What to expect when getting taxol/herceptin infusions ?

Meeks

Hello. I am getting my chemo port installed today and will be starting taxol/herceptin in a week or so. Would like to hear from others who have been through it. Especially side effects-which they had, when they started and how they relieved them (if they could). Thank you.

Jouska

Your doctor will be prescribing anti nausea medicine and also something like benedryl or zyrtec for any possible allergic reaction. You may get also get either as part of your infusion. You may also be prescribed a steroid like dexamethasone as well. These are all for the Taxol. Herceptin really has minimal side effects. I had Herceptin as part of my chemo and then separately after chemo and never had any reaction to the Herceptin at all. Side effects from the Taxol may include diarrhea, but that is usually a few days later. You will likely experience some tiredness. They work very hard to minimize any side effects and you get anything like a rash or fever, you should let them know. Glad you are getting a port, it really makes all the difference in the infusion process. Wishing you well. Chemo is tough, but it is survivable.

omaalyce

When I was on Taxol I tried to keep my hands and feet out of the sun as well as iced them during chemo. The hope was to prevent my nails from peeling off. I did not lose any toenails but did lose 8 fingernails. They do not break off they peel off. I was told to take an Aleve and a Claritan starting the day of and for for days after to help with joint pain. I had the Neulasta patch to help reduce the chance of infection due to the low white cell count (www.neulasta.com). I wound up with Peripheral Neuropathy which the doctor says is permanent-I'm 4 years NED at this point. Mouth sores can happen, there are great over the counter mouth washes available and if they don't help you can ask for Magic Mouthwash that the oncologist prescribes and the pharmacist makes-it works great. I was really tired during my Taxol period much more then during my first series of chemo. The oncologist gave me Zofran for my nausea for both series of chemo. I was given a Lidocaine cream to put on my port an hour before going in for my infusion, you put it on the port then place Saran Wrap over it-leave it like that until the nurse remove4s it, it helps numb the area before they use the port. I did use it and it was great. I recently went to an allergist and he uses the same cream before testing you, it does help. Mention any and all symptoms that seem out of the ordinary to your team, what you may think is not worth asking about may be very important. I wound up with such low white blood counts that two days after my infusion I would go in for fluids. Again this doe not happen to everyone but it could. I had chemo on Tuesday and fluids on Thursday and Friday for all 8 of my infusions.

There are lots of great articles on the Blog page (I have an article there that Greg allowed me to post-it's Tips I learned during my journey)-lots of great shares and inspirational thoughts, posters etc.

I know a lot of the wonderful folks on this amazing site will reach out to you. The BIGGEST thing to remember is we all react differently and what we went through does not necessarily mean you will. This is a great avenue to reach out and ask for others experiences. I wish you well and we are here for you.

msesq

I found drinking a 7-11 Slurpee of other finely crushed ice during during the Taxol infusion helped save my taste buds. If I had to go through it again I'd try the cold cap to save my hair. I spend a lot of money on wigs but they were horribly uncomfortable. Magic mouthwash work great if your mouth feels like sandpaper. I had diarrhea from the infusions and initially I didn't communicate to my MD how bad it was. I kept track of it when I missed a family wedding and got Rx when I was able to tell the MD I was going more than 10 times a day.

The worst part for me was the Neulasta shot the day after. I would spend 24 hours in a lot of pain. I tried the Claritin trick but it didn't work for me.

The Herceptin infusions were nothing, I used to get them on the way to work. The only side effect was a drippy nose.

BuckeyeShelby

I did taxol/carboplatin. Hair loss about 2 and a half weeks after my first infusion. Chemo induced peripheral neuropathy -- the gift that keeps giving. I completed treatment Feb 2013 -- for some people the neuropathy resolves. Not for me... That is the worse ongong issue. The worst issue at the moment was severe foot, ankle, lower leg pain. And it wasn't orthopedic, as I couldn't move an get relief. Happened on the 2nd day following infusion. First time, it was a Saturday, and I called the on call oncologist. Who was a bloody idiot. Oh, go take a Tylenol. He didn't bother to tell me it would ease in a day or two. I thought I was going to be in that amount of pain for 18 weeks... I discussed with MY oncologist on Monday, and I ended up drugging myself into oblivion one day every 3 weeks on Norco, which in an opiod. But I didn't get the typical barfing or nausea or taste change. There is a list of side effects. I can guarantee you won't get all of 'em. And you might get something NOT on the list. Keep in touch w/your oncology team. They can give you meds or hints to help alleviate some of the issues. Good luck!

legaljen1969

I have a question for those who lose nails. Do they ever come back? I haven't had to undergo chemo, but I see people talking about losing fingernails or toenails. I'm sorry. It's just a nosey curiosity question.

