18 weekly carbo/ taxol chemo treament - did anyone have to take neupogen vaccines to do the 18 wk re

His grace
His grace Member Posts: 23
edited April 2013 in Ovarian Cancer #1

New to CSN.  Just got port put in yesteday.  Taking pain medication due to the discomfort and pain from the install.  No fever or anything.  Just sore and having trouble turning my head.

Want to see if anyone has experience or is going through the 18 weekly chemo regimen.  Side effects.  Can you work? I am a mother of 2 young children.  Any advise?

Want to prep myself since I am likely to start chemo next week.

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Comments

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    Hi

    Welcome to the board!  My chemo regimen was a little different as I had six treatments of carbo/taxol every three weeks.  I myself experienced a lot of fatigue, loss of appetite and constipation for the first five or so days after each treatment.  To get ahead of the constipation, I started taking Miralax about two days before each treatment and I also took some stool softeners during my treatments.  I was able to work part-time from home but I wasn't getting my chemo on a weekly basis like you will be.  Maybe other ladies will chime in.  My chemo took place during the winter and I worked from home because my immune system was low and I didn't want to catch any cold or flu cooties from my co-workers.  I started losing my hair about three weeks in and ended up losing it all soon thereafter.  I know how traumatic the loss of hair is for many women.  I was okay with it.  And it started growing back about five weeks after my last treatment.

    For me, chemo was doable.  Hopefully, you'll have someone to help you with your children during this process.  Please let us know if you have any more questions and keep us posted on your progress.

    Kelly

  • His grace
    His grace Member Posts: 23
    Thank you Kelly. Your

    Thank you Kelly. Your experience helps me to prepare myself for the battle ahead.  I am glad that your chemo treatment went okay.  I too hope for the same.  Also plan to ask my company to work part time from home.

     

     

  • ptharp
    ptharp Member Posts: 190
    I had the same treatment

    I had the 18 weeks of Carbo and Taxol. I just finished last week. I can tell you what I experienced and what a friend of mine doing the same treatment experienced.  First, let's make sure t is the same one. I had 6 cycles. A cycle consists of 3 weeks for a total of 18 weeks. The first week I had Carbo and Taxol. The second week I had Taxol alone and the thrid week I had Taxol. Then the next cycle it would start over again. The first 3 cycles were a piece of cake. I still got out and did things, even walked a little. I started to feel a little nauseas after the Carbo during the 4th cycle. The 5th cycle is when it hit me. Durng the 5th cycle my blood counts were going down. My hemoglobin would go down and I would fee extremely breathless and my heart would beat hard. I was tired but not the kind of tired you feel after working all day. It felt like every muscle in my body had no oxygen. When I walked up stairs my legs felt like jelly. The 6th cycle was hard too. Lets, see.  I started to loose my hair around the 3rd week of chemo. It is the Taxol that does that. I just started loosing some of my eyebrows after 18 weeks.  I still have some eyelashes. The other side effects that I have experienced are: watery goopy eyes. This is a side effect from the Taxol. Taxol causes your tear ducts to clog. I have slight numbness in my left toe. I was told it will probably get better or go away all together. My Oncologst told me to take Glutemine Powder for that and I think it has helped. I have dry skin. Make sure you use lots of lotion. The Chemo caused me to be constipated so I took a senekot every night and colace. It worked. I gained 30 pounds when my chemo started. This is not unusual. You wll be on a lot of steriods. My biggest complaint and you do not hear the other woman talk much about it is my teeth. My teeth have become extremely sensitive. Even when I eat a salad out of the frdge they hurt. I am told that chemo can cause bone loss so I am thinking maybe this is why my teeth hurt. My Oncologist sad I should wait about 6 weeks before having any surgery done. I have a caterac (sp) that I need fixed and I want the Dentist to look at my teeth. I am very possitive that I will be in remission for a while or hopfully forever, but just in case  I am not I need to get these issues addressed. I hope I have helped. If you have any questions please contact me. You can email me at pamalaraye@hotmail.com if you want.  I had my last treatment last week so this week I am still feeling it. I have my scan next week to confirm if I am in remission. Good luck. Go out and enjoy yourself if you can in the first weeks.

