The Final Mile: The Decision
I find the Myeloma Beacon patient columns and forum very informative and useful, but they are surprisingly short on what comes with relapse when there are no more realistic treatment options. I’m facing that situation now and thought I’d chronicle my journey along this next part of the road in a regular column, in hopes that it will be of use to others.
I am 81 years old, diagnosed in June 2017, at age 79, when I sneezed and broke two ribs. I went on a reduced-dose Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone regimen (“RVD lite”). The treatment caused neuropathy in my feet and added a rare auditory neuropathy that muffles my hearing, so it was discontinued after a few months. My hearing remains impaired and my feet numb.
While on RVD lite, my lambda free light chain marker went from an initial level of 269 down to 29. The high end of the normal range is 26, but I was told that up to 50 is acceptable at my age. In August 2018 my lambda marker began creeping up – 59, 85, 105 – and in October I went off RVD lite and started Kyprolis (carfilzomib), Pomalyst (pomalidomide, Imnovid), and dexamethasone.
The new treatment regimen took my lambda free light chain level down to 91 and then 86, but then back up to 100. The side effects, however, included heart issues with dangerously high blood pressure spikes, which at one point caused me to pass out and convulse. I should mention that I have one coronary artery stent, which is about 17 years old, and I also have mild COPD (chronic obstructive pulmonary disease). And arthritis. (I am an old man.)
I also received monthly infusions of zoledronic acid (Zometa) to strengthen my bones. Those eventually were switched to an infusion every three months.
So next was Empliciti (elotuzumab) and dex at the end of December 2018. That regimen initially knocked my lambda marker down to 92, but in March of this year it shot up to 191. The myeloma was eating it for lunch!
So in April I switched to Darzalex (daratumumab), Velcade, and dex and my lambda free light chain level went down to 89. Yay! It was worth the fatigue, shortness of breath, and the limited energy. Treatment was interrupted, however, by a bout of pneumonia, which intravenous antibiotics knocked out in a few weeks.
When I resumed the Darzalex regimen in late May, my lambda level was up to 230, but it got knocked back down to 160. My good reaction made me a prime candidate for a shorter infusion time, but that sent my normally low blood pressure up, so I stayed on what was basically an all-day infusion once every week, going to once every two weeks in mid-June.
After reaching 160 in June, my lambda level went up to 313 in early July, 363 in late July, and an all-time high of 498 in early August. My M-spike remained stable.
I was then put on a “last-ditch” regimen consisting of an injection of Velcade, ten 50 mg capsules of cyclophosphamide (Cytoxan), and five 4 mg dexamethasone tablets, all administered once every week. This initially brought the lambda free light chain level down from 498 to 411, but four weeks later the numbers were only down another ten points to 401. The latest markers are not yet in.
The downside of this regimen has been that the side effects have gotten worse each week. Most recently, my systolic blood press reading went up to a dangerously high 178, and my pulse rate was 140, twice my normal level, for several hours. There’s also been fatigue, swollen ankles, loss of appetite, shortness of breath, constipation and diarrhea, and the usual dexamethasone crash.
So I’ve chosen to discontinue treatment. I met with my oncology team last week, and they are okay with my decision to choose quality of life over the increasing misery of treatment. They already had mentioned hospice at one of my previous appointments, although I think it’s way too early for that.
I often say that I don’t know what’s the cancer, what’s the treatment, what’s just being an old man, and what’s a combination of all three. There may be clinical trials I could try, but, frankly, those seem like too much work with record-keeping and uncertainty.
I am 31 years sober and have learned to live one day at a time and to find the joy in that day. And I don’t feel any different today than I did yesterday or last week. I’m hoping, frankly, that by stopping treatment I’ll feel better! At least for a while.
We live in a rural piece of the Sonoran Desert outside of Tucson, Arizona, in a double-wide manufactured home on a one and a quarter acre (tenth of a hectare) lot. Our front half is natural desert, and the back half is fenced and an oasis with gardens. Both are habitat for a wide variety of critters, and I enjoy and learn from them. Just a few weeks ago my spouse, helpmate, and best friend Kaitlin called me outside to witness Mom and Pop great horned owls teaching their two offspring how to get around in a big mesquite tree.
The joy is there for the taking if we are open to it. I read a lot, although my energy for even that is down some as a result of my last treatment regimen and teary eyes. I write a bit. And I remain filled with gratitude for my life.
One day at a time.
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The quotation for today's column is from Joseph Campbell (1904-1987), an American author and academic, who said: “We cannot cure the world of sorrows, but we can choose to live in joy.”
Albert Vetere Lannon is a multiple myeloma patient and a new columnist for The Beacon. He lives in Tucson, Arizona.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Editors’ Note: If you are thinking about commenting on Albert’s column, please recognize that he and his medical team have given a great deal of thought to the treatment decision he has reached. As Albert has told us: “Everyone’s reaction to myeloma and its treatment is different. I have been happy with my oncology team, which truly has listened to me and been willing to negotiate. At this point, I am not really interested in hearing about other possible treatment regimens, clinical trials, or medical groups. There comes a time when one says, simply, ‘It’s done.’” We would appreciate if you would respect Albert’s wishes in any comments you make in regard to his column.
