Hi everyone,
I am from the UK, I was diagnosed with smoldering myeloma nearly 2 weeks ago (1 June, 2016), so I am in the initial overwhelming stage.
I don't know what my results are like you guys do on here. My hematologist tells me I may be at this stage for 'years and years and years'! He wants to see me every 10 weeks.
I have told my husband but not my children as yet, or my work colleagues.
My mum had myeloma though we only knew for 3 weeks before she passed away in 2007 at 77 years old (I am 57 yrs).
I am having a bad night feeling very much afraid, even though I know people who are in end stage cancer, which makes feel guilty, as I am not even at 1st stage of cancer. I suppose it's the fear of the unknown.
The reason I know I'm at the smoldering stage is my sister was having tests for RA and it showed in blood tests that she had a raised protein. I also have RA but don't have regular blood tests like my sister, so asked my GP for them. Through the tests they did I ended up seeing the hematologists.
I am sure I will will feel better about things soon. I work in social care, so I am well aware there are people in worst situations than myself.
I hope you do not mind me feeling a bit low.
Have a good eveing everyone xxx
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7 posts
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Elaine2033 - Name: Elaine
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoulder myeloma may 2016 myeloma may 17
- Age at diagnosis: 57
Re: Just diagnosed as smoldering & feeling overwhelmed
Elaine,
Welcome to the forum. I am sorry you have to be here.
There is nothing to be sorry for in terms of your feelings. It is perfectly normal to feel "low" after being diagnosed with a "possible" malignancy. Smoldering myeloma is not really considered cancer, and your doc is right – many people smolder and never progress. Also, trials are being conducted to test whether "high risk" smoldering multiple myeloma should be actively treated with the same drugs used to treat symptomatic (active) multiple myeloma. So it is possible that if these drugs prove to be effective, fewer smolderers will actually progress to symptomatic multiple myeloma.
I don't know how it works in your country regarding health care, but I hope you are in the care of a hematologist who regularly sees patients with MGUS, smoldering multiple myeloma, and symptomatic multiple myeloma. There is no substitute for specific experience.
Have you had all of the testing, i.e., bone marrow biopsy, imaging (xray / CT / MRI / PET)? What type of smoldering multiple myeloma do you have?
I also lost a parent to multiple myeloma – my Dad in 1969. He was diagnosed at 47 and lived three years, which was a long time in those days. The treatments (if you could call them that) were pretty primitive. When I was diagnosed 2 years ago at age 59, of course all I could think about was how he suffered and died so young.
It takes quite awhile to come to terms with things. Even now, I have bad days where I find it difficult to cope and I want to hide from the world.
As you go along, you will find there are some people who can "handle" your situation, and some who can't. You will know the difference. I hope you have a supportive family and some friends you can talk to. Since you are in the social care system, you know how important that is. If you feel the need, get counseling for yourself. You don't have to face this alone.
Let us know how you are doing. I hope you smolder for a very, very long time!
Best, Ellen Harris
Welcome to the forum. I am sorry you have to be here.
There is nothing to be sorry for in terms of your feelings. It is perfectly normal to feel "low" after being diagnosed with a "possible" malignancy. Smoldering myeloma is not really considered cancer, and your doc is right – many people smolder and never progress. Also, trials are being conducted to test whether "high risk" smoldering multiple myeloma should be actively treated with the same drugs used to treat symptomatic (active) multiple myeloma. So it is possible that if these drugs prove to be effective, fewer smolderers will actually progress to symptomatic multiple myeloma.
I don't know how it works in your country regarding health care, but I hope you are in the care of a hematologist who regularly sees patients with MGUS, smoldering multiple myeloma, and symptomatic multiple myeloma. There is no substitute for specific experience.
Have you had all of the testing, i.e., bone marrow biopsy, imaging (xray / CT / MRI / PET)? What type of smoldering multiple myeloma do you have?
I also lost a parent to multiple myeloma – my Dad in 1969. He was diagnosed at 47 and lived three years, which was a long time in those days. The treatments (if you could call them that) were pretty primitive. When I was diagnosed 2 years ago at age 59, of course all I could think about was how he suffered and died so young.
