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Posted 4/13/2013 10:29 PM (GMT 0)

hep93 said...


I read the other day that Medicare will no longer pay for chemo drugs. How can they do that? That's peoples' lives that are at stake!

Hugs,
Connie

Connie,

Wow, if this were true, pretty scary! I can not locate anything that supports Medicare not paying for chemo. Can you link your source on Medicare no longer paying for chemo drugs?

Here is info I found. Not with Medicare not covering, but with cancer clinics and oncologists deciding to stop accepting Medicare patients due to the Sequester cut of 2%.  Medicare still pays for the chemo and the administration cost, but at a 4% rate.... not 6%. The clinics and doctors don't want to take a reduced percentage. Below is a snipit from a WP article, April 3rd. 

"Medications for seniors are usually covered under the optional Medicare Part D, which includes private insurance. But because cancer drugs must be administered by a physician, they are among a handful of pharmaceuticals paid for by Part B, which covers doctor visits and is subject to the sequester cut.

The federal government typically pays community oncologists for the average sales price of a chemotherapy drug, plus 6 percent to cover the cost of storing and administering the medication.

Since oncologists cannot change the drug prices, they argue that the entire 2 percent cut will have to come out of that 6 percent overhead. "

The 2014 budget deal now proposed would give 3% cut, which includes that 2% already in the above mentioned. In a hospital setting, Part B would pay, not Part D as in clinic situations. 

For example, say a chemo session for drug and admin is $100.00. The admin cost was $6.00 of that $100.00 pre Sequestration.  Now under Sequestration it is $4.00 of each $100.00.  If the 2014 budget proposal is passed, the admin cost would be $3.00 of each $100.00. 

Nowhere can I see where any cancer patients are  being denied chemo treatments by Medicare....rather, some doctors and clinic groups are resisting the reimbursement cut and not treating Medicare patients. This is my understanding. If correct, Medicare chemo patients need to locate a chemo clinic that accepts Medicare patients. 

Let me know where you got the info that Medicare is not covering chemo. That would be insane.

Hugs, themiz  

Post Edited (themiz) : 4/13/2013 5:24:47 PM (GMT-6)

Posted 4/14/2013 3:17 AM (GMT 0)
Themiz, that explanation makes more sense. What I read was on the Internet...in one of the scrolling news stories on MSN or AOL, don't remember which. Sounds like someone misinterpreted. Medicare Part B pays for my antirejection med, Prograf. I obtain it from a specialty pharmacy that bills Medicare. I have a co-pay of $5.35 per refill....and free delivery. My other drugs are obtained from a "regular" pharmacy with Part D.

Hugs,
Connie
Posted 4/16/2013 3:33 PM (GMT 0)
Okay,

As we move toward Mike's RE-birthday (5/1 it will be 2 years), we are still on a quest to find out why he is so darn tired.

And we may have a bit of a clue from recent blood work. We will need the docs to review all this but here is some new stuff:

AST/ALT 129/107 certainly not normal, but not as high as earlier months

Creatinine 1.23 (Reference range .7 - 1.25) This is the first time in the normal range since TP

Potassium 4.8 First time in normal range since TP

All CBC elements are LOW LOW LOW

Platelets can not be counted because of clumping (for many times in a row)

AFP Tumor marker 27.3 (Reference Range < 6.1) Down from 40 last month....

Alk Phos 112 (Reference .2 - 1.2 ) Almost the same as last month...

Viral Load 1,424,784 Which is the lowest it has been since 2 months post transplant

Done for the first time in a while:

IRON AND TIBC Iron, Iron Binding Capacity and % Saturation -- All in normal range

Ferritin 1258 (Reference Range 20 - 380) This is iron that is stored as protein for later use. It is elevated with inflammation, alcoholic cirrhosis, certain cancers, and hemochromatosis.

My worry: With the Medicaid debacle, we cannot get fully coordinated care, we have to see community based docs for all but the TP folks. At Mayo Connie is still working with her "team". I wish Mike was also. So we have MRIs and various labs done here and there and they get cobbled together once a quarter by the Hep docs.

We see Mike's local oncologist on Friday. I think she is the most WITH IT of our community docs and I hope that she can call TP and scream at them if there is something indeed wrong here. She is the one who called Miami and told them to SEE MIKE ASAP.
The GI was "waiting until it was time" to send Mike forward. Mike would have died if he hadn't gone to Miami in October 2010! Mike's MELD was 24 the FIRST day he was seen at the TP clinic! GASP. and the GI doc was "waiting" for ... the funeral?

It is only 19 months til Mike gets Medicare...counting the days. Unless they mess up that program by the time he gets there.

MY "RANT D'JOUR"

Carol

Post Edited By Moderator (hep93) : 4/26/2013 7:07:44 PM (GMT-6)

Posted 4/16/2013 8:27 PM (GMT 0)
ML,
My guess is that the Hep C is making Mike so tired. High amounts of iron could be part of the problem. When my levels were high, a few months ago, they drew a unit of my blood to get it back down.
Posted 4/17/2013 12:02 AM (GMT 0)
My liver enzymes and AFP are also elevated and I am always exhausted. I feel sure it's the hep C.

