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My Treatment against Follicular Lymphoma Cancer with Zevalin

donald51's picture

My Treatment against Follicular Lymphoma Cancer with Zevalin

Hi, my name is Don. A 51 year old man that has always been active, stayed in shape, tried to maintain a fairly good diet most of my life and always felt that I was in very good health. It seemed as though I never got sick, at least not bad enough to warrant going to a doctor. So maybe a cold every now and then and had to have back surgery in 1996, a tonsillectomy in the early 60's and a few stitches here and there. In the year of 2006 my wife and I noticed that I had what we thought were just muscle mass or something at the top of each of my legs in the groin area, didn’t think much about them.

Then in 2007 during the holiday season I noticed a lump that would appear in my left armpit whenever I raised my arm. I went to see a general practitioner and was prescribed an antibiotic that I took for a week with no results and was referred to surgeon. After doing his physical inspection of all the areas of my lymph nodes he said that he could feel several in both armpits and wanted to remove the large one in my left armpit to do a biopsy.

So on January 18, 2008 I went to the hospital and 5 hours later I awoke to my wife crying beside me. At that instant I new that what the surgeon had said “it’s probably nothing” was cancer. I now had Low Grade Indolent Small B Cell Non-Hodgkin's Follicular Lymphoma. Shouldn’t I be scared or mad or something? I didn’t seem to be bothered by it all. I know that I am going to overcome this! As soon as I got back to the house I got on the computer to look up FOLLICULAR LYMPHOMA. When I hit the enter key the first words I that caught my attention were “BEXXAR and LYMPHOMA”

Now, if there was anything at this time that I did know it was that I didn’t want to go through the conventional cancer treatments that I had always heard of. You know, the through body radiation and chemo. Seems everyone I ever knew that had experienced the treatments first hand or knew someone that had, always had a secondary medical problem arise as a result of the treatment. Then there are the bouts of nausea, vomiting and just not feeling, good just to mention a few. Oh and that ever so popular ego altering loss of hair. So I was open to the idea of using some new age technologically advanced therapy. So I began to read about Bexxar (http://www.bexxar.com/) and Zevalin (http://www.zevalin.com/). They both worked against the cancer in the same ways so I was out to get either one. I just had to find a doctor and a facility that could administer them. I was scheduled to see an oncologist in a few days so I would ask then about that type of treatment.

The date is January 23 2008 and today I went to see the oncologist that the surgeon’s office had referred me to. Had a ct scan done then went upstairs and had a bone marrow sample taken for biopsy. OUCH! Anyway the Dr. preferred to wait for results before discussing possible treatment options. Two days later I was able to find out that the oncologist’s tests confirmed the surgeon’s diagnosis but now we know it’s at stage lV and that there was 15% involvement of the cancer in my bone marrow.

As for treatment he said that I could receive the typical chemo and radiation regimens but since I displayed no apparent symptoms of the disease and that the treatment would neither cure me nor extend the length of my life he suggested that I do what he referred to as “watchful waiting”.

Huh! I couldn’t grasp the theory of waiting for the cancer to spread for symptoms to develop before treating the problem. Like some test animal to see what it will do to me. If I can't be cured from this disease or even prolong the time I have left with conventional cancer treatments then I have to try something different. Not just for me but for all current and future NHL patients! So I asked about using Bexxar or Zevalin and was told that they couldn't provide that type of treatment but could find where I could. So this would be my second opinion that I suggest everyone should get. A few days later I received notification of an appointment with a Dr. Andres Forero-Torres at the University of Alabama Birmingham in March.

The month is March and I am ready to make a 120 mile one-way trip to UAB for my visit with Dr. Forero. As my wife and I sat in the examination room waiting I could hear the voice of a Dr. talking to another patient from another room down the hall. He sounded like the most comforting and cheerful Dr. I had ever heard. Then in walks this guy with this joking and humorous demeanor. We sat and listened to him explain my condition and treatment options and then he asked if I was still interested in "cutting edge treatment"? YES! He explained that he would treat me with either drug, Bexxar or Zevalin. It was My choice, but he would use Rituxin with Zevalin. He said that if it were him needing treatment this is what he would do. So feeling like I could put my life in his hands and feel good about it we said "let’s do it"! I had brought my ct scans and slides from the biopsy for him to examine but he and his pathologist would do that in the next day or two. I was at work a couple days later and I got a call from the Doc. He said "good news". After examining everything he was down grading me from stage lV to stage lll and this makes it more feasible for the treatment to be done now. All we had to do was wait for approval from my insurance company. This was referred to as "qualifying" for the treatment. This would come in about 3 weeks. ALRIGHT! I was feeling pretty good now knowing that the path of my treatment that I felt was shown to me from the beginning was on course and in Gods hands. I would receive my first treatment on May 5th.

