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Medical

Answers & Good News

Dave’s CT results came back yesterday afternoon. The pneumonitis, i.e. lung inflammation that showed up on his PET last month is still present. Dr. Patel’s hypothesis is that this is a reaction to Rituxan, the “R” in RCHOP, so he’s decided to remove it from Dave’s protocol. I personally think this is just fine. Dave has already had four cycles of Rituxan, CHOP (sans R) was the standard of care up until very recently, and I only got two cycles of Rituxan myself, even though I had a more aggressive lymphoma, and I’m still here. It’s an elegant drug, but it does have its drawbacks.

Dave believes that his hoarseness might be related to the pneumonitis. I think his fatigue is a better indicator, however I recall I also had some hoarseness when I went through therapy; at the time I ascribed it to cell destruction around the voicebox and fatigue. However in retrospect, I may have had undiagnosed pneumonitis myself, or it may have been a combination of that and cell destruction around the voicebox. Pneuomonitis is a risk factor for pneumonia, and when immunity is low, for opportunistic pneuomnias like pneumocystis, a disease usually reserved for people with AIDS. Interestingly, I had pneumonia (not pneumocystis) during my chemotherapy regimen, which I think they treated with Avelox and one other drug, since it was only partially responsive to the Avelox. They also had me on sulfamethasone as a pneumocystis prophylaxis, and not surprisingly, Dr. Patel has also prescribed that for Dave. (They also prescribed additional prednisone to treat the pneumonitis.)

I think the point is that complications during chemotherapy are common, and there’s plenty of wiggle room in the protocol and with supporting therapies to contend with this kind of adversity. That’s why it’s important to have good healthcare practitioners who can make decisions on the fly. The protocols are not one size fits all.

Given this new information, it’s a good thing we elected not to load Dave up with another dose of Rituxan yesterday. Instead, now he has an additional week to recover from the pneumonitis as well as time to improve his nutrition status. And given the above, I think that general strength and relative hoarseness are probably good surrogates for his capacity to endure chemotherapy next week (4/29). Dave also said the he started to produce clear-to-white phlegm shortly after beginning chemotherapy. It would be interesting to see if that dropped off over the next week as well.

I was kind of hoping to keep Rituxan in reserve in case Dave doesn’t see a complete response by the time he’s finished six cycles of RCHOP. Sometimes you can use Rituxan as intermittent maintenance therapy to keep a refractory (i.e. stubborn) cancer at bay for years. Though who knows? If that happens, it may turn out that the risk profile of continuing to use Rituxan alone is reasonable, so long as Dave’s general health is good and he takes steroids with it. (And of course, he may have a complete response, which would make the concern moot.)

Dave’s PSA came back as 0.2, which is at the very low end of the normal range. This is an indicator that his prostate carcinoma has stopped growing, probably as a result of the Lupron he started three weeks ago. It’s also possible that the CHOP part of his protocol has caused some regression. We won’t know until we do some imaging studies at the end of his lymphoma treatment, but it’s still a nice piece of news.

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Medical

Delaying Cycle Five

Dave asked me to help him pick up some groceries last week. He looked like hell and admitted to not eating anything in two days because he couldn’t overcome his dissmell, and also because of just general fatigue. When I picked him up for chemo this morning, he seemed marginally better, and said he’d eaten a little.

After his blood draw, we proceeded to Dr. Patel’s office where we were greeted by Wendy, who took vitals. Then Heather Holdread, ARNP dropped by to interview us. Finally, Heidi, who had been occupied with a telemedicine appointment, was able to check in on us as well. We also had a brief interaction with Katelyn at the end, who disconnected Dave’s port after he got a half liter of IV fluids.

Upon arrival, Dave’s temperature was subnormal at 96.2 F. He said he took it this morning and it was similarly low. His blood pressure looked good at 138/72, but oxygen saturation was low at 91-94, and his heart beat was fast (111bpm) and irregular. His weight, 186#, was down 10# from his last visit (3/31). Dave took the opportunity to check his EKG via his Dick Tracy talking watch and it was inconclusive. Concerned about his oxygen saturation, Heidi decided to take him for a lap around the ward whilest holding on to his belt loop. My thought is that the fear of getting a wedgie helps keep people from falling. Anyhoo, he seemed to shuffle his way around without too much variance in pulse oximetry.

LDH, a marker for tumor metastasis was slightly elevated, however this is inconclusive. It could also mean he has a little bug, or any of a number of other confounding possibilities.

I suggested Dave drink an Ensure, but he didn’t think he could get one down, so we settled for an apple juice. Later, I got him to eat part of a Subway sandwich. The combination of both seemed to increase his energy a little bit.

Dave said he’s been more or less lying in bed for three weeks, mostly because of fatigue, but also because the COVID-19 pandemic is constantly pressuring him to stay indoors. He promised that he would make a point to get out daily for at least 10 minutes of activity going forward.

Heather and Heidi asked Dave if he was depressed. He thought for a bit about the question and in Dave-fashion, offered “annoyed” as an alternative explanation. That’s when I said that in the ~40 years I’ve known Dave that he’s never been prone to depression, but he has had anxiety issues from time to time. I reminded Dave that depression doesn’t necessarily mean that you want to slit your wrists and jump off a building. It just means your nervous system is less active. Cancer, chemotherapy, and the ongoing pandemic are all traumatic in their own ways, and it wouldn’t be unusual to experience some psychiatric effects from this. Dave did admit to some frustration with the lack of “tactile” evidence that his illness is receding, and talked about how lukewarm it was to hear of a “partial response” on 3/31 but said he didn’t think he needed to see a shrink (which was offered). He said he’d be open to it if conditions warranted it later.

Heather and Heidi repeatedly asked Dave if his lethargy might be due to shortness of breath. He admitted his stamina was down. While it’s clear that loss of stamina and trouble breathing are not the same thing, after consultation with Dr. Patel, Heidi ordered a CT to check on the state of Dave’s lungs, which showed inflammation on his last PET. (As an aside, Heather listened to him breathe and reported his lungs were clear.) The decision was made to delay his chemotherapy until we can confirm he doesn’t have a bug.

One thing I recall from when I went through chemo is that you can get sick and have no symptoms besides reduced energy levels because your immune system isn’t strong enough to mount a response. So I agree that it’s a good time to take extra precautions. I also think Dave should take the time to actively improve his nutrition status so he can be strong enough for another round.

I was able to get a print out of the result of Dave’s polyp biopsy, specifically the FISH assay, which looks for molecular rearrangements in the chromosomes. I thought perhaps that it might show evidence of something especially resistant to chemotherapy and that might explain why Dave has only had a partial response so far. Alas, there was nothing unusual. So I did a little reading: something like 80% of folks have a complete response as assayed via PET after four cycles, however those that don’t have similar outcomes assuming they complete another two cycles. This may be related to false positives on PET, or rather PET is highlighting something other than cancer. Recall that Dave’s first diagnosis around his lymph nodes was sarcoidosis. It could be that is just a comorbidity in his case and it’s confounding the typical means used to assess response. It’s probably also why his needle biopsies came back negative, i.e. cancer only explains part of Dave’s lymphadenopathy.

I actually find this hopeful, but I am still concerned about his fatigue and nutrition status. I still feel like his energy level needs to be higher so we can have a comfortable safety margin for his next round of chemo — which we’ll schedule in a couple of days, after Dr. Patel has a chance to review today’s chest CT.

Today’s labs included PSA, but the result was still pending by the time we finished our visit.

Categories
General News Medical

Partial Response

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.