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.

Monday, July 31, 2006

Monday +111 (Morning) w/Afternoon update

Jackie received a mid-week set of blood counts last week. The results were mixed. Her RBC count dropped from 10.8 to 10.5. Her WBC count dropped to 1.7, but her ANC count moved upward and was at .500. This count makes her marginally neutropenic. Fortunately she has not experienced any neutropenic fevers. Her platelets improved to 102.

For most of the week she felt fine. However on Saturday and Sunday she experienced a high level of nausea with vomiting on Sunday. In fact, she felt as badly as she did at +20 or +30. Today she feels better, however.

I really feel that since the Cyclosporine is being tapered she is experiencing some GvHD in her stomach and gut. I think that was the case before the taper and was the cause for her nausea, etc. As the anti-rejection drugs are tapered it makes the likelihood of GvHD a real possibility. Hopefully her body will adjust and the nausea will subside.

She receives another CBC today. Hopefully her numbers will be up. Without the growth factor shots there is a strong possibility they will be down. We return to Rochester at the end of this week for doctor's visits and blood tests. It is possible they will remove her central line, but with her counts still very low I don't have high hopes for this happening. Of course leaving the line in also presents problems as line infections are very common. As with the whole process this is a delicate balancing act.

UPDATE: jackie just got blood tests back from this morning. In spite of what I thought might happen her counts improved (for the most part) a great deal! her RBC (Hgl) rose to 11.8 from 10.5. Her WBC count rose to 2.9 from 1.7 with her ANC gong to 1.6 (1600) from .5 (500). her platelets retreated a little to 89 from last week's 102. All-in-all a good report. We look forward to the day when these numbers "hold" and don't fluctuate so much!

Until later...

Bruce and Jackie
From Pryor

Monday, July 24, 2006

Monday +104 (Afternoon) Latest Counts

We returned to Oklahoma Saturday evening. Jackie has felt good since the return home. We are scheduled to return to the Mayo Clinic in two weeks for a follow up visit.

As most readers know, Jackie continues to struggle with low blood counts. She received a growth factor shot on Friday afternoon, another on Saturday after our return home, and one on Sunday. She will receive another today. This morning she had a CBC conducted in Tulsa and some of her counts have declined in spite of the growth factor shots. Her total WBC count has improved to 1.9, but her neutrophils (ANC) have dropped to the 300 level. Obviously this is of great concern as she is subject to infections and fevers. Her platelets have also dropped into the 80s range. While not dangerous, any decline is worrisome. The good news is that her RBC count has improved to 10.8.

The doctor's don't seem terribly concerned and feel this is "par for the course". For many people it takes upwards of a year before blood counts improve to normal levels. Jackie will have another CBC later this week. Hopefully her counts will have recovered somewhat.

We were saddened to learn over the weekend of Ruth Lapidus' mother in Israel. Our thoughts and prayers go out to her and her family. I believe her mother was 93 at the time of her passing.

Until later....

Bruce and Jackie
From Pryor

Friday, July 21, 2006

Friday +101 Test Results, etc

Ok, first things first. Jackie did not get her central line removed. They wanted to leave in in for another couple of weeks to make certain her CMV didn't pop up again. When they made this decision her CMV test from yesterday had not been completed. By the time we received the test results (which are negative for the 6th or 7th time) it was too late to get the line removed. Actually the central line is nice since it keeps you from being "stuck" for the various blood tests. The danger is that an infection can occur in one or both of the lines and it is a foreign object protruding from your body. At this point it is also very painful to change the dressing since the skin underneath is quite tender. Jackie cries whenever the dressing is changed.

The test results overall were good. Her chimerism is still at 100%. Her PET scan was very good with no indications of any unusual activity. The PET scan shows area of hyperactive growth by using radioactive glucose. Glucose is consumed by the body when high levels of metabolic activity are taking place. So, for example, if you have a tumor that is reproducing it is consuming a high level of glucose. The radioactive isotope in the glucose injection Jackie was given would concentrate in areas such as the lymph nodes, etc and allow the doctors to determine the level of CLL that might remain. While they were able to determine that Jackie was in the process of digesting one of her many pills inside her stomach, they were not able to see any unusual activity related to CLL!

