New research about the joint/bone/muscle/tendon problems I've been having

Aromatase inhibitor-induced arthralgia in early breast cancer: what do we know and how can we find out more?
Breast Cancer Research and Treatment, Monday, February 16, 2010 (link)

Abstract: Aromatase inhibitors (AIs [such as Arimidex, which is what I took that caused my joint problems]) are a standard of care for the adjuvant treatment of hormone responsive early [breast cancer] ... Arthralgia was a somewhat unexpected side effect of this class of agents and has proven to be potentially problematic in clinical practice. Although rates of up 35% have been reported in the randomised trials, the figure has been much higher in subsequent case series. There is concern that these symptoms are significant and may affect compliance and thus the overall efficacy of treatment. It is therefore extremely important that we evaluate this syndrome with a view to gaining more information regarding its clinical features and possible aetiological mechanism. The potential aetiological mechanisms and evidence for aromatase inhibitor-induced arthralgia (AIA [the bone, joint, tendon and muscle problem I've experience]) are reviewed in this article. Looking forward, it is now important that prospective clinical trials are well designed to evaluate this syndrome and potential therapeutic strategies to circumvent it. Radiological imaging and biochemical analyses may help our understanding of AIA and these are discussed.

Great ... looks like they're just starting to really research this side effect that has caused me so much grief these last 4 months. No wonder I'm having trouble getting any useful answers.

In this research report released on the same day, the following statement is included in the abstract: " ... vitamin D is being investigated as a means to reduce aromatase inhibitor-induced joint symptoms." (link to study published in Current Oncology Reports.

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Prevention of Aromatase Inhibitor-Induced Bone Loss Using Risendronate: The SABRE Trial.
Journal of Clinical Oncology, Vol 28, No 6 (February 20), 2010: pp. 967-975 (link)

Conclusion: In postmenopausal women at risk of fragility fracture who were receiving adjuvant anastrozole [such as Arimidex, which is what I was taking that caused my joint and bone problems] for EBC [breast cancer], the addition of risedronate at doses established for preventing and treating osteoporosis resulted in favorable effects in BMD during 24 months.

Supported by AstraZeneca Pharmaceuticals [the company that makes Arimidex]

This means they're at least looking for ways to deal with the long term bone and joint problems that women using estrogen blockers (like Arimidex) are experiencing.

** Note that the text in square brackets are mine.

New research about the joint/bone/muscle/tendon problems I've been having

Another Kick At The Can

I laughed when I saw this. It's the picture that would have gone with my post yesterday!

Today, I'm happy to say that I do feel calm. I feel better than yesterday. I didn't sleep so well last night again but I didn't try to get up early and I let myself sleep as long as I needed, which was until about 10:45. For this past week or so, it seems that my best sleep starts around 6:00 or 7:00 a.m. Anyway, sleeping as long as necessary may have made the difference today.

While I'm not "on top of the world" today, I do feel generally better and less upset. I'm less achy and my stomach isn't upset today, though it was in the night for a bit.

It's no wonder I feel despairing sometimes when I thought that I would be feeling steady improvement once I got through chemo and then radiation. Nobody warned me that there might possibly be nasty side effect issues caused by the drugs I'm to take afterward. I knew there were potential side effects but so do tylenol and cough syrup have potential side effects. I didn't know that there was likely to be quality-of-life compromising side effects. I wasn't expecting this and then to have it continue longer than even my oncologists thought it would has been disheartening. It makes it much harder to move forward and it certainly slows my progress. A lot.

Getting ready for work, getting in and out of vehicles, walking to the office, dealing with snowy and icy surfaces ... and then repeating the process to go home are the most tiring things about work, I think. I might have to see about going in to work every second day instead of every day.

I think I did remarkably well walking outside with Otto while I was wearing Luke's old sorels (giant winter boots), which are at least two sizes too big. They allowed me a little more stability on uneven surfaces. And they're so heavy, I mostly shuffled instead of lifting my feet. It was more like snow-shoeing. I also had to shuffle because the boot laces were missing and I could easily step right out of them. Where are the laces? I think they've been repurposed as shooting strings in a lacrosse stick somewhere.

In my own shoes and boots, I've fallen 5 times in the snow already just getting to and from the car. I haven't slipped on ice and I haven't really hurt myself except for rehurting my shoulder, which happens just as easily sometimes just dressing myself. Sometimes all it takes is to step into snow and over I go. I think the numbness in my feet really impacts my stability on uneven surfaces and I'm sure the joint problems don't help. So even a short walk to the car comes with it's problems. I might have to resort to wearing Luke's sorels to work to make it across the parking lot and down the sidewalk to work. I know I felt very vulnerable walking back and forth on Tuesday.

