The End of Paclitaxel (Taxol) for Breast Cancer by Diann

Denise, Diann's son, Tyler, and Diann

Denise, Diann’s son, Tyler, and Diann

Special thank you to my sister, Diann, for writing this Blog Post to share her experiences with Taxol during her 5 months of chemotherapy for Stage 3 Breast Cancer.  She had her last Taxol on October 20, 2015     Denise

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First, I would like to thank all the women out there who have written Denise, my sister, about my breast cancer diagnosis and sent your prayers and support. It means so much to me! This road is only understood by someone who has walked the same road!  I told Denise I thought I understood breast cancer treatment because I watched her go through treatment.  Going through it myself, I realize I had LESS THAN a 5% understanding of what extreme suffering a breast cancer patient goes through!

When my sister first asked me to write a blog post about my experiences with Taxol, I was a little hesitant as I had never written a blog post.  But, I will give it a shot.  These are my experiences with Taxol (Paclitaxel)- I had the 12 weekly dose version as my Oncologist said they have find there are less side effects by spreading it out.

I have found all of chemotherapy to be very trying. Adriamycin Cytoxan chemo did not treat me well. I felt like giving up. . Everyone told me Taxol would be better, and while it is better, it is not as good as I had thought it would be in my head! And because of that, I struggled with acceptance of the road I’m on.

I get chemo on Tuesdays. The thought of going and preparing for chemo is always worse than getting the actual infusion. After the infusion, I feel quite good and can go out to eat on the way home. I don’t sleep well on Tuesday nights though—I feel like I’ve had 12 cups of coffee! I’m told it’s  the steroids.  I am on an extremely low dose of steroids, the chemo nurses told me, however.  So I am grateful for that aspect!

Wednesdays I still feel pretty good, though fatigue hits after work. On Thursdays, I wake up fatigued, but I do go to work and manage about 5-6 hours. After struggling to get home, I’m in the recliner with my feet up. It seems like I live in that recliner.  Fridays and Saturdays are the same – living life from the recliner!

I watched Downton Abby, the award-winning PBS series to pass some of the time in the chair. So I pulled it up on Amazon Prime, and I watched all five seasons (like 50 episodes) in two weeks!  That tells you how much sitting I do!

I did have one Tuesday when I got the flu (vomiting, diarrhea, and a low grade fever). I was seeing the doctor that day for my infusion so I went, not knowing if the side effects I was having was the flu or just a side effect of chemo. They sent me to their cancer urgent care area and gave me 2 hours of fluids and meds to stop the diarrhea. No chemo that day! And the result was after the flu passed in a couple of days, I felt better than I had in months. This was a welcome break for me.

Here are the side effects I experienced during Taxol:

Heartburn often very severe

Extreme fatigue

Significant Coughing and mucous

Bloating

Some nausea and gagging

Chemo rash on my face

Constipation and diarrhea

Then even MORE Fatigue

High heart rate (110+)

Elevated liver enzymes

My blood counts stayed really good throughout Taxol, so said my chemo nurses.  I tried not to pay too much attention to them as it would make me feel worse!  Everyone is different in this area!

My Food Cravings:

During AC – hot dogs and onion soup (salt I guess)

During Taxol – Tomatoes, watermelon, more onion soup

I’m trying to drink 68 oz of water a day (especially the 3 days following chemo) and taking a regular Claritin daily. I’m hoping the water will flush out the chemo (I hate smelling it in my urine!) and the Claritin stops the cough I developed.

I do ice my hands and feet during chemo. I did this one for my sister! I didn’t want to do it because I would have rather reclined in the chemo chair and relaxed during the chemo infusion.  Denise finally convinced me it would definitely help me from losing fingernails and toenails, and maybe even help or stop neuropathy which is a common side effect of Taxol.  As of my last infusion,  I still have finger and toe nails with occasional numbness in my hands and feet which comes and goes.  My Physician’s Assistant said it is okay if the neuropathy comes and goes, but to let her know immediately if it stays.  So far, I am happy to report, it has not stayed.

Let me say I’m very happy to be closing the door on Taxol.  Wiith God’s grace, I won’t be back.

My next step is Radiation.  I will let you know my experiences with Radiation.

After Many Seasons of Suffering, Light Appears

Some days the stars align, and you know, not just hope, that God is in control.  That happened to my family today.  My sister, my mom and I have had hundreds of medical appointments over the last four years for treating breast cancer in all three of us. We have separately and together driven thousands of miles to commute to our cancer center in Ann Arbor, Michigan.  But on October 20, 2015, it culminated in six medical appointments within a few minutes of each other at the University of Michigan Comprehensive Cancer Center.  You couldn’t have planned it that way if you tried.  Some of the appointments had been made a year previously long before my sister’s diagnosis in March, 2015.

