Yesterday, Tuesday December 6th, I met Dr. Kewalramani (henceforth to be referred to as Dr. K!) who will be the lead physician on the high dose chemo and autologous stem cell transplant which is the next and last step in my chemotherapy treatment.
The MSK stem cell and bone marrow transplant service is evidently a separate department. Dr. Zelenetz will be handing me off to Dr. K for the prep, the actual hospitalization, and the following two months after the hospitalization. Highly specialized stuff!
Because this is an extended post, I’ve tucked it away. Click just below to read the rest!
Dr. K – an extremely nice fellow – spent about 35 minutes with Brigid and I, outlining the entire protocol. First, the stem cell collection, spread out over up to six days, while at the same time a battery of tests, to rule out any other health problems that could cause issues during the therapy.
Dr. K had reviewed my file and actually wanted to get more pathology information!
He also said I needed another bone marrow test, since the last one, done before the chemo began, indicated I had CLL cancer cells (chronic lymphatic leukemia, the second lymphoma I have along with the mantle cell) in my bone marrow. He made the point that it wouldn’t make a lot of sense to stimulate stem cells, collect them and then re-inject them, if there were still CLL cells lurking in my marrow (That would just re-introduce the cancer cells). He felt this was extremely unlikely, but he wanted to rule it out with another bone marrow test.
We agreed to have the bone marrow test done the next day (that’s today, Wednesday the 7th). This meant stem cell collection would be delayed by a day, starting Friday instead of Thursday. After the tests, etc, are satisfactorily completed and my stem cells are collected
then we are probably looking at the actual hospitalization starting in early January.
The hospital stay would be “about three weeks.” I will receive high dose chemotherapy for six days, aiming to destroy the last of the mantle calls. As a side –effect, my immune system is destroyed. Then I’ll be re-injected with my own stem cells (that’s the transplant), and wait 10-17 days for my immune system to build itself back up. I will be in isolation the whole time.
The routine side effects, which almost everyone gets, begin about the time the stem cells are returned. This includes very low blood cell counts (I will need transfusions), nausea, vomiting, diarrhea, fatigue, infections, and especially mouth infections. All these are treatable, to a greater or lesser extent.
During this period, he said many people don’t eat anything. They live on fluids only. And of course the length and severity of these effects vary greatly from person to person.
The unusual (major) side effects include just about anything bad you can think of; starting with a variety of organ system failures, and in 1-2% of cases, death. The healthier you are going into the procedure the less likely these problems, but even with an otherwise very healthy person, there are no guarantees.
While hospitalized, my in-room activities are restricted only by how I feel. If I want to work online with the laptop, no problem. The exercise pedaling machine they could provide – OK. When I asked him about bringing in some dumbbells, he said that would be all right(!). When I told him Dr. Zelenetz’ comment when I asked him about the dumbbells, “Well it’s not a health spa. You are having a transplant” he just smiled.
After my cell levels are built up, I get to go home, but with restrictions for about the next nine weeks. Avoid crowds, restaurants, etc. They recommend not going to work for this period, but I explained that my two person office was only a mile and a half away, and there was no way I wasn’t going to work. And dietary changes. The whole idea is: don’t get any infections.
After our meeting with Dr. K, we met up with my good buddy Paul Novotny and his better half Doreen, to celebrate her birthday. We had dinner at Chartreuse, a relatively new French restaurant in Yonkers. Great meal – highly recommended.
Then this morning we went back to Sloan to have my bone marrow done by Dr. K at 9AM. After the procedure (it only takes about 15 minutes), we waited for David Rice, a Nurse Practitioner in the transplant department to go over further scheduling and give me an injection for a red blood cell builder-upper (“Darby”). While waiting, one of the schedulers handed me a print out, saying “since you were here Dr. K’s office decided to schedule you for an echocardiogram and a pulmonary function test.” So we went up to the 18th floor and got the two tests done (took about two hours, as you inevitably end up hanging around waiting .)
Afterwards we met with David, signed some authorizations, got the shot, and went over the scheduling. We left Sloan Kettering at 12:45, when we originally were sure we’d be gone by 10:30. But the two tests are now out of the way.
Here’s the upcoming (very tough) schedule. Friday morning stem cell collection – from about 8AM to noon. Sunday, cell collection, same time. Monday, cell collection at 12 noon, PET scan at 3:45, CT scan at 8PM. (Not a fun day). Tuesday and Wednesday, possible 8AM cell collections, and then an appointment with Dr. Zelenetz at 8:30AM Thursday.
A nasty week ahead!
The stem cell collections are actually tentative. It depends on my cell levels if we start on Friday, or if we wait. And the number of cell collection days depends how many cells they collect; some people only need one collection, others five. The average is three.
I haven’t been able to get to the gym since Sunday. I think this is the first time I’ve missed three days in a row since my chemo began. Will definitely go tomorrow.
So, got a lot done, but some crowded days are coming up.
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