The arrival of my brother's multiple myeloma test results did not coincide with a scheduled appointment with his doctor. And, no, there was no communication about these results beyond a very brief email response to a specific question. The clinic is very busy and my brother said he is okay waiting for the IFE test results and then making an appointment for follow up.
I will post the doctor's explanation for the "no band was observed" comment included on the SPEP. I think the IFE was ordered at the same time as the rest of the multiple myeloma labs. But I dont know for sure.
Thank you for sharing your story and providing an example for what may be next steps, etc. Your information was extremely helpful and timely. We all hope your long wait for a negative IFE result is over very very soon.
Forums
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greenrobin - Who do you know with myeloma?: My brother
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 54
Re: Response to treatment - meaning for treatment plan?
Hello Greenrobin,
Your brother is very fortunate to have such a caring and thoughtful sibling. I think your last comment about your brother's labs not being available at the time of his clinic visit is important. That happened to me once, and I realized it was a waste of time for both me and my doctor. I travel 2 hours to have labs done and see my myeloma specialist, and it serves no purpose to see him if he is not holding current lab information.
I make the effort to have the blood draw and labs done about one week prior to my doctor appointment so he and I are looking at current information and can have a productive conversation regarding my disease status. I only get about 15 minutes of his time every few months so I need to make it productive. Communicating with your doctor via email is just not the same as the face to face meeting.
Wishing you and your brother all the best.
Your brother is very fortunate to have such a caring and thoughtful sibling. I think your last comment about your brother's labs not being available at the time of his clinic visit is important. That happened to me once, and I realized it was a waste of time for both me and my doctor. I travel 2 hours to have labs done and see my myeloma specialist, and it serves no purpose to see him if he is not holding current lab information.
I make the effort to have the blood draw and labs done about one week prior to my doctor appointment so he and I are looking at current information and can have a productive conversation regarding my disease status. I only get about 15 minutes of his time every few months so I need to make it productive. Communicating with your doctor via email is just not the same as the face to face meeting.
Wishing you and your brother all the best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Response to treatment - meaning for treatment plan?
Hi Multibilly, mrozdav, Dano, and most important, my sister, Greenrobin,
Yes Dano, I am so very fortunate to have a sister whom has been more than by my side through what has become one of the unfortunate experiences that I have had to encounter in the walk of life.
I have just recently awoken to the fact that I have cancer. Never really thought about it like that.
I am self employed, have been most of my life. Almost 4 months since I was told I have multiple myeloma, I have struggled with being able to keep up with the two lives I now have, Me/cancer. I know that they are both the same, but I prefer them separate for now. Tomorrow will be my 3rd week of my 4th round of therapy, and with all your input I have a few good questions for my doctor.
As of the latest, he has stated that I'm not ready for maintenance yet, and will need at least 2 more "rounds" (4 week on, one week off) of therapy before contemplating a stem cell transplant.
I thank you all for my now 4 second opinions. As I will use them all.
Waiting for the elusive IFE.
Regards to all,
Yes Dano, I am so very fortunate to have a sister whom has been more than by my side through what has become one of the unfortunate experiences that I have had to encounter in the walk of life.
I have just recently awoken to the fact that I have cancer. Never really thought about it like that.
I am self employed, have been most of my life. Almost 4 months since I was told I have multiple myeloma, I have struggled with being able to keep up with the two lives I now have, Me/cancer. I know that they are both the same, but I prefer them separate for now. Tomorrow will be my 3rd week of my 4th round of therapy, and with all your input I have a few good questions for my doctor.
As of the latest, he has stated that I'm not ready for maintenance yet, and will need at least 2 more "rounds" (4 week on, one week off) of therapy before contemplating a stem cell transplant.
I thank you all for my now 4 second opinions. As I will use them all.
Waiting for the elusive IFE.
Regards to all,
Re: Response to treatment - meaning for treatment plan?
Thanks for your common sense advice, Dano.. Makes sense for one to take more control for getting appointments when they stand to benefit all involved the most and to not just take whatever is scheduled.
Speaking of being more proactive, it has been 22 days since my brother had labs done, including the IFE. Called the pathologist who has typically provided analysis on my brothers lab results. He works at a separate hospital. He wouldn't say much other than the results were complete, but listed as pending. He commented the test typically takes 10 days and that he had never seen test results sit for so long. Suggested contacting the doctor, and hopefully my brother, who is an incredibly busy self employed guy, will find the time to try and track the results down. Otherwise, at least it feels that way, they might not be reported otherwise.
Speaking of being more proactive, it has been 22 days since my brother had labs done, including the IFE. Called the pathologist who has typically provided analysis on my brothers lab results. He works at a separate hospital. He wouldn't say much other than the results were complete, but listed as pending. He commented the test typically takes 10 days and that he had never seen test results sit for so long. Suggested contacting the doctor, and hopefully my brother, who is an incredibly busy self employed guy, will find the time to try and track the results down. Otherwise, at least it feels that way, they might not be reported otherwise.
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greenrobin - Who do you know with myeloma?: My brother
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 54
Re: Response to treatment - meaning for treatment plan?
Fourth round is over and I'm back in my corner for my week off. Test results are being posted and all seem to be decreasing in volume / number count. I guess a good thing.
Figured on my week off I'd fly to California (I live in south Florida), and spend some time with my Dad and Adra. Noticed when I got off the plane I was having a hard time walking. Feet / calves were a bit sore and the forever hurting back was a bit more worse for the wear. Once in the limo, I took off my Croc shoes. Both feet and lower legs were extremely swollen to the point I could see every stitch, seam, and even the imprint of the name Croc on the bottom of my foot. I did not wear socks, thank goodness.
