Pat’s Place: My Myeloma Has Relapsed, Now What?
I had been experiencing mild, intermittent pain in my right hip and femur for months. About ten days ago, the pain became acute—so much so I could barely walk.
Although it has improved some since, my wife Pattie insisted I move up my scheduled quarterly visit to Moffitt Cancer Center and get it checked out. I'm so glad I did!
An examination and subsequent MRI showed probable myeloma-related activity in my hip and fluid in my hip joint that will probably require radiation.
To make matters worse, my M-spike (monoclonal protein level) came back measurably higher than only a few months before. It may be time to rethink my treatment strategy.
I wrote about all of this several days ago on my blog. And when I returned home from a long day of tests yesterday, I discovered dozens of emails and comments from fellow patients. How uplifting!
Most of the comments featured more than positive affirmations. My fellow patients offered advice. Lots of advice.
Jerry from Alabama shared, “Pat, most of the new myeloma cells could be in your leg. After radiation, your M-spike may go down.” Thanks, Jerry! I hadn't thought about that.
Several other multiple myeloma survivors shared what had worked for them in the past.
As a matter of fact, I was surprised by how specific and helpful some of the advice was.
But how do I know which advice to follow? Should I speak to my doctors now about changing my treatment plan or wait a few more months? Would my leg and hip need to be treated with radiation—and if so—might that help my M-spike go down as Jerry had suggested?
As I sat down and tried to get my head around everything I had been told by the doctors—as well as my fellow patients—I couldn't help but think back to what it was like after I was first diagnosed almost four years ago.
I remember it felt like my head was spinning and my world had been turned upside down. I was scared—and not very knowledgeable or focused.
I'm more experienced now. But many of those same feelings have resurfaced.
I'm not worried about my recent complications. I have a good health care team I trust to help me sort through my options and come up with a new treatment plan.
But many of you may be sifting through the treatment options for the first time. I’m sure you have just as many questions as I do, if not more. Maybe there is a way I can help make our decision making process easier—and a bit less scary.
Here is a list of questions all multiple myeloma patients should consider:
- How carefully should a patient be tracking and following their numbers?
- How much does a patient need to know about various treatment options?
- Is it OK to suggest a change in a treatment plan due to side effects, trends in numbers, or having learned about a better therapy regimen?
- If a patient’s doctor suggests a treatment option that they don’t really like, should the patient suggest another one, or does the doctor always know best?
I will attempt to answer these questions—and more—over the next few weeks. Please feel free to post your thoughts, questions, and suggestions, and I’ll try to address them as well.
Feel good and keep smiling! Pat
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All my prayers and hope for you Pat.
Another dear friend's numbers are climbing and it is disheartening and frightening. Please do keep us all posted on your progress. I continue to have great interest in how our fellow travelers with Myeloma are doing. I think I forget that it can rear its ugly head no matter how well we are bumping along living our lives with optimism. Hang in.
Best,
Lori
How kind, Lori! Hopefully watching how experienced myeloma survivors like myself navigate this therapy maze if and when we relapse- Pat
Hey Pat.
Sorry to hear this news. I don't want to add advice since you already have so much, but .... have you considered trying Margaret's protocol with Curcumin to see if it helps. It would sure be one heck of an experiment, and I don't know if it can do any harm (first do no harm ..).
My prayers to are with you. Maybe if we all think positive thoughts and send you healing energy .... Ok - I think I'll do that too.
h
Hanna-
I should try curcumin... I guess I knew several patients who were using it and the myeloma still came back. To be fair, it is difficult to measure if a supplement slows disease progression once it starts. Thanks for the advice! Really! Pat
Pat,
Sorry to hear this news but we know with your positive attitude and knowledge, you will find a way to tackle this - you are always here for others on the Beacon - know that we are here for you too.
