Tag: New York

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Myeloma Stories

Carole P. – East Norwich, NY

I visited my primary care for a routine blood test, and he discovered that I was anemic. Since I was never anemic before, he referred me to a hematologist/oncologist because I think he suspected something serious was going on. Thank goodness he did because it turned out I had an IGA of almost 5000.

I had a bone marrow test and then began treatment with Revlimid and steroids and then Velcade I also had infusions of Zometa.

I was very lucky that my myeloma was discovered early. It has been four years now and I am doing well.

Last year I had a stem cell collection because my IGA was in the normal range. It has gone up a little since then but my doctor says it is not anything to be concerned about.

My biggest complaint is not the disease. it is the side effects of my medication that bothers me the most. I am and probably always will be on revlimid which causes stomach problems and the Velcade caused me to develop neuropathy in my feet. But considering the alternatives, I consider myself pretty lucky….no lesions in my bones….never needed a blood transfusion …if I ever need a stem cell transplant I have my own which have been frozen.

— Carole P. 

Categories
Myeloma Stories

Carolyn A. – Putnam Station, NY

My husband was diagnosed with multiple myeloma in November of 2012. He had been feeling poorly for awhile – back and shoulder pain and very tired. It took three doctor visits before his primary physician listened to his concerns and did blood work. At that point his primary recommended that he see a hematologist.

Before we could go to our first appt. I took him to the emergency room because he had gotten so much sicker. He was kept overnight because his kidney numbers were a little high. This overnight visit extended to almost two weeks. His kidneys were shutting down so after four days in the hospital, dialysis was started and chemo followed immediately after his first dialysis.

It took almost ten months to get him in remission- he was initially on cytoxan, dexamethasone and velcade. In Feb, 2013, velcade was stopped for a bit because of severe neuropathy. In May he started revlimid to help get him into remission. After three months, his light chains had not decreased but increased from 30 to 215. He then started pomalyst which put him in remission in two months.

My husband is very fortunate to have an identical twin so he was eligible for a syngeneic stem cell transplant. He received his transplant on 12/12/13 at Dana Farber. He was hospitalized for 21 days- his stay was extended because his kidneys shut down again after the transplant. He is currently on day 94 of his new “life”.

It has been tough with all the restrictions but the Doctors keep reminding us that its an investment in the future. He still has many foods he can’t eat, can’t eat out until late fall, can’t go in the woods, garden, mow the lawn or be around anyone who is sick. At this time he is still pretty much in isolation. His light chains are in the normal range. Biggest concern is his hemoglobin is staying around 10 so he gets winded easily but he is slowly but surely getting more strength. WBC, platelets have been excellent- kidney numbers (creatinine) stays between 1.8 and 2.0, actually lower than it has been during his treatments.

Praying everyday for a lengthy remission. At this time, doctors are trying to figure out whether or not to use a maintenance drug. Syngeneic transplants are rare so the maintenance part is fairly new to them. God bless all who have been touched by this horrific disease- it certainly is a life changer. No one else can totally understand unless they have experienced it. Praying for a cure!

— Carolyn A.

Categories
Myeloma Stories

Karen R. – Corning, NY

I was diagnosed on Dec. 22, 2003 when I was 50. It was truly a shock as I had no symptoms and had never heard of Multiple Myeloma. I went to the oncologist in the clinic in our small rural Pennsylvania town. He had never treated a MM patient and gave me a very gloomy prognosis.

My husband and I started visiting specialists further and further from our home and were referred to a MM specialist in NYC who continues to treat me to this day.

Finding a specialist that “fits” you is the most important part of this process. And don’t be afraid to go far from home to find this doctor or a famous clinic for MM.

The MM specialist can recommend a course of treatment and it may be implemented at home with regular visits to the MM specialist for urine and blood analysis.

This course of action saved my life. It has been 10 years and 2 months.

— Karen R. 

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Myeloma Stories

Debra S. – Westbury, NY

I was diagnosed in 1996 at the age of 36. I was very young at the time to be diagnosed with MM. I had just had my second child and a portion of my back kept feeling numb. I thought it was from holding the baby. I went to the doctor and after an xray and blood tests it was determind that my protein was elevated. Further testing determined MM.

I had never heard of MM. I thought they were talking about Melanoma. I was sent to a hematologist who confirmed the MM and was then sent to a specialist. I was really at the beginning stages… more of an MGUS. I went for many opinions and they all confirmed the same thing. As time passed the levels changed ( I am IGG Kappa) and my IGG kept creeping up slowly. It was then determined that I was in a Stage 1.

Now fast forward 18 years and I am still in a stage 1. My IGG fluctuates between 3500 and 4200. I have had no treatment other than Aredia which was stopped a few years ago. I have harvested my cells for a future transplant if needed. I go every 6 months for a follow up and have a skeletal survery once a year. I remain a stage 1 at 54 years old and hope and pray that old age gets me way before MM does. Many of the MM friends I made back when I was diagnosed are gone.

It is comforting to know that the treatments they have now are much more advanced and although there is not a cure yet… and I emphasize yet because I know there will be one soon, people are living much longer and MM has become more of a chronic illness. I just wish some of those friends were still here to see the changes. I know MM effects everyone differently. I have been extremely lucky and I am thankful every day for that. I pray for long remissions and cures for everyone with MM.

— Debra S. 

Categories
Myeloma Stories

Rosalie – Staten Island, NY

My Husband was diagnosed in Dec, 23, 2011 that was our Christmas present finding out he had this rare form of cancer Mulitple Myeloma IGa …He had very bad back pain in previous months and finally his MD decided to take a special test and it was confirmed he had 4 fractures in his spine from mulitple myeloma.

He did radiation plus he had the surgery on his fractures which cause him to lose height 6 inches and it compromised his lung space. In the months to follow he had pneumonia and had to be hospitalized at least 4 times. His doctors put him on chemo and at that point it was one chemo after another they all started out doing him good but eventually stopped working.

Then in 2013 they decided to do a stem cell transplant they harvest his blood but they didnt do it because again he was having issues with his lungs. He then started taking Pomalyst with other drugs and that stopped working then he was put on bendamustine for 6 months and that drug just was not doing anything special with his numbers. Finally they did his transplant this year in February. He stayed in the hospital for 16 days and his recovery went well. He is now at home still feeling weak and having bad pains in his knee which I am hoping its part of the recovery for him.

Its been a very long journey and at times he gets discourage which I can’t blame him. No one realizes how your life is turned upside down and the things we take for granted are no longer available to us. By that I mean going out to dinner with family or friends, vacationing or just being able to spend some timewith our grandchildren , we are always afraid of exposing him to someone who has a cold or cough and with his lung issues and his immune system he can not be around anyone who is sick because that can be deadly to him ..We now pray that his stem cell transplant works and that one day soon we will get back our lives ..I pray for anyone who has cancer and say extra prayers for the people who have Multiple Myeloma.

— Rosalie