I am writing this letter regarding my husband, M----, as a follow-up to a telephone conversation I had with [hospital advocate] yesterday. In that phone call, I expressed concerns about a few issues. I describe them herein for your review.
First, someone at the Cancer Center scheduled M------ for “chemo” every two weeks well before he had his very first appointment with you. This was prior to any consultation about M------ about whether he was actually going to do “chemo” and/or the type of “chemo” he was going to choose. Around the same time, someone called him to tell him that a surgery for his port was scheduled for July 14th, again prior to and without any discussion with M------.
At subsequent consultations with you, M------ clearly expressed a preference for Capecitabine and was very hesitant about a port for Oxalplatin. When we met at his most recent appointment with you on June 22nd, we explained that M------ would be going to Dana Farber and Massachusetts General Hospital on July 6th for consultations. That was the last discussion we had and absolutely no final decisions had been made (obviously, because he had not even seen the Boston doctors yet at that point).
Here is a summary of what was discussed on July 6th:
Dana Farber (Dr. Cleary, Onc.; Dr. Wang, Surgeon)
1.) Adding Oxi- to Xeloda or 5-FU supposedly doubles efficacy.
2.) Doctors suspect that the large adenoma in transverse colon (mass #2 found June 28) that came back with no cancer in biopsy (took 1 cm in aggregate) is actually malignant.
3.) Based on #2, doctors want husband's entire colon removed.
4.) Doctors looked at the scans and are certain that there is indeed a small cancerous spot on the right lobe of the liver.
5.) Doctors say husband needs liver resection. Without citing hard data but appearing very confident, the doctors said that surgery is the way to go and strongly recommended it over RFA. This is based on "certainty of getting it all" thinking, to paraphrase.
6.) However, before any treatment begins, Onc wants husband to a) have a third/repeat colonoscopy to do another biopsy on the giant polyp/suspected tumor and b) have further genetic testing done both on his specimens and by blood draw.
7.) IF the polyp is removable during this colonoscopy, they will do so. We encouraged them to go this route, or at least try, because husband is loathe to lose any more of his colon.
8.) Onc says that genetics could influence a) the type of surgery done and b) whether or not he will recommend adding Panitumumab to the Xelox or Folfox. (I wasn't sure if he was referring to his MSS status or something else. Our local doctors did not send over all the records. I didn't get a chance to ask because Onc seemed in rush to finish up the appointment.)
9.) We asked about what our local doctor might have meant by Oxi- being hard on the veins. Apparently, if given through IV infusions, burns on the arms can develop, sometimes so much so as to require plastic surgery. (This was tough news for husband who really, really, really wants to avoid a port. He has since come to accept that a port is necessary.)
10.) Onc recommends doing six cycles of chemo, then have liver and/or colon resections, and then do 6 more cycles of chemo.
11.) Onc says husband needs to start chemo ASAP.
Mass General Dr. Zhu, Onc.
1.) Adding Oxi- to Xeloda or 5-FU is the way to go for Stage IV CC, even with husband's comorbidities. He said there is plenty of data to support this and I believe him.
2.) Zhu agrees that further genetic testing and a repeat colonoscopy/biopsy is needed.
3.) Zhu says that the liver mass(es) can be "easily addressed" with RFA or other ablative techniques. This was confirmed with the liver surgeon, Dr. Qudan.
4.) The radiology department is going to review the scans again per his instruction.
5.) Even though this is "difficult case", he is very positive and optimistic about husband's chances of beating this and moving on with his life.
6.) Zhu will be sharing the case with his team today and giving it extra attention.
7.) He does not think that husband necessarily needs chemo ASAP. His treatment recommendation is to take care of the resection(s) first and then start chemo.
8.) #7 seems to make sense because the logic is that the chemo will affect the liver in ways that there is more guesswork.
On July 13th, someone from the Cancer Center called M------ to remind him of his July 14th appointment. For what procedure this was to be, we are not certain, but on July 13th, he was undergoing his 3rd colonoscopy for the additional complex polyp/tumor at Brigham & Women’s Hospital that day (the 13th) and had no plans to have any procedure at SVMC on the 14th.
On July 18th, Allen (or Ellen?) at the Cancer Center called M------ to tell him he had chemo that day (the 18th). M------ has yet to have a Cancer Center appointment that involves a discussion of his availability. In fact, I expressed what his availability was in a previous fax for one of his appointments and that was ignored. M------ explained to Allen what the next steps are for the immediate future: genetic testing at Dana Farber on July 20th, colon surgery, then chemotherapy. What he described was his treatment decision based on Dr. Zhu’s recommendation of surgery first, then chemo.
Speaking of chemo, I noticed that his appointments had been scheduled for every other week. However, the NCCN 2017 Guidelines state:
Oxalplatin 130 mg/m2 IV day 1
Capecitabine 1000+- mg/m2 twice daily PO for 14 days (NB: lower dosage may be necessary due to toxicity)
Repeat every 3 weeks
Also, at our June 22nd appointment, you had said that the Oxiplatin infusion would be every two weeks. This does not seem to comport with the NCCN.
M------ has essentially not been properly consulted by the Cancer Center regarding his treatment plans or his schedule. This is a synopsis:
1. July 20th : genetic testing
2. End of July/early August: colon and liver surgery
3. At some point post-surgery: port installation
4. After healing: begin chemo (CAPEOX, perhaps with an add-on based on genetic testing results)
Lastly, Dr. Aihara, the endoscopist at Brigham and Women’s, noticed that the site of M------’s anastomosis was inflamed, indicating that he was not healed at the eight (8) week point after his May 19th hemi-colectomy. Dr. Aihara informed us that healing can take 3-4 months. This causes a concern for timing the start of chemotherapy.
While [hospital advocate] offered us the opportunity to have an appointment with you to discuss, M------ does not have the time for that. This letter hopefully puts things on track.
Wife 4/17 Dx age 45
5/17 - Lap left
5 x 4 x 1 cm
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
Lynch no; KRAS wild
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 met in liver
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death