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Friday, November 11, 2011

November 11, 2011 - Some good news and some not great news

First let me say that I was going to post this last night but the internet was down at the transplant house.  Earlier this week Margaret had a PET scan looking for how much cancer was still in her body.  We met with the doctor on Thursday and got the results.  The results are that she has ‘significantly less cancer than there was before but we have a significant way to go’.  Originally her liver was about half lymphoma and that is down a significant amount but he was hoping that there would have been much more already gone so on Thursday he added real chemo to the mix.  She still has some in her bowel but some of the digestive tract issues are a bit better. Having been on chemo before we did not think this was great news.  The Rituximab had no side effects that we could tell since it was just going after the specific cells and not all cells there were no chemo side effects.  Now with chemo in the treatment plan that will likely change.

Thursday was her first round of chemo and every three weeks she will have another treatment of chemo for a total of six rounds and to save you from doing the math that is 18 weeks or four and a half months (yes, I did that all in my head, didn’t even need to write a program for that).  This will hopefully get rid of the cancer quicker and is the ‘normal’ treatment but he was trying to hold off of the chemo part because of possible (small chance) of cardiac side effects with the new heart and all.

For those of you who have experience or knowledge with all of this stuff she is on 180 mg of prednisone for day 5 days starting on the chemo day and then for four more days for a total of five days.  The chemo is called Chop or R-Chop which is a mixture of the prednisone, vincristine, doxorubicin and cytoxan.  The prednisone is pill form and the rest is all IV.  And let us not forget that she will still be getting the Rituximab which is IV. If all goes well after the first round she may be able to come home between rounds but they are HIGHLY recommending that we return for each chemo day and probably an extra day or two for tests (PET, echocardiogram, blood work, etc). It also may take two rounds for her to be able to go home, we will have to wait and see.  They are also pretty much promising that she will lose her hair so Margaret guesses we can save on trips to the beauty salon for a while.  One other side effect of the doxorubicin is that it turns her pee red. Very cool, but I have not had a chance to witness it yet (yes I am weird).

Mayo has a ‘losing hair from chemo’ store and we visited and got a few head covers.  In time we may get a wig as they have them also, I suggested a redhead, brunette and blonde one…….Ooo la la!

Her blood work does continue to improve which is very good.  Her Alk Phosphatase started at 268 and is down to 162 (normal is 41 – 108).  Her AST started at 77 and is now 29 (normal is 8 – 43) ** Normal Level!! Her LDH, lymphoma marker started at 606 and is now 376 (normal is 122 – 222).  As you can see the numbers are coming down and one of them is in the normal range, this is very good.
 
Today she had a Neulasta shot to help her white blood count recover from the chemo.  She is awake and out of the room more and even walked to the neulasta shot today once we got to the clinic by shuttle, this is great since she has been in a wheelchair while at the clinic since we got here.  She also walked with me so I could get my flu shot (great just what I wanted a needle. I don’t like needles).  She is still a little pokey on the walking speed but she is still walking, gotta love the steroids!

Thank you for checking in!

4 comments:

  1. Praying for Margaret to continue recovery and for strength during this difficult time. Please don't let Margaret hear you complain about a "shot". Geez! LOL
    Love you guys, Auntie

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  2. Mailed a card from Rose of Sharon to your home with Masses said at the St. Jude Center in Chicago (you know that I have a special bond with St. Jude). Wish there was more we can do...know that many prayers are being said for you and your family.
    You are often on my mind...you have been through so much. You are very special to me, Margaret.
    Love, Sylvia

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  3. Well Steve and I are talking about you and praying for you and planning our next Chicago meeting and it will be one you both will enjoy.

    If the weather is "decent" forecast wise, Steve and I can drive up to see you one of these weekends if you are still there. We love the drive along the river. I've got the Phoenix meeting this weekend, and then thanksgiving (we could come up then - weather permitting on the sat and sun). BUT YOU HAVE TO BE HONEST AND TELL ME YES OR NO. I know there are days and there are days.
    Love,
    Muriel and Steve

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  4. Prayers are headed your way daily, including from my prayers groups. I pray for healing so your whole family enjoys many years together thanks to this new heart. This new heart, unfortunately came with unwanted baggage. You will overcome and heal, Margaret. May God give you strength to endure the hardships along this journey to good health. I love you and I miss you. I am so sorry to be so far away.

    XXOO Linda

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