Living with CML - Chronic myeloid leukaemia: Living

latest PCR

Thu, 14 Aug 2008 11:17:04 GMT

Well back from my regular trip to the Hammersmith to see Dr M, latest on the PCR is 0.41 down from 3 months ago of 0.49 (not the 0.4 I might have said). I was a little concerned that it had only gone down by 20%, but Dr M didn’t seem to worried when I quizzed him, and the fact that it was still going down well coupled with all my other CBC counts being OK and my good tolerance to the Imatinib was an OK thing.

Also it was the end of my 3 month trial and had some extra tests including an ECG and an echocardiogram as well as a sight test that I think I did quite well with.

Besides that not much to say on a personal note, except go off on holidays to Cley in Norfolk tomorrow

Rob

Technorati Tags: PCR, CML, Imatinib

a trip to the hospital but nothing to do with the CML

Fri, 13 Jun 2008 13:23:54 GMT

Well actually my 3rd trip in 7 days, as last week I managed to break my nose by not catching a ball during a softball, they are not very soft!!! There was lots of blood, swelling and bruising, which has gone down a lot. Today was a quick meeting with an ENT specialist to check me over and to book in for having it properly straightened, a week after next. So will back again then, when I will be put under general anaesthetic and my nose put back to (or as close as possible) to its previous shape.

Being a regular now with hospitals, I just grab a coffee and take a book to read while I wait at the various waiting rooms. You have to have patience (no pun intended) with the NHS…

Rob

Latest PCR 0.4

Wed, 21 May 2008 16:15:02 GMT

Well just back from the Hammersmith for my regular 3 monthly check in and the good news is that my PCR (from my previous samples in March) is down to 0.4, from the previous 1.07. This is great news and basically means that everything is going extremely well and should hopefully continue to do so for the future as well :)

It also means that I have archived a Complete cytogenetic response or CCR for short, which means that I have archived the 2nd stage of remission with CML (see the end of this FAQ for more info).

Also gave about 15 bottles of blood for the clinical trial i mentioned earlier as well as answered numerous forms about side effects and my current mental state and outlook on life....

So a good trip with good numbers :)

Rob

Technorati tags: CCR, Leukaemia, CML

Quick personal update

Fri, 25 Apr 2008 13:07:22 GMT

Been a while since I have written anything on this blog. Well in truth there hasn’t been much to tell, life goes on, I take my tablet every day, I don’t have any side effects (except the general tiredness).

Today was a quick check in with Dr H at the RBHS, all counts still in the normal range and largely uneventful trip except for the fact that I could get 3 months of Imatinib at one time, instead of the monthly amount I get. This is because I have agreed to be part of a clinical study…

Long Term Therapy With Imatinib: Development of Late Side Effects and Compliance to Treatment

This won’t have any effect on me directly, I still take my drugs in the normal way, just that they can see how often I am taking it and what that means to the way my body is reacting to the drugs. Some extra tests will be carried out at the start and the end of the 3 month trial, but shouldn’t really effect me at all. I was more than happy to volunteer.

Tonight we are all going away for a night down to the south coast, staying at the cottage at the Crab & Lobster, and then going to watch the racing cars at the Goodwood

Rob

Technorati Tags: CML, Leukaemia, Imatinib

Growing Old and Grey Gracefully.

Wed, 26 Mar 2008 14:44:10 GMT

So no Just For Men for me then :)

'A second review of the evidence on personal use of hair dyes found some studies suggesting a possible association with bladder cancer and with lymphoma and leukaemia.'

Hair dyes found to increase cancer risk

however the report does also states

"But the panel found that the evidence was inadequate and concluded that personal use of hair dyes was “not classifiable as to its carcinogenicity to humans".

Rob

Technorati Tags: leukaemia

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Dragon Boating in Wales...

Wed, 26 Mar 2008 12:24:33 GMT

on odd title for a blog on leukaemia but I spotted this today

"A CHARITY that helps leukaemia patients find bone marrow donors is holding a day of sponsored dragon boat racing to raise funds for their work.

