Looking for advice
Some questions:
Doc says 6 weeks of daily radiation with chemo. Says it will kick my butt, give me a wicked sore throat and make it hard to swallow. But that I should otherwise be fairly ok. Anyone have real experience with this? No fluff. Let me have it.
I have been reading a bunch about nutrition and cancer. No sugar, white flower, raw veggies, ....; doc says forget all that for now. Pour the Protien and calories to your body and get ready for the fight. Anyone have experience with this?
He told me it could take 1 to 2 YEARS to fully recover from the treatments. Can any of you long timers explain what he means?
It sure is good to be able to bounce these questions off of real folks in the same boat as me.
Thanks,
Mike
Comments
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radiation
I am not a long timer and my radiation was more directed higher (my sinuses and palate, upper jaw, and a little of my tongue). I had 30 treatments...daily for 6 weeks, excluding the weekends.
here is what I learned:
- radiation makes you very tired and worn out...not at first, but very quickly.
- it hurts...not the procedure, but after a couple of weeks sores can form...they hurt.
- tell your doctor if you have any pain...pain makes it harder for your body to heal...pain meeds will make it better.
- you will need to eat a high protein diet while having radiation...this will help your body heal as well.
- if you start to feel even the slightest bit of depression...tell someone.
- after your treatment, it takes a long time to heal. the radiation kills the cancer cells, but it also fries normal healthy cells that are nearby. they have to be destroyed to help you become cancer free or at least NED (no evidence of disease). then once you are no longer in treatment the effects will linger. for me, it was a couple of weeks. My worst day was about 5 days post my last treatment. for me, it helped to remember that the pain I was going through was for a reason and it would end. Each time I was in pain I would remind myself why I was going through this...for me it was to watch my children grow older, to watch them have children.
- If you exercise, keep it up. if not, try to walk a little every day. I went and saw my regular physician (a cancer survivor) and he recommended trying to exercise as much as possible before treatment and for a few minutes every day while in treatment to help keep your blood flowing...which aids healing.
- eat what you like right now...soon you will probably be on a liquid diet. Your taste buds may be affected by the treatment...depends on where the radiation hits.
- you will lose weight...gain weight now. I gained 10 lbs before my surgery...lost 20 with surgery, lost another 20 with radiation, and if I don't' watch what I eat now..I keep losing weight. I am 2 months out and can not eat the same variety of foods I could before...my mouth is very sensitive. I can't eat anything too hot, too cold, too spicy (hot), or with too much spice (things like pepper, basil, etc). only the rare person will gain weight during treatment.
- I was told to worry about proper nutrition after treatments are over...it is important to get a lot of calories and a lot of protein in during treatment. I liked high protein boost. there is also a product called Scandishake (made by axcan) that gives you a lot more calories per serving which I used when my sores were at their worst. you mix each packet with whole milk. to compare it to boost...you would need to drink 6 to 8 boosts per day vs 3 of the scandishakes...when it is hard to swallow, those scandishakes were the only thing keeping me from losing too much weight...you lose too much, then your treatment gets delayed...a good incentive to not lose too much!
-you will have a mask made. you will find out if you have problems with claustrophobia. I didn't, but they have medications that you can take if you do. do not be afraid to tell your doctors about any symptoms you have. If you try to tough it out, then you are just putting yourself through needless pain or discomfort. even if it seems like a stupid question, ask it.
-I also used a product called Caphosol to help prevent mucositis...it worked for me, but it was expensive. I had a couple of issues when I didn't realize I could up the dosage on my own, but when I did, it helped a great deal.
-I got miracle mouth wash (a prescription that your doctor can order for you, also called 4-in-1, or any other names, it has to be made by a pharmacist), which also helped when I needed to eat.
-I used a mixture of salt (1/4 tsp) and baking soda (1tsp) in 1 cup of warm water to rinse my mouth when it would be sore, between Caphosol treatments.
- I also got a prescription lotion from the first day of treatment to help decrease the side effects to my skin (radiation burns) it was called radiaplex. I applied it three times a day with none of the applications being within four hours before treatment. I am fair skinned and I have a family history of skin cancer. normally they tell you to apply aquaphor...which will work, but it leaves your skin greasy. the radiaplex wasn't greasy, went on easy, and my skin really did well with it.
radiation is hard. there is no going around that. it will kick your butt, but your mental attitude is important too. it helped me during the post treatment period to remember that although the treatment takes longer than after a surgery, you still have to recover from the treatment after it is over...just like you would if you had surgery.
I am now two months out. I am able to eat a lot of foods that I wasn't able to eat right after treatment ended. there is still a lot of foods I am looking forward to eating, and I am stubborn enough that I keep trying to eat them, even if they hurt a little.
