So I went to see my cardiologist since I hadn't seen him in 7 years.
I wanted to get him in the loop if I had any issues with my pending treatment for CLL.
The Nuclear stress test showed possible blockage so he is doing a catherization this friday.
My research on the internet has shown that" It is also possible for cll cells to infiltrate blood vessels, causing issues such as ischemic cardiac disease, which is also called coronary artery disease (CAD). " Rare but possible.
I am meeting with my cardiologist in the morning and my Oncologist tomorrow afternoon. Does anyone have any experience with infiltration of CLL to the heart.
So I have CLL cells in my spinal fluid which is rare so maybe I have them in my heart also???
hanks
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Rico49
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CLL is not really invasive overall. Blood gets everywhere, if CLL were considered invasive we would have numerous citations in the literature for various other organs.
A 2022 study asking this question (CLL and heart involvement) found it is possible. What it means, is unclear. Since CLL lymphocytes don't "attack" and invade most organs, they don't destroy other cells, they just accumulate. And even when they build up in bone marrow and nodes, problems generally arise because the number of the CLL lymphocytes affects/interferes with how the areas function. They deposit into tissues, and affect how they work, or various other proteins associated with CLL or the body fighting off CLL are present. The cells generally don't attack/destroy normal tissue. So what any infiltration may mean, is hard to say. It's not the same as some bacterial or viral infections that enter the cells, and try to take over/destroy the cells.
Treating your CLL would probably get drug to any CLL that is in heart tissue. I do not know how a possible sample could be obtained to test if it's CLL, if there is plaque or obstruction they could safely collect when doing the catheterization, you can ask, ahead of time. Don't just show up for the cath and ask about collecting a sample then. Talk to someone ASAP. If you have CLL in your CNS, it seems reasonable to me that you are possibly an "outlier" patient and may also have it elsewhere, it's a reasonable question to ask IMO.
Thanks Sofia I met with the cardiologist this morning and he cancelled the cath because my platelets are 80.
The medical literature says"Yes, it is possible for chronic lymphocytic leukemia (CLL) to infiltrate the heart¹³. Infiltration of the coronary arteries by CLL is not common and the possible role in coronary syndromes is discussed¹. It is also possible for cancer cells to infiltrate blood vessels, causing issues such as ischemic cardiac disease, which is also called coronary artery disease (CAD). This is where the heart does not receive an adequate supply of blood and oxygen³
I am meeting with Oncologist/Hematologist this afternoon. I 'd like to know how you can tell if the ischemic cardiac issue identified by the nuclear stress test is from the CLL or just plague build-up. For now the cardiologist thinks we got a false positive on the test and we'll wait till my platelets improve... Have a nice day.
A bioptome is an instrument used to get tiny biopsies of cardiac tissue during certain types of cardiac procedures. I do not know how easily a piece of plaque might be removed, or even if it's possible. If this is just diseased cardiac tissue, it should work. If a CT has shown a significant blockage at a specific spot, a sample might be removed and tested for CLL infiltration. However, this procedure does involve some risks. Even a minimally invasive surgical procedure can go wrong, and heart muscle/major vessels are not areas one wants to have something go sideways. Look at how ypur procedure was held with platelets of 80; if something goes sideways and they need to do a larger operation, that's not a great starting number. If you are concerned your CLL is metabolically active and is actively infiltrating the cardiac area, a PET might show increased activity. I lit up like a Christmas tree all over when I was initially diagnosed, which is one reason it was thought I had an acute leukemia. I do not know the extent that old deposits, possibly dead or dying but still "there" because the body has not recognized them as foreign, would show up on a PET. This is probably a question to ask the hem-onc (do older, dead or dying CLL cells show a lot of metabolic activity on PET) in addition to a cardiac disease/cancer specialist (how the vessels and tissue change and react to PET or CT or other scan). Image guided biopsy has been successfully done.
If you have plaque deposits in areas not near the heart or brain arteries, perhaps it's possible/less dangerous to remove a piece from one of those. I am not sure if anyone has had success removing plaque samples, since they often have tough coverings. And one breaking into pieces and lodging somewhere else is one of the risk factors when having any procedure to remove plaque. Even a laser ablation may dislodge a larger piece instead of vaporizing it. No way to tell ahead of time, that I am aware of. This would need to be discussed with a vascular surgeon/cardiac specialist.
How is your diet? I think it is almost impossible these days to find anybody your age who would have completely clear arteries. Occam's razor says that the simplest explanation is the most likely one. If you were in your thirties this would perhaps be a different case. But since the CLL cells are small and usually do not cause obstructions, methinks it's more likely that it is just plain good old calcification in the traditional way. But I could be wrong of course.
Last fall I had an ischemic MCA stroke. Previously I had 3 TIAs. Was it leukemia? The 5 1/2 years I spent on Ibrutinib ? Or just me? Knowing the cause would sure help me in my response!
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