Cancer Centers of America
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Jayne, you are terrific! I can hear the strength in your post and I feel much better. I also understand now, too. I am glad that Ken is not having to hard a time with side effects that sure is a big bonus! Tinnitus is really annoying, I have it quite often and mine is a hissing sound. I have to relay this TRUE story, honestly it is true. I had an elderly Aunt who had tinnitus continually and she would hear the same song in her head over and over, always the same song. Well, she was a very religious Jew and the song was a Christmas Carol!!! Had to give you a true but bizarre laugh here. Keep doing what you are you are doing great and you could advocate for me anytime.
Lainy; We are not going to the second onc because he was in Cleveland at Cleveland Clinic and we live in the Columbus area which is 2 hours away. His diagnosis and treatment plan was exactly the same as the onc we are seeing at OSU. I think the only difference was the attitude of each doctor. Although our onc here is a young woman and not what I would call “warm and fuzzy’ she does seem to know what she’s doing. I am not willing to let my husband just give up and start dying no matter what his doctor has said about the life expectancy of her patients. One of the things I have learned through this (and some other medical circumstances) is that you have to be your own advocate. I want to be an involved participant in my husband’s care and if something doesn’t make sense to me, then I question it until I get the answer I want.
Ken is getting Gemzar and Carboplatin every two weeks. I know protocol is Gem and Cisplatin but he was already experiencing tinnitus and has some hearing loss so his doctor didn’t want to give him the cisplatin because one of the side effects is hearing loss and tinnitus. So she went to carboplatin which is a step down from cisplatin. It’s working pretty well and he’s not having hardly any side effects (the nasty ones anyway) so for now we are sticking with this combo. If it stops working and the tumors start to grow, we will reassess and try something else.
Thanks for the encouragement to be strong. My friends tell me I will be okay because I am so strong. But they aren’t with me when I’m melting down and wondering how I am going to do this. I will make it through all this because I have to, for my children’s sake if nothing else.
Hi Jayne, sounds to me like you are both doing well. What kind of treatment is Ken having now? I think your attitudes are positive and that is good because positive is more healing and negative is time wasted. You know we love the shrinkage word! I am curious if you switched to the 2nd ONC? Keep doing what you are doing and thank you for feeling this site is the place to be. Please do keep us updated and Be Strong!
Thanks for the information from everyone. And believe me I do NOT talk to my husband about becoming a widow. He doesn’t follow this discussion site and I choose very carefully what I read to him. I know he feels guilty about contracting this awful disease. He’s had cancer before, 15 years ago, and so we are not new to the “diagnosis”. But it was very different and surgery to remove the tumor got it all so he did not have to have chemo or radiation at all. It had not metastasized to any other organ or any lymphs so although the process was extremely stressful, the results were very positive. And the doctors this time said there was absolutely no connection between what he had 15 years ago and CC.
I guess you have to at least feel like you’ve exhausted every avenue that’s out there for a possible breakthrough. I do place a HUGE amount of credibility on this site and all of you. So many have “been there, done that” and I know we can all learn a lot from those that have gone before us. But I also know there are breakthroughs all the time and I would sure hate to find out I missed something out there. Isn’t that the purpose of this site? To share experiences and pass on information? That’s what I love about it.
Ken’s scan last Monday was pretty good. No new growth and some shrinkage especially on one of the tumors. The bad news is we found out that he has 4 tumors in the liver which we did not know. We thought he only had one. The lymphs have shown no change. We are taking everything as positive news. He’s still doing pretty well, working full time, mowing the yard. But he gets tired quickly and takes naps which is to be expected.
We are continuing to stay as positive as possible and, as a friend told me, “keep[ing] on living”.
Jayne,
I won’t comment on CTCA except to say they don’t have a good rep with AETNA. AETNA doesn’t recognize them. BUT, I also say get as many opinions as you feel you need until you find a place you like. I also agree no one really knows how we will fight our own battles against this monster. Some of us have been going for over 2 years with no resection, transplant, or much initial hope. I myself was basically told no more than 2 years, and that was April 2011. And I still don’t feel sick. So you can’t believe them! And no more “widow” talk around Ken! PLEASE??? Believe me, he’s carrying his own guilt for getting this.