I tired to give you info without the fluff!
wishing you good luck.0 -
Everyone is Different
Hi Mike - I am not a cancer survivor, I'm a care giver. My father, age 75 has base of tongue cancer and it is his nodes as you describe. He is in the process (10 days left!) of 7 weeks of radiation, 5 days a week with one day a week chemo (cisplatin). I think the doctors tell you all the worse case scenario - it pays to remember that everyone is different and will react to things differently. My dad has 10 treatments left and has a little redness in his neck but so far no sore throat - amazing I think! He complains about things not tasting right and feeling bloated / heart burn etc. - has a bit of a dry mouth. But for what 'could' happen he has held out amazingly well. I have seen various degrees of side-effects described here. I think the main thing is to STAY hydrated and eat and swallow as much and as long as you can - shear will will assist you. I told my dad - like Yoda says... when it comes to eating and drinking there is no try, there is only do! If you do get a sore throat, there are pain meds you can take. On the diet, at my dad's age he is not switching to all veggies or raw meals! ha - however I guess you are what you eat, so good nutrition can't hurt. However, I will just note that my pharmacist husband insists that there are no real studies that actually prove (to any reasonable degree) that nutrition either impacts chances of getting cancer or chances of healing cancer. Bottom line during treatment eat what you can - as much as you can to keep yourself going. I imagine the 1 to 2 years refers to maybe salivary function coming back ... again, think best case. If my 75 year old - grumpy and glum Dad can do this - trust me you can!! ;-) Best of luck and gear up for the fight. Keep us all posted.0 -
Hi
My dad finished treatment 7 monthes ago for cancer on the base of his tongue and lymph nodes on one side. He did very well through treatments. He had 7 weeks of rads and 6 chemo treatments. He did get a sore throat off and on. He was able to eat through the whole time. He only lost 12 pounds. He has very few complaints now. Sometimes food will get stuck in his throat and he still has some mucus issues.
You can do this, it will be rough but then it will get better. Please never hesitate to ask your questions. My family coul dnot have gotten through this without the advice of the people on this site.
Pumakitty0 -
Good points so far.
Hi Mike. I didn't find this site until after rads, unfortunately. I used to say cancer kicked my **** but you know, that's not true. The radiation is what knocked me on my keister. In my situation my docs didn't give me enough of the worse case scenario. I didn't realize how painful it was going to be. I am not a whimp either. I never took anything stronger than an ibuprofen before all this crap.
I had a neck dissection left side, 23 lymphnodes and salivary gland removed. Unknown primary and three positive nodes. I did not have chemo. Some people go thru rads with minimal and very manageable side effects. I was hit pretty hard. Extreme fatigue. Mind blowing fatigue. Like I didn't have the energy to even roll over in bed. Forget about having to get up to use the rest room or get food. It was dibilitating fatigue. I'm 20 months out and better, but I only have a few hours of energy during most days. Sometimes I don't. I ended up with extreme nausea, despite meds. Thank God for my PEG tube because I was totally unable to swallow. my mouth and tongue were just one huge sore.
As for any food diet, throw that right out the window. You need to worry about getting calories any way you can. I ended up losing 40 lbs with my peg. I think a nutritionist is an important person to have on your team. When you atve done with treatment and at a good weight then you can think of diet change if you want to. With all the reading and research I have done I have decided to just eat everything in moderation. I still have problems swallowing so I don't really eat meats, but I still am a little too high in dairy because I need to gain and maintain my weight. I eat a lot of veggies and grains. Before I started rads I tried to prepare my immune system by juicing twice a day. (miss my juicing because fruits still burn my tongue). I tried to gain weight as well. I took a liquid immune booster and liquid vitamin right in my fresh juice. I had a doctor oz type green smoothie and a fruit/vegjuice every day in addition to my normal diet.
It sucked, I'm not gonna lie. Good news is I'm still kickin' and so are a lot of other survivors here. It is tough but doable. We are just a post away, night or day with whatever you need. A question or just to vent.
I wish you well.
Blessings,
Sweet0 -
Advice - telling it like it is...side effects are a PAIN
Mike,
I will pray for your surgery to go well.
EKDENNIE said much of what I would say. I made it through 3 rounds chemo cisplatin, dosetaxel and 5 FU then 6 weeks of radiation (30 rads) and it is recovery that is kicking my butt. I was disgnozed SCC right tonsil metastasized to lymph nodes on right side of my neck but they hit both sides with radiation 55 grys to left side and 70 grys to right side.
Doctors were right on when they told me difficulty swallowing and mouth sores. I still have mouth sores and some issues swallowing 6 weeks post treatment ending. As many have stated as well. I toughed it out without PEG / feeding tube and did upset the nutritionist and my doctors and lost 50+ lbs but managed to gain back some basicially a yo yo of weight loss weight gain then more weight loss which give me a total of 50 + loss. In my case losing the 50 lbs was not a hardship as I had excess weight to lose and am now at the perfect weight for my height so a most dangerous expensive weight loss plan. Now I am working on getting my life back. but ...back to your post.
be sure to get your doctors to:
1) write rx for caphosol, it is expensive but worth it I noticed a remarkable difference after I started using it and I only found out about it though the discussion board and research my sister did for me
2) write rx for magic mouthwash - it is a mixture of lidocaine, benedryl and maalox it is a miracle drug and the reason I could eat anything at times.
3) if you get thrush be sure to get RX for nystatin asap in fact see if they will write you an rx for it in advance.
4) for radiation if you have any anxiety get an rx for xanax. I am not a big fan of drugs or whould say pre-cancer I was not a fan of drugs but halfway through radiation week 16 or 17 I started having full fledged anxiety attacks and xanax was what got me though
5) listen to the experienced people on the blog (those with more experience than me ;-) as they really know this stuff as I learned lots from them.
6) hydrate hydrate hydrate - that helps with the mouth sores and swallowing. I did not drink all my water and I suffered the consequences dehydration and a stay in the hospital.
