Hi Katie,
My name is Kimberly and I was diagnosed with Multiple Myeloma July 4, 2009, I was 43 years old. I have had radiation, chemotherapy, 2 bone marrow transplants (last one April 2010). I'm currently undergoing Zometa & IGG Infusions. I can't tell you not to be scared, because any diagnosis of cancer can be very scary for the patient and the family members. I do agree with the other members that you need an oncologist who specializes in Multiple Myeloma, one that you are comfortable with. He or She will be the one you rely on for test results, treatments, etc. The specialist also has a staff of nurses (who will become like family members) giving you another outlet for questions, treatments and side effects. . There are some wonderful treatments these days that make Multiple Myeloma manageable and the patient can live a normal life.
My husband was my main caregiver and we signed a medical power of attorney, so he could make decisions if I were unable to (something to think about). My husband had to give me shots, cook for me, give me daily medications, etc. The caregiver plays a vital role in the daily needs of the patient. Make sure that you ask for a copy of lab results and anything else you want a copy of and create a binder to put it all in. Ask your doctor and/or nurses to explain the results at every visit, never be afraid to ask your doctor and nurses questions.
Most important keep the faith and be very positive. It was important for me to remain positive for my own mental health as well as my caregiver, and other family members. If your family members offer to help for anything, take it - it gives the family member an outlet to help support you. Being a member of the Myeloma Beacon is full of caring members who are willing to give you advice and suggestions. Good Luck Karen, I will keep you and your husband in my prayers.
Forums
Re: Help
Hi Katie,
I'm glad you got so many suggestions here. Please keep us posted on how your husband is going and any additional questions you may have. We are very interested in knowing how things are doing, and it's also good for everyone to know the kind of questions that come up.
Good luck!
R
I'm glad you got so many suggestions here. Please keep us posted on how your husband is going and any additional questions you may have. We are very interested in knowing how things are doing, and it's also good for everyone to know the kind of questions that come up.
Good luck!
R
Re: Help
Hi Katie-
I am another young patient. I was diagnosed at 28, and I'm now 36. In general, I've had a good quality of life in those intervening years - gone to grad school, worked, dated. Even though I'm now back in treatment, many doctors are encouraging me to think of multiple myeloma as a chronic illness.
What I can tell you is that the drug research is moving very quickly. Many new and more powerful drugs are on their way. As a young person, it's been my strategy to "patchwork" my treatment - do a stem cell transplant to get me some drug-free years before then next great drug comes out. My first transplant regimen got me 4 1/2 years of remission. I'm currently in recovery from another, which will hopefully get me more drug-free years (while waiting for medicine to continue to advance and newer therapies to become available).
The internet is a scary and useful tool. Use it wisely. When I look at depressing data, I remind myself that I am not in the population tested...too young! Your husband is also too young to be captured effectively. I still read the data to inform myself, but sparingly and only when I am making a new decision about treatment.
There are some great groups that can help you educate yourself in this whole new area you never wanted to know so much about. The MMRF (Multiple Myeloma Research Foundation) is a great resource. They do seminar events throughout the U.S. to educate patients. The Leukemia & Lymphoma Society also includes multiple myeloma, so they will have information and programs for you. You may have some patient groups in your regional area (we have one here in the SF Bay Area that has been a great information clearinghouse).
Find your husband a good multiple myeloma specialist - being an oncologist or hematologist is not enough, if they don't have multiple myeloma patients or experience with multiple myeloma.
Best of luck to your family,
Laura
p.s. - I have a friend whose youngest was 2 months old when he was diagnosed. Six or so years later, he is still an active father....and life and parenthood has continued. It might not look exactly the same - but nothing is ever the same for any of us. You will find a "new normal."
I am another young patient. I was diagnosed at 28, and I'm now 36. In general, I've had a good quality of life in those intervening years - gone to grad school, worked, dated. Even though I'm now back in treatment, many doctors are encouraging me to think of multiple myeloma as a chronic illness.
What I can tell you is that the drug research is moving very quickly. Many new and more powerful drugs are on their way. As a young person, it's been my strategy to "patchwork" my treatment - do a stem cell transplant to get me some drug-free years before then next great drug comes out. My first transplant regimen got me 4 1/2 years of remission. I'm currently in recovery from another, which will hopefully get me more drug-free years (while waiting for medicine to continue to advance and newer therapies to become available).
The internet is a scary and useful tool. Use it wisely. When I look at depressing data, I remind myself that I am not in the population tested...too young! Your husband is also too young to be captured effectively. I still read the data to inform myself, but sparingly and only when I am making a new decision about treatment.
There are some great groups that can help you educate yourself in this whole new area you never wanted to know so much about. The MMRF (Multiple Myeloma Research Foundation) is a great resource. They do seminar events throughout the U.S. to educate patients. The Leukemia & Lymphoma Society also includes multiple myeloma, so they will have information and programs for you. You may have some patient groups in your regional area (we have one here in the SF Bay Area that has been a great information clearinghouse).
Find your husband a good multiple myeloma specialist - being an oncologist or hematologist is not enough, if they don't have multiple myeloma patients or experience with multiple myeloma.
Best of luck to your family,
Laura
p.s. - I have a friend whose youngest was 2 months old when he was diagnosed. Six or so years later, he is still an active father....and life and parenthood has continued. It might not look exactly the same - but nothing is ever the same for any of us. You will find a "new normal."
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lwilson - Name: Laura
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2003
- Age at diagnosis: 28
Re: Help
A big thank you to all you wonderful, inspiring people that have cared enough about a stranger to post a response to my message. I am so thankful that the good Lord has steered me in your direction. My husband is doing wonderful. He is still on the same meds as before. His pain has gone away. He is back at work and is also feeling well enough to coach my son's baseball team at a weekend tournament a couple of hours away from our home town. He recently had bloodwork and his levels are all in the normal range where as before his hbg levels were low and his white blood cells were also low. We are planning to go to MD anderson in the coming month for a second opinion. My husband is staying positive and is optomistic about the future and because of all of you, so am I. Yes, this is something that we will all have to deal with, but i guess it could always be much worse. So for this I guess I am grateful. I am trying to stay focused on today. My husband is here today. He is relatively healthy and he is happy. No one knows about tomorrow but I do know that I am going to enjoy every minute of today. God willing, my husband is going to be around to dance with our daughter at her 15th birthday celebration. This I have to believe!!
My prayers and thoughs are with you all !!
My prayers and thoughs are with you all !!
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katiemcastellanos
Re: Help
Katie: One thing to remember.....we aren't strangers, we're just friends that you haven't met!!
Good luck at MDA! Keep that optimistic outlook, it isn't always easy, but it really makes you feel better ....about your honey and yourself!
Sarah
Good luck at MDA! Keep that optimistic outlook, it isn't always easy, but it really makes you feel better ....about your honey and yourself!
Sarah
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Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: Help
Hi Katie,
It is so good to witness a positive attitude! One thing I like to share with my friends and family is: "Today.....is a Good day!" They do not always get it but the ones that know me and my past with multiple myeloma, they get it. I am glad to see that you are having some "Good" days! Our positive thoughts and prayers are still with you, your husband and your family!
Ted
multiple myeloma 2002/UAMS/MIRT
It is so good to witness a positive attitude! One thing I like to share with my friends and family is: "Today.....is a Good day!" They do not always get it but the ones that know me and my past with multiple myeloma, they get it. I am glad to see that you are having some "Good" days! Our positive thoughts and prayers are still with you, your husband and your family!
Ted
multiple myeloma 2002/UAMS/MIRT
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Ted
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