Coffee and Cheese

Oh Yeah
I was not able to eat at all the first 6 months after Dx. Then Chemo and radiation did away with the tumor and I was able to eat again until the end of June 2011. Now I am back tube feeding full time as there is a mass in the esophagus that is preventing food going down. During the time I was able to eat, whole milk and cheese made with whole milk tasted rancide to me. I was on chemo during this "eating period" so I had the same issue you describe. Try low fat milk and low fat cheese. It made a difference for me and it may for you. Now I am on formula full time. The good news being I don't taste anything, the bad news is I loved to eat.Sam stage IV 4- April 2010

Yep
This happened to my husband, too. When he was done with chemo, one of the nurses said to work back into it slowly, drinking cappuccinos first since the coffee would be somewhat diluted. It was great advice and before long he was drinking regular coffee again.

Mary

JReed said:

Coffee
Rick, Sam & Mary:

Don just started radiation on Tuesday and chemo on Thursday and this morning when I woke up he said his stomach was upset and that the coffee smelled terrible to him and when he mentioned food, he just held up his hand in the "stop" position.

I posted something on our facebook group and Paul and Chantal and Ginny all got right back to me on this subject. Chantal said that even if she made tea, Lee would leave the room. Paul also suggested to watch any strong odors. I was thinking this was temporary, but I won't be surprised now if he doesn't want any coffee for a few months. He has always like one or two cups of coffee in the morning - any suggestions for another morning drink that you pioneers have found?

Thanks,
Judy

P.S. Has anyone heard from Jerry Wright? I think he is about 3 weeks into treatment and was doing pretty well, but I haven't noticed any posts from him this past week?

I had forgotten about Strong Odors
Nick HATED the smell of cooking when he was going through treatment. The kids and I ate out a lot during those 6 weeks.

One thought about coffee - I believe it's a dehydrator. During chemo you want LOTS and LOTS of hydration so the chemo gets throughly flushed through the kidneys. During 1st chemo, Nick was drinking 4 - 5 Bubba mugs (62 oz) of water daily. 1st chemo was a breeze for him. 2nd chemo was a bit different and a bit harder. He was drinking maybe 2 32 oz mugs of water daily. So please tell Don, lots and lots and then a little bit more water

Don't forget Nick's trick of pre-icing the radiation target. Nick used an ice pack on the target site about an hour before treatment. It helped a lot No internal sunburn feeling.

Love & Hugs,

Terry

JReed said:

How long to leave ice pack on target site?
Hi Terry -

Thank you so much. How long did Nick leave the ice pack on the area for? Don hasn't yet experienced that sunburn feeling - how many radiation treatments did Nick have before he got that feeling? Did he come up with the idea for the ice pack or did someone suggest that to him?

Don drank fluids - water, water with crystal lite in it, and a couple of boost plus and had a pudding cup - probably not as much as he should have, but he was drinking fluids while he was awake today - he was really tired today also so he slept quite a bit.

Also - I don't know if you worked outside the home while Nick had treatment - but I put up a blurb about that to see what others think.

Oh, and another question - at what point does one become a survivor - is there a special date like maybe the last day of treatment, or some other date that you go by? Right now, in my mind, Don is an EC patient - but maybe I should say survivor?

I did not read the book "All I Ever Needed To Know, I Learned in Kindergarten" but I'm pretty sure the author did not have a loved one with cancer - up until now, I've thought that book title was true - but now I think it's B.S.

Thank you Terry
Judy

Hi Rick,
My husband Lee went through the same food odour issues, although his was worse by the sounds of it. Even opening the fridge door made him gag. (and trust me, I scrubbed it until it could not be scrubbed any more, and still the smells were awful for him) Also, the smell of any scented cleaners, perfumes, cooking food and even our very clean and non-doggy smelling dog made him gag.

He also stopped drinking coffee, and even left the room when I was making mine. I would always let him know what and when I would be cooking or cleaning, so he could go to a different area of the house. Some foods were absolutely banned in the house, sausage being the biggie. Some days he would walk upstairs and start gagging, even if the cooking was done hours ago, and windows were open to air the scents out. We soon came to a compromise, that I would eat out more, or eat my main meals at work, and just have non-smelly things for dinner. I ate a lot of salads, cereal, toast and soup for meals!!! But it did help with the nausea.

Lee had all but stopped eating within days of starting chemo, only eating cereal, soup and the occasional bit of pasta, so my not cooking anything smelly was not too big of a problem. Sometimes I would cook something in a larger batch, and freeze small containers for me to eat during the week. Reheating the food did not seem to have the same smell factor.

Lee had this issue the entire time he was on chemo (4 months) but it seemed to ease off a bit once he was done. He never did really start eating again, but the smells didn't bother him so much. (sausage was still banned though)

Chantal

JReed said:

Coffee
Rick, Sam & Mary:

Don just started radiation on Tuesday and chemo on Thursday and this morning when I woke up he said his stomach was upset and that the coffee smelled terrible to him and when he mentioned food, he just held up his hand in the "stop" position.

I posted something on our facebook group and Paul and Chantal and Ginny all got right back to me on this subject. Chantal said that even if she made tea, Lee would leave the room. Paul also suggested to watch any strong odors. I was thinking this was temporary, but I won't be surprised now if he doesn't want any coffee for a few months. He has always like one or two cups of coffee in the morning - any suggestions for another morning drink that you pioneers have found?

