medication – Page 2 – Life As I Know It

🎂 Birthday Month 🎉

June 1, 2024

It’s my favorite month of the year – mostly because it’s warm and sunny and summer; also because my birthday is the 26th. This year I’ve decided to celebrate all month, I deserve it! (Heck, we all deserve it!) I will be 55 this year. Next month is my 5 year anniversary of living with Metastatic Breast Cancer (MBC). 5 of 55 years with cancer. That doesn’t count the 6 months I dealt with it back in 2009.

Anyway, yay! The cancer is stable.

I have had 6 infusions of Enhertu and it seems to be keeping the cancer quiet. I’ve noticed that my hair is falling out a bit more, it’s quite thin. I’m also taking a fair number of medications to keep other side effects at bay.

I discovered that the steroid I get as a pre-treatment actually helps with the pain in my hip. So, for the time being I’m taking additional steroids daily to make moving about easier. It’s helped tremendously. My physical therapist says I’ve made great progress over the past month. Here’s to hoping that continues!

I have an appointment mid-month with my orthopedic oncologist to see if he can help with eliminating the hip pain. More on that later.

My CA 27-29 tumor marker is a way we monitor for progression. I get tested via blood that gets sent to the Mayo Clinic in Minnesota, every three weeks when I have my treatment. My numbers are still hovering around 100 which is not great but I’ll take it. If it is below 38 then the cancer is quiet and not active. I’m still doing wonderful overall though so I’m not too disappointed.

I’m still working full time with a very flexible schedule. My remote work makes for lonely days but a few wonderful friends make time to come by for tea or lunch which makes a big difference. Later in the summer we’ll do some traveling as a family. This month will be fun at home.

April 2024 Update 🌷

April 14, 2024. Hi everyone – just a quick update on things here in cancerland.

This past week I had a PET scan and an infusion of Enhertu (chemotherapy). Both went smoothly, no problems at all. I’ve not seen the PET scan report, but I received a voice mail from my oncologist that things were “stable” meaning the cancer did not look like it was growing. The infusion treatment on Tuesday also went smoothly with no issues. My blood work and tumor marker continues to drop, indicating the medication is doing its job.

I am very grateful for all of this!

I continue to have mobility issues with my right hip. It’s not clear if it is cancer related or not. I’m on a lot of pain medication right now due to my lower back. Next week I’ll reach out to my oncologist and see if we can get an MRI so we have more detailed information.

The impaired mobility is significant. I cannot walk without assistance and my hip flexor is extremely tight. I’m trying to work in some upper body free weights and additional lower body stretching. I’ve not returned to doing outdoor walks, my stability is not great. I may look at longer walks on our home treadmill to get some endurance going.

I hope that signs of spring are apparent where you live. We’ve had some lovely weather here and I hope it continues!

You can follow me on Instagram at @nottodaymbc where I tend to post more daily cancer-related updates. I post to Facebook but not much health-related information. Of course I always welcome a text message or snail mail if you feel like getting in touch.

Enjoy whatever weather Mother Nature throws at you!

❄️ February 2024 Update ❤️

Hi everyone. It’s mid-February, time slipped away from me. The main message to you all is hello, I’m still here 🙂 working to get back to 100% and staying positive.

Last month I had 10 days of radiation (20 rounds total). The lumbar spine and S1 showed cancer growth and the recommendation was to zap it. They zapped it all right. That radiation took me out of commission for quite some time. The radiation was from my L1 down to my S1 and from both my front to back and back to front. Anyway, it was a lot of radiation and I did not do well with it.

Nancy came out for a week when Glen was traveling and drove me back and forth. I’m super grateful for that. She also helped with so much stuff around the house I can’t begin to thank her properly.

Evelyn & Keiron came home to make potstickers and visit with Aunt Nancy

The second week of radiation was hard. I became nauseous and could not keep anything down for over 24 hours. I got some extra IV fluids and switched my diet which helped some. I’m still not a fan of eating right now. The further I get from the radiation the better I’m feeling.

I turned right around from the radiation to start IV chemo. I have a new medication now (previously I was taking Xeloda oral pills). This will be every 3 weeks and an infusion so I have to go in to the cancer center.

