Tuesday, December 11, 2012

Blood work, MRI, and bone marrow biopsy - DONE!

J and I actually had a pretty good day yesterday at Dana-Farber. I mean, as far as long days at a hospital go, it was about as good as it could be. :)

We left our house REALLY early in an attempt to avoid rush hour traffic headed into Boston and as a result we had a lot of time to kill when we arrived. Dana-Farber has a "concierge" service where you can borrow books, magazines, and ipads. I have never used this service before but since we were going to be there literally all day and were very early we figured it might be cool to borrow an ipad. Took us a little while to figure out how to work it since we are both a bit technologically challenged. We both still have flip cell phones that only make calls and send texts. Sad and pathetic, but true. Once we got the hang of using the ipad it was a good distraction throughout the day.

Around 9:30 I dropped off my 24 hour urine collection jugs. I transported them this time in a healthy Whole Foods bag which will hopefully result in very healthy pee. When I had my blood drawn and the nurse was printing out all the labels for the tubes of blood she asked me, "Is this normal for you? All these different blood tests?" Hah. Unfortunately, yes.

AND THEN, she left the line in my arm. I tried to explain to her that I was not getting contrast for my MRI but she said she wanted to leave it in, "Just in case..."

Here we go. Back to the contrast controversy. Seriously!

After my blood work was the MRI. I had to fill out a questionnaire (very similar to the questions I was asked during the pre-screening phone call) and then waited for a while. I started obsessively checking my blood work results on the Patient Gateway website. Crazy how quickly some of the tests are processed.

The MRI wasn't bad. As soon as I was called in the radiologist confirmed that I would be having the MRI without contrast and they would take the line out when the test was finished. Thank God. I had to change into scrub pants and this weird wrap-around gown. I laid down on the MRI table and they put a heated blanket on me (ahhhh....I love being warm) and ear plugs for my ears. I was also given this sqeezey ball thing to signal the radiologist in case I needed a break.

Initially, going into the tube I got a little freaked out. IT'S SMALL. Way smaller than a PET/CT tube. My face was like 3 inches from the top of the tube. When the test started I just closed my eyes and almost fell asleep. Thank you, Ativan. My back also got really warm which I enjoyed and also made me sleepy. The test is definitely super noisy but the earplugs helped.

After the MRI was complete J and I headed to the cafeteria. We had a little bit of time before my bone marrow biopsy and aspiration. I continued to check my blood work online, ate a little fruit, and then apparently, according to J, just sort of stared off into space for a while. Again, thank you, Ativan. :)

Next, was my bone marrow biopsy and aspiration.

I was REALLY nervous since I had such a terrible experience during my first biopsy in July with the crazy cramping and leg spasming. I described what had happened to the PA and mentioned I still had sciatic pain down the back of my left leg. He was a little horrified, confirmed that the other PA must have hit a nerve, and said that hopefully this experience would be very different. He was also going to preform the biopsy and aspiration on the right side this time. I think in an attempt to not totally throw the other PA under the bus he said maybe my right side will have less nerves. Sure....

Anyway, this biopsy was definitely a completely different experience than last time. It was a piece of cake! Well, not really, but it was a heck of a lot less painful. The PA told me exactly what was happening and had me breathe in deeply then breathe out really hard as he was doing the aspirations and biopsy. Now, of course it was still painful and I wouldn't want to have one everyday, but it was definitely tolerable. Nothing compared to my last biopsy. The bone piece looked completely different this time. Almost curly and in fragments, not like the 2 inch long uncooked spaghetti piece in July. I hope the piece was enough to get a good reading!

After my last biopsy I was out of commission for like a week. And down the back of  my left leg still hurts to this day. This time, 30ish hours after my second biopsy, I just got home from a spin class! What a difference a good PA makes!

But let's be real, I'm exhausted and really probably shouldn't have gone to class. But the Permanent Health Kick must continue. :)

21 comments:

  1. I'm happy for you that your bone marrow biopsy went so well. My experience at Dana Farber has been good too. I think the techs there are great.

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  2. Im glad to hear that it went better than last time. My first biopsy didnt hurt, I think I got lucky with that one, and for my second they put me out. Thank God! However I did hurt more after with my second than my first. =/

    So did your dr. tell you to start going the Holistic route because it may help prevent things from progressing?

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    1. Ugh, BMB are the worst! I hope you are doing well!

      I think at this time there is no completely scientifically "proven" way to keep MGUS/SMM from progressing. However, my hem/onc has really strongly advised me to develop a healthy lifestyle as far as diet and exercise. He did say that stress actually has been proven to progress myeloma. As far as diet and exercise go - it definitely can't hurt. :)

      There is another blog called Curing Myeloma that you might want to check out. The woman who writes the blog is using alternative nutrition and detox therapy called Gonzalez Therapy. Also, a lot of people take the supplement curcumin and believe it helps.

      I'm not doing anything radical at this time - just healthy eating, trying to limit my intake of toxins in both food and products, lots of exercise, and as much stress reduction as I can. I've been told that curcumin can affect pregnancy so I'm holding off on that option at this time.

