Drove myself to St. Luke’s Hospital, Twin Falls leaving in
the dark at 4:45 AM. Only had to stop for one mule deer standing in the road
near Leslie.
Jani left Colorado for Mackay at 7 AM. I was able to follow
her travels on Latitude (an iPhone app).
Had my blood drawn from my Bard Power Port at 7:20 AM and
waited for the results at my 8 AM appointment with Dr. Padavanija.
My white blood cell count in up in the normal range to 6.1
(norms 4.5-11); ANC (absolute neutrophil count) good at 3.93 (norms 1.9-8.8) so
no mask required; hemoglobin low at 8.9 (norms 12-15) so I’ll be getting packed
red cells today; my platelets are MISERABLE at 33 (norms 140-440). I have a blood blister on my inside of my cheek of my mouth.
Dr. Padavanija doesn’t want to replace platelets via
transfusion until mine drop below 20. Unfortunately, platelets only last a few
days in your system after transfusion even if you get a transfusion. She is expecting the new chemo plan to
drop my platelets, and require rescue platelet transfusions.
My medical insurance has approved the new chemo plan of:
- Bendamustine (Treanda) Day 1, 2 of 2
- Aloxi Day 1
- Revlimid 5 mg Days 1-21/28
- Dex 40 mg/weekly, which I will divide to 10 mg every other day.
I will start Bendamustine Day 1 today, 7 May 2013 and Day 2
tomorrow, 8 May 2013. I will start the
Revlimid 5 mg as soon as I get it. I have Revlimid 10 mg capsules at home, so I
will start those every other day until the 5 mg capsules arrive.
They did a manual count of my white cell differential (types
of white blood cells) to make sure I had not developed plasma cell leukemia,
where the plasma cells are not only located in the bone marrow, but have
started growing in the blood. So far, my plasma cells have isolated to just my
bone marrow at 95%. That leaves only 5% normal bone marrow which is NOT functioning that well to produce my normal wbc, hemoglobin, and platelets..
My chem panel results are okay with a normal creatinine at
1.04 (0.52-1.04); BUN high at 23 (norms 7-17); GFR abnormal at 58 indicating
mild kidney failure.
Now that I’m on bendamustine, I will have to drink lots of
fluids to avoid further kidney damage. If the bendamustine works to kill off
some of the 95 % plasma cells, it could do it too fast and dead cells could
accumulate in my kidneys causing kidney failure.
My last m-spike on 23 Apr 2013 was SPIKING at 1.3 (norms 0).
It had been 0.8 on 16 Apr 2013 at the University of Colorado Hospital.
I actually slept in the recliner at St. Luke’s Hospital while I
received my first dose of bendamustine and 1 unit of packed red blood cells. I
was probably SNORING LOUDLY and letting everyone present know that I was asleep!
Again, I am thankful for volunteer blood donors!
Again, I am thankful for volunteer blood donors!
The two social workers at St. Luke's Hospital MSTI came to talk to me
about my end-of-life issues at my request. More paperwork to fill out. My
medical durable power of attorney paperwork filled out at diagnosis (24 May
2011) were done in Colorado and they advised I update to Idaho documents. Those
stupid steroids (dex) make me so emotionally liable and I’m not really! I'm okay
with my decisions and ready when the time arrives. So, ignore any crying I do!
Summary of Chemotherapy Agents I've Had Since Diagnosis 23 Months Ago:
- Revlimid (lenalidomide)
- Velcade (bortezomib)
- Decadron (dexamethasone)
- Thalidomide
- Cisplastin
- Adriamycin
- Cytoxan
- Etoposide
- Carmustine
- Cytarabine
- Melphalan
- Vorinostat (Zolinza)
- Carfilzomib (Kyprolis)
- Pomalidomide (Pomalyst)
- Bendamustine (Treanda)
History of All Blood Transfusions Since Diagnosis May 24 2011
- May 7 2013
- Apr 19 10 2013
- Apr 10 2013
- May 16 2012
- April 2 2012
- Sept 22 2011
- Sept 7 2011
History of All Platelet Transfusions Since Diagnosis May 24 2011
- Platelet Transfusion March 24 2012
- Platelet Transfusion March 27 2012
- Platelet Transfusion March 29 2012
- Platelet Transfusion March 31 2012
- Platelet Transfusion May 20 2012
- Platelet Transfusion May 22 2012
Finished up at St. Luke’s around 2 pm and went to the
pharmacy to pick up my prescriptions and a quick run around Walmart. Was on the road home to Mackay by 3 PM,
arriving at 5:20 PM.
Jani had just arrived from Colorado just prior to 5 PM at Dad's. She
brought both Paco and I Chinese Food from our favorite place in Colorado. I’m
so happy to have her with me! Unfortunately, bendamustine alters your taste
buds (takes the zest out of them) and the Chinese was not as good as I remembered.
Clark and Dianne brought Kemmer home – Clark is so good to
let Kemmer wade and swim Kid’s Creek and clean her up after. Kemmer was also
delighted to have Zoe and Kady arrive.
Two blooms on my apricot tree May 6 2013. Hope for no hard freezes NOW!
Two blooms on my apricot tree May 6 2013. Hope for no hard freezes NOW!
JM you are a brave amazing woman.
ReplyDeleteThank you for your very informative blog.
Very best wishes from a fellow myeloma sufferer in Ireland.
Thanks from Ireland - It really is hard to believe that I am as sick as my bone marrow and blood reveal. Keeping my hopes up that bendamustine kills some of the plasma cells. jm
ReplyDeleteI have the same white lines Inside my cheeks. It is itching on the outer side of my face.
ReplyDeleteThank you for sharing.
Can you please inform me on this matter.
What is the white lines for? And what treatment is rerequired.
I don't want to go see the doctor if I'm not sure what it is.
Thank.you
Xox