CLL and blood clots

[Lease]

I have controlled Chronic Lymphocytic Leukemia for six years with diet. Stress kicked me into stage 3. I have done two two day courses of chemo. I had no idea that DVTs are common, so now I am on two blood thinners as well. Anyone else Harv this occur? How long did it take to resolve? Did you have to take the blood thinners for a long time prophylactically?

[nvp815]

I was diagnosed with DVT and bilateral pulmonary embolism a month before starting treatment for CLL. I was shocked by the diagnosis as I had some very slight swelling and redness in my right calf which I only had evaluated out of an abundance of caution. I experienced no shortness of breath so when the CT scan showed pulmonary embolism as well it was a very scary time. I was hospitalized and started on Lovenox injections twice a day for two days and then switched to oral medication- Xarelto. It took a month for my lung emboli to resolve but a couple months for the DVT to clear up. I remained on the Xarelto for six months. I discontinued the medication in April and now only take 81 mg of aspirin per day. I was told at the time of my DVT/PE diagnosis that the viscosity of our blood from CLL is a risk factor for this problem. I have had no additional issues. I remain active, try to limit extended periods of sitting and stay well hydrated throughout the day. Hope the DVT resolves quickly for you. Don't be surprised if leg swelling sticks around for several months even after the clots resolve. Wishing you well.

[Jm954 Administrator]

Hi Lease,

I'm sorry to hear you've got a DVT.

Treatment with blood thinners lasts anything between 3-12 months or even life long depending on what risk factors you have before the DVT. It's important that if you have any shortness of breath or chest pain that you go to A&E as clots can move into your lungs and can be life threatening.

Unfortunately, DVTs are more common in people who have cancer and the signs and the symptoms are something we should all be aware of. Usually patients have swelling, pain, warmth and redness in the involved leg.

Hope it resolves soon.

[kc1953]

I had a serious bilateral pulmonary embolism in May 2015 that could have been fatal. I spent 4 days in the hospital recovering. During that period they discovered massive lymphodenapothy which was diagnosed as CLL/SLL as they were trying to understand why I had developed a blood clot. It is apparently not uncommon for those with cancer (whether they know they have cancer or not) to develop clots. Blood cancers are especially prone to this. I have been on Xarelto for a little over 2 years, both during and after my BR treatment and will likely stay on this drug for the rest of my life. Since I started Xarelto at about the same time I started BR treatment, it's hard to know what side effects were from blood thinner or from treatment. But I have side effects now, so taking Xarelto is a non event for me. I AM more careful about handling sharp objects, but I haven't had any bleeding or bruising issues, and I've had several small procedures and knee replacement surgery requiring temporary stopping use, with no issues. Best of luck to you.

[L0ud-speak]

I had a stem cell transplant (matched unrelated donor) in Apr 2014. In May 2015 following a routine neck to pelvis CT scan, blood clots were detected in both lungs. An ultrasound showed a clot in my left leg. Totally unprovoked. I self-injected until Mar 2016 when I was put on an oral pill - Rivaroxaban (Xarelto). I'm female, 73, and will be on meds indefinitely so it doesn't happen again. BMB in Dec 2015 said "no evidence of leukemia in the bone marrow". 😀

[Justasheet1 in reply to L0ud-speak]

I'm so happy for you. 🍻

[vinnet]

Lease

I am cll stage0 dx 9 months ago. Can u give some details of your diet which kept your cll in control for 6 years.

Any other suggestions, dos and don'ts to extend w n w period? I am in India, doing YOGA and meditation.

Any particular food u recommend to improve immunity? India has huge epidemic of various kinds of flu...

thanks

vinnet

[kathypawpaw in reply to vinnet]

If you are in stage 0 your immunity must still be pretty good. The flu is spread through human contact so if you live alone you are in good shape. If your family has a lot of little kids in and out you will be exposed to more germs. Hand washing is always a good idea but with CLL you should be extra careful. Airplanes can be a risky for the flu bug too. I feel like you should follow a healthy diet of whole foods. Organic if you can but at least eat real food and exercise. Meditation and yoga are excellent. Good luck.

[vinnet in reply to kathypawpaw]

Thanks Kathy. Me and my wife with hardly any visitors to our place..

I try whole food , exercise and meditate. Still feel low body energy. I was keen to get specific advise on food which can help me feel more energetic and prolong my wait and watch period .

vinnet

[Oakster]

May I ask, what type of diet did or are you eating to control your cll?