ANDRETEXAS wrote:From my experience, I think the sooner a plan is established the better. When healed, I started chemo as soon as I could after surgery.
horizon wrote:I was stage 3 and went through resection and chemo also. Every single time I looked up charts with any statistics (survival, recurrence, etc) it only accomplished one thing: causing me tremendous worry and anguish. I got to the point where I decided I was going to deal with anything bad that came up but stop trying to predict what would/wouldn't happen.
You also have to remember that a lot of the statistics can be skewed because so many CC patients are much older.
Sending good vibes to you both.
LivinginHope wrote:Thank you, totally sympathise - the stats create so much anxiety, even when they're pretty good I convince myself he'll fall into the worst case!
100%, that's so true, all stats and research papers are often about people older than my husband!
horizon wrote:LivinginHope wrote:Thank you, totally sympathise - the stats create so much anxiety, even when they're pretty good I convince myself he'll fall into the worst case!
100%, that's so true, all stats and research papers are often about people older than my husband!
One of the times I was feeling sorry for myself and commented on how everyone else in the waiting room looked like they could be my grandparents. A nurse pointed out to me that I was able to bounce back much better than them from surgery because of that fact. I never forgot that.
LivinginHope wrote:... we have a Macmillan nurse ...
Plan your questions
"Appointments and other chances to speak with your healthcare team can be short. It is good to be prepared, and we have information to help you do that. It may help to write your questions before your appointment. Keep a notebook handy and write things as you think of them. Or you can order a free Macmillan Organiser.
You can make notes during appointments in a notebook or the Macmillan Organiser. This may help you to remember what is said. You can also get copies of any documents your doctor or healthcare team send to your GP. These might include information about your test results or treatment. Some healthcare professionals may be happy for you to record consultations using a dictaphone or smartphone. You should ask their permission first..."
https://www.macmillan.org.uk/cancer-information-and-support/treatment/preparing-for-treatment/talking-to-your-healthcare-team-about-treatment
LivinginHope wrote:Honestly that's so true. In the UK, we have a Macmillan nurse (a cancer charity that provides specialist support to cancer patients and families, supports us through the process)... She has said that younger people often tolerate treatment (surgery and chemo) better than older people, so we are being positive.
Just impossible to know how things are going to go before Chemo starts
horizon wrote:LivinginHope wrote:Honestly that's so true. In the UK, we have a Macmillan nurse (a cancer charity that provides specialist support to cancer patients and families, supports us through the process)... She has said that younger people often tolerate treatment (surgery and chemo) better than older people, so we are being positive.
Just impossible to know how things are going to go before Chemo starts
I was more scared of the chemo than I was of the surgery because it was such an unknown. Everyone reacts differently but I handled it pretty well. I had several frustrating side effects, but I was able to keep going to work and the gym (with breaks during infusion time of course). If he's debating whether or not to get a port I could dig up the thread where the forum talked me into one. I'm glad they did.
LivinginHope wrote:Totally get that, we feel the same. Surgery is one thing but once it's done (in most cases and after recovery) it's done. Chemo is likely to be 6 months of unknowns and it won't end after 6m for us... As we'll then have to wait another 6m to see whether he's fertile or not. In 1 way I feel like the hard part (diagnosis & surgery) is done but then I remember we basically have 1yr of unknowns and it's so daunting and sad.
Thank you though, I'm hoping he'll handle it as you did. Then he can keep working (from home) and get back to the gym and have as much normality as possible.
Not sure what chemo he'll be having yet...would they recommend a port if he's on CAPOX... The infusion is for 2-3hrs every 3 wks. I understand FOLFOX has longer infusions? Thank you though!
horizon wrote:
I had the choice between XELOX and FOLFOX. I went with XELOX. That was an infusion (several hours) of Oxi every three weeks. With FOLFOX you also have to wear a pump for a set amount of time and a port really helps with that.
The unknowns and waiting is awful and I really feel for you both. For the longest time it consumed all my thoughts. Things got much better for me and I hope they do for him also.
Green Tea wrote:Here are the UK guidelines for FOLFOX and XELOX
(FOLFOX) Folinic acid, fluorouracil and oxaliplatin
https://about-cancer.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/folfox
(XELOX/CAPEOX) Capecitabine and oxaliplatin
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/oxaliplatin-capecitabine
Here are the UK consent forms for FOLFOX and XELOX
PATIENT AGREEMENT TO SYSTEMIC ANTI- CANCER THERAPY: Oxaliplatin- Fluorouracil (FOLFOX)
https://www.cancerresearchuk.org/sites/default/files/colorectal_oxaliplatin-fluorouracil_folfox_v1.pdf
PATIENT AGREEMENT TO SYSTEMIC ANTI- CANCER THERAPY: Oxaliplatin- Capecitabine (CAPOX)
https://www.cancerresearchuk.org/sites/default/files/colorectal_oxaliplatin-capecitabine_capox_v2.pdf
boxhill wrote:I personally would recommend a port for ANY chemo regime, especially one that involves oxaliplatin. Apparently giving it by IV does a number on one's veins in several ways. Once the port is in you can just about forget about it. No pain, does not hamper movement or activities, etc. Which side to put it in is usually determined by which shoulder is most often crossed by the seatbelt, which depends on whether the patient is usually the driver and of course whether you drive on the left or the right. Although mine is on the left, because I usually drive, I have no discomfort at all when I'm the passenger.
ETA to correct: mine was on the right.
LivinginHope wrote:...But I'm also ridiculously anxious about what side effects he may get, how bad they'll be, how and if I can help...
"An ounce of prevention is worth a pound of cure"
English Proverb
"A stitch in time saves nine"
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