C
carlapv
Nancy,
What wonderful news!!!! I am so pleased for you. This just makes my day.
Carla
What wonderful news!!!! I am so pleased for you. This just makes my day.
Carla
Help Support Valve Replacement Forums:
A
Abbanabba
So glad to see you back and OK Nancy. Hope you're taking it easy.
A : )
A : )
Nancy
Well-known member
Al-
I do remember the members who have had heart damage from radiation. It's been on my mind ever since I learned of my situation. Here's another good one, some of the chemo drugs cause permanent CHF.
The jury's still out on just what I'll need as far as additional therapy. I'm sure radiation will be an absolute, if I want to survive. Possibly chemo too.
Strangely enough, my oncologist has been Joe's hematologist for years, so he knows us well. He's a careful and well-respected doctor.
I have made up my mind that whatever has to be done, I will do. This just came on too fast to take any chances. Even the evil chemo, with all of its side effects. Good chance to take care of any systemic cells lurking about.
I may have second thoughts as I go through whatever--
I do remember the members who have had heart damage from radiation. It's been on my mind ever since I learned of my situation. Here's another good one, some of the chemo drugs cause permanent CHF.
The jury's still out on just what I'll need as far as additional therapy. I'm sure radiation will be an absolute, if I want to survive. Possibly chemo too.
Strangely enough, my oncologist has been Joe's hematologist for years, so he knows us well. He's a careful and well-respected doctor.
I have made up my mind that whatever has to be done, I will do. This just came on too fast to take any chances. Even the evil chemo, with all of its side effects. Good chance to take care of any systemic cells lurking about.
I may have second thoughts as I go through whatever--
Hi Nancy,
When you consider that the reason people are now dealing with radiation injuries is that the radiation was successful, dealing with the long term effects isn't too bad. I always have that bit of suspicion that maybe the radiation treatments I had as a teen-ager affected my valves as well. Some of these things we just may never know.
Just remember, whatever you decide. try not to second guess yourself. I'm sorry it turned into something more extensive than you expected but hope that it was still caught in time. You surely remain in my prayers as I know this is a real trying time for you and Joe.
When you consider that the reason people are now dealing with radiation injuries is that the radiation was successful, dealing with the long term effects isn't too bad. I always have that bit of suspicion that maybe the radiation treatments I had as a teen-ager affected my valves as well. Some of these things we just may never know.
Just remember, whatever you decide. try not to second guess yourself. I'm sorry it turned into something more extensive than you expected but hope that it was still caught in time. You surely remain in my prayers as I know this is a real trying time for you and Joe.
Johnny Stephens
Well-known member
Nancy, for what it's worth, even with the valve damage, the radiation treatments have given me 24 years I wouldn't have otherwise had. I would do it all again, without hesitation. I'm sure shielding must have improved in the intervening years - but let them know your concerns.
Johnny
Johnny
Nancy
Well-known member
I have to keep remembering that this is a breast which is movable and can be positioned in the best way possible. I was very concerned about my thyroid gland because I have an enlarged gland on the same side and it is the only working thyroid that I have. For whatever reason, the other side withered away. It's been biopsied, so is OK. I did discuss this with the oncologist and he told me that it wouldn't be in the field of radiation, so I'm assuming that the scatter of radiation is well controlled now. I think they even tatoo your breast with little pindots to mark the target area.
HaHa, Marco-see--I WILL have a tatoo afterall. All I'll have to do is fill it in with a rose or dragon or a heart
HaHa, Marco-see--I WILL have a tatoo afterall. All I'll have to do is fill it in with a rose or dragon or a heart
G
Georgia
Nancy, I'm delighted to hear you don't have lymph node involvement.
Take all the treatment you can get. I know they don't give chemo lots of times when there're no positive nodes, but I think that's a little dangerous.
