Not Good News – The first of much to come

I’m writing this update from Bristol Regional Medical Center.

We were scheduled to see Dr. Musgrave today, but we never got to. When she saw Teresa’s CBC, her nurse Cathy came to tell us we were to go to the hospital immediately for a transfusion. Her hemoglobin is 7.6. (The lowest normal number is 11.5.)

Although her Blood Pressure is good at 115/74, we’re very much back at ground zero of last August where she desperately needed surgery. Do you know anyone who WOULD be able to help us? None of the surgeons we’ve seen so far are willing (which eliminates MSKCC, Dana-Farber, and Roswell Park as options).

  • Her pain is 9/10.
  • She is a fall risk.
  • Her abdomen is very distended. (As of 8/31 her primary tumor was at 30.3cm. The next largest, which is on both sides of her liver, was 16cm.)
  • Her legs and feet are extremely swollen. 
  • She has 3 gastric hernias which right now are not a risk, but if they suddenly become one (which can happen fast), i.e. her intestines get strangulated in one, she will need IMMEDIATE surgery. It would be so much better if a surgeon skilled in cancer, gynecology, or, even better, sarcoma, would operate before that point happens. Can anyone help us?

These are all things she had last year when Dr. Greene said she was decompensating fast. One other difference, a good one, is that her appetite is still GREAT. She wants to eat and, unlike August 2017, can eat plenty! So her stomach is (somehow) not compromised (squashed).

Tomorrow morning she gets a pleural catheter put in her right lung. She will also get the fluid on her right lung drained off.  The catheter means we will be able to drain up to 1 liter at a time at home. Radiology will teach me how to do it, and she will get home healthcare next week. 

The swelling in her legs is most likely lymphedema. I’m sure that it is the tumor blocking the lymphatic system from draining properly. Untreated this can have painful consequences. 

She is on furosemide (Lasix) to help reduce fluid, and I talked to her cardiologist’s nurse over the phone yesterday about increasing the amount she’s on (20mg). He agreed to increase it to 40mg and prescribed potassium too (this time in a powder instead of those monstrously sized pills, as she is having trouble swallowing the big pills these days). 

We will pick that up tomorrow. 

The catheter procedure is at 8am tomorrow; we check-in at 7:30am. (groan)

We will go see Dr. M after that procedure and before the CT later that day. She will get her hemoglobin levels checked again to see if she needs another transfusion because of the procedure.

At 3:00pm (checking in at 2:30pm) tomorrow, she will have a baseline CT before starting the next chemo. . . . 

Which we’re still trying to get approved as medically necessary. The insurance has denied it twice. Dr. M. said they had a 1 month supply to get her started. I’m hoping that if it does well for her, that can be some of the supporting evidence. 

This chemo (cabozantinib) is technically not indicated for use in LMS, but it is an FDA approved therapy for other cancers. 

It is recommended for Teresa because of the mutation in her tumor (MET) that this chemo targets. 

I know it is in trials (past and current) for LMS, but because of everything she has going on, getting her to a clinical trial site will be difficult at best. 

If anyone with access to scientific/medical journals finds something supporting the use of this chemo in sarcoma, and especially LMS, please send them my way! 

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