made it thru treatments
then a 2 week rest
Then 7 weeeks of radiation with doubles on friday plus dailey chemo
Cisplatin on weeks 1 4 and 7
Drove myelf 60 mile everday didnt have to use peg tube till week 3 of radiation
Like i read its worse now that treatment stopped.
Darkest before the dawn i guess.
Comments
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YES the worst is behind you now! You made itTereB said:Healing
Congratulations Victor!! You finished treatment, you may feel you are at the bottom but now the only way is up. Healing may be a little slow but little by little you will feel better. Take good care of yourself, rest and try to relax.
All the best,
TereB
No more sixty mile drives...It's all about getting rest and healing from here. Congratulations and hang in there ..we are all with you
Mark0 -
Congratulations.......
You have faced the Monster and shown him your resolve. Getting back to your "new normal" will take time and patience. BUT, you are on the road my friend. I live and work in Mexico, so as we say down here.............FELICIDADES y Buenos Suerte!!
JK0 -
jkinobay are your treatments in Mexico or do you come to thejkinobay said:Congratulations.......
You have faced the Monster and shown him your resolve. Getting back to your "new normal" will take time and patience. BUT, you are on the road my friend. I live and work in Mexico, so as we say down here.............FELICIDADES y Buenos Suerte!!
JK
states. What kind of cancer facilities are near you or must you travel regardless?0 -
Live in Mexico, treatments in Tucson, Az.dedesert said:jkinobay are your treatments in Mexico or do you come to the
states. What kind of cancer facilities are near you or must you travel regardless?
My employer transferred us down here in 2000 but fortunately we live about 5 hours from Tucson and also have a second home at Green Valley which is about 20 minutes from Tucson. Add to that the fact that my "routine" healthcare benefits are still in the US and it was a good situation. I had 3 surgeries, 35 rads, and 7 chemos and my employer allowed me to tele-commute from the GV house during the 2 months of treatments, so all things considered it made the situation much more tolerable. I got a referral from my primary care doc to an Oncologist in Tucson who likewise referred me to his choice for radiation and ENT. It all came together, we made it through it, and now almost a year later I feel better than I thought I ever would again. I have my 1 year PET on 11/3 and am counting on another clean and clear report. Life is good thanks to God, an incredible Oncology/ENT team and my Saint of a wife. Not to mention of course the support and advice from a lot of supporters, many of which were right here at the CSN.0 -
Sounds like all good for you now!jkinobay said:Live in Mexico, treatments in Tucson, Az.
My employer transferred us down here in 2000 but fortunately we live about 5 hours from Tucson and also have a second home at Green Valley which is about 20 minutes from Tucson. Add to that the fact that my "routine" healthcare benefits are still in the US and it was a good situation. I had 3 surgeries, 35 rads, and 7 chemos and my employer allowed me to tele-commute from the GV house during the 2 months of treatments, so all things considered it made the situation much more tolerable. I got a referral from my primary care doc to an Oncologist in Tucson who likewise referred me to his choice for radiation and ENT. It all came together, we made it through it, and now almost a year later I feel better than I thought I ever would again. I have my 1 year PET on 11/3 and am counting on another clean and clear report. Life is good thanks to God, an incredible Oncology/ENT team and my Saint of a wife. Not to mention of course the support and advice from a lot of supporters, many of which were right here at the CSN.
Congratulations on your sucess and I wish you continued good health...It's nice to live in Paradise to just to top it off eh?0 -
thanks
thanks for asking I was operated on friday radical neck dissection
i guess im doing ok thanks to morphine and roxicet.
I was just starting to eat again eggs and soft stuff chicken soup taste allright
sweet stuff taste bad. But now im back on the tube because of biopsys on the tonsil area
and swollen neck. started swollowing some eggnog just a few minutes ago so it is getting better maybe alittle scrambled eggs and chicken and rice soup again soon0 -
Radical Neck Dissectionvictor53 said:thanks
thanks for asking I was operated on friday radical neck dissection
i guess im doing ok thanks to morphine and roxicet.
I was just starting to eat again eggs and soft stuff chicken soup taste allright
sweet stuff taste bad. But now im back on the tube because of biopsys on the tonsil area
and swollen neck. started swollowing some eggnog just a few minutes ago so it is getting better maybe alittle scrambled eggs and chicken and rice soup again soon
Hi, Victor. Does 53 represent your age? I'm 55, but was diagnosed when I was 53 and after chemo and radiation had radical neck dissection surgery with the removal of 30 lymph nodes. It may take awhile for you to start eating again (I had a feeding tube for 5 months), but I recommend instant or homemade mashed potatoes (seasoned with whatever you like including chicken soup) and carbs with salt. Eggs scrambled, poached or in an omelet are great as well, because of how soft they are. And now we are in soup season again. I also recommend liquid vitamins and maybe some protein shakes.
