2ndChance's Journey with Multiple Myeloma

  1. 1 Oh No Icon Oh No
  2. 2 Radiation Icon Radiation
  3. 3 Decision Point Icon Decision Point
  4. 4 Celebration Icon Celebration
  5. 5 Procedure or Surgery Icon Procedure or Surgery
  6. 6 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  7. 7 Side Effects Icon Side Effects
  8. 8 Side Effects Icon Side Effects
  9. 9 Side Effects Icon Side Effects
  10. 10 Side Effects Icon Side Effects
  11. 11 Side Effects Icon Side Effects
  12. 12 Celebration Icon Celebration
  13. 13 Side Effects Icon Side Effects
  14. 14 Side Effects Icon Side Effects
  15. 15 Celebration Icon Celebration
  16. 16 Procedure or Surgery Icon Procedure or Surgery
  17. 17 Procedure or Surgery Icon Procedure or Surgery
  18. 18 Side Effects Icon Side Effects
  19. 19 Side Effects Icon Side Effects
  20. 20 Celebration Icon Celebration
  21. 21 Other Care Icon Other Care
  22. 22 Procedure or Surgery Icon Procedure or Surgery
  23. 23 Side Effects Icon Side Effects
  24. 24 Side Effects Icon Side Effects
  25. 25 Side Effects Icon Side Effects
  26. 26 Other Care Icon Other Care
  27. 27 Loss Icon Loss
    Job
  28. 28 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  29. 29 Celebration Icon Celebration
  30. 30 Oh No Icon Oh No
  31. 31 Celebration Icon Celebration
  32. 32 Side Effects Icon Side Effects
  33. 33 Side Effects Icon Side Effects
  34. 34 Side Effects Icon Side Effects
  35. 35 Side Effects Icon Side Effects
  36. 36 Side Effects Icon Side Effects
  37. 37 Milestones Icon Milestones
  38. 38 Other Care Icon Other Care
  39. 39 Celebration Icon Celebration

Survivor: Multiple Myeloma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 7 years ago, Female, Age: 52

  1. 1
    over 4 years ago
    2ndChance's Avatar

    Diagnosed

    Oh No

    In April 2009 I was at the beach with my husband and our great dane. While walking on the beach, I was holding the leash, my dog yanked me and I heard something in my left leg pop. I went to the doctors 2 days later because I was in so much pain I could barely walk. I was diagnosed with a torn hamstring, given muscle relaxers for 2 weeks and then physical therapy for 4 weeks three times a day. After 4 weeks of physical therapy I was filling better but still having muscle cramps. Then July 2, 2009 while on a business trip with my boss, I started experience extreme pain and muscle cramps so bad I could not put any weight on my left leg. My boss drove me back home which was 6 hrs away to my husband so I could go to my doctor. I never made it to my doctor the next day because the pain was so severe that all I could do was scream, walking by now was out of the question the whole left side up to my pelvic area was having intense pain. My husband immediately took me to the ER and after numerous tests, xrays and an mri I was diagnosed July 4, 2009 with Multiple Myeloma. I was in the hospital for almost a month. I was so heavily medicated that I don't remember much of it and I was also in a wheel chair since they could not figure out how to control my pain other than with heavy narcotics. The reason for me not being able to walk was the mri showed a large tumor the size of an orange pressing on my sciatic nerve.

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  2. 2
    over 4 years ago
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    External radiation

    Radiation

    Since narcotics could not control my pain, because the MRI showed that I had a tumor the size of an orange pressing on my sciatic nerve which was causing me not to be able to walk. I was scheduled for 5 weeks of radiation to shrink the tumor in hopes it would shrink it enough for me to be able to walk again. The first couple of weeks I experienced fatigue and I slept all the time, but I was still on narcotics as well. About day 12 I started experiencing radiation burns to my lower back where the radiation was targeted which was extremely painful as well. After 5 weeks the tumor was shrunk enough that I was able to walk with a heavy limp. Specialist then chemo next

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    over 4 years ago
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    TANDUM BONE MARROW TRANSPLANT

    Decision Point

    After few weeks of radiation I was sent to see a bone marrow transplant specialists. The doctor recommended a tandem/double transplant he said that it would strengthen my chances of a complete stringent response, which is what we are shooting for. But the decision was ours. The doctor also started me on Morphine, thank god! This allowed me stop the fenetynol patch, and the percocet. For the first time in months the pain is now being controlled enough that I was getting some relief.

