Pulmonary embolism now what?

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LoveBig
LoveBig Member Posts: 24

I had a CT Wednesday to check for mets and they found two clots in the right pulmonary artery. I had hip replacement due to meets September 7th and I am on 125 Ibrance, femera, depot lupron shot and xgeva shot. My oncologist had me start eliquis 4 times a day and I see him Monday unless I have chest pain or shortness of breath then I'm to go to emergency.

I'm worried this will greatly effect what meds I can take. My mother also had PE while doing chmo for colon cancer she passed away from it so I'm really afraid of that right now. It seems like it's just 1 thing after another. I can't catch my breath before they hit me with something else. Just needing to vent and worried.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited November 2018

    How great they caught it before it caused trouble!

    I'm doing the lovenox shots for a DVT. The medication hasn't gotten in the way of any cancer treatments. My MO says that cancer folk are prone to clots, and I'm sure that the immobility of recovering after surgery didn't help. That's what got me - I had to stay in the same position for 7 days to recover from a vitrectomy.

    It does seem like it is one damn thing after the other though, doesn't it? Eliquis is a really good drug. I'm in a sort of clot survivors support group, and I haven't heard of anyone having further clot trouble once on this drug. In fact, one doctor chimed in to say that it was "impossible" to develop a new clot while on the drug!

    Take care.


  • LoveBig
    LoveBig Member Posts: 24
    edited November 2018

    Thank you I have been worried there were more clots forming. I was down last month for about four days after the bone shot. It makes me really nauseas if I move I am pretty sure that's when it happened my right calf was hurting pretty good. I chalked it up to the shot. I'm glad it doesn't change treatment my oncologist wants me on ibrance as long as possible.

  • gramen
    gramen Member Posts: 179
    edited November 2018

    Thank you for posting this. Im going thru something similar. Monday I went to get my scheduled infusion and was sent to the ER because my shortness of breath.

    I have extensive lung mets, pleural effusion with pleurx catheter to drain...so when the ER Dr said they found a blood clot in my right lung, I wasn't surprised but still asking myself how to deal with this now.

    I was on the hospital for 3 days with IV Heparin, and now taking Xarelto twice a day.

    Hopefully we all get this too under control

  • LoveBig
    LoveBig Member Posts: 24
    edited November 2018

    I hope so too. I was surprised and the radiologist was as well that I wasn't sent to the hospital. I was glad to spend Thanksgiving with my family but every twinge in my chest scared me. I remember my mother I was with her when she passed.

  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2018

    ::raising hand::

    I, too, had a Ct scan 10 weeks ago, [maybe more?] which showed stable and this pesky embolism. A small one, terciery artery, but there none-the-less. Frantic phone calls on a Friday, and I had started the Lovenox that night. Unlike Jennifer who is a rock-star, I am a wimp and my husband does the twice a day shots. Yes, I hate this, but what else can we do?

    My CT scan from two weeks ago states that they no longer see the embolism, but also says "this isn't the right test to see for sure." Radiologists are really good at the CYA approach to medicine. However, they saw it on a CT and now they don't which is good enough for me.

    You really should be good now that they have been seen before you had issues.

    *susan*

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited November 2018

    I was just going to pop in here and tell our Cancer Village that people with stage 4 are prone to clots. Tumors aren't our buddies.

    In that case, I sure wish we had more education about it. I had a vitrectomy on my right eye, very boring long story, but the upshot is that you have to stay in the same position for 7 to 10 days while the gas bubble they place in your eye to stabilize the retina dissolves, and is replaced with eye jelly. Super Fun.

    That's when I got my clot, because I wasn't moving around, and I wasn't hydrating enough because bathroom trips meant going out of position. Now, had I been warned about clots, I would have changed some of my behaviors.

    Sp spread the word! We have to keep moving. Talk to your team about a daily baby aspirin. Even if we don't want to stay hydrated because wet undies are a bore, we have to keep drinking fluids.

    Google clot symptoms and be aware. I had a DVT, which is not as scary as a pulmonary embolism at all. I had a puffy leg with no pain or discomfort, and just pointed it out as a "Look at that weird thing" on a regular MO check up. My fanny was on an ultrasound table so fast, my head is still spinning from it.

    Any chest pain, breathing difficulties must be checked out in our population. Add to the list, strange non symmetrical pain. It is an aphorism for we metsters that we should hold off on reporting a new symptom for two weeks, to see if it resolves, but I think most of us have learned how to recognize a new cancer pain from a weird-ass pain. The latter should be addressed promptly. And for those newbies, who haven't learned pain divination yet, you will. It is a useful, tedious, tool.

    My big exciting news is that I've lost enough weight from spine pain that I'm down to one shot a day. I know I'm feeling better now (doing radiation) because I am eating. all. day. I wish I could blame Thanksgiving, but we didn't do it this year. I sat on the sofa and jammed five oranges into my gob last night. The dog is used to getting most of my meals, and is looking rather put out about the diminished plates I'm pushing her way.

