Thursday, May 10, 2012
In the article below, THIS is what we're worried about, for me. . : ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , '. : ` , '
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osteonecrosis of the jaw
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This has ALWAYS been the worry. Teeth and jaw. The fact that a tooth was resorbed is scary and ominous; it's how this starts sometimes. I'm planning to get THREE implants even though they are unbelievably expensive, because they will even out the pressure (chewing and grinding) so that more teeth/implants share the burden -- and ALSO so that the jaw is stiulated.. : ` , '. : ` , '. : ` , '. : ` , '. : ` ` , '. : ` , '. : ` , '. : ` ,
I guess this is news that the FDA is admitting the problem. But it's a bit like water is wet.... not really news. Well maybe it will make dentists & endodontists take it more seriously so that people with family and personal histories like mine who do their best to figure out ahead of time what they should do will be told NOT to do it..` , '. : ` , '. : ` , '. : ` ,
In the meantime I am hoping to save the rest of my teeth (just 21 now) and my jaw..... : ` , '. : ` , '. : ` , '. : ` , '. :
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New Cautions About Bisphosphonates - NYTimes.com
http://well.blogs.nytimes.com/2012/05/09/new-cautions-about-long-term-use-of-bone-drugs/?ref=health. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` ,
Concerns about bone drugs were prompted by rare reports of an unusual thigh fracture.
In an unusual move that may prompt millions of women to rethink their use of popular bone-building drugs, the Food and Drug Administration published an analysis that suggested caution about long-term use of the drugs, but fell short of issuing specific recommendations.
The F.D.A. review, published in The New England Journal of Medicine online on Wednesday, was prompted by a growing debate over how long women should continue using the drugs, known as bisphosphonates, which are sold as generic versions of brands like Fosamax and Boniva, as well as Novartis’s Reclast. ` , '.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , : ` , '. : ` , '. : ` ,
The concern is that after years of use, the drugs may in rare cases actually lead to weaker bones in certain women, contributing to “rare but serious adverse events,” including unusual femur fractures, esophageal cancer and osteonecrosis of the jaw, a painful and disfiguring crumbling of the jaw bone..` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
Although the concerns about the long-term safety of bone drugs are not new, the F.D.A. performed its own systematic review of the effectiveness of bisphosphonates after years of use. The agency’s analysis, which found little if any benefit from the drugs after three to five years of use, may prompt doctors around the country to rethink how they prescribe them.. ` , '. : ` , '. ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , : ` , '. : ` ,
The F.D.A. review analyzes only long-term use and does not address whether a woman should be prescribed a bone drug in the first place to reduce her fracture risk. Because serious complications are so rare, most doctors believe that for women with documented osteoporosis who are at very high risk for spinal fractures, the benefits of the drugs far outweigh the risks. However, some women with moderate bone density and no other risk factors continue to take the drugs for years even though they are unlikely to gain any benefits.
“I think a lot of people are going to come off this drug,” said Dr. Clifford J. Rosen, an endocrinologist and researcher at the Maine Medical Center Research Institute.. ` , '. : ` , '. : ` , '. : ` ,` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
Bones are in a constant state of remodeling, but after age 30 or so, a woman’s bones start to dissolve faster than they can be rebuilt, and after menopause she may develop thin, brittle bones that are easily broken. Bisphosphonates slow this process. The drugs are incorporated into newly formed bone and can persist there for years, long after a patient stops taking them.` , '. : ` , '. : ` , '. : ` ,
The F.D.A. report offered little specific guidance about long-term use, saying that the decision to continue or stop treatment should be based on an individual assessment of risks, benefits and preferences discussed between a patient and her doctor. The agency did say that women at low risk for fracture or with a bone density near normal may be good candidates to stop therapy after three to five years, but older patients at higher fracture risk and bone density “in the osteoporotic range” may benefit from continued therapy.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
But an accompanying article by Dr. Rosen and others, also published in The New England Journal of Medicine, offers more specifics, concluding that the women most likely to benefit from long-term use of the drugs are those who, after three to five years of treatment, continue to have very low bone density, as measured by something called a “T score” that is lower than minus 2.5. Women with a history of spinal fracture or with an existing fracture also are most likely to benefit from long-term use of the drugs, the researchers concluded.
However, many women who are prescribed bone drugs have been given a diagnosis of osteopenia, moderate to low bone density that is not low enough to be called osteoporosis. These women are unlikely to benefit from long-term use and should probably stop taking the drugs after about three years, the researchers said. ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
It is not clear how many women would be affected based on those recommendations, but many women tire of the therapy and stop taking it on their own anyway, partly because of inconvenient requirements like remaining upright after taking the drugs and common side effects of heartburn, nausea and flulike symptoms. Even so, the researchers estimate that perhaps 60 percent to 70 percent of current users would be candidates for stopping the drugs after three to five years.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
The recommendations are based on findings from two industry-sponsored studies led by the University of California, San Francisco, that focused on long-term use of the drugs. A study of Fosamax, which is sold generically as alendronate, continued for 10 years, and a study of Reclast, an injectable form of the drug zoledronic acid, continued for six years. According to the F.D.A. analysis, both studies showed significant reductions in fracture risks during the first three to four years of use but little or no benefit with longer use.
