Day one of the rest of my life

Hi Mark,

It is very tough when you are first diagnosed but this forum is a really good source of information and re assurance;the first six months are difficult because as your imatinib takes effect you might get conditions like bone pain or eye bleeds and side effects like eye tissue swelling but this is just the drug clearing out the leukemic cells in the bone marrow.It is also worth noting that there are difficult psychological issues that might develop about why me, and can I carry on working or engage in family life.

The positives are that if it was before 2002 it would have been a fatal condition so we now have these amazing drugs like imatinib and four others down the line and hopefully you will have a normal life span.One oncologist said if you are going to get a cancer get CML because we have the drugs to treat it.

The drug Glivec/imatinib was cited by Time Magazine as the magic bullet for cancer,others said that it was the golden drug.You might not expect total understanding of your situation  from medical professionals unaware of the benefits of imatinib and the other tyrosine kinase inhibitors and treat you as if you have leukemia and so on the road to expiry..

Some of the members of this forum have been remission free for up to 20 years and for me about 13 plus.

I wish you well,

John

Hi John

many thanks for the response to my post and pearls of wisdom. I’m sure I will be a regular on here as I navigate the road to getting better. 

Much appreciated. 

Mark

Hi Mark,

You might find this video useful.

https://cmlsupport.org.uk/videos/2018-uk-patient-day-side-effects-and-ho...

There's loads of useful videos under the "Patient Info" -> "Videos" section of the site.

Here's another good video and presentation about side effects:

https://www.cmladvocates.net/download/cml-horizons-conferences/cml-horiz...

https://vimeo.com/272169995

David.

Hello Mark. I am just one year into CML and imatinib. 

During the first few days of my taking imatinib, I did feel slightly sick and needed to sit down for half an hour. This passed very quickly. I experimented with the timing of my taking imatinib and decided upon 4 PM. If you should encounter any gastric side-effects, then it is may be better to deal with these after work and before bedtime.

At age 63, I am still working three days plus per week and I have not lost one day in the past 12 months. I have also continued to swim for one hour three days per week.

I have suffered, by way of a side effect, an increase in bowel frequency which is also associated with urgency. This became far worse when I took the Accord generic version of imatinib. I also suffer from cramp periodically in my legs and feet.

I remain unsure whether I am meeting the required targets with imatinib (awaiting delayed results consultation) but I know that there are other TKIs available.

I try to remember that other medical difficulties do not all tie back to CML and TKIs. As my GP says, "you are allowed normal things occasionally".

Hi mark, I was diagnosed nearly 5 years ago and can’t believe how good things seem to be, obviously at the start shock, worry, and probably feeling sorry for myself but the good days far outweigh the bad days, you’re in great hands medically, and the best advice I can give live your life as you did prior to diagnosis.