Hi, my name is Ed. I was first diagnosed in February 2014. Time has gone so fast . Seems like yesterday. I had just retired and was in process of remodeling a modular home in Florida for a winter getaway from our home in Indiana when one morning I was brushing my teeth when my back hurt so bad I fell to the floor. I had never had problems with my back or not taking any pills for anything, so I am sure as many of you that it was a real shock.
I immediately flew home and saw an oncologist whom on second appointment recommended me to a myeloma specialist at the Indiana University Simon Cancer Center.
Needless to say, we panicked with the word cancer, and did not hardly know what multiple myeloma was. We also panicked financially and regretfully sold our modular in Florida, golf cart, etc, to pay off debt.
Almost immediately I started chemo and then treatments of bone strengthener and then Revlimid of different strengths. In between I had stem cells frozen for possibility of 2 future operations. Have not had a stem cell transplant at this point , For a few months after chemo my numbers were low enough not to even read. Then about 6 months ago my numbers rose back up. 5 months ago I started on Revlimid, Ninlaro, and dexamethasone treatment. The last chart looks like the Ninlaro has leveled numbers off. The worst part of treatment is taking 5 dex 3 times a month, but if it levels off numbers, I guess it is worth it.
I have worked through a lot of anxiety and depression and seem to be on the right treatment and definitely the right doctor and hospital. I also have a lot of family and friends praying and I do believe that is the most important thing of all my options and all my treatments. I can't imagine going through something like this without the belief or trust of an almighty God to lean on .
I do regret selling our place in Florida and it now would cost a lot more to replace . I do have my bad days, wishing I could do more to help financially, and honestly miss working. I am 68 and relatively healthy. Just never know when I am going to have good day or bad.
When I look around, we are blessed compared to others, and am thankful for blessings . I just have my own regrets knowing that I made some of my own mistakes and seem to be scared to take trips or vacations we've always dreamed of, or keep money to make sure of somewhat safety in future. It seems crazy both of us retired and feel like we need a vacation. I am 68 and wife is 61. My wife has retired to take care of me and she has been my rock, so I worry about things getting worse and leaving her some security.
I would assume most of you have felt some of the same fears and frustrations. Then I have also been hearing and reading of such good treatments in process of multiple myeloma, so maybe it's just me and I should be more positive, and no matter what happens God is in control.
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cartrader - Name: ed
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2014
- Age at diagnosis: 65
Re: Ed from Indiana - diagnosed in 2014
Hi Ed,
Being diagnosed with a disease you have never even heard of is a shock indeed. Then there is that dreaded "C" word as well. Please take heart. There are so many people in this group who have been treated successfully for many years. While multiple myeloma does fight back, the resources today for the medical profession are amazing.
It seems that you are in good hands medically. I also have anxiety about multiple myeloma and take Lexapro (escitalopram) at a fairly low dose, but it does help. My daughter, who is a clinical social worker, often sends me little posters and stories. My favorite one that I think is perfect for you is the following: DON'T BELIEVE EVERYTHING YOU THINK!
Prayer is a strong helper, as is talking to people with multiple myeloma and even to a professional who can help you with perspective. Please take a trip with your wife. It doesn't have to be moving far away for the winter, but even a long weekend or a week this winter in a warmer climate would be beneficial. Multiple myeloma is a disease that you can live with. Don't wait around for bad things to happen. While you are feeling pretty good (doesn't have to be perfect) take that vacation. You will not regret it.
Barbara
Being diagnosed with a disease you have never even heard of is a shock indeed. Then there is that dreaded "C" word as well. Please take heart. There are so many people in this group who have been treated successfully for many years. While multiple myeloma does fight back, the resources today for the medical profession are amazing.
It seems that you are in good hands medically. I also have anxiety about multiple myeloma and take Lexapro (escitalopram) at a fairly low dose, but it does help. My daughter, who is a clinical social worker, often sends me little posters and stories. My favorite one that I think is perfect for you is the following: DON'T BELIEVE EVERYTHING YOU THINK!
Prayer is a strong helper, as is talking to people with multiple myeloma and even to a professional who can help you with perspective. Please take a trip with your wife. It doesn't have to be moving far away for the winter, but even a long weekend or a week this winter in a warmer climate would be beneficial. Multiple myeloma is a disease that you can live with. Don't wait around for bad things to happen. While you are feeling pretty good (doesn't have to be perfect) take that vacation. You will not regret it.
Barbara
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barbaramh - Name: Barbara Hoffman
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 1/5/2015
- Age at diagnosis: 75
Re: Ed from Indiana - diagnosed in 2014
I can understand the anxiety. I hope you can find a balance between doing the things you envisioned doing when retired (when multiple myeloma was not in the picture) and being prudent because of the unknown in medical care.
I think even if you didn't have multiple myeloma, you would have to do that as we never know what can happen.
Wishing you the ability to have joy in the "now" and controlled multiple myeloma so you have many years. You are lucky you have love in your life!
I think even if you didn't have multiple myeloma, you would have to do that as we never know what can happen.
Wishing you the ability to have joy in the "now" and controlled multiple myeloma so you have many years. You are lucky you have love in your life!
Re: Ed from Indiana - diagnosed in 2014
A belated welcome to the forum, Ed. Are things continuing to go well for you on the Ninlaro, Revlimid, and dex treatment?
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