I moved jbentnwolfe here to start a separate thread.
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jbentonwolfe
Member
Member # 1353

posted June 03, 2004 05:48 PM
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HI, I JUST SIGNED UP TODAY, AND I DONT KNOW EXACTLY HOW THIS WORKS, I HAVE READ SEVERAL OF THE LETTERS AND THEY ARE ALL VERY ENCOURAGING. MY MOM WAS JUST DIAGNOSED WITH SALIVARY GLAND CANCER TWO WEEKS AGO. SHE IS 58 YEARS OLD AND NOT A DRINKER OR SMOKER, SO FAR IN TWO PAST WEEKS SHE HAS BEEN THROUGH TWO NEEDLE BIOPSYS, TWO OPEN BIOPSYS, PEG TUBE, AND THEY ARE GETTING READY TO START HER ON CHEMO/RADIATION. I WOULD APPRECIATE ANY ONE OUT THERE THAT HAS HAD SIMILAR CIRCUMSTANCES TO REPLY. THANKS

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jbentonwolfe

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Posts: 1 | From: san diego ca | Registered: Jun 2004 | IP: Logged

Hey J...

Welcome to the site! It sounds like your mother is off and running. Hopefully someone around here will have dealt with salivary gland cancer and can provide you with details. All of us have been on the patient or caregiver side of head and neck cancer and much of the treatment is the same. Good luck and your mother is lucky to have you by her side through this.

Ed

Jbentonwolfe: Welcome to our site. It is now yours as well. My cancer was not exactly the same as your mother's, but it sounds similar. Mine was primary in tonsil, but needle biopsy was the first attempt (2x) to establish cancer for sure. After a bunch of other things, such as scans, sonidirected needles, etc., I ended up with a peg, chemo and radiation treatment and eventually surgery to be sure a recurrance in the same place would never occur because all of the tonsils and lymph nodes near the secondary tumor weren't there anymore. This sounds similar to what your mom has in front of her.

As noted, we all react differently so she could skim through this with little difficulty or she could have a more difficult time. It just depends on how she reacts. I pray she has an easy time of it and little ill effects. Regardless, she can get through it and conquer this disease. As a caregiver for her, your support will be invaluable at those times that it gets to be heavy going for her, so hang in there and keep your mom hanging in there also.

Ok, thanks to all of you for your replys. It is all so positive! I really did not know how to start this all so I hope I am in the right place now. Is anyone familiar with the subliminal dvds and things that are for sale online? I would be happy to buy them if it is worth it. I must mention that my mom has a very nervous stomach and get sick very easily so I am looking for options that help her through the chemo with little sickness. I know there are new meds for nausea out there but are there other alternatives? And thank you to whoever moved me to the right place, I didnt know how to do it.

Hey jbentonwolfe,
Welcome! My hubby really didn't get too sick from the chemo/he had Taxol and Cisplatin and they always gave him meds first to help. He felt some nausea, but never really threw up from it. He did get some acid reflux (which he had trouble with before the cancer) and they gave him drugs for that also. Your mom is so fortunate to have you...I don't know how anyone gets thru this alone. We have a great support system and I pray to God everyday for Dan and others on this board...I will keep you and your mom in my prayers!

Debbie

I am a year younger than your mother. There are really no alternatives for anti-nausea medications. The best prescription one is Zofran. There is another one similar to it in effectiveness, ask your doctor. People have tried other things to augment the meds like peppermint oil drops and such. Nausea (and pain as well) management should be part of the team treatment protocol.

Like Kirk said - she may breeze through this -we all respond differently to treatment.

I didn't, was sick a lot, but still survived. It was probably more disconcerting for my wife than for me.

I'll add my welcome to this site - I've found it very helpful in dealing with the treatment and concomitant side-effects... as a cancer 'treatment' survivor (dealing with the treatment is the tough part so far), I found that the best anti-nausea drugs were Kytril (granisetron HCL) and Prochlorperazine Maleate (aka Compazine (sic)). The former I would take daily during my radiation/chemo (Cisplatin) treatments and also right before each dose of adjuvant chemo (Taxotere). The latter I would take anytime I would get and acidy stomach (mainly toward the end of my Taxotere chemotheapy) and it would take away the nausea very quickly. Nothing completely eliminated the nausea... but in my case, these helped - I found it good to have a supply of the Compazine on hand... obviously, check with your Mom's medical and/or radiation oncologist...

I'll chime in here too and say welcome - we're glad you found us.

Before they administer your Mom's chemo they should be giving her pre meds. Some start the night before, some are infusion immediately before. These will help quite a bit in controling her nausea.

I also found that Compazine works very well.

Good luck and please feel free to ask any questions.

Dinah

Well since all of you have gone through this, do you feel that you should be agressive with the doctors, or go with what they recommend? So far I am getting extremely frustrated. The feeding tube has given her nothing but pain and problems. We spent several hours at the er the day after it was put in and they detected nothing. The next day she went back to the doctor who put it in and it was too tight and there was an infection around it. so they put her on antibiotics but didnt seem to help. today she went back to the doctor and they are saying it is a viral infection, took her off of the previous antibiotics and gave her something stronger. I thought having this in and done would be a good thing before starting treatments, but it seems like a real hassle. did anyone else encounter these problems? thanks jw

JW,

My tube hurt really bad at first and when I called they kept telling me it shouldn't hurt. I have had it out even for a while and it still hurts in the same place. It was stitched in and had these wierd metal "toggle bolts" (as they called them). It was cinched down really tight and literally was tearing the skin. They said it was at an unusual angle because of the size and location of my stomach. I had all the stitches cut out and half of the water let out but I still hurt from time to time and I got full immediately whenever I tried to feed through it. They told me it was infected and we went a round of anti-fungal and antibiotics. It is important to keep it flushed at least daily and use peroxide around the wound at least daily.

Mine was a pain and hassle, too, and I was glad to finally have it out. I lost about 70 lbs total from August to January but I have gained back 25 lbs since March. I think your mother and me are exceptions and generally there are little or no problems related to the tube. Be patient but be dilligent. If you can isolate specific issues with the tube, the doctors or people her can help point you towards resolution. You could ask for lidocaine in the tube and put it around the skin short-term to ease the pain.

Ed

I too had many problems from the PEG tube, mostly infections due to stiches the doctor put in to hold it in place. After the stitches were taken out I used tape to hold it in place. I agree the feeding tube should be the last thing you have to worry about. Keep bugging your doctors. I'm having no problems now after 8 months.

Lynn

Hi there, mom is set up for the start of treatments on monday. they are going to give her chemo through a "pic" tube inserted in her arm and send her home with it for five days. has anyone used this tube and how does it work, is it painful? or easy. I am keeping her up to date with all of your responses. thanks so much!

