Lymph node secondaries.

Hi KidneyBeen I am really not sure I can answer your questions, but I wanted to acknowledge your post. It really does sound as if you've been through a huge amount of treatment and I can certainly empathise with the experience that the cure seems more unpleasant than the disease, at least short term. I guess your consultant is the best person to help advise on your prognosis and I hope you are able to sit down and work through your options and likely outcomes soon.  Best wishes 

Irishgirl16 - Thanks for your response. I saw the consultant 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 patrticularly 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. 

Hi KidneyBeen,  sorry to hear about your recurrence of disease and also all the horrible side effects you've had from the treatments.

I've almost finished a year of immunotherapy for melanoma and have had minimal side effects.  It's not a toxic substance like chemo is therefore you may cope quite well with it.  Immunotherapy has appeared fairly recently and has had some great results for some people and especially for us in the melaoma community who have had no effective treatment for years.

You should get some more facts from your consultant to aid your decision really and discuss the likelihood of any side effects.  

Keep hope with you always x

Hello Allotment lover, thanks for your message. It's encouraging that maybe immunotherapy drugs may not be so toxic like the Chemo. I see the Consultant on Monday to review the latest blood tests and PET CT scan. This will determine the final choice of treatment to be administered, possibly Atezolizumab (Tecentriq). I have 31st set for the first dose, so will soon see how I get on.

Hope your appointment went ok KidneyBeen and that you've got some positive plans for treatment x

Thanks A L - Yes the latest scan shows little has changed for the last 3 months which is good. I go ahead with the I T drug as expected on 31/8, with repeat doses every 3 weeks, assuming no serious adverse reaction. So will see how it goes!  

Pleased to hear the scans show no more changes. Good luck for the treatment KidneyBeen.  Here's hoping you sail through it with no bad side effects and lots of tumour shrinkage!

Keep us posted on how it goes x

A few days on from first infusion and no major problems so far. Upset stomach for a couple of days immediately after, soon brought under control by the tablets supplied. The only other thing I have noticed, is a general lethargy, feeling slightly tired all the time, and rapid onset of fatigue, if I do anything fairly physical.

3 weeks between treatment sessions presumably purposely done to give plenty of time to recover. However, leaves me thinking I'd rather we got on with it a bit quicker. I'm thinking that the longer it goes on the more chance the disease will spread even more, and keep on growing, instead of being stopped and hopefully reduced! If this treatment doesn't help, the sooner we know that, the sooner maybe something else can be tried!

Hi KidneyBeen I had my immunotherapy 3 weekly and that was just to give the body time to absorb the drug and get used to it. Some people have their Pembro (the drug I had) 6 weekly but double the dose. All the drugs have different regimes.  The tiredness I experienced as well, a bone crushing tiredness that did wear off after about 6 months (I was having a year's worth of treatment)

There's more immunotherapy drugs appearing every month so I imagine they have some similar side effects and some different ones. Some people have very few side effects like me and others may need a change of drug so it's early days for you. Get plenty of rest, doesn't have to be sleep but just lying on the sofa is enough. Take care x

Hi there Allottment Lover - Sounds like you are a keen gardener, so probably glad that we are getting some rain at last!

I'm having a drug called Atezolizamab (akaTecentriq) quite a tongue twister! The list of possible side effects in the information provided is horrendous, but I suppose they have to warn you what might possibly happen, similarly to the Chemo I had previously, which did make me very unwell indeed!

So far no major problem, but only had the one dose, so will have to see as it progresses.I am retired, so no problem dealing with the tiredness, I just take life very gently, and do what I can, as I feel able. I will have to see what I can cope with on the golf course. I could use a golf buggy, and not do a full round if not quite up to it. So hopefully can maintain a reasonably normal lifestyle, which would be great!