Should I stop chemo?

Hello everyone! I haven't posted in a while, been going through chemo. That's the problem. I have had a horrible time with it. I'm taking Taxotere/Cytoxin and have had 2 out of 4 treatments. I'm on my 3rd onc and they all suck. They dont listen to my concerns or side effects till something goes wrong and then they dont even do anything about it.

For example I had neutropenic fever my 1st treatment, hospital for 3 days. I didnt get Neulasta the 1st tx, but now am getting it with 2nd. 1st chemo was hard but doable. 2nd tx was ungodly. Was in terrible stomach pain/nausea and in hospital for that. Onc said to take Advil. Emg room doc gave me Morphine. Was also in hospital for shortness of breath and chest pain for 2 days. I felt like death for a good week and I just dont think I can do it again! I have had 3 children, 2 natural with no pain meds and I feel that was nothing compared to the stomach/GI pain/nausea/chest pain/ mouth and private area sores and burns and all the "usual" side effects. I drink a gallon of water a day, eat well and do all the "right" things and I'm still afraid to do this again. I feel like I would have to be hospitalized to continue this. I'm an RN and not a wimp or psycho but I know my oncs think I'm nuts. I just want to hang up the chemo thing and move on to radiation. What do you all think?
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Comments

  • carkris
    carkris Member Posts: 4,553 Member
    I had a pretty lousy time
    I had a pretty lousy time with chemo too, I did not want to go either. My docs were astounded that I was so sick.. hmmm I am also an R.N. anyway, I crawled acrosds that finish line but in retrospect am glad I did it. So i can feel I did everything. I am so sorry you are going through this. You will come out the other side !!
  • tjohnson2310
    tjohnson2310 Member Posts: 168 Member
    Sorry
    I am so sorry you are going through this.Is there any way they can make changes to your treatment regimen. I know chemo has side effects but you seem to be having adverse reactions to the medication.
  • missrenee
    missrenee Member Posts: 2,136 Member

    Sorry
    I am so sorry you are going through this.Is there any way they can make changes to your treatment regimen. I know chemo has side effects but you seem to be having adverse reactions to the medication.

    Oh, honey I feel so bad that you are having to go through this
    You are really having some wicked side effects. I can't understand what you said about the doctor not really giving you much for all of your issues. Mine did tell me that whatever I was experiencing to call the office and they would have something that could help me--maybe not take it away entirely, but certainly help. Stopping chemo is such a personal decision. I can't tell you yes or no. I just hope that if you continue to call your doctor and speak with him or her, you can get some relief for your side effects.

    Try to hang in there and you'll be in my thoughts and prayers.

    Hugs, Renee
  • Rague
    Rague Member Posts: 3,653 Member
    Only you can decide -
    what is right for you AND your family.

    I was given the option to stop Taxol before I had the 10th weekly dose as I had been completely and UTTERLY EXHAUSTED the entire time on it (A/C hadn't been bad) so that I existed only on the couch or in bed. Dr. T. told me that the Taxol had done about 90% of what it could do so he wrote orders that I could quite if I wanted to. It didn't take me but a second to see Hubby's, Son's and G'daughter's faces and knew that there was no way that I could face them IF I didn't do everything I could to beat the Monster so I managed to make it through the last 3 weekly doses of it.

    None of us can tell you what you should do - we can only give our personal experiences and thoughts for you to mull over and make the decision that you know is the best decision for you AND your family.

    Thoughts and prayers.

    Susan
  • epark
    epark Member Posts: 339
    Rague said:

    Only you can decide -
    what is right for you AND your family.

    I was given the option to stop Taxol before I had the 10th weekly dose as I had been completely and UTTERLY EXHAUSTED the entire time on it (A/C hadn't been bad) so that I existed only on the couch or in bed. Dr. T. told me that the Taxol had done about 90% of what it could do so he wrote orders that I could quite if I wanted to. It didn't take me but a second to see Hubby's, Son's and G'daughter's faces and knew that there was no way that I could face them IF I didn't do everything I could to beat the Monster so I managed to make it through the last 3 weekly doses of it.

