Hi,
I'm Sandra, and I went to the local ER for pain in my left side. The ER doctor didn't feel that I really should have come into the ER for my pain, but thankfully he did do a CT scan, and while I lay there on the table, I prayed that whatever was wrong, that they would find it. A short while after returning from the scan, the doctor returned, saying he could not find the cause of the pain in my side, but he did find that I had multiple lesions on my spine, and he felt as though it was cancer, that had spread from some other part of my body.
So here I was in the ER alone and the doctor telling me I have cancer! He scared me to death. Needless to say, I had to call my cousin to come pick me up. He did refer me to a cancer specialist, whom I have seen and I have multiple myeloma. I start treatment the 29 of February.
I'm not really sure what to expect. I recently lost my husband, Christmas day 2014. I am really feeling lost and alone without him. I know it's not going to be easy, but if any of you have any advice as to what to expect, please let me know.
Thank you all.
Forums
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sandrafaith - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 18, 2016
- Age at diagnosis: 53
Re: My story - diagnosed in ER after pain in side
I am sorry to hear that you have lost your husband and have also been diagnosed with multiple myeloma. It is very hard to explain what to expect, as myeloma is very much an individual disease where which stage a person is at is less important than other factors in predicting prognoses.
Keep in mind there are forum members alive and relatively well at the 10 to 15 year marks after original diagnosis, Survival rates for the 10-year mark will likely increase due to novel medications which have come out in the last while.
Keep in mind there are forum members alive and relatively well at the 10 to 15 year marks after original diagnosis, Survival rates for the 10-year mark will likely increase due to novel medications which have come out in the last while.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story - diagnosed in ER after pain in side
Hi Sandra,
Welcome to the forum. So sorry that you have to be here, especially after recently losing your husband.
There are many people here who will be very supportive of you as you continue on your journey dealing with multiple myeloma. The bad news is you have myeloma. The good news is there are many treatment options available and, while there is no cure, it can be successfully managed.
As I'm sure others with more experience with myeloma than me will stress, be sure to see an oncologist who specializes in myeloma. If you say where you live, many here will be able to give you some recommendations for where to locate such a myeloma specialist.
Good luck. Ted
Welcome to the forum. So sorry that you have to be here, especially after recently losing your husband.
There are many people here who will be very supportive of you as you continue on your journey dealing with multiple myeloma. The bad news is you have myeloma. The good news is there are many treatment options available and, while there is no cure, it can be successfully managed.
As I'm sure others with more experience with myeloma than me will stress, be sure to see an oncologist who specializes in myeloma. If you say where you live, many here will be able to give you some recommendations for where to locate such a myeloma specialist.
Good luck. Ted
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Ted Kan - Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 75
Re: My story - diagnosed in ER after pain in side
Hi Sandra,
I am very sorry for the reason you are here, but welcome to the site. I am also very recently diagnosed with myeloma (November 2015), but I have received a lot of support and learned a great deal about this disease on these forums since I made my way here in January.
Are you seeing a myeloma specialist? Myeloma is a very complicated cancer, and as Ted mentioned, your best bet is to be treated by a physician specializing in myeloma ... or at least one that sees a lot of myeloma patients. I believe you live in the U.S. (I live in Canada), but other participants on this site can direct you to the myeloma specialists closest to you if you aren't already seeing a myeloma specialist or if you would like a second opinion.
Dealing with myeloma is a lifelong marathon (hopefully, a very, very long marathon), so it is important to be with the best and most comfortable physician for you as it will be a long relationship.
Wishing you all the best on this journey.
Karen
I am very sorry for the reason you are here, but welcome to the site. I am also very recently diagnosed with myeloma (November 2015), but I have received a lot of support and learned a great deal about this disease on these forums since I made my way here in January.
Are you seeing a myeloma specialist? Myeloma is a very complicated cancer, and as Ted mentioned, your best bet is to be treated by a physician specializing in myeloma ... or at least one that sees a lot of myeloma patients. I believe you live in the U.S. (I live in Canada), but other participants on this site can direct you to the myeloma specialists closest to you if you aren't already seeing a myeloma specialist or if you would like a second opinion.
Dealing with myeloma is a lifelong marathon (hopefully, a very, very long marathon), so it is important to be with the best and most comfortable physician for you as it will be a long relationship.
Wishing you all the best on this journey.
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: My story - diagnosed in ER after pain in side
Sandra,
I am sorry for your loss and diagnosis. My husband was diagnosed with myeloma in December of 2015, so we are just at the beginning as well.
The first thing our myeloma specialist at Sarah Cannon Blood cancer center in Nashville, Tennessee told us is that, although it is not curable, multiple myeloma is very treatable. They have come such a long way in the past few years with treatments for myeloma. If you do any research, make sure you are reading recent data and not old articles. When my husband was first diagnosed, I started research and did not make sure of my dates of info and some of the older stuff scared me to death! Look at dates of publication ... before reading.
I had breast cancer 11 years ago and my sweet husband was my rock. Now our roles are reversed. We can say with confidence we know how the other feels in both roles because we have played both parts.
You have found a great place here. I have found it so helpful and has given me much needed support.
Good luck and God bless. My husband was in near kidney failure at the beginning, but after his first cycle of cyclophosphamide, Velcade, and dexamethasone (CyBorD), his renal function is back to normal, bone pain gone, and myeloma markers back to normal. Treatment works ... but I do agree with everyone ... you need a myeloma specialist.
I am sorry for your loss and diagnosis. My husband was diagnosed with myeloma in December of 2015, so we are just at the beginning as well.