The doctor feels Jackies decreased blood counts could be related to at least one of her medicines. It is the oral form of the Ganiciclovir that could be causing the problems. For that reason they discontinued the medication. They also begin another series of growth factor shots. She received her first shot today. She will receive another 3 over the course of the next three days.

Jackie still continues to have difficulty in eating. The last two days have been especially difficult. What with all the tests and the interruption to her normal schedule she has not eaten much at all. She continues to lose weight. Her total weight loss is now over 50 pounds! She was nauseated much of the day and was vomiting this morning. She continues to have nausea with vomiting this evening.

Along with the oral form of the Ganciclovir they discontinued a couple of more drugs. One was a "three-a-day" liver function pill made from bear (yes the four legged kind) gall bladder. She was glad to see this one dropped. They are also reducing her Cyclosporine (anti-rejection drug) dosage by 25 mg every 2 weeks. At this rate she would be at a zero level in about 20 weeks. The reduction in Cyclosporine could easily trigger GvHD. In my opinion Jackie's nausea and vomiting is due to some GvHD in her stomach and gut. Reducing the primary anti-rejection drug could easily make the condition worse. Of course it is possible the stomach upset and nausea is caused by the Cyclosporine and a reduction in dosage will improve the situation. Only time will tell.

We did not receive the results from her bone marrow biopsy. They were not available before leaving. Hopefully there will be no surprises when the results are received. None are expected.

We have been cleared for another 2 week visit home. We will return around August 4th for more follow-up tests which will include a CT scan as well as additional blood work.

Finally, I want to remind everyone that Jackie is once again neutropenic. With her ANC count at only 440 she is highly subject to disease and infection. Please be careful if you plan a visit. The growth factor shots should increase this count quickly, but at this point she cannot stand to be sick from a cold or the flu.

Until later...

Bruce and Jackie
From Rochester, MN

Thursday, July 20, 2006

Thursday +100 (Afternoon)

So today is the magic day! Day +100. The day we once thought would never arrive!

We began tests yesterday. The primary test was the bone marrow biopsy. This test requires they drill a hole in your hip and remove marrow via a large diameter needle. Fortunately Jackie was sedated and didn't feel a thing. Later in the evening she had some pain, but it wasn't too bad. On Wednesday she had somewhat of an "off" day. Nausea, no appetite, etc. Today she is better.

We began the day today with a bone marrow density test (a scan), bloodwork, a chest X-ray, a PET scan, a mammogram, and more bloodwork. It is now 3:00 and hopefully we are about finished. We received her bloodwork numbers a few minutes ago. They aren't as good as I had hoped. Her RBC (Hgl) was 10.3 which is down from last week's 10.8. Her WBC count is low. It has dropped to 1.3. Her ANC level is .44 which is below the threshold of .50. This makes her officially neutropenic and subject to fevers, infections, etc. Her platelets have dropped to 98. Of course these numbers can vary from day-to-day, but I had certainly hoped they had all improved.

Tomorrow we meet with the doctor. I suspect he will order some growth factor shots in an attempt to increase her WBC count. If he feels Jackie is ready they will also remove her Hickman central line tomorrow. I am a bit hesitant about returning to Pryor with her WBC count so low. If she were to run into difficulty I might not be able to get her to Rochester. So, I don't know if we will be returning on Saturday as planned.

To top things off, I imported 18,500 fishing lures from China. They are sitting in OKC and the idiots from US customs won't allow them to pass through because they don't have a tiny sticker on the bottom that says, "China". They want me to remove all 18,500 from their Cellophane packaging and apply a sticker. All this while some terrorist is trying to figure out how to import plutonium for a dirty bomb and people are smuggling in heroin. Anybody have any contacts at US Customs?

