Sorry I've been away so long; it's been a tiring week, with fatigue and indigestion keeping me below the line (and losing a little more weight). Unfortunately, this has coincided with "no news"; either on dates for meetings to discuss " what next?", or for my next scan... as someone who craves information, this is hard for me, particularly since we've currently only got (old) mixed messages on the tumours' (then current) behaviour.
But all this was expected, both my state of health and the scheduling of our next steps; we just have to live with it. And things are, as we'd expect, looking up a little - we got out on Thursday for Reiki (me, bliss!) and Bowen (Diana); and last night we managed the 100 miles to come and see our son and two grandchildren (his wife's away)! First time we've made it down here, or anywhere so far since... well, probably my diagnosis!
They are marvellous, so full of energy - I'm "grandchild sitting", trying to keep them out of mischief, while Diana helps with the preparing ans packing for a camping holiday! Thankfully, the weather's meant to be OK, at least for these next few days!
Saturday, 30 August 2014
Friday, 22 August 2014
All change, maybe!
Well, one thing's definitely changed - this sensitivity to the cold! Having had cycle 2 of the new regime (that's 15 in total!), my hands' sensitivity to cold has become sensitivity to cool: step outside, on a chilly late afternoon and - oh boy! Exquisitely painful tingling!
But at least this is avoidable - just stay warm! Thank heavens for an Aga! All other previously unavoidable Folfiri side effects continue to be absent, and we're handling the indigestion a little better I think, partly because we understand the need to act quickly and preemptively, and...
...partly because we had an excellent session with the clinic's chemo-specialist dietitian while in the clinic yesterday. She reassured us that we cannot do more than we are with my diet - it is "well known" Folfox causes indigestion, weight loss is inevitable with chemo, and weight gain all but impossible. She therefore prescribed a dietary supplement (not I emphasise a dietary replacement!) that boosts both calories and protein by a significant %age, to be the basis of mini meals between my three main meals, in order to stabilise my weight....
...as well as suppress indigestion!! To such a degree that today I relied solely on the tummy protector (aided by the steroids!). So much so that we enjoyed a wonderful few hours at lunchtime with friends, and I'm still feeling really good!
So why "maybe" in the heading? Because my regime may not turn out as we thought, at least in the short term: there's a rare side effect of Avastin that I may be susceptible to, and which my Oncologist is "taking council" on to discuss options. I am having another scan soon to support this discussion. Nothing more for now, other than to say I am just as excited by one of the options, after which Avastin becomes a viable "weapon" again...
But at least this is avoidable - just stay warm! Thank heavens for an Aga! All other previously unavoidable Folfiri side effects continue to be absent, and we're handling the indigestion a little better I think, partly because we understand the need to act quickly and preemptively, and...
...partly because we had an excellent session with the clinic's chemo-specialist dietitian while in the clinic yesterday. She reassured us that we cannot do more than we are with my diet - it is "well known" Folfox causes indigestion, weight loss is inevitable with chemo, and weight gain all but impossible. She therefore prescribed a dietary supplement (not I emphasise a dietary replacement!) that boosts both calories and protein by a significant %age, to be the basis of mini meals between my three main meals, in order to stabilise my weight....
...as well as suppress indigestion!! To such a degree that today I relied solely on the tummy protector (aided by the steroids!). So much so that we enjoyed a wonderful few hours at lunchtime with friends, and I'm still feeling really good!
So why "maybe" in the heading? Because my regime may not turn out as we thought, at least in the short term: there's a rare side effect of Avastin that I may be susceptible to, and which my Oncologist is "taking council" on to discuss options. I am having another scan soon to support this discussion. Nothing more for now, other than to say I am just as excited by one of the options, after which Avastin becomes a viable "weapon" again...
Saturday, 16 August 2014
this is such a roller coaster
A week since my last posting... And quite a week. Once the steroids wore off, I took to my bed! Maybe predictable based on experience, but quite a change nonetheless. And mostly caused by just one wholely unexpected thing: permanent indigestion. Not ordinary indigestion, but "Folfox" indigestion, a permanent phenomenon 24 hours a day for days... Groan...
Sadly, this well known effect of Oxyplatin can be well handled, even prevented in some cases, by the tummy protector; and I've now been told to double the dose around therapy day... but I'd mistakenly been off it entirely for a full week beforehand! Groan * 2!! Anyway, while it was a real challenge for both of us, it is now wearing off.
But the great news is all other previous (Folfiri inspired) side effects seem to be much reduced, or even non existent, which makes a fantastic difference (except tiredness of course!) And this sensitivity to cold remains really weird! (For those asking, no sign yet of neuropathy - that's pins and needles but moreso to you and me.)
If we can handle the "uber-indigestion" then I think we can handle this for some while... It just needs to be working!
Sadly, this well known effect of Oxyplatin can be well handled, even prevented in some cases, by the tummy protector; and I've now been told to double the dose around therapy day... but I'd mistakenly been off it entirely for a full week beforehand! Groan * 2!! Anyway, while it was a real challenge for both of us, it is now wearing off.
But the great news is all other previous (Folfiri inspired) side effects seem to be much reduced, or even non existent, which makes a fantastic difference (except tiredness of course!) And this sensitivity to cold remains really weird! (For those asking, no sign yet of neuropathy - that's pins and needles but moreso to you and me.)
If we can handle the "uber-indigestion" then I think we can handle this for some while... It just needs to be working!
Saturday, 9 August 2014
Well that's better!
Or as per an earlier blog "what a difference a day makes?"!