The first thing our myeloma specialist at Sarah Cannon Blood cancer center in Nashville, Tennessee told us is that, although it is not curable, multiple myeloma is very treatable. They have come such a long way in the past few years with treatments for myeloma. If you do any research, make sure you are reading recent data and not old articles. When my husband was first diagnosed, I started research and did not make sure of my dates of info and some of the older stuff scared me to death! Look at dates of publication ... before reading.
I had breast cancer 11 years ago and my sweet husband was my rock. Now our roles are reversed. We can say with confidence we know how the other feels in both roles because we have played both parts.
You have found a great place here. I have found it so helpful and has given me much needed support.
Good luck and God bless. My husband was in near kidney failure at the beginning, but after his first cycle of cyclophosphamide, Velcade, and dexamethasone (CyBorD), his renal function is back to normal, bone pain gone, and myeloma markers back to normal. Treatment works ... but I do agree with everyone ... you need a myeloma specialist.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: My story - diagnosed in ER after pain in side
Thank you everyone for your comments. Everything helps. I am seeing Dr. LoCicero; he is out of the Long Street Cancer Institute. And my stem cell transplant will be done at the Winship Cancer Center out of Emory University Hospital in Atlanta.
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sandrafaith - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 18, 2016
- Age at diagnosis: 53
Re: My story - diagnosed in ER after pain in side
Sandra, I notice the Longstreet Clinic has a Buddy Program (link)
I'm doing my myeloma journey alone too. Because of that, I focused on the practical aspects of my diagnosis first – the stuff that was within my control, rather than the stuff that wasn't. For example, I researched all the cancer-related resources that were available to me. This included a Drivers Ride program, a monthly myeloma support group, access to a free wig if I needed one, dietitian, patient counselling, etc.
I made my home patient-friendly as side effects of treatment began to surface. I also figured out ways to make my life easier such as shopping online.
I keep medical information well organized in a big binder as well as in Evernote (with PDF scans of important test results). I also keep a medical diary in Evernote. It's very simple. As they happen, I'll note dates of various medical tests, drug and dosage changes, hospital stays, appointments with doctors, drug infusions, etc.. I'll usually summarize a visit with a doctor in a sentence or two. I keep an up-to-date list of my current medications in Evernote and don't destroy old lists. In other words, I don't rely on memory or assume that every doctor I see has access to my complete medical history. I learned from experience that they do not.
I also created a hospital bag filled with stuff I might want for a hospital stay. Three weeks later, I had to call 911 and it was nice just to have to ask the attendant to grab the bag for me just as I was about to be carted off to the ambulance.
I hope this helps.
I'm doing my myeloma journey alone too. Because of that, I focused on the practical aspects of my diagnosis first – the stuff that was within my control, rather than the stuff that wasn't. For example, I researched all the cancer-related resources that were available to me. This included a Drivers Ride program, a monthly myeloma support group, access to a free wig if I needed one, dietitian, patient counselling, etc.
I made my home patient-friendly as side effects of treatment began to surface. I also figured out ways to make my life easier such as shopping online.
I keep medical information well organized in a big binder as well as in Evernote (with PDF scans of important test results). I also keep a medical diary in Evernote. It's very simple. As they happen, I'll note dates of various medical tests, drug and dosage changes, hospital stays, appointments with doctors, drug infusions, etc.. I'll usually summarize a visit with a doctor in a sentence or two. I keep an up-to-date list of my current medications in Evernote and don't destroy old lists. In other words, I don't rely on memory or assume that every doctor I see has access to my complete medical history. I learned from experience that they do not.
I also created a hospital bag filled with stuff I might want for a hospital stay. Three weeks later, I had to call 911 and it was nice just to have to ask the attendant to grab the bag for me just as I was about to be carted off to the ambulance.
I hope this helps.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: My story - diagnosed in ER after pain in side
Irene, would you be willing to share more specifics of how you organize your information in Evernote? For example, do you have separate notebooks for results, do you keep the results together with the visit they are associated with, etc? I have copies of all my labs in folders in my DropBox account, but Evernote sounds like an easier way to keep track of everything plus make additional notes, etc. I use Evernote sort of inconsistently, but this sounds like a good idea.
Also, welcome to the forum. I'm new here, too, and currently not in need of treatment (smoldering) but I find it helpful to hear what others are going through and how they have handled it. I think you will, too.
Also, welcome to the forum. I'm new here, too, and currently not in need of treatment (smoldering) but I find it helpful to hear what others are going through and how they have handled it. I think you will, too.
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: My story - diagnosed in ER after pain in side
Hi,
I also have myeloma. It's hard for me to get around. I had 4 fractures of the spine and COPD. Thank God for my wife caregiver.
I am glad you can get around. Myeloma is treatable. You will be fine with treatment. There are always people on this board who will help. They know so much. I don't know anything, hard for me to understand, but I do know treatments will be found for you and you will get by. Sorry for the loss of your husband, but be strong and have faith.
I also have myeloma. It's hard for me to get around. I had 4 fractures of the spine and COPD. Thank God for my wife caregiver.
I am glad you can get around. Myeloma is treatable. You will be fine with treatment. There are always people on this board who will help. They know so much. I don't know anything, hard for me to understand, but I do know treatments will be found for you and you will get by. Sorry for the loss of your husband, but be strong and have faith.
Re: My story - diagnosed in ER after pain in side
Joe, I too have COPD, I was diagnosed with it January 2015, never smoked at all. Doctors say it was caused from second-hand smoke. I also have some problems with congestive heart failure. I am a little concerned with how all these issues will react to the meds.
I'm glad to hear you have a wonderful wife and caregiver. Thank you for your comment.
I'm glad to hear you have a wonderful wife and caregiver. Thank you for your comment.
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sandrafaith - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 18, 2016
- Age at diagnosis: 53
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