Dad (NSCLC adeno stage IV with SVC syndrome - stable disease) has been in hospital since Friday because they finally found the blood clot I suspected. He has a 4-5 inch long blood clot just outside of his heart above the right atrium extending into the collarbone area. They cannot do anything surgically and has been on a heparin drip since Saturday. The hospital is asking him to make a decision today on Lovenox, Coumadin or Warfarin. My research suggests Lovenox is best for cancer and it treats the clot still. The doctors at hospital have scared my dad because they told him Lovenox is not reversible, which I know. And that Coumadin is much cheaper. He is to start radiation as well as hopefully continue Alimta maintenance eventually. Which is the better drug for clots? Any experiences, info would greatly help! Thank you!!
Lovenox or Coumadin?? Please help - Lung Cancer Support
Lovenox or Coumadin?? Please help
My husband had inoperable lung cancer but he did radiation and chemo. During his treatment he also developed lung clots in the "good" lung. While in the hospital they did the Lovenox but he was sent home on Xarelto in which he did well. He currently is now on Opdivo for his cancer. I pray which ever your dad chooses he does well.
Thank you for your help! Many prayers for your husband. I hope Opdivo is a miracle for him!
Hi Lisa
My mother does not have lung cancer, but she has end stage COPD and her doc uses warfarin to prevent blood clots. It is a difficult situation and you might want to talk to the oncologist about the need to keep having blood tests with warfarin to make sure the blood thickness is in balance. She goes for weekly testing and they are constantly changing the dose. It was the same with coumadin. I don't know anything about Lovenox - it has never been offered to her. It is my understanding that it is not uncommon to constantly have blood tests for warfarin and coumadin. Hope this helps a bit.
We’ve been trying to get in touch with his oncologist for several days now and absolutely no return calls. We’re in Orlando and he goes to Tampa for treatment. We ended up choosing Lovenox but insurance won’t approve the brand so we went with generic.
Hi Lisa- I took Lovenox injections when I was pregnant, to.prevent clots. There are a free things I would like to share. 1) it is long acting, so if your Dad needs major surgery he could have a bleeding event that could be quite dangerous if not life threatening. Heparin is shorter acting. 2) Lovenox caused severe bruising at the injection site and Heparin did not. 3) Heparin is short acting. 4) I did not develop any blood clots while on Lovenox for 9 months and I am not aware of any side effects. It's been 12 years ago. 5) lovenox is costly and my insurance did cover it. Depending on the insurance, you doctor can determine and report to the carrier if there is medical necessity for your Dad to take it. If it isnt coveted contact the manufacturer because they can provide deep discounts sometimes or may offer vouchers. Always check out GoodRx.com for the best pricing on any drugs.
I wish you and your Daf well.
I'm familiar with these drugs so I hope this helps. I was diagnosed with g 4 nsc adenocancer , lung cancer, in Dec 2017. Doing pretty well considering. 2 pet scans show shrinkage of a small lung tumor, 1.5 cm, and cancer to the spine has decreased. FYI warfarin has been around for many decades and is the generic name for Coumadin. I was on warfarin for years due to transient ischemic attacks, mini strokes, due to a thick blood condition called factor 5 Leiden. This is a hereditarily bad jean from some relative in Sweden 40,000 years ago. You can have 1 copy of this jean from 1 parent or 2 if both parents carry it. (I have 1and this condition is called heterozygous.) So warfarin is dirt cheap and works for many people but I doubt it will work for you. FYI I am not an MD, I am a retired optometrist. So after the lung diagnosis the Veterans hospital where I receive my cancer care decided to stop my warfarin entirely and switch to twice daily lovenox shots. I don't enjoy "shooting up", but if that is keeping me healthy I will do it. The oncologist said my type of cancer throws off a bunch of blood clots. Also warfarin stays in your system a few days after stopping it so if the patient needed emergency surgery for some reason it would be bad news for the warfarin patient. Stopping and starting the lovenox is simple and quick so thats another reason to be on lovenox. I'm hoping to maybe be switched to Xarelto eventually. A drawback to lovenox is the expense. Mine is 100 % paid by the VA but the civilians charge about $ 100 a shot. If you have wonderful insurance you will still have to pay a bundle to be on it.
Thank you for your help! I am also so happy to see you’re doing well on treatment! We can’t get in touch with his oncologist so we made the choice for Lovenox and after reading these replies, I feel it’s the correct choice. Today we found out insurance won’t pay for brand Lovenox but will pay for generic. We decided to go for generic but I’m wondering if it’s the same thing or will work the same. I know some people don’t do well with warfarin but do well with Coumadin so no idea if brand Lovenox and generic Lovenox might be a bit different as well. You are right on being expensive - I can’t believe how much!!! All my best to you - sounds like you’re on the right track!
