GREAT NEWS - NEVER GIVE UP HOPE - Discussion - Lung Cancer Alliance Survivors Support Community

Haven't been on this site in a long time, but am always thinking of everyone that is here. My husband, who had inoperable lung cancer (diag 7-1-08, NSCLC), just had his PET/CAT scan (10 mths since Cyberknife treatment and 8 mths since last chemo) and he is completely NED, not even any more inflammation showing.

His cancer was located right in the area of the bronchial tubes, esophagus and heart and was just about touching his bronchial, so they could not operate. He went on radiation and chemo (Carbo/taxol) and his lungs collapsed twice. I did a lot of research and saw that this Cyberknife has been doing a lot of great things and questioned about this. They sent his scans off to CA to see if he was a candidate because of its location and they said they thought it could be done, but they would have to put a fiducial in his lungs so the machine could track the tumor. This is when his lungs collapsed. After his lungs collapsed they had to take other scans and this is when they saw that the radiation/chemo had helped the tumor shrink and they were contemplating surgery. I then stepped in and said no, we wanted the Cyberknife. The surgery, he would have lost the entire lung and the chance that maybe a cell or two would get loose and travel in the body. If they insisted I was going to have his records sent to MD Anderson and maybe a few other places for help. Didn't have to do that as the surgeon agreed that the Cyberknife was the way to go. After the Cyberknife he had two more doses of chemo, this time much stronger. He didn't want to do the chemo because our daughter was getting married in Jan. and he knew this time he would lose all his hair. The whole family. especially our daughter, got together and told him that was ridiculous, who cared. He did ultimately do it, and, yes, he did lose his hair but he was there to walk her down the aisle!!! It WORKED and we are soooooo blessed. Oh, yes, all his hair came back thicker and curly. He's never had a curl in his lilfe (LOL). He's built his strength back up, has gained weight and is very happy he went through the treatments that he did. He quit smoking cold turkey the day he was diagnosed after years of us all begging him to stop and he doesn't miss it at all.

We pray for everyone dealing with this horrible, horrible disease, but there is always hope and they have new treatments coming out every day so never, never give up.

Rose

By Barb267
Posted September 12, 2009 at 10:58 am
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Thank you for posting such uplifting news. It is always a great way to start the day.

Blessing for many, many, many more years of NED
Barb

By Marylou1
Posted September 12, 2009 at 11:14 am
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Hi Rose:

Thank you so much for posting your husband's story. All these wonderful stories give people hope that there is a tomorrow. You and Hubby deserve a ***************Happy Dance**************** So I am dancing this morning on your behalf. Now it's time for both of you to enjoy some happy time together. Congrats!!!!
Love to all,
Marylou

By brooklyn1
Posted September 12, 2009 at 11:43 am
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Dear Rose,
Thank you so much for sharing your wonderful story. I am really grateful, as our oncologist was considering gamma knife to one of my husband's lung tumors if his current treatment doesn't work. He wanted to use something called leukine to jump start the immune system to attack the cancer cells, as chemo is not an option.

While we are not certain about using the leukine, I am very impressed with your husband's results with gamma knife, and we'll keep this in mind if we have to make this decision. I truly appreciate your guidance on this. May you continue to have only happy and healthy days ahead - dance that happy dance daily!
Peg

By RoRo
Posted September 12, 2009 at 12:16 pm
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Peg: First let me tell you how sorry you both are going through this, as we all have. I ready your profile and you have fought an incredible battle of this horrible disease.

My husband did not have gamma knife, he had Cyberknife. Gamma knife is used for brain and neck tumors. Cyberknife can be used on the lung, kidney, pancreas, spine. Cyberknife tracks your breathing as the robot arm goes around you and gives the radiation with submilimeter accuracy, minimizing any damage to surrounding tissues. It's an incredible machine.

Go to www.cyberknife.com and then go to patient forum and sign up and you can post questions and there are three doctors that volunteer their time and answer questions. I used them a lot at the beginning.

My prayers will be with you and your husband.

Rose

By cards7up
Posted September 12, 2009 at 12:45 pm
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Way to go Rose. I'm glad to hear you did your research and advocated for your husband. I'm
so happy that he is NED. You've all been through alot and now it's time to live again! Enjoy life and your family. Take care, JC

By brooklyn1
Posted September 12, 2009 at 5:07 pm
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Dear Rose,
Thank you for taking the time to explain this to me - I checked out the link, and now at least I know what the difference between Cyberknife and gamma knife is. My husband did have gamma knife for his brain mets, and it was great. Will clarify things with the doctor but hopefully we won't need to do anything more than we are. But just in case, I am glad to know this works so well. All the best! Peg

By lbp08
Posted September 13, 2009 at 12:47 am
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Thank you so very much for your posting. I was sitting here tonight wondering if my mom is at the end. I took her to the ER Tuesday and found out that part of her lung is collapsed. The area that is involved is so close to the tumor they said they cannot stent to reinflate the lung. Since this journey bagan I have refused to accept defeat and have told all my family that as long as she is breathing there is hope. I just haven't felt it over the past 4 days, you helped me tonight.