The Anthony Nolan Trust is putting on the event on June 8 at Atlantic Wharf, Cardiff. No experience is needed to take part and anyone wishing to enter a team in the race should ring 01202 600629 or e-mail sharon.wells@anthonynolan.org.uk"

Race needs you - icWales

So if you are interested in doing a spot of dragon boating and you are in Wales (or indeed happy to go to Cardiff) then follow the info above.

And if you can't make the Cardiff event there are a host of other Dragon Boat events for the Anthony Nolan Trust around the country, plus other fund raising activities

Rob

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Count your white blood counts using a mobile phone

Wed, 19 Mar 2008 11:18:28 GMT

Wouldn't it be great if you didn't have to always go to the hospital to have your blood checked, well maybe in the future you won't have to and it can be done via yuur mobile phone and a 60x microscope attachment...

'It was designed by researchers at the University of California, Berkeley to provide a cheap, reliable way for doctors to diagnose patients in remote areas over the phone.'

OhGizmo! » Archive » Cell Phone Microsocope Can Diagnose Your Parasites

Rob

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Philadelphia - Great Sandwiches Shitty Chromosones

Mon, 17 Mar 2008 12:17:51 GMT

I have just ordered one of these t-shirts from Mikes Cafepress store www.cafepress.com/8232

Thanks to Rob who posted it on his blog :)

Some other nice little items on his store so check it out, should take a couple of weeks to arrive

IMO having a healthy sense of humour about this battle with CML helps me cope with just getting on with life in general.

Rob

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2 out of 200

Fri, 29 Feb 2008 14:27:04 GMT

That is the result from the latest FISH test (Fluorescent in situ hybridization) which I received today from my trip to the Royal Berks. Which means out of 200 cells tested only 2 are Leukaemia cells...this is pretty much in line with the 1.07 PCR (Polymerase chain reaction) test which looks for a lower level of the disease. That to me is a good sign as both tests are showing a very similar value and one isn't widely different.

Talked a little about the research mentioned earlier and the need for 3 months Imatinib at one time on my next visit, and Dr H is going to talk to the pill counters to see if that can be agreed.

Not much else, just trying to get everything sorted for my Seattle trip leaving on Sunday...

Rob

Technorati Tags: CML, Leukaemia, PCR, FISH

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PCR down to 1.07

Wed, 27 Feb 2008 21:26:50 GMT

...so not quite the 1.00 (2 log reduction) that I was looking for, still good news, still going down, still the other blood counts all within normal range. This BTW was based on the last test from my recent bone marrow sample.

This time things went quite smoothly at the Hammersmith, in and out with 1:15 mins, unlike last time where I was sat around for a couple of hours.

Talking with Dr M 3 main things came up, besides the PCR number...

1. Looks like they want to do some research about how people react to Imatinib, so I have some stuff to read up on. Pretty sure I will volunteer as it won't put me out too much and if it leads to a better understandings then fine. Biggest issue is that on my next visit I have to bring 3 months supply of Imatinib and the Royal Berks only give me 1 month at a time.

2. Although it now looks unlikely i will need a stem cell transplant, I met up with a nice lady who I gave my sisters details to , again. So hopefully that will now happen

3. We also discussed fathering a child whilst on Imatinib. It seems the advice has changed to that of, there is no evidence of any problems and the limited research points to no problems. However that doesn't give any guarantees. So that is wonderful news andone that Sarah and I will have to talk about in more detail.

Rob

Technorati Tags: CML, Leukaemia, Imatinib

Busy Busy Busy

Mon, 25 Feb 2008 17:11:40 GMT

Well how time flies, I have been so very busy at home and work that the blogging has dwindled over the last few weeks.

I accepted a new role in the company I work for, which I am really super excited about however they are sending me over to the US (Seattle) for 2 weeks to meet the new team and get some intense training... fly out Sunday so it has been a bit of a mad rush getting everything in order with my old role as well as trying to work out what my new one is going to be like.

