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Hi again

I guess I knew there was going to be another update before...

Three things:

1. Just to reiterate key visiting info both for the hospital and the apartment in Menlo Park:

 - Do not visit if you are sick, have been around someone who is sick, or who thinks they may be getting sick
 - I’ll have my cell and tablet so please call to say hi and also to check if I’m OK for visitors before you drive over. I may or may not answer you, but I will if I can
 - The BMT unit is in the E1 pavilion of Stanford Hospital, 300 Pasteur Drive, Stanford.
 - You will need to wear a mask and wash your hands which they will give you. No touching me or my bed. 
 - No flowers, plants or latex balloons. I can keep a mylar balloon for 3 days
 - In the shared room (maybe beginning and end), no more than 2 at a time. (I should be so lucky)

2. Someone who went through this last year pointed out that in June I'm currently going from full-time care to being alone in my house, only 3 months after transplant. So, if anyone would like to visit in June/July, it might be helpful, thank you.

3. My information about what I'll be dealing health wise when got updated this week. If you would like to focus your visualizations and prayers, here are my notes from the consent form meeting on Thursday. I'm sure this is way too much information, but sorry- I'm too tired to summarize it and reformat it for this site....but thank you!!

  •      Week 1 Feb 4-9
    o  Dilantin and Busulfan
    o  Key side effect nausea
    o  Dilantin helps reduce risk of seizures from Busulfan
  • Week 2 Feb 9-16
    o  Cytoxan Feb 9-10
              - Side effects delayed until later in week and can last a month or more. Diarrhea, nausea, vomiting, sores in mouth and throat and low blood counts. Less common is irritation and bleeding of bladder and fatal damage to heart. 
              - Mouth and throat sores often considered worst by patients. Hard to drink, eat or talk for up to a month. Often, most nutrition has to come intravenously
    o  Rest day Feb 11
  • Week 2-4 Feb 12-Mar 5
    o  Infusion of new stem cells Feb 12
    o  4 hour infusion of donor bone marrow and stem cells
    o  Typically 3 weeks for white blood cells counts to recover.
    o  During this time at high risk of infection
  • Graft vs Host Disease
    o  Donor cells wake up in an unfamiliar host and want to attack it
    o  Take 2 medications after infusion and going forward for 3-9 months to suppress the wake up of these new cells: tacrolimus and methotrexate. But, since they continue to lower while blood cell counts, they also raise the risk of infection.
    o  Possible side effects of these medications:
           - High blood pressure
            - Liver and kidney problems (drink lots of liquid to dilute in organs)
            - Contribute to mouth sores
            -Hand tremors
            -Skin rashes – avoid sunlight
    o  2 types of Graft Host disease
           - Acute – first 3 months
                   - 40% no problems, 50% some problems, 10% life threatening
                   - Skin rashes, liver and GI tract. GI hardest to treat,  may take months to heal
          - Chronic – up to 2 years
                    -Any tissue in body
                    -Stress on kidney and liver
                    -Most worried about lungs. Need to look for (more) shortness of breath
                    -50% no problems, 40% mild, 10% severe, limit what can do going forward depending on whether particular tissue can repair
                    -Good news is that because I’m getting cells from bone marrow, significantly less risk of chronic graft host
    o  Risk that donor cells don’t grow in bone marrow
                   -Potentially fatal 5%
                   -My mylofibrosis is particularly harder to grow. It has scarred the bone marrow and created a potentially unhealthy ‘soil.’
                    -Getting chemo to make healthier but could take longer for donor cells to grow than normal. Clean up bone marrow through transfusions and chemo
    o  Risk of future cancers from all this chemo. Most common is skin cancer


Love to everyone,


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Comments (1)

  • Julie Danis
    Julie Danis

    Sign me up for a summer visit. Sending you all my prayers and love. I'll be thinking of you every day of this journey. xo, Julie

    5 months ago · Reply

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