I had a Pulmonary embolism at diagnosis (Stage IV NSCLC) and was put on Heparin while in the hospital. At discharge they switched me to twice daily Lovenox injections. I didn't like them, but adjusted. After a few months I then asked about Xarelto (pill form)and then switched ti that abd have been on it ever since. For me its been the best option.
Good luck
Lisa
Thank you for the info and help! We went with Lovenox but insurance would only approve generic form, so hoping it’s just as good as brand but really not sure. Xarelto was never offered but I am now going to be looking that up and checking into that. Maybe it’s an option down the road for a pill! All my best to you.
Lisa,
I should note that when I was on Lovenox it was the Generic Brand, my health insurance typically covers generic meds and ONLY approves Brand Name if there are not generics available, that's pretty common with mos plans.
I also was NOT originally offered Xarelto, that came later after I had been on Lovenox for a few months. To be honest, I had no idea there even were so many options and this all happened when I was diagnosed and everything was quite overwhelming.
One other benefit of switching to the Xarleto is that I seem to "bleed and bruise" less than I did while on Lovenox and when I have had to stop it for a procedure it's for only a day or two.
Xarelto has not "generic/currently" and is very expensive, my co pay is $100, but I'm sure that varies by insurer.
I found out about it after see an AD on TV, and that's when I asked my team IF I could switch, that ws several months later and after they did approve it, but wanted to be sure it would be covered by my insurance and affordable.
I also later found out that Janssen (the manufacturer) offers a program and if eligible, it brings the co pay down to $10 a huge savings. NOTE: There are very specific insurance requirements -- and it's OPEN only to patient's who have "Commercial or Private Insurance". For all the details, please check out the link below. - It's the Janssen Care Path -- xarelto-us.com/xarelto-pati... - They have a toll free number you can call for more details.
I wish you well and hope maybe in time he too might be able to try Xarelto, if he would prefer it and his insurance covers it.
Lisa
Thank you so much, Lisa! Great information and so very helpful! I feel much better about him being on the generic now. The brand Lovenox would be a co-pay of $2,000 😳 and that’s if insurance approved a formulary exception to allow him to get brand. And then he could appeal the cost to try to get it down further, but I think staying with generic is going to be okay. I trust the opinions of everyone here and it’s comforting to see others doing just fine on generic Lovenox! I’m pretty sure we will be discussing Xarelto with the doctor eventually so I appreciate all the info and help regarding that as well! I make a list of questions and info for doctor visits and this is on it now. All my best!
Lisa,
My wife (also Lisa) had a clot discovered in her jugular vein from her ear to her collarbone last December. This led to the diagnosis of Stage IVb NSCLC adenocarcinoma. (Quite a diagnosis for a healthy 55 yr. old non-smoker!) She has been on Gilotrif with Lovenox injections twice daily since then. They recently gave her the option of coumadin (or something similar) instead of the injections. She chose to stay on the injections due to the fact that there is a greater chance of internal bleeding with the coumadin-type products. She bruises very easily, but is used to the injection regime. The treatment seems to be working, although nothing other than radiation will help her brain lesions. Hope this helps...and keep on praying!
Ohh, your post makes me feel so much better in our choice! And it sounds like your wife’s clot is as large as his (5”). Dad almost went with Coumadin because they were pushing it on him and in the end Lovenox was chosen by us. Insurance will not pay for brand Lovenox so we went with generic, which they will pay. Is your wife on brand name? I’m hoping generic is just as good as brand Lovenox but I don’t know. Also, has your wife’s clot gotten smaller and is it still there? His clot is just outside his heart extending up around the collarbone so we don’t know if Lovenox will break it up eventually or if it stays forever. He is still in hospital on IV heparin since last Friday. Did your wife have any swelling or SOB with the clot? Did it get better? My dad has so much swelling in both arms and face and such bad shortness of breath that he can’t walk to the bathroom without sitting. He is due for Alimta maintenance in 2 weeks but I don’t know if they will continue the chemo.
Thank you again for your help! Many prayers for your wife, Lisa! Never give up hope!
Lisa,
I think you made the right decision. Lisa's initial month was on name brand Lovenox. She's been on generic since then. It works just as well--the syringes are almost identical. Her body has taken care of the clot and the Lovenox has prevented new ones. The bruising from IV's, bumping her leg, etc., is the most annoying side effect; but no swelling. She is fatigued more frequently, but that may be due to the Gilotrif. Tell your dad to hang in there--we always have hope.
Lisa (and others in the forum),
Regarding the bleeding problems with oral anti-coagulants: Xarelto is the 'problem child' when it comes to internal bleeding, not coumadin, etc. My brother is an Emergency Room physician in Minneapolis. He said one of their greatest fears is a Xarelto patient with bleeding. They can slow the bleeding, but are not able to stop it. The drug company has no solution either.
