Blog for Jackie Sue while at the Mayo Clinic, Rochester, MN. UPDATED. This blog now covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic.

Friday, March 31, 2006

Transplant -12 (Friday)

During our visit yesterday with the transplant nurse she stressed how important it was for Jackie to maintain high nutritional levels. She shared with us some of the tips for building caloric intake. She told us which place in town sold the highest caloric content milk shakes, etc. we went to the grocery store! This was just after we consumed fat-encrusted steaks at the local steakhouse; complete with "cheesy hashbrowns" and home made bread with garlic butter.

At the grocery store it was a no-hold-barred feeding frenzy! We came home with bags and bags of super fattening cakes, pies, ice creams, etc. As an example:

We have Ding Dongs AND Ho Hos
We have TWO different kinds of ice cream sandwiches and three flavors of Hagen Daz
We have PIE filling - to eat by itself
We have WHOLE milk

We even bought a bottle of syrup that cost $1.00 more than a similar sized bottle simply because it said "buttery flavor" on the label!

There wasn't a diet, fat free, or low-carb purchase made.

The only problem? The transplant nurse didn't tell ME to maintain a high caloric intake. Oh well...I guess I'll just have to suffer!

Bruce and Jackie
From the Mayo
PS. Jackie read the blog. She asked me to inform everyone that is was YOURS TRULY that purchased the Ding Dongs, Ho Hos and Hagen Daz. It was also ME that had the cheesy hashbrowns. But it was HER that paid $1.00 more for "buttery" maple syrup!!! Bruce

Thursday, March 30, 2006

Transplant -13 (Thursday)

Today Jackie had one of two preliminary Rituxan treatments. It required most of the morning. She tolerates these treatments reasonably well. Her next treatment is scheduled for next Wednesday. At that point the transplant process begins in earnest.

We spent about 2 hours this afternoon with one of the transplant nurses. I guess you could call it an indoctrination session. She explained the general routine and covered how she felt Jackie might progress (or not). When she learned that Jackie's donor was a 10 point molecular match she seemed very relieved. She said this was very unusual and she felt Jackie would make better progress. She said that they do transplants with as little as a 4 point match. She stated those patients usually had a difficult time.

I think the biggest point she tried to make was just how drained and tired Jackie would feel during the transplant. It seems there will be a 3-4 week process when Jackie will not want to get out of bed. She impressed upon on us the necessity of being active so as to avoid pneumonia. Jackie will be treated as an outpatient. She will go inpatient only when she faces a complication or is too sick to live at the apartment. The center here at the Mayo is unique in that respect. You can go from inpatient to outpatient status simply by showing up at the transplant desk and saying, "I want in". The process is very transparent.

We did learn a couple of things today we didn't know (or we had forgotten). On the actual day of the transplant Jackie will get a preliminary 4 hour course of IV fluids through her surgically implanted Hickman port, then the transplant, and then another 4 hours of IV fluids. The do this to protect her kidneys by constant flushing.

As a note of interest Jackie's blood type will change after the transplant to match that of the donors (if his type is different than what she now has). When you realize that your blood type - the one you were born with, will completely change for the rest of your life it kind of crystallizes just how life altering a transplant will be!

Wednesday, March 29, 2006

Back in Rochester

Well, we are back in Rochester. We left Pryor about 7:00 AM this morning and arrived in Rochester just before 5:00 PM. Jackie and I actually felt almost "at home" when we walked into the little apartment.

Jackie will take her first chemo treatment in the morning in preparation for the transplant. She will be taking Rituxan, which she has taken many times before. Her next treatment won't be for another week. So....we will be cooling our heels with little to do for another week. Beginning next Wednesday, however, things will happen quickly. She will receive here second Rituxan treatment followed by four days of Fludarabine chemo treatment. There will be a day of rest (I'm sure she will need it) and then a one-course radiation treatment. At this point she will be treated inside the hospital. The day after radiation she will receive the transplant. We talked with the transplant coordinator and we are a "go" for April 12th.

In the few days we've been away from Rochester the climate has improved dramatically! When we left the snowmobiles were running around the rural areas. Now the snow is all melted and the temperature tomorrow is supposed to be nearly 60 degrees. The ponds are still mostly frozen, so it is a long way to Spring.

Thanks for checking in....

Bruce and Jackie from Rochester
Note to: Joel and David Lapidus...the absolute range for a BMW 745 is 649 miles. I was able to complete the trip from Pryor to Rochester on one tank of gas. The mileage equates to about 26 mpg. Not bad!

Wednesday, March 22, 2006

Wednesday in Rochester

Not a lot to report today. Jackie had appointment with the psychiatry department, the dermatology department, and the dental department. She passed all departments with flying colors (although I kidded her about being a little shaking during the psychiatry interviews:)).

