Need Your Opinions on What to do ***UPDATE*** Decision Made!!
Kinda in a dilemma and could use your input. Quick update: Was in remission for 7 months. Got scan early July and showed 5 nodules in lungs with just 2 lighting up on PET/CT. Started back on Folfiri with Avastin July 12th and every two weeks until remission is again achieved. The largest one of approx. 2.5cm now is the only one that concerns me at this time. It was one that was there for round 1 and what we thought had been killed off by chemo...NOT...just knocked in the dirt for a minute and came back with a vengence. THAT ONE...i want GONE. It is in the Hilum area of the lung...close..and needs to be dealt with..now! This is why I checked out cyberknife and found it to be what I needed. All was approved for the Cyberknife.
My plan was.. 1. Restart chemo to knock out new nodules. 2. Cyberknife recurrant tumor. 3. Possibly 5-6 treatments would be all I need to put me back NED...fingers crossed!
Well, today I went and met with the Oncology radiologist. He explained to me that chemo would not stop during the entire cyberknife procedure since no cutting is involved. Cool I thought. That way chemo can keep working at the same time I am knocking out this stubborn ****. Then I was told it would be about 40 days before the actual procedure could begin. Next week I would have to go for lung capacity testing...wait 7-10 days, then go for biopsy and gold bead insertion... which look like gold staples and just "sit" in tissue surrounding nodule...wait 7-10days...go for "vest" fitting...wait 7-10 days...and then start a 4 day procedure of Cyberknife. I thought... ooooook...if thats the way it plays out. BUT...and here's the problem area... IF..by the time the actual cyberknife begins...that the then 5 chemo treatments have shrunk this tumor to 1cm or less....the whole thing is OFF!!! Too small then to deal with.... which puts me back to square 1.... You can't tell me that chemo is going to kill this thing the second time around if it could not do it the first time.... CAN IT??? Thats why I wanted this dealt with in another way..it's in a very bad area and I ain't screwing with "seeing" if chemo will do it..NO NO NO! So what do I do. Stop chemo NOW so it don't shrink it and not worry about the other stuff till the big problem is dealt with??? I am just so friggin confused now i don't know which way to turn.
What would you guys do???? Please throw me some suggestions...advice...anything. AND..after I get into remission again...and I know I will.... I am NOT going back to any chemo of any kind.... I am opting for an alternative method. I have been doing much research and I am ready to try something other than chemo. Why not??? I can always go back to the poison if other stuff don't work. I just am not going to be doing chemo the rest of my life and as it stands now... that seems to be the pattern my stage IV is taking me...not acceptable... will be contacting you John23 with many questions if you don't mind. But ... FIRST i must deal with this.
Thank you all ahead of time for input on this. I cherish all your opinions!
Jennie
****UPDATE****
Just talked to Oncologist. I will have 1 more chemo treatment on August 9th and that will be it before I do the Cyberknife at the end of August. That way I will stay protected as long as possible to try to prevent further growth of other nodules. On the flip side... It won't be enough chemo to shrink the Cyberknife tumor and cause them to cancel the surgery...so YAY....and YAY.... I can't wait!!! Thank you all my semi's for your input and for just listening..... love you all!!!
Jennie
Comments
-
Hi Jennie
I don't have answers for your questions, but I want to wish you well with this, + tell you how much I admire your spirit + the thought you are putting into these decisions. I am sure that someone who knows more than me will come on this thread to help. Good luck + take good care.0 -
Wow Jennie
Talk about a catch 22. I'm not sure what to say. If it were me, I think would do about two rounds of chemo then I would forgo rest of chemo, having my tumor checked to see if growing out of control during the time off of chemo. And while I don't necessarily believe in total natural alternative methods when dealing with cancer, in this case after a couple of chemo's I would try it. Couldn't hurt due to short time (less then 40 days with two rounds of chemo) if keeping an eye on the growth of the tumor at the same time, then if tumor grew to much, back to chemo.
