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Showing posts with label Arimidex. Show all posts
Showing posts with label Arimidex. Show all posts

Sunday, February 21, 2010

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.
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Thursday, February 18, 2010

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.
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Monday, February 1, 2010

Tamoxifen - Day 1

This morning I start my Tamoxifen. It's the drug I'm to take for the next 5 years ... replacing the more effective (for my circumstances) Arimidex that I started but was unable to tolerate. Do your best, Tamoxifen! As for your worst ... please have mercy! I do fully expect the return of hot flashes, though. I hope they're no worse than previously, which were merely annoying and slightly disruptive. I know some people have worse experiences. I know they're a lot easier to manage if you're in the comfort and privacy of your own home and if you can whip off your hair whenever one strikes.

I'm happy to say that my skin tags were dropping like flies yesterday! I only have one of 6 left. I wonder where they go? I think I'll sweep, vacuum, and wash our sheets today. There are just little red spots where the 5 missing skin tags were and all but one of those are completely flat and look like they'll heal with nary a mark to show where they'd been. That's good.

Joints ... the same stiffness I've come to expect, though I wake up every day hoping to be more limber. It's too early to say for sure how they'll be for the day.

Last night I thought I felt a slight cold starting. This morning, it's hard to tell. I hope it's nothing. I've been so lucky in that department all considered. I haven't had a cold or a flu for over a year now. When you consider how vulnerable my health has been off an on during the year, it's amazing really!

Yesterday I was so tired. We went to Don and Syl's for a lovely dinner and then, after we were home, I tried to stay awake for the Grammy's but couldn't do it. Pink's performance was freakin' amazing! I wanted to see Elton John and Lady GaGa perform but I can probably catch it on YouTube. Of course, I could have PVR'd it but that didn't occur to me at the time. DUH!!

I had a nice, long, thought-provoking chat with Hannah last night. She always has interesting thoughts and ideas to share. Her brain must be stretched to capacity inside her skull for all the interesting stuff going on in it. She's so inspired by theoretical thinking ... and memory ... and knowledge ... and history ... and visual arts ... and writing ... and the art of printed formats ... and ... well ... lots of things ... and yet she's firmly pragmatic. It's a wonder she sleeps. She's doing just fine and is so looking forward to her trip to New York on the 12th.

We talked to Luke briefly, too. His team, the Bellarmine Knights, had their first exhibition game on Sunday. It didn't go as good for them as they had hoped. He said the team didn't play very good in general and his hip pointer injury made it hard for him to pivot. Pivoting is important in lacrosse, especially for an attacker, which is his position. He needs to do some healing yet. He would have gotten home at 4 or 5 this morning. A long, late bus ride.

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Monday, January 18, 2010

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.
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Monday, June 1, 2009

Gritty Details About my Breast Cancer

For those of you who find my blog and who will benefit from the details about my particular breast tumour, I'm providing as much information as I know below.

I have Invasive Ductal Carcinoma. My tumour was 3 cm (about the size of a golf ball) and was grade 3 and located on the left side of my left breast. I'm at stage II breast cancer, though I was initially told stage III. I like the sounds of stage II better, so I'm sticking with that.

I had a sentinel node lumpectomy on March 18, 2009, 13 days after my diagnosis. Two lymph nodes were removed and they showed micrometastesis. My margins were clear, though very close in at least one area. For this reason, it has been recommended that I have additional surgery after my chemotherapy. As to what that will entail, we'll cross that bridge when we get there. Meanwhile, my medical team felt it was important to first treat my systemic system with chemotherapy because my cancer is an aggressive type.

My bone and liver scans were clear. Those were the only scans I've had aside from a chest x-ray and a MUGA (heart test), which they do to keep tabs on my heart because of the potential damage to it from one of the chemo drugs.

I started Chemo on June 10. I will be undergoing 3 cycles of FEC (three different chemo drugs ... Fluorouracil, Epirubicin, and Cyclophosphamide) followed by 3 cycles of Taxotere (another chemo drug), each treatment 21 days apart. A PICC-line catheter was surgically "installed" in my right arm through which to deliver the drugs and from which to take blood.

After my chemo, more surgery. After surgery, 6 weeks of radiation. After that, 5 years of a daily estrogen blocker (pills).

How was my tumour discovered?

In August 2007, I felt a big lump in my breast. It was tender and a bit inflamed on the outside. I saw my Doctor and he told me "no worries - it's a cyst". It did subside a bit but never entirely and I was always aware of it. Occasionally it would bother me. I mentioned it to my Doctor a few times and he assured me that it was nothing to worry about.

