Hi,
My name is Tony, age 49, and I have recently transitioned from MGUS to multiple myeloma..
The MGUS showed up a couple of years ago as high blood protein levels, confirmed with monoclonal protein evaluation and free light chains. M-protein (IgG) at that point was 1.9 g/dL (19 g/l), free light chain ratio was 0.21 (lambda was high). M-proteins drifted up over the next 18 months to 2.2, then took off in January 2017 to 2.9.
A yearly skeletal survey revealed some bone loss, but no lesions. And while I have always suffered from lower back pain, a new one had developed and was not going away with rest. My hematologist / oncologist wasn't too concerned but suggested a bone marrow biopsy if the M-protein went above 3.0. However, my PCP was concerned and scheduled me for an MRI of the lumbar and thorax regions. Unfortunately, before the MRI, I collapsed in agonizing back pain and ended up unable to stand, and consigned to crawling around the house. After a couple of false starts, I got back to walking just before the MRI. Those results showed lesions around the pelvis (recent source of back pain) and several vertebrae. Multiple myeloma was now the working diagnosis.
Then it was back for another skeletal survey, which showed the above legions, plus some in the femurs and skull. That seemed like a big change in 3 months, to me. Anyway, that prompted a bone marrow biopsy and PET scan. Bone marrow results were 37% plasma cells, and 'evolving' mutations in the chromosomes, but none of the standard high-risk factors like del 17p or t(4:14) (going from memory, there, so don't quote me on those high-risk factors).
Considering I'd had MGUS for 2 years, everything seemed to be taking so long – a week here, two weeks there to get results, another 2 weeks to see the oncologist. In the end, I got so frustrated that I asked to start the Zometa treatment ASAP because of my fragile back situation.
Fortunately, they agreed, and I had my first Zometa treatment on April 29, 2017. I felt a bit under the weather that night but felt absolutely worst the next day. Muscle pain, joint pain, unable to move in bed through pain and weakness. It wasn't nice, at all, but the next day, all that had gone, and each day after that I had less back pain than before the Zometa and more strength. I went from 'barely able to stand' before treatment, to comfortably walking around the house and outside in just 4 days.
I'm so glad I pushed for the treatment early. As many have mentioned in the community, 'you are your own best advocate' - so glad I pushed for the Zometa treatment to start immediately.
Improvements came more slowly after that, but they still continue. My back is stable enough to walk around for about an hour, thus exercising my muscles and stabilizing my back further.
May 5th 2017 was the follow-up meeting with the oncologist and his PA, after all the tests and their meeting with the tumor board of the hospital. Much to my surprise, they offered a clinical trial option. By random selection, I would either get the current standard of care (Velcade-Revlimid-dexamethasone, or VRd), or Kyprolis, Revlimid, and dexamethasone . A quick review of the stats for Kyprolis in relapsed or refractory multiple myeloma indicated that remissions were about twice as long and overall survival was longer than VRd, so I jumped at the chance.
On May 11th I found out that I was randomized into the standard of care arm of the trial. Somewhat disappointing, but I figure the Kyprolis option will be available if and when I need a second round of treatment.
So the trial calls for 12 3-week cycles, then 2 years maintenance on Revlimid and dexamethasone. Not sure how ethical it is, but if my numbers get low enough during the trial, I will probably leave to do an autologous stem cell transplant. Doctors and trial nurse say that is absolutely fine, but I still feel bad about planning to leave the trial.
On May 15th I got my first subcutaneous injections of Velcade and started on the dex pills. Felt a bit 'fluey' that night, a bit nauseous, but otherwise fine the next morning. Revlimid pills were late getting approved by the insurance company, so I won't start those until my second injection of Velcade. Presumably, side effects might build up over time.
As an aside, I got a second opinion from a University medical system in the area, and they said exactly the same thing, same trial was available through them, or the same standard treatment would be used. Comforting that they aligned, disappointing that there isn't something subtly better. She estimated I'd be in the 6-8 year median life expectancy population, being relatively young and and having no other major problems yet, other than bone loss. Personally, I'm aiming for 10 years, with the expectancy that treatments will improve in that period and prolong survival further.
That's about it for now. So glad I have found a knowledgeable community at the Beacon.
Tony
Forums
10 posts
• Page 1 of 1
-
Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
Re: Tony, newly diagnosed with multiple myeloma
Welcome to the Beacon. Question: Your doctor actually said this: "She estimated I'd be in the 6-8 year median life expectancy population"?
Re: Tony, newly diagnosed with multiple myeloma
Hi Tony.
I was diagnosed December 16. I coughed, broke my l3, continued going to ortho doctor. He did MRI. Said after a few months nothing he could do. I went to new ortho. Showed him that MRI. He saw a spot on my hip, told me to go to oncology. Did biopsy in December (still hurts). Said I have stage 3.
Started Velcade, dex, and 35 mg Revlimid. After 6 months I am beyond fatigue, stopped everything, now waiting on stem cell transplant 3 weeks.
