Miserable on chemo--just want to quit!

jackies
jackies Member Posts: 28
edited March 2014 in Breast Cancer #1
Hi everyone. It's Jackie. I haven't checked in for a while, but I really need some wisdom/empathy. I finished my 4 courses of Adriamycin/Cytoxan. Last week I got the 1st of 4 courses of Taxotere. I was told this would probably be easier on me. Wrong! The first 2 days were better, but then it hit! I have been in "total body pain" for the past 3 days. Literally everything hurts! I'm not just talking body aches. The pain is so intense, I've had to take Percocet round the clock! I've become very depressed and just want to quit chemo and have surgery. I honestly don't know how I'll make it thru 3 more treatments. And as miserable as I feel now, if I do manage to finish chemo, I don't see how I can possibly continue working. Between the pain and the fog from the Percocet, I'm not much good these days. And I can't help but worry, if the chemo is affecting me so severely, what other nasty effects is it having on my body? Can anyone give me any info about going on disability? I'm afraid I may have to resort to that, if I have any hopes of seeing this thru. Sorry to be such a stick-in-th-mud, but I have reached an all-time low. Jackie
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Comments

  • tiger
    tiger Member Posts: 277
    Howdy ho!!Tiger here, I responded before i read this message posted to all, your response from me is titled,Jackies pain,oh my!! It was supposed to have a few commas, and not come through sounding like I meant oh poor Jackie wah wah pain. I am sympathizing, I just did not want you to take the wrong tone when reading it. Love and hugs.Tiger
  • This comment has been removed by the Moderator
  • murphy
    murphy Member Posts: 38 Member
    Hi Jackie, I just read your post, I am sorry you are feeling so bad, but believe me it will pass. You mentioned Taxotere, well I had Taxol and it did the same to me and I too took percocet, I do know how you feel, but mine only lasted 3 days but was the same each of my 4 treatments, then I was able to resume as much of a normal life as chemo would allow. I do not seem to have any lasting effects from any of it, I have been out of treatment since Jan. I guess I can't give you any advice on going on disability, when I started chemo I quit my job because I wanted to concentrate on getting better, but I am back working now a different job, but that was my choice. I think the percocet tends to make you feel a bit depressed and it is addictive, I would ween myself after each treatment and would have a couple of sleepless nights. I really hope you start to feel better very soon, I know I would think the same thing, I just can't do this again but once the pain was gone I thought well that wasn't all that bad.....sort of like labor....ha ha. Take care and hang tough and remember this too shall pass. God Bless Murphy
  • jane38
    jane38 Member Posts: 123
    Jackie. I'm with you sweetie. Taxotere is a very powerful drug. It doesn't have the nausea associated with it that Cytoxan and Adriamycin do, but the pain is almost unbearable. I, too, was ready to hang it up and take my chances. But, my oncologist recommended that perhaps I was not tolerating the steroid very well and needed a Medrol Dose-Pak to come down off of it. My last two doses were great. The dose-pak helped tremendously. Perhaps that is something you can suggest to your doctor. When I came off the Decadron my whole body crashed and it hurt worse than anything I have ever experienced. But, with the Medrol dose-pak, the pain was not nearly so severe and easily tamed. Try it. Jane
  • maggie
    maggie Member Posts: 71
    Hey Jackie! I am sorry to hear that you are feeling really bad. I too took a chemo drug that cause alot of pain. I took 4 rounds of the Red devil and then 4 rounds of Taxol. I have never experience pain like that before. I too was ready to give up, but I just kepted praying and asking God to help me with this awful pain. I usually got the pain on the 3rd day and it lasted about 3 or 4 days. Just keeping taking those pain-killers and don't give up.(don't let the cancer beat you) Take care and I will remember you in my prayers each day. Maggie
  • patsharkey
    patsharkey Member Posts: 7
    Hi Jackie

    I am sorry to hear you are feeling so low, and hope you are now feeling brighter. I have had two rounds of epirubicin and taxotere, and both times I felt suicidal. After 2 days I felt pain all through my back, and in my weak spots. I felt as if I wanted to die. I had not realised that the pain might be a side-effect of my drugs. I have not yet recovered from this bout, but last time I know I woke up one morning feeling better, and I was sure I wanted to live. Maybe when it gets better we should write a list of the good things we have to live for, and keep it in front of us for next time.

