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Judy Knopp

 

PA; juleknopp@aol.com

1939 / Class of '04 / Prior cancer, bone involvement / Chemo, Allo SCT / Remission, relapse / Updated: 2/11

I am not yet a Multiple Myeloma Survivor but I hope to be. I was born January 13, 1939. I live in a rural area of Pennsylvania. I have a total of 5 children one of whom we adopted from Mexico many years ago. I have 12 grandchildren and one great grandchild.

I will try to explain all my problems in the order that they occurred. I had pains in my stomach area for a couple of years, but got no answers whenever I mentioned it to my doctor. Finally, after I became so weak that I couldn't even go up a flight of stairs, he did some testing. He found I was losing a lot of blood in my stool, so he scheduled an endoscopy. Nothing showed there so they scheduled an colonoscopy. That's when they found the tumor. Due to the loss of blood I had to have a blood transfusion. To my amazement the very next day I was able to go up the stairs with no problem at all.

It was the fall of 2000. I was diagnosed with colon cancer. On January 11, 2001, I had surgery. The surgeon removed 18" from my colon. Two weeks later I went back to the hospital with staph infection and had to have my incision reopened. In November of that same year I had skin cancer on my nose. My plastic surgeon said he removed a piece as large as the from the first knuckle to his thumb nail. It had grown into my right cheek area. I thought I was finally clear of cancer and remarked to my family that I wanted a shirt that said "I'm a cancer survivor - twice."

Two years later while preparing for a flight to CA, I was weighing my luggage to make sure it fit within the guidelines of the airline. When I picked up a suitcase, I felt something "pop" in my back and had horrible pain. We did leave the next morning and I carried a pillow to ease the pain in my back. I had a great deal of pain while we were away and had a very hard time getting out of bed or up from a chair. As soon as we returned home, I went to see my family physician. He gave me something for pain and said I had probably strained something. The pain continued for a very long time with no significant relief. Then one day while camping I got a sharp pain the shoot down my right leg like a bolt of lightening. It made me yell out in pain and I had to stop in my tracks. Several days later the same kind pain shot down my left leg. A couple days later I had to call my husband to help me get out of bed because the pain was so intense. I would cling to his shoulders and he would drag me to the bathroom.

Shortly after that the pain was so bad that he took me to the emergency room. The doctor on call called in a neurologist who in turn called a neurosurgeon. They admitted me and for the next two days I had many x-rays, bone scans, EMG which consisted of pins jabbed in my legs, arms, spine and neck, followed by needles actually stuck in all those places. My x-rays showed that I had two spinal fractures and two areas of spinal stenosis plus a herniated disk. The surgeon sent me home with instructions to go be fitted with a body brace. I was in tears feeling that I would have to learn to live with this pain.

My family doctor then sent me to the pain clinic, where the physician gave me an epidural which did absolutely nothing to relieve the pain. I begged the surgeon to do something for my pain, but he said if he tried to fix the stenosis my back would collapse. He finally did Kyoplasty on my spine. This did nothing to relieve the pain in my legs, which continued for the next several months, but he kept refusing to do any more surgery on my spine. I would leave his office in tears each time. I was virtually a prisoner in my own home not being able to walk or drive.

My daughter called one day and told me to check to see if our insurance would cover me if I went to MD where she lives and have more surgery done there to relieve the pain. Thankfully, it did and that's what I did. The very next day, the doctor had me stand beside my bed and I had absolutely no pain at that time. Because I had had an elevated sed rate for many months, we asked my family doctor to do another blood test to see if maybe the problems in my back had been the cause. Unfortunately, my sed rate was even higher than it had been before.

 My family doctor then sent me to a rheumotologist thinking that maybe I had rheumatoid arthritis. This doctor ordered more x-rays and a lot of blood tests. He called my family doctor to discuss the results and they both agreed that I should see an hemotologist/oncologist the cancer center located in one of our local hospitals. The first day there the oncologist said he suspected Multiple Myeloma. I had never even heard of this before. He ordered more x-rays and more blood work plus a 24 hour urine catch. On my second visit he said he was 99% sure that I had MM but he would have to do a bone marrow biopsy to make sure. I had this done one week before Christmas and got the results of my biopsy on December 26, 2003.

