Where Do We Go From Here?

I hardly know how to begin and end this post. 

I suppose I can update you on a brief sequence of events. 

In May I had throat surgery to repair a paralyzed vocal cord. There was a  mishap so I had to go on a very strong anti-biotic, which wreaked havoc on my body. I was throwing up and had bowel issues and all the while trying to swallow as my voice healed. Long story short, my voice is back but I physically have not ever been the same. 

Who's to say what caused what but the biggest issue now is that my liver is failing from the cancer. No, I cannot get a transplant or treat it anymore. I am no longer on any chemo or cancer medication because after exhausting the list of possibilities, nothing seems to be improving. I am still in close contact with my doctors at Sloan Kettering where I've gotten exceptional care. They've been managing my malignant ascites, edema, tremors, and all other cancer related issues. I am, however, primarily under home hospice care. I have nurses visit the house, they get my meds, supplies, etc. Everyone thus far has been very compassionate. 

Today I met with a non-denominational chaplain --I surprised myself--and had a lovely talk. It only occurred to be about a week ago that all of this is permanent. For instance, I recently got a catheter for the ascites and in my mind, once I healed from it, it would be over. But no, it's staying in me. It's drained three times a day by my devoted husband. Not only has my life changed, but his, too. He cares for all of my meds, food, speaking with doctors. He has a new full time job just for me. Instead of planning vacations, we are planning how to get around from pt a to b, will I have the energy, etc. and this makes me feel so anxious and scared. What else is to come that will be permanent? The Chaplain said I am mourning the way my life used to be. She is right. No more beach, dunks in the pool, even a bath. I hope together we can work on my finding a more peaceful place but at night when my thoughts run like crazy, I am not at peace. I am overwhelmed with thoughts of the future. 

I suppose this will be my first writing entry to this new chapter life. Please stay tuned for more and feel free to ask questions. 

Love, 

Elizabeth💓

Is 2020 Over Yet?

Hi, All, 

Hope everyone had a nice Thanksgiving even if it had to be celebrated from afar. Christmas was just yesterday and despite a day off from work, in true 2020 fashion, there was a water main break on our block (of the building I manage, not my home) which resulted in the basement being flooded with several inches of water. Thanks to the NYFD and building staff for cleaning up what we hope is the last mess of the year. Monday will be all about insurance claims. Aside from that, we watched "Ma Rainey's Black Bottom" starring Viola Davis and the late Chadwick Boseman who passed away this summer from a four year battle with colon cancer. If you're a fan of August Wilson plays and liked "Fences," you'll like this movie. If you're a blues fan, you too will like it, as Ma Rainey was known as the "Mother of Blues.

The Abraxane (chemo) and Letrozole (estrogen blocker) combination has been very tolerable with the exception of some occasional stomach issues and fatigue. With this treatment it's recommended that one ices her hands and feet 15 minutes prior, during, and after treatment to prevent finger and toe nails from getting crapped up. It's not pleasant but hardly a bother in the grand scheme of things. Plus the nurses are entertained by my wide sock collection. 

 

The treatments would go like this: Arrive at hospital to get blood drawn. At MSK they can get results in minutes and they will determine if my ANC, or, Absolute Neutrophil Count (estimate of body's ability to fight infection) is low. If too low, then can't get treated. Although I regularly fall on the low side of the scale, I've only been low enough to skip one treatment. But for this reason I have to really err on the side of caution during Covid. 

Following the blood test, if I'm treated in NYC, then I go see the doctor. If I'm treated in Basking Ridge, NJ, then there's no doctor visit. Next step is the treatment. The nurses apply the ice while the cocktail is made; it takes about 30 minutes. Then the IV is given and that takes about 30 minutes. Sandy drives me to the NJ treatments and sits patiently in the car as there are strict rules about visitors in hospitals. I usually pass the time listening to music or a podcast or sometimes I partake in a Zoom meeting. 

After several months of treatment, the blood reports were indicating that the tumor markers were steadily increasing. High levels do not always indicate the cancer is getting worse, but you definitely want to do a scan when you see this. So the PET scan scheduled for 12/31 got pushed to this past Tuesday. Unfortunately my insurance company idiotically refused the PET scan because, get this, it couldn't be justified. 😣😣 In lieu of that I got a bone scan and a CAT scan.

