rook13
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Amy,
I am so very sorry for your loss. I am certain that she is in the most wonderful glorious beautiful place that none of us can imagine…peaceful and painfree…earth is a place that prepares us for greater things! I hope your feeling better and your fever is gone. Take care….
Karen
Kris..Lainy…Ashley…
Thanks for the comments and support! Appt. yesturday went well…lets say I’m not impressed with the Dr. as I felt he is the professional and should informing us of everything…instead of letting me pull it out of him! He offered direct radiation…and stated “this is not a curitive disease” too many times during our session…I kept reminding him that we are fully aware of this…GEEZ! Oh well I won’t go on and on about my issues with this particular Dr. In the end…he stated he would do whatever the oncologist would allow him to do…I had to pull the cyberknife procedure out of him…lol! I asked him if I should call the oncologist to let him know what was discussed during our visit…he says “yes”. This pissed me off so when I got home I called the oncologist and the interventional radiologist offices…lol…I got a call back immediately from both! Actually the interventional radiologist called me three times to talk about a plan…and inform me of his discussion with the Dr. we had seen yesturday. I’ll spare you all of the little detailed conversations. So the plan is as of yesturday at 6pm….Monday morning the two radiologist are going to meet early to plan asap to start Cyberknife since my husband’s first appointment for Theraspheres isn’t until August 11th. So…Cyberknife for extahepatic tumors etc. first…then immediately following or asap will be the Therasphere Therapy. I will be getting a call on Monday…per the interventional radiologist. The oncologist is going to schedule a CT of the spine (due to pain my husband is experiencing) and a complete CT of everything else…Chest and Abdomin area’s. I told him the Dr. we had seen yesturday made a comment during the exam that he felt a lymph node under my husband’s right arm pit. I don’t know what that means but he said it out loud and he said he wasn’t concerned…he should know better than to make a comment out loud like that if he had no concerns in front of a cancer patient and his wife…it caused a bit of a new panic as does each new area that is found. I do have to admit though I probably focused more on the first part of the comment and let the “I’ve no concerns” part go by the wayside. My husband reminded me that although we seem to have a plan now for treatments…the plan could change. He is right…it’s hard finding the right mindset to be in to keep some sort of sanity at all times….
Your all in our thoughts and prayers….Karen & Russ
PS…Please pray for my nephew, Cliff who was in a terrible work related accident yesturday….
Elaine and Gary,
You might check Cleveland Clinic, though they wouldn’t accept results etc. from our previous hospital…had to have their own. The interventional radiologist that my husband is seeing is Dr. Levintin. He is wonderful and such a blessing…and is ON THE BALL! The RN that works with him is just as wonderful. Her name is Teri Miller. I would call her and ask your questions. There is another RN working with her and she is also wonderful! The RN’s number is 1-216-444-8708. The voice mail will tell you for general questions call another number…don’t…leave a message on the first number. I would think she would be able to ask Dr. Levintin the question and get back to you. Cleveland does do Theraspheres and is doing their first Sir-Spheres this week. Good Luck!
Karen
Stan,
Echoing all of the above sentiments. Please know that you and your family are in my thoughts and prayers as you tread through this difficult time in your life.
Blessings for you and your family…Karen
OK…so today my husband and I marched our fanny’s into his appt. with the surgeions to have his staples removed with a list of questions. All went well…questions answered to clarify/confirm understanding of the resection that was not to be. The tumor encasing the three “things” outside of the liver were the bile duct, the hepatic artery, and the portal vein. Could not pursue the resection because they could not get at the bile duct to complete the work needed outside of the liver for the resection to be successful. Intrahepatic and extrahepatic cancer. Surgery team relinquished us back to the on-cologist but said if we felt we needed to talk to them about anything in person or over the phone to just call.
Next the oncologist came in (love the guys attitude)…we had three pages of questions for him and he answered each and every one! Found out that there are actually two tumors in the right lobe, 1 = 5″x7″ and the other is 4″x4″. He thought that direct radiation would be the plan until I brought up the other treatments…to include SIR-SPHERES & theraspheres (which Cleveland Clinic does do). He also wants to pursue chemotherapy for 6 months after radiation. He mentioned Gemzar as the drug he would choose best for my husband. I then informed him of the study regarding using Gemzar and Cisplatin to which he smiled and stated he was aware of that was in agreement with this if my husband felt he wanted this more agressive treatment (2 vs 1 drug). He walks out and discusses what we discussed with the internventional radiologist and his team.
