Blood clot along with lymphadema?

Options
amanda6
amanda6 Member Posts: 121
edited March 2021 in Lymphedema

i found out this week that I have a blood clot in my lymphadema arm. It swelled to about double it's size & was severely painful. I'm told not to use my pump, do mld or get lymphadema therapy for at least a month. I'm so worried it will get worse & I'll never get control of it again. Any thoughts, experience s appreciated! Found out my cancer metastasized to my lungs & liver as well :(

Comments

  • jhl
    jhl Member Posts: 333
    edited March 2021

    Hi Amanda,

    I'm sorry your cancer has spread. Cancer puts us in a hyper coagulable state so it is not unexpected you developed a clot. I would follow your physician's recommendations - no pump or therapy. I hope you are on treatment for the clot. This is an important time since the medications help the body dissolve that clot. Until that happens, you don't want any pressure differences in your arm to cause pressure on your veins, which might dislodge a part of the clot. The consequence of that could be a pulmonary embolism. So, yes, this is serious but you need to address the most serious thing right now. That is your clot.

    Good luck!

    Jane

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    Thanks so much for your replies java & Jane. That's interesting that cancer causes a hyper coagulable state, something I never knew...we learn so much from our fellow survivors. I am taking eliquis for the clot & was told that it was smallish & might take 3-6 months to resolve. Also to elevate my arm & use it more. The increased swelling has made it stiff & painful to use. I have a nerve thing happening in that arm as well that makes for a pretty painful arm & I have babied it the past few weeks - a mistake I think. I have a solaris night sleeve, been afraid to wear it since the diagnosis. I asked the Dr about it & she said it would be ok, but I'm not at all sure if she has a clue to what that is! She also said wrapping it would be ok, but I'm wary of that as well. There's so little knowledge of lymphedema & so many have it...

  • jhl
    jhl Member Posts: 333
    edited March 2021

    Hi again, Amanda,

    Yes, cancer all by itself, no matter the type, tends us to become hyper coagulable. Anything that might slow blood flow through the veins or cause 'eddies' in the blood flow might cause blood to 'pool'. That is why you are advised to use the arm more which makes the body pump the blood through their proper channels. This doesn't mean your lymph fluids might follow but if they gave you exercises, do them. Just follow your doctor's orders and get the clot under control. After that, you can work on your lymphedema.

    Best of luck,

    Jane

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2021

    amanda - I'm so sorry that your cancer has spread. Do you have a certified LE therapist? They won't do MLD with a blood clot, but they could help with exercises.

    Here's a link to a simple Tai Chi movement:

    https://community.breastcancer.org/forum/64/topics...

    For your nerve pain, are you getting any treatments?

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    Amanda, I'm sorry you got that news - both about your cancer spreading and about the blood clot! I remember your other posts about your lymphedema challenges (LE is so frustrating!).

    I don't have any particular words of wisdom, but I just wanted to send you support and well wishes. Strangely, I was just dx'd with two blood clots too - it's been a rough couple days!

    Interestingly the ER Dr decided to look for blood clots after asking about my compression sleeve and my LE history. It's the first time anyone mentioned the connection between a sleeve and blood clots to me. As it turned out, although I do have clots, mine were not in my lymphedema arm. I'm still learning about all this. I'll let you know if I learn anything.

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    Serenity & Buttons, thanks for your replies. I see my le therapist on the 31March. I haven't been wearing my sleeve since I found out, just elevating my arm & trying to use it more - hard because it's so swollen & stiff. When I went into the er I was thinking I had celluitus, my upper arm had suddenly swelled up & there was a rash - shocked that it was a blood clot. They did a ct with contrast to check the lungs for clots - no clots but cancer - quite the shock!

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    Well, here I am nearly two weeks or so out from first finding my blood clots, and a week and a half into starting blood thinners and I'm still swollen. :-( My main clot is around my collarbone area, but my whole right side and lymphedema arm are swollen and painful. I'm just wondering when this will get better? I'm wearing my night sleeve. I can wear a day sleeve in moderation. The doctor said not to use a pump for 4-6 weeks. Sigh. Just feeling really beat up at the moment.

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    Buttons, so sorry! I'm also 2 weeks out from finding out about my blood clot. It's in my lymphedema arm & the arm is VERY swollen & very painful. Also have pain in upper back, shoulder on lymphedema side. I was told it was ok to wear a compression sleeve, and the night sleeve. Also told the clot could take 3-6 months to resolve!! I bought a new compression sleeve - from size xsmall to size large - it still feels so tight, it scares me & I'm not wearing it much. My current night sleeve is too small so ordered a larger size, waiting for it to come. Yes, I was told to wait at least a month before any lymphadema massage or using my pump. But the Dr thought that a lot of my swelling was clot related, not lymphedema - who knows.

    I'm taking eliquis. Have a biopsy scheduled for Mon.So should have a treatment plan in place by the end of next week. My pet scan showed spread to liver, lungs, some bone & lots of scattered lymph nodes. I think in hindsight that my lymphedema flare up after 10 years was probably a big red flag - the er dr mentioned that too & wondered if there may be a tumor blocking the lymph flow. Yeah, it is hard...wishing you pain relief & a better path ahead. ( I am taking oxycodone & pot for the pain).

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    Thank you for your kind words, Amanda! I hope things get better for you too. I am also on Eliquis. They told me it would take "weeks to months" for this blood clot to get better, but I am thinking it'll be more like months at this rate. I am amazed at how painful and debilitating this has been. Fortunately they did give me pain medicine, which has been very helpful and necessary. I am supposed to resume iv chemo on Monday and I am already so exhausted and sore from the blood clot it seems really hard to get back on the chemo horse. But oh well. I guess we just keep trudging along. At least I got my scan results and the chemo is working, so that's good!

    I hope your upcoming biopsy goes smoothly and that you get a good treatment plan in place. Keep us posted!

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    so pleased that your chemo is working buttons. Oh my, I cannot imagine what it must take to do chemo with the blood clot, like you say they are so terribly painful & debilitating - you are one tough cookie! I had my biopsy this morning & should better know my path next week. I will keep posting & please do the same if you feel up to it...your sister in lymphadema blood clots :):(!

    PS - I love your avatar - would love to know the source!


  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    My avatar is a snippet from the painting Miranda - The Tempest, painted by John William Waterhouse in 1916. (It depicts Miranda from the Shakespeare play The Tempest.) In the painting Miranda watches a shipwreck and holds her hand over her heart, helpless to stop it. Then I stumbled upon a mirror image version of the original image, so that Miranda appears to hold her hand over her right breast. Well, I always liked the original painting, and the mirror image version seemed to hold layers of meaning for me in my own breast cancer "tempest" too. I'm not an art expert by any means, but I have always thought Waterhouse made particularly beautiful paintings. :-)

    Miranda The Tempest by John William Waterhouse 1916 Coastal image 0

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    Ah, that's beautiful. I was thinking Rossetti...thanks :)!

  • Elderberry
    Elderberry Member Posts: 993
    edited March 2021

    I am a big fan of Waterhouse. I have a few prints that I have framed in my home.

    Buttons, amanda: I hope you both are in a better place soon and are pain free and good results on the biopsy.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2021

    Thank you for the well wishes, Elderberry. It's nice to meet others who enjoy Waterhouse's artwork too! :-)

  • amanda6
    amanda6 Member Posts: 121
    edited March 2021

    thank you elderberry :)!

Categories