First things first: as per our educated guess, "it is more than likely" that stopping the tummy protector two thursdays ago was indeed an oversight and caused my wholely unexpected dip. As a consequence a note has been made in my record and a discussion of "tummy protection" considered on a wider basis - both excellent news, but trumped by the practical personal step of also supplying an extra just-in-case "stash" (yes, stash!) Of protector to guard against future mishaps!! It also turns out that on particularly challenging days I can safely take a second (from the stash!): so i'm now covered "top, middle and bottom"!!!! (Apologies to the gameshow!)
As for " now" - the combination of steroids, return of the tummy protector, and absence (this first cycle) of the MAB (Avastin) means I am 100% better than two days ago. Previous (none tummy) side effects continue to wain, while not all of the new hopefully lesser ones have yet manifested themselves.
But one that has immediately made iself known is wierd!! Reaction to cold (only surfaces so far - not been down the chiller aisle of a supermarket!). Holding something straight from the fridge causes a strangely painful cold (VERY cold!) sensation in the fingertips! And the same in the soles of my feet on cold stone floors! And mouth drinking fridge cold drinks... Whether this is intermittent (only immediately after treatment?) or gets worse with increasing cycles is yet to be seen, but definitely tolerable, and avoidable. But WIERD!
So, back on an even keel, riding higher in the water, and generally far more "up" than we were!! "Way to go, Folfox!"
First things first: as per our educated guess, "it is more than likely" that stopping the tummy protector two thursdays ago was indeed an oversight and caused my wholely unexpected dip. As a consequence a note has been made in my record and a discussion of "tummy protection" considered on a wider basis - both excellent news, but trumped by the practical personal step of also supplying an extra just-in-case "stash" (yes, stash!) Of protector to guard against future mishaps!! It also turns out that on particularly challenging days I can safely take a second (from the stash!): so i'm now covered "top, middle and bottom"!!!! (Apologies to the gameshow!)
As for " now" - the combination of steroids, return of the tummy protector, and absence (this first cycle) of the MAB (Avastin) means I am 100% better than two days ago. Previous (none tummy) side effects continue to wain, while not all of the new hopefully lesser ones have yet manifested themselves.
But one that has immediately made iself known is wierd!! Reaction to cold (only surfaces so far - not been down the chiller aisle of a supermarket!). Holding something straight from the fridge causes a strangely painful cold (VERY cold!) sensation in the fingertips! And the same in the soles of my feet on cold stone floors! And mouth drinking fridge cold drinks... Whether this is intermittent (only immediately after treatment?) or gets worse with increasing cycles is yet to be seen, but definitely tolerable, and avoidable. But WIERD!
So, back on an even keel, riding higher in the water, and generally far more "up" than we were!! "Way to go, Folfox!"
Thursday, 7 August 2014
A good week off? Not... :-(
Well that was disappointing... the good week off turned out not to be: constant tummy troubles! All week too; we forgot two things - the Mg infusion last Thursday has significant tummy side effects, and I was "off" the tummy protector drug :-(
And, a good thing this, probably the Folfiri and Cetuximab were STILL working?
So we're now on stage 2, with my first cycle of Folfox well underway here in the clinic. Since it's the first time, I'll have to sit for 2 hours while they check my reaction to the Oxyplatin, so therefore here for 6+ hours! Avastin enters the fray next time.
And, being out of my original cycle, (now "even" weeks rather than "odd"!) we've met another group of people, just as positive and focused on success as my old group!
And we too remain positive and hopeful - there are still weapons at our disposal, all of which have good track records; and my body and mind remain strong (most of the time!) in spite of all the side-effects!
And, a good thing this, probably the Folfiri and Cetuximab were STILL working?
So we're now on stage 2, with my first cycle of Folfox well underway here in the clinic. Since it's the first time, I'll have to sit for 2 hours while they check my reaction to the Oxyplatin, so therefore here for 6+ hours! Avastin enters the fray next time.
And, being out of my original cycle, (now "even" weeks rather than "odd"!) we've met another group of people, just as positive and focused on success as my old group!
And we too remain positive and hopeful - there are still weapons at our disposal, all of which have good track records; and my body and mind remain strong (most of the time!) in spite of all the side-effects!
Friday, 1 August 2014
Mixed news
Well what a week.
Jumping to the end and reading backwards... my treatment is changing from Folfiri, to Folfox. The difference is on the key drug (from Irinotecan to Oxaliplatin: see what they did with the trade names?), which has a different action.
We're changing because yesterday's hastily arranged scan indicates the cancer in my liver is showing signs of resistance to Folfiri. This is to be expected (and was suspected when my CEA number stopped falling, even though the timing seems a tad earlier than the average) - in the clinic roughly half of us are on one with the others on the other; and many if not most of us switch at some point (as it happens, a fellow patient we know well is going the opposite way at the same time).
I'm also switching MAB, to Avastin(!) which complements Folfox and also has a different action to Cetuximab.
But the really good news is the scan shows it's not spread, that the primary is stable, and (most critically) the pains in my lower ribs I had on Monday, which caused the scan's hasty reschedule, were not as first thought related to any "developments" in either bowel or liver - not that any of us (medical or otherwise) can now explain them!
It also seems the effect so far of the resistance is minor and we are definitely "steady as she goes", just on a different ship (bear in mind the fact that we have something to change to is a modern miracle).
It also seems the effect so far of the resistance is minor and we are definitely "steady as she goes", just on a different ship (bear in mind the fact that we have something to change to is a modern miracle).
Side effects may be slightly different: trading current "significant" funny tummy for a less testing digestive system, but with tingling fingers and sensitivity to cold. On balance, l'll happily make the trade!
Oh, and a small short term benefit: because of the short notice of the switch, we get an extra week off, starting Folfox next Thursday with Avastin added in the next cycle - so we're looking forward to a GOOD week "off"!!
Subscribe to:
Posts (Atom)