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So, my beloved husband (47) is a new member of the club. Diagnosed end of Feb. after a routine blood test. White cells were at 150something, spleen huge, got a call from a consultant at our hospital and asked to go in immediately. We thought it was something wrong with his kidneys, but we got a unexpected provisional diagnosis on the spot. They did a bone marrow biopsy that day and started him on chemo straight away. About 5 days later they retested blood and white cells gone up to 163 so they put him on Nilotinib. 

After four weeks on Nilotinib the white cell count had gone to 2! We were thrilled. We then were told that the platelets were too low (below50) and the Neutrophils were at 1 so they said he’d have to stop pills until these counts were in a better state. Ok we thought, so he’s been off the Nilotinib for four weeks exactly.  Over the last two weeks he’s been gradually feeling more rubbish and last week he was getting worse and could feel his spleen was big again. We had been away on holiday so he rested, slept a LOT and we knew he had an appointment today. By Monday he was feeling so crap I phoned hospital and he spoke to consultant who saw us yesterday and tested bloods. Slight better platelets, white cell count had gone up to 57 already. Consultant was concerned and put him back on Nilotinib for a few days but he’s got to be retested Friday and Tuesday. 

We are frightened that the white cells have gone up so quickly. Anybody had a similar thing happen? We have both read anything and everything on CML and are finding the whole rollercoaster terrifying. We understand in basic terms the disease and it’s stages etc. 

All help gratefully received. 

Thank you for being there.

 

Hi Belladoo
There are others on the site so much more informed than me but I totally feel your anguish and just wanted to reach out.

Do you know what phase he was diagnosed with - chronic, accelerated, blast?

Do you know what % of leukemia he had at diagnosis - it should be presented as a % as part of a BCR- Abl test result. My husband's was 89 %. Others present with over 100%. That percentage is the main one to watch as it shows how much leukemia is in his blood. it will be tested every 3 months.

My 50 year old husband was diagnosed last Sept, white blood count was 220k, spleen enlarged. He was started on dasatinib and after a worrying few days in which white blood rose, it fell really dramatically.

i know its really scary to see your husband's white blood count rise so fast but on the right TKI, it will fall just as rapidly again. I think my husband's went from 220 k to 4 in about a month.

the good news is that there are many options if the original TKI doesn't work. My husband's doctor chose dasatinib because of his enlarged spleen. He has had some side effects but how he feels now compared to.last Sept is not comparable.

My husband drank lots of water ( its important to stay hydrated), ate healthily and slept a lot. he was v cold and pale. but as his red blood cells started to.improve he has felt much better and has a lot more energy.

His platelets were normal ( now a bit low) so I can't speak to that but know others here have dealt with it and taking a break then restarting seems a common method.

this is a great community and support so I am glad you have found this site. it has been a life saver for my family.

Wishing you and your husband the very best.
Louise

Hi, thank you for replying. I get quite confused with all the numbers and info. We were originally told chronic but the figure was at the top end of the scale I think. But since then I’ve seen stuff that makes me think differently. So confused!

im going to write down all the numbers when we go next week to see consultant. 

My worry is the speed of rise and the fact that the blood counts for platelets and neutrophils means it’s dangerous for him to take therapy .

oh well, off to bed and switch off from this for a few hours.

Thanks for support. X

Hi Belladoo

Hope you managed a good night's sleep.

We were seeing my husband's oncologist today and he said he doesn't like platelets number to fall below 100 or hemoglobin level to fall below 10.5. I know your husband's numbers are way below those levels. The low red blood count really must make him feel very tired and ill.

As soon as his red blood counts rise he will feel so much better.

Did the doctor restart your husband on a lower dose of the drug this week? sometimes that is enough to reduce the myelosuppression. What dosage is he on?

Before your mtg next week with your oncologist I would read up on the alternative TKIs out there incase he wants you to switch drug. Some are not good if you have pre existing heart issues. One requires fasting. So some you may want to rule out. My husband is on dasatinib, started at 100 but now on 50 and doing well.

best wishes louise

Hi, 

hubby is on standard dose only for a few days to push down numbers then they will decide what to do. That’s why he’s being retested tomorrow and Tuesday. Our usual Doctor had been away but we’ll get to see him Tuesday. He seems very good. 

I hope you had a positive experience with the Oncologist too. The worry of it all!

I’ve looked at the other TKIs but the shame is that it worked so well but was toxic to the other blood cells. Fingers crossed they’ll get it sorted soon. 

Thanks for thinking of me. I did sleep quite well, which is a change!

very best

Bella

Hi Belladoo

wondered how your husband's doctor's appointment went Tuesday ?

best, louise

Hi Louise, 

thank you for thinking of us. 

Thankfully Tuesdays appointment was a bit more positive although I’m still worried. I got the doc to go through how stuffs been going and asked lots of questions. 

So going back to the beginning hubby had a BcrAbl score of 210% and White cells at 157. 

I asked him to confirm if chronic or accelerated and he said it was the top end of chronic taking everything into account. 

Thankfully he’s going to retest in two weeks so we can see how we’re going. It will be three months from original diagnosis then. 

This weeks test showed better results for the good cells so he restarted the Nilotinib for now. The levels are still low by well people’s standards but ok.

 

Thank you for taking the time to reply. Glad the news was better. I have never come across someone with such a high abr % at diagnosis. Neither wonder his red blood counts were / are so low and it’s taking a while for him to feel better. So glad they caught it though while still in chronic phase. It’s amazing when you look back and think how ill your husband must have been prior to diagnosis but yet life and he kept going. My husband put his tiredness and occasional aches down to turning 50! Afterwards when I looked at his really pale face, I couldn’t believe I hadn’t noticed something wasn’t wrong much earlier. For him, a really bad gout attack identified the CML. 

I am really glad your husband’s doctor took the time to go over and explain all the results. If you have any other questions this is also a good place to get them answered. 

Did the doctor check check his iron levels ? He must be very anemic I would think . 

Here’s to a steady recovery for him. 

Best wishes

Louise