Author Topic: Glad it's over!!!!  (Read 18112 times)

Sjenny

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Re: Glad it's over!!!!
« Reply #45 on: February 05, 2009, 07:04:01 AM »
Epson:

I'm so sorry for all you are going through - like everybody else, I really appreciate and am uplifted by your great sense of humor.

According to what I read, BCG treatment is very effective and studies show that BCG demonstrates long term protection from tumor recurrence, improves bladder preservation and increases survival significantly.

I'm curious about the fact that since BCG works by stimulating the immune system to fight the cancer cells and Sjs is generally treated by dampening the immune system, how your doctors will work this all out - but Sjs is the least of your worries, I'm sure.  Are you takng Plaquenil and can you still take it while being treated with BCG?

Hugs,
Sue

Nathan

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Re: Glad it's over!!!!
« Reply #46 on: February 05, 2009, 08:30:56 AM »
Sorry to hear about the new cancer Epson. Here's to hoping you beat it! We need our comedian around

I'm curious about the fact that since BCG works by stimulating the immune system to fight the cancer cells and Sjs is generally treated by dampening the immune system, how your doctors will work this all out - but Sjs is the least of your worries, I'm sure. 

BCG is also what Faustman Labs is experimenting with to cure Type 1 Diabetes. They're going to try it in other AI conditions, including SjS.
http://www.faustmanlab.org/ for more info.

Chana M

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Re: Glad it's over!!!!
« Reply #47 on: February 05, 2009, 09:04:25 AM »
Epson, dear friend

All your friends are thinking about you and, unbeknownst to us all, so are complete strangers.  My daughter phoned to tell me about an odd conversation she had with her college tutor.  Now bear in mind that this took place in a Cambridge college, complete with 14th century quadrangles, college porters, and all sorts of odd rules and regulations. 

Her tutor asked Ruby, 'Did you see the huge phallus?'. (I'm not sure I'm allowed to use that word - moderators please check! - but that's the technical term Cambridge tutors use.)  Rather perplexed, Ruby asked 'Which one?'.  The heavy snowfall on Sunday/Monday/Tuesday encouraged some people to make snowmen and others to be a little more creative, including a group of Cambridge undergraduates who created an enormous, and anatomically correct, penis in the middle of the main quadrangle of college.  The master saw it and ordered the porters to destroy it; obviously the man has no sense of humour, or maybe he was threatened by its size?

I thought that the idea of an ice version of your most painful place might help in those cheese grater moments.

Take care

« Last Edit: March 12, 2009, 02:43:17 PM by quiger »

pudmott

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Re: Glad it's over!!!!
« Reply #48 on: February 05, 2009, 12:04:13 PM »
That is too funny chana

and im sure will help epson in those cheese grater moments

Epson buddy i hope the edges of the cheese grater are weary down for you now

keep fighting the good fight buddy

Pud

Dolly Dimples

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Re: Glad it's over!!!!
« Reply #49 on: February 05, 2009, 02:01:43 PM »
   To all that has been said Epsom, I send my wish and prayers to you for a speedy recovery,
  With your  "greater" wit and humor you will get through this all this .
               
                                   Keep at it , cheers Dolly
         

Epson

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Re: Glad it's over!!!!
« Reply #50 on: February 05, 2009, 02:18:55 PM »
Chana:   Next time the students build an anatomically correct snowman have them put a cystoscope in the penis, for badder cancer awareness week.

Sue:  This is an interesting question that I am pursuing an answer for.  I will let you guys know as soon as I find out.  Right know my dad is in the hospital again and I have been focusing my attention on his medical condition.

If I have to stop using Plaquenil for a month or two, no big deal to me, Sjogren's is a walk in the park compared to bladder cancer.

Thanks to all for your kind comments and prayers.

I must say that I am surprised that a new tumor sprouted up so quickly, I mean I know that there was a 65% chance or a tumor returning or a new one, but in three months :o
« Last Edit: February 05, 2009, 02:25:00 PM by Epson »

Sjenny

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Re: Glad it's over!!!!
« Reply #51 on: February 05, 2009, 03:44:11 PM »
Epson:

Actually (as Nathan reminded me) if Faustman's hypothesis is correct (and the research is promising, although too early in the process to tell), BCG would be an effective treatment for Sjs too.  Wouldn't it be great to slay the two dragons (stop cancer and cure Sjs) with one stone, so to speak?

Sue

Epson

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Re: Glad it's over!!!!
« Reply #52 on: February 05, 2009, 04:34:46 PM »
Well, they have been talking about curing cancer in mice for as long as I can remember and we still don't have a cure, but we have found ways to keep people alive through various treatments.

I am aware of Dr. Faustman's hypothesis, she is a hero among mice ;D

eyeamdry

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Re: Glad it's over!!!!
« Reply #53 on: February 05, 2009, 07:34:21 PM »
Epson, I'm sure you don't want any more "I know so and so."   But, I'm going to give you another.  Our good friends of 40 years, both husband and wife, had cancer at the same time about 20 years ago.  The wife had ovarian cancer, a particularly rough kind of cancer and the husband had bladder cancer.

