Hello, I'm Scott from the UK and I'm here to learn and hopefully make a few friends.
I'm 42 and have just had the bombshell of the diagnosis of asymptomatic myeloma. I've had the x-rays, the rather painful bone marrow removal (good job the bed had a rail to hang on to otherwise the nurses hand might have been mush), and those with much knowledge say they want to treat me sooner rather than later.
I could go on for hours writing, but I'll have a look around the forum and get to know what's what.
Forums
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scoobydoo - Name: Scott
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2010
- Age at diagnosis: 42
Re: Hello, just diagnosed with asymptomatic myeloma
Hi Scott, thanks for introducing yourself. I'd be interested in hearing more about what "those with much knowledge" (I assume your doctors) are saying about treatment of your myeloma.
I've been told and also read in a lot of places that most myeloma specialists currently prefer to "wait and watch" smoldering / asymptomatic myeloma and to only treat once it progresses to active myeloma. I know this is a bit of a controversial subject, and there are studies underway to see whether smoldering patients benefit from early treatment (delayed progression or longer lives). But so far, they haven't shown any significant benefit, just a higher rate of side effects. Now they're trying to identify certain patients who are at higher risk of progressing, and then whether treatment is beneficial to those patients.
Anyway, what reasons have your doctors given you for wanting to start treatment? Have they identified any chromosomal abnormalities or anything else that may put you at high risk and warrant treatment? What type of treatment do they want to put you on?
Thanks for sharing.
I've been told and also read in a lot of places that most myeloma specialists currently prefer to "wait and watch" smoldering / asymptomatic myeloma and to only treat once it progresses to active myeloma. I know this is a bit of a controversial subject, and there are studies underway to see whether smoldering patients benefit from early treatment (delayed progression or longer lives). But so far, they haven't shown any significant benefit, just a higher rate of side effects. Now they're trying to identify certain patients who are at higher risk of progressing, and then whether treatment is beneficial to those patients.
Anyway, what reasons have your doctors given you for wanting to start treatment? Have they identified any chromosomal abnormalities or anything else that may put you at high risk and warrant treatment? What type of treatment do they want to put you on?
Thanks for sharing.
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smoldering Frank - Name: Frank
- When were you/they diagnosed?: Jan 22, 2010
- Age at diagnosis: 56
Re: Hello, just diagnosed with asymptomatic myeloma
Hello,
I can sympathise with how you are feeling at he moment.
I too have the dreaded asymptomatic myeloma diagnosis hanging over me and am also from the UK. Like Frank, I am very interested in why treatment sooner rather than later is being advocated. My diagnosis was in April 2008 and so far no treatment. My paraprotein level is on the low side (IgA about 12) but my kappa free light chains are screamingly high (between 400 and 500), and yet my consultant is quite comfortable with the 'watchful waiting' for as long as all functional indices are fine.
So I wonder why, if you are asymptomatic, they want to start treatment and with what?
All the best
I can sympathise with how you are feeling at he moment.
I too have the dreaded asymptomatic myeloma diagnosis hanging over me and am also from the UK. Like Frank, I am very interested in why treatment sooner rather than later is being advocated. My diagnosis was in April 2008 and so far no treatment. My paraprotein level is on the low side (IgA about 12) but my kappa free light chains are screamingly high (between 400 and 500), and yet my consultant is quite comfortable with the 'watchful waiting' for as long as all functional indices are fine.
So I wonder why, if you are asymptomatic, they want to start treatment and with what?
All the best
-
Aramis
Re: Hello, just diagnosed with asymptomatic myeloma
Hi Frank & Aramis,
Sorry its taken a while to post again, its taken a few days to begin to get my head around what is happening. There's a stack of catching up to do, first job is to drop in here.
Thanks aramis - did you feel numb, like somehow you were in a dream, thats just how I felt. I’ve told my family over the last few days and I remember saying all the words but not being connected to them
Went out on Monday night, watched the Dagenham Girls film - brilliant, got drunk and let off some steam. So here I am with my brain reconnected!
I don't have all of the info yet, I'd be grateful of your experience in explaining the bits I am missing, and I'll tell you what I know so far. Back in June this year a blood test for celiac disease picked up low blood counts - whites @ 2.7, hemaglobin @13.5, platelets @ 170 are the ones I remember. Two more blood tests and urine test and I'm off the to the hematologist. Blood showed paraprotein, IgA lambda @ 22.3 g/l. Urine showed 0,01, so just on the scale around zero. Three weeks later, bone marrow showed 20% plasma count.
