Update and ideas!

[Alifit]

I thought I’d update you on my Weekly Taxol treatment and ask for some ideas to shift a problem I have! This may be long, please bear with!

I’m about to have my 9th treatment, which means I’m halfway through. Overall, this regime has suited me well, apart from a couple of emotional wobbles as I got used to going to the hospital every week. I have a high dose of steroids the day before, on the morning of chemo and just before the infusion starts - this should prevent me having an allergic reaction, as I did in 2016, but it also prevents me sleeping and keeps me buzzing until the end of Saturday. The come down is apparent and I sleep for quite a lot of Sunday and Monday. I can usually get to my afternoon activity on Monday, known as ‘tarting’ (because we go to a cafe which sells tarts, honestly!), but unusually, I’m not hugely conversational; I can eat and drink though! I try to plan an activity on Tuesday - Tatton Park with one of my lovely friends this week. I’ve continued to ride the lovely Bacardi through this regime - I might fall off her but I might fall over at home and I know which one I’d rather. I dance and drink on Wednesdays, see friends on Thursdays then back to the hospital on Friday. Now I know what to expect I’ve found it really manageable. I don’t take any anti-sickness drugs, but have been given stuff to boost my magnesium. My neutrophils have stayed well within the normal range and I’ve only had a couple of small mouth ulcers. My appetite is really good, but I need to go easy on the cakes! I’ve still got a lot of hair too. Aah yes - and my CA 125? At the start of weekly taxol, it was 1800 - it’s now 700 - going in the right direction!

None of this would be possible without my lovely family - especially the bloke who is just amazing - I get fed some pretty spectacular scoff; the garden is looking beautiful, thanks to his efforts; he doesn’t mind a bit of ironing (i.e. he does it all); he comes to chemo and my appointments and works full time too! He’s my Superhero!!

I wonder though if any one else has had and has found an answer to an abdominal wind problem. I’m bloated - not by ascites - it comes and goes (both up and down!). I have been told it is due to tumour activity which causes slow motility which constipated me for which I take docusate sodium and occasional Laxido. My fluid intake is often questioned and if I’m honest I don’t drink enough water - mostly because it tastes horrid at the moment. The whole thing is just a bit anti-social, but stronger laxatives aren’t recommended and I’m not sure of the wisdom of taking old fashioned remedies like Andrews or bi-carb. Any ideas for this slightly unpleasant problem would be welcome. Please feel free to berate me for my fluid intake - I am trying to do better!

It has been a really difficult month on the forum, and I know there are many of you out there who are not in a good place at the moment. I’m sending very much love to you all.

The same love goes to everyone who have had good news recently - long may it continue.

With lots of love and best wishes, Ali x

💤🍰🗺🐴💃🥂😘😘

[Doglover1410]

Sounds like your making a great job of the chemo/time between! Well done.

I will say that you need to drink water! Do you like sugar free squash maybe? Or there’s those new ‘tea bag’ type things you put in your water? My team at work are addicted to them I think!! 🤣🤣

Or figs.....my oncologist and I discuss the dried v fresh!! I like fresh and 3 with some yoghurt gets things going again! x

[Alifit in reply to Doglover1410]

I so know you’re right and have made a real effort today. I did nearly wet myself at the end of chemo though - has to make a dash for the loo with a beeping machine!! My friend and I who have known each other for forty years still have far too much to gossip about. Thank you - I love figs too, but they may be deemed too fibre rich for me. Lots of love Ali x

[Purple-iris]

Hi Ali

You definitely seem to be on top of things with a great routine. Love that you’re still horse riding.

Not sure if it will help but I was recommended mint tea by the nurses after my surgery for bloating and wind and it really helped. Still drink it now when I’m feeling uncomfortable.

Keep drinking the water, constantly on to my daughter for not drinking enough ! ( water that is !)

Love and best wishes Kim x

[Alifit in reply to Purple-iris]

I’ve started mint tea today - it makes sense doesn’t it. I just needed a kick up the proverbial - the problem is plainly mine to solve!

Hope you are well and doing all you can too. With love, Ali x

[marylondon]

Hello Ali , good to hear that you are half way through your Taxol regime & responding well . Great that you are having quality time for at least half the week .

