Hummingbird,
You might want to check your insurance. If it covers a bone marrow biopsy with sedation (and I believe that most do), then you can tell your oncologist that yes, you do indeed have a choice.
Many people don't have a problem with bone marrow biopsies done in the office under locals. However, many of us do. I'm one that does, and I'm willing to pay the extra co-pay the insurance requires for this procedure under sedation/anesthesia.
So check it out. You might be surprised at what choices you actually do have here.
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Indolent vs aggressive relapse: what's the difference?
Hi all,
My husband is recovering from sepsis and has put his treatment on hold for now. Immediately prior to the presentation of sepsis, he began a new treatment regimen for his relapsed myeloma (1st relapse), and had 2 back-to-back Kyprolis infusions. Next day, fever / delirium / shakes. We are now 5 weeks out and he is coming home tomorrow from rehab.
His relapse appeared "indolent" for many months as his M-spike was growing at a glacial pace, and was only about 1.13 g/dL (11.3 g/L) when the doctor did a bone marrow biopsy in an effort to figure out his dropping reds and platelets. Bone marrow reflected much higher burden than was showing in M-spike, with a new tp53 deletion (he already has 1q21 amplification, 13q deletion, myc disruption).
We have a meeting next week with our myeloma specialist to come up with a plan. Does anyone have any thoughts on questions I should ask or things to think about?
(By the way, we were able to hold off treatment while he recovered from sepsis because the 2 Kyprolis infusions punched back the M-spike significantly, his bone marrow appears to be recovering as his reds and platelets have recovered this week).
Thank you!
Laurie
My husband is recovering from sepsis and has put his treatment on hold for now. Immediately prior to the presentation of sepsis, he began a new treatment regimen for his relapsed myeloma (1st relapse), and had 2 back-to-back Kyprolis infusions. Next day, fever / delirium / shakes. We are now 5 weeks out and he is coming home tomorrow from rehab.
His relapse appeared "indolent" for many months as his M-spike was growing at a glacial pace, and was only about 1.13 g/dL (11.3 g/L) when the doctor did a bone marrow biopsy in an effort to figure out his dropping reds and platelets. Bone marrow reflected much higher burden than was showing in M-spike, with a new tp53 deletion (he already has 1q21 amplification, 13q deletion, myc disruption).
We have a meeting next week with our myeloma specialist to come up with a plan. Does anyone have any thoughts on questions I should ask or things to think about?
(By the way, we were able to hold off treatment while he recovered from sepsis because the 2 Kyprolis infusions punched back the M-spike significantly, his bone marrow appears to be recovering as his reds and platelets have recovered this week).
Thank you!
Laurie
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Indolent vs aggressive relapse: what's the difference?
Dianaiad,
Although some people with multiple myeloma have imaging tests done annually. I haven't had them since my diagnosis in May 2014. If one can have plasmacytomas without having any pain, it would seem the doctors should do some sort of imaging on a regular basis. It makes me wonder if I have a bunch of plasmacytomas and I don't even know it.
Although some people with multiple myeloma have imaging tests done annually. I haven't had them since my diagnosis in May 2014. If one can have plasmacytomas without having any pain, it would seem the doctors should do some sort of imaging on a regular basis. It makes me wonder if I have a bunch of plasmacytomas and I don't even know it.
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Janet1520
Re: Indolent vs aggressive relapse: what's the difference?
Well, I was in the same boat; all my blood tests came back great; complete remission. in fact, they are still great.
No M-spike, light chains are in good shape, the only problems I have are treatment-related; low ANC, low potassium, stuff like that.
So I didn't have any imaging tests either, since my first stem cell transplant in October of 2013. In fact, if it weren't for that stupid cold /whatever I caught just before my son's wedding that resulted in a chest X-ray, we still might not know anything.
Well, I take that back. I had noticed a little 'ding' in the back of my head, so I would probably have told my oncologist about that eventually.
The thing is, he noticed the chest X-ray had a "something" on my rib that turned out to be an 'anomaly,' and not a lytic lesion. My ribs were sore, but that was because of the bronchitis. He ordered the MRIs and the CT scans that showed the plasmacytomas in my head, and that's when everybody went postal on me, and that's why I'm getting a second transplant within the next few weeks.
So, yeah, a bone density test or something like that probably wouldn't hurt anything but your pocket book. I hope your copays aren't too horrible. Talking to your doc about this would be a very good idea.
No M-spike, light chains are in good shape, the only problems I have are treatment-related; low ANC, low potassium, stuff like that.
So I didn't have any imaging tests either, since my first stem cell transplant in October of 2013. In fact, if it weren't for that stupid cold /whatever I caught just before my son's wedding that resulted in a chest X-ray, we still might not know anything.
Well, I take that back. I had noticed a little 'ding' in the back of my head, so I would probably have told my oncologist about that eventually.
