Opinion on immunotherapy (Pembo for short)

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Hello to my KC family . This is my story. My kidney tumour was discovered accidentally I was being scanned for gallbladder trouble(I thought). My kidney was removed 9 weeks ago. I was expecting that to be the end of it so I was shocked to find out that they were offering me immunotherapy.  It’s my choice to take it or not.

my tumour was grade 2 and I have a 25% chance of reoccurrence within 5 years if I don’t take Pembo, if I take it it will reduce my chances to 16%.

I would like to hear from anyone who has experienced Pembo as I need to to weigh up the advantages V disadvantages of side effects.

thanks in advance,

Sandysea

  • It's really encouraging to hear you've been offered pembro adjuvant treatment.  KC is way behind other cancers with it's adjuvant approach.  Lots of other cancers have mop-up approaches but for us they are only just emerging now.  Is it standard or part of a trial?  Although I'm a huge fan of immunotherapy, I'm not on pembro and neither have I been on the surgery pathway.  You could use the search function to find discussions on pembro.  

  • Had   1st dose of adjuvant pembrolizumab    2nd one next thurs  .    My cancer was stage 3 when they removed  my whole left kidney , been told 50 % chance of it returning  in five years so strongly  advised to have pembrolizumab  . 

    Very tired but no diahorria  or rash  or sickness  with first one  .so thats good  will see what blood tests show and how 2nd treatment goes  Will keep you posted about  future treatments . It's all so worrying  isn't it    something none of us wanted to experience .  All the best to you .  

  • Hi SandySea, I'm sorry you have been through this, such a difficult decision but I'm sure there will be people who can share their experiences. I had a partial nephrectomy 5 weeks ago and have my follow up to find out the histology on Wednesday so I'm afraid I cant advise you but wishing you well for the future. I wanted to say that I am a member of a private members group on Facebook called kidney cancer uk support group. You may find some more info there too. I have found it more responsive and very supportive. 

    Kind regards Gosh 

  • I’m awaiting my results tomorrow - had my my left kidney out 6 weeks ago was stage 3 but at original consultation (before op) was told wouldn’t be offered anything - I’m now wondering what tomorrow holds in store….

    It’s hard to know what to do, but in the end you have to do what’s best for you. 

    Thinking of you. 

  • Thanks Artful,  I’m so pleased that your first treatment has gone well and genuinely hope that Thursday’s goes well to. I wasn’t expecting anything wrong with kidney as I has no symptoms but I think that most KC’s are found accidentally. I am booked in to start treatment on Monday 18th and I just hope and pray that it goes well. I am keeping positive and thankful that they found it when they did. Pls keep in touch and let me know how Thursday goes.  Sandysea

  • I’ve been on Macmillan for a few years now, but apart from initial contact with the nurses, not been in touch. 
    My story? About 2010 I was hit with a triple whammy of skin cancer, prostate cancer and then kidney cancer. 
    Well, the skin thing is a continuing saga, they dealt with KC first by a partial nephrectomy, leaving me 60% of my right kidney, then dealt with the prostate - first hormone implants then radical radiotherapy. This appears to have been totally successful! All was fine with the KC until 2 1/2 years ago when it raised its ugly head again. I was put on ‘watch & wait’ regime (though it was never explained what they were watching or waiting for!) and so after 2y 3m they decide (have I waited long enough?) that I should start immunotherapy with Pazopanib (where do they get these names?). After 6 weeks on this, and no real problems apart from exhaustion, I started passing blood. Is this a reaction to the Pazopanib? I don’t know. No one says. After a week in hospital I came out with a nephrostomy bag, and severe pain in my right kidney. That has gradually subdued to a dull ache but I’m taking in my stride. Resting loads (can’t do much more as I’m tired all the time) eating reasonably well, though my sense of taste is shot,The good news is I’ve stopped passing blood (is this normal?) and this last day or so I’ve not far of stopped passing urine into this bag (is this normal?) - I’m told I’ve got this drain fit 3 months! If so why? Why 3 months?! I realise removing it is not an easy or simple operation - but 3 months plus?!!! 
    The general hospital I’ve been in weren’t forthcoming with answers, I’m assuming they don’t want to say the wrong thing in case the oncologist has other views - but! The oncologist isn’t there for me to ask! Any answer would be better than none! 
    So, I’m back at home with my bag, waiting for an appointment with the oncology team (later this week as it happens) when I might get a better picture. My oncologist is top of her profession I’m told, but seems to lack a 1:1 dialogue ability with her patients, she’s not very forthcoming. Anyone else have this problem? 
    Personally speaking, when KC returned 2 1/2 y ago, I was quite depressed, taking it as a terminal illness. No one has told me any different. Am I just in the progression stages (& where am I on that scale?) of this illness? What else can I expect? I was told by the general hospital doc that the best option would now be to remove the offending kidney - something that was not considered feasible when it first re-appeared because of other health issues. So until I get to see the oncology team, I’m in no man’s land. The decision about my case was to be discussed last Wednesday at their multidisciplinary management meeting - perhaps they’ll tell me the outcome of that when I see the oncology team later this week? Who knows! 

  • Hi Artful, just wondering how long you felt tired for after your Pembo.  I have my first session on Monday 18th.  It will be every 6 weeks.  I’m just starting to feel almost normal after surgery and getting out and about, don’t fancy spending next 6 weeks lying on sofa. If that’s what it takes I guess I’ll just have to go with it.

    Hope today goes well for you.  Pls keep me posted.

    sandysea

  •  Have to say have felt very tired but not as much as after my operation  . Not having to  sleep  in the day  now but having  early nights . Had a cold a week after fist infusion but might of been going to have any way who knows .  No sickness or diahorria  so far thankfull for that . Have notice taste change  gone of coffee and have a sore tongue  Have been told that  second one might cause more side effects as its building up in rmy system  so  fingers crossed  that's  not true .  

  • My treatment  is every 3 weeks    .