More to deal with..
Amazing when you think life is going to calm down and just serve up some scan anxiety for a few months, I went to the dr and he ordered 3 MRI's of my spine.. interestingly I have 4 issues. The first, I have something in my thyroid. I have read that only 10% of lumps in thyroids are cancer, but I could become both a the patient and a caretaker!.. Always been an over achiever. Then I also have 3 compressed disks in my neck, a cyst on my L4 vertebrae and cysts in both kidneys, which is what really scares me, since I had adinocarcinoma (2004) in the area. Jeesh.. just a few more doctors and a couple more weeks, and a few CT scans and more nerves.
Meanwhile, Dan's doing great. He's up 6-7 lbs from his bottoming out weight. The TPN is heaven sent. His mouth just keeps breaking out, over and over. He's back to mugard 4 times a day. He was also able to reduce the patches to 25 mcg's but today is the first time he's used break through meds in weeks, as his mouth is very painful.
How long did everyone else have the regular recoccurance of radiation issues in the mouth? Is this normal?
(really hoping you all tell me 2 weeks again 
Hope everyone is doing well, I am just catching up again.
Kari
Comments
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Not Quite as Bad
I did not have it quite that bad. It was about 3 weeks from the end of radiation and chemo that my mouth got to its new normal. The first two weeks after radiation were clearly the worst. Mouth was very bad, everything was bad. The third week brought some relief.
Just slight over 2 mothns and one week out I have had some retracing in my condition. Fatigue and other issues but nothing like those first three weeks after radiation.
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Not Quite as Bad
I did not have it quite that bad. It was about 3 weeks from the end of radiation and chemo that my mouth got to its new normal. The first two weeks after radiation were clearly the worst. Mouth was very bad, everything was bad. The third week brought some relief.
Just slight over 2 mothns and one week out I have had some retracing in my condition. Fatigue and other issues but nothing like those first three weeks after radiation.
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Hobbs..HobbsDoggy said:Not Quite as Bad
I did not have it quite that bad. It was about 3 weeks from the end of radiation and chemo that my mouth got to its new normal. The first two weeks after radiation were clearly the worst. Mouth was very bad, everything was bad. The third week brought some relief.
Just slight over 2 mothns and one week out I have had some retracing in my condition. Fatigue and other issues but nothing like those first three weeks after radiation.
Hobbs,
Thanks, so the retracing or revisiting isn't that abnormal then. And this isn't as bad as the first two weeks, but since, it has varying degrees that interfere with the ability to eat. I think a lot of Dan's symptoms have hung on longer because of the 25% of his body weight was lost pretty quickly.
Thank you! Kari
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Posted Twice Not Sure Why
Sorry my reply posted twice. I think if our internet is slow sometimes messages post twice.
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Well damn, Kari!!
I'm going to mentally put your thyroid lump into the 90% that don't have cancer.... you don't have to always be an over-achiever
...this time is one of those times. Is your MRI from waist to head, to include the cysts in your kidneys? No kidding this is adding stress onto an already thick layer....sending you positive thoughts. I had an easier time after treatment was over than Dan is having....by the third week, I was pretty much over sores in my mouth....I just had to be careful what I ate and drank, because it was so so sensitive to some things, and burned.
Tucking you into my pocket this time.
p
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Kari,
In Phrannies pocket, always worked for me during hard times.
After 2 – 3 weeks post treatment my worst days were over, that way I could concentrate on no taste awful feel of food and dry mouth no spit. I hope his mouth soreness goes away soon so he can enjoy other aspects of H&N recovery.
It most certainly got better for me, believe me I am not normal, far from it just ask anybody that knows me (don’t ask Skiffin). The new normal looks kind of like me and acts kind of like me, but is different.
For you most wonderful caregiver, I hope all your troubles are minor or nonexistant.
Blue skies ahead
Matt
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Geez, Kari!phrannie51 said:Well damn, Kari!!
I'm going to mentally put your thyroid lump into the 90% that don't have cancer.... you don't have to always be an over-achiever
...this time is one of those times. Is your MRI from waist to head, to include the cysts in your kidneys? No kidding this is adding stress onto an already thick layer....sending you positive thoughts. I had an easier time after treatment was over than Dan is having....by the third week, I was pretty much over sores in my mouth....I just had to be careful what I ate and drank, because it was so so sensitive to some things, and burned.
Tucking you into my pocket this time.
p
I'm with phrannie on this one. The wife of a colon cancer forum friend just went through a thyroid tumor removal. It was not cancer and all is well with her. Sorry to hear about new possible troubles on top of everything else. Two words I've learned never to say are "what next" because I always find out. LOL
Luv,
Wolfen
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happy (& hoping) to be in the 10%phrannie51 said:Well damn, Kari!!
I'm going to mentally put your thyroid lump into the 90% that don't have cancer.... you don't have to always be an over-achiever
...this time is one of those times. Is your MRI from waist to head, to include the cysts in your kidneys? No kidding this is adding stress onto an already thick layer....sending you positive thoughts. I had an easier time after treatment was over than Dan is having....by the third week, I was pretty much over sores in my mouth....I just had to be careful what I ate and drank, because it was so so sensitive to some things, and burned.
