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Oh Crap - I have a Blood Clot


Patti B

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Well - I have been complaining of my feet, especially my left one swelling horrendously for about 8 weeks now. Have shown my feet to the doc, the Pa, everyone who would look. My left one swelled so bad and turned blood red up to about where a sock line would be and then it peels like a sunburn. They keep telling me its a side effect from Alimta. Even told me that more and more people are on Alimta for longer times now and they are getting these complaints all the time. Now, a very smart and wonderful lady from on this forum (yeah, you Sue) kept pushing me to ask about blood clots. And I did. I even called them twice and said, hey, today is really bad for my foot, should I come in and let you see it?? And of course, they say no, its from the Alimta.

So over the weekend, a lump popped out on my leg right above the red line. And it hurts like the dickens if you touch it Thank god I didn't listen to my husband who said he couldn't see it - how can you not see this big lump???? Anyway, when I went for chemo yesterday, I pushed them AGAIN and showed them the lump. So they decided to send me today for an ultrasound. Now, they were still saying its from the chemo but this is just because there is something new going on.

So off I go to get the ultrasound and.......bingo.........a blood clot right on the lump area!!!!!! So the radiologist comes in and says calf veins are tricky when they have clots because they are so narrow, but I am getting good blood flow around it (its not totally blocking the vein, I guess) and the blood flow farther up my leg is good. So she doesn't know if they will admit me or just put me on coumadin. She called my doctor at 3:00pm who told them to send me home and I should await his call. OK - its 4:15 now - can you call already??

The moral of this story is ------ always PUSH and BUG them if you think something is wrong AND - DON'T listen to all this "its a side effect from chemo" approach. Sure, there are tons of side effects of chemo but sometimes I think thats the easy way out and if something is a side effect of anything else, you need to PUSH them to check it out!!!!

Thank you all for letting me rant and rave!!!!!!

Thanks - Patti B.

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Patti, I'm so sorry about this new development. Actually, it's not new, is it? Well, new to your health care team. How happy are you with these folks?

Hope this gets taken care of quickly. Also, hope that your doctor calls you back soon. That's so annoying, waiting for a dr. to call. Is this dr. part of your chemo team or somebody else? Are you happy with him/her?

Let me know how this turns out.

Muriel

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Well, heres my update and I am not happy about this at all.

The radiologist called Dr. M. at 3:00 and was told to discharge me home and that he would call me with instructions. So home I go and wait. At 4:55 pm I call his office and they tell me he works til 5 pm and makes his calls after 5pm. OK, so I continue to wait. It gets to be 7:15 so I call the oncology resident on call to see what is going on. The lump in my leg was already hurting and they were pushing so hard with that scope that now it really hurts and of course, you start to think, maybe they pushed it around and now its moving. So the resident calls me back and says that the clot is below the knee and small so she is doing nothing tonight. I should call Dr. M. in the morning and see when he wants me to have the ultrasound repeated, maybe in a week or two to see if it has grown or moved. Thats it!!! No meds, no nothing. I WANT SOME CLOT BUSTERS!!

She did end the conversation with telling me, "now, if you begin to experience terrible pain or have shortness of breath, please call 911 immediately!!"" Oy, vey, what am I dealing with here?? :roll::roll:

Has anyone gone through this??? Does this sound like reasonable treatment for a clot of any kind??

I am angry that I was treated like this especially since I have been complaining about my foot and leg for weeks and weeks. Guess I have to report this to someone. Problem is, my doc is the head of lung oncology at the clinic so I guess I have to report him to him!!! LOL!!

So, anyone with clot info please let me know. Maybe I am just overreacting (and it wouldn't be the first time, either)

Thanks, everyone.

Hugs - Patti B.

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Hi Patti,

So glad you had the tests done and found out what was wrong. Sorry you are having to wait. Take care of yourself. I will make this short since I had pm'ed back and forth with you, but I sure hope others will come along and tell you their experiences with blood clots in the leg and what done to treat them. Above all , follow doctor's orders and put the feet up. Hopefully, you can get more information from the doctor in the morning. Don't blame ya for wanting the "clot busters".. lol Take care of yourself.

Hugs,

Sue

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Hi, Patti.

Sorry about the blood clot, but very glad it was found!

I had a pulmonary embolism a year ago last May. They hospitalized me, injected me with heparin (blood thinner) immediately, and I've been self-injecting Lovenox daily ever since.

