Re: [Breast Cancer]Taxol

June 6, 2006

Hi Barb, Taxol still is for me, it isn't over yet. Or at least I am still supposed to have another treatment. The problem is that taxol has been causing very unsettling side effects. A/C made me very sick and I would have nausea and throw-up for about 9-10 days after the session, be fatigued, but then it would go away. It is not so with taxol. Let me be more clear... My sessions are every two weeks. The first session I had a strong alergic reaction and they had to stop the dripping because I couldn't breathe. But this only happens in 2.1% of the cases. Then they gave even more strong anti-histaminics and I was fine afterwards. I had it on Monday and Tuesday I was fine. Wednesday I became very light sensitive, even TV hurt my eyes. By the end of the day, my neck was hurting (muscle pain) and the arm which had surgery. And mild headache. Thursday I could barely walk and could not be touched. Even a light

touch in my arm hurt a lot. So, I took muscle relaxant, but it didn't help much. I learned for the second session to take it easy and not go to work. By Saturday everything was ok again. I also had very acid diarrhea. The second session went fine (two weeks later), no more reactions and I had the same side effects plus a few more. I begin to have tingling or maybe better, prickling folowed by intense itching in various parts of my body (at the time more feet, hands and lower back) and also my muscle pain lasted more time and I began to have joint pain by Saturday. I felt like I was 80 years old. Then I did some research and panicked. There is some evidence that those side effects can be permanent. I went to a neurosurgeon (wonderful man) who prescribed a couple of medications (mainly B vitamins in heavy dosage). I began to take it and later the week the pain subsided. I went for the 3rd session and my onc also prescribed L-Glutamin. I have

been taking it since then. The muscle pain and the joint pain were not so severe, I must say. It was much better. Now, the tigling/burning/itching came back 8-9 days after the session, so by Wednesday night last week. (This last session is going to be 3 weeks after the 3rd.) The itching/burning... has been more intense to the point that I cannot function. I have to stay motionless for it to subside. Friday I went home earlier and the only thing I thought is that I wanted to die. Really. It is not worth it to live like this. I can take the nausea, the muscle pain, the joint pain, the sweats, sleeping badly and other things, but this has topped all. And I also have lost some sensation in my big toe, but this I can handle. My fear is that effects cannot be reversed if I get more applications. I know it happens because the Taxol (or the solvent in which it is dissolved, castor oil) attacks the peripheral nerve endings, so they keep firing at

random (I did find out that it is not at random; it depends on the use of the body part), or they can die. Once it begins I have to stop all I am doing and pray for release. Pray, since there is nothing else it can be done. It has been now 6 days since it started and it has not gone way. It is better, but still comes and goes. My neurosurgeon also told me that some of the side effects of taxol only appear sometime after the end of the treatment. So, when you think it is over, it comes back? I do not think I am ready for that. I catch myself many times desiring I never had begun this treatment... Anyway, I will see about the last treatment. If this itching/etc... has not gone way completely until monday, I will have a chat with the onc and ask for something else. I would even do A/C again. I know taxol is a potent treatment, but what's the point of getting rid of cancer and going nuts with this side effects? I know it seems

exaggerated, but that's exactly how I feel, and I am not a fragile creature, believe me. My advice to those that are facing taxol treatment. Talk A LOT with your doctor about all the possible permanent demage. Talk about alternatives. If taxol is the only route, take the supportive medication (the vitamins and glutamin), all the time. Be VERY careful of your extremities, with heat and cold and cuts, abbrasions etc. Do not expose them to heat when cooking/baking, to frozen stuff, etc etc. For me, had I know this before, I don't think I would have agreed with taxol, but this is a personal opinion, based on what I think is important to my well being. I hope this long email helps and I am available for questions... Hugs Barb Roy wrote: , How was the Taxol for you? Barb __________________________________________________

June 6, 2006

Thanks, . You do not paint a bright picture, but I'd rather be prepared for the worst than think this is going to be a breeze (like my onc seems to think). I'm still not sure if Taxol will be the choice as he mentioned something else. I hope your next treatment goes much better... the bright side, it will be the last. Between the A/C and Taxol, just sounds like you've traded once set of reactions for another. None of this is fun. Just think, you are almost done. <s>

Barb

Re: Taxol

Hi Barb,

Taxol still is for me, it isn't over yet. Or at least I am still supposed to have another treatment. The problem is that taxol has been causing very unsettling side effects.

