KarHart
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Posts posted by KarHart
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I have had 2 people at work tell me about this today. I will definately be tuning in.
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I am currently looking into cyberknife radiology for my husband. This is a type of very precise, targeted radiation. They have just started doing lung tumors in the last year I think. From what I have read side effects are very minimal. I would suggest you look into this, just do a search under cyberknife. I am currently waiting to get copies of my husbands scans and will then send them to the Miami center for evaluation. From what I have researched this seems very promising. Good luck.
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Margaret,
I know what you mean about waking in the middle of the night. Thanks for taking the time to update us. You truly are an inspiration. I keep you in Jim in my prayers.
Karen
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Thanks for the guide, now I can stop running to the math guys here at work to convert to inches for me. I think I am just too old and set in my ways to see things in metric (although metric makes a lot more sense).
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Thanks everyone for all your encouragement. This onc. is just sort of a backup doc right now, so we have someone local to call on and so Ken can get his Neulasta shot here tomorrow. We are definately not giving up! Ken wants something physical done to his liver tumor so I am looking into cyberknife. Does anyone here have any experience with it? My sister-in-law also told me of a Dr. group in Seattle, Swedish Medical Center that treated her friends brother for pancreas cancer. He was given months to live and under their care he went for 7 years and died of a heart condition. I am definately checking them out. Seattles kind of far from Melbourne, FL. but I have friends that live there. I've gone to a local herbalist who did research for me and I am stuffing capsules down his throat I make up from the herbs, I am getting as many cancer fighting foods in him I can. I told him we have to attack this from every angle we can find. He is really being a good "patient" for me. I'm the one doing all the research. I think when we first found out about this he went online and did some research and it scared him so much he doesn't look into it anymore, just lets me do it. I only tell him positive stuff. I think we are both happier that way.
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We just came from seeing a local onc. since we have not seen one in our area (my husband has been getting treatment at a cancer center 3 hrs away). I feel like I want to break something and I am a type B personality! What is with this "there really isn't going to be a good outcome here so why even bother" attitude. I know this is not "curable", but I want my husband to fight it every inch of the way. I am afraid if the doctors say there is nothing more to do he will just give up. I keep telling him there are so many stage 4 people on these boards who are really hanging in there. The generic prognosis just doesn't always fit. Anyway, this is just so frustrating. I am so glad I have a place to rant. I really have to keep it together for Ken and our kids. Thanks.
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Thanks to everyone. Since it is possible that he has 2 primary cancers the Dr. did say at the beginning that at some point we might look at surgery on the liver. I am more interested in the cyber knife or radio ablation therapies since they seem to be easier. My husband just wants it cut out. If he had his way, both tumors would be cut out. We understand the philosphy that once it leaves the primary site it can show up anywhere, but still why not get rid of it where it is? From what I have read about the cyberknife it seems like a good idea to go after both the tumors. Even if it does pop up somewhere else at least they would be gone (hopefully).
Sometimes I worry we are not being aggressive enough. The clinical trial my husband is in is to target the genetics of the tumor by taking a biopsy of it and tailoring the chemo to more effectively target your particular tumor. I guess that's why I expected better results after the first 2 rounds of chemo. I hope we are not using up valuable time in this trial. I am definately going to look into other options.
I am more worried about the liver tumor since it has more than doubled in size since orinally found, while the one in the lung did not grow much at all before he started chemo. Again, it makes us wonder if it is a primary instead of a mets. Fortunately, they are both small. This is such a scary time, how do you know you are doing the right thing?
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I think this is so hard on our children, probably especially our sons. Our son (21) is trying to just ignore the situation. We even let him get away with it for a long time, but reluctantly, finally made him sit down and listen to what was going on once we really knew ourselves. His girlfriend is the one that asks for updates so I just fill her in and figure she is keeping him updated. For the first time he asked me the other day how his dad was doing and I wasn't really sure what he was asking. I said he was a little tired and then he said he meant how he was doing overall. I guess he is finally realizing it is something he has to admit is real. I hope someday he will be able to express himself so fully and beautifully as your son did. Thanks for sharing with us.
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My husband had his scans after the first two rounds of chemo. Slight shrinkage in the lung nodule, slight growth in the liver nodule. Overall, the Dr. considered it a wash and called it stable. There is still some concern that he has 2 primary cancers since the lung was never biopsied. After the next 2 cycles if there is still growth in the liver, I think we are going to look at other options there (surgery?) Has anyone had surgery or some other procedure on a mets to liver? From everything I have read here I know stable is good, but I was hoping for better results from these first 2 rounds. Is is realistic to think that the next 2 rounds will do better? Thanks for any help and just everyone being here.
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Thank you for posting this article. This is something my daughter mentioned to me awhile back, but could not remember the name, just something with knife in it and in Miami. I think this is something we may look into, we only live 3 hrs away. Thanks again.
Karen
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Hi, I've been lurking in the forum for quite awhile, but this is the first time I've tried to post so I hope it works.
I thought there might be some vets out there that do not know about the Agent Orange Fund. My husband is a Vietnam vet who was diagnosed with NSCLC in Oct. 04. He was already on 100% disability with the VA and could get his care there for free. However, we are using his Medicare ins. and going to Moffitt Cancer Center. He has applied to the Agent Orange fund which covers Vets that served in Vietnam for a number of conditions including lung cancer. I don't know too much about it but I think it will pay for treatment through the VA system. According to my husband there are also survivor benefits as this is considered a service connected condition. I would urge all Vietnam vets to contact their local VA about this. I think that they could also apply for disability benefits.
We have not yet heard back on my husband's claim, but I will post again when I have more information.
Karen
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Melanie,
My husband ran a fever after his second cycle of chemo. The doctors told me if it went over 100.5 he had to be seen. We are going to a cancer center that is 3 hrs away. We do not have a local onc. His temp went to 101.3 on his fourth day of temps going up and down. I took him to our local ER and they took it very seriously, said I absolutely did the right thing to bring him in. He was admitted and put on a broad spectrum of anti-biotics. He was released a day and half later. Blood counts low, temp gone. We are new to all this and this is the only bad reaction he has had so far (other than losing his hair, of course). I hope your doctors take this seriously, I was very comforted by the attention we got at our local hospital. Hope you feel better soon.
It's back
in NSCLC GROUP
Posted
Beth, I know it sounds scary, but you are such a fighter. All my best thoughts and prayers to you.
Karen H