The thing is, he noticed the chest X-ray had a "something" on my rib that turned out to be an 'anomaly,' and not a lytic lesion. My ribs were sore, but that was because of the bronchitis. He ordered the MRIs and the CT scans that showed the plasmacytomas in my head, and that's when everybody went postal on me, and that's why I'm getting a second transplant within the next few weeks.
So, yeah, a bone density test or something like that probably wouldn't hurt anything but your pocket book. I hope your copays aren't too horrible. Talking to your doc about this would be a very good idea.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Indolent vs aggressive relapse: what's the difference?
Dianaiad,
I just want to tell you how much I am learning from your posts! We are the same age and that makes your experiences more relevant to me.
I'm only 7 weeks into this unhappy adventure, but your frankness and expressive way of writing really help me to understand what might be coming my way.
Thank you so much!
I just want to tell you how much I am learning from your posts! We are the same age and that makes your experiences more relevant to me.
I'm only 7 weeks into this unhappy adventure, but your frankness and expressive way of writing really help me to understand what might be coming my way.
Thank you so much!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Indolent vs aggressive relapse: what's the difference?
I am learning what appears as "indolent" still warrants close attention and treatment.
My indolent relapse has been progressing slowly for about a year. Since the spring, my M-spike started climbing and is now up to 40 g/L (4.0 g/dL). I've felt shortness of breath, and heaviness in my lungs all summer and it kept getting explained as my asthma. I even went to a pulmonary specialist who changed my inhaler and told my my asthma was well controlled.
My family doctor doing due diligence ordered a chest x-ray which showed a shadow, and after a repeat x-ray, the nodule is still there (2 cm). Sent the report to my myeloma doc. She said it could be a plasmacytoma in the lung and I'm going to get another scan.
I start Kyprolis next week! We really can't let our guard down with this disease. Even those of us with slow growing, or indolent, relapse must be diligent.
My indolent relapse has been progressing slowly for about a year. Since the spring, my M-spike started climbing and is now up to 40 g/L (4.0 g/dL). I've felt shortness of breath, and heaviness in my lungs all summer and it kept getting explained as my asthma. I even went to a pulmonary specialist who changed my inhaler and told my my asthma was well controlled.
My family doctor doing due diligence ordered a chest x-ray which showed a shadow, and after a repeat x-ray, the nodule is still there (2 cm). Sent the report to my myeloma doc. She said it could be a plasmacytoma in the lung and I'm going to get another scan.
I start Kyprolis next week! We really can't let our guard down with this disease. Even those of us with slow growing, or indolent, relapse must be diligent.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Indolent vs aggressive relapse: what's the difference?
Yeah, I'm in the same boat as others who have posted. My creeping IgA and free light chain levels have begun to accelerate. However, no M-spike, no CRAB, and all other blood test results within range. My oncologist wanted to start on Revlimid, but my specialist overruled him and wanted to wait. But he did say if things start taking off, we'll have to reconsider.
Just got some blood work yesterday and my IgA and free light chain levels continue in an (unfortunately) upward direction. It's been about 11 months since I stopped my initial treatment with Revlimid, Velcade, and dexamethasone (RVd). Which I had great success with; my numbers were back in normal range after my second cycle. Except it left me with neuropathy in my feet. So, specialist says he will try something other than Velcade next time.
Specialist thinks I'm having an indolent relapse right now, but he says that could change. Boy, I hate the bi-monthly stress of the blood tests. Ugh.
Just got some blood work yesterday and my IgA and free light chain levels continue in an (unfortunately) upward direction. It's been about 11 months since I stopped my initial treatment with Revlimid, Velcade, and dexamethasone (RVd). Which I had great success with; my numbers were back in normal range after my second cycle. Except it left me with neuropathy in my feet. So, specialist says he will try something other than Velcade next time.
Specialist thinks I'm having an indolent relapse right now, but he says that could change. Boy, I hate the bi-monthly stress of the blood tests. Ugh.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
Re: Indolent vs aggressive relapse: what's the difference?
Small update to share with the group. The nodule in my lung is a "ground glass nodule," whatever that is, but not related to myeloma, and nothing to worry about according to my pulmonary doctor.
More testing revealed I have fluid around my heart though. I have no idea what it is from and am waiting for my consult with cardiology. They said probably had some infection, which is a probable explanation when you have myeloma!
More testing revealed I have fluid around my heart though. I have no idea what it is from and am waiting for my consult with cardiology. They said probably had some infection, which is a probable explanation when you have myeloma!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Indolent vs aggressive relapse: what's the difference?
I am completely nonsecretory and also have reverted to an MGUS-like state. Crazy combination, but I am still on my first line of treatment, and in the six years since my transplant, I have not had so much as a cold or fever, even runny nose. My body is responding well. With all these new and different conditions that are possible, I'm glad I see my specialist frequently. He says that, in my case, bone marrow biopsies are the only way to know if the myeloma is coming back.
Maybe I got real lucky and I'll hold this status until they are closer to a cure. I've been very lucky so far.
Maybe I got real lucky and I'll hold this status until they are closer to a cure. I've been very lucky so far.
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Hugh Southard
39 posts
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