A/C made me very sick and I would have nausea and throw-up for about 9-10 days after the session, be fatigued, but then it would go away. It is not so with taxol. Let me be more clear...

My sessions are every two weeks. The first session I had a strong alergic reaction and they had to stop the dripping because I couldn't breathe. But this only happens in 2.1% of the cases. Then they gave even more strong anti-histaminics and I was fine afterwards. I had it on Monday and Tuesday I was fine. Wednesday I became very light sensitive, even TV hurt my eyes. By the end of the day, my neck was hurting (muscle pain) and the arm which had surgery. And mild headache. Thursday I could barely walk and could not be touched. ! Even a light touch in my arm hurt a lot. So, I took muscle relaxant, but it didn't help much. I learned for the second session to take it easy and not go to work. By Saturday everything was ok again. I also had very acid diarrhea.

The second session went fine (two weeks later), no more reactions and I had the same side effects plus a few more. I begin to have tingling or maybe better, prickling folowed by intense itching in various parts of my body (at the time more feet, hands and lower back) and also my muscle pain lasted more time and I began to have joint pain by Saturday. I felt like I was 80 years old. Then I did some research and panicked. There is some evidence that those side effects can be permanent. I went to a neurosurgeon (wonderful man) who prescribed a couple of medications (mainly B vitamins in heavy dosage). I began to take it and later the week the pain subsided.

I went for the 3rd session and my onc also prescribed L-Glutamin. I have been taking it since then. The muscle pain and the joint pain were not so severe, I must say. It was much better. Now, the tigling/burning/itching came back 8-9 days after the session, so by Wednesday night last week. (This last session is going to be 3 weeks after the 3rd.) The itching/burning... has been more intense to the point that I cannot function. I have to stay motionless for it to subside. Friday I went home earlier and the only thing I thought is that I wanted to die. Really. It is not worth it to live like this. I can take the nausea, the muscle pain, the joint pain, the sweats, sleeping badly and other things, but this has topped all. And I also have lost some sensation in my big toe, but this I can handle.

My fear is that effects cannot be reversed if I get more applications. I know it happens because the Taxol (or the solvent in which it is dissolved, castor oil) attacks the peripheral nerve endings, so they keep firing at random (I did find out that it is not at random; it depends on the use of the body part), or they can die. Once it begins I have to stop all I am doing and pray for release. Pray, since there is nothing else it can be done. It has been now 6 days since it started and it has not gone way. It is better, but still comes and goes.

My neurosurgeon also told me that some of the side effects of taxol only appear sometime after the end of the treatment. So, when you think it is over, it comes back? I do not think I am ready for that. I catch myself many times desiring I never had begun this treatment...

Anyway, I will see about the last treatment. If this itching/etc... has not gone way completely until monday, I will have a chat with the onc and ask for something else. I would even do A/C again.

I know taxol is a potent treatment, but what's the point of getting rid of cancer and going nuts with this side effects? I know it seems exaggerated, but that's exactly how I feel, and I am not a fragile creature, believe me.

My advice to those that are facing taxol treatment. Talk A LOT with your doctor about all the possible permanent demage. Talk about alternatives. If taxol is the only route, take the supportive medication (the vitamins and glutamin), all the time. Be VERY careful of your extremities, with heat and cold and cuts, abbrasions etc. Do not expose them to heat when cooking/baking, to frozen stuff, etc etc.

For me, had I know this before, I don't think I would have agreed with taxol, but this is a personal opinion, based on what I think is important to my well being.

I hope this long email helps and I am available for questions...

Hugs

Barb Roy wrote:

,

How was the Ta! xol for you?

Barb

__________________________________________________

June 6, 2006

,

Did your onc have you take big old steroids before treatment? I have to

take 5 tablets of Dexamethasone/Decadron the night before and the

morning of my Taxol treatment.

I start Taxol this Thursday, and you can bet I'm going to ask for the

supportive medications, as you suggest!

Thanks,

--- Pinheiro wrote:

> Hi Barb,

>

> Taxol still is for me, it isn't over yet. Or at least I am still

> supposed to have another treatment. The problem is that taxol has

> been causing very unsettling side effects.