If you have a look in the multiple myeloma part of the forum, there is question about dropping hemoglobin counts from me, at the moment that is my main worry. Does that mean the myeloma is accelerating, I don’t know yet.
The hematologist said to me that due to my relatively young age she considers it a wise move to treat me soon with the first line treatment, and then after that a stem cell transplant using my own stem cells. Her theory is that as I am healthy in other ways this treatment carries least risk and potential for longest life.
Frank, I totally agree that all the info out there suggests asymptomatic myeloma is left until something changes, I don’t know anymore until I go back in about 3 weeks, It does concern me that maybe there is something she is not telling me, and I’m going to ask for more information. I think there is other information which helps the diagnosis, something to do with kappa/lambda ratio, beta M protein and something to do with chromosomes. Do they automatically test for these?
Aramis, I’m confused about something you said – blood paraprotein levels of IgA, which I have too, what is the difference between that and the free light chains. Somehow I thought they were the same thing. I also think that M-protein and paraprotein and one in the same – is that right?
One more thing, since the middle of July we have changed our diet at home, nothing to do with myeloma because it wasn’t diagnosed then, but more to do with my better half doing the Weighwatchers thing. I started cooking a curry 6 days out of seven, Indian and Pakistan type curry. I didn’t really think about it much but, looking back, I realised I actually felt better in myself after about 6 weeks of this lifestyle. It also occurred to me that before that I had begun to feel worse, was more lethargic over the months, a bit like being down in the dumps but for no reason
Before I was diagnosed I had an idea what was going on through looking into high paraprotein levels, and came across the curcumin debate – I have linked it with my recent curry exploits, maybe wrongly, who knows. Anyway, I researched away and decided that as some studies show a link between curcumin and slowing down cancer, it is worth a go. As of last week I am taking 4 g a day in 1 g capsules, which have 5% pepper. I don’t see there is anything to lose and it will be interesting to see how things go over the next three months.
Best wishes to you both,
Scott.
Sorry its taken a while to post again, its taken a few days to begin to get my head around what is happening. There's a stack of catching up to do, first job is to drop in here.
Thanks aramis - did you feel numb, like somehow you were in a dream, thats just how I felt. I’ve told my family over the last few days and I remember saying all the words but not being connected to them
Went out on Monday night, watched the Dagenham Girls film - brilliant, got drunk and let off some steam. So here I am with my brain reconnected!
I don't have all of the info yet, I'd be grateful of your experience in explaining the bits I am missing, and I'll tell you what I know so far. Back in June this year a blood test for celiac disease picked up low blood counts - whites @ 2.7, hemaglobin @13.5, platelets @ 170 are the ones I remember. Two more blood tests and urine test and I'm off the to the hematologist. Blood showed paraprotein, IgA lambda @ 22.3 g/l. Urine showed 0,01, so just on the scale around zero. Three weeks later, bone marrow showed 20% plasma count.
If you have a look in the multiple myeloma part of the forum, there is question about dropping hemoglobin counts from me, at the moment that is my main worry. Does that mean the myeloma is accelerating, I don’t know yet.
The hematologist said to me that due to my relatively young age she considers it a wise move to treat me soon with the first line treatment, and then after that a stem cell transplant using my own stem cells. Her theory is that as I am healthy in other ways this treatment carries least risk and potential for longest life.
Frank, I totally agree that all the info out there suggests asymptomatic myeloma is left until something changes, I don’t know anymore until I go back in about 3 weeks, It does concern me that maybe there is something she is not telling me, and I’m going to ask for more information. I think there is other information which helps the diagnosis, something to do with kappa/lambda ratio, beta M protein and something to do with chromosomes. Do they automatically test for these?
Aramis, I’m confused about something you said – blood paraprotein levels of IgA, which I have too, what is the difference between that and the free light chains. Somehow I thought they were the same thing. I also think that M-protein and paraprotein and one in the same – is that right?