Anyway, wish me luck today. I'm going in this afternoon. I might be the only one in our office, though, according to Nora. Most of my colleagues took part or all of this week off.

I think I'll wear Luke's boots today.

Another Kick At The Can

Ain't No Sunshine

Not in my little world today, that's for sure. I just felt crappy all day and so I didn't go to work on what woulda coulda shoulda been work day number 2. I was so disappointed! I didn't stray far from the sofa all day and just watched Olympics and slipped in and out of naps.

My joints actually ached today. My stomach was a little upset all day and during the night last night. I had a headache. I was tired from not sleeping well. For the first time in a long time even the place where my PICC-line was inserted hurt a little, too! What's with that?! I must say, though, that I've noticed some correlation between my feeling tired and my joints hurting more. I have no idea why that would be so but it seems so nonetheless. It's not just that I have less tolerance for pain when I'm tired, my joints are actually more stiff and sore. My fingers were so stiff today I had trouble doing some things that I can usually do without any problems ... such as opening the container I keep carrots in.

Instead of staying in bed and sleeping longer in the morning I got up hoping that once I was up I would feel okay but it didn't work that way. I had hoped to get to work a little earlier today ... say, around 10:00 ... and then I planned on going in at 1:00, but that didn't happen and by 1:20 I gave up any thought of it.

So I've been a little bummed all day and I still don't feel quite right.

All I can say is that I hope I feel good tomorrow and I plan on being in my office at some point.

After reading today's post, please don't send me any cheery notes or suggestions of ways to improve my lot. Just think a little wish to me for a better day tomorrow ... and the next day ... and the next day, which is what I know you are all doing anyway (thank you so much ... it means so much to me).

I became cranky (and I almost NEVER get cranky) as the day progressed and I don't have much capacity for cheer tonight. Tomorrow. Tomorrow I will. I do know that there will still be tough days to come and that returning to "real life" won't happen over night. After everything going so well yesterday, though, I didn't think I'd feel so lousy today already. No wonder I'm a little bummed. But don't worry. I'll get over it. I've already started making adjustments in my mind. I do think the way I feel today is an anomaly. So let's all try to forget that today happened for me.

It is also in the back of my mind that Tamoxifen can cause depression. Many women on Tamoxifen are also taking an antidepressant (to treat depression and/or hot flashes). Several women stop taking Tamoxifen entirely because of this particular side effect. And, just to throw another kink into the mix, new research indicates that some of the most common antidepressants being prescribed interfere with the effectiveness of Tamoxifen (Here's a link to information about that). Why I mention the link between Tamoxafin and depression is because it's uncommon for me to feel the way I do today, though I think I thoroughly deserve to feel this way from time to time. That said, if feeling this way becomes commonplace for me, I will be on high alert to it being a possible side effect of the drug. I have never in my life felt depressed and for me to feel that way more often now would strongly suggest to me that it's a chemically-induced feeling.

And you can bet I've been contemplating my joint and drug issues and as much as possible I have plans, back-up plans and personal deadlines for signs of improvements. I think about it a lot. I follow the status of current research a lot. A lot. A lot. I bet I know more about the research than most (and maybe all) of my doctors. As much as I wish there was some way to make this joint problem go away NOW, trust me ... I have done my research and I have set my own limits as to how long I will let this last before seeking further consideration from doctors. There is no magic pill I can pop to make all this go away. I'm not being ridiculously patient. I think I'm being as patient as I'm required to be based on what I've been told by doctors and what I've learned from my research. And I know I have to wait a little longer before trying to get some medical answers and, from what I've learned, there may be no answers. There aren't always answers. I know that and stamping my feet and having tantrums won't make one iota of difference so I might as well keep calm and carry on.

Here's to a better day tomorrow!

Ain't No Sunshine

What Am I Doing Up This Early?

I wish I could have slept longer. I was thirsty and forgot to take a glass of water upstairs with me last night. So here I am.

Last night we had a nice dinner at Kaos on Broadway with Kelly and Chantelle and Dana and Sue and then we went to Kelly and Chantelle's for cupcakes and Rummoli! The best part was that we all got to sit around the kitchen and watch Chantelle make icing and decorate the mini cupcakes all fancy like! She used her brand new KitchenAid mixer ... Sue and I have appliance envy! I didn't have my camera with me so we used Chantelle's camera and she promised to send me some photos.

And then we played Rummoli, which I'd never played before. A good time was had by all, even Kevin, Sue and I who ended up with the least pennies.

