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Auto cell decision

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

I'm in Wisconsin and my dilemma for today is that my insurance will cover a stem cell transplant at either Carbone cancer center in Madison (NCI rated) or Froedtert Hospital. Froedtert is not NCI rated but very reputable. 

Madison is about 90 minutes away, Froedert about 25.  I certainly don't want to choose by driving time.

a lot to think about!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

A lot of what is involved with SCT is inpatient, which would render drive times irrelevant during those periods.

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

Have you visited either of these hospitals?

Your local oncologist can make referral appointments to both. You can speak to a transplant team about procedures and protocols. That should help you make a decision.

I was referred to Duke University (a four hour drive from our home) for a SCT consult. The way they do it is inpatient for a week to 10 days. Patients are then discharged to a nearby, affiliated apartment. Patients check into the clinic everyday for blood work and physical exam. They can be easily re-admitted, if needed. Patients are there for an average of three months. 

Insurance covers this. It is after all, less expensive than inpatient care. And it is safer--MRSA and C-Diff (among other things) don't live in the apartments. 

Good luck making your decision.

Love and prayers,

Rocquie

 

po18guy
Posts: 1009
Joined: Nov 2011

NCI designation is a huge recommendation. Make inquiry as to how many transplants (successful and not) that each has done. Make sure to separate autologous stats from allogeneic, as there is a substantial difference. Success and survivability stats are meaningless unless they represent the exact type of transplant that you will receive. Check their long-term follow-up program and see if they have survivor's reunions. Compare and contrast their conditioning chemotherapy/radiation regimens. Maybe even a brief interview with a representative from their respective transplant teams. It's your life!  

At the start of my journey, I wanted to stay local, due to drive times. It is clear now that had I stayed local, I would simply have died. DW made the decision to seek treatment at Fred Hutchinson, an hour away. In eight years, we have made that drive hunderds of times, as it is part of the new normal - part of life. You will have the great advantage of not having to deal with Graft versus Host Disease, which is associated with allogeneic transplants. That is huge.  

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Most of my research is talking with people at this point And Internet searches. I work for ophthalmologists but they haven't quite given me a solid opinion yet.   My daughter is a NP and her contacts are leaning towards UW Madison.  From my research however Froedtert which is associated with the Medical college of WI has actually done more Auto SCT in the last several years. population could certainly be a factor.  Madison is big on research and has the NCI rating. I guess I have to do more research, aftercare, etc.  I'm inpatient right now for my first RICE so have plenty of Internet time.  

You guys are more of a help than you ever will know! I appreciate every bit of advise.  This is so scary and confusing. 

Sharon

illead's picture
illead
Posts: 846
Joined: Aug 2012

Hi Sharon,

     This has nothing to do with an SCT, but just some input that may be helpful.  My husband has Mantle Cell and in my research one of the doctors who I found to be very passionate about finding a cure for it is Dr Brad Kahl at the Carbone Center.  He does podcasts for the Lymphoma Research Center and was part of the team that worked with Ibrutinib a new target drug for MCL.  He has also been very good about answering a few emails from us, not ever meeting us.  I say all this only to suggest that maybe that says a lot about the reputation of the Carbone Center and the integrity and caring of many of their doctors.  I know nothing about them though other than Dr. Kahl, but just wanted to throw that out there.

Hoping for the best,

Becky

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

I've decided to have consults at both Facilities.  Froedtert/Medical College of WI., And UW Madison.  Checking with insurances of course, although I'm ready to pay the bill, for piece of mind if insurance will only pay one. Appointments are set for next week. 

Sharon

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Sharon,

The trips/consults are very worth the effort.

A PLAN that you are most comfortable with, and that is objectively sound, is worth the time spent in researching, especially something as serious as SCT.  I hope you continue to share if it is of value to you. Many, many of our regulars have had SCT.   

Best of luck with these matters,

max

lindary's picture
lindary
Posts: 662
Joined: Mar 2015

I have a sister-in-law who lives near Greenbay. She has a friend who is in her 80s who had SCT earlier this year at Madison. It's been about 2 or 3 months it was done. I know she was originally scheduled for last year and had a frustratig time before the SCT because her blood counts kept dropping.  They finally stablilized and she had it done. I have not talked to this woman so I really don't know what her experience was like. I guess all went smoothly. 

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Well, I've met with both SCT teams.  Both teams were very knowledgable. BOth agree it is necessary and agree on the Autologous for now.  Everything explained.  Medical College of Wisconsin actually mentioned doing it outpatient. Daily ( all day) at the facility, home at night.  UW Madison (NCI rated) would be inpatient 3-4 weeks.

I have chosen UW Madison not because they seemed more knowledgable, but because I have had more real people referrals.  Thank you!  My family supports my decision, however I can't say they are happy about it. That part is hard.  Now my job is to keep my blood counts up, pass all my tests etc.

Am I scared?  Yep!!  BEAM sounds very scary! I might have to suck it up and actually have someone take care of me.  I hate that! 

 

po18guy
Posts: 1009
Joined: Nov 2011

We all love someone and desire to be loved in return. When you are incapable of caring for yourself, let love take over. It is in such times that love is proved. You might be surprised to find out who realy loves you. In our lives, we all have a few gems, and some diamonds in the rough. They can sparkle when they care for you. 

You can do this!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

We have to admit our frailty at times, Sal.

I have known more than a few lymphoma patients who were incapacitated, even on first-line therapy.  R-ABVD made me sleep an average of 17 hours a day. My next door neighbor, on R-EPOCH, got so frail and weak that he could not walk, and did not leave the bed except for his inpatient times at the hospital, and he was only about 35 years old at the time.

A gentleman here two years ago named Matthew Butts did most of his first-line as an impatient. 

Humility brings us back to reality, and closer to the truth of who we are. I pray that all goes well,

max

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