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UNICORN212's Photo UNICORN212 Posts: 13,156
9/19/14 11:34 P

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Sue,

I totally understand about being there. My husband had Burkitt Lymphoma - a fast growing progressive lymphoma. They suspected it 6/24, biopsied lymph nodes 6/27, removed some 7/12, installed a port 7/26 and admitted him for 17 days on 8/1. He did a chemo regimen for I think 11 days, spent 6 recuperating and was released 8/18. A week later he was back in for round 2, out for a week and then back in for round 3. It was a roller coaster ride. I was there everyday even when he was so bad during the third round that he just lay in the bed with his eyes closed. He made it thru, and though there are some differences (ie less tolerant, food tastes changed, etc) he is clear of cancer and doing well. He still has some muscle to regain, but that comes slower at 56. I hope to have him for many years to come!

I hope your husband's new regimen does the trick and wipes out the cancer. He sounds like he has gone thru too much already! Remember to take care of yourself so you can take care of him. If you watch TV, or are standing in the kitchen waiting for water to boil, walk in place or do knee raises. Leave dumb bells in strategic places (I have 3 pair in front of the TV and 1 pair in the kitchen). Do stairs while waiting for him to return from his tests & procedures. Keep veggies and fruits handy so they are easier to grab. Try to plan ahead.

Let us know how we can help!

~Nancy


"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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TAPETUM's Photo TAPETUM Posts: 299
9/19/14 11:22 P

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Thank you for the update!

I understand fully not wanting to be away from him. For the first several months after Rob's diagnosis and surgery, you couldn't peel me away from his side. We're both in a choir (he's a bass and I'm a soprano), and one of the other singers commented that even though we were on opposite sides of the room, we were obviously completely aware of each other at all times.

You guys have been through a lot! Frank's poor digestive tract! Ostomy bags can be a bear, but they do get easier with time and experience (a dear friend has had one for 30 years, and by now, nobody knows if she doesn't want them to). Hugs and prayers that the chemo effects aren't too much, and that the stupid cancer goes away and stays away.

-Cindy

In the end, only kindness matters. - Jewel


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UUSUZANNE's Photo UUSUZANNE SparkPoints: (78,460)
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9/19/14 10:43 P

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I posted a couple of months ago and haven't posted since; thanks to Tapetum for the reminder!

My husband Frank was first diagnosed with colon and small intestine cancer in November of 2012. He had two tumors wrapped around each other, as well as small metastases near his bowel and on the outer surface of his bladder. He also had 13 lymph nodes removed, two of which were positive. All visible cancer was removed during surgery; since it had started to spread he was stage 4. He had twelve cycles of chemo - Folfiri and Erbitux, which is pretty standard for colon cancer - ending in June of 2013. The cancer was found originally because he had an intestinal blockage; he wasn't completely blocked but could only eat very little, and was in a lot of pain.

In addition to the cancer, they also discovered during that surgery that he has Crohn's disease (some of his small intestine had to be removed because of it); he also has celiac disease (which was probably masking the Crohn's symptoms). So he's been following up with both the oncologist and the gastroenterologist. He had PET scans in June and December of last year, and a colonoscopy in December as well. The colonoscopy showed nothing in his colon, but some ulceration in his small intestine, probably from the Crohn's.

He was starting to have some symptoms this spring, which we thought was the Crohn's; he was trying to figure out what to eat that wouldn't give him pain. He had a CT scan in June to follow up on the cancer, and a colonoscopy at the end of the month as well. The CT scan showed some swollen lymph glands, so they immediately did a PET scan, which showed activity in those lymph glands as well as at the site of the original surgery in his colon (he had two resections the first time but only the colon site seems active now).

The colonoscopy was scheduled 10 days after the PET scan (June 26, to be precise), and the gastroenterologist wanted to do an endoscopy as well. He was able to do the endoscopy, but not the colonoscopy; Frank had a blockage (not completely blocked but almost). He took some biopsies, which came back negative, but did not think he was able to reach the site where it looked like the cancer had recurred.

Meanwhile, Frank had taken in all this colonoscopy prep, and due to the blockage it couldn't really get out very well; after the procedure he was in great pain, and was very sick. They tried to stabilize him and couldn't, so wound up transferring him to the hospital. He was there for two days; they sent him home on a liquid diet and scheduled a loop colostomy for July 8.

The purpose of the colostomy was to bypass the blockage so Frank could eat; the cancer did not look very localized on the PET scan so couldn't really be dealt with surgically. The surgeon was going to try to get some biopsies, but when she opened him up she found a lot of adhesions and very delicate tissue, and was not able to biopsy anything.

Frank was in the hospital for 18 days; it took his digestive system (which by now has had an awful lot of things done to it!) that long to get going again after surgery. He absolutely hates the ostomy bag, and is still having a lot of trouble managing it (can't get the bags to not leak, and so on). They started him on chemo on August 19; this time it is Folfox and Avastin, although they didn't start the Avastin until his third chemo cycle, since they wanted to be sure he was completely healed from the surgery.

So now he is in that stage where he is mostly recovered from the surgery, and the chemo hasn't started to beat him up too badly yet. He does have a lot of cold sensitivity and neuropathy from the oxaliplatin (the "ox" part of Folfox), which is causing him some distress, and of course he is trying to deal with the ostomy.

I have gone to all his appointments with him; when he's in the hospital I stay with him. (I retired a couple of years ago). Not being a martyr or anything; I just don't want to not be with him (if that makes sense!). He should be in chemo through early January. We are hoping this knocks the cancer out once and for all, although we realize that the chances are that it will come back again. We are just taking one day at a time right now.

So my diet and exercise are a mess right now; I was starting to lose, finally, but between hospital stays, complicated schedules, and general stress I have been eating like crazy and not exercising nearly enough. I haven't weighed myself in three weeks, because I really just don't want to know.

I do have a Caring Bridge page set up for Frank, and all of you are more than welcome to visit; you will need a Caring Bridge account (which is free). His page is

www.caringbridge.org/visit/frankobarski

Thanks for listening!!

Edited by: UUSUZANNE at: 9/19/2014 (22:44)
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