Good morning!
I am a 53 year old mother / grandmother recently diagnosed with multiple myeloma. My journey with this condition began back in the summer of 2012 when I went to my primary care physician with headaches. I was having headaches on a daily basis and they were on the pain scale around a 7 and I needed to know why. He did test after test, sent me to a neurologist and nothing was found to explain the headaches, but an M spike was reported on a set of labs and it was off to a hematologist.
The hematologist did more tests and a bone marrow biopsy ( <9% plasma cells) and diagnosed me with MGUS in October 2012. Skeletal x-rays showed no lesions, but I got no answers for my headaches. Long story short here, I ended up seeing a chiropractor and, after talking with him, he made me remember a fall I had taken (from a counter top while I was painting my daughter's kitchen) and he started treating my neck. Within a few weeks the headaches were gone!
I continued to follow up with the hematologist / oncologist every six months for blood work and 24-hour urine collections and everything stayed pretty stable. M spike <1, blood counts normal, and no problems with urine. Things started to change in July of 2014. M-spike went up to 1.5 g/dL (15 g/L), IgG doubled, IgA and IgM dropped. Follow up was set for 3 months instead of 6.
The blood work in October of 2014 showed more changes. M-spike was now 2 g/dL, RBC and Hct was now low as well. Immunofixation showed IgG monoclonal protein with kappa light chain specificity. Bence Jones protein positive; kappa type. My doctor ordered a full skeletal xray again and set to follow up in 3 months.
That brings us to where I am now. Labs in January showed an M spike of 2.3 g/dL and xray report showed lesions in both femurs. Another bone marrow biopsy was done and that showed 70% plasma cells. I now officially have multiple myeloma. It was frightening to hear that diagnosis even though we saw it coming. I found it very difficult to tell people I had cancer, that I was going to start chemotherapy. A lot of emotions to deal with and all while working full time and managing a household. We are very active in our church and I find a lot of comfort and support there.
My chemotherapy regimen began on March 10, 2015. Velcade / Cytoxan / dex in three week cycles. I am taking amitriptyline (for pain management), Cipro (ciprofloxacin) and acyclovir. I have met with the myeloma specialist at Moffitt Cancer Center in Tampa, who agreed with what my oncologist is doing. I will meet with him again in June and also with the transplant doctor and transplant team.
I am about to finish my third cycle of chemo. I have some peripheral neuropathy in my hands and feet, which I understand is a side effect of the Velcade. Fatigue and constipation are my biggest complaints and, in the last few weeks, I have developed a ringing in my left ear that is driving me crazy! Also of note, the blood work done at the end of my first cycle of chemo showed my M spike up to 3.1 g/dL and after the second cycle it was up to 3.9 g/dL. I do not like this and my oncologist called it "disconcerting".
Anyone else experience a rise in their M spike after starting therapy. The doctor said that he has seen some patients have a dramatic drop after the third or fourth cycle. So we are going to see what happens. I will be doing that blood work on Tuesday, May 5.
I have a lot of faith in God and in my doctors. I know that I will reach remission and continue living a full and productive life. There are many obstacles to overcome to get there and that's ok. I will get there.
Thank you for taking the time to read this. There are so many things I wanted to say and now can't even remember!! LOL
Love and Blessings!
Clair
Forums
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ClairB - Name: Clair B
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 12, 2015
- Age at diagnosis: 53
Re: MGUS to multiple myeloma
Thank you, Clair, for introducing yourself and sharing with everyone your MGUS and multiple myeloma experience so far. We're sorry that your MGUS eventually progressed to multiple myeloma, but we're glad to hear that your treatment is being coordinated with myeloma specialists at Moffitt. As you may know, one of the Moffitt myeloma specialists – Dr. Kenneth Shain – contributes regularly to discussions here at The Beacon.
We hope that the articles, columns, and forum discussions here at The Beacon have been helpful to you already. We're also sure that you will get feedback from other forum participants in regard to your question about M-spike changes during initial therapy. If you have additional questions, feel free to post them wherever you feel they might best fit here in the forum.
We look forward to hearing more about your myeloma journey as it continues to stretch out over many, many years into the future!
We hope that the articles, columns, and forum discussions here at The Beacon have been helpful to you already. We're also sure that you will get feedback from other forum participants in regard to your question about M-spike changes during initial therapy. If you have additional questions, feel free to post them wherever you feel they might best fit here in the forum.
We look forward to hearing more about your myeloma journey as it continues to stretch out over many, many years into the future!
