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Side effects after completing Taxol/Carbo treatment

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi
I've just joined the site this evening. I completed my 18 weeks of Taxol/Carbo treatment 5 weeks ago today. I did very well on the chemo with relatively few side effects apart from weight gain (arghhhh) and hair loss. Anyway about 2-3 weeks after completing the treatment i started to get aching muscles and painful joints especially knees and fingers. The only way i can describe the feeling is like having done a huge workout at the gym after not going to the gym for 6 months - that's what the muscle pain feels like, the joint pain feels like what i suppose arthritis must feel like, it's painful to bend my knees and generally move around. I didn't have any of these symptoms prior to chemo and i'm only 46 so i don't think it's age related arthritis!!! I have spoken to the oncology nurse and she says that these side effects can happen but aren't that common. Has anyone else experienced this after completing their treatment. Also nearly all my eyebrows and eyelashes have fallen out since i've finished the treatment NOT whilst i was undergoing it - weird!!!

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I too have been on the same chemo as you and are on it at the moment. I haven't experienced your joint pains but I do have the muscle pains but that is the week after each treatment. I suppose though that we are all different and the chemo affects us all in different ways.

I know just what you mean about the weight gain - that is partly the effects of the steriods and the increased appetite. Do you notice a "round moon face?" and have you also noticed like a fatty lump at the top of your spine? These are all due to steriods and are temporary. I gained about 1 1/2 stone and it does come off eventually.

As for the eye lashes and brows - I've not heard of that. I bet it was nice to keep them sduring your treatment. I am sure they will soon come back. I noticed mine coming back very quickly after.

Cheers Tina x

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Thanks for your reply.
The weight gain thing is horrible but thankfully my 'moon face' or rather my 'moon double chin!!' has now gone but i do have the hump thing on the top of my spine, i noticed this yesterday and also i've noticed that my calves have got bigger - v bizarre!! Hopefully all will go very soon and hopefully eyelashes and eyebrows will be back soon too. I'm off for an aromatherapy massage soon and then maybe a bit of retail therapy!
Take care.
Mx

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

Yep, I've got those same sore joints. I think it's due to the Femara I'm taking for maintenance, but it could be from the Carbo/Taxol. I finished treatment at the end of Sept. I had a really great massage last week that helped a lot with the soreness. I'm considering acupuncture if it gets too bad. My onc suggested more calcium.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi
I'm off to have an aromatherapy massage in a couple of hours so i'll let you know how i get on.
Mx

Sandy10's picture
Sandy10
Posts: 82
Joined: Sep 2010

Hello!! and welcome to the board. Sorry we all had to meet under such crappy circumstances.
I also had the Carbo/Taxol treatment. IV as well as IP. I finished my chemo 6 months ago and am still having the aches and joint pains. I also have neuropathy in my hands and feet. My onc says it's from the chemo and it will go away but it takes a long time. In the mean time, I am on Neurontin for the neuropathy and percocet for the joint pain and muscle pain. I also found that a nice hot bubble bath helps a lot. I have noticed that I am very sensitive to the cold now as well. If I get cold, the pains get worse. So i guess it's a good thing i live in Florida huh? My pain is worse in the morning when I first get up. It takes a little while for my joints to "losen up." If this is all I have to deal with to stay NED, i will gladly take it!!! :) Are you on any meds for it? if not you should ask your doctor for something. it will make it easier for you. When I'm hurting, i tend to sit on the couch and not want to do anything. When I take the meds, I don't hurt as bad and can do whatever I want. Chemo does affect everyone differently. I hope you feel better and I hope this helps. ((((HUGS))))

Sandy

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi Sandy thanks for your reply. I'm not on any medication for the pain although i ocassionaly take neurofen which sort of helps but to be honest i really don't want to be on long term medication - i've had enough of it and i'm trying just to get on with life,although i suppose if this goes on for much longer i will have to consider this! Fortunately the cold doesn't affect me which is lucky as i live in England but i've noticed that tiredness does as i feel much worse when i'm tired. I'm just hoping that i will get back to something like i used to be which was active, fit and fun. Hugs back to you. Mx

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

My last Cisplatin/Taxol infusion was 9/16 and I have aches and pains. I wake up a lot during the night because my hip joints hurt and I must constantly turn from side to side. Also when I am sitting it takes several steps for me to stop limping when I get up because my legs hurt. I also have mild neuropathy in my feet and hands. Last night a bone on the right side of my back (scapula?) was aching. But as people tell me nowadays when I complain about things, "at least you're still hear."

