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Switched Oncs-The Best Thing I Ever Did!!!


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#1 Judy2

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Posted 28 December 2011 - 07:57 PM

Hi Everyone. A great big thank you to everyone on this board. I  had posted about some problems I was having with my old  onc and everyone encouraged me to switch. It was a difficult move for me as I hate change but it was the best thing I ever did. My new onc. is extremely nice, extremely knowledgeable and very accessible. I cannot begin to thank everyone enough for the support you have all given me. This is the most amazing thing- Skittles from this board knew I was going to my appointment alone so she and her husband drive over one hour to meet me at the cancer center. They stayed with me the whole afternoon. I had never met her before, We had talked a few times on the phone and emailed a few times but that was all. I could not believe how  nice they both were to me. This board and the LLS have been a lifesaver for me.

Now for the scary news. I had been off my meds. while I was waiting for Sprycel and in that time period by wbc went up to 29.7. I restarted my Gleevec 2 weeks ago but my wbc has continued to go up, it's now 50.2  I'll be seeing my new onc.again next week when he will recheck my blood. He says it may just take some more time for the Gleevec to work but he is also testing for mutations. I am still waiting for Sprycel and as soon as I have it I will switch over.

Thanks again everyone and a special thank you to Skittles and her husband.

Judy



#2 pamsouth

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Posted 28 December 2011 - 11:37 PM

Wow Judy, Who ever would have thought that someone from the board, would care about a stranger enough to meet you for your appointment at your new onc so you wouldn't be alone.  Only another CML survivor.  Yep we stick together, Thank God as many others wouldn't understand.

God Bless, and thanks for sharing.  It did my heart good to hear of others willing to stretch out their helping hands and hearts to another CML survivor.

PamSouth


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#3 pammartin

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Posted 29 December 2011 - 12:21 AM

Hi Judy,

I am glad you had your appointment and you were not alone.  How nice of Skittles and her husband to be with you during your doctor change.  Because I have spoken to both you of you, I believe you are all very special people, taking the time to talk to others and help almost immediately.

If the Gleevec does not work all that well, the Sprycel should kick in and take over.  Is there any word when you will be receiving the Sprycel, I know when we talked you were not sure.  Keep us posted, I will talk to you soon, and Skittles, thanks for being there for Judy and taking the time to talk with me, what awesome people you and your husband are!

Pam



#4 Judy2

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Posted 29 December 2011 - 12:45 PM

Hi both Pams. Yes, the people on this board are awesome. I did receive a 14 day supply of Sprycel from Bristol-Myers but that is not enough to hold me over until my grant kicks in. The good news is the cancer center where I am now going is making calls for me, hopefully to try and procure more Sprycel for me, enough to tide me over till I can  get it from the pharmacy. When I have enough in hand I can then begin to take it. I just hope it works, I  hope I don't have a mutation. Also, my uric acid level is up again, the last thing I need is another uric acid stone.

Pam Martin. Have you made any progress toward getting a new onc or at least going for a 2nd opinion? Even if you can't get your insurance to pay for a different onc at this time do you think you should get a 2nd opinion anyway, even if you have to pay for the appointment yourself? Having the right doctor really does make a huge difference. Pam South also switched oncs and I think she is happy with her decision. If you need any help just call me. As a side note my new onc is friends with Dr. Druker, he used to work with him. Would you think of coming to Boston for a 2nd opinion?

Judy



#5 Skittles

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Posted 29 December 2011 - 01:52 PM

Thanks for the very kind words Everyone!  We were thrilled to be able to be there for you Judy and it was wonderful meeting and spending time with you.  You are in good hands now and that is such a blessing!!   We are all here for each other and the reward comes from seeing each do well with this thing called CML!

PamSouth, just a thought, if you do consider getting a second opinion you might want to see Dr. Talpaz in Michigan who is a lot closer and a CML expert that also answers emails.  Below is the information on him.  Hugs to All, Skittles

University of Michigan Comprehensive Cancer Center
1500 East Medical Center Drive
Room 4303
Ann Arbor, MI 48109-5936
Academic office telephone: (734)764-8195
Academic office FAX: (734)647-9654
E-mail Address: mtalpaz@umich.edu


#6 pamsouth

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Posted 29 December 2011 - 04:14 PM

Hi Skittles,

I did a copy and past of all the info and put it in a file on my Mac Laptop.

