How many of you have been out in blood thinners? I have been on Eliquis for the past year and a half. I take anastrozole and Ibrance and got a blood clot from a flying. I have not flown since and don’t plan to at this time. Never have blood clot shown up in my scans since taking eliquis. My problem now is my arthritis is so bad I can’t do anything. Since I was young I’ve taken Indomethacin for it and never a pain. I was taken off of it when I started the eliquis. Can’t take any aspirin on eliquis either. Talked to my oncologist and he said I can’t stop taking the eliquis. He gave me celebrex which did no good. The arthritis pain is unbearable so Sunday I quit the eliquis waited three days for it to clear from my system and now for two days I’ve taken the indomethacin. Tada, pain is gone! Not sure what to do? I will run out of the indomethacin and not sure who will fill the px. I’m just wondering how many with MBC have been put on blood thinners as seems cancer abs blood clots go hand in hand? Wondering why I was not put on blood thinners before I flew? No problem before then. Thanks for listening to my long letter. Hugs!
MBC, blood clots and blood thinners - SHARE Metastatic ...
MBC, blood clots and blood thinners
Me. I was diagnosed with MBC in August 2022 (original cancer was diagnosed November 2015, finished treatment October 2026). We went to France and London this past March (I’d flown to Spain in January with no problem) and four days after my return I had my routine scans at MD Anderson and they found a DVT in my thigh. Immediately started me on Eliquis. I just saw my local oncologist (she put me on Enhertu) who said I’d be on it forever. Cancer predisposes you to form clots and if you’ve had one then you’re at an even higher risk.
It’s bummed me because my biggest passion was traveling. I’d already resigned myself to that I needed to only travel to places with accessible quality medical care (I won’t be going back to Morocco, Egypt, the Amazon, or sub-Saharan Africa again) but now I am scared to fly at all. I had worn compression knee-highs (maybe should have struggled into thigh-highs!), and we splurged and flew business class specifically so I could move around. 🤷🏻♀️
I haven’t had to take any pain meds yet so I don’t know an answer to your question. I have two bad arthritic knees and a bad hip, but at this moment they’re pretty good and aren’t in a flare- up.
I was diagnosed in June of 21. This pain I have is excruciating. Yesterday it was so bad as when I used the restroom my husband had to pull up my pants, every time. This was after he had to dress me. If I had a choice of living two months in pain or one month pain free I’d take the one month. Nothing in life is guaranteed. I love to travel, we lived in London for six years, saw most of the UK, and as much of Europe as we could. We done some travel in the past two years and was to return to England for a wedding and had to cancel due to pain last year.
Thank you for your support and help. Best to you also in your journey. I’m sure my dr won’t be happy when he finds out what I’ve done? Hugs
I admit I’ve resorted to the type of “house dresses” (the pull-over-like-a-muu-muu kind that as a kid I made fun of my mom for wearing) for the times I can’t pull up my slacks/yoga pants. We’ve put grab bars and toilet bars in the bathrooms because with my issues I can’t use my legs much to push up… I use my hand/arms to pull myself up. 😟
(And I’ve tried to use those grabber things to pull up my panties but that doesn’t work so well 😜).
The only time I have gotten a clot when flying is when I went off my Eliquis because of a trial I was starting. I was flying all over the world with no problem. Keep flying and enjoy yourself
Hmmm… thank you Worldtravel75 for that nugget. I’ll hold onto it. I’ll be much happier thinking I can fly somewhere again, even if it’s short-haul domestic. ❤️
I flew to Myanmar while on Eliquis. No problem. I’m too sick now to travel so continue doing it while you are okay. I used to fly to Europe 3-4 X a year
Thank you. I’m sorry you cannot travel now but I’m happy that you had the experiences and now the memories.
Because of the things my grandparents and parents went through… waiting for retirement but then not being able to enjoy it (so sad), I’ve always have that motivation to “do while can”.
I wasn’t able to travel internationally until my mid-fifties but since then I’ve visited 38 countries. Several were with women’s tour groups when my husband couldn’t or didn’t want to come. I’ve got worldwide friends now that I am in regular touch with.
I’m so thankful I went ahead and did as much as I could. I have so many good memories. ❤️
I am on Ibrance, have not been on blood thinners but know about the serious risk ibrance and cdk/4 -6 users have regarding blood clots .