> A/C made me very sick and I would have nausea and throw-up for

> about 9-10 days after the session, be fatigued, but then it would go

> away. It is not so with taxol. Let me be more clear...

> My sessions are every two weeks. The first session I had a strong

> alergic reaction and they had to stop the dripping because I couldn't

> breathe. But this only happens in 2.1% of the cases. Then they gave

> even more strong anti-histaminics and I was fine afterwards. I had it

> on Monday and Tuesday I was fine. Wednesday I became very light

> sensitive, even TV hurt my eyes. By the end of the day, my neck was

> hurting (muscle pain) and the arm which had surgery. And mild

> headache. Thursday I could barely walk and could not be touched. Even

> a light touch in my arm hurt a lot. So, I took muscle relaxant, but

> it didn't help much. I learned for the second session to take it easy

> and not go to work. By Saturday everything was ok again. I also had

> very acid diarrhea.

> The second session went fine (two weeks later), no more reactions

> and I had the same side effects plus a few more. I begin to have

> tingling or maybe better, prickling folowed by intense itching in

> various parts of my body (at the time more feet, hands and lower

> back) and also my muscle pain lasted more time and I began to have

> joint pain by Saturday. I felt like I was 80 years old. Then I did

> some research and panicked. There is some evidence that those side

> effects can be permanent. I went to a neurosurgeon (wonderful man)

> who prescribed a couple of medications (mainly B vitamins in heavy

> dosage). I began to take it and later the week the pain subsided.

> I went for the 3rd session and my onc also prescribed L-Glutamin. I

> have been taking it since then. The muscle pain and the joint pain

> were not so severe, I must say. It was much better. Now, the

> tigling/burning/itching came back 8-9 days after the session, so by

> Wednesday night last week. (This last session is going to be 3 weeks

> after the 3rd.) The itching/burning... has been more intense to the

> point that I cannot function. I have to stay motionless for it to

> subside. Friday I went home earlier and the only thing I thought is

> that I wanted to die. Really. It is not worth it to live like this. I

> can take the nausea, the muscle pain, the joint pain, the sweats,

> sleeping badly and other things, but this has topped all. And I also

> have lost some sensation in my big toe, but this I can handle.

> My fear is that effects cannot be reversed if I get more

> applications. I know it happens because the Taxol (or the solvent in

> which it is dissolved, castor oil) attacks the peripheral nerve

> endings, so they keep firing at random (I did find out that it is not

> at random; it depends on the use of the body part), or they can die.

> Once it begins I have to stop all I am doing and pray for release.

> Pray, since there is nothing else it can be done. It has been now 6

> days since it started and it has not gone way. It is better, but

> still comes and goes.

> My neurosurgeon also told me that some of the side effects of taxol

> only appear sometime after the end of the treatment. So, when you

> think it is over, it comes back? I do not think I am ready for that.

> I catch myself many times desiring I never had begun this

> treatment...

> Anyway, I will see about the last treatment. If this itching/etc...

> has not gone way completely until monday, I will have a chat with the

> onc and ask for something else. I would even do A/C again.

> I know taxol is a potent treatment, but what's the point of getting

> rid of cancer and going nuts with this side effects? I know it seems

> exaggerated, but that's exactly how I feel, and I am not a fragile

> creature, believe me.

> My advice to those that are facing taxol treatment. Talk A LOT with

> your doctor about all the possible permanent demage. Talk about

> alternatives. If taxol is the only route, take the supportive

> medication (the vitamins and glutamin), all the time. Be VERY careful

> of your extremities, with heat and cold and cuts, abbrasions etc. Do

> not expose them to heat when cooking/baking, to frozen stuff, etc

> etc.

> For me, had I know this before, I don't think I would have agreed

> with taxol, but this is a personal opinion, based on what I think is

> important to my well being.

> I hope this long email helps and I am available for questions...

> Hugs

>

> Barb Roy wrote:

> ,

> How was the Taxol for you?

> Barb

>

> __________________________________________________

>

June 6, 2006

See, that's what worries me... the steroids. I have such a problem with headaches any way and the more steroids, the worse they are. Yikes!!!

