Morning all,
When I was having chemo, although I was asked if I had pains in my hands and feet and answered yes and explained those feelings, I was never told about peripheral neuropathy. Perhaps I should have asked why they were asking but if I did that for every question I'd have been there a week and not a day.
What was your experience of this? Zena xx
Hi Zena
I wouldn't wish my experience of PN on anyone. Last year (end of August) I was hospitalized paralysed and suffering with extreme pain which morphine couldn't deal with. The PN had started in my hands and spread up to my shoulders and was from my toes to my hips. After 4 days I was in emergency. Mid way through my 8 day stay I begged hubby to let me go as I couldn't take the pain (and heat) any longer but eventually, with the care of the medical staff, I started to recover but it took weeks of amino acids to get me walking again and using my hands. I was on morphine patches for ages. By Christmas I was ok again but after each carbo the tingling returned just a bit. Carbo/caelyx did the same but it was slightly increased so it was either one of them which triggered it but the first time it was the taxol. Hence, I'm never allowed it again. I did have a very extreme reaction, I admit, but nonetheless I wanted to die then and there as being paralyzed and not even be able to hold a cup or walk to the loo was the worst time ever.
They say that PN often does not go away but I am testament to the fact that it can and does. I hope you are not suffering. Check out L-Glutamine and Alpha Lipoic Acid for the amino acids as it was here that I first got to know about them. They saved me, I'm sure.
Take care. xxxx
Poor Krystal!
This experience is pretty horrible and terrifying, but we can use this knowledge to our benefit.
Taxol is the major culprit and if you are feeling any numbness in your finger tips or feet, you should discuss this with your CNS nurse, at least, if not your Oncologist, and they can lower the dosage, which can help.
When you are platinum sensitive, which is a good thing, the Carboplatin will be doing most of the cancer killing work, so lowering the Taxol will not hurt you.
But the lesson is here, so do take action.
Best wishes,
Laura
Hi Laura. The carbo has been stopped mid way through my second line as I'm resistant now and both avastin and caelyx did zilch. I only had one taxol and I'll not be given it again. No need for further consultation on the PN front as it's hardly noticeable after chemo and by the time I'm due another shot it's gone. But thank you for the concern and I'll just wait to see what the hycamtin brings on. Can't say I'm going to miss the caelyx. Horrible stuff. xx
You have really had a tough time. Did you ever try the Care Oncology Clinic? I haven’t needed it yet. Just wondering if it was another way to go...
I hope a new plan works out for you,
Find regards,
Laura
I don't live in UK
I got in touch with them for my sister, who lives in LA. Evidently, they use Skype and email to operate in the US.
It might be worth taking a look if you are up to it:
Good luck,
Laura
Oh Kryssy you always are the unlucky one with the side effects. It sounds horrendous, as if you weren't going through enough.
I've been very lucky by the sound of it. The cold affects my feet and I take a baby dose of Amitriplyline which seems to help a bit but that could all be in my mind.
So glad you are much better with it. I was told once the damage is done it can't be reversed. I sometimes wonder how good these experts really are.
You take care, always thinking of you. xxx
I think that you are right, Zena. Experts seem to get their knowledge from books whilst we live it. When I was told that it was permanent I just crumbled but not for long. I wasn't going to become another statistic. Funny enough I have a very tingly little finger on the left hand tonight. I've been sewing, altering curtains and ironing today. I'm obviously suffering from the side effects of being a domestic goddess. I won't do that again in a hurry. Big love xxxx
Kyrssy,
I just finished my last chemo 4 weeks ago and I'm still having bone pain as well as neuropathy. I'm very discouraged because I believed it would be uphill rather than stagnant. I just ordered L-Glutamine from Amazon. I read two articles following your post and I am excited to try it and feel hopeful again. I'm still on 1-2 oxycodine a day for bone pain and 1800 mg of gavepenton for neuropathy. It feels like this is going to last forever. I'm sick of the fire!
I really hope you get better on the L-G. I take that and ALA together at bedtime on an empty tummy as they work better that way. Also stimulate your hands and feet. I started knitting again when I could barely hold the needles and hubby massaged my feet every day whilst we watched tv. I'm sure that helped too. I didn't have any medication. None was offered. All the very best to you. xxx
Hi Zena. My neuropathy in my feet started after the first round of taxol, it got worse after each treatment until they stopped it after the 4th treatment. To this day I am still left with effects on the soles of my feet which gets worse the more I walk. Ive learned to live with it. Hope you are doing ok xx Kathy xx
Thanks Kathy, I'm fine. I was just reading a few posts about the neuropathy and although I have it, mine's not bad. It was a neighbour who told me what I was 'suffering' from not the hospital. They have discussed it with me since I mentioned it to them but it makes me wonder what else I don't know about.
