The good news is that I haven't had so much as a sniffle for four years, since I was diagnosed, when before that I would have three or four bouts of cold / flu,per year, followed inevitably by bronchitis, followed by pneumonia, followed by asthma.
I've had NONE of that, at all. Indeed, it makes dealing with side effects of treatment and maintenance a great deal easier. One has to go some to be sicker than I used to get with that cycle of misery.
The bad news is now I have one. Sniff. Cough. Body aches, headache, fatigue (over and above the Revlimid side effects) and fever. Now my normal temp is between 96.8 and 97.3 F,, so when my temp goes to 99, I don't care WHAT the docs say, that's a fever, with all the achey, chills, don't like the feel of clothes on my skin fever.
'Course, the docs still say that's not a fever, frustrating as it can be.
Hurts to cough, too. But that's probably because I hurt my rib last week, not from anything lung related. I don't think.
So, there really is a question here besides the 'whine.'
When do I start to worry about it, given the immune system issue? My WBC is, of course, chronically low because of the Revlimid.
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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: What to do about a cold / flu?
Wish you were not feeling bad, but I can offer what I just went through myself over the past month. In March I started to feel bad and started coughing. My fever started at 99 F (37.2 C) like yours, and then the first week of April my temperature jumped to 103 F (39.4 C) and I called my myeloma doctor who told me to go to the hospital to be checked for flu and/or pneumonia. The flu test was not fun at the hospital but after a CT scan they found I had pneumonia and ended up being hospitalized for a week.
I almost waited too late to go after my temperature increased past where I should have sought medical attention. After seeing the doctor after being hospitalized, I was told to go in to be checked whenever my temperature reaches 101.4 F (38.6 C). If it's the flu, I was told they have to administer the flu drug within the first 72 hours to help.
I hope you start feeling better soon.
I almost waited too late to go after my temperature increased past where I should have sought medical attention. After seeing the doctor after being hospitalized, I was told to go in to be checked whenever my temperature reaches 101.4 F (38.6 C). If it's the flu, I was told they have to administer the flu drug within the first 72 hours to help.
I hope you start feeling better soon.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: What to do about a cold / flu?
Thank you. I'm sure I will. Getting a chest X-ray today. I hope very much that I do NOT have pneumonia and that they DON'T put me in the hospital. I have too much to do!
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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: What to do about a cold / flu?
Update:
Went to urgent care once the fever broke. You know when you are running a fever, you absolutely do not feel like going anywhere, especially to urgent care or the ER where you have to sit and be utterly miserable for hours? Well, when my fever went down I went and sat in Urgent Care, miracle of miracles, they did NOT make me wait!
The doctor there confirmed that yes, I have asthmatic bronchitis (boy, do I not miss that stuff), and since I told her I need to sing soprano at my son's wedding two weeks from tomorrow, she threw the pharmacy at me. (grin) I love finding a kindred spirit!
So, after a shot of epinephrine, a breathing treatment, some antibiotics ('cause I did have that fever) and a 'burst' pack of predisone, I may just make it.
The fever is back, of course, but if I remember right it will come back every night for at least a week. But I can breathe, and in a few days I'll sing. I may even be able to hit that High C they want me to try for.
Wish me luck. A prayer or two would be welcome, as well. I know, it may seem silly, given everything else we all have to deal with, to ask for such things just to be able to hit the high note at a wedding, but I have five kids, all over thirty, and so far he's only the second one to get married. It's hard to sing 'Hallelujah' if you can't hit the high notes.
Went to urgent care once the fever broke. You know when you are running a fever, you absolutely do not feel like going anywhere, especially to urgent care or the ER where you have to sit and be utterly miserable for hours? Well, when my fever went down I went and sat in Urgent Care, miracle of miracles, they did NOT make me wait!
The doctor there confirmed that yes, I have asthmatic bronchitis (boy, do I not miss that stuff), and since I told her I need to sing soprano at my son's wedding two weeks from tomorrow, she threw the pharmacy at me. (grin) I love finding a kindred spirit!
