taxol side effects

carolynf

Hi all,

Teresa: Hi again. I have been following your emails and seeing how you are doing. I have been busy at work and had a busy schedule this weekend at the Air Base that kept me running. So my weekend was shot.

Brena:  I am glad there is another one on this trial.  I am not sure about the Shot you are talking about. I am on the paclitaxel and avastin.  I do not get a shot.  I finish my last treatment on May 5th!

I just had my 8th infusion today.  I have not had any rashes but the Saturday night I went to put on my military dress uniform and the pants (wool/polyester) really irritated my waist. I tried them on twice and had to take them off it hurt. Did not get a rash from it.  The next day i put them on and was fine?? I have had sore thumbnails for the past week or so.  Told my onc today and he said that on the 12 wk regiment that you shouldn't notice tingling in fingers til the 10th infusion. Two more to go.  I do take acety l-cartinine 3-4x a day (250mg). It was okay'd by my onc. The italians did a study and (i think i got it off the MD site) they found w/cancer patients and diabetics this herb helps w/neuropathy.  My onc says the the US did a study and it was good for fatigue.  I do not do dishes anymore except to put them in the dishwasher.  Husband has taken that one on. I still have a runny nose and sometimes (not quite daily) it bleeds.  I use a saline solution to keep it moist.  The funny part is if I cry from reading something at night that hits me, my nose feels much better the next day.  I really don't want to get in the habit of crying everynight.  I am feeling well but do get tired.  I am still working full time.  I am looking at the light at the end of the tunnel.  I am glad that there are a lot of strong women out there helping to determine what path science will take and hopefully find a cure if not treat each individual cancer as it should.  Hope all the rashes go away.  Not sure if taking a milk bath would help w/the rashes.  I know it will soften the skin.  Well, i've rambled on way to much!  Take care and my thoughts and prayers are with you all.

Carolyn

FloridaLady

I find it interesting that I was given Carbo, Gemzar &n Avastin for bc that spread to skin.  After starting we notice "what we than thought was skin mets in random areas on my chest wall" now I'm wondering if this was the Avastin and not my skin mets moving around.  The doctor kept saying the skin does not act this way.  We actual took pictures to document this weird behavior.  Maybe the mystery has been solved!

(I got Avastin 1 1/2 ago,  08/06-11/06 out side of a trial.)

Living in Hope,

Flalady

HeatherBLocklear

Hey FlaLady,

You might be right. It's such a new drug for BC in the USA (although it was approved for that use in Europe in 2007) that we don't know the half of it yet. I hope your docs write a paper on your reaction so that it brings the knowledge about Avastin of the medical and general communities forward.

Deb -- I am so happy I could reassure you; I always read your posts, and often think of you.

Love to both,

Annie

brena

Carolyn,

Thank you so much for joining us and sharing your story. When I used the word shot I meant injection/drip, sorry for the confusion. I am glad to hear your still working so am I and exercising every day no matter what, except day of drip.

I just completed my 8th round of paclitaxel only 4 more to go. I am scheduled to be unblinded on April 18th.

My thumbnails started hurting around my 4th Paclitaxel along with the terrible red rash on top of arm, knuckles to almost elbow. Just like a sunburn, but mild in pain not worth complaining about.

INSOMNIA is my biggest struggle even with occasional sleeping pills, only get 3-4 hrs sleep a day at best. I think when I go for radiation I will sleep the entire 6 weeks except for my appointments.

Please keep us updated on your symptoms, you are in Clinical trial E5103? double blind study using 4 rounds of A/C the 12 weeks of paclitaxel with Avastin/placebo. If not, what trial are participating.

take care and cry if you want

carolynf

Brena,

I am in the same trial as you and Teresa. I get UNBLINDED on the 21st of April. At least that's what my onc said. He's going to DC for a meeting this next week on this trial.  So i am hopefull he will come back on the 21st w/good news or information pertaining to trial and unblinding the both of us.  I have insomnia when I do not take my Lorazapam at night.  I think i accidentally took 3 instead of 2 last night.  I couldn't remember if i took 2 because my son interrupted me w/not knowing where his bball stuff was for tryouts today. So I decided to take 1 more due to working all weekend I could not risk at not being at work today due to not being in yesterday (worked from home, 1 person office).  A lot of phone calls to return/emails to answer.  I feel good today. I think i might be able to get a walk in at lunch. Won't be able to walk tonight due to my friend bringing over a freezer load of dinners!  She is my buddy from the active duty army 25 yrs ago. She just happened to retire 7 miles from my house!  I am really sorry the 2 of you or more are having these rashes. I did itch quite a bit when i was in Florida on vacation.  Not sure if the New England cold is keeping everything at bay! Not sure if your nails are getting the ridges, its especially my thumbnails and pointer fingers.  Based on my knowledge from cosmetology school way back, I remember that drugs/chemicals affect the nails this way.  Yesterday was the second time that the nurse could not draw blood from my power port. So much for not getting stuck in the arm.  She did put some "draino" (as my mom calls it) to try to break down clogging blood or whatever. I am hopefull that next week the blood drawing from port works.  I was a little sore today in the back besides arms a little sore. 

