Hello Tony, 

It's great to hear from you and that it's not all bad news. I am so pleased to see that you seem to be in good spirits and your wife is lucky to have such caring support by her side. I am myself unable to tell you more about methylation as this is not my area of expertise but I have moved your thread to our Ask the Nurses topic area and one of our nurses will respond to you in the next few days and will hopefully enlighten you on this concept.

Very best wishes to you and your wife. I hope she is doing well at the moment and that she responds well to treatment. 

Lucie, Cancer Chat Moderator

Thank you Lucie

Hi Tony and thanks for posting a question

I am sorry to hear about your wife's situation and appreciate this must be a difficult time for you both.

You are asking about methylation so I hope I can answer your question and give you a better understanding of this in your wife's case but it can be rather complicated to understand.

When a cancer is diagnosed sometimes the doctors request that the tumour cells genetic makeup is looked at more closely and tested for certain bio markers. Bio markers are specific biological changes to the DNA/RNA or proteins of a particular cancer type that can help predict how well a patient may do with treatment, as well as guide decisions about what the best treatment/s may be.

One of the biomarkers that can be checked for in gliomas is called MGMT (06- MethylGuanine DNA Methyl Transferase) and this can help doctors find out how effective chemotherapy involving alkylating agents in particular may be. You can read more about this on the brain tumour charity website here. 

If the tumour is found to be methylated it means the alkylating chemotherapy drugs can switch off ( or silence) the repair mechanism of a cancer cell enabling cell death and a better response to the treatment. 

I hope this helps but do get back if you need to or have further questions. You are also welcome to call out nurse helpline on 0808 800 4040, Monday-Friday 9-5.

All the best

Naomi

Thank you Naomi,

Took my time to reply I know, sometimes time just seems to diasappear. 
Your response makes sense and seems to fit in with what the Oncologist said at the time. My only reservation is that Sue had to cut short the Chemotherapy after two weeks (of six, daily tablet form). This was due to an adverse react to the treatment. It really damaged her blood system. Platelets, red and white cells all crashed, one after the other. Took months to recover from that. Chemotherapy was stopped by the Oncologist. The next phase of a six month program was also cancelled, never to be revisited. My concern is that the Methylation was linked to Chemotherapy rather than Radiotherapy.

That said, Sue is in good health all things considered. In fact in my ignorance I sometimes wonder if the prognosis was exaggerated. We were told to be prepared for the worse, Sue was given a 'limited life expectancy' status due to the Glioma being grade 4. Is it possible that this was inccauarate? Could she be in repreave with years ahead of her. I'm a natural optimist, the cancer appeared in September 2020, I'd like to think it's now gone, never to return. Can this happen?

Grateful for any advice or opinion.

Be good everyone.

Tony

Hello Tony and thank you for getting back to us.

I am really sorry but we are unable to tell you what your wife's prognosis is. This is because we are nurses who are not involved in her care. The best health professionals to know what it could be are the specialist doctors looking after her. They have all her medical details and know her situation much better than we or anyone here does. Having said all of this no one, not even her specialist team, can be 100 % accurate in what anyone's prognosis is, but their information about what it will be is the best.

I am sorry if this is disappointing to hear. If you feel you need to do speak with the team caring for your wife again, in particular you may find her specialist cancer nurse can give you more of an insight and time to discuss this.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline 

Hello Caroline,

Thank you for your detailed response. If I'm honest it's what I expected, no need to apologise. You cannot provide a response without knowing the exact medical situation. I realise this is something the specialist team can answer for me, should I ask them. My question was just me articulating my own thoughts and applying layman's logic.
I'm happy for things to be as they are, grateful even, just greedy for it all to continue. Like most here sometimes I struggle to believe how/why this happened at all and need to be reassured. 
Non of us know what the future holds, best not to enquire I think.

Best to you all.

Tony