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Re: New on the forum
Posted: Mon Feb 12, 2018 2:05 pm
by Caat55
Hi Claudia,
How is it at home? Managing all the new tubs, bags, eating and staying hydrated? Thinking about you from half a world away.
Susan
Re: New on the forum
Posted: Mon Feb 12, 2018 2:17 pm
by Atoq
Hi! Thanks for asking, I am fine, eating more ore less everything (I avoid meat and diary products) without problems, but I try to chew very well.
The new stomy is a bit more demanding because needs to be emptied more often, but compared to the colostomy I had before is not making noises
I drink a lot of ginger tea to stay hydrated and I have started training strength again, I of course avoid sit ups and heavy lifting. I also go for long walks with the dogs but it is quite windy and cold.
Tomorrow I will have a PET scan total body which I did not expect, I guess to evaluate my lung node.
All the best
Claudia
Re: New on the forum
Posted: Wed Feb 14, 2018 12:41 pm
by Caat55
Hope your scan went well today. I am so impressed by your attitude. My friends are bringing me food, lots of casseroles, soups. I am going to avoid the cheese as well, it makes things slow down.
There is a private company here that does the genetic testing, about 400 dollars. I can't decide about doing it. Would I do anything differently?
Susan
Re: New on the forum
Posted: Wed Feb 14, 2018 1:29 pm
by Atoq
Hi! The scan went fine but I don't know when I will get the results, it looks like I am soon having surgery for the lung and I hope this time it will be endoscopic. I guess I will be more informed after the meeting with the surgeon on Friday. I would do the DNA testing mostly for my kids, but it is not urgent.
Claudia
Re: New on the forum
Posted: Wed Feb 14, 2018 1:33 pm
by susie0915
Caat55 wrote:Hope your scan went well today. I am so impressed by your attitude. My friends are bringing me food, lots of casseroles, soups. I am going to avoid the cheese as well, it makes things slow down.
There is a private company here that does the genetic testing, about 400 dollars. I can't decide about doing it. Would I do anything differently?
Susan
I went to see the genetic counselor at my cancer center and was told because no history insurance would not pay for testing. However, they recommended I do the color genetic testing that you can do online. They would do it all from their office or I could do myself online, and have all results sent to them. It's about $250 and they test for many different markers. Might be worth looking into.
Re: New on the forum
Posted: Wed Feb 14, 2018 2:29 pm
by Shana
Atoq wrote:Hi! The scan went fine but I don't know when I will get the results, it looks like I am soon having surgery for the lung and I hope this time it will be endoscopic. I guess I will be more informed after the meeting with the surgeon on Friday. I would do the DNA testing mostly for my kids, but it is not urgent.
Hi Claudia,
I hope that your lung surgery is endoscopic and resolves the problem. You are inspiring and I wish you much success dealing with all of these treatments and surgeries. I had DNA testing last year and they found nothing, tested for 500 mutations. I asked the doctor if that was good or bad news. He said it was good for using EGFR therapy but not good for other immunotherapies. I am MSS which means Opdivo and Keytruda are not effective from what I have read.
I shared the DNA results with my kids but still encourage them to go for early screening when they get older.
Take good care!
Shana
Claudia
Re: New on the forum
Posted: Wed Feb 14, 2018 3:13 pm
by Caat55
Re: New on the forum
Posted: Wed Feb 14, 2018 4:04 pm
by Atoq
Thanks Shana! I hope you can also have surgery soon.
Once I wanted to do the genetic test of 23and me but, being in Norway, I could only get information about genealogy and not health. I wonder if it is possible to do this multiple test for genetic disposition now.
Claudia
Re: New on the forum
Posted: Wed Feb 14, 2018 4:20 pm
by Shana
Atoq wrote:Thanks Shana! I hope you can also have surgery soon.
Once I wanted to do the genetic test of 23and me but, being in Norway, I could only get information about genealogy and not health. I wonder if it is possible to do this multiple test for genetic disposition now.
