healing touch program @ stanford

the one thing we quickly learned after trish's diagnoses was the more people we spoke to about the situation, the more doors it seemed to open.

after speaking to by boss, jane (not to be confused with sister in law jane), about trish, she recommended a program that she has been a part of for a number of years... and i didn't even know.

jane is involved with a Women's Health program at Stanford Hospital for Breast cancer patients called 'Healing Touch'.

from the 'Healing Partners' website:

the goals of the program are:

* To promote relaxation and reduce side effects in women undergoing treatment for breast cancer.

* To increase overall energy levels and the ability to cope with challenging life events.

* To serve as an adjunct to conventional cancer treatment.

* To monitor changes in physical symptoms, mood and quality of life in program participants.

Healing Partners is a community-service program that pairs women diagnosed with breast cancer with Healing Touch volunteers who provide ongoing sessions for six months.

Healing Touch is a gentle, non-invasive form of energy work that promotes deep relaxation and is used to manage the side effects of chemotherapy and radiation, such as fatigue, nausea, loss of appetite, pain and lymphedema.

Sessions last about 60 minutes and take place with the client lying fully-clothed on a massage table.

yesterday, during our break between the blood lab and dr. carlson, we met with the head of the program, Kathy Turner, and registered.
trish is really excited about this opportunity, and will begin her sessions next thursday.


oak

chemo, part II

as with most 'chemo' days, we met with dr. carlson and dr. telli on tuesday.
dr. carlson finally received the results of trish's her-2 test (a test that was supposedly ordered by PAMF the week of April 7th.)

the results of the her-2/neu test are positive, which means there will be a change in the chemo recipe and schedule. this is the same course of treatment trish would have began had the test results returned sooner.

trish finished up her "1B" cycle of CAF chemo yesterday (only took 1 nurse 2 attempts to find a vein), and will continue with her cytoxan pills for the next 7 days. she will still have 14 days of no pills/ivs/doctors/chemo/etc.. but beginning may 20th, her regimen will change.

trish will begin on the drugs taxol (paclitaxel) and herceptin (trastuzumab) by IV, once a week for 12 weeks.

when this course is completed, she will switch from 'CAF' to 'FEC' chemo every 21 days for 3 cycles. the cytoxan will now be administered by IV, rather than the 3-4 pills trish currently takes for 14 days. (this is good for trish)

FEC
-----------------------------
5 fluorouracil (5-FU)
epirubicin (Ellence)
cyclophosphomide (Cytoxan)


dr. carlson recommended the herceptin/taxol followed by 'FEC' regimen based on the conclusion of the Buzdar study at MD Anderson:

"Presenting the findings at the American Society of Clinical Oncology (ASCO) meeting, Aman Buzdar, M.D., professor in the Department of Breast Medical Oncology at M. D. Anderson, reported that more than 65 percent of early stage, HER-2 positive patients experienced a complete response rate after receiving Herceptin with chemotherapy compared to 26 percent of patients with similar tumor types who received chemotherapy only.

Buzdar said that because the results were so striking, the Phase III trial was halted early after accrual of 42 of the originally planned 164 patients. After reviewing results of 42 patients and finding the overwhelming increase in complete response, Buzdar and his team stopped and revised the trial so that all M. D. Anderson patients newly diagnosed with early stage, HER-2 positive tumors receive Herceptin plus chemotherapy prior to surgery. "

when this course is completed, trish will continue on herceptin alone every 3 weeks for a 12 month duration
it will be during this time that surgery will be scheduled.

trish is still feeling pretty much the same as the weekend... little nausea here and there, but nothing too bad..


oak

the new do...

our friend (and trish's hair stylist), jennifer tozi, came over today to give trish a new haircut.

trish is now sporting a cute little above the shoulder number. we both laughed when later in the night she tried to put her hair up in a ponytail, and there wasn't anything to ponytail...

it will be a few weeks before the doctors expect trish's hair to begin (un)naturally falling out, but trish wanted to go with a shorter feel prior to that.


oak

6 days later...

its been six days since trish began her chemo treatment. her next infusion will be tomorrow.

so far trish is feeling pretty good, all things considered. she experiences a little nausea and fatigue here and there, but nothing that has kept her in bed all day. her sleeping has been decent considering she hasn't taken any of the sleep medication prescribed in the past 7 days, nor any of the anti-nausea medication prior to bed over the past few nights.

