Charlieb's Journey with Multiple Myeloma

Patient: Multiple Myeloma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Male, Age: 62

  1. 1
    • Charlieb
    • Experience with Multiple Myeloma
    about 5 years ago
    Charlieb's Avatar

    Diagnosis of small fiber peripheral neuropathy

    Other Care

    In 2007 I was diagnosed with small fiber peripheral neuropathy by a neurologist who reviewed 10 years of my medical history. That doctor sent me to an Oncologist to check for issues with blood counts and he found that I had the MGUS marker. Neither doctor was sure if this had anything to due with the neuropathy or even if it would develop into Multiple Myeloma. They had been monitoring me since then and gave me the news I now have Multiple Myeloma. Because my neuropathy had become worse a decision was made to start me on chemo now.

    0 Comments
  2. 2
    • Charlieb
    • Experience with Multiple Myeloma
    about 5 years ago
    Charlieb's Avatar

    Diagnosed

    Oh No

    Every three months I went in for testing. They took a bone marrow biopsy in 2007, then just blood test. On every visit I was told my levels were not in normal ranges, but it was not conclusive. Last visit my oncologist was not happy with the results and did another biopsy. It was now cancer.

    0 Comments
  3. 3
    • Charlieb
    • Experience with Multiple Myeloma
    about 5 years ago
    Charlieb's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Dexamethasone once a week for three weeks and Revlimid daily for three weeks. A total of 4 rounds then bone marrow transplant. I will be starting round 2 tomorrow.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  4. 4
    • Charlieb
    • Experience with Multiple Myeloma
    about 5 years ago
    Charlieb's Avatar

    Taste change/loss

    Side Effects

    Even after being off for 1 week, have lost my sense of taste. 4 weeks after last dose and I am just beginning to get my taste back.

    0 Comments
  5. 5
    • Charlieb
    • Experience with Multiple Myeloma
    about 5 years ago
    Charlieb's Avatar

    Mouth sores

    Side Effects

    Same spot every time, under the left side of my of my tongue.

    0 Comments
  6. 6
    • Charlieb
    • Experience with Multiple Myeloma
    about 5 years ago
    Charlieb's Avatar

    21 days on and one week off

    Celebration

    Just finished my second break on Sunday. Finally started feeling good after being on 2 rounds of chemo. Back on at round 3, so much for feeling good.

    0 Comments
  7. 7
    • Charlieb
    • Experience with Multiple Myeloma
    about 5 years ago
    Charlieb's Avatar

    Cancer is shrinking

    Celebration

    After just two rounds of treatment, my protein levels are in the normal range! My doctor is very happy with my response to chemo.

    2 Comments
  8. 8
    • Charlieb
    • Experience with Multiple Myeloma
    over 4 years ago
    Charlieb's Avatar

    stem cell apheresis

    Procedure or Surgery

    The harvest was suppose to take only 1 day, 2 max. They wanted to get 10 million stem cells collected so I would have enough for possibly three transplants. I had received neupogen for 4 days prior to this to build up my white cell count. Day one they got just about 1 million cells. Ended up doing the harvest for 4 days and only got 6 mil.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  9. 9
    • Charlieb
    • Experience with Multiple Myeloma
    over 4 years ago
    Charlieb's Avatar

    Bone Marrow Transplant

    Drug or Chemo Therapy

    Today they will put a picc line in my chest; They are no longer going to put it in the arm. Then they will give me Melphalan to prepare me for the transplant on Thursday.

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  10. 10
    • Charlieb
    • Experience with Multiple Myeloma
    over 4 years ago
    Charlieb's Avatar

    Point of no return

    Decision Point

    After 4 rounds of chemo, I have now gone through stem cell harvest and today I go into the hospital to start the process of stem cell transplant. Once they give me the chemo, there is no turning back!

    0 Comments
  11. 11
    • Charlieb
    • Experience with Multiple Myeloma
    over 4 years ago
    Charlieb's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I was schedule to start melphalan at 8:00pm, Tuesday May 29th. At 7:00 they started a fast IV drip with normal saline. At 7:45 I was handed three cups of ice chips . Instructed to eat the first cup by 8:00; the second cup while receiving chemo and the last after I was done, for 15 minutes. Was surprised nurse used a syringe to push the melphalan. It took 10 minutes to get all of the melphalan in. Now there is no going back.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    0 Comments
  12. 12
    • Charlieb
    • Experience with Multiple Myeloma
    over 4 years ago
    Charlieb's Avatar

    Bone Marrow Transplant

    Procedure or Surgery

    So now June 1st 2012 has become my new birthday. On Thursday May 31st they gave me 3 million stem cells out of the 6 million collected. This was really a non-event as it came in three bags connected to my PICC line. On Friday, June 1st the medical staff said I smelled like sweet corn and wished me a happy birthday.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  13. 13
    • Charlieb
    • Experience with Multiple Myeloma
    over 4 years ago
    Charlieb's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    They had already marked on my calendar, the 6th and 7th would be my worst days. That would be when all my levels drop to 0 (technically speaking). OMG I could not even imaged how bad having the worst flu ever could have been. OK, let me be frank to help anyone about to go through this. Side Effects: Diarrhea; Dry Heaves; Mouth Sore; Chills. They said I did better than a lot of people.

    0 Comments
  14. 14
    • Charlieb
    • Experience with Multiple Myeloma
    over 4 years ago
    Charlieb's Avatar

    Levels came back up

    Celebration

    Transplant has worked and is now grafting in my system. Still waiting for a good day as the only thing to go away was the mouth sore. Came home last Wednesday and every day I have a surprise event. I don't like to sit on my butt, however I just can't do anything. The worst thing I have now is a UTI.

    1 Comment
  15. 15
    • Charlieb
    • Experience with Multiple Myeloma
    about 4 years ago
    Charlieb's Avatar

    Didn't get good results from transplant

    Oh No

    Protein levels did not drop as low as expected. I am going on a maintenance dose of revlimid.

    1 Comment
  16. 16
    • Charlieb
    • Experience with Multiple Myeloma
    about 4 years ago
    Charlieb's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Today, 12-26-12, I started taking 10mg. of Revlimid for maintenance. Hope I can tolerate it.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    0 Comments
  17. 17
    • Charlieb
    • Experience with Multiple Myeloma
    about 3 years ago
    Charlieb's Avatar

    1 year vaccines

    Other Care

    June 11th, 2013 received childhood vaccines. Got very sick afterwards for 2 weeks.

    0 Comments
  18. 18
    • Charlieb
    • Experience with Multiple Myeloma
    about 3 years ago
    Charlieb's Avatar

    Stopped Revlimid

    Other Care

    October 31, 2013 stopped taking Revlimid. I have had chronic diarrhea and very tired since I had my vaccines. Doctor made decision to take me off Revlimid to see if I improve.

    1 Comment
  19. 19
    • Charlieb
    • Experience with Multiple Myeloma
    about 3 years ago
    Charlieb's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Proteins are increasing even while on 10mg Revlimid as maintenance after Transplant. Met with my doctor and decided to up the dose to 15mg before having to try alternate treatment, like clinical trials.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  20. 20
    • Charlieb
    • Experience with Multiple Myeloma
    over 2 years ago
    Charlieb's Avatar

    Celebration

    Two Years out of Transplant!!!!!! For the first time in two years I have been able to ride my bike for 20 miles and still function afterwards. I have also made 5 laps in the pool. I had been stuck at 5 miles last year and 3 laps.

    3 Comments
  21. 21
    • Charlieb
    • Experience with Multiple Myeloma
    over 2 years ago
    Charlieb's Avatar

    bone marrow biopsy

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment