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Theodore Theodorou-Moustaka

 

Greece; vasiliki19@hotmail.com

1935 / Class of '02 / Type: IgG Kappa / Bone involvement, ONJ / Updated: 7/06

(By his daughter, Vasiliki)

Everything began in spring 2002, when my father was 67. He had a pain on his shoulder, and the doctor said it was nothing serious, but then in summer the pain became more severe on his upper and mostly lower back. We went to three doctors but none of them said it was anything serious. They gave him some injections and medicine for back pain, but the pain continued everytime worse. We thought it might be bone cancer, because the previous year he had one kidney removed because of a malignant tumor and we thought it was a metastasis. [The tumor was discovered after two operations on his gall bladder. The second time he had icterus (jaundice).] So, we decided to have a bone test which showed nothing! When he had the operation on his kidney, a doctor's assistant told me that something was wrong with my father but nothing else. He didn't say anything about having some test, nothing. After careful thought with all we have been through, I think that the icterus and the kidney problems are linked to the disease. The doctors said no, but there are too many coincidences!

Anyway, in November, 2002, a doctor told us to have a blood test -- the most simple thing to do, but till then nobody had thought of it. We discovered a triple something (sorry, I don't know the name in English, it shows that there is an inflammation somewhere in the body) of the blood and he was hospitalised in Athens. He was in such severe pain that when the stretcher-bearer came and tried to hold him in his arm in order to put him on the stretcher, my father was heard in the whole hospital, so much in pain he was! He was diagnosed with IgG-kappa (the most common form of MM). He stayed in hospital for 15 days, being treated with some VAD combination, I don't know exactly what it was. At that time, I was trying to figure out what this disease was, because I had never heard of that before.

After his treatment we went back home (we live on big island not too far from Athens), but after a week he had meningitis because of the disease, and he was again hospitalised for a month. At first the doctors didn't know whether he would make it through! After being treated for meningitis he also had again a VAD combination! Since then my father had been suffering a lot from bone pain so much that many times he was crying and wishing to die! He once had, in 2003, shingles on his shoulder (mostly) and his back and chest, which made the situation worse. In one year he almost lost 15cm [about 6 inches] from his height, he was 1m78 and now he measures 1m63! Last year he was operated on 3 vertebra on his back (like a kyphoplasty, the doctor put something like cement between the vertebra) and he was greatly relieved from his pain and also he became more straight-backed!

As far as his treatment he has every month Zometa, and for 1 1/2 years he has had Dex after his Zometa treatment 4x a month. He was in remission, but he had to stop because he had been taking it for a long time. They put him on Thal as a maintenance treatment, but it was badly tolerated and they stopped it. So, for a few months he only had Zometa, but then MM started going up so they tried Velcade. He had 2 rounds of Velcade (every round was twice a week for 2 weeks, one week off and then again twice a week for 2 weeks). He had one round last September and the second last November). And then, every time he had Zometa he also had Velcade.

Velcade did miracles on my father's disease, MM was almost untraceable! But when he was on Velcade the first days he had some side effects but the most severe was loss of consciousness like memory lapses, he spoke incoherently and once we almost lost him for a whole day, he was traveling by tube without knowing where he was going! Now he is off Velcade and again on Thal, but this one, the doctor said is a new one [probably Revlimid] without the side effects he had with the other one. Also, for 1 and a half years he has been under a treatment for his osteoporosis (the medicine is called Forsteo, and soon will end). Now, we have another problem! Lately he had pus coming out of his jaw bones and some blood also from this mouth area and we suspect it's because of Zometa. The doctor said that a small piece of bone from his jaw should be removed and have a biopsy to see if it's because of Zometa!

Since June, my father is no longer under Zometa, instead he receives Boudronax (I don't know if I spelled it correctly.) I was told that this medicine is like Zometa but it doesn't have such severe side effects as far the jaw bones and my father told me that he has less blood coming of his mouth! So his current treatment is: Boudronax (once a month), Thalix 100mg per day and Velcade (once a month with his Boudronax treatment).

Apart from that, I can say that this year he is doing better that the previous because now he drives, he goes to the fields, grows vegetables in his garden, he does things that keep him busy, thank God! Of course he keeps complaining of small pains, and me I keep praying that they remain like that! I have to confess that my father's character isn't an easy one, and many times he was losing his faith and wanted to die! We had lived through very hard times and the future sometimes makes me be terrified because I don't know what fate has in store for us! I hope I gave you an idea of my father's condition and his treatments!

Thanks again for your concern and I pray to God that a treatment for MM patients is found and this awful disease becomes an ordinary curable disease without so much pain and suffering.

God bless you all!

Vasiliki from Greece!

 

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