Not that unexpected

Monday was the day I had several appointments scheduled in the hospital:

9 am blood draw

10 am meeting with oncologist

11 am Keytruda infusion

12:30 pm post operation checkup

2 pm preliminary meeting regarding radiology

But everything sort of went side-ways starting with the labs. My port had been removed during the operation (thank God), because I believed it was infected as it never really stopped hurting. It was implanted back on January 5th and after several weeks you are not supposed to feel it. Five months later, even wearing a t-shirt over it was sensitive. 

So now, the labs and the infusion would have to be done via regular IV. For almost two hours several nurses, including the specialist, were unable to find a vein for me, and we finally gave up. My veins are tricky, but this day probably some planet was in retrograde, and even with all the fancy equipment they were not able to draw blood.

And, consequently,  my schedule was in disarray, and at 10:50 am we met with my oncologist. She brought a study graph and explained that even though during chemo Keytruda is key, once the chemo is over, according to protocol there are 5 more infusions, but the efficacy of those is not that obvious. The difference of recurrence without these treatments is less that 2%, but the side-effects are still there.... so, considering that getting an IV for me seems to be in the realm of the impossible, we decided to forgo the left over treatments for now. So we crossed the Keytruda infusion from my schedule.

Grand Slam

Sunday at 7:30 pm I got a happy call from my surgeon -- she got the results from the pathologist, and I have what is called "a complete response": disappearance of any signs of cancer. That in itself doesn't mean that the cancer is cured, only that the chemotherapy killed off whatever cancer cells we knew about.

The cancer cells might still be in the body and might start growing again.... but we don't worry about it now. I still have several Keytruda infusions (4) and over 30 radiology treatments to make sure the cancer stays away, but at least there is a light at the end of the tunnel.

Test day

Now that the chemo is over the doctors have to figure out several things: did it work, how well it worked and when the operation should be scheduled.

As I see it from the inside, at this point, there are very few precise diagnostical tests available to actually pinpoint the cancer cells. Most of it is a bit of approximation and protocol: this larger, darker mess might be cancer, so let do these MRI, CT scans, or ultrasound to narrow the guessing just a bit..., but the only way to be sure seems to actually remove the cells via biopsy or actual operation and grow them.

So, in this imperfect world, I spent the entire day today, Thursday, being prodded, tested, and imaged to such an extent that could barely talk by the time it was over. From 8 am in the morning till 4:30 in the afternoon, Dana Farber was my "experimental rabbit" trial.

I had:

• numerous vials of blood drawn in preparation for the operation
• Keytruda treatment (I still have at least 4 more to go, every three weeks, I believe)
• an MRI
• a mammogram
• an ultrasound

2nd AC chemo

The second AC chemotherapy is done! ✅ 

The morning blood work was nothing out of the ordinary, and my white cells were back to normal and the red cells a bit on a lower side, but chemo was still a go. However, the doctor said that because they still suspect that I might have pneumonitis because of Keytruda, I should go and get a CT scan to completely rule it out. So before the infusion I had to get this scan. 

Maybe because of this additional scan stress, this chemo was much harder going in, as well as the actual infusion: a metal taste, a burning sensation and all I was able to do is try to sleep, no watching any movie.

Two down, two more to go. Becoming like a mantra now...

On the plus side, before chemo we walked around the building with a friend of ours Artem who is an architect and currently building another cancer hospital in F L and to hear what he actual looks for was quite interesting.

New side effect

I have had this really dry bronchial cough every evening for several days. I must admit, at first I thought I was just picking up some run-of-the-mill virus because of my low white cell count. But as the cough got worse and worse, I started to realize something was up. Losing my voice to the irritation for a day was just the cherry on top.  A friend of mine, visiting me this week, has an asthma inhaler and that is the only thing that managed to alleviate it. 

I called my doctor to get that inhaler by prescription so that I could actually sleep at night. But nothing is easy. 

It turns out that bronchial cough is a known side effect of the immune treatment Keytruda, and even though I already had 6+ treatments, like all chemo it has a cumulative effect and it seems that now it finally kicked in. 

"Immune checkpoint inhibitors may cause pneumonitis, which is inflammation of the lungs that can cause a cough or trouble breathing. Pneumonitis is uncommon but may be serious." per doctor Google. 

Leave it to me to get the uncommon side effect. Just my luck, right?

My doctor requested that I go the hospital for an emergency lung scan to see if I had gotten any inflammation before prescribing the regular steroid inhaler.

Nothing like a little medical drama to spice up my birthday week! 

AC chemotherapy cycle

So the faithful day has come and I started the next cycle of chemotherapy, what I call the dinosaur of treatment that has been used since the 1960s if not earlier, vs my first chemotherapy cycle that became standard protocol for triple negative breast cancer only in 2020. 

The second chemo cycle is biweekly AC: Adriamycin (Doxorbicin) and Cytoxan (Cyclophosphamide), a total of 4 times and Keytruda (Pembrolizumab) every three weeks

The horror of the description of the actual infusion was not encouraging --- a burning sensation as it is administered, an awful metal taste, nausea and that is just to name a few....

But, as a happy contrarian, I am glad to report that not only I survived it, I avoided most of the above.

The 1st chemo in new cycle ✅

I got home and in addition to my regular fatigue I was nauseated and sleepy, so no movies to save me ☹, but unable to sleep. And that is exhausting.

6th chemo

 Another Thursday, another chemo.  Arrive at 7:50 am at, oh, so familiar Dana Farber center ( the third floor check in, the blood work station, the south infusion pods) and out by 12. There is no Ketruda immune treatment today, so it is a much shorter infusion.

Now that 6th chemotherapy is done ✅, I am officially half way through my first type of chemotherapy.

(There will be 12 sessions all together for this one.)

I am slowly starting to feel the cumulative effects of the chemo, but it is still manageable.

Treatment regiment

Dana Farber recommends doing TCK chemotherapy EVERY week for 12 cycles, then AC chemotherapy every two weeks for 3 cycles, then 3-6 weeks break to recover before surgery. Then 3-4 weeks after surgery another 4-6 weeks of radiation and immunotherapy IV every 6 weeks for a year.

In one sentence, the fun would last for a while, with the surgery sometimes in May/June 2023.

TCK: Taxol, Carboplatin, and Keytruda (Pembrolizumab)

AC:  Adriamycin (Doxorbicin) and Cytoxan (Cyclophosphamide) and Keytruda (Pembrolizumab)

Interesting, that Lahey has the same drug cocktail, as least for the first 8 cycles (didn't get much details beyond that), but every 3 weeks with much larger dosage, and worse side effects up front.

Chemotherapy 101

What have been told so far from Lahey-- the three main chemicals in chemotherapy are:

1. Taxol, 1 hour, weekly
2. Carboplatin, 1 hour, every 3 weeks
3. Keytruda or Pembrolizumab, immune system booster, every 3 weeks, 40 minute

Plus another drug cocktail the night before with some steroids, Benadryl, nausea medication. Still trying to get the full list of pre/during/post medications.

I wonder if this is standard protocol across all hospitals or will this differ when we hear our second opinion in a week?