Not in a good place right now. Mix of emotions, anger, grief followed by numbness, trying to focus on caring and keeping the house running.
Some back story - my wife was diagnosed with bladder cancer nearly a year ago. She opted for chemotherapy (gemcitabine and cysplatin) and had a partial response. She was on 15 day cycle, but could never manage day 8 as she was too sick or they couldn't get the cannula in to deliver the drugs (this has been a recurring issue).
After that she was offered "salvage surgery" which would not only remove the bladder but a whole load of other things, and leave her with a stoma for life, even if it was the "gold standard". She was still in shock and couldn't face that future. The alternative that she opted for was radical radiotherapy, six weeks of driving to hospital every day as the world fell under the shadow of coronavirus. And pain and exhaustion towards the end, and for weeks afterwards.
She had her 50th birthday on VE day weekend, we couldn't do the holiday we had planned so we made up a big cream tea ourselves and tried to make the best of it.
In July she had a cystoscopy and initial prognosis was good - no signs of the cancer, just necrotic tissue But she never felt like she was getting back on track. One Saturday afternoon she was in agony with urine retention, ending up in A&E needing a catheter. It got removed, then there were continence issues with nights and nights of lost sleep, buying packs and packs of pads. And she has continued to lose weight.
Finally got GP to take notice after consultant asked for blood tests that showed poor kidney function and her haemoglobin levels were very low. Ended up in A&E again last Tuesday, where she has been until Thursday. She had to have blood transfusion and CT scans over the weekend which show the cancer escaped and spread to two lymph nodes. These have grown and were blocking the ureters. On Monday she still seemed quite bright, but they had to put tubes in her back to fit stents internally and nephrostomy bags, and she has been in a world of pain ever since. They were supposed to use local anaesthetic but she could feel everything. She said she was crying and screaming but they continued anyway.
Surgery to remove the lymph nodes is apparently not a viable option, too big, too complex and for little benefit.
Sorry for the long post, I think there is a lot that has been pent up for too long trying to be brave and supportive.
Thankfully the nephrostomy bags have been removed and we got her home Thursday night. She is exhausted and doesn't feel she has much fight left. And the family are devastated and heartbroken.
All they are offering now is chemotherapy or immunotherapy. The former is right out, she has had enough of being stabbed, prodded and poked. Does anyone have any experience or advice about how effective the immunotherapy can be in slowing progress at this late stage? And what side effects there might be?
Hi Kamiro and welcome , although sorry to hear what a tough time your wife has had, and of course it affects you as well. There are two main types of immunotherapy for bladder cancer. The most common is BCG treatment which is a vaccine instilled intravestically straight in to the bladder, but this would not have any effect on lymph nodes. The other is a much more recent treatment where drugs such as Keytruda are administered intravenously in to the blood stream. There is little experience of this here, but hopefully someone may be along who have had this. As regards needles, your wife may like to ask about a PICC line. This is a semi permanent canula which stays in the arm and does away with constant needles. I had one for several months and did not have a problem with it. Best wishes.
Hi Kamiro. Just to echo the above. Sorry to hear your news. Best wishes.
