Myeloma, Party Of Two: Resolutions
The ball has dropped. Confetti has fallen. And another year has commenced. We are in 2019 now, but until last week, Daniel and I were still awaiting resolutions to 2018 problems.
In my last column before Thanksgiving, I shared that my husband Daniel would be starting maintenance therapy for his myeloma. One of the goals of the treatment would be to help him achieve a partial or complete remission, which had eluded us after his autologous stem cell transplant in October. He was supposed to start the maintenance right away.
We met with Daniel’s myeloma specialist and discussed several maintenance options. We agreed that Daniel’s treatment needed to be more aggressive than the typical plan, which for many means just taking Revlimid (lenalidomide).
Daniel’s specialist recommended treatment with Empliciti (elotuzumab), Revlimid, and dexamethasone (Decadron). We are mindful that Revlimid is what gave Daniel pulmonary emboli over the summer in 2018, so his specialist recommended that Daniel continue with the blood thinner Lovenox (enoxaparin), which he takes two times a day, until such time that he is taken off of Revlimid. The specialist also recommended lowering the Revlimid dose from the initial dose given during induction therapy, to lessen the risk of blood clots.
Having read Beacon readers’ suggestions that Daniel consider Venclexta (venetoclax), we asked the specialist about this drug as a potential agent in Daniel’s maintenance therapy. The specialist wanted to hold this drug as an option for us later on down the line, since in her opinion, with each subsequent line of therapy, Empliciti becomes less effective. If Daniel’s myeloma progresses while on this protocol, they will probably put him on Venclexta instead, because it is a drug that could benefit Daniel both now and later after he has had other lines of therapy. It makes sense to use up the therapy options now that aren’t as likely to work later on. When the patient is 45 years old, you definitely need to think about treatment as a marathon, not a sprint.
The Empliciti infusions are more than six hours long. They can only be given after labs have been taken, analyzed, and discussed in fast-track appointments. We were told to plan to be at the cancer center well into the evening on treatment days.
I have a friend who used to get her lymphoma treatments at the same cancer center, and her six-hour treatments meant that she arrived at the hospital before 7 am for her labs and fast track visits, waited the usual two or more hours to get a bed in the infusion center, and then wasn’t through with her chemotherapy until 10 or 11 pm at night. I’m hoping for the best, and expecting the worst when it comes to the toll that this treatment is going to take.
During induction therapy, the weekly infusions were very stressful because we were up at the hospital all day, most of the time spent waiting, which is hard to do when you don’t feel well and you’ve been sitting in the same uncomfortable seat two hours past your designated appointment time. I dealt with it then by thinking this was only temporary. It’s easier to know that you can get through something unpleasant if it is for a finite period of time. But this is forever (or until the drugs stop working, which of course is an option that no one wants to explore).
Both Daniel and I are still working too. Daniel used up all his short-term disability time, so he is back at the office and trying to juggle his weekly trips to the cancer center with his work. I am doing the same, since I always accompany him to the doctor and want to be there for support. I find that a lot of my time is also spent trying to correct and arrange his schedule, since the cancer center’s priority is not to group Daniel’s multiple appointments on one day, but rather to get him plugged into whichever slot has an opening.
With the plan of care decided, we were all ready to start the recommended maintenance therapy by December 5th, but there were other plans in store for us.
Daniel had a persistent cough. This cough led to x-rays, which indicated pneumonia. This led to CT scans with contrast dye, PET scans, and labs to rule out fungal, viral, and bacterial types of infectious disease. Daniel’s pneumonia meant a delay in his treatment. That would’ve been bad enough, but based upon the notes documented on his PET scan report, there were nodules on the lungs and cysts on the adrenal glands that required further testing to rule out cancerous or myeloma-related disease. Before we could meet with the specialist to review the findings, Daniel also had to undergo a bronchoscopy. It involved a tube being placed down into Daniel’s lungs and the surgical removal of bronchial material so that it could be tested for pneumatic and cancerous infections.
With all the tests concluded, we met with the myeloma specialist again last week. To say that I’ve been an anxious mess over December would have been an understatement. Between the tests that we didn’t have clarification on yet, my fears of some plasmacytoma or malignant cyst developing on his adrenal glands, and my worries that Daniel would be hurt during the awful-sounding bronchoscopy procedure, December was a very tough month.
Last week we learned that all the test results came back negative, and that his pneumonia was probably a viral agent that they didn’t have a test for. The nodules weren’t concerning to his specialist, since Daniel’s cough had dramatically improved, his labs were stable, and he seemed otherwise healthy since his last visit. The adrenal cysts were most likely benign, the specialist said, but they would do another CT scan and compare it with the other three that he has had over the last six weeks. Assuming no new growth had occurred, Daniel will start his maintenance treatment this week.
For Daniel and his specialist, it was an anti-climactic, casual appointment, like any other. For me, it was not. Was I relieved? Of course. But, just like that, we were on to the next thing. It was time to sweep a month of worry under the rug and get ready for what comes next. No venting. No release. Just, “next, please.” There are times when I think that I’m just not cut out for this. I’m simply too attached.
If I had any resolution for 2019, it would be to find a way to disconnect from myeloma.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 and active (symptomatic) multiple myeloma in 2018. You can view a list of Tabitha's previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thank you for sharing your update. I too was on Lovenox following a pulmonary embolism. That was 3 years ago. I am still on Revlimid, but quickly got fed up with the two injections a day, and all the associated bruising. I worked with my doctor and switched to Xarelto (rivaroxaban), and find it much easier to cope with and have had no issues. I just have be careful to switch back to Lovenox prior to any procedure such as a bone marrow biopsy.
