Hi all,
I last updated in August to say that my wife's routine MRI (we are now 18 months post diagnosis and 8 months treatment free) showed stable level of enhancement (bad cancer stuff) but was still fairly minimal. She had another routine MRI last Sunday and we went home home hoping that the result of this one would be similar.
Well, the next day she had what I've come to call an episode of which she's now had several. I'll describe them because it would be good to hear from anyone who has experienced anything similar.
They start with her feeling dizziness and nausea. That is then followed by an overwhelming urge to open her bowels. Alongside all this are headaches which have been fairly constant since diagnosis. She is communicative throughout these about how bad she's feeling.
So with this change I rang the oncology team who asked for her to come in and be admitted. I won't bore you with the details of our journey through the Acute Medical Unit but it was not quick or straightforward despite us being asked to come in and despite there being a bed ready on the oncology ward.
We saw a doctor the next morning who asked for her dex to be increased from 2mg to 8mg day. They also increased her Keppra as they are concerned she might be having focal seizures.
This doctor also asked for early report of the MRI from radiology who have said that it shows tumour progression and cerebral oedema (fluid around the tumour) which is probably caused intracranial pressure which in turn is probably triggering the symptoms.
We were told my wife's consultant would be coming to see her but no sign after 3 days so they discharged her. She is still experiencing these episodes though they are milder but do require a commode in the bedroom as otherwise she wouldn't make it to the loo.
We have a meeting with the consultant next Friday which was already planned to discuss the MRI result. Clearly it isn't going to be good news and there's no way she's well enough to have any kind of second line chemo. I am suspecting we may be handed over to palliative/hospice care at this point which I always knew would happen one day but it's going to hurt to hear it out loud.
Thanks for listening and if anyone has seen something similar and whether they were seizure related that would be interesting to know.
I'll update again next Friday when we get the official verdict from the consultant.
Hope everyone is OK and keeping warm,
Chris
Oh Chris, sorry to hear this. Having half an answer on the scan is worse than no answer too.
G had period of multiple focal seizures although his symptoms were different. He would go all pins and needles in his arm (the hairs would stand on end) then he would zone out for short periods of time, occasionally losing consciousness. They advised me if any lasted more than 5 minutes that I was to call for help. I appreciate that these seizures can manifest in different ways depending on the tumour location.
The dex and increased Keppra should balance things out but if you feel these episodes are still too frequent, call the dr back. At this point, you are in the best place to feed back your concerns and any changes. It might be that they need to up the drugs a bit more to level things off. At one point G was on 3000 mg of Keppra and 16 mg of dex ( I think that was pretty much the max dose for each)
Wish there was something I could say or do to help here. Stay strong.
We were first told of tumour changes in November 2022 as you may recall. We were passed into the palliative care phase at the end of Feb this year and although at the time that felt very final, it was the best thing that could have happened as the local teams were so attentive and had time to get to know us as people. I can't sing the praises of out local hospice high enough. We had regular visits from March til Oct and when the time came they took great care of all of us.
One step at a time.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Well today we finally saw the consultant to understand fully what was going on from the latest MRI scan. It was not good news.
The tumour has progressed significantly since J's last scan in August. The steroids can keep down the inflammation for now but soon the tumour itself will start to impact brain function. We've agreed to try a bit more TMZ in the hope it slows things a little but tougher regimens like PCV are out of the question.
We've now been referred for hospice so they're visiting next week. It really feels like we're moving to a new stage. But (and Wee Me's post on this could not have been more timely) the tree goes up tomorrow with all the other decs. We make the mince pies and we warm the mulled warm because we have to just "keep on keeping on".
Oh Chris, I am so sorry to read this update. I really had hoped you would get better news.
Deep breaths though...one step at a time.
Having travelled the palliative care phase with G for 8 months it is not as scary as it first seems. I was a total mess when we were first introduced to our local hospice team but they really were fantastic. What I hope you find is that they provide a different level of care and compassion for all of you as a family. Remember though, just because they are being introduced now it doesn't mean that you need them just now. It is comforting to know they are there for when you do need them. Plus if you get to know them now it means you have familiar faces around you when things get to that stage. That in itself helps.
