Ovarian Cancer Stage 3A: I had total hysterectomy... - My Ovacome

My Ovacome

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Ovarian Cancer Stage 3A

ElayneZ profile image
ElayneZ

I had total hysterectomy a month ago. Will start chemo weekly for 18 weeks end of June. I am told everyone’s side effects are different. However all have said “fatigue”. I live alone and have agreed to Uber to and from treatments. Hoping I can handle daily needs alone. Do you think that’s possible or should I hire help?

Also wonder if weekly will be tolerated better than every three weeks??

27 Replies

I think you may a new person on this forum so I will be the first to welcome you.... read as many posts as you can, to give you an idea of how your treatment and side effects might proceed. If you click on the small round icon next to someone's name it will take you their profile if they have one and all previous posts.

But you are quite right - everyone reacts differently both physically and emotionally. If you have come through the hysterectomy stage then you have already made one massive leap.

It's interesting that it is planned you should have weekly taxol - I think it is becoming more the norm. I had 3 weekly carboplatin/ taxol when I was first diagnosed 2 years ago with surgery half way.9 months down the line I had 18 weeks of 1/3 rd dose taxol again on its own and certainly it was kinder on my body's system, though eventually I did lose my hair, got peripheral neuropathy and had finger nail lifting( although I do believe the more treatments you have the worse some symptoms get). However I wasn't nauseous, didn't have any extreme reactions and generally felt stronger and better in myself.

I found that fatigue itself wasn't a problem, though you do need to listen to your body and rest more frequently, but it was lack of energy , strength and a spaciness head feeling which I still have...as if I am on another planet.

I wonder how old you are and how far away from the hospital ?

There are loads of taxi services offered from my hospital ( Christie's) and hospital transport also if needed... not sure how any of this works though...

I hope you have some friends to lean on and share if you feel down, but many cancer specialist hospitals have a Maggies centre and people to talk things through. As for housework... my level has taken a nosedive since I was diagnosed... 🤣 but I do love my gardening and short periods of exercise, walking or some physical activity you enjoy is be encouraged even if you dont feel up to it at times, plus we are ll here to help you with any questions.

Hope that helps a bit... and that treatment goes well for you, you probably won't notice much difference until about half way through.

Take care Janet x🌈

ElayneZ profile image
ElayneZ in reply to Janet235

Thank you Janet. Yes I am new to this forum and sure appreciate your great response. It's been just 5 weeks that I even knew there was a health issue after spotting a few times in 48 hours. A week later I was in the hospital for total hysterectomy! I'm 65 and "otherwise" in very good health - and take no medications. I pray the chemo is better tolerated on a weekly schedule and doesn't wallop me even more so.

The chemo treatment for my OC Stage 3A is starting end of June for 18 weeks - First day of each cycle will be Taxol/carboplatin - then the following two weeks will be only carboplatin. So the 4th week will again be the T/C "cocktail".

Thanks again! And many continued good days ahead for you!!

Caroles1 profile image
Caroles1 in reply to ElayneZ

Hi love,

Everyone is different, I was 58 when diagnosed, had a radical hysterectomy, then 6 months carbo/taxol.

I can honestly say, I felt very well, the only day I got tired and gave in was the 2nd day after chemo. I am not superwoman, but did everything I did before (after the 6 week rest guideline).

I had groceries delivered and Hubbie did the gardening, but that was all.

As I said, we are all different and it may effect you differently, most importantly, be kind to yourself and don’t overdo things, seek help and take it if it is offered,

Wish you well,

Carole xx

ElayneZ profile image
ElayneZ in reply to Caroles1

Hi Caroles1, it is SO wonderful to read that except for one day after chemo that you felt well! Thank you for the reminder to be kind to ourselves. That is important!

ElayneZ profile image
ElayneZ in reply to ElayneZ

Sorry - correction: First day of each cycle will be Taxol/carboplatin - then the following two weeks will be only Taxol. And the 4th week will again be the T/C "cocktail".

Cropcrop profile image
Cropcrop in reply to ElayneZ

I had the same cocktail in 2014, the taxol is really fine, carbo maybe not so much, it’s a cumulative effect so it gradually gets a little worse as you progress but the upside to the taxol being each week is that the side effects are minimal. Fatigue does play a part but if you listen to your body you’ll be fine. We were always advised not to drive post chemo as the combination of drugs especially the Piriton can make you a little sleepy but you will be fine in a taxi. I hope it goes well for you, big hugs ❤️Xx Jane

ElayneZ profile image
ElayneZ in reply to Cropcrop

Thank you Jane! This is very encouraging! I truly appreciate it!