Barb

Re: Taxol

,Did your onc have you take big old steroids before treatment? I have totake 5 tablets of Dexamethasone/Decadron the night before and themorning of my Taxol treatment.I start Taxol this Thursday, and you can bet I'm going to ask for thesupportive medications, as you suggest!Thanks,--- Pinheiro <denisempinheiro> wrote:> Hi Barb, > > Taxol still is for me, it isn't over yet. Or at least I am still> supposed to have another treatment. The problem is that taxol has> been causing very unsettling side effects.> A/C made me very sick and I would have nausea and throw-up for> about 9-10 days after the session, be fatigued, but then it would go> away. It is not so with taxol. Let me be more clear...> My sessions are every two weeks. The first session I had a strong> alergic reaction and they had to stop the dripping because I couldn't> breathe. But this only happens in 2.1% of the cases. Then they gave> even more strong anti-histaminics and I was fine afterwards. I had it> on Monday and Tuesday I was fine. Wednesday I became very light> sensitive, even TV hurt my eyes. By the end of the day, my neck was> hurting (muscle pain) and the arm which had surgery. And mild> headache. Thursday I could barely walk and could not be touched. Even> a light touch in my arm hurt a lot. So, I took muscle relaxant, but> it didn't help much. I learned for the second session to take it easy> and not go to work. By Saturday everything was ok again. I also had> very acid diarrhea.> The second session went fine (two weeks later), no more reactions> and I had the same side effects plus a few more. I begin to have> tingling or maybe better, prickling folowed by intense itching in> various parts of my body (at the time more feet, hands and lower> back) and also my muscle pain lasted more time and I began to have> joint pain by Saturday. I felt like I was 80 years old. Then I did> some research and panicked. There is some evidence that those side> effects can be permanent. I went to a neurosurgeon (wonderful man)> who prescribed a couple of medications (mainly B vitamins in heavy> dosage). I began to take it and later the week the pain subsided. > I went for the 3rd session and my onc also prescribed L-Glutamin. I> have been taking it since then. The muscle pain and the joint pain> were not so severe, I must say. It was much better. Now, the> tigling/burning/itching came back 8-9 days after the session, so by> Wednesday night last week. (This last session is going to be 3 weeks> after the 3rd.) The itching/burning... has been more intense to the> point that I cannot function. I have to stay motionless for it to> subside. Friday I went home earlier and the only thing I thought is> that I wanted to die. Really. It is not worth it to live like this. I> can take the nausea, the muscle pain, the joint pain, the sweats,> sleeping badly and other things, but this has topped all. And I also> have lost some sensation in my big toe, but this I can handle. > My fear is that effects cannot be reversed if I get more> applications. I know it happens because the Taxol (or the solvent in> which it is dissolved, castor oil) attacks the peripheral nerve> endings, so they keep firing at random (I did find out that it is not> at random; it depends on the use of the body part), or they can die.> Once it begins I have to stop all I am doing and pray for release.> Pray, since there is nothing else it can be done. It has been now 6> days since it started and it has not gone way. It is better, but> still comes and goes. > My neurosurgeon also told me that some of the side effects of taxol> only appear sometime after the end of the treatment. So, when you> think it is over, it comes back? I do not think I am ready for that.> I catch myself many times desiring I never had begun this> treatment...> Anyway, I will see about the last treatment. If this itching/etc...> has not gone way completely until monday, I will have a chat with the> onc and ask for something else. I would even do A/C again. > I know taxol is a potent treatment, but what's the point of getting> rid of cancer and going nuts with this side effects? I know it seems> exaggerated, but that's exactly how I feel, and I am not a fragile> creature, believe me.> My advice to those that are facing taxol treatment. Talk A LOT with> your doctor about all the possible permanent demage. Talk about> alternatives. If taxol is the only route, take the supportive> medication (the vitamins and glutamin), all the time. Be VERY careful> of your extremities, with heat and cold and cuts, abbrasions etc. Do> not expose them to heat when cooking/baking, to frozen stuff, etc> etc.> For me, had I know this before, I don't think I would have agreed> with taxol, but this is a personal opinion, based on what I think is> important to my well being.> I hope this long email helps and I am available for questions...> Hugs> > > Barb Roy <blroy1charter (DOT) net> wrote:> ,> How was the Taxol for you?> Barb> > __________________________________________________>

June 6, 2006

Amen, ! I am looking at quality. My personal opinion is, that

is my most important consideration. So glad I didn't let the onc talk

me into Chemo. When I refused he said it was standard practice for my

size tumor (stage 2) even though the nodes were clear. I refused again

and he did up a computer model with my particular circumstances and it

turned out Chemo would only increase my 10 year, disease free survival

rate by 2%! I think even he was surprised. Sometimes, I think we get

a little too much cookie cutter medicine with this disease!

