Need Advice
He is also complaining a great deal about the mocus in his throat and claims that it is coming from the tumor draining and not the side effects from rads. He will not try the papaya juice, I got for him. Everything I suggest, he says burns his mouth. He does not think the Dr. knows what he is talking about even though 2 doctors and many nurses have said the same.
I don't mean to make this so long, but I am afraid that he will not be able to get through the 7 weeks if this continues. I am also afraid that there is something else going on or that the cancer could have spread in the 3 weeks since his PET. The nurse told me that could not be the case, that it takes longer then that.
Please someone give me some advice and their opinion. How can he be doing so great and 24 hours letter be in this condition.
My mom and I are at a lost as to what to do.
Comments
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Hey Puma Kitty
I forget, does dad not have a peg? I did not have chemo, only rads, and had a peg. I started with bad side effects in my mouth very fast. The doctors are telling me that has to do with the hypersensitivity to radiation (and chemo, which would prob kill me) that is a problem for Fanconi Anemia patients.
Even though I lost no weight during rads, and I was putting in tons of water, and trying hard to boost my potassium levels with baby food, and gatorade, thru my peg, I could not get enough and eventually was getting fluids weekly, which made me feel a lot better. One day I showed up and I hit the floor right in front of the nurses station. How embarrassing.
I can tell you from experience there is no way I could drink papaya juice. I still can't. Juices feel like acid in my mouth, and even water still burns me. I don't know what to say, just that the pain does get pretty intense for some, and radiation is cumulative, so it will more than likely get worse. You really can't understand the pain unless you have been thru it.
Yes there were times I got significantly worse within 24 hrs.
He can make it thru, there are many of us that have. It aint easy, believe me. It was by far the hardest thing I have had to endure. I don't think that the cancer had spread either for your dad. I went pretty far between my surgery and my rads than a lot of people. My docs were not thrilled about that, but I was okay, and I needed to get other opinions. I had dissection 1-9-09 and rads started 4-6-09.
If he does not have a feeding tube, he may want to consider getting one in if he cannot get enough water and nutrition in. Your body needs that to fight.
I know it must be torture to watch someone go thru this and not be able to do anything to make them better. My poor step mom was really making herself sick with worry thru mine. She was there for me in that she drove me to rads every day. But all my nutrition, health care, washing, meds....etc I did on my own. I will tell you it was not easy. My parents lost my brother in '93. My father and gram were with him everyday in the hospital in NYC. So, I am sure to see me, was not easy.
Sending you and your family good thoughts,
sweet0 -
Sweetsweetblood22 said:Hey Puma Kitty
I forget, does dad not have a peg? I did not have chemo, only rads, and had a peg. I started with bad side effects in my mouth very fast. The doctors are telling me that has to do with the hypersensitivity to radiation (and chemo, which would prob kill me) that is a problem for Fanconi Anemia patients.
Even though I lost no weight during rads, and I was putting in tons of water, and trying hard to boost my potassium levels with baby food, and gatorade, thru my peg, I could not get enough and eventually was getting fluids weekly, which made me feel a lot better. One day I showed up and I hit the floor right in front of the nurses station. How embarrassing.
I can tell you from experience there is no way I could drink papaya juice. I still can't. Juices feel like acid in my mouth, and even water still burns me. I don't know what to say, just that the pain does get pretty intense for some, and radiation is cumulative, so it will more than likely get worse. You really can't understand the pain unless you have been thru it. Yes there were times I got significantly worse within 24 hrs.
He can make it thru, there are many of us that have. It aint easy, believe me. It was by far the hardest thing I have had to endure. I don't think that the cancer had spread either for your dad. I went pretty far between my surgery and my rads than a lot of people. My docs were not thrilled about that, but I was okay, and I needed to get other opinions. I had dissection 1-9-09 and rads started 4-6-09.
If he does not have a feeding tube, he may want to consider getting one in if he cannot get enough water and nutrition in. Your body needs that to fight.
I know it must be torture to watch someone go thru this and not be able to do anything to make them better. My poor step mom was really making herself sick with worry thru mine. She was there for me in that she drove me to rads every day. But all my nutrition, health care, washing, meds....etc I did on my own. I will tell you it was not easy. My parents lost my brother in '93. My father and gram were with him everyday in the hospital in NYC. So, I am sure to see me, was not easy.
