We had an appointment with Dr. Rachel Salit at Fred Hutchinson Cancer Center in Seattle this morning. We went in thinking that we wanted to move ahead with R’s bone marrow stem cell transplant, because he’s developed a new high-risk gene mutation called NRAS. This mutation means the disease is progressing and will more likely turn into Acute Myeloid Leukemia (AML), at which point, treatments are generally ineffective and death can come quickly (think stage 4 pancreatic cancer…once you know you have it, it’s often too late to treat, and patients don’t have effective treatment options).

While Dr. Salit suggested moving ahead with the transplant while R is otherwise healthy, and the NRAS mutation is worrisome (combined with the ASXL1 gene mutation he already has), there may be a major hiccup in moving forward at this time.

Our private insurance may not cover it, and the cost is typically between $500K and $2 million, depending on complications after transplant that could require a longer hospital stay and increased follow-up care. See below for Facebook posts I read re: costs for other Myelofibrosis (MF) patients.

WHY INSURANCE MAY DECLINE THE TRANSPLANT NOW

Every MF patient is assigned a “risk level” based on multiple criteria including blood counts (white, red, platelets), level of scarring in the marrow (called “fibrosis”), genetic mutations, % of immature circulating blood cells, etc. The standard method for calculating the risk puts R at an intermediate risk, not a high risk. The NRAS mutation is not yet included in the stratification/risk model, partly because it’s only present in a small subset of MF patients (5-10%). Therefore, there isn’t enough data on it, although it’s generally agreed that it’s BAD for the patient (greater incidence of transformation to AML, MF cancer relapse and post-transplant complications).

In their justification letter, the doctors at Hutch will highlight R’s need for transplant sooner rather than later. Their financial services department will then coordinate with our insurance to see if R gets approval or not. We don’t know how long this will take. Dr. Salit said that more likely than not, they will deny the request.

If he DOES get approved, he could start chemo and the transplant in 4-6 weeks. If he does NOT get approved, we’ll have to wait until his condition worsens and he hits a high-risk level using the existing scoring model. At least the doctors do not think R is in imminent risk of transformation to AML. If he was, there would be signs in his blood work.

We learned lots more at this appointment, and I won’t type it all up now–it’s probably overwhelming enough for you to digest as it is. But, one thing did come up that’s worth mentioning. Re: A MATCHED DONOR…

R’s brother’s testing came out as a 10/10 donor match, but there’s been some concern about his age. He’ll be 69 this September. Some doctors think it’s better to use a younger donor with younger stem cells…but that’s assuming the younger unrelated donor is also a 10/10 match.

Hutch has been searching for a 10/10 donor match and found ONE worldwide, but that person has not responded to requests for follow-up. Someone might say they are willing to be a stem cell donor but flake out when contacted by a hospital about a patient who needs the cells.

Since the 10/10 donor match has not responded, they did find four 9/10 matches. Only 1 of those responded and sent their blood in for further analysis. Dr Salit says that R’s brother is still in the running to be his donor. The question is: is it better for the patient to have a younger unrelated 9/10 match or a 69-year-old sibling who’s a 10/10? To be decided… We know R’s brother WANTS to do this for R. (Aren’t we fortunate?)

Stay tuned…this thing is heating up.

FACEBOOK POSTS FROM MF PATIENTS WHO’VE GONE THROUGH TRANSPLANT RE: COST

My insurance covered it, but I received the blue cross bill in the mail and it was $958,000.00 and change.

I heard on average it’s a million dollar procedure.

A million! Our insurance covered it but I asked the finance department “what if someone doesn’t have insurance to cover it?!” She told me that they require a large down payment close to $650,000.00!! She said they help guide you to set up fund raisers and such but it’s so sad to hear you have to come up with such a large amount if not insured.

My father’s was well over 2 million. But he had complications/ICU stay and stayed for 3 months straight.

2 million altogether from Duke University Hospital, which includes housing, food, over-the-counter meds, and everything in between. Not cheap.