I was just recently diagnosed with multiple myeloma. My primary doctor informed me almost a year ago that my blood test showed a loss of blood and other abnormal readings. I had a colonoscopy and endoscopy performed to make sure that I didn't have any cancerous or benign tumors present. None were found. What was found was gastritis and irritation of my esophagus.
I was put on medication for 3 months with no improvement in my blood counts. I finally went to see my OB/GYN doctor and she advised me to see a hematologist, who did a more detailed analysis of my blood. After the results of my blood work came back, he informed me that he suspected that I had multiple myeloma because of high M protein found in blood (think he said 3,000) and performed a bone marrow procedure and bone x-rays. Bone x-rays showed no damage to bones.
Not sure what stage of multiple myeloma I have. Next week I start taking Revlimid along with an aspirin and a steroid for 14 days each month for 6 months. Has anyone been on this therapy? If so, I'd like to know what you've experienced while taking these meds.
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Re: Newly diagnosed with multiple myeloma
Hello Marilyn:
I am sorry to hear of your myeloma diagnosis. I am glad you found the Beacon forum, as it has information that might be helpful to you.
Firstly, and simply, your first step is to get your case reviewed by a myeloma specialist, that does multiple myeloma full time or near full time. If you are near a large city, it should not be a problem to find one. If you post your location, other posters can guide you. In rural areas, myeloma specialists are in some cases harder to find, but in that case you should see a local doctor, and the myeloma specialist (expert) once or twice a year, and they should work as a team.
Good luck to you.
I am sorry to hear of your myeloma diagnosis. I am glad you found the Beacon forum, as it has information that might be helpful to you.
Firstly, and simply, your first step is to get your case reviewed by a myeloma specialist, that does multiple myeloma full time or near full time. If you are near a large city, it should not be a problem to find one. If you post your location, other posters can guide you. In rural areas, myeloma specialists are in some cases harder to find, but in that case you should see a local doctor, and the myeloma specialist (expert) once or twice a year, and they should work as a team.
Good luck to you.
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JPC - Name: JPC
Re: Newly diagnosed with multiple myeloma
Marilyn-
I'm sorry that you are joining us, but you will learn a lot from those of us who are here. I agree with JPC that you should see a myeloma specialist who is an oncologist who only treats people with myeloma and does myeloma research. The specialists will work to coordinate your care with your local oncologist so that you don't have to travel to see him/her on a frequent basis. The reason for seeing a myeloma specialist is that myeloma is a relatively rare cancer and the teatment options available to us are many and change quickly. Just in November of 2015 three new drugs for myeloma were approved by the FDA.
What is the dose of Revlimid that you will be taking and what is the dose of dex? Will you be taking the dex once a week or more often? I took 15 mg of Revlimid for 21 days on and 7 days off and dexamethasone 40 mg once a week for my initial therapy. My blood levels improved quite quickly and I began to feel better. The side effects that I had at the time were horrible muscle cramps that appeared during the night several times a month. I don't know if they were from one of the drugs or a combination of the drugs. The dex made me speedy for 1-2 days following each dose with sleeplessness at night and then I would crash on the 3rd day. I also would sweat profusely for 1-2 days following each Dex dose.
Now, 7 years later following initial treatment, stem cell transplant, total response for almost 3 years and now relapse of 3 years, I am taking Revlimid 10 mg 21 days on/7 days off and 12 mg of dex. My side effects have changed since I've been on treatment with these 2 drugs at varying doses over the last 3 years. I have chronic GI problems, some fatigue and some problems with dex. But, I am still here and doing well. The treatment regimen is keeping my myeloma under control and I am living an active life.
Good luck with your treatment and let us know how you do. One other thing, make sure that you get copies of all of your test results each time that you have something done. It's important to keep track of everything.
Nancy in Phila
I'm sorry that you are joining us, but you will learn a lot from those of us who are here. I agree with JPC that you should see a myeloma specialist who is an oncologist who only treats people with myeloma and does myeloma research. The specialists will work to coordinate your care with your local oncologist so that you don't have to travel to see him/her on a frequent basis. The reason for seeing a myeloma specialist is that myeloma is a relatively rare cancer and the teatment options available to us are many and change quickly. Just in November of 2015 three new drugs for myeloma were approved by the FDA.
What is the dose of Revlimid that you will be taking and what is the dose of dex? Will you be taking the dex once a week or more often? I took 15 mg of Revlimid for 21 days on and 7 days off and dexamethasone 40 mg once a week for my initial therapy. My blood levels improved quite quickly and I began to feel better. The side effects that I had at the time were horrible muscle cramps that appeared during the night several times a month. I don't know if they were from one of the drugs or a combination of the drugs. The dex made me speedy for 1-2 days following each dose with sleeplessness at night and then I would crash on the 3rd day. I also would sweat profusely for 1-2 days following each Dex dose.
Now, 7 years later following initial treatment, stem cell transplant, total response for almost 3 years and now relapse of 3 years, I am taking Revlimid 10 mg 21 days on/7 days off and 12 mg of dex. My side effects have changed since I've been on treatment with these 2 drugs at varying doses over the last 3 years. I have chronic GI problems, some fatigue and some problems with dex. But, I am still here and doing well. The treatment regimen is keeping my myeloma under control and I am living an active life.
Good luck with your treatment and let us know how you do. One other thing, make sure that you get copies of all of your test results each time that you have something done. It's important to keep track of everything.
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 with multiple myeloma
Nancy, I will be taking Revlimid for 14 days each month for 6 months. I think he said he would start me on the highest dose and then lessen the dose. I will take steroid meds once a week while taking the Revlimid. If I don't do well on the steroids than he said he would lessen the dose to once a month.
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