Sending you and your family good thoughts,
sweet
Thank you so much. This is very hard to see. I just hope that I am doing the right thing, by forcing the water on him. He is doing a great job with eating and has gained one pound. The dr. said that he would do a feeding tube with him if he started losing weight fast. My dad is overweight now. He is getting good protein, but I am concerned about the hydration. I think I will ask the nurse if they can just give him extra everytime he has chemo.
I understanding about hitting the floor and being embrassed. The day after we got his PET back and found out that is was not anywhere other then what we first thought. I passed out at work in front of a really cute guy. I was so stressed that my body just shut down. I have learned to try to take care of myself.
Was there anything that helped you with the mucus and burning? he has been rinsing and using the mouth spray that was mention.
Thank you again. You are an amazing person.0 -
mouth burningPumakitty said:Sweet
Thank you so much. This is very hard to see. I just hope that I am doing the right thing, by forcing the water on him. He is doing a great job with eating and has gained one pound. The dr. said that he would do a feeding tube with him if he started losing weight fast. My dad is overweight now. He is getting good protein, but I am concerned about the hydration. I think I will ask the nurse if they can just give him extra everytime he has chemo.
I understanding about hitting the floor and being embrassed. The day after we got his PET back and found out that is was not anywhere other then what we first thought. I passed out at work in front of a really cute guy. I was so stressed that my body just shut down. I have learned to try to take care of myself.
Was there anything that helped you with the mucus and burning? he has been rinsing and using the mouth spray that was mention.
Thank you again. You are an amazing person.
sorry you passed out in front of the cute guy. geez. I have had some embarrassing momenbts too. Such is life, what are you gonna do? You live. Sometimes with your dignity a little less intact for the moment. lol.
Well, I will tell you for a while I was using the "magic swizzle" that they gave me. Then I started calling it the "not-so-magic-swizzle". i have heard others call it magic mouthwash here. You can get it by perscription. It is liquid lidocane and some other stuff, it is pink, and numbs your mouth, you can swallow it. The bottle was attached to my lips for quite a while. I eventually had to get fentanyl pain patch. 75mcgs, and the pain was still intolerable for me. I have to say I did not want to be on it, but what was i going to do? It helped for a while, till the pain peaked. they would not give me more meds because I am so tiny, and Fanconis Patients are very sensitive to meds. We usually require less than others. It is also hard to get off of. You should try to stay ahead of the pain. I had manu sleepless nights, sitting on edge of bed, head cradled in hands rocking back and forth from the pain. I actually fell asleep once like that, and fell off the bed and onto the floor. I had been up for about 36 hrs straight.
I used the baking soda/water/salt rinse too. I had to use and still do, Act children's flouride rinse, and kids flouride berry flavored tooth paste. my mouth burns with minty stuff. they had also given me these sponges on a stick to brush my teeth because the toothbrush was brutal after i lost the skin on the roof of my mouth, and stuff. I also bled a great deal with my mouth. For a while they thought I had thrush, they gave me meds for it, and when it did not do anything, we realized it was not thrush. I did have a lot of sores and white spots, and a lot of bleeding.
Is he using anything on his skin for burns? I used radiaplex from the begining and the doctors said my neck did not get as bad as others he has seen. My aunt recommended it, she used it on her husband and her sister in law used it with good results too.
not amazing...you just do what you gotta do to survive...
sweet0 -
Sweetsweetblood22 said:mouth burning
sorry you passed out in front of the cute guy. geez. I have had some embarrassing momenbts too. Such is life, what are you gonna do? You live. Sometimes with your dignity a little less intact for the moment. lol.
Well, I will tell you for a while I was using the "magic swizzle" that they gave me. Then I started calling it the "not-so-magic-swizzle". i have heard others call it magic mouthwash here. You can get it by perscription. It is liquid lidocane and some other stuff, it is pink, and numbs your mouth, you can swallow it. The bottle was attached to my lips for quite a while. I eventually had to get fentanyl pain patch. 75mcgs, and the pain was still intolerable for me. I have to say I did not want to be on it, but what was i going to do? It helped for a while, till the pain peaked. they would not give me more meds because I am so tiny, and Fanconis Patients are very sensitive to meds. We usually require less than others. It is also hard to get off of. You should try to stay ahead of the pain. I had manu sleepless nights, sitting on edge of bed, head cradled in hands rocking back and forth from the pain. I actually fell asleep once like that, and fell off the bed and onto the floor. I had been up for about 36 hrs straight.
