Newbie chemo advice.?

[Carole666]

Hi

Newbie here. Just had pathology results following 1c cyst removal and total abdo hysterectomy. Due to meet oncologist to discuss chemotherapy next. Any advice??

CAROLE

[Shellygirl]

Hi I've had 1c clear cell carcinoma. Just had my fourth cycle of chemo carboplatin and taxol. Best advice I've got is its not as bad as I expected. Everyone is different and side affects we experience are also different. Try to plan activities when your well I start to feel better on fourth day after chemo, you will find your on pattern. Best of luck and big hugs 😃😍

[Carole666 in reply to Shellygirl]

Thank you Shellygirl xx

[Caroles1]

Hi Carole, from another Carole who had 1c!,diagnosed in August 2014,finished chemo March 2015,Shellygirl is right it isn't as bad as you think it's going to be

Yes you do get tired,but be kind to yourself,never feel guilty about having a nap and if you get offers of help and support,don't be afraid to take people up on it.

When you go for chemo,wear comfy clothes,lots of layers as you can get cold and plenty to read,or music to listen to as it can be boring.

I decided not to go for the cold cap,so I lost all my hair,it will start falling out after the second chemo,so if you decide to go butt naked like me,my advice is to choose your wig or head covers before you start chemo and shave your head when it starts falling out as it's less traumatic.

Also,if you get the chance go on the organised make up workshop as you get amazing freebies and advice.

I didn't really have many side effects,but if you want advice we are all here to give it,encouragement too,you can do it and you will get through,you have got through the worst bit and now you are on the home straight,so it won't belong before you start to feel better,

Keep in touch,

Carole xxx

[Carole666 in reply to Caroles1]

Thank you CAROLE xx

[mary1111]

If he offers you taxol as well as carboplatin, I would query with him whether you actually needed it. Chris Woolams on the canceractive website says that research in USA shows that taxol is only 3% effective in breast cancer and it is the taxol that has the worst side effects including hair loss. No research on ovarian but you have early stage. Also, what grade cancer did you have, low or high? I had low grade 3c 4 years and refused any chemo. No recurrence.

canceractive.com/cancer-act...

[Carole666 in reply to mary1111]

Thank you... Something to think about!

I am low grade

[mary1111 in reply to Carole666]

Definitely do some research on low grade cancer and how ineffective chemo is. My oncologist was quite happy for me to have no treatment after op once I mentioned that I didn't want to go down that route. What I would also say is that I believe that dairy particularly yoghurt, gave me ovarian cancer, so I would recommend removing that from your diet. Have a good browse on the canceractive website as it is a brilliant resource.

[bibs73 in reply to Carole666]

There is new info about low grade and in the States some of the ladies are not getting chemo but hormone blockers instead. There is lots of discussion on it at the moment on the US equivalent of this site.

Might be worthwhile chatting to your oncologist about the recent research.

Hopefully I'll attach the link to the paper

medpagetoday.com/clinical-c...

The US site is Inspire and there is a subset for low grade.

I have low grade but advanced and I'm trying to get my oncologist just now to prescribe for me.

And ps I agree with Mary, changing my diet has had huge benefits to me. I had very little chemo side effects and I put a lot of that down to diet.

Very best of luck

Mxx

[Carole666 in reply to mary1111]

Thank you xx

[TheOvacomeTeam Partner]

It is important to discuss your treatment with your oncologist as only they know the exact details of your case as they may be very specific reasons why you need a particular treatment.

During chemotherapy try to stay away from crowds and people with colds etc. Break up the sessions so you have something to look forward to. Plan to do something you enjoy just before your next cycle of chemotherapy when most people feel ok. Not everyone will get all the side effects that are mentioned most people tend to get some but not all the side effects. It might be helpful to take someone with you - if you are allowed and there is room, check first- for support but also take some magazines, music etc - nothing to heavy- to help pass the time.

If you would like to speak to our support line nurse for further help and advice do feel free to give them a ring on 0800 008 7054 Mon-Fri 10-5

Wishing you all the very best

The Ovacome Team

[Elaine2016]

Hi. I was diagnosed with 1c clear cell last August (2015). I also had the full TAH surgery to remove the tumour. I was started on Paclitaxal / Carboplatin but had to stop the Taxol as developed Peripheral Neuropathy by the second dose. Carried on with 6 cycles of Carbo. I found side effects were very mild. In my case only constipation which was quickly resolved with Movicol powders. I found that walking outside as many days as you can helped a great deal. I had steroid munchies and gained weight but better that than no appetite. I worked from home during all my chemo and kept people outside of the family away if they had family with colds etc

We made visitors wash hands and remove shoes on entering the house, which kept me out of hospital with infection.

If you feel sick, Ginger cordial works great!

My cancer came back within 4 months in my Peritonium and nodes, so now just started on Caelix chemo. We hope to see its working after 3 cycles.

I ended up in hospital last week with shortness of breath, high temperature and no appetite. Got myself some blood clots to share the journey. Now have to inject myself daily to keep the little blighters away!

Hope some of this helps, even if I ramble!

Take care, X

[Carole666 in reply to Elaine2016]

Thank you xx

[Sunfleury-UK]

Hi I was a 1c grade 1 mucinous type 4 years ago. Initially I was told I would have both carboplatin and taxol but when I saw the oncologist he said just carboplatin for me... There are some different approaches to low grade and also low stage amongst teams but the type is also relevant ( & as commented above, you will have individual circumstances). NICE guidelines for stage 1s are different to other stages and you can find them online.....

Depending on the outcome of your meeting, you'll find lots of threads on here for advice and helpful suggestions if you need chemo, just use the search box above... 'Chemo tips' will generate some great suggestions!

Best wishes, Sx

[Carole666 in reply to Sunfleury-UK]

Thank you x