Weekly taxol.

[Suzanne333]

Hi lovely ladies.

I’ve read (and here’s hoping) that you don’t always lose your hair on weekly taxol. Is this true?

I’m expecting to lose my hair but maybe I won’t.

Hugs to all you ladies xxxx

[Pishi123]

Hi

I just wanted to say how much I enjoyed reading your poem.

Thank you and best wishes to you.

Angela

[Suzanne333 in reply to Pishi123]

Hi Angela. Aww thank you and I’m glad you liked it. 👍🏻

Hope all is ok with you xxxxx

[Salmon45]

Hu Suzanne i have lost alot of mine. It is very thin and the wig is due to come out very soon 😢 I expected to though so not to distressed. I have heard that some don't though so fingers and toes crossed for you lovely lady xxxx

[Suzanne333 in reply to Salmon45]

Hi.

Aww I’m

Sorry about your hair. I think I will lose mine too. I’ve lost it three times so it won’t come as a shock but would love to hang onto(what’s there)

Sending you a big hug. Xxxxx

[Salmon45 in reply to Suzanne333]

I agree 😃 sending big hugs back to you too xxx

[Yoshbosh]

Hi Suzanne,

I’m also about to start weekly taxol 😢 I’m going to try the cold cap - is that an option at your hospital?

Good luck!!

Vicki xxx

[Suzanne333 in reply to Yoshbosh]

Hi Vicki.

Aww. Hope you get on ok with it. I’m ok on it. Get a little tired but that’s all.

They don’t do the cold cap st my hospital.

Let me know how it goes. Will be thinking of you.

Big hugs xxxx

[Emalou71]

Hi Suzanne, I was told the same and had hoped I would be one of the ones who kept her hair..... But I've just finished a cycle (3 lots of weekly taxol and BOS drug) which does include the trial drug and since Wednesday my hair has just been shedding its every where 😧 I did think this was a bit quick to be honest and did expect if there was to be hair loss it would be much later down the line, maybe the trial drug has had a hand in speeding things up. I'm a bit gutted that in about a week I'll probably be bald again but what can you do eh?

There is another lady who is having the same treatment as me and she's just finished 12 weeks of weekly taxol and hasn't lost her hair, so I will keep my fingers crossed you keep yours. Hope you doing okay?

Big hugs xx

[Suzanne333 in reply to Emalou71]

Hi

Aww sorry about your hair. I’m expecting to lose mine again so will be a bonus if I don’t. Will see how it goes. I won’t shave it off until I resemble a manky cat.

Hope you are doing ok. Sending a big hug to you xxxxx

[Emalou71 in reply to Suzanne333]

Lol that tickled me manky cat 😀 I'm doing ok thank you, really tired but can manage that really day to day apart from that I'm doing ok xxx

[Janet235]

Hi Suzanne...I found the weekly taxol easier to manage. My hair thinned slowly but remainder continued to grow...

at the end though it got shaved off - a comb over too far!! - and now 6 months later I have a short curly pixie crop ( thanks to cisplatin!)

However over the weeks of taxol treatment the neuropathy got worse and I got finger nail lifting which were harder things to deal with

neuropathy still with me, no better no worse but nails finally subsiding back into a more normal position.

Hope it works out for you...

Janet x 🌈

[Suzanne333 in reply to Janet235]

Hi Janet.

Aww sorry about your hair and your fingernails. That must have been horrible.

I hope your neuropathy starts to go away.

Sending you a big hug xxx

[AlaNtO in reply to Janet235]

I got onto this site by error but still a chemo patient for angiosarcoma on face. The neuropathy is not well communicated by oncologists. The inability to pick things up with fingers and the coldness of the fingers can get to you. The feet are worst. It may make you lose your balance and fall which is a bad thing for women and men. There are exercises that can help - but on chemo one does not always want to do them.

[January-2016-UK]

I lost all of mine.....

[Hidden]

I had taxol with carbo for first line - my head hair thinned a lot but I didn't lose it all (looked quite fetching wisping out from under a black beanie, though I do say so myself!) but lost all hair from everywhere else!

Good luck for the new treatment, Dawn

PS can't wait for the next poem

[Suzanne333 in reply to Hidden]

Hi dawn.

It’s goid when the hair goes from everywhere else. No more leg shaving. It should leave us with head hair and eyelashes and eyebrows.

Aww I’m glad you liked my poem. I’ll write another one soon.

Hope you are doing ok.

Big hugs xxxx

[BeeWild]

Hi Suzanne I’m on week 6 of taxol and have been using the cold cap so still have my hair x what a shame they don’t have it at your hospital!

