I am new to the forum. My husband was just diagnosed six weeks ago following an emergency room diagnosis of a compression fracture which we found out was caused by multiple myeloma. He is hovering between Stage 1 and 2 with a solitary tumor in the spine and just this past week started radiation and began taking dexamethasone.
Today he is beginning symptoms of a cold, which I find disturbing because my daughter and I are not sick at all. His bloodwork looks fantastic - if the doctors didn't discover the tumor by accident, you would never know he had cancer at all. Even the first MRI of his fractured vertebrae didn't show it up.
Now I'm a little concerned, especially because they have given him an antiviral, as well, which he also started taking this past week.
I suppose he picked up the cold from all the visits to docs and hospitals for all the testing. But now what?
Are there special precautions we should be taking? If he does get sick, do we need to worry, or is he still able to fight off any infection at this point? We've never been the run-to-the-doc-at-the-first-sniffle types, but now I'm not sure if he should be doing something different.
Do I need to worry every time he gets exposed - should we be avoiding going to the movies or the grocery store. He works in a big company too, so obviously he will be exposed to a variety of individuals daily.
Any advice?
Forums
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: What to do when you get sick (and how to avoid it)?
LauraB-
Take a deep breath and don't panic. People with myeloma are more likely to develop a respiratory illness than most people, but it isn't necessarily an emergency. Just keep an eye on your husband and, if he seems like he is developing a fever, make sure to monitor his temperature. We usually are given the instruction that if we develop a temp of 100.5 F (38 C) that we should call the doctor. It's a good guideline, but doesn't always catch things early enough. I've had serious bronchiole involvement without ever going above 99 degree F (37.2 C) temp. So, if you think that it is developing into something more serious than a normal cold, don't hesitate to call the doctor, either your oncologist or your primary care doctor.
One of the things that is important to do is to make sure that you keep things as clean as possible around your husband, you, and the house. You don't have to go nuts, but frequent hand washing is important. No, you don't need to avoid public places, but do be aware of the people around you and try to avoid anyone who looks like they might be sick, coughing or sneezing.
Is your husband being seen by an myeloma specialist? This is really important, since myeloma isn't a common cancer. If you are seeing a specialist, s/he – or the nurse – should have given you instructions on what to look out for going forward. Ask as many questions as you have on this forum and ask the doctor any questions that you have.
All the best to you and your husband on this new journey,
Nancy in Phila
Take a deep breath and don't panic. People with myeloma are more likely to develop a respiratory illness than most people, but it isn't necessarily an emergency. Just keep an eye on your husband and, if he seems like he is developing a fever, make sure to monitor his temperature. We usually are given the instruction that if we develop a temp of 100.5 F (38 C) that we should call the doctor. It's a good guideline, but doesn't always catch things early enough. I've had serious bronchiole involvement without ever going above 99 degree F (37.2 C) temp. So, if you think that it is developing into something more serious than a normal cold, don't hesitate to call the doctor, either your oncologist or your primary care doctor.
One of the things that is important to do is to make sure that you keep things as clean as possible around your husband, you, and the house. You don't have to go nuts, but frequent hand washing is important. No, you don't need to avoid public places, but do be aware of the people around you and try to avoid anyone who looks like they might be sick, coughing or sneezing.
Is your husband being seen by an myeloma specialist? This is really important, since myeloma isn't a common cancer. If you are seeing a specialist, s/he – or the nurse – should have given you instructions on what to look out for going forward. Ask as many questions as you have on this forum and ask the doctor any questions that you have.
All the best to you and your husband on this new journey,
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: What to do when you get sick (and how to avoid it)?
Yes, he is being seen by Dr. Laubach at the Dana Farber in Boston.
We haven't been given any special instructions concerning precautions - I imagine because he's in very good shape. No anemia, no hypercalcemia, kidneys normal, and even his WBCs and RBCs are within normal range. The two biopsies indicate he has 10% kappa (CD138 positive with co-expression of CD79a).
I'm just curious how often we can expect him to get sick and what everybody else is doing to avoid going down that road. I imagine we will hit that wall at some point and it's better if we can reduce that risk as he's working on his first remission.
We haven't been given any special instructions concerning precautions - I imagine because he's in very good shape. No anemia, no hypercalcemia, kidneys normal, and even his WBCs and RBCs are within normal range. The two biopsies indicate he has 10% kappa (CD138 positive with co-expression of CD79a).
I'm just curious how often we can expect him to get sick and what everybody else is doing to avoid going down that road. I imagine we will hit that wall at some point and it's better if we can reduce that risk as he's working on his first remission.
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: What to do when you get sick (and how to avoid it)?
A few ideas to build on Nancy's post. It's really important to keep it as normal as possible and to live one's life. That said, if infection susceptibility is an issue, changes will be beneficial. Once ill, it may also take a little bit longer for a myeloma patient to recover.
Each patient's journey is different enough that it is hard to generalize. With passage of time, you'll gain experience and have a better sense of what to do. Ask the nurses in the practice for guidelines as to when to call between appointments - i.e., shortness of breath, light headedness, temperature above 100.5 F (38 C) - and keep it handy with the telephone numbers to use at all times.