So with that in mind I have been trying to get a lot of time with Sarah and Felix at the weekends and evenings, which has left me very tired.

Added to that I have a trip to the Hammersmith on Wednesday to check up on status etc, will get my results from the last visit, and then on Friday a check in at the Royal Berks and a new prescription. I am hoping the downward trend in numbers is continuing and I am under the 1% value in the PCR tests.

Rob

Strong bones and bent needles

Tue, 05 Feb 2008 19:30:40 GMT

Today I had another bone aspirate, where some of the liquid is taken out of the bones to do some test to see how well the Imatinib is doing.

Suffice to say it was a lot better experience that the last time I did this 6 months ago.. but it couldn't have been much worse. I mentioned to the Dr about the problems form last time and I think I may have got an extra shot of aesthetic...it took 2 attempts this time to get enough out, the first attempt resulted in a bent needle due to my 'strong bones'...there was a couple of stabs of pain but nothing to compare with 6 months ago. That I can live with

So a lot less discomfort afterwards as well, plus a lot more mobility.

Rob

Technorati Tags: CML, Leukaemia

Weekend update: Pictures, Croup and Hypochondria

Mon, 28 Jan 2008 17:44:20 GMT

So we had a good weekend up until last night, when Felix woke us up with a real hacking cough, and we spent an uncomfortable night with him either snoring, coughing or shuffling in our bed. He slept well but Sarah and myself didn't get too much decent sleep. Anyway turns out that the little fella has something called Croup , which according to the wikipedia link is...

" respiratory disease which afflicts infants and young children, typically aged between 3 months and 3 years. "

and

"Croup is characterized by a harsh "barking" cough and sneeze, inspiratory stridor (a high-pitched sound heard on inhalation), nausea/vomiting, and fever. Hoarseness is usually present."

We where really worried last night as he was struggling to breathe but seems fine, but apparently it can go on for another 7 days

Anyway on a better note we had a good weekend that seem to fly past in the relatively nice weather we had, below are a few pictures we took (on my phone, so not the best resolution) yesterday afternoon at Marlow, on the Thames.

on the hypochondria front, I have recently been in a phase of thinking every little thing that is amiss with my body and mind is a symptom of something bigger, either something to do with the Leukaemia, the drugs or something else. For instance I have had a nasty sore throat for the last week and whilst not being able to sleep last night I had conviced myself of a link somewhere, to the extent the first thing I did was look on the Internet to see if there was something I should be worried about. Of course there wasn't...

Rob

Technorati Tags: Croup, Leukaemia, Hypochondria

1 year anniversary

Wed, 12 Dec 2007 18:01:30 GMT

I had almost forgotten that today is my 1 year anniversary of diagnosis with CML. So much has changed in that year, yet so much has remained the same. In trying to get my words down on this entry I am struggling really to work out if this anniversary is of any significance at all...

As if to explain why so much is still the same as for 365 days ago, take today. I have got the week off work so have a long list of things to do on my list (my life is organised by lists at the minute). Felix slept in till 7:45 and we had breakfast together and then headed out, we dropped Sarah off in Wokingham to do some Christmas shopping and Felix and myself wen to the Lookout in Bracknell, where we had great fun playing football and on the adventure playground for over an hour. Then we headed back to Wokingham for a Pizza lunch and then home, a trip to the tip and then the rest of the afternoon putting in some extra roof insulation. Not a thought to CML, Imatinib, hospitals or the future, further than the next couple of hours. That is pretty much the same as before, however I wonder if I have become more of a living for the moment person...

Yet so much has really changed, it is quite strange. I know I am going to take that little golden pill in the next few hours or so, but I can cope with that. After getting the latest numbers last week I have been on a positive cycle of thoughts with regard the future. This coupled with our house finally falling through and work levelling off has reduced the stress levels considerably. I am not actually going to list the whats changed because that might be a very long entry, but suffice to say I have done some things I would never have thought about doing in the past, I have done some things differently and in some ways I have not done other things that i might have a year ago.

