What are the conditions where you receive bladder chemo installation?

Hi, I just finished my 6 weeks. I will know results on 7/11 when I get the Cystoscopy. I had to the in a room just like you described, but I only held the gem dose for 1 hour and I didn't have to move. It was uncomfortable with the catheter so I could only imagine how bad it would have been if I had to move around. With the 2nd treatment I went home and held it for 1 hour. But, you are right, they should have a bed where you can move around. That was dangerous what you were put through.
By the way, after the 2nd treatment I get alot of burning and irritation. I hope it goes away soon. That was the only side effect. Good luck to both of us and hope the treatment worked. God bless you.

I hope you have great results on your next cystoscope!
I’ve had 15 gem/doc treatments. They were administered by a nurse & I didn’t see the doctor on these appointments. After the gemcitabine was instilled then I went back out to waiting room and waited for 90 minutes and then went back and they drained the medicine & I received the 2nd instillation & catheter was removed. I was able to leave facility and we drove 4 hours home. After 90 minutes we would stop so I could release this medication. I would sleep in the backseat while my husband drove. Not easy but I was very grateful for being accepted by this facility. My hometown hospital doesn’t have a urologist oncologist so I’m grateful to be at a facility that does!

Hi Deb, thanks for that information. So, I have gotten 6 treatments of Gemcitabine/Doce. And, you have had 15, are the other 9 maintenance? I am hoping that in July, I will go on the maintenance program. You sound so grateful for everything and I admire that. I have it so much easier, traveling wise, but I get this burning and irritation that is driving me crazy. I am trying to see a gynecologist to see if I get answers because Urologist don't do UTI's or infections like I get. Take care and God Bless you.

Hi Honey, yes I had 9 maintenance treatments. The treatments are hard on your body and I did have a lot of burning and irritation although I never had a UTI. They would do a urinalysis before each treatment. The chemo can be very harsh on your body. I was very fatigued. I’ve been off the treatments for 5 months and I’m beginning to feel better now. I developed pelvic prolapse and it seems to be healing now that I’m not on treatments. I also found that special soap and gels for women helped to ease the burning & dryness. It helped soothe the pain. I hope you can see your gynecologist soon and can help you with your situation. I’m praying for you!

Thank you Deb, I haven't found anyone with the burning like I get. Your advice is so reassuring that there is hope. I already use Terconazole cream as needed and phenazopyridine pills (similar to AZO) and Tylenol but I only get a little relief. That's why I have to see a gynecologist. Iam afraid to buy over the counter meds for pain and burning. Could you suggest some names? I hope you continue to do well. 5 months without treatment is awesome. Blessings for your continued well being.

@bethcamp That sounds like an unsafe and uncomfortable situation. My husband had BCG at a local cancer hospital and they had 2-3 rooms with a hospital bed in their infusion area where a nurse would instill his BCG and then he could go home to do the turning rotations. You may have to request a different facility for your maintenance treatments if they cannot accommodate your needs.

Hi Honey, I use Kindra V Relief Serum, Honey Pot sensitive wipes & Good Clean Love feminine wash. It seems to help. The longer I’m off the chemo the irritation & burning is better. After my treatments I couldn’t stand anything touching my skin. Felt like my bottom was on fire. I hope you feel better soon. Because of our anatomy women seem to deal with bladder cancer much differently! Praying for you!

Thank you, I saw the Dr . Couldn't find anything. Gave me Macrobid for 7 days. When results of Urine Culture come back with bacteria then I may get something else. In the meantime the antibiotic doesn't seem to help much. So, I do think I have a UTI that may need a different kind of antibiotic. I am still having the burning symptoms. Take care will let you know how it goes.

I think it is a good idea to test for a UTI if you have symptoms. I have the home tests and if it is positive, then I follow through with a lab. From my experience, there is burning for a few days after the treatment.

Also, in terms of burning after the treatments, I purchased Water Wipes - baby wipes with only water- for use in place of t.p. when my bladder is clearing out the chemo. It really helped me not to get irritated.

Being on this forum helps. When I think I am doing poorly, I find out here that I am not alone and am probably doing alright, considering.

I did find out that dizziness, on some instruction lists, is considered a dangerous side effect. I had it for a week after the 4th treatment, and although I texted through the doctor's app about it, I got no meaningful response. I will finally have a chance to see the doctor this week and will discuss what he does and doesn't want to hear about in terms of side effects.

This is a long update. I had the six GEMDOCE treatments (on the exam table...) and I was so relieved to be done. The side effects of tiredness and some shakiness seem to subside slowly.

The process is then to have another cystoscopy to see how things went with the GEMDOCE installations. I am all clear! The oncologist announced that the treatment is working.

That's nice to hear, but then he explained that I will now have monthly installments for a year, once a month. Actually, the sixth month is "just" a cystoscopy.

What annoys me is that my energy is ridiculously low, even though the last of the six weekly treatments ended in late May. I've done some reading and see that tiredness can continue for months. Now, with monthly treatments ahead of me for a year, I am changing the way that I see my year in terms of other activities. I am disappointed about the treatments and their side-effects, but very happy that the treatment has not allowed any new growth.

One bit of really good news regarding the pain of the catheter during treatment - exaggerated by doing the "rotisserie" to wrangle my body from side to side on top of an exam table - without aid from the nurse (end of whine) - I asked my oncologist if turning was necessary. It was the nurse who suggested it (and I had read about it so was open to the idea). He said there is no solid evidence that it helps. Well, I am OK with evidence from those who experienced it, HOWEVER, I found an article (no I didn't save the medical site) about why/when to rotate.

The article stated that it is done to make certain that enough chemo is in contact with the sides and dome of the bladder, for cancers which are found in either of those locations. Mine was all in the neck of the bladder, and my doctor says it is getting plenty of contact without turning. He also said that when the chemo is "sprayed" into the bladder, it gets good coverage.

My nurse finally ordered a smaller size of catheter (probably for kids), because I need that. She used one size smaller than normal and it helped with the pain, but she got an even smaller one to try going forward.

I cannot say I am looking forward to another year of treatments, but perhaps without having to move around, and having a thinner catheter, I will be better able to tolerate the 90 minutes of gemcitibine. They remove the catheter after taking out the gemcitibine and putting in the docetaxel. At that point, I am released to finish up at home.

I have found that after releasing the chemotherapy, "WaterWipes" are a great help in keeping my skin clear of the chemicals that can otherwise irritate it. I am sensitive to almost everything that can come into contact with the skin, but water wipes are fine.

So for now, I am delighted that the treatment is working, that I will not have to rotate, and that the catheter might be more comfortable in a smaller size. Here is hoping that I can find a way to recoup some energy. Changing my diet is next - to clean it up and remove the comfort food that crept in during all of this.