Pulmonary Embolism, Anticoagulants and Breast Cancer

SoLinda

I would like to know if there is anyone out there who also suffered a PE or blood clots after having chemo and their suggestions for trying to eat a healthy, anti-cancer diet and keeping their Vitamin K level balanced while taking Warfarin ...  Also, if anyone is having Factor VIII  blood clotting level issues and problems keeping their INR levels regular ...  I'm still having weekly blood tests after 6 months on Warfarin and prior to that, over one year on Lovenox!  Because of extremely high Factor VIII levels, it was thought to be safer for me to continue on anticoagulants indefinitely or at least until I finish taking Anastrozole in 3 more years!

Alicethecat

Hello SoLinda

I developed tiny blood clots in the lung (pulmonary emboli) while on chemo too! After three months of daily Tinzaparin injections to the tummy I was switched over to Warfarin for six months. Seemed to go on and on....Sympathy.

Like you, my level never really stabilised so the dosing nurses just increased or decreased my Warfarin each week after the weekly blood test.

Good luck to you

Alice

SoLinda

Thanks so much for your reply, Alice!  Sorry to hear you have to deal with anti-coagulant injections and warfarin, too!  the injections weren't fun, but a lot easier than having to worry about my diet all the time!!!  With warfarin, they always say not to eat too much vitamin K, but I had to eat MORE veggies even though I was already eating a ton, especially the ones that contain the most vit K.  Think cabbage and kale with everything ...  My blood specialist laughs at me when I moan about having to eat cabbage for breakfast, ha ha!  I am treated by phone (as far as dosage is concerned) as I live in the middle of nowhere ...  I am waiting for results of another Factor VIII blood test - I had one after they took me off injections for two All the best!

SimplyAudrey

There is a newer drug out for treatment of DVT and PE...it's called Xarelto (rivaroxiban).  Granted it is new and cancer patients were probably not in the trials that brought it to market.....but it may be an option for those who cannot get regulated on Coumadin/warfarin.

Consider talking to your doctor if the warfarin therapy has been difficult to regulate.  It is at least worth the discussion if warfarin is troublesome for you

It is more expensive than warfarin, but no blood tests are needed, and the company does offer patient assistance if paying for it is an issue.

Papillon1

Is to definately linkd to chemo? My mum is having treatment for bc stage 4 and just developed embolisms

It seems there is always some new complication

She is self injecting daily. Wll this definately stop the dangers linked to the embolism?

SoLinda

Thanks, SimplyAudrey! I spoke to my dr. and he said there are a number of newer meds. to try if we decide to give up on Warfarin ... however, because they are all new - he and I both are hesitant to experiment!  Regarding the one you mentioned, I don't even know if it is available in Brazil yet.  At least it's good to know that there are other alternatives and I don't have to panic!

Papillon1 - so sorry to hear about your mom!  What the docs. here told me is that your embolism doesn't shrink because of the meds., but being on anticoagulants helps to not get anymore (though you still can).  There are many reasons why people get embolisms and not all of them are related to chemo.  In my case, I was told it was probably not due to a hereditary blood disorder because something would probably have shown up years ago ...  I was also told that the blood of people with cancer is in a hypercoagulable state.  It's excellent that your mom's embolism was caught in time and she can be on guard against developing others!  I wish you and your mom all the best. 

gonegirl

I developed a blood clot in the vein that my port connects to. I'm so needle phobic, my doctor put me on Xarelto. I've only been on it for a week, so can't tell you anything about it. My oncologist spoke to a hematologist who said the med would dissolve the clot. The onc is recommending keeping the port and says that means I stay on a blood thinner while I have a port (aka the rest of my days). Once I know more, I can report back. Has anyone had ankle swelling due to blood thinners? I guess there goes my hockey career.

clarrn

I just started xarelto after 2 weeks of warfarin where my INR never increased and I had ridiculous itching. I have to be anticoagulated to go on my tamoxifen. I had 2 PICC line induced clots so I guess I have to be on something. I was on tinzaparin for a year and preferred the constant Warfarin blood draws to those stinging tinzaparin injections!

SoLinda

Hi clarrn! I hope xarelto works out for you - especially since warfarin doesn't and tinzaparin hurts! Warfarin never worked out for me and I ended up having to have my INR checked at least once a week for a few years. That is a lot of worry! And blood tests ... And expense. Anyway, when I stopped taking an AI (Letrozole) because of way too many grim side effects which were worsening after 3 years and 3 months - drs. also told me I no longer needed to take warfarin to protect me from possibly having clots caused by an AI (this was last September). At my last 6-month check-up in March, I also stopped taking arrthythmia medication (atenolol), too!!! Hopefully you will not suffer from any gruesome side effects from Tamoxifen, and then if you stop taking that, you won't have to take any more anticoagulants (unless you have a genetic or some other reason you are taking them - drs. will definitely advise you at that time). For me, so far, so good ... and I always make sure I stay well hydrated, don't sit too long, eat a lot of greens and also things that I was warned would affect my INR when I was on warfarin (garlic, ginger, etc.). I can't say I miss warfarin and all those blood tests!!! All the best to you.