Gleason 9 update & problem

djs123

I haven't written in a while, but as a refresh....my husband was diagnosed with a gleason 9 early January, had 40 imrt treatments and is now on lupron for 7 months. 3 weeks ago his psa (3 months after treatment) was .05. All good, thank the Lord.
He came down with flu like symptoms about a month ago, sore throat, bad cough, terrible weakness and difficulty breathing.
His gp said it was most likely flu or allergies. Gave him an antibiotic 2 weeks after symptoms got progressively worse. It's been a month and he is no better, it hurts his throat to talk and is out of breath with simple walking.
He is having an endoscopy tomorrow, we're not even sure why that was ordered but understand that they need to see what's going on in his throat etc.
Wondering if anyone has experienced this, could this be related to the cancer. I'm so scared right now and I know he is too. Tonight is the second time he's told me he's not sure if he'll make it through the night.
I'm hoping this has nothing to do with the cancer, his bone scan and ct scan came through clean.
If you have any input, I would appreciate hearing it.
Thanks so much
djs123

mrspjd

djs
djs,

So very sorry for you and your husband. I cannot imagine how scared you must be, especially after being told that he doesn’t think he can make it through the night. Wow. If he is having difficulty breathing, call 911 or have a friend drive you both to the ER. Call ahead to your PCa oncologist (or GP or whoever is managing his care) and let him/her know you’re on your way to ER. Then let ER know about the PCa, recent txs and drugs he’s on (bring all his meds/drugs with you if possible, including the recent antibiotics). INSIST that the ER docs do a chest x-ray, blood panel, and that they keep him overnight for observation. You mention that the standard CT and bone scans he had were clean/negative for mets. With his G9 dx, I wonder if he had any other imaging tests to rule out bone mets prior to or following RT, such as EMRI or F-18 (FDG) CT/PET.

Take a deep breath. Slowly exhale. Repeat as needed. I know that doesn’t help much in the eye of the storm, but you have to start somewhere. I wish you both all the best and encourage you to update/post again, as time permits.

djs123

mrspjd said:

djs
djs,

So very sorry for you and your husband. I cannot imagine how scared you must be, especially after being told that he doesn’t think he can make it through the night. Wow. If he is having difficulty breathing, call 911 or have a friend drive you both to the ER. Call ahead to your PCa oncologist (or GP or whoever is managing his care) and let him/her know you’re on your way to ER. Then let ER know about the PCa, recent txs and drugs he’s on (bring all his meds/drugs with you if possible, including the recent antibiotics). INSIST that the ER docs do a chest x-ray, blood panel, and that they keep him overnight for observation. You mention that the standard CT and bone scans he had were clean/negative for mets. With his G9 dx, I wonder if he had any other imaging tests to rule out bone mets prior to or following RT, such as EMRI or F-18 (FDG) CT/PET.

Take a deep breath. Slowly exhale. Repeat as needed. I know that doesn’t help much in the eye of the storm, but you have to start somewhere. I wish you both all the best and encourage you to update/post again, as time permits.

gleason 9 update & problem advice
Thanks so much for your post. I appreciate your input. He is refusing to go the hospital or allow me to call 911. This happened one day last week and we got through the night. I made him some hot with honey and that has seemed to make him feel better. He is now sleeping. I am anxious to see what the endoscopy shows tomorrow.
I heed your advice on getting the other tests, although I must admit a part of me is terrified to think there could be other complications.
I wish you the best and thank you again for your support. It's scary for all of us, but good to have a place to come and vent or seek advice.
God bless

mrspjd

djs123 said:

gleason 9 update & problem advice
Thanks so much for your post. I appreciate your input. He is refusing to go the hospital or allow me to call 911. This happened one day last week and we got through the night. I made him some hot with honey and that has seemed to make him feel better. He is now sleeping. I am anxious to see what the endoscopy shows tomorrow.
I heed your advice on getting the other tests, although I must admit a part of me is terrified to think there could be other complications.
I wish you the best and thank you again for your support. It's scary for all of us, but good to have a place to come and vent or seek advice.
God bless

Difficulty breathing is serious and needs attention immediately
djs,

First things first. Focus. It’s best not to put the cart before the horse. Everyone needs to figure out what’s going on right now, then deal with the other stuff (add’l imaging) later, although they may be related. Why doesn’t he want to go to ER—stoic? I hate/fear hospitals as much as the next person, but sometimes you gotta do what you don’t wanna do. And if he doesn’t want to go to the ER/hospital for this, then I would guess he wouldn’t want to go to the hospital/medical center for bone imaging tests either. The doctors need to identify what is causing the symptoms NOW--the fact that he is having difficulty breathing is very serious. Sorry to be blunt, but if he’s having trouble breathing now, he may not be around to undergo PCa bone imaging later. He needs a chest x-ray and blood panel, STAT, and anything else the ER docs indicate, including being admitted for observation overnight. If he still needs an endoscopy, they’ll call in a gastroenterologist to do it in the hospital. I’m not a medical doctor. It’s anyone’s guess what’s going on—asthma, pneumonia, lung issues, mets, infection? Again, focus on getting him through this episode and let’s hope everything else will work out. Good luck.

