I apologize for not updating sooner. It’s always a lot to take in and I want to be sure I have everything organized in my head so I can share it properly with you all.
CHEMOTHERAPY, SESSION ONE:
As you know, she had her port surgery last Friday. On Monday, we had chemo education, which was very helpful. With the research I’ve done, I knew almost everything we were told, but hearing it from a chemo nurse was certainly reassuring. We also learned a few totally new things.
While we do not have a precise number of chemo cycles nailed down, we do have a better idea. Dr. Musgrave wants to do several cycles and then reevaluate. Teresa will be having CT scans every 3 months, and this is part of the way she’ll be able to decide what direction to go in, how many cycles to have, and so forth. And, of course, blood work is done at every session.
Unless something changes, Teresa will probably have about 6 cycles, but since she goes for treatment twice during a cycle, it will feel like 12 for us.
She will have Gemcitibine (gemzar) on day 1 every 21 days.
She will have Gemcitibine and Taxotere (docetaxel) on day 8, every 21 days.
She will have Neulasta on day 9 of every cycle (21 days).
Gemzar and docetaxel are the actual chemotherapy drugs. Neulasta is a shot given to stimulate bone marrow production, since gemzar and docetaxel, especially the latter, are likely to drop Teresa’s WBC.
We do not have to have a second office visit in each second week to get the shot, however. Teresa will have a thick patch (it looks like a box of dental floss on top of a patch) applied at the end of day 8. 27 hours later, it will administer a sub-q shot over 45 minutes, and then the patch can be removed. (They’ve sent us a Sharps container for this.) You can read about Neulasta and the Onpro Body Injector here.
Neulasta has some unpleasant side effects, but our nurse tells us the only one she has *ever* seen is the bone pain. But that one can be pretty bad on its own. From what I’ve read, it sounds like quick onset temporary arthritis. But having your WBC too low could be worse (ex: an infection that might be little trouble to us could quickly become septic for Teresa).
She did really well with the gemzar (and her pre-chemo drug cocktail). So far, she has not needed any of the prescribed anti-nausea medicine. Gemzar is supposed to be really low down the list for nausea.
Docetaxel is also low but is higher than gemzar. Docetaxel has a higher chance of (allergic) reaction, fluid retention, etc, so on Monday, Tuesday, and Wednesday of the second week of the cycle, she’ll be taking Dexamethasone (steroid) twice daily.
Docetaxel is also the one more likely to cause hair loss. But, like all side effects, it doesn’t happen for everyone, but we have been given a lot of really helpful info (both from the cancer center and friends/family) for if it does.
The third week of her cycle, she will not take any medicines except for Claritin* and Zantac, which will help fight any bone pain she gets from the Neulasta.
Nadir = low point. In chemo, this is used to refer to the time when WBC and platelets are at their lowest point after treatment. For taxotere, this is 5-9 days (with an onset of 4-7 days); gemzar has no noted onset and happens within 10-14 days. You can read more about nadir here: What is Nadir?
This is the CT that was done on Monday, October 9.
Lymph nodes, No axillary, hilar, or mediastinal lymphadenopathy.
Heart/vascular, No cardiomegaly. No pericardial effusion. Unremarkable great vessels.
Mediastinum, No other significant abnormality.
Lungs, small right pleural effusion is present.*
Adrenal glands, unremarkable.
Vascular, no significant vascular abnormality.
No enlarged lymph nodes, free fluid, or free air.
Stomach and small bowel are unremarkable.
Bowel, colonic diverticula are present with no significant abnormality.
No significant osseous** abnormality.
* Same pleural effusion as before, but the scan results we’ve been receiving have continued to indicate that it is diminishing. This was the first CT we’ve had done at the Imaging Center in Bristol, TN.
** Relates to bones.
Can Teresa still have visitors? Yes**.
But, we do have to be careful. If you feel at all sick, even if you are already on the road, please do not come. Please send us a message and let us know. We’ll be VERY understanding and reschedule with you for a better time!
