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Another Update. Re-TURB cancelled!!!

10 years 4 months ago #24643 by Gracie
Hello Sonya,

I would agree with Pat that bladder sparing is not an option at this point.

I had adjuvant chemo (meaning after the surgery) of Gemzar/Carboplatin. Carboplatin is in the same family as Cisplatin but is better with the kidneys. Since I have had issues with kidneys in the past they chose to go with the Carboplatin. I also had it over a 3 month period - 3 weeks on/1 week off.

My oncologist (also @ UCSF) told me that everyone metabolizes the chemo differently. I also had the chemo (3 mos) after the surgery so I was still recovering from that.

The worse part for me was the absolute fatigue. I would prepare for that. I also encourage you to ask questions about the drugs they give you to offset nausea and the like. Some have steroids and I did not react well to those. I took very little of the drugs and found it to be better for me. Each person is different.

I personally could not work. No way. Give yourself the time you need. Take it one step at a time and be kind to yourself. Just to prepare, you may want to see if your company also has LTD (Long Term Disability). It may help you financially since it supplements SDI. Its one less worry and something you may not want to deal with later.

Dr. Konety is an excellent doctor and also a very caring person. You are in good hands - there is no doubt of that.

Gracie

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10 years 4 months ago #24642 by Patricia
Sonja....they have some pretty sophisticated equipment at UCSF pathology and i would tend to think Dr. Konety is trying to nip this aggressive activity in the bud........
http://www.ncbi.nlm.nih.gov/pubmed/7539869
As far as the chemo goes there are others who can help you a bit more with that and its a variable you know. The important thing is that you know exactly what you are getting and when and question everything. Know the protocal backwards and forwards. Hopefully you have a center near you that can follow Dr. Konety's protocol.
I can only tell you about my sons experience with testicular cancer..He went to the top docs at Indiana that came up with the cure for this cancer but he was able to do his chemo here at home but his doctor made sure he knew everything he was getting and was told to question every nurse that came in as to what he was being given and of course, if there were any problems he would go back to Indiana. He always had someone with him during infusions and to bring him home. There was one time that a nurse came in with a bag and he asked her what it was and she told him and he said..."NO.that is not what i get"..She was insistent...as was he...finally she went out to check and realized she had gone into the wrong room. Nurses get tired..mistakes can happen....they shouldn't but they do.....so remain a strong advocate for yourself.
Pat

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10 years 4 months ago #24634 by Sonya1
Thanks Pat. Is angiogenesis a rule out for bladder sparing? I thought it was CIS. Would the chemo kill what is in the lymph nodes? Nothing showed up on the PET CT outside the bladder so what's in the nodes is microscopic at this point. I also have 1 cm of cancer left in the bladder. Dr Konety felt the chemo would kill that. Do you have a sense of how sick this chemo will make me? I'll have a better idea tomorrow what the drugs are when I talk to the onc.

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10 years 4 months ago #24631 by Patricia
Sonja.....i would personally lean toward the pathology department of UCSF and their findings. Since they have found tumor angiogenesis thats a pretty good accessment that lymph nodes are involved and you need to start chemo as soon as possible. I would be interested in the 2 other drugs he is including with the Gemzar/Cisplatin.
The bladder sparing protocol is not an option at this point.
Pat

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10 years 4 months ago #24623 by Sonya1
Well, I got up early to make my way to San Francisco (3 hour drive) for my pre-op labs today and Dr. Konety called me before I left. He was reviewing my path slides and saw lymphatic involvement (angiogenisis) and decided to cancel the re-TURB and order 3 rounds of chemo instead. Then, re-biopsy and discuss further treatment, possible RC in late June. I have an appointment tomorrow for the first time with an oncologist and Dr. Konety will try to reach him before the appointment and tell him his thoughts. This is more in line with my original local uro's ideas as he made the appointment with the onc. The only thing they disagree on is Konety did not see CIS on the path slide and does not recommend radiation. My uro did see CIS and wanted to do a combo radiation/chemo protocol.

What do you do when your 2 docs disagree? I am leaning towards chemo only, due to side effects of radiation at this time, but still not 100% sure of what to do. I don't want to miss any potential benefit of radiation. It is a three month long protocol and Dr. Konety recommends 4 drugs including Gemcitabine and Cisplatin, not sure what the other two are. I will have to take three months off of work. Any one have any thoughts on this? I think after this I will post in the muscle invasive forum because I don't feel so newly diagnosed right now. :( Thank you!

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