blood thinners safe for me with CLL?

[duffymcgrif]

I recently had a heart attack and Dr. has put on new medicines including Coumadin, which is a blood thinner. My CLL has been on remission (thankfully) for a year or two now and I am wondering if this blood thinner would/will have any affect on my Leukemia. Does anyone know?

[SofiaDeo]

It doesn't affect the *CLL* as a disease. The potential problem, is that CLL patients may have low platelets. Patients with low platelets are at a higher risk for bleeding/complications from bleeding when in Coumadin.

So you will need to make sure you have monitori g tests ordered, and get those monitoring tests. Make sure your hem-onc knows you have started Coumadin.

If you like/want to eat any foods from those on the list they tell you to avoid, you *must* eat them regularly. Broccoli per se isn't the problem; not eating broccoli for weeks then eating it 2 days in a row, is. And if you aren't eating any of these foods, but at some point want to start, you need to communicate that/get monitored. Some people have very little effect changing foods, but others do, so you Must be tested to see if you are one that reacts strongly.

You'll likely need to note if minor cuts/scrapes don't stop bleeding. You can't just stick a bandage on and notice 3 days later blood is starting to soak through, you'd be better served putting on a new bandaid daily to make sure any cut or scrape isn't still oozing. I would make a note of the day a bruise started, and how long it took to clear up. If you notice some months down the line that bruises are suddenly taking longer to clear up, you'd want to tell your docs. This checking bandages daily isn't so much that you might "bleed too much" from a cut or scrape. It's more, if your cuts are oozing a lot, there is a *possibility* of internal bleeding that a doc would want to test for. If your bowel movements become tarry/sticky, you'll want to tell someone as well. Some of this information is probably in the drug information the pharmacy gave you.

So your life has become a bit more complicated now that you need to take a blood thinner. But the data shows that even if you have a higher risk for mi or bleeding events, your thrombosis risk goes down to the same as people without another disease state. Since a heart attack or stroke is a more urgent/serious event than most CLL related things, taking care of the thrombosis is the higher priority IME.

pubmed.ncbi.nlm.nih.gov/284...

[duffymcgrif in reply to SofiaDeo]

Thank you for the info. I will be sure to tell them at the testing lab (I go one week after starting thinners) for first blood check and I will be sure to share the CLL info with them.

[SofiaDeo in reply to duffymcgrif]

yes, tell the lab before they draw your blood, so they are prepared/no one panics, in case you happen to be someone who bleeds "more" rather than "less" from being stuck. Do you happen to have low-ish blood pressure? I think that contributes to why I don't bleed as much as expected. My platelets dropped since I got this disease, but I rarely ooze/bleed for long periods of time. However, we're all different, who knows if you will need to keep the bandage on longer after having blood drawn going forward.

Also, know that some of these "newer anti platelet drugs" as an intermittent injection you see ads for, can cause bone marrow suppression. It's smart of your doc to use the older Coumadin IMO. Since the CLL can affect bone marrow.

Admittedly, it's a bit of a hassle to deal with being on Coumadin, but I think it's safer overall than some MAB that can affect our marrow. Coumadin has been around for decades and decades, the risks and problems are very well known. As long as everyone knows about it (all your docs), and you watch your diet, and report oddball things plus do all the recommended monitoring, you should be fine.

[Poodle2]

I was on blood thinners for about 5 months when pregnant and diagnosed with CLL, it never affected my platelets or any other numbers.

[W00dfin]

I have been on Eliquis for 5 years. I had to stop Ibrutinib at the same time due to developing afib. My CLL has been in remission with no treatment. So far so good.

Best wishes!

[Aerobobcat]

Hi duffymcgrif, your post is something of interest to me personally.

I have been on anticoagulants for 58 years due to a pre-existing autoimmune condition (see my previous posts for clarity).

I had been on warfarin for 44 years up until I started my first chemo FCR for my CLL that was in 2010, this was followed by BR chemo, radio therapy for an enlarged spleen and also treated with other forms of anticoagulants whilst in treatment.

Whilst being assessed for the Ibrutinib trial at the Royal Marsden cancer hospital it was agreed that I should remain on Tinzaparin at a dose of 12,500 units a day this was because I had been on a high dose of warfarin in order to achieve an INR of 3-4 which was originally prescribed as a lifelong treatment.

Since then my Ibrutinib has been stopped after 10 years of treatment due to the risk of cardio toxicity.

However, since 2018 I had been receiving Apixaban which I am still taking although this is not appropriate for my condition which requires I maintain an INR of 3-4.

Since I am no longer on Ibrutinib I have lost some of the anticoagulation effects of that drug and this has become troublesome for me.

I am suffering severe and crippling leg pan similar to when I was suffering from repeated DVT’s, sadly my clinicians still maintain that the Apixaban is working for me even though unlike warfarin it is not monitored.

From my own experience I would argue that warfarin is preferable to other anticoagulants because it is at least monitored unlike Apixaban which from my experience once you are on it, it is largely forgotten.

My regards

Aerobobcat

[Flute117]

Is there a reason you were put on Coumadin vs Eliquis which has way less side effects and allows you to eat green leafy veggies?

[hhk50]

I have been taking Ibrutinib for 6 years and finally had a significant A-fib incident. They put me on 5 MG of Eliquis 2X daily and 25 MG of Metoprolol 2X daily. No discussion yet of changing away from Ibrutinib - perhaps my next session with the CLL doc.

[Ysabeau]

Two years ago I had a pacemaker fitted. This makes it necessary to remain on blood thinners for life. So far so good and that includes a full knee replacement. I hope this helps. I have been on watch and wait for seven years.

[Spark_Plug]

Which doctor? Did the prescribing doctor check with your oncologist?

[SofiaDeo in reply to Spark_Plug]

The doctor dealing with the heart attack prescribed it, and with a patient in remission/not on any treatment, one doesn't need to consult with the oncologist before prescribing any meds. Preventing another cardiac event is the higher priority here.

The prescribing doc should be copying any & all other docs currently being seen (even if only quarterly) on the prescribed treatment. Duffymcgrif, make sure your hem-onc is getting status reports, not just your GP.