I'm gathering information for my friend Glenn, who was diagnosed about a month ago and has since suffered a stroke, will soon begin chemo with a cocktail called Cybor-D. I would be grateful if anyone can share experiences or advice about how to prepare, what to expect, anything you wish you'd had or known before doing chemo? Glenn's amyloidosis is affecting his heart. The stroke obviously is complicating everything, although he's doing a good job recovering.
Another thing - is there anything nutritionally that anyone would recommend? Anything you found helpful?
Thank you for reading this! Any and all advice is helpful!
Hi,
My mother is a big fan of Salese lozenges by Nuvorainc.com or Dry mouth gum purchased at
Walmart. Lack of Taste and dry mouth are a common
Issue and side effect with chemo. Both products
Make your mouth feel clean and produce saliva.
Take care, stay positive!
Best wishes,
Ray
Hi, My mother is a big fan of Salese lozenges by Nuvorainc.com or Dry mouth gum purchased at Walmart. Lack of Taste and dry mouth are a common Issue and side effect with chemo. Both products Make your mouth feel clean and produce saliva. Take care, stay positive! Best wishes, Ray
as for advice right now..keep a good diary and research like crazy..keep all health care providers informed.even the little things..Am just this week starting mixing Beneprotien (a whey product) in some of my meals and drinks..that is what my dietician suggested...the stuff is not great tasting but not terrible..depends on the person I guess..My chemo is once a week sometimes things go ok other times a real adventure. For the stomach I take nexium and gingeroot capsules...also eat alot of small meals rather than just a few big ones..Yogurt can help too for some before chemo..You have to experiment a bit ..mike
I hope that things are going well. Whilst I was on the CTD chemotherapy (which is daily tablets) I found that both lack of appetite & taste made food unattractive, but found that when I didn't fancy anything else a 2 egg cheese omelette was always at least acceptable. My specialist nurse at the National Amyloidosis Centre said to forget about low fat & so forth & eat all the "wrong" things - butter, full cream milk, cheese etc, but aim to have a maximum of 1.5lt, (about 2.5 pints, of nearer 3 US pints) of fluid a day, which was a bit tricky at first, but now I have about 1lt a day of drinks. Fluid retention was a real problem, but is much better, especially in my legs which are a bit thinner than normal now. I still have fluid in my chest cavity, which sometimes makes me a little breathless, but the cardiology team are on the case & I'm on diuretic tablets to try & reduce it. I am hoping that, now that I've finished the chemo, (9 weeks ago) the fluid retention will improve further. It seems to be a common problem. I would say that getting help as soon as you notice your ankles getting thicker would be good advice. I didn't & it got a bit difficult for a few weeks - a fortnight in hospital on intravenous antibiotics & diuretics & a couple of months when I couldn't drive because my legs wouldn't bend enough to get in the car without difficulty. Doing this has reduced my weight from about 75kgs (about 160lbs) to about 64kgs (about 143lbs) now. Whilst I have lost muscle most of the loss is fluid.
My Mother lost her fight November 1. Her amyloidosis was exacerbated by the chemo. My Mother told me before starting that chem had never ever cured anyone in her family and had always killed. It did my Mom. I pray that everyone else is doing good. Mom was at her 11th hour and had no other choice.
Ive worked as a nurse for over 20 years and several of those years in Oncology and this was the wrose death I have ever witnessed. Oh dear GOD why cant you stop this horrible disease. Ive questioned so much. It is just unreal and unjust.
Hope everyone is have wonderful results with treatment.
Carla
Chris said:
I hope that things are going well. Whilst I was on the CTD chemotherapy (which is daily tablets) I found that both lack of appetite & taste made food unattractive, but found that when I didn't fancy anything else a 2 egg cheese omelette was always at least acceptable. My specialist nurse at the National Amyloidosis Centre said to forget about low fat & so forth & eat all the "wrong" things - butter, full cream milk, cheese etc, but aim to have a maximum of 1.5lt, (about 2.5 pints, of nearer 3 US pints) of fluid a day, which was a bit tricky at first, but now I have about 1lt a day of drinks. Fluid retention was a real problem, but is much better, especially in my legs which are a bit thinner than normal now. I still have fluid in my chest cavity, which sometimes makes me a little breathless, but the cardiology team are on the case & I'm on diuretic tablets to try & reduce it. I am hoping that, now that I've finished the chemo, (9 weeks ago) the fluid retention will improve further. It seems to be a common problem. I would say that getting help as soon as you notice your ankles getting thicker would be good advice. I didn't & it got a bit difficult for a few weeks - a fortnight in hospital on intravenous antibiotics & diuretics & a couple of months when I couldn't drive because my legs wouldn't bend enough to get in the car without difficulty. Doing this has reduced my weight from about 75kgs (about 160lbs) to about 64kgs (about 143lbs) now. Whilst I have lost muscle most of the loss is fluid.
Carla am so sorry to hear about your mother....Really have a hard time with this one as one who is going through chemo with both good and bad results...Having met many others at the chemo center have met with some that the chemo seems to have been a miracle. For me it's a mixed bag..know chemo has made things worse for some and in my gut I feel there must be a better way out there..In any event been shaken up alot today so not sure what really to say next...I hear from time to time about natural cures fro cancer etc..you gotta wonder if there is something to that better than taking poisonous chemo meds...Of course there are quacks who come out....Guess not a majic wand someone is going to hand us. At the very least I hope the medical staff learned something from your mother's ordeal..Sorry but that's all I can say right now..take care..mike
I had CTD chemotherapy & it has apparently worked very well. The specialist at the National Amyloidosis Centre said that it had been 99% effective - about as good as it gets. I see that there are various combinations of chemo drugs. Perhaps some are better than others. I had 28 weeks & finished about 9 weeks ago & feel steadily better day by day, more or less. I take your point - taking drugs that say cytotoxic on the bottle is not that great! Good luck.
mike said:
Carla am so sorry to hear about your mother....Really have a hard time with this one as one who is going through chemo with both good and bad results...Having met many others at the chemo center have met with some that the chemo seems to have been a miracle. For me it's a mixed bag..know chemo has made things worse for some and in my gut I feel there must be a better way out there..In any event been shaken up alot today so not sure what really to say next...I hear from time to time about natural cures fro cancer etc..you gotta wonder if there is something to that better than taking poisonous chemo meds...Of course there are quacks who come out....Guess not a majic wand someone is going to hand us. At the very least I hope the medical staff learned something from your mother's ordeal..Sorry but that's all I can say right now..take care..mike