Be sure to stay checked in with your internist during rad & chemo

pk

My husband and I have learned thru this experience how important it is to check in with your OWN Dr. Our internist has been awesome and offered options that the oncologists didn't. For instance - he discovered thrus in the throat and prescribed a great script. to help - really improved the awful taste that occurs with rad and chemo. Thrush is a very common side effect of the radiation treatment. He also noticed that my hubs. blood pressure was low and changed his medication for that.
Your own Dr. will also be able to help you with pain meds, sleeping aides. etc. in a way that the oncos don't always take the time to do. Do it. You will be glad you did.
PK

newbride

Good Advice
That is good advice as second opinions are always very helpful. Although I'm surprised that your husbands oncologists haven't been monitoring him as closely. My husbands's medical oncologist is constantly taking blood, checking blood pressure, weight, etc and changing prescriptions accordingly. As for the thursh from radiation my husband's radiation oncologist checked him regularly for symptoms and as soon as he noticed the first sign immediately prescribed fluconaze (I don't think I spelled that right). He also prescribed antibiotics to prevent infections on his skin from the radiation as well as prescribing an ointment to help alleviate the burning feeling from the radiation.

pk

newbride said:

Good Advice
That is good advice as second opinions are always very helpful. Although I'm surprised that your husbands oncologists haven't been monitoring him as closely. My husbands's medical oncologist is constantly taking blood, checking blood pressure, weight, etc and changing prescriptions accordingly. As for the thursh from radiation my husband's radiation oncologist checked him regularly for symptoms and as soon as he noticed the first sign immediately prescribed fluconaze (I don't think I spelled that right). He also prescribed antibiotics to prevent infections on his skin from the radiation as well as prescribing an ointment to help alleviate the burning feeling from the radiation.

Dear Newbride,
Yup, his radiation oncologist sees hime once a week for sure and any other day that he wants to ask a question or has a concern. The only thing he doesn't do regularly is check blood pressure. The chemo onco checks it but not every week - only the weeks he sees him with a scheduled appt. Now that we know his is low, we will definitely request that it's checked.. His onco has also been good about changing prescriptions as needed. But my hub. has a very close relationship with internist and has to check in every 6 mo. as he is also a heart patient(doing extremely well, I might add) so the blood pressure thing showed up when he went in. Also, as you know, weight loss is an issue with this treatment, and the loss of weight now will probably allow him to go off his blood pressure meds.
How is your husbands neck looking? My husband only has 5 rads left and so far no broken skin or burns.
PK

newbride

pk said:

Dear Newbride,
Yup, his radiation oncologist sees hime once a week for sure and any other day that he wants to ask a question or has a concern. The only thing he doesn't do regularly is check blood pressure. The chemo onco checks it but not every week - only the weeks he sees him with a scheduled appt. Now that we know his is low, we will definitely request that it's checked.. His onco has also been good about changing prescriptions as needed. But my hub. has a very close relationship with internist and has to check in every 6 mo. as he is also a heart patient(doing extremely well, I might add) so the blood pressure thing showed up when he went in. Also, as you know, weight loss is an issue with this treatment, and the loss of weight now will probably allow him to go off his blood pressure meds.
How is your husbands neck looking? My husband only has 5 rads left and so far no broken skin or burns.
PK

PK
He's a mess, between the rash from the Erbitux and the radiation itself. I'm not sure what type of radiation dosing your husband is getting but mine had high dose twice a day. His last treatment was on Thursday and his skin is still hot. But he has been using Aquaphor and seems to be more comfortable with that. He's eyes get very crusty in the morning and there is small breaks in the skin which bleed right under his eyes. His neck is fine because they were mostly concentrating the radiation to his nasal area and upper lip.

pk

newbride said:

PK
He's a mess, between the rash from the Erbitux and the radiation itself. I'm not sure what type of radiation dosing your husband is getting but mine had high dose twice a day. His last treatment was on Thursday and his skin is still hot. But he has been using Aquaphor and seems to be more comfortable with that. He's eyes get very crusty in the morning and there is small breaks in the skin which bleed right under his eyes. His neck is fine because they were mostly concentrating the radiation to his nasal area and upper lip.