In the Fosamax trial, 10.6 percent of Fosamax users suffered a fracture during the first three years of use, compared with 21 percent of those in the placebo group, according to the F.D.A. analysis. But there was no benefit seen among women who continued the drug for the next 5 to 10 years. In the Reclast trial, 9.8 percent of women taking the drug suffered a fracture in the first three years of the study, compared with 20 percent of women who were taking a placebo. By four to six years, the benefit had narrowed, with 8.6 percent of Reclast users suffering fractures, compared with 12 percent in the placebo group.` , '. : ` , '. : ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` ,
The two studies did not show any increased risk of serious side effects with long-term use of bisphosphonates, but experts say the studies simply were not large enough to detect a relatively rare adverse event. Even so, there have been numerous case reports of the unusual fractures and other side effects, prompting widespread concern about the risks with long-term use. No one knows how common the femur fractures are, but estimates have ranged from 1 in 10,000 users to 10 in 10,000. ` , '. : ` , '. : ` , '. : ` ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ,
Women should be reassured that serious complications are rare, said Dennis M. Black, a professor of epidemiology and biostatistics at U.C.S.F. and the lead author of the article that accompanied the F.D.A. report.` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
“The reality is there is a lot of uncertainty in this situation,” Dr. Black said. “The F.D.A. report was very general, and we tried to be much more specific and use evidence from the best trial available. Hopefully people who are using this drug will be reassured.”` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` , ` , '. : ` , '. : ` , '. : ` ,
Dr. Rosen said that even though the F.D.A. report was vague on specific recommendations, he was pleased to see the analysis published.
“It’s a very new thing that they submit a paper to The New England Journal that presents all sides of the argument,” Dr. Rosen said. “I think it’s a good thing, because I’ve been on these advisory committees for years, and we get a big crowd in Washington, but the doctors never see the results."
Thursday, May 3, 2012
TEETH
I have an appointment to have a tooth extracted -- which is weird, at our age. The tooth is resorbing -- hollowing out on the inside. The dentist said it's from pressure, from grinding -- which is odd since lots of people do that, and I've been doing it all my life, so why would the tooth suddenly be resorbing now? I do have ONE possible reason..... indirectly caused by bisphosphinates....
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I had a couple of molars on my left side extracted in preparation for the bisphosphinates, which can cause a LOT of problems with teeth & jaw, esp. if any problems (esp. extractions) happen during and too soon after bisphosphinates are taken. I got advised to have these two molars out so they wouldn't need to be etxtracted during or too close to the bisphosphinares -- back in spring 2009. They had a "poor prognosis," but they were FINE and I take great care of my teeth and they would have been here still, I'm SURE, and for awhile yet .....but I had them out -- the threat to my teeth and jaw was too scary. (Which is ironic considering the problem might be worsened by having had them out....) Anyway, after the left molars were extracted I started chewing most of my food on the right because it suddenly had a lot more grinding surface. So that side suddenly started getting a lot more pressure from chewing -- that was just about 3 yrs ago, early July 2009. The endodontist I saw 2 weeks ago said that the hollowed-out root (in my lower RIGHT molar, where I now chew most of my food) looks like it's been going on for at least 2 years.
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I came home from the endodontist's and called the oral surgeon immediately -- which is a remarkable thing for me; I never do that. And 2.5 weeks was the best they could do. I told them I thought it was too long..... that it would abscess by then. They said, Well call us if any problems..... (I really wanted to say "I AM!") But I didn't -- and sure enough it started hurting a few days ago -- which had happened before and gone away, but this time my jaw hurt too -- which was new, and scary, and ironic, considering the bisphosphinate worries that got me here..... which everyone always tries to reassure me about using statistics. (Statistics? That's when you add everyone up and then divide by the # of people. How does it help ME if this issue only happens to one person in a million if I'm IT?) So I called and they prescribed antibiotics, which worked great, and moved my appt up a couple of days -- to tomorrow 11:30am. (Which is of course a sucky time, right in the middle of a bike ride....) I didn't realize it might be an infection til they mentioned antibiotics -- before that when the tooth hurt it was in a throbbing way, and I thought it was probably because the root-hollow was reaching the nerve. I have been refilling cavity-like hole on the side of it, and I can tell when I clean it that it's close to the nerve, so that made sense.... Until recently when it would hurt I'd figure it was time to change the filling.....