Hi,

My daughter Heather had a double PICC line. It is an IV line, but it is placed higher in the arm and can remain in place longer than a regular IV line. Heather's was right above her elbow, was securely taped in place and was not painful. We used the PICC for several medications over the course of several months and had very few problems. If used just for a periodic 5 day course of chemo, I wouldn't anticipate any problems.

Heather also had a lot of trouble with her PEG tube. I suspect it wasn't inserted properly, but have no hard evidence. Even though she had trouble with it, though, she depended on it for nutrition.

I recommend you be very aggressive with the doctors. Don't take for granted that they always know the best course of action. I did plenty of research and more than once I "educated" Heather's doctors on certain points. Her surgeon told me I should continue my research and continue asking questions because doctors only have so much time available and it is impossible for them to keep up with all the changes in medicine today. And after all, they are only human and err just like the rest of us. So keep on top of things and keep them on their toes!

Rainbows & hugs,
Rosie

thank you rosie, you made me feel good today.
went and saw my mom at the hospital today and she is going great so far. they gave her the anti nausea meds and they seem to have worked so far. she did the iv drip of platinum and 5fu (?) and will go home tomm. she even asked for a hot fudge sundae today. i get different answers from all of the hospital personnel and doctors, some say there will be nausea after a few days and some say not. some say it depends. i cant see how, if your throat is raw from radiation and you cannot eat, how can you throw up? could you potentially choke? i am hoping that wont happen.
she said the pic tube which was placed in the arm was run all the way up the shoulder and into the chest? that seems pretty invasive.
i really do appreciate finding this site and all of your responses! at this point you are the only people i have to talk to that know what is going on.

You can definitely throw up! I sure did - to the point of polishing my teeth like glass! Antiemetics are not 100% effective and you must experiment with what works the best. Zofran, for instance, is mainly only effective for 3-5 days -then you must switch to something else. Because of the nausea I used compazine suppositories and they worked fairly well. The nausea usually gets better the further away from chemo but the secretions and radiation can add their own spin to it.

I also found that I reacted worse to chemo as time went on. All of us react differently -that's why the doctors and nurses can't give you a clear answer.

It is really disconcerting to caregivers to witness this but a certain amount of it is to be expected. Just make sure that nutrition lost is made up for. Guard against dehydration.

I don't remember "choking" but it was no picnic.

Hi all, I have a new question for today.. my uncle who took my mom home from the hospital today and has her over at his house, said she can not be at her house because she has a cat, and they carry too much disease and with her immune system down it can cause problems. i have never heard anything like that. she has one cat, that is indoor only, has all of her shots and is groomed regularly. what do you think? is this true?? thanks again jw

by the way, thank you gary for your response. she was very nauseas today. then they gave her some anti nausea meds and it made her really tired. omg, will this subside after the five days? i hope so.

I have not heard specifically of any issues of having cats around even though they have been known to transfer some viruses and diseases to people. I have two dogs and I believe my two teenagers are a bit more unsanitary than the dogs . If you mother is close to the cat, it may do her good to have her pet around her. I made it a point to keep the kitchen and bathrooms extra clean and changed the sheets often when the blood counts were low.

Most of the anti-nausea meds made me tired, too, and I sure tried enough of them. I went with suppositories, too, since I couldn't keep anything down.

Things will get rough for a period of time but they will improve. As Gary says, it is very hard on the caregiver especially. Hang in there.

Ed

I have heard that pregnant women shouldn't be near a cat's litter box, but other than that, I don't know. Sorry not much help on that one.

I think a PICC line runs into the chest because it goes directly into one of the arteries. That is why it can stay in place for a long time. Regular IV lines put in the hand and wrist area need to be changed every few days. They can get infected more easily and the veins can collapse if left in too long.

Some people are given a Mediport or Hickman. They are similar to the PICC in that they go directly into an artery, but they are placed in the chest instead of the arm. It is more complicated to place them and usually requires a trip to the OR to be placed by a doctor, whereas a PICC can be placed by a member of an IV team.

Brian, if my memory is foggy and I have messed up any of the facts, please correct me.

Rosie

I have 4 Bichon Frises who were with me 24/7 practically and I never had any issues with them. Cats are probably ok. Especially since it is an indoor cat. Little kids are probably more dangerous to the immune system. I don't believe that dogs and cats have very many humanly transmittable diseases.

Hi all, we are going for 4th radiation treatment at noon today. i am going to drill the doctors about this cat thing, i am not believing it either. i have reccommended the suppositories like you all have said that sounds like a pretty good idea if she cant keep the oral ones down. the one thing i cant really understand is, if you can not eat because your throat is thrashed due to the radiation, how in the world can you throw up? and if you are using the feeding tube completely to nourish, can you throw up from that too? must go now, but as always i really really appreciate your responses, i am a daily reader now, and to all posts, not just my own. jamie

Hi Jamie,
First off I HAD to eat since I didn't have or want a PEG tube. I took morphine tablets for breakthrough pain prior to eating or drinking and sometimes used "pink magic" swish & spit to anesthetize my throat and cut the pain from swallowing. My throat was a burned out and blistered disaster area. I lost 60 lbs but am doing fine now.
It was no walk in the park. Everytime I threw up I knew I had to make up for it. It took all of my energy to acheive this. I still ended up in the ER twice to be rehydrated.
I HATED Ensure and Boost (made me gag) and got by with Carnation instant breakfast and milkshakes. Cold things seemed to work better. It was an unhappy time - thank God that it's passed -and it will pass.

Of course from all of the pain meds (including Fentanyl (Duragesic) patches I also had severe constipation, which by the way, also causes nausea. It also interupts homeostasis which contributes to dehydration and malnutrition -a real catch 22.

It's a toss up which was worse - the radiation burns and blisters or the constipation. My medical team could have done a better job managing the constipation.

The doctors recommended placing an ativan tablet in the compazine suppository and I did that as well.

IMHO you need to worry more about humanly transmittable bacteria. We kept the food prep and bathrooms disinfected as best we could. We used OTC products like Lysol and also a 10% solution of bleach and water (recommended by CDC) for disinfection. Beware of contaminated areas that are "choke points" such as banks and supermarkets (because everyone has to go there), door handles, etc. I used to wear gloves when shopping and still carry waterless disinfecting hand cleaner in my car. God knows what little snot nosed kid was putting his infected hands all over that shopping cart you're pushing around. My immune system totally crashed so this was not some kind of paranoid delusion. I avoided public places (even church) for quite some time. I would not allow my designated drivers (to radiation) to drive if they had sick family members. I asked others to open doors for me so I didn't have to touch the handles. I also asked people who were sick to stay away. If I sensed that I was in a room with a sick person I would leave immediately. Went I went to the SS office I waited in my car and made them come and get me - that place was FULL of sick persons -probably helped with my SSDI claim -who knows?. It worked well - I haven't had so much as a head cold the entire time - even now.

