Dose Dense Taxol, every 2 weeks x 4 ?

Anonymous

Dose Dense Taxol, every 2 weeks x 4 ?

AgathaNYC

Hi, everyone.

I just finished up A/C and in 2 weeks I will be moving on to DD Taxol. The plan is to have dose dense infusions, one every two weeks, for 4 cycles. I may or may not get Neulasta with is depending on my counts.

There seems to be more people doing the 12 weekly Taxol infusions on these boards. I'd love to hear from those who have done the DD regimen. From only reading about Taxol, neuropathy is my main concern - but again I "don't know what I don't know."

Here are some of the gazillion side effect questions I have, not in order of importance - just in order they jump out of my chemo brain!

• I didn't lose all my hair on A/C - should I expect the rest to come out on Taxol?
• Did you need Neulasta?
• Eyebrows and eyelashes... did they fall out during treatment or after?
• If you noticed numbness and tingling in your hands and feet when did that start?
• Did you ice your hands and feet during infusions?
• How uncomfortable was the skin on your hands and feet? (already tender from A/C)
• Did you lose any nails? (my big toes already dark from A/C)
• Did you stop treatment due to side effects? If so after which infusion? Did you switch over to the weekly plan?
• What was the 2 week cycle like re: fatigue (for instance on A/C I feel great days 1-3)
• Are mouth sores common?

Thanks so much for sharing your experience!

Jnnmn7

Hi, I did DD Taxol so I'll help out w your questions.

I lost all my hair on AC, started to have fuzz during Taxol. My eyebrows and lashes fell out by the end of Taxol.

I did get Neulasta.

I barely had neuropathy during and do not have it after. I guess more people usually do experience this. No icing. No skin or nail issues either. Did chew ice though, had mouth sores from AC.

I finished all 4 cycles. For me by the end of day 2 the muscle aches set in and day 3-5 I was very achy, muscle and bone pain, my teeth would even hurt. But after day 5 I would feel like myself again.

Hang in there! You are half way. I'm sure you could switch to weekly if it's too rough on you but DD is definitely doable and I'm glad I was done w it sooner than later.

Hopeful17

hi

I also did did A/C followed by Taxol every 2 weeks. I found it much more tolerable than A/C.

I had very bad nausea with A/C, much much less with Taxol. I did get Neulasta, and didn't have a problem with low neutrophil count. I found that day 2 -3 I had some bone pain, so took tramadol for that. Also strange lack of taste, everything tasted like cardboard for about a week.

No mouth sores, rinsed with salt water.

I think I had lost all my hair by the end of A/c, except for few hairs, but every body hair went then during Taxol. Eyelashes and brows stayed till few weeks after last Taxol.

I had tingling and n my fingers, and sometimes face, but be sure to tell them if this happens as they may adjust dose to prevent any damage.

I didn't lose any nails, just got some bulges on them, and had a few nails kind of lift of the nail bed, but not actually come off.

Hope it goes well for you anyway, I would say after DD A/C you should find it easier going.

Best of luck

Hopeful17

oh and no I didn't ice during the chemo, wasn't offered it anyway!

AgathaNYC

Thank you all for your replies!

I start the DD Taxol on Friday. You've made me less nervous :-)

Shellsatthebeach

Hi Agatha, I had dose dense Taxol. Here are the answers to your questions:

• I didn't lose all my hair on A/C - should I expect the rest to come out on Taxol? I lost all my hair on my head after my third treatment of AC. After Taxol, I lost eyelashes and eye brows.
• Did you need Neulasta? I wish I did not take it since it made my white blood count high. I may have been fine without it.
• Eyebrows and eyelashes... did they fall out during treatment or after? Most fell out with treatment, but the sparse I had continue to fall out a few weeks after treatment. Good news is they grew back rather quickly.
• If you noticed numbness and tingling in your hands and feet when did that start? I did notice some during treatment, but do not have neuropathy or any permanent damage.
• Did you ice your hands and feet during infusions? No way. Sounded too complicated to me. I just tried my best to rest during treatments.
• Did you lose any nails? (my big toes already dark from A/C) No problems with nails falling off or turning color. They are a little weaker and will break easily, but grow back quickly.
• Did you stop treatment due to side effects? If so after which infusion? Did you switch over to the weekly plan? No
• What was the 2 week cycle like re: fatigue (for instance on A/C I feel great days 1-3) pretty much the same with Taxol. It was slightly longer to bounce back. Mostly bone pain lingered.
• Are mouth sores common? Yes, it can be controlled using mild toothpaste. They also have mouth wash that can help, but I didn't need it. Try to keep your mouth moist.

