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Advice after recent diagnoses.

Hi everyone.

I was recently diagnosed with Cml 2 month back. I came across this forum/site and thought I would introduce myself and seek a bit advice from fellow sufferers.

I am 33 year old, my wife is 5 month pregnant with our 1st child after 3 year of trying, and have since found out that I my employment is to end in September after 2 year of temporary contracts. Everything has come at once and now we have questions eating away quite regularly leading to my wife getting upset on occasions. I think the dust is starting to settle if that makes sense. I am remaining positive however.

I am on 400mg of Imatinib and have just come off allopurinol and now on 7 days of antibiotics for an infection. My consultant has said he is happy with my progress as my counts have dropped quite dramatically and quickly leading to him telling us this was "excellent" . That's good and I hope this continues for a long time, hope!

I was told stories of people being on Imatinib for 12+ years since these drugs have came to fruition. Is this the case for a lot of sufferers? Are the prospects good? I've also heard people say they can live a near normal full life? I have the usual cramps, fatigue etc but it's all bearable as I'm here!

I also is there a higher risk of the cancer spreading?

I hope this isn't too long winded, I just wanted to speak to other sufferers. As you have all been there, it can at times be a bit of a lonely place when you have so many questions.

Thanks and take care all!

John

Hi, John

No doubt Sandy, our main expert, will reply, but welcome to the group.

I was diagnosed 18 months ago, and we all understand yours and your family's feelings.

All I can tell you is that 18 months on I, like most people diagnosed on here, am mainly back to a near-normal life. Most drug-related side-effects seem to dissipate after about 6 months, and for me that means normal work, socialising, scuba diving, snowboarding, flying and everything I did before but with perhaps a little better focus on enjoying each day. A few things in life are more difficult (like getting insurance!), but I can still do what I want with very little regard for CML.

My own research has shown me that one has to take the risk of a CML-related adverse outcome into context with everyone's risk of an adverse outcome from anything from a road accident to any disease out there. We all live every day with a risk that something will happen to us, and while there is an extra risk from CML, it's quite small. As a normal-weight, non-smoking and non-excessive drinking male, I believe the CML risk is lower than the health risk observed in most smokers or overweight/obese people - they should be far more worried about their smoking/weight/drinking than I should be about CML!

I hope things continue to go well for you - the latest research is that the first indicator for optimal response is a reduction in BCR-ABL transcripts to under 10% of the DX level within 3 months of starting Imatinib.

Rod

Hello John and welcome.

It sounds like you have really been through it recently but hopefully things will get better for you and in about four months you will certainly have other things on your mind - you won't know if the fatigue is related to the drugs or just sleepless nights from the new arrival!

The aches and pains on Imatinib will settle after a while and the best way to look at this phase is that it means the drugs are doing their job. Hopefully you have a good doctor that you trust but you may also wish to visit a centre of excellence in addition to your local hospital. You may also find going to a patients meeting regionally would help as you can meet people face to face. At the top of the page there are details of the next meeting at Hammersmith if you can make it.

Lots of people have been on these drugs for quite a number of years and, if you are on Glivec, there are a few others out there to try if for any reason you do not get on with it.

Keep us updated

K

Mate,

Exactly what Rod and Karen said. Firstly, chances are you will be fine. I'm a similar age to you, so please check out this video about CML i did a couple of years ago:

http://www.patientpower.info/video/love-and-medicine-conquer-cml

you've started on a drug which is absolutely fine and has been providing sterling results for 12-13 years now. The good news is there are several other treatment options now coming on line, so if Gleevec doesn't work for you there are several paths to try.

I know first hand what it was like for your wife - my wife had a similar journey, although she was not pregnant at the time. It is often harder for those who are the passenger than the driver. You will undoubtedly have both wondered how long you might have; count on many many years. There is so much research going into CML advances are being made all the time. All things being equal there is no reason you should not have a normal life span with a good quality of life.

You will feel more and more confident about dealing with CML as every day passes. You will have some ups and downs on this journey but focus on the long game. The initial side effects will pass and you'll get used to your new normal.

please feel free to ask any Qs any time and good luck with your journey and impending arrival.

Chris

Morning.

Thanks Chris, Karen and Rod for these positive words!

