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Denise Villani

 

Bel Air, MD

1954 / Class of '02 / VAD, Thal/Dex, PBSCT, vaccine trial, remission, relapse, Revlimid / Died 5-19-09

I was born in 1954 in a country town outside of Buffalo, NY. I joined the Navy in 1974. I completed 9 years of active duty and 15 years in the Naval Reserve. I presently work as a government contractor for the Department of the Army. I live in Bel Air, Maryland. I am a single mom of two wonderful sons, 18 and 20. Life has had its ups and downs and struggles as a single Mom, which, with the help of God, set the stage for most shocking time of my life.

I was a very healthy active person. No medications, no health problems. I was having some weird types of pains in my head. After looking on the internet, I concluded it was idiopathic headaches. Would come and go months apart. No significant pain to be treated. Finally I got annoyed enough and decided to visit a Neurologist. He did an MRI, EEG, and blood work. All was normal except for an elevated sedrate level. He was not concerned, because I had recently had a complete annual physical and was just fine. I did have some anemia. He sent me to follow up with an interest. But, he decided to do a test for MM. I have no idea why he did the test, but I can only thank God he did. I was diagnosed with MM May of 2002. The marrow was already 60-70% tumor cells. No bone lesions anywhere or renal abnormalities. I was started immediately on a chemo regimen of VAD and Dexamethasone. I had to go in the hospital for five days a month for three months. So much info was thrown at me. Somewhere in there was talk of a transplant, etc.

I tolerated the VAD well and suffered only with the symptoms of the Dexamethasone: Bloating, rapid heart rate and respiration, and fatigue. After the first month I was introduced to some doctors at Johns Hopkins who were starting a vaccine clinical trial for Multiple Myeloma. After outweighing the risks (none, really) I agreed. I had to have bone marrow aspirated and there had to be a significant amount of tumor cells present in order for them to develop the vaccine from these cells. The idea was to eventually give me the vaccine which in turn would cause an immune response to the cancer. The transplant was still part of the protocol, since the tumor count had to be reduced significantly. I continued the VAD but after the third month it was discovered that I was not responding at all and within a month I was switched to oral Thalidomide and Dexamethasone. I did have significant weakness in my legs, and we are not sure if it was the combination or not. The doctors pointed more at the steroids as the culprit.

I responded quite well to the thalidomide. All the plans were being made for me to have a stem cell transplant. I was given one vaccine and then shortly after had leucophoresis to separate and freeze the stem cells for the upcoming transplant. I also had to have a high dose of chemo to not only kill the cancer cells but rapidly produce healthy stem cells for transplant. Well, then came more panicky news, the cancer cells were growing back rapidly again. The doctors felt confident that the transplant procedures would reduce the tumor cells enough for the procedure to be successful. It was, and the transplant procedure, other than 4 days of chemo and 4 days of radiation in preparation, was not as bad as I anticipated. I discovered that much of the information out there is very outdated. The whole experience is traumatic enough, that to read out dated hopeless material. The first literature I was given did not even address transplants

Anyway, the staff at Johns Hopkins were wonderful and I was kept comfortable in the hospital for three weeks. While in the hospital I developed a rejection disease called Graft Versus Host Disease. It is only suppose to happen to donor transplants. This disease can prove fatal, but for me it was heaven sent. It was very mild with a dry mouth and treatable body rash. The doctors said the GVH would cause a natural immune response to any remaining cancer cells and COULD mean a CURE!

Approximately six weeks after the transplant I was to begin my vaccine protocol. This involved 8 series of vaccines 3 weeks apart. (Each series required 5 to 6 vaccines at a time) No big deal. They were excited about all the results of the blood work coming up. I have recently had my 12 month follow-up after transplant. There is no sign in ANY of the tests that I have Multiple Myeloma. They have learned much from the vaccine trial and, I believe they are in the middle of phase two of their trial. I am not sure how many trials will have to be done for it to be standard treatment. Also, since the beginning, I have been getting IV treatments of Aredia, a bone strengthening medicine. They want to continue to keep me on this because they have also discovered that IT ALSO has also produced some immune response against the disease in many patients.

I can only hope and trust in God for the future. I am grateful that I was able to be part of this trial and help others suffering with this awful disease. Look into any clinical trials being offered. They have to be very selective as to your stage of disease and treatments you have already received. There are many, many new drugs available and many in the clinical trial stage. Praise the Lord!

July, 2004: As of my last blood work results, I am still in complete remission, meaning no evidence of disease whatsoever. They are on the brink of some major medical breakthroughs here. It may not be ready for general public use for another 4-5 years. The GVAX vaccine trial is proving quite successful in many of the patients. But, as you know, there are many different scenarios with this disease and you have to fit into one of these scenarios in order for this to work. But there are many, many new medical successes with this disease and many clinical trials suited for your situation. Keep the faith! I recommend looking into any clinical trial you may fit into and also recommend being cared for at a state-of-the-art Cancer Research facility. There are many oncologists who are not up to date on the latest and greatest treatments. Thanks to the International Myeloma Foundation, they are making a difference. in research, information and public awareness. Also, I want to recognize Geraldine Ferraro (former Vice-President candidate). Even though I don't necessarily agree with her political views, she, a MM patient herself, has made an enormous difference with her knowledge and influence in the funding for research into this dreadful disease. My hat goes off to her!

