Chemotherapy Infusion Delay

For those of you following my breast cancer journey, know that I’ve experienced a chemo side effect of burning hands, feet, and any other areas of my skin that gets pressure or friction from an outside source. It's called hand-foot syndrome.

I won't name all of the other body parts involved... 

I’ve been a total lump this week doing nothing. Hard to walk very much and the exercise bike is out. I even have a problem sitting for very long in certain positions.  The effects are still pretty uncomfortable by the evening. I talked previously about some of the many things I’ve tried to mitigate the effect in a previous post.

I was supposed to get my 10th Taxol infusion this week. However, my Oncologist decided no infusion. I get a 1 week break! Next week he’ll either decrease my chemo dose and/or increase my infusion time from 1 hour to 2 hours or put me right on the 2nd series of infusions. i was concerned as I was scheduled for 12 Pacxilaxtol infusions. 

However, my doctor said not to worry that 12 doses were not empirical. He's had patients only make it through 4 or 5 sessions. Let’s hope my body recovers so I can get back on track next Monday, or I may jump right into the Red Devil (Adriamycin)

No I Don't Have Hoof and Mouth Disease!

The burning and itching sensation on my hands and feet were getting stronger so I did my homework. 

Seems I have Hand and Foot Syndrome or Palmar-Plantar Erythrodysesthesiak. Say that fast three times!

It's a side effect of my chemotherapy. Paclitaxel  is one of the chemo drugs that cause it. Lucky for me my next series of chemo with Anthracycline (Doxorubicin) can also produce this effect; so I can't expect any relief soon.

This site has a pretty good explanation of the syndrome and some suggested ways to relieve the symptoms of Hand-Foot Syndrome

The night after my ninth infusion I couldn't sleep. My whole body burned as the little capillaries under my skin died off. Their screaming must have been keeping me awake. 😱😱😱

 I just ordered a full-length icepack that will unfold like a blanket. Ice packs do at least give me some relief. Since friction aggracvates the symptoms, wearing socks does seem to help. Not what I planned to do in the SC heat, but I have air conditioning so I'm not complaining.

Also my skin hasn't started to blister or peel yet so that's a plus. Hoping to avoid that. I just ordered a while passel of cooling sprays I'm going to try to see if any of those help.  

Ugly Burning Left Foot

Ugly Burning Right Foot

Spoiler alert! I may have to look forward to Hoof and Mouth Disease, actually just potential mouth sores in the next round of chemo. Hey, look at the bright side, some burning, itching, or other gross side effects now. It sure beats doing nothing with the potential for a bad outcome in the future.

Meanwhile, I spoke to someone today who has an unrelated chemo side effect of burning feet. Her doctor told her the sugar she was eating was aggravating her condition (caused by a back issue). 

So, do I give up blueberries on my cereal every day and an occasional sweet to see if it helps or, Nah, who am I kidding, I need my little pleasures right now...

Breast Cancer Tired But Sleepless?

Every week after a new infusion I feel more and more tired 🥱. Everyone says relax, read a book, watch tv in the middle of the day, do nothing. Yeah right. I try, I really try but there are some things I have to do. Luckily we’re able to hire someone to clean every few weeks, but there are some things that must be cleared daily. We’re two very messy people, clutter could be both of our middle names.

I seem to have lots of phone calls and computer work to do. We’ve only been in this new house for a little over a year and there’s always something I’m having done or making sure it’s done right. 

Then there are the insurance forms and medical bills to handle. We have complicated insurance so I’ve spent a lot of time calling, clarifying, paying, uploading documents, etc.

Regardless, I can handle all of it as I usually do with some breaks in between. 

Granted I’ve had sleep issues for about 31 years. That’s right, my husband used to be a world-class snorer. Eventually, that led to a CPAP machine. Not so bad if you have rugs and soft window treatments.

Now we have a smaller bedroom, no rug, and window shutters. Looks great but the sound seems to carry. Oh yes, we no longer Iive on a farm with no neighbors in sight or within hearing distance. Now we live in the suburbs in a neighborhood with very little space between houses.

I also have some past medical issues with sleep movements but stopped taking that medication last year. I also have an issue with repetitive sounds…

So maybe I’ve covered some of your issues or maybe you have no sleep issues. However, don’t be surprised if one of your side effects of cancer or your infusions is insomnia. I had my sleep issues under control. We have a new remote-controlled mattress. I always wear a sleep ask and I’m serious when I say this: I either wear these heavy-duty construction ear muffs, some lighter-weight electronic sleep earplugs, or at times sleep in a different room from my husband. I've even resorted to sleeping pills since my side effects increased.