Ashera

Hi Jen! I too, had the carboplatin and Taxotere combo, along with Herceptin/Perjeta....
My fingernails started showing horizontal 'rings' after every infusion which turned into bumpy ridges after the next one. As these grew, the nails started peeling up closest to the fingertip. A couple of nails actually lifted up off the nailbed and became oozy, with a not great smell, and discolored. They never came completely off but were extremely sore. As the infusions ended - the ridges of the nails continued to grow and peel across the tip. The first part of the nail that grew in from the cuticle after last infusion, was full healthy layers. I'd say it took 7 or so months to finally get totally in.

Now - my toes! My two big toes started turning dark, and lifting of the nail bed and got so bad that a podiatrist had to remove both in his office. 'Taxo-toes' he called them. It took a year for them to finally grow to the tip again. Underneath a removed toenail, the nailbed forms a pliable but very thin covering which is somewhat protective but still - the toe is painful with shoes. I was careful to wear super clean socks daily and had only one pair of hiking-boots that seemed to protect my toes and not hurt. The other toenails did not suffer the same fate.

Ashera

Meeks - please know, as others have said, that not all people get all side effects. Some se's will come on early and last a while but disappear. Some happen only once during a specific round.
Mouth sores, I got two days after every infusion and seemed to be horrible for a few days and then clear up. I used the compounded mouthwash my pharmacy mixed up fresh every round. It contained lidocaine, benadryl, and Maalox and I thought tasted like crushed pastel wedding mints! I'd swish around and then swallow, numbing the mouth and throat.

Throughout my chemo - my taste was incredibly off. I could eat no bread, cookie, or cracker - it tasted like sand and I couldn't swallow. Sadly, I had stocked up on easy, simple shortbread cookies and during chemo - the nurses would always pass out Lorna Doon Cookies Small bites of dark meat chicken worked - white meat didn't. I seemed to live on tapioca pudding and bottles of Muscle Milk - only vanilla or chocolate - gagged on the cookies/cream and the strawberry?? Had to reject the first sip. But others loved those two I didn't.

I have a dear neighbor going through chemo right now - on Taxo/Carbo - 4th round and has had NO mouth issues and has actually gained a bit! Her nails seem fine for now as well.

You may get diarrhea. Some do for a while - then it eases. I, unfortunately
had over 10 a day - most of the rounds and had to take prescription Lomotil daily. That was my most difficult SE.

Peripheral Neuropathy checked in around the 5th round - with pain in my lower legs and numbness in my feet. And it is still an extra gift with purchase at 5 years. Just learned a more mindful
way of stepping and make sure my feet are on the right feet as I can't feel!

All of these things are doable. Some...were only around during the chemo. You may get your own set of strange things...or not many at all. Whatever...do not fail to call your oncologist - someone should answer your call 24/7 and reassure you or have solutions. Don't suffer at all with anything that is different - We'll have someone here at What Next that has seen/had what you are experiencing! And we, too, are open 24 hrs a day!!
Blesssings...

Abendintheroad

I had a reaction to the Taxol. Two days after my first infusion - on a Tuesday - I started to have trouble breathing. By Friday I went to the emergency room where they took an x-ray of my lungs and found no problems. I had no temp and no other symptoms except that I couldn't take a deep breath. The next Tuesday I got another infusion and by Friday I thought I was going to die. I could barely breathe. Still no temp and no other symptoms but went to the ER where an x-ray showed fluid in one lung but no bacterial infection or other cause. I had researched possible Taxol side effects before I went in and told the ER doctor what I had found. He did some checking and came back and agreed that it was the Taxol causing the problems. Evidently this is not a well known or common side effect but I found out about it on this site. They kept me in the hospital for the night as a precaution and I had to wait a few weeks before starting a new drug. I am fine now and I'm glad that someone else had shared their story.

Ashera

Abendintheroad...I am so sorry for your very scary experience. I had SOB (shortness of breath) the whole time during chemo. It was so bad at times I couldn't even put my clothes on or walk across the room. This was just part of 'it' I thought but...maybe not?

Ydnar2xer

I took Taxol by mouth for 5 years, which was supposed to prevent a recurrence of my b/c. However, when I got another type of b/c nine years later, I took TCH and then another year of Herceptin. I hated the Carboplatin weeks (every 3rd week) bc a few days after the infusion, I felt like I was coming down with the flu--tired, CRANKY, body aches. But the Herceptin for the year was wonderful. No ill effects at all. Good luck.