We are leaving at 6:00 AM for Pryor on Thursday. We should be in Pryor around 4:00 or 4:30 PM. We have about a week free before we must return for the beginning phases of the transplant.

We missed our Thursday dinner date with Stanley Lapidus, but we toasted him with a beer at the City Cafe (below Newts) this evening.

Until Later,

Bruce & Jackie.

Tuesday, March 21, 2006

Transplant update Tuesday

Well, I skipped the update for Monday. We had no doctor visits so there wasn't any new news.

Today we met with the transplant nurse coordinator for about 2 hours and the transplant doctor for about 30 minutes. Here is what we know...

Everything is in place for a transplant on April 11th. The insurance company still hasn't officially approved the process but we expect to have this by tomorrow. The pre-transplant work will begin on May 30th. That's when the chemo will begin.

The donor is a 29 year old male. That's all we know. His is a molecular match on a 10 of 10 scale! This is very good news indeed! There are a couple of minor mismatches, but this is about as good as it gets. In many ways this match is better than a sibling match. It provides a better graft versus leukemia effect (ie. less of a chance for serious complications and relapse). The fact the donor is male presents a few problems but also provides a few benefits. All-in-all the good probably outweighs the bad.

Jackie will be undergoing a slightly different protocol than has been used in the past by the Mayo for her chemo regime. She will receive a couple of doses of Rituxan in addition to the usual dose of chemo treatment. She has taken Rituxan on each of her past chemo treatments so it is nothing new. The protocol they are using is the latest "improvement" to the program.

Unless she sees a rapid increase in lymph node size or some unforeseen increase in her CLL counts she will undergo a mini-transplant. She will receive about 1/6th - 1/7th the normal dose of radiation and a reduced amount of chemo. As I mentioned before, the stem cells will do the "heavy lifting" to fight off any remaining traces of CLL. A mini-transplant is the latest trend in CLL stem cell transplants. The long term side effects are greatly reduced. Even with the mini-transplant they have promised she will lose her hair - post-transplant on day 7. It is kind of amazing they can pinpoint this with such amazing certainty!

From the time the transplant takes place we will be in Rochester a minimum of 100 days. The 100 days is a milestone date. It is usually at the 100 day mark that the chemo "port" is removed. This is a device that will be implanted a few days before the chemo begins. It is a surgically implanted catheter that is attached to the superior vena cava leading to the heart. It sounds like a serious surgery, but is done in a matter of minutes under local anesthesia. One hundred days also marks the point at which many patients are allowed to return home for short durations. We are told we can expect to be allowed to return home for 2 to 3 weeks at a time once past the 100 day period. The duration spent at home is increased as the patient makes progress at recovery. Checkups will be quite frequent for the first 2 years.

I learned today that there are 11 transplant doctors at the transplant center. I asked if what sort of transplants they covered; heart, lungs, kidneys, etc. I was told the had ELEVEN doctors who specialized in leukemia and blood related cancer transplants only! I truly believe if you came to the Mayo Clinic with a disease that only caused bad breath on Thursdays they could come up with a specialist to treat THAT disease!

We have appointments with the doctors again on Wednesday. After Wednesday we don't have any other appointments until March 30th. Therefore, we will probably drive back to Pryor on Thursday for a short stay.

From Rochester,

Bruce and Jackie
Oakwood Broadway Plaza
15 1st St. SE
Apt. 707
Rochester, MN 55904

Sunday, March 19, 2006

Sunday in Rochester

Well, not much to report. We had the weekend off. In fact, we even have Monday off. Jackie has more tests on Tuesday, Wednesday and Friday. We will hopefully know more on Tuesday. That is when we meet with the transplant doctor.

Today we went to the monthly flea market. It is held in the Civic Center which is connected to our apartment by skybridge. Afterward it was lunch at Olive Garden for lunch and a visit to the mall. Unfortunately we cannot buy anything - because we cannot transport it back to OK when we leave. The car was soooooo full when we made the trip up there is absolutely noooooo room for anything new on the return trip.

Bruce and Jackie

Saturday, March 18, 2006

Saturday in Rochester

Jackie was feeling MUCH better again today. Her cold seems to be improving!

This morning we took a drive to Red Wing, MN. This is the hometown of the famous Red Wing shoes and work boots. It is an interesting small town on the river. We visited one of the local antique shops before returning to Rochester. Along the way we say lots of people snowmobiling. That's something we aren't used to in OK!

Upon return we made a trip to the local Target for groceries, etc.

Tomorrow we will probably attend the monthly Rochester flea market. Sounds exciting doesn't it????

