Thursday… Guy’s again!
Feb 1st 2007PeterMore treatment!
But what a difference from last time - no long faces, and new determination in the air! Perhaps that is my perception as my strength returns, but it has been a good day!
We arrived late morning, at the day unit, only to learn that we needed to go to the clinic first, for bloods and to see Linny. My blood counts have improved considerably in the last 10 days - platelets almost back in range, neutrophils back in range, and other indications are good. I am still anaemic - haemoglobin around 9.5 but I hope that will improve too.
We had a chat with Linny, and I signed the consent form, then it was off for a chest X-ray and then to the day unit for the donor lymphocyte infusion (DLI). The chest X-ray result was good and confirmed Linny’s listening - that there is now much less fluid on my lungs than before. (And certainly my breathing at night is much less ‘rattley’ than 10 days ago.)
The DLI was uneventful. The procedure starts with a dose of anti-histamine (Piriton - given as an injection.) This always makes me sleepy - and today was no exception - I just fell asleep while the cells dripped in! After that, I needed to wait a while to ensure that there were no adverse reactions, and then we left to come home. So now it is up to the lymphocytes - get to work my beauties! It will a take a while before any effects are noticed though - as much as 6 weeks, so we are in a waiting game - I’m afraid I’m going to have to ask you to keep things crossed again!
I also saw Mark today. You may remember him as a fellow patient who had his transplant at the same time as me. He has developed lumps on his neck, and was being admitted to Blundell Ward (ENT - where I was last September) for a biopsy. Mark says that he looks at the blog nearly every day - so Mark, I send you my best wishes, as I’m sure everyone else will too - stick with it and think positive, we are all with you.
And now for a few comments about my nutrition (oh no - not more, I hear you say!)
There has been a bit of banter about my diet and nutrition, but looking back over the last couple of weeks, there has been a sort of logic to my eating! When I came out of hospital, I was certainly undernourished, and the muscle wastage was quite scary. My stomach had shrunk, and the anti-biotics had interfered with my digestive tract anyway, destroying some of the useful bacteria that live there. Although I weighed 10 stone (the same as today) much of that was water where I had been re-hydrated. So I suppose concentrating on the protein (lots of bacon and eggs) made sense to get the amino acids to build up my own protein. I certainly couldn’t eat complex carbohydrates while my saliva production was low (saliva contains enzymes that start the breakdown process) but the simple carbohydrates like sugar gave me much needed energy.
Now as my digestive system is recovering (and my sense of smell is returning) I am managing more complex carbohydrates (bread, potato) and my taste for vegetables is returning. Certainly putting on 7 lbs of body mass is good, and my improved condition (wet nose?) was remarked upon today! I was being fitted up for an appointment with the dietician, but when I explained what I have been eating, I think that may not happen. Certainly the double scrambled egg and two rashers of bacon on a piece of toast made a great start to today!
And this brings me to another nutritional subject, Acai berries. Liz alerted to me to these berries (there is a link on the left - if you are using Internet Explorer, you will have to scroll down, if you have upgraded to Firefox or Opera, it will be available on the right) a few months ago, and I have been doing a bit of research into their properties.
Acai berries are native to Brazil, and have dark purple skins. Like other dark skinned berries, these have strong anti-oxidant properties, and acai berries are reputed to contain the most anti-oxidant of any berry. Anti-oxidants are good in that they are believed to mop up free oxygen radicals in the body, which is believed to contribute towards ageing.
However, the most interesting fact is that in laboratory studies at the University of Florida, the extract has been shown to have a an effect against cancer cells. Now it is a long way from a demonstration in a laboratory to a viable drug, and as far as I can tell, the results have not been repeated at any other laboratory. That isn’t to say that the effect isn’t genuine - lots of plant products exhibit pharmacological effects - Vincristine, part of the R-CHOP protocol, is synthesised from the Madagascan Periwinkle plant. Salycilic acid, found in some species of willow, is a powerful anti-inflammatory drug, which we know as aspirin, and if you ate enough apricot stone kernels, you would make yourself seriously ill with cyanide poisoning - they are pharmacologically active!
So there may be a potential benefit from eating acai berries. However, that brings two difficulties. If the berries are pharmacologically active, is it possible that they could interfere with the conventional treatments, either enhancing or reducing the effect? Certainly some other natural remedies, such as Echinacea and St John’s wort are not recommended with conventional treatment because studies have shown that there is an interference. However these studies don’t exist for acai berries.
The second concern is quality control. There are three main suppliers in the UK, each producing a range of acai berry products. One produces a juice, but there is a comment that the juice loses its anti-oxidant properties very quickly. Another produces a freeze dried extract (at £15/50 grams, or £135/lb!) for which they make generous claims, while yet another product is frozen pulp (at about £63 for 5Kg). The problem is that how do I know I am getting what I am ordering? What is the quality control? All I have are the claims of the companies, that are - as far as I can tell - unregulated. I could be buying cranberry pulp for all I know!
So for the moment I will watch the acai berry with interest, and there might come a time when I will try it - but that time is not now. But thank you Liz for bringing it to my attention!
So a long post - but I will end on the usual sign out - “Onwards and Upwards”