By cuddles53
Posted September 13, 2009 at 12:53 am
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I was thinking this cyberknife may be good for those of us who have tumors close to vital organs, I had given some thought to this previously, and now will ask about it, if i am to have anything else done, this is going to bermy first choice, I hate the thought of the lungs collapsing, mine did already just from having a dose of chemo the first time. I think cyberknife just may be the way to go, why they do not reccomend it more is beyond me, why do we have to come up with our own treatment ideas? i just do not understand why they can't just tell us these options, it is too bad we have to find out all of this from each othwr and we are not doctors!
when they say we have to advocate for ourselves, they are not kidding. Now you guys please promise me that when someone new comes on the site, and is asking for treatment choices, and thier tumors are located in places that are very hard to get at surgically, or even chemo is not an option, please, please remember to add this, don't just go on to the next post and read, it is all of our responsibilities to tell of what we know. what was just shared here with us, I see people like card7up and people like andiB telling others of the newest posts , please do the same thig and help get the word out on all things being doen, Like I always tell of rational therapeutics.com and also the newer vaccines in clinical trials, it is my duty to inform, as it is all of us who have some answers, we have learned from being on the site, many do not read all of the posts like a few of us do, so please help out and tell what you know to the new comers. they need it, just like we did.
Thanks Sandy

By RoRo
Posted September 13, 2009 at 1:27 am
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Sandy: It's not that the doctors just don't recommend it, it's that there are a LOT of doctors out there that, although, they deal with cancer patients, they really are not up on all the new techniques or are skeptical about it and so therefore don't recommend treatment. That is exactly why we need to keep doing our own research and advising everyone what we find out. There is now a study ongoing comparing outcomes to people who have had surgery vs having the Cyberknife treatments and, of course, there are the peope that cannot have surgery and this is the only chance they have. I believe in the future you will have a choice as they they are having 90% results with it.

Rose

By kayva
Posted September 13, 2009 at 9:38 am
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Congratulations on your husband's recovery. I hope he continues to do well.

I was diagnosed with stage one lung cancer in December 2007. I met with our local doctors who proclaimed surgery and chemo was the only way to go. I had read about Cyberknife and found that we had a clinic at the University of North Carolina's Memorial hospital in Chapel Hill and I requested a referral. Meeting with Dr. Morris there and undergoing tests I was declared a candidate for the Cyberknife treatment. Four fiducials were placed in my right lung and when I returned the following week to check that all was ready for the radiation, we found three of the fiducials had disappeared and we had to go in for another bronoscopy. This time they didn't travel and I had three outpatient treatments the last week in March and the first week in April 2008. I had my one year follow up in April and was told my tumor was "dead". I go back next month (October) for my six month checkup. Always a source of anticipation.

For those whole can qualify for Cyberknife, your life and activities remain normal. No nausea, no hair falling out, no weight loss. For me it was a miracle.

By RoRo
Posted September 13, 2009 at 9:52 am
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Congratualations on being your own advocate and researching. This is exactly why I wrote the post I did to Sandy (above). If you had just listened to the doctors you probably would have lost part of your lung or, like in my husband's case his whole lung (due to the location of the tumor), and your life would have been definitely changed forever.

Continued good health to you.

Rose

By cuddles53
Posted September 13, 2009 at 1:26 pm
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I know all too well how the doctors do not know everything, i realize there isn't enough time in a day for them to be up on all of the latest things, but come on things like assay testing, where are they on that one, they know about it, but still don't give any information on it for patients to make their own decisions as to get it done or not, I think this is a crime, a real crime not just the word, My god if a mechanic knew that you needed a certain part for your car for an inspection and didn't tell you, gave you the inspection sticker without it, he would lose his ability to do anymore inspections. yet we let highly trained , educated beyond our wildest dreams doctors get away without telling the full truth to us. How is that, is there some sort of club we need to belong too, to get out of things being against the law when it pertains to the medical people. Blows my mind. This is why I have the strong urge to be on this site as much as I can, and to tell whoever needs the information, If I have to say it over and over again, I will. I have seen may people on here saying the same things now over and over, and i am thrilled to see this happening, it is our group here that is going to assure you that you will get the best treatments from all we have learned, again I beg all of you with experience , or even without any experience ,but who know about some of these things like the sensitivity testing, like the vaccines in trials right now, to please tell the newbies coning on here about it too. We can not be in all places either so we need to advocate for each other.
I have seen andiB and I have seen cards7up out there now also telling of the assay testing and helping other. Please don't just read on these sites, answer the questions to those if you know the answers, these poor new people don't have a clue until we tell them what we have learned. I remember in the beginning for myself, I am a nurse yet knew nothing and wanted to know nothing. Because I was afraid. i didn't have all of you back then, but I do now, so I am less fearful. These new people can be less fearful immediately upon geting to know all of us, and we can share what we have learned from others. Even this muchroom extract is something or LDN for some when the docs tell them nothing is left, there is always something left, we don'
t have to recomend it, we can't really do it unless we had it ourselves, but we can say we have heard of others on the site who have taken it, or we have read about it in this particular journal, Just so they are aware, and can make better decisions. They then can go and ask their own doctors about it, which makes it beneficial also for the simple fact is that doctor may not know about it either and he may learn a new trick too.
My doctors both of them acted as if they knew all about the Lucanix vaccine until i asked them a question about it, and I knew from the question they had no idea about it, now this is a new vaccine not really new, it has been around on a shelf for years like so many others, but there have been really good results in the trials about it. I think this one is one the doctors should be looking at under the microscope for when it does get fully approved and comes out.
God bless Sandy

By kayva
Posted September 13, 2009 at 3:23 pm
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Cyberknife is a very expensive proposition for a hospital. The Robot (and yes it is a robot) costs $four million dollars and then it has to be in it's own "bunker room". Next you have to have technicians who have been trained in this treatment and who direct the treatment. Oh shock -- cancer treatment can bring in an estimated $500,000 to the treating hospital and physicians. I may be calloused but if the treatment isn't available locally, you may never hear about it unless you do your due dilligence.

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GREAT NEWS - NEVER GIVE UP HOPE

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