Side effects of carbo/ taxol - finished treatment #4 and have lots of pain especially feet, legs, arms, hands, etc. Nausea

[chemlcali]

Want to stop.treatment. Afraid to stop and afraid to continue. I do nothing but stay in bed between treatments. Does anyone else feel.this bad? They lowered dose.of taxol 25% but still have all the side effects. I feel.like a failure.

[Hidden]

Firstly; there is no personal achievement or failure in how your body reacts to chemotherapy - so feeling a failure is not appropriate or logical. It seems to me that the medical team treating you have not got the drug levels right for you (we are all different), and that the whole picture needs a reassessment.

Can you get a meeting with your gynae/oncologist to assess whether you need further chemo? I note from your profile that they thought that they had removed all disease, and that the chemo is an insurance, so it might be that, on reflection, they feel the further damage of continuing chemo is greater than the benefits to be gained.

I hope you can get some good, personalised advice.

Best wishes,

Isadora.

[Hidden]

Having had Carbo-taxol (six sessions given every three weeks twice) I personally woudn't give up, I feel they don't give chemo unnecessary, and for me it gave me a good remission (twice) I was in a lot of pain right through (both times) the second line of chemo I was also very sick... I hardly went to bed the whole of the time... but I don't regret going through it either... and if offered it again I would still take it...at the moment I am on chemo Carbo-Caelyx I feel it is a small price to pay for still being here so no regrets...but I can empathise with what you are going through...you only have two more to go so it is worth persevering. sending you my best wishes love x G x

[Elft63]

Ime having carbo / taxol for grade 3agresive ppc .. I tom feel dreadful , I was told it is the taxol that causes the pains so my dose 3 days ago was reduced by 20%.. I have a terrible restless leg syndrome .. And spend lots of time resting or sleeping .. Chemo affects everyone differently .. Please try to stay posative .. You are never alone .. Sending you love n hugs .. Elaine x

[Hidden]

So very sorry you are so miserable. Agree all around here: with Isadora certainly in that its crazy to turn this back on yourself. its a drug, a strong one, and it is the culprit. nothing to do with you. Agree with Gwyn also - and I think you need to hang in there somehow. Nobody adds taxol for a laugh, it is there because it adds to the impact, and is needed - it's just a real bitch for the side effects. It does fade after, quickly, and you are two thirds of the way through. You can make it, I promise. I had the full gamut of reactions, even went into anaphylactic shock the first dose - but the will to overcome the cancer has to, somehow, overcome it. You must keep on at the doc to help manage the individual reactions - especially the pain and nausea, both of which have heavyweight potential remedies they clearly haven't reached the end of yet.

Sorry extends to Elaine too... You def aren't alone, either of you.

Love

Sue xxx

[chemlcali]

THANK YOU TO ALL OF YOU.FOR RESPONDING. I HAVE GREAT NURSES BUT MY DOCTOR LEAVES A LOT TO BE DESIRED. THIS HAS BEEN SUCH A LONG HAUL. I HAVE GOTTEN SO WEAK I CANNOT IMAGINE EVER BEING WELL AGAIN. I OTHERS SAY THEY WORK AND CARRY ON THEIR NORMAL ROUTINE AND I WONDER WHAT IS WRONG WITH ME. I JUST FEEL.SO.SICK, SO WEAK AND EXHAUSTED. I TAKE PROZAC FOR DEPRESSION AND I TRY TO DO EVERYTHING RIGHT BUT IN THE THREE WEEK CYCLE I MAYBE HAVE TWO DAYS WHERE I GET OUT BEFORE IT STARTS ALL OBER AGAIN. WHEN I TOLD THE DOCTOR I AM ALWAYS EXHAUSTED HE SAYS HE HAS NEVER HAD A PATIENT BE TIRED THE ENTIRE TIME. THE NURSES ARE THE ONES.WHO WORRY ABOUT IF THE.DOSAGE IS TOO MUCH FOR ME. THANK YOU FOR YOUR ENCOURAGEMENT.

