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BCG (#5) administered have concerns...

11 years 9 months ago #4096 by Rosemary
Sandra,

I am so glad to hear that you are feeling as much control as you can over this thing. As they say "knowledge is power".

The best that I can tell you right now, is that I know how you feel. I was way more uncomfortable with bleeding, and burning than most people here seemed to be. I don't know what that means, but as you say, we can always dream that this will help somehow and it will turn out all right.

I'm glad that you are communicating well with your Doctor, too. Please keep me posted as to how it is going. I go in next week for my poke and peek and then begin again with the 2nd round of 3 BCG's (#10). I hope my bladder has had a chance to catch it's breath......whew...

I'm in there with you, Buddy
Your friend,
Rosemary


Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 9 months ago #4092 by Sandra
Hi Rosemary:  I spoke with my Uro Research Oncologist, Dr (Maj) Brassell, at Walter Reed.  He informed that the Chemo nurse was to have dip sticked my urine each week before sending it the lab (that has not been done - no not once).  He said I have no infection but wanted his orders followed this Thursday(week 6) instillation - he would be in surgery but would expect a page if there was any confusion in following his orders.  I choose Dr Brassell after a less than diserable experience at DeWitt Army Hospital...my care there or lack of it cost me two TURBTS in five weeks.  

Anyway, after having spoken with him and reading your responses I am good to go for tomorrow.  I am looking forward to finishing this series as the first 3 to 5 hours (week 3, 4 and 5) have been very painful - when it just gets down to the burning and blood in the urine - that's a good thing!  He also said not to take the Detrol that the PA ordered last week, he said it would do me absolutely no good for the symtoms and pain I am experiencing.  

I am scheduled for my six week "poke and peek" on April 11th and hoping above all for Good Results...but with TA Grade 3 (6 tumors - 2 of which were more than 4 cm each- already resected in 2 TURBTS just 5 weeks apart)..I feel like it might be a lot to hope for.  But everyone seems so encouraging here - I can dream.  Right now I am so looking forward to a few weeks break from all of this.  Thinking about taking a trip...even to NYC shopping sounds wonderful right now.  

Thanks for your reply BC friend,
Sandra

Sandra
"Grandmothers are just antique little girls...."

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11 years 9 months ago #4019 by Rosemary
Sandra,

It looks like your first urinalysis was okay, but got increasingly worse? Last urinalysis unknown?

I am just basing my opinion on what my doctor told me.  He said that anything above 3 RBC's was not within the normal range.  My doctor is very conscientious about viewing my urine himself before my BCG treatments.  He does not leave this decision to the Nurse.  He looks at the urine with his own eyes to make the determination.  

You should not receive BCG's if you have infection.

I know what you are going through, and I wish I could tell you that it gets better.  It sounds like you and I had similar experience with burning and bleeding.  

Also, I am a military brat, and I know that sometimes the military hospitals are not as conscientious as they could be.   I am basing that comment on my own experience and nothing else.  I spent many an hour as a child in "sick bay" and I have deep seated impressions of how people could be treated.  Perhaps that has changed.  I hope so.  

Good luck,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 9 months ago #4018 by Sandra
Hi Rosemary and thanks for your reply.....I will put in a call to my Oncologist tomorrow as here's my RBC and WBC by date:

Feb 22 - Unknown - received 5th dose of BCG
Feb 15 - RBC 23 WBC 6 - received 4th dose of BCG
Feb 7 - RBC 23 and Epithl Cel Squa 1 - received 3rd dose of BCG
Feb 1 - RBC 3 WBC 3 - received 2nd dose of BCG
Jan 25 - received no report - received 1st dose of BCG

Obviously they work from labs for the week previous not the current. I believe that my RBC last Thursday 2/22 would have been much higher than 23 but will not know until Mar 1 when I am scheduled for my 6th dose of BCG of which I am scheduled for NO labs. From what you said about RBC higher than 3, then you are certainly correct about my care. I will be far more assertive this week. Thanks for your response.
Take care,
Sandra

Sandra
"Grandmothers are just antique little girls...."

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11 years 9 months ago #3997 by Rosemary
Sandra,

Your experience at the Army hospital when compared to my own BCG experiences does not sound fully conscientious.

According to my doctor, you should not have more than 3 red blood cells in your urine on the DAY OF BCG ADMINISTRATION. If you have an infection (as could be indicated by white count) you should not have your BCG treatment!   It sounds to me like the Army hospital might need better controls over BCG instillations.  Please definitely discuss this with your doctor before you have your next BCG treatment. 

Please do not let the PA or nurse give you BCG's when you have blood in your urine until you have fully discussed the situation with your Doctor.

As far as bleeding during treatment goes, I always bled more than I was comfortable with.  I did report it to the doctor and as long as the blood cells were less than 3 on the following week of treatment,  he would proceed.  I did burn terribly also, but never had the tissue or clots, but my understanding is that this is not really anything to be concerned about.  However, I would report all symptoms to the Doctor and have it documented.

Your BC buddy,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 9 months ago #3995 by Sandra
Hi All:  I just finished by 5th dose of BCG last Thursday...When I arrived for my 4th dose the Chemo nurse said I had Blood in my urine but not to worry.  But from what I read here BCG is not usually administered if there is blood in the urine.  I consequently discovered that she does not wait for the current Blood and Urine labwork before administering BCG, she uses the Labwork from the week previous.  This all seems quite unusual to me.  This Thursday when I arrived I had my Lab work done and then went to her office and told her that the urine this week had much more blood in it than the week before....she called up the week  before and said there was an elevation of white and red cells but that she would have the Physician Assistant come speak with me of which he did AFTER she administered the BCG.  My husband on the other hand went to the Oncology floor to ask for my Doctor, but he was in surgery and not expected out for hours.  Also, it's the Army..... So this is worrisome to me.

Secondly, after I leave the hospital and on my way to the hotel (because we live 100 miles away), the pain begins.  It is like my Urethea is turning inside out and this last for at least 3 to 4 hours with no more than a drop of urine.  The Physician's Assistant gave me Detrol before I left the hospital but this did not help and neither does Pyridium.  What I have noticed is that after 3 or 4 hours (and 16oz of cranberry juice, 34 oz water) I pass a considerable amount of "trash" (clots, what looks  like stones, tissue etc) and urine....then after this it's just the burning etc which is tolerable and somewhat relieved with pyridium.  Has anyone experienced this and if so what helped?

Luckily I only have one more BCG (#6 - Yeah) next Thursday and then a break....Thanks to anyone who can help...

Take care,
Sandra

Sandra
"Grandmothers are just antique little girls...."

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