Pat’s Place: Give Radiation Therapy A Chance
I relapsed six or seven months ago. That fact was made painfully clear when I broke a rib getting into my wife’s car; several new lesions had weakened the ribs on my right side.
I assumed the acute pain was caused by the fracture. While I’m sure the break contributed to my discomfort, it turns out that one of the lesions was pressing on a nerve that runs along the underside of my rib cage. My medical oncologist immediately consulted with my radiation oncologist. I started radiation therapy the next day.
My pain began to improve after three sessions. Much to the frustration of the doctor, my insurance would only approve ten visits. But that’s all it took. The pain was practically gone by then; after another week, it had disappeared entirely.
That was my third experience with radiation therapy. Each worked remarkably well.
For multiple myeloma patients, radiation therapy is considered to be palliative care. In other words, while it may help reduce acute pain, it isn’t necessarily going to knock a patient’s monoclonal protein numbers down, or help us live longer.
Once considered to be innovative and cutting edge, my impression is that radiation therapy isn’t taken very seriously these days. But I think that’s a mistake.
As I mentioned earlier, I have responded remarkably well to radiation. So much so that when my latest PET scan confirmed the pain along my belt line was caused by active lesions in both hip bones, I suggested we try radiation.
Having recently moved to a small town in northeastern Florida, my new medical oncologist here was more than happy to refer me to the local radiation oncology practice. It took a week for them to get my medical records and a treatment plan together. But once treatment started, the pain started to subside almost immediately.
This past Monday, I completed my tenth and last session. The pain in my left hip is gone. It has improved in my right hip, although that hip is still sore. Like with my ribs, I’ve been told that radiation continues to do its thing for another couple of weeks. And if the pain hasn’t improved enough by then, my doctor said he could radiate the right hip five more times if necessary.
There are a few limitations to radiation therapy. Plasmacytomas or lesions located close to vital organs may not be safe targets to radiate. Additionally, radiation oncologists don’t like to radiate the same spot more than once, even years apart. When I asked about that, I was told that repeated exposure could destroy the bone’s ability to repair itself. “We don’t want to kill the bone,” my radiation oncologist explained.
Hard to argue with that! Even so, that leaves most of our body open to therapy if needed. Why live with painful lesions when radiation can zap them into submission?
But what about side effects?
I always seem to feel dizzy and out-of-sorts following my first couple appointments, but that fades away by the third or fourth day. Before my latest round of radiation therapy, I was warned that I might experience diarrhea, since I was being hit with radiation on both hips, which flank the lower gastrointestinal tract. Fortunately, that didn’t happen.
I know patients who have become fatigued after undergoing 15 sessions or more. I experienced debilitating vertigo and nausea when my back and neck were radiated following my diagnosis in 2007. Looking back, those side effects were most likely caused by the fact that one of the beams was close to my head and that I was on daily dexamethasone (Decadron). One thing I have learned: radiation and dexamethasone don’t mix!
Overall, I won’t hesitate to suggest trying radiation therapy again in the future. And considering how susceptible my bones are to developing new lesions, my guess is this won’t be the last time I visit my new friends at the local radiation therapy clinic.
For now, I’m able to walk and exercise with a lot less pain. That’s important. Staying active is something we can do to help keep our bodies strong and healthy.
Radiation therapy has been an important tool to help improve my quality of life. Maybe it can help you someday, too.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Pat, you're always full of good information! Thanks for sharing and I'm happy you're better.
Pat,
I agree with you wholeheartedly! I had two compression fractures in my thoracic spine and lower spine. My oncologist suggested radiation. It was downstairs from his office so down I went. It was not painful but funny! Since it was my T-9 that had to be treated, they measured me out and wrote on me with a "sharpie" permanent pen. And I had to leave that on! They even put clear medical tape over the marks.
See, I live 44 miles from the clinic and was working full time. So I went to the treatment before work. I started work at 10 am and the clinic opened at 8 am, so I was there at 9 am for a 5 minute treatment, then back on the road to get to work (if they had to remeasure and remark me it would take longer for the visit). This went on for 10 days (not Saturday or Sunday). It took me a month to get the ink off.
Then on my L-4 (more marks) and 10 more rounds. But, with the L-4, I did develop sever nausea! It did not hit me until the 3rd day and it took almost 4 days to subside. So it took me longer to get that treatment done. And I had to take off time from work to do that set. They gave me medication for the nausea that helped a lot. So I continued to finish the treatment. But I would do it again because of the overall effect on the pain.
But I too recommend radiation for the lesions.
Thank you Pat for such wonderful articles. They do help others. I know that they helped me
Pat, when I had my first autologous stem cell transplant back in 2000, part of the protocol was still full body radiation. I was told later that I was one of the last patients to have the radiation part of the treatment - the powers that be had decided it was no longer necessary. So, though I may not have needed to have it done, I can't argue with being in remission still, 14 years later!!
I do wonder about any long term side effects that may pop up, but I'll deal with that if it happens. I am very glad that radiation has alleviated your pain. Thanks so much for your upbeat and informative articles
Thanks Kathy and Mary! Janner, myeloma is so sensitive to radiation, I wonder if that part of the process helped kill some of it throughout your body. Too bad we can't get hit with full body radiation; enough to kill the myeloma but leave us glowing in the dark but OK...
Aloha Pat,
Thanks for sharing about a subject that I am completely ignorant about. It infuriates me that your insurance has a limit on the number of treatments. Seems to me that if your doctor says it is necessary to treat your condition, then that ought to be enough for the insurance company.
