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I am a 63 yr old female with rheumatoid arthritis and discoid lupus. On May 22 I had gross hematuria and I had my first meeting and cystoscope with urologist on July 2 at which time he informed me I had cancer. Aug 12 had my first turbt and epirubicin with pathology coming back as non-invasive papillary urothelial carcinoma, high grade. Repeated turbt on sept 6 and again Oct 31 to try to stage it? At this point urologist said he would see me in March for another cystoscope. I then attended the Navigating Bladder Cancer session in Saskatoon and heard that high grade is typically treated with BCG. I approached the urologist who was presenting and he agreed to accept me as his patient. Dec 19 I had another cystoscope and I have carpet-like recurrence and so another turbt scheduled for Jan 6 and then BCG. Needless to say I am very concerned about how quickly there is recurrence. The first cystoscope showed a “cauliflower” like tumour and now it’s a carpet-like, is that how they start? I would appreciate any input in regards this and also anyone else with RA that were taking Enbrel and methotrexate, unfortunately I can’t get into see my rheumatologist until February 24 to discuss medications, but from what urologist said, I need to stop before BCG. Thank you for any and all input..
Hi Bren
Sorry you have been diagnosed with high grade non invasive bladder cancer. I am NOT a doctor and I have no experience with Enbrel or Methotrexate.
I do have experience with BCG treatments and have been cancer free since 2007.
I did find the following link regarding interactions with Enbrel and BCG treatments. The doctors should be able to explain in detail any interactions between any medications you currently are taking and BCG treatments.
The “carpet like” tumors you are describing if red could be CIS, something you should ask your Urologist.
BCG is the current standard and most effective treatment for high grade non -muscle invasive bladder cancer and CIS.
I wish you much success with your upcoming turbt. Keep us posted on how you are doing.
All the best,
Jack
My urologist called with pathology results. The carpet like recurrence is non-invasive but high grade. I will start BCG treatment in a couple of weeks. Does anyone have any links that I could read up on what to expect, etc with BCG. does it burn when it’s put in the bladder, side effects, etc. Once again, thanks in advance.
Hi Bren:
I hope that you or your uro put in a call to your rheumatologist’s office to get the low down about stopping your RA med’s before commencing BCG. Communication between specialists really varies and unfortunately it is up to we patients to advocate for ourselves and make sure that everything is in order.
I did do BCG treatments – 21 over a 3 year time span. I did my first set of 6 (once a week for 6 weeks) in the fall of 2008 following my first TURBT. That was it except for cysto checks every 3 months. I was clear until July 2010 an just short of the magic 2 year mark where I could have moved up to 6 month checks. A single tumour was found at that check so I had a second TURBT to remove it and that was followed by a second set of 6 treatments followed by 3 sets of 3 (once a week for 3 weeks) at 3,6 and 12 months after the first set of 6. These are sometimes called maintenance treatments. In theory they are supposed to boost the effectiveness of the set of 6.
As for side effects; it varies widely from person to person and unfortunately since we do not have a crystal ball, you won’t know how it will go for you until you do it. Whether your RA and/or lupus will play into that I don’t know. That would be a conversation to have with the uro and your rheumatologist. That being said the most common side effects are:
1) Fatigue – you may feel very tired and lathargic during the treatment period and need extra rest. Just be prepared to slow down for a bit. Your energy will return after treatments are finished but it may take time. It took longer for me when I was going through the second round I think because my body was already sensitized to the BCG.
2) Low grade fever – Since the BCG is an attenuated TB bacteria your body recognizes it as a foreign invader and sets off a reaction to combat it. This is the immune response setting in. However, if you spike a very high fever, get help ASAP because it could mean that you have developed a systemic BCG infection which will need to be treated in hospital.
3) Muscle and Joint Pain and body chills – Some people experience these to varying degrees. Most describe it as feeling like they have the flu. Tylenol and Advil help with this. I would ask about personal appropriate pain management meds for you since you have an additional condition of RA.
4) Irritated/Inflamed bladder – some people experience bladder inflammation from the BCG and will pass a small amount of blood post treatment. If the bleeding does not resolve in 24-48 hours and/or gets worse contact your uro or clinic before the next treatment. If your bladder does become too inflamed they may recommend delaying, altering the BCG dosage or another drug to treat your bladder cancer.
Other more unusual side effects:
a) drugged feeling – some call it chemo brain, difficulty concentrating remembering etc. I experienced this and it went away once treatments were finished.
b) digestive disturbances
c) UTIs – can happen because of intrusion into the bladder with the catheter. If you suspect anything call the clinic or your doc and get checked before the next BCG. If you have a UTI, you will need to treat it first with an antibiotic before resuming BCG treatments. The odd postponement of a treatment or two does not have an effect on the outcome. Antibiotics kill the BCG rendering it useless so you don’t want to have a treatment for nothing.
d) yeast infections; I had an issue with this as I’m prone to them anyhow. I called the nurse when I had one and she agreed that I should get the yeast infection treated first before resuming BCG and she postponed my BCG one week. If you suspect one, get checked first before having the next treatment. For women it is not unusual to have a yeast infection and bladder infection at the same time so you don’t want to spread it from one area to another. This is more a female thing than for the guys.
As for it burning inside you, I did experience a little bit of that but had to deal more with bladder spasms as my bladder hates catheter intrusions and really protests it. For that, I simply used a heating pad set on low and held in on my tummy while I lay down doing the treatments.
A tip re female issues;
I always tell women this because the majority of uros are guys and don’t think of it as it is an anatomy issue:
I found that the skin in my genital area got inflamed from voiding the BCG so I learned to take a cool cup of water and pour it over myself as I went. Sounds a bit kinky but it worked for me. That first void after treatment will hurt. Many of us describe it as peeing hot glass or razor blades. That’s where I found the cool water helped. It washed my skin as the BCG came out. I then would carefully wash the area with mild soap and water, pat dry and then apply some Lanacaine or diaper cream. This really helped heal and protect the skin. Some women have told me that Vaseline works too. Wash your hands thoroughly after each void. I also used non sterile medical gloves for this to avoid getting the BCG on my hands. I disposed of them in a Ziploc bag and would still wash my hands after removing the gloves.
As a last note – make sure that you know what to do and who to call if you do experience any medical issues while doing BCG treatments. The clinic where you will be going should be providing all that info on your first visit if not beforehand. Take care and don’t hesitate to contact me if you have any questions. Best of luck. ((((HUGS))))
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