Hope all is going well for you. Take care, Zena xx
Thanks Jenny, sorry you had such a bad time. Mine is nothing like as bad as that, just effecting a couple of fingers in each hand and not even too bad in my feet. I guess my description to the nursing staff wasn't enough to warrant them stopping my paclitaxel or telling me what was happening. Mine was also five years ago. xx
I'm the same months and months on I tread on cat litter and don't know as toes are numb still also weak muscles in my legs make stairs difficult....get cramps in fingers too...its horrid. Don't feel like my feet will ever be the same, can't even keep flip flops on anymore x
Hi Zena,
I have to say, I’m surprised that your team didn’t tell you at the very start that neuropathy was a possible side effect. All literature and advice I’ve been given by the hospital for all the treatments I’ve had have mentioned neuropathy. I look at the MacMillan website for advice too. My Taxol was reduced by 25% on my 5th infusion and I didn’t have it again. It was kindly replaced with Avastin!! It pretty much went away when I finished the carboplatin.
Now I’m having Carbo/caelyx my feet and hands are tingly but not painful so I’m quite pleased - other issues are of course more troublesome!
Best wishes Ali x
I'm glad you don't seem to be suffering too much, Ali. Some are in a really sorry state.
I must have either been bombarded with too much information or I had chemo brain and forgot. I just don't remember anyone mentioning it. It's interesting reading all the different degrees of it we all have. I think it applies to other cancers as well.
Thanks for replying, All the best, Zena x
Clearly for some of us it's set of by carbo, as it was in my case, though generally taxol seems to be considered the worse culprit.
One of my beefs is they tell us of what may happen but tend to be poor at telling us in advance what we can do to try to prevent/minimise it.
Far too many of us have found out about things from each other or from research which we've shared. This is great, but very labour intensive. And what about those who don't or can't do what we do?
I think I'll take a leaf out of Kryssy's book and go and be a domestic goddess for a while. It's too hot for too much of a rant!
I love a rant. xx
Four years on, I still have some numbness in my toes, but it's not hard to live with. I was part of a trial, so they kept a close eye on me and what with the neuropathy (and the rubbish bloods!), they stopped chemo early (13 out of 18 weekly sessions). But I am, touch wood, pretty much still here. Hope things are not too bad for you. Deb x
My story is pretty much like yours nearly 5 years on. My chemo was weekly and I didn't have the last dose because of the neuropathy. Luckily, my feet still get me about. I've never had the burning sensation. My toes feel numb and tender all at the same time also with my toes they feel like they're folding in on themselves when they haven't moved at all. I only get tingling in my fingers.
Thanks for replying and best wishes, Zena x
Hi Zena,
I was on chemo for 6 months and it was 3 components. I believe the one that caused my neuropathy was called FU for short (how appropriate). It may have been 5FU or something like that. I kept complaining that I was getting numbness and finally they cut the FU by only 10% for my 3rd last treatment. It still got worse so they eliminated it altogether for the last 2 treatments. But I guess it was too late. I naturally assumed that when the chemo ended it would start to improve but boy was I wrong. It got worse by quantum leaps, 2, 3, and 4 times as bad as when I was last on chemo.
So here I am now, 4 months after the end of my chemo and I can't feel my fingers. My feet are like two numb stumps. My elbow feels like it does when you hit your funny bone which is very irritating. My balance is off a bit but might be starting to improve. I drop things like bowls of cereal on the rug and on the kitchen floor. When I try to grab something I think I have it but I don't. An example is trying to eat chips from a bag. I reach in, grab a chip (or so I think) and my hand comes out with nothing. I may do this 5 times before I get one. I can reach in the drawer and grab a spoon but my hand will come out empty. I can do this more than once and then my hand will come out with two spoons. I have chemo-brain but then I was forgetful before anyway, so it's just like I have a double dose of stupidity now. Always pausing mid-sentence because I can't think of the words.
This has all been very depressing, especially the assumption that it will never go away. But I have to say that sitting here writing about it is almost making me smile because it all seems so stupid. And I have to be thankful that I'm still here after having cancer. And before starting to write this I read all the others and was particularly struck by the story of the poor gal who was paralyzed. OMG, that must have absolutely terrifying. When I read stories like that I just feel so stupid for even complaining at all
The Oncologist was not of much help. when I see him again in September he said he could prescribe medical marijuana and/or anti-depressants. Driving already makes me very nervous because my feet can't feel the pedals and at first there were a few times when my foot was on the brake and gas at the same time. I don't need to add being high on pot to that.
The Oncology nurse told me that one patient said that they thought acupuncture was of some help. so I have been trying that but to no avail. I think I have gone about 6 times so far. I have some medical insurance for this but it will run out soon.
I am also very weak. My hands are numb. weak and sometimes painful. Very difficult to do even simple things like open a jar or even a bottle of water. I have to whack the jar lids with a knife first and then use one of those rubber things which I also need even for a bottle of water, One thing that I really find embarrassing that I can't cut my toenails. If I am very careful and take my time I can cut my fingernails but the nail clipper may go flying a couple of times. I cannot do anything with my toes. My wife doesn't seem to want to help although she sort of offered but at the same time said that she would probably hurt me. No thanks LOL. I did pay a nurse to do it and she does this as a side job. I can't imagine all the money I will have to pay out if I have to pay for something as stupid as getting my toenails clipped for the rest of my life.
