Mgus

Hi all,

I am Jane from the UK,I was diagnosed with MGUS in July 2002 at the age of 37. At diagnosis my IGg was 16 (UK measurements) and has been steadily rising and my last result was IGg 44.8. I am now also showing what I presume is a small amount 0.06 of Bence Jones protein in my urine, this was first detected in November 2007. I have recently had a bone marrow exam and bloodwork done and I am waiting for the results, I have had to wait a whole month and my results are due on 28th February. At last count over a year ago my bone marrow plasma was at 13% so I am eager to find out what it is now.

Can anyone shed any light on my results and my levels, I am confused and my Haemotologist has concerns because of my reurrent infections, fatigue and back, leg and hip pain. I have also had a couple of night sweats recently and I keep coming over boiling hot and sweaty during the day. I am not anaemic, I have no bone lesions and I have normal kidney function. Any help would be greatly appreciated.

Love to you all

From Jane xxx

It possible it could have progressed but read all you can about Multiple Myeloma and educate yourself. The numbers here differe but you have had a significant jump. I wrote you a private email and I want you to get well .. This is a fearful time and believe me it is not easy. take care mms

 

On 2/14/2008 JaneMGUSuk wrote:

Hi all,

I am Jane from the UK,I was diagnosed with MGUS in July 2002 at the age of 37. At diagnosis my IGg was 16 (UK measurements) and has been steadily rising and my last result was IGg 44.8. I am now also showing what I presume is a small amount 0.06 of Bence Jones protein in my urine, this was first detected in November 2007. I have recently had a bone marrow exam and bloodwork done and I am waiting for the results, I have had to wait a whole month and my results are due on 28th February. At last count over a year ago my bone marrow plasma was at 13% so I am eager to find out what it is now.

Can anyone shed any light on my results and my levels, I am confused and my Haemotologist has concerns because of my reurrent infections, fatigue and back, leg and hip pain. I have also had a couple of night sweats recently and I keep coming over boiling hot and sweaty during the day. I am not anaemic, I have no bone lesions and I have normal kidney function. Any help would be greatly appreciated.

Love to you all

From Jane xxx

 

 

On 2/14/2008 JaneMGUSuk wrote:

Hi all,

I am Jane from the UK,I was diagnosed with MGUS in July 2002 at the age of 37. At diagnosis my IGg was 16 (UK measurements) and has been steadily rising and my last result was IGg 44.8. I am now also showing what I presume is a small amount 0.06 of Bence Jones protein in my urine, this was first detected in November 2007. I have recently had a bone marrow exam and bloodwork done and I am waiting for the results, I have had to wait a whole month and my results are due on 28th February. At last count over a year ago my bone marrow plasma was at 13% so I am eager to find out what it is now.

Can anyone shed any light on my results and my levels, I am confused and my Haemotologist has concerns because of my reurrent infections, fatigue and back, leg and hip pain. I have also had a couple of night sweats recently and I keep coming over boiling hot and sweaty during the day. I am not anaemic, I have no bone lesions and I have normal kidney function. Any help would be greatly appreciated.

Love to you all

From Jane xxx

 

Hello Jane From The U.K. My name is Eddie from California USA. My wife was diagnosed with Multiple Myeloma in March of 1996.She has survived this Cancer for almost 12 years now. She was 33 yrs. old when she was diagnosed.I will Pray for you Jane and ask God to bless you with the same miracle that he blessed my wife with.Be strong and have faith you will also survive! As a Husband & Caergiver for my wife I know what you & your Family are going through. Please feel free to write back to me I need support also.

 

On 2/15/2008 BIGELO13 wrote:

 

On 2/14/2008 JaneMGUSuk wrote:

Hi all,

I am Jane from the UK,I was diagnosed with MGUS in July 2002 at the age of 37. At diagnosis my IGg was 16 (UK measurements) and has been steadily rising and my last result was IGg 44.8. I am now also showing what I presume is a small amount 0.06 of Bence Jones protein in my urine, this was first detected in November 2007. I have recently had a bone marrow exam and bloodwork done and I am waiting for the results, I have had to wait a whole month and my results are due on 28th February. At last count over a year ago my bone marrow plasma was at 13% so I am eager to find out what it is now.

