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Re: Well well, not too bad so far
Congrats on the stringent complete remission.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Well well, not too bad so far
First I want to express my deep gratitude to the wonderful people here and the kindness and willingness to try to answer questions, comment, and enter into dialog!
And now an update, 4 years later.
There is not so much to tell. Still monthly blood tests at the hospital I go to. They stopped the urine tests this summer. Zero M-spike, kappa-lambda ratio okay, and no other symptoms.
My myeloma specialist still talks about "when" the multiple myeloma returns. And I guess that that is the perspective.
Side effects: Still the same as during the induction before my autologous stem cell transplant; strange feelings in the toes, and cold feet, even when they are objectively very warm.
But I will still say, as I did the first time: So far so good.
When I started treatment I was told that multiple myeloma is incurable, and that is still the case, as I understand it. So I guess that it is still "calm before the storm". But why not enjoy the calm?
Van Gogh should have said something like "The fishermen know that the sea is dangerous and the storm terrible, but they have never found these dangers sufficient reason for remaining ashore." I will just add: Let's sail.
And now an update, 4 years later.
There is not so much to tell. Still monthly blood tests at the hospital I go to. They stopped the urine tests this summer. Zero M-spike, kappa-lambda ratio okay, and no other symptoms.
My myeloma specialist still talks about "when" the multiple myeloma returns. And I guess that that is the perspective.
Side effects: Still the same as during the induction before my autologous stem cell transplant; strange feelings in the toes, and cold feet, even when they are objectively very warm.
But I will still say, as I did the first time: So far so good.
When I started treatment I was told that multiple myeloma is incurable, and that is still the case, as I understand it. So I guess that it is still "calm before the storm". But why not enjoy the calm?
Van Gogh should have said something like "The fishermen know that the sea is dangerous and the storm terrible, but they have never found these dangers sufficient reason for remaining ashore." I will just add: Let's sail.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Well well, not too bad so far
Hi Lev
Belatedly that's good news you're still sailing. I hope now October that's still the case.
I have just last week got back on the stormy sea. Started on Kyprolis and dex. It's hitting me hard. I guess I was spoilt for the last 4- 5 years medication free.
As always, though, it's the storm inside my head that does the worst damage. Especially when I am told by a doctor that everything about my disease puts me outside the box. Given my cytogenics and reactions. Which in turn makes me some sort of "test study"; my case is apparently doing the rounds and being referred to a "professor of myeloma" and a guru of stem cell transplants, to work out where my treatment goes from here. If it goes anywhere.
It's all too confusing, and I must admit that a lot of the time all I hear is "Blah! Blah! Blah!".
I loved your analogy by the way. I think it very fitting. The unpredictable ocean.
Take care,
Vic
Belatedly that's good news you're still sailing. I hope now October that's still the case.
I have just last week got back on the stormy sea. Started on Kyprolis and dex. It's hitting me hard. I guess I was spoilt for the last 4- 5 years medication free.
As always, though, it's the storm inside my head that does the worst damage. Especially when I am told by a doctor that everything about my disease puts me outside the box. Given my cytogenics and reactions. Which in turn makes me some sort of "test study"; my case is apparently doing the rounds and being referred to a "professor of myeloma" and a guru of stem cell transplants, to work out where my treatment goes from here. If it goes anywhere.
It's all too confusing, and I must admit that a lot of the time all I hear is "Blah! Blah! Blah!".
I loved your analogy by the way. I think it very fitting. The unpredictable ocean.
Take care,
Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Well well, not too bad so far
Hi Vic,
Also sending my best and warmest thoughts.
Still no M-component (M-spike) and perfect kappa-lambda ratio. And in a few months it will be the sixth year anniversary from diagnosis and more than five years without any measurable signs.
Because of the trial I took part in I am going to the hospital every 4th week for control, blood samples, and clinical review. Classified as 0 (zero handicaps / problems). If it were not for the trial, I would only go every three or six months.
So still so far so good.
But I am also very much aware that for so many other people with multiple myeloma the outcome and the journey is not as good and peaceful as mine. And I often think of that as being very very unfair.
I hope that the outcome of my trial and all the other new treatments will ensure that in the future most other patients will have the same outcome (and perhaps not even have to endure the stem cell transplant).
Greetings,
Lev
Also sending my best and warmest thoughts.
Still no M-component (M-spike) and perfect kappa-lambda ratio. And in a few months it will be the sixth year anniversary from diagnosis and more than five years without any measurable signs.
Because of the trial I took part in I am going to the hospital every 4th week for control, blood samples, and clinical review. Classified as 0 (zero handicaps / problems). If it were not for the trial, I would only go every three or six months.
So still so far so good.
But I am also very much aware that for so many other people with multiple myeloma the outcome and the journey is not as good and peaceful as mine. And I often think of that as being very very unfair.
I hope that the outcome of my trial and all the other new treatments will ensure that in the future most other patients will have the same outcome (and perhaps not even have to endure the stem cell transplant).
Greetings,
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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