Thoughts after Dame Deborah James

[peghip]

I was diagnosed in 2016 with CLL I had 17P deletion and 11q. Dame Deborah James was diagnosed with stage 4 bowel cancer the same year, today the news is full of memories of her life after her death yesterday. When I was diagnosed my son told my daughter I had 30 months. That was the historical data at that time. New treatments were coming online but no indication of long term benefits particularly for 17p, but I looked at it as glass half full, I needed treatment a year after diagnosis. Some 6 years later I'm still annoying to others and enjoying life to the full , in remission.

Hearing all the news about Dame Deborah is hard she was diagnosed same time as me and full of life. Cancer takes many forms and is unfair. Thinking positively doesn't guarantee we'll survive our cancer but it does mean we will enjoy our life.

[Belfastbees]

Well put. There are many forms of cancer, as we all know, and perhaps blood cancer is not so bad. I'm 2.5 yrs into w+w and don't think much about it at all. I've managed to put it to the back of my mind but grateful for the focus it brought to my door when I thought it was a death sentence. I know there are many turns it can take and nothing is promised so take the good out of life while you can. It's a lesson I've learned for sure.

[Newdawn Administrator]

She was a truly inspirational lady with a zest for life that shone through even in her weakest moments. All cancers have degrees of severity and their own individual profile. Thankfully, many bowel cancer patients fare much better than Dame Deborah even at Stage 3 and her efforts have raised awareness. Her own obituary is so true and profound;

And a few final things from Deborah…’’find a life worth enjoying…take risks…love deeply…have no regrets and always, always have rebellious hope. And finally, check your poo – it could just save your life.’’

Newdawn

[CycleWonder]

Colon/bowel cancer is a hard cancer to get past. My brother-in-law managed but it was not easy. He was in a group of 5 that went through chemo together. He was the only one who finished and the only one to survive. He continued to work full-time and finished an online law degree and passed the bar. Maybe that’s why - he didn’t allow himself enough time to think about it.

[bennevisplace]

My thoughts go back to the two people I lost to colon cancer. Both diagnosed too late, despite doing the regulation screening provided in the healthcare systems of the UK and Australia respectively, based on fecal occult blood testing. In terms of detecting bowel cancer this is better than nothing; in terms of reducing mortality from bowel cancer I'm not sure it's even that good.

Because I have a family history of colon cancer (though it seems to be expressed only in female members on my father's side), and also CLL, I managed to win an argument with a consultant to have a colonoscopy on the NHS. This revealed polyps, setting in place a programme of regular follow up colonoscopies. The next such was supposed to be one year later, but for no reason was rescheduled to five years. That anniversary passed six months ago. Oh, sorry, Covid. Reset the clocks.

[bennevisplace]

An extract from cancer.gov/types/colorectal...

What new tests are being developed for colorectal cancer screening?

One new approach to colorectal cancer screening is to look for cells released by colorectal polyps and tumors into the bloodstream (24). These so-called circulating tumor cells (CTCs) are rare, however. Researchers have developed an ultrasensitive antibody-linked CTC detection technology to capture colorectal epithelial cells associated with colorectal tumors and adenomas in blood samples (25). In a proof-of-concept study, this blood-based CTC test was able to distinguish between patients with colorectal adenomas or cancer and people without cancer (26).

Researchers have also identified small molecules, called metabolites, in urine that may signal the presence of colorectal polyps and tumors (27, 28). In a clinical study, a metabolomic-based urine test was better able to identify patients with adenomas than stool-based tests (29).

Researchers are also trying to improve the sensitivity of stool-based screening for detecting advanced adenomatous polyps, which can potentially become colorectal cancer, by testing for the presence of multiple biomarkers. For example, measuring three protein biomarkers in stool—hemoglobin, calprotectin, and serpin family F member 2—improved the ability of FIT to detect advanced lesions (including colorectal cancer) by 35% without reducing its specificity (30).

[Shepherd777]

My wife was diagnosed in 2015 and told she had 17p Tp53. They gave her two years and here we are after Venetoclax was approved passing that mark by 5 years in two weeks.

[peghip in reply to Shepherd777]

My oncologist referred to Venetoclax as the Ferrari. When I was diagnosed he said there were options what a difference a year can make.Did your wife continue taking Venetoclax after 2 years?

Take care I have had marvelous support from my wife, I'm sure you are supportive of your wife. People forget that it's just as hard for partners of those with the diagnosis.

[Shepherd777 in reply to peghip]

My wife stopped venetoclax after a year as she was diagnosed as in clinical remission. She had a 3 year 5 month plus "venetoclax Vacation". Last week she started back on Calquence.

[spi3 in reply to Shepherd777]

That's so encouraging- my husband was just diagnosed in March (tp53 and 17p) and just 2 weeks ago stated venetoclax - does your wife still take venetoclax or did she only take it for a limited time? I read some folks (with tp53 and 17p) only go into remission with venetoclax for a 1 and a half - any input is so appreciated! I'm so glad of your post too

[Shepherd777 in reply to spi3]

My wife was on Venetoclax just shy of a year and then went off it and took a "venetoclax vacation" for 3 years and 5 months and 22 days before she began treatment again about ten days ago. I have sent you some additional information in your message box.

[spi3 in reply to Shepherd777]

Thank you

[LeoPa]

Exactly. We know life on Earth doesn't last forever but we sure can enjoy it while it lasts.

[Hidden]

Well said!