Blood Clots - S**T!

KareGiver
KareGiver Member Posts: 301 Member
in Head and Neck Cancer #1
My husband, halfway through treatment (38 rads, 3 Cisplatin) All going really pretty well...then BAM, a blood clot from the calf to both lungs. He now has a permanent vena cava filter and is struggling with breathing. On Lovenox injections twice a day indefinitely. He is nervous about his radiation treatment on Monday with the mouthguard, etc. Clearly on the latter half downhill slide with this "bump" in the road. Has anyone experienced this in their treatment? Just looking for some encouragement. Many thanks.

Comments

  • KareGiver
    KareGiver Member Posts: 301 Member
    #2
    Honestly...
    Just nervous about EVERYTHING!
  • adventurebob
    adventurebob Member Posts: 691
    #3
    eesh
    Sorry to read that. I did get a blood clot in my arm and had to give myself the Lovenox shots daily for a couple weeks. Pretty strange at first and then became as normal as that crazy tube. I wish you guys didn't have to deal with that. Is your husband nervous about breathing with the mouthguard in? The techs should be able to cut out his mask over his nose to allow him to breath better. You'll probably need to ask though. They'll do whatever they can to get him through treatment. Let us know how it goes on Monday.

    Bob
  • KareGiver
    KareGiver Member Posts: 301 Member
    #4
    adventurebob said:

    eesh
    Sorry to read that. I did get a blood clot in my arm and had to give myself the Lovenox shots daily for a couple weeks. Pretty strange at first and then became as normal as that crazy tube. I wish you guys didn't have to deal with that. Is your husband nervous about breathing with the mouthguard in? The techs should be able to cut out his mask over his nose to allow him to breath better. You'll probably need to ask though. They'll do whatever they can to get him through treatment. Let us know how it goes on Monday.

    Bob

    yes
    Bob, he is nervous about that. I will relay your advice. How long did it take for your blood clot to "dissolve?" Thanks for your response!
  • Jamie_Ann
    Jamie_Ann Member Posts: 35
    #5
    No advice, but prayers
    Saying a few extra prayers for your husband tonight.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Thoughts and Prayers
    Same here, just believe as some guy on here always says (LOL, KCASS)....

    The positive can always be just around the corner, keep looking for it.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Skiffin16 said:

    Thoughts and Prayers
    Same here, just believe as some guy on here always says (LOL, KCASS)....

    The positive can always be just around the corner, keep looking for it.

    Best,
    John

    Blood Clots
    This is something we all fear and deal with day by day while in treatment and I believe we all get them just some are bigger than others. I do hope and pray that the medicine will work and get him better soon.

    My prayers are with you both.
    Hondo
  • buzz99
    buzz99 Member Posts: 404
    #8
    Blood clots
    Buzz had blood clots in both legs and his Oncologist wanted him on Lovenox for 6 months. I gave him two shots a day for 3 months. Then he had some bleeding so was taken off the Lovenox. A doppler study of his legs showed the clots to be gone. So it took 3 months but I am sure that varies with the individual and the size of the clots. Karen
  • DrMary
    DrMary Member Posts: 531 Member
    #9
    buzz99 said:

    Blood clots
    Buzz had blood clots in both legs and his Oncologist wanted him on Lovenox for 6 months. I gave him two shots a day for 3 months. Then he had some bleeding so was taken off the Lovenox. A doppler study of his legs showed the clots to be gone. So it took 3 months but I am sure that varies with the individual and the size of the clots. Karen

    Leg and both lungs
    Doug developed clots in his leg, right where he had some old nerve damage, so they went untreated for a few weeks. The PT folks insisted on a dopplar and sent him to the ER - PE's in both lungs. He'd had no trouble breathing and actually played hockey the night before.

    The symptoms of the leg clots faded fast - a week or so, I think. We tried to make the move to warfarin (coumadin) but his diet was never consistent enough to get a stable INR (time to clot). Since he insisted on playing hockey as soon as he could, I wanted to keep him on the Lovenox rather than the warfarin (Lovenox takes only a day to clear your system, while warfarin takes about a week, so if you need surgery or are doing something else that could cause severe bleeding - like hockey - Lovenox is better).

    They like to keep you on something for clots until 6 months after your last chemo - we didn't make this; I think we were closer to 4 months.

    The clots came about a week after we'd postponed chemo because of low WBC - we know that "oh God, what next" feeling very well. It sucks, but it might be the last hump you have to get over. Doug's doctor pointed out that he'd had the "worst of the worst" in terms of side-effects, but then the "best of the best" outcomes. Keep your spirits up - things will get better.
  • KareGiver
    KareGiver Member Posts: 301 Member
    #10
    DrMary said:

    Leg and both lungs
    Doug developed clots in his leg, right where he had some old nerve damage, so they went untreated for a few weeks. The PT folks insisted on a dopplar and sent him to the ER - PE's in both lungs. He'd had no trouble breathing and actually played hockey the night before.

