On July 26, Teresa started her 2nd cycle of Yondelis. Her CBC was good (as always, some numbers in the low range, like hemoglobin, but not horribly so (10.2 – as a reminder the lowest end of normal is 11.7). In turn, of course, RBC is also low, but not too badly. Her CMP was good. Protein is still a little low but is not off by too much.
Since she had nausea the first week of cycle 1, I asked if she could have Emend this time too, like she did with the Dox/Olara (Aloxi+Emend to help prevent both immediate and delayed nausea). Cycle 1 she just got Aloxi.
Her insurance approved it immediately (within 30 minutes I believe), so she got both drugs. She also has zofran (1 every 8 hours) and compazine (1 every 6 hours) to take at home.
Unfortunately this time, she had Breakthrough Nausea, which is nausea that happens within 5 days of the infusion. And it hindered her ability to eat and drink, which made dehydration a risk. With this chemo, she was told to drink at least 3 liters of fluid a day. She wasn’t getting close to that.
We’re in Roanoke, so a 2 1/2 hour drive down to the cancer center and/or hospital would have been a terrible experience … for both of us. So I double checked and confirmed that Lewis Gale Medical Center (hospital) was in network. Then I called the cancer center and spoke to one a nurse.
Lots of back and forth, so here’s a summary of events:
1. Phenergan gel (to help with nausea) called into CVS.
2. CVS Pharmacist calls me to tell me it’s a compound, which they can’t do. She called it into West Pharmacy in town, as they do compounds, but they can’t take the insurance for this compound because of some licensing restriction and the closest pharmacy that could is in Richmond, VA. (This is not close. We might as well go to Bristol!)
3. CVS pharmacist tells me without insurance West Pharmacist estimates $40-$45 for the dose prescribed, but it might be higher. But that the Rx is written wrong and he can’t do it as ordered.
4. Nurse calls me back while I’m talking to CVS Pharmacist. I explain the situation. She says it’s peculiar because no other pharmacist has had any trouble with the same order, but she’ll call West directly and talk to the pharmacist for me. In the meantime, she has sent orders by fax to Lewis Gale to draw port labs and do fluids if necessary. We can go any time.
5. I update my 3″ 3-ring binder of T’s medical records just in case LG needs anything (medicine list, treatments, etc), and we get ready to go.
6. We stop at West Pharmacy on the way. Pharmacist says no one from the cancer center ever called him and he can’t help me. He does offer phenergan suppositories. I refused.
7. We’re told to go directly to Labs at the Hospital.
8. Labs sends us back to Admissions.
9. Admissions people are fantastic, but it takes forever. The order isn’t right. Something special has to be filled out for port labs so pharmacy can authorize the heparin flush, and so forth. Admissions gives me a form to take back to our cancer center so that Dr. Musgrave can authorize a standing order for pharmacy so that if this happens again in Roanoke, there won’t be any issues.
10. Teresa agrees to have a the labs drawn from a vein and we head back to labs.
11. While we wait on results, I call the Wellmont Triage line and eventually get a nurse who leaves a message for an oncology nurse to get back to me about the gel (West Pharmacy is now closed).
12. Everything goes fairly smoothly until the lab techs panic when her WBC comes back at 48 (normal range is 3.5 – 11.0). We apologize for forgetting to tell them she just received Neulasta and it should be elevated. They are MUCH relieved!
13. We get her labs back. NOT DEHYDRATED!
14. Also, her liver enzymes are considerably elevated, and her kidney function is slightly decreased, but we know from a mid-cycle CBC/CMP we had done in cycle 1, that this happened before. We decide not to worry about it unless we hear otherwise from Wellmont or the numbers are still high on August 16 when she’s due to start Cycle 3.
15. I talked with the oncology nurse as we leave the hospital. She says she’ll see what she can do.
16. Minutes after we’re back at the house, she calls to tell me she found another compounding pharmacy in Roanoke. They close at 7. It’s 6:30, but they promise to fill the order for me. She gives me the name and number. They’re 30 minutes away in Botetourt (north of Roanoke) County. Yikes!
17. I call the pharmacy. They tell me to bring a check so the pharmacist can just hold onto it for the next day. He’ll be having dinner at the deli next door, and will have the script ready for me.
18. And remember how the West Pharmacy estimated a minimum of $40-$5 for it? Still without insurance, I paid $11.69 to Down Home Pharmacy. They’re a family owned pharmacy. Incredibly kind people. I got there at 7:09 and he came over from his table and explained the dosing worked and how to administer it. If you’re in the area and need a compounding pharmacy, I definitely recommend them!
19. One of Dr. Musgrave’s nurses calls me today to let me know they’re not concerned about the liver enzymes since it can very well be from the chemo and not something actually wrong with her liver. (One of the tumors is situated very close to the liver, but so far has not caused any obvious problems.) The Yondelis paperwork from Dana-Farber Cancer Institute specifies that elevated liver tests can happen with this chemo. So we’ll see how it is on the 16th.
Last night the nausea hit the worse point and progressed to vomiting; thankfully short-lived. She’s feeling better today, though still having some nausea, and dizziness if she bends over. We’re really hoping that this will ease off as we head into week 2 of this cycle over the weekend.
If you haven’t checked out Teresa’s blog yet, she’d love it if you did. I’ve set-up multiple ways for you all to leave comments. Hearing from friends and family REALLY lifts her spirits. While her blog does have a summary-timeline, research info, and so forth on it for easy reference, the blog itself is not medical updates like what I share with you here. Several of you said in the past that while you really like getting these updates, you would LOVE to hear from Teresa. The blog is a great way to do that. You can access it at http://teresa.grableronline.com
We know it’s not practical for everyone to visit, but if you can, she really does love getting to see people. Cancer can be very lonely. We both also realize that visiting can seem awkward the first time because cancer is very scary, and maybe you’re not sure what to say? What’s okay to say? If it’s okay to ask questions?
Teresa is letting me post “From the Caregiver” posts on her blog, and I wrote something about this topic, called When a Loved One Has Cancer. It’s based on our own experiences as Teresa struggles with cancer, and also our experiences when we were the ones visiting and/or working with someone struggling with cancer. We hope it will help you see things from another perspective and help you make that decision to visit sooner than later, or if visiting is not feasible at this time, to reach out to her on the phone. Or on Facebook Messenger. (Tip: she’s not super fast with email, so it’s the last option I’d recommend! 😉)
Teresa is very easy to talk to, whether it’s about cancer, childhood memories, or what she’s been watching on TV.
As always, please feel free to ask me questions if you don’t understand something in my updates. You can ask in comments or privately (email, FB message, texting, etc). I will always respond to comment-questions privately, unless I think it’s something everyone would benefit from knowing. In which case I’ll address it in my next post.
CBC = Complete Blood Count
RBC = Red Blood Cells
WBC = White Blood Cells
Dox/Olara = 2nd chemo regimen, made up of Doxorubicin and Olaratumab