each day she has been able to get out of the house and be active. this morning she went to caden's gym class down at the rec center and this past weekend was scattered with trips to the market, target, toysrus and church... along with plenty time spent with caden in his backyard sandbox.

in the past, trish has experienced really bad morning sickness lasting over 5 months. in a way this has helped her prepare for the chemo symptoms. she has been queasy and tired since january, so this isn't much of a change.

she knows it will get a little rougher after subsequent doses of chemo, but she is ready for it. tomorrow she will receive her two drug IV of adriamycin and 5-FU, while continuing to take her cytoxan pills over the next 8 days.
may 6th - may 19th will be a time of no treatments, no iv's, no pills... just relaxation when not chasing caden around.


we both would like thank everyone again for all their support...
the visits, phone calls, emails, cards, flowers and food have all made a our lives a little happier and easier these days... we truly, truly appreciate it.

we welcome folks to stop by, but there will be a sign on the door (thanks ginger and riley) if we are accepting visitors at that time. we ask you clean your hands with the purell next to the front door, and leave any sick ones at home. the next couple weeks, trish's immune system will be at its lowest, so its vital that we keep her healthy.


thanks all

oak

an update on tuesday's chemo treatment

On Tuesday, April 22nd Trish began her chemo regimen.

Dr. Robert Carlson has prescribed her 4-6 months of 'neoadjuvant' chemotherapy.
'neoadjuvant' is basically defined as chemo prior to surgery, with a goal of shrinking the cancer before it is surgically removed.

Trish's specific chemo is what as known as 'CAF', with a cycle that is two weeks on, followed by two weeks off.

the cycle:
--------------------------------------------------
4/22: chemo
4/29: chemo
5/6: off
5/13: off
5/20: chemo
5/27: chemo
etc..


the 'CAF' chemo:
--------------------------------------------------
cyclophosphomide (Cytoxan)
doxorubicin (Adriamycin)
5 fluorouracil (5-FU)

Cytoxan: these are 50mg pills which trish takes every morning of her 14 day chemo cycle, alternating between 3 and 4 pills a day.

Adriamycin: is red in color, 27ml are administered intravenously, via a syringe manually injected by a nurse. this process takes 12 minutes

5-FU: is clear in color, 18ml are administered intravenously, via a syringe manually injected by a nurse. this process takes 5 minutes



typical "chemo" day schedule:
--------------------------------------------------

• arrive at the cancer center on the campus of stanford university medical center
• go to the blood lab to get blood drawn for tests
• visit with Dr. Carlson, review blood test results and treatment progress
• go to the Infusion Center where the chemo is administered
• go home and rest
  

this whole process can take between 2 - 7 hours depending on how long we need to wait between appointments. the chemo injection itself is only 17 minutes long. tuesday took about 6 hours total, but 2 of these hours was during the time it took 3 different nurses, 4 attempts to find a vein of trisha's. another 2 were spent in the waiting room.

trish has experienced some fatigue and naseua over the past couple days, but not enough to keep her from doing a little cleaning around the house, some shopping and going to caden's swimming lessons.

Trish, Caden AND Oak

This is the family we know and love!

Some pictures to make you smile...

A quick note

Hi Everyone,

First, I want to say thank you for all of your prayers and good thoughts. We finally heard some good news that we have all been hoping for. Trisha still has a challenging journey ahead of her. With that said, I just wanted to publish a quick note about visiting the Barretts over the next few months. As you may or may not know, the chemo drugs put Trisha at a high risk for infection; her immune system will be weaker than it normally is. Please do not come over if you or your kids are sick. Also, there is hand sanitizer right outside her front door and on the inside - please use this. It's for you! :D

Thanks,
Cerena

P.S. Keep posting comments on the blog - Trisha and Oak read through all of them and it definitely helps them get through this challenging time.

finally... a little bit of good news

today we received the test results of the Bone Scan and CT Scan trish underwent last friday.

bone scan: negative... trish does not have any cancer in her bones
ct scan: showed cancer in the breast, but the cancer has not spread to any other organs


trish, cerena and i are currently sitting in the waiting room of the chemo department at stanford.

she will begin her first treatment sometime between now and 3:30pm.

Thank You Everyone

I truly feel blessed to have such a wonderful support system around me.

Thank you everyone for all of your positive thoughts and prayers.

The last few days have been very tough, but I am now ready to take this head on.

I know with everyone by my side, we will beat this.

Please don't be afraid to stop by and give me a hug.