    We have so much rain and floods here in England that I feel the weather is in mourning with me. But the rain will eventually stop, and life will get better. Please don't give up, and remember how much you are loved, by your family, your friends, and by God.


    Love from PAT
  • tiger
    tiger Member Posts: 277
    murphy said:

    Hi Jackie, I just read your post, I am sorry you are feeling so bad, but believe me it will pass. You mentioned Taxotere, well I had Taxol and it did the same to me and I too took percocet, I do know how you feel, but mine only lasted 3 days but was the same each of my 4 treatments, then I was able to resume as much of a normal life as chemo would allow. I do not seem to have any lasting effects from any of it, I have been out of treatment since Jan. I guess I can't give you any advice on going on disability, when I started chemo I quit my job because I wanted to concentrate on getting better, but I am back working now a different job, but that was my choice. I think the percocet tends to make you feel a bit depressed and it is addictive, I would ween myself after each treatment and would have a couple of sleepless nights. I really hope you start to feel better very soon, I know I would think the same thing, I just can't do this again but once the pain was gone I thought well that wasn't all that bad.....sort of like labor....ha ha. Take care and hang tough and remember this too shall pass. God Bless Murphy

    Hey Jackie, Tiger here, how are you doing today? I am going on Wed for my Taxol,so I am gearing myself up for the pain. My onco first told me that most women tolerate this chemo very well and left it at that, well when my pain hit I could have killed him for not preparing me better, but then I realized that he did not want to put me in the frame of mind that this is bad stuff and maybe scare me off it. It does work,we just have to fight our way through it together. I am going to ask for a prescription for Paxcil, the antidepressant, I find myself thinking nasty thoughts when I first have taxol,usually about a week I am ready to kill myself, and sooooo tired, but the paxcil is apparently very good, relieves the depression and gives you a boost of energy too. Keep in touch and we can moan and whine to each other about the pain,at least we all know where you are coming from!! Just remember, Dont give up, this stuff really WORKS!!!! We have gone this far, so lets keep going, and it will be easier because we have each other. Love and a big hug. Tiger xoxo
  • freddi
    freddi Member Posts: 2
    Dear Jackie, I , too, just finished the Taxotere arm, and like you I was told it would be easier...wrong! I didn't have the bone pain, MY TONGUE SLOUGHED OFF!!!!!!!!!!! Sounds neat, hunh? I think I would have prefered the bone pain, but I never had a single minute of it. I really don't think they have a clue as to what this stuff really does to us, but who are we to argue? What was your cell grade? Not stage... cell grade...nosy me.
  • sueholm
    sueholm Member Posts: 205
    freddi said:

    Dear Jackie, I , too, just finished the Taxotere arm, and like you I was told it would be easier...wrong! I didn't have the bone pain, MY TONGUE SLOUGHED OFF!!!!!!!!!!! Sounds neat, hunh? I think I would have prefered the bone pain, but I never had a single minute of it. I really don't think they have a clue as to what this stuff really does to us, but who are we to argue? What was your cell grade? Not stage... cell grade...nosy me.

    freddi, just saw your request to jackei for her cell grade. mine is grade 2 on ellis scale 1-3. i'm curious why yu particularly interested in that in this context. susan
  • loulou
    loulou Member Posts: 65 Member
    tiger said:

