Immunotherapy

Marigold,

So sorry to hear of your diagnosis. Immunotherapy has worked very well for a lot of people in shrinking tumours.

I'm still undergoing treatment so cannot yet comment on it's effectiveness personally.

I imagine you will be offered Immunotherapy alongside targeted therapy. There can be side effects e.g. fatigue, diarrhoea, constipation,  nausea and sickness. There are others but you will be advised on these and macmillan has a lot of information  on this site.

One thing I would say from my own experience is that if you suffer from raised BP see your gp and get it sorted out now.

It  caused my initial Immunotherapy treatment to be postponed for 3 weeks and the targeted therapy for a further 2 weeks.  Apart from this I have, as yet, suffered no side effects.

I hope this helps but let me know if there is anything else.

Thinking of you.

Thank you, Librarian.

I have done the kidney biopsy, home again and waiting for the result but more  importantly the doctors plan, how to handle this belly monster.

First I was happy to hear immunotherapy, thinking this is the natural way to kill cancer, but now, I do not know.

How long do you have this procedure and is there any change? How do you fell yourself?

You mentioned some serious side effects, what is ok, if in the mean time your getting better.

I wish you a lovely weekend, thank you for your letter

Hi Marigol

All I can do is comment on my own personal experience. I received my diagnosis a year ago (ccRCC stage 4) after blood in my urine. Firstly I was seen by an urologist who decided to remove my left kidney. At the time he told me the plan was to remove the kidney then see what immunotherapy could do. Following a successful operation I was given 3 months to heal up before seeing a specialist Oncologist.

He gave me three options 

Do nothing, wait and monitor with further scans; Pros: no side effects from Immunotherapy, Cons: At some point there was a high likelihood things would start to develop and time lost etc.

Immunotherapy IV and tablet; Pros: Less chance of side effects chance of rapid results: Cons: Still may have side effects ongoing 4-6 weekly treatment with a daily pill.

Immunotherapy IV + Immunotherapy IV; Pros: better long term results, most effective treatment, Cons: Greater chance of side effects, An intense 9 week period of 4 infusions followed by steady 4-6 weekly treatment for as long as necessary.

He asked how I felt about suffering a little up front for the chance of a far better outcome and said if I was a relative of his this is what he would push for since my generally health is very good.

I opted for Immunotherapy IV + Immunotherapy IV; ipilimumab and Nivolumab, Currently I have progressed to Nivo only and I have joined a trial called REFINE (reduced frequency immunotherapy) which means I get my Nivo every 8 weeks.

I am in remission now, my two nodules in my lung are stable, I have approx. 18 months left on Immunotherapy my doctors are very happy with my progress and I am a huge fan, It has proved incredible. I feel fantastic and have no limitations to my life however, 

The treatment destroyed my production of thyroxine I will have to take thyroid tablets forever.

The treatment also stopped my adrenal glands producing cortisol I have to take cortisol tablets for life.

Until we worked it out with antihistamines I had terrible itching.

In retrospect I would not hesitate to do the same again but I was lucky, I was 1 of the 40% who got a response, everyone needs to look at there own circumstances before taking any decisions. I can only tell you about what happened to me. Happy to answer any questions you may have.

Hi Marigold,

For me the main issue has been my blood pressure. I have recently had my medication increased and am now on the maximum dose of two blood pressure meds.

Other than that and being a bit tired I am fine. I can't say much else as I only started my treatment a little over a month ago.

DC1's reply I found very interesting and full of useful information. I wasn't offered double immunotherapy but I will certainly ask my oncologist about it if my BP continues to be an issue with the targeted therapy.

As long as you have plenty of information you can question your oncologist to make sure you get the best treatment for yourself.

All the best.

1. Hey marigold,  so I had my first infusion the other day , so far finger's crossed everything has been fine , I'm hoping that continues.  Like DC1 said everyone is different so it has different effects on people,  hopefully everything will be good with yourself but as we are all in this together thats why we are here just give it a go you have nothing to lose from it , God bless you hope all goes well .