Until Later....

Bruce and Jackie
From Rochester

Monday, July 17, 2006

Monday +96 (Morning) Back to Mayo for 100 day follow up

Just to let everyone know, we will be heading back to the Mayo Clinic on Tuesday in preparation for the +100 day series of tests. Jackie will received another bone marrow biopsy, a PET scan, as well as a series of blood tests. She will also have her central line removed.

Overall, Jackie has been feeling well. She still has good days and bad days but the good days seem to now outnumber the bad days. She still has problems with food, nausea, and vomiting but overall it seems to be getting better. She is eating more things and her appetite seems to be improving. I think a lot of her problems with food stem from the medications she takes; most likely the Cyclosporine. They will begin tapering several of her drugs after 100 days. The Cyclosporine will taper over 90-180 days. Of course she could see some serious GvHD when this happens so we are still crossing our fingers!

Although we don't get daily blood counts, I feel her counts must be OK. Her energy level seems better so her RBC (Hgl) is probably improving. I was looking at her old records from before the trasplant last night. I noticed that her WBC, ANC, and platelet levels are actually better today than they were prior to transplant. Her RBC was substantially better than it is today. Prior to transplant her RBC (Hgl) was about 12.8 compared to today's 10.8.

Once we have results from the +100 day series of tests I will post them here.

Until later...

Bruce and Jackie
From Pryor

Thursday, July 13, 2006

Thursday +92 (Afternoon)

I thought I would update the blog for all those who are reading from afar. I know there are a great number of people who are reading this and really don't know Jackie other than by the posts and videos they have seen on this site.

Jackie is doing well. Her blood counts have improved. Her RBC improved to 10.8. Her WBC count improved to 2.8 (with an ANC of 1.5). Her platelets are now in the normal range at 156. Her CMV test was again negative this week (now 5 tests in a row)

She is still having good days and bad days. For example, yesterday she was sick most of the day and vomitted twice. Today she is fine.

We will return to the Mayo Clinic in the next 10 days for her 100 day round of tests. I will continue to post every few days or once per week unless something changes.

Until Later...

From Pryor,
Bruce and Jackie

Thursday, July 06, 2006

Thursday +85 (Afternoon)

Just a quick note to let everyone know we made it home OK. I was a little slow in updating the blog due to the fact that I haven't re-installed the computer at home. My work computer was hesitant to restart after being idle for 4 months.

The decision to allow Jackie to return home came as a surprise. We had a late appointment with the doctor on Monday. Instead we met with a transplant nurse coordinator. The doctor left instructions with the nurse to release us for a home visit if Jackie's blood counts reached acceptable levels. Her RBC (Hgl) was 10.4. Her WBC count was 2.4. Her platelets were 117. Barring complications she is released until her +100 day tests.

We rushed around to fill prescriptions and gather test kits that will be used in Tulsa for the CMV and Cyclosporine tests. Her blood levels will be tested weekly while at home. Hopefully her levels will remain steady (or increase). If not, she will require more growth factor shots or a return to Rochester.

Once we had the prescriptions gathered we headed for the apartment to finish packing. Jackie had little energy and did her best to help but in the end I had to pack the car and the remainder of the apartment. I finished around 10:00 on Monday night. We departed Rochester at 4:00 AM and arrived in Pryor at 3:00 PM.

Jackie has had a couple of good days. Of course lots of family and friends have been by to visit. Today she has been tired with quite a bit of nausea. All-in-all she seems improved, however.

After 4 months away Chloe (the dog) does not seem to recognize her. Of course there is no way to tell what she is thinking, but she definitely doesn't behave like Jackie's best friend. One has to wonder if the transplant changed the way Jackie smells to the dog. Crazy? Maybe not! Jackie has always had dry, itchy skin. Since the transplant her skin texture has become more normal. It seems to have a little more oil. I'm certain a dog could smell/notice the change. In any case, Chloe seems to be slowly coming around to the fact that Jackie is someone she likes.

