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Taxol Sensitivity

DebiR
Posts: 38
Joined: Jul 2014

I had my second round of chemo today.  I am getting the standard Carbo/Taxol.  During the first round I had a reaction to the Taxol, flushing red face, cramps in my legs and feet, cough, a little difficulty breathing.  They immediately stopped the IV and then gave some additional Benadryl.   Its a big deal with the nurse pressing the panic button and about 5 other nurses enter the room, blood pressure, oxygen levels etc. taken. The IV was then restarted at 25% speed and then bumped up to 50%, 75% and then to 100%.  It took longer but was OK.

Today they gave some extra pre-meds.  I don’t remember what but they upped the Benadryl and I think added something.  They started the IV at 25% right at the beginning.  I still had a reaction.  Not as many symptoms this time with only the flushing red face and shortness of breath.  They stopped the IV, waited and then restarted. No meds were added and I was again able to complete it.

But now they say they won’t reattempt the Taxol again and I have to switch to a different drug.  I am in the trial GOG-0258 which a phase 3 trial that is studying carboplatin and paclitaxel to see how well they work with or without cisplatin and radiation therapy.  I was randomized to the chemo only (standard treatment) group.  I’m assuming that not using Taxol will eliminate me from the trial.  Although I’m getting the standard treatment I would get more follow-up testing etc. which I really liked the idea of and I also like that this will hopefully help some of our future sisters so this will be disappointing to me.

I’m also concerned that Taxol is the drug of choice here (the best option to kick this to the curb) and also the alternative drug (Adriamycin) must be given in a port because if the drug leaks out of the vein and under the skin, it may damage the tissue, causing pain, ulceration, and scarring.  Since I was only doing 6 rounds and have no problems with an IV it wasn’t recommended for me to get a port and I really didn’t want to deal with one.

Just wondering if anyone else faced this and if no further attempts were made after 2.  I found an article here http://jco.ascopubs.org/content/18/1/102.full where a Cleveland Clinic study used a combination that also included taking oral dexamethasone 36 hours and 12 hours before chemo (although the study is a bit old).  If the results were still a sensitivity after a 3rd attempt then no further attempts were made.

Also wondering if anyone else received Adriamycin and Carbo?

Thanks!

Debi

UPSC 3A (ovaries and pelvic wash)

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I too had a reaction to Taxol with my first infusion.  They doubled my steroids and ran the taxol at a slow rate.  Whenever they tried to  increase the rate I had a reaction.  It takes me about  5 hours to get the taxol.  But I have been able to still receive it.

some people have switched to taxotere if they have had a reaction to taxol.  Of course if you are in a study, they have certain criteria to meet.  

I also had a reaction to carboplatin during my 9 th dose, so I was switched to cisplatin.  It takes me all day to get the Cisplatin, too.

My gyn/ono in FL talked about using Adriamycin if the taxol/ cisplatin stopped working for me.  Adriamycin is in the same drug category as Doxil, just a much older drug.  As a nurse I remember it being red.  Someone on one of the boards called it " the red devil".

my onocologist in IL does recommend taking the dexamethasone the night before chemo, and they still give steroids prior to chemo.

I did not get a port until after my fourth chemo.  My doctor said if I had good veins I did not need one.  I did have good veins and now I have no veins.  The chemo really ruined them. It took 3 sticks for lab and 2 sticks for chemo all that day.  The port is great for lab draws, CAT scans as well as getting chemo.  They wanted to put in a PICC line for my last two chemos, but since I knew I would need chemo again I chose the port.  I just am sorry I did not get one right away.

all chemo will cause damage if it comes out of the vein.  Good luck with the rest of your treatments.

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Hi Debi:

So sorry to hear about your reaction to Taxol.  I too had a reaction.   It was as soon as it started.    I was switched from Carbo/Taxol to Carbo/Gemzar.   Instead of going once a month.  I had to go every two weeks.  I was fine with that.

Hope you can find something that works good for you.

 

Kathy

DebiR
Posts: 38
Joined: Jul 2014

On Monday I called an talked to the research nurse on my case about the Cleveland Clinic Desensitization Protocol for Patients Experiencing a Second Hypersensitivity Reaction After the Reinstitution of Paclitaxel.  She said they had also used this in the past and would speak to my doctor about it.  I got word today that they are going to give this a try so I will get at least one more round of the carbo/taxol.  Hopefully this will work and I can stay in the trial and on the standard course of treatment.  My third round should start on Aug 26 baring any delays.

 

Debi

Judemo
Posts: 107
Joined: Jun 2014

Hi Debi! Great to hear you get to stay in the trial (I'm going to just say for sure you'll get to stay in it!!) Wonderful news! I'm thinking about you and wondering how you've been feeling since your last chemo experience. Keep us informed of how things are going for you! 

Jude

DebiR
Posts: 38
Joined: Jul 2014

It shows also that you really have to educate and advocate for yourself.  I could have just as easily said OK, what’s next but I read and learned more and asked why not this?

And I’m feeling great.  It’s been a week since my second round and I’m working full-time, do some consulting plus I have an online business that sells quilting and embroidery supplies.  I’m lucky my job is IT related and I work from home. Plus I have my sister come help me twice a week after work.  I’m feeling a bit more neuropathy in my toes and started to feel in in 3 fingers on both hands.  I really don’t like that feeling but today it feels a bit less.  The first round I had a lot of bone and muscle pain in my legs but they added some oxycodone to the ibuprofen I’ve had very little pain this time.

