Hello all
I am not even sure where to start. A month ago my 74 yr old mother went to her GP after seeing her abdomen extended like she was 9 months pregnant. She has also been so out of breath and fatigued. A little over 2 yrs ago she became ill with a kind of septecemia called Streptocochus Bovis. Since then, although recovered, she has continued to have many bladder infections, root canals, and has been generally unwell. When she went to the GP we thought it would be continuing effects of the Strep B. Her blood work came back and she was immedietly referred to her gastroenterologist. She was anemic, and her blood work was all out of wack.
After 2 contrast CTs, almost liver biopsy (changed to lymph node biopsy) gallons of blood, and finally a bone marrow biopsy her new hemo-oncologist thought we had an answer- Multiple Myeloma. They continued to grow the culture. She was started on Lasix for fluid in lungs and prednisone. Two weeks ago she started subcu Velcade. Last week at her appointment her oncology doc told them further tests had revealed Extramedullary multiple myeloma. I do not know all her lab #'s as some do.
I live in Saudi Arabia and parents are in Oregon. My mom's anxiety level is so high i dont dare ask more questions. I do know her last chest xRay Wednesday showed more fluid so more Lasix. Hemoglobin is7.9 so she will have a blood transfusion Monday. She also starts Revlimid Tuesday to go with Velcade/ prednisone.
We are all so new to this and it is overwhelming. Information about what to expect with Extramedullary multiple myeloma is hard to find. They are fighting the good fight, but any information someone may have would be so greatly appreciated.
I am thinking of leaving my husband here to work after summer vacation and taking my two boys home to be with my mom. We dont know anymore how long she will have but her doc says realistic life expectancy was cut in half with the newest diagnosis.
Thank you for listening.
Kirsten
Forums
Re: Mom just diagnosed with extramedullary myeloma
Hello Kirsten,
I'm very sorry to hear about your mother's situation.
If you ask your mother's doctors about it, I think they will tell you that extramedullary disease is typically a sign of more aggressive disease. So it's good to hear that they are treating your mother with a 3-drug combination instead of just a 2-drug combination.
One thing I would ask is why they have chosen prednisone instead of dexamethasone. Dex is usually considered to be the more effective of the two steroids typically used to treat myeloma. Perhaps they have selected prednisone, however, because they feel it will be better for someone your mother's age.
How is her health in general? Is she is relatively good health?
Another thing that I would ask your mother's doctors to explain is the choice of subq Velcade instead of infused Velcade.
I know that subq Velcade will typically cause less peripheral neuropathy in patients compared to infused Velcade
But I believe I heard somewhere that, in cases of extramedullary disease, it actually may be better to give Velcade by infusion, because the Velcade will be more likely to penetrate the extramedullary tumors.
Finally, if your mother has not yet gone to a major cancer center that has a number of myeloma specialists, she should. Since your mother is in Oregon, the Oregon Cancer Center at Oregon Health Sciences University may be one option. But she also may want to consider going up to Seattle to Fred Hutchinson, which has several very good myeloma specialists.
I'm very sorry to hear about your mother's situation.
If you ask your mother's doctors about it, I think they will tell you that extramedullary disease is typically a sign of more aggressive disease. So it's good to hear that they are treating your mother with a 3-drug combination instead of just a 2-drug combination.
One thing I would ask is why they have chosen prednisone instead of dexamethasone. Dex is usually considered to be the more effective of the two steroids typically used to treat myeloma. Perhaps they have selected prednisone, however, because they feel it will be better for someone your mother's age.
How is her health in general? Is she is relatively good health?
Another thing that I would ask your mother's doctors to explain is the choice of subq Velcade instead of infused Velcade.
I know that subq Velcade will typically cause less peripheral neuropathy in patients compared to infused Velcade
But I believe I heard somewhere that, in cases of extramedullary disease, it actually may be better to give Velcade by infusion, because the Velcade will be more likely to penetrate the extramedullary tumors.
Finally, if your mother has not yet gone to a major cancer center that has a number of myeloma specialists, she should. Since your mother is in Oregon, the Oregon Cancer Center at Oregon Health Sciences University may be one option. But she also may want to consider going up to Seattle to Fred Hutchinson, which has several very good myeloma specialists.
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TerryH
Re: Mom just diagnosed with extramedullary myeloma
Thank you so much for responding Terri. I have been checking to see if anyone would!
You asked a few questions.
Prednisone: I am not sure of why 100%, but my mother has used it in the past for her Temporal Arteritis, and has reacted well to it. They may have wanted to stay with what was working for her. She is at 60mg on the days she takes it.
