My oncologist has told me that I am going to need to begin treatment within the next few months and has referred me to a specialist to develop a treatment plan.
I’ve seen a lot of information on the Internet about various treatment options (such as drugs, chemotherapy, stem cell transplant, etc.), but I haven’t seen much about what daily life is like as you are going through the treatment.
For example - how many months is the initial treatment? How many times a week do you go to therapy? How do you feel, physically, as you go through therapy? Do people continue to work during therapy? Is it possible to go on short trips while undergoing therapy? In general, how does treatment affect one’s quality of life? And once you start therapy, will you be on therapy (including maintenance) for the rest of your life?
Basically, I’d like to have an idea of what to expect before I start treatment.
Thanks in advance.
Forums
8 posts
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tm648 - Name: tm648
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/30/2015
- Age at diagnosis: 71
Re: What is daily life like during treatment?
That is a lot to talk about and would be difficult to address in a forum post. Is there a myeloma support group in your area? It might be better to meet face to face with others who have myeloma and have gone through initial treatment.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: What is daily life like during treatment?
Dear tm648,
I had found a lot of detailed stem cell transplant experiences posted in very helpful threads, but
I was indirectly asking similar questions in mid-December before starting my induction chemo and I did get a lot of response from others about what to expect during my treatment, all of which can be found in my RVD induction therapy experience thread, in which I have detailed my daily experience since December 17, 2014.
Everybody reacts differently, but I have also read that sometimes the recommended doses were too high, or the treatment started only on two drugs and was ineffective for a few months. In my case, my oncologist optimized my dosage at the last minute and changed the 'off the shelf' oncology pharmacy's doses. This may have made a huge difference for me in that I have tolerated the treatment very well and still have had excellent response to it.
You would find some related information in Dr. Santiago's thread, "Recently diagnosed with multiple myeloma", started Nov 25, 2014, and Peggyb's "How did you decide whether to have a SCT or not?", started Dec 31, 2014.
My RVD induction therapy doses:
I sincerely hope this helps. Best of luck with a successful and tolerable treatment.
K_Shash
I had found a lot of detailed stem cell transplant experiences posted in very helpful threads, but
I was indirectly asking similar questions in mid-December before starting my induction chemo and I did get a lot of response from others about what to expect during my treatment, all of which can be found in my RVD induction therapy experience thread, in which I have detailed my daily experience since December 17, 2014.
Everybody reacts differently, but I have also read that sometimes the recommended doses were too high, or the treatment started only on two drugs and was ineffective for a few months. In my case, my oncologist optimized my dosage at the last minute and changed the 'off the shelf' oncology pharmacy's doses. This may have made a huge difference for me in that I have tolerated the treatment very well and still have had excellent response to it.
You would find some related information in Dr. Santiago's thread, "Recently diagnosed with multiple myeloma", started Nov 25, 2014, and Peggyb's "How did you decide whether to have a SCT or not?", started Dec 31, 2014.
My RVD induction therapy doses:
- Revlimid 15 mg every day before bedtime, 3 weeks on, one week off.
- Dexamethasone (Decadron) 20 mg on the day of the Velcade shot
- Velcade 2 mg (proportionate to your size, surface area, etc) Wednesday afternoon
- I need to take a Benadryl (50 mg) the day of the Velcade - dex
- I am already pretty hyper. I have to avoid sugar on the day of and the day after I take dex
- Take dex with a big meal / breakfast
- Revlimid makes me drowsy
- Insist on the 'air bubble' in the subcutaneous Velcade syringe to avoid burning rash near the needle mark
- Continue all the exercises and physical activities, except on the day of and the day after the dex / Velcade, when I have to slow down, usually back to normal stamina on the second or third day after the dex/Velcade
I sincerely hope this helps. Best of luck with a successful and tolerable treatment.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: What is daily life like during treatment?
As K-Sash states, people respond differently to the treatment regimens that they are on. There are so many possibilities of treatments that you might be started on that it is hard to respond specifically to your questions. You might ask your oncologist what s/he is thinking of starting you on and then people can respond more directly to your questions.
My induction regimen was 15 mg of Revlimid for 21 days on and 7 days off, 40 mg of dexamethasone once a week, and a Zometa infusion every 4 weeks. I had 8 cycles of this regimen before getting ready to have a stem cell transplant. Some people do as few as 3 cycles and some stay on the regimen instead of having a transplant.
Once the drugs started to have an effect on my cancer I began to feel a lot better than before I started. I had been quite anemic, so the improvement in my hemoglobin level made a huge difference in how I felt. I worked as a physical therapist full time the entire time from diagnosis until I retired 6 years later. I only took time off from work because my left humerus fractured and for the stem cell transplant.