A year ago, upon hearing from my GP that I probably had Leukaemia I did seriously thing that I might not be here today, or if I was I would be a totally different person. But I am hear and I thing largely the same person I was before. A year ago today I was struggling with that diagnosis and what the future would hold for me and my family, and the later was my biggest fear about not seeing Felix grow up and do all those things you hope your children will do and not living out the rest of my life with my wonderful wife (I don't think she reads this so this is not some ruse to get brownie points ;) ) Sarah, who has been amazing through out this whole journey. I have mentioned before that it is sometime harder for the people close to you to cope, and i think this is still true. The support from friends and family, and for people I have met online via this and other sites has been of tremendous support to us both.

I am looking forward to the future, and excited about doing all those things that there are to do and experience in this world, and doing them with Felix, Sarah and all my friends and family.

Rob

PS - when I started this entry I thought I had nothing to say, but reading the above ramble it looks like i did, and my head is buzzing with other stuff that I just am struggling to write down, so maybe another time

Technorati tags: CML, Leukaemia

Not Going to Edinburgh now...

Fri, 16 Nov 2007 13:45:09 GMT

We had originally planned to go up the CML Conference in Edinburgh (paid for tickets etc) but for various reasons we have decided not to go now, which is somewhat of a shame as i was looking forward to some of the people I have met virtually over the last 10 months.

Reasons we are not going.

1. We haven't got around to booking flights, and now the price is high for two of us traveling up, plus with hotels etc it makes it an expensive weekend.

2. Its our wedding anniversary tomorrow (6 years), and although we had decided that the trip to Edinburgh was going to be our celebration, we decided that a conference on CML maybe wasn't what we both wanted to be doing for that, so we are heading off to South Wales in stead for some R&R.

3. Been under a lot of stress recently, work has been no fun at all with one thing after another adding to each other which has resulted in me feeling pissed off. Plus we have been trying to buy a new house since August and it looks like it is going to fall through.

So maybe next year

Rob

RBH update

Fri, 02 Nov 2007 13:16:09 GMT

So everything blood wise is looking good, all the numbers are within the normal range

This time it was Dr H, he did my first bone marrow biopsy, and it was a lot less painful than the second. We discussed a few things

1. Have my sisters been tested yet, No they haven't. I am going to mention it again at my next trip to the Hammersmith and if nothing happens then Dr H is going to take control and get it organized for me.

2. Bone marrow Biopsy #3, looks like that will be early Feb 2008, really looking forward to that, NOT.

3. Stay on the same dosage 400mg of Imatinib and come back in 2 months (January 2008), he gave me a prescription for 8 weeks, and I thought Yippee no need for an extra trip and prescription or a month, however the pharmacist only gave me 4 weeks worth and a little slip and said come back for more when you need them

We are traveling up to my parents in Leeds for a long weekend, back on Tuesday. Mainly so Felix can get spoilt but also to say hello to everyone :), maybe some time to ourselves and hopefully some firework action, so no updates for a while

Rob

Technorati Tags: CML, Leukaemia

Trip to the Royal Berks tomorrow

Thu, 01 Nov 2007 17:12:31 GMT

Seems strange I haven't been to see the Dr's at the Royal Berks for 2 months, it was only 7 or 8 months ago that I was going weekly for tests and checkups.

I am not expecting anything to have changed much, and for them to hopefully say carry on with current dosage and see us in another 2 months...

Rob

Getting fit...

Mon, 29 Oct 2007 15:58:25 GMT

One of the things that I had been concerned with was my all round health (the CML excluded). I have moved to a much healthier eating and reduced alcohol intake since DX, but my fitness levels had dropped big time. In fact I don't think I have done any concerted exercise for a good year, the CML and tablets combining to make me very tired and weak, plus my free time being somewhere around zero gave me little chance or desire to do anything about it. But it was always a nagging thing in the back of my head, knowing that the better physical shape I am in the better I can battle against the CML.

