Thats really good news for both of you. I've been following this thread from arms length for fear of bad news like a pussy. I'm so happy for the pair of you and your families
It's fabulous to have such a positive thread even though borne out of illness. The optimism and resolve is inspiring, likewise the general support from followers. All best wishes to Beds, DA9 and Mrs Chippy for full recoveries in the near future. Long may it continue.
Glad to say I’ve just completed my last infusion, two weeks of tablets now, then I’m done. Gotta put up with the side affects, pins & needles, reaction to anything cold, drinks or touch, tiredness and a bit of nausea, but that will wain slowly. Waiting on a CT scan date which will show if I’m winning, the McMillan Brook unit nurses and staff are fairly confident, then a telephone consultation with the Oncologist at the end of June, so fingers crossed. Can honestly say that I’ve been through some hard times in my life, some of them self inflicted, but this has been the toughest, not out of the woods yet, but I’m taking the positives I am being told, but I will update. Good luck beds and Mrs Chippy, and a huge thank you to all of you have wished me the best on here or via DM, it really has helped.
LLLABH 🔴⚪️🔴⚪️
That all sounds familiar!
Finished my latest course of chemo last month and had my CT scan this morning so should find out next week.
All the best for the final furlong!
Only just seen this thread but, seeing as he's mentioned it on here himself, just wanted to say that my old mate @Boom has had the all clear.
Absolutely made up for him we are and he's currently away sunning himself, no doubt with beers in hand and a liberal application of baby oil all over! 🤣
Mind you, he knows I've still got my eye on his trainer collection ........
Glad to say I’ve just completed my last infusion, two weeks of tablets now, then I’m done. Gotta put up with the side affects, pins & needles, reaction to anything cold, drinks or touch, tiredness and a bit of nausea, but that will wain slowly. Waiting on a CT scan date which will show if I’m winning, the McMillan Brook unit nurses and staff are fairly confident, then a telephone consultation with the Oncologist at the end of June, so fingers crossed. Can honestly say that I’ve been through some hard times in my life, some of them self inflicted, but this has been the toughest, not out of the woods yet, but I’m taking the positives I am being told, but I will update. Good luck beds and Mrs Chippy, and a huge thank you to all of you have wished me the best on here or via DM, it really has helped.
LLLABH 🔴⚪️🔴⚪️
That all sounds familiar!
Finished my latest course of chemo last month and had my CT scan this morning so should find out next week.
All the best for the final furlong!
Only just seen this thread but, seeing as he's mentioned it on here himself, just wanted to say that my old mate @Boom has had the all clear.
Absolutely made up for him we are and he's currently away sunning himself, no doubt with beers in hand and a liberal application of baby oil all over! 🤣
Mind you, he knows I've still got my eye on his trainer collection ........
So please you're all clear @DA9. Glad too hear that @Boom is free. Sounding like good news for @Bedsaddick as well so hopefully this thread will run with some more official congrats for him very soon. If ever I get some bad health news I'm using you guys as my inspiration.
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
better safe than sorry @redman. It’s a bugger but for the best to go through it if it’s such definitive advice. Excellent news so far though. Stick at it mate. All the best.
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
I’m expecting to be told pretty much the same at my appointment next week . Did they outline the pros and cons of taking tablets or Intravenously ?
@redman having it intravenously sounds like a bit of a faff, have they suggested what the pro's might be? Is it a different formulation that they hope will be more effective, or just doing it IV means they can control the dose better, so less side effects for the same treatment?
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
I had this same plan of action although 6 years ago now. I had chemo after my whipple intravenously 3 weeks on, one week off for 6 months. It was tough but honestly probably not as bad as I expected it to be. I was pretty weak by the last one but bounced back very quickly. Like you I had clear margins after the whipple but they suggested I went for chemo just to make sure and I thought I don’t want to regret it down the line if I don’t do it. I have a scan each year to check how I’m doing. Best of luck with the chemo and recovery from the whipple which is tough going.
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
better safe than sorry @redman. It’s a bugger but for the best to go through it if it’s such definitive advice. Excellent news so far though. Stick at it mate. All the best.
I'm sure you'll make the right choice & will come out the other side stronger with more confidence for the future.
Stay strong, Ian and remember we're all here for you if you need us.
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
I had this same plan of action although 6 years ago now. I had chemo after my whipple intravenously 3 weeks on, one week off for 6 months. It was tough but honestly probably not as bad as I expected it to be. I was pretty weak by the last one but bounced back very quickly. Like you I had clear margins after the whipple but they suggested I went for chemo just to make sure and I thought I don’t want to regret it down the line if I don’t do it. I have a scan each year to check how I’m doing. Best of luck with the chemo and recovery from the whipple which is tough going.