My salivary glands were pretty much wiped out by radiation, but I can eat almost anything I like now provided I am willing to devote a lot of time to reaming my teeth and gums afterwards. On the other hand, after 5 months on a feeding tube, I'm pretty happy to be able to eat most "real food" and remember when I "graduated" from potatoes to pasta.
Hang in there.0 -
just a questionsuzhiles said:Radical Neck Dissection
Hi, Victor. Does 53 represent your age? I'm 55, but was diagnosed when I was 53 and after chemo and radiation had radical neck dissection surgery with the removal of 30 lymph nodes. It may take awhile for you to start eating again (I had a feeding tube for 5 months), but I recommend instant or homemade mashed potatoes (seasoned with whatever you like including chicken soup) and carbs with salt. Eggs scrambled, poached or in an omelet are great as well, because of how soft they are. And now we are in soup season again. I also recommend liquid vitamins and maybe some protein shakes.
My salivary glands were pretty much wiped out by radiation, but I can eat almost anything I like now provided I am willing to devote a lot of time to reaming my teeth and gums afterwards. On the other hand, after 5 months on a feeding tube, I'm pretty happy to be able to eat most "real food" and remember when I "graduated" from potatoes to pasta.
Hang in there.
I am 49 years of age. I have cancer on my tonsil and on two lymph nodes in my neck. That is how I found out I had cancer.(Lump in neck)I had 35 radiation treatments and 7 chemo treatments at the same time. Chemo was once a week for 7 weeks.(no side effect) Raidtion destroyed my throat. I have never had the tube put in because I refused.
I am now just starting to eat some food, not much but am getting some down. I drink ensure drinks and milk shakes also. I am still losing weight, is this normal?
I go back in three weeks to see my surgey dr, who diddn't have to do surgery and left my tonsils. If surgey is needed to remove my 2 lymph nodes, will I have to start all over again with eating?0 -
eatingricklevans said:just a question
I am 49 years of age. I have cancer on my tonsil and on two lymph nodes in my neck. That is how I found out I had cancer.(Lump in neck)I had 35 radiation treatments and 7 chemo treatments at the same time. Chemo was once a week for 7 weeks.(no side effect) Raidtion destroyed my throat. I have never had the tube put in because I refused.
I am now just starting to eat some food, not much but am getting some down. I drink ensure drinks and milk shakes also. I am still losing weight, is this normal?
I go back in three weeks to see my surgey dr, who diddn't have to do surgery and left my tonsils. If surgey is needed to remove my 2 lymph nodes, will I have to start all over again with eating?
Rick (I presume) you have not yet started eating in my estimation, so I would not be thinking so much about starting over as I would be about beginning.
I am NOT a tonsil cancer survivor. Instead I had cancer in the tongue and neck, so things are a bit different for you. Even so, why you opted not to get the tube, the JPEG tube that they insert into your stomach, is puzzling.
I am not sure what you mean by the phrase 'destroyed my throat' but it is not an infrequent event that radiation swells parts of the throat and makes eating food difficult. They may be able to correct that eventually via dilation procedures, depending on where the swelling is.
Surgery can also cause some scar tissue and swelling that is not correctable in many cases.
These are possibilities.
In the meantime, you need not to focus on those but on gaining nutrition, on being fit. You do not want to go into surgery, if that must happen, in a weakened state. In fact, they may decide you are not a candidate, depending on degree of weight loss.
I would advise, first, that you reconsider the peg tube, if that is a possibility now. I would also advise that you move beyond conventional ways of eating, and think about all of the ways that you can make a blender your friend.
Think about soups, creamy ones, broths, even. Think about pureed anything (I still put some of the elements of my salads, such as the lettuce and peppers, into the blender, on Pulse, until they are small enough for me to swallow). Think about mashed potatoes and gravy, about creamed corn, about yogurt (great for digestion), about ice cream, about the things you CAN eat.
And then think about changing your schedule, which was probably the last thing I figured out in my own case: you may not be able to eat three square meals a day, as they say. You may need to eat many smaller meals all day long to achieve your goals.
I also advise exercise, even if it is just the daily walk around the block with the dog (or with your significant other), so that the nutrition is properly allocated.
I recommend that highly, in fact, because it also seems to help the psyche.
Finally, to get back to the beginning, you do not want the peg tube. No one does. But if you need it, and if your doctors suggest it, I am here to say that it is not such a bad thing. The two worst problems for me are wound maintenance (not a biggie, really, most of the time) and becoming dependent on it, something that is really a dangerous possibility for type A types, because it is so easy to use and makes absorbing nutrients so much faster and convenient.
I am a survivor, and you will be too! (That is my way of saying I am NOT a doctor, so be sure to talk to your doc before taking any of these ideas on
).
Hope and Humor!
Take care,
Joe0 -
Eatingricklevans said:just a question
I am 49 years of age. I have cancer on my tonsil and on two lymph nodes in my neck. That is how I found out I had cancer.(Lump in neck)I had 35 radiation treatments and 7 chemo treatments at the same time. Chemo was once a week for 7 weeks.(no side effect) Raidtion destroyed my throat. I have never had the tube put in because I refused.
