Posted By: Stacey A Question and Treatment Update - 12-25-2012 04:36 AM
My husband has 16 RT to go. He is 5'10" and started at 178-180 lbs. He weighs 170 lbs now. He is on nausea meds but he still gets sick (1x-2x day). There are many times that he can't keep the meds down that he takes 30 mins prior to eating (these are the nausea and pain meds that are intended to help him eat).

The RO told him today that he is developing mouth sores from the radiation bouncing off of his silver crowns or fillings and there is nothing they can do about that. Hopefully, that doesn't prevent radiation from reaching the BOT and other areas needing radiation.

He still has 16 RT and has been so extremely fatigued...it concerns me. He wants to talk to the Doctor AGAIN about removing his tonsils after this is over. Does anyone know if the tonsils are removed if that stops the chance of cancer occuring in that area of the throat?

Thank you!
Posted By: davidcpa Re: A Question and Treatment Update - 12-25-2012 02:24 PM
I am surprised, perhaps shocked, that those silver crowns were not replaced pre radiation with porcelain. Was this discussed?

Were his positive cancer cells tested for HPV?

Any chemo being given?

You need to get his docs to get the nausea and pain under control because as you have probably read it's only going to get worse over the next 6 or so weeks. No mention of a feeding tube but if that subject comes up discuss the nasal tube with his docs.

Where his he being Tx?
Posted By: Maria Re: A Question and Treatment Update - 12-25-2012 04:54 PM
Hi, Stacey,
my husband had the same problem with scatter from the radidation. Don't worrry about the radiation to the cancerous areas - that is getting there just fine.

In the case of an unknown primary, they should be radiating the best guess of where the primary is / was. You can verify with the RO that the tonsillar area was also zapped.

This was about the time when fatigue set in with my husband, too. It is a tough road, but I am sure you will get throught it together. Nutrition and hydration is key - you want to get the the TX as close to schedule as possible!
Maria

Posted By: PaulB Re: A Question and Treatment Update - 12-25-2012 06:08 PM
Although I never had it done, they may still be able to make wax or similar molds for the radiaion scatter. Someone on here or another blog, said their RO did it midway due to the same problem. Happy Holidays, if you can!
Posted By: ChristineB Re: A Question and Treatment Update - 12-26-2012 12:31 AM
Stacey, by removing parts of him throat, it wont stop a recurrence from happening. All it takes is one teeny tiny cell to hide from radiation to have a recurrence. Who knows where this could be hiding? Best to concentrate on getting all of his treatments now and putting the whole thing behind him. Your husband will slowly return to his old self, sure he could have some after effects and limitations. Most patients will return to a life as close as they can to what they had prior to getting sick.

Happy Holidays to you and your family!
Posted By: Stacey Re: A Question and Treatment Update - 12-26-2012 07:53 AM
He is being treated by Oncology Hematology Inc in Southern Ohio w/RT at Jewish Hospital in Kenwood, Ohio.

The MO told him to have a flouride treatment and have his teeth cleaned prior to RT. It was a very casual conversation. The MO said that if he had a cavity or needed a crown then my husbands jaw bone might be crushed...then they would have a major problem. He went to our regular dentists and they did one flouride treatment (no trays) and stated that if he had an issue that they would just shear my husbands tooth off level with the gum. Absolutely no one told us anything about the metal crowns or fillings being a problem. He had plenty of time too. He had surgery on 10/12 and they did not start RT til the last week of November.

Yes. His cancer cells are HPV16+ and I need to change my signature to reflect that.

The ENT said Chemo and he knew the cells were HPV+. The MO then said yes until the PET Scan came back. He said that the MO's there and at a Cancer Center (started by Minnie Pearl but it's named after her her real name not stage name) had all discussed his case and they did not think he needed Chemo because the cancer cells are HPV+. He also made this statement tho that we should not be surprised if this cancer doesn't change to Lymphoma. We then met the RO and he said that he did not agree with the Lymphoma possibility. He also told me privately that the MO should have never told my husband that he would survive this. My husband cried in relief after we left the office and thought this RT was completely preventive ONLY.