  • His grace
    His grace Member Posts: 23
    Pam
     
    Congratulations on

    Pam

     

    Congratulations on finishing the 18th week.  And thanks for sharing your experience with me.

     It brings me comfort that someone has successfully completed the 18 wkly treatment and that there is a light at the end of the tunnel for me too. 

     

     

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    I too had the chemo dense

    I too had the chemo dense treatment for 18 weeks...my lasted more like 26 weeks due to skipping weeks due to low blood counts. You can do it. I did work parttime in the mornings which was a great distration for me while going through treatment and getting use to my dignosis. Kim

  • childofthestars
    childofthestars Member Posts: 251 Member
    Hi

    I had the 18 week dense dose treatment following de-bulking surgery.  I started treatment in Aug 2010 and finished 8 Dec 2010.  I also had a power port fitted and this was brilliant for me (I had the port removed 1 week after I completed treatment).  I worked 3 days a week the whole way through treatment.  I had some fatigue that did get worse as treatment progressed but was manageable.  I kept on top of any sickness by asking for every type of anti-sickness medication which did the trick.  The one thing I swear helped get me thru the treatment was taking Manuka Honey 20+ I honestly believe this kept my bloods at good counts and I didn't miss one treatment.  I also didn't suffer neuropathy.  I did however suffer with horrendous hot flushes and joint pain due to being put in to surgical menopause but I'm now taking Premarin which has been a life saver.  I started to lose my hair after the first 2-3 treatments but had already brought a few wigs and was wearing them right from the off.  I started to lose my eyelashes about half way thru and wore false lashes - a bit of a nightmare but again manageable.  I lost my eyebrows about a week AFTER I completed my whole treatment!!! I'm now just over 2 1/2 years post treatment and doing well although I do still suffer with some joint pain.

    All in all it is doable, it is hard work but a positive mental attitude definately helps :)  Good luck and keep us posted.

    Michelle xxx

  • His grace
    His grace Member Posts: 23
    thanks

    Thank you Kim for sharing your experience.  You completed it and that is what counts.  I have to talk to manager about having a WFH or more flexible schedule. 

  • His grace
    His grace Member Posts: 23
    thanks

    Thank you Michele.

    You and your friend's experience definitely help me to look out for side effects and prepare me for what lies ahead.

    I am skinny and lost 14 LBs from having to fast for blood work, surgery and being on a liquid diet after surgery.  Maintaing weight during a chemo is critical. 

    Nice to know that you were able to work part time.  I hope to be able to do so.

    18 weeks seem like a long time, but posts like yours, kim's and pam's give me courage to start and get through it. 

  • Noodles1
    Noodles1 Member Posts: 2
    His grace said:

    Thank you Kelly. Your

    Thank you Kelly. Your experience helps me to prepare myself for the battle ahead.  I am glad that your chemo treatment went okay.  I too hope for the same.  Also plan to ask my company to work part time from home.

     

     

    I am on the same schedule as you.

    I too take 18 rounds of Carbo/Taxol weekly and even though I have had side affects, I am doing pretty well. We get a smaller dose because we get it weekly so you should have less side affects then someone getting it every 3 weeks.  I had to stop for 2 weeks because I had gotten strep throat and it decreased my white blood cell count. I have 8 more rounds of the single dose and 3 rounds of the combination Carbo/Taxol left. To date, here are my side affects:

    My nose boogers (sorry so graphic) are bloody but my nose does not bleed.

    I vomited once, for the first time, this Monday.

    Slight nausea started Monday and gone by Friday

    Fatigue maybe twice

    Getting sick with strep throat

    My toes on my left foot is a little numb, but, my Mom dropped a large bottle of pasta sauce on the same foot so not sure if that made it worse....lol. My big toe has always been numb since she did it though.

    All are easily tolerated. The anti nausea pills help out tremendously. I will however be happy when my treatment is over.......lol.

    I have a Broviak catheter and they take my blood weekly from it before chemo.......you are going to LOVE your port, believe me :o

     

     

  • Noodles1
    Noodles1 Member Posts: 2
    His grace said:

    Thank you Kelly. Your

    Thank you Kelly. Your experience helps me to prepare myself for the battle ahead.  I am glad that your chemo treatment went okay.  I too hope for the same.  Also plan to ask my company to work part time from home.