7) depending on your height a nutritionist can guide you on the amounts but high protein high calorie not wasted calorie healthy calorie.
8) greek yogurt / carnation instand breakfast added to most anything helps boost calories and protein and does down easy.
9) chew on ice chips / sugar free popsicles whatever to help with sore mouth because
10) you WILL HAVE THE WORST SORE THROAT AND issues with swallowing than you ever imagined.
I don't want to scare newbies but telling it like it is I grew up with a history of sore throats and strep as a child and adult but the pain from radiation is much worse..My doctor called it a 3rd degree sunburn in your mouth.
Finally, stay in touch and keep posting don't do what I did and isolate as that is the worst thing...those who have walked our shoes before us have so much to give and those new to H&N cancer have so much to learn..though I am done treatment I am still learning.
And utmost in my opinion STAY POSITIVE AS THAT IS WHAT HELPED ME THE MOST. along with my faith in GOD for others their higher power. I think my spirituality has really grown and gave me a greater faith in GOD and my religion by the way my church has been there for me since they heard about my diagnosis. I have to say this experience taught me who was really there for me in my life which friends, family I could count on when push came to shove. I even learned I had some acquaintenance who turned out to be better friends and some situations more there for me than my family was but then maybe it just scares my family since my family is 2000 miles away from where I live.
Anyway know that you are not alone and no matter how bad it is you have a family on this discussion board that is here for you to answer questions and to vent.0 -
Hi
welcome to the club - sorry you qualify for membership. I was diagnosed with SCC base of tongue, stage four, two lymph nodes involved in October 2009. I had the open biopsies (probably like what you're having tomorrow, except they also took a tonsil from me while they were in the neighborhood), then did three months of induction chemo, followed by seven weeks of radiation with chemo, with treatment ending last March. Turns out, one of my lymph nodes was stubborn, so I ended up having a modified radical neck dissection (removal of neck lymph nodes on one side) four weeks ago.
I was also diagnosed diabetic just after the cancer diagnosis. My doctors emphasized the need for me to get calories in; they were not concerned with what I ate, so long as my calorie intake was fairly high (even though I was overweight), and my protein intake was high. I, too tried to eat better as soon as I found out about the cancer and diabetes - this became very difficult, then impossible - I ended up eating whatever I could. At one point, chicken broth with crushed Fiber One cereal in it was my "good" meal for the day. I had to give up fresh fruits and veggies during chemo, then eating difficulties (mouth sores, radiation damage, chemo side-effects) eventually made it impossible for me to eat, so I relied on a PEG tube for nutrition. For several days, I'd have whatever food I could get down (processed puddings, cream of wheat, smoothies, etc), along with however much nutrition drink (a brand like Ensure, but for diabetics) I had to swallow to get in my calories, then using PEG feedings to supplement eating, until I became PEG-reliant. I was able to eat again a few weeks after radiation ended. Many people can go through treatment without a feeding tube. Some can swallow nothing whatsoever - I was in the middle - I got to a point where I could not eat food, but I was able to swallow water. I understood the importance of not "losing" my swallow, so I swallowed what I could - sometimes with pain meds.
Some days were hairy; some not so bad. We run the gamut here, from folks who got a sore throat and felt run down, but could work and eat to folks who not only could not eat at all, but were totally wiped out, suffering greatly, unable to care for themselves, and needing to be on very strong pain patches. the vast majority of us here were somewhere in between the two extremes. But even the ones who suffered the most say "It's doable".
Eat all you can while you can. I hope you can continue to eat throughout treatment, and understand the importance of eating, even if you have no desire to do so. And DRINK YOUR WATER. Keeping up with hydration and nutrition will really halp you get through treatment. Also, let your docs know EVERYTHING that's going on with you. We have wonderful meds available to help counteract most of the side effects you may experience. Do well. Keep posting.0 -
no fluff
It sucks. I had my treatments 10 years ago. From what I've read it looks like treatments have gotten a little better with side effects. Everyone is different. For me I had fatigue for a couple of years after treatment. I had to change the way I eat and drink. I have to drink every time I take a bite. Dry foods have to have gravy to help get it down. Still get a condition called Thrush once in a while which is an infection in your mouth. I also have chronic dry mouth which causes problems with eating, swallowing and the health of your teeth. A lot of foods and drinks burn my mouth such as spicy foods and soda and alcohol so I stay away from those. You learn to deal with whatever comes from the treatments because the only other alternative is to not have the treatments and die from cancer. I complain now and then but you adapt. Treatments are hard and from reading your comments it seems you have a supportive family which will help. Sorry you have to go through this but I believe I'm a stronger person today because of it. Good luck and best wishes,
Linda0 -
i concur nifty....everyone is different.nifty said:Everyone is Different
Hi Mike - I am not a cancer survivor, I'm a care giver. My father, age 75 has base of tongue cancer and it is his nodes as you describe. He is in the process (10 days left!) of 7 weeks of radiation, 5 days a week with one day a week chemo (cisplatin). I think the doctors tell you all the worse case scenario - it pays to remember that everyone is different and will react to things differently. My dad has 10 treatments left and has a little redness in his neck but so far no sore throat - amazing I think! He complains about things not tasting right and feeling bloated / heart burn etc. - has a bit of a dry mouth. But for what 'could' happen he has held out amazingly well. I have seen various degrees of side-effects described here. I think the main thing is to STAY hydrated and eat and swallow as much and as long as you can - shear will will assist you. I told my dad - like Yoda says... when it comes to eating and drinking there is no try, there is only do! If you do get a sore throat, there are pain meds you can take. On the diet, at my dad's age he is not switching to all veggies or raw meals! ha - however I guess you are what you eat, so good nutrition can't hurt. However, I will just note that my pharmacist husband insists that there are no real studies that actually prove (to any reasonable degree) that nutrition either impacts chances of getting cancer or chances of healing cancer. Bottom line during treatment eat what you can - as much as you can to keep yourself going. I imagine the 1 to 2 years refers to maybe salivary function coming back ... again, think best case. If my 75 year old - grumpy and glum Dad can do this - trust me you can!! ;-) Best of luck and gear up for the fight. Keep us all posted.