Albert, you’re a brave man, and most admirable in my opinion to share with us. Our lives are just smidgens of time compared to infinity.
On this very valuable Myeloma Beacon, we tend to get optimism, which is a potent and important viewpoint; however, there are always two sides to every coin. Please gather the strength to write again.
Your treatments are very similar to what my husband had. He too was relapsed with no treatment options left. He was diagnosed in 2007 at 50 years old. He went through many years of treatments with every new medication and treatment plan as they were discovered. He too enjoyed life to the fullest and chose to do as much as he could every day to enjoy his life. Ultimately because of all the different treatments and the radiation he had to receive several different times, he developed a secondary blood cancer, chronic myeloid leukaemia (CML), and it is what ultimately ended his life. He often lamented about what he thought his last months and days on earth would be like, with the uncertainty very hard for him to come to terms with. He was blessed to pass very quickly the day before hospice was supposed to be started.
Please know that you never know what each day will bring, but you have to enjoy it like it's your last one and not worry about what tomorrow may bring. May you and your wife/best friend find peace in this process. My husband and I were best friends since our early 20s, and moving on without him has been without a doubt one of the hardest things I've ever had to do in my life. May you have a long and peaceful journey through this together.
Best wishes to you and your family, Albert. Live each day, find the joy in things and people around you. I love your spirit. Take care.
Thank you for publishing this as this is what my husband is thinking too. Yettie (my husband) was diagnosed at the age of 34, Stage 3, without renal issues. It took 4 years to diagnose as we were in and out with severe back pain and ran every test imaginable and they just ended up giving him a pain shot in butt in the hallway and sent us home. It finally took pneumonia for them to look closer and deeper as they have never met a patient that young so tests where overlooked (I guess).
He is 40 now, new oncologist, and now a very bad outlook. My husband was the 1% who got osteonecrosis from the biophosphates. He was taken off after 4 years as he pulled a very big piece of dead bone from his jaw himself. We were warned, but they also knew his teeth were awful from the get go and did not push the issue with knowing how bad his teeth were. 1% right? They also spoke to us about early stem cell transplant but financially and supportively with 6 kids it was completely out due to our situation. They showed no urgency to collect when they got his M-spike down to 0.6. Again, no urgency, now his bones have been deteriorating. He has has done Revlimid, Velcade, and dexamethasone, and Revlimid, Ninlaro, and dexamethasone. Now we have been on Darzalex for 1 year and he has good numbers as his specialists say the diease is refractory and we have run out of options.
My husband is in so much bone pain especially in his sternum that now we have oxygen and a cardiologist in the mix. We are not certain what will happen when you can't take biophosphates and the stem cell transplant that you have worked all year for may not happen.
He is fully aware there are more medications but between lack of communication as the oncologists and his specialists are not on same page with him.
So if my Yettie takes the same road we can openly talk to each other about it thru the journey.
Prayers and hugs sir ❤
He is so tired of the lack of communication between the doctors and us.
As it stands, my husband given the option has decided to let nature take its course.
Dear Albert, thanks for writing your column and sharing your experiences. I can’t even imagine how it must have been to have had so many treatments and side effects. I love the sound of your home and hope that the young owls do well. All the best to you, Albert.
Thank you for sharing this reality of multiple myeloma. I was diagnosed in 2007 after several years of anemia and am now on my tenth treatment. This is a discussion I know is coming too. I'm grateful for information that helps me make a 'quality of life' decision. What a special spouse you have to support a decision that affects her so deeply. That is love.
Jan
Albert, thanks for telling us the journey of your multiple myeloma. I hope that you and your wife have a lot more time enjoying your desert oasis. How nice to have a pair of great horned owls in your garden! We have heard a great horned owl hooting in the woods behind our house about a month ago.
I enjoyed the quote about living with joy.
Thank you for sharing your journey. Your spirit shines through in all of it. Don't be wary of hospice, although it is a scary word. Hospice care is really there to make your quality of life the best it can be without consideration for treating your disease. It is not "giving up". Wishing you the best, Heather
My "one day at a time" has been renamed to "life is a sunrise". I sit each morning and watch the sun come up, drink my coffee, and hope that I will make the best of the day I have been given. That is all any of us can do: enjoy the day. I hope you continue to share your journey. Our hearts are with you. JoAnn B
I have cycled through six drugs and a double transplant over 15 years of partial and complete remission, but not getting treatment was an option right from the start, having family members dying of myeloma. I stick to one issue: What miraculous accomplishments if a major new treatment came along? Also: two grandchildren, and charitable donations. So what more can I expect?
Dear Albert and Kaitlin,
How brave, and caring for us, to write of your present place in the journey we myeloma patients and our loved ones share.
