diagnosed with lymphoma

ratface said:
And week number five comes to an end. Swallowing has become very painful but really no other complaints. The neck radiation burns are also beginning to be bothersome. Because of the holiday weekend I get to skip radiation on Monday and then my third round of cisplatin a week from today. Doctors all seem very pleased with the progress to date. Everyone have a great and safe holiday.
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That is wonderful news!! Five weeks of this behind you already, and good progress too. Enjoy your holiday weekend. :flowers:
 
Keep going ratty, only 3 weeks of treatment to go, all the very best from da' bayou's :flowers:
 
You say swallowing is painful for you. I don't know how to help in that respect, but I do have a suggestion if you have mouth abrasions. Ask your doctor about Chlorhexidine. My dentist gives me a bottle of this on occasion...the strength is .12%. It works miracles for me.

I hope you have a great weekend too....:)
 
Glad the doc is happy with your progress. I'm sorry about the swallowing problem. Hopefully that will ease up soon.
 
Ratty, I hope after the long weekend and the Monday radiation holiday the swallowing problem eases up a little. Is your son coming home from school for the weekend? Bet you miss him!
 
Ratface, it sounds like you are going through so much, we all feel for you here.

I have no idea what your stomach will tolerate - but if it's just about swallowing - then I know most foods do go into a blender! My brother in law had his jaw wired shut and my sister would blend everything. He was so frustrated with soup that she resorted to throwing a pizza in the blender (w/ some liquid) and he was so happy!

Also, there are tons of healthy energy boosting smoothies you could try - even just whatever combo of frozen berries you like (raspberries, blue, black, etc) a splash of juice (apple, orange, cranberry - whatever you have), yogurt and if you're ambitious about nutrition throw in a handful of spinach...and blend!

my little ones are also into jarred/canned pears (which are really soft) and those are good for getting the motion back in the lower regions too...
 
Sending you lots of hugs and much love.....you are doing awesome :)
I hope you have a wonderful weekend and enjoy your family :)
Eat lots of ice-cream.....that should help with the swallowing!
 
Ratface ,
Have you been taking ensure ? It will help with your nutrition . You are doing a great job .
 
I have been drinking ensure. I also have been eating los of ice cream and shakes but I think that is over. The cold is now very painful. Today I was able to get a bowl of soup down that was in the blender first but only by following it with sips of water. I think its time to acceapt the fact that I must start using this feeding tube that is embedded in my stomach. I'll tyry pushing some ensure through it tomorrow. Perhaps the 3 days off from the radiation will help also. Canned pears sounds really good though as well as canned peaches. Anything citrius would send me screaming. Appreciate all the encouragement.
 
oh yeah, trader joe's now has a pear sauce (akin to apple sauce) that my daughter is loving too... ((hugs))
 
Hey Ratface
I just caught up on this thread. In spite of all your treatments, you are definitely sounding OK from here. Good stuff :flowers:
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?
 
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?
 
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 .
 
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.?

Amethyst
 
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.
 
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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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.
 
ratface said:
. 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.
Click to expand...

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.
 
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.

2soon2tell
 
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.
 
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.
 
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?
 
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. :flowers:
 
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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