I didn't have choices when I had it - it was in a node, so it was the whole shebang for me. Not something I'd like to do again, but if I needed to, I certainly would. There are much better drugs to handle the side-effects of chemo now than 14 years ago.
I'm sorry this whole thing happened. If you have any questions please feel free to email or pm me.
Take all the treatment you can get. I know they don't give chemo lots of times when there're no positive nodes, but I think that's a little dangerous.
I didn't have choices when I had it - it was in a node, so it was the whole shebang for me. Not something I'd like to do again, but if I needed to, I certainly would. There are much better drugs to handle the side-effects of chemo now than 14 years ago.
I'm sorry this whole thing happened. If you have any questions please feel free to email or pm me.
Johnny Stephens
Well-known member
Yep Nancy, they'll tatto you with TINY blue alignment dots to make sure they position you the same way every treatment. I have one on my chin, each shoulder, and the center of my abdomen. A couple have faded over the years and are almost gone. There is no scatter, and they're able to very acurately control the field. They even did a CAT scan on me to see how I was laid out internally.
My thyroid got blasted, and has slowly been withering ever since. I now take 150 mcg of Levoxyl. One of the few drugs that is chemically identical the one your body produces.
My thyroid got blasted, and has slowly been withering ever since. I now take 150 mcg of Levoxyl. One of the few drugs that is chemically identical the one your body produces.
L
Les
Johnny Stephens said:
And I'm glad you are here...and Nancy too!
I know I didn't get tattooed but I have a vague memory of having a box drawn on my chest with something like a magic marker. It was over 40 years ago so it is hard to be certain . I do remember having "sunburned" skin but I really can't remember much more than that.
In distant years, I hope you look back at this and think, "that really wasn't so bad."
Have you had much surgical pain?
. I do remember having "sunburned" skin but I really can't remember much more than that. In distant years, I hope you look back at this and think, "that really wasn't so bad."
Have you had much surgical pain?
Glenda
Well-known member
Hi Nancy I'm so glad that you are home. I had radation in 2000 for breast cancer and I did get little tatoo marks several places on my chest and stomach. I had eight weeks of radiation. It wasn't too bad. I do still have scar's from the radiation in my arm pit area and all that area ia still completely numb, but I guess that is expected. I'm just glad that it's all behind me. I do still wonder if all the radiation, then the chemo that I took for the kidney cancer two years later didn't bring on the leukemia. I guess one will never know.
I'm getting stronger day by day. The only thing, it is so hard for me to eat. I have no appetite. I make myself eat something small every few hours but I sure can't taste it. I'm loosing large amounts of weight, which I needed to do anyway. I'm sure a lot of it is water weight.
You are in my prayers, I hope you continue to get better and better.
I'm getting stronger day by day. The only thing, it is so hard for me to eat. I have no appetite. I make myself eat something small every few hours but I sure can't taste it. I'm loosing large amounts of weight, which I needed to do anyway. I'm sure a lot of it is water weight.
You are in my prayers, I hope you continue to get better and better.
Nancy
Well-known member
I'm really surprised that the surgical pain is so minimal. I took one Lortab in the hospital, and then nothing. I take a little Advil at home, but that's mainly for arthritis. I can move my arm all over, even over my head.
The underarm area is numb after surgery. The surgeon told me that it would be due to injuries to the nerves during the lymph node dissection. That is a weird feeling.
There is a "bunched up" feeling under the arm. The drain is still in and that gets pulled on Tuesday, and there are some steri strips pulling the skin together, plus swelling from the surgery. Should get better after the drain is pulled.
Glenda, I have read that some of the chemo can cause leukemia. It really is a scary thought. I'm so sorry you have to deal with that after all of the other things you have had. There are all kinds of chemo drugs and I won't know what will be in the plan until next Tues. when I meet with the onco.
The underarm area is numb after surgery. The surgeon told me that it would be due to injuries to the nerves during the lymph node dissection. That is a weird feeling.