Can anyone shed any light on my results and my levels, I am confused and my Haemotologist has concerns because of my reurrent infections, fatigue and back, leg and hip pain. I have also had a couple of night sweats recently and I keep coming over boiling hot and sweaty during the day. I am not anaemic, I have no bone lesions and I have normal kidney function. Any help would be greatly appreciated.

Love to you all

From Jane xxx

Thank you so much Eddie,

I am so pleased to hear  about your Wife, she is a true inspiration to anyone reading these posts. I feel like a bit of a fraud coming onto this site as I only have MGUS and not full blown myeloma, but with this strange MGUS thing, I never know what my next clinic visit will bring. I am so grateful for your prayers, I am amazed how many many American people have God in their lives and have their faith to help them and others. How is your Wife at the moment? Is she having treatment and is the treatment helping? I dont require treatment, but I am always interested in therapies for myeloma.

It must have been a real tough time for you and your wife finding out that she had myeloma at such a young age, it is almost unheard of in someone so young. How did the doctors discover the myeloma because at her young age the doctors must have been looking for something else and found the myeloma by chance? You must be a really strong couple and all the stronger for going through this whole experience together, with the help of each other and your faith in God. I hope that your strength, faith and love of life keep you both together until your old and grey and drawing your old age pensions.

Thanks again, Best wishes and love from Jane in the UK  

Hello Jane From The U.K. My name is Eddie from California USA. My wife was diagnosed with Multiple Myeloma in March of 1996.She has survived this Cancer for almost 12 years now. She was 33 yrs. old when she was diagnosed.I will Pray for you Jane and ask God to bless you with the same miracle that he blessed my wife with.Be strong and have faith you will also survive! As a Husband & Caergiver for my wife I know what you & your Family are going through. Please feel free to write back to me I need support also.

 

 

On 2/15/2008 BIGELO13 wrote:

 

On 2/14/2008 JaneMGUSuk wrote:

Hi all,

I am Jane from the UK,I was diagnosed with MGUS in July 2002 at the age of 37. At diagnosis my IGg was 16 (UK measurements) and has been steadily rising and my last result was IGg 44.8. I am now also showing what I presume is a small amount 0.06 of Bence Jones protein in my urine, this was first detected in November 2007. I have recently had a bone marrow exam and bloodwork done and I am waiting for the results, I have had to wait a whole month and my results are due on 28th February. At last count over a year ago my bone marrow plasma was at 13% so I am eager to find out what it is now.

Can anyone shed any light on my results and my levels, I am confused and my Haemotologist has concerns because of my reurrent infections, fatigue and back, leg and hip pain. I have also had a couple of night sweats recently and I keep coming over boiling hot and sweaty during the day. I am not anaemic, I have no bone lesions and I have normal kidney function. Any help would be greatly appreciated.

Love to you all

From Jane xxx

 

Hello Jane From The U.K. My name is Eddie from California USA. My wife was diagnosed with Multiple Myeloma in March of 1996.She has survived this Cancer for almost 12 years now. She was 33 yrs. old when she was diagnosed.I will Pray for you Jane and ask God to bless you with the same miracle that he blessed my wife with.Be strong and have faith you will also survive! As a Husband & Caergiver for my wife I know what you & your Family are going through. Please feel free to write back to me I need support also.

Hello Eddie from California,

My name is Nelle from South Carolina.  It is so good to hear that your wife has survived for almost 12 years.  My husband who is now 75 has had it for 3 years.  He's had a stem cell transplant which had him in remission for 1.5 years and has just finished up 4 rounds of Revlimid after it flared up again last July.  Like you, we praise God for what He has done and for the drs. that He has led us to.  I have been amazed at how many people in our area have been diagnosed with multiple myeloma.  My husband's father was diagnosed with it 22 years ago but it was too late for treatment to help him.  Back then, there was very little available. 

My husband, who is also legally blind, has a lot of fatigue.  We haven't found anything to counter that.  I also have to be very careful to not bring home germs - I work for a local school district so I am out in the schools quite often.  There is a lot of flu going around so I have limited my school time as much as possible.  I'd hate to bring something home to him that would be harmful. 

