My husband and I just got married on August 20, 2014... He had a tumor on his head at this time and was told there was a 95% chance it was non cancerous. So we set up a surgery date for after our wedding and really weren't too worried about it.
At the follow-up visit we were shocked to find out that the biopsy came back that it was indeed cancer. Since then, we've been to oncologists, hematologists, neurosurgeons and had countless tests and blood work only to find out 2 weeks ago that it is multiple myeloma.
He is set up to start a 13 week chemo regimen next week and started Zometa and steroids yesterday. He still has to undergo radiation to the area where the tumor was removed and he is set up to get a stem cell transplant after the chemo.
I'm only 30 years old and he is 37 and we really don't know much about this or where to turn. The doctors have seemed to be dragging their feet all this time. Should I be concerned he hasn't started his treatment yet? He isn't feeling well and has to continue to work full time (outside in the cold), as we do have a family to provide for, and I feel very bad that working takes everything out of him and he comes home and goes straight to bed.
Was wondering if anyone could tell me any info at all on what to expect throughout all of this and in desperate need of some encouragement, as this is just the beginning of a long haul and I feel super stressed already!
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Re: Newlywed cancer
Hello, I am so sorry that you have had this news, and at a time when you should be so happy.
The treatments for myeloma are good and the vast majority of patients respond well and are able to follow near-normal lives, especially if they are young and strong like your husband.
I received 6 months of treatment in 2012 and I have been with little or no treatment for the past two years. I would say, though, that during the initial treatment phase, he should be resting and avoiding heavy work. He is going to feel tired and should avoid operating machinery or driving too much. On diagnosis, I was immediately given a one-year sick certificate in order to stop working (we are in France).
I am sure everybody would wish you well and assure you that you are in good hands.
Ian (age 60).
The treatments for myeloma are good and the vast majority of patients respond well and are able to follow near-normal lives, especially if they are young and strong like your husband.
I received 6 months of treatment in 2012 and I have been with little or no treatment for the past two years. I would say, though, that during the initial treatment phase, he should be resting and avoiding heavy work. He is going to feel tired and should avoid operating machinery or driving too much. On diagnosis, I was immediately given a one-year sick certificate in order to stop working (we are in France).
I am sure everybody would wish you well and assure you that you are in good hands.
Ian (age 60).
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Ian Forsyth
Re: Newlywed cancer
Hello, Newlywed, I too am very sorry you are going through this hell when you should be enjoying your new marriage. Like Ian said, the treatments for myeloma are much better now, and your husband will be feeling better soon.
You do need to be proactive and research what your insurance covers for the transplant (travel, meals for the caregiver, etc.). Accept offers of help. Look into the copay assistance program the Leukemia & Lymphoma Society has. It could make a big difference, especially after the transplant when it will take time for him to feel well enough to go back to work. If he is not on an antidepressant, ask his oncologist about Lexapro. It is a pretty good drug. "Some" of your husband's tiredness could be from the shock of the diagnosis and some depression from facing what looks like a mountain to climb.
You will get through this and enjoy good times again. It is scary when you are facing it at the beginning. Like most families with myeloma, you will get used to your new normal. Try to stay upbeat - it helps you get through it.
I wish you both the best ... and a long remission! Take care of yourself, too.
You do need to be proactive and research what your insurance covers for the transplant (travel, meals for the caregiver, etc.). Accept offers of help. Look into the copay assistance program the Leukemia & Lymphoma Society has. It could make a big difference, especially after the transplant when it will take time for him to feel well enough to go back to work. If he is not on an antidepressant, ask his oncologist about Lexapro. It is a pretty good drug. "Some" of your husband's tiredness could be from the shock of the diagnosis and some depression from facing what looks like a mountain to climb.
You will get through this and enjoy good times again. It is scary when you are facing it at the beginning. Like most families with myeloma, you will get used to your new normal. Try to stay upbeat - it helps you get through it.
I wish you both the best ... and a long remission! Take care of yourself, too.
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MonicaS.
Re: Newlywed cancer
Dear Newlywed, My heart goes out to you and your husband. I can't imagine what a difficult time this must be for both of you.
I was diagnosed 11 months ago and I have gone thru induction therapy, and I recently had a stem cell transplant. I would honestly have to say that, in those 11 months, the most difficult time for me was the first 4 or 5 months, getting my head around the diagnosis and accepting the fact that I had multiple myeloma. Fear, frustration, anger, self pity, depression, and at times denial were all difficult for me to get under control.
