Julie and her
brother, Greg. Stockholm, November 2009
Julie on a snowy, morning walk in Stockholm … doctor’s orders!
March 2009
March
20, 2009
March
13, 2009
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November 23, 2009
Julie is in Sweden. Everything has gone according to plan
so far. She is now waiting for her cell culture to mature. She is keeping
busy by exercising a couple of times a day, reading, watching TV, knitting,
and listening to audio books. Julie writes “Winter in Stockholm is pretty depressing. It has snowed
twice since I've been here. Lately, the weather is not too bad, though it did
rain all day yesterday. At least it is not freezing cold with a biting wind.
I have been able to enjoy short walks almost every day. I guess the good
thing about being here is that I am really catching up on my sleep. It is
dark so many hours of the day that I am sleepy all the time. The sun never
gets very high above the horizon so it always feels like twilight around
here. It does strange things to one's biological clock.”
Julie plans to return home on December 9.
October 13, 2009
Julie is returning to Sweden! She finished her current
chemo series on September 23 and is feeling much better. Her tumor markers
are looking good and her last CT scan showed some improvement. On November 2,
2009 Julie will head back to Sweden to get more tumor-reactive lymphocytes.
The cells will be harvested, propagated in the lab, and re-infused back into
Julie where they will begin fighting the cancer right away. The process will
take 4 to 5 weeks. Julie’s brother, Greg, and friend, Toby, will be keeping
Julie company for the first part of her trip. She wishes it was not winter
again for this visit, but this time she has a better idea of what to expect.
She will be staying next door to the apartment she had last time so the
neighborhood will be very familiar and comfortable. She is looking forward to
having a larger army of cancer-fighting cells.
We’re not talking much about hair these days. Julie has
some peach fuzz growing back. Hats and her wig are helping her get by.
August 27, 2009
Julie celebrated a birthday this month. This birthday was
extra-special since the past year has been so difficult. We are hoping that
Julie has many more!
Chemo continues….The good news is that two of the three tumor
markers that the doctor monitors have returned to the normal range and the
third marker is very close. This means that the disease is being reduced. We
are hoping for favorable results on Julie’s next CT scan, too. That will be
in mid September. The doctor says that after two more chemo treatments Julie
can take a break. She was extremely happy to get that news.
Julie’s strength, stamina and appetite are gradually
returning. She has gained back 10 pounds of the 35 she lost this year. She
and Diana are trying to take fairly long walks three times a week during
their lunch breaks.
July 24, 2009
Julie is continuing on her chemo regimen every other week.
She had chemo this week, so she has been sick for the last several days, but
she is feeling well enough this morning to go into work for a few hours.
Julie’s test results have been good and bad lately. The bad news is that she
now has some cancer in her spine and pelvis. The doc has added another chemo
drug to stop the spread into the bones, and it may also kill off the cancer
that is there already. The good news is that her tumor markers are rapidly
approaching normal, which indicates that we are getting the disease under
control, or at least stabilized. We are hoping that once we get it down to a
reasonable level the Swedish cells will really kick in and she can get off
chemo for a long while. She would like to go back to Sweden and get some more
cells once she is off chemo.
Julie’s breathing is very close to being back to normal. She
can climb four flights of stairs at work now and be only slightly winded. So,
we continue one day at a time, grateful for each day and the small victories!
June 17, 2009
It appears that the chemo and the cells are working.
Julie’s most recent set of tests shows improvement. The areas of metastasis
on her liver have decreased slightly and other areas remain stable. She will
continue with chemo for another couple of months. If the disease has
stabilized enough at that time then she may go back to Sweden for more cells.
She says that this chemo regimen (FOLFIRI) is not as hard on her as the
previous one (FOLFOX). The down side to this regimen is that she will most
likely lose all of her hair. Julie has a cute pixie cut right now since she
has already lost about 30% of her hair. Yesterday she went to the American
Cancer Society and picked out a wig. She is pretty upset about losing her
hair, but like everything else she has endured, she is rolling with the
punches and trying to make the best of it.