Ruth

>

> Hi Barb,

>

> Taxol still is for me, it isn't over yet. Or at least I am still

supposed to have another treatment. The problem is that taxol has been

causing very unsettling side effects.

June 6, 2006

Hi , Good luck!! Just think that you may not have much of what I had. Some people do not. And yes, I took the same amount of Decadron, but the last and next time only 5 tablets. And they will give you more steroids, anti-nausea and anti-histaminics IV before the taxol drip. Bear in mind that not all doctors think well of the supportive meds. Some say it is not needed, some say it is placebo, some say it doesn't work. My onc only gave me glutamin when I said I was considering stopping the treatment. I can be a pain as a patient sometimes... Hugs jennifer ruffing wrote: ,Did your onc have you take big old steroids before treatment? I have totake 5 tablets of Dexamethasone/Decadron the night before and themorning of my Taxol treatment.I start Taxol this Thursday, and you can bet I'm going to ask for thesupportive medications, as you suggest!Thanks,--- Pinheiro <denisempinheiro> wrote:> Hi Barb, > > Taxol still is for me, it isn't over yet. Or at least I am still> supposed to have another treatment. The problem is that taxol has> been causing very unsettling side effects.> A/C made me very sick and I would have nausea and throw-up for> about 9-10 days after the session, be fatigued, but then it would

go> away. It is not so with taxol. Let me be more clear...> My sessions are every two weeks. The first session I had a strong> alergic reaction and they had to stop the dripping because I couldn't> breathe. But this only happens in 2.1% of the cases. Then they gave> even more strong anti-histaminics and I was fine afterwards. I had it> on Monday and Tuesday I was fine. Wednesday I became very light> sensitive, even TV hurt my eyes. By the end of the day, my neck was> hurting (muscle pain) and the arm which had surgery. And mild> headache. Thursday I could barely walk and could not be touched. Even> a light touch in my arm hurt a lot. So, I took muscle relaxant, but> it didn't help much. I learned for the second session to take it easy> and not go to work. By Saturday everything was ok again. I also had> very acid diarrhea.> The second session went fine (two weeks later), no

more reactions> and I had the same side effects plus a few more. I begin to have> tingling or maybe better, prickling folowed by intense itching in> various parts of my body (at the time more feet, hands and lower> back) and also my muscle pain lasted more time and I began to have> joint pain by Saturday. I felt like I was 80 years old. Then I did> some research and panicked. There is some evidence that those side> effects can be permanent. I went to a neurosurgeon (wonderful man)> who prescribed a couple of medications (mainly B vitamins in heavy> dosage). I began to take it and later the week the pain subsided. > I went for the 3rd session and my onc also prescribed L-Glutamin. I> have been taking it since then. The muscle pain and the joint pain> were not so severe, I must say. It was much better. Now, the> tigling/burning/itching came back 8-9 days after the session, so

by> Wednesday night last week. (This last session is going to be 3 weeks> after the 3rd.) The itching/burning... has been more intense to the> point that I cannot function. I have to stay motionless for it to> subside. Friday I went home earlier and the only thing I thought is> that I wanted to die. Really. It is not worth it to live like this. I> can take the nausea, the muscle pain, the joint pain, the sweats,> sleeping badly and other things, but this has topped all. And I also> have lost some sensation in my big toe, but this I can handle. > My fear is that effects cannot be reversed if I get more> applications. I know it happens because the Taxol (or the solvent in> which it is dissolved, castor oil) attacks the peripheral nerve> endings, so they keep firing at random (I did find out that it is not> at random; it depends on the use of the body part), or they can