Hello ElanyneZ, welcome to this very supportive forum.

It sounds like the medical staff were quick it pick up on things and you now have a treatment regime in place. It sounds like you may live in London? (Uber?). I think you may need some help....even if it’s only ‘moral support’. Things like shopping/housework can be very tiring when you are on chemotherapy. If you are very organised, you could make some small tasty meals and freeze them while you are waiting for chemo. You can’t do much housework if you’ve had a hysterectomy but how about asking around for a cleaner in your neighbourhood who can come in now & then?

Neighbors & friends and family of course are usually pleased to help - but it is best to be specific in your requests.

Wishing you well and keep us posted.

Linda xx 🌸🌹🌺

ElayneZ profile image
ElayneZ in reply to Seasun36-uk

Thank you Linda. I do have a house cleaner so that is covered. And I do have emotionally supportive friends. I will practice accepting help when offered. (My husband passed 13 years ago and I live alone.) Family has been wonderful and supportive but nearest one is my sister two hours away. Reading through all the possible side effects is overwhelming. And truly not knowing what to expect! I do believe a positive attitude is important and will continue to have that as much as possible.

Seasun36-uk profile image
Seasun36-uk in reply to ElayneZ

Yes being positive does help Elaine. The side effects sound awful - but remember you may only have one or two of them (or none!). The most distressing ones I found were diarrhoea & constipation! So have on hand medication (that you’ll be given) for both eventualities! Drinking plenty of fluids and going for little walks (sunshine) help a LOT.

Best wishes, Linda xx

ElayneZ profile image
ElayneZ in reply to Seasun36-uk

Thank you Linda! I appreciate your reminder that not everyone gets every possible side effect!! Researching on the internet can be quite scary! This forum is much more encouraging! And I'm glad I came upon it!!

Hi, I think Janet and the other ladies have given you good advice , I'll just add I've had a lot of chemo in the last 4 years ,this is my 6th treatment and yes had some bad side effects but I've managed them all and still kept, most of the time my little part time job

Fatigue is a most common one but be kind to yourself and rest as much as you need, any side effect talk to your medical team and of course we are here to help.

I don't know how it works were you are but here we can talk to our cancer support and help at home can be arranged especially if you live on your own ask your team.

take care hope all goes well Lorraine xx

Thank you! Good thoughts to you on your journey!

Hi. Welcome, and I am sorry that you find yourself here, although living on your own, as I also do, you will find the support and information invaluable. I organised internet food shopping and stocked up with good quality frozen meals (Cook) for when I couldn't be bothered to prepare food. Also, I just went to bed when I needed to, often within an hour of getting up. I also tried to go for a short walk every day. At least when you live alone, I find that the house stays pretty clean and tidy so I did housework in short bursts, resting when necessary. Ask friends to stay in touch so that you can have trips out for coffee or lunch. You will get to know when your "good days" are. I had my treatment every three weeks, but I have heard that weekly chemo is less demanding. I hope it all goes well for you, and do stay in touch.

Jenny

ElayneZ profile image
ElayneZ in reply to 27-359

Thank you for your encouraging words!

Hi ElayneZ

I am on 2nd line treatment. My treatment is Carbo/ Taxol every three weeks, you are quite right everybody is different.

I have had one infusion and side effects so far are the same as first line treatment, I am not so good the first five days but after that I am up and about doing housework, shopping and walking.

I understand this treatment is cumulative, so I will see how I am after next infusion on Thursday. If I continue with the same cycle of symptoms it will be doable.

Ellsey xx

Good luck and good thoughts to you during your treatment!

Hi Elaine, welcome to the site you don't really want to be on but you'll find there's lots of help here.

I had chemo weekly for 18 weeks. I found it tiring but not impossible. I still walked every day and small chores caused no problems. When I was really tired it usually meant I needed a blood transfusion and after one of those I could have skipped round the country.

As you say, everyone is different. Perhaps some friends and neighbours could help. Do things in small amounts and don't rush. Shop for food online, that sort of thing. You'll find your own pace. The house work can wait.

Good luck and best wishes for the future, Zena x

ElayneZ profile image
ElayneZ in reply to ZenaJ

Thank you for your wise and kind words! I truly appreciate them!! Especially "tiring but not impossible" ... take care!!

