Chemo Paclitaxel & Carboplatin

Hello Sue

I am really sorry to hear your history, you have had an awful lot going on, and my sincere condolences on losing your husband.

At diagnosis I had local lymph nodes involved and a spot on the lung.  I had six cycles over six months of carboplatin/paclitaxol in weekly treatment for three weeks and then two weeks off.  At the same time as getting the chemo, I was given steroids to counteract any nausea and the effect that had was to keep me wide awake that night, it wasn't unusual to find me doing housework or a pile of ironing and 2am in the morning!  I tolerated this regimen very well, and have been left with some minor neuropathy in my feet which hasn't been a problem at all.  My feet get very hot especially in bed, but I just stick them out from under the duvet and they are fine.  I did lose all my hair but found a wonderful seller on Etsy, https://www.etsy.com/uk/shop/BeautifulYouuHats? who made me hats in a selection to match my outfits. I had tried others and they were like swimming hats, tight and uncomfortable, and these were very soft and easy to wear.

In the early days I was terrified of even going to see the chemo ward and refused to see it before treatment started.  However, my fears were totally unfounded, it was totally not what I expected, there was a lot of laughter and chat between patients and the nurses and the light lunches they served were wonderful.. I went armed with my Sudoku book and a newspaper and although each visit was never less than three hours the time passed really quickly and I was never bored.

My oncologist told me that carboplatin/pacitaxol is excellent at if not eradicating the cancer, giving really good long-term control.  It is a big decision not to go ahead, but I think the thing to bear in mind is that no one is going to force you to continue if you start and decide further along the line that it isn't for you.

If there is anything else I can help with just ask.

Sending you a big hug.

Irene xx

Hello Irene,

Thank you so much for your kindness in replying. It helps to hear from someone who has had the same treatment. My Oncologist has been very good with me totally understanding my concerns esp with my other health conditions of Severe COPD , Paroxysmal Atrial Fibrillation l, Glaucoma and other minor issues. So far now I’ve decided to give it a try and telling myself I’ll be fine as I was following the Intense long course of  radiotherapy . Yes that left me with lasting problems but nothing I can’t deal with and life is relatively good thanks to family and friends support.. 

Did you consider either alternative or complimentary therapies ?

Lovely to chat Irene, thanks for the hug and the link for the hats ! 
very best wishes to you

Sue x

Hi blygirl,

I'm so glad Irene has weighed in with practical comments. Just wanted to say I'm so dang sorry about your husband. What a terrible few years. 

So glad as well that you have a great doctor and support people.

And us!

Please keep us posted.

Hugs

suz

Hello Suz, thank you for your reply and concern. Yes it’s been a difficult 4 years. Everybody tells me what a strong person I am to have coped with it all . You just have to get on with what’s thrown at you. There’s always someone who’s dealing with a lot worse . As you say Suz, having good support and friendship is so needed although at times I have to withdraw a little as I  don’t always want to communicate. My friends and family know and understand . We all deal with things in a way that works for us.

Thank you Suz for replying. It’s good to chat with people who are going /gone through the same. 
nAm sure we’ll chat more.

Take care 

Sue x

Sue,

I too have atrial fibrillation and the chemo didn't affect that at all.  If you are on anticoagulants for that they may give you self-injecting anticoagulants instead, which you inject into the stomach.  It sounds awful but it really isn't painful at all and I very quickly became used to that instead of taking Apixaban.  When I started treatment, the pharmacist checked all my supplements (I take quite a few) and told me to stop taking them.  I thought it was a bit strange, but when I checked with the oncologist, she said whilst there has been no definitive studies, it is recognised that some supplements do help with cell renewal and  they don't want that during chemotherapy.  They will keep a very close eye on you with your other health conditions too and make sure that you don't have (lasting) side effects.

Apart from that nothing else, although my treatment was during lockdown and nothing was open or available anyway.

Supportive family and friends are just the best, aren't they?  My daughter ordered me very soft eyes pencils that I could smudge around my eyes when I lost my eyelashes and showed me how to finely pencil in eyebrows - it made such a difference to my wellbeing, absolute vanity, I know, but I make no apology for that!

I am so happy to hear you you have decided to go ahead, please come back and let us know how you are.

Irene xx

Thank you Irene for the reassurance re the Atrial Fibrillation. I declined the strong anticoagulants at the time of my 2nd hospitalisation with it . Think it was Rexoban or something like that. Like you I take some supplements and will advise tge pharmacist of them and see what they say. I have osteoporosis too and that’s been a bonus as the medication I take for that means I don’t need the injections.

I will get back to you when I start treatment . I don’t know if to get hair covering /wig before I lose hair or wait and see what happens. 
Do you have any advice on that Irene ?

Thank you so much for taking time out to reply to me, it is very kind of you . Sending love, Sue x

Hello Sue

I have calcium tablets prescribed and I could continue to take those during treatment, in addition to bisoprolol and flecainide which I only use when I have an AF episode.  Interestingly, I only had one episode during more than a year of treatment, I hope that it is the same for you!

I had my hair cut short in preparation prior to starting chemo.  My husband had bought a camper van when I was diagnosed so that during the two weeks off treatment we could take off and I could be safe.  We had a wonderful time in Scotland (I'm Scottish) and at one campsite just after the first cycle I used the showers and my hair started falling out in clumps.  I realised a more drastic haircut was needed and my husband found out that the lady who ran the campsite used to be a hairdresser. She ushered me into a private room and gave me a crew cut, with a huge hug at the end and wouldn't take any payment, just said come back when you are healthy!  I was overwhelmed by her kindness, actually not just with her but at restaurants and other places the owners were more than happy to make sure I was isolated as much as possible.

I bought a very expensive wig in preparation, but I hadn't reckoned on trying to wear it during a hot summer.  So I never did, I just wore the caps.  The Etsy seller was happy to make them in specific colours when I asked and didn't charge any more than the normal price.

I would buy a couple of caps in preparation and maybe have your hair cut very short?  For me, it was far less upsetting than seeing my longish bob fall out.  Only my own experiences, mind!

Love to you too, Sue

Irene x

My hair didn't start falling out until I was in recovery. I'd cut it short in anticipation, but when I started finding it all over my pillow I said 'Eff it' and got a crew cut. I loved it! I'm more like Shirley Partridge now, but it's lovely to know that after a lifetime of long locks, now I can buzz it down whenever I like and have zero hair concerns.

Hugs

Suz

Hello Irene . Thanks for your reply. I have been thinking of getting my hair done . It’s not long more of a bob , longer at front than back. Maybe then I can prewarn my hairdresser in case I need something more drastic !

We are on similar meds Irene for the AF. Mines Bisoprolol . Amlodipine and Aspirin all taken daily. Bisphosphonate (risedronate) weekly and Calcium  & Vit D twice daily for Osteoporosis.

Ive been looking at scarves and hats and will probably order a couple beforehand to see how I go.

Ive looked at the cold cap but I don’t think I fancy that. Sounds a little uncomfortable and very cold for me. Ice cream often gives me brain freeze which I wouldn’t want !

Your Husband sounds lovely and was/is obviously such a support to you. I miss my Derek whose Mother was Scottish. She hailed from Paisley and we have had some lovely holidays in Bonnie Scotland

Thanks again Irene for your kindness.

Sue x

Hi Suz,

From what I’ve read the hair loss is very soon into treatment with this Chemo treatment so I guess it came  as a shock when yours didn’t start to fall until you were in recovery. That’s a bit ofdowner ! Brilliant that you loved  your new style though ♀️ 

Thanks again Suz , your replies and Irene’s are a massive help at this time ! 
Sending lots of love across the pond   Sue x