Hugs,
Connie
Posted 4/17/2013 12:06 AM (GMT 0)
Connie

Thx for post. I thought your were resting today! I guess you are feeling ok after day at
Mayo
Posted 4/17/2013 3:45 AM (GMT 0)
Very tired, but otherwise okay. Am going to try to get to sleep now.

Thanks for picking up the slack today!

Hugs,
Connie
Posted 4/20/2013 2:23 AM (GMT 0)
Mike has his oncology consult today.

Doc agreed MRI showed no liver tumors but there is some concern about the bile ducts.  She wrote the order for an MRCP later this month.

Mike's Ferritin is about 1250. Which shows inflammation or perhaps some type of cancer.

He has a battery of cancer marker blood tests next Monday...CA 9 19, CA 125, etc.

He has a bone marrow biopsy on next Friday.

I refuse to get upset (though Mike has one foot in the grave again) until the tests are back. I am certain they are just making sure nothing has popped up...not that there are clues of something seriously wrong and they are probing further.

But if I'm wrong....you folks will be the first to hear.

Hugs,

Carol

 

Posted 4/21/2013 2:19 AM (GMT 0)
Sorry.  Thank you for the update on Mike. I don't know about you, but I keep thinking I am going to get better, stronger, more sane at this. I wish I could do more than remind you to eat, breathe and sleep. I will send you a gentle hug. Hang in there. themiz
Posted 4/26/2013 6:13 PM (GMT 0)
Two year RE-Birthday on May 1st, coming up soon. A miracle for sure.

Though the two years have not been without set backs. But over all, he is up dressed and having a quiet life.  He reads like a mad man...I finally convinced him to try a library as he was spending so much at Barnes and Nobel!  Our community has a lending library, bring one in take one out...so your own books get shared....he had a lot to share so he can read forever I guess!

We are having some tense days as he is having a bunch of labs and procedures to find out what is going on with him.

I have posted that they reduced some of his blood pressure meds and decreased his prograf to 1 and .5 plus added 250 mg cellcept twice a day.  That seems to be going well. BP up a bit in the evening, but not much.  His tremor is really a problem...he hates to eat out now! But he is not sleeping the day away every single day.

Today he had a bone marrow biopsy from his hip at the Oncologist's office. It was quick and he says that the shot to numb the area was worse than the biopsy  needle, but that is wearing off now and he has gone to bed to rest. They gave him a little bit of atavan IV and that took the edge off for him.  We go in 10 days for the results.  They will be a long 10 days for him.

We have done a lot of reading on the website and there are some conditions  that some post transplant patients face that are not so nice...the drugs can leave you vulnerable to some cancers...and the literature always says...be careful in the sun, skin cancers and lymphomas can pop up, etc. But who reads that when they are looking at LIFE saving TP surgery.  Several of his cancer markers are up, his ferritin is high, and his Epstein Barr is elevated again. We found several articles on PTLD, Post Transplant lympho-proliferative disorders that sound like that may be what they are looking for...evidently the antisupression meds can cause the body to allow some cancers to gain headway in the lymph system.  Yup, 10 days is a long time.

I'm still trying to hold onto the notion that I'll worry when I know what to worry about.  He, on the other hand, is VERY upset.

I want to go to  the beach for his RE-birthday and he is sort of, "why bother..."  The guy has been through a lot.

Best to all on this lovely day.

Carol

Posted 4/26/2013 7:17 PM (GMT 0)
Hoping for the best! I bet it is tough, you can only live in the now. Hopefully he changes his mind about the beach, might be a nice get away.
Posted 4/26/2013 9:52 PM (GMT 0)
Carol, 10 days IS a long time to wait for biopsy results. You need to distract yourself from the worry. You know, I was concerned about my AFP elevation, but nobody has called me...so I've stopped worrying about it. I have an MRI on the 9th of next month, so that will tell if there's a new tumor, and I will get the results on the 10th.

My thoughts are with both you and Mike.

Hugs,
Connie
Posted 4/26/2013 11:32 PM (GMT 0)
ML,
None of these things are worth worrying about at this point. I never expect good news. That way I'm never disappointed. Not depressed, just had nearly 10 years of bad phone calls, then got a new liver. Still haven't changed my mind about things. When the call is good, that's fine. If not, I still have lived almost 4 years that I wouldn't have, without a transplant. I look for the good news, while expecting the worst.
Posted 4/27/2013 12:15 AM (GMT 0)
You are the wise one Mr. **David**

Hugs,

Carol
Posted 4/27/2013 1:54 AM (GMT 0)
I've found that too much emotion doesn't help in this situation. All you do is feel bad about feeling bad. I save emotion for things that I can do something about.
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