Tucking you into my pocket this time.
p
Phrannie,
Thanks for the pocket! Hopefully we find out soon, dr's appt is a week from Monday. The MRI was actually 3 MRI's, cervical, thoracic, and lumbar.. or as Skiffin might say from stem to stern! My kidneys are just back there hiding close by... I actually saw the back half of my lungs too.. they gave us a copy - interesting if I only knew what I was looking at.
No wonder those docs spend so many years in school.
Kari
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Wolfenwolfen said:Geez, Kari!
I'm with phrannie on this one. The wife of a colon cancer forum friend just went through a thyroid tumor removal. It was not cancer and all is well with her. Sorry to hear about new possible troubles on top of everything else. Two words I've learned never to say are "what next" because I always find out. LOL
Luv,
Wolfen
LOL, the last time I said what's next, during Dan's treatment and then in hours my glasses broke and I had a tooth removed several days apart - boy have I learned that one! More often than not most of these issues are not that bad, just nuisance material.
How's the family, I am still wishing all my good thoughts for you!
Kari
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blue skys... but yellow gold?CivilMatt said:Kari,
In Phrannies pocket, always worked for me during hard times.
After 2 – 3 weeks post treatment my worst days were over, that way I could concentrate on no taste awful feel of food and dry mouth no spit. I hope his mouth soreness goes away soon so he can enjoy other aspects of H&N recovery.
It most certainly got better for me, believe me I am not normal, far from it just ask anybody that knows me (don’t ask Skiffin). The new normal looks kind of like me and acts kind of like me, but is different.
For you most wonderful caregiver, I hope all your troubles are minor or nonexistant.
Blue skies ahead
Matt
Matt,
I read your post and a light went off.. Dan has 7 gold caps in the back of his mouth... I wonder if they are 'hot' from radiation, and if they keep on giving.. if so, that man will be in the dentist chair before he knows whats going on... but they'd tell you that up front, right?
I hope you are right, I see better every few days now, it takes him a few days longer to feel each improvement. It's be much nicer if he could enjoy his better look as much as I do.
And thanks, hopefully the appts at the doctors are a routine and that is just new to me, and easy! I like EASY!
It looks like spring is starting to spring here.. maybe I can see those blue skies more often!
Kari
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wow
Kari,
Break through pain, is manageable. I'm glad to hear he's able to reduce that patch. Also instead of the mugard has he tried anything else ? Now on to you young lady ! Did they use dye w/that lenghthy MRI you had done ? And have they done a thyroid profile on you ? (blood test) I have compressed discs in my upper spine too, and massive OA. Noduals on the thyroid could mean graves disease which is easy to fix. (fingers crossed) You said you had adenocarcinoma in the area of those kidneys ? What type of tx's did you receive ? My sister just had a giant cyst removed from her right kidney, lazered off. (size of a grape fruit) There is a name for it, I'll have to ask her again. And I know she has many small ones. Are these on the outside or inside, and on both ? I like Phrannie will be keeping you both tucked in my pockets for better days and good outcomes. Please keep us posted, you have been a fantastic care giver.....and certainly didn't need this extra additional concerns ! Katie
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Double WOW
I can honestly say that my husband didn't have the mouth sores or that much pain when he went thru 2 rounds (35 each) of radiation in basically the same spot roughly 1 1/2 years apart. But as we have found out radiation is the gift that keeps on giving and that each is different in how they react. Like the radiation completely closed off the back of his throat and when he had to have a laryngectomy they had to rebuild his throat. Second time the same thing happened, but the doctor was able to dilate his throat without any problems, thank the lord.
I had to have part of my thyroid removed about 20 years ago due to a tumor. Mine was negative for cancer. I was put on thyroid medication at the time but only stay on it for about a year. But have been back on it now for 10 years or so. I have also found out over the years that I have cysts in several parts of my body but they have always turned out to be nothing. In fact I have a big one on the back of my neck, very visible, but the doctors keep reassuring me that it is nothing to worry about. I know it is hard not to worry but remember it isn't anything until they say it is.
Wishing the best to you both -- Sharon
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Thank you Katiekatenorwood said:wow
Kari,
Break through pain, is manageable. I'm glad to hear he's able to reduce that patch. Also instead of the mugard has he tried anything else ? Now on to you young lady ! Did they use dye w/that lenghthy MRI you had done ? And have they done a thyroid profile on you ? (blood test) I have compressed discs in my upper spine too, and massive OA. Noduals on the thyroid could mean graves disease which is easy to fix. (fingers crossed) You said you had adenocarcinoma in the area of those kidneys ? What type of tx's did you receive ? My sister just had a giant cyst removed from her right kidney, lazered off. (size of a grape fruit) There is a name for it, I'll have to ask her again. And I know she has many small ones. Are these on the outside or inside, and on both ? I like Phrannie will be keeping you both tucked in my pockets for better days and good outcomes. Please keep us posted, you have been a fantastic care giver.....and certainly didn't need this extra additional concerns ! Katie
Katie,
No dye in that MRI, I have an allergy to iodine, but that won't stop them from using it in the CT Scanner on Tuesday. They are giving me prednisone and benedryl and a nurse and radiologist will be standing by in case. My cancer was cervical, and I was fortunate to catch it in the early stages so after surgery I did not do the chemo/rads. Although doctors have found adeno cells none cancerous where they don't belong.. and I just mentally have never trusted them. The MRI showed lesions in both kidneys, and suggested that by percentages they are probably cysts.. we will see what the CT results come up with. The blood tests they will most likely do at the endo's office in a week.