So, after a shot of epinephrine, a breathing treatment, some antibiotics ('cause I did have that fever) and a 'burst' pack of predisone, I may just make it.
The fever is back, of course, but if I remember right it will come back every night for at least a week. But I can breathe, and in a few days I'll sing. I may even be able to hit that High C they want me to try for.
Wish me luck. A prayer or two would be welcome, as well. I know, it may seem silly, given everything else we all have to deal with, to ask for such things just to be able to hit the high note at a wedding, but I have five kids, all over thirty, and so far he's only the second one to get married. It's hard to sing 'Hallelujah' if you can't hit the high notes.
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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: What to do about a cold / flu?
Hi Dianalad,
I am wishing you luck as you get thru your asthmatic bronchitis, and the fever. Hope you are better for the wedding of one of your children. Congratulations!
My husband and I sang at both of our daughter's weddings! (At the receptions). That was lots of fun and we practiced lots. Not sure how it went over but it was a festive event. As a choir singer, we are always asked to drink lots of water the days before a concert, and practice daily too. I keep cough drops in my tote bag and sometimes have to use them. To hit the high notes, we open up the throat, and don't even sing the consonants sometimes (just 'ah'). I sing second soprano, so am not really expected to go up to G sharp or A, although I can do that sometimes!
Is there any way you could get an arrangement of your song that is in a slightly lower key, so that you wouldn't have to sing up in the stratosphere?
I am wishing you luck as you get thru your asthmatic bronchitis, and the fever. Hope you are better for the wedding of one of your children. Congratulations!
My husband and I sang at both of our daughter's weddings! (At the receptions). That was lots of fun and we practiced lots. Not sure how it went over but it was a festive event. As a choir singer, we are always asked to drink lots of water the days before a concert, and practice daily too. I keep cough drops in my tote bag and sometimes have to use them. To hit the high notes, we open up the throat, and don't even sing the consonants sometimes (just 'ah'). I sing second soprano, so am not really expected to go up to G sharp or A, although I can do that sometimes!
Is there any way you could get an arrangement of your song that is in a slightly lower key, so that you wouldn't have to sing up in the stratosphere?
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: What to do about a cold / flu?
Hi, Nancy. (grin) It would be utter blasphemy to sing Handel's Allelujah chorus in a lower key just to accommodate the sopranos. However, I'm only doing a couple of the 'allelujahs,' not the whole thing. Not really appropriate, after all!
Mostly we're doing 'Adam and Jennifer, a Walt Disney Movie." It'll be fun, but a couple of those early songs (like "Some day my prince will come") are brutal. The newer ones seem to have been written in my daughter's range. She's an alto. I was thinking about doing 'A thousand years' from Twilight, because (though I almost hate to admit this) the Twilight series was written by a Mormon and the song has some very Mormon undertones, believe it or not. However, it's way too low for me and I'd have to get it professionally transposed and recorded up about three keys. Not to mention how incredibly overdone it is.
But I'll have a voice. As long as I'm willing to take those "FEED ME, never mind trying to get any sleep FEED ME give me something to do RIGHT NOW that doesn't require more than five minutes to do and considerably less concentration FEED ME but make sure it's only finger foods because I couldn't hold a fork still and for crying out loud, don't make me angry. You wouldn't like me when I'm angry, " pills.
I also get a little silly when I'm taking prednisone on top of an epinephrine shot and breathing treatments.
But I can breathe.
And in two weeks, I will sing.
Good enough.
Mostly we're doing 'Adam and Jennifer, a Walt Disney Movie." It'll be fun, but a couple of those early songs (like "Some day my prince will come") are brutal. The newer ones seem to have been written in my daughter's range. She's an alto. I was thinking about doing 'A thousand years' from Twilight, because (though I almost hate to admit this) the Twilight series was written by a Mormon and the song has some very Mormon undertones, believe it or not. However, it's way too low for me and I'd have to get it professionally transposed and recorded up about three keys. Not to mention how incredibly overdone it is.
