Terrified of Taxol!

deb2001

Please share with me your experiences with Taxol. I need all info especially the bad side effects. If you had absolutely no problems at all, I'd love to hear that too.

I have Breast CA, been in Tx. since Dec. I have completed 2 cycles of AC only to be followed by Taxol with Herceptin. I am not liking at all some of the times I'm hearing.

Going crazy in FL!

Deb

Susan956

Deb,

For me the A/C was much worse than the taxol. I had to do 4 treatments of A/C spaced 2 weeks apart. Then I started Taxol/Herceptin for 12 weeks each week. For me just getting off of A/C let my blood fix it self and my stomach no longer felt bad. Some of my energy returned.

Ok, here is the skinny on your two new drugs. Taxol can cause a substantial allergic reaction (I didn't have it - but they watch you very closely the first time they give it to you. So bring someone with you to treatment the first time) Secondly they use a number of pre-drugs to help with this drug (Steriods & Benedryl). Work with your Nurses to try to make sure that they are using the lowest doses of these drugs that you can. The Steriods will make you feel starved... So I gained some weight. The beneryl will either make you sleepy or if you or like me it had the opposite effect and caused restless leg syndrome... but this was easily solved by reducing the dose of these drugs each treatment until we found the right dosage. I didn't notice any real effects for taxol until I was probably 1/2 way through treatment. For most of us it causes some limited nerve damage in our feet and hands. (It does get better after treatment).. but I would expect that your feet and hands will hurt (kind of like pins and needles.) Also, your nails will look bad toward the end of treatment. I lost 2 toenails and my finger nails looked pretty bad (discolored under the nail) I used nail polish fairly routinely, but I have heard others here say that wasn't the right thing to do. Ask you onc.

As for Herceptin for the majority of people there are no major side effects. I happen to be in the >10% range that had a toxic reaction with my heart. (Again it was temporary) But where as they would have liked to keep me on herceptin for 1 year. I made it through only 26 treatments. Make sure that they do something to check your heart function while you are on Herceptin(Mine did Echocardiagrams.) It let you make choices along the way to decide to continue the Herceptin or cease it. (If you notice your feet swelling... call the Onc .. it is a sign of heart problems from the drug) I am not sure that they currently recommend the full 52 weeks worth of Herceptin. I believe their latest studies shows that you get the majority of the benefits with a shorter treatment cycle.

OK, Now all this said - I may have scared you... but remember the good part... the drugs are killing the beast....and the side effect are temporary.. Now to the good part. I finished my last taxol on Nov 1 2005 and my last Herceptin June 2006... and I had more side effects than the average person.... Today Feb 2007, I am back living my life... healthy... keeping up with my old antics... I am a person that others routinely laughed and said that the Chemo made me where they could keep up with me... So please look at this treatment time as just a time that you must slow down to get ready for the rest of your healthy life...

Take Care... God Bless....

Susan

LesleyH

Hi Deb,

Susan has given you the most complete answer possible. So I ditto it all. I totally agree with Susan that Taxol is so much easier than A/C. I would feel waves of nausea now and again from Taxol, but I never had to take the drugs for it like I did when I was on the A/C. (I had 6 A/C two weeks apart. My hair started growing back slowly on the Taxol. My nails fell off. I walked 5 miles every day. I did have a severe allergic reaction to the Benadryl and ended up in the ER. After that, I had it without the Bendadryl and was fine. I didn't gain weight, but I didn't lose it as rapidly as I had when on A/C. I did get slight peripheral neuropathy which seemed to clear up, but has flared up again on the Tamoxifen.

I think this round of chemo will feel so much easier.

Hugs.

Lesley

deb2001

LesleyH said:

Hi Deb,

Susan has given you the most complete answer possible. So I ditto it all. I totally agree with Susan that Taxol is so much easier than A/C. I would feel waves of nausea now and again from Taxol, but I never had to take the drugs for it like I did when I was on the A/C. (I had 6 A/C two weeks apart. My hair started growing back slowly on the Taxol. My nails fell off. I walked 5 miles every day. I did have a severe allergic reaction to the Benadryl and ended up in the ER. After that, I had it without the Bendadryl and was fine. I didn't gain weight, but I didn't lose it as rapidly as I had when on A/C. I did get slight peripheral neuropathy which seemed to clear up, but has flared up again on the Tamoxifen.

