Journal entry by Rita Young

Things are changing....

I had a CT scan of my lungs to rule out any breathing issues about three weeks ago.
Blood clot (which we technically already knew) not present. However, my liver shows up in scan AND the radiologist had to comment on it. Took them over a week to get that straightened out.
Scan done at local hospital, won't be doing that again anytime soon.
Results may show increase in liver tumor size, but not really clear picture.
This is a month before next scheduled scan to determine cancer progression.

Two days ago had an appointment with PA, after blood-draw and before chemo treatment.
Chemo treatment cancelled.
The tumor marker has been going up more than we like, small dip, extra reading, seems uncertain.
Scheduled a scan just to check and make sure we aren't missing anything.

Yesterday had a PET/CT scan to see what the cancer may or may not be doing in there.

Today was a LONG waiting day. Dr. Yee just called me....SIGH.
After some re-examining of the scans (at first they were saying scan unchanged) it appears that tumors in the liver are bigger or changed or something, regardless, not good.
Lungs look good and better or unchanged, this is GREAT news to me.

I have many things to consider over the weekend and Dr. Yee has some more info to gather.
He is trying to get me to agree to a biopsy of liver. Previously I decided no, for good reasons.
Now there are two potential immunotherapy drugs being considered. One is a trial, one is not. One requires biopsy (which yes, will also give us tissue to get other info, however I have also been told I probably won't qualify) don't think the other does.
I ask always about side effects and am usually told these drugs are very tolerable and I have to remind him he said the same thing about most of the other drugs I was on and they were poorly tolerated by me. This is an ongoing, constant conversation with my team. I am unsure if we are on the same page when it comes to "quality of life".

I have chosen to stay home this weekend and.........
Please no phone calls at this time, thanks.
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Journal entry by Rita Young

I will simply quote my oncology P.A....
"Liver lesions continue to SHRINK. GREAT NEWS."

FYI; lesions are tumors.

She sent me a message to tell me she had released the results of my CT scan and I could go ahead and read it. That is attached below.

I do have an appointment with my oncologist on Friday and we will talk about this further. And get more results from blood-draw.

And I will include pix from my last chemo infusion on the previous Wednesday. This is part of what it takes to get these numbers.

Journal entry by Rita Young

Since my last post we've been on "vacation", enjoyed mostly amazing weather and I have continued on same treatment plan.

Still on oxygen and weaning off of rehab. Have an appointment with a pulmonologist in Sept for a more detailed perspective.

I am more fatigued now, on this treatment, so a little less zip in my step.
Tumor marker dropped yet again to 123, this is where it was at about six years ago (on my first line of treatment). It's pretty darn amazing.

And, just to make life interesting I sprained my right wrist a week and a half ago. Doing everything left-handed (and without a trapezius muscle) is quite challenging.

Traded my Stand Up Paddle Board for a Pedal Boat, good trade. We have taken it out and really like it, works much better with an oxygen tank. And since I sprained my wrist, no canoeing for a while.

Journal entry by Rita Young

What a difference green grass, leaves on the trees, flowers blooming and just one more annual to squeeze in, makes in my life.

Short version, treatment is working, side effects are way more tolerable than expected.

Thank you, thank you, thank you to all the people who leaned in and helped us through the VERY LONG Winter and the CRAZY DIFFICULT treatment change. I am making an effort to thank you all individually and celebrate together with you.  Forgive me if I have missed you or haven't gotten to you yet. The party will continue on into Summer.

The rest of the story:
I have adjusted to oxygen, this took a while. I cart a tank all over the yard now and we are getting good at switching tanks on the fly.
I have to decide if I want to continue using tanks or switch to the portable exchanger, they say insurance won't pay for both.  I am pondering and checking with insurance myself (website down, so guess I get to call).
Every couple of weeks I learn something new. This week we talked to the manager of the place and are getting better delivery service and a few helpful tips.

Pulmonary rehab is going well, and like any change it's slow and imperfect.  The benefits are great and have helped me be more physical in my normal daily life. The breathing will take a while, sucking in is really diminished and taking a while to improve.

The drug is working!!!
Had my first follow-up scan and appointment with oncologist yesterday. I am pretty sure this is the most upbeat appointment I have ever had. It's often not a fun filled place over there on 2nd floor in the cancer center.
The tumor markers were our first indicator that things were going well. They spiked over 600 after first treatment (I was told this is normal, but YIKES). Less than two months later it has dropped to 214...yup, that's pretty amazing. See picture of graph.
Saw pics of the scan "numerous" tumors in liver are shrinking and my lungs are looking clearer, fluid around lungs is unchanged (small enclosed amount on one side, unchanged for years).

