OMG Taxol PAIN

Robyn66 · February 2009

Hi guys,

I haven't been around for a while but we made the big switch from A/C to Taxol and I was really excited because the Taxol was supposed to be so much better to tollerate.

Well of course leave it to me to be different.

The day of was fine, the day after, I felt good and then my husband gave me the shot. Which they said was optional because my bloodwork is so good. So about an hour after he gave it to me I began having the most terrible ache from my feet to my hips. Every joint hurt and the bones hurt like hell. I was warned that this was a side effect of taxol but I was also told it was likely that advil would take care of the pain. IT DIDN't TOUCH IT! I was taking 4 advil every 3 hours plus searching through the house for any left over pain meds from EVER. I had some percoset left over from the mastectomy my hubby had some left over codine from some teeth he h ad out. I was b asically insane until Monday morning when I called the doc. I didn't call before then becauese I didn't think they could call anything in. So Monday, my onc said that this was a side affect and most people don't h ave this kind of pain (like only 10%- once again, why cant I have LOTTERY LUCK? I seem to EXCELL on bad side effect luck!!!)

I have been popping vicodin like M&M's I am finally well enough to go back to work today but I am facing taxol 2 next Thursday. I am PRAYING there is a way they can keep this from happening again because I don't know how I am going to survive three more of these treatments!!!

Has anyone had a similar experience? Any survival tips???

Love to all

Robyn

fightinhrd123 · February 2009

I had it, oh it was horrible. By week 2 i was ready to change chemos, I stuck with it though, and finished my last 2, and no cancer (had chemo first). I took vicodin, one every four hours on the clock. The pain was sooo bad i could barely move. But the vicodin kind of helped. The bad pain would hit about 2-3 days after chemo and last about 2 days. However, since i finished chemo, my legs still ache. Not the intense pain, but the "after pain". I am doing hercepin though, and that causes aches, so it could be that. I would stick with it for sure, because for me the taxol worked. Even killed the cancer in my nodes. Just ask your docs for pain meds, and start taking them before the pain hits, around day 2

Good luck,

Laura

cp418 · February 2009

You mentioned your husband gave you a shot. If it was Neulasta many ladies get body aches and flu like symptoms from this shot. I know I certainly did. Taxol gave me numbness and tingling in hands and mostly feet.

fightinhrd123 · February 2009

Oh yeah, the shot gave me the body aches too, i had it with the AC, the taxol pain was completely different

StaceyR · February 2009

I was like you, looking forward to the supposedly easier regimen. So much for that.

Not sure if your pain is from the shot or the Taxol - I never did the Neulasta, with my oncologist's blessing - but I had severe bone pain from my first round of Taxol, too. Piranhas nibbling on my spine, that's how I described it. I was in pure agony. I am a little fuzzy on when the pain went away, but my onco dropped my tx dosage by 10% for the next two rounds and I did much better for those. I guess loading up on the pain meds is probably the best solution. What about acupunture, is that an option for you? (Not meant to be a bad joke about more needles..!)

Anonymous · February 2009

I experienced very few problems with Taxol, although I did develop some neuropathy despite taking L-glutamine to prevent it. But the Neupogen I injected myself with did cause bone pain, especially in my hips. I was using different injection sites each time, alternating among my hips, my thighs, and my arms and I did notice that the pain was worse when I injected anywhere but my upper arms.

If I were you, I'd skip the Neupogen or Neulasta for one round (if your counts are normal, of course) and see if it could be that instead of the chemo.

~Marin

Roya · February 2009

I experienced the same thing with regards to Taxol. The aches and pains would begin on about day 4 or 5 after the infusion and last about a day or so. I would literally take to my bed and tremble from the pain and discomfort. I also took Vicodin for comfort and I was glad to have it!!!!

I took Neulasta when taking A/C but here, we do not take it for Taxol since Taxol does not affect the blood count like A/C does. I guess some docs will give it anyway but in reading the boards have found that just as many don't.