The RO has given him Zofron for nausea and my husband has migraines and I don't think he takes them. The RO gave him a mild steroid medication last Wednesday but my husband has yet to take a pill. The RO is incredulous and so am I. I know that he has been sick twice since (within 24 hrs) and he won't take it. The Dr told him that he would have to go on a PEG, that he had mild mucitis and it will be extremely bad in the future. He told him the PEG would not help if he is throwing up and that he reduces his survivability rate by 1% each time he misses RT because he is throwing up. It's like he doesn't hear what the RO is saying.

He has always been private but we have young adult children that live here. He was very upset that I would have Christmas dinner and that I would invite my parents. I need to go to the Dr Friday morning so I can't take him but I can pick him up. He refuses to let our 25 y/o son take him or our neighbor. He wants to either skip it or drive himself (which he can't do).
We are not allowed to have any member of my family or his family here...period. I don't even know what to think of how he is acting and he won't listen to me and he made a statement that he feels he lost his manhood.

I asked the RO and he told my husband that the Primary Source they suspected was the tonsils or BOT and assured me they were radiating that area.

He claims that he drinks 48 ounces of water per day but when I take him for an IV they can't find a vein because he is so dehydrated. He doesn't take his High Blood Pressure pills because his BP is so low. I have told him about the nutrition, 2500 calories, protein and 48 ozs of water and he says he is but he isn't evidenced by the weight etc.

I will talk to the RO to find out about molds or something.

I sent his brothers emails today to see if they can talk to him or visit him. I don't know how to 'right the ship' with meds, food and water. My family wants to visit and help but no one can even talk to me or to him. He won't talk to his parents (in their 80's). Fortunately, I have all of you to help me.

I don't know what to do now. I have scheduled him for IV's every day that he has RT because he will do that right now. He is talking about dropping that already. I appreciate any help or advice.

Posted By: ChristineB Re: A Question and Treatment Update - 12-26-2012 12:50 PM
Stacey, WOW do you have alot on your plate!!! Ive seen many patients come thru here that had been stubborn. It makes things twice as hard for everyone involved. I always feel so bad for the caregiver who is running around in circles trying their best to advocate for their patient while the patient works at burying their head in the sand. This is a lose-lose situation with no good outcome. The caregiver gets frustrated and the patient feels they have no control over anything in their life so they will choose the only things they can control and wrongly focus on those things which negatively impact their progress.

Whenever I hear of patients not taking in enough I begin to warn them about being hospitalized for dehydration and malnutrition. This is NOT a good experience at all. It happened to me several times and I felt so sick I thought I was dying. My body ached from head to toe and I mentally wasnt quite with it either. I wouldnt wish this on my worst enemy! Since the patient has so few choices many times they will think skimping one day on water or nutrition wont hurt and its a big deal that they can make it up the next day. That next day never comes and it turns into a viscous cycle of playing catch up. Same goes for nausea, once medication is skipped it becomes very difficult to stop the nausea. When nauseous its not easy to get the 2500 calories and without the meds the nausea will happen. So something little like by not taking meds it becomes a game of catch up that can never be won.

You are doing a very good job at being a caregiver. You are learning and trying your very best only to be met with stubbornness. I hate to say this but you may just have to have a confrontation with your husband. Since he is obviously out of touch with the harsh reality that this is a life or death situation he may need to be reminded this really is a fight for his life and he better get on board and begin to take it seriously. You will have to switch over to your nurse from he** hat and tell him like it is. Ive never heard of anything so ridiculous as skipping rads since someone else would have to drive him there. Thats a big excuse and its just back to trying to control things that are beyond his grasp right now. Sure he will be mad but I think you would much rather have an angry husband than not have one. Im so very sorry to sound harsh!!! I really do understand you are in a tough situation. But without confronting things it wont change and he will continue the buried head in the sand routine. Life does not stop when someone gets sick and by pushing everyone away it doesnt help at all. Things must change and the only way things will get better is by bringing all this directly to your husband and forcing him to be an adult and face reality.

