IVIG, Lab, and Health Update
Nothing artsy or cool to write today.
Just the facts.
My change to monthly IVIG is getting to be so routine that I forget to update my status. True I still have ITP as evidenced by my giant platelets, but it hardly an issue with my count at 380,000. True also that after a splenectomy the number should be and has been even higher, but it tells me that my bone marrow is producing platelets fast enough to keep pace with the quicker destruction. I still need my ciclosporin and IVIG- that's the bad news, but the good news is that it is working great.
My right eardrum was severely retracted but not red or inflamed when my family doctor took a look. My hearing is affected. My Weber localizes to the right. Check it out. Interesting old school tuning fork test. So nowI am on a pulse of steroids to open it up. It helped, but the rapid taper over 6 days with the Medrol DosePak proved to be too quick for this stubborn problem, so I am staying at 24 mg a day for about 5 days before I start the taper. I am off the Afrin with no rebound, still on Nasonex, never touched the Sudafed, and it was never touched by the 14 days of Augmentin. It is better, but not gone, and I worry it will return when I start my taper. The response to steroid suggests allergies, but nodes and tumors are shrunken by steroids too. If it 's not better soon, I will see an ENT.
The steroids of course shot up my white count, but it was all neutrophils (ANC was 11), so no worries. If fact it is encouraging that my lymphs didn't climb. Another reason to always insist on a differential count when they draw our CBC. My lymphs have shot up dramatically in the past in response to the higher doses on steroids I received for my ITP. Maybe my tumor burden is shrinking.
My few palpable nodes are unchanged. A single "shotty node" in the left supraclavicular area, and the persistent small ones in the axillae. They are not very impressive, and may be residual scarring, but I wish they were gone. I understand the biggest changes in node size with ibrutinib is in the first month of treatment.
My Hgb dropped a bit back into the 12 gram range, but the long term trend is stable. I wish it was climbing, but it's not.
I was so relaxed about my lab, I forgot to check on my chemistries, only to find out the specimen was hemolyzed so nothing to report.
I am in physical therapy for my muscle pains and arthritis and now have more exercises to do everyday. The steroids are helping the knee pain, but the muscles in my right thigh still grab me.
All in all, many minor nagging issues, small worries, but no drama. I will take it. Others have been much less fortunate.
Just the facts.
My change to monthly IVIG is getting to be so routine that I forget to update my status. True I still have ITP as evidenced by my giant platelets, but it hardly an issue with my count at 380,000. True also that after a splenectomy the number should be and has been even higher, but it tells me that my bone marrow is producing platelets fast enough to keep pace with the quicker destruction. I still need my ciclosporin and IVIG- that's the bad news, but the good news is that it is working great.
My right eardrum was severely retracted but not red or inflamed when my family doctor took a look. My hearing is affected. My Weber localizes to the right. Check it out. Interesting old school tuning fork test. So nowI am on a pulse of steroids to open it up. It helped, but the rapid taper over 6 days with the Medrol DosePak proved to be too quick for this stubborn problem, so I am staying at 24 mg a day for about 5 days before I start the taper. I am off the Afrin with no rebound, still on Nasonex, never touched the Sudafed, and it was never touched by the 14 days of Augmentin. It is better, but not gone, and I worry it will return when I start my taper. The response to steroid suggests allergies, but nodes and tumors are shrunken by steroids too. If it 's not better soon, I will see an ENT.
The steroids of course shot up my white count, but it was all neutrophils (ANC was 11), so no worries. If fact it is encouraging that my lymphs didn't climb. Another reason to always insist on a differential count when they draw our CBC. My lymphs have shot up dramatically in the past in response to the higher doses on steroids I received for my ITP. Maybe my tumor burden is shrinking.
My few palpable nodes are unchanged. A single "shotty node" in the left supraclavicular area, and the persistent small ones in the axillae. They are not very impressive, and may be residual scarring, but I wish they were gone. I understand the biggest changes in node size with ibrutinib is in the first month of treatment.
My Hgb dropped a bit back into the 12 gram range, but the long term trend is stable. I wish it was climbing, but it's not.
I was so relaxed about my lab, I forgot to check on my chemistries, only to find out the specimen was hemolyzed so nothing to report.
I am in physical therapy for my muscle pains and arthritis and now have more exercises to do everyday. The steroids are helping the knee pain, but the muscles in my right thigh still grab me.
All in all, many minor nagging issues, small worries, but no drama. I will take it. Others have been much less fortunate.
Labels: Arthritis, ibrutinib, lymph nodes, muscle pains, Serous otitis media, steroids, White count
posted by Brian Koffman at
2:28 AM
1 Comments:
Thanks for the update; and upward news with some backwards steps and speed bumps. Hopefully they will smooth out.
When and if you feel up to it, I think we'd all learn a lot if you could tell us more about what happened to Dr. Deutsch. What can we do to be vigilant about sepsis? Was he in treatment, post-treatment? When you have time.
Thanks,
Helene
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