One patient with glioblastoma still alive nine years later
by Lisa67 on Thu Jan 08, 2009 12:00 AM
by trehouse60 on Thu Jan 08, 2009 12:00 AM
It's difficult to answer your questions without more information, but generally speaking, no, this is NOT a normal reaction to chemo.
You said she has an infection. The source/location of the infection makes a big difference as to how well she recovers? How is the infection responding to treatment - is it getting better? Does she have a port for chemo and blood draws - is that what got infected? If so, it may need to be removed.
You said she's been in the hospital twice - is she there right now, and if so, are they giving her IV supplementation other than just saline and sugar water - is she getting any hyperalimentation (IV fluids with vitamins and minerals) or any lipids (fats?)
You said she has a feeding tube but not sure how much she is using it. If she's not eating or drinking then the feeding tube HAS to be the major source of nutrition. If it's not, then that may be why she's not recovering well from the chemo and the infection. Now if there is infection at the site of the feeding tube, that can cause serious problems.
Sounds like someone really needs to intervene on this lady's behalf. Ask questions and get them answered, and insist that treatment of both infection and nutrition get stepped up before any type of surgery is considered, unless it is life-threatening NOT to have the surgery.
If she's home, sounds like she could use a LOT of help from home health. If she doesn't have assistance from home health, someone needs to step in and try to get that started for her.
She's home resting now. She was release last Friday from the hosp and starting to feel bad again. I do believe it maybe related to not using the feeding tube. For some reson she's against it. She tells us she's using it now, I'm just not sure. I do know the iv fluids consist of vitamins in her feeding tube and I hope she's using it. She told me 2 weeks ago the infection was in her throat and that's all the info she would offer. Last week she said the infection was fine/gone. She's not forthcoming with info. She wants everyone to think she's okay, but I know she's not. I've tried talking to her, to let us help, but she doesn't want to be a burden on her son and myself. I love her dearly and want to help her in her time of need. As far as the home health, they did come in at 1st, but not anymore. We do check on her daily, but I'm not sure if thats enough. We're just loss.
by Advocate_of_Hope on Fri Jan 09, 2009 12:00 AM
by Aoife on Sat Jan 10, 2009 12:00 AM
I had chemo over two years ago now and have forgotten most of it - I thought the surgery was bad but maybe that is just me! My family still find it hard to talk about the time when I had chemo as apparently I was very sick but I would go through chemo again no problem if I had to.
In terms of the OP - it does take time to feel yourself again - it took me two weeks after chemo ended for me to start to feel normal but remember I was only 32 at the time and was getting married 2 weeks after the end of my chemo so I had a lot to look forward to. I used to get through chemo by sleeping the first week after it (getting a massage towards the end of week one to get rid of the "fizzyness" I felt), starting going to the shops and maybe seeing my husband to be for lunch at the second week and doing really nice things in the third week. Can only speak from personal experience. I was stage 3 also. Now nearly 9 weeks pregnant!
by tongrenhealer on Sun Jan 11, 2009 12:00 AM
Each progressive round of chemo is harder to recover from. That being said...I suspect she is not using her feeding tube and is dehydrated. If she has a feeding tube and was in the hospital, they must be using it to feed her while she is there. They wouldn't just have a patient and not feed them. Is it a g tube (stomach) or j tube (jejuneum-small intestine)? Does she have a pump or are they just making her pour food into tube. A pump allows it to go in slowly which is easier to tolerate, and can be set up with VNA till patient can do it or have someone do it for them. We were able to run our pump just at night while he slept. Can also just push water into tube if she needs more hydration but won't drink enough. If she loses too much weight, she will have fewer options and surgery may not be a possibility. I can't imagine EC patients taking care of themselves and actually making it. They have too much going against them. There is no way my husband would have fed himself or drank enough if I wasn't there pushing it all the time. Nothing sounds good, tastes good, etc. He actually eats foods he rarely eats during chemo and then won't touch them after. There have been times I have had to put things like pans of stew on the steps in the snow just because the smell was nauseating, so imagine trying to care for yourself while you face these kinds of challenges. If you haven't been there...you can't even begin to imagine. I suspect the people who can't accept help are the ones who don't make it (I would be a terrible patient since I don;t accept help willingly).
I'm sorry to say these things because I know they are hard to hear. If she's not upset you are asking from support from the group, perhaps you could share some of the posts with her so she realizes she is not alone and she may need a bit of help.
Will keep you all in my prayers.
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