Northern Lights: Reaching The Five-Year Milestone
The month of July has always been a special month for me. There are many family birthdays, and my husband Dilip’s and my wedding anniversary also falls into this month (it’s our 37th this year).
However, five years ago, in July 2009, I had a very bad month. That was when my myeloma was diagnosed, and it has changed the course of my life forever. Every year since then, I have felt apprehensive as my myeloma anniversary approached.
This year, however, I feel I have cause to celebrate for the first time, since I have now reached the five-year survival milestone.
This five-year milestone also gave me pause to think about what I have been through over the last five years, and how my life has changed since my diagnosis.
The months leading up to and immediately after my diagnosis were tough. During the spring of 2009, I felt ‘off’ psychologically, was tired, and had low back pain growing in severity. This culminated in four compression wedge fractures. It was my younger daughter, studying at medical school at the time, who in July suggested running protein blood tests. The abnormal test results led to an appointment with a hematological oncologist, who predicted and diagnosed multiple myeloma.
Four cycles of Velcade (bortezomib) plus dexamethasone (Decadron) later, I felt much better. My bones were healing with the help of Aredia (pamidronate), and I felt lighter and more clear headed.
I then went through stem cell harvesting in December 2009 and had my transplant in January 2010. Since I did not achieve a stringent complete response after the transplant, I took a low dose of Revlimid (lenalidomide) for a year, which put me into the stringent complete remission that I was so happy to obtain. To say I felt relieved at this point in time is a complete understatement!
Since then I have not received any additional treatment, but, every three months, I have comprehensive blood testing done and see my doctor. Because I am acutely aware of how serious a disease myeloma is, I still worry about the myeloma becoming active again.
And since January 2013, my doctor has observed some myeloma activity. I had an instance of a higher kappa/lambda ratio in the serum free light chain test, but then the ratio went back to normal. My M-spike has also been slightly elevated since last August.
However, the values are not high enough for me to re-start treatment. I am still considered to have stable disease. My doctor has told me, though, that if my M-proteins were to climb too high or start to increase rapidly, I would be put back on medication -- most likely Revlimid plus dex.
Throughout my five-year journey with myeloma, I have learned quite a lot about this disease and met many myeloma patients, caregivers, and medical staff.
I didn’t ask to have cancer, but since my diagnosis, I have received nothing but encouragement and kindness from other people. That has been the silver lining to this cloud.
Perhaps because of my traumatic injuries and a lengthy time of treatment, I became quite immersed in studying myeloma.
As a result, I got involved with support groups at the local and national level. I am most interested in supporting myeloma research and helping with patient advocacy. I think that, after dealing with the disease for five years, I can see what we patients could benefit from most.
I feel very lucky to only have a slow growing form of the disease. I can live with my damaged bones, my stable disease, and my worries, too. I still exercise a lot, and try to eat well and get lots of rest in order to keep my immune system strong. I truly appreciate my new normal and the fact that I have not been on therapy since April 2011. However, I am aware that this situation could change anytime, and it’s good to know that there are treatments available to me if I need them.
Looking back over the last five years, my overwhelming feeling is one of gratitude and happiness. I realize that I might not have had these five years at all because my myeloma was sufficiently advanced that I could have perished from it shortly after my diagnosis. Thankfully, novel agents and the stem cell transplant were available to me, and those treatments have kept my disease in check so far.
My husband and I are ‘empty nested’ now, and we are enjoying seeing our two daughters moving on with their own careers and personal lives.
At age 63, I have a lot of wonderful memories to look back on, but I think I can also reasonably hope for a few more good years. Fortunately, I have been able to continue doing the things that I really enjoy, such as singing in my choir, volunteering for myeloma groups, pursuing my stitching hobbies, doing bookkeeping work, writing, reading, exercising, gardening, and travelling. In fact, these activities keep me just as busy as ever.
My father, who is 88 years old and a World War II veteran, tells me that many soldiers did not even survive to age 20 during his youth. The survivors of that war, or any other war for that matter, are aware of how fortunate they were. We still honor the lost ones at Remembrance Day ceremonies here in Canada.
Sometimes I feel the cancer world is like that too. We who have survived are very thankful, but we also remember those who were lost to the disease. We try to work to make the situation better for the future, just as the war veterans have.
My friends who are not afflicted with myeloma tell me that no one should have to worry so much about their cancer recurring. As one friend said, ‘If you can make it to five years, you can make it to ten years!’