    Hey Jackie, Tiger here, how are you doing today? I am going on Wed for my Taxol,so I am gearing myself up for the pain. My onco first told me that most women tolerate this chemo very well and left it at that, well when my pain hit I could have killed him for not preparing me better, but then I realized that he did not want to put me in the frame of mind that this is bad stuff and maybe scare me off it. It does work,we just have to fight our way through it together. I am going to ask for a prescription for Paxcil, the antidepressant, I find myself thinking nasty thoughts when I first have taxol,usually about a week I am ready to kill myself, and sooooo tired, but the paxcil is apparently very good, relieves the depression and gives you a boost of energy too. Keep in touch and we can moan and whine to each other about the pain,at least we all know where you are coming from!! Just remember, Dont give up, this stuff really WORKS!!!! We have gone this far, so lets keep going, and it will be easier because we have each other. Love and a big hug. Tiger xoxo

    Hi tiger, loulou here, the treatment I was on was taxol, and carboplatin, but I was wondering when you guys are talking about the pain you get from the taxol, are you talking about those high pitch really sharp pangs that zing you in your shins, or chest, arms, all over basically? Where walking across the floor was quite the task? If so, I remember those well! But, like you said IT WORKS..... It always hit me three days after my infusion, and lasted about four. Like you though, after a few months you get tired deep inside, I have never experienced such a tired before. When your tired REST! Ok..... later, loulou
  • nancys
    nancys Member Posts: 323
    Oh Jackie, I am so sorry to hear you are in such pain. You posted on the 5th and today is the 10th and I so hope you are better. I know from talking with you before that you are a very strong person so this pain must be very bad. I questioned my Onco about Taxol (my last 4 rounds will be Taxol) and he would not tell me it would be bad. I have just had my second round of A/C and it takes me about 8 days to feel human again. Tomorrow is day #8. You recomended Zofran to me but I don't think it helps much. I have used Ativan and Zofran. They give me Anzemet with the chemo but I am afraid if I use it all the time, it will not work for me when I really need it badly. Let me know how you are doing. All I can do is pray for you and I will say many prayers for you all day. Your Friend, Nancy
  • mjdp2
    mjdp2 Member Posts: 133
    Dear Jackie,
    I was diagnosed in June 1998 just when it was suggested that 4 cources of A/C followed by 4 Taxol treatments (Taxotere is a related drug) would be beneficial. I too was told by my doctor that the Taxol would not make me as sick as the A/C. During my first Taxol infusion my hands and feet swelled up. The intense pain started 3 days later the the swelling did not go down for 10 days. I could not even put on sandals. I felt I was walking on a bed of nails with each step. After consulting with a college friend who is now a medical doctor and ran clinical trials of A/C with Taxol, I decided to not continue with any more Taxol as I did not want to spend the rest of my life unable to walk. My oncologist said it would be OK to stop. The major benefit of the chemo had already come thru the A/C. The pain/tingling (neuropathy) took over 18 months to subside. Even now I have some tingling in my hands and feet. I feel that the severity of side effects of this drug are not fully disclosed. I am so happy to find other cancer patients who have shared the same experience though unpleasant. My oncologist made me feel like a medical oddity but through sharing and talking with other women, I think these severe side effects are more common than disclosed. Don't feel that you have to continue the chemo. It is your body and you are in control. You are in my prayers.
    Margaret in Calif.
  • catherine
    catherine Member Posts: 18
    Hello Jackies:

    My name is Catherine, a 33-year-old breast cancer patient.I am new here, I come from Taiwan. I would like to encourage you to be brave to accomplish the Chemo theraphy.

    When I was 28, I got the breast cancer, the tumor is very big so I had to take the surgery to remove my whole left breast and accept 8 courses of the Chemo in "CMF". It's such a big shock to a young lady! At first, I can't accept this truth and at that time, my boyfriend deserted me(though we've loved each other for 9 years.)

    Though I was given Chemo theraphy, unfortunately, the cancer cell spread to my spine, skull & upper brain after 2 years. Then, I cannot but have to accept the brain operation. After that, my doctor combined "Adriamycin" & "Taxol" to treat my recurrence, plus brain radiation theraphy & "Pamidronate" to strength my bone. Now, I'm healthier & more beautiful then 5 years ago.

    I think cancer patient should use our "mental power" to save our own live. I always think:"If you think you can survive, then you will." "If you think you can overcome the discomforts from Chemo, then you can." I totally understand your discomforts from Chemo theraphy for I experienced that twice! No matter how painful it is, we have to fight for ourself. I believe you can conquer these uncomfortable symptoms.