Dear Tabitha, what an awful time you are having. I am so sorry for you both and thank you for writing such a moving and informative column. I can really identify with your comments about being relieved but immediately onto the next thing. The breaks from worrying seem very short once you have this diagnosis, but for you they’re non-existent right now. Sending love and good wishes.
My husband and I have anxiously awaited your latest column since reading the one in the fall. What Daniel and you are going through is tough even by myeloma standards. Daniel’s proposed treatment is exactly what my husband has been on since his stem cell transplant in August 2015 including the Lovenox. My husband did achieve a complete response following his stem cell transplant and has been minimal residual disease negative for three years. We hope this line of treatment is beneficial for Daniel and he achieves the best possible response. On a side note, I do not think you are too attached. When you or a loved one is diagnosed with multiple myeloma, you enter a different universe, an alternate reality, a new “normal.” We have had to make lots of changes to our lifestyle, our travel plans, and our interactions with others. We have to make quick adjustments to our plans when side effects sideline my husband for a morning or afternoon. No, you are not too attached - this is your new normal.
Dear Tabitha, I am sorry to hear about the stressful and time consuming times you are having now. I hope that things are improving for you. The infusion times and waiting for blood tests do sounds like they take a long stretch of time. I am sure that you take some things to do, such as reading books or looking at a computer, or crafts, etc. Hopefully you both can work some walking or other exercise into your day too. Best wishes!
Myeloma is tough on us, caregivers. I have been recommended therapy, and despite it being a year, I find it tough to cope. I read into every symptom or non symptom and deprive myself of rest. So, I hear you, Tabitha. I am equally attached.
I've been thinking about you and hoping things were improving. It is good news to hear that the pneumonia wasn't life threatening, but I'm so sorry that this has been so rough for you both. I pray that the maintenance therapy works for Daniel and that you can resume a somewhat "normal" life, if any of this is "normal." You are an excellent caregiver, Tabitha.
Good Morning Tabatha, I have just read your account of what you and Daniel are going through since your last post. You are an amazing care giver and advocate for your column. I do recognize how hard this must be for you as well as Daniel. Stay attached, as this is so helpful for Daniel. I pray that the present treatment he is going through right now will give him the best outcome he needs for this unpredictable cancer we have.
I have been in remission since a 2012 stem cell transplant, and now my M protein is peaking back up, so of course I am getting anxious of what will be ahead for me. I have been so fortunate and thankful to have been in remission for almost 7 years. All the best to you both, and I will be praying.
Tabitha,
I am glad to hear that you both are persevering valiantly through this horrible disease process. I can relate as a caregiver when for a short time there is some reprieve. It never does seem to last long because you are on to the next test result.
You are a caregiver and by that definition, you are attached. There is no separation from that.
Hang in there. So happy to hear from you.
To an improved 2019!
Jamie
Hi Tabitha,
I am sending prayers and good thoughts your way. I'm sorry Daniel's treatment involves so many moving parts. I know as a general rule people respond best to "niceness," but have you considered respectfully but firmly explaining that scheduling his various appointments when the hospital has openings causes major issues for a younger patient and caregiver, who are both also trying to maintain a work life? It may not work, but then again you never know. Sometimes schedulers get so wrapped up in the demands of their jobs, they forget they're making plans for real people, not widgets!
Tabitha and Daniel,
You have been so much in my thoughts and prayers since reading about your struggles. Since Daniel had been “smoldering” for so long, I was surprised at the trouble he’s had with treatments. I hope you know there are many of us out here with you two on our minds and in our prayers. Hoping 2019 will be a better year for both of you.
❤️ Julia
Tabitha,
I don’t know if this will help, but I can tell you living with myeloma is the continual roller coaster. I’m not going to go thru my course of relapses and complications; suffice it to say I find the hardest part of living with this disease is the unpredictability and the knowledge that I will never be cured. One month I seeem to be doing ok, the next I have a life-threatening complication from the medication, or there are signs of relapse. So there is constant worry. It is particularly hard to be positive when you are ill and in pain. Planning is impossible, and I’ve always been a planner, because you never know what is around the corner. I have really had to change the whole way I live my life to achieve some peace.
Now I try to enjoy every moment of every day. My kids are spread around geographically, and I try to see them as much as I can. However, after the first time I ended up in the hospital instead of catching an airplane – I literally had my suitcase in the trunk when I went down – I now always purchase travel insurance. It has become a bit of a family joke that I seem to always get sick en route to or with the middle child. I can't work anymore, but I try to volunteer and help others when I can. When I’m not feeling well, I sit on my lanai and watch the birds and the beauty around me. I appreciate the stars at night when I can’t sleep from the steroids. I meditate, it helps control the worry and also helps me get to sleep so I don’t toss and turn all night. I got a puppy after the stem cell transplant, she is good company and stays by my side often when I don’t feel well. She also makes me get up and walk even when I don’t want to, because she has to go out.
With each downturn, I tend to lose function, when things stabilize I try to walk and swim to get some stamina back, as I know I am better if I can keep active. Like you, I would love to NOT live with myeloma. But we do still live, and so the question becomes how can you live with the disease as either patient or caregiver and live every moment to the max? I can’t answer that for you, I can tell you my ex husband couldn’t deal with it. When I tried to talk about my illness, he would just brush it off and say you are going to be fine, your family all lives forever. I don’t know what will work for you to make this better. I guess each of us has to find our own strength and solace. I do know it is really hard for friends and more distant family to understand. They empathize, but this disease goes on and on. So you have to find peace within.
I hope Daniel does well (and you don’t need a complete remission to do well, I know a woman who has never had better than a partial remission who is 22 years out), but regardless, I hope you find peace and both enjoy every moment of every day that you have together. Best wishes always
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