Hi ladies
Had blood done again today as my platelets were too low last week fir me to continue with Xeloda
Again they’ve dropped!!... so have to have Xeloda deferred again and have blood tests again next week
How common is this?... anyone know?
I’m concerned that being off treatment will be detrimental and the worrying thing is that it had begun to work as I had positive scans a few weeks ago
Barb xx
I’ve heard that Xeloda stays around in your blood stream for quite a while. That could be why your platelets are still falling. Staying off a treatment is worrisome to all of us and I don’t think anybody really knows the answer...not the kind of study they would do, I would think. I think there is platelet replacement therapy but I don’t know anything about it. I would tell your oncologist your worries and see what he says. My platelets were going down on Ibrance but are improving on Xeloda so I haven’t had to go through that worry...yet.
Elaine
Hi Elaine
It’s the first experience I’ve had where I’ve had trouble with platelets...it’s usually low haemaglobin with me so that’s fixable with transfusions
I know we’re all different...Ibrance was my favourite (!!!) treatment when I look back as I functioned normally...I feel rubbish now on Xeloda but it seemed to be working so that’s why stopping it concerns me
Barb xx
Hi Barb
I too had to defer from Xeloda for a extra week and sometimes two until the drug stopped working
Take care hopefully this will be your last time
Shelby
Hi Shelby
That sort of cheered me up as I know it’s happened to someone else and not just me
How long did Xeloda work for you?
What are you being treated with now?
Barb xx
Hi Barb
Sorry to hear your platelets are still low. Wish I could give you a hug 🤗
Have you tried coconut water yet? I’m no expert but I understand it can really help raise platelets & also has several other health benefits. I’ve just received an online delivery from cost co. I drank some yesterday & it’s delicious. A more healthy type of “sunny drinking” eh?
Has Sarah had her wings clipped yet ? 🐓. I’ve just received 6 fertile eggs from a farm in Cornwall. I’m popping them in an incubator today & hoping for chicks 🐣 in time for Easter 🤞
I do hope you can get back on Xeloda soon.
Take care & stay safe.
Love Jo xx
Hi Jo
Yes I’ve tried coconut water and it’s rather nice when you get used to it so I’ve bought more and hope it helps...Sarah ( the chicken) had her wings clipped yesterday....a girl from our stables did it so Vanessa knows what to do in future
How exciting having some eggs to incubate...I know nothing about chickens but let’s hope you have live chicks for Easter...aww
All the best to you
Barb xx
I'm off Xeloda - not cos of platelets but high liver enzymes - really high. I've not taken any of the drug since 3rd February but while one of the enzymes has dropped, the other two are still climbing. So I am on taxol for the moment 
- first one yesterday. BUT - and I tell you this so that it might help with the worry - my CA153 has still dropped - twice - despite no drug for a month - so the Xeloda clearly still in system and still working.... They are seem a bit bemused by this, but the tumour marker has always been entirely accurate for me. x
That’s interesting...as you say the Xeloda must still be working
Will you be able to resume Xeloda if your liver enzymes behave?
Annoying though
I’ve read that 500mg a day is as effective as the higher doses so maybe you could try an even lower dose
All the best
Barb xx
I really hope so. I have agreed with my oncologist that we will review after eight taxol treatments. I am hoping to recommence on a very low dose. Looking on here it seems that some oncologists (USA?) start very low and build up and some (UK?) start high (I felt I was on VERY high) and see what you can cope with.... I really hope your platelets rise soon. all best x
Barb, you're going to think I've lost my mind, but here's a platelet-lifting therapy that many patients swear by (from, "The Insider's Guide to Metastatic Breast Cancer." As always, speak with your doctor before adding anything new as a dietary or vitamin supplement.
• Papaya Leaf may help boost platelet counts. One person on an online MBC forum wrote that she brewed dried papaya leaf to make a strong tea and drank a quart a day for a few weeks. Her platelet counts rose dramatically, and she was able to avoid the blood transfusion that her doctors were ordering. After this success, the lady repeated this advice to several others who were experiencing the same problems, and each time the platelets came up significantly. When the author told a friend with low platelets about the papaya leaf therapy, this was her response: "When I got your message about papaya leaves, I called my friend who grows papaya trees. She gave me fresh leaves, and I was grinding them with juice and that I drank twice a day. Five days later I went to my oncologist for chemotherapy. My platelets almost doubled (they went from 35K to 59K) and four days later I was able to get chemo. I can't thank you enough! My oncologist asked me what helped, and I told him about papaya leaves."
If fresh papaya leaves are purchased, the recipe is as follows: Wash and partly dry several medium-size papaya leaves. Cut them up like cabbage and place them in a saucepan with 2 quarts of water. Bring the water and leaves to the boil and simmer without a lid until the water is reduced by half. Strain the liquid and bottle in glass containers. The concentrate will keep in the refrigerator for three to four days. If it becomes cloudy, it should be discarded.
Although the recommended dosage in the original recipe is 3 Tablespoons three times a day, patients may want to start with less just to be safe.
One patient reported taking organic papaya leaf extract at a dose of 10-20 drops/day. Her platelets started at 88, the next week she took 20-30 drops daily and her platelets increased to 460. After she stopped taking the extract, her platelets fell back to 89. Once she added the papaya extract back and remained on it, her platelets remained in normal range.
In addition to boosting platelets, papaya leaf extract boosts the production of key signaling molecules called Th1-type cytokines. This regulation of the immune system, in addition to papaya's direct anti-tumor effect on various cancers, suggests possible therapeutic strategies that use the immune system to fight cancers. In fact, when scientists exposed 10 different types of cancer cell cultures to four strengths of papaya leaf extract and measured the effect of the extract after 24 hours, the papaya had slowed the growth of tumors in all the cultures. From: naturalnews.com/028472_papa...
Also:
• Sharks Liver Oil and Chlorophyll Tablets: The husband of an MBC patient indicated that shark’s liver oil and chlorophyll tablets successfully helped to maintain his wife’s platelet counts.
• Steak, Pineapple, and Exercise: One person wrote that eating two organic steaks (she was vegetarian prior) and two pineapples per week boosted her platelets considerably.
Additionally, exercising before taking a blood test may help to increase platelet counts.
• Wheatgrass, Pumpkin and Spinach may also be helpful as per top10homeremedies.com/how-t...
Hi ! I'm on Ibrance and just had to take another break due to low platelets. Just wondering how low yours dropped . I'm coming up on 5 years on it and wondering if my body just can't take it anymore.
Hi Barb, I took Xeloda 22 months and I found it pretty tolerable with the exception of what it does to your feet 🦶🏻. Perhaps your onc can lower the dose some & yes it does stay in your system for up to 3 weeks I was told.
I hope they can dial in the dose & get those platelets in check for you. Good Luck!! And baby those feet
Hi there
My feet are ok since the dose was lowered to 1000 mg twice a day...I do put cream on every morning though
That’s reassuring to know that Xeloda might still be working whilst I’m off it..thanks for that as I’ve been concerned about that
All the best to you
Barb xx
White blood cells dropped!
Getting ready for the first gift drop
Xeloda Experiences Please?
Please keep,your fingers crossed for me