Im so sorry about everything you are dealing with!!!!

Posted By: gmcraft Re: A Question and Treatment Update - 12-26-2012 06:40 PM
Dearest Stacey,

I can totally relate to how you are feeling. When my husband was first diagnosed, I signed on to the forum and urged him to take a look himself; he read a bit of the info but felt it was "too grim" and would not come on again. We had a bit of a discussion and he told me he couldn't understand why I was making a bit deal out of it; he thought he would sail through the treatment and, if he should be in pain, all he would have to do would be to ask for more pain meds. Of course, we all know it's not as simple as that. My husband was a very healthy and strong 65 before his dx, and I guess he was having a lot of difficulty accepting the fact that he might not ever be what he used to be. That, in addition to the fact that the patient has a lot of information thrust at him while he is still digesting the meaning of the diagnosis. I am convinced that most patients may just choose to hear what he wants to hear and ignores the rest, or he may interpret it the way he wants.

Fighting oral cancer requires the patient to be really proactive, something my husband has not yet learned to do. We have had quite a number of tense moments over feeding,hydration, asking the nurses at the hospital for support from time to time -- even over at what time we should leave the house to go to the hospital.

Everyday I remind myself that John probably feels very lonely in the sense that he is the one who is fighting the battle, while I, at my very best, can only be the assistant. It helps me to deal with his moods with patience. I wait for the time of day when he is feeling better and talk to him about whatever I think he might need to do. I also ask the RO questions about long-term side effects in my husband's presence so that he can hear the answers directly from the doctor. (For example, this past Monday I asked about the percentage of patients who become lifelong dependent on the feeding tube.) I would, then, remind him that "you heard what the doctor said."

I cajole, I beg and sometimes I show that I am frustrated with his unwillingness to put in effort. I also hold him and tell him that we are both in this together and that while I am pushing him to do this and that, I am doing it for him and for myself too. It is very hard work, but I do think I am slowly getting through to him.

I would just like to share my feelings with you and I hope it makes you feel less alone in this horrendous fight. BTW, the IV for days when he goes in for RX is a very good idea. It will help him feel a lot better and may even reduce the nausea.
Posted By: David2 Re: A Question and Treatment Update - 12-26-2012 07:24 PM
Stacey, you're a true soldier and you're in the toughest fight of your life, as is your husband. Everything the other posters have advised is great stuff and I know you'll be reading and rereading it.

All I can add is that Zofran never worked for my nausea. Eventually I got some Compazine and that seemed to help. So if you haven't tried it perhaps you could ask for some.

Whatever you do, whatever it takes, don't let him skip or stop the radiation treatments. Everyone here will echo that advice.

His weight loss seems to be about on a par with mine. I was 188 when I began and 6 weeks later down to 158. But I was doing it alone and had no cheerleader to help me get the proper nutrition. He'll do better with you.

Sad to say it, but assuming he keeps going with the rads he's going to have less will to fight you. But you can turn that into a positive by becoming more assertive, as it will be easier for you.

My heart goes out to both of you. But you can get him through it, and in a few months things will look much rosier.

Keep us posted.

Courage.
Posted By: PaulB Re: A Question and Treatment Update - 12-26-2012 08:12 PM
I read each day of skipping radiation is like lowering survival rate by 1 percent due to the cancer repopulating, and after the first two to three weeks of radiation, it becomes less effective anyway, and why it's done in 6-7 weeks, in fractions, boosts and other means. Although, they can still tack on the missed days, it's not the same, if unplanned, and longer radiation is not necessarily better for HNSCC, so it's important not to miss any days, and to complete treatment as planned.
Posted By: terrib Re: A Question and Treatment Update - 12-26-2012 08:57 PM
I always have wondered why radiation is skipped on week-ends? I heard once it's because our bodies have a chance to recover before starting another week. Or, is it for convenience since they are closed on Sat and Sunday. It would be interesting if there was a study comparing 35 straight days and 25 days with the week-end offs.

