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Rationale for Hunstman imaging & BMB policy change?

by DougC on Wed Jul 23, 2014 9:36 am

I will say up front, I haven't had the opportunity to speak with the doctor about my concerns, but will have my chance August 20.

The Huntsman myeloma clinic has decided to stop requesting / requiring imaging and bone marrow biopsies for monitoring patients. This is a new change. As recent as January 2014, they required a PET/CT or MRI and bone marrow biopsy once every 6 months. The patient coordinator said they will only track patients using serum and urine unless something indicates a need for imaging.

Why? I'm trying to figure this out. It could be the Huntsman is trying to gain efficiency be reducing scheduling on the valuable imaging devices; reducing the doctor's in clinic workload; or appeasing the insurance companies.

Or, is this more about philosophy? I know the past frequent use of imaging was put in place by Dr. Tricot. Once he left, Dr. Zangari continued. Both know that imaging often detects relapse before serum and/or urine. And their philosophy is, the sooner you catch relapse and begin treatment, the more likely you are to achieve a similar remission as the first. However, the new doctors are far less aggressive and believe they treat when the relapse becomes symptomatic. I have been in CR for 6.5 years. However, my fellow patients have never achieved a CR and yet they're not receiving imaging or biopsies because they're stable.

I will likely leave the Huntsman after being treated there since November 2007. I've known too many patients who weren't monitored with imaging and bone marrow biopsy only to discover their relapse after a bone breaks. Several fellow patients have left already. To call the Huntsman myeloma clinic a clinic that specializes in treating myeloma is misleading. They're simply a large general oncology office now. No studies, no advanced genetic testing, no core treatment schema, nothing unique or state of the art. Very sad.

Again, I have been in CR since January 2008. I initially presented with extensive bone involvement. No doubt in my mind relapse will present in the bone marrow before the serum and/or urine. I've never had an M-spike.

So back to my question, what could possibly be the rational for the decision to stop monitoring patients using imaging and bone marrow biopsy?

DougC

Re: Rationale for Hunstman imaging & BMB policy change?

by Nancy Shamanna on Wed Jul 23, 2014 10:01 am

Positron emission tomography (excerpts from Wikipedia article)

Safety
PET scanning is non-invasive, but it does involve exposure to ionizing radiation.

18F-FDG, which is now the standard radiotracer used for PET neuroimaging and cancer patient management,[39] has an effective radiation dose of 14 mSv.[22]

The amount of radiation in 18F-FDG is similar to the effective dose of spending one year in Denver, CO (12.4 mSv/year).[40] For comparison, radiation dosage for other medical procedures range from 0.02 mSv for a chest x-ray and 6.5–8 mSv for a CT scan of the chest.[41][42] Average civil aircrews are exposed to 3 mSv/year,[43] and the whole body occupational dose limit for Nuclear Energy Workers in the USA is 50mSv/year.[44] For scale, see Orders of magnitude (radiation).

For PET-CT scanning, the radiation exposure may be substantial—around 23–26 mSv (for a 70 kg person—dose is likely to be higher for higher body weights).[45]

Cost per scan
As of August 2008, Cancer Care Ontario reports that the current average incremental cost to perform a PET scan in the province is $1,000–$1,200 per scan. This includes the cost of the radiopharmaceutical and a stipend for the physician reading the scan.[46]

Hi Doug, I suppose that part of the reason why PET scans will not be done for monitoring patients every six months could be that the amount of radiation that the patient is exposed to is higher than that for X-rays. As we patients are fortunate to live longer than before, perhaps a PET scan twice a year is a lot of radiation. I haven't had one of those scans myself (yet!).

Another reason of course would be cost of the scan. X-rays are much cheaper. But I did think that PET scans are used to monitor patients with no M spike, as well as the sFLC's of course (serum test). So perhaps you would still be monitored that way.

I think that imaging is an interesting topic and probably the International Myeloma Working Group will come out in favour of patients getting MRI's as well as skeletal surveys.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Rationale for Hunstman imaging & BMB policy change?

by DougC on Wed Jul 23, 2014 1:37 pm

Thank you Nancy. To clear up the scheduling, they "used" to alternate MRI with PET/CT. Meaning, only one PET/CT per 12 months and one MRI per 12 months. It results in on or the other each 6 months. They also conducted a bone marrow biopsy every six months. Now, nothing unless the serum or urine indicates a need.

Plenty of studies show relapse often presents itself in the same place as an original focal lesion. Why have a fine needle biopsy of a focal lesion if not to confirm active myeloma not detected in the serum or urine? For patients who initially presented with bone involvement, it makes ZERO sense to me why a doctor would chose not to monitor and track patients with imaging and bone marrow biopsy. Unless, his philosophy is to only treat myeloma that meets CRAB criteria. In that case, early detection means little. He simply waits for progression that causes symptoms.

There are studies that show early intervention at relapse of patients who experienced a deep strong initial remission, can result in an equally deep second remission. I just don't understand why they wouldn't use all tools to combat a disease they feel they can't cure and will relapse.

Thank you

DougC

Re: Rationale for Hunstman imaging & BMB policy change?

by dnalex on Wed Jul 23, 2014 2:33 pm

Hi Doug,

Firstly, I wanted to say that it's fantastic to read that you have been in CR for that long, and my best wishes that the CR will hold indefinitely. :D

I agree with you that at least to a non-medical person, it doesn't make any sense to discontinue both PET and MRI. I can see PET being removed to a need-only basis, if ionizing radiation exposure is a concern. However, that is not true with MRI. So, I don't know why they do that. I am curious as to what the answer you will get from them.

dnalex
Name: Alex N.
Who do you know with myeloma?: mother
When were you/they diagnosed?: 2007
Age at diagnosis: 56


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