Hi Mike B.,
Sorry to read of this latest complication. Best wishes moving forward.
If the BMB comes up with you still being MRD negative, I would discuss a therapy break with your docs. I know from personal experience that quality of life is excellent during extended drug-free remission periods. We also know that there are a small (but hopefully growing!) number of patients that do autos, get to CR, and never relapse. Positive vibes being sent your way that you could be one of them!
Mark
Forums
Re: Maintenance treatment post-transplant?
Hi Folks,
First of all, thanks for the replies and kind comments regarding my post from Friday.
This is such a great community! I've been so fortunate and have had mostly good news to report in my posts about my treatments over the past 2 1/2 years. Now, reporting some more challenging news, your supportive comments really mean a lot to me. I feel like I haven't been as good a community member recently as I want to be – not posting anywhere near as much as I would like to. It seems like life has just been a series of doctor visits and the forced 3-day "timeout" in the hospital early this month.
But I should emphasize that I am feeling fine. I'm fact, I am flying out to California this week to try and hike up Half Dome in Yosemite with my daughter and niece. Hopefully I'll have a decent photo to post later this week.
. As an aside, my family insisted that I get specific permission from my cardiologist to do the hike. My cardiologist was fine with it, fortunately. We'll start the new drugs and I'll start wearing the event monitor again when I get back home after the trip.
To answer some questions that came up in your comments:
Mrozdav - My daytime resting pulse was around 48 beats per minute before I started treatment. I've been a runner for 45 years, so that's why my normal pulse is so low. It's now about 38 or 40. I thought that drop was due to me getting in better shape through more running (partly because my back feels so much better). But now it seems that the Revlimid treatment is more likely the cause of the drop. I guess I'm still an extreme long shot to make the 2016 Olympic team after all.
When I'm sleeping, the monitor noted my heart rate to be as low as 29 bpm. But the real problem on the low end was gaps of 3-6 seconds between beats, and one lag perhaps as long as 9 seconds. Those long gaps are what was causing my fainting or near-fainting events. Those mostly seem to have gone away after I stopped taking Revlimid, but the 24-hour monitor did pick up one 4.4 sec gap, which is a little concerning.
Like your father, mine also had a-fib and lived with it for many years. He took Coumadin too.
Amelia - Coreg was one of the beta blockers that was mentioned Friday as a possibility for me. I don't recall them mentioning a specific blood thinner. Best wishes to you as you enter the next phase of your myeloma treatment. I hope things go well for you! I know you'll be happy to stop the dex.
JPC - You're right. It sounds like the challenging thing in my case is the fact that I have one condition that slows my heart rate too much and a different condition that speeds it up too much. Seems like we should just take the average between he two and be happy with that. One concern is that the beta blocker will slow the heart rate down and undo the good effect of stopping the Revlimid in that respect. And thanks for mentioning that you know people who have done well with the ablation surgery. That's encouraging!
JonEman - Your question is something I've been wondering about too: Should I go on something else as continuing maintenance therapy, since it looks like I need to stop Revlimid for good? Or just stop everything (for myeloma) and be myeloma-drug free for awhile? I don't know! That's certainly something I'll discuss with my myeloma specialist after we get the end-of-month test results. If we do continue maintenance but with something else, I think Velcade would not be a good option because I've still got peripheral neuropathy after RVD induction and consolidation. But if we go the maintenance route, Pomalyst seems like a very interesting candidate for the reason you mentioned.
I'm interested to hear more about how Kyprolis affected your lungs. And what are you taking now? I'm sorry you've never gotten to the point of doing maintenance therapy. Your case sounds like a challenging one. Best wishes to you. Please keep me posted on how you are doing.
K_Shash - Thanks for the kind comments and the update on how you are doing. Keep on trucking!
And, Cathy, it's good to hear from you too! Thanks! I look forward to you posts as well.
So we'll see how things go with the new heart meds and the myeloma tests toward the end of the month. But first, time for some fun in California!
Mike
First of all, thanks for the replies and kind comments regarding my post from Friday.
