Day +373: DNA, you’re in my heart…

“DNA, in fact you’re in every part of my body
Each cell has a nucleus, each nucleus has chromosomes
And DNA, baby, that spells DNA”

One week ago I had my first annual post-transplant check-up at Johns Hopkins.

I started by “donating” 11 tubes of blood for an array of tests, followed by 5 immunization shots and a bone marrow biopsy. For fellow transplantees (or transplant wannabes) that want to compare notes, I had the following vaccinations:

  • Diptheria/Tetanus
  • H. influenzae type b conjugate [bacterial meningitis]
  • Hepatitus B
  • Inactivated polio
  • Pneumovax 23 [pneumococcal pneumonia]

I got two injections in one arm and three in the other. Only one hurt at all and another bled some and left a big bruise.

In two months, I return for boosters on all of these except Pneumovax; in a year, I get all of them again with the addition of MMR (live attenuated virus) [measles-mumps-rubella]. I already had my seasonal flu shot a couple of months ago and am supposed to repeat it annually.

My 8th bone marrow biopsy was the least pleasant thus far, although not excruciating. As usual, I lay on my stomach and had lots of lidocaine injected into my lower back/butt cheek to numb the area. Then the nurse practitioner drilled into my bone and attempted to get a core sample aspirate. I noticed it hurt more and was taking longer than usual so asked what was wrong. She asked if I’d ever had a dry tap (no, I hadn’t) and noted that my bones are very soft. After three attempts in different spots of the bone without externally relocating the needle, she took the bone fragment biopsy and then withdrew, numbed a new location, and went in laterally for the aspirate. I told her to not give up until she obtained a good sample because I wanted the diagnosis to be as thorough and accurate as possible. This time, she was successful. I was a bit shaky afterwards but think it was because she slapped a big bandage on my butt and sent me on my way as soon as she finished. Ordinarily, they get me to lie on my back to put pressure on the site while I relax for 15 minutes to assure there’s no bleeding and that I’m okay. I was okay after I had a chance to sit down for lunch, although I was rather sore and stiff for the next couple of days.

We saw my transplant nurse practitioner, Audra, and doctor, Dr. Jones, after lunch. My blood work was quite good:

December 1:
WBC: 2920 (norm 4500-11000)
ANC: 1610 (norm 1500-7800)
Platelets: 433 (norm 150-350)
RBC: 3.73 (norm 4.00-5.20)
HGB (hemoglobin): 13.1 (norm 12.00-15.00)
HCT (hematocrit): 36.8 (norm 36.00-46.00)
Bilirubin: 0.6 (normal 0.1-1.2)
AST: 44 (normal 0-31)
ALT: 42 (normal 0-31)
Alkaline Phosphatase: 188 (norm 30-120)
Ferritin: 708 (norm 10-300)

We discussed the testing and results from the NIH study, and Dr. Jones prescribed the NIH recommended steroid mouth rinse to try to reduce inflammation and slow or stop further fibrosis of my salivary glands. He also prescribed prophylactic Nystatin rinse to prevent oral thrush. I’m to try this regimen for 2 weeks and then evaluate improvement, if any. Audra emphasized the importance of good dental hygiene and regular visits to my dentist because extreme xerostomia (dry mouth) like mine can cause loss of enamel, cavities, and other oral problems. She recommended seeing my family doctor to prescribe something for my osteopenia because I’ll need long term follow-up. For my eyes, I’m to continue the Restasis and Refresh drops daily as previously prescribed. After more discussion and a brief physical, Dr. Jones said he didn’t want to treat my other GVHD symptoms because the treatments have many adverse side effects, and having a slight amount of cGVHD actually helps prevent relapse due to the graft vs. leukemia effect. I’m to return for a check-up in two months.

Because the Vidaza treatments might exacerbate the GVHD, Dr. Jones decided to stop after 10 instead of going the full year. The post transplant treatments are experimental, believed to help the new immune system target any potentially lingering disease, but there is no documented evidence yet to know if effective or the optimal number of treatments. So I had a total of 21 Vidaza cycles, 11 prior to transplant and 10 afterwards, a total of 210 injections in my stomach! They weren’t as bad as they sound, and I will be always grateful that this relatively new (within the last 9 years) drug most likely saved my life by putting me into full remission, buying me time to find a fully matched donor for my transplant and allowing me to live a relatively normal life in the interim.