You may want to pay closer attention to the cat box. Animals can transfer worms so I wouldn't let them be licking any open wounds.

Hi,

I have three indoor/outdoor cats which were with me the entire time I was recovering from surgery and during radiation. The cats and I spend about 20 hours day curled up together from day 9 of radiation to the end. I don't know what I would have done without their warmth and company. If she is capable of taking care of herself, she would probably rather be home with her pets.

Take care,
Eileen

Gary you are awesome! you made me laugh. i am making a copy and giving it to my mom. i think the constipation is something that could be handled alot easier, i guess.
well, she looks and feels miserable. she said it was like having constant morning sickness, and geez i know how that is, i had it for nine months, both times! today we did the radiation and she came home, took a shower, took an anti nausea and fell asleep for about four hours. they just knock her out! sat the 5fu chemo pack will come out and i hope then she will begin to feel a little better. i just found these things called queasypops, in a magazine a sort of homopathic lolipop i am going to get them tomm and give them a try.
also i am wondering about lotions,balms etc for the radiation spots, i was doing my reading in the doctors office and there is a great magazine called "coping with cancer" they have lots of things it it and i ordered several samples already. we are going to hit on something that will work!
see you all tomm.. jamie

oh and eileen, thanks for the kitty input, i did talk to my uncles daughter today who said her dad likes to make up his own rules, so maybe that is not even true!! i also work with a lady who went through stomach cancer with her mom and they had six cats in the house all of the time. i think you are right, animals are wonderful when you are sick...

Jamie,

Usually the radiation place has samples of stuff that can help the skin. Where I went they had some organic aloe extract and Aquafor. I used both off and on and they really helped. When my neck was literally a bloody mess, I used this stuff called Domeboro. You mix the powder in water and soak a wash cloth in it and apply it to the burned area and it cleared up after one 15 minute treatment. It was at the oncology pharmacy over the counter. It works great on sunburn, too.

Ed

Jamie,

Usually the radiation place has samples of stuff that can help the skin. Where I went they had some organic aloe extract and Aquafor. I used both off and on and they really helped. When my neck was literally a bloody mess, I used this stuff called Domeboro. You mix the powder in water and soak a wash cloth in it and apply it to the burned area and it cleared up after one 15 minute treatment. It was at the oncology pharmacy over the counter. It works great on sunburn, too.

Ed

I don't know if I was just lucky, or if it was the Biafine cream they gave me a prescription for the first day of radiation, but I never had anything worse than a sunburn. used the cream three times a day, and washed gently with mild soap. - The day I came home from the surgery, my cat waited for me to settle in bed, then sat on my stomach purring all evening, and basicly staid there through my recovery + for hours every day during radiation. Only problem I can see is that the hair does irritate my throat now, have to use the vacuum cleaner a lot. Leena

People's responses vary from little skin reaction to severe burns and sloughing off of necrotic and dying tissues as in Uptowns case and my own. These external manifestations are treated as any severe burn, and because of the open wounds like fire burn victims people have to be on the look out for infections. Aquaphor coated my neck for months after radiation and I would have to say that the worst time was the first month after the end of treatment. The differences in response and severity are directly related to the volume and duration of exposure. No two cancer patients have exactly the same amount, hence the wide variety of comments about what they experienced.

Well guys, here is my sunday update, the home health care nurse came and gave her an iv bag yesterday because she has had a terrible week with the 5Fu chemo. she was oh so sick. couldnt keep anything down and was getting dehydrated. so yesterday they took the chemo off and today she feels a little better, she has been able to eat a few small things and said she had a fruit popsicle today that was the best thing she has ever eaten. The only wierd thing is she must be really weak or something because she fainted when she got up to go to the bathroom, and she had to sit in a chair in the shower to get cleaned up, she says she feels dizzy and weak, but is cheering up a bit. I got her some tapes to listen to from Dr. Weil. I love him.. Tomm is radiation treatment number six and so far her throat is not burned yet and the skin thing is yet to come, but i have ordered some samples of different products and my aunt bought some pure aloe vera gel. the nurse said she usually gives some samples of creams but is out, i will keep bugging her about that. Again I always appreciate your responses, why do you think they use the chemo/radiation combo? could you not get results from just radiation alone? my aunt had breast cancer last year and opted for the radiation alone and so far so good. the oncologist says the chemo makes the tumor more responsive to the radiation, my feeling is she had it so bad with this, she is not going to want to do it again the next time which should be the end of july.??? any thoughts talk soon jamie

Hi Jamie,
It wasn't until almost the end of treatment that I had any issues with the skin on my neck and it manifested itself as a mild sunburn. There is a wide range of reaction to radiation. DO NOT put anything on the skin prior to getting treated (the skin should be dry). It may act as a "bolus" and intensify the radiation effect. Any lotions should be applied just after treatment. The stuff they gave me was called Radiacare - it was mainly aloe vera as I recall -it might have had vitamin E in it as well.

I had dizzy spells a lot and almost fainted many times dealing treatment and shortly after. These are fairly normal things. This is a hard treatment - worse than the disease in many ways. I also had to sit in the shower, especially towards the end of treatment. She may have to plan her day around the shower, picking the time of highest energy level to take one. Energy management is critical when in treatment.

She is very early in the process and it usually gets worse as time goes on, infact the turning point won't be for some time AFTER they have stopped radiation. It is normal to get pretty beat up from this. I know it is disconcerting but it is a reality. The best thing for you to do is read up on it, learn how to watch for different symptoms like thrush, etc. Keep a daily log of food and liquid consumption, medications taken, what worked and what didn't. Stay in touch with the doctors or advice nurses with any issues, fears or concerns. Take detailed notes at all doctor visits. Talk to the nutritionist weekly. Try to keep a positive attitude. It will not help her if you are falling apart or panicking.

The Cisplatin is an enhancer for the radiation. It oxygenates the tissues and makes the radiation more effective. I did not have the other chemo so I have knowledge to share. The nausea should get better the further away she gets from the infusion. Not all days will be awful - some will be just fair.

The book I have recommended lately, "Living Well With Cancer" covers all of these things (and much more) in great detail. My wife this book and gave it to me and it was invaluable IMHO. There have been some recent posts describing the book in detail and how to order it. If you order through the OCF link to Amazon , the site a gets a small percentage which helps Brian keep the door open. See the thread in introductions "your advice on "city of hope", or another centre in los angeles".