Like Kim , I have found Mint tea very soothing for this problem plus Peppermint oil capsules ( Colpermin ) . I wouldn’t think they would be contra indicated but worth asking them . But they do have some peanut oil in them ; in case you have a nut allergy . I also find Bottle green’s ginger & lemongrass cordial helps to flavour

water & helps the digestion .

Love ,

Mary x

[Alifit in reply to marylondon]

My friend brought me some Robinson’s cordial - crushed mint and lime flavour - it made things much more palatable. I’ve had mint tea today too. I’ll check with my team about peppermint capsule - I think I’ve got some somewhere!! Thank you for your advice.

Love to you, Ali x

[Caroles1]

As Kim said, mint tea, helps with wind and bloating.Maybe flavoured, still water.

I used to take 1 tab of Sennacot in the evening for constipation, it’s gentle and herbal and did the trick for me.

I had to reduce my steroids considerably since they made me wild!, instead had a slow infusion of anti histamine, at chemo, since I had a huge reaction on my first carbo/taxol infusion.

Also still occasionally take Omaprezole, but, without them I would not have been able to eat.

Maybe now eat too much😩

Carole xx

[Alifit in reply to Caroles1]

I’ve been told not to take Senna as it may be a bit harsh for my digestion. I’ve been on the mint tea and other recommendations today and I’m not getting the same level of discomfort. I guess I need to keep it up to show real results. Thanks for your help, much love Ali x

[Flamingobeef18]

Hi Ali

Lovely to hear how well you are doing on your weekly Taxol.

I feel like I am following in your footsteps. Just finished Caelyx in May and shortly to start weekly Taxol. Have not been looking forward to it so very reassuring and inspiring to hear how you have managed to make it work.

Do hope you solve your little wind problem. I myself could trump for England so do sympathize!

Lots of love

Juliax

PS just been looking at our old “meet up” photo. I really enjoyed that day. Do you ever hear from Girt or Anthea?

[Alifit in reply to Flamingobeef18]

No - I found an article on Ovarian Cancer Action featuring Girt, but it was from around when we met up. I haven’t seen anything from Anthea at all. I will email the group just to see if another get together is possible, or just for everyone to give their updates if they want. I’m platinum resistant now since I finished Carbo/caelyx last November. Having weekly taxol has made me think that a lot of my problems during first line chemo were due to the Carbo and not the taxol. I didn’t enjoy caelyx and it didn’t really work either. My aim is to get my CA125 down to a reasonable level (for me) and get some holidaying done then if it starts up again, ask to see the folk at either the Christie or the Marsden for potential trials

I do hope the taxol works for you and I would love to meet up with everyone again. With much love, Ali x

[Flamingobeef18 in reply to Alifit]

That is a good idea to email everyone. I too would love another get together or as you say just to hear how everyone is.

I think I am still platinum sensitive although it has not been put to the test. I ended up on Caelyx because I had a heart attack on Carboplatin and they thought it would be safer for my heart. Unfortunately like you I didn’t get a brilliant response on Caelyx but luckily it didn’t give me many problems.

We have a cruise booked next month and I am desperate to do this before starting the weekly Taxol. My Onc did say so long as I remained asymptomatic I maybe able to delay my start date for chemo so I am touching a lot of wood just now!

Lots of love and hoping it will not be too long before we all meet again

Juliax

[Rags2Bags]

I have never, in my life, drunk enough fluids. Just don’t get thirsty and even then a couple of gulps of something cold hits the spot. But now I am on chemo and need to be sensible about my fluid intake my daughter bought me a drinking bottle with a flip up straw type top. It has marks all down the bottle showing 9am, 10am etc down to 1pm, then you fill it up again through to 6pm. Drinking through the straw is easier to drink more (for me) than a glass. It really has increased my fluid intake without seeming like a chore. If you fancy giving it a go the bottle is called HYDRATE! By Polar Gear. Plus I hate flat water, so I refrigerate sparkling water and sometimes add just a dash of sugar free lemon or orange squash. Sorry to have gone on for so long, but this bottle has been such a help to me. Good luck to you x

[Alifit in reply to Rags2Bags]

Thank you. I do have a range of water bottles - the one with the flip up straw is the best because I can have it by my bedside and just lean over for a quick swig in the night, mine is a child’s one and only holds about 350mls, so I’ll have a look at your recommendation.

