You are here

Newbie!

Categories:

Hello everyone, I have recently been diagnosed with CML (two weeks ago) so all this is very new and mind boggling. I have had a brief look around the forums and have some idea of what to expect.

The haematologist has put me on hydroxycarbamide, which I have been taking for just over two weeks now. I had the bone marrow biopsy (ouch!) and the confirmed diagnosis of CML last week. I await to hear which TKI I shall be prescribed..

It’s good to find this forum as I really would like to find out what happens to people with CML, how we react to treatment and what the disease does to us...I appreciate everyone is different, but I currently feel occasionally tired, and if I go for a 3 - 4 mile walk I am completely useless for 24 - 36 hours. Does this pass? I wonder if it is a symptom of CML or a side effect of the hydroxycarbamide.

I am 68 now but have been, up to now, a fairly fit and active person. Desperate to get back to exercising properly, but have no idea when, or if I can, do this.

Any tips, advice etc gratefully received.

Thanks.

David

Hello David

Once you start taking the TKI, you should see your blood count numbers quickly return to normality. You may need to wait for three months until you get first cytogenetic results to assess how the TKI has negated the leukaemia. You may receive anti sickness and anti-gout medication to take alongside your TKI during the first couple of weeks.

I experienced a number of side effects from imatinib but remember that everyone is different. I was moved after two years onto dasatinib which has given me quite an easy ride.

I am rising 65 and I swim front crawl for an hour every two days and in between I walk three miles a day. I do not feel tied but I would say that I have lost some strength. All in all, it should be quite manageable and you should be positive moving forward. 

Many thanks for the reply, Nimbus. It’s so useful to hear from other sufferers...

It sounds as though you are living a very healthy life and managing plenty of exercise. Hope for me yet then!

If it’s not too personal a question, why were you switched to dasatinib after two years?

Your reply is very encouraging - thanks for sharing.

Hi David,

I vividly remember when I was first diagnosed with CML over 10 years ago. It changed my life in only one respect - I am healthier.

You will not die from CML. You caught it, likely early while in chronic phase. Treatment for CML is extraordinary in that research has discovered the key active site genetically which triggers the disease and they have drugs which shuts down this site. CML is no longer a death sentence like it once was.

You have a few milestones to reach to know for sure your future prognosis. The key milestone is cytogenetic remission where observed CML cells under the microscope are zero. This will likely occur over a 12 - 18 month period. What is important now is that this cell count, which is probably 100% right now, starts to fall. It is the trend downward you want to watch. Again - this will occur and you will achieve this milestone.

As you begin your treatment, your blood counts will normalize pretty quick (weeks) as mentioned here. I began feeling well within days after starting treatment. Although not a cure - feeling good is good.

Over time you will learn much about CML, drug side effects - and most important, I believe, how to treat yourself in a more healthy way. This is why I tell people CML saved my life. I became much more aware of our biology and nutrition. I had blood tests taken every 3 months which exposed a lot of emerging health issues (metabolic, etc.) I never knew I had. Even though fit and eating what I thought was good nutrition - it wasn't.

Now it is. I reversed all of these metabolic markers including improving my vitamin D levels which helps even avoid Covid.

Let CML be a wake up call to your health overall. Scour this forum and other sites for others experiences and be your own best advocate. No doctor knows how you really feel. Only you do.

 

Hello David

Whilst on hydroxycarbamide at the start, my husband was very anaemic and told to do only a short walk each day as some mild exercise daily helps with the recovery.  We started with about an hour of slow walking a day. Over about 2-3 months, iron levels went back to normal. We gradually increased the level of exercise in consultation with the haematologist and by 4 months he was running weekly 5km park run races in 25-30 minutes. It felt unbelievable at the time. 

 

 

Thank you, Scuba, for your most encouraging reply. It’s so good to hear that after 10 years you are fit and well - gives me hope.

It is most interesting to hear that you have discovered so much about yourself with the frequent blood tests, and learnt a lot more about your biology and nutrition.

Amazing to discover how research has turned CML from the fatal disease that it used to be, into a treatable commodity.

I look forward very much to feeling 100% again, physically. I think mentally I am already on the road!

WillO, thanks for your reply. Interesting, I guess that I must be anaemic as I have all the symptoms...strange that the haematologist never mentioned this, I shall challenge him on my visit today!

Good to hear that your husband  now sounds very fit again. I just find it difficult to believe that I can’t currently do much and look forward to being able to get back to normal levels of activity.

