IgM Antibody Negative

I saw today that Stanford redid my antibody test and corrected it to negative. I don't know what made them decide to redo the test. But I'm glad I don't have covid.

Covid and Antibodies Tests

On 12/21 I took a covid test as a requirement for my next chemo. The nurse inserted the swab way up my nose, swirled it around 10x, left the swab in my nostril for 10 seconds, then swirled it around some more before pulling it out. Yes, it was unpleasant as it sounds. That test came out negative.

On 12/28, the day of my second chemo, I was tested for covid antibodies. IgG antibodies develop 7-10 days after covid symptoms begin and remain in the blood after an infection has passed. I was negative for IgG.

IgM antibodies are produced as a body's first response to a new infection. It indicates you may have been recently infected. This afternoon I was told I was positive for IgM. I have no symptoms and hope it was just a false positive. 

But I had to take another covid test today. The nurse inserted the swab way up my nose, waited 10 seconds, then swirled it around 5x. While unpleasant, it wasn't as bad as the previous one. Unfortunately it will take 5-7 to get the test result. I really hope it comes out negative and that my friend who was helping me out doesn't get covid from me.

Dexamethasone

I'm supposed to take the steroid dexamethasone the day before, day of, and day after chemo. The dosage is two 4 mg tablets with breakfast and lunch. I realized today that I had been taking only one tablet at a time with the exception of the one given to me at the hospital. 😯

Dex is supposed to minimise delayed nausea and vomiting and help with other side effects. I haven't noticed any ill effects from my lower dose of dex. I've even reduced my Zofran from 3x a day to 2x a day. I wonder if my fasting helped. There was a trial where patients who fasted and didn't take dex compared favorably to patients who didn't fast but took dex.

Hair Loss

My hair started falling out on Dec. 17. I wasn't ready for a buzz cut. Hair kept falling out every day. Finally this morning I saw that I had hardly any hair left and decided to get my head shaved. It's not totally bald but is not a buzz cut either.

I thought I might cry when I got my head shaved, but I didn't!!! Now I'm cold.

It was my friend Sindhu who shaved my head. She also took me to Stanford yesterday and stayed with me last night and is staying again tonight. She also bought Thai food for lunch. Last night and tonight we played board games. I won only once. 😠

Chemo Cycle 2

I had my second chemo yesterday. Arrived at 11:30. Didn't leave till 18:15.

First appointment was for a blood draw. At my previous blood draw, I applied Emla cream on my port 1.5 hours before the blood draw and felt the needle deep inside. This time I applied Emla 2 hours ahead of time and didn't feel the needle at all. Yay! They must have taken at least 10 vials of blood. One of the tests was for covid antibodies, and I tested negative.

Second appointment was with my doctor. She said my tumor is getting smaller and also softer. I do feel a difference.

My WBC (white blood count) is higher than normal due to Neulasta. Technically I'm not immunocompromised at the moment. But I'm also slightly anemic, possibly due to chemo or meds I'm taking.

My doc recommended taking Zofran only once a day partly to ease constipation but also because she doesn't think Taxotere causes too much nausea. I'm afraid to cut it down from 3x a day to once a day but will compromise with twice a day. Constipation is already starting. I ate some prunes with dinner.

My infusion was at 1:30. Got saline for over an hour while waiting for my meds to be prepared. Perjeta took 30 minutes followed by 30 minutes of observation. Herceptin was also 30 minutes. Taxotere didn't start till 16:45 and took one hour. It did not give me diarrhea this time. But the heartburn is back.

Chemo Dosages

I ran across this article that talks about using lower dosages of chemo drugs. It mentions one of my drugs, trastuzumab (Herceptin). I'm supposed to be on it for a year. 

There was a large U.K. study that showed that six months on the drug was just as effective as 12 months. But there was also a French study that showed that six months was not as effective.

One serious side effect of Herceptin is heart problems such as reduced heart function and congestive heart failure. That's why I had to get an echocardiogram before starting chemo. I'll have to ask my oncologist for her opinion about the studies. It would be nice not to have to be on Herceptin and Perjeta for a year.

Tear Ducts

One side effect I was worried about was blocked tear ducts due to taxotere. My optometrist had told me before that my tear ducts were already blocked. But when I had a check-up last month, the other optometrist I saw did not mention the problem. 

So I visited an ophthalmologist today to see whether my tear ducts really are blocked. He did a test using a yellow dye and said my tear ducts are fine. What are blocked are the oil glands on my eyelids. I have to apply a warm compress to my eyes and also massage them twice a day. My eyes are also dry and was told to apply artificial tears 4x a day.

The doctor said what I need to watch out for is get excessive tearing. If it happens, that's when I need to return for a follow-up.

So Many Side Effects

I did a version of the fasting-mimicking diet for 3 days before my first chemo, expecting that it would help minimize side effects. But I don't know if it helped at all. I experienced so many side effects. Here's a list.

• Constipation
• Diarrhea
• Stomach cramps
• Heartburn
• Nerve pain
• Dry skin
• Dry mouth
• Raw nostrils
• Hair loss

The skin on my face is peeling off. My nostrils feel so raw. I still have heartburn. The diarrhea comes and goes. And yes, I'm starting to lose my hair. I will have a get a buzz cut soon. At least the nerve pain is dwindling down.

CBD and THC

My friends George and Diane realized I was having a hard time and drove 3+ hours from Pismo Beach to help me out. Having them around helped ease my recovery from all the side effects I was having. 