It's unfortunate for those still in treatment over the holidays. I saw our radiation dept. was closed Sat-Tuesday last week.
Posted By: PaulB Re: A Question and Treatment Update - 12-26-2012 09:45 PM
I like your idea. They do close weekends, some on holidays, and don't have a full answer why, but cancer repopulation, angiogenesis, hypoxia may factor in, and tumor cells are different than regular cells, and sure studies were done finding this was the most effective way for tumor kill, so far, in most cases, since regular cells have a certain cell cycle, and death, but cancer cells don't, and that factors in probably too.There are other ways to deliver radiation that can increase boost dosage, more fraction sizes, hyperfractioned radiation, which is more than once a day, accelerated fractions for shorter duration over the course of the treatment with same dosage, so that may factor in for any planned lapses, type of treatment. Certain organs, structure, like skin, can recover in less than a day, and each has a maximum dosage level before unacceptable toxicities begin, so that is factored in. In some SCCHN they use split dosages (hyerfractions) 2x a day treatments, and even 6 day fractions in 6 weeks (accelerated fractions) instead of standard 7 or adding on a day towards the end of treatment to increase total Gy. There is brachytherapy that uses one time high dose or several weeks, or longer implant doses. I had HD-IORT..high dose Intraoperative radiation therapy, in addition to IMRT. IORT is done during surgery directly to the exposed tumor, which gives a one shot high dose of radiation from 10-25 Gy, which would take two to four weeks with IMRT.. Radiostatic Radiosurgery uses high dose in less time also, like in 5 treatments. They are working on radiation to be more effective with medications, even with Chemo, administered during radiation to make tumors more radiosensitive, less hypoxic, and others.
Posted By: Stacey Re: A Question and Treatment Update - 12-28-2012 12:09 AM
Thanks to all of you. This has not been a good day. He went for RT today without waking me up or anything..he just left. I told the RO last week that he was not taking the meds as prescribed. The RO is on vacation now but the RO apparently emailed the MO that I was concerned about not taking them as prescribed plus the other concerns that I have stated in this forum. The RO was concerned too. My husband sent me texts today that they were running behind and it was pathetic. I replied that if he walked out then he reduced his odds of survival by 1 more percent. He's missed 5 days (sick) and (also Christmas and New Years Day but that was out of his control. He is in bed now because he threw up. I asked if had ever started taking the steroid med intented to prevent nausea and he replied that 'you already know the answer to that'. So I am going to let him be and I am going to the downstairs bedroom. I have my cell phone and my older son is upstairs. I don't understand the attitude and hardheadedness or why I can't invite someone in my family to our house (because I have no one to talk to even about the weather) or the being mad at me or refusal to sign a Health Power of Attorney. He has no will and I didn't ask for a living will. I would like a Health Power of Attorney tho. Goodnight and Thanks again.
Posted By: davidcpa Re: A Question and Treatment Update - 12-28-2012 02:28 PM
Stacey,

Neither my wife nor I had the benefit of this site during my Tx. I was really stubborn during my Tx. I would lie to her about my meds, my cans of VHC, my water, my weight, etc. One day when I had lost my voice (that's happens later on in Tx) I was told by my docs that I needed to be admitted to the hospital for severe dehydration and pain. It was a Sat and I wanted to watch my college football game and that probably wouldn't happen if I did the hospital thing so I refused to go. My wife, my Vida, had had enough and she abuptly screamed "OK THEN JUST LIE THERE AND DIE!!!". With that she left the room and went downstairs. I knew that she would come back but as the minutes passed and turned into an hour I finally realized that I had to put my big boy pants on but too weak to get out of bed and with no voice I had to lie there and wait until she decided I had had enough. She FINALLY did come back; we went to the hospital; I missed my game; the docs told her I was within hours of my kidneys shutting down; and she saved my sorry butt.

