Inoperable stage 4 now Gemcis

Thank you Rily! I will tell her :) 

Hi Puglover, no experience of chemo but sending your mum best wishes. Love also to you, it’s very hard to see your mum poorly, so I know you will be carrying a lot. xxx

Thank you Hero x

Hi Puglover

Just to add a bit more info on GemCarbo - my mum had the same issue - one kidney, not great function so no chance of using Cisplatin. Basically its a similar treatment, platinum based but not as vicious on the kidneys (lower nephrotoxicity if we're talking technically!). So far we're awaiting a scan to see whether it's done a good job - she completed 5 cycles of 6 before they had to pull the treatment due to side effects.

Hi Chris 

Thank you - I really hope your mum is doing well and you see shrinkage (or complete disappearance!!) on the scan. Let us know x 

PL

My mum was diagnosed with advanced Stage 4 bladder cancer in 2017. In December of that year she started the chemotherapy Gemcitabine and Cisplatin (GemCis) in the hope that this would shrink the tumour in order to have a radical cystectomy (Bladder removal). This was our families first experience with chemo so we was all very scared about the side effects and if my mum, who was 70 at the time, would be able to cope with it as the oncologist warned us that this chemo is strong and can be very tough to deal with.

My mum began her treatment just a few days before Christmas and was pleasantly surprised at the fact she didn't feel any effect of the chemo at all really. We was able to have a good christmas, without any bad effects of chemo. The anti sickness drugs, that are administered at the same time when you get the chemo, are very good, so good that it basically takes away sickness all together.

Fast forward around 2 or 3 weeks into new year and my mum was admitted into hospital with pain, which turned out to be kidney stones, nothing to do with the chemo.

A major worry though is that they noticed my mum had pretty much no white blood cells, which the chemo had caused, this meant that they gave my mum a room on her own to keep her safe from infections.

Scan results showed that the tumour had shrank significantly and so was able to jump straight to surgery without finishing the full cycle of chemo.

My mum's cancer was diagnosed very late and was an aggressive type, and after two clear scans, the cancer returned, my mum died peacefully in 2019.

For anyone who is about to take this chemo, the effects of it are tolerable and i'm sure many people can get very good results, the main worry is the white blood cells, but a healthy diet can help with this also.

My husband had same chemo 1 full day following week 3 hours then a week off. And on. However he had his bladder removed 4 months prior & he couldn't cope with chemo, he would have full day by the following week & a short day, he was too ill. He then had lowered dose to start 2nd cycle. The same thing happened.  Other people I know did not have the same reaction.  So it's individual.  So take lots of books/magazines.  My husband took a tablet you have WiFi. So she can catch up on her programmes. Take drinks & anything uou want to eat, but not too smelly. As other people may feel ill. Take a nice cushion. Be as comfortable as she can. Much love to you all. When I picked my husband up, he looked quite flushed. Also they can be very moody. Ignore, this can just be a symptom. Xxx

1. So sorry I've replied to this message not knowing how long ago it was posted.  So very sorry xxx

Hi Pugover

I was diagnsed with stage 4 in 2021 & was given Gem/Cis for 6 cycles. A cycle is the initial Gem/Cis on day 1, (tales all day) then day 7 just have Gem (about an hour), then a break for 2 weeks for the next cycle. Unfortunatly I never got to have a day 7 treatment as the day 1 knocked me out so much. The weekend following treatment I was in bed for 3 days & passing out if I got up too quick. This resulted in an Ambulance call out one Sunday. So on my day 7 visit, they woudln't do the Gem treatment becuase of the call out & I nearly fell off the scales in the chemo ward.

By the 3rd cycle I was getting in stride, (shaved my head) but noticing the Gem treatment was hurting my veins. This happens a lot as it can burn them & I had a number of unusable veins which were very painful. By cycle 5, I was writing in the chair when I got the Gem & when I had cycle 6, I was in pain even with the saline solution. This meant my chemo then stopped. My veins were a mess to the extent that when I went to hospital they took half a day to find a canulation site.

In January 2022 I then had a radical cyctectomy which cut out my bladder & prostate &  few other things I need. Before the op I was given an 80% chance, after the op I was given a 20% chance. In early 2022 I then went onto immunotherapy which caused some organ failure problems & was cancelled after 4 cycles so I could recover. After a month, I started immunotherepy again, but lasted 1 cycle due to constant diaharea.

I have now been offered end of life treatment of either radiotherepy or Gem/Carb. This was not presented to me as a cure, it was presented as a method to expend life. I refused that option.