But I'll have a voice. As long as I'm willing to take those "FEED ME, never mind trying to get any sleep FEED ME give me something to do RIGHT NOW that doesn't require more than five minutes to do and considerably less concentration FEED ME but make sure it's only finger foods because I couldn't hold a fork still and for crying out loud, don't make me angry. You wouldn't like me when I'm angry, " pills.
I also get a little silly when I'm taking prednisone on top of an epinephrine shot and breathing treatments.
But I can breathe.
And in two weeks, I will sing.
Good enough.
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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: What to do about a cold / flu?
Dianalad,
So good to hear you are doing better.
I wish you the best singing at the wedding.
So good to hear you are doing better.
I wish you the best singing at the wedding.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: What to do about a cold / flu?
Update: Strange One.
Sometimes I have to wonder about luck, or blessings, or something. I haven't had so much as a case of the sniffles since I began treatment for multiple myeloma in 2013. Not even hay fever, and I'm allergic to pretty much everything that grows. It's been pretty neat.
So, I came down with the bug that started this thread, was worried about my voice (singing at my son's wedding and all) and not knowing precisely what to do / tell the docs. My last update was about how the Urgent Care doc 'threw the pharmacy' at me so that I could get my voice back, and so far that's working. I'm getting better every day.
However, during the process I had this chest x-ray, and my oncologist saw a problem on one of my ribs. So he ordered CT scans (without contrast; I'm allergic) and an MRI, and ... yep.
Plasmacytomas on my rib and the back of my skull and perhaps more places. We'll know more later. Took the doctor (and me) by surprise. My blood work is still really good, and when I was diagnosed I had no bone involvement; no lytic lesions at all. I haven't even been on Zometa.
He's particularly worried about the one on my skull. Hasn't gone past the bone, but it's close. So now he's talking about Pomalyst, dexamethasone, and Kyprolis, and a possible set up for another transplant later in the year.
Wow.
What I'm thinking right now is that, if I hadn't come down with a bug, we wouldn't have known about any of this and the first thing I might have known about it was a seizure or something. Who knew one could be grateful to a flu bug?
Oh, well. Next.
Sometimes I have to wonder about luck, or blessings, or something. I haven't had so much as a case of the sniffles since I began treatment for multiple myeloma in 2013. Not even hay fever, and I'm allergic to pretty much everything that grows. It's been pretty neat.
So, I came down with the bug that started this thread, was worried about my voice (singing at my son's wedding and all) and not knowing precisely what to do / tell the docs. My last update was about how the Urgent Care doc 'threw the pharmacy' at me so that I could get my voice back, and so far that's working. I'm getting better every day.
However, during the process I had this chest x-ray, and my oncologist saw a problem on one of my ribs. So he ordered CT scans (without contrast; I'm allergic) and an MRI, and ... yep.
Plasmacytomas on my rib and the back of my skull and perhaps more places. We'll know more later. Took the doctor (and me) by surprise. My blood work is still really good, and when I was diagnosed I had no bone involvement; no lytic lesions at all. I haven't even been on Zometa.
He's particularly worried about the one on my skull. Hasn't gone past the bone, but it's close. So now he's talking about Pomalyst, dexamethasone, and Kyprolis, and a possible set up for another transplant later in the year.
Wow.
What I'm thinking right now is that, if I hadn't come down with a bug, we wouldn't have known about any of this and the first thing I might have known about it was a seizure or something. Who knew one could be grateful to a flu bug?
Oh, well. Next.
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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: What to do about a cold / flu?
Hello dianaiad,
This is shocking! That the plasmacytomas were discovered 'accidentally' raises the question why the whole body x-rays were not ordered routinely, at least once a year. Or maybe these lesions developed in between the annual x-rays.
When I had consulted my oncologist about some hip and shoulder pains about a year after my original diagnosis in late 2014, he ordered my whole body x-rays and he had said that they were due because it was almost a year since the last x-rays. I can't be sure if he would have ordered them if I had not reported my joint or bone pains. I had the x-rays again late 2016 and both times my oncologist told me that 'there is nothing (new) there' and I could continue all my physical activities. I would have assumed that the x-ray monitoring of myeloma patients is routine. I am certainly going to make sure I have the x-rays every year.
