Progression

Hi Gigi,

There rally is no need to be sorry for 'venting'. This is the ideal place for exactly that. It often helps a great deal to just say/type things out loud. I find when i say how i feel to people they try and cheer me up. They don't seem to realise that i'm not miserable. I just want to express how I feel sometimes. 

You say your husband needs his mood lifting and i'm not surprised if he watches daytime TV all day. It is depressingly awful....lol.

I can totally relate to the worry of awaiting results of latest CT scan. Often referred to as 'scanxiety'. I'm having a CT scan this friday (tomorrow) and suddenly cancer is back at the front of my mind. 

I read posts of this forum whenever i feel sorry for myself and it helps me no end to read how other people are dealing with their lot. So many peoples personality comes out in what they write. And so many people are so brave and facing so much difficulty with a laugh (as well as tears no doubt). My admiration for everyone that posts anything is huge. And they, and you, should know that people read what you post and often take heart and comfort from the fact that they're not alone. And they have hope for you too that things will improve or that you may cope better, 

I hope results from scan are favourable/positive and many that don't comment on this forum will have their fingers crossed for you too.

All the best...Del.

Gigi1973 said:

Is it possible for the treatment to stop being effective over time and what other options are available? Anyone had experience of this?

I've discussed this at length with my oncologist because my way of coping is to be prepared for every eventuality.  So I bombard him with incessant questions and check I know what might happen next and what our response will be.  This is what I've learned and what I understand ->

The main benefits of immunotherapy (whatever "flavour") are to be gleaned at the start, and most definitely within the first 2 years.  This is why many people stop treatment after 2 years.  However, the benefits of the drug(s) continue even after 2 years.  Think of it a bit like a vaccine.  

As I understand it, the body may get used to a drug and the cancer can work out how to over-ride its effects.  This may manifest in new growth, or spread to a new organ, or the tumour or mets getting bigger.  

When this happens then the drug is withdrawn (not working so there's no point!) and the onco will suggest what to do next, what is appropriate for the situation.  I've got my next drug potentially lined up already, tivozanib.  It's a different kind of immunotherapy acting on a different antigen.  It's been chosen because it's had good results for people who have experienced immune related adverse events.  

But there are loads of different treatments out there.  I remember watching a video on the kidney cancer uk website of a very young girl diagnosed around 18 and she tried LOADS of different drugs, c 6+ and each one worked for a short while (few months).  

I also asked my onco "these drugs are going to stop working at some point, aren't they?".  "Not necessarily" was his reply.  

The usual timeline is to be on these drugs for 2 years and then we (onco + I) sit down for a Significant Review with a capital R.  It's likely I'll then stop the immunotherapy and just have the 3 month scans.  The plan will be to wait until there's new cancer activity and then hit it with a new drug.  People have stopped immunotherapy and lead a full functional life for many years afterwards.  I've seen the trial results!

I notice your husband is almost at the 2 years since treatment started.  Many people don't get to 2 years because they can't tolerate the drugs, so it's great he's had the optimal benefit.  Also, they also go for the highest drug doses, and yet the likely benefit is still the same on much lower doses. But they don't want to risk administering not enough and there's no benefit.   

I'm stage 4 spread to the lungs too.  In this situation the objective is always to control it, not to cure it.  Yeah sure, I was aiming for NED too, privately, as a stretch target.     

I see a lot of positives in your story - the A&A was effective, the cancer shrunk, financially you're OK. 

What about voluntary work?  There's loads out there and it's only a few hours a week or whatever is manageable.  Also, just because we have cancer, doesn't mean that we can't be members of clubs and have hobbies.  If work was all consuming, then there's time now.  Do you have an "Andy's Man Club" near you?  I always hear good reports from it.  

Don't forget to write down your questions for the 20th.  Please let us know how you get on.  

Sorry, I didn't mean to type so much.  I hope it's not overwhelming.  

I’m still coming to terms with the fact Nivolumab did not work at all after 22 months on Pazopanib. I’ll be back at the Beatson on 27th to discuss next option which I think might be lev/evo combo. I still don’t understand why I was only offered Nivolumab on its own instead of the IPO/Nivolumab combination. I talk to someone else who attends the Beatson. She was put on Nivolumab on its own after Pazopanib and has had the same outcome. It didn’t work at all. I hope it was not because of cost but I will be asking at appointment. Will also ask about treatment breaks as the levantinib side effects look bad

Hi Del. Thank you, you know you are right, I did feel better for just getting it off my chest. 
Hope all went well with your latest scan. My husbands appointment with the consultant has been brought forward to tomorrow so we’ll see what that brings. 
x

• Hi Mmum. Thank you for your post, your insight is very interesting. I also have read that after 2 years they look to stop the immuno so I am wondering what they plan to do next. His onco appointment has been brought forward to tomorrow so we’re getting our questions ready. 
  We’ve talked about voluntary work and it’s definitely a good idea. Hobbies, well he enjoys golf so once the better weather comes he may look at that again. Not heard of Andy’s Man Club, will Google it. 
  Very best wishes
• x

Great. Everything crossed for you both here  Gigi1973.

Hi Gigi, 

I think we all are in various stages of our treatment ( journey sounds like a X Factor comment) seriously I feel that it's so important for you both to talk or vent as you both have faced this together ( most people forget about partners.... wether it's husbands or wives or children or even the dog ...) I totally understand about your anxiety regarding the immutheraphy not working as well as it started off were the decrease in size is so small or constant that you see no improvement.Its over a year and a half since my radical necphemotary and my immutheraphy treatment which gave me really bad side effects, I also now am monitored for sacoiriods which may be partly because of the immutheraphy or just because I am lucky.

I totally agree CT scans are rubbish and hate the results even more ( I had several before they let me see one!!)

I also think that everyone on here is much stronger than they think and yes we all worry about things we have no control of but staying positive is a fight back against it.

Fingers crossed for you both.

Mike 

Hi Ian 436 I've been taking Lenvatinib and Everolimus since July. So far side effects have been very tolerable so fingers crossed for you.

Andy, thanks for that mate. I’m seeing consultant on Monday so will know more then. I’ll let you know.

Andy, are you on the highest dose, 18mg of levatinib and 5 mg of everolimus ? It seems some start on a lesser dose and others high dose