Anyway, enough of my whining. I wish you the best of luck. I must say that I am getting some comfort by reading here that others have the same problems and I feel very bad for those worse off than me. Cancer is such an awful disease and so common
Take care,
Tom
Not pleasant at all is it? Come to think of it I drop things more than I did. My brain hasn't gone back to normal either. I put it down to getting older but this not being able to find the words makes me feel like an idiot.
I don't know how old you are but I remember years ago my mum used to get her toenails cut at a local clinic. It wasn't every week but she didn't have to pay for it. Might be worth looking into.
Hope you get some improvements soon. Best wishes, Zena x
Thanks Zenaj,
I'm 69 but I feel like I have really aged a lot in the past year. And I'm not getting any stronger but maybe even weaker. I wondered if there might be someplace that would cut toenails for old geezers like me for little or nothing. I live in Canada and I don't think there is anything like that but I will keep looking. They are charging me 40 bucks. Are you in the UK by chance?
Tom
Yes Tom, which part of Canada are you? I love Canada but have only been to a very small part of it. I've been in the parliament building and listened to them discussing the first gay marriage. That was years ago and more than I've done in my own parliament which is less than an hour away from where I live. We were thinking of going back to Montreal to watch the Grand Prix but have never made it.
40 bucks sounds live an awful lot to me. Thanks God for our National Health.
Best wishes, Zena
Hi Zenaj,
I guessed the UK because you used Mum whereas in North America it would normally be Mom. I live in the suburbs of Tronto. I love England. I used to travel all over the world on business and I worked for a company based in Bradford. Spent a little time in London, loved York. The company was eventually bought by a Swiss one and then that one bought by a German one. I've spent a lot of time in Montreal and the restaurants are fantastic. Never saw the Grand Prix however.
Take care,
Tom
Hi Tom - I don't want to give false encouragement but I experienced exactly what you are describing. Numbness, tingling, weakness, pressure pain, deep muscle pain, burning sensation, loss of balance. And no, I couldn't cut my own toenails either! After 17 months, I thought I was imagining a small improvement. At 20 months, it's much better, almost 30 - 40% better. I hope for more improvement. It does seem to be possible, so don't lose hope. A fellow Canuck
Wow, that's fantastic maybe there is hope for me yet. Thanks so much for your reply. 
There is hope! And I too feel very blessed to still be around to, well, occasionally 😉 moan about my neuropathy. But the way, for me the medical marijuana didn’t have any effect, nor the anti depressants. But gabapentin took the edge off. Maybe ask your doctor about it.
I developed neuropathy in my hands and feet which grew steadily worse with each round of chemo. When I said I wanted to stop chemo as it was beginning to affect my quality of life, I was THEN told that it was possible to lower the dose of taxol, which I jumped at. It wasn't painful, it was a creeping numbness which was spreading further with each dose, particularly in my feet (exactly as others have described). I was told up front about it being a possible side effect, but not that the dose could be lowered if necessary. I got the feeling back in my fingers reasonably quickly after I stopped treatment - and just as well! My major fear was that it would stop me from playing bass - but it took a long time for my feet to lose the "numb lumps on the end of my legs" sensation.
I'm beginning to wonder if the reason we're not told some things is because they think someone else has told us. We see so many people during the consultations, nurses, chemo unit etc. that some of the information must slip through the net.
I'm glad you're seeing some improvement. Like you, if I couldn't play guitar and piano not forgetting my knitting and bobbin lace making, I wouldn't know what to do with myself. Now I feel bad because there are so many people that are unable to do any of these things. Still, I can only compare my own before and after.
Best wishes for continued improvement. Zena x
When I was a month away from the end of my 6 months of chemo they cut out the one of the 3 drugs that was causing the neuopathy. It was then that I was told that the 2nd 3 months of chemo had much less effect or benefit anyway, than the first 3 and that many people opted to only take 3 months. I almost fell off my chair because I didn't recall hearing that at the beginning. Having said that I'm sure I would have opted for the 6 anyway because I wanted to be sure the cancer would get killed. I did choose the drip because they said it was a mere 5% more effective than the pills but i wanted maximum effectiveness.
It's so different for all of us. I didn't even know you could have a pill. Then again, I'm a bit of a yes person so whatever they'd have said I would have done it.
Wish you all the best, xx
BTW mine was colon cancer. The chemo was 5FU and two other drugs. Every other week I would go to the hospital for a 2-hour drip and then go home with a small bottle attached for 48 hours. I had a PICC line which I hated and combined with an ileostomy, at all made it really difficult to shower. Not to mention being dizzy, especially when closing my eyes. I still have to hold onto something when I close my eyes.
I should be having a reversal operation soon but it has been delayed. I see the surgeon on Friday for an update. I'll be glad to get that over with although I'm not looking forward to the hospital again.
