And then some.
Apologies for the delay. I know, for those of you who follow Teresa’s new (public) page on Facebook that I kept saying I’d update here with more detail, but I’ve simply lacked the mental and physical energy needed to write a comprehensive update. If you’re not following it yet, you can find it here. Even if you’re not on FB, you should be able to see posts to the page since it is public. If you get a pop-up asking you to sign-in or register, there should be an option to click “not now”.
To try to simplify things, I’m going to start with her first appointment last week, and run down the schedule by date for you. In the midst of everything going on, know that we were actively trying (us and Dr. M & team) to get Teresa’s insurance to approve the targeted therapy chemo cabozantinib.
BCBS of TN denied it on October 8, October 10, and October 14. That left us with only an external “civil action” available to try to appeal it. Foundation Medicine connected us with an organization they work with for genomic support testing who could help us appeal.
But we didn’t end up needing them. You’ll see why as I go through the past week of events.
This is a long post. There’s a lot of information. Teresa’s situation is still …. not great to put it extremely mildly. But we did get some good news this week.
Wednesday, October 10:
Today was just for labs and an appointment with Dr. Musgrave. Unfortunately, Teresa’s hemoglobin had dropped to 7.6 and Dr. M sent us to the hospital for an emergency transfusion. We never got to see Dr. M. We were told to come back the next morning after Teresa’s radiology appointment, and they’d fit us in. And they’d check Teresa’s blood again to see if she needed another transfusion post-radiology.
Her eGFR (kidney function) had dropped to 71. It’s supposed to be greater than 90. The only time this had happened before was with chemo, particularly gemzar, but she hasn’t been on chemo for over a month.
It wouldn’t be until late Thursday night/early Friday morning that I would start to put the probable pieces together.
So we went to the hospital for her to get a transfusion.
I’m pretty anxious now because she has terribly swollen legs, a very large abdomen (we’re still waiting on the latest CT results for most current size), and a hemoglobin in the 7’s. This is reminding me far too much of last August when a trip for an emergency transfusion turned into emergency surgery.
(Of course, now we desperately want the surgery can’t get anyone to agree to do it.)
She has the transfusion and we go home.
Thursday, October 11:
She has her Interventional Radiology appointment. They drained off about 2 liters of fluid (it was all she could tolerate) and then inserted the PleurX drainage system. You can learn more about it here. (Hers is in her right lung.) The doctor was very nice (as is everyone in Radiology) and it all went very smoothly. She’s dealing with back & side pain from it, and may have that pain for 2-3 more weeks.
From there we go back to the Cancer Center, where we see NP Jennifer. She answers as many of the questions that we had for Dr. M as she can. One of our current biggest concerns is the possibility of cachexia — wasting syndrome. Symptoms include weight loss, muscle loss, a lack of appetite, fatigue, and decreased strength. The only one she definitely doesn’t have is a lack of appetite. But we worry the tumor may be getting most of her nutrients. It can be reversible if caught early, but simply changing the diet isn’t enough to reverse it if the tumor is still taking away what she needs. Her weight is up, but this is clearly a combination of the tumor weight, and the weight of all of the fluid in her legs. In person, it is easy to tell she’s had significant weight loss in her arms, chest, back, and shoulders.
After this appointment, we get lunch and wait for it to be time for her CT. This goes smoothly. At request, the check to see if there’s any fluid in her abdomen. The nurse tells me there’s some, but not enough to bother with doing a paracentesis to drain it.
We head back home. T works on getting enough fluids to flush out the CT contrast. Later that night, she tells me she can’t pee. Hasn’t actually peed all day. She feels like she needs to go, but can’t.
This is what triggered our late night trip to the ER on Thursday night. Our dear friend Sara meets us there and stays with us all night.
Friday, October 12:
Teresa was triaged somewhere between 1am and 2am.
It took 2 tries to get the Foley catheter in, and we suspect this is why there were little blood clots or pieces of tissue in her urine at first. We haven’t seen any in a few days now. One of the nurses who helped took care of Teresa in the ICU last year. She remembered us; we remembered her! So that was really nice!