Even though the clot was found in a major vein in my left lung (about 2" from my heart), the docs told me it had probably "migrated" there from one of my legs. I also learned at that time that cancer patients are 15% more likely to suffer from blood clots than the general population.

I have no idea what is "standard procedure" for clots that are found in the leg (as vs. lung), but I would have thought they would start you on a blood thinner before sending you home?

I wish I knew more, but there are probably others here that have had blood clots in their legs, too, who will be able to provide you with more information.

In the meantime, keep that leg up! :D

Carole

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I am angry just reading this -- you tell them you haven't come this far to be taken out by a blood clot. I was worried you might have one when you mentioned it in chat. Let us know what happens-- hang in there.

Rochelle

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Patti-- So sorry to hear that and WOW on all the BS with your doctor. Prayers for ASAP relief and resolve-- no one should have to go through all this. No experience on having a blood clot but when they thought I had one did have a test so again don't get all the run around. And your right always push and don't take no for an answer. Keep us posted please. Rich

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Hi Patti,

To do nothing in regards to a blood clot would seem a little weird. I kept getting told my breathlessness was due to disease progression, finally after 8 weeks they diagnosed blood clots in my lungs and I also had them in my legs. Hurt like buggery in my legs too. I am now on daily Clexane injections and the pain in my leg has gone and my breathing has improved incredibly. I would not shut up on this one, keep bugging them. I had to and finally something was done.

All the best,

Sharon

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Patti - GRRR! This makes me so mad. Why is it that they dismiss people in such a fashion? I certainly wouldn't let this go. I have very little experience/knowledge about clots; however, even with my inexperience this doesn't seem right to just leave it. Especially since you are having pain and swelling. My niece has been given injections in hospital the two times she has had clots in her legs - that is basically the extent of my experience with blood clots.

Time to get your gloves on girlfriend and fight for some more concrete answers on this issue. Like Ned said - 911 or a visit to an Emergency department is the route I would go if I wasn't satisfied with their answers. What especially annoys me is the comment that we want to see if it has grown or moved - even the inexperienced know that clots moving is not a good thing!

Let us know how it goes with Dr. M!

Always in your corner,

Linda

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OMG Patti, this sure has me :twisted::twisted::twisted:

Hell, after my open heart surgery in Jan, they sent me HOME with a blood clot from the hospital knowing I had it! :shock: This medical world is getting real scary!!!!!!! :shock::?

I did get very SOB and I did end up back in the hospital 2 days after they released me. OY VEY is RIGHT!! My blood clot was in my upper chest area. :shock::shock::shock: HELLO, I only have ONE LUNG!!

Nothing to monkey around with is what I say!

(((((((((((((((PATTI)))))))))))))))))

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Hi All-

First, thanks for al the good wishes and information. This is my latest in this saga:

I called my doc at 8:04 am and spoke to his secretary who said he wasn't in yet and explained to her I was very upset that he never called me last night and that the bimbo resident said maybe have another ultrasound in a week or two to see if it had moved or not :shock: Of course, my dark perverted humor took over and I told her hopefully my autopsy wouldn't show that it had moved!!!!!!!!! So he calls me at 9:30 apologizing for not calling last night with some lame excuse that the only thing he could have told me last night would have been to go to the ER and I would have been there all night. I told him he could have told me I will call you in the morning and I explained to him that my dad DIED of a blood clot to his heart and that I spent all night waking myself up to see if I was alive or not :lol: . So he apologizes again and tells me my PA Tara will call me in a few minutes.

Tara calls and explains to me that I have to go into the Clinic and have lessons on how to give myself twice daily shots in my STOMACH of Lovenox. That is a fast-acting blood thinner. In a couple of weeks they will start me on Coumadin but that takes a while to reach a therapeutic level in you body. If I should get any more clots while on Coumadin they will put me back on Lovenox and even then, should I get any more (which hopefully is unlikely) they can go up through your groin and put a mesh filter in your abdomen which would filter out clots before they can get to your heart or lung. I asked her if this would mean that they are taking me off Alimta which I really don't want since it is working and the next chemo may not. They still feel that the blood clot is NOT related to Alimta nor is it related to my swollen and red feet, since the lump in my leg and the clot are higher than the affected areas. She said that in a way I was lucky because I found the lump while applying lotion to my peeling feet. She further explained that when you have cancer, your body is put into a coagulant state like when a woman is on birth control pills or hormone replacement and that 50% of all cancer patients will develop a blood clot at some time.

