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Re: New member
I had a very encouraging doctor appointment yesterday. My kappa light chains have come down from 64 to 12.9. I can put up with any side effects as long as I'm making progress.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: New member
Dear Cathy:
I am sending you best regards from Berlin, Germany. It is very hard to be diagnosed with myeloma out of a normal healthy active live. I have been through nearly the same thoughts you are describing when I was diagnosed with myeloma Stage III in February. I have no kidney damage but a very severe anemia. My hemoglobin was down to 4.6! I had never heard of myeloma before and my doctor had to write down the diagnosis on a piece of paper.
With the help of my husband, my family and good friends, and last but not least with the help of my religious belief, I went through the darkest moments of my live.
But now after a month of treatment (Velcade, melphalan, prednisone), I am feeling much better. I took early retirement from my profession as a TV producer. And I am very happy about that.
Last week I had surgery. I don´t know the English word for that now, but we were afraid it is a second cancer! How should I survive a second cancer! Our relief was borderless when we were told it is not! Can one be happy to know that you have "only" one cancer! Yes!
All the best to you, Cathy.
Elfriede
I am sending you best regards from Berlin, Germany. It is very hard to be diagnosed with myeloma out of a normal healthy active live. I have been through nearly the same thoughts you are describing when I was diagnosed with myeloma Stage III in February. I have no kidney damage but a very severe anemia. My hemoglobin was down to 4.6! I had never heard of myeloma before and my doctor had to write down the diagnosis on a piece of paper.
With the help of my husband, my family and good friends, and last but not least with the help of my religious belief, I went through the darkest moments of my live.
But now after a month of treatment (Velcade, melphalan, prednisone), I am feeling much better. I took early retirement from my profession as a TV producer. And I am very happy about that.
Last week I had surgery. I don´t know the English word for that now, but we were afraid it is a second cancer! How should I survive a second cancer! Our relief was borderless when we were told it is not! Can one be happy to know that you have "only" one cancer! Yes!
All the best to you, Cathy.
Elfriede
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Elfriede - Name: Elfriede
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2012
- Age at diagnosis: 57
Re: New member
Hi Elfride. So glad to hear from you in Germany. I have a daughter who did a foreign exchange in Germany and her friend from Germany is coming to see her in a month or so.
I can imagine how hard it would be to think you might have a second cancer. Everyone who has cancer worries about a recurrence and I have found fear of the future one of the hardest parts of this. My imagination can run wild and then it is hard not to be anxious.
I am so glad you are "only" dealing with myeloma.
Our big comfort with our religious beliefs is that the Lord says He will never leave us and never forsake us. Only God can be with us during treatments and even death. Hope that did not sound depressing, but it is a comfort to me
I can imagine how hard it would be to think you might have a second cancer. Everyone who has cancer worries about a recurrence and I have found fear of the future one of the hardest parts of this. My imagination can run wild and then it is hard not to be anxious.
I am so glad you are "only" dealing with myeloma.
Our big comfort with our religious beliefs is that the Lord says He will never leave us and never forsake us. Only God can be with us during treatments and even death. Hope that did not sound depressing, but it is a comfort to me
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: New member
Just in case anyone else has this symptom: my urine was reddish brown and I thought I was peeing a lot of blood. I went to my kidney doctor and he did tests. It looked like blood. But under a microscope it was not blood! Just the medication or something
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: New member
I saw the multiple myeloma specialist from the Blood Cancer Institute in Denver on Monday. He told us that I have light chain deposition disease and that it will take a couple of months to try to get my kidneys healthier before I will be ready to try the stem cell replacement.
I looked up light chain deposition disease and it appears to be a second disease - the light chains build up in organs and are toxic. Wikipedia said 90% of the time it results in renal failure. I cried a bit when I read the Internet reports, but, frankly, getting used to the cancer itself was the biggest hurdle.
A friend told me that we all go through those 5 stages of grief,and it helped me to hear that. I could see that I have gone through the numbness (stage 1), and the purpose of that numbness or denial is so you can adjust to the bad news in smaller steps.
Stage 2 is anger. I was not angry AT anyone really, but I felt cheated of 25 years of my life.
Stage 3 is "bargaining with God." Again, I didn't exactly consciously bargain with God, but I started doing my renal diet perfectly and hoped that would make a difference. I have some great recipes if anyone is interested.
Stage 4 is depression. I really noticed this stage as grieving. Grieving over the beautiful day, that I would not be around to enjoy it, or my grandchildren. Or feeling sad about the grieving my family would do over my death.
Stage 5 is acceptance. Finally I am feeling more like I can deal with this. I can find good in my life still.
