My husband, though refractory at this point, was still working, going to the gym, and living a fairly normal life - as of last week.
10 days ago his doctor started him on a new regimen that included the drug Treanda (bendamustine, in the same family as melphalan) at what is considered to be a very low dose. My husband had already been needing transfusions to keep up his hemoglobin and platelet levels.
Two nights after the infusion, he developed nausea and vomiting. About 30 hours later, I took him to the ER. He couldn't stop retching and he had 2 black eyes and numerous body bruises from what I assumed to be low platelets. Platelets were 5,000, hemoglobin 7.2.
They admitted him and transfused him with platelets and blood. Brought the platelets up to 16,000. For 2 more days the nausea and vomiting continued, and he had a bad headache. The oncologist on call said they were giving him supportive care. I finally got the nerve to stand up to him - tell him that I knew his cancer was worse, but that he had been highly functioning last week, and that I wanted his headache looked into. To appease me, he said he'd order an MRI. The PA that was standing there asked for a CAT scan. The ONC said no, an MRI would show cancer better. I told the ONC that I thought the PA was thinking about a brain bleed. The ONC said, OK, a CAT scan.
Off to CT he goes, and low and behold, he had multiple small brain bleeds from his low platelets. Things changed quickly. Suddenly he went from supportive care to being a patient in the ICU and getting lots of platelets. Neuro wanted his platelets above 50,000 to prevent further brain bleeding. 24 hours later, the effects of the bendamustine had worn off. My husband is completely alert and himself. No further nausea. CT shows no further bleeding. Later today he's going home! We already had an appointment scheduled at Mayo for next Wednesday with his transplant doctor (possibly another transplant?).
Moral of the story ... Go with your gut. If you or your loved one has a sudden change in their health status, don't let them be treated as just a cancer patient that needs supportive care. When that time comes, I'll be on board for that. My gut (and I'm a nurse) told me that was not yet.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Low platelets warning
I got really worried as I started reading this posting, rumnting. I was afraid it was leading up to some bad news. I can't tell you how glad I am that my suspicions turned out to be wrong.
You make a really good point, and it's great that you've shared this experience with everyone to really drive the message home. My feeling is that what you've described is a perfect example of why it's really important for patients and their caregivers to educate themselves as much as possible about their disease and what can happen with it.
I think being educated particularly makes a different in situations like the one you just described. The doctors treating your husband have huge amounts of experience. But they're also seeing many other patients, and don't always have a lot of time to get up to speed on the details of a particular patient's case.
We, on the other hand, have the chance to really, really get to know that case, and all the things that are going on with it, and the fact that we really care about that case makes everything all the more "sticky" in our brains.
So, if we've educated ourselves, we can leverage our detailed knowledge of "the case" to come up with instinctive / "gut" perspectives that can be really valuable.
There's another moral to your story, however. It's the value of having an involved, educated caregiver. Kudos to you for being in a position to make the difference you did.
I hope your husband continues his recovery from what happened, and that he responds well to the treatment he'll be on (whether it's bendamustine or something else).
You make a really good point, and it's great that you've shared this experience with everyone to really drive the message home. My feeling is that what you've described is a perfect example of why it's really important for patients and their caregivers to educate themselves as much as possible about their disease and what can happen with it.
I think being educated particularly makes a different in situations like the one you just described. The doctors treating your husband have huge amounts of experience. But they're also seeing many other patients, and don't always have a lot of time to get up to speed on the details of a particular patient's case.
We, on the other hand, have the chance to really, really get to know that case, and all the things that are going on with it, and the fact that we really care about that case makes everything all the more "sticky" in our brains.
So, if we've educated ourselves, we can leverage our detailed knowledge of "the case" to come up with instinctive / "gut" perspectives that can be really valuable.
There's another moral to your story, however. It's the value of having an involved, educated caregiver. Kudos to you for being in a position to make the difference you did.
I hope your husband continues his recovery from what happened, and that he responds well to the treatment he'll be on (whether it's bendamustine or something else).
Re: Low platelets warning
Yikes!
I'm glad your husband is doing better now, rumnting. Like Cheryl, I was pretty concerned when reading the first part of what you wrote.
You and Cheryl both make some excellent, important points. Thanks to both of you for your posts.
Mike
I'm glad your husband is doing better now, rumnting. Like Cheryl, I was pretty concerned when reading the first part of what you wrote.
You and Cheryl both make some excellent, important points. Thanks to both of you for your posts.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Low platelets warning
Oh my! What scary ordeal. I just read Tabitha Tow Burns recent opinion article, and she asserts that we have to be actively involved in our care, comparing our multiple myeloma journey to fly fishing. Your recent experience attests to that maxim.
Last summer when my normally athletic and active husband had a difficult time completing walks with our golden retrievers, I knew something was wrong, Finally, I took him to the emergency room and a very sharp ER nurse suspected something seriously wrong. We ended up at Presbyterian Hospital in Albuquerque, New Mexico and discovered that he had some sort of blood cancer, but they were not sure. At that moment, I told the medical team that we would be quickly heading to MD Anderson Medical Center in Houston.
We are now getting ready for his stem cell transplant - only by staying informed and actively participating in his care and treatment have we gotten to this point in our multiple myeloma journey.
Your experience with your husband's treatment and care is a reminder to all of us to stay engaged with the medical team but not be afraid to voice concerns, issues and doubts. I was so relieved to read that your husband is all right now after his harrowing ordeal. Good luck with his continued treatment.
Last summer when my normally athletic and active husband had a difficult time completing walks with our golden retrievers, I knew something was wrong, Finally, I took him to the emergency room and a very sharp ER nurse suspected something seriously wrong. We ended up at Presbyterian Hospital in Albuquerque, New Mexico and discovered that he had some sort of blood cancer, but they were not sure. At that moment, I told the medical team that we would be quickly heading to MD Anderson Medical Center in Houston.
We are now getting ready for his stem cell transplant - only by staying informed and actively participating in his care and treatment have we gotten to this point in our multiple myeloma journey.
Your experience with your husband's treatment and care is a reminder to all of us to stay engaged with the medical team but not be afraid to voice concerns, issues and doubts. I was so relieved to read that your husband is all right now after his harrowing ordeal. Good luck with his continued treatment.
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Low platelets warning
Please keep us posted as to how your husband's Mayo visit goes. I'm sending all my positive vibes to you. I'm hoping the Mayo doc has a great solution.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Low platelets warning
Another example of the two most important elements for a patient or caregiver. First, learn all you can about Multiple Myeloma, second and most importantly remember you need to be the manager of the care team. Wishing your husband and you the very best
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
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