[Dr. Peter Voorhees]

Re: Doctors say father's myeloma is untreatable

by Dr. Peter Voorhees on Fri Oct 10, 2014 1:05 pm

Dear Bryan,

I am so sorry to hear about your father's situation.

As others have mentioned in this thread, myeloma, even bad myeloma, can respond to treatment and improve symptoms related to the disease. On the other hand, if your father opted to receive therapy, it would be a tough course with dialysis involved, frequent visits back and forth to the hematologist-oncologist, potential side effects of treatment, etc. Certainly, we must consider quality of life as well as quantity of life when making these difficult decisions.

I am not sure that this forum is an ideal place to get treatment advice given the complexity of the situation. I agree that a myeloma specialist is the right way to go if treatment is being considered, although it sounds like you may have already done this.

Regardless of the ultimate decision, we wish you and your family, in particular your father, well.

Best regards,

Pete V.

[Sharon hardy]

Re: Doctors say father's myeloma is untreatable

by Sharon hardy on Thu Oct 16, 2014 2:46 pm

When I was first diagnosed, my doctor (oncologist / hematologist) actually sent me home and told me to make a bucket list. I was terminal. I went looking for a specialist. I found one, but he was out of state. I drove back and forth to the specialist for almost a year. I found the local cancer center here in town had hired a new doctor who was well familiar with multiple myeloma and began seeing her. Now it's been 16 months since my initial diagnosis.

I am stage 3 and about to have a port installed tomorrow. I'm still here. I'm still alive. Get second, thirds or heck even 4th opinions. This is a rare disease and I happen to have a rare strain of it. Every time I go to the ER I have to explain to the docs what it is and how it works.

Educate yourself. Educate those around you. Learn the right questions to ask and when it's ok to accept the answer.

[Rneb]

Re: Doctors say father's myeloma is untreatable

by Rneb on Thu Oct 16, 2014 7:22 pm

BigRedBear:

You sound exhausted.

Take care of yourself.

[powerdrivehp]

Re: Doctors say father's myeloma is untreatable

by powerdrivehp on Fri Oct 17, 2014 7:24 am

No, for every opinion there is another opinion. Don't give up! Get him the treatment.

When I was in pain, they gave me a PICC line with these two medicines:

Ertapenem (Invanz) 1 g/ns 100 ml eclipse: infuse 1 g intravenously over 30 minutes every 24 hours via eclipse, as directed for infection.

Daptomycin (Cubicin) 600 mg/ns 100 ml intermate: infuse 600 mg intravenously over 30 minutes every 24 hours for 6 weeks.

I did this myself at home. Afterwards, the pain subsided and I was able to swim and walk normally again.

He is not exactly an old man - still young at 79. Deserves to be treated. It's part of the American Dream. Get the treatment, therefore, there will be no doubts – I should have, I could have, etc.

You might want to get this book by Charles Capps, "The Tongue - A Creative Force," and read it out loud. Win with the spirit and win with your actions.