THE TEAM
Dr. Peter Rintels and Chris Clements
10/05/00 at George Clinic at the Rhode Island Hospital
Sunday, SEPT 23, 2001
BACK HOME FOR A WHILE.
Chris was discharged from NEMC Sunday. He will start the two weeks of radiation treatment some time next week as outpatient at RI Hospital, then return to NEMC for the stem cell infusion (BMT). He is still on some intravenouis antibiotics that he can get at home.
Friday, SEPT, 21, 2001
Things getting back on schedule.
This past week, Chris had a drainage tube installed in his chest to drain the fluid around his left lung. He also had a bronchoscope done. The Doctors say that 10 liters of fluid drained out. This seems too high to me , I calculated that volume as being about 23 pounds. Whatever the actual volume was, draining it had an immediate effect. Chris can breath much better now and has been getting out of bed and doing physical therapy. The doctors want him to get in better physical shape before proceeding with the 2 weeks of radiation treatment followed by the infusion of his stem cells. They also did another LP (lumbar puncture) this week and injected more chemo into his central nervous system. The sample of fluid they took from his spine did unfortunately reveal that he still has leukemic blast cells in there. The spinal chemo and radiation is expected to wipe that out. His blood system still appears to be clean of blasts though, so the harvested stem cells are still considered to be good for the transplant. He is feeling much better now and should be able to come home next week and do the two weeks of radiation at Rhode Island Hospital as an outpatient.
Friday, SEPT, 14, 2001
Completed the harvest today.
Chris completed his harvest today. He had a Vascath (Vascular Catheter) installed in his groin Monday for the harvest. Harvested 30% Tuesday, another 50% Wednesday and another 30% Friday. Had to get platelets before the catheter and each harvest. The catheter was removed today. Chris is not doing that well right now. He has had bad pneumonia since the previous week and requires continual oxygen. X-rays and c-scan show that he has over a gallon of fluid in one lung and unidentified infiltrates in the other. Having the catheter installed in his groin has prevented him from moving and probably worsened the pneumonia.
Sunday, SEPT, 9, 2001
Transferred to NEMC (NEW ENGLAND MEDICAL CENTER).
Chris was transferred to NEMC in Boston by ambulance today. The plan is to do his stem cell-harvest as outpatient. DEB and I were able to get a room at the Neely House, which are cancer patient family apartments right in the hospital - (similar to the Ronald McDonald houses). These are provided by the Cam Nelly (Boston Bruins star center) Foundation for a very low nominal fee.
Sunday, SEPT, 2, 2001
Still at Rhode Island Hospital
Chris's temps have still not stabilized. Peak temp was 103.9. He has had numerous C-scans and x-rays to try and determine the source of the pain behind his eye and the temps. He has developed a bad pneumonia and they would like to take a biopsy of the fluid in his lung or do a bronchoscope but his platelet count is too low. There is talk about transferring him to New England Medical center to do the harvest as in-patient.
Wed, Aug, 29, 2001
Back in the Hospital.
Chris went for his clinic visit Monday (Aug 27) and they admitted him because of a high temp and to check out why he's been getting a bad pain in one eye.
Finally started getting control of the temp today, was up to 103 yesterday, staying near 99 now. Maybe he can go home tomorrow.
Had C-scan and MRI for eye problem. Big dispute going on between the Eye Doctors and the Oncologist over the cause/treatment. Eye Drs want to do intrathecal chemo but our Onc doesn't think that it's needed or safe with Chris's counts.
The neupogen hasn't been working to good at recovering White Blood counts. They've been down at 0.1 for a week now, Neuts are starting to show up though. They just doubled his daily dosage of Neupogen to see if they can get them going. If they don't start accelerating, the harvest scheduled for next week may be delayed.
Sunday, Aug, 19, 2001
Seems like more than a month since the last update. Lot of things going on.
Chris is on a set schedule for an auto-transplant now. He will get a VasCath installed Sept 4th, do a peripheral stem-cell harvest on Sept 6th, and 7th and then go for transplant on Sept 20.
Chris did his last round of Chemo (high dose Ara-C) last week (Aug 13-15). It was a fairly rough round, worst then we expected since Chris handled the Ara-C so well the last time he got it. Probably because he hadn't fully recovered from the Mylotarg yet. He stayed in the hospital one extra day and came home Friday but was too beat to sail with us in the Leukemia Cup Regatta Saturday.
Debi and I did the Regatta Saturday by ourselves, We were hoping to have Chris and some of his fellow patients along, but weren't even sure that we'd make it so we didn't make any crew plans. We actually beat a boat in both races which was surprising considering the Eco-system INFINITY had growing on her bottom. I did manage to get out the week before and at least scrape most of the mussels off her keel. We ended up being third place fundraiser this year, which also was surprising since we only raised $7,500 this year. The good news is that the 1st and 2d place boats did really well. UNPLUGGED who was second behind INFINITY the last two years took first place with something over $17,000.00 WAY TO GO SCOTT!!. 2d place went to TIRAMASU with something over $14,000.00. I think the next highest fundraising boat was WEST OF THE MOON with around $4,000 and there was either one or two other boats around $1,000.
