Northern Lights: Passing The Six-Year Milestone
As another summer in the Foothills enfolds, with warm weather, brilliant flowers, sunshine and showers, and the relaxed atmosphere of outdoor living, I can only remember dimly how different the summer of 2009 was for me. I spent most of the summer of 2009 indoors. I was suffering from back pain and feeling very sick after being diagnosed with Stage 3 myeloma in July of that year.
I was very worried about my future. Receiving a cancer diagnosis is not anything anyone would like to have to deal with. And to be reading that myeloma is incurable certainly was not very reassuring for me either.
And yet, somehow, despite the odds, I reached the five-year survival mark last summer, and now, by the grace of God, am scrolling past the next milestone – six years, or 72 months! In myeloma speak, months are the metric for survival. Counting by months was one aspect of the survival statistics for myeloma that really bothered me when I was a newbie. Why could it not be survival in years?
Last year was different from the previous year, both good and not so good. Overall, though, I had a very special year that opened up my eyes and heart to new experiences.
Let’s start with the not-so-good news.
After a treatment-free period of 3.5 years, I had to restart treatment in early October because I had relapsed. I knew that my numbers had been creeping up, so it wasn’t that much of a surprise when my doctor suggested I restart treatment. Since it was a relapse, and because I was so sick at the time of diagnosis six years ago, I am being treated quite cautiously.
I am very grateful that the Revlimid (lenalidomide) - dexamethasone (Decadron) combination has been working well for me since then. Sure, I had to make some adjustments to my schedule. However, after just ten cycles, my counts are down now to below what many people with smoldering multiple myeloma have to live with.
Despite my having to restart treatment, my husband and I were able to travel a bit, which we both really enjoy. We visited Chicago for a few days, spending time at parks and the wonderful art museum, walking along the shoreline of Lake Michigan (which I had not seen before), and learning about the city’s historical architecture by taking a tour along the river that runs through the city.
I once again lost friends to myeloma this past year. I went to three funerals this spring alone. I am aware that multiple myeloma is still a very dangerous disease and not always ‘treatable’. Or, you could say that all treatments are tried, but they cannot always hold the disease at bay. I still mourn for the friends I lost to this disease, and I think it is an undercurrent in my thinking that propels me to try to help with that.
The real highlights – the really good news of the year – were on the personal side of my life.
Our older daughter got married here in Calgary in mid-September. In previous years, we have had nice autumn weather that stretched out to October, but not last year. The very week before, Calgary was hit by a weather event known now as “Snowtember.” A massive dump of snow broke branches, plummeted daytime temperatures below freezing, and threatened to ruin the outdoor ceremony. Amazingly, by Saturday, the storm was over, the sun was shining brightly, and the wedding went off as planned.
We attended the wedding of one of our nieces in Hartford, Connecticut, which was also a splendid event. It’s great to see the young adults, whom we have known since their infancy, all grown up now, choosing partners, and starting lives of their own!
To top it all off, I became a grandmother of twin baby boys, which has put me into a very happy place.
My family has always been very important to me, and to have a new generation coming up is awesome! As you can imagine, having twin babies is a lot of work for the young parents. My husband and I feel very privileged to be living in the same city and to be able to drop by and help out a bit. Babies grow so fast in their first year, and we want to spend as much time as possible enjoying the grandchildren.
Given the developments over the past year, I have had to drop some activities, or at least juggle quite a bit, to accommodate the time spent with family and being on treatment again. I continue to be busy as ever, but it is a ‘nice kind of busy.’
So it is on a cheerful note that I have passed the six-year mark on my myeloma journey. I hope that, with the help of modern medicine, the next year will also be a very special one.
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The quotation for this month is from Heraclitus of Ephesus (c. 535 – c. 475 BCE), a Greek philosopher, who said: “Time is a game played beautifully by children.”
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 .
Good for you, Nancy. May you have 6 more very good years.
Glad the revlimid is working for you.
Thanks for writing! It gives me hope. I am at the end of my 2nd year, going into remission a year and a half ago with the Revlimid / dex combo. There were ups and downs ... but many, many more ups during that time. Then my numbers started creeping ever so slightly up. Now I'm on Velcade / dex. Don't know what will be the result, but I'm still doing well – driving, shopping, working. At 70+, that's OK for me.
Despite the good stuff, I still worry about the future. I guess all of us do. Keeping one's spirits up is tough for me, but your article and others like it really help me keep smiling. Life is good.
Thanks, Rneb and Sue! I appreciate your kind thoughts. Rneb, thanks for all the helpful comments that you make on the forum.
Sounds like you are doing quite well, Sue! I hope the Velcade / dex works well also. That is the 'doublet' I took at the beginning of my treatment, and it worked well. That was before there was subcutaneous Velcade available, also.