Take care,
Tom
Sounds horrible. Good luck with the reversal operation and lets hope for good news on Friday.
Best wishes,
Zena
Thanks Zena,
I will let you know what happens. I saw him on June 13th when he said let's do it in 4 to 6 weeks. He just wanted me to have another dye test. But it was 4 weeks by the time the hospital called for the test and afterward, I called the surgeon's office and the secretary said she couldn't fit me in to see him until July 27th. She went on to say that the OR is very busy and that they also shut it down for 2 weeks in August. So obviously no 4-6 weeks now.
Take care,
Tom
Times go well out the window sometimes. My last appointment, in March, turned into a different discussion altogether and my next appointment isn't until October which means I haven't had a proper appointment since last September. I've had the blood test though, so I'm assuming everything is okay.
Best wishes,
Zena
Hi Zena,
OK, I went to see the surgeon yesterday, finally and he want s to do yet another sigmoidoscopy just to make sure that the narrowing he fixed last time is really fixed. Last time this was EXTREMELY painful. It was almost like he was deliberately trying to see if the bowel would break with his fingers. This was after doing two balloonings. Anyway, too many details.
He has 3 weeks vacation and the OR is shutting down for two weeks (not sure which two) so I have no idea when this operation will be but I guess it won't be too soon.
After hearing others in here and even someone I know talk about the ice at chemo to prevent neuropathy I finally realized yesterday that all these other people who put their fingers in ice would have to have had a different chemo than I had. I came to this conclusion when I remembered that my chemo makes your hands extremely sensitive to cold. They tell you to use gloves to take something out of the fridge A friend was actually given a pair of gloves by the hospital for this purpose. Also if you drink an ice cold drink your throat can actually feel like it's closing up so you can't breathe. They told me that in actual fact it is not closing up but your brain thinks it is. I didn't experience anything quite that bad but I did have to let drinks come to room temp before drinking them. And cold things were painful in my hands.
Anyway, that's my update for now.
Have a great weekend,
Tom
This all sounds horrendous, Tom. I'd definitely avoid the ice if I were you listening to what you say.
I've been very lucky. I've just made a margarita from my new vegan cook book. It was delicious. I'm not a vegan, if fact I'm not even a vegetarian. Both my children are though and I think a bit is rubbing off so I hope to improve my health, which isn't bad really, as much as I can, by adding the occasional veggie or vegan meal. I'm don't think a margarita can be considered a vegan meal but it's a start.
I'm so sorry things are not going too well for you at the moment let's hope there's lots of good times ahead. Can't someone else do the test whilst your surgeon is away. Perhaps they will have a more gentle touch. Let's hope so.
Wishing you the best and better news. Zena
Oh, the surgeon is doing the test but believe he goes away very shortly after, to England. And since my chemo is over the ice is not an issue. But I did feel like I may have missed out on something until I figured it out.
My daughter is kind of a Vegan I think. More accurately she's a fussy eater who doesn't eat meat. I think one time she was eating beef and saw a vein and it turned her off so much that she never ate it again. Something similar happened with fish. She will still eat chicken and was eating pork but I think pork may be off her list now. She has stayed very thin though and is in great shape. I think I am not supposed to eat things like salad or beans or things with seeds until I get this reversal. Hopefully, when I do I will finally start eating better than I used to.
I read stuff about not eating sugar with cancer. I even know of a guy who had colon cancer and flew to Chicago all the time to see an anti-sugar doctor. When I last saw my Oncologist he told me that from now on I should try to keep my blood sugar low. Maybe there is something to that. Have you ever heard that? He also told me to avoid red meat and that he included pork as red.
Take care,
Tom
I haven't heard anything specific about avoiding sugar or red meat but generally everything I read advises to cut down on sugar and red meat for good health. I believe everything is okay in moderation but I rarely eat meat. I can't say the same for sugar what with all the cake and chocolate I demolish. I do love the bbq ribs at the Hard Rock Cafe.
A vegan doesn't eat anything that comes from an animal so not only meat but milk, cheese, eggs etc. That is one step too far for me as I can't imagine a life without cheese. A vegetarian doesn't eat meat but will indulge in milk and other dairy products. I have vegan cookbooks and use the recipes but I use honey and ordinary milk.
It never hurts to be a bit careful about our diet. Obesity is on the increase and isn't good for our health or so we're constantly being told.
Best wishes,
Zena
I don't really eat much meat either. I probably eat way too much pasta for someone with an Irish background LOL. I had switched to whole wheat paste a few years ago which I think is probably better for you But when I got the ileostomy they told me not to eat whole wheat anything so I'm eating the white stuff for now. I love ribs too and pulled pork but don't get to eat either very often.
Someone we know of in the States had colon cancer. He was a very wealthy guy and was being treated at the Sloan Kettering Cancer Center in NY. I believe it's a very prestigious place. At the same time, he was flying to Chicago and also being treated by a doctor who preaches that you should not eat sugar as it feeds cancer. Unfortunately he didn't make it as his colon cancer had spread to his liver and lungs I think. When I mentioned this to my doctors at first I think whoever I told kind of poo-pooed the idea saying there is no evidence. But then oddly, I thought, when I finished my chemo the oncologist told me to avoid red meat including pork and to keep my blood sugar low.
