Good Morning.
My husband was diagnosed with multiple myeloma in January 2013. Unfortunately, we didn't know until he had gotten what appeared to be the flu around Christmas in 2012. He continued to get worse and lost his sight in his right eye. He finally agreed to go the ER.
Long story short, he developed a severe infection in his right eye and it was removed. When he didn't appear to be recovering, they began to look for other things. That was when the myeloma was diagnosed.
He had 54 chemotherapy treatments to get him to the point of being a candidate for stem transplant. They were able to use is own stem cells.
He hasn't had any signs of myeloma in blood tests since February 3, 2014, which was prior to transplant ... until the tests performed a week ago. Now there are traces but not enough to quantify.
My question is to those who have been transplanted:
Has anyone else had the myeloma to appear so soon, and if so, what treatment options did you have?
Thanks so much!
Forums
Re: Myeloma traces returning after stem cell transplant
I am very sorry to hear all that your husband has been through, Skidah. I can only imagine how challenging all of this has been for you and for him.
It is unfortunately the case that people can relapse soon after a transplant. However, let's not jump to conclusions yet when it comes to your husband's situation.
You say that his latest tests showed traces of myeloma, but that it's difficult to quantify. Can you be more specific? What tests showed traces? Was it perhaps his FLC tests?
Also, when you get a chance, can you tell us what chemotheraphy he got before his transplant, and whether he was treated with anything after his transplant?
Finally, when exactly did he have his transplant, and were the labs that you mentioned that showed traces of myeloma the first that were done after his transplant?
It is unfortunately the case that people can relapse soon after a transplant. However, let's not jump to conclusions yet when it comes to your husband's situation.
You say that his latest tests showed traces of myeloma, but that it's difficult to quantify. Can you be more specific? What tests showed traces? Was it perhaps his FLC tests?
Also, when you get a chance, can you tell us what chemotheraphy he got before his transplant, and whether he was treated with anything after his transplant?
Finally, when exactly did he have his transplant, and were the labs that you mentioned that showed traces of myeloma the first that were done after his transplant?
Re: Myeloma traces returning after stem cell transplant
I am not sure what a FLC test is but the name of the test that showed traces, is called Immunofixation ELP, Serum. This test showed the traces in the 3rd, 4th and 5th tests.
Prior to transplant on 2/3 and 2/10/14, there were no traces found. He was transplanted on March 5th. Yesterday, was his 3 month anniversary. The doctor performed a bone marrow biopsy that we will get results on June 16th. The first test after transplant was on 3/31, and no traces were found. However, on 4/21, 5/6 and 6/5, traces were found but not significant to quantify.
His first drug regimen was Velcade and dexamethasone. I can't remember the 2nd round, the last round before transplant, he took Cytoxan / Revlimid/ dexamethasone. This last round was what got him to the point that he was a stem cell candidate.
He has not had any maintenance drugs but the doctor did ask us yesterday to think about taking Revlimid as a maintenance drug.
They have enough cells for a second transplant but the melphalan prior to transplant just about killed my husband. We are hoping he doesn't have to have a second transplant.
We are not sure how long he had had the myeloma prior to being diagnosed. He was a very healthy man and hadn't been to the doctor in 12 years because he was never sick. He got what we thought was the flu on December 19th, and began hallucinations on about the 26th of December. By the time I finally got him to go to the hospital, he had lost the vision in his right eye.
In an 8 hour period, an infection completely took over the color part of his eye. It was white with pus. He was transported to West Virginia University Medical Center on January 6th, 2013. On January 8th, they removed his right eye. After about a week and he didn't get any better, they began to look for other things. They performed a bone marrow biopsy that confirmed that he had multiple myeloma. His tumor ratio was 60 - 70% tumors.
He has a lytic lesion in his skull and he has two pathological fractures of T8 and T9. He is having a lot of pain in his hip and isn't able to walk without a cane. I am thinking he probably has a pinched nerve from the fractures but we haven't gotten that far. The doctor has been busy just trying to save his life for the past year and a half. I am sure when it is appropriate, he will what he can with the fractures.
The doctor keeps reminding us that the stem cell transplant is NOT A CURE ... so I am just searching to see if others have had similar situations.
Thanks so much.
Prior to transplant on 2/3 and 2/10/14, there were no traces found. He was transplanted on March 5th. Yesterday, was his 3 month anniversary. The doctor performed a bone marrow biopsy that we will get results on June 16th. The first test after transplant was on 3/31, and no traces were found. However, on 4/21, 5/6 and 6/5, traces were found but not significant to quantify.