I looked up light chain deposition disease and it appears to be a second disease - the light chains build up in organs and are toxic. Wikipedia said 90% of the time it results in renal failure. I cried a bit when I read the Internet reports, but, frankly, getting used to the cancer itself was the biggest hurdle.
A friend told me that we all go through those 5 stages of grief,and it helped me to hear that. I could see that I have gone through the numbness (stage 1), and the purpose of that numbness or denial is so you can adjust to the bad news in smaller steps.
Stage 2 is anger. I was not angry AT anyone really, but I felt cheated of 25 years of my life.
Stage 3 is "bargaining with God." Again, I didn't exactly consciously bargain with God, but I started doing my renal diet perfectly and hoped that would make a difference. I have some great recipes if anyone is interested.
Stage 4 is depression. I really noticed this stage as grieving. Grieving over the beautiful day, that I would not be around to enjoy it, or my grandchildren. Or feeling sad about the grieving my family would do over my death.
Stage 5 is acceptance. Finally I am feeling more like I can deal with this. I can find good in my life still.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: New member
Dear antelope1225,
Light chain deposition disease is an unusual but treatable form of kidney injury for patients with myeloma. You are right -- it is the result of light chain antibodies being produced by the myeloma that are depositing in the glomeruli of your kidneys and causing subsequent damage.
The good news is that the antibody deposits tend to affect the kidneys preferentially while sparing other organs. That being said, the heart and gastrointestinal tract are occasionally (rarely) affected. A baseline assessment of your heart function would be advisable.
Your kidney function does not have to be normal necessarily for a transplant, but the risk does increase as the kidney function declines. What is your creatinine level?
We have treated quite a few patients with light chain deposition disease, including those with co-existing myeloma and those who do not have overt myeloma. In both cases, treatment has been successful in the vast majority of instances with excellent remissions and improvement (or, at a minimum, stabilization) of kidney function. The fact that your light chains are coming down is highly reassuring.
Best of luck!
Pete V.
Light chain deposition disease is an unusual but treatable form of kidney injury for patients with myeloma. You are right -- it is the result of light chain antibodies being produced by the myeloma that are depositing in the glomeruli of your kidneys and causing subsequent damage.
The good news is that the antibody deposits tend to affect the kidneys preferentially while sparing other organs. That being said, the heart and gastrointestinal tract are occasionally (rarely) affected. A baseline assessment of your heart function would be advisable.
Your kidney function does not have to be normal necessarily for a transplant, but the risk does increase as the kidney function declines. What is your creatinine level?
We have treated quite a few patients with light chain deposition disease, including those with co-existing myeloma and those who do not have overt myeloma. In both cases, treatment has been successful in the vast majority of instances with excellent remissions and improvement (or, at a minimum, stabilization) of kidney function. The fact that your light chains are coming down is highly reassuring.
Best of luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: New member
Thank you for your help Dr Voorhees.
I appreciate you confirming that light chain deposition disease with multiple myeloma is unusual but treatable. I especially was encouraged to hear that the damage and deposits are usually only in the kidneys and not to other organs very often. That is a relief because I feared it being in my brain!
I passed an EKG in May before I had my fat tab, bone marrow, and kidney biopsies. But I will keep an eye on my heart numbers.
My creatinine was up to 3.1 about 3 weeks ago, but was back down to around 2.1 within the week. I have a doctors appointment with my oncologist tomorrow and I might find out any new test results.
My nephrologist has scheduled me to watch a video on options if I have renal failure (dialysis and transplant options). My GFR was 33 at the beginning of May, but was down to 23 in the last weeks. It sounds like most of that damage is permanent, but as the light chains are not deposited, I may regain a bit of my kidney function back.
My chemo has changed to Velcade and dex 2x per week, 2 weeks in a row, then one week off and I am hoping I will have stem cell replacement the end of October.
Thank you again for your time and information.
I appreciate you confirming that light chain deposition disease with multiple myeloma is unusual but treatable. I especially was encouraged to hear that the damage and deposits are usually only in the kidneys and not to other organs very often. That is a relief because I feared it being in my brain!
I passed an EKG in May before I had my fat tab, bone marrow, and kidney biopsies. But I will keep an eye on my heart numbers.
My creatinine was up to 3.1 about 3 weeks ago, but was back down to around 2.1 within the week. I have a doctors appointment with my oncologist tomorrow and I might find out any new test results.
My nephrologist has scheduled me to watch a video on options if I have renal failure (dialysis and transplant options). My GFR was 33 at the beginning of May, but was down to 23 in the last weeks. It sounds like most of that damage is permanent, but as the light chains are not deposited, I may regain a bit of my kidney function back.
My chemo has changed to Velcade and dex 2x per week, 2 weeks in a row, then one week off and I am hoping I will have stem cell replacement the end of October.
Thank you again for your time and information.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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