worriedabouthubby

mrspjd said:

Difficulty breathing is serious and needs attention immediately
djs,

First things first. Focus. It’s best not to put the cart before the horse. Everyone needs to figure out what’s going on right now, then deal with the other stuff (add’l imaging) later, although they may be related. Why doesn’t he want to go to ER—stoic? I hate/fear hospitals as much as the next person, but sometimes you gotta do what you don’t wanna do. And if he doesn’t want to go to the ER/hospital for this, then I would guess he wouldn’t want to go to the hospital/medical center for bone imaging tests either. The doctors need to identify what is causing the symptoms NOW--the fact that he is having difficulty breathing is very serious. Sorry to be blunt, but if he’s having trouble breathing now, he may not be around to undergo PCa bone imaging later. He needs a chest x-ray and blood panel, STAT, and anything else the ER docs indicate, including being admitted for observation overnight. If he still needs an endoscopy, they’ll call in a gastroenterologist to do it in the hospital. I’m not a medical doctor. It’s anyone’s guess what’s going on—asthma, pneumonia, lung issues, mets, infection? Again, focus on getting him through this episode and let’s hope everything else will work out. Good luck.

This is a medical emergency- do not hesitate
I have asthma. I know what it is like to have severe difficulty breathing. DO NOT HESITATE TO CALL 911 (better that than trying to take him yourself- he'll get seen faster in the ER). It doesn't matter if this is related to the PCa at this point. If he is wheezing, coughing or panting HE NEEDS HELP- PROFESSIONAL MEDICAL HELP! I too have not wanted to go to the ER. I fullly understand his position- but breathing difficulties impact your decision making abilities due to limited Oxygen. The EMTs will probably begin a breathing treatment, start him on oxygen, probably give him a steriod shot, start an IV and get him where even more help can be given. He'll need to have blood work (called 'boold gasses')and it is not plesant because they have to draw blood from an artery rather than a vein, but it will help determine if his lungs are working. He'll also need a chest x-ray to determine if there is fluid on is lungs that could lead to (or already is) pneumonia. They will check his peak flow (see how much air he is taking in and moving out) and do some other things. If he should go into respratory crisis he needs to be in a hospital (and it can happen much faster than you think)- not at home waiting for the ambulance. You need to use a bit of tough love right now and get him the help he needs.
Does your insurance provide you with a 24 hour nurse help line you can call (ours does)? If so call them if you want- they will tell you the same thing- get him to mecial help NOW.

VascodaGama

worriedabouthubby said:

This is a medical emergency- do not hesitate
I have asthma. I know what it is like to have severe difficulty breathing. DO NOT HESITATE TO CALL 911 (better that than trying to take him yourself- he'll get seen faster in the ER). It doesn't matter if this is related to the PCa at this point. If he is wheezing, coughing or panting HE NEEDS HELP- PROFESSIONAL MEDICAL HELP! I too have not wanted to go to the ER. I fullly understand his position- but breathing difficulties impact your decision making abilities due to limited Oxygen. The EMTs will probably begin a breathing treatment, start him on oxygen, probably give him a steriod shot, start an IV and get him where even more help can be given. He'll need to have blood work (called 'boold gasses')and it is not plesant because they have to draw blood from an artery rather than a vein, but it will help determine if his lungs are working. He'll also need a chest x-ray to determine if there is fluid on is lungs that could lead to (or already is) pneumonia. They will check his peak flow (see how much air he is taking in and moving out) and do some other things. If he should go into respratory crisis he needs to be in a hospital (and it can happen much faster than you think)- not at home waiting for the ambulance. You need to use a bit of tough love right now and get him the help he needs.
Does your insurance provide you with a 24 hour nurse help line you can call (ours does)? If so call them if you want- they will tell you the same thing- get him to mecial help NOW.

Other than PCa
DJS 123

Congratulations on the Zeros.

Hopefully doctors find the cause for his recent symptoms. With the PSA at 0.05 ng/ml it would be rare to relate the facts to prostate cancer.

I am sorry that in a time of celebration your husband cannot do so.

Wishing he recovers the soonest.