Claudia
I don't know much about the genetic tests that one can send in. I had mine done at UCSF medical center in San Francisco after I had emergency surgery for my blockage. The insurance approved it so I don't know what criteria was involved. I had a very bad reaction to Folfox which gave me colitis and contributed to the inflammation causing the blockage. I know that they recommended genetic testing to make sure that I didn't carry any genes that would react negatively with Irinotecan. Ironically it didn't even show that I carried the gene which reacted poorly to Folfox... go figure!
I am resigned to living with the colostomy if resection isn't possible but I'd rather have the tumor removed regardless. Cancer free with a colostomy is acceptable, it's all about survival with quality of life.
Thank you for the good wishes
Re: New on the forum
Posted: Wed Feb 14, 2018 5:04 pm
by Atoq
Shana wrote:I am resigned to living with the colostomy if resection isn't possible but I'd rather have the tumor removed regardless. Cancer free with a colostomy is acceptable, it's all about survival with quality of life.
Thank you for the good wishes
I would also sign up for that
I had the colostomy for two months and at the end I totally forgot about it. And tou can even irrigate it and get more control over it.
Claudia
Re: New on the forum
Posted: Wed Feb 14, 2018 5:35 pm
by Shana
The chemo I'm on keeps my colostomy quite active at times so it's hard to ignore but on the bright side I can sleep through the night even with all that activity going on! I never have to worry about finding a bathroom "right now" but of course it would be great to be cancer and "bag" free too!
Even though my tumor is at the splenic juncture on left side, due to the blockage I have a transverse colostomy. This is on the right side so irrigation doesn't work for me, not enough colon to make it worthwhile unfortunately.
Re: New on the forum
Posted: Fri Feb 16, 2018 11:18 am
by Atoq
Today I talked to a surgeon (it is almost never the same), I did not get a copy of the pathology report, because I have to make an official request by snail mail for that. But he told me that I had 10 mm clear margins, 11 of 11 clean lynphonodes and downstaging from T4 to T3a (no tumor invasion in peritoneum or uterus). So no mop up chemo according to Norwegian standards.
But the PET CT scan confirmed cancer in the lung and I have to do a needle biopsy to see if it is metastasis of colon cancer or a new lung cancer, because the treatment is different. So I am celebrating the good news and then make me ready for a new round
Claudia
Re: New on the forum
Posted: Fri Feb 16, 2018 11:29 am
by Caat55
Congrats Claudia on the good news. If you don't have to do mop chemo, when do you get the ileo reversed? Did they give you any information about what's going on with your bladder? I am full of questions. My doctor yesterday was telling us about the differences in treatment in US and Europe, a guess this is one of them.
When is the biopsy scheduled? It's hurry and wait isn't it?
Susan
BTW where in Norway are you? My husband used to live there and we have visited.
Re: New on the forum
Posted: Fri Feb 16, 2018 11:50 am
by Atoq
Caat55 wrote:Congrats Claudia on the good news. If you don't have to do mop chemo, when do you get the ileo reversed? Did they give you any information about what's going on with your bladder? I am full of questions. My doctor yesterday was telling us about the differences in treatment in US and Europe, a guess this is one of them.
When is the biopsy scheduled? It's hurry and wait isn't it?
Susan
BTW where in Norway are you? My husband used to live there and we have visited.
Thanks! The ileo reversal was planned in two months, but will be after the lung operation, I might have to do mop up chemo after that as well, it will depend on the type of tumor or resection margins I guess, but the gastroenterologist said they will need a new meeting with the oncologist to decide that.
The bladder is going better, but I still use a catheter before to go to bed, because the bladder is not totally emptied. The control for that is scheduled in April...
I don’t know when the lung biopsy will be scheduled. I hope soon, but I guess I have to wait for full recovery before a new surgery.
I live in Trondheim, but actually I am Italian
Best
Claudia
Re: New on the forum
Posted: Fri Feb 16, 2018 12:04 pm
by Caat55
Everyone is cautioning about holding off on the reversal until well past mop up chemo due to side effects. If you have to do chemo for the lung maybe wait. The bag I think is easier to manage then a sore bum. The oncologist said the chemo is hard on body, and that is better to have colon rest than work so hard .
Trondheim is beautiful. We stayed there twice.
Susan