I sincerely thank everyone for their thoughts and comments I see the specialist on the 14th for the first time and my regular oncologist four days later when I should start infusions I have not made up my mind yet but I will definitely speak with the new specialist. Quality of life is extremely important to me once again thanks everybody I do appreciate it

I honestly felt better now than I did before my treatments. I wasn't healthy but didn't know why until diagnosis. Everyone is different however during treatment I followed suggestions from people on this site and got a long well. It's so hard because the list of side effects is daunting but everyone is different and people don't have the same side effects and some have very few side effects. I was lucky my side effects were more tiredness and such that I could work around. I had a SCT and had a partial remission and I honestly feel I'm a healthier me now than at the beginning of my journey. I'll be praying you make the decision that's right for you.

Carolyn, such a great question. I was ready to throw in the towel in 2017. Two bouts of pneumonia, sepsis, and they couldn't get my myeloma under control. My friends that are hospice nurses actually came to my house. I didn't think a transplant would work cause the other treatments hadn't so far. But I did get a very good partial response to transplant. I'm doing pretty well on Pomalyst and Darzalex. I hear where you are coming from. My doctor tells me everyone relapses at some point. Though we have lots if treatments the side effects are daunting. You might want to have a discussion with your doctor about quality of life. Do we really need the myeloma eradicated or can we just get treatment to keep it controlled with less side effects? We are all different. I was diagnosed at 57. I hope to live to see a cure. Hugs your way 💕🙏🥰

Hi Carolyn, I empathize with your feelings. It is a difficult decision and unique to each person’s situation. It is also a common struggle for every human - we all die at some point. I hope that doesnt sound grim, just trying to put some boundary around what we are actually capable of achieving. I love life and have a strong faith in Christ which I cannot discount as influencing my perspective. I have gone through with treatments since being diagnosed december 2019. I have been lucky. I am retired so i didnt have to push through work while also getting treatment. I am fortunate to being in somewhat of remission according to my ‘m protein’ but have recently had radiation for a single lesion on my spine, even though my m-protein is zero. The radiation to my neck area has fuddled up my thyroid and now i am seeking help for that (more doc visits and more meds). So, i should be pro treatment but i often think of letting nature (and cancer) take its course and see what happens. I recommend taking one step at a time, and remember you can stop whenever you want. A book I stumbled upon helped me gain some insight “ Being Mortal’ by Atul Gawand.
It is ok to decide not to go through treatment, but not an easy decision and very serious. In the book i referenced, the author poses two questions to help frame your choices 1. What do you fear the most? and 2. What do you hope for the most? If you can continue treatment and grow towards those two answers, i would keep getting treatment. If not, it may be better to take your chances.
Sorry for my very long opinionated answer. I think your question struck a chord with me. I hope you get some more answers/ thoughts to your question from other members!