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Husband recently diagnosed

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Hello everyone!

My husband was suffering from acid reflux which was not abating along with some minor discomfort in his lower stomach on the left. A visit to the doctors (28th Feb 2023) placed him on a two week route for all the checks etc. However, the blood test result on the 1st of March 2023 -his birthday caused a call from the doctors to visit A & E. The WBC was 405 and the GP wanted him to be checked over. Hubby was in good spirits and felt well, but went to A&E. The further tests and full body scan led to a diagnosis of CML and an enlarged spleen-23cm- the reason for the acid. A week later, he was placed onto Imatinib.

Three weeks later, the WBC has come down but not sure what the rest of these mean in practice- know they are not normal range. Tiredness is the main side effect.

Also, noticed a few threads mention PCR-test but can't see this on the recent result slip. Hubby had the bone marrow biospy yesterday- wasn't expected this at the blood test ( letter was lost in the post) so I guess we are wondering what could happen next.

Thanks in advance

WBC 8.85 * [1079/L]
RBC 4.64 [10M2/1]
HGB: 126 [g/L]
HCT 0.401 [L/L]
MCV 86.4 [fL]
MCH 27.2 [pd]
MCHC 314 [g/L]
PETE 100 * [1079/L]
RDW-SD 60.5 + [fL]
RDW-CV 20.1 + [%]
PDW. 16.0
MPV 11.3 * [fL]
PELCR 37.20% [%]

PCT 0.11 * [%]

NEUT —
LYMPH 1.35 * [10%9/L] 15.3 * [%]
MONO 0.91 * [10%9/L] 10.3 * [%]
EO 0.22 * [1079/L] 25% [%]
BASO =

Hi Penny, I'm sorry to hear that your husband has joined the CML club. It is a challenging time but the most important thing to bear in mind is that with modern medicines it is highly unlikely that CMLwill have any adverse impact on your husband's longevity.

To deal with the specific question PCR tests are not very useful in the early days - they come into their own when the proportion of cells which have the altered gene is below 1 %. A test known as FISH where a sample of 200 cells are examined by microscope to see how many have the altered gene is more widely used in the very early stages.

Can I recommend that you look under the "About CML" tab above,and click on the newly diagnosed option. That will give you information about what is likely to happen over the next few weeks and months. There is more info about FISH and PCR testing under the Testing for CML option under About CML

The fatigue is likely a result of two things; the stress of the diagnosis and a side effect of the imatinib (assume he is on 400mg?). These should both reduce over time; some people find imatinib side effects very difficult and can be changed onto alternative drugs if necessary. The people on this forum have a lot of experience of dealing with side effects - don't let him suffer in silence.

There is a lot of information on the site - under Patient Info and News/Our Publications. Take that on board at your own pace.

Please let us know where he is seeing a specialist.

I hope that's a useful start. Don't hesitate to ask about anything which is worrying you.

Penny
So sorry to hear about your Husband,believe me when I say that there is hope I was diagnosed with CML in 2001,the only thing that they could offer me was to take part in the Clinical Trial for Imatinib that was taking palce 50 miles away from me in Nottingham,thankfully it suited me unlike some that were on the trial,so Penny 22 years later I am still here,still taking 300mg a day and regular 3 monthly check ups,Penny please keep the faith,there is totally hope ,best wishes to you both.