Since that time, I've had 4 rounds of Chemo which include Doxil and Vincristine. I've had very serious side effects from them. My oncologist lowered the dosage on my last chemo due to this. In addition to the chemo, I have had Zometa and Aronsep. They did have me on Decadron for a period of time but I had very bad side effects from this also. My doctor took me off of it because he said my side effects were too severe. Since being on the Chemo, I've had burned hands that blistered and peeled leaving me with a lot of pain in all my fingers and also my feet from the balls to the tips of my toes. My fingers are so sore that it's impossible for me to many tasks due to the pain.

My doctor was surprised that I didn't lose my hair from the Vincristine because he said that 95% of his patients lose theirs. Strange thing is that after I had my second back surgery, my hair got so thin that I have bald areas all over the front of my head. My oncologist feels that it is caused either by the anesthesia or stress. My hair is so thin that I must wear a wig to go out in public. He felt possibly anesthesia may have caused it since I had 3 surgeries that year. I had a lot of blood testing done two weeks ago, hoping that I would be ready to go to Johns Hopkins for a transplant, but to my disappointment, my protein levels are still too high and my oncologist wants me to have two more rounds of Chemo. In addition to the MM, I also am a diabetic and have high blood pressure. I would appreciate hearing from anyone who also has MM. Any encouragement will be gratefully appreciated.

October, 2004: Even after two more rounds of chemo (Doxil and Vincristine) my protein levels remained high. I was sent back down to Johns Hopkins to see Dr. Borrello there. He suggested that I take either Velcade or Thalidomide. After one round of Velcade which consisted of getting it twice a week for two weeks and then 10 days off, my protein levels came down to half what they were. My blood count is great which surprised my oncologist as he said almost all his patients have problems with their blood counts while on Velcade. The only side effect I notice from the Valcade is more neuropathy pain which is now spread to my left leg in addition to my hands and feet from the previous chemos. My second round of Velcade was completed last week.

Hopkins sent kits to four of my siblings to see if they could find a match for me for a bone marrow transplant. Two of them matched but they chose my younger brother as my sister has had some pregnancies and they said that can change the antibodies of her blood and my brother would be the better match. We are scheduled to go to Hopkins on October 7 and 8 for pre-testing to prepare for the transplant. I will be having what they term a mini bone marrow transplant which differs from the regular one in that I won't be getting the massive doses of chemo and radiation in preparation for it, but smaller doses. The doctors feel the massive doses are more than my body can take.

Instead of staying in the hospital for all those weeks, I will be able to stay at our daughter's home in MD and they will take me to the hospital every day to receive my medication and have blood drawn. I am so thankful that she lives within the distance they will allow for me to be able to come for treatments. I will have a Hickman catheter put in previous to the transplant for this use. Glad not to have to be "stuck" every day as some of my veins are rebelling and shutting down from all the sticks I've been getting at the Cancer Center here.

I am so thankful too for a brother who is willing to do this for me. He will have to go down to MD several times to give me some of his blood and components of his blood in addition to the initial bone marrow. If it were not for his gift of life to me, I would be without hope at this time.

Having this new chemo work for me and having 2 siblings match me is truly an answer to prayer. So many people not only from my church but friends and family across the world have been praying for me and I thank God for them. I am trusting the Lord that he will continue to keep me in his care and see me through the next steps in what we hope will be remission from this horrible cancer and that I may have several more years to live and spend time with my husband and family.

February, 2006: I apologize for waiting so long to update my story, but I kept hoping I would go into remission so I would have some good news to post. I went to Hopkins for all the tests which included, blood and urine, bone marrow biopsy, pulmonary and x-rays necessary before my actual transplant. We joked saying they wanted to make sure I was healthy enough for them to almost kill me. 4 days prior to the transplant, I had 3 days of heavy chemo followed by full body radiation. I never got sick from all the various chemos, but I got deathly sick from the radiation. Several days after that I lost all my hair in one day. Funny, it never fell out until the radiation.