    Many people wondered why I can live so well after the brain operation? It has been 2 more years! I think "faith" & "confidence" are what I rely on in my life. Trust yourself and tell yourself every morning "I can survive!!" God will hear you and bless you in everyday, every minute.

    Please try your best to finish the Chemo, it will do you good! someday, you can say:I am very healthy now, breast cancer? Oh! come on, it's just a piece of cake!

    May God bless you and give you the tremendous power!

    Catherine Chen
  • catherine said:

    Hello Jackies:

    My name is Catherine, a 33-year-old breast cancer patient.I am new here, I come from Taiwan. I would like to encourage you to be brave to accomplish the Chemo theraphy.

    When I was 28, I got the breast cancer, the tumor is very big so I had to take the surgery to remove my whole left breast and accept 8 courses of the Chemo in "CMF". It's such a big shock to a young lady! At first, I can't accept this truth and at that time, my boyfriend deserted me(though we've loved each other for 9 years.)

    Though I was given Chemo theraphy, unfortunately, the cancer cell spread to my spine, skull & upper brain after 2 years. Then, I cannot but have to accept the brain operation. After that, my doctor combined "Adriamycin" & "Taxol" to treat my recurrence, plus brain radiation theraphy & "Pamidronate" to strength my bone. Now, I'm healthier & more beautiful then 5 years ago.

    I think cancer patient should use our "mental power" to save our own live. I always think:"If you think you can survive, then you will." "If you think you can overcome the discomforts from Chemo, then you can." I totally understand your discomforts from Chemo theraphy for I experienced that twice! No matter how painful it is, we have to fight for ourself. I believe you can conquer these uncomfortable symptoms.

    Many people wondered why I can live so well after the brain operation? It has been 2 more years! I think "faith" & "confidence" are what I rely on in my life. Trust yourself and tell yourself every morning "I can survive!!" God will hear you and bless you in everyday, every minute.

    Please try your best to finish the Chemo, it will do you good! someday, you can say:I am very healthy now, breast cancer? Oh! come on, it's just a piece of cake!

    May God bless you and give you the tremendous power!

    Catherine Chen

    This comment has been removed by the Moderator
  • tiger
    tiger Member Posts: 277
    unknown said:

    This comment has been removed by the Moderator

    Well, I was logging on to ask you all to talk me into my last dose of chemo, but after reading Catherines reply to this, I suddenly feel stronger. This last dose has been harder no matter how much I try to fool myself into thinking that it has not, but only one more Taxol, I should be able to tolerate that, I have been through so much already, whats one more dose of chemo right? I think the hardest part of the whole deal is trying not to think about the future,and what could possibly happen, after I have the taxol, my mind works overtime and I start thinking that it has spread,but I know in my heart I will be fine. I cannot believe it will be Christmas again soon, this time last year I was having appointments with Drs who all told me not to worry, its nothing, then bam!! drop the bomb on Christmas Eve day. Alot has gone on since then and I know we will all be even stronger because of our journey, and even stronger still because we have each other for support. It is amazing how quickly someone responds on here if one of us are in need. I thank God everyday for you guys, without you I dont know if I would have persevered this long, maintaining a positive attitide is difficult,but I try my best for my family,especially for my husband because he relies on me alot for strength and guidance. This time next year I will be telling you how I am doing my hair for my Christmas party, (i hope) I hope it comes in with just a little wave and dark brown. before I lost it it was dark brown,red,black, light brown and blonde for about five minutes once, I used to get bored and dye my hair all the time, but I was looking through some photos from when my youngest was six months old, and of course i thought i was ugly and fat and my hair was awful, but after going through this past year ,I see myself as pretty,finally, and just hope i can get back to that again. After what we are going through though, appearences just dont mean a whole lot like they used to . Well, I wish you all the best and lets keep the positive thoughts flowing.
    Fight the good fight. Love and hugs from Tiger xoxox
  • jane38
    jane38 Member Posts: 123
    catherine said:

    Hello Jackies:

    My name is Catherine, a 33-year-old breast cancer patient.I am new here, I come from Taiwan. I would like to encourage you to be brave to accomplish the Chemo theraphy.

