CML continued...

Symptoms continued

I have talked about the symptoms in the chronic phase of the disease, there are 3 phases of chronic myeloid leukaemia which if left untreated you will die! The accelerated phase is the next stage of the disease and there are no more side effects than the chronic stage. The final stage of the disease is called the 'blast phase' and the side effects are likely to be worst and more noticable that the disease is progessing now. Symptoms include:

• Lots of infections close together
• Anaemia
• Unusual bleeding such as nose bleeds and heavy periods in women
• swollen lymph nodes
• itching (any part of the body)

9 out of 10 patients are diagnosed in the 'chronic' stage

How it is diagnosed?

CML is usually diagnosed after a blood test comes back as abnormal and you are then referred to a haemotologist who specialises in blood problems. The blood test will show a high number of immature white cells prompting the haemotologist to ask to see you asap.

You will give a full medical history and then have a physical examination when you attend your appointment. I was diagnosed over the telephone so i was not seen until the next day, most people are already at the hospital when they are told though. You then have another blood test done to show how many leukaemia cells are present and your doctor will then want to do a bone marrow sample to confirm the diagnosis so that treatment can be planned.

Bone marrow biopsy

I am hoping to film my bone marrow biopsy on the 4th of October as long the nurses allow it and i can have it done with sedation if i like. If i am allowed to film it then i may choose not to be sedated as i will have a reason to be  brave if i am having it filmed. I had a bone marrow sample taken 2 days after i was diagnosed and i have gotta be honest and say 'yeah it did hurt a bit' but that was when the local anaesthetic was injected in to my hip bone, it doesn't hurt after that just feels very strange. However, if you are wanting to go on the bone marrow register you will not have this procedure done, you will just give blood to determine whether you would be suitable to go on the register (enough blood cells in your blood etc) and you need to be under 40 to go on the register aswell but i will double check this. Right the doctor will take a sample of bone marrow and look at under a microscope to work out which treatment to give you and which stage of the disease you are in, this can take about a week.

I think it was about 4 weeks before i was put on a drug called glivec which is first line treatment for people in the chronic phase and the aim of this treatment is to control the condition for several years and to give you a good quality of life.

Glivec is a tablet which you take daily for rest of your life if you respond to it. Glivec works by blocking signals within the leukaemia cells that make them abnormal. Blocking signals kills the cells.

Side effects:

• nausea
• vomiting
• swelling of face
• diarrhoea
• leg cramps
• itchy rash
• loss of appetite

I hated taking this drug as it made throw up everytime i took it and it felt like i had drank bleach as the taste after was awful. I had horrific cramps aswell as i remeber having to crawl in to uni i think if i'd have had access to a wheelchair i would of used one.

Interferon alpha

This is a protein normally produced by the body during viral infections (flu). It is another treatment available during the 'chronic' stage. I think that it was a first choice of treatment before glivec. Interferon is given by a small injection under the skin. I was on this treatement for a few months this year and it is hard getting used to injecting yourself, i think it is bad enough someone else doing it but when it's your self i think it is even harder. I did not get on with this drug either as i spent most of my time in bed as i felt like i constantly had the flu.

Side effects:

• chills
• fever
• headaches
• back ache
• tiredness

I had all of these it was not pleasant at all i have to say.It says in the booklets that these side effects wear off after the first few injections, i think this is bullshit as i had a temp everyweek and all the side effects above the whole time i was on it. Oh and if your not already depressed you are likely to be whilst on this drug, i don't think there are any plus points to taking it except it might reduce your white count. Guess what this didn't lower mine at all as i am an awkward patient lol.

Chemotherapy tablets

Hydroxycarbamide is the most common tablet used and this is the only treatment that has got my blood counts normal but it doesn't do anything for the actual cancer which is a shame because it is brilliant for reducing white blood cells very quickly, and the only side effect i have had from it is putting on nearly 3 stone but i hope to lose it all again once i have the transplant.

Dasatanib and Nilotinib

These are the alternatives available if you do not respond to glivec. I have being on both of these drugs and had no joy as it turned out i had the rare bone marrow mutation which means you will not respond to all 3 'wonder drugs' as they are sometimes called. I found that the dasatanib caused a horrific rash and swelling so i lasted probably a month on it and the nilotinib i didn't really have any side effects on. Dasatanib is again a tablet and you take it twice a day and it blocks out the dodgy cells like glivec does, they do not know how long this drug will have an efffect for as it hasn't been out long enough to know, but it should have a long lasting effect like glivec.
side effects of dasatanib:

• diarrhoea
• tierdness
• fluid on the lungs (so they usually do chest x-rays whilst on the drug)
• headaches
• rashes
• swelling
• bone pain
• fertility may be affected but not sure how long for

Nilotinib is again tablet form and again blocks out cells. It is important to take it 2  hours before you eat or an hour after you have eaten, so when you get up on a morning and then before you go to bed is what i found best but everyone has their own way.
The side effects:

• nausea
• diarrhoea
• skin changes
• constipation
• tiredness

I don't remeber having any of these, i just found it awkward getting used to taking it on an empty stomach as the other 2 drugs i had to take on a full stomach to prevent nausea.


A few statistics

Glivec- 9 out of 10 people will live 7 years and some scientists have estimated that most people will live for at least 19 years on glivec.
These are just rough facts they may be proved wrong and average survival time is different for every patient as every individual is unique.

Most people who have high dose therapy for a bone marrow transplant will live for 15 years, if that is true i may only live til im 35(i hope this wont be the case before you think i am being morbid but i do have to prepare myself for the worst and that means i could die during or after the transplant i have to deal with that cos if i didn't then i would be very naive).

I think the hardest thing for me at the moment is that i keep having dreams about my own funeral, mind you last night i dreamt Liz Mcdonald off corrie was my mother so i don't which is scarier lol. I am going to have to plan my funeral cos i aint having my family picking my songs and singing a load of hyms i have probably never heard of lol. I know that i would have Joy Division-atmosphere as a definate song and then possibly The Smiths (i sound really depressing now) i did have another song i had picked and it has slipped my mind completely. I wont mention owt else to do with this right now cos it will be hard for my family to read but i am sure they will understand why i have mentioned it as every 30 out of 100 people who have the transplant will die and that is a lot of people (not numbers) to me.