Will try to keep posted more.

C

brena

Carolyn,

Thanks for the great information and your SE's help me understand some of what I am feeling is normal. It appears I will be the first of us three to be unblinded on April 18th, then you on April 21st and then Teresa.

Please let us know what arm you were assigned. Are you doing radiation?

How long have you had the insomnia? is it normal for you are due to the chemo? Everything I read tells me I should be sleeping more, Yea right! For three months 3-4 hrs of sleep at most (no naps) and this is not normal for me. I have tried several different types of sleeping pills all giving the same results. Once in a great-great while I get 6hrs of sleep and it feels wonderful.PLEASE be careful with those sleeping pills, don't OD.

I exercise everyday (ride 7-9miles or walk 3 miles) except day of shot. One would think I would sleep, don't get me wrong I am exhausted some days I feel like a zomby. I do lay in bed because I know my body must rest.

My thumb and pointer nail beds are the most sensitive and today I had the nails cut shorter to help lessen the frequency of banging them. I keep them covered with nail polish, but did see the thumb and pointers have dark nails under the polish. Nails are still intact and hope they stay that way.

The rash on my hand and arms doesn't itch it's actually like a mild sunburn but tolerable (looks bad.) This week is the best I have seen them in 4-5 weeks, probably because I missed last weeks shot and have been putting chamomile tea on it. I am glad you did not have to deal with this SE.

Most days I usually feel good, I eat healthy and am working as much as I can tolerate-otherwise I would loose my mind staying at home.

I have not had any problems with my port, nurses are great and definitely know what their doing.

I am glad to hear you have a wonderful friend close by to be of great support. Please let us know how you progress and definitely share any information your Onc can provide. Your almost at the end unless you drew arm C.

take care

carolynf

Hi Brena,

Just wanted to drop a quick note before work.  Rough day yesterday. I got  a phone call that my husband was hit on his motorcycle.  He was stopped outside the gate to the shipyard and someone came around the corner and wasn't paying attention and crashed into the back of him which sent him flying 20ft.  Thank goodness no broken bones! He is very sore.  His back is really where he's hurting.  So having me going thru this, and then to throw him in is just a test.  I will start radiation starting June for 6.5wks.  In regards to sleeping. I was never a really sound sleeper but w/chemo i could not sleep and that's why he gave me the lorazapam.  I take either 1 or 2 a night depending on how tired i am.  It gets me thru the night so I wake up refreshed and not tired. I give you credit for exercising more than I. I have a hard time getting out there but once out there i am fine.  Just my head gets cold and neck.  Today is suppose to be around 60 so I will be able to get a walk in at lunch.  Got to get the kids up. Stay strong and keep getting the fresh air. It can do wonders.

Carolyn

sftfemme65

Hi everyone!

Carolyn I'm sorry to hear about your husband...so glad he's ok though.  people just don't pay attention when it comes to motorcycles its scarey. 

I know how you guys feel about not sleeping, I have been taking ativan nightly just to sleep.  I'm worried about taking it daily though. You said you take one or two a night, are they .5's or 1 mg? 

sftfemme65

Brena,

My hands are starting to flare up again.  Your right it is so ugly looking isn't it.  I try to do as much walking as possible, do you have any bone pain?  I have treatment on mondays and usually by thursday I'm having some bone pain, it's been rough but I can handle it.

Teresa

Vickan

How much and how often have you been on treament AC and Taxol every week for how many weeks?

carolynf

Teresa,

They are 1MG.  I have tried not taking them at night and the result is no sleep and i am totally exhausted the next day.  I learned my lesson from that.  I am hoping that once I finish chemo, NO MORE DEXAMETHADONE!  That will help in one sense.  I have to say I haven't had a whole lot of joint/muscle pain thank goodness.  This morning when I got up and went into the bathroom my nose just started bleeding nonstop.  I wish I would have bought stock in Kleenex when I started this whole thing!  Another SE that I forgot to mention was my teeth.  I had a little bit of bleeding gums the other morning.  I've had sore gums but no bleeding from brushing.  I can't wait to go back to the dentist to have my teeth cleaned.  The sun was out today and i think the ragweed is coming.  Had a little bit of a mild headache from either the weather or my sinuis's.  I also do my treatments on Mondays...What a way to start the week.  Keep putting some lotion on those hands!

