I was diagnosed with smoldering myeloma four years ago and credit my GI team for noticing the high numbers of IgG proteins in my lab workup. I have been monitored closely and just this week got the news that it is now multiple myeloma. There is a lesion in my arm found in a recent MRI, but I am grateful that it's been caught so early.
Unfortunately, I was expecting this news as my mother was diagnosed when she was 68 and I am now 67.5. I have been told multiple times that heredity does not have a role here, but my instincts kept telling me something different. I know treatments have improved significantly since 1985, but she suffered greatly and was in a lot of pain. She lived 7 years after the diagnosis when they told her she only had six months. I have high hopes I will get at least 7 years or better but with a better quality of life.
I will soon start treatment and haven't even gotten the bone marrow biopsy report yet, nor met with the hematologist regarding my treatment, but have spent the last few days reading on the internet and finding this forum.
My big question is: how will it all affect my ability to travel? I have a trip planned to Japan in late May, but I am guessing I am going to have to call this off for now. And I have some local shorter trips planned before that.
Do others travel while under treatment? Do you get just too tired to do so? I have read where I would need blood testing every two weeks, at least at the beginning.
Does this disease progress so quickly now that it is multiple myeloma that I can't wait till June to start treatment?
I would be happy to hear from some of you, as I know my hematologist will say "it's up to you."
How many "rounds" of treatment will I get to begin with?
Thanks in advance for your advice!
Forums
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MJH - Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 67
Re: Long-distance travel soon after diagnosis?
I think that your hematologist will want you to start treatment quickly since you have a bone lesion. The quicker you start treatment, the sooner it will start doing its job and lower the chance that you'll develop more lesions and that the one you have in your arm will progress.
When are you scheduled to see the oncologist?
It depends on what your treatment regimen will be whether you will be able to travel right now. If you start with a regimen that includes Velcade, you will be getting an injection of it at least once a week for 3 weeks with one week off. So, it would be difficult to travel during the 3 weeks that you are getting the Velcade. So, you might be able to take short trips during the one week off depending how you feel. But, you won't know that until you start treatment.
Again, depending on the treatment regimen you are started with and what your oncologist's style of treating is will dictate how many cycles of treatment you get initially. Of course, how you respond to treatment comes into play, too.
At this point I would suggest that you get a second opinion from a myeloma specialist if the oncologist that you are seeing isn't one.
All the best to you as you begin treatment,
Nancy in Phila
When are you scheduled to see the oncologist?
It depends on what your treatment regimen will be whether you will be able to travel right now. If you start with a regimen that includes Velcade, you will be getting an injection of it at least once a week for 3 weeks with one week off. So, it would be difficult to travel during the 3 weeks that you are getting the Velcade. So, you might be able to take short trips during the one week off depending how you feel. But, you won't know that until you start treatment.
Again, depending on the treatment regimen you are started with and what your oncologist's style of treating is will dictate how many cycles of treatment you get initially. Of course, how you respond to treatment comes into play, too.
At this point I would suggest that you get a second opinion from a myeloma specialist if the oncologist that you are seeing isn't one.
All the best to you as you begin treatment,
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: Long-distance travel soon after diagnosis?
High MJH:
Further to Nancy's comments to which I agree 100%:
At worst case, once you go from smoldering to active, the disease could start to move quickly. You need to be very careful at this stage. In my wife's case, our hematologist was watching for many years, and even though the only symptom was anemia, he said to start treatment when the M-spike passed 4.
We did want to speak with a couple of experts at that time, and since it had been moving slowly up for a long period of time, we thought we had a little bit of time. In one month, the M-Spike had climbed to about 5 and in another month it had climbed to about 7. That was very scary.
Everyone is different, you might be OK, but you have to be vigilant. You are correct in that the outlook today is a lot better than 30 years ago, however, for now be careful.
I would not worry about one short trip, but going away for a month could be another story. That actually could be done a little bit down the road when you have bounced back from your initial induction, whatever it is.
Good luck.
Further to Nancy's comments to which I agree 100%:
At worst case, once you go from smoldering to active, the disease could start to move quickly. You need to be very careful at this stage. In my wife's case, our hematologist was watching for many years, and even though the only symptom was anemia, he said to start treatment when the M-spike passed 4.