The dexamethasone was hard to manage because I would be hyper for a couple of days and then crash. I took it on Thursday so that I would be hyper on Friday, crash on Sunday, and be back to normal by Monday. I was more fatigued than usual, but it was manageable.
I saw my doctor once a month while on induction therapy and had my Zometa infusion on the same day. Both Revlimid and dexamethasone are in pill form, so that was easy to do. I took some trips during treatment, but just scheduled them around when I would need to go for doctor appointments. I did get more fatigued on these trips and had to allow for that in my activities.
It depends on how you respond to treatment and what you and your doctor decide whether you will be on some sort of treatment regimen the rest of your life. I was drug free for almost 3 years post autologous stem cell transplant (ASCT). I have been back on treatment now for 2 years with 10 mg of Revlimid 21 days on /7 days off, 20 mg of dex once a week, and a Zometa infusion every 6 weeks. My M-spike is stable at 0.6 g/dl (6 g/l) with this regimen. I have done some extensive traveling in the US and Europe while on this regimen with no problems. Life does go on.
What was interesting was that I only developed a respiratory infection one time prior to my ASCT from the time of diagnosis almost 2 years previously. Everyone around me was getting sick with colds and the flu, but not me.
I hope this helps,
Nancy in Phila
My induction regimen was 15 mg of Revlimid for 21 days on and 7 days off, 40 mg of dexamethasone once a week, and a Zometa infusion every 4 weeks. I had 8 cycles of this regimen before getting ready to have a stem cell transplant. Some people do as few as 3 cycles and some stay on the regimen instead of having a transplant.
Once the drugs started to have an effect on my cancer I began to feel a lot better than before I started. I had been quite anemic, so the improvement in my hemoglobin level made a huge difference in how I felt. I worked as a physical therapist full time the entire time from diagnosis until I retired 6 years later. I only took time off from work because my left humerus fractured and for the stem cell transplant.
The dexamethasone was hard to manage because I would be hyper for a couple of days and then crash. I took it on Thursday so that I would be hyper on Friday, crash on Sunday, and be back to normal by Monday. I was more fatigued than usual, but it was manageable.
I saw my doctor once a month while on induction therapy and had my Zometa infusion on the same day. Both Revlimid and dexamethasone are in pill form, so that was easy to do. I took some trips during treatment, but just scheduled them around when I would need to go for doctor appointments. I did get more fatigued on these trips and had to allow for that in my activities.
It depends on how you respond to treatment and what you and your doctor decide whether you will be on some sort of treatment regimen the rest of your life. I was drug free for almost 3 years post autologous stem cell transplant (ASCT). I have been back on treatment now for 2 years with 10 mg of Revlimid 21 days on /7 days off, 20 mg of dex once a week, and a Zometa infusion every 6 weeks. My M-spike is stable at 0.6 g/dl (6 g/l) with this regimen. I have done some extensive traveling in the US and Europe while on this regimen with no problems. Life does go on.
What was interesting was that I only developed a respiratory infection one time prior to my ASCT from the time of diagnosis almost 2 years previously. Everyone around me was getting sick with colds and the flu, but not me.
I hope this helps,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: What is daily life like during treatment?
Hello tm648. Here is my story of daily life:
I had surgery on my femur in December 2013 and started treatment a month later. Last winter was horrible weather here in the North, so my activities were limited by that as well. My life followed this predictable pattern: Every Tuesday for 22 weeks I received the chemo combo "CyBorD", meaning Cytoxan (cyclophosphamide), bortezomib (Velcade), and dexamethasone. The dex gave me energy and sometimes insomnia on Tuesday night. Every Wednesday included a bout of diarrhea, but I almost always managed to meet my buddies for our Wednesday retirees lunch anyway. Side effects like blurred vision or shortness of breath arose on Thursday or Friday. But, overall, I lived a normal daily life, doing the shopping, lawn work, socializing, etc.
I could do that because I had a rapid complete response against the myeloma, plus my blood cell counts never got too low. I was very lucky. That continued through stem cell transplant, and now I am not needing any chemo.
Even if your treatment doesn't go like that, don't lose hope. Your doctor can make adjustments to fit your personal situation. Best wishes to you!
Dana
I had surgery on my femur in December 2013 and started treatment a month later. Last winter was horrible weather here in the North, so my activities were limited by that as well. My life followed this predictable pattern: Every Tuesday for 22 weeks I received the chemo combo "CyBorD", meaning Cytoxan (cyclophosphamide), bortezomib (Velcade), and dexamethasone. The dex gave me energy and sometimes insomnia on Tuesday night. Every Wednesday included a bout of diarrhea, but I almost always managed to meet my buddies for our Wednesday retirees lunch anyway. Side effects like blurred vision or shortness of breath arose on Thursday or Friday. But, overall, I lived a normal daily life, doing the shopping, lawn work, socializing, etc.