Carolyn

brena

Teresa,

Your hands may get worse before you are finished, you are getting the rash just about the same cycle I started. I have been putting Chamomile tea on the rash and it has been most helpful, tried other stuff but didn't work. Missing my shot last week reduced the redness to a light pink but for some strange reason today they turned bright red and started up the wrist again. I don't get my 9th shot until tomorrow, Friday.

My lower right hand side of my back started to ache last Sunday and has not stopped along with my stomach feeling bloated. I will ask the Onc about it tomorrow just to make sure it is just a body ache. Otherwise I have had no bone pain or muscle pain, please not one more SE! I am hoping with my excercise I won't experience the ache's at least I can hope.

Does your hands hurt, itch or nothing from the red rash?

take care and keep in touch

brena

sftfemme65

Carolyn,

I have to take it too or I get no sleep.  Its definitely from the steriods.  I had a huge nosebleed this morning too, how weird.  I don't think my sinus's will ever be the same. lol

Brena,

My hands feel dry even when they aren't but they don't really hurt or anything like that.  I have actually had this rash since the beginning of taxol so about 5 weeks now. 

Maybe if I exercise more the body aches will be better.  It's worth a shot.

Teresa 

AlaskaDeb

I hate the dexamethazone.  I feel like someone has given me speed.  When I was on it in 2006 we slowly reduced the amount I took each cycle of Taxol.  By the time we got to the last2 of the 12 weekly treatment swe were down to taking it orally for one day before treatment and then getting 10mg via IV with my treatment.  When we firsst started I took it 3 days before treatment and 3 days after treatment.

This time I begged to try less steroids.  We upped my benadryl and now I take no pills, just the IV and we are down to 5mg.  The side effects are way easier.  I have to take a sleeping pill the day I get chemo and some times the next day, but other than that I am fine. 

The down side is that I tend to get anxious legs while I get my Taxol, but if I walk around with my IV pole and it helps.  I would rather be alittle uncomfortable for that few hours than feel like crap for days at a time.  For me, it has worked well.

Just FYI

Deb C

FloridaLady

I also ask them to stop giving me any steroids with chemo.  I also felt like I was on speed for two days.  My legs would jump off the bed at night. 

Flalady

twink

During my last chemo (Carboplatin), I opted to skip the steroids completely (against the wishes of the onc and onc nursing staff).  I had no unmanageable side-effects as a result.  I know they told me the mighty steroid would counter allergic reactions, swelling, nausea, etc.  I couldn't stand the SEs of the steroid and took my chances with the chemo.

Diana63

I started on 4 AC's then onto 12 treatment of DD taxol, my first 4 taxols were a night mare. Then I went to see my oncol., and he lowered my dose of Decadron. Today I had my 5th treatment and so far so good, I am still a little jittery and cant sleep much, but I'm not itching all over and I don't feel as bad. I actually went to the store after treatment I couldn't have done that last week.

The doctor said why didn't you say anything, I said I thought it was taxol and I would just have to deal with the SE's.

gsg

I hated the dexamethasone...hated it.  my girlfriend was allowed to stop getting it during her treatments and had no issues.  i asked my onc if i could stop it after the A/C and prior to starting taxol and he told me I needed it more with the taxol than the A/C.  I would turn all red the day after getting taxol...not sure what would have happened if i wasn't taking the steroids...but............

If I have a recurrence, I'm going to ask if I can try it without the steroids and see what happens.  2 years later, I'm still struggling with the 30 to 40 pounds I put on during chemo as a result of the steroids.

my last taxol was August '06...my toes are still tingling and for the second time, one of my big toenails is "growing" back in.  But the drug seemed to work, so I'll deal with the tingling and had a fake nail put on my toe so i can wear sandals. 

carolynf

I tried doing the 2nd treatment of Taxol w/out the dex and it was not good.  I must of had an allergic reaction because the nurse ran in when I called and shut off my drip.  The onc came in and laid me flat out and hooked me up to oxygen.  My mom told me I turned really red.  I had told her that i was not feeling well and decided to tell the nurse.  I might ask my onc to drop it from 2 pills the day before to 1 pill.  I agree w/bloatness/fluid retention.  The benadryl gives me the jittery legs that I also have to get up and move.  Today I raked the front lawn and now I have sore palms.  Who knows with all the stuff in my body! 

sftfemme65

I get dex when I have my weekly treatment.  I get the benadryl, dex then taxol.  I don't take any pills before or after.  I have enough issues with sleep, I can't imagine if I took more.  I haven't had any fluid retention that I have noticed.  As far as the benadryl, jittery legs is not something that happens...it knocks me out, that and the ativan they give me, I have a terrific nap every monday.  I do look flushed the day after treatment each time but I have always had that even before the taxol.

brena

Teresa,

Same regimen as you, best nap of the entire week! Guaranteed to put me out, better than my sleeping pills.

brena

sftfemme65

Brena,

you said it!  It's the only thing I look forward to on mondays...lol.  I think I like the combo just a little too much, you know what I mean.