I am joining in as my husband is now coming out of a very good "partial remission" after Velcade and stem cell treatments in 2012. He is about to start with the Revlimid - hoping he has good results with it. We understand that doing treatments a second time one does not get as positive a result as the first time. Is this what you have been told? Do you know of anyone who has been on Revlimid for more than 2 years and how their results are / were?
Brenda, that is an interesting questions about whether or not one gets as positive a result on a second line of treatment. No one has really discussed that with me, since we try to accentuate the positive, and no one knows how any individual patient will respond to treatment. In my case, I started treatment this time in a much better situation than initially, i.e., much lower 'M-spike' values, and not dealing with bone damage (thankfully). The Revlimid / dex is working well. I am taking the strongest dose of Revlimid (25 mg) and also dex (20 mg/week), probably since my 'fear factor' is still there from my diagnosis!
Yes, I have met other patients taking Revlimid long term! Also, on the Beacon, some patients post in on the forum with similar reports.
Congratulations on your 0.6 decades, Nancy! I'm glad to hear that the Revlimid + dex combination is working well for you. And I assume/hope that you are tolerating it well, or at least well enough.
Keep up the good work!
Mike
Thanks Mike, Hope you are doing well also! Seems like we are tracking each other in a way, since you discovered that you had MGUS in '09. Congrats on your 0.6 decades also!
I enjoyed hearing your success with treatment. It's wonderful to have family in the same town, I too have young grandchildren close by and they are the light of my life. You are right to stay focused on the positive!
Congratulations on your anniversary! I hope you will have many more!
What were your light chain numbers that made your physicians decide to provide you with more treatment? What are your numbers now after treatment? Do you know how long your treatment will continue?
Thanks in advance!
Hi Nancy,
Congratulations on 6 years post dx. Mine too! I'll be celebrating this year as I am turning 50 - there have been a couple of times during this MM journey when I thought I wouldn't make it.
I haven't been on the Beacon lately - I am finding it hard that people are losing the battle against this disease. I am hoping that research will find a way to control this beast.
Enjoy your summer,
Libby
Nancy
For Brenda Fric who was asking about someone who has been on Revlimid for 2 years. I have been on 25 mg of Revlimid for 2 years, along with Dex. The regimen is 3 weeks, every day for Revlimid, the 1 week rest. Dex is taken once per week, every week
This has kept my M spike under control but not zero. I do not have significant side effects, other than tiredness toward the end of each 3 week run of Revlimid. I was told also that each successive treatment is not as effective as the first. This is the case with me. The Year on velcade brought my M spike to near zero, that allowed me to have no drugs for about 2 years. Then started Revlimid.
The M spike is not as low but it is stable, and no bone issues.
Thanks everyone for your comments. We are able to share information and try to help each other out in a way that we could not otherwise do, which is one good reason why I read and write an online column here! I think that now I am not only the only columnist not American, but also the oldest one! That is an honour in my (almost) senior years to be doing something like this!
Monica, I hear you! We are only five months into this wonderful new journey with grandchildren, and it has just lifted ALL of our spirits in our family. I spend quite a bit of time with the dear babies...it takes me back over 30 years, when I was a young mom, but it is different now. I can spend time and then go home again. One forgets how intensive is the work of child raising and I am glad I did that when I was younger.
Coopershawk, I can give you some info, but do not know how long I will be on this particular treatment regime. We were following guidelines for 'relapse' that basically said that if your 'M' protein doubles, over a few months, or if the 'M' protein gets up to 10 (1 in the US), this could be considered a relapse. Both of those parameters happened between June and September 2014. I am a 'secretor' so the 'M' protein could be used. The SFLC ratio was similarly high to begin with...from a ratio of 12 (normal is 0.26 - 1.65), lambda normal, and kappa high at 77 and now down to 13 (normal is 3.3 - 19.4). To say that we are pleased with the results is an understatement. Hope that helps...caught the myeloma early this time!
Libby C, Enjoy your fiftieth! That seemed a special year...you could look back on five decades, and have more to look forward to also! My children were in their late teens, still at home, and we had a nice celebration together! Lots of friends that year were also passing that milestone....
I agree with you that it is difficult to read sometimes of the problems people are encountering. We are known as 'Warriors' for a reason. If I can't bear to read, or post, it's not because I don't care. I just don't know what to say, actually. Any advice I give may be outdated, or beyond my limited knowledge of this dreadful disease. Encouraging research, doing advocacy work, being in a local support group, is all I can think of to do sometimes. Thing are gradually improving for many, but not for all, unfortunately.
I hope that the GVRD is not to difficult a treatment to undergo, and that you enjoy many more years too.
Eric, thanks for posting in with your experiences on the Revlimid/Dex 'doublet'. We are also on the same treatment regime, as we have found out previously. Hope you are enjoying summer also.