My husband was diagnosed with an advanced case of myeloma, and is still quite susceptible to catching other bugs. As such, we follow a self-imposed, stricter regimen for minimizing exposure. We get out just about every day and enjoy ourselves.
It may well be overkill for most situations, but it sure is comprehensive. Hopefully, it can help you develop a strategy to fit your situation.
Each patient's journey is different enough that it is hard to generalize. With passage of time, you'll gain experience and have a better sense of what to do. Ask the nurses in the practice for guidelines as to when to call between appointments - i.e., shortness of breath, light headedness, temperature above 100.5 F (38 C) - and keep it handy with the telephone numbers to use at all times.
My husband was diagnosed with an advanced case of myeloma, and is still quite susceptible to catching other bugs. As such, we follow a self-imposed, stricter regimen for minimizing exposure. We get out just about every day and enjoy ourselves.
It may well be overkill for most situations, but it sure is comprehensive. Hopefully, it can help you develop a strategy to fit your situation.
- When washing hands, use and dispose of paper towels to dry hands.
- Hydrate, hydrate, hydrate: 2+ liters a day of fluids.
- Get in a routine that provides enough rest time and regular meals
- Exercise is important to keep up overall health and fight the fatigue and periods of inertia that come with the territory
- Door handles, counter tops, remote controls, cell and phone handsets, trash bins, etc. all benefit from an antiseptic wipe down.
- Little kids are often carrying around respiratory germs. Approach with caution.
- Carry disinfectant wipes, disposable gloves and masks when you're out and about. Use as needed; most masks are designed for single use.
- If you must fly, antiseptic wipes are helpful to clean arm rests, tray tables, light switch, air vent, seat belt buckles, seat pockets, etc. Considering wearing a personal air purifier and/or mask throughout the flight as the air is recirculated throughout the cabin.
- Be smart about using public transportation. Crowded subways, buses etc are an easy way to catch a bug
- Be smart about food handling, especially if food is raw or at room temperature.
- Time for someone other than him to handle the garbage and recycle bins and clean the toilets.
- Matinee movies are good; leave a seat or two between you and others.
- Eating out? Shoot for a table once removed from other parties.
- Buffets are another source of food borne illness.
- Be smart about what you eat raw re: food borne illness.
- Why shake hands when you can be trendy and fist pump instead?
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philatour - Who do you know with myeloma?: spouse
Re: What to do when you get sick (and how to avoid it)?
Hi LaruaB,
To add to philatour's list, make sure that he has had his flu and pneumonia shots, and that he gets his flu shot every year. Also, EJ's doctors wanted him to take a multi-vitamin every day to help him stay healthy.
Lyn
To add to philatour's list, make sure that he has had his flu and pneumonia shots, and that he gets his flu shot every year. Also, EJ's doctors wanted him to take a multi-vitamin every day to help him stay healthy.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: What to do when you get sick (and how to avoid it)?
All those are good suggestions. My infectious disease doctor told me 4 places to avoid after I got C. diff (after SCT).
1. Do not go in YMCA or workout places - too much staph infection
2. Do not go into schools because too many virus'
3. Avoid hospitals if possible because of C. diff
4. Stacy out of nursing homes because of C. diff
Also, do not share a communion cup if you are Catholic and do not drink out of same cup other people use.
1. Do not go in YMCA or workout places - too much staph infection
2. Do not go into schools because too many virus'
3. Avoid hospitals if possible because of C. diff
4. Stacy out of nursing homes because of C. diff
Also, do not share a communion cup if you are Catholic and do not drink out of same cup other people use.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: What to do when you get sick (and how to avoid it)?
To answer your question about how often people with myeloma get sick is difficult. As you will hear quite often, "Everyone is different."
The year between when I was diagnosed with smoldering myeloma and when I had my stem cell transplant, I never got sick. I worked in healthcare treating people one on one and had a desk in a pod of 6 desks. I told my patients if they thought that they were sick to stay home. I sent a few people home who came in obviously ill. I told my pod mates to cough away from my desk if they were sick (my desk was right in the middle). I was the only one in my pod who didn't come down with a cold or flu that year.
The year after my transplant I developed bronchitis 3 times. But, since then, I basically haven't been sick at all. A couple of times I felt like I was getting a cold, but the symptoms resolved in a few days. I'm not OCD about keeping things sanitized, avoiding other people and crowds, and I don't use masks or gloves. Since I live alone, I change the cat litter and manage the trash. But, I do pay attention to those around me. With the measles problem that is spreading, I am less likely to ride public transportation and to go into very congested closed spaces.
As has been said, you will learn what works for you and your husband. Ask your husband's doctor or nurse for specific things to be aware of.
Nancy in Phila
The year between when I was diagnosed with smoldering myeloma and when I had my stem cell transplant, I never got sick. I worked in healthcare treating people one on one and had a desk in a pod of 6 desks. I told my patients if they thought that they were sick to stay home. I sent a few people home who came in obviously ill. I told my pod mates to cough away from my desk if they were sick (my desk was right in the middle). I was the only one in my pod who didn't come down with a cold or flu that year.