That is certainly my hope.
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The quotation for this month is from Jean Massieu (1772 – 1846), a French deaf educator, who said: “Gratitude is the memory of the heart.”
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
When you took Revlimid for a year — did you take dex too?
What dose Revlimid did you take and did you have any side effects?
I'm wondering, because I've hit a point where my M spike just rushes back up when I stop the Revlimid treatment.
I just passed my sixth year from diagnosis in 2008. I had three years remission after my stem cell transplant in 2010. It was wonderful to be drug free during that time!
Thank you for your thoughtful pieces! From your friend in the Northwoods of Michigan.
Julia Munson
Hi Julia, Thanks for your note! In answer to your question, no, I did not take dex with the year of Revlimid. I started on 15 mg, but that caused me to become neutropenic, so the dose was lowered to 10 mg. I still got neutropenic at times, so after I got into an sCR, I only took 5 mg. But, in the case of a relapse, I understand that dex would be part of the treatment.
Bear in mind that when I started on Revlimid, it was literally just approved here that very month! So, undoubtedly I was one of the first in Alberta to receive it as a drug given as a cancer treatment, outside of the previous clinical trials here. I don't know what the current protocol would be if I were just finishing up a stem cell transplant now.
Congrats on hitting five years. You're doing great and have a fantastic attitude.
Thank you for writing this.
What a great column! I hope your good health continues!
Nancy – Your column was the first thing I saw this morning and so I started the day with a huge smile! Great to see your progress and have you as a friend! Keep on writing! ::)
Nancy,
Congratulations on reaching 5 years. I too hit my 5 year anniversary this year, back in February. Unlike you, I have been on a continuous maintenance therapy but lead a normal and very active life. Let us hope that we will be reminiscing about our remissive states 5 years from now!
Ron
Nancy,
Loved your article. My story parallels yours. I'm in my 5th year since my stem cells transplant, feeling good, and medication free. At 73, I'm looking for at least another 5, then maybe another 10. If my myeloma does make a comeback, I'm ready to take it on.
Aloha Nancy,
Thank you for the look ahead (hopefully) for those of us striving for the 5 year mark. Your outcome is encouraging! I hope to be able to write about my own 5 year survival someday.
Keep up the positive outlook!
Tom Shell
I find your rendition of what you have been through the past 5 years to be very encouraging. Like you, I was diagnosed end of June / beginning of July, but just last year. Like you, I did induction and a transplant and am now on Revlimid maintenance. And, like you, I have been able to return to a relatively normal life doing most of what I want to do.
But since I only just celebrated my one year anniversary, there is still much anxiety over when / if the myeloma will progress. To hear that you have had 5 years without major advance in the disease makes me hopeful.
Thanks everyone, for your kind comments! I really do feel that I have been fortunate so far, and it seemed to me that it was a time to pause and note a five year survival. A lot of cancer stats include that time frame, and when I was newly diagnosed I really worried about my future too. I am sure everyone reading does have those concerns of course.
In reality, I think I had full blown myeloma for some time before my diagnosis, for a number of reasons. So I could actually already be a ten year survivor, but who knows?? These sorts of stats are only recorded from the time of diagnosis. I guess that's another reason as to why it's quite unpredictable as to how well a patient will do, and for how long. We don't all start from the same point in our disease when it is diagnosed. We just have to hope for the best, and live each day to the fullest.
Hi Nancy,
Congrats on 5 years. Thanks for all of your contributions to the myeloma patient community. I can't wait to read the article discussing your 10 year anniversary!
Mark
Thanks Mark, I WOULD like that too, my 'official' ten year anniversary. Best wishes to you also. Just imagine if we were all posting in comments then!
Congratulations Nancy on five great years since your diagnosis! May you stay recurrence free as long as possible. I am two years behind you, celebrating three years, which have been in many ways the best years of my life. However, due to unknown high risk factors, my disease has been recurrent starting 10 months after my ASCT, and I have become refractory to all approved novel agents, and even BRAF and MEK inhibitors (which worked initially very well). So I am now seeking clinical trials and am excited about several immunologic therapies, especially CAR-T.
This month I have taken a healing sabbatical from my holistic OB/GYN practice after 28 wonderful years. I am not calling it my retirement, rather a sabbatical of intense study and deep rest. Intense study of the basic science and possible therapeutic approaches behind the immunotherapy of cancer, which I am convinced will be the future of most oncologic treatment. And deep rest because our own immune system is our best defense against infections and cancer. Psychoneuroimmunology has proven the mind-body connection with thousands of studies.
