Hello again. I have clear cell 2b. Had the major operation 13 days ago, and post op am doing okay I think.. I have to go to Queen Elizabeth hospital Birmingham for Chemo assessment on Friday. When I saw my consultant last Tuesday I didn’t ask him lots of questions that I should have. I know I have to have six rounds of chemotherapy. Has anyone on here had similar experience, and can advise what happens next. I am someone who is better knowing what will happen. I have been told my hair will fall out pretty quickly, so have already booked an appointment to have it cut really short this week. I am so frightened about everything now despite having had major debunking (is that the right word?) and bowel resection . Do you have any say in your treatment? I understand that I will have another oncologist at the hospital? Am reading the book how to starve cancer, quite a read.... am already thinking should I alter my diet or be taking metformin, aspirin?.. sorry for the long post but keep thinking and crying...
Thank you,
Margaret x
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Lilymay9
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Hello lovely, , well done, you’ve done the hardest bit with the surgery the chemo is intended to mop up any possible cancer stragglers post op. Your surgeon would most likely have done an abdominal wash both before and after he’d done the surgery, the fluids from the wash will have been checked out at histology alongside the organs removed, this and the actual surgery confirms the type of cancer and stage it is/was at.
You will meet up with the oncology team who will talk you through the whole process and will advise what you can expect from the chemo. You will most likely lose all your hair and you are very wise to cut it short now. If you’re planning on having a wig then I’d recommend getting one before you lose your hair so you can chose a style similar to your current colour and style. Many hospitals offer wig services for cancer patients, it’s worth asking if yours does. If not I found that simply wigs were a great online service and as a cancer patient you do not pay VAT.
You do have control over your treatment, you do not have to have chemo. Having said that I would personally recommend grabbing any options offered that can keep the bugger at bay especially given you are a clear cell lady (I am too, nearly 6 years on).
I am a great believer in eating the best and most nutritious food possible at all times but it’s particularly important now to help our bodies recover from both the surgery and the chemo, our nutrition is so important. I, personally, don’t believe we can starve cancer but there are so many differing thoughts on this and books have been written by various people who promote this course of action, there are unqualified non medical charlatans out there too who will tell you that chemo is wrong and that their way is better, I would suggest you speak with your oncologist before you make any dramatic changes to your diet and especially before taking any supplements or aspirin as they may have to factor this into the chemo plan.
I imagine you will be having carboplatin and paclitaxol every three weeks, your oncology team will confirm your treatment type and will talk you through each step of the process. They will explain all the potential side effects and how best to deal with them. They will give you anti sickness drugs and steroids to take after the chemo, it’s really important to take them and if you need more anti sickness drugs just ask. You will be tired, rest when you need to. The side effects last a few days and are cumulative but once chemo stops they gradually disappear, the tiredness lasts a while but you will get your energy back eventually. Your skin will probably become drier so a nice moisturiser is really important, there is a school of thought that wearing dark nail varnish protects your nails from the chemo a little (they’re made of the same stuff as our hair) but they likely will be affected too.
This is all so scary for you I know, you’ve been put on this rubbish rollercoaster called ovarian cancer, you didn’t want this ride but here we are, it has its ups and downs but it’s a process, we’ve all been exactly where you are at the moment, you can do this you are stronger than you think you are and if it’s any consolation at all to you take some comfort from the fact you’ve been diagnosed early so the prognosis is better.
I’m sorry this is such a long reply but I hope I’ve covered it all. Once again you really can do this, we are all here to support you and help in any way we can. Ask us any questions you like, even if they seem daft (we’ve all probably asked the same ones) this forum is full of great knowledge and wonderful people. I would recommend you don’t google this delightful disease, the information on the web is soooo very out of date and is just wrong in many cases and the statistics given will scare the pants off you unnecessarily . We are here for you through this lovely, love and hugs ❤️Xx Jane
Jane thank you so much for your reply, it means so much (I wished you lived near!,) You have given me some hope, and maybe I will be able to go through this unplanned journey and come through the other side...
