I met a young man who recently relapsed with Hodgkins. He is scheduled for an auto SCT in April. He told me this will be done outpatient. He is staying in a two bedroom unit across the street from the hospital.
When I had my auto I was inpatient and it sounds like many of you were inpatient, too. Has anyone had an outpatient auto SCT? Unfortunately, his insurance mandates his care is done in the state the insurance is issued, so his transplant will be done in Billings, MT and they only do 10 transplants a year. He was hoping to go to Seattle but was nixed by the insurance.
He is currently in remission and rethinking the need for a SCT.
Yes Auto tranplants are now being done in alot of centers on an outpatient basis. Met a man a week ago who's wife was having an outpatient auto transplant for multiple myloma.
There are quite a bit of restrictions tho by what I understand such as very frequent return visits of several times per week for monitoring. By what I understand with an auto transplant there is not the risks with GVHD that there are with allo transplants since they are using the patients own cells.
Tell him to stop rethinking! If his doc is recommeding the SCT, he needs to go for it. Unless your friend is an oncologist, he shouldn't make that decision simply because he's in remission.
I agree with Kelly. But I'd also suggest he have an actual consultation with a transplanter/ And nothing against Billings but I'd want someplace that does far more than 10 a year. Has he appealed to the insurance company? They should give him a walk on something like that.
I personally would be less concerned with the procedure being done as an outpatient, since I believe that's becoming more common, and much more concerned with the lack of volume at the Billings location. Only 10 a year would worry me a little. I do realize the frustrating parameters insurance companies sometimes impose. Is there any negotiating with them or appealing that decision? Is there an insurance state regulatory agency to plead the case to? I'm just throwing out ideas.
I'm glad he has you, a veteran, for support! That's got to help as he's weighing his options.
Thank you all for your replies.
If he belonged to a private insurance I would highly recommend he appeal. I had private insurance and had to appeal three times in order for the company to hold up to their initial quote on coverage - so if he had private I could help him with the ropes. However, he is on Medicaid. Can you appeal Medicaid? I do know we have an insurance commissioner here in Montana.
I am reading that many of you are questioning the hospital performing only 10 transplants a year. That is my concern to. I do believe there is something to be said with hospitals that transplant hundreds of patients a year. His harvest is in 1 1/2 weeks and his tranplant is in April - what would your recommendation be to me in helping him? Is it too late? I read his blog tonight and he may be resigned to the insurance company limitations.
I don't know if you can appeal Medicaid. BUT, you can call a lawyer and see. Most consultations are done at no charge these days.
I don't know about the hospital in Missoula, but I figure if Rose's mom is recommending it, it must have more experience. When I was getting ready to have mine, my insurance company at the time wouldn't even consider a place that did less than 50 transplants a year.
Here's the general concern about experience, as I understand it and as it concerns me. Nobody's going to screw up a transplant, the procedure is as simple as starting an IV. However, that's not all there is to it. Things can go good but they can also go not-so-good and even go south very quickly. The more experience a center has with transplants, the more they have learned nd experienced how to turn things around.
I hope he can get into a more experienced place.
Though it would not be my recomendation to go for a transplant anywhere in Montana - (Missoula is not listed as a nmbt treatment center and I know for a fact that critical tests are sent to Spokane for reading - so delays in results can be counted in days). That said, of the facilities avail in State Missoula would be the best I am aware of and not that far from Billings. Like you, I am wondering if this young man's understanding is as complete as it needs to be.
When I was first told I would need a SCT, we were going to try for an auto and they were going to try and do this as an out patient, I ended having to need an allo, since my bone marrow would not produce any cells. I live in Spokane and I could have chosen to try and do an auto closer to home. My oncologist told me if this is the route I chose that he could do it here in Spokane, but once I consulted in Seattle I knew I would have it there. They are so much more experienced there than in Spokane. There are not that many done here and the specialists I have seen here since returning home, are not used to dealing with transplant patients and the problems that arise with them. I would tell your friend to appeal to his insurance company and go public with it if needed. If a SCT is being recommened, he needs to go for it, best chance of long term survival. I wish him the best.
My young friend had his high dose chemo last week and STC on Monday, all outpatient. Up until yesterday he had no complaints, but I knew the "MAC truck" was just around the corner. Yesterday he wrote on FB he was in the most pain he has ever experienced. Last night he said he was admitted into the hospital with an esophagial ulcer. I responded on FB that is where he belongs, in the hospital!
I still am aghast at an outpatient SCT! When he first went down to Billings he said the apartment the hospital provided was dirty and he requested a new apartment - what happened to the utmost important sterile environment? With his comment on his pain I wondered if he had at the push of the nurse's button narcotics to take for his pain? I remember being on narcotics for my pain and it hurt so bad to swallow the nurse set up that vacuum tube to suck the spit out of my mouth. I just can't fathom outpatient . . .
Needless to say, he hopes to engraft soon and get on home!
Since his insurance required him to stay in-state, the state insurance board should be notified. That's a dangerous situation that could have been avoided.
The apartment building we had in Seattle was reserved for transplant patients. Our apartment was not clean when we moved in. My wife probably would have re-cleaned it anyway (that's just the way she is). So she went to a second-hand clothing store, got some old clothes and cleaned it herself. We learned that the entire cleaning staff was fired shortly after that.
I have multiple myeloma and had an auto SCT this past winter. The procedure was outpatient. I had the first round of chemo, stayed overnight to be checked, then went home for a week. Same after my cells were harvested. For the second round of chemo and transplant, we stayed across the street from the cancer center (Johns Hopkins). Everyone in the building was being treated for cancer, so we were all very respectful of one another and our care-givers. I went to the cancer center daily for blood counts and transfusions as needed. About a week after the second round of chemo, I was really sick and was immediately admitted to in-patient care, where I stayed for 6 days. Then I went back to outpatient care. That process worked fine.