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taxol /carbo

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

I just had my 3rd round last Tuesday.  I met with the dr before chemo.  He told me at my stage 1a miscroscopic SC with no evidence from my hysterectomy biopsy, I am in my own class.  He had recommended 3/4 chemo treatents.  If I had symptoms of neuropathy, he would stop at treatment 3.

My last treatments I have had muscle, bone aches days after treatment.  This last one is was much stronger.  Also nerve pain.  Felt like someone was sticking my body with a needle.  I was reluctant to take any pain meds because I am so pumped up on all the meds they give you with treatment...especially the steroids and nausea pills.  They work, but I feel like I am in a fog.  Has anyone had the nerve pain after treatment?  I am considering stopping at treatment 3 and at the same time worried I'm playing with my life with this type of cancer to come back later.

Just would appreciate any feedback, especially anyone with stage 1a.

Thank you.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

I had stage 1a and did 6 rounds of carbo/taxol and 5 brachy treatments. That was in 2015. They may have come up with different guidelines since then. I had a mixed serous with adeno (I think).  Cancer was in the polyp that was removed during the D&C and then I had a tiny tumor in my uterine wall at the time of my hysterectomy. So, mine was not microscopic. It is such a hard call! But if you trust your doctor I would go with whatever he is suggesting for you. They say that most of the time a recurrence hits the vaginal cuff first. So, as long as you get your checkups as scheduled, you should be OK.  Are they going to do brachy on you?

I had muscle and bone pain with each treatment. And, also the nerve pain you are describing. I still have a small amount of neuropathy left in my fingers and toes and once in a while in my feet. It isn't bad though. So, most of my side effects are gone now.

Please come back and let us know what you decide. (there are studies out there that say survellance only is acceptable for stage 1a)

I hope this helps.

Love and Hugs,

Cindi

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Hi Cindi

Thank you for for your response.  The only treatment is 4 rounds of chemo.  I was just a little more concerned this time with more of the nerve pain.  I went to work today and made it through.  My next round is scheduled Tues week of Thanksgiving.  I can let the dr know when I go.

Appreciate your help with this, hope all your lingering side effects subside.

Hugs,

Sandra

EZLiving66's picture
EZLiving66
Posts: 1370
Joined: Oct 2015

I had three rounds of chemo the last one being in December of 2015 and I still suffer from nerve pain.  It is really bad in my feet where it feels like someone is sticking a large needle into them or they feel like they are on fire.  My feet for the most part are numb so how I can have this kind of awful pain in them is beyond me.  It usually occurs at night and wakes me up.  I take Percoset and I am back on gabapentin on really bad nights.  Otherwise I take extra strength Tylenol.  I also still have numbness in two of my fingers.  It was in all ten digits but now only my right index finger and thumb are numb.  My doctor said if the neuropathy and numbness are not gone by now it is likely I will have them my whole life.

It is certainly up to you to continue the chemo but I just wanted to share that sometimes the damage it causes doesn't go away.  I was the poster girl for chemo side effects and still suffer eye and stomach damage.

Take care and I hope you are one of the majority of lucky ones who recover from the neuropathy.

Love,

Eldri

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Thank you Eldri for your reply. I am sorry to hear you are still experiencing side effects.  Before I have my 4th treatment I will let the dr know and see what he advises.

Hugs,

Sandra

barnyardgal
Posts: 231
Joined: Oct 2017

One of my friends is a two time breast cancer survivor. She still has neuropathy 5 years later. Recently she did acupuncture in her hands and feet. It didn't help her hands but her feet are fine now.

My doctor wants me to start acupuncture during chemo to help prevent or reduce the neuropathy.