That's quite a position your in, and one hell of a decision you have to make.
Please take my advice with a grain of salt. It's just a "what if I was in your position", which I'm not, so unless faced with it, I'm not sure EXACTLY what I would do at this moment. Just what I might do.
Nothing like a bit of confusion, eh?
And of course John23 would be the natural method Guru to go too.
Prayers your way to be sure.0 -
I'm no guru !!
Jennie -
Seriously - I'm an advocate for the alternatives, and for TCM specifically,
but there are no fantastic words of wisdom emitting from this laptop!
That said.....
The cyberknife technique appears interesting, but scary (to me).
Personally I would seek advice regarding conventional surgery.
My mother (long gone) had 1/2 lung removed, never stopped
smoking the 3-4 packs a day, and went over 14 years after surgery,
doing quite well, I might add.. The lung cancer finally got her, but
under the circumstances, it was not a shock.
(She was cremated, and we didn't know if we should spread her
ashes in the garden, or fill the empty ashtrays as a parting gesture)
(mom had a sense of humor too)
The cyberknife scares me, since although they do a really neat
job of pin-pointing the radioactivity, it still has to go through an
awful lot of good skin, organs, and nerves, regardless of how
well they aim the blasted thing.
If it was the absolute only way to get to the cancer, and conventional
surgery is totally impossible, and taking out the damned lung is not
an option, I probably would go for it.... but that's me, not you...
That would be the criteria for cyberknife for me; last ditch.
Didn't mean to scare you... and I hope I didn't. The most important
thing is to stop cancer from killing you, and if it's in a location that
requires speed and immediacy, western medicine surgical techniques
are probably the best line of attack.
They have "freezing" techniques, that can kill a tumor, but they have
to get to it; invasive......
The cyberknife is just as invasive, though. Instead of poking a wire
or knife through you, they use a beam of radiation; it's still going
through you, just as a knife would. (oops, there I go again)
Don't rush. You have some time to think it through. I would very,
very seriously consider losing part of a lung, rather than attempting
to save it all, and perhaps suffer longer due to the quest.
Options..... You have 'em kid! Explore them all.
You're not going anyplace for awhile, so drop the fear and let
your inner intuition be your guide!
Healthy thoughts comin' at ya'!
John0 -
This comment has been removed by the ModeratorJohn23 said:I'm no guru !!
Jennie -
Seriously - I'm an advocate for the alternatives, and for TCM specifically,
but there are no fantastic words of wisdom emitting from this laptop!
That said.....
The cyberknife technique appears interesting, but scary (to me).
Personally I would seek advice regarding conventional surgery.
My mother (long gone) had 1/2 lung removed, never stopped
smoking the 3-4 packs a day, and went over 14 years after surgery,
doing quite well, I might add.. The lung cancer finally got her, but
under the circumstances, it was not a shock.
(She was cremated, and we didn't know if we should spread her
ashes in the garden, or fill the empty ashtrays as a parting gesture)
(mom had a sense of humor too)
The cyberknife scares me, since although they do a really neat
job of pin-pointing the radioactivity, it still has to go through an
awful lot of good skin, organs, and nerves, regardless of how
well they aim the blasted thing.
If it was the absolute only way to get to the cancer, and conventional
surgery is totally impossible, and taking out the damned lung is not
an option, I probably would go for it.... but that's me, not you...
That would be the criteria for cyberknife for me; last ditch.
Didn't mean to scare you... and I hope I didn't. The most important
thing is to stop cancer from killing you, and if it's in a location that
requires speed and immediacy, western medicine surgical techniques
are probably the best line of attack.
They have "freezing" techniques, that can kill a tumor, but they have
to get to it; invasive......
The cyberknife is just as invasive, though. Instead of poking a wire
or knife through you, they use a beam of radiation; it's still going
through you, just as a knife would. (oops, there I go again)
Don't rush. You have some time to think it through. I would very,
very seriously consider losing part of a lung, rather than attempting
to save it all, and perhaps suffer longer due to the quest.
