My dad, 75 years old, was diagnosed last month with Stage 2 multiple myeloma, as per his doctor.
Dad has suddenly developed anemia of 10.4 g/l. For the last 2 years it stayed that level until it went lower last month to 9 g/l .The GP decided to do a series of tests, especially that he had fever, after which the tests revealed multiple myeloma.
Paraprotein (or M-protein) was 23 g/l (2.3 g/dL) after a month retest 24 g/l (2.4 g/dL).
EGFR 53 ml/min/1.73 after a month 63
Lambda: 300 after a month 330 mg/l
Kappa-lambda ratio: 0.1
No bone lesions
Plasma affected: 23%
FISH: p53 deletion, 1q21 gain
So we were referred to a heamatologist and he told dad he has only months to live and has poor prognosis due to the deletion if he doesn't start treatment as soon as possible. Dad didn't start treatment for a month and was retested with the above results. Now they will start him once a week Velcade subcutaneous, cyclophosphamide IV, and dexamethasone and monthly Zometa.
Now the confusion is that our GP said why don't we just wait and see since my dad's numbers are stable and treatment will not make much difference since he had the p53 deletion and currently dad is asymptomatic (no pain or any issues).
Would not starting treatment make sense in this case, and is that a common strategy?
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lili88 - Name: lili
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: may 2018
- Age at diagnosis: 75
Re: Delaying treatment after multiple myeloma diagnosis?
That's a complex question with a number of factors: how likely is he to respond to the treatment, how likely is he to progress quickly without it, how hard will the therapy be on him, what will they do about the anemia, etc.
That said, I believe that "watch and wait" is a strategy used for some situations involving myeloma.
Sorry to be of little help - maybe others here have dealt with this situation and can shed more light on it.
Best wishes to you and your father, and I hope that he does well on whatever path you choose going forward.
That said, I believe that "watch and wait" is a strategy used for some situations involving myeloma.
Sorry to be of little help - maybe others here have dealt with this situation and can shed more light on it.
Best wishes to you and your father, and I hope that he does well on whatever path you choose going forward.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Delaying treatment after multiple myeloma diagnosis?
I'm a big believer in expert second opinions when the decision is this important. Can you find and afford a myeloma specialist to review his case?
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
Re: Delaying treatment after multiple myeloma diagnosis?
lili8,
I also would recommend seeking out and conferring with a myeloma specialist. You mentioned your dad was referred to a hematologist, that means they specialize in blood disorders, not necessarily cancer, which is usually an oncologist. Some hematologists are also oncologists. A myeloma specialist is an oncologist whose primary practice is treating patients with multiple myeloma. Certainly I would not rely on the word of a GP.
Not sure where you live, but many if not most of the large cities in the U.S. have myeloma specialists.
Good luck.
I also would recommend seeking out and conferring with a myeloma specialist. You mentioned your dad was referred to a hematologist, that means they specialize in blood disorders, not necessarily cancer, which is usually an oncologist. Some hematologists are also oncologists. A myeloma specialist is an oncologist whose primary practice is treating patients with multiple myeloma. Certainly I would not rely on the word of a GP.
Not sure where you live, but many if not most of the large cities in the U.S. have myeloma specialists.
Good luck.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Delaying treatment after multiple myeloma diagnosis?
We live in Perth, Australia (I mentioned this in a previous post).
We have seen a haematologist-oncologist yesterday and he also was with starting treatment as soon as possible, as the multiple myeloma is active, per him. I don't understand since he did the tests again and they are lesser than before, or same, so in my head that means stable, but I'm not a doctor.
This is all new. I hope we don't regret starting treatment. I mean, I look at dad, and he looks perfect. No pain, no issues, no fatigue, and the idea to start treatment that will make him feel bad is so difficult for me to understand.
We have seen a haematologist-oncologist yesterday and he also was with starting treatment as soon as possible, as the multiple myeloma is active, per him. I don't understand since he did the tests again and they are lesser than before, or same, so in my head that means stable, but I'm not a doctor.
This is all new. I hope we don't regret starting treatment. I mean, I look at dad, and he looks perfect. No pain, no issues, no fatigue, and the idea to start treatment that will make him feel bad is so difficult for me to understand.
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lili88 - Name: lili
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: may 2018
- Age at diagnosis: 75
Re: Delaying treatment after multiple myeloma diagnosis?
Hi lili -
I understand your concern over putting your dad through difficult treatment if it's not absolutely necessary. I can also understand why the doctors would want to start treatment, though. His myeloma does sound like it's pretty stable right now but I don't know whether that means it's not capable of causing problems. The fact that the doctors consider it active indicates that this sort of thing might be the case - just because the numbers are stable doesn't mean the disease is not harming him. It might be worth asking them what it is that they're concerned about if the disease continues to be stable, particularly if he's carefully monitored. (If they haven't already mentioned this.)
If he does start treatment, you can watch carefully and see how things go. Sometimes, the treatments really don't cause too much in the way of side effects. If your dad tolerates it well, then he can keep going with it. If the side effects are difficult for him, then you both can work with the doctors to change the drugs, lower dosages, etc. There should be options along those lines.
I understand your concern over putting your dad through difficult treatment if it's not absolutely necessary. I can also understand why the doctors would want to start treatment, though. His myeloma does sound like it's pretty stable right now but I don't know whether that means it's not capable of causing problems. The fact that the doctors consider it active indicates that this sort of thing might be the case - just because the numbers are stable doesn't mean the disease is not harming him. It might be worth asking them what it is that they're concerned about if the disease continues to be stable, particularly if he's carefully monitored. (If they haven't already mentioned this.)
If he does start treatment, you can watch carefully and see how things go. Sometimes, the treatments really don't cause too much in the way of side effects. If your dad tolerates it well, then he can keep going with it. If the side effects are difficult for him, then you both can work with the doctors to change the drugs, lower dosages, etc. There should be options along those lines.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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