My blood test arrived this morning and the platelets count is now down to 43 g/l (43,000 /mm3). It was 60 last week and 94 the week before, so coming down quite a bit each week. No chemo again yesterday and another scheduled for next Wednesday, fortunately. It should have been my last yesterday but it's been delayed for two weeks. Eating shed loads of papaya has done absolutely nothing. If it drops next week by another 20 points or so I'll be almost in the spontaneous bleeding zone. The hospital hasn't said anything about a blood transfusion but I haven't seen them for 2 weeks.
On top of that my reds and whites have also dropped. The CRP has doubled - my fault, hardly had any ginger tea this week - but the ferritine is down a bit but still more than twice what it should be.
I'm scaring myself that I'm heading for Lymphocytic Leukemia on top of everything else as I've now two new lumps in the lymphs under my arm. Cannot see the others so don't know what's going on there but the glands in my neck are sore (but I do have a bit of a cold trying to develop).
I'm going to see my GP tomorrow. Do you think he can get me a transfusion? I live in France don't forget but I should think the GPs here have the same authority as GPs in UK. I'll also ask for a CA125 while I'm there. It may cheer up my Chritmas a bit - or not.
Thank you girls. I know you'll all have some good advice. My usual sense of humour is depleting rapidly - about the same speed as my platelets....
Love Kryssy xxx
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Kryssy
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Sorry, meant to say, I've got bruises popping up everywhere and my nose is almost bleeding 24/7. Having to sleep on a towel now. Heart pounding out of my chest at 100 beats a minute resting and just a walk across the room makes me breathless. Doesn't sound too good really when I write it all down.
Kryssy. So sorry you’re having such a horrid time. Sounds like you need to see the doctor or better your Oncologist urgently. None of it is your fault so please don’t beat yourself up on top of everything else. Please get some medical advice ASAP. Love Jo 🌻🌺🌼🌸🌹
Onc cannot see me on a proper one-to-one appointment until the new year. I normally see the on-duty onc every week at chemo clinic - every third week it's my own onc - but as I haven't been for two weeks I've seen no-one. The nurse that phones to tell me it's off doesn't have the power to say come in for some blood so that's why I thought my GP would know better. Fingers crossed it's the right move. Had to be so close to Christmas though. The whole of France closes down. It was the same for me starting chemo. I had to wait until the end of August as August is when everything is short staffed as it's holiday time over here. And don't even get me started on the two hours lost everyday from 12 to 2 when the only places open are restaurants. I think we have public holidays every other week here too - well it feels that way. No ordinary shop, bank, post office or local grocery shop opens on Monday either. Grrrrrr
Very frustrating but even more so when you’re feeling so unwell. Hope GP visit bears fruit. If not, there’s always A and E which none of us want to use but if there’s no other way ..... . When I was having chemo, there were a couple of times when I needed urgent medical attention (though I didn’t realise it at the time) but luckily had a special chemo number to call that got me into the system quickly. Do hope you get yourself sorted out. Will be thinking of you. Jo 🌻
I am so sorry you are suffering in this way & If I were in your position regarding the nose bleed etc. I would be very tempted to go to the hospital A&E as you really should not be suffering in this way. There is always someone on duty over there. I ma not so sure that your local GP would have authority for anything else except to send you as an urgent case. If you do go to the hospital make sure you take all your respective paperwork.
I do hope that you can get thing sorted before the festive season.
People over here moan about the NHS, but I do know that I can get in touch with my Oncologist if I ring with a problem & will be seen quickly. I lived in France for 8 years so do know both systems well.
The first two are classic low platelet symptoms. You don't have a full blood transfusion for those, a much simpler and quicker (as not involving blood match stuff) platelet infusion. From Dr Google it looks as if they do it below 20. My platelets got down to 23 a couple of months ago and I had the distinct impression that I wouldn't have got the infusion if I hadn't been going to be out of the country for a month and on aeroplanes. But if you have evidence of bleeding, I suspect that would strengthen the argument.
Heart pounding and breathlessness sounds to me like low haemoglobin. Writing en connaissance de cause as my already low level had reduced dramatically in the last month to 6.4 and I was whisked in for a blood transfusion yesterday. And have got to go back for more today. I'd guessed this was the case before I got to clinic yesterday as I have had it drop before, though never so low as that (I think 8 is the threshold for transfusion).
I certainly think you should see your GP, and failing that, go to A and E. Constant nose bleeding needs attention and without it you could end up worse with internal bleeding. And with les fetes coming up, you want to be at least semi-sorted before they all disappear!
