Hello mesaratz and thank you for posting on here

I am so sorry to hear about your wife and imagine this is an incredibly painful and upsetting time for you. I do hope you have the support of family and friends as you grieve your loss.

As you say triple m syndrome is very rare affecting less than 1% of people who have checkpoint inhibitors ( types of immunotherapy).

Whilst it isn't defined as triple m syndrome specifically these rare side effects are mentioned in the rare side effects of pembrolizumab page on the about cancer section of the website. If you look at these immunotherapy pages you will also see warning boxes to alert people about more serious side effects.

Patients are usually told about the more common side effects by their team as it is very difficult with time limitations to go through every possible side effect with every patient. However patients are also told to contact their team immediately with any severe side effects or worrying symptoms that may need addressing quickly.

I can appreciate how upset you are by this and hope you get a response and some more answers about what happened from the hospital and coroner very soon.

If you think you may benefit from some counselling and emotional support do reach out to someone like Cruse bereavement support. Do also speak with your GP if you are feeling particularly low and depressed so they can also support and help you through this difficult time.

Take care of yourself,

Naomi

HI cruck nurse Naomi

Thank you for getting back to me. I for one use to make sure that I looked up new medication that we would be give, I did not do this with the pembrolizumab as after speaking with the cancer team at the hospital she was been seen at, but the problem is that it SHOULD be pointed out, it is easy to be missed as people will see a problem (part of the triple M syndrome) and not make the connection let alone join the dots to something as serious and life threatening as triple M syndrome, if you look at the paperwork that we was given there a few pointers that would say that she was having problems but nothing to know she was going to die!

If it was at least pointed out that triple M syndrome is less likely to effect the person having the treatment and that they are more likely to win the lottery BUT it is still a chance.

We spoke to the helpline that we was given the number for and they did not connect the dots either, so we was left with no one knowing what she had.

When we got to the hospital they gave her antibiotics as they did not know anything about triple M syndrome either meaning that time was wasted in not giving her the steroids she needed, and by the time she had them it was way too late.

Is it to much to ask that people are warned about something that has such a high death rate?

If we had had more information they maybe she would have survived.

But if people are NOT told about this then someone loved one will die with A&E staff not knowing what they are dealing with! And that would be a tragedy.

Thank you for your time but I fear that website like this one will brush it off as triple M syndrome is far to unlikely to kill someone….. until it does.