The two weeks before Chris's latest chemo were filled with tests and appointments in preparation for the transplant. He had another BMB (Bone Marrow Biopsy) done on Aug 6th. The initial lower level results from that came back negative but we got the higher level PCR results back last week and it still came back positive. We were hoping the Mylotarg would have knocked it down to a negative result but it didn't. The other bad news that was even more of a shock was that the result of a LP (Lumbar Puncture) taken last Tuesday came back positive. The number of blast cells was at least low and nothing like the CNS relapse back in January. He had Intrathecal Chemo (injected into his spine) Thursday. They don't normally like to do this while your getting regular chemo but we have to try and knock out the CNS Leukemia before going for the harvest and transplant. Despite the second successive PCR positive results and the CNS relapse, we are still proceeding on schedule for the auto transplant. Chris starts his Nupogen shots Monday and will get two shots daily right up to the harvest. Nupogen or (G-CSF) is used to stimulate white cell production and is used to increase the level of stem-cells in the blood stream so that they can be harvested through pheresis. The other thing that it can do however is increase the level of Leukemic blast cells if you aren't in a high level of remission. The Drs still think that this is still the best way to go rather than a traditional marrow harvest because the recovery rate is suppose to be much better with peripheral stem cells.
Thursday, July, 19, 2001
Chris has done his two rounds of Mylotarg (July 1 & July 16) No severe reactions, only the anticipated chills and high temps. 1st round was in the hospital for partial day admittance and second round was outpatient at the clinic.
Went to NEMC on July 9, NEMC not that concerned about PCR positive results. Recommended finishing Mylotarg, then one more round of chemo (ARA-C only?) then stem-cell pheresis harvest once his counts are up followed by an auto transplant. NEMIC does not recommend doing the allo transplant unless Chris goes into full relapse - too risky. I'm concerned that Chris will not stay at his present level of remission - last time he went PCR positive it was followed by a full (and very bad) relapse within weeks. If that happens, our only choice will be the partial match allo. I also have concerns that the auto is only to buy more time and I'm afraid that the only possible partial match may go away. On the other hand the added time may turn up a better match donor - though highly unlikely. Newport's Leukemia cup regatta coming up in about a month, Debi's bummed out that we haven't raised much yet (about $5000). I'm amazed she has done that well considering how little time she has had to fund-raise with all of Chris's treatments.
Tuesday, July, 03, 2001
Quick Update - ANOTHER SET BACK:
Friday June 29, 2001: We were notified that the last PCR marrow test that was taking since the last consolidation round came back positive. This was a complete shock since Chris was PCR negative after achieving remission with Ara-C and Etopocide. The consolidation round with the same drugs should have just improved things. somehow in that short time it seems that the Leukemia has built up resistance to those drugs.
Sunday July 1, 2001: Chris was admitted into the hospital for one day to receive MYLOTARG. The mylotarg is to be administered twice, 14 days apart. He has also started up on ATRA again. The hope is to get him back into molecular remission or at least to prevent full relapse and go to a transplant. There seems to be some confusion now as to the acceptability of the one candidate 5/6 match that we had been told was acceptable. I tried to get that resolved today but never got the call back from NEMC.
Chris is scheduled to go back to the RI clinic Friday to check his counts and receive intrathecal(spinal) Chemo and to go to NEMC Monday to discuss options. Hopefully by then we will have a better idea of where we stand. There are other complications going on now that are making things more difficult than they should be, but I won't go into them now.
Saturday, June, 02, 2001
Quick Update - A LONG OVERDUE UPDATE:
Sorry for taking so long to update this, a lot has happened and mostly good.
(1) Chris did achieve PCR negative ! All of his counts came way up to normal, (actually higher than what has been normal for Chris in years). Chris also rebounded back to his normal self with no lingering effects of all the pain meds.
(2) Rather than go straight to an auto-harvest , the Doc recommended doing at least one round of consolidation chemo first. I still think we should have done a harvest first, but the Docs felt that there was no danger in Chris's counts not recovering and the consolidation gives the harvested marrow a better chance of being free of leukemia. Chris spent only four days in the hospital getting Ara-C and Etopicide on May 10 through May 13. Biggest problem with this round was that Chris was continually going AWOL from the floor and I'd have to go find him for the nurses to get his treatments. His counts are just now starting to climb back after bottoming out last week. Only complication started last week. Chris got some sort of a boil under his arm that had to be lanced and a subsequent biopsy came back revealing a pretty bad infection from it. He had been getting a ton of anti-biotics already and they just started him on IV Vanco-miacine (sp), but he is getting it at home. With that and the fact that his own immune system should be picking up, it shouldn't be a problem.
(3) We did get one full 5/6 match for transplant out of the original 25 candidates after all. We also changed over to NEMC for the search and any upcoming transplant. We now also have two possible 6/6 matches and a few more untested 5/6 matches to check . I'm assuming that these are a result of NEMC testing the 17 original 4/4 matches. Will confirm all this next week at scheduled visit to NEMC. We are still uncertain of transplant plans, other than the fact that we will be doing an auto-harvest as soon as Chris's counts come back. Whether Chris goes for an auto or an allo using the matched 5/6 or if the allo would be a full or mini transplant are questions we hope to get resolved next week at NEMC. I suspect that if either of the two candidate 6/6 ended up being molecular 6/6s that Chris will do the allo, but if all we have is a 5/6 then it may be a tough decision.
While all this was going on, we almost lost our three-year-old grandson, Adrian, from some nasty stuff called Kawaski Disease . He's okay now, except he is getting physical therapy. He had trouble walking when he finally came home. Not sure that was from the disease , or the treatments, but he's coming along fine now. He spent almost 3 weeks in the hospital, most of it in PIC and was on a respirator for over a week, but made a miraculous recovery that amazed all the teams of physicians that were treating him. Guess miraculous recovers run in the family. He was in the HASBO Children's hospital attached to the Rhode Island Hospital that Chris was getting his Chemo at. Chris was upset that he was giving strict orders to stay away from the PIC unit while getting his chemo and couldn't visit the little guy.
Anyway, both son and grandson are home and doing well. Deb and I actually managed to get out to the boat last weekend and at least check it over. Maybe we'll actually be able to get out and sail soon.
