Hi!
My name is Elena and I have been diagnosed with multiple myeloma a month and a half ago. It's been all a blur since then. I am very confused and don't know what to do. It's affecting my spine very bad and I can barely walk, which is like even worse than I could ever imagine.
I'm 35 and I already had one session of chemo. I could really use some support right now. Thank you!
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9 posts
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
Re: I have myeloma
Hi Elena,
I am so sorry you have been suffering. When I was first diagnosed, it took a couple of chemo treatments before my facial tumor shrunk and my pain started to recede.
You can get through this! When it gets bad for me, I try to remember what my mom tells me: take it one day at a time. I'm not always successful. I've tried meditation and activities to distract myself from the pain, in conjunction with working with my team of doctors on how best to combat the pain. Yes, I said combat, because I believe this is a fight, for quality of life if nothing else.
Reaching out on this forum has helped me a great deal as well.
I wish you peace and happiness as you start this challenging journey.
I am so sorry you have been suffering. When I was first diagnosed, it took a couple of chemo treatments before my facial tumor shrunk and my pain started to recede.
You can get through this! When it gets bad for me, I try to remember what my mom tells me: take it one day at a time. I'm not always successful. I've tried meditation and activities to distract myself from the pain, in conjunction with working with my team of doctors on how best to combat the pain. Yes, I said combat, because I believe this is a fight, for quality of life if nothing else.
Reaching out on this forum has helped me a great deal as well.
I wish you peace and happiness as you start this challenging journey.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: I have myeloma
Hi Elena,
I feel so sorry for you and I think you made a good choice joining this forum. Some people here really helped me with a few words only.
I was diagnosed with IgG kappa multiple myeloma, International Staging System (ISS) Stage 2, in November, 2012, and just like you I couldn't barely walk. I had 5 compressed vertebrae and 2 broken ribs (I heard my ribs braking while I was sitting!). I cannot remember exactly how much time it took to get rid of the pain completely, I think it was about 5 weeks, but after one or two sessions of chemo, I was feeling better already and the pain wasn't unbearable anymore.
Best of luck
I feel so sorry for you and I think you made a good choice joining this forum. Some people here really helped me with a few words only.
I was diagnosed with IgG kappa multiple myeloma, International Staging System (ISS) Stage 2, in November, 2012, and just like you I couldn't barely walk. I had 5 compressed vertebrae and 2 broken ribs (I heard my ribs braking while I was sitting!). I cannot remember exactly how much time it took to get rid of the pain completely, I think it was about 5 weeks, but after one or two sessions of chemo, I was feeling better already and the pain wasn't unbearable anymore.
Best of luck
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jane84 - Name: jane84
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11,2012
- Age at diagnosis: 44
Re: I have myeloma
Thanks for answering me!
I was told that I will start the treatment with Velcade, but to be honest I am scared after reading about all the side effects, especially scared that I will not be able to walk. I am fighting this alone, my whole family is gone, and not being able to take care of myself really scares me.
I was told that I will start the treatment with Velcade, but to be honest I am scared after reading about all the side effects, especially scared that I will not be able to walk. I am fighting this alone, my whole family is gone, and not being able to take care of myself really scares me.
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
Re: I have myeloma
Hi Elena,
I see from your member profile that you are in Romania. I have Romanian-speaking family members, although I do not speak Romanian.
Velcade is used fairly often for myeloma patients in Canada. There are various techniques used to lessen the chances of the increased leg pain side effects of Velcade.
Are you using melphalan right now? I think it is used in Europe fairly often for myeloma treatment.
I see from your member profile that you are in Romania. I have Romanian-speaking family members, although I do not speak Romanian.
Velcade is used fairly often for myeloma patients in Canada. There are various techniques used to lessen the chances of the increased leg pain side effects of Velcade.
Are you using melphalan right now? I think it is used in Europe fairly often for myeloma treatment.
Last edited by Little Monkey on Wed Oct 07, 2015 7:42 am, edited 1 time in total.
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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: I have myeloma
The trick is to tell your oncologist about anything that feels out of the ordinary right away! Velcade is one of the proven drugs to fight myeloma, but there are others. If you start to feel unusual sensations in your feet or hands, if you get a rash, if anything else weird happens, tell your oncologist right away. They might be able to switch you to a different drug. Sometimes they are not allowed to do that until you start getting side effects from the Velcade.
The important thing is to stay on SOME sort of therapy to fight the myeloma or your bones could get worse.
After discovering myeloma after my arm broke for no reason, I went through 5 cycles of Velcade, Revlimid and dex. That put me into remission, and I have been there for over a year.
The important thing is to stay on SOME sort of therapy to fight the myeloma or your bones could get worse.
After discovering myeloma after my arm broke for no reason, I went through 5 cycles of Velcade, Revlimid and dex. That put me into remission, and I have been there for over a year.
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Sailor Mike - Name: Mike Verla
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 62
Re: I have myeloma
Elena,
So sorry that you also have been diagnosed with multiple myeloma. As someone else said, it is a truly challenging disease.
I was diagnosed in April 2014. When I was first seen by my oncologist, I could hardly walk, and soon progressed to the point that I could do nothing for myself because of the pain. I had a destructive lesion in the sacrum, but no true fracture.
After six months of Velcade, dexamethasone, and Revlimid – with infusions of Zometa also – I got dramatically better to the point that I am now able to do pretty much anything I want to do, by being careful. I am on Revlimid 10 mg. maintenance daily and Zometa every two months. I have not had any pain to speak of in many months. So far so good.
I know it is not the same for everyone, and this is why forums are so helpful. You get input from a lot of different perspectives.
Best of luck with your journey. Take it one day at a time, and be encouraged that it can possibly look much better down the road.
Bonnie
So sorry that you also have been diagnosed with multiple myeloma. As someone else said, it is a truly challenging disease.
I was diagnosed in April 2014. When I was first seen by my oncologist, I could hardly walk, and soon progressed to the point that I could do nothing for myself because of the pain. I had a destructive lesion in the sacrum, but no true fracture.
After six months of Velcade, dexamethasone, and Revlimid – with infusions of Zometa also – I got dramatically better to the point that I am now able to do pretty much anything I want to do, by being careful. I am on Revlimid 10 mg. maintenance daily and Zometa every two months. I have not had any pain to speak of in many months. So far so good.
I know it is not the same for everyone, and this is why forums are so helpful. You get input from a lot of different perspectives.
Best of luck with your journey. Take it one day at a time, and be encouraged that it can possibly look much better down the road.
Bonnie
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Normans girl
Re: I have myeloma
Elena,
I am sorry you have to deal with multiple myeloma. In the beginning, I think it is pretty much an anxiety-producing blur for the majority of us.
Along with the Velcade, are they giving you any bisphosphates (Zometa is one) to help prevent further deterioration of your spine?
I hope things start getting better!
Tom
I am sorry you have to deal with multiple myeloma. In the beginning, I think it is pretty much an anxiety-producing blur for the majority of us.
Along with the Velcade, are they giving you any bisphosphates (Zometa is one) to help prevent further deterioration of your spine?
I hope things start getting better!
Tom
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
Re: I have myeloma
Yes, they gave me Zometa for the first time 2 days ago. Still not started with Velcade, waiting for approval. I can walk a little bit better than before, which helps me a lot.
Thanks everybody for the support, and I hope it will go well at least for now. Taking one day at the time.
Thanks everybody for the support, and I hope it will go well at least for now. Taking one day at the time.
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
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