There is a "bunched up" feeling under the arm. The drain is still in and that gets pulled on Tuesday, and there are some steri strips pulling the skin together, plus swelling from the surgery. Should get better after the drain is pulled.
Glenda, I have read that some of the chemo can cause leukemia. It really is a scary thought. I'm so sorry you have to deal with that after all of the other things you have had. There are all kinds of chemo drugs and I won't know what will be in the plan until next Tues. when I meet with the onco.
B
Bob
Gee whiz I only missed a week
Gee whiz I only missed a week
Gosh I wish I had paid attention to the forum. I saw the post on you and thought,"that has to be another Nancy". But then the flood of replies and I knew. Well, do as you have told so many others and know that you have so many people praying for you the force must be magnificant. Add me to the list.
Gee whiz I only missed a week
Gosh I wish I had paid attention to the forum. I saw the post on you and thought,"that has to be another Nancy". But then the flood of replies and I knew. Well, do as you have told so many others and know that you have so many people praying for you the force must be magnificant. Add me to the list.
ALCapshaw2
Well-known member
Re: Radiation Treatments
I'd LOVE to talk with an Oncologist to see how they are treating Hodgkins (or other malignancies) that occur in the upper body but NOT over the central chest.
Back when I was treated for Hodgkins (questionable cells located in only ONE area - neck -), they also treated the ENTIRE Upper Lymph System, i.e. BOTH sides of the neck, BOTH Armpits, and the central chest (including Heart and Esophagus), 'just in case' to make sure there weren't any 'bad cells' they hadn't detected.
If I had to do it again, I would want a REALLY GOOD reason for radiating the Heart and Esophagus when NO dangerous cells were detected in that area! Anyone know the protocol currently in use vs. the 1960/70's approach?
'AL'
I'd LOVE to talk with an Oncologist to see how they are treating Hodgkins (or other malignancies) that occur in the upper body but NOT over the central chest.
Back when I was treated for Hodgkins (questionable cells located in only ONE area - neck -), they also treated the ENTIRE Upper Lymph System, i.e. BOTH sides of the neck, BOTH Armpits, and the central chest (including Heart and Esophagus), 'just in case' to make sure there weren't any 'bad cells' they hadn't detected.
If I had to do it again, I would want a REALLY GOOD reason for radiating the Heart and Esophagus when NO dangerous cells were detected in that area! Anyone know the protocol currently in use vs. the 1960/70's approach?
'AL'
Nancy
Well-known member
Al-
I couldn't agree with you more. Why, oh why, couldn't they have been more discriminating when treating the Hodgkins? Sometimes I wonder why people blunder into our bodies with a cannon, when a 22 would work just as well. If there is an opportunity, I will ask some questions about what they do now.
One of Joe's doctors said once that nature is so delicate with the structure of the body, and by comparison, we are so clumsy in our efforts to take care of medical problems. Even the most skilled surgeon cannot duplicate nature and will do some or even lots of collateral damage. It's also true for many medications which are almost universally fraught with side efects.
I certainly don't expect to get full chest radiation for a breast tumor. I'll be watching carefully to how they do it. It is important to get any remaining cancer cells taken care of after surgery with radiation and chemotherapy if indicated, for the best chance of survival.
I'll be finding out about that today.
I couldn't agree with you more. Why, oh why, couldn't they have been more discriminating when treating the Hodgkins? Sometimes I wonder why people blunder into our bodies with a cannon, when a 22 would work just as well. If there is an opportunity, I will ask some questions about what they do now.
One of Joe's doctors said once that nature is so delicate with the structure of the body, and by comparison, we are so clumsy in our efforts to take care of medical problems. Even the most skilled surgeon cannot duplicate nature and will do some or even lots of collateral damage. It's also true for many medications which are almost universally fraught with side efects.
I certainly don't expect to get full chest radiation for a breast tumor. I'll be watching carefully to how they do it. It is important to get any remaining cancer cells taken care of after surgery with radiation and chemotherapy if indicated, for the best chance of survival.