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BTW please excuse all the funny punctuations dotting the spaces between parragraphs. Google seems to have removed the ability to make paragraphs -- and I'm trying to find a way to make spaces in between paragraphs.....
Thursday, February 9, 2012
Tamoxifen Worries
I am not always predictably well these days, I have been noticing -- that's why I haven't been posting rides, and I've even been leaving signing up for yoga classes til the la, a breast cancer drug I'm on. Might actually be dangerous side effects..... I'm going to see if I can move my oncologist appt up and talk with him about stopping the drug early. Today is my 3 year anniversary of starting to take it. It's supposed to be 5 years, but look at this:
http://www.all-natural.com/tamox.html
I found it after looking up some symptoms I have which I found might indicate liver damage.... so then I looked up tamoxifen and liver damage....of course all drugs go through the liver, so I knew I'd find SOMEthing, but wow! It's also known to have effects on the bones, joints and muscles.
Oh yeah, and I believe I'm taking the standard adult dose -- not adjusted for body size/weight, etc. I thought of this because yesterday I had my blood drawn for a physical and when the nurse took my BP she said "95/80. That would be low on anybody else, but it's probably about right for your small frame." I've always had "low blood pressure" and no one ever made a connection before with that and small body frame/size. The radiation dose was too much for me (and I think that WAS adjusted to body size/weight/frame) and gosh, I can only drink half a beer, usually..... why would anyone think I could take a standard dose of tamoxifen???
My known tamoxifen side effects include:
pebbly poop x 1 month (unusual before then,)
the shakes, on and off, for a good few weeks --
increasing frequency and lasting longer.
Last Tues it started w/Ginny's class and lasted
all afternoon
Teeth problems -- resorption of lower right molar!!
(The tooth next to it is in danger too -- and the
dentist says implants are not an option given the
bone loss.)
Fatigue -- increasing -- this is hard to pinpoint of course
Hot flashes -- THIS since the beginning, every half hr while awake,
and waking me a couple of times a night -- on a good night.
But I can deal with those things, if it's NOT the right thing to do. HOwever I'm starting to wonder now if maybe it's NOT the right thing.......
http://www.all-natural.com/tamox.html
I found it after looking up some symptoms I have which I found might indicate liver damage.... so then I looked up tamoxifen and liver damage....of course all drugs go through the liver, so I knew I'd find SOMEthing, but wow! It's also known to have effects on the bones, joints and muscles.
Oh yeah, and I believe I'm taking the standard adult dose -- not adjusted for body size/weight, etc. I thought of this because yesterday I had my blood drawn for a physical and when the nurse took my BP she said "95/80. That would be low on anybody else, but it's probably about right for your small frame." I've always had "low blood pressure" and no one ever made a connection before with that and small body frame/size. The radiation dose was too much for me (and I think that WAS adjusted to body size/weight/frame) and gosh, I can only drink half a beer, usually..... why would anyone think I could take a standard dose of tamoxifen???
My known tamoxifen side effects include:
pebbly poop x 1 month (unusual before then,)
the shakes, on and off, for a good few weeks --
increasing frequency and lasting longer.
Last Tues it started w/Ginny's class and lasted
all afternoon
Teeth problems -- resorption of lower right molar!!
(The tooth next to it is in danger too -- and the
dentist says implants are not an option given the
bone loss.)
Fatigue -- increasing -- this is hard to pinpoint of course
Hot flashes -- THIS since the beginning, every half hr while awake,
and waking me a couple of times a night -- on a good night.
But I can deal with those things, if it's NOT the right thing to do. HOwever I'm starting to wonder now if maybe it's NOT the right thing.......
Wednesday, September 7, 2011
Scary post radiation skin spot
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....
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.)
------------------------------------------------------------------------------
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.....
-----------------------------------------------------------------------------
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....
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.
Saturday, September 4, 2010
Biking the Blue Ridge Challenge
I'm planning to do this ride on Monday (labor day):
http://bikewashington.org/routes/bluerdg/index.htm
NO idea if I can bike up that godawful mountain at ANY pace, but hey, I can walk it. (Then lessee how I get DOWN it....)
A lot of people seem to think that the way to expand lung capacity is to ride hills. So..... here are some hills! The women I'm going with are planning to ride at a moderate pace -- that's why I'm attempting it. Wish me luck!!!
Will tell about the hot flash/acupuncture/herb progress in Ithaca next time. Now I've gotta get to bed.
http://bikewashington.org/routes/bluerdg/index.htm
NO idea if I can bike up that godawful mountain at ANY pace, but hey, I can walk it. (Then lessee how I get DOWN it....)
A lot of people seem to think that the way to expand lung capacity is to ride hills. So..... here are some hills! The women I'm going with are planning to ride at a moderate pace -- that's why I'm attempting it. Wish me luck!!!
Will tell about the hot flash/acupuncture/herb progress in Ithaca next time. Now I've gotta get to bed.
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