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Posted 5/27/2014 3:26 AM (GMT 0)
Hi guys,
I wanted to ask your opinions on something i am troubled with.
My MRI, showing my HCC is back with 3 new lesions and 5 "something's" in the background, was done may 1st. It is now the 26th and I still have not heard their final decision of what they want to do about it. There was mention abt another rfa, but they had to check with the ablation expert and he was out of town.
I am outside of Milan now, but not by much.
Last year at my TP evaluation they said i was too stressed to have a tp.
Now they r saying i am fine and that my psychologist " is doing a good job". I am having a problem with the time this is taking, considering the gravity of my situation. I was also told my cancer is aggressive and growing quickly. I only got 7-8 months out of my first ablation before the reoccurrence.
Does this seem to you to be taking an unusual amt of time for decisions?
Oh, and one more thing. I remember someone on the list commenting their loved one was not listed, or selected, because they were on Medicaid. Is this so or did i misinterpret what was said?
Thanks everyone,
Hugs and love,
Zoarie
Posted 5/27/2014 9:30 PM (GMT 0)
That statement was an opinion, although having good insurance often means better care in certain hospitals or from some doctors.
Posted 5/27/2014 9:59 PM (GMT 0)
Zoarie, when is you next clinic appointment. I'd try to push that up and they would likely talk this through at that appointment.

Do you have a nurse coodinator? I'd call her/him and see if you can move the appointment up...maybe tell t hem you are thinking of going on a trip June 10th and hoped to fit it in before...to leave for a few days without this hanging over your head.

You have to be careful not to sound too ANXIOUS about this.

Re Medicaid...please know that Mike has been on Medicaid since before his transplant. The handled 5 hospital izations before transplant and 6 after (so far) AND they have covered his Hep C treatment drugs 100%. So, I don't think you will be exlcuded from care because of it.

Please know that this population, with Liver disease is very heavily uninsured or underinsured...because the disease is long lasting and often disabling... Mike has not liked some of the clinic type environments, BUT they have never used his status to triage his care. If the TP hospital takes Medicare, it takes Medicare. They ahve some work around things that are a pain...like sometimes we have to have imaging done outside the hospital and bring the discs back in wiht us for the doc appointments, but mostly it is all good.

Best to you in getting the appropriate care for the new tumors.

Hugs,

Mama Lama
Posted 5/27/2014 10:15 PM (GMT 0)
Zoarie,

I would ask about alternative treatments like chemo embolization and radioembolization (Therespheres) for your tumors,

Also, this is a great site for HCC
https://www.beatlivertumors.org

Susie
Posted 5/27/2014 10:45 PM (GMT 0)
Zoarie, I am with Mama Lama on trying to speed up the process if they are rather slow. Not hysterical to make a follow up call on status of appointment:)

Sometimes paperwork does get set aside, misplaced, or an appointment scheduled, but the patient not called. Human error stuff. So follow up with a quick phone call just to double check.

There are many people with transplants that only had Medicare or Medicaid. Folks get sick and loose jobs, become poor and disabled. When that happens, one is often on either Medicare or Medicaid. I doubt you would have issues because of your insurance product, as long as your hospital accepts it. Let us know, and Big Hugs,
Posted 5/28/2014 12:13 AM (GMT 0)
Hello Zoarie! I think you are probably referring to a recent comment of mine about Medicaid. I had been talking about a second transplant for my fiance. He had Medicaid with his original liver transplant - there were no problems with getting authorizations and the bills were all paid. I said, and I totally believe, that him being on Medicaid played a part in him being denied the chance of a second transplant. There were other issues involved and I think that the additional issue of the hospital being reimbursed pennies on the dollar for another transplant, closed the door on the possibility. But there were no problems at all with Medicaid paying for his original transplant - and all other procedures, doctor appointments, and hospitalizations.

Post Edited (Splashdancer) : 5/28/2014 12:21:54 AM (GMT-6)

Posted 5/28/2014 3:28 AM (GMT 0)
Hi Zoarie.
I hope you are doing well. Honestly, I am a bit surprised that you have not heard back from anyone on your team regarding the MRI you had on May 1st...it's almost been one month! I understand that the teams typically meet with the tumor board to discuss each individual cases however, a month is way to long for you not to have any answers or a plan of action. I agree with all the other posts... Call your doctor or coordinator and schedule an appointment. Be aggressive and advocate for yourself. As you already know, HCC has a mind of its own and the sooner you have a plan of what needs to be done, the better. I am sorry if I am being a bit "aggressive", but I want you to get all your questions addressed by your medical team soon. Hopefully, to ease some of your worries and concerns. Unfortunately, in regards to Medicaid, I don't have any advice. Continue to keep us posted :-)
Posted 5/28/2014 9:32 AM (GMT 0)
Hi David, mamma lama, Susie sass, the Miz, splash dancer,and worried daughter 2!
Thanks for the clarification, splash dancer. I have never had medicaid hem and haw abt any procedure or Rx since i got them last year. They approved me last yr to pay for my TP, and since have been paying for my solvaldi and ribivarin and all other meds. They r amazing. That caught my eye & I thought I had better clarify it.
Believe me I am not shy...I sometimes see me as "stalking" these guys lol.
Yes, the liver board. Meets every wed. every wed of this month i was going to hear from head doc. Each wed passed. I would call, each time and was told "they were not all there, couldn't find the radiologist they needed, so and so was out of town etc. wed of last week head doc finally did call me. We had a good, informative talk, tho it ended with him having to have the ablation expert give his opinion and expert had been out of town. Said I would hear on Monday. I realized mon was a holiday but thought who knows, these guys work all the time, and i was told he'd call monday, and it really could be Monday. Well it wasn't. Tues (yesterday I tracked him down) said he hadn't looked at it yet and would call me later that night when he got to it. Never heard. @!#%!!
When I mentioned I was surprised to only get 7-8 months lesion free, post successful ablation, was when i was told they r aggressive and fast growing. I have always felt i needed warriors helping me fight this battle and now am feeling there is no such thing.
I am also very tired. Some days it simply seems too much to keep trying to get someone on the phone, or to battle my way thru all the front desks.
Susie sass, any suggestions, keep them coming. Thanks for the web site. For me, chemo embo is not specific enough and the theresphere's is sort of a last ditch effort. In my opinion.
Thank you everyone! I wish we could all meet on Wednesdays planning strategies etc for each of us. lol.
There is strength in numbers.
Hugs,
Zo
Posted 5/28/2014 11:35 AM (GMT 0)
Zoarie,
I had hcc before my tp, I had a TACE procedure done on April 20th 2014, the results was the tumor was killed. This TACE is chemo injected in the tumor and the blood vessels feeding the tumor where block so the tumor would basically be starved, and die. After the transplant they did a biopsy of my old liver and found that I had one more tumor that was in the back ground of the first tumor. The TACE procedure was an outpatient procedure. I have a thread somewhere here that explained what procedures I had done to me. I hope this will help you. Ron
Posted 5/28/2014 10:00 PM (GMT 0)
Zoarie,

My tx. center, Northwestern in Chicago, is one of the lead hospitals for Theresphere treatment. My docs wanted me to have it even though my lesion was only 2.1 cm. I had the mapping angiogram done but then got the call for tx before they scheduled the actual procedure. I have a friend who has 2 tumors who has had Theresphere therapy twice this spring. it looks like his tumors are dead.
Posted 5/28/2014 10:05 PM (GMT 0)
I know it well. My hasband had it too, twice if I remember correctly.
I finally got my call and they want to do another Rfa.
It was good to hear from them and have a loan!
Love,
Zo
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