Month: August 2020

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.