His first drug regimen was Velcade and dexamethasone. I can't remember the 2nd round, the last round before transplant, he took Cytoxan / Revlimid/ dexamethasone. This last round was what got him to the point that he was a stem cell candidate.
He has not had any maintenance drugs but the doctor did ask us yesterday to think about taking Revlimid as a maintenance drug.
They have enough cells for a second transplant but the melphalan prior to transplant just about killed my husband. We are hoping he doesn't have to have a second transplant.
We are not sure how long he had had the myeloma prior to being diagnosed. He was a very healthy man and hadn't been to the doctor in 12 years because he was never sick. He got what we thought was the flu on December 19th, and began hallucinations on about the 26th of December. By the time I finally got him to go to the hospital, he had lost the vision in his right eye.
In an 8 hour period, an infection completely took over the color part of his eye. It was white with pus. He was transported to West Virginia University Medical Center on January 6th, 2013. On January 8th, they removed his right eye. After about a week and he didn't get any better, they began to look for other things. They performed a bone marrow biopsy that confirmed that he had multiple myeloma. His tumor ratio was 60 - 70% tumors.
He has a lytic lesion in his skull and he has two pathological fractures of T8 and T9. He is having a lot of pain in his hip and isn't able to walk without a cane. I am thinking he probably has a pinched nerve from the fractures but we haven't gotten that far. The doctor has been busy just trying to save his life for the past year and a half. I am sure when it is appropriate, he will what he can with the fractures.
The doctor keeps reminding us that the stem cell transplant is NOT A CURE ... so I am just searching to see if others have had similar situations.
Thanks so much.
Re: Myeloma traces returning after stem cell transplant
Give the SCT time. There have many people with SCTs that have had numbers bouncing around for up to a year. The bone marrow is in a recovery mode. Be careful about jumping to conclusions to soon. The bone marrow biopsy results should be a guide.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Myeloma traces returning after stem cell transplant
Hi Skidah,
I agree with Ladylib about the tests bouncing around after the SCT so traces showing up don't seem too much of a worry to me. However, bone deterioration showing up after the SCT should be carefully considered in my opinion. Did his hip pain and problems get worse after the SCT? If so, perhaps those need to be imaged and compared with previous studies.
It is a really good thing that he showed no trace of myeloma though. I had my auto transplant last October and the lowest M-spike I ever had after that was a 0.35 and that lasted only briefly. I had skull bumps (plasmacytomas) show up day 60 post transplant but my specialist was not concerned because my numbers were good. He did put me on consolidation treatment (same doses as induction) of Revlimid, Velcade and dex on Day 90 post transplant. I had 2 cycles of that and then went on maintenance RVD for 2 cycles. By February the bump on my forehead was really big and my numbers had climbed somewhat. In April, I did 5 days of radiation for the skull. The one on the side of my head went away and the forehead didn't budge.
On April 15th I started Kyprolis, Pomalyst and dex. My M-spike on April 1st was 1.24 and by May 23rd it was 2.37. I began having a lot of hip pain around May 20th. The MRIs done on my pelvis and femurs showed that I had significant bone damage since February. I was taken off the Kyprolis, Pomalyst and dex and have now had one week of what will be Velcade twice a week, dex on Velcade days, and Cytoxan on the 1st, 3rd and 4th Velcade days but Doxil on the second Velcade day.
I'm not sure if any of this helps you because everyone's situation is so different. But my opinion would be to not just go by the blood numbers but have MRIs or something similar done to make sure there is not continuing damage going on. But, take heart that so far his numbers have been good. That is still a positive thing.
Best wishes and I hope your husband feels better very soon.
I agree with Ladylib about the tests bouncing around after the SCT so traces showing up don't seem too much of a worry to me. However, bone deterioration showing up after the SCT should be carefully considered in my opinion. Did his hip pain and problems get worse after the SCT? If so, perhaps those need to be imaged and compared with previous studies.
It is a really good thing that he showed no trace of myeloma though. I had my auto transplant last October and the lowest M-spike I ever had after that was a 0.35 and that lasted only briefly. I had skull bumps (plasmacytomas) show up day 60 post transplant but my specialist was not concerned because my numbers were good. He did put me on consolidation treatment (same doses as induction) of Revlimid, Velcade and dex on Day 90 post transplant. I had 2 cycles of that and then went on maintenance RVD for 2 cycles. By February the bump on my forehead was really big and my numbers had climbed somewhat. In April, I did 5 days of radiation for the skull. The one on the side of my head went away and the forehead didn't budge.