When we were passed into that phase we were also issued with our "just in case" box. Not sure if you're at that point yet. When I collected our drugs from Boots, the lovely girl at the pharmacy counter came out and said to me "here's your lucky bag" trying to make light of it to an extent. She took one look at me and asked if I was ok to which I replied "no" and promptly burst into tears in the middle of the shop. She too was fabulous. In fact she burst into tears too and sat with me as I cried. That scary box lived on top of our fridge for months before we touched it but like the link in to the hospice, it was a comfort to know that it was there "just in case".
One day at a time. You will get through this. Trust me on that.
Hope you have no dramas putting up the Christmas decorations. I had a 4 month old kitten helping me put up ours so it took three times as long as usual.
Reach out if there is anything I can do to support.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi all,
Just thought I'd update again as quite a lot has happened in the month since I originally started this thread (so it might be quite long, sorry!). As ever this is going to be very candid so look away now if bad news is not how you want to start the new year.
So following the hospital admission we saw the consultant knowing the news would be bad and it was. The tumour has progressed significantly since last scan in August. He said that PCV therapy wasn't an option as my wife is quite weak now and it would be too much. He did hesitantly suggest we could try rechallenging with temozolomide. My wife didn't like the idea of giving up just yet so temozolomide started again 3 weeks ago and as with last time no noticeable side effects.
The consultant also referred her to hospice support. As many of you (though I know not all) have mentioned before, this has been a massive help to me. Just knowing that someone is on the end of a phone whenever I need them is a huge help mentally. They also act like a hub for all of the other healthcare teams and seem to have batphones for our consultant, GP, district nurses, occupational therapy etc
One of the first things the hospice team did was organise the Just in Case meds through our GP. I went to the pharmacy on the 23rd December after some last minute present buying. It was very busy and at the counter I gave J's name and said there should be Just in Case Meds to pick up. They went and fetched the pharmacist who produced a large jiffy bag with "Just in Case" on it. She asked my relationship to the patient and when I said she's my wife I think we both nearly cried. So that Jiffy Bag is now safely stowed up in the high cupboard for when/if we need it.
J's symptoms have all just deteriorated slowly over the month. Her balance is now very poor and that combined with left sided weakness means walking even with a zimmer is really precarious with regular falls though nothing serious yet. Our daily walks are sadly a thing of the past. We hired a wheelchair from the Red Cross for a few weeks and now have a second-hand one which we use to attend appointments and get the occasional bit of fresh air whenever the rain stops.
She's sleeping a lot more like maybe 20 hours a day now. Her appetite has reduced even as the steroid dose has gone up (we're now at 6mg dex/day). Thankfully the dex is keeping any headaches at bay with just the odd day where we use oral morphine to manage things.
Personal care is getting more tricky. She regularly doesn't make it to the commode so we are getting through incontinence pants at a rate of knots. Thankfully she can still just about get in and out of the bath so we're not at strip wash stage.
Mentally she is still mostly herself, well as much as she has been since her first symptoms. I had thought by this stage her mind would have suffered more than her body but her level of confusion hasn't really changed much. She was really down after we met with the consultant so the GP prescribed some sertraline, an anti-depressant. That may have helped but with all the other symptoms it's difficult to tell. We were warned that it does cause an upset stomach. It certainly did that (I'll spare you the details) so I'm just passing on the warning!
The only really new symptom is vision changes. She regularly sees things that aren't there especially in her peripheral vision. Yesterday she was convinced our son was sat with us at the table when he was at a new year's party with friends. Like so much of this I've learnt not to stress about such things so I just go with it.
As for me I wrote into my work yesterday to say I now need to take long term sick leave so I can care full time. I really don't think I could sit in an online meeting anymore with her downstairs like this. Our two boys has been amazing throughout and are a massive source of support for me (and I hope me for them too). Unfortunately for them school has to continue with GCSEs now looming for the eldest so I need to look into mitigation circumstances as this is bound to affect his studies and potentially his grades.
So we meet again with the consultant on the 9th January to see if we continue with the temozolomide. I suspect he may suggest we "pause" treatment but it will probably depend on how she is on the day.
Sorry this has been a long post but I know how much I wanted this sort of detail earlier on in the journey so hopefully some find it useful.
As Wee Me said in the other thread I won't say HNY but do wish you all strength for this year and send love and hugs,
Chris
