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New to CML

Hi,

I am newly diagnosed for cml infact last Wednesday and started taking imatinib 400mg since sunday.

I am still yet to digest that I have leukemia . I am 34 year old mother of 2 girls. My younger one is a premie born in Jan 2018. Right now i have taken a career break to take care of baby.Diagnosed for CML during my postpartum doctors appointment.Actaully i had asked my doctor for blood test to check my throid and wbc levels since both were a little high during pregnancy.

I tried reading more about cml but it is overwhelming for me. So for now can some help me to get some quick answers.

1. Will i be able have a normal life - take care of kids (2 month old premie and  7 year old) and a husband who works full time.

2.Will i live to see my kids growup?

3. What are normal side effects i should look out for? I already got a rash but my doctor said it is too early to have a sideeffect.

4. Are there any dietary restrictions other than grape fruit.

5. Secrets on how to get back the positive spirit in life.

6. Any advice to make life with cml better.

Hi NJ,

i too have recently been diagnosed with CML. 29 March to be exact. 

I’m a 30 year old male, serving in the uk armed forces, who is recently married. I have no children unlike you. 

Whilst the words are pretty daunting to hear, Leukaemia and all that jazz, what I’ve been told by my doctors have been is that as a normally fit and healthy individual, this condition shouldn’t really affect my life all too much. 

Whilst I can’t give you any answers, I have a very positive attitude towards it all. I’ve been told that most people have a near to normal life expectancy, which is obviously great to hear. Also I’ve been told that I should be able to go back to doing everything I usually do once I’m on the road to recovery. The doctors have even told me that I should be back to playing football again in a few months!! 

i haven’t had any side effects yet other than an unusually large spleen which does sometimes cause me a fair deal of pain. 

And I don’t know about you but I don’t particularly like grapefruit anyway so that shouldn’t be too much of a burden.

I hope this helps you in someway. And feel free to get in touch if you just want to have a chat or anything 😊

 

Take care.

Hi there, 

Welcome to out little club. None of us really wanted to be here, but that’s life!

So ... 

1. Yes. Most patients respond really, really well to CML medication (TKIs) and go on to have an excellent quality of life. A few people don’t, but that’s not something you should worry about right now as the odds are very much in your favour.

2. The life expectancy of someone who responds well to their medication is basically the same as an otherwise healthy person. You will die with CML, rather than from CML.

3. Side effects are very varying, to be honest. Rash is common, so is some muscle stifness. Some side effects are very much related to the particular TKI you will be on. Imatinib (which you are on) tends to have fewer side effects that some of the newer TKIs and crucially fewer “high grade” side effects.

4. Obviously stick clear of the grapefruit, but other than that it’s very hard to eat the quantities of things that could cause problems. Pomegranates are in theory bad, but you’d have to eat so much of them that it isn’t a practical problem, for example.

5. That one takes a bit of time! CML is a bit of a mind bender at first, but once you understand it better things get easier in my experience. There’ll be days when you feel shit, and don’t beat yourself up about that. But you will get better. You’ll still be able to do everything you used to do. Life will go on, and life will go on well.

Reacting to CML diagnosis can be a big stress. I know it was for me. Here’s a little video about a patient, and how they found their diagnosis. This patient is actually me (really!), except the voice is someone else - I don’t really have an English accent 😊.

https://www.cmlsupport.org.uk/videos/what-if-what-now-living-cml

6. Take your meds every day, at the same time every day. That’s the best way to get your CML under control and therefore to make life with CML better. Also learn as much as you can, at your own pace, about CML because when you understand it you feel more empowered. You’ll find lots of really useful stuff including videos on this site to help you learn.

 

All the best,

David. 

The info in ththe video is pretty useful there. Thanks for that. The pictures are a bit cheesy though 😂

That large spleen will go down in no time at all. In the next week or two even, perhaps. Mine was very large too, and I was amazed at how quick it went and how much more comfortable I felt in the abdominal area.