I joined a local myeloma support group and found many of the answers I needed to manage my emotions. It didn't happen overnight, and at times I still deal with the mental demons.
I also made it a point to learn everything I could about myeloma and its treatment. I found a myeloma specialist and I now have a treatment team to help me manage this disease.
There are no easy answers to alleviate your initial fears and anxiety, and it will take some time to get your emotions under control. I found that once I had a treatment game plan and a competent myeloma team to help me along the way, I did feel better. Accepting the diagnosis is not easy, but it is necessary to move forward. You can't control the diagnosis, but you do have control over how you deal with it.
Your husband has the advantage of being young and healthy and statistically the response to treatment is excellent, and remission time is very good. I know you are going thru a difficult time right now, but you will get thru it.
I wish you and your new husband the very best.
I was diagnosed 11 months ago and I have gone thru induction therapy, and I recently had a stem cell transplant. I would honestly have to say that, in those 11 months, the most difficult time for me was the first 4 or 5 months, getting my head around the diagnosis and accepting the fact that I had multiple myeloma. Fear, frustration, anger, self pity, depression, and at times denial were all difficult for me to get under control.
I joined a local myeloma support group and found many of the answers I needed to manage my emotions. It didn't happen overnight, and at times I still deal with the mental demons.
I also made it a point to learn everything I could about myeloma and its treatment. I found a myeloma specialist and I now have a treatment team to help me manage this disease.
There are no easy answers to alleviate your initial fears and anxiety, and it will take some time to get your emotions under control. I found that once I had a treatment game plan and a competent myeloma team to help me along the way, I did feel better. Accepting the diagnosis is not easy, but it is necessary to move forward. You can't control the diagnosis, but you do have control over how you deal with it.
Your husband has the advantage of being young and healthy and statistically the response to treatment is excellent, and remission time is very good. I know you are going thru a difficult time right now, but you will get thru it.
I wish you and your new husband the very 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: Newlywed cancer
No time is a good time to be diagnosed with cancer, but at a time when you should be enjoying a new phase of your life together it can really be a shocker. If you haven't done so yet, get a second opinion from a myeloma specialist. It sounds like the doctors who your husband is seeing are on target for his treatment, but a specialist is always good to have on the team.
Treatment usually starts fairly quickly after diagnosis unless one is diagnosed at the MGUS or smoldering level. Then treatment usually is delayed until one of the CRAB criteria are met: C - elevated calcium, R - kidney (renal) failure, A - anemia, B - bone lesions/damage. If your husband has what is termed an extramedullary plasmacytoma (the lesion on his head) then he may not have active myeloma. Although the fact that he has been started on steroids and Zometa seems to indicate otherwise. What chemo regimen will he be starting and when?
Usually side effects from the drugs for myeloma aren't too bad. But fatigue can be one of the biggest problems, especially with the steroid crash. He will begin to feel much better once he is on the full treatment regimen. He will have some increased fatigue with the radiation to his head. If at all possible, it might be good to look into his ability to take a medical leave from work for a while until the treatment begins to have an effect on the myeloma and he is feeling better. Most of us have been able to work full time at our jobs while going through treatment with periods of medical leave to deal with various problems that may develop or, at least, during the time for the stem cell transplant.
Take a big breath, learn all that you can, and try to live as normal a life as possible. All the best to your husband, you and your children.
Nancy in Phila
Treatment usually starts fairly quickly after diagnosis unless one is diagnosed at the MGUS or smoldering level. Then treatment usually is delayed until one of the CRAB criteria are met: C - elevated calcium, R - kidney (renal) failure, A - anemia, B - bone lesions/damage. If your husband has what is termed an extramedullary plasmacytoma (the lesion on his head) then he may not have active myeloma. Although the fact that he has been started on steroids and Zometa seems to indicate otherwise. What chemo regimen will he be starting and when?
Usually side effects from the drugs for myeloma aren't too bad. But fatigue can be one of the biggest problems, especially with the steroid crash. He will begin to feel much better once he is on the full treatment regimen. He will have some increased fatigue with the radiation to his head. If at all possible, it might be good to look into his ability to take a medical leave from work for a while until the treatment begins to have an effect on the myeloma and he is feeling better. Most of us have been able to work full time at our jobs while going through treatment with periods of medical leave to deal with various problems that may develop or, at least, during the time for the stem cell transplant.
Take a big breath, learn all that you can, and try to live as normal a life as possible. All the best to your husband, you and your children.
Nancy in Phila
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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
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