Rex and Kay (Kansas)
Thank you so much! Any thoughts on how I can use my experience to help others? Pat
Pat,your articles are an excellence source of information on the research you have done. And I believe anyone who shares his/her own experiences regarding the disease process, treatments, outcomes, etc. helps everyone. Even though individual experiences may be different, there are similarities. So as to thoughts on how you can use your experience to help others - keep on doing what you do so well- share what you know. Be well my friend. Rex and Kay
Thank you, Rex and Kay! Glad I can help- Pat
Hi Pat,
I had about the same hip and femur problems about 1 year ago that you are now experiencing. My pelvis was also involved and I felt a sharp pain in my pelvis (anterior superior illiac crest) while running after my dogs! X-rays revealed growing lytic lesions and I started radiation. That helped a lot with the pain, but we determined that the myeloma was active. Since I had a mini-allo transplant in 2004 I was able to have a donor lymphocyte infusion (DLI) where I received white blood cells from my sister! So I'm now back in remission but I could have tried revlimid or velcade too. There are lots of options when we relapse and I'm confident you will respond well to whatever treatment you decide. I look at myeloma as a chronic disease that is manageable with the new treatments developing. So hang in there and may God Bless you and your family.
Steve in Minnesota (-27 this morning!)
Pat,
In our previous post we forgot the most important thing -- take care of yourself!! You are in my prayers as are all of those on this journey! The good thing about our "village" is that we will be here longer than those before us. Rex and Kay
Pat, I recently came across several articles on the use of Inositol hexa-phosphate in cancer therapy that look rather promising. Please read the research paper entitled "IP6 in Cancer Therapy: Past, Present and Future". Google the title and download the article. Also Google the inositol hexaphosphate. This is an over the counter product that may be useful to you at this time. Please keep us posted. God Bless.
So kind, Rex and Kay! Right back at you... Pat
I will do a little research about this, George. But I have to tell you I am pretty much a "conventional medicine kind of guy." I have consulted a naturopathic M.D. and studied alternative nutritional options. But for multiple myeloma, conventional meds work most of the time--expensive or not. But thanks for the suggestion--I promise to keep an open mind- Pat
Pat, Just want to wish you well. I read your posts on a regular basis, and you've given me a weath of knowledge. I feel confident that you will get things back under control. My thoughts and prayers are with you, and I look forward to hearing good news from you soon.
John
John-
Thanks so much for reading and your kind thoughts and prayers! Knowing I can help others gives me strength to deal with my own myeloma related challenges- Pat
You mentioned that your pain in your leg was acute and you were unable to walk on it. 1st of all I am a BC survivor nearing the end of my 2nd year. When i was dxed with cancer an ostylitic lesion was found in my right disital femur. 9 months ago i started getting pain in my femur area.
i ended up going to the er unable to walk on my leg in early July. I was sent to physical theraphy that helps as it keeps the muscles fexible and from getting atrophy. I find that keeping active is a good thing.I find the Wii Fit balance board to be a good PT tool. I also use a TENS unit.All my blood tests have come back normal. I do not have fibro or RA...nor MM. Mine seems to be a Neuropathic Pain.
It was mentioned about taking cumin and ginger i take Zyflamend and Zyflamed PM which is clinical recomended. Our RELAY FOR LIFE will be in May... I will be walking in the survivors lap.
Here is a poem i have hang on my wall.
don't quit
When things go wrong as they will
When the road you're trudging seems all uphill
When the funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit ,
Rest if you must but don't you quit.
Life is queer with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won as he stuck it out
Don,t give up though the pace seems slow,
You may succeed with another blow.
Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,;
So stick to the fight when you're hardest hit,
Its when things seem the worse, that you must not quit
Thanks for sharing, Sharlene! This is tuff stuff, isn't it? Glad you have a way to keep going and that you are doing OK. My docs found a new lesion in my hip. Pain in my leg turns out to be not so much from a hole in my femur as fluid in my hip joint. The fluid may or may not contain myeloma cells. I am going to see an orthopedic sarcoma specialist next week- Pat
Pat,
So sorry to hear about your relapse and your pain. My husband has MM and I have learned and been encouraged much by you and your journey with MM. Know that you are in my prayers and I am thinking of you and your loved ones. Looking forward to hearing good news and I know you will be lead to the right course of treatment. Kathy in Wisconsin
Kathy-
Always great to hear from someone in Wisconsin! Badgers lost the Rose Bowl--Packers must win next week! Thank you for your kind thoughts and good luck to your husband- Pat
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