[marietheresa in reply to chemlcali]

I can't believe your doctor told you he's had no one be tired. I am sick for most of the time between sessions. I think the doctors go into denial. Sort of the way dentist have to ignore the fact that they are causing pain when they are drilling away on your mouth. I love my doctor, but when it comes to adverse events, he leaves it up to the RN's I don't think the doctors are even trained to know how to administer the chemo. I called on doctors for years as a Pharma rep. In pediatric offices the doctors never ever give the kids the shots. If they did the kids would never let them touch them. I think it is the same with the Oncologist. They are there for advise and treatment plans. They have to let the Rn's see all the down and dirty effects of chemo, or they couldn't carry on with their job.

Still you should let the doctor know how bad things are, so he can take appropriate action for you.

Hang in there. Cancer research is moving fast, and if you can hang in there you will be around for the next best treatment. In the mean time we all have to deal with what is available, and although the side effects are very bad, the treatments are effective, so I guess we have to be like the Queen and stay calm and carry on.

My best thoughts are with you. You are not a failure. There are plenty of us who are sick to death after our treatments. You are to alone!

Maria Theres

[Zannah]

Dear Chemical Ali,

As has already been said we are all different. They are horrible treatments but if you can tolerate them the end result is worthwhile . I had the paclitaxol stopped after the 3rd cycle and continued with the carboplatin. This was because the neuropathy was so bad, particularly in my left foot, that the possibility of losing the ability to walk had to be balanced against the long term effects. I was lucky to have a brilliant oncologist. But it is their job to listen to you and to weigh up all the pros and cons of your treatment with you. Never feel a failure or compare yourself to others. How our bodies react is a very individual thing and what is right for one of us isn't necessarily for another. Quality of life counts too. I wish you all the very best for your treatment journey.

Much love and a very sympathetic hug.

Zannah x

[chemlcali in reply to Zannah]

THANKS ZANNAH. THE NEUROPATHY GETS WORSE EVERY DAY. MY FINGERS ARE NUMB AND MY.HANDS TINGLE.BUT THE.PAIN IN MY FEET AND LEGS IS THE WORST. I FIND IT HARD TO SLEEP TOO. FOR SOME REASON I THOUGHT I WOULD BREEZE THRU.THIS. HOW ARROGANT OF ME. I APPRECIATE YOUR SUPPORT.

[ladygooner-uk in reply to chemlcali]

Hi, I had problems with restless legs etc, but I found a wonderful acupuncturist who helped massively. I had sessions weekly and that sorted the problem out, apart from the first couple of days after the chemo.

Hope you find something that works for you

Sue

[drdu in reply to chemlcali]

I hope you get, or have, some good painkillers for the pain - that should help. Your doctor should not leave you in pain. As others have said each person reacts differently to chemo, and you have been unlucky. I wonder if it is the carboplatin that is causing some of the side effects, and whether you should have a slightly lowered dose of this. It is worth discussing these problems with your oncologist.

I was very lucky not to have these problems with carbo and taxol. I am a retired GP (family doctor) with PPC (ovarian cancer variant).

Good luck with everything, and I hope you get some help soon. Try not to stop the chemo as you are getting to the end, but you need more support and discussion with your doctor/oncologist. It could well be that the dose of one of the drugs is too high.

Eileen xx

[chemlcali in reply to drdu]

THANKS EILEEN. GOOD TO HEAR FRO A DOCTOR. I HAVE BEEN MADE TO.FEEL MY EXPECTATIONS ARE TOO.HIGH. I WANT AND TRY TO DO THE.RIGHT THINGS. EACH TREATMENT GET MORE.DIFFICULT. MY.DOCTOR.HAS.NOT.GIVEN ME ANY.PAIN MEDS OR ANYTHING TO HELP WITH THE INSOMNIA. I ALSO HAVE HAD TO VERY BAD GOUTY ARTHRITIS.FLARES DURING TREATMENT. I FEEL LIKE I.WILL.NEVER BE WELL AGAIN. MY QUALITY OF LIFE.IS GONE. THANK YOU FOR YOUR ENCOURAGEMENT.

