After stage 3B groin dissection I had 6 out of 8 scheduled Pembros but in Jan ‘23 had a PNEUMONITIS side effect. Steroids ( Prednisolone) alongside Lansoprazole antacid. During 2023 my steroid/ antacid intake was very- in fact too high as due to lack of support I was self diagnosing recurrences/ self prescribing steroids. Later, on advice of a different hospital I avoided the steroids ( as from September ‘23) but from the same advice continued the Lansoprazole. I only stopped Lansoprazole a month ago via my own research and decision and began taking low dosage B12 and magnesium supplements.
I had several reinfections ( chest) in 2023 and in December a bad one eventually diagnosed as haemophilus influenzae. In terms of the cough/ mucus symptoms I recovered by end of January. However, I have never- if this makes sense- felt 100% ok since my pneumonitis side effect. Well, in truth since I started Pembro ( I initially had vitiligo followed by intense itching). I now have increasing periods of my body feeling very cold especially after eating. Also intermittent and uncontrollable outbursts of sadness/ tears and mild tremors in my hands/ head. In between times I can have a period of feeling pretty ok and my wife and I might attend a gig/ theatre etc but I then regress again. A rollercoaster.
I have asked my cancer specialist nurse and my plastic surgeon for immunology and/ or endocrinology checks but they won’t refer me within my cancer hospital. I have only this week had blood tests at another hospital but such have been the huge impacts on our lives for over a year by now. We cancel over half of our bookings, can’t commit to travel/ holidays, miss seeing our grandchildren , etc as I cannot predict from one week to the next how I will be. I am now having to seriously consider private medicine for immunology/ endocrinology checks- much against my moral compass. But I’m desperate.
Any shared experiences of what my ongoing side effect symptoms might be would be immensely useful . Thanks !