Hi Elaiyne and sorry you are here but glad you are here. This is the best and warmest place to be with questions, concerns, and support. I was so afraid after all I had read about chemo and yes, we are all different but I had no side effects from Frontline. I was able to carry on the day after (I rested day of because the pre-meds--like benedryl--made me feel drunk so my head just didn't feel normal). I know I was one of the lucky ones. Everyone else has said what you should hear--and I will just add that you should read up on the constipation aspect of it--keep ahead of it and take all necessary precautions. There is a search bar on the top right of the page you just put in "constipation" and you will get loads of input and suggestions.

As far as living alone--hopefully you do have people who can check on you and make sure you tell your healthcare team about that too.

Wishing you luck and smooth sailing. Pre-meds make chemo different than it used to be for many and I hope you are one of them. Take care...oxox

ElayneZ profile image
ElayneZ in reply to Maxjor

Thank you for sharing! And for the information on how to retrieve more info in the search bar. Continued good thoughts to you on this journey!!

Hi Elayne,

I am the same stage as you - 3a - was diagnosed early last September after a routine gynaecologist check up. I had a full debunking op and then 6 carboplatin/ taxol infusions every three weeks. On the third appointment I also started with Avastin, which I'm still taking. I had a pretty bad 5 days following each chemo appointment - actually the first day was always fine, I only had a very pink/red face. The 2nd and 3rd days were pretty rough, I had horrible aches in all my joints and could never get comfortable. After that it got better...but I then had an awful taste in my mouth for quite a few days afterwards. I also got a bit of neuropathy, which faded over time - but which still bothers me a bit on hot days (I finished chemo at the end of January this year). I didn't ever get nauseous (they gave me pills for that) and apart from the first 4-5 days I was able to go out and about (taking care to always wash my hands and stay away from infected people - not easy over winter!) although I did feel very tired and I became easily exhausted if I overdid it. I also had taxis to the oncologist's for the chemo appointments. It's probably best to get supplies in before your appointment, just in case you don't feel like going out to the shops and maybe freezing some meals...so you don't have to cook too much. Try to get out in the fresh air whenever you can, even if it's just for five minutes. Take your favourite sweets/nibbles/drink to combat the taste thing and if you get a sore mouth (some people get ulcers, the corners of my mouth were sore occasionally) my oncologist recommended frozen fresh pineapple pieces to suck (not tinned!). I was also recommended to take vitamin B complex and omega 3 capsules to help combat the neuropathy - I never really develped it too badly, so maybe it was effective.

Hope you find some of this useful. Good luck and all my best wishes from Leipzig.

Christina xxx

ElayneZ profile image
ElayneZ in reply to Cnmart

Thank you! I find this all very useful and appreciate the information. Continued good thoughts to you on this journey!

Welcome Elaine, and sorry that you find yourself with ovarian cancer.

My chemo is 3-weekly Paclitaxel/Carboplatin plus Avastin. It seems on days 4-6 I'm mostly resting / in bed because I'm quite dizzy and tired as well as running out of breath after a few steps or just the morning shower routine, plus struggling with unruly bowels (making walking outside or grocery shopping difficult). But even on those days it's possible to be self sufficient, just taking a few steps at a time.

Getting a number of prescriptions filled by your GP ahead of chemo start will see you prepared for some of the more common side effects (incl. something against nausea, just in case). For any more serious health problems, pain, fever etc, you'll call your CNS right away.

Some of the 'chemo essentials' my cupboards hold include:

Ear thermometer, blood pressure checker, skin disinfectant.

Stool softener (Movicol), sanitary towels (no kidding), laxative, Immodium.

Ondansetron, ginger, MCP, sea bands (getting Emend from chemo ward).

Paracetamol, sterile band aids and shower plasters.

Soothing mouth wash and mild tooth paste/soft brush against mouth ulcers.

Body moisturizer (Cetaphil), shampoo/shower gel for sensitive skin.

Protective nail base coat/polish/top coat with silicium and urea.

ISO drinks with electrolytes e.g. magnesium.

All the best with chemo. Please let us know how you get on. Maus.

ElayneZ profile image
ElayneZ in reply to Maus123

Thank you for listing items in your Chemo Cupboard. That is a great help as I will be starting chemo next week and will get all items I may need before then! Continued good thoughts for your journey!

Absolutely weekly is ok I had 24 weeks of taxol last year and I didn’t have any side effects at at all - good luck you’ll be fine xx

ElayneZ profile image
ElayneZ in reply to Jo2305

Thank you so much for your positive response to my post! I have Taxol #3 of my 18 weekly treatments tomorrow. I had a reaction to the first one within a few minutes. They increased the steroids and antihistamine and proceeded without a problem. Thank you again!! Good to read side effects were even minimal!!

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