Diane brought CBD gummies. I've been taking the Sparkling Pear gummy (2 mg THC, 6 mg CBD per gummy) during the day and the Midnight Blueberry (5 mg THC, 1 mg CBN per gummy) at night, mostly for pain but also for anxiety. I usually take 1/4 to 1/2 gummy per day. They don't make me high. In fact I don't notice any effect from them. They may or may not be helping. I don't know because my pain is dwindling down and I still take gabapentin at night.

We did a drug run while George & Diane were here. I ordered CBD tincture (20 mg CBD, 4 mg CBDA, 1 mg THC,  0.3 mg THCA). The dispensary was in San Jose. I was expecting a small storefront. Instead it was a huge warehouse where they grow their own weed. We did curbside pickup. 

I just placed an order for more of the gummies just now because they're on sale for 30% off. I'll do another drug run tomorrow. The taxes are expensive! 

Tramadol

I was afraid to try the Tramadol for my pain because of all the side effects. My pain had been subsiding but came back Tuesday, so I finally tried one Tramadol in the late afternoon. It made me drowsy but I couldn't sleep. I took another one at bedtime. It made me extremely drowsy, but I still couldn't sleep at all. I felt so horrible. It was an awful, awful feeling, even though technically it was just drowsiness. Not only that, but the Tramadol didn't entirely eliminate the pain. 

At 3am I called my cousin Joy in Florida in tears. Fortunately she was already up. Sitting up actually made me feel better, and I spent over an hour on the phone with Joy. I'm not sure I slept at all the rest of the morning, then I had to get up at 8am to let the plumbers in.

When I talked to my doctor later, she said I was too sensitive to the Tramadol. She also thinks that because my pain moves around, I might be having nerve pain from the chemo, not bone pain from the Neulasta. She prescribed gabapentin. I tried one pill last night along with some Advil and 1/4 of a CBD gummy. Together I was pain free and able to sleep till 3am. I had trouble going back to sleep though. Tonight I'll add melatonin.

Addendum: In addition to not eating much due to diarrhea, I was also suffering from heartburn due to chemo. After talking to Joy, I kept burping. I should have just stopped but was so uncomfortable. I ended up vomiting from all the burping. Fortunately I had a barf bag handy.

Rough Night

Last night I started getting bone pain from Neulasta. I took 400 mg Advil at 10:30 pm, Claritin at midnight, and 1000 mg Tylenol at 1:30 am. My doctor and nurse said Claritin and Tylenol would take care of the pain, but that wasn't the case. I kept waking up in pain over and over again. I'd rate it as moderate pain, not severe, but it was very uncomfortable. 

The pain wasn't in just one part of my body. One minute it would be in my left shoulder, the next in my right elbow, then in my thighs, then my lower chest, etc. Often it would be in multiple places at once.

Most of the pain eased up by morning. I called the chemo nurse and was given a prescription for Tromadol. I hope the pain doesn't come back because among Tromadol's side effects are nausea, vomiting and dizziness. Ugh. 

I spent most of the morning and early afternoon catching up on sleep. I still get occasional pain. Just now my elbow started hurting.

In the meantime, the nurse said to continue taking Claritin and Tylenol. I might take Claritin for 10 days. I'll ease off on the Tylenol once the pain stays away. Next time I'll start Claritin on chemo day instead of waiting till the next day like my instructions said.

Oh, I got a slight nosebleed this morning too. I turned on a vaporizer in my room to see if it helps.

Pill Organizer

You know you're taking too many drugs when you need a pill organizer. On a couple of occasions, I couldn't remember if I'd taken a pill less than a minute after taking it. Then I'd have to count the number of remaining pills in the bottle to confirm. So I thought I'd better do something about it.

I'll continue with Zofran for one more day. I'm taking Ativan tonight too because it also helps with nausea. I haven't felt nauseated but am not taking any chances. Dexamethasone I stopped yesterday.

Claritin I'll take for about 10 days. The nurse I spoke to today said it's fine to continue taking it. He said if I don't take it and bone pain starts, Claritin won't work. I think it's Claritin that's making me drowsy today even though the packaging says it's non-drowsy.

I'm taking meds for high blood pressure. My oncologist recommended Vitamin D, so I got some gummies. I'm also taking L-Lysine capsules to see if they prevent mouth sores. The pills are so big. I hate swallowing them.

Neulasta and Bone Pain

I mentioned Neulasta before. Because chemo can reduce your white blood cells, increasing your risk of infections, Neulasta is given to help the body make white blood cells. For my first chemo session, a self-injecting patch called Neulasta Onpro was applied to my belly. A few minutes after application, it automatically stung me with a small needle. The needle then withdrew and left a thin catheter in my belly. 

Twenty-seven hours later, it beeped and started delivering Neulasta over a 45-minute period. It didn't hurt. I just felt a little warmth in the area. When it was done, it beeped again. There was as indicator to show that the patch was now empty. I pulled off the patch from the narrow end and could see the catheter. A tiny spot of blood appeared on my belly, and I cleaned off the area with soap and water.

Front of the cartridge showing it's empty.

Back of the cartridge showing catheter on top.

Neulasta affects histamine, inducing inflammation and swelling in the bone marrow and resulting in bone pain. The antihistamine Claritin decreases inflammation and swelling in the bone marrow and therefore reduces the pain. My chemo instructions said to start Claritin tomorrow, but I started it this morning and will continue for at least 5 days.

When Ma got Neulasta, she was in severe pain and needed Vicodin. My oncologist said she had never heard of pain that bad from Neulasta. But there are many reports from women who experience unbearable bone pain even when they take Claritin. Now I'm worried. Maybe I should have started Claritin yesterday and continue for at least 10 days. I can also take Tylenol. There's a study showing that Claritin and Pepcid AC may work together.