September, 2004: I had my bi-monthly appointment with my oncologist, and still no evidence of the disease in my body! All I can do is give glory to God. My doctor, Dr. Borrello, from Johns Hopkins, the developer of the vaccine I received during the clinical trial, will be speaking at the international "Blood" conference this fall in San Diego, and will be sharing with his colleagues about the wonderful reports of this phase of the clinical trial. Keep praying and never give up hope.

December, 2004: Still no evidence of disease anywhere in my body. I will have my 2 year post-transplant physical at Johns Hopkins Hospital in January. I hope to discuss with them the possibility of getting off the monthly Aredia treatments. I still thank God for my "cure"!

January, 2005: I visited Johns Hopkins Hospital for my 2 year post-transplant physical. Still no evidence of MM in my body. That makes two years with no cancer whatsoever!!

February, 2006: After 2 years in remission the MM showed it's face again. It was quite a shock after so many successful reports. The Lord had sustained me through some difficult times and I knew he would again.

Through the experiences of other patients who relapsed after the vaccine trial, the doctors at Johns Hopkins University discovered that the vaccine did have some immune qualities that remained, making us very responsive to other therapies. I was put on 50 mg Thalidomide daily and tolerated it well with no side effects. During the summer I had a severe allergy problem (unrelated), followed by Chickenpox. Because of the stem cell transplant 2 years ago, I was no longer immune to Chickenpox. After all of this I was not responding at all to the Thalidomide. My oncologist didn't know if it was due at all to the trial my body went through this summer. Regardless, we have added Dexamethasone to the Thalidomide. They are looking at perfecting the vaccine, but also have other promising drugs on trial.

I am not excited about being on steroids, but am grateful that there is medicine that will maintain me. Other than mild bloating, I feel fine and have no other outward evidences of the disease. I am hoping for some more promising breakthroughs in this disease. They are doing such wonderful things in the research of blood cancers. I don't like the fact that I have to think about this everyday and wonder about the future, but if I look just at today, it is not bleak. I am healthy and happy and full of joy with the Lord on my side.

May, 2007: For over a year now I have been on 50mg Thalidomide and deximethisone. My counts have continually gone down and the amount of deximethisone was decreased once I was in the remission stage. The first year on these drugs was very frustrating with the usual effects of steroids. They were very predictable though. I am so grateful, to be able to live a normal life so to speak. I just adapt when I feel tired or my legs feel weak. I am at the point now where I take dex twice a month, but thalidomide still every day. I have a very mild neuropathy which is mild numbness/fuzziness in my feet and in several fingertips. I often feel jittery, bloated, or hot while on steroids. I was taking Zometa, but developed necrosis of the jaw, (dying of the jaw bone) which is a rare side effect of Zometa or Aridia. (Research this on the web) It seems as though this happened because I had exposed bone at the site of an extraction. I went to a specialist and it was determined that it was not very serious for me and that I could continue on the Zometa. As a survivor of MM, I am excited that I am living, breathing and maintaining an active life. We just don't know why we go through these trials, but I have put my life in God's hands and he always takes care of me!

July, 2007: After significantly reducing Dexamethasone with my daily Thalidomide (since I was in remission), I had another month of rest until the counts started rising again. Since the neuropathy was increasing in my feet and fingers, my doctor decided to start me on Revlimid alone. After two months it is working. I feel so much better being of the steroids. I will wait in faith as to what comes next.

June, 2008: Wow, I can't believe It has been almost a year since I last updated my story. It was about a year ago that the Revlimid stopped working and I had to add the Dexamethasone. I only had to take the Dex on Saturday. My physical feeling was very predictable every week. I would feel awesome on Saturday, like I was on speed. I could accomplish anything. I felt the same on Sundays and on Monday I would feel jittery. Then it went down hill from there. I would feel weaker as the week went on, and then the cycle started again. Eventually, this mix of drugs was not working, so they added another, Biaxin. It is an antibiotic. This did the trick and my numbers are slowly going down. Over the last three months, I developed BAD cramps in my legs, feet and hands. I mean BAD! It probably has something to do with the Revlimid. These cramps wake me up at night. I have been taking a muscle relaxer at night, and I think it helps.

The residual effects I have from being on Thalidomide early on is neuropathy in my hands and feet. I do not feel pain, just a constant tingly sensation and slight numbness. I do get weary dealing with this disease, but I thank God I am alive, working and feeling the joy he gives me. I have many wonderful friends and have seen my two sons graduate from college. I just trust God for what he brings my way and hold on to his grace and power to work through all of this. I still have to say it is amazing after 6 years, I can actually be on a pill for cancer!!

Denise Lovett Villani, age 54, of Bel Air, MD, died on May 19, 2009 at Upper Chesapeake Medical Center in Bel Air, MD. Born in Springville, NY, she was the daughter of the late Mack and Barbara Lovett. She was a veteran of the U.S. Navy and had worked at Aberdeen Proving Ground as an administrative assistant. She was a devout Christian and a lover of all things art and design.

Ms. Villani is survived by her sons, Gabriel Anthony Villani of Bel Air, MD and Michael Emerson Villani of Danvers, MA; and siblings, Lorraine Stinson of Rochester, NY, John Paul Lovett of Walworth, NY, Terese Lovett McMahon of Lackawanna, NY and Annette Brackin of Little Elm, TX.

 

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