Good luck with the treatment and keep those poems coming they’re fab xx

[Suzanne333 in reply to BeeWild]

Hi

I’m glad you liked my poem. I’ll write another one soon. 😀

Yes it’s a shame about the cold cap. I might make my own. I’ve thought about it before. I’ll get a swimming hat and put ice cubes under it. It might work. Lol.

I hope you are doing ok. Xxxxx hugs xxxx

[Maus123]

Just wanted to wish you luck with the weekly Taxol, Suzanne. Xx. Maus.

[Suzanne333 in reply to Maus123]

Thank you Maus. Hope you are doing ok. Hugs xxx

[Kryssy]

I'm wishing you the best of luck too with the Taxol. I can never have it again but I did lose my hair after just one dose. It has grown back curly which I quite like but my leg hair came back so thick that I looked like an ape. Hubby has just treated me to an early birthday present - a Smooth Skin Muse. It will remove my hair leg forever, with a bit of luck. Done two treatments so far and hope that by the time I'm done in another 10 weeks I'll have smooth legs forever. My pubic hair is very thin and straight now - weird - and the downy hair on my arms never came back. So, it seems we are all different - again. I only wore a wig twice and then ditched it. If people were offended by my baldness then stuff 'em. My family and friends didn't bat an eyelid and I even got compliments about how lovely the shape of my head was. Well, I'm just repeating what they said but I did notice that it wasn't knobbly or marked. Who would have thought that my best feature was my bald head

Fingers crossed you don't lose your beautiful hair but it sounds as if it's on the cards. A small price to pay if the taxol does a good job for you. Bonne chance lovely xxxxx

[Suzanne333 in reply to Kryssy]

Hi Kryssy.

Thank you for your reply. I hope you get on ok with the leg treatment. I hate shaving my legs so I’m quite looking forward to not having to. Arm pits too. I even lose the hairs up my nose. Lol. People tell me also that I can carry off the bald look. I don’t like my ears though. One of them looks a bit deformed where I pierced it 6 times when I was a teenager. That’s why I always had long hair. To cover it up. Now it’s there for all to see.

Why can’t you have taxol again? You probably told me but I am suffering with chemo brain. I’m forgetting so much. Feel like I’ve got dementia. Another chemo gift. 😂

I’m hoping taxol works. I think my consultant is hoping to put me on niraparib after taxol. I’m already worrying that that won’t work.

I think I’m seriously going to buy some cannabis oil. The illegal stuff. It might help my hair grow too.

Wishing you a happy weekend Kryssy.

Lots of love xxxxx

[Kryssy in reply to Suzanne333]

Good morning lovely. I am not going to frighten you about the Taxol because I am a very unusual case and the medics had never seen a reaction like it, so don't worry. The day after my first dose last August my finger tips started to tingle and it just got worse and worse until by day 3 I was totally paralyzed from ankles to hips and hands to shoulders and in the most awful pain possible. Was in hospital for a week and even the morphine 24/7 drip couldn't shift the pain. I couldn't walk or hold a cup and by mid week I just wanted hubby to let me go as I couldn't stand the pain any longer. My body was on fire. In fact, I said it felt as if someone had set light to me. I was told that never ever could I have Taxol again and that there was a chance that I would never recover from what had happened. Obviously they don't know me very well. When I came out I started on L-Glutamine and Alpha Lipoic Acid and gradually the heat went, the numbness went and slowly but eventually I was fully working again with no neuropathy at all. I was on morphine patches for about two months before they risked stopping it to see if the pain came back. It didn't. Perhaps you could get some in. My oncologist approved them as he said I should try anything which may help. However, the weekly carbo I was having did make the fingers and toes tingle a bit for a couple of days but it wore of. It's the same now with carbo/caelyx. Tingling for a few days then it wears off. I do take the amino acids the day before and a few days after the chemo and I'm sure it helps. Doc said that caelyx is in the same family as Taxol and after my first dose he kept a close eye on me but I was fine - ish.

My hair is still ok even though there is a small chance of losing it or it going thin on the caelyx. It grows quickly too. I lost my nose hair on taxol but not my eyelashes or brows. In fact, my lashes grew longer and curlier so I bought a mascara to highlight them behind the glasses. When all chemo finished in January, my eyelashes fell out. Now they are short, stubby and straight again. I've got white facial hair which I can see but hubby says no-one else can. Unfortunately, the Muse doesn't work on white hair otherwise I'd be doing my chin.

There are many girls who sail through with Taxol and never get neuropathy or other side effects. Who is to know how we are going to react to the toxic waste they pump into us. It's such a shame that you may lose your hair again. Some pretty summer hats are on the cards. I was bald through autumn and winter so knitted an outrageous pink fluffy hat with long tassel things like droopy ears and coloured balls on, just to go out in. I got some lovely comments when wearing it and the nurses on the chemo ward loved it, especially as they saw me knitting it with hands that barely worked properly (at that time). I bought two wigs but didn't bother with them. One has never come out of the box. I sent for half a dozen cheap turbans from China too.. All very pretty with sparkly bits or furry embellishments but only one ever saw the light of day. I had to wear something outside as it was so cold and a little woolly hat at night-time. I don't know how bald men cope.