Hoping you make progress soon... you'll feel so much better if you do. xx
in reply to
I meant also to say that, if you want a change from the leaf tea, the place, possibly, to find some decent sized fruits might be in an "ethnic" (green) grocery in north Limoges, perhaps in the vicinity of the mosque.
Not very scientific, I know, but both my platelets and my neutrophils, though still below normal range, have risen quite substantially in the last month, even though the HgB has tanked. I have been having a cup of the tea every morning!!
For nearlytwo weeks I've been eating dried organic papaya fruits (look like little orange road kills). I ground them up and add a big dose - probably there's about 3 to 4 fruits in a dose - into my porridge every morning. I've been taking extra B12, magnesium and B1, 2 and 6 for 2 weeks too. I already take Vits C and D every day and get a 3 monthly shot of Vit D from the GP. I have L-Glutamate and Alpha Lipoic Acid each night to get rid of the neuropathy and it's working. I know you know about this stuff so that's why I am telling you. I think it was you who put me onto L-G in the first place.
I only eat broccoli, spinach, courgettes, peppers, onions, leeks, haricot vert, parsley (fresh and frozen) turmeric, ginger, basil (dried and fresh) and oregano (oil), garlic, mushrooms (limited), tomatoes and salad stuff, avocados, organic salmon and smoked salmon and white fish, seafood (about once a month), chicken or turkey, pulses on a vegetarian-type day, Apples, oranges, pineapple, strawberries, blueberries, eggs, soya milk and soya natural yoghurt, pure sugar free organic prune juice, ginger tea and daily organic oats Irish (of course!) with ground almonds to control my hereditary high cholesterol. I changed my daily honey to agarve with stevia because of the high glucose/sugar count in honey. Occasionally some cream cheese with herbs on buckwheat crackers or a slice of gluten free wholemeal bread. Rarely I have rice or gluten-free pasta
I never eat red meat, butter, margarine or any other dairy. No gluten as I'm intolerant to it, no refined sugar except for the rare bar of +80% cocao choccy. Rarely alcohol and actually was tea total from July until about a week ago. No caffeine in tea/coffee. No fizzy drinks, no asparteme, monosodium glutamate, or any processed ready meals or takeaways. I don't eat carrots because I detest them.
The only medications I take are those prescribed for day 1, 2 and 3 on chemo days.
I don't smoke.
Jeez! What a flipping boring life I lead. I will be the healthiest corpse on a slab, that's for sure. I've eaten this way most of my life so why the heck did I get fluff balls (my new name for OC cancer) in the first place - and a rare type to boot? If they say life is a lottery then I wish they would also tell me the winning numbers before the draw. You can probably tell that I'm in a "poor me" type of mood today.
Who would have ever thought that I would get this so worked up because I've been denied chemotherapy. I must be stark staring bonkers.
You are right Mac. I forgot unsalted NUTS. But not, peanuts or cashews. What would I do without you? Now I must go check my cupboards, fridge, freezer and medicine cabinet as I'm sure there must be something I've missed...................... xxx
All i know is that platellets can go up quickly. My platellets was 90 on a monday and by thursday it was 115. It just depends on when your lowest point is. It may have reached its lowest after your chemo and the next count you have may show the pletellets on the up. Unfortunately they just have to monitor when it is going up. I know it is frustrating the wait but hopefully it will happen and you can go ahead with the last one. Take care.xx
Unfortunately, Mumtazbegum, I've gone down since day one until finally 3 weeks ago it had dropped to 94, last week down to 60 and this week down to 43. There's a downward trend I'm afraid. xxx
Like you l have had my chemo cancelled as my platelets are 74. It is such a blow as it impacts on everything you do. Keeping my fingers crossed that it will not take too long before it comes back up as chemo now booked for 30th. I was just told to rest, what joke at Xmas as there is so much to do.
Don't you just love it when women are told to rest.
There's no such word in a woman's dictionary as far as I know except for a little note which says, "How to be a good wife/partner/mother". And I quote: < Allow the men in your life to rest as much as possible as they do not understand the concept of multitasking. >
Oh Kryssy, I don't know what to say but my thoughts are with you and I do hope you manage to have a lovely Christmas. I'm sure it will be sorted out. Everything is worrying once there's a problem. It's only when you can look back that you wonder why you worried in the first place.
What a "bloody" awful time you are having. My platelets have never gone below 123 but twice I have been given blood transfusions, perhaps it was for a different reason.
I hope you start to feel much better soon and by the way your sense of humour has me laughing out loud so often.
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