I have been writing a bit about my clinical trial here but have not updated in a while. I decided, after careful thought and prayer, to sign up for the Pallas clinical trial back in August. I had just completed all of my "treatment" and was now down to going to see doctors once every 6 months but with surgeon and oncologist, that wound up to be every 4 visits a year as I would go in May and November to oncology and June and December to surgeon. Oh and in between those dates, I go in for my Lupron shot every 3 months, too so that is usually February, May, August, November.
I completed chemotherapy in May 2017 and my last radiation was July of 2017. I saw my oncologist once after chemotherapy only. She recommended at that visit that I consider joining the clinical trial for IMBRANCE (called the Pallas trial). I wrote all about my decision process and how the trial works regarding if you get the pills or not here --> lets-get-clinical-clinical.html and also here --> integrative-medicine-clinical-trials.html.
Getting cancer is almost like a part time job, really. There is so much to do but for many people, there is a "post treatment" funk that is common to all cancer patients, in my opinion. We go from seeing doctors and medical teams every 2 weeks for treatment and bloodwork and then we see everyone much much less. For me, this is not the case but it could have been if I decided not to do the clinical trial.
Yesterday, was my visit to get bloodwork and the next 3 cycles of drugs for the trial. Originally, I was going in every 2 weeks to do bloodwork and then at the 4 week visit picking up the month's pills (see more about that here - going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html). I last was with oncology in October to do the bloodwork and then I was given the 3 cycles of pills. I am now on the 6th "cylce" or month of Pallas. I have been lucky in that I have not had any noticeable side effects. I do have low blood counts, which is normal for this class of drug.
The trial lasts a total of 24 months. I am happy to be doing my small part in helping test a new class of drug for breast cancer patients. It is an already FDA approved drug for those with stage 4 breast cancer. It is being studied to see if the same effects of cancer killing can be proven in earlier stages. I do this trial in addition to my hormone inhibitor and Lupron ovary shot.
I will update again on how it is going. Did you take part in a clinical trial? How did you find it? This is what I do in the time between.
This is a tough week for me. I have not been sleeping well and everyone in my family is a "snotmonster" and all congested and coughing (including me).
Of course, this was making me think I should be concerned for me and my health given the whole cancer thing but then I realized that if everyone in my house is doing it, it should be ok, "should be" the operative term.
When I was feeling sorry for myself this morning, something crossed my Facebook feed that made me stop and smack myself. It is the story of a 5 year old girl diagnosed with DiPG the worst kind of brain cancer and given 9-12 months to live. That shook me right up and I am including the link to the YouCaring site so if you can, you will donate something to this family. I do not know them AND I am unemployed but I donated $10. I would have done more, if I could. I know I cannot donate or help every family who is hit with cancer for a child but I will say again that cancer sucks but it is so much worse for a child - give what you can here and if you cannot give, please share the link-> www.youcaring.com/parentsofaveryandyandemilyneill-1047204?fb_action_ids=10214612959054343&fb_action_types=youcaringcom%3Adonate.
Tomorrow I go to Sloan for my yearly mammogram and sonogram on my remaining breast (good old lefty). It is something that has been bothering me subconsciously and I think that is why I have been unable to sleep too well this week like at all. I have been tired and groggy and snotty (not the teenage variety but literal snot) since Monday (and even for some of the weekend, too).
My remaining boob has been prodded and checked at each and every follow up over the last year (with my clinical trial I was seeing my oncologist monthly for a bit and each visit I got manhandled lol going-to-sloan-monthlyor-not-more-about-the-pallas-clinical-trial.html) AND I check it every month on the "feel it on the first" campaign and it all feels ok. Tomorrow, though, is my first mammogram and ultrasound since the big Diagnosis and after that whole cancer plot twist last year, I guess it is normal to be freaked out.
And I think I am kind of freaking out. I mean, I didn't freak out a month ago or even a week ago but I am kind of freaked out now.
