Dad diagnosis and struggling to cope with sensitive pain.

Hi PoohBear79 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that your dad is in a lot of pain, which must be very distressing for both him and the whole family. Has he spoken to his hospital team about the pain he is in, as they should be able to sort out pain relief for him?

It would be great if you could pop something about your dad's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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So sorry to hear about your dad. Do you mind me asking how old he is ? My husband was diagnosed in January 2022 with mesothelioma, had 6 rounds of chemo which really shrunk the cancer, we found out 2 months ago. Can your dad not have this ? I wonder why they gave cancelled immunotherapy as you would not think the cancer would grow so fast, I imagine he had scans not long ago.  We have been told we have to wait 3 months to have a scan, so now scans every 3 months then immunotherapy  should things change. I thought everyone could have a chance.  My husband has no pain at the moment, so I’m not sure which painkillers are used, speak with the oncologist and get a second opinion of you feel you need one maybe…. So worrying. 

Hi Another Day

Thank you for your message.  Dad is 71.

We found out Friday that its been cancelled because his bloods and ct showed an infection (possibly bladder) and clots on the lungs, so he has to be clear of those before he can start immunotherapy.  I just wish they would explain these things over the phone sometimes rather than cause days of stress not knowing and fearing the worse.

Dad is still struggling with pain and breathless too but the Dr said the clots and infection will increase the breathlessness.

Is your husband quite well in himself now?  Is he able to enjoy life a bit more?  Dad just is so uncomfortable and tired he is hardly going out at all apart from Dr appointments.

Really hoping he is well enough for the immunotherapy in a few weeks time.

Thank you.  The hospital and local doctors have been very good at trying different pain relief.  We just haven't sussed it properly yet.  Hopefully he will find some relief soon. 

Ok so when my husband was diagnosed in jan2022 it was after he became breathless, with a sharp pain when breathing in. I took him to hospital, a scan showed  his lung was full of fluid (red) this was drained, since then he has been physically fine.  First 6 months we were absolutely devastated, always thinking the worst ! Then after the chemo which he tolerated with the special anti sickness drugs the scan showed shrinkage. This has given us both a new lease of life … I initially wanted him to start with immunotherapy but our oncologist said better to stick with chemo, it has worked. But I’m worried how things are now, next scan due January, it might have grown, hope not x 

My husband has taken codeine and paracetamol and also dyhrocodeine .  The codeine  did make him very sleepy too sleepy. He was fine on the dyhydrocodeine. .  Your dad may have tried these.  I’m sure the oncologist can advise you best, our oncologists  are so good with us and only want him to be comfortable. 

I'm pleased the chemo was so successful.  That sounds very promising.  The waiting between scans is horrible but him being so well sounds so positive.  

I think we're at the devastated stage ourselves, so hoping the immunotherapy will help if he can have it.   I will keep you posted on how the immunotherapy goes. 

Thank you thats really helpful.  Dad is so sleepy which really frustrates him so I will ask about the dyhydrocodeine. 

Thank you & really hope things go well for you.  If you are struggling to cope you can always chat to your doctor, we did. We weren't sleeping, was just horrible, but as soon as we got some hope and the chemo showed a shrinkage that helped enormously…