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Getting to grips with this...

Diagnosed with CML in October 2006. Now on 400mg Glivec daily and feeling OK apart from the usual sporadic side-effects which aren't too troublesome. My next blood test is three weeks hence, ten weeks since last hospital visit. Bone marrow test scheduled for May, to see if Glivec is working.

And this is all I know. When I go into see the doc, he asks how I am, and I say 'OK, thanks'. He tells me that the results look OK too, then off I go till the next time.

Frankly, this suited me perfectly well until, having read all you vastly well-informed Forum contributors, I have begun to feel ambiguous about not being more knowledgeable.

Meanwhile,I look vaguely normal, and probably like other 'Autumn 2006' CML people, feel in a strange no man's land somewhere between a very scary recent diagnosis and a lifeline thrown by constantly developing cutting-edge drug therapy.

The way I have handled CML so far is by acknowledging it, accepting it, keeping my head down, getting on with it and hoping for the best. But now I wonder whether I should join in with everyone else and equip myself with detailed knowledge of my results. Is there any real advantage? Or is there a danger that it becomes a preoccupation? Does it really give us more control over our CML, or paradoxically does it mean we become more subjugated by it because we think about it more? I've got CML as a disease, but I don't want it as a hobby.

What I'm really trying to decide is whether, at my next appointment, I ask for the whole caboodle of blood and bone marrow details, or just amble in as usual and say (hopefully!) 'I'm OK, thanks'!

Diane,

Hi, greetings from another unwilling member of the class of autumn 2006! I know how you feel. At this stage, things seem to be going well, but how well and how much should you have to worry about it is quite a dilemma. As you say, you feel the same regardless of any readings. It's not like a headache or cold where you can feel if medicine is working.

Personally, I do not think that there should be any need for you to arm yourself with detailed knowledge. The doctors should be looking out for you and if you are happy as things are, then no need to delve any deeper. The only question I would ask is whether you are getting the results from someone who is fully familiar with and/or specialising in CML and glivec.

If you do feel like learning more, you should not have to equip yourself with oodles of details. There should be a percentage figure from the tests that is the key indication of progress. If you want to, you can ask for just that and share it with this of any other of the CML groups to get a further opinion. (If you want to limit the audience, groups like the Asian group have a forum only available to members). In general, this should confirm everything is OK, so then you can stop worrying about whether you should be worried.....

Ultimately, the decision has to be yours. (Not very helpful I know). However, as I am as new as you to all this, I suggest you see what others say before deciding!

Bill

five year survivor

I used to get very angry when I read the posts that everyone seemed to be so savvy about results and where they stand with percentages and levels..words I only vaguely remembered from a session with my oncologist.I have a fabulous oncologist who is right on top of CML.I thought he was going to do the latest dance step when he learned I actually had CML. Like he was waiting for me to come along.We waited the time with bated breath to see which Leulemia I had.He kept using the word Gleevec which meant nothing to me.Kept saying pray it's CML...Philly chromozone...What the heck he was talking about I had no clue...TIL the BMB results came back.I feel fortunate I have the doctor I have.SO making a story long....I can't be bothered with remembering all the chemistry so I take my meds and let him worry about it...I'm more worried that he will retire and I have to have a new doctor.

Cheers to everyone!!
Freeda

My thoughts:
As newly diagnosed, with Gleevec as front line treatment, the expectation is that you will do very well....so no, you should not be worrying yourself silly. If you have troublesome side effects to deal with, then you might need to seek some suggestions about that.

You should have normal blood counts by now, or possibly a bit low on reds and whites? I think it is helpful to 'actually know' where you stand on this....and many people do ask for a copy of their bloodwork and keep a notebook. This does not mean it is nightly reading!!
Also, is your doctor doing a blood chemistry and monitoring liver enzymes.....he/she should be, but I would not assume this. Dr. Druker always says "normal is normal'....so if the counts are normal, another thing not to worry about.

The bigger question is are you getting a cytogenetic response (a decrease in ph+ cells).....and maybe you are not going to see any results until a 6 month bmb. With this disease....feeling fine does not mean the drug is working optimally for you, only the test results tell this. So, get these results (cyto, pcr or FISH) and track them.

Most CMLers I know feel that knowledge is power and don't want ONLY the onc to know what is really going on....but this is a personal preference. Personally I think there is less stress when you know what is going on and participate in any decisions (being a pro-active patient). Also, by participating, this is a way to check on your doctor.....why assume that he/she is completely knowledgeable about CML unless they have explained things to you completely and demonstrate a good understanding. The top CML specialists that I am aware of in the USA (like Drs. Druker and Talpaz) do this automatically.

Again, this is all personal choice...you can just leave everything in the hands of your oncologist......or you can be a partner in your treatment. And I don't believe that being pro-active makes dealing with CML more stressful. I think it has more to do with your basic personality....ie whether you are a worrier or not, etc.

Anyway, that's my slant.....having had cml about 8.5 years and also having worked with patients as a physical therapist for 30 years.
Nancy C.
Oregon, USA

Hi Diana,

Everybody has different thoughts on this, so here are mine.

When sitting in with your consultant, he or she are going to be talking about things you have never heard of, let alone even thought about. This is your life and I’d certainly want to know the why and the wherefores as to why I need to take the medication, what it is going to do for me and what I should expect. Remember the Doctor might be speaking on a different level to you assuming you are able to understand there terminology. Depending on his or her manner they may be talking above you. However if you have some knowledge then that can only be a good thing. I know the Dr's at Hammersmith have and do take the time to explain in detail the latest results they have for you and I am sure that this is the same for all Centers of excellence in CML. I am not so sure about local hospitals who may not really have the expertise in CML but do there best.