Jamie,

As the Medical Oncologist explained to me, the 5FU is used to decrease the tumors and micromets while the Cisplatin enhances the radiation, as Gary explains above. Many people have mentioned no bad effects from the 5FU but I really struggled. I received 3 bags of fluid daily from the first week of chemo. My primary difficulty was creatinine and since Cisplatin has shown to be hard on the kidneys, they couldn't keep giving it until my creatinine came down and fluids was about the only way. I then got dehydrated and that caused a lot of dizziness when I stood up. I tapered down to 2 bags a day from about 2 weeks post treatment and this lasted for almost 4 months. I found that regular hydration was the best overall treatment for me. Dehydration really compounded my side effects from everything.

My wife often joked about the 5FU being called that because you were F.U. for 5 days. I had a friend on it continuously for almost 5 months and had little or no discomfort the entire time.

Ed

Hi Jbenton.

I am failry new here myself.I know absolutely nothing about oral cancer and just seem to ask questions stiil. I'm not very helpful yet...

My best friend's husband is why I am here. He was recently DX with Stage 1 oral cancer. On the tongue. He was a heavy tobacco chewer.

I pray the best for your mom and for your strength and love for her.

I also used BIAFINE but unfortunately wasn't given it until my neck was very red and couldn't turn my head. It was very effective and I never blistered. It is not supposed to be used on open sores. It was very new at the time I had radiation. Actually, I think the literature said you were supposed to start using it before you had radiation to help prevent the burns and continue after each treatment. It is a deep wound dressing and therefore good on healing all those scars from the neck dissections. Ask your radiation dr. about it.

Take care,
Eileen

I also used BIAFINE but unfortunately wasn't given it until my neck was very red and couldn't turn my head. It was very effective and I never blistered. It is not supposed to be used on open sores. It was very new at the time I had radiation. Actually, I think the literature said you were supposed to start using it before you had radiation to help prevent the burns and continue after each treatment. It is a deep wound dressing and therefore good on healing all those scars from the neck dissections. Ask your radiation dr. about it.

Take care,
Eileen

One other thing I forgot to mention DO NOT SCRATCH IT (your neck that is) no matter how itchy it gets. They gave me this prescription cream called Desonide 0.05% and it helped with that problem. Any kind of moisterizers would probably work but I would avoid oil or petroleum based ones.

5FU - that's pretty funny Ed!!! Where DO they get the names for these things anyway?!?!

ok guys, you may have told me before, but now how about the inside of the mouth, the burning and discomfort? the nurse told her to mix baking soda,tsp salt and water and rinse, sounds harsh. i think the nausea has somewhat subsided, however she couldnt sleep last night because of the burning. she finally asked for pain pills today and when i brought them to her she was fast asleep. let me know... thanks

I can't even imagine rinsing with anything with salt in it during the post Tx phase. Even a 1% saline solution burned like heck. All the more power to you if you can get away with it.

I rinsed my mouth with baking soda, salt, and water after treatment. Believe it or not it didn't burn. A lot of other things did. I think it helped the healing. Mary Lee

Hi Jamie,

I used a solution of baking soda and water which seemed to help soothe the inside of my mouth. Tell your mom to hang in there - it does get better with time.

Nancy

Hi everyone. My mom is back in the hospital. this is just kicking the heck out of her. what is unusual is my cousin who went through something similar last year, and is clean! told me his doctors said that to do chemo and radiation at the same time is too hard on the person, so they did his chemo first and then radiation, are they doing too much at once? her mouth is raw and infected (thrush) and she is low on potassium and white cell count. when i saw her after work, they had about five bags of stuff hooked up and she cant swallow or anything, she is so miserable. this is really starting to scare me. any words of advice at this point? thanks jamie

Jamie,

I know how tough this must be on both you and your mother. Studies have shown that chemo during radiation helps the radiation. I spent some time in and out of the hospital during the chemo phases, too, but only because I thought it was better to do what was most effective.

I hope the doctors are able to ease the pain and deal with the complications and side effects. I pumped in 2-3 bags of fluids at home for many months. Try to not worry and keep asking the doctors questions until you have peace of mind. They will assume you have no questions if you don't ask. The can explain everything they are doing to the point you regain confidence that they are trying their hardest to kill the cancer beast.

Hang in there, it will be tough for a while.

Ed

Jamie-

Hang in there...for my husband it started getting bad around the 3rd week. Everything the others here have told you about chemo/radiation at the same time is what we were told...and my husband is now cancer free...so, though it was "hell" we are both glad it was done that way. This is especially true for my husband because he did not have a neck dissention, because they found the cancer after his surgery. The chemo was not only to help the radiation work better but to catch anything that had spread into the lymph nodes.
My husband had the worst reaction to treatment that the cancer care center had ever seen. We are not sure why... and as everyone tells you here ...everyone reacts differently. My husband found the Aquaphor and Biafine to be helpful and yes, make sure it is all washed off and that your mom's neck is clean before radiation...it will make the reaction worse. Unfortunately my husband developed 2nd and 3rd degree burns from his upper cheeks to his upper chest area. The physical therapists that treated him when he was hospitalized (the week all radiation & chemo ended) were GREAT! They put Silver Sulfadiazine Cream USP 1% (referred to as silvadene cream) on his skin...this is a prescription medication that they put on burn victims. It was amazing...my husband said it feels cool going on and though we changed it several times a day...removing it with gauze soaked in saline solution...he developed NO scars and his skin is beautiful! It healed in 2 weeks...we were utterly amazed at the quickness of the healing. I hope your mom doesn't have to deal with any of this, but just in case...ask about that cream.

As far as the ulcers in the mouth...my husband's were horrible. He had to eat via his PEG tube, even for water, for 6 months. The baking soda and water solution worked great to clear out the "gunk" and help with the irritation...salt made things worse and really made the "dry mouth" issue unbearable. He also used carbonated water to get the really thick "gunk" out of his throat...for some reason it didn't hurt.

I hope this helps a little. I am also in Southern California, so if you want to send me a private email I will give you my phone #. I don't mind receiving calls any time of the day or night!

Sending lots of prayers and love...

Lorie

Happy 4th of July to everyone!! my mom was released from the hospital yesterday, she wanted to go. looks like the white cell count is back up to normal, still a lot of pain in the mouth but she has several things to put on it. They finally gave her a pain patch! but she doesnt like it. She said yesterday she really wants a cheese enchilada, but cant swallow. things are looking better, now we have to see what comes next in the treatment, whether or not they will do the chemo again in two weeks or not. ps lorie, i emailed you.