What is it that makes multiple myeloma one of the most unpredictable cancers? Here in the Beacon we discuss individual stories ranging from complete remissions for many years, to others who suffer painful and severe symptoms, sometimes unrelated to the extent of their disease. I believe that it is a complex interaction between our genetics and our environment that determines the expression of our disease. Epigenetics is a hot topic now, both in scientific and metaphysical circles. But I suspect most cancers start as one mutation that is missed by our immune system, leading to unrestrained tumor cell growth.
So we co-create our own reality, but as we know, the healthiest people can get all sorts of cancers, while some others flaunt many healthy habits, yet live to a ripe old age. You can certainly improve your odds with diet, exercise, and other lifestyle changes. However, I suspect (actually know) that there is a third factor: the role of God, Spirit, karma, or many other terms which I believe are quite synonymous, yet intensely personal and individual. Having gratitude, love, faith, hope, and living in the present moment certainly increase the quality and appreciation of our lives. But ultimately not my will but Thy Will be done! And it is what it is, that's all there is to it!
Enjoy the summer and island living for a while. Time to finish my philosophy for tonight. Namasté, Jan
Thanks Jan, you are such a gracious doctor and I can imagine much appreciated by all of your patients. Enjoy your sabbatical and I hope it does your health good too! We need the spiritual side to our lives, I am convinced, and that became more clear to me in the last few years. Hope you can figure out what immunotherapy approaches might work best in your situation too!
I am back in Calgary now, after a brief visit to family on Vancouver Island. It's very nice here too -- peak summer, and I have a lot of gardening to catch up with, plus am enjoying being outdoors at this time of year.
Hope you post in on TMB book club site when you have the time, since I know that you did actually know the author of 'Enjoy Every Sandwich' and attended workshops given by him (I think). Take good care, Namaste!
Hi Nancy, thanks for the article and congratulations on this milestone.
Jan, I am registered on the MB as terryl1. Please send me a private message or a way to contact you. I can provide you information about a soon to launch CAR T cell trial. Best. Terry L.
Thanks Terry, hope all goes well for you too! Jan , Terry was on the carfilzomib clinical trial, as you might recall. He knows about that part of myeloma medicine! Also, the Forum on the Beacon is quite an invaluable resource for any questions.
Nancy, you mentioned that you felt psychologically "off" in the months preceding your diagnosis. Could you elaborate?
Hi Sybil, that's a good question, and I asked my husband about it too just now. There were a number of factors at play here. Firstly, my family is quite athletic and hard working and I was having trouble keeping up with them! I no longer felt strong enough to run 10 km as I had been doing, and also the pain from the backaches was wearing me down (pain has a way of doing that). I turned down going on a trip to New York that spring with my husband and my daughter. So I stayed home alone and tried gardening ... that's when I foolishly lifted a pot that was too heavy and got a compression fracture. I could feel the bone give out -- that's not a good feeling at all, and I hope I never experience that again.
Well, it was a litany of weariness and I remember being fairly difficult to get along with also. My friend Ann, who posted a comment here previously, noticed that I had a sallow complexion and was worried about me also. We were out delivering flyers to a neighbourhood concerning a proposed development to which our heritage park group was opposed. As I dropped off flyer after flyer in mailboxes, I just was a real bear!
It didn't make a whole lot of sense at the time, but in retrospect I was struggling to get by.
Thank you for sharing. Both of my parents died of myeloma. In fact, they both had it at the same time, we just didn't realize it. Looking back, I can recognize mental changes (primarily depression, unexplained panic and anxiety, and listlessness.) Of course, when we feel physically lousy, it is usually reflected in our mental health as well.
I wish you the best in your particular journey with myeloma. It truly is a unique experience for every individual. I can attest to it by witnessing the two different presentations of the disease with my parents.
I am sorry, Sybil, that you experienced both of your parents passing due to myeloma. That is really an awful coincidence. Do you have any theories as to why they both had MM? I don't know if there is a genetic component of course, but there could be an environmental link, and I hope that you and any siblings have had the appropriate tests on your blood to rule out MGUS. Thanks for your well wishes also.