I am working hard on putting it all in perspective and seeing that family's story about the young girl being diagnosed definitely is making me put it in perspective and just take a deep breathe, meditate, pray and just deal with whatever it is. I know that my worries today, my freak out right now, is not going to help or even preclude any bad news from potentially happening nor will it make me feel better if/when I get good news, either - it is just a waste of energy to worry right now. I know I need to stay focused and smile but damn today, the day before I go in to sit in that waiting room in that robe waiting to be called and squeezed and prodded, I am freaking out.
I hope that I get it out of my system today but between everyone's cold, coughing and congestion (it is like leaky faucets over here, no joke) I just know I need to rest and not think about it. I should instead by thinking, well, it could always be worse so let me just enjoy today, right now, no matter what happens tomorrow, I have this time between and yes, we are all feeling yucky and I am exhausted and not at all ready for tomorrow but I will get it over and done and survive it because that is all I know how to do. It is how I got through chemotherapy just that focus to just get it done knowing it was something I had to do in order to get to "cured" or "healthy".
Did you freak out at your first follow up mammogram and sonogram after breast cancer? How did you deal with it? I know now for next year that I need to take better care of me before these testing dates come up because I do think if I did not feel so yucky and had been able to sleep better, I would not be as freaked out as I am ... (it is like a game of what came first, the chicken or the egg though because I probably did not sleep well because of the worry for the upcoming test...)
What do you think?
When you get cancer, you find yourself in a world of doctor appointments and hospital visits and meds and the like. Once your active treatment is done, the world of follow up appointments begin. These are less frequent than anything you have done before. You are used to going in every 2 weeks (usually) for chemotherapy and sometimes more often that that before you get to chemotherapy.
I have already written about my decision to join the Pallas clinical trial lets-get-clinical-clinical.html and I have shared on my Instagram bits and pieces of the cycles - I am entering my 3rd cycle (read: month) of the clinical trial. The first 2 rounds went well, bloodwork has been, in my oncologist's words, "Perfect" and I am here today at Sloan to learn how I am doing before I start cycle 3.
There are tons of potential side effects for this drug but luckily, I have not experienced too many. I do find myself having joint pains if I do not drink enough water and take an aleve, if needed. The big issue is not drinking enough water, though, because as long as I stay hydrated, I am golden.
I had been told by the study team that at times the 3rd cycle is when things impact and dosages are lowered but I am hoping I can stay on my full dosage. That being said, I do not hae the control to make this so - I will just have to wait and see what happens.
The other perk of being on this study is that I can see my oncologist more often. This is both good and bad and is a big part of the reason why I want to work in NYC again life-is-change-or-how-i-decided-to-go-back-to-corporate-america.html.
Today's visit was fun - (yes, fun) - they asked me right away how my dad was doing AND asked me how I got so skinny. I mean, how lucky am I. It had been a month since my last visit and I was so happy they remembered. Then we spoke about how I got to my goal weight after last month telling them there was no way I could do it -- but I did it! With jeans, boots and the flimsy robe thing I was exactly 147 on the money.
I found out today I do not need to get back to see my oncologist until January! January! After going once a month to see oncologist and every 2 weeks in between for bloodwork this is like crazy!
I am confident that the fewer visits is a good thing. I can get moving on my life's plans. I have a Lupron shot to do in November then surgeon in late December, oncologist in late January.
If you have been considering the trial but thought it would be too many appointments, good news, it tapers off.
This is what I do in the time between.
Busy times lately trying to get about the business of being a (hoping to be) survivor. It has not yet been a year since my diagnosis and as with everything else, time really does heal all wounds. There are times that I forget about what I have been through (until I look in the mirror).
This was always the goal, to get through it and then to put it in the rear view mirror and get back to the business of living but it does not always work that way. No matter what, cancer is a part of my story, a part of my plot and it is something I have to watch and actively attempt to keep from coming back - or at least, that is how I feel. This feeling is a big part of why I am blogging, too, to keep sharing my thoughts and experiences for others and even just to keep my family and friends informed of this big thing called life with cancer. The main thing behind sharing my story, warts and all, for those who are in this world with me dealing with this disease. I have heard from women in Ireland, Australia and right next door in Brooklyn who have all said they felt the same way and/or that they understood what I am writing about and that is so damn powerful and empowering.