    Oooh. Oranges. Gotta go. :)

  • LoveBig
    LoveBig Member Posts: 24
    edited November 2018

    I was warned with tamoxifen not with the new meds after my cancer metastasized. I did know it could happen from my hip replacement I was still taking a daily adult asprin for prevention. Actually wasn't concerned since I was so far out from surgery. I do wish I wasn't so tired and out of breath doing the least little thing.

  • gramen
    gramen Member Posts: 179
    edited November 2018

    Jennifer,

    Thank you for sharing with us. I feel lost, and the info you shared is valuable!

  • Szucs
    Szucs Member Posts: 21
    edited December 2018

    Is the vitrectomy related to cancer?

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited December 2018

    Tangentially. I'm a little young for a retinal bleed, so my eye doctor thinks it might be related to the bunches and bunches of chemo I have had. I'm awfully glad they could fix it, as I don't plan on going without chemo.

    For my fellow metsters, steroid use will accelerate cataract formation. Just let your eye doctor know what your chemo dose of steroids is. If you need them, you need them.

  • JFL
    JFL Member Posts: 1,947
    edited December 2018

    The proteins the cancer creates/stimulates the body to create can put us at risk for DVT and PE. I had a subclavian DVT at 28, just over a year before I was diagnosed with breast cancer, which was being caused by the cancer. In hindsight, it is shocking no one even tested me for any cancers as the #1 cause of DVT/PE is cancer - my DVT was rare given the location and my age. I was tested for everything else possible other than cancer and nothing was found. Despite the risk, I did take Tamoxifen for nearly 5 years after the DVT. I was monitored closely and remained on a baby aspirin the whole time. I am not on baby aspirin right now because of bleeding risk with my chemo but I do stay on it whenever I do not have a medicine contraindication.

    I had a friend diagnosed with early stage BC around the same time as me. She survived cancer but died of a blood clot after she gave birth to her third "miracle" child. We were all shocked beyond words. It happened so fast. Anyway, since then, I am even more vigilent. I was pregnant when diagnosed and had to have the baby out 7 weeks early because I was essentially dying of uncontrollable hypercalcemia and no treatments were helping me. I needed my estrogen levels lowered. Anyway, at that point, my bone mets had turned my whole body into swiss cheese to where I could barely take a step up or down and could not even sit up or down without putting all weight on my arms. My hips were about to disintegrate. However, after I had the C section and in my awful, excrutiating state with bone mets, I forced myself out of the hospital bed very quickly after I had the C section and would make myself walk a few times a day. Everyone was shocked I was up and about but thinking about my friend Kat who died, and thinking of my baby in the NICU down the hall, I was determined not to get any blood clots after the surgery. Definitely important to keep moving in general but after surgery or procedures, it is critical, even if it is very difficult to move at that point and that last thing on earth one wants to do.

  • Szucs
    Szucs Member Posts: 21
    edited December 2018

    Is vascular attenuation the same as vitrectomy?

    image
  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited December 2018

    Nope. I whipped through Dr. Google, and it seems to indicate narrowing of the blood vessels in the retina because of hypertension. It should be managed/observed because the narrowing of the vessel can lead to vessel blockage in the retina.

    Now, this is just me, reading https://www.reviewofoptometry.com/article/recogniz...

    This is something you need to talk to your eye doctor about. If they didn't bring it up as a big deal, I'll bet you barely have the symptoms, and they are just being a good doctor by noting it.

    A vitrectomy is where they suck all the jelly out of the eye and replace it with a gas bubble. Over seven to ten days the gas dissipates and is replaced by brand new vitreus humor. In my case, it was done because I had a retinal hemorrhage, and the vitreus humor was full of blood, so I was blind in the eye. I could have waited six months to see if it would clear on its own, but my eye surgeon thought that it probably wouldn't, and being blind in my dominant eye was freaking me out. I was extremely nearsighted in that eye, which can lead to retinal troubles as one ages.

  • Szucs
    Szucs Member Posts: 21
    edited December 2018

    blaine, is your vision okay now? I hope so.

    My grandma passed away, she had triple negative stage 4 breast cancer. I ended up getting I believe all of her records before Kaiser blocked access. Wasn't trying to do anything sneaky, she would have approved. Anyway, so I came across that on her records from 2015 and I was wondering if it could have been an early indicator as she was only diagnosed in August 2018. Passed away on Oct 27, 2018.

    She went to the hospital and had a Thoracentesis done, draining of fluid around lungs. They discharged her, she was not well, we should have gone straight back to the hospital. She ended up going back the following day and from there she all of a sudden was put on hospice. They kept her at hospital for five days until "stable." She couldn't move, or even talk, three days later she passed away. The last "ongoing symptom" on her record as Kaiser calls it was AHRF.

    There was no change in who my grandma was, she never seemed sick or in pain. Damn, I miss her.

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