Realizing that everyone is different, I was just wondering if there's any wisdom on how quickly myeloma can turn and attack? Like other smolderers, I feel perfectly healthy. My kappa free light chains are way out of whack but have been fluctuating, as mentioned in other posts. Now it looks like my red blood cell count is down and I'm flirting with anemia. I'm prepared for the idea that it's probably time to start treatment and have a second bone marrow biopsy and more labs scheduled for this week.
The question, though, remains: If it does look like I've just now crossed the line to where treatment is warranted, does it need to start right away? In a couple of weeks? In a month or two? Just how urgent is it? I have an overseas trip planned for mid-October and would prefer not to deal with side effects of new medications if a month doesn't usually matter.
Of course, I'll be asking my oncologist this question when I see him on September. It's just nice to tap into the wisdom of this community to have a sense of what's to come.
Thanks!
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Defcon Dragon - Name: Defcon Dragon
- Who do you know with myeloma?: myself, smoldering
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 55
Re: How quick from healthy to sick with myeloma?
Defcon,
I may need to defer to other members to contribute responses that offer more definitive guidance, but I'll offer my experience.
In March of this year I was diagnosed as high risk smoldering and similar to you moved through a period of asymptomatic stability yet with unsettling lab results along with red and white blood counts low normal.
Within the last few weeks the results have become more volatile. I could "cut and paste" the first paragraph of your post and that would be a solid analog of where I currently find myself.
I had a consult with my specialist Monday last and the weight of evidence indicated that treatment should probably begin. Anemia is emerging along with creatinine numbers gradually increasing indicating that the kidney is beginning to labor.
The risk reward conversation went something like this. I could probably hold out another six months at the outside but risk full blown anemia and renal damage before treatment would begin. With a clear calendar, my decision was straightforward.
After my diagnosis in March I too embarked on some foreign travel in June. Felt great, had a wonderful experience, but as I am sure many can relate to, a palpable presence of uncertainty was never far away.
Unfortunately you find yourself with the most difficult of decisions. To perhaps miss an experience and regret it's loss or find that earlier treatment would have been more effective if undertaken before symptoms advance. Personally, one of my goals is to hopefully move through treatment and autologous stem cell transplant and find a period of remission that would offer another opportunity to travel.
My best to you as you make your decision.
Regards,
Farcical
I may need to defer to other members to contribute responses that offer more definitive guidance, but I'll offer my experience.
In March of this year I was diagnosed as high risk smoldering and similar to you moved through a period of asymptomatic stability yet with unsettling lab results along with red and white blood counts low normal.
Within the last few weeks the results have become more volatile. I could "cut and paste" the first paragraph of your post and that would be a solid analog of where I currently find myself.
I had a consult with my specialist Monday last and the weight of evidence indicated that treatment should probably begin. Anemia is emerging along with creatinine numbers gradually increasing indicating that the kidney is beginning to labor.
The risk reward conversation went something like this. I could probably hold out another six months at the outside but risk full blown anemia and renal damage before treatment would begin. With a clear calendar, my decision was straightforward.
After my diagnosis in March I too embarked on some foreign travel in June. Felt great, had a wonderful experience, but as I am sure many can relate to, a palpable presence of uncertainty was never far away.
Unfortunately you find yourself with the most difficult of decisions. To perhaps miss an experience and regret it's loss or find that earlier treatment would have been more effective if undertaken before symptoms advance. Personally, one of my goals is to hopefully move through treatment and autologous stem cell transplant and find a period of remission that would offer another opportunity to travel.
My best to you as you make your decision.
Regards,
Farcical
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: How quick from healthy to sick with myeloma?
Hi Defcon,
I think the urgency of the situation really depends on whether you are experiencing end-organ damage or not.
As an example, if my free light chains were elevated to the point that they qualified for as a "myeloma-defining event" (MDE), my specialist may not even say that I needed to start treatment. But if my kidney function was being compromised because of these elevated free light chain levels, he would probably ask me to start treatment soon, if not right away.
Another example would be if I had radiological imaging that detected a couple of small focal lesions, but no lytic lesions. In that case, my specialist would likely say that it is OK to wait a bit before for starting up treatment, or perhaps wait until the focal lesions progressed.
Or if you were anemic to the point that this was putting undo stress on your heart, then my doctor again might suggest starting treatment right away. But if I were borderline anemic (by myeloma standards) and my heart function and oxygen levels were good, then he might say that it would be OK to wait.
But every specialist is different and only a doctor can say if you have an immediate threat of suffering from organ damage. And I am only just guessing at what my specialist might say under each of these circumstances.
Also, my specialist tends to have the philosophy of wanting to delay starting treatment until it is really warranted by some sort of end-organ damage, which is not a philosophy shared by all specialists.
I think the urgency of the situation really depends on whether you are experiencing end-organ damage or not.
As an example, if my free light chains were elevated to the point that they qualified for as a "myeloma-defining event" (MDE), my specialist may not even say that I needed to start treatment. But if my kidney function was being compromised because of these elevated free light chain levels, he would probably ask me to start treatment soon, if not right away.
Another example would be if I had radiological imaging that detected a couple of small focal lesions, but no lytic lesions. In that case, my specialist would likely say that it is OK to wait a bit before for starting up treatment, or perhaps wait until the focal lesions progressed.
Or if you were anemic to the point that this was putting undo stress on your heart, then my doctor again might suggest starting treatment right away. But if I were borderline anemic (by myeloma standards) and my heart function and oxygen levels were good, then he might say that it would be OK to wait.
But every specialist is different and only a doctor can say if you have an immediate threat of suffering from organ damage. And I am only just guessing at what my specialist might say under each of these circumstances.
Also, my specialist tends to have the philosophy of wanting to delay starting treatment until it is really warranted by some sort of end-organ damage, which is not a philosophy shared by all specialists.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How quick from healthy to sick with myeloma?
Defcon,
Multibilly is right -- I think it depends on how your organs - your bones and your kidneys - are doing. And that, too, depends on the aggressiveness of the myeloma. Speaking from experience, I know aggressive myeloma can do significant damage in a very short amount of time. I went from having healthy kidneys at diagnosis to damaged kidneys in just two months when the drugs didn't work. I was put in the hospital immediately once they realized what was happening to "save my kidneys." Note that my doctors didn't realize I had "aggressive" myeloma at diagnosis, despite genetic testing, and there was no reason to think I was in any particular risk.
So proceed with caution would be my advice. And make sure you and your doctors are carefully tracking you month to month.
Another note on speed: I went from being mildly anemic in November 2016 to severely anemic by March, when I was diagnosed. So it appears once the cancer took off, it took off. Though as you know, everyone is quite different. I just wanted you to know it can go very quickly. I do hope yours doesn't, and I do hope you are able to take your vacation as planned. But vacations can be rescheduled. Your health is obviously the most important thing!
Good luck to you!
Multibilly is right -- I think it depends on how your organs - your bones and your kidneys - are doing. And that, too, depends on the aggressiveness of the myeloma. Speaking from experience, I know aggressive myeloma can do significant damage in a very short amount of time. I went from having healthy kidneys at diagnosis to damaged kidneys in just two months when the drugs didn't work. I was put in the hospital immediately once they realized what was happening to "save my kidneys." Note that my doctors didn't realize I had "aggressive" myeloma at diagnosis, despite genetic testing, and there was no reason to think I was in any particular risk.
So proceed with caution would be my advice. And make sure you and your doctors are carefully tracking you month to month.
Another note on speed: I went from being mildly anemic in November 2016 to severely anemic by March, when I was diagnosed. So it appears once the cancer took off, it took off. Though as you know, everyone is quite different. I just wanted you to know it can go very quickly. I do hope yours doesn't, and I do hope you are able to take your vacation as planned. But vacations can be rescheduled. Your health is obviously the most important thing!
Good luck to you!
Re: How quick from healthy to sick with myeloma?
Thanks so much for your quick replies. It’s really helpful to hear from others who are / have been at similar crossroads. I’ll know a lot more once my bone marrow biopsy results come in.
My specialist is of the opinion that preventing end organ damage makes more sense than letting it occur if it’s inevitable. That being said, I’m reluctant to take drugs for any reason, so I have to be convinced. That’s how I got diagnosed, by refusing to simply take bisphosphonates without exploring why I had early osteoporosis in the first place. Knowing when it’s inevitable is the million dollar question!
I’ve considered this whole year to be “bonus time” as my specialist really thought it was progressing more quickly and would need treatment 1st quarter 2017. I have relished every symptom-free, side-effect-free moment. Plus, it’s given me time to come to terms with “I have what?!?!” when I never felt sick at all. Not even a cold or flu. No pain. Nothing. I’d never even heard of multiple myeloma.
Thanks again to this community for being there.
My specialist is of the opinion that preventing end organ damage makes more sense than letting it occur if it’s inevitable. That being said, I’m reluctant to take drugs for any reason, so I have to be convinced. That’s how I got diagnosed, by refusing to simply take bisphosphonates without exploring why I had early osteoporosis in the first place. Knowing when it’s inevitable is the million dollar question!
