Saturday, 6 February 2016

Tumor growth during radiochemo therphy ?? Please help?!

Hello all
Please help in advising me
My dad finished his 6week course of radio plus chemo thearphy on Tuesday just gone.
He had surgery on the 10th of October they managed to get 80-90% of it.
He got rushed into hospital on the 3rd of December due to seizers they did a scan and there was no growth.
He started a 6week radio plus chemo on the 22nd of December and finished on Tuesday the 2nd of February.
He was just starting to get back to his normal self and then he started hilusinating (sorry for misspelling) and not responding.
I called the ambulance and they took him into hospital where on arrival he had a seizer, they then did a ct scan and said that the results show increase in tumor.
Thus broke me into a millions pieces.
I have dad on a cocktail approach taking lots of supplyments and repurposed drugs.
I.e Viagra dca omperizol lanzeprizol aspirin duloxitine melatonin metformin cannabis oil chorlquine , also he take keepera and steroids.
I have disifulim prozacs (instead of the duloxitine) and hopefully Celebrex ready to add to his next round of 5/23 high dose chemo.
I was wondering has any1 else had tumor growth during or just after initial radio plus chemo?
Coukd the ct scan be incorrect ?
Our oncologist said that sometimes the tumor can expanded before it coukd shrink due to the radio treatment , has this happened to any1 else?
Obivisly I know that tumor growth during radio plus chemo is a very very bad sign of how things will plan out I just pray that the tumor is expanding due to treatment.
I don't really know where to go from here it's clear that the cocktail I have tryed using has not worked if the tumor has grown.
Please any advise would be great I'm out of ideas
Sorry for all the spelling mistakes it's 2:15 am here and I'm still sat beside dad at the hospital.
Love to you all


  1. Hey Dayle,
    I am really so sorry to hear this. It can happen and I believe it can take a while for the effects of chemo and radiation to kick in and have an effect on the tumour. GBM is such a bitch. My Mum had growth during chemo/radiation too but on an area that was not previously operated on. I am going to post her story up on the blog tonight hopefully.
    How is your Dad right now? Can they operate on the new growth? Even if they say they can't then try and get a second opinion. I know of two neurosurgeons at JR in Oxford that I think are very good but I also know that another patient has benefited from a second opinion at UCLH.
    I also wanted to say if he is able to go for surgery then it could be important to come off the cocktail maybe a week before to a week after to make sure the blood clots properly but one thing at a time and all.
    I know of an oncologist who can prescribe Valcyte in the UK and the cheaper version of this too which is supposedly just as good.
    I am thinking of you and wishing you find lots of strength right now for you and your Dad.
    I will email you about Valcyte and the neurooncologists at JR that treated my Mum and seemed really good, just in case that might be of use.

  2. Hello Alison
    Thank you for the reply
    Yes dad is at the John Radcliffe right now and had surgery at the John Radcliffe on the 10th of October.
    Our consultant was mrs brojanic think I've spelt that right, and the surgeon well I can't remember the name.
    We are unsure of the options ATM . We haven't even heard from our oncologist yet just doctors from the neuro department at the jr.
    Dad's oncologist is dr blessing at the Churchill in oxford.
    Where is UCLH?
    They haven't even told use how much it's grown or anything yet they just told us it's grown it's a joke
    Yes I would very much love to hear about valcyte if you don't mind , is this something that you have tryed ?
    Many thanks

    1. Hi Dale, we experienced much the same . Our oncologist and neurosurgeon said most of it was regrowth but our radio oncologist thought that it was due to the radiation as new spot and residual tumour were all within the treated field. We thought about another operation but for various reasons went the Avastin route. Turns out that the radio oncologist was correct as it's coming up to 2 years next month and there hasn't been any regrowth every thing is stable.

  3. Haven't experienced growth during radiation/chemo, but didn't get a significant shrink and dad did decline quite a bit about 2/3 of the way in. I find that his condition can and does change often. We were told he was dying three different times (Sept, Oct, and Dec). I mean that to provide some encouragement. I hope things turn around for you. Our largest growth was about 4 weeks post diagnosis and a quadruple in size. Still dealing with that size I'm afraid.

    xoxo Annie

  4. Sorry to hear this Dayle, it sounds so frustrating. I know the feeling of just waiting and waiting for an update. I will email you. I just thought of Valcyte as it had been mentioned to us as an option if my Mum progressed on Temodar. But first thing for you I imagine is to find out more from the consultant and oncologist and what the scan results have to say. I will email you a few bits of info as mentioned above in case something might help.


  5. Hi Dayle,
    Sorry to hear about your dad. I also progressed through chemoradiation and ended up having another surgery in about another month your time. I am now trying very hard to get into a clinical trial and its been three months after my second surgery. Please don't loose hope. I'm sure there is something you can do. The people here do have good suggestions. I'm praying for you.

  6. Thank you very much for the surport
    Much needed
    I'm just struggling to get my head round the science behind it all , could this of grown from the 3rd of December till he started treatment on the 22nd ?
    Or from when he finished treatment on Tuesday until now?
    Surely it couldn't of grown whilst having treatment
    I fort that's what the chemo dose kill divining cells