First Chemo Session

Short Version

I was at Stanford from 8:40 am to 5:00 pm for a blood test, visit with oncologist, and chemo. The drugs were given in this order -- Perjeta, Herceptin and Taxotere. I got slight diarrhea and cramping as soon as the Taxotere infusion ended. The only pre-med given to me was 8 mg Zofran in pill form. As soon as I got home, I took another Zofran and two Imodium.

Very Long Version

First thing in the morning, I applied EMLA cream on my port area around 7 am to numb it up. My appointment for the blood test was at 8:40. I still felt the needle when it was inserted, but it wasn't too bad.

My visit with the oncologist was at 9:30. My weight is down to 103. It had been 114 in early October when I first found my tumor. The weight loss is due mostly to anxiety, but I've also been fasting for my chemo.

My blood glucose was 170 mg/dL due to dexamethasone. That's very high. It's supposed to drop after I stop taking dexamethasone. I have one more day to take it.

Chemo was late getting started. Appointment was at 10:30, didn't get called til 11:00, then had to wait for doctor's orders, then wait for the pharmacy to fulfill the order. Also Mondays and Fridays are busy days at the infusion center.

The nurse gave me an overview of the drugs and side effects. Eventually she asked me if I worked in the medical field because I either asked good questions or already knew the answers. Several doctors and nurses have asked me the same question. I always confess I just google a lot.

I have to get a covid test before every chemo. They forgot to order one for my first chemo.

I wore a big shirt for port access. It worked out fine. I was thinking of making my own chemo shirt by modifying a t-shirt with a velcro opening on the right side for the port, but there's no need.

I was given only one pre-med -- 8 mg Zofran for nausea. I'm surprised they gave me a pill, not an IV.

Meds didn't start till 12:09. I thought I would receive the meds in this order: Taxotere, Herceptin, Perjeta. Instead it's the reverse order. Perjeta first for 60 minutes followed by 30 minutes of observation for reactions, then 90 minutes of Herceptin, then 60 minutes of Taxotere.

The needle in my port gave me intermittent mild pain. Sometimes shifting my position made the pain go away. Receiving the IV drugs did not hurt.

When I got the Taxotere, I put ice packs on my hands and feet to prevent neuropathy. I put an ice pack on my head to minimize hair loss. I chewed on ice chips to prevent mouth sores. Don't know if any of them will work.

As soon as the Taxotere infusion ended, I got stomach cramps and slight diarrhea. The cramps got so bad I thought I would throw up, and that was while I was still at the hospital. I took 2 Imodium when I got home.

Last step at the hospital was a Neulasta patch called Onpro. Chemo lowers your white blood cells, making you susceptible to infections. Neulasta raises your white blood cells. Then Onpro Patch automatically injects you with Neulasta 27 hours after it's applied. It feels weird applied on my belly.

Removing the needle from my port stung a bit. I didn't expect that. There was some slight intermittent pain for a few hours.

I took 8mg Zofran for nausea when I got home and at midnight. This was not in the list of instructions given to me. I had to ask the nurse. My instructions said to take Zofran every 8 hours starting tomorrow. I'm not waiting till tomorrow. I'm also not going to wait till I feel sick because Zofran takes 2 hours to take effect.

I've been trying my own version of the fasting-mimicking diet to help minimize side effects and was disappointed it didn't prevent diarrhea. I also didn't expect the side effect to start so soon. I thought it would happen a day or two later. I suppose it would have been worse if my stomach was not empty.

Lymph Node Biopsy Result and Gene Test Result

My lymph node is positive for cancer. That makes me Stage IIB instead of IIA. My chemo treatment does not change.

I also got the BRCA gene testing done because Ma was triple negative. My test shows I'm negative for the gene.

Plumbing Emergency

I was in the kitchen when I heard what sounded like splashes of water. Found two puddles of water in the entry hall and the hall leading to the kitchen. Then I saw that the coat closet wall was wet and had peeling paint. Same with the opposite wall for the utility closet. The floors inside both closets were also wet.

I called the HOA, and they sent a plumber right away. Half an hour later, two more plumbers showed up from another company. The HOA manager forgot to cancel the first plumber. But the first plumber was able to find the leak before leaving. The other two plumbers finished the job. Before any of the plumbers even arrived, one of the board members stopped by to check out the leak. 

My friend Sindhu will take me to chemo in the morning, then she'll come back to my place to let the plumbers in. They need to cut out the wet sheetrock and let the interior dry out.

I expect that the HOA will pay for the pipe repair, but I'm responsible for the sheetrock repair. I've opened a claim with State Farm, but my deductible is $1000. I don't know if the sheetrock repair will cost that much.

The plumber said he will recommend that the HOA replace my pipes with copper. The old galvanized steel pipes are pretty corroded. Ten years ago I had a similar leak in the same area. One good thing about this fix is that I now have hot water in the faucet in my master bathroom. For a long time I was getting only a trickle, possibly due to a blockage somewhere along the pipes.

I'm very happy with the service I got from the HOA, the board and the plumbers. I did mention that I start chemo tomorrow. I don't know if that made a difference in the speed of the service. But I got prayers and good wishes, and one of the plumbers said he's a cancer survivor himself.

Breast Cancer Support Group

I finally got around to joining a local support group online. It's not just for newly-diagnosed patients but also those already undergoing treatment. It was supposed to be only for an hour but lasted two hours. 