Re: MGUS to multiple myeloma
Clair,
I am sorry to hear your condition progressed to full-blown multiple myeloma, but I have to wonder where you would be now had you never had those headaches and discovered to have MGUS several years ago? Good thing you were being followed! I've read a recent study / article that said patients who were followed with MGUS and progressed to multiple myeloma have a better response to treatment (all things being equal). I hope and pray that this is true for you as well!
I hope someone will chime in regarding your increase in m-spike.
And as someone who is very active in her church as well, it is a great comfort to have a church family and a strong faith!
Toni
I am sorry to hear your condition progressed to full-blown multiple myeloma, but I have to wonder where you would be now had you never had those headaches and discovered to have MGUS several years ago? Good thing you were being followed! I've read a recent study / article that said patients who were followed with MGUS and progressed to multiple myeloma have a better response to treatment (all things being equal). I hope and pray that this is true for you as well!
I hope someone will chime in regarding your increase in m-spike.
And as someone who is very active in her church as well, it is a great comfort to have a church family and a strong faith!
Toni
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS to multiple myeloma
I will do my best to help - the responses to therapy in myeloma can be somewhat unpredictable. Do you happen to know your cytogenetics / FISH results (the genetics) related to the myeloma? This is important here.
It seems that your myeloma progressed rather rapidly, and may be progressing through this initial therapy. I hope the next numbers are better, but most responses to Velcade-based therapy occur within the first two cycles.
Your doctor may consider switching the Cytoxan to Revlimid for the next cycle - that is probably what I would do based on your summary.
Also, hopefully you are getting the Velcade subcutaneously as this causes less neuropathy when compared with intravenous. Transitioning to weekly Velcade (as opposed to twice weekly) can help too.
I am happy you found this website, and hope the Beacon community can offer guidance and support as you go forward.
It seems that your myeloma progressed rather rapidly, and may be progressing through this initial therapy. I hope the next numbers are better, but most responses to Velcade-based therapy occur within the first two cycles.
Your doctor may consider switching the Cytoxan to Revlimid for the next cycle - that is probably what I would do based on your summary.
Also, hopefully you are getting the Velcade subcutaneously as this causes less neuropathy when compared with intravenous. Transitioning to weekly Velcade (as opposed to twice weekly) can help too.
I am happy you found this website, and hope the Beacon community can offer guidance and support as you go forward.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: MGUS to multiple myeloma
I did not respond to Cytoxan either. I was switched to Revlimid / Velcade / dex and had a much better response. I then went on to have a stem cell transplant. Reached a very good remission and I was put on Revlimid maintenance, which was not my friend, had to be switched to Velcade maintenance. So far so good!
You may want to find a multiple myeloma specialist to see regularly. That is the best thing I did! I started out with a hem / onc also.
Good luck! We are all in this together.
You may want to find a multiple myeloma specialist to see regularly. That is the best thing I did! I started out with a hem / onc also.
Good luck! We are all in this together.
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Karen Foster
Re: MGUS to multiple myeloma
Hi and thank you all for your reponses!
As I am reading more and more of the articles here, I am learning so much more about multiple myeloma. It is encouraging to see so many people going through this and having such success!
I did see Dr. Shain at Moffitt Cancer Center and am scheduled to see him again in June. My ocologist consults with him regularly. In fact, he worked at Moffitt with Dr. Shain, so I feel like I have the best of both worlds (a local oncologist who deals with a lot of myeloma cases, and a myeloma specialist at my disposal)!
The FISH interpretation from my bone marrow transplant in February says:
Positive for hyperdiploidy in chromosomes 3, 5, and 9
Normal results seen in the 1, 13, 14(IgH) and 17 probe sets.
Fluorescence in situ hybridization (FISH) analysis was performed using a multiple myeloma specific set of FISH probes. This study revealed hyperdiploidy in probe 3 (3R, 31.0%, normal < 8.3%), probe 5 (4R4G, 41.5%, normal < 2.7%) and probe 9 (3G, 22.5%, normal < 9.0% and 4G, 13.5%, normal < 2.5%) indicative of a trisomy 3 (+3), tetrasomy 5 (+5,+5), trisomy 9 (+9) and tetrasomy 9 (+9,+9). This represents an ABNORMAL result. All other remaining probes in the multiple myeloma FISH panel showed normal results. This represents an ABNORMAL result.