We actually saw an ER doctor, which seems rare. Usually just nurses (not that we mind, we love nurses – RNs, LPNs, NPs/FNPs – nurses have been fabulous for us). But since a doctor came by I thought I could ask him more questions. Not so much. Did finally convince him to run a CBC and CMP panel.
A good friend of mine was also giving me great suggestions of what to ask for over messenger, which I think is what helped push the doctor to agreeing. He didn’t do everything I asked about, but at least he ran the labs, plus the tested the urine for infection (none).
Her hemoglobin, which was 8.3 Thursday afternoon was now back to 7.6. I’m not sure why I had to push this one, but finally he agreed to give her another transfusion.
It’s amazing Teresa wasn’t more uncomfortable. Very shortly after the catheter was securely in place, they had 1 liter of urine in the bag! That’s 33.8 fluid ounces. For fellow Starbucks fans, for comparison, a Venti is 20 ounces. The Trenta is 31 ounces.
So where’s the connection with not peeing and being anemic? (Or, a lot more anemic than she usually is?)
Her hemoglobin on 9/6/18 was 10.3. By the 26th, it had dropped to 8.6. Low, but not low enough to transfuse. By the 10th it was low enough, at 7.6.
In mid September, she had started noticing she was having a little difficulty peeing. But if she sat long enough, she’d go. And then her legs gradually started swelling, but I assumed that was mostly because the tumor was surely blocking her lymphatic system, just like in August 2017. We’re pretty sure, actually that the leg edema is one of the key reasons Dr. Greene took her into emergency surgery last year. Wish it was a good enough reason now!
Teresa hadn’t complained much about the peeing difficulty so it never got mentioned to any doctors/nurses.
How many of you know that your kidneys produce a hormone called Erythropoietin (EPO)? Guess what it does? Stimulates red blood cell production. Guess what it stops doing if you have kidney disease or damage? Yup.
Unless something changed drastically (we still haven’t seen the CT report – I was hoping I’d have it before updating here), the tumors have never invaded any organs. Most of them (organs) have remained stable this whole time, including her kidneys. The tumor is obstructing the bladder however, and obviously caused urine to backup in the kidneys because the bladder was unable to release. Hence the catheter.
So this fluid retention could certainly have been the reason for the abrupt decline in eGFR. It was 62 in the ER. The doctor said he couldn’t do anything, and that they only refer to nephrology when a patient needs dialysis, which she didn’t. (Nephrology focuses on kidneys.)[Here’s an interesting abstract from 2006 re: bilateral leg swelling + distended bladder, wherein correction of the urinary obstruction brought improvement in leg swelling. https://www.ncbi.nlm.nih.gov/pubmed/17390552
Teresa’s legs are still swollen, but are no longer hard and solid since the catheter has been in place.]
Oh, and Teresa was supposed to start her new chemo on Thursday night (they’d been able to get her a sample bottle), but when I realized we needed to go to the ER, I advised her not to start it. No sense in introducing new variables into the situation. I texted Dr. M to let her know. She wrote me back early Friday morning and agreed with that and said to hold off starting it until her labs were stable.
We were discharged not long after shift change — which resulted in us not leaving with everything we needed, and the new people on the floor sped up her transfusion to get her out faster . .
We were out in the parking lot by the time we realized they didn’t give us anything to empty the catheter into, or any new bags. Sara said she’d follow us back, but stop at CVS to get us something to drain the leg bag into (they’d switched her from a night bag to a leg bag at some point).
The 30 minute trip back was, shall we say, not fun. I’d had no sleep for far too long. I never heard Sara arrive or leave. I still feel like I haven’t caught up on sleep from that night.
I forget if we went back to Roanoke on Friday or Saturday.
Sunday, October 14:
The first Home Health nurse comes to the house to drain fluid through the PleurX system and show us how to use it. We’ve been told someone will be coming a few times a week for 6-8 weeks. Nurse was really nice. Told us another nurse would come Monday to draw labs so we could find out ASAP if she could start her chemo.
She shows us how to work the drain but promises we’ll get instruction multiple times until we’re comfortable.
This is also the day we get the third/final denial for insurance coverage of the targeted chemo. I ask them what it would cost retail, without insurance.
