Hi CathyAnn, I love using Dropbox too, but Evernote is much more flexible for keeping track of medical information and being able to SEARCH for specific information.
I have several stacks of notebooks. One of the stacks is Medical and contains several notebooks:
- My contacts (each note in notebook covers a different group of contacts)
- My Medications (including one note which lists current medications)
- Non-Cancer Medical History
- Cancer Medical History
In the Cancer notebook, some of my note titles are:
- Bone Marrow biopsies *
- Echocardiograms *
- Skeletal Surveys *
- CT Scans *
- Diary of Hematologist Appointments **
- Diary of Renal Health Clinic Appointments **
* I scan the test results to create pdf files which I attach to the note along with the date of the each biopsy and some commentary. Each note can have as many pdfs as you want.
** Date and brief summary of what was discussed
It is easy to link one note to another note. For example, if the discussion with my hematologist is about my latest skeletal survey, I go the listing of all my Cancer note titles, right-click on the Skeletal Survey note title and select "copy note link". Then I go my Hematologist Appointments note and paste the link into the diary note.
Another way to group information is to create tags. You can have several different tags for each note. You can also search by tag name.
If you use the free version of Evernote, please note that notes are not viewable on mobile devices which are offline.
Forums
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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
Hi Joe,
When I was first diagnosed I was somewhat confused too. What I did was to write my questions down on a piece of paper as they occurred to me. Then, just before I was to go to my appointment with my doctor, I read all my questions over, edited them and rewrote them, placed them in a logical order. Then I made another copy of my questions, leaving plenty of space between questions.
I gave my doctor my list of questions and, as he answered them, I took notes in the blank spaces of my copy of the questions.
The doctor really appreciated being given a written list.
When I was first diagnosed I was somewhat confused too. What I did was to write my questions down on a piece of paper as they occurred to me. Then, just before I was to go to my appointment with my doctor, I read all my questions over, edited them and rewrote them, placed them in a logical order. Then I made another copy of my questions, leaving plenty of space between questions.
I gave my doctor my list of questions and, as he answered them, I took notes in the blank spaces of my copy of the questions.
The doctor really appreciated being given a written list.
-
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
cdnirene,
Thanks for your buddy link, and for the advice on keeping notes, I can only hope to be as organized as you are. You're a wealth of knowledge.
Thanks for your buddy link, and for the advice on keeping notes, I can only hope to be as organized as you are. You're a wealth of knowledge.
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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
Thanks, Irene. This is really helpful. I have Evernote Premium so I really should take advantage of all the features. I just went in and realize that I already started a notebook. But I need to get it better organized and figure out how to use the tags to make things easier to find.
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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
SandraFaith-
This is an excellent forum to ask your questions and learn a lot about myeloma and all of the available treatment regimens and about the research that is ongoing. You are currently in one of the scariest times in the diagnosis of myeloma - the beginning.
The treatment that you will be getting initially isn't at all like the chemo treatment that I'm sure you know about from people who have solid tumors, e.g., breast cancer, lung cancer, etc. Usually you can go about your life almost like you did prior to the myeloma diagnosis. Most people have minimal side effects from the drugs and don't lose their hair. In fact, I worked all through my initial (induction) treatment as a physical therapist except for when I progressed to active myeloma from smoldering and experienced a broken arm. I was out of work for 12 weeks. Then I was out of work for another 12 weeks 6 months later for my stem cell transplant. My induction treatment was with Revlimid and dexamethasone.
My suggestions to you are that you make sure that your treating oncologist has treated a large number of people with myeloma. If s/he hasn't, then you want to make sure that the oncologist is consulting with a myeloma specialist about your treatment. This may mean you going to see the specialist for a second opinion and requesting that that person coordinate your care with your local oncologist. This is done all of the time and the specialists are happy to do it.
The other suggestion is that you find a myeloma support group in your area. You will learn a lot from the other participants who will be people who have been living with myeloma for a long time and others who are new to the game like you are. Then, let your friends know that you have myeloma and explain to them that it isn't melanoma. You will want their support and help at various times during your journey with myeloma. If there is a family member who is near, and dear, to you who can be a support for you make sure that they are informed and a willing participant in your journey.
I also live alone with my only relative living over 1000 miles away. She has come to stay with me when I have been in my major crises. Other times my friends, neighbors and work colleagues have been a great support in checking in on me when they don't hear from me and in providing groceries, meals, rides, company, etc. as needed.
