Update on Xeloda

Since so many have privately messaged me, I guess I need to update you all. I am one and a half weeks into the Xeloda, and the fevers have disappeared, the bone pain has disappeared, and the visible cancer is clearly improving. All good news.

Xeloda has lots of its own side effects. One of them is extreme exhaustion. I have to be on guard for that hand-foot syndrome. But I have to say I am feeling better overall. It's remarkable.

That leaves me with a scary thought: what if the pain and fevers weren't the Kadcyla, but actually the cancer itself, just like I speculated in my Rubicon post? My NP even graciously hinted at that.

Did I just dodge a bullet? Believe me, I felt like I might be getting close to something. I spent days in bed. I certainly noticed my thoughts turning toward...other things. Even now, I wish I did have lots of energy, because I would like to take care of my "stuff." I have lots of junk, I need to get it in order. Or in the trash. It all just seems like stuff. I'd still rather have the energy to travel instead.

I know I need to feel grateful for the save, but at the same time, I'm just so surprised. That seemed to come out of the blue for me. I'm glad I'm better, but I guess I can't assume that I will be at any given moment. I aim to be here for years, but aims and reality aren't always in concert.

Despite how much I know, despite my own activist approach, I still feel like I'm being dragged along on this journey, kicking and screaming. I am no hero, believe me.

We did get a quick fall trip in,  which had its own adventure. We are planning some big changes for the holidays. I need to see my daughter. I need to be warmer. We're going to have to navigate how this all works out. More logistics. More back and forth, trying to figure doctors and medications. But I need to do these things. 

I'm also on my full disability now.  At least, I hope so; it hasn't all kicked in.  Slowly but surely, we are working on the new normal.

Have I thanked you for your love and support? I really should. Thank you. Love you all.

Visiting? Well...Maybe

My dear old imaginary (so it's really not you) friend: 

I heard you wanted to come visit.  I love you. I'm so honored by your love for me.

Let's talk.

It's like Monopoly. You visit, I'm stuck.

Here's an awful truth: I might not want you to come. I know that's a hard truth to swallow. And it isn't universally true. But consider this:

When we last got together, I felt a little impaired, and you could see it, for sure. I might have been a little tired, but generally, I was slogging through. I ate most of a meal. I had some energy to do things with the occasional nap. I would go out to dinner, maybe have a glass of wine or a cocktail. I could manage most of my life. I could travel maybe a little, walk a bit, slowly. I could drive and do things.

Things have changed. A lot.
For the last several weeks, I no longer felt well at all.  I had a hugely bad reaction to my last round of treatments. Maybe the cancer is taking over. I don't know why, but I'm much sicker.

Some days, I never left bed except to head down to the couch. I am often in pain from head to toe, spiking fevers randomly. My new big social event each day might be a doctor visit.

You don't know this, and I'm fine with you mostly not knowing, but I can't promise I'll be in shape to receive you when you come.

I have nearly zero energy. 
Walking up the stairs makes me exhausted. I'm not going anywhere, except the occasional RV trip. I avoid crowds, I can't drink anymore, and I'm not eating. I miss dancing so very much. Crowds tend to make me ill. Bars are out. Hubby does the grocery shopping. It's a remarkable day when I can do it. I'm not driving much! In the RV and the car, hubby is driving most of the time, and I'll be honest: our last RV trip was kind of awful for me. This saddens me beyond what I can tell you. Some days, I take four naps just to drag myself through the day.

I like my house clean for guests.
That's why I never sent that invite for a barbecue. Not only am I not eating, but my energy to clean the floors, the bathrooms, put things away - it's missing entirely some days. 

You need to understand: having you come visit will compel me to try. You can tell me "it doesn't matter" all you want: it matters to me. It humiliates me. It is another reminder that this is something I can no longer do: be a good hostess. Your visit is a reminder of my loss. Having someone care and clean for me: even worse. 

I have lots of embarrassing moments.
Last night, I felt well enough to go out to a restaurant. Silly me! I had to run to the bathroom where I fell into the worst coughing fit, apparently a side effect of my new meds. My new chemo has lots of other embarrassing side effects and fatigue that will make me wary of visits.

There are a few things I'll make an extra effort for: life events, our daughter...big things. But I'll be bringing the RV, so that I can manage my awful symptoms in private. Get it?

This is my new so-called life.

I am grateful for your love.

Look, I know you love me. There are several sadists that were in my life. They have left me altogether, unable to face my diagnosis, perhaps, and definitely unable to overcome their own feeling of failure, for which they strangely blame me yet for sins I never committed, as far as I can tell.  It's bizarre, but I can let that and them go, because they show me who they are and are not. Please know I am grateful for you. I appreciate all of your good intentions and it is comforting to know you're always going to be there emotionally, if not physically. There are much bumpier seas ahead; please be prepared.

I would be remiss if I didn't say that some of you have been perfect masters at all this. Better than I would have been. Thank you!

