Blood clot in leg - anyone have one?

LRM216

I work as a legal asst. and sit for most of the day. On Weds. a.m. I noticed that my ankles adn feet were puffy. I often have this during hot summer days, when I had my period years ago, after standing for a long time, etc. By the time I got home from work my left ankle and foot had swollen even more than the right - never had that happen before. No pain in leg, no hot spot on calf - no anything. Following day I was to start my first Taxol after completing 4 AC DD every two weeks. I showed my onc my ankles, which overnight the right ankle went back to normal and the left was only slightly swollem. However, she could see that one was larger than the other and told me after chemo she wanted me to see the vascular doctor a block away (he did my power port). I met with the ultra sound gal at the vascular surgeons office and she did a scan of both my legs and told me she did not expect to find anything, but did in my left leg. She found a DVT - deep vein thrombosis. With that she faxed the report immediately to the onc and I went back to onc's office. Put on warfarin 5 mgs. each night and I have to give myself shots for seven days in my tummy - one inch on either side of belly button. Going for a finger prick tomorrow (Sat) to have my RI tested and will have finger pricks at least twice a week. Onc wasn't overly concerned and feels it is a side effect of the AC and said that quite a few people have clot side effects and that I will be scanned again in 3 months and hopefully it will have been absorbed by the wall of the vein, if not, they continue to watch and I will have to stay on warfarin. Of course, I still have to watch for pain in calf, hot spot in calf, or shortness of breath - if any of those - to the emergency room I go. Even though no restrictions have been placed on me, can still work,etc., I am very uptight about this as I have never experienced this before - but then again, I've never had chemo before either.

Anyone have any input for me - anyone else have a clot problem? Thanks for any advice.

Linda

dmc_emmy

Linda-I've had four...
I have what is called, Factor 5 Liden. It's a tendency towards blood clots and it's genetic. Anyway, I had two clots prior to bc, one during chemo, and one after chemo. The one during chemo was caused by an overdose of Neulastin. My former onc, I quess, did not believe me when I said I react strongly to meds. He prescribed to much neulastin and my white blood cells in my leg coagulated and caused a clot.

As for warfarin, kin to coumadin, I did not respond effectively to it. Yet, when I prescribed coumadin, I reacted to it and had to stop. While pregnant, when I had DVT also, I was given heprin for six months. Now, to reduce the chance of a blood clot recurring, I take an aspirin daily (when I remember, I'm really bad about taking my daily doses). The challenge with blood clots are two-fold: one is reculating the meds. If you find that you are bruising easily, call your dr immediately. It may mean that you are taking too high of dose. Two, once you've had a clot, your tendency to have another is increased. It doesn't mean that you WILL have one, it only means that you now need to take precautions.

Precautions such as: don't cross your legs, don't sit on your legs (I still do this and pay for it later), don't be sedendary for long period of times (even sitting on the commode for a long time can cause a clot). While on meds, I'm sure you were told, don't take a multi-vit that contains Vit-K (most vits have K in them, so be careful), don't eat leafy greens, green tea, or another other foods with an anti-oxident in it or Vit K. This is another reason I stopped the blood-thinners, as a vegetarian it limited what was I able to eat (then, take away the soy I started dreaming about soyburgers! That's another story). Also, stay off your leg.

Hints: When I started to walk again on it, I used a cane on the opposite side of the clot, this allowed my weight to be on the cane and not on my leg. I slept with my leg elevated above my heart (it's not the most comfortable, but I made do). Lastly, ask about a compression sock. Your insurance should cover them. They are not very attractive, but they are another precaution. I used these prior to buying some that were a bit more stylish for work. Even now, 3 years since my last clot, I wear compression socks if I am going to be doing a good deal of walking or activity (I buy them at Walmart and they look like dress socks, but just thicker). Keep yourself hydrated. One of the compounded causes of having clots is the lack of sufficient fluids, as well as inactivity.

5 mgs is a considerable amount of blood thinner (but, if I remember correctly, warfarin required a higher dose than coumadin because it's a generic). I would consult with your dr about the dose and be sure that you need to take much. It seems like over-kill if you are also giving yourself shots (I assume heperin), but I'm not a dr. Oftentimes, the drs start the meds high to act quickly on the clot, then cut it back. I think I would ask.

Blood clots are scary, but if they are kept under control and monitored closely they are easily cured.

Hope this helps. Sorry you have to go through this, too.
dmc

CR1954

Linda........
My husband had heart surgery in May. One week later, he developed a DVT in the left leg. They admitted him to the hospital for what was SUPPOSED to be a couple of days, and they started him on Heparin IV.

Unfortunately, he had a reaction to the Heparin, which they said sometimes happens. Long story short....he was hospitalized for 23 days.

His leg is still swollen, but no redness or heat.

He was sent home on Coumadin and they are still trying to adjust his dosage.

The docs did warn him that if he EVER needs any kind of surgery again, to tell the surgeon that he has had a DVT. They said if it has happened once after surgery, it is very probable that it will happen again.

