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taxol, pain and numbness

teresak
Posts: 1
Joined: Feb 2001

I am new to the discussion group. I recently started chemotherapy with taxol and herceptin and have just completed the second round with taxol. I have noticed that in addition to numbness of the fingers and toes that my lips and the tip of my tongue are also numb. Has anyone else noticed this? Am I going crazy? Also, how does one manage the pain associated with taxol? The doctor has prescribed Vioxx but I was allergic to that and had to stop taking it, and now ibuprofen 3 x 800 mg each day. Neither of these dealt adequately with the pain. Does anyone else have any solutions?

Teresa

tiger
Posts: 292
Joined: Oct 2000

Hi Teresa, I have come to think that there really is no way of managing the pain of Taxol. I had six doses, a two month break and now three more doses. I am going for my second tomorrow. The pain can get awful, my first time, the pain was horrific. I tried percocet that my onco prescribed, but I had some really wacked out reactions, hallucinations etc. so now I take Ibuprofen, but it really does not do much. I talked my Dr into some Demerol for those really bad days, but I have not had to take any.(knock on wood) A warm bath,and alternating laying down and walking helps.
Good luck and Fight The Good Fight!!
Tiger

luella
Posts: 26
Joined: Mar 2001

Teresa,

I will be having my second round of taxol and herceptin tomorrow. I had the numbness in my toes and fingers, but not in my lips and tongue. Maybe that comes with the second treatment. I guess I will find out. I do experience alot of pain though. I am going to ask my doctor tomorrow what he can give me for the pain and I will let you know what he recommends and if it works. Also, please let me know if you find anything that alleviates the pain. Good luck to you and hang in there.

laverne
Posts: 75
Joined: Apr 2001

I do not have any solutions for you but I have just had my second dose of taxol and I am having severe body aches to which even percocet (5mg) is not helping. My kids have been giving me great messages but sometimes that does not even help. I feel your pain and can only say hang in there.

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

Dear Teresa,
I was given Taxol in Oct. 98. I was told to take Tylenol for the pain which did absolutely nothing. Fortunately I had some Vicoden left over from my summer surgery. My doctor allowed me to take it. My hands and feet stayed swollen for 10 days and I could hardly walk. I got a second opinion on what would happen if I stopped the Taxol. I had already gotten 4 A/C. Everyone agreed that I did not have to continue, that the A/C did most of the "work". I still experience tingling in my hands and feet, especially at night. Since it remained after 18 months from the original infusion, doctors tell me it won't get any better. Fortunately only about 5% of the Taxol patients get this severe side effect. You have to decide for yourself on weighing the benefit. I proceeded with radiation and am now on Tamoxifen.
Margaret

apryl
Posts: 15
Joined: Apr 2001

teresa, i finished my taxol in december. i had an awful side effect and was taken off - i had a mini stroke. ( i guess that's not too encouraging) anyway, another episode happened one day i went to stand up at work and my legs buckled underneath me and i fell. uch! bald, nauseated, & clumsy. i was so mad. things did get better,though and within one month of finishing taxol, i became symptom free. this may sound weird but i alternated hot and cold packs on my legs and that helped the leg pain some. i was also perscribed tylox, but could only take it if i were going to be home. it helped me sleep at night though. just take it one treatment at a time. you can do this! i promise it will be worth it to know that you've done all you can humanly do and let God handle the rest. love, april

