It sounds like you have had quite a difficult road already but I appreciate that you are advocating for yourself and that you are not taking no for an answer. Well done. I’ve found that there are as many different views on MM as there are doctors (even within the same offices). So frustrating. You might look into going to the ASH conference in December. I believe it’s in San Diego. One of my doctors asked if I was going so I assume that patients can go as well as doctors. Keep asking a ton of questions. I hope you find a doctor who really listens to you. Keep looking for answers. I’m all about knowledge is power especially when you have cancer and have so little control over what comes next.

Carrie,
I’m on my 4th Oncologist. The first could not explain MM to me. The second would not do another bone marrow biopsy, even though the first one was so small a sample it couldn’t be accurate. The third was getting forgetful. The fourth is at UCLA, smart, typical doctor who doesn’t answer questions in non-doctor language. I just keep going back and asking until I understand. She did say there is no high risk in SMM only in MM. That’s her opinion, not what I read. If I run out of doctors in my area, I can always drive to San Diego (2 hours), but I also have City of Hope. They are building a new hospital near me. I went there for a second opinion. Whoops, I guess that makes 5 doctors. City of Hope will not take me until I have MM. That does not make sense to me. I saw her when I had MGUS. I agree that it is difficult to find others with t(14;16). The studies have noted that many with t(14;16) come in too late in the stage for trials. Paula 🌹

Hang in there. My best advice is to exercise every day, if possible. I walk my dog about 40 minutes if nothing else, to clear my head. Find the best MM oncologist that you can. I travel 5 hours each way, every other week, for treatment. I even switched doctors within the same cancer center after a year. You are your best advocate. Don’t be afraid to get a 2nd opinion if for no other reason to reassure you that you are in the right place with the right doctor. As I heard 1 MM specialist say, the joke among MM doctors is” if you ask 2 MM doctors how to treat a patient you will get 3 answers “ Every doctor is different, every patient is different.
There is a lot of focus these days on high risk smoldering patients, like you, to try to stop the disease from progressing. There are lots of new drugs coming out almost monthly. I don’t know if it’s unusual but I’m on a 3 drug combination that I’ve been on since day 1. I think because it has been so effective. When I relapse I am certain that I have lots of options such as Bispecifics, Car-T cell therapy, another drug combination, trials and possibly another transplant (they froze 1/2 my stem cells from the original retrieval).
I keep a notebook with doctors names and dates and procedures, etc. There is a lot to try to remember.
I’ve found it very difficult to find other people with similar diagnosis as me undergoing the same treatment. I’m sure they are out there but they don’t seem to be very vocal.
I wish you all the best. Any cancer diagnosis is difficult to hear and process. Stay strong!🤗

Carrie,
How are you doing? Are you still on the same treatment? My Mom stopped driving all the way to Seattle and her MM Oncologist worked with the local hospital to give her the infusions. Is that possible for you, so you don't have to drive 5 hours? Also, I really appreciate you sharing what kind of treatment that you are on. It's hard to find any information on how to treat t(14;16), much less all the other deletions and additions that I have. It turns out I do not have del 17, which is good news.
Paula🌹

Carrie,
From what I have read, your body will stop responding at some point, so then they change to another drug. They may go back to what you are originally taking later. We all respond differently and so they take their cue from your responses. Thank you for answering my question. I have always wondered what drug they would give me. I have deletion 16q, Monosomy 13 and 17q
Paula