Teresa may wear a face mask when you come, even if you’re feeling fine. Please do not be offended by this. It is for her safety. This will be especially true depending on what point of the cycle she’s in, and possibly, what your job is. Or if you have young children. If you’ve recently had a vaccine, especially a live one (includes oral and nasal), please do not visit for a minimum of 6 weeks. Risk time for vaccines vary from vaccine to vaccine. To play it safe, we’re going to set it at a minimum of 6 weeks for all of them unless we learn something different from her oncologist or nurse.
If you visit, and after the fact feel like you might be getting sick, or discover someone you saw before visiting Teresa is now sick, etc., please let me know immediately so that we can let Teresa’s oncologist know right away. This is very important!
Teresa may have to cancel on you, even if you’re already on the road. Please know that it absolutely doesn’t mean she doesn’t want to see you. But if she starts getting super fatigued, starts having nausea, or other hard to manage symptoms, she may simply not be up for company, and please know that this could happen very suddenly. Remember, we’re learning as we go as well!
Also, please do not do surprise visits for obvious reasons! (She may not be up for visitors or we may have returned to Bristol for the next session, or may not have returned from Bristol yet.)
All that said, visitors are awesome. If you want to visit, but you have questions and/or concerns, if you want to bring something but you’re not sure what, or anything else, please e-mail me at email@example.com so we can work things out for you ahead of time, and I will do whatever I can to make it a good visit for you and for Teresa. 🙂
Some of you have asked about costs with all the treatments. When I posted briefly about this before, I said that we’d only seen a few bills thus far and they hadn’t been bad. That was, of course, pre chemo, and… pre a lot of other things.
We’ve met one insurance deductible, so we’re not paying for things like office visit co-pays, as long as they’re in network, but we have a second in-network out of pocket deductible we still have yet to meet — by about $3600. So for anything that falls under that benefit, we’re paying 10%, insurance pays 90%. For example, for the required CT scans, the cost to us is about $114/scan.
The Neulasta, per shot, is billed at $16,000. Yes, you read that right. Sixteen thousand. Per shot.
Without any insurance, 6 of them will be more than what I had in graduate loans before I qualified to have them discharged. Medical care, especially for cancer, is utterly ridiculous.
We did get a letter from BCBS that they approved the Neulasta, but we will not know until November 3 how much they will actually pick-up of that 16K.
On Tuesday, we worked with a financial aid counselor. We filled out two forms — one of which was just for the Neulasta! She quoted us $948 as the cost per session (for all the drugs including the shot in the second week of each cycle). She said it is one of the lower quotes they’ve given people. But once the billing processes through (Nov 3), it could be less… but it could also be more.
Once we meet that $5000 deductible, then insurance pays 100%. Until the insurance calendar year resets. Then we’re back at zero.
So, until Tuesday, we’d been waffling on setting up a Go Fund Me account, but, sadly, now, don’t be surprised if we post a link to one sooner than later. Some of the billing offices we’re working with are marking bills as “outstanding” within 24-48 hours. We don’t want to have bills go to Collection, and at the same time, we need to be sure we can pay our regular bills too!
We ended up using a different site because of issues with GFM, but that site was bought by GFM in 2017, so now she just has the ability to accept donations via PayPal and Google Wallet.
So, that’s everything I can think of now. I will probably post again next Wednesday or Thursday. We are staying at home in Abingdon for the night before and night of each treatment. (If she does have a reaction that needs to be treated on site, I’d much rather only have to drive her 20-25 minutes than 2 1/2 hours!)
** If you need the Roanoke address to send cards or to visit, please send me an e-mail. If you want a phone number so you can call Teresa, please send me an e-mail. I will not be posting either of those online.
I do read all of your comments to Teresa, but she would really love to hear from her family and friends directly. We understand that it may not be possible for some of you to visit during the school year, but please don’t hesitate to ask for a phone number and call! 🙂
Note: After many types of chemo, Teresa decided the Claritin wasn’t worth it. It dried out her nose so much, that hurt worse than the Neulasta! We asked one of the nurses and she told us that Teresa could really use any antihistamine-allergy pill, so if she needed something beyond the Zantac, she took Chlor-Trimeton (it’s 4 hours not 24, but way less drying).