I also developed neuropathy in my finger tips and toes with Taxol so don't be surprised if you begin to feel numbness and tingling in those areas. What I didn't know then was that it can grow worse even after you are done taking Taxol. It can get worse before it gets better. I took the B6 to prevent it and I am sure that made it easier on me but it absolutley did not prevent it altogether.

I completed Taxol in November and noticed in December that the numbness and tingling was progressing into the soles of my feet and that my toes were hurting and feeling cold. I even fell a couple of times due to lack of sensation. My doc said that happens frequently and that the effects of the Taxol can progress for weeks after it is discontinued. It can take 6 months or longer for the S/E's to wear off.

I was put on something similar to Amitriptaline (USA) for nerve pain. Some people are put on Neurontin though. Now it is February and I am only just now starting to notice that my fingertips are beginning to feel like the numbness is going away. I still have numbness in my toes and the soles of my feet but it is slowly getting better. I still take the meds for nerve pain including the Vicodin but am taking a lot less. I take it about twice a day now.

All in all, I would still do this chemo again if I had to. I will do what I have to do in order to be a survivor. But let me tell you...........going thru the S/E's related to chemo has given the word "survivor" a whole new meaning!!!!!!!!!

Deb-from-Ohio · February 2009

I took Claritan the day before, the day of and the day after my Neulasta shot, never bothered me once..i had to have the Neulasta with the A/C but don't with the taxol.....so far no bad bone pains, aches, little numbness in two fingers, feet peeling and dry dry dry eyes but that's it....

Deb

Snappygoddess · February 2009

I finished my A/C and start my Taxol next week. They were all really surprised at how well I did on the AC..very little nausea(of course the anti-nausea drugs worked well) but after my 4th round I was completely wiped out. I have heard that Taxol is easier on the system.. we shall see. As I am finding out things are different for everyone..so all I can do is get my chemo and hope I don't have many problems. I am not looking forward to 12 wks of Taxol..but that just puts me that much closer to being done and being healthier!

So sorry to hear of everyones troubles...hope things get better! Hugs

~Belinda~

Robyn66 · February 2009

The Neulasta shot I had Saturday was my last one. I am hoping that contributed to the pain because it was my last one.

The docs say they can tweak some things to help with this pain I am not supposed to be having.

I have finally gotten up this morning without feeling lousy. And even though I know this is a necessary part of my recovery this looking at the glass as half full is getting a bit OLD right now

Love to all

Robyn

fightinhrd123 · February 2009

Hang in there Robyn, you will get through it!!! I did, and i was so glad i did it when i was done!

Deb-from-Ohio · February 2009

Snappygoddess

The 12 week Taxol is sooooooooooooooo much easier then A/C.I've not had one bit of nausea, very little aches and pains. Main thing I've noticed, like I got it yesterday, today and for the next couple of days, food tastes funny to me, and I get a little tired...........if you do have to take the neulasta which I don't, take a claritan the day before, day of and the day after, even a over the counter, store brand allergy pill works.......it stops the pain of the neulasta shot..I took it when I did the A/C's.....

But you should have no problem with the Taxol, I take it every week , have 7 more weeks to go!

Hugs

Deb

Snappygoddess · February 2009

Deb---I soooooo hope you are right. I really have a feeling that it will go ok. My blood count has stayed good throughout the AC rounds...and the shot never messed with me at all..so I have been very fortunate and I pray that continues.

Congrats on only having 7 more wks to go!!!

cmb35 · February 2009

Robyn,

I had the full gamut of side effects with the AC, everything from mouth sores to thrust to headaches to diahhrea. I was SO looking forward to taxol, because everyone said it was so much easier. Well, I was in that "less than 10%" club too, excruciating bone pain in my legs. The AC was a walk in the park compared to the taxol for me. (I'm not saying this to scare you, but because I felt like I was crazy or something that I had such a terrible reaction to it. You're not crazy!)

