Aa
mostly noticing
Hi, I've mostly been noticing a bit of nausea during the day, most of the time, but if I get busy enough I dont notice it. I do have a bag of p'nut butter pretzels on hand, and today I think I'll get some mixed nuts to munch on.
I'm also noticing fatigue, and then some shortness of breathe. My guy at the clinic said my hemoglobin is going down, so yesterday I ate some beef stew, (haven't had red meat in 30 years ) I think I'm going to make some soup with a marrow bone. Its funny I want food, but then when I look at it or try to decide what to have ( all the choices we have ) nothing really sounds good. Its only been 4 weeks on tx. and I'm hoping for the best ( of course )
Its funny just driving the car makes my arm muscles sore, and going up and down the stairs that I've done a million times catch my breathe.
I feel a little better after having the beef stew, dont know if its psychological or what.
I see the doc/clinic on Tues. should know more then.
all the best,
Mary4now
I'm also noticing fatigue, and then some shortness of breathe. My guy at the clinic said my hemoglobin is going down, so yesterday I ate some beef stew, (haven't had red meat in 30 years ) I think I'm going to make some soup with a marrow bone. Its funny I want food, but then when I look at it or try to decide what to have ( all the choices we have ) nothing really sounds good. Its only been 4 weeks on tx. and I'm hoping for the best ( of course )
Its funny just driving the car makes my arm muscles sore, and going up and down the stairs that I've done a million times catch my breathe.
I feel a little better after having the beef stew, dont know if its psychological or what.
I see the doc/clinic on Tues. should know more then.
all the best,
Mary4now
Junebug
I definitely had a cold and when my primary (luckily my old primary, when I had insurance gave me a discount for cash pay ) examined me for it, she said I have an upper respiratory infection , but I'm wondering at this point if it isn't a combination, and frankly I may never know, I just have to get used to the constant mucus factory. We shall see, but I did wonder as you noted a sx of the treatment, maybe the billions of virons making their way out.
As long as its not getting worse and I will talk w/ them about it Tues.
Take it day by day, and talk it over with my support people when I need to, thanks for being there, Love
I definitely had a cold and when my primary (luckily my old primary, when I had insurance gave me a discount for cash pay ) examined me for it, she said I have an upper respiratory infection , but I'm wondering at this point if it isn't a combination, and frankly I may never know, I just have to get used to the constant mucus factory. We shall see, but I did wonder as you noted a sx of the treatment, maybe the billions of virons making their way out.
As long as its not getting worse and I will talk w/ them about it Tues.
Take it day by day, and talk it over with my support people when I need to, thanks for being there, Love
Being that you're already undetected (in a week! no less), I would agree that you should be eating whatever appeals to you, especially in light of the nausea. My husband found his nausea increased when anemia increased, along with the usual fatigue; since you're feeling the symptoms already, you should make sure the clinic is keeping up-to-date on your hemoglobin status. You've had a great response, so try not worry about making changes: all you have to do is "maintain," as you said... make sure you take it slow and easy! Best wishes. ~eureka
Hi Mary,
Are you certain you have a cold? I thought I did but have come to find out it's really the sx of tx. I'm still constantly clearing my throat, since Xmas day actually. On Xmas I was at nearly 4 weeks of tx. It's gotten a little better since then, but not much. I'm just getting used to it at this point. I have a raspy voice from it and now have a raging swollen sore throat every day. Yours might be a cold, but your symptoms sound exactly like mine.
Do you know what your hemoglobin is? With the help of people from this forum, I learned about the rescue drug and ended up begging my doctor for it. My shortness of breath, coughing, and weakness are pretty bad though so I can't see how I could continue without it. From what I read on this forum, decreasing the riba isn't a great thing to do. You might want to read the thread I have on low HGB. Lots of good info.
June
Are you certain you have a cold? I thought I did but have come to find out it's really the sx of tx. I'm still constantly clearing my throat, since Xmas day actually. On Xmas I was at nearly 4 weeks of tx. It's gotten a little better since then, but not much. I'm just getting used to it at this point. I have a raspy voice from it and now have a raging swollen sore throat every day. Yours might be a cold, but your symptoms sound exactly like mine.
