Tuesday was a full day for me at Memorial Sloan-Kettering for Cycle 1, Day 16 of my current clinical trial.
With snow flakes and rain mixing in the morning rush, I decided to skip the train and go early with my husband as he made his usual morning commute to New York City by car. I knew this would get me to the office quite early. I was the first to arrive in the waiting room and didn’t mind the long wait. It gets very busy and noisy later in the day and I’m always happy to sit in warmth and comfort of a quiet room. I arrived at about 7:20 and my first appointment wasn’t scheduled until 8:30. I was fasting, so I did miss my morning coffee quite a bit while waiting, though, especially as other patients began to arrive and use the coffee machine!
I meet with the research nurse first. She weighs me (down 2 pounds from two weeks ago), takes my blood pressure (oops, very high using the machine, we’ll retake it manually, oh that’s much better, thank you very much), pulse (in the 90s), oxygen saturation (better than last time, now normal).
We review how I am feeling on the Faslodex and GDC-0032 combination. This is the first time I am discussing it with the team since starting the protocol. She goes through a list of symptoms and asks about each one. The list ranges from gastrointestinal issues (very important to monitor on this investigational drug) to neuropathy to dizziness to fatigue to rash. I am pleased to report that I feel quite good on the combo. I experienced a few days of hot flashes and night sweats from the first injections of Faslodex two weeks ago, I tell her, but that was it. From the GDC I really only have had appetite loss, metallic taste in my mouth, a bit of muscle pain, and slight fatigue as the most noticeable issues. In general, we both agree, I am tolerating it very well.
The biggest change I’ve experienced in the last two weeks is a drastic change in my breathing– for the better. I’m quite sure, I tell her, that my pleural effusion (excess fluid in the lining around the lungs) is almost resolved. This is great news and I am anxious to find out if my doctor hears the change. I also tell her that after much thought I have decided to have a port placed to make my blood draws and tracer injections for CT and bone scans easier.
Next I meet with my own oncologist. Usually I would meet with the Principal Investigator for this appointment. She was not in the office on the usual days this week, though, and I must have my check-ins on certain days in the cycle. I was told about the switch in schedules well in advance. The plan for the long term anyway is that I will transition back to my own oncologist for monitoring. The two doctors work closely together and there is no problem in doing this.
I haven’t seen my oncologist in what seems like a while (probably about one month) and we are happy to be “reunited” for this appointment. We review how I am doing clinically. She also gives me a physical exam and listens to my lungs. Yes, she agrees, there is a big change for the better. We discuss the port, and she orders the needed additional bloodwork for it.
We talk about the trial and other topics. As always, she asks about my family and writing. I tell her about the song I wrote and promise to send her a link to it. I tell her I have been invited to come talk to the class of Fellows at Sloan-Kettering in a few weeks about caring for the metastatic breast cancer patient. I am truly excited about this invitation. There isn’t anything I can think of that is more important than talking to young physicians about ways to make doctors and patients partners in care in light of a metastatic cancer diagnosis. I’ll share more about that visit as the time approaches.
Next I do scheduling for the next appointment in 2 weeks. That will be a much shorter day than today. Each appointment in the first 8 weeks on the protocol has different elements. Today will be a long day. Next time will just be a visit with the Principal Investigator and a blood draw.
Next I head upstairs to the chemo suite where they have a room waiting for me. They have already called downstairs while I am doing scheduling to tell me which room to go to so I don’t even need to check in. The nurse I had last time comes in to the chemo room. I immediately tell her that she did a wonderful job with the two huge injections of Faslodex last time. I tell her the slow injection rate seems to have worked; I was sore for days (expected) but no bruising or welts. I always try to give as many compliments as I can; I think these oncology jobs must be very stressful and I would bet the complaints come often. If possible, I try to find something good and comment on it. Everyone likes being appreciated.
Today I will need to have my blood drawn, take my GDC-0032 pills, wait four hours, and have my blood drawn again. I must always wait one hour after taking the pills to eat. By the time I do all of this today it will be noon. The nurse gets a vein in my wrist easily for the required 12 vials and when we see it’s a good flow we agree to leave the line in and try to use it four hours from now and avoid another stick. I’m reactive to adhesive so she wraps me up carefully and I slide my sweater sleeve back down.
I take my pills with a full glass of water and document the time in the medication diary that I am required to keep. Then it’s time to drop my trousers for the two big Faslodex injections. I am not too nervous about this part now that I’ve done it once already. I will get these today, again in two weeks, and then monthly thereafter. I have mastered the art of muscle relaxation for these shots and use a trick of putting all of my weight on one foot while they inject the opposite side. Again the shots are uncomfortable because the viscous liquid is getting rammed into a muscle. But she does it slowly again as she is supposed to, and we’re done quickly. I still am self-conscious as the lightly-frosted sliding glass doors are all that stands between my tush and the hallway, but I’m already over that. I think the idea of facing the wall and clutching a table as needles are jabbed in my backside is probably more laughable.
I put on my coat, knowing the worst is over for the day and go meet a friend for lunch after waiting the required time to eat.
Later, I return directly to the same room I was previously in at the appointed time. The line still in my wrist yields a good flow, a few more tubes are drawn, and we’re done for the day.
Seven hours after first entering the building I am free to go. I still have two more weeks’ worth of the GDC-0032 in my bag and so I do not need to visit the pharmacy. At the next visit my medication log will be checked and my remaining pills will be counted and confiscated before I am given another 30 day supply.
…….
Over the last two days I have ended up needing two more blood draws, met with my local oncologist, and got my monthly Xgeva shot. After 7 needles in 3 days I’m glad to now have a few days off. I ended up needing to repeat one of the tests required for the port placement procedure (Tests related to clotting are routine before any surgical procedure. One of these was slightly elevated and I needed to repeat it. The second test came back just fine).
I also had my tumor markers done. This blood test is not a part of the clinical trial requirements. I’ve decided to watch these to see what they do while taking the drug. I’m sure some people would not choose to do this. This week’s test showed the numbers were quite elevated over previous weeks. We don’t know what that means. I have no increased pain, none of my other bloodwork shows any reason for concern. The numbers sometimes rise on new therapy before they drop. My breathing is significantly improved. So, we focus on the clinical signs and will just have to see what the markers do. I wish they had dropped, but I’ve seen the imperfect nature of this test time and again. I am able to realize this is only one piece of the puzzle right now. It doesn’t affect anything about my treatment plan. A reminder: in this trial success is measured by doing CT scans at varying intervals. My first one will be five weeks from now, at the seven week mark. Only then is a determination made about whether it is working, which would be disease stability or reduction. If the overall “quantity” of cancer is seen as growing by 20% or more, I would discontinue the trial and need to move to something else; it would be considered ineffective for me.
I was sore far more quickly after the Faslodex injections this time even though they weren’t any more painful at administration time. By the time I was on the train back home in the late afternoon I was hurting. For three days now I’ve had a heating pad on as much as possible. It just feels good. The seat heater in my car is getting a workout too. I know it will only be another day or two so I am not too bothered.
I don’t yet have a date scheduled for the port placement. That could be as soon as next week. I also have meetings with my cardiologist (these inhibitors can drastically change lipid levels. My cholesterol and triglycerides on my previous drug, Afinitor, went quite high. Thankfully they are coming down rapidly now but we still need to watch them carefully.) and my endocrinologist (my thyroid levels are now abnormal again. I have Hashimoto’s Disease which is usually very easy to manage but chemo does sometimes cause changes). I’m not in a huge rush to get the port, I just would like to have it in by the time I need to do the next round of scans.
I’m glad to finally be done for the week with appointments, hard to believe the weekend is almost here. I will see what next week brings and then it will be time to be back at MSK on the 25th of November for Cycle 2, day 1.
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(((Hugs)))
I love love love these detailed clinical trial accounts. Keep ’em coming.
What blood levels are important for the port placement and why? I would have thought this was a purely surgical procedure. Did you gave a port with your initial treatments? Hugs
The always do clotting tests before any surgical procedure. One of the three they check was slightly elevated so they needed to repeat it to double-check. The repeated test came back fine.
I do not recall any blood work for the port placement, but then again, I was in such a daze and had not yet taken any poison.
Thanks for the detailed update. I think of you all the time.