Health: As I said in original post, two years ago she had a severe bout of septecemia (Strep Bovis) and has not really been "well" since then. As a matter of fact her oncologist used the term "chronically unwell." We are wondering now if the Extra multiple myeloma and Septecemia are somehow connected to back then; but it is a little like the chicken and the egg. Which came first? I dont know that we will ever have an answer to that question. Since then she has had an angiogram based on abnormal stress test results (all ok) numerous, numerous root canals ( dentist has been wondering why?) and many bladder infections which antibiotics weren't clearing. She has been exhausted for some time now; not tired, exhausted. Then recently on top of the bladder issues was having these episodes of abdominal swelling ( 9 months preg) That is what finally sent her back to her GP.
Velcade subq: When she was originally diagnosed with only multiple myeloma and started her first cycle (almost done) the doc chose subq to be conservative based on her health, plus fewer side effects. The following week the labs that had taken longer came back, and the added Extramedullary came into play. Side note: She had her first bloody nose yesterday and although we know it is a side effect of Velcade, she was worried. Since she is waiting for blood transfusion on Monday we were trying to think of things she can eat to get some energy until then.
Subq vs intrav: I am not sure of the answer, although thru my research it has seemed to show about the same result.
OHSU/Seattle: My mom's doc is originally from Hutchinson. He has only been with our local hospital two years. As soon as he got the latest results of the Extramedullary he was on the phone to Seattle and other doctors for opinions. Seattle was the one who said to up the level of treatment immediately, so they have decided on adding Revlimid starting Tuesday for 3 wks. OHSU has a bit of a rep in Oregon among the older population as a "death" hospital, so my mom fears that.
Being in Saudi during this has become intolerable for me. Although my mom has a wonderful support network with my dad and sister close by; I think we have decided to go back to Oregon when my boys start summer vacation. My mom is adamant about not distrupting them and school. I am hoping she will hold her own until then and we are not waiting too long. It is so hard to know, and her doc is so upbeat and positive about not giving up and fighting this.
I am so glad to be on the forum and welcome any advice or info! This disease is so unknown to the wider community, and even doctors. Adding Extramedullary has put her into an even more unknown category even here on this forum!
Again Terri, thank you for taking the time.
You asked a few questions.
Prednisone: I am not sure of why 100%, but my mother has used it in the past for her Temporal Arteritis, and has reacted well to it. They may have wanted to stay with what was working for her. She is at 60mg on the days she takes it.
Health: As I said in original post, two years ago she had a severe bout of septecemia (Strep Bovis) and has not really been "well" since then. As a matter of fact her oncologist used the term "chronically unwell." We are wondering now if the Extra multiple myeloma and Septecemia are somehow connected to back then; but it is a little like the chicken and the egg. Which came first? I dont know that we will ever have an answer to that question. Since then she has had an angiogram based on abnormal stress test results (all ok) numerous, numerous root canals ( dentist has been wondering why?) and many bladder infections which antibiotics weren't clearing. She has been exhausted for some time now; not tired, exhausted. Then recently on top of the bladder issues was having these episodes of abdominal swelling ( 9 months preg) That is what finally sent her back to her GP.
Velcade subq: When she was originally diagnosed with only multiple myeloma and started her first cycle (almost done) the doc chose subq to be conservative based on her health, plus fewer side effects. The following week the labs that had taken longer came back, and the added Extramedullary came into play. Side note: She had her first bloody nose yesterday and although we know it is a side effect of Velcade, she was worried. Since she is waiting for blood transfusion on Monday we were trying to think of things she can eat to get some energy until then.
Subq vs intrav: I am not sure of the answer, although thru my research it has seemed to show about the same result.
OHSU/Seattle: My mom's doc is originally from Hutchinson. He has only been with our local hospital two years. As soon as he got the latest results of the Extramedullary he was on the phone to Seattle and other doctors for opinions. Seattle was the one who said to up the level of treatment immediately, so they have decided on adding Revlimid starting Tuesday for 3 wks. OHSU has a bit of a rep in Oregon among the older population as a "death" hospital, so my mom fears that.
Being in Saudi during this has become intolerable for me. Although my mom has a wonderful support network with my dad and sister close by; I think we have decided to go back to Oregon when my boys start summer vacation. My mom is adamant about not distrupting them and school. I am hoping she will hold her own until then and we are not waiting too long. It is so hard to know, and her doc is so upbeat and positive about not giving up and fighting this.
I am so glad to be on the forum and welcome any advice or info! This disease is so unknown to the wider community, and even doctors. Adding Extramedullary has put her into an even more unknown category even here on this forum!
Again Terri, thank you for taking the time.
