hopeseeker
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Mary,
Thank you for your input and advice. I do feel it’s so frustrating to hear things from drs and then it not be the whole picture. I also understand the drs don’t always know exactly what is going on until time tells them more.
My MIL got her tumor markers back last week and they have gone up despite the chemo she’s on. Her oncologist is going to keep her on the chemo until the end of October when he checks her tumor markers again. They doubled in a month. I’ve read that tumor markers don’t mean anything so why do drs use that as a diagnostic or determining factor?
It really discouraged my MIL when she was told the markers had gone up so much in a month. She said she felt depressed and had a rough few days. She sleeps a lot and tires easily as it is, so this news just made it worse. She has trouble keeping her dinner down sometimes and her swelling can be a nuisance. She has seen a reduction in the amount of swelling in the past day or so (yay!) with consistently taking her diuretic and keeping her feet up. She’s had a good day today and said she felt better all the way around which was good to hear!!
Gavin,
Thank you so much for your input and for the links. I looked at them all and found them helpful. She has a diuretic to take but it’s not helping. Maybe a different one would be more effective? She does not have the abdominal boating or swelling though which is a very good thing!!
I was speaking with my MIL and she feels maybe the swelling is due to the tumor and poor liver function, but she (and we) hope that’s not the case. Her tumor markers were up at her last appointment 2 weeks ago. We are hoping they are down at her appointment next week since she’s been on her new chemo for a while.
She is a little discouraged I think, but trying to stay positive. We are just going to have to see what the dr says at her next appointment. She says she feels very good other then the swelling and the hand foot syndrome that is only effecting her feet so far. I feel maybe the dr can give her something to help with that or maybe lower her dosage if Xeloda. She’s on 500mg pills 4 in the am and 3 in the pm – 3500mg a day.
I sure appreciate everyone’s help and tips. Also just the kind words and support are very welcome and comforting.
Hopeseeker
PK8124,
I am so sorry you are having to face this at all, but glad that KarenD was able to give you some information. It’s the unknown that makes this process so difficult, but with some knowledge and help it can be much easier.
We are not at this stage with our loved one, but I have done some searching and reading on this site to get a handle on what to expect. All of us die at one point, but with this cancer it seems to be sooner rather then later.
I hope you have found some comfort and that you are able to handle this with grace and ease even though there is nothing easy about it at all….you are in my thoughts and prayers as you face this difficult time.
Hopeseeker
So very sorry you are having to deal with this, Hopeful, but glad to hear that your husbands quality of life has improved some since chemo has been stoped. You both are in my thoughts and prayers.
Your outlook is so positive even in the midst of great hardship. Thank you for that.
Hopeseeker
Gavin,
Thanks so much. I’ve done some searches on here, but not coming up with much. I know at one point her dr told her the bloating and swelling were just part of the symptoms she will face in her condition.
She does try to put her feet up and drink water. She says she feels really good, but she is tired of course ad naps on and off during the days. She’s not overly worried about the swelling so I guess I shouldn’t worry either, but my drive to know and understand pushes me to search and try to find answers to what’s going on exactly.
I was just trying to see if maybe she could do or eat something to help relieve the swelling some, but maybe she’s already doing all there is and it’s just part of the process.
Thanks again,
HopeseekerMary,
Thank you for your input. She doesn’t like to bother her dr or nurse at all. I have had to call several times to let the nurse know some side effects she was having. She is one to just suffer through the side effects and said she is getting used to the swelling. She said she has slight hand foot syndrome but it’s not bad. She is a tough woman!
I was just curious if anyone had any suggestions that I could pass on to her. She’s trying to drink a lot more water, but that’s not helping much. She really hasn’t had a terrible time with side effects and her first round was fairly easy on her.
Hopeseeker
Kim,
It seems she has been able to handle regular milk again as long as she is going to the bathroom. I think the switch from Gemzar/oxiplatin has been a very good change. I think it was too hard on her system, but Xeloda seems to be good for now.Gavin,
Thank you for the links and input. She seems to be eating better and small amounts through the day. Her sister is putting a yogurt in her smoothies and I know the extra protein and calories in those will help too.I am not sure she’s eating enough calories, but I know she’s eating and hungry so that is good. She may be able to increase her meals as she gains more strength? Fingers crossed that she is on the upward swing, and she won’t have lost more weight at her next drs appointment!!
Thank you all for the great resources and info
Gavin,
Thank you for the links. I read a little of them and will go back and get more info to add to our arsenal of tips and ways to fight this. My MIL isn’t too keen on dairy but maybe some milk substitutes that are higher in fat like coconut milk or something?
We will keep pressing on and wish for the best!!
Hopeseeker
Positivity,
I’m not sure how much weight my MIL has lost since diagnosis, but I’m going to try to find out. I know it’s been a lot, and I would say 25-35lbs easily. She does have 2 stents also. Hard to keep up with everything since we live about 2 hours away.
I think that is right about the drs. They treat with chemo and not so much nutrition. My MIL’s oncologist nurse was very helpful on the phone though and suggested some things. Problem is my MILs tastes have changed and she no longer like chocolate (which she used to love), she has never been a fan of vanilla and dairy give her gas, so we’ve given her a smoothie recipe for her sister to make for her and she likes that.
We bought her all the smoothie supplies so she could have them often. She seems to have early satiety also. Eating one piece of bacon, a tiny bit of eggs and 3 or 4 bites of a biscuit for instance. As long as she’s eating though, that’s good. She had stopped eating for about a week due to constipation, bloating and gas a week or so ago. She seems to have made it past that with just a little bloating here and there, I’m sure depending on what she eats. She does have an appetite, but she may doesn’t eat very much.
I noticed at our last visit with her that the skin on her forearms just sort of hangs. I don’t know how to describe it, but it’s like she’s lost so much weight (in her arms even) that her skin is sagging. She was wearing a house dress/moo-moo type thing for comfort (she can’t stand to wear things that are up against her skin such a bra if she doesn’t have to) It was odd to me and part of why I am looking for nutrition and supplement calories for her.
My MIL is now on Xeloda and we hope this treatment will be easier on her then the last chemo which was infusions she was getting. Hope her appetite increases and she can keep the constipation and bloating under control.
Thank you all for your input. I am glad I found this site to get info and vent when I need too.
Karen,
Thank you for this list. Keeping nutrition up can be difficult, but I would think oncologist would know what to look for and be aware of this and be looking for it? I’m assuming they do not.
Positivity,
What symptoms cause you to think this is the case for your mother? I am trying to keep an eye out and learn what I can for my mil and her case.
Thanks for your input.
Mary,
Thank you for your input. It seems that Xeloda is a good choice and that many have great success on this chemo. It is nice that she won’t have to go in for infusions now and will just go to have her blood drawn in a few weeks.
My MIL is feeling much better these past days and not suffering in the way she was on the previous chemo regime. This is very good and we hope it keeps up. Hoping and praying for no to very minimal side effects from the Xeloda.
She should be getting scans done around the end of September or beginning of October. Maybe Xeloda will decrease her tumors more, and curious if they will help the lymph node mets.
Hopeseeker
Questions for everyone,
I have been doing some searches on this site for Xeloda and most often I see it combined with another chemo drug. Is it common to take just Xeloda by itself? I spoke with the nurse who works with the oncologist and she said her stage and type of cancer isn’t curable so is this a last line of palliative chemo?Her oncologist took her off Gemzar and Oxiplatin due to her bad reactions and possible allergy to Gemzar.
Hopeseeker