    None of us can tell you what you should do - we can only give our personal experiences and thoughts for you to mull over and make the decision that you know is the best decision for you AND your family.

    Thoughts and prayers.

    Susan

    I'm going to my second treatment
    tomorrow and im dreading it...my first treatment was terrible and was out of commission for about a week... at that time I wanted to quit but i thought about my husband and my two girls ( 16 and 13) and how much they need me around so I told myself i would do 5 more treatment(16weeks)of hell for years with them...Not to mention that I wrote on this board about it and these wonderful women help me get through it..

    Take Care
    Eva
  • GrandmaJ
    GrandmaJ Member Posts: 209
    Chemo
    So sorry to hear you have had such a tough time of the Cytoxan and Taxotere. I was on the same cocktail. I was given Emend the day before chemo, the day of chemo and the day after chemo. ALso, some sort of steroids (forget the name), maybe Zofran? . I was also on daily Nexium and before I got the chemo, they gave me Pepcid and Ativan IV. Never had any stomach problems whatsoever.

    When I developed fever after first treatment, I was put on Cipro. Also given Cipro for mouth sores. When I got diarrhea, they handled that with Lomotil. It was not picnic, but I never missed more than two days of work after each treatment. Fatigue was the only thing that they didn't have a pill for !!!

    Good luck. Hope you do better next time, but you can't quit now.

    Judy
  • tko683
    tko683 Member Posts: 264 Member
    sorry you are feeling so bad
    I remember feeling the same way about wanting to just stop the chemo so I coul feel better but I just forced myself to do it. I kept thinking of my 3 kids and husband and told myself I would keep going until it was unbearable. I had the Adriamycin and Cytoxan for 4 cycles and the Taxotere alone for 4 months. The I had Herceptin for a year. For me, the first 3 chemos were the worst, and they seemed to get easier after that so maybe that will happen for you also. We will all be praying for you to have the strength to get through your treatment but just know that you are in charge and can stop it if it becomes too much to hande. Hugs,
  • Annette 11
    Annette 11 Member Posts: 380
    Corinna
    So sorry to hear what you are going thru. I had the same Tax/Cyt., 4 treatments also. I didn't have as many side effects as you are having. It sounds awful. I was given Emend for 3 days and steroids. The med's certainly help. The doctor and nurses needs to listen to you. Now that you are home, I would call the office and insist on talking to someone who will take you serious. They sound very unprofessional. Hope you get thru to them.
    Hugs,
    Annette
  • susie09
    susie09 Member Posts: 2,930
    missrenee said:

    Oh, honey I feel so bad that you are having to go through this
    You are really having some wicked side effects. I can't understand what you said about the doctor not really giving you much for all of your issues. Mine did tell me that whatever I was experiencing to call the office and they would have something that could help me--maybe not take it away entirely, but certainly help. Stopping chemo is such a personal decision. I can't tell you yes or no. I just hope that if you continue to call your doctor and speak with him or her, you can get some relief for your side effects.

    Try to hang in there and you'll be in my thoughts and prayers.

    Hugs, Renee

    I am so very sorry that you
    I am so very sorry that you are having such a terrible time with chemo. I can't tell you whether you should stop or not. That is only your choice, and, yours alone. I will put you in my prayers.


    ♠♣ Love, Susie ♠♣
  • dbhadra
    dbhadra Member Posts: 344 Member

    Corinna
    So sorry to hear what you are going thru. I had the same Tax/Cyt., 4 treatments also. I didn't have as many side effects as you are having. It sounds awful. I was given Emend for 3 days and steroids. The med's certainly help. The doctor and nurses needs to listen to you. Now that you are home, I would call the office and insist on talking to someone who will take you serious. They sound very unprofessional. Hope you get thru to them.
    Hugs,
    Annette

    I am so sorry that you are having so many side effects
    I really hope that you can find a doctor who will listen to your concerns and give you the right pre-meds. I had Emend, steriods, Benadryl, before Taxol and same except the Benadryl before my FEC. The first FEC was awful and then I found they did not give me the full dose of steriods as I had previously cut down while on Taxol.