Options..... You have 'em kid! Explore them all.
You're not going anyplace for awhile, so drop the fear and let
your inner intuition be your guide!
Healthy thoughts comin' at ya'!
John0 -
AnneCanAnneCan said:Hi Jennie
I don't have answers for your questions, but I want to wish you well with this, + tell you how much I admire your spirit + the thought you are putting into these decisions. I am sure that someone who knows more than me will come on this thread to help. Good luck + take good care.
Thank you so much for your support. It means a lot
Jennie0 -
herdizzinessherdizziness said:Wow Jennie
Talk about a catch 22. I'm not sure what to say. If it were me, I think would do about two rounds of chemo then I would forgo rest of chemo, having my tumor checked to see if growing out of control during the time off of chemo. And while I don't necessarily believe in total natural alternative methods when dealing with cancer, in this case after a couple of chemo's I would try it. Couldn't hurt due to short time (less then 40 days with two rounds of chemo) if keeping an eye on the growth of the tumor at the same time, then if tumor grew to much, back to chemo.
That's quite a position your in, and one hell of a decision you have to make.
Please take my advice with a grain of salt. It's just a "what if I was in your position", which I'm not, so unless faced with it, I'm not sure EXACTLY what I would do at this moment. Just what I might do.
Nothing like a bit of confusion, eh?
And of course John23 would be the natural method Guru to go too.
Prayers your way to be sure.
A catch 22 is exactly where I feel I am. Thank you for your opinion. It really helps to hear what others think. You take care!
Jennie0 -
Hey JohnJohn23 said:I'm no guru !!
Jennie -
Seriously - I'm an advocate for the alternatives, and for TCM specifically,
but there are no fantastic words of wisdom emitting from this laptop!
That said.....
The cyberknife technique appears interesting, but scary (to me).
Personally I would seek advice regarding conventional surgery.
My mother (long gone) had 1/2 lung removed, never stopped
smoking the 3-4 packs a day, and went over 14 years after surgery,
doing quite well, I might add.. The lung cancer finally got her, but
under the circumstances, it was not a shock.
(She was cremated, and we didn't know if we should spread her
ashes in the garden, or fill the empty ashtrays as a parting gesture)
(mom had a sense of humor too)
The cyberknife scares me, since although they do a really neat
job of pin-pointing the radioactivity, it still has to go through an
awful lot of good skin, organs, and nerves, regardless of how
well they aim the blasted thing.
If it was the absolute only way to get to the cancer, and conventional
surgery is totally impossible, and taking out the damned lung is not
an option, I probably would go for it.... but that's me, not you...
That would be the criteria for cyberknife for me; last ditch.
Didn't mean to scare you... and I hope I didn't. The most important
thing is to stop cancer from killing you, and if it's in a location that
requires speed and immediacy, western medicine surgical techniques
are probably the best line of attack.
They have "freezing" techniques, that can kill a tumor, but they have
to get to it; invasive......
The cyberknife is just as invasive, though. Instead of poking a wire
or knife through you, they use a beam of radiation; it's still going
through you, just as a knife would. (oops, there I go again)
Don't rush. You have some time to think it through. I would very,
very seriously consider losing part of a lung, rather than attempting
to save it all, and perhaps suffer longer due to the quest.
Options..... You have 'em kid! Explore them all.
You're not going anyplace for awhile, so drop the fear and let
your inner intuition be your guide!
Healthy thoughts comin' at ya'!
