Dave’s health blog

Dave and I consulted with Dr. Patel after yesterday’s PET scan and he told us pretty much what we’ve been expecting, i.e. while the lymphoma has definitely regressed, there’s no way to tell from the scan if it’s “gone” because Dave’s sarcoidosis lights up on the scan just like lymphoma would. There are several key indicators that the lymphoma might be gone, like a much smaller spleen, but the answer to the question, “is Dave’s lymphoma in complete remission?” is still a definite “maybe.”

In an effort to get a more satisfying answer, the “Tumor Board” at Swedish is going to meet with Dr. Patel, Dave’s radiologist, and a pathologist, pour over Dave’s before and after scans, and try to select an accessible lymph node for excision and analysis. Their selection process will be guided by a desire to minimize risk (since removing a lymph node is a bigger deal than a simple needle biopsy) as well as a desire to select that lymph node most likely to unambiguously rule out lymphoma. (My guess is they’ll grab a couple while they’re in there. You’ve got thousands of them after all.) Surgery will probably happen around 7/27; the biopsy will probably take another week after that.

Meanwhile, Dave’s oxygen saturation was 97 to 98, which is good, but he’s noticed that he is often short of breath. I thought that this, along with his odd sweating, runny nose, fatigue, and the flare up of eczema on his ankle might be because he finished his prednisone and his adrenals, which regulate inflammation through cortisol, might be temporarily suppressed (as happens with protracted corticosteroid use), but Dr. Patel disagreed. Dave admits he’s put on some weight in the last couple weeks, and Dr. Patel believes that as he continues to challenge his cardiovascular system with increasing activity, that he’ll find his breathing issues will improve.

Dave’s biggest complaint continues to be his neuropathy; I’ve spoken about that at length in prior posts. The nurse who took Dave’s vitals said it might never go away. I personally find that to be very unlikely. Everything I’ve read and experienced indicates it’s almost always temporary, particularly if it doesn’t progress to motor issues, which it hasn’t, and indeed, Dave has already seen some improvement.

Both Dave and Sarah noted that Dave’s hypertension has returned. His reading this morning was 140/100; hers was 157/90. Sarah advised Dave to check with his primary care doctor, Dr. Moen, about restarting his lisinopril. Dr. Patel noted that prednisone can increase blood pressure, but doesn’t give undue weight to that hypothesis in this case given Dave’s history.

The pneumonitis has clearly improved (per PET) and LDH is stable at the top end of the normal range.

Consensus seemed to be that it would be worthwhile making an attempt to treat the sarcoidosis, if for no other reason than to minimize confounding variables at follow-up. Dr. Patel previously recommended a rheumatologist, though any drugs s/he might prescribe would very likely be similar to the ones that were in Dave’s chemotherapy protocol, including Rituxan, a drug to which we assumed he was allergic — though according to Dr. Patel, the pneumonitis we blamed on Rituxan could just as well have been sarcoidosis too. Either way, a consult is probably worthwhile, and perhaps some self-education about environmental factors or dietary issues that could modulate symptoms. I wouldn’t be surprised if there was a relationship between A1C and flare ups, since sugar is well known to be pro-inflammatory.

As for Dave’s weird sweating, Dr. Patel says that chemo affects sweat glands. Some people even stop sweating during cancer treatment. Then when treatment stops they resume sweating, and there can be temporary changes.

Dave’s PSA is undetectable (< 0.1) but Dr. Patel would still like him to check in with Dr. Lily, who has recently moved to Pac-Med.

Dave’s lymph node surgery is tentatively scheduled for July 27th.

I went with Dave to chemo treatment #5 on April 29th, meeting primarily with Heather. While there, Dave admitted he was still short of breath and that he was still coughing up clear-to-white mucous, however he said his appetite had returned, albeit with some slight nausea (hiccoughs), and he was without fevers, bumps, rashes, bruises, or pain, only suffering with some (manageable) constipation. He said he was starting to get pins and needles in his left toes, which is an expected, reversible side effect of the Vincristine.

Vitals were weight 179.3, blood pressure 118/84, oxygen saturation 95, temperature 98.2 F, resting pulse 83 bpm.

Dave said that he continues to need Claritin for five to six days after each RCHOP treatment for tooth pain.