Do you know what your hemoglobin is? With the help of people from this forum, I learned about the rescue drug and ended up begging my doctor for it. My shortness of breath, coughing, and weakness are pretty bad though so I can't see how I could continue without it. From what I read on this forum, decreasing the riba isn't a great thing to do. You might want to read the thread I have on low HGB. Lots of good info.
June
Great advice and nice to hear from everyone, I sometimes like to just connect and say hello. I dont think the study advocates rescue drugs, I think they would reduce the riba. but I did feel better today, I also realize I am in the beginning stage here with tx, so I sure hope to maintain,, Like my mom says "dont borrow trouble" one of the "things" that has really been bugging me is I started with a cold over a month ago and I'm still dealing with the symptoms, I cannot go through 5 minutes without clearing my throat, gagging, I actually have to be careful. I'm like a mucus factory, and its been part of my nausea I think, anywho, these are all tolerable and not life threatening, so I shall continue to see how it all goes,
Yeah, I'm really glad I dont have to go the 48 weeks. I hope I still have some luck left to get into the 16 week randomized group, should I stay undetected.
Junebug, I know what you mean, I was fixing a curtain at work and it took me 4 times as long because I had to keep stopping to rest my arms. I hope this is as bad as it gets wouldn't that be nice.
Yeah I grill my sourdough english muffin and then use a little cream cheese cuz that is what they give me at the clinic before the drug follow up, They give me half a bagel w/ cream cheese.
Thanks for the sugar tip, I do enjoy it once in a while. but not too much.
I hope everyone does well and hopefully we're on the road to better drugs.
Yeah, I'm really glad I dont have to go the 48 weeks. I hope I still have some luck left to get into the 16 week randomized group, should I stay undetected.
Junebug, I know what you mean, I was fixing a curtain at work and it took me 4 times as long because I had to keep stopping to rest my arms. I hope this is as bad as it gets wouldn't that be nice.
Yeah I grill my sourdough english muffin and then use a little cream cheese cuz that is what they give me at the clinic before the drug follow up, They give me half a bagel w/ cream cheese.
Thanks for the sugar tip, I do enjoy it once in a while. but not too much.
I hope everyone does well and hopefully we're on the road to better drugs.
Hi mary,
I would just suggest that best to try to cut down on sugars during tx because of Insulin resistance.
But agree with the others with listening to what your body wants!
Congratulations on the undetected!!
Fantastic!
Ozgirl.
I would just suggest that best to try to cut down on sugars during tx because of Insulin resistance.
But agree with the others with listening to what your body wants!
Congratulations on the undetected!!
Fantastic!
Ozgirl.
Wow Mary that sour dough muffin w/cream cheese sounds good. I did not realize you went UND @ wk 1, thought it was 2. I read that food cant help enimia. Many of my friends sugested i eat rasins,spinich, meat and liver:-) but I've read it would not help..Does your study allow for the use of rescue drugs?? what wk are you in now? Im glad you dont have to go the whole 48 wks. Hang in there and good luck @ the doctors. Get rest..Wow UND @ wk !..Thats great. Ginger
Good thinking June and Rhonda - your body needs nuitrition and if I read that thread right everything from meat and fish and vegetables and breads are all out the window. What does that leave you to eat lettuce and carrots? Doesn't sound very healthy to me. Plus your body needs FAT for the riba to bind to so you DO want to try and take it with your breakfast and dinner if you can cause probably that is when you would have the most fat concentration (if you can eat otherwise try peanut butter on some crackers - something, anything is better than nothing).
OOOps our doctors must be wrong to tell us peanut butter is a good idea to have with the riba cause it's a LEGUME silly doctors and researchers!!!!!!!
OOOps our doctors must be wrong to tell us peanut butter is a good idea to have with the riba cause it's a LEGUME silly doctors and researchers!!!!!!!
1st off congrats on your und! I also read that thread about Riba absorption and purines, I was more confused about what to eat then EVER. So I went back to eating what my body tells me I need, what my stomach will allow me to keep down and what my nose will let me get to my lips.
