Not again?!

I had a thoracentesis done right before the cruise, less than 2 weeks ago. The procedure itself was more difficult than the first, I assume because it was more than twice as much fluid. I was advised that I’d be sore for a few days but that I’d feel better after a day or two. By the time the cruise came, I still had chest pain but it was significantly better. As the cruise went on though, the pain didn’t go away and towards the end of the cruise, it started to get worse. It woke me up at night quite a few times and I was struggling to breathe going up & down stairs or carrying Jacob around.

By the time yesterday came, I was texting my nurse oncologist by 730am to see if I could have my oncologist listen to my lungs. Being the wonderful people that they are, I headed over, went in the side door and as I walked past the oncologist’s office, he walked over to the room with me and started chatting immediately. Of course they all wanted to hear about the cruise and we swapped stories about horseback riding. Afterwards, I asked him if he wonders about me when a week goes by and he or his office doesn’t hear from me. He laughed at this, mentioning that he does ask about me when I haven’t checked in. 😊 What can I say? I’ve become a bit needy… πŸ˜‰

Anyway, I explained the chest pain that I’ve been having that is just like before but the pain is significantly worse. He listened to my lungs and indicated that he could hear fluid in them, though it wasn’t as much as he had heard in my lungs before – which was a week before my last thoracentesis and 6 days before my x-ray confirmed 50% right lung usage. My thought on this is that I imagine the fluid is collecting so rapidly, by the time I have an x-ray done, it’s typically filled up quite a bit more.

We discussed that I have scans being done and see the Nurse Practitioner next Monday. The fluid would show up on a CT, and probably better, but he did not want me to wait a week before having my lungs checked if I am having symptoms- especially significant chest pain. So he wrote me a script for an x-ray and said that I can use it if I feel worse between then & Monday and let them know to check the results when it was completed.

We also discussed the chest pain and he switched up my medication a bit, particularly around nighttime since I am having a difficult time sleeping because of the pain. The medication took me to 4 different pharmacies to find and cost $163.45 for a 30 day supply. Unreal. So what’s worse? Yeesh.

The medicine seemed to help a bit and though I woke up like clockwork at the 4 hour mark, it didn’t hurt as significantly and I didn’t stay awake as long. By the time this morning came though, I had pretty intense chest pain and decided not to wait on the chest x-ray. It concerned me that if the fluid was growing that rapidly, I may not make it until Monday without something worse happening – plus the pain would only get worse.

So off I went today. Thankfully, an x-ray is relatively quick compared to other scans and an appointment for one is not needed. Afterwards, serious resting was required. I won’t lie, I felt pretty bad today. I have the chest pain plus extreme nausea and absolutely no appetite…I don’t feel as though I can function properly.  Resting was necessary. 

A call from the oncologist’s office a few hours later confirmed that the fluid is back, as suspected. Although it didn’t indicate how much of my lung was being utilized, it did state that the fluid amount was significant and compressing my lung. I am scheduled for another thoracentesis tomorrow (assuming insurance approves it), as well as blood work ahead of time to review my platelets. I pray they are not too low for this procedure to be done.

So that’s that. Never a dull moment here. The big question is obviously around why the fluid is coming back so quickly, whether or not the Afinitor is working and what to do going forward (how to prevent this from happening versus what to do when it does). I don’t have the answers right now. I have my own thoughts and opinions but I am anxious to talk to the doctors tomorrow. 

For now, this sweet boy is helping Daddy to take care of me. And they are both doing a wonderful job! I am absolutely a blessed woman. It’s lots of rest for me tonight – and hopefully some relief tomorrow! 😊

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16 thoughts on “Not again?!

  1. Hello Red, Have your doctors mentioned the type of therapy which uses a patient’s own immune system to fight cancer. My understanding is that the therapy called CAR T Cell Therapy has been used to fight cancers of the blood but more recently it has been tried with other types of cancer. There is a trial being conducted at MSK in NYC which began in September. There are serious risks associated with this therapy.

    Liked by 1 person

    1. Hello! I think this is one that I have heard of and actually I think it’s directed towards triple negative breast cancer too. From what I have read, all immunotherapy is in trial form right now. In order for me to participate in a trial, I have to have “measurable disease”. This means that my cancer needs to be at least 3 centimeters large in order to participate. The cancer in my skin, though there are lots, none are big enough yet. And my bones cannot be used because they will always have scars where the cancer is/was.

      This is my understanding as of a few months ago. If you have information to share, I am always interested in learning more! These things seem to change so frequently that I can quickly fall behind in updates!

      Thanks so much!!

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  2. I am going to share 2 links here, the first one will take you to the MSK website page which discusses the trials which they are conducting using CAR T Cell Therapy, the post is dated 9/23/16. You will have a better understanding of whether or not this therapy would be appropriate for you than I am able to determine. At the very least it might be something to discuss with your doctors. The 2nd link describes both the successes and failures which have resulted from this therapy which you should know about. https://www.mskcc.org/clinical-updates/exciting-new-car-t-cell-therapy-trial-opens-msk https://www.bloomberg.com/news/articles/2016-12-02/deaths-in-cancer-trials-remain-mystery-for-promising-therapy

    Liked by 1 person

      1. I use Young Living! I mostly diffuse because I’m learning. Don’t know a whole lot about combinations and such. Do you find a certain book or website a good source of information for that?

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