One more thing, since the middle of July we have changed our diet at home, nothing to do with myeloma because it wasn’t diagnosed then, but more to do with my better half doing the Weighwatchers thing. I started cooking a curry 6 days out of seven, Indian and Pakistan type curry. I didn’t really think about it much but, looking back, I realised I actually felt better in myself after about 6 weeks of this lifestyle. It also occurred to me that before that I had begun to feel worse, was more lethargic over the months, a bit like being down in the dumps but for no reason
Before I was diagnosed I had an idea what was going on through looking into high paraprotein levels, and came across the curcumin debate – I have linked it with my recent curry exploits, maybe wrongly, who knows. Anyway, I researched away and decided that as some studies show a link between curcumin and slowing down cancer, it is worth a go. As of last week I am taking 4 g a day in 1 g capsules, which have 5% pepper. I don’t see there is anything to lose and it will be interesting to see how things go over the next three months.
Best wishes to you both,
Scott.
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scoobydoo - Name: Scott
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2010
- Age at diagnosis: 42
Re: Hello, just diagnosed with asymptomatic myeloma
Recommend you get a second opinion from a myeloma specialist. Treating multiple myeloma while in the earliest stages is not recommended in the U.S.. It is common for the patient to want to treat with some urgency as that is the prevailing position of "other" cancers, in particular solid tumor cancers. Blood cancers are quite different. But there are some who have lived over 20 years with multiple myeloma not developing full blown.
The treatment is no walk in the park, I can assure you, and the fact that you are young - you want to be 1) aggressive, but 2) realize the treatment can cause cancer too. So, as you can see, it's not an easy balance. The good news for you is that you have time to explore your options.
I recommend also going to a researching physician and not a treating physician for one of your second opinions. Research docs have stats on survival with their treatment protocols and you should feel free to discuss those. Treating physicians don't keep those statistics.
I'm sorry that you are facing this challenge, it is not a club we choose to belong, but you will find great support in other multiple myeloma folks. They have sustained me in our journey.
Lori
The treatment is no walk in the park, I can assure you, and the fact that you are young - you want to be 1) aggressive, but 2) realize the treatment can cause cancer too. So, as you can see, it's not an easy balance. The good news for you is that you have time to explore your options.
I recommend also going to a researching physician and not a treating physician for one of your second opinions. Research docs have stats on survival with their treatment protocols and you should feel free to discuss those. Treating physicians don't keep those statistics.
I'm sorry that you are facing this challenge, it is not a club we choose to belong, but you will find great support in other multiple myeloma folks. They have sustained me in our journey.
Lori
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: Hello, just diagnosed with asymptomatic myeloma
Hello again Scoobydoo
In answer to your questions ...
Did you feel numb, like somehow you were in a dream, thats just how I felt. I’ve told my family over the last few days and I remember saying all the words but not being connected to them
Yes, numb, disbelieving, scared, angry ... I just couldn't believe that I was feeling 100% fit and well and yet I was being told I had myeloma. Mine, like many, was detected from a random blood test for a painful leg which went away of it's own accord and had nothing to do with myeloma. And what I had to get my head round was that I was actually lucky because they found it before my kidneys had packed-up and/or my skeleton had been destroyed.
At diagnosis, my bone marrow plasma cells was ~15% and my paraprotein (which is 'UK speak' for M spike) was 8 g/L (0.8 g/dL). At the next blood test just 6 weeks later my paraprotein was up to 12 g/L (1.2 g/dL) and the consultant warned me it could be we were looking at treatment within the next couple of years. But since then (May 2008), it has stayed pretty steadily at 12 - sometimes down a little,once up to 14.
If you have a look in the multiple myeloma part of the forum there is question about dropping hemoglobin counts from me. At the moment that is my main worry. Does that mean the myeloma is accelerating? I don’t know yet.
It is certainly the case that a falling hemoglobin is one indicator, but there are stories out there of individuals who have experienced falls in hemoglobin, only for it to recover again.
I’m confused about something you said – blood paraprotein levels of IgA, which I have too, what is the difference between that and the free light chains. Somehow I thought they were the same thing. I also think that M-protein and paraprotein and one in the same – is that right?
Free light chains and the paraprotein (heavy chain) are not the same thing and very often don't go hand-in-hand. Mine certainly don't, and what that means is that I have a separate clone producing light chains only. The free light chain (FLC) test is relatively new and whilst there are scary statistics out there about elevated FLCs meaning increased likelihood of progression and increased likelihood of high risk cytogenetics, there isn't a huge amount of information to support it. Mine have been over 300 ever since the first measurement and so far haven't done me any harm. When they come out in the urine they are called Bence Jones protein and so far, mine don't show there.