At some point you need to be the nurse from hell and at some point he needs to put his big boy pants on.
Posted By: KP5 Re: A Question and Treatment Update - 12-28-2012 04:56 PM
Dear Stacey,
I am so sorry you are going through this. I don't know whether to tell you to be the caregiver from heck, or try crying and begging!! I know at one point Kevin was being so yucky at our mo's office that I got his coat, threw it in his lap, put my coat on and thanked the mo and nurses for their time. I explained that due to Kevin's attitude we were done with tx and were leaving and would not be back. I picked up my purse and headed for the door. Kevin finally said "wait, I never said I wanted to stop tx." He agreed to do what they were asking and apologized for being a jerk. We all agreed to let it go and onward we went. From there on out it was good. All this to say maybe you should call his bluff and just leave him be for awhile, being sure you explain to him that he WILL die, but if that was what he was choosing so be it. Maybe it will work. Then again, if he's too stubborn, maybe it won't!
Again, so sorry you are having to deal with this. Please know we, the other caregivers, understand how hard this is. We are doing all we can to save them, and they are being punk butts!! Just stinks!
Kathy
Posted By: DonB Re: A Question and Treatment Update - 12-28-2012 08:08 PM
Similar to what PaulB mentioned, I was told it was very important not to miss planned treatment days during the first half or so of TX due to cancer re-population concerns.

As I understood it, later in TX, the likelihood of significant re-population decreases.

Also, in my case they delayed my start of TX due to equipment update issues followed by a weekend. They said they needed a minimum of four treatments in a row before a normal two day week-end break to assure these early-on treatments would be optimally effective.
Posted By: Stacey Re: A Question and Treatment Update - 12-28-2012 10:00 PM
Thanks for your support. He finally took the steroid nausea med last night and threw up. (Since he did the same with the other nausea med he doesn't want to take them.) He tried all morning to eat jello and couldn't. Today is the first day that he has had food (gum up or ball up) in his mouth and he literally can't swallow it. I wanted to call the Doctor and he said no. He did have IV fluids after radiation but he threw up after we came home. He has had nothing to eat but that small amount of Jello and some water. I scheduled him for more fluids on Sunday.
Posted By: Anne-Marie Re: A Question and Treatment Update - 12-29-2012 03:46 AM
Oh, my goodness, Stacey - I just had to chime in here as a caregiver and tell you that I can SO relate to what you are going through! It is so very difficult to know when to be soft or when to take charge and put your "Nurse from Hell" hat on! It has to be so horrible for a survivor - to have to face all the changes going on - not only with the body and it's reactions to all that is assaulting him but also the changes in daily living and lifestyle. When you are used to being in control and suddenly it seems like you have no control over anything it can be very depressing.

My son had a bad time with the nausea meds, too and had to have them changed several times. At one point he wasn't eating and I had to threaten to get his sister (a police officer with a gun) to come down and help me stuff him in the car for a trip to the hospital to get a tube installed for feeding. He started eating after that.

Paul also slept a lot and wasn't taking his meds on time so I made a spread sheet with doctors names/phone numbers and listed all the meds and times times and how much he was supposed to take. I made two copies � one to tack up on Paul�s refrigerator so he could check off when he took them and the time, and a copy for me so I could keep track of everything. It is very important to know everything that goes into his body and everything that comes out � and the quantities. This way you can answer the doctors� questions at appointments.

