In early August I found a scary skin spot right about where my right nipple used to be..... so in a place that never gets sun but that got a LOT of radiation a couple of years ago. I waited a week or 2, as we had discussed in support group (when you get funky new symptoms, wait a week or 2 to see if they go away or were something non-cancer related before alerting the oncologist.)
I frankly thought my spot might be from trauma, a small well defined bruise-type thing from a poke, maybe.... my nerves were cut during my mastectomy and I don't feel much in the skin of the right side of my chest. I feel stuff in the ribs, but frankly, I'm pretty oblivious about pokes and bumps ..... I always have unexplained bruises, and it wasn't til I was in my 20s that I figured out that I don't in fact bruise that easily.... I just ADD all the trauma! (Sometimes I walk into doors and actually THINk to myself That did not just happen! and then I edit it out.... and then I really forget!!
But when it didn't go away in a week or two I showed it to Alan and he looked alarmed, which got me really worried..... so the next day I sent this email to my radiation oncologist, who I hadn't seen in a good while (almost a year - since the cellulitis, which he dx'd.)
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I have a large discolored spot I'm concerned about, just above my mastectomy scar -- in the area that was radiated. I noticed it maybe a week ago and was thinking it might be a bruise, because it's so large and appeared out of nowhere (and in an area where I'm numb, so wouldn't notice if I poked myself.) However, it's still there, and my husband doesn't think it looks like a bruise. I was thinking I should see a dermatologist, but my husband thought it might make sense for me to have you take a look at it first.
The spot is ~3-4 mm, irregular, spotty, red, and a little bit raised. It's just under 1" to the left of my top tatoo dot (to the right of it from your POV as you look at me.) Would you like to take a look at it? Maybe you'd be able to get me in to see a dermatologist more quickly than I would myself, if you think it looks concerning.....
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This miraculous doctor answers email so fast that when I didn't hear from him within a couple of hours I knew he was out of town. I called G-town and sure enough.... so I scheduled a derm appt for just before I left town....
I guess I should back up and explain what was going on at the time...
All this was happening in the middle of my LIFE of course..... We were getting ready to drop Matthew off at UVA on Friday 8/19, which was, um, kinda surreal. (He seems happy though. And it's not halfway across the planet, which is nice for us.) Em and I had planned a road trip starting the following Monday. (Alan couldn't take time off work to come -- if he wants to have time to do the family Christmas. I felt a little bad about it but he actually sounded happy to have the time to himself. Said he'd defrost the freezer and give the dog a bath. Hey whatever blows your hair back.... I do have to say, Pinky smells NICE! We were getting to the point where we were thinking we'd have to change her name to Stinky...) Anyway Em and I traveled first to Ithaca and then Boston -- and back in time to spend labor day weekend with Alan before Em started High school.
We ended up having to delay our trip start til Tuesday so I could see a derm first, in Bethesda, and we left from there. By then the spot had faded to a light benign looking age-spot-type thing with regular edges, and I was thinking it probably HAD been trauma.... So when the derm said it was benign and due to radiation changes I was already unworried about it.
But when we were in Ithaca it got dark and scary again. WTF??? It was dark for a good week or so and then it faded again (mustabin when we were in Somerville) and then it came back again. Who ever heard of THAT??? By then my radiation onc had returned and answered my email and asked me to come in, so I planned to come in on Tuesday -- yesterday.
Well I still don't understand exactly how he knew it was benign..... but the doctor's relief was so palpable -- and I trust his judgement -- that I guess it must be benign. He was laughing and happy and kept congratulating me..... (It must suck to have to give someone a bad diagnosis..... I remember well having to give people HIV+ results....) OH yeah and did I mention, he had asked me to call his scheduler and schedule a visit with him, but I hadn't - I was waiting to make sure the spot stayed dark and scary, and thinking I'd call Tuesday am. But instead the doc emailed ME on Monday night and asked if I was coming in, and what time. I guess he accessed his schedule online, because when I came in I had a bona fide appointment.... What a guy! (Now if I could just get my medical onc to do email -- or even answer calls. The nurse answers calls and she's good, but sometimes it's a multipart question for the doctor, and then she says "Do you want to come in and talk to him about it?" and sometimes I was just THERE, so NO.... Anyway, that's another story, and not as nice as this one.)
Anyhow about the funky spot -- I had really been hoping to have it OFF because I don't want to repeat what happened with my breast cancer (negative mammogram in 2006, negative mammogram in 2008 -- followed by a diagnosis of stage 3 cancer, and BTW I probably had it for 8 years, and most definitely during both mammograms.... my breast surgeon has shown it to me on the old mammos and even I can see it now....) On the other hand, this doctor is really good and they are likely to be more careful with me because of my history of cancer.....
Anyhow.... at this point if I really want it biopsied my radiation onc wants me to see my breast surgeon to take care of that. THIS I hadn't thought of, but because the spot is in my no-lymph-node area, it's better to have HER (breast surgeon) do it than a dermatologist..... Anyway I have to think about that. Not sure if I will schedule an appt with her for sooner or wait til i see her in December....
Wednesday, September 7, 2011
Sunday, April 10, 2011
update on Zometa/reclast and digestion
Well lemme tellya, when I wrote the last post I had no idea. The reclast was the worst of all. I was exhausted for 2 months, at which point I became convinced that I was dehydrated* and started super hydrating, which made a BIG difference. DIdn't fix it copletely, though. I still have to be careful, which I don't like.
