KarHart
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Posts posted by KarHart
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Ken's liver resection went very well. They couldn't do the laproscopic procedure. The surgeon found more tumors, all in the same area and had to do the big cut (ouch!) in order to get all the cancer. He was very confident that the liver is now cancer free. He is still in the hospital, still cannot have anything to eat or drink. Poor guy, food is all he thinks about. I had to come in to the office to do payroll and will be heading back to Tampa soon. Now, just on to the lung. From what I understand it sounds like having a lobe removed is going to be even worse than this surgery. I haven't told Ken that though. He said he would do it now if they would, the sooner the better. I would like to hear from those of you who have had part of your lung removed, I really don't know much about that procedure. Will update when I get back again. Thanks again to everyone for the support and prayers.
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Congratulations. I know how excited you must be. I am looking forward to my first grandchild in Sept. Isn't wonderful to have something positive to look forward to.
Karen H
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So sorry for your news, but it is great that you and your husband are so strong for each other. I hope you can get some rest and will be sending prayers your way.
Karen H
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Lori, I am so sorry your mom is feeling so bad. I know seizures are really scary to see, but I don't think they are particularly dangerous. My father had brain cancer and when he had a grand mal seizure it just about scared me to death the first time. He was not even aware he had one when it was over. It was much harder on us then him. Hopefully, they will be able to get your mom stabalized and she can get back on track. Please just try to hang on there and we will all be praying for you.
Karen H
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Well, we are leaving tomorrow morning for Tampa. We are taking our RV and dog to a RV park close to the hospital. He checks in Thurs. noon for the surgery. Our pregnant daughter is coming from WY and will stay until next Tuesday. Poor guy goes on a liquid diet starting today, and has to drink a gallon of some yucky stuff tomorrow afternoon. If everything goes well he should be in the hospital 7-10 days. Hopefully, nothing new is going to show up and as soon as he recovers we are going after the lung. We know this is a long shot for a cure. We really appreciate that the doctors at Moffitt are willing to go this route. Why not try is the way I look at it. We really need everyones prayers and good thoughts. I will come home next week for a day in the office and will update then. Thanks to everyone for the support.
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I just stopped by our house and he was gone. I couldn't figure it out till I saw one of our bikes missing! He actually rode the bike around the neighborhood. I was just blown away! I guess everything is fine, what a change from yesterday. He even smiled. He will see doctors tomorrow so he should get a good checkup then. Thanks everyone.
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Prayers for everthing to go well for your cousin. A new baby should bring some light into your day. Our daughter is pregnant with our first grandchild and it is so good to have a happy event on the horizon (Sept).
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My husband told me last night that he was having pain in his calfs, more in one than the other. Since he has not been active at all I don't think this is muscle strain. I have read about blood clots starting in the calfs, are there other symptoms to look for? Yesterday he threw up in the morning and at night. He went through 4 cycles of chemo and did not get sick once. Hopefully, it is just a bug, but I hope it doesn't keep him from having surgery next week. Tomorrow he goes to Moffitt for a pre-op check. He was taking an aspirin a day, but stopped when we found out he was going to have surgery. Does taking aspirin prevent blood clots?
Any suggestions or help would be really appreciated. Thanks.
Karen H
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The same thing with my husband. No symptoms at all with the liver tumor which has been steadily growing. I read somewhere that 80% of your liver can be compromised before you show any symptoms. My husbands cancer was found "accidently" as many are, he had no symptoms then and he has none now, so you really can't make any judgements based on lack of syptoms at all. Hope you find out everything is o.k.
Karen H
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Happy Belated birthday, may you have many more.
Karen H
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My husband and I went to Moffitt Hosp. Friday to talk to a surgeon. His latest scans and PET showed the lung tumor had hardly any uptake but the liver tumor had again increased with a possible 2nd tumor adjacent. We have always wanted aggressive treatment and now we are finally getting it.
