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Now What?

7 years 4 months ago #43900 by jimswife
Apparently my quick repsonse didn't post. But, I just wanted to let you know that I can understand your frustration. If it isn't bad enough that you are dealing with BC, pain etc now Ins is playing around with you and denying coverage on meds. I would check with his doctors to see if they cannot do something to help out with this for an appeal. And while he waits for refills check to see if they can help with something in a sample. I am so sorry you are dealing with all of this. I would also check to see if even though it's past signup time for M'care see if your dad can get traditional plus a supplement. i suspect due to the pre existing it will be VERY expensive but it will cover the expenses better. Plus, the Part D which is for the meds I would efinitely file an appeal via your doctors. Jim has traditional, part b/a, d for Rx, and supplement F. It is costly but not as much as BC can be. Wishing you the best and holding you in my prayers.

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7 years 4 months ago #43895 by harleygirl
Just when you think all the bad stuff has happened, I found out today that my Dad's insurance company sent him a letter saying that they are no longer covering oxycontin on their drug plan! Are you kidding me?! My Dad opted for a "Medicare Advantage" plan about 6 years ago and, even though Dad could not go to MD Anderson with this insurance and now can't go to UTSW since they no longer take his insurance, he managed to get care at other places (inferior places it seems)and the insurance paid for pretty much all his care, crappy as it may have been.

Now they are no longer going to cover the only drug that even touches his pain and on top of that, are making him pay for 20% of the cost of his upcoming radiation!! He could switch back to plain Medicare, but with his health issues, could not get a supplement plan (in spite of what Mr. Obama says about not being denied due to pre-existing conditions!) and would have to pay the 20% PLUS deductibles for hospital and doctor visits PLUS drugs. And the hospital deductible is for EACH VISIT if they are more than 60 days apart.

He is supposed to start radiation to shrink the mass tomorrow, but he has apparently developed a UTI, maybe because the mass has started to block the ureter and back things up into the kidney. He needs radiation to relieve the blockage which is causing the infection but can't get it until the infection is gone which is not likely to happen until the blockage is resolved! Figure that one out. I fear he will have to have a nephrostomy tube (which he absolutely hates!) to relieve the blockage and clear any infection. I feel like this is one step forward and two steps back without the one step forward.

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7 years 4 months ago #43873 by jimswife
We always want to try to "fix" things for those we love. It isn't always possible. Wishing you the best for the future. Meanwhile Love your dad as you always have.

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7 years 4 months ago #43865 by harleygirl
I talked Dad into sending the biopsy specimen to Johns-Hopkins for a second opinion. It came back today and they confirmed the original diagnosis: TCC most likely a metastasis from the original bladder cancer.

The team at UTSW reviewed the images and reports and said no surgery since it would be extensive and even might involve building an entirely new conduit, and all for no cure since the TCC has most likely spread to the lungs.

So, Dad soon starts 15 radiation treatments (5 per week for 3 weeks) to hopefully shrink the mass and relieve some of the terrible pain he is in.

I feel bad that nothing I tried gave us any different results or any hope at all. All I did was delay the only treatment options he had while I searched for miracles that were not there.

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7 years 5 months ago #43810 by jimswife
I feel for you and understand your wishes but also understand your dad's wishes. Don't give up hope. If possible get him to send off the specimens to MD Anderson or John Hopkins for a second opinion. It may not change things but will give you peace of mind that you know what you are dealing with. I've discovered in life as especially in BC the unknown is what preys on our minds mostly. So try to get answers to those unknowns and then go forward. I will keep you in my prayers during this difficult time for you. I agree that this isn't the time for tensions within your family the bc takes care of that enough. Try to understand your dad's feelings. Wishing you the very best.

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7 years 5 months ago - 7 years 5 months ago #43806 by CatherineH
Hello... So sorry you are back with discouraging news about a possible spread of his BC. I know it is heartbreaking for you to hear that from his doctor and I understand you want him to fight. He has already been a strong fighter for a long time. It is a hard battle to weather, and he has done it valiantly to this point. Maybe when the meds have helped with his pain levels he will be more open to further discussion. Constant pain can certainly make one want to give up. I sincerely hope he can feel better very soon.

If he agrees to more appointments, or sending samples to Hopkins or MD Anderson, then you should do it. If chemo is presented as an option, you really have to listen to his wishes even if it is not what you want to hear. Certainly never give up hope, but also don't let differences over the next steps create tension in your family.

My heart goes out to you because it is a very difficult time in all your lives. Please let us know how things are going with your Dad... and with you. Special hugs for your Mom as she deals with this along with him.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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