Teresa

sftfemme65

Brena,

you said it!  It's the only thing I look forward to on mondays...lol.  I think I like the combo just a little too much, you know what I mean.

Teresa

brena

Teresa,

What day do you get unbinded?

brena

sftfemme65

brena,

Tomorrow...well today...is my 6th taxol.  Next week, 21st I have Avastin too.  So my last Avastin is on May 12th, last taxol is May 26th.  I don't remember if they unblind on the 12th before treatment or what.  I guess I should ask next week or tomorrow if I see my research nurse.  How about you?  So are you hoping to be in the arm that continues for 10 more treatments of the Avastin?  I'm scared not to be in it.  I guess I feel like as long as they are treating me it won't come back.  I know it's normal to feel this way but it sure isn't fun.  I hate being afraid all the time.

Teresa

brena

Teresa,

My unblinding is this Friday, April 18th and I totally forgot for some reason I kept thinking May 2nd. Our unblinding is our first day of cycle 8 day 1 (the last cycle of Avastin/Placebo) then continue for two more cycles of just Paclitaxel.

Not sure what my feelings are about continuing if I drew Arm C.  I would definitely continue to Arm D but no regrets if I didn't. I do hope that I am at least receiving Avastin (Arm as I believe that will definitely help reduce a recurrence. No matter what I know that I will be fine as I am sure you will be, your thoughts and concerns are very valid.

If we ever have a relapse just think of what we have now contributed toward our own future!

I just know between 6 weeks of radiation, my next clinical trial to start in May, and my follow-up visits for this trial will consume most of my year; however, I will do what I need to do.

The remainder of my Paclitaxel shots will each be reduced by 20% due to SE's. My toes are throbbing again but I do have an appointment with the Podiatrist tomorrow to see what help he can provide to get me through the next several weeks.

take care and good luck with minimal SE's with today's shot

brena

brena

Carolyn,

Check in with us, how are you doing? Is your husband recovering from his accident?

brena

brena

Teresa and Carolyn,

Are there other woman at your Dr's office that are also in this trial? if so, maybe they would like to join us.

what a beautiful sunny day  time for my bike ride

brena

sftfemme65

Brena,

You will have another clinical trial during radiation?  What is it?  Why are you having radiation, did you have a lumpectomy?  My onc doesn't want me to have it, since I only had 3 positive nodes, not 4 or more like the criteria requires but I think I'm closer to 4 than 0 so makes me wonder...I'm going to get a second opinion at least.

Ok the trial we are on I just pulled my sheets on it....it is e5103, so Arm A is placebo, Arm B is Avastin, Arm C is Avastin but this arm goes on after to Arm D for more avastin....this how it works right.  The paper says 20% go into A, then 40% in B and 40% in C.  So We have an 80 percent chance of having the drug...thats not bad. 

You know what I have been complaining of shortness of breath since I began treatment.  It was bad during a/c and avastin, taxol its better but I got it last week.  You know that one of the LIKELY side effects of Avastin is shortness of breath.  Out of those likely side effects, there are 9 I have 6.

I know this is a strange question...Does anyone know how much Avastin they are giving us during weekly Taxol, I know its more than they gave us with A/C because that was bi weekly and this is tri weekly...they told me that.  But I don't remember the Mgs.  Arm D says you will receive 15 mgs every three weeks.  Just want to know if thats more or less.

Teresa

brena

Teresa,

I had a lumpectomy so I get the honor of having my left breast cooked! a six week daily regimen is my sentence to start in June, the longest I can put it off.

In May I should start in trial S0307; a phase 3 trial for Bisphosphonates:zoledronic acid or ibandronate or clodronate and will last 3 years.

Random drawing but you know what you will be getting, plug the trial number in a search engine and you will get more details.

U are correct on the Arm A-C evaluation and it does sound as if you are receiving the Avastin, I have my fingers crossed for you. We are receiving 15mg of Avastin if we are in fact receiving the drug. We received 10mg of Avastin while taking A/C. If you go to arm D you will continue to receive 15mg of Avastin.

I am scheduled to be unblinded on April 18th and then Carolyn will be unblinded on April 21st, we will be waiting for you!!

brena