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Recently Diagnosed with CML

Hello,
I am 36 years old and was diagnosed with CML at the end of November. I spent 2 weeks in hospital but am now at home and on Imatinib (Spirit 2 Trial). I have had a couple of follow up appointments with my Consultant and am told that my blood counts are now normal.
I am still finding it difficult to get out of bed in a morning and feel sick for an hour or so after taking my medication. Is the tiredness usual and will it get less with time? My husband is great and my mum has been helping with my children but I would really like to get some normality back.
This is all new to me and I would really appreciate any advice on what steps I should be taking to increase my energy levels and stay healthy; foods, supplements, exercise etc?
Also, I am off work at the moment, how soon do people usually go back to work? I am office based.
Finally, I would like to meet up with other CML patients, how do I go about finding people/groups in my area?
Thank you in advance for any words of wisdom!
Kind Regards,
Sarah

Diagnosed June 2012

Hi,
I am 39 years old, I was diagnosed with CML in June 2012. I am being treated with Imatinib. I have struggled to get my head round my diagnosis as it was only discovered following a routine blood test and came like a bolt out of the blue. I initially took 3 months off work until I adjusted to treatment. I have suffered with side effects such as, headaches, nausea, tiredness, gastro and bowel problems.
I found that taking the tablet with an evening meal , plenty of water and some metachlopramide helped with nausea and tiredness.

I returned to work (office based) on a phased return for 6 weeks, but during this time I started to haemorrage and was admitted for gynae investigations and blood transfusions. Both my consultants concluded that Imatinib was the probable cause. Treatment was stopped 2 months ago while my options were discussed. Radically I decided to have a hysterectomy, as a finite solution to my problem. The operation was carried out 2 weeks before Christmas. I have recovered well. I will see my haematology consultant tomorrow, I am dreading taking imatinib again, but this seems to be my best option at the moment.

I have four children, the youngest two are only aged 4 yrs and 19 months. The diagnosis and treatment has had a massive impact on my family and working life.
I would also like to get back to normality. I am hoping that I will adjust to the treatment quickly, second time around, and live a relatively normal life as the other comments you have received suggest.

I am trying to remain positive and would like to offer you my support.
I can totally understand how you are feeling at the moment. It feels difficult to plan ahead etc

I had good support from my clinical psychologist who works along side my consultant. I initially felt very isolated as I did not think there were many people my age with CML, still having to work and bring up young families. I am also on the look out for a local; group to join, specifically for CML in the North West.

I look forward to a healthier new year!

Wishing you all the best for the future, Sally

Sally

Dear Sally,

It seems that there are some women who do react badly to TKI therapy. This is a rather under-investigated area, and I have been trying to set up a survey aimed at women who have had menstrual difficulties exacerbated by TKI therapy. It is quite difficult as individual's menstrual cycles are so different it is hard to find what cold be termed as 'normal'.

I am sorry you have had to opt for hysterectomy- this is a hard choice even under normal circumstances never mind along side a diagnosis of CML. But it is good to hear you are recovering well.

Imatinib is not the only choice of TKI open to you- you could ask your haematologist if you can try one of the 2nd generation TKI's one of which might suit you better. Nilotinib is currently available in both 1st and 2nd line with dasatinib currently available through the cancer drug fund. Of course there is also the choice of bosutinib and ponatinib through the various clinical trials. Each of the above TKIs have different side effect profiles.

The issues surrounding an individuals Quality of Life is so important and given your experience with imatinib is highly relevant in your case. You should not be put in the situation where you are dreading taking imatinib again when there are other highly effective alternatives that are (dare I say it) even more effective than imatinib.

If you are in the North West and near to Liverpool, you might find that there is a support group based in that area. I am not sure if it is still active but I will try to find out and let you know.

best wishes,
Sandy

Thanks Sally

Hi Sally,
Thanks for your message and offer of support. Communicating with people who have been through this experience is really helping.
I hope the Imatinib does not cause further problems and you have a healthy and happy 2013!
Sarah.

Pills and timings

Hello Sarah

Like you, I am on the Spirit2 trial, and on imatinib. I've been on it for over 3 years now, and I can say that things definitely do get better.
I take the pill with my evening meal - and plenty of water - and find that works well for me. At the beginning I tried taking it earlier in the day, but I find that the evening routine is best, not just because of feeling sleepy, but it isn't hard to remember it then.
The tiredness is very common, and there's not a lot you can do about it except try and get as much sleep as you can, but also take what exercise suits your routine. Above all, don't try and understand everything at once - there's a lot to take in!
You didn't say where you are being treated, but there may well be a patients group near you, and the hospital may be able to help. There is also an annual patients' seminar, which takes place in different parts of the country in late autumn. This year it was in Glasgow, but I spoke to people who had travelled from Manchester and Merseyside to attend. Keep a look out on this site for details later on in the year.