I remember Lynn talking about having to be careful to ration out her energy while she was on chemo, and worrying that if I were ever in a similar situation..... I would have a really hard time with it; I just don't have the planning skills! That was, oh, some months before my own diagnosis.... but luckily for me chemo was not like that for me, and I didn't have to learn to ration out my energy. (Whew!) However, NOW I'm having to work on that.
* About the dehydrated thing.... Christina, my acupucturist, wondered if I was dehydrated. She hears my symptoms every week when I see her (well twice a week now) so her ideas come from hearing about my symptoms. Still, I dismissed it because I haven't been thirsty. However, I realized I'm usually very careful to hydrate.... in the summer, when I'm biking in hot sweaty weather. I don't worry about it so much in the winter. And I always think of hydrating as a companion thing to exercise.... though I DID hydrate extra when I was on chemo, and also the day I got the reclast. It didn't occur to me that I might need to hydrate extra for MONTHS!
But after CHristina wondered about dehydration, I saw online that it could be a side effect of reclast, and that the symptoms I was having were listed as side effects of both reclast AND of dehydration.... Then I went to the dentist and I had my first CAVITY in over 30 years.... I was instantly suspicious. I said to the dentist, WAITAMINIT, how could this be caused by that nasty drug? And he asked if I had had a dry cottony mouth.... which in fact I have had, but not thought anything of. He explained that bacteria don't cause cavities directly by eating holes in your teeth.... they produce acid, which eats holes in your teeth -- except that saliva neutralizes it -- or washes it away, or something. But if you don't have enough SALIVA.... Is that interesting or WHAT???
Well that convinced me that I was dehydrated. I went home and watered myself like I was a newly planted shrub. The pain in my leg went away.... I neglected to mention that at the beginning of this post, but I had a pain in my left leg just at the base of my hamstring, which started around the same time as the exhaustion, about a week after the reclast. It wasn't that painful, but it was more or less constant, and I wondered what it WAS. It made my leg feel heavy, and I wondered if I should be careful of it somehow..... I was also getting leg cramps during the night, for the first time since pregnancy. Very strange! These symptoms have disappeared since I started hydrating.... That was on 3/14, 4 weeks ago tomorrow -- so that's pretty real.
The other interesting news is about the digestion. I tried eliminating wheat, and the result has been pretty dramatic.... so I've cut it out. Now I'm eating no meat, sugar/honey/maple syrup, only limited dairy (feta, yogurt, & aged cheese -- but nothing else,)and very limited soy and alcohol..... Good thing I'm not actually a picky eater :-D
So -- I have to be careful not to over-exercise, and of course I'm not real clear about what that means, so that's an interesting dance. I've stopped biking to acupuncture, because C says that I use up her treatment on my ride home..... My digestion is touchy even though the drug didn't go through my gut -- but much better w/o wheat.
I remember Lynn talking about having to be careful to ration out her energy while she was on chemo, and worrying that if I were ever in a similar situation..... I would have a really hard time with it; I just don't have the planning skills! That was, oh, some months before my own diagnosis.... but luckily for me chemo was not like that for me, and I didn't have to learn to ration out my energy. (Whew!) However, NOW I'm having to work on that.
* About the dehydrated thing.... Christina, my acupucturist, wondered if I was dehydrated. She hears my symptoms every week when I see her (well twice a week now) so her ideas come from hearing about my symptoms. Still, I dismissed it because I haven't been thirsty. However, I realized I'm usually very careful to hydrate.... in the summer, when I'm biking in hot sweaty weather. I don't worry about it so much in the winter. And I always think of hydrating as a companion thing to exercise.... though I DID hydrate extra when I was on chemo, and also the day I got the reclast. It didn't occur to me that I might need to hydrate extra for MONTHS!
But after CHristina wondered about dehydration, I saw online that it could be a side effect of reclast, and that the symptoms I was having were listed as side effects of both reclast AND of dehydration.... Then I went to the dentist and I had my first CAVITY in over 30 years.... I was instantly suspicious. I said to the dentist, WAITAMINIT, how could this be caused by that nasty drug? And he asked if I had had a dry cottony mouth.... which in fact I have had, but not thought anything of. He explained that bacteria don't cause cavities directly by eating holes in your teeth.... they produce acid, which eats holes in your teeth -- except that saliva neutralizes it -- or washes it away, or something. But if you don't have enough SALIVA.... Is that interesting or WHAT???
Well that convinced me that I was dehydrated. I went home and watered myself like I was a newly planted shrub. The pain in my leg went away.... I neglected to mention that at the beginning of this post, but I had a pain in my left leg just at the base of my hamstring, which started around the same time as the exhaustion, about a week after the reclast. It wasn't that painful, but it was more or less constant, and I wondered what it WAS. It made my leg feel heavy, and I wondered if I should be careful of it somehow..... I was also getting leg cramps during the night, for the first time since pregnancy. Very strange! These symptoms have disappeared since I started hydrating.... That was on 3/14, 4 weeks ago tomorrow -- so that's pretty real.
The other interesting news is about the digestion. I tried eliminating wheat, and the result has been pretty dramatic.... so I've cut it out. Now I'm eating no meat, sugar/honey/maple syrup, only limited dairy (feta, yogurt, & aged cheese -- but nothing else,)and very limited soy and alcohol..... Good thing I'm not actually a picky eater :-D
So -- I have to be careful not to over-exercise, and of course I'm not real clear about what that means, so that's an interesting dance. I've stopped biking to acupuncture, because C says that I use up her treatment on my ride home..... My digestion is touchy even though the drug didn't go through my gut -- but much better w/o wheat.
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.
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.
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