Thank you all!
What a great group ! Sorry to have to meet you under these circumstances, as well. I must tell you that one of the reasons I do like my oncologist is that he is always reachable. I have had conversations with him on a Sunday afternoon at 2 pm that last 30 minutes! He never rushes you off the phone or out of his office, so he is a keeper for that reason. I am hoping that I can continue to see him and he can work in conjunction with the Dr. I mentioned before at Weil Cornell. My onc. knows this other dr., so maybe I can get the best of both possible worlds, seeing one for my regular treatments, and seeing the other in a consultative role. I would hate to give up that accessibility factor!
Forums
Re: Introduction
Ellen - that is a huge bonus! I have found over the years that I may not always agree 100% with my physician but I always try to see their point of view, especially when they take the time to truly get to know me. So valuable!
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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: Introduction
Dear Ellen, I too have been following information via the 'myeloma family' since being diagnosed with MGUS 2 months ago. This is my baby step into the myeloma community, prompted by your introduction.
My father was diagnosed with multiple myeloma in 1973 and passed away in 1975 when I was 20 years old. Imagine my despair when my MGUS was diagnosed after my GP ( an integrative medical practitioner ) insisted that I consult a hematologist following persistent neutropenia. Thanks to the information available on the Myeloma Beacon, I am in a much better space than 2 months ago, thank you all for being a life line!
I have unique circumstances in that I've been taking curcumin, resveratrol, vit D, omegas and high doses of vit C for 4 years as part of a integrative health optimizing regime. My hematologist requested that I stop taking all nutraceuticals until she is happy that my baseline medical data is correct and complete, her concern being that she is not knowledgeable about possible side effects. I have complied but I am now so worried that the curcumin may have kept my plasma cells under control and that I may have adversely affected my markers. It has been 6 weeks of no neutraceuticals and I am having another SPEP tomorrow. My previous results were 12g/L IgG lamda, 0.02 % plasma cell (can't understand how so little plasma cells can make so much monoclonal protein), light chain ratio 1,24 and Bence Jones protein 0,04 g/L.
All the best with managing your condition. We are truly blessed with treatment options not available to our fathers!
My father was diagnosed with multiple myeloma in 1973 and passed away in 1975 when I was 20 years old. Imagine my despair when my MGUS was diagnosed after my GP ( an integrative medical practitioner ) insisted that I consult a hematologist following persistent neutropenia. Thanks to the information available on the Myeloma Beacon, I am in a much better space than 2 months ago, thank you all for being a life line!
I have unique circumstances in that I've been taking curcumin, resveratrol, vit D, omegas and high doses of vit C for 4 years as part of a integrative health optimizing regime. My hematologist requested that I stop taking all nutraceuticals until she is happy that my baseline medical data is correct and complete, her concern being that she is not knowledgeable about possible side effects. I have complied but I am now so worried that the curcumin may have kept my plasma cells under control and that I may have adversely affected my markers. It has been 6 weeks of no neutraceuticals and I am having another SPEP tomorrow. My previous results were 12g/L IgG lamda, 0.02 % plasma cell (can't understand how so little plasma cells can make so much monoclonal protein), light chain ratio 1,24 and Bence Jones protein 0,04 g/L.
All the best with managing your condition. We are truly blessed with treatment options not available to our fathers!
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
Re: Introduction
Mary sorry to welcome you into our community. As far as your questions about neutraceuticals i can only tell you that my onc is very strict with taking supplements. He doesnt want anything to possibly interfere with chemo. However you are not taking any chemo so you are in a different category. There are many people on the form who take supplements so perhaps you can get some info from them. I hope you never progress from your mgus!
Re: Introduction
Ellen-
You stated that you have been taking Prolia for osteoporosis. This is a much, much, much lower dose of Bisphosphonates than either Zometa or Aredia and isn't strong enough for bone lesions from Myeloma.
I'm glad that you are searching for the Myeloma specialist that is right for you. And, having a specialist who can guide your local oncologist with your treatment is such a good plan. There's no need to give up the oncologist who you have worked well with and like as long as s/he is open to working with a specialist, too. I hope that your upcoming appointment at Weill goes well.