This is such a great community! I've been so fortunate and have had mostly good news to report in my posts about my treatments over the past 2 1/2 years. Now, reporting some more challenging news, your supportive comments really mean a lot to me. I feel like I haven't been as good a community member recently as I want to be – not posting anywhere near as much as I would like to. It seems like life has just been a series of doctor visits and the forced 3-day "timeout" in the hospital early this month.
But I should emphasize that I am feeling fine. I'm fact, I am flying out to California this week to try and hike up Half Dome in Yosemite with my daughter and niece. Hopefully I'll have a decent photo to post later this week.
. As an aside, my family insisted that I get specific permission from my cardiologist to do the hike. My cardiologist was fine with it, fortunately. We'll start the new drugs and I'll start wearing the event monitor again when I get back home after the trip.To answer some questions that came up in your comments:
Mrozdav - My daytime resting pulse was around 48 beats per minute before I started treatment. I've been a runner for 45 years, so that's why my normal pulse is so low. It's now about 38 or 40. I thought that drop was due to me getting in better shape through more running (partly because my back feels so much better). But now it seems that the Revlimid treatment is more likely the cause of the drop. I guess I'm still an extreme long shot to make the 2016 Olympic team after all.
When I'm sleeping, the monitor noted my heart rate to be as low as 29 bpm. But the real problem on the low end was gaps of 3-6 seconds between beats, and one lag perhaps as long as 9 seconds. Those long gaps are what was causing my fainting or near-fainting events. Those mostly seem to have gone away after I stopped taking Revlimid, but the 24-hour monitor did pick up one 4.4 sec gap, which is a little concerning. Like your father, mine also had a-fib and lived with it for many years. He took Coumadin too.
Amelia - Coreg was one of the beta blockers that was mentioned Friday as a possibility for me. I don't recall them mentioning a specific blood thinner. Best wishes to you as you enter the next phase of your myeloma treatment. I hope things go well for you! I know you'll be happy to stop the dex.
JPC - You're right. It sounds like the challenging thing in my case is the fact that I have one condition that slows my heart rate too much and a different condition that speeds it up too much. Seems like we should just take the average between he two and be happy with that.
One concern is that the beta blocker will slow the heart rate down and undo the good effect of stopping the Revlimid in that respect. And thanks for mentioning that you know people who have done well with the ablation surgery. That's encouraging!JonEman - Your question is something I've been wondering about too: Should I go on something else as continuing maintenance therapy, since it looks like I need to stop Revlimid for good? Or just stop everything (for myeloma) and be myeloma-drug free for awhile? I don't know! That's certainly something I'll discuss with my myeloma specialist after we get the end-of-month test results. If we do continue maintenance but with something else, I think Velcade would not be a good option because I've still got peripheral neuropathy after RVD induction and consolidation. But if we go the maintenance route, Pomalyst seems like a very interesting candidate for the reason you mentioned.
I'm interested to hear more about how Kyprolis affected your lungs. And what are you taking now? I'm sorry you've never gotten to the point of doing maintenance therapy. Your case sounds like a challenging one. Best wishes to you. Please keep me posted on how you are doing.
K_Shash - Thanks for the kind comments and the update on how you are doing. Keep on trucking!
And, Cathy, it's good to hear from you too! Thanks! I look forward to you posts as well.
So we'll see how things go with the new heart meds and the myeloma tests toward the end of the month. But first, time for some fun in California!
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Maintenance treatment post-transplant?
G'day Mike,
Hope you have a great time hiking.
I just wanted to add my two cents. I have not been on any maintenance meds since my SCT. I did not have a complete response either. However my levels have stayed stable (to use my docs words). Between 10-15 g/L (1-1.5 g/dL) M-spike.
My levels are checked every 3 months. Whilst i maintain that range, I am medication free. Apart from Zometa once a month, I know this can change at any moment. But, for now, I think it a good thing not to be putting more chemicals in my body.
I personally am grateful not to be on any medications. Maybe a break could and would do your body more good then harm.