Since you are in pain due to arthritis that the drug indomethacin was able to control I wonder if a doctor would consider installing a watchman device ?A watchman prevents blood clots from forming in the left heart chamber. My father had been on eliquis for many years but started falling often (mobility issues at 88) so they installed a watchman to take him off eliquis as fall risks on blood thinners are dangerous.
My dad has not had cancer but has a variety of cardiac and age related health issues .
The watchman device is for people who develop an abnormal heart rhythm called atrial fibrillation. Because the heart “fibrillates” blood going through the heart chamber tends to pool in a small sac that is attached to the heart and causes clots to form. The watchman device closes off the sac so no blood can pool. It will not prevent clots in other parts of the body. There is a filter device that is put in the vena cava to “catch” clots before they can get to the brain and cause strokes, but it has some problems. There are all types of things being developed to take people off blood thinners, wouldn’t hurt to discuss with the MD.
Right - like I said my dad's cardiologist recommended it not for a fib but due to his serious fall risk (after several falls with fractures). However , my father has an extensive cardiology history - just not a fib . Mom has that 
It's not ok for oncologists to expect us to live in pain due to other issues such as severe arthritis . For sure I'd see if there aren't any other options that could allow Sharon to take the medication that helps her live pain free .
I take Celebrex and it works well for me .
Thanks, I was given Celebrex did nuthing for my pain. Took several different opioids, morphine, Fentynal patches, nothing helped. So best I try my own methods and I live in Oklahoma so my last resort will be medical marijuana. Thanks to all who replied and everyone of you was a great help! Hugs and best wishes to all of you!!!
I am so sorry - I sure hope the medical marijuana helps . Keep us posted , ok ?
I will! Thank you. 🤞
I am so sorry to hear about your pain. I am also on Eliquis and have arthritis in my hands. I get anaphylaxis from aspirin and nsaids, so I haven’t used them for about 40 years. Heat works best for me. I love those long lasting Thermacare pads. When my asthma flares up and I have to use prednisone, I notice that helps too.
I have been on Ibrance and anastrozole for 6 and a half years.
Thank you for your reply. I haven’t tried Thermacare pads. I know salonpas doesn’t work. I used frankensece oil today and that really worked well. Tomorrow I’m getting some turmeric to try. There are so many things you can use if you’re not on eliquis. Someone stated 2 glasses of red wine does the trick too and maybe with that I’d be sound aff as keep at 1:06 am? Hugs!
I’ve not had blood clot issues, but I haven’t been flying for other reasons. For 20 years we lived mostly in several European countries and Japan. So, I was a huge traveler. I have suffered from anxiety in my life, but it’s definitely worsened a lot now. I’m thinking it’s my lack of estrogen basically making me scared of my own shadow! The smallest unknown movement starts me sweating and panicking. My last long haul flight was pretty much a roller coaster and my Xanax didn’t even work. Now just going to the airport to pick someone up makes my hands sweat. I missed a dear friend’s wedding in Ireland because I just don’t think I can do it anymore. I feel like a traveling failure, and would love to visit family. I’m really thinking it’s a chemical issue and I just can’t seem to overcome it. I live in the US, but feel so much more at home in Europe. I am VERY grateful where I am and with the medical care I have. I just feel like such a wimp after so many years of flying. Although it certainly isn’t what it used to be. Does anyone else feel like this?
We lived in London for six years. I missed a wedding there last year due to the pain I was in. I regret it so much. We traveled so much in Europe and I miss it more than anyone could guess. Travel in the US just is not the same. Life to me just is not worth living anymore with the pain I’m in. If I had to choose one month to life pain free or two months in pain, I’d definitely take the one month. Thanks for your input and hugs!
No, travel in the US is not the same. It’s so frustrating to think we’re home bound with no hope of return to Europe. I was born to live there. I speak 4 languages and now it’s just English. 🤷♀️ That’s life I guess. I hope you get some pain relief!🍀
My husband takes elequis he was told he could take Tylenol for pain. Dont know if that would work for you.
Tylenol does not work. There is no relief. Hugs!
Have you tried opiates? Like morphine ER, I am on opiate therapy due to neuropathy in my left arm from the tumors underneath my armpit and collarbone area. It doesn't take away all the pain but it makes it manageable. I can function somewhat "normal."
I’ve been on many opioids, morphine, and Fentynal patches to no relief. I’m hoping turmeric and francense work!🤞hugs!