I am an 11 year breast cancer survivor and I think that being the caregiver is harder than being the patient!! 

Hang in there!  I'm so thankful to have this message board as one source of support.  I do have children, siblings, church and other friends but there is something about being in touch with someone who really knows what you go through.

 

Hi Jane!  I have had MM for four years now, and noticed that you too are suffering from one of my main annoyances, namely the hot flushes!  And you are living in England, where you are experiencing winter - so you shouldn't be having these hot flushes!!  I'm in Australia - its summer - and I have these daily, sometimes 2-3 times a day.  I have posted questions about this on this board and it seems to be a factor of MM, but most people feel that it is better during winter.  There doesn't seem to be a way of controling this problem, just to carry a dry face washer to mop up your dripping head! 

It sounds as though things are starting to move - fatigue, bone problems, etc.  But don't worry about waiting a month - time is not that short!  Once you have the results then decisions can be made about what form of treatment might be the best at this stage.  Have you had anyone look into your bone pain/probems?  I have found that the durogesic patches (Fentenal) work really well to control bone pain, just increasing until you reach a level that works for you. Pain is so individual, some people find 25mg is enough for them, others need lots more.  But a lot of people a afraid to use the patches because they feel that they will be considered drug addicts, which is certainly not the case!  You are in early stages and we are really fortunate that research is progressing very quickly with all sorts of new drug combinations being approved and working well -- its just a matter of finding what works best for you!  While MM is still a 'terminal' illness, that doesn't necessarily mean days/weeks/months! As you can see from others who have responded - time can be calculated in years these days!!  I personally believe that it won't be long before MM is considered a 'chronic' disease, much like diabetes.  Hang in there - the 27th isn't so far away, then you will know what your choices really are. It doesn't pay to worry about what 'might' be, it just adds stress to an already stressful situation.  Best wishes - and keep cheerful!!  Cath  

 

On 2/22/2008 poppy/cath wrote:

Hi Jane!  I have had MM for four years now, and noticed that you too are suffering from one of my main annoyances, namely the hot flushes!  And you are living in England, where you are experiencing winter - so you shouldn't be having these hot flushes!!  I'm in Australia - its summer - and I have these daily, sometimes 2-3 times a day.  I have posted questions about this on this board and it seems to be a factor of MM, but most people feel that it is better during winter.  There doesn't seem to be a way of controling this problem, just to carry a dry face washer to mop up your dripping head! 

It sounds as though things are starting to move - fatigue, bone problems, etc.  But don't worry about waiting a month - time is not that short!  Once you have the results then decisions can be made about what form of treatment might be the best at this stage.  Have you had anyone look into your bone pain/probems?  I have found that the durogesic patches (Fentenal) work really well to control bone pain, just increasing until you reach a level that works for you. Pain is so individual, some people find 25mg is enough for them, others need lots more.  But a lot of people a afraid to use the patches because they feel that they will be considered drug addicts, which is certainly not the case!  You are in early stages and we are really fortunate that research is progressing very quickly with all sorts of new drug combinations being approved and working well -- its just a matter of finding what works best for you!  While MM is still a 'terminal' illness, that doesn't necessarily mean days/weeks/months! As you can see from others who have responded - time can be calculated in years these days!!  I personally believe that it won't be long before MM is considered a 'chronic' disease, much like diabetes.  Hang in there - the 27th isn't so far away, then you will know what your choices really are. It doesn't pay to worry about what 'might' be, it just adds stress to an already stressful situation.  Best wishes - and keep cheerful!!  Cath  

 

Hi Cath,

Thanks so much for your reply. The hot flushes are annoying, a few days ago I had a lovely relaxing bath and felt refreshed and an hour later I was again dripping with sweat and had to take a shower, its annoying feeling sweaty and dirty all the time. I am wondering if it might be early menopause, I sure hope so because that would be one less problem to deal with each month:-)

Today I have woken up with yet another infection, I have been having pain in my jaw right next to my ear so I went to the doctors today she said my ear is very red inside so I am now on yet another course of antibiotics. I feel generally ill today, achy legs and back, painful glands and face ache near my bad ear but never mind once the antibiotics kick in I shall be fine and we all have our off days.