Karen

GowNY's picture
GowNY
Posts: 15
Joined: Jan 2011

It should slowly start getting better and better. I got neuropathy in my feet right before my last treatment and lasted for a few months after chemo. My hands didn't bother me at all but seem to now a little. I lost my eyelashes and eyebrows midway through chemo. Mine started growing back exactly one month after my last treatment. My hair is growing in very curly now. I used to have wavy hair. I finished chemo last April- went 6 times every 3 weeks.

Losing my hair was the worst part of chemo for me besides getting the IV's. Looking back I should have gotten the port but I was scared to at the time. Each time going to chemo was horrible trying to get a vein for the IV to work. Now when I need an IV for my petscans or what not I have tons of anxiety beforehand and start crying about 5 minutes before the nurse puts the IV in - so embarrassing!

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I had a lot of joint pain following my chemo, which ended just about a year ago. My knees screamed when I stood up from sitting. I was tested for thyroid antibodies (TPO) and it came back high. This is not the typical thyroid test, but tests for antibodies. Turns out I have Hashimoto's which is an autoimmune condition where your body attacks your thyroid. Don't know whether I had it before chemo. Don't know whether chemo caused it. Don't know if it could be a common side effect. My naturopath put me on some herbs to address the autoimmune condition and wihtin a week I felt great, still do.

It is very common for you to lose your eyebrows and eyelashes late in the chemo process. It took about 11 months for mine to grow back completely.

Good luck

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

I didn't lose my eyebrows. I had my last chemo on 9/16/10. My eyelashes came in pretty fast. My hair is finally grown out but of course is very short. It seems to be thicker but I cannot tell if it is curly. My hair is normally straight as a stick. I also lost my moon face but am fighting the battle of the bulge. I have fought it my whole life but had lost a lot of weight prior to my dianosis (some by choice and some due to personal drama) so I hate that I have gained some back. I am trying to eat better but now that I feel good, I tend to eat what I want instead of eating for my health. I'll keep trying but it sure is hard.

Karen

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi Karen
My eyebrows and lashes are growing back at a mad rate in fact i think i'm going to have to get my eyebrows shaped shortly!! I weighed myself the other day and was so UPSET i am nearly 2 stone (don't know what that is in pounds) heavier than i was before treatment. I think if i ate NOTHING for the next week i would still not be any thinner - grrrrrrrrrrrrrrrrrr. Anyway as everyone keeps on telling me - you look lovely, you don't look big, your hair looks lovely short blah blah blah. That's all well and good but it's not how i FEEL and i know it's not true!!!!!
Bright Blessings.
Michelle x

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

I finished my chemo on 9/9, and my eyelashes came in first, then my eyebrows and hair. I also hear that my hair looks great. I used to wear it short, and I'm keeping it short, but still need a little more length. Right after the chemo, I was ravenous! I think my body had been starved after surgery and during chemo, and it wanted to be FED. After about a month, and some weight gain, I started feeling normal again, and was able to take off some of the weight. I agree that the important thing is how you feel, and I really enjoyed being almost as thin as I was in my 20's. Give it some time before you try to lose the weight, so your body doesn't feel starved anymore.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Thanks for your reply.
I have an underactive thyroid which i've had for about 18 years and i am taking 200 mcg of Thyroxine daily. I had an overactive thyroid from the age of 7-15 and have been told that both of these conditions (in my case) are caused by an autoimmune problem. I read somewhere that there are quite a few cases of women who have had their thyroid go haywire and are then diagnosed with ovca!!!!! My thyroid went 'beserk' in 2009 and i was under the care of an Endocrinologist who finally sorted me out, about 8 months later i was diagnosed with ovca. I wonder how many of us on this site have thyroid problems.
Bright blessings.
Michelle x

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Somewhere there is a thread about Thyroid issues and OVCA. You might try searching "thyroid" and see what comes up.

Carlene

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

I didn't have muscle or joint pain, and I don't know if this will help, but it can't hurt to try. There was just a small article in the NY Times about ginger. Research found that as little as 2 grams of ginger (a thin slice about 1" wide and 2" long,) reduced muscle soreness by 25% the following day. I took it the day after walking 1.5 miles, which made my quads very sore, and had absolutely no soreness the next day. Last week, I was skiing with my husband, and we wanted to eat some ginger, but couldn't find the fresh roots, so I bought candied ginger, and we ate that, also with a good result. I highly recommend the candied, it's yummy, and easy to eat enough.

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

suggested I drink ginger tea to help with the effects of the chemo. I never tried it.

My hair is still really short but it feels thicker and seems to have a curve to it. My normal hair as I have mentioned is super straight. I kind of like this. I usually wear my hair short and spiky anyway and it is there now but a little shorter. I want to let it grow just a little so I can also wear it flat if I choose. The way my hair grows I have a fauxhawk but I think it will lay down if it's a little longer. But I would be crazy to let it grow much more because it is so easy to deal with.

