the incredibile traveling infilitrate
I was back getting x-rays again on Friday because my breathing still hasn’t improved. Dr. S is still convinced I have inflammation from Bleomycin drug damage. “It can take awhile to clear up.”
Let me tell you, when you get winded doing mundane and easy tasks like feeding your fish, the phrase “awhile to clear up” isn’t exactly comforting. The good news is that most Bleomycin damage does clear up. Its rarely a lasting problem.
(As you might imagine, the fish don’t seem to care that I get winded walking over to feed them, so long as they still get fed. I have a tankful of aquatic ingrates.)
I have had so many x-rays and scans in the past six months that the radiologist techs all know me by name. “Oh there’s Jenny — the runner girl with Hodgkin’s who totes around the big impressive-looking books on the Civil War.” That’s sad.
When you go for a x-ray or a scan, you are required to bring a prescription form from the doctor who requested it. Having studied the form I always get from my doctor, I can tell you I have had every scan available that he can request via at least the standard prescription form except for a bone scan and a MRI. That’s sadder.
The last time I presented myself for a x-ray, I didn’t even have to go through registration. Everyone has to go through registration (except perhaps for people who come from the emergency room with potentially ruptured organs — I’m sure they are exempt). They know me so well that the registration people know my insurance group number better than their own phone numbers. That’s probably the saddest.
Anyway, the good news on the x-ray was it showed the right upper lobe infilitrate has cleared.
The bad news was now the infilitrate is located in the lower lobe of the right lung.
Just my luck: I have incredible, migrating pus in my chest.
(Yes, I made the mistake of asking “what is infilitrate”? You guessed it — my doctor said he’s pretty sure its mainly pus. Luckily it wasn’t chemo day or he would have probably been wearing my lunch on his tie. That’s just gross.)
By the way, I’m still on the prednisone. I think it is making a difference. I do feel somewhat better. Interestingly, the prednisone seems to have killed my appetite. Everything I have read or been told says prednisone makes you ravenous. Of course, I have to be weird.
(The one positive about prednisone is it is cheap. You can get a whole month’s worth of the stuff for just $4.00. This month’s bill for Emend, by contrast, will be $1,050.00. Add on some generic Zofran at $720.00 and there’s almost $1800.00 for the month of June on just anti-nausea medication alone. Let’s not forget the Neulasta shots at $33,000 or the Arnasep shots at $24,000 either — those are white and red blood cell boosters. Having cancer is more than a little expensive.)
Tags: ABVD, bleomycin, cancer, chemotherapy, chest x-ray, hematology, Hodgkin's Disease, lungs, oncology
Yep, infiltrate is a fancy word for pus. Hopefully the Prednisone will do its work. Word of caution, though…steroids can suppress your immune system, so be careful in situations with contagious illnesses.
Cancer drugs are very profitable. There’s an urban legend that there is really a cure for cancer, but there is so much money to be made on the drugs to treat it and all the side effects, the cure would be devastating to the world economy.
Interesting, eh? I remember when I heard this when my mom was fighting sarcoma…really pi**ed me off.
Hi Jenny,
Wishing you a return to good health and many miles of enjoyable running in the future. My thoughts and prayers are with you.
Pavlo
Australia
p.s. My God that is an incredible amount of money per month!
Thanks for the well wishes!
The one that really annoys me is Neulasta. Do they REALLY need to be advertising that on TV?
I also wonder when the insurance companies are going to start restricting it. I get a Neulasta shot every time I have chemo even though my WBCs are always good, even sometimes they are high (often they are in the 15s). I probably really DON’T need Neulasta every time and I’m surprised the insurance companies haven’t caught on yet.
You’re WBCs are ok because of the Neulasta. They are likely artifically high because of the prednisone. The risk (and cost) of sepsis and opportunistic infection are more costly than the Neulasta injections.
Right on with what Mark says. It’s better to take the Neulasta then to miss a treatment due to a low count.
Pus, infiltrate, it all sounds so lovely. You’re handling all of it in stride. I will agree that the costs of some of those medications are out of control. But if they make you feel better and help you heal, then of course they’re worth it. At least the prednisone is not too much money.
So when will the infiltrate stop migrating? How does it leave the body? Or do I dare even ask that?
Ahhh!! The Neulasta people got to my blog readers too. Just kidding!
I have heard of people having very severe bone pain from Neulasta. Luckily, all it seems to give ME is a sore arm.
I guess I am just surprised that the insurance companies let them hand out Neulasta so freely when they make getting needed anti-nausea drugs as difficult to get as breaking into Fort Knox. Severe nausea and vomiting can also put you in the hospital.
I *hope* the infilitrate just disappears. I haven’t been coughing it up. I know, too much information. :)
At least no one’s told you there’s no point in trying anything more, as they did us when my husband asked about “the expensive stuff” we’d heard discussed in the waiting room.
If you can afford your meds and they’re helping (as they seem to be), keep on fighting!
Only a sore arm from Neulasta?!? Wow, that was the worst part of my treatments. I was laid out on the couch with a heating pad under my back and doped out on pain meds for the weekend from that stuff. I was constantly sore and taking pain medication from the first time I got that stuff until about a month after I finished. It was necessary, though. I also had high counts with it, but when we tried to go without it, my counts got way too low and we had to delay the next treatment. Be thankful for it.
I have insurance *for now.* I’m kind of worried about what they are going to do with the rate when it comes up for renewal in September. Interestingly, my dad had the same onc and he only got one Neulasta shot. (He had NHL, though, and went thru 6 cycles of CHOP-R)
It is interesting how people get such different side effects from chemo / the other drugs. I’ve been lurking around a Hodge board and nearly everyone there is complaining about weight GAIN. I am so nauseated on Friday thru Sunday that I’ve been losing about a pound every two weeks. Even though I can usually eat well once I get through the treatment weekend, I can’t seem to make up the deficit. Not even prednisone has picked up my appetite.
Dave, FWIW, complaints about severe Neulasta-induced pain are pretty common there.
I think someone else must have gotten MY other side effects and I got their nausea. *urp*