On a side note, something I really like about Dr. Jones is the obvious respect he shows his nurse practitioner, Audra. He included her in every discussion and asked for (and actually listened to) her opinions. My visits do seem rather rushed in this very busy clinic but both Audra and Dr. Jones are accessible via email and respond promptly to questions and concerns.

Before we left, we visited some of our old favorite nurses and techs on Ward 5B – Molly, Fran, Crystal, and Carol. They were delighted to see us and couldn’t believe a year had passed so quickly.

I saved the best news for last. I got my biopsy results yesterday, all good! Here’s a quote from the report:

“The marrow is normocellular (40%) for age with a normal M:E ratio. All hematopoietic elements are present with full range of maturation. Megakaryocytes are normal in number and morphology. The associated aspirate shows trilineage hematopoiesis with complete maturation. There is no evidence of increased blasts or significant dysplasia. Flow cytometry studies show no increase in blasts. Chimerism: no evidence of patient DNA.”

In simpler terms, this means my bone marrow cells are 100% donor and show no evidence of disease. HURRAY! Another milestone completed.

Oh, I nearly forgot to mention that the acupuncture and/or acupressure seem to be having a positive effect. The past couple of weeks, my taste buds are better than they’ve been in a year. I’m eating nearly normal meals again and have been able to cut back on the supplements.

Just a reminder, our blog entry titles (tag lines) are all excerpts from song lyrics. These are intended as a bit of entertainment for Michael and me to come up with apropos items and for our readers to identify songs and artists and let us know via comments, private emails, or conversations. There are no rules and thus no way to “cheat” – we don’t care if you find the answers stored in your brain, online, or elsewhere! We’re just having some fun and hope you are, too.

Time to catch up on some of those tag line identities…
Day +329: We Work the Black Seam, Sting (no one IDed)
Day +343: I Lost on Jeopardy, Weird Al Yankovich – parody of Our Love’s in Jeopardy by Greg Kihn (no one IDed)
Day +351: Silver Threads and Golden Needles, Linda Ronstadt (IDed by Greg)
Day +359: Thank You, Alanis Morrisette (no one IDed)
Day +365: Tubthumping, Chumbawamba (IDed by Leslie, Robb, & Dana)

8 Comments:

  1. GREAT NEWS KAREN! YOU ROCK! Lori

  2. I knew Thank You, but I guess I didn’t comment on that post. I would go and look up this one, but have to get the kids ready for school and me for work. With your white blood cells so low I hope you aren’t getting sick. Congratulations on the 100% donor cells, that’s awesome! Have a great week!

  3. Thanks, Lori!

    Leslie, my whites aren’t so low, running about the usual for this time of month, and I am careful. The neutrophils (ANC) are the main infection fighting component of the whites and they’re in normal range. I’m eager to see where all my counts will go after I’ve been off Vidaza awhile.

  4. Hello Karen;
    I am so deeply sorry you are and have gone through all you have done so.
    Know I pray for you everyday for your total recovery.
    Hugs
    Jan

  5. DNA, you in my heart, you’re in my soul,
    You’ll be my breath should I grow old,
    you are my lover, you’re my best friend,
    You’re in my soul…

    Rod Stewart
    ‘You’re in my Heart’, from the Album Foot Loose and Fancy Free, 1977

  6. It’s great to see you are doing so well. 100% is incredible. I hope you are able to meet your donor someday. She will love you too. And feel so good to have saved you.

    I checked on the song. Hopefully those playing the game don’t look at the comments before they play. Jonathan Coulton-DNA

  7. Great news! God bless!

  8. Your check-up sounds excellent. It is interesting to read about how the GVHD keeps the leukemia at bay. I am very happy for your positive counts. Are you keeping these recorded in a spreadsheet and running charts with them? I’ve been tempted to run an analysis on them that way. Best, and with love.

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