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Newly diagnosed- Some questions


Hi Guys,

We are a young couple living in London, my partner is a 22-year-old female which was recently diagnosed with CML, and I will give you some insight into our story. 


My partner was diagnosed with CML 2 days ago, as they confirmed the gene bcr-abl1 gene over the phone. It got diagnosed pretty much by accident, as she had stomach/bowel pains and thought she was lactose intolerant; her GP referred her for blood tests and her WBC came out high. After the results, the GP contacted her again to get more blood tests carried out, however before her next appointment with the GP she got referred straight away to the hospital where the rest of the tests were carried out. Also to mention, she is 22 years old and in overall 'healthy condition'. In the hospital, we had a chat with one of the doctors and he mentioned it could possibly be CML, but has to be followed up by the gene test to have confirmation. So she got the test done and the result came as expected and she was diagnosed with CML, she also has a bone marrow biopsy on Wednesday before starting the treatment as the doctors reassured us there's no need to start the treatment urgently as it's in a such an early phase. The rest of the results were all good, except the platelet count which was elevated, which could be caused by CML. Therefore, my first question is: Are elevated platelets common in CML, and is the amount worrying? Also, the doctor mentioned she can take Aspirin (guess to make the blood thinner to reduce the risk of clotting?), but only after the bone marrow biopsy. Overall, when we had our first discussion with the doctor and he asked about all the possible symptoms of the CML, all of the answers were a NO, which gave us a good indication that it's in the chronic stage and it's too early for any symptoms to appear. I have attached some of the recent blood results, unsure what the bcr-abl1 % at the moment.

Overall, the whole process of diagnosis was pretty fast and the worst part about the whole diagnosis was the feeling of uncertainty when waiting for the blood results to come back. We also felt, not sure how to explain the feeling perhaps some sort of 'relief' that the type of cancer she was diagnosed with can be successfully treated in most people and I guess grateful that we were able to detect it by accident I suppose; in the chronic phase. Reading multiple research papers and starting to develop an understanding of the disease also helped us calm down. (going with the thinking it could always be worse )

I will attach my questions after the results.

 WBC  36  

Platelet count 586 10*9/l 

RBC 4.8


Haematocrit at 0.437 l/l

MCV at 90 

All liver functions test came out within the 'normal ranges' 


Questions: As of her young age, we are planning to have a family in the future and the doctor suggested to  'freeze her eggs', does this have to be done before starting the treatment? As she is currently in the middle of her menstrual cycle, is there a 'best time' for a woman to freeze her eggs? We are still waiting to be contacted by the fertility center

Is the platelet count something to worry about? I have read that it can be a normal occurrence with people that have CML, but just unsure whether her amount is something to worry about. 

We are both aware of the side effects of the treatment and that everyone responds to TKI's differently, we don't know which TKI she will be taking, but we assume it's most likely going to be imatinib. Therefore, what can we do to minimize the side effects, we are most worried about cramps and nausea or vomiting. 

What supplementations do you guys take while being on TKI's to help fight your side effects? We take magnesium, d3 with k2 on daily basis

We were always very cautious about what we eat, as we are aware that 'we are what we eat' and always followed a healthy lifestyle (which the diagnosis was even more of a shock to us). In short, we avoid processed carbs such as crisps, etc... and try to get as most nutritional values from each meal we prepare. Has anyone discovered any changes to their side effects when changing the diet? for example, certain foods to avoid? or certain foods that help combat the symptoms?

We always like to have a plan for the future, and our ultimate goal is to achieve TFR in the future and that's one motivator that shines a light in the tunnel. But we are aware that this is long progress and that the studies are still pretty limited, but the results of the destiny trials look very promising. Perhaps anyone here took a part in this trial and wishes to share their story? 

Any couples here that were able to start a family after the diagnosis?  Hard to find real-life stories and experiences of poeple on the internet :) Or perhaps articles or papers about having children whilst being treated using TKI's ? The doctor briefly explained this to us and the possible methods

That's it for now,  we are looking forwards to your answers :) 

ps, sorry for writing so much, looks like I wrote everything that just popped into my head. We also have a long list of questions for the doctors, but we always like to have a view of fellow people in similar scenarios :) 





Hi Kamil and welcome,

I am sorry your partner has to deal with a diagnosis of CML especially at such a young age. However, as you say, it gives some comfort that she is in chronic stage and her current blood counts are not of concern. Her platelet count is elevated and this is common when first diagnosed. I am not sure she will need to take low dose aspirin as when she starts therapy her platelet count will quickly return to normal range. 

