I’ve just about finished my first cycle of a cyclophosphamide, Velcade, and dexamethasone (CyBorD) treatment and will get my first blood test later this week on the status of my current M spike level. It was 40 g/L (4.0 g/dL) when I first started treatment. As you can imagine, it is an anxious time for me.
Until last Friday, three days ago, everything was going as well as I could expect, except for some minor bowel issues. However, early on Friday morning I suffered a large drop in blood pressure. I experienced a feeling of pressure in both my eyes, and I literally saw stars as my vision blacked out. I do not believe I actually fainted; I only came close. My blood pressure had dropped to 65/40.
As it was 6 a.m. too early to wake up my hematologist, I decided to call the "hematologist on call" at the hospital where I am being treated for my myeloma. I wanted to find out what I should do. I was concerned that my blood pressure falloff was either being caused by Velcade (it is a listed side effect) or something else.
So I ended up in the ER department where I had gads of blood tests and history taken. The test results showed nothing remarkable except for one item. The measurement that was slightly out of bounds was something called troponin T. According to the discharge report given to me, my measured level of troponin was an “abnormal level consistent with acute or chronic myocardial injury.” Ouch!
So I also had a CT scan of lungs performed to see if there were any blood clots. Since there were none, I was sent home with the diagnosis of hypotension. (Well, I knew that when I went to hospital.)
I’ve had repeated early morning episodes of this hypotension everyday since Friday. These episodes are episodic and lessen in a few hours. They have a postural component to it. I am managing by lying on floor (or bed) and raising my feet. This helps a lot, but it does not get rid of the whole effect. I am also trying to be very careful not to hit my head if I faint.
I am wondering if anyone else has had episodic low blood pressure events when being treated with Velcade. Was there any remedy, did a change of dosage help, etc.? Does time heal all, including low blood pressure?
Thanks,
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Dizziness & low blood pressure while on Velcade
Wobbles,
You might want to read the Velcade prescribing information, which covers both hypotension and dizziness:
5.2 Hypotension
The incidence of hypotension (postural, orthostatic, and hypotension NOS) was 8%. These events are observed throughout therapy. Caution should be used when treating patients with a history of syncope, patients receiving medications known to be associated with hypotension, and patients who are dehydrated. Management of orthostatic / postural hypotension may include adjustment of antihypertensive medications, hydration, and administration of mineralocorticoids and/or sympathomimetics
You might want to read the Velcade prescribing information, which covers both hypotension and dizziness:
5.2 Hypotension
The incidence of hypotension (postural, orthostatic, and hypotension NOS) was 8%. These events are observed throughout therapy. Caution should be used when treating patients with a history of syncope, patients receiving medications known to be associated with hypotension, and patients who are dehydrated. Management of orthostatic / postural hypotension may include adjustment of antihypertensive medications, hydration, and administration of mineralocorticoids and/or sympathomimetics
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dizziness & low blood pressure while on Velcade
Hi Wobbles,
Sorry to hear about the fainting / dizziness issue you've been experiencing.
Another forum member, Eric Hofacket, has described a similar, but more extreme, experience that he had while he was taking Velcade. He describes it at length in this posting.
Although it is natural to think that this sort of issue is heart-related, based on what Eric has written, I think the explanation is more complex. Specifically, the cause of the problem may be the effect Velcade has on nerve function. The same thing that Velcade does to nerves that results in peripheral neuropathy also may be what causes it to affect nerves in the leg muscles, messing up the way the body regulates blood pressure.
Sorry to hear about the fainting / dizziness issue you've been experiencing.
Another forum member, Eric Hofacket, has described a similar, but more extreme, experience that he had while he was taking Velcade. He describes it at length in this posting.
Although it is natural to think that this sort of issue is heart-related, based on what Eric has written, I think the explanation is more complex. Specifically, the cause of the problem may be the effect Velcade has on nerve function. The same thing that Velcade does to nerves that results in peripheral neuropathy also may be what causes it to affect nerves in the leg muscles, messing up the way the body regulates blood pressure.
Re: Dizziness & low blood pressure while on Velcade
Many thanks to both of you. The information that you provided is most helpful. I have read both articles. They were eye openers.
I will monitor my situation and see how it evolves.
And I agree with you, Terry; I am mostly sure that the sort of dizziness that I have been experiencing is related to my nervous system, not a heart condition.
Although I believe my high troponin T measurement is an outlier of some sort, I’ll still get my hematologist's opinion of what, if anything, should be done.
Joe
I will monitor my situation and see how it evolves.
