Dave’s health blog

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.

I saw Dr. Jeffery Cary, a pulmonologist, on November 24, 2020. Prior to this appointment, I had seen Dr. Cary’s PA, Melody Music, on October 5th for a medical history review. Had a CT scan with contrast of my lungs on November 11, 2020. Immediately prior to the appointment with Dr. Cary, I had a pulmonary function test at his office.

We reviewed the scans and tests. My lungs had cleared since my post chemo scans in July. However, something still showed on the latest scan. Dr. Cary explained to me that because my lung function test was in the generally normal range, that is 91% of expected function with borderline low diffusion, it did not make sense to use any invasive procedures to determine just what we were seeing on the scans. It might be sarcoid or something else, for example, scar tissue.

Dr. Cary asked me to return in six months for another pulmonary function test and to review any new scans. I was cautioned to come in any signs of increased coughs or respiratory infection.

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.

On Tuesday, August 25, 2020 I saw Dr. Aliea Elan Herbert, MD at Swedish Cherry Hill. Dr. Herbert’s medical training and board certification are in Physical Medicine and Rehabilitation or ‘physiatry’. She discussed the rationale for rehabilitation after my treatments for lymphoma.

Specifically she addressed my needs regarding: Impaired functional mobility, balance, gait, and endurance; Neoplastic malignant related fatigue; Physical deconditioning; and Neuropathy due to chemotherapeutic drug therapy.

Dr. Herbert ordered Physical Therapy to work on increased activity tolerance, lower extremity strengthening, postural optimization, core strengthening, and compression fracture prevention. I will have my first PT session on this Friday, August 28th. Next follow up with Dr. Herbert is on September 25, 2020.

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.