At 11 am, my sister, Diann, was receiving her sixteenth and final chemotherapy for Stage 3 breast cancer in the chemo infusion area after 5 grueling months, my mom was in an exam room for her 6 month check-up for Stage 1 Breast Cancer with Megan, our Physician’s Assistant, and I sat in another exam room with my (our) trusted Oncologist, Dr. Daniel Hayes for my semi-annual checkup which included a yearly mammogram.

The circumstances that led up to all of that happening at precisely 11 am at a busy cancer center were mind boggling.  None of it was planned as my sister had her last chemo postponed one week because she had the flu on an earlier infusion date.  My mammogram had been scheduled a year out and ended up being several weeks later than it should have been.  Mom’s checkup was changed and her appointment had been made 6 months earlier.  None of us realized that all of this was happening on one day and time until a few days prior to the appointments.

As we were leaving Diann’s house at 7:00 am in the pitch dark, Diann’s neighbor was out walking her dog with her sister who was visiting from out-of-town.  Her neighbor, also a cancer survivor, told Diann her entire church had been praying for her.  Then her neighbor introduced her sister to Diann.  Her sister’s name was “Joy.”

desertpictureAfter arriving at the cancer center, Diann and mom went to blood draw while I went to Mammography.  The blood draw area at the cancer center was packed. The tech you receive to draw your blood is randomly chosen out of many, many techs on duty.   Diann’s name was called.  The woman who would draw her blood on her last chemo infusion day was also named “Joy.”

Diann then went on to chemo, mom went to her appointment, and simultaneously in my exam room, Dr. Hayes had just reviewed my “CLEAR MAMMOGRAM” results from my remaining breast which had been administered earlier that morning.   Dr. Hayes questioned me, “Can you believe it has been four years since your diagnosis?”  I laughed and said, “I never thought I would be here four years later.”  Dr. Hayes sort of shrugged his shoulders, his body language saying he hadn’t been too sure either!   We have developed a doctor/patient rapport over the years and he jokingly said, “I should send you a fruit basket or something because of all the business you’ve brought us.”  I bantered back, “Absolutely you should.  I used to have a day away coming to Ann Arbor for medical appointments, now I have to bring the whole family with me!”

After test results, more appointment scheduling, reviews of Diann’s radiation schedule, a flu shot, the chemo drugs arriving an hour earlier than usual, and a myriad of future tests and evaluations for genetic testing, Diann, mom and I met up again in the blood draw area to walk together to the car.

While exiting the parking garage and handing over 50 cents to a new garage attendant,  I casually asked him, “Where should we go to lunch?  We have to celebrate my sister’s last chemo.”   Ann Arbor is known to be one of the restaurant capitals of the world, so I was expecting him to say somewhere close to the hospital.  Instead, the young man said that his favorite restaurant was 20 miles south.  I responded that we were headed south, so tell me the name of the restaurant.   He responded “Roy’s.”

In the car there was an immediate gasp, a knowing smile, and I saw tears fill Diann’s eyes.  You see, Roy, is the name of our beloved father/husband who died 16 years ago from pancreatic cancer.  My dad wanted us to know he, too, was in on the celebratory events of the day!

What a day of coincidences and good news.  Plus, two Joys and a Roy brought us much hope and encouragement!

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The Two Kinds of Cancer Patients – A Survey – What Kind Were You?

Diann, my sister who is in the midst of chemotherapy for Stage 3 breast cancer, was settled into the bed at the cancer center as the Oncology Nurse, Erin, came in with the drugs. Erin had been Diann’s nurse a couple of times before, so Erin knew that we were sisters and that I was a breast cancer survivor who had been through chemo at her cancer center.  We had  developed a rapport with Erin. She said to Diann, “Your blood counts look good.”  Diann’s response:  “Great.”  I’m sitting in an adjacent chair and ask Erin, “Can she get a copy of her blood counts?”  The nurse smiles and hands Diann the copy.  Diann immediately hands it to me as she was not interested in looking at the numbers.

As Erin is hooking up the drugs, the steroid shots looks a little different than usual.  I say to Erin:  “What dosage is she getting today?”  Erin smiles at me and then gently laughs and says:  “You know, you sisters represent the two different kinds of cancer patients I see.  One is laid back and lets the nurses do the work and asks no questions, and the other kind needs to know everything going on.  Neither kind is better and as chemo nurses, we appreciate both kinds of cancer patients.”

And we all laugh!       firewater2

Diann and I have different styles – we always have, we always will.  I envy her style and she envies mine.  Well, she might not tell you that, but she has to, don’t you think?  But I believe she is the better patient.  She trusts her doctors, her nurses, and lets them heal her.   Certainly, I trust them, but I need to know details, facts, studies and statistics over the past 10 years.

Please answer the following poll – thank you!

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