Take care and good luck!
Rhonda
Take care and good luck!
Rhonda
Hi Mary,
I'm on week 12 and I've had and continue have all of the sx you're going through, along with mouth sores, rash, fever, chills, and now, eye problems. The nausea started at the beginning of tx for me but has since left. I lost 12 lbs the first 6 weeks of tx, and I'm thin to begin with so it wasn't a good thing (though, hey, I can now get into my skinny jeans). Now I just try to eat whatever I can. I too saw the purines info and wondered if I should follow it but now I know to just eat what my body will let me eat. I was UND at 4 weeks so something's working.
As for your fatigue, muscle weakness, shortness of breath, I'm very much struggling with all of those issues. I know what you mean about driving making your arms sore. My arms start to hurt and feel weak just lifting them up for a bit. My hemoglobin is at 9.7 though which is probably causing the fatigue, etc. I just started Procrit and hope that will help.
Best of luck,
June
I'm on week 12 and I've had and continue have all of the sx you're going through, along with mouth sores, rash, fever, chills, and now, eye problems. The nausea started at the beginning of tx for me but has since left. I lost 12 lbs the first 6 weeks of tx, and I'm thin to begin with so it wasn't a good thing (though, hey, I can now get into my skinny jeans). Now I just try to eat whatever I can. I too saw the purines info and wondered if I should follow it but now I know to just eat what my body will let me eat. I was UND at 4 weeks so something's working.
As for your fatigue, muscle weakness, shortness of breath, I'm very much struggling with all of those issues. I know what you mean about driving making your arms sore. My arms start to hurt and feel weak just lifting them up for a bit. My hemoglobin is at 9.7 though which is probably causing the fatigue, etc. I just started Procrit and hope that will help.
Best of luck,
June
This is exactly what most of us have been warning about. Speculation is just that pure speculation and while things might sound good often times they are completely wrong or irrelevant (believe me I listened to someone when I first started that I thought sounded smart and almost tanked my entire course of treatment by doing so).
Your doctor should always have the final word and personally with all the nauseau on treatment and the limited "oh that looks good" feeling we always have it's not like you are going to eat that much of anything that is going to negatively effect your treatment anyhow. Gosh you aren't sitting down and having half a cow - beef stew is hardy and has good nutrition in it........you NEED nutrition and FAT and all those things in your diet to maintain some health!
Just use common sense and realize that the person who is advocating this treatment previously also advocated taking human growth hormone and other unhealthy things you would never do - and a no fat diet - then failed treatment...and wonders why.
Discussions and ideas should NEVER be taken as anything but the ramblings of a bunch of heppers - leave the doctors and study folks and drug companies in charge of what is real and what is not. Until they are PROVEN by medical science and study data that is. Then...it's cool ;)
Your doctor should always have the final word and personally with all the nauseau on treatment and the limited "oh that looks good" feeling we always have it's not like you are going to eat that much of anything that is going to negatively effect your treatment anyhow. Gosh you aren't sitting down and having half a cow - beef stew is hardy and has good nutrition in it........you NEED nutrition and FAT and all those things in your diet to maintain some health!
Just use common sense and realize that the person who is advocating this treatment previously also advocated taking human growth hormone and other unhealthy things you would never do - and a no fat diet - then failed treatment...and wonders why.
Discussions and ideas should NEVER be taken as anything but the ramblings of a bunch of heppers - leave the doctors and study folks and drug companies in charge of what is real and what is not. Until they are PROVEN by medical science and study data that is. Then...it's cool ;)
"I did make a mushroom stroganoff,, (not to appealing) and I'm thinking of trashing it based on the purine info and the not to appealing aspect."
Don't be influenced by what you have read about purines Mary. That statement alone is proof of how people can be negatively effected by when topics are discussed with no evidence based medicine to back them up. Whatever your doing is working well, keep it that way.
Trinity
Don't be influenced by what you have read about purines Mary. That statement alone is proof of how people can be negatively effected by when topics are discussed with no evidence based medicine to back them up. Whatever your doing is working well, keep it that way.
