PPC: I posted last week and now have more... - My Ovacome

My Ovacome

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Gleedy profile image
24 Replies

I posted last week and now have more information. The cancer is in my ovary and stomach lining. I've got biopsy Thursday and chemo thereafter. The prognosis is if I respond to chemo I can have surgery and I have some hope. If it doesn't respond then not much can be done. I feel more positive as I now can start my fight. I'm also still in shock and angry but will channel that anger. I'd like to thank everyone who replied to me last week. X

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Gleedy profile image
Gleedy
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24 Replies
grannylo profile image
grannylo

Hi Tracey

Another step nearer to getting some answers. Once you get your biopsy results you will know what variant you are dealing with. There are a range of treatment options depending on individual circumstances. Good to hear you are feeling more positive and hope you get a good rest tonight. Plenty of help and support here.

Loraine. Xx

Gleedy profile image
Gleedy in reply to grannylo

Thank you. It's been a hell of a day. I'm keeping positive with waves of panic sweeping over me. I have to keep positive or there is nothing. I'm doing this for my two amazing kids x

January-2016-UK profile image
January-2016-UK

Hello, I had a biopsy first to determine exactly what kind of cancer as an operation wasn't possible because of the size of the tumour(s).

I have to have three cycles of chemo first and then an operation if the tumour(s) had shrunk sufficiently. If shrunk but not quite enough, then a fourth cycle would be considered.

It's my understanding that other types of chemo drugs are in the background should the tumour(s) not respond to the initial treatment (Taxol/Carbol) so keep feeling positive.

My diagnosis from the biopsy was ovarian carsinosarcoma and from the scans, Stage IIIC.

Good luck for Thursday.

helen xx

in reply to January-2016-UK

Hi. We're in the same boat. I will have rounds of 3 carboplatin and Taxol followed by debunking surgery then 3 more carbo and taxol. So far so good. 2nd chemo surprisingly easy to handle apart from a big scare when I reacted badly to Taxol. I am determined to beat this as I'm sure you are. Take care, stay strong. Love and prayers to you. Xxx

January-2016-UK profile image
January-2016-UK in reply to

Hello, what happened when you reacted badly to the Taxol? I suddenly came over strangely whoosey and had to take a sip of water. Is Taxol the one that takes 3 hours? Helen xx

in reply to January-2016-UK

Yes, Taxol takes three very tedious hours! It was the weirdest thing ... After about 3 minutes my palms started to itch, then the itching spread up my arms and all over my body. Then I turned tomato red ( not very attractive!) It all happened so quickly, even before I had time to panic, the nurses and 2 oncologists appeared, shoved a load of meds in the drip, told me a reaction like this was to be expected, don't worry etc. They were wonderful. Stay well and strong.

January-2016-UK profile image
January-2016-UK in reply to

I've noticed the nurse sits with you when that one first goes in. That must be why. I am much more relaxed this second time now I know what to expect. I am just begging to experience some pain in my ankles but I know now it will get a lot worse and then slowly die away.

Take care, all the best.

January-2016-UK profile image
January-2016-UK in reply to January-2016-UK

Meant "beginning" rather than begging.

nettieanne profile image
nettieanne

My biopsy also diagnosed 111c serous carcinoma I also had 3 X taxol / carbon then an operation and then 3x further taxol/ carbo I'm now 6 years on after being told I only had a5 year prognosis , so keep positive and make sure u eat. Nf drink well good luck annette

in reply to nettieanne

Me too! Just had second carboplatin and taxol session. Bald as a coot, down 6kg in weight and feeling a lot better than I imagined I would. Debulking surgery after chemo 3 then 3 more 'cocktails'. Determined to beat the 5 year prognosis as I know you are. Take care and stay strong. Love, prayers and positives vibes to you. Xxxx

January-2016-UK profile image
January-2016-UK in reply to nettieanne

Is that six years with no further treatment? That's brilliant. Still positive and hungry! All the best.

Gleedy profile image
Gleedy

Thank you. I had the fighting spirit last night but now feel very low. I have all the usual anger feelings but also very scared and what if I don't respond to chemo. I know I've got to overcome all of this and just believe it will work. It's so surreal. X

in reply to Gleedy

My mantra is never ever give up so please adopt that. You can get through this. Until you get the results of the biopsy the oncologist are not sure so sometimes they give you the worst scenario or sometimes that is what we hear. You start your chemo with the idea that it is going to help you. No matter how bad you feel on the off days things will get better. I am on the road a long time now so long I am beginning to torment the doctors haha.

Gleedy profile image
Gleedy in reply to

Thank you. I won't stop fighting x

Leeds2015 profile image
Leeds2015

Hello. At least things are clearer for you now. You know the plan of attack. As you get your chemo juice, if it is working then your ca125 is likely to decrease after each course and they monitor this taking bloods a few days before each treatment. So you will know the chemo is doing its work. So what are you going to do with your hair? Maybe time to keep yourself busy doing some positive things you can take control of. Have you thought about a wig? Get a few nice scarves etc. See if your local Macmillan centre has a hairloss support clinic, they may also offer free complimentary therapies. Also see if there is a Look Good, Feel Good day anywhere near you - this is the charity of the makeup industry and is a session on applying make up etc and you get a bag of freebies.