     

     

    I am on the same schedule as you.

    I too take 18 rounds of Carbo/Taxol weekly and even though I have had side affects, I am doing pretty well. We get a smaller dose because we get it weekly so you should have less side affects then someone getting it every 3 weeks.  I had to stop for 2 weeks because I had gotten strep throat and it decreased my white blood cell count. I have 8 more rounds of the single dose and 3 rounds of the combination Carbo/Taxol left. To date, here are my side affects:

    My nose boogers (sorry so graphic) are bloody but my nose does not bleed.

    I vomited once, for the first time, this Monday.

    Slight nausea started Monday and gone by Friday

    Fatigue maybe twice

    Getting sick with strep throat

    My toes on my left foot is a little numb, but, my Mom dropped a large bottle of pasta sauce on the same foot so not sure if that made it worse....lol. My big toe has always been numb since she did it though.

    All are easily tolerated. The anti nausea pills help out tremendously. I will however be happy when my treatment is over.......lol.

    I have a Broviak catheter and they take my blood weekly from it before chemo.......you are going to LOVE your port, believe me :o

     

     

  • His grace
    His grace Member Posts: 23
    Noodles1 said:

    I am on the same schedule as you.

    I too take 18 rounds of Carbo/Taxol weekly and even though I have had side affects, I am doing pretty well. We get a smaller dose because we get it weekly so you should have less side affects then someone getting it every 3 weeks.  I had to stop for 2 weeks because I had gotten strep throat and it decreased my white blood cell count. I have 8 more rounds of the single dose and 3 rounds of the combination Carbo/Taxol left. To date, here are my side affects:

    My nose boogers (sorry so graphic) are bloody but my nose does not bleed.

    I vomited once, for the first time, this Monday.

    Slight nausea started Monday and gone by Friday

    Fatigue maybe twice

    Getting sick with strep throat

    My toes on my left foot is a little numb, but, my Mom dropped a large bottle of pasta sauce on the same foot so not sure if that made it worse....lol. My big toe has always been numb since she did it though.

    All are easily tolerated. The anti nausea pills help out tremendously. I will however be happy when my treatment is over.......lol.

    I have a Broviak catheter and they take my blood weekly from it before chemo.......you are going to LOVE your port, believe me :o

     

     

    thanks

    Thanks for sharing.  Just had my first chemo treatment this wed.  Carbo/ Taxol.  Thankful that I had no adverse reaction when getting the IV.  Don't know about side effects yet.  I am still new so have to see. 

    I am glad that you are doing so well. That is just great.

     

    I am getting used to the port now.  It is better than through your veins/ arm.  Lets keep in touch.  It is so much better when we are not going through this alone. 

     

    Irene

  • seatown
    seatown Member Posts: 261 Member
    Mostly minimal side effects for me . . . .

    Best of luck as your treatment continues.  Just wanted to chime in -- last July, I too started on the 18-wk schedule, 3 wks on & 1 wk off of Carbo/Taxol.  I had minimal side effects and tolerated it well until about Sept.  At that point I had severe neuropathy, not only in hands & feet but in arms & legs too.  My oncologist said he would have expected it would take longer for neuropathy of such severity to occur.  Anyway, my chemo sched was cut back to 2 wks on, 2 wks off thru mid-Dec.  Neuropathy diminished; never did go away entirely.  I don't work for pay, but thru most of this time I was able to continue in my 2-days-a wk volunteer job. In late Dec. had a nearly clear scan & CA 125 number of 23 (from a high of 2800 in July).  At that point surgery was recommended.  (I had had a hysterectomy 4 yrs ago & upon cancer diagnosis last July, they thought the cancer had metastasized extensively in my abdomen so I went straight to chemo.)  Sure enough, the gyn/onc found microscopic cancer sites in my Feb. surgery.  Now back on Carbo/Taxol, plus Avastin, every 3 wks but at a much higher dose for the Carbo/Taxol.  Have had just one chemo session, & I can tell you this higher dose is a lot tougher to take!  Gonna stick with it for now, tho.

