Traceys's Update Saturday Oct 10

[Mike]

All seems to be going well for Tracey. She is being injected with Aranesp (darbepoetin alfa) and her red cell count has increased daily.
She is feeling stronger and all of her chest pains have disappeared. She is taking Chemo three times a week and 50mg pred daily. Next week is the last of the plasmspharesis treatment.

She has received two different opinions on taking the flu and H1N1 injections while she is on Chemo.

Any thoughts on this one?

So we are ALL feeling a whole lot better than we were this time last week.

This weekend is our Canadian Thanksgiving. This year we have a lot to be thankful for.

All the best,

Mike

[Sangye]

Happy Thanksgiving! A lot to be thankful for, indeed. I'm so relieved to hear how well Tracey's treatments are going. Just being anemic (even w/o Wegs) is enough to make one feel pretty low.

I'm curious about the 2 different opinions you've gotten regarding vaccinations.

I strongly believe everyone should make an individual decision. I've decided not to do any of the shots, for these reasons :

1) The level of protection given by the seasonal flu and H1N1 vaccines is quite low at best for immune-compromised people. The package insert says they're 70-90% effective in healthy people who are (roughly, I forget the exact number) between the ages of 10 and 65, and where there is a good match between the strain in the vaccine and the strain one is exposed to .

So these factors must ALL line up in order to get into the 70-90% range :
* must be healthy
* must be the right age
* must be exposed to the same flu strain as in the vaccine (a mutation won't work)

For any vaccine to work, you must have a competent immune system to produce antibodies. With those facts alone, how likely is it that we Weggies will be protected at all?

2) My exposure is low.
I live alone, don't work, use hand sanitizer/wash hands like a fiend, and can generally minimize my exposure, so even on chemo and having spent the last 4 winters MUCH weaker than I am now, I've only had 2 colds in 4 years.

3) Too many unknowns
* They contain other ingredients that are known to cause damage (eg, mercury, formaldehyde).
* The vaccines were rushed through safety trials, which consisted of a few hundred people for a few weeks.
* Little to no data is available on the long-term safety.

4) Too much profit involved + no liability = trouble
*The manufacturers are hugely profiting from this vaccination campaign. The last 2 years there was a large surplus of unused flu vaccine, leaving them with a big tab.
*The manufacturers are protected against any lawsuits stemming from vaccine damage.
*The H1N1 vaccines are being marketed with a fear campaign that is disproportionate to the actual statistics about the flu (ie, that it is overwhelmingly milder than even the seasonal flu).

I don't suspect a conspiracy, I just think we can't get an honest picture when there's so much money to be made.

5) I'm a chiropractor and know my body and how much wiggle room I have with Wegs at this point. I know how to use supplements to bump myself out of an infection without stimulating the Wegs. I could never advise another Weggie on how to do the same thing because it's very individual, and very easy to flare up Wegs by boosting the immune system.

Vitamin D has been shown to prevent and lessen flu and will not stimulate Wegs. Most of our docs put us on D anyway.

So given all this, I feel the risk-to-benefit ratio isn't in my favor. But like I said, everyone has to balance that for themselves.

[Jack]

Great news about Tracey.

Most of us have been through rough periods, but there is light at the end of the tunnel and a reasonable standard of life can be expected once the docs have got it pinned down a bit.

As far as flue jabs - I'm not too sure what the situation would be while she is so heavily immune compromised, but personally I have them every year. I have a much less informed background than Sangye, but with two children at college bringing back every known infection I feel I need all the help I can get. I have a feeling that the rough patch I'm currently going through is due to a cold, but my normal symptoms include cough, sore throat, headache etc. so its hard to tell!

[Sangye]

Yes, it's a very different risk to have kids in your house bringing home unwanted "friends."

[andrew]

I have a differing opinion from Sangye's on vaccinations and it's purely selfish. My life is pretty much completely opposite to Sangye I meet and interact with many, many people during the working week and I'm hardly ever at home (just ask the Mrs!!). Many of the people I meet are sick and there's no way I can avoid it. I'll do anything I can to try and prevent myself getting sick (including telling sick people to $#&@#*@ go home!!). Even if a vaccination is only ten percent effective, it's ten percent more effective than I would have had otherwise. I also take vitamins and eat (mostly) healthy stuff and get exercise as much as I can. As for points 3 and 4 that Sangye makes, it has certainly crossed my mind but again it's a risk vs benefit and at this point in my life I'm shooting up as much as I can

[Sangye]

I especially like your "staying well" tactic of telling others to @#^&$% stay home! The news should add that to their list of "What You Can Do to Avoid the Flu."

You're in a totally different situation than me. Other than sitting in a crowd of a couple thousand yesterday (to see the Dalai Lama in DC), the only large groups of people I encounter are on tv!

[jola57]

I'm with Andrew with this one. These shots are made to shield us from diseases, they are not foolproof but are better than nothing. Look at polio, measels and other diseases that have almost been eradicated because of vaccines. I have trusted medicine with my children's health, and now my own thru the various drugs being given to me so why wouldn't I trust the vaccines now.

[Doug]

I've been wishing all my Canadian friends a Happy Thanksgiving, and completely forgot to wish my Canadian friends on this site the same! To all of you north of the border, may the blessings of this season come you way, may the next year find you and you loved ones doing better with our Best Friend Forever, and may the "new normal" in your lives match, as close as possible, your lives before Wegener's granulomatosis. Now eat yerself senseless, and drink too much beer and wine. Do whatever Canadians do on this holiday, and do it better than ever before!

[coffeelover]

Sangye brings up some very valid points. I have a couple of sisters in the medical field who would agree with her.

I, like Andrew, am around way too many people so I have the flu shot already and will plan to get the H1N1 when it becomes available. Of course at my rhuemy appt tomorrow, I will ask her opinion on the subject.

I employ people and gave them permission to call in sick if they get the flu. or flu like symptoms. My only request of them was they will not be coming back to work after only one day, I am expecting them to take off at least 3 days. I, too have the largest bottle of hand sanitizer at my work area that I encourage all to use and I wash my hands so often they are dry already. Winter has not even started yet! Never mind the snow we got here a day ago and two days before that. Only in MN can it be 100 degrees one day and snowing the next! Makes life interesting.

I am glad to hear about tracey getting better. I have not been online for a while, so do not know the whole story, but always happy when there is progress in the right direction.
coffeelover.......now adding the milky foam. Nummy!

[jola57]

Thank you Doug, I stuffed myself with turkey, duck, cranberry sauce and pumpkin soup and all other trimmings. MMMMMM, wish you all US citizens all the same next month.
Same here Lisa, when some one is getting a cold they stay away at least 3 days for my sake and I make liberal use of my sanitizer not just on my hand but swirl it into my nose too.