I hate taking meds of any kind, but I had my darvocet in my hot little hand, ready to take my next dose the second I was able to. It does suck, but you will get through it. I just needed to accept the fact that I needed to take the pain meds. My onc also recommended L-Glutamine powder, because I also developed some significant neuropathy - I was numb and tingly up to my elbows and knees after the second dose. Scared the heck out of me, and although it took awhile, for the most part, the neuropathy is completely resolved. The tiniest bit of numbness at the very tips of my fingers and toes, I don't even notice any more. I do think the L-Glutamine helped keep the neuropathy in check.

Again, 90% of women have a much easier time with the taxol. And who knows, you might find that you don't have a bad reaction to the second dose. But hang in there if you don't, take the pain meds, and you will get through it. Promise!

runner4life · February 2009

Robin-

Taxol (and Neulasta) left me moaning in bed in "deep bone pain" from pretty much the moment I started it when I reacted to it and was unable to breath. It was terrible and I think you sound like you are doing everything you can. They perscribed vicadin and percocet too along with advil so I was able to rotate the different pain meds and did a pretty good job managing it. I am not sure if anyone mentioned it yet but be really careful about how much acetominifen you are getting each day. For me, the pain got better by my 3rd treatment but I know that others have had different reactions. Hang in there!

LaurelS · February 2009

Robyn,

What you are experiencing is not actual "bone pain" but nerve pain. Taxol is a large molecule and it wrecks havoc on our nerves. The numbness and tingling associated with Taxol in our hands and feet is due to nerve damage from the drug. I am told this resolves within a year to 18months post treatment in most cases. Glutimine can help reduce the damage to nerves. I read somewhere that the dosage must be quite high, 10g/day if I recall correctly. Perhaps a naturopath or your Onc. can clarify dose. I had not found this info. until after I completed the Taxol and was not taking enough during my treatment.

I experienced pain which began approx. 36 hrs post infusion. The pain ran from the base of my skull to my feet. The most painful areas for me were my neck, shoulders, ribs and lower legs. Just touching these areas was painful. Think about it, if your nerve endings are inflamed they are bound to be painful! My oncologist suggested getting out in front of the pain. That is to say, begin taking pain meds just prior to when you usually begin to experience the pain. Since I was consistantly hitting the pain wall at 36 hrs post infusion, I took my Percocet at around 30 hrs and continued it for a day or two around the clock. That regimine really did help. My pain lasted approximately 4 days. It seemed I could back off the narcs and take only Aleve the final day or so.

You have my utmost sympathy, Robyn. I found chemo to be harsh and exhausting, but I was determined to finish. I never thought I'd get through the 8 rounds of ACTH, but here I am 4 months post chemo and feeling much improved and looking forward to a long life.

I will tell you that I did not loose my eyelashes or eyebrows on the AC,but lost them after my last Taxol treatment. They grew back quickly, however once the Taxol ended.

Hang in there!

BFidelis · February 2009

Robyn66, you're not alone. I have almost NO SEs from A/C or Herceptin, but OH the taxol. I had tx on Monday (every 3 weeks). Tuesday would be OK. Wednesday evening it would start. By Thursday morning no OTC pain med could handle it. Called my onc. nurse & got an rx for codeine-3. Took them all day Thursday, Friday & Saturday. By Sunday, would be OK again. After that 1st experience, I just started popping the C3s Wednesday afternoon after Monday tx and kept them up thru Saturday evening. If you don't let the pain get a foothold, it actually takes less meds overall to keep it manageable. Don't worry about "additiction", just take the meds. You'll be past it soon and it will only be a nasty memory. A 'silver lining' in this was that I was just unable to disguise that pain when it started (I was unable to keep up the brave facade.) I think it was only then that DH realized just how much I was going through (even though he had been very supportive.) He became just a little more gentle in voice and appreciative when I was "back to my old self."

