New to CSN

Hello I am new to CSN and wanted to introduce myself as this seems like a real supportive place. I was diagnosed IDC grade 2b and had a bi-lat mastectomy with 4 nodes removed from my left breast in Sept, 2010. I started chemo (A/C) DD every 2 weeks for a total of 4 rounds. I had several delays due to high WBC counts and LFT's. Started Taxol 6 wks ago, but also, more delays due to high WBC counts (from the neulasta injections I receive one day after chemo.) I go for 3 of 4 taxol on Tues (hopefully) but wanted to find out if anyone else has intense, unbelieveable bone pain from taxol and neulasta. The pain is so severe that even oxycodone does not completely relieve it. I usually end up in bed for 3 or 4 days after tx. I just want it to be all over with. Not that I'm looking forward to 30 Rad sessions, reconstruction surgery and 5 years of SE's from hormone pills. I would like to hear if any other women have had similar experience. Thank you in advance.

"May you be at peace; May you be free of Suffering."
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Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    Welcome, Hippiechick
    Great screen name, by the way!

    I just wanted to welcome you...my treatment was very different from yours -- I didn't do Taxol, and was fortunate to not have much bone pain from the Neulasta.

    You sound very knowledgeable about and engaged in your treatment, so you've probably already tried this, but I've heard many women here mention Claritin as very helpful for the Neulasta bone pain -- have you tried that?

    I know that other women here who have more similar treatments will be along soon with more advice -- in the meantime, know that you're always welcome here anytime, with any questions, frustrations or anything else you got! We're here!

    Traci
  • pokrydi
    pokrydi Member Posts: 99
    TraciInLA said:

    Welcome, Hippiechick
    Great screen name, by the way!

    I just wanted to welcome you...my treatment was very different from yours -- I didn't do Taxol, and was fortunate to not have much bone pain from the Neulasta.

    You sound very knowledgeable about and engaged in your treatment, so you've probably already tried this, but I've heard many women here mention Claritin as very helpful for the Neulasta bone pain -- have you tried that?

    I know that other women here who have more similar treatments will be along soon with more advice -- in the meantime, know that you're always welcome here anytime, with any questions, frustrations or anything else you got! We're here!

    Traci

    Welcome hippiechick
    I just joined the board this month sorry as I am no help just starting this journey bc 1/4/11 lumpectomy 1/14/11 and port and more tissue taken out 2/8 waiting to start chemo in 2 wks and then rads. I have learned alot from reading all the info suggested good luck Diane
  • Rague
    Rague Member Posts: 3,653 Member
    No Neulasta with Taxol
    I only had Neulasta when I did the 4 A/C - had no pain from it at all. I did 12 weekly Taxol but no Neulasta with it.

    Susan
  • CR1954
    CR1954 Member Posts: 1,390 Member
    Welcome!
    I didn't have Taxol, but had Abraxane (a cousin to Taxol, most commonly used for mets) and Neulasta injections.
    It was the Neulasta that caused me bone pain, mostly upper legs. I finally told the onco that I couldn't take it and he put me on steroids, which did help.
    My pain would start a couple of days after the injection and last 2 or 3 days after that.
    It sounds like your pain is more severe though, and i hope that your doc finds something that helps you.

    CR
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    Welcome
    I didn't have Taxol so I can't help you there, but someone here will be able to. This is a great place to ask questions, or just read. You can also come here just to vent. We are great listeners and it helps to get it off our chests sometimes.
  • Pinkpower
    Pinkpower Member Posts: 437
    Hello Hippiechick58
    I was

    Hello Hippiechick58

    I was stage 2, ductalcarcinoma, HER2 and estrogen and proges positive, no positive nodes. I had a lumpectomy and 6months of Taxotere, Carboplatin & Herceptin (continued on Herceptin for another 6mohths) after the 1st 6months on Taxotere and carbo I did 33 rounds which were I think 6wks of radiation. The 1st 4wks were not bad at all, just a little redness in the area, I would go in the morning and then go straight to work. By the 5wk It did get so burned that I had to take a wk break before they continued with the last wk. But I have heard this does not happened to everyone. You might be lucky, who knows, but its still worth it and I would do it again. My 5 yrs plan was 1st on Tomaxifen since I was only 41 and premenapausal, (though chemo thru me into early menapause) but after my Onco and Gyno drs agreed I should have my ovaries removed due to the kind of cancer I had, I a agreed with them and had it done. Now Im on Femara for the next 5yrs. While I was on chemo I also had the neulasta shots and yes the pain was sometimes unberable and I too always stayed home 3-4 days after every treatment. So the pain in the bones is unfortunately a part of the treatment. But it does get better. So hang in there sister. We are all here for you.