Thank you again for your love, support and strength. All the little things everyone has done has made this easier to handle.


Love,
Trisha

Dinner Sign-Up Part 2

All,

Thank you all for your quick response to the dinner sign-ups. For a moment there I felt like I was selling Wiis... they were gone within minutes! I spoke to Trisha and Oak and they'd like to reopen up the field. I went into the sign-up list and removed everyone who volunteered for more than one day. Please understand that many people want to help, and this is a small way that they can. Please take one day and leave the next slot for someone else. This also gives Trisha and Oak the opportunity to visit with new family and friends.

http://www1.mysignup.com/cgi-bin/view.cgi?datafile=barrettfamily

Thanks for your understanding.
Cerena

P.S. Trisha is moving toward a very balanced diet in hopes that it'll help her beat this disease. Please try to bring veggies, fruit, chicken, fish and other healthy meals. We are meeting with a nutritionist and hope to have more guidance for you soon.

The Latest

Trisha had a Bone and CT Scan done on Friday at Stanford. These tests will determine if the cancer has spread to other parts of her body. Let's all pray that it hasn't! Tuesday is a very big day for Trisha. She meets with Dr. Carlson again to talk about the results of her tests, (Body scans, hormone receptor and HER2) to discuss the treatment options and to start her chemo.

You were sent as an angel...

You were sent as an angel, to be loved and adored
But God had a plan for you, to do so much more

Your presence brought to light, an illness so rare
That prompted an outpouring of loving and care

We will never know your smile or laugh,
But we know you created the clearest of paths

Our hearts will never forget what you mean,
To your mother, your father, your brother and me

Your purpose was not to be but one more,
But to give the chance to fight and be cured

Mama Lina, Framma, Poppie and more,
Wait for you with open arms at the door

As you enter Heaven, with the greatest of ease,
Please watch over us as we beat this disease…

Dinner Sign-ups!

All,

Many of you have expressed interest in making dinner for Trisha and Oak. In an effort to organize this, I've created a sign up sheet for Monday, Wednesday and Friday of each week through June. I will update the blog with preferred foods and drinks. Please visit the sign-up sheet today and sign-up!

http://www1.mysignup.com/cgi-bin/view.cgi?datafile=barrettfamily

Your support and help is appreciated.

Cerena

Recommended Course of Treatment

In my posting last night, I failed to mention what Trisha's suggested course of treatment is. The doctors have recommended the following: Chemo (Cytoxan, Adriamycin, and Fluorouracil)- This will start on Tuesday, April 22nd. She will go every 2 weeks for 4-6 months, depending on how she responds to the therapy. After that they will consider whether or not another drug (Taxol) needs to be added, which may add another 4+ months to the chemo treatment. After chemo, she'll have a mastectomy and then radiation. She may also need to go through Hormone therapy if her Hormone receptor tests come back positive. Keep in mind that this may change.

2nd Opinion at Stanford

Today, Trisha was fortunate enough to meet with one of the top Oncologists in the Bay Area, Dr. Bob Carlson. After examining her, he changed Trisha's diagnosis. It turns out that Trisha has a very rare and aggressive form of cancer called Inflammatory Breast Cancer (IBC). The cancer is diagnosed by how it looks (red, looks like the peel of an orange, etc) and feels. This type of cancer is usually late Stage 3 or Stage 4. Given this diagnosis, Trisha and Oak had to make a decision that no one ever wants to consider. They are going to terminate the pregnancy on Thursday so that Trisha can get the optimal care she needs for her well-being. It breaks my heart to have to report this, but I know you are all interested in how she's doing. She has a CT and Bone Scan on Friday at Stanford to see if the cancer has spread to other parts of her body. After she gets the results, she will be starting treatment at Stanford on Tuesday, April 22nd. As you can imagine, this is all happening so fast for all of us. Trisha is 100% committed to fighting this and she will do whatever it takes to get healthy. The next week is going to be unbearable. Please call first if you plan to visit and keep the visits short. Phone calls are always great too. I can always be reached at cfaggiolly@sbcglobal.net if you want to ask questions or check on her. Thank you all for your support and love. It is so very needed at this time.

