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  • jack-r

    Member
    February 23, 2019 at 11:32 pm

    Kimpricefinnamore

    I have found it important that all of my treating doctors know all my conditions and treatments outside of their specialty, so that I can have the best care for ALL of my medical issues.

    BCG “boosts” your immune system, calling it into action to fight bladder cancer. Steroids are used for a range of conditions, including managing (my) arthritis. BCG is locally active, and I am not aware of a direct interaction with other conditions; steroid use has caused concern among my doctors.

    I have had doctors of different areas of practice concerned about how much steroids should be used given my multiple medical issues. Some docs have believed that BCG can reduce BCG effectiveness, others do not feel there is an issue. Some anesthesiologists and rheumatologists seem to believe that large doses of steroids are necessary.

    I can’t resolve conflicts such as steroid use, so I just make sure that all my doctors know what the others recommend. I let the doctors work it out. One of my doctors has agreed to be the contact with others to resolve medications. It helps a lot.

    Do keep ALL of your doctors informed of problems and concerns as they arise. The care team can’t help you until they know of a problem.

    Best
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Kimpricefinnamore

    Member
    February 23, 2019 at 6:28 pm

    I’m am in a Similar situation. I had my first BCG treatment for carcinoma in situ of the bladder this past Thursday. I also have a diagnosis of rheumatoid arthritis which I have had for several years now , as well as an auto immune disease within my liver. I am wondering what the prognosis is for bladder cancer patients Who also have have auto immune diseases while taking BCG.

  • Caregiver

    Member
    February 23, 2019 at 12:03 pm

    Thanks for the heads up

  • jack-r

    Member
    February 23, 2019 at 6:39 am

    Caregiver

    My arthritis flares for a day or two following each BCG instillation.

    Hopefully, all of your husband’s doctors and care team members are aware of each other and are interacting with each other to avoid any medication conflicts.

    Your husband may or may not flare from BCG – but do keep your doctor informed of ALL problem that do arise. Help is available deal with problems and avoid unnecessary difficulty during BCG treatment once difficulties are reported.

    Best
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Guest
    February 22, 2019 at 3:26 pm

    Amen. I am so glad to hear you are believers. Yes, going thru the healing process can be difficult at times but we know we are not alone. I will continue to keep you guys lifted up. God bless you. Sincerely, Michelle

  • Caregiver

    Member
    February 22, 2019 at 2:49 pm

    NotAlonewJesus: Thank you. Especially for your prayers. We are believers too and know that Jesus is our healer. It is sometimes hard to walk through the healing process. We live in NC. My husband is a veteran and is being treated at Salisbury. We believe we are getting excellent care there but because of the VA horror stories I do a lot of research too. I don’t always just take their word for it. If you would like to connect sometime let me know and i will give you my personal email.

  • Guest
    February 22, 2019 at 12:10 pm

    Hello Caregiver. I’m sorry to hear you both are going thru this. I can’t tell you about reactions on other health issues but I can tell you what I know about BCG. It really is TB that gets injected to your bladder because the cancer is contained in the bladder. The TB will stay in your bladder and not get to the rest of your body and then your body attacks the cancer. That is how it is supposed to work. If the cancer has moved to the muscle level you are no longer eligible for BCG.

    My husband was diagnosed with bladder cancer in early 2018. He had 7 tumors that were only in the inside lining of the bladder. Had surgery asap. Then waited a month for a cycstocopy scan and had one more so they said he was eligible for BCG. Once he started BCG he had 3 more surgeries to remove new tumors. 2nd surgery to remove 1 tumor, 3rd surgery to remove 4 tumors. Then after 4th cycles of BCG the last scan showed no tumors and the fluid tested showed no cancer cells. It looked like BCG might work for him. Then 3 months later he started having blood in urine again and pain. The next scan showed an area that looked like scar tissue that was bleeding and another flat but raised type of tumor. So back into surgery but this time the pathology found that the tumor/cancer had grown into the deep muscle level where the lymph nodes are. He has been referred to an local oncologist Dr. Keogh and renowned surgeon in Charlotte NC
    Dr Riggs for his bladder to be completely removed and create a diversion. The doctor didn’t tell us at the beginning that we would go down this path but I had studies up and learned that with my husband having so many tumors at one time there was a great percent that it would eventually get to this. The good news is all that is being done has an 80-90% chance of cure, yes cure. So you might ask why didn’t they do it from the beginning. Well if BCG works the he can have a very normal life. With the surgery life changes quite a bit. He has to decide between three options on how to handle his urine now. 1) an outside bag 2) inside bag or pouch 3) neobladder. All three have pros and cons and each person really has to weigh what is important to them. Our excellent urologist Dr. Bradley Steele when asked if he had my husbands condition which option would he take and he said 3. Then we talked to the surgeon and he said 1 was the easiest but he personally would pick 2. We are still praying and trying to decide what is best for my husband.

    I may have told you more than you really wanted to here but I have found learning more is always better and prepares you. But still take one day at a time. There are many people who do great on BCG and are even cured but still have to keep getting checked regularly. My husbands cancer is high grade meaning there is a high risk of reoccuring or aggressive cancer.

    We have found so much comfort in prayer and trusting in the Lord and family and friends who also pray and encourage us. It is so helpful to have loved ones support you. At first my husband was very very private and trying to deal with this alone and it was so difficult. Then we heard a sermon about not letting pride keep you from leaning on each other so he has told family members and I can see how it has eased his burden.

    Father in heaven, I know you love us and breaks your heart to see us going thru things. Please send your comforter to this caregiver and husband. Bring healing to him. Help them not to have fear but trust in you and reach out to you. You tell us to cast all our cares upon you for you care for us. Let them feel your care, give them hope. Give them wisdom how to partner with the doctors about his health and healing journey. If they don’t know you, I pray you would do a work in their heart as they read this. Let them ask you into their heart and life for salvation for eternity so that when it is time to die because we all die they will have eternal life with Jesus. I pray that they would find christian friends to stick close by them and help in amazing ways. I pray that they would start reading their bible every day and pray to you. I pray they would find a good church and get prayed over by the elders for healing. I lift them up and their day in Jesus name. Amen.

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