AgathaNYC

Dear ShellsontheBeach - Thank you SO much for taking the time to so thoroughly answer my questions. I start DD Taxol this Friday and pretty nervous about the neuropathy risk. It was good to hear you didn't have any.

Thanks again!

CA-Sunshine

Hi All,

I too started DD taxol,  on Tuesday Nov 21  #1/4. This is day 6 and I am having bone pain, and tingling in both feet. I am taking Claritin, ES Tylenol and Norco. Nothing is really working for the pain. I soaked in Epsom salt also. I don't know what to do. I feel worse with taxol than I did with  AC

 

AgathaNYC

Dear CA-Sunshine,

Hang in there. I guess the best thing about DD Taxol is that it's over sooner?

I didn't have any nausea with AC. A lot of people say that Taxol is easier than AC, including my oncologist. I wonder if those people struggled with nausea on AC so it's a huge relief to have that out of the picture.

I hope that days 7-14 are a lot kinder to you!

Kaffern

Hello everyone and thanks for helpful posts. CA Sunshine and Agatha, I hope things are ok.

I am on Day 6 of #1/4 DD Taxol too. Eve of Day 2 I experienced start of muscle pain and it has been quite intense. All over. But I am finding chest and head pain to be alarming. Have taken Tylenol 3 at night and it works somewhat. Disturbed by high heart rate too.

Nerve pain also started Day 2 but taking Gabapentin helps that. I had Hand-foot Syndrome with AC and don't want to spend more days not being able to walk.

I had generalized nausea with AC but week 2 was always ok. This Taxol was supposed to be easier but jury is out on that.

PeachyJeanne

I did neo-adjuvant dose dense AC+T chemo (4 AC followed by 4 Taxol). I did not experience horrible side effects on AC. I had the usual hair loss, taste bud changes, fatigue and some joint pain but it was tolerable. My nails did not fall off but fingernails did get the white halo look. I applied Nail Envy but don't know if that helped with keeping them on or not. I did chew ice while on AC and did not get mouth sores. I did put my feet and hands in ice bags while doing Taxol. The middle 3 toes on both feet do have some neuropathy. It is more annoying than painful during the day. Feels like socks are bunched up. At night when I lay down it feels worse and can be a little painful in that they burn and tingle a bit more. The covers feel very heavy on my feet if too tight at the bottom of the bed. Loosening them up seems to help.

I was actually scared to start Taxol because I thought I was "opposite world" and since I tolerated AC fairly well that I would then get the whammy of side effects on Taxol. Luckily that didn't happen.

I did not have major side effects on Taxol, but I did start running a fever that got progressively worse. I had no other symptoms other than fever and the malaise that comes with fever. After 2 chest x-rays and finally a CT scan, I was found to have pneumonitis. Inflammation of the lungs is a side effect of chemo but because I was running a fever, it was determined to be a bacterial infection. I was prescribed the antibiotic Levaquin and within a day felt much better. I did not miss an infusion because of it.

I did get neulasta shots after each AC infusion and every other Taxol. They said they did it during Taxol to keep my counts up to ensure I'd be ready for surgery. I did take Claritin regularly during chemo. Bone/joint pain was primarily in hips and knees.

The most annoying thing about chemo was the unknown. Nobody can ever tell you definitively whether you will experience a side effect or if you do, to what extreme it will be. Drove me bonkers. I face the same thing with hormone therapy. Some women tolerate Tamoxifin fairly well, and some don't. Argh!

Good luck to all going through this. Hang in there.

Kaffern

So true about the unknown. I know that every time I experience a side-effect, the main worry is if it will worsen.

