I have been told that the numbness & extreme pain in my feet is permenant. I am just about to have my 6th & final chemo on Monday -

[Jen64]

Carboplatin & plactitaxel. The pain in my feet is extreme & keeps me awake at night. Does this condition get any easier & what have you done to ease the pain. At the moment walking is very difficult.

[TrishLey]

Hi Jen. I really do hope you are doing OK. This is a major side effect and is very common. I will tell you what has helped me but I must stress you have to check with your oncologist to make sure everything is OK with them. I get a regular massage (the husband/best friend does it) also I have had reflexology some women have had acupuncture as well but I am quite sensitive to needles so I didn't opt for this. Also some women swear by putting a bar of soap under their mattress (helps cramps) also calcium magnesium supplements have helped me. Plenty of water too. Although you may not feel like it but exercise (gentle) is good too also circling feet on a regular basis. Change your shoes I found I can't wear high heels or tight shoes anymore. Hope this helps. XXX You are not alone with this.

[Catharine]

So sorry to read about yr problems. I have lymphodema in both legs and feet which makes walking difficult, and painful. I have just got to learn to live with this somehow. My friend encouraged me to put on some nice nail varnish and encourages me to watch gentle excercise CD s every day.... Circling feet and wiggling toes. I have found wearing Crocs and M and S WASHABLE Slip on slippers the only shoes I can wear comfortably. I can't wear my trainers or any of my shoes at the moment but will keep hoping swelling is going to reduce over time. Aim to stand up straight and keep an eye on yr posture before you slip into bad habits and end up with back ache etc.... thinking of you xx

[Hidden]

Hi there... I was told that this condition can improve with time. I really hope it does for you. Love T xx

[MargaretJ]

I developed extreme numbness (though not much pain) in hands and feet after my first round of chemo 4 years ago I did not get taxol with my second round in 2010 because they said the taxol was responsible and it was permanent. I became allergic to carbo platin snd was given cisplatin, which caused tinitus. I have kust finished 20 weeks of weekly taxol and, if anything the numbness is less pronounced. Only the balls of my feet and the tips of my fingers are affected. I still have aches and pains but I take paracetemol 4 times a day and it does help. I hate being an old lady with a stick but I do have a folding stick to help with balance when it is particularly bad!

I hope that this helps!

Margaret

[hannakat in reply to MargaretJ]

I did 54 weeks of weekley taxol and am now down to every other week (20 of those so far) and doing really well. The taxol is truly holding my OC and keeping it as just chronic. My CA 125 was 95 before just going on straight taxol and now is staying around 25. Good stuff. The bottom of my feet have actually been getting better. You're the only other one I know on straight taxol. I've had OC for 9 yrs. (late stage--surgery, 7 different chemos) but taxol doing the job now.

[goinggaga]

I had neuropathy and muscle and joint pains with first round of Carbo/Taxol. These settled over time once chemo stopped. Can be permanent but hopefully it will go after treatment!

Love Wendy x

[Luvitlife]

Sadly this can stay.l have had it for 5 years and just make the best of it.when l have chemo now they dont give me the one that causes the neuropathy. It is a challenge every day but l feel at least l am here! Sheepskin boots and trainers are the best! But finding clothes to match takes time! Very best wishes.

[jennybutler]

I too had this with with carbo/paxitaxol it does get better over time, it was agony some nights and used too wake me up I took pain killers to help but my feet still pretty numb still tend to trip up if I dont pick my feet up properly while walking. So glad your on your final one long long remission too you.

Love Jenny xxx

[avid]

I too am troubled by this and tried glucosamine with some effect. I mentioned this at my last 3 month check and they have prescribed pyridoxine which is helping. I finishe'd first line treatment in September 2013.

[MaggyH]

I finished carboplatin and taxol in Feb 2013 and had tingling in the fingertips of both hands and the balls of both my feet. This has now improved considerably and I just have an odd numb sensation on the ball of my left foot. I hope your discomfort improves soon, and i was never told it would be permanent

Love Brenda x

[BJ_UK]

I have neuropathy in my right arm caused by osteoarthritis in my neck, and my GP has prescribed me pregabalin (Lyrica) to cope with the pain, which was at its worst when I was trying to sleep at night. I have found it to be extremely effective at what my doctor assures me is a very low dose. I don't know if you have tried this, but it might be worth asking your doctor about it if not. NSAIDs didn't touch my pain, but this worked for me. (Gabapentine, which I know some of you have been given, is similar, but my GP doesn't think it works as well as pregabalin.)

Hope you find something that helps soon!

Barbara

[Seachell]

Dear Jen64,

I had this happen to me too! It was so bad that my husband stepped on my foot one day in his steel towed boots and I didn't feel it at all! It really turned my foot black and blue too! Eventually, three years later there is little residual effect!

I have experienced a second outbreak of OC and this time around the Doctors are not using the Plactitaxel due to the effect the first time around! My CA 125 is falling slower than if they had used it but it is dropping anyway!

Best of luck to you! Michelle

[chemlcali]

I am sorry to hear this. I am five months from my last treatment of carbo/taxol. I was to have six rounds but we had to stop after four. I was crazy with pain and could no longer stand on my feet. I was in a wheelchair for a bit but now use a cane. Since I could not finish Chemo I also had 25 radiation treatments. My fingers were completely numb. I dropped things, could not grab pills,button shirts etc. My hands have recovered mostly and while my feet are better I still have pain, cannot wear shoes (I wear fleece lined slippers), use the cane and my feet are always numb. I had issues from the the first ounce and worry my life will never be the same. But, I am still alive. I pray you will fair better than I.

Jane

[Jen64]

Thanks for all your advice. At least I know now that it is just not me having awful reactions & that the symptons are a general occurrence. Have just been told my CA125 is down to 21 - whoopee - & that all my secondaries in my pelvis have vanished. The tumours in my liver have shrunk by half , so at least the treatment seems to be working. My Husband says my feet problem is a small price to pay & that at least I am still here. Onwards & upwards. I'm so glad I found this site as you have all helped me tremendously & I wish all of us all the luck in the world as we go forward. This is not what I thought my retirement would be. I'm 64 & mean to live till 94!!!

Jenny

[WendyD]

Mine disappeared after chemo. Some side affects go after it gets out of ur system. My onc said that it could take a while but like an earlier post it took approx 6 mths. I wore Fly Flots thru my treatment and ever since. They are so comfortable. Unfortunatly they have gone into admin. Dont know why as people collected them like handbags!! Pavers shoes use some of designs and they r just as comffy, just like walking on spongy pavement. Hope it goes same for u. X

[Monicarp]

Hello! I just finished my sixth cycle of chemo with carboplatin, plactitaxel and taxol for OC. My CA125 before surgery was almost 5,000, after surgery was 349 and after the third cycle was 19. I had repeated the test after the 5th cycle and still waiting on the results. Fortunately I have not experienced neuropathy because I take Cymbalta (30mg) for fibromyalgia and it helps preventing it. But most of the people receiving chemo with me (even with different meds) are suffering it. I have seen them diet, take special nutrients (with the doctor's approval), exercise, go to a physical therapist and nothing seems to work but physical therapy which helps with pain and mobility. It seems it will not go away while you are in treatment but for most people it is not permanent, and its like chemo brain, in the majority of cases it will get better within 6-12 months. I would recommend you talk to your doctor about Cymbalta or similar meds which could help, and also considering acupuncture. DO NOT let you neuropathy get in the way of your goal. Best of lucks.