Get preparing for chemo, maybe do some batch cooking for the freezer so you don't have to think about cooking during treatment if you don't want too. I am just coming to the end on my freezer stock that I prepared before my op.

How old are your children?

Gleedy profile image
Gleedy

My children are not babies. My son is 24, a teacher and lives with his girlfriend. My daughter is 21, a legal secretary and lives with me. She is in bits but has also been my rock but she should not have to take all my crying. Even though they are grown up they need me. I really can't face work mentally today so I am at home. It looks like a spring morning but I'm not feeling it. I do need a kick up the backside to cheer up. Thank you for your advice. Can you get wigs on NHS? My daughter and I have been looking at some to buy.

Julie40 profile image
Julie40

We can all empathise with how you're feeling so you're in the right place for support. I know only too well all the emotions you're feeling but you have to channel that anger into fighting spirit. I too have stage 4 PPC and within days of diagnosis told I had weeks to live. That was back in Mar 14. I responded really well to the chemo and managed to get surgery followed by more chemo. I've even managed a year free from

Treatment. Everything is possible and as long as you have hope and faith you can fight it. You have a plan so focus on making life as easy for yourself on treatment as possible. There will be a lot going on and you will have ups and downs but make good of the time when you're feeling better. Someone suggested that I kept a diary during treatment of how I was feeling. That helped me get a routine and know when to make plans and enjoy good days.

You can get a wig on NHS. Alternatively you can the voucher towards a more expensive option. I did this but ended up wearing headscarves majority of the time because the wig used to drive me crazy. You will definitely need headscarves. I ended up with a load of them in different colours. Stick to cotton as softer against your skin. Christies were I am treated have a dept for this maybe your hospital will too. Use your time now preparing for the chemo and the changes in your physical appearance (hair loss) as that can get you down a bit. It's amazing though how quickly you adapt though.

The shock and sadness will settle, the tears will lessen and you will come out fighting. Good luck for your treatment.

One day at a time, try not to think too far ahead.

Don't forget we've seen and done it all on here so there will always be somebody that can help you with info or just a virtual hug.

Xo

Gleedy profile image
Gleedy

You helped me last week and have again. I will get strong. I've had a lot of knocks in life but nothing can compare to this. If I don't have faith and fight then I have nothing and that's so not true. I hope you can keep treatment free. Xx

thesilent1 profile image
thesilent1

It will take you a while to come to terms with your condition so be kind to yourself. Don't expect too much when you start chemo, remember, if you feel tired the a nap. Yoiu have a good positive attitude which I firmly believe helps. Some good movies, perhaps a new crafting hobby (YouTube have some great tutorials) I have learned how to crochet and this week I am attempting patchwork and am really plkeased with my efforts lol.

Wishing you all the best for your biopsy a and treatment. Ann xo

Gleedy profile image
Gleedy in reply to thesilent1

Thank you. I've just sat and emailed all my class's work today for cover teachers and strangely feel calm at the moment. I am creative and it might be the time to get my old cross stitch unfinished works out! Is it possible to work when on chemo? Teaching is quite demanding but I've said I'll give it a go. Am I being too ambitious? Anyway, off to shower now before going for biopsy,

x

thesilent1 profile image
thesilent1 in reply to Gleedy

Chemo is tough. Teaching, although rewarding is tough too. My oncologist advised me to have NO stress. To be honest, this is the time for you to look after number one. Chemo has its side effects, you might be one of the 'lucky' ones who is not affected by them, personally, I couldn't have worked even if I'd tried as I suffered quite badly and was literally off my feet for a few days with pain in my legs about 3 days after treatment and with the mouth ulcers I developed I wouldn't have been able to speak to anyone. I'm sure you would be entitled to sick pay in your profession so why not just use this time for you to fight this disease. You do not need any added stress in your life whilst doing so. Also, chemo has a cumulative effect, the further along in your treatment you get, the tireder you become. As my oncologist said to me when I asked her about work, "you have a big enough task in hand without making it more difficult. You are entitled to sick leave and pay in your job, why would you not take it? "

Good luck for today. Thinking of you. Ann xo

Gleedy profile image
Gleedy in reply to thesilent1

Thank you. It's really what I wanted to hear. I couldn't cope with both. Unfortunately I'm in a private school now so no obligation to pay more than SSP. I am looking into benefits x

thesilent1 profile image
thesilent1 in reply to Gleedy

Yes, you should be entitled to something. x

HogwartsDK profile image
HogwartsDK

Hey Gleedy,

I am currently half way through my Chemo and am working about half the time! It's for my own mental health more than anything else! I have to drive to work so don't tend to go in for week after treatment as I don't feel safe driving! My job is office based but very busy, teaching is different but you will know what you can do yourself! For me I waited until I had one cycle over to see how it went before I made any decisions but the important thing is to listen to your body and rest rest rest!!!!

Good luck with everything!!

DX

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