It seems that you all are still remaining very active. I used to be very active, and a keen cyclist, hoping to get back on it soon!

Thanks for the link Chris, very inspiring.

As for BCR-ABL levels, I am due to see consultant on Monday so will ask, as so far I have only been given my wc, rc and platelet count, I don't know what to look for with regard to percentage of BCR-ABL, but shall ask, hopefully he shall tell me. He just said 3 stages of remission over 3 month, 12 month and then molecular by 18 month, were his aim. I haven't had bone marrow biopsy just bloods, hence my concern over spreading and accurate diagnoses etc.

Once again massive thanks for responses.

John

Hi John

I just wanted to say hello and to say how sorry to hear that you were dx with CML at this difficult time for you.

As everyone else has said keep reading the board and asking questions. No question is too trivial, we have all got lots of experience with all the issues with CML and glivec.

I don't believe that there is any real risk of the cancer spreading to other organs/tissues. Glivec is very very effective, you just have to keep taking it day after day - a long way down the line there is some chance of possibly stopping the drug - but this depends on lots of things so don't even think about this at the moment.

Don't try and read too much about all the issues and problems, read what you need to know at the moment and you will know when you need to expand your knowledge. Keep records of your results and lists of your questions. I hope you have a nice doctor, to me that is the most important thing.

Look after yourself

Susan

Hello John, and welcome to the group nobody wants to have to join !! Best advice is to take it as gently as possible learning as you go. This is a wonderful place to gain info, and 'meet' others online. Where are you being treated? There are CML patient groups at some of the specialist hospitals around the UK and you could link up with other CMLers if you want to.

All the best to you and your wife, as others have said sometimes its worse for the partners and family, they have to look on while we and the doctors do the 'doing'.

Pennie

Hi Susan

Many thanks for your kind comments and advice. The site and forum will be a great resource for helping me become more comfortable with the detail and issues surrounding the Cml as time goes by.

So many questions, but suppose that's all part of the process.

Thanks to everyone for making me feel a little better about things!

John

Hi Jon -

All I can do is echo what everyone else has said. CML doesn't "spread" (metastasise) like many other cancers, so it's a somewhat different cancer than you might have read about before. Your blood is everywhere in your body really, so it's already all-over -- it's not like a liver tumour that is only in your liver and might spread elsewhere. This is generally a good thing because there's a single point of "attack" that the drugs can take. You don't need to worry about secondary cancers, really. You'll learn lots about all of this in time ... it's all quite overwhelming at first.

I was your age when diagnosed, and have gone through one more birthday - so I am 34 now. No kids, yet. The first few months were hard, but it's starting to get better on all fronts now. We are a world away from what this could be 15 years ago.

Where do you live? I am in London - so if you're there and you'd like to meet up I'd be more than happy to share my experiences and (limited!) knowledge with you.

To me, knowledge is power - so learn what you can and try to understand things as best you can because then you feel so much more in control.

David.

Hi Pennie

Thanks so much for getting in touch. You have all been great!

I am being treat in the Newcastle/Northumberland area at present, I have just come back from appointment with my consultant today, who said my blood is in remission after just 2 month. He said he was delighted and gave me the figures, so that seems good.

As for picking up info on this site, I would completely agree as I have learnt more over the past weekend than since my original diagnoses 2 month ago.

Take care!!

John

Hi David

Thanks for getting in touch.

My consultant echoed your views on the mutation or spread of Cancer. I feel a lot better about this topic now.

As for meeting up, that would of been great, however I live up in Newcastle unfortunately, not unfortunately I live in Newcastle, but unfortunately I live miles away ;-)

I agree about our prospects 15 year ago, and for this I feel very positive and grateful in a sense!

Take care.

John

Hi John,
I cannot really add very much to the excellent advice you have already been given, and would only add that you should not allow yourself to worry about this cancer 'spreading'.

CML is, if you like, a liquid rather than a solid tumour and as David said- it does not metastasize like solid tumours. Rather- if left untreated- it goes through 3 stages. The first is chronic phase and is the most indolent of the three. This is the phase that most people are diagnosed in and the phase that is most successfully treated with TKI therapies. I am assuming you are in chronic phase.

CML develops when a kind of white blood cell at a very early stage of cell development (possibly a stem cell) for some reason sustains damage which results in changes in 2 (namely numbers 9 and 22) of the 23 pairs of chromosomes that we all have.

