Chemo options

2»

Comments

  • Sandy3185
    Sandy3185 Member Posts: 228
    ConnieSW said:

    Question

    do you know why they gave you taxotere instead of taxol?

    Taxotere vs Taxol

    In my case I was having periferal neuropathy from the Taxol. It began after my first treatment and got worse with each treatment. By the time I had the third treatment my hands, fingers, feet and toes were numb and I was getting shooting electrical pains in my right leg. My doctor told me that Taxotere was as efficacious as Taxol and doesn't cause neuropathy. So I switched to Taxotere for the last three treatments. The neuropathy did stabilize and, after a while, began to diminish. Today I only have a little bit of numbness in my feet and toes but my hair is very thin on the top of my head! 

    Dont get me wrong, I am grateful that I am still NED but I would like to have known that this could happen. If taxotere was the best option fine, lets go for it. But let me know what's available and what are the pros and cons. Enough! I'm alive and healthy and that is wonderful! Done whining, Sandy

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    ConnieSW said:

    Question

    do you know why they gave you taxotere instead of taxol?

    I have no idea why my

    I have no idea why my oncologist gave me Taxotere but after three chemos, my toes and fingers are numb along with my face (cheeks) and at night my feet feel like they're on fire with needles poking into the arch of my left foot so......I can't imagine what Taxol would have done to me - LOL!!  It's almost eight weeks since my last chemo and I am starting to get some feeling back especially in my left hand and right foot although no hair is growing anywhere and last week part of my left eyebrow fell off - it gives me a very "distinctive" look.  I'm thinking of taking a light brown sharpee and drawing it on.

    Love,

    Eldri

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    ConnieSW said:

    Question

    do you know why they gave you taxotere instead of taxol?

    I also found a woman on

    I also found a woman on Facebook who completed six rounds of chemo with Taxotere and her fingernails are falling off too - just like mine.  I don't remember being told that was a possible side effect either.

    Love,

    Eldri

  • I also found a woman on

    I also found a woman on Facebook who completed six rounds of chemo with Taxotere and her fingernails are falling off too - just like mine.  I don't remember being told that was a possible side effect either.

    Love,

    Eldri

    Eldri-my Dr talked with me about all possible side effects

    Well, actually not my doctor, but my chemo nurse.  When I sat down with her before scheduling, she gave me a expandable file folder from American Cancer Society full of information and a calendar.  She also gave me fact sheets of every drug I would be getting, from the nausea medicine through the chemos.  She read each one with me and we discussed anything that I didn't understand.  Since I was given taxol & carboplain they both had numerous side affects, but taxol listed loosening of the fingernails.  She also said which of the side affects were the most common, but when I mentioned the fingernails, she said that was not common with taxol.  I'm sorry your doctors team didn't go over the stuff you were taking, or that they could lower your dose if you had extreme reactions.  I'm still on the fence aout taking a lower dose  next time, this is day 11 for me and the fingertip neuropathy and also the feet are pretty bad.  I guess if I had to choose, I'll live with the fingertips, but I'm concerned about the feet.  I live alone, so I'm it!  If I lose my mobility????

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    unknown said:

    Eldri-my Dr talked with me about all possible side effects

    Well, actually not my doctor, but my chemo nurse.  When I sat down with her before scheduling, she gave me a expandable file folder from American Cancer Society full of information and a calendar.  She also gave me fact sheets of every drug I would be getting, from the nausea medicine through the chemos.  She read each one with me and we discussed anything that I didn't understand.  Since I was given taxol & carboplain they both had numerous side affects, but taxol listed loosening of the fingernails.  She also said which of the side affects were the most common, but when I mentioned the fingernails, she said that was not common with taxol.  I'm sorry your doctors team didn't go over the stuff you were taking, or that they could lower your dose if you had extreme reactions.  I'm still on the fence aout taking a lower dose  next time, this is day 11 for me and the fingertip neuropathy and also the feet are pretty bad.  I guess if I had to choose, I'll live with the fingertips, but I'm concerned about the feet.  I live alone, so I'm it!  If I lose my mobility????

    I probably spent 10 minutes

    I probably spent 10 minutes with my chemo nurse which included a tour of the chemo area before my chemo started.  I had no idea which chemo drugs I was even going to receive (if I knew then what I know now).  My advocate kept telling me to mention to my doctor the side effects I was having and write them down.  I did that and he wouldn't even look at the list.  After my bad reaction, no alternative chemo options were given to me at all.  Even going in twice with my infected port, he just couldn't be bothered.  His PA tried to get him to come and look at my infected port when I was in the second time.  He just grunted and said it will get better.  When I went in for that third chemo and my blood press was 220/160, I still had the chemo.  My chemo nurse had two failed IVs and they finally went into the crook of my right arm - my only good vein which had been used over and over to draw blood - so I had to keep my right arm perfectly straight for four hours.  My GP said that was totally unacceptable - between the high blood pressure, infected port site and using an overused vein for the infusion - anyone of those things SHOULD have stopped the chemo right there.