@Nug out of curiosity did you find the recovery from the whipple surgery tougher than the chemo afterwards ?
I can’t imaging anything tougher than the recovery
Very good news, well done Beds and DA, you give everyone encouragement by the battles you fought. Hope you two and Redman go from strength to strength.
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
I had this same plan of action although 6 years ago now. I had chemo after my whipple intravenously 3 weeks on, one week off for 6 months. It was tough but honestly probably not as bad as I expected it to be. I was pretty weak by the last one but bounced back very quickly. Like you I had clear margins after the whipple but they suggested I went for chemo just to make sure and I thought I don’t want to regret it down the line if I don’t do it. I have a scan each year to check how I’m doing. Best of luck with the chemo and recovery from the whipple which is tough going.
@Nug out of curiosity did you find the recovery from the whipple surgery tougher than the chemo afterwards ?
I can’t imaging anything tougher than the recovery
It’s hard to say as I started chemo only about a month after surgery and it was all happening at the same time but I think the surgery recovery was much harder if I’m honest. I definitely got better every day but it is such a gradual process and I would say it took about a year to feel almost normal. Once the chemo was over my progress accelerated very quickly as I got my strength back. If I was to try to describe the chemo I had it was a bit like a hangover for a day or two. Now apart from taking creon I have no effects from the surgery. My digestion system is pretty normal now, early on I had issues but again they gradually started to disappear. A few foods I have to avoid, but then who doesn’t. Hang in there it does improve but it is slow at times.
Forgive me for popping in but this is a hugely uplifting thread, it's great that people are open and honest about the issues they face. Keep strong and positive
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
I’m expecting to be told pretty much the same at my appointment next week . Did they outline the pros and cons of taking tablets or Intravenously ?
To be honest it got quite technical. The tablets they were recomending for me are Capecitabine. I would basically take these at home orally twice a day on days 1 to 14, every 21days for 8 cycles. I would visit my local hospital (Darent Valley) on occassions to monitor dose level. The Intravenous route was on day 1 and 8, every 21 days for 8 cycles. So a lot less often but would have to go to Medway Hospital on days 1 and 8 for the dose. The drug proposed is Gemcitabine-Cisplatin. The long term benefits are anticipated to be similar although it is hoped the intravenus has side effects for less time during the treatment (as you don't have it so often). My mind keeps coming back to word trial on the intravenus drug though which leans me towards the proven tablets. The other thing is if I chose the intravenus method, I would only have a 50% chance of getting the new drug (and not know) as it's a trial. I have a week or two to make up my mind so will do some more digging and asking. As this trial is at Medway you may not be offered this intravenus drug (although I believe there are others). I will be very interested to hear back after you have had your appointment and what they recommend fo you. Good luck
Following my Whipple surgery I saw an oncologist this afternoon. Confirmed the good news that all of cancerous tissue removed. However want me to have chemo. It will start in about a months time and go on for 24 weeks in total. 8 cycles of 2 weeks on and 1 week off. Going to be a pretty horrible 6 months but reduces chances of it coming back so they don't seem in any doubt its the right thing to do.
They actually are giving me 2 choices of having it. Tablet form which I take at home which is what most people in past have had and they call the gold standard. Alternatively I could have it intravenously in a new trial they are doing. My instinct is go with the tried and trusted gold standard tablets although have some time to think about and confirm.
Not the greatest news but I'm so fortunate they kept testing despite all early biopses being negative
I’m expecting to be told pretty much the same at my appointment next week . Did they outline the pros and cons of taking tablets or Intravenously ?
To be honest it got quite technical. The tablets they were recomending for me are Capecitabine. I would basically take these at home orally twice a day on days 1 to 14, every 21days for 8 cycles. I would visit my local hospital (Darent Valley) on occassions to monitor dose level. The Intravenous route was on day 1 and 8, every 21 days for 8 cycles. So a lot less often but would have to go to Medway Hospital on days 1 and 8 for the dose. The drug proposed is Gemcitabine-Cisplatin. The long term benefits are anticipated to be similar although it is hoped the intravenus has side effects for less time during the treatment (as you don't have it so often). My mind keeps coming back to word trial on the intravenus drug though which leans me towards the proven tablets. The other thing is if I chose the intravenus method, I would only have a 50% chance of getting the new drug (and not know) as it's a trial. I have a week or two to make up my mind so will do some more digging and asking. As this trial is at Medway you may not be offered this intravenus drug (although I believe there are others). I will be very interested to hear back after you have had your appointment and what they recommend fo you. Good luck
Gemcitabine was the drug I had but it wasn’t combined with anything else. Not sure how relevant this is but the intravenous for 6 months completely knackered my veins and they have a real problem now getting a cannula in when I go for scans. It often takes multiple attempts and can be painful although nothing too terrible. I didn’t have a port for the chemo which I think some people do.
