Result!

Just a quick update as it will be a long time until my next hospital visit.

I was called by the hospital with the results of my latest blood test to detect the level of leukaemic cells in my blood, and it came back as 0.04% which is brilliant!  I was told that the sample was not very good and they will redo the test at my next visit but this is still very reassuring, considering that I was at 30% when I went for transplant.

I have also heard back from my GP with the results of my cholesterol test.  It is rather curious as my total cholesterol has gone up a bit and is slightly over the acceptable level, but the increase is entirely accounted for by good cholesterol (HDLs I think) which has trebled over the past 2 years!  Therefore I don't have to give up cheese!  Yippee!

For those of you tracking my friend Michelle's progress, she had her first course of chemo and stayed in hospital for 6 weeks.  She then only managed a couple of days out of hospital before going back in to start her second course of chemo.  This is stronger than the first and making her feel rather sleepy but she was in good spirits when I saw her on Monday, and is looking as though she has been on holiday as the drugs are giving her a great tan!  Hopefully this course will get things sufficiently under control for them to proceed with her own transplant. She will have a "full" version, rather than the reduced intensity "mini" that I had.  In the meantime I am praying that all goes well and she doesn't suffer too much with the treatment.

I'm now off for a couple of weeks of scenic walks and too much food and drink - just what the doctor ordered!  I'll try to post a picture of me with my new curly hair when I get back.  No sun tan though, I have to use factor 50 all the time!

Boring!

Sorry to have to post a boring blog but nothing is happening!  I went for my appointment yesterday and my counts all looked fine so, no change!   I don't have to go back for 6 weeks!  This is, to be honest, partly because I will be away for a fortnight over what would have been my next appointment in 4 weeks time, but clearly they are not worried about me.  It may seem strange to be taking a holiday when I have been "on holiday" for the past 7 months but, of course, the family haven't and we are celebrating the end of A levels for Corina and GCSEs for Tania.

I did raise the thorny subject of returning to work yesterday and will be progressing that line over the next few weeks.  Fortunately the people at work plan to let me in gently as I do not yet know how much energy I will have or, for that matter, how much power of concentration.  The consultant did warn me that both may be severely limited to start with!

Michelle is doing fine but getting fed up with sitting in hospital waiting for her neutrophils (a type of white blood cell) to recover from her chemo, so that she can have a few days at home.  We were celebrating them going from 0.1 to 0.2 last Friday (lots of high fives!) so hopefully they continue to go up to the critical 0.5 she needs at a good rate.

Well, that's it for now. I'll try to post once of twice before my next appointment to keep you updated on things.

It's been a while

It's three weeks since I last posted a blog.  Apologies to anyone who has repeatedly looked in to find no updates but there hasn't really been much to say!  It is getting almost embarrassing how many people keep telling me how well I look!

At my last visit I was signed off for 4 weeks as long as I got a blood test done by my GP in the middle.  That is not quite as straightforward as it sounds.  First I contact the GP's office and they produce a form which I go and collect.  Then I take that form to one of my local hospitals to get the test done and they then send the results to my GP who passes them on to University College London Hospital, where I am treated.  I went to Orpington hospital last Tuesday at 8.30am (when I was told the department opened) to get the test done and was confronted by more than 30 people already waiting! 45 minutes later I was seen and told my results would be with the GP by Thursday.  That's the last I've heard of them - a bit of a change from having the results in my hand within two minutes of giving the blood as happens at UCLH!  Anyway, I'm taking the "no news is good news" view as I'm sure I would have been called if there were any problems.  I also had a cholesterol test done and, as I have not been summoned by my GP, am hoping that that is also OK. I presume all will be revealed next Monday at my next proper appointment.

In the meantime, I have visited my friend Michelle several times since she was admitted to Hammersmith Hospital for treatment of her blast stage CML.  She had six days of chemo at the beginning of the month and since then it has been a waiting game as they watch her white blood cell count drop to zero (which is necessary) and then climb back up again.  Last news was that they were finally off the ground again and she soon may be allowed a few days home before they start the whole process again.  She has been looking very well when I have seen her, and is keeping her spirits up as I would expect a fighter like her to do.  She is one of the fittest people I have ever met which should stand her in very good stead with this battle. Here is a picture of her taking her hair loss very seriously. She had shaved the lot off by the time I saw her last Friday.

