• What is a good piece of advice for someone newly diagnosed with myeloma?

    Asked by MyelomaTeacher on Friday, January 16, 2015

    What is a good piece of advice for someone newly diagnosed with myeloma?

    8 Answers from the Community

    8 answers
    • barryboomer's Avatar
      barryboomer

      Spend a Week On LINE before you do ANYTHING and research EVERYTHING you can find having to do with Treatment, Nutrition AND Cancer itself. Don't let the Doctors RUSH you before you are ready. It's been with you for a long time but you just didn't know it....there is time. Chris Wark at Chris Beat Cancer has a Video where He talks to NEW Cancer Patients and it's really great. He's 37 and an 11 year colon cancer survivor.....Read Radical Remission.

      over 4 years ago
    • DJS's Avatar
      DJS

      Someone once asked this group what was the most difficult part of having cancer -- the chemo, radiation, etc.? Everyone answered the same thing: It was the period between the diagnosis and the actual first treatment. I would tell you to take everything as it comes, that nothing that you expect to happen will happen the way you think it will, and …this is going to be a wonderful learning experience. I wouldn't wish it on anyone; I wouldn't trade my experience for anything. You're going to be all right.

      over 4 years ago
    • Gma's Avatar
      Gma

      Have faith, have hope and stay positive!

      over 4 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      Excellent answers but to me my answer is after the treatments! #1 trust your drs and nurses ( at the hospital), they won't prescribe something you don't need -so use the meds they give you. There is a reason for pain pills, sleeping pills, anxiety pills:) don't worry about getting " hooked" :). #2. You may not realize it and will get worried n scared - but your energy will get stronger and you WILL start feeling like you again! You will undoubtedly be a little different, how could you not be? I prefer to say I "tweaked" a few things!! Life seems a lot happier for ME! I've had time to rekindle relationships, do things I didn't have time for , and I can now appreciate so many sweet little things I was too busy to take time to enjoy:)! #3. EXPECT YOU WILL BE MAD AT YOUR BODY N GET DISCOURAGED!! I know this is a strong statement but it's true. Let me explain... Your mind n soul will tell you, "you can do...", but because it will take TIME for your body to recover n rebuild immune system, energy, strength etc, you will truly believe you can handle a task, a trip, something a little more stringent...but your body may shut down n say NO!!! I got very frustrated many times:(( BUT you WILL be able to do these things in time. Be patient:) I know easier said than done..but relax:) you will be able to do these things again!!! You may learn to do it differently ha ha or slower but ..where there is a will, there is a way!! You will also learn your body:) if it needs sleep - sleep! If you need to rest n read a book or watch tv for a few minutes, hours, a day or two, DO IT! Your body will come back to you:) you will learn your limitations. For example I can go full swing for 2-3 days, but then I KNOW the next day I need to relax:) I have learned to build energy for events or things I want to attend so I'm not too tired. Just listen to your body in the weeks, months you are recovering. But NEVER give up on yourself:) you will see the light at the end of the tunnel soon:)) Hope this helps:)

      over 4 years ago
    • Lovstoknit's Avatar
      Lovstoknit

      Think positive and act positive. Do what you need for yourself. I have to rest every weekend so that I can work a full-time plus job all week. I hated the fatigue after the stem-cell transplant and the minute I catch a cold, etc., I'm right back there again. Just keep putting one step in front of the other and ask for what you need, especially from the doctor.

      over 4 years ago
    • MyelomaTeacher's Avatar
      MyelomaTeacher

      Great answers, thanks!

      over 4 years ago
    • vcollier's Avatar
      vcollier

      Realize that myeloma is very complex. Barryboomer talked about smouldering myeolma which you can have for a long time and never know. I have Light Chain Disease which strikes fast and moves fast. I was diagnosed and on chemo the same day and 3 months later I had a stem cell transplant (SCT). The point is that I believe you have to trust your doctors AND learn everything you can. From reading, I knew Revlimid would almost certainly be offered to me after my SCT and I knew it's daunting side-effects. My doctor gave me the "no treatment," 5 mlg treatment, and 10 mlg treatment. We talked. I chose the 5 mlg.

      I also believe you have to always think forward. Imagine yourself stronger while you accept the limitations you have now. Accept that you'll never be exactly the way you were but anticipate that you will be comfortable in the new normal you find.

      Someone mentioned the "waiting" between tests and diagnosis. I guess I totally misread that study because I thought they were talking about the waiting that occurs after you go into remission and have to learn to "live with cancer." It will come back. You just don't know when. That's what I found and still find the hardest. Between testing and diagnosis and the beginning of treatment, I was too sick to worry!! Now, I've got lots of time for worry....unfortunately.

      On this website, I see people post who have lived and are living with myeloma. This gives me courage and encouragement! I'm going to give this my best shot! And I'm constantly being surprised with unexpected blessings. When I was too weak from the after-effects of a bad bout with pneaumonia (Legionaire's Disease actually) to prepare Thanksgiving dinner, I turned the meal over to my 18 and 22 year old grandkids and got the surprise of having a great meal that I would never have given them the chance to cook if I were strong! They even brined a turkey and made bread! I would never have given them that opportunity because, of course, I've been cooking the turkey for years, etc, etc Watch for your own hidden blessings!

      over 4 years ago
    • Douglas' Avatar
      Douglas

      Don't beat yourself up too much over those things that you can longer do, or those things that take a lot longer to do. As your body adjust to changes, you develop a new sense of adjustment. Some things will have to be put on hold, but you also become more aware of how our bodies operate and things that seem brand new. Family relationships are different, but this can be an opportunity for greater closeness and patience. There will truly be difficult days ahead, but try not to let them over shadow your ultimate goal of getting through all of this. Having to use a small hospital bed in my home was not as depressing as the comfort I got by being able to sleep "somewhat" better each night. The joy of eventually sleeping in a regular bed had a value that I would have never appreciated before this happened. Other day to day activities are also a cause for happiness.

      over 4 years ago

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