The new medication is called Enhertu (Trastuzumab deruxtecan). The type of medication I get is based on my cancer sub-type. It turns out that this medication was just approved for my sub-type in summer 2022. Read that again. Prior to summer 2022 this medication would not have been an option. This is why research for new treatments is so critically important. Since I have been diagnosed there are at least 3 new medications approved to treat metastatic breast cancer. Please continue to spread the word about the importance of research for MBC.

Dance competition season has begun and Glen was taking Maddy to Colorado Springs for the weekend for dance. We felt like it would not be a good idea to have me stay home alone after this infusion. Ann came out and took me to my first infusion and then stayed through the weekend. Fortunately, I did not have much in the way of side effects – just fatigue. So, Ann and I had a lovely visit. She also helped with finishing up some errands and doing some shopping. We are grateful for her taking the time to come (even if all we did was work and sleep!).

Ann came with me to my first IV chemo infusion

So, today I’m feeling “ok”. I don’t have to take any medication regularly. I do have a fentanyl patch for pain. I’m mainly trying to get my right hip back in shape. The good news there is that both my physical therapist and acupuncturist think the problem is a very tight hip flexor (not cancer). If that really is the case then hopefully I’ll be walking better soon.

I’m super appreciative of my neighbors who have driven me to appointments, ran to the pharmacy for prescription pick ups, brought food or coffee, and sent cards. It all means a lot to me and my family. We appreciate you.

Tomorrow I’ll be watching the big game 🏈 (hopefully feeling well enough to attend a watch party). Of course my beloved Packers are not in the running, the commercials should at least be entertaining.

Be well, be kind and get out there and move as best you can. Sending love to you all in this Valentine’s month and beyond.

Onward!

☀️ More Radiation ☢️

Happy New Year!

I hope the new year is treating you well. We were fortunate to be able to spend time with family in Wisconsin and then Rob, Paul and Cara came out to do some skiing over New Years. Escaping to the mountains and Winter Park is always a good time!

It’s been sunny here – pretty typical for Colorado. I love the sun so I celebrated the winter solstice and the increase of solar radiation 🌞. I’m very happy the sunset continues to move later and later into the evening.

While I welcome more radiation from the Sun, I’m less thrilled with the fact that I will need to have some medical radiation ☢️. New pain developed in my left hip and leg a few days after Christmas. After an MRI and appointment with my neurosurgeon, we’ve confirmed the pain is real and related to progression of the cancer.

It looks like the L4 and L5 vertebrae are growing more tumor. Recall in October I had surgery to remove tumor on my L4 and L5 that was pinching my spinal cord. It’s grown back. It also looks like my S1 vertebrae (sacrum, just below the lumbar region) has notable progression. This is new cancer activity. Clearly the cancer is active and has grown back over the past 2 months.

I stopped taking Ibrance in September, I continued to receive Fulvestrant shots through early November. I started taking Xeloda (oral chemotherapy) in December. I continue to take Xeloda.

So, the cancer is active and we need to figure out how to stop it. The best path forward is to stay on my medicine so it has the opportunity to get the cancer under control.

Surgery would require me to stop my cancer medication. That’s not a great option because this would allow the cancer to continue to grow. My medical team has told me radiation is the best option.

At this point I’m waiting for the cancer center to call me to set up the appointments. I will have an initial appointment where they plan out what they are going to do and then I will go to the cancer center daily for the radiation treatment.

I’m grateful I have an option other than surgery and I’m looking forward to working with the radiation team to get started. In the meantime I’ll be working as I can and aiming to keep moving. My physical therapist has given me many good exercises and I’ve ordered some walking poles specifically designed for recovery. The poles should arrive this coming week and I’ll be getting outside as soon as I can with them. (Neighbors, if you see me, come on out and join me – I’d love the company.)

I hope that you all are having a great month and are doing all the things that make you happy and that are good for you.

Onward!

Drive up to Winter Park. Rob drove and the 17 yr olds rode with us

Farewell 2023

This is likely my last post for the year, and what a year it has been!

December has been eventful, not necessarily in the way I’d hoped. I started my new treatment medication. It’s an oral medication taken twice a day (Xeloda). The initial regimen was 14 days taking meds and then 7 days off. Long story short, I had terrible side effects. I don’t recall the last time I felt that sick.