If you would like to see some video of the apartment here in Rochester you can visit the following link:

You will need to copy and paste it into the address bar on your web browser.

Bruce and Jackie

Friday, March 17, 2006

Friday in Rochester, Sunshine

Well, the day dawned bright with lots of sunshine. Unfortunately the temperature isn't scheduled to be above freezing for at least the next week.

We've settled into our little apartment. It certainly isn't home, but we'll make do. Both of us wish for a true sofa in the tiny living room. We only have a small twin sized Hide-A-Bed loveseat. Jackie put a $39 KMart sofa cover on it to make it look more presentable. A few throw pillows added will make it more comfortable.

Jackie is feeling MUCH better today. She seems to be getting over her cold. Yesterday was really hard. By the end of the day I was pushing her around in a wheel chair. Today she is almost back to normal.

Today brought another battery of tests. Today she has a consultation with the radiation specialist, an echocardiogram, and electrocardiogram, a thorough eye exam (with eyes dilated), a radiation measurement (to synch the machine to her body size/shape), plus a couple of tests I can't remember as I type this.

It is amazing how efficient the Mayo can be. They are able to cram a full week's worth of tests into a single day. You move from building to building with hardly a hiccup. When you arrive they already know you are coming in, the doctor has reviewed your charts, the nurses have prepared their parts, and you are in and out of the appointment in record time. RARELY is there any sort of delay! For those accustomed to waiting in a doctor's office for an hour or more just to be treated rudely by the nurses and hurriedly by the doctors this place is a real eye-opener!

We learned this morning they seem to have her scheduled for a "reduced intensity mini-transplant". This means she will receive 1/6th of the normal radiation dosage and probably a much reduced level of chemotherapy for the transplant. Instead of treating her two times per day for 3 or 4 days with radiation she will only have a single treatment. It will still reduce her immune system to a dangerous level, but the side effects (cataracts, lung problems, secondary cancers, etc.) are greatly minimized. This is very good news.

This COULD change and is dependent upon her bone marrow results. But as it now stands this is the type of transplant we can expect. It is cutting-edge and can only be done on patients in good general health. It uses the donor stem cells to do the "heavy lifting" in killing off the errant CLL cells. In the past, they waited to perform the stem cell transplant on patients as a last resort. At that stage most patients had become "refractory", or immune to most chemo treatments. In other words they were on their last leg. To add insult to injury they gave them full myloablative (massive) radiation and chemo treatments to kill off their immune systems. They then infused donor stem cells in hopes of transplanting a new immune sytem. In many cases the patient was too far gone and too sick to recover from the massive chemo and radiation. The Mayo (and most leading transplant centers) now try to treat the patient with a stem cell transplant as a front-line defense. If they can get the disease into a very good remission status (and Jackie is, indeed, in good remission status) they can then perform the "mini" transplant. The donor stem cells (rather than the massive radiation) go about finding and killing off the offensive CLL cells that can hide in various parts of the body. This is called the graft-versus-leukemia effect.

Well, enough medical stuff for now. We have the weekend off and don't resume appointments until next Tuesday.


Bruce & Jackie from Rochester

Thursday, March 16, 2006

Thursday in Rochester

We left Pryor about 6:00 AM on Wednesday morning for Rochester. We arrived in Rochester about 4:00 PM. We were moved into the apartment by 5:30.

Jackie didn't feel well during most of the trip. The cold she has been fighting for over a month "came back" after the last chemo treatment. Last night she actually had a fever.

Today we began the testing process at 8:00. She started the day off with a bone marrow test. Unlike her first test in Tulsa, she was sedated and the process went very well. The entire process only lasted about 30 minutes. The sedation they used only lasted minutes, but was quite effective. She had no major pain. The nurse said they were able to get good samples. Her first test in Tulsa was a dry aspiration because the marrow was heavily infiltrated by CLL cells. I assume that her marrow has improved with the chemo treatments.

After the marrow test she was required to provide about 15 tubes of blood.

Next came a chest X-Ray.

She is now undergoing a full body CAT scan.

Next we visit with a social worker about the transplant.

We also have a full day of tests on Friday. We have the weekend off and resume tests and appointments on Tuesday, Wednesday, and Friday of next week.

Until later,

Bruce and Jackie from Rochester, MN

Tuesday, March 14, 2006

Headed for Rochester

Well, it is Tuesday March 14th, 2006. Tomorrow we will leave for Rochester. In OK the temperature has been in the 80s. Yesterday they had a foot of snow in MN.

Keep reading the blog. I'll keep everyone posted on how things are going. This time I am taking the video camera and Apple computer and I hope to be able to post "Jackie" videos during our stay.

Bruce from Pryor