Hello everyone!
I have browsed the board a bit on and off in the last few months. After a recent visit with my husband's team, they suggested that we try to reach out and find other individuals that might be going through the same thing we are. We are a military family who have four kids ranging from 3-15.
Three months ago our lives were turned upside down and it was discovered that my husband has multiple myeloma. We were on our way to leaving the states for an overseas tour that we had been planning on for about a year. The month of June and July were a whirlwind as we were trying to figure out what was going on, seeing what seems like a million different doctors, and a million test.
Luckily we were stationed near family, so we have an amazing support network in place already.
This all came about from multiple sinus infections, one landing him in the hospital and another in bed for three days. During the hospital visit they just found that his iron was off, so he started iron pills for about six months. After the doctor felt the levels had evened out, he decided to take my husband off from them. When he got sick in December 2016, he didn't see his regular provider, so he followed up with him in January. At this time, the doctor did some blood panels and they didn't look right. He wanted a redraw a few weeks later.
For some reason my husband decided that he was going to push this off as long as possible. Which is how he got cleared for travel to our overseas duty station. At some point the doctor had managed to get him to get the blood panels redrawn, which came back with some results that his doctor didn't like. This of course started the process of going to see the oncologist.
Due to our upcoming move, they got us in as fast as possible. This brings us to May. A year after he got sick the first time. At this appointment, it was pretty basic, just a blood draw and talking to the doctor. My husband, being the man that he is, didn't think too much of it, and at that time brushed it off.
Eight days later, results were published to his online chart. I looked. I probably shouldn't have, and I started googling. Big mistake. The next day, unknown to me, my husband went to the doctor and got the results. The good news, it hasn't started attacking his organs, and he only has one lesion that may or may not be from this.
We are making do, trying to deal with the new normal. Trying to stay positive. There are days that are worst than other. The difficult part is how to function as normal as possible with young kids. I am used to being mom and dad, but now I am caretaker too when he's having a rough day. We still have our children in their activities, which I could say I am a glutton for punishment, as there are days I still don't know how I manage it all.
All in all, I'm just looking forward to sharing experiences and learning from others here, especially those in a similar situation and raising kids.
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6 posts
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cm23 - Name: CM23
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 35
Re: Newly diagnosed at the age of 35 with four children
My husband was diagnosed with multiple myeloma about a year and a half ago, and no treatments so far have achieved remission. Most bring a lower M-spike for a few months, then quit working. He's on Darzalex right now, M-spike 0.8 g/dL (8 g/l), rising slightly every month. He fractured his femur in early June due to a tumor, and it has barely begun to heal this last month with the addition of a bone stimulator. He has been off work all that time, so our finances are a concern.
We are a lot older than you and your husband, but we still have the youngest two of our nine children at home, both teenagers. I know what you mean about trying to keep things as normal as possible for them. I don't have any ideas for you, but you have my sympathy and will be in my prayers. I can only say that as time goes on it does get easier; it becomes a "new normal", or at least that has been true for us.
We are a lot older than you and your husband, but we still have the youngest two of our nine children at home, both teenagers. I know what you mean about trying to keep things as normal as possible for them. I don't have any ideas for you, but you have my sympathy and will be in my prayers. I can only say that as time goes on it does get easier; it becomes a "new normal", or at least that has been true for us.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Newly diagnosed at the age of 35 with four children
CM23-
It's unclear whether you actually have gone to your overseas assignment or are still in the States. No matter where you are, I suggest that your husband, or you, push for the military to send him to a hematologist / oncologist who specializes in myeloma. The fact that your husband has iron abnormalities and a bone lesion is concerning. If your husband is anemic, then this along with the lesion would put him in the active multiple myeloma category. Has he had any of the testing done to diagnose myeloma?
If your husband has active multiple myeloma, it is important for him to start treatment. Being anemic, low iron level, and having bone lesions are 2 of the signs that myeloma is active. The current treatments don't necessarily mean that your husband won't be able to do his job in the military, whatever that is. I worked full time after I was diagnosed except for when I took medical leave for a broken arm and then later for my stem cell transplant. I also suggest that you go to medical appointments with your husband. It sounds like he might not be telling you what is really going on.
Most important of all to you and your children is you need to try to get your husband to talk with you about what is going on with him. If he has myeloma and is sweeping it under the carpet rather than dealing with it, he could end up in a health crisis that could be avoided.
All the best to you as you and your husband begin this new part of your life,
Nancy in Phila
It's unclear whether you actually have gone to your overseas assignment or are still in the States. No matter where you are, I suggest that your husband, or you, push for the military to send him to a hematologist / oncologist who specializes in myeloma. The fact that your husband has iron abnormalities and a bone lesion is concerning. If your husband is anemic, then this along with the lesion would put him in the active multiple myeloma category. Has he had any of the testing done to diagnose myeloma?
If your husband has active multiple myeloma, it is important for him to start treatment. Being anemic, low iron level, and having bone lesions are 2 of the signs that myeloma is active. The current treatments don't necessarily mean that your husband won't be able to do his job in the military, whatever that is. I worked full time after I was diagnosed except for when I took medical leave for a broken arm and then later for my stem cell transplant. I also suggest that you go to medical appointments with your husband. It sounds like he might not be telling you what is really going on.
Most important of all to you and your children is you need to try to get your husband to talk with you about what is going on with him. If he has myeloma and is sweeping it under the carpet rather than dealing with it, he could end up in a health crisis that could be avoided.
All the best to you as you and your husband begin this new part of your life,
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
Re: Newly diagnosed at the age of 35 with four children
I do agree with Nancy on all counts.
I was getting vague replies from my husband about his appointments, but when I could see for myself that his first regimen of medications was not working, I started going with him so I could ask my own questions and listen for myself to what the doctor said. My husband was fine about my going with him and has been grateful in the long run, because I think of questions he doesn't and sometimes remember something he didn't from the conversation. It has been good for my peace of mind because I know there's nothing going on that I don't know about.
By the way, my husband had active myeloma when diagnosed and worked nearly full-time (missing work for treatment infusion days) until his thigh fracture in June. He is anxious for it to heal so he can go back to work. (So am I.) So be reassured that a diagnosis of myeloma does not necessarily mean the end of his working.
I was getting vague replies from my husband about his appointments, but when I could see for myself that his first regimen of medications was not working, I started going with him so I could ask my own questions and listen for myself to what the doctor said. My husband was fine about my going with him and has been grateful in the long run, because I think of questions he doesn't and sometimes remember something he didn't from the conversation. It has been good for my peace of mind because I know there's nothing going on that I don't know about.
By the way, my husband had active myeloma when diagnosed and worked nearly full-time (missing work for treatment infusion days) until his thigh fracture in June. He is anxious for it to heal so he can go back to work. (So am I.) So be reassured that a diagnosis of myeloma does not necessarily mean the end of his working.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Newly diagnosed at the age of 35 with four children
I apologize for not clarifying earlier. We have not gone on the assignment, and he has already been receiving treatment for multiple myeloma. He will start cycle 3 out of 4 of Zovirax (acyclovir) Kyprolis, and dexamethasone next week, and will go for a stem cell transplant in November-December.
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cm23 - Name: CM23
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 35
Re: Newly diagnosed at the age of 35 with four children
Interesting that my multiple myeloma journey started with sinus infections as well. Had a tissue mass in my nasopharynx that was cancer (extramedullary plasmacytoma). More and more tests led to being treated for multiple myeloma.
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OneSwtWld34 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 2017
- Age at diagnosis: 36
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