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Judy M.

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Just saw Med. Oncologist. The original plan was radiosurgery on all 3 lung nodules plus mild chemo. New plan is radiosurgery on largest (3cm.) Nodule in left lung and reg. Radiation + mild chemo on 2 small nodules (less than 1 cm.) In right lung. The reason being that the Radiology Oncologist doing the planning didn't think he could do radiosurgery on the 2 in my right lung. Could that be because they're too small? Glad the plan is now in place and should be able to get started next Monday. That's the good news. Not so good news is that the cancer tested negative for all the targeted therapy markers. Immunotherapy testing isn't in yet. Feeling good today and thankful for that. Hope the rest of you guys are also.

God bless you all.

Judy M

 

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Judy,

Well you have a treatment plan. The stereotactic radiation worked for me and so did the regular radiation and mild chemo.  I wouldn't have a definitive reason for not doing stereotactic radiation on the 2 small nodules except the papers I read about Stage IV stereotactic radiation suggest some risk and uncertainty.  It could also be a concern about the location of the small nodules, perhaps too close to sensitive anatomy.  It is a good question for you doctor, however.

You might share details about the type of chemo you are going to have.  We can then give you a heads up on side effects and ways to avoid or minimize them.

Stay the course.

Tom

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Tom,
Where did you find articles showing risks and uncertainties in treating stage IV with stereotactic surgery? I'd like to read those. I think the short way of referring to the chemo I'll be receivjng is carbo/taxel? Is that right. N.P. talked to me about risks and side effects of chemo. She mentioned the taxel or taxol (don't yet know the spelling) is also used to treat breast cancer. I hope it isn't the one that can cause permanent hair loss. Bald for a while is a bump in the road, balk foever a boulder.
Judy M

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My son says he hates the keyboard on my phone. Right now I do too. Sry about all the mistakes.
Judy

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Oh, and I want to add that my Oncologist told me today that he took the Radiologist to some medical site ( can't remember all these terms but I have it recorded and can find it if anyone wants to know) and stereotactic surgery is now standard of care for stage IV. Good news I think.

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Suzanne
Thank you so much. I'm sorry to hear that you"re sad. It seems the longer time I've had to pray and come to accept my diagnosis the easier it has become emotionally. I'm a big fan of Elizabeth Elliot. She counseled that when something really awful happens you should think of what you'd be doing if it hadn't happened and do that. She called it 'doing the next thing.' That has helped. And doggedly turning my mind to good thoughts each time I start to obsess over the situation. Which is so easy to do. Especially on days that I see a doctor. That doesn't change anything. Just ruins the good time I could have had if I wasn't doing that. And my obsessing won't change anything. I guess I'm saying that I'm just trying to accept the things I can't change and keep a quiet mind. I can't control what the disease may do to my body, but with God's help I can control what I let it do to my mind. I'm going to pray for you every day. Let me know what you learn about your planned treatment.
Judy M

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Judy,

Cindy0121 asked the same question about stereotactic radiation for Stage IV. I sent her four or five links of the papers I've read on the topic. Check her profile and activity for my reply with links. 

Stay the course. 

Tom

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Judy,

Do you mean Taxol and Carplatin are the drugs you'll receive? I had 18 infusions of this pairing. Rest assured, baldness is a temporary side effect. 

Stay the course. 

Tom

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Tom,
Thank you. I found those and have read 1 of the articles. Will read the others. It does concern me somewhat that there seems to have been some disagreement between my Medical Oncologist and Radiology Oncologist on how best to treat me. Seems they brought on another Radiologist to help plan the radiosurgery. The way it was explained to me today is that they're treating each lung as a separate cancer. Rather unique way of looking at it. But I had prayed and decided whatever plan was mapped out I'd accept as God's will. And so far as I can tell there are no guarantees with any treatment plan when it comes to this anyway. You just soldier on. Tried to find your book to read but only found it available on Amazon for Kindle. Is there anywhere I can get another format. Thanks for being there for all of us.
Judy M