I�m really shocked at how your husband has missed take meds and is reluctant to get to his treatments. If he�s depressed over �losing his manhood�, then it�s time to �man up� and take back his manhood. He can start by taking control of his survival and do what it takes to get better. I would discuss how he is feeling with his Docs. Sometimes meds can have bad side effects. If your husband can be diligent in doing what he is supposed to do, he will start to feel better and will feel more in control.
Stacey � caregivers need caregivers, too and if you are fortunate enough to have family or friends come over to help or spend a little time with you, it can be so good for you. It will strengthen you so that you can be better able to help your husband on the tough journey he is on. Hope things get lots better for both of you soon.
Posted By: AnaD Re: A Question and Treatment Update - 12-29-2012 05:00 PM
Stacey, I am so sorry...as a fellow caregiver, I know how tough it can be. While my husband had his headstrong moments, sounds like yours takes the cake. For what it's worth, my attitude was that he could get as mad and annoyed at me as he needed to, I really didn't care if he even liked me through treatment, as long as he got his stuff done. I believe it's the right thing to do to use anything and everything you can, including the tears of our children, to motivate a patient through the toughest parts.

Re: mouth sores from fillings, we were given a letter to take to our dentist as well. Rather than using our regular dentist, we searched out a good onc dentist, who made the fluoride trays plus offered to make scatter guards to prevent just what your describing. The scatter guards worked well, but my husband started to get mouth sores around week 2. He added using a c-pap chin strap while he slept to keep his mouth closed and moist, along with rinsing with 1:3 hydrogen peroxide, pink mouthwash, mugard & caphosol. Made it through the rest of tx relatively sore free. Don''t think because you already have sores, there's nothing that can be done to improve the situation.

I know it's incredibly tough, made tougher by his attitude with family support, but do not let up. Come on here and vent as much as you need to, we understand and we're here for you. Ana
Posted By: Anne-Marie Re: A Question and Treatment Update - 12-29-2012 11:02 PM
AnaD - I especially like your first paragraph. Sometimes we do have to use everything at our means to get our survivors moving forward no matter how small the steps. And Stacey - There was a day when I was so frustrated I exploded with: "Look, Paul - I am doing everything I possibly can to help you survive and get better - but I just CAN'T do it alone! - you have GOT to help me out a little here!!" I was ready to cry but I think he listened and I think it put some of the responsibility for his survival on him which gave him a measure of control. Stay with us Stacey and let us know how you both are doing.
Posted By: Bray&Graysdad Re: A Question and Treatment Update - 01-01-2013 04:56 AM
Hi Folks,

Just responding to what my RO does for holidays. He opens up the Sunday before the holiday and treats that day. He firmly believes that not getting Tx 5 of 7 days each week negatively impacts results. I do not have treatment tomorrow (New Years Day) but was treated this past Sunday to make up.

Ray
Posted By: Stacey Re: A Question and Treatment Update - 01-02-2013 05:38 AM
Thanks for the feedback and support. He has 12 RT remaining I think. It's all in my diary. I told him a few days ago that I was trying to be conscious of things and not make his feel less manly. He told me that he said he was taking a hit to his ego. That was my mistake so I wanted to clear that up.


The MO had told him that he didn't want him to lose more than 10% of his body weight. He is at that point now and if he sticks to his schedule then he should finish 2 weeks from tomorrow.

The ENT (very 1st Dr that did the surgery) said that he might lose his voice. The RT's have changed the way that area feels in the last few days. He hardly spoke above a whisper a couple of days ago and I think it worries him a lot. The MO had the opposite opinion but you can't help but worry about voice loss.

He's very fatigued now.

We have an appt with the MO tomorrow and hopefully learn more then. I am semi-worried because they called us and asked for the appt. They said they wanted to clear up any confusion. This MO told my husband that he would recover, be fine, no mention of Stage IV etc. My husband thought it was 'preventive radiation treatment only' based on the MO statements. When I brought this subject up to the RO (when he was in the hospital) then we received the MO call asking for an appt to clear up some issues that the RO had emailed the MO about. If the MO chooses to be honest now (AFTEr the missed RT's) then I hate to even guess what price my husband will have to pay for that poor judgment.