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  4. 4
    over 4 years ago
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    Breakthrough

    Celebration

    Radiation has shrunk the tumor on my sciatic nerve by 25% I will be able to walk again!

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  5. 5
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    Once radiation was completed the doctors wanted to start a rigorous chemotherapy plan so my doctor suggested a port which would be implanted in my chest on the left hand side.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  6. 6
    over 4 years ago
    2ndChance's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    In September my chemotherapy began, the doctors told me that it was a very strong regimen that they were given me to better my chances of a total stringent response. I was looking at 6 weeks of chemo, everyday for 7 1/2 hrs for 6 weeks, somewhere on my 5th week I would be sent to a specialist to discuss a bone marrow transplant. At this point there was so much information that is giving to you that I'm so glad my caregiver, my husband was able to understand them because I was too sick to remember much. I was on a chemo regimen called DTPACE,

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    over 4 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    the chemotherapy medication had caused me to be severely anemic. I wound up having a total of 16 blood transfusions during my whole chemotherapy regimens and my 2 bone marrow transplants.

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  8. 8
    over 4 years ago
    2ndChance's Avatar

    Chemo brain

    Side Effects

    "chemo brain", confusion this term so fit me during chemo. I felt very confused, and irritated because I could not understand half of the information that I was hearing it was so overwhelming. The chemo medication just keeps you in this state most of the time. Luckily my husband wrote down everything, had copies of all tests taken and had all books and brochures so when I wanted to I was able to read, and he would try and help me understand what was going on.

    0 Comments
  9. 9
    over 4 years ago
    2ndChance's Avatar

    Depression/Anxiety

    Side Effects

    Constant chemo and having cancer I believe depression and anxiety go hand in hand. I was always crying, sleeping, and being so anxious especially when it was time for a doctors appointment. Having to come to terms with your own mortality is something I was not expecting to think about until I was a lot older. All I could think about were my sons and whether or not I would be alive to see either of them go to college, get married, etc. Also I kept thinking about my job and how much the work was piling up.

    0 Comments
  10. 10
    over 4 years ago
    2ndChance's Avatar

    Flu-like symptoms (fever, chills, sweats)

    Side Effects

    Chemotherapy made me feel like I had the flu numerous times. We were constantly watching my temperature, changing the sheets and my clothes because of the sweats. Then when I wasn't experiencing the sweats I was chilled, thank goodness for the oncology office having warmed blankets for treatments.

    0 Comments
  11. 11
    over 4 years ago
    2ndChance's Avatar

    Diarrhea

    Side Effects

    The chemo and medications I was on caused me too have severe diarrhea at times. I was constantly talking lomotil or this powder drink called colostrum lite sometimes it worked. It seemed like just as I got my system back a change in medication or treatment it would start all over again.

    0 Comments
  12. 12
    over 4 years ago
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    Cancer is shrinking

    Celebration

    CHEMO IS WORKING MY NUMBERS AND TESTS ARE LOOKING GOOD! POSSIBILITY OF REMISSION

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  13. 13
    over 4 years ago
    2ndChance's Avatar

    Hair loss (alopecia)

    Side Effects

    Hair Loss - getting the "Cancer" diagnosis was awful but for some reason loosing my hair was just as devastating! I remember crying all the time about my hair; trying on wigs; scrafs; hats; I have never worn a scarf or a wig before and the only time I wore a hat is when it was cold outside. I never did think I looked good in wigs or hats so I wore a scarf or cap the whole time. Well now I think woman look as beautiful as a man does, even more so!

    0 Comments
  14. 14
    over 4 years ago
    2ndChance's Avatar

    Nausea/Vomiting

    Side Effects

    I'm constantly nausea's and experiencing heart burn. They give me anti-nausea medication each day and then I have the anti nausea promethazine to take when I get home, it works but leaves me tired.

    0 Comments
  15. 15
    over 4 years ago
    2ndChance's Avatar

    Chemotherapy Completed

    Celebration

    Chemotherapy is completed and now its time for my bone marrow transplants to begin. First they will harvest my own cells for my bone marrow transplants.