My dad is 68 and must be at about the same place in his treatment as your dad. My dad takes chemotherapy weekly and has two left and 10 rads. We saw the onc thus morning and she said he is doing amazingly well...much like your dad. While we have two weeks to go things could certainly change but I am so thankful for his tolerance of the treatment so far.
Like you mentioned...everyone is different and responds to treatment differently with varying degrees of side effects.
I definitely ditto the "eat and drink what you can". While that may not directly correlate with healing you definitely have to eat to be strong enough to get through the treatment. Dads onc did not want him to lose more than 10% of his weight.
eating enough is a challenge.
Loss of taste and dry.mouth have definitely been a nuisance.
We hear all types of stories. Just pray for strength to get through and know that chemotherapy has come a long way. They give lots of anti nausea meds prior to chemotherapy and it is available after chemotherapy should you need it.
Mike, as a caregiver make sure you have someone that will and can be with you when you need them. Keep your spirits up. I don't want anyone to think as a caregiver I am minimizing what you are going through. My dad and I prepared for the worst, said lots of prayers and take each day as it comes.
My prayers are with you and everyone else in thus.board. it is not easy even when the side effects are minimal....hang in there0 -
Thank youekdennie said:radiation
I am not a long timer and my radiation was more directed higher (my sinuses and palate, upper jaw, and a little of my tongue). I had 30 treatments...daily for 6 weeks, excluding the weekends.
here is what I learned:
- radiation makes you very tired and worn out...not at first, but very quickly.
- it hurts...not the procedure, but after a couple of weeks sores can form...they hurt.
- tell your doctor if you have any pain...pain makes it harder for your body to heal...pain meeds will make it better.
- you will need to eat a high protein diet while having radiation...this will help your body heal as well.
- if you start to feel even the slightest bit of depression...tell someone.
- after your treatment, it takes a long time to heal. the radiation kills the cancer cells, but it also fries normal healthy cells that are nearby. they have to be destroyed to help you become cancer free or at least NED (no evidence of disease). then once you are no longer in treatment the effects will linger. for me, it was a couple of weeks. My worst day was about 5 days post my last treatment. for me, it helped to remember that the pain I was going through was for a reason and it would end. Each time I was in pain I would remind myself why I was going through this...for me it was to watch my children grow older, to watch them have children.
- If you exercise, keep it up. if not, try to walk a little every day. I went and saw my regular physician (a cancer survivor) and he recommended trying to exercise as much as possible before treatment and for a few minutes every day while in treatment to help keep your blood flowing...which aids healing.
- eat what you like right now...soon you will probably be on a liquid diet. Your taste buds may be affected by the treatment...depends on where the radiation hits.
- you will lose weight...gain weight now. I gained 10 lbs before my surgery...lost 20 with surgery, lost another 20 with radiation, and if I don't' watch what I eat now..I keep losing weight. I am 2 months out and can not eat the same variety of foods I could before...my mouth is very sensitive. I can't eat anything too hot, too cold, too spicy (hot), or with too much spice (things like pepper, basil, etc). only the rare person will gain weight during treatment.
- I was told to worry about proper nutrition after treatments are over...it is important to get a lot of calories and a lot of protein in during treatment. I liked high protein boost. there is also a product called Scandishake (made by axcan) that gives you a lot more calories per serving which I used when my sores were at their worst. you mix each packet with whole milk. to compare it to boost...you would need to drink 6 to 8 boosts per day vs 3 of the scandishakes...when it is hard to swallow, those scandishakes were the only thing keeping me from losing too much weight...you lose too much, then your treatment gets delayed...a good incentive to not lose too much!
-you will have a mask made. you will find out if you have problems with claustrophobia. I didn't, but they have medications that you can take if you do. do not be afraid to tell your doctors about any symptoms you have. If you try to tough it out, then you are just putting yourself through needless pain or discomfort. even if it seems like a stupid question, ask it.
-I also used a product called Caphosol to help prevent mucositis...it worked for me, but it was expensive. I had a couple of issues when I didn't realize I could up the dosage on my own, but when I did, it helped a great deal.
-I got miracle mouth wash (a prescription that your doctor can order for you, also called 4-in-1, or any other names, it has to be made by a pharmacist), which also helped when I needed to eat.
-I used a mixture of salt (1/4 tsp) and baking soda (1tsp) in 1 cup of warm water to rinse my mouth when it would be sore, between Caphosol treatments.
