$400.00......down the hatch

illead
illead Member Posts: 884 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Bill's pills came today.  They rushed delivery by UPS.  The drug company called yesterday from MI and told us our portion would be $2000 plus and $500/mo after that.  Bill and I both thought at the same time, we have to call Xia, the financial wizard at our cancer center.  She said they weren't supposed to call us until they talked to them.  She ran some numbers from our tax records and said, "you won't pay anything".  She faxed the info to the drug company and they called us right back and said we would have them today.  We are good for about 16 months then we have to be reevaluated.  We have no clue who paid the bulk of it but the co-pay is being paid by Humana, our drug supplement to Medicare.  We were surprised that it is considered a Tier 3 drug, Tier 4 is the highest....yeow!

I wanted to share a little about Ibrutinib.  Don't take this as gospel beause in my research I can't be exact.  I am pretty sure though that we read or heard that Ibrutinib is still in clinical trials for B-cell lymphomas.  About a month ago it was also FDA approved for Chronic Leukocytic (sp) Leukemia.  We listened to a Webinar (thank you Roquie for alerting us on that).  It was a talk by Dr. Brad Kahl from the Univ of Wisconsin.  He also was on the research team with Bill's Stanford doctor.  I have been monitoring his work since Bill was diagnosed and he is one of the doctors besides the 2 German ones that Bill emailed about an SCT.  His talk was very informative .  It has not become available on the LLS site yet but I am sure it will.  Even though it is about MCL, it is very educating about B-Cell lymphomas and the new targeting drugs.  One of the nurses at our cc told us that these type of drugs are a real break through and the thinking is that one day they will take the place of many chemo regimes.  After Dr. Kahl's talk, it was open to quesions, one woman said that her husband relapsed from MCL with some cancerous lumps on the back of his head and after taking Ibrutinib for 5 days they were gone.  She asked Dr Kahl if the Ibrutinib kills the cancer cells or does it keep them from reproducing.  There was a few seconds of silence and in a low voice Dr Kahl said "it kills them" She then asked if it could get rid of the lumps on the back of his head in 5 days, again a pause and he said "yes".....nothing more, it was chilling.  We just wanted to share that because we feel there is some real hope out there.

We hope this brightens your weekend a little, our best to you, Bill & Becky

 

 

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    Bills meds

    Hi Becky,

     I bet you both are very happy to have Bills medicine cost covered for the next 16 months. The last thing any of us need is the added worry of how we will pay for treatments or medicine. I'm very pleased about the coverage I'll be starting May 1st, once we become permanent residents of Oregon. No co-pays, out of pocket, and the monthly premium is only $104.00. I won't even receive a bill, just a statement showing what medicare and  my supplement paid. I still haven't heard anything back regarding my eye biopsy, but will share the results as soon as I hear anything. Take care and keep us posted how things progress with Bill.

    Much love...Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

  • illead
    illead Member Posts: 884 Member
    #3
    allmost60 said:

    Bills meds

    Hi Becky,

     I bet you both are very happy to have Bills medicine cost covered for the next 16 months. The last thing any of us need is the added worry of how we will pay for treatments or medicine. I'm very pleased about the coverage I'll be starting May 1st, once we become permanent residents of Oregon. No co-pays, out of pocket, and the monthly premium is only $104.00. I won't even receive a bill, just a statement showing what medicare and  my supplement paid. I still haven't heard anything back regarding my eye biopsy, but will share the results as soon as I hear anything. Take care and keep us posted how things progress with Bill.

    Much love...Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

    Thanks Sue

    Hope you get some answers tomorrow, we'll be waiting.  Does the state of Oregon pay your Medicare supplement?  Maybe we should head North Smile

    Becky

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    illead said:

    Thanks Sue

    Hope you get some answers tomorrow, we'll be waiting.  Does the state of Oregon pay your Medicare supplement?  Maybe we should head North Smile

    Becky

    No

    Hi Becky,

      No, my Plan F medicare supplement is through Stonebridge Life insurance. Their home office is in Rutland VT. Maybe they have it in California. You could call their main number and see where it is offered. 1-888-272-9272. My yearly deductible was $5,000.00 and monthly premium $138.00. Co-pays were $48.00 for each doctor visit. If I was to land in the hospital while on my existing plan, it would cost me $465.00 a day(out of pocket) for the first 7 days. I'll be so relieved when May 1st gets here!  Well..gotta run, my youngest son is cooking baby back ribs on the grill for diner tonight. Beautiful day today. Talk soon...Love, Sue

  • illead
    illead Member Posts: 884 Member
    #5
    allmost60 said:

    No

    Hi Becky,

      No, my Plan F medicare supplement is through Stonebridge Life insurance. Their home office is in Rutland VT. Maybe they have it in California. You could call their main number and see where it is offered. 1-888-272-9272. My yearly deductible was $5,000.00 and monthly premium $138.00. Co-pays were $48.00 for each doctor visit. If I was to land in the hospital while on my existing plan, it would cost me $465.00 a day(out of pocket) for the first 7 days. I'll be so relieved when May 1st gets here!  Well..gotta run, my youngest son is cooking baby back ribs on the grill for diner tonight. Beautiful day today. Talk soon...Love, Sue

    Got it

    I just didn't understand.  We have AARP supp.  I was just wondering why it makes a difference to live in OR.  You don't have to answer tho, you have too much on your mind and it's not important, think you explained about it awhile back.  Know what you mean though waiting for stuff to kick in.  I was sweating April 1 getting here .  If something happened before I got Medicare it would have been outrageous too. Hope all is well and you won't have to deal with that. We went to a pot luck at the park with friends, it was gorgeous here too but bet your ribs were better than pot luck, it's the thought that counts Smile  Becky

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    illead said:

    Got it

    I just didn't understand.  We have AARP supp.  I was just wondering why it makes a difference to live in OR.  You don't have to answer tho, you have too much on your mind and it's not important, think you explained about it awhile back.  Know what you mean though waiting for stuff to kick in.  I was sweating April 1 getting here .  If something happened before I got Medicare it would have been outrageous too. Hope all is well and you won't have to deal with that. We went to a pot luck at the park with friends, it was gorgeous here too but bet your ribs were better than pot luck, it's the thought that counts Smile  Becky

    Age...

    Hey Becky...it's age. In Washington you have to be 65 to qualify..I'm only 63. In Oregon you can get the supplement at 62. Sorry I didn't explain it better. A lot can happen in 2 years, so moving to Oregon wasn't a problem for us, and with Hood River being an area where we always vacation/fish, it felt like a great option. Kill two birds with one stone...live where we vacation and also have excellent medical coverage. It's a win, win for us. Love...Sue 

  • illead
    illead Member Posts: 884 Member
    #7
    allmost60 said:

    Age...

    Hey Becky...it's age. In Washington you have to be 65 to qualify..I'm only 63. In Oregon you can get the supplement at 62. Sorry I didn't explain it better. A lot can happen in 2 years, so moving to Oregon wasn't a problem for us, and with Hood River being an area where we always vacation/fish, it felt like a great option. Kill two birds with one stone...live where we vacation and also have excellent medical coverage. It's a win, win for us. Love...Sue 

    Okay

    Now I do get it.  Bill says he heard Oregon has had 0 sign up for Obamacare, it's always a state of it's own, very accomodating to tourists but also very protective of infiltration, so hope they haven't shot themselves in the foot Wink Sure hope you can beat the system.  Love to you too, Becky

Discussion Boards