I really have a problem with sweets. I must have inherited it from my mother who loved eating goodies. My wife does not help at all because no matter how many times I say I need to stop eating this junk, she just keeps buying it for me. Yesterday cookies, and tapioca, today fancy brownies with icing from an Italian bakery. OIf sugar really does bring back the cancer than I am doomed and there is no help for me at all.
Thanks for clarifying what a Vegan eats as I have never understood the difference between that and a vegetarian. So do vegetarians only leave out the meat? Do they eat fish and chicken and cheese etc?
Regarding obesity, the only good thing to come from my illness and ileostomy is the loss of 40 pounds. I had not been able to wear my jeans for 10 years and was so proud when I could finally fit in them again. However, with the neuropathy ,I can't do up the button. I also had to put a paperclip on the zipper. I have finally just given up for now and just wear those loose pants that are basically pajama pants. I even go out in them and don't care what people may think as long as I'm comfortable.
Take care,
Tom
Hi Tom,
Vegetarians don't eat anything with a face, as my son puts it. No fish, chicken pork, beef, lamb, ham, sausages, any flesh from a dead animal. (Unless they're stranded on a desert island and there's nothing else to eat). My son has been a vegetarian since he was 7 and became vegan a year ago. He's quite determined.
I'm worried about your wife buying you all that sugar, she should be trying to help you not encourage you to eat things that might harm you. You be stronger and don't eat it if you know it's not helping your illness. (That was a bit blunt but I couldn't find an easier way of saying it).
Take care and don't eat too much sugar. (I can talk, I eat chocolate most days and like a drop of rum) Zena
LOL thanks for the morning smile. I love the face analogy and I will do something about the sugar. I think after my reversal operation (whenever that might be now) I will be more determined to stay away from the junk food. As far as my weight goes I'm getting away with murder now but I don't want to gain it back.
I have enough insurance left to go to acupuncture about two more times and am trying to make an appointment for Friday right now. Having said that, my numbness is even worse yesterday and today, especially in my feet. So I think it's a good bet the accupuncture isn't doing anything.
Tomorrow I see the surgeon again for yet another butt test. Last time was extremely painful and they used a balloon twice to try to stretch narrowing in my colon. I hope I don't need that again.
This neuropathy is a funny thing. Sometimes I don't know I've got it and another time my feet feel numb and tingly all at the same time if that's possible. My fingers are not too bad. I'm five years down the line now and haven't really noticed any difference and I was told that it was incurable. Then again I don't think I'm supposed to be breathing now either.
My son used to say he didn't eat anything with eyes until we realised that potatoes have eyes.
We've just got back from the Hard Rock Cafe and enjoyed ribs and cheesecake. Not together. I washed it down with a margarita and a couple of rums. Lovely but not good for the diet.. Hey hoe you only live once.
That's a mixture of info for you.
Take care, Zena
That's a good point, Zena. We only live once and I can hardly believe how time has exaggerated as I've grown older. I'm 69 now and have even had cancer so who knows how much time I have left? I feel like I should be trying to do fun things or family things or anything that's more worthwhile than what I'm doing.
As an update, I went this morning for another sigmoid thingy test. This time he did not have to do additional stretching or ballooning of my colon. It hurt like heck again when he stuck his finger (felt like a fist) in me and shook it around but this time he didn't do it for as long as last time and also did not invite the young intern gal to do it. I was so relieved and still feel a great relief after worry about this for weeks.
I see the surgeon again next week and then he goes on vacation for 3 weeks and will do the reversal as soon as he comes back. At least that's the current plan and the plan has changed before. The neuropathy is no better. I go for acupuncture again tomorrow but it's not doing anything. I can probably go one more time on the insurance. While it hasn't improved I think I am kind of getting used to it.
Take care,
Tom
Just shows, Tom how much wasted worry there is. I say bank the worry until you really need it. (Easy to say)
There's the positives, you're alive and none of us know how much time we have left. Most of us don't do much really. Do you have any hobbies? If not, start one. Do you have a big family? They're probably worried that there's nothing they can do to help you. The neuropathy might improve in time. Try some finger exercises, you never know, it might help.
Which part of the world are you in? Could you visit a few places? Just a few ideas.
It's surprising what you get used to but you can change a few things if you really want to but it can be very difficult. It's so easy to sit about all day especially when retired. Once you get going you'll be well on your way.
Best wishes, Zena (sounding like a bit of a nag now)
Hi Zena. I am sorry you and many other women have to deal with this and I may have to, in the future as I am on 1st recurrence, both times on Carbo/Taxol. I know what I am saying is "after the horse has bolted!' but I feel so cross that Oncologists and nurses don't warn us that neuropathy can happen and tell us about iceing our hands and feet with ice mitts etc reduces the possibility of neurotherapy.