Hi Nancy,
Just reading Sybil's post about both her parents having myeloma. My husband has myeloma and his older brother has just been diagnosed. I know of several other cases of myeloma in members of the same family. Genetic similarities are the obvious cause, but that would not be the case with two parents, making one wonder about family exposure to something in the environment.
I know that most medical literature states that there is no definitive cause of the disease, but there are some associated risks (farming background, exposure to certain chemicals etc). I wonder if there has been much research attention (and dollars) focused on trying to narrow this down and attempt to be more specific in identifying common environmental exposures in myeloma patients in the hope of curbing the increase in this disease.
Hi Sue, I have noticed from talking to others in my support group that often there seems to be a connection to occupations such as farming, or other occupations that involve handling chemicals. I know I had some chemical exposure in the past, just from the environment and the indiscriminate spraying of herbicides and pesticides when I was young. I also worked in a research lab for awhile (where I handled solvents), was exposed to second hand smoke, etc.
There are some occupations where MM has been recognized as an occupational hazard, such as for firefighters, and also for US military exposed to Agent Orange (an herbicide used in the Vietnam War for defoliation of vegetation).
It is a really interesting area and maybe we could find some research papers on this topic. IMO, the best thing we can do now is to try to help ourselves to overcome MM and also to prevent having such a lot of cancers in the younger generations.
Nancy,
Bravo on the 5 year milestone! You are an inspiration!
Regarding the genetic link to multiple myeloma, after finding out that my paternal grandmother died of MM almost 50 years ago, I starting doing research about a genetic link. (I was diagnosed in 2012 and am 2 1/2 years post SCT and in total remission.) My oncologist suggested that family members get myeloma blood tests every few years as part of their physical exams and CBCs.
Here is the link to the genetic study done in the UK:
http://www.cancerresearchuk.org/about-us/cancer-news/news-report/scientists-identify-first-genetic-link-to-myeloma
Thanks Bev, I don't think I am an inspiration, just lucky actually, but that is a nice compliment. I volunteer here and in other groups because it is very interesting, and I do have enough spare time to do so. I thank the editors of the Beacon for their space in this publication, and for their editing of my columns. This is my 30th column, and I am glad to be still here writing!
I enjoyed reading the article about the genetic study, and from that also another article about 'snips', or just a change in one amino acid in one's DNA. These may be clustered in an area, such as the BRAC gene, which is quite newsworthy. Let me post it onto the forum, where others may see it and like to comment on it too! Hope you are well ... sounds like you are doing very well.
I will never know with certainty what caused both of my parents to develop myeloma. Whatever the reason, whether it was environmental exposure or just an amazing coincidence, myeloma is never far from my thoughts. Only time will tell whether I develop the disease or not. In the meantime, I get yearly CBC's and serum protein electrophoresis. I also stay on top of the latest trends in treatment. We are all fortunate to have so many sources of information and support.
Thanks Sybil, hope the good health for you continues and I agree that we are all fortunate to be able to connect with people worldwide and learn more about myeloma and its treatments, as well as to have support in our quests.
Congratulations to you and Dilip on your 37th wedding anniversary this month. And also congratulations on your 5 year multiple myeloma anniversary. Here's to your next 5 years, and the next 5 after that, and ...
Thanks Mike! Time has really flown by for me and Dilip, and we are so blessed to have each other for support and our wonderful children too!
Was it you who mentioned the free courses from MIT, the Biology 700 course in particular (EDX classes)? I signed up for that, and although I was late starting and haven't yet got even one assignment in on time, it has been really good to audit it. I took a B.Sc. in Microbiology back in the 1970's. Some of the course content is new to me, but some is the same. I hope to keep up enough to understand the 'Immunology' course starting in August.
Dilip has been following along on it too sometimes. He has a PhD. in Microbiology from back then too, and then got an M.D.
(1980). He has a family practise and works on a stroke unit also.
We were pleased to see a section on 'Beadle and Tatum', who won A Nobel Prize for the 'One Gene, One Enzyme' theory. Dilip met Dr. Beadle once in India. Also mentioned Ester Lederberg, who developed 'replica plating' of yeast or bacteria colonies from one agar petri plate to another using a piece of velvet. I did meet her once in Calgary, for she was visiting the research lab I was working in. She offered me a job in California! That was amazing ... but I did stay here as you may have gathered. Back in the 1970's was when molecular biology, and the study of genes with DNA and RNA, was just getting going. So it's nice to have a review of it again now.