I used to live in the states, as I am American but, have lived in Europe for the last 20 years. I travelled here in the late 90's. Lived in a country for just a few and returned to the states. I hated it. I have free healthcare and do't have to worry or wait about an insurance company approving a med to keep me alive or for surgery. I totally understand what you both are speaking of. Now, I travel back to the states to help my eldery parents and my sister asks me when I am moving back to help more. I also use essential oils for pain evn though I have a prescription for heavier meds. I don't want to take them. I only take 100-200 mg of ibuprophen when it gets bad. Frankensense is great, so is thyme and ginger/lavander for joint pain. I also use cbd oil that has all the best essential oils from green planet. My 81 year old mother got off narcodics for back/joint pain and uses these. Greenplanetus.com I also use bio-freeze and you can get arnica gel at walmart or walgreens. I use peppermint oil and olive oil mix when flying on my legs which helps a lot with the ankle swelling and knock on wood, I have not had issues. I also use melatonin now when I need it to help sleep because of aniexty and omg, it really helps with jetleg. I asked my dr.'s if I was ok for travel and they gave me the green light. Just putting a bit of lavander oil on my wrists when flying helps calm me down and I get wheel chair service so I don't have to walk too far. Makes a hug difference. Hope this information helps. Blessings
Thanks, I put frank essence on my back yesterday it helped. Lucky you not living in the US! I lived in London for six years and loved every minute of it. US healthcare is not the best when you’re on Medicare! Hugs! Enjoy your travels!!!
yes ! I have such anxiety driving, especially when there are a lot of big trucks, rain, and of course heavy traffic. My kids are always worried, my son says he can’t believe how wimpy I am! I used to be afraid of nothing! lol
I’m on ibrance and anastrozole, going on 5years. I have not had any scares with my blood, thank God. I’m sorry when we have to make such hard choices, like pain or blood clots. Or missing family, not being able to fly.
Blessings
I’ve been on ibrqnce etc for 2.5 yrs, recently had open heart surgery(new valve) so been on warfarin for 3 mths as higher risk of clots. Had one clot in 2003 (long time before cancer appeared ), thrombophlebitis, and also have genetic factor V Leiden with 5% higher risk of clots. I’m Moving on to daily aspirin so big risk of stomach ulcer issues and can’t take the omeprazoles etc for protection as interfere with palbo.
im back to drinking a lot of ginger cordial (anti inflammatory) and wear the shitty socks when driving any distance (>40km), do waist down seat dancing as I drive and get out to stretch as often as possible. getting affordable travel insurance is near impossible but when I want to take the risk in flying I’ll request low dose heparin shots, keep hydrated and walk a marathon round the aisles (when allowed) and Will ask for the seats with more leg room. But mainly am aiming to ‘do a greta’ ie use travel modes that allow me to move around (boat, train,bus/ coach, bike) and are more eco friendly as that’s the one thing I do have- time to travel.
I’m having to learn to find joy in exploring closer to home and am blessed in having lovely green hills to walk around. Might ask for thigh high socks but have no idea how to put them on as live independently and both shoulders knackered (from left and right breast cancer) and putting them on including lymphoedema sleeve is so exhausting and almost impossible in hot weather that I would literally have a heart attack. Probably should wear cover ups to hide these wretched green, white, and tan coloured garments from public scrutiny but can’t be arsed and tend to ignore/unhear any rude comments. And pretty sure these garments not available according to skin colour (well not in the uk) so even more noticeable for some. Though I’ve just had an idea - I might tie-dye them.
So I hope you do get to travel and explore as much as you want. I’m going to stick a note in my diary for a years time and see just how much I followed my own advice!
Travel is what I miss the most. I am going to try natural things as francense ginger and turmeric. I lived in London for six years and that’s where the travel bug but me. Enjoy your beautiful country and how I miss the British humor!!!! Hugs!!
Hi I have pretty knee high compression socks off Amazon and I can get them on even with a bad left arm and hand. I have swelling of both my ankles. I have the socks in different colors and in patterns. I also will wear long dresses and knee high boots depending on what I am wearing. You may be able to get them off Amazon where you are at.
I wear toeless compression socks. They help a lot! Hugs!
I wear compression socks too and I have really cute ones.