die.> Once it begins I have to stop all I am doing and pray for release.> Pray, since there is nothing else it can be done. It has been now 6> days since it started and it has not gone way. It is better, but> still comes and goes. > My neurosurgeon also told me that some of the side effects of taxol> only appear sometime after the end of the treatment. So, when you> think it is over, it comes back? I do not think I am ready for that.> I catch myself many times desiring I never had begun this> treatment...> Anyway, I will see about the last treatment. If this itching/etc...> has not gone way completely until monday, I will have a chat with the> onc and ask for something else. I would even do A/C again. > I know taxol is a potent treatment, but what's the point of getting> rid of cancer and going nuts with this side effects? I know it seems> exaggerated, but that's

exactly how I feel, and I am not a fragile> creature, believe me.> My advice to those that are facing taxol treatment. Talk A LOT with> your doctor about all the possible permanent demage. Talk about> alternatives. If taxol is the only route, take the supportive> medication (the vitamins and glutamin), all the time. Be VERY careful> of your extremities, with heat and cold and cuts, abbrasions etc. Do> not expose them to heat when cooking/baking, to frozen stuff, etc> etc.> For me, had I know this before, I don't think I would have agreed> with taxol, but this is a personal opinion, based on what I think is> important to my well being.> I hope this long email helps and I am available for questions...> Hugs> > > Barb Roy <blroy1charter (DOT) net> wrote:> ,> How was the Taxol for you?>

Barb> > __________________________________________________>

June 6, 2006

Well, that's a tough one. But they do give you headache medication before the drips. It might help. But just think that the headaches are not permanent and eventually they go way. Right? I do not have headaches normally so I cannot say much about it. I guess try to prevent them, because as far as I know you cannot do taxol without the steroids. What made me feel agreable to taxol was the fact that it doesn't hurt the ovaries and I still had the notion I would someday be able to get pregnant. This idea is quickly going away (to my desperation...), that's one of the reasons I am so upset with taxol now. hugs b Roy wrote: See, that's what worries me... the steroids. I have such a problem with headaches any way and the more steroids, the worse they are. Yikes!!! Barb Re: Taxol ,Did your onc have you take big old steroids before treatment? I have totake 5 tablets of Dexamethasone/Decadron the night before and themorning of my Taxol treatment.I start Taxol this Thursday, and you can bet I'm going to ask for thesupportive medications, as you suggest!Thanks,--- Pinheiro <denisempinheiro> wrote:> Hi Barb, > > Taxol still is for me, it isn't over yet. Or at least I am still> supposed to have another treatment. The problem is that taxol has> been causing very unsettling side effects.> A/C made me very sick and I would have nausea and throw-up for> about 9-10 days after the session, be fatigued, but then it would go> away. It is not so with taxol. Let me be more clear...> My sessions are every two weeks. The first session I had

a strong> alergic reaction and they had to stop the dripping because I couldn't> breathe. But this only happens in 2.1% of the cases. Then they gave> even more strong anti-histaminics and I was fine afterwards. I had it> on Monday and Tuesday I was fine. Wednesday I became very light> sensitive, even TV hurt my eyes. By the end of the day, my neck was> hurting (muscle pain) and the arm which had surgery. And mild> headache. Thursday I could barely walk and could not be touched. Even> a light touch in my arm hurt a lot. So, I took muscle relaxant, but> it didn't help much. I learned for the second session to take it easy> and not go to work. By Saturday everything was ok again. I also had> very acid diarrhea.> The second session went fine (two weeks later), no more reactions> and I had the same side effects plus a few more. I begin to have> tingling or maybe better, prickling

folowed by intense itching in> various parts of my body (at the time more feet, hands and lower> back) and also my muscle pain lasted more time and I began to have> joint pain by Saturday. I felt like I was 80 years old. Then I did> some research and panicked. There is some evidence that those side> effects can be permanent. I went to a neurosurgeon (wonderful man)> who prescribed a couple of medications (mainly B vitamins in heavy> dosage). I began to take it and later the week the pain subsided. > I went for the 3rd session and my onc also prescribed L-Glutamin. I> have been taking it since then. The muscle pain and the joint pain> were not so severe, I must say. It was much better. Now, the> tigling/burning/itching came back 8-9 days after the session, so by> Wednesday night last week. (This last session is going to be 3 weeks> after the 3rd.) The itching/burning... has

