On the Road, Again

We received really good news on T’s last labs (1/25/18).

While she’s still anemic, her hemoglobin is 9.5. That is the highest it has been in MONTHS! She did receive a unit of blood the week before that, but up until now, 1 unit would just sustain her to the next week, and then her hemoglobin would be back where it was, or lower.

This time, it stayed up! 

Her kidney function is also back where it’s supposed to be!

With the first chemo (gem/tax), she took her at-home nausea medicine (Zofran) maybe 3-4 times over an entire 9 weeks.

With the second chemo (dox/olara), she was immediately nauseated the day of chemo. And while mild, it’s been pretty much on-going, along with some not-so-fun heartburn.

The nausea was worse the week she received both (Day 1) as opposed to the week following Day 8 where she received just the olaratumab. And that’s with the fact that on Day 1, she was given a powerful pre-chemo anti-nausea medication, Aloxi + Emend, which is supposed to work 3-5 days, and prevent immediate and delayed nausea.

The heartburn has been worse since Day 8.

We’re really hoping the nausea doesn’t get worse after Day 1 of Cycle 2 (February 8)!

Thankfully, Zofran works pretty well for her. She’s been prescribed compazine too, but hasn’t needed it yet. (And, as many of you know, her favorite drink, milk, is an excellent heartburn treatment for her!)


As I mentioned in the last post, Dr. Musgrave is trying to get an internal referral to Dr. Singer at MSKCC, but it’s s l o w going. And I’m not keen on waiting around for anything about T’s health, so I applied for an appointment at another NY hospital with a sarcoma center: Roswell Park Comprehensive Cancer Center in Buffalo, NY. (T’s insurance says they’re in-network, and I sent a copy of the insurance card in for them to verify. They told me they always check to make sure the patient doesn’t get a surprise.)

She is scheduled for February 23, 2018. I’m just waiting on the chemo flowsheets from Dr. Musgrave/Dr. Musgrave’s nurse (spreadsheets which list dates and dosages of all chemo) to send up; I’ve already sent the Pathology reports, and they have all other documents. They should be getting slides and/or paraffin blocks of the tumor soon too, now that they have the Pathology reports.

I’ve read in so many places that doctors really need a patient to have at least 2 chemo cycles completed to tell if the chemo is working. By waiting until the week of the 18th, she will have finished her 2nd cycle of dox/olara. The week of the 18th is her next off week.

So everyone keep your fingers crossed for no lake effect/otherwise heavy snow that week or the next! 🙂

Right now, the surgeon she will see is also saying no to surgery, but as in, “not at this time”.  He wants to see the tumor shrink more first (this would definitely make surgery safer), and from what we’ve been told, because of the way the first surgery was done (completely different than they’d do for sarcoma), it’s made it harder to get clean margins. So they really need the tumor to shrink first to have the best possible surgery.

(Of course, back in August, it was suspected to be carcinoma. No one knew it was sarcoma, much less leiomyosarcoma, and Teresa likely wouldn’t have survived long enough for a second opinion. So now, we just need to get things on the best track possible for going forward.)

But, the surgeon is still going to meet with us! We’ll be seeing Dr. John Kane, III (surgeon), and Dr. Anne Grand’Maison (medical oncologist). 

Dr. Musgrave is a medical oncologist, so I had initially questioned why they wanted us to see theirs, but Dr. Grand’Maison is sarcoma specialist (as is the surgeon), which makes a big difference.

We may also be meeting with a radiologist and pathologist.

At Roswell, they present patient cases to the tumor board to come up with the most optimal treatment plan for the person. Patients treated at sarcoma centers, or who have their treatment directed by a sarcoma center, are said to have much better outcomes than those who go a cancer center that doesn’t see many cases like theirs. Read more here: http://sarcomahelp.org/sarcoma-centers.html


From Teresa:

I want to thank all of you who have donated and/or shared the link to my fundraiser. It really helps a lot. We’re just a little under $1000 from reaching the halfway point of my first goal!

I do want to clarify a few things based on some questions we’ve received, so I’ve added an explanation  on my website about having a fundraiser vs applying for assistance, exactly why I could lose my insurance after February 23, and so forth. Some people also wanted to donate via Google Wallet, so Amanda looked into that for me. That info is on this page too. You can find it here: http://teresa.grableronline.com/help-me/

Also, if you go to http://teresa.grableronline.com/ you can read posts from me as I’m able to write them, see my timeline, and more. My first post about how I’m actually doing is now available. You can find it under “Recent Posts” and/or on the Blog page – access this by using the site’s menu. The post title is today’s date (Feb 2).

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