CR

Kristin N

CR1954 said:

Linda........
My husband had heart surgery in May. One week later, he developed a DVT in the left leg. They admitted him to the hospital for what was SUPPOSED to be a couple of days, and they started him on Heparin IV.

Unfortunately, he had a reaction to the Heparin, which they said sometimes happens. Long story short....he was hospitalized for 23 days.

His leg is still swollen, but no redness or heat.

He was sent home on Coumadin and they are still trying to adjust his dosage.

The docs did warn him that if he EVER needs any kind of surgery again, to tell the surgeon that he has had a DVT. They said if it has happened once after surgery, it is very probable that it will happen again.

CR

It is next to impossible to
It is next to impossible to ever get Coumadin adjusted. For some reason, you have to keep changing it all of the time. Not a good thing, but, something that just has to be done. I have never known anyone to just get on it, and, not have to keep changing and readjusting it. Good luck!

jk1952

Kristin N said:

It is next to impossible to
It is next to impossible to ever get Coumadin adjusted. For some reason, you have to keep changing it all of the time. Not a good thing, but, something that just has to be done. I have never known anyone to just get on it, and, not have to keep changing and readjusting it. Good luck!

DMC gave you a lot of great

DMC gave you a lot of great advice. There's really nothing that I can add. I developed blood clots after I had taken Tamoxifen for 6 months. I was out of work for quite a few days and then when I returned, I worked only a couple hours a day and built back up to full time. I actually missed much more work from this than from the lumpectomy and radiation I also had that year.

I do have the Factor 5 Leiden (I call it a mutant gene), and it is my understanding that almost 100% of blood clots are in people who have this. If you don't a blood clot is quite rare.

Joyce

LRM216

Thanks for all the info - it's great.
I am a bit confused though as I had no restrictions placed on me whatsoever about working, walking (onc wants me to)only about the greens and vitamin K. The shots I give myself are called Arixtra (total 7) and I had my first PT1 test today and onc called and told me I had to come in Monday for a finger prick as my count was still a little low. I have had absolutely no pain or reason to even think anything was wrong. Only that the left ankle and foot was more swollen than the right one and that's never happened. She feels it's from the AC since I had the swelling the day before my first Taxol (on Thursday past).

Just want to thank each and every one of you so very much for all the wonderful info and I will ask her more concerning some of what has been told me on Monday. A great weekend to you all as I suffer from my achiness from the Taxol!

Hugs,
Linda

survivorbc09

LRM216 said:

Thanks for all the info - it's great.
I am a bit confused though as I had no restrictions placed on me whatsoever about working, walking (onc wants me to)only about the greens and vitamin K. The shots I give myself are called Arixtra (total 7) and I had my first PT1 test today and onc called and told me I had to come in Monday for a finger prick as my count was still a little low. I have had absolutely no pain or reason to even think anything was wrong. Only that the left ankle and foot was more swollen than the right one and that's never happened. She feels it's from the AC since I had the swelling the day before my first Taxol (on Thursday past).

Just want to thank each and every one of you so very much for all the wonderful info and I will ask her more concerning some of what has been told me on Monday. A great weekend to you all as I suffer from my achiness from the Taxol!

Hugs,
Linda

Just wishing you good luck!
Just wishing you good luck!

LRM216

Survivior -
Thank you! I am more afraid of how I feel after my first Taxol than I am of the blood clot! God, this crap is horrible. I have never felt this bad, not after any of my 4 AC's. This first taxol has done me in completely. Wish I could go into a coma until it's all over!

Linda

Alexis F

LRM216 said:

Survivior -
Thank you! I am more afraid of how I feel after my first Taxol than I am of the blood clot! God, this crap is horrible. I have never felt this bad, not after any of my 4 AC's. This first taxol has done me in completely. Wish I could go into a coma until it's all over!

Linda

So sorry Linda that taxol
So sorry Linda that taxol has hit you so hard. Wouldn't it be nice if everyone could just go in a coma and they could just give you the chemo while asleep. Then wake up and be done. That would be great! Hang in there Linda! We are all supporting you!

Hugs, Lex

jgpaulson

blood clot in leg
Hi Linda,

I am so greteful to have the ability to help you. I have never had a blood clot in my leg but both of my brothers did (deep wein thrombosis), but I had it in my lungs (after failing down some stairs). It is very painful. As hard as it may seem right now you are very lucky to not have the clot go into your lung or heart.

Actually everyday since last week I have been giving myself blood thinning injections also in the stomach. It doesn't hurt that much but somehow it unnerves me. You too.

It is very hard having something like this happen because the doctors have to make a decision as to whether to put you on a blood thinner (warfarin) for the rest of your life (which I always miss). That is hard to take because your blood level (INR) have to be checked regularly. I felt lik a china doll. they told me that I couldn't eat a lot of foods and I would bruise easily. I take these warnings with a grain of salt and eatanything I want and esp. like to drink Calif wine.

You will get through this.

I had a blood clot in my lung. No fun. I have been fighting accepting the fact that I have to be on blood thinners.