I could do that because I had a rapid complete response against the myeloma, plus my blood cell counts never got too low. I was very lucky. That continued through stem cell transplant, and now I am not needing any chemo.
Even if your treatment doesn't go like that, don't lose hope. Your doctor can make adjustments to fit your personal situation. Best wishes to you!
Dana
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: What is daily life like during treatment?
My daily life is hard to compare to others but may be similar to a few.
I hurt my back, which started my multiple myeloma journey. After being diagnosed, I quickly started treatment, a 6 cycle VRD (Velcade, Revlimid, dex) regimen followed by an autologous stem cell transplant (ASCT). I had similar experiences as previous posters, but I had extensive bone damage. I've had 3 kyphoplasty procedures and, while being prepped for my transplant, was confirmed to have lost 5 inches (12 cm) in height.
I have 11 compression fractures of my vertebrae, with 10 cemented; severe osteoporosis; and multiple lytic lesions throughout my body. An additional portion of my daily experiences was slowly learning to stand and walk again. Physical therapy was great initially to regain strength, but after my last kyphoplasty, my neuroradiologist said to hold off till my bone disease is stabilized. Like Nancy, I do Zometa treatments once a month and will probably have this along with 10 mg of Revlimid daily for the foreseeable future. If you do Zometa, stay hydrated on treatment days, and Revlimid fatigues me and dries out my skin.
I try to live a normal daily experience but I am still unable to work. I have traveled but have difficulty going for long road trips. I walk unassisted but need to use a cane and push shopping carts when available.
As Eric said, not all have similar experiences with treatments, so I too would recommend finding a local support group to find a common daily experience.
Good luck with your journey!
Kully
I hurt my back, which started my multiple myeloma journey. After being diagnosed, I quickly started treatment, a 6 cycle VRD (Velcade, Revlimid, dex) regimen followed by an autologous stem cell transplant (ASCT). I had similar experiences as previous posters, but I had extensive bone damage. I've had 3 kyphoplasty procedures and, while being prepped for my transplant, was confirmed to have lost 5 inches (12 cm) in height.
I have 11 compression fractures of my vertebrae, with 10 cemented; severe osteoporosis; and multiple lytic lesions throughout my body. An additional portion of my daily experiences was slowly learning to stand and walk again. Physical therapy was great initially to regain strength, but after my last kyphoplasty, my neuroradiologist said to hold off till my bone disease is stabilized. Like Nancy, I do Zometa treatments once a month and will probably have this along with 10 mg of Revlimid daily for the foreseeable future. If you do Zometa, stay hydrated on treatment days, and Revlimid fatigues me and dries out my skin.
I try to live a normal daily experience but I am still unable to work. I have traveled but have difficulty going for long road trips. I walk unassisted but need to use a cane and push shopping carts when available.
As Eric said, not all have similar experiences with treatments, so I too would recommend finding a local support group to find a common daily experience.
Good luck with your journey!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: What is daily life like during treatment?
Thank you all for your thoughtful and helpful replies. I will check out the links you suggested and also try to find out if there is a multiple myeloma support group in the area.
Good luck to you all!
Good luck to you all!
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tm648 - Name: tm648
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/30/2015
- Age at diagnosis: 71
Re: What is daily life like during treatment?
Hi tm648,
You've gotten great responses from a number of folks here.
I just want to second something Nancy said: "Life does go on." That sounds simple, but it is really quite profound. When I was in the smoldering myeloma phase, I imagined that moving into symptomatic multiple myeloma would essentially be a death sentence. But it is not like that at all. You establish a new normal and you move on.
Another reference for you to consider - I wrote a guest column for The Beacon about a year ago talking about what I learned during my first year of treatment. It's available at:
M Burns, "Two Hundred And Six Steps: What I’ve Learned During My First Year Of Multiple Myeloma Treatment," The Myeloma Beacon, Feb 24, 2014.
I hope it is a help to you.
Best wishes! Keep checking in here and keep us posted on how things go for you.
Mike
You've gotten great responses from a number of folks here.
I just want to second something Nancy said: "Life does go on." That sounds simple, but it is really quite profound. When I was in the smoldering myeloma phase, I imagined that moving into symptomatic multiple myeloma would essentially be a death sentence. But it is not like that at all. You establish a new normal and you move on.
Another reference for you to consider - I wrote a guest column for The Beacon about a year ago talking about what I learned during my first year of treatment. It's available at:
M Burns, "Two Hundred And Six Steps: What I’ve Learned During My First Year Of Multiple Myeloma Treatment," The Myeloma Beacon, Feb 24, 2014.
I hope it is a help to you.
Best wishes! Keep checking in here and keep us posted on how things go for you.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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