But a couple of things happened recently:

Firstly when on holiday we took a trip to Martha's Vineyard, and hired some bikes (from Marthas Vineyard bikes), including a child seat for Felix, and we all had a great time biking around for a couple of hours on the excellent bike routes around the coast. At first we where not too sure Felix would like it, but he loved it and so on our return I ordered a bike seat from Wiggle.co.uk (excellent next day service btw), and since then we have done a number of quite rides out and about. Having an extra couple of stone plus does make it hard going, especially going up hill, and especially when he falls asleep. But it helps with my efforts to get a bit fitter.

Secondly, at work there is a new building which has a gym in it, , and is free for the first 3 months, so have joined up and have been a number of times. This has been hard work, just trying to pace myself, having been a regular gym goer some years ago that has been the hardest thing. The first night after the intro I had terrible cramps in my knees but nothing since then and I have been steadily upping my routine. Still very low easy, but I don't want to be over doing it, and want to see what I can do. I did have to fill in numerous forms and talk about the CML and drugs during my induction, but the staff where extremely understanding and are helping me get the most out of my time there.

These 2 things combined have been great, and I feel very alive after exercise, even the light workouts. Being able to do a bike ride with the family has also been a wonderful feeling . Just hoping that I can keep it all going through the winter, being fit and healthy can only be a positive thing for anyone and for someone with CML it must be very beneficial in helping the body and mind cope.

Rob

Can you eat someone with Leukaemia

Tue, 23 Oct 2007 16:01:55 GMT

So no posts for 2 weeks and this is the best I can do! ok so I was pushed for time....

It is amazing what pops into my inbox, of which 99% (including the work related) can be sent straight to the deleted items...but this snippet caught my attentiona nd made me smile for a few moments

McSweeney's Internet Tendency: Thirty Illnesses, Sorted According to Whether or Not You Can Eat the Victims.

So remember to let the cannibal who has eyed you up for a tasty snack that you have Leukaemia and you might get away uneaten

But remember the old adage of not believing everything you read on the Internet...

Rob

Technorati Tags: Leukaemia

Some holiday snaps

Mon, 01 Oct 2007 19:29:02 GMT

hardly seems like yesterday but it was a month ago that we where on holiday in Massachusetts...and after a few requests here are some of the better pictures we took with my trusty 4 year old digital camera...

Felix at Boston Common Frog Pond

Felix playing at the wonderful Boston Childrens Museum

eating at Ben & Jerry's, something that Felix got into...

on the duck tour 'quack quack'

first steps into the water on the beach in cape cod...

Racer Point at sunset

the next Tiger Woods at Pirates Cove adventure golf

make sand castles daddy, I am not sure who had most fun

swimming with mummy

at the Dr Suess, National Memorial Sculpture Gardens

Upside down baby at the wonderful Eric Carle museum of picture book art

Rob :)

Eat More Dark Chocolate

Mon, 01 Oct 2007 09:05:55 GMT

We had a great weekend just passed.

Saturday Sarah was playing netball so Felix and I wandered into Wokingham to do a few bits and bobs, posted a parcel and a few letters, quick lap of Waitrose for a few essentials (bread, croissants, newspaper etc ), then to the park via a coffee and triple choc muffin (Felix's choice honestly) at the brown bag. The little park in Wokingham is great with plenty of things to do and place to run around and play football, and get the little fella nice and tired, not to mention the old man.

In the afternoon we went to see some old friends Hannah and Xavier who live in Hayes (south east London), they had not seen Felix and it was a great evening/afternoon. Felix slept the entire way there about 80 minutes and so was a little grumpy when we got there, but livened up after he got used to his surroundings. The men folk played football in the garden whilst the women chatted about, well women things I guess . The trip home was uneventful.

Sunday we headed over to Abingdon to the Great British Cheese Festival, and a nice day out in the sunshine, we sampled lots of cheese, Felix liked getting the cheese on a stick and feeding Sarah or I which he thoughts was hilarious, and going round the various stalls. Again we played football and on the various playground activities, including the mechanical diggers, hopefully some pictures later. We are not cheese connoisseurs in any way but wanted a day out and had spotted that our favorite Chocolate shop Chococo was there and we planned to stock up, but they had sold out the day before except for some plain chocolate buttons, which seemed to go down well with everyone.

