I am about to have my 6th cycle of chemo and am suffering with numbness in both hands and feet , anyone else suffer with this

[Bettyann]

[spanishanna]

HI Bettyann, I have suffered with strange numbness in my toes and painful feet right from the start of my chemotherapy, Carboplatin & Plaxitaxol. It is still here almost 5 years later. Some Oncologists say it will go away , some say it will stay with me. I am on maintenance treatment though, so chemo is part of a way of life with me, as are the side effects.

I do hope you get rid of the side effects once your treatment finishes. What chemo are you on at present ?

Good luck.

Anna x

[Bettyann]

Hi Anna

Thanks for your reply. I am on the same chemo as you are and yes I too have many side effects which as you say its something I will probably have to live with, really pleased you are getting through on maintenance treatment and long may it continue,

Bettyann x

[Hidden]

Dear Bettyann,

numbness in extremities is definitely something you should discuss with your oncologist before more chemo. It is a known side effect of plaxitaxol, and they might want to change your prescription to avoid doing damage to your nerves.

I was lucky enough not to get it, but was asked abut it every time.

Best wishes,

Isadora

[Suzy]

I have had this right from the start of my first treatment (Carboplatin ) .It tends to go away after about 10 days and does not give me problems between cycles . Get hold of some magnesium oil (magnesium is absorbed more easily intradermally ) This is reputed to help . Anecdotally it seems to ease my symptoms. It is available from Amazon - as well as other places on-line.

[Frenchdeb]

Here in France I've been given a leaflet about this symptom and how to avoid it. I'll sumarise what it says just in case some of this might help you:

Stay out of the sun and direct sunlight (even if you are behind glass) and when outdoors use a sunblock at a miniumum of factor 15.

Take cool showers and stay under the cold water as long as possible. Soak affected hands and feet in a basin of cold water.

Avoid wearing gloves and socks whenever possible (even in cold weather).

Place ice packs on affected hands and feet DURING treatent

Wear baggy clothing and avoid any tight garmets/elastic

Wear shoes which allow air to circulate, with no or very low heels.

AVOID: Hot water, and wear gloves when washing up (or buy a machine! - that's my advice, not theirs.)

Using sticking plasters or adhesive dressings

Scratching

Activities which involve kneeling for long periods; leaning on your elbows; exercise involving "violent" activities such as running or jumping; kneeding or mixing foodstuffs by hand; wearing jewelery/underwear etc which is too tight.

You may already do all this but you never know, it might help a bit.

[spanishanna]

Oh my gosh, some of you in the UK have far better Oncologists who are concerned about the side effects than I do. I just told it is part of the treatment !!

I will add we do not get pain management here nor any other help outside of chemo. I go to hospital, have my chemo and I am then on my own. Luckily I have a caring English speaking private GP who I see for any problems.

Anna

[Frenchdeb in reply to spanishanna]

Saying "move over the border", Anna, is a bit drastic, I know (!), however: "la syndrome mains-pieds", as it's called here is one of the side effects which is treated very seriously here in France also and the advice if you do suffer (apart from all the tips in my post above) is to go straight back to you doctor and definately not to suffer in silence.

[pixie]

Hi Bettyann

The medics were very keen on avoiding those symptoms when I had treatment (carbo/taxol) last year. I had tingling in my fingers right from the start so they stopped the taxol after 2 rounds, although I continued with the carbo. They oncology team wanted to avoid long term problems in my hands & feet. Even so, I had problems with swelling in my joints & stiffness for several months after the treatment ended.

Talk to your oncolgist - the benefits of having both carbo & taxol, over having just carbo, are I think debatable - from what my onc told me, so it is worth discussing the pros & cons.

Gael

[Hidden]

Hi,

I was taken off taxol after 2 treatments as I had the feeling of 'walking on marbles'.( 4years ago) My onc said no more, but it was only when I saw my GP after talking to my hospice nurse (3 years later and still tingling) that I actually was given medication, but I'm not sure it helps much. Things seem to be tingling well at the moment, so I may ask if there is anything else I can take. The onc does the chemo and the GP does the side effects of chemo is what I have been told now!

I hope yours clears up quickly.

Viv

[spanishanna]

Hi Deb, our posts crossed so I didn't see your info, interesting reading. If only we got that type of support here.

No won't move over the border as my Oncologist has been treating a French lady as she can't get the treatment she needs in France !!

I find sitting in the sun impossible anyway with being on chemo, come out in a rash. I use Factor 50 on face and entire body when I do go out and the thought of being allowed ice packs during chemo - well forget it. My Oncologist won't even use the ice cap for hair loss as he says they are painful and waste of time.

Whilst he is a wonderful man, very caring and very reputable in the World of Oncology, he is a down to earth sort of guy and I can always see the expression on his face when I go with yet another sheet of paper re new drugs or even supplements to help me get through the treatment.

My toes are just a bit numb, no pain but I do have pain in the tendon under the feet. I am told to exercise this by using one of the soft medical tennis sized balls and just roll my feet over it. It actually does help exercise the tendon .

I personally am of the opinion that the combination Carbo/Taxol is the best way to tackle o.c. I visited Prof Kaye at the RM in Jan 2008 and he said my treatment here in Spain has been exemplary, I know he was amazed that I came straight back here and was put immediately onto Avastin combination, something he couldn't do. So yes whilst I moan about lack of after care, I do get the drugs, to me they are the most important.

Anna x

[Frenchdeb in reply to spanishanna]

I wasnt' really being serious! Your friend appears to have been unlucky as I've found the treatment here very good and the medics open to most suggestions. Like most countries I guess we vary from region to region and hospital to hospital. I will try the tennis ball trick as I have real problems walking so any exercise like that is great.

Bon courage (as they say here!) to both you and Bettyann (and of course all the rest on this excellent site.).

[Bettyann]

Thanks everyone for your very valued information. spoke to my prof today before chemo and was told that Carbo/Taxol was the best and It was preferable for me to stay on both for my last chemo 'fingers crossed' will just have to put up with the numbness but was told that it would gradually get better when the chemo stops.

So everyone watch this space.

Bettyann x