I am obviously hoping that my results next week bring good news and that I still only have MGUS, but in my mind and my gut feeling tells me things may have changed, I sure hope my female intuition is wrong for once, but I will cross that bridge if and when I come to it. I am a positive person so I also believe that a cure is on its way for MM and I believe one day they will be able to prevent MGUS and Smouldering Myeloma from turning into full blown MM. Until then patients will continue the fight, and when and if my time comes I will fight too. Until then I refuse to be miserable, I am not wasting my time with that, I carry on as normal, allow myself the occasional off day and remain my cheerful old self.

How great it must be to live in Australia, its a country I would love to visit someday. You have the most wonderful animals and sealife and as an animal lover I would love to see them in the wild or in the bush as you would say. Summer seems a long time ago now, we are deep in winter here in the UK, its not too bad today its 13 degrees but yesterday it was only 2 degrees so its changeable here at present, even winter in Australia is quite pleasant so I have been told anyway.

Thanks again for the reply and I send you my best wishes from the UK.

Take care from Jane x

Hi Jane! 

Just one comment about your antibiotics, they may not be working because your immunte system may be compromised which makes it difficult for them to kick in they way they may have done in the past.  I know that I need to start taking them as soon as I feel that I may need them, otherwise I have to use at least two rounds before I start to get relief.  When I had pneumonia last year it took almost a week before the highest power drugs actually started to work -- I was really scared. Now, I keep Keflex 500mg on hand, especially for weekends when its not easy to see a doctor. 

Australia is beautiful and the wildlife has to be seen to be believed!  I remember the first time I saw parrots in the wild, it was just magic.  Now galahs, cockatoos, budgies, rosellas, etc. are normal fare.  Bob had to cover our bird food the other day because of all the pink and gray galahs that came and started eating our trees as well as the food!  He felt that, at the rate they were going, the tress would all die.  The other day our daughter, Kate, had a Koala in her backyard and she lives in the city of Adelaide!!  A few days later she had a big 'brown' snake in the garage, but fortunately the local snake catcher came and caught it.   So, even in urban areas, we do get 'wild life'!!.  I remember one morning when I was heading down the main street of Bendigo I saw a 6 foot tall kangaroo hopping alongside of me!!  That was quite a surprise, because they are usually in the local bush but not in the town.  

As for our weather, you are right there too, for we may have extreme summers where the heat is often over 100F, but in winter we only have snow in the alps and the weather, though cool, is rarely under 20F.  We use Centagrade here, so today its about 35C and tonight perhaps about 22C, but in winter it will be a high of 23C and a low in the teens by evening.  Is amazing how many people come down under for a holiday these days because Australia really is a magic place!!  I hope that you do make it one day for I know that your'll love it!!   

Good luck with the outcome of your doctor's visit.  And don't worry, there are lots of things that are now being used to treat MM -- but stress doesn't help and worring about the unknown is certainly stressful!  So wait until you have facts, then you can start to plan.  Hang in there Jane, my thoughts and prayers are with you, Cath

Hi Cath,

I think you maybe right about the antibiotics, I have not been getting the normal response with them like I used to do. I will speak with my Haemo about having some on standby for emergencies and holidays, thanks for the advice.

Australia sounds wonderful, koalas and kangaroos right on your doorstep and colourful birds that is so cool. I like reptiles as well so the snake would have facinated me but I would have called the snake catcher guy too. poisonous spiders don't appeal to me much, I am not scared of spiders as I cured my phobia of them but spiders are small and hide in places so I can imagine they can be a bit worrying, at least snkes are big enough to see. Lizards are my absolute favourite, especially chameleons, I adore their eyes and their colours.

Only five days to go until my results, I am feeling a little more positive about things now, I have calmed down a little and I am just going to take it in my stride and worry about it if I get a bad result. I know that worrying isn't going to change anything except make me miserable and stressed out so I refuse to worry now, and I may be worrying over nothing anyway.

Thanks for your lovely reply and your bit of insight into Australia, Love and best wishes from Jane x

 Ladies I have been reading your posts on MGUS and of course wish the best for you and Jane. I add Olive leaf drop liquid 10 drops 3 times the day I start to feel sick. We, who have MM, have weak lungs especially if your spine collapses and atelectisis sets in from the lower lobes  due to being crunched. Olive LEaf drops are natural, so will not replace antibiotics but are an adjunct therapy. My weakness is my chest and lungs so I too am on top the minute I have a hint of infection.

