Hi,
I’m just about to start the medication for my treatment and I’m wondering if it’s OK to go out in public after listening to the pharmacist talk about that Revlimid and risk of infection.
I’m single and and it seems very depressing to stay at home all the time and never to be around anyone. I also have to work too as I’m only 59 and right now I work from my home doing sales but I’m hoping I’m not going to be so fatigued that it’s going to be hard for me to do it.
Thanks so much!
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Re: Is it safe to go out in public during treatment?
I worked in an elementary school as a teaching assistant all through my Revlimid, Velcade, and dexamethasone treatment, with the full approval of my oncologist. I was very tired at the end of the day, but I made it through the school year. I have worked there for several years, so I think my body was used to the germs that I was around. Other than work, I didn't have the energy to go out much. Now that I'm on Revlimid maintenance, my energy level is better.
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LindaM - Name: Linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2016
- Age at diagnosis: 59
Re: Is it safe to go out in public during treatment?
I've been on Revlimid now at one dose or another for six years and have never had an issue with being out in public. Of course, that's just my personal experience and you should probably talk to your oncologist about this, but I've never been warned about an increased risk of getting sick just from being around others. (Except for the period right after the stem cell transplant, but that was a whole different thing!) I'd be interested to hear if anyone else has either been told to avoid being out in public or has had problems with it
For what it's worth, I've also never had an issue with fatigue from Revlimid. The dexamethasone was a huge pain in the *%$ but it was tolerable. If you're going to be taking dex as well, I'd recommend doing a search on it in this forum. There are a variety of coping strategies different people have come up with to deal with its side effects and these can be very helpful. In the end, the effect of both of these drugs vary a lot from person to person and you'll need to take a little time at the beginning to see how they affect you. Best wishes! I hope the Revlimid works well for you and that the side effects are minimal or non-existent
For what it's worth, I've also never had an issue with fatigue from Revlimid. The dexamethasone was a huge pain in the *%$ but it was tolerable. If you're going to be taking dex as well, I'd recommend doing a search on it in this forum. There are a variety of coping strategies different people have come up with to deal with its side effects and these can be very helpful. In the end, the effect of both of these drugs vary a lot from person to person and you'll need to take a little time at the beginning to see how they affect you. Best wishes! I hope the Revlimid works well for you and that the side effects are minimal or non-existent
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Is it safe to go out in public during treatment?
Hi Smile001001, I think it's better to get out and about when you can and not be at home all the time.
Precautions I have taken when I was taking Revlimid, in terms of a decreased immunity, was to wash my hands a lot, keep hand sanitizer and a mask in my purse, and avoid people who were coughing or sneezing! It's not rude to back away from someone who is sick, I think. Also airplanes seem to pose problems and one must be careful when flying about infectious diseases also.
If your oncologist recommends this, you could get caught up on any vaccinations that are out of date, plus the flu shot and pneumonia vaccines. Recently I have taken the new non-live sHIngles vaccine too, over two months. After doing everything you can to avoid getting sick, just get out and enjoy the summer!
Precautions I have taken when I was taking Revlimid, in terms of a decreased immunity, was to wash my hands a lot, keep hand sanitizer and a mask in my purse, and avoid people who were coughing or sneezing! It's not rude to back away from someone who is sick, I think. Also airplanes seem to pose problems and one must be careful when flying about infectious diseases also.
If your oncologist recommends this, you could get caught up on any vaccinations that are out of date, plus the flu shot and pneumonia vaccines. Recently I have taken the new non-live sHIngles vaccine too, over two months. After doing everything you can to avoid getting sick, just get out and enjoy the summer!
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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: Is it safe to go out in public during treatment?
I don't know what the official medical advice is, but I have never had any problem. I have been on various drugs, mostly Revlimid and dexamethasone, and some Velcade for a while, for about a year and a half. Like Nancy, I do a lot of hand washing, and try not to let people hug me, or breathe on me. I tell them I have a compromised immune system, and they understand. (I don't know if I really do have a compromised immune system, but if not, it is an effective white lie.) And I monitor my blood counts, e.g., white blood cells, from the monthly lab results that my oncologist orders, to make sure they remain reasonable.
Other than avoiding commercial airplane flights, which are notoriously bug-ridden, I have not limited my activities at all.
In the last year and a half that I have been on these drugs, I have gotten one minor cold, but I usually get one cold a year anyway. Recovery was reasonably quick. And I caught it from my wife, who got it first, so it wasn't because of my outside activities, it was because of hers!