It is so wonderful connecting with someone. Please feel free to e-amil me on my rgular e-mail (this one is so confusing). It is JThyme1@aol.com.

Take care and we will talk very soon.

P.S. what is Taxol? and what is 4 AC DD? And would you like to share why you have to have chemo?

Jeanne

Now I have breast cancer and being on blood thinners has complicated things. I go in for a lumpectomy on Thursday and I am scared I will get a blood clot after surgery.

jgpaulson

blood clot in leg
Hi Linda,

I am so greteful to have the ability to help you. I have never had a blood clot in my leg but both of my brothers did (deep wein thrombosis), but I had it in my lungs (after failing down some stairs). It is very painful. As hard as it may seem right now you are very lucky to not have the clot go into your lung or heart.

Actually everyday since last week I have been giving myself blood thinning injections also in the stomach. It doesn't hurt that much but somehow it unnerves me. You too.

It is very hard having something like this happen because the doctors have to make a decision as to whether to put you on a blood thinner (warfarin) for the rest of your life (which I always miss). That is hard to take because your blood level (INR) have to be checked regularly. I felt lik a china doll. they told me that I couldn't eat a lot of foods and I would bruise easily. I take these warnings with a grain of salt and eatanything I want and esp. like to drink Calif wine.

You will get through this.

I had a blood clot in my lung. No fun. I have been fighting accepting the fact that I have to be on blood thinners.

It is so wonderful connecting with someone. Please feel free to e-amil me on my rgular e-mail (this one is so confusing). It is JThyme1@aol.com.

Take care and we will talk very soon.

P.S. what is Taxol? and what is 4 AC DD? And would you like to share why you have to have chemo?

Jeanne

Now I have breast cancer and being on blood thinners has complicated things. I go in for a lumpectomy on Thursday and I am scared I will get a blood clot after surgery.

jgpaulson

blood clot in leg
Hi Linda,

I am so greteful to have the ability to help you. I have never had a blood clot in my leg but both of my brothers did (deep wein thrombosis), but I had it in my lungs (after failing down some stairs). It is very painful. As hard as it may seem right now you are very lucky to not have the clot go into your lung or heart.

Actually everyday since last week I have been giving myself blood thinning injections also in the stomach. It doesn't hurt that much but somehow it unnerves me. You too.

It is very hard having something like this happen because the doctors have to make a decision as to whether to put you on a blood thinner (warfarin) for the rest of your life (which I always miss). That is hard to take because your blood level (INR) have to be checked regularly. I felt lik a china doll. they told me that I couldn't eat a lot of foods and I would bruise easily. I take these warnings with a grain of salt and eatanything I want and esp. like to drink Calif wine.

You will get through this.

I had a blood clot in my lung. No fun. I have been fighting accepting the fact that I have to be on blood thinners.

It is so wonderful connecting with someone. Please feel free to e-amil me on my rgular e-mail (this one is so confusing). It is JThyme1@aol.com.

Take care and we will talk very soon.

P.S. what is Taxol? and what is 4 AC DD? And would you like to share why you have to have chemo?

Jeanne

Now I have breast cancer and being on blood thinners has complicated things. I go in for a lumpectomy on Thursday and I am scared I will get a blood clot after surgery.

jgpaulson

blood clot in leg
Hi Linda,

I am so greteful to have the ability to help you. I have never had a blood clot in my leg but both of my brothers did (deep wein thrombosis), but I had it in my lungs (after failing down some stairs). It is very painful. As hard as it may seem right now you are very lucky to not have the clot go into your lung or heart.

Actually everyday since last week I have been giving myself blood thinning injections also in the stomach. It doesn't hurt that much but somehow it unnerves me. You too.

It is very hard having something like this happen because the doctors have to make a decision as to whether to put you on a blood thinner (warfarin) for the rest of your life (which I always miss). That is hard to take because your blood level (INR) have to be checked regularly. I felt lik a china doll. they told me that I couldn't eat a lot of foods and I would bruise easily. I take these warnings with a grain of salt and eatanything I want and esp. like to drink Calif wine.

You will get through this.

I had a blood clot in my lung. No fun. I have been fighting accepting the fact that I have to be on blood thinners.

It is so wonderful connecting with someone. Please feel free to e-amil me on my rgular e-mail (this one is so confusing). It is JThyme1@aol.com.

Take care and we will talk very soon.

P.S. what is Taxol? and what is 4 AC DD? And would you like to share why you have to have chemo?

Jeanne

Now I have breast cancer and being on blood thinners has complicated things. I go in for a lumpectomy on Thursday and I am scared I will get a blood clot after surgery.

DianeBC

LRM216 said:

Survivior -
Thank you! I am more afraid of how I feel after my first Taxol than I am of the blood clot! God, this crap is horrible. I have never felt this bad, not after any of my 4 AC's. This first taxol has done me in completely. Wish I could go into a coma until it's all over!

Linda

Linda, just wishing you good
Linda, just wishing you good luck! Hope it goes better for you!

Post and let us know how you do!

Diane