    There should be medications to deal with these side effects; you should not have to feel so awful that you are thinking about stopping chemo. Please pursue the doctors until they can give you something to relieve your symptoms.

    About the Neulasta - my onc initially did not want to give me Neulasta with my FEC treatment but I basically insisted on it and was glad I did as the first week of my FEC treatment my daughter was sick with a cough/sore throat which she gave to me. Luckily the Neulasta had kicked up and my WBCs were back up so it turned out to be not an emergency though I did get IV antibiotics. I took Claritin (OTC allergy drug) with the Neulasta and did not experience any bone pain which is one of the possible side effects. I was told about the Claritin by the chemo nurses who said it works well for many patients.

    Hope you are feeling better soon,

    Laura
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Chemo is one of the hardest
    Chemo is one of the hardest things I have ever done. To continue or not continue has to be your individual choice. Whatever you choose, you will have our support.

    If you choose to continue, please come here when you have a specific side effect, we'll be happy to give you our input on each and every one of them. Here's my input on some of what you mentioned...

    stomach/GI pain, is this chemo related heartburn? I took omeprazole (the prescription version of pepcid I think)in the am and pm for that.

    nausea...did your doc prescribe Zofran? If so, take it proactively don't wait for the nausea to hit and then take it. I took it 3xday for the first 3 days after treatment, as needed after that. If you have Zofran, and it's not working ask for something else. I was told there are about 9 different anti-nausea meds they can prescribe.

    mouth pain...I didn't have too much trouble with this. But others here suggest chewing on ice chips during treatment to minimize sores. I do recommend biotene toothpaste and/or mouthwash. You should be able to find it in the dental isle at your local store.

    chest pain...could be the bone pain associated with the Neulasta? I had neupogin (a cousin) and took claratin (not Claratin D) to relieve the bone pain. It worked like a charm! I took 1 per day for the nine days surrounding the neupogin injections.

    all these meds can cause severe constipation. I took Senna and Colace (sp?) for the first three days after treatment. After that I had to switch to immodium for the diarrhea.

    private area sores...if this is from constipation/diarrhea try a diaper rash ointment.

    Please be sure to check with your oncologist before trying any of these. It is really important that he/she be aware of everything you take.

    Best wishes, and please let us know what you decide.

    Hugs,

    Linda
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    quit??????
    Here are some things to consider. If you have Triple Negative Breast Cancer you will want to seriously consider continuiing as it is quite effective and pretty much the best hope at present for treating TNBC.

    Many use Claratin for bone pain related to Neulasta. I have been using Allegra as Claratin was not the best for my allergies so I had to switch to Allegra prior to bc. Allegra did the same trick for the bone pain in my situation.

    I am sorry that you are having so many side effects. I fought hard for my hubby and grandkids. As far as I am concerned if I were to go live with Jesus today, I would be tickled pink, but it would be hard on them. So God, if it is not your plan that I come to live in your house today, I will continue to fight cause I know you also are concered with my family member's hearts as well. Help Corina to find some strength in her road for treatment. Help the doctors to LISTEN to her. Let her make a wise decision based on her personal circumstances. I ask this in Jesus name. Amen.
  • CAchick
    CAchick Member Posts: 277
    I had same drugs...
    Corinna,
    I had the same drugs -Taxotere and Cytoxan. I got steroids IV before the infusion (Prednisone, I think) and Zofran for my nausea. I also got a Neulasta injection after each tx. I didn't have near the side effects you are having. While I know that everyone is different, I agree with one of the sisters who said you might be having adverse reactions to the meds...I wonder if you need a different type? I don't think your onc is responsive enough, but that is just my opinion...I am so, so, so sorry you are having so much difficulty...You are in my prayers.
    Hugs and best wishes as you decide your next move,
    Sybil
  • Corinna11
    Corinna11 Member Posts: 75

    Chemo is one of the hardest
    Chemo is one of the hardest things I have ever done. To continue or not continue has to be your individual choice. Whatever you choose, you will have our support.