Hyperdiploidy in multiple myeloma is a frequent finding, in which trisomy involving at least one chromosome can be seen as high as 83% of patients (trisomy 9 is most frequent). Hyperdiploidy is associated with low-risk or standard risk depending on the International staging system (ISS) score (1, 3). No High Risk chromosomal abnormalities were observed (3).
I see my oncologist next Tuesday (May 12) and we will have the blood work results from tomorrow's lab work. Hopefully, the M spike will have gone down and we won't have to change anything. If it is up again, I will definitely bring up the idea of changing my drug regimen.
The next question is: With this "non response", I assume that it will extend the number of cycles of chemo that I will have to take and therefore delay the SCT?
Clair
As I am reading more and more of the articles here, I am learning so much more about multiple myeloma. It is encouraging to see so many people going through this and having such success!
I did see Dr. Shain at Moffitt Cancer Center and am scheduled to see him again in June. My ocologist consults with him regularly. In fact, he worked at Moffitt with Dr. Shain, so I feel like I have the best of both worlds (a local oncologist who deals with a lot of myeloma cases, and a myeloma specialist at my disposal)!
The FISH interpretation from my bone marrow transplant in February says:
Positive for hyperdiploidy in chromosomes 3, 5, and 9
Normal results seen in the 1, 13, 14(IgH) and 17 probe sets.
Fluorescence in situ hybridization (FISH) analysis was performed using a multiple myeloma specific set of FISH probes. This study revealed hyperdiploidy in probe 3 (3R, 31.0%, normal < 8.3%), probe 5 (4R4G, 41.5%, normal < 2.7%) and probe 9 (3G, 22.5%, normal < 9.0% and 4G, 13.5%, normal < 2.5%) indicative of a trisomy 3 (+3), tetrasomy 5 (+5,+5), trisomy 9 (+9) and tetrasomy 9 (+9,+9). This represents an ABNORMAL result. All other remaining probes in the multiple myeloma FISH panel showed normal results. This represents an ABNORMAL result.
Hyperdiploidy in multiple myeloma is a frequent finding, in which trisomy involving at least one chromosome can be seen as high as 83% of patients (trisomy 9 is most frequent). Hyperdiploidy is associated with low-risk or standard risk depending on the International staging system (ISS) score (1, 3). No High Risk chromosomal abnormalities were observed (3).
I see my oncologist next Tuesday (May 12) and we will have the blood work results from tomorrow's lab work. Hopefully, the M spike will have gone down and we won't have to change anything. If it is up again, I will definitely bring up the idea of changing my drug regimen.
The next question is: With this "non response", I assume that it will extend the number of cycles of chemo that I will have to take and therefore delay the SCT?
Clair
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ClairB - Name: Clair B
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 12, 2015
- Age at diagnosis: 53
Re: MGUS to multiple myeloma
The hyperdiploidy (extra chromosomes) is actually a good thing related to prognosis. But, yes, a reasonable response (at least 50% improvement in the myeloma numbers) would ordinarily be needed before transplant. Sometimes, with the right regimen, this can happen quickly. So hopefully you will see those needed results without too much delay. That said, it is generally a goal to achieve the best possible response before the transplant, so patience is recommended.
Hope this helps.
Hope this helps.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: MGUS to multiple myeloma
Clair,
Your story sounds very similar to mine, although I was diagnosed in 2013. What you need to know is that immunoglobulins like your abnormal IgG take time to leave the system. It is like waves after a storm. The time for a drug or an abnormal protein to decrease to half of its original value is called half-life and is denoted t1/2. For immunoglobulins, it is many weeks, if not months. Being medically trained, I have looked in the literature but not found any really (to me) believable numbers for the t1/2. My guess is it is very variable and dependent on the size, shape, etc, of the pathological protein.
Your ringing in the ears (tinnitus): I had that, and knew it from before as a result of my gout, which was drastically worsened by the valacyclovir treatment. Valacyclovir is broken down to xanthine and uric acid, which forms gout crystals. Try drinking quite a bit of water, also in the 1/3 of the day which is called the night. A continuous intake dilutes the acidity of the urine so your excretion of the uric acid can be better maintained.
The unfriendly cells in your body are now dying and that releases a lot of uric acid, forming nucleotides from DNA, ATP, etc. They are also broken down to uric acid, adding to the need of excreting more uric acid.
Whether your extra increase in blood protein could be a sign of release from dying cells is a question hard to answer, as I'm not an expert in the field, and is not important the way I see it. What is is that you now know that there is a real lag in the time for the bad protein to go away and that you might in fact be improving "as we speak". In me, one sign was that the drop in my red cells stopped, and there was even a slight increase.