    Lupe
  • fauxma
    fauxma Member Posts: 3,577 Member
    Pinkpower said:

    Hello Hippiechick58
    I was

    Hello Hippiechick58

    I was stage 2, ductalcarcinoma, HER2 and estrogen and proges positive, no positive nodes. I had a lumpectomy and 6months of Taxotere, Carboplatin & Herceptin (continued on Herceptin for another 6mohths) after the 1st 6months on Taxotere and carbo I did 33 rounds which were I think 6wks of radiation. The 1st 4wks were not bad at all, just a little redness in the area, I would go in the morning and then go straight to work. By the 5wk It did get so burned that I had to take a wk break before they continued with the last wk. But I have heard this does not happened to everyone. You might be lucky, who knows, but its still worth it and I would do it again. My 5 yrs plan was 1st on Tomaxifen since I was only 41 and premenapausal, (though chemo thru me into early menapause) but after my Onco and Gyno drs agreed I should have my ovaries removed due to the kind of cancer I had, I a agreed with them and had it done. Now Im on Femara for the next 5yrs. While I was on chemo I also had the neulasta shots and yes the pain was sometimes unberable and I too always stayed home 3-4 days after every treatment. So the pain in the bones is unfortunately a part of the treatment. But it does get better. So hang in there sister. We are all here for you.

    Lupe

    I did not have the same
    I did not have the same treatments as you but I do want to welcome you. This is definitely the place to be for advice, support, care and well just about everything. There will be many gals responding and I am sure that there are gals that have had similar treatmetns, diagnosis etc.
    I will keep you in my best thoughts.
    Stef
  • Hippiechick58
    Hippiechick58 Member Posts: 320
    fauxma said:

    I did not have the same
    I did not have the same treatments as you but I do want to welcome you. This is definitely the place to be for advice, support, care and well just about everything. There will be many gals responding and I am sure that there are gals that have had similar treatmetns, diagnosis etc.
    I will keep you in my best thoughts.
    Stef

    Thank You for WW
    Thank you all for the warm welcome and sharing of your stories. I did not expect to get responses so soon! I wish I had found this forum sooner, but I am grateful that I am here!

    I am also holding all of you in my thoughts and prayers.

    Dianne
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    Thank You for WW
    Thank you all for the warm welcome and sharing of your stories. I did not expect to get responses so soon! I wish I had found this forum sooner, but I am grateful that I am here!

    I am also holding all of you in my thoughts and prayers.

    Dianne

    Hippiechick59 .. Welcome aboard :-D
    First and foremost ...You will get through it. The waiting is really one of the hardest parts. Once you have a treatment plan in place, things will start to go a lot faster. We on this board know about the waiting and the myriad of emotions one goes through -- so let us wait with you. Post whenever you feel the urge and we'll keep you company. I think at this point it is easy to get overwhelmed with all the new things happening in your life. It might help to take things one step and one day (sometimes even one hour) at a time. Get your results, talk to your doctor, give yourself some time to digest, every visit and result. We are here 24/7.

    You will also find many wonderful, caring, uplifting, funny, amazing people along the way. Embrace your new friends, and don't get put off by old friends that stand at the side lines during your journey. People deal with 'Cancer' in different ways.

    Put your seat belt on, raise your arms up, scream and go!!!!

    Stength and Courage,

    Vicki Sam
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    Thank You for WW
    Thank you all for the warm welcome and sharing of your stories. I did not expect to get responses so soon! I wish I had found this forum sooner, but I am grateful that I am here!