There are no improvements to report in the joint department. Alas. Patience is getting harder to maintain. I really, REALLY believed (and was led to believe) that this joint issue would be a thing of the past by the time I started back to work.

My left underarm is still a little puffy, too. It's been like this for a few weeks (I think) now. Always a little puffy and sometimes worse than others. Last night it was worse. It's puffy above the incision where my two lymph nodes were removed and I'm not sure why. I think I might have to see a Doctor and ask about it just to make sure there isn't something to worry about with the other lymph nodes, which would be in that location. If it had been puffy there the whole time since my surgery last March, I wouldn't think much of it but because it's only really been puffy lately, I think I should have it looked at. Could the radiation have caused some latent swelling? But first the question is who should look at it? My oncologist? My radiation oncologist? My surgeon? My family doctor? I think I'll start with my family doctor. I find I sometimes ask one and they suggest I talk to the other who then suggests I should go back and talk to the one I had just talked to. If they can't figure out who should be treating me for what, how can I? My scheduled appointment to see my radiation oncologist isn't until the end of April but I don't think I should wait that long. I know. I'll call Marg (the oncological nurse) and ask her, which will also give me the opportunity to mention to her that my joints still haven't improved and see if she has anything to say about that. That's what I'll do. Next week.

I'm still so tired. I think I'll go back to bed.

What Am I Doing Up This Early?

Guinea Heather

Last night I could feel anger rising and even though I fell asleep exhausted by 11:30, I was awake at 3:00 a.m. thinking and getting angrier with every minute. I finally got out of bed and did some research on Arimidex and its side effects. Again.

I don't get angry very often so I allow myself these rare moments and believe they're good for me and will help me in the long run even if it's just to motivate myself. I'm sure we can all stand to get fired up a bit every now and then.

I found a discussion on Arimidex that started in 2006 and still carries on. I read the whole thing, which took more than 4 hours (all 450+ comments). It was so comforting to know that there are so many others that share these awful side effects from the Arimidex.

I had fully expected, based on what my oncologist suggested, that my side effects would have subsided by now but I see no real improvements. In fact, some days lately my fingers in particular seem worse. It helped me to read that some women didn't feel improvements until even 3 or 4 months after quitting Arimidex. Then again, there were a couple who after 5 and 6 months hadn't seen any improvements and there were some who felt some improvements but had some lingering side effects as well.

There were a lot of questions about the possibility of permanent damage from the drug and a lot of frustration expressed with doctors and the manufacturer of the drug (AstraZeneca) who do not warn patients about these relatively common and debilitating side effects. In fact, it seems that AstraZeneca really doesn't know about long term effects and how to best manage the side effects that are being reported.

I feel like a Guinea Pig! That wouldn't be so bad if I had CHOSEN to be a Guinea Pig! It makes me angry.

Still, I feel better after having read more about other people's experiences and having learned that it might just take a little longer yet for me to feel some relief. So many people's descriptions of their symptoms and frustrations echo my own ... like the woman who can hardly get herself up off the floor or in and out of the tub ... the women who try, try, try to get exercise but find it such a struggle ... and the many women who report that they feel ancient and crippled ... the women who report their hands feeling like claws ... those whose doctors tell them the joint problems aren't their concern - go see someone else. So many. So similar.

All of that aside, it's worth saying that some people are able to handle the drug very well and so it's worth trying based on its potential benefits. It's supposed to be better than Tamoxifen (for post-menopausal women) in preventing recurrences. But for many of us, I see, it becomes a quality of life issue and many choose to stop taking the drug. I'm one of those, though I will try Tamoxifen. I read that many women who had trouble with Arimidex were able to better tolerate Tamoxifen. I'm still waiting a little longer before starting it, though, hoping that my joint problems will subside first so I'll be able to distinguish the side effects of one from those of the other.

I have my moments of frustration and anger with these side effects. I had fully expected to be well on my way to recovery by now but these joint and muscle problems make recovery seem like such a distant possibility. I so want my life back and this is the only thing that really seems to stand in the way of that. I expected full recovery from treatments to take time but I hadn't counted on this. It only makes me angrier that I wasn't given a head's up about it. I expect full disclosure from doctors and pharmaceutical companies so that I can be making informed decisions. I wouldn't be so angry about this if my decision to try Arimidex had been a fully informed one. I feel duped!

I also feel pretty tired. No yoga for me this morning. I think I have to go back to bed now that I've researched, read and now vented to my team! I'd better take myself out of the game for a while because I feel like I might otherwise get myself kicked out. Go ahead, though, and slam some cancer baddies into the boards for me while I'm on the bench cooling down.

Sorry for not having anything more positive to report this otherwise fine Monday morning.

Guinea Heather