Brigatinib side affects

Hi RonD 

living with the side effects of cancer treatment is hard. I think it is the one thing that is not spoken about enough. Cancer treatment affects your body and it is never the same again. I have several side effects of my treatment and whenever I mention it to my oncologist I am told “well you are alive “. This of course is the most important thing, but living with low mobility and pain is very difficult. Your oncologist treats the cancer, but there is no after care at all, not for people who are living with long term cancer on treatment, or for people who are now cured but are left with the debilitating after effects. 

Something that I now live which you mentioned, is neuropathy. The GP tried to ply me with more drugs to help with this, but that just left me feeling tired and in a zombie state. I have late onset neuropathy from the radiation I had to my lung 12 years ago. I have constant pins and needles across the top of my back, which spreads to my right arm, up my neck and on the worst days into my scalp. I have occasional shooting pain like electric shock that starts in my back and shoots down my arm. I drop things when this happens, and it completely takes my breath away. The only thing that I have found which brings me any comfort, is a massage pad that I brought from Amazon. You put it behind you and lean back whilst the pads make be around and massage my back. It also heats up which also helps, but I can’t use that function during this current heat wave. Sorry I am not able to help with ideas for neuropathy in hands or feet, as I have not experienced that, but hopefully someone else can share their experience with you. 

I also have very dry and itchy skin from my hormone therapy. I use epaderm cream which I buy over the counter from the chemist. I apply mine to wet skin before drying myself, it does seem to help me. I tried so many different creams before and this is the only one that has really helped. 

I am sorry you are experiencing these side effects. I know how exhausting it a make you feel. Hope you get some relief soon. 

Thanks Chellesimo

those comments really helped me because I can find very few people if any that has The  some issues.

You are quite right about the oncologist I suppose their job is keeping the cancer under control and bugger the side effects.I too try Epaderm cream along with a number of over-the-counter creams and ointment but no success yet.

how long with a number of over-the-counter creams and ointments but no success yet.

It is very reassuring that I’m not the only one to have the same feelings. There is plenty out there on the Internet but I don’t have a lot of confidence in most of it.

There is plenty out there on the Internet but I don’t have a lot of confidence in most of it.

Ron

Hi

I too have long term effects from treatment.  I had surgery for right sided breast cancer stage 2 in May 1991 and then six weeks daily radiotherapy, 36 sessions and an extra three days of intensive radiotherapy, meaning the machine was actually pressed straight onto my chest to give an intensive direct beam....a practice that does not exist anymore thankfully as it left the area on my chest feeling like it was on fire, I had blisters and peeling skin for a few weeks after that.

All these years later I still have neuropathic pain, and, like you, I get electric shocks going from my scalp and radiating down to my shoulder and right arm.  I also, especially in cold weather, have tender ribs underneath the suture line and around the armpit.  I was told by my oncologist at the time that the neuropathic pain and tender ribs was from the radiotherapy, but the electric shocks was from the surgery.  Apparently, because the cancer had spread into my lymph nodes, to get to all of my lymph nodes the surgery involved cutting through muscle and nerves.  These nerves are then permanently damaged and send wrong pain signals to the brain, hence the electric shocks.

Fast forward to 2023 and my diagnosis of left sided lung cancer.  The radiotherapy treatment I had has left me with pins and needles in my left arm and shoulder and radiating up to my neck.  Like you, I was offered numerous medications, i.e. Amitriptyline, Gabapentin etc., which I tried for a bit but they made me feel dozy, therefore I stopped year's ago and have learned to live with things as they are and just keep on trucking.

I laugh with friends and family that; from the waist up and the neck down I'm knackered, but the rest of me is fabulous 

Best wishes.

Ann

Thanks Ann, that is quite a  lovely conclusion. 

I think I’m coming round to the fact I just have to put up with these things and it is probably better than the alternative.

there is a few of us that feel that the full side-effects of treatment are not explained clearly but we probably all agree these health professionals do a fantastic job in keeping the cancer at bay in most cases..

Thanks for your response.

Ron

Thanks for starting this conversation.  I'm sorry to hear about the many unexpected side effects from your treatment.  But I'm grateful to you, and to those who replied describing theirs too because it kinda normalises mine which seem to have unexpectedly worsened lately.  I was discharged from care two years ago having no evidence of recurrence of Stage IIIA adenocarcinoma.  I'd had an upper right thoracotomy and lobectomy, and chemo (then neutropenic sepsis) then a recurrence 18 months later in 2 mediastinal nodes, considered inoperable, so more chemo and 6 weeks radiotherapy (more sepsis) then immunotherapy (durvalumab) for a year.  Several months after the radiotherapy I suffered a vertebra fracture at T6 ("within the radiation field") and a lot of coughing, phlegm and breathlessness which I'd expected to resolve, but which have got a bit worse.  I've found it difficult and quite scary not to receive any more routine follow-ups, but received prompt referrals and consults recently after becoming very wheezy and breathless after a chest infection.  So now I'm told there is "a lot of scarring and damage" due to all the treatment I've had, ie basically bronchectasis, that I'm just going to have to live with. I also have worsening arthritis, dry skin and a lot of fatigue which no-one has ever mentioned or enquired about before, but now you do, so maybe this is a normal consequence of survival too?  Don't get me wrong - I'm so incredibly thankful that I've survived over nine years now following the original diagnosis, but I wish I'd been told I would have these ongoing after-effects.  I also wish that for long-term survivors like me there was some kind of routine follow-up, even once a year, where we could have a scan and an exam and chat with a pulmonologist who could say, well you have this effect and that effect, but you're still clear of cancer and here's how you can best live with what has happened.....  Best wishes to you RonD, and to everyone else - we keep on keeping on right - with gratitude and grace, and it's good to have others to talk these things over with.