Spanish Mary-
Your oncologist is being very careful in asking you to stop all of your supplements so that she can get a clear picture of what is going on with you. Once your diagnostics are completed you should be able to resume your regimen as long as you aren't taking any of the drugs for Myeloma. Curcumin is one of the ones that many of the multiple myeloma specialists will recommend. I've been taking it for 5 years by my oncologist's recommendation. I also take Vit D3, calcium, magnesium and a multi-vitamin. If you progress to Myeloma at some point and have Velcade as one of your drugs the Vit C shouldn't be taken because it interferes with the action of Velcade.
Gradually you will learn what is ok and what isn't should you progress. But, not everyone who is diagnosed with MGUS progresses to active Myeloma. Hopefully you will be one of the lucky ones who never progresses.
Bone marrow biopsies are important in the diagnosis process, but they aren't always really accurate in giving a level of plasma cells present. The needle samples at one particular location in the bone marrow and may not sample at a location where there are many plasma cells. So, that could explain why your plasma cell percentage is so low when your SPEP is relatively high.
The best to both of you,
Nancy in Phila
You stated that you have been taking Prolia for osteoporosis. This is a much, much, much lower dose of Bisphosphonates than either Zometa or Aredia and isn't strong enough for bone lesions from Myeloma.
I'm glad that you are searching for the Myeloma specialist that is right for you. And, having a specialist who can guide your local oncologist with your treatment is such a good plan. There's no need to give up the oncologist who you have worked well with and like as long as s/he is open to working with a specialist, too. I hope that your upcoming appointment at Weill goes well.
Spanish Mary-
Your oncologist is being very careful in asking you to stop all of your supplements so that she can get a clear picture of what is going on with you. Once your diagnostics are completed you should be able to resume your regimen as long as you aren't taking any of the drugs for Myeloma. Curcumin is one of the ones that many of the multiple myeloma specialists will recommend. I've been taking it for 5 years by my oncologist's recommendation. I also take Vit D3, calcium, magnesium and a multi-vitamin. If you progress to Myeloma at some point and have Velcade as one of your drugs the Vit C shouldn't be taken because it interferes with the action of Velcade.
Gradually you will learn what is ok and what isn't should you progress. But, not everyone who is diagnosed with MGUS progresses to active Myeloma. Hopefully you will be one of the lucky ones who never progresses.
Bone marrow biopsies are important in the diagnosis process, but they aren't always really accurate in giving a level of plasma cells present. The needle samples at one particular location in the bone marrow and may not sample at a location where there are many plasma cells. So, that could explain why your plasma cell percentage is so low when your SPEP is relatively high.
The best to both of you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Introduction
Nancy,
Thanks so much for your input. There is a reason why I am taking Prolia, and not one of the other meds for osteoperosis. I have some kidney damage from the high levels of light chains that passed through before things got under control. Apparently, the stronger anti-osteoperosis drugs affect the kidneys. That is the explanation I received from my oncologist. My creatinine is running between 1.3 and 1.4. We are still not 100% sure if the damage to my kidneys is permanent, but it could be.
Thanks, again!
Ellen
Thanks so much for your input. There is a reason why I am taking Prolia, and not one of the other meds for osteoperosis. I have some kidney damage from the high levels of light chains that passed through before things got under control. Apparently, the stronger anti-osteoperosis drugs affect the kidneys. That is the explanation I received from my oncologist. My creatinine is running between 1.3 and 1.4. We are still not 100% sure if the damage to my kidneys is permanent, but it could be.
Thanks, again!
Ellen
Re: Introduction
Ellen and Nancy,
Thank you for your thoughts and good wishes. What a strange situation to be grateful for MGUS, but I truly am.
I am also a mother of two young adults, and obviously concerned about genetic links, but my fish analysis was negative for the common substitutions/deletions. My husband has the same concern as you Nancy that my low BM plasma cell % may be a sampling issue, but I am in no hurry to have that repeated!
I see my hematologist at the end of the week and hopefully I can resume taking curcumin afterwards. I've had another blood test today and if my M spike has increased over the last 6 weeks it will attest to curcumin's efficiency in targeting plasma cells.
Thank you for your thoughts and good wishes. What a strange situation to be grateful for MGUS, but I truly am.
I am also a mother of two young adults, and obviously concerned about genetic links, but my fish analysis was negative for the common substitutions/deletions. My husband has the same concern as you Nancy that my low BM plasma cell % may be a sampling issue, but I am in no hurry to have that repeated!
I see my hematologist at the end of the week and hopefully I can resume taking curcumin afterwards. I've had another blood test today and if my M spike has increased over the last 6 weeks it will attest to curcumin's efficiency in targeting plasma cells.
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
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