For Stage III's: NED for how long now?

[shinny]

Hi all,

I just wanted to give an update on my Mam as I know I found it very helpful to see those in the same category as her doing well. She was Stage IIIc.

She will be 3 years NED from Monday (her surgery day!). It was her birthday last weekend and she turned 73.

She was diagnosed at 69 and turned 70 the week before her surgery. All of her scans have been clear and all of her blood tests have been good. Her oncologist only really looks at CEA for tumour markers, however, I get the CA 19-9 added (via her GP) as a result of being a member of this forum (very valuable information!!). That's always been normal, thankfully. We also keep a check on her Vitamin D, her CRP (C-reactive protein), and all of the standard blood tests.

We just had her latest scan in March, right before lockdown here in Ireland. The oncologist gave her the result over the phone (all good thankfully). Appts are a bit all over the place right now with Covid 19 and the fact that our private hospitals (the one my Mam attends is a private hospital) were made public by the government, to deal with the crisis.

Her details:

Dx: 4th May 17
Age diagnosed: 69 (73 now)
Stage: T4/N2/M0 (Stage IIIc) 5/12 nodes positive. Right hemicolectomy surgery 26th May 2017. Lap/Robotic surgery.
Chemo Started 5th July 2017: FOLFOX & Oxaliplatin, 12 rounds (reduced by 20% at round 5)

[NHMike]

That's excellent news. I think that hospitals are opening up for more services in a lot of places as COVID numbers decline. I hope that COVID numbers continue to decline to reduce the stress on cancer patients and survivors.

[shinny]

Yes, fingers crossed they keep on the downward trend. We had our first "0 new deaths" today in Ireland since March 21st. A great milestone to pass. I hope it stays that way. Our new cases are much lower too and we are gradually opening up more.

[Basil]

I’ve got my three year scans coming in early July. Haven’t thought about cancer too much in a while (a great thing) but you everyone here knows how scan time goes. I was diagnosed March 2017, had a path complete response, surgery, and my last all clear (blood and physical exam only) last December. I’m told if all clear this time chances of a recurrence (after three years) start taking a major nosedive. I feel like I’m on mile 20 of a marathon and just want to power through until the five year mark.

[shinny]

Hi Basil, I know what you mean. My Mam is the same, she doesn't really think about it until scan time, and then of course you get that normal anxiety and apprehension.

Good luck for July! My Mam will have a colonoscopy in September and then probably won't have another scan until the end of the year.

[horizon]

I’ve got my three year scans coming in early July. Haven’t thought about cancer too much in a while (a great thing) but you everyone here knows how scan time goes. I was diagnosed March 2017, had a path complete response, surgery, and my last all clear (blood and physical exam only) last December. I’m told if all clear this time chances of a recurrence (after three years) start taking a major nosedive. I feel like I’m on mile 20 of a marathon and just want to power through until the five year mark.

Sending you good luck for your results!

[wwroam]

13 years today since my resection and still free of CC.
Unfortunately my NSCLC is a roller coaster. I've had chemo, chemo+ radiation and was cancer free for about 16 months. Rediagnosed as Stage 4 last year, Alimta+Carboplatin but had to have a break with very low haemoglobin. Restarted with opdivo which was ineffective and am currently on Taxol + Carboplatin which historically been quite effective. Bought a new BMW M2 Competition in late Feb so I am not going quietly. Out with a bang not a whimper.

[Lee]

Hi wwroam,

Congratulation on the 13 year mark, sorry for your other medical issues.

Well I celebrated my 16 year mark a few months back. Still NED!! Finally updated my signature line. Glad to be here, butt this virus scares me. My husband has been working from home for sometime now. Don't think that is going to change anytime soon.

I had a cancer scare this past fall. I had radiation back in 2004 and I know this puts me at a higher risk for bladder cancer. Anyway, I started passing blood. When I told my husband, his first words were avoid Dr. Google. I told him I have every intention of avoiding it until I get a diagnoses. Saw my PCP, yep you have blood in your urine, sent me off to see the Urologist.

Urologist set up a Cat scan. Bladder looks good, but radiologist is picking up something on my left kidney. Next they schedule an MRI, yep there is something there. During the mean time, I see my GYN and tell her what is going on. She says follow up with the Urologist, butt don't be surprised if the bleeding is coming from your vagina. As she put it, she has never seen such bad scar tissue and damage that she see in my vagina. Radiation damage

I had surgery where the Urologist went into my bladder, up a tube (sorry remember the name) and into my kidney where he took a few biopsy. The good news no cancer, still not 100 sure what it was. I will see the Urologist next month where they will run a few test to make sure I have healed up in that area. I will ask him. Glad to still be cancer free.

For those just starting, know that many people are beating this disease. I am one of them. So don't give up the hope.

Lee

[justin case]

Hi wwroam,

Congratulation on the 13 year mark, sorry for your other medical issues.

Well I celebrated my 16 year mark a few months back. Still NED!! Finally updated my signature line. Glad to be here, butt this virus scares me. My husband has been working from home for sometime now. Don't think that is going to change anytime soon.

I had a cancer scare this past fall. I had radiation back in 2004 and I know this puts me at a higher risk for bladder cancer. Anyway, I started passing blood. When I told my husband, his first words were avoid Dr. Google. I told him I have every intention of avoiding it until I get a diagnoses. Saw my PCP, yep you have blood in your urine, sent me off to see the Urologist.

Urologist set up a Cat scan. Bladder looks good, but radiologist is picking up something on my left kidney. Next they schedule an MRI, yep there is something there. During the mean time, I see my GYN and tell her what is going on. She says follow up with the Urologist, butt don't be surprised if the bleeding is coming from your vagina. As she put it, she has never seen such bad scar tissue and damage that she see in my vagina. Radiation damage

I had surgery where the Urologist went into my bladder, up a tube (sorry remember the name) and into my kidney where he took a few biopsy. The good news no cancer, still not 100 sure what it was. I will see the Urologist next month where they will run a few test to make sure I have healed up in that area. I will ask him. Glad to still be cancer free.

For those just starting, know that many people are beating this disease. I am one of them. So don't give up the hope.

Lee

Radiation damage is something to behold, not. It has altered my existence for 7 years now. I'm still kicking !

[Lee]

Radiation damage is something to behold, not. It has altered my existence for 7 years now. I'm still kicking !

Good to see your post. Be safe, be healthy.

Lee

[wwroam]

Had a CT on Monday and had my oncologist appointment on Wed.; Evident tumour shrinkage. Even at 66% dosage the results are favourable and my haemoglobin levels are fairly steady at 93g/L. Looking good.
Just keep plugging away.

[NHMike]

Had a CT on Monday and had my oncologist appointment on Wed.; Evident tumour shrinkage. Even at 66% dosage the results are favourable and my haemoglobin levels are fairly steady at 93g/L. Looking good.
Just keep plugging away.

Very nice report.

[Monique]

In 2006, I was diagnosed with what is now considered stage IIIC colon cancer. I've been NED for 14 years.

[CRguy]

It is great to see you post my friend
Thank you for stopping by today with your positive message !

Cheers and Harmony to you
CRguy

[crikklekay]

My husband’s second scan is coming up next month, if it’s clear he will be at 2 years NED! I’m a nervous wreck over it, I know 2 years is an important milestone. I guess technically he has had no signs of disease since surgery early 2018 but he wasn’t given the title NED until after his clear scan the summer of 2018. It gives me hope seeing people with NED in the double digits! Please send well wishes and good luck our way