Hello,
I have been searching the Internet for information on multiple myeloma since my husband's internist said that he was 95 percent sure my husband has this.
My husband was scheduled for throat surgery and was denied because his blood work had a problem. My husband has taken NSAIDS drugs for arthritis pain and this has affected his kidneys in the past. This February 2014, my husband had complete knee replacement surgery, so I assume his blood and urine work was fine because they did the surgery. After this surgery my husband again started taken ibuprofen because the Lortab [hydrocodone, acetaminophen] did such a number on his stomach, hence the ibuprofen.
Now with the throat surgery scheduled again, his blood work showed some kidney failure (mild). He again quit the ibuprofen and kidney function improved some, but not enough, so the doctor ordered a urine test along with more blood test.
The doctor called us in his office this last Monday September 15th and shocked us with his diagnosis. My husband has none of the symptoms. He has no aches of his bones, works out at the gym on a regular basis, no fatigue, no weight loss, no loss of appetite, and never has any infections that are noticeable.
We are scheduled to see an oncologist next Wednesday. Any advice is appreciated.
I have searched the internet before finding this and what I read scared me beyond words. Please help this nervous wife.
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Re: Husband diagnosed this week - very scared
Hello Mildred,
We're sorry to hear about your husband's diagnosis, but you have come to a good place for information and support.
We understand that this is a frightening time for you and your husband. However, please don't jump to any conclusions about what your husband's diagnosis means until you understand exactly what his diagnosis is. And you won't know that until you talk more with a doctor about what your husband's lab tests say and why the diagnosis was made.
Our suggestion would be that you and your husband go next week to the appointment with the oncologist and learn why the initial diagnosis of myeloma was made -- or even if the doctors are certain that myeloma is really the right diagnosis.
Most likely, the oncologist will want to do more testing, such as x-rays, possibly some more blood tests, and a bone marrow biopsy. Those will help the oncologist determine exactly what is the correct diagnosis and also may provide information useful to determine what treatment is appropriate.
The additional thing we would suggest you do at this time is to start making arrangements to have your husband seen by a myeloma specialist. Most local oncologists, or hematologist-oncologists, are not really specialists in myeloma -- they see patients with lots of different cancers, and generally not many myeloma patients.
For your husband to see a myeloma specialist, he most likely will have to go to a cancer center near you. There is a list of cancer centers with myeloma specialists here at The Beacon. You can find it here:
https://myelomabeacon.org/treatment-centers/
If you let us know where you live, we can give you some recommendations of centers and/or doctors your husband should see.
Seeing a myeloma specialist is very important, and it would be best to do so before your husband's initial treatment has been decided.
We can provide you additional information if you wish. Please understand, however, that when you post a question in the forum, it will not be answered instantaneously. It takes some time -- myeloma is not a common disease. You may not receive a response for a day or two, although generally you will hear back from someone here in a shorter amount of time.
Best of luck to you and your husband.
We're sorry to hear about your husband's diagnosis, but you have come to a good place for information and support.
We understand that this is a frightening time for you and your husband. However, please don't jump to any conclusions about what your husband's diagnosis means until you understand exactly what his diagnosis is. And you won't know that until you talk more with a doctor about what your husband's lab tests say and why the diagnosis was made.
Our suggestion would be that you and your husband go next week to the appointment with the oncologist and learn why the initial diagnosis of myeloma was made -- or even if the doctors are certain that myeloma is really the right diagnosis.
Most likely, the oncologist will want to do more testing, such as x-rays, possibly some more blood tests, and a bone marrow biopsy. Those will help the oncologist determine exactly what is the correct diagnosis and also may provide information useful to determine what treatment is appropriate.
The additional thing we would suggest you do at this time is to start making arrangements to have your husband seen by a myeloma specialist. Most local oncologists, or hematologist-oncologists, are not really specialists in myeloma -- they see patients with lots of different cancers, and generally not many myeloma patients.
For your husband to see a myeloma specialist, he most likely will have to go to a cancer center near you. There is a list of cancer centers with myeloma specialists here at The Beacon. You can find it here:
https://myelomabeacon.org/treatment-centers/
If you let us know where you live, we can give you some recommendations of centers and/or doctors your husband should see.
Seeing a myeloma specialist is very important, and it would be best to do so before your husband's initial treatment has been decided.
We can provide you additional information if you wish. Please understand, however, that when you post a question in the forum, it will not be answered instantaneously. It takes some time -- myeloma is not a common disease. You may not receive a response for a day or two, although generally you will hear back from someone here in a shorter amount of time.