Best of luck!
Olivia

Thanks

Hi Olivia,
I live in Chepstow and am being treated at the Gwent in Newport - I will ask at my next appointment about any local groups.
I will also ask about taking my medication in the evening. I was originally told to take it in the morning but am not sure why or if it matters?
Thanks for your advice!
Sarah

Recently diagnosed

Hi Sarah, I am sorry to hear you have been diagnosed, it is a huge shock but there is lots of support on here. When i was first diagnosed it took many months to accept it ( I still have not really accepted I am ill) Mine came at age of 53 after a blood test for a skin rash. I am also on Imatinib on the Spirit trial, and have been diagnosed just over 7 months now. I also suffer sickness, my tip is to have the tablet with a large meal and lots of water. I was sick several times in the early days but have it reasonably under control now. I also suffer with the tiredness, and try to take the tablet reasonably late as then i can sleep easier as it makes me feel tired about half hour after taking it.The doctor told me to take it in the morning but this just made me ill all day, and he said evenings are fine. I was off work 3 months, and went back on reduced hours to start off. You will find eventually you can adjust your times and day to suit your lifestyle with the medication, but it still has an impact on me but nothing near as bad as it did at the start. Sandy who runs this site is extremely knowledgeable about all the technical stuff, and the people on here are very nice and reassuring. There is also a Facebook site run by Nigel, which is great as you can chat to people individually or as a group, and I found it particularly reassuring that you can see that everyone looks normal and healthy! I think when we get told that awful word Leukemia it is very shocking,and you imagine all sorts of terrible side effects, but we luckily have a very treatable 'variety' and it's not as bad as you think! The long term prognosis for us is that we have probably the best overall survival of any type of cancer.There is some research on fish oils, so i take a vitamin supplement and Omega 3 fish oil every day. I don't really know if it helps but it makes me feel better that i may be improving my general well being with the vitamins. Hope this helps. Julie

Thanks

Hi Julie,
Thank you so much for your response. I will ask my Consultant about taking my tablets in the evening as that would make a lot of sense. I will also try the fish oil.
Sarah

Timing

Hi Sarah,
Welcome to this forum and website.
I agree with all the advice that both Olivia and Julie have given regarding the side effects that come with imatinib- nausea should be easy to deal with if you take it with your largest meal of the day i.e lunch or dinner, and with as much water as you can take in one go.
I found that sparkling water is easier to swallow in large amounts - (London tap water always makes me feel sick!)- you could also try adding a little apple juice.... by the way do not eat grapefruit or drink its juice as it increases the plasma level of imatinib (and all the other TKIs) so the severity of any side effects would increase.

Taking your therapy at the same time each and every day (give or take an hour or 2) is the most important thing, so it does not matter whether that meal is at breakfast, lunch or dinner. To deal with the fatigue/tiredness I agree that it is better to take it with dinner, that way, as Olivia has said, you can sleep that effect off.

Feelings of fatigue is a common side effect of imatinib but... the shock and stress of diagnosis can also cause you to feel tired - quite normal when you think about it.

Another reason might be your HGB count - if it is lower than 10, that will also make you tired a have less energy.

The day I was diagnosed (1998) my HGB was hovering at around 6 (normal is anything between 12-16) so that explained why I was so tired, pale and breathless. After I had taken imatinib for a few weeks and my counts got back to 'normal' my HGB level was still pretty low and never really got higher than 10.
Imatinib does have a suppressive effect on HGB levels and this is maybe why most people do feel pretty tired. However it does get better with time and you will find you will adjust accordingly.
Exercise really does help- a daily walk, a gentle swim or a yoga class can do wonders to increase energy, even though that might sound counter-intuitive.

Please do keep us updated and do not try to understand everything all at once.
The most important thing for you to know at this stage is:
*you are not alone,
*you will get back to normal and
*you will be able to return to work- probably sooner than you think,
*this kind of therapy has revolutionised the prognosis of CML and given time your life will return to normal.

best wishes,
Sandy

Thank you

Hi Sandy,

Thanks so much for the info - it is really useful, especially the advice about timings and exercise.

Your 4 bullet points at the end are a real comfort too - I am starting to feel much more positive now and am looking forward to getting some normality back.

Thanks again,

Sarah