I know how scary it must feel , most of us have felt the same when starting chemo . I personally felt much more reassured once started treatment . Ann has given some brilliant advice and covered most things, but any questions please ask .
I had my hair cut short prior to chemo and was fitted for a wig before starting chemo . I finished chemo last June and my hair has grown back so thick albeit curly 😊
Hi, I have had 4 chemo's (carbo/taxol) and am now having my operation in 2 weeks. Then 4 weeks grace and back to my last 2 chemo's. I am being tested for BRACA, but I personally don;t think I have it. The first chemo was worse, not knowing what to expect. But apart from aching day 4-6, I was fine. The anti-sickness tabs and steroids work fine. But chemo 3 and 4, I have really had no side effects to report. (A friend with OC, also said the same) Even after 4 chemo's I still have quite a bit of hair, although sparse in some places. I took the kitchen scissors to mine!) I enjoy going for chemo as the nurses and patients are so friendly. As I was very emotional at the beginning, I was prescribed anti-depressant/anxiety tabs which have made an amazing difference. I now feel very positive and my treatment is working well. I have also read Jane's book and it make's perfect sense to me. I have now changed my diet completely, although I will speak to my Oncologist about drugs and supplements and see what his reaction is. Best wishes to you, Jan.
Hi, I too am at the QE for chemo etc.now. I had radical debunking surgery 2018, followed by carbo platin /palitaxel & lost my hair!!! I am now on a course of carbo platin/Caelyx x6 sessions cos after 7 months the OC returned & metastasised & am tolerating the chemo
fairly well without losing my hair. I don’t know what the future will bring but I too read the book How to starve cancer & am now on Metformin, Atavastatin + other drugs. Am tolerating them quite well alongside the Chemo, keep reading the book & you will draw your own conclusions.
Hi, I went to the clinic in London & had an in-depth explanation with an Oncologist from St.Barts re the pros & cons of taking these alternative drugs for palliative reasons. After discussion with my family I decided to go ahead & so far, so good!!!!
Hello again can I ask what other off label drugs you are on please? Still considering and mulling it over,.. Feeling very low and symptomatic after first chemo,... thank you,
I have clear cell stage 3c. I wore the cold cap for chemo and kept about half my hair. Chemo didn’t work for me - however it does for many with clear cell- so I went to London for a consultation and have been stable on a clinical trial for the last 26 months. With stage 2b it is possible that you will never have a recurrence but, if you do, there are other treatments out there. Good luck with the chemo.
I am on the Patriot trial which is a phase one trial for the drug AZD 6738. There are 2 trials specifically for clear cell called Atari and Peacocc. Atari is AZD6738, which is an ATR inhibitor, plus Olaparib and Peacocc is immunotherapy drug Keytruda. There are also other chemo’s such as caelyx and gemcitabine.
Has anybody explained the cold cap to you? I used it and although my hair thinned a bit on the top I didn't have to wear a wig. The first 15/20 minutes are the worse, but if I managed to use it 17 times it couldn't have been that bad! Best wishes. ❤
You’ve had a lot of good replies here so I’ll concentrate on some practical advice for the chemo ward.
It can be chilly so dress in layers which can easily be added to / removed. I’ve even worn gloves. Take some light reading and / or a kindle, iPad, similar and perhaps a charger. It can be noisy with lots of alarms going off to alert the chemo nurses that a chemo will finish shortly and a different alarm for when it has finished, so take noise-cancelling headphones if you have them or use ordinary headphones.
If you are having Carbo / Taxol it will be a long day so perhaps some snacks you like to eat. The ward will usually provide a meal or a sandwich but they not be to your taste. I take a flask of coffee too.
Also, wear some shoes that are easy to get off and on as you probably won’t want to wear them in bed. A lot of saline is given with Carbo / Taxol to protect your kidneys and this means you have to hurry to the loo when you feel the urge. My first time I wore trainers and in the end I just couldn’t get the laces done up in time and had to run to the loo with the laces undone praying I wouldn’t trip. The nurse will explain to you how to “steer” the drip and whether it has a brake or might need unplugging from an electrical socket. Practise moving around with it rather than leaving it until you need to go to the loo, you’ll soon have passed your driving test.
