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Hi
I’m wondering what kind of immunotherapy drug you had and whether you had side effects. I had Neo bladder surgery a month ago – 3b as well. There was cancer in 2 of 14 lymph nodes they removed, but said surgery showed clear margins. My oncologist is very pessimistic and said I have a high chance of cancer coming back. He said he can offer immunotherapy but it has possible bad side effects – like auto immune diseases (which are very common in my family) and only 30% success rate. I can’t decide if the immunotherapy is worth it? Any advice? Thank you
kim
61 year old female.
Thanks Tana. If I do get a chance to go to Burnaby I’ll contact you.
Can I ask how old you are and if you were ever a smoker? I’m 60 and have never smoked. I also don’t drink alcohol. Nor did I work with chemicals. I’m also in pretty good shape and eat healthy. No idea how I got bladder cancer.Hi Tanya
I just now saw all of your replies. Thank you for the info. I did sign up with Inspire Health. I waited about three months for an online consult with a dr from there. They cancelled the appt because the dr had a family emergency. They said they call me to reschedule but never did.
Anyways, I did 6 BCG and my last scope was clear. I go again for a scope in February. I’m feeling good, so hope all is clear. I would love to meet up some time. I rarely go to Burnaby but maybe we could meet half way in Maple Ridge. If that would work for you, please text me at 604-832-3323. Thanks. Kim.It’s Kim again.
I was also wondering what kind of bladder relaxant you take? Over a year ago, before I knew I had cancer, my doctor just kept telling me I had an overactive bladder. She sent me home with a prescription. However, when I looked up the side effects it looks horrendous, so I never filled the prescription. It was expensive too, and it said you would get dependent on it and if you stopped taking it your symptoms would be worse.
Thank you for all your sharing of information.
I hope your bladder inflammation settles soon. Do you find there are certain foods you need to avoid?Hi Dave and Mary Sue
Thank you for all the information. It is helpful. I drink only water or decaffeinated tea and one decaffeinated coffee (my treat) in a day. I cut out caffeine with my first scope and didn’t add it back in. I try to limit water later in day, and I’m really active – hiking, biking, etc. I don’t think I have a UTI, but then I never had them before either, that I knew about anyways. My only real symptom was having to pee a lot.
Mary Sue – that is interesting about the different types of BCG. I don’t even know what type I got but it seems like my bladder feels a bit inflamed, off and on, always. I get another scope on Oct 26th, so will know what’s going on then. I hate not knowing. Mentally, I’m trying to stay positive and I’m staying very busy. I’ve got lots of family and friends, husband and kids, and two grandsons, so I’m lucky. Still, I have moments when I can’t stop crying. I can’t believe I got bladder cancer when I’ve always done everything healthy (because my mom died of colon and liver cancer at 50). Anyways, any suggestions for how to handle the mental part of this? I feel sorry for my husband because he’s usually the one here when I have a breakdown.Kim
Hi David
Thank you so much for your reply. At least it tells me that frequent urination doesn’t mean the cancer is back. I hope that your situation gets better and I’m glad you are cancer free now. I hope it stays that way.
Kim.Thank you for the information. You’ve been so helpful.
I do make sure the stevia is only stevia.
The thing that worries me is that I have been having cravings for sweets lately I’ve tried to satisfy it by making healthier cookies, sweetened with dates, and containing gluten free, organic oats, etc. I thought it was stress, and it’s made me gain a few pounds, which I don’t like. I hope the cancer isn’t back, or not all gone. The urologist did say I could get a second TURBT to make sure, but he didn’t think I needed to. He recommended BCG and then another scope at the end of Oct, so I chose that. I really didn’t want to have another surgery right away.
I hope you are okay too. It would be so nice to be able to meet you and have all to you. I don’t suppose you live anywhere near me, though. I’m in Mission, BC.
Hugs to you too, Kim.Thank you everyone for your replies. It helps to hear positive stories. Mary sue, you are the first person I’ve connected with that also had high grade bc, so your story is especially up lifting. The high grade diagnosis has me very worried. Like you, I wonder why I got bladder cancer. I’ve never smoked in my life and I’m a bit of an exercise and health nut. My only explanation is genetics. My mom died of colon and liver cancer at 50. I’ve always tried to avoid things that cause colon cancer, but never even considered I’d get bladder cancer. Thank you so much for the info about the greens drink etc. I eat lots of veges but not too many cruciferous veges as they give me gas. (I’ve always had a bit of IBS, so have to watch what I eat anyways). Maybe a greens drink would be the way to go.
How old were you when diagnosed? Do you or did you drink coffee? I drank about 3 cups a day but have now switched to 1-2 cups of decaf and/or chicory coffee. I put unsweetened nut milk and stevia in my coffee. I wonder about the stevia, but it’s only a small bit and supposed to be okay. ??
Any advice is welcome.
Thanks again, Kim.