My heart has the opposite of you. My heart rate is elevated. Around 115 bpm resting. So you give me a little of your slow heart beat, I'll give you my too high heart beat, and we can both be average. LOL
Take it easy,
Vic
Hope you have a great time hiking.
I just wanted to add my two cents. I have not been on any maintenance meds since my SCT. I did not have a complete response either. However my levels have stayed stable (to use my docs words). Between 10-15 g/L (1-1.5 g/dL) M-spike.
My levels are checked every 3 months. Whilst i maintain that range, I am medication free. Apart from Zometa once a month, I know this can change at any moment. But, for now, I think it a good thing not to be putting more chemicals in my body.
I personally am grateful not to be on any medications. Maybe a break could and would do your body more good then harm.
My heart has the opposite of you. My heart rate is elevated. Around 115 bpm resting. So you give me a little of your slow heart beat, I'll give you my too high heart beat, and we can both be average. LOL
Take it easy,
Vic
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Maintenance treatment post-transplant?
Mike -
I'd be interested to see if your heart problem resolves once you're off all medications. Please do keep us posted. I was so pleased how all my side effects from induction treatment resolved so quickly once I was off the drugs.
When you read about the 50+ side effects that are possible with these drugs, you never imagine you'll be one of the people with the 'rare' side effects. I feel like we are all science experiments.
At the moment I am leaning towards not doing maintenance therapy if at all possible. Of course, if my numbers start climbing dramatically at some point, I will surely go back on treatment. I first want to find out how much my own immune system can keep the myeloma from coming back. I have found an integrative oncologist who has already got me on various expensive, potent supplements. I will report more on this at some point.
I'd be interested to see if your heart problem resolves once you're off all medications. Please do keep us posted. I was so pleased how all my side effects from induction treatment resolved so quickly once I was off the drugs.
When you read about the 50+ side effects that are possible with these drugs, you never imagine you'll be one of the people with the 'rare' side effects. I feel like we are all science experiments.
At the moment I am leaning towards not doing maintenance therapy if at all possible. Of course, if my numbers start climbing dramatically at some point, I will surely go back on treatment. I first want to find out how much my own immune system can keep the myeloma from coming back. I have found an integrative oncologist who has already got me on various expensive, potent supplements. I will report more on this at some point.
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Maintenance treatment post-transplant?
Hi Mike,
I am sure many of us are looking forward to your photos showing you standing on top of the Half Dome. My favorite – Yosemite!
I would think you are in better physical shape than 80% or 90% of the 'healthy' people to be able to hike up the Half Dome. Our son did it a few times when he was barely 30, and our daughter-in-law conditioned for months before she managed that hike, too, before turning 30.
I am impressed with your stamina, and I hope I can regain some of my old endurance to be able to walk 7 - 10 miles per day, up and down a hilly golf course with my golf bag! Recently, I got breathless just going up a slight grade for a couple of blocks! It seems there is hope for me once I get on Revlimid-only maintenance.
Look forward to those photos, but please do not overexert. Not just the hike up a few hundred feet, but the thinner air at 7,000 feet (2100 m) and the forced 3-day hospital stay earlier this week are of concern. However, your cardiologist is fine with it, and I am sure you would stop climbing any further IF you feel exhausted.
K_Shash
I am sure many of us are looking forward to your photos showing you standing on top of the Half Dome. My favorite – Yosemite!
I would think you are in better physical shape than 80% or 90% of the 'healthy' people to be able to hike up the Half Dome. Our son did it a few times when he was barely 30, and our daughter-in-law conditioned for months before she managed that hike, too, before turning 30.
I am impressed with your stamina, and I hope I can regain some of my old endurance to be able to walk 7 - 10 miles per day, up and down a hilly golf course with my golf bag! Recently, I got breathless just going up a slight grade for a couple of blocks! It seems there is hope for me once I get on Revlimid-only maintenance.