    I would change gyno/oncologists but I'm in an HMO and he is IT.  I've been told he is an excellent surgeon but has a horrible bedside manner and I think that's very true.

    I bought the book "Radical Remission" and reading about the cancer patients she interviewed and how they were treated by convention medicine made me realize I am not the only one this has happened to.  I am lucky to have the GP I have.  If my cancer returns, I would agree to surgery but no more chemo or radiation.  I would rather have quality over quantity.  

    Love,

    Eldri

  • BC Brady
    BC Brady Member Posts: 70
    chemo options

    So much good information on this string - much appreciated. I had good results after 6 cycles of carbo/taxol (stage 4 post debulking and total hyst) - Scan in August showed "no hypermetabolic activity". But a sneaky node remained on my cardiophrenic fat pad - does anyone else have this? Even tho it wasn't lighting up in the scan and was reduced in size, I didn't trust the result. Sure enough, in October, that node had multiplied and other areas, too, in the peritoneum. All nodal. So - I swtiched to a research hospital - Roswell in Buffalo - and they put me on Doxil. Scan last Monday showed mixed results - some progression. I haven't the courgage to check the report myself yet to see how much progression. My new dr called me at work ( I'm still working full time) and said she was changing the chemo to carboplatin and Gemza. I never knew what was the 'sickiest' before, the carbo or the taxol - but I think by the way I feel today at this point, I may tolerate the carbo better than the taxol. Have dizziness and fatigue but nausea is not too bad. I'm sure I'm experiencing the tail end of the doxil as well - skin issues! Good Lord! Thought I had shingles! Thankfully, no. As for the Gemza - it's a different class of drugs altogether and I'm still getting my head around what it's supposed to do. I did ask about the metformin - and no real discussion ensued. They have their cookbook and and that's what they want to do first I guess. My original tumor was genetically tested and found 3 markers - all of which have no therapies - and just indicate the rare-ness of my disease - a fact I could have lived without. I'm 57 and active and healthy otherwise - waiting for my first grandbaby to be born any day. I will fight this to the last fiber of my being and know you all will too!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    BC Brady said:

    chemo options

    So much good information on this string - much appreciated. I had good results after 6 cycles of carbo/taxol (stage 4 post debulking and total hyst) - Scan in August showed "no hypermetabolic activity". But a sneaky node remained on my cardiophrenic fat pad - does anyone else have this? Even tho it wasn't lighting up in the scan and was reduced in size, I didn't trust the result. Sure enough, in October, that node had multiplied and other areas, too, in the peritoneum. All nodal. So - I swtiched to a research hospital - Roswell in Buffalo - and they put me on Doxil. Scan last Monday showed mixed results - some progression. I haven't the courgage to check the report myself yet to see how much progression. My new dr called me at work ( I'm still working full time) and said she was changing the chemo to carboplatin and Gemza. I never knew what was the 'sickiest' before, the carbo or the taxol - but I think by the way I feel today at this point, I may tolerate the carbo better than the taxol. Have dizziness and fatigue but nausea is not too bad. I'm sure I'm experiencing the tail end of the doxil as well - skin issues! Good Lord! Thought I had shingles! Thankfully, no. As for the Gemza - it's a different class of drugs altogether and I'm still getting my head around what it's supposed to do. I did ask about the metformin - and no real discussion ensued. They have their cookbook and and that's what they want to do first I guess. My original tumor was genetically tested and found 3 markers - all of which have no therapies - and just indicate the rare-ness of my disease - a fact I could have lived without. I'm 57 and active and healthy otherwise - waiting for my first grandbaby to be born any day. I will fight this to the last fiber of my being and know you all will too!

    BC Brady

    Congrats on the new grandbaby!

    I hope and pray this new treatment will bring you the NED that we all so strive to achieve.

    Glad to see you keeping up the fight.

    Stay strong.

    Love and Hugs,

    Cindi

  • Maggie_mac
    Maggie_mac Member Posts: 32
    BC Brady said:

    chemo options

    So much good information on this string - much appreciated. I had good results after 6 cycles of carbo/taxol (stage 4 post debulking and total hyst) - Scan in August showed "no hypermetabolic activity". But a sneaky node remained on my cardiophrenic fat pad - does anyone else have this? Even tho it wasn't lighting up in the scan and was reduced in size, I didn't trust the result. Sure enough, in October, that node had multiplied and other areas, too, in the peritoneum. All nodal. So - I swtiched to a research hospital - Roswell in Buffalo - and they put me on Doxil. Scan last Monday showed mixed results - some progression. I haven't the courgage to check the report myself yet to see how much progression. My new dr called me at work ( I'm still working full time) and said she was changing the chemo to carboplatin and Gemza. I never knew what was the 'sickiest' before, the carbo or the taxol - but I think by the way I feel today at this point, I may tolerate the carbo better than the taxol. Have dizziness and fatigue but nausea is not too bad. I'm sure I'm experiencing the tail end of the doxil as well - skin issues! Good Lord! Thought I had shingles! Thankfully, no. As for the Gemza - it's a different class of drugs altogether and I'm still getting my head around what it's supposed to do. I did ask about the metformin - and no real discussion ensued. They have their cookbook and and that's what they want to do first I guess. My original tumor was genetically tested and found 3 markers - all of which have no therapies - and just indicate the rare-ness of my disease - a fact I could have lived without. I'm 57 and active and healthy otherwise - waiting for my first grandbaby to be born any day. I will fight this to the last fiber of my being and know you all will too!