Interventional radiologist and team walks in stating there was a minor disagreement and discussed using therashperes to treat the tumors in the right lobe and schedule an appointment with another radiologist to treat the tumors outside of the liver in other ways. He also discussed SIR-Spheres as well and noted they would be completing their first procedure using SIR-Spheres next week and if that is what we wanted…he would listen. He did point out the differences and the increased risk of SIR-Spheres for my husbands case. Also informed about the Clinic’s needed Board Approval & then FDA approval but has not ran into too much difficulty in getting the procedure/drug approved by both. Found out today that my husband now has a lesion on the left lower rib! So the thought is that the oncology radiologist will treat the tumor encasing the bile cut/portal vein/hepatic artery along with the two lymph nodes, if possible, and the lesion on the rib.
Tomorrow we have an appointment with the radiology oncologist to discuss treatment plans for the extrahepactic tumors/lesions.
I’ve read some of the previous postings about theraspheres and some difficulty’s with the insurance company’s approving the procedure. One discussion noted Cigna’s position with a link but when I clicked on the link in the discussion I got the good old “page not found” signal. I’ll call our case worker at Cigna tomorrow and ask her.
FYI…after discussing our latest nutritional journey (1 week as vegans) with the oncologist…we’ve decided to again enjoy, although in moderation, the wonderful American diet! I did and do enjoy alot of the receipes we had tried and will continue many…but the diet was decreasing my husbands appitite (already lost 20 lbs) and depressing him which wasn’t good for his moral. So…we enjoyed a moderate mid afternoon dinner at Olive Garden! It’s funny…before the diet we could have eaten everything on our plates…today we only ate half of our meals before filling fully satisfied. After eating…we both began to feel a bit sick to our stomach’s. Probably shocked our systems a bit with the change. That only lasted 2 hours but it was well worth the taste of that yummy grilled salmon!
Keeping you all in my thoughts & prayers….
Karen
Peanut,
I am so sorry for your loss. Your mom will always be with you as Jamie & Lainy said…when your sad…look inside your heart and find those forever lasting wonderful moments in which you and she shared. I bet you could think of a gazillion of them. She lives on in you and your brothers. I will keep you, your brothers, and your father in my prayers. When I’m sad…it helps me to think of those who I’ve lost over the years as living it up in heaven…free of whatever pain/suffering/disability/illness they had experienced here on earth..living the ultimate life…serving our father in heaven.
Bless you….Karen
Lainy,
Search board shows nothing on Issels. The web site address is as follows:
http://www.issels.com/submitted_itc.aspx
They note achievements in complete long-term remission of a great variety of advanced cancers that had failed conventional therapies. I don’t recall seeing anything about specific cancers. I’ll have to go back and check out their testimonials if they have them. I was just wondering if anyone had experience with immunotherapy treatments here. I’m cautious as I’ve not found anyone that has heard of this place.
Karen
Hello Diane,
I’m glad you have found what I know to be the best place for support & help in dealing with cc. This site and everyone here has educated my husband and myself in dealing with all that comes with cc. It’s like a library full of information only all the information is geared toward cc and you don’t have to sift through to find it! The stories of others has been helpful to my husband as he hears the facts from others who are going through the same thing as he is.
Karen
Eleanor,
Welcome to what I’ve found to be the most wonderful, supportive, and informative group of loving individual’s EVER! I’m new at this as my husband was recently diagnosed and find GREAT comfort in this BLESSED foundation.
Karen
Thank you Marions for the explanation. I’ll visit the site for sure. Tiffaney,
is your referral to Mayo going? Keep us posted and your in our thoughts and prayers!Karen
Thanks everyone for the info! Thus far my husband has had no treatments of any kind other than tests. It’s been two weeks since blood work has been completed at my husband’s last biopsy. Of all the blood they have taken from him, we have been told no specifics. I guess we really need to sit down with a doctor and ask ask ask. Today we officailly begin our attack on this dreaded disease. It’s off to Cleveland Clinic for his right vein portal embolization.
Karen
Deb,
So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:
1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!
Karen
Thanks for sharing such a wonderful story! Tracey is a wonderful role model for the fight against this dreaded disease.
Karen
