~

~

Sunday, January 16, 2011

Bisphosphinate Follow-Up (& some tamoxifen)

Survivor follow up stuff does drag on a bit. I'm still in treatment -- not active treatment, you understand, not chemo -- but I take tamoxifen -- a pill once daily for 5 years. It's simple to take it, but the side effects have a much bigger impact on my life than I had expected.

It's the hot flashes -- I started getting them on chemo but they got serious on tamoxifen -- every half hour I'm awake, and they wake me in the night. Used to be every 2 hours, which made it really hard to get a decent night's sleep..... That's much better now with melatonin, which never did anything for me before -- and of course in a pinch there's ambien. You know, I can do anything if it's just for a few months, or even a year at the outside.....but I've been on this tamoxifen for almost 2 years (2/9) and three left to go. Course after that I take an aromatase inhibitor for 2-3 years (I forget) and that has more side effects..... but hopefully not this particular one.)

And then there's the bisphosphinate -- an osteopororis drug, which is being shown to prevent bone metastases in breast cancer survivors -- at least SOME bone metastases in SOME cancer survivors. That has some serious risks and I had teeth removed in order to avoid the scariest one. But I've had awful GI side effects from the two oral bisphosphinates I've tried, and hope to be starting on an intravenous one in a week or so. It will make me sick for a few days probably, but just achy and flulike -- should be fine on the gut since it doesn't go THROUGH the gut.

I started taking fosamax in October 2009. I took it weekly for, hmmm, maybe 7 months before I realized that I was getting GI ailments more than everyone else in the house.... so I discontinued for some weeks and then started again. This was decided in consultation with the nurses at my oncologist's office. I was wondering if it had to do with taking too much vitamin D as well, but the next time I went to see the onc my D was still low-normal (40) same as before -- so he said to double what I was taking (2g/day instead of 1) and stop the fosamax for awhile. In the end I stopped the fosamax completely last summer and waited awhile before doing anything.

I couldn't get in touch with my onc -- I made the mistake of trying to get in touch with HIM rather than the nurses. (I've done that before, and it didn't work then either. SOmetimes I just want his opinion and don't want to go through a middleman.) Last summer I sent email to his secretary, who printed it and gave it to him (she emailed me when she did)and I actually sent him a SNAILMAIL note. GAWD I wish he'd do email! I have two other doctors who do email, thank goodness -- the radiation onc from Georgetown (course my question has to be somewhat radiation related to justify emailing him) and the miraculous one, my onc from the Mayo in Minnesota, who I haven't seen since my surgery in October 2009. I have no plans to go back there and he gets no money for helping me but he always answers my emails promptly (even on SUNDAYS!) and usually with just the information I'm looking for. I should send him something sometime -- a card, a present. (I always get this grateful impulses, but unfortunately my attention span is such that they always pass before I can act on them. I wanted to send something to my Mayo surgeon too.)

Anyway back to the bisphosphinates -- I got a prescription for Boniva in October 2010, and filled it. I was bummed because there was a $150 copayment for a 3 month supply -- which is 3 pills, one monthly. I wish I'd called the doc for a ONE month dose instead when that happened because I'm not going to end up taking the other 2 and so that's $100 down the tubes. (I'll bring the unopened pills to the office so hopefully they can give them out to women who are starting out.....if only I had a place like SECHC to give them too, where the people who came there really needed the $ help.) When I took the boniva I felt fluey that first day -- and maybe a little bit the 2nd day. I remember thinking that if I'd realized that might happen after the first pill I took I would have taken it when Alan was home. (I took it on a Sunday but he was out of town.) Anyway I was a bit bummed about the idea of being sick for a day or 2 a month. It was going to be on a schedule, but I figured I could maybe change it by a day or so if need be. However..... that turned out not to be the end of it.

After I got over the fluey feeling, I was nauseous and dizzy/shaky on and off for the next 10 days. The shakiness was like low blood sugar but eating didn't fix it. (This was the same thing that had happened in the spring/summer, which it had taken me awhile to connect w/the fosamax -- since I'd been on it for months.) Then the FOLLOWING 10 days I was extremely gassy. I was tired, too -- but didn't figure that out til a good month later when the tiredness lifted. (I'm now thinking that the tiredness I had last spring/summer was probably from the fosamax -- see blog post from 6/25/10.) In fact the tiredness is still lifting -- I'm better and better and better! HOwever....I've been unmedicated for bone density since November. I was tempted to just blow off the bisphosphinates altogether -- but then Elizabeth Edwards died.

She'd been diagnosed with stage 3 cancer in her 40s, gotten better with treatment, and then died of bone metastases at age 61. Well that's lots older than I am now, but still -- if bisphosphinates would have made the difference between what happened to her and a longer life, I'd be a fool to pass them up. (They're only newly discovered to work against breast cancer bone metastases in the last.... 3 years? Maybe 5 at the outside?) I mean maybe they wouldn't have made the difference for her.... maybe she tried them in her last few years. But I can try them as a preventive -- that's new.

SO I'm going to try an IV bisphosphinate -- reclast (zometa.) I have to see my GI doctor first, though I'm not sure why. Both the insurance woman at the onc's office and the onc want me to see her. I've had trouble getting IN to see her but have an appt. for Friday -- followed by an appt. to get the infusion (zometa) at the onc's office later same day, which I will change if the GI doc orders tests. I rather think she'll listed to what I have to say and say "Okay, so don't take them!" The reclast will not likely be covered by my insurance, though I have tried the oral meds and not tolerated them, but it's worth a try, the insurance woman says. She says the way it works with my insurance is, I sign a waiver and probably pay upfront, and then we have to appeal. (It's $1000-1200/dose, once a year.) Now I am not particularly up for dealing with insurance companies, ever, but this woman is very helpful, and wonderful, and I am hoping she's going to take care of all the interactions with them. I'll write a letter if it'll help, and get the GI doc to write a letter....

Meanwhile, my digestion is worse than usual. I don't know that there's anything to SEE in a scan that would help me get the IV meds, but I'm gassy every night now -- daytime some too, but particularly at night. It's like my gut really wants me to not eat dinner. So I've started eating very light at dinnertime. We will see.

No comments: