Living with leukemia

Almost a year

2019-09-16T12:28:00.000+02:00

Well I have now been off the medication for almost a year now. Last test result was negative. as I keep saying this is one test you want to fail.

I asked my doctor if I was in remission and he has said not yet. I have another clinic visit sometime this month.

The hardest thing now is trying to get an appointment.

So how do I feel?

I feel very tired at least a couple of days a week. So just have a nap, but sometimes the nap turns into a full hours worth of sleep.

Can't tolerate much alcohol, mind you I have hardly drunk any in 5 years. Did drink three cans of beer last month and it took me two days to recover, no headache but had the other symptoms of a hangover. Have discovered that the alcohol free beer by Heineken tastes great, some just taste very hoppy and not really like a beer at all.

Need to take vitamin B12 about once every 14 days or so to help with the tiredness.

Apart from that life is good and getting better.

Did split up with my partner of five years last year but I am over that now.

Good news. Yeah

2018-10-11T14:23:00.003+02:00

😊 I have had good news.

My next clinic visit will be in 5 month time and if that one is negative, I will be on monthly checks and can come off the medication I am on.

Also the Psychologist has been great, and I am actually looking forward to my visits. Mind you after a 50 minute session I feel really tired, my psychologist says that's normal.

I would definitely recommend anyone to go to one just to help with the stress and problems caused through living with Leukemia.

Seeing a Psychotherapist

2018-09-13T11:31:00.001+02:00

I have taken the decision to see a psychotherapist.
I think anyone who is going through any form of cancer treatment should do this. As it may help to cope better with general life.
My first session is next week.

Back Again

2018-09-12T12:25:00.002+02:00

Its been almost 4 years since I wrote anything on my blog.
But I had a lot of stress with my divorce. It was finally sorted out this year.
My blood tests have gone up and down over the course of the last 4 years with a few more negatives then I would get a couple of positives. Any way my last two blood test results have been negative. Well one was negative and the other was two few samples to give a reliable reading, so essentially negative. As I say to people this is one of those test you actually want to fail.
Off to the clinic soon so hopefully I will report some good news. Last visit the doctor said I needed 18 months with negative results, then another 6 months on the medication before coming off of it. But he did say the bad thing then is you will need a checkup every 2 months. So that if need be I can go back on to the medication without too many problems.

New Results

2014-02-18T11:31:00.001+01:00

What can I say. Its ..... Negative yeah :)
Just need at least another six months of those.

Update at last

2014-02-16T19:34:00.001+01:00

Its been almost a year since my last post.
A lot has happened since then. Me and my wife have separated. She wanted the divorce, not me.
And I think as a result of the stress caused by this my blood tests have been going up and down. So I get a negative one month then next month 0.09 then 0.034. My last one was negative and I am just currently waiting for the results of the next one. I should get this sometime next week.
I did ask the specialist if stress could be a factor and he seem to think not. But I reckon it is, as we all know the more stressed you are the more you are likely to become ill.
Also in the last three months I have had at least 4 colds (or is it the same cold and it just hasn't really left) and more cold sores than I have had in the previous two years.
But life goes on, I am looking at writing a few apps for the Android platform which will be quite cool. My first will be a game. My kids like the prototype version :).
That's about it for now will try and be a bit more regular with updates etc from now one.
Bye for now.

Blood Test again

2013-03-25T12:30:00.001+01:00

I feel like a pin cushion. Getting a bit sick and tired of the frequent blood tests.
At least this one didn't hurt as much as the previous one. Still hurt, but not as much. Its strange they never used to hurt and its the same person doing it.
Just have to wait 15 working days for the results, and fingers crossed the results are less than 0.09.