@Bedsaddick Have you started chemo yet? What sort are you having and if you've started how is it going?
I’m not having Chemo now . The Oncologist said that the the Sarcoma Tumor was so rare that mopping any cells up that may be left behind wouldn’t work. The surgeon was confident that he’d removed all the cancer .
Coincidentally I’m sitting outside The Wellington Hospital in St Johns Wood waiting to go in for my three month CT scan . Fingers crossed 🤞
@Bedsaddick Have you started chemo yet? What sort are you having and if you've started how is it going?
I’m not having Chemo now . The Oncologist said that the the Sarcoma Tumor was so rare that mopping any cells up that may be left behind wouldn’t work. The surgeon was confident that he’d removed all the cancer .
Coincidentally I’m sitting outside The Wellington Hospital in St Johns Wood waiting to go in for my three month CT scan . Fingers crossed 🤞
I had the same conversation with my surgeon, he said he was confident he’d got it all, so they gave me the option of doing it or not, I chose to. Fingers crossed beds, best of luck, my next scan is 17/9
@Bedsaddick Have you started chemo yet? What sort are you having and if you've started how is it going?
I’m not having Chemo now . The Oncologist said that the the Sarcoma Tumor was so rare that mopping any cells up that may be left behind wouldn’t work. The surgeon was confident that he’d removed all the cancer .
Coincidentally I’m sitting outside The Wellington Hospital in St Johns Wood waiting to go in for my three month CT scan . Fingers crossed 🤞
I had the same conversation with my surgeon, he said he was confident he’d got it all, so they gave me the option of doing it or not, I chose to. Fingers crossed beds, best of luck, my next scan is 17/9
I would have done the same thing but I didn’t have the option .
@Bedsaddick Have you started chemo yet? What sort are you having and if you've started how is it going?
I’m not having Chemo now . The Oncologist said that the the Sarcoma Tumor was so rare that mopping any cells up that may be left behind wouldn’t work. The surgeon was confident that he’d removed all the cancer .
Coincidentally I’m sitting outside The Wellington Hospital in St Johns Wood waiting to go in for my three month CT scan . Fingers crossed 🤞
My mums been having chemo for about the last 4 years, the gap each 'off' periods is shrinking each time... such so that she's had around 30 chemo sessions within the last calender year and managed just 4 months from Nov 2021- Feb 2022 without needed her weekly trips to MV.
This last lot started in Feb and finished late July, she completed 17 out of 18 visits which is heroic by my standards. Roughly a week after her final blast she had a mini stroke so had some scans and they found something on her brain.
Today we discovered that her cancer has infact spread to her brain from her stomach and is the probably cause of the stroke.... also the chemo stopped working around the session 12 mark.
So now it's pills for the stomach and some new tech for the brain.
Fingers crossed this works, as 2 years ago my nans lung cancer spread to her brain and she was dead within 2 months.of the original diagnosis.
Comments
Absolutely made up for him we are and he's currently away sunning himself, no doubt with beers in hand and a liberal application of baby oil all over! 🤣
Mind you, he knows I've still got my eye on his trainer collection ........
All the best mate!
Stay strong, Ian and remember we're all here for you if you need us.
Keep strong and positive
The long term benefits are anticipated to be similar although it is hoped the intravenus has side effects for less time during the treatment (as you don't have it so often).
My mind keeps coming back to word trial on the intravenus drug though which leans me towards the proven tablets.
The other thing is if I chose the intravenus method, I would only have a 50% chance of getting the new drug (and not know) as it's a trial. I have a week or two to make up my mind so will do some more digging and asking.
As this trial is at Medway you may not be offered this intravenus drug (although I believe there are others).
I will be very interested to hear back after you have had your appointment and what they recommend fo you. Good luck
Fingers crossed beds, best of luck, my next scan is 17/9
This last lot started in Feb and finished late July, she completed 17 out of 18 visits which is heroic by my standards. Roughly a week after her final blast she had a mini stroke so had some scans and they found something on her brain.
Today we discovered that her cancer has infact spread to her brain from her stomach and is the probably cause of the stroke.... also the chemo stopped working around the session 12 mark.
So now it's pills for the stomach and some new tech for the brain.
Fingers crossed this works, as 2 years ago my nans lung cancer spread to her brain and she was dead within 2 months.of the original diagnosis.