#9 and #22 swop parts, each one with the other. Chromosome 9 contains the ABL gene which transfers and fuses to the BCR (break point cluster) region on chromosome 22.
The resulting fusion of BCR and ABL forms a new abnormal gene on chromosome #22 which is then known as the Ph chromosome.

Whatever it is that 'triggers' such an event we can only guess at (it is not inherited and is not passed on to your children).
Nevertheless, a lot is known about Ph+CML and how it behaves because it has been studied extensively since the 1960's.
It is a fairly uncomplicated cancer as it only has this one molecular abnormality (the fused gene- BCR/ABL1), rather than a complex of events and abnormalities that are the cause other leukaemias and cancers.

Your doctor has already outlined the goals and timelines that you/he should concentrate on. For the moment you just need to know that the prospect for you living your normal lifespan is excellent.

Glivec (imatinib) by now has a long track record and has been an unprecedented success in the world of cancer therapy- in fact it turned the whole cancer research world on its head because its use has proved that when you target and inhibit the abnormal cell signal- in this case produced by the PH+ cells - you can stop the processes that causes these cells to reproduce in an uncontrolled way. In other words TKI drugs turn the on switch to off.

They do this by blocking a protein (confusingly also called Bcr/Abl) produced by the BCR/ABL1 gene (as contained on the PH chromosome) - the signal that instructs the cell to divide is 'switched off'.

Hence the Ph+ cells die and their population is reduced, eventually to very low levels, over time on TKI therapy. Normal cells are no longer impeded and return to their normal levels as needed for a healthy immune system to function.

Glivec and the other 2nd/3rd generation TKIs(tyrosine kinase inhibitors) such as dasatinib, nilotinib, bosutinib (and the newer ponatinib) are extremely successful at controlling this disease for the majority- in fact because of these drugs the number of people now living 'normal' lives is growing year on year.

Take some time and do watch the video's on this site- (including the excellent patient testimony ones like Chris's). There is a lot of information out there- but try to take it slowly and do ask on this forum if you need any help.

Your wife will worry of course, but if you can learn together it will help you both take the strain and life will improve.

Fear is the big elephant in the room... but as someone else has already said, knowledge is power and I fully agree with Andrew Schorr of Patient Power (who make a lot of the excellent videos that we feature on our video page) "sometimes knowledge is the best medicine".

Best wishes to you,

Sandy

Hi Sandy

Many thanks for getting in touch.

Wow, all this information is very useful. I am just starting to get a better understanding of things. I still have a long way to go however. I think the more of an understanding I get, the more empowered I will feel.

My consultant has said that I am in first phase of remission with my counts doing well, however he is concerned about the side effects of Imatinib and mentioned the possibility of maybe making the transition to Nillotinib if some of my niggles persist (chest pain and tightness, knee pain, cramps and fatigue) although I am reluctant to jump ship too soon, if that makes sense. Especially with Glivec doing so well with the CML, and there not being an infinite amount of variant targeted therapies to choose from.

Again, many thanks for taking the time make me better informed.

Take care!

John.

I suspect those three timelines are:

- 3 months, haematological remission. This would mean if someone did a blood count and biochemistry test on you, there would be nothing particularly out of the ordinary to see just from the blood result if someone didn't know you had CML
- 12 months, complete cytogenetic remission. This would mean that out of a sample of, say, 200 cells taken from your bone marrow, none of them showed evidence of the Philidelphia chromosome
- 18 months, major molecular response / MR3. As the engineers and scientists have got more advanced, they are able to look deeper than the cytogenetic remission, and detect really tiny (1 in 100,000 or more!) traces of the BRC/Abl protein in your blood. Major molecular response, also called MR3 (molecular response, level 3) is the point where studies have shown the disease to be well managed at.

You'll hear about "PCR" numbers, and these are the measure of molecular response. On the international scale, which I think all UK hospitals use, 0.1% is MR3. Exactly where you are right now will depend on where you started. The numbers can change quite rapidly. For example, I started off at 320% (I think that was quite high) but 8 months later I am down to just under 1%. It wasn't a steady decline ... there were big drops one month, and not so big the next. We're all different.

Hi David

Thanks for getting back.