And talking of chocolate I spotted this little snippet...

Gold Tablet Blog Day » Chocolate ‘aids fatigue syndrome’

"Dark chocolate is high in polyphenols, which have been associated with health benefits such as a reduction in blood pressure.

Also high polyphenols appear to improve levels of serotonin in the brain, which has been linked with chronic fatigue syndrome and that may be a mechanism"

Before and since DX I have been very tired, and have been fatigued most of the time, especially in the evenings after a busy hectic day, not really sure if it is the CML or the Imatinib. This is very frustrating as want to be more active and fitter but know that when I do some exercise I pay for it later...but maybe if I ate some dark chocolate everyday this might help

Rob

PS - although Sarah was a little disappointed about there not being any chocolates left, she should be receiving some from Felix on Wednesday as a birthday present (he is 2 years old!!!! on the 4th, the next day), that I ordered last week.

Technorati Tags: Chocolate

Hello from Dublin

Thu, 20 Sep 2007 16:29:06 GMT

Been a hectic week on a training course in Dublin, so little to catch up on the blogs and reading all the stuff on CML stuff that comes into my inbox...

This is the longest I have been away from Felix in the 2 years he has been around and it is a very strange experience, it is amazing how much I miss the little fellow (and Sarah of course), which of course will make seeing him again all the more fun.

Rob

Sunflowers

Mon, 10 Sep 2007 20:15:33 GMT

We got some sun flower seeds from our good friend Chris 'Ken' which we planted earlier this year, coming back from holidays they have started to bloom. We never got around to planting them in the ground and hence are not that big as they are still in some large pots. But all the same very pretty, and as you can see very well watered by Felix...

Rob

Back from holidays

Thu, 06 Sep 2007 13:59:09 GMT

Well we are back, having had a great time in Boston, Cape Cod & other parts of Massachusetts.

Hope to post some pictures soon.

Have an appointment at the Royal Berks tomorrow so hope to get results of latest tests.

Rob

Thankfully its gone...

Fri, 17 Aug 2007 14:23:33 GMT

... the pain that is, by Saturday last week it was all but gone and only a mild soreness is left. A week later and even that had gone too.

Not much has been happening on the CML front, and from day to day, week to week there is not much to report. But you never forget about it, I have my daily reminder of a tablet to take, but there are times during the day (every day) that I think about it. Sometimes it is just as though something has popped into my head and it vanishes almost as quickly, and on other days it is something that lingers longer on the mind. It is not a depressing or downbeat set of thoughts and it is quite hard to articulate exactly what those thoughts are. They come and go at the strangest of times...

So we have been busy on a number of things over the last 10 days. We have had an offer accepted on a new (to us house) which is close by, it is bigger and in the perfect location for us so we are very excited about hopefully moving in, we have no date yet and are mindful of the fact that not all house moves go through...

We are also busy prepping for holidays to Boston and Cape Cod, we fly out on Tuesday and will be a great adventure for us all, especially as it will be the first time Felix as flown..

Talking of the little fella here are some pictures taken (on my mobile so apologies for poor quality) at the local paddling pool at California Country Park with Sarah, from last weekend when it was a little bit warm in the UK , which is a bit of a novelty this year.

Rob

Technorati Tags: CML, Leukaemia

The pain has gone but it is still sore...

Fri, 03 Aug 2007 15:38:53 GMT

and uncomfortable to do things like bending and lying down, so have had a couple of nights of poor and broken sleep which is adding to my general levels of fatigue...

Even a couple of medicinal whiskeys (weds was Old Pulteney and last night a large measure of Isle of Jura) didn't help much, although it was enjoyable to try, and I am sure will do that again tonight :)

I am expecting like last time to feel the soreness for a good week or so.