Send you so much love and hope that very soon you'll be over all this treatment and being fit and well. I hope your partner is coping too. This must be a blow to you both so you need to be close now. Big hugs. Kryssy xxxx

[Suzanne333 in reply to Kryssy]

Hi Kryssy.

Wow that was a bad reaction. Thank goodness you recovered from it. How scary that must have been. Painful too.

I had a reaction to carbo. Not like what you had though. Although due to the desensitisation not working, I can’t have carbo anymore. I don’t know what I’d have if this taxol doesn’t work. I know I’m supposed to get niraparib after the taxol (if it works) maybe I shouldn’t think about it.

I do have many bandanas to wear. They’re kind of my trade mark at work. The students compliment me on them. One calls me a pirate. Lol. I don’t wear my wigs often. I have a long blonde one similar to my real hair (as it was) and a bob wig. Not keen on the bob as I think it makes me look like my mum. Lol. It’s slso a bit thick so I look like a mushroom head 🍄.

I hope you and hubby have a great weekend. We might be watching the England game. We never ever watch any football but I guess this match is important.

Come on Sweden 😂😂

Take care lovely lady.

Lots of love xxx

[ScardyCat40]

I started losing my hair after 3 weeks

[Suzanne333 in reply to ScardyCat40]

Aww I’m glad xpevfing to lose mine. It’s still tightly in my head st the moment but I know it’ll change. Xxx hugs xx

[DeeLee1705]

My Mum used the cold cap on her treatment (monthly) thd first time round, her hair only thinned (she did have her hair cut short) she would recommend again and persist through the uncomfortable stage with the cold cap ... if it’s an option .. it’s worth s try 😊

[Suzanne333 in reply to DeeLee1705]

Hi Dee.

I wish it was an option. They don’t do it at my hospital. I wish they did.

Hugs xx

[storm2312]

i shaved all of my hair off i was not going to lose it to chemo i finished treatment in march and i now have a full head of hair again xo

[Suzanne333 in reply to storm2312]

Hi

I finished chemo end of Feb this year so have short but nice hair too. Just don’t want to lose it again but guess I’ll have to. This will be the fourth time in two years.

Hugs xxx

[KBM22]

Hi Suzanne

I’ve been on taxol weekly at end of 2nd cycle and have been cold capping so kept hair on head although thinned. But I’ve also still got my eyebrows and eyelashes which obviously I haven’t been freezing! ... although I certainly haven’t had to do any plucking since started! Hair has def thinned everywhere else. My consultant said weekly could be much kinder re hair loss so fingers crossed this happens for you! X

[Suzanne333 in reply to KBM22]

Hi

I’m glad you’ve not lost your hair and it’s only thinned a bit. This is the third lot of taxol for me. First line was three weekly as was second line. I chose weekly this time. I’m expecting to lose my hair. Wish my eyebrows and eyelashes wound hang around though.

Sending you a big hug. Xxxx

[Maxjor]

Hi Suzanne--I wish I could say its a possibility but they say it is the taxol that makes on lose your hair, not the other agents when they use more than one. Guess its better to be prepared. The weekly doses are lower, but I think its the fact that its every week that keeps it relentlessly going after the hair (and the cancer-don't forget that!). You do look beautiful, hair or not, and I would think your ear gives you character! And what the heck-put a nice earring in that spot (if you can due to the old holes) and let that be the centerpiece for discussion. If you do start to lose it, there are really nice scarves and hairbands out there that can compliment your looks if there are days you prefer not to walk around with bald head look. Not to hide it, but to give you something when you feel you need it (IF it happens). Wishing you luck Suzanne. Time to knock the beast back for a very long time! oxoxox Judy

[Suzanne333 in reply to Maxjor]

Aww thank you Judy.

I’m accepting that it will fall out again. I worry it won’t grow back but it has done the last three times. I don’t like it when your head gets really tender. Then I have to shave it off to get rid of that horrible feeling.

I’m hoping this horrible disease will leave me alone for a while. Even a year. Get fed up of it.

It seems to like me. Lol. I read somewhere that ginger powder is good for ovarian cancer. I might start drinking it. Might settle my tummy too. Lol.

I hope you are ok.

Sending you lots of love xxxx

[Welshandproud]

Mine went very thin and grey but I didn't lose it completely. I hope you're the same xxx

[Di16]

I was told to expect to lose all my hair, but didn't, though it did get thinner. Di