Does anyone know where there is a local support group here in San Diego? My mom would really like to get involved with one and so far we have not be able to locate anything. thanks jw

I told her what you said Ed, i would get the enchilada but she is afraid it will burn. plus she says everything tastes metallic. i told her what i had read about sprinkling lime juice on things, but again that sounds like it would burn.
several issues going on here, the radiation machine at the hospital consistanly breaks down and she either has to come back or skip it. i think they need a back up model!
when she was in the hospital they found the pic tube was clogged so they took it out and the rn at the hospital put in a iv in the other arm which now has a huge blood clot in it. she has had shots for that but it is swollen. and lastly, now they say she is anemic and they want her to go in tomm and have a blood transfusion. this is just unreal, is she a case or does this stuff actually happen to other people?
they put off the chemo until next monday and that may be the last one, they say the tumor has shrunk down to almost nothing which is great news!! she is really weak and miserable but alot better than last week. her hair started falling out so she had it shaved. but she still puts on her make up everyday. i can not wait until this treatment phase is over and she can start healing. thanks jamie

Jamie,

Although a lot of what you are describing happens often, it seems like your mother is getting more than the regular dose of problems. I would have suspected the medical team staying closer to the rbc and giving her Procrit before she got so anemic she needed a blood transfusion. Also, from past experience with my mother, I believe I would have requested a mediport before a pic line because of the flushing and maintenance.

There's no doubt the treatment is horrible, we can all attest to that. Do everything you can to keep your mom as pain free as possible. It will really help the outlook for her. Also, she has to keep hydrated or the side effects will be tougher.

Ed

I want to update, mom is finished with her second chemo treatment as of tomm. she did really well this time, the nurse gave her some samples of some antinausea meds (200.00 ea pill) and they seemed to work. the doctor is not on vacation this time and monitoring her much better. three more weeks of radiation and that should be it, yeah! she is tired and weak but much better.
ok, Ed I have a question, I was reading the posts from SLL and I never really thought about it before, I thought the forgetfullness, and different personality was due to the drugs but I never really thought and I dont think they told us that the chemo or raditation would make permanent differences in the brain. is this something that gets better over time or is it that damaging? does it really make you change? I have noticed she looks older but I thought it was just from being tired. learn more everyday. thanks jamie

Jamie,

I am glad mom is doing better! I know how tough this must be for you. I want to reiterate how fortunate she is to have you through all of this.

I can't really answer your questions about temporary or permanent issues from chemo and radiation. I do know that my short term memory is struggling and I start my day by remembering one street that keeps slipping my mind. I ask my wife regularly what the name of the street is and she thinks I am messing with her but I just can't remember. I have a little struggle with reasoning, too. I worry that it isn't getting any better but the doctors keep telling me they don't think it is from the chemo or radiation.

I think the intensity and toxicity of the treatments will make anyone look older. My hair even turned gray, at least what was left of it. I feel like I have aged 10 years in the past year.

Be sure and tell your mother how beautiful she is when she even brushes her hair. It will mean a lot to her.

Ed

Jamie,
I am so glad your mother is feeling better. I hope the next weeks will pass quickly for her - and you.
I did not have chemo with my radiation, but unfortunately things got worse week by week until the end and 2-3 weeks after the end of radiation. Your mother has been through so many problems, I hope the tiredness & weakness will be the worst side effects from now on (I hope this came out right). I don't know about the effects on memory - there was something about an article on chemo and memory loss on this forum recently, but I think it is more likely that the problem is with the stress from the other side effects + cancer itself. I have always had a problem with forgetfulness, I don't think it is any worse than at other stressful times in my life.

Ed, you are right about telling her she is beautiful and encouraging her to try to look her best when she feels up to it. My sisters did the sweetest thing for me when I was really down. I had told them about the Frankestein scar on my neck and how it made me feel. They sent me (from Finland) a package with ten softest and most beautiful silk scarves in all different colors - at the time when I was sick and tired and miserable, the beauty and the FEEL of those scarves was just what I needed. I still go and play with them when I feel sad. And I have a scarf to match every blouse I wear, and then some.

Leena

Hi everyone. my mom made it through the second round of chemo last week, and did rather well. we thought it would be ok, and then this week i guess as a residual effect, her mouth is sore and raw and inflamed. can hardly speak and cant drink even water. she is on pain patches tho. any suggestions on helping ease the pain?
eight more radiation sessions and it is done i hope. she is ready to get back to her life and shopping, i know that is what she misses most. but the positive thing is she is saving money right now ha!
i was reading a lot of posts last night while i was at work, and noticed a name of a med for helping the saliva production, anyone can you tell me what it is and does it work?
tomm we are going to look for a suction device, she had one in the hospital and really enjoyed it.
thanks again for all of your positive replys and encouragement.
when she is up and around i will introduce her to the website and she can continue. i have printed her out many of the responses to read.
jamie

Jamie,
I'm glad she is getting through this. I used a humidifier during my treatment and for months afterwards, it seemed to help me.
Take care,
Minnie

Jamie,

I am glad your mother is reaching the final stretch of radiation treatments (and chemo). There are two drugs that have shown positive results in stimulating saliva production, Saligen and Evoxac.

Ed

ed, back a while ago, you suggested domeboro for the bloody neck mess. well i went and found it today at the pharmacy, box of 12pks now, the box doesnt give very good instructions, says mix 1,2,or 3 pkgs with 16oz water. so i mixed some up for her today and put 2 pkgs in to stay in the middle realm. how did you mix it? also we got the aqua stuff too and some emu oil spray from the radiologist office as samples.
other subject, she needs something to reduce the saliva, not make more, that will probably come later, but right now it is so thick, she gags on it. my brother is trying to create some time of suction device, like they use at the dentist to get it out of there. saw one online but it was like 800.00 unless the insurance would pay, dont want to go that high. really since this is very common, someone should invent a home one. so anyway, anything to lessen or make the mucus less thick?
thanks jamie

Jamie, the mucous is just something that happens, drives you crazy, then stops. For me it was 21 days and it was gone. I wiped it out with Puffs brand tissues, which are the softest and strongest. I wish I had stock in them because I went through dozens of boxes. If you do a search, you will see that some people have had success with some cough preparation, I believe. I am sorry that I do not know the details of that. One last thing, I slept in an elevated position, and rolled up gauze to put in the "gutters" of my mouth. This absorbed the gunk long enough for me to get a little sleep. Tell her it WILL end.

Jamie, Let me second Joanna's post. The mucous is a nasty side effect of the rad (I think) that starts toward the very end of treatment, gets worse for a while, then tapers off. I'm 5 months post rad and still have a little of it from time to time. It clears with a cough or two and a sip of water. Even when it was the worst, I slept sitting up and got up to spit and choke and cough every hour on the hour, or even on the half hour, for a few weeks. It's part of why we get so tired during treatment. But as Joanna says, it does end. I found that it made me vomit, so if she is just choking and gagging, she is either lucky, or it may get worse in the future. But it does go away so tell her to hang in there, there is a light at the end of the tunnel.

How about the PILL form of Robittusun? I say pill b/c I tried the liquid version during my thick saliva phase and saw stars from the burning.

Hang in there. It does get better.

Sabrina

Jamie,
When the mucous was really bad the hospital prescribed me a Yankauer suction device ( similar to what the dentist uses to suck up water in your mouth). I kept it by my bed at night and by my easy chair during the day and it was somehow easier than going through so many tissues.

Danny G.

Jamie,

Danny is right. The suction machine is great. It was a real help to Heather. Her insurance company paid to rent one.

Joanna's suggestion of using rolls of gauze to soak up some of the gunk was also a big help.

Rosie

yeah,,,i finally found people who understand the suction device, now i just need to find one. my brother is trying to create some invention right now but where or where can i find one, and if the insurance pays it would be great! there has to be some personal ones out there for use at home that are not really expensive. any ideas, let me know....thanks to all of you. i look forward to reading this site every chance i get, funny how things change, i used to come home from work and do email and play games, now i go on this site to talk to my "new friends".
jamie

jbentonwolfe, Hello I have one I got it when I was released from rehab. It is called a DeVilbiss suction unit made by sunrise medical. I got it thru the praxair healthcare services. They deliver all my medical supplies month to month..Maybe you can look in the san diego area for health services and go from there. I would be lost without mine..Since I cannot get the flem up and out of my mouth,,without my tongue...ALways Vicki Lynn

thank you miss vicki i will start searching the web and local medical supplies today...

Jamie,

I used 1 packet with 16 oz of water. I put an old wash cloth in the Domeboro solution and after wringing it out, I just laid it gently on the area for 10 minutes. The next morning it was unbelievably better.

Check with your oncology nurse for a home healthcare agency they work with and start there. Give them your insurance info and see what they can do. Even the place that we started with that didn't take our insurance only charged us what our insurance paid. That was a big relief.

For the thick mucous, I used Tussin or Robitussin liquid. Anything with Guiafenesin will work. Beware of the liquid if your mother does not have a PEG tube. It will burn beyond belief. My (straight) hair is still curly. They tell me it is from the chemo or radiation but I really believe it was the Robitussin down the throat! There are also pill forms called Humibid but they are pretty large pills and I couldn't swallow them until recently. I rinsed with water and either used kleenex or spat them in the waste basket (when no one was looking, of course). I also used a humidifier when sleeping to help my dry mouth and thick mucous.

Ed

WELL, TODAY WAS THE FINAL RADIATION TREATMENT. MONDAY SHE GOES FOR BLOOD WORK AND THEN RECHECK IN TWO WEEKS. THE MASS HAS GONE DOWN TO ALMOST NOTHING, SO HOPEFULLY THERE WILL BE NO SURJERY. RIGHT NOW SHE IS SO MISERABLE. HER MOUTH IS INFLAMED AND THE DOCTORS DONT KNOW WHY. NOW IT IS TIME TO START HEALING! YEAH.

All our prayers are with you, May God Bless you and make this the end of the cancer....Vicki Lynn

Her mouth is inflammed because of the radiation treatments. Her doctors should be giving her advice and medications to soothe her pain from this.

Jamie,

I am so excited to hear your mother has reached another milestone! Congratulations.

Ed

Hi everyone, it has been pretty busy, with all of the follow up drs appts. everything looks good so far. the cell count is good, and the tumor is not there as far as they know, they will still do a cat scan to make sure. i guess it should be gone with all of the radiation blasting that took place. it was really wierd the effects on her skin didnt start until the last couple weeks and then it was raw, and oozie and bad...
next i want to get her into a hyperbaric oxygen chamber, my cousin said he did it and that is when he started feeling the best.
ok here is my newest question.... right now she has pretty much lost her voice, it is like laryngitis. now the chemo has been over three weeks and radiation two. she is asking how long it will take to get her voice back, her throat is still sore and she trys to talk but it is difficult. i told her to ask the dr. today but as we all know, he will not know as someone that has been through this!! anyone out there, experienced this? thanks jamie

Jamie, The rule of thumb has always been one month of recovery for each week of radiation. However, I have to tell you that my rad Dr. told me that was not accurate. He told me it would be at least two years before all of the side effects were healed and I could say that I was now as good as I would get. I can say it has been 6 months since my treatment ended and I still have a sore throat, my voice is still hoarse, and my mouth is still sore. So there you have it. I figure that as long as I am improving, and I have been improving since treatments ended, I'll take it and not care how long it will take until everything is as good as it will get.

Not to worry about the voice. That was something nobody thought to warn me about. It lasted the better part of a month when all I could manage was a whisper. Lots of fun trying to talk on the phone! After a few weeks I would be whispering and suddenly a word would sound loud. Then more whispering. It gradually went away and I have had no problems since. I notice that I had lost the upper register of my voice, but just now, a couple of years out, I am regaining the high notes. Bottom line, this is just one more thing to wait out, but it WILL end!

Jamie, people react differently and I was once very worried about my voice too particularly I am a school teacher. I had my oncologist reassure me all the time that my voice box was not damaged and it took time to have my voice recovered. For about 1 or 2 months, I could just whisper and felt really frustrated. Things however did improve and gradually I could talk quite normally in about 3 months post treatment. Of course there is still the hoarseness even today, almost 3 years post diagnosis due to a lack of saliva. My voice varies every day but can communicate with others without problem. My voice sounds the clearest when I am crying and talking at the same time because my tears are around my voice box, giving it a kind of lubrication. Funny! So don't worry, things will get better gradually and slowly.

Karen.

I had a scope done on my lungs July 12th and lost my voice again just like I did when I got done with radiation. Does anyone know how long it will take this time to get my voice back? I finish radiation April 28, 2003 and I have no salvia.
Mary Lee

Hi there, seems like it has been forever since i have been here. I have set my mom up on the website to read everything I have. She has moved back to her own house now, was staying with my aunt. Her voice is back, but she still is having choking problems and unable to swallow much, first the doctor says try eating, then they tell her if she eats and it goes down wrong, she could get pneumonia?? what is that? so she is still using the feeding tube, but i can tell she really wants to get back to eating regular food. Hair is slowly coming back in. I took her to the local octoberfest today and she got in some walking and sunshine. Only problem now is she is soooo bored! she is used to working, and going out with friends and shopping, now it seems like she doesnt have much interest in those things. Waiting for an MRI scheduled for Nov. to see if she will need additional surgery after everything else. if not then she can probably go back to work.
Got Dan's pictures from the LV trip. looked like fun, maybe next time I can get her to go to meet some of you. I hope she will start posting all of her worries/questions and get to know all of you. Talk soon. Jamie

Jamie,

The type of pneumonia the doctors are concerned about is aspiration pneumonia, which can occur when solid particles (like food) go down the wrong way and end up in the lungs. This can be an issue especially with older people who have swallowing difficulties. If she hasn't been swallowing for some time, it will take awhile to get adjusted again, so she will obviously need to start with easy, soft foods and work very slowly to get the muscles working properly again.

I hope she can start to get some strength back so she feels like getting out and about -- but it does take time.

