Hubby was recently diagnosed with Chronic phase cml. He spent 10 days on hydrea then went straight on to nilotinib. Had bloods done throughout the first 7 days ( while in hospital). Then three days into nilotinib had bloods done again. Specialist told us bloods were all good. Wbc down from 336 to 36.9. LFT all good. Told us to come back 5 weeks and to have bloods done 10 days before next appointment. So next bloods done end November ready for appointment on December 10. My question is should it be left this long? My hubby had bloods done Oct 31 ( had been taking nilotinib for only 3 days) next bloods to be done end November. I questioned his specialist who advised me that there is no need to have bloods done sooner than this however I spoke of my concerns regarding his other blood results and how they could be affected and he wasn't concerned at all. Just seeing how others were monitored when newly diagnosed?
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Frequency of blood tests for newly diagnosed
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Hi, my cbc was checked every 2 wks after diagnosis to make sure meds weren't dropping counts too low. Now monthly. I was diagnosed early September. I am sorry you guys are part of this horrific club but most people respond to medications from my understanding.
Yes, I see where your concern lies. With hydrea, super low counts are a worry. It might have been better to have had blood drawn after two weeks, but you're so close to the scheduled draw, I'd let it go and wait. The fact that the guy said his counts were good on that Oct 31 draw is a good sign. But, I think you would be justified to move the appt up a week, also. Your instincts are right.
Hi Mick,
We are already feeling much better with more understanding of CML thanks to the wonderful people on this site.
Take care,
Sharon
Hi Kat,
I decided not to wait around and had bloods done through our GP. We got them back today and all is going well over 3 weeks into TKI. He's not on Hydrea anymore ( only first 10 days and stopped when Nilotinib commenced) his WBC is now down to 4. Other levels are all in normal range apart from mild neutropenia ( level was 1.6). Hubby goes back for bloods in 2 weeks for the specialist appointment in December. I'm so glad he had bloods done this week so we were not waiting and worrying. Thanks for responding to my question, these first few weeks are a worrying time and it's good to know that my instincts and concerns are justified.
Take care,
Sharon
That's good news, Sharon. Be prepared for the numbers to go even lower for awhile. A good thing to do in order to forestall anxiety is to ask your onc what the parameters of safety are that he uses for these labs - in other words, how low does he let the numbers go before a drug break is called for. The reason I say this is, we all have fallen into the trap of worry over lab results that we never before (in our pre-CML life) gave a thought to - the doctor's office would call and say, all your tests were normal. 'kay. But as soon as a new CMLer starts getting all these blood draws and seeing the results coming back in boldface or in the abnormal column or marked with an L for low or an H for high - we freak out. What ARE all these things? And, what's the significance? And the onc is mum. If they would only explain it! But the mindset of doctors is so completely different from ours - they truly don't see what the big whup is - we should take them at their word that it's all OK. Anyway, a word from experience: just ask. I do remember I had to take a TKI break when my WBC was below 2 and the ANC was below 1 and platelets were around 50. But, ask him.
Hi Sharon, Here's a quote from the prescribing information for Tasigna: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=2ahU...
5 WARNINGS AND PRECAUTIONS
5.1 Myelosuppression
Treatment with Tasigna can cause Grade 3/4 thrombocytopenia, neutropenia, and anemia. Perform complete
blood counts (CBCs) every 2 weeks for the first 2 months and then monthly thereafter, or as clinically indicated.
Myelosuppression was generally reversible and usually managed by withholding Tasigna temporarily or dose
reduction [see Dosage and Administration (2.5)].
Here's another section that discusses when tests should be performed:
5.12 Monitoring Laboratory Tests
Complete blood counts should be performed every 2 weeks for the first 2 months and then monthly thereafter.
Perform chemistry panels, including electrolytes, calcium, magnesium, liver enzymes, lipid profile, and glucose
prior to therapy and periodically. ECGs should be obtained at baseline, 7 days after initiation and periodically
thereafter, as well as following dose adjustments [see Warnings and Precautions (5.2)]. Monitor lipid profiles
and glucose periodically during the first year of Tasigna therapy and at least yearly during chronic therapy.
Should treatment with any HMG-CoA reductase inhibitor (a lipid lowering agent) be needed to treat lipid
elevations, evaluate the potential for a drug-drug interaction before initiating therapy as certain HMG-CoA
reductase inhibitors are metabolized by the CYP3A4 pathway [see Drug Interactions (7.1)]. Assess glucose
levels before initiating treatment with Tasigna and monitor during treatment as clinically indicated. If test
results warrant therapy, physician should follow their local standards of practice and treatment guidelines.
Hi Kat,
I wouldn't have thought to ask about how low the specialist would be prepared to go before he stops meds. As you said, that will save us worrying even more if his numbers continue to fall but are still deemed to be ok with the Onc. We are discovering more and more each and every day and really appreciate the sound advice from your past experience, thank you so much.
Take care,
Sharon
Hi there,
Thanks so much for the Tasigna info and references. I had a gut feeling that leaving his blood test for a month was too long and I decided to just book him in with our GP to get bloods done in between, which would make it two weeks. I have read up on the info and see it also states about an ECG. He had one done before treatment ( while in hospital ) but never had another one done 7 days into nilotinib ( as is recommended ). I will be bringing this up with his Onc next month.
Take care,
Sharon