    And then there was Gemzar

    I went back for my second taxotere on Tuesday, but my oncologist was not happy with the hand and foot syndrome I was experiencing [welts on my palms and heels] or the bloody nose problem so he said he didn't want to wait and we would make the switch to Gemzar as soon as my labs came back.  I asked him if I was his wife or sister what would he advise.  He said the Gemzar.  My labs came back, and he came back to tell me he couldn't give me anything because my WBC, RBC, hemoglobin, platelets, etc. were too low.  We'll try again next Tuesday.  I was feeling pretty low.

    Now for the good part.  That afternoon the phone rang, and the caller ID said it was my youngest step-daughter.  When there was no response to my "hello" it dawned on me that it was my 2-year old grandson Giovanni.  In his little 2-year old voice, I heard, "I love you".  Those three little words disolved all my anxieties.  Of course he got some prompting, and I well be forever grateful to his mother.

    Please let us know about your new grandbaby and wish me luck on Tuesday.

       

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member

    And then there was Gemzar

    I went back for my second taxotere on Tuesday, but my oncologist was not happy with the hand and foot syndrome I was experiencing [welts on my palms and heels] or the bloody nose problem so he said he didn't want to wait and we would make the switch to Gemzar as soon as my labs came back.  I asked him if I was his wife or sister what would he advise.  He said the Gemzar.  My labs came back, and he came back to tell me he couldn't give me anything because my WBC, RBC, hemoglobin, platelets, etc. were too low.  We'll try again next Tuesday.  I was feeling pretty low.

    Now for the good part.  That afternoon the phone rang, and the caller ID said it was my youngest step-daughter.  When there was no response to my "hello" it dawned on me that it was my 2-year old grandson Giovanni.  In his little 2-year old voice, I heard, "I love you".  Those three little words disolved all my anxieties.  Of course he got some prompting, and I well be forever grateful to his mother.

    Please let us know about your new grandbaby and wish me luck on Tuesday.

       

    Maggie, I had blotches and

    Maggie, I had blotches and then the skin peeled on my hands, feet and finally my face when I was on Taxotere AND I also had constant bloody noses but my doctor just kept giving me chemo.  Also, right before my 3rd chemo my blood pressure was in "stroke zone" and my port was infected....still got the chemo.  Honestly, I probably could have had a fatal heart attack and died in the chair and they would STILL have pumped this chemo into me!!  I am so glad you have a doctor who is watching out for you!!

    That is so cute about your little grandson.  And, good luck on Tuesday!!

    Love,

    Eldri

  • molimoli
    molimoli Member Posts: 514

    I probably spent 10 minutes

    I probably spent 10 minutes with my chemo nurse which included a tour of the chemo area before my chemo started.  I had no idea which chemo drugs I was even going to receive (if I knew then what I know now).  My advocate kept telling me to mention to my doctor the side effects I was having and write them down.  I did that and he wouldn't even look at the list.  After my bad reaction, no alternative chemo options were given to me at all.  Even going in twice with my infected port, he just couldn't be bothered.  His PA tried to get him to come and look at my infected port when I was in the second time.  He just grunted and said it will get better.  When I went in for that third chemo and my blood press was 220/160, I still had the chemo.  My chemo nurse had two failed IVs and they finally went into the crook of my right arm - my only good vein which had been used over and over to draw blood - so I had to keep my right arm perfectly straight for four hours.  My GP said that was totally unacceptable - between the high blood pressure, infected port site and using an overused vein for the infusion - anyone of those things SHOULD have stopped the chemo right there.

    I would change gyno/oncologists but I'm in an HMO and he is IT.  I've been told he is an excellent surgeon but has a horrible bedside manner and I think that's very true.

    I bought the book "Radical Remission" and reading about the cancer patients she interviewed and how they were treated by convention medicine made me realize I am not the only one this has happened to.  I am lucky to have the GP I have.  If my cancer returns, I would agree to surgery but no more chemo or radiation.  I would rather have quality over quantity.  

    Love,

    Eldri

    Your Doctor is health care nightmere.

    Me too Eldri, me too,quality all the way. If the knife can't do it then I'll house it till such time.as alternative kicks in.

    I  hope you are feeling much better now with that port.

    Nuff love Moli.