John
Well, that was a twist I wasn't expecting. I mean the fact that you would opt for surgery over Cyberknife. To me surgery would be a last ditch. I just can't see cutting away a part of my lung ONLY to have nodules return within inches of where they just cut off. Then what? More cutting...and cutting..until what? Lungs are ate up and it moves elsewhere to be cut out too???? I guess it will ALWAYS be "then what" The surgeons have all told me that Cyberknife presents less than a 5% chance that any other area would be damaged by the radiation. Actual consent form reads "Risks: skin irritation, fatigue, damage to normal lungthat may include scarring, rare airway collapse/narrowing, rare radiation pneumonitis, rare hemorrhage,rare damage to esophagus, spinal cord, chestwall, ribs and heart" John, you always have back up on most everything you say.... do you have any place I can go read about these damaging side effects from Cyberknife? I have been looking for something on that aspect of the surgery. thank you so much for your input and honesty. I so appreciate seeing it from all sides. Makes me see things I might not have otherweise seen.
Jennie0 -
From Texas With Love.....idlehunters said:Hey John
Well, that was a twist I wasn't expecting. I mean the fact that you would opt for surgery over Cyberknife. To me surgery would be a last ditch. I just can't see cutting away a part of my lung ONLY to have nodules return within inches of where they just cut off. Then what? More cutting...and cutting..until what? Lungs are ate up and it moves elsewhere to be cut out too???? I guess it will ALWAYS be "then what" The surgeons have all told me that Cyberknife presents less than a 5% chance that any other area would be damaged by the radiation. Actual consent form reads "Risks: skin irritation, fatigue, damage to normal lungthat may include scarring, rare airway collapse/narrowing, rare radiation pneumonitis, rare hemorrhage,rare damage to esophagus, spinal cord, chestwall, ribs and heart" John, you always have back up on most everything you say.... do you have any place I can go read about these damaging side effects from Cyberknife? I have been looking for something on that aspect of the surgery. thank you so much for your input and honesty. I so appreciate seeing it from all sides. Makes me see things I might not have otherweise seen.
Jennie
Jennie
Well, I just got through one of the roughest lung surgeries there is close to having a whole lung removed - and I survived it.
They took out quite a bit of my lung (lower right lobe) as the tumor had burrowed itself into my ribs and my chest wall cutting off my breathing and causing me great pain. I was told it was very major, major lung surgery.
Of course, done by one of the finest surgeons the United States has to offer and right here in the Big D.
I like surgery when I've got a chance at removal of tumor - feel it gives one the best shot and then we can clean up with other techniues. Like I might need radiation and chemo again too - I've got to set up appts and consult with those doctors to put the 2nd half of my plan together.
Having completed NINE (9) surgeries in 6 years 1 month, I speak from a great deal of real world application and experience.
Don't know if my opinion counts, but that's my take on it. I wish you would board a plane and get a consult with my man - he's just been selected as one of the top 6 surgeons in the nation on the Davinci robot and is now going out in the U.S. to teach other surgeons about this technique.
And what do I do if it comes back again on me? Well, attack, attack, attack. With surgery, surgery, surgery and whatever else we can throw at it.
I've told you before we can't worry about tomorrow, when we're fighting so hard TODAY!
All my love:)
-Craig0 -
CRAIG!!!Sundanceh said:From Texas With Love.....
Jennie
Well, I just got through one of the roughest lung surgeries there is close to having a whole lung removed - and I survived it.
They took out quite a bit of my lung (lower right lobe) as the tumor had burrowed itself into my ribs and my chest wall cutting off my breathing and causing me great pain. I was told it was very major, major lung surgery.
Of course, done by one of the finest surgeons the United States has to offer and right here in the Big D.
I like surgery when I've got a chance at removal of tumor - feel it gives one the best shot and then we can clean up with other techniues. Like I might need radiation and chemo again too - I've got to set up appts and consult with those doctors to put the 2nd half of my plan together.
Having completed NINE (9) surgeries in 6 years 1 month, I speak from a great deal of real world application and experience.
Don't know if my opinion counts, but that's my take on it. I wish you would board a plane and get a consult with my man - he's just been selected as one of the top 6 surgeons in the nation on the Davinci robot and is now going out in the U.S. to teach other surgeons about this technique.