It's all hopefully going to become more familiar as time goes by, I need to read more! I think for me is I don't want to be misunderstanding something that makes me ignorant to my hopeful recovery!

You've been a big help, that's great that your down to just under 1% in just under 8 month from 320%.

Take care of yourself.

If you want to read more, I'd recommend this book. It can get a little technical at times, but not overly so and you don't need to understand the occasional sciency bits to get the overall picture. I learned a lot from it. It's called "The Philadelphia Chromosome", so it's cover to cover about CML.

http://www.amazon.co.uk/The-Philadelphia-Chromosome-Mutant-Genetic/dp/16...

Hi John, I know this is an old post but have just read through it while looking for some info and I can relate. My husband has just been diagnosed at 29 years old and I am 6 months pregnant with our first!

A complete bolt out of the blue, he's a healthy man, picked up on routine blood tests during an annual health assessment. He seems to have taken it all really well went through all the testing and diagnosis in private and only told me when it was all confirmed, which has broken my heart.

I on the other hand am not taking it well so can completely relate to your wife.

He has just started on tasigna, dr says he has caught it early, WBC was at 28.

I am just paranoid after google led me to believe that he has 3-5 years survival, 10 with medication. I am heart broken and worried about our future, although I have read a lot of posts about the info on the Internet being out of date.

He has a catch up with his dr on Friday, so I will be going along with him and hopefully I get feel a bit more assured after this.

I just can't believe this is all happening. Feels like a nightmare

Hope that you are in good health and still doing well

Hi

I will start by saying that I came across your post by chance as I haven't been on the forum for a while as things have been manic (Not CML related, as you will see later in my post ;-)). I was going to post an update to the guys on the forum in September time when I have my latest PCR results. That said, I am really glad I did as I really want you to both to feel a lot better about things, sure all the other guys on here have gone along way to doing that.

First of all how did your husbands appointment go? 

It sounds like you and your partner have had nigh on a carbon copy experience as me and my wife! I also didn't tell my wife for fear of upsetting her whilst carrying our child. My WBC was 102. I would say this, you search online for reassurance and sometimes (Most times) you will end up with out-of-date information from what you would believe as the most reputable sources - that was certainly our experience! Personally, my first bits of advice would be; Use this site as a go to for information, everyone here lives, either with or with someone who deals with CML on a daily basis. There is so much positivity on here. Sandie and others will help you with accurate information and guidance at any point. Then if your consultant is good, trust their data... again they treat people with CML on daily basis.

Some literature out there is simply out dated, I remember me and my wife reading literature handed to me at my first visit that stated the whole 5 year chronic, 18 month accelerated, and 6 month blast and put 2 and 2 together and we both looked at each other and said "7 Year!"... It failed to mention this was without a treatment! 

Since then I was lucky enough to transfer to a centre for excellence near me in Newcastle and get under the care of Prof' O'brien... His first words that he wanted us to remember when we left his office were one sentence  "Your going to be fine!"... My wife was so lifted she burst into tears! Others like Chris on here stated to me its often harder for the partner, a year on from my diagnosis and he was right. I will say this, the last year has brought me and my wife so much closer. We now have a lovely little boy and we appreciate the little things so much more! I have responded "very well" to treatment after some ups and downs, and like your husband am now on Tasigna.

On my last visit to clinic Prof' O'brien said he fully expected me to live a normal lifespan. I believe that is what most people are now told. New TKI therapy has proved so successful, and now there are so many variants too. I know its hard for you guys right now, you have so many questions, but I am hoping you have found reassurance from visiting this forum.

A year on, my job has ended, my wife faces unemployment imminently, I have had a few other health issues and she has had problems with Type 1 Diabetes... my point being this, my life is now filled with other worries that take precedence over the CML - would I of believed that last year in your predicament - no way! Now we tend not to stress about all things like we would of prior to being diagnosed! We appreciate the small things that make life richer.

It may seem hard for you now, but just think in a few months time you will have a beautiful Son or Daughter to hold and spoil at Christmas, that will lift you and most definitely keep you on your toes... I must dash now as my boy Leo won't settle for bed and the World Cup is just about to start on TV... See what I mean about new grumbles ;-)

Take care both of you and if I can assist in anyway be sure to respond!

John.