So, a lot has happened over the last 18 days (last post 8/1/18).
For those of you who don’t know, Teresa was employed by K-VA-T Food Stores, Inc., when she got sick last year. She’s been with them since May of 2000. She worked at the Help Desk in the Corporate Office, in Abingdon, VA, since October 2003. K-VA-T held her job for 1 year to see if she would recover from an incurable cancer and become NED (No Evidence of Disease; as opposed to remission in other cancers). It is not an impossibility; we know many LMS survivors who have been stable for years. Unfortunately, Teresa has not reached that point yet. The first 6 months she was on short term disability from work, and received 60% of her regular pay. That ended around February 25th.
Then she could take 2 90-day periods of unpaid leave, but her insurance would have to be paid at full cost out-of-pocket and upfront of each 90-day period. We were told this covered medical, life, and dental. With 2 weeks left to go this month, we found that the eye insurance policy was still active. If you’re being treated for cancer, make sure you have eye insurance. Steroids, especially if you’re on them long-term, can put you at risk for developing cataracts. But we learned that from a friend of mine who ran into this problem while taking steroids for another issue. Not from the cancer center. And I don’t remember reading anything about it any of the “Things I wish I knew before chemo” posts we’ve read either.
So… hopefully none of you will need it, but if you’re taking steroids, get your eyes checked regularly. I was able to get Teresa an eye exam last week and besides needing new glasses, the doctor said her eyes are fine! (Phew!)
Anyhow, so with August 25th looming on the horizon, we had to make a decision about if we thought she would be able to go back to work or not. (We actually started thinking about this well ahead of time in June, but have been discussing it mostly privately with people who have SSI/SSDI experience and could advise us best.)
With 2 failed chemos and no certainty about the 3rd, and an aggressive cancer center who declined to operate, we came to the consensus that Teresa would not be able to go back to work come August 25th (Dr. Musgrave would have had to clear her too).
Not going back to work would mean Teresa would have to be able to afford COBRA to keep her insurance, and from personal experience, I knew COBRA can be ridiculously expensive. We still don’t know how much it will run. When her end-date with K-VA-T syncs into BCBS of TN’s system, the insurance company will generate the COBRA papers to go out. We expect to receive them some time the last week of August.
With no income since February, and no chance of returning to work, we started to apply for SSDI. T’s good friend Maria helped us initially. She tried to file online, but that wasn’t an option for Teresa’s situation, and we got a phone appointment. (And you all know how much I love the phone!)
Shortly after that, we had a visit from Teresa’s PCP and she advised having the SSDI interview in person so that they could actually see how Teresa looked. Her abdomen was becoming quite distended (this was early July) and unfortunately, it has just grown larger since.
I got our phone interview switched to in-person. This meant we wouldn’t have the interview until Monday, August 6, but it seemed worth the delay.
We worked with an extremely nice woman at SSA to get everything filed for Teresa. She was approved within 3 days — and has already received her back pay. The first 5 months don’t count, so she became eligible for pay starting in February, and she will see her first monthly check in September.
On Tuesday, July 7th, we met with Teresa’s supervisor at K-VA-T, and an HR Specialist, to confirm that Teresa would not be returning to work, and to find out what we needed to do to have the transition of leaving be as smooth as possible, to find out what policies could be rolled into individual ones, learn about how we got the COBRA paperwork (as mentioned above), and so forth.
On Wednesday, August 15th, Teresa had an echo to check how her heart is doing, primarily her ejection fraction (how much blood is pumped out of the left ventricle with each beat), as Yondelis is another cardiotoxic chemo.
When T had her first echo, her EF was 55%. Now it is 59%. The toprol she is taking may be a factor in the improved number. As long as the EF stays between 55 and 70%, she’s good in that regard.
On Thursday, we went to the Cancer Center. Her labs were fine for starting Cycle 3 of chemo, but Dr. Musgrave noted that T had decreased breath sounds on her right side again. T told me she’d just started to notice the night before that it was hard to breathe if she rolled onto her left side — a sure sign to her there was another pleural effusion. But she hadn’t really been having trouble breathing, so it couldn’t be as bad as before (3.1 liters) right?
Nope. But it could be worse. 😔
Dr. Musgrave arranged for us to go over to the hospital to radiology to have a thoracentesis first, and then come back for chemo.
They took out 3.3 liters, making Teresa 7.6lbs lighter than she was that morning.
This is what is called a large-volume thoracentesis. They probably could have gotten more but T was coughing a lot by that point. There is risk, as any of you in the medical field know, about removing a LOT of fluid in one ago and the risk of re-expansion pulmonary edema . . although it could also be said that 1 large draw would be safer than multiple small draws. So….
In any case, her breathing has become substantially better and she can see the difference on the incentive spirometer. She also saw an immediate difference with her pulse ox. I want to get a pulse oximeter for home use to have another way to keep tabs on future pleural effusions. Can anyone recommend a good brand? (I’m particularly interested in ones which will sync up with an app to keep accurate logs.)
A sample of the pleural fluid was also sent to cytology. We’re still waiting on the results.
