[Shari]

Feeling alone and out of control

by Shari on Tue Apr 07, 2015 11:02 pm

Hi Everyone,

I am a 47 year old female diagnosed with multiple myeloma in early March of 2015. I had recently started a new job which required a lot of walking when I started having pelvic pain. On February 24, 2015, I was preparing to get dressed for work and meet my daughter for lunch before heading to work when I experienced an excruciating pain in my lower back. I was completely immobilized. I called my daughter and my mom and they in turn dialed 911 who transported me to the E.R.

I was diagnosed as experiencing a severe back spasm and told to follow up with my family doctor. I already had an appointment 4 days later, so I kept the appointment. My doctor seemed really concerned with some of the blood test results (specifically anemia), so she referred my to a hematologist. Upon entering the clinic, I knew this visit was more serious than just a problem with my anemia. The oncologist / hematologist supported her concern but issued more astonishing concern for results that are automatically flagged when numbers are off. He initially told me I may have CML, but would need to complete a series of blood test to confirm his thoughts. Needless to say, within 3 days I received a phone call with the good news that I did NOT have CML, but was followed with the bad news of having multiple myeloma. The doctor asked me to come directly to his office to discuss treatment options, but I declined because I was working a shift and hadn't passed my probationary period.

The following week my mom and I re-visited the oncologist who told us the test results were substantiated and a bone marrow biopsy would estimate the stage of the disease. The biopsy identified the disease at Stage 3. I was devastated and ready to just drop dead. After re­search­ing the disease and finding mostly seniors develop this disease, I felt cheated from a life of enrichment. I wanted to bring the ultimate consequence faster than medically possible with treatment.

I experience fatigue, nausea, diarrhea, constipation, light-headedness, dizziness, and loss of appetite on a regular basis. I don't sleep well, I shower and must recuperate before getting dressed. Every Tuesday, I take 10 (4 mg) Decadron tablets, 1 acyclovir caplet (400 mg) twice daily, Velcade injections, 2 (8 mg) Zofran tablets,12 (50 mg) Cytoxan, and other medication for anxiety and high blood pressure.

This is the beginning of my story.

[Cheryl G]

Re: Feeling alone and out of control

by Cheryl G on Tue Apr 07, 2015 11:26 pm

Oh, Shari, I'm so sorry you've joined this club. But please do not feel alone, and definitely do not feel that things are out of control. You've already taken a big step in the direction of not being alone, and being in more control, by reaching out to others here. You will find many others with similar experiences, and, as you learn more about multiple myeloma, you will gain more control over your life and this disease. No, you will never have quite the degree of control you had before this February, but things will not be as bleak as they now seem.

I know there is so much to learn when you are first diagnosed with myeloma. There is an entirely new vocabulary, and concepts you've probably never heard of or thought about before. It can be overwhelming. But just take it one day at a time and, in a short while, you'll be amazed at all that you've learned and the new perspectives you've gained.

You are now taking your first steps. Hopefully, they will be just a small part of a long journey that almost certainly will be very different than you now fear it will be.

[cdnirene]

Re: Feeling alone and out of control

by cdnirene on Wed Apr 08, 2015 12:21 am

Hi Shari,

I was diagnosed with multiple myeloma last September. I felt overwhelmed too. It helped me initially to focus my energy on practical things I could control. For example, are you able to sit down when you shower? If not, I strongly suggest a bath chair.

Be sure to have a cane handy or even a walker. Be sure you are able to reach the phone from the floor for help if you fall and are too dizzy to get up. I barely was able to reach the phone to call for an ambulance when I fell and was too dizzy to even sit up.

Have you talked to your doctor about the nausea? On my 3rd Velcade treatment I developed horrible nausea later that same day. I couldn't even sip a tiny bit of water without wretching. The doctor prescribed an anti-nausea pill which I take about an hour before each Velcade shot. I haven't experienced nausea again.

[Nancy Shamanna]

Re: Feeling alone and out of control

by Nancy Shamanna on Wed Apr 08, 2015 8:20 am

Hi Shari,

Sorry to hear about the really abrupt start to a myeloma journey! It seems to catch many people off guard, and by surprise. I had a similar start to my journey, with compression fractures of the vertebrae, and could barely walk. But after all the treatments I have had, I am well again, and able to live a nearly normal life.

Your treatments with Velcade and dex are what I had too, as induction chemotherapy. (I have not taken Cytoxan [cyclophosphamide], and is Zofran the same as Zometa?) My bisphosphonate treatment to build my bones was by Aredia.

I remember taking an anti-nausea medication called 'Kytril', which was given intravenously before the Velcade injections, along with a hydrating solution. Six years ago my only choice of taking Velcade was by IV, but now there is another method, called subcutaneous, which is meant to reduce neuropathy.

I hope that the treatments work really well and that your blood counts improve too, both for the anemia and also in terms of the myeloma markers – the monoclonal (M) proteins and the serum free light chain proteins. If there is a characteristic that describes us as patients, it is that we are always looking at our test results, and charting them out as to how we are doing.

Please feel free to post any questions to the forum, for there are many knowledgeable patients, caregivers and physicians who try to answer questions here.

[myeloma mike]

Re: Feeling alone and out of control

by myeloma mike on Fri Apr 17, 2015 1:24 pm

Dear Friend,

Please don't feel alone. l'm a 53-year young male who was diagnosed in April last year. I've had a kyphoplasty in fractures in l2 and 3. l was put on RVD (Revlimid, Velcade, dexamethasone) therapy, which brought myeloma down from 20% to 10%. I had a stem cell transplant in November, and as of February, bone marrow biopsy is showing 0.05%; for now feeling very blessed.

I went back to work in late January working for big brown.The best thing I have done is stay moving and stretching and lots of prayer. This site has been a blessing to me although I've been a stalker way too long and am ready to share.

Stay positive and ask every questions you have. Praying for all who are on this journey.

Mike