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triple m syndrome

mesaratz
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Hi All

I lost my wife on the 17th of March this year to the above, it has taken me 5 months to finally get her cremated due to having to have a post mortem.

When we spoke to the cancer specialist about taking both chemotherapy and immunotherapy NO ONE ever mentioned The above!

I know that it is extremely rare [ below 1%] but that is still somebody’s loved one that will get it, with the chances of dying between 38 to 60%. I just do not understand that on websites like this on [and Roy castle website] there is no mention of it.

Would we have changed our minds to her having Pembrolizumab I do not know as we never got told about.

So please people if you are having Pembrolizumab or any other immunotherapy drug check it out before it’s to later.

I still have no answers from anyone and I wait for the coroner to come back with a report or an inquest.

Carol and I were married for over 39 years and to not have her is something I am having trouble coping with, I go to bed every night hoping that I do not wake up and curse the day that I have.

Please people check the symptoms:

Heart Symptoms (Myocarditis)

  • Chest pain

  • Shortness of breath

  • Fast or irregular heartbeats

  • Dizziness or swelling in the legs

Muscle Symptoms (Myositis)

  • General body and muscle ache

  • Weakness in the upper arms and legs

  • Extreme tiredness

Nerve and Eye Symptoms (Myasthenia Gravis)

  • Drooping eyelids (ptosis)

  • Double vision

  • Trouble swallowing or slurred speech

  • Severe breathing trouble

Carol had the whole list but we had no idea what it was and I only found out after she had died.

  • Offline

    Hello, 

    How  good of you to post your message, with the view of helping others. I know its awful to loose your loved one under these or indeed any circumstances. I have learnt something today I looked up: triple m syndrome

    Thank you and I wish you all the best for the future one day at a time, Take care.

  • 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

  • Offline in reply to CRUK Nurse 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.

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