In these cases the first thing to do is to reach out to the medical team and let them know so they can help. We decided to change the schedule so I take the meds 7 days and then have 7 days off. Hopefully this will lessen the side effects. If it does not, the next option is to lower the dose.

My medical team is wonderful in many ways, I’ve mentioned this before. Most recently they agreed that it was not a problem to pause the medication until January 1 so that I can spend time over the holidays without the risk of getting really sick. I very much appreciate that!

We will travel to Wisconsin to spend time with family and we will visit a few friends. There is never enough time to see everyone.

A few days after Thanksgiving my dad passed away. His memorial service will be on December 27. We will head back home to Colorado after that. My dad wanted any remembrance of him to be in the form of donations to METAvivor (the only organization that uses 100% of money raised to support research for metastatic breast cancer). If you are so inclined, you can make a donation in his honor by going to METAvivor.org, select ‘donate’ from the upper right. When you fill out the form you can check the box to dedicate the donation to the memory of someone. If you prefer to send a check, there is an address at the bottom of the page.

Wishing you all a calm and peaceful end to 2023. I hope that in 2024 you find and make your own happiness. Be kind to one another and live life each and every day.

Onward!

In case you thought Colorado winters were cold, not on your average day!

December 2023 Update

It’s December – a month I love because of all the holiday decorations, music, and it feels like most people are in a cheerful mood.

I’ve been home from rehab a bit over a week. My pain is not too bad, minimal due to the pain meds; my right hip is still cranky and giving me a hard time. I walk with the cane around 75% of the time.

I had 2 medical appointments last week.

The neurosurgeon took my stitches out, said I’m healing really well. I need to wear the brace for another 3 weeks.

The oncologist said I can start my new treatment so I started those meds on Friday, December 1. It is an oral chemotherapy (Xeloda). I take 3 capsules in the morning and 3 in the evening after meals. So far no notable side effects, but frankly it’s probably too early to tell.

It’s been hard to arrange follow up physical therapy. I can’t drive so need someone to come to the house. My first session will be next Friday.

Maddy had her annual holiday dance recital (photo is courtesy of the dance studio’s social media). It was great to get out and see her dance. It was a stressful evening though for me and uncomfortable to sit for so long. My recovery on Saturday was rough. I’m glad I went though – she and her friends are amazing dancers and I love to watch her do what she loves.

Maddy is in the back left, although challenging to find. This is the entire dance company and students taking recreational dance classes.

I transitioned back to work last Monday. I’m working a few hours and then taking a break. It’s a desk/computer job so I can work from anywhere in the house that is most comfortable. I enjoy work because it gives me something else to think about.

I’m a “let’s get those holiday decorations up the day after Thanksgiving” kind of gal. Glen is a hard-core “no holiday decorations until 12/1.” So, given that I can’t do much, he put some decorations up yesterday. One of the best parts is our favorite coffee mugs come out.

This month I’ll continue to work and recover. Glen has a few work trips coming up so I’ll rely on Maddy and my lovely support network for any groceries and things I might need (it’s tough not to be independent). Holiday shopping online this year (bleh) will happen. I’ll try to catch up with a few MBC friends and head back to the oncologist and surgeon in a few weeks.

Get out there and support your local stores and shops (counter-act all my Amazon buying) and enjoy the holidays, whichever you celebrate.

Onward!

No place like home

There’s no place like home for the holidays 🎶.

I am very happy that I will be going home tomorrow (Wednesday 11/22) and can spend the Thanksgiving holiday with Glen, Evelyn and Maddy.

The other thing I am happy about is this morning (Tuesday) they cleared me to be “independent” which means I can get up and move about the room, use the restroom on my on and so on. No more calling the nurses for everything.

I’ll have spent a week in rehab when all is said and done. Was it a good choice to come here? Probably. The way the assessments run, the day of the week I arrived, and other factors meant that I probably was here a few more days than I needed to be but it’s fine.

I will continue to walk with the support of a cane. I have to wear a “CTO” brace. It’s a cervical brace that stabilizes my neck and connects all the way down to a belt. Not gonna lie, not very comfortable. I can take it off if I am lying down or inclined less than 45 degrees. I am not sure how long I have to wear the brace, likely up to 6 weeks post-surgery.

I don’t have much pain, partially because I am still on narcotics (oxycodone). There is minor discomfort in my upper back between my shoulder blades where they did the surgery.