There were 10 of us, including the moderator, in various stages of treatment. One had just been diagnosed, some are already undergoing chemo, several already had surgery, one had surgery and doesn't need chemo, a couple are undergoing radiation, etc. 

A few people have tried fasting with mixed results. A useful tip was to try acupuncture if I get neuropathy. The group meets every Saturday afternoon. I'll try to join them every week. I'm sure I'll have questions for them as I undergo treatment.

Biopsy of Left Axilla

Today Stanford was able to squeeze me in for a biopsy of the suspicious lymph node in my left underarm. I had to hold my left arm, the one with a frozen shoulder, in an uncomfortable position for a while. I told the radiologist that my last biopsy was extremely painful. She gave me extra lidocaine. It took a while to receive the painkillers. The medical assistant and ultrasound tech distracted me by rubbing my legs and arm while I received the shots. It helped. But I probably shouldn't have watched the ultrasound screen showing the needle going into my underarm.

The procedure was a core needle biopsy. The radiologist took four samples. I was pretty numb, so it wasn't painful, but it was not a quick procedure. There was a clicking sound every time she took a sample. I probably shouldn't have watched the needle on the ultrasound screen.

The last step was to insert a nickel marker and tattoo dye in the lymph node. I felt the needle for the tattoo going in, but it wasn't too painful. I probably shouldn't have watched it on the screen.

After that they took a mammogram of the underarm area showing the marker. It wasn't too bad. The mammo tech got a good pic on the second try.

I was given a compression wrap to wear over my chest. I'll wear it overnight. It also helps keep the ice pack in place. My after-care instructions says to ice the area for 10-15 minutes several times for 24 hours. The painkiller was just starting to wear off, so I took some Tylenol. Overall this experience was so much better than my previous biopsy. 

My friends Ratu & Clint gave me a ride. I'm glad they insisted on helping. I could have driven myself but found the procedure stressful. Ratu also brought me a big box of groceries with apples, potatoes, carrots, celery, peanut butter, pasta and lots of canned goods with fruits and vegetables. I don't have to go shopping for a while. Thanks again, Ratu and Clint!

My chemo is scheduled for Monday, Dec. 7. I think it's finally going to happen this time.

Suspicious Lymph Node Found; Chemo Postponed

I was supposed to see the breast surgeon today, followed by an ultrasound, but the surgeon was running late. So I got the ultrasound before seeing the surgeon. This turned out to be a good thing.

The surgeon ordered an ultrasound of my left axilla (underarm) even though I've already had a breast mammogram, breast ultrasound, and MRI that supposedly covered the lymph nodes. Today's test was very targeted. Unfortunately it showed one enlarged node. The report says this:

In the left axilla at 1:00, 12 cm from the nipple, there is an abnormal-appearing lymph node measuring 1.2 x 0.5 cm (long by short axis) with an eccentrically thickened cortex measuring 0.4 cm.

This website defines a normal lymph node as: A normal sized lymph node is less than 10 mm with a thin cortex of less than 3 mm. In comparison, my lymph node is 12 mm long and 4 mm thick.

Four doctors had examined my lymph nodes before and didn't feel any enlarged ones. The first ultrasound and MRI also didn't show anything suspicious, although the surgeon today explained that lymph nodes can hide and not be visible in tests. She also said that she felt the enlarged node. I've always been suspicious that my lymph nodes were not involved, so today's finding is not a surprise. There's a possibility that the node is benign. But my gut feeling is it's positive. If so, my cancer stage will be IIB instead of IIA with a worse prognosis. Oh well.

Anyway, for the study I'm joining, they need a baseline and will have to do an ultrasound-guided lymph node needle biopsy (not a sentinel node biopsy) before I can start chemo. I'm waiting to see if they can squeeze me in tomorrow or Wednesday. The study coordinator wants to move my chemo to Friday, but I want to wait till Monday because I will have to restart my fasting. More on my fasting later.

At the appointment with the doctor, I learned a few new things. One is that if the chemo shrinks my tumor significantly, I might be eligible for a lumpectomy instead of a mastectomy. But if I get a lumpectomy, I will need radiation which comes with its own side effects. I will see the surgeon again after my last chemo.

Another thing I learned had to do with sentinel node biopsies and lumpectomies. The dye and/or radioactive tracer they inject to find the lymph nodes is extremely painful. There is a study where they use LYMPHOSEEK, and it's supposed to be a lot less painful. I might be able to join the study.

For lumpectomies, if they don't get a clear margin (no sign of cancer in the excised breast tissue), they will have to do a second lumpectomy, and this occurs at least 20% of the time. I thought the surgeon said LYMPHOSEEK will also improve the chance of getting a clear margin, but perhaps I misunderstood. I don't see lumpectomies described on the LYMPHOSEEK page. However, I saw this site that mentions MarginProbe that reduces the risk of a second lumpectomy by 61%. It also says that second lumpectomies happen 25-50% of the time. That sounds extremely high. I will have to ask the doctor about it. 

Another thing I was concerned about was the risk of getting breast cancer in my other breast if I don't get a prophylactic mastectomy of my healthy breast. What I had heard was the risk was 1% per year, and it was cumulative. So in 20 years, I would have a 20% chance of getting cancer in my other breast. But the surgeon said that info was from earlier studies, and she thinks the risk is 3-4% in 10 years. What's more concerning is that there's a higher risk of recurrence in the breast that does have cancer. Nevertheless 3-4% sounds too high. However, mastectomies come with their own complications and can affect quality of life. But so does worrying about whether you'll get cancer again.