Best of luck to you and your husband.
Re: Husband diagnosed this week - very scared
Thank you so much for your response, being so new here it is extremely frightening. I have already decided after our initial appointment next week that we will travel to M D Anderson in Houston Texas.
Re: Husband diagnosed this week - very scared
Hi Mildred,
MD Anderson has a number of very well-respected myeloma specialists, so you will be in good hands. In fact, one of their myeloma specialists – Dr. Jatin Shah – regularly posts in this forum in his capacity as a Beacon Medical Advisor.
As we said, we understand how this can be a frightening time for you and for your husband. But please always keep in mind that myeloma, although it is generally not a curable cancer, can be treated with some very effective drugs. There are people who post here in the forum who have lived with the disease for many, many years.
MD Anderson has a number of very well-respected myeloma specialists, so you will be in good hands. In fact, one of their myeloma specialists – Dr. Jatin Shah – regularly posts in this forum in his capacity as a Beacon Medical Advisor.
As we said, we understand how this can be a frightening time for you and for your husband. But please always keep in mind that myeloma, although it is generally not a curable cancer, can be treated with some very effective drugs. There are people who post here in the forum who have lived with the disease for many, many years.
Re: Husband diagnosed this week - very scared
Hello Mildred,
I wish to confirm what the Beacon Staff have said. multiple myeloma can often be easily treated in the out-patients department and at home. Survival is usually measured in years and has improved dramatically over the past ten years. I had six months of treatment as mentioned. This was nearly three years ago and I have just completed two years with little or no treatment and I feel quite well for a 60 year-old. Just expect many blood tests and regular consultations.
Best wishes to you and your dear husband. Tell him not to fear too much.
I wish to confirm what the Beacon Staff have said. multiple myeloma can often be easily treated in the out-patients department and at home. Survival is usually measured in years and has improved dramatically over the past ten years. I had six months of treatment as mentioned. This was nearly three years ago and I have just completed two years with little or no treatment and I feel quite well for a 60 year-old. Just expect many blood tests and regular consultations.
Best wishes to you and your dear husband. Tell him not to fear too much.
-
Ian Forsyth
Re: Husband diagnosed this week - very scared
Thank each of you from the bottom of my heart. I woke this morning to all of these encouraging remarks and am feeling better and ready to fight with all I have for this beautiful man who is my life. May God bless each of you today.
Re: Husband diagnosed this week - very scared
Mildred,
I think you and your husband are in the most difficult part of this whole journey: not knowing! It's that moment between "we see something, but can't confirm it yet", and "ok, we now know what it is" which is so very hard.
Believe me when I say the people here on the Beacon forums know how you are feeling. Once a diagnosis is confirmed, then you know what you are dealing with and you can cope much more easily.
One day at a time ...
Blessings to you and your husband.
Toni
I think you and your husband are in the most difficult part of this whole journey: not knowing! It's that moment between "we see something, but can't confirm it yet", and "ok, we now know what it is" which is so very hard.
Believe me when I say the people here on the Beacon forums know how you are feeling. Once a diagnosis is confirmed, then you know what you are dealing with and you can cope much more easily.
One day at a time ...
Blessings to you and your husband.
Toni
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Husband diagnosed this week - very scared
Hello Mildred.
I understand how you are feeling right now, and the initial diagnostic work up is very difficult emotionally. I had trouble getting my head around my diagnosis and it wasn't until I got help and advice from my support group that I was better able to deal with it.
Learn everything you can about myeloma and seek out the support of other patients. Once your husband and his myeloma specialist have a game plan for his treatment, you will feel more like you're in control and making positive gains on fighting this disease.
The initial few months are hard to deal with, but the reality of the diagnosis cannot be ignored. For me, acceptance of my diagnosis was most difficult. Unfortunately, you are not in control of diagnosis, but you are in control of how you deal with it.
I wish you and your husband all the best.
I understand how you are feeling right now, and the initial diagnostic work up is very difficult emotionally. I had trouble getting my head around my diagnosis and it wasn't until I got help and advice from my support group that I was better able to deal with it.
Learn everything you can about myeloma and seek out the support of other patients. Once your husband and his myeloma specialist have a game plan for his treatment, you will feel more like you're in control and making positive gains on fighting this disease.
The initial few months are hard to deal with, but the reality of the diagnosis cannot be ignored. For me, acceptance of my diagnosis was most difficult. Unfortunately, you are not in control of diagnosis, but you are in control of how you deal with it.
I wish you and your husband all the best.
-
Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
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