Author: Anthony Evans

Dave and I went to see his cardiologist, Paul Huang, on March 1st. On intake, the nurse took Dave’s blood pressure from both arms. The results were 140/75 on left arm and 130/80 on right arm, with some evidence of an irregular beat. Dave reported to Dr. Huang that his PVCs have stopped and said that while the 12-lead EKG did indeed show irregularities when he got his seed implants on 1/28, the report was still better than the one from the 12-lead EKG he got a year ago.

Dr. Huang said that Dave’s irregular EKG was likely because of asymmetric thickening in his heart muscle, with some parts of the heart muscle not working as well, i.e. non-uniform contraction. He said the most likely explanation for the thickening is hypertension. It’s also possible that there are some blockages in the cardiac arteries.

Dr. Huang ordered a nuclear stress test to test the blockage hypothesis. The test involves injecting a radioisotope and doing real time analysis of blood flow while Dave is exerting himself on a treadmill. This is then compared with blood flow while sedentary. Dr. Huang also wanted a lipid panel, so that was added to Dave’s next set of labs, scheduled for 4/16.

Sleep apnea could also explain some of the abnormalities. Dave had a sleep study recently, which detected some evidence of sleep apnea, but final results are not available yet.

In any case, Dr. Huang cleared Dave for strenuous exercise, including uphill/aerobic walking. He just said to be mindful of breathing and sensations in the chest, and to stop and take a break if it gets too uncomfortable.

Fast forward to Saturday, 3/13: Dave ended up going to the ER with a urinary obstruction, which his past reading had indicated might be a potential complication of the seed implants. After they explanted some blood clots, he was sent home with a catheter. He doesn’t yet know if it will interfere with his radiation treatments, which are scheduled to begin later this week. Either way, it is certainly uncomfortable.

Drs. Eulau and Lily will be collaborating to implant the radioactive “seeds” in Dave’s prostate on 1/28. Dave will also be starting on the drug Flomax on 1/26 to counter the expected prostate enlargement from radiation treatment.

We saw Dr. Patel and Heidi on 12/14. LDH and body weight continue to drop as expected, and Dave remains mildly anemic, but everything else is stable.

Dave got his port out on 12/16. There is evidently no need for regular blood draws during radiation treatments, and medication to ameliorate side effects (e.g. Zofran for nausea) can be given orally, if needed.

Androgen deprivation therapy (Lupron) will continue at monthly intervals through April, so as to overlap radiation treatment. Next dose is due 12/30.

Dave and I met with Dr. Eulau, a radio oncologist at Swedish, and his PA, Lisa on 12/1/20. During check in, Dave noted that he’s been walking 3 to 4.5 miles/day, 75 minutes of which is uphill. His blood pressure was 94/61; heart rate 88bpm. Still on 20mg of lisinopril daily. No longer on hydrochlorothiazide. No urinary symptoms or urgency. Weight loss continues as expected.

Dr. Eulau agreed that any theoretical effect that RCHOP might have had on Dave’s prostate carcinoma is functionally irrelevant from the perspective of choosing his treatment going forward, and suggested that we treat aggressively without delay, however the way he described the options made radiation sound a lot easier to deal with over staying on Lupron long term. When Dave said that his urinary issues went away after beginning RCHOP, but before starting on Lupron, Dr. Eulau suggested that there are many reasons this could be, including resolution of a transient infection related to the kidney stone Dave had.

Dr. Eulau said that the typical approach is “seeds, beam, and ADT.” The seeds are the size of a grain of rice and made of a radioactive isotope of paladium, paladium 103. These are implanted transrectally, after which they proceed to shrink the tumors over the course of several months until they seeds become inert. (The seeds are never removed.) After about seven weeks of this, we augment with beam therapy, which starts by mapping the prostate with ultrasound, and making some freckle-sized tattoos for targeting. After this mapping is complete, Dave will report for 10 minutes of radiation per day over the course of several weeks. This process “dries out” the tissue in the gland. There will be no need to follow beam radiation with ADT in Dave’s case since he has already been on that for several months. This approach has an 80% cure rate. Overall, I feel really good about this approach, and my read of Dave is that he does too.

Dave is getting initial mapping done on 12/8 so we can figure out where to implant the seeds.

Dave and I went to see Dr. Patel on 10/19 and Dr. Lily on 11/24. The appointment with Dr. Patel was fairly unremarkable. Most of Dave’s vitals were stable, with the exception of his weight, which was down to 192#; Dave attributes that to the greater attention he’s been paying to both his diet and his exercise program. He was also mildly anemic, but not alarmingly so, and as is typical with him, probably because of his blood pressure meds, his potassium was low. Dr. Patel suggested that it might be time for Dave to talk to his primary doctor (Moen?) about reducing his blood pressure meds, dosage for which is calibrated to weight.