Make plans for graduation, and whatever else you have coming up. Try not to dwell on the “what ifs”. There will be enough of them, but try to help him act “normal”, whatever that is.Hi Jayne,
I have no experience to offer on CTCA but would take the advice of the members here on CTCA as this topic comes up quite often. I also wanted to wish you and Ken good luck for his scan results when you get them on Friday. My fingers are crossed for some good results and please let us know how that goes.
My best wishes to you both,
Gavin
So, I’m new at CC, but my experience with CTCA was not great. Thankfully I have a Mayo clinic in my hometown, but wanted a second opinion just in case, but CTCA took my insurance information and didn’t call me back to four or five days to which they said my insurance didn’t pay enough so they wouldn’t even look at my case. They really ticked me off, I wouldn’t go there just because of that. Besides what everyone else has said that they don’t treat a lot of CC….just my two cents.
Jayne, first of all congratulations on your Daughter, I know I am early but perhaps the first! I have a Granddaughter graduating next May also from NAU in Flagstaff Az. A worthy goal for Ken to focus on his daughter. On the Natural or Holistic approach it has never been proven. The healthy eating cannot hurt but there is no evidence that it cures. My daughter’s BF got Lymphoma and web to a Natural Path Doc for 2 years. After spending 50K on IV’s of Vitamin C. It returned with a vengeance a year later. We just had a long thread going on this subject just the other day. Look on our home page under Nutrition at the bottom. If Ken’s ONC said her patients live 6 months or a year then she is a pretty bad ONC! She must be doing something wrong. Sorry, that remark really got to me. She should be ashamed to even say that. While we were not born with expiration dates we are also aware that no one knows when it’s time to go! Sounds to me like she really doesn’t want to treat CC. I like the 2nd ONC much better. Why we even have a member in his 15th year. We practice hope and miracles here! Jayne, Teddy was Catholic and his faith really got him far. Take care and be strong!
Thanks for the practical advice. I was at home surfing through channels today and saw an infomercial for Cancer Treatment Centers of America. I keep wondering about them as they say they have a holistic approach to treating cancer patients which includes diet, acupuncture, etc. I’m not sure my husband would be open to changing his diet dramatically if there were no proof that it did much good. Of course, if he knew it would cure him, he would eat dirt!
Nevertheless, I thought it would be a good thing to see what others on this site have experienced. We live in the Columbus, Ohio area and the closest centers are either Chicago or Philadelphia, neither of which are close and I’m with Mary. I think being close to family and friends is so important (maybe more for me than Ken, actually.) I will check the posts and see what others have experienced with CTCA. I guess we are still in denial a little bit since Ken is still not having any symptoms of the cancer and are grabbing at anything we can to find a cure (I know, not possible).
We have a daughter (our youngest) who will graduate from college next May and I want to do everything possible so Ken can attend her commencement. It’s in Indiana which makes it more difficult but we will make it work if possible. Ken will have been diagnosed for a year in November. Although the original diagnosis was Lymphoma it then was changed to CC after so many biopsies and tests in December with the diagnosis of CC in January. I count the date of his diagnosis actually November. It’s stage IV so I know he had had it for quite awhile before November. In fact, a year before that, he was complaining of his ribs hurting and I think it was the lymph nodes at that point but his doctor just chalked it up to some weird “inflammation” in his rib cage. An unrelenting cough is what sent him to the doctor last November which resulted in x-rays and an MRI. That’s when they saw the lymph nodes. His doctor said her patients live between 6 months and a year but the second opinion doctor said some patients live months and others live years (with an “s”). That was encouraging. I figure the chemo will kill him first as it destroys his liver and other organs.
All I know for sure is this cancer SUCKS! There’s hardly a day that I don’t cry about it and am scared to death about my future without him. We will be married for 37 years in October and I never, in my wildest dreams, thought I would be a widow so early. But I do have a deep faith and am confident that God is going through this with us and His ways are always a mystery and at the very heart of it all, He wants only good for us both.
