Possible Treatment Option

Well, tomorrow I see the hematologist/oncologist. Of course I don't know, but I think I am getting closer and closer to treatment time. I hope not, but I have to be prepared. The more I read about FCR, the less I like it as a first time option. David Arenson's post (see link to the left) from December 07 titled "The Three-Day Rule," came at just the right time for me as I was exploring options.

If necessary tomorrow, I will be discussing with the doctor a much less toxic, one-agent treatment, Rituxan, a monoclonal antibody. If I could get the lymph node swelling down, I think I would feel better, at least maybe not constantly thinking about it. Because it causes my neck to feel like the beginning of a stiff neck, every time I turn my head, it reminds me I have Leukemia/Lymphoma all the time.

IF successful, it can reduce the nodes but doesn't cure the lymphoma (there is no cure). Some of the patients on my on-line support group have had success with the treatment. It works in 52% of cases and can last for almost a year. It can have some serious side-effects, including death (now that would be serious), but that is rarer than with the other treatments. When you go to the manufacturer’s website, the warnings are right there up front.

From that site, other sites I went to, and the personal testimony of those on the ACOR list, I have learned that the majority of patients experience infusion-related symptoms with their first Rituxan infusion. These symptoms include but are not limited to, flu-like fever, chills/rigors, nausea, uticaria, headache, bronchospasm, angioedema and hypotension. These symptoms vary in severity and generally are reversible with medical intervention. The first infusion is usually done very slowly over about a 10-12 hour period to try and avoid these as much as possible. Most times they give you an infusion of Benedryl first and sometimes Tylenol before the Rituxan. Sometimes long-lasting rashes develop, and renal failure can occur, but again, not as common.

On one of the websites, the following side effects are listed and quoted below:

More common: Black, tarry stools; bleeding gums; bloating or swelling of face, arms, hands, lower legs or feet; blood in urine or stools; blurred vision; cough or hoarseness; dizziness; dry mouth; fatigue; feeling of swelling of tongue or throat; fever and chills; flushed, dry skin; flushing of face; fruit-like breath odor; headache; increased hunger; increased thirst; increased urination; itching; lower back or side pain; nausea; nervousness; pain or tenderness around eyes and cheekbones; painful or difficult urination; pale skin; pinpoint red spots on skin; pounding in the ears; rapid weight gain; runny nose; shortness of breath; skin rash; slow or fast heartbeat; sore throat; sores, ulcers or white spots in mouth or on lips; stuffy or runny nose; sweating; swollen glands; tightness of chest; tingling of hands or feet; troubled breathing; troubled breathing with exertion; unexplained weight gain or loss; unusual bleeding or bruising; unusual tiredness or weakness; vomiting; wheezing

Less common: blistering, peeling, loosening of the skin; blisters in the mouth; blisters on the trunk, scalp or other areas; burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feeling; burning, tingling, numbness or pain in the hands, arms, feet, or legs,; confusion; decreased frequency and amount of urination; diarrhea; difficulty in moving; discouragement; feeling sad or empty; increased thirst; irregular heartbeat; irritability; joint or muscle pain; loss of appetite; loss of interest or pleasure; muscle pain or stiffness; muscle cramps; nervousness; numbness or tingling in hands, feet, or lips; pain at place of injection; pain, swelling, or redness in joints; red, itchy lining of eye; red skin lesions, often with a purple center; stabbing pain; trouble concentrating; trouble sleeping; swelling of face or fingers; swelling of feet or lower legs

Rare: Chest pain; renal failure; death

This medicine may also cause the following side effects that your doctor will watch for:
Less common High blood pressure; low white blood cell count

Other side effects may occur that usually do not need medical attention. After Rituxan is administered, large numbers of tumor cells are immediately destroyed (lysed) and eliminated from the body. In 4-5 out of every 10,000 patients the products from the dead cells cannot be eliminated quickly enough and a syndrome called tumor lysis syndrome occurs. This is characterized by a rapid decline in kidney function and a sudden accumulation or decrease in minerals such as potassium, calcium and phosphate to dangerous levels. Tumor lysis syndrome occurs when the size of the tumor or the number of tumor cells circulating in the blood is large, usually within 12-24 hours after the first dose of Rituximab.

Hmm, now that I read all that, doesn't sound so pleasant after all! However, usually what my fellow patients have reported is only the fever and chills. A few have reported they had no side effects at all. A couple reported more serious effects.

Rituxan uses Rituximab, a monoclonal antibody. It is used to treat several types of non-Hodgkin’s lymphoma. It is made from mouse proteins or, one site stated, Chinese Hamster Ovary (I may develop a strong desires for cheese, having litters of babies, or running in circles inside and around wire wheels). It is funny that the manufacturers web site said to tell your doctor if you are allergic to mice or rats. Hmmm, how does someone know that? I have a strong aversion to them, does that count?

Anyway, Rituxan attacks and kills both the cancerous and normal B cells, but the normal cells quickly rebound. I think it may be worth a try. Hopefully it would have an effect on the fatigue, also. It is quite expensive and I believe it is still considered experimental for CLL. I haven't checked to make sure my insurance covers that, but I assume it will because so many have used it for CLL.

Susan LeClair, one of the professors who answers our questions on the ACOR list, once stated, “Traditional chemo can not be used as aggressively as these monoclonal antibodies can because the damage that is done to the bone marrow is too great. Traditional chemo has to be stopped when the counts for plts, rbc and grans get too low. The monoclonals do not have this problem so they are the perfect choice to use against malignant cells in a person whose marrow needs some protection or relief.

Dr. Terry Hamblin, a world-renown CLL expert, has posted the following to our list. I am putting it here to help those who are not members of that list understand our options.

“Remarkable advances have been made in the understanding of CLL in the past 6 years. What has not been found, however, is a single underlying lesion to account for the disease. Other chronic hematological malignancies like polycythemia vera and chronic myelocytic leukemia do have a single genetic lesion.

Therefore, at the moment we don't have a single target to aim at, and our treatment has to be relatively non-specific.

Chlorambucil bashes all bone marrow cells and all immune cells. Fludarabine bashes T cell especially. Campath kills all lymphocytes as well as monocytes and dendritic cells. Rituximab kills all B cells. Newer antibodies like anti-CD23 do not seem so effective.

Even if we had a guided missile that targeted CLL cells specifically, tumors like CLL are devious in their way of avoiding attack and resistant forms might arise.

I suspect we will have a cure in out lifetime, but it will be a war of attrition.
Terry Hamblin”

Well, I shall close for tonight and see what the doctor has to say tomorrow. Pray for good news.