Also, and this can be one of the scariest parts of living with a cancer, or other chronic condition, make sure that your legal documents are done, e.g., living will, medical and other power of attorney, advanced directives, will, etc. Do them now because if there should be a medical crisis you want someone to be in charge of letting the doctors know what your wishes are if you can't and to make medical decisions according to your wishes. Since you live alone, this is particularly important. And, then, make sure that these documents, especially the medical ones, are in your chart at your various doctor's offices and are easily found if there is an emergency that sends you to the hospital.
Take your advanced directive with you any time that you go to the ER when you might be admitted and when you are admitted to the hospital for any procedure. Not to scare you, but it helps. I've only needed to provide my advanced directive 2 times since being diagnosed 8 years ago - for my transplant admission and for a short admission for something else in 2015. I've also been very clear from the beginning with my oncologist what type of treatment I absolutely will not consider.
Anything you find on the Internet that has been written prior to 2013 is really old in the myeloma world. Just in 2015 there were 4 new myeloma drugs approved. So, the available options are growing for treatment.
You are not alone in this process. We are all here for you. Take a deep breath and know that you are supported, loved and will likely do ok living with this disease.
Nancy in Phila
This is an excellent forum to ask your questions and learn a lot about myeloma and all of the available treatment regimens and about the research that is ongoing. You are currently in one of the scariest times in the diagnosis of myeloma - the beginning.
The treatment that you will be getting initially isn't at all like the chemo treatment that I'm sure you know about from people who have solid tumors, e.g., breast cancer, lung cancer, etc. Usually you can go about your life almost like you did prior to the myeloma diagnosis. Most people have minimal side effects from the drugs and don't lose their hair. In fact, I worked all through my initial (induction) treatment as a physical therapist except for when I progressed to active myeloma from smoldering and experienced a broken arm. I was out of work for 12 weeks. Then I was out of work for another 12 weeks 6 months later for my stem cell transplant. My induction treatment was with Revlimid and dexamethasone.
My suggestions to you are that you make sure that your treating oncologist has treated a large number of people with myeloma. If s/he hasn't, then you want to make sure that the oncologist is consulting with a myeloma specialist about your treatment. This may mean you going to see the specialist for a second opinion and requesting that that person coordinate your care with your local oncologist. This is done all of the time and the specialists are happy to do it.
The other suggestion is that you find a myeloma support group in your area. You will learn a lot from the other participants who will be people who have been living with myeloma for a long time and others who are new to the game like you are. Then, let your friends know that you have myeloma and explain to them that it isn't melanoma. You will want their support and help at various times during your journey with myeloma. If there is a family member who is near, and dear, to you who can be a support for you make sure that they are informed and a willing participant in your journey.
I also live alone with my only relative living over 1000 miles away. She has come to stay with me when I have been in my major crises. Other times my friends, neighbors and work colleagues have been a great support in checking in on me when they don't hear from me and in providing groceries, meals, rides, company, etc. as needed.
Also, and this can be one of the scariest parts of living with a cancer, or other chronic condition, make sure that your legal documents are done, e.g., living will, medical and other power of attorney, advanced directives, will, etc. Do them now because if there should be a medical crisis you want someone to be in charge of letting the doctors know what your wishes are if you can't and to make medical decisions according to your wishes. Since you live alone, this is particularly important. And, then, make sure that these documents, especially the medical ones, are in your chart at your various doctor's offices and are easily found if there is an emergency that sends you to the hospital.
Take your advanced directive with you any time that you go to the ER when you might be admitted and when you are admitted to the hospital for any procedure. Not to scare you, but it helps. I've only needed to provide my advanced directive 2 times since being diagnosed 8 years ago - for my transplant admission and for a short admission for something else in 2015. I've also been very clear from the beginning with my oncologist what type of treatment I absolutely will not consider.
Anything you find on the Internet that has been written prior to 2013 is really old in the myeloma world. Just in 2015 there were 4 new myeloma drugs approved. So, the available options are growing for treatment.
You are not alone in this process. We are all here for you. Take a deep breath and know that you are supported, loved and will likely do ok living with this disease.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: My story - diagnosed in ER after pain in side
Hi!
Here are some of my numbers. Can anyone tell me what they mean?
IgG, serum: 2760 mg/dL 700-1400 completed H 01/15/2016
Kappa free light chains: 11.00 mg/dL 0.33-1.94 completed H 01/15/2016
Free lambda light chains (mg/L): 13.7 mg/L (Units converted). See lab report for original value. completed Not applicable 01/15/2016
Here are some of my numbers. Can anyone tell me what they mean?