P. A. was cautiously optimistic last month, and the numbers where better than we expected. Now it's getting into the miracle zone. This is not the normal course of things, especially after 9 years of cancer in major organs. None of it makes sense, but I am thrilled with this treatment outcome.

The side effects are so much more manageable than all previous treatments. My hair has fallen out, but that doesn't hurt or cause me any physical problems. I have become accustomed to fatigue, it's a way of life now. I am able to eat a larger variety of foods, especially during my week off. My oncologist admitted that most patients tolerate the oral medications better than I did.
Doesn't matter, I am enjoying the heck out of Spring!!!
Keith and I can hardly stay in the house. We want to be out in the yard all the time.
Most days when we have to go to appointments in the Twin Cities there is an opportunity to stay longer and do something fun. We both look at each other and say, let's go home. Our life revolves around The Weather Channel, it's been good for the yard and gardens this year, but not so great for regular fishing (see pix below for the fish caught on opening day).

Journal entry by Rita Young

Please read previous update for all of those details, all that remains the same.

Saw my oncologist on Friday in the clinic. Gathered more details about this chemo regime. Was more confident in my decision.
Chemo starts on Tuesday in the clinic.

Bloodwork is good, according to him. Some numbers down at the very low end of normal. But he says my liver function is normal and livers can handle stuff like this pretty well. Tumor marker shot way up (usually it drops when I take a drug vacation?) so it is definitely time to get going with treatment.
Was so nice to see a good healthy white blood count, it will be short lived.

Yes, I am breathing better. My body soaks up the oxygen and is all adjusted and good with it.  However, the restrictiveness of using tanks outside the home is taking a LOT of adjusting.  We need to throw tanks in the back seat every time we leave, count hours, do math, make sure we have enough. With the weather warmer, just walking outside is an ordeal too.
Yes, a portable exchanger is in my future, but this takes time.

I have a pulmonary rehab appointment in two weeks here in St. Croix at the clinic. Hopefully we can figure out the scheduling nightmare that is my life to make this work.  They believe I can get my breathing function back.

The reality is, I am beyond overwhelmed.

Journal entry by Rita Young

Yesterday I said yes to IV chemo, starts Tue, April 23.
Once a week for three weeks, one week off, repeat...

Saw palliative care doc Thurs
Talked about how to best care for all my needs as we move forward.
She noticed my low oxygen levels, had a quick walk while there, recommended oxygen at home.
After I left, upon further review, she decided I needed 24/7 oxygen, started that evening.
Two days of supplies delivered to The Hope Lodge Thur evening along with 'The Blue Behemoth', indoor air exchanger for home(and sometimes away?).
Put it in my nose and called it jail, but I am adapting.
I am able to move around so much more, walk at a better pace, bend over and still be able to breath, it's a good thing.

Did a CT scan Thurs afternoon, just to make sure I don't have any blood clots in lungs, I don't.

Yesterday morning, difficult appt with P.A. in cancer clinic.
Explanation of doing no treatment, what treatment will look like. quality of life moving forward.
I said yes to treatment (not a confident yes), we will monitor as we go along.
I will loose my hair, fatigue, nausea, GI issues and some more. Unsure how it compares to the oral chemo I have been doing (for almost 9 years), it works a bit differently.
No liver biopsy & no port for now (quality of life), will revisit in future.

On Wed I did have pulmonary rehab assessment. Without the oxygen. She said it just wasn't registering correctly and set me up for the exercise program, without oxygen?
Need to reassess with oxygen on board and set up program, decided to do that here in St. Croix Falls. Is not set up yet.

P.A. explained my lung/breathing issues, sort of. Doesn't appear to be permanent damage? Rehab may help? Rehab, not at the top of the list.

Did not receive home visit yesterday afternoon for oxygen, as promised, so have a limited travel supply for the weekend.
Supposed to come on Monday, unclear if I get more O2 tanks then. "We deliver on Wed"
Someone dropped the ball, I have no idea how this all works.
Trying to find someone to monitor it all (I came into this without a pulmonologist, may try clinic here?)
The nurse at Cancer Clinic at U of MN is trying to get all this coordinated, not going well on a Friday afternoon.
Palliative care doc and her team at Southdale got stuff done for me in a few hours on Thurs afternoon.
Follow through is a mixed bag.