    The symptoms of the leg clots faded fast - a week or so, I think. We tried to make the move to warfarin (coumadin) but his diet was never consistent enough to get a stable INR (time to clot). Since he insisted on playing hockey as soon as he could, I wanted to keep him on the Lovenox rather than the warfarin (Lovenox takes only a day to clear your system, while warfarin takes about a week, so if you need surgery or are doing something else that could cause severe bleeding - like hockey - Lovenox is better).

    They like to keep you on something for clots until 6 months after your last chemo - we didn't make this; I think we were closer to 4 months.

    The clots came about a week after we'd postponed chemo because of low WBC - we know that "oh God, what next" feeling very well. It sucks, but it might be the last hump you have to get over. Doug's doctor pointed out that he'd had the "worst of the worst" in terms of side-effects, but then the "best of the best" outcomes. Keep your spirits up - things will get better.

    The best...
    All of you. Thank you for your responses! Dr. Mary, if Doug is playing hockey, then a walk around the block IS possible! Truly, the encouragement is appreciated.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #11
    CLOT TREATMENT
    I too had clots in both of my calves. I did the Lovenox injections every day for 90 days and was cleared once I had the Doppler.

    I chose the Lovenox injection over the Coumadin pills as the Lovenox is much easier to maintain the proper dose level.

    Best of luck

    Mike
  • arndog64
    arndog64 Member Posts: 537
    #12
    luv4lacrosse said:

    CLOT TREATMENT
    I too had clots in both of my calves. I did the Lovenox injections every day for 90 days and was cleared once I had the Doppler.

    I chose the Lovenox injection over the Coumadin pills as the Lovenox is much easier to maintain the proper dose level.

    Best of luck

    Mike

    I did not know this was a
    I did not know this was a side effect. Thank you for the information. I will keep my eye out.
  • hawk711
    hawk711 Member Posts: 566
    #13
    arndog64 said:

    I did not know this was a
    I did not know this was a side effect. Thank you for the information. I will keep my eye out.

    More clots here
    I too had a blood clot in my arm. I had shots for about 3 weeks and then coumadin for about 5 months. The blood clots are definitely a part of the hassle. I am fine now, just a little scarey at the time as you know....
    Keep plugging on, it will end on a good note.
    All the best,
    Steve
  • meinken
    meinken Member Posts: 38
    #14
    Pulmanary Embolisms for me too
    I spent a week in the hospital because of bilateral pulmanary embolisms. These occurred after my 2nd chemo. My onc cancelled my 3rd chemo because of this. But we started rads on time after I left the hospital. Did lovenox for 2 months and then cumadin for a year. Doc just stopped the cumadin last month.

    The initial indication of the pe's occurred at work. I walked down the hallway at work and couldn't catch my breath. I had to be taken to the hospital by ambulance.

    However, after treatment, there were no additional difficulties (other than the regular Rad treatment effects) and knock on wood(or whatever substitute is available) no reoccurrence.
  • KareGiver
    KareGiver Member Posts: 301 Member
    #15
    meinken said:

    Pulmanary Embolisms for me too
    I spent a week in the hospital because of bilateral pulmanary embolisms. These occurred after my 2nd chemo. My onc cancelled my 3rd chemo because of this. But we started rads on time after I left the hospital. Did lovenox for 2 months and then cumadin for a year. Doc just stopped the cumadin last month.

    The initial indication of the pe's occurred at work. I walked down the hallway at work and couldn't catch my breath. I had to be taken to the hospital by ambulance.

    However, after treatment, there were no additional difficulties (other than the regular Rad treatment effects) and knock on wood(or whatever substitute is available) no reoccurrence.

    Well...
    As much as I hate to hear of these complications for all of you, I do take comfort that my husband is not "unique" in this and that everyone has seemed to recover. He did do radiation today (with a little help from his friend Ativan) and said it wasn't bad. He is doing what my sister and I call "our granddaddy's shuffle" but hopefully he will feel better with each day. We both feel better knowing all of you are out there supporting us! Thank you!
  • adventurebob
    adventurebob Member Posts: 691
    #16
    KareGiver said:

    yes
    Bob, he is nervous about that. I will relay your advice. How long did it take for your blood clot to "dissolve?" Thanks for your response!

    clot
    Mine seized my arm up in a 90 degree bend at the elbow. Literally couldn't bend it. Lovenox cleared it up in about 4 days. Continued until the 2 week dose was gone. Nothing else that caused problems but there were a few clots in my forearms from the Gemzar. I could still see some of them up until a week or so ago. I didn't really have the side effect problems the docs told me about. I had the ones they never mentioned. Still got the L'hermittes too. Doc had never heard of it. Of course the board knew what it was. Thank God for this board.

    Bob

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