Posted By: davidcpa Re: A Question and Treatment Update - 01-02-2013 01:23 PM
Re loosing the voice. Most of us do loose it temporarily. I think (it's been sooo long ago)I lost mine for only a few days to possibly a week. MY wife gave me a bell and a note pad to communicate. To this day my wife says that was the BEST part of my Tx and I have never seen that bell again.
Posted By: ChristineB Re: A Question and Treatment Update - 01-02-2013 01:28 PM
Good luck with the appointment!!!

I lost my voice for a couple weeks. Its very common to lose your voice so hopefully this is one less worry you will have.

Posted By: gmcraft Re: A Question and Treatment Update - 01-02-2013 01:37 PM
Stacey, May I suggest that you go to the meeting with the MO with a list of questions, e.g. Is the radiation preventative or is it treatment, what grade/stage the tumour is at, etc. the kinds of questions that you believe your husband needs to hear, so he gets to hear the answers from the horse's mouth .

When you see the RO, one question you could ask is whether the radiation field used in your husband's treatment will impact his voice in the long term or is the voice loss just temporary. Also ask what percentage of the RO's patients have actually lost their voices. Get the doctors to be specific.
Posted By: AnaD Re: A Question and Treatment Update - 01-02-2013 04:34 PM
My husband lost his voice during treatment as well, very much hoping this is temporary for your husband too. Ana
Posted By: Stacey Re: A Question and Treatment Update - 01-11-2013 11:25 PM
Most recent update:

He has 4 RT's remaining. The RO told him on Tuesday that 'You have to eat to live'. I think he has lost 25 pounds (from 180 lbs). He is trying to eat Ramen Noodles, French Toast, Egg Drop Soup but no Boost or Ensure. He stopped with the IV fluids last week because he drinks plenty of water (he says).

He meets with the RO on Monday. I will keep you updated. Thank you for your support and this forum.
Posted By: PaulB Re: A Question and Treatment Update - 01-12-2013 12:51 AM
He needs intervention with his weight loss, which is multifactal, possibly with an enternal feeding tube, medications, counseling, nutritionist, and speech, swallow therapist evaluation. Doctors get concerned when 10 percent of weight is lost unintentionally, and is considered cachexia or anorexia really, and he lost almost 15 percent. It is shown how one does during treatment, including maintaining weight, can effect prognosis, and too much weigt loss effects negatively, effecting healing, and bodies ability to fight cancer. As you probably know, and heard, he has one shot at this, but it's really up to him to fight or flight. Everyone needs help, and there are meds to increase the appetite, build muscle, reduce inflammation, improve mood, and easy ways to add extra calories to foods, plus other interventions mentioned. Thankfully, he has you by his side.

20 percent of cancer deaths are due to malnutrition from anorexia, cachexia, and cancer. Even 5% weight loss is a concern for some doctor's and clinician's. Here is a link for "Nutrition In Cancer Care PDQ" from the National Institute of Health, with plenty of information regarding thr proper need of nutrition with cancer, during treatment, recovery, therapy assistance, and others.

http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1
Posted By: Charm2017 Re: A Question and Treatment Update - 01-12-2013 01:10 AM
Stacey

Sorry I may be missing this, but did the MO ever tell your husband whether the radiation was 'preventative" or treatment?
Like DavidCPA, I was an extremely stubborn patient - one that your husband would probably relate to. Despite what it looks like, it could all turn out okay. Even though late, the radiation treatments really do a job on cancer cells. As for the weight loss, that 10% or 15% weight loss "rule" is just a general guideline with lots of individual exceptions. I had bulked up with lean muscle mass to 177 pounds from my 127 pounds speedy marathon days. I refused the PEG so I lost about 37 pounds. I never had dehydration or any issues except having to put heavy lead weights into vest pockets and wearing combat boots when I got on the RO's scale. (which earned me lots of rebukes when I first joined OCF and was not only proud of it but encouraged others to do the same - I have now repented and renounce that practice and no longer recommend it). I'm up to 142 pounds now 5 years later so it turned out okay.
So it's a shame you have to deal with all this. But there is still hope.
Charm
Posted By: Stacey Re: A Question and Treatment Update - 01-12-2013 06:18 AM
The RO did tell him that it was not prevention.