    If you choose to continue, please come here when you have a specific side effect, we'll be happy to give you our input on each and every one of them. Here's my input on some of what you mentioned...

    stomach/GI pain, is this chemo related heartburn? I took omeprazole (the prescription version of pepcid I think)in the am and pm for that.

    nausea...did your doc prescribe Zofran? If so, take it proactively don't wait for the nausea to hit and then take it. I took it 3xday for the first 3 days after treatment, as needed after that. If you have Zofran, and it's not working ask for something else. I was told there are about 9 different anti-nausea meds they can prescribe.

    mouth pain...I didn't have too much trouble with this. But others here suggest chewing on ice chips during treatment to minimize sores. I do recommend biotene toothpaste and/or mouthwash. You should be able to find it in the dental isle at your local store.

    chest pain...could be the bone pain associated with the Neulasta? I had neupogin (a cousin) and took claratin (not Claratin D) to relieve the bone pain. It worked like a charm! I took 1 per day for the nine days surrounding the neupogin injections.

    all these meds can cause severe constipation. I took Senna and Colace (sp?) for the first three days after treatment. After that I had to switch to immodium for the diarrhea.

    private area sores...if this is from constipation/diarrhea try a diaper rash ointment.

    Please be sure to check with your oncologist before trying any of these. It is really important that he/she be aware of everything you take.

    Best wishes, and please let us know what you decide.

    Hugs,

    Linda

    Ill try to explain what I've
    Ill try to explain what I've been doing so far... BTW Thanks SOOO much for all the advice /prayers!!!

    * Stomach has been having real painful cramping for days at a time. (On the bathroom floor "dont touch me" kind of pain. Gets worse each treatment. Cant eat /drink because it gets worse. Have some morphine for that now prescribed by an ER doc. Thats what my onc told me to take Advil for...

    * Nausea 1st time was controlled by Zofran and Phenergan 8mg every 8 hours and 25mg for 8 days straight. 2nd time I increased the Zofran to every 6 hours and all the above. Still was horribly nauseous for about 10 days.

    * Mouth pain/sores for about 6 days. Good oral hygiene pretty much made it OK to deal with.

    * Yes, had real bad heartburn but also chest tightness/cant take deep breath kind of feeling for days.

    * Neulasta bone pain was only for a day or 2. Pretty bad but I took some pain meds and it was OK.

    * The private area stuff has been the entire time. Have diaper rash cream always on. Even without stool issues my skin is just raw/ulcers keeps me up at night. I know this is TMI but I cant even wear underwear because it is so sore.

    * None of this includes the fatigue (which is manageable even though I cant stay in bed), the other side effects: ears/neck/eyes/throat/etc. etc. hurt and generally feel like I'm crawling out of my skin.

    Just seems like this is not normal for side effects. I do know that I dont get IV steroids but some by mouth. No Emend, just the Zofran/Phenergan. I want to continue but I'm scared to.
  • carkris
    carkris Member Posts: 4,553 Member
    CAchick said:

    I had same drugs...
    Corinna,
    I had the same drugs -Taxotere and Cytoxan. I got steroids IV before the infusion (Prednisone, I think) and Zofran for my nausea. I also got a Neulasta injection after each tx. I didn't have near the side effects you are having. While I know that everyone is different, I agree with one of the sisters who said you might be having adverse reactions to the meds...I wonder if you need a different type? I don't think your onc is responsive enough, but that is just my opinion...I am so, so, so sorry you are having so much difficulty...You are in my prayers.
    Hugs and best wishes as you decide your next move,
    Sybil

