February 2020 – Dave’s health blog

Dave got his second RCHOP chemo treatment on February 18th. We met with Heidi beforehand, who suggested that we drop his blood pressure meds until further notice, even though BP was a tad high at 136/74. Dave said that was nowhere near the old high, despite having not taken lisinopril that day, attributing at least part of the variance to his deliberate loss of 40 pounds since late summer. Vitals/labs: normal sinus rhythm, 95% oxygen saturation, 80-81bpm, 5800 WBC, not anemic, not neutropenic — all as expected three weeks following the first chemo cycle. Potassium was down, however. Heidi suggested foods higher in potassium or even a pill.

Dave said the only nausea he’d had up to that point were some hiccups after large meals during the first two days after the first RCHOP infusion. He reported regular, healthy bowel function, nothing unusual, no nose bleeds, and stable weight. Additionally, he reported occasionally going for walks, but not long ones (1.5 miles per day instead of the normal five) and an increased need for bed rest. Heidi suggested that he remain upright if finds he’s spending protracted periods in bed.

Dave reported that he’s been getting a half gallon of fluid per day, adding more juice to account for taste variances in water. I recommended tomato, V8, or virgin Mary juice (e.g. Snappy Tom) as a way to get more electrolytes if pedialyte or Gatorate wasn’t palatable. Dave isn’t a fan of tomato juice, but I reminded him that taste changes dramatically on chemo, so it might be worth a try. He seemed unconvinced.

Dave said Claritin and rinses with Act mouthwash were helping with headaches and teeth tingling. He prefers Act to salt and baking soda rinses. Consensus is that the headache and teeth pain are probably more likely side effects of Neulasta (i.e. time-release GCSF to augment neutrophil synthesis) than they are ones of prednisone. Additionally, consensus was that the prednisone had reduced his urinary symptoms (peeing every four hours now instead of every 90 minutes). Perhaps it has helped to regress the prostate cancer?

Dave reported that he will be seeing his blood pressure doctor, Dr. Moen, on 3/10, though he might cancel that since he won’t be taking meds.

Dave also reported that his appetite is good, that he hasn’t canceled any planned activities (his energy level is about 85%), and his hair started coming out on 2/13, with lots showing up on the pillow and hairbrush. Heidi confirmed that the fatigue accumulates from cycle to cycle, so Dave’s energy level will likely continue to drop. She suggested that walking will help keep it up.

Heidi palpated his mandible and abdomen and found no irregularities or lumps.

We also saw Dr. Patel who said that Dr. Lily replied to his email, recommending Lupron for androgen deprivation therapy (ADT) and bicludamide to reduce “flare.” Flare is a side effect of the ADT that causes testosterone to spike during the first two weeks of ADT, which is counterproductive. ADT is by intramuscular injection once/quarter. Bicludamide is one pill/day for two weeks. Treatment with both of these drugs began on 2/25.

Dr. Patel confirmed that it’s not uncommon for prednisone to relieve prostate cancer symptoms, but it wasn’t useful to check PSA on 2/18 since it wouldn’t in any way guide treatment. The plan is to check Dave’s PSA two weeks after beginning ADT, so around 3/10.

Dave said treatment prices have been weird. For example, he got a notice that the pharmacy had submitted a bill for $1200 for a single sublingual Zofran pill. Dr. Patel stopped just short of referring to insurance and treatment pricing algorithms as voodoo.

We met with Heidi again on 2/25 where Dave continued to report an absence of fevers and chills, tarry stools, new allergies, and nose bleeds, however he also reported increased fatigue, worsening tooth pain (planning to switch to Claritin tablets and away from apparently ineffectual sublingual lozenges, i.e. “ready tabs”), some minor vomiting with hiccups, increased constipation (added additional fruit cups and oatmeal to remedy), and a need for more naps. He confirmed that as expected, the second RCHOP cycle on 2/18 had affected him worse than the first one.