In the UK, I don't think they routinely do a cytogenetics test at the first stage of diagnosis. They didn't for me, although everyone believed we were looking at MGUS. When I've asked my consultant about it, her view is it's not worth another bone marrow biopsy for until you reach the treatment stage.
And finally, I too am a supporter of curcumin. It won't do you any harm and it could help.
I hope this has helped.
All the best.
In answer to your questions ...
Did you feel numb, like somehow you were in a dream, thats just how I felt. I’ve told my family over the last few days and I remember saying all the words but not being connected to them
Yes, numb, disbelieving, scared, angry ... I just couldn't believe that I was feeling 100% fit and well and yet I was being told I had myeloma. Mine, like many, was detected from a random blood test for a painful leg which went away of it's own accord and had nothing to do with myeloma. And what I had to get my head round was that I was actually lucky because they found it before my kidneys had packed-up and/or my skeleton had been destroyed.
At diagnosis, my bone marrow plasma cells was ~15% and my paraprotein (which is 'UK speak' for M spike) was 8 g/L (0.8 g/dL). At the next blood test just 6 weeks later my paraprotein was up to 12 g/L (1.2 g/dL) and the consultant warned me it could be we were looking at treatment within the next couple of years. But since then (May 2008), it has stayed pretty steadily at 12 - sometimes down a little,once up to 14.
If you have a look in the multiple myeloma part of the forum there is question about dropping hemoglobin counts from me. At the moment that is my main worry. Does that mean the myeloma is accelerating? I don’t know yet.
It is certainly the case that a falling hemoglobin is one indicator, but there are stories out there of individuals who have experienced falls in hemoglobin, only for it to recover again.
I’m confused about something you said – blood paraprotein levels of IgA, which I have too, what is the difference between that and the free light chains. Somehow I thought they were the same thing. I also think that M-protein and paraprotein and one in the same – is that right?
Free light chains and the paraprotein (heavy chain) are not the same thing and very often don't go hand-in-hand. Mine certainly don't, and what that means is that I have a separate clone producing light chains only. The free light chain (FLC) test is relatively new and whilst there are scary statistics out there about elevated FLCs meaning increased likelihood of progression and increased likelihood of high risk cytogenetics, there isn't a huge amount of information to support it. Mine have been over 300 ever since the first measurement and so far haven't done me any harm. When they come out in the urine they are called Bence Jones protein and so far, mine don't show there.
In the UK, I don't think they routinely do a cytogenetics test at the first stage of diagnosis. They didn't for me, although everyone believed we were looking at MGUS. When I've asked my consultant about it, her view is it's not worth another bone marrow biopsy for until you reach the treatment stage.
And finally, I too am a supporter of curcumin. It won't do you any harm and it could help.
I hope this has helped.
All the best.
-
Aramis
Re: Hello, just diagnosed with asymptomatic myeloma
Hi Scott,
I too am a smoulderer (God, why does it sound so sexy when it is so difficult?!) and I also live in the UK.
When I read your post it reminded me so much of how I felt when I was first diagnosed in July 2009 ... like you from a random blood test when I hadn't been feeling too well on and off for 6 months.
There's so much I want to say to you and I'll probably forget half of it so feel free to ask any questions.
I agree with what other people have said about getting a second opinion. After a year of playing the waiting game, we finally did and I'm now under care at the Royal Marsden in Surrey with Prof. Morgan. It was the best move I made even though the hospital is further to travel, as they are fantastic there.
But let me start at the beginning and give you some of my background. I started with a paraprotein of around 32 g/l (3.2 g/dL) and all of my other functions were fine at the time. My bone marrow stood at 10%, so I got the label of a smoulderer. Since July 2009, my paraprotein rose slowly but steadily and is currently at 45 g/l (4.5 g/dL). My consultant was happy that, whilst it was high, it hadn't risen massively.
One of the key things to remember is that you can't really compare to other people as multiple myeloma seems to be so individual. So while for one person 45 might bring the CRAB symptoms, for people like me, it could be over 70 before I experience them. In fact, I know someone who wasn't treated until they reached over 70 g/l (7 g/dL).
This summer, my hemoglobin finally dropped from around 11.3 to 9.9 (over about 4 months) and all the talk went to me starting treatment. They were sure that it wouldn't go up again, and me and my husband started talking about how we would handle it, what we would do with the kids (I'm only 35 with 2 kids under 7) when it started, etc etc. (It was around this time I went to Prof. Morgan for a second opinion and he agreed with my old consultant).