So......I picked up my Lovenox from the drug store - 21 days supply and I only pay a 20% co-pay and it was $200.00!!! I went to Cleveland Clinic and met with the nurse who showed me how to give myself the shots. I even gave myself the first one!!! The needle didn't hurt at all going in - guess its all that extra meat I have hanging around my stomach!! :shock::shock:

Thanks again to everyone - love ya all!!

Patti B.

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Patti!!!!!!!!!!!!!!!!

UGH!! What a mess. I am gld you have the personality that you do. LOL Thank-God you got the lovenox. and i get you on how much that crap costs. I can't even beging to tell you the stories about people complaing how expensive it was when I worked at the cancer center. I can only imagine how much it is now. Please take care of your self. and think happy thoughts, like those of a dog , a preist, a boat and a guy named "richard" oh and dont forget Bruce too. LOL

Shelli

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Oh Patti, Don't you just love that LOVENOX? Mine cost us $250.00 out of pocket. :shock: I had to do that too. I'm just glad you got to the bottom of this, but we shouldn't have to go through all this to get the end results. It's not fair!

((((((((((((PATTI))))))))))))))

Hang in there my friend!

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Hi, Patti.

I've been injecting myself with Lovenox in the stomach daily for over a year now (ever since my pulmonary embolism).

My oncologist was going to move me to coumadin (warfarin) but wanted to wait until I "stabilized," and just hasn't wanted to rock that boat yet. :D

Sorry you're having to go through this, but my sick sense of humor just LOVES your autopsy shot! :lol:

Carole

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Hi Patti

Was without internet all day and I was having a fit worrying about you. I'm so glad you are now on the Lovenox... What a name!!! Hope it won't be too bad for you. So far , everyone says it's not that bad. Guess the idea just sounds worse than it is... the main thing is I hope it busts any clots and lets you get some peace of mind. You take care of yourself. Never lose that marvelous sense of humor and fighting spirit.

Hugs,

Sue

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Patti B

Not sure what kind of medicine your doctors pratice but what they have done would have scared me. I have also had a blood clot in my right foot. After my wife pushed me to the hospital and they put a pulse sensor device on my foot which told them that I had a clot and then rushed me in to surgery to place a stent/filter in the main artery coming back up my leg. If the clot would have come loose it would be thinned by the filter and not go to my heart or lungs. Then I was placed on the heparin. Do you realize that the clot could cause gangrene or even killed you. I hate to upset you but I have been through this and almost lost my toes. Dont ever give in. Now that your better make sure you walk alot to keep the blood circulation going. Please dont be upset with me but make more noise with your doctor.

Don

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Don-

I certainly appreciate your concern and your info. I am on Lovenox shots 2 x day and also oral Coumadin. They told me blood clots can take up to 6 weeks to be absorbed by the body.

What makes me mad is that I have to go Mon, Wed Friday of this week to get my coumadin level taken. Monday, the level was too low so they increased it. I went this morning for my blood level and didn't realize until ten minutes after they closed that they NEVER called me to say what it was. So if it should have been increased again, it wasn't. And that may mean another day or two on these shots. I will be calling them first thing in the morning and giving them a piece of my mind!!

Thanks again for your info - I truly do appreciate it.

Hugs - Patti B.

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Yes, Shell I did and believe it or not, they tried to turn it on me. Told me I should have called their emergency after hours number to get the information - I told them I didn't think they would consider my blood level an emergency and she said "oh, yes, until we get your levels under control, we are treating this like an emergency". So then why the hell didn't you call me, lady.

Frustrated!!!!!!!!!!!!! Bottom line is, my level is still not up much so they increased my dose which they could have LAST NIGHT had they done what they were supposed to do. It would be nice to be off the shots as soon as possible - my stomach is beginning to look like a very used dart board!!! LOL.

Hugs - Patti B.

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Oh Patti!

How frustrating! I think you already mentioned that you have no option to change md's, right. Man.... what is it with inconsiderate people in Drs offices. :roll: They all need a slap upside the face. :twisted:

I hope that you get all that undercontol soon.

Shelli

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