Friday, November 20, 2009

You Have To Stand Up

One thing I've learned since my husband has been a cancer patient and I've taken on the role of caregiver, is the importance of this designation. The importance is not for me, but most definitely it is very important that I do my homework and know what's happening in the world of kidney cancer, in order to be the best caregiver that I can be for him.

I previously mentioned how all cancer patients need advocates to act on their behalf. If it is not your spouse or partner, then maybe a close relative or friend with whom who have a very trusting relationship. It has to be someone who just does not sit by the way side and waits for the medical expert's next move, but you have to be that someone who is informed and willing to speak up for the patient whom you represent.

Today, I was informed, prepared and pleading my case.......on behalf of my husband.

What is she talking about you ask? Over the past few days, I have been researching all of the latest info on kidney treatments, government approval of RCC fighting drugs, their availability, side effects, pharmaceutical manufacturers and how these treatments actually help to fight the cancer. I record the generic name and the trade name.....for example, Sutent is the trade name while sunitinib is it's generic shadow. I want to ensure that I'm aware of each of these names for when my husband's oncologist discusses any of them, I know exactly of what he is speaking. There are quite a few new treatments out there now over the past two to three years..such as

Torisel - temsirolimus
Nexavar - sorafenib
Avastin - bevacizumab
Afinitor - everolimus
Votrient - pazopanib

and the list goes on, with more being tested in ongoing clinical trials.........

NOTE: I have recently signed up to receive Google Alerts re: kidney cancer via my email and constantly receive all of the latest information on that topic. It is a great resource of information.......thanks Joanne for telling me about this!!!!

I always obtain a hard copy of my husband's latest test results, whether it be a CT, MRI or ultrasound. Why??? I'm no medical expert and while I cannot understand alot of the terminology, I can compare one test to the other and having a copy always allows me the opportunity to read what's happening in detail without wondering.

I always have a note in hand that I prepared the day before. I have learned that no matter how much I think I might be able to just ask the doctor a particular question or questions, if I don't have each one written down, then guaranteed, it will not get asked. There's just too much info whirling around the clinic on any given appointment day, and there's just no way I can remember what I need to ask, other than to write it down first.

We don't rush out of the clinic learn that over time and you take your time and ask what needs to be asked and listen to every word that your onc has to say. Ask him/her to repeat anything or explain everything that you do not understand. It's your cancer, so take lots of time at any appointment and don't ever rush through it.

Your oncologist may NOT be aware of some of the newest treatments that are out there, so don't be shy in advising him/her about them........

Be informed and know the will most definitely help!

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