Will my hair go back to normal after a while? I don't want it to.

Karen

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

I've heard that hair does ultimately go back to normal. I have curly hair, but it came in straight. Now that it's a little longer, it does curl when damp, so I think it's going to be just the same. I was kind of hoping the gray would be gone :)

pkozak
Posts: 1
Joined: Feb 2011

I am so glad I came across this site. I finished my treatments mid December 2010, On Dec. 27th I got a clean bill of health from Ovarian cancer stage 3c. I am currently receiving Avastin monthly for a year. My bones and joints ache sooo bad. If I sit too long, it takes about ten steps before I stop limping and can stand up straight, If I stand up for too long, my legs begin to hurt. I try to keep moving, but if I walk too much my legs really begin to hurt. I have a lot of pain in my hips, lower back, shoulders, back, and thighs. I also have neuropathy in my hands and feet, which I am patiently waiting to leave me.
Hot tubs, and hot baths seem to help for a little while. I try to stay active, just returned to the gym, but very gently. I just started taking Glucosamine Complex with Chondroitin & MSM. It does actually seem to help a little bit (I just started a day ago). I feel like I am 90 (only 48) and my bones, joints, and muscles are scrunching up. So very frustrating because other than this pain, I feel good.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi and unfortunately welcome!
I so know what you mean about feeling 90 I'm 46 and feel exactly the same. Luckily I haven't had neuropathy but nearly every single joint in my body hurts and like you when i've sat down for too long it's really uncomfortable when i get up. I also take Glucosamine and Chondroitin and cod liver oil but to be honest haven't noticed any difference and i've been on them now for about 3 weeks. I'm also taking Naproxen (anti-inflamatory) which does take the edge off but it is just soooooo uncomforatable and draining to be in constant discomfort. BUT hopefully all will soon start to get better. Please keep me updated as to how you're getting on.
M x

joan60's picture
joan60
Posts: 90
Joined: Sep 2010

After I finished chemo the first time I felt good until one month later when body aches, nerothaphy, weak legs kicked in. My Dr. put me on Neurontin which helped. It would take my upper body strength to push me up out of a chair and several steps to get moving. If I rode in a car for mare than 20 minutes I was stiff, my husband jokingly said if he walks any slower he will fall over. The good news it will get better. I've been 6 months out and very few body aches and have gone back to the gym. I just started carbo/taxol and am hoping I don't have the pains and weakness as before. My eyelashes and eyebrows fell out after chemo, too. They also are back so they do grow back fast.

Stay healthy and I hope your pain goes away soon.
Joan

lori26
Posts: 1
Joined: Feb 2011

i finished cistplatin/carbo/taxol in august. my hair, head, eyebrows, etc began to grow back before the last treatment. and then lost a lot of eyelashes in maybe october. heard it was normal, but still very scary. for me the worst part of this all was losing my hair. and for the last couple of months i have had horrible neuropathy in my fingers. they keep me up at night with throbbing pain. my doc has put me on 900 mgs of neurotin, but so far it really doesn't seem to help.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

It's a real bummer isn't it! You get thru chemo THEN suffer these awful effects afterwards!!!! I'm really struggling at the moment, the joint pains are getting worse and coupled with the hot flushes my sleep is terrible. It's really impacting on my life and making me feel really miserable :(
M x

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

I didn't have pain in my fingers, though they got superficially numb. I did have terrible stabbing pains in my feet after my second carbo/taxol treatment. My NP told me to take 50mg B6 and 250mg Magnesium daily, and that helped right away. You could ask your doctor or NP if it's OK for you to try it. I asked for Neurontin as a sleep aid (long story about that,) and was refused. Recently I googled it and saw one report that said it isn't particularly effective for treating chemo induced peripheral neuropathy.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

My understanding is that you are experiencing the side effects of the carboplatin chemo. My oncology nurse called it "bone pain." The platinum affects the bone marrow and that is also how the white blood cell count is lowered while on carboplatin.

I paid for the Moss Report to get the latest research on my type of cancer (papillary serous stage IIIc grade 3 with peritoneal carcinomatosis diagnosed 8/10) because I wanted to know EVERYTHING out there that might help me besides chemo. The Moss Report listed a product called "Biost" made by Standard Process as being beneficial. I have taken this supplement (made out of raw veal bone meal) 6/day with meals since starting on the same chemo that you are on. I also take other supplements to treat/prevent neuropathy and for general wellness. I also see a doctor who prescribed EDTA (chelation therapy) to remove the platinum from my bones after it has finished doing it's job. AND I am using high-dose ascorbic acid IVs 3 times/week to prevent platinum resistance.

