Hi Terri,
I hope this letter finds you well. I wrote you quite a while back, last when I was on my 7th cycle and considering the Poly MVA in order to avoid the stem cell transplant. Well, I decided against it, mainly because I could not afford it. Would it not be nice if insurance granted us the choice of using alternative methods :>)
Anyhow, after two more cycles, I underwent not only one, but two transplants, four months apart. Remember, I started at 16000 Bence Jones and amazingly never experienced kidney issues, although unfortunately I do have a lot of lesions and osteopena.
Today my Bence Jones is at 167, I am so grateful for the change!! My free kappa started at 5000 and is now around 300 :>) Again, incredibly grateful.
At time of my first transplant, my bone marrow was at 70 percent, after it was 30 percent. I have not been checked since the second transplant, but assume it has again gone down.
I will start maintenance therapy soon and feel better than I have in years. Through both transplants, my kidney function and liver function stayed impressively stable, and, after the transplant, my regular numbers (platelets, WBC, RBC etc) bounced back very fast.
Despite everything, I consider myself incredibly lucky, and I see my future as bright, hopeful. Like everybody says, life is all about the Now and most of us manage to make the most of it, despite our disabilities. I am very impressed with us multiple myeloma folks and feel we are a special breed with how we manage to cope with this nasty disease.
Take care and carpe Diem !!!!
Cherie
Forums
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lievie007 - Name: Cherie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 44
Re: Kappa Light Chain/Bence Jones Type of Myeloma...Confused
Hi TerryL,
I hope you are doing well. I recently joined the Myeloma Beacon and this is only my 5th day of the Chemo. I wrote the following in a post elsewhere in the forum:
I was diagnosed and informed of the high kappa free light chains in my blood test on the day before Thanksgiving. I had known that there was a lot of protein in my urine, but nearly all the blood tests had been normal. The kidney function was otherwise normal, too.
I had my X-rays (showing multiple lesions) and the bone marrow biopsy showing 30% plasma cells. The most baffling problem has been that repeated blood tests show everything normal, except, of course the kappa free light chains that are now as high as 978. and urine tests fail to show any M-spike. The only thing shown is a spike in the IgG monoclonal band, about 2,200 mg of IgG in the 24 hour Urine tests. The protein number was the same in two separate 24-hour urine tests, where the total volume varied from 1,313 mL to 2,285 mL! I asked my oncologist and he could not give me any specific M-spike number. Also, I do not know if I am Stage 1 or Stage 2.
I started my chemo on 12/17/2014. Maybe because I weigh only 125 lbs (57 kg), I have been started on only 20 mg dex and 15 mg Revlimid. I have no idea what Velcade dose I was given yesterday. Last night was rather rough but, as another poster had suggested in my Introduction discussion thread, the Benadryl helped me get at lease 3 hours of sound sleep. I am now wondering how the cumulative effect is going to affect me. I have had no other symptoms whatever and I am continuing with my physical activities and feel vigorous and have a good appetite.
I have been reading a lot about the ASCT and though a few family friend are urging me to consider it, I really want to avoid it. I saw that Nancy from Philadelphia had a relapse three years after her transplant. My pulmonologist friend in Southern California has a patient that is on his 15+ year and on maintenance therapy, without ever having a transplant. So far, I am planning on getting through the next 5 years with just the RVD therapy and of course only if we see some major improvements in about three months. I hope the dozen or so 'promising drugs' that are currently in various phases of patient trials find a better cure for us all in the next few years!
I sincerely hope you are doing well on the maintenance therapy.
K_Shash
I hope you are doing well. I recently joined the Myeloma Beacon and this is only my 5th day of the Chemo. I wrote the following in a post elsewhere in the forum:
I was diagnosed and informed of the high kappa free light chains in my blood test on the day before Thanksgiving. I had known that there was a lot of protein in my urine, but nearly all the blood tests had been normal. The kidney function was otherwise normal, too.
I had my X-rays (showing multiple lesions) and the bone marrow biopsy showing 30% plasma cells. The most baffling problem has been that repeated blood tests show everything normal, except, of course the kappa free light chains that are now as high as 978. and urine tests fail to show any M-spike. The only thing shown is a spike in the IgG monoclonal band, about 2,200 mg of IgG in the 24 hour Urine tests. The protein number was the same in two separate 24-hour urine tests, where the total volume varied from 1,313 mL to 2,285 mL! I asked my oncologist and he could not give me any specific M-spike number. Also, I do not know if I am Stage 1 or Stage 2.