The fabulous news though is that all the previous pain I had is gone so the surgery did indeed relieve the pressure on my spinal cord. I no longer have any numbness in my torso or legs.

So, hopefully this surgery and the one last month on my lower back have taken care of any pesky tumors. I just need to get my strength back up.

Next week I will meet with my oncologist and pending clearance from the surgeon and how my bloodwork looks, I may start my next line of treatment. The surgeon and oncologist will consult to determine if I’m strong enough to start the meds. I had major surgery and they want to make sure I’m strong enough to handle a new drug. The medication is an oral chemo called Xeloda (“Za-low-da”) (Capecitabine).

Overall, I’m looking forward to going home, a bit anxious about the next line of treatment, and will need to figure out a plan to return to work. My company has been absolutely fabulous. I basically called my boss the day I needed to go to the ER and told her the situation, she said “we’ve got you covered, go take care of yourself”.

It will be the four of us for the holiday. Making some food, watching some football, maybe working on a puzzle. I’ll be pushing for getting some Christmas decorations out, not sure how successful I’ll be.

I hope you all have a lovely, long weekend whatever you decide to do.

Onward! New meds and surgery

Lots going on here so I’ll try to summarize for those trying to keep up.

Surgery. I still have continual pain in my lower back, right hip and leg. It’s debilitating and very frustrating to deal with and try to control. An MRI of my lower back shows that I have tumor pushing on my spinal cord. It’s not clear if this tumor is “new” or “old”.

The surgeon (neuro-oncologist) is recommending a laminectomy and tumor “rescission”. He will go in and remove part of 2 of my vertebrae as well as any cancer tumors he sees there. He is very confident this will eliminate my pain (🤞). Note: I find surgeons to be over confident in general.

Surgery is scheduled for Wednesday October 4. I will stay one night in the hospital. I should be up and walking about the same day.

New Meds. The results of my PET scan show the cancer is still limited to my bones (no visceral organs). This is very good! It also looks as though I have been having very slow progression over the past year.

My oncologist wants to stay ahead of the cancer (me too!) and recommends switching medication. I have already stopped taking Ibrance and in late October I will switch to Xeloda (z-low-da). These oral meds are taken twice a day for two weeks and then a week off.

I had a great run with Ibrance – over 4 years and 50+ medication cycles!

I know several other women on Xeloda so there is a support network to plug in to. I’m hoping my side effects are minimal and that my cancer hates this medication!

I will keep taking Xeloda until it stops working. This is determined by doing scans and comparing them to previous scans.

Today I will see my primary care physician to have him sign off that I’m healthy enough to have surgery. Then I’ll be calling my insurance company to see where approval for the surgery is.

Other than all of this, it’s a typical fall day here in Colorado with leaves starting to turn, lots of sunshine, and a high in the mid-80s. I’m looking forward to getting my back/hip/leg in order so I can go out and walk again. Take a walk for me – short or long – and send me a photo.

Bye bye Ibrance. You served me well, I’m still disappointed that you failed me. Do better, medicine!

MBC – the “gift” that keeps on giving

Happy September friends and family.

I feel like I missed summer so I’m being intentional about eating lunch outside in the sun! I hope you are still getting outside now and again to get some fresh air and vitamin D.

This past week was a busy one medical-wise. I had my regular monthly appointments. Additionally I had an MRI on my lumbar spine region (lower back) and met with a neuro-oncologist.

My medical oncologist is lowering the dose of one of my medications (Ibrance). There are 3 dose levels. I’ve been on this highest dose for 4 years. Apparently after being on it for that long it is common for white blood cells to start to tank (neutrophils specifically). So, I will go to the next lower dosage. It should not affect the efficacy of the treatment.

It’s interesting that the default is to start patients on the highest tolerable dose of a drug and then lower the dosage when there are side effects or complications. There is a group of patient advocates that are trying to change this so doctors don’t default to the highest dose to start.

Anyway, this change should not affect my treatment. The change will happen next month.

The neuro-oncologist believes he has found the source of my nerve pain. It appears that I have tumor on both the L3 and L4 vertebrae. The tumors are on the inside of the vertebrae and pushing on the spinal cord. That is what is generating the nerve pain in my hip and leg.

His recommendation (which I will follow) is that he do surgery to remove the tumor material. It’s not scheduled yet, hopefully will happen within 2-3 weeks.

