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Saturday, 08 March 2008

  • Treatment is pretty anticlimactic

    After the surgery, the waiting, the worrying, the stressing, the deciding and the anticipation, treatment turns out to be pretty boring. I went yesterday, had my bloodwork done (counts are good!) got my Tylenol, steroids and Benadryl and then had the Rituxan. It's boring and takes several hours, but I read, watch TV, eat lunch and usually have a bit of a Benadryl nap. Then I go home and continue my day as if nothing out of the ordinary happened.

    Two more treatments! Then I've got to wait a few months before they do a scan to see if it's gone. If it is, I'm golden. If not, I may end up going on and doing radiation, but it's a bit soon for even me to worry about that.

Friday, 29 February 2008

  • Feelin' Groovy!

    Yesterday, I went and had the first part of my first Rituxan treatment. My doc splits that first treatment into two days, giving 1/3 of the dose the first day and the last 2/3 the second day.

    I got there at 9:15, had blood drawn and went up to the infusion room. I had a little cubicle right in front of the nurse's station so they could keep an eye on me. The same nurse who couldn't get the IV into my hand for the bone marrow biopsy couldn't get it into my hand for this either. Another nurse came and put it in my forearm.

    I got a dose of steroids and a dose of Benadryl through the IV first, along with a couple Tylenol. They do that to hopefully minimize the reactions to the drug. They start the drug very slowly and speed it up if things are going well. All was fine until about 2 hours into the Rituxan infusion when I realized that my throat was itchy and I was sneezing. So, they stopped it for about 20 minutes to see if the reaction would stop, and when it didn't, they gave me more Benadryl. After that, all was well and I was done about 2:45.

    I had a little TV that I turned on for some background noise and I had my books and my lunch and snacks. Since I had so much Benadryl, I was very sleepy and I napped two or three times. After I got home, I rested, had dinner and then dozed on the couch until I went to bed at 9. I felt much better when I woke up this morning except my eyes were both very puffy. One eye started yesterday and the nurse thought it was from the steroid and my brother agreed that was possible.

    Since they have a hard time getting the IV in, she wanted me to leave it in last night. So she just bandaged my arm where the needle was and sent me home. Ick. That stuff makes me kind of queasy. Good thing I was so exhausted that nothing bothered me last night.

    Today was much better! I went in at 9:30, got my Tylenol, steroid and Benadryl and was getting the Rituxan by like 10:30. I had no reactions so they were able to keep speeding it up and I was out of there at 1:45. The next three weeks should be even faster. And, I'm not exhausted today but I still didn't do any work at all when I came home.

    Thanks for the suggestions about what to bring with - I had a big jug of water and went through it both days. Good thing I could unplug and go to the bathroom! I  also brought this blanket/shawl thing I have and it really came in handy. It was cold and the drugs were colder!

    So, round 1 is done! I'm 25% there! I'm just hoping this does the trick.

Wednesday, 27 February 2008

  • Here we go

    9:15 tomorrow morning.

    I'm having my broken filling fixed this afternoon since I think there might be concerns about dental work once I've gotten the Rituxan. I'm not sure how much more fun I can handle.

    I've got my list of stuff to bring tomorrow, including books, my notebook, food, water and my blanket. Hopefully I'll feel like checking in when I get home.

Friday, 15 February 2008

  • Decision

    I'm going to do the Rituxan. I start with a two day infusion on February 28 and 29 and then go each of the next three Fridays to finish up. The first sessions are so they can give it really slowly to test for any reactions. It will probably take 3-5 hours each time. But I can bring my lunch and books and they have TVs, so it should be boring but not intolerable.

    I've seen information about them using Rituxan for Rheumatoid Arthritis and there was just something in the paper about some positive tests they've done with Rituxan for Multiple Sclerosis. Those are both autoimmune diseases. I also came across some information about trials using Rituxan to treat Graves' Disease (also an autoimmune disease). Now, I don't test for Graves' and my eyes don't have all the signs they would expect with Graves', but given my family history and the general look of my eyes, everyone seems to expect me to have Graves' at some point.

    So, I asked the oncologist today if doing the Rituxan could delay or eliminate the possibility that I will get Graves'. He said it's hard to tell for sure, but it's likely that it could have a positive affect. That's cool. I expect that was part of his consideration when he recommended Rituxan in the first place.

    Here we go...

Saturday, 09 February 2008

  • Still trying to decide...

    I've got a boatload of information on Rituxan now. My SIL sent me a big package of info on both Rituxan and radiation. My brother has been helping me research Rituxan and its use as a treatment alone. I spent a ton of time researching and couldn't find anything to indicate that the treatment is commonly used alone; everything I found, including the package labeling, showed it used in conjunction with chemotherapy. My brother taught me a new word - monotherapy - and once I used that in my searches I've been able to find out much more about Rituxan's use alone.

    But, I'm now really interested in the use of antibiotics as a treatment for lymphoma, and specifically for orbital lymphoma. There have been studies that have shown that at least some orbital lymphomas can be caused by a bacteria (I think) called chlamydia psittaci and that at least some response may be achieved by using an antibiotic called doxycycline. I also found that there's a current study using Biaxan for lymphomas.

    Onc1 is out of town until Tuesday, but I have a message in to talk to him about looking into antibiotics as a therapy. It sure would be less invasive than either radiation or Rituxan.

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