The year after my transplant I developed bronchitis 3 times. But, since then, I basically haven't been sick at all. A couple of times I felt like I was getting a cold, but the symptoms resolved in a few days. I'm not OCD about keeping things sanitized, avoiding other people and crowds, and I don't use masks or gloves. Since I live alone, I change the cat litter and manage the trash. But, I do pay attention to those around me. With the measles problem that is spreading, I am less likely to ride public transportation and to go into very congested closed spaces.
As has been said, you will learn what works for you and your husband. Ask your husband's doctor or nurse for specific things to be aware of.
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: What to do when you get sick (and how to avoid it)?
It is different for everyone. I am two years post transplant and have not had any issues so far. I have flown to Turks and Caicos, Punta Cana (6 weeks after release from transplant) and several US flights. I take care of my wife, who has been sick with fevers 3 separate times, and I never caught anything. I go to concerts with thousands of people and I get in my hot tub and pools without much thought to it. In the three years since diagnosis, I have not had a cold, runny nose, fever, anything.
I tell people all of the time the ONLY time I have felt anything from having multiple myeloma is during treatment. I went to the doctor with back problems, I am non secretory, so every test was normal. I have never had organ or bone involvement. I had a singular plasmacytoma that screwed up my back permanently, so I didn't get off easy. The tumor ate 2 discs, I had 11-hour surgery and I am fused 2 - 15. But, still, I go to work every day, care for my house and family, and do what I can.
I don't get sleepy or tired except for the first couple of days after starting another round of Revlimid.
A lot of it is attitude, folks. I hate this disease, it has changed everything about my life and mostly for the bad, but I have to make the best of it and I can't let it end my life before it literally does. I will not let it beat me until it does, meaning I am not sitting home waiting for the end. I am living life and will continue to until the myeloma wins.
I hope they know they have a big fight on their hands, with or without multiple myeloma. I love my life and I love my wife, and I want every second I can have with her!
I tell people all of the time the ONLY time I have felt anything from having multiple myeloma is during treatment. I went to the doctor with back problems, I am non secretory, so every test was normal. I have never had organ or bone involvement. I had a singular plasmacytoma that screwed up my back permanently, so I didn't get off easy. The tumor ate 2 discs, I had 11-hour surgery and I am fused 2 - 15. But, still, I go to work every day, care for my house and family, and do what I can.
I don't get sleepy or tired except for the first couple of days after starting another round of Revlimid.
A lot of it is attitude, folks. I hate this disease, it has changed everything about my life and mostly for the bad, but I have to make the best of it and I can't let it end my life before it literally does. I will not let it beat me until it does, meaning I am not sitting home waiting for the end. I am living life and will continue to until the myeloma wins.
I hope they know they have a big fight on their hands, with or without multiple myeloma. I love my life and I love my wife, and I want every second I can have with her!
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bluemountain
Re: What to do when you get sick (and how to avoid it)?
My dad (75) was diagnosed with stage 3 multiple myeloma this month, I wonder what rules we should follow, as his family and caregivers?
I am allergic (as well as dad) and attract infections as a candle does moths. Now I feel some scratching in my throat and cough a bit. What should I do so that I won't infect dad? Should I isolate myself somehow, and/or wear a mask over my mouth, whenever I approach him?
I am so worried I may do something wrong which would worsen his state. Maybe I am over-reacting but just a month before father's health deteriorated in December, I had a severe cold and now I wonder if my cold could have speeded up the progress of dad's multiple myeloma?
I am allergic (as well as dad) and attract infections as a candle does moths. Now I feel some scratching in my throat and cough a bit. What should I do so that I won't infect dad? Should I isolate myself somehow, and/or wear a mask over my mouth, whenever I approach him?
I am so worried I may do something wrong which would worsen his state. Maybe I am over-reacting but just a month before father's health deteriorated in December, I had a severe cold and now I wonder if my cold could have speeded up the progress of dad's multiple myeloma?
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ladysherlockian - Who do you know with myeloma?: dad
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 75
Re: What to do when you get sick (and how to avoid it)?
Hi ladyscherlockian,
I have never heard of myeloma itself being "speeded up" by a cold or anything like it. I live with young children at home and obviously can't avoid germs. However, my doctors have told me that multiple myeloma patients most often get ill from bacteria/viruses that we already have in our own bodies, but which do not normally cause illness in an otherwise healthy person without myeloma.
Their message has been not to worry too much about being infected by others, and that we get far by simply washing our hands often and perhaps using individual towels at home.
I have never heard of myeloma itself being "speeded up" by a cold or anything like it. I live with young children at home and obviously can't avoid germs. However, my doctors have told me that multiple myeloma patients most often get ill from bacteria/viruses that we already have in our own bodies, but which do not normally cause illness in an otherwise healthy person without myeloma.
Their message has been not to worry too much about being infected by others, and that we get far by simply washing our hands often and perhaps using individual towels at home.
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Myosotis - Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 37
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