Hi Nancy, yes that was me who mentioned the Biology course from MIT. That's so cool that you are auditing it! I didn't know whether it would be of interest to anyone here, so I'm really happy to hear that at least one person is interested! I'm auditing it too, enjoying it a lot and learning a lot, but I'm way behind. I'm hoping to make a big push to catch up this week.
That's really neat that you feel like you're learning something from the course, given your prior experience. Also very cool that your husband is following along sometimes too.
I know it must have been a big thrill for Dilip to meet Dr. Beadle. I've been fortunate enough to meet (or at least hear them speak) five Nobel prize winners during my 30 year career at Bell Labs. Each time it was very exciting. That's very cool that you met Ester Lederberg and that she offered you a job. It's not everyone who can say they turned down a job from Lederberg.
Thanks Mike, I don't think I realized at the time how famous Dr. Lederberg was, and I already had a job and a full life here. Worked at Ken Sanderson's lab, on genetics of Salmonella typhimurium. That is where I met Dilip. We were the only marriage from that lab as far as anyone knows!
We still keep in touch with our former mentor and professor. I showed him my column about DNA sequencing last winter. Seems a long time ago now that I worked there and after that I went on to teach junior and senior high school for a short while too! So science has been a life long interest. That's why I gravitate to 'history of science' books etc. And that's probably why also I find the Beacon to be an interesting site, since there is so much scientific and medical content published and commented on here.
I really appreciate you mentioning the online courses. I see that there is an exam posted for next week!!
Congrats! That's a wonderful experience. I hope I can do the same.
Bob
Hi Nancy, that's neat that you and Dilip met when you were both working in Dr. Sanderson's lab. And great that you're still in touch with him. Those lifelong connections are really important.
I agree with you about the value of the scientific/medical content and discussion on the Myeloma Beacon site. That, along with a sense of community among frequent contributors/posters, make the Beacon special for me.
Thank you for your monthly columns. I know it is a lot of work. I read everyone's columns each month, almost always learning something from them. But yours are among my favorites because of the scientific angles you often discuss.
Thanks very much, Mike. I appreciate reading your comments too, and see that you started with a diagnosis of MGUS five years ago. Hope you are well now! Good luck Bob and hope you do very well also.
Hi Nancy,
It is 5 years for me too! Happy anniversary, it was our 23rd wedding anniversary this year & I would love to make it to our 37th. It is always great to read your columns.
Take care,
Libby
Thanks Libby, That's a coincidence about the five years! Nice to read your comments and hear news from Australia sometimes also! Take good care of yourself too.
Nancy,
Thank for for this very touching article.
I wish you 20 more years (treatment free of course!) and wish you all the best.
Maro
Merci bien, Maro! J'espere que ton mere est bien aussi. Mais si en a besoin de les traitements, ils sont la pour ton famille.
(tHANKS, Maro...I hope that your mother is also well, But if one needs treatments they are there for you).
Your mother is fortunate to have such an attentive son. I also hope to live long, but am realistic about myeloma, and think it may not be 'treatment free'. I really am grateful that medications are available that may hold the myeloma in check if one relapses though!
5 years -- something to celebrate! Sorry I am so late in jumping in on this!)
Thanks April...I think you are a few years ahead of me on this anyways! We must start posting on the Book Club soon, I think! I started in also on your suggested book and have enjoyed the couple of chapters. Seems I am part way through a number of books right now, which is actually normal for me (not even a 'new normal'!).
Hi Nancy,
Thank you for sharing your story. Congratulations on five years; you inspire us. I'm very fortunate to be in our myeloma group with you here in Calgary. We get "to do" LIFE together, dear friend.
Love, Sue
I really enjoy working with you too, Sue, on our projects here. And of course the support I have received from the group over the last several years has given me strength. ("Nurture strength of spirit to shield you in sudden misfortune' - Desiderata). As a friend who is a former English and French high school teacher you inspire me too! I wish my fractured French was half as good as yours!
Sue and I were working together this spring on publicity for our walk/run this Saturday. I always learn a lot from volunteering, and have found a good 'fit' with SAMPS. We will be welcoming over 400 runners and walkers this weekend.
Hi Nancy and Sybil,
Have been away and just catching up ... thanks for your follow up comments regarding both of Sybil's parents having myeloma. Coincidence, environmental exposure, genetics? I do hope that somewhere in the world there is research going on to attempt to narrow down causes of the disease especially when affecting members of same family.
