Busy couple of weeks coming up

FormerMember
FormerMember
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hi folks 

today I saw the urologist. The oncologists at the trials unit at UCLH are concerned about my kidney function and reckon the stent in my ureter is blocked. With the amount of pain I’m in, it wouldn’t surprise me. So they referred me to urology. But that’s at the local hospital. 

Today I saw the consultant urologist at my local hospital in Maidstone and he agreed. But he’s not sure the kidney is working at all so his plan is a test involving an injection of a radioactive isotope which they then track through the kidneys. If the kidney is working, he’ll replace the stent. That’s a day case procedure but involves a general anaesthetic. 

All that needs to take place before October 16 when I am due to start an immunotherapy trial. I also have to fit in a CT scan, a fancy blood test that requires a team from Cancer Research labs to come out with special kit and a biopsy. 

So it looks like I’ll either be waiting for hospital appointments or in hospital for much of the next fortnight. 

Bother. 

  • FormerMember
    FormerMember

    i hope you have very short waiting times and it all goes as smoothly and as well as possible.  Particularly hope your pain is sorted out for you xx

  • Hi Daloni

    It never rains.....

    The upside, if there is one, is that you won't be hanging around in pain, seemingly waiting forever for an appointment. There's a finite period of time, only about 2 weeks.

    Whatever happens I hope you can be relieved from pain, when we're not in pain the sun shines brighter and the strong wind is merely a fresh breeze. 

    Bring it on Slight smile

    Tvman xx

    Love life and family.
  • Hi Daloni,

    Good luck. By the way did you read about there probably is a poorer outcome of immunotherapy with use of antibiotics up to 30 days prior to starting it: e.g. https://newatlas.com/medical/success-of-cancer-immunotherapy-reduced-by-antibiotics/ 

    https://www.ncbi.nlm.nih.gov/pubmed/?term=29097494

    If they are going to give you antibiotics while fixing your plumbing perhaps ask if it makes sense to modify start date of clinical trial accordingly. Not that I know anything about anything, but I am a statistic of one at least where it holds true as I have had an extra 3 years due to Pembro and I did not have antibiotics for at least a year before I started. I think I had some when I had the Hysterectomy. I am having more problems with side effects from cancer treatments than the cancer itself. I do have some ascites now, but still not enough to change course. I have also changed to double dosage every 6 weeks rather than single every 3 as I am getting allergic to medical personnel and treatment centers.

    I cannot believe your survival skills and all your other skills. I am quite humbled! I hope your trial will give you lots of extra time with few side effects.

  • FormerMember
    FormerMember in reply to jamit

    Oh my goodness what a lot of things lined up, it sounds a bit daunting.

    but (positives!), the 2 weeks are going to fly by and you won’t have time to fret.  Lots of hospital jelly.  I was in last week and there was RICE PUDDING. The special blood tests sound super exciting (I bet it will look like the normal ones......”just a sharp scratch”)......and the weather is taking a turn, so hospitals are a warm place to be!

    seriously though I hope it all goes well and most importantly they get a biopsy so you can go on your trial.  I had seen the antibiotic thing in the paper too, in relation to immunotherapy....but immunotherapy feels a bit like pot luck anyway.....I think even the experts seem a bit baffled by it sometimes.

    hope these 2 weeks go well, love heather xxxx

  • FormerMember
    FormerMember

    I am reading this and hope everything works out for you daloni

    thinking of you while you have all these procedures and tests 

    positive thoughts to you and your girls 

    xxxxxx

    janet 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi!

    Thanks for the pep talk. I must admit I was (am) freaked out by the whole thing. I have jumped every time the phone has rung today. No dates so far. 

    It feels like there’s a lot of balls in the air as I deal with urology at one hospital, oncology and trials at another and my GP and the hospice for pain. I am seeing my GP again tomorrow to review how I am getting on with the opioid patches  - the answer is not too bad while I sit still. Walk more than 100m and I’m doubled up in pain. 

    But, as you’ve pointed out, it’s only a couple of weeks and hopefully not too much hanging about. I feel like everyone is on my side and I’m not having to battle anymore. I’m so glad to have the backing of the trials unit docs. It’s them who’ve picked up the deteriorating kidney situation via the regular blood tests that were part of the old trial I was on and now as I go into another trial. Without that monitoring I’d have just had to wait for a crisis. Maybe we can get on top of this before we reach a crisis. 

    The antibiotic and immunotherapy stuff is intriguing. I’m not sure I quite understand the mechanism by which this might work. Is it cause or affect? 

    Onwards and flatwards  

    Xx

  • FormerMember
    FormerMember in reply to jamit

    Hi

    Long time no hear! We met in the womb group, didn’t we? Hurray for pembro! It seems a miracle drug when it works. My oncologist has looked at whether I’m a candidate for it but I’m MSI low so it’s not likely to work so well for me. But I am so glad it’s delivered for you. 

    I know exactly what you mean about the side effects causing more trouble than the cancer. I think that’s true for a lot of us. I think your six weekly plan sounds excellent. It must give you a really good gap between appointments. I have had, I think, three full weeks this year without an appointment of one sort or another. A week off isn’t too much to ask, is it? Apparently yes. 

    I’ve not been troubled by ascites. It’s one of those scary things that looks inevitable some way down the line. I hope it’s not causing you too much pain or discomfort. 

    Take care, my lovely. It’s good to hear from you again

    xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Update! I’ve just opened an email from my oncologist to say the radiologist has reviewed my scan and said the chance of getting a good biopsy from my liver tumours is low and the trial team has agreed to allow me on the trial without a biopsy. Glory hallelujah! That’s one thing off the list. 

  • I hope it all goes as well as possible and that you can relax over the next couple of weeks.

    Xx

    Flowerlady x
  • Fabulous you got into the trial!! I will keep my fingers crossed for the results to be fabulous as well. Yes we met in the womb group. I had almost the same diagnosis as you when starting out in 2015, stage3CII UPSC or just serous, depending on the doctor. I had liver mets before finishing chemo and got Pembro from Merck on a compassionate deal as it was not approved yet, but I happened to be MSI-H, but also had 14 other cancer related genomic alterations and apparently immunotherapy works better the more you have.

    With respect to antibiotics and immunotherapy it seems they find that the gut bacteria are a lot more important than we thought here as well as with other diseases. Case in point I take Anastrozole (I am about to turn into a prune) as one of my original tumors was hormone driven and I have to take a particular probiotic with only 2 strains to keep UTIs and BV infections at bay. I have taken this for a very long as I have MS as well and have not emptied my bladder completely for 30 years. That stuff works. I am not surprised that antibiotics can be problem with immunotherapy as it causes problems all over the place, but of course one can die of infections so obviously we want it when we need it, but it is probably good to be mindful of it. I use other probiotics as well now for bowel regulation which also got screwed up some after all the pelvic radiation and Pembro fried my thyroid which regulates metabolism so without probiotics I would have a lot more problems. Yes, people often forget that chronic cancer does not mean back to where one was before diagnosed, but simply means alive with a ton of unpleasant side effects and more to come undoubtably. Good luck. Cannot imagine what you must be going through. One thing is getting a few drugs anther thing is all the hospital visits/stay, clinic appointments, scans, blood draws, and the waiting, but winter is arriving so when we have a beautiful spring coming your will have less cancer!