VG

Samsungtech1

Throat
I burned the roof of my mouth about a month ago. Still has not healed. Beginning to believe cancer has spread there. It should have healed by now. Cancer can go wherever it wants. My Onc said he figured my brain was next. Lookslike he was wrong. Can not prove this but going to a doc next week to see. We all have to deal with this as we see it. My throat has started burning and pain is growing, but not too bad. So what to do? Not sure but I have alot of travel plans that I am going to do so will see how it turns out.
I would have it checked out.

Good luck,

Mike

djs123

Samsungtech1 said:

Throat
I burned the roof of my mouth about a month ago. Still has not healed. Beginning to believe cancer has spread there. It should have healed by now. Cancer can go wherever it wants. My Onc said he figured my brain was next. Lookslike he was wrong. Can not prove this but going to a doc next week to see. We all have to deal with this as we see it. My throat has started burning and pain is growing, but not too bad. So what to do? Not sure but I have alot of travel plans that I am going to do so will see how it turns out.
I would have it checked out.

Good luck,

Mike

gleason 9 update, problem throat & breathing
Wanted to update you since today my husband had an endoscopy today. The doctor found that he has mild acid reflux and a small stomach ulcer. He has prescribed prilosec but also ordered a chest x-ray which was done at the hospital an hour later. The xray found 2 small scars on the left lung, which he said is not in itself a reason for worry but ordered a catscan just to be sure.

After all our discussions about acid reflux with the doctor, it appears that acid reflux can manifest itself in many of the symptoms my husband is experiencing, sore and painful throat, chest pain, difficult breathing and much more. Although he doesn't have all the symptoms that generally accompany acid reflux, I understand it can affect different people in different ways and is sometimes quite difficult to diagnose.

The prilosec should start to work within 3 - 4 days so if he starts to feel much better, we'll know. In the meantime he will have the catscan done to double check the lungs.

Mike, I'm concerned about you and confused about your oncologist saying your brain was next, I hope he was joking! My husbands throat burns also, maybe acid reflux is something for you to look into. My understanding is that prilosec or similar product is not harmful to take and if it works, it will be worth a try. Amazing to me that something that sounds so innocuous could be so painful.

Thanks to all who responded, appreciate it.

Samsungtech1

djs123 said:

gleason 9 update, problem throat & breathing
Wanted to update you since today my husband had an endoscopy today. The doctor found that he has mild acid reflux and a small stomach ulcer. He has prescribed prilosec but also ordered a chest x-ray which was done at the hospital an hour later. The xray found 2 small scars on the left lung, which he said is not in itself a reason for worry but ordered a catscan just to be sure.

After all our discussions about acid reflux with the doctor, it appears that acid reflux can manifest itself in many of the symptoms my husband is experiencing, sore and painful throat, chest pain, difficult breathing and much more. Although he doesn't have all the symptoms that generally accompany acid reflux, I understand it can affect different people in different ways and is sometimes quite difficult to diagnose.

The prilosec should start to work within 3 - 4 days so if he starts to feel much better, we'll know. In the meantime he will have the catscan done to double check the lungs.

Mike, I'm concerned about you and confused about your oncologist saying your brain was next, I hope he was joking! My husbands throat burns also, maybe acid reflux is something for you to look into. My understanding is that prilosec or similar product is not harmful to take and if it works, it will be worth a try. Amazing to me that something that sounds so innocuous could be so painful.

Thanks to all who responded, appreciate it.

Prilosec
I am currently on prilosec. The bleeding in mouth does not have much to do with stomach. I have a, sort of hole, in roof of mouth that bleeds. Know this is not good, but I am really tired of doctors cutting on me or radiaring me. I am sure I could light up a small city with all the radiation I have had. It just wears me out. I do want another dr. Cutting on me or radiating me. Just tired of it. Hopefully I will change my mind, but trip comes first.

Mike

hunter49

Samsungtech1 said:

Prilosec
I am currently on prilosec. The bleeding in mouth does not have much to do with stomach. I have a, sort of hole, in roof of mouth that bleeds. Know this is not good, but I am really tired of doctors cutting on me or radiaring me. I am sure I could light up a small city with all the radiation I have had. It just wears me out. I do want another dr. Cutting on me or radiating me. Just tired of it. Hopefully I will change my mind, but trip comes first.

Mike

Mike what are your current
Mike what are your current PSA levels and what was your Gleason?

djs123

hunter49 said:

Mike what are your current
Mike what are your current PSA levels and what was your Gleason?

Mike - don't give up
Mike

I tried to respond to you last night but was unable to get back on to the website, kept crashing. I am sorry you are going through this and wish you the best. I'm sure you have tried many different things but if you haven't tried swishing your mouth with a mixture of hydrogen peroxide and water, it might be worth a try. You can google "hydrogen peroxide therapy" or similar and you will get a lot of information of the uses of peroxide. When my niece has throat issues she's gargles with it and has had good results.
Enjoy your trips and don't give up. You're in my prayers.