On October 26, 2004, I received stem cells from my brother. He was on one floor of the hospital while I waited in my bed on another floor. When the nurse brought the bag with the cells she carried with both hands and was showing them to several of the other staff there. When she hung the bag to give me via my IV and into my Hickman catheter she said to me "Happy Birthday". She wrapped the bag with gauze and fastened it to the IV pole. She said they didn't want to take any chances on the bag falling and losing the "gold".

I stayed with our daughter who lives about 45 minutes from the hospital and someone took me back and forth each day for 5 weeks. They they began letting me have a day off occasionally. My 12 year old twins helped by one flushing out my catheter daily and the other one gave me my Lovenox shots in my belly twice a day. While there, I taught them to knit and crochet.

On Thanksgiving day I started not feeling very good. For the next couple of days, I got sicker and sicker. When we took my temperature, we called the hospital. They had me come in and admitted me right away. For the next week, I had teams of doctors coming in to see me. They just didn't know what was wrong. One night they came in about a half hour after giving me a sleeping pill and said I needed a blood transfusion but that they must get my temperature down. They put ice bags under my arms and in my groin area. After about 2 hours the temperature came down sufficiently to have the transfusion. They never did figure out exactly what the problem was but thought it might have been an infection from my catheter.

I was finally able to return to my home right before Christmas, but needed to go back and forth to Baltimore pretty much on a weekly basis for more testing. Because I wasn't getting the Graft vs Host Disease (what this means is that donor cells perceive my cancer cells to be a foreign body and set about to destroy them), the doctors at Hopkins wanted to give me some of my brothers lymphocytes to induce the GVHD. On the way from home to Baltimore, I developed it on my own. My face looked like I had measles and my mouth was so sore, I couldn't eat some things or drink carbonated beverages. They told me it's so good that it happened because had they given me the cells it could have been fatal.

My GVHD flares up every week or so making it impossible to eat many things. The rash makes my face very dry and scaly. Now they decided they want to give me other medications to help the severity of the GVHD. They tell me a little is good but too much is bad. It can affect the liver and kidneys in particular and that can be fatal also. At the one year point, we were hoping for a remission of the MM, but it didn't happen. I go back every 3 months for regular checkups but have had to go down several times in between for other tests. Each time, I get the report that there are still cancer cells in my blood and urine and the bone marrow biopsy taken from my hip.

I still keep hoping that I will go into remission so that I may have a couple more years to live. I know that this cancer is terminal and that there is no cure, but some have gone into remission for various lengths of time. I know no one can give us a definite time line, but on the day of my diagnosis my oncologist said I had one year to live without treatment and possibly three years with it. I am leaving everything in the Lord's hands and keep telling myself that He knows best. People keep telling me that God doesn't give us more than we can bear, but I joke saying I wish He didn't have so much confidence in me.

January, 2009: I realize it's been quite some time since I've updated my story. There was a period of time when I was pretty discouraged about my progress, or perhaps I should say, lack of progress. My GVHD was bothering me quite a bit especially in my mouth, but it was bothersome in my GI tract, eyes and skin also. However, after attending a meeting with a local oncologist from a large hospital in our area, I discovered that my GVHD is actually what is battling my MM. Now when I have flare ups, I think of a little monster poking it's head up and a big baseball bat knocking him down. This image helps me cope with the discomforts of the GVHD.

It is now 4 years plus 3 months past my transplant and I'm sill hanging. Sometimes I laugh and say that I'm still treading water and haven't sunk yet. However, it did take 2 full years before they could confidently say I am in remission. My tests still show a small amount of the MM but at least it's being held at bay. I am having an lot of back pain This area is L2 and L3 which is between the 2 areas where I had Kyphoplasty prior to being diagnosed with my MM. I met with 3 orthopedic surgeons and 1 neurosurgeon and the general consensus is that I need rods and screws but due to my weak bones one told me it would be like putting screws into a Styrofoam cup and expecting them to hold. They said further surgery could possibly put me completely in a wheelchair. At this time, I am able to basically keep up with the most of my housework by working for about 3 to 4 minutes at a time and then lying down for about 15 or more. Once I sit or lie down the pain goes away so for that I am very thankful.

