We have been trying to get into MD Anderson, but have not yet gotten approval. The request for 3rd opinion was denied, we appealed by phone due to the urgency, and the appeal is being handled thru the insurance company's "fast track". We should hear by Monday or Tuesday.
BUT... Ben's oncologist talked directly to a specialist at MD Anderson that has several clinical trials going. There is nothing for Ben at this time, but both physicians are in agreement that Ben needs to start something NOW. Of course we heard this from Ben's Oncologist Friday evening, and nothing happens over the weekend. So they will start pushing for approval for a new chemo regimen which was recommended by the MD Anderson specialist - Adriamycin and Gemzar, both given weekly. Anyone know about Adriamycin??
Ben had a PET scan on Thursday, and will have a brain scan on Tuesday. Really worried about METs, as his last MRI showed "something" different in the lungs, as well as a spot on the pelvic bone.
Everytime we think we are taking a step forward, we go two steps back. I'm really getting scared and I'm sure Ben is too. We don't share our fears too verbally.
Tomorrow is our 30th anniversary, much of which will be spent on the phone with insurance companies and physicians, etc. OK.... enough "poor me/us". Just needed to let it out. Thanks for listening.
Cathy
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We are in limbo....again
- By cat22
- Posted October 4, 2009 at 5:40 pm · 23 replies
- In Living with invasive bladder cancer
- Shared with the public
Explore topics in this discussion:
Pneumonia Anxiety Cancer Pain Confusion Adriamycin Bladder cancer
23 replies
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- By lsh
- Posted October 4, 2009 at 6:44 pm
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We are here to listen Cathy. I'm so sorry you are going through all of this with the insurance companies, etc. I know it is hard when you are both scared. When Dan was going through the Bone Marrow Transplant(with fungal pneumonia that was controlled by a drug in a clinical trial), it was really hard for us to talk about being afraid of what the future would bring. We spent as much time together as possible---and we hugged each other as often as we could. Sorry I can't be of more help. But we are here to listen any time you need us.
Lynda
- By cat22
- Posted October 4, 2009 at 7:00 pm
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Thanks, Lynda. Yes we are hugging more often as well. I still hope we get to MDA soon, and especially will be looking forward to meeting you in person. You have been a great help in your posts, private messages, and phone calls and it is all very much appreciated.
Cathy
- By joybob
- Posted October 4, 2009 at 7:21 pm
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cathy, sorry to hear this, we are here to listen. Have you tried other hospitals with clinical trials? I would get on phone and call and ask. I was staying at rotary house next to md anderson and there was a lady there whose husband has some form of lukemia, he is in a clinical trial that they said is 72% effective. So if there is one for her husband, someplace that has to be one for you. Hopefully with all of us thinking about this we can come up with something. Prayers to you both. Joycee
- By Cheyenne
- Posted October 4, 2009 at 7:21 pm
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Cathy, you know you can come here anytime and express your concerns, and fears, etc. This is disappointing but things, though prayer, always work out for the best. We just cannot see around the corner yet. But there has been some movement, the oncologists got together and talked about it and came up with a plan. That's important. The concerns you and Ben have are very real. And very scary. Please keep us up to date. Give Ben a hug for me. Well, a hand shake then. OK, give him a bottle of tequila for me. Hey, whatever you have to do Monday, do it, but do something for your anniversary. Go to a movie, rent a movie, but do something. Just don;t let this anniversary slip by. It may be the best anniversary you ever had. And God willing the two of you will be talking about for many years, like Lynda and Dan. Just be sure to have the best anniversary you can. Forget cholesterol and diets and everything else. Get wine and cheese, make popcorn, whatever. Don;t let this one go uncelebrated.
- By cat22
- Posted October 4, 2009 at 7:30 pm
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Thanks, Cheyenne. Your thoughtful post brought tears to my eyes. My Mom gave us a bottle of Grey Goose, so we will have a few toasts tomorrow, and one will be to all of you wonderful friends here at BCAN. I'll give Ben that hug, but won't tell him it's from you!!!
Cathy
- By cat22
- Posted October 4, 2009 at 7:34 pm
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Joycee. We are not giving up. We were happy that Ben's Oncologist quickly arranged a phone call to MD Anderson, and he said they had a very good conversation. The recommendation right now is start the Adriamycin/Gemzar as soon as possible, and still meet with someone at MD Anderson. I will also do as suggested and look for other trials. One of the trials that might have been good would not allow someone with a compromised kidney, even though the Nephrostomy tube seems to be keeping the creatinine down. We'll keep looking. Hope you guys are doing better day by day.
Cathy
- By sunshine604
- Posted October 4, 2009 at 7:57 pm
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Cathy -
Waiting is so awful. Every minute seems like an hour, and you're afraid to start anything in case news comes in. Hope you're able to enjoy the Grey Goose; if not I'm sure Cheyenne has lots of tequila which he can send you priority post. Do take time for your anniversary and enjoy each other.
I'll be hoping and praying that this will move forward quickly and MD Anderson will be on the scope soon.
Eileen
- By cat22
- Posted October 4, 2009 at 8:10 pm
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Thank you Eileen. Yep, waiting sucks. So does constant uncertainty, which we are all going through one way or another....