I had asked the oncologist before whether I should be concerned about delays in my chemo treatment. I also asked the surgeon's nurse today. Both say that breast cancer is slow-growing compared to other cancers (perhaps with the exception of inflammatory breast cancer), and another week's delay won't make much difference.

I'm glad I switched to Stanford though. They're more thorough than PAMF, and their doctors are more specialized. They're not just general oncologists for all types of cancers and general surgeons for all types of surgery but breast oncologists and breast surgeons. They even have separate buildings for their Women's Cancer Center that offers advanced treatments for breast and gynecologic cancers.

Prepping for Chemo

I've decided to join the study at Stanford. This morning I got a call that they require a urine pregnancy test for the study even though it's been 1.5 years since my last period and I've done nothing to get pregnant!

My first chemo is set for Tuesday, Dec. 1. On Monday I have an appointment with a breast surgeon at Stanford followed by an ultrasound of my axilla. I hope they don't find any swollen lymph nodes. 

Tuesday I start off with a blood test, an exam by an oncologist, then chemo infusion. The infusion appointment is for 7 hours. I hope it doesn't take that long. The blood test and exam add another two hours. It's going to be a very long day.

This afternoon I had a long phone call with the nurse coordinator about what to expect from my chemo. There are so many drugs I have to take aside from the chemo. Here's a partial list.

Dexamethasone Take two 4 mg tablets the day before, day of, and day after chemo. This is for nausea and allergic reactions to the chemo.

Zofran Take 8 mg every 8 hours for nausea, starting the day after chemo and continuing for 3 days.

Compazine Also for nausea. Take as needed if Zofran doesn't work.

Ativan Take 1 mg at bedtime the day of and day after chemo and continuing as needed. For nausea and anxiety and to help me sleep because dexamethasone can cause insomnia.

I've purchased a lot of over-the-counter meds and other stuff for the side effects I'm expecting. I'll list the brand names, but I bought generics for most of them.

Constipation
Colace stool softener
Senokot laxative
Prunes

Diarrhea
Imodium
Bidet spray (yay!)

Mouth sores
L-Lysine
Lip balm
Baking soda
Salt
Dry mouth lozenges
Milk of Magnesia

Nausea
Mints
Pepcid AC
Aromatherapy inhaler for nausea
Barf bags

Fever
Thermometer

Pain
Tylenol
Advil
Aleve
Claritin (for bone pain due to Neulasta)
Emla (for the port)

Hair loss
Hairnet
Beanies

I think I'm ready. Maybe I should buy more toilet paper.

Port Surgery Follow-Up

I had a follow-up video call with the radiologist's PA about my port. It's healing but the glue is still there, and I was concerned about whether I could use the numbing cream on it when I go for my infusion. No problem, I was told. The cream can be applied over the glued area.

I also asked what drugs I was given during my procedure. It was 1 mg Versed and 50 mcg Fentanyl. I don't remember speaking during surgery and don't recall hearing any voices, but apparently I said ouch at one point, and they gave me another 1 mg Versed and 50 mcg Fentanyl.

Versed can cause nausea, and that's why I requested anti-nausea medication beforehand. I wasn't nauseated when I woke up, but as I said earlier, I got motion sickness from being transported from the OR to the recovery room and had to be given more Zofran.

I really hope I don't get nausea from the chemo. I read that people who are prone to motion sickness are more likely to experience nausea. I get airsick, seasick, and carsick. Ugh.

Chemo Port

I had my port placement done yesterday. Arrived at El Camino Hospital at 9:30. Surgery was supposed to be at 11:30 but didn't happen till 1:00 or later. The procedure was done by Dr. Fabio Komlos, an interventional radiologist at PAMF.

The IV was inserted around 10:40. It hurt for hours! The catheter was near my wrist. First the nurse tried a warm blanket around my arm to relieve the pain, but it didn't help. The ice pack was a little better, but it kept hurting until I got up to use the restroom. The pain went away for a while. When it came back, it didn't hurt as badly as before and was intermittent.

While waiting for the surgery, I had a long chat with one of the nurses. I thought I would have two incisions, but the nurse said the doctor does only one incision. The nurse gave the procedure a name -- the Fabio Maneuver. When Dr. Fabio Komlos came in briefly before the surgery and explained what he would do, I asked about the incision. The nurse piped up, "What's it called?" I answered, "The Fabio Maneuver." Laughter ensued.

I assume I was out during the procedure but felt brief pain twice, presumably when I got a numbing shot in my chest and when the doctor made the incision. They gave me oxygen and placed a sheet over my head. I didn't hear anyone talking, and when they removed the sheet after the procedure, there were only two people left in the room.

I had to stay in the OR for a while waiting for a recovery room. When the incision started to hurt, they gave me Tylenol. As they were about to wheel me out, the radiologist stopped by briefly, presumably to check on me, but all I remember him asking was, "Are you really 60?" 😄

When they wheeled me to the recovery room, I think I got motion sickness. They had given me 4 mg Zofran before the procedure and had to give me another 4 mg. The nausea was mild, but I didn't feel completely better till about two hours later. The Tylenol also didn't help with the pain, and they gave me 15 mg Toradol IV, an anti-inflammatory equivalent to 600 mg Advil. That helped.

I didn't get home till 5pm. It was a long day. My friend Sindhu dropped me off at the hospital and picked me up later. She made soup and brought spaghetti (it was so good) and stayed overnight with me. We played a board game, and I won twice, a rarity with Sindhu. I was in bed by 10pm, another rarity.