been more intense to the> point that I cannot function. I have to stay motionless for it to> subside. Friday I went home earlier and the only thing I thought is> that I wanted to die. Really. It is not worth it to live like this. I> can take the nausea, the muscle pain, the joint pain, the sweats,> sleeping badly and other things, but this has topped all. And I also> have lost some sensation in my big toe, but this I can handle. > My fear is that effects cannot be reversed if I get more> applications. I know it happens because the Taxol (or the solvent in> which it is dissolved, castor oil) attacks the peripheral nerve> endings, so they keep firing at random (I did find out that it is not> at random; it depends on the use of the body part), or they can die.> Once it begins I have to stop all I am doing and pray for release.> Pray, since there is nothing else it can be done. It has

been now 6> days since it started and it has not gone way. It is better, but> still comes and goes. > My neurosurgeon also told me that some of the side effects of taxol> only appear sometime after the end of the treatment. So, when you> think it is over, it comes back? I do not think I am ready for that.> I catch myself many times desiring I never had begun this> treatment...> Anyway, I will see about the last treatment. If this itching/etc...> has not gone way completely until monday, I will have a chat with the> onc and ask for something else. I would even do A/C again. > I know taxol is a potent treatment, but what's the point of getting> rid of cancer and going nuts with this side effects? I know it seems> exaggerated, but that's exactly how I feel, and I am not a fragile> creature, believe me.> My advice to those that are facing taxol treatment. Talk A LOT

with> your doctor about all the possible permanent demage. Talk about> alternatives. If taxol is the only route, take the supportive> medication (the vitamins and glutamin), all the time. Be VERY careful> of your extremities, with heat and cold and cuts, abbrasions etc. Do> not expose them to heat when cooking/baking, to frozen stuff, etc> etc.> For me, had I know this before, I don't think I would have agreed> with taxol, but this is a personal opinion, based on what I think is> important to my well being.> I hope this long email helps and I am available for questions...> Hugs> > > Barb Roy <blroy1charter (DOT) net> wrote:> ,> How was the Taxol for you?> Barb> > __________________________________________________>

June 6, 2006

Ruth, could you give more information about this computer model? I am actually in IT and never heard of this. But then, I am no doctor. It seems a wonderful tool to try to balance treatments and quality of life. I have my mext chemo Monday and I would like to take this piece of info to my onc, if possible. Thanks a lot ruthiema36 wrote: Amen, ! I am looking at quality. My personal opinion is, thatis my most important consideration. So glad I didn't let the onc

talkme into Chemo. When I refused he said it was standard practice for mysize tumor (stage 2) even though the nodes were clear. I refused againand he did up a computer model with my particular circumstances and itturned out Chemo would only increase my 10 year, disease free survivalrate by 2%! I think even he was surprised. Sometimes, I think we geta little too much cookie cutter medicine with this disease!Ruth>> Hi Barb, > > Taxol still is for me, it isn't over yet. Or at least I am stillsupposed to have another treatment. The problem is that taxol has beencausing very unsettling side effects. __________________________________________________

June 6, 2006

Hello Ladies, just wanted to say how sorry I am that you are having so much trouble with the Taxol , the side effects you are having are horrible. Only one of the ladies in my "chemo group" had so much trouble, and they discontinued treatment. For those of you just starting, like said, not everyone has those side effects. The majority of women don't ( a positive to keep in mind!). Of course I can only attest to myself, and those at my clinic. I did have muscle/bone/joint pain that has lingered since October 05 when I finished Taxol, however I am on weekly Herceptin, which can cause pain in rare cases, so ...???. I also agree that sometimes the treatment is worse than the disease in some cases. I think you have to follow your "gut" and decide what is best for YOU. In my case with aggressive "angry" cancer, I chose to fight aggressively with whatever "big guns" they had, and fortunately my body was able to handle it. Just keep in mind everyone is different and we all have unique circumstances, so side effects will vary. I will pray for a speedy recovery from all those side effects . Take Care All, Pinheiro wrote: Hi , Good luck!! Just think that you may not have much of what I had. Some people do not. And yes, I took the same amount of Decadron, but the last and next time only 5

tablets. And they will give you more steroids, anti-nausea and anti-histaminics IV before the taxol drip. Bear in mind that not all doctors think well of the supportive meds. Some say it is not needed, some say it is placebo, some say it doesn't work. My onc only gave me glutamin when I said I was considering stopping the treatment. I can be a pain as a patient sometimes... Hugs jennifer ruffing wrote: ,Did your onc have you take big old steroids before treatment? I have totake 5 tablets of Dexamethasone/Decadron the night before and themorning of my Taxol treatment.I start Taxol this Thursday, and you can bet I'm going to ask for thesupportive medications, as you suggest!Thanks,--- Pinheiro

