Time for an update.
I want to clarify what I wrote earlier in this thread. The myeloma specialist DID think that Kyprolis would work and I apologize for making the error. Ultimately however, it was not a good option for me, and I moved on to Velcade, thalidomide, and dexamethasone (VTD).
I tolerated VTD well and was excited when my lambda light chain level went down from 1500 to 590 on the first test. Subsequent test however have shown an increase to 903 and 800, so I have moved on. A recent PET/CT showed extensive tumors and myeloma activity, mostly throughout the spinal region, and some on my arms and legs, which substantiated changing to a more aggressive treatment regimen.
Yesterday I had my second Darzalex infusion and I have had virtually no reactions / side effects to it. Today I start the process of getting Pomalyst so that it can be added. So my treatment plan will be Darzalex 840 mg, Pomalyst 2 mg to begin (I think) and increased as tolerated, and dexamethasone 40 mg with Darzalex and 4 mg two days in a row after the Darzalex.
In spite of my PET/CT and my lousy blood numbers, I am feeling pretty good! I discontinued the thalidomide the Friday before Thanksgiving and had my first Darzalex infusion inpatient last Monday, which is the way it is done by my insurance to allow for delay should there be a reaction. I have felt better this past week than I've felt in a long time!
Although I know I have these extramedullary tumors, I can't feel them and they don't trouble me. My shoulder is a little sore from the myeloma activity, but it's managed with the dex.
Forums
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
I am thrilled today to report that after only 2 Darzalex infusions, my lambda light chains have gone from 886 to 7! Kappa is also 7, which gives me a normal kappa/lambda ratio of 1 – ONE! I haven't seen that in a very, very long time! Hallelujah!
I started 2 mg Pomalyst last night and we'll see if that's tolerable. My recent CBC on Monday was also almost all normal, which I also haven't seen in a long time. RBC was slightly low at 3.57, but most other numbers were about as normal as I've seen in a very long time. It's a good place to be to see what impact Pomalyst will have on them.
The light chain ratio is "Hot off the press," so I haven't spoken to my oncologist yet, but it is indeed good news. I have tolerated the Darzalex completely with no side effects. Not sure what effect if any the Darzalex alone would have on the tumors.
I started 2 mg Pomalyst last night and we'll see if that's tolerable. My recent CBC on Monday was also almost all normal, which I also haven't seen in a long time. RBC was slightly low at 3.57, but most other numbers were about as normal as I've seen in a very long time. It's a good place to be to see what impact Pomalyst will have on them.
The light chain ratio is "Hot off the press," so I haven't spoken to my oncologist yet, but it is indeed good news. I have tolerated the Darzalex completely with no side effects. Not sure what effect if any the Darzalex alone would have on the tumors.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
Hi Carol,
That news rocks! Congrats on your great response.
That news rocks! Congrats on your great response.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Free light chain escape: am I experiencing it?
Very happy for you Carol.
Such a dramatic response to Darzalex is great news for all of us, too – particularly for those of us with the light chain myeloma, to know that the Darzalex can work so well.
Wish you many years of such wonderful response to this treatment, with minimal side effects.
Such a dramatic response to Darzalex is great news for all of us, too – particularly for those of us with the light chain myeloma, to know that the Darzalex can work so well.
Wish you many years of such wonderful response to this treatment, with minimal side effects.
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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: Free light chain escape: am I experiencing it?
Time for another update since things have been moving along well! Yesterday I began my third cycle of Darzalex and I have been through 2 1/2 cycles of Pomalyst. I have begun the workup for a second stem cell transplant at City of Hope.
The work-up included a PET-CT scan that I had done yesterday and today met with my doctor and the scan is completely negative showing all the tumors are gone! As you may read in earlier posts, I had many large tumors throughout my spine, presumably extramedullary, but never biopsied because of their extensiveness and locations.
My kappa and lambda are both 2 mg/l now, which is low for both, but still a ratio of 1. CBC and differential are all pretty darn good considering.
Interestingly now, my serum immunofixation electrophoresis shows an IgG kappa monoclonal gammopathy and an M-spike of 0.11 g/dl (1 g/dL). I have been IgA lambda all along with a light chain escape at relapse. My oncologist (not a myeloma specialist) didn't know what to make of it. Some of you probably have insight on it? I mentioned oligoclonal banding, but I don't really know what I'm talking about and he didn't really answer. When I asked the oncologist who did my bone marrow biopsy about the changes, he just said it meant I was responding well.
My immunoglobulins are all quite low and have been for a long time. For the last several months I have been avoiding crowds and have been staying healthy and feeling good.
Next week I meet with the transplant doctor for final clearance. I'm currently scheduled to check in on January 30th, Hickman catheter on January 31st, melphalan on February 1st, and stem cell infusion on February 2nd. Outpatient but on the campus of the treatment center.
It's a huge decision to do the second transplant, but after being through so many ineffective treatments, I am really hesitant to stay on Darzalex until it is no longer effective and then try to find another effective treatment to get back in to another remission so I could then do a transplant. I've decided to go with the decision so that Darzalex will continue to be an option for me after the transplant, with hopefully a more extended remission. Darzalex will likely be a maintenance component.
I welcome comments on the new IgG component.
The work-up included a PET-CT scan that I had done yesterday and today met with my doctor and the scan is completely negative showing all the tumors are gone! As you may read in earlier posts, I had many large tumors throughout my spine, presumably extramedullary, but never biopsied because of their extensiveness and locations.
My kappa and lambda are both 2 mg/l now, which is low for both, but still a ratio of 1. CBC and differential are all pretty darn good considering.
