Here we go again!

PET CT scan report confirms earlier CT scan findings - Disease has now spread to my lymphatic system and has shown up in several lymph nodes mainly in the abdomen, close to the original sources - the right kidney and bladder. So yet more treatment required to continue the nightmare of the last 2 years.

Surgery is not an option so its to be some form of chemotherapy. There is a trial of a new drug combination that I may be eligible for  - Enfortumab Vedotin given with an existing cancer drug Pembrolizumab. This sounds promising, otherwise it would probably be more of the Gemcitabine and Carboplatin, that I had previously.

The latter made me progressively unwell, and had to be stopped after 3 of the 4 cycles, as I had to be hospitalised fro 2 weeks with sepsis, as the toxicity attacked my bone marrow. So I can't say I fancy riding that bike again. But apparently they may be able to give some other medication to mitigate the serous side effect.

Can't say I'm feeling very optimistic about the likely outcome, it just seems that the bl**dy thing is going to get me, it's just a question of when, and how much more I have to suffer before I reach what seems the inevitable end.

  • I’m so so sorry to hear it’s spread.I really hope you can get the trial drug.Best wishes Jane x

  • No wonder you're not feeling enthusiastic, but fingers crossed for the trial.

    It doesn't matter where you go, there you are
  • Can sympathise after 6 years bladder cancer free Mr W has had a small patch removed from this ureter Surgery not an option and consultant doesn't think chemo will work So he has started a 6 week course on mitomycin into his bladder which he says has a slim chance of preventing or slowing a recurrence 

    Hope you are eligible for the trial and they can minimize side effects 

    Best wishes 

    Wilbert 

  • Unfortunately I'm not eligible for the new "wonder drug" trial. as they found cancer in my prostate after removal, the first anybody knew about it. Although ironically, I'd been querying this as a possible problem with my GP, for quite a while, prior to first kidney cancer diagnosis! But the usual PSA tests didn't flag up any problem!

    So it will be some conventional chemo, using an appropriate combination of drugs - GemCarbo as before, or maybe GemCis if my remaining kidney function is Ok. There is a possibility, dependent on the tests on tumour tissue removed previously, that Immunotherapy may also be an additional option.

    I have an appointment with the Oncologist Consultant on the 18th, so will know then what's next. At least I can do this next phase local to home, rather than having to travel into London, which is quite tiring anyway, without the extra fatigue that chemo will no doubt cause!

    I'm trying to remain positive, but must admit, it's wearing down my resistance! I had just got back into my golf and was starting to play really well. I won on Thursday with my best score for ages at 6 under par, and now it looks like that is likely going to be probably as good as it gets for the forseeable future.

    The really strange thing in all of this nightmare of nearly 2 years, is that I have never actually felt unwell, apart from when recovering from procedures, surgery or the negative effects of chemo! The supposed cure has actually been more unpleasant, than the periods living with the killer disease, either unknown or whilst awaiting the next tests and treatments!

    KidneyBeen

  • Very, very, sorry to hear this news. In my own case, the incidental prostrate cancer was only discovered after my RC. The trouble is that the PSA test is not a reliable test, which is why further exploration is necessary.  You can have very high PSA levels and be totally clear and visa versa.

    Really hope the chemo does the trick and at least you don't have to travel too far for treatment. Really rooting for you.

    It doesn't matter where you go, there you are
  • Hi Kidneybeen. Sorry to hear what you are going through. Just sending best wishes going forward.

    Best wishes to All,   rily.

    What is a Community Champion ?

  • Odd Mr W has not felt unwell at anytime other than  treatment Discovery of both problems were as a result of blood in urine He is a keen cyclist and had been enjoying getting out prior to this ureter problem The consultant has said he can go out now he has a srent in place which he has started to do 

    He has had 3 mitomycin into his bladder and has 3 to go before the consultant does at ureterscope 

    Good luck on 18th keep us posted 

    best wishes 

    Wilbert 

  • Saw the Consultant Oncologist as planned. It's to be a further course of chemo. Not sure what drug combination it will be, and whether they will also give an immunotherapy drug. It depends on the latest blood test, biopsy results and a Kidney function test. Only having the one kidney now may dictate what is appropriate. 

    KidneyBeen

  • Hi Kidney....it is a nightmare...I had just had bladder cancer and will still need more treatment hospital visits seem a way of life now...In  2017 I was diagnosed with lung cancer which had spread to my back, lymph nodes and liver...gave me 3 months to live...chemo 3 rounds nearly killed me....pembrolizamab the immunotherapy drug was a saviour for me and I had to fight to get on it...I am still stable 5 years on...terminal..but stable....if the chemo has made you ill ....perhaps ask if you can skip that and go straight to immunotherapy....I could tell it was working for me within the week......I was quite a difficult patient I guess but I am still alive.  Stay positive and good luck.

    lettuce
  • Hi all, latest sitrep :- I saw the consultant again this week. Kidney function test results not great, so chemo is not an option, as to toxic for my one remaining kidney to deal with.

    Immunotherapy is thus the only treatment available. However, biopsy results were not hugely favourable. Something about a protein on the cancer cells that shows them up more for the bodies immune system to identify and attack them. So the treatment may not be particularly beneficial, and like chemo, there can be unpleasant side effects.

    So the outlook is unfortunately very bleak. I will see how it goes, but if it severely impacts my quality of life, may just stop and try and enjoy what's left of my life while I can. I had just got back to full fitness, and was starting to play really well, so I don't want to lose that again, as it's such a significant part of what I do!

    KidneyBeen