Thanks for all the kind words via email, and yes Sarah is fine too.

Rob

Ouch! that hurt....

Thu, 02 Aug 2007 10:14:40 GMT

Yesterdays bone marrow biopsy was a lot more painful and longer than the last. Dr O who was doing the procedure said at the beginning that it should be nice and easy as it was just an aspirate rather than the pushing and pulling of the previous one which took a big chunk of actual bone marrow.

Just before the start Sarah excused her self, and went hunting for some chocolate, as normal I was on my side with my knees up near my chest, the area was cleaned and the local anesthetic applied, all well and good. Then followed about 30 minutes of pain and sweating as the Dr tried to get enough out of my bone to make it worthwhile, which was proving hard to do. She tried different needles and 3 different entries and eventually got enough out, but is was very painful, and she kept apologizing as she moved the needle about inside me. It was pain like I have not felt before, really sharp right inside my hip, I have broken bones before and dislocated my ankle and it was on a par with them. I actually got an extra shot of anesthetic half way through but it didn't make it any better.

During the procedure I could feel the blood dripping down my back, but it was an odd sensation as it felt cold, due to the anesthetic I guess. I started to shake and shiver after the end as I started to relax and that took another 20 minutes to go away. So once done and patched up Sarah came in and fed me some of the previously mentioned chocolate, however she must have seen some of the blood and started to feel faint, and nearly passed out. So she ended up on the bed next to me, feeling rather sheepish and apologetic, but felt much better after a cup of tea and some biscuits the wonderful nurses brought us both. My wounds took a while to stop bleeding but eventually we where allowed to leave.

On the walk through the hospital I had to let a 70 year old bloke with a dodgy knee past as I struggled up a slight slop as he was faster!, but we exchanged pleasantries as we passed.

The rest of the day I spent relaxing and taking pain killers, which as it was nice and sunny was very relaxing. Today I am still sore and didn't sleep to well last night but it is getting better.

Next time I will consider a general anesthetic as the pain was so great, also I will cut my finger nails as the scars left in my hands from where I clenched them took 12 hours to go away! Also I need to understand why getting enough out was such a problem.

Rob :)

Technorati Tags: CML, Leukaemia

"A fantastic response..."

Thu, 12 Jul 2007 14:09:29 GMT

Was the words used my Dr M , who I have just talked to about my last tests from the Hammersmith Hospital about a month ago.

He said I was down to 4.4% in terms of number of the number of cells that had the Ph Chromosome (the assumption being that 100% had it when I was diagnosed)...

So for being on Imatinib for 4-5 months this is a great response he also said, I do always go back to the fact that it was caught early from a regular blood donation and I thank my lucky stars about that...

I'll need to have another bone marrow biopsy some time soon to validate the numbers, and have a 6 weekly check up at the Royal Berks tomorrow where will try and get sorted, but for now I am very happy and may do a little celebrating tonight

Rob

Technorati Tags: CML, Leukaemia

Insurance Update - don't go to the USA, Canada or The Caribbean

Mon, 09 Jul 2007 16:53:53 GMT

OK - so i have tried numerous insurance companies including most on the excellent cmlsupport.co.uk travel FAQ , and I have been rejected due to my pre Existing Medical Condition...

So even though I got lots of good recommendations I have still been struggling to get insurance, and it is mainly to do with where I am going The USA. But after talking to a very helpful chap (Myles) at Freedom Insurance, who was able to give me a lot of advice as to why I was being rejected... He has been able to give me a quote of £700 for my 2 week trip, which would give me £5M cover if anything went wrong. Why i got pushed back from everywhere else was also likely to me asking for an annual policy rather than a one off. So need to give that some serious thought, what could go wrong, probably not a lot, however that is why you get insurance for those just in case scenarios...

Apparently getting cover for The USA, Canada or The Caribbean will be tough and they have a 4* escalator or the premium, so looks like future holidays will be elsewhere in the world, which is fine by me as there is plenty of it which I have yet to visit

Rob

Technorati Tags: CML, Leukaemia