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Losing control of lives

13 years 7 months ago #1699 by DebTN
Hello to all!! Well I've been very busy with our business and my husbands appointments and etc. but I finally am taking the time to post our update.
After a week and a second ultrasound the orchitis was improving greatly but the culture showed e-coli again. The urologist said he didn't think my husband would get rid of the e-coli because of the stent but added that he had improved to the point that he felt IM injections of Rocephen for 10 days would be the best approach. After we left his office we meet with our Oncologist and she immediately said that she felt it was time to begin chem ( second times a charm) First dose is Tuesday using Gemzar/Carboplatin . She feels that a continuing regiment of antibiotic ( Amox/Clav twice day) should be taken during the chemo treatments.He feels so much better this week eating again and feels well enough to get out. Can't really understand this e-coli infection. Just though everyone was so nice when I first wrote and wanted to keep all up to date. Wish us luck on Tuesday and if anyone as any added advice would be grateful for it. Thanks Debbie

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13 years 8 months ago #1539 by rentanag

You sound so much more in control tonight, I could tell from your post of yesterday you were frightened.  I interpreted it as being frightened overall, but am so glad to hear of your genuine trust in the doctors you are using and that it was the urologist in the ER that had you both feeling so out of control.
I also have an appreciation for the prayer said by your oncologist when she heard about the reaction and also about the hug she gave him when she came to the ICU.  I know they had to be good for you to see and hear about after all that had just happened with your husband.
I look forward to an update after your husbands appointment next week with his urologist, and I know many others on this site will be looking for it as well.
Have a few days of relaxation, you both deserve it.


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13 years 8 months ago #1538 by DebTN
Thanks to all for the replies. We went to the ER today and had the ultrasound and the infection is responding to the cipro. This made me feel much better.
I am sorry but I said cisplatin in the first mail and it is carboplatin because of the kidney's. My mistake in typing and memory.
We meet with the urologist on Tues. our regular one. We have alot of faith in him. He came to East Tn from Texas and at the age of 38 has lots of experience with bladder cancer. We are in Greeneville TN but our doctors and hospital are in Johnson City. This urologist is our second opinion and highly regarded at the hospital. He has given us options but we will discuss the lymph nodes again in more detail.
Our Oncologist is also new to this area from Georgetown University and studies at Stanford. She has a very calming effect and when she came to the ICU after the reaction she hugged my husband and said when they called her she sat down and prayed for him and for guidance in caring for him. She ask about this site and encouraged me in bring in all the info I had questions on.
Maybe in my first post I sounded like we were doughting things that was true but only the stand in Urologist not our regulars. But all advice and experiences are for learning and I apppreciate and will indeed use and review all those given.
Will update as things go along thanks for the prayers and advice all is welcome. Debbie

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13 years 8 months ago #1532 by rentanag

A second opinion from a urologist is another route you could take, as in my case again the two urologists agreed that taking the lymph nodes laproscopically and doing frozen sections was a good way to go.  If they are involved and one wants to do chemo first then you can stop the procedure and do your chemo soon after, because recovery from laproscopic surgery is much easier than an open procedure to remove lymph nodes.
I went with the gut feeling I had concerning the oncologist, and told my urologist I wanted surgery first.  He told me that he didn't necessarily agree with the oncologist and was fine with doing the surgery in this manner (this is something we talked about long before having the pathology report from the TURBT, so he wasn't just saying this because it was all of a sudden what I wanted to do).  As I mentioned in my previous post to you I went with my gut feeling, and also my feeling secure with the urologist who would be doing the procedure.  I had FAITH in him, he's a man of faith (muslum) and believes in prayer.  This all came about from some very simple words he had said to me early on in the process of diagnosis and staging, I knew he was the right person for the job!
I wish for you and your husband to find someone you can have that same faith in, as you can also read about others on this site who also have faith in their surgeons or oncologists whichever way they chose to go with treatment.  That comes from being a well informed patient or family member of a patient, which then helps you to make the right decision medically as well as having that feeling of faith in your doctors and caregivers.
We're hoping things will be getting better soon for the two of you, and you're in our prayers.


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13 years 8 months ago #1531 by survivor
I am very sorry to hear about the complications that your husband is going through. I would definitely stress on getting a second opinion , for the diagnosis and especially for the chemo. If the doctors decided to go ahead with Taxol/Carbo combo because of kidney function being low, then I just dont understand how they can go ahead with Gemzar/Cisplatin . Cisplatin is toxic to the kidneys and carboplatin is not. I was switched from Cisplatin to Carboplatin since my kidney function deteriorated after 2 cycles of chemo. Please ask them these questions before proceeding with the chemo and please find another oncologist and take a second opinion.
Good luck.

Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012

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13 years 8 months ago #1530 by mikmckna

I too am sorry to hear about the issues you have had so far. It saddens me when I hear a story where Doctors have caused more stress than the diagnosis. Like Lou, I strongly recommend seeking another opinion from an outside source. I have said it many times... seen the results here and in my family. Having COMPLETE trust in your Doctor makes a huge difference. Based on your story it really does sound like your doctors were thrown a curve ball or two. Like Lou, I think a major med center might have answers your local team may not simply due to experience.

Please do not get me wrong, I am not about to knock the use of a local team vs. a major med center. I chose my local Uro over John Hopkins. I should say that my Uro did complete his fellowship at Mayo so he certainly was qualified but just as important... he made me feel comfortable. He took the time.

I say make some calls and by all means... let us know where you live. I'm sure there will be sugestions on places to look into!

Believe in yourself,
T1-G3, CIS
RC w/ Neobladder 8/22/06

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