I started my chemo on 12/17/2014. Maybe because I weigh only 125 lbs (57 kg), I have been started on only 20 mg dex and 15 mg Revlimid. I have no idea what Velcade dose I was given yesterday. Last night was rather rough but, as another poster had suggested in my Introduction discussion thread, the Benadryl helped me get at lease 3 hours of sound sleep. I am now wondering how the cumulative effect is going to affect me. I have had no other symptoms whatever and I am continuing with my physical activities and feel vigorous and have a good appetite.
I have been reading a lot about the ASCT and though a few family friend are urging me to consider it, I really want to avoid it. I saw that Nancy from Philadelphia had a relapse three years after her transplant. My pulmonologist friend in Southern California has a patient that is on his 15+ year and on maintenance therapy, without ever having a transplant. So far, I am planning on getting through the next 5 years with just the RVD therapy and of course only if we see some major improvements in about three months. I hope the dozen or so 'promising drugs' that are currently in various phases of patient trials find a better cure for us all in the next few years!
I sincerely hope you are doing well on the maintenance therapy.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Kappa light chain / Bence Jones myeloma - confused
I was diagnosed with Bence Jones light chain IgG in February 2015. I'm just turning 64 and female. Went to three cancer centers before finding the one for me at University of Michigan.
I've been on Revlimid, Velcade, and dexamethasone (RVD) chemo for 5 months, standard protocol, with one more to go, with fatigue the worst side effect. I am meeting with the transplant team in two weeks. I have bubbly urine, but my kidneys are top notch, all tests show blood work is A++. I've had no pain.
The new standard protocol as of the last ASH conference says you are able to start treatment! I had no CRAB either, and my M protein is down from 500 to 0.50! Find another doctor who knows this and good luck to you!!
I've been on Revlimid, Velcade, and dexamethasone (RVD) chemo for 5 months, standard protocol, with one more to go, with fatigue the worst side effect. I am meeting with the transplant team in two weeks. I have bubbly urine, but my kidneys are top notch, all tests show blood work is A++. I've had no pain.
The new standard protocol as of the last ASH conference says you are able to start treatment! I had no CRAB either, and my M protein is down from 500 to 0.50! Find another doctor who knows this and good luck to you!!
-
Digifotogal
Re: Kappa light chain / Bence Jones myeloma - confused
Forgot a few things! I was diagnosed smoldering then Stage 1 after it was found I had no lesions from the PET scan, And I had low light chain IgG.
I've found that, after the first night of dex, I can sleep much better. My face grew rounder and my stomach, but I've been reassured that will go down. Drink a LOT! Ice water really helps (use fruit to flavor it). Eat tons of veggies, a little fruit, and a lot of fiber - raw nuts, unprocessed meats, eat clean! If you do nothing else, walk stairs and walk big box stores completely. Take vitamins and supplements your doctor approves, and if taking Velcade injections, don't eat broccoli for a few days.
You have high light chain, a different type than I have, and should have treatment appropriate to your high specific type and have a stage! Don't be shy about asking questions and study up on
your disease. We all live with cancer and must have a caregiver go with you to appointments who has studied up also and can ask questions for and about your cancer.
Be proactive about your disease. The doctors sometimes forget to give you details that could really help you understand the goal of treatment!
I've found that, after the first night of dex, I can sleep much better. My face grew rounder and my stomach, but I've been reassured that will go down. Drink a LOT! Ice water really helps (use fruit to flavor it). Eat tons of veggies, a little fruit, and a lot of fiber - raw nuts, unprocessed meats, eat clean! If you do nothing else, walk stairs and walk big box stores completely. Take vitamins and supplements your doctor approves, and if taking Velcade injections, don't eat broccoli for a few days.
You have high light chain, a different type than I have, and should have treatment appropriate to your high specific type and have a stage! Don't be shy about asking questions and study up on
your disease. We all live with cancer and must have a caregiver go with you to appointments who has studied up also and can ask questions for and about your cancer.
Be proactive about your disease. The doctors sometimes forget to give you details that could really help you understand the goal of treatment!
-
Digifotogal
24 posts
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