CheeseQueen57's picture
CheeseQueen57
Posts: 837
Joined: Feb 2016

I’m convinced that acupuncture during chemo limited my neuropathy. In fact, I’m going back tomorrow to see if she can remedy the very little numbness I still have in my toes. Unfortunately, I had to pay for it myself but it was well worth it. I had my doc refer me to the pain center at the local hospital. My acupuncturist is an anethesiologist. Many insurance companies will cover it for chemo related nausea. 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

and the balls of my feet. It has not changed in 3 years and 10 months since chemo ended. I guess if this is the worse side effect I can live with it. I have no choice!

 

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Thank you for all sharing your experiences during chemo.  I appreciate all your support.  

Sending hugs to all of you and always in my thoughts and prayers.

Sandra

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I took Glutamine supplements and I believe they helped me. I have 3 permanently-numb toes but nothing worse, thank god.

oldbeauty
Posts: 199
Joined: May 2012

I was diagnosed Stage IC Grade 2 Adenocarcinoma in 2005.  I had a recurrence in 2012 that was treated with radiation to para aortic lymph node and high dose progesterone that kept me in remission until 2016 when I was diagnosed with a recurrence in my lungs.  I ended up with 12 rounds of chemo lasting most of this year. I had liver reaction to the drugs so I had treatments where only one drug was administered but I ended the year with six consectutive carbo/taxol treatments.  The final two were with Taxotere because of neuropathy in my hands and feet.  I did have 8 acupuncture treatments towards the end and now I am taking Lyrica (75 mg 3x per day).  Whether because of time away from chemo, the acupuncture or the Lyrica, the disabling pain in my feet is resolved but they still are numb and tingling.  It prevents me from walking as much as I'd like and since I am retired there is not an issue of having to be on my feet all day.  My fingertips also are numb but that is not a problem (I do drop things that are very light because I can't feel them but I just have to be more mindful of what I'm doing).  I am going to wean myself off the Lyrica when I see my doctor in December to assess what my true situation is and then I'll decide what to do.  Lyrica is the successor drug to Neurotin (gabapentin) and your doctor has to appeal to the pharmacy benefit folks to get you on it.  My doctor said it is a better drug because it is immediately purposed by the body where Neurotin needs some other process to function before the drug can be used by the body.  It's alot more expensive ($270 for 3 month supply).  Anyway, it's a brain drug that blocks the unnecessary pain messages sent by the feet, is the way the doctor explained it to me.  I'd rather not be on a brain drug so that's why I'll start experimenting next month.  I would say the neuropathy now is somewhat disabling but I am adjusting.  I am still hopeful it will resolve more.  My point is two-fold.  I was told I was cured after initial treatment and here I am on my 3rd recurrence so you never know.  And neuropathy can be lingering.  Taxotere is the alternative to taxol when the neuropathy is assessed at a Level 3 (whaterver that is).  Taxotere, however, (as Double Whammy will tell you) has a risk of the hair loss being permanent.  No easy choices here, you just have to go with what seems right for you.  Other than the neuropathy I'm in pretty good shape; this grueling year has seemed to have knocked me back into remission.  Best wishes, Sandra, as you work with your doctor to give you the best treatment you can tolerate.  Oldbeauty

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Thank you Oldbeauty for your response.  I called my dr's office and leaving it at 3 treatments.  I will see him in December.  I am entering my 3rd week with most of the nerve pain gone.  I can still feel a little of the tingling in my feet.

So sorry for what you have had to go through. 

Sandra 

EZLiving66's picture
EZLiving66
Posts: 1370
Joined: Oct 2015

My three chemo were Carboplatin and Taxotere. I can't imagine how bad my neuropathy would be if I had Taxol instead of Taxotere. I am missing my left eyebrow and part of my eyelashes. My hair came in a lot thinner but at least it came back. Lots of things to consider. 

Love, 

Eldri 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

My pharmacologist had me take L-Glutamine supplements (like derMaus)...3 X per day (I got pills on Amazon but you can also get powder that is flavorless)

she also had me take OMega 3 (3Xday) and B6 (1Xday)

I have no neuropathy and I did 6 rounds of taxol/carboplatin

another friend of mine with ovarian cancer did the same supplements a few years ago and she has no neuropathy either...

worth a shot...

