Thank you Sooner. I'm trying to get my nutrition in order. I was a bit lax in trying to keep up the calories and water intake, so i'm paying for it now. I haven't got the blended foods quite right...lol I must be not be doing something right. I don't have a vitamix, but i bought the ninja high end blender. It can get things silky smooth, but I still feel the grainy texture. I do mostly shakes, as it is hard to make a mistake.

Update:. Need some help. Im getting so sick injesting anything today. Water or food doesnt matter. Should i ask for an iv? How long before i should consider the peg?

I would really encourage you to get in contact with your treatment team ASAP. Dehydration and lack of adequate nutrition are extremely problematic. There are a lot of factors that need to be addressed in your situation. Make sure they understand the depth of the issue. My husband ended up in the ER even with a PEG because he could not meet his intake goals and developed very severe dehydration. I left him with my daughter sleeping peacefully and 20 minutes after I got to work, she called me and we were discussing if she needed to call an ambulance or if he could wait until I could get back home to take him to the hospital. I am not trying to scare you but just to be sure you realize you have to be serious about ensuring your intake is adequate. I am not blaming you. My husband was trying. There are just a lot of parts of your system out of whack. We learned to take advantage of fluids every time they were offered. We had standing orders for them as needed. I don't know if you are on chemo but my husband was and that was another complicating factor for him. I am not a doctor and can't comment on the timing of the PEG tube or if it is needed. My husband elected to have it placed before treatment started to avoid any possibility of an interruption to the treatment schedule. You are entering a difficult phase of the treatment cycle. You need to work with your treatment team to get a plan in place that will allow you to meet your intake goals for the rest of treatment. What Christine says about intake is all true. I am sorry you are having these struggles. Thanks for reaching out. Don't minimize things when you contact the team. You need help. His medication protocol had to be adjusted several times as his reaction to the treatments changed over time.

Wendy,

All that Sooner said is true. i would suggest to ask your doctor directly about a PEG. In my husband's case, he got his PEG in the third week of treatment. We were very thankful to have that to keep his intake at the right level. Even then, he became dehydrated and needed fluids.

Im so sorry you are going thru such a hard time!!!! I detest seeing anyone struggle. When a patient is unable to sustain themselves with enough calories and hydration they should have a feeding tube. I was concerned you would reach this point when you had so many issues so early in your treatments. With continued weight loss every time you were weighed it was only a matter of time before it caught up with you. Im very concerned about what you said about you cant take anything in. If you arent able to keep anything in your stomach, a feeding tube wont change that. Plus, it could be a week or 2 before you can get in to get a feeding tube surgically placed. You could end up with a faster option, the nasal tube. Thats quickly inserted and removed without surgery. Its more for patients who will only need it for a few weeks. Your doctor needs to assess you and determine if you need to have a regular feeding tube (peg) surgically placed or if you would be ok with the temporary nasal tube. You probably will need a consult with a gastro doc too.

If you are not able to take anything by mouth you need to speak up and talk to your treatment team. Tell them exactly whats happening and what you are going thru. Its very important to talk openly with your medical team so they can help you thru this. You may end up being hospitalized for malnutrition and/or dehydration. Both can cause some pretty serious issues and make you feel absolutely horrible. If you havent gotten a prescription for extra hydration yet that needs to happen immediately. Your treatment team needs to be on the ball and watch their patients closely, especially those who have continual weight loss. It doesnt matter if the patient is 150, 250 or even 650 pounds, they still should NOT be losing massive amounts of weight as it causes big problems in many ways including muscle loss, making the patient very weak. I posted many links that were loaded with important info about all of this in the post dated July 10th. Im very sorry to hear you are having all these problems. Your treatment team should always have doctors on call 24/7. Dont forget they work for you, its ok to call them even if its not regular business hours. If your condition is serious then you should be taken to the ER immediately. Your caregiver will need to determine something like that. Your caregiver can make the phone calls to your treatment team as long as you have given permission for them to speak with that person.

Wishing you all the very best and hoping you soon feel a little better. Please keep us posted on how you make out.