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  3. I am glad that your BMB and MRI tests went well. I hope that your stress level did not increase too much! I am also glad that you did not have to have contrast for the MRI this time. I am one of the curcumin takers, currently at five grams a day. Organic food is nature's best medicine!

    Dan - IgA lambda dx 8/09

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    1. Thanks, Dan! Yes, I am also glad I didn't have the MRI with contrast. :) How long have you been taking curcumin? Do you think it's helping?

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  4. I'm glad you made it through a long day and the BMB was tolerable! I can't believe you did a spin class the next day. That is so impressive as long as your taking care of yourself! When do you get your results? Thinking of you!

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    1. Hi Carol! Thanks so much for thinking of me! I meet with my doctor on Tuesday 12/18 to discuss the results of all the tests. Some of the results are available online but I might try to email my doctor's secretary tomorrow or Monday to get the results prior to my appointment. I hope you are doing well too! :)

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    2. I have treatment tomorrow. Then I get a 2 week break:) I still am impressed with spin class! I need to start working out. So hard with two jobs and treatment. I know it is imparative though! Your an inspiration. I will check back later on your results. Have a good friday

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    3. I hope your treatment went well today! That's great you get a two week break and I hope you are able to do something fun on the next 2 Fridays and weekends off!

      Honestly, I've worked on off and on my whole life but never this consistantly. I'm still getting used to it! :)

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    4. Whoops, I meant "worked out" off and on my whole life. I've just started working out hard core since the summer. :)

      I do work full-time too as a teacher! I sympathize with you have two jobs - that must be so hard!

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  5. Glad to hear all went well with the BMB and the tests. When do you get your results? At UAMS your BMB and other tests are done on a monday and you get ALL the results by Wednesday and meet with your doctor? Good Luck!

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    1. Thanks, Keith!

      I can check my results online for some of my blood work and the 24 hour urine - they start posting pretty much immediately after my blood is drawn. The pathology tests (biopsy studies, SPEP, IEP) are not viewable online by patients which is really annoying (it just says 'see pathology report'). I have an appointment scheduled to see my Dr. on Tuesday to discuss the results. I am going to email his secretary either tomorrow or Monday and have her send me my m-spike and biopsy results assuming they are ready. I haven't decided whether I want to know the results before the weekend or not....

      That's great UAMS has such a quick biopsy result turn around! I'm impressed!

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  6. I started taking 4 grams of curcumin daily in January 2010 after researching curcumun extensively. I started at 1 gram for a week and added a gram a week until I reached the four gram level. I added one gram of Meriva curcumin in July of this year. For Margaret's protocol see Margaret's Corner blog at http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/my-curcumin-protocol/my-fall-2010-protocol/
    I also take green tea extract(EGCG), vitamin D3, and calcium (for osteopenia).

    My total IgA came down very slowly from 470 mg/dL and is currently stable at 430 mg/dL, just above normal. My m-spike fluctuates but stays around 0.3 g/dL. I think that curcumin and the other supplements help me to remain stable. Margaret has had stable SMM since 2005. I hope that you receive good, stable test results!

    Dan - IgA lambda MGUS dx 8/09

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    1. I am taking 1000 mg/ day only along with 1000 mg of calcium. I do not yet know if it is working or not.... my numbers have been creeping up since july 2010. I guess we will see? LOL
      Good luck to all with their tests in the coming new year!!!

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    2. Thanks for all the curcumin information, Dan! I'm glad it seems to be working well for you. Have you had a bone marrow biopsy?

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    3. Keith - sorry to hear your numbers are creeping up. Hopefully the curcumin is causing the "creep up" be very slow. :)

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  7. I had a bone marrow aspiration and biopsy at initial diagnosis. The lidocaine worked and the biopsy was not painful. Plasma cells were 4% which supported the MGUS diagnosis. Most IgA patients have a bone marrow biopsy due to the intermediate risk of progression for the IgA type. I hope that you receive good test results!

    Dan - IgA lambda MGUS dx 8/09

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    1. That's great your biopsy was not painful! I wish I had a biopsy when I was first diagnosed in 09/09 so I would know if the plasma cells were less or the same as they are now.

      If you don't mind me asking, was the 4% plasma cells from the aspirate, biopsy, or intertrabecular space? Or did your doctor average the numbers? Have you had a biopsy since?

      I know to be categorized as MGUS you have to have an m-spike of less than 3 and less than 10% plasma cells. My m-spike is .42, definitely less than 3. But, the reason I ask about where the 4% was derived from is because my biopsy in July showed 3% plasma cells in the aspirate, 10-15% in the biopsy, but 6-8% of the intertrabecular space. I got my aspirate and biopsy results from last week too. Aspirate was 1%, biopsy was 10%, but 5% of the intertrabecular space. So... my plasma cells = 3%/6-8%/10-15% OR 1%/5%/10%. I guess we'll see what my doctor says tomorrow. :)

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  8. The 4% plasma cells number is just the average. The cells are counted in a certain area, so the percent of plasma cells depends on the small area of the biopsy that was sampled. That is why sometimes a bone marrow biopsy is taken from both hips. I have not had another biopsy since diagnosis because my m-spike and total IgA have remained stable. I hope that you have a good report from your doctor!

    Dan - IgA lambda MGUS dx 8/09

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