We were going for IV fluids but he won't do that now plus he won't let me call the doctor or the dietician. He thinks they can't do anything to help him. I said they could do a nasal feeding tube and he made it clear that he would never do that (in a not so nice way so I left the house for a few hours). He did one Benecal in applesauce (few days ago) and said it is gross so that is done.

He was light headed last night and got sick today. I have tried to explain to him about the proper nutrition/protein/fluids etc. He told the RO this week that Ensure was gross and the RO told him that he needed to try to ignore the bad taste and drink it anyway and that he had to eat to live. The RO did not change his opinion/mindset at all.

He does have a RO appt on Monday morning and hopefully this RO can talk to him.



Posted By: gmcraft Re: A Question and Treatment Update - 01-12-2013 01:18 PM
Dear Stacey, I'm sorry that you are having such a hard time. Would your husband agree to a bolus feeding tube which goes right into the stomach? My husband has one and people are not even aware that he has one. If your husband feels light-headed and sick, it is possible that he is dehydrated. Can the RO make him go in for IV's?

Talk to your husband and ask him what HE can do to help himself heal and what goals he can set for himself. Let him know that you will be there to assist him to reach his goals. He can take control of that part of his life and prove to the doctors that he is man enough to get well.
Posted By: Charm2017 Re: A Question and Treatment Update - 01-12-2013 02:42 PM
Stacey

It's one thing to be stubborn, it's quite another to be stupid.
Since your husband seems to have an overinflated image of his masculinity (too bad you are not local so I could drive over and tell him in person and dare him to do something about it - after a fight, guys bond and I wouldn't hurt him too much), sometimes, like judo, that can be used against him. My suggestion is to smile and say how you have read here on OCF that some men find it just too difficult to force down Ensure, or other drinks and you understand that not everybody can do that. The other option is to say that some men just don't want to bother with all that liquid sissy drinks so they get a PEG tube right into their stomach. What's a little hole to a real man, right? I don't know what would work best for him.
You have tried reason and facts without success.
Seriously, doesn't he have a brother or father or buddy who can talk some sense into him. If he cannot stomach the drinks, then he had to have a PEG tube.
I'm so sorry he is being so mean to you when all you are trying to do here is keep him alive.
Charm
Posted By: tina77 Re: A Question and Treatment Update - 01-12-2013 02:55 PM
Stacey, I get that boost takes like crap. I agree, but they are a necessary evil if he can't manage anything else. I am also exceedingly stubborn - sign Taurus born in the year of the ox. You don't get any more stubborn than me, but I wanted to live, and that's what it came down to - get busy living or get busy dying.

Tell him to stop being an ass and if he needs an ego boost, that he has to live for you if not himself.
Posted By: Cheryld Re: A Question and Treatment Update - 01-12-2013 05:19 PM
He needs proper nutrition and hydration or he'll slide into a black hole - his body needs proper food, (or ensure, boost etc...) to boost his immune system and help him heal so that the chemo and rads can do their job efficiently. People do not realize how delicate our body is in terms of nutritional balance and healing. I have never understood people who don't do whatever they can to get he best possible outcome. Tell him it takes 12 swallows (for me - I'm a woman) to chug an ensure. He only has to do it 5 - 6 times a day - depending on how calorie dense it is - it takes less than a minute and will give him the protein and nutrition required to heal - without it - it will take longer even after treatment - to get back to almost normal. Also radiation and chemo damage tissues. So aside from fighting infection, having to maintain normal body function, and fight cancer - he has to heal. Lack of proper nutrition along with hydration, stalls all that progress. Ps ramen noodles have limited nutritional value. I too got by without a peg as I couldn't use the one they put in, but the end of treatment and first week post treatment were the worst and to make up for not eating - I chugged high protein shakes. Best of luck.
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