So, stay hopeful and try to be strong and prepare by exercise, etc, for any treatment such as SCT or one of the many individualized that I am sure is there for you.
Good luck!
Your story sounds very similar to mine, although I was diagnosed in 2013. What you need to know is that immunoglobulins like your abnormal IgG take time to leave the system. It is like waves after a storm. The time for a drug or an abnormal protein to decrease to half of its original value is called half-life and is denoted t1/2. For immunoglobulins, it is many weeks, if not months. Being medically trained, I have looked in the literature but not found any really (to me) believable numbers for the t1/2. My guess is it is very variable and dependent on the size, shape, etc, of the pathological protein.
Your ringing in the ears (tinnitus): I had that, and knew it from before as a result of my gout, which was drastically worsened by the valacyclovir treatment. Valacyclovir is broken down to xanthine and uric acid, which forms gout crystals. Try drinking quite a bit of water, also in the 1/3 of the day which is called the night. A continuous intake dilutes the acidity of the urine so your excretion of the uric acid can be better maintained.
The unfriendly cells in your body are now dying and that releases a lot of uric acid, forming nucleotides from DNA, ATP, etc. They are also broken down to uric acid, adding to the need of excreting more uric acid.
Whether your extra increase in blood protein could be a sign of release from dying cells is a question hard to answer, as I'm not an expert in the field, and is not important the way I see it. What is is that you now know that there is a real lag in the time for the bad protein to go away and that you might in fact be improving "as we speak". In me, one sign was that the drop in my red cells stopped, and there was even a slight increase.
So, stay hopeful and try to be strong and prepare by exercise, etc, for any treatment such as SCT or one of the many individualized that I am sure is there for you.
Good luck!
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Erik2
Re: MGUS to multiple myeloma
Erik2 – Thanks for that posting. It was very informative – you make a lot of important points.
Clair - One reason that doctors look at a lot of a patient's lab results, rather than just the M-spike, is because of the points that Erik2 makes about things like the half life of immunoglobulin molecules.
For example, the half life of free light chains is MUCH less than the half life of immunoglobulin molecules, which is one reason that doctors consider your kappa and lambda free light chain levels to be a "leading indicator" of what is likely to happen with your M-spike.
Also, if your M-spike is staying steady, or even increasing slightly, but other lab results are improving, this also can be a sign that, overall, treatment is having a positive effect. So it's useful to track things like all your immunoglobulin levels (IgG, IgA, and IgM), and things like your blood calcium level, which will give you an idea whether bone destruction is occurring or not. (High calcium levels in a myeloma patient can be a sign that the disease is eating away at the bones.)
Good luck, and keep us posted on how you are doing.
Clair - One reason that doctors look at a lot of a patient's lab results, rather than just the M-spike, is because of the points that Erik2 makes about things like the half life of immunoglobulin molecules.
For example, the half life of free light chains is MUCH less than the half life of immunoglobulin molecules, which is one reason that doctors consider your kappa and lambda free light chain levels to be a "leading indicator" of what is likely to happen with your M-spike.
Also, if your M-spike is staying steady, or even increasing slightly, but other lab results are improving, this also can be a sign that, overall, treatment is having a positive effect. So it's useful to track things like all your immunoglobulin levels (IgG, IgA, and IgM), and things like your blood calcium level, which will give you an idea whether bone destruction is occurring or not. (High calcium levels in a myeloma patient can be a sign that the disease is eating away at the bones.)
Good luck, and keep us posted on how you are doing.
Re: MGUS to multiple myeloma
Good Afternoon!!
Just a quick update. I did see my hem/onc on Tuesday and we went over the blood work from last week. My M spike came down from the 3.9 to 2.5 and IGg came down 1000 points as well. So, we are feeling better about being on the right track with my treatments! I am very relieved!!
Tuesday was the start of the 4th of 6 cycles of chemo and I am glad to be more than half way through this part of my treatment.
Thank you all for your responses!! Stay in good health!
Love and blessings
Clair
Just a quick update. I did see my hem/onc on Tuesday and we went over the blood work from last week. My M spike came down from the 3.9 to 2.5 and IGg came down 1000 points as well. So, we are feeling better about being on the right track with my treatments! I am very relieved!!
Tuesday was the start of the 4th of 6 cycles of chemo and I am glad to be more than half way through this part of my treatment.
Thank you all for your responses!! Stay in good health!
Love and blessings
Clair
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ClairB - Name: Clair B
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 12, 2015
- Age at diagnosis: 53
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