We did want to speak with a couple of experts at that time, and since it had been moving slowly up for a long period of time, we thought we had a little bit of time. In one month, the M-Spike had climbed to about 5 and in another month it had climbed to about 7. That was very scary.
Everyone is different, you might be OK, but you have to be vigilant. You are correct in that the outlook today is a lot better than 30 years ago, however, for now be careful.
I would not worry about one short trip, but going away for a month could be another story. That actually could be done a little bit down the road when you have bounced back from your initial induction, whatever it is.
Good luck.
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JPC - Name: JPC
Re: Long-distance travel soon after diagnosis?
Nancy,
Thanks so much for such a quick response! I have an appointment not this coming week, but the week after with my hematologist. I have great confidence in him as we are here in Boston surrounded by excellent options for health care.
I only had the bone marrow biopsy this past Tuesday, and can't see the results online as yet. I can however see the results of my IFE test and the IgG has jumped significantly in the last two weeks, compared to the last four years where that wasn't much change at all. I plan to call the doc Monday.
I am supposed to leave Tuesday for Chicago returning the following Monday and I am wondering if I should even wait a week. I am guessing they can look at the biopsy results and give me some direction on Monday. I do want to start ASAP and need to know if one week will make a difference.
In my heart I know I have to give up the trip to Japan, but hope that I will do well and can go sometime in the future.
Again, I really appreciate your time in responding.
Thanks so much for such a quick response! I have an appointment not this coming week, but the week after with my hematologist. I have great confidence in him as we are here in Boston surrounded by excellent options for health care.
I only had the bone marrow biopsy this past Tuesday, and can't see the results online as yet. I can however see the results of my IFE test and the IgG has jumped significantly in the last two weeks, compared to the last four years where that wasn't much change at all. I plan to call the doc Monday.
I am supposed to leave Tuesday for Chicago returning the following Monday and I am wondering if I should even wait a week. I am guessing they can look at the biopsy results and give me some direction on Monday. I do want to start ASAP and need to know if one week will make a difference.
In my heart I know I have to give up the trip to Japan, but hope that I will do well and can go sometime in the future.
Again, I really appreciate your time in responding.
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MJH - Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 67
Re: Long-distance travel soon after diagnosis?
Hi MJH,
Sorry to hear the news about your spike in IgG numbers.
It sounds like you are in a similar situation as my wife about 1 year ago. Smoldering myeloma for 6 years, then a sudden jump. She has IgG kappa multiple myeloma.
A word of caution about viral infections:
With very high IgG numbers, your immune system basically gets crowded out by all the useless IgG myeloma cells being generated. In my wife's case, she peaked with a IgG number in the 4400 range and basically zero in the other immunoglobulin ranges.
When you talk to your doctor, ask him/her about anti-viral meds to reduce the risk of infection while you get ready for your therapy.
A big risk is varicella zoster virus (shingles). I had read about it, but it didn't click. She had had the shingles vaccine, right? Wrong! She came down with it just before we were supposed to meet with the local oncologist to discuss treatment options. Delayed things by two weeks. When we met with the myeloma specialist at UCSF, he asked about anti-virals. I said huh? He got on the cell phone with the local oncologist and gave him a piece of his mind right there;>). Yep, we both missed it ...
A standard anti-viral during myeloma therapy is acyclovir 400 mg per day. Ask about it.
About travel:
You can do it (based on your doc's recommendations), but you have to watch out for infections, specifically colds, flu, or other.
We traveled to the Philippines during her first month of induction (dex only).
We cleaned the house that we stayed at with heavy doses of Lysol, all touchable surfaces twice a week. Made everyone that was visiting use hand cleaner and wear paper booties if they came in the house. Janet wore a mask anytime she was in public and especially while on a plane!
Her anima was very bad so we didn't spend much time out during our excursions. We did lots of short excursions but she couldn't stand on her feet for more than about 30 minutes at a time.
By the time we got home, the dex had arrested further progression based on her LDH numbers returning to normal and her hemoglobin rising from 7.8 to 9.0. AND she didn't get sick!