Needless to say, I spent the first day with my feet in the air wearing compression socks. It took a couple of days to get that under control. Right know, I want to enjoy every minute of my visit, as I meet with my doctor next week when I start my fifth round. Many questions and answers (hopefully) will be had, as a project which will occupy quite a bit of my time over the next year and a half will be kicking off mid May.
Have to say / write just one thing before I sign off.
The one benefit with this multiple myeloma deal is the fact that I am now, and will from now on be, closer to my family than I have ever been.
R
Figured on my week off I'd fly to California (I live in south Florida), and spend some time with my Dad and Adra. Noticed when I got off the plane I was having a hard time walking. Feet / calves were a bit sore and the forever hurting back was a bit more worse for the wear. Once in the limo, I took off my Croc shoes. Both feet and lower legs were extremely swollen to the point I could see every stitch, seam, and even the imprint of the name Croc on the bottom of my foot. I did not wear socks, thank goodness.
Needless to say, I spent the first day with my feet in the air wearing compression socks. It took a couple of days to get that under control. Right know, I want to enjoy every minute of my visit, as I meet with my doctor next week when I start my fifth round. Many questions and answers (hopefully) will be had, as a project which will occupy quite a bit of my time over the next year and a half will be kicking off mid May.
Have to say / write just one thing before I sign off.
The one benefit with this multiple myeloma deal is the fact that I am now, and will from now on be, closer to my family than I have ever been.
R
Re: Response to treatment - meaning for treatment plan?
Raven-
Have a wonderful visit with your family in California. Just a suggestion: wear the compression stockings while you fly. Something with a compression rating of 8-15 mmHg might be good. Also, get up and walk every half hour, or just stand up for a couple of minutes each half hour, and/or do some simple leg exercises while you are sitting or standing in place - ankle pumps and circles, extending and bending at the knee, lifting your knee towards your chest. These will help to keep the blood and lymph moving up out of your feet and ankles.
Nancy in Phila, retired PT
Have a wonderful visit with your family in California. Just a suggestion: wear the compression stockings while you fly. Something with a compression rating of 8-15 mmHg might be good. Also, get up and walk every half hour, or just stand up for a couple of minutes each half hour, and/or do some simple leg exercises while you are sitting or standing in place - ankle pumps and circles, extending and bending at the knee, lifting your knee towards your chest. These will help to keep the blood and lymph moving up out of your feet and ankles.
Nancy in Phila, retired PT
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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: Response to treatment - meaning for treatment plan?
Hi Nancy,
Thank you for the advice. Bought the socks as well a new pair of Nike free sneakers. They are very light and have the tongue built into one side of the shoe so it won't slip to one side and bunch up. I must confess that I didn't wear the socks, but I did constantly pump my feet, move my legs around and, when we landed in Dallas with a 2 hour layover, I did a bit of walking. Swelling was kept to a minimum. Only long-lasting side effect is almost all on the plane were sick with flu / cold. Now I have flu / cold also.
Had my first week of my 5th round, Zometa,Velcade, Cyclops (they have one eye so they can see the future, unfortunately they can also see their death), dex with a Zofran for nausea kicker, yesterday. Was told I am making remarkable leaps and bounds to beat this multiple myeloma out of me. Just waiting for my IFE to come in. I'm paying physically for it by keeping all treatments as large as possible. I can deal with the nasty side effects. I meet with stem cell transplant doctor mid next week. I'm siding with having it done as soon as I can when I'm done with the 5th round.
I'm very fortunate to have doctor and nurse who are actually on my side and generally on top of what is happening. I've been just a "number" with so many others. Greenrobin might be adding to this thread with actual numbers showing how fast I've been able to knock down all my numbers.
Most of which are below standard range.
Good luck to all you multiple myeloma sisters and brothers. Keep up the spirit.
Forgot to add this one. I also have developed styes in one eye. They started 3 days ago and, with warm compresses, they have just about cleared up. Doc says most likely are a side effect of the Velcade. Told me since they are going away so fast most likely not bacterial.
And the beat goes on.
R
Thank you for the advice. Bought the socks as well a new pair of Nike free sneakers. They are very light and have the tongue built into one side of the shoe so it won't slip to one side and bunch up. I must confess that I didn't wear the socks, but I did constantly pump my feet, move my legs around and, when we landed in Dallas with a 2 hour layover, I did a bit of walking. Swelling was kept to a minimum. Only long-lasting side effect is almost all on the plane were sick with flu / cold. Now I have flu / cold also.
Had my first week of my 5th round, Zometa,Velcade, Cyclops (they have one eye so they can see the future, unfortunately they can also see their death), dex with a Zofran for nausea kicker, yesterday. Was told I am making remarkable leaps and bounds to beat this multiple myeloma out of me. Just waiting for my IFE to come in. I'm paying physically for it by keeping all treatments as large as possible. I can deal with the nasty side effects. I meet with stem cell transplant doctor mid next week. I'm siding with having it done as soon as I can when I'm done with the 5th round.
I'm very fortunate to have doctor and nurse who are actually on my side and generally on top of what is happening. I've been just a "number" with so many others. Greenrobin might be adding to this thread with actual numbers showing how fast I've been able to knock down all my numbers.
Most of which are below standard range.
Good luck to all you multiple myeloma sisters and brothers. Keep up the spirit.
Forgot to add this one. I also have developed styes in one eye. They started 3 days ago and, with warm compresses, they have just about cleared up. Doc says most likely are a side effect of the Velcade. Told me since they are going away so fast most likely not bacterial.
And the beat goes on.
R
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