So I saw Dr. Wittles first and I asked her if I could take a three month break. My lambha light chain count was 109 this month. It has been at the 100 mark for the last 4 months. They think I'm stable at this time and they feel the current treatment is not working to lower it anymore. So what is the next step.
Dr. Schrier did not agree to a three month break. He decided to lower the Decadron dosage from 40mg to 20mg. Also, he decided to decrease the number of weeks on chemo from 3 to 2 per month. Well I would have liked a three month break but I'm thankful for this change. Dr. Schrier said if my numbers start to go up, then everything is back on. He even feels I might have to increase my dosage of Velcade from 2.6 to 3.3 or go on another type of chemo drug called Reviland. I'm not happy about going on Reviland because it has caused or they think it has, heart rejection. Dr. Kevin Anderson had a heart rejection after starting this drug but since he has been on it and is doing quite well. The Mayo Clinic uses this drug and has not had any heart rejections in heart transplant patients with Amyloidosis. It is still alarming and I don't want to take any chances with my new shared heart. So I will have to think about it further. I told Dr. Schrier my concerns and I said I would try the increase in Velcade first. But I hope I can stay stable and ride this out for a few years at this treatment level. Wouldn't that be great!!
Other than all this I'm doing fine. I recently was diagnosed with sleep apea and I am using the CPAP machine each night. Just one more thing!!!! It is helping and I will use it to protect my new shared heart and my other organs. I didn't realize how serious this was. So take it from me if you snore or someone tells you that you stop breathing when you sleep, contact your doctor immediately. This is serious. It can damage your heart, cause a stoke and much more. Please contact your doctor if this describes your symptoms.
This weekend Mom and I are going to Fresno to visit my Godmother, Auntie Babe. Mom hasn't seen her in years and its time to enjoy the moment with her. She is so excited about us coming down. It's her birthday on Sunday and we are going to celebrate with her.
Baby Markie is due April 12th and he is getting bigger each day. Erin is starting to feel things changing and will be going to the doctor on Friday. We will see what the doctor says and when they think Markie will be born. I can't wait for the moment to see my beautiful grandson. It will be a moment that definitely takes my breath away!!!
Update on the headstone. Evelyn spoke to Bras and Mattos and they said they would have the artwork to her next week. They feel the headstone will be complete by next month. I will be so happy to see that beautiful headstone on Jazmin and Jamae's resting place. Those beautiful girls deserved a beautiful headstone. I again thank everyone who donated to help purchase the headstone. I will never forget the love and support everyone gave to us that day.
Have a wonderful weekend. I found this quote and wanted to share with you:
Legends say that hummingbirds float free of time, carrying our hopes for love, joy and celebration.
The hummingbird's delicate grace reminds us that life is rich, beauty is everywhere, every personal connection has meaning and that laughter is life's sweetest creation.
Make moments that take your breath away!
Love,
Debbie
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