On DX, I was only the 6th ever patient to have had CML at my local hospital so I was very pleased to have had joint care then sole care with the Hammersmith.

Being armed with information can only help you. Write down any questions you have before your consultation. Ask questions and make notes during the consultation and if available take a copy of the results. This way you can keep track of your own progress yourself. If you still don't understand the answers then ask them here on the site. You will get answers. This site has a huge wealth of experience covering every aspect of CML. And yes even the consultants themselves take a look at it from time to time to see what it is that is being asked.

The last 2.5 years has been a very steep learning curve and am so pleased that I took the time and trouble to research my problem.

I feel that I am in control of my life again after a period of instability and that is only because I bothered with my wife’s help to inform myself.

This site has been a lifesaver and also has expanded our social life. We have met many new friends and become very very good friends with some of them.

Good luck and sadly welcome to the club that no body wants to belong to.

Regards

Steven D.

Hi all,

I can certainly empathise with everyone. Just read my signature and for most people it is all gobbledy gook. I could have simply said that I was fine.

This would be similar to answering the question, how much money do you have to live on? by saying that you don't know or don't care as long as it keeps me in my current life style. Surely most of you would want to know what your bank balance is on a regular basis.

Once you have that number, then you can decide how wealthy you are, and not your bank manager.

The same is true for CML. If you get a statement every month (or every 3 months) that tells you what your counts are, then you can tell how well you are doing with your CML.

A 3 log reduction would be like having a million dollars in the bank. You would be very rich and no longer have to worry about your CML.

A 1 log reduction would be equivalent to reaching CCR. This gets you into the Zero Club and is like having $50,000 in the bank.

For those who reach PCRU or greater than a 5 log reduction ... well ... you have just won the lottery.

Log reduction is just one way to measure how much CML money you have. If you can get your doctor to give you that one number, it should serve you fine. Simply compare it to the previous number and you have it made.

Then there are others who want to know more. What are the current bond yeilds, interest rates, stock market levels, etc? These numbers would be equivalent to WBCs, platelets, neutrofils, etc.

I am the keeper of the Zero Club. Just let me know when you reach CCR and I will assign you a Zero Club number.

Our resident turtle, Nancy C., is still waiting for her number. She is a shining example of someone who can live a full and rich life with less than $50,000 in the bank. We were clinical trial buddies at OHSU back in 2001.

Zavie

Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca

Hi Diana - from yet another reluctant member of the class of autumn 2006!

You have had a few opinions here, so I thought I would join in and give my two pence worth.

I think how much you choose to learn about our disease is up to you, but the main thing is for you to feel at ease with the decisions you make. For me, I need to understand what it is that I have got, and how this wonderful drug is going to affect me. So I have made the conscious decision to learn as much as I can about it all because that helped me to accept it and come to terms with it. I have tried to learn the terminology and to talk numbers reasonably intelligently with my haematologist. But I think it is also important to have faith in my doctor because in the end, however well informed I become, it will be no substitute for his knowledge and experience!! My consultant is an expert in CLL, not CML, but he does seem very knowledgeable and he certainly has me sussed in terms of needing to have everything explained. He is also big on treating the whole person rather than the disease which I have appreciated. But I am not being treated in a centre of excellence for CML, and although things are going fine so far, at the back of my mind is the feeling that if the wheels do start to come off, then I may request a referral to somewhere like Hammersmith.

How much you tell people is also a very personal decision. I chose to tell a very wide audience - I work as a infant teacher and needed to explain my lengthy absence in the Autumn whilst I got myself together again after the News. The disadvantage of that was that I saw the whites of a lot of people's eyes - leukaemia has a very poor public profile and as Joseph has already said, I needed to do a lot of PR work on recent advances in treatment.

How do I feel now - Erin from Glamour magazine calls it 'my so-called normal life' in her blog and that covers it nicely. A few months ago I had a seriously scary diagnosis and I have a Nastie in residence in my body for the rest of my days. But that is no excuse for not Living my life to the full, and if anything this diagnosis has given me a kick up the backside to make the most of life a bit more. not to take so much for granted. you know what i mean i'm sure.

well, I've rambled on rather more than I meant to and ranged over quite a few things....hope it helps.

take care, Janet

Diana G
Well, now. An abundance of food for thought!! I wonder if any research has ever been done to show that the likeliest 'victims'of CML are extremely bright, articulate and jolly nice!

Thank you all very much for your observations and pertinent comments. I shall take my time to read them properly and consider them with care before making my trip to Stafford Hospital on April 24. My haematologist is a very cool guy who wears green Kickers...is this a good sign?! He is also the approachable sort, so I shall ensure our dialogue is a bit lengthier than usual. I'm still ambivalent about how much I want to know - think I'll go a bit steady but I suppose it depends on whether what he tells me is sort of good or sort of bad.If it's sort of bad, I'll probably want to know more.If it's sort of good, I'll be out of there like a rocket and round to the pub for a Unit or three.

I was interested to note that one of you remarked on the dilemma about how much to tell people - and exactly WHO to tell- about the fact that one has CML. My two close pals have stopped being extra nice to me because I seem 'vaguely normal' and other friends all seem rather surprised that nothing dramatic seems to be happening. Meanwhile, I pick the long hairs off my black coat ( checking for hair loss has become an obsession) and count myself lucky that I haven't noticeably begun to fray at the edges!!

And long may it continue for us all!

Kind regards and thanks for helpful advice,

Diana