Then we went back to the cancer center for her chemo. Dr. Musgrave wrote her a 3-day prescription of dexamethasone (steroid) to try to help boost the staying power of the anti-nausea meds Aloxi+Emend. Sunday was her first day of breakthrough nausea in Cycle 2, so we’ll see how things go (fingers crossed!).
Next week, on Wednesday the 22nd, we’ll take a day trip down to see her cardiologist, Dr. Fernandez, to follow-up on the echo. In our last visit with him, he prescribed furosemide (Lasix) as needed to see if it would help with fluid build up. I’m going to ask about him prescribing it as daily or every other day, since usually by the time T realizes she’s having build up, it’s already large enough to warrant a thoracentesis. (And the less times she has to have a catheter and tubing in between her ribs, the better.)
Many of you have asked about her next CT — the moment of truth scans which will tell us if the Yondelis is working or not. Dr. Musgrave wanted to get it done as close as possible to Cycle 4 to give this cycle as much time as possible to work. But the closest we could get an appointment is August 31. Because T has to be pre-medicated for the CT (due to a contrast dye reaction), she can only have it done in the hospital (not the imaging center), which reduces the number of available dates for testing.
We’ll go down on the 30th and come back up on the 31st after the CT.
And then we’ll return again on the 5th, unless Dr. Musgrave texts or calls to let us know we need to come down sooner — this has happened before when a previous CT showed progressive disease.
In the midst of all of this, we finally got the results back for Foundation Medicine. Rather, I got them because I called on the day I’d estimated we’d get them back after the last delay, when nothing showed up in my email. I’m told they were sent, but they sent them again – I got the second one. They never sent anything to Dr. Musgrave! So I sent her the results instead.
This test was to find out if her original tumor had any genetic mutations which were associated with targeted therapy drugs.
Teresa’s tumor tested positive for 5 genetic mutations. With zero available FDA-approved options for leiomyosarcoma.
One of the 5 mutations had 2 FDA-approved options for another tumor type, and then 8 clinical trial options were given for that mutation.
If you’re curious, the mutation is MET D1010E:
Gene and Alteration: MET encodes a receptor tyrosine kinase, also known as c-MET or hepatocyte growth factor receptor (HGFR), that is activated by the ligand HGF; MET activation results in signaling mediated partly by the RAS-RAF-MAPK and PI3K pathways to promote proliferation1,2. Alterations such as seen here have not been functionally characterized and are of unclear significance. However, similar alterations have been reported in the context of cancer, which may indicate biological relevance. Multiple MET activating alterations have exhibited clinical sensitivity to a variety of MET inhibitors in multiple cancer types 3,4,5,6,6,7,8,9,10,11,12.
Frequency and Prognosis: MET amplification has been reported in 2% of sarcoma cases in theMSKCC/Broad dataset13. MET amplification has also been reported in 20% of malignant peripheral nerve sheath tumors (MPNST)14.
There’s a lot more information about this mutation, but I’m sure it won’t mean anything to most of you. If you’re in the medical field and interested to read her report and give me your thoughts, please let me know!
The two FDA-approved therapies listed for other types of cancer are called: Crizotinib and Cabozantinib. If I remember correctly, Dr. Musgrave sounded more interested in the Cabozantinib.
An earlier, short report from Foundation said that T’s tumor is completely negative for PDL/PDL1 making her unlikely to respond to immunotherapy drugs like Keytruda, but that PDL/PDL1 can be an inaccurate bio-marker and I’ve read reports about people being negative for the marker but still responding well to Keytruda…
Of course, we’re hoping that the Yondelis will be the third time’s the charm drug and she won’t need a clinical trial.
After I got the report, I emailed Dr. Nathenson (Boston, Dana Farber Cancer Institute) and asked if I could send him the report for his insight. He agreed. I sent it along with some questions. He called and discussed it with me for 10-15 minutes, told me I had good questions, and answered/explained several things.
He said while it’s unlikely that Teresa is carrying any of the genetic mutations herself (probably just in the tumor), it’s not 100% impossible and a genetic counselor could help with testing Teresa. Dr. Musgrave is referring us to someone in Kingsport, TN.
Also, cancer is a clonal disease. Therefore, the tumor(s) will always retain the original mutations that caused the disease to happen in the first place, but the regrowth and any new tumors could develop other mutations (which may or may not be targetable). But unless we can get someone to operate, there’s no way to test the regrowth or the new tumor and nodules for mutations because a biopsy on LMS could be just as risky for spreading tumor bits (by penetrating the fragile outer layer) as a surgery that doesn’t remove the tumor intact).
I think that’s everything we’ve been dealing with.
I know it is a LOT of information. And honestly, there’s probably more that I’m forgetting.
If you have any questions about anything, ask!
If you’re in a medical field and want to read her Foundation One report and get back to me on any insights, please ask!
There are no silly questions. This is a lot of information to process, especially for those of you who haven’t gone through something like this. If you don’t want to ask something in a comment for everyone to see, please feel free to send me a private message via CB, in regular email, or in PM on Facebook. Or text me if you have our phone number. I’ll get back to you as soon as possible.
In non-medical news, Teresa is working, albeit slowly, on a post on her own site about things she enjoys doing since some of you have been wondering. 🙂