Better late than never

2013-03-23T16:58:00.001+01:00

Went to the clinic with a new set of results on Tuesday 12th March.
They where a little higher, previous ones where 0.03 this one was 0.09 so I have to go back in a months time to see if its a glitch or I need to have my medication changed to something else. They may also do a bone marrow sample, oh deep joy at the thought of that. The cause of the glitch maybe that I had a very bad cold, took about 4 to 5 days to clear up. The biggest problem is not really being able to take extra medicine, especially paracetamol based. As both paracetamol and Glivec (the Leukemia medication) are both processed by the liver. There has been several cases where someone has died while on Glivec and took paracetamol.
Well I go on the 25th to have a new blood test and back to the clinic 4 weeks later, I will get the results about the 17th April then the following week its of to the clinic again. So fingers crossed.

Clinic Visit

2012-12-18T18:38:00.000+01:00

Looks like I've stabilised still positive for the Philadelphia chromosome. Which means no increase in the number of Philadelphia chromosomes since last time or decrease either. Have another test in about 3 months time. I guess at that one they will decide if I need a bone marrow sample taken.
Did a small bit of Chrimbo shopping after seeing the Doctor. There is now a Primark in Alicante and its only 5 minutes away from the clinic.

Yeah blood test

2012-11-28T22:25:00.001+01:00

Finally got my blood test done and also booked my visit to the clinic for December

Chemists are on Strike

2012-11-15T21:57:00.001+01:00

The chemists are on strike. Which is causing a few headaches.
Been trying for a week now to get a blood test. Hopefully next Wednesday I will be able to get one, as I pick up my medication, which came in today, but I was unable to pick it up. They did say they would open especially for me tomorrow if it was urgent which I thought was nice.
Still feel tired around lunch time, and sometimes I need to lie down.
Not much to say really until I go to the specialists in December. So fingers crossed for that one.

Drugs and Doctors

2012-09-22T12:25:00.001+02:00

Went to the clinic last Tuesday with my blood test results, everything is going well and the doctor is pleased with my progress. Its been almost a year since I was diagnosed leukemia.
Also got my new batch of medicine this week as well. Having to order at least 8 days before.
My next appointment at the clinic is in December, so will need to have a blood test 2 weeks before this.

2012-08-22T19:09:00.000+02:00

As I haven't posted for a while I thought I would write something today.
Summer is here. Its hot and sticky and about 32C outside.
Did have some fun while getting my medication, I now have to make sure I order it at least 5 days before I need it, rather than the day before. Which in real terms means a week. Order it on Monday so I have it for next Monday. I now make sure I have eight tablets left when I order just in case.

Had another blood test last week, so waiting for the results of this. It looks like I will be having one of these every three months. The test is looking for the Molecular response to the treatment and is often reffered to as the BCR-ABL blood test. It can detect one leukaemia cell in up to one million (1,000,000) normal blood cells. It does this by measuring a substance (transcript) made by the BCR-ABL gene in the leukaemia cells. The last one I had showed a tiny amounts of this substance.
Apparently even if its all clear I still have to take the Glivic for how long I don't know.

I have found that writing the date when I start a new box of tablets, on the box, helps me to know if I have taken them. I actually forgot one day, and made sure by checking the date I had written. What I did was take the tablet which was 4 hours later then normal and then the next day took the tablet 3.5 hours later than normal and so on until I got back to the right time. writing the date certainly helps, as I often can't remember if I have taken a tablet or not. Also some forward planning is required as I need to know if there is a chance I won't be at home at lunch time. If so I have a small metal pill pox where I put a tablet into and then into my pocket. Looks much nicer than those plastic ones which tend to be quite big anyway.
My next hospital visit is early September, so will probably write more then.

F.I.S.H but no chips

2012-06-19T23:11:00.000+02:00

Went to the clinic for my F.I.S.H results. This is the test they do on the bone marrow. Its all good. Almost no Philadelphia chromosomes. So I don't have to go back until September now.
Been doing Tai Chi for almost a month now. I think this is definitely a good thing. I can't believe its taken me so long to find a class.
Well the summer is finally here. Its about 30ºC during the day and about 25ºC during the night and its due to get hotter.

