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  • #16
    Originally posted by Sfedor408 View Post
    Sorry to hear about your situation. May I ask if everything has been rectified and what type of treatment you received? Do you still use a SP catheter, or did you need to make changes?
    I have used a 22fr 5cc all silicone SP for 27 years. Changed it every 2-3 weeks and still developed stage 2 adenocarcinoma. Stage 2 means it has invaded the bladder wall and only some of it could be surgically removed and biopsied. Unfortunately the tumor is blocking the flow from my left kidney into my bladder (my right kidney basically does not function). Between my Urologist and Oncologist the plan is to treat me with Immunotherapy which has only been approved for bladder cancer in April of 2017. Removing a cancerous tumor or my entire bladder is not an option at this point, chemotherapy doesn't work for this particular cancer and they don't want to radiate my entire pelvis area either. I have had several bladder scopes, surgical biopsy, Nuclear medicine bone scan, CT scan, PET scan, MRI, tons of blood-work, Xrays, Ultrasounds you name it.

    My second treatment is today the 21st of September, it's an IV infusion over an hour.

    April 17, FDA granted atezolizumab (Tecentriq?) an accelerated approval as a first-line treatment for patients with locally advanced or metastatic urothelial carcinoma who are not eligible to receive cisplatin-based chemotherapy. (Many patients with advanced forms of urothelial carcinoma are not candidates for cisplatin-based chemotherapy because they have health problems, including impaired kidney function, hearing loss, or heart failure.)

    I have switched to the Duette SP catheters but it's perhaps too little too late.
    ^^(A)^^

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    • #17
      Darty, just wondering why removal of your bladder is not an option? This is the most common procedure done for this type of bladder cancer. Your bladder removal could be combined with the creation of a urinary ostomy.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


      • #18
        Originally posted by SCI-Nurse View Post
        Darty, just wondering why removal of your bladder is not an option? This is the most common procedure done for this type of bladder cancer. Your bladder removal could be combined with the creation of a urinary ostomy.

        (KLD)
        I know about the bladder removal surgery and it was discussed. My Urologist said the success/survival rate in older quads is not good. My Oncologist doesn't want me to do it unless we can shrink the tumor first and make sure it didn't metastasize from somewhere else or to somewhere else in my body. I am getting my second treatment today and will get more answers from Oncology from my scan results but bladder removal/augmentation is not completely off the table yet.
        ^^(A)^^

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        • #19
          Darty, I hope you can resolve your bladder woes ASAP. I always enjoy your comments and input.

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          • #20
            Originally posted by smokey View Post
            Darty, I hope you can resolve your bladder woes ASAP. I always enjoy your comments and input.
            Thanks for your support I'm an old quad 37 years and dance to my own beat but this is serious and we are doing everything possible to move forward. I had my second Immunotherapy treatment yesterday and met with my Oncologist. He told me the plan for treatment is an infusion every 21 days for 6 to 8 treatments then a PET scan to see if it's working. Fingers crossed!

            Thanks again
            ^^(A)^^

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            • #21
              Darty, I hope this is successful for you. When I was working, we did the complete cystecomy (bladder removal) surgery on a number of our SCI Veterans who were older than you, with good outcomes. Of course it is important that the surgeon involved have done this surgery many times in the past.

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


              • #22
                Originally posted by SCI-Nurse View Post
                Darty, I hope this is successful for you. When I was working, we did the complete cystecomy (bladder removal) surgery on a number of our SCI Veterans who were older than you, with good outcomes. Of course it is important that the surgeon involved have done this surgery many times in the past.

                (KLD)
                Thanks KLD. I have a couple of lymph nodes they are concerned with. If we opt for the surgery I would go to Mayo Clinic or UCLA Medical Center.
                ^^(A)^^

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                • #23
                  Over the past several months. I have had a cystoscopy, urine cytology, bloodwork panel, urogram CT scan (with and without contrast) as well as a 10 day course of Bactrim. Fortunately, all of the tests were negative. I have also switched from latex to silicone catheters.

                  However, still experiencing significant clotting, as well as puss discharge and heavy bleeding around the stoma site.

                  Does anyone have any other suggestions for feedback I can discuss with my urologist? Is it possible I need to go to a higher FR catheter size? Are there other tests/x-rays that should be done? Really at a loss for what is going on, but it is very discomforting and causing a lot of autonomic dysreflexia.

