Treatment Adjustments

Two days before every chemo infusion, I have a half-hour appointment with my doctor to review the results from the last chemo cycle.

Doctor Leeksma was quite pleased with the round 1 results. In fact, he even used the word "impressive". I told him that all outward signs of the tumor disappeared by Day 3 and I stopped taking pain medications by Day 5. He checked the site of the lump himself and didn't see any evidence that there was ever anything there, except for the small scar where they inserted the biopsy needle.

I told him that I suffered from nausea for 10 days, as well as non-stop burping for a few of those 10 days, and he indicated that they might be able to fix that.

My new regimen is:

100 mg Prednisolone every morning to kill tumor cells
1 Granisetron (Kytrol) tablet morning and evening to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl 3 x a day to be taken for nausea after Chemo Day 3
500 mg Magnesium Hydrochloride PCH with every meal for constipation
40 mg Pantecta every morning for acid reflux and burping

So basically, compared to the previous cycle, we dropped the Allopurinol, which he said was no longer needed because I did not appear to have any kidney reactions, and added Pantecta, which would help with the nausea.

This particular combination appears to be the winning one. I was nauseous only on the first day, but that was probably because I took the Granisetron late and didn't take the Pantecta at all. The following days, I had slight nausea in the morning but hardly any nausea for the rest of the day. The main issues I experience now are hyperactivity and sleeplessness (from the prednisolone) and residual coughing. I tried to get a prescription for codeine so I could sleep at night, but the doctor recommended that I avoid cough medications if I can. And it turns out that the coughing is not so bad now.

Besides the drug changes, we also spent some time discussing the further course of treatment. My brother told me that in the States, they would probably have done a PET scan and full CT scan at the beginning of treatment and after the third cycle.

My doc says he plans to order a full CT after the 4th chemo cycle. If after the 8th cycle, there's still residual tumor, he will order a PET scan to make sure that it's not active. It seems like they don't generally do PETs here as much as they do in the States, which may be a cost or radiation issue. I asked my brother later if he thought I should be more assertive in asking for an earlier PET scan. His (paraphrased) reply was:

"Let me run this by one of my attendings. As a standard, we do PET scans or gallium scans (functional imaging) prior to starting treatment and then repeat until it's negative. I can't say that he's doing anything wrong because there are few studies for this lymphoma. In other tumors, we would consider changing therapy if the PET didn't become negative after 4 cycles. We would even consider changing after 2 cycles if there wasn't significant improvement. I feel the problem with waiting until after 8 cycles is mainly that you have no prior scans for comparison, and the PET scan is overly sensitive and sometimes you can't tell what is tumor and what's not or what's new and what's old."

After his reply, I felt better because I'm confident that the current treatment is working just fine and doesn't need to be changed.

Yesterday, I was doing some research on the internet and stumbled on an article that seemed to indicate other regimens (e.g., MACOPB) combined with radiation produced the best results for mediastinal diffuse large B-cell lymphoma. I asked my brother about this too:

"I did look at these studies. Most people in the US would use R-CHOP. Those other regimens are not commonly used in the US. These regimens are probably more common in Europe, where they tend to favor stronger chemo regimens. There's not an obvious advantage for the more intensive regimens and have the price of higher toxicity and some require hospital stays for a few days to get the chemo in. Additionally, none of those regimens used Rituxan which should improve outcomes significantly. My attending, who has over 20 years of experience with lymphomas, would use R-CHOP."

"The radiation is a different story. I'm not sure how big the tumor was before starting chemo, but we tend to use radiation if it was big. We would probably use 6 cycles of R-CHOP followed by radiation. The drawbacks to radiation are that it can cause future health problems, such as early coronary heart disease, damage to the lungs, etc., although they carefully monitor how much radiation you actually receive. It seems that your doctor is using an extra 2 cycles of RCHOP in lieu of radiation because you're young and he doesn't want to cause long term problems with radiation. Difficult to say if this is right or wrong because we don't have the studies to tell us. These are more subtleties of medicine which you can argue for either side. I can only tell you what my attendings or I would do."

Again, I felt reassured after this explanation, as I remember that my doctor specifically stated he would prefer that we try chemo instead of surgery or radiation because I'm still young and both have such damaging long-term effects.

The Treatment

My doctor is a slightly-disheveled busy-looking man, perhaps in his 40s, with round glasses and kind features. He speaks near perfect English and seems very competent. Both Aylee (my Dutch colleague who comes with me to this appointment) and I am relieved.

The treatment is standard R-CHOP chemotherapy, to be administered every 3 weeks for 8 cycles. Thus, 6 months in total. There are usually fewer chemo cycles involved, but my doctor thinks that for a tumor this size, 8 will be required.

After 6 months, I'll get a full CT scan and a bone marrow biopsy, to determine whether there's any cancer still present. If there is, then we'll discuss the possibility of radiation treatment.

The decision of when to receive the bone marrow biopsy resulted in a little mental tussle between me and the doctor. It's standard practice to have one at the start of treatment, but I didn't see the point. The doctor admitted that the results of the biopsy wouldn't change the treatment plan one bit; it would only change prognosis. In general, spread to the bone marrow with this sort of cancer is a rare occurrence. I didn't think it would benefit me much to find out that my prognosis was worse than expected; in fact, it would probably only serve to dampen my spirits. I argued instead to have the biopsy as a check at the end of treatment, and in the end, he agreed.

Because the cancer symptoms seem to be worsening so fast, and I am anxious to start treatment immediately, the doctor also agrees that I can start taking prednisolone along with alluprinol that very day. He schedules my first chemo treatment for Friday, which is the earliest I can get one. I have an appointment with the nurse to discuss the treatment on Thursday morning.

He also very rapidly fills two prescription pad sheets with an arsenal of the drugs that I am to take orally at home.

Prednisolone to kill tumor cells
Slow-release Oxycodon HCl Sandoz for the pain I was having at night
Fast-release OxyNorm, in case the Oxycodon wasn't enough
Kytrol to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl to be taken as needed for nausea anytime after Chemo Day 3
Magnesium Hydrochloride PCH, for the common side effect of constipation
Allopurinol Sandoz 300, to prevent kidney complications

Then, from the front desk, I get a thick binder listing pages and pages of potential side effects and what can be done to address them, all in Dutch, with a promise that all my other questions will be answered in due time during my Thursday interview with the nurse.