Hi everyone,
I' finished up eight cycles of a Phase 3 clinical trial in July, in which I got Velcade, Dexamethasone and Revlimid. I also had a stem cell harvest during that time although my doctor doesn't feel that I need to have a transplant at this time. I'm doing very well; my blood work is all within the normal range, I have not had any serious side effects from the medication, I don't have any genetic abnormalities, my bones seem to be slowly improving or at least are not developing any new lesions, etc.
I had a bone marrow biopsy in July and the results showed <1% cancer cells (the first one I had, back in December before I started treatment, showed about 15%.) My oncologist says that there's pretty much no evidence of disease in my body at this time.
Now I'm in the maintenance part of the trial which consists of the dexamethasone (40 mg once a week) and Revlimid (25 mg on a 21 days on/7 days off schedule) Today at my monthly checkup I was told that the trial requires a bone marrow biopsy about every two cycles, or every eight weeks.
I know that the biopsy is the best way to check for the presence of myeloma, but I really find them quite stressful and uncomfortable, despite the fact that the nurse practitioner who does them is very good and very nice, and gives me lots of Lidocaine--this dulls the pain of the needles going in, but it's the sensation of the needles drawing out the blood & bone that I find very uncomfortable, and which the painkillers don't seem to really work against.
Is anyone else on a similar schedule of biopsies? Does this seem excessive? Of course I want to do whatever I need to do to keep on top of this disease, but at the same time as my doctor has already said that my myeloma is "low-risk" I am wondering if I could get away with fewer of them if I weren't in the trial. Of course, if I leave the trial I will have to make sure I can still get the Revlimid from my own prescription drug plan. Maybe I should just accept that this is my new reality and deal with it. Are there any other medications I could take prior to the biopsy that would make the experience less uncomfortable? I would love to hear anyone's thoughts or experiences.
Karen
Forums
Re: Question re: frequency of bone marrow biopsies
I only have a biopsy ever year to year and a half.
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Question re: frequency of bone marrow biopsies
Hi Karen-
As multiple myeloma affects your life, I recommend that you get the biopsies whenever suggested. Dom gets upset with me that I push for them.... I realize (via Dominic) that this is uncomfortable, but toughen up.... I'm always asking for blood work and urine tests, too.
Don't want to sound "cold", but as a caregiver, I'm a stickler on NUMBERS.
Hang in there, baby.... Best wishes.
As multiple myeloma affects your life, I recommend that you get the biopsies whenever suggested. Dom gets upset with me that I push for them.... I realize (via Dominic) that this is uncomfortable, but toughen up.... I'm always asking for blood work and urine tests, too.
Don't want to sound "cold", but as a caregiver, I'm a stickler on NUMBERS.
Hang in there, baby.... Best wishes.
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Nanette - Name: Nanette "Deaux"
- Who do you know with myeloma?: My dear husband, Dominic
- When were you/they diagnosed?: Spring of 2008
- Age at diagnosis: 62
Re: Question re: frequency of bone marrow biopsies
Karren,
It is the drug trial that requires them so frequently. I have one about every year or two since my transplant. 2yrs ago. I have actually not heard of any being done so frequently. Gayle
It is the drug trial that requires them so frequently. I have one about every year or two since my transplant. 2yrs ago. I have actually not heard of any being done so frequently. Gayle
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Gayle Homan Masserant
Re: Question re: frequency of bone marrow biopsies
Hi Karen,
After having a horrible biopsy on 4/6/2011 and then was told that the Oncologist botched it, I then had to go through a second one. Had no problems agreeing to the second biopsy on 5/3/2011 but I can assure you that I was slightly sedated and didn't feel a thing. They can do all of the biopsies they want as long as I am slightly sedated. All you have to do is tell them what you want and will not do. It your body and you don't need to go through that much pain needlessly. Yes, stay with the program and have as many biopsies as requested but on your terms. Best of luck.
