I am writing this on Monday night; by the time email subscribers read this it will be Tuesday and I’ll be done with chemotherapy again, having risen before dawn to head down to New York’s Memorial Sloan-Kettering
First let me report the good things. I have had some great days after my transfusion last week for severe anemia (expected often now after this much chemo).
On Friday night I drove Colin in heavy traffic to his first travel baseball game (took two hours). Then I sat watching warmup and the game which was another 3.5 hours. Then an hour home. I am detailing that time to brag. Look what I did with my son.
It wasn’t physically easy for me. But it was joyous. We got so punchy in the traffic jam that we were waving our hands in the air “seat dancing” to the music. We nicknamed a car “Duck Dynasty” that was broken down by the side of the road and then got lost at the venue and ended up 4-wheeling over gravel hills. We had a blast. Here is my precious middle child when we arrived at the field. The team won which was exciting. It was his first game on a full-sized field and also under the lights. I also got to take him 
to another game on Sunday; the team lost that one but it didn’t much matter to me. I got to not only be there to cheer the boys on, but also bring them water and popsicles on a scorcher of a day on the field.
The medical update since the last post is that in short, there isn’t a good clinical trial that I qualify for/am willing to enroll in right now. The chemo regimen that I am on makes me ineligible for some because it affects my blood counts so severely each time now (quite a catch-22, I would need to go off chemo to even have a chance at being considered). One trial I can’t be considered for because there isn’t enough tissue left from a previous biopsy to use it for required testing. Because my cancer is primarily in bones or other places inaccessible by surgery, this is not an easy problem to fix.
Now I’m going to get a bit technical. I’m hoping to explain a bit about how the different clinical trial types work since many people don’t know these distinctions. Consider this your breast cancer education for the week! Yeah, you know I’m not a doctor so I’m explaining this to the best of my ability. Ask a doctor for more info, especially one who works in clinical trials to be sure the trials you or a loved one might be considering work the same way.
Here we go:
One type of Phase I clinical trial (which I would qualify for) is risky enough that this option isn’t reasonable to me right now. Let me clearly state that they may become very reasonable options at some point soon and I totally understand why other people choose to do them! These particular phase 1 trials I’m opting out of for the time being are the kind that are testing safety of a medication previously untested in humans. That is, they don’t yet even have a dose that they know is safe. They are called “dose escalation Phase I trials” which means they start with a low dose they think is safe and gradually increase the dose until the side effects become too bad and the test subjects can’t continue and they stop participating. They do these on a small number of people.
This process establishes the maximum tolerable dose and the company hopes to then proceed to a Phase II trial. That Phase II trial tests if that established maximum tolerable dose even does anything measurable (Phase II trials test for efficacy: is this drug keeping the cancer stable or even causing it to shrink?).
To complete the clinical trial trio, a Phase III trial tests the “current standard of care” plus the trial drug against the current standard of care alone. That is, does adding this drug to a treatment that is a normal one for this cancer improve outcomes above and beyond just giving the treatment the patient would normally get (are results better? The same? Worse?). For ethical reasons there are no placebos used alone instead of treatment in Phase III trials in metastatic breast cancer. They would be used only to combine with the standard of care treatment. No patient goes untreated. All get the usual treatment as the guarantee.
This process means that during the Phase I dose escalation trial I first mentioned 1) you don’t know if the trial drug is safe, 2) you don’t know if that dose is too low for some or all of that time to even be doing anything, even if it is eventually going to be efficacious, and/or 3) if it even works at any dose (without making things worse). This means continuing with your cancer potentially untreated for months, an often dangerous proposition in metastatic cancer.
I don’t want to go into more details of those trials but I do think it’s important for me to continue to explain the way that some clinical trials work with metastatic breast cancer.
As I think I mentioned in my last post, the likely immediate plan was to increase the dose of one or both of my current chemo drugs. Because I opted not to pursue enrolling in a clinical trial I will remain on IV chemo. If I had chosen the trial I would need an additional two weeks without any chemotherapy to complete the mandatory washout period where I do not use any medications to treat the cancer because their presence in my body could affect the trial drug results or side effects.
I am going in for an increased dose of Carboplatin and steady dose of Gemzar on Tuesday. I did have one increase already in the Spring on my Gemzar dose. We will see what kind of response we can get from this Carboplatin increase, if any. It will hopefully buy us some time until some other trials open up and/or we can consider if we can do a biopsy once we see a current CT scan.
A few readers were concerned that I was relying too heavily on tumor markers in my decision-making. In short, I’m not. I am well aware (as I’ve said in almost every post except last time) that markers, particularly CA 15-3, are not reliable for many people. This is why this test is not used as a screening test for people to find out if they have breast cancer. If it were valid they would use it instead of or in conjunction with routine mammograms.
I know many doctors don’t use blood tests for markers at all and for some types of breast cancer they are totally worthless. Trust me, oncologists at Sloan-Kettering are well aware of all of this information as am I. The most important piece of information is a history of them in me and how they correlate with scans and my disease progression. I am one of the people for whom they are tightly and reliably correlated with my disease. We have had seven years of studying them in my particular case and two years with close monitoring during metastatic disease. So while I definitely appreciate the concern, you can rest assured that we make decisions with all of this in mind. It was my error in not putting that usual caveat in that last post.
