Questions

[Guest guest]

hi Guys hope things are going well. I have a few questions here, and

here we go!

#1 Has anybody heard anything about a new drug called " Vensotiamine " ?

#2 when you start treatments how or does the treatment affect your

work, or do you work at all??

#3 canadian residents Has anybody been accepted by AISH , having

Berger's disease?

Thanks for any help you can give!!

CHRISTOPHER

[Guest guest]

#1 No, unless it's just the B1 vitamin called thiamine

#2 IgAN and its treatment should not affect your work much unless you had

advanced renal failure.

#3 As far as I know, AISH is a provincial plan in Alberta similar to what

Ontario calls Ontario Disability Support Program. It's an income support

program for people with long term disability who have no other income or

disability insurance, and who can't get Canada Pension Plan for whatever

reason. I doubt very much that you can get that for just having IgAN without

some other severe problem and/or advanced renal failure that is very

debilatating.. If it's like in Ontario, you can't have both the provincial

plan, and Canada Pension Plan (CPP) Disability Benefit - and the province

plan will make you apply for CPP. Dialysis qualifies a person for CPP

virtually automatically, but, other than that, you would have to be pretty

disabled to get any government disability. Sometimes, you might not qualify

for the federal CPP, but the provincial plan accepts you because it has less

stringent requirements. Berger's Disease is not one of them, unless there

are some significant, severe co-morbid issues involved.

Pierre

Questions

>

> hi Guys hope things are going well. I have a few questions here, and

> here we go!

>

> #1 Has anybody heard anything about a new drug called " Vensotiamine " ?

>

> #2 when you start treatments how or does the treatment affect your

> work, or do you work at all??

>

> #3 canadian residents Has anybody been accepted by AISH , having

> Berger's disease?

>

> Thanks for any help you can give!!

>

>

> CHRISTOPHER

>

[Guest guest]

Hi , I checked in our guru computer at our hospital and called one of

our pharmacists, regarding the vensotiamine, unfortunately no luck here either.

Do you live in the US? Do you know if it is an experimental drug? Any info

would help me to research it... just let me know. Bonnie

Cohen wrote:Hey :

1. I googled this - no luck.

2. The only time I have taken off from work was the day of and after my biopsy,

and the 5 weeks I was out of work after the tx. Other than that, I cannot

remember a kidney day off. Granted, I am a " pencil-pusher " (as my brother in law

calls me), so I sit at a desk a lot. However, I do travel and attend trade shows

where I am standing for 8-10 hours a day.

3. NJ has yet to seceed from the union, so I cannot help you there.

Good luck with everything. Hope Vendorboy makes it back.

wrote:

hi Guys hope things are going well. I have a few questions here, and

here we go!

#1 Has anybody heard anything about a new drug called " Vensotiamine " ?

#2 when you start treatments how or does the treatment affect your

work, or do you work at all??

#3 canadian residents Has anybody been accepted by AISH , having

Berger's disease?

Thanks for any help you can give!!

CHRISTOPHER

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Thank you

[Guest guest]

Don't know about Vensotiamine. My son worked through 6 months of

cytoxan and prednisone. He preferred doing the monthly treatments on

Fridays, but that didn't always work out. He would be particularly

tired the next day or two days after the infusion, but it wasn't

unmanageable. Of course, it probably helped that he's 24 and otherwise

healthy.

Betsy

> hi Guys hope things are going well. I have a few questions here, and

> here we go!

>

> #1 Has anybody heard anything about a new drug called " Vensotiamine " ?

>

> #2 when you start treatments how or does the treatment affect your

> work, or do you work at all??

>

> #3 canadian residents Has anybody been accepted by AISH , having

> Berger's disease?

>

> Thanks for any help you can give!!

>

>

> CHRISTOPHER

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

> supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

>

>

[Guest guest]

Barb,

It depends on what chemo you are getting. Mine was an IV push and took about 5 min. but there are ladies here where they have an IV drip and it takes a few hours. I didn't feel anything during the treatment and was ok afterwards. Just had a little nausea and the Compazine took care of that. Its a good idea to take someone with you. Especially to the first treatment. I was not in a room with anyone else. But I do know there are a lot of oncologists that have big rooms with comfy chairs where the patients get their chemo. My onc did a blood test before every chemo. I think this is pretty much the norm. Your onc will give you a list of things to watch for. ALWAYS call if you start running a temp.

I will keep you in my prayers.