Re: Mom just diagnosed with extramedullary myeloma
Hello Kirsten,
Extramedullary myeloma is generaly thought to be an aggresive form of myeloma. It is usually diagnosed and followed with CT scans, PET scans or MRIs. The concept is that somehow the multiple myeloma had changed or mutated into a form that no longer needs the bone marrow to thrive and so it leave the marrow and invades tissues almost anywhere in the body. Using combinations of chemotherapy drugs is the best approach to extramedually myeloma. This form of the disease can progress rapidly. It is more often seen in patients who have had myeloma for several years and received many different treatments rather than early in the course. Perhaps this is more corrected termed myeloma with plasmacytomas than extramedullary disease.
If your mother will allow you to .......you can help your mother alot by becoming informed about myeloma. It is not uncommon for patients to have a family member, spouse or friend assume the expert role. The practive of medicine is so complex that it is much easier and more comfortable navigating the course of a disease when someone in the family becomes knowledgeable.
We would be happy to see you mother here but I would recommend that she consider seeing the physicians at OHSU the distance to Seattle is signifcant. Two new physicians have joined OHSU recently who are focusing their careers in myeloma ..... Emma Scott MD and Steve Smith MD. I know both of them and recomend them. Your might have a look at their information on he OHSU website.
I wish your mother the best of luck with this difficult disease.
Extramedullary myeloma is generaly thought to be an aggresive form of myeloma. It is usually diagnosed and followed with CT scans, PET scans or MRIs. The concept is that somehow the multiple myeloma had changed or mutated into a form that no longer needs the bone marrow to thrive and so it leave the marrow and invades tissues almost anywhere in the body. Using combinations of chemotherapy drugs is the best approach to extramedually myeloma. This form of the disease can progress rapidly. It is more often seen in patients who have had myeloma for several years and received many different treatments rather than early in the course. Perhaps this is more corrected termed myeloma with plasmacytomas than extramedullary disease.
If your mother will allow you to .......you can help your mother alot by becoming informed about myeloma. It is not uncommon for patients to have a family member, spouse or friend assume the expert role. The practive of medicine is so complex that it is much easier and more comfortable navigating the course of a disease when someone in the family becomes knowledgeable.
We would be happy to see you mother here but I would recommend that she consider seeing the physicians at OHSU the distance to Seattle is signifcant. Two new physicians have joined OHSU recently who are focusing their careers in myeloma ..... Emma Scott MD and Steve Smith MD. I know both of them and recomend them. Your might have a look at their information on he OHSU website.
I wish your mother the best of luck with this difficult disease.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Mom just diagnosed with extramedullary myeloma
Thank you so much for taking the time to reply Dr Libby.
I had my sister send iphone pics of my mother's results yesterday evening and:
Left Iliac Crest Core Biopsy says
Plasma cell myeloma with plasmablastic features involving a hypercellular bone marrow (80% neoplastic cells in an 80% cellular marrow) (see comment)
Immnunophenotype: CD38, CD 56, CD 138 and cytoplasmic Kappa positive
Ki-67 positive in 60% of neoplastic plasma cells
Epstein-Barr virus (EBER) in situ hybridization - negative
Reduced background trilineage hematopoiesis
Comment: The above diagnosis incorporates results from concurrent flow cytometry (Legacy Diagnostic Services, BG-13-72) and preliminary FISH studies. The neoplastic cells show plasmablastic morphologic features , similar to those seen in the concurrent lymph node biopsy (GS13-1328). The tumor cell morphology and clinical presentation certainly raise the possibility of plasmablastic lymphoma, however the immunophenotype , lack of EBV positivity, monoclonal protein spike and presence of clonal t (14;16) IgH-cMAF and hyperdiploidy by FISH, all firmaly support of the diagnosis of plasma cell myeloma with plasmablastic features. Correlation of these with the complete flow cytometry , FISH and routine cytogenetic studies is recommended . The above findings were discussed with Dr. Herschel Wallen on 2/14/2013
My mom is currently in the clinic getting a blood transfusion after a hemo result of 7.4 yesterday, down from 7.9 on Thursday.
I really want to become an expert and am reading everything I can find. It just sounds, so much of the time, like a foreign language!
I am going to pass on the names of the OHSU doctors you mentioned and see what my parents want to do. Dr Wallen has been wonderful, but we also know how serious this is, and want the best help we can find. Still looking, but haven't found the magic pill yet.
I am very grateful for your reply. Thank you!
