Ta*ol-terrified

Hi Josephine
In my experience, once you are over the AC, then Taxol is a walk in the park. If you do get neuropathy (your fingers/feet getting tingly or losing the feeling in them) then make sure to tell your doctor immediately - so they might defer the treatment but they will resume it once the feeling has returned - but it is a lot better than never being able to reverse the problem. I was lucky in that I noticed there was something odd in my heels and sure enough it was a touch of neuropathy - they deferred the treatment for a couple of weeks and in the end, they didn't give me the last treatment but I was happy enough at that stage that we had done a good job with what I had gotten up until then.
Drink loads of water; that is going to be written on my headstone, but I can't tell you how much I swear by it.
On a positive; my hair started growing back around my 8th Taxol session not that it mattered really, but it goes to show how things affect people!
I hope you find the next 12 (?) weeks go as quickly as they did for me.
Best of luck, x

Hi Encee
Thanks for reply.
I'm to have 4 taxol treatments. I don't know if that's 4 of the same as when someone gets 12 or is it 4 higher concentration ones? I'll ask on Wed.
Fingers crossed.
Josephine

Hi all
Well I got myself in such a knot and nothing happened! I didn't have a reaction. The infusion was so slow it took about 5 hours.
So far I haven't felt sick at all. I'm off all the heavy duty anti emetics which is great. I feel a bit more achy today but that's all. Will keep you posted.

Josephine

Hi Josephine
Aw that is so great! Really delighted for you that it went so well!
I'd be the very same. Always the worst case scenario out before me.
Here's to it continuing like that for the remaining 3 !
Well done girl!
All my best,
M

I'm glad you had no episode, up and onwards! Keep an eye out for numbness or funny feelings in fingers and feet- it's better to act than regret!!

Regards and good health

Hi again
Thanks for replies.
Today is the first day I've felt a bit off form but I just needed a few motilium. My fingertips are feeling a bit odd, like I've been holding frozen food too long. I rang the hospital and was told not to worry unless it got very painful. Has anyone got any ideas re making fingers any better?

Josephine

Hi Josephine,

Glad to hear that your Taxol treatment is going well overall. The tingling fingers seems to be a common side effect. At the stage yours is at I didn't find anything particular that helped other than keeping my arms and hands warm at all times and doing some exercises with arm movements.

Take care when handing fragile things. If the strange feelings intensify do let your oncology team know. If it turns to pain, it helps to have a brisk shower before going to bed at night. Hell while you are in the shower and towelling yourself dry but bliss afterwards!

My hair also grew back while I was on weekly taxol.

All the best

Kathleen

Hi Kathleen
Thanks for the advice. That's interesting about your hair growing back while on treatment. I still have my eyebrows and lashes and I'm wondering if there is any hope they will stay there? I wouldn't be a dab hand with an eyebrow pencil
Josephine

Hi Josephine,

I certainly hope for you that your keep your eyebrows and eyelashes.

Here is how it happened in my case. My eyebrows are very pale and fair with a few dark hairs that are just enough for my eyebrows to be visible (I am no good with eyebrow pencils or the like either!). Four weeks after the end of my chemo my eyelashes all fell out suddenly, as well as all of the darker hairs in my eyebrows, but not the fair hairs. Strange because at this point my hair was coming back. The eyelashes started growing back immediately and within about 2 to 3 weeks were back to normal. Getting the dark hairs back in my eyebrows probably took about 6 weeks.

By the way a friend of mine had eyebrows tatooed on. It looked great while she didn't have any eyebrows but now that her eyebrows have grown back it looks very strange indeed, so I definitely wouldn't recommend that.

My hair came back unevenly, back and sides first, then top and finally the front and temples. My first Taxol was at the end of January, last mid March. By early May I had good coverage on my head, and by mid June about an inch of hair and no need to cover my head anymore.

I hope the rest of your treatment goes well. Take care.

Hugs

Kathleen

Hi Kathleen
Thanks for reply.
My eyebrows are dark and very visible normally. I notice now they are thinning out by the day. I'm delighted to hear how quick your hair came back. My son will have confirmation in the spring and I'd really like to have my own hair for the photos!
Josephine

Hi Josephine,

You could ask your oncologist about taking Vit B6 for the neuropathy and also I was recommended to take 3 neurofen for a week starting the day of each chemo session. I'm a violinist and my oncologist was very concerned over me so he did quite a bit of research on my behalf. And the above was what he came up with. So you could ask your guy about all of that too and see what he says. Also wearing gloves for just about everything from gardening to washing up. And be very careful around cooking. Also I was told to avoid putting my hands into too hot or too cold. So some of that might make a difference.

