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”
14 Responses to “Thursday… Guy’s again!”
Richard on 01 Feb 2007 at 7:24 pm #
What a cheek, making medical excuses to eat bacon and sausages…….just enjoy.
Mark should take heart ( I mean positive motivation not more food 🙂 ) from your last treatment and we all wish him well and crossing for him too. Not sure how long I can keep this up as I get pins and needles at night and driving is very difficult.
Nothing wrong with cranberry all those red things seem high in anti-oxidants, so is red wine, pomegranate etc . All good stuff.
Lots of foods have various effects on pharmaceuticals we just have to rely on the manufacturer waring about the major effects. Grapefruit scares are a case in point several scares but the Health Dept advise that it is only juice (not fruit) and you have to drink it in some quantity and frequency. Having said that the advice is not easily found and the details in the pharmaceutical packs make the products seem distinctly dangerous.
Oxygen is pretty dangerous but I prefer to not do without it, thank you. 🙂
Not long until your next breakfast Peter.
Sleep tight
Richard
Elspeth on 01 Feb 2007 at 9:47 pm #
Didn’t switch on yesterday – having problems getitng broadband back, and in the process the phone socket I use next to where I use my laptop has gone on strike…..
Thank you for all the info re: diet, very interesting and thought provoking.
Richard – have you got cruise control in the car? It frees up the legs for crossing, just a thought.
Mark – very sorry for your problems, but there really was no need to come out in sympathy with Peter just because you had BMTx at the same time – I’ve seen that sort of behaviour in paediatrics too!
Peter – delighted that at last it is relevant to give the DLI (not the Durham Light Infantry, by the way) a shot (in your arm). You sound so much like your old self, it is quite heartwarming and uplifting. A friend visited last night, has been having some really rough times with advanced MDS, currently well, but she used the U&O expression too – it does work!
U&O, L’n’Hs, Elspeth OOXXOO
Jonny5 on 02 Feb 2007 at 12:51 am #
Hey Peter, now thats the spirit. It’s amazing what a little confidence can do for ones ability to fight. Good on you!! Besides you ain’t leaving me just yet as you haven’t passed on all your words of wisdom i’m sure.
Very Much, ONWARDS & UPWARDS
See Ya!!
NeilG on 02 Feb 2007 at 6:51 am #
I left a reply somewhereelse – in the wrong place.
Fantastic news about the PET scan results and the DLI – definatly O&U, perhaps we should shout it out load and in ful ONWARDS & UPWARDS.
Downloaded Opera and it is much better than IE7.
This debate about food is great just wish you’d get back to the key points about the bacan sarnies sausages black pudding beef and cottage pie and not et side tracked with all the new fangled food stuffs from foreign parts. I say stiff upper lip and all that and keep it british.
Are you still on for the Monday visit from Shackles and I?
Keep up the good fight etc
Peter on 02 Feb 2007 at 7:59 am #
Neil – yes – looking forward to it! Your other comment I think is under the previous post – but it has been read. Glad you like Opera!
Richard on 02 Feb 2007 at 8:15 am #
British bacon……….yes please pigs grown here, slaughtered, cured (dry for me) locally not just the ‘processed in the UK’ stuff. On the subject is Shackles a nick name for Shackleton as he was Irish and I am not sure about Irish bacon…….is it green?
There was an interesting programme on food last night apparently which stressed the value of dairy products and soup. so I am off to make bacon and egg cream soup 🙂
Keep it up Peter I will look at the Food and Drug Authority on dietary aids an alternative treatments
RicharX
Richard on 02 Feb 2007 at 9:28 am #
Not much so far except warnings about natural rubber products………….OOO er Mother.
Need a break now for bacon etc soup.
Richard on 02 Feb 2007 at 9:59 am #
Interesting blog here http://yourpower2be.com/blogpage/index.php/archives/149/acai-super-food-or-super-hype/
I suppose we have to know the outcomes for each of these natural products and the synergistic effects of them.
Richard
Off to the station now
Anne on 02 Feb 2007 at 10:26 am #
Great news, Peter – fingers and everything else crossed that those lymphocytes are working their socks off. Fortunately I don’t do much driving!
Lots of bacon and eggs can only be a good thing.