    I had such severe reactions
    I had such severe reactions that they did decrease the dose of adriamycin on my last one, also would taxol be better? prior to taxol I received pepcid IV. some people chew ice during their infusion and they swear they dont get mouth sores. sometimes if you post your specific problems, people have some great and unique answers.
    Not trying to dismiss your symptoms, they are pretty horific and I have had the experience of them looking at me like there is somethihg wrong with me. I posted on here when I was going through it that I felt like a chemo failure, and really felt they couldnt help me. It was an awful helpless feeling. Being a nurse I felt that I should be able to somehow find a solution, but for me the only solution was the end of chemo. There are others here you have also had 'experience not typical" in not a good way, blown away, sunrae, cave diver to name a few. If there could be some solution to even a few of your symptoms, then perhaps the last one could be doable. Because I was in such a weakend condition, I didnt have the where with all to jump up and down and scream, but thats what you should do. MAKE THEM help you and pay attention. I finally did that at the end.
    I cant tell youwhat to do, I hope people will post especially the ones who decided to stop before treatment was done, this could give you some other perspective. I was given the option of not finishing the last taxol as I had severe neuropathy but in the end i did it, and now am glad I did.
  • Ssmitty67
    Ssmitty67 Member Posts: 2
    I hope all gets better
    I had 16 treatments of Chemo and finished in June. One thing that prevented mouth sores was drinking ice water during the treatment. Sometimes I would treat myself and get a sugar free frap and sip on that. They administered benadryl, steriods and peptin before the chemo meds and that prevented the initial skin rash that I had after the first treatment. The others help with stomach pain and feeling tired. Best of luck to you!
  • Corinna11
    Corinna11 Member Posts: 75
    Ssmitty67 said:

    I hope all gets better
    I had 16 treatments of Chemo and finished in June. One thing that prevented mouth sores was drinking ice water during the treatment. Sometimes I would treat myself and get a sugar free frap and sip on that. They administered benadryl, steriods and peptin before the chemo meds and that prevented the initial skin rash that I had after the first treatment. The others help with stomach pain and feeling tired. Best of luck to you!

    Now that I feel better (I'm
    Now that I feel better (I'm due for another tx next Tues) I'm thinking I need to do it again. My kids are afraid the CA will come back if I dont (had it in a lymph node). I have to be here for them (bad marriage) either way. Im just so freaked out by all the pain I had last week that I'm making myself sick thinking about it in anticipation.
  • sbmly53
    sbmly53 Member Posts: 1,522
    Oh, Sweetie,
    You are in my prayers. It's a hard decision you are contemplating, but you must do what you feel is right for you. I'm glad you are feeling a little better.

    Sue
  • grams2jc
    grams2jc Member Posts: 756
    Corinna11 said:

    Now that I feel better (I'm
    Now that I feel better (I'm due for another tx next Tues) I'm thinking I need to do it again. My kids are afraid the CA will come back if I dont (had it in a lymph node). I have to be here for them (bad marriage) either way. Im just so freaked out by all the pain I had last week that I'm making myself sick thinking about it in anticipation.

    Slowing my infusion helped so much
    My first Taxol nearly did me in. I had done epirubicin and cytoxan 4 treatments 3 weeks apart. The Taxol was done the same way, but instead of a 4 hour drip we had to slow to 5 1/2 or 6 hours. Talk about a huge difference! I got steroids, benadryl and antinausea meds before the drip and then took benadryl for the bone pain. It was night and day difference and I never would have believed that slowing it down would have changed it so much. (It did make a reallllly long day) The Taxol did give me an elevated heart rate, no fun.

    I am hoping and praying that you have been through the worst of it,

    Jennifer
  • pinkpalette
    pinkpalette Member Posts: 112
    sbmly53 said:

    Oh, Sweetie,
    You are in my prayers. It's a hard decision you are contemplating, but you must do what you feel is right for you. I'm glad you are feeling a little better.

    Sue

    I know how you feel...
    Corinna, I am in the middle of my chemo, had 3 treatments, 3 more to go, and I agree with how you are feeling - 100%! The side effects you described in detail - I am having pretty much the same to some extent or another. I just saw my Onc. last week and was describing my misery and basically he suggested anti-depressants and something for my crusty eyes (from the Taxotere he said). I can't agree more that I am sick of the treatments. I know how I am going to feel and I dread going to the chair to start the misery all over again. My next treatment is this coming Monday. Ugh! I know I gotta do this, that it is best for the best outcome! Most of all, I have to do it for my family.

    I can only say I know exactly how you feel. This is the hardest thing I ever had to do. It will take everything in me to go. I hope to have this experience behind me as soon as I possibly can. It is dreadful! Please be strong. I know you'll make the best decision. We can whip this cancer, one day at a time!!!!

    hugs,
    Debbie