- I also got a prescription lotion from the first day of treatment to help decrease the side effects to my skin (radiation burns) it was called radiaplex. I applied it three times a day with none of the applications being within four hours before treatment. I am fair skinned and I have a family history of skin cancer. normally they tell you to apply aquaphor...which will work, but it leaves your skin greasy. the radiaplex wasn't greasy, went on easy, and my skin really did well with it.
radiation is hard. there is no going around that. it will kick your butt, but your mental attitude is important too. it helped me during the post treatment period to remember that although the treatment takes longer than after a surgery, you still have to recover from the treatment after it is over...just like you would if you had surgery.
I am now two months out. I am able to eat a lot of foods that I wasn't able to eat right after treatment ended. there is still a lot of foods I am looking forward to eating, and I am stubborn enough that I keep trying to eat them, even if they hurt a little.
I tired to give you info without the fluff!
wishing you good luck.
Much. This helps a lot0 -
one or two other things . . .
ok about nutrition first . . . hubby's original doc pretty much gave Pat free rein to eat whatever he wanted before and after surgery. Even his second doc (and the hospice doc) said beer was fine because of all the calories it has. He drinks regular beer, not the light kind. One thing that his rad onco suggested, and one of his nurses in the hospital after his surgery as well, was a milkshake with full fat milk, full fat ice cream, and a couple of scoops of protein powder, weight gainer, or Carnation Instant Breakfast. As many as he wanted, as often as he wanted. He still has his PEG, and anything liquid or blendable that can be run through it, I run if he wants. Using the PEG on top of whatever he eats helps to keep weight, or in his case gain it. Get through all the treatments THEN choose whichever healthy diet works for you.
Another thing that will be brought up (if it hasn't already) is making sure you have a dentist or oral surgeon that understands the effects of rads. It will be suggested that any teeth you need pulled be done before, and it is very possible you may have tooth issues later. Rads can cause necrosis, tissue death, which can give you major problems with teeth. Speak to your rad onco and your primary onco about it.
Something else I have noticed when talking to other survivors that have had rads and chemo is the effects are felt mentally as well. Chemo messes with your body's hormone levels, so be aware of any emotional changes that just aren't you. I know you're a guy (ha ha ha - sorry couldn't resist!) but it's 100% cool to speak to a counseler, therapist, or anyone else you're comfortable with about this. If you're prescribed "brain meds" take them. Short term pain for long term gain
There are lots of great people here - drop a line whenever you need. 0 -
Fluffless
Hey Mike,
I just finished up treatment 3 weeks ago today. I did do 7 weeks of radiation and chemo and prior to that I did 3 rounds of chemo. I've had a bit more because I had metastases to multiple bone sites. I've done well with all the treatments and have experienced significantly less side-effects than most. I credit alot of this to the diet and nutrition that I had prior to treatment but especially to the diet and nutrition that I have had during treatment. Like you and most; my docs told me to not worry so much about what I was eating but to worry about calorie and protein content. This is horrible advice and I believe a betrayal of the Hippocratic oath that doctors take. Unhealthy food (processed sugar, non-organic, gluten loaded, animal based) is not good for us when we don't have cancer and is linked convincingly to actually causing cancer. This is strangely quite controversial in the medical field and even more strangely on this board. So, you will need to decide for yourself. I will tell you this; it is not convenient or easy to eat healthy and even more inconvenient while going through treatment. I have been completely dependent on the PEG tube for well over a month now and have been making my own organic, vegan, high calorie, high protein liquid meals to pour down it vs. the canned corn syrup junk that my insurance company paid for and sits unopened. Just read the ingredients and see if you recognize anything as being actual food. The first ingredient is almost always corn syrup followed by a list of chemicals. This is not good or healthy for a human body but especially so for a human body weakened by cancer and cancer treatment.
The treatments are difficult. Good healthy food will make them less so. Even so; radiation caused me considerable pain and most of it after I was done. The last couple weeks have been more difficult than all the rest. Progress can only be measured in weeks as days are up and down. Fatigue is overwhelming. Dry mouth is unreal. Emotional ups and down like no other time in my life. This has been the most difficult thing I have ever done. And; I have done it. It is doable. I have changed in so many ways that are wonderful as have my family and friends who walked through it with me. You will find this out as you go through it and it will be different for you.
I didn't see that you were getting a PEG installed? You should. I didn't want to and actually had a horrible side-effect that hospitalized me for 4 days when it was installed. Still; it would have been much worse to have it installed after I had started treatment and I absolutely have needed it. Swallowing was just not an option until recently and saliva is just a faint memory. Do get the PEG installed before you start.
Exercise; all you can without exhaustion every day. Walking is geat. Rebounding on a mini trampoline is awesome if even for a few minutes and can be done in your house on days where walking just doesnt' seem possible.
I don't want to overload you with info as I know that is happening already so feel free to PM me if you have more questions or if you just need to share with a cancer brother. You can do this. Stack the deck as much in your favor as you can. Cut out everything you don't need and load up on everything you do. Be gentle with yourself. Pray constantly. Surround yourself with love.
You're being prayed for.
