Many of you have been riding shotgun with me through this journey (detailed blow-by-blow in this thread). My mother had an MRI today, and it appears that in addition to the two broken ribs, she now has FOUR compression fractures in her vertebrae. They are offering her kyphoplasty treatment to help with the pain and I need to make a decision whether or not to proceed with this.
Here's the problem: clinically, she is showing a good response to the Revlimid protocol after ~10 days on it (and 4 days in the hospital hydrated on a drip), and her blood chems were vastly improved today. However, in all other ways she is declining, including incoherence (possibly a dementia-response to the increasingly-powerful narcotics she is being given) and tremendous pain. She has no history of dementia, so as far as anybody can tell this is induced by something else; she is hopefully getting a psych/neural evaluation tomorrow to determine any underlying causes not yet identified, but at this point, nobody is sure whether the pain chicken or narcotic egg came first, making determining a treatment plan challenging.
Given her response to the Revlimid, continuing treatment seems appropriate; given her confusion, pain, and misery, moving her to palliative hospice seems a better choice, although if pain is reduced to a point where she doesn't need the narcotics, the confusion may also improve.
Leaving me faced wondering what the heck to do for her. She cannot make this decision for herself right now; she has patches of lucidity, but medical information leaves her confused at the best of times, which this most certainly isn't. I have to make a decision tomorrow as to whether or not to put her in for surgery on Wednesday. She has no significant complications (e.g., heart failure, asthma, copd etc) to contraindicate anasthesia although, obviously, at 82 that is always a risk.
Any input to help parse this information and make an informed decision for her are welcomed. Thank you!
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Re: Kyphoplasty, just Revlimid, palliative care, or ... ?
I'm so sorry you are in the difficult position of having to make this decision. And obviously we can't make that for you, especially not being there to see things for ourselves. But I can share with you a little about my husband.
Before his diagnosis, he was horribly confused, hallucinating, and just not in his right mind. I think I did tell you he had a pre-existing brain injury that probably contributed to his mental condition at the time. But the cancer was definitely the cause of all of his mental distress. Chemotherapy proved that. And the response was amazing. We were able to see tremendous improvement by his 4th week of treatment. If she's responding well to her current protocol, maybe there is some hope. If you don't see improvement, you can always choose palliative care at that time. Which might serve to help you feel you didn't stop too soon.
Wishing you all the best in your decision making, and in moving forward no matter what you choose. It can't be easy for you!
Before his diagnosis, he was horribly confused, hallucinating, and just not in his right mind. I think I did tell you he had a pre-existing brain injury that probably contributed to his mental condition at the time. But the cancer was definitely the cause of all of his mental distress. Chemotherapy proved that. And the response was amazing. We were able to see tremendous improvement by his 4th week of treatment. If she's responding well to her current protocol, maybe there is some hope. If you don't see improvement, you can always choose palliative care at that time. Which might serve to help you feel you didn't stop too soon.
Wishing you all the best in your decision making, and in moving forward no matter what you choose. It can't be easy for you!
Re: Kyphoplasty, just Revlimid, palliative care, or ... ?
Hi,
Let me start out by saying you're a good daughter to take such interest in mom. I had kyphoplasty for four fractures of the spine. The operation was not that bad. Recovery for ME was not that good. They still don't know what is causing my leg pain and back pains. But, having said that, they have me on dex, and my first treatment and my leg pain is gone. I'm hoping the same will happen with my back pain.
Good luck to you. Whatever decision you make, I know it will be the best and with mom's blessings.
Let me start out by saying you're a good daughter to take such interest in mom. I had kyphoplasty for four fractures of the spine. The operation was not that bad. Recovery for ME was not that good. They still don't know what is causing my leg pain and back pains. But, having said that, they have me on dex, and my first treatment and my leg pain is gone. I'm hoping the same will happen with my back pain.
Good luck to you. Whatever decision you make, I know it will be the best and with mom's blessings.
-
Joe
Re: Kyphoplasty, just Revlimid, palliative care, or ... ?
Hello,
If your mother is responding to Revlimid, that is a very good sign. There would be plenty of other treatment options if she were not responding to the drug, but the fact that she is responding to it (combined with dex, I believe) indicates that her disease is probably not that aggressive.
I think it's far too early to be thinking about just palliative care. I'm not an expert by any stretch of the imagination, but I could imagine that the confusion she is experiencing could be related to the pain medication she is on, the myeloma she has, or some combination of things causing imbalances in her blood chemistry.