I live in Greenwood, Indiana just a couple of mile south of the Indianapolis county line road.

Last October I went for a second opinion at Indiana University Simon Cancer Center In indianapolis, In about 15 miles north of where I live.  They have a group of specialist who specialize in leukemia's.

But if I ever need to call them, Univ of Mi.  for advice, I have all the info.  Thanks. 

I will be switching to Indiana University Simon Cancer Center of Indianapolis, Indiana, this coming January.  I just had to wait and get all my ducks in a row.  I had to jump thru hoops, with all the billing people, at Indiana University Simon Cancer Center, (which according to LLS is the  #1 Premiere cancer center of Indiana) to make sure,  the doctor/onc and also the hospital the oncologist's  are attached too, that will be doing all my labs and test, are paid for my health care VEBA, BLUE CROSS OF MI UAW RETIREE.

I don't  know if any of the following info will help anyone else, regarding billing and coding but here goes.  It gets kind of complicated. Some states insurance are changing their way of allowing certain codes to pay for patients onc office visits, who have blood cancers and take oral drug therapy, instead of IV infusions.

My husband is retired from Chrysler.  As you probably  know the auto maker filed a bankruptcy back in 2008 ( i think) and we weren't sure we were going to have health insurance.  I will be 64 New Years, so 1 more year and I will have medicare as primary.  My husband just turned 70 years so he has Medicare Primary and our secondary VEBA HEALTH CARE which is ran by the UAW Auto Industry.


Anyhow Chrysler had a contract with the auto UAW to put so much money, every quarter, in what is called a VEBA Health Care Account ran by the UAW Auto, I believe Chrysler was short by a lot of money of what they agreed to, because they filed the bankruptcy. 

The UAW VEBA health care, for all the auto makers insurance, is Blue Cross of Michigan regardless of what state you live in, they are the hub.  We get bad new every year from the VEBA UAW how the money is all tied to the world economy which is very unpredictable, and the stock and so forth, very complicated to understand it all.

But so far our Insurance, prescription thru Medco  is paying for my Gleevec except for a small co-pay.

Although they, our Medco Prescription, who has a contract with our health insurance, used to send me a 90 day mail order of Gleevec.  Changed the contract about a year ago, to only send me a 30 day mail order of Gleevec, right down to the wire.  Also my Onc has to call the UAW Health Care ever December, to verify I am still taking the drug, Gleevec.   That seem odd to me as the insurance does know I go to the ONC every 3 moths, and she writes the prescription, but perhaps it is a different department, but then it has to go thru an approval board again for them to pay for the Gleevec for the next year.


I wasn't sure I was going to switch to the new doctor at IU, as I had to get everyone on board with coding the bill so my insurance would pay for it.  When I got my EOB, from when I went to Ind Univ for a second opinion in October 2011, Blue Cross paid Zero for the doctor visit.  So I did a dispute with Blue Cross and called Blue Cross.  I also called the oncologist office and a few people involved in the chain of coding the billing.   I had to jump thru a lot of hoops, but finally got everyone on board.

Here is the deal, my Blue Cross of Michigan UAW RETIREE PPO, does not normally pay for office visits.  However starting in 2012 Blue Cross, will pay for 4 primary doctor visits (with a co-pay)  PRIMARY DOCTOR ONLY!!  Of course our deductible/out of pockets more then doubled.  Other then the 4 primary doctor visits for 2012 the insurance pays for no doctor visits, that is unless you can get an Oncologist to use the code V67.2.  Most onc billing and people who do the coding are only use to using this code V67.2 for follow to chemo Infusions. Not for blood cancer that take oral medication!!

There is a code "V67.2" that is normally used when cancer patients have IV Infusions follow ups, that Blue Cross of Mi. will pay up to 3 follow up office visits, per every 30 days, after an infusion, with this code V67.2 ONLY !!