I had my hair shaved last Wednesday as it was really starting to fall out by 3 weeks after my first round.  I am good friends with my hair stylist who owns a small salon.  I came after the salon was closed and had a party.  Why not make it fun?  My mom, sister, two nieces and my niece’s friend were there.  I picked up some wonderful cupcakes (chocolate covered strawberry, watermelon, red velvet and Boston cream - yummy) and my mom had made some cute toppers that were girls with wigs and one with a cap for me.

I cried for a minute when she first started but really it wasn’t bad.  I actually love the wig I got and have to say it’s really nice to be able to get ready quickly and not have to deal with my hair.  I also got a couple cute caps/scarves and wear those mostly.  I have kind of a cute little head and I don’t even mind seeing myself bald.  I thought I would but really don’t. 

Debi

UPSC 3A

Pat51
Posts: 130
Joined: Feb 2011

Hi,

I also have UPSC.  When I was in chemo, I had Carboplatin and Taxotere.  I had a severe reaction to the Taxotere within the first few minutes the infusion was started.  They pulled the IV and then gave me more benedryl and a lot of steroids.  I do agree that a reaction to the the drug produces a lot of attention.  I had the head chemo nurse, 5 other nurses, a few aides, my PA, my doctor, another doctor, inhilation therapy and a person with a crash cart!!  I did finish the taxotere that day.   After that I took large doses of oral steroids the night before  treatments, the morning of the treatment and had IV steroids before starting the chemo.  Then they ran the chemo in very slowly.  Just  before starting the chemo they gave me a injection of lorazapam.  I was in dreamland within 5 minutes and woke up shortly before it was finished.  The treatments usually took about 8 hours.  Then I also took nulasta shots to help.   I did manage to finish all six treatments.  The last treatment was at a half dose of taxotere because of the neoropathy that it has caused.  I did not have a port or picc line and did have chemo leak through the veins.  I did have scarring of both arms, which I was told would stay forever, but has diminished over time and is not too noticable at this time.   I wish you good luck with the drug and hope that they will find a way for you to tolerate the drug better and stay on the trial.

Pat

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

UPSC Here also.  Don't know if it was just me of it it was standard{everyone I talked to had it done the same way }, but where I was, M D Anderson in Houston, they did a 30 minute IV drip full of Benedryl and steroids at fast delivery before every chemo infusion.  I had the Taxol/Carboplatan also and never once had a reaction to either.  Was never sick to my stomach, and after 8 hours of infushion, I drove my self home 90 miles away.  Just got lucky I guess!  Debra

DebiR
Posts: 38
Joined: Jul 2014

Good News!  I had my 3rd round of carbo/taxol yesterday with the desensitizing protocol and no reaction!  I had to take 20mg of dexamethasone (steroid) and 20mg of Pepcid Sunday night at 10pm (36 hrs prior), This was then repeated on Monday at 10pm (24 hrs prior) and Tuesday morning at 4am (6 hrs prior).  My chemo was at 10am on Tuesday.  I then got another 20mg of dexamethasone, 50 mg of diphenhydramine (Benadryl), and 20 mg of famotidine (Pepcid) before starting the paclitaxel.  The first IV of taxol was 2mg diluted in 100ml of saline over 30 minutes, followed by another IV of 10mg of taxol diluted in 100ml of saline delivered over 30 minutes and then I got the remaining taxol in another 100mg of saline that took 3 hours. This was followed by the carboplatin which took 30 minutes. It was a long day as I had to arrive by 9am for my follow-up with the doctor first and didn’t finish until a little after 5pm but so happy that I didn’t react.

Hopefully posting all of this will help someone else in the future if they have a sensitivity like I did.  This means I can continue on this carbo/taxol regimen and I stay in the GOG-0258 trial unless the neuropathy in my fingers and toes gets too bad.  Right now I am taking vitamin B6 to help with this and it does seem to minimize it.  It's worse in my toes than my fingers.

I'm at the halfway point - 3 down and 3 more to go!

Debi

UPSC 3A

 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Congratulations, Debi, you are halfway through the chemo!  I am glad to see that you are able to stay in the GOG study. It is tough to lose one's hair, but having nice wigs sure does help.  I also liked the fact that I didn't have to spend much time at all in caring for my wigs. I use to spend much more time caring for my real hair.  Now, 5 months after finishing my chemo with Taxol and Carboplatin, I have sprouted very curly hair.  I use to have slightly wavy hair.  Now, I don't even have to comb it it is so curly!   

Wishing you the best,

Cathy

(UPSC Stage IIIA) 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Glad the desensitization worked for you.  Glad you will be able to continue to get the taxol.   I hope the medication continues to work for you.  3 down - 3 to go.  You are halfway there.  Good for you.  I am surprised Pepcid was part of the pre- chemo protocol.  I understand the decadron and Benadryl.  Hope you have good days between your chemo sessions.

ConnieSW
Posts: 1545
Joined: Jun 2012

Ya gotta give us a picture

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Connie,

I've been thinking about it, but am a little lacking in my abilities to know what to do with photos on a computer.....It's terrible, since I own a digital camera!  I just keep buying more memory cards..........:).  By the way, the name Abbycat2 is from my tuxedo kitty named Abby. Right smack in the middle of her white chest is a heart-shaped black marking.    I also have a kitty named Tippy (Abby's sister) and another named Mew Mews who despises the two young sisters.  I have to keep them separate, or perhaps get Jackson the "Cat Whisperer" to come help me cope with the feline hostility.

Cathy

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