This morning I took Advil, but the incision started to hurt, so I also took Tylenol also. Even though the port should be lightweight, I feel its weight whenever I get up from bed. I suppose I'll get used to it.

They used glue over the incision. I should be able to take a shower. My discharge paper says no heavy lifting (>10 lbs) for two weeks.

Second Mammogram and Ultrasound

Stanford managed to squeeze me in for a diagnostic mammogram and ultrasound of my right breast. The radiologist said the tumor is ~1 cm with smooth edges. She thinks she can vaguely see it in my mammogram two years ago and that it's likely just another fibroadenoma. No biopsy is required at this time. She recommends another ultrasound in 6 months. I'm so relieved.

Addendum 11/20/2020

The radiologist at PAMF reviewed my MRI again and added this note to my test result. I think they thought the nodules at 1:00 and 10:00 were a single tumor.

A 1.5 x 1.2 x 1.3 cm nodule is noted at 1:00 right breast, 6 cm from the nipple, with T2 hyperintensity and imaging characteristics consistent with a fibroadenoma.  This was initially thought to represent the biopsy-proven fibroadenoma. However, on further review of older mammograms, specifically 12/31/2014, 2 masses are noted in the upper right breast on MLO view.  The more anterior mass is at 10:00 and represents fibroadenoma, biopsy proven on  2/11/2015 and with subsequent ability artifact from the biopsy clip on magnetic resonance imaging.  The more posterior nodule is at 1:00 and represents the enhancing nodule seen on breast magnetic resonance imaging, stable in size since 2014.  The mammographic stability and the MR imaging appearance are consistent with fibroadenoma.  If pathology confirmation is necessary, then ultrasound-guided biopsy of this nodule can be performed.

Gene and Covid Tests

I had my blood drawn today for the BRCA gene testing. The result will take about two weeks. As I mentioned before, Ma was triple negative, which is common in those with the BRCA mutation. Because I'm not triple negative myself, I doubt that I'll be positive for the BRCA gene, but it will definitely influence whether I should get a double mastectomy.

My port placement surgery is scheduled for Thursday, and the hospital requires a covid test three days prior. I was apprehensive about the test, thinking it might be painful. The nurse was reassuring, and the procedure was quick though unpleasant. I'm glad I survived it. 😝

Today I let Stanford know that I want them to handle my care. However, the earliest date I could get for a mammogram and ultrasound of my right breast is Dec. 4. This will further delay my chemo. The nurse coordinator will try to expedite the tests, but I'm not holding my breath.

I'm still undecided about whether to join the study. Chemo is so toxic that the fewer drugs, the better. But using fewer drugs and doing only 4 rounds instead of 6 runs the risk that the cancer cells won't be completely eliminated from my body.

Second Opinion

Went to Stanford today for a second opinion. The oncologist was Dr. Jennifer Caswell. I found out two things:

1. My tumor is Grade 3 (poorly differentiated), not Grade 2 (moderately differentiated).
2. My MRI shows a tumor in my other breast that was not caught by the radiologist at PAMF (my current provider).

My right breast has a fibroadenoma diagnosed in 2015 in the 1:00 position. Stanford says there's a second tumor in the 10:00 position. It's possible it's related to the fibroadenoma, or it could be another fibroadenoma, or it could be malignant. They want to do another diagnostic mammogram of my right breast and also an ultrasound. My previous ultrasound was for the left breast only, something that did not make sense to me. A biopsy might also be necessary. These tests will be done at Stanford, possibly next week.

I mentioned before that 6 cycles of TCHP was the treatment recommended to me. There is a study that Stanford wants me to consider that's 4 cycles of THP (no C for carboplatin). 

While I like the idea of having fewer drugs and fewer cycles with THP, it may not be as effective as TCHP. This study shows that the pCR for TCHP is 63% compared to only 55% for THP. pCR is pathologic complete response, the lack of all signs of cancer in tissue samples removed during surgery after treatment.

Another reason I don't want carboplatin is that it can cause leukemia. Dr. Caswell said it's less than 1 in 100, but that sounds too risky to me.

I could join the study, and if my tumor doesn't disappear completely, I can drop out of the study and get additional cycles of THP with or without carboplatin. I would still need a mastectomy, and if the pathology still shows cancer cells, I will need additional chemo. T-DM1 (Kadcyla) was the drug mentioned.

I have to decide if I should:

1. Transfer my care to Stanford, and
2. Join the study.

Due to miscellaneous problems I've had with PAMF (e.g., the missed tumor), I'm pretty sure I want to transfer to Stanford. I just have to decide about the study.

Mediport and Chemo Scheduled

I decided to stay with the new surgeon for the port placement because he'll be doing it under conscious sedation. My original surgeon uses general anesthesia, which seems like overkill for a minor surgical procedure. 

The surgery is scheduled for Thursday next week, Nov. 19. I will talk to the surgeon's nurse assistant on Tuesday and get my questions about the procedure answered.

My first chemo is scheduled for Tuesday the week after the port is inserted, Nov. 24. I'm so scared. 😢

Chemo Teach

I had a session today with my oncologist's nurse to teach me what to expect from my chemo. I will be given Zofran and dexamethasone followed by TCHP -- taxotere, carboplatin, Herceptin, and Perjeta. The nurse said the first infusion will take 5 hours, but it wouldn't surprise me if it's closer to 7 hours.

Based on my notes and the binder the nurse gave me, I have a long list of things to buy before chemo. Among the most important items are Imodium, stool softener, senna (laxative), Tylenol, a thermometer, and baking soda for rinsing my mouth.