$19,000. NINETEEN THOUSAND DOLLARS.
So… no buying it out-of-pocket, then.
Monday, October 15:
I speak with the case manager for the genomic testing support. They’ve been looking to see if they can get a successful appeal, and have let us know there’s options they can help with if the appeals are exhausted.
On the previous Thursday, I had let Jennifer know about the option of getting the chemo free directly from the manufacturer. We learned about this from the wonderful Oncology RN who is helping us from afar (Teresa Darr, TY!!!!). She had faxed info about it to Dr. Musgrave’s office twice.
Dr. M, via Jennifer, texted to let us know that the CT shows no bowel obstruction, but did show hydroneprosis with bladder surrounded by tumor, and that Teresa can be referred to urology for stent. (Hydroneprosis is basically just excess fluid in the kidney(s) due to a backup of urine. This is now hopefully resolved w/the catheter, but does nothing about the tumor surrounding the bladder issue.)
Everything I’ve read so far about stents indicates they are temporary until obstruction is resolved; usually within 3 months. The obstruction, of course, is the tumor, so now we’re back, again to that problem. Removing or debulking the tumor would resolve numerous issues. *sigh*
Home Health didn’t call by mid-afternoon, so I called. Not on schedule, no idea about labs or anything. Their triage nurse calls back later and leaves a voicemail to tell me they’ll come on Mondays and Thursdays – not asking if this works with our schedule, but telling us that’s when they’ll come…). The labs will get done Thursday. This puts an even longer delay on starting chemo.
Tuesday, October 16:
I receive a call from an unknown 1-800#. So far, these have all been from the insurance denying chemo appeals, but we’ve exhausted them, so it seems unlikely they’re calling back.
Nearly immediately I’m asked for T’s date of birth, so now I’m somewhat suspicious.
After some back and forth, it’s clarified that she’s legitimately calling from the EASE program for Cabometyx (cabozantinib) about providing the drug directly to Teresa, bypassing insurance. Dr. Musgrave’s office had applied that morning.
I receive a patient authorization form to be filled out and then signed by Teresa. We do that and send it back.
A few hours later, I receive this e-mail:
“Teresa has been approved for the patient assistance program with EASE from 10/16/18-10/16/19. She will receive the medication at no cost to her. McKesson Specialty Pharmacy will call you within 24 hours to set up delivery of the medication.”
I never thought it would actually happen.
Thursday, October 18:
Home Health came today. Drained 1 liter off of Teresa’s lungs. Probably could have gotten more but they’re limited to 1 liter at a time to reduce risk of things like a collapsed lung, which is more likely with large volume procedures.
Nurse tells us her visit is the last one; that the insurance only approved 2 visits even though we were explicitly told we’d get 6-8 weeks. But the nurse is trying to get us more since she can see that Teresa needs a lot more help between getting labs done, drainage done, and resolving the edema (or lymphedema) in her legs as best as possible. (The denial letter from the insurance came Friday, that out of 15 visits possible, only 2 were approved because 15 were “not medically necessary for disease of the uterus” . . . so while the home health team may be trying to get more visits approved, I’ll be calling BCBS too to find out exactly what we need to do, and why it was put in as “disease” and not “cancer”.)
McKesson Specialty Pharmacy calls this day too to arrange shipment of the cabozantinib. It’s arrived here by 10:15am, on Friday, October 19th, via FedEx! We received additional chemo education over the phone, including careful explanation of the more severe, rare side effects of this drug. We’re told we will get a welcome kit of sorts with the drug. They don’t just send the chemo, but a booklet and supplies to help with the more common side effects (lozenges for nausea, anti-diarrhea tablets, and lotion for hand-foot syndrome).
You can read about the EASE program here, and it also describes the chemo and side effects.
So now, we’re just waiting on the chemo kit and the okay by Dr. M that Teresa’s labs are stable/good enough for her to start the chemo. Out of all of the chemos T has tried, this one has the best chance of working because it is targeted to a mutation in her tumor, but please keep in mind that does not mean it will work.
I know that this is a LOT of information, so please ask if you have any questions!