Tag: Maryland

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Myeloma Stories

Sharon F. – Belair, MD

I awoke one beautiful day I late April 2012 with a rash. It was like prickly heat rash everywhere. I tried to get in to see my primary care giver but she was booked. So no wanting to mess around with it I went to a local emergency care clinic they never really said what they thought the rash was but ran CBC.  When the doc returned to the room she asked me how I felt other then the rash I told her I felt fine, why?

She said you are so anemic you may want to consider being transfused and to get with my doc to run more tests which I did about three days later and took off for the ocean with my daughter and grandson . We were gone three days and on the way home in the car I get a phone call from my doc she said Mrs. Filicko you have multiple myeloma and you are going to need some chemotherapy.  I can recommend someone if you like. Wow! What! My god! Etc etc. So this was the beginning of my journey.  

After seeing one hemo onocoligist I decided to go to CTC. They were great and ran every conceivable test but ultimately I decided on treatment closer to home. I started on velcade subq and dex weekly then the doc said we need to address this spot on your lung so they did a biopsy and sure enough it was another cancer unrelated to the myeloma.

In the meantime I had developed a fib which they thought was made worse by the chemo. So in order to address the lung I had to have a pacemaker before my lung surgery which I had in October of 2012. They removed the upper left lobe of my lung where they were happy to inform me that it was insitu contained and that they had gotten it all unfortunately they could not get the breathing tubes in because of my wind pipe would not accommodate the larger tubes in order to do a less invasive procedure which would have left much less of a scar. Also my trachea swelled around the tube so I was kept unconscious for 2 days so when the took the tube out there was some concern if I would regain my voice or not. I did after about a week of soft foods and liquids.

So now back to myeloma treatment.  My numbers by end of December were great and I was in VG remission so we started talking about a bone marrow transplant which gave me the best hope for long term survival so we started with the shots in the belly in February 2013 harvested my cells in March and did the transplant April 3 2013. When I went in the hospital I was feeling really great lots of energy positive attitude etc. I walked and walked around the ward until I got the dreaded c dif and was confined to my room for about 20 days .

They watch your blood count every day and mine was just not going up so I had more stem cells and then the numbers flew up an I was released April 28 the experience was nothing like I thought it would be I didn’t feel sick or have hardly any side effects so home I went to a sparkling clean house. Thanks to my family and a new appreciation for the little things, after all it’s not everyday your mortality comes around and slaps you down. So the results of the transplant in July 2013 were and continue to stringent complete remission.

It is now a little over a year. I am on revlimid 10 daily. Not to many side effects other than some diarrhea. Also zometa infusion once a month for a year. If I could tell people newly diagnose try not to panic stay off the internet except for reliable sources like this site or the IMF website.  Breath!

— Sharon 

 

 

Categories
Myeloma Stories

Kathy T. – Germantown, MD

I was diagnosed by a blood test in April 2011 at age 63 I was told I was barely Stage 1. I did a non-conventional protocol for a year but it didn’t work. In 2012 I did 6 months of revlimid/dex/velcade with minimal side effects. I went off drugs for about 6 weeks and had my hip replaced (no connection to the myeloma). I was in complete remission in February but then the M-spike blipped up and I went back on Velcade for a few months.

I have been in complete remission since May 2013, just taking 10 mg of revlimid (3weeks on, 1 week off) and a baby aspirin. My only problem is bouts of diarrhea. I also get an infusion of Zometa once a month but I am planning to discuss discontinuing this as I have been on it for almost 2 years and skeletal x-rays show no lesions.

I do lots to keep my bones strong and the less drugs the better for me. I lead a happy, healthy life and I forget sometimes that I have cancer. I share this to give newly diagnosed patients hope – each case of myeloma is so different. Take care of yourself beyond the drugs with good nutrition, alternative treatments, meditation, hydrotherapy, acupuncture and massage. I also have a wonderful therapist who guides me to live mindfully every day. I wish you wellness and send lovingkindness to all who see this.

— Kathy T.

Categories
Myeloma Stories

Claudia T. – Gaithersburg, MD

I was diagnosed in May of 2005. I’ve been a visiting patient at the University of Arkansas since diagnosed.

In the first year I was given two rounds of VDT/PACE, collected my stem cells and then transplanted in September and December 2005.

Following the second transplant I was hospitalized with a respiratory illness and released right before Christmas. I was to have two more rounds(Consolidation) in 2006 but only had one more due to a hospitalization at home for diverticulitis.

I remained in remission for nearly three years when it returned as a plasmacytoma in my right tibia. I received radiation and chemo therapy for two weeks. As the bone was compromised I had surgery at home when the tibia broke. There were two surgeries to place metal in the leg, first one failed after physical therapy the metal broke because the bone had not healed. The second surgery put in more metal and screws but the leg became infected and I lost it above the knee. I was on many combinations of Revlimid, Cytoxan, Dexamethasone, then Pomalyst for one year and a half doing well then had a return in my collar bone and sternum.

I was on a 16 day metronomic treatment with a response but it returned in August of 2013. At that time I was put on Vidazia, and PAC-MED. My stem cells were transplanted as a boost.

In November my PET scan showed a return in the clavicle and sternum at which time a fine needle aspirate was done of one of the lesions in the clavicle.

I am currently on no drugs awaiting approval from my insurance company to start on Mekinist which is a drug used for Melanoma and which my cellular make-up has been tested and shown to be compatible to at least try this approach. In the meantime my Lambda light chain number is increasing and there is tenderness at the clavicular head where the myeloma is located.

— Claudia T. 

 

Categories
Myeloma Stories

Carmen M. – Laurel, MD

I was diagnosed in July 2011 after I had a sudden bone fracture in my humerus(right upper arm) while at my chiropractor’s office , and after many exams and bloodwork. . I was devastated. A year prior to this my blood calcium levels had been elevated but neither doctors nor I thought it to be alarming.

Watch your blood calcium levels because it can be an indicator of Multiple Myeloma. My friend Pike who had MM for 18 yrs before passing introduced me to his doctor at the Mayo Clinic in Minnesota-who is now my second opinion doctor. He also took me to a MM support group he attended in Fairfax, Virginia. I attend the Multiple Myeloma International Foundation regional meeting once a year. I highly recommend them. One learns a lot from other patients there and from doctor/researchers and gets hope.

— Carmen M.