So… for now the plan is: higher dose of one of two chemo agents on Tuesday. Test markers to see what they’ve done in last few weeks.
In case you are curious, going for chemo doesn’t just mean getting two drugs. The infusions I will get on Tuesday are numerous. I will get the following 8 infusions in this order: Decadron (helps with nausea and mainly to help prevent an anaphylactic reaction to Carboplatin because I’ve had more than 6 infusions), Pepcid (helps with anaphylaxis prevention and also bonus heartburn help), Benadryl (helps prevent anaphylaxis), Carboplatin (chemo agent #1), 1 liter fluids (helps prevent dehydration and bonus helps to keep kidneys functioning well to avoid high creatinine levels that can be dangerous), Aloxi (anti-nausea, blocks signals from stomach), Gemcitabine (chemo agent #2), Emend (blocks nausea and vomiting signals from the brain).
Away I go… thanks for the support. These days of uncertainty are difficult for me. I like a plan.We have a short term one and I am, as always, moving forward. As I wrote in a prior post and re-read tonight:
Cellular biology is King.
But paired to that fateful ruler
I shall be an argumentative, rebellious Queen.
Wring the most out of each day.
Find those bits of joy and beauty,
Make sure that what I’m doing isn’t waiting around to die.
For truly, that would be a waste.
Link to Twitter
Thinking of you, Queen Lisa.
So happy you and Colin enjoyed some golden hours together. All the best for tomorrow and the week ahead.
I am so grateful for your honesty and courage. Thank you for such informative posts. Considering how precious those “feel well” moments are to you and your family, I am grateful. And for the record, I don’t know many who could have survived a weekend of “travel” ball with that many hours on the road and find the joy. And yet, all I have to do is see the photo of your son and know, it was a great time!
I love you so much. That is all.
Wishing you a smooth process today, it is morning here in Yangon and I am sending the sun gently and slowly over your way.
Thinking of you
P xox
Love to you, Lisa. Thinking of you often.
I always look forward to your poetry and updates! Thank you for the wisdom. xoxo
All the hugs. All the love. All the admiration.
You are making memories each day for your kids, that will never go to waste, sending you loads of strength and healthy vibes
Lisa, what an amazing and brilliant advocate you are.
Queen Lisa, indeed! Queen of honesty, reality, beauty, gratitude and so much more.
Love and happiness to you.
Thank you for the update. I hope the short-term plan does what you need it to do until you find the next option.
xo
I appreciate the explanation – to know how you decide and frankly, it was helpful to me when it comes to drug trials for my daughter’s Friedreich’s Ataxia. You have been on my heart a lot lately. I dream of a pain-free day for you in which the thought of cancer doesn’t even enter your mind. Take care, my friend. It sounds like you are living your life the best you can in this moment. love and hugs.
I bow down to you, Queen Lisa, you humble me for I am awestruck by your strength, your sense of priorities, and your compassion. I know it’s tiring for you to write these blogs, but I am so glad you write them. I hadn’t commented in awhile so I wanted you to know I am still here and listening and always, always (!) sending love your way.
Brilliant post. So clear. What a wonderful memory for your boy to have, for the rest of his life.
The words which you share are some of the most well-chosen to be found in this big web world! Thank you again for educating so many of us.
Thank you so much for the info on trials. I don’t need them yet so it is harder to get a handle on how they work. But I am sure you know how we feel better knowing everything available to us. Do you do 21 day chemo or weekly? I may have to make this decision this week? Thanks again for your help. Love you.
I get Carbo and Gem on day 1. Gem only on day 8. Nothing on day 15. It is a two week on, one week off cycle but only both drugs every 21 days.
Lisa,
I think of you often and follow your posts….your information is helpful to so many. Take care … Thinking of you!
Your bravery is breathtaking. Thank you so much for sharing your journey with us.
Dear Lisa,
Thank you so much! Your posts are always interesting and helpful.
Hugs from Italy.
You might not be a doctor, but you explain things better than a doctor! Thanks, now I finally understand what clinical trials 1, 2, 3 mean.
It’s Tuesday morning as I am reading this. Good luck today! So glad you got to be there for Colin!
I am so happy for you that you were able to make some baseball memories with your son. Thinking of you every day.
Thank you for this lucid explanation. I hope everything goes as well as possible.
Lisa,
Hoping you’re doing well at this very moment at the MSKCC…
Your explanation around trials is quite impressive!
Phase 1 trials are indeed a strange beast – needless to say, they used to be for ‘healthy volunteers’ – however, with cancer, investigators are becoming more eager to include patients.
Some phase 1 trials, though, end up determining the dose fairly soon, and subsequently evolve into a phase 2 trial (sometimes referred to as “Phase 1/Phase 2” trials, increasingly frequent on clinical trials registries). Would you be open to such a trial? Are there such trials available at MSKCC or elsewhere for you?