As I waited for the 5th of May to arrive I continued life as usual. Knowing how the treatment was supposed to work I was thinking that I could go through the entire process until my blood counts fell to the point that I would have to stay home from work to avoid possible illnesses or infections. I would miss only a couple of weeks or so. GREAT! One month before I found out about my cancer a co-worker and Friend had been diagnosed with two types of cancer. While at work on April 30 the entire plant was called to meeting. Odie had just passed away. It hit me hard. Plus the fact that two of my neighbors had both died of cancer in the last year, I felt a little nervous now. The week end was here and I would be going for treatment on Tuesday. I thought things out over the weekend and decided that I would not go back to work until I completed my treatments and got my blood counts back to normal. I was going to let the drug do its thing while I was as relaxed and stress free as possible.

Here we go! We arrived at the Kirklin Clinic/UAB for my first treatment. First they sent me to the lab for blood work. Then they called me back to the treatment room. The administering nurse was kind and reminded me of some of the Rituxin drug reactions to be aware of. This was going to be administered through an iv and would take about 5 hours for the first one. So she hooked me up and started the drip. Twenty minutes in and I was feeling good but had to go to the restroom. So I got up from the bed that my wife was sharing with me. Wait a minute! Who's the patient here? I walked myself pushing my iv apparatus to the bathroom. When I got there, all of a sudden I started to sneeze. I couldn't stop sneezing. By the time I got back to the bed I had began to itch on my neck, ears and arms. The nurse had become aware of my sneezing and asked if it was from being cold or ? I said no and I was also itchy. She contacted the Dr. and got the ok to give me a steroid injection into the iv to counter the reaction. This worked within 20 minutes. The rest of the treatment went off without a single problem. Treatment #1 complete! Now I would make this 120 mile one-way trip once a week for the next 5 weeks. The next treatment took just about the same amount of time to complete and I had no reactions or problems. Treatment #3, 4, and 5 all went just as well and took less time, about three hours each.

Now after my infusion on week 5 I had to go to Nuclear Medicine to have a tracer amount of the drug zevalin put into my bloodstream. I had to return in two days to have a scan to see if the drug had disbursed to all of the targeted tumors within my lymph system. The results showed that it had reached all the tumors. I was looking forward to week 6 with great enthusiasm.

Its here! Today I am going to get the treatment that's going to remove my cancer. I showed up for my infusion of rituxin then three hours later I was heading for another building where I would get my infusion of zevalin. Less than one hour later it was done, Piece of cake! I guess if I was going to have any adverse reactions to the drug we were about to find out now? I had never felt pains or anything from or around the tumors (enlarged lymph nodes) but after receiving the zevalin and started walking out I could feel like a light burning sensation at all of the nodes that were the largest. Other than that I was feeling great.

Now all I had to do was wait to see if I would have any reactions and wait for my blood counts to drop. This is the only thing I anticipate happing as it is suppose to somewhere around week 5 or 6 after infusion. My Dr. wanted me to have my blood drawn once a week for the next eight weeks to monitor all my blood counts (CBC). Since I lived 120 miles away he agreed to let me have them done at the cancer center office I originally went to after my surgical biopsy and they could fax the results to him.

Here we are 4 weeks after treatment and everything is going along just fine. I feel great and I feel my tumors getting smaller and fewer with each passing week. My WBC (white blood count) is beginning to drop so now I have to start taking the necessary precautions. The next few weeks would prove to be the roughest time of the entire ordeal. My white blood count dropped to a low of 1.7 and I felt somewhat tired from time to time as well as fatigued. My red blood count dropped to a low of 3.9 and I experienced a little light headedness. My platelets dropped to a low of 50.0 and I experienced no effects of this. Into week 7 all my counts were returning to normal levels and I was ready to return to life outside of the house. I wanted to go back to work. I wanted to go outside and mow the yard, trim the bushes and I want to LIVE. However, the levels hadn’t gone up enough yet. My platelets were good and the rbc’s were okay but my wbc’s were still low enough to keep me away from socializing and returning to normal activities. That being the hardest part of it all! I have never been one to sit still for long periods. ACTIVE! That’s me. Doing something all the time. I was scheduled for a ct scan on August 26th, a couple of weeks away at UAB so I had decided I would not return to work until finding out the results of the scan plus I new my blood counts would be back to normal then and I could resume life as usual.

It’s here! The day I get the official results of my zevalin treatment! Did it work? Well I knew for sure that it did. I never had a doubt in my mind that was going to work. We arrived at the clinic had my blood drawn, had the ct scan done and waited to see the Dr. for the results. We were sitting in the examining room for about five minutes and in walks the doc. He stops in the doorway and stops momentarily and says “it’s all gone”. What a rush! My wife and I both let out a sigh of relief and let loose the tears of joy. God had led us through the journey of our lives with complete confidence as only He can. After the hugging and thankful expressions between us all my Dr. said that he would have do my first maintenance therapy session (another infusion of rituxin) in a couple of weeks, three months from the zevalin infusion and another therapy session and a ct scan in November.