The surgeon agreed to do a liver resection. Fortunately, the tumor is in an easily accessible area. He is going to try for a hand assisted laproscopic procedure so the incision will not be too big. He will also look around for additional tumors that may not have shown up on scans and will try to RFA them. He admitted this is not the usual procedure for lung cancer with mets to liver. I think part of the reason they are doing it is because they have never determined for sure that he does not have 2 primary cancers. Once he heals, if there is nothing new they will do surgery on the lung.
I really liked the Dr. So far everyone we have seen at Moffitt has been very good. Like the dr. said this was not a course of action that would be taken at a community hospital. I would urge everyone that can to go to a cancer hospital, there is no doubt in my mind that you are going to get more specialised care and treatment at these hospitals. Fighting cancer every way they can is what they are all about.
The surgery is scheduled for the 31st. I am a little nervous, it is pretty major. He will probably be in for at least a week. I am also very excited because we may have a possiblity for a cure, something that we have been told from the get go wasn't going to happen.
I would love to hear from anyone who has had a liver resection and as always am grateful for all the support.
Karen H
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Good news. Hope they come up with a good plan for your mom. Let us know.
Karen H
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It may be possible my husband has a met to his ileum. He will have an MRI in the next week or so. The nurse said they would just "radiate it off". Can anyone tell me about this? I have seen where people have had multiple daily radiation treatments for weeks sometime. Has anyone had experience with radiating a bone mets? Thanks, it is a big help to get feedback from those who have already been there.
Karen H
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We are not going to do the CK right now, surgery instead. Your mother and my husband were diagnosed about the same time with stage IV with met to liver. I think the CK may be a very good option for your mother. Check out http://www.cyberknifesupport.org/forum/default.aspx?f=6. You will get good info there. You can post ? and get answers the next day. I have several postings there. Good luck.
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Well, things have changed. I talked to Moffitt yesterday and the Tumor Board recommended surgery on my husbands liver. I was very surprised. I also got a copy of his CT report from Monday. Things are not as good as we thought. There may be a second tumor adjacent to the first in the liver. There is also a possible met to his hip. He will have a MRI probably next week to check that out. Now we are waiting for the surgery consult appt. I feel like we are at the start of that uphill battle. Still I feel like we can get a handle on this. Control is all I am looking for right now. I feel that it is likely we will use the CK option in the future, possibly even on the primary tumor.
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We saw the onc dr. at Moffit on Monday. The PET scan showed that his lung tumor was practically gone (really good thing!). However, the liver tumor had again increased. The dr. took him off the clinical trial. He is going to speak to a surgeon about the liver. Meanwhile, he encouraged us to go ahead to CK consult in Miami.
After reviewing the most recent scan the dr. at CK said the lung tumor was too small to consider CK but the liver tumor was a very good candidate. My husband wants to wait to see what Moffit says, he still is leaning to surgery. A surgeon also talked to us at CK and said generally surgery is not considered for mets to the liver from the lung. He recommended the CK.
If we do the CK we would return to have the fiducials (little markers) implanted around the tumor (probably 2-3). We would then go home and return a few days later for a CT scan. The next day would be a planning day for the CK team. He would then have 3 treatments, one a day for the next 3 days.
Since my husband is on Medicare the cost for 3 treatments would be $10,500. We have to pay this up front. They will fill out all the claim forms and help us with all the filing requirements to be reimbursed by Medicare. The fiducials are not covered ($100/ea). Dr.'s, scans, etc. would be filed to Medicare.
I would be very interested to hear from anyone that has had any type of treatment for liver mets. Right now we are just kind of hanging...waiting to hear from Moffit.
Thanks to everyone.
Karen H
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Add my prayers, too. I hope Lucy has a quick and easy recovery. Best of luck.
Karen H
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Thanks to everyone for the info. The web site was very informative. I hope he does not need one, it sure doesn't sound like fun. He's had 2 needle liver biopsies that did not bother him too much, so I guess he could handle it. I am the one that gets bothered more by needles, I can't watch, he can't not watch.
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My husband is going to Miami next week for an initial consult for CK. From what I have read fatigue (short lived) seems to be the main side effect. Are you already scheduled? Have you checked the cyberknife support page - www.cyberknifesupport.org? There are postings there that may help you. Please keep us informed how it goes. Thanks.