And just curious, with your disks.. do you drop things? when you know you are hanging on to them? last fall I just started dropping things with my left hand, and always stumped as to how it happens.. I think it's listening and then just not hanging on sometimes. It's inconsistent too.. but I like when it works with the right!
Kari
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SharonLadylacy said:Double WOW
I can honestly say that my husband didn't have the mouth sores or that much pain when he went thru 2 rounds (35 each) of radiation in basically the same spot roughly 1 1/2 years apart. But as we have found out radiation is the gift that keeps on giving and that each is different in how they react. Like the radiation completely closed off the back of his throat and when he had to have a laryngectomy they had to rebuild his throat. Second time the same thing happened, but the doctor was able to dilate his throat without any problems, thank the lord.
I had to have part of my thyroid removed about 20 years ago due to a tumor. Mine was negative for cancer. I was put on thyroid medication at the time but only stay on it for about a year. But have been back on it now for 10 years or so. I have also found out over the years that I have cysts in several parts of my body but they have always turned out to be nothing. In fact I have a big one on the back of my neck, very visible, but the doctors keep reassuring me that it is nothing to worry about. I know it is hard not to worry but remember it isn't anything until they say it is.
Wishing the best to you both -- Sharon
Thank you Sharon,
Fortunately Dans' reactions aren't what they were weeks ago, and are not constant, but odd that every few days they break out again and then fine. Hoping it's not his caps holding onto to some radiation. And thank you too for sharing your history.. most cysts are ok.. its just waiting til they get those test results back that gives me the gray hairs!
Kari
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Yes I do....NJShore said:Thank you Katie
Katie,
No dye in that MRI, I have an allergy to iodine, but that won't stop them from using it in the CT Scanner on Tuesday. They are giving me prednisone and benedryl and a nurse and radiologist will be standing by in case. My cancer was cervical, and I was fortunate to catch it in the early stages so after surgery I did not do the chemo/rads. Although doctors have found adeno cells none cancerous where they don't belong.. and I just mentally have never trusted them. The MRI showed lesions in both kidneys, and suggested that by percentages they are probably cysts.. we will see what the CT results come up with. The blood tests they will most likely do at the endo's office in a week.
And just curious, with your disks.. do you drop things? when you know you are hanging on to them? last fall I just started dropping things with my left hand, and always stumped as to how it happens.. I think it's listening and then just not hanging on sometimes. It's inconsistent too.. but I like when it works with the right!
Kari
Hey Keri,
Yeap and they say it's from those OA symptoms through out body. I giggle at this as I've had the compressed disc's since in my 20's. And have dropped things for years. The hand just goes stupid on me some days. I also get horrid pains in both feet, have for years....also related to the back. Good luck thru all the testing....I'll be thinking good thoughts for you ! Katie
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Waiting
Waiting is the hardest part, and I for one, have no patience and sure wish I did. My husband just underwent a needle biopsy of his lung, with not good results and now on Monday he undergoes another biopsy on his esophagus. Right now I have no nerves and no patience. This is a horrible disease and he has been thru a lot and will be going thru a lot more if the PET/CT scan is right regarding the recurrence in the top part of his esophagus and now the cancer found in his lung. We won't see the oncologist under the results are in from Monday's procedure and as of right now, I think he is not going with further treatment. His choice but like I said something we will have to wait and see.
The waiting is the hardest part of this whole journey and at times I think it is worse than the disease itself. Like everyone says, it's not the big C until the reports say it is.
Sharon
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waiting...Ladylacy said:Waiting
Waiting is the hardest part, and I for one, have no patience and sure wish I did. My husband just underwent a needle biopsy of his lung, with not good results and now on Monday he undergoes another biopsy on his esophagus. Right now I have no nerves and no patience. This is a horrible disease and he has been thru a lot and will be going thru a lot more if the PET/CT scan is right regarding the recurrence in the top part of his esophagus and now the cancer found in his lung. We won't see the oncologist under the results are in from Monday's procedure and as of right now, I think he is not going with further treatment. His choice but like I said something we will have to wait and see.
The waiting is the hardest part of this whole journey and at times I think it is worse than the disease itself. Like everyone says, it's not the big C until the reports say it is.
Sharon
Sharon,
I will be saying prayers, and sewing a pocket on my shirts, and putting you and your husband right there next to my heart. I hope that you get better news. You are correct, it's the waiting that is the worst.
I found when waiting on news for Dan, that I found small things I needed to do for myself, and that's when I tried to sneak a few things in here or there. It helped to distract us from the waiting. I hope you can take advantage of the waiting with something good for yourself. Caretaking for a loved one is a much tougher job than even motherhood was/is... its relentless.
Hugs,
Kari
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