Tuesday, March 03, 2009

Now we know more

My oncologist and I went over the MRI results today. She ordered it in the first place so it makes sense for her to discuss it with me. Her suggestions and conclusions are different than my family doctor's.... in a good way :)

She doesn't think that I have arthritis. Instead, she thinks I have arthralgia, which is arthritis-like pain but that isn't actually arthritis, and is a side-effect of the Femara. In other words, the hip and back pain is a side-effect of the Femara that I've been on for 2 1/2 years. I've had pain in my thumbs, wrists, and ankles for some time now, and it's possible that the longer I'm on Femara, the larger the joints affected by this side effect.

The best way to determine whether the pain is arthralgia or arthritis is to go off the Femara completely. But the Femara is working - my tumour markers are down and my scans show no new cancer - and so it doesn't make sense to off the Femara. Sure, I could go on another hormonal treatment.... but why stop the one that works *before* it stops working? And what if the next treatment didn't work? I'm not willing to take a chance on letting my cancer spread further right now, so we're not going to stop the Femara.

Not that it matters much whether it's arthralgia or arthritis... my oncologist said that they treat arthralgia as though it were arthritis. The kicker is that there aren't really any modern medical treatments for it. However, my oncologist doesn't want me to live in pain and wants us to think outside the box on treating the pain by exploring non-modern/non-Western treatments like acupuncture, massage, hypnosis, Lakota or glycosamine/chondroitin, and possibly physiotherapy.

At this point, I just want this pain to go away. Having to live with constant pain is no way to live. Therefore, I'm willing to try things to get rid of it that I might not have considered before. To start, I think I'm going to begin taking Lakota or glycosamine/chondroitin. I'll have a chat with my pharmacist tomorrow about these remedies to figure out which might work better for me and to also be sure that the remedy won't interfere with my current medications.

Next, I'm going to see about getting some acupuncture done. My oncologist said that people have had very good results with it as long as the practitioner is experienced. She said that it is very important that I find someone who has years of experience not just in practicing acupuncture, but also in treating this kind of pain. Otherwise it might hurt or it won't give the right kind of benefit for me.

All I have to do to make this second step happen is to find someone who can do it. Normally my oncologist would just refer me to someone but she doesn't know anyone in the area who's got enough experience. I get to be the guinea pig here :) . I'll check with the cancer support center (Hopespring) where I go for my meditation classes; I'm hoping that they'll be able to refer me to someone in the area (or even tell me who might not be suitable). If that doesn't work I'll let my fingers do the walking on the internet and phone. If my experience with the person and treatment is positive, then my oncologist might refer other people to that practitioner.

In addition to these two new approaches, I'm still going to try and lose some weight and I do still want to do some aqua-fit to get some exercise. Hopefully, between all of these measures, the pain will go away. Cross your fingers!

Oh - and if you're interested in the actual scan results, the MRI showed that I have some slight disk bulging issues at my L4-L5 vertebrae. The bone scan also showed, for the first time, that I have some bone degeneration at L4-L5 to go along with the known degeneration at L5-S1. I was surprised at this; I didn't think that vertebrae degeneration would start marching up my spine like this. Weird.

The bone scan also showed increased takeup in my knuckles, wrists, and ankles which corresponds to the areas where I already had joint pain. I'm sure that increased takeup will show up in my hips one of these days, even though nothing showed up this time. The bone scan also showed increased takeup in my left knee, which is the one I think I broke ages ago. Interestingly, this is the first time that the report has mentioned the left knee since... well, since the very first bone scan I've ever had. I re-started Pamidronate before the scan and maybe it's healing these areas, causing the increased uptake.

And that's it! I'm feeling WAY more positive today. Not only might I not be in pain forever, but there might  be things I can do NOW to lessen the pain. That's the kind of news I love! I also have to say that I'm really, really happy with my oncologist's approach to this whole thing. She was positive and determined to help me find a way to deal with the pain, which is a helluva lot more than my family doctor gave me yesterday. Yesterday, I was left with the prospect of being in this agonizing pain forever with no hope of it lessening. Today, I'm hopeful that there might be a way out from the pain. I know that nothing is guaranteed, but I have hope. I love my oncologist - she's AWESOME!

1 comment:

The Hyperlexian Aspie said...

wow - better news than yesterday... but based on the same info, oddly. makes me think that doctoring is an art as well as a science in some ways.

i hope these alternative treatments work for you. it sucks to have the pain on top of the cancer. i'm glad the pain isn't caused by the cancer, though.

love,
vicki