Hugs, JoAnn
so funny how everyone wants to know about this. I’ve modified the post to put the info in. Not sure if you can see my response to Joy… it has nothing to do with chemo. It’s only about clotting and is mandatory before any surgical procedure.
So interesting and helpful, Lisa. As you know I am coming through a steep learning curve about oncology treatment and one thing I also learned is *not* to freak out about tumor-marker numbers if clinical signs are good! What a hard lesson that was, coming by way of great anxiety initially – but it has turned out well so far.
It’s just fantastic that you are breathing better.
I have been surprised on how many days I completely forget I have a port in. I’ve never had one bit of discomfort during chemo or the port flush or anything else. However, I learned yesterday that because, during my recent port flush no blood could be accessed through my port despite repeated attempts, I will have to have either one or two procedures to fix that– apparently starting with a simple one in the chemo suite and if necessary going on to a more complicated one in the radiological suite in the hospital. Reading up on these now.
Lisa —
I’m glad to hear your breathing is improved. Hope the port gives you a little break from all the blood work and iv placements.
Good luck — thinking of you.
Wow. What a heck of a day. I don’t mean anything bad by this comment, but being sick is almost a full-time job. Obviously you think about it all day everyday, and it doesn’t go away. The time for everything is incredible, from being bedridden to going to appointments. I’m certain it’s not how you would prefer to spend it, but you my dear know that this isn’t going away and now it is just a part of your life like anything else that needs time and attention. You are incredible and I am so glad to know you, even if it is through posts and chats online. xxoo
So clearly written and explained, so filled with important details and windows into what you were thinking. Thank you so much for writing this, Lisa.
Glad to hear your breathing is better!
Wow. Big day. Sending you hugs and extra oomph for your heating pad and car-seat heaters. Comforts are excellent.
Thank you for putting everything together so clearly and beautifully.
Thanks for another eloquent explanation of the trial process. It helps so much to have it all spelled out in plain English. I am especially happy to hear that your breathing is better.
xxx
You sound like you’re feeling better, Lisa. So glad to hear that your lung issue is decreasing.
Lisa, So glad to hear your breathing has improved. You are such a strong woman, and I’m pleased to hear you are feeling better. Have a wonderful weekend with your family.
Hugs to you!
You write so clearly about such a complicated subject. Knowledge: a great gift you’re bestowing. Thank you.
I love the way you write and share xx
I was on Fastodex for 18months I used to call it the Big Fat Shot One side effect no one discussed with at first was it made me very emotional I was crying for no good reason (NOT likeme at all) so watch out for that
Cancer is so shitty and unfair. Your courage and honesty always shine through. As I have said before, you are a GIFT to your family and a “family’ of strangers who follow your posts with care and concern for you.
You are a simply an amazing role model for hundreds/thousands of women. Through your ups and downs your authenticity makes your writing accessible, memorable and invaluable. Thank you for continuing to give us real glimpses into your life. Wishes for strength and hope.
I’m so glad to read your synopsis; and especially to hear that your pleural effusion has resolved, that you’ll have a port for bloodwork (I should send you a picture of my hand (it is green from knuckles to past wrist bone) and that so far, so good on this new protocol.
I know what it’s like to arrive in the waitng room early, sometimes while it’s still dark, and wait while everyone arrives. The imagery stays will me.
love,
jody
Glad to hear the breathing is better Lisa.
My husband is reactive to adhesive sometimes too. We found that out when he had a PICC line in a couple of months ago.
I hope your backside is feeling better soon.
I’m so glad to hear you’re breathing more easily. Hugs on the hurt, and lets hope this works well! xo
Glad to hear your breathing is better! I got the faslodex shots for 6 months and can totally relate ~ even living in Florida, my seat heaters got a workout each month! Thank you for the information you are providing, hoping for more good news….
I’m so glad you’re feeling better, Lisa. And, you provide a window into ‘a day in the life’ that few of us can really see, unless we’re in the thick of it.
Fingers crossed for good results from this trial.
xo
Lisa, your writing really takes us along with you. Your detailed account of “a day in the life” is remarkable — something everyone should read. I am pleased to hear about your plans to talk with the physicians about caring for metastatic cancer patients. This is so important. Please keep us posted on that event. I will say a prayer of gratitude that you are breathing easier. And a prayer that in five weeks you will be writing about disease reduction. Take care.