[drdu in reply to chemlcali]

If you have gouty arthritis as well, then that is even more reason to get painkillers. Your doctor doesn't sound sympathetic at all. I think you should be getting painkillers and a sleeping pill. Steroids can cause insomnia. I am so sorry you are having all this trouble. Is that your GP you are talking about? Is there another partner you can see. It is your GP who should be helping you, and consulting with oncologist if he/she is not sure what to do. Is there not a nurse at the hospital you can contact, who would be able to discuss it with the oncologist, and arrange for painkillers and a sleeping pill. Or a reduced dose of chemo, possibly. I think you should let the hospital know you are having all these problems. You should not suffer in silence.

Good luck, and do persevere as you should get help.

Eileen xx

[Lisa1959 in reply to Zannah]

I have had 2 doses Taxol/ Carboplatin so far...1st time I had the neuropathy really bad starting on 3rd day after treatment and it lasted about 36 hours....with second treatment it started again on day 3 and was worse...felt like my legs were stumps and feet did not belong to me, taking hydrocodone/ ibuprofen for the pain....it was terrible....I can tolerate a lot of pain....at what point did u stop the taxol?

[chemlcali in reply to Lisa1959]

I am sorry to hear you are struggling. after the fourth treatment on day three of it, I was in so much pain I was screaming and crying. they gave me nothing for pain. on that day it was so painful that I could no longer stand on my feet. the doctor stopped treatment and I was wheelchair bound for about eight weeks total. I returned to my onc/gyn/surgeon. she was so kind and promised me I would not be in the wheelchair permanently. she did say I would never be completely okay. I then was scheduled for six weeks of radiation since I could no longer tolerate chemo. we waited four weeks to give my body a chance before beginning. radiation was doable. I was exhausted and still felt very sick and weak. but I kept putting one foot in front of the other. about six weeks.post chemo and in the middle of radiation I found I could tolerate stAnding on my feet again. I will celebrate four years since my diagnosis on April 15, 2017. I am just now beginning to feel human. the neuropathy in my feet bothers me everyday but not every waking moment. I walk with a cane and I do acupuncture to ease the pain. I can no longer work. my chronic anemia caused by treatment is still an issue and I get monthly blood work to monitor me plus B12 shots.

With all that horror behind me, I am grateful to be alive and find something everyday to celebrate life. cancer cost me much, but I have benefited from the personal growth and time to really live life. I do not want to repeat any of it, but I am ALIVE and have had many wonderful moments of life as I endured treatment.

If I could do this for you I would. we are all different and our bodies respond differently. I wish you well and that you can find peace. IT IS H E L L. please make sure your doctor's are aware of your situation. sending you a big, healing hug.

Jane

[jennybutler]

I was on paxi/taxol and carboplatin finished treatment with very good results, because they forgot to give me steroids on 1st one I was in such pain all joints and feet.also so so sick, my lovely Onc. was livid that the steroids not given and gave me expensive anti sickness tablets. After that I nearly sailed through the rest of my treatment, a few days where food tasted disgusting and of course very tired and easily out of breadth try checking that you have the best side effect treatment going. Wishing you well dont give up best wishes and love Jenny xxx

[Hidden]

If I can give any encouragement at all, I notice that you have uterine cancer, the success rate of uterine cancer is much higher than it is for ovarian cancer, (this is the UK figures) but I see that you are living in America so the success rate might even be higher....I wish I could help and feel for you sending you love and best wishes x G x

[angelina]

Hi, You have my sympathy as I was exactly the same as you

with the chemo. I have read many times how people carry on

working or doing a normal routine and it absolutely amazes me.