IgG, serum: 2760 mg/dL 700-1400 completed H 01/15/2016
Kappa free light chains: 11.00 mg/dL 0.33-1.94 completed H 01/15/2016
Free lambda light chains (mg/L): 13.7 mg/L (Units converted). See lab report for original value. completed Not applicable 01/15/2016
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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
Hi Sandra,
Given the lab results you've posted, it looks like you have what is called "IgG kappa" multiple myeloma. This is multiple myeloma which leads to higher-than-normal levels of your IgG immunoglobulin and of your kappa free light chains.
When you are treating your multiple myeloma, the level of your IgG and your kappa free light chains will start to come down back toward the normal region. Ideally, you would get both measures back into the normal region.
To track your response to treatment, you'll want to focus on your kappa free light chains and your "M-spike", which measures how much "bad" IgG you have. You should be able to find your M-spike on "serum protein electrophoresis" (SPEP) test. The M-spike will be labeled "M-spike", "Abnormal protein band 1", "monoclonal protein", "paraprotein", or something similar.
In your case, I'm guessing your M-spike is between 1.5 and 2.0 g/dL.
There are other labs you'll eventually want to start following. But your M-spike and kappa free light chain level are the key labs you'll want to look at first.
Good luck!
Given the lab results you've posted, it looks like you have what is called "IgG kappa" multiple myeloma. This is multiple myeloma which leads to higher-than-normal levels of your IgG immunoglobulin and of your kappa free light chains.
When you are treating your multiple myeloma, the level of your IgG and your kappa free light chains will start to come down back toward the normal region. Ideally, you would get both measures back into the normal region.
To track your response to treatment, you'll want to focus on your kappa free light chains and your "M-spike", which measures how much "bad" IgG you have. You should be able to find your M-spike on "serum protein electrophoresis" (SPEP) test. The M-spike will be labeled "M-spike", "Abnormal protein band 1", "monoclonal protein", "paraprotein", or something similar.
In your case, I'm guessing your M-spike is between 1.5 and 2.0 g/dL.
There are other labs you'll eventually want to start following. But your M-spike and kappa free light chain level are the key labs you'll want to look at first.
Good luck!
-
JimNY
Re: My story - diagnosed in ER after pain in side
Thank you so much, JimNY. All of this is so confusing.
-
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 know what you mean, Sandra. Just take your time and don't try to do too much at once.
As I said, you want to focus first on your M-spike and your free light chain levels (especially your kappa level, but also watch your kappa/lambda ratio, which is just your kappa level divided by your lambda level). You can learn more about other lab results later.
If you haven't done it already, start a notebook or folder where you keep all your lab results. This will be helpful when questions come up later about what sort of results you had earlier.
There are a lot of helpful people here in the forum. If you spend just a little time here regularly, you'll learn something new almost every time.
Good luck!
As I said, you want to focus first on your M-spike and your free light chain levels (especially your kappa level, but also watch your kappa/lambda ratio, which is just your kappa level divided by your lambda level). You can learn more about other lab results later.
If you haven't done it already, start a notebook or folder where you keep all your lab results. This will be helpful when questions come up later about what sort of results you had earlier.
There are a lot of helpful people here in the forum. If you spend just a little time here regularly, you'll learn something new almost every time.
Good luck!
-
JimNY
Re: My story - diagnosed in ER after pain in side
Welcome Sandra to the Beacon and the multiple myeloma community.
I am so sorry that you are facing such a trmendous journey after losing your husband. I pray that there is someone out there to provide the help, comfort and support you will need.
The Beacon staff and contributors have been so valuable to us as we read the articles, columns and news virtually every day. There is so much information at your fingertips when you have access to the Beacon. If you have questions or concerns, there is always someone with sound advice and answers. There will be a lot of decisions you will make along your journey, but do not think you have to make those decisions in a vacuum. Submit your questions to this forum and I will guarantee you will see the issue from multiple perspectives.
I wish you well as you go through treatment and I pray that you will get the best results possible.
I am so sorry that you are facing such a trmendous journey after losing your husband. I pray that there is someone out there to provide the help, comfort and support you will need.
The Beacon staff and contributors have been so valuable to us as we read the articles, columns and news virtually every day. There is so much information at your fingertips when you have access to the Beacon. If you have questions or concerns, there is always someone with sound advice and answers. There will be a lot of decisions you will make along your journey, but do not think you have to make those decisions in a vacuum. Submit your questions to this forum and I will guarantee you will see the issue from multiple perspectives.
I wish you well as you go through treatment and I pray that you will get the best results possible.
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
22 posts
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