Social worker now involved, at Southdale but part of palliative care team, calling our local area for hospice options (not there yet, but need to have things planned as options are limited and different in a rural area)

Chaos abounds, my head is swimming, we are home for the weekend to rest up. Keith will be shoveling snow.

FYI; Palliative Care is anything that supports me from time of diagnosis up until hospice. Most people think of it as pain management, but it is so much more. Management of all symptoms.

Journal entry by Rita Young

Yesterday we had the oncology appointment I have been dreading for years. 
Here's what I can remember.

Reviewed scans.
The report stated growth of a tumor in the liver.
The scan showed the tumor, and a handful of others. This was a hard image to see and even harder to let sink in.
The rest of the scan, I guess same or better, don't really recall.

Recommending IV chemo, Abraxane.
Would like me to consider a liver biopsy (they are painful), it's not necessary.
We had the, putting in a port conversation, again.
I have been told I can be sedated for these procedures, but is confusing to me if this is true or not. They have promised this in the past and not followed through.

I am having trouble breathing (not a lot of fluid in there), so I am scheduled for a pulmonary function test on Friday.

I left the clinic to think about things, have committed to nothing and will get back to them.

There is more info swirling in my head, but can't get it organized and typed out.
I am numb and sad.

Updated info:
Pulmonary test rescheduled for Wed morning, followed by an appointment with P.A. (Lucy) in the afternoon.
Hopefully she can review results and we can talk more about potential plans.

My husband reminded me the Final Four is in town, so we DO NOT want to be in the Cities on Friday.

Journal entry by Rita Young

Saw my P.A. Lucy yesterday, she's amazing.
All regular blood-work good.  However, tumor marker is up, again and yes, this is three times in a row, a trend.  Now we look at a treatment change, an earthly form of hell.
Also, results of ultrasound were....different than expected. A mild increase in right side.  Yup, the right side, where this whole wild ride started out almost 9 years ago. An attempt will be made to remove the fluid.
She told us we are not pushing the panic button, this will be a slow, gentle process and she gave me a hug.

First, we gather lots of information.
Taking all the fluid gathered from area around lung and send it in for genetic mutation testing. I got in tomorrow morning for this procedure. I have been told in the past the right side is more challenging, we shall see.
Second, we do another PET/CT scan to see what the cancer is doing in there. It's been about a year, so that sounds about right.

Then they look at all of the information and decide what they want to recommend.

In addition to what Dr. Yee shared as possibilities last time, Lucy mentioned that some drugs. Drugs used for other kinds of cancer showed up as being a match for my mutations on my previous genetic testing.  If insurance would approve, and they are still a match and they think it will help, this is also a possibility. This is a new twist.

Today, another snow storm is hitting us and we are hunkered down for the day.

Journal entry by Rita Young

If you are visiting here today, don't forget to read previous post for full oncology update.

We all just learned that the medication I receive by delivery, and take twice daily, had restrictions on temp during delivery.  NOT able to be below 59 degrees, at all. It was all there in the fine print on the package insert and none of us read it (including the pharmacy that is responsible for getting it to me). I called the manufacture, yes big pharma, and they pointed it out to me and then later to the pharmacist who called on behalf of the delivery pharmacy.  They deliver it to all pharmacies using the strict standard themselves.

This would have been my fourth delivery done incorrectly.  Meds were on the truck yesterday, below freezing all day.  I do not have to receive or take these meds.

New meds will be ordered and waiting for me, at the warm clinic on Thursday.  I will miss two days, but no big deal if I know that ones I get will actually be effective. BIG apology from pharmacy and they will now ship them to whatever Fairview pharmacy I want (my request), no more cold or hot delivery trucks for my meds!

Wouldn't it be nice if this was the cause of the problems with tumor marker?  Probably not, but a girl can dream.

Adding this the next day Feb 6:
I am adding two pictures below after last night's snow fall.
One view is out front, the other is out back.
Today, this reminds me why I tolerate all this deliver stuff, driving and crazy scheduling(just rescheduled ultrasound for the 3rd time).  This is why...

Journal entry by Rita Young

Four days into February, having just survived the "Polar Vortex" as we wait. Waiting for the next oncology appointment, for more test results, for drugs to arrive, for trends to be determined, for what's next.

