KarHart

Glad you are back. Missed your posts, keep them coming. Karen H

Adding my prayers (extra ones). I know it is particularly hard to tell your children bad news. I really hope things turn around and you get to FL as planned. Also hope this pesky hurricane (Wilma) does not impact your plans. Karen H

Trish, I've been waiting for you to post. I am just thrilled at your good news. It just goes to show that miracles or at least really good things can happen. Can you write more about the CK at Miami. I think we are going to look into going there again. Ken was going to have a liver tumor done, but then had surgery instead. Unfortunately, soon after the surgery he had multiple liver tumors. There are two big ones and I am thinking CK would be helpful. Which dr. did you have there? I hope your good news just keeps coming. Please let us know, it really helps all of us. Karen H

I know how hard it is when you don't see any progress. Our daughter just had a baby and I know she was worried her dad wouldn't be there, but he was. Hopefully, your mom will be here too when your baby comes and that baby will bring so much joy into all your lifes at such a difficult time. Karen H

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

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

Hope you are in and out soon with all the answers you need (only good ones of course!) Karen H

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.

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.

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.

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

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

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

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.

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

Peggy, so good to hear from you. I think of you often. Karen H

Vibes, prayers, whatever you need coming. Good luck! Karen H

Thank you, thank you, thank you for posting good news! I think we all need to hear that now. Karen H

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

Margaret, Good to hear from you. Can't really offer any advise, I have always had a problem swallowing pills. It's all just me, I choke on little tiny hormone pills. Hope your problem is just temporary. Karen H

Cindi, Sorry it wasn't good news. You are such a fighter so if you need a day or two to regroup that's fine. Just come back soon, we all need and miss you and we need to hear that you are o.k. Praying for you. Karen H

Praying and hoping you have a wonderful trip and memorable anniversery. Karen H

Ann, Shame on them for treating you like that. That being said maybe now that they are walking in your shoes they may have more insight. Maybe you should try to reach out to them and offer them some of the experience you have with dealing with such a viscious disease as cancer. I know I certainly appreciated the help you gave me. If they rebuff you at least you tried and will know that you did what you could to help Dennis's family. I don't think you can ever go wrong with showing compassion. Please let me know if I can help. Karen H

For about a week now Ken is having trouble sleeping. Can't get to sleep, can't stay asleep. He has started taking his pain pills again to try and knock himself out and that is not working. I have given him ambien and that does not work. Could this be a possible side effect of Alitma or carboplaten? Anyone have this problem? Any suggestions? Wine knocks me out so maybe I'll have him try that tonight. Thanks.

We "taped" it onto a DVD. I will be happy to start a "chain" if anyone would like it. Let me know. Karen H