If a doctor who knows what they are talking about says that they can successfully perform a kyphoplasty on your mother in her current state, and it will be likely to relieve her pain, then I say go for it.
But, please, do yourself and (especially) your mother the favor and get your mother's case reviewed by a myeloma specialist, and please do it soon. There's a reason it's the one thing you've heard almost everyone here say to you from almost the first response you got here in the forum. If your mother was actually symptomatic, not smoldering, earlier this year, a myeloma specialist never would have missed that diagnosis, and would have had her start treatment so none of these problems would have occurred.
Get her case reviewed by a myeloma specialist at one of the local university-affiliated cancer centers you mentioned. Almost all myeloma specialists who truly see myeloma patients all the time, and are abreast of the latest research in the field, are at university affiliated cancer centers.
If your mother is responding to Revlimid, that is a very good sign. There would be plenty of other treatment options if she were not responding to the drug, but the fact that she is responding to it (combined with dex, I believe) indicates that her disease is probably not that aggressive.
I think it's far too early to be thinking about just palliative care. I'm not an expert by any stretch of the imagination, but I could imagine that the confusion she is experiencing could be related to the pain medication she is on, the myeloma she has, or some combination of things causing imbalances in her blood chemistry.
If a doctor who knows what they are talking about says that they can successfully perform a kyphoplasty on your mother in her current state, and it will be likely to relieve her pain, then I say go for it.
But, please, do yourself and (especially) your mother the favor and get your mother's case reviewed by a myeloma specialist, and please do it soon. There's a reason it's the one thing you've heard almost everyone here say to you from almost the first response you got here in the forum. If your mother was actually symptomatic, not smoldering, earlier this year, a myeloma specialist never would have missed that diagnosis, and would have had her start treatment so none of these problems would have occurred.
Get her case reviewed by a myeloma specialist at one of the local university-affiliated cancer centers you mentioned. Almost all myeloma specialists who truly see myeloma patients all the time, and are abreast of the latest research in the field, are at university affiliated cancer centers.
Re: Kyphoplasty, just Revlimid, palliative care, or ... ?
Thanks all so very much.
Decision has been made to press ahead with the kyphoplasty, and to continue treatment for now; if she gets no pain relief from the procedure and/or the chemo stalls, we can reassess and jump to hospice/palliative instead; she is in pain, and pretty much ready to say "I'm done", but is willing to try the kyphoplasty in the hope of some relief. So, the plan is to perform the procedure tomorrow and press on with treatment for the time being.
Her SMM diagnosis was based on bone marrow biopsy, so "by the numbers". She actively masked what she now knows to have been symptoms, and mentioned NONE of the things that would have been clues, even when directly questioned. Point here is that maybe somebody else might have seen past that; maybe not. At this point, no way of knowing. I'm angry she didn't let me go to those early appointments with her (I offered, but she refused at that point) as I suspect I'd have seen through her ruses, but no point in woulda shoulda coulda now- we just have to press forward from here.
She's far too ill to shop for another doctor right now - is there a way to have her case reviewed without upsetting the (as far as I can tell, EXCELLENT) care and treatment she is currently receiving as an in-patient? We're in Baltimore, so I'm sure there will be a myeloma specialist at Johns Hopkins, but I haven't dealt with them before (out of network both for my parents and myself) so it will be something else I have to learn to navigate.
I will say I've been pleased with the hospital handling her case, although, obviously, I don't have the clinical knowledge to back up my positive impressions. Communication has been excellent, all my questions have been answered in detail (and very much according to what people here have told me to expect as far as answers I "should" be hearing), and it is a very human and compassionate team. If there's a way I can get a second opinion without further complicating a soup which already has a LOT of cooks in the kitchen.... by all means - educate me! I'll do what i can!
Decision has been made to press ahead with the kyphoplasty, and to continue treatment for now; if she gets no pain relief from the procedure and/or the chemo stalls, we can reassess and jump to hospice/palliative instead; she is in pain, and pretty much ready to say "I'm done", but is willing to try the kyphoplasty in the hope of some relief. So, the plan is to perform the procedure tomorrow and press on with treatment for the time being.
Her SMM diagnosis was based on bone marrow biopsy, so "by the numbers". She actively masked what she now knows to have been symptoms, and mentioned NONE of the things that would have been clues, even when directly questioned. Point here is that maybe somebody else might have seen past that; maybe not. At this point, no way of knowing. I'm angry she didn't let me go to those early appointments with her (I offered, but she refused at that point) as I suspect I'd have seen through her ruses, but no point in woulda shoulda coulda now- we just have to press forward from here.
