PCI radiotherapy to head

Hi jaunty, 

Welcome to the site and I am sorry you have had to join us. I have read your profile and you have had a rough time. You do not say if you have non small cell lung cancer or small cell lung cancer.  With SCLC it is common to have radiotherapy as there is a strong chance of brain metastasis, and this treatment is very successful.  You are the only person who can make that decision and I'm sure people who have had this treatment will respond soon. 

Wishing you all the best 

Albondigas x

Hi Jaunty

I have copied below a recent post that I wrote in answer to another person looking for advice on PCI. I hope you don't mind me cutting and pasting it? This was my experience undertaken at the end of my chemo/radiotherapy combo treatment for SCLC back in 2011 (and I am still here; alive and very much kicking!)

PCI; it is part of the treatment plan and usually takes place 6 - 8 weeks after the end of the chemo/radiotherapy (depending on the outcome of those treatments). SCLC does like to travel but unfortunately chemo is not good at getting through the brain lining.  The PCI radiotherapy is relatively low dose and is designed to eliminate any random SCLC cells that may have 'escaped and travelled'. As I wrote in an earlier post, I had each of my 10 daily sessions in the morning before I went to work; I had no side effects other than losing the little hair that had started to grow back.  My approach was that it was no point only having part of the treatment; I wanted everything they could throw at me. The risk of not having this treatment is far greater than any risk of having it.

I hope this helps in your decision making. I am very happy to answer any questions you may have.

Kegsy x

Thank you,Thank you Thank you!!!! i am so very happy to hear you are OK. after having the PCI I am definitely going for it depending on final outcome of my chemo for SCLC with secondary to liver. The cancer spread to liver halved in size half way through chemo Yay!! but they cant quite see the lung nodule to be sure if it has shrunk or not,hoping after the next and final chemo cycle they will be able to see properly. It gives so much hope reading other peoples posts,thank you again                        Jaunty

Thank you Abondigas, it is with knowledge and experience of others , being armed with facts etc that i can make an informed decisions about treatments,good to hear it is successful,have had some great responses from others already and am feeling very positive                                                                                                             Jaunty

Hi Jaunty

You are very welcome; I am glad my reply has helped.

Good luck with the rest of your chemo.

Kegsy x

Hi Kegsy, i agree entirely, Half measures avail us nothing.It's a bit like having 2 sips of water when you actually need 3 sips to survive ,putting it simply. i have made some enquiries today with regard to PCI and also some Radiotherapy for secondary liver too. I was told that some people after the PCI had  not felt the same in themselves,what that means exactly i don't know but will be looking at statistics etc  There is also some concern about it causing  some level of Dimentia.                Thanks to you again              Jaunty

Hi Jaunty

It is great that you are doing your research; I did wonder about radiotherapy for the liver . Also look into radiotherapy to the lung if the chemo hasn't got rid of all of it.

CPI: I think the dementia aspect was originally  linked to the timing of the CPI directly following or during chemo; to address this the current protocol is that CPI is given at least 6-8 weeks after the last cycle of chemo. My view was that with or without the CPI no-one could predict or calculate whether I would get dementia at some time in the future; however without the CPI there was a high probability of the SCLC appearing in my brain.

Be careful with any cancer stats (CPI, SCLC survival rates etc) as they tend to be at least 2 years out of date and based on the averages from the previous 10 years. In addition they do not take into account developments in treatments etc over that period.

Please keep us all up to date with your progress.

Kegsy x

Hi Kegsy, thanks for that,yes will ask about radiotherapy to the lung nodule too if has not gone. I am so pleased that PCI is generally given 6-8 weeks after chemo has finished as i have a weeks holiday and then family arriving for a couple of weeks so if i have it timing should fit in with that. We had to cancel all trips and holiday last year due to me being so poorly with this,so am really looking forward to it soon.It has been a bit of a struggle for last 7 months adjusting, accepting and getting things in place so to speak,i want a bit of fun now,whilst i still can. I had very low sodium due to the cancer, the chemo finally seems to be stable for now,did you have that problem at all? i Don't know hardly anyone who has. It is very debilitating with lots of symptoms,none are pleasant.   Keep well     Jaunty

Hi

So sorry that you have had a rough time recently. Although my journey had a few issues, in comparison to the stories I read on here it was relatively easy.

No I didn't have any issues with my sodium levels, although there are some on here who have. My issue was that due to the combined treatment my white and red blood cell counts went through the floor. So after both the 3rd and 4th cycles I had blood transfusions for the red count (2 units each time) and for the white cells I self-injected to boost the bone marrow production. The blood transfusions were amazing; I went into each out-patient session barely able to walk and looking a deathly shade of grey and virtually skipped out with colour back in my cheeks.  If only all treatments were so instantly effective!

It is always good to have things to look forward to; it's the adult version of a spoonful of sugar helping the medicine to go down!

Good luck with the rest of the chemo, and let us all know how the possibility of radiotherapy goes.

Kegsy x

Hi Kegsy, Good to hear you have been having blood transfusions that have made you feel so much better and to enable you to have further treatment.  My consultant has told me he is going to give me PCI radiotherapy to head.  I researched that the dosage is quite important  if we dont wish to get dementia or nerve damage etc from the therapy, about 2GY dosage ,above this i believe increases the risk of those side effects. Will be given daily for 10 days  i think.in a couple of months time. Finished my 6th and last chemo cycle this wednesday YAY! Taking a spoonful of sugar adult way very soon hope you are too ,keep me posted on your progress    Jaunty xx