Update about my treatment

Hi

I don't think that skipping a couple of Nivo infusions will make too much of a difference. It is not the Nivo that affects your body but your body's response to the Nivo. I had Ipi alone in 2015. As you know, you only get four infusions of Ipi. My body's reponse, including resurgence of side effects, continued four months after my last Ipi infusion.

Given that Covid-19 is thought to over-stimulate the immune system in a minority of patients, leading to the most serious side effects, I can see why they do not want to stimulate your immune system with Nivo.

Imagine all those poor oncology nurses and doctors being told that 'terminally ill' patients would be classed as low priority if ventilators were short. They work with 'terminally ill' cancer patients every day and they know that many of them live long and active lives! No wonder the specialist nurse isn't very good at talking about it over the phone.

There is no sign of there being too few ventilators for the number of patients needing them. The lockdown has slowed the flow of seriously-ill patients, the use of the positive-pressure breathing masks has meant that fewer patients get put on ventilators and the supply of ventilators has increased.

Just don't sign anything that might restrict your access to treatment!

If I were you, I would ask that my next scan was done on time.

All the best

Hi lgrgdg90,

Its must be a huge disappointment, shock, even frightening to be told this and I empathise with how you must feel. I know a little about that as after severe side side effects following my first treatment of Dab / Tram and my first of Ippi/ Nivo; my consultant told me they will cannot give me any more as the risks are far too high.

As with other bumps in the road on this journey, I have put my faith in the certain knowledge that my team are right. They have shown many times over that they will do everything they can to pull me through this. I'm only here now because of their knowledge and skill, so I trust their judgement is right on this too.

Summer will be here sooner than we all think, and hopefully then your treatment will restart without issues. As a quick aside I'm hoping by then that my little weedy roses (which look like sticks in a pot of mud) bought as a quarantine project will be grown and flowering!

Take care

J

Thank you both for your advise. Today is another day the sun is shining and I feel more positive.When the doctor rings I will ask my questions which are mainly about how she sees my treatment going.I was told I need a pet scan at some point to see how much live activity there is. Again I feel things will work out and I do trust the health team just was frustrated it it wasn’t going smoothly. 

Take care 

My doctor rang today and I got some very positive advise. She said if things do change earlier than June they would move forward my treatment.    Also was told the results of my scan in much more detail than I got before. I now know it has gone from my lungs and I have no inflammation in them. One of my tumours near my kidney has shrunk and the other is stable. The one near my spine has almost disappeared and even though my bone has collapsed she didn’t seem to think it was a problem and I have no backache. 

I was anxious before and wasn’t sleeping well but now I hav3 the facts I feel much more reassured.Thank you again for your advise. Stay safe