[johanna]

FLC going up 7 cycles on chemo & finished. stable plateau ?

by johanna on Thu Apr 04, 2013 3:07 pm

My friend Ian and I saw the oncologist yesterday.
after 7 cycles of chemo , CTD regimen the sFLC are still going up
the oncologist said if FLC are still going down and responding he will have Ian on cycle 8
that did not happen

yesterday we received the worst possible news i would say.
he said Ian reached the plateau and he is looking at SCT at end of may.
that is 2 months ahead, in the mean while he sent us home with no medication.
sFLC showed 588 k FLC mg / L 13 march 2013
878 k FLC mg / L 20 march 2013
in my opinion that is not stable plateau, the myeloma is still growing , Ian stopped responding to chemo and Myeloma is still on the move.
doc explination was that there is 4 % (ish) error in the FLC test , and tried to comfort us
which was not the case before, when the marker was going down
since he is on standart treatment he will get SCT and no maintenace.
he is willing to do BMB for FISH test to see if he is high risk patient.

should mention that between octomber and november 2012 there was a
9200 k FLC mg/Ldrop . very dramatic drop (highest FLC was 13056 mg / L)
in my oppinion such a dramatic drop of FLC in 1 MONTH suggests very aggresive myeloma.

also there is 95 % reduction in sFLC where does that go ?
PR or VGPR ?

any advice , please on what we should do further on.

[Ron Harvot]

Re: FLC going up 7 cycles on chemo & finished. stable platea

by Ron Harvot on Thu Apr 04, 2013 3:18 pm

Usually before a SCT is done there is an agressive induction therapy that tries to get the multiple myeloma to as low a level as is possible. You mentioned CTD as what he was on. Usually in the States they use Velcade Revlimid and Dex or VRD as induction. Then the stem cells are harvested and following that massive Chemo primarily featuring Melphalan (spelling) is used to kill the bone marrow with the harvested cells then being reintroduced. The key is getting the multiple myeloma into as low a position as is possible before harvesting the stem cells.

Given the above, sending Ian home without medication does not make sense to me. Is it possible for you to get another opinion?

Ron

[Nancy Shamanna]

Re: FLC going up 7 cycles on chemo & finished. stable platea

by Nancy Shamanna on Thu Apr 04, 2013 3:32 pm

Hi Johanna, I can see why you are worried but can't myself interpret any test results, not being a doctor! I would think that it would be important to get the FISH testing done to see if Ian has any chromosomal abnormalities that might effect a decision to have an SCT.
oNE thought is that you might look into clinical trials being done in the UK also! That might give you a few more choices too.
Best wishes!
Is Velcade/Revlimid not approved for newly diagnosed patients in your area?