It’s September 5, 2008 I have been at work for a whole week, working around the house and everything is as usual. I could not have done it all without the patience, love and support from my wife. Without the prayers and support from all my family and friends and all the members of the many churches across the country. Most of all, I thank God! With out him I couldn’t have had the calm and courage I had when I learned of my cancer. I wouldn’t have been led to the treatment and the doctor to work as his hands.

There were precautions I had to adhere to after getting the zevalin. For the first couple of days I couldn't spend much time being right next to someone else. I couldn't sleep with my wife. I had to urinate sitting down, so as not to splash anywhere. Plus, the use of a condom during sex is recommended for the first year. That’s pretty much it!

My reactions or side effects to the zevalin were virtually non-existent. I had no problems! I never experienced any ill feelings of nausea, vomiting, weakness, loss of energy or hair. I did notice that after starting the rituxan infusions I would get these feelings of anxiety. They were just sudden momentary events of that feeling you get in the center of the chest, for example when you see those blue flashing lights behind you while driving. Kind of like the heart skips a beat then hits real hard and fast for a couple beats. It would only last for a second or two and not happen again for some time, but several times a day. As time goes on the events occur less often and become lighter in intensity. As I write I recall the last time I felt this feeling was a few days ago.

**Friday November 7, 2008**
Its been nearly five months since I completed my treatment. I just went and had my second maintenance dose of rituxin ct scan on the 5th and the results show, "no active cancer".
I have been doing great. I have been at work through this cold and flu season hoping I wouldn't catch anything. I don't take the flu shots and so far so good. My wife had about with a cold or something for about a week and I made it through that too. During my drive to Birmingham on the 5th I began feeling some pressure in my sinus with a slight headache. The sinus thing I wasn't sure of but the headache I attributed to the fact that I had not had any food or drink, coffee to be more exact, since I was going for a ct scan. At one point I even felt a little nauseous. By the time I reached the clinic I was feeling alright. I had my blood drawn then went to radiology for scan. Had my iv inserted and drank my barium and awaited my turn on the scanning machine. About half way through the process I really started feeling like I was going to get sick. Just then the technician came in and got me out in time to barf in the trash can. Then we finished the scan.
I then went to see my onc doc and found out he wasn't there so I would see a nurse practitioner. I was scheduled for infusion at 10:30am and waited til 12:30 before being called in. There was good news! The rituxin infusion would not take three hours no more. Now its done in 90 minutes. They gave me my pre-meds (Tylenol, Benidryl and steroid..?) and began the iv. Now something began to happen that I had not felt before. My legs were feeling like they couldn't stay still (restless leg syndrome). My nurse said it was from the benidryl. Why did I not feel this before? Why now? About 30 -40 minutes later I felt better. There was another man that had been there for 6 hours and was standing for 3 of those 6 hours due to the same feeling in his legs. Needless to say I completed the process and felt just fine by the time I left and got some food in me.
I feel as though I never had a medical problem. I feel GREAT!

(to be continued)



Hi Don, I am new to this site and have found it to be very uplifting as we are currently being fed a lot of negative facts from our doctor and hospice at home care givers (a service recommended by our doctor) My girlfriend of 10 years has Non Hopkins lymphoma and is currently into the start of the 6TH week of her first Zevalin 90-Y treatment and has been informed that her blood counts have dropped to a very low concerning level. She has a problem with infusions as her late husband (who also died from cancer), had a very bad reaction to his very first infusion and she feels that this was what actually led to his untimely death and of course this has left her apprehensive and scared of this form of treatment. She also developed lymph-edema about 30+ pounds of weight gain (from a pant size of small to an XXL), which we are currently visiting a CLT Therapist for treatment with some signs of success. She is also experiencing an eating difficulty due to gastritis, irritated abdominal disorder, and various stomach disorders associated with the same (Cancer and medication side effects): In other words it hurts to eat and she has lost a lot of upper muscle mass and strength due to this problem (uncertain about the lower half due to the edema; But, more then likely it is in the same condition), which has currently left her in need of a wheelchair for mobility. We haven't a clue as to when and if she will receive any testing to find out the results of her Zevalin treatment as it is beginning to appear as if her Doctor has already given up on her (?), as he has stated that there is nothing else that he can do for her beyond this Zevalin treatment. Did you experience any of this problems (or know of someone else who has); And, would you consider these symptoms to be normal; And, possibly have any good advise for us in dealing with them. Steve & Carolee (scbell54)

hilde451's picture

I am wondering how you are doing? I am hoping you are doing really well.
I am still in remission for now. I am glad but always have this stuff on my mind.
Just have been wondering how you are doing?
I just dont see too many people getting the Zevalin.
Please let me know how you are doing.

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