    0 Comments
  16. 16
    over 4 years ago
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    Surgery

    Procedure or Surgery

    I had another surgery to place the catheter for the harvesting of my cells for the bone marrow transplants. Tomorrow the harvesting will begin. The doctor is going for harvesting 10 million cells, 5 million for each transplant.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  17. 17
    over 4 years ago
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    1st Bone Marrow Transplant December 10, 2009

    Procedure or Surgery

    December 10, 2009 with radiation and chemo behind me I start my first bone marrow transplant today. I'm very anxious. They will put the harvested cells back in me after I complete 2 days of high dose chemotherapy. This chemo is so toxic it can burn your throat and stomach so you have to eat ice or Popsicle for the whole 45 minutes they are administering it.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  18. 18
    over 4 years ago
    2ndChance's Avatar

    Fatigue (tiredness)

    Side Effects

    I'm tired all the time after the first bone marrow transplant. I come in every day for fluids and to have my temp, hemoglobin, lite chains, etc. tests.

    0 Comments
  19. 19
    over 4 years ago
    2ndChance's Avatar

    Lymphedema

    Side Effects

    I'm having severe lymphedema in my feet from all the fluids so I have to spend time...lots of time with my feet elevated. My husband bought a leg wedge and some diabetic socks for me. They helped but I can't stand for long periods of time or sit for long periods, so I spend most of my time in bed with my legs/feet elevated.

    0 Comments
  20. 20
    over 4 years ago
    2ndChance's Avatar

    Remission

    Celebration

    I completed one bone marrow transplant and the doctor said with all the numbers and tests it appears that I'm already in remission but he suggests completed the other transplant for better results

    0 Comments
  21. 21
    over 4 years ago
    2ndChance's Avatar

    Hospitalization

    Other Care

    I wound up with a kidney and bladder infection just before I was released from my first bone marrow transplant. I was urinating blood. I wound up having to have 4 blood transfusions and spent a week and half in the hospital.

    0 Comments
  22. 22
    over 4 years ago
    2ndChance's Avatar

    2nd Bone Marrow Transplant

    Procedure or Surgery

    April 18, 2010 its time for my second bone marrow transplant. It has been 4 months since my first one. My husband and I took a nice vacation and went to the beach [our favorite place] for a week. Oh and by this time my oldest son had been engaged for about 6 months and was due to get married in July 2010. After each bone marrow you have to be quarantined 6 months from everyone due to your immune system being low. I have to wear a mask and have anyone else a mask before they can come around me.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  23. 23
    over 4 years ago
    2ndChance's Avatar

    Fatigue (tiredness)

    Side Effects

    Here we go again, I'm so tired all I want to do is sleep. There are times it is so hard to stay awake.

    0 Comments
  24. 24
    over 4 years ago
    2ndChance's Avatar

    Pain

    Side Effects

    I'm in chronic pain all the time. I have permanent nerve damage in both feet and hands from the chemo and damage in the left leg from the the severe muscle cramps. Even though I'm in remission I still take loads of medications; pain medication to control the chronic pain, anti-anxiety medications, anti-cancer drugs, anti-nausea medications, vitamins, supplements, at least 14 different pills 5 times a day!!! I use to hate to take pills....so ironic!!! I walk with a limp and a cane and at times it is extremely bad I'm back in the wheel chair.

    0 Comments
  25. 25
    over 4 years ago
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    Nausea/Vomiting

    Side Effects

    ughhhh!!! Here we go again with the nausea and vomiting. Thank goodness for anti-nausea meds.

    0 Comments
  26. 26
    over 4 years ago
    2ndChance's Avatar

    Hospitalization

    Other Care

    Again, just before they send me back home after my 2nd bone marrow my hemoglobin dropped to 5 [normal is 12] and I was severely anemic. The doctor had me hospitalized and I wound up having another 4 units of blood to raise my hemoglobin.

    0 Comments
  27. 27
    over 4 years ago
    2ndChance's Avatar

    Job

    Loss

    It has been over a year since I have been to work, my job has been very good to me. My boss called again to ask if I was going to be able to come back to work soon. I'm unable to ever return to work. I have chronic pain, I'm on narcotics to help control the pain and I have severe neuropathy in both feet and hands caused by the chemo.