Julie’s breathing is slowly improving. She is able to take
deeper breaths now without pain, and does not get as winded when climbing
stairs. She is about ready to leave the oxygen tank behind during her daily
walk around the neighborhood. It is slow going, but every little improvement
is so welcome. They are really helping to boost her spirits.
Julie finally returned to work this week. Diana has been
doing a fantastic job of holding down the fort, but is very glad to have
Julie back.
May 9, 2009
After having her right lung cavity “tapped” three times to
drain the fluid, Julie and her doctor decided it would be best to have a
procedure called pleurodesis. It is unknown why the fluid build-up is
occurring. It could be an indication that the tumor-reactive lymphocytes are
fighting the cancer in this area. Pleurodesis “glues” the pleura in the lung
cavity to each other so fluid can not build up in between the layers anymore.
Julie was admitted to the hospital on April 29th. During her stay
she had almost two and a half liters of ascites drained from her abdomen as
well as the pleurodesis. She was released on May 7th and is now
recovering at home. Her lung volume looks great on the x-rays, but she is
still having some trouble taking deep breaths. She is exercising everyday in
hopes of improving that.
More diagnostic tests are on the horizon for next week.
The last tests indicated that the tumor–reactive lymphocytes might not be
keeping up with the progression of the disease. Her doctors agree that the
most prudent course of action at this time is to have a few more rounds of
chemo in order to give the lymphocytes a chance to catch up. The chemo will
not hurt the lymphocytes. Some patients have actually shown a synergistic
effect when using both therapies together. Julie is disappointed to be going
back on chemo, but is hoping for the synergistic effect.
Julie has been off work since her hospital stay, but hopes
to return at the end of May or early June.
April 9, 2009
Julie arrived home safe and sound on March 25. She is so
happy to be home in warm and sunny Maui! The day after Julie got home she
visited the doctor to see about her breathing problem, which had continued to
worsen. A chest x-ray revealed pleural effusion (liquid in the lung cavity)
on the right side. The next day the doctor drained out 1.8 liters of fluid
and Julie’s breathing improved dramatically over the next couple of days. The
fluid built up again, so this past Monday she had another liter drained out.
Hopefully, the fluid build-up will stop soon. Julie will have some general
monitoring tests later this week, and we hope for good news on those.
Depending on how the tests go for the next two months she may or may not be
returning to Sweden for another cell transfusion. Time will tell.
March 20, 2009
The cells are finally ready! Julie received her second
transfusion of 10 million supercharged cells today. After two months in
Sweden Julie is definitely ready to go home. The care here has been superb.
Everybody has been so kind and helpful to us, but there is no place like
home!
Julie has been having difficulty breathing for the last
few weeks. It has gradually been getting worse. The doctor felt that some
liquid is accumulating around the right lung, but that the risk of draining
it now would outweigh the benefit. He is hoping that it might be reabsorbed
without medical intervention.
March 13, 2009
We were supposed to be on our way home earlier this week,
but were delayed by a couple of things. First, the second culture of cells
did not grow as fast as we had anticipated so we have to wait two more weeks
for them to grow.
Second, Julie came down with jaundice last week due to
obstructed bile ducts. She has become progressively more yellow and more
fatigued in the past week as the bilirubin has built up in her system. Today
the doctor placed two stents in her liver to open the obstructions. It was an
outpatient procedure done by endoscopy. We were thankful that another surgery
was not necessary.
February 27, 2009
Julie received her first transfusion of 22 million cells
today. The lab said the cells were very strong and active. We hope they will
get to work killing the tumor cells immediately!
Julie has been trying to get out and walk everyday as
recommended by the doctor. It is a challenge for her in the cold of Sweden’s
winter. She is looking forward to being home in warm, sunny Maui in a few
weeks.
January 27th, 2009
Julie traveled to Sweden last week and had surgery today.
The surgery was several hours longer than expected due to numerous adhesions from
prior surgeries. The doctor was able to fix a few problems arising from tumor
growth on her stomach and small intestine. He harvested the cells needed for
the adoptive immunotherapy from two different areas. It will take about one
month before the lab will finish working with the cells.
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