Your questions:

Considering pregnancy: It is may be a good option to have ovum frozen before starting treatment just to be 'on the safe side' - however it really does depend on when you plan to start a family. 22 is generally very young these days, but that is a personal choice of course. Imatinib (or any other TKI) presents an elevated risk of causing abnormality to a foetus in the early stage of gestation (first trimester). This presents a dilemma for women of child bearing age. Many women have had healthy children after diagnosis, but there is an elevated risk, so usually women who are pregnant at diagnosis can either be treated with PEGylated interferon, see here, for the duration of the pregnancy or leukapheresis which is a procedure that syphons off white cells, so the disease can be managed during the pregnancy. 

The British Society for Haematology Guidelines on diagnosis and management of CML (pub 2020) has a section on pregnancy:

'Considering pregnancy'

'Information available from studies of TFR would suggest that MR4 sustained for at least a year in the absence of prior TKI resistance will enable approximately 50% of women to discontinue TKI indefinitely, and have opportunities to conceive 102 (Fig 4). The majority of the remainder will have molecular recurrence within the first sixmonths but if they become pregnant within this period, they may reach term without developing symptomatic disease. 

The more challenging scenario is the woman who wishes to conceive in the absence of a sustained DMR, and this is often associated with older age and/or societal pressures. Patients in stable MMR for 1–2 years who conceive soon after treatment cessation, may be able to complete their pregnancy without the need for any therapy. Other solutions include substitution of TKI with interferon during the period before and after conception, referral for in vitro fertilisation (IVF) procedures and re-implantation of fresh or frozen embryos after a further period of TKI therapy to achieve and consolidate a DMR.'

Imatinib side effects: Nausea/vomiting is well controlled by eating a substantial meal before administration of this drug. Taking imatinib at night before bed and after dinner does help with a lot of the side effects particularly tiredness. Leg cramps for most are inevitable but they are self limiting (around 12 weeks) - magnesium supplementation and heat packs are very helpful.

It is a good idea to get the D3 level tested as she may well have a low plasma level. D3/K2 (at least 5000 iu per day some take more) high Zinc, Magnesium (I take Mag-Threonate), Selenium, B Complex, E, C, Omega 3 - there may be others. 

Your diet is already good so not much to worry about - whole foods/well sourced protein etc.

Generally It seems that grapefruit/juice is not recommended as an enzyme it contains can elevate the amount of active drug in the blood. St John's wort herbal preparations are also not recommended for the same reason. 

Drinking lots of water throughout the day (I recommend preferably with Vit C powered) it also very helpful.

I am sure there are lots of other users of this forum who can advise - particularly on pregnancy etc. 

I have one question: where is your partner being treated? Hopefully a centre of excellence for CML.








While you are waiting for a full reply i thought i would mention one of the points you make.  Treatment should not effect fertility but  taking TKI s come with a high probability of birth defects while taking them.  Hopefully she will get to a point where her levels are low enough that she will be able to stop the TKI, even if it is just while she gets pregnant and through out pregnancy.  I am not aware of the need to freeze eggs but I am no expert so may be someone else will know more.

I was on immatinib to start with and had few side effects. Those i did have were minor.  My levels did not reduce low enough on immatinib so i was then moved to Nilotinib which again has few side effects.  You will need to wait to talk to a specialist to see which is recommended and any further tests that may be needed.

Hope this helps as a starting point but i am sure the complete answer will be given by her consultant..


Thanks for your reply, she is currently being treated in Guys and St Thomas hospital, unsure if it's a center of excellence for CML. If not, can we change hospitals that she's currently being treated in? 

Hi, I am not sure of Guys St Thomas' experience with treating CML patients. Maybe others have experience of being treated at that centre? You can ask to be referred for a 2nd opinion at another centre such as Imperial College (Hammersmith Hospital) which I believe sees the majority of CML patients at their expert Haematology Department.  Depending on which London borough you live in, you can ask your GP to refer you there. Others on here may have another recommendation.


Her blood parameters might be all over the place for the next couple of months, don't worry too much about them.

Immediately after diagnosis and treatment, my WBC went the right way but my platelet count went absolutely wild. It was a worry but they started to come down eventually.

I believe many women have taken treatment 'holidays' for the duration of their pregancy and had no issues.

Bear in mind that the Fertility treatment needed for defrosting eggs and getting them implanted is costly and tough going so your financial situation should factor into the decision.

Dr Hugues de Lavallade is at Guys & St Thomas’ these days, so I would say pretty well equipped really.

Yup, his our consultant very glad we have him. Pretty sure he came from Hammersmith :)

He was at Kings immediately prior to Guy’s. Every patient of his I have talked to speaks very highly of him, and in the few dealings I’ve had with him I have also found him to be an incredibly knowledgable doctor who explains things very well.

You’re in the very best of hands!