Hope your surgery recovery going well

CA-Sunshine

All everyone,

 Just checking in feeling a little better. Both bone and neuropathy pain has lessened. I have been taking my extra strength Tylenol and gabapentin in the am upon awaken. 6 hour later I take gabapentin and 1 Norco.  At night I have 1 Norco  and gabapentin. It is day 9 of post 1/4 taxol. I am worried about my next scheduled infuse this  Tuesday, December 5. The unknown  can definitively drive you bonkers. 

CA-Sunshine

Another thing is it just me? but is anyone experiencing being cold when it isn't  cold at all in the room.. I layer up my clothing  because  I am feeling cold then I will have a hot flash.  I can not wait to January 2 , 2018. Have a great day everyone  and remember you are not alone in the fight.

gardengypsy

I was a DD girl. My neuropathy began slightly during the treatment and began kicking my ass 6 months after Taxol ended. A year and a half after chemo ended, it is still going strong

I started neulasta, but after a couple infusions, the onc decided it was not necessary.

My big toes had horrid blisters that would not heal till long after chemo ended.

Yes, a friend of mine began with 12 weekly Taxol treatments. Why this change in protocol?

AgathaNYC

Hello, ladies! I got my first of 4 Taxol infusions under my belt today. No bad reactions during the infusion, but WOW was it long. Tomorrow I go for my Neulasta shot. My oncologist told me that's when the bone pain might kick in - I hope it's not too bad. Keep your fingers crossed for me please.

CA-Sunshine: No, I seem never to get cold. Maybe a bit once I'm covered in sweat from a hot flash and have kicked off all my covers However, I love the cold and my apartment is unbearably hot from radiator heat.

GardenGypsy: Ugh, I'm sorry you are still dealing with the neuropathy. I hope you get some relief. Thank you for the information that you had a delayed on-set.

Hope everyone has a good weekend!

gardengypsy

Agatha- Best of luck! Lots of questions around the effects ofTaxol/Taxotere these days.

Kicks

CA-sunshine -

I was'cool/'coldish' on neoadjuvant DD A/C (almost always 'feel' cold anyway) but on adjuvant Taxol I 'FROZE' all the time. (I didnt do DD Taxol, did 12 weekly Taxol.). My temperature ran about 96 all the time and did drop to 94 during some infusions.

I had to have one of their glassed in cubicles (with a bed) that had it's own thermostat so the heat could be kicked up as high as it would go. They also had to keep piling on warmed blankets to try to warm me up even with the heat turned up. I possibly did go below 94 sometimes but was never told. I know that I did drop to at least 94 because I woke up to see the monitor showing that. (The RNs would always say "Nighty Night" as soon as they started the IV Benadryl as I went to sleep within seconds of it started and slept til 20 mins before end of infusion, woke up as alert as I had been before the Benadryl.) I, to this day (was about 1/3 of the way through Taxol 8 yrs ago), still stay within mid 96 to mid 97 so am always cool (sometimes cold) when no one else is.

Pain and neuropathy were never an issue for me. Utter and complete EXHAUSTION was though. I 'existed' basically either in bed or on couch watching TV.

1/2 way through Taxol, I did develope very low potassium levels and had to go on large doses of potassium to keep it in 'normal' range. Still, to this day, I have to take potassium (not large doses anymore) to keep it up in 'normal' range.

We are each so unique with our individual experiences.

AgathaNYC

Thanks for sharing your Taxol experience, Kicks. It's good to hear from someone who didn't get bad bone pain.

Although my doctor and nurses say Claritin isn't proven to help reduce the bone pain Neulasta+Taxol can bring, I'm going to listen to the ladies in this community that say it does. I had my Neulasta shot yesterday - should have started the Claritin earlier, but - better late than never?

I'm also going to try to get a walk in today in hopes that will help.

Hope everyone is having a good weekend!

Kicks

I did not have Neulasta during Taxol but had had it during A/C. I had no issues with pain from it so never tried Claritin. For me, almost to the minute, 2 hrs after injection I would go to sleep for 2 yrs and then almost to the minute 2 hrs after I went to sleep, I'd wake up feeling great. Dr T. Said for me because my blood work had stayed so good during A/C that there was no reason to have it during Taxol (unless an issue developed - which didn't). Yeah - I'm 'weird' in so many ways .

I have seen so many say that Claritin (proven or not) worked great for them.