Just diagnosed

Hi Dawn. I’m sorry to hear about your diagnosis - it’s a difficult time. The bone marrow test will give a definitive diagnosis, but they can tell 99%+ from blood tests these days. The bone marrow test won’t tell you the phase of CML, that would be taken from blood but the vast majority of patients are diagnosed in the chronic phase.

It sounds like your doctor will put you on either nilotinib or dasatinib - both are “second generation” medicines. But in all honesty, all the drugs available to treat CML are excellent and imatinib (Glivec / Gleevec) is often the best choice for some people.

I’d urge you to read out “Just Diagnosed” section here: https://www.cmlsupport.org.uk/section/just-diagnosed

Here’s a list of questions that you might want to ask your doctor in your early clinic appointments: https://www.cmlsupport.org.uk/section/template-questions-early-meetings-...

Right now everything probably feels really overwhelming. I know it did for me when I was diagnosed. For me, the best way to deal with it was to learn as much as I could about CML, so that way I could have much higher quality clinic appointments with my doctor. You’ll find loads of information on this site - both in our articles and on the forum - and of course make sure to make use of all of us here who’ve been through this before.

David.

Hi Dawn 

welcome to this very supportive community. I am so sorry you are experiencing cancer for the second time around. 

For my husband ( who is the one with CML) and me the first few weeks where you are now was surely the most scary part as you deal with the shock, all the waiting and uncertainty. As soon as he was diagnosed my husband also felt much more ill, now that he had a label for all these symptoms that had been bothering him for probably a year. I remember thinking how did I not notice how pale he was ! 

What helped Paul was drinking a lot of water (helps with headaches) , having lots of layers of clothes ( because even here in California he was always freezing for the first few months), eating healthily ( pizza for example made him feel sick) and most of all going to bed and shutting the door and sleeping when he needed It rather than trying to push through .

I would recommend you taking someone with you to appointments to help you remember everything the doctor tells you , and if you can, get results ahead of time so you can go armed with questions. Or if not ,ask the doctor to tell you what is the key information you should focus on. Otherwise it can be very overwhelming. But you also have this forum to help with that :)

Paul really did begin to feel so much better by two months in as his red blood cells started to bounce back . And now apart from some worries over ironically now low white blood counts  , he is doing really well and pretty much has a normal life , except for taking a pill every day ( and vitamin D,  Curcumin, etc) . 

Best of luck to you,

louise 

Hi Dawn

Don’t worry too much about your appetite. It will bounce back I bet once you start to have more energy. And back to forgoing the extra clothing layers as well. 

 I really can’t stress how much better Paul felt 2 months in, compared to how he felt at diagnosis. People all have very different journeys but I really think it helped him just to focus on the positive. 

There is some good information on here about supplements : curcumin, vitamin D3. I would def recommend asking your doctor to test your vitamin D level. We waited nearly a year to do that and although Paul was within normal range , he was too low for someone with cancer. Everything you can do to help I say ! 

Best to you and reach out anytime. We felt very alone when he was diagnosed esp as all our family are in Europe. Coming here was a real life line. 

Hi Dawn

I don't really have much to add except to say that we all remember what a terrifying and emotional roller coaster the first few months were. Any advice I would give is to write down all your questions before you have an appt with your haematologist. We all remember what we would have said just after leaving! I think I had about 30 questions at one of my first appts but my doctor was fortunately patient. Try not to worry ( is that possible in the early days??) as most of us go on to live out a normal life span. We have what they call the "poster" cancer in that much is known about it, it is easily quantifiable and measured by the regular blood tests and we have a choice of 5 medications ( known as TKIs) to take so plenty to fall back on if the first one isn't working as well as required.

It's important to drink lots of water and to take the tablet(s) regularly. Ask any questions you may have on this site as someone will always get back to you and some on here are extremely well informed.

You are certainly not alone and the prognosis for CML is very positive

Be careful what you read on the internet as some info is very out of date and therefore scary. This site is excellent with sound information

Best wishes

Chrissiex