Trisha's Team

Many years ago I made a commitment to myself to take a proactive stance in wiping out Breast Cancer.  It has touched many of our lives in ways that we cannot explain.  This year I have a new inspiration, my friend Trisha.  I would like to put together a team that will walk 60 miles in 3 days.  A team that will walk in Trisha's honor.  A team that will walk for hope.  Hope for a cure!  This year's 3 Day will take place the weekend of September 5-7, 2008.  If you are interested in walking please contact me by e-mail at jeanniewynne@yahoo.com.  If you would like more information please go to the 3 Day website at http://www.the3day.org.  Feel free to join me at an informational meeting that will take place on Tuesday, April 22nd from 6:00-7:30 at the Redwood City Public Library.  If you decide to attend this meeting you MUST RSVP by going to the 3 day website, clicking on calendar and selecting the "Get Started Meeting" on April 22nd in Redwood City.  Then you will be prompted to RSVP.  This journey will be challenging and very emotional, but such an amazing way to support Trish and all the other courageous women and men battling this disease!

Strike Out Cancer

5th Annual Strike Out Cancer Day at AT&T Park

Sunday, May 11, 2008 (Mother’s Day)
San Francisco Giants vs. Philadelphia Phillies
1:05 p.m.

In partnership with the San Francisco Giants and The Wellness Community, Genentech has teamed up for a fifth consecutive year in 2008 to help "Strike Out Cancer" in the Bay Area. The Strike Out Cancer program empowers people with cancer and their loved ones to take a team approach when facing cancer, and encourages them to learn about support networks and educational resources. For someone living with cancer, the support of fellow patients, professional counselors and loved ones can often be just as important as receiving the latest treatment regimen and medical care from their doctors and nurses. Through the Strike Out Cancer Program, Genentech makes a $200 donation to The Wellness Community for every strikeout thrown by a Giants pitcher in a regular season home game.

Sunday, May 11 (Mother’s Day) is Strike Out Cancer Day at AT&T Park. The first 20,000 fans will receive a commemorative pink SF Giants/Genentech baseball hat. Come out to the ballpark and show your support of the Strike Out Cancer program and the Giants as they take on the Phillies.

Thank you for your Support!

Trisha and Oak are so thankful for everyone's support during this challenging time. The calls, visits, cards, flowers, food (to name a few) have been appreciated. Please keep in mind that Trisha and Oak are in the process of making some critical decisions around next steps in getting Trisha healthy. Hopefully this site will provide a lot of the updates you are looking for. I can also field any questions that you have - just email me at cfaggiolly@sbcglobal.net.

Thanks again. Trisha and Oak are so lucky to have a great support system in place!! 

UCSF

Dr. Alvarado spoke with Trisha and Oak on Friday and suggested that they meet with the Oncologists at the Cancer Center. He said that in speaking with his colleagues, they are suggesting the Neo-adjuvant therapy (chemo first), then deliver the baby at 30 weeks, and then have surgery. Quite a different recommendation. Trisha is going to meet with the Oncologist sometime this week (week of April 14th). Trisha is probably going to start treatment sooner rather than later. The great thing is that the Oncologists at the center are nationally recognized doctors and they are the top specialists in this area so Trisha will be getting the very best care.

Back to the Oncologist

On Friday, April 11th, we went back to PAMF to meet with Dr. Priya again. Priya said that she believed it was entirely possible to continue with the pregnancy and the treatment. She had been in touch with some colleagues who had studied breast cancer during pregnancy. In a study in Texas of ~20 women, the overall outcome was that the women responded well to therapy and the babies turned out OK. She suggested that Trisha move forward with the surgery, then complete 2 cycles of chemo (once every 3 weeks) and then deliver the baby early. This is the timeline:

Currently 15 1/2 weeks Pregnant
Have Surgery within 2 weeks (17 weeks)
Takes 4-5 weeks to recover (22 weeks) She would even feel comfortable starting chemo at week 23
Do 2 cycles of Chemo - once every 3 weeks (29 weeks)
Recover for a few weeks
Deliver at 32 weeks

The chemo regimen that is being suggested is Adromycin and Cytoxin. Both are administered by IV. The treatments take 3-4 hours. The treatments can cause nausea but there are some medications that they can give to her that are safe for pregnant women.

After discussing the options, the doctor felt Trisha's lymph nodes and felt the growth. She suggested that Trisha get into surgery sooner rather than later.

