Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Side effects of prophylactic cranial irradiation

Posted by
Hi there

I am new to this and was hoping I could find out more about the side effects of Prophylactic cranial irradiation.

My Mum was diagnosed with small cell lung cancer in January 2009. Following the diagnosis she began chemotherapy and radiotherapy. In total she has had 5 sessions of chemo and 25 sessions of radiotherapy.

The radiotherapy finished on 11th March. The last chemo session was the middle of April as the Doctors decided that the treatment wasn’t working. They have looked at the biopsy a few times and it has been difficult to confirm whether the tumour is small cell lung cancer or a carcinoid. They are taking another biopsy this week and hopefully that will give a more definite result. If it is a carcinoid the chances are that they can operate which would be fantastic.

As the Doctors were not sure about the type of lung cancer, they decided it was safer for Mum to have 10 sessions of Prophylactic cranial irradiation (PCI), just in case the cancer had spread to the brain (which I believe is common).

Mum finished the PCI treatment over 2 weeks ago now, but she is still feeling the terrible effects. Ever since the treatment ended she has been feeling nauseous and has been unable to eat much which is not good as she really needs to build herself up, she is tiny and only around 7 stone as it is.

The Doctors keep prescribing different anti-sickness drugs, she has now tried 5 different types and none of them work. Last week she went in for a blood transfusion, this has not helped unfortunately, we really thought it would help as last time she had one it made such a difference.

As well as feeling sick she is constantly tired and drowsy and has terrible headaches, she has no energy and is feeling very low as her hair is disappearing as each day goes by.

The Doctors are completely stumped as they say the side effects are not normally this bad and only last a short time; she had been feeling like this for almost 3 weeks now.

The Doctors are talking of admitting her to hospital now to keep an eye on her and are also carrying out an MRI scan to check the cancer hasn’t spread. I understand there is a chance it could have spread to the brain, but it just seems too much of a coincidence that the symptoms started after the PCI, she was feeling great before it began.

My reason for writing this is I just want to find out if anyone else has had PCI and if so what kind of side effects did you experience?

There is very little info on the web about PCI. What I have read says that side effects are mild and temporary.

I also wanted to hear from people who have lost their hair from PCI. Did it grow back and how long did it take?

I think the hardest thing for Mum is losing the hair. We had expected it to come out after the chemo, but it only thinned slightly which was a welcome surprise, so now that she is losing it at the end of the treatment she is feeling very depressed.

Any feedback or advice would be greatly appreciated.

Many thanks

Posted by

Hi Ciara I am sorry that your mum is going through this. 

Here is my recent experience of PCI.

I completed 6 rounds of chemotherapy for SCLC in December 2013, my results were pretty good, as my cancer is extensive they were better than hoped.  I agreed to the PCI dubiously as I've had issues with radiation from a previous cancer.

I started the radiation on Feb 3rd and completed on Feb 14th on the 16th all the front of my hair fell out in massive clumps.  Over the next few days the rest started to come out until i was left with a few bits of stubble.  I had bad burns to the top of my head, forehead and ears. I also came out in massive yellow lumps all over my head, the pain from them was excruciating, it turned out I had a massive infection of all the nerve endings.

I was told that the radiation continued to work for 7 - 10 days after the treatment ended and that I could be suffering from exhaustion for months after and that it may take months for my hair to regrow if it did at all.

4 weeks later there's still no sign of my hair regrowing, I have a bit more energy but it burns out quickly and I have to rest.  I've changed my diet to a super healthy diet with lots of fruit smoothies which is good  for me because i put on a lot of weight during chemo. 

I'm sorry I can't offer you anything more I can only give you a true account from my side.

Wishing you and your mum all the best on this rocky journey,  Dee