When I first came to the US people would ask me if Kangaroo's jumped down the main street of Sydney.  I would have a good laugh but there you are, in a metro area, Kangaroo's jumping down the street.  It is the same here the deer habitat is getting smaller so they are haunting built up areas. this winter we were getting daily elk and deer warnings, as the winter was so severe, they would not go back into the hills.  O yes when I first came here (Before Crocodile Dundee) and the Shrimp on the Barbie Ad by Paul  Hogan I used to asked what language we spoke.  Now of course Aussie can speak funny but not that  bad.  After Paul Hogan ran his ads, people did not ask as much...MMS

On 2/22/2008 JaneMGUSuk wrote:

 

On 2/22/2008 poppy/cath wrote:

Hi Jane!  I have had MM for four years now, and noticed that you too are suffering from one of my main annoyances, namely the hot flushes!  And you are living in England, where you are experiencing winter - so you shouldn't be having these hot flushes!!  I'm in Australia - its summer - and I have these daily, sometimes 2-3 times a day.  I have posted questions about this on this board and it seems to be a factor of MM, but most people feel that it is better during winter.  There doesn't seem to be a way of controling this problem, just to carry a dry face washer to mop up your dripping head! 

It sounds as though things are starting to move - fatigue, bone problems, etc.  But don't worry about waiting a month - time is not that short!  Once you have the results then decisions can be made about what form of treatment might be the best at this stage.  Have you had anyone look into your bone pain/probems?  I have found that the durogesic patches (Fentenal) work really well to control bone pain, just increasing until you reach a level that works for you. Pain is so individual, some people find 25mg is enough for them, others need lots more.  But a lot of people a afraid to use the patches because they feel that they will be considered drug addicts, which is certainly not the case!  You are in early stages and we are really fortunate that research is progressing very quickly with all sorts of new drug combinations being approved and working well -- its just a matter of finding what works best for you!  While MM is still a 'terminal' illness, that doesn't necessarily mean days/weeks/months! As you can see from others who have responded - time can be calculated in years these days!!  I personally believe that it won't be long before MM is considered a 'chronic' disease, much like diabetes.  Hang in there - the 27th isn't so far away, then you will know what your choices really are. It doesn't pay to worry about what 'might' be, it just adds stress to an already stressful situation.  Best wishes - and keep cheerful!!  Cath  

 

Hi Cath,

Thanks so much for your reply. The hot flushes are annoying, a few days ago I had a lovely relaxing bath and felt refreshed and an hour later I was again dripping with sweat and had to take a shower, its annoying feeling sweaty and dirty all the time. I am wondering if it might be early menopause, I sure hope so because that would be one less problem to deal with each month:-)

Today I have woken up with yet another infection, I have been having pain in my jaw right next to my ear so I went to the doctors today she said my ear is very red inside so I am now on yet another course of antibiotics. I feel generally ill today, achy legs and back, painful glands and face ache near my bad ear but never mind once the antibiotics kick in I shall be fine and we all have our off days.

I am obviously hoping that my results next week bring good news and that I still only have MGUS, but in my mind and my gut feeling tells me things may have changed, I sure hope my female intuition is wrong for once, but I will cross that bridge if and when I come to it. I am a positive person so I also believe that a cure is on its way for MM and I believe one day they will be able to prevent MGUS and Smouldering Myeloma from turning into full blown MM. Until then patients will continue the fight, and when and if my time comes I will fight too. Until then I refuse to be miserable, I am not wasting my time with that, I carry on as normal, allow myself the occasional off day and remain my cheerful old self.

How great it must be to live in Australia, its a country I would love to visit someday. You have the most wonderful animals and sealife and as an animal lover I would love to see them in the wild or in the bush as you would say. Summer seems a long time ago now, we are deep in winter here in the UK, its not too bad today its 13 degrees but yesterday it was only 2 degrees so its changeable here at present, even winter in Australia is quite pleasant so I have been told anyway.

Thanks again for the reply and I send you my best wishes from the UK.

Take care from Jane x