Last December I booked myself for a physical. I was due for one but I was also concerned about my feeling uncommonly fatigued, I could not keep my weight gain in check, I felt lethargic and not interested in doing a lot of the things I used to enjoy. I was sure something was out of whack. When I saw my Doctor I also reminded him about my lump and told him that sometimes it really bothers me and I was concerned about the possibility that it might burst. I asked him about a mammogram (again ... I'd been asking since my early 40s and he always told me I wouldn't need one until I was 50). I would be 50 in February and my Doctor was in no hurry to book me for a mammogram. He told me to wait until I get a letter from the screening program telling me it was time. Meanwhile, though, he did book me for an ultrasound to look at that cyst and he ran some bloodwork.

When my bloodwork results came back, my Doctor told me everything was perfectly normal. I asked him if perhaps some things were low or high normals that might account for the way I've been feeling. He said no. He asked me if I thought I was depressed. I said "no, though the way I feel is depressING". I asked him if it might be hormonal and if, perhaps, there's something we could do about that? I asked him what my hormone levels were. He didn't really answer that except to note that I haven't had any hot flashes, even though I told him that my Mom didn't get any so maybe I wouldn't either. He then looked me in the eye and he said, "There is no medical reason for the way you feel. Get some exercise!". I was so deflated after that. Yes, I know I need more exercise but I hardly have the energy after a day of work to even get off the couch. Very unlike me and very frustrating. I decided then that I would need to get a new Doctor and dig deeper because I KNEW something was NOT RIGHT.

Then, a few weeks later, I went for my ultrasound. The radiologist said it didn't look like a cyst so I immediately had a mammogram. Two hours later they were booking me for a biopsy. A month later, I was told I have breast cancer. SHIT!!

Also worth noting is that my surgeon commented that I have "very dense breasts". Breast density, I've since learned, is a risk factor for breast cancer. It is caused by estrogen gone wild ... unchecked by progesterone. I was told initially that my tumour was very small. It wasn't until the surgeon got in there that they found it was bigger than expected and that's mostly because, I believe, of the breast density. Dense breast tissue shows up white in mammograms. So do tumours, so it's hard to see the borders or even to detect tumours at all sometimes. If you think you might have dense breasts, make sure that your next mammogram is done using one of the new digital mammogram machines. They're better at detecting tumours in dense breasts. Some women with dense breasts get MRI's instead of mammograms.

I also learned that my tumour is estrogen fed. The estrogen in my tumour was at 100% and the progesterone was 15%. I did a little research on that and learned about "estrogen dominance". It, too, is a risk factor for breast cancer. The symptoms of "estrogen dominance" are almost exactly the symptoms I've been experiencing over the past 5 years ... fatigue, weight gain, dry skin, etc. Obviously my Doctor doesn't believe that women's hormones factor into anything. Obviously they do.

Other details about my tumour are that it is HER2 Negative.

As I learn more about my particular situation, I'll add them here.

Update: January 15, 2010:

I decided against having additional surgery. My surgeon supported that decision. I've finished chemo and radiation. I experienced many side effects and had lots of ups and downs but still got away without experiencing some of the nastier side effects.

My worst and most lingering side effect has been from the Arimidex (the estrogen blocker I was to take for the next 5 years). Six weeks after being taken off that drug, I'm still experiencing joint, muscle, and tendon aches and pains and troubles walking and using my joints in general. It makes me feel older than old and I often have to move very slowly and with limited range of motion. This side effect started almost immediately after starting on Arimidex toward the end of October but it wasn't until more than a month later that I finally figured out that problem wasn't related to the edema I'd been experiencing and that it was, in fact, a relatively common (30% of women experience this) side effect of the Arimidex! Amazing that the doctors know about this side effect but that it's not listed in any of the information that was given to me about the drug. So, for 6 weeks I was on Arimidex and now for 6 weeks I've been off of it ... 3 months of feeling like a decrepit, old thing!! I was told that my joints should be getting better by now but so far there have been no real improvements. I just saw an oncologist 3 days ago and I'm to try Tamoxifen instead of Armidex but I'm waiting another little while before I start it to see if my joints improve first.

My intention is to start back to work on a graduated schedule starting 4 weeks from now on Tuesday, February 16. I really hope my joints are moving normally by then and that my energy levels and strength improve considerably and quickly!
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