Fasting During Chemo

A friend mentioned that fasting can help chemo work better. I started googling and found out that fasting can also minimize side effects such as nausea and mouth sores. Here are some anecdotes where patients who fasted before chemo reported a reduction in fatigue, weakness, and gastrointestinal side effects. 

A paragraph from this article explains what they think happens when you fast during chemo infusion.

It’s thought that fasting can help in cancer treatment because it signals healthy cells that it’s time to conserve energy as there’s low levels of nutrients around. In doing so, they switch to a quiet, maintenance mode. But cancer cells don’t listen to the body’s signals and so they continue to divide quickly, making them a prime target for chemotherapy. In this way, fasting can help protect healthy cells from the side effects of chemo while making cancer cells more vulnerable.

That same article says fasting had a similar effect as taking dexamethasone for nausea. Patients who fasted also had better response to chemotherapy. Here's the study.

Looks like I'll need to fast at least 48 hours before chemo infusion, then maybe 24 hours afterward. The study mentions fasting mimicking diet (FMD). Here's what I could find about FMD -- low carbs and protein, high fat. Calories at 40% of normal intake. Here's a sample plan, but I think it's for someone who consumes 2000/day. I'll have to make adjustments for someone who consumes ~1400 calories/day.

I suppose I should mention to my oncologist what I plan to do.

Frozen Shoulder

Back in June I woke up in the middle of the night with a lot of pain in my left shoulder. The pain continued and two weeks later, I realized my shoulder was frozen. Due to a previous bad experience with physical therapy, I decided not to do anything about it. Besides, I had a frozen shoulder before, and it resolved itself in one year without therapy.

But this time, because having a mastectomy can also give me a frozen shoulder, my surgeon said I'm starting off at a disadvantage. So he referred me for physical therapy, and I had the first session today. I don't know what caused the pain in my shoulder, but the therapist says it's not a rotator cuff injury. She evaluated my shoulder, took some measurements, and gave me exercises to do at home. I will see her at least three more times in person, then we'll switch to video calls. I'm not sure how I'll manage to mix my future appointments with my chemo, not knowing how I'll feel from the side effects of the chemo.

Oh, one more thing. Because it's my left shoulder that's frozen, and my tumor is in my left breast, and I've been doing too much googling, I started to ask my surgeon if it's possible the cancer has metastasized to my shoulder. Before I could even finish asking my question, he said no. 😛

Annoyed with PAMF

I'm being treated at PAMF (Palo Alto Medical Foundation), part of Sutter Health. Yesterday the oncologist's nurse called to set me up with an appointment to learn about my chemo treatment. But she also set my first chemo infusion for this Friday, Nov. 13, without checking with me. There are at least three problems here:

1. My appointment with Stanford for a second opinion is the same day.
2. I don't have the Mediport installed in my chest yet, and this is important because I blew a vein. You don't want the potential for another blown vein when receiving toxic chemo.
3. They require an echocardiogram before starting chemo, and my appointment for the echocardiogram is also this Friday.

My onocologist told his staff that he wants me to get started on chemo ASAP. So today they canceled my appointment for the Mediport on Nov. 20, my appointment with the surgeon to discuss the Mediport procedure, and the my covid test required before the surgical procedure. I had to talk to a nurse in a another department to have a different surgeon install the Mediport. But because I didn't want to do the procedure till after I talk to Stanford and then do a follow-up with my oncologist on Nov. 17, the first appointment I could get with the surgeon is Nov. 19, just one day earlier than my original surgery date. They put me through all this hassle to get the procedure done just one day earlier.

I called the nurse navigator to see if I can get my original surgery date back. I also need to clarify if I'm getting general anesthesia or conscious sedation. It doesn't make sense that I'll get general anesthesia for a minor procedure. If I can't get the original surgeon back, I want to at least meet the new surgeon before the procedure.

Haircut

I've been overdue for a haircut due to covid. My hair got pretty long, almost down to my waist. But since it would be messy when I lose my hair in clumps after I start chemo, I decided to get a very short haircut. Family friend Auring cut my hair and refused payment.

I haven't had hair this short since I was a child. I hate it!!! I'll be wearing a hat from now on until my treatment is over and my hair grows out again. It could take over a year.

Breast MRI

The breast MRI was done with and without contrast (Gadavist). I was worried about the injection -- actually an IV -- and was told by at least three people that it wouldn't hurt. Liars!!! The dye was a bit painful going in, then it got very, very painful. Turns out my vein exploded. The pain eased up but didn't go away entirely until the tech removed the IV.

When I got home, I got a call from the tech asking me to come back. I thought he would have to redo the test but no, he just wanted a doctor to check my arm. Doc said it was fine. I had only a small bruise. I also had a slight headache the rest of the day. Tylenol didn't help.

I got the MRI report that evening. The tumor is bigger than the ultrasound indicated -- 4.5 x 3.7 x 3.5 cm. I'm not surprised. I thought the tumor would be 5 cm.

But the good news is that the report says no suspicious axillary lymphadenopathy.

Signs of Stress

Lately I've been biting the inside of my mouth while I sleep. The backs of my hands also got very dry and scaly. I've since discovered it's eczema. Both the biting and eczema started right after my biopsy. I guess the painful procedure traumatized me a bit.

I went to the dentist to see what could be done about the biting. Because I wear a mouth guard, I haven't broken the skin in my mouth, but I'd like it to stop before I develop mouth sores. My dentist thinks maybe I open my mouth slightly before waking up and then bite down on the side of my mouth. She gave me mouth tape to keep my mouth shut while sleeping. Didn't know those things existed. Unfortunately they didn't help.