It was quite the day. First I went to one MSK building to get a radioactive dye injected; it needs at least two hours to travel through your system. Then I went to another building where I had the CAT scan with contrast done. Then I returned to the first building for the bone scan. First time I ever had one. It was broken up into three sections of the body. It went well with the exception of the first section--a large plate is lowered over your head, just a few inches from my nose. I made the mistake of opening my eyes and going into panic mode. The machine started rumbling and I envisioned myself getting caught in an earthquake thinking how would I escape, etc. I survived it but I did recommend to the tech that maybe people should be informed of this in advance. 

On Thursday the oncologist called us with results. The long and the short of it is, the large tumor on left lung did not decrease from this summer's additional radiation and the chemo, rather, it increased. There are a few new tumors on the liver. The good news is that there were no hot spots (tumors show as "hot" if they react to the dye) on the bone scan, which should indicate that my hip responded well to the radiation done this summer. This report was not yet seen by the bone radiologist, but what the breast oncologist believes to be true.

Sandy and I have great plans for New Year's Eve. We're going to MSK in Basking Ridge for chemotherapy! Not sure if the nurses will mind my swigging a bottle of  my favorite champs, Rose Veuve Cliquot while they give me an infusion. I will start a new drug called CMF , which is supposedly tolerable. It does cause hair thinning so I'll likely remain nearly bald for the next several months. 

Several people have asked if I will get the Covid vaccine. The answer currently is yes, when available. MSK at the moment has no objection to it; it was not tested on cancer patients per se, but it was tested on some immuno-compromised patients. 

Now for the good news...Sandy and I closed on our fabulous new house! We are in the midst of getting quotes for flooring, painting, electric, etc. and hope that work can be done by March so we can move in. It's quite exciting and we look forward to mask-free entertaining in 2021!  🙏 In addition to that, I continue with my Penn State Master Gardening course, which I cannot recommend more if you have a serious interest in gardening. By the way, did you know the "i" in Poinsettia is not silent?!

I wish everyone a year of love, joy, health, peace, prosperity, mask-free dining, less worry, chocolate, and anything else one's heart desires. 

Thanks for reading until the end!

See you in 2021,

eLIZabeth 👄

PS I forgot to mention that for no apparent reason I have a paralyzed vocal cord. My voice intermittently gets hoarse and I sound like Peter Brady. 🤷🏻‍♀️ 

Taxol Take 2

Hello One and All, 

Seeing as it's Breast Cancer Awareness Month, I thought I'd share the latest and greatest from New Hope and remind you to schedule your mammogram if you haven't already: 

Since my last post I did three sessions of radiation to my hip socket at Memorial Sloan Kettering (MSK) in Basking Ridge. (Not so flattering pic below.) The treatment itself did not cause any side effects. The greatest pain was caused by lying on the hard, blue mold made to fit my body (getting up from it was a bear and NOT graceful) and keeping my arms perfectly still when I have an impingement in both shoulders. No results yet as I have not had a scan since then (scan date TBD).  

This was in the parking lot when Sandy & I were leaving.
I took it as a good sign that someone's looking over me. :)

A few weeks ago I tried a new chemotherapy called Irinotecan. In a word, it SUCKED. I had only one treatment and it caused nausea, vomiting and diarrhea for the better part of two weeks as well as hair loss. Supposedly it's "well tolerated" with the exception of stomach issues but for some reason I did not respond well. At. All. Twice Sandy had to take me to MSK to get an IV due to dehydration. 

Miserable at MSK getting fluids.

Despite the awful side effects of this drug, I still consider myself lucky. This was only the second time since 2012 that I felt so ill from chemotherapy. Most of the others were pretty tolerable. 

Seeing as my hair started shedding after three weeks --I was shocked it could happen from one treatment--and knowing my next chemo would cause hair loss, I decided to chop it off. I must give a shout out to Thad at Salon Gratitude in New Hope, PA who so graciously and patiently cut my hair and didn't charge me. He brought me to tears. The first time I met Thad years ago was under similar circumstances. My hair was growing back awkwardly and he fixed a buzz cut gone awry that Sandy had attempted at my request. Salon Gratitude has also been donating its services to New Hope's annual Couture for A Cure (breast cancer survivor and thriver) fashion show that I participated in a few times (this year canceled due to Covid). The stylists did the hair of all of the models and made us feel and look special and fabulous. Thank you Thad and Salon Gratitude! 

Last Friday I had my first chemo session with Taxol. Taxol was the second chemo I tried back in 2013 and I benefited from it for several months. Since it's been so long that I've been on it and because it was pretty effective, the oncologists thought it would be ok to try it again; this is not an uncommon practice. The version of Taxol I am on is called Abraxane. Abraxane does not contain a preservative that's in regular Taxol and typically can cause worse side effects. They cannot always administer it because, guess what, it's more expensive and insurance balks at that. I got lucky and thus far with the exception of some mild stomach issues and nausea, I am feeling fine.

