I had quite an upsetting experience today and it has left me feeling really panicky and scared. I'm sorry it's a long post but I want to get it down in type while I remember it clearly.
Firstly, 6 years ago, at the age of 74 I was diagnosed with breast cancer and told I had a 15mm lump and needed a lumpectomy and radiotherapy. After reading the literature I was given I found out that if I had a Mastectomy I wouldn't need the radiotherapy and as it was going to be a problem getting there I opted for the Mastectomy. Surgeon grudgingly agreed to do it but after told me that it turned out to be a 40mm lump and that I would have needed a mastectomy anyway. I then had to have the radiotherapy too.
Two years later, at the age of 76 I was diagnosed with Leukemia (CML). No symptoms, just picked up on a routine blood test. I've been taking 400mg Imatinib and after a rocky start due to side effects I've been relatively OK. I'm 80 now and although I haven't reached Undetected my numbers had come down steadily to 0.1...
I have a stressful life as I care for my 75 yr old partner who is severely disabled and only able to get to the bathroom and back and to the stairlift when he goes for Dialysis 3 times a week. The other days he has Community Nurses come to dress his foot due to having had 2 toes amputated earlier this year.
Two weeks ago I had my usual 3 monthly blood test prior to my telephone consultation with the Haematologist. I was surprised to get a telephone call the same day as the blood test where she told me that my Platelets were worryingly low. She said they were 16,000 so I was to stop taking my chemo pills and get another blood test in 2 weeks time. That was it, nothing else. So, without any information I Googled about Platelets and was shocked that the usual figure should be between 150,000 - 450,000. I was also shocked to see that lower than 50,000 was deemed to put me in danger of my blood not clotting if I was injured and the lower it went the more chance there was of internal bleeding. I also learned that there was a lot of vitamins and minerals that the body needs to maintain platelets. This was the only thing that I felt I could do to try and improve things because I had to admit to myself that because I'd not been feeling very well I'd been cooking for my partner (who doesn't eat hardly any fruit or vegetables) but skipping meals myself because I was too tired to bother and opting for a couple of bits of toast or a few biscuits a lot of the time. I also got myself some Iron and Vitamin Pills too. As things turned out, my partner was admitted to hospital a couple of days later with a severe chest infection and he's still there so at least I was able to cook decent meals just for myself. I was also glad he went in because I felt very vulnerable with him coughing and sneezing and me with no immunity.
On Monday I had my blood test and was on pins as to what the result would be. I expected my consultant to phone me up and let me know but, no, nothing but luckily I am subscribed to The Patient Knows Best program which updates my results on my computer. I can't tell you how relieved I was to see that the platelets had almost doubled to 31,000.
So, to get to the point at last, today was my scheduled telephone consultation with the Haematologist. It wasn't the lady that had told me about the platelets originally. It was a man with quite a strong accent that was quite difficult to understand. All he said was "Your platelets were very low, don't take your Imatinib and I will speak to you again in 6 weeks". I couldn't believe what I was hearing. Although I knew what the result was I wanted to hear it from him so I asked him and he muttered something about having computer problems and I told him I also wanted to know my BCR-ABL number too and he was quite sharp and said "Give me some time please, I have one number on one computer and the other number on another computer and I'm trying to get them". Anyway, he finally told me that yes, my platelets had gone up to 31,000 and my BCR-ABL (which I don't get sent to me til later on) is now 0.33... something. I then told him that I have a pain in my left side which I thought could be my spleen so he said he would send me an appointment for a scan. I also told him that I thought 6 weeks was a long time to keep me off my Imatinib without another test so he said he'd send a blood test form and speak to me in 4 weeks then.
What upset me was that I felt like I had to drag everything out of him and that, had I not been able to interrupt him and ask the questions, he would have been quite happy to just leave me for 6 more weeks worrying and wondering what's going to happen. I think 2 months is a long time to be off my meds, what if my Platelets don't continue to increase but my BCR-ABL numbers go up?
I'm sorry this has turned into such a saga but I just wanted to get it all off my chest. I know you're not allowed to give medical advice but maybe somebody else may have some experience with Platelets.
