[Pootren]

Spoke to Dad's oncologist

by Pootren on Mon Aug 18, 2014 7:00 pm

Thanks for all the advice/info everyone on my recent posts regarding my dad.

I spoke to his oncologist today and he gave me a more 'clear' understanding of all the tests etc. He is considered 'low risk' despite having multiple lesions.The concern is mainly how he responds to treatment (neuropathy and other health issues unrelated to multiple myeloma). He has a very low M-spike but it's hard to monitor, as many of you indicated, with such low level plasma cells.

He is waiting for the results of the other test to see if he has a more 'aggressive' type (based on chromosome markers) but because his plasma cells only comprise 3 percent, we may not know. He did mention he had elevated IgA.

He is starting chemo next week and will have one more round of dex this week.The oncologist is also sending him to see a specialist about whether he will be a candidate for stem cell replacement. His doctor seems 'on it' so we are happy.

He sounded optimistic but, again, its all reliant on his treatment. Due to the difficulty of 'tracking' this type of myeloma, he is going to test often and treat aggressively.

Definitely feel less 'confused ' now

[Multibilly]

Re: Spoke to Dad's oncologist

by Multibilly on Mon Aug 18, 2014 7:21 pm

Pootren,

I hate to add any uncertainty to your situation.

But....you might want to consider talking to a multiple myeloma specialist before starting any chemo. The choice of the specific drugs in an overall chemo plan is an important one which a multiple myeloma specialist is best suited to make. Note also that the FISH results that will give you a summary of any cytogenetic anomalies (as you would say, the "chromosome markers") will have a bearing on which drugs might work best in your Dad's particular situation.

As an example of how chromosome markers affect drug choice, see that Mayo's guidelines below (this is not to say that the Mayo's guidelines are the bible for multiple myeloma treatment, but this will give you an idea of how one institution uses "chromosome markers" to help them choose a particular drug):

http://www.msmart.org/newly%20diagnosed%20myeloma.pdf

It just seems a little backwards to be starting with chemo before having any FISH results or figuring out if you want a transplant or not.

Anyway, just my two cents. Again, I apologize if I'm adding any confusion to this situation, or if I'm misunderstanding the order in which things are being done here.

[Pootren]

Re: Spoke to Dad's oncologist

by Pootren on Mon Aug 18, 2014 8:10 pm

Thanks for the advice.The doctor did note that his particular case is a bit harder to track. but he's had cases like this before. He wants to work on shrinking the tumors, especially the one in his brain which is causing symptoms, which is why he is starting chemo right away.

The 'markers' may not ever be known as plasma cells are needed and he has only 3 percent. He is on a specific medication that stopped them from doing another sort of biopsy that would gather more info. Apparently, his case is a bit 'unusual' but not unheard of.

This doctor is not a myeloma specialist, but he is held in high regard here. He will be seeing a specialist (a colleague he works closely with) in the next few weeks. He feels it's necessary to start treatment immediately due to the location of the tumours and the effect they are having on his health at this moment.

The biggest issue is the neuropathy. He may have to stop it down the road. My dad has it now, but it could become crippling, so they are going to keep a close eye on it.

[Multibilly]

Re: Spoke to Dad's oncologist

by Multibilly on Tue Aug 19, 2014 8:07 am

Pootren,

Are you saying that the lytic lesion(s) on his skull that are due to multiple myeloma are causing issues with your Dad's brain?

[Rneb]

Re: Spoke to Dad's oncologist

by Rneb on Tue Aug 19, 2014 6:55 pm

Multi-Bill:

A Lytic lesion is an abnormal growth, bound up in Bone. Part of the Osteoclast/ Osteoblast bone replenishing/ re-contouring process--interrupted and gone awry. Often circular appearing on Plain x-rays, after atleast 30 % of the bone's density is compromised. CT, MRI,PET scans will have differing definition.

Plasmacytomas can develop anywhere-- approximately 80 % are "aero-digestive" and the Skull / Sinus cavities/ Mandible-Maxilla, Brain/ Occular regions...are most prominent. They are often made up of large agglutinations of Proteins and assorted tissues,etc. They can be adjacent to Bone lesions.

Thus, He likely has BOTH Lytic lesions (Skull) AND a Plasmacytoma / Mixed tumor in the Brain, itself. Not a good situation. Need to shrink the tumor in the Brain--STAT.
Hence, Chemo is started in earnest...before any multiple myeloma / FISH workup is completed.

The Lytic lesion(s) is the least worry at present.

[Multibilly]

Re: Spoke to Dad's oncologist

by Multibilly on Tue Aug 19, 2014 7:01 pm

Rneb,

I can appreciate that fact and did not realize from Pootren's earlier posts that this was going on ... and hence the urgency.

[Pootren]

Re: Spoke to Dad's oncologist

by Pootren on Wed Aug 20, 2014 6:56 pm

Yes the one on his skull is a plasmacytoma and is causing some issues and pain as well. Needs to be dealt with immediately. His oncologist seems quite knowledgeable on multiple myeloma so I feel like he is in good hands.

[Toni]

Re: Spoke to Dad's oncologist

by Toni on Wed Aug 20, 2014 7:08 pm

Pootren - Good, glad to hear you feel comfortable with your dad's oncologist and you feel confident he's quite knowledgeable. I think the hardest thing when one of our loved ones are sick is if you don't have a good partnership with the medical team. It makes it very stressful.

It sounds like you've learned a lot too through this process. It's always good to ask questions and keep pursuing until you have a good comfort level,

Do keep us posted on your dad's progress.