Regarding labs, it was gratifying to note that LDH had dropped. This number, which had been steadily increasing, had entered a zone that might have indicated that the lymphoma was growing more active. Seeing it drop out of the zone of concern is promising, and of course, as mentioned before, LDH has many confounding factors, unrelated to cancer, that can affect it.

Additionally, Dave’s white blood cell count was elevated at 14.7, however that’s a typical side effect of prednisone, and unlikely to indicate anything untoward in this case (like an infection). Hemoglobin also remains low at 11.7, typical of myeloablative (i.e. bone marrow destroying) therapies like RCHOP, and well above the danger zone. Finally, creatinine was elevated, indicating that his kidneys are working pretty hard. Dave confirmed that his urine has been darker than usual. His potassium remains low so Heather gave him a potassium pill and told him to eat some potatoes.

Dave remains on supplemental prednisone, not just because it’s the “P” in RCHOP, but also because they’re using it to treat the pulmonitis he developed as part of his allergic reaction to Rituxan last cycle. While there has been some talk of tapering him down over time after chemotherapy is completed, it has been my personal experience that prolonged corticosteroid use at these doses portends protracted adrenal suppression, which is very unpleasant. I’ll be keeping an eye on Dave after they wean him off to make sure anything like that gets treated immediately.

As stated previously, Dave’s infusion on 4/29 was without Rituxan (so just “CHOP”.)

Dave’s final CHOP session is scheduled for next Wednesday, 5/20. Barring complications, he should then be free to recover at home until his PET scan on 6/22, where we can determine next steps. Unfortunately, he’ll probably have to get another PET after that to assess his prostate cancer. Evidently, the scan protocols are different enough that you can’t consolidate them into one.

Wouldn’t it be a wonderful outcome if Dave’s lymphoma were to remit completely, and his prostate cancer were to regress to such an extent that Dr. Lily looks at it and says, “let’s wait and see”?

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.

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.

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.

Dr. Lily (1/16)

There is much debate on how to approach prostate cancer and many of the guidelines are interpreted broadly.

Lily spoke with the gastroenterologist; still needs input from Patel. Some of the enlarged lymph nodes may be related to prostate metastasis, but most likely they’re all lymphoma, particularly since there are no lymph nodes around the prostate.

90% of pattern in prostate biopsy was Gleason 4, which is aggressive

Perineural invasion (PNI) means there are cancel cells around nerves which confers a higher risk of metastasis. Intraductal cancer is also sign of aggressiveness. Finally the report said that they can’t exclude that some of the cells are Gleason 5. Short answer: Dave’s prostate cancer is aggressive.

PNI is not the same as CNS invasion, so intrathecal chemotherapy is not needed for the prostate cancer. There are no known prostate metastases, but we’re not great at detecting these sorts of things, so we can’t be sure.

Bone scan shows no hot spots, but again, scans aren’t perfect. We could miss something.

They use different agents to scan for prostate metastases than they do when evaluating lymphoma, so Dave might need to do two distinct PET scans to know the states of each disease.

If Dave didn’t have lymphoma, we would definitely at least do radiation and androgen deprivation therapy (ADT) right away.

Lily implied that anything from prostate resection to radical prostatectomy might be warranted, but prefaced with “if you choose to” which is either synonymous with “if you want to live” or “if you want the best outcome.” It wasn’t clear which.

The surgery is robotic and laparoscopic. Side effects include urinary control issues.

Small possibility you could cure the cancer with just surgery, but hard to say. Could do surgery first, watch for a while, then explore other options later if PSA comes back up.

Side effects of ADT: hot flashes, decrease in energy, no sex drive, bone density loss, mood changes.

All treatment options have the side effect of impotence.

Probably makes sense to start on ADT while treating lymphoma, then treat the prostate cancer definitively after lymphoma is in remission, but need input from Patel on that.

Dave says he has some burning during urination but no other signs of infection. This symptom was present before the biopsy, went away for a while after the biopsy, then returned. It is associated with PVCs on his EKG.

Dave says he has no pain; neither in the lower belly nor back nor anywhere else.

Lily says if there’s still a stone, event though CT seems to indicate there isn’t, chemotherapy-induced neutropenia could complicate things, i.e. make an infection more likely.

