Hi Wmljames

Great to hear that radiation helped so much for you.
I know that radiation can be very curative and very quickly.
In difficult cases, radiation can provide very fast and permanent relief that chemo may fail to provide.

This just speaks to how everyone’s MM, treatment Meds, an individual’s response are so significantly different.

During my first treatment, two years ago, after getting a Kyphoplasty on my L4 that completely fixed my fractured L4, I had a Radiation Doc want to do radiation on my L4 when it was already fixed and had no need for that treatment. After some research I figured out it wasn’t needed. It was quite hard to get that Radiation Doc to back off. Fortunately everything about my treatment is always my choice. A year later, my follow up PET confirmed my L4 is perfectly fine and that the Radiation I was being told I must get was never needed.

I’m always looking over my shoulder to avoid what I consider being over medicated.

I’ve been far more right than wrong and I’ve been very fortunate that things have worked out for me the way they have but I’m sure I’m a situation of One - not likely to be replicated in another.

I greatly appreciate hearing what others have done. It helps with choices I’m constantly having to consider. MM is a forever part of our lives.

Larry,
I had two types or radiation to destroy cancerous hot spots that weren't responding like other parts on my body, i.e. sternum and T11-L1 spine. Treatment plans were curative in nature, not just palliative, and after 10 straight days of treatment, within a week or two, the previous bone pain was gone. Without the radiation, I couldn't have moved on to a planned stem cell transplant without more chemo.

In the future, I won't be afraid to boost the cancer attack of chemo with radiation.

I am on day+9 of my stem cell transplant and doing as well as expected. I do wonder what maintenance plan I will be put on in about 3 months. I am going to push for more aggressive maint because I don't respond as quickly as some others (maybe pomalyst/velcade/dex like Joan mentions).

Yes, Revlimid is a tough drug to take. But! I was a chemo nurse when they didn't have Revlimid. Patients were given Adriamycin, Vincristine and high dose dex. Compared to them Revlimid looks very mild. Just saying. I was in a panic when I was diagnosed. I told the doctor that's the cancer they give VAD for and every one dies. He said no, we don't give those drugs anymore. Hoping new and better drugs come along.

My wife is in remission and quality of life is nearly normal, except for getting a little tired more easily. On Revlimid, since SCT in Feb. of ‘21. I am skeptical of some of the other treatments AND of Revlimid, but she is doing so well, I hate to encourage her to change. We, my wife and I, and our medical team keep a close eye on things. Monthly blood tests and monthly infusion of Zometa. So in the meantime we are doing the best we can, and all we can. Good luck to you and to all on this journey.

Usually insurance won't pay for Pomalyst except for relapse. A few people on here had a bad reaction to Revlimid and are doing well on Pomalyst. I have been on Pomalyst since before my transplant started October 2017. Started 4mg. I'm now on 2mg. My myeloma went from over 95% myeloma cells to around 20% after RVD induction. My regular oncologist thought that was pretty good. But my Specialist switched me to Kyprolis Pomalyst and dexamethasone. My m spike doubled in a month. I was so upset. Wish I had if stayed on RVD for longer. But I assumed he knew best. Then, I had high dose Cytoxan to get ready for transplant. Got sepsis and 2 weeks in the hospital. 2 weeks after that I started Pomalyst 4mg, Darzalex and Prednisone. Had a transplant about 6 weeks later. Had to start the Darzalex schedule all over again 78 days after transplant, with Pomalyst 2mg and dexamethasone. Short answer is I would stay on Revlimid for as long as its working well for you. Save Pomalyst for later if you need it. There are treatments, but not that many oral ones. At least Revlimid is a convenient way to take maintenance.