Update.Can't believe its mid October. - My Ovacome

My Ovacome

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Update.Can't believe its mid October.

julie93 profile image

Sorry have not been posting ,had an incredibly hectic summer and then at the end of it was quite ill.

During the summer ,after getting back from Wales, I had a lovely time . The girls were back from uni and friends and family came to stay.

.I also went to the Marsden, with chemo looming I wanted more options.I was put on Letrozole, we agreed it was worth a try.Apparently it works for 20% of women .It made me sweat like never before! Didn't work either, but I am glad I tried it. The prof had 3 different chemo options for me, my local was just offering one(toptecan).The option I favoured was weekly Taxol.The good news is that when I discussed this with my local oncologist, he agreed it was a good option and found a way for me to get it( apparently problems related to the PCT and the NICE guidelines).

Meanwhile I was Ok, but tired and starting to slowly lose weight.I had an apppointment coming up the following week and was sure I'd be back on chemo.

Then , quite suddenly, on 31st of August, I started vomiting.Got admitted to hospital that evening.Put on a drip.Lots of different drugs were tried to stop the vomiting, Nothing seemed to work.After 5 days of this they found the right combination ,given via a syringe pump.I slowly started to eat again and came home on 8th September.

I had lost loads of weight(went down to 6 stone12lbs) and was just so exhausted(still am, but it is improving).

Then , a week after that I started back on chemo!So I now have those side effects to contend with aswell.

Its a very hard slog but am making some progress.

Weight up to 7st8lbs, ca125 going down and came off the anti sickness pump last week(replaced by tablets).

I feel lucky to be here and also grateful to my wonderful family and friends ,who helped and supported me through the worst bits.I have been fighting OC for over 4 years now,the last few weeks has certainly been the toughest ever.

Julie

20 Replies

Hi Julie,

Oh this sounds horrendous...what a terrible time you've had...I am glad your weight is going in the right direction you must have been so scared...vomiting is such a terrifying experience on it's own...I am glad you feel up to blogging now...I have read that weekly taxol is more successful and I do hope it will be for you...what a palaver you have had with your local oncologist it is a good job you went to the Marsden sending you my love and best wishes x G

julie93 profile image
julie93 in reply to

Hi Gwyn

A lot of the time in hospital I can't remember, which is a blessing. Starting to feel better now.,actually today I feel good but i have chemo at 1.30!

Juliex

in reply to julie93

Hi Julie,

I will be thinking of you today on your chemo.... but will this be every day at 1:30? how long does the chemo take? and how many weeks ? ...I never stopped thinking about you and your girls and still thinking of you...if anyone has touched my life it is you.. love x G x :-)

in reply to

Sorry I just remembered (and noticed) it is weekly (not daily Doh) xx

julie93 profile image
julie93 in reply to

Yes its every Monday, usually around the same time. Just got back and it went fine. This was my 4th weekly dose, I have 2 more, then 2 weeks off, then the plan is to have 6 more weekly doses. The taxol takes an hour but with flushes and piriton etc the whole thing takes about 2 hours.

Juliex

in reply to julie93

I did reply but I don't know wher it's gone?? anyway sending you love and best wishe x G x :-)

in reply to julie93

Hi Julie,

Thinking of you and hope you had a good night love x G x :-)

Dear Julie,

I've just noticed you mentioned a blog on Gwyn's post. I'm really sorry you've had such a dreadful month or so. Did they find out what was causing your vomiting? Was it something to do with the Letrozole? Sounds a horrendous cocktail.

It was definitely a good thing to seek a second opinion in the Marsden. It's a bit worrying isn't it that your local oncologist gave you no options and the Marsden have you a choice. Dose-dense weekly Taxol has the same effect as Avasstin and reduces the likelihood of numbness and joint ache. I would have tried Letrozole too had I been in your shoes.

I hope your weight continues to go up and the CA 125 continues to go down. I lost my appetite completely last year with the cancer being active and then surgery. I didn't think I'd ever enjoy food again but a year on my appetite has improved and I'm a better weight. Hopefully you'll find the same thing.

I'm glad you enjoyed your holiday in Wales with your friend. I seem to remember you were worrying a bit about the long journey. Hopefully it wasn't as bad as you feared.

I'm just hoping you start to feel better and better in time for a lovely Christmas holiday with your girls. xxxx Annie

julie93 profile image
julie93 in reply to Whippit

Hi Annie

They decided it was the cancer causing the vomiting, not the letrozole( I had actually been on it for 6 weeks when this happened and the only side effect was heavy night sweats) They checked me for bugs and infections too, didn't find anything.

Given that they think the vomiting is cancer related, they wanted me back on chemo asap, even though I was in a pretty poor state with exhaustion, weight loss etc.

I am hoping that after a while more on chemo I may be able to reduce the anti sickness meds further(already reduced them when i came off the pump) .

Yes Annie the post code lottery is still going on.However the good news is that after getting the 2nd opinion i was able to get weekly Taxol locally. This was agreed before I got ill, and this was very fortunate because as it turned out, I would not have been well enough to travel to London for weekly treatment.

Hope all is going well with your new kitchen.

Juliex

Whippit profile image
Whippit in reply to julie93

Dear Julie,

I just wish you were nearer. I wonder if you can tolerate some of the food supplements the hospitals give out to boost weight. It's a balance isn't it - to get you fit enough to receive more chemotherapy. At least as you say you can have your dose-dense weekly Taxol locally. My friend had hers administered at home which she said was much less draining and comfortable than getting to the local hospital. It might be worth asking given your personal circumstances. I feel you should be conserving all the energy you can.