For me and I think many others an important part of staying positive after diagnosis is to get to a point where you understand enough to manage your uncertainty and anxiety. There is a huge amount of info on this site under the About CML and Patient Info headings above. Take on as much of this as is useful at your own pace. Make sure you understand the information the specialists are telling you - use the checklists from the site. If something is bugging you use the forum to get what you need to know quickly. The folk on here have been in the same place you are now, and by helping we are paying back for the help we got when we were diagnosed - and we are learning as well.

The difficulty for the CML patient is the answer we want, the medical community
can’t give us. We want to know why we have this and can it be cured?
The doctor doesn’t know.
So we take our medicine and start a journey. We are pioneers.
The medical community knows that for most people the TKI will diminish
and hold the leukemia at safe levels. What they don’t know is how a particular person
will react to this complicated and powerful drug.

The standard procedure is to treat adverse body reactions as a separate medical condition.
...You have to take the pills and they will treat the side affects.

Some people have little side affects some people have life changing side affects.
The medical community is learning along with the patient.
The patient is educating the medical community. We are their research.
We are going forward in a great discovery on treating CML .
Welcome to the journey.


Romo

Welcome to the forum.  My husband was diagnosed last September.  He is 46 and we have two kids 10 and 11.  It will take time to digest, give yourself the time.  Stay positive because like David said, nearly all respond and things get better, you don't need to worry past that.  I look back over the past 6 months and am amazed on how much we know now and understand and have accepted.  If you can,  bring someone to your visits and get them to take notes.  My husband would ask questions but not be able to retain what was said, he was a bit brain foggy the first few months.   Write down everything that comes to mind and bring them with you.  Many of our questions got answered either by this forum or reading about stuff ourselves.

We are finding out, for ourselves, our 'new' normal.  Every single person responds differently and has different side effects.  My husband Tim is also on Imatinib 400mg and besides some nausea and extreme tiredness, has had no other symptoms.  He has other complications from a bone marrow gone wrong but that is very rare and highly unusual.  Our family doctor has been great for dealing with the side effects.  My husband is self employed and runs an IT business so thankfully he can do that from bed most days.  You might struggle with energy with such a wee one without the CML!  Can you get help when you need to rest?  Life expectancy as far as I can tell is excellent.  At this point you do not need to dwell on the very few that don't.  We chose to stay positive and look at all the success.  There are ones in this forum 15+ years into this and that is such hope for us newbies!  These drugs are really an amazing 'cure' and though you might have some residual side effects even years down the line, there should be no reason you can't lead a normal, happy life.

Music means a lot to my husband and I, so we usually have that playing all of the time.  Distraction is good or your thoughts tend to get you to a place you shouldn't be, especially when you are tired.  I found someone to help with my kids, even though they are older.  I found someone to help cook so I can give more energy to my husband just for now.  If you have friends and family near by, let them help.  I found out that I loved giving but found it rather hard to ask for help.  Our neighbours and friends have been amazing and has given them the opportunity to help us.  Your positivity will come back.  It took us time to digest.  We went in with a sore tooth and came out with cancer.  But, 6 months in, Tim is responding well.  We have finally stopped over worrying about test results and really trust our clinical specialist nurse.  He has been right every time.  You will get through this time.  Stay in touch, keep positve, ask quesitons.....that is what we have done and 6 months on it is so much easier.

All the best.     Tim and Michelle

Welcome to this community. I hope you will find it a valuable resource for information and support.

My husband was diagnosed last Sept. The first couple of months were rough at times dealing with the shock of diagnosis, the fatigue and the stress of starting taking aTKI and then waiting to see if it would work. Where you are now I expect.  But after a couple of months as his blood counts got closer to normal he has felt so much better and actually he feels better than he did in the year before diagnosis when he obviously had CML.

I hope that as others have said you have and will accept help. There are nights after a busy day when my husband will go to bed very early . He just needs peace and quiet and rest. Easier for us because our kids are teens and because I am the one at home making dinner.  But he works full time, does lots of diy around the home and yard,  goes camping and mountain biking. Lots of very good days as you will have with your family. 

Its and hard to get your head around all the info at first and confusing trying to understand test results etc but know that you can come here with any questions and people will be really happy to help you understand and offer reassurance. 

Finally I think it does help if you can keep yourself hydrated and eat a healthy diet . 

Take care, Louise