    0 Comments
  28. 28
    over 4 years ago
    2ndChance's Avatar

    Bone strengthening drugs

    Drug or Chemo Therapy

    I have been having quarterly treatments of Zometa since 2010 and will continue to have for the next 3 years for a total of 5 years. This drug is given to me the same way that chem is administered, through my port. I also receive IvIg treatments (to boost my immune system) as well. After receiving the Zometa my bones hurt for a few days after the treatment and its very painful.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  29. 29
    over 4 years ago
    2ndChance's Avatar

    Remission

    Celebration

    COMPLETE STRINGENT RESPONSE

    0 Comments
  30. 30
    almost 2 years ago
    2ndChance's Avatar

    back on Potassium

    Oh No

    My doctor has started removing medication a few months after complete remission diagnosis, like potassium, magnesium, etc. During a routine checkup, my blood work showed that my potassium was extremely low so after being off of it for about a year I'm back on, what I call the "horse pills".

    0 Comments
  31. 31
    almost 2 years ago
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    Finished treatment

    Celebration

    Finally removed from all chemo medications, Revlamid, July 2013.

    0 Comments
  32. 32
    almost 2 years ago
    2ndChance's Avatar

    Weight gain

    Side Effects

    I have continued to gain weight after treatments with all the different medications and due to having chronic pain from the neuropathy and the tumor in my back (inoperable) my weight has sky rocketing to 350 lbs. I'm unable to exercise for more that 10 mins because my feet start swelling real bad and its so painful. Although I continue to have eating problems (still don't feel like eating much), usually eating maybe twice a day. After clearing it my doctors I'm going to start making my self drink weight watchers shakes even if I don't feel hungry. I'm told that this is most likely caused by all the medications I'm still on.

    0 Comments
  33. 33
    almost 2 years ago
    2ndChance's Avatar

    Pain

    Side Effects

    I was told that I have permanent neuropathy (damage of the nerves) in my feet and hands. I have this pain everyday: on good days my rings fit and there is no swelling in my fingers and feet, but I still get the numbness, feeling like my fingers and toes are on fire, but pain scale will be around 5/6; on a bad day, my feet and hands will be swollen, can wear my rings or normal shoes, the fire feeling the numbness is doubled and on the pain scale 9/10. I have to wear diabetic socks they give me some support on my feet from the pain, there is even times when my feet feel like I have had Novocaine injected into them. Had some type of testing a couple of years ago to determine how bad the neuropathy was for social security purposes and it was determined that my neuropathy goes up to parts of my calves.

    0 Comments
  34. 34
    almost 2 years ago
    2ndChance's Avatar

    Pain

    Side Effects

    Besides having the pain from neuropathy in my hands and feet, I also have the lower back pain where the tumor is located. The tumor is what they call a "bony" tumor caused by the Multiple Myeloma and its inoperable. The tumor is located in my lower back and before it was shrunk with radiation it pressed on my sciatic nerve which is why I was in so much pain and couldn't walk.

    3 Comments
  35. 35
    almost 2 years ago
    2ndChance's Avatar

    Mouth dryness

    Side Effects

    I'm still experience "dry mouth", which I thought was only due to my chemo treatments. I'm its also a side effect of the pain medications I'm on. Oh goody!!!

    0 Comments
  36. 36
    almost 2 years ago
    2ndChance's Avatar

    Depression/Anxiety

    Side Effects

    I still have depression and anxiety most of the days. Sometimes it seems I just can get away from the "C" word, it will be on TV or I'm dealing with the chronic pain of my neuropathy and the tumor in my back. I get petrified the on my checkups to the oncologist, which is every 3 months, blood is drawn and urine checked, that they are going to tell me its back! I have nightmares that its back and it worse than before. I'm sure everyone feels this way but it really makes me sad and scared.

    0 Comments
  37. 37
    almost 2 years ago
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    6 Month checkups

    Milestones

    April 27, 2015 my 3 month check, I received some news that was one of the milestones on our list. My doctor told me that they consider me completely cancer free and even thinking about having me come for my checkups every six months! A great big milestone, next to being cancer free! The news was almost surreal to me I thought it would be one that would take me longer to achieve since I have had some health issues that kept me going back to the doctor month after month. This news comes just shy a month of 6 yrs since being diagnosed in 2009. Yeah me!

    0 Comments
  38. 38
    about 4 years ago
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    Uriologist

    Other Care

    I'm continuing to have blood in my urine so my oncologist sent me to a a specialist. After a few test and about a month of having blood in my urine of and on for a month, I have kidneys stones, 2 of them. So the doctor tells me that I may see a little blood in my urine until I pass the kidney stones

    0 Comments
  39. 39
    about 4 years ago
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    Anniversary

    Celebration

    July 2015, will be 5 years of remission!!!!!!!

    0 Comments