Saw my oncologist, Dr. Yee just over a week ago. Not quite the appt we expected.
Shortly before we walked in we got the blood test results, tumor marker has gone up more than anticipated.
He was unsure, if this is a "trend" yet, so we wait and see.
I had dramatic results from this treatment in the beginning, tumor marker dropping more than expected, so I thought that meant that it would last longer, nope.
He said this is about the right length of time and now we need to "pay close attention".  Meaning watch tumor markers, how I am feeling, fluid around lung, etc.  Again, not what I expected.
He listened to my lungs, unsure of if there was a change. I thought maybe I was coughing slightly more?  I have been very sedentary, so hard to tell if I am having more symptoms of shortness of breath.
Scheduled an ultrasound to determine if fluid is same or increasing (rescheduled appointment a week later, avoiding travel during the height of the polar vortex here), have test on Thursday.  There is a pic of me below showing the last time I was in for fluid removal.

With results from ultra sound and updated bloodwork we will show up at next oncology appointment with Lucy the P.A. in about 2 weeks. There we will determine where things are at.
This is the "wait and see" part that is so challenging and has become a way of life.

Today I was waiting for my shipment of drugs to be delivered. The delivery truck was about 3 miles away (thank you UPS tracking) and they pulled all the trucks off their routes due to icy conditions. After 3 hours of phone calls and questions to the manufacture of the drug (what happens if it freezes and thaws more than once) they decided to send a private courier to the UPS distribution center, get the package and deliver it to me here at home. Should arrive in the next couple of hours.
So, I wait and see.

Here are more details of oncology appt:

For the second time in a row, he talked about future treatments (usually I have to drag him into these conversations).  I was hoping to avoid this conversation, but nope.
There is only one new treatment option left I haven't tried and at this point I don't get to.  It's the only immunotherapy treatment approved for my kind of breast cancer, but i don't have the correct protein mutation/expression, so won't work for me.
This is the end of what's called targeted therapy or precision medicine options.  I had expected this much sooner, but I was able to do all three of the new CDK 4/6 inhibitor drugs, so milked a few extra years out of these treatments.  He told me that I am his only patient who took all three and had positive results.

The clinical trial he has been watching as a possible match for me hasn't started/opened yet.  It's a sister drug to the IV chemo I had been on 15 years ago (the one I did not tolerate well and needed to take a break from), they have made it into a pill form.  These are not as targeted as most of the drugs I have been on and often referred to a "chemo drugs".  I was on an oral chemo, Xeloda a while back, not so effective. It is what's called a phase 2 clinical trial.  In phase 2 they are determining the correct dosage, which usually means what is the most a person can tolerate.  I was on a phase 2 trial two years ago, it was pretty much hell.  This is something I am not excited about, like my oncologist is.

He also mentioned something about old chemo drugs, I think pill form, but am not sure that's what he said.  They can be effective. Something about his colleagues in Europe treating patients this way.  I just wasn't paying attention, didn't anticipate talking about these things yet.

So we wait to see when we will be having these conversations, at this point, not quite yet.

Our world has gotten much smaller, we are home much of the time, WAY less people contact, so many less relationships, fewer activities.
Lot's of screen-time for me, many more sedentary hobbies.
I have made some good solid adjustments to this very different lifestyle and after 8 1/2 very long years I am finally experiencing less anxiety.
This is not the life we planned for, but is the life we have been given, so we do what we can to adjust to it.

We recently binge watched a TV series filmed in Southern Australia that has brought us great joy.
If you have Amazon Prime we highly recommend it; McLeod's Daughters. So much of it is filmed outside, in a very mild climate (it rains at Christmastime), it has been good for our souls, especially in the middle of Winter.
Rita’s Story

Site created on May 22, 2010

Welcome Friends and Family

To follow along with us on the journey.  
Scroll down to 'Feed' to read the latest journal entry.

I have been diagnosed with metastatic/stage 4/terminal breast cancer. 

May 3, 2010  it was discovered that I had small nodules between the lining and lung sack on my right side.

We returned to U of MN Cancer Clinic for treatment.

The cancer has continued to stay there and as also moved to some lymph nodes in the chest area.

I have been on four different drug treatments.  I stay on the drug(s) until they appear to stop working, do scans, if results are stable treatment continues, if progression of cancer then change drug treatment, repeat, repeat, repeat.  There is no cure, so this continues until all treatment options have been tried or the side effects become too difficult.