<denisempinheiro> wrote:> Hi Barb, > > Taxol still is for me, it isn't over yet. Or at least I am still> supposed to have another treatment. The problem is that taxol has> been causing very unsettling side effects.> A/C made me very sick and I would have nausea and throw-up for> about 9-10 days after the session, be fatigued, but then it would go> away. It is not so with taxol. Let me be more clear...> My sessions are every two weeks. The first session I had a strong> alergic reaction and they had to stop the dripping because I couldn't> breathe. But this only happens in 2.1% of the cases. Then they gave> even more strong anti-histaminics and I was fine afterwards. I had it> on Monday and Tuesday I was fine. Wednesday I became very light> sensitive, even TV hurt my eyes. By the end of the day, my neck

was> hurting (muscle pain) and the arm which had surgery. And mild> headache. Thursday I could barely walk and could not be touched. Even> a light touch in my arm hurt a lot. So, I took muscle relaxant, but> it didn't help much. I learned for the second session to take it easy> and not go to work. By Saturday everything was ok again. I also had> very acid diarrhea.> The second session went fine (two weeks later), no more reactions> and I had the same side effects plus a few more. I begin to have> tingling or maybe better, prickling folowed by intense itching in> various parts of my body (at the time more feet, hands and lower> back) and also my muscle pain lasted more time and I began to have> joint pain by Saturday. I felt like I was 80 years old. Then I did> some research and panicked. There is some evidence that those side> effects can be permanent. I went to a neurosurgeon

(wonderful man)> who prescribed a couple of medications (mainly B vitamins in heavy> dosage). I began to take it and later the week the pain subsided. > I went for the 3rd session and my onc also prescribed L-Glutamin. I> have been taking it since then. The muscle pain and the joint pain> were not so severe, I must say. It was much better. Now, the> tigling/burning/itching came back 8-9 days after the session, so by> Wednesday night last week. (This last session is going to be 3 weeks> after the 3rd.) The itching/burning... has been more intense to the> point that I cannot function. I have to stay motionless for it to> subside. Friday I went home earlier and the only thing I thought is> that I wanted to die. Really. It is not worth it to live like this. I> can take the nausea, the muscle pain, the joint pain, the sweats,> sleeping badly and other things, but this has topped

all. And I also> have lost some sensation in my big toe, but this I can handle. > My fear is that effects cannot be reversed if I get more> applications. I know it happens because the Taxol (or the solvent in> which it is dissolved, castor oil) attacks the peripheral nerve> endings, so they keep firing at random (I did find out that it is not> at random; it depends on the use of the body part), or they can die.> Once it begins I have to stop all I am doing and pray for release.> Pray, since there is nothing else it can be done. It has been now 6> days since it started and it has not gone way. It is better, but> still comes and goes. > My neurosurgeon also told me that some of the side effects of taxol> only appear sometime after the end of the treatment. So, when you> think it is over, it comes back? I do not think I am ready for that.> I catch myself many times desiring I

never had begun this> treatment...> Anyway, I will see about the last treatment. If this itching/etc...> has not gone way completely until monday, I will have a chat with the> onc and ask for something else. I would even do A/C again. > I know taxol is a potent treatment, but what's the point of getting> rid of cancer and going nuts with this side effects? I know it seems> exaggerated, but that's exactly how I feel, and I am not a fragile> creature, believe me.> My advice to those that are facing taxol treatment. Talk A LOT with> your doctor about all the possible permanent demage. Talk about> alternatives. If taxol is the only route, take the supportive> medication (the vitamins and glutamin), all the time. Be VERY careful> of your extremities, with heat and cold and cuts, abbrasions etc. Do> not expose them to heat when cooking/baking, to frozen stuff, etc>

etc.> For me, had I know this before, I don't think I would have agreed> with taxol, but this is a personal opinion, based on what I think is> important to my well being.> I hope this long email helps and I am available for questions...> Hugs> > > Barb Roy <blroy1charter (DOT) net> wrote:> ,> How was the Taxol for you?> Barb> > __________________________________________________>

June 6, 2006