                  Thanks
                  C3/C4. Complete

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                  • #24
                    Do you take anticoagulation medication for some reason?

                    Do you use a securement device on your catheter to prevent pistoning?

                    Have you considered trying the Duette catheter that some here have used? It may be that your bleeding is coming from "bladder hickies" from exposed eyes on the catheter.

                    Did your urologist see anything as a source of bleeding when he did the cystoscopy? Has bleeding from higher up in the urinary tract (ie, the kidney or ureter) been ruled out?

                    (KLD)
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                    Comment


                    • #25
                      Don?t take any medication and do use a leg strap to secure the catheter.
                      I?m inclined to believe that there is just some rubbing going on along the bladder wall. Hoping to try The Duette once they?re back in stock.
                      I believe the urogram also checked kidneys.
                      C3/C4. Complete

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                      • #26
                        A leg bag strap is not a sufficient catheter securement device. You need something that keeps the catheter from pistoning in and out of your stoma, like a Statlock Foley or similar device.

                        http://www.bardmedical.com/products/...zation-device/

                        https://www.healthproductsforyou.com...gaAsZGEALw_wcB

                        https://www.saveritemedical.com/prod...UaAqjAEALw_wcB

                        https://www.buymedical.com/product/a...waAqI3EALw_wcB

                        (KLD)
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                        • #27
                          Originally posted by darty View Post
                          Thanks for your support I'm an old quad 37 years and dance to my own beat but this is serious and we are doing everything possible to move forward. I had my second Immunotherapy treatment yesterday and met with my Oncologist. He told me the plan for treatment is an infusion every 21 days for 6 to 8 treatments then a PET scan to see if it's working. Fingers crossed!

                          Thanks again
                          So I have an update to my treatment. The Immunotherapy treatments weren't working so after 3 of them 21 days apart I had another pet/ct and a consult with my Oncologist. He went over the results of the pet and my 360 genetic blood test and has determined the tumor I have resembles colon cancer. It is still blocking the urine flow from my left kidney (the good one) so now I have double Nephrostomy tubes one draining each kidney to save their function. I'm wearing 3 leg bags and I look like a science project Lol. I had a port put in my chest to get 5FU chemotherapy 2 hours of IV chemo in the clinic then home with a chemo pump attached for 72 hours. In 12 days I will do it all again until 6 treatments (12 weeks) then I'm having surgery to remove my bladder. After bladder surgery I need to continue the chemo for 6 more treatments 12 weeks.

                          So far a dull burning in my hands, feet, scalp, face and mouth. Exhaustion and some weight loss are my only side effects. Also anything I eat or drink that is cold burns my throat which is really strange.
                          ^^(A)^^

                          Comment


                          • #28
                            You are on quite a regime of chemotherapy and having the VAP (venous access port) is a real vein saver. I had my VAP for 10 years. I was treated for non-Hodgkins lymphoma in 2005 and kept the VAP as sort of a good luck talisman (I'm not usually superstitious). But, one day, I went for a VAP flush (maintenance on the VAP) and the nurse couldn't access the port. It was removed under a local anesthetic.

                            Chemotherapy of any kind is a challenge to your body and your mind. Have you tried to find a colorectal cancer or general cancer support group in your community? There is a general cancer support group in my area and NL and I found it a valuable resource and sense of comfort.

                            Stay strong.
                            GJ
                            Attached Files

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                            • #29
                              Originally posted by darty View Post
                              So far a dull burning in my hands, feet, scalp, face and mouth. Exhaustion and some weight loss are my only side effects. Also anything I eat or drink that is cold burns my throat which is really strange.
                              Talk to your oncologist about peripheral neuropathy which can occur with this chemo agent. If you continue to have burning in your throat or mouth, you may be developing mucositis, which is also a common side effect of this drug. Your oncologist or nurse at the infusion center should be able to help evaluate you for this and suggest management.

                              Hang in there. I am sorry you are having to go through all of this, but hope that this regimen will give you a cure. I agree that a cancer support group may be a good choice for you. Your oncologist should be able to refer you to one in your area, and some do their meetings on-line if travel is a problem.

                              (KLD)
                              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                              Comment

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