Are you Caring for a Partner & Parents with Dementia/Alzheimers
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Sorry but WTF Cancer is a fuck ... Arpie you have a support group here bigger than any family.... reach out if you need to sorry you are going through this ....
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Thanks for the support, guys ... it is a rough road ahead. I feel a lot better now, having seen the Onc and the beginning of a plan forming ...
So ... we Saw my BC Onc yesterday (now hubby’s Onc too.) We are getting the tumours ‘sequenced’ to find the best treatment for it, as it is a rare one - it costs, but will be worth it. They are comparing the old pathology slides to the new ones to see if any variation has occurred ... Also getting checked for Her2, as Herceptin May help if positive! Otherwise it will most likely be low dose chemo/TABs to try and slow it, but maintain quality of life and pain free.
Xx
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Hubby has started oral chemo this week - if he tolerates that OK without big side effects, they may add a weak solution of Oxplatin to the next session in Mid March. If the tablets DO affect him, we will drop the dose & not do the Oxyplatin.
We are still waiting for results on the sequencing - won't get them for another 3 weeks at least. I am feeling better in myself now that treatment has started. We had his twin brother visit last week with our nephew & they both enjoyed that. He has dementia too - so it was a bit like herding cats when we were out & about!
Damn! He is Her-, so can't go on Herceptin or Avastin. For the immunotherapy drug Keytruda to be 'on the table' he needs both MSI and PDL1 levels to be HIGH! But his MSI is low
.... so now waiting for the PDL1 results which aren't covered by Medicare, so costing $250 to be done, but well worth it. Keytruda isn't covered by PBS for Gastric cancer yet (it is for Lung & Melanoma tho.)
He is still 'fine' in himself - feeling no pain (which is amazing all the medicos) - it is his dementia that is blocking the pain signals, so at least there is ONE bonus to having dementia! Oh - and he's already forgotten the diagnosis, so that is the other bonus of dementia.
Last night Q&A on the ABC covered a lot of dementia issues - particularly in aged care centres - but the last question about the right to choose your Own End of Life options brought many to tears.
Check it out on iView. It also covers the current Parliament House rape issue - so skip to half way if you don’t want to see that bit .
https://www.abc.net.au/news/2021-02-26/dementia-patient-leaves-q+a-panel-on-aged-care-in-tears/13194334?utm_medium=social&utm_content=sf243409790&utm_campaign=abc_australia&utm_source=m.facebook.com&sf243409790=1&fbclid=IwAR0dOf7N08WmXM5AkD5pW9sTB7jBSjsEnsrMOLxwfg1KrybU6UMUfzoLukc
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Hi @arpie If hubby goes on Keytruda, watch out for loss of voice. If his body rejects it then that is a side effect. My FIL was doing really well on it for over six weeks until his body rejected it. He couldn't talk for months even though they took him off it straight away. Then again, that may be a blessing.1
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Thanks @Blossom1961 ... will keep an eye out for that if we go down that road xx take care xx0
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Sending positive thoughts,vibes ,prayers your way xx1
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Thanks guys. OK .... Hubby had the first 2 weeks of oral chemo tablets and didn't have too many side effects, then a week off - tho his feet/ankles have swollen up a fair bit - no nausea, ulcers, diarrhoea or pain ..... He HAS been very tired/weary so putting himself to bed most days for a nap. His cancer markers have increased a fair bit but the Onc says not to worry about that.
Sadly, his MSI and PDL1 markers are too low - so he is not a candidate for Immunotherapy I was keen to try it anyway, but the Onc (rightfully said) that it IS still a 'toxic treatment' and not to be taken lightly. The Next Generation Sequencing in the USA sadly didn't identify many treatments that would work on his mutations as they are not available in Aust ..... tho one may be useful but is not currently available for Gastric Cancer thru PBS, only for other cancers. Happy to pay for it if we have to - and may be able to get a reduction of cost thru compassionate grounds.
Today he had his first dose of 40% chemo infusion (to start off with) & restarts the tablets tomorrow. It took forever for the infusion to 'go thru' as he started feeling itchy early on (as an anaphylactic, that can indicate an allergic reaction.) So the treatment was stalled as they waited to see if it developed or not...... Then he had major foot cramping, so stalled again to allow that to 'pass' ..... so a long day at the office.
Our Onc is getting used to my printed list of questions re his treatment at each appt - and is actually quite impressed that I am researching stuff from UK & USA (and HAVE questions) as there are way more treatments than available in Aust. Apparently some people just sit there & nod. (Tho she is MUCH more approachable than his original Onc in 2010 who had the personality of a gnat!)
His twin brother & son are coming up again on Fri for a few days of hopefully quality time together ...5