I was diagnosed December 16. I coughed, broke my l3, continued going to ortho doctor. He did MRI. Said after a few months nothing he could do. I went to new ortho. Showed him that MRI. He saw a spot on my hip, told me to go to oncology. Did biopsy in December (still hurts). Said I have stage 3.
Started Velcade, dex, and 35 mg Revlimid. After 6 months I am beyond fatigue, stopped everything, now waiting on stem cell transplant 3 weeks.
Re: Tony, newly diagnosed with multiple myeloma
SlimMoe,
Yes, the second opinion doctor actually said 6-8 years as a median. Apart from asking what risk level I was, her comment was unsolicited. Anyway, that made me feel better than my regular oncologist, who made 10-year survival seem like an absolute miracle!
Tony
Yes, the second opinion doctor actually said 6-8 years as a median. Apart from asking what risk level I was, her comment was unsolicited. Anyway, that made me feel better than my regular oncologist, who made 10-year survival seem like an absolute miracle!
Tony
-
Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
Re: Tony, newly diagnosed with multiple myeloma
Pgwade,
Sorry to hear your first couple of docs were not helpful. All the advice I have received is to get to see an multiple myeloma specialist, even if they are hours away, then have them oversee a regular oncologist in your area if no specialist is available nearby. Where are you located? Some of the more established members might have a recommendation for a treatment center with specialists in your area.
Other advice I have read is that staging isn't so relevant in multiple myeloma. How you respond to treatment is more important. Do you know how you M-protein and free light chain levels have responded during treatment?
I, too, am embarking on the Velcade, Revlimid, and dexamethasone regimen. Two doses of Velcade, one Revlimid tablet so far.
Good luck with the stem cell transplant.
Tony
Sorry to hear your first couple of docs were not helpful. All the advice I have received is to get to see an multiple myeloma specialist, even if they are hours away, then have them oversee a regular oncologist in your area if no specialist is available nearby. Where are you located? Some of the more established members might have a recommendation for a treatment center with specialists in your area.
Other advice I have read is that staging isn't so relevant in multiple myeloma. How you respond to treatment is more important. Do you know how you M-protein and free light chain levels have responded during treatment?
I, too, am embarking on the Velcade, Revlimid, and dexamethasone regimen. Two doses of Velcade, one Revlimid tablet so far.
Good luck with the stem cell transplant.
Tony
-
Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
Re: Tony, newly diagnosed with multiple myeloma
Tony,
Welcome to the forum. Your experience mirrors parts of mine and so many others on the forum. For such a newcomer you seem very knowledgeable. I understand your concern about leaving the clinical trial and receiving an autologous stem cell transplant (ASCT). However, before reading your desire to pursue an ASCT, I was thinking to myself, "This young healthy person could really benefit from an ASCT and not just a three-drug regimen". But I am from the camp the younger and healthier you are, the more aggressive your treatment plan.
My three compression fractures resolved themselves for the most part due to my myeloma treatment, Zometa, and just as importantly vertebroplasty or kyphoplasty. I would recommend one of those two procedures. Mine was performed by a local neurosurgeon and actually led to my myeloma diagnosis. I can't say this enough: Get with a myeloma specialist if at all possible. I'm three years post diagnosis and I don't even think of my expiration date. I'm budgeting my retirement plans based upon living another 25 years. That will get me to 82. From one engineer to another, you are doing the right things.
Welcome to the forum. Your experience mirrors parts of mine and so many others on the forum. For such a newcomer you seem very knowledgeable. I understand your concern about leaving the clinical trial and receiving an autologous stem cell transplant (ASCT). However, before reading your desire to pursue an ASCT, I was thinking to myself, "This young healthy person could really benefit from an ASCT and not just a three-drug regimen". But I am from the camp the younger and healthier you are, the more aggressive your treatment plan.
My three compression fractures resolved themselves for the most part due to my myeloma treatment, Zometa, and just as importantly vertebroplasty or kyphoplasty. I would recommend one of those two procedures. Mine was performed by a local neurosurgeon and actually led to my myeloma diagnosis. I can't say this enough: Get with a myeloma specialist if at all possible. I'm three years post diagnosis and I don't even think of my expiration date. I'm budgeting my retirement plans based upon living another 25 years. That will get me to 82. From one engineer to another, you are doing the right things.
-
blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Tony, newly diagnosed with multiple myeloma
blueblood,
Thanks for the welcome. Everything I have learned has come from The Beacon, either directly or by reference.
I still swing wildly from day to day between 2 years and 15. Hopefully that will settle down as I respond to treatment. I've only been on all 3 drugs since Friday. 25 years seems like an excellent number for planning. I shall adopt that.
Cheers,
Tony
Thanks for the welcome. Everything I have learned has come from The Beacon, either directly or by reference.
I still swing wildly from day to day between 2 years and 15. Hopefully that will settle down as I respond to treatment. I've only been on all 3 drugs since Friday. 25 years seems like an excellent number for planning. I shall adopt that.
