Onco appointment

Oh wowzers!!  What a weird situation and, I have to say, a negative rationale from your onco. 

If you're high risk, then my understanding is that these ones are treated with pembro.  Perhaps others who've been in this situation can advise? 

If you have the pembro, or whatever immunotherapy is on-the-radar, and it doesn't work, the cancer returns, then that's moving on to the next stage.  A new treatment approach would be recommended.  It wouldn't be pembro because that's just "failed", but there are loads more immunotherapy drugs to choose from.  As a second "go" at immunotherapy, oncos frequently go for a TKI (eg *nib suffix drug) and Immune Checkpoint inhibitor (eg pembro, ipi,nivo, *mab suffix).  I watched a video on the kidney cancer UK website where a young girl in her 20s went through 4-5 different drugs to try and control the cancer.   Each one worked for a few months.   

Side effects vary by individual, but on the whole, immunotherapy is much better tolerated than chemo.  My nurse specialist shared this when I started.  But there are a couple of members on here who had an awful experience with immunotherapy.  

philw said:

I would not get access to the ‘ Good Stuff ‘ as she named it for a further 12 months .  

I find this a totally bizarre suggestion.  There is no "good stuff" with immunotherapy.  They're not ranked or categorised! There's lots of options and the onco recommends the best one in their opinion for your situation.   First I've heard mention of a 12 month timeframe too. 

If your RCC returned whilst on an immuno drug, then there's no point in re-trying it, even if it is labelled as "the good stuff".  It would be a new one, a different approach.  The same principle applies when it works and you take a break.  Back to the tried-and-trusted treatment that worked before.  I had that conversation with my onco recently.  

I'd ask for a second opinion from another onco and see if you get the same steer again.   I would also phone the helpline here and you'll get good open minded objective advice.  I asked for a second opinion from my onco because I didn't want to take steroids.   Onco was fine with it, and helped facilitate the 2nd opinion because it was the pharmacist at my GP I wanted to speak to.  

Yes thanks for that . It was a strange way of putting it and my wife and I were surprised . I felt she was trying to veer me away from starting immunotherapy though at the end she obviously said it was my choice . Alot people with my stage and grade would take it I believe, not 1 from 5 like my oncologist suggest . I also see that patients are advised to take immunotherapy with my stage and grade.it was quite the opposite I felt with me . The decision will be mine with some help from my wife and everybody on here are a great help too . I was also told that as I have never had an illness before and my recovery was so fast after the OP that my natural immune system is strong . Thats great but unfortunately cancer doesn’t play by those rules so I am still leaning slightly towards taking immunotherapy. 

You're absolutely right.  Cancer (and a lot more besides) doesn't play by those rules. 

I think you have to decide between side efects and benefits . Honestly you should take the medication and keep one eye on any unusual simptom If anything its wrong stop. 

Thanks very much 

Post open radical nephrectomy grade 4 followed by the appearance with many large abdominal mets I’ve had amazing results with pembrolizamub and levatanib. Initially very few problems then quite a few  at 6 month mark ones such as sore mouth, weight loss, no appetite, bowel  changes etc. have had daily pill dose reduced because I want to carry on as all my mets have disappeared from view after third PET Scan!

although I know my cancer will return I’m extremely lucky to have such good rapid results and hope side effects don’t return too badly as I also have to cope with grade four osteoarthritis of both hips and can’t have them replaced due to immunotherapy. Trying another analgesic to see it it helps because otherwise I consider I have sailed through my treatment immunotherapy wise.

Has anyone else been so fortunate on these drugs? One reads such doom laden statistics it’s hard to be positive at 75yrs old, but I am now as arthritis is much worse than the cancer now!

Thank you for your positivity, you sound so like me. I almost live in the sticks in beautiful Shropshire but can have most appointments at a local centre 15 miles away so don’t have your travel problems.

I've been coping with steroids , despite having only one adrenal gland, since I had a severe reaction after my first Pembo infusion and they thought I’d got cervical spine secondaries but eventually discovered it was reactive OA caused by drug- so taken off it for a while so I suppose that’s why the secondaries appeared. The steroids cured the pain and flare up . Only have knee flare ups now which occur too often I’m afraid.

in the meantime my hips and knees have got much worse hence the need for prednisolone but now I’m trying to reduce it very slowly as it is affecting my skin and healing processes. Hopefully some new pain killers will help.

I'm one year behind you, having had a diagnosis ( very large  mass no secondaries) after quickly loosing a lot of weight and feeling tired. It happened very quickly and I had no other symptoms such as pain or blood. Unfortunately I had to wait an endless time for surgery which was appalling. I knew how the system worked having been a nurse all my life so I just was on their backs all the time until I got there- theatre I mean.

you seem to have done remarkably well so far, I’m sorry the steroids have affected you. You’ve cheered me up this morning! mind you I’m not often down but arthritic pain is ghastly.

ill have to consider what way forward one day I’m sure. Balancing side effects against quality of life and all that. But meantime am enjoying the summer at last.

You are doing really well too Mistoff!

Coping with the arthritis AND the cancer is a lot to ask of anyone.

I feel positive most of the time, and accepting of my situation, being 'incurable'. After two years of living with cancer, I now regard it as my new 'normal' self. I am aware that my body is ageing, and my joints ache too, when I've been physically busy. So long as I can keep walking my dog and enjoying it, I feel that's OK for me. I'm not planning on asking for any help from medics about my joints....it's enough to cope with, dealing with cancer, adrenal insufficiency AND diverticular disease! 

I am so glad you are enjoying the summer! It has taken a long time to reach my part of the country. It is a beautiful day here, so I'm off out to enjoy it!

Stay strong!

Kate