Oh and… May your ‘team’ ALWAYS win (and not just in baseball)…
Nothing available right now like that for me. I would have to enter as the Phase I and even a “short” time ( would have to be months) would be risky. I of course agree that the Phase I/I design is more appealing though.
~*~ Whatever you may do, where ever you may go, you are truly blessed & loved by so many! Bless & Release! ~*~
xoxo
Thank you so much for the update and the explanation of trials. Hope things get much better for you. Glad you were able to spend such a wonderful day with your son.
Dear Lisa,
Thank you for your most informative and inspirational posts-always beautifully written. So glad that you had such a wonderful time with your son.
Very best wishes,
Barbara
This is the first time I’ve been able to read your blog, even though I’ve been following (?) your blog for years. The main excuse I used is that my oldest sister died at the age of 32 from breast cancer that had metastasised, 16 weeks after our fathers unexpected death, even though it’s been ten years it still hurts like hell (the worst comment my sister got was when she went to the supermarket one day she overheard 2 old ladies talking about her, one was saying to the other that my sister was one of those butch lesbian types it hurt her so much, not so much the comment it was the judgement, I still get stabby thoughts about those two, anyway she never left her house alone after that, even then it was just for treatment) I could write an essay about my sister & Dad and the aftermath but it wouldn’t help, they would both still be dead.
The second excuse is because I’m terminally ill. Not from Cancer but from so many other things, I take 60 pills a day and am on 2 types of morphine, so please excuse the waffle it’s the morphines fault. BUT the real reason was plain old fear, it is so strange but for some reason I clicked on one of your old posts it was when your Cancer came back, it was written on October 3rd which is/was my sisters birthday. Anyway I sucked it up and read, from beginning to now, and you get it, I’m 41 with 2 girls (14&11) and I have a terminal sentence, and everything I’ve been feeling, all of it, you get it and you explain what I thought was unexplainable, and I want no need to thank you. I’m sure there are a lot of people like me, living yet not living and just by reading your blog, every word it helps, it helps to not feel so alone, even though I have a huge support network etc etc sometimes I feel so alone, so thank you for helping whoever needs it by writing what a lot of us are too scared too. Thank you.
Lisa, thank you for explaining clinical trials in layman’s terms. I never understood their distinctions before. I hope your current chemo regimen remains tolerable and works its needed magic for the long haul. Heres to less traffic, more softball games, laughter, music and lots of beautiful smiles!
You are a rock. xoxoxo
Oh how I love the rebellious, argumentative Queen! Thank you for explaining trials to us, and your decision making process. I am grateful for every piece of information you share with us.
Dear Lisa,
The lessons of your life go beyond cancer to the very heart of the human condition: persistence in the face of challenges, love of family, appreciation of nature and, last but not least, protection of one’s personal and philosophical boundaries.
Thank you for this.
Lisa, I just happened on your blog and the current one where you explain the various phases of clinical trials. I found that informative. My husband just found out he has a rare form of cancer (pseudomyxoma peritonei) and the only treatment available at this point is a clinical trial. It says Stage III – so now I know what that means thanks to you.
I wanted to look at other cancer blogs for ideas for what to write now that we are in the waiting phase – waiting for the major surgery in a few weeks. The treatment for my husbands cancer is far different from normal ones as typical radiation and chemotherapy are not viable options. We get, from what I understand, one shot – during surgery – with heated chemotherapy.
I pray that you are able to spend as much time with your family. I appreciate your candidness and your sense of humor. I look forward to reading more of your blogs. God bless you, Lisa.
Hi Lisa,
your post caught my eye because I had never heard of this type of cancer. I did some quick googling and was really surprised. Very unique type of cancer. I will hope for the best for both of you!
Tracy
And I meant to say HI DAWN! Geesh!
Long live the rebellious, argumentative queen! Thank you so much for the update; elated that you had more energy and the ability to spend it with your son. It’s touching to read. Keeping you close to my heart.
I join the long list above of thanking you for your clinical trials explanation, which may soon be an option for me. I rejoice with you at your ability to seize the days with your son and family.
Like you I was first treated with Afinitor and exemestane after my initial stage 4 diagnosis 1 year ago. After 4 months, they proved unsuccessful and I’ve been on Xeloda since last March. I have a CT-Scan tomorrow and hope that the disease is still stable but won’t be surprised to learn that it has progressed based on how I feel here and there ( metastases in my bones, liver and lymph nodes).
I am encouraged by your blogs, though so empathetic to your sufferings. Thank you again and again for you explanations, your poetic words, and as a gardener myself, your lovely flowers.
You’re such an encouragement to me. My wife is an alcoholic and it has been proven that alcohol dependency is a medical illness just like cancer. I’m trying to convince her to go to a certain alcohol addiction treatment centers in Oregon so that she can seek help on how to overcome alcoholism but she is ashamed and afraid that she will not be able to become sober. I love my wife and I want to help her in defeating alcohol addiction. I’m looking forward for the day that she can be like you Lisa who is brave enough to face her problem. I will going to share your blog site to her to inspire her and think that every woman has a different battle that needs to defeat for their loved ones.