The main thing we talked about was Dave’s intake with his pulmonologist’s nurse. He’s scheduled to see Dr. Jeff Carey on 11/24 for a chest CT and pulmonary function test, primarily to assess his sarcoidosis.

Dave switched back to Lupron to treat his prostate, but because only the smaller dosage is available right now, they’ve had to up the frequency. I believe he got it on 8/17, then again around 11/3, but I believe the next dose is due early in December.

We also spoke about the port, which barring a need to keep it for prostate treatment, Dave is willing to remove once his visits to the hospital drop to every eight weeks.

“Ather” (sounds like “Arthur”), Dr. Lily’s PA, checked us in on 11/10. Dave’s vitals, including his weight, were stable that day, though he claimed to have greater energy, which he ascribes to four miles of walking per day. Libido was still flat, as expected.

Dr. Lily gave Dave a DRE and found no evidence of disease. He was, however, skeptical of the proposition that RCHOP could have cured the prostate cancer, instead crediting Lupron with shrinking Dave’s prostate. (Dave later confirmed that his prostate symptoms abated after he started RCHOP but before he started on Lupron.) We asked if more scans or a biopsy would help confirm the state of the disease. Lily’s answer was basically “no.”

I had a similar discussion with my oncologist in 2010 when after three CHOP cycles, my cancer was undetectable. He even used the word “remission.” Nonetheless, I still needed another five months of chemo in the hospital to ensure the destruction of every last cancer cell. Once you’ve detected cancer in an advanced stage, you must treat it with the exact right protocol, even if it becomes undetectable before you’re done, because if you don’t, and it comes back, it will often be resistant to earlier measures, and then treatment becomes far more difficult. RCHOP is not designed for solid tumors. No matter Dave’s subjective sense of the symptoms, no matter the negative DRE, no matter even a negative scan or biopsy, you can be certain the cancer is still there, and probably has clones spread throughout the area that originally lit up on the PET… which means, no matter the state of the cancer today, if Lily was to do surgery, he would remove the same wide margin of tissue he would have removed when the cancer was obvious.

Asked what he recommends, Dr. Lily was a bit evasive. He said he would need to speak with Dr. Patel first and figure out Dave’s long term prognosis. Lily’s opinion was that if Dave isn’t expected to live more than another 13 to 15 years, that aggressive monitoring and Lupron might be sufficient to keep the cancer in check, but that if Dave expected to live longer than that, the cancer would eventually become refractory, metastatic, and terminal.

Dave told Lily that he is committed to living another 30 or 40 years. In that case, Lily recommended aggressive treatment, but seemed to pull back from surgery as an option. People with high risk disease will often instead do hormone therapy followed by radiation therapy, then maybe drop the hormone therapy after 1.5 to two years and monitor. (Once you’ve had radiation, you can’t do surgery. Sometimes radiation can follow surgery, but that appears to be salvage therapy.)

One option that was discussed is oscillating on and off of hormone therapy to avoid bone loss, though there are treatments for bone loss that might enable Dave to stay on Lupron continuously.

Dave and I both kind of got the idea that Lily wasn’t really comfortable with Dave’s comorbidities. While I’m sure he’d be willing to do the surgery if Dave asked, it seems like he’d rather not.

There are immunotherapeutics out there for prostate cancer, but they’re still in trials, and Dave’s comorbidities disqualify him from those. However, if we were to presume that highly effective immunotherapeutics might be made available before Dave’s prostate cancer metastasizes, it could be that he could just stay on Lupron for 10 years or so, then get the fancier treatment when it shows up. It is a gamble though. The surest way to cure the prostate cancer at this point is very likely radiation and two years of Lupron, with all its corresponding long term side effects.

Dr. Lily referred Dave to Dr. Eulau (“You-Low”), a radiation oncologist. Dave made an appointment to see him on 12/1.

Dave and I went to see Dr. Patel on 8/17 where Dave reported he’s been getting between one and three miles of walking in each day, in intervals that are a substantial fraction of a mile. He’s also noticed that his breathing and neuropathy have gotten better, with no problems climbing several flights of stairs at a time. Weight stable, but high; PSA up to 0.1, LDH down to 186, WBC 3, Hg 12.5, fasting glucose 113, blood pressure 118/74, 96% oxygen saturation — nothing unexpected. Dave reported that he’d had a perfect sinus rhythm for two solid weeks as well. Resting pulse was high at 105, and there was a low grade fever. I didn’t write down the number, but he felt fine.

