Category: General News

Sorry I haven’t posted anything in over six weeks; I started a new job on 5/26 and I’ve been very busy (but in a good way!) 😉

I joined Dave for his last cycle of CHOP on 5/20. At that time he said he was getting noticeably better each day, not just because he was recovering from his previous cycle, but also because of the choice to remove Rituxan from his protocol. For example, he said he could do three flights of stairs before getting winded, when before it was only one; he also said he could carry two bags of groceries now instead of one and he was able to carry his trash all the way to the dumpsters, a good block away.

He reported normal stool and continued runny nose on his 5/20 visit, and also that the Vincristine-induced neuropathy in his fingertips had gotten bad enough that it was starting to affect his typing; fat-fingering keys and getting a cramp once. I spoke with him yesterday as well, when he reported both the neuropathy and the runny nose were still bothering him, along with some “stickiness” on his skin. For me, it took a few months to recover from the neuropathy, so it’s not unexpected that Dave continues to have symptoms.

Dave completed his pulmonitis-related prednisone Rx recently, tapering down to 20mg over several weeks and then eliminating it entirely, but it took a while for his appetite to drop back down to normal. As a result, his weight is back up in the 190s. There’s been no evidence of adrenal insufficiency. He also reported his hair is starting to grow back, and that in spite of getting another Lupron treatment on 5/20, he had to shave his beard recently. (Come to think of it, that might have been related to the prednisone.)

Back to the 5/20 visit: LDH was 223 so it was continuing to drop (good), anemia was still there, BP was 110/66, heart rate was 85 bpm, pulse oximetry was 96-98, temperature was 98 F, and lungs were clear. He took a lap around the ward, and pulse oximetry only dropped to 95.

Dr. Patel recommended that Dave visit a physiatrist on Cherry Hill for physical therapy, probably to assess and track his neuropathy as much as anything else. He also continued his sulfamethasone therapy.

Dave will be getting a PET this coming Wednesday, July 8th at 6:45 AM. While I’m probably brave enough to join him at that time, I’m not feeling comfortable about taking a full day off work just yet, so instead I’ll just be meeting him for his visit with Dr. Patel later in the morning. Hopefully, preliminary scan results will be in and will have some good news to share.

Dave got his mid-treatment PET scan almost two weeks ago. It showed that he’s had a partial response to treatment, which is evidently within the range of expected outcomes at this stage. There was no evidence of new disease or progress on existing disease, just regression, which is good, however, there was evidence of inflammation in the lungs. This could be due to sarcoidosis, which has been suggested as a possible comorbidity in Dave’s case. Alternately, sometimes Rituxan can cause lung inflammation. Either way, there are no symptoms of this inflammation, i.e. Dave doesn’t seem to be having any trouble breathing, so at this point, it’s just something to watch.

I want to review the molecular biopsy of the lymphoma so I can comment more on the level of treatment response to date. We’re working on getting me a copy of that. (NOTE: ask Dr. Patel for a copy of FISH assay results from colonoscopy polyps.)

When we went in for his chemotherapy appointment on March 31st, he admitted to Heidi that he had a slight cough, but he suspected it was reflux-related (i.e. not COVID-19). His main complaint was fatigue, which he says has affected the amount of exercise he’s been getting and had kept him mostly in bed for the three weeks prior. Nausea remains minimal, constipation is still present but manageable, and he isn’t experiencing any pain or numbness. His temperature was ever so slightly elevated at 99.1 F, which is common and not a concern. (It dropped later during the visit.) Heart rate was quite high at 104bpm, and oxygen saturation was 93. Heidi thought it might be related to some mild anemia (hemoglobin was at “10”), however a transfusion is not yet indicated. Also, adriamycin can cause heart damage, requiring the heart to work harder to do the same job. As an aside, my resting pulse went from 64 to 80 after chemo, and only now, 10 years later, is it starting to return to where it has been for most of my life. So if there is heart damage, the good news is that it can heal.

Dave’s blood pressure varied between 112/70 and 139/87 during the visit. Mandible palpation was normal, which from what I can tell is evidence against sarcoidosis.

Next chemo cycle is slated for 4/21. They’ll check his PSA that day. Last chemo will be 5/12. Lupron is also due that day. Six weeks after that, at the end of June, they’ll repeat the PET scan.

I just spoke with Dave on the phone. His least favorite side effect seems to be the mucositis. I can sympathize. When I went through this I easily had grade II mucositis for most of my treatment, which not only affects flavors, but can even become painful as ulcers form in the mouth. Fortunately, Dave is not experiencing pain, but the extreme effect on flavors is reducing his appetite and his willingness to venture out to buy more food. I offered to bring some over, but he said that was unnecessary. It’s more a motivation to eat thing than a fatigue thing. I recommended unsweetened cherry blossom tea. My experience was that the bitterness of it cut through the slime and gave some relief. He said that he’s been experimenting with lemonade since the tartness tends to help a little.

The journey has definitely gotten quite a bit more unpleasant for Dave this cycle.

Just a note to say that I spoke with Dave by phone a few days ago and in spite of his COVID-19 risk factors, he’s doing fine, adhering to social distancing guidelines and for the most part, staying home. I asked him if he needed groceries or anything else and he said “no.” I encouraged him to let me know if did. I still plan to drive him to get his PET scan on 3/26 or 3/27 and to chemo on 3/31, only to adhere to social distancing, I won’t stick around. Instead, I’ll come get him and drive him home when he’s done. I find this choice infinitely preferable to a bus or rideshare. I don’t have any symptoms of sickness either, which of course is not a guarantee, so I’ll attempt to find a mask and put it on before I pick him up, and I’ll make a once-over to disinfect the surfaces in my car.

The purpose of the PET scan is to assess how treatment is working, i.e. to verify that there aren’t any new tumors or tumors that are not responding.

At his appointment with Heidi on 3/9, he said that he had some clear drainage from his eyes and nose, but consensus was that there was no need for concern; it’s not likely related to illness. He also hasn’t noticed any side effects from the androgen deprivation therapy.

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):

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

Dave has asked Tony Evans to be his coach. Dave and Tony have been friends for nearly 40 years. Tony is himself a cancer survivor and has a graduate degree from Johns Hopkins. Tony has agreed to accompany Dave to doctors appointments and will have Dave’s medical power of attorney.

Tony will you please introduce yourself to our blog readers and elaborate on this post, thanks.