One other thing which I have been thinking about a lot is the recent recommendation by NICE (those not-so-nice people who decide which drugs will be paid for by the NHS) NOT to recommend the next stage drugs for people whose CML is resistant to the standard first line treatment Glivec.  I am currently on one of those second line drugs and know that they can completely give back someone's life, not just prolong it for a few months, when the first line fails.  The final decision is to be made at a meeting on 9 June and, as you can imagine, loads of people have been lobbying MPs and talking to the press to try to get them to change their minds.  It is not easy to get much attention for such a rare cancer but these really are "wonder drugs" and are even available on the NHS in Scotland!  There is a petition which you could sign if you want to add your support although I think it will be closed very soon so please don't delay.  Here is a link to it:

http://www.gopetition.com/petitions/nice-i-don-t-think-so.html
Let's hope that NICE see sense here and change their original recommendation and agree to make the drugs available.  If not, it does make you wonder what all the amazing achievements in cancer research are actually for?

A busy couple of weeks

I've had a pretty busy time of it for the last couple of weeks, which is mainly good news as it shows that things are very much returning to normal.

Since my last post I had an additional blood test on Friday 29th April so, whilst most sane people were sitting in front of the telly with a cup of tea watching Kate and Wills make their vows, I was sitting in a car avoiding road blocks heading towards University College Hospital so someone could stick a needle into me.  I have to say that the clear roads (excluding the road blocks) were sheer joy!

Needless to say, the blood test turned out fine and I was given the go ahead to leave the country for a few days, and, equally importantly, the letter to reassure my travel insurers.  Dave and I then went off for a driving tour in France where we stayed in various chateaux and a couple of nights with our lovely friends Dale and Lynn, and their dog Chrissy.  It was great to feel normal and, since very short hair is considered chic in France, not attract any strange looks.  My Sprycel side effects have diminished so that I only feel old and achy when standing up after sitting for a while, or after walking around for too long.

On to yesterday's hospital visit where I had another routine blood test, a chat with the consultant (I'm now back to Kirsty who was my consultant when I had the transplant) and a session on the nebuliser.  All is looking fine and I have been taken off Cyclosporin completely - Yippee!!!  No more furry face and funny tasting wine!  Sadly my super lashes have already all but gone that's a small price to pay for losing all the other side effects.  I have also been signed off for 4 weeks, so long as I get a blood test done by my GP in the middle.  As that's a long time in blog world, I may post after that blood test, which will accompany a cholesterol check which I have been told to get as one of my earlier blood tests suggested that I am rather high on that front!  I hope I don't have to give up the cheese!

If you read my last blog you will have seen a link to my friend Michelle's blog as she was going on a new drug trial. Well, things have not gone quite to plan on that front as they discovered, from blood and marrow tests prior to starting the trial, that Michelle has just moved into what is called the blast stage of CML.  This is serious and she has had to go straight into hospital to start chemotherapy.  The idea is to use chemo to bring her back to chronic stage (like I was) and then to give her a bone marrow transplant.  She is being given a series of chemo referred to as Flagida (you can google it) which involves up to 4 types of chemo in one day.  All of this means that Michelle is facing a longer and tougher battle than I have had and, if any of you pray, please put in a few words of support for her.  I went to see her last Saturday and she is approaching this with her usual amazing strength and humour.  She has been an enormous support to me over the last few months and it is now my turn to do the same for her.  Go for it Michelle and beat this CML into the ground!  I'll keep you all posted on how she is getting on.

Phew, I think that's enough for now.  I'll post again in a couple of weeks.

God bless.

STOP PRESS!  I got a call from the hospital late Tuesday to say that another of my white blood counts had come back and I no longer need to use the nebuliser!  That is great news as it is not much fun and very boring.

A bit of a bumpy fortnight

It is a fortnight now since I started taking Sprycel, the drug I was on before my transplant, and it has been a bit bumpy.  As I reported in my last blog, the first day after taking it was pretty bad as I reacted  to it with flu-like symptoms. Fortunately that was the worst of it.  Since then I have been through a period of aching all over but that is gradually easing and is now just some areas (the soles of my feet for example).  It hasn't stopped me from enjoying the fabulous weather though, or having a lovely Easter weekend with lots of visitors.