I decided to buy over-the-counter mouth guards for my upper teeth. I wore my regular mouth guard on my lower teeth. The combo seems to have helped.

The eczema is getting better. I'm using coconut oil and lavender essential oil on the backs of my hands. They don't feel as scaly as they used to.

Recommended treatment

My oncologist, Dr. Nguyen, recommended neoadjuvant chemotherapy, meaning chemo before surgery. Doing so will reduce the tumor size before surgery. He said that for most of his patients, the tumor disappears. I should notice a reduction in size as soon as the second cycle. But surgery is still required because cancer cells could still be lurking in the breast tissue.

Dr. Nguyen recommended TCHP, an aggressive treatment for my type of tumor because I'm still -- and I quote him here -- young. I guess compared to his older patients, I'm still young. These are the drugs:

T – Taxotere (docetaxel)
C – Carboplatin
H – Herceptin (trastuzumab)
P – Perjeta (Pertuzumab)

Taxotere and carboplatin are chemo drugs. Herceptin and Perjeta are targeted therapy drugs specifically for HER2+ tumors. I will get six cycles of the drugs given every three weeks. 

After the chemo, I will be scheduled for a mastectomy. I haven't decided yet if I should get a unilateral or bilateral mastectomy. After surgery, I will continue with Herceptin and Perjeta for a total of one year. Then I switch to an aromatase inhibitor because my tumor ER+. It's a daily pill taken for 5 years.

Painful Biopsy

I had a biopsy before and had very little pain. I was expecting the same thing for this biopsy, but that wasn't the case. It was a vacuum-assisted biopsy. The lidocaine was delivered by the device and stung a bit. The first few core sample didn't hurt too badly. But when the radiologist went deeper, I yelled in pain. She gave me more lidocaine and tried again. It still hurt! She said she'd given me twice the amount of lidocaine she usually gives patients and has never had it hurt like that before. I think she gave me even more lidocaine after that because I remember her trying again, and it still hurt.

She said she might have to cancel the procedure. I did not want to go through that again. Fortunately she switched to a manual device, and my pain level dropped from 9/10 to 3/10. I read somewhere that those vacuum-assisted devices are more painful. Also the tumor is in the more sensitive nipple area.

I was so sore afterwards. Fortunately cousin Nancy insisted on coming with me and drove me home

Aggressive Tumor

Ma had triple negative breast cancer (TNBC), an aggressive subtype. Fortunately, my cancer is not triple negative, something that had worried me, but I will get BRCA testing anyway because breast cancer patients with the BRCA1 mutation are more likely to have TNBC, and BRCA is heritable.

I was initially told I was PR+, but after I pointed out what looked like a mistake in the biopsy report, the lab retested my biopsy sample and corrected the report to say PR-. But the PR status doesn't affect my treatment.

ER+, PR-, HER2+ (estrogen receptor -- positive, progesterone receptor -- negative, human epidermal growth factor receptor 2 gene -- positive)
Grade 2 ((moderately differentiated)
Ki-67 30%
Size: 4.5 x 3.7 x 3.5 cm (MRI),  3.5 x 1.5 x 3.5 cm (ultrasound)
No palpable lymph nodes. MRI report said No suspicious axillary lymphadenopathy.

Just because the lymph nodes aren't bigger than normal doesn't mean they don't have cancer cells. Chemo should take care of that. 

HER2+ and a Ki-67 oof 30% makes my cancer aggressive. I'm surprised it's only Grade 2 instead of Grade 3. Maybe that's another mistake.

The biopsy report shows how they came up with Grade 2: The invasive component is organized in nests with minimal gland formation (<10%, Tubular formation - score 3). Tumor cells have oval to round nuclei with dispersed chromatin, inconspicuous nucleoli and eosinophilic to amphiphilic cytoplasm (Nuclear - score 2). Several mitotic figures are seen (Mitoses - score 2, 12 in 10 hpf). The overall provisional Nottingham grade is 2 (7 of 9). Lymphovascular invasion is absent. The in-situ component is solid with areas of necrosis and micro calcifications. The in-situ component is grade 2.

Staging is usually done after surgery. But based on the size of my tumor, I'm Stage II. If there truly is no lymph node involvement, then I'm Stage IIA instead of Stage IIB. Stage II is still considered early stage.

It's My Turn

 I figured that since Ma didn't get breast cancer till she was 82, I wouldn't get cancer till I was in my 80s. I was wrong. Here I am, age 60, diagnosed with breast cancer. Unofficially it's Stage II.

10/10    Discovered large lump in left breast.
10/13    Appt. with doctor.
10/21    Diagnostic mammogram.
10/22    Ultrasound. Radiologist said it was "very concerning." I saw the image and knew it was cancer.
10/23    Biopsy. Very painful.
10/27    Partial biopsy report said invasive and in-situ ductal carcinoma, grade 2.
10/28    The rest of the biopsy report said ER+, PR-, HER2+, Ki-67 30%.
10/29    Flu shot. Started process of 2nd opinion at Stanford.
10/30    Consulted with surgeon. Mastectomy required. Got CBC, liver panel, EKG tests, pneumonia & shingles vaccines.
11/3      Met with oncologist. Will get chemo before surgery. TCHP chemo regimen suggested.
11/6      Dentist. Breast MRI.
11/9      Optometrist, genetics counseling.

I will get a second opinion from Stanford on Friday, 11/13. A Mediport will be placed in my chest on 11/20. Chemo will start soon after that.