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Chronic Phase CML in 72 years elderly

Posted by riteshkundu @riteshkundu, Nov 22, 2024

My dad has recently been diagnosed with CML chronic phase, at the age of 72! He was administered 1000mg hydroxyurea thrice a day for 7 days to bring down the wbc count from 300,000 to normal range. Then Imatinib 400mg was started once a day, within 3-4 days of start, he started developing painful mouth sores, when we got his CBC done again, his wbc count came critically low to 1200. The doctor has asked us to hold imatinib for few days and keep monitoring his infections, fever etc and hospitalize immediately if fever is there. My dad suffers from chronic heart failure too. I am very scared of the situation and dont know how to manage. I havent shared CML condition with my dad. Please advise.

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 7, 2024
In reply to @riteshkundu "Hello Lori, nice to hear back. My Dad is symptomatically ok, mouth sores have reduced though..." + (show)
@riteshkundu

Hello Lori, nice to hear back. My Dad is symptomatically ok, mouth sores have reduced though not completely gone. Have been talking about mild pain in abdomen due to spleen enlargement. Had to give him 2 shots of grapheel this week to boost his wbc counts, which now came back to normal range, though his hamoglobin has dropped to 7.1 and platelets at 140, so doctor suggested not to reinitiate imatinib and keep it on hold till coming Tuesday and get the blood work done again to see improvements. The doctor is suggesting all these are because of those high dose of hydroxyurea, which should settle down. So playing the waiting game and hoping for improvements 🙏🤞

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Hi @riteshkundu! How’s your father this week? Did his recent lab work show more improvements with his blood numbers?

REPLY
1 reply
riteshkundu | @riteshkundu | Dec 8, 2024
In reply to @loribmt "Hi @riteshkundu! How’s your father this week? Did his recent lab work show more improvements with..." + (show)
@loribmt

Hi @riteshkundu! How’s your father this week? Did his recent lab work show more improvements with his blood numbers?

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Hello Lori, wbc counts improved, but hamogoibin and rbs were same.. Doctor started Imatinib again and today is 6th day since it started again. Tomorrow the tests will be repeated and have a doctor appointment on Tuesday.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 9, 2024
In reply to @riteshkundu "Hello Lori, wbc counts improved, but hamogoibin and rbs were same.. Doctor started Imatinib again and..." + (show)
@riteshkundu

Hello Lori, wbc counts improved, but hamogoibin and rbs were same.. Doctor started Imatinib again and today is 6th day since it started again. Tomorrow the tests will be repeated and have a doctor appointment on Tuesday.

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Your dad is early yet in his experience with treatments for his CML. It can take a while to balance out the meds and from his blood work, it appears he is getting positive responses.
You’ll find out more tomorrow with the doctor’s appointment. It does sound as though your dad has a very conscientious doctor with all the followups and monitoring of his treatment.
Have you been able to tell him yet about the CML? Is his doctor aware that your dad doesn’t know about his diagnosis?

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1 reply
riteshkundu | @riteshkundu | Apr 27 10:35am
In reply to @loribmt "Your dad is early yet in his experience with treatments for his CML. It can take..." + (show)
@loribmt

Your dad is early yet in his experience with treatments for his CML. It can take a while to balance out the meds and from his blood work, it appears he is getting positive responses.
You’ll find out more tomorrow with the doctor’s appointment. It does sound as though your dad has a very conscientious doctor with all the followups and monitoring of his treatment.
Have you been able to tell him yet about the CML? Is his doctor aware that your dad doesn’t know about his diagnosis?

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Hello Lori,
Apologies for delayed response. I did discuss with my father and he was shattered and heartbroken. It took 4 months to get over it and actually he hasnt been able to get over it but keep living this news everyday since I broke out.
He has been taking Imatinib regularly, his bcr-abl has come down to 6% post three months.. but his discomfort after having the medicine is never ending..
He suffers from severe stomach ache for 2-3 hours.. continuous belching all the time and keeps vomiting every few days. His blood counts improved marginally but then again came down.. his tlc stands at 1.2 and nutrophil count at 0.6 and platelets at 90. The doctor have advised to put imatinib on jold for few days ( this episode has happened 2-3 times in past 4 months and then we had to give him graphyl shots). All in all, just hoping for him to get adjusted to medicine and somehow by some miracle his side effects subsides.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | 4 days ago
In reply to @riteshkundu "Hello Lori, Apologies for delayed response. I did discuss with my father and he was shattered..." + (show)
@riteshkundu

Hello Lori,
Apologies for delayed response. I did discuss with my father and he was shattered and heartbroken. It took 4 months to get over it and actually he hasnt been able to get over it but keep living this news everyday since I broke out.
He has been taking Imatinib regularly, his bcr-abl has come down to 6% post three months.. but his discomfort after having the medicine is never ending..
He suffers from severe stomach ache for 2-3 hours.. continuous belching all the time and keeps vomiting every few days. His blood counts improved marginally but then again came down.. his tlc stands at 1.2 and nutrophil count at 0.6 and platelets at 90. The doctor have advised to put imatinib on jold for few days ( this episode has happened 2-3 times in past 4 months and then we had to give him graphyl shots). All in all, just hoping for him to get adjusted to medicine and somehow by some miracle his side effects subsides.

Jump to this post

Your poor dad is really going through the wringer on all of this! I’m so sorry to hear he’s having so much distress with the stomach ache, belching and being nauseated during treatment. Has he talked to the doctor about anti nausea meds or having a GI evaluation? That’s so miserable to feel ill all the time.
It will be interesting to see if the side effects subside with the break in his Imatinib treatments. Has his doctor been able to offer any alternative treatment to the Imatinib?

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