Best of luck!
John
Sorry to hear the news about your spike in IgG numbers.
It sounds like you are in a similar situation as my wife about 1 year ago. Smoldering myeloma for 6 years, then a sudden jump. She has IgG kappa multiple myeloma.
A word of caution about viral infections:
With very high IgG numbers, your immune system basically gets crowded out by all the useless IgG myeloma cells being generated. In my wife's case, she peaked with a IgG number in the 4400 range and basically zero in the other immunoglobulin ranges.
When you talk to your doctor, ask him/her about anti-viral meds to reduce the risk of infection while you get ready for your therapy.
A big risk is varicella zoster virus (shingles). I had read about it, but it didn't click. She had had the shingles vaccine, right? Wrong! She came down with it just before we were supposed to meet with the local oncologist to discuss treatment options. Delayed things by two weeks. When we met with the myeloma specialist at UCSF, he asked about anti-virals. I said huh? He got on the cell phone with the local oncologist and gave him a piece of his mind right there;>). Yep, we both missed it ...
A standard anti-viral during myeloma therapy is acyclovir 400 mg per day. Ask about it.
About travel:
You can do it (based on your doc's recommendations), but you have to watch out for infections, specifically colds, flu, or other.
We traveled to the Philippines during her first month of induction (dex only).
We cleaned the house that we stayed at with heavy doses of Lysol, all touchable surfaces twice a week. Made everyone that was visiting use hand cleaner and wear paper booties if they came in the house. Janet wore a mask anytime she was in public and especially while on a plane!
Her anima was very bad so we didn't spend much time out during our excursions. We did lots of short excursions but she couldn't stand on her feet for more than about 30 minutes at a time.
By the time we got home, the dex had arrested further progression based on her LDH numbers returning to normal and her hemoglobin rising from 7.8 to 9.0. AND she didn't get sick!
Best of luck!
John
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Long-distance travel soon after diagnosis?
Dear JPC and JohnBoy,
Thank you both for such good advice and helping me plan ahead.
I was quite surprised by the spike in just 2 weeks. I won't waste time getting treated.
I remember my mother (who had multiple myeloma) had shingles and I hope I will dodge that bullet, because I, too, have had the vaccine, but I will now put antivirals on my list of questions.
I will call my doc tomorrow. I don't think he has looked at my results as my next actual appointment is for the week after. He will not have seen the spike and I will seek his advice for my trip planned for this week. I have reconciled not going to Japan, but really want to take this trip to Chicago leaving Tuesday.
To hear from folks with all this experience in dealing with these issues helps a lot. Thanks again for your time and care in responding.
Thank you both for such good advice and helping me plan ahead.
I was quite surprised by the spike in just 2 weeks. I won't waste time getting treated.
I remember my mother (who had multiple myeloma) had shingles and I hope I will dodge that bullet, because I, too, have had the vaccine, but I will now put antivirals on my list of questions.
I will call my doc tomorrow. I don't think he has looked at my results as my next actual appointment is for the week after. He will not have seen the spike and I will seek his advice for my trip planned for this week. I have reconciled not going to Japan, but really want to take this trip to Chicago leaving Tuesday.
To hear from folks with all this experience in dealing with these issues helps a lot. Thanks again for your time and care in responding.
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MJH - Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 67
Re: Long-distance travel soon after diagnosis?
MJH,
Again, best of luck!
Remember, this is a marathon not a sprint! Some of the steps will take time to work their way through. Don't get discouraged, with careful management we can buy lots of time.
About the anti-virals, don't take no for an answer! ;>) The side effects are minimal and it's good insurance! He should be able to call in a prescription before your trip on Tuesday!
Take care,
John
Again, best of luck!
Remember, this is a marathon not a sprint! Some of the steps will take time to work their way through. Don't get discouraged, with careful management we can buy lots of time.
About the anti-virals, don't take no for an answer! ;>) The side effects are minimal and it's good insurance! He should be able to call in a prescription before your trip on Tuesday!
Take care,
John
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Long-distance travel soon after diagnosis?