She's far too ill to shop for another doctor right now - is there a way to have her case reviewed without upsetting the (as far as I can tell, EXCELLENT) care and treatment she is currently receiving as an in-patient? We're in Baltimore, so I'm sure there will be a myeloma specialist at Johns Hopkins, but I haven't dealt with them before (out of network both for my parents and myself) so it will be something else I have to learn to navigate.
I will say I've been pleased with the hospital handling her case, although, obviously, I don't have the clinical knowledge to back up my positive impressions. Communication has been excellent, all my questions have been answered in detail (and very much according to what people here have told me to expect as far as answers I "should" be hearing), and it is a very human and compassionate team. If there's a way I can get a second opinion without further complicating a soup which already has a LOT of cooks in the kitchen.... by all means - educate me! I'll do what i can!
Re: Kyphoplasty, just Revlimid, palliative care, or ... ?
I'm so glad that your mother finally started treatment and she is responding well to it so far. I will keep her in my prayers tomorrow for a good outcome with the kyphoplasty. I think that you made a good decision to go ahead with that procedure. If it means that she may be able to do away with the pain medications, or at least reduce them, then it will have been successful.
Recently the father of a friend of mine who has advanced Parkinsons was in the hospital because his Foley catheter was pulled out and he had an infection and extreme pain. Because he was combative they dosed him up with sedatives and with pain medication. From that he became pretty much unresponsive and when responsive he made no sense whatsoever. The attending doctor at the hospital called in hospice and he left the hospital on hospice. Once he got home and was off the medications that they had been giving him in the hospital and the pain had resolved, he went back to his normal self. Hospice has been called in when it wasn't time for it. The massive doses of medications had been to blame for his unresponsiveness. This may be the case for your mother also with the pain medications that she has been receiving.
In Baltimore there is John Hopkins and the University of Maryland where there are myeloma specialists. You can call both places and inquire about whether one of the specialists would review your mother's case. You might have to pay out of pocket for it, but it would be worth it. I know that you can also do a phone interview with Dr. Durie at the IMF. You have to send him all of your mother's records and tests for him to review prior to the scheduled phone conference. I don't know how much the IMF charges for this, but I don't think that it is an outrageous amount.
Tomorrow is going to be a successful day for your mother,
Nancy in Phila
Recently the father of a friend of mine who has advanced Parkinsons was in the hospital because his Foley catheter was pulled out and he had an infection and extreme pain. Because he was combative they dosed him up with sedatives and with pain medication. From that he became pretty much unresponsive and when responsive he made no sense whatsoever. The attending doctor at the hospital called in hospice and he left the hospital on hospice. Once he got home and was off the medications that they had been giving him in the hospital and the pain had resolved, he went back to his normal self. Hospice has been called in when it wasn't time for it. The massive doses of medications had been to blame for his unresponsiveness. This may be the case for your mother also with the pain medications that she has been receiving.
In Baltimore there is John Hopkins and the University of Maryland where there are myeloma specialists. You can call both places and inquire about whether one of the specialists would review your mother's case. You might have to pay out of pocket for it, but it would be worth it. I know that you can also do a phone interview with Dr. Durie at the IMF. You have to send him all of your mother's records and tests for him to review prior to the scheduled phone conference. I don't know how much the IMF charges for this, but I don't think that it is an outrageous amount.
Tomorrow is going to be a successful day for your mother,
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: Kyphoplasty, just Revlimid, palliative care, or ... ?
Hi,
I had very bad experience with dexamethasone - gave me very bad dementia. I did, however, have very good results with kyphoplasty and Revlimid. The kypho was relatively painless, but took a few months to be totally effective - I have four broken vertebrae. I had excellent results with Revlimid - went into complete remission in about four months and it's held for almost a year.
I hope that my results may give you some insight to the effectiveness of these treatments.
Best of Luck,
Rob
I had very bad experience with dexamethasone - gave me very bad dementia. I did, however, have very good results with kyphoplasty and Revlimid. The kypho was relatively painless, but took a few months to be totally effective - I have four broken vertebrae. I had excellent results with Revlimid - went into complete remission in about four months and it's held for almost a year.
I hope that my results may give you some insight to the effectiveness of these treatments.
Best of Luck,
Rob
-
acebass
Re: Kyphoplasty, just Revlimid, palliative care, or ... ?
I hope things went well with the kyphoplasty yesterday! Let us know when you can.
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