Just one person's experience. Good luck!
Other than avoiding commercial airplane flights, which are notoriously bug-ridden, I have not limited my activities at all.
In the last year and a half that I have been on these drugs, I have gotten one minor cold, but I usually get one cold a year anyway. Recovery was reasonably quick. And I caught it from my wife, who got it first, so it wasn't because of my outside activities, it was because of hers!
Just one person's experience. Good luck!
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Is it safe to go out in public during treatment?
Thank you all so very much for all of your information. It is so very helpful!
The pharmacist made it sound like if I go out in public I will definitely get sick and end up in the hospital! I’m planning on starting my medications on July 2 after I get back from a vacation. And yes, I will be taking the dexamethasone as well, so I will definitely look up the information on this board in regard to it.
I’m so glad that you were able to take less medicine, Linda. I’m hoping to be able to do that as well! I’m hoping that I respond well to the treatment and I will be doing everything else I can, including diet and supplements!
I wish you all continued success with your treatment plans!
The pharmacist made it sound like if I go out in public I will definitely get sick and end up in the hospital! I’m planning on starting my medications on July 2 after I get back from a vacation. And yes, I will be taking the dexamethasone as well, so I will definitely look up the information on this board in regard to it.
I’m so glad that you were able to take less medicine, Linda. I’m hoping to be able to do that as well! I’m hoping that I respond well to the treatment and I will be doing everything else I can, including diet and supplements!
I wish you all continued success with your treatment plans!
Re: Is it safe to go out in public during treatment?
I think the others covered it, but I wanted to add that while yes, you can and should go out in public, once you have myeloma, you kind of have to reorient your mind to being more cautious than before. I know it took me a while to figure out that I basically had a cancer of the immune system, so my immune system would never work as effectively as it did before, regardless of the drugs.
Keep bottles of sanitizer in your car and clean your hands whenever you get in; keep sanitizing wipes in your purse; stay away from people who are sick or coughing. Stick a mask in your purse for doctor's waiting areas. You hopefully won't get sick and end up in the hospital, as the pharmacist warns, but you have to be more careful than before. I believe even if you are on Revlimid, you must get medical attention (i.e. go to the emergency room if your temperature is above 100.4 F (38 C); talk to your doctor about this.
I am on a drug related to Revlimid, and it drives down my neutrophils, thus my ability to fight infection, each month, and I never know quite how low they are. Knowing your neutrophil levels, and how they respond to Revlimid, is useful; you get them with your monthly CBC blood tests. You can lead a pretty normal life, I've found, even if you have to get a stem cell transplant. You just have to live a little differently.
Also, talk to your doctor about any supplements you might be considering taking; they can interact/interfere with your medications. When I was diagnosed, well-meaning friends offered me high doses of vitamin C, others gave me green tea, both of which can hamper the anti-cancer effects of certain drugs.
I wish you all the best and good health!
Keep bottles of sanitizer in your car and clean your hands whenever you get in; keep sanitizing wipes in your purse; stay away from people who are sick or coughing. Stick a mask in your purse for doctor's waiting areas. You hopefully won't get sick and end up in the hospital, as the pharmacist warns, but you have to be more careful than before. I believe even if you are on Revlimid, you must get medical attention (i.e. go to the emergency room if your temperature is above 100.4 F (38 C); talk to your doctor about this.
I am on a drug related to Revlimid, and it drives down my neutrophils, thus my ability to fight infection, each month, and I never know quite how low they are. Knowing your neutrophil levels, and how they respond to Revlimid, is useful; you get them with your monthly CBC blood tests. You can lead a pretty normal life, I've found, even if you have to get a stem cell transplant. You just have to live a little differently.
Also, talk to your doctor about any supplements you might be considering taking; they can interact/interfere with your medications. When I was diagnosed, well-meaning friends offered me high doses of vitamin C, others gave me green tea, both of which can hamper the anti-cancer effects of certain drugs.
I wish you all the best and good health!
Re: Is it safe to go out in public during treatment?
Thanks, Pippy! They said they are giving me an antiviral drug to take along with the three drugs. I’m hoping that I won’t have to be on three drugs forever but who knows! I think it’s awesome that I’ve read that a number of people have been able to get down to just one drug! I really really appreciate everybody’s thoughts and information so much it makes me feel so much better that I might be able to go out in public and enjoy other people again!
Re: Is it safe to go out in public during treatment?
Great that you are maybe on acyclovir to prevent shingles? And make sure you get the pill / infusion to prevent pneumocystis pneumonia.
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