BP was 126/78, oxygen saturation was 97%, and heart rate was 84bpm on 2/25. Labs revealed neutropenia and reduced red blood stats, as expected. Heidi reported that red blood stats will continue to trend down from cycle to cycle, but we’re far from needing a transfusion.

Heidi ordered one liter of IV fluids infused over two hours (both Dave and I were confused about the long duration). Dave and I chatted and ate lunch during the first part of the infusion. He received his ADT and anti-flare meds after I left.

The plan is for the next RCHOP cycle to happen on 3/10. About 10 days after that will be the half-way point in his lymphoma treatment.

Dave and I went and saw Heidi, head nurse in Dr. Patel’s clinic. Heidi was a lead at Swedish when I got my inpatient chemo in 2010 and is definitely the real deal. She asked about his symptoms, to which Dave replied that he had a mild headache, which he blames on the prednisone (the “P” in RCHOP), that he’s a little constipated, and that his teeth hurt (which Heidi blamed on the Neulasta stimulating his bone marrow to make more white blood cells). Heidi noted that Dave’s affect was “solemn.”

Heidi encouraged Dave to be mindful about the constipation, erring on the side of caution, since straining can cause fissures in the intestine, which are dangerous when platelets are low. I recommended polyethylene glycol (Mirilax), and Smooth Move tea (senna) or bisacodyl (Dulcolax). Heidi agreed, offering that Senokot is another good choice for stimulant-based relief, and adding that sitz baths can also be effective. My personal experience with sitz baths… or walking… is that they are not useful, Dave’s mileage may vary. Dave replied by saying he uses oatmeal and fiber mushes that work just fine. He said he also consumes about a half gallon of water/day.

Heidi said that Dave’s teeth aches could spread to his sternum or other bones because he’s neutropenic, and encouraged him to preemptively treat that with Claritin.

Dave said that he’s had a low appetite and has been eating lots of carbs. I asked Dave if the chemo was affecting his taste buds and he said indeed it was, and that he wasn’t adjusting to it very well. I recommended strong, bitter flavors like cherry blossom tea, and frequent salt/baking soda rinses, which is generally a good idea to deal with mild mucositis anyway. Heidi recommended frequent small meals. I think Dave said he was down six pounds in the last week.

Dave takes his temperature twice/day. Highest he’d seen to date was 99.1 F.

Dave’s labs showed that his kidneys are strained, as expected. Creatinine was high, sodium was low, neutrophils were low, glucose was high (probably due to steroids), other blood stats were unremarkable. BP was low at 82/48. Pulse was between 69 and 73. Oxygen saturation varied between 94 and 98.

Dave’s energy level dropped pretty low while we were talking and he got clammy so Heidi elected to put him in a wheelchair and expedite IV fluids to normalize his sodium and creatinine, and perhaps help with blood pressure. She also recommended pedialyte or Gatorade to keep electrolytes high, and to skip lisinopril and chlorthalidone on low blood pressure days (like below 90/60 on waking — suggested checking BP two or three times before making the call each morning). Dave said that his BP has been about 127/85 on days where he skips his lisinopril.

Heidi said that even though Dave’s temp remains normal, it could just be that his body is unable to generate a fever. She encouraged him to be wary of shaking and chills, even if non-febrile.

Dave’s next chemo infusion is 2/18. I’ll probably join him for most if not all of that. Dr. Patel has already emailed Dr. Lily (a week or two prior) about combining androgen deprivation therapy (ADT) with his chemo. Dr. Lily had not replied as of 2/5. Heidi indicated that she’d rattle the appropriate cages. We need Dr. Lily’s authorization and some medical advice before doing it (e.g. regarding potential concomitant administration of biclutamide and GnRH antagonists).

Heidi’s visit notes (paraphrasing):

received 1.5 liters of normal saline
severely immunosuppressed — be mindful of good hand washing, oral hygiene, and avoid those that may be ill
notify Patel’s office in the event of a 100.4 temp or higher, fever, chills, or any other concerns
next RCHOP on 2/18
hold chlorthalidone for next couple days