So far, this has worked for me despite the chemo nurses at the clinic telling me I don't need to ice. Well, I have done my research and also on Inspire and yes, I do, so I am!!
Hope it lessens and goes away for you and everyone. Hugs from Australia.
Thanks for replying Tara. I've only just learned by reading the comments about the ice thing. I was wearing fur lined boots with two pairs of socks because I was so cold when using the cold cap. Not one person suggested I should be doing the opposite.
I'm interested in other peoples opinions but I have little to complain about myself. I find the neuropathy comes and goes. I think it's to do with our weather.
We have very hot weather here at the moment and haven't seen rain for over six weeks. Doesn't sound like England at all does it? Mine will be far worse in the winter.
All the best, Zena x
Hi Zena. I am actually English but have lived in Australia for 35 years! But used to visit my Mum quite often in London and my sister is there. Yes, the weather has been crazy hot in UK this year. Of course I am very used to hot weather here and love it! Anyhow, glad to hear your neuropathy comes and goes and hope it disappears entirely. Its aweful losing our hair, (2nd time now) but for me, its health that really matters, not hair. But we are all different. Hugs from Oz.
Is it helpful to ice in the evenings too or just while receiving the actual treatment?
Hi again. I haven't heard of anyone icing in the evenings. I have seen on the USA Inspire site on the ovarian cancer string when I type in neuropathy and icing, that some women ice an hour before and/or after for an 1hr. But I just do it as my chemo starts, cos its too hard doing that on way to and from chemo clinic and it just feels too much to do! I also asked my oncologist to lower my dose as Taxol over recurrences can really damage us. She agreed and I have had 6 chemo's now and no problems on my frontline treatment or so far now with neuropathy.
I have also just gone into remission on my CA125 cancer marker which is amazing, great news on lower dose Carbo/taxol. But have to keep going for a while of course on chemo.
You can also google and check what chemo drugs you are on, as not all of them cause neuropathy. I know cisplatin and taxol are bad for neuropathy but there are others as well. Carbo platinum is 40% possible and more at high doses but less toxic than other drugs. When my hands and feet get really cold, I remove the mitts for 5 mins or so and then put them back on. I just did that cos it was too cold. However, I recently read we shouldn't let them get too cold because that can also cause nerve damage!!
So its good to research it all, here, maybe on Inspire site and Google. Hope this helps and hugs from Oz. Hope my replies aren't too long!
Hi Zena. I had this quite badly while on Carboplatin/Paclitaxel last year. It affected some of my toes, the bottoms of my feet and tips of my fingers etc. The dosage of the drug was decreased to prevent further damage. I came out of the end of this treatment with some residual in all of those areas. It has now been 12 months, and they are not sure whether this will be permanent now. The areas which affect me most are the tips of the fingers, as while there was some improvement, I still pick up things from time to time and they slip out of my fingers. The worst one is the soles of my feet, as each morning It is quite painful when I walk initially. It does come right to a certain degree after I have walked around a bit. I have now had a recurrence and I am on Carboplatin and Gemcitabine
So waiting to see if it will affect me again with a different drug combo. Had my first infusion Friday, and I have just noticed today that the bottoms of my feet are slightly burning. Fingers crossed. The Oncologist was always on the alert for this side effect and moved quickly to make changes to try and reduce the chance of it becoming permanent, so don’t let it go to long before you say something. I would have to say that on the other hand I was concerned that the efficacy of the treatment would be downgraded by reducing the key drug, and I still wonder if that is the reason my first line treatment has not been successful. Hope this helps Cheers Therese
Thanks Therese. I'm sorry to hear you have you have recurrence. Let's hope it's not as bad this time.
Because I had my chemo weekly, on a trial, I wonder if that made a difference for me. I guess we'll never know. I was probably being monitored closely just that no one was telling me.
Good luck with the treatment and thanks for replying. Zena x
My consultant discussed peripheral neuropathy with me quite fully and explained exactly what it is and what the possible and or probable effects were. He said that it is quite a common side effect with the paclitaxol, however in many cases it goes within 12 - 24 months of chemo finishing and obviously in some it stays to a greater or lesser degree. I had clear cell carcinoma and many of us know that has a nasty habit of not buggering off 😬, I discussed the effectiveness of the paclitaxol on the cancer and he said that of the two drugs (taxol and carbo), the taxol was the more effective on the clear cell. It was an informed decision I made to continue with both drugs. I now have constant pins and needles in both my hands and both my feet interspersed with numbness and also shooting pains from time to time, my spacial awareness is totally out of flunters which means I tend to knock things over and/or drop them, I also sometimes have difficulty in foot placement and I get tremendous cramps in fingers and toes (bizarre when it happens as well as very painful). Apparently a high intake of alcohol can cause the symptoms to be worse, fortunately I drink very little.
I made a point of investigating the PN and decided it was worth taking the chance as opposed to possibly dying if the disease wasn’t dealt with. Sometimes I find the PN a real pain in the proverbial especially in winter when it’s so much worse but I don’t regret having the taxol at all and have had 4 years I may not have had and hope for many more to come.