I used the baking soda/water/salt rinse too. I had to use and still do, Act children's flouride rinse, and kids flouride berry flavored tooth paste. my mouth burns with minty stuff. they had also given me these sponges on a stick to brush my teeth because the toothbrush was brutal after i lost the skin on the roof of my mouth, and stuff. I also bled a great deal with my mouth. For a while they thought I had thrush, they gave me meds for it, and when it did not do anything, we realized it was not thrush. I did have a lot of sores and white spots, and a lot of bleeding.
Is he using anything on his skin for burns? I used radiaplex from the begining and the doctors said my neck did not get as bad as others he has seen. My aunt recommended it, she used it on her husband and her sister in law used it with good results too.
not amazing...you just do what you gotta do to survive...
sweet
He does have to worry about his teeth. He has had dentures since he was 30 years old (major car accident. He has the magic mouthwash, but has found at this time just using Malox does just a much.
The nurse told him to just use Aloe gell 3 times a day on his neck and face. That is what he is doing, but I am going to keep an eye on it. I just talked to him and he is feeling better. I think the longer he sleeps the worse his mouth feels when he gets up. Right now the only pain meds he is taking it Tylenol.
His sleeps good during the day after rads, but it is the night that keeps us all awake.
Again thank you for your advice.
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Private EmailPumakitty said:Sweet
He does have to worry about his teeth. He has had dentures since he was 30 years old (major car accident. He has the magic mouthwash, but has found at this time just using Malox does just a much.
The nurse told him to just use Aloe gell 3 times a day on his neck and face. That is what he is doing, but I am going to keep an eye on it. I just talked to him and he is feeling better. I think the longer he sleeps the worse his mouth feels when he gets up. Right now the only pain meds he is taking it Tylenol.
His sleeps good during the day after rads, but it is the night that keeps us all awake.
Again thank you for your advice.
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Glutamine Powder
Puma,
You should try the Glutamine Powder. It should help to stop the burning in his mouth and assist in the recovery of the tissue in his mouth.
I couldn't even drink water till I started on this stuff. You mix a tea spoon in the glass of water and rinse and swallow - so he should be able to drink more water and also when he does try something that burns, a quick sip of the Glutamine water should neutralize the burn. You can get it at a good Supplement store or online. if you google it, all site are positive but most are for Body builders. Look fro site re Natural foods and health and read their spiels.
Everyone gets the heavy mucus. My doctors gave me Fluimicil first by Nebulizer, then later in powder which you again mix in water and swallow.
Hope this helps your Dad.
Scam0 -
Hi Kitty
At times when I was in treatment I would have to go to my Chemo doc every other day and let them give me a big bag of water because I was dehydrating so badly from not getting enough liquids. Don’t let him dry out, tell him if he will not drink the water then he is going to the chemo doc for an IV it might help you to motivate him to try and drinking the water.
Come to think of it the nurses were so cute I did not mind going every other day for a bag of water just so I could flirt with them, good way to keep an old man going through treatment happy. lol
All the best0 -
Cute NursesHondo said:Hi Kitty
At times when I was in treatment I would have to go to my Chemo doc every other day and let them give me a big bag of water because I was dehydrating so badly from not getting enough liquids. Don’t let him dry out, tell him if he will not drink the water then he is going to the chemo doc for an IV it might help you to motivate him to try and drinking the water.
Come to think of it the nurses were so cute I did not mind going every other day for a bag of water just so I could flirt with them, good way to keep an old man going through treatment happy. lol
All the best
I think in my dad case the nurse are happy to see him. During his first chemo the nurse almost knocked over a IV pole winking at him. That has been the case every where he goes. My mom is thinking about going just to make sure they let him come home.
At least the Chemo doctor is cute and flirts with me so I have some fun!
I am going to see if they can give him extra fluids.
He is having a good day an drinking more water. After a couple of times seeing how much better it makes him feel, I think he will listen
Talk with you later.
Kathy0
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