I realize that I cannot compare my situation with your situation because I have only had 4 carboplatin treatments. However, I have no bone pain at all. The oncologist stopped using Taxol because I had "brain poisoning" from massive tumor die-off (after 2 Taxol treatments) and thinks I don't need Taxol at this time.

My hair fell out from the Taxol but since I am only on the carboplatin now, it is growing back and I only get mild fatigue and a few days of poor appetite after chemo. No other side effects. I had some mild neuropathy in the past but 300 mg alpha lipoic acid keeps that away.

Time will tell how I do (CA-125 is now 13.2 down from 17,000 in October 2010) although I already feel like a long-term survivor (it's just a matter of time because I can call myself that).

Best wishes,

Carolen

tani92163
Posts: 1
Joined: May 2011

Hi Childofthestars

I'm having the same problems, my last chemo treatment was April 2010, and Herceptin treatments ended in Dec of 2010. About 4 months ago my feet started to ache and than a month later my knees, hips and wrists, and now my muscle ache so bad it's difficult to sleep. I am a occupational therapy assistant and I work with elementary school aged children, I can barely get up from the floor after working with them for only 15 minutes. A month ago my family doctor prescribed Cymbalta, I'm taking 2-30mg pills a day. It has helped a bit, I'm not as hobbled when I get home. Before the meds I couldn't even stand to cook dinner let alone cleanup. I was diagnosed with breast cancer in both breasts June of 2009. I had a bilateral mastectomy in December of 2009. I am now 47 and some days I feel like I'm 75. I hope everything works out for you, good luck, Tani

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi Tani
Doesn't joint pain just SUCK!! I exercise and swim about 3-4 times a week and I feel almost pain free for an hour or so after and then pains return :( so I think that adreneline is obviously a good thing as it relieves the pain albeit short term - wouldn't it b nice to find a drug that could do this with NO adverse side effects!
((Hugs))
Michelle x

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Michelle,
I recommend you read the following book:
"Why Do I Still Have Thyroid Symptoms If My Lab Results Are Normal?" by Dr. Kharrazian. This book discusses the autoimmune condition you mentioned you have, and how to treat the condition, rather than taking just thyroid hormone, which does not solve the problem. As soon as I got onto his plan, my muscle and joint pain disappeared.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Thanks for that, i will order book from Amazon today and keep you posted.
Michelle x

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

There are three major groups of nerves in the human body.

1. The peripheral nerves that carry information to and from the limbs.

2. The nerves that supply the bowels and other internal organs.

3. The nerves of the head which connect to the ears, eyes, taste buds, etc.

Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves.

Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids, platinum drugs and the taxanes. These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected.

Symptoms in the hands and feet happen when peripheral nerve damage happens. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position.

If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed.

Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful.

Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:

Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

ppett
Posts: 1
Joined: Oct 2013

Good Morning Childofthestars...  I just joined this site today and read your story.  I completed my last Taxol treatment 6 weeks ago today and I too am 46 years old.  Your description above describes ME exactly... including the aches and pains in the joints and feet, and my eyelashes and eyebrows seemed to fall out AFTER the treatments were over.  UGH   But I experienced relatively few side effects during the actual treatments.   I have described my aches and pains to others exactly as you have described it above.. feels like I have just done a rigorous workout after not having gone to the gym in months!    I see that I am not alone and just wondered how long it takes before these symptoms go away?  I am achy all the time and hoping my eyelashes come back soon!    I have a little hair growth but feel like it's moving very slowly.   Any insight you have would be greatly appreciated! 

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Hi ppett 

I don't know wether you noticed the date of my messages but it was back at the beginning of 2011!  However, what I can tell you is that things DO get better :)) the achy feeling did eventually go after a couple of months but the joint pains just got worse & worse. In the end I realised it was due to being put into the menopause - I was suffering all the symptoms of menopause but unfortunately I seemed to be suffering them threefold!  My surgery had put me into menopause & I know that there are docs out there that believe surgically induced menopause symptoms can b quite drastic :(. Anyway after about 2 years of debilitating joint pain & hot flushes I took the 'radical' decision to go on Premarin (HRT) my breast doc was Not happy but it literally changed my life overnight!  Of note I had bc in 2010 (tripple negative) and was re-diagnosed with this again about 5 weeks ago and have just undergone surgery!  I'm BRCA1 +ve. 

Anyway what I am trying to say is that things DO get better although you may need a little bit of help getting there!  

Apart from my recent cancer outing I am fit & well with minimal achy joints, very few hot flushes lovely mid length hair & lovely eyebrows lol!!!!! 

Hope this helps. 

Michelle x 

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