Consensus is the stone has probably passed; burning sensation is idiopathic. Though the stone could be sitting in ureter, just not blocking (less likely).

Patel may reimage with CT prior to chemo. Can check for stone then.

We can track the prostate cancer during the lymphoma treatment with PSA and DRE to make sure it’s not getting worse.

Surgery is not secondary to radiation and hormone therapy. Better outcomes if you do it first.

Lily has no idea if R-CHOP (lymphoma treatment protocol) will shrink the prostate. Need to ask Patel.

There are options for restoring erectile function, including reconstruction. Can talk about those later if needed. Lack of erectile function does not prohibit orgasm.

Dr. Patel (1/20)

Dave is currently taking Lisinopril and chlorothiodine for hypertension.

The polyp discovered his Dave’s GI tract contained a lymph node positive for diffuse large B-cell lymphoma (DLBCL) which is an aggressive non-Hodgkin’s lymphoma (NHL).

Dr. Patel is going to start Dave with a PET scan. This PET scan includes a low res CT scan (with contrast) that may or may not detect if there is still a kidney stone in his ureter, however the primary reason for the PET scan is to get a closer look at the lymph nodes in his abdomen to see if they are connected to the lymphoma detected in his GI tract or if they are instead idiopathic or arthritis-associated. It’s important to make that determination because it impacts staging and stage impacts the length of the treatment protocol, which can either be four sessions of R-CHOP (which means half the lifetime dose allowed of doxorubicin) or six sessions (3/4 the lifetime dose of doxorubicin).

If the PET scan is indeterminate, Dave will need to undergo a laparoscopic biopsy where they remove a whole lymph node and assay it, looking for evidence of abnormalities. This would be a much more comprehensive biopsy than the needle biopsies he underwent previously. Meanwhile, pathologists are revisiting his past biopsies to see if they can see evidence of abnormal cells that are similar to those found in the polyp removed by the gastroenterologist, but which evaded previous analysis.

The strange thing is that aggressive lymphomas tend to be associated with fevers, night sweats, and pain. Dave is suffering from none of those, which suggests the lymph node discovered in his gut might be unrelated to the systemic lymphadenopathy, i.e. the cancer may be early stage.

The inside of the gut does not highlight well on PET, so we won’t get much more information about what’s going on in there, if anything.

R-CHOP is a combination of Rituxan, a chimeric monoclonal antibody that targets CD20 on the B-cells and marks them for scavenging by the immune system, and four traditional antineoplastic drugs: doxorubicin, vincristine, cyclophosphamide, and prednisone/prednisolone.

It is unknown whether the prostate cancer is sensitive to these drugs, but consensus seems to be that it might be partially sensitive to them, which suggests that the prostate cancer could potentially regress somewhat before treating it definitively, perhaps minimizing side effects and improving outcome.

Commercial CAR T-cell therapy is an option if first and second line treatments fail. Second line seems like it would likely be an autologous stem cell transplant (SCT).

Dave has an appointment to get a “muga,” which will ensure his heart is strong enough to handle doxorubicin, another one to have a single lumen port and catheter installed in his neck, through which they will infuse his chemotherapy over the next 12 to 18 weeks, an appointment for a PET scan, bloodwork, and PET follow up, and finally one for his first R-CHOP infusion. We’re not just in a hurry because the lymphoma is aggressive. We’re also in a hurry because there is a pending labor strike that has the potential to affect coverage.

Dr. Patel agrees with Dr. Lily that starting on ADT immediately to retard progression of the prostate cancer should be just fine.

Dr. Patel says CNS involvement in DBLCL is unlikely. PET scans don’t image the CNS very well, so there’s no way to be sure if the CNS is involved, however given the low probability, we’ll just proceed forward without doing intrathecal chemotherapy.

The PET will show whether or not the lymphoma has spread to the bone marrow, and if it has, may require changing the qualitative elements of the treatment protocol (i.e. adding other drugs).

Rituxan infusions are slow. Because of this R-CHOP will be 5 to 7 hours the first day, and 3.5 hours for each outpatient session thereafter. Those numbers don’t include ADT infusions. The time those take is unknown.

If Dave continues to have pain when urinating, Dr. Lily may order another high res CT with contrast later to evaluate.