Bob0 -
Thanks for the Post
Hi Mike,
Thank you for the question. This info is so very helpful to me as I am right behind you and getting ready for treatment. My Drs have not yet found the origin of the cancer and I just had a 3 cm metastisized scc tumor removed in a left lymph gland. Also had a tonsilectomy which tested negative for cancer. Waiting for the PET friday, had a tooth pulled Monday, had a chemo consult yesterday and I may begin 9 wks of cisplatin (1x every 3 wks) as well as 6 to 7 weeks of radiation sometime at the beginning of Feb. I thought the PEG was an option but the onc highly recommends it be put in now and she only had 1 patient make it through treatment without needing it. My wife and I were worried about muscle atrophy but the dr said it is usually temporary. A little freaked out by that process. We really don't know much and this discussion board is so helpful. I read all of the answers and although I may not have the same reactions just the recommendations for the meds are awesome. I wish you the very best and hope you are further along than we are in the coping department. My wife has cried more in the last month than in all our 30 years together. This board has been a life line for her and I as it is the only straight talk we get. Some of the info is hard to hear but at least it is info.
Best of luck to you! Stay strong and be positive!
Ron0 -
hi RonRon49 said:Thanks for the Post
Hi Mike,
Thank you for the question. This info is so very helpful to me as I am right behind you and getting ready for treatment. My Drs have not yet found the origin of the cancer and I just had a 3 cm metastisized scc tumor removed in a left lymph gland. Also had a tonsilectomy which tested negative for cancer. Waiting for the PET friday, had a tooth pulled Monday, had a chemo consult yesterday and I may begin 9 wks of cisplatin (1x every 3 wks) as well as 6 to 7 weeks of radiation sometime at the beginning of Feb. I thought the PEG was an option but the onc highly recommends it be put in now and she only had 1 patient make it through treatment without needing it. My wife and I were worried about muscle atrophy but the dr said it is usually temporary. A little freaked out by that process. We really don't know much and this discussion board is so helpful. I read all of the answers and although I may not have the same reactions just the recommendations for the meds are awesome. I wish you the very best and hope you are further along than we are in the coping department. My wife has cried more in the last month than in all our 30 years together. This board has been a life line for her and I as it is the only straight talk we get. Some of the info is hard to hear but at least it is info.
Best of luck to you! Stay strong and be positive!
Ron
I have been wondering how you have been doing. Glad to hear things are going - progress is a good thing you're spirits are great - awesome to hear the positivity 0 -
Thanksmswijiknyc said:one or two other things . . .
ok about nutrition first . . . hubby's original doc pretty much gave Pat free rein to eat whatever he wanted before and after surgery. Even his second doc (and the hospice doc) said beer was fine because of all the calories it has. He drinks regular beer, not the light kind. One thing that his rad onco suggested, and one of his nurses in the hospital after his surgery as well, was a milkshake with full fat milk, full fat ice cream, and a couple of scoops of protein powder, weight gainer, or Carnation Instant Breakfast. As many as he wanted, as often as he wanted. He still has his PEG, and anything liquid or blendable that can be run through it, I run if he wants. Using the PEG on top of whatever he eats helps to keep weight, or in his case gain it. Get through all the treatments THEN choose whichever healthy diet works for you.
Another thing that will be brought up (if it hasn't already) is making sure you have a dentist or oral surgeon that understands the effects of rads. It will be suggested that any teeth you need pulled be done before, and it is very possible you may have tooth issues later. Rads can cause necrosis, tissue death, which can give you major problems with teeth. Speak to your rad onco and your primary onco about it.
Something else I have noticed when talking to other survivors that have had rads and chemo is the effects are felt mentally as well. Chemo messes with your body's hormone levels, so be aware of any emotional changes that just aren't you. I know you're a guy (ha ha ha - sorry couldn't resist!) but it's 100% cool to speak to a counseler, therapist, or anyone else you're comfortable with about this. If you're prescribed "brain meds" take them. Short term pain for long term gain
There are lots of great people here - drop a line whenever you need.
The dentist suggestion is something I need to consider. Thanks. And I am pouring in the calories now and I like your recipe. Mike0 -
RonRon49 said:Thanks for the Post
Hi Mike,
Thank you for the question. This info is so very helpful to me as I am right behind you and getting ready for treatment. My Drs have not yet found the origin of the cancer and I just had a 3 cm metastisized scc tumor removed in a left lymph gland. Also had a tonsilectomy which tested negative for cancer. Waiting for the PET friday, had a tooth pulled Monday, had a chemo consult yesterday and I may begin 9 wks of cisplatin (1x every 3 wks) as well as 6 to 7 weeks of radiation sometime at the beginning of Feb. I thought the PEG was an option but the onc highly recommends it be put in now and she only had 1 patient make it through treatment without needing it. My wife and I were worried about muscle atrophy but the dr said it is usually temporary. A little freaked out by that process. We really don't know much and this discussion board is so helpful. I read all of the answers and although I may not have the same reactions just the recommendations for the meds are awesome. I wish you the very best and hope you are further along than we are in the coping department. My wife has cried more in the last month than in all our 30 years together. This board has been a life line for her and I as it is the only straight talk we get. Some of the info is hard to hear but at least it is info.
Best of luck to you! Stay strong and be positive!
