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DiscussionMultiple Myeloma: Come introduce yourself and let's talk
Blood Cancers & Disorders | Last Active: Feb 13 1:18pm | Replies (220)Comment receiving replies
Replies to "Right now, I'm doing 3 month blood panels. I have to go and have a ct..."
Welcome to Connect, @mm_mm.
I'm confident @jan52241 will appreciate your experience from 25 years ago, which seems to match so closely to what she is going through right now. 25 years! Wow.
Certainly hand washing is the single most effective way we can protect ourselves from infection. mm_mm do you also get a flu shot?
Colleen, MM is cancer of the immune system. With an impaired immune system, inoculations, immunizations, flu shots do not always work. In my case my hematologist at Mayo stopped inoculations, immunizations and flu shots for me. MM patients are not allowed to get live vaccinations. The doctor will make the final decision which can differ from patient to patient.
IH
Thank you for explaining.
Your blog has helped me tremendously, I went for labs and a bone marrow biopsy yesterday and made my husband watch the biopsy! He came out with a different attitude after that. Tomorrow we meet with my oncologist, Dr. Tricot to go over all results, including the CT I had on my left and right humerus. I want him to give my husband (and me) a clear diagnosis of where I am at in this journey. My Dr. said it would be okay to get flu and pneumonia vaccinations, but I am waiting to see him before I do. This past months have not been going well. I had a respiratory infection, I keep getting cold sores on my lips and my spine and pelvis have been causing my a great deal of pain. Hopefully we can get things cleared up tomorrow. And, as much as I don't want to, I am going to ask for pain medication to have on hand for those really bad days. I have also starting logging in a journal how my days are going. I don't know about you, but every day is a surprise. Thanks for your input. It makes me feel a lot better. 🙂
Good for you Jan. It sounds like you are taking the proverbial bull by the horns. Might I also suggest that at your appointment tomorrow that you ask questions until the doctor's explanation is clear to you (and your husband). I like using the "talk it back" method where I repeat the doctor's words back to him or her, in my own words. First this helps recognize any possible mis-interpretation of the doctor's words, secondly it possibly gives the doctor some plain language versions of his/her explanations to use with other patients (doctors learn too, right?), and thirdly, by repeating it back it helps you retain the information better - at least it has that effect for me.
Please let us know how your appointment goes tomorrow and what you learn.
Glad to hear your husband in on your side! As to flu shots and vaccinations, I am sure your doctor made the right decision for you. Over the many years I learnt trusting the decision of your doctor is of utmost importance. I am also keeping a journal and write down my questions so that I do not forget to ask them. Even after 25 yrs every day is a surprise. By the way I live 5 walking distance from Mayo.
Would love to meet you and your husband. If you feel like it, let me know.
Take care, IH
It is a huge comfort and spirit boost to hear all of your stories. Emotionally, it has given me the guts to ask what I need to and put people in their place when they make me feel like a hypochondriac. Doctors appt. today. Let you all know what happens. Thank you for your support my new friends!
Hi there jan52241: just wondering how you are doing and if you got any answers of late. Have been there with my husband and
know how waiting for answers can play on one? Take care and know you are being thought of. Take care, ozys
If I understand you right your MM is still in the smoldering stage. I was diagnosed 25 yrs ago and in the beginning I had smoldering MM.
My X-husband was in total denial and refused to believe that I had cancer. I certainly can feel with you and hope he will accept your disease.
Perhaps your hematologist can explain MM to him at your next examination.
During the smoldering stage I also came down with many life threatening infections, even meningitis. Once I started treatment infections became less and less. I was told that my immune system is not as strong as before coming down with MM but still works.
I make sure to constantly wash my hands and try to stay away from people with infections. It helps me.
MM certainly has become treatable. So chin up. Best wishes, IH