Cathy

Hi Jamie,

I am glad to hear things are improving for your mother. I have been thinking of both of you and hoping for the best. Direct her this way and maybe collectively we can help make the recovery a bit easier for her.

Ed

I have given her the website and my password to get in, i think she read a few last week and i had her look at brian hills, video but she is not really computer savvy, i will keep pushing her as i think it is the best way to get positive reinforcement. she tried going to a local support group but it seemed like it was kindof depressing for her.
on to that aspiration pneumonia,, is there anyway to prevent it? or are you taking your chances when you eat. i want her to start trying different things, but that is a worry. thanks jamie

Jamie,

Unfortunately aspiration pneumonia is something that many of us will battle because of the swallowing issues from treatment. They can do studies to try to identify how impaired swallowing is plus it will improve with time. Speech pathologists are useful in developing a plan to relearn swallowing to maximize the remaining functioning of the throat.

I am glad to see you back and especially happy to see your mother is doing good. Give her my love.

Ed

Hi,
Your mom can alleviate the constipation somewhat by using a version of Boost or Ensure that includes fiber. You can also use a soluble fiber like Benefiber that can be dissolved in water and ingested through the feeding tube. Getting this under control can make a big difference.
My radiation oncology nurse recommended Aquaphor to use on the skin as it became burned from the radiation. I used to glop it on every morning and night and it seemed to improve things. It helped my head stick to the pillow!
Take care, Sheldon

HI EVERYONE, SORRY IT HAS BEEN SO LONG. BUT I HAVE BEEN BUSY. I HAVE SOME NEW QUESTIONS PLEASE, MY MOM ENDED HER RADIATION TREATMENTS IN THE END OF SEPT. WHEN SHE WAS DONE, SHE COULD SWALLOW WATER AND LIQUIDS MINIMALLY. NOW A MONTH AND HALF LATER, SHE CANT DO ANYTHING BUT ICE CHIPS. SHE IS DEPRESSED, FRUSTRATED AND NOT GETTING ANSWERS FROM THE DOCTORS. I TOLD HER THAT THE HEALING PROCESS PROBABLY TAKES SEVERAL MONTHS BUT SHE WANTED ME TO GET SOME INPUT FROM ALL OF YOU, DID YOU HAVE THE SAME PROBLEM? I WENT TO THE ENT WITH HER LAST MONTH AND HE SAID THAT THE RADIATION CONTINUES AFTER IT STOPS AND THAT NOW THERE IS EDEMA, SWELLING AND IT JUST NEEDS TO HEAL. ANY WORDS OF ADVICE?? THANKS JAMIE

Jamie, The recovery is sometimes slower for some, it sounds to me like she is right on track time wise. She will likely start to see improvement soon. Perhaps a specialist in the area could evaluate her swallowing and see what could be done to help. Some people need dialation to make the esophagus larger after treatments.

The edema is also a normal after effect. There are gentle massage techniques to relieve that as well. Lymphedema therapy is a specialty, ask her doctor for a referral to a trained lymphedema specialist (usually a physical therapist will have this as an added specialty)

This it the worst time in her course of treatments. Please reassure her that everything you mention is quite normal and WILL start to get better soon.

Jamie, my doctor's, particularly the rad doctor, told me the side effects can last up to 2 years. That the full use of all of my faculties, taste, swallowing, sore throat, deep voice, etc, could take up to 2 years to repair themselves as much as they will ever be able to do. So tell mom not to worry too much as she is rounding the corner and on her way to getting well. Will pray for her comfort and improvement soon.

Jamie,
It sounds to me like your Mom is about to turn the corner. Remember the old saying that it's always darkest just before the dawn.

In my own case, the side effects of radiation peaked at about 8 weeks after the last exposure, then things started improving rather quickly. The burns on my neck (and in my throat) started healing up, which led to increased comfort, and improved swallowing. The muccousitis cleared up, the exercises that the speech/swallowing therapist gave me started to take effect, and overall my quality of life started to improve.
Telll her to hang in ther, improvement is just around the corner.
You'll both be in my prayers

Chuck

Jamie,

I am glad to hear you are busy, provided it is some time for you to catch up on things that were pushed aside for a while now. A real paradox of the treatment is that in order to eat and swallow you have to eat and swallow but you can't. It really makes it difficult to get back into the swallowing thing because the body has to learn to swallow in spite of the damage to all the muscles used for swallowing. Practice will make it better. It hurts at first but the more you swallow the easier it gets. I could not swallow ice and still after over a year it seems to stop at some ledge about 1/3 of the way down and then the cold just burns. I can drink milk shakes but eating ice cream gets painful. I can feel the lump where it stops but can't do much about it. I have just eaten my 3rd meal today without water. I had blueberry pancakes and bacon with water afterwards. It is hard for me to believe that 13 months after the end of radiation this is the progress that has been made.

Get your mother to try and swallow something. I started with milk and moved up to spaghetti noodles and then with sauce. Water was actually more difficult for me than anything else. Work the muscles. There is a great cookbook for people with swallowing issues and it explains all the muscles involved. It makes sense after the damage from radiation one would struggle with swallowing.

I hope your mom turns the corner soon.

Ed

For some reason water is more difficult to swallow than thick/semi fluid.In my case, I could take congee throughout and after treatment but when it came to soup, it took me quite a while drinking it without choking. Ed, I understand how you feel when discovering that you can eat without help from water. For a Chinese meal that usually goes with rice and a lot of veggies, this experience can really happen even earlier than 13 months post treatment since the rice is soft and veggies especially melon type can help to get your food down more easily. Depending on what I have for dinner, sometimes I don't need any sip of water for the whole meal but with dry food like meat or chicken, every bite goes with a small sip of water. So naturally, my diet now is directed to more veggies and less meat, which I think is much healthier. Eating or swallowing isn't a problem to me now-- 3 years post treatment. So things can get better slowly and gradually.

Karen.

Jamie-

Please ask her doctor if you can get a referral for a speech pathologist and/or physical therapy. They can help her not only with gentle/lymphatic massage like Mark suggested but they will help her learn to retrain/adjust to her atrophied or damaged muscles by compensating with different ones. The dysphasia (swallowing difficulties) tends to increase some of the anxiety that goes with just the recovery process (I work with patients that often have difficulty swallowing and sometimes they get full blown panic attacks). Like there aren't enough different things to adjust to after treatment then have to struggle with the difficulty of "if I swallow - where's it going to go?"

Karen? Did you have issues with the rice? I seem to recall Ed having a tough time and more than once having it go one of three places (the nose, the trachea or the esophagus). Scared me more than once. He still can't talk while sitting at the table eating. Something about it seems to throw the muscles off and work the way they're supposed to with the opposite function/intent. ARGH! Fretful for us almost as much as him!