And now for some positive non-cancer related news... 

I started a Master Gardener program through Penn State Extension. Classes are held once a week on Zoom and end in March. In addition to the requisite 40 hours of course work, I have to put in 50 hours of volunteer time over the year. There are many ways to volunteer including assisting in the development of a local community garden. Because I have to limit my interaction with people I will likely focus on working on the newsletter and social media. If you are interested in becoming a master gardener, you should know that this program has been around since the 1970's and exists in all 50 states! I originally was just shopping around for a gardening or houseplant class and stumbled upon this amazing course. I will tell you that if you haven't studied in many years like me, studying botany ain't easy! But the volunteer teachers are so kind and helpful and are there to assist with anything.

Last, Sandy & I are in contract to purchase a fabulous house nine minutes from our current address in New Hope. We should close near year end and we are very excited about this development! The house sits on over two acres of land and has many tree species so I look forward to learning about them and sprucing up the landscaping with beautiful plant containers. The house is unusual in that it was shipped from Norway (the best house framers!). There happens to be an electric dog fence so, who knows, maybe there'll be an addition to our little family sometime soon. 

That's the news for now. It's time for me to study Plant Disease. Yup, you read that right.

Be well, keep washing your hands and don't forget to VOTE!! 

Love, 

LB

Fake News!

Hi, Everyone, 

I gave some incorrect information in my last post. 

The doctor apparently told me we should look into sacituzumab (Trodelvy) but when I spelled out what I thought he said phonetically and then Googled it, it led me to Trastuzumab (Herceptin). Herceptin is NOT in stage 3 trials for ER+ BC like I suggested below and I am NOT going on it. Sacituzumab aka Trodelvy is in stage 3 trials. The doctors are deciding if I will take that or Irinotecan. Whichever one I don't take now I'm sure I'll take down the pike. Following are links to both drugs, which supposedly are well tolerated.

https://www.cancer.gov/news-events/cancer-currents-blog/2020/fda-sacituzumab-govitecan-triple-negative-breast-cancer

https://www.cancernetwork.com/view/fda-accepts-2-new-supplemental-biologics-license-applications-for-pembrolizumab-in-tnbc

Scheduling for chemo will not occur until the radiation is complete. Monday I go for a mandatory Covid test followed by the Simulation (mapping for radiation). Radiation will take place 7-10 business days from Monday. 

Wash your hands. Wear a mask. Stay positive. 

Love, 

Elizabeth

It's Been Six Years...

It's been six years since I've posted on Twin Peeks. I had reached a point where I thought nothing was that interesting to share. 

In retrospect, however, I see I may have omitted some important information for other metastatic breast cancer patients who hopelessly search for information on the web. I was one of those people six months ago when I couldn't find any more than two people to "chat" with about their experience with a particular treatment.

So, what follows is a brief summary of my experienced since my last update in 2014. I may be leaving out information simply because I don't remember every detail of my treatment.

Around 2016 I felt so maxed out on chemotherapy. Not one doctor would acknowledge that my symptoms were chemo related. I had a new nagging cough that was so exhausting and at times brought me to tears. I was told I had acid reflux. I had severe stomach cramping, which would occur out of the blue or when I bent over to tie my shoe or just went to the bathroom. Test after test showed nothing, I was told maybe you're constipated. My sense of taste and smell was screwed up. To this day the smell of rubbing alcohol makes me gag. I was tired and for the first time kind of miserable.

Then I received a gift. I asked a contact who sat on the board of Memorial Sloan Kettering (https://www.mskcc.org/) he could tell me the easiest way to reach someone about the possibility of participating in a trial (to date, I still haven't qualified for any). The next day I was confirmed to meet the head of the Breast Cancer department (Take heed: Don't ask, don't get!), Dr. Jose Baselga.

Over a few weeks, it was confirmed that I had definitely gone through menopause (on chemo you might think you have when in fact you haven't) and through extensive gene testing provided by MSK I learned I had no odd gene mutations. This was checked because some mutations can show you're a candidate for a chemo drug that isn't specifically for breast cancer, but you still might respond well to it. It was concluded that I was primed for post-menopausal hormone therapy. I went on Ibrance (a pill, yay!!!) also known as Pablociclib, https://www.ibrance.com/ coupled with Letrozole (another pill, yay!!) and together these drugs gave me a great two year streak with no growth and little to no side effects. Research shows that two years is the average success rate with this cocktail and I was happy to fall into that group. I must mention that all of the symptoms mentioned in the paragraph prior went away after I got off IV chemo. So yes, it IS possible to what I call max out on chemotherapy and if you're doctors say it's not, don't believe them! You know your body best and sometimes, when possible, it just needs a rest!

In the middle of my Ibrance treatment, this sadly happened: 
https://www.propublica.org/article/astrazeneca-hires-dr-jose-baselga
I was stunned and devastated to lose Dr. Baselga especially given the circumstances. He and my Lenox oncologist, Dr. Keith Brunckhorst, were the perfect team for me! Who could fill the shoes of Dr. Baselga?

I was gratefully lead by him to Dr. Sarat Chandarlapaty who still sees me. https://www.mskcc.org/research-areas/labs/sarat-chandarlapaty

After Ibrance, I was put on Fulfestrant, two HUGE shots given in your hip that caused pain, soreness, and numbing for months even after treatment ceased. This drug, more commonly known as  Faslodex  http://chemocare.com/chemotherapy/drug-info/faslodex.aspx bought me a few months. I was then put on a combo of Afinitor https://www.us.afinitor.com/ and an aromatase inhibitor, Examestane and I have no recollection of side effects. https://www.webmd.com/drugs/2/drug-17764/exemestane-oral/details 

Fast forward to April 2019, a scan showed the lung tumors were growing and the cancer metastasized to my liver. It was too soon then to treat the liver with anything outside of using drugs so we decided to just watch it. But we decided, under the care of Dr. Jillian Tsai   https://www.mskcc.org/cancer-care/doctors/c-tsai to do three sessions of radiation to the two largest lung tumors on the left and ride sides. Results were decent with some reduction in size of the lung tumors, but the liver tumors continued to spread.

In February and March of 2020, MSK's interventional radiologist, Dr. Amy Deipolyi, performed Y-90 radiation, a very targeted treatment administered on an out-patient basis while under sedation, through the groin, first to the right then the left lobe of the liver. It was this treatment that lead me to scouring the internet for other people's experiences and eventually writing this post. I had no way to predict for how long I'd be bed-ridden from the side effects that were like none I've ever experienced. https://www.radiologyinfo.org/en/info.cfm?pg=radioembol
There was a lot of nausea the first round but worse, strange, indescribable pain around the abdominal area as a result of the blood supply being cut off to the tumors. I found only two people on Facebook groups that shared they had similar experiences and convinced me the pain would dissipate within about six weeks, which it did. I had much less pain on the left side in March.

Prior to being approved for the Y-90, United Healthcare rejected it three times. They suggested I try a systemic treatment, WHICH I'D BEEN ON SINCE 2012. They said because the liver wasn't my first metastases (the lungs were) it wouldn't work. They said there were less expensive and experimental options out there. It was INFURIATING. Dr. Deipolyi, however, armed with her success stories, persisted and after three appeals re-submitted the request at the beginning of the year and it was approved. Was it a new person reviewing the case or just a new annual budget that got me approved, we'll never know. I urge anyone whose treatments are rejected to PERSIST. Kick and scream. Out the insurance company on social media. Call the pharmaceutical companies. I did all of this. Remember, insurance companies are businesses and like all businesses, they want to make money and they do not have your health in their best interests.

The scan in May following the Y-90 treatment showed excellent results on the right side of the liver--there was little to no activity. The left side didn't fare as well but we thought it had been too soon to make any conclusions. There also was still one pesky lung tumor that was resisting the April 2019 radiation so we proceeded with two double-shot radiation treatments to that one tumor: two days in a row of twice daily radiation. 

A follow up PET scan was done a week ago. It showed that the right side of the liver remained stable with the exception of just a couple of tiny new tumors. Unfortunately, for the most part the left side rejected the treatment and there are a couple of new tumors. There's no explanation for this and Dr. Deipolyi was SHOCKED that one side would respond so drastically different from the other. One reason given is possibly I've been on so many treatments, that the cells aren't kicking butt like they once might have. Lastly, an area on my hip that we've been monitoring closely has been confirmed as cancer. This would be my first, hopefully my last, bone metastasis. 

Next steps: Dr. Tsai is very confident that with three radiation treatments, the tumor in the hip socket can be destroyed. This week I will find out when I will be treated. While this is happening, Dr. Brunckhorst, at the recommendation of Dr. Chandarlapady, is going to see if he can get me approved for "off-label use" of a chemo called Herceptin.  https://www.herceptin.com/  Herceptin has been associated with successfully treating HER2+ BC patients, which I am not. But they are in phase III trials for treating hormone receptive positive breast cancer patients like myself and the median success rate has thus far been eight months. Sounds good to me!

During the pandemic I've been fortunate enough to be able to work from home, which I've been doing in our house in PA since March following the second Y-90 treatment. I do not miss the rat race in NYC and I'm much happier and presumably healthier--mentally anyway--with a garden, fresh air, daily 3-4 mile walks and no Covid crowds to worry about. Yes, I may've jumped ship and abandoned my city to live in a bubble, but I've done so guilt-free. And for anyone reading this who ever said to me, You cannot or will not ever leave NY, you're a true New Yorker, and you'll just be bored, I'm happy to report you were wrong. :)

I plan to provide an update when new results are in. In the meantime, please feel free to ask questions, provide feedback or share this post with anyone who is continually on or looking for new treatments and wants to share their experiences.

Peace. Love. Thanks for reading.

LB

Port One, Gemzar 2

Makes me think of the Rain Man. To be said while rocking back and forth: Port One. Gemzar Two. Port One Gemzar Two. Charlie Babbitt made a joke. K-Mart Sucks... I survived my first treatment using the port on Monday. I didn't think it could be done given I still have on bandages but the nurse was able to access Port Authority. She put on a local anesthetic cream called Emla. Great, something else that comes with a warning label. Anyway, it helped to numb the area very quickly. I must say, although I was entirely freaked out by poking a device installed under my skin, it made the treatment go much smoother. We saved at least 15 minutes trying to find a cooperative vein. So that's the good news. 

The not great but bearable news is that I feel like shit from the treatment. I was fine on Monday though extremely tired and irritable to the point of tears. I haven't been sleeping, hence my writing this at 4:00 in the morning. Yesterday I had aches and pains, chills, nausea, and no fever. I was teetering on throwing up every couple of hours but thankfully didn't. I cannot say I'm feeling to great now. This is a typical side effect of the chemo that strangely I didn't experience the first time I had it. Took a bunch of Tylenol Extra Strength, which I'm going to stock up on. By the way, what are you thoughts on the actual name brand vs. say, Walgreens?

Meanwhile, my hair is growing in dark and somewhat thick--still some thinning spots in the back. My insane hairline is back, cowlicks, baby hairs and all. Here's an interesting fact: The word cowlick originates from the domestic bovine's habit of licking its young, which results in a swirling pattern in the hair. I did not know that until I looked up the correct spelling. 

I'm incredibly antsy lying in bed and the bright light of the computer isn't helping. Time to turn on some NPR and attempt to catch more Zzz's...

Thanks again for everyone's supPORT this week. Oh, by the way, my friend Maury came up with a new name: Port CHESTER. How did I not think of that? Good on ya, Maury!

Love to all, 

LB

Greetings from Port Authority

Hi ya'll... rePORTing back to you to advise that the procedure went OK. Mom and Sandy accompanied me to Lenox Hill. After filling out several forms and a lot of waiting time I was brought into the cold operating room where I was introduced to the staff. I must say one nurse was nicer than the other, the surgeon, or rather, radiology interventionist, did his best to comfort me and I always felt as if I were in good hands. My only question is why are shoes without booties permitted in the operating room? I had to wear a mask during my procedure just so I wouldn't breathe on myself to avoid risk of infection. Everything else is super sterile, but you can wear your shoes and I even did so while I was lying on the table (I only had to undress from waist up). 

The actual procedure started at 11:45AM but I wasn't brought into recovery until about 2PM. I was super groggy, eventually got to eat a sandwich and drink some apple juice and after an hour or two I got to go home. The area hurts or is rather sore but it's not bad enough that I need hard core pain killers. It's black and blue and has medical strips on it that will fall off within seven to ten days; I can only sponge bath for four days. I took off the big bandage this afternoon.

My new device was aptly named Port Authority by my friend Hillary; first because I'm a New Yorker and second because I still have authority over my life! I really couldn't attempt to read about Port Authority until I came home yesterday and checked out the brochure. Here's the most basic information about it:

http://lookingforcure.org/index.php?option=com_content&view=article&id=103:use-of-port-a-cath&catid=42:chemotherapy&Itemid=55

I have to carry a little card with me to give to nurses any time it's utilized or if it sets off the alarms at the airport. Just think, I may be the reason you miss a flight one day because I held up security. 

Thanks for everyone's supPORT.

Have a wonderful Mother's Day!

Love, 

The Boob Blogger