I have been following your recent posts on this thread and on the 'Indolent vs. aggressive relapse' thread very closely. My monthly blood test results are following a similar pattern like yours over the past 6 or 7 months, as posted on April 14. My first impression from those was that your kappa-lambda ratio is still within the normal range, indicating no abnormal monoclonal activity. Wow, that doesn't seem to be the case as shown by these x-ray findings!
Your posts provide an important guidance to me, in particular, because I may be on a similar path, at least as far as our recent blood tests are concerned. I have not had any Zometa shots, either. I do not know how the p17 deletion complicates the matters for you. I do not have that deletion. I have a nonsecretory, kappa free light chain chain, trisomies-only multiple myeloma. I did not opt for the autologous stem cell transplant, however.
I think the latest Mayo Clinic guidelines that Ron Harvot posted on the "indolent vs. aggressive relapse" thread indicate that the Pomalyst, dexamethasone, and Kyprolis therapy is the recommended treatment. I hope that works well for you. All the best!
This is shocking! That the plasmacytomas were discovered 'accidentally' raises the question why the whole body x-rays were not ordered routinely, at least once a year. Or maybe these lesions developed in between the annual x-rays.
When I had consulted my oncologist about some hip and shoulder pains about a year after my original diagnosis in late 2014, he ordered my whole body x-rays and he had said that they were due because it was almost a year since the last x-rays. I can't be sure if he would have ordered them if I had not reported my joint or bone pains. I had the x-rays again late 2016 and both times my oncologist told me that 'there is nothing (new) there' and I could continue all my physical activities. I would have assumed that the x-ray monitoring of myeloma patients is routine. I am certainly going to make sure I have the x-rays every year.
I have been following your recent posts on this thread and on the 'Indolent vs. aggressive relapse' thread very closely. My monthly blood test results are following a similar pattern like yours over the past 6 or 7 months, as posted on April 14. My first impression from those was that your kappa-lambda ratio is still within the normal range, indicating no abnormal monoclonal activity. Wow, that doesn't seem to be the case as shown by these x-ray findings!
Your posts provide an important guidance to me, in particular, because I may be on a similar path, at least as far as our recent blood tests are concerned. I have not had any Zometa shots, either. I do not know how the p17 deletion complicates the matters for you. I do not have that deletion. I have a nonsecretory, kappa free light chain chain, trisomies-only multiple myeloma. I did not opt for the autologous stem cell transplant, however.
I think the latest Mayo Clinic guidelines that Ron Harvot posted on the "indolent vs. aggressive relapse" thread indicate that the Pomalyst, dexamethasone, and Kyprolis therapy is the recommended treatment. I hope that works well for you. All the best!
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: What to do about a cold / flu?
I have not had annual whole body x-rays since my diagnosis. The reasoning was, evidently, that since I had absolutely no bone involvement (no lytic lesions anywhere, though my dentist had a couple of concerns) and absolutely no osteoporosis, there was really no need for it. I've certainly not had any bone pain until the last three or four weeks, and even that was "Wait, did I pull a muscle?".
I don't think bursitis of the hip counts there.
So thanks to the universe, or God, or pure darned luck that I got my first flu / bug in four years.
I imagine that I'll have quite a few pictures taken of me from now on.
Now?
Bone marrow biopsy next week sometime, and the doc didn't even try to get me to do that in his office! That's one procedure I intend not to be 'there' for. Call me a wuss if you want, but dang. I'll put up with a lot, but there's no need to put up with something I don't have to put up with.
I don't think bursitis of the hip counts there.
So thanks to the universe, or God, or pure darned luck that I got my first flu / bug in four years.
I imagine that I'll have quite a few pictures taken of me from now on.
Now?
Bone marrow biopsy next week sometime, and the doc didn't even try to get me to do that in his office! That's one procedure I intend not to be 'there' for. Call me a wuss if you want, but dang. I'll put up with a lot, but there's no need to put up with something I don't have to put up with.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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