On April 15th I started Kyprolis, Pomalyst and dex. My M-spike on April 1st was 1.24 and by May 23rd it was 2.37. I began having a lot of hip pain around May 20th. The MRIs done on my pelvis and femurs showed that I had significant bone damage since February. I was taken off the Kyprolis, Pomalyst and dex and have now had one week of what will be Velcade twice a week, dex on Velcade days, and Cytoxan on the 1st, 3rd and 4th Velcade days but Doxil on the second Velcade day.
I'm not sure if any of this helps you because everyone's situation is so different. But my opinion would be to not just go by the blood numbers but have MRIs or something similar done to make sure there is not continuing damage going on. But, take heart that so far his numbers have been good. That is still a positive thing.
Best wishes and I hope your husband feels better very soon.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Myeloma traces returning after stem cell transplant
I also achieved complete remission following my transplant. The poster that advised giving it some time is correct. My recent one year post transplant lab results are even better than they were three months after the transplant. I know everyone responds differently, but hopefully your spouses next tests will show improvement.
Re: Myeloma traces returning after stem cell transplant
Thanks Lady Lib.
I continually tell my husband he has to give it time, maybe as much as 2 years. His doctor also keeps telling him he is like a 3 month old infant. I think he thought once he had the transplant, he would be the man he was prior to being sick in December 2012.
Thanks so much for the encouragement.
I continually tell my husband he has to give it time, maybe as much as 2 years. His doctor also keeps telling him he is like a 3 month old infant. I think he thought once he had the transplant, he would be the man he was prior to being sick in December 2012.
Thanks so much for the encouragement.
Re: Myeloma traces returning after stem cell transplant
Thanks, Juliofrippo. This will keep me encouraged.
Re: Myeloma traces returning after stem cell transplant
Here are the numbers of the tests that the oncologist tracks:
Serum Immunofixation (1/15/13) 2.63 IgG
(6/5/14) IgG is seen, but too faint to quantify, at the end of a suppressed but reactive polyclonal background
Immunoglobulin A (1/15/13) 113
(6/5/14) 13
Immunoglobulin G (1/15/13) 2633
(6/5/14) 616
Immunoglobulin M (1/15/13) 24
(6/5/14) 14
Kappa Free Light Chains (1/15/13) 107.17
(6/5/14) .80
Lambda Free Light Chains (1/15/13) 2.64
(6/5/14) .54
Kappa/Lambda Free Light Chain Ratio (1/15/13) 40.595
(6/5/14) 1.481
Beta 2-Microglobulin, Serum (1/15/14) 8.19
(6/5/14) 2.45
My husband has had hip pain from the beginning. On February 10, 2014 prior to transplant, the skeletal survey showed he has pathological fractures at T8 and T9 and bony lytic lesions in the bony calvarium. I thought they were going to run another skeletal survey along with this round of testing but what was scheduled instead was an EEG/EMG. Will those tests tell me if there has been further damage to the skull?
Serum Immunofixation (1/15/13) 2.63 IgG
(6/5/14) IgG is seen, but too faint to quantify, at the end of a suppressed but reactive polyclonal background
Immunoglobulin A (1/15/13) 113
(6/5/14) 13
Immunoglobulin G (1/15/13) 2633
(6/5/14) 616
Immunoglobulin M (1/15/13) 24
(6/5/14) 14
Kappa Free Light Chains (1/15/13) 107.17
(6/5/14) .80
Lambda Free Light Chains (1/15/13) 2.64
(6/5/14) .54
Kappa/Lambda Free Light Chain Ratio (1/15/13) 40.595
(6/5/14) 1.481
Beta 2-Microglobulin, Serum (1/15/14) 8.19
(6/5/14) 2.45
My husband has had hip pain from the beginning. On February 10, 2014 prior to transplant, the skeletal survey showed he has pathological fractures at T8 and T9 and bony lytic lesions in the bony calvarium. I thought they were going to run another skeletal survey along with this round of testing but what was scheduled instead was an EEG/EMG. Will those tests tell me if there has been further damage to the skull?
Re: Myeloma traces returning after stem cell transplant
Thanks, Joy. I know everyone is different. It does help to hear about what someone else is experiencing with the same disease because when he has something similar, then I can say, well this is pretty normal. We have been married for 33 years and I am just trying to keep him around for a while longer and do what ever I can to help him recover.
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