Anyhow back to IU Simon Cancer Center.  When I went to the new doctor in October  2011, I got an EOB from my insurance and they paid "Zero" because it was just coded as an office visit not the V67.2. follow up to chemo,  that allow 3 office visit in 30 days follow up to oral or IV Infusion chemo. 

I had to jump thru a lot of hoops at Indian Univ Simon Cancer center billing chain, before I could finally get the financial director to call BLUE CROSS of MI, that is was legal to use this code V67.2 for CML while taking Gleevec, no IV Infusions.

Most insurance will only allow this code V67.2 to be used for follow up office visit to infusion IV Chemo Drip.  I kept explaining to everone in the billing chain, please just call my insurance company and the billing at IU, recycled me from person to person, only to repeat call to the same people on and on.  although I must say they were very nice and spoke in a gentle tone. Just wasn't getting anywhere, just a loop.

I was going to just forget it but, I decided to make one more attempt, and called, again, the head of financial service, and said "look I am being recycled from person to person.   All you have to do is call call this number at Blue Cross of Mi and they will give you permission to code my visits with the V67.2, I am not committing fruad.   So she said she would do that.

I got a call from that lady at IU Cancer center, Head of Billing or Financial Director, and yes Blue Cross said they, have the right to interpet the Rule to use the code V67.2 for follow up to CML on an Oral Medication to kill the cancer, and would allow them< IU Oncologist, to use the code V67.2 for my office visit follow up, and  the insurance would pay 100% no co-pay.

Even some of the other leading hospitals in the Indianapolis In. area absolutely will not use the code V67.2 except for IV infusions as to follow office visit after infusion.

When DX in 2005 I went to a leading ONC BMT group in that was located inside one of the large hospitals in Indianapolis.   The nurse absolutely refused to use the code V67.2, before they sent it off to their billing company. The nurse keep saying I was asking them to commit Fraud.  However when I called Blue Cross of Mi, that I take an oral drug every day, as many blood cancer patients do, no infusions, I thought it was unfair that they would NOT pay oral chemo but not drug chemo office follow ups.

It was the dispute that I wrote to Blue Cross that straighten out the whole mess.   When you do a dispute, that is much different then talking to someone on the phone at blue cross, who often know little about interpreting codes or even the doctor or hospital billing.

  The dispute goes to an impartial board that has the right to overrule the oncologist/hospital billing etc.  The Blue Cross dispute board has the right to chose the rules and interpetation of the codes, not the oncologist/hospital or billing dept.  I finally got a letter (back in 2006)  that they, UAW Retiree Blue Cross of Michigan, would interpret and allow the V67.2 to be used with my diagnoses of CML & taking an oral drug like Gleevec, that kills the cancer, so it would pay for my office visits to the Oncologist.

However for the last six years I normally have to make a couple of phone calls to my old onc billing and blue cross, as the old onc billing chain can't seem to get the codes on right the first time, but eventually the billing resubmits or does and and adjustment to insurance  and it get paid by the insurance.  It is just annoying to have to make multiple phone calls ever time I go to the oncologist to get the bill paid, you would think after six year they could get it right.


Back in 2006  I even offered them a letter I had from Blue Cross to the BMT Oncologist in Indiana, but they would not except the letter.  I said to the nurse,  Blue Cross said if you just call them they will be glad to talk to you as they said they have the right to interpret the codes and the rules not you.  The nurse said all 3 onc doctors agreed that would be fraud and they would only allow that  code for iv infusions. So I just did a dispute to Blue Cross and they over ruled the BMT Oncologist billing dept.  In fact I had paid on the large bill and they  owed me a refund, after my insurance paid, and even after I called billing and the nurse, they refused to refund my overage and would not sent me a statement showing my credit.  I believe it was only about $50.00 so I just let it go, as I was happy the insurance had paid the bill, and I was to ill to keep fighting and arguing with them,  the nurse had even said "I don't know how you got the bill paid by the insurance but I admire your pitt bullishness.  Can you imagine saying such a thing to a newly diagnosed cancer patient.  I never went back there!  A year later one of the nurses from the group called to see how I was doing I never took the time to even call them back and tell them how rude they were. 