Ron
Looks like you and I are in the same place. I won't be having surgery, but my treatments start next week. I have learned a ton out here. Let's stay in touch and help each other thru this. Mike0 -
Great Adviceekdennie said:radiation
I am not a long timer and my radiation was more directed higher (my sinuses and palate, upper jaw, and a little of my tongue). I had 30 treatments...daily for 6 weeks, excluding the weekends.
here is what I learned:
- radiation makes you very tired and worn out...not at first, but very quickly.
- it hurts...not the procedure, but after a couple of weeks sores can form...they hurt.
- tell your doctor if you have any pain...pain makes it harder for your body to heal...pain meeds will make it better.
- you will need to eat a high protein diet while having radiation...this will help your body heal as well.
- if you start to feel even the slightest bit of depression...tell someone.
- after your treatment, it takes a long time to heal. the radiation kills the cancer cells, but it also fries normal healthy cells that are nearby. they have to be destroyed to help you become cancer free or at least NED (no evidence of disease). then once you are no longer in treatment the effects will linger. for me, it was a couple of weeks. My worst day was about 5 days post my last treatment. for me, it helped to remember that the pain I was going through was for a reason and it would end. Each time I was in pain I would remind myself why I was going through this...for me it was to watch my children grow older, to watch them have children.
- If you exercise, keep it up. if not, try to walk a little every day. I went and saw my regular physician (a cancer survivor) and he recommended trying to exercise as much as possible before treatment and for a few minutes every day while in treatment to help keep your blood flowing...which aids healing.
- eat what you like right now...soon you will probably be on a liquid diet. Your taste buds may be affected by the treatment...depends on where the radiation hits.
- you will lose weight...gain weight now. I gained 10 lbs before my surgery...lost 20 with surgery, lost another 20 with radiation, and if I don't' watch what I eat now..I keep losing weight. I am 2 months out and can not eat the same variety of foods I could before...my mouth is very sensitive. I can't eat anything too hot, too cold, too spicy (hot), or with too much spice (things like pepper, basil, etc). only the rare person will gain weight during treatment.
- I was told to worry about proper nutrition after treatments are over...it is important to get a lot of calories and a lot of protein in during treatment. I liked high protein boost. there is also a product called Scandishake (made by axcan) that gives you a lot more calories per serving which I used when my sores were at their worst. you mix each packet with whole milk. to compare it to boost...you would need to drink 6 to 8 boosts per day vs 3 of the scandishakes...when it is hard to swallow, those scandishakes were the only thing keeping me from losing too much weight...you lose too much, then your treatment gets delayed...a good incentive to not lose too much!
-you will have a mask made. you will find out if you have problems with claustrophobia. I didn't, but they have medications that you can take if you do. do not be afraid to tell your doctors about any symptoms you have. If you try to tough it out, then you are just putting yourself through needless pain or discomfort. even if it seems like a stupid question, ask it.
-I also used a product called Caphosol to help prevent mucositis...it worked for me, but it was expensive. I had a couple of issues when I didn't realize I could up the dosage on my own, but when I did, it helped a great deal.
-I got miracle mouth wash (a prescription that your doctor can order for you, also called 4-in-1, or any other names, it has to be made by a pharmacist), which also helped when I needed to eat.
-I used a mixture of salt (1/4 tsp) and baking soda (1tsp) in 1 cup of warm water to rinse my mouth when it would be sore, between Caphosol treatments.
- I also got a prescription lotion from the first day of treatment to help decrease the side effects to my skin (radiation burns) it was called radiaplex. I applied it three times a day with none of the applications being within four hours before treatment. I am fair skinned and I have a family history of skin cancer. normally they tell you to apply aquaphor...which will work, but it leaves your skin greasy. the radiaplex wasn't greasy, went on easy, and my skin really did well with it.
radiation is hard. there is no going around that. it will kick your butt, but your mental attitude is important too. it helped me during the post treatment period to remember that although the treatment takes longer than after a surgery, you still have to recover from the treatment after it is over...just like you would if you had surgery.
I am now two months out. I am able to eat a lot of foods that I wasn't able to eat right after treatment ended. there is still a lot of foods I am looking forward to eating, and I am stubborn enough that I keep trying to eat them, even if they hurt a little.
I tired to give you info without the fluff!
wishing you good luck.
You did a great job. I felt like I was reliving my husband's experience. Hope you continue to heal quickly.
Skipper0 -
Good feedbackadventurebob said:Fluffless
Hey Mike,
I just finished up treatment 3 weeks ago today. I did do 7 weeks of radiation and chemo and prior to that I did 3 rounds of chemo. I've had a bit more because I had metastases to multiple bone sites. I've done well with all the treatments and have experienced significantly less side-effects than most. I credit alot of this to the diet and nutrition that I had prior to treatment but especially to the diet and nutrition that I have had during treatment. Like you and most; my docs told me to not worry so much about what I was eating but to worry about calorie and protein content. This is horrible advice and I believe a betrayal of the Hippocratic oath that doctors take. Unhealthy food (processed sugar, non-organic, gluten loaded, animal based) is not good for us when we don't have cancer and is linked convincingly to actually causing cancer. This is strangely quite controversial in the medical field and even more strangely on this board. So, you will need to decide for yourself. I will tell you this; it is not convenient or easy to eat healthy and even more inconvenient while going through treatment. I have been completely dependent on the PEG tube for well over a month now and have been making my own organic, vegan, high calorie, high protein liquid meals to pour down it vs. the canned corn syrup junk that my insurance company paid for and sits unopened. Just read the ingredients and see if you recognize anything as being actual food. The first ingredient is almost always corn syrup followed by a list of chemicals. This is not good or healthy for a human body but especially so for a human body weakened by cancer and cancer treatment.