Thanks again,
Sue (in Canada)
Hi Sue, that is an intriguing question that I am sure many of us have wondered about. If you search for 'genetic causes of myeloma' online, many articles come up. it seems that 'pedigrees' of affected individuals have been studied, for there are cases of several people in a family having myeloma. Geneticists study these kinds of inheritances. At the end of one article I found the following medical advice:
Screening for healthy relatives in familial multiple myeloma
Inclusion criteria
Individuals with
- more than one first-degree relative diagnosed with multiple myeloma, or
- one first-degree and at least one second-degree relative with multiple myeloma
Screening programme
Annual protein electrophoresis to test immunoglobulins in blood and urine, starting at age 40 years. If families present with MM at a younger age, then screening could be started at say five years earlier than the youngest age at diagnosis in those families. This screening should be performed in a research setting
so, for anyone having more than one relative with MM, it's a good idea to get screening done from age 40, or even younger (if the patients were under age 40).
Hope that helps.
Thanks, Nancy. I'll pass that on to family members. Keep well, Sue
Nancy, Thank you for sharing your thoughts at your 5 year mark - what a worthy occasion to celebrate. Have you, in your "spare time," read "The Emperor of All Maladies - A Biography of Cancer," by Siddhartha Mukherjee? Excellent scientific non-fiction that reads like a thriller novel.
Patty, thanks for your thoughtful note. Yes, I did read the 'Emperor of All Maladies' a couple of years ago when it came up as a suggestion in a column by Kevin Jones. I really enjoyed it and this summer have been re-reading it. It was the top 'myeloma book club' pick, and there is a dedicated forum for reading relevant books. Look on the right hand side of the page.
The book was suggested by Dr. Arnold Goodman, along with some other picks. I have read into it again, although it seems slower this time. Maybe I am too scattered with my energies sometimes. I am also reading 'The Anatomy of Hope' by J. Groopman, which was one of his suggestions also. It is written from the point of view of an oncologist. The young doctor is learning about the psychology of treating patients ... a good read also!
Could you post a book review to our book club about 'The Emperor of All Maladies'?, if you have time? I think that would be a nice way to remember Dr. Goodman. Maybe we can continue on with the idea of the book club, even though we are mourning the loss of our fellow patient, Arnie. Below is the comment he posted to my June column, only a few weeks ago ...
Arnold Goodman said: "Nancy, Great topic. You hit on one of my favorite subjects. I too love to read and have been thinking about a list of
'cancer lit' books which are worth reading. A couple of other suggestions; The Emperor of All Maladies by Siddhartha Mukherjee, Books by Jerome Groopman: The Anatomy of Hope, How Doctors Think and Your Medical Mind. Also, before his fall from grace, I was a big fan of Lance Armstrong’s It’s Not About the Bike. I must have been give a half a dozen copies when I was first diagnosed. Still a good read, although it doesn’t ring as true now.
When you say you have a slow growing or moving form of myeloma what do you mean by that? Could you describe what type you have?
Hi Tracie, sorry I did not realize your note was for me at first. I have IgG kappa, which I suppose isn't that significant, but also the chromosomal testing on my initial diagnosis did not show any chromosomal abnormalities that might indicate 'high risk'. Also, I have had so many bone lesions as shown by the skeletal survey, and all over too, that it indicates that it must have taken quite a while for them to develop.
That's why I think I may have had myeloma for a few years before my diagnosis. One of my transplant doctors indicated as much to me too.
It has been unnerving to realize that the lesions were even on my skull, but, on the other hand, I have had very good treatment to date and am into my sixth year since the start of this. I have a friend here who is into his 7th or 8th year with myeloma, and we joke that we should be wearing bike helmets even on a daily basis!
Thanks Nancy. I was just diagnosed and I also have no chromosomal abnormalities. They call it standard risk mm. I am 52 and this has hit me for a loop. I have a lesion on L5 and 2 on each side of ribs. Also on each shoulder blade. How I was diagnosed was a tumor was growing in my spine and pushing on my spinal cord, causing leg numbness. I had emergency surgery to have it removed. They took L6-L8 out and put in a rod and pins.
We thought it was recurrent breast cancer but pathology showed mm. But I don't have a high percent of plasma cells in marrow (5%) and it is stanard risk. They radiated the area and now I will have Revlimid and dex.
Thanks for letting me vent!
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