This week’s question is about how involved you are in decisions about your myeloma treatment.
A few clarifications:
First, this poll is for people with multiple myeloma or a myeloma-related condition in which treatment is required or has been seriously considered. Caregivers and family members of myeloma patients are welcome to answer on their behalf.
In the question, you should interpret "physician" to be the main physician -- or group of physicians -- you work with in regard to your myeloma.
Also, when the word "I" is used in the question, feel free to interpret it as "I and my family" or "I and my husband/wife".
The goal of the question is to shed light on how much decisions are developed and made primarily by physicians, and how much they are developed and made by yourself and your family.
Please answer the question above, and then feel free to add whatever comments you feel might be relevant or helpful in the discussion below.
We previously ran this poll before, but are running it again so that Beacon readers have access to the latest information and can compare it to the previous data:
https://myelomabeacon.org/forum/weekly-poll-your-involvement-in-treatment-decisions-t609.html
Forums
4 posts
• Page 1 of 1
Re: Weekly Poll - Your Involvement In Treatment Decisions -
My Oncologist is not a multiple myeloma expert and over the past 2 years I have learned plenty about my cancer and treatment options. In 2 instances I had to insist on a ASCT and maintenance therapy with Revlimid after the transplant. I made these decisions based on all my research on multiple myeloma. Most multiple myeloma patients don't have a multiple myeloma expert as their oncologist, therefore it is very important that you be your own advocate.
-
GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Weekly Poll - Your Involvement In Treatment Decisions -
I haven't voted because who makes the decisions has changed during the course of my multiple myeloma journey and probably will still change (depending on the circumstance). Initially treatment was the doctors decisions - I knew nothing about multiple myeloma and I was probably in shock. Then when my multiple myeloma specialists disagreed about my next treatment it was my husbands and my decision to go ahead with one of their suggestions. Lately some of the decisions made are mine alone. With some of my medication (eg prednisolone) I have adjusted the level I am taking or increased the time I took a specific dose for prior to letting the specialist know. In one instance I increased my daily prednisolone dose as I felt my chronic GVHD would have "less of a hold on me". With the increased dose I experienced greater range of motion (and therefore a better QOL). I then discussed how long I should remain on this dose with my specialist.
I do not advocate changing medication without discussing it with a medico first. However I am happy with my decision to change the dose I was taking. My specialist had suggested a certain dose and I thought that was too high and said as much. We agreed on a lower dose. After living with the chronic GVHD (on the fascia of my muscles) for a couple of months and feeling its restriction I was very aware of release when I started the pred. When I noticed that the amount of release (increase in my movement) had slowed down I increased the pred dose. At present my pred dose is decreasing (discussed with specialist) and I (along with others) are watching my range of motion like a hawk.
I do not advocate changing medication without discussing it with a medico first. However I am happy with my decision to change the dose I was taking. My specialist had suggested a certain dose and I thought that was too high and said as much. We agreed on a lower dose. After living with the chronic GVHD (on the fascia of my muscles) for a couple of months and feeling its restriction I was very aware of release when I started the pred. When I noticed that the amount of release (increase in my movement) had slowed down I increased the pred dose. At present my pred dose is decreasing (discussed with specialist) and I (along with others) are watching my range of motion like a hawk.
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Weekly Poll - Your Involvement In Treatment Decisions -
I was diagnosed in February 2013 due to back problems. I researched multiple myeloma and came to the conclusion that I would start with using the recommendations of my Doctor a multiple myeloma Specialist at Evergreen Hospital Kirkland. 
I made several changes that were not suggested by DR. One was when I took the Revlimid which one of the side effects was the lethargy and fatigue. Since I was going to have this anyway I decided to take the medication at night which increased my quality of life during the day. I also made the decision to take the steroid (Dexamethasone) twice a week v once a week to increase the time that I have felt good and allowed me to play some limited golf which also increased my quality of life.
I'm 69 and looking at the stats on stem cell I chosen to wait as the benefit vs. the additional complications on life style have been placed on hold as for moving forward with that treatment option.
I appear to be responding to the treatment and will consider going on a lower dosage or modified treatment which is under advisement and discussion with my DR and my research.
Not knowing the future has put many decisions on hold due to cost and uncertainty of effects on care giver has limited many decisions.
I made several changes that were not suggested by DR. One was when I took the Revlimid which one of the side effects was the lethargy and fatigue. Since I was going to have this anyway I decided to take the medication at night which increased my quality of life during the day. I also made the decision to take the steroid (Dexamethasone) twice a week v once a week to increase the time that I have felt good and allowed me to play some limited golf which also increased my quality of life.
I'm 69 and looking at the stats on stem cell I chosen to wait as the benefit vs. the additional complications on life style have been placed on hold as for moving forward with that treatment option.
I appear to be responding to the treatment and will consider going on a lower dosage or modified treatment which is under advisement and discussion with my DR and my research.
Not knowing the future has put many decisions on hold due to cost and uncertainty of effects on care giver has limited many decisions.
-
RA Koester
4 posts
• Page 1 of 1