Hamilton Regional Multiple Myeloma Support Group
Hamilton, Ontario, Canada

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SPEAKER: Dr. Foley

- there is now an opportunity to live a long time with MM
- a cure may eventually come into play
- now MM is considered a "chronic" disease rather than a "terminal" one
- encouraging - MM = WBC Plasma
- important to fight infection
- many types - fungus, virus, bacteria

- WHITE BLOOD CELL makes anti bodies that are necessary to ones well being
- if ever exposed again - WBC can actively kill it
- anti bodies exist of two things that come together
- Heavy Chain + Light Chain
- Normal = heavy + light ( intact antibody)
- Mutant or MM = antibody with very high level of heavy OR light chains
- not equal parts
- "IGA" or "IGG" or "IGM" - marker of disease consists of these antibodies

- I - a major advancement
- can now test for light chains
- better standard test in hospitals in order to identify things
- milestone in treatments can be the ability to go into Complete Remission
- II - scientists can now take cell and interrogate the "G Note" of the cell
- a very fancy machine allows this in one day; it can rapidly sequence DNA
- WHY - looking for mutations
- winds itself up into a chromosome
- must perfectly divide
- when we are young - DNA repair is possible
- as we get older - repair naturally diminishes
- therefore we are all facing mutations
- it is important to know the profile of mutations
- answers WHY" you have certain mutations and how to treat
- certain therapies do not work
- 414 is a tricky mutation
- part of the road to a cure
- important to know about mutations
- very helpful to MM
III - massive expansion in new therapies
- before - prognosis Not Good
- now - there is more change for MM than in any other disease except CML
- learning how to best put treatments together - very individualized
It is very important that patients in Ontario have access to new drugs

- MM cell wants to divide
- plasma cells continue to divide
- 1950s drugs - conventional chemo drugs
- any cell trying to divide is killed
- 1960s drugs - Melphalan, Cyclophosphamide
- still used as part of the battle today
-bad - cells need blood supply to expand
- drugs will prevent blood supply to cell
- Thalidomide works very well
- problems are the side effects
- neuropathy, numbness, constipation, balance
- side effects will grow over time
- Thalidomide does not have a DIN number
- can cause blood clot
- a lower dose allows for better side effect control

- have come up with Revlamid, son of Thalidomide
- same thing without the neuropathy
- Revlamid may work a bit better than Thalidomide
- side effects include swelling, fatigue
- blood count can get low
- harder on blood counts
- Revlamid needs a helper - Dexamethasone
- Dex is a steroid - more complaints of side effects than Thalidomide or Revlamid
- fluid retention, crazy mood swings, thin bones (osteo)
- can affect blood sugar and can elevate blood pressure
- Dex + Rev = maximum affect
- trying to reach perfect combination with the least side effects for treatment of MM
*once remission is achieved, if you maintain taking Prednisone , the remission will last

- tumor cells are not as strong as one might think
- the cell has to give up something to become a tumor
- cell accumulates garbage - each cell has a garbarator - Prednizone
- MM cell will die if here is a garbage build up
- big problems with Velcade - inconvenient
- neuropathy worse than Thalidomide
- very painful
- may not subside once Velcade is stopped
- IV one to two times per week
- neuropathy is individual to each patient
How do all the drugs work together for a Cure?
A lot of promise and excitement
Advancements coming very rapidly
Something new every six months
- who is eligible
- age is not as important as it was in the past
- fitness and a strong heart are factors
- there is six month investment before you feel "normal" again
-abnormal protein - M Gus - at risk to develop
- MM - holes in bone
- greater than 10% bad cells
- protein in urine
- Stage I or smoldering MM is watched very carefully
- M Gus is watched with treatment
- now - Thalidomide + Dex or Velcade prior to transplant NOT Chemo
- problem - when it comes back you may not be eligible to get it funded
- younger patients harvest enough cells for two transplants (under 60 yrs)

- to achieve complete remission
- I protein undetectable - it is gone
- II bone marrow tests - bad cells gone
- patients - 30 - 40% achieve complete remission
- the rest can get very close
- transplant - not recommended
- a combination of Prednisone & Melphalan instead
- less than 2% achieve remission
- now for non transplant patients VMP Vel + Mel + Pred
- 35% achieve remission - possibly more fragile
- very careful about side effects

-transplant and non transplant
- bone thickening drugs for at least two years for both sets of patients
- holes in the back - Kyroplasty (cementing the spine) is recommended
-maintenance - stay on drugs to stay in remission
- don't want too many side effects
- Revlamid for maintenance seems to be very effective
- list of options available for use when MM comes back
- Drugs - always something new on the horizon

- @ Princess Margaret in Toronto
- convince drug companies that Hamilton is a good place to conduct trials
- 22 million in this area
- this a good way to get access to new drugs

- eventually there will be a list of mutations
- MM now has many different mutations
- not just Myeloma anymore
- there are no set rules
- don't give up - fight the fight
- keep educated - optimistic advancements
Dr. Foley opened the floor to questions and discussion
**Lyraca has been found to be very good for neuropathy.