It takes quite awhile to come to terms with things. Even now, I have bad days where I find it difficult to cope and I want to hide from the world.
As you go along, you will find there are some people who can "handle" your situation, and some who can't. You will know the difference. I hope you have a supportive family and some friends you can talk to. Since you are in the social care system, you know how important that is. If you feel the need, get counseling for yourself. You don't have to face this alone.
Let us know how you are doing. I hope you smolder for a very, very long time!
Best, Ellen Harris
Re: Just diagnosed as smoldering & feeling overwhelmed
Thank you Ellen for your reply
I was having a bit of a wobble. I realise it is early days for me. I am lucky to know at such an early stage where I can be monitored and treated as soon as it is necessary.
I had skeletal survey xrays, a bone marrow biopsy, and an MRI scan, plus blood tests. I was never told what the tests showed or what type of smoldering myeloma I have. To be honest, I didn't have the confidence to ask and also I wasn't aware there were different types. I will see my GP and ask for a copy of the consultants's report. My GP will be able help with those questions I hope.
I will tell my daughters soon. I think I just need time to get my head round it a bit more. Then will tell just a few close friends. I am not sure about work as I am in a difficult situation which is too long to explain in detail, but I will need to make some decisions soon.
I will let you know if I get any answers from my GP or if I don't, which maybe a possibility.
Thank you Elaine.
I was having a bit of a wobble. I realise it is early days for me. I am lucky to know at such an early stage where I can be monitored and treated as soon as it is necessary.
I had skeletal survey xrays, a bone marrow biopsy, and an MRI scan, plus blood tests. I was never told what the tests showed or what type of smoldering myeloma I have. To be honest, I didn't have the confidence to ask and also I wasn't aware there were different types. I will see my GP and ask for a copy of the consultants's report. My GP will be able help with those questions I hope.
I will tell my daughters soon. I think I just need time to get my head round it a bit more. Then will tell just a few close friends. I am not sure about work as I am in a difficult situation which is too long to explain in detail, but I will need to make some decisions soon.
I will let you know if I get any answers from my GP or if I don't, which maybe a possibility.
Thank you Elaine.
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Elaine2033 - Name: Elaine
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoulder myeloma may 2016 myeloma may 17
- Age at diagnosis: 57
Re: Just diagnosed as smoldering & feeling overwhelmed
Elaine,
I was in your shoes 2 years ago when I got my smoldering diagnosis. I could barely function for several months afterward. Obviously, I told my husband. I told my parents, my in-laws, and my boss (no one else at work). I drew up my will, my health care directive, etc. I thought I was going to die soon.
And here I am, 2 years later with life basically back to normal except for doctor visits and lab testing every 3 months. My diagnosis doesn't consume my thoughts, I continue to exercise 5-6 days a week like I always have. I am certainly more careful with my diet and take a few extra supplements than I did before and I wash my hands more frequently. That's it. I don't get sick, I don't have any pain, I feel great. My lab results are stable.
But getting to this point was tough. What helped me was one day I realized that the day after I got my diagnosis, I didn't feel any differently than I did the day before. I think that's when I realized that I was going to be okay. After that, I gradually got my life back to normal.
You should try to find out as much as possible about myeloma. Read this forum, post questions and you get lots of good answers. Most importantly, you have to have the confidence to ask questions of your doctors. After all, it's your health. Write down questions for your doctor so you don't forget any and if you can't get answers then find someone (another doctor, a specialist) who can provide those answers.
Then try to get your life back on track. Like I said, it's hard. But you can do it. It just takes time.
I was in your shoes 2 years ago when I got my smoldering diagnosis. I could barely function for several months afterward. Obviously, I told my husband. I told my parents, my in-laws, and my boss (no one else at work). I drew up my will, my health care directive, etc. I thought I was going to die soon.
And here I am, 2 years later with life basically back to normal except for doctor visits and lab testing every 3 months. My diagnosis doesn't consume my thoughts, I continue to exercise 5-6 days a week like I always have. I am certainly more careful with my diet and take a few extra supplements than I did before and I wash my hands more frequently. That's it. I don't get sick, I don't have any pain, I feel great. My lab results are stable.