The treatments are difficult. Good healthy food will make them less so. Even so; radiation caused me considerable pain and most of it after I was done. The last couple weeks have been more difficult than all the rest. Progress can only be measured in weeks as days are up and down. Fatigue is overwhelming. Dry mouth is unreal. Emotional ups and down like no other time in my life. This has been the most difficult thing I have ever done. And; I have done it. It is doable. I have changed in so many ways that are wonderful as have my family and friends who walked through it with me. You will find this out as you go through it and it will be different for you.
I didn't see that you were getting a PEG installed? You should. I didn't want to and actually had a horrible side-effect that hospitalized me for 4 days when it was installed. Still; it would have been much worse to have it installed after I had started treatment and I absolutely have needed it. Swallowing was just not an option until recently and saliva is just a faint memory. Do get the PEG installed before you start.
Exercise; all you can without exhaustion every day. Walking is geat. Rebounding on a mini trampoline is awesome if even for a few minutes and can be done in your house on days where walking just doesnt' seem possible.
I don't want to overload you with info as I know that is happening already so feel free to PM me if you have more questions or if you just need to share with a cancer brother. You can do this. Stack the deck as much in your favor as you can. Cut out everything you don't need and load up on everything you do. Be gentle with yourself. Pray constantly. Surround yourself with love.
You're being prayed for.
Bob
My wife started us down the clean diet path some time ago. She just wanted to get healthy. So we have removed most white sugar and white flour stuff from our diets already. On the meat front, we have moved mostly to deer meat processed to our spec so it has no fat and deer are grass fed by default. So what I have been weighing is do I fall back from that a bit and calorie-up? You have to admit it's faster and easier with not so clean food, ..... vs. Juicing veggies, pushing ...... I think the middle of the road is the right choice for now. I workout so I don't carry around a lot expendable calories for my body to draw down. So I am going to push them now. But I am going to try to push clean calories - like agave instead of sugar, whole organic milk instead of skim, wheat and grain breads, clean protien like ISO Pure, ... I really appreciate your input. I also agree with you that there is not very much discussion about the controversial aspects of the diet side on this board - except - this is where I learned about the book anti-cancer and beating cancer with nutrition. The first book is great. I think everybody in this spot should read it. Some of it is overboard, me thinks, but if you really want to know what you have and how the beast works, you can find it there I can't figure out if the second book is a good reference or a sales tool for Immunopower. I am obliquely connected to the web marketing world and you know the old adage - write a book and they will come. To be fair I have not read the whole thing yet. So, we'll see. Thanks again, be well.0 -
more tips maybe?mwellsg said:Ron
Looks like you and I are in the same place. I won't be having surgery, but my treatments start next week. I have learned a ton out here. Let's stay in touch and help each other thru this. Mike
I didn't see LGluatamine powder mentioned above. My husband used it a lot thru his treatment. He mixed it in water which was the only way he could get the water down. There were several posts on LGlutamine from a few months ago. Scambuster was the one who I think reported a lot of good things about it. My husband swore by it and recovered pretty well. He was able to eat (albeit very little) throughout. Last few weeks was pesto on soft bread.
My husband did have a PEG put in early in treatment but really only used it at the very end of treatment and a few days post treatment. I think post-treatment was the worst for his throat.
The good thing about the PEG was that I was able to mix up in the Vitamix whatever I could, mainly vegan (non-whey) protein powder, greens, fruit, vitamins, cocunut water (recommended by Sweetblood to keep up electrolytes, papaya nectar (had enzymes to help with the mucous). Then I would strain it and make it room temp. As Bob mentioned above, forgoing nutrition at this time my husband didn't think was a good idea. Since he couldn't swallow any protein powder by mouth, having the PEG was really helpful. He continued to eat as I said throughout the treatments cause the rad onc warned him about the fact that if he didn't keep swallowing, would be harder in the long run.
Regarding the non-whey protein powder. My husband tried whey protein powder (which is dairy based) and he swore that that caused more mucous. We used a soy based protein powder which he thought was better.
For pain meds, he didn't like the percoset so relied on the fentanyl patch. That seemed to work for him to manage the pain to a somewhat bareable level. He did have problems with constipation but I think that was his fault for not preparing enough ahead of time for the 2 chemo days, plus he hated prune juice unfortunately.
I think Joe managed the mucous by sleeping propped up with a cool air humidifier. He also used mucinex (aka Guaifenesin some over the counter brand).
Hope this helps.
S.0 -
welcomemwellsg said:Thanks
The dentist suggestion is something I need to consider. Thanks. And I am pouring in the calories now and I like your recipe. Mike
Patrick lost a lot of weight before his surgery - he weighed in at 103lbs the day of when he was about 140 before. He managed to gain back some before now, but has lost more. I understand wanting to only put in good stuff so for ice creams I suggest Breyer's, Ben and Jerry's, or Hagen Daas. Since a lot of grocery stores have organic sections, take a look at those too.
There is probably a whole thread dedicated to pre- and post-rad dental care. Glad I could help out. Keep us posted! 0
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