So comforting to know she did just as well on generic as brand! This drug is so important with a 5” clot just outside his heart that I wondered if generic would be okay. I feel better about it now. How long did it take for the clot to go away? He just got released from the hospital earlier today. He is still very swollen in face and arms and still has SOB where he can’t walk to bathroom (he was walking 2 miles every morning before this). He has the SVC as well which contributed to his clot. It’s just another obstacle we will get through. Oh and he bruised very easily before this so I imagine he will bruise so much more now. How is your wife doing now? Prayers for you both and thank you for the help!
Lisa,
She just returned home after another brain MRI, which revealed no lesions. They can't even find the one that was there last month! After a board of specialists discussed the thickened area in her chest near her heart, they have concluded that the clot originally extended from near her ear, all the way to the superior vena cava near her heart. It's been 7 months on the Lovenox, which they just decreased to one injection/day. I can't say the clot is completely gone, but much improved. She's actually starting to play tennis and golf again. Keep the faith! My prayers continue for your father, you and your family.
That is the best news!! I can imagine the relief you both feel after that MRI! May it keep getting better and better for her! 🙏
Can I ask - a board of specialists, was that in the hospital or did she have certain doctors she needed for the blood clot? Once my dad was sent home from the hospital he has no one monitoring it. They put him on lovenox in the hospital and then just sent him into the wind with no further follow up care or instructions. His oncologist is in Tampa and he’s in Orlando so it’s not real close. We’re waiting on what to do about radiation for his SVC syndrome as the tumor in his lung is pressing on the right atrium of his heart and superior vena cava which allowed the blood to pool and cause this 5” blood clot outside of it. He is remaining positive but pretty bummed since leaving the hospital because his SOB is still very bad and walking 10 feet is hard for him since the blood clot, as well as his arms are still very swollen from it. I want him to establish with a cardiologist but the hospital kept saying this wasn’t a heart issue because the clot was just outside the heart so I’m just not sure who monitors this clot or what we do from here besides the 2x a day lovenox. Did your wife have a vascular doctor monitoring her clot? He is set for his Alimta maintenance infusion this coming Friday but he won’t get to see his oncologist that day. I’m afraid of the chemo with this clot and his breathing and swelling being so bad.
Thank you again for the info! I have not found anyone who has had a clot as large as my dad’s so I appreciate you taking the time to tell me about your wife’s experience.
Lisa,
The review board is part of the hospital team. She is being treated at the Medical College of Wisconsin, which is a teaching hospital 2 1/2 hours away. The only physicians that we see on a regular basis (monthly or more) are an oncologist and a radiology oncologist. She has had a consult with a pulmonary specialist, but only briefly. We also went to MD Anderson Cancer Center in Houston for a second opinion in month 3, at the suggestion of a cancer surgeon. The full body CT scan is the only way they monitor the clot. Otherwise, she spent the first few months on the couch and slowly improved. We are very thankful and feel blessed that she was able to celebrate her 56th birthday and be at our son's wedding this summer--both of which they couldn't guarantee last December. Tell your dad to hang in there...your body just needs time to heal itself. Prayers continue to you and your family.
Oh gotcha! My dad is being treated at Moffitt in Tampa and we’re in Orlando so we drive back and forth. The hospital isn’t monitoring him anymore once they discharged him, so essentially no one is monitoring his clot now. He won’t see his oncologist until middle of August. Hopefully we will find out more then. Still waiting on if he can even have radiation with this large clot. Not sure it’s safe but maybe so. My dad is discouraged about the SOB and stuck to the couch so I will be telling him about your wife and that she was also stuck to the couch, so it seems normal for the clot. I know that will help him to hear because it’s scaring him that he can’t do the things he was just doing right before the clot. He’s 64. What a blessing for your wife!! I will keep you both in my prayers and I’m so very happy for her. This cancer is horrible but it can be beat! I will keep an eye out for any updates on your wife.
I forgot the dietary restrictions on people taking warfarin. This drug requires you to be in a zone of blood thickness called the "I and R". it's usually supposed to be between 2.0 and 3.0. To get this magic number you have to have regular blood tests which are a hassle to get right. Food and booze affects the number. Basically you can't take dark green veggies like spinach or broccoli because they have too much vitamin K. Vit K thickens the blood. Your really not supposed to drink alcohol because that thins the blood. Drink too much and you'll die from a brain hemorrhage , the I&r will be greater than 3. Eat too much broccoli and you'll have a blood clot. Stroke, pulmonary embolism or leg clot. Some people can never get the i and r correct. I worked for a lady who went "clunk" head down on her desk with a severe headache and died shortly in the hospital from a brain hemorrhage . So you'll see ads for xarelto and whatnot that are very expensive but don' require blood monitoring or have food restrictions.
Thank you so much for the info! You definitely confirmed that we made the correct decision in denying Coumadin! That’s too much added stress for my dad right now to worry about and so scary about the complications, so I feel Lovenox is the best choice we could have made! All my best - keep shrinking those tumors!!
