bone scan was clear, CT showed a lung nodule. Did PET scan and lung nodule was cancer (1.3 cm). It also showed additional 5 small tumors (all under .5 mm). One on sternum, 2 lymph nodes, and 2 in lungs. Started with Taxol on 5/1 and doing good with it. First CT largest tumor had shrunk in half and no new spots. Next CT is Sept. 9th...results on 11th. Praying for no progression. I am glad when I see a TN person on these discussion boards that is also Stage IV. Not that I am glad you are stage IV...but it is great to have others to compare notes with. We seem to be so few. Why did they switch you from Taxol?

Lauralind5

I was 3b initially in 4/13, had 4 lymphs that showed cancer had been present but 1 of those showed a tiny micromet of aliveness. After AC/T, 2 surgeries and 33 rads I was clear until the beginning of fall last year I wasn't feeling well and it took a while for me to figure it out and actually TELL my onc, it turned out to be a brain tumor. I had a craniotomy in Dec and then cyber knife radiation in January. At the end of Feb on a routine scan there were 2 enlarged lymph nodes on the right side of my chest and some scattered lung dots, too small to be measured. We didn't know if they were from the cough/cold I was having or if they were cancer. Still don't. I started taxotere and the lung spots disappeared (we are assuming they were from the cold, but still don't know) and the lymph nodes were slightly decreased. Was happy with no progression ! But I got very very debilitated on the Taxotere so after a 6 week break we started the Taxol, 2 weeks on, 1 week off. After 3 cycles I had scans and I was NED But I was having allergic reactions that kept increasing with each infusion, the last one I had a lump feeling in my throat for days after. So they switched me to Abraxane, which is the same base drug as Taxol, just mixed in a different binding agent. I've had 1 cycle of that.

kt1966

Hi all.

Shazza, it's great you can go to clinic 6 weekly now. I agree, it's such a pain to get there for just a short consult. I'm still not quite confident enough to do that tho, but hopefully will be soon I haven't seen Reuben the last couple of times.

Texas, my profile says ER+, but my malignant effusion tested ER/PR - so my oncologist is treating me as triple neg too. I don't really get it as my lymph node (opposite side to original cancer) came back as ER+. He says I'm resistant to hormonal treatments now anyway.

I hope you get good CT results with no progression.

Laura, I hope abraxane continues to treat you well but kick the cancer out. I hated the hair falling out, it's hard not to touch your head when your hair is hurting & tingling. Good luck with that!

Lauralind5

Hi everyone, hows are you all doing??

The rest of my hair fell out this weekend, I wore a wig out Saturday night and itched so much I was miserable ! I have my second infusion this Thursday, oh fun!

Anonymous

Has anyone been on this once every 3 weeks? I was just poking on my cancer agency website and I see that there 3 options for mets: every week, every week with 1 week off and every 3 weeks. It seems most people here are on the weekly with a week off. I wonder if one is more doable over another? thanks for all the information. I am in for 2nd infusion on Friday and not looking forward the dexamethasone sleeplessness that follows.

kt1966

Hi all

I had my chemo yesterday at a reduced dose (10% less) My fingernails are sore & a bit of tingling/prickling in fingers & feet. Not too bad tho so I'll keep plodding away with my taxol every week (no weeks off unless more severe side effects)

Thisisme I have 1/2 a sleeping tablet the day of my infusion to combat the steroid buzz. It seems to help.

I hope your next infusion goes well.

Laura I hate wigs, it's scarves & hats for me

ShazzaKelly

thisisme I am on weekly taxol no breaks which I have found doable. I have met a few people at chemo that are doing 3 weekly taxol and I believe it sounds much harder. More problems with low blood counts etc.

I hate hate hate Dex. I have had my dose reduced significantly over time and have found I cope much better without it. No sleeplessness and no steroid crash.

Laura I hated my wig and my itchy head. I did wear it at work but the rest of the time I went bald.

KT I hope the reduced dose helps to reduce your neuropathy.

Lauralind5

I'm so happy to be off dex ! 

I had my second infusion of Abraxane today at a 50% reduction in dose. If this doesn't help the side effects I've been having them we will switch drugs.  Is sings the text things do not like my body at all but on the flipside neither does my cancer set responds really well. It's difficult emotionally to think about switching off the line of drugs that are working so well.  

Thisisme I had taxol 2 years ago dose dense every 2 weeks. This summer I had it weekly 2 weeks on 1 week off. I'm now on Abraxane which is taxol in a different base every 3 weeks. 

Anonymous

Loralind... wow, you have had a lot of Taxol. I didnt realize that our original chemos (ie, before Stage IV diagnosis) were still available to us. I assumed they were like the post Stage IV and couldnt be reused. Do you have any insight on that?

just did 2 dose of 1st cycle ( I call 1b) and still awake but should have taken sleeping pills earlier. Will try them now... Good Night...

Lauralind5

Thisisme  I can still have it because it was stopped because of side effects not progression.