Let's face it - this is just
Let's face it - this is just a crappy deal all the way around. I read your other post and I know your frustration. My husband sleeps an awful lot too. He does try to take our dog out to the country to let him run everyday a visit a friend, but it wipes him out. Only 5 rads left for him and then on to where you guys are at. From everything I learned the recovery does take a long time and the fatigue continues on for quite sometime. I too would like to rush my husband along a little bit faster than things are going, but I don't think it's possible. Patience, patience, patience-something I'm not good at.
We leave for St. Simons Island March 1st. so we're trying to set a goal to be off the feeding tube and healed up so that he can enjoy swimming in the ocean, pool and sitting in the sun.
Sometimes I forget that all they have been injected with is so terribly powerful that it kills body tissue - no wonder......

newbride

pk said:

Let's face it - this is just
Let's face it - this is just a crappy deal all the way around. I read your other post and I know your frustration. My husband sleeps an awful lot too. He does try to take our dog out to the country to let him run everyday a visit a friend, but it wipes him out. Only 5 rads left for him and then on to where you guys are at. From everything I learned the recovery does take a long time and the fatigue continues on for quite sometime. I too would like to rush my husband along a little bit faster than things are going, but I don't think it's possible. Patience, patience, patience-something I'm not good at.
We leave for St. Simons Island March 1st. so we're trying to set a goal to be off the feeding tube and healed up so that he can enjoy swimming in the ocean, pool and sitting in the sun.
Sometimes I forget that all they have been injected with is so terribly powerful that it kills body tissue - no wonder......

Yes, it's horrible
It is a crappy deal. I wish I could get my husband to go away for a weekend or so. Problem is (and I don't blame him a second) is that without his upper teeth he has no choice but to use the peg tube so what fun is going away if you can't enjoy the food all around.

I think after the scan in 2 weeks things may be better - or at least we will have some answers - good or bad - to prepare for what is next.

I am totally not a good patient person -- I want things now, I want answers now -- always have been that way so these next 2 weeks will be torture for me.

But all in all we need closure to this whether it's good - and start the healing process or bad and keep him comfortable. Whatever it is I need answers.

pk

newbride said:

Yes, it's horrible
It is a crappy deal. I wish I could get my husband to go away for a weekend or so. Problem is (and I don't blame him a second) is that without his upper teeth he has no choice but to use the peg tube so what fun is going away if you can't enjoy the food all around.

I think after the scan in 2 weeks things may be better - or at least we will have some answers - good or bad - to prepare for what is next.

I am totally not a good patient person -- I want things now, I want answers now -- always have been that way so these next 2 weeks will be torture for me.

But all in all we need closure to this whether it's good - and start the healing process or bad and keep him comfortable. Whatever it is I need answers.

Patience
I am also the type of person who wants everything resolved NOW!!! This is a real test of our ability to go with the flow of life. I am not worrying as much about this. I feel that the result will be good. Keep the faith. Things will resolve and eventually our hubs will be going out to dinner with us again.

newbride

pk said:

Patience
I am also the type of person who wants everything resolved NOW!!! This is a real test of our ability to go with the flow of life. I am not worrying as much about this. I feel that the result will be good. Keep the faith. Things will resolve and eventually our hubs will be going out to dinner with us again.

I wish
I wish I could be as positive as you. In front of my husband I am and keep telling him we will get through this - that we are just getting the "in sickness" out of the way of our vows so we can move onto better things.

So I try not to let him see me cry.

However, due to the unusualness of his tumor (being only the 3rd reported case in the world and only one in North America) it has so hard especially when each doctor says to you "this is so unusual" or "we really don't know".

That's the worse. The surgeon already told me - and I didn't tell my husband, that this type of cancer when it appears where it is suppose to, is usually low grade and responds great to surgery -- well, my husband's tumor I guess got pissed off with the surgery because when it came back it came back extremely agressive and very high grade!! That's what scares me most.

Also, the fact that he had surgery on June 24 and the week before he was suppose to start rad/chemo the tumor came back again!!

pk

newbride said:

I wish
I wish I could be as positive as you. In front of my husband I am and keep telling him we will get through this - that we are just getting the "in sickness" out of the way of our vows so we can move onto better things.

So I try not to let him see me cry.

However, due to the unusualness of his tumor (being only the 3rd reported case in the world and only one in North America) it has so hard especially when each doctor says to you "this is so unusual" or "we really don't know".

That's the worse. The surgeon already told me - and I didn't tell my husband, that this type of cancer when it appears where it is suppose to, is usually low grade and responds great to surgery -- well, my husband's tumor I guess got pissed off with the surgery because when it came back it came back extremely agressive and very high grade!! That's what scares me most.

Also, the fact that he had surgery on June 24 and the week before he was suppose to start rad/chemo the tumor came back again!!

This is really tough for
This is really tough for you. And there's not a damn thing I can tell you to make you worry go away. BUT good things can and do happen. Atleast hope for that. I do hold you in my heart. PK

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