Interestingly now, my serum immunofixation electrophoresis shows an IgG kappa monoclonal gammopathy and an M-spike of 0.11 g/dl (1 g/dL). I have been IgA lambda all along with a light chain escape at relapse. My oncologist (not a myeloma specialist) didn't know what to make of it. Some of you probably have insight on it? I mentioned oligoclonal banding, but I don't really know what I'm talking about and he didn't really answer. When I asked the oncologist who did my bone marrow biopsy about the changes, he just said it meant I was responding well.
My immunoglobulins are all quite low and have been for a long time. For the last several months I have been avoiding crowds and have been staying healthy and feeling good.
Next week I meet with the transplant doctor for final clearance. I'm currently scheduled to check in on January 30th, Hickman catheter on January 31st, melphalan on February 1st, and stem cell infusion on February 2nd. Outpatient but on the campus of the treatment center.
It's a huge decision to do the second transplant, but after being through so many ineffective treatments, I am really hesitant to stay on Darzalex until it is no longer effective and then try to find another effective treatment to get back in to another remission so I could then do a transplant. I've decided to go with the decision so that Darzalex will continue to be an option for me after the transplant, with hopefully a more extended remission. Darzalex will likely be a maintenance component.
I welcome comments on the new IgG component.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
I feel compelled to give another update because I am doing so well!
My second autologous stem cell transplant (ASCT) was originally scheduled for January 30th of this year. It was delayed three times because I developed a nasty cough I couldn't shake. Eventually I was admitted February 20th to City of Hope outpatient clinic. As one who has experienced both inpatient and outpatient transplants, I would definitely NOT opt for the outpatient setting. My insurance covered the accommodations that are fairly nice at the village there. It's about a quarter mile walk on the campus to the outpatient clinic – a good way to get exercise in every day. I did fine at the clinic until about Day 5, at which time I developed uncontrolled vomiting and diarrhea. At that point I was transferred to inpatient. The huge downside to that is that I was transferred to the general ward in the hospital, NOT to the transplant wing. The care in the general ward is nothing like the care given in the transplant ward. Beware!
The good news is, I survived in spite of it:-) The BEST news is, there is currently no detectable myeloma. My PET/CT scan before the transplant was clear of all tumors. Hallelujah! I recently had more back pain and have since had an additional PET/CT which is also clear, Hallelujah on top of hallelujah! My blood numbers are mostly low, but all good!
This weekend my husband and I celebrate our 40th wedding anniversary with a big dinner cruise party! I'm feeling very blessed to be alive to celebrate this momentous occasion! AND to be feeling so good! I'm currently taking 1 mg Pomalyst as maintenance.
Every day is a blessing!
My second autologous stem cell transplant (ASCT) was originally scheduled for January 30th of this year. It was delayed three times because I developed a nasty cough I couldn't shake. Eventually I was admitted February 20th to City of Hope outpatient clinic. As one who has experienced both inpatient and outpatient transplants, I would definitely NOT opt for the outpatient setting. My insurance covered the accommodations that are fairly nice at the village there. It's about a quarter mile walk on the campus to the outpatient clinic – a good way to get exercise in every day. I did fine at the clinic until about Day 5, at which time I developed uncontrolled vomiting and diarrhea. At that point I was transferred to inpatient. The huge downside to that is that I was transferred to the general ward in the hospital, NOT to the transplant wing. The care in the general ward is nothing like the care given in the transplant ward. Beware!
The good news is, I survived in spite of it:-) The BEST news is, there is currently no detectable myeloma. My PET/CT scan before the transplant was clear of all tumors. Hallelujah! I recently had more back pain and have since had an additional PET/CT which is also clear, Hallelujah on top of hallelujah! My blood numbers are mostly low, but all good!
This weekend my husband and I celebrate our 40th wedding anniversary with a big dinner cruise party! I'm feeling very blessed to be alive to celebrate this momentous occasion! AND to be feeling so good! I'm currently taking 1 mg Pomalyst as maintenance.
Every day is a blessing!
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
Thank you so much for this latest update.
Such first hand account is so inspiring for a lot of other myeloma patients and gives us hope and confidence in the novel drugs that are now available to us.
You have gone through quite an ordeal since the relapse was detected and what a relief it must be to know that your PET/CT scan was clear even before the transplant.
It is also noteworthy that you are feeling very well, and I hope you will have a blast at the wedding anniversary. I sincerely wish you decades of happiness.
Such first hand account is so inspiring for a lot of other myeloma patients and gives us hope and confidence in the novel drugs that are now available to us.
You have gone through quite an ordeal since the relapse was detected and what a relief it must be to know that your PET/CT scan was clear even before the transplant.
It is also noteworthy that you are feeling very well, and I hope you will have a blast at the wedding anniversary. I sincerely wish you decades of happiness.
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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: Free light chain escape: am I experiencing it?
Thank you, K_Shash! I agree that first hand accounts are very helpful and hopeful for others. Last September when I had so many tumors, extramedullary or otherwise, I wasn't sure I'd live to see who would win the November election.
Here I am, 8 months later and doing really well! As we know, this disease wreaks havoc on our emotions, and it helps so much to have connections with people who understand myeloma first hand and commiserate!
Thanks again! Here's to a 50th wedding anniversary celebration in 10 years!
Here I am, 8 months later and doing really well! As we know, this disease wreaks havoc on our emotions, and it helps so much to have connections with people who understand myeloma first hand and commiserate!
Thanks again! Here's to a 50th wedding anniversary celebration in 10 years!
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
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