We met with the Medical Oncologist to discuss the chemo side of treatment.
You have to hear this part first, then I’ll share the medical stuff.
We had an appointment with Dr “M” scheduled for next week and kept calling to see if there was a cancellation we could move our appointment up into this week, to no avail. Finally we asked if there were any openings with his partner, Dr. “F” and there was! Not only that, but it was at a time we were available and Michelle was able to get off work a little early to get Stacey off the bus. At the end of the appointment, he prayed with us. Like grabbed our hands and said “let’s pray.” Whoa. Totally feeling the Lord leading us in the messy part of life.
Now for the medical stuff…
Short version… we still don’t have a plan, we still have decision to make and we have a follow up appointment on Thursday.
He started by going over staging. We’ve been told stage 3 so imagine our surprise when he said it’s stage 4 due to the size of the tumor and the mestazation to the lymph nodes. Of course we started to question this so he pulled up a chart of the newest staging methods. It turns out that despite all the above criteria, the lymph nodes are just under the measurement and lowered it to stage 2. So, 3, 4, 2… it doesn’t really matter. It doesn’t change the treatment plan, or the fact that this is still a very responsive cancer so we weren’t fazed in either direction by that. He even chuckled and said next month the criteria will probably change again. He was such a down to earth guy and talked to us like good friends. He showed concern yet confidence.
He explained to us that we have a choice of chemo meds. We didn’t expect to have any say in this, but every appointment has been full of surprises, so why not this one?!
He used artillery to explain why we have a choice. He said to imagine we had a target to eliminate and used a handgun. It would do the job and put a hole in the target and it would be conquered. That is one of the medicines. Studies are showing this lower strength med is effective. Now compare that to using a cannon to take out the target. It would obliterate it. Totally overkill but leaves you with no doubt the target is eliminated. That is the other choice of medicine.
So essentially, Carlos has to choose between a medicine that will most likely do the job with fewer but still difficult side effects, vs. a medicine that might be overkill and also leave him with some even more difficult side effects.
Dr F explained that there are categories that would make him recommend one treatment over the other but Carlos falls in the middle of those categories. As we talked about all the options, risks, benefits, ect, Dr F asked if I work in the medical field. I explained about Stacey and how I love learning about these things. Well that go me in trouble. He said, “great, here is a medical journal you can read and let’s meet Thursday to discuss what you’ve learned and what medicine you choose.” I laughed, thinking he was kidding and I said, “Oh, don’t tempt me, I’ll actually do it!” He said, “ya, I can tell, that’s why I’m going to let you.” He feels confident either medicine will work, but we have to choose which batch of side effects Carlos is willing to live with. There are some I’m not sure *I* want to live with! HA!
He also wanted some time to see if there is a clinical trial he can enroll Carlos in, and he’ll be ready to give us that information Thursday as well.
Once we got home, I opened the link to NCCN and found myself searching through a 218 page document of research findings on the treatment protocols and outcomes. I took three pages of notes, made a list of words I needed to search the meaning and application of, and I made a list of studies that were worth focusing on and those that I could disregard as they had few similarities to Carlos’ case. I spent 7 hours learning about these drugs.
It has now come down to a few concerns.
> The gentler drug is new, only FDA approved since 2011, the stronger one has been used since 1978
> Long term side effects can’t be confirmed in the newer drug
> Long term side effects of the other one are a big bummer, one being permanent hearing loss.
> At the age of 59, how important is your hearing? Your thyroid? Your Teeth? Your heart? Your kidneys? The list of common side effects and complications goes on. I won’t even bother you with the less common side effects, which would be brutal to experience.
On a lighter note, not all side effects are harsh, some are sort of funny, like this one… ” your eyelashes may grow very fast, become very long and bother your eyes. Speak to your provider about how to best manage this side effect. The hair on your head may become curly, fine or brittle.”
As for short term side effects, both would be challenging, but knowing it’s short term would make it tolerable. The hardest part is that one of them carries the same common side effects as the radiation does, so that means the pain in the throat would be worse, the sores in the mouth, the skin conditions, the dry mouth due to damage of the salivary glands, would all be worse and last longer.
All along this journey for Carlos I have had my ideas of what I’d want if it were me, but I hold that from him until I see he has made a choice and we can move forward. This one though, man, I have no idea what I would do. The thought of him going through this constantly brings me to tears.
We put a call in for a second opinion from another Medical Oncologist. We hope to bring light to something we have missed, some reasoning we have not considered, some glaring consequence to choosing one over the other. The decision is not made yet so please pray with us about this.
In other news… After this appointment we went to see my parents since we were down in their area. My mom is on week 3 of being home from her massive stroke in October. From total paralysis on her left side, to being able to use a walker is miraculous. She’s very unsteady but keeps working to build strength and regain coordination. It was refreshing to just enjoy their company. I cannot tell you what a blessing it was to come home and be able to dive right into research because someone had dropped off dinner just before we got home. I am so grateful!
If you could pray for one more issue… I am so frustrated with the insurance fiasco. Thankfully Carlos’ insurance is intact. but the kids are not. I’ve filed an appeal. However, the more we dig, the more problems arise. Way too much to explain here and way too much of my time is being spent on hold and re-explaining the whole thing to be told I need to call someone else.
Carlos seems to get very worn out by these long appointments. I’ve noticed a pattern of him having extreme fatigue the day after. Today he dozed until after noon. He did get some puppy snuggles, but couldn’t keep his eyes open for long. He was snoring when I took this picture so I cropped his face so I don’t get in trouble. 😉