Dona Nobis Pacem,

Beth

Robyn66 · February 2009

Thank you all so much!! I am so glad I have all of you!! I am going to cry if I lose my eye lashes and eyebrows at the end of this. It was the last part of "me" I was holding on to. But I have only three treatments left. My next one is this coming Thursday so wish me luck!!

Love to all of you!!!!

Robyn

Lainey64 · February 2009

Robyn - how are you doing? I had my 2nd Taxol on Friday and I'm dying here from my aching body! So far the strongest thing I've taken is Tylenol PM. I'm at work today and taking regular strength Tylenol. Did you doctor give you anything stronger to take? I want to call but I feel like I'm constantly calling them about one thing or another. Since today is day 5 since TX I'm hoping by tomorrow the pain will be gone. I get in the hot shower and just stand there letting the water pound on my poor neck and shoulders!

Nico1012 · February 2009

I can relate to every Taxol induced ache and pain ya'll have described here. After the second Taxol tx, I told my onc I couldn't take anymore of it and he switched to Taxotere. No more aches, pains, or neuropathy. The only difference between the two is Taxol is mixed with cremaphore (a

type of detergent made from castor beans) and Taxotere is mixed with another substance. It is supposedly the cremaphore that causes the horrible side effects. The other difference is that Taxol is much less $$$$ than Taxotere. Those of you who are thinking of switching to Taxotere, I highly recommend it!

Snappygoddess · February 2009

I'm sorry you all have had so many SE with Taxol. I just finished my 2nd round with it and so far no side effects. A few hot flashes(and I have been through menopause for 5 yrs before I was diagnosed with cancer) and some weird food cravings and that is it so far. Amazing how we all react so differently to the same drugs, eh? My onco left it up to me if I wanted Taxol or Taxotere and I opted for Taxol after researching it on the internet and in these forums. Only 10 left to go...hope it goes as easy as the first two did...time will tell!!

Hugs and prayers to those who are really having it rough.

Lainey64 · February 2009

I called my Oncologist's office yesterday and they told me it was ok to take Ibuprofen for the pain. I was concerned because I'm taking blood thinner meds and didn't want anything to interact with that. After I took the Ibuprofen the pain went away. I had just a small amount of it this morning so I took a couple more Motrin and I'm feeling much better. I will take the Ibuprofen early enough next time before the pain takes hold.

Robyn66 · February 2009

I have been told that most people's pain is managed quite well with just Ibuprofen. I just happen to be one of those people who tend to get the wierd side effects, so of course the pain I had would be REALLY BAD!

They changed my steroid and gave me stronger pain meds and I am feeling much better. I still have an ache in my legs but it isn't so bad that it keeps me from functioning.

Another major problem from the first one was the last Neulasta shot hubby gave me. That REALLY jacked up the pain. So I am hopeful this will be better as it goes along. Thank God only two more to go!!!!!

Lainey64 · February 2009

I got my Nuelasta shot on Monday and am praying to the Dear Lord that the pain from that will be minimal. It seems I finally got my taxol pain under control! Last night my legs and knees were just aching like crazy. My DBF was giving me a massage last night... I was like "rub my arms! now my legs! now my neck!". lol

apple · February 2009

Lainey64

you are lucky that works for you... i am soooooooo ticklish i simply cannot be massaged.. maybe my neck... if I've had a beer.

hopefully your Nuelasta will not bother you at all.. i never noticed anything.

Robyn66 · February 2009

I never had pain from the Neulasta when I was on A/C. From what I was told, it was the fact that I didn't need that last shot that caused the pain. My white cells were way too high.

Lainey64 · February 2009

It's day #11 since my last Taxol and I'm still having some aches and pains. The middle toe on my right foot is now numb. I have 2 TXs to go. I hope the SE's don't get too much worse!

OMG Taxol PAIN

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