View Full Version : Tracey Update October 7

10-07-2009, 09:54 PM
Tracey was discharged yesterday from Hamilton McMaster Urology and Renial centre. She was happy to get home to her hubby and her 2 year son Luca.

Tomorrow afternoon I am taking her back to Hamilton for her third pharesis treatment. She has four more after that, then they will take the extremely unpleasant shunt out of her neck. Her chemo will be six treatments with a treatment every two weeks.

She reacted badly this time to the chemo. (sickness) It didn't seem to bother her much 5 years ago. She also had an allergic reaction to the pharesis treatment but they just put Benedryl in her IV tube and this seemed to help.

She is taking 10 pills @5mg of Pred each day. Her side effects of facial swelling and bloating are very extreme this time round as well. She is still is anemic and they have been injecting her with Aranesp. (I believe this is what it is) They told her that were trying to avoid too many blood transfusions just in case she needed a kidney replacement further down the road. (not sure why this would be a problem)

The pharesis treatment can only be done in Hamilton. She is also going to be part of a Canadian study group so she was pleased when she found out that there would be no charge for the expensive drugs that she needs.

After that she will be having her IV Chemo done at our local hospital in Guelph.

So thats where we stand today. A small step forward and better than we were this time last week.

I will keep the group updated and again many thanks to all of you for your support and prayers.

(This was Tracey a few months ago before the recent flare up.)



10-08-2009, 01:15 AM
Thanks for the update, Mike. I'm so glad she's out of the hospital. What a sweet picture of Tracey and Luca. :)

Regarding her reaction to pred : Not all MDs will agree, but some get it-- your body can take many years (if ever) to recover from the pred you've taken. Pred creates extremely severe adrenal deficiencies. If we didn't have Wegs and could boost our immune systems (eg, like people with cancer) we could take supplements and restore them over time. Tracey's body is starting 50 mg pred this time, but her adrenals are far less able to handle the dose. So 50 mg effectively acts like a much stronger dose.

I was off pred for 2.5 years but still felt like I was on it. For this current flare, I went on 5 mg and within 2 days my body reacted as if I were on 30 mg for a week! I can barely tolerate 4 mg now. Yesterday for my rituxan IV we had to do 125 mg solumedrol (IV pred) and I'm reacting exactly like when I originally had 1,000 mg IV pred in 2006. We have to repeat this dose at each rtx IV for the next 3 weeks. Ugh. :(

Tracey's reaction to chemo is similar. Chemo is very toxic to the liver and the body doesn't naturally detox it. So her chemo now is going into a liver that can't handle it as well.

When she's out of the woods and in better spirits, it would be good to explain all this to her. You had said she was in denial and didn't go to the doc until she was in serious bad shape. By getting to a doc at the first sign of symptoms, she might be able to avoid chemo and pred altogether next time, or at least do lower doses of pred. If you tell her that now of course, the pots and pans are gonna come flying at you! :D

10-08-2009, 01:44 AM
Yeah, Tracey and Luca are both sweet! Thanks for sharing the photo!

K├╝bler-Ross model - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model)

I agree with Sangye on the matter of denial. Tracey has a job just to heal at this point. Above, an article on the Kuebler-Ross steps into acceptance. Though there are five steps, I personally didn't go through bargaining or depression: they are just a guideline, I suppose, where denial heads the journey, and acceptance completes it.

I agree with Sangye, too, on the matter of getting to the doctor when symptoms to return. More likely than not, she won't be having a flare, but catching a flare early- like putting out a fire!- means the WG can be addressed with the least fuss.

We are interested in the study Tracey's involved in, and will kept posted in the months (years?) ahead for what comes of it.

10-08-2009, 01:53 AM
Thanks for posting that link. Doug. Though I've been working on all of it in therapy for over 3 years, a couple of the lines helped me make sense of some current struggles.

10-08-2009, 01:58 AM
Gad! Sometimes I forget that we all are still working through our own issues, medically, emotionally, financially, socially, politically, spiritually. Glad you got some value from it, too, Sangye! :p:)