Rita, Fidalgo Island, WA
SMM 5/20/2011
After having a horrible biopsy on 4/6/2011 and then was told that the Oncologist botched it, I then had to go through a second one. Had no problems agreeing to the second biopsy on 5/3/2011 but I can assure you that I was slightly sedated and didn't feel a thing. They can do all of the biopsies they want as long as I am slightly sedated. All you have to do is tell them what you want and will not do. It your body and you don't need to go through that much pain needlessly. Yes, stay with the program and have as many biopsies as requested but on your terms. Best of luck.
Rita, Fidalgo Island, WA
SMM 5/20/2011
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rmbill@comcast.net
Re: Question re: frequency of bone marrow biopsies
Thanks all,
Rita, that's pretty much what a friend of mine, who is a doctor (formerly in oncology, now internal medicine, and actually also has CLL and just had an allogenic transplant) told me. When he had to have a biopsy he got many more, stronger pain meds than I did (I've only received Lidocaine for the two I've had so far), plus anti-anxiety meds and I think he was also somewhat sedated too.
The nurse practitioner who does the biopsies in my group told me before the first one that they used to use sedation but don't routinely any longer. I'm not sure I'd need that, but the anti-anxiety drugs might definitely be a good idea. And any other painkillers they might be able to throw at me!
Karen
Rita, that's pretty much what a friend of mine, who is a doctor (formerly in oncology, now internal medicine, and actually also has CLL and just had an allogenic transplant) told me. When he had to have a biopsy he got many more, stronger pain meds than I did (I've only received Lidocaine for the two I've had so far), plus anti-anxiety meds and I think he was also somewhat sedated too.
The nurse practitioner who does the biopsies in my group told me before the first one that they used to use sedation but don't routinely any longer. I'm not sure I'd need that, but the anti-anxiety drugs might definitely be a good idea. And any other painkillers they might be able to throw at me!
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Question re: frequency of bone marrow biopsies
I has one in 11/09 all i felt was pressure no pain since then I have had 3 bone marrow mri's - painless gives a ball park percentage of bone marrow involvement
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mlweezieclark@yahoo.com2
Re: Question re: frequency of bone marrow biopsies
Hi Karen,
In terms of frequency of biopsies, I only know that clinical trials have them as mandatory in the beginning and end of chemo or trials. As they can provide additional data about the therapeutic efficacy of the chemo regimens. Otherwise I suspect it is a matter of that hem/onc's opinion/philosophy. As I am sure you know they need them to determine cytogenetics and the ratio of normal cells to cancerous ones as well along with what is commonly called time to progression.
I do think technique matters. It is typically best to request the indiviidual who does the most BM apirates/bioposies. Personally, I also think a male is better particularly a tall one since pushing through the bone is a matter of strength and males tend to have more than females and pushing through with rapid force also requires leverage and in that regard height is an advantage due to additional force.
I was not sedated they gave 2 percocets and lorazepam for anti-anxiety. I felt pressure and it became unbearable at one point which is when the bone was being penetrated, however because the MD used rapid force the pain of penetration lasted only 30 seconds just as I began to believe I could not bear it any longer. Then when he did the aspiration, which is usually the part they tell you hurts, as withdrawing the marrow creates a volume vaccum in the marrow, it felt like a long hard pinch on the tender underside of your upper arm, akin to how some mothers due in church when kiddies do not stop squirming.
. That was followed by the biopsy which was painless.
The part of the procedure I think is needlessly painful is the lidocaine injection. I was injected numerous times since, they had difficulty finding my bony prominence as my pelvis is very narrow. So, 2 additional MD's were called in to ascertain the right spot which meant in terms of the manual probing for the bony prominence, the lidocaine wore off and had to be injected again.
The physician who ended up performing the procedure was quick and fast when he pushed in the lidocaine also which diminishes the length of the sting, as opposed to a slow push since the lidocaine stings the entire time it is going into the muscle.
HOWEVER, lidocaine sting can be completely eliminated simply by using buffered lidocaine!