Since then I have learned/ realized that very few doctors understand insurance or handle the insurance. So that nurse was pulling my leg when she said all 3 doctors agree with her, again that was back in 2005.

However back this last October 2011, the new onc at Ind Univ Simon Cancer Center, said make sure you call your insurance and make sure you know what is covered, before you do anything else, so you don't get stuck with large bills.  I said to  oncologist do you have anything do to with the codes or billing, he said no, he doesn't handle that.  So I instantly thought of that nurse back in 2005 that told me the doctors agreed with her ,that it would be fraud to use the code V67.2 for office visit that code was for office visit follow up to IV infusions.  Doctors don't even mess with the billing from the way I get it.

Odd though his nurse at IU Simon, said she didn't code either, in fact she told that to me on two or three occassions.  But in the end the financial director, that called me last week, said remind the nurse Ms.... for Dr.... to code it with the V67.2.  So in fact the oncologist nurse does code!!! Also the financial director got the billing dept to change the code for last Oct 2011 visit and said give them a little time, but it will be corrected, so you don't have to pay for the office visit nor further visits.  I said Merry Christmas as that was a great gift not to have to pay for visit.  As you all know if you need to change TKI drugs, that may mean even more office visits. We are retired and our insurance goes up and up every year.

I know this was long, but I thought it might help others that are in the same boat!!  I think perhaps since CML is rare and there are lots of different Blue Cross plans who may not allow the code it is hard to get the medical professional to change their way of billing.  Hopefully with a push from LLS they will continue to other get insurance companies to pay for office visits.

I am a little disappointed as LLS send me this list of number to call for financial help.  I called and sent in a form and they agreed I was eligible for up to $5000.00 a year. But after you go over the exclusions which are many.  As far as helping to pay for our insurance it has to be in my name only.  My husband is primary and I am his dependent and that is the only way the UAW trust will send it in.  Even though they take the family plan out of his check which is double then single LLS still will not help with insurance payment because my husband name is on it as primary and it must only have my name on it.  So yes I am eligible, but it covers nothing!!  Go figure!

I recently read an article that a few state have changed the laws regarding insurance to pay for cancer and oral drug medication and not just for infusions.

Sorry this was long and redundant, but perhaps it might help other.  Bad enough to deal with cancer, but then you have to deal with all this, too. 

PamSouth


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#7 Judy2

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Posted 29 December 2011 - 05:19 PM

Hi Pam South. I'm glad you figured out the billing, a lot of good info. Thanks. Do you remember where you read the article about certain states changing ins. laws to pay for oral chemo?

Judy



#8 janne

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Posted 29 December 2011 - 08:10 PM

http://www.scld-nci....databytes40.pdf

Judy2,

This might help.


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#9 Judy2

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Posted 29 December 2011 - 08:27 PM

Thank you, Janne. Unfortunately my state isn't one of the ones covered. Hopefully this is the wave of the future. I do not understand how ins. companies can justify paying for I.V .chemo and not oral. You would think it would be less expensive for them to pay for oral as they don't have to pay for the cost of administering the medication.

Judy



#10 pamsouth

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Posted 29 December 2011 - 08:52 PM

Janne,

Thanks for the link, it is excellent.

I think I remember reading somewhere that Michigan was  changing their laws, as well.  Not only for oral drug treatment verses  IV infusion Drip, but to pay for office follow up visit to the oncologist if you are on oral chemo drugs.

Normally our Blue Cross Of Michigan UAW RETIREE DOES NOT PAY FOR ANY OFFICE VISITS, except for Oncologist visits for follow up to chemo, which most doctors here are only use to insurance paying for IV Drip follow ups to oncologist. It must be coded with a V67.2 Office Visit or insurance will not pay the oncologist.

Next year 2012 our insurance will be paying for 4 primary office visit with a $25.00 co-pay, but only to a primary doctor.  But then our out of pocket and deductibles more then doubled for 2012.  Not counting what we retirees pay for monthly insurance and cobra for dental and optical.  Plus Medicare deducts almost $100.00 a month from my husband Social Security.  Anyhow if you are in need of a lot of doctor appointment, especially having cancer, we could be out thousands of dollars. So I really needed to push the billing dept at the oncologist,  on using this code, V67.2 so it will pay for my oncologist office visits.