October, 2010: Okay it's now 6 years since my transplant. I am no longer in remission, My M spike is going up and when it reaches a predetermined number set by my MM specialist at Hopkins, I will go back on treatment. The pain in my back is getting worse. When I had my last checkup at Hopkins my oncologist there suggested I go through with the back surgery now as he feels that being on Zometa for bone strength for the past 3 years since I had my broken leg that my bones are strong enough to go forward. I saw both surgeons, an orthopedic and a neurosurgeon. I had my X-rays and MRI's and have a date now of November 9 for the procedure. It will be done in 3 parts. First the orthopedic surgeon lies me on my left side and goes in on my right side, goes around my kidney and places a cage at the bottom of my spine. Then they will place me face down and the neurosurgeon goes in and removes some bones and puts them aside for later. Then the ortho surgeon comes back in and places the plates and screws. He will then take the pieces of removed bones and place them around my vertebra from L1 to L5 to fuse the whole area. I will have to wear a body brace for 3 months. I will also have to use a bone growth stimulator to help the bones to heal and grow. I have already been fitted with the brace and I'm supposed to take it along to the hospital the day of my surgery. Hopefully, once I recover from all this, I won't have such pain in my back. The pain doctor at Hopkins tried cortisone injections, nerve blocks and even injected botox to see if that would relieve the pain. This to no avail.

February 2012: On November 9, 2010 I had a 10 hour surgery done in 3 parts to fuse my L1 through L5 due to such severe back pain. I previously (2003 before MM diagnosis) had Kyphoplasty on L1 and L4. Then 3 months later I had Laminctomies done on L2 and L3.

I was placed on my left side and an incision (20 staples) was made on my right hip and my orthopedic surgeon went in around my kidney and placed a cage. Then an incision (15 inches long) was made in my spine and my neurosurgeon came in and removed the disks and pieces of bone. Once they got in, they found that I would have to have another cage added. Thirdly, my orthopedic surgeon took those bone fragments, crushed them and added a synthetic material and placed these into the 2 cages that were inserted between 2 vertebrae. Rods and screws were then placed to hold the vertebrae in place.

From lying so many hours on my face, it swelled up very bad. Even my hands were very swollen. The doctors said it was because of being on my stomach and face for so many hours. The swelling took a couple days to recede. I was in the hospital for 6 days and they wanted me to go to the nursing home for care after being discharged. I refused so my surgeon gave us a prescription for a hospital bed and I was required to have someone with me 24 hrs a day. Medicare paid for aides to come in for three 8-hour days and my family and husband filled in the other 4 days.
I was in the hospital bed for 8 weeks total.

Originally, I was told that I had to only wear my back brace when standing up. However, x-rays showed a new fracture since my surgery and I was told that I had to wear my brace 24/7, After about 4 weeks, I was allowed to get in the shower and seated. Then my brace could be removed, but had to be put back on before standing up. Prior to the surgery I was told that I would have to wear the back brace for 3 months, but since I had a new fracture after the surgery, I then was told that I must wear it for at least 6 months. Finally after 4 months I was allowed to remove the brace for sleeping. What a relief that is!

Right after coming home from the hospital I was hooked up to a Bone Growth Stimulator that has electrodes that stick to my spinal area and wires go to a small pack that I wear on the front of my brace. These electrodes are changed every 3 days. After about 3 weeks x-rays showed that the bone was starting to grow so that little machine is doing it's job. I change the battery every night before going to bed. I have a charger that keeps them charged at all times.

The week before last when I had a visit with my orthopedic surgeon he was concerned about the amount of pain that I still have. He then gave me a steroid injection on the left lower side of my incision (OUCH). On March 31 he is going to do the right side. He says that the pain is caused by my lower spine having all the pressure of everything above it.

Because I am diabetic he didn't want to do both sides because the steroids make my sugar levels go through the roof. Since I'm on a sliding scale it was easier for me to keep a close eye on my sugars.

I still cannot stand for more than a minute or so before the pain makes me sit. When I either sit or lie down, the pain leaves right away. My fear is that even after going through all this surgery I still am left with a very lot of pain.

Judy in PA

 

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