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Thank you for sharing your experiene.

Sandra

dgrdalton's picture
dgrdalton
Posts: 73
Joined: Jun 2017

I had chemo #1 on 10/26. I had pretty bad joint and muscle pain for 3 days and ended up taking a couple of 1/2 doses of Percocet for 2 days. My fingers on both hands are tingly and numbish. I read an article that said if you tell you oncologist before the next treatment they might lower the % of the drug. I will try that and see what happens. I am UPSC stage 1A Grade 3. She has recommended 3 chemo and 6 brachytherapy. Talking with your doctor about it sounds like a good plan.

Donna

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Thank you for sharing.   I am going with the 3.  I'll see my dr. in December.

I hope you do well wit the rest of your treatments.

Sandra

MAbound
Posts: 907
Joined: Jun 2016

There are a number of things Dr.s can do help alleviate side effects of chemo. They can switch to another drug like from taxol to taxotere (I had that done for me after severe neuropathy hit with the 1st infusion), they can infuse the drug over a longer period of time, or reduce the dosage and increase the frequency of infusions. Other helpful things are B12 shots and supplements like glutamine, hypothermia (ice slippers & mittens), drugs like gabapentin for pain or acupuncture. 

We are all individuals and thus react differently to chemo. Eldri seemed to get the worst of it, others have no trouble, but I think the majority get neuropathy to some greater or lesser degree. How long it lasts is also an individual thing. Some have it forever and for others it lessens over time. The scary thing is not knowing into which group you'll end up. It sounds like what you are experiencing is a gradual building up of the neurapthy symptoms as chemo effects are cumulative. You can continue with the chemo if it will help you to know you went along with the full recommendation for treatment. You can try taking glutamine supplements (it has a protective effect on the myelin sheath that covers nerves) a day or two before and a couple of days after chemo. I can't remember the dosage, though. Hypothermia slippers really help, too, but they'd be awfully expensive to not have started using right from the first treatment. I got B12 shots during chemo and continue to take 3000 mcg. sublingually and my neuropathy has lessened considerably since treatment. 

It's a tough decision you have to make. Frontline treatment is one's best shot for a cure, so I'm of the opinion that it's best to throw the kitchen sink at it, but I'm not in your shoes to be making that decision for you. Neuropathy is not easy to live with if it gets bad enough, so you have to weigh quality of life vs. peace of mind. So sorry that there is no easy answer here.

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Thank you for your reply.  I'm  going with 3.  It is a tough decision...a lot to think 

about.  There is no easy answer.  

My best to you.

Sandra

cheerful
Posts: 246
Joined: Apr 2011

Dear Hopeful 56: 