Cheers,
Tony
-
Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
Re: Tony, newly diagnosed with multiple myeloma
My husband was diagnosed in 2015 at the age of 47. He did Revlimid, Velcade, and dexamethasone (RVD) and an autologous stem cell transplant. He is doing well. I am surprised the doc pinpointed 6 - 8 years. Median does mean 50% do better than that and 50% do worse than the 6 - 8 years. Usually, a doc won't make such a prognosis. I am optimistic with the treatments and new developments my husband will have a chronic condition to manage for decades, if not a cure.
Re: Tony, newly diagnosed with multiple myeloma
When I received my myeloma diagnosis over five years ago, I was actually quite pleased to hear a survival probability of 5 to 8 years, I had feared it would be only a matter of months. Here I am today, feeling quite well, the only symptoms I have are from my maintenance treatment.
I believe the doctors are perhaps correct in giving newly diagnosed patients the survival time figures because it could be much worse, and it is quite true that over the course of a few years great research progress can be made. I believe recently figures have suggested survival averages may now have increased to 7 to 10 years if the patient is benefiting from the most effective treatments.
In my own non-professional capacity, I believe there are three elements relating to survival, starting with the age and fitness of the patient, the type and aggressiveness of the myeloma, and then the effectiveness of the treatment received. If all three of these elements are favourable, then the survival time will probably be better than if they are all unfavourable.
It is also important to remember that survival times are generally based upon historic figures. Therefore, we can hope that future survival figures will improve as treatments are also improved and fine tuned, especially when adapted to individual patients requirements.
We must all try to remain optimistic, hope and pray for the best and do not expect the worst!
Victor L
I believe the doctors are perhaps correct in giving newly diagnosed patients the survival time figures because it could be much worse, and it is quite true that over the course of a few years great research progress can be made. I believe recently figures have suggested survival averages may now have increased to 7 to 10 years if the patient is benefiting from the most effective treatments.
In my own non-professional capacity, I believe there are three elements relating to survival, starting with the age and fitness of the patient, the type and aggressiveness of the myeloma, and then the effectiveness of the treatment received. If all three of these elements are favourable, then the survival time will probably be better than if they are all unfavourable.
It is also important to remember that survival times are generally based upon historic figures. Therefore, we can hope that future survival figures will improve as treatments are also improved and fine tuned, especially when adapted to individual patients requirements.
We must all try to remain optimistic, hope and pray for the best and do not expect the worst!
Victor L
-
Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Tony, newly diagnosed with multiple myeloma
Folks,
Time for a refresh and an update.
Diagnosed with IgG lambda light chain multiple myeloma in April 2017, treatment with Revlimid, Velcade, and dexamethasone (RVD) started in June, along with Zometa treatment to help rebuild bones.
I have now completed 4 rounds of RVD treatment. IgG M-protein has gone down from 3.2 g/dL (32 g/l) pre treatment, to 1.2, 0.4, 0.4 and 0.2 g/dL after each round of treatment. The pause at 0.4 g/dL for two cycles was a bit worrying, but the final drop to 0.2 g/dL put my mind at rest that the drugs were still working. My doctor explained that this was classed as a very good partial response (VGPR 0.1 - 0.3 g/dL)
Three weeks after finishing the RVD treatment, many of the side effects have subsided. Only a little ringing in the ears, blood pressure is back up to a more normal 120/80, and scaly skin has all but returned to normal. The only lingering side effect is neuropathy in my hands, which consists of numbness at the fingertips and the feeling you get after your hands have been out in the cold too long and warmed up too fast ("chillblains", if you are familiar with the term). Similar for my feet.
We are now in the process of preparing for an autologous stem cell transplant on September 22, 2017. I'll keep everyone posted as best I can through the stem cell transplant.
Tony
Time for a refresh and an update.
Diagnosed with IgG lambda light chain multiple myeloma in April 2017, treatment with Revlimid, Velcade, and dexamethasone (RVD) started in June, along with Zometa treatment to help rebuild bones.
I have now completed 4 rounds of RVD treatment. IgG M-protein has gone down from 3.2 g/dL (32 g/l) pre treatment, to 1.2, 0.4, 0.4 and 0.2 g/dL after each round of treatment. The pause at 0.4 g/dL for two cycles was a bit worrying, but the final drop to 0.2 g/dL put my mind at rest that the drugs were still working. My doctor explained that this was classed as a very good partial response (VGPR 0.1 - 0.3 g/dL)
Three weeks after finishing the RVD treatment, many of the side effects have subsided. Only a little ringing in the ears, blood pressure is back up to a more normal 120/80, and scaly skin has all but returned to normal. The only lingering side effect is neuropathy in my hands, which consists of numbness at the fingertips and the feeling you get after your hands have been out in the cold too long and warmed up too fast ("chillblains", if you are familiar with the term). Similar for my feet.
We are now in the process of preparing for an autologous stem cell transplant on September 22, 2017. I'll keep everyone posted as best I can through the stem cell transplant.
Tony
-
Tony Y - Name: Tony Y
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2017
- Age at diagnosis: 49
10 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories