My Second Opinion: Three Hours of Disappointment

One of the hundreds of signs near
the many buildings on this campus.

I was warned. I just didn’t believe. I had to think that a research hospital that is studying the very symptoms I had been dealing with would be able to offer some insight and a treatment plan. Maybe this advanced hospital might have an upcoming trial – one hears about so many of them. It seemed so right when I arranged my visit.

MD Anderson disappointed me.

I was inspired to call because they are studying a monoclonal antibody reaction to new treatments – the very problem I was having. I had a list of questions to answer.  I gathered all the information that I could gather, and they arranged for the rest. My coordinator told me that I should reserve three to five days. I used all of my hotel points to reserve a five day stay at a hotel near the massive medical complex that is MD Anderson. She told me that they would complete my schedule after I met with my second opinion oncologist.

I was done in three hours. I met with a fellow, a social worker and the oncologist.  That’s it. I am welcome to call if I need. I will lose all of my points, having to check out early.

The fellow did well enough, taking our history and working his way through our questions. He and the doctor both examined my history and my situation carefully enough. The doctor questioned whether I should be on additional hormone sensitive treatments like Letrozole or Ibrance. He’s going to suggest we substitute Zometa for xGeva, because he is sure that my incredible debilitation for months was just that and nothing more: a reaction to the xGeva.  But overall, he didn’t seem very inspired to shake the tree and seek additional treatment. I heard nothing cutting edge, no advanced thinking. I can carry on, because apparently I'm just an average Stage IV patient.

The Xeloda seems to be working, and although it’s tricky to manage, I seem to be making progress. Unfortunately, I also have new skin mets appearing, then disappearing as the Xeloda attacks. My wound is still open. So, he is concerned. But he’s not interested in treating me, there are no trials that make sense, and he doesn’t think radiation is a good idea. (Tough -- I think it makes way more sense than this constant creeper battle.)

What chapped me further was his dismissive attitude. I explained to him that I am study- and data-driven, but despite my explanations about the studies, he still thinks there is no connection to thyroid meds. He mocked my diagnosis of “radiation asthma.” (You know, the problem that everyone on this thread complains about.)

He committed the greatest sin of all, as far as I am concerned as a patient: he was patronizing.  I think you know me well enough by now to know that doesn’t fly with me, ever.

When we were done, I realized I’ve been given a gift. I’ve had confirmation that the path I’m on now is fine, that MD Anderson is not as prepared to be cutting edge as they claim, and that I need not worry about the quality of my care. Clearly, I’m doing as well as I can expect.

My next CT scan will be in December. I’ll update you all.

Dr. T, thanks for being my partner, not Dr. God.
.

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.

Has My Cancer Crossed the Rubicon?

Years ago, I worked at a burgeoning sole proprietorship where the owner loved to kick off the week with his staff. Every Monday morning, bright and early, we’d gather in the biggest room in the biggest building to let him wax philosophic on the world, economics, libertarianism and our work, usually in that order. He was well-read and fiercely opinionated. One morning, in anticipation of a lecture on economics, he began with a question:

By Jacob Abbott [Public domain],
via Wikimedia Commons
https://commons.wikimedia.org/wiki/
File%3ACrossing_the_Rubicon.jpg

Can anyone tell me what “Crossing the Rubicon” means?

As usual, mine was about the only hand that shot up. I have been like that since I was a child; I had a sharp memory and retain some pretty strange stuff. "Crossing the Rubicon" is a reference to a river in northern Italy. It was the outer boundary of the Roman military dominance in 49 BCE; Julius soon-to-be Caesar had been forbidden to cross. If he crossed, he began a civil war.

Julius had other ambitions. He crossed and said “the die is cast.” Today, “Crossing the Rubicon" means making an irrevocable decision, or crossing a point of no return. 

Crossing My Rubicon

About a week ago, I awoke in a tremendous, new pain. This was not the bone pain/fever combination I had been fighting. This was something else entirely. It was 11 on the 10 scale of pain. I was on fire in my hips, up and down my spine, my head, everywhere I’d ever had arthritis, everywhere. Or so it felt. Over the counter remedies barely touched it. After trying to manage for a day and a drugged night with little relief, I got whiny and plead-y with my doctor’s office. They scrambled to find someone capable who would see me on a Friday afternoon. (One does not simply come in to see the Oncologist in this practice; they all have too many patients and not nearly enough time.)

They found someone awesome. I dragged my stiff rear into a different office, and the PA took a long look. An hour long, to be exact. She listened carefully to the symptoms, asked good, targeted questions, did her exam. She was reassuring (and correct) that I did not have mets fractures. This was too bilateral and diffuse -- it was widespread inflammation, possibly still the Kadcyla.

But then she reviewed my PET and my MRI. No brain mets, good news. But the number of sclerotic lesions in my bones is beyond concerning, at least to me. (Not to them: they call it minimal progression.) Even my skull has lesions, per the MRI. 

By the end of the hour long appointment, she told me that yes, it was possible that I have crossed the Rubicon: it is possible that my bones and the cancer are finally causing even this widespread pain. Or not. No one knows. But I walked out with my first ever Norco script…the one I’ll get refilled over and over from now on, most likely. That’s a Rubicon, too. I can count on one hand the times I've had Vicodin or Norco outside of the hospital. Even inside.

Xrays confirmed no fractures. And when I think about where these lesions are, I still think I'm dealing with Kadcyla. The problem is, I'm off. I’m done. I am well beyond the end of the cycle it and I should be getting better. I think am making progress, but it’s hard to be sure it will stay that way. I couldn’t get my flu shot because the fevers are still happening. Kadcyla seems to linger. But how long?