I was so ill with my chemo and the pain in my legs and feet was torture.

I am lucky that I have a really caring oncologist who tried each

session to adjust my chemo so as to reduce some of the pain and dreadful tiredness. She also prescribed gabapentine tablets

which I had to start taking two days before each chemo session

and then up to a week after chemo. It really helped with the

pain and I did manage to complete all six sessions,

I am so relieved to have managed to complete all my chemo as I really did feel like giving up. It does give you some peace of mind afterwards knowing that you have done all you can to zap

the little blitters and hopefully that is the end of them.

Sending you a big hug (((((x)))) and hang on in there.

Angie xx

[dawnieg]

Dear Jane sorry it is not getting easier for you I too have the restless legs aches and pains and insomnia. I went for my third session on Wednesday and after an hour delay in just could not go through with it. Got up and went home.

[chemlcali in reply to dawnieg]

SORRY TO HEAR YOU.HAD TO LEAVE. I AM SO TORN. I WANT TO COMPLETE ALL SIX SESSIONS BUT AM.SO SICK AND IN.SO MUCH PAIN I CANNOT EVEN IMAGINE WHAT HEALTHY FEELS LIKE ANYMORE. I HOPE YOU.CAN FIND A WAY.TO.CONTINUE. NOT TO BE TOO CRASS BUT SOMETIMES LIFE JUST SUCKS!! I WISH.FOR ALL OF US SMOOTH.SAILING AND FULL REMISSION WITH STRONG HEALTHY BODIES. SENDING YOU BIG HUGS.

JANE

[marn]

So sorry to hear you are having such a tough time.I also had major problems with my 1st dose of Taxol/Carbo and ended up in hospital because of severe dehydration secondary to extreme nausea.They reduced the dose by 25% after that and added Emend the day of chemo then steroids for 2 or 3 days after treatment with stronger antisickness tablets and painkillers for severe leg pain.I also tried to get to accupuncture the week before chemo and the week after.I really believe the combination of all these helped me through.It is now a year later and all side effects have resolved.There is light at the end of the tunnel so fight on.The clinical nurse specialist was also a great help to me.

[buttercup13]

I had all these symptoms too, but I was also on a very high dose of Steroids. I was sure it was the steroids so have reduced steroids down to one every other day. All the symptoms have stopped now!!! So, if on steroids, ask your doctor if you can reduce dose. My very best wishes. xx

[chemlcali in reply to buttercup13]

I HAVE GOUTY ARTHRITIS AND AM ON 20MG PREDNISONE. IT COMPLICATES THINGS. THEY GIVE ME DECADRON ON CHEMO DAY AND WE SUSPEND PREDNISONE FOR THE.FIRST.WEEK. I MAY LOOK INTO.ACUPUNCTURE.

[Whippit]

Dear Jane, I'm really sorry you're getting such painful and depressing side-effects. I think There are many good suggestions to try here. Your oncologist shouldn't be ignoring or trivialising the pain yoi're in. It does make things very difficult when you have an ongoing condition that is painful and is often assiciated with depression. I think I'd be having a sit down and chat with my GP to se if there's something they can do to help.

Don't ever feel alone. There's lots of us here sending you good wishes and virtual hugs. I've heard Taxol only does 5% of tje job so if those side effects are due to taxol, and I rather think they are, you might ask whether the dose can be lowered again.

If you do decide to continue with the current dose just think there are only two more to go so you're nearly there.