I will continue to report every few days on Jackie's condition. Should it change I will update the blog.

Until later...

Bruce and Jackie
From PRYOR!!!

Monday, July 03, 2006

Monday+82 (No, fireworks in Pryor) HEADED HOME




Sunday, July 02, 2006

Sunday +81 (11:30 PM)

Just a short update tonight. Jackie had a good day today. We had our growth factor shot this morning. Upon return to the apartment she was tired and rested for a couple of hours. This afternoon we were able to go on a 4 hour ride over around the Mississippi River and Pepin Lake. We crossed over into Wisconsin and circled Pepin Lake. This is a nice area with lots of small towns and a tourist area. I think every motorcycle in the US shows up at the lake on weekends. We must have see several thousand around the lake.

This evening we watched Lonesome Dove on the Hallmark Channel. This is a summer tradition at Nantucket. Usually on the first night we arrive we watch a Bee Gees concert and the last two nights before departure we watch Lonesome Dove down in the theatre. I'm not sure how this got started, but we've done it for 4 or 5 years.

All-in-all Jackie had a good day. She had some tiredness and a little pain, but better than past days. Tomorrow we have a 7:00 AM hospital visit for blood tests, a 7:30 AM growth factor shot, an 11:30 AM Pentamadine antifungal inhalation treatment (done once per month) and a 1:30 doctor's visit. So busy day. Depending upon her counts we may be released to come home. This time we aren't getting our hopes up, however.

Until later....

Bruce and Jackie
From Rochester, MN

Saturday, July 01, 2006

Saturday +80 (11:30 PM)

Today was day 80. We are 4/5 of the way through the 100 day process. Another month passed today. I knew this not because it the July 1st, but rather because my electronic room key quit working. Of course it quit outside the 2nd floor security door with an armful of groceries. This meant that I had to leave the groceries, go down stairs, out the building, back through the main front door, up to the third floor office, deal with the key issue at the office, and then return to the second floor skyway security entrance and retrieve the groceries before returning to our seventh floor apartment. I hated to buy any more groceries, but Jackie can eat so few things and we were out of anything she likes. Really she doesn't like anything, but she tolerates a few things. I picked up a small watermelon, some cucumbers, and two six packs of Boost (a high calorie milk shake type drink).

We made the trip the the hospital this morning for the growth factor shot. By the time we had returned Jackie was out of energy again. She got back in bed and slept for another 1.5 hours. We then went to the Olive Garden for a late lunch. She was nauseated and ate almost none of the meal. Upon return to the apartment she became nauseated and had a great deal of stomach pain. She took a pain pill as well as some antacids and began to feel better about 7:00. We ended up watching Gone With The Wind for 5 hours. This was the first time either of us had ever seen the movie through to completion.

We will be back at the hospital at 9:00 AM for another growth factor shot. Fortunately she didn't have the excruciating headache. On Monday we will have more growth factor, blood tests, and early afternoon an appointment with the doctor. I suppose if her counts are improved she will have another decision to make with regard to a return home. I don't think either of us will get our hopes up for an early return. Even if we were to return home we would need to find a doctor (maybe her former doctor) to manage her 2 or 3 time per week blood tests. At present she gets her central line flushed with sodium citrate (SC) rather than the usual heparin. This, alone, would create problems. Even here at the Mayo Clinic it is difficult to get the SC flush. We always end up waiting for the pharmacy to mix it and send it to our area of the clinic. In Tulsa it would probably be non-existant. The switch was made from heparin to SC in the hopes that it would not decrease some of her counts. To be honest, I don't think it has made any difference. They have switched anything they could think of that might cause depleted blood counts to something else. For example, we just switched from Doxycycline to penicillin. There is a remote chance that Doxy could reduce white blood cell counts. Hopefully all these changes will result in increasing and steady blood counts.

So not much to report.

Until Later...

Bruce and Jackie
From Rochester, MN