Hey there,

I think everyone has covered the topic well. My only advice really is to take it all in your stride believe it or not you’re in good hands and the treatments for the very vast majority work.

Give it time be gentle with yourself and you’ll adjust and feel more like yourself in the coming months. The best way to deal with it all is ask questions here and know you’re not alone.

As scuba said once you reach CCYR (by proxy <1% PCR) you can mostly forget about it all.

You’re lucky in an unlucky situation. Carry on as normal.

All the best

Alex

Hi David,

I don't have much to add on the science side.  As you'll already have seen, the level of expertise & the breadth of experience on this forum is fantastically helpful.  & the warmth & understanding is a gift.

The only thing I thought worth mentioning is that sometimes the mental dissonance can be a tricky thing to manage.  Being told, in quick succession, that you have a disease that was (until v recently) deadly but can now be managed in a low-key way, can be difficult to process.  I'm more than 3 years since diagnosis & sometimes still find it hard to process those 2 extremes.  Overall, like Scuba, I see CML in a positive light in many ways - I feel lucky & determined not to squander a moment.  Of course I have my down days but, generally, I'm actually a more positive & less stressed person than I was before diagnosis - go figure!

Probably best to give yourself a few months, let things settle down, but I would recommend reading 'The Philadelphia Chromosome' by Jessica Wapner - the story of how scientists developed their understanding of CML & then applied this to find a cure is amazing.  It helps to understand what's going on in your body but also reinforces just how lucky we are to be living in 2020 with CML.

Take care of yourself - you've probably got a few ups & downs ahead so be kind to yourself.

Victoria.

 

I completely agree 100% on the Psychological aspects of having CML. For me this is the hardest part to process and may never will. How something so dangerous and deadly is managed with us popping a daily pill. For the majority of us we are very lucky indeed. But some have a rougher ride that we all must be mindful of isn’t it.

Many thanks to you all for your posts, help and advice. It’s hugely appreciated.

Having seen the haematologist yesterday, I gather I am to start the TKIs within 2 weeks.

Although I am not anaemic, I am generally feeling more tired each day, and less able to exercise, although I managed a slow 45 minutes this morning. I look forward to the TKIs doing their wonderful job.

It is so helpful reading everyone else’s experience and feelings about CML. I shall keep you all posted.

David

Hello Victoria

I very much appreciated your posted reply. It is interesting, because I think it still hasn’t dawned on me what has happened to me, and how one the one hand, I am very ill, and yet on the other there is an almost magical cure. So yes the mental dissonance between the two is only really just starting to sink in, and reality hasn’t.

Your advice to give it a few months is very wise and I shall take heed of it. I shall also try to obtain a copy of The Philadelphia Chromosone - sounds like essential reading!

All the best

David

Crikey, several miles of walking on hyroxycarbimide - you are doing well!

I used to get to about 7pm each day with normal activities before I couldnt really move and needed to rest for several hours. Your body will likely do strange things till your counts stabilised. Don't worry about what life will be like long term, till you get back to normal. 

I was on 15km hikes about 3 months after diagnosis, now 3 years later I'm not as fast uphill as I used to be but I'm about to move to my 3rd country since diagnosis and I find the impact on my daily life is minimal. 

Thanks for yours Eva, well I am not doing 3 miles any more! The last couple of days I felt very weak and useless. Have just finished the hydroxycarbamide, TKIs start soon! Very encouraging to hear that you were doing 15k after 3 months. Wow!

Started to feel that maybe something else was wrong with me as I have gone downhill so fast after starting the hrdrxy...

David

Hey David - Don't be concerned that you're feeling exhausted now, that's totally normal. Your body is dealing with a lot - hydroxycarbamide takes a shotgun to lots of those bad white cells in your body, so it's been in for a rough ride so if you weren't feeling very tired it would be unusual!

I know I was totally knackered for a while, and then of course you layer on the mental fatigue on top which makes it harder too.

But once you get on the TKIs, and they begin to get working properly (it's not immediate) you will start to feel better and able to be more active. 

David.

Hello David, many thanks for that. I certainly wasn’t prepared for how wiped out I have been feeling.

Rather than just totally knackered, I have been feeling faint/slightly dizzy when I do anything active. Not sure if this is CML or hydroxycarbamide related or not, the haematologist thinks not and has referred me back to my GP...

Watch this space!

David

Has anybody else had the symptoms of occasional light headedness and slight shivering with CML? My GP seems to think they are CML symptoms. In any event, starting Imatinib this week so hopefully this will eventually sort this out.