I know some people have far far worse PN symptoms than I do so can only speak from experience but I am so happy I’m still here to annoy everybody 😂.
Happy Sunday morning everybody ❤️Xx Jane
I'm glad you're here too. It varies so much. Mine is also worse in winter but I was told it is permanent damage and can't be reversed. That's something they can't agree on by the look of it.
I get cramp all the time these days but not in my hands and rarely in my feet. I was told it's because I don't drink enough water. I drink at least 4 pints a day and it I drank much more I wouldn't have room for food and would need a permanent seat in the loo.
Thanks for replying, Jane and best wishes, Zena x
Hi Zena--can't add much except to the comment that the medical staff don't know it all. When on Carbo/Caelyx I got PN in one right foot and right hand and my onc's nurse told me its always symmetrical. Well, I am proof that is not true. Then, they told me the PN is mostly a "contact" issue, meaning, it will effect you when you put pressure on it (walking, opening a jar) and I told them I get the burning in my foot when swimming and they told me its not possible as not a contact activity. It was PN, it was from treatment and it did go away a few weeks after it ended. So there. Wishing yours does too. oxox
P.S. Poor Kryssy--for goodness sake, that story is awful!
I agree, poor Kryssy, we're so lucky aren't we?
It can't be only contact as mine is worse when I'm in bed. I've had mine nearly 5 years but I'm used to it now and to be honest it hasn't stopped me doing anything and compared to others suffering mine is nothing.
Best wishes, Zena x
Hi Zenaj! Terrible PN in hands & feet, worse in feet, worse on right side. Got it immediately. The actually had top titrade my chemo because of it. As a keyboard player, guitar player, and drum (to say nothing about what chemo had done to my voice!) It's havoc with my world as I once knew it! Tried Gabapentin (Neurontin), not enough help to deal with side effects, plus it's multiple times per day. Tried amino acid (heartburn) and no help. Tried B Vitamins (particularly the ones for neuropathy), but no help there either. Going to try TENS unit but don't hold much hope. Bottom line? It sucks BIG TIME! I did Taxel Carboplatin every 21 days. 3, surgery, 3 more. Keeping you in my thoughts. XO!
...Cyndie
Thanks Cyndie, I'm so lucky that mine isn't really affecting my hands too much. I can't use that as an excuse for my bad guitar playing.
It seems to be luck of the draw how badly it affects us. I know we're all different but it seems strange to me that the differences are so great.
Thanks for replying and best wishes, Zena x
I suffered from awful joint pain and pn after carbo/taxol, last treatment 18 months ago. Joint pain only lasted 4 days during each treatment but the neuropathy has stayed in my feet so quite uncomfortable at times. I did not know that lowering Taxol might have helped as was not told this. I am told it is probably permanent now. Fingers are ok. Not sure at my stage if L. Glutamine etc would help. If anyone knows better please let me know. If I never have to have chemo again it will be a small price to pay. Pleased that my hair has grown back as being hairless was not a good look! Got amazing wigs though. Georgina xx
Sounds like you're on the up. xx
Hi Zena,
Just as an update. No date yet for the reversal but getting closer. It could possibly be early September or at least sometime in September. I'm apprehensive but want to get it over with.
The neuropathy is about the same. I probably went to acupuncture about 7 times with no luck. I know this sounds dumb but someone told me they were totally cured by a chiropractor doing something to the back of their neck and talked me into trying it. However, their neuropathy was not from chemo and I assume was very mild so I have about zero confidence that it will do anything for me. I'm being pushed by another family member so just going through the motions and will report back on what happens.
Take care
Anything is worth a try. I'm just going to live with it now. It's always worse in winter so that's something to look forward to. I was told the nerve damage is permanent but I've also heard that some seem to have improvement. Fingers crossed it will work for you.
All the best, Zena
Thanks Zena,
I'm in the hospital tonight. I had my reversal operation this morning. There was also a hernia involved and prior to the operation, the surgeon said that even made it easier because he didn't have to cut so much into the muscle because it was already split. Having said that this thing hurts like hell but at least it's finally getting over with. They didn't have a room for me so I am spending the night in Post-op but that's fine
My biggest fear is the catheter and so far I didn't get one, not even for the operation which this time was a little less than 2 hours instead of 6. I have a prostate problem and I think that's why I have a deep or stretched bladder. So in the hospital when I pee they make me do it in a bottle and measure it and then do a bladder scan afterward and if there is too much left in me they want to slam a catheter in. Last summer when I had the cancer out and got the ileostomy they sent me home with a catheter and to me, that was worse than the operation. So now I am terrified that they will give it to me again, I have the email address of the Urologist so I just sent him one and asked if he would pop in the morning if he is doing rounds. They told me not to bring my meds this time as they would give them to me but they didn't so I didn't even get my pee pill.