But then, just as we were about to set the date for the cyclophosphamide, thalidomide, and dexamethasone (CTD) treatment to start, my hemoglobin went back up to 11.9! No one can explain why. It is just one of those things. So try to make sure you give it a chance to go back up before you start treatment would be my advice!
I have been retested for everything over the summer to make sure that the multiple myeloma isn't progressing faster than we thought and nearly everything is ok. My calcium, whilst high at 2.55, is fairly stable. My hemoglobin is around 11.3 (or was a month and a half ago). My kidneys are fine. And I have no lesions according to the latest MRI.
My light chains are at 430 and my consultant isn't too worried about that either.
The only thing they have picked up is that my bone marrow is now 50% abnormality. So I probably will start to see symptoms in the next year, but who knows. After all, they were convinced that my hemoglobin wouldn't go up and it did, so maybe my bone marrow will stay stable.
Through all of this I have taken curcumin till recently. Now I'm not sure it's helping, but I think the mind works wonders, so if you think it helps you, keep doing it. Take any opportunities you can until something says it isn't working is my philosophy!
The first 6 months for me were horrendous. I couldn't help but wonder how unfair it was that my family were going to have to go through this, I worried about the stuff I'd read on the Internet (don't do it!) about a 2-5 year prognosis, and I didn't know if I was coming or going. But slowly I learnt to live with it, with the regular check ups, and how to deal with the stress.
But it takes time. This is the beginning of a new journey for you and it's a tough one that's for sure.
In the summer I did the Yorkshire 3 Peaks Challenge and that gave me a real focus that stopped me being negative and helped me to be more positive. But it took me a while to be ready to do that. I'm finding it a bit tougher at the moment as I don't have anything like that coming up, so am more focused on what the next appointment will bring. But I even find this time easier now than I did 12 months ago.
Just remember that there are lots of positive stories out there too, but sometimes they're hidden away because people want to put multiple myeloma to one side when they're not actually suffering the symptom. But there are people who have smouldered for years and years, people who have had over 20 years even once they've had treatment, and people who are living their lives pretty normally.
It doesn't make the diagnosis for you easier, but at some stage I hope it will give you some hope.
Take care
Debs x
I too am a smoulderer (God, why does it sound so sexy when it is so difficult?!) and I also live in the UK.
When I read your post it reminded me so much of how I felt when I was first diagnosed in July 2009 ... like you from a random blood test when I hadn't been feeling too well on and off for 6 months.
There's so much I want to say to you and I'll probably forget half of it so feel free to ask any questions.
I agree with what other people have said about getting a second opinion. After a year of playing the waiting game, we finally did and I'm now under care at the Royal Marsden in Surrey with Prof. Morgan. It was the best move I made even though the hospital is further to travel, as they are fantastic there.
But let me start at the beginning and give you some of my background. I started with a paraprotein of around 32 g/l (3.2 g/dL) and all of my other functions were fine at the time. My bone marrow stood at 10%, so I got the label of a smoulderer. Since July 2009, my paraprotein rose slowly but steadily and is currently at 45 g/l (4.5 g/dL). My consultant was happy that, whilst it was high, it hadn't risen massively.
One of the key things to remember is that you can't really compare to other people as multiple myeloma seems to be so individual. So while for one person 45 might bring the CRAB symptoms, for people like me, it could be over 70 before I experience them. In fact, I know someone who wasn't treated until they reached over 70 g/l (7 g/dL).
This summer, my hemoglobin finally dropped from around 11.3 to 9.9 (over about 4 months) and all the talk went to me starting treatment. They were sure that it wouldn't go up again, and me and my husband started talking about how we would handle it, what we would do with the kids (I'm only 35 with 2 kids under 7) when it started, etc etc. (It was around this time I went to Prof. Morgan for a second opinion and he agreed with my old consultant).
But then, just as we were about to set the date for the cyclophosphamide, thalidomide, and dexamethasone (CTD) treatment to start, my hemoglobin went back up to 11.9! No one can explain why. It is just one of those things. So try to make sure you give it a chance to go back up before you start treatment would be my advice!
I have been retested for everything over the summer to make sure that the multiple myeloma isn't progressing faster than we thought and nearly everything is ok. My calcium, whilst high at 2.55, is fairly stable. My hemoglobin is around 11.3 (or was a month and a half ago). My kidneys are fine. And I have no lesions according to the latest MRI.
My light chains are at 430 and my consultant isn't too worried about that either.