And what do I do if it comes back again on me? Well, attack, attack, attack. With surgery, surgery, surgery and whatever else we can throw at it.
I've told you before we can't worry about tomorrow, when we're fighting so hard TODAY!
All my love:)
-Craig
So happy to hear from you dude!!! I know you have been to hell and back. Thank God you are on your way to recovery!!!! I have set up another meeting with my Oncologist and the thoracic surgeon. I need more answers before I make a final decision on anything. I have kept your Doc in the back of my mind. He has been a miracle worker for you so YES.... he is on the list of possibilities. AND.... your opinion ALWAYS counts...u crazy? It's so good to see you on the boards again.... I was getting worried..... You take care my friend.
Luv to u!
Jennie0 -
We honestly didn't expect any less from you !!!idlehunters said:CRAIG!!!
So happy to hear from you dude!!! I know you have been to hell and back. Thank God you are on your way to recovery!!!! I have set up another meeting with my Oncologist and the thoracic surgeon. I need more answers before I make a final decision on anything. I have kept your Doc in the back of my mind. He has been a miracle worker for you so YES.... he is on the list of possibilities. AND.... your opinion ALWAYS counts...u crazy? It's so good to see you on the boards again.... I was getting worried..... You take care my friend.
Luv to u!
Jennie
Welcome back Superman.......:) ..........Buzz
and Jennie.......let your brain do what its intended to do for you..make rational decisions in your treatment...you will do fine sweetie.......Love to ya, Buzz0 -
Thankssnommintj said:rapidarc or novalis
If they can gamma knife it, they can rapidarc or novalis it. they should be able to get to it quicker and treat it in just a few minutes.
Thanks Gracie...Buzz...and Gail! ... and snommintj... I did look into Novalis. They advertised speedier radiation time but when I spoke to the onc. radiologist.... he said same amt. of rad as cyberknife machine they use here... but he felt CK better... like I said..HIS opinion. The gamma knife is something I will look into further...thank you for the heads up!
Jennie0 -
Jennie:
I can only offer my personal thoughts on this. If George were to ever be offered the options you are, surgery vs radiation, and considering George's age, if he asked me "what should I do" my gut tells me to tell George, radiation, and if needed later, the surgery. So Dear Jennie, I am telling you to follow your gut, follow what your heart tells you is good for you.
Now we got two major cancer centers within an hour of home, Karmanos Cancer Institute and the University of Michigan. I would seek opinions from them and where we are currently being treated, and base my decision on those opinions.
Wishing you nothing but the best as you make a most difficult decision and remember, whaterver you decide, you are deciding what is best for you and make that decision on solid research and opinions and never, second guess whatever you decide is best for you.
A long time ago I questionsed the docs several times about radiation for George's mets. I always got the same answer, we need to reserve that for when it is needed. I never quite understood at the time the "reserve it" but now I do.
I think of you often - Tina0 -
Hey Tina!geotina said:Jennie:
I can only offer my personal thoughts on this. If George were to ever be offered the options you are, surgery vs radiation, and considering George's age, if he asked me "what should I do" my gut tells me to tell George, radiation, and if needed later, the surgery. So Dear Jennie, I am telling you to follow your gut, follow what your heart tells you is good for you.
Now we got two major cancer centers within an hour of home, Karmanos Cancer Institute and the University of Michigan. I would seek opinions from them and where we are currently being treated, and base my decision on those opinions.
Wishing you nothing but the best as you make a most difficult decision and remember, whaterver you decide, you are deciding what is best for you and make that decision on solid research and opinions and never, second guess whatever you decide is best for you.
A long time ago I questionsed the docs several times about radiation for George's mets. I always got the same answer, we need to reserve that for when it is needed. I never quite understood at the time the "reserve it" but now I do.
