Chemo paused, now issues with words/memory

Hi Rockwell,

We had to pause my wife's tmz after the fifth cycle due to low platelets. At that point she was relatively well in herself .

We waited another month and I seem to remember having to get her to eat a lot of dark green veg to help with platelets.

I'm so sorry your partner's original symptoms seem to be returning. Definitely mention this so the CNS and/or consultant when you see them.

When's her next MRI due? I know it's awful but until that happens I don't think anyone will be able to tell you whether the symptoms are indicative of returning growth or not.

I'll keep my fingers crossed for you both

Chris

Thanks Chris - I believe they would have been looking to do a scan after Round 3, but because of a seizure that took place in May, they did one in July which was okay (or "stable") and so I don't think they'd planned to do another one until after Round 6. 

Hiya Rockwell 

Obviously everyone’s journey is different and what goes for one doesn’t necessarily go for the next…

Word switching was one of the signs that made us realise there was progression with my Dad. For him it was using the wrong words for items (watch instead of phone… mayonnaise instead of magnolia). He had an MRI a couple of weeks after we noticed these symptoms start to happen and sadly it showed recurrence. 

This may not be the case for you guys but I want to be honest with our journey. 

I would raise any concerns and perhaps push for an MRI if you really feel the symptoms are becoming quite noticable quite quickly. 

Sending love xx 

Thanks GF92 - appreciate your words.

Hi Rockwell

To echo what the others have said, you should notify the medical team of any changes, however small, that you are noticing that worry you. It might just be a medication tweak that's needed.

My late husband G declined all treatment after the initial 6 weeks and tumour-wise on scans was stable for almost two years but during that time we did notice a decline in his cognitive ability and ability to find words. He would get the wrong word or make up words on occasion. It was worse if he was tired too. 

At one point the Dr did say that the pressure in the brain shifts and that that could be causing it. Once there was tumour re-growth the changes became more obvious. 

Everyone's experience is similar but different and it also depends on the area of the brain impacted by the tumour. In G's case it was in Broca's , the control centre for speech, language and understanding.

A GBM journey is an emotional rollercoaster ride but hang in there. You're doing great. Please remember that we're here for you. You're not alone.

love n hugs

Wee Me xx