Now I did get a little neuropathy and my nails lifted a little which was kinda sore but it's all getting better already and I believe that's quite quick. So I'm thrilled. I'll be able to get back to playing very shortly.

I, more or less, kept my eye lashes and eyebrows too. But they thinned out quite a lot. I did end up having to use an eyebrow powder applied with a brush from BareEscentuals. They do that make-up range in BT's and in Debahamns I think. I was uselss to start off with coz I never needed to use an eyebrow pencil before (I was always more of a hairy molly!!!). So I did have to practice a bit (sooo vain) but I got the hang of it and thought the powder/brush carry on much easier than a pencil. And less daunting too. But they're all coming back now slowly but surely. And I have a fine head of hair, albeit that I'm grey as a badger but hey: it's hair!!!

Best of luck with everything.
Sarah. XXX

Hi Sarah
Thanks for reply.
Actually I was asked if I'm a musician, but I had to confess to having no talent in that area!
I've been worse after the 2nd taxol. Constant pain in my right hand and wrist. I never had much pain after the Newlasta but this time I was totally flattened the following day. What I have noticed is if I am too active, I get awful pains in my legs, esp feet and knees. I phoned the hospital today and they said its all normal side effects and will prob get worse before it gets better
Anyway, at least I don't have nausea anymore
Ill have to ask about the B6, I'd love to do something to help myself but so far the team seem to only want me to stick to their plan.

Goodnight

Josephine

Hi Josephine,

I'm as sorry to hear you're having a rough time of it with the bone pain and joint pain. I was told I could take Brufen when I was on the Neulasta but I only had to take it a few times. I was kinda lucky that way really. Did they say you can take Brufen?

I'm afraid (being a teacher!!!) I'm a great advocate of doing what I'm told and I did place all my faith in the medical profession. I figured they have all that book-learning so they probably know what they're talking about. That didn't stop me from asking a ton of questions though. And it's always good to get the hints and tips from other people who have been there and done that. Just as long as you run everything by your oncologist first.

He might not go for it at all but ask your oncologist about acupuncture as a complimentary therapy in the aid of bone and joint pain. I'm three months past chemo and started Tamoxifen on July 1st and had some joint pain on that. I've had 6 sessions of acupuncture and there is a noticeable improvement. And I've not had a hot flush in three weeks!!!

Try to take it easy (easier said than done eh?) and mind yourself. I used to go into my chemo sessions with a written out list of questions in case I forgot anything. And my crowd really didn't seem to mind. They thought I was hilarious and maybe just a bit daft. And liked to get a clear input from me so that they could continue to tweak my tailored plan.

Mind yourself
Sarah. X

Hi Sarah
Sorry forgot reply but thank you for the tips.
First of all I'm finished with the taxol!
Of course I'm aching all over so it's not exactly finished but its such a relief. The only painkiller recommended for me is tramadol. I think It makes me a bit dopey so I'm holding out for later in the hope that I might sleep.
I also asked about the B6 and he said he wasn't convinced there was any proof it helps. I was taking it before this to help with PMT and it definitely helps with that. I also said that I used to take multivitamins before all this and when could I go back to doing that. So he said he thought there was no need but I can if I want to in a months time.
He had said no to acupuncture while on chemo. I'll be interested in that because I'm to start tamoxifen next month.
BTW, I also asked if there was anything at all I can do to help myself and he said the most important things were to exercise and not to become overweight for the future.
Re asking all the questions, I've probably been worse! I have to know the why of everything.
Goodbye to taxol but ill be back with radio and tamoxifen questions soon!
jo xx

Congrats on finishing Taxol - another step done

Taxol only treatment for me as was immunosupressed due to toxic shock syndrome post mastectomy. DC x1 was given but caused 2 recurrences of TSS! Seconed opinions very important...... Do not be afraid to seek same! I have so many regrets that I put my trust in one place. No quality of life left.

Bobbyjo
Sorry to hear you've had such a tough time.
It's hard to know what to question and what to accept when you are on this scary journey. I hope things are not too bad for you and you can have some good days.
Jo x

Hi Jo, Thank you. Forgot to say I had Rads x 15 also. Post mastectomy pain syndrome for 1 1/2 years! Just want it over soon.

Bobbyjo