Claudine wrote:I am so very sorry to read this, Lovelife. Chemo for life isn't a very pleasant prospect, but I guess it all depends on how well you tolerate it? A colleague of mine is starting her 6th year (small bowel cancer with an inoperable met near her pelvis). She gets an infusion every month and is able to maintain great QoL (works fulls time, etc). There's so much research going on for mCRC right now that one can always hope that a better cure will eventually be found - hang in there!
Claudine
lovelife789 wrote:Got the PET report today, after it being clear for 10 months, it came back to hit me at liver 1.1cmx 1.1cm, one suspicious paraaortic LN and one suspicious near iliac and one suspicious one near thorax....
… I'm worried about Paraaortic LN, I saw someone had it removed before but did it help?
The strange part is my CEA has always been a great indicator....in my last lung met, it did trend upwards just not exceeding the >5 range. This time it actually trend down. 1.1>1.0>0.9. did anyone's CEA was a good indicator but was not working all of a sudden?
Chemo for life isn't good, but I will take it if that's my only option.
jep wrote:Hi Lovelife,
My husband got similar news in October....he also has paraaortic nodes...1 was biopsied and is cancerous....he did a second round of chemo without any real change....his surgeon and oncologist (and the tumor board) all agree that surgery is his best option....that will happen in mid August and we're hoping to have nothing but positive news to share with you and everyone here!! He has to finish his 6 weeks of xeloda and radiation (for a small spot on his colon), rest up for six weeks and then head in for a second surgery...has your doc mentioned doing a biopsy? Praying for you and everyone here!
jep
Brearmstrong wrote:Hi there. Sorry to hear your news but wanted to reach out. I am one of those that had high SUV uptake in para aortic nodes and had them removed. I have been NED since last May but also on chemo for life. It is doable!
lovelife789 wrote:jep wrote:Hi Lovelife,
My husband got similar news in October....he also has paraaortic nodes...1 was biopsied and is cancerous....he did a second round of chemo without any real change....his surgeon and oncologist (and the tumor board) all agree that surgery is his best option....that will happen in mid August and we're hoping to have nothing but positive news to share with you and everyone here!! He has to finish his 6 weeks of xeloda and radiation (for a small spot on his colon), rest up for six weeks and then head in for a second surgery...has your doc mentioned doing a biopsy? Praying for you and everyone here!
jep
I'm praying for your husband too. These lymph nodes are so annoying!
Did your husband's scan reveal the node's exact location and how close they are to the main artery? Mine was blurry, so it's not easy to tell until they attempt to remove it. I will commence folfiri tommorrow with Avastin, not sure about whether I will respond to it. I'm amazed your husband gets to know the chemo wasn't working only after 2 rounds, I will only know when I do my next scan in Aug.
I pray for the surgery of your husband!
rp1954 wrote:We had later events that appeared to shift the cancer markers' degree of response amongst CEA, CA199 and AFP, perhaps individual lesions shedding different levels of markers.
Also the other blood chemistry and extra but common labs can contain important hints and useful information if inflammation and chemo damage can be kept under control. I've posted much about our basic bloodwork goals and experience.
lovelife789 wrote:… may I ask what this part actually means?rp1954 wrote:We had later events that appeared to shift the cancer markers' degree of response amongst CEA, CA199 and AFP, perhaps individual lesions shedding different levels of markers.
Also the other blood chemistry and extra but common labs can contain important hints and useful information if inflammation and chemo damage can be kept under control. I've posted much about our basic bloodwork goals and experience.
You wife can stay off chemo for the past year is great!!!
1) So I got my PET scan report just last week, the prior one in Feb was all clear, so for anything at all, everything happened in these 3 months. This one in May shows several spots with low uptake. The one near Thorax was the lowest, my Onc said probably reactive and false positive, not to worry too much.
2) The L paraaortic LN SUV is up to 8 . No measurement. No enlargement confirmed .
3) L Common iliac LN uptake around low 4 too. No measurement. No enlargement confirmed.
4) The one in liver was inconclusive without any measurable lesion, even on the scan, it only shows a higher density foggy area, not a solid thing. Uptake was at low 4...
I'm currently on Vitamin D, Vitamin B complex, Curcumin, Reservatrol, Tagamet (800mg/day), Vitamin C, Milk Thistle, baby aspirin and Probiotic. I certainly would consult my doctor but at a glance, am I missing anything?
Eternal optimist wrote:I had PALN mets when was diagnosed, and 2 PALN recurrences. The first were surgically removed, the second treated with radiotherapy and the third shrunk away within my first 3 months of chemo for life. They stopped showing up on scans 18 months ago, and I have had no evidence of visible disease for over a year and am now on maintenance chemotherapy. PALN mets can be like the advance guard of a recurrence, it's not uncommon for people to get organ mets diagnosed a few months after Para aortic mets are discovered. This is why you should have chemo first before any targeted treatment.
My understanding is that it is quite common for lymph node mets to not affect CEA, even if subsequent organ mets do then cause raised markers. Also your tumour could have mutated to stop expressing CEA, this would also be a sudden change in the readings compared to previous tumours.
The chemo has worked really for me this time, and I know others who have also got rid of PALN mets through chemo. I hope you get the same result.
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