Sending love xxx Annie

[chemlcali in reply to Whippit]

THANKS ANNIE. LAST WEEK WAS.HELL. I WAS THE.SICKEST.I HAVE BEEN TO.DATE. I TOLD MY HUSBAND I.FELT LIKE I WAS DYING. NOW TEN DAYS SINCE TREATMENT OVERALL I FEEL.BETTER BUT THE NEUROPATHY IN MY FEET IS CONSTANT. I AM AFRAID TO CONTINIE AND AFRAID TO QUIT. I AM NOT A QUITTER WHICH MAKES THIS HARD. I WILL HAVE A.GOOD TALK WITH THE NURSE PRIOR TO THE NEXT TREATMENT. MY DOCTOR IS IMPOSSIBLE TO TALK TO. HE.IS.SO ARROGANT THAT I REFUSE TO SUBJECT MYSELF TO HIS DEMEANOR AGAIN. ONCE I.FINISH MY TREATMENT CYCLE I WILL.TAKE THIS UP WITH MEMBER SERVICES AND LET MY SURGEON KNOW.THAT I.WOULD NOT.REFER. PATIENTS TO.HIM. I.APPRECIATE YOUR SUPPORT AND THAT OF OTHERS. YOU GET A DIFFERENT PERSPECTIVE FROM FOLKS.THAT HAVE.LIVED THROUGH THIS.

HUGS,

JANE

[5473]

After stage 1 grade 3 breast cancer in 2012, I have lots of joint pain. I had six treatments of carboplation and taxatere and 18 treatments of Herceptin and possibly Perjeta. I say possibly because I am in a blind study. I also had 31 radiation treatments. I have had fluid drawn from one and and cortisone plus physical therapy, but I feel much older than before. I am great flu to be alive, but wish I didn't hurt so much. Before the cancer I walked up to 5 miles regularly, but now I can't do a mile.

[Hidden in reply to 5473]

Hi Just to say,

I realise you are a new member but it is best to check how long ago the thread was posted... for instance this thread was written nine months ago so basically it is out of date because people would have moved on from this treatment.. and some of course might not still be with us..(for obvious reasons) you can check when the post was written by looking at the top right hand corner...it is also better to comment on recent posts because you are more likely to receive a response...

We as a community are trying hard not to revive old posts.. because Ovarian Cancer has a poor prognosis so it is inevitable we have lost members who were our friends.. so it can be upsetting too.

Best wishes love x G x

[marietheresa]

I have stage cancer. It is being treated like Ovarian cancer as the cancer cells were all Uterine, but migrated out of my uterus and into my abdomen and onto my ovaries and bladder.

I have had six session of cargo/taxol. I have gotten sicker with each session as the drugs built up in my system.

I have had had two major allergic reactions the first to the Taxol. The Taxol was fine but it is mixed with Cremophor, a derivative of castor oil. I was then switched to Taxotere which has not caused any problems.

Then last Thursday during my 6th session I had a reaction to the Carbo. I started to itch all over and turn red as a beet. Then I developed severe abdominal cramps, which lasted several days after the session.

You should not feel bad if you are very sick after these sessions. We are being filled with toxic drugs that are trying to kill the cancer cells. I was to only have 6 sessions, but then a Scan showed that the cancer cells had returned within four months of what everyone thought was a very successful surgery. Now I am looking at a year of chemo, not sure exactly what my Doctor has in mind. It all depends on my CA 125 numbers. I started around 900 and at last look was down to about 85. If the trend keeps up he will drop one of the drugs.

I know when you are sick it is hard to believe that you will every have the guts to go back for another session. My sessions have been three weeks apart, and for the most part if I get two or three good days I am lucky. I never knew this would be so hard. But it is.

I have also had very bad taste disturbance. I usually can't even stand the taste of water. Yesterday I was so sick that I thought I was developing an ulcer. All I could do is sleep. I'm better today thanks to Lorazepam. It is the only drug that has helped my nausea. It is addictive, so I know I have to be careful with it, but I am going to ask my doctor if I can start taking it twice a day---12 hours apart.

I just want everyone to know that I have had almost every side effect ad allergic reaction possible, but I don't feel like a failure. It is just my bodies response to the drugs. The important thing is to be honest with your doctor. Don't paint a pretty picture if the picture isn't pretty. Try everything you can for the symptoms and then go with what helps.

