Coming up on 2nd session of Immunotherapy

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So following my nephrectomy (clear cell renal cancer),  and the follow up with the oncologist, I was told I'm in the intermediate risk group,  since the mass they removed had infiltrated my left renal vein a lot but hadn't breached, but I likely had those pesky cells flowing round my system, I had all the discussions about pros and cons, surveillance or immunotherapy/chemo, I told the oncologist flat out I was doing immunotherapy, I have read the literature, I'm as ready for this as I can be (am totally not but what the hell am I gonna do otherwise !!!). First immunotherapy session went ok, though they had a hell of a time getting access to a vein, finally got one though, but my nurse who was wonderful said he would put in paperwork in case i may need a port as my veins weren't playing nice.

I'm due to get my next immunotherapy session in a couple of weeks and am fully expecting the side effects to kick in on that or the third one, but I have found I'm having trouble sleeping, am 3 months post surgery so I don't know if its from that, subconscious anxiety or what, I am pretty up beat most days though have days where I am crying a lot, I don't drive and have issues getting out and about socially due to past trauma (domestic violence, I am safe now), I've been sent invites for meetings and such but they're too far away for me to get to and there's nothing local for me to even attempt trying. 

I have my family around me but they have their own troubles and they're not coping with me having cancer, and I'm kind of stuck as to who to talk to, I have called my CNS a couple of times but she was unavailable and I didn't want to keep calling being a bother. 

So I'm currently trying to meditate and focus on the positives and possibilities on my own, but I would really love some input  from people who are on the same path fighting cancer.

  • I’m sorry you’re having such a tough time is there anything at your local hospital that you can access - there’s a Macmillan Hope course that I’ve been attending at mine that’s been helpful and one of the other people on it is able to book hospital transport. 

    My work outsources support via our payment provider etc, perhaps yours offers the same and you could have telephone / online counselling support and someone to talk to if getting out is a problem.

    The sleep, can’t help you there as I’m struggling with that at the moment. 

    Good luck with the immunotherapy. Vein issues, I was previously told wearing gloves before they need to cannulate can help or they’d have a heat bag to warm your veins up that seemed to do the trick. 

  • Hi Orca1, 

    I'm not sure I have any answers but wanted to say hello. Perhaps we could be cancer buddies or something. Would have preferred to join a different club if I'm honest but here we are hey? I am still waiting for my partial nephrectomy, hoping it will be in the next 2 weeks. I'm pretty upbeat and positive too but had a bit of a wobble last week. The not sleeping was getting me down too and my doctor prescribed antihistamines, but I have no idea if you can take them with immunotherapy. I'm learning so much, not so good stuff about this disease. Stuff I'm not able to process. I thought the nephrectomy would be a cure? Now I'm learning that might not be the case, shit, shit and double shit! 

    You sound like your coping really well with the immunotherapy. Well I'm not sure quite what I wanted say but guess I just wanted to say hello, I hear you.

    Much love gosh x 

  • Hi Gosh 

    It’s a journey we’re all on that as you say none of us would have wished for. I’m positive in the fact that I’m incredibly lucky mine was found as there were no symptoms and hopeful that it hasn’t spread…

    I’m getting ready to move to the next stage of what happens after the op…and the dreaded waiting for results. Not started immunotherapy or any other treatment yet…. and like you was hoping that once they operate that might be all that’s needed. The tips about the veins were from another medical issue. 

    Hope your sleeping has improved and the antihistamines are helping. 

    Hopefully you’ll get a date soon for your op, it’s surprising how quickly the op is upon you once you get a date. 

    Great to chat with you and I’m all for helping each other through x

  • Hi, i was wondering if there were any updates from those in this thread, especially regarding immunotherapy treatments? I started on this (Pembrolizumab) and have had 2 treatments so far. Side effects not too bad so far - mainly fatigue and a bit of nausea and digestive issues which I'm a bit prone to anyway! Hope you are all doing ok.

  • Hi, I'm on immunotherapy  (ipilimumab/novolumab ), but my RCC is metastatic so the objective (control/manage) is completely different to yours (prevent recurrence).  Pembro as an adjuvant treatment for kidney cancer is relatively new, so there may not be too many members in the same space.  

    Everyone's side effects from immunology are different.  Mine are non-impactful.  I don't get the common ones (itching, nausea, diarrhoa) but I have collected a few immune realted events (dry mouth, inflammation in the kidney - oh the irony! Dry eyes, incessant thirst.). 

    People are freqently worried after reading the patient info sheet and why would they not be!  Bear in mind that you won't get ALL the side efffects you read about in the leaflet.

    My first recognised side effect didn't occur until 3 months after I started treatment.