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
HAEMOGLOBIN ESTIMATION 138 G/L
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 :)