Cathy
- By Cheyenne
- Posted October 4, 2009 at 8:23 pm
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Fantastic, Grey Goose! And thanks for the toast.
Sometimes I send flowers to Lizzie where she works once in a while for an accountant. I usually use another name, sometimes the dogs, sometimes just any name. She always knows they are from me, but everyone else wonders. Of course they always figure it out, but it's fun. Like You got daises from Jayce? Who's that? Does your husband know? And she'll say of course not. It's pretty funny.
- By cat22
- Posted October 4, 2009 at 8:28 pm
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That doesn't surprise me a bit, Cheyenne, and I'm sure the co-workers are onto you!
Cathy
- By Cheyenne
- Posted October 4, 2009 at 8:42 pm
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Kathy and Ben, you might want to ask your oncologist is Grey Goose can be added to the mix? Hymmm.. Gotta be worth a try!
- By cat22
- Posted October 4, 2009 at 8:52 pm
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Cheyenne. Good question, but I think I know the answer already......Might be interesting to hear his reaction!
Cathy
- By roadrunner
- Posted October 4, 2009 at 9:25 pm
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Cathy,
How is Ben feeling? other than the anxiety what is his day like?
I am so sorry your having all this confusion over
if he can be treated there or not and when,,,,,,so frustrating,,,,and you were suppose to leave on your trip soon,weren't you??? Happy Anniversary,,,,we just had our 43rd on the 1rst,,,,congrats,,heres to you and Ben.................toast.........ginger
- By Karego
- Posted October 4, 2009 at 9:34 pm
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Cathy, Good to know the MDA doctors are working with your doctor. If they have a plan that can be put into place locally, then by all means start that plan. Your insurance company should have no problem with that. And you will have the benefit of MDA as well as being able to stay at home. I think you should look at this as positive in that you can get started with treatment instead of having to delay longer.
And, have a great anniversary tomorrow. Make it your day even if you are busy making other plans. A look, a wink, a kiss, knowing your are together, that all you really need.
Karego
- By Cheyenne
- Posted October 4, 2009 at 9:36 pm
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Yeah they're on to me now Kathy. Have to start something different.
- By joybob
- Posted October 4, 2009 at 9:42 pm
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I know you are doing all you cando, it is so very difficult. I am going to go thru some stuff I got filed away. Maybe it will find something. You can e mail me if you want anytime joybobbev@aol.com. I think of you everyday. Prayers going your way tonight. We are doing ok, working on the bag issue. Joycee
- By cat22
- Posted October 4, 2009 at 9:59 pm
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Ginger,
Ben is actually feeling quite well, eating well, etc. He also keeps pretty busy. Gets up early in the a.m. and does stuff around the house and in the yard. He usually naps a little mid day, and He masks his anxiety well. I guess we both do, with the exception of my meltdowns. His foot pain is manageable, although the neuropathy is a bugger. Our plan was to be there around the 13th of October. Not sure now. Thanks for asking!
Cathy
- By cat22
- Posted October 4, 2009 at 10:02 pm
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Thank you Karego. We were very pleased that Ben's Oncologist had the consultation with MD Anderson, and they recommended a protocol that can be administered here locally. The insurance company approval should not take long, maybe a few days. I just always wish it could be "yesterday". Thank you for the Happy Anniversary wishes. Yes, lots of hugs are on the agenda.
Cathy
- By cat22
- Posted October 4, 2009 at 10:05 pm
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Joycee, Thank you SO much. Everyone here is so caring and giving. The support is incredible and again, I am very grateful to have you all.
Good luck with the bag issues. No more hamburgers (maybe 1/2 at a time) for Bob!
Cathy
- By georgiaE
- Posted October 5, 2009 at 8:05 am
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Cathy,
I am so sorry it is taking so long for M D Anderson to get back with you. Ed's oncologist gave him the option of going to M D Anderson for a clinical trial, Sloan Kettering for a clinical trial , pill form, which they were not taking any new patients at this time, or to get M-VAC here at home in his office setting. The trial at MD Anderson is similar to the M-VAC, just one of the drugs is diffferent but very strong, even stronger than the M-VAC and you would have to travel there every 2 weeks for treatment. They require that you even have all of your bloodwork done there, everything. We made the decision to remain home and are glad we did. M-VAC or any combo protocol is designed for the patient taking them, what they can tolorate. Ed received chemo treatments on a thursday and friday, and was to get the third treatment last thursday. He received the shot for his bone marrow after his second treatment and by thursday was so weak he almost passed out at the doctor's. His third treatment was canceled until this thursday and he received nourishment instead. He has slowly come back a little every day and we can't imagine having to travel with him feeling so weak and it would be very dangerous for him to fly with the flu out there. Whenever I need to go out now, I go early in the morning before the crowds to avoid catching something myself. Anything Ed catches could be serious. His white counts were very low as were his platelets. I researched and M-VAC is the top of the line for stage 3 or stage 4 bladder cancer. Ed was given 4 months to live without any treatment, and at this point and with such a short time he needed to try what has worked on lots of people and then we can do a trial after he is in remission, God willing.
I would definitely look for another opinion closer to home and ask your oncologist about the M-VAC.
Good luck and stay positive!
Love,
Candon
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