We don’t know if the tumors are new or if they are “old” and just got pushed/moved around. The first step will be to get me out of constant pain. The second will be for my oncologist to determine if the cancer has awakened or is still sleeping. I won’t have that information until early October.

With Metastatic Breast Cancer (MBC) the cancer spreads beyond the breast. I have bone only disease. This is good in that bone only disease does not kill you. However, it can mess you up royally. The cancer in my spine has now made it very difficult to walk. The current nerve pain only allows me to lay and sleep on my left side. It’s possible though that the bone disease can cause incontinence and other very unpleasant things. So, when I say “Things could be worse.” They could, indeed.

Maddy has started her junior year of HS and a new year of dance. Evelyn is moved in to her apartment and in the thick of classes as a sophomore at University of Colorado Boulder. (She is VERY excited for the football game tomorrow! Look for her on tv.) Glen finished his fly fishing trip and will be traveling for work next week.

I have work travel scheduled (which will likely be cancelled). I also am/was planning to go to a breast cancer symposium in Pittsburgh, attending as a patient advocate. We will see how all this travel shakes out with impending surgery. I don’t have a great feeling about this travel happening either.

This back surgery is a bump in the road. One thing at a time. Thanks to everyone for your support and love. Right back at ‘ cha!

We take our spine for granted! Stop doing that!

No Different Information

Here we are again. Another month has passed and I’m posting. I thank you all for reading and for your interest. I hope you also learn a tad bit about this hideous disease and share with others.

But it seems like, yes, another month has passed and there is not much to update. In the grand scheme of life, not much has changed for me. (Side note, my recent scans were “fine” and I continue my current medications. Yay!)

Life is busy. There are things to do, places to go, people to see, and dreams to achieve. One day blends into the next with the punctuation of weekends when we can stand down a bit – unless you are retired. (My retired cousin says ‘everyday is Saturday.’)

Seriously, I feel odd sometimes writing these updates because to many of you, there is probably not a lot of new information.

When I first got this diagnosis it was terrifying to me, and also to my friends and family. Here I am 3 years and 8 months later – still alive, still working full-time, still traveling. Still living like many of you.

And yet. I live in 3 month increments. I have no idea if the table will turn and the next set of scans will be the ones that show the cancer has out smarted the medicine. Will this be the month I have to change my medication – and if I do, will it work? What kind of side effects will it have?

So far, I’ve only had to change medication once. That’s pretty f-ing amazing in almost 3.75 years. Hooray for science!

The internal anxiety I have is always present. I’m able to swallow it a lot because work is distracting. My friends allow me think of other things. Being with my family helps me live in the moment.

Today I met with my oncologist. There was a real possibility I would change meds. He said that with the data he has we should stay the course. So, no change in anything. Same meds.

We talked about what is next. I have two options for treatment (Xeloda or Taxol). When that stops working I’ll go to Enhertu. When that stops working I’ll go to whichever of the ones I didn’t chose (Xeloda or Taxol).

There is no cure for this, just treatment. The idea of changing treatment is terrifying – to be honest. Do I show that? No, because I don’t think about it a lot and there is not point in worrying about something out of my hands.

That doesn’t mean that everything is smooth sailing. It’s just not apparent. I have a lot to do, a lot of plans and a lot of new memories to make.

You have that as well. We just don’t often think about the time when we can’t do it, or when we run out of time.

We all run out of time, some of us just know we have less time that others. Very recently someone Glen and I know died from metastatic breast cancer. She and I communicated via email and she was really supportive when I was first diagnosed. She leaves behind a husband and 8 year old son. Her mortality is my mortality and the same for everyone else with this disease.

This being said, I have supreme confidence in science and am looking forward to annoying you all for many years to come with boring posts of non-information. 😃

This was the first outdoor walk, out of our neighborhood that I’ve done since October. My hip is finally starting to really heal.
View from Sandia Peak in Albuquerque. I was there for work.
Glen and I with cousin Dave and Jill. Fantastic (to short) visit. Explored the University. Colorado campus after brunch and before a hike.

~~~~~

Second line of treatment (since June 2022):

Fulvestrant (injection monthly)
Ibrance (oral daily)
Lupron (injection monthly)
Zometa (infusion quarterly)