Tell us about your symptom and treatment experience. Take our survey here.
Blood-Cancer.com Team
Last Updated:
If you have had to stop one line of treatment and try another, why? Please tell us about your treatment journey. How did you cope?
Teece Member
Last Updated:
With my Multiple Myeloma, they started me on Revlimade, after 4 weeks I became allergic to it. So the other part of this first treatment was Velcade. After 6 weeks I became allergic to it. Then my heart capacity dropped to 24 %. They took me off treatment for 3 months so my TOXIFIED (from the chemos) heart could recuperate. This is after 2 years of smoldering myeloma and getting labs done from each arm alternately and also with the chemo infusions. My heart capacity came up to 50% and 3 weeks later I had my "Power Port" put in. I use lidocaine cream on my port and also on my tummy where I get my Precreate Shot. My Myeloma became active from Smoldering in 2020, I had blood draws from my arms until I decided on a Port in Jan of last year. (I had a port in 2007 when I had triple negative breast cancer). Getting the Port was the smartest decision I made !! After the Velcade, they put me on Krypolis and Gamagard. My body is okay with this.
As far as coping, reality acknowledgement is necessary, just as it should be. But I have always been a realist. I quilt, I read. I bemoan the fact that my lower back hurts so bad. I bemoan the fact that I have neuropathy in my feet and toes, and in my fingers. I am anemic, I have had 7 iron transfusions during Oct, Nov, and Dec of last year. Plus 3 Blood transfusions during that time. ENERGY is NON-EXISTANT so I haven't quilted in a while. But as far as interacting with my family and friends, no problem. My best friend took me aside and asked me "How can you be so happy knowing what you have?" I told her"I am happy and grateful for each day that God lets me wake up." She just shook her head. BUT it's true ! Being grateful and acknowledging living, shuting out the petty dramas and such, is what life should be.........because it is what it is.
Dennis Golden Member
Last Updated:
Teece Member
Last Updated:
I totally understand. I never realized how much insignificant drama goes on in our lives on a daily basis. It just isn’t worth the attention let alone the effort to de-escalate the situation. I just can’t seem to get this across to some members of my family.
So I back off from getting involved in a lot of the conversations. Yet , even though there are usually 3 or 4 people in the room and they are talking between themselves, they will say something without saying my name, and expect me to account for what they said to me, even though I am busy doing something else. It drives me crazy. But at least they are trying to include me.
Life is to be enjoyed now. Not being made miserable by others. They may be heading for a family “round table meeting “ if some things don’t change soon. They won’t like what “I” put on the table in front of them! I guess I just need to clear the air.
Maybe they just don’t understand that I can’t handle stress anymore. Ur daughter is presenting me with articles about cancer that has been cured holistically. But multiple myeloma is not mentioned in any of them. Bless her heart, she’s trying.
I only had the shot and lab work today. So other than the headache, I feel ok. My count did drop from the 9.7 of last Friday to 8.8 today. They are ordering me some more iron to be infused next Friday, along with my Krypolis. I expect another blood transfusion in the next few weeks. Not a biggie because it does make me feel better !!!
Angie Netterville Member
Last Updated:
Angie (Team Member)
Yolanda Brunson-Sarrabo Member
Last Updated:
Yolanda (Team Member)
Teece Member
Last Updated:
That should have said “ our daughter “
CommunityMember01e6aa Member
Last Updated:
I am still on my first line of treatment, which seems to be wait and see. Maybe because of my age at 82 years old. These labs are getting a thorough search every 6 weeks by my primary care physician. No referrals yet to oncology. Very slow process??
Angie Netterville Member
Last Updated:
Angie (Team Member)