As you say, onwards and upwards.
Lots of love to you and all the family
Anne, Cord and Anna xx
Anne on 02 Feb 2007 at 12:53 pm #
Hi Peter
Me again – just had a thought. Have you looked at the Cochrane Library? http://www.cochrane.org and then click on the link for the Cochrane Library. They have a Complementary Medicine Field – it might be worth getting in touch with someone there to see if they have any info on Acai berries.
love, Anne
NeilG on 02 Feb 2007 at 1:58 pm #
Richasrd you’re getting carried away and no doubt will be soon by the men in white coats!
No Shackles is someone completely different as as far as I know is not dead – yet!!
Neil
Liz on 02 Feb 2007 at 4:51 pm #
Good to see that yesterday went well, and, rest assured, we shall continue to keep everything crossed and say our prayers for you this end.
It was interesting to see what you had to say about acai and, of course, you don’t want anything to interfere with your treatment programme. However, just a thought, but would your consultant be willing to have words with colleagues at the University of Florida about the subject? (I mention that, because in Dad’s case I’d read about trials regarding prostate cancer at Barts, which his consultant hadn’t heard about. The upshot is, he is now going to contact his counterpart when the results are due out in April, and was glad to have been alerted to that particular study). I say that, because when I read about acai in an American magazine, the patients mentioned who had benefitted were high grade (I know that’s probably not the right phrase) leukaemia sufferers. It just could be that your consultant might be interested….you never know.
Anyway, take care and have a good weekend!
Lots of love to you and yours,
Liz
Hilary on 02 Feb 2007 at 8:17 pm #
Why didn’t you mention acai berries sooner? Having just returned from Brazil could have brought some back with us! Did have a huge acai juice drink whilst there – quite nice to taste. Apparently NOT recommended if you have digestive problems though.
Keep improving!
Jana on 05 Feb 2007 at 5:22 pm #
Peter,
You are amazing !!! You don’t know me, I am the mother of Angela who wrote you about her father Bill Rees. He is the one that is the cancer specialist, we live in Salt Lake City Utah. He was diagnosed two days after christmas with stage II mantle cell. It has been so wonderful to read your blog it has helped me understand to some degree what is coming. You have really beat the odds, wow 6 years. I think it is your love for live and a possitive attitude which are the two things you and my husband have in common. Thats why his patients love him so much, he is so positive and gives all the hope and love he can to his patients.
A few questions because I have not been able to pull up your blog in the beginning stages. He had his first chemo three weeks ago. It was r-Chop with retuxsin. They are going to repeat the p T scan tomorrow and see if the tumor has shrunk. If so they will continue the same treatment and then do the stem cell trantsplant. If not they want to do Hyper c vac. As you know a much more aggressive treatment. What did you have? They are telling us here that the big centers are doing the hypercvac and then stem cell, but that was with patients with stage IV. So we are not quite sure what to do. Also we have been doing our homework and we have not been able to find anyone that has been diagnosed at Stage II. Does that make the prognosis any better and make a difference in his treament.
I also heard about this alcai juice. If you could give me the place where the studies are being done. I will call them and maybe my husband as a physiscain could get more info on it. I really believe in the natural foods in building you back. Also have you heard about Flor.essence. Go to florahealth.com. I’m calling them today. From what I have read it does not interfer with the treatments. But I’m going to call the big guns, to get all the info. The other thing that I know is wonderful is JuicePlus. I have Bill on that. How I found out about it is one of my husbands patients had colon cancer, she is a dear friend of mine. When she was having chemo, she could not keep any thing down. The only thing that she could tolerate was the juicePlus Jellies, usually for children, When her oncologist looked at all of her counts etc. She was exceptional. The only thing they could contribute it to was these. So Iam giving double the amount you would give a child.My husband is taking these religiously. If you want to know more about these go to juiceplus.com. He is also taking the juice plus vineyard blend which is powerful in anti oxidents. You can read up on it. Well enough, keep in touch, your amazing and you give me and our family hope. We have 5 children, 10 grandchildren and have been married for 36 years and we love life. So onwards and upwards. Thank you Jana Also my email is nanarees2004@yahoo.com. If you go to Paparees.com that will Bills blog that our daughter set up for him.