I have been on Gleevec 6 years and if I were to need to change drugs, well I could end up going to the oncologist a lot more then every 3 months, that could add to a lot of money and stress.

Thank God our insurance hub is Blue Cross OF Michigan UAW RETIREE PPO.  Even though we live in Indiana the Insurance for the Auto Workers is controlled by the UAW and all the auto makers insurance Blue Cross hub is Blue Cross of Michigan regardless of what state you live in.

Most Blue Cross of Indiana will not recognize the code V67.2  office visit follow up to the oncologist, if you are on oral chemo drugs it must be IV Drip Infusions .  Blue Cross of MI UAW PPO will allow the V67.2 code which  allows for 3 follow up visits to your oncologist, every 30 days,  if you are diagnosed with cancer and are on oral drugs.  Again most insurance in Indiana only allow that code to be used as follow up to IV Drip Infusions. 

So I figure I must be one of the few in this area with CML on a oral Drug who Insurance hub is in Michigan and allows the rules or interpretation of the Code V67.2 to be used as a follow up to my oncologist on an oral drug.

It hard to get billing, used to a new way of thinking, then what they are use to dealing with in the past.

Perhaps we CMl patients keep up with the laws better then the billing department.

It is just convincing them to make a simple phone call to your insurance company.  That sound simple right? Wrong, took hours and days, a couple of weeks, on the phone only to recycle me thru numerous people and me trying to convince someone to call my insurance.  No one seemed to want to take the time or responsibility. 

Enough to make a person give up!  In fact I almost did, then I said OK Lord help me give it one more try.

Bingo, Looks like the Lord heard my prayer.

Like you are fighting for your life!! Right?

Thanks again PamSouth


PamSouth


#11 pammartin

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Posted 31 December 2011 - 09:27 AM

Judy,

I have a tenative referral to Cleveland Clinic to see, Dr. Matt Kalaycio, who specializes in CML.  I will see Pittsburgh at least one more time, at least, Trey has mentioned to many people waiting for the first three months to see what results you have is a positive step.  One question I do have concerning this three month milestone all the doctors seem to be waiting for in my case, if i were on the Sprycel for three months, at any dosage, I could see the significance, but because I had a three week break, I still am a bit behind on the timing.  The interesting piece of this for me, is Pittsburgh was unconcerned with tenative results two weeks ago, stating they were irrelevent to share becaues it had not been long enough with nothing to compare them too, but yet I am still almost a month away from that three month milestone when i travel back to Pittsburgh on January 13.  I am just trying to wrap my brain around the importance of this three month milestone on one level and the insignificance of it on another. (if that makes any sense).  As far as traveling, I appreciate your input Judy, and I would not be opposed to travel to your area.  Trey put it best a while ago, something to the effect, "Cost should not matter if you need to see a specialist."  I will keep you posted, let me know about the Sprycel, I ended up with two trials before my prescription coverage began, there should be no problem for you receiving a few trials if the paperwork is completed.

Take care

Pam



#12 Judy2

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Posted 31 December 2011 - 03:35 PM

Hi Pam. Regarding the 3  month milestone, my new onc.told me when my first 3 month PCR test came back elevated he would have switched my med. then. I guess the 3 month mark is a good indicator of how you will do in the long run. Like you said, though, since you were off med. for 3 weeks not sure if this will apply to you. Hopefully, you will be able to see the onc. in Cleveland soon. Please keep me informed. After reading what everyone is saying I'm really glad you are going for a 2nd opinion, It will be interesting to see if the new  onc. agrees with your dose of Sprycel. As for me, my new oncs office is going to help me get Sprycel, also they have already set me up with a social worker. They are amazing!!! By the way, I am starting Sprycel at 50mg.

Anyway, I'm kind of nervous because my wbc is still going up, even though I'm back on Gleevec while waiting for Sprycel. Also my uric acid is elevated and my creatinine went up a little again. My blood work will be done again next week and will also see my onc.

A Happy and Healthy New Year.

Judy






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