Congrats Nancy,
I too have reached the 6 year milestone, 77 months and counting. I am jealous though, I only have one grandchild, not two! Her name is Reese and was born on my birthday a year ago. How about that!!
Hope you continue to stay active and keep the MM at bay!
Ron
Congrats Nancy S! You are one year ahead of me. That first paragraph describes my Summer of 2010. That back pain is the worst. Great to read about all the personal milestones you are experiencing. Thanks for continuing to write about your experiences.
Nice to hear from you Mark and Ron. Mark, you have then reached the five year time...good for you. I know from reading your posts that you have been thru a lot in your quest for better health, and you did arrive in a good space.
Ron, isn't it interesting that the 6 year people here all reached this from differing treatment plans? (eg. Stem cell transplant or not, Allo transplant, clinical trials, Imids', proteasome inhibitors, having continuous chemotherapy, taking a break from chemotherapy?) To me this shows that there are many ways of treating myeloma...hope we can compare notes as we go along and next year too! Congrats on having your little grand daughter in your life , and hope you are enjoying being a 'Grand Dad'!
Eric
Thank you for your comments. My husband starts his Rev today - like you 3 weeks on and dex (but his dex is split into two doses). Mark had a total of 16 treatments of Velcade, 1 cyclophosphamide (not sure of spelling), 10 days of injections to grow more stem cells, stem cell harvest and then, July 12, 2012 chemo at 10 times normal and then July 13, 2012 his stem cell transplant. So he has gone 4 days past 3 years without any drugs. He has no bone involvement - we found his MM quite by chance after taking our blood pressure in the grocery store..one thing led our GP to another and then to Dr. A. Benger, Hematologist at Juravinski Hospital in Hamilton, Ontario.
So, now we start a new phase - fingers crossed it works well for my husband (Mark). His intention is to continue working... - so one day at a time.
Hi Brenda, sound like you are getting good medical care in Hamllton at the Juravinski centre. I was also off chemo drugs for over three years, and I think that gave me a chance to get stronger. Have also had a stem cell transplant, and Velcade induction (not with Cytoxan though). The latest rounds of chemo (which is at the same dosage of Eric's) have been successful in putting me back close to a remission again. I think that in Canada we have had similar treatments across the country, since many of our provinces have the same cancer drugs on the provincial formularies. (I live in Alberta.) Did you know that Pomalyst is now approved in 8 provinces, and that is the next drug in the immunomodulatory series, from Revlimid? The first drug in that series is Thalomid (thalidomide). 'Pom' would also be available for relapsed/refractory patients if they needed to try another drug, so we do have options. We always need to do more 'advocacy' about inquiring about newer drugs which have different mechanisms of action though. That's democracy, I guess! Am thinking of more proteasome inhibitors such as Kyprolis, and also am interested in the newer monoclonal antibodies, such as Daratumumab, Elotuzumab, which currently are available here from clinical trials.
Best wishes to your husband and hope that he soon gets back into a remission, or close to that.
This is for Eric:
Can you tell me if you had side effects in the beginning of your Rev regimen - Mark is having cramping (some in his legs but more in his hands) also says his body is trembling, on the inside. I am hoping that these will disappear after a couple of weeks of treatment. Thanks for any information
Thank you for your column. My father in law was just diagnosed with multiple myeloma two weeks ago in Calgary, and your description back in 2009 relates closely to his own (extreme back pain).
We are just starting our journey at this stage. Overwhelmed with brochures, unfamiliar medical terminology and drugs all the while we are processing how he is now a cancer patient.
I am grateful to find a site with someone writing with years to talk about (weddings, trips, etc.) following treatment, rather than months. We are also truly grateful for God's grace every single day. Thanks again Nancy for sharing your words with us!
Hi Kim Bee, Sorry to hear about your father-in-law's dx and that he is experiencing extreme bone pain. I hope that as his treatments start that will lessen and the the myeloma will be brought under control also.
I have had excellent medical care at the Tom Baker Cancer Centre and that is one reason why I am doing so well now. Also, the forum here is a great resource for patients and caregivers asking questions and getting advice from others too. Best wishes to all of you!
I can relate to you. The summer of 2009 for me was awful. Having been diagnosed with Multiple Myeloma in February of 2009, which caused my kidneys to fail, I had dialysis 3 times a week and chemo 2 times. Fortunately in August of 2009 I was able to come off dialysis. I continue with chemo 1 day a week, three weeks out of 4. The good news is back in 2009 the life expectancy was only 5 years. Well we are still here and the life expectancy has been increased over the years and hopefully will continue. There are so many new chemo drugs but I remain stable with Velcade and Dex. With the damaged kidneys my doctors are cautious with newer drugs. Good luck to you.
Good luck to you too, Marge, and thanks for sharing your experiences with myeloma. It sounds like you take good care of yourself! The outlooks are improving over time for us patients, and it's great to be here to follow the progress too, and to enjoy life.
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