But getting to this point was tough. What helped me was one day I realized that the day after I got my diagnosis, I didn't feel any differently than I did the day before. I think that's when I realized that I was going to be okay. After that, I gradually got my life back to normal.
You should try to find out as much as possible about myeloma. Read this forum, post questions and you get lots of good answers. Most importantly, you have to have the confidence to ask questions of your doctors. After all, it's your health. Write down questions for your doctor so you don't forget any and if you can't get answers then find someone (another doctor, a specialist) who can provide those answers.
Then try to get your life back on track. Like I said, it's hard. But you can do it. It just takes time.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Just diagnosed as smoldering & feeling overwhelmed
Hi Fingerscrossed,
Thank you for your reply. I really appreciate the advice and will take your points on board. I have looked on this forum and have learnt quite lot already. I want to be able to park it away to back of my mind so it doesn't take up my thoughts 24/7. I agree that nothing really changed; I too don't feel any different.
I know I will worry when I see my haematologist and have my bloods etc done every 10 weeks, but at least it is being monitored. I have only seen my haematologist twice as my GP did the ground first. I am sure once I feel confident with him I will ask questions and write them down before I go as you suggested.
I am not ready yet to tell people. I just feel its too early and difficult to explain.
I had wondered about exercise. I have let it slip lately due to too much work and worry about the tests I was having etc. I am going to make time to keep myself fit and as healthy as I can.
I see some people take curcumin and other supplements. I will look into these and ask my doctor's advice too.
I am sure I will have bad days but I know I am luckier than my mum was and others I know. I will just take it one day at a time and be thankful I can do that
Thank you for taking time to reply. I hope you are keeping well.
Elaine
Thank you for your reply. I really appreciate the advice and will take your points on board. I have looked on this forum and have learnt quite lot already. I want to be able to park it away to back of my mind so it doesn't take up my thoughts 24/7. I agree that nothing really changed; I too don't feel any different.
I know I will worry when I see my haematologist and have my bloods etc done every 10 weeks, but at least it is being monitored. I have only seen my haematologist twice as my GP did the ground first. I am sure once I feel confident with him I will ask questions and write them down before I go as you suggested.
I am not ready yet to tell people. I just feel its too early and difficult to explain.
I had wondered about exercise. I have let it slip lately due to too much work and worry about the tests I was having etc. I am going to make time to keep myself fit and as healthy as I can.
I see some people take curcumin and other supplements. I will look into these and ask my doctor's advice too.
I am sure I will have bad days but I know I am luckier than my mum was and others I know. I will just take it one day at a time and be thankful I can do that
Thank you for taking time to reply. I hope you are keeping well.
Elaine
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Elaine2033 - Name: Elaine
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoulder myeloma may 2016 myeloma may 17
- Age at diagnosis: 57
Re: Just diagnosed as smoldering & feeling overwhelmed
Hi Elaine,
I consider myself a Newbie even though I am now in my second year since my body was falling apart and not knowing why after repeated trips to the emergency room.
It all started for me with fracturing 3 vertebrae in my neck in June 2015, but I wasn't diagnosed with spinal stenosis until late September. In November 2015, I was tested for multiple myeloma. In December I was told MGUS. In January I was told smoldering multiple myeloma. In March, I was upgraded to high-risk smoldering multiple myeloma.
I have testing every 6 weeks. It is exhausting. I go tomorrow to give my blood, I get the results on the 30th, If I am JUST high-risk smoldering, then I will be granted the month of August to LIVE until I go back in September and repeat the cycle all over.
I have never been so emotionally impacted by something in my life. I feel like I am weighed down with sandbags that I can only take off once, every 2 months, and run like hell the one month. For me, it will be August – that is, if my labs from next week are stable at high-risk smoldering when I see my multiple myeloma specialist on the 30th.