    Again, good luck, & keep us all updated.  

  • His grace
    His grace Member Posts: 23
    seatown said:

    Mostly minimal side effects for me . . . .

    Best of luck as your treatment continues.  Just wanted to chime in -- last July, I too started on the 18-wk schedule, 3 wks on & 1 wk off of Carbo/Taxol.  I had minimal side effects and tolerated it well until about Sept.  At that point I had severe neuropathy, not only in hands & feet but in arms & legs too.  My oncologist said he would have expected it would take longer for neuropathy of such severity to occur.  Anyway, my chemo sched was cut back to 2 wks on, 2 wks off thru mid-Dec.  Neuropathy diminished; never did go away entirely.  I don't work for pay, but thru most of this time I was able to continue in my 2-days-a wk volunteer job. In late Dec. had a nearly clear scan & CA 125 number of 23 (from a high of 2800 in July).  At that point surgery was recommended.  (I had had a hysterectomy 4 yrs ago & upon cancer diagnosis last July, they thought the cancer had metastasized extensively in my abdomen so I went straight to chemo.)  Sure enough, the gyn/onc found microscopic cancer sites in my Feb. surgery.  Now back on Carbo/Taxol, plus Avastin, every 3 wks but at a much higher dose for the Carbo/Taxol.  Have had just one chemo session, & I can tell you this higher dose is a lot tougher to take!  Gonna stick with it for now, tho.

    Again, good luck, & keep us all updated.  

    Thanks for your post.  My 18

    Thanks for your post.  My 18 wk schedule is 18 wk straight if my body, spirit and counts allow for it.  Last wk was my first. 

     

    Will definitely keep all of you updated.  All of you have been very encouraging and positive.  Thank you.

  • mopar
    mopar Member Posts: 1,972 Member
    WELCOME TO THE BOARD

    Sorry to hear you need to go through this.  But as you can see by all the responses, this is a great place to get support, ideas, and meet new friends!  Will pray for an easy time on this for you, and that the 18-week regimen will be over before you know it.

    Monika

    Psalm 91 (always brought me comfort during my chemo)

     

  • His grace
    His grace Member Posts: 23
    mopar said:

    WELCOME TO THE BOARD

    Sorry to hear you need to go through this.  But as you can see by all the responses, this is a great place to get support, ideas, and meet new friends!  Will pray for an easy time on this for you, and that the 18-week regimen will be over before you know it.

    Monika

    Psalm 91 (always brought me comfort during my chemo)

     

    Thanks

    Monika

    Thank you for your encouragement and your prayer.  And thank you for sharing Psalm 91. 

    Had my second chemo treatement yesterday.  So far, the support of my friends and family and church have been amazing.  And finding this group/ site has been an extra blessing.  I really admire so many of you, the fighting spirit and the kind words.

    Thanks

     

  • His grace
    His grace Member Posts: 23
    Noodles1 said:

    I am on the same schedule as you.

    I too take 18 rounds of Carbo/Taxol weekly and even though I have had side affects, I am doing pretty well. We get a smaller dose because we get it weekly so you should have less side affects then someone getting it every 3 weeks.  I had to stop for 2 weeks because I had gotten strep throat and it decreased my white blood cell count. I have 8 more rounds of the single dose and 3 rounds of the combination Carbo/Taxol left. To date, here are my side affects:

    My nose boogers (sorry so graphic) are bloody but my nose does not bleed.

    I vomited once, for the first time, this Monday.

    Slight nausea started Monday and gone by Friday

    Fatigue maybe twice

    Getting sick with strep throat

    My toes on my left foot is a little numb, but, my Mom dropped a large bottle of pasta sauce on the same foot so not sure if that made it worse....lol. My big toe has always been numb since she did it though.

    All are easily tolerated. The anti nausea pills help out tremendously. I will however be happy when my treatment is over.......lol.

    I have a Broviak catheter and they take my blood weekly from it before chemo.......you are going to LOVE your port, believe me :o

     

     

    hi

    Had my 3rd chemo treamtent today  My white blood cell count was border line and was told would not be able to get chemo next wk unless I get neupogen shots (3, one each day).  Did you have to deal with this at all.