It is the pH of the lidocaine which is more acidic than muscle tissue that causes the sting. Also buffered lidocaine is as cheap. Many doctors don't even know there is such a thing typically.
I made certain to tell the Medical Director, who was one of the 2 additional consults for my procedure, that the BM aspiration is bad enough so why do we needlessly get unbuffered lidocaine, when buffered is available and stingless.
He agreed with me.
In terms of frequency of biopsies, I only know that clinical trials have them as mandatory in the beginning and end of chemo or trials. As they can provide additional data about the therapeutic efficacy of the chemo regimens. Otherwise I suspect it is a matter of that hem/onc's opinion/philosophy. As I am sure you know they need them to determine cytogenetics and the ratio of normal cells to cancerous ones as well along with what is commonly called time to progression.
I do think technique matters. It is typically best to request the indiviidual who does the most BM apirates/bioposies. Personally, I also think a male is better particularly a tall one since pushing through the bone is a matter of strength and males tend to have more than females and pushing through with rapid force also requires leverage and in that regard height is an advantage due to additional force.
I was not sedated they gave 2 percocets and lorazepam for anti-anxiety. I felt pressure and it became unbearable at one point which is when the bone was being penetrated, however because the MD used rapid force the pain of penetration lasted only 30 seconds just as I began to believe I could not bear it any longer. Then when he did the aspiration, which is usually the part they tell you hurts, as withdrawing the marrow creates a volume vaccum in the marrow, it felt like a long hard pinch on the tender underside of your upper arm, akin to how some mothers due in church when kiddies do not stop squirming.
. That was followed by the biopsy which was painless.The part of the procedure I think is needlessly painful is the lidocaine injection. I was injected numerous times since, they had difficulty finding my bony prominence as my pelvis is very narrow. So, 2 additional MD's were called in to ascertain the right spot which meant in terms of the manual probing for the bony prominence, the lidocaine wore off and had to be injected again.
The physician who ended up performing the procedure was quick and fast when he pushed in the lidocaine also which diminishes the length of the sting, as opposed to a slow push since the lidocaine stings the entire time it is going into the muscle.
HOWEVER, lidocaine sting can be completely eliminated simply by using buffered lidocaine!
It is the pH of the lidocaine which is more acidic than muscle tissue that causes the sting. Also buffered lidocaine is as cheap. Many doctors don't even know there is such a thing typically.
I made certain to tell the Medical Director, who was one of the 2 additional consults for my procedure, that the BM aspiration is bad enough so why do we needlessly get unbuffered lidocaine, when buffered is available and stingless.
He agreed with me.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Question re: frequency of bone marrow biopsies
HI Susie,
I was diagnosed over 2 years ago. I've gone through the same drug regiment as you, plus 2 VDPACE sessions and 2 SCT's. I'm going to have my 3rd bone marrow biopsy this month.
I'm no oncologist and I haven't even played one on TV, but every 8 weeks sounds like a lot!! Wow.
I have my mspike and IGG checked through regular blood tests every 2 weeks and that gives them a very good idea of whether or not the drugs are effective.
If I were you, I'd get a second opinion.
I was diagnosed over 2 years ago. I've gone through the same drug regiment as you, plus 2 VDPACE sessions and 2 SCT's. I'm going to have my 3rd bone marrow biopsy this month.
I'm no oncologist and I haven't even played one on TV, but every 8 weeks sounds like a lot!! Wow.
I have my mspike and IGG checked through regular blood tests every 2 weeks and that gives them a very good idea of whether or not the drugs are effective.
If I were you, I'd get a second opinion.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Question re: frequency of bone marrow biopsies
Hi Stan,
Perhaps you inadvertently wrote my name. I have not started any regimen yet. I am newly diagnosed and just had bone marrow aspirate/biopsy.
Perhaps you inadvertently wrote my name. I have not started any regimen yet. I am newly diagnosed and just had bone marrow aspirate/biopsy.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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