The building work continues despite the objections from next door. It's amazing what a difference it is to have a cloakroom downstairs and everything on one level.

Please take care of yourself. If there's anything I could send you to cheer you up please say.

xxx Annie

julie93 profile image
julie93 in reply to Whippit

Hi Annie

The anti sickness meds work well and I have got supplements.Unfortunately though i just can't eat much ,including supplements for a couple of days after each chemo, then I gradually get more and more hungry and eat loads towards the end of the week.

The net result is that I don't lose weight but only gain very small amounts.I get 2 weeks off chemo soon so hope to gain more then.

i don't think home chemo is available in my area....i am gettting stronger now and friends and family have been great with lifts etc.

Have read about your horrible neighbour but i am sure the trouble is worth it, your extension plans sound wonderful.When do you think it will be ready?

Just got back from chemo,it went fine.Feel ok, bit tired.

Juliex

Whippit profile image
Whippit in reply to julie93

Dear Julie

I'm glad the chemo went well. I was just thinking you might be able to make a case for some home treatment as you have so many complications at the moment - but it's good you have such a wonderful support circle round you. The offer to send something over still stands.

I remember how I felt last year. I could only eat baby portions of everything and really had no appetite at all. I did find home-cooked Chinese food tasty. Loads of quick and easy recipes in Ken Hom's books. I think it was that combination of salty and tasty ingredients that could be made up very quickly which eventually helped my appetite.

My neighbour isn't really horrible. That's the real sadness for me. He's hot-heated and - how would I explain it - perhaps lacking in vision. He was offered a design by our architect but rejected it so we've amended the plans and I have to say I wouldn't like what he's asked for and I really feed bad about it.

Having said that, we've gone through the correct process, and even now the warmth and comfort in the house is tangible. The ground floor was originally on four different levels and it's now on just two. Having a cloakroom downstairs also makes a difference. It means the house is ready for whatever comes my way. It's warm, comfortable and energy efficient - both in terms of the environment but also my own energy levels.

It'll be another 5 weeks before the kitchen building work is finished, and another 4 weeks after that before the surfaces, sinks and taps are fitted. I've just checked that out - we should just be finished in time for Christmas.

I'm 60 years of age in January - how did I ever get to be this old!!!?? I've decided on a neighbour party and will invite everyone in for some awareness-and-fund-raising for Ovarian Cancer and Ovacome. It'll be a chance to cook up some lovely things and invite everyone round - hopefully my immediate neighbour too. It would be really nice to think he and I could start 2014 on a better note.

I'm thinking of you loads and hope it all gets better for you. With lots of love xxxxx Annie

Hi Julie

What a rough time you've had. Well done for getting your weight back up - I know how hard it is when food has lost all its appeal. I had weekly taxol/carbo and it is a bit of a slog but you get into the routine of it. How long will you have it for?

I really hope it all goes more smoothly for you now.

Monique x

julie93 profile image
julie93 in reply to

Hi Monique

I am finding I have no appetite the first 2 days after chemo, but by the end of the week I am starving.Today I am having my 4th weekly taxol, I think I have 6 then a 2 week break but i need to check today, the last few weeks has been a bit of whirlwind and i am only starting to get organised .Did the weekly chemo work well for you?

Juliex

in reply to julie93

Hope the 4th one went ok for you. I'm sure you'll be glad of that break!

I only finished treatment in August so it is a bit early to say whether it worked well. My oncologist was happy with the way things went during treatment.

Keep us posted

Monique x

Hi Julie,

Sorry I haven't been in touch lately. I got so involved in my own life I didn't think to contact you or some other people. Sorry about that.

I really hope you are feeling much better soon. It looks like the taxol is starting to work already which is great news. I hope you start feeling less sick soon as well.

I am so glad you had a good holiday and maybe next year you could go again.

If you fancy a visitor let me know I would be happy to come over for a chat if you would like. Let me know.

I am currently on Topetecan. I have had the first two and am having the third today. I haven't asked about my ca125 yet. I might today but I know some people said it can go up before going down on topetecan.

Lots of Hugs Jackie xxx

Hi Jacks

Hope you had a good summer.

I am still tired a lot, but maybe you can come over in a couple of weeks(if you are up to it) I will Pm you.

How is the Topotecan going?How often are you having it?Is it weekly? I am having chemo today too at 130.

Hugs

Juliex

Jacks150 profile image
Jacks150 in reply to julie93

Hi Julie,

Yes it is weekly. I have had three then next week I get a week off. Hurray!! So far I am tolerating it well. I am still managing to work and get out and about.

How about me coming over after half term the week commencing the 5th of november (obviously us both being well enough). Probably Wednesday or Thursday would be good as we are both having treatment on Monday's.

Pm me and let me know what you think. I hope you are coping well with the taxol.

Hugs Jackie xxx

Hi Juie

Sorry to hear it has been so horrible for you. I found it difficult to eat much following each cycle of chemo and just as my appetite was recovering it was time to start again. After surgery I could barely eat anything for a couple of weeks as I seemed to bring everything back up again but it gradually got better. It was very frustrating. It seemed like another pleasure taken away, just when it was most needed to distract me from all the other stuff, I'm back to around 8 stone now (normal for me). Here's hoping things will improve for you

Love and best wishes

Mary x

julie93 profile image
julie93 in reply to citrine

Hi mary

thanks

Like you , i am being treated in the hospital I used to work in.I was also a nurse.Took early retirement last year, after my 3rd line of chemo.

I wish you well for your op on Friday.

Juliex

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