Has anyone had to stop Xeloda due to low platelets

[Barbteeth]

Hi ladies

Had my monthly bloods taken yesterday and my platelets were low

I’m on Xeloda 1000 mg twice daily

I’ve been told to defer the chemo for a week and have bloods taken again

Anyone else had to do this?...first time I’ve had a problem with platelets being low...usually it’s my haemaglobin

Any food/supplements that may help...I eat very little meat

Barb xx

[Marieleb]

Sorry Barb. Can’t help, having problems with low white blood cells but not platelets. Hope you are keeping ok.

[Barbteeth in reply to Marieleb]

Hi thereI’ve struggled lately with nausea side effects si requested some steroids which are helping tremendously

I actually felt well enough to get on my horse today after 6 months...now paying the price!!...have you had to defer your treatment as well?

What a life

Barb xx

[Barbteeth]

Thanks Sandra I’m not a vegetarian but my husband is and I’m not that fond of meat but will increase my intake...I do take high Vit C doses and B12 etc etc and drink loads of fruit juices

It’s just the chemo pills causing this but wondered how common it is with others...hopefully it’ll bounce back to acceptable levels...typical that I’ve put up with side effects and the drug seems to be working and now I’ve got to stop!!

Barb xx

[Justme153]

Sorry Barb this is happening. I can tell you sometimes things happen and no one knows why. Maybe it's not the medication and you will be able to continue on it since you said it's working. My brother like 25 years ago had his platelets drop they ran all kinds of tests took all kinds of family history questions etc. They never found a reason for it to have happened. And it never happened again. Hoping yours is just a fluke like his and you can continue with your treatment.

[mariootsi]

Barb, my platelets are low. I eat alot of spinach and eggs. I also get B12 shots and take sublingual B12. They seem to help.

[Barbteeth]

I quite like pate so I’ll get some...beef liver ugh!!...I did buy some roast beef slices today and had a sandwich I’ll buy some coconut water as well...never tried it but it sounds lovely

Thank you for your knowledge and encouragement

Barb xx

[Photo-Bug]

Barb-My platelets while on Xeloda have been in the low range of normal unlike when I was on Ibrance for a short time. I don't do anything special, not good at eating veggies, just take my timed-released multi vitamin & mineral supplement. I was on 1000mg twice a day but dropped to 500mg in the AM & 1000mg in the PM one cycle ago. Blood test coming up March 5. If I don't have a "senior" moment, I will let you know my result.

May your levels get back to normal.Sharon

[Sunnydrinking]

Barb

Just to say I’m really sorry you are suffering with low platelets.

I don’t really have any advice to offer you but it looks like other ladies have helped.

It’s great you managed to ride your horse.

All is currently going well for me on Xeloda. I try and take one day at a time.... but I can’t wait to do more once covid restrictions ease. I particularly miss my weekly swimming .....

Take care

Jo xx

[Barbteeth in reply to Sunnydrinking]

Hi JoIt was weird getting back on Bugsy but after a trot I felt like I’d never been away..I shall do it again next week...I’ve got my daughter to ride with as we have another horse...Monty...so we can get back to riding/gossiping etc...very therapeutic

I’m not a vegetarian but don’t eat much meat so I’ve bought some roast beef slices and Vit B12 and 6 ...also Sandra suggested coconut water ...I’m hoping this regime and another week off Xeloda they’ll increase...apparently the nurse said the platelets weren’t horrendously low so that’s good...anyway will find out next week

Have you had your first Covid vaccination ?... had mine last month so next one is April

I still get cross when I see folks still ignoring the rules...a colleague of mine just went to his cousins funeral...she was 37 with three young children...Covid doesn’t just affect old people...another friend of mine’s granddaughter of 18 months has tested positive yet her pregnant mum, dad ( a doctor) my friend etc all tested negative...I wish more attention was drawn to these cases so people would take more care...selfish!!

All the best

Barb xx

[Sunnydrinking in reply to Barbteeth]

Hi Barb

Great to hear from you.

Yes both me and hubby have had our first Astra Zeneca vaccine on 2 Feb. We are waiting to hear on follow up jab but likely to be the end of April.

Steve and I have just walked along our lane and using a grabber stick we have collected a bin bag full of rubbish including several face masks. This is to avoid our little dog picking up one of the masks and also make our dog walking more pleasurable.

We are still being very cautious, but so many aren’t....

Enjoy the sunny weekend. Bubble & Squeak are fine and laying. Sadly, mumma hen passed away not long after they could fend for themselves... bless.

Jo xx

[Barbteeth in reply to Sunnydrinking]

Hi JoPleased bubble and squeak are happy and laying lots of eggs...shame re mummy hen though

One of Vanessas chickens can fly really well and now ‘escapes’ on a regular basis!!... the lady whose house is opposite and who works on her computer by the window often has this chicken tapping on her window when she’s working!!.. I think Sarah (the hen) will have to have her wing clipped as she’s being naughty and Vanessa doesn’t want her getting run over...the other two are just happy scratching around in the garden!

All the best and have a lovely weekend

Barb xx

[Sunnydrinking in reply to Barbteeth]

Hi

There’s often a naughty hen! Wing clipping is harmless & will solve the problem. I’ve done it regularly it over the years ! Sarah is my middle name & I can be a bit naughty at times...

You are often in my thoughts Barb, MBC sucks !! We need to live the best lives we can & I think it’s fab that you are riding Bugsy.

Jo xx

[Whaat]

The Insiders Guide to MBC mentions papaya leaf extract as a possible solution. It works for me as I too had very low platelet counts.

[Barbteeth in reply to Whaat]

Hi thereI’ll try some of that...anything that may help and isn’t contraindicated with Xeloda

Barb xx

[Whaat in reply to Barbteeth]

Absolutely check with your oncologist. Best wishes.

[ChrisVict]

Barb I think a week off and a few of these remedies will help. It’s nice to see you in better spirits though. It doesn’t sound like your going off Xeloda just managing a side effect. I’m also on it and still haven’t got The first blood test to see if it’s working I know it takes patience and dealing with

Numerous side effects. I remember when I was on Ibrance and doctor would manage platelet going to low and I would go off and then back on.

[Barbteeth in reply to ChrisVict]

That’s reassuring as although my last scan was good and I want the drug to work...there’s no way I’m spending what time I have left...feeling sick and sat in the house all day...I’d rather stop the chemo for a while and risk it ( if you see what I mean)Barb xx

[Barbteeth]

I’ll avoid !!Barb xx

[ChrisVict]

I understand. I refused chemo early on after 2 sessions the whole process with cold cap was horrific mostly in my mind even though I was at the best hospital and excellent care . After a bout with depression and help with my mental coping. I don’t have that same approach now I’m trying to make decisions to lengthen my life.

[Whaat]

Thank you for sharing . I really appreciate your knowledge.

[Cureforever]

Hi Barb. I had a problem with liver enzymes when I started Xeloda. My platelets were also low. The doctor lowed the dose from 2000 to 1500/a day. Thus, the blood improved Good luck,

Marina

[Staysha in reply to Cureforever]

Marina,I figure you’re new to the board. Just wanted you to know we lost Barb awhile ago. It was heartbreaking for me as she was a dentist and great resource for information and encouragement. I really “looked up” to her. Just wanted you to know.

Stacy