Hugs

nne

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Questions

I really liked the list that was made of things to bring to chemo, but could you tell me a little more about the actual treatment....?How long does it usually take?Do you feel anything during treatment?Should I bring someone with me? For company? Or because I can't drive myself home?Are you usually in a room with others getting chemo?How often do you have to go back for blood tests? Are blood tests done routinely or when you aren't feeling well?Any specific things you should watch for at home after treatment that says.... Call your doctor?I still have not heard from the onc when treatments will start. Had a PET/CT scan yesterday as there was a spot on my liver they wanted to check out. Other tests, I assume, were ok. PET takes 2-3 days for results, so I'm in a holding pattern yet again.Thank you for your responses in advance.Barb

[Guest guest]

Barb,

Some of these you should really ask your onc about. As for taking someone

with you, I do. I am given something to help me relax so they don't want me

driving afterward. My chemo is given in a large room, but it's divided by

particians and curtains, so I feel like I'm in my own room. As for calling

my doctor, my rule of thumb is, if I am questioning it, I probably should

call. After all, that's what I'm paying for. If your onc is worth a grain

of salt, he'll want you to call. Mine is wonderful and answered all of my

questions. I didn't and don't get run thru his office like cattle. He

spends a lot of time with me, as he does with all of his patients.

If I were to offer any advice, it would be to try and relax. Do whatever

you can to make things comfortable for you, no matter how " silly " others may

think. For myself, I decorated a baseball cap to wear when I have chemo,

but it's been upgraded to a tiara. I wear it on all of my caps. My rule of

thumb is when I have a " No Hair Day " I absolutely, positively MUST wear a

tiara. It's fun and I get a lot of smiles. I even carry myself

differently.

Hugs

Lee Anne

Reply-To: breastcancer2

To: breastcancer2

Subject: Questions

Date: Tue, 28 Mar 2006 13:44:21 -0000

I really liked the list that was made of things to bring to chemo,

but could you tell me a little more about the actual treatment....?

How long does it usually take?

Do you feel anything during treatment?

Should I bring someone with me? For company? Or because I can't

drive myself home?

Are you usually in a room with others getting chemo?

How often do you have to go back for blood tests? Are blood tests

done routinely or when you aren't feeling well?

Any specific things you should watch for at home after treatment

that says.... Call your doctor?

I still have not heard from the onc when treatments will start. Had

a PET/CT scan yesterday as there was a spot on my liver they wanted

to check out. Other tests, I assume, were ok. PET takes 2-3 days for

results, so I'm in a holding pattern yet again.

Thank you for your responses in advance.

Barb

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[Guest guest]

Thanks, Lee Anne. I hope I can maintain such a positive approach. I just wish things would get rolling. The waiting is the hardest.... so far. <s>

Barb

RE: Questions

Barb,Some of these you should really ask your onc about. As for taking someone with you, I do. I am given something to help me relax so they don't want me driving afterward. My chemo is given in a large room, but it's divided by particians and curtains, so I feel like I'm in my own room. As for calling my doctor, my rule of thumb is, if I am questioning it, I probably should call. After all, that's what I'm paying for. If your onc is worth a grain of salt, he'll want you to call. Mine is wonderful and answered all of my questions. I didn't and don't get run thru his office like cattle. He spends a lot of time with me, as he does with all of his patients.If I were to offer any advice, it would be to try and relax. Do whatever you can to make things comfortable for you, no matter how "silly" others may think. For myself, I decorated a baseball cap to wear when I have chemo, but it's been upgraded to a tiara. I wear it on all of my caps. My rule of thumb is when I have a "No Hair Day" I absolutely, positively MUST wear a tiara. It's fun and I get a lot of smiles. I even carry myself differently.HugsLee AnneReply-To: breastcancer2 To: breastcancer2 Subject: QuestionsDate: Tue, 28 Mar 2006 13:44:21 -0000I really liked the list that was made of things to bring to chemo,but could you tell me a little more about the actual treatment....?How long does it usually take?Do you feel anything during treatment?Should I bring someone with me? For company? Or because I can'tdrive myself home?Are you usually in a room with others getting chemo?How often do you have to go back for blood tests? Are blood testsdone routinely or when you aren't feeling well?Any specific things you should watch for at home after treatmentthat says.... Call your doctor?I still have not heard from the onc when treatments will start. Hada PET/CT scan yesterday as there was a spot on my liver they wantedto check out. Other tests, I assume, were ok. PET takes 2-3 days forresults, so I'm in a holding pattern yet again.Thank you for your responses in advance.Barb_________________________________________________________________On the road to retirement? Check out MSN Life Events for advice on how to get there! http://lifeevents.msn.com/category.aspx?cid=Retirement