Hang in there Jamie! Its kind of neat that your mom asked you to ask the real experts (the cancer surviors themselves)! Wish her well for me and tell her I am so pleased at her progress to date.

Susan

Hi Susan, it depends on how much water you add to the rice when cooking. If it is soft, there isn't problem especially if I take a mouthful of rice with other food like melon or soft veggies. If the rice is a bit 'hard', I may need to take some sauce or soup to get it down. I did have problem when I was still fresh from radiation and so I had taken congee for almost 6 months. When I dine out now in Chinese restaurants and if they have both rice and congee, I still order congee. Easier to take.

Karen.

Hi, as you can see i havent been here for some time. everything was looking good and the doctors all told my mom that it looked like they had gotton everything from the chemo and radiation so they didnt need to do the neck dissection. well, yesterday she got a call with results from the four month followup pet scan and the doctor says there is something that looks suspicious. omg here we go again. so any ideas from anyone? they have to do some more tests but would like to schedule surgery asap for the dissection. she is worried about getting back to work. (h yeah a side note, from the radiation treatment, her esophugas(?) had shrunk up to the size of a pin hole, so we have gone in and had about 6 dialations in the past two months and now it is the size of a nickel and she is starting to be able to eat some soft foods but still has the feeding tube.)has anyone out there,or know anyone who has had a set back this quick? is this something that sounds really bad? she is just getting somewhat back to normal and now we dont know what is going to happen. thanks all jamie

jbentonwolfe, welcome back. Sorry your mom has had this problem raise its ugly head again. Some of the members who have had recurrances I'm sure will comment. I'm one of the lucky one's, so far, and have not had any additional issues. Please let her know she's in my thoughts and I pray this isn't a recurrance, just a suspicious shadow caused by the rad. Extra tests will tell the story. God bless.

Hello again Jamie, scans can have false positives, in fact it is fairly common with PET scans because many things besides cancer can show up (infections for instance). Several people have had that happen. I'll hope for the best.

Hello Jamie; Please don't worry in advance. Suspicious cells are just that until they are positively identified. I had some "suspicious cells" that turned out to be scar tissue.
That being said, I did have a recurrance fairly soon after my rad Tx which necessitated an extended neck dissection two months ago. My prognosis is poor (the docs say) but until someone decides to pay me for time spent worrying, I think I'll just enjoy this particular time of being cancer free, and deal with the other stuff if and when it comes along.
I wish you peace and calmness as you continue to be such a wonderful caring supporter to your Mom. She is truly blessed to have you.
All the best,
Fran

well, it looks as if the doctor is pretty sure it is cancer and they want to schedule surgery for next week. problem is they have to do a test on the cartoid (?) artery which it was initally wrapped around to see how they can do this. i know a long time ago when i read alot of survivor posts, there were some people with reoccurances soon and long. is there anyone out there who had the same experience in the same place and how did it all work?

jb, check out DebbieDomer. Her husband had a tumor that was involved with the carotid artery. She may be able to give you some advise. I have not seen her posting lately, so you may have to send something to her email which you can find under her profile.

Here is the newest update, and I would totally appreciate any response on this matter. mom is scheduled for surgery on fri @ 7am. they say it should be 8-10 hours. they are also saying that there is a swollen lymph on the right side, so they are cutting both sides, they are also putting in a tracheotomy ??? is this normal? and they are moving some muscle tissue from the breast area to the damaged area of the neck for muscle mass and blood vessels. sounds much more complicated then we thought. they have also said that according to the scans, they do not think it has spread, but once they get in, if they feel they cannot remove the tumor site, they will close her and send her home? this is very disturbing to hear. i know many of you have had the neck dissection. does any of this sound familiar? thanks so much jamie

jamie, I had a right modified neck dissection after rad/chemo. It took about 3.5 hours, but I didn't have any muscle replacement. I didn't have a trach, but I only had one side done. I was discontinued on the first surgery due to the pathologist not able to confirm no cancer on the spot biopsies that were taken from various parts of my mouth and throat. They brought me out of it and sent me home. Had to reschedule again and a second time as the surgeon threw out his back the day of the second schedule. Finally had it done and it was no big deal. Again, I only had one side done and didn't have a trach or muscle tissue transplanted. Hope it all turns out OK.

Jamie,

During my surgery I had a trach put in place but I also had my tongue removed, both sides of neck dissected, peg tube placed, and stomach muscle removed to rebuild floor of mouth so I sort of had "one stop" surgery. The trach didn't hurt or anything - it was more of a nuisance/inconvenience and I was more than happy to bid it farewell after sporting it for 8 1/2 months. Good luck to your mom and know that we're here for you.

Hugs, Nancy

Well, the worst news possible this morning. They started the procedure, the trach went fine, after three hours we thought things were rolling along and then they called and said they had opened up one side of the neck and the cancer has spread to the "chest area" whatever that means. I just came to pick up my daughter and brother to tell them and will be heading back to the hospital. so they did not continue with the surgery and they will give us more details later. now we are going to have to look at the facts...are there alternative therapies? is there anything else that can be done? help please.....jamie

Jamie, how my heart aches to read your post. It really does feel like a large heavy door slamming in ones face when you get news so hard and unexpected.
That wonderful positive attitude which has kept you asking questions and advocating for your Mom is your most powerful tool and therapy as well. Keep challenging those docs; get another consult with a medical oncologist if you can. I believe there is always something that can at least ease the way ahead. Quality of life is a big deal for most of us...we usually don't get to set the time frame. It is amazing what people can recover from..this forum is full of those stories.
You and your Mom will be in my closest thoughts as you journey forward through this further challenge.
Blessings,
Fran

where can i go to find out more about radiation?

There are several places but I would start here. There are numerous members who have endured radiation and have a good understanding of how it works.

I remember when Harry first started radiation and people kept asking me was it XRT or IMRT. I had no clue. But I asked at the hospital and the people here in this forum explained to me the differences and what I should know about the different side affects that are caused by each.

You can also seach this website and through the archived messages for information.

If you need further information you might try Google searching using the terms above. (XRT & IMRT)

I am sorry to hear about all that you mother is having to endure.

I wish you all the best.

Cindy

I did a little research on line last night on loma linda university and they talk about Proton radiation? I have ready many of the posts here, has anyone been told they had the maximum amount but then had more? the proton seems to target only the cancer and not the healthy tissue around it. mom may be released to tomm and then she will have to start thinking about what she wants to do.

Jamie,

I am really sorry hear your news. I'm sorry I can't remember but how much radiation has your mother already received? I hate to be the bearer of bad news but from what you relayed over the past (almost) year, she may not be a candidate for more radiation as their is a maximum amount an area can take. If it were isolated she may be able to have a more directed type (i.e. IMRT). I am still hoping for the best possible news for you and your family.

Ed