I had Stage 1 of UPSC in February of 2011.  I had 6 rounds of carbo/taxol and did not have neuropathy as I did NOT have my lymph nodes removed during surgery nor did I have my omentum removed either. I did have a hysterectomy consisting of my ovaries, fallopian tubes, and cervix being removed during the hysterectomy.  The surgery was 3 1/2 hours long. My regular gynecologist who did my surgery at the time did not know it was cancer until after the surgery from the pathology report.  I surmised that it was cancer and mentioned this to him in August of 2010 and I was so right since I had bleeding that lasted for 6 months.  I did have some tests done before my surgery as they tried an endometrial biopsy and another test, but they were unsuccessful since I had a large fibroid blocking that area. So I decided on the surgery. After my surgery and the pathology report came back, I was diagnosed with UPSC - stage 1 from an oncologist my gyn introduced me to after I was diagnosed with cancer which was in the hospital as I spent 2 1/2 days in the hospital.  My oncologist said since I did not have my lymph nodes removed it was technically Stage 1 as the cancer was a polyp of 5 centimeters long. My oncologist then (he is now retired) mentioned for me to go through very aggressive chemo treatments of 6 treatments of the carboplatin and taxol and 3 rounds of brachytherapy which I had done. I started chemo in April of 2011 and finished the chemo the end of August of 2011. I started brachytherapy towards the end of Sept. and finished in mid October of 2011.  For the last 5 1/2 years, I remained cancer free until October of 2016 (last year) I had a reoccurrence as a very small spot was found on my pelvic area and spleen from a Pet Scan I had done last year on the recommendation of my oncologist that since retired.  My new oncologist who just had joined the practice, recommended I get chemo of carboplatin, taxol, doxcil and avacin.  Anyway, my number last August of 2016 was 134 and by January of 2017 it was cut in less than half down in the 60s range. It was reduced by more than half.  I started Tamoxifen in December of 2016 and took it for about a week and it burned my eyes so I stopped the medication.  So I ended up not having to have chemo done since my CA number remained at 60 and each month thereafter up until May of this year it was between 60 and 40s range.  In May it went to a normal number of 26 and then in August it went down to 19 and I just had blood work done earlier this month (Nov.) and it was at 17.  So I have been at the normal range for this cancer since May of 2017 - 6 months. I also had a Pet Scan done in mid October (2017) and the Pet Scan showed NO evidence of cancer or even a trace of it. My oncologist is "Baffled" to say the least, however, my immune system kicked this cancer right out of me as I lost a lot of weight between 70 to 80 lbs. in 2015 and I feel much stronger and healthier. I am at a more normal range now for my weight I weigh close to 150 lbs.  I have since gained back maybe 20 of the lbs. since 2015. I also had my gallbladder removed in early 2016.  Anyway, I am now extremely grateful and very thankful and happy that the cancer is gone from me and I am hoping to live a more normal life. This past year for me has been very "nerve wracking" to say the least with all the doctor appts I have had monthly and blood work done every month.  I also had a port in just about a year ago in November of 2016 and I know my oncologist's office said if after a year your cancer is gone you can get the port removed so I probably will be getting the port removed in the next couple of months hopefully as I want to ask my doctor about this. I go back and see my oncologist this week and will see where I go from here with the cancer results I have had. He probably will see me I am thinking either once or twice a year just to check out how I am doing regarding this cancer.  Obviously, I wil be checked forthe rest of my life regarding the cancer I have had. I am hoping to continue to remain with No Evidence of Disease and wil hope for the best in the future.

I wish you the best in your decision to have the 3 treatments of carboplatin and taxol and I wish you a lot of luck as well.

After my 5th treatment back in August of 2011, I did need a blood transfusion and a Neulasta shot as my platelets at that time were really low.  Anyway, I am very glad I did have all of the treatments that my oncologist recommended back then.  I would go back and see your oncologist whenever he wants you to return. Only he knows what's best for you other than yourself for treatments and expertise in the area of our rare and aggressive cancer.  My oncologist the one that retired is extremely knowledgable about UPSC as he has over 30 years of experience. Sadly, my new oncologist mentioned to me that anyone that was diagnosed with Stage 1 back in the 1980s have all since passed away since the treatments then were not what they were now I really don't know even if chemo was given back in the 80s when our cancer came in existence. So the medical field for sure has come a very long way since then and it still is going really strong. Obviously now there are more new drugs they can use even when I had the chemo over 6 years ago.  

Cheerful

a/k/a Jane

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Thank you Jane.  I appreciate you sharing.  I see my dr right before Christmas.  

Hope you are NED forever.

Hugs

Sandra

barnyardgal
Posts: 231
Joined: Oct 2017

Just got back from a checkup with my doctor. She recommended starting l-glutamine and alpha illogic acid as well as making sure I have omega 3 daily in my diet. And I start acupuncture a couple of days after chemo. 

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Wisiing you the best.

