About My Cancer

Cancer. What a bitch.

You never ask for anything to go wrong but the instant you think you have a grasp on what ‘life’ is a twist or turn is thrown your way and you either deal with it or cower and wait to die. The following my my cancer story and how I came to be the regular guy turned cancer patient turned cancer survivor… I hope it provokes some thoughts.

Warning: my writing style is raw and real so if your eyes will start to burn if you see words like ’shit’ and ‘fuck’ then perhaps you should pick up a copy of Highlights or something less caustic…

Peripheral T-cell lymphoma

So, My name is Gary Zullo and I have cancer. I never asked for it but I got it, and now what do I do with it? I’ve chosen to  fight it with all my power and might. I cannot and will not allow a random mutation in my T-Cells to cause unbelievable pain for my family. Well, that’s fine and perhaps even admirable but what do you have and what’s the treatment going to entail?

Peripheral T-cell lymphoma accounts for about one in 100 of all cases of NHL (Non-Hodgkin Lymphoma). It can occur at any age from young adulthood to old age. It is slightly more common in men than in women. That’s right folks … I have a RARE form of lymphoma (which is already pretty rare). Something on the order of 3% elite; go me!

It is a type of T-cell lymphoma, and the abnormal T-lymphocytes are found in the peripheral circulating blood. Peripheral T-cell lymphomas can also be subdivided into different types.

Some sub-types of peripheral T-cell lymphomas are quite rare in the western world. They are more common in the far east in countries such as Japan and China, where a viral infection called HTLV-1 is very common. HTLV-1 infection can make people more likely to develop some types of peripheral T-cell lymphoma. Sometimes T-cell lymphomas mainly affect the skin and are known as cutaneous T-cell lymphomas (CTCL). I didn’t experience that form thankfully.

My type of cancer is usually diagnosed by taking out an enlarged lymph node or some such and biopsying it. Unfortunately, I am a lab abnormality and as such the only symptom I exhibited was a low platelet count (95 at time of diagnosis)

Staging

The stage of NHL describes how many groups of lymph nodes are affected, where they are in the body, and whether other organs such as the bone marrow or liver are affected.

• Stage 1 The lymphoma is only in one group of lymph nodes, in one particular area of the body.
• Stage 2 More than one group of lymph nodes are affected, but all the affected nodes are contained within either the upper half or the lower half of the body. The upper half of the body is above the diaphragm (the sheet of muscle underneath the lungs), and the lower half is below it.
• Stage 3 Lymphoma is present in lymph nodes in both the upper and the lower parts of the body (ie in lymph nodes both above and below the diaphragm). The spleen is considered as a lymph node in this staging system.
• Stage 4 Lymphoma has spread beyond lymph nodes to other lymphatic organs, for example to sites such as the bone marrow, liver or lungs.

The stage usually includes the letter A or B, which describes whether the B symptoms are present or not (eg stage 2B). Sometimes the lymphoma can start in areas outside the lymph nodes, and this is represented by the letter E, which stands for extra-nodal (eg stage 3AE). I was a stage 4E because I had involvement in my CNS, blood, marrow and spleen.

Grading

For practical purposes, non-Hodgkin lymphomas are also divided into two groups – low- and high-grade. Low-grade lymphomas are usually slow-growing, and high-grade lymphomas tend to grow more quickly.

Peripheral T-cell lymphoma behaves as a high-grade lymphoma and usually needs prompt treatment. I was actually a mid-grade … not quite indolent but nowhere near as agressive as it should have been.

Treatment

Chemotherapy

Chemotherapy| is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It is the usual treatment for peripheral T-cell lymphoma. It can be quite difficult to treat successfully, although some people are cured by chemotherapy, and in others chemotherapy can often reduce and control the condition for a period of time. This was my “1st line” treatment. Meaning, I went from healthy Gary to chemo treatment in the span of two weeks. Will it clear the lymphoma? Doesn’t sound too promising but it was better for me than a huge and dangerous surgery that also may not work. People like me most of the time fight this for the rest of their lives. I may  not be any excpetion but I hold out hope anyway

Some other treatments

Radiotherapy

Radiotherapy| is the use of high-energy rays to destroy cancer cells, while doing as little harm as possible to the healthy cells. If the lymphoma is stage 1 or 2 (only affecting lymph nodes in one area of the body), a combination of chemotherapy and radiotherapy may be used.

High-dose treatment with stem cell support

High-dose chemotherapy, with a bone-marrow or stem-cell transplant|, has been used for some patients. This type of treatment involves having very intensive chemotherapy and sometimes radiotherapy.

As side effects can be severe, this type of treatment is generally not given to people over the age of 60–65. This is because the intensity of the treatment increases the risks of serious side effects for people over this age.

Steroid therapy

Steroids| are drugs which are often given with chemotherapy to help treat lymphomas. They also help you to feel better and can reduce feelings of sickness|.

Clinical trials

New treatments for peripheral T-cell lymphoma are being researched all the time, and you might be invited by your doctor to take part in a clinical trial |to compare a new treatment against the best available standard treatment. Your doctor must discuss the treatment with you, and have your informed consent before entering you into any clinical trial.

I was actually in one of these trials. I travelled up to the NIH every 21 days and received an infusion of EPOCH-R-S over a 5 day constant treatment….for 6 rounds. Grueling? You betcha!

The dose-adjusted EPOCH-R regimen is a 96 hour infusion regimen, developed in an attempt to overcome drug resistance. The observation had been made studying cells in culture that tumor cells were more sensitive to low doses of chemotherapy given over longer time periods than to higher “bolus” doses. The drugs used in the EPOCH-R regimen are similar to those used in R-CHOP (etoposide, adriamycin, vincristine, cyclophosphamide, prednisone and rituximab), but the etoposide, adriamycin and vincristine are give as a continuous infusion. Another difference between the EPOCH-R regimen and R-CHOP is that the doses of adriamycin, etoposide and cyclophosphamide are adjusted after the first cycle of chemotherapy based on the nadir abolute neutrophil count, so that the patient can be given the maximal “safe” dose of chemotherapy.

A recently published study of EPOCH has shown impressive results: 50 patients with de novo large B cell lymphoma, complete responses were obtained in 45 patients (92%) and partial responses in 4 patients. With a median follow up of 62 months, the progression-free survival is 70% and the overall survival is 73%. The regimen was well-tolerated with an 8% incidence of fever and neutropenia. The addition of rituximab to the regimen in a more recent phase II study looks even more promising: at a median follow-up of 26 months, the progression-free and overall survival are both 82%.

So in a nutshell that’s my new nemesis. Looks like we’ll be dealing with one another for quite some time to come. I’ll update this as new information becomes available.