I’ve considered this whole year to be “bonus time” as my specialist really thought it was progressing more quickly and would need treatment 1st quarter 2017. I have relished every symptom-free, side-effect-free moment. Plus, it’s given me time to come to terms with “I have what?!?!” when I never felt sick at all. Not even a cold or flu. No pain. Nothing. I’d never even heard of multiple myeloma.
Thanks again to this community for being there.
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Defcon Dragon - Name: Defcon Dragon
- Who do you know with myeloma?: myself, smoldering
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 55
Re: How quick from healthy to sick with myeloma?
Defcon,
I, too, was extremely healthy and I, too, hated taking drugs for anything, even a headache. But I just want to tell you I emphatically do not consider organ damage to be inevitable, and I welcome taking the treatments that are keeping me healthy. I would have died last year without them. It's as simple as that.
I am putting my faith in the drugs being developed right now, so it is extremely vital to keep our bones and kidneys and everything thing else as strong and healthy as possible so we can be around to take advantage of all the exciting new therapies. And these new treatments can have relatively minor side effects, compared to older chemotherapy drugs. Yes, there are serious side effects still, but you never know how your body will react.
I guess I'm trying to say don't be afraid of the drugs. They are better than the consequences of the organ damage that could occur.
I wish you the very best!
I, too, was extremely healthy and I, too, hated taking drugs for anything, even a headache. But I just want to tell you I emphatically do not consider organ damage to be inevitable, and I welcome taking the treatments that are keeping me healthy. I would have died last year without them. It's as simple as that.
I am putting my faith in the drugs being developed right now, so it is extremely vital to keep our bones and kidneys and everything thing else as strong and healthy as possible so we can be around to take advantage of all the exciting new therapies. And these new treatments can have relatively minor side effects, compared to older chemotherapy drugs. Yes, there are serious side effects still, but you never know how your body will react.
I guess I'm trying to say don't be afraid of the drugs. They are better than the consequences of the organ damage that could occur.
I wish you the very best!
Re: How quick from healthy to sick with myeloma?
I just want to second everything Pippy said.
Like you, I hated taking drugs for anything until my diagnosis, but I'm very happy to have all of the treatments that are now available for myeloma. For what it's worth, my own four months on Cytoxan, dex, and Velcade involved almost no side effects. Some very mild early nausea and some mild foot neuropathy. Even during my stem cell transplant, I tolerated the melphalan well, with just some mild diarrhea and severe fatigue (and some hair loss, though I kept my eyebrows).
I was very concerned and fearful of side effects, but as Pippy says, these drugs have fewer side effects than years ago, plus they work and holding off organ damage is a key, it seems to me, to having good long remissions. The more time we buy with the drugs that are out there now, the more time we have for better ones, if not something like a cure.
Like you, I hated taking drugs for anything until my diagnosis, but I'm very happy to have all of the treatments that are now available for myeloma. For what it's worth, my own four months on Cytoxan, dex, and Velcade involved almost no side effects. Some very mild early nausea and some mild foot neuropathy. Even during my stem cell transplant, I tolerated the melphalan well, with just some mild diarrhea and severe fatigue (and some hair loss, though I kept my eyebrows).
I was very concerned and fearful of side effects, but as Pippy says, these drugs have fewer side effects than years ago, plus they work and holding off organ damage is a key, it seems to me, to having good long remissions. The more time we buy with the drugs that are out there now, the more time we have for better ones, if not something like a cure.
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: How quick from healthy to sick with myeloma?
Defcon,
It really is a million dollar question, and I don't think science has an answer yet.
There are several risk criteria for progression from smoldering to active multiple myeloma: high M-protein, kappa-lambda ratio over 8, and immunoparesis (low uninvolved immunoglobulins), but all is individual, very important is the trend in M-protein, kappa-lambda ratio, etc.
One thing is, I think, for certain. The longer you stay smoldering, the better your chances are to stay smoldering longer. This makes sense, of course, but nothing is guaranteed.
Best of luck!
It really is a million dollar question, and I don't think science has an answer yet.
There are several risk criteria for progression from smoldering to active multiple myeloma: high M-protein, kappa-lambda ratio over 8, and immunoparesis (low uninvolved immunoglobulins), but all is individual, very important is the trend in M-protein, kappa-lambda ratio, etc.
One thing is, I think, for certain. The longer you stay smoldering, the better your chances are to stay smoldering longer. This makes sense, of course, but nothing is guaranteed.
Best of luck!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
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