My focus is, of course, to be cancer free and I guess "cured". I was told that breast cancer that is Stage 0-3 is curable; stage 4 is not. I want to be cured but I also know that really it is not something I can control. I understand that cancer is a wily bitch of a disease. I know that I can be no evidence of disease as I was post surgery but still have things going on that I do not know about. The human body is a mystery, even our own bodies.
I am now so open about my experiences with the disease that I am building a community of people who are also dealing with their cancer plot twists and I am no longer hiding from the facts that cancer does, at times, kill. I am learning of people who have done everything "right" and still did not get to be a survivor. I am doing all I can to not fall into that category but I do know it also takes miracles, faith and luck. Yes, luck.
Most people are walking around with the potential of cancer in their bodies but not everyone gets cancer. I wrote about this in my review of the AntiCancer book --> learning-about-the-beast-breast-cancer-anti-cancer-book-review.html. So for those of us who do get cancer, it is like entering an alternate universe where your doctors have to hurt you to heal you and the question, "Am I ok now?" is most often answered with a "Well, for right now, we do not see any evidence of disease BUT..."
To help with this "but", I am doing the PALLAS worldwide clinical trial (more here lets-get-clinical-clinical.html). As I have written before, this drug is FDA approved for Stage 4 breast cancer - it turns off the proteins that drive cancer and comes with a whole slew of potential side effects, such as low blood counts. I take the drug for 21 days a month; 7 days off and then the next cycle begins. My body and blood counts have been in the words of my oncologist, "Perfect." on the trial. Some folks need to get the equivalent of the Neulasta shot we did post chemo to increase our blood counts. I did not need that shot so yeah! At this point, I am at day 15 of the drug and my counts are probably going up again now (they did seem low at my last blood work on 9/12 but oncologist said "perfect" so that is what I will accept as truth).
To help with the other BUTT (that of my weight and fitness plans), I will also share about my visit with the integrative medicine doctor at Sloan Dr Deng-
I also have written about changing my eating and exercise habits to help get fit. Breast cancer loves fat cells, I am learning. Many people have asked me about my "clean" eating and I wanted to share about it along with the alternative medicine doctor's appointment I had at Sloan.
Once I finished treatment, I stopped eating meat, dairy and processed foods. I added in more vegetables, lean protein with fish and chicken (all antibiotic free and organic) and I added in soy milk and soy yogurt. I learned from Dr Deng that I should avoid soy in large quantities as it also has hormones. I can have a soy yogurt but not add in extra soy milk with it.
With these dietary changes I also experienced an increase in grocery costs. Holy moly it is expensive to eat "well". Also, I was not seeing a change in my weight with the small amount of foods I was eating. I would have a smoothie in the morning, wheat pasta and fish for lunch and a salad for dinner with nuts during the day for snacks and a soy yogurt. That was it. Along with that, I was doing about an hour of cardio a day almost 5 miles total of movement per day. And with that, I was stuck at a 22 pound weight loss and no more. Really those 22 pounds were a fight but once I lost it, the scale was not moving anymore.
When I met with Dr Deng we discussed a bunch of stuff around terrain, herbs, supplements, diet and lowering my risk of recurrence. He was happy I knew as much as I did from my research so he did not have to cover basics. When he examined me, he said right away that I have to work on my waist line. My waist line has always been an issue - I look perpetually pregnant if I am being honest and I looked this way even before I even actually was ever pregnant.
He suggested that I drop just 10 more pounds. Ha. 10 more pounds when 22 was so hard to lose?? It seems impossible. For the longest time, I have been making smoothies in the mornings for breakfast with kale, spinach, orange, banana, strawberries and mixed berries with water and having that WITH a carb like a whole wheat bagel and/or whole grain english muffin. Dr Deng suggested I expand on these smoothies by doing the 10 day smoothie challenge using the book by JJ Smith. I got the book yesterday and began the cleanse last night.
Why? 1) I am vain and would love to weigh close to what I weighed in high school - who wouldn't? 2) I am nothing but in love with a challenge - oh breast cancer and 2 kids and working - let's do it! So now I am going to attempt to do the smoothie challenge but with a few modifications. I will be eating food at lunch time. I cannot get over not chewing. With the smoothie plan you can have nuts, fruit and veggies in small portion sizes but I am also going to include lunch.