I think generally that most people naturally drink enough for their own requirements and don’t necessarily need to be carting bottles around - however the circumstances in which we find ourselves increases that requirement - I had chemo yesterday and really chugged down loads of fluid and I do feel better this morning and my bowels are working better too. Point proven really, but still to get my head round doing it all the time!

I hope all is well with you, best wishes, Ali x

[bluepeterella]

I take the wind as a sign that everything is working well, with no blockage. That’s what I tell my OH anyway. If you’re still horse riding you’re doing amazingly. I’m just glad my pony loves his holidays, getting back on board next week x

[Alifit in reply to bluepeterella]

Good point about the wind - I just don’t like it when it hurts! I look forward to hearing how you get on next week - take it easy (to start with)!

With love, Ali x

[Katiebairdie]

Hello Ali

We seem to be on the same regime. I’ve had carbo/taxol, caelyx, and Niraparib. I have now had 8 weekly taxol infusions which is what I was offered. So I finished that and straight away booked a holiday. Since booking holiday I have seen oncologist who asked if I would like more taxol. He made it sound like a nice present!

I’m going on my holiday and will see him in September. It makes sense to have more chemo.

I have tolerated the regime much better than I expected. I had the dreaded cold cap and have kept most of my hair but it has thinned a little. I had a rash on my face the day after infusion and sufferred from a runny nose and slight nose bleeds. Apart from that I have just carried on as normal. Thankfully no bowel problems.

Best wishes

Kathy

[Alifit in reply to Katiebairdie]

Yes we are pretty much parallel in our treatment except I haven’t had Niraparib. I remember thinking that 8 weekly taxol was unusual when you mentioned it in a reply to my post in May. Well it might be nice to have a holiday break them get back to it - I hope the chemo comes gift wrapped!!

I’m glad the regime wasn’t bad for you either - my hair is still in place although thinner than it was - I had it cut very short. It will come out eventually but I really don’t mind.

My bowel problems are almost certainly due to the disease rather than the chemo - although this extra water I’ve been drinking has made a difference!

Enjoy your holiday and stay well! With love Ali x

[tara108]

Hi. I absolutely love your zest for life. Amazing.

I may not have had the same problem, not sure, but what made a big difference for me was putting the tiniest bit of bi carb in my hot lemon and water or cup of tea every morning. It solved all my problems with reflux, wind and stomach bloating. Don't overdo it and as everyone said, at least 10 mugs of fluid a day. On chemo, I can only tolerate hot water or hot water with lemon, and japanese green and bean tea with bit of pure honey which is good for cancer.

And yes, I too can't sleep for days on the steroids. I am always asking NOT for 8 mgs but 4 apart from 1st chemo!

Big hugs from English gal in Australia

[Pendle99]

Hi Ali, I read your post with great interest as I have recently started on this regime ( number 3 tomorrow). I too have a wind problem plus loads of gurgling noises after drinking or eating anything. This has all come on as my CA125 decided to go sky high so I assume it is due to the little blighters doing something to my digestive system. I am constantly apologising for belching and gurgling. The children think it is hilarious. I too had a reaction during first round of chemo so start my steroids on Sunday for my fun day on Monday. I am really impressed by your social activities as at the moment I seem to be physically knackered and can walk hardly anywhere. I am really hoping this inproves. Good luck with the wind - i can do some seriously loud unlady like belches now 😉xxxxx

[Hudson88]

I have completed my weeks of Taxol and constipation is a nuisance . What seemed to work for me was dried figs although they sound a bore they are not to bad also a pear before bedtime helps. I know I would have tried anything so other peoples remedies some times help. Good Luck Anne 😀

[ShropshireJo]

Hi Ali. Good to know your positive approach to weekly taxol is helping. I am full of admiration for your can-do attitude and want to send love and best wishes for the second half of the treatment regime. Jo 🌺🌼🌸🌻🌹