I've done overseas travel at least once a year while undergoing the 8 months of induction therapy and three years of ongoing maintenance. I go away for a month at a time. One trip was 6 weeks between treatments.
I told my doctor that travel is my lifeline and emotional health is as important to me as my physical health, so with his blessing and my fingers crossed, I continue to travel. Just came back from Burma and am off to United Emirates, Jordan and Israel in December. I remain in complete stringent response while away and without chemo on these trips.
I told my doctor that travel is my lifeline and emotional health is as important to me as my physical health, so with his blessing and my fingers crossed, I continue to travel. Just came back from Burma and am off to United Emirates, Jordan and Israel in December. I remain in complete stringent response while away and without chemo on these trips.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Long-distance travel soon after diagnosis?
MJH-
I know that you've talked with your oncologist by now and may be in Chicago. Sorry that I didn't get back to you before now. With the timeline that you gave us for Chicago, I was going to say that you could probably do that trip, but that you would need to be very careful about using the arm with the bone lesion. Others have commented on the possibility of developing infections, especially with flying and being in crowds.
But, since you didn't have your bone marrow biopsy results back yet, it would have been unlikely that you would start treatment prior to those results being in. In addition it usually takes a week, or more, to get all of the pieces of treatment in place between insurance approving and actually getting the medications.
Once your myeloma is back under control and you possibly are either not taking any injected or infused medications, you should be able to travel again. I regularly travel out of the country with no problems for several weeks at a time. Since my regimen is Revlimid and dex, both oral, I don't have to worry about being home for my treatment.
All the best as you move forward through this new phase,
Nancy in Phila
I know that you've talked with your oncologist by now and may be in Chicago. Sorry that I didn't get back to you before now. With the timeline that you gave us for Chicago, I was going to say that you could probably do that trip, but that you would need to be very careful about using the arm with the bone lesion. Others have commented on the possibility of developing infections, especially with flying and being in crowds.
But, since you didn't have your bone marrow biopsy results back yet, it would have been unlikely that you would start treatment prior to those results being in. In addition it usually takes a week, or more, to get all of the pieces of treatment in place between insurance approving and actually getting the medications.
Once your myeloma is back under control and you possibly are either not taking any injected or infused medications, you should be able to travel again. I regularly travel out of the country with no problems for several weeks at a time. Since my regimen is Revlimid and dex, both oral, I don't have to worry about being home for my treatment.
All the best as you move forward through this new phase,
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: Long-distance travel soon after diagnosis?
Dear Nancy,
Thanks again for your reply to my posts. I am back from Chicago and have met the hem/onc team for about a day and a half this week for further evaluation and start treatment next Tuesday. I have agreed to be part of a study which I think will benefit me and future patients, hopefully. (RVD with subq Velcade)
I am guessing you can answer a couple questions for me, which I will be asking the team next week:
Do you feel better or worse on the 3rd week of the 3 week cycle with 2 weeks of meds and 1 week off? I am planning for the weeks off to feel reasonably well. Is that too optimistic?
Are the effects of the meds cumulative, and I will feel increasingly worse as I continue the treatment?
How many cycles of meds do you have to do? I am thinking they stop when your numbers improve, yes?
I don't mean to sound too naive, but now that other questions have been answered, these are the new ones that I keep thinking about.
Thanks!
Thanks again for your reply to my posts. I am back from Chicago and have met the hem/onc team for about a day and a half this week for further evaluation and start treatment next Tuesday. I have agreed to be part of a study which I think will benefit me and future patients, hopefully. (RVD with subq Velcade)
I am guessing you can answer a couple questions for me, which I will be asking the team next week:
Do you feel better or worse on the 3rd week of the 3 week cycle with 2 weeks of meds and 1 week off? I am planning for the weeks off to feel reasonably well. Is that too optimistic?
Are the effects of the meds cumulative, and I will feel increasingly worse as I continue the treatment?
How many cycles of meds do you have to do? I am thinking they stop when your numbers improve, yes?
I don't mean to sound too naive, but now that other questions have been answered, these are the new ones that I keep thinking about.
Thanks!
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MJH - Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 67
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