So today, I had my smoothie mentioned above along with a handful of almonds. At lunch time, I had an apple. Then I had a 1/2 whole wheat pita wrap with chicken salad. I had a handful of nuts and now I am having my dinner, which is another smoothie.
I have no clue if this will help or not but I am looking forward to working on abs - on finding abs first and then actually having them. Anything I can do to keep my risk as low as possible is what I will do and along with that, I will try not to get too obsessive because at the end of the day, I am not in control. I am praying and hoping I will be cured but it is not truly all in my hands - only part of it.
What are you trying to do post breast cancer to regain a sense of control? I will let you know if I can maintain this smoothie challenge...
I shared recently about my decision process regarding a clinical trial for PALLAS and my follow up appointment at Sloan spending-the-day-at-sloan.html. I have begun my trial, today is day 2 of the medication.
What does it mean to be on a trial:
My oncologist recommended this trial to me and after careful consideration, I decided to be a part of it. With this trial there are no placebos. You know if you get the drug or not. Even doing a trial, you still get the regular standard of care. So with my ER/PR+ breast cancer (find out more about my diagnosis here --> thetimebetweenis.weebly.com/speaking-engagements--press--about-me.html) I get the 3-month "follow up" but only every 6 months do I see the oncologist - the other visit is with the nurse to maintain my Lupron shots (every 3 months) and I take daily hormone suppressor pills (astrezenole 1mg).
Being part of the trial means that I have more frequent follow ups, which since I am not working right now is not a problem. It also means I will be more closely followed by my doctor and these visits are kind of outside of the world of my insurance coverage (as insurance will only cover the regular visits of once every 6 months for the oncologist, etc).
Also with the trial, the drugs are provided via the study and not through my insurance.
How you join a clinical trial:
I had to sign in triplicate the study explanation along with my oncologist. This is basically boilerplate that explains the study, why it is being done, how it is being done and also explains the drug and its potential side effects. I originally was given this paperwork to take home and review after my follow up post chemotherapy on May 31.
I decided to sign up for the study in mid-July and submitted the paperwork to request my spot in the study at that appointment. I was approved to join the study in early August but was not able to visit Sloan to process my application until the end of August due to some vacations and other plans for the summer.
The process is usually done over a couple of days but my oncologist was able to get it all done in one day; but that meant I was at Sloan for the whole day.
First we had to re-sign the study documentation. Then, I had to give blood. At that point, my paperwork was processed by the study group and the computer randomized me to Arm B of the study (the portion that gets the drug). Obviously I am Arm B.
Arm A does NOT get the drug but does get regular standard of care and slightly more frequent follow ups. Arm B gets the drug, standard of care and I go every 2 weeks for blood work to ensure my levels do not drop too low and I see the oncologist every 4 weeks.
What about the drug?
I take the drug for 21 days straight and then 7 days off. At day 14, I get blood work and then at week 4, I go in get checked and pick up my next bottle of 21 pills.
For side effects (as much as I can tell at day 2) is that I am a little tired and I am anticipating that my levels will drop so I am going to work on maintaining my chemotherapy tips to avoid getting too sick and needing to potentially go to hospital. (See my tips here --> tricks-for-treatment.html).
If my levels do go too low with the monitored visits, I might be taken off the 125mg dosage and brought down to a lower dosage.
How it feels?
Nothing is like chemotherapy - chemotherapy is something that knocks you down and keeps you there. I am hopeful that this drug will not be as severe as chemotherapy and that I can withstand the dosage. I want to do all that I can to keep this cancer away. I was told I was "NED" (no evidence of disease) in December 2016 at my two week follow up post surgery and then did chemotherapy 8 rounds and 33+ radiation sessions. However, no one knows what can happen in the future.
I feel that if I am doing so much and have done so much to protect my future and to one day be a "survivor", I will do whatever it takes to stay healthy. Even if the medication can knock me out...
That is what I do in the time between. Have you been suggested to take part in a clinical trial? Did you decide yes or no? Why?
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