jonjon
Posts: 2
Joined: Mar 2001

Hi Teresak
I am new also to the group, having signed up late last week. I too had Taxol, mine was combined with CarboPlatain. Let me regress(also see my personal page for my cancer history-thi is #3)In June 200 I began 6 treatments one every three weeks of Taxotere.
got thru this fairly well in between treatments. Then just as I was going to Las Vegas for my Victory celebration I became worse in my breathing and strength.The pain was worse in my ribs and chest than before the Taxotere. so it was decided that I would have to have more Chemo and they decided on the 2 above combined. Well as it happened , the Taxotere had damaged my heart. there was a slight reduction in it's ability to squeeze the blood. My heart Dr. decided taht I should be admitted to hospital. He wasn't sure what the Taxol and Carbo combined would do to my heart. I was NEVER so glad to be in a hospital in my life, I was in sooo much pain. so on 1/29 I was admitted and the next day got the Chemo. It took 9 hours. Didn't have many side effects while I was in the hospital because I was on morphine every 2 hours so the pain wouldn't get ahold of me. But the minute I went home OH MY GOD, THE PAIN.This was the WORST pain I have EVER experienced including when I had the upper left lobe of my Lung removed.I have had at least 19 surgeries and had Spinal Meningitisis 4 times, so you know I have had some kind of pain during my lefetime. But this was the worst. It lasted intensely for 10 days and on day 11 I woke up and realized the pain had eased up. I stood in the shower for the first time in a long time and cried for over 20 minutes and thanking Jesus the pain had let up.The Taxol combo had eased up themasssive pain in my ribs side and back so 10 days later I had to take another treatment, this time at the Drs clinic. This time I got slightly alleric to the Taxol as it started making my spine hurt. I advised the nurse that the material said this was an allergic reaction , plus Taxol was making my stomach hurt sooo bad. she did stop the Chemo for about 10 minutes because I was about to pass out from the stomach pain. Unfortunately my stomach was empty, but they had given me 2 150mg AXID BEFORE the treatment. I then had 8 days of a different kind of pain from this 2nd treatment. The vomitting was horrible which in turn when I threw up or even thought about it, well it hurt my tumor area like there was a big ball of hot something right under my ribs and in my breast.
Teresak I can't imagine how you are handling your pain with just the ibuprofen you mentioned.You are entitled to be fairly free of any pain. Will they not give you morphine? I have and take the following: Morphine patch called Duregisic, I am currently on 75mg but tomorrow I will pick up the 100mg patches because the 75mg is not holding it.
I also take for "breakthrough pain", the following medicines: 1)Talwin, a synthetic narcotic I can take as many as 3 at a time, which I am doing, plus 2)Soma which is a muscle relaxer ( I had been taking these 2 for several years) 3) Morphine Sulfate 30 mg 1-2 every 4 hrs. as needed. This is called my short term morphine plus I add OTC Advil because it helps and goes straight to the source of the pain. So every three or four hours I am taking 3 Talwin, 1Soma, 1Advil. When it is extremely bad in between I take 1 or 2 morphine pills. Of course after about 45 minutes I get sleepy and fall forward into a deep sleep but I need the rest anyway since I cannot sleep but 1 1/2 hrs at a time, so these naps help(except when I fall face down in my plate of food.
See every time I breathe I have pain and coughing is out of the question, it really rips me up.Sorry Ihave written so much but what city do you live in that the Drs. won't control a cancer patients pain I believe there was a law passed that cancer patients must be kept as free of pain as they can. I live in Indianapolis and when I went into the hospital all the nurses and Drs were very interested in controlling my pain.Offering me all kinds of pain killers Please check out these and /or other pain killers you are entiltiled to s certain level of comfort of pain. Please let me know what you think and if this helped.
Hand in there!! Oh by the way I refused the 3rd treatment of Taxol because it had ravished my body so. I was so weak , bald head, calves swollen and had went from a size 12 to a size 4 or 6 that quick. I told the Dr. I needed to get some strength back first and give my body a chance to recoup and that's where I am now. recouping.The 3rd treatment was due 3/12 and I was on the way to feeling better when he wanted me to take the anticancer drug Megace, which made it difficult to breathe and sent my heart racing.I stopped it on 3/27.
Please let me know.

dprice
Posts: 1
Joined: Apr 2001

I received taxol in 12 weekly doses instead of four doses three weeks apart. I got 1/3 the normal dosage each time. This protocol caused me no pain at all. About the 11th or 12th treatment I began to notice some minor pain in my hands and feet, and now, 7 months later, I still have some minor neuropathy of the hands and feet, but it seems to lessen as time goes by. I really think the weekly treatments were the way to go, discomfort-wise......Deb

lynnie444
Posts: 3
Joined: Apr 2001

Dear teresak,
I was treated with 3 24hr. infusions of taxol in Oct/Nov 98. All of my chemo was extremely high dose. The taxol was the hardest for me to deal with....in fact, I'm still dealing with numbness and aching joints and muscles. My onc put me on OxyIR and OxyContin.....they worked wonders. I tried a lot of other meds first, but none of them worked like these. Talk to your onc about trying them. Good Luck.

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