Hi Imy, I had some challenges the first year. I didn't have a great response to RVD. My numbers doubled on Kyprolis, Pomalyst and dexamethasone. So it sometimes take awhile to find the right treatment. Make sure you have a doctor that only sees myeloma patients. They should be doing MRD testing on your bone marrow even though it's positive, so they can map changes in your myeloma over time. Do you have any high risk genetics? Hopefully that nurse was just asking routine questions about you living will and POA. They do like to have a copy scanned in to their file. But it doesn't sound like the most tactful time to be asking. Why were you off chemo for a month? I was off chemo for a month due to sepsis after high dose Cytoxan. After collecting for a stem cell transplant, they started me on Darzalex, Pomalyst 4 mg and Prednisone. That finally started working. I was able to have a transplant in December. I have a very good partial response to transplant. I'm still in a very good partial response. Still on Darzalex and Pomalyst. So hang in there. They will find the right treatment combination for you. Sending hugs and prayers 💕🙏🥰

Imy,
Other than funeral plans, the Power of Attorney is the most important, because it allows your daughter to speak for you and make sure your wishes as to health care decisions are made by her and not someone you don’t know. It helps prevent delays in treatment also. My mother’s hospital had all her children’s name on file and her Do Not Resuscitate order. Hospice will need it too. Did you know most people are on Hospice 1 week on average? My mom was on Hospice for 6 months and it made the best difference in her quality of life. She was scared to call them, and once she had them was so grateful for their help.
Paula🌹

We chose cremation also. Prepaid so no burden on kids.

Imy,
I have a Living Will with Power of Attorney. It comforts me to know, the people I trust will be taking care of things when I can’t. I’m 65 and got it 20 years ago. This week I plan to go to the Mortuary and pick out what I want. It’s hard on family when they have to do it at the last minute and agree. I won’t pay for anything, but I will make choices. I’m also going to pick out the Readings for my Funeral Mass. I plan on making a folder with phone numbers and addresses of people I want invited. When my Mom died in January of this year, I had to dig through lots of books and papers to find names and numbers. I’m just trying to make it easy and get the funeral I want. My mom asked for a Lilac casket. If it was up to my Dad she would have been buried in dark Walnut. At least we know what he wants. He’ll be 92 this month. I hope this helps.
Paula🌹

Hi Donna,

I'm so very sorry! They told me they stopped the Velcade, Dexamethasone & Revlimid to give my body a chance to recover as I was having diarrhea 3 to 4 times a day. Even with prescription meds it didn't stop. Until a couple of weeks off & after taking me off Acyclovir.

My Oncologist is an MM doctor.

Asking for the POA & other paperwork really scared me tho....

I'll be hanging!!!