I too have wished for more personal information from patients in the same place as you, in order to have an idea of what to expect, so thank you very much.
Blessed day, filled with love, critters, and beautiful surroundings,
Mary Helen Short
Thank you Albert for sharing your extraordinary story. You have amazing courage and we appreciate learning of your treatments and struggles. All of us know we will get to the point where you are regarding treatment versus quality of life. I pray that we will be as brave as you and Kaitlin.
Thank you, thank you, for this column. I just started reading "The First Cell and the Human Costs of Pursuing Cancer to the Last" by Azra Raza, and she wrote: "Dying is not a failure. Denying death is." Thank you for articulating that with your choice.
I'll add my thanks to the rest of those who've responded. As with all of us here, it is likely that I will someday begin my last mile with myeloma. I've been looking for role models in how to handle the situation ever since being diagnosed. Thanks for providing one, Albert.
By the way, my dad lives in Green Valley and my sister and her family are in Patagonia. I'm very familiar with the area you live in. It's a beautiful place.
Albert, you are a brave man. My husband was diagnosed in August 2014 and has gone through a stem cell transplant and is now in remission while taking maintenance therapy weekly. We are so thankful for the time we get together, and your time with your wife Kaitlin sounds glorious! Thank you so much for sharing your journey, and we are cheering you on for many more days of enjoyment. May you be surrounded with peace.
Albert, you are an inspiration. My own journey with multiple myeloma started 5 years ago, but I have been fortunate enough to remain in remission thus far. I know one day my time will come, and I only hope that I can be as brave as you. May God bless you and your wife on this journey.
Albert, thank you so much for being so transparent and sharing here. Myeloma is such a diverse cancer. I think each one of us has a different story and experience. God bless the researchers who have such a difficult job of trying to find a cure (cures) and ways of treating us. It is so complicated! Each day we're alive gives us hope of finding something. May God give you lots more time!
Thanks so much for your willingness to chronicle this next lap around the “Multiple Myeloma Track of Life.”
Aloha Albert,
Your story is exactly what is most awesome about The Beacon! Thank you so very much for sharing how you feel and what your experiences are. We are all going to pass on someday. All we get to choose is what we do between now and then. Seizing the day can be as simple as a smile or as complex as climbing Mt. Everest. May we all be able to find our "owls".
Try to keep your spirits up as much as possible. Your writing helps far more people than you will ever know!
Much Aloha!
Tom Shell
I want to thank everyone for their generous comments. You made me feel that what I have to share is worthwhile, that I can end my days being of use. And some of your comments are so eloquent that I plan to use them as closing quotes for my columns.
Unsolicited free plug: I want to thank The Myeloma Beacon for taking the risk in publishing my end-of-life story as it unfolds. As a fixed-income senior, I can't donate large amounts, but I was happy to make a small recurring monthly contribution to keeping The Beacon going long before I decided to stop treatment or write about it. I hope others will consider doing the same.
Albert,
That's a brave and lovely thing you have done in sharing your story. Many of us remember Beacon columnists who went suddenly. What you are doing is really choosing a conscious death. We are all going to die, there's no way out of that, but choosing to do it with dignity is beautiful.
We lived in Tucson in the early 70's and spent many times hiking the Sonoran desert and loving the beauty of the desert.
I found your article after researching my husband’s condition. He was diagnosed with multiple myeloma a little over five years ago. He’s 77. RVD worked for four years. Now PVD, which started off great, but now the side effects keep piling up and this on top of cardiac issues. The side effects sound identical to yours on Pomalyst. He’s slept virtually day and night for the past ten days, and I suspect at his next visit with his myeloma specialist in three days, we might get the kind of news that you did (treatment has stopped working). We’ll soon know. I’m not sure what his decision will be when the time comes, but I’m tired of seeing him being poisoned in an effort to fight something that always ends up winning.
Oh Ruth, my heart goes out to you and your husband. I shared your comment with my mate and she said some profound things. Like she'd rather have me more my old self, as I am becoming, for less time than the me I had become, trapped in the treatment, for longer. It's something you and your spouse ought to talk about before seeing the oncologist. It really needs to be a mutual decision since it affects you both on so many levels.
Thank you for sharing your inspiring story, Albert.
I am at a similar junction in my myeloma journey, and experiencing your calm and sunny perspective has been extremely helpful to me.
I hope you and your mate enjoy many, many wonderful days to come.
Albert, my very best wishes to you and your wife on your decision.
Dear Albert,
You write with such openness and willingness to share with others. Thank you so much for this. I think you have helped a lot of us with your column. It's good to be reminded of how important each day is. I appreciated that.
Very best wishes Albert. Thank you for your candid article.
Dear Albert,
Thank you so much for sharing your experience. Your home sounds beautiful. Your courage is an inspiration to me as I follow my multiple myeloma path.
May you and your best friend have many joyful days ahead.
Best,
Luz
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