Look forward to those photos, but please do not overexert. Not just the hike up a few hundred feet, but the thinner air at 7,000 feet (2100 m) and the forced 3-day hospital stay earlier this week are of concern. However, your cardiologist is fine with it, and I am sure you would stop climbing any further IF you feel exhausted.
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: Maintenance treatment post-transplant?
I'm so sorry to hear about your heart issues, Mike. I really hope they go away soon and there isn't any long-term effect of the Revlimid. I appreciate your letting us know what happened, and I hope you have an absolutely wonderful trip to Yosemite.
Re: Maintenance treatment post-transplant?
Mike:
On the A-Fib, ...as part of your workup for that condition, please put yourself thru a Sleep Study.
Most Peer reviewed recent research points to Sleep Apnea, et al, as a major contributory cause of awake/aroused A-Fib.
Thus, the good news--Map n' Zap ( electrical mapping & ablation) is no longer a favored primary treatment modality. The bad news--you may look like a WWII Bomber pilot on a mission, while you sleep.
5 male clients / friends--one female friend, have been worked up/ treated this year alone. All have been diagnosed with involved Sleep Apnea, et al as a primary "contributor". All have responded well. One needs surgery for an enlarged Uvula.
Here is a starting point. http://jaha.ahajournals.org/content/3/1/e000654.full
Good luck.
PS--I'm 2 years 4 months on 10 mg Revlimid maintenance since aphoresis / Induction( no Dex).
No A fib yet--although I prolly will develop it--and will need to be a "Bomber Pilot", too.
On the A-Fib, ...as part of your workup for that condition, please put yourself thru a Sleep Study.
Most Peer reviewed recent research points to Sleep Apnea, et al, as a major contributory cause of awake/aroused A-Fib.
Thus, the good news--Map n' Zap ( electrical mapping & ablation) is no longer a favored primary treatment modality. The bad news--you may look like a WWII Bomber pilot on a mission, while you sleep.
5 male clients / friends--one female friend, have been worked up/ treated this year alone. All have been diagnosed with involved Sleep Apnea, et al as a primary "contributor". All have responded well. One needs surgery for an enlarged Uvula.
Here is a starting point. http://jaha.ahajournals.org/content/3/1/e000654.full
Good luck.
PS--I'm 2 years 4 months on 10 mg Revlimid maintenance since aphoresis / Induction( no Dex).
No A fib yet--although I prolly will develop it--and will need to be a "Bomber Pilot", too.
-
Rneb
Re: Maintenance treatment post-transplant?
Thanks for the good luck wishes for our Half Dome hike!
We made it! It was a long hike to the top of Half Dome and back to Yosemite Valley. We started at 6:30 am and finished 17 1/2 miles later at 8:45 pm. There were moments of fun. And the views were amazing!
In the photo from the left - my niece Missy, my daughter Kim, and me.
(Click here for a larger, more panoramic version of the photo directly above.)
We made it! It was a long hike to the top of Half Dome and back to Yosemite Valley. We started at 6:30 am and finished 17 1/2 miles later at 8:45 pm. There were moments of fun.
And the views were amazing!In the photo from the left - my niece Missy, my daughter Kim, and me.
- mikebyosemitesmall.jpg (107.48 KiB) Viewed 503 times
(Click here for a larger, more panoramic version of the photo directly above.)
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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
Re: Maintenance treatment post-transplant?
That is amazing, Mike!
Not just the 17.5 miles hike but climbing over 3,000 feet from the Yosemite Valley.
Most of the people I know that climbed to the top of Half Dome drove to the base of the Half Dome and climbed up the final few hundred feet.
K_Shash
Not just the 17.5 miles hike but climbing over 3,000 feet from the Yosemite Valley.
Most of the people I know that climbed to the top of Half Dome drove to the base of the Half Dome and climbed up the final few hundred feet.
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: Maintenance treatment post-transplant?
Great picture, Mike. Thanks for sharing it with everyone and updating us about the hike. That's quite an accomplishment. Perhaps you and your family could make a hike like this one an annual event. You could do it at a different location each year. I'm already looking forward to the update from the 2025 edition!
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Jonah
49 posts
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