The only thing they have picked up is that my bone marrow is now 50% abnormality. So I probably will start to see symptoms in the next year, but who knows. After all, they were convinced that my hemoglobin wouldn't go up and it did, so maybe my bone marrow will stay stable.
Through all of this I have taken curcumin till recently. Now I'm not sure it's helping, but I think the mind works wonders, so if you think it helps you, keep doing it. Take any opportunities you can until something says it isn't working is my philosophy!
The first 6 months for me were horrendous. I couldn't help but wonder how unfair it was that my family were going to have to go through this, I worried about the stuff I'd read on the Internet (don't do it!) about a 2-5 year prognosis, and I didn't know if I was coming or going. But slowly I learnt to live with it, with the regular check ups, and how to deal with the stress.
But it takes time. This is the beginning of a new journey for you and it's a tough one that's for sure.
In the summer I did the Yorkshire 3 Peaks Challenge and that gave me a real focus that stopped me being negative and helped me to be more positive. But it took me a while to be ready to do that. I'm finding it a bit tougher at the moment as I don't have anything like that coming up, so am more focused on what the next appointment will bring. But I even find this time easier now than I did 12 months ago.
Just remember that there are lots of positive stories out there too, but sometimes they're hidden away because people want to put multiple myeloma to one side when they're not actually suffering the symptom. But there are people who have smouldered for years and years, people who have had over 20 years even once they've had treatment, and people who are living their lives pretty normally.
It doesn't make the diagnosis for you easier, but at some stage I hope it will give you some hope.
Take care
Debs x
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hopefulmum - Name: Deb
- Who do you know with myeloma?: Myself other patients
- When were you/they diagnosed?: July 2009 with smoldering Myeloma
- Age at diagnosis: 34
Re: Hello, just diagnosed with asymptomatic myeloma
Hi all,
Bit of an update and answers for Aramis and Frank ...
Latest haemoglobin check shows 13.4 again. Thats a rise from 12.6 in 3 weeks, and is almost identical to the first check in June of this year. Debs, you were right, it did go up again in the same way yours did.
When I first posted I said that I thought the hospital were looking to treat me sooner rather than later even though I am a smoulderer. After the latest visit the consultant has said no, hemoglobin is up, so leave me be.
Because of the rate of change they had previously seen they had considered I ought to be treated and had got as far as putting my name forward for trial to start soon. That has been withdrawn. A big thank you to my blood!
Paraprotein is stable at 22 g/l (2.2 g/dL), albumin is also stable at 38, x-rays show no lesions.
Whilst at the appointment I dared ask about life expectancy, it's something that has been scaring me silly, reading old stats on the Internet isn't good!
The consultant used statistics to demonstrate her point and said it is difficult to say, and also she has to be careful what she says. Bottom line is for a younger smoulderer with treatment available in the UK, 10 years is a reasonable start point, probably more with the treatments that could be available in the future.
Its not something I have ever thought about until myeloma came along and, like you debs, I thought about my children, 4 and 5 years old, and how I would get through. I have some perspective now and feel like I can get on with life for a while longer. It's rather ironic that its taken me 42 years to feel every day I have is a good day, and not take it for granted.
I am also wondering what the deal is with curcumin. I am taking 2 x 1000 mg with a omega 3 oils 1000 mg three times a day. Has it made a difference, or is it simply down to chance, and my body's way of working? Way I see it is that there is nothing to lose, and lots to gain.
Look forward to hearing from you,
Scott
Bit of an update and answers for Aramis and Frank ...
Latest haemoglobin check shows 13.4 again. Thats a rise from 12.6 in 3 weeks, and is almost identical to the first check in June of this year. Debs, you were right, it did go up again in the same way yours did.
When I first posted I said that I thought the hospital were looking to treat me sooner rather than later even though I am a smoulderer. After the latest visit the consultant has said no, hemoglobin is up, so leave me be.
Because of the rate of change they had previously seen they had considered I ought to be treated and had got as far as putting my name forward for trial to start soon. That has been withdrawn. A big thank you to my blood!
Paraprotein is stable at 22 g/l (2.2 g/dL), albumin is also stable at 38, x-rays show no lesions.
Whilst at the appointment I dared ask about life expectancy, it's something that has been scaring me silly, reading old stats on the Internet isn't good!
The consultant used statistics to demonstrate her point and said it is difficult to say, and also she has to be careful what she says. Bottom line is for a younger smoulderer with treatment available in the UK, 10 years is a reasonable start point, probably more with the treatments that could be available in the future.