My biopsy is next week. I am reassured that they will do a more thorough job; the nurse read the notes to me: my doctor has requested several areas, not just the one tumor, and more sample, so the Human Epidermal Growth Receptor (HER2/neu) assay has enough tissue. This is a critical piece of information, and information is power. I will be in the trial if positive, and we'll do something else if negative. But no treatment until then. 

I will update when the updates come along. As always, I love your targeted comments. 

Reactions and Side Effects

My last round of Kadcyla hit almost immediately. I could feel the fever and the bone pain; taking a dexamethasone pill seemed a no-brainer, so I took one early in the morning the next day.

It wasn't long before I knew this one wasn't going well. I could feel the reaction come on, but I was helpless to do anything about it. I felt the welling of negative emotions; the shakiness of my hands and knees; the increase in heartrate and respiration. I knew what was going on; I was having a steroid reaction. I called hubby to come help. He did great, because he knows what to do. He held me and let me cry until the original sense of panic and mania subsided, and then took me for walk later to help smooth out the rough spots. Nonetheless, it would be three days before I slept more than two hours at a time, and I still don't feel well.

That's the downside of trying to treat the side effects of this chemo; steroids have awful side effects of their own, and I had one. I hadn't even taken a whole pill! Most of the time, once onboard, I feel great. This time, not so much. I am so grateful that this should be the last time I ever have to do this awful drug again. I'm moving on.

The Clinical Trial

I've applied for the HER2CLIMB trial.  This is a double-blind, Phase II study. That means that I'll receive certain standard of care treatments regardless -- some of which we might have tried anyway -- and there's a chance that I'll receive this new treatment as well.

The new treatment targets a part of the cell that signals growth, the Tyrosine Kinase enzyme. By interfering with the signal, it is hoped that the cancerous cell that has gotten the growth signal stuck "on" can't signal anymore. Earlier studies show optimism for about a third of the study participants.

To get into the study, I have to qualify. They are going to check everything from brain mets to tumor histologies again. Some of those are being scheduled now, including an EKG, another CT, lots of blood work and an MRI. I will be on another 21 day cycle, but there are many more pills involved. Herceptin is the only infusion -- everything else is a pill. I'll have to 1. stick around for treatment, and 2. travel farther to get it, both of which are also downsides.

The biggest concern that I have for this treatment is something called "hand-foot syndrome." Hand-foot syndrome causes redness, swelling, pain and blistering on the palms of the hands and/or the soles of the feet. This is common enough with one of the drugs -- the one I might have tried anyway. As near as I can tell, something about our hands and feet causes the chemo to sweat out and burn. My new caregiver assures me that I will be fine by following a specific care regimen-- she's ready to make sure of it. I'm finding that reassuring.

Thanks for Your Help...Ok, Really, No.

I sure do have lots of loving, helpful friends. And even though I have cautioned about offering unsolicited advice to cancer warriors, I've been inundated lately.

• One friend wants me to look into one therapy that they use for blood and lymph cancers. 
• Another wants me to call the a major clinic right now, because their new surgery/therapy combination is doing wonders for somebody they know. 
• Another has me heading to the medical marijuana clinic. (That's actually probably the most helpful right now and I am grateful for recommendations there. I think the state of medical marijuana is deplorable; I will welcome it into the fold of science-based medicine soon and divorced from the hokum we see now.)

Folks, I know you love me. You want me to "beat" this cancer. You want me to be cured.  I get that. Even though I have explained in detail what my situation really is, it went by you because you aren't the one living it. You don't know from solid vs blood tumors, you don't understand hormone status, Human Epidural Growth Receptor 2 status....everything that my doctor and I track in detail. I understand that I've written all of this in a way that's hard to absorb. So, you hear of people being cured and you want me to share the joy.

Here's the bad news: Cancer's a sneaky little bitch and it is different in all of us. All of these miracle cures and advances that you read about aren't necessarily going to apply to the people you know who have cancer.

• Some cancer makes solid, hard tumors, like mine. Others affect blood or lymph cells or make less palpable tumors. Treatments for each are wildly different.
• Stages of cancer determine whether you're getting surgery. I'm stage IV, metastatic. There's the same primary cancer in bones all over, in my skin and now God knows where else. That means no surgery because I'm basically riddled with cancer. What to do surgery on? Everything?
• The same goes for radiation, although I will consult my radiation oncologist just in case...but he's going to say "not unless you have pain." I don't have pain. 
• I have the extra joy of managing the other primary cancers, especially my thyroid cancer, and there is preliminary evidence that the treatment for it may be making my uphill climb impossible.

What may be worse is how strident some folks get with me when I resist their wisdom. No, you can't pay for my cure. There isn't one. You can't help me find my miracle -- it's not out there. There's treatment, and I'm using my resources and a pretty keen ability to judge to decide my treatment plan. But the treatment plan will be rooted in the exhaustive research they've done to figure out what works for my particulars. 

Let me be clear: the person in whom I invest the greatest trust in judgement is me. I get everything the doctors are talking about, sometimes right down to the molecular level. My data gathering is clear eyed and thorough. I will make the best decisions based on a narrowing set of choices. My doctors and I -- we have what we need. I will reach out to more just to be sure on my own. You really can't help me. You can't save me. Only I and the doctors can do that, if it's possible at all. 

So back off.

And here's something I can't say enough: At Stage IV, I'm never going to beat this cancer. I will not be cured. I intend to tame it into a state we call NED: No Evidence of Disease. But I will never live another moment free of cancer treatment. I still may live for years, but I will always be Stage IV.

Update

Sadly, the TDM-1 failed on nearly every count. Skin mets are worse, tumors are worse, my bones are worse. The doctor is signing me up for a clinical trial next.  I will keep you updated.