I am a survivor of major trauma and a very strong woman. I am the mother of a child who has been on palliative care and NOTHING has messed me up emotionally more than knowing that multiple myeloma is IN my bone marrow, but not to the levels that anything can be done, but is IN my bone marrow to the point that I have bones break, neuropathy in my feet, leg, hands, I have vision issues from viscosity, and many other symptoms of multiple myeloma, but I know it all comes down to CRAB and I am thankful every day and even type this with baited breath that my blood drawn tomorrow will keep me at high-risk smoldering and show no progression.
I WILL figure out my new normal of running / living every other month, but it is so different than how I anticipated my 40s to be. I was planned on doing a cartwheel on my 50th birthday. Now, I pray I will still be "just" high-risk smoldering when the magical day comes.
I am so new, I doubt I can offer much, but I am here for you!
I consider myself a Newbie even though I am now in my second year since my body was falling apart and not knowing why after repeated trips to the emergency room.
It all started for me with fracturing 3 vertebrae in my neck in June 2015, but I wasn't diagnosed with spinal stenosis until late September. In November 2015, I was tested for multiple myeloma. In December I was told MGUS. In January I was told smoldering multiple myeloma. In March, I was upgraded to high-risk smoldering multiple myeloma.
I have testing every 6 weeks. It is exhausting. I go tomorrow to give my blood, I get the results on the 30th, If I am JUST high-risk smoldering, then I will be granted the month of August to LIVE until I go back in September and repeat the cycle all over.
I have never been so emotionally impacted by something in my life. I feel like I am weighed down with sandbags that I can only take off once, every 2 months, and run like hell the one month. For me, it will be August – that is, if my labs from next week are stable at high-risk smoldering when I see my multiple myeloma specialist on the 30th.
I am a survivor of major trauma and a very strong woman. I am the mother of a child who has been on palliative care and NOTHING has messed me up emotionally more than knowing that multiple myeloma is IN my bone marrow, but not to the levels that anything can be done, but is IN my bone marrow to the point that I have bones break, neuropathy in my feet, leg, hands, I have vision issues from viscosity, and many other symptoms of multiple myeloma, but I know it all comes down to CRAB and I am thankful every day and even type this with baited breath that my blood drawn tomorrow will keep me at high-risk smoldering and show no progression.
I WILL figure out my new normal of running / living every other month, but it is so different than how I anticipated my 40s to be. I was planned on doing a cartwheel on my 50th birthday. Now, I pray I will still be "just" high-risk smoldering when the magical day comes.
I am so new, I doubt I can offer much, but I am here for you!
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KBinNC - Name: KBinNC
- When were you/they diagnosed?: 2015
- Age at diagnosis: 48
Re: Just diagnosed as smoldering & feeling overwhelmed
Hello KBinNC,
I am so sorry that you are having a really tough time with it. You certainly have a lot on your plate. I really hope your bloods come back with the results you need.
I was given a leaflet at the clinic on the need to monitor smoldering multiple myeloma and it says 'Watch and Wait'. I have to say it will be more "Watch and Worry". I think it only normal to worry whilst waiting for results, whatever tests are being done. All we can do is hope and pray that we are granted more smoldering time. I know it is easier said than done as I am due at the end of July for my next bloods to be done. You would think that's awhile off yet, but I am thinking about it all the time, though this might be because it's still all new to me.
Thank you for replying to my post and sharing your journey. I wish you well and good luck with your bloods tomorrow
Love and blessings,
Elaine
I am so sorry that you are having a really tough time with it. You certainly have a lot on your plate. I really hope your bloods come back with the results you need.
I was given a leaflet at the clinic on the need to monitor smoldering multiple myeloma and it says 'Watch and Wait'. I have to say it will be more "Watch and Worry". I think it only normal to worry whilst waiting for results, whatever tests are being done. All we can do is hope and pray that we are granted more smoldering time. I know it is easier said than done as I am due at the end of July for my next bloods to be done. You would think that's awhile off yet, but I am thinking about it all the time, though this might be because it's still all new to me.
Thank you for replying to my post and sharing your journey. I wish you well and good luck with your bloods tomorrow
Love and blessings,
Elaine
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Elaine2033 - Name: Elaine
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoulder myeloma may 2016 myeloma may 17
- Age at diagnosis: 57
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