Here are some tips that might help, inspired from Cancer.net:

1. Prepare yourself. You might be upset by what you see - and you'd be even more upset if I showed you my reality. Try to be with me, not your feelings, anger, resentment or restless energy.
2. Ask before visiting. Most of the time, I might say no, at least until and when I feel better.
3. Be flexible. Listen, I can't say if I'm suddenly going to have a bad day. Be ready to cancel.
4. Read my blog. Take a minute to find out how I'm doing. It will help you avoid saying things like "take up a hobby." 
5. Don't try to fix it. Do you know what HER/neu is? What oncotyping means? Did you even bone up on stage IV breast cancer? Then, why do you think you can fix this? The day is coming when there is no fix.
6. Don't undermine my decisions. Asking if I'm doing the right thing (or words to that effect) is the same mistake we moms make, asking our girls if that's what they are going to wear. Actually, I do not care if you do question me, but expect me to say less and less to you about the whole thing.
7. Be present. I won't want to see anyone for long anyway, so for a few hours, put away everything else, and I will too. That even means that restless energy you feel -- I found out what you did last time, and yes, it hurt my feelings. 
8. Deal with this honestly. I know you're not happy. How do you think I feel? Did you think I want to pretend everything is just fine? Tell me you're upset if you are…and be self-aware enough to know. 
9. Don't come if you're the least bit sick.  Or, I do have masks and gloves. I just shouldn't be the one to wear them.
10. Use Skype or Hangouts instead. They are pretty amazing, and works great for the daughter and us. I can visit for hours on Skype. Way less pressure. Just be advised that I might be in PJs.

Thank you, dear friend. Know my love for you is not less because of this. I just wanted you to know. 

Healthcare Update

I am on day 4 of my new medication: Xeloda. It is taken by pill, three pills twice daily.  It comes in a biohazard bag that makes me think my pee should glow in the dark, but so far...well, mixed.

Last night, I developed a random bronchiospasm (coughing fit) that made me run from the restaurant proper as fast as possible. (Coughing causes other embarrassments, like I'm a senior in a nursing home.)

I am as fatigued as ever, or possibly a bit worse. I nonetheless have serious sleep cycle impairment. I don't have restless legs, I have legs that are marching to Pretoria.

But early returns for the cancer visually look positive, so I may just have to suck it up somehow.  Another HUGE plus: I don't seem to be as painful and feverish. For the first time in months, I haven't taken Tylenol today. But I still may have meds on board from the bronchiospasm, so it's unclear.

Oh, and I finally have an appointment for a second opinion at MD Anderson. I called them because I feared what the reaction to Kadcyla was doing; they are studying something similar. And I'm in. Finally. Houston, I have a problem....

Reversing Polarity: From Positive to Negative

The HER2 results are in. 

As you may remember, the first biopsy did not have enough tissue to assay my HER2 status, but the second one surely did.  The dear doctor (I liked him quite a bit) took multiple samples from all of the areas, using carefully guided ultrasound. He did an amazing job. We joked that the lab was going to open the samples and exclaim “What is all this?” Nonetheless, they had enough this time, and the conclusion was clear:

I am not HER2 positive anymore. There was no HER2 response at all.

So, what does that mean? I'll explain: One of the most effective ways to target the cancer fight it to be able to target HER2.

Well, which is it? Negative.

HER2/neu is a protein on the surface of breast cells. (HER stands for Human Epidermal growth factor Receptor, not that you wanted to know.) In some breast cancers, it gets too active and promotes the cancer growth. Being able to target and kill HER2 positive cancer cells was a small revolution in breast cancer treatment. It is part of the recent improvement we’ve seen in breast cancer survival. The cells respond well to Herceptin, and some women are surviving DECADES because of the ability to kill these cells.

But, things can change. Positive to negative and back again — this can happen all the time, we are learning. It happened to me.

I know I was HER2 positive once, and the Herceptin/Perjeta/Navelbine worked for quite a while. In fact, I like to think that combo got all the HER2 positive cells. 

But then, it seemed to stop working. Why? Because I also had HER2 negative cancer AT THE SAME TIME. Now, it’s time to go after them. There are still several effective treatments for me. And studies and….lots more. I just wish we knew sooner.

I am ER (estrogen) positive, and strongly so. I am less PR (progesterone), really to the point of being negative. So what does this all mean?

• I am *not* in the HER2CLIMB study. Yes, I’m sad about that, too.
• As I mentioned before, knowledge is power. We now have a better idea what to use to address what seems to have been a losing battle. I’m starting Xeloda, a well-known oral chemo, on Tuesday.  I will now take pills to treat my cancer. No more infusions for a while!
• I will admit to some frustration, because I still suffer from Kadcyla syndrome (my new name for the fevers and aches) and it was wholly unnecessary. Kadcyla was completely useless. 

So, I have an appointment for a second opinion with….MD Anderson. I know, I’m shocked, too! I had been turned down but now I’m in. I had read that they are studying a similar syndrome as mine — one being experienced by many of the CAR T study participants. (CAR T therapy is revolutionary for leukemia and soft cell cancers. It actually cures. They hope to figure out how to make it work for solid tumors like mine someday.) 

But nothing is easy: There is a great, big tough side effect (Adverse Event, they call it) called “Cytokine Release Syndrome.” The symptoms are the same same same as mine. It seems that monoclonal antibody treatments (like Kadcyla) have some unexpected turns. Because all of this is so new, they are just learning now how to deal with it. When I read the article about MD Anderson’s work on the syndrome, I decided to try them one more time to share my experience. And, as our French tour guide would say: Voila! I’m in.

Meanwhile, I will have new regimens for the Xeloda. It’s known for some uncomfortable side effects, lots of them GI related. I will also have to avoid something called Hand/Foot Syndrome. Doesn’t this sound like a load of fun?

Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage.This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles.The redness, also known as palmar-plantar erythema, looks like sunburn.The areas affected can become dry and peel, with numbness or tingling developing.Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities. 

--October 15, 2017 http://chemocare.com/chemotherapy/side-effects/handfoot-syndrome.aspx

Oh, goody. Can’t wait. At least, I don’t have to do the dishes anymore! W00t!

Keeping it cool -- I may wish for this soon.

That brings me to my next post; one I will bring to you soon. We need to talk; I want to explain why I might not want to see you right now -- or, how to visit someone with cancer. 

As always, your targeted comments are most welcome.