Regards, Kirsten
I had my sister send iphone pics of my mother's results yesterday evening and:
Left Iliac Crest Core Biopsy says
Plasma cell myeloma with plasmablastic features involving a hypercellular bone marrow (80% neoplastic cells in an 80% cellular marrow) (see comment)
Immnunophenotype: CD38, CD 56, CD 138 and cytoplasmic Kappa positive
Ki-67 positive in 60% of neoplastic plasma cells
Epstein-Barr virus (EBER) in situ hybridization - negative
Reduced background trilineage hematopoiesis
Comment: The above diagnosis incorporates results from concurrent flow cytometry (Legacy Diagnostic Services, BG-13-72) and preliminary FISH studies. The neoplastic cells show plasmablastic morphologic features , similar to those seen in the concurrent lymph node biopsy (GS13-1328). The tumor cell morphology and clinical presentation certainly raise the possibility of plasmablastic lymphoma, however the immunophenotype , lack of EBV positivity, monoclonal protein spike and presence of clonal t (14;16) IgH-cMAF and hyperdiploidy by FISH, all firmaly support of the diagnosis of plasma cell myeloma with plasmablastic features. Correlation of these with the complete flow cytometry , FISH and routine cytogenetic studies is recommended . The above findings were discussed with Dr. Herschel Wallen on 2/14/2013
My mom is currently in the clinic getting a blood transfusion after a hemo result of 7.4 yesterday, down from 7.9 on Thursday.
I really want to become an expert and am reading everything I can find. It just sounds, so much of the time, like a foreign language!
I am going to pass on the names of the OHSU doctors you mentioned and see what my parents want to do. Dr Wallen has been wonderful, but we also know how serious this is, and want the best help we can find. Still looking, but haven't found the magic pill yet.
I am very grateful for your reply. Thank you!
Regards, Kirsten
Re: Mom just diagnosed with extramedullary myeloma
Hi,
I live in Portland and see Dr. Emma Scott at OHSU. She is absolutely wonderful both in her knowledge and expertise of Myeloma and her bedside manner and her nurse assistant are absolute gems. They spend alot of time with you and are always available to answer questions. I only have MGUS but also many other health problems and all my doctors are at OHSU. I am a retired nurse and trust no other place in matters of my health.
Your mother and your family are in my thoughts and prayers!
Toni in Beaverton, OR
I live in Portland and see Dr. Emma Scott at OHSU. She is absolutely wonderful both in her knowledge and expertise of Myeloma and her bedside manner and her nurse assistant are absolute gems. They spend alot of time with you and are always available to answer questions. I only have MGUS but also many other health problems and all my doctors are at OHSU. I am a retired nurse and trust no other place in matters of my health.
Your mother and your family are in my thoughts and prayers!
Toni in Beaverton, OR
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toni
Re: Mom just diagnosed with extramedullary myeloma
Thank you Toni.
I am going to pass the OHSU information on to my parents and see what they want to do. They have been very happy in Corvallis, but I am trying to explore every option.
Good luck and positive thoughts to you as well!
Kirsten
I am going to pass the OHSU information on to my parents and see what they want to do. They have been very happy in Corvallis, but I am trying to explore every option.
Good luck and positive thoughts to you as well!
Kirsten
Re: Mom just diagnosed with extramedullary myeloma
Good morning everyone. Update to my previous post. My moms multiple myeloma has relapsed and she starts carfilzomib this morning. Scared beyond words! The safety of this drug is still so unknown. I am afraid though that it might be this or no other option to help her. Wish us luck please!!
Re: Mom just diagnosed with extramedullary myeloma
Hi - I just want to let you know that my husband was given the Carfilzomib for his first line therapy and for him it was highly effective in bringing his advanced stage of multiple myeloma (with multiple lesions in skull, legs, hips and thighs) into remission after 6 months of combination with Dex and Revlimid. He has had however, significant lasting side effects that seemed to have started around the time that the cancer got into initial control as he continued on the treatment for 2 more months per the protocol at the time. What I do know is that despite having so many quality of life issues now with mobility and cognition issues, we wouldn't want to do things differently, except maybe stop induction therapy once he had gotten into remission but by staying on we may have helped longer term outlook -- so who knows. What I do know is that the drug was released last July 2012 and has had success for refractory as well as first line use with less side effects than Velcade and my hubby is apparently a rare exception, as I understand most patients do very well even after the induction with this new drug and have met several older patients at the NIH also in their 60's like your mom who have been on this drug so I would still recommend it if I had a friend who recently got a multiple myeloma diagnosis.
I hope that helps you feel a bit more comfortable this "new" drug. I'm not a physician and can only speak from our family's real life experience in that it saved my husband from a very dire outlook at the time.
KP
I hope that helps you feel a bit more comfortable this "new" drug. I'm not a physician and can only speak from our family's real life experience in that it saved my husband from a very dire outlook at the time.
KP
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Catalystmom - Name: Kpatel
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 49
Re: Mom just diagnosed with extramedullary myeloma
Thank you so much for sharing! My mom tried the first round carfilzomib/dex/Rev last Mon and Tues. Tuesday night temp 102.2, ER, hospital four days, acute tumor lysis, discharged after platelets and blood transfusion on Sunday. Monday platelets at 10. Tuesday picc line inserted, platelets again, then round two of Carfilzomib. Onc doc seems to think this is all "normal" in our "new normal" world. Scary!
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