Thanks,
Judy

P.S. Has anyone heard from Jerry Wright? I think he is about 3 weeks into treatment and was doing pretty well, but I haven't noticed any posts from him this past week?

Coffee...and Wine
I was Stage 1a and I never had chemo or rads, so my experience has been somewhat different. I had my MIE 7 weeks after my diagnosis, and of course I didn’t have any dietary issues at all before the surgery. Then for the first 3 weeks post-op I was strictly following the UPMC recommended diet of a week each of clear liquids, full liquids, soft solids and then “normal” food, and I had a J-tube for the 1st 2 weeks and was tube feeding at night.

Normal food for me always meant a couple of cups of coffee 1st thing in the AM, and a glass of wine with dinner every night, and in fact I’d put together a small but interesting little wine cellar and it was a sort of hobby of mine. But after my surgery just thinking about coffee or wine completely turned me off – it wasn’t like they made me gag or anything, but I just had no interest in them at all. I even tried taking a sip of my wife’s wine from time to time after a few weeks (I’m 15 weeks post-op now), and it hardly even tasted like wine to me. On the bright side, I’ve discovered teas and while a good cup of tea isn’t the same thing as a good cup of coffee, we now have about 6 different varieties of tea in the pantry and it’s fun to pick which one I want at different times of day.

And last week at a New Year’s Eve party someone poured me a glass of a good Cab and I tried it because everyone else was drinking wine, and lo & behold I liked it! A lot! So now I’m back to having a glass with dinner most evenings (some reds give me an acid stomach, and whites seem to work out better for me now). And this week we had a follow-up appointment with my surgeon in Boston and he said that several of the things I complained about would most likely pass with time as my new digestive system adjusted to what he’d done to it, including coffee and wine, a nagging pain I get in my back in the evening, mild lactose intolerance, sensitivity to simple sugars, and numbness in my rib cage near the chest tube site. And you know what: he was right! I’d been taking LactAid pills since my surgery every time I had a milk product, because at first there were definite dumping-like consequences to eating cheese or cottage cheese, but after the surgeon’s suggestion I stopped with the LactAid just to see what would happen, and it turns out the lactose intolerance has resolved itself. And coffee on an empty stomach doesn’t work out too well, but I’ve been having one after breakfast sometimes and it’s fine. I like it and with food in my stomach it doesn’t cause problems.

So I guess the lesson I’ve learned, and I know others on the board have said so from time to time, is that our bodies are abused by this disease and by the medical procedures we need to treat it, and it takes time for our poor bodies to adjust to the “new normal.” Chemo, of course, adds a whole new dimension to that phenomenon that I’m fortunate to not have experienced, but for my part I’ve learned that I have to be patient, make adjustments to my diet and my expectations, maybe try things from time to time that didn’t work out well at first, and accept the fact that some things I used to like simply can’t be part of my life anymore. Like I’ve seen William say from time to time, I miss the chocolate, but it’s better than having cancer!

Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

Bill has not lost his taste
Bill has not lost his taste for coffee or cheese. He has had 2 chemo treatments and the 3rd is this week. No surgery (none planned doe to other health problems) and no radiation (that is coming in about a month after the 2 month induction chemo). He has a very poor sense of smell. I wonder if that makes a difference as far as going off certain foods.

JReed said:

How long to leave ice pack on target site?
Hi Terry -

Thank you so much. How long did Nick leave the ice pack on the area for? Don hasn't yet experienced that sunburn feeling - how many radiation treatments did Nick have before he got that feeling? Did he come up with the idea for the ice pack or did someone suggest that to him?

Don drank fluids - water, water with crystal lite in it, and a couple of boost plus and had a pudding cup - probably not as much as he should have, but he was drinking fluids while he was awake today - he was really tired today also so he slept quite a bit.

Also - I don't know if you worked outside the home while Nick had treatment - but I put up a blurb about that to see what others think.

Oh, and another question - at what point does one become a survivor - is there a special date like maybe the last day of treatment, or some other date that you go by? Right now, in my mind, Don is an EC patient - but maybe I should say survivor?

I did not read the book "All I Ever Needed To Know, I Learned in Kindergarten" but I'm pretty sure the author did not have a loved one with cancer - up until now, I've thought that book title was true - but now I think it's B.S.

Thank you Terry
Judy

When a Survivor?
Hey Judy,

Thats a great question. I never did find out if there was a medical milestone that one has to cross to be a survivor. In my case, at some point after my 3rd or 4th post op scan, which was I guess about a year after my surgery date, my oncologist pronounced me in remission and called me a "Survivor". He then scheduled to have my port removed. But again, I never did find out why he said it then. Guess I was too happy to ask questions. So that's my experience, may not be much help. But It's one that I'm confident Don will share. Give him my best and hope for all good things for you both..

Kirk

BobHaze said:

When a Survivor?
I met with a Social Worker at our local Cancer Center and I mentioned that I didn't know whether to consider myself a cancer patient or a survivor. His response was that I became a Survivor the minute I was diagnosed, and he suggested that it's important to think that way...to think positively. I kind of liked that! :-)

Bob
T1aN0M0
MIE 9/23/11

I like that as well Bob.

I like that as well Bob.