Back in the IV Chair - long days
I can't believe it's been almost a year since I was here at Memorial Hospital North for Belinostat. Now we are trying Romedepsin. It is a 4 hour IV but I got here at 9:00am (the scheduled time) but it is almost 11:00 and they are just starting the actual med. The first access the port, do a steroid IV to reduce reactions (Doxi), then a small amount of saline, and the hospital doesn't prepare the meds until the patient is here and checked out. I expect to be here until about 4. I love how they tell you it's a 4 hour IV but it actually takes double that.
Apparently I should have had an IV before today but no one told me. They look for a change in the IV to monitor side effects.
The things I hope will improve.
1) Reduce the swelling in my throat. It has gotten pretty bad. My uvula is constantly stuck to to my left tonsil. I have a terrible time taking pills these days, eating can be tricky, and trying to go to sleep when I feel like I'm choking can be tough.
2) The lymph nodes on the sides and base of my neck are very much larger. These are considered tumors and need to shrink again.
3) I hope to reduce the Prednisone I take. I plan to start reducing by 1/2 mg at a time, very slowly. I have stopped gaining weight rapidly the way I was but I've gone from a size 4 to a size 12 in the last few months.
4) I have strange bumps on the back of my arms down to my elbows. They are kind of large and raised and can hurt when I scratch them. It looked better to day but it comes and goes. They look like clear raised small boils.
5) I still get purple rashes on my thighs that come and go. It can be raised and hurt if I scratch it.
6) I feel my stamina has diminished greatly. I know I haven't been exercising the way I could but I've been trying to walk again and increase it gradually. I really pay for it when I overdo it with fatigue and sometimes I just have to go take a nap.
I essentially take:
Thyroid meds in am
B12 spray
During the day:
Shaklee Nutriferon
Probiotics
LiverLove by Barlow Herbal
Quercetin
Zinc
Prednisone
Nightly:
Lomatium
Vitamin D3
Quad Cannabis
If the Romedepsin doesn't work, we should then be able to try the Duvilisib/Copektra that Dr. Shustov in Seattle suggested almost a year ago. He claims a 70% remission rate, which is unbelievable but I trust him so... We shall see.
Hugs!
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