As usual, you are leading the way for me. I really appreciate it. Keep your chin up!
Aloha
Tom
I am so glad that radiation has helped you. Keep smiling and moving.
Pat,
I use electrical muscle stimulation in the area where the bone pain occurs. This works wonders for me, and the effects last about 2 weeks. A 30 minute treatment at home with this device, about the size of a cell phone, 2 sticky pads like ones used in electro-cardiogram, and the results are amazing.
Perhaps you may find this useful as well.
Yes, Thomas, restricting the number of radiation treatments seems silly when compared to the cost of novel therapy agents.
Always great hearing from you, Libby!
And Eric, that sounds worth a try. Glad it works so well for you. Is it what's called a TENS unit?
Thanks Pat for the information.
Back in 2009 and 2010 I experienced the pain of three separate incidents that left me with a total of six compressed vertebrae. The incidents were caused by trying to lift heavy objects. I am not a quick learner; it took me three episodes to stop doing stupid things. I wasn't offered radiation but I did learn that hydrocodone and morphine are not miracle drugs.
It took daily walks for two to three months after each incident to get rid of the pain and the drugs. Now, four years later, I have only a stiff and sometimes sore back, but no pain because I have stopped doing stupid things and no bone issues. Also, x rays have not indicated lesions.
My question is, were you given radiation to get rid of the pain, or for treating lesions, or both? I don't intend to compress any more vertebrae but, if it happens, should I request radiation?
Thanks for thinking about this, Pat.
P.S. I had SCT in 2010 and no recurrence, yet.
Pat
Yup. TENS unit is nice cause it's totally portable, wear it while riding in your car, watching TV, or any other low aerobic exercise, like walking, shopping. Used it now for 3.5 years with good success dealing with myeloma pain.
Hi, Pat!
Good to see your article this A.M. I'm so glad that the radiation is giving you relief and you are able to do the walking and exercises you want. Thank you telling about radiation. That's important information for us mm folks.
Take care, Pat, and have a nice day there in No. Fl.
Sylvia
Pat,
Great to hear that this is working well for you.
I've always wondered how narrow and controlled of a radiation beam is possible when treating mm and what specific radiation technique is routinely used for treating mm?
I see ads for hospitals that are bragging about ultra-precise "Cyberknife" radiation treatment technology that is supposed to not effect surrounding tissues. I wonder if this is an option for treating mm lesions or if radiation treatment clinics use some other kind of technique for treating mm? And are CyberKnife and related techniques as focused as hospital ads make them out to be?
It can be. When I was still going to Moffitt Cancer Center in Tampa, I saw a radiation oncologist that specialized in treating blood cancers. He was one of less than ten in the U.S. at the time. He told me that, for most lesions (like mine), super high tech approaches weren't necessary. Instead, most local radiation oncologists with standard equipment (still costs hundreds of thousands of dollars) should do the trick. I believe they can even control how deep the beam goes into your body, stopping it before it damages organs located behind a tumor or lesion. Amazing!
Pat, first time writer. I am three years with myeloma. I have been very fortunate. I have little discomfort, but do get tired and, if I ignore the fatigue, it seems to go away. For my three years with the disease, it seems to be a mind-over-matter situation. My wife never misses a word you write and directs me to read all of your articles. Keep up the good work.
Pat, I enjoy reading your matter of fact columns on the daily struggle with myeloma. Too many articles are about why a flower looks good or a hummingbird winked at me today. In life's battle with a serious disease, facts trump ideology any day.
P.S. My brother is a radiation oncologist and I forwarded your column to him and he agreed with you on all points. He said keep up the good words as they make sense and dispel alot of unnecessary fears.
As always, wishing you and all the best,
Ralph
Glad to help Robert -- and to hear you're doing so well. And thanks for the affirmation, Ralph! Yes, I agree; the cat and hummingbird type posts are one of the reasons I started writing. It has gotten better since then, but back in 2007 it was hard to find useful information from a patient's perspective.
Pat,
Your articles are always filled with so much hope and great advice.
I wish there was a better way to fix the problems we have but with the current treatment protocol available, I agree with you that radiation is definitely overlooked and underrated.
As I had mentioned in a previous post, my dad had relapsed and was found to be double refractory to Revlimid and Velcade. His doctors put him on doxorubicin and he is getting better. In fact, he is going back to work later this week, which is quite amazing considering that I had to rush to India as my family felt that he may not make it during one harrowing weekend.
His doctor says that there are "plenty" of drug combinations (old and new) that could help him. I am not sure about the "plenty" part, but am glad that his doctor is not giving up on him!
How are you dealing with your relapse? Would it be pertinent for me to ask about your current course of treatment?
Thanks
Vijay Poduval
Glad that your father is doing better, Vijay. His doctors are on to something; I know a number of patients that do well after a third or fourth drug is added to their therapy. I may soon join that group. My current therapy is pomalidomide and dexamethasone. My myeloma specialist wanted to try that as a baseline after I become refractory to Velcade and Revlimid. It's holding my numbers steady but not knocking the myeloma back. I see him this week. It will be interesting to try and understand what he proposes to add to this basic doublet. I will most likely write about it in next month's column, so stay tuned. Good luck to you both!
Pat,
Thanks again for an informative article. I always learn from you.
Take Care,
Jenny
How kind. Thanks, Jenny!
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