I’m not particularly sleepless over cancer. I think about something I should get done the next day or about nothing at all, I would just lie awake the night after my infusion or sometimes any night really. I recently tried sleeping pills. I’m playing with the dosage with my doctor's help. I need a stronger dose that first night and can go with a half dose the rest of the week.

However, not sleeping for whatever reason is Not a good thing. I know it’s important to rest in between treatments. After a week of pretty good sleep, several of my blood levels that were dropping steadily each week bumped up a bit! I’m mostly just over the line into acceptable levels! The only thing that really changed this week was sleep!

So whether it’s industrial earmuffs or a mouth plug for your spouse, get some sleep!

Are Your Hands Burning after Chemotherapy?

I read about different skin irritations that you can get from Chemotherapy.  I have delicate skin so I expected to have run-ins with some skin reactions. With Triple Negative Breast Cancer treatments, I'm expecting all kinds of adverse reactions as the weeks progress. 

After my first infusion, I did feel tingling in my arms and legs that lasted all night long and kept me awake. I found a solution to that by using Cold gloves and cold socks. I keep them in the freezer, and take them in a cooler with me to my infusions. Once the infusion begins, I put them on and I'm good to go. No more tingling-or so I thought.

The new sensation wasn't exactly tingling. It was more like burning and itching. I started to feel it in some spots on my fingers, palm side after the fifth chemo infusion. I mentioned it to my Oncology PA. She said some people reported that sensation on the tips of fingers after typing or the palms of hands if doing something physical. 

It's a sensation that comes and goes. It's more prevalent after I've been fixing a meal, opening a jar, etc. I'm feeling it more often as I do things around the house. I find myself scratching the palms of my hands. The itching and burning aren't intense but are still there. 

You can see from the photos that different areas are irritated based upon what activity I've undertaken. I've had the sensation pop up in my lower back, under my thighs after sitting on the edge of a wooden chair for too long, etc.

                     

I'm going to try to keep the cold gloves on longer this week. I got such a good pair that the frozen part is really thick and cold, and lasts a long time. I was keeping them on one hand and switching off so I had my hands free, plus they're really gold. Maybe I'll leave them out a bit before my infusion starts to I can keep them on longer. 

Chemotherapy and The Great Hair Loss

A friend of mine opted for an expensive cold capping treatment so she wouldn’t lose her hair from chemotherapy. 

If I were younger, I’d probably care more but I was ready to lose it, or do I thought.

My Oncologist says I might or might not lose it during the first series of treatments but guaranteed I’d lose it for the 2nd round. 

I had my hair cut extra short, put my hairdresser on alert, and sat back. I have fairly thick hair so I figured it would probably only thin out some in the beginning. 

To my surprise, the morning of my third infusion, it started to fall out! The shower drain was full of my hair, 

My hair was pretty short and wavy so I didn’t usually brush it, just ran my fingers through it. That morning it came out in my hands when I ran my fingers through my hair!

I dealt with it another few days and then made an appointment with my hairdresser to cut it all off four days after the fallout began.

Now that it's gone, it's a bit weird. I don't see myself as much as my husband so I don't wear a headscarf when I'm inside in the SC heat. He doesn't care. I'm often taken aback a bit when I do see myself in a mirror. 

I expect to be completely bald with the next series of infusions. Meanwhile, my hair is really short and any fallout is much easier to manage.!

Getting Ready

My supportive angel

Shave it off!

Layer by layer she kept going

Scar from falling off a horse

Close enough

How does this work

Let the expert do it

We did it together

The new lighter me

 

Chemotherapy Tricks

 Things happened so fast for me. I barely had time to think about having Breast Cancer. I had so many appointments, immediate surgery, schedules to manage, wondering what I need to do to recover from surgery, backup surgical bras to order, will I go bald, and do I need to order caps in advance to cover my head, just to name a few.

I'll try to touch on many of these items throughout my blog posts. 

Here are just some tips to be prepared before your first infusion:

1. Get an implantable port

I was able to schedule the insertion of a port prior to my first infusion. Granted, it was the morning of, but so worth it to me to not have to mess with IV needles every week! Here's a nice explanation of an implantable port from the Sloan Kettering Website. Ask your doctor if you need one. I did because my particular chemo infusions can be pretty toxic to my veins. Also, my treatments will go on for at least 6 months. It also made the weekly blood tests and any extra blood tests any other doctors needed so easy! At my Cancer Center, they mostly use power ports. 

2. Buy cold socks and cold gloves 

These are readily available online. Just search for chemotherapy socks or gloves. Wear them during your infusion to ward off tingling sensations. I had them in my legs and arms all night after my first infusion and didn’t sleep a wink.