Blood test again

2012-05-18T10:48:00.001+02:00

Doctor is really pleased with the results. And said normally he would expect to see similar results after a year not after seven months. Which is good news.

Bone Marrow Sample day.

2012-05-15T00:08:00.000+02:00

Bone marrow sample day tomorrow, not looking forward to it.
Lets hope it goes ok.

Its been awhile

2012-05-08T10:29:00.001+02:00

Got my blood test results today. Basically identical to the last one. So next week is the bone marrow test.
Been fighting off a cold for the last month or so. I seem to take longer to get better with colds and when I cut myself. A side effect of the treatment I guess.

Ohh look an update blink and you might miss it.

2012-04-10T21:03:00.001+02:00

Have had a few iffy days well more like weeks. Also recently had a couple of panic or anxiety attacks. Which is a bit strange. But hopefully they will not get worse.
I seem to have a perpetual cold at the moment and sneezed at did my back in a while back. Just got a case of the sniffles at the moment.
In about 10 days I go for another blood test then in about a month I have the bone marrow sample taken.
That's about it for now.

Clinic visit.

2012-03-06T22:01:00.000+01:00

Just come back from the doctors. He is really happy with my test results, and I didn't have to have the dreaded bone marrow test. But I will be having it on the 15th May. So good news the treatment seems to be working well.

Clinic again, and good news

2012-03-06T20:53:00.009+01:00

I went to the clinic and the doctor is really happy with my progress. So much so that he didn't want to do the dreaded bone marrow sample. But I will be having the bone marrow sample taken next time, which is May 15th or so.
Good news that he is happy with my progress.Mind you I have been having a few crappy days, and do find I need to eat on a more regular basis. Also I need to eat breakfast. Never used to but find it helps. Probably need the energy levels.
I am still trying to take a small nap in the afternoon, but sometimes its ends up being a sleep of a couple of hours.
So will be off to have another major blood test in April, this is the one that looks for the Philadelphia chromosome. Then the dreaded bone marrow sample.

Searching for Philadelphia

2012-02-09T23:18:00.001+01:00

No not the cheese or the place. Its the name given to a certain type of chromosome (chromosomes have names?). The name relates to chromosome pair 9,22. With CML the tails of chromosome 9 and 22 are swapped.
So I went to the pharmacy to get the test to search for this mixed up pair. It takes 17 days to do. So by 5th March I will know if I still have Phili wandering around my blood. On the 6th March I have the bone marrow version of the test. So will know if I still have CML.

Check up at last

2012-01-27T12:45:00.007+01:00

Went to see the specialist Thursday 26th. Everything is OK and I seem to be doing well. I've got the expensive blood test to do before next check up at the beginning of March. Then its the bone marrow sample and test, yippee, I am really looking forward to that one not.
I am currently reading on my tablet via the Kindle app, The art of money getting or the Golden rules for making money. (its a free kindle book) Its written by P.T Barnum, yep the same Barnum as the circus. Considering it was written in the 1850's ish its still relevant to today. Just replace things like horse and cart with sport cars etc and add a few zeros to the amounts and it all makes sense.

Checkup cancelled

2012-01-24T12:31:00.001+01:00

My visit to the specialist was cancelled last week, so it been changed to this week. So off to Alicante Thursday.

YABT or Yet Another Blood Test

2012-01-13T10:19:00.001+01:00

Just had another blood test. I have also started to gain some weight. Which is causing a few problems with my back (I have a herniated disc), its amazing that just a weight gain of 2 kilos can give me problems with my back. Hopefully I can loose the 2kg.

Ultrasound check to day

2012-01-12T00:40:00.000+01:00

Went for my ultrasound check today. Had to wait almost an hour before it was my turn.
Had my tummy smothered in gel then saw rather fuzzy pictures of my insides. He was able to make out my kidneys spleen etc, all I could see was fuzzy, less fuzzy oh and look fuzzy white and grey bits.
I felt like saying is it a boy or a girl.
Anyway prelim findings look good will get the proper results next Monday.
Friday its blood test day.