     

    From your post, it looks like you had no issue with the blood work and was able to get chemo wkly.  Are you on the dense dose regimen.

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    I did chemo dense, which it

    I did chemo dense, which it sounds like what you are doing. I had to eventually start neupogen due to low counts. About every 4-5th week I also got blood. My first 4-8 weeks went pretty smooth, but over time the chemo does accumulate and can affect your cells and then the need for neupogen is necessary to continue chemo. Use your pain medications because it causes your long bones to ache because it is trying to stimulate your bone marrow. Also on the week you do carboplastin use your nausea medicine routinely even if you dont feel nauseated initially. It usually comes by 30 to 40 hours after a carboplastin treatment. Starting with the nausea medicine early and consistently can help keep it under control. Kim

  • Murmist
    Murmist Member Posts: 5
    Also doing chemo dense

    This is my third time at the rodeo. Was diagnosed Nov 2004 with OVCA and did the carbo/platin every three weeks.  Had a recurrance this year and had de-bulking surgery in Jan 13, thsi time I I started out doing the same cocktail.  Carbo/Taxol the first week and taxol only the next two weeks.  I liked this protocol much better as the impact to my body seems to be much less, even with the nuepagen shots, which started the right after the first week.  Dare that immune system! I have been working almost full-time since they released me to drive.  Most days I go to the office, but I do have the ability to work from home, which is a gift.

    My faith, my family, my firends and a good attitude is what carries me through.  I live my life one day at a time and I take all the anti-nausea meds I can get my hands on! It is more the fatigue that gets to me.  Last cycle I had a reaction to the carbo, so this cycle I have been switched to Doxil/Taxol.  It seems like between the two of them they all the possible side-effects covered! But as my CA-125 has been holding steady at 8, I will do these last 9 weeks standing on my head!  Blessing and goodluck to all of you

     

    Lisa

  • wholfmeister
    wholfmeister Member Posts: 315
    Murmist said:

    Also doing chemo dense

    This is my third time at the rodeo. Was diagnosed Nov 2004 with OVCA and did the carbo/platin every three weeks.  Had a recurrance this year and had de-bulking surgery in Jan 13, thsi time I I started out doing the same cocktail.  Carbo/Taxol the first week and taxol only the next two weeks.  I liked this protocol much better as the impact to my body seems to be much less, even with the nuepagen shots, which started the right after the first week.  Dare that immune system! I have been working almost full-time since they released me to drive.  Most days I go to the office, but I do have the ability to work from home, which is a gift.

    My faith, my family, my firends and a good attitude is what carries me through.  I live my life one day at a time and I take all the anti-nausea meds I can get my hands on! It is more the fatigue that gets to me.  Last cycle I had a reaction to the carbo, so this cycle I have been switched to Doxil/Taxol.  It seems like between the two of them they all the possible side-effects covered! But as my CA-125 has been holding steady at 8, I will do these last 9 weeks standing on my head!  Blessing and goodluck to all of you

     

    Lisa

    Eight years!

    You were in remission for 8 years!  I am amazed, inspired, and hopeful! Thanks for sharing your story.  If you need to stand on your head, call me! I'll come hold your feet up!

  • Murmist
    Murmist Member Posts: 5
    3 rd times a charm

    Wholfmeister, I may just take you up on the offer to hold my feet! Yes, I was in remission for many years, however Dec 2011 I was diagnosed with breast cancer and elected to do bi-lateral mastectomy with no reconstruction. The choice was easy for me as I had a long time to think about what I would do. It meant no addtional surgeries and most of all no chemo or radiation. Imagine my surprise when a year later I had another OVCA diagnosis! The platinum based drugs work well for me. I have been so very lucky to have been diagnosed as Stage 1 all three times. The good and bad news with this diagnosis is that I knew what was coming! The biggest change for was having a port put in.  It has made everyhting so much easier.  The blessing for me in all this is that I no longer have the fear that so consumed me 9 years ago.  I know in my heart that I will be successful this time as well and that is how I choose to live my life...as a cancer-free winner.

    Lisa