To wrap up this crazy long piece on the background of my diagnosis, here’s a little information on what it actually is, what my treatment plan looks like, and what I can expect in the future.
My official diagnosis is stage 4 indolent b-cell follicular lymphomain the kidney and skin. (Stage 4 sounds scary, but hold on and I’ll explain what that really means in a minute.) Dr. Daniel believes the kidney is most likely the primary source of the lymphoma with the skin being a secondary location. When receiving a cancer diagnosis, there are two important factors that help the doctor determine the proper course of treatment: the grade and stage of the disease.
Grading is typically either low, intermediate, or high. Mine is low grade (indolent), which means that it is slow growing (not aggressive). This is good news; however, indolent follicular lymphoma is not currently a curable cancer. It is considered a chronic cancer that will most likely appear again either in the same location or another location.
Staging for lymphoma has four levels. Mine is stage 4 because 1) it involves an organ and 2) because it is in more than one location with one of those locations being above the diaphragm and the other location being below the diaphragm. Stage 4 lymphoma sounds terrible, but is not quite as awful as stage 4 when you are dealing with systemic cancers that have metastasized throughout your body. Staging in lymphoma has more to do with the location of the disease than how advanced or aggressive it is.
Dr. Daniel selected Rituxan and Bendamustine as the drugs of choice for my treatment. Rituxan is monoclonal antibody that specifically targets only cancerous cells. Bendamustine is more a general drug that goes after fast growing cells, but it does not strictly attack just cancerous cells. Bendamustine is more of a traditional chemotherapy drug that goes after good cells, too, such as the fast growing cells in your stomach, mouth, and hair. When used in combination, these two drugs have proven to be very effective at pushing non-hodgkin’s lymphoma into remission.
These two medicines are somewhat mild compared to some chemotherapy drugs, and the side effects are not anticipated to be as severe as what many people experience. Fatigue will be my greatest challenge, followed by mild nausea, flu-like symptoms, loss of appetite and nasal congestion. Dr. Daniel feels it is not likely I will lose my hair, but it is a possibility. Most likely, my hair will thin a bit. How much? We just don’t know yet. I expect to see something happen around the four week mark.
The goal of my treatment is to send the lymphoma into remission. How long it will stay in remission, we don’t know. It could be 10 years. It could be 10 months. If it recurs quickly, Dr. Daniel said he would likely refer me to a more specialized facility like Vanderbilt to be evaluated for a stem cell transplant. The prognosis for me with indolent follicular lymphoma is another unknown that depends on how well I respond to treatment, how long it stays in remission, and what treatments are available when it shows up again. It’s possible that some of the treatments currently in trial might be available by the time it recurs and they could actually cure it. Let’s hope and pray that’s the case!
The treatment plan has me going for infusions (a round of chemotherapy) every four weeks for 4 – 6 times. Basically, it means I will have treatment once a month for 4 – 6 months. Treatments are over a two-day period, with the first day being a longer infusion and the second day being a short infusion. My next treatments are scheduled for September 7 & 8.
It would be easy to freak out and worry about all the what-ifs because even though we have a diagnosis and have started treatment, there are still a lot of unknowns surrounding the outcome of treatment and remission. But God doesn’t tell us to worry, He tells us not to be anxious and not to fear. So that’s how I’m moving forward, with a faith in God and confidence that He is always in control.
I would love it if you would join me in praying the following:
- Pray that this treatment regimine is effective and sends the lymphoma into remission for a long, long time.
- Pray that four rounds of chemotherapy will be enough.
- Pray that there is no permanent damage to my kidney either from the cancer or from the treatment.
- Pray that a cure for all cancers will be discovered soon.
Oh, and if you don’t mind, pray that my kidney responds quickly so that the stent can come out soon! Thank you very much. :)