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Have yet another question after confirming the chemo I'll be having. It will be carboplatin/taxol. This appears from my research to be a standard combo. Learned there's about 100% chance I'll lose my hair with taxol, but the greatest chance of that being a permanent situation appears to be with taxtere which is a similar drug. My question is whether there are any vitamins I shouldn't take during treatment. Also, for my ladies who also had breast cancer previous to lung cancer learned yesterday I must stop taking the anastrozole that I take daily to prevent breast cancer from returning during my chemo. Got this info in answer to a question I ask during chemo education with N.P. I don't think she had thought of this because she had to look it up. Probably because the 2 primary cancers thing isn't the norm. So, my sisters in this situation might want to ask the same question if any of you are taking hormone blocking medication. Also, has anyone tried juicing during treatment? Read a bit about this. Don't know whether it promotes healing, but even if it doesn't would seem an easy way to get those fruits and veggies the docs want you eating.
Judy M

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Tom
Just saw your response to my baldness question. Thank you for replying. And, as you see from previous post that is what I'll be receiving. Good to know hair will grow back. Just need to get prepared for it with something to cover my head until that happens. Since it seems I have a couple of weeks before chemo starts I'm trying to get as prepared as possible for it.
Judy M

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Judy,

On the different approaches between oncologists, consider the bias is to treat conventionally applying the accepted "standard of care."  When a new innovation or approach hits the medical community, there is often a resistance to embrace because it is counter to a standard of care.  And, this is a good thing in my view.  Doctors and patients want medical treatment results to be repeatable and predictable.  What works on one patient ought to work on another.  Thus the standard of care approach.

But, I've encountered doctors who are willing to consider alternatives and in my case, it was after the standard of care options failed to demonstrate results.  Then, the art of medicine -- what to do -- becomes more important than the science -- how to do it.

When I received my SBRT in 2007, I wondered why this technology couldn't be applied to address more than one tumor.  While stereotactic methods had be used successfully against brain mets, using these methods in a respirating lung was much more complicated.  The target tumor was in constant motion and so precise control was required.  The technology had to mature and thankfully I was fortunate it did just in time to treat my chemo-resistant tumor.  So, all of the enabling technology was about keeping the apparatus aimed at a moving target.  That solved, think of the complexity and the risk of employing this powerful radiation in two areas in close proximity.  Even if not concurrent, the radio oncologist needs to account for the amount of total radiation received, not from one stereotactic treatment, but two (recall SBRT is powerful, focused radiation that passes completely through the body). But trying to account for the total amount of powerful radiation, its application paths, and safety margins on one tumor is difficult; adding a second tumor in close proximity (5 to 6 inches between tumors) increases the level of difficulty exponentially.  As an engineer, I can appreciate the technical complexity and sense the risk involved.  So I understand the reluctance.  

Remember also, that professional disagreements and productive debate of the advantages and disadvantages are what results in advances in science, engineering and medicine. The pace appears slow, especially in today's world of software driven innovation.  But computer programmers have the advantage of testing-fixing-testing quickly and doing so in an environment that causes no harm (a program within a computer).  Proving a new recipe for concrete, inventing a new automobile breaking system, or extending stereotactic methods to multiple tumors takes a lot of time to test-fix-test to ensure repeatability and risk reduction. 

I've also found in life there are no guarantees, period.  I believe the quality of my life and its enjoyment are in my hands.  Living life well entails nothing more than a conscious decision on my part to do so. It took me a while to realize this but cancer provided me the opportunity.  

My book is only available through Amazon but the Kindle reader application can be installed on almost every type of computer, smartphone and tablet.  People have written telling me they've gone to their public library computer lab and read it for free.

Stay the course.

Tom

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Tom,
Thank you for your continued support. I belong to 2 public libraries and will check to see if either has your book available. Pretty sure one of them will figure out a way to get it for me if they don't. I feel like I'm overusing the forum right now, but so glad it's here. Not just for questions but to share what I'm learning. None of it may be new to others, but I figure you never know, someone might benefit from it. I agree that the quality of my life is in my hands and I intend to have another good day today. God bless you.
Judy M

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