I have multiple myeloma (IgA lambda) with severe anemia. I am on bortezomib (Velcade), dexamethasone, and a bone strengthener. I have had difficulties going through the first round of the treatment. I need constant blood transfusions. Sometimes, my body refuses the transfusions. When I do accept the transfusions, they only seem to help for a few days.
The doctors say they think my blood is breaking down or maybe there is some internal bleeding that they cannot find. I have bled from the bum a few times. Initially, I was taking turmeric / curcumin, but the doctors said to cease, which I did, and the bleeding seemed to stop. Hemorrhoids were checked and are not the cause.
I'm not coping with the hospital stays and have gone from 62 kg (137 lb) down to 55 kg (121 lb) despite trying to eat heaps of healthy food. I have basically cut out red meat and sugar, but it is very difficult in the hospital. I have low platelets, low hemoglobin, and constant temperatures. I have just now been prescribed prednisone, as well, to see if it helps with my blood, but it is not looking good.
I guess my question is: If I cannot take the blood transfusions, or the blood keeps breaking down, will I die? Is there any way the oncology team can make the blood work, as prednisone does not seem to be helping either?
The doctors say maybe my bones are no longer producing red blood cells. I am really so concerned and anxiety has now set in, big time. I was only diagnosed 6 months ago and treatment only started less than 2 months ago.
Please help me with any advise you can give. Many thanks.
Forums
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Blood transfusions not working - what's next?
Hello Ailsa,
I was just wondering why you don't eat red meat? I know when I am anemic (granted, not anywhere as bad as you seem to be), I consciously eat more red meat, spinach, and broccoli to try and get my iron levels up. It helps within a few days. Perhaps it is a different anemia you have?
Also, I take iron supplements if it gets too bad. Oh & MILO is a good source of iron and other vitamins, too. Plus it tastes good.
Sorry I do not have any insight into your condition.
Yours Vicki.
I was just wondering why you don't eat red meat? I know when I am anemic (granted, not anywhere as bad as you seem to be), I consciously eat more red meat, spinach, and broccoli to try and get my iron levels up. It helps within a few days. Perhaps it is a different anemia you have?
Also, I take iron supplements if it gets too bad. Oh & MILO is a good source of iron and other vitamins, too. Plus it tastes good.
Sorry I do not have any insight into your condition.
Yours Vicki.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Blood transfusions not working - what's next?
Have you had your iron and B12 levels checked?
I have had the same problem and have found I did better eating grass-fed beef 2-3 times a day and lots of animal fats.
I have had the same problem and have found I did better eating grass-fed beef 2-3 times a day and lots of animal fats.
Re: Blood transfusions not working - what's next?
There can be a number of reasons that your blood transfusions are not working for long periods of time. Hopefully your oncology team is working this out with you. Potential explanations for what you're experiencing include:
- Uncontrolled multiple myeloma - Control of multiple myeloma is required; anti-myeloma therapy is intended to address this potential source of the problem.
- Renal (kidney) dysfunction, either from chronic issues or myeloma - Can be partially treated with erythropoietin-stimulating agents (ESAs).
- Chronic gastrointestinal bleeds, or iron deficiency (whether from chronic GI bleeds or dietary deficiency) - Iron infusions may be necessary.
- Vitamin B12 deficiency, folate deficiency.
- More rarely associated with myeloma are autoimmune conditions, such as autoimmune hemolytic anemia (AIHA), or additional marrow disorders, such as myelodysplastic syndromes (MDS).
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Blood transfusions not working - what's next?
Is your M spike very high? The reason I ask is I had a rare myeloma-associated issue called hyperviscocity syndrome. It means your blood has too much protein and is very thick, and there is no room for other blood cells.
Hyperviscocity caused a bleeding disorder for me (nose and GI tract). It can be treated with apherisis treatment to remove the protein until your myeloma gets better controlled.
In my case, I had low red counts, but was also very iron deficient from the bleeding, and had to do intravenous iron infusions.
Hyperviscocity caused a bleeding disorder for me (nose and GI tract). It can be treated with apherisis treatment to remove the protein until your myeloma gets better controlled.
In my case, I had low red counts, but was also very iron deficient from the bleeding, and had to do intravenous iron infusions.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Blood transfusions not working - what's next?
I had 1 1/2 litres of irradiated packed red cells 6 weeks ago, as the multiple myeloma made me aneamic - but my body is now starting to make its own red cells as I am on treatment.
What's next if the therapy doesn't appear to be working? Then more transfusions. I am afraid to say that myeloma is treatable, not curable.
I suffered dreadful anxiety (agoraphobia) and depression (irony - wanted to commit suicide because I found out I was terminal) for over a year, until I got my head around it and got better meds.
I learnt to accept my diagnosis. Myeloma has taught me what is important, what is not, and not to sweat the small stuff.
Luv, Sal.
What's next if the therapy doesn't appear to be working? Then more transfusions. I am afraid to say that myeloma is treatable, not curable.
I suffered dreadful anxiety (agoraphobia) and depression (irony - wanted to commit suicide because I found out I was terminal) for over a year, until I got my head around it and got better meds.
I learnt to accept my diagnosis. Myeloma has taught me what is important, what is not, and not to sweat the small stuff.
Luv, Sal.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: Blood transfusions not working - what's next?
Thanks for the info. The paraproteins in my bloods are quite low, however the plasma cells in my bones are high. I feel the whole situation is not under control. Too many hospital stays and I've only just completed the first round of bortezomib [Velcade], steroids and bone strengthener.
My greatest fear is if my hemoglobin keeps breaking down, how can I survive? Two bags of blood less than a week ago, and another two bags today. I seem to be living day by day and have lost my independence. I'm losing faith fast with a very cold, unempathetic oncologist. Australian public health system.
Please, what can I do? I feel so lost and scared.
My greatest fear is if my hemoglobin keeps breaking down, how can I survive? Two bags of blood less than a week ago, and another two bags today. I seem to be living day by day and have lost my independence. I'm losing faith fast with a very cold, unempathetic oncologist. Australian public health system.
Please, what can I do? I feel so lost and scared.
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Blood transfusions not working - what's next?
It can take awhile till the chemo gets the cancer under control and hopefully you are responding. Eat a big juicy rare hamburger on whole grain bread at least twice a day.
Re: Blood transfusions not working - what's next?
It does sound like the myeloma isn't under control? But i'm sure your next treatment will control it. My husband had myeloma and his bloods were low when treatment stopped working. He would have 3 bags of blood every week and a bag of platelets, but that was when his myeloma got out of control.
Keep positive, there are a lot of treatments to try yet.
Keep positive, there are a lot of treatments to try yet.
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wanda and dan - Name: wanda and dan
- Who do you know with myeloma?: partner dan
- When were you/they diagnosed?: 41
- Age at diagnosis: 41
Re: Blood transfusions not working - what's next?
Dear Ailsa,
I was just wondering how you are getting on? If you are still getting tranfusions? If they are working?
Yours Vicki
I was just wondering how you are getting on? If you are still getting tranfusions? If they are working?
Yours Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
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