Trinity
Yeah good Idea I will put together a few questions and find out what they say at the clinic. Just connecting with you all, letting you know how "things" are going.
thanks for the feedback.
haven't thrown it away yet, maybe it will look better tonight when I get home from the day.
have a good day,
thanks for the feedback.
haven't thrown it away yet, maybe it will look better tonight when I get home from the day.
have a good day,
Gosh, Mary, I'm with Bill, James and your study nurse...just eat and don't add the "what is good to eat for treatment results" add to your stress. There's enough issues while on treatment without adding this issue to your plate.
The nausea that comes with treatment will be the driving force as to what you can and can't eat. Listen to your body and eat whatever it is that you can eat. Nourishment...that's all you need to think about...unless your doc or study nurse tells you different.
Keep up the great progress.
The nausea that comes with treatment will be the driving force as to what you can and can't eat. Listen to your body and eat whatever it is that you can eat. Nourishment...that's all you need to think about...unless your doc or study nurse tells you different.
Keep up the great progress.
Sigh… Mary, don’t throw food away based on advice received in an internet forum. This is a good example of how other’s speculative musing can be harmful… darn it!
If you have specific questions regarding diet or any other aspect of therapy, please, please discuss them with your medical team; they will hopefully lead you in the right direction.
As your nurse says, you’re liver will continue to metabolize, synthesize, filter and otherwise do its intended job. Gosh darn it….
Good luck Tuesday. Why not take a few minutes right now; make up a list of questions for the study team and have them address them during your appointment?
Take good care of yourself,
Bill
If you have specific questions regarding diet or any other aspect of therapy, please, please discuss them with your medical team; they will hopefully lead you in the right direction.
As your nurse says, you’re liver will continue to metabolize, synthesize, filter and otherwise do its intended job. Gosh darn it….
Good luck Tuesday. Why not take a few minutes right now; make up a list of questions for the study team and have them address them during your appointment?
Take good care of yourself,
Bill
Your study team gave you info on purine in the diet ?
You went UND in a week sounds Like a pretty good result. If you are referring to the purine info in the forum, your suggesting that someone on the Internet knows more about the disease than the drug company and the folks administering the study. The study that got you and several other people in the study UND in a week ! Why people are so naive they can't conclude drug companies have factored in bioavailibility into dosage is beyond me. Listen to the people conducting the study, not some whack job on the Internet.
You went UND in a week sounds Like a pretty good result. If you are referring to the purine info in the forum, your suggesting that someone on the Internet knows more about the disease than the drug company and the folks administering the study. The study that got you and several other people in the study UND in a week ! Why people are so naive they can't conclude drug companies have factored in bioavailibility into dosage is beyond me. Listen to the people conducting the study, not some whack job on the Internet.
hey Bill, your sounding like a doctor yourself, hang out with them long enough. My Nurse told me eat whatever you want, can you imagine having that option?
I did make a mushroom stroganoff,, (not to appealing) and I'm thinking of trashing it based on the purine info and the not to appealing aspect.
I'm loving my sourdough english muffin grilled and cream cheese.,, but I do feel somewhat better today, oh heck I dont know. I'll talk with the peeps on Tues.
I did make a mushroom stroganoff,, (not to appealing) and I'm thinking of trashing it based on the purine info and the not to appealing aspect.
I'm loving my sourdough english muffin grilled and cream cheese.,, but I do feel somewhat better today, oh heck I dont know. I'll talk with the peeps on Tues.
I would imagine whatever your diet has been thus far is just fine....UND at Wk1 is the proof. Hang in,and good luck at the docs.
WILL
Mary, I think if you discuss this topic with a qualified medical doctor, they’ll suggest that what you eat during treatment will have minimal impact on either your side effects OR your treatment outcome.
The doctors usually consider intervention when a patient’s hemoglobin falls below 10.0 g/dL; you’re feeling winded from exertion might be attributable to this. Good luck with the doctor’s appointment Tuesday,
Bill
The doctors usually consider intervention when a patient’s hemoglobin falls below 10.0 g/dL; you’re feeling winded from exertion might be attributable to this. Good luck with the doctor’s appointment Tuesday,
Bill
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