Both are now in early 60's and living a good life.  Neither had any recurrence of their cancer.  I hope this tumor will be your last one.  Lucy

Epson

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Re: Glad it's over!!!!
« Reply #54 on: February 05, 2009, 10:39:13 PM »
Lucy,

It's always good to hear something encouraging and I know this must sound strange, but I have some of the worst luck, if there was no such thing as bad luck, I wouldn't have any luck at all.

The discouraging thing is to have another tumor so soon after the first one and all of the complication I have had related to the first operation.  Since late October I have not had a day when my urinary tract and bladder did not hurt and my back surgery that I had was a complete failure.  All of this has pissed off the Sjogren's monster and I can barely walk or use my right shoulder.

But other then that, things are great, can't wait for the next big blizzard, I need another 4 feet of snow piled up around the house ;D

wednesday mc haggis

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Re: Glad it's over!!!!
« Reply #55 on: February 06, 2009, 06:33:35 AM »
chana  roflmfaooooooooooooo  class! man needs to let his arse cheeks flap a bit eh ??:)

Epson   hang in there me friend, my friend said to me other  week" only the good die young and on that hypothesis you must be eternal "  cheeky bugger lolololol    ;D

Joking aside it aint an easy time, nbow way round that, and no one can know how you feel but you, but and yes there si always a but, it is treatbale, and fact it was detected again so quickly just means its getting picked up on quickly and getting treated all the more speedily, its wehn cancer teturns and no oen susptected it and it lies undetected, right now they know about it, its localised and its being treated aggressively , cancer never likes that , my friend`s niece had cancer tumour on the kidney , she fell over in the snow and when a massive bruise appeared they x rayed and found a tumour, she was 5 years old, they treated it and it came back, they treated it again, and while she did get alot of check ups, she is now last time i spoke to that friend at university doing mathmatics , its a traumatic thing to go through and your going to get scared, the treatment a nightmare ,and it IS an ordeal ,but so did she and she is here alive and well 14 years on 


T x




Sandra

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Re: Glad it's over!!!!
« Reply #56 on: February 06, 2009, 07:32:23 AM »
Epson, sorry for everything you have been through. My father was told about his bladder cancer "if there is a good cancer , this is the one to have". My Uncle, dad's brother also had the miserable problem too. Both of my dears died at the ripe old ages of 87 and 90 of life and age. This is the cancer to have and the BCG does work very well. My sister-in-law's mom also had/has it and with the BCG treatments is living a normal life. And just think how dangerous your weapon will be after each treatment (TB virus and all)......that's something to brag about....I do wish that each 3 month app will become easier, what you have been through sounds terrible  :'( there are different size cathiders, I know with dad they had to use smaller ones.....hope the sjs settles down too, it's hard to be positive or cordial when everything hurts! Sending all the best to you, Sandra
PS will try to keep my geese at home in the future

Epson

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Re: Glad it's over!!!!
« Reply #57 on: February 06, 2009, 05:39:55 PM »
Well, the doctor called today to answer my question about using Plaquinil and having BCG therapy.  After speaking with several pharmacists at the Cleveland Clinic, no one could tell him if it would be effective or safe to use BCG.

Guess we will be using plan B, an alternative medicine which it interchangeable with BCG, I think it is called Muteami Cell?

irish

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Re: Glad it's over!!!!
« Reply #58 on: February 06, 2009, 09:27:49 PM »
Epson, It is really a tough path that you are trodding on now and I will continue to keep you in my thoughts and prayers.

Also, sorry to hear that your dad is in the hospital. Like you need anymore to worry about right now.

I am wondering if your back surgery was unsuccessful because of the sjogrens---or maybe just a not so good doc???? Also, I am so sorry that you are suffering so darn much with the bladder pain. Is this from the cancer, the surgery or from sjogrens? The darn sjogrens affects the mucus membranes and I think it really makes them super sensitive. Have you been able to take pyridium? (the pill that turns the urine orange) Does ibuprofen help the bladder and urethre pain at all?? Sometimes with the inflammatory process ibuprofen will knock the pain down some. There is something about bladder and urethral pain that just makes a person feel like they are chewing on nails.

Will be glad when you can start your BCG treatments. I know that there are a lot more meds out there now. I know a guy about 64 that had cancer 3 times and would have his treatments(not BCG but some other new drug) and he has not had a relapse now for at least 5-8 years.

You have got me thinking about how good our generation has it. People used to die at 30 from pneumonia and now we get the priviledge of a longer live span so we can have all this new "crap".

If you want another 4 feet of snow around your house I can sympathize with you. I feel the same way. Let the snow stay high and keep the winds out. Our heating bills have been terrible and we really keep our thermastat on low. We got once of those Eden Pure heaters(the 1500 watt one). It was spendy but it one of the best investments we have ever made. I can't tell how much it has affected our electric bill because of all the new charges and increased taxes but I know that the furnace doesn't run as much during the day when it's on. Hubby sits with it facing him and his legs up on it at night like a footstool. It is so warm I don't know how he stands it but he is a skinny fellow. Take care. Irish ;D

ruby52

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Re: Glad it's over!!!!
« Reply #59 on: February 07, 2009, 05:39:12 AM »
So sorry Epson.That is just to much bad luck for one person.I wish you the best.
                                                                           Ruby