KarHart
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Posts posted by KarHart
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The waiting is scary, hope she gets good results again and can stay on the Tarceva a long time. It's great when something works.
Karen H
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Sue,
I join everyone hoping this will be the treatment that works. I am probably going to talk to Ken's dr. about taking it since he has tried everything else too. Maybe this will be the one to help Mike, Brian and Ken. Hoping and praying for us all.
Karen H
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Beth, it was a hard post to read, but thank you. I think Ken and I are getting close to where you are. I guess all our husbands want to keep looking out for us. What wonderful guys! It is just so sad and scary and it really does hurt. Please take care of both of you and I will keep sending prayers.
Karen H
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Hope you are in and out soon with all the answers you need (only good ones of course!)
Karen H
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Ken goes back to Moffitt on Friday for scans and to see the dr. and possibly a 3rd Avastin infusion. Unfortunately, every time he has a scan it is bad news. He has been on the Tarceva/Avastin for 6 weeks. I suppose if the tumors in the liver are still growing they will stop the treatment. I really don't know where to go after that. I want to look into cyberknife on the liver tumors again, but I think Ken is reaching a state where he just doesn't feel like trying anything else. I can't believe that there just isn't something that could at least help for awhile. We have never even heard the word stable. So,I am dreading Friday.
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Your father would have been eligible for the Agent Orange fund. I am assuming he did not know about it. There are survivor benefits for the spouse, however, I do not know if this can be handled after the fact. Please contanct your local Disabled Veterans group. They should have an advocate that can advise you. My husband is currently in this fund, he could get his care through the VA but we are going through insurance. He was able to get $30,000 in life insurance and my understanding is there are pension benefits for the spouse if he dies from LC as a service connected death. Please contact me if I can be of any help. I am so sorry that your family did not know of these benefits he was due.
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Off to Wy for the planned trip to see 1st grandchild. I got to go last week when he was born, but due to some minor problems they kept him in the nursery and I didn't even get to hold him. Everything is fine now and they are home. Ken drove our RV and is arriving there today. He started the Tarceva and Avastin a week ago. So far he is feeling ok, but he is having more pain in his liver area, not a good sign. Back on 9/20, it's good to have something to be happy about.
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This is just a tragedy, I don't understand how this can happen to a young mother whose children need her. It's just wrong, it's wrong for everyone who is suffering from this terrible disease. My heart goes out to all of us, along with my tears and prayers.
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So hope that the treatment works for Lucie. She has been my inspiration, she is so brave and you are both wonderful with your support for everyone.
Karen H
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Hi Mary,
My husband was in a trial at Moffitt also. It was to target the chemo specifically to his tumor. He had 2 tumors, one in the lung, one in the liver. The lung tumor responded very well, however the liver tumor continued to grow. He had a total of 4 cycles (gemcitibine and docetaxel). His onc. is Dr. Chiappori. He has been very willing to work with us. Unfortunatley, he now has multiple tumors in his liver and a couple of small tumors in his lungs. His liver tumors do not seem to respond to any chemo. He just started Tarceva and Avastin. He is the first patient there to get this combo (at our request). Hopefully, this will be the "magic bullet". I hope your combination works for you. Please let me know if you have any ? about Moffitt that I can help with.
Karen H
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Unfortunately, much sooner than I hoped. Kens scans on Thurs. showed progression in the liver after 2 rounds of chemo. We don't even know how many tumors there are, the doctor said between 8 and 12 and that he could tell by looking at the scan they were worse.
He is also getting Avastin. Right now we are committed to pay for it. The good news was that we get a discounted price from $30,000 a treatment to $11,000 each. They put us on a payment plan, $600/month. Of course after the next one in 3 weeks it will be $1,200/month and so on. Once Medicare denies it we can appeal to Genentech for the replacement drug. Apparently, we have to have the denial first.
On the way to the hospital Ken said he hated getting scans since they were always bad news. I tried to be optimistic, I really thought the chemo would work at least for awhile. I know a lot of people are on Tarceva. Has anyone had liver mets that Tarceva has helped? It just amazes me that nothing has even slowed down the liver tumors, it is really scary. He will have a scan after 2 months on the Tarceva. If it does not at least stop the progression the only thing left is to try to find a clinical trial that he could go into. If anyone knows of any trials that might be appropriate please let me know.
Thank you.
Karen H
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My husband just started on Avastin. At this point we had to commit to paying for it. They are sending it to Medicare but they will probably deny it. However, the case manager helping us said she had just heard that Medicare is considering it for NSCLC. If they deny it we have it set up to apply to Genetech (the drug manufacturer) for their replacement plan. The program is SPOC. You will need your doctor to help with this.
Unfortunately, since your father had a heart attack, I think it is highly unlikely he will be able to receive this drug. There are certain factors that prohibit its use and this is one of them. His doctor may not be familiar with this drug since it is so new.
I hope they can find something that will work, good luck.
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Have to be there for that, so I am off to Gillette, Wy on Saturday. She is being induced on Monday. Flying back on Weds. night, Ken has scans and chemo on Thurs. First scans since he started this round of chemo so a little worried. I will keep everyone in my thoughts and prayers while I am gone.
Karen H
It's a boy, Ryan. I am a little jealous, all those beautiful baby girl pictures, oh well.
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Beth, hope you get your strength back soon. Good luck to you (and prayers).
Karen H
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Cindi, so great you hooked up with this doctor again. I know we all wish we had a dr. like that. You mentioned surgery coming up but I didn't quite get it. It's great that you have come up with a plan.
Karen H
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Vibes, prayers, whatever you need coming. Good luck!
Karen H
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Tina, I hope you get the answers you need at the appt. today. Glad the Avastin was approved, hopefully, it will help Charlie turn the corner. Good luck and I will keep you in my prayers.
Karen H
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Wonderful, so happy for you!
Karen H
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Thank you, thank you, thank you for posting good news! I think we all need to hear that now.
Karen H
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I am so sorry to hear that Lucy has to start the fight again, but obviously she is quite the fighter. Will keep her in my prayers.
Karen H
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Good news, Barb! Do you go to Moffitt? If so who is your onc. there? Thanks.
Karen H
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Fay, you are a real inspiration. I am sure you have a lot of fight left in you, sorry that you have to. Praying that the best decision is made. Good luck.
Karen H
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Love and prayers to you and Faith.
Karen H
Update on Mom, no more Tarceva for her...
in GENERAL
Posted
I am glad your mom feels so good. Hopefully, the targeted radiation will be a big help and she will not have any bad side effects. A different chemo may just do the trick.
Karen H