I am diagnosed with CLL in 2003 and has been on wait and watch. Del 17 but mutated IGHV.
WBC count and platlets are stable for last 6 months with around 1 lakh and 1.15 lakhs respectively. Lymphocytes 90%.
Now my Dr feels treatment may be required in the next 6 months as spleen has increased to 18 cm. Also he feels nodes in shoulder is big, though I dont feel any difference.
Otherwise I am healthy with normal haemoglobin and RBC.
He has said Alcabrutunib is the treatment.
Can spleen increase be cause of start of treatment.
How did he decide on a medicine, when so many types available.
Kindly guide me
Written by
Ashwas
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If you do need treatment now, acalabrutinib is an excellent choice, given you are 17p del. However, you haven't provided enough information to work out specifically why your doctor considers it is now appropriate to start you on treatment. If only he said! Your lymphocyte doubling time is important, not that your WBC (and hence your Absolute Lymphocyte Count, which is a more accurate measure of your CLL tumour burden in your blood) is around 1 lakh (100,000 for those in the USA, 100 elsewhere). Importantly the 1 lakh figure is considered a trigger for starting treatment for other Lymphomas, but not CLL. We have members with lymphocyte counts several times higher than this in our community, who are still in watch and wait. The 90% figure is only useful in determining that your other WBC blood types are adequate. It's important to check the absolute neutrophil count is above 1,500 (normal range around 1,800 to 8,000), to confirm that you have enough neutrophils to fight off infections.
Your platelet count is approaching one older trigger for starting treatment of 1 lakh (100,000). However the 2018 update of the international guidelines (iWCLL) allows for platelets to go below 1 lakh, provided they are considered stable, that is, slowly changing. Mine dropped to just over half a lakh before my specialist said it was time.
With respect to the lymph nodes in your shoulder (I think you meant armpit, but your English is otherwise excellent), the trigger size is when they exceed 10cm.
The spleen size trigger for starting treatment is when it protrudes 6cm below the bottom edge of your rib cage (the intercostal arch). That can be assessed by 'tipping' the spleen edge, that is, feeling for its edge with your fingertips, or more accurately, by an expensive CT scan, which it appears is what you have had. That scan would also check for large, internal nodes.
True CLL specialists treat the person, not the numbers, when it comes to lymphocytes and nodes. Given you are otherwise healthy with good haemoglobin and red blood cell counts, it seems that you may be able to defer treatment, which is expensive without the right type of health insurance. More importantly, CLL treatments eventually fail, so it can be worthwhile delaying treatment to put off the time when your treatment fails and there isn't another next treatment. This is in part why we have watch and wait with CLL. Being 17p del has already limited your treatment choice.
I appreciate that obtaining a second opinion in India can be difficult, due to the lack of specialists who see many cases of CLL and who keep up with the changes in guidelines and treatments. Your specialist has recommended an excellent treatment drug, but it is also used for other lymphomas. I suggest you read the section on commencing treatment in the iWCLL Guidelines and decide if you can benefit from a second opinion. If you have difficulty finding an Indian CLL specialist, you may be able to arrange to pay for one via video conference call, perhaps someone overseas, if you supply your test results.
No treatment required for CLL at present in the absence of symptoms.Likely to require therapy within 6 months to 1 year in view of progressive adenopathy recently. Alcabrutunib will be prefered therapy.
Maybe, Dr would have written to prepare my mind . Not sure, till I meet him after 3 months.
However. he assured me that a final call will be taken after complete flow cytometry test(fresh) and CT Scan
FISH report says evidence of 17 p deletion in 24/200 cells( freq 12%).
Somewhere I studied if frequency is only 20% , then consistently del17p.Is it true.
IGHV mutation analysis says IGHV gene status is mutated.
Your doctor's view aligns fairly well with what I stated, given I lacked the extra information on how your CLL was trending.Generally IGHV mutation is the stronger prognostic indicator. Nearly all of the 17p del survival data is for patients treated with the non targeted therapy (chemo) treatments. These aren't applicable to you. We don't have survival data for acalabrutinib beyond about 6 years, as the early trials commenced about 6 years ago.
In 2003 since all this noval treatment were not there, I did not take specific FISH test Eventhough genetical study was done, which shows normal genes.Also ZAP 70 showed normal.
It was only in the year 2021, when my WBC started rising rapidly , I took FISH and IGHV study.
The FISH report indicate del 17 in 24 out of 200 cells(12% frequency)
Normally as far as I have heard for del 17 IGHV should be unmuted.
Since in this case IGHV mutated, I am not sure what should be the treatment option?
As your spleen increases in size you may begin to lose weight due to the spleen pressing against the stomach. You will have the feeling you are full and unable to eat much. This is another reason to start treatment.
Thats wild, we are all so different in our disease course. I just had a full body pre treatment ct scan. Spleen is enlarged at 15.5 which for me is causing alot of discomfort. My weight loss is about 5lbs every 3 or 4 months. I am 6'5", you would think there would be plenty of room for an enlarged spleen in my frame. Yours is 18 and does not even bother you?I start treatment next week and look forward to my spleen shrink!
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