On th neuopathy side, I don't think my hnds are getting any worse now thtit's been 6 months since chmo. Not getting better though either, My feet may actully be geting worse and now I get spasms in them tht really throw me for loop.
Best regards,
Tom
Best regrds,
Tom
I'm glad the op went well. You're on the way up now. I know what you mean about catheter. I hate the idea of them. With women there's always an infection to look forward to. Luckily, I've only had one and that was enough. Do you think the fear is worse than the actual event? I wasn't looking forward to the tube down the throat but it wasn't as bad as I thought even though it was a waste of time.
What are the hospitals like where you are? Here, I sometimes think the left hand doesn't know what the right hand is doing, if you know what I mean.
I hope you're feeling a lot better now and wish you all the best.
Zena
I can hardly belive that they let me come home this morning. A doctor told me last night that if I fart they will send me home. Last night I exploded LOL and they did let me out today. The pain is awful and the pills not only don't s\do anything but that make me constipated so I have not gone again in over 24 hours. I slept on the chair most of the day after 2 horrible nights of no sleep in the hospital
Here I think we have some good hospitals and some terrible ones. The one in my town is absolutely awful. The staff are mean and nasty and they don't have enough of them. The place is filthy and they literally swept dirt under the rug in front of my friend. I opted for a bigger city and a cancer hospital and every single person there has been just wonderful for the entire year. I cannot say enough nice things about them. Maybe it's because it's a cancer hospital but then all the hospitals in that city seem good .
Take care,
Tom
Which town is it Tom? I'll make sure I avoid it.
I had a bowel blockage last November and was told the same as you. Mine took 5 days to sort out. I got out the hospital Friday night and started a trip to Boston first thing on the Monday morning. I was worried I wouldn't make it.
Hope you're sleeping back in your bed and getting some lesser explosions.
Take care,
Zena
I'm in Burlington Ontario but am being treated in Hamilton. My poor Dad spent an entire year in the Burlington Hospital, and it was hell for him. He had 5 operations and was often left in pain for hours and even had mean nurses. One time he told us that a nurse did something so mean to him that he couldn't even talk about it. After getting out of the hospital for 3 months he was rushed back for a 6th operation. He waited in the ER for 9 hours in extreme pain before they looked at him and after he died his gold ring disappeared.
I met a gal in one of the Hamilton Hospitals a few years ago where I was having a colonoscopy. She had driven her husband there to have one. She told me that the one in Burlington only hires people that have been fired from other hospitals (presumably because they get them cheaper) and she followed up with " I know because I work there and I'm a supervisor". I was amazed by her openness and honesty. So amongst my family and most of my friends, if someone gets in trouble they head for the City of Hamilton in the other direction the town of Oakville.
I finally slept last night after the two previous sleepless ones but I still have not gone to the bathroom since two night ago in the hospital which is really concerning me. I suspect it may be the painkillers and they don't even work for the pain. Something called Dilaudid 2 mg but does nothing.
Have a great Labour day weekend
Tom
It sounds to me, Tom that that hospital needs closing down. I don't blame you all for travelling to the other one in Hamilton.
I've been away for the weekend so hopefully during that time you've had some action. I think painkillers can have that effect. Ask for some laxatives. You'll sleep better too.
All the best, Zena
Hi Zena,
The weekend was terrible. I think I may have a blockage. I just wrote a long reply and it disappeared before I could post it ..Spent most of it in the bathroom and one time didn't even make it. Almost nothing coming out but when it does it's very thin like when I had the tumor blocking it, I did have a very narrow part prior to the reversal which the doctor stretched and I wonder if it is still a narrow point. I am pretty sure it's scar tissue where they re-attached me. Was it Roann Rodandana who said "It's always something" If not neuropathy, unsteadiness, chemo-brain, incision pain,,,.... burning butt
Have a great evening,
Tom
Sorry you're no better. I thought there'd be some good news. I think now we've had cancer there will always be something. Small things seem big now.
I've going to play badminton tomorrow now the seasons started again. We're a load of old crocks walking about the court. We have a laugh though.
Take care, Zena
Thanks Zena,
I didn't think the reversal would be such a big deal. The incision is fine but the plumbing isn't working right yet. I saw the surgeon yesterday and he used his finger to check the spot that he had stretched before the surgery. He can feel it but doesn't think it's blocking so I'll just keep plugging away and eat small amounts at a time.
Hi Zena. So sorry you and the other women suffer from this.
Alot of good advice been said. I wish all new chemo patients were informed about neuropathy and icing hands and feet as well as vitamins etc others have recommended.
I iced my hands and feet all through Carboplatinum/Taxol and again halfway thru now, my 1st remission, same regime. So far, I have been so lucky and had no neuropathy. Just occasionally knock things over, like my lunch bowl twice or drop a fork! But no pain or tingling etc so far.
Please ask your clinic nurses if they have the ice mittens for your hands and feet. If not, use large oven gloves and put icepacks in. If you get sore mouth or ulcers, suck ice cubes/icechips during chemo. It' s really worth it.
Hugs from Oz
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