Thank you
I am on Eliquis indefinitely because of a very serious PE in 2018, I had been on Celebrex for many yrs and they took it away because of the threat of bleeding but I begged and begged to get it back as nothing else (that is allowed w/Eliquis) worked for my joint pain. Finally My Onc contacted my Cardiologist and told her it was a quality of life issue for me and I needed the Celebrex back even though it comes with some risks. I have been taking both now for yrs with no problem. Perhaps a Dr would go to bat for you to get the Indocethin back for you! Maybe a pain management Dr?
I tried celebrex no relief. Indocine is a no no. Pain management was a joke! I’m going to try turmeric and other natural remedies and oils to see how that goes. Thanks for your advice and hugs!
Hi! I was put on Eliquis two years ago since I developed swelling in only one leg while o. taxil chemo. No problem with clots before then. I have been stage 4 now for 8.5 years.
Ultrasound did show small clot in lower left leg my oncologist said the same as yours Cancer causes blood chemistry to change I fly yearly to visit my kids or family I do not worry about it
Pam 😀
it’s my pain that is killing me from arthritis. Tylenol does not work. Enjoy every moment you can! Hugs!
Hi Sharon0122, I have been on eliquis since my diagnosis of MBC last August 2, 2023. I had numerous clots from my tumor under my left armpit. Recently I had an exam that scanned all the blood vessels that would have blood clots. I am blood clot free, completely cleared. But as much as I beg to be off of it I am told to stay on it. I am also on high blood pressure meds since my diagnosis also.
I’ve been on eliquis since Dec 22. But now I’m in s much pain, and the only thing you can take is Tylenol or celebrex. Neither of which work to relieve the pain. There are so many other natural remedies to relieve pain and to thin the blood I’m willing to try. Drs don’t seem to care about my pain, just my blood. Thanks for your reply, hugs!
I was given a strong, topical cbd ointment (specialty pharmacy, out of pocket, from a med practitioner licensed to prescribe) when I had ferocious pain from letrozole. Did nothing for me. PM me if you want it.
Hi Tammy, my dr wants to change me from antrozle to letrozole. Probably have the same pain from that drug too. Some days o can hardly lift my arms the pain is so bad. I’m sure it’s from the antrozle, but why now after three years being on it? My arms down to my elbows and my fingers hurt and my thighs have thighs as my arm and finger pain. I stopped taking the eliquis and have been taking turmeric for the past for days and the pain seems to be subsiding. I’m going to try it for a while. I go back for a scan in July and we’ll see if I have any blood clots. I’m sure my oncologist is going to be very upset when he finds out I stopped taking the eliquis. I just can’t bare this pain any longer. Hugs!
You never know about how we respond differently. I switched from letrozole to anastrozole because of pain. Much less pain, but hardly none. Hope you will have the opposite experience.
Odd, too, the way side effects come and go. I also have had side effects start after being on a medication for a long time.
Careful with turmeric supplements. See discussion above in response to a question about multivitamins. My oncology nutritionist said turmeric supplements can harm the liver. On the other hand, you are already ignoring medical advice to stay on eliquis in favor of dealing with your pain. That is a completely legitimate decision. My oncologist favors quality of life over treatment. If it is unbearable, what is the point? I hope your oncologist can support your decision about your life, your body, and help you find a way to deal with these conflicting needs that works.
I was put on eliquis after I developed a blood clot. Not sure what caused the clot but I suspect it was inactivity. They kept me on eliquis for 6 months and then took me off it. I don't know much about it other than I had to stay on the injections for 6 months. Mary
I’ve been on it for a year and a half, I just want to try natural to relieve pain, and with eliquis you can’t take anything for pain.,I’ve been in several opioids fentanyl and morphine. No relief. Thanks for your reply and best to you and hugs!
not sure if this is helpful or not, but you should ask your doc about polymyalgia rheumatica (PMR) - a very common and under appreciated cause of severe shoulder and hip girdle pain in people as they get older. Treatment is oral steroids.
I’m going to dr tomorrow will ask. Thanks and hugs!
You can take acetaminophen (Tylenol) while on blood thinners. I just broke my arm and it helps. I’m on Xarelto.
I wish that helped. Fentynal patches didn’t even rid me of the pain. Dr says it’s from antrozle and he’s switched me to Letrozole not sure that will help. Waiting for it to come from costplusdrugs. They’ve never been so slow. But at Walgreens it was $400 with my insurance for 3 months and $35.00 from costplusdrugs. I’m out of antrozle so won’t take anything except my Ibrance til it comes. Not sure that is the right thing to do. Hugs!
Everolimus and blood clots