Thanks for the input.
Jayne
HELLO JAYNE, the problem with CTCA is not that they are not good but when it comes to CC you want to be at the biggest and best there is for treating CC, someplace that has treated many patients. CTCA has not. If you go to the Search button at the top and type in CTCA posts will come up and you can see diff. opinions on there. Glad to even hear minimal improvement. I know you have had other opinions but maybe it’s time to see what else can be done or another chemo. Much good luck to you and be strong. And do keep us in the loop.
Hi Jayne,
When I was first diagnosed in August 2011 it was with adenocarcinoma unknown primary. I was re-diagnosed with CC this past February. They said the tumor was originally so small in my liver that it didn’t show up on CT, PET or MRI until it got larger this past February. I started treatment in October 2011 with Memorial Sloan Kettering in NYC and have stayed with them since then. However, when I was first diagnosed, in August 2011, I did receive two other opinions in addition to Sloan. One was Cancer Treatment Centers of America in Philadelphia. I know a lot of people are skeptical about CTCA. I was too but decided to try them out. They were very kind and accommodating for me. They usually request you stay for three days for evaluation. I had an appt with Sloan on the third day and did not want to cancel it so CTCA accommodated me by scheduling all the testing and appts in two days. It was very hectic for me but worth it so I didn’t lose my Sloan appt. the hotel they had me stay at worked with them and we only paid $75 to stay there. Also, when I spoke with the financial person at CTCA, I was assured they took my insurance and there would be minimal expenses for me other than the normal deductibles for my insurance. I was also told if the expenses were too much for me they would work with me. My total out of pocket was under $400 and I was able to pay that on my own but I believe they were sincere in helping me with it if necessary.
On to the real important info. They performed extensive testing on me. On the end of the second day, I met with appropriate doctors regarding each testing and results given to me. They gave me the same diagnosis as the first doctor I went to which was a local cancer medical center in my area. And then when I had my appt with Sloan I also received the same diagnosis. So CTCA was accurate with my diagnosis. The reason I didn’t choose them for treatment was twofold. I was nervous because they weren’t so well known and I had heard they were in it for profit. Honestly, aren’t all hospital profiting from the illness of people? My second reason was because it was far from my home and I worried about travel to/from home to CTCA for treatment. If I decided to stay at the hotel during treatment then I wouldn’t be able to see family and friends. I feel it is so important to be near to those close to you when going through a difficult disease and I knew I would be depressed and feeling lonely far away from home. So I went with Sloan and as I said I am still there being treated.
Hope this gives you some insight to CTCA.
Wishing you and Ken the best in fighting this terrible disease.
Peace & Love,
MaryI am wondering if anyone out there has either gone to or gotten a second opinion from any of the Cancer Centers of America for CC. My husband, Ken and I went to Cleveland Clinic and basically got the exact same information that we have gotten at Ohio State University, The James Hospital. The doctor we saw was young but felt he was experienced in CC having had 30-40 patients in the 3 years he’s been practicing in Oncology. That wasn’t extremely encouraging, however. He also said he knew our oncologist at OSU and she was a good doctor. But I can’t help but wonder if the doctor at Cleveland Clinic and our doctor would have supported each other no matter what. I do not believe they would intentionally harm a patient, but they have obviously been trained similarly.
As an update, Ken is doing well. Still no symptoms of the cancer, but the chemo is taking its toll. He has lost a lot of his hair but not all of it. His blood counts continue to drop but have not gotten so low that chemo was not administered. His newest side effect is that he constantly grits his teeth. Like he is chewing something but is not. Of course, he is tired but is still working full time and even mowing the grass (his baby). He had scans on Monday (8/5) and we will see the doctor this Friday. The past two scans have shown minimal improvement but we were at least happy that his cancer was not growing or getting worse.
Any information would be greatly appreciated regarding Cancer Centers of America. Thanks so much!
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