And I agree with you, Terry; I am mostly sure that the sort of dizziness that I have been experiencing is related to my nervous system, not a heart condition.
Although I believe my high troponin T measurement is an outlier of some sort, I’ll still get my hematologist's opinion of what, if anything, should be done.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Dizziness & low blood pressure while on Velcade
Don't want to worry you and I'm sure it's not an issue, but it might be worth just double checking that there is no amyloidosis involved (raised cardiac markers and postural hypotension would raise suspicion).
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
Re: Dizziness & low blood pressure while on Velcade
My dad was fairly dizzy for about 36 hours about a week ago while taking cyclophosphamide and dexamethasone. Velcade (bortezomib) was stopped about 5 weeks ago.
Instead of taking cyclophosphamide and dexamethasone once a week, he is now taking a half dose of both in the beginning of the week and half dose at the end of the week to cut down on his side effects. This will likely go on until September / October, when he goes on a chemo-free period now that he is in complete response.
Instead of taking cyclophosphamide and dexamethasone once a week, he is now taking a half dose of both in the beginning of the week and half dose at the end of the week to cut down on his side effects. This will likely go on until September / October, when he goes on a chemo-free period now that he is in complete response.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Dizziness & low blood pressure while on Velcade
Thanks for that heads-up comment, David. I will ask my hematologist what I should do about the high troponin T measurement.
When I read the link that Multibilly provided, I noticed that they were also suggesting the possibility of dose reduction as a means to limit the dizziness associated with Velcade, exactly as Little Monkey’s said her dad is doing with his dexamethasone dosage.
I did a little experiment that was suggested by Eric, who posted in in the link Terry provided. Eric suggested that I measure my blood pressure while lying prone, followed by sitting up, and then standing up. I decided to do the experiment as I just awoke for the day. I also waited 2 minutes before doing next measurement. Here are the the results:
1. lying down - BP = 92/45 mm Hg with heart rate of 56 beats per minute,
2. sitting up - BP = 67/44 mm Hg with heart rate of 72 beats per minute, and
3. standing up - BP = 58/37 mm Hg with heart rate of 72 beats per minute.
The drop in pressure is very noticeable. Again, I nearly fainted. Fortunately, the postural dependency of my dizziness diminishes as my day goes on.
Thanks again for all your comments.
Joe
When I read the link that Multibilly provided, I noticed that they were also suggesting the possibility of dose reduction as a means to limit the dizziness associated with Velcade, exactly as Little Monkey’s said her dad is doing with his dexamethasone dosage.
I did a little experiment that was suggested by Eric, who posted in in the link Terry provided. Eric suggested that I measure my blood pressure while lying prone, followed by sitting up, and then standing up. I decided to do the experiment as I just awoke for the day. I also waited 2 minutes before doing next measurement. Here are the the results:
1. lying down - BP = 92/45 mm Hg with heart rate of 56 beats per minute,
2. sitting up - BP = 67/44 mm Hg with heart rate of 72 beats per minute, and
3. standing up - BP = 58/37 mm Hg with heart rate of 72 beats per minute.
The drop in pressure is very noticeable. Again, I nearly fainted. Fortunately, the postural dependency of my dizziness diminishes as my day goes on.
Thanks again for all your comments.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Dizziness & low blood pressure while on Velcade
A quick follow-up ... I just received blood test results on the effectiveness of my cyclophosphamide, Velcade, and dexamethasone (CyBorD) treatment. I have just finished the first cycle and I was not sure how well it would work.
The good news is that my monoclonal protein level decreased from 40 g/L to 13 g/L (4.0 g/dL to 1.3 g/dL), which is where it was a year ago. I take this to be a very good start.
Yahoo!
Tomorrow I go for a red blood cell transfusion because my hemoglobin is at 92 g/L. I have not had a hemoglobin level this high in 8 years. My numbers are usually around 75 g/L three weeks after a transfusion. (I've been anemic almost 10 years, way before I was diagnosed with myeloma.)
Double Yahoo!
Joe
The good news is that my monoclonal protein level decreased from 40 g/L to 13 g/L (4.0 g/dL to 1.3 g/dL), which is where it was a year ago. I take this to be a very good start.
Yahoo!
Tomorrow I go for a red blood cell transfusion because my hemoglobin is at 92 g/L. I have not had a hemoglobin level this high in 8 years. My numbers are usually around 75 g/L three weeks after a transfusion. (I've been anemic almost 10 years, way before I was diagnosed with myeloma.)
Double Yahoo!
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
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