[kjpoppit]

Changing plans? Need to vent.

by kjpoppit on Sun Mar 16, 2014 7:25 pm

I thought my plans were pretty laid out. Do my chemo, go to Seattle at the SCCA and have transplant. My doctor in Alaska thinks I am ready to go for my autologous transplant. I have been to Seattle and seen the place and talked to a myeloma specialist and transplant specialist. My doctor is contacting the Seattle doctor sometime this week.

Now my husband wants me to consider going to the Mayo Clinic in Rochester because he has family in the area which would be a source of help for us and great comfort to him. I wish he had voiced a strong opinion about this earlier but he didn't. I think maybe he is starting to get a little overwhelmed by all of this.

This puts me into a tailspin though because I thought I had this planned. I was settled on what needed to be done.

I don't even know if it's feasible to change things this short notice. I don't really want to put this off much longer but have a feeling if I try and change things now then I will be delaying my treatment because I am pretty sure the Mayo isn't going to say, "oh, you need a transplant? Come on down and we will get you started." I would guess they need to run tests and see all my current paperwork and want to see me before they even consider taking me on as a patient.

I already had my second opinion with the Seattle doctor. I am not sure my insurance would want to pay for a third. I guess I will look into this but it has me a bit upset.

Has anyone else been through a last minute change like this?

Thanks for letting me vent.

[wesley]

Re: Changing plans? Need to vent.

by wesley on Sun Mar 16, 2014 8:54 pm

Just got back from Mayo Rochester. Stem cell transplant Feb 11. Couldn't have had better care. I highly recommend Mayo. My doctor there is Martha Lacy.

Wesley

[kjpoppit]

Re: Changing plans? Need to vent.

by kjpoppit on Sun Mar 16, 2014 9:22 pm

Did they do your stem cell transplant inpatient or outpatient?

[cindyl]

Re: Changing plans? Need to vent.

by cindyl on Sun Mar 16, 2014 9:25 pm

My husband sees Dr. Angela Dispenzieri at Mayo for transplant services. Excellent facility and very organized team approach. If you decide to do this, check out the Gift of Life Transplant House, they are very amazing.

We return to Mayo this week for stem cell harvest. We are putting off the transplant because my husband is in remission, and also is having cardiac issues. We are hoping they will provide some input into his declining cardiac function also.

I can understand that the change would be distressing for you. Do you have a support system in Seattle? That is the one thing we don't have at Mayo, so I can see where it would be nice to have that.

[RayGunter]

Re: Changing plans? Need to vent.

by RayGunter on Sun Mar 16, 2014 10:12 pm

You can't go wrong with Mayo. They are top notch with myeloma and for their overall care and hospitality. If you have family there that could help out, I wouldn't hesitate to go there.

I didn't experience changing doctors like you did, so I wish you luck. I would at least call Mayo and see what they have to say. Again, they are one of the best.

[NStewart]

Re: Changing plans? Need to vent.

by NStewart on Sun Mar 16, 2014 10:53 pm

I met a couple in July who had just started treatment with a local oncologist. In October the husband was referred to Penn for the transplant procedure. He couldn't get an appointment with the oncologist who he wanted to see before Dec.26. At the first appointment with the transplant doctor, the schedule for harvesting and transplant was developed and he began the harvesting procedure the beginning of February. He had his stem cells reinfused about 10 days ago.

So, if you decide to get a 3rd opinion from Mayo it may go fairly quickly once you've had your initial appointment. Of course it may take a while to get that first appointment. If there is a support system near Mayo, I think that you really should consider going there.

Nancy in Phila

[dfondell]

Re: Changing plans? Need to vent.

by dfondell on Mon Mar 17, 2014 3:35 am

Outpatient.

I received an autologous stem cell transplant in December at Mayo in Rochester. It went very well. I, too, recommend the Gift of Life Transplant House.

P.S. - I grew up in Nome.

[Wayne K]

Re: Changing plans? Need to vent.

by Wayne K on Mon Mar 17, 2014 10:51 am

I think I would be careful and do the homework. I think the key question here is how the insurance company will react. You don't want to be left with some unexpected expenses.

I doubt they will accommodate given the fact there is no medical reason to suddenly change.

[Nancy Shamanna]

Re: Changing plans? Need to vent.

by Nancy Shamanna on Mon Mar 17, 2014 12:25 pm

Hi Kjpoppit, I don't know anything about your insurance issues, but it seems to me that the Cancer Care Alliance in Seattle must be a very good institution, as well of course the Mayo in Rochester.

How much longer a flight is it from Anchorage (?) to Rochester, as compared to Seattle? Were you planning to return home soon after the transplant, and do you have family at home in Alaska too?

You may not be in hospital for very long with the ASCT, and so this may not be as difficult an issue as your husband thinks. It is variable though, and one can't know in advance how long one must have for a hospital stay. I was only in for three nights altogether, but had a lot of family support at home, and was only a 20 min. drive away from our cancer centre here in Calgary.

Not an easy decision to be sure, since it involves travel to either Seattle or Rochester. Please keep us posted on what you decide to do!

[wesley]

Re: Changing plans? Need to vent.

by wesley on Mon Mar 17, 2014 1:54 pm

HI

My recent ASCT at Mayo Rochester was an outpatient procedure. I don' think mayo does any inpatient transplants. I had little in the way of significant symptom management challenges after transplant (e.g., nausea, diarrhea, fever, pain). I had no inpatient nights during the process.About a third of ASCT patients have an inpatient night or two for one reason or another.

"Gift of Life" Transplant House was wonderful for the 4.5 week stay. A very supportive environment and very close to the hospital. It costs $30 per night.

The process is a bit of a tough ride from Day 6 to about 15 (day zero is transplant day) - It is hard to eat with no appetite, and the Mayo staff and your caregiver will have work with you to ensure that you get enough to eat and drink.


The culture at Mayo is very patient oriented and servive oriented. Their techological capacity and "patient centered approach" is a wonderful combination. Check on insurance coverage....

Wesley