I had my regular appointment today and it went quite smoothly.  The only thing of note is a slightly reduced platelet count compared with last time, probably due to the Sprycel.  Dave and I plan a brief holiday next week so I have been asked to go in for another blood test on Friday (yes, THE Wedding Day) to make sure that my counts are not on a downward trend before we go.  All else is OK, with no sign of GVHD, and I'm pleased to report that my Cyclosporin dose has been reduced yet again so I am now on one 25mg tablet a day.  This is so low that I'm also stopping a drug I have been on to counteract the tendency of Cyclosporin to raise my blood pressure.

Some of you may have heard me mention my friend Michelle, who also has CML and looked like she was heading for a transplant too.  She has been given the chance to go on a trial of a new CML drug which, if it works, may mean she doesn't need one.  She has been asked to set up her own blog to map her progress, as this is the first trial of this drug in the UK.  If you want to see how she's getting on you can read her blog here http://diary-of-a-lab-rat.blogspot.com/. Good luck Michelle, I really hope it works for you.

Knocked for six

Hi

Another slightly late post but I think I have a good excuse this time. I had my usual appointment on Monday for bloods and with the consultant, followed by my session on the nebuliser, followed by a trip to Marylebone High Street for a bone scan, followed by a two hour wait to see the consultant there.  What a day!  I got home at 9pm! 

My bloods were fine and I also had the results of another test for the level of leukaemia in my blood. Sadly it has gone up slightly from 1.7% to 2.3%.  Nothing terrible but enough for the consultant to put me back on the CML drug I was taking before the transplant, Sprycel.  It may seem strange to be a given a drug which was not working for me before but that, of course, was with my old blood.  Now I have new blood and there is no reason to think that it won't work with that.

Restarting Sprycel brings me to my other excuse for not posting yesterday as I reacted quite badly to the first dose, ending up in bed most of the day with pretty bad flu symptoms and nausea.  I'm feeling much better today, just aching all over and with itchy ears!  The good news from Monday is that I have reduced my dose of Cyclosporin again and may be off it soon, and I have been given the go-ahead to get out and about a bit more and even (wait for it) go on public transport!  I have been warned that I will catch more colds than I used to but that has to weighed up against getting my life back to some sort of normality.  I'd already done a bit of that by going back to church for the first time on Sunday which was lovely.

The only other thing to report is my Look Good, Feel Better session a couple of weeks ago.  There were about 15 ladies with various cancers there at a variety of different stages of treatment.  We were run through a session on skin care and make up (a bit like teaching your grandmother to suck eggs but I picked up a few tips and an updated approach to my make-up) with numerous therapists to help out. It was very nice to be pampered a bit and to be sent away with a bag of goodies donated by cosmetics companies.  Things were a little awkward when we got to the eyes as I was sitting there with my lush lashes and eyebrows, surrounded by women who had neither!  I'll definitely miss the super eye lashes when I stop the Cyclosporin.

Next visit to the hospital will be on Tuesday 26th due to the Monday being a bank holiday so I'll update you then.

Long time no see

Sorry I'm rather late in updating my blog.  I had a very long hospital day on Monday (home after 7.30pm) and yesterday, having done a couple of hours of gardening, spent the rest of the day in an exhausted blur (or asleep)!

My regular appointment on Monday went well, with all my blood counts looking good (they almost look normal!) and, as the rash has been behaving itself, I have had my Cyclosporin dose reduced a little.  I felt a bit guilty chatting to a fellow patient who had his transplant two weeks before mine who is still struggling with neutropenia (very low white cell count) and having to get his wife to inject him with a stimulant to get the cells to grow.  He has a different form of leukaemia (CLL) which may account in part for the difference.

After my regular appointment I had to go to Marylebone High Street for another appointment ("girl stuff" - 'nuff said).  As there was a big gap between appointments I had a good wander around the very posh shops in Marylebone High Street.  Lovely but does anyone really pay £115 for an umbrella?  That appointment went well too and  I have to return in a couple of weeks for a bone scan, meaning another long Monday of appointments.

This afternoon I have a treat I have been looking forward to.  Ladies with cancer are invited to sessions called Look Good, Feel Better, which are sponsored by the cosmetics industry and are about regaining your confidence in your appearance (loss of hair etc doesn't do much for it I can tell you).  See, it's not all bad!  I'll tell you more in my next blog.  I even get a car to take me and bring me back, all part of the package I'm told.  I hope it's the stretch Audi that took me home on Monday again.  I am not really at a holiday camp - honest!

Thanks for the comments about the purple wig, but I don't think it will be appearing too regularly!