I think this round of chemo will feel so much easier.

Hugs.

Lesley

I turly thank God for you. Thanks so much for the info. Can you tell me a little more about the benadyl reaction. WHat did they tell you about why the reaction was so severe??

deb2001

LesleyH said:

Hi Deb,

Susan has given you the most complete answer possible. So I ditto it all. I totally agree with Susan that Taxol is so much easier than A/C. I would feel waves of nausea now and again from Taxol, but I never had to take the drugs for it like I did when I was on the A/C. (I had 6 A/C two weeks apart. My hair started growing back slowly on the Taxol. My nails fell off. I walked 5 miles every day. I did have a severe allergic reaction to the Benadryl and ended up in the ER. After that, I had it without the Bendadryl and was fine. I didn't gain weight, but I didn't lose it as rapidly as I had when on A/C. I did get slight peripheral neuropathy which seemed to clear up, but has flared up again on the Tamoxifen.

I think this round of chemo will feel so much easier.

Hugs.

Lesley

I turly thank God for you. Thanks so much for the info. Can you tell me a little more about the benadyl reaction. WHat did they tell you about why the reaction was so severe??

KathiM

Deb,
Like Susan, the AC was MUCH worse for me.

Having heard the 'scaries' with Taxol of an allergic reaction, I INSISTED that the first infusion go VERY, VERY SLOWLY. AND had my pre-meds. AND (having learned the trick from the AC) I drank 2 quarts of plain water the day before, day of, and day after infusion.

The worst I got was the 'Taxol tingles'---tingling in my fingers and toes----but 2 months after infusions stopped, I had NO lingering side effects.

I am writing this almost a year post ANY treatment...stage II BC I fought...and am so well that my onc said the other day "Are you SURE you had cancer?????".

Herceptin, as you may know, can affect the heart. Be sure to report IMMMEDIATELY any changes in rhythm, etc.

But, to echo, this stuff is killing the bad guy, and even tho it DOES have it's own sides, the ultimate goal is to defeat the beast.

REMEMBER your WATER!!!!

Hugs, Kathi

LesleyH

deb2001 said:

I turly thank God for you. Thanks so much for the info. Can you tell me a little more about the benadyl reaction. WHat did they tell you about why the reaction was so severe??

After the Benadryl infusion started, I felt my heart pounding. A visitor called a nurse, but my blood pressure went up and pulse became very rapid and I started having uncontrollable muscle spasms. It loooked as though I was having a grand mal seizure but I was fully conscious. My heart rate was almost 200 and they were worried that if my BP went any higher I would have a stroke. I had to have IV Ativan and was sent to the ER for the rest of the day. I reported it to the FDA, but you know they don't really care. I then looked it up and bad reactions to Benadryl are not uncommon - especially the muscle spasms. I am now NEVER to take an antihistimine again. The next time could kill me. (I used to take a Benadryl every now and again with no problem.) What I realize now, was that I felt really ill and had visual disturbances after the first Taxol and Benadryl, but I thought it was due to the Taxol. It wasn't. It was due to the Benadryl. The second time I had the infusion was when I had the reaction. So, you should not expect severe side effects. But report EVERY single thing. And please take someone with you or have your bell right near you.

Hugs.

Lesley

deb2001

LesleyH said:

After the Benadryl infusion started, I felt my heart pounding. A visitor called a nurse, but my blood pressure went up and pulse became very rapid and I started having uncontrollable muscle spasms. It loooked as though I was having a grand mal seizure but I was fully conscious. My heart rate was almost 200 and they were worried that if my BP went any higher I would have a stroke. I had to have IV Ativan and was sent to the ER for the rest of the day. I reported it to the FDA, but you know they don't really care. I then looked it up and bad reactions to Benadryl are not uncommon - especially the muscle spasms. I am now NEVER to take an antihistimine again. The next time could kill me. (I used to take a Benadryl every now and again with no problem.) What I realize now, was that I felt really ill and had visual disturbances after the first Taxol and Benadryl, but I thought it was due to the Taxol. It wasn't. It was due to the Benadryl. The second time I had the infusion was when I had the reaction. So, you should not expect severe side effects. But report EVERY single thing. And please take someone with you or have your bell right near you.

Hugs.

Lesley

Thanks so much!
All of this will benefit me greatly!!!!!!