Im thinking its pretty serious at this point. My body quivers just drinking water and swallowing food. A few minutes and im nauseous and have to throw up. Im taking Zolfram for the nausea, it helps somewhat, but the mucus also makes me gag as well, causing me to throw up from the reflex. I keep trying new things, but have to rely on boost, but even that is making me sick. I was never very tolerant of milk or dairy, and now its become an issue. Ive talked to my family...and seeing me today so sick and weak, they too think this might be for the best. I feel so bad for them, having to watch me be sick, refuse to eat and drink, out of fear of throwing up. The strain from it all has left my mouth raw and bloody. Im at my wits end. I have an older protective brother, who after seeing me get sick today, literally was telling me to stop treatments, saying its killing me. I told him im so close to finishing, but his point is that, it will do no good to finish , if im left sicker than when i started. So we all agreed to discuss the tube tomorrow. Im concerned as this doc, in the beginning, said he was strongly against the tube, but im down 30 lbs since this all began and losing a pound a day. Im getting weaker each day. Something needs to change. I was told by a family member that im not trying hard enough, and that if i wanted to eat and drink that i could. How can i argue with logic!? I keep telling them...im hungry and thirsty, but if it passes into my mouth and down my throat , it will make me sick. They say better to throw it up then, at least im eating. They are so scared of me not getting the nutrition i need that they are ignoring the fact that it also hurts me to get sick. Ughhhh. Pity party, over. ****I know im nearing the end, 10 more to go. I never thought i would feel this way. I actually thought i was stronger than this. But im mentally and physically exhausted now.

Wendy, its imperative that you understand stopping treatments is NOT an option if you want to eliminate the cancer. You are very lucky to have a supportive family there to help you. But at the same time, Im concerned about the choices they are telling you to make. Unless you have family members who have had years of medical training and/or they have knowledge of oral cancer, its treatments and side effects then they probably arent the best ones to be making your medical decisions. From what you described, they do not have a good understanding of how invasive OC and its treatments can be. SCC OC has claimed the lives of far too many good people. It is a deadly disease that you MUST treat completely to eliminate it or it will continue to grow. Your caregivers can read and learn about OC on the main OCF site. I posted the links in one of the first replies I made to your posts.

As Ive told you from the start you need to focus on what you have within your control... your intake. Every single day, you MUST take in at least 2500 calories and 48-64 oz of water or treatments will be much harder than they have to be. Since your weight has continued to drop you need to up your daily calories to 3000 +, optimal would be 3500 calories per day. The biggest issue here is your inability to keep food and water down. A feeding tube will not change having nausea. Have you discussed your nausea with your doctors? Usually only patients who are having chemo will suffer so much with severe nausea. The mouth sores can be helped with the baking soda/salt/warm water mouth rinse, prescription magic mouthwash, pain meds, and manuka honey. Whatever you take in that you throw up needs to be replaced. Losing weight so quickly has its own set of problems its causing. After going thru weeks of not getting enough calories and hydration, it will eventually catch up with any patient leaving them feeling absolutely terrible. This quickly can turn into a vicious cycle of playing catch up which is impossible to get ahead of. Ive been down that road and it landed me in the hospital several times for malnutrition and dehydration. I felt so bad I thought I was actually in the first stages of dying (I wasnt but I sure felt that bad). I know what you are going thru and how difficult it is. PLEASE help yourself and push yourself to eat and drink. You are coming to a critical point where you must turn your situation around. When I was going thru rads and really struggling, the malnutrition and dehydration were getting the best of me where I had trouble concentrating, remembering, multi-tasking, reading and carrying on a conversation. I do NOT want to see you get to this low point like I did.

I also advise you to ask at your treatment facility to speak to a therapist or other mental health professional who works with cancer patients. Many members have taken anxiety meds to get thru rads. This may be something that can help you. Without a strong support system at home, you need someone who understands what you are going thru and can help you to get thru it. Having someone to talk to face to face can help a patient to feel so much better.

At your treatment facility ask the nurses to use their suction machine to help with the thick mucous. Your doc can write you a prescription to get a portable suction machine at home too. Sleeping with your head slightly propped up on an incline and a humidifier at night helps too. Dairy products while soothing on the mouth sores also make more mucous. Have you talked with a nutritionist at your facility yet? If not, ask if they have someone available. Hopefully they have someone there who is familiar with the challenges an OC patient goes thru.