    When I was 28, I got the breast cancer, the tumor is very big so I had to take the surgery to remove my whole left breast and accept 8 courses of the Chemo in "CMF". It's such a big shock to a young lady! At first, I can't accept this truth and at that time, my boyfriend deserted me(though we've loved each other for 9 years.)

    Though I was given Chemo theraphy, unfortunately, the cancer cell spread to my spine, skull & upper brain after 2 years. Then, I cannot but have to accept the brain operation. After that, my doctor combined "Adriamycin" & "Taxol" to treat my recurrence, plus brain radiation theraphy & "Pamidronate" to strength my bone. Now, I'm healthier & more beautiful then 5 years ago.

    I think cancer patient should use our "mental power" to save our own live. I always think:"If you think you can survive, then you will." "If you think you can overcome the discomforts from Chemo, then you can." I totally understand your discomforts from Chemo theraphy for I experienced that twice! No matter how painful it is, we have to fight for ourself. I believe you can conquer these uncomfortable symptoms.

    Many people wondered why I can live so well after the brain operation? It has been 2 more years! I think "faith" & "confidence" are what I rely on in my life. Trust yourself and tell yourself every morning "I can survive!!" God will hear you and bless you in everyday, every minute.

    Please try your best to finish the Chemo, it will do you good! someday, you can say:I am very healthy now, breast cancer? Oh! come on, it's just a piece of cake!

    May God bless you and give you the tremendous power!

    Catherine Chen

    Catherine, what a beautiful person you are. Welcome to our network. Your words struck home with me and reinforced my belief that as women we are strong and united we can conquer anything and everything. Jane
  • tiger said:

    Well, I was logging on to ask you all to talk me into my last dose of chemo, but after reading Catherines reply to this, I suddenly feel stronger. This last dose has been harder no matter how much I try to fool myself into thinking that it has not, but only one more Taxol, I should be able to tolerate that, I have been through so much already, whats one more dose of chemo right? I think the hardest part of the whole deal is trying not to think about the future,and what could possibly happen, after I have the taxol, my mind works overtime and I start thinking that it has spread,but I know in my heart I will be fine. I cannot believe it will be Christmas again soon, this time last year I was having appointments with Drs who all told me not to worry, its nothing, then bam!! drop the bomb on Christmas Eve day. Alot has gone on since then and I know we will all be even stronger because of our journey, and even stronger still because we have each other for support. It is amazing how quickly someone responds on here if one of us are in need. I thank God everyday for you guys, without you I dont know if I would have persevered this long, maintaining a positive attitide is difficult,but I try my best for my family,especially for my husband because he relies on me alot for strength and guidance. This time next year I will be telling you how I am doing my hair for my Christmas party, (i hope) I hope it comes in with just a little wave and dark brown. before I lost it it was dark brown,red,black, light brown and blonde for about five minutes once, I used to get bored and dye my hair all the time, but I was looking through some photos from when my youngest was six months old, and of course i thought i was ugly and fat and my hair was awful, but after going through this past year ,I see myself as pretty,finally, and just hope i can get back to that again. After what we are going through though, appearences just dont mean a whole lot like they used to . Well, I wish you all the best and lets keep the positive thoughts flowing.
    Fight the good fight. Love and hugs from Tiger xoxox

    This comment has been removed by the Moderator
  • pamtriggs
    pamtriggs Member Posts: 386
    tiger said:

    Well, I was logging on to ask you all to talk me into my last dose of chemo, but after reading Catherines reply to this, I suddenly feel stronger. This last dose has been harder no matter how much I try to fool myself into thinking that it has not, but only one more Taxol, I should be able to tolerate that, I have been through so much already, whats one more dose of chemo right? I think the hardest part of the whole deal is trying not to think about the future,and what could possibly happen, after I have the taxol, my mind works overtime and I start thinking that it has spread,but I know in my heart I will be fine. I cannot believe it will be Christmas again soon, this time last year I was having appointments with Drs who all told me not to worry, its nothing, then bam!! drop the bomb on Christmas Eve day. Alot has gone on since then and I know we will all be even stronger because of our journey, and even stronger still because we have each other for support. It is amazing how quickly someone responds on here if one of us are in need. I thank God everyday for you guys, without you I dont know if I would have persevered this long, maintaining a positive attitide is difficult,but I try my best for my family,especially for my husband because he relies on me alot for strength and guidance. This time next year I will be telling you how I am doing my hair for my Christmas party, (i hope) I hope it comes in with just a little wave and dark brown. before I lost it it was dark brown,red,black, light brown and blonde for about five minutes once, I used to get bored and dye my hair all the time, but I was looking through some photos from when my youngest was six months old, and of course i thought i was ugly and fat and my hair was awful, but after going through this past year ,I see myself as pretty,finally, and just hope i can get back to that again. After what we are going through though, appearences just dont mean a whole lot like they used to . Well, I wish you all the best and lets keep the positive thoughts flowing.
    Fight the good fight. Love and hugs from Tiger xoxox

    Dear Tiger

    One more river to cross & then you reap the rewards. You have given do much to others on this site we all are glad of the opportunity to encourage you when you need us.

    We all pray for you to find the strength we know is in you to bear it this last time.

    Love & hugs

    Pam
  • nancys
    nancys Member Posts: 323
    catherine said:

    Hello Jackies:

    My name is Catherine, a 33-year-old breast cancer patient.I am new here, I come from Taiwan. I would like to encourage you to be brave to accomplish the Chemo theraphy.

    When I was 28, I got the breast cancer, the tumor is very big so I had to take the surgery to remove my whole left breast and accept 8 courses of the Chemo in "CMF". It's such a big shock to a young lady! At first, I can't accept this truth and at that time, my boyfriend deserted me(though we've loved each other for 9 years.)

    Though I was given Chemo theraphy, unfortunately, the cancer cell spread to my spine, skull & upper brain after 2 years. Then, I cannot but have to accept the brain operation. After that, my doctor combined "Adriamycin" & "Taxol" to treat my recurrence, plus brain radiation theraphy & "Pamidronate" to strength my bone. Now, I'm healthier & more beautiful then 5 years ago.

    I think cancer patient should use our "mental power" to save our own live. I always think:"If you think you can survive, then you will." "If you think you can overcome the discomforts from Chemo, then you can." I totally understand your discomforts from Chemo theraphy for I experienced that twice! No matter how painful it is, we have to fight for ourself. I believe you can conquer these uncomfortable symptoms.

    Many people wondered why I can live so well after the brain operation? It has been 2 more years! I think "faith" & "confidence" are what I rely on in my life. Trust yourself and tell yourself every morning "I can survive!!" God will hear you and bless you in everyday, every minute.

    Please try your best to finish the Chemo, it will do you good! someday, you can say:I am very healthy now, breast cancer? Oh! come on, it's just a piece of cake!

    May God bless you and give you the tremendous power!

    Catherine Chen

    Catherine, What a powerfull message!! You are just the kind of person we need to encourage us from time to time. Stay on the site and lets hear from you again. Your Friend, Nancys
  • cekramer
    cekramer Member Posts: 33
    Hi all,

    This is my first message to the group. I am 34 and undergoing my first Taxol treatment. It has not been easier than the AC, as the docs all said it would be. I'm hoping it gets better since I have three more rounds to go.
    I'm lucky in that I only had one positive lymph node following a lumpectomy. But my grade was a 3 so I am scared of a recurrence. My family and friends have all been supportive and so I thank God for that too.
    Last week, my surgeon gave my name to a 31 year old who was just diagnosed, so that I could talk to her re. her options and treatment. It helps to have others to talk to.
    I hope everyone's doing ok this week.
    CK