Its not something I have ever thought about until myeloma came along and, like you debs, I thought about my children, 4 and 5 years old, and how I would get through. I have some perspective now and feel like I can get on with life for a while longer. It's rather ironic that its taken me 42 years to feel every day I have is a good day, and not take it for granted.
I am also wondering what the deal is with curcumin. I am taking 2 x 1000 mg with a omega 3 oils 1000 mg three times a day. Has it made a difference, or is it simply down to chance, and my body's way of working? Way I see it is that there is nothing to lose, and lots to gain.
Look forward to hearing from you,
Scott
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scoobydoo - Name: Scott
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2010
- Age at diagnosis: 42
Re: Hello, just diagnosed with asymptomatic myeloma
Hi Scott, I'm glad to hear your blood work is cooperating. That's great news, and I'm sure a huge relief for you and your family.
It seems like everyone immediately scours the internet for survival rates as soon as they are diagnosed and then are scared out of their minds by the old stats that they find. You definitely have to look to the latest stats and realize that in a year from now, even those will be outdated. I've been hearing survival rates of 7-10 years for myeloma patients, at least those without chromosome issues. And it might easily take several years for you to progress from smoldering to active myeloma. By then, I'd guess survival will be even longer. I have a new appreciation for every day, but I'm not counting on going anywhere any time soon.
There's definitely a lot of buzz about curcumin, but not much in the way of clinical studies to back it up, mostly people with smoldering myeloma who take it and haven't progressed to myeloma - but hey, there's nothing to turn your nose up about that. The reason why most docs are hesitant about using curcumin is that it might interact with myeloma treatments, but if you're not being treated because you're only smoldering, maybe it's worth taking curcumin, in reasonable quantities anyway.
You might find this forum discussion about curcumin helpful.
A couple of patients have shared their experiences with curcumin, And Dr. Lacy from the Mayo Clinic explained her hesitations about using it, even for MGUS or smoldering patients. It might suppress the immune system. Why is it always so hard to figure out what to do?
It seems like everyone immediately scours the internet for survival rates as soon as they are diagnosed and then are scared out of their minds by the old stats that they find. You definitely have to look to the latest stats and realize that in a year from now, even those will be outdated. I've been hearing survival rates of 7-10 years for myeloma patients, at least those without chromosome issues. And it might easily take several years for you to progress from smoldering to active myeloma. By then, I'd guess survival will be even longer. I have a new appreciation for every day, but I'm not counting on going anywhere any time soon.
There's definitely a lot of buzz about curcumin, but not much in the way of clinical studies to back it up, mostly people with smoldering myeloma who take it and haven't progressed to myeloma - but hey, there's nothing to turn your nose up about that. The reason why most docs are hesitant about using curcumin is that it might interact with myeloma treatments, but if you're not being treated because you're only smoldering, maybe it's worth taking curcumin, in reasonable quantities anyway.
You might find this forum discussion about curcumin helpful.
A couple of patients have shared their experiences with curcumin, And Dr. Lacy from the Mayo Clinic explained her hesitations about using it, even for MGUS or smoldering patients. It might suppress the immune system. Why is it always so hard to figure out what to do?
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smoldering Frank - Name: Frank
- When were you/they diagnosed?: Jan 22, 2010
- Age at diagnosis: 56
Re: Hello, just diagnosed with asymptomatic myeloma
Hello Scott,
I'm absolutely delighted for you. Long may it continue.
I have been impressed by what I have heard about experiences with IP6 / inositol, and have decided that if / when my blood test results look like things are moving in the wrong direction, I'm going to give it a go. I have been taking curcumin for nearly 3 years now, sometimes more, sometimes less. For the last 3 months I've come down to 4 g / day from 8 g / day because I'm not persuaded the dose needs to be that high, but we'll see what the next blood test tells us!
With very best wishes
I'm absolutely delighted for you. Long may it continue.
I have been impressed by what I have heard about experiences with IP6 / inositol, and have decided that if / when my blood test results look like things are moving in the wrong direction, I'm going to give it a go. I have been taking curcumin for nearly 3 years now, sometimes more, sometimes less. For the last 3 months I've come down to 4 g / day from 8 g / day because I'm not persuaded the dose needs to be that high, but we'll see what the next blood test tells us!
With very best wishes
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Aramis
11 posts
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