I think of you often - Tina
Wow..... thank you for the thoughts and words. I really FELT what you were saying. I just have this VERY STRONG feeling telling me to get this met out of me...now. It's not in a good place and I feel nothing but future trouble with it. I just know chemo ain't gonna kill it... maybe shrink it... but I need it gone. The other mets are new and small and can be dealt with later..... this one is just bugging the heck out of me. Yep..it's gotta go. If I have to stop chemo now the others MAY grow...but at least it will stop the big one from shrinking and then they will Cyberknife it... and it will be gone...and I will feeel better .... then I can move on to phase 2 of getting the other little bugers! thanks Tina.... I too keep you and George on my mind and in my prayers.
Jennie0 -
Hi Jennie,I am glad to know
Hi Jennie,I am glad to know you have a plan.I hope nothing but the best for you.You are in my prayers as always.Best wishes and best luck to you.Take care.0 -
I think
I think I’d do the less “Invasive” first with the radiation. Then they can always go in a cut it out if that don’t work.
Brooks0 -
Jennie -idlehunters said:Hey John
Well, that was a twist I wasn't expecting. I mean the fact that you would opt for surgery over Cyberknife. To me surgery would be a last ditch. I just can't see cutting away a part of my lung ONLY to have nodules return within inches of where they just cut off. Then what? More cutting...and cutting..until what? Lungs are ate up and it moves elsewhere to be cut out too???? I guess it will ALWAYS be "then what" The surgeons have all told me that Cyberknife presents less than a 5% chance that any other area would be damaged by the radiation. Actual consent form reads "Risks: skin irritation, fatigue, damage to normal lungthat may include scarring, rare airway collapse/narrowing, rare radiation pneumonitis, rare hemorrhage,rare damage to esophagus, spinal cord, chestwall, ribs and heart" John, you always have back up on most everything you say.... do you have any place I can go read about these damaging side effects from Cyberknife? I have been looking for something on that aspect of the surgery. thank you so much for your input and honesty. I so appreciate seeing it from all sides. Makes me see things I might not have otherweise seen.
Jennie
Re:
"John, you always have back up on most everything you say.... do
you have any place I can go read about these damaging side
effects from Cyberknife? "
You already provided as much as anyone else can.
Re:
"Actual consent form reads:
"Risks: skin irritation, fatigue, damage to normal lung that may
include scarring, rare airway collapse/narrowing, rare radiation
pneumonitis, rare hemorrhage, rare damage to esophagus, spinal
cord, chest wall, ribs and heart" "
That about sums it up!
People see the word "cyber" and think "cyberspace"; that place you
can't see or feel, and what goes through is is undetectable.....
Yeah, really.
A "cyberknife" is far from that concept; let me give you a example;
a hypothetical, if you will.....
If I told you I can use high powered rifles to shoot that cancer
cluster to obscurity, and put bullet-proof glass behind it, so the
bullets won't ruin your upholstery.... I think you would have some
pretty damned un-lady like words for me, right?
(not that it wouldn't turn me incredibly on)
But that's essentially what a "cyberknife" does. It's shooting bullets
of radiation through your body, to that "bullet-proof" shield behind
the tumor. And those "bullets" are going to damage whatever it
goes through, from point A to point B.
The radiation also isn't "contained" to a specific area, whereas
it will radiate around and into surrounding organs from it's entry
point, to the target.
The radiation also does damage to cells, of the skin and organs,
and to the cells flowing in your arteries and veins. Damage to
cells causes cancer, as you probably have heard already.
It is -every bit- (if not more) invasive as surgery, and carries
more side effects and risks.
So..... what is left to say? It's a neat technology, but not without
it's extreme set of hazards. If it's the absolute only thing that
can be done to save your life, that will very soon end without it,
I'd probably opt in..... If I had time for conventional surgery,
I would travel to wherever a proficient surgeon is, that can do
it without killing me.
Not to scare you, but you did ask me....
Stay well !! (I'm rooting for you)
(say a dirty word for me, willya'? thanks)
John0
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