Since wearing these each week, the tingling sensations were greatly reduced. (I've since encountered another problem with tingling). I cant go without these and have worn them during the week too!

3. Buy a Chemo port shirt. 

Again, readily available online. The one I bought has zippers across the shoulders, at the neckline, part way down the front, and across the top of each breast. It has long sleeves which are great even in summer in cold hospital rooms.

The nurse can take your labs from your port, which you give before every infusion. With the shirt, the access tube extends through the zipper opening. She takes my blood and leaves the short access tube in. I can see my Oncologist or go to a waiting room or chemo chair before being hooked up to my infusion. 

The nurses have all commented on my shirt. Even the receptionists have commented about how pretty it is!

Regular shirts with openings in the front work, but everything’s not as easily accessible as it is with the chemo shirt. I have one friend who didn't know about these shirts, She was stripping off her shirt with each infusion and freezing. I bought mine from a Small Business called Port Fashions. They sell their shirts for Women and Men on Amazon and Etsy

4. Bring a blanket, drinks, and, snacks with you. 

The Chemo group may have warm hospital blankets or small bottles of water or juice handy. However, it’s not the same as having a snuggly throw blanket or quilt from home.

Their small bottles are not enough to keep you as hydrated as you need to be on infusion day and throughout your treatments in general. If your infusion happens close to lunchtime, you can get hungry. They may have crackers or an occasional kind soul drops off fresh fruit or bagels, but if you're really hungry, you need nourishments. I've seen patients bring in meals that need to be microwaved. I tend to take nuts, juices, even Ensure. ANything to keep up my nourishment and eat or drink without too much fuss.

5. Bring headphones, AirPods, etc. 

You can’t spend the whole infusion time reading facebook posts! If your hands are covered with cold mittens, you can't scroll very easily. Make it easy to listen to audiobooks, music, etc. You can borrow audio books from your local library. 

6. Buy REAL Silk Pajamas and/or a Silk Pillowcase

OK, so this last one is especially for those with sensitive skin. A real silk (not satin) nightgown, P.J's, nightshirt feels great on sensitive skin– IF and this is a big IF, you wear the nightgown inside out?!?

I mention this because I bought a silk nightgown that feels great on the outside, but is not as nice on the inside. The silk pillowcase I bought is nice and silky on the outside. They are great for those sensitive bald heads some of us are dealing with nowadays. 

I also just bought real bamboo sheets and they have every silk feel to them! They also help to keep you cool–a problem I now seem to have during chemo. 😅 I'm also going to order a nightgown made from bamboo. 

Hopefully, these suggestions will help get you through your chemotherapy infusions regardless of your particular form of cancer.

What Is TNBC?

There are several websites and articles that will explain Triple Negative Breast Cancer (TNBC) in greater detail than I can here.

TNBC doesn’t have receptors for estrogen and progesterone hormones, and the HER2 (human epidermal growth factor) protein. Most breast cancers are positive for one or more of these. Since it doesn't have any positive receptors for those 3 categories, you end up with Triple Negative.

TNBC only appears in 10 to 15% of breast cancer cases. Its usual targets are Black or Latinx women, under 40, with a BRCA gene mutation. A BReast CAncer gene mutation indicates over a 50% chance you’ll develop breast cancer. 

Without hormone receptors or HER2 receptors to target, TNBC is tough to treat. It spreads quickly so often surgery first, followed by aggressive chemotherapy. Depending on how large the cancer is and if it’s spread into the lymph nodes, radiation may be included in that package. Some patients may also need immunotherapy.

There are no guarantees with a TNBC diagnosis, but with more aggressive treatments used recently, you don’t read articles labeling it a death sentence published by the NIH as recently as 2017. 

So if you are a lucky winner in the TNBC lottery, things are looking up!

TNBC often recurs within the first 5 years after diagnosis and any surgery or treatments you undergo. Most other breast cancers could recur much later after 20 or 30 years. TNBC may recur in another location like your bones or brain.

However, with more aggressive treatments, you can reduce your chances of reoccurrence. Remember, nothing is a guarantee, so this is a personal choice as to how much you are willing to endure to ensure you don't have to deal with this nasty bugger again!

Talk to your Surgeon, Oncologist, Radiologist, Priest, or Shaman. Pray on it. Do your homework. The choice is yours as to how to handle this roadblock life has thrown at you. 

I won't be your personal cheerleader, but I can give you some idea as to what to expect, how to deal with what you may experience, and/or maybe even a laugh along the way. Join me on my journey into Triple Negative Breast Cancer....