From what you wrote I know you must be feeling terrible. I completely understand, Ive been down that road myself. What it takes to turn this around is within your reach. You MUST talk openly to your medical team and let them know everything you have been telling us. Tell them all about your support you have at home and what they think you should do. Ask about a therapist, nutritionist, feeding tubes, prescriptions for a portable suction machine and extra fluids to keep you hydrated. We all are in your corner cheering you on, we believe in you. Probably more faith than you have in yourself. We are here to listen if you need to vent or offer suggestions to help make this as easy as possible. But, we can only do so much. Bottom line is... its up to you if you choose to take the advice given to enable you to turn your situation around. Im sorry if it seems like I nag you about your intake. Im not trying to give you a hard time at all. I hate OC and what it does to good people. I only want to see you succeed so you can bounce back and return to your regular lifestyle.

Keep trying and dont give up, no quitting is allowed. Today is a new day, a fresh start to get things right. You have a new chance to meet your daily minimums for calories and water (with your medical teams assistance). See your medical team and tell then everything!!! You need their help immediately today. Speak up and be your own advocate. Dont ever forget they work for you and you deserve their undivided attention right away, if they dont pay attention stick to your guns and tell them you are depending on their years of medical training and expertise. Keep us posted and best wishes with everything!!!!



PS... Im sending you a PM so click on the tiny flashing envelope.

Wendy, You need help from your medical team immediately! Stopping treatment is not an option. Someone has to take over your care for awhile. This is not a matter of you not being strong enough. It's a severe reaction to treatment with dehydration and weight loss.

Don't you get evaluated prior to radiation daily? Haven't the MD, Physician Assistants, and nurses on the cancer team established a relationship with you? All the things Christine and others have written need to be considered - hydration, medication evaluation, Peg or nasal gastric tube, etc., but FIRST you need a through medical evaluation

I do not think you can wait another day to get help. Your medical team needs to make a plan for you to be able to complete treatment.

You cannot stop treatment. You have to see your treatment team today. Do not let people make you think you could eat if you just tried harder. This infuriated me when my husband was in treatment. My husband was trying. He just could not do it. You need medical intervention today. One day, we just had to go to the treatment center and hang around until someone could talk to us. When they saw the condition my husband was in they kicked it into high gear and put on the full court press to turn things around for him. That is their job. Stopping treatment is not an option. This disease is a beast that wants to slay you. You have got to get a medical evaluation so you can stay the course and beat it back like a warrior. Keep us posted.

Im thinking its pretty serious at this point. My body quivers just drinking water and swallowing food. A few minutes and im nauseous and have to throw up. Im taking Zolfram for the nausea, it helps somewhat, but the mucus also makes me gag as well, causing me to throw up from the reflex. Im rinsing and cleaning my mouth every few hours. I keep trying new things, but have to rely on boost, but now even that is making me sick. I was never very tolerant of milk or dairy, and now its become an issue. Ive talked to my family...and seeing me today so sick and weak, they too think this might be for the best. I feel so bad for them, having to watch me be sick, refuse to eat and drink, out of fear of throwing up. The strain from it all has left my mouth raw and bloody. Im at my wits end. I have an older protective brother, who after seeing me get sick today, literally was telling me to stop treatments, saying its killing me. (I know he was just scared seeing me like this, and that is what is making him say it, but I told him im so close to finishing, but his point is that, it will do no good to finish , if im left sicker than when i started). So we all agreed to discuss the tube tomorrow. Im concerned as this doc, in the beginning, said he was strongly against the tube, but im down 30 lbs since this all began and losing a pound to a pound and a half a day. Im getting weaker each day. Something needs to change. I was told by a family member that im not trying hard enough, and that if i really wanted to eat and drink that i could. How can i argue with logic!? I keep telling them...im hungry and thirsty, but if it passes into my mouth and down my throat , it will make me sick. They say better to throw it up then, at least im eating. They are so scared of me not getting the nutrition i need that they are ignoring the fact that it also hurts me to get sick. Ughhhh. Pity party, over. ****I know im nearing the end, 10 more to go. I never thought i would feel this way. I actually thought i was stronger than this. But im mentally and physically exhausted now.