I'll be finding out about that today.
M
Mary
Al,
When my mother was diagnosed with nonHodgkin's lymphoma in 1994, she had the nodes surgically removed, had 6 weeks of radiation to the neck area, and also had chemo. At that time, the oncologist told her he didn't "expect a reoccurence for a long time." He said nothing about cure, only a long time before reoccurence.
The reocurrence came this winter with cancerous lymph nodes in the chest
area. She also developed a low grade stomach cancer. I believe that has since resolved. Treatment by chemo almost killed her (did shrink the new tumors) and so has subsequently been put on hold. She is 84 years old, and right now is doing well. Her biggest concern is her mouth. The radiation therapy destroyed her salivary glands and she has lost many teeth. She has been on coumadin for another issue since 97, so you know how that combined with dental problems has caused her a great deal of distress.
However, she says that she has lived ten years that were basically disease free, so the radiation was worth it.
Mary
When my mother was diagnosed with nonHodgkin's lymphoma in 1994, she had the nodes surgically removed, had 6 weeks of radiation to the neck area, and also had chemo. At that time, the oncologist told her he didn't "expect a reoccurence for a long time." He said nothing about cure, only a long time before reoccurence.
The reocurrence came this winter with cancerous lymph nodes in the chest
area. She also developed a low grade stomach cancer. I believe that has since resolved. Treatment by chemo almost killed her (did shrink the new tumors) and so has subsequently been put on hold. She is 84 years old, and right now is doing well. Her biggest concern is her mouth. The radiation therapy destroyed her salivary glands and she has lost many teeth. She has been on coumadin for another issue since 97, so you know how that combined with dental problems has caused her a great deal of distress.
However, she says that she has lived ten years that were basically disease free, so the radiation was worth it.
Mary
M
medtronic of borg
oops
oops
Nancy,
Sorry I have been gone for a bit and just got back on to find this. I am very glad you have found it and it sounds good. I am loosing a aunt to this as I speak. And I lost a very dear friend to it last sept. She fought it a little over fifteen years. But boy did she live it up!!! She was one of our highest respected citizens. She had two masters and was on every board known to man. She was my home room teacher and principal for three years. And that was a while ago. Lara her partner met her and began to date her in 1964. I miss her!!
Sorry that wasn't ment to be a downer....I am GLAD you are being taken care of!
Med
oops
Nancy,
Sorry I have been gone for a bit and just got back on to find this. I am very glad you have found it and it sounds good. I am loosing a aunt to this as I speak. And I lost a very dear friend to it last sept. She fought it a little over fifteen years. But boy did she live it up!!! She was one of our highest respected citizens. She had two masters and was on every board known to man. She was my home room teacher and principal for three years. And that was a while ago. Lara her partner met her and began to date her in 1964. I miss her!!
Sorry that wasn't ment to be a downer....I am GLAD you are being taken care of!
Med
S
Susan BAV
Nancy - Hoping things go very well for you!
N
nadi
Nancy,
I am so sorry to hear about your ordeal. I will keep you in my prayers.
Remember positive thoughts and prayers can and do work miracles.
I am so sorry to hear about your ordeal. I will keep you in my prayers.
Remember positive thoughts and prayers can and do work miracles.
hensylee
Well-known member
Hey there La....
Hey there La....
Beginning to think maybe you dropped off the face. How are you? Nice to see you are still here and perkin along. Lookin back, aren't you glad you hung in there? We are.
Goin to Atlanta in July. I know this tattoo parlor and will take Bonnie with me.
Hey there La....
Beginning to think maybe you dropped off the face. How are you? Nice to see you are still here and perkin along. Lookin back, aren't you glad you hung in there? We are.
Goin to Atlanta in July. I know this tattoo parlor and will take Bonnie with me.
LA_Cruiser said:
