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Old 09-04-2009, 10:05 PM   #261
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oh yeah, trader joe's now has a pear sauce (akin to apple sauce) that my daughter is loving too... ((hugs))
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Old 09-07-2009, 03:32 PM   #262
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Hey Ratface
I just caught up on this thread. In spite of all your treatments, you are definitely sounding OK from here. Good stuff
A few ideas if you haven't already thought of these...instant mashed potatoes in a very thin consistency, like potato soup, or low salt cream of mushroom soup at whatever temperature you can tolerate. Both are very mild in taste and filling.
What does your treatment countdown stand at now?
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Old 09-07-2009, 05:51 PM   #263
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I have one more chemo on Friday which I dread. Then 18 more Radiation treatments. The radiation burns are starting to extend around and down the neck. I just cut the top of a pull over shirt so it dosen't rub on the neck all the time. I also put some prescription ointment on it. Dw thought the instant mashed potatoes might work also. I just managed some cottage cheese with sips of water by mouth. Yesterday I managed some salad which I'm not supposed to eat for fear of contamination. Going to call the insurance company tomorrow and tell them I am at the point of needing a supplement for tube feeding and see what they pay and where I can get it. It's a real PITA sticking that syringe in the tube and pushing it through. It goes to fast and you feel full all the time with small amounts. They have gravity bags and pumps but I need to learn more about those.

The Trader Joes thing is what got me in this mess in the first place. Tough walking past that wine display, although I image it would go easy through the tube.

Pondering a serious quetion though. Yesterday I opened a can of lentil soup and without thinking just threw it in the blender. Since I was going to tube feed it I don't need it hot. Does this stuff have to be cooked?
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Old 09-07-2009, 06:27 PM   #264
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I would ask the chemo nurses what they recommend for tube feedings . They deal with this all the time and may even have printed material to guide you . As for supplements Ensure is a great supplement . I would also call the American Cancer Society and see what information they have on tube feeding .
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Old 09-07-2009, 07:02 PM   #265
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Dear Ratface,

Thanks for faithfully telling us everything new that happens. It takes guts to sit down at the computer and re-hash everything you are going through. I think of you every day and wonder how you are doing. Using a feeding tube sounds difficult, but I guess if you cannot swallow, you gotta eat somehow. As for the lentil soup question, I suspect any kind of canned soup could be eaten cold, since it is already cooked. As Freebird suggested, you might want to look for low-salt soup, since you can't taste it anyway, and excess salt does you no good.

How do the doctors know you are making progress? Do they test for cancer every now and then, to see if there are fewer cancer cells, etc.?

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Old 09-07-2009, 07:41 PM   #266
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Friend of family diagnosed with Non Hodgkins Lymphoma about 15 years ago. She's fine. Co-worker diagnosed with the same thing more than 15 years ago. He's fine also. I'm sure you'll be fine, but it might be a long road. I wish you the best.
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Old 09-07-2009, 08:51 PM   #267
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Quote:
How do the doctors know you are making progress? Do they test for cancer every now and then, to see if there are fewer cancer cells, etc.?
I think it's an educated guess based on past experience. To be honest they are a lot more optimistic about the outcome than the stats for this type of cancer indicate. They feel the lymph node and estimate that it's gone down. The Chemo Oncologist says it feels softer. I'm really surprised they don't take digital images. No one will know for sure until the next Pet scan is done which is still months away.
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Old 09-08-2009, 07:17 AM   #268
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Originally Posted by ratface View Post
. They feel the lymph node and estimate that it's gone down. The Chemo Oncologist says it feels softer. I'm really surprised they don't take digital images.
I know that is a good sign when one has had a bacterial infection. In fact, I was told that it can take weeks after an infection is gone, for the lymph nodes to go down. Now, I know a cancer is not the same as an infection! Still, if your doctors (who have felt their share of lymph nodes) feel this is an encouraging sign, let yourself be encouraged! You are braving the worst slash/burn/poison they can throw at your disease. It is certainly hurting you personally, so if it was having no effect at all on your cancer I would be surprised. That is not the same as getting rid of the cancer - I know. But it is a step.
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Old 09-08-2009, 05:38 PM   #269
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RF,

My prayers are with you and your family as you fight the beast we call cancer. Your treatment side effects sound much severe than what I experienced but keep fighting the good fight.

I know it's a cliche but they say tough times don't last but tough people do. You're a tough guy.

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Old 09-08-2009, 05:51 PM   #270
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Ratface, you are amazing. You are so rational about the whole thing. I would be a basket case.