ClonoSEQ results came in the next day and were negative, which means there is no sign of nucleic acids related to the DLBCL in his blood. Dr. Patel said it made sense to treat this result the same as he would treat a clearly negative PET, i.e. follow up every two months in the first year, every four months in the second, and every six months in the third. After that, relapse probability drops precipitously. Recurrence of the same cancer after five years occurs in less than 5% of cases.

Dr. Patel referred Dave to a pulmonologist, recommending that he ask him or her to verify that he has sarcoidosis. He also referred him to a physiologist to help him deal with his neuropathy and to address any mobility issues he might have arising out of his treatment.

While Dave does not need to get re-immunized for anything, Dr. Patel suggested that he get the flu vaccine in September or October, then repeat it in December, since Rituximab might have reduced his response to vaccines, at least in the short term.

Dr. Patel also suggested that Dave may want to remove his port six months post-chemo if there are no indications that anything is wrong. Dave wasn’t too keen on that suggestion. He doesn’t find the port to be that much trouble and he really appreciates how simple it makes follow ups.

Dave was due for Lupron on Monday, but there’s a shortage, so they gave him Eligard (22.5mg, subcutaneous) instead. The purpose of this alternative drug was the same, to keep his prostate cancer in check. I continue to encourage Dave to see Dr. Lily (or another urologist) as soon as practical so he can get a better assessment than just PSA (e.g. DRE). It would be nice to have at least two lines of evidence suggesting that cancer is under control. Additionally, a urologist might have other advice.

Finally, Dave reported to me that he reacted to the Eligard with vomiting and shakiness. In fact, he said that it was so bad that he almost called 911. He reported this to Heidi the next day who said she suspects the Lupron shortage may be long term, but that it may be possible to control these side effects with antiemetics. As I write this, I actually find myself wondering if this might have been related to Dave’s low grade fever instead of the drug. I’m encouraged by the negative ClonoSEQ. It may be he just had a bug and that potentiated his response to the drug. Either way, it makes sense to take precautions when he’s due again in a few months.

Dave’s next appointment with Dr. Patel is 10/19.

Dave and I visited Dr. Patel and Heidi last Monday where Dave reported that his energy level and breathing had deteriorated, that he has a “rattle in his throat,” and that he developed a chronic wheeze starting 10 days prior. Practically, running quickly up a single flight of stairs or carrying two bags of groceries four blocks are sufficient to create difficulty. Nothing was evident upon inspection with a stethoscope. Pulse oximetry was 95, and didn’t drop after making a lap around the ward. Blood pressure was okay at 138/82, but resting heart rate was pretty high at 95, and 119 after the lap. Weight was up at 202#. Transient anemia was resolved. I thought maybe adrenal insufficiency might be responsible, and noted that Dave’s eosinophils had been creeping up for months, which might indicate allergies, but Dr. Patel disagreed and said Dave’s runny nose is probably responsible for the rattle and that he needs to challenge his cardiovascular system more to recover lost capacity. If his condition deteriorates in spite of that, it might worth doing a CT and potentially an Rx for corticosteroids.

Dave reported that he isn’t currently taking any medications. LDH dropped considerably, down to 202, which is promising.

The tumor board met two weeks prior to our visit to discuss Dave’s case and concluded that excising a lymph node for biopsy would likely be unrevealing; there just weren’t any good candidates for disambiguating his sarcoidosis from prospective lymphoma. Instead, Dr. Patel suggested regular monitoring using a recently developed quantitative liquid biopsy, called clonoSEQ™, that amplifies nucleic sequences in the blood matching malignant sequences present in the polyp removed during his colonoscopy. That is, using this new blood test, we can know three or four months sooner whether he’s had a relapse than we could with a PET, even if sarcoidosis wasn’t confounding those scans. The first test is $3K and $1500/each thereafter. Unfortunately, insurance doesn’t cover it, however Dave may be eligible for assistance from Adaptive Biotechnologies, the company that makes the test, both because his insurance doesn’t cover it and because Adaptive wants to use the data to lobby Medicare and other companies to cover it in the future.

If the first clonoSEQ comes back negative, it might be worthwhile doing another colonoscopy to look for another malignant polyp. Alternately, we might just take that to the bank and do another test in a year. We’ll discuss it at the time. If it ever comes back positive, we’ll repeat it in six weeks to confirm, and to see if its stable or getting worse; potentially triggering a PET. We’ll still do other blood work every two months for a year, like LDH, CBC, and chemistry, errant readings in any of which could trigger an ad hoc clonoSEQ test. Assuming no relapses, after the first year, bloodwork drops to every four months; every six months the year after that.

Dave’s next appointment with Dr. Patel is in two weeks to review the clonoSEQ results. Assuming clonoSEQ remains negative, he can take his port out in six months.

We still need to consult with Dr. Lily about the state of the prostate cancer.

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.