Karen
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I have seen this mentioned. Do you generally continue on a chemo until it stops working or is there a set number of cycles and that is it? My husband has gone to Tampa today for a PET scan and on Monday we go over for a CT scan and talk to the Dr. They have him scheduled for chemo that day. However, he did not have great results with the first 2 cycles. If the liver does not respond I think they will take him off the chemo he is getting now. I would assume they would recommend some other kind. Since he is hopefully going to have cyberknife on his two tumors it seems to me he should go off chemo awhile just so he could feel better. On the other hand I don't want any new tumors to come up. I guess I am just wondering if it is best to stay on a chemo regimen as long as possible, or if it is ok to go off for awhile? Thanks.
Karen
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My husband may have CyberKnife radiation in a few weeks. He has never had a biopsy on his lung since the doctors felt his COPD was so bad the lung would collapse. When they place the fiducials around the tumor there is a chance this may happen. I know that a chest tube then needs to be placed. Has anyone had this happen? How bad is it? How long do you have to have the tube and are you in the hospital the whole time? Thanks for any info.
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I sure wish everything went as fast as this. I sent Ken's scans and reports to the CyberKnife Center in Miami on Monday and on Tues. a Dr. called me. We are going there next Tues. The Dr. thought he was a good candidate, that they can ablate all his tumors. He wants him to see a oncologist surgeon there to rule out surgery on the lung tumors.
Tomorrow he is getting his last chemo at Moffitt for this cycle. On Feb. 28th they will do scans. If we decide to do the CK we will have to withdraw from the study he is in. However, the liver tumor did not respond after the first 2 cycles and I think if it did not respond this time they were going to recommend something else anyway. They still have some questions as to whether the tumor in his liver is a primary or a mets.
It is so hard to wait for scans and not know in the meantime if the chemo is working. I know everyone here knows all about that. I am wondering if new tumors can just appear while you are having chemo? Does that happen? I am worried that the scans might show something new, but then I think surely not while he is actively on chemo, especially this early. The Dr. at CK said he should continue chemo so new tumors did not develop.
I will let everyone know how it goes at the CK center. I have a lot of questions for them, hopefully we will get some really good answers. Thanks everyone, the info and support from this board is priceless.
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Jim is gone
in GRIEF
Margaret, I just read your post. I am so sorry for your loss. I have been so inspired by your courage. You and Jim fought a brave battle. I hope you can find some peace in knowing that he is safe now. Thank you for your kindness and support, please let me know if there is anything I can do.
Karen H.
On to lung surgery!
in NSCLC GROUP
Posted
We are home now after Ken's liver resection. The surgeon was very pleased with the outcome even though he had to do the "big cut". He found at least 1 more tumor close to the original tumor that did not show up on scans. He checked with the camera all through the abdomen and said "there is no cancer in his belly" now. According to him he should be recovered enough for the lung surgery in about 4 weeks.
I know this is unusual to have 2 surgeries for NSCLC, but I think the reasoning is that he may have 2 primary cancers (lung & liver). The chemo was very effective against the lung tumor, but did not seem to do anything for the liver tumor (tumors). The tumor board made the decision to go after both with surgery, which frankly really surprised me. I was actively looking at cyberknife since I did not think they would go for surgery. My husband has always wanted surgery from the get-go, and I think the fact that we made it clear we wanted to be very aggresive may have had some bearing. Moffitt is a cancer research hospital so maybe they thought Ken was a good candidate for more unusual treatment. We are very grateful for the chance to possibly cut out all the cancer (painful as it is). I know this is a long shot, but it is a possibility.
We go on the 19th to see the lung surgeon (back to where we started at Moffitt). My guess is he will order a scan (as he did the first time we saw him). Hopefully, nothing new will show up this time and he will schedule the surgery (right upper lobe). I don't know if we are at stage 1a now or not, guess we will find out soon. It sure sounds a lot better than stage IV!