I am now just starting to eat some food, not much but am getting some down. I drink ensure drinks and milk shakes also. I am still losing weight, is this normal?
I go back in three weeks to see my surgey dr, who diddn't have to do surgery and left my tonsils. If surgey is needed to remove my 2 lymph nodes, will I have to start all over again with eating?
Rick,
Soccerfreaks has some good suggestions. There is a cookbook called "easy to swallow easy to easy to chew" that has some good recipes that might help you. You can pick it up at Amazon.com. You might also want to consult a swallowing specialist or a speech pathologist who can check to see how you are swallowing and may be able to make some suggestions as to foods to eat.
I refused the peg for when I went through radiation and chemo but had to have it put in for my surgery. If I had to do it over again, I would take the peg and use it as a supplement for when I couldn't get food down. Because of this I lost 95 pounds through my radiation and chemo. At points I was only getting a single glass of Gatorade down a day.
If you are getting as much down as possible and still losing weight, there are powders that you can get at health food stores that can add not only nutrition to what you are getting down, but they can add needed calories. I had one that was 700 calories for a serving of the powder. This could be added to your milkshake or ensure even if you do a half dose, that might be enough calories to keep your weight up.0 -
I had! nasalpharyngealricklevans said:just a question
I am 49 years of age. I have cancer on my tonsil and on two lymph nodes in my neck. That is how I found out I had cancer.(Lump in neck)I had 35 radiation treatments and 7 chemo treatments at the same time. Chemo was once a week for 7 weeks.(no side effect) Raidtion destroyed my throat. I have never had the tube put in because I refused.
I am now just starting to eat some food, not much but am getting some down. I drink ensure drinks and milk shakes also. I am still losing weight, is this normal?
I go back in three weeks to see my surgey dr, who diddn't have to do surgery and left my tonsils. If surgey is needed to remove my 2 lymph nodes, will I have to start all over again with eating?
I had! nasalpharyngeal carcinoma so it is different from yours. But I did have the peg tube for 6 months. I am almost a year out of treatments so eating has been a challenge. I would recommend going to GNC stores and trying Mass XXX. It has almost 1000 calories if you mix it with 16 ounces 2 percent milk. They have different flavors so you can choose what is right for you. I also add peanut butter with vanilla and put it in a blender.
I hope this helps you. I will remember you in my prayers.0 -
You say you were onwaikiki5 said:I had! nasalpharyngeal
I had! nasalpharyngeal carcinoma so it is different from yours. But I did have the peg tube for 6 months. I am almost a year out of treatments so eating has been a challenge. I would recommend going to GNC stores and trying Mass XXX. It has almost 1000 calories if you mix it with 16 ounces 2 percent milk. They have different flavors so you can choose what is right for you. I also add peanut butter with vanilla and put it in a blender.
I hope this helps you. I will remember you in my prayers.
You say you were on Cisplatin, did they give you Emend to prevent or lessen the nausea vomiting? Hope your feeling better and there is a lot of good advice here. I have radiation and chemo scheduled in a couple of weeks, I will get the Cisplatin. Denis0 -
Hi Victor, did the emendvictor53 said:yes i got cisplatin during
yes i got cisplatin during chemo everyday mon thru fri on weeks 1,4,and 7 of my 7 weeks of rads and i did the emend i think it was 3 pills the first3 days of chemo mabe one was the day before.Havent read of anybody else getting it my way
Hi Victor, did the emend help with the nausea and vomiting?0 -
Wow! Another nasopharyngeal cancer patientwaikiki5 said:I had! nasalpharyngeal
I had! nasalpharyngeal carcinoma so it is different from yours. But I did have the peg tube for 6 months. I am almost a year out of treatments so eating has been a challenge. I would recommend going to GNC stores and trying Mass XXX. It has almost 1000 calories if you mix it with 16 ounces 2 percent milk. They have different flavors so you can choose what is right for you. I also add peanut butter with vanilla and put it in a blender.
I hope this helps you. I will remember you in my prayers.
Waikiki5, you're the first nasopharyngeal cancer patient I've run across on boards. I also had j-peg, but for about a year. I've already posted this under another topic about feeding tubes. My most important piece of advice (besides "don't fight your doctor") is to keep trying to swallow or eat while on the tube. I couldn't (not even water), and when we started talking about removing the tube, I had to have speech therapy to help me "relearn" how to eat!
I still can't eat like I used to, but I'm here to gripe about it - and that's good!0 -
I hope it helped you as much as me!denistd said:Hi Victor, did the emend
Hi Victor, did the emend help with the nausea and vomiting?
Emend was a lifesaver for me, but I also took two other anti-nausea medications before chemo (my cicplatin treatments, not the other two I had). I don't want to think what it would have been like without it!0
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