Sandra

Anne0803's picture
Anne0803
Posts: 15
Joined: Nov 2017

December 20, 2016 – I started my 1st Chemotherapy treatment (Taxol/Carboplatin). The unimaginable pain started on the 3rd day after treatment.  It was the most painful experience I ever had.  My whole body is in pain, joints were aching.  It lasted for 2 days.  During those days I couldn’t eat.  I tried my best to at least eat a piece of toast with butter, made some smoothies with chocolate drink (I mixed different berries or fruits).  Probably after 6 or 7th day, I’m back to normal appetite.  Oh boy I am soooo hungry.  I wake up in the middle of the night and eat!!!! (NOTE: I drink prune juice too before and after treatment because chemo drugs make you constipated too). I hardly took my nausea pills.  I am very thankful that I don’t have any other side effects.

1st treatment – body pain and joint aching 100%

2nd treatment - body pain and joint aching 75%

3rd treatment - body pain and joint aching 40% 

4th treatment - body pain and joint aching – NONE 

My treatment was every 3 weeks. My blood platelets started to go down on my 3rd treatment.  My 4th treatment was delayed for a week so as my 5th and 6th.

My last treatment ended up on April 2017.  My doctor asks me if I want blood transfusion because my blood platelets was so low.  I said I still feel fine and If I needed it I will tell him. Oh my doctor gave me higher dosage of chemo drug because my kidney can tolerate it.

I recovered well with my Chemotherapy treatment.  I never limit my diet.  I eat anything I wanted to give my body enough strength to go through the treatment.  BTW my hair never stops growing throughout the treatment, but I need to shave it everyday otherwise it will fall off then grow again.  So, I decided to start growing my hair on June 2017. The only side effect I noticed that my finger tips were numbed and my knees are weaker. I also had 25 rounds of Radiation - side effect Diarrhea.  I avoid eating food that triggers Diarrhea. And 2 weeks after the last treatment.... no diarrhea... <3

As of today 11.29.2017 everything is back to normal.  I had my CA-125  and CT Scan last September everything is clear Kiss.

@Hopeful56 - Hang in there! Chemo drugs side effects is unavoidable.  I practised drinking a LOT of water and somewhat helped having less side effects.  I know it is not easy to drink water few days after the treatment but I just embraced hydrating myself. 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

Anne0803, Welcome to our board. And, congrats on finishing frontline treatment. I hope you dance with NED forever.

Thanks for sharing your experience. You never know who it may help along the way.

Love and Hugs,

Cindi

Anne0803's picture
Anne0803
Posts: 15
Joined: Nov 2017

I know how it feels when I just started my treatments, I'm thirsty for more informations.  And first hand experiences are really helpful, though every individual body reacts differently with the treatments.

Cheers,

barnyardgal
Posts: 231
Joined: Oct 2017

Thank you for the info. I had my first taxol/carbo treatment two weeks ago, but I reacted to the Taxol and they couldn't finish that drug. They are trying desensitization of the Taxol next week, but if that doesn't work I will be switched to doxil. I didn't have pain the first time since I didn't get much Taxol, but what did you find helped the pain that started a few days after.treatment? 

Anne0803's picture
Anne0803
Posts: 15
Joined: Nov 2017

Based on my experience and what my doctor said, the pain is the side effect of the chemo drug - no pain meds will work.  Our body reacts differently in every chemo drugs they give to us.  It is also how are physical health status is, if we don't have other health issues.  I never been hospitalize in my 41 years and this is my first major health issue.  I make sure after few days of pain, I eat during recovery time before the next treatment.  I never restrict my diet, I eat whatever taste good for my palate.  Most of the time I take some smoothies (chocolate energy drink mix with fruits like blueberries)

What I found helpful during my treatment was I hydrate my self, I literaly drank a lot of water. 

1st treatment – body pain and joint aching 100%

2nd treatment - body pain and joint aching 75%

3rd treatment - body pain and joint aching 40%

 

4th treatment - body pain and joint aching – NONE 

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