    I am also holding all of you in my thoughts and prayers.

    Dianne

    Hippiechick59 .. Welcome aboard :-D
    Yikes ... my computer .. frozen .. then went crazy posting .. okay, maybe its a blond thing ...LOL
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    Thank You for WW
    Thank you all for the warm welcome and sharing of your stories. I did not expect to get responses so soon! I wish I had found this forum sooner, but I am grateful that I am here!

    I am also holding all of you in my thoughts and prayers.

    Dianne

    Hippiechick59 .. Welcome aboard :-D
    duplicate posting .. sorry!
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    Thank You for WW
    Thank you all for the warm welcome and sharing of your stories. I did not expect to get responses so soon! I wish I had found this forum sooner, but I am grateful that I am here!

    I am also holding all of you in my thoughts and prayers.

    Dianne

    Hippiechick59 .. Welcome aboard :-D
    duplicate posting ... again
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    Thank You for WW
    Thank you all for the warm welcome and sharing of your stories. I did not expect to get responses so soon! I wish I had found this forum sooner, but I am grateful that I am here!

    I am also holding all of you in my thoughts and prayers.

    Dianne

    Hippiechick59 .. Welcome aboard :-D
    ...
  • phoenixrising
    phoenixrising Member Posts: 1,508
    Hi Hippiechick and welcome!!
    Hi Hippiechick and welcome!! I had horrific bone pain from Taxotere (a sister to Taxol). It was so bad I had to use morphine for the pain. When one looks at the tx plan for Breast cancer it's hard not to get depressed and wonder how you will get through it esp if you are already feeling like crud. You may actually be getting the worse of it behind you. Many women have minimal complaints with rads and the hormone treatment. I don't know anything about reconstruction but most admire the new "girls" :) and think it's worth it. Looking at the whole picture can be daunting and it might be easier to take each step as it comes. You will marvel at the strength you find within yourself.

    Do you by any chance have osteoporosis? I do. A pharmacist I know wondered if there was a link between the Taxotere pain and those who have osteo...just a thought.

    Best of luck to you with your treatment and we look forward to you coming here often and getting to know each other a little bit more. :)

    hugs
    jan
  • Katz77
    Katz77 Member Posts: 598
    Welcome, welcome....
    Let me start out by saying, hello and cancer sucks. Lol
    This board is a wealth of information. Course it is our own experience and your docs always should be told about health concerns. So with that said... My treatment very much like yours. Had unimastectomy june09 with er,pr and her2 positive. Depends which doc u talk to,18/20 to 28/30 ax nodes positive. Lol Had a/c,taxol and 30hits of rads. I personally think the neulasta shots is what made my bones feel like broken glass. Ohhh my spine,geezzzz. Felt like bone spasms. I know thats not possible, but my head would pull backwards like a spasm. Advil actually helped more than hydrocodone for me. Heating pad.
    I hated the shots. I dont really recall much probs with taxol. Bones hurt, but not like before. Far as that goes, they still hurt, but learn to live with it I guess. I try to walk everyday too. Do stretches, nothing strenous.
    Have you had bone density test? If not, please inquire about getting one. Chemo and the meds were on like to eat our bones, breakfast, lunch and dinner. Do you take calicum? Ok enough of my babbles. Again welcome and hope you feel better. This place is open 24/7, 365 days a yr. Oh Happy Valentines to you,Katz
  • Katz77
    Katz77 Member Posts: 598
    Welcome, welcome....
    Let me start out by saying, hello and cancer sucks. Lol
    This board is a wealth of information. Course it is our own experience and your docs always should be told about health concerns. So with that said... My treatment very much like yours. Had unimastectomy june09 with er,pr and her2 positive. Depends which doc u talk to,18/20 to 28/30 ax nodes positive. Lol Had a/c,taxol and 30hits of rads. I personally think the neulasta shots is what made my bones feel like broken glass. Ohhh my spine,geezzzz. Felt like bone spasms. I know thats not possible, but my head would pull backwards like a spasm. Advil actually helped more than hydrocodone for me. Heating pad.
    I hated the shots. I dont really recall much probs with taxol. Bones hurt, but not like before. Far as that goes, they still hurt, but learn to live with it I guess. I try to walk everyday too. Do stretches, nothing strenous.
    Have you had bone density test? If not, please inquire about getting one. Chemo and the meds were on like to eat our bones, breakfast, lunch and dinner. Do you take calicum? Ok enough of my babbles. Again welcome and hope you feel better. This place is open 24/7, 365 days a yr. Oh Happy Valentines to you,Katz
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    Hi Hippiechick and welcome!!
    Hi Hippiechick and welcome!! I had horrific bone pain from Taxotere (a sister to Taxol). It was so bad I had to use morphine for the pain. When one looks at the tx plan for Breast cancer it's hard not to get depressed and wonder how you will get through it esp if you are already feeling like crud. You may actually be getting the worse of it behind you. Many women have minimal complaints with rads and the hormone treatment. I don't know anything about reconstruction but most admire the new "girls" :) and think it's worth it. Looking at the whole picture can be daunting and it might be easier to take each step as it comes. You will marvel at the strength you find within yourself.