Surgeon at UCSF

Trisha was lucky to get in touch with her nephew Daniel's English teacher at Sequoia High School. His teacher has gone through this herself and had a wealth of information and resources to share with Trisha. One of her recommendations was to get in touch with the Cancer Center at UCSF. After sending an email, Trisha received a call from the Head of the Surgery at the Cancer Center. She arranged for Trisha to meet with a surgeon on Thursday, April 10th. Trisha, Oak and Cerena met with Dr. Michael Alvarado, General Surgeon, on Thursday in the late afternoon. When we arrived, he met us at the front desk and suggested that Trisha do a mammogram and biopsy of the lymph nodes to get a better idea of what we were dealing with. Trisha was slightly hesitant (apparently the breast tissue in younger people is more dense and harder to see) but it turned out that it wasn't so bad. The people at the imaging center were very reassuring and accommodating. In meeting with Dr. Alvarado, we found out that there was in fact a mast in her lymph nodes. He saw something on the film and he felt it when he examined her. Ugh! We again went through the surgical options that Trisha has. The approach at the center is slight different than the approach PAMF was suggesting. Dr. Alvarado suggested a therapy called Neo-adjuvant. This is giving chemo up front and shrinking the tumor and the potential threats that may (or may not be) floating around the body; then having the surgery after. He said that a Lumpectomy was very possible because of the size of the tumor (2cm - which is relatively small). His next step was to get in touch with the Oncologists at the center and see if they would feel comfortable giving Chemo to Trisha while being pregnant and at what point. He said he would email the case to his colleagues and see what their recommendation is. He promised to get back to Trisha and Oak by Friday (the next day).

The Surgeon

After meeting with the Hi-Risk OB, we met with the Surgeon at PAMF, Dr. Runi Chattopadhyay. Dr. Runi went through some surgical options for Trisha. Dr. Runi explained that there are basically 2 options for women with breast cancer. Either A) A Lumpectomy (just remove the lump) or B) A Mastectomy (full breast removal). Each option has it's pros and cons. The Lumpectomy is a targeted surgery where the lump is only removed. While the majority of the breast is left in tact, there is a 15-20% risk for recurrence and a risk that the entire tumor was not removed. Given this, the surgeon recommend that Trisha do a mastectomy. She also suggested that Trisha meet with a plastic surgeon to have a tissue expander put into place during the removal surgery. This expander would allow for an implant later down the line. There are some risks with going into surgery while pregnant. For instance, the risk of blood clots is higher because of the cancer AND the pregnancy. After this meeting, we collectively decide that we should get a second opinion to hear what another surgeon might think.

Meeting the Hi-Risk OB/GYN

On Wednesday, April 9th, Trisha, Oak and Cerena went to meet with the Hi-Risk OB/GYN, Dr. Druzin at Lucile Packard. After some administrative complications, we finally met with the doctor. Dr. Druzin did not have the specifics of Trisha's situation, so Oak and Trisha tried to bring him up to speed as quickly as possible. He gave us a general overview of what considerations Trisha should make for the baby when considering treatment. Dr. Druzin's general message was that Trisha should get the treatment she needs irrespective of being pregnant - basically that her well-being is the most important thing. He said that after she met with the Surgeon and the Oncologist and received their recommendation for treatment, he would weigh in on the situation.

Meeting with the Medical Oncologist

The next week after the diagnosis was a complete whirl-wind. Trisha immediately met with the Medical Oncologist at PAMF, Dr. Priya Chakravarthi. Steve and Oak were there as her support system. The doctor went through the possibilities of treatment and discussed the uniqueness around Trisha's particular situation (being 15 weeks pregnant). She ordered further tests to help get a better understandings of Trisha's situation.

The Results

On Monday, April 7th, Dr. Hoff requested that Trisha come into the office for the results of her biopsy. Ria and Steve accompanied Trisha to her appointment for support. To everyone's shock and disappointment, Trisha was told that she did have breast cancer. Given the state of her pregnancy, Dr. Hoff recommended that Trisha get moving quickly on next steps. He put her in touch with a Medical Oncologist at the Palo Alto Medical Foundation (PAMF) and a Hi-Risk OB/GYN at Stanford.

The Ultrasound & Biopsy

On Friday, April 4th, Trisha & Oak visited the Palo Alto Medical Foundation so that she could have an ultrasound of the lump. The feedback was that they thought it was suspicious and they recommended that she have a biopsy. Trisha immediately went to have a biopsy of the lump. The procedure was pretty painful, but as you can expect, Trisha was a trooper.

A lump

During one of Trisha's prenatal visits, she mentioned that she discovered a lump in her breast during a routine self-exam. She asked the doctor to feel it to see what he thought of it. He felt it, and called the nurse in to get her opinion. Both were in agreement that she should have an ultrasound of the lump.