I presume your cancer team includes a dietician who needs to be involved just about now.

I wouldn't worry about not having enough imaging to check your progress. Good old clinical signs can be very useful and the response to treatment will take time. I'm sure you will accumulate a large image album eventually!

One day at a time.
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Old 09-08-2009, 09:02 PM   #271
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RF, my beautiful partmner came down with breast cancer 4 yrs ago and went thru much of the mental naguish you are still dealing with... 8 chemos and 12 radiation treatments later and 3.5 years... she is just another person on out green and blue ball... you too will learn to deal with your treatment plan and in time your "issue" will hopefully be a distant memory... remember cancer is a disease that you have no control over... what you are thinking you have complete control over.
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Old 09-09-2009, 10:47 AM   #272
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I have always been rational and logical but not a day goes by that I'm not to some degree terrified of this thing going "Bad". I may be a big strong man but without the anti-anxiety medication I take twice daily I could not be posting on here. I have an appointment with a nutrionist on Thursday to discuss caloric needs, supplements and methods of delivery. I'm thankful that when the doctors suggested a feeding tube I went along with it since they obviously knew the day would come. I look forward to all of you checking in on me regularly, kind of like visiting a neighbor. Well time to go shoot some boost through the tube. It's 360 calories and I can only tolerate two. Hoping the nutrionist will come up with something higher, I've seen carnation mixes in the mid 500's. Chocolate or vanila today?
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Old 09-09-2009, 01:21 PM   #273
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Whenever I get sick or down, my mom will say.."There's a pill for that!"

I applaud you for getting all the help you can; not only from your doctors, but this forum as well. You like people to check on you regularly? Well watch out...you've opened the floodgates for me.
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Old 09-09-2009, 02:51 PM   #274
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Definitely chocolate.
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Old 09-09-2009, 03:12 PM   #275
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Ratty I didn't know if anti-anxiety meds were on your pharmacy buffet table (although I know Dawg would be happy to prescribe some of his!)--I'm glad to hear they are as the anxiety level has to be off the charts for you.

Hang in there.
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Old 09-09-2009, 03:29 PM   #276
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Ratface, last year we went to my gal's 40th HS reunion. A great group of old raisins, they had slideshows of them all through high school. One guy was looking dapper and quite a bit better than most - he had improved since his perpetually pudgy HS years. Fun guy, a professional photographer. Everyone was commenting on how good he looked and asking how he had lost the weight - his answer was "the cancer diet". He'd had a sore on his gum that wouldn't heal - turned out to be a tumor, by the time things were done they had removed half his lower jaw. Horrible, right? Here's the kicker - they replaced that portion of his jaw with a chunk of his hipbone. His joke was that he now had the jawbone of an ass - as I said, funny guy. I talked with him quite a bit and really looked for sign of the operation or weird speech and could not spot a single thing. Think his operation was several years prior. Freaking medicos are getting pretty darn tricky! Soldier on ol' horse - you keep ticking and they'll do their part.
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Old 09-09-2009, 06:37 PM   #277
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Ratty,

Thanks once again for the regular posts, you are an amazing guy and inspire us all.
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Old 09-09-2009, 06:49 PM   #278
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RF, I check for your updates regularly and am so encouraged by your strength through this ordeal.
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Old 09-12-2009, 09:03 PM   #279
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Just a real bummer of a Friday which was supposed to be my last chemo. DW and I were all set at our favorite chairs by the coffee and bathroom when the nurse said my white blood cell counts were too low for treatment. I was told to go home and avoid getting sick. Depresssed me for the rest of the day. Going to try again on Monday.

Rest of friday was horrific in fighting with insurance company and company that is providing my tube feeding supplements. Constant phone conversations that were really all unnecesary. In the end it all worked out and everyone is doing what they should have done to begin with and I had my supplements delivered. But what a battle. Was glad to see Friday end. Hoping My blood counts are up by Monday, I was really close to the cutoff. I've decided to do nothing but rest and get proper nutrition. One of the hardest things for me to do is to be idle.

Nutrionist put me on Jevity 1.5 cans of nutrional supplements, six per day throught the fedding tube. Looks and smells like PET milk. Should be 2000 calories per day.
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Old 09-12-2009, 09:14 PM   #280
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Hi ratty,

Disappointed to hear that your last treatment has been delayed a little but it sounds like that it will happen real soon once you get the right nutritions into you. But what a bummer having to stress out with getting all the insurance and other details sorted out. It sounds like you have all that in order as well - well done.

Keep going and keep on posting.
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