Please help

150amanda

Hello All,

 

I'm here due to my 38 year old sister. She was diagnosed with stage III, a fistula, and a bowel obstruction in early September. Prior to diagnosis, she weighed 115...now she weighs 82. She lost the majority of her weight prior to her diagnosis; however, since she still has the partial obstruction, she is losing more. So far, she was treated with Folfox and 5FU. They wanted to do 28 weeks of radiation. However, since they don't want to do surgery until she completed some radiation. They have decided to follow the European Protocol, with 5 days of intense radiation, small break, then surgery. My anxiety has recently gotten the best of me. Any feedback will be greatly appreciated!

JanJan63

I'm not familiar with the

I'm not familiar with the course of treatment they want to go with but I assume it's a good option. All cases are different so what works for many people may not work for one. I know that with my colon cancer they chose to do radiation and chemo before surgery in the hope that they would shrink the tumour so there would be less to remove as they have to take out a margin around the area the tumour is located in. So I didn't have the surgery until 5 months after diagnosis and after the radiation and chemo.

Is the bowel obstruction from the tumour? If it's gone on that long I'm surprised they haven't done surgery to deal with that. I know when I get a partial obstruction I get so sick I can hardly eat or drink anything and lose weight every time. And I spend most of the time in bed just so sick and miserable I can hardly function. Then the blockage passes and I'm back to normal. My surgeon chose to give me an illeostomy several months before the surgery because he was concerned the colon would be completely blocked before the surgery if he didn't. For me, I've always had IBS and had very liquid output so the large tumour hadn't blocked me up yet. But for someone who has normal output I'd think it would be pretty unpleasant.

I'm not sure I'd be very concerned about your sister's weight loss. I doubt it's a sign of the cancer but is a sign of how crappy she feels and she'll feel a lot better once they get things sorted out. I'm not familiar with the European Protocal, I'm sorry. I just think that you should try not to worry. From what I understand weight loss is something that shows up in the latter stages of cancer's takeover of the body but when it's early on like this it's not from the cancer itself, it's from the side effects of it and how it makes her feel, it's not indicative of how bad she is. I hope that makes sense. I'm not great at passing on what I'm thinking without rambling. Some people on here are much better at it.

Oh, I was stage three as well. If she were really badly off they'd say something. She'd have been told. It's just past three years since my diagnosis and I feel fine. I expect to be around for quite a while longer. I'm sending you positive thoughts and I hope you can help your sister feel positive as well. It's so important.

Jan

beaumontdave

Nothing comes immediately to

Nothing comes immediately to mind. Has your sister tried the "Ensure" type drinks. I've had a few and they seem like something you can get down when nothing else will. With any luck, the radiation should start shrinking the blockage, allowing more foods to pass. This is the start of a long "journey" so know that she and you will acclimate to the change, to a degree that allows you to deal with things as they come up. Let us know how she's doing...............................Dave

traci43

second opinion?

Has your sister thought about a 2nd opinion?  Losing that much weight is not good and the doctors should be worried about that.  Not sure I would want to wait for radiation before surgery at this point.  She needs enough strength to recover from surgery, let alone radiation.  Best wishes, Traci

150amanda

JanJan63 said:

I'm not familiar with the

I'm not familiar with the course of treatment they want to go with but I assume it's a good option. All cases are different so what works for many people may not work for one. I know that with my colon cancer they chose to do radiation and chemo before surgery in the hope that they would shrink the tumour so there would be less to remove as they have to take out a margin around the area the tumour is located in. So I didn't have the surgery until 5 months after diagnosis and after the radiation and chemo.

Is the bowel obstruction from the tumour? If it's gone on that long I'm surprised they haven't done surgery to deal with that. I know when I get a partial obstruction I get so sick I can hardly eat or drink anything and lose weight every time. And I spend most of the time in bed just so sick and miserable I can hardly function. Then the blockage passes and I'm back to normal. My surgeon chose to give me an illeostomy several months before the surgery because he was concerned the colon would be completely blocked before the surgery if he didn't. For me, I've always had IBS and had very liquid output so the large tumour hadn't blocked me up yet. But for someone who has normal output I'd think it would be pretty unpleasant.

I'm not sure I'd be very concerned about your sister's weight loss. I doubt it's a sign of the cancer but is a sign of how crappy she feels and she'll feel a lot better once they get things sorted out. I'm not familiar with the European Protocal, I'm sorry. I just think that you should try not to worry. From what I understand weight loss is something that shows up in the latter stages of cancer's takeover of the body but when it's early on like this it's not from the cancer itself, it's from the side effects of it and how it makes her feel, it's not indicative of how bad she is. I hope that makes sense. I'm not great at passing on what I'm thinking without rambling. Some people on here are much better at it.

Oh, I was stage three as well. If she were really badly off they'd say something. She'd have been told. It's just past three years since my diagnosis and I feel fine. I expect to be around for quite a while longer. I'm sending you positive thoughts and I hope you can help your sister feel positive as well. It's so important.

Jan

Thank you for always

Thank you for always responding! Yes, the tumor and fistula are both part of the obstruction. She had an MRI yesterday and should have the results on Monday. We did believe the tumor has shrunk because her CEA has went from 62 to 4.7. I fear that she will be too weak for surgery at the point we finish radiation and with being extremely skinny. 

150amanda

beaumontdave said:

Nothing comes immediately to

Nothing comes immediately to mind. Has your sister tried the "Ensure" type drinks. I've had a few and they seem like something you can get down when nothing else will. With any luck, the radiation should start shrinking the blockage, allowing more foods to pass. This is the start of a long "journey" so know that she and you will acclimate to the change, to a degree that allows you to deal with things as they come up. Let us know how she's doing...............................Dave

Yes she does drink some

Yes she does drink some Ensure. the blockage is making her so sick and full all of the time. She was admitted twice for the obstruction within the last 2 weeks and was unable to eat for most of that. They have her doing the feeding tube at night as well as eating what little she can.

150amanda

traci43 said:

second opinion?

Has your sister thought about a 2nd opinion?  Losing that much weight is not good and the doctors should be worried about that.  Not sure I would want to wait for radiation before surgery at this point.  She needs enough strength to recover from surgery, let alone radiation.  Best wishes, Traci

Yes. They are our second

Yes. They are our second opinion. The first hospital wanted to repair the fistula and blockage, then follow with xeloda and radiation, then tumor removal. This hospital recommended aggressive chemo and radiation, then complete all surgeries at once. Now we are here..the doctors are concerned about her weight. At first, she was getting better with every treatment and gained 10 lbs. then she was admitted for the blockage twice within the last few weeks and no able to eat for most of that. Then, she lost even more. They now have her Bowels moving more and a feeding tube at night along with her eating what she can. 

JanJan63

I feel so bad for her. Like I

I feel so bad for her. Like I said, when I've had a blockage- and it was just a prtial one- I've been so sick from it. It made me nauseus (sp?), weak, dehydrated, cramped up, just miserable. Last time I missed a week and a half of work and could barely get out of bed during it all and slept something like 12 hours a day. I was also on IV fluids because of the dehydration. I tried drinking ginger ale for the nausea but it didn't help. I was starting to worry that it wasn't going to pass or that it was how I was going to feel forever. It was horrible.

Yes, they ought to do something to get some weight on her and get her strength back. Please keep us up to date on what's happening. My fingers are crossed for her.

Jan