Everything will seem so strange your first time but by your second cycle you’ll become an old hand. You’ll probably also make some new friends.
The previous replies have been spot on. You can do this! I finished my chemo in Sept 2019 and besides the hair loss my only lasting memory is the neuropathy. Since chemo is cumulative, the neuropathy did not show up until near the end of the 6 cycles. I would advise that you bring up the possibility with your team and inquire how to possibly stay ahead of it (doesn’t happen to everyone).
Just wanted to jump on and say welcome to the Queen Elizabeth Chemo club!
I only recently joined myself having transferred my cancer care from my local hospital which I have been using since my Clear Cell stage 4 diagnosis in Spring 2014.
And boy have we been impressed with the QE! I am under the care of two excellent lady Oncologists who job share. They are knowledgeable, caring, interested, proactive, professional and super friendly. I could go on but I think you can hear my enthusiasm.
The Chemo suite is a bit of a walk from Car Park A which is the nearest one but not too bad. If you have a Blue Badge (and if not why not?) you can park for free on levels 1 and 2. But I think the Chemo Suite also do parking passes.
The good news is your walk takes you right past the M&S Food Store which of course do lovely prawn sandwiches for your Chemo picnic. Not sure if they fit into the Starve Cancer plan but they are delicious.
The Chemo Suite is spacious and airy with windows you can see out of. The chairs are comfy recliners so brilliant for napping. The staff are lovely and really know there stuff. Plus they do not keep you waiting to long to start treatment ( 1 hour average for us so far).
Anyway if you do decide on Chemo I am sure you will be in very staff hands.
Hello Julia thanks for your reply. You’re the first person I’ve spoken to with clear cell... we went to QE yesterday and I think I saw one of your lady consultants and also a registrar, both very night nice. Probably begin chemo the week after next. I have applied for a blue badge with Sandwell but not sure how long it takes? I was thinking that I would quite like to join a support group, so will have to do some research, as to where. I’m in Great Barr.
Had my first chemo on Monday and it has knocked me for 6!!! I have been taking steroids and anti sickness but still feel really horrible. I am thinking I am not sure I can do this any more,(I know I sound such a wimp). I am seriously considering taking off label drugs, did I ask you if you did? My CT scan has been cancelled, as have all others, worrying.... I feel like I am in a nightmare of cancer chemo and Covid, and really feel sorry for all the people who are ill and front line workers.
Are you still having chemo, and how do you cope? I am 69 and ‘was’ pretty fit before all this, a big swimmer, 4 or 5 times a week 50 lengths.
Sorry to land this long feel sorry for myself email on you.
Have you spoken to the Chemo Helpline number? They are there to help you with the horrible symptoms you are having. Tell them exactly how things are and they will be able to give you advice.
Often the first chemo is the worst because everyone’s body reacts differently so the treatments have to be adjusted to you. Once this happens you will feel much better.
Psychologically chemo is of course another massive change. Give yourself time to process what is happening. It always takes me a while to get my head into the right place. It helps me to think of chemo as an unpleasant but necessary chore that must be got through if I am to get better. I try to have things to look forward to along the way from little things like a M&S prawn sandwich during chemo to a cruise to Venice next year.
Having said that the occasional good cry also helps and we are all entitled to feel sorry for ourselves after all the crap we go through. But that is the point we do put ourselves through it and we are all bloody brilliant.
Yes we are a very select crowd but there are a few of us on here.
Glad your Consultant appointment went okay. I was at the QE myself yesterday having chemo and will be there most Fridays for the foreseeable future so we may well run into each other.
I am in Stourbridge but I remember having to wait a bit for my badge.
Have you tried asking Ovacome about support groups? We have got our own Ovacome expert in the Midlands now so they may well know.
All the very best with your chemo and let me know if there is anything I can do.
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