    Do you by any chance have osteoporosis? I do. A pharmacist I know wondered if there was a link between the Taxotere pain and those who have osteo...just a thought.

    Best of luck to you with your treatment and we look forward to you coming here often and getting to know each other a little bit more. :)

    hugs
    jan

    Welcome a-board
    Hope we can provide the support and understanding you need. I found this group amazing simply because they all understood - even if we were different in terms of type of BC, treatments, or side effects.

    I can tell you that my radiation was a piece of cake compared to chemo (taxotere and cytoxin) and I started Arimidex 2 months ago and am having absolutely no side effects. We're all different and you won't know how you'll react until you do, doggone it.

    Sorry you're having such a hard time with bone pain. It's quite common, but I had only minor aches for a couple of days.

    Good luck on your journey. We're all here to do whatever we can to help. Seems like there's always someone with the answer we need.

    Suzanne
  • Miss Murphy
    Miss Murphy Member Posts: 302
    Don't Have
    the same experience as you but I do want to wlecome you to this board. There are lots of caring,supportive people here and always someone that can answer a question who has been thru what you are going thru. I had Stage one, estrogen positive. I just needed hormone pills. Started off on the AI (aromatase drugs) and had bad SE so went on tamoxifen. I still have SE but not as bad. I have two more years to go and believe me, I'm counting the days! I can't help you with any chemo or rad questions but I did have a masectomy with no reconstruction and then the hormone drugs so if I can answer any questions about either of those issues, I'll be happy to.

    Sorry you are having such a hard time right now - I'm sending positive thoughts and hugs out to you. Sally
  • Miss Murphy
    Miss Murphy Member Posts: 302
    Don't Have
    the same experience as you but I do want to wlecome you to this board. There are lots of caring,supportive people here and always someone that can answer a question who has been thru what you are going thru. I had Stage one, estrogen positive. I just needed hormone pills. Started off on the AI (aromatase drugs) and had bad SE so went on tamoxifen. I still have SE but not as bad. I have two more years to go and believe me, I'm counting the days! I can't help you with any chemo or rad questions but I did have a masectomy with no reconstruction and then the hormone drugs so if I can answer any questions about either of those issues, I'll be happy to.

    Sorry you are having such a hard time right now - I'm sending positive thoughts and hugs out to you. Sally
  • Miss Murphy
    Miss Murphy Member Posts: 302
    Don't Have
    the same experience as you but I do want to wlecome you to this board. There are lots of caring,supportive people here and always someone that can answer a question who has been thru what you are going thru. I had Stage one, estrogen positive. I just needed hormone pills. Started off on the AI (aromatase drugs) and had bad SE so went on tamoxifen. I still have SE but not as bad. I have two more years to go and believe me, I'm counting the days! I can't help you with any chemo or rad questions but I did have a masectomy with no reconstruction and then the hormone drugs so if I can answer any questions about either of those issues, I'll be happy to.

    Sorry you are having such a hard time right now - I'm sending positive thoughts and hugs out to you. Sally