If anyone has as bad taste disturbance as I do, I'd like to hear from you. Someone suggested rinsing the mouth with liquid zinc---has anyone tried this?

Hang in there, you just have to believe that somehow this to will pass.

Mairie Theresa

[chemlcali]

I originally posted this nine months ago. It has been a very long nine months but am happy to report I survived. I just got news Friday my recent scan was NED. Yay!! My doctor said I can return to work very part time . . . Six hours a week. I am excited and scared. I still need daily three hour naps, weekly blood monitoring, and weekly acupuncture. I see my gyn/onc/surgeon tomorrow. I am just waiting for disability to approve my part time return.

When I read what I wrote nine months ago it makes me very sad, but at least I did complete four of the six chemos and 25 radiation. I still am very week, suffer severe dizziness, but am upright and doing Pilates classes two times per week. I truly thought chemo was going to kill me and I am convinced it ALMOST did..Please hang in there. I wish you well.

Hugs,

Jane

[topeka]

Had to stop after second dose caused an emergency in the chemo chair. Researched it. Wish I had done so sooner. I am now trying to find if the breathing issue is the delayed taxol that can lead you to be on a vent for life. I was told I am too sensitive to it. The other iofosamide leads to other cancers mostly delayed leukemia. I will find out the percentage asap before last chemo. I think I will do better with my 4 rounds internal radiation and though I was told 85% recovery I now wonder about other cancers from chemo. Most of the patients I see are there due to new cancers from chemo. Very discouraging.

[chemlcali]

Hello Topeka,

My road has been extremely rocky. My surgeon informed me after my last scan that I have a tremendous amount of radiation damage. She says it may be permanent. The neuropathy is still debilitating but I now do acupuncture. It relieves some of my pain but not all. Chemo ruined my life and I am trying to accept my new normal. Fatigue is a daily challenge. I I am young, 58, but not sure if I knew what I know today I would do chemo. But with that said, I am alive and luckily have not had to face death yet. I try to take one day at a time and quit having expectations. I wish you well and everyone on thks site blessings. We all deserve better.

Hugs,

Jane

[ingrid48]

Ask the doctor about. Neurontin a drug usef.for chemo induced neuropathy. I use it...I can walk everyday now...

[Donnasweet]

I have pains in my legs and tingling all over I just had my first treatment . Feeling weak and it hurts when I walk . This happened 2 days after chemo .

[DeidreB in reply to Donnasweet]

I didn't start having leg and foot pain till after 2nd round of Taxol and Carbo (a week ago) - even though I am on extended release morphine (for the abdominal pain even before treatment started - became horrible after 1st round). I see a pain specialist because my oncologist says my pain is complex.

So thankful he got my pain under control. I could not have coped with the severe pain for much longer. I routinely take anti-nausea medication the first few days after the infusion - to prevent, not to wait till the nausea starts. Only vomiting so far after 1st infusion when I was taking pills. I found that compazine works better for me than the zofran.

The leg and foot pain is a bummer - I can only imagine what it would be like without the morphine. I do not skip doses and take every 12 hours. My lips, mouth and throat are sensitive but no sores.

I have ovarian like cancer of the omentum - treated like ovarian for the chemo. I am lucky to have a friend who is a 16 year survivor - it gives me hope! My CA 125 had a big drop after the 1st infusion, another reason to hope.

I tell myself the pain is the medicine killing cancer - it helps.

Wishing you the very best!

[chemlcali]

Donnasweet sorry to hear your troubles. I am more than three years out. I still have nerve pain in my feet. I walk with a cane but I am alive. I no longer work. My employer kicked me to the curb after a year of part time work. Fatigue is still part of my daily life. Just did the grocery shopping to cook Christmas dinner for eight tomorrow. I shopped, loaded it in car, drove home, unloaded, put away and now need to relax for a bit. That is my life. I am alive and cancer free. I turn 61 next month but am grateful for each day. Glad to say treatment trauma is now a distant memory. I wish you all the best.

Jane