Chemo starting June 2018
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Does anyone have any tips for the eyes?
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Thankful to hear I'm not alone - hang in there ladies.
Today was the first day I re-joined my hiking club for a short, easy 5-miler. But then I needed a 2-hour nap! It has to get better...
I use a warm washcloth to gently clean my eyes and then a cool cloth to just calm them down for short term relief. I've heard there are eye drops that help but I haven't tried them.
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lulabella:
I have my 5th infusion next week. I have definitely had a lot more muscle fatigue/burning this cycle and even slight inclines really tax me.
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Washington48:
My mother's boyfriend brought me a cheap treadmill they had since I developed heat intolerance from the chemo and it had been too hot for me to walk outside. Unforunately it has a fixed incline and though it's slight, it's too much for me. But you can probably find a cheap used one without an incline.
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So, when I asked my MO about the leg cramps, and constant leg aches, she suggested stretches and a heating pad. My last blood work showed somewhat normal numbers for post-chemo, so nothing else left to try.
Any suggestions?
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I think the SEs are reflective of cancer in general. The helpful, but it's gone right or treatment is done from the people who don't get it. So & so worked through treatment and didn't lose their hair or have any problems - often not the same cancer, drugs, etc.
We are all individuals, with our own medical histories, allergies, drug regimens, etc. We are not whiny, our symptoms are what they are. My MO and I had this discussion the other day. No they don't tell you everything up front. Not just that they don't want to scare us, but not sure who will have exactly what. The point is to get us through providing as much symptom relief as they can and with as little damage to our body as they can. It is all about getting to the other side. Hopefully most damage is temporary and provides us with a chance to live a long life. But, recovery does take time. The hidden things like our bone marrow and blood counts take a long time to be normal. He told me just to be kind to myself and patient - do whatever it takes to get through.
This is #2 for me, and while it took time there is life beyond cancer and treatment. I saw my youngest graduate from high school, all 3 daughters graduate from university and one from grad school too, one marriage and my daughter bought her first house. Some sorrows of course as life is not all happy, but it is life. There are many things I'm looking to the future for this time as well.
To all the wonderful ladies on here listening, commiserating, caring, helping each other to get through to the other side. We are strong and we can do this.
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thank you, bgirl. knowing you've been through this before and, as you say, there is life on the other side is encouraging. it's easy to wallow in our immediate misery but to keep the future in mind is helpful; remember to be kind to ourselves and try to find patience to let things work out. stay strong!
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Yesterday my brother sent me a t-shirt that says “If God gives us what He thinks we can handle, then God must think that I'm a badass". I needed that.
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Thank you bgirl you made me cry...in a good way.
Thank you Rosie Red what a great Tee shirt.
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@lulabella, what issues are you experiencing with your eyes? My mom is on the TCH chemo regimen and she has been experiencing runny eyes that are discloring her skin. Are you experiencing similar side effects?
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DaughterFriend:
I have a runny nose and runny eyes. Mine is from the herceptin as far as I understand. It is not discoloring my skin though.
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hi DaughterFriend... my eyes are very runny and get tired and blurry easily. It hasn’t been discoloring my skin though.
I have had strange skin reactions and rashes elsewhere on my body that I haven’t had before starting chemo.
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DaughterFriend I have had the eye-drip discoloration -- but I'm on Taxol. It was during the early part, when I also was getting a steroid. Unpleasant, but it stopped and is fading.
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My oncologist jokes that Taxotere should be called Tax - O - tear. I was on Taxotere and am tearing the worst now 2.5 weeks out from my last infusion.
This last week when I thought I was done with chemo I've been dealing with tearing eyes and water retention. The tearing got worst this last week than it was during the whole time I was on chemo. My ankles and belly got really big and it was upsetting. It felt like chemo kicked my ass as I was walking out the door!
I finally called the on call onco Sunday night because it was worrying me. He said to weigh myself and see which direction it was moving. I have been walking a lot, drinking lots of water and putting up my legs in the afternoon. I lost 1.4 lbs in one day so it looks like it's resolving itself. I was up 7 lbs from 10 days ago yesterday so I think at my worst 4 or 5 days ago I might have been up at least 12 lbs. I was out of town with no scale.
I went in yesterday for my pre op appointment for implant exchange next week. My EKG was great but my baby resident doctor didn't want to make the call if I was ready for surgery and deferred to my oncologist. He's going to let me know if I should postpone my surgery after he looks at my lab work today or tomorrow. I'm hoping all is well because I'm ready to get back to work. Sick of being sick. Yes I know I need to be good to myself and let myself heal but just sayin.....
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rachelcarter35... I retained a lot of water after infusion #4. I still have two to go. For all of the other infusions I lost weight, but I ended up gaining a bunch (maybe 5 or 6 lbs) of water weight this last time. My belly got big too! But it’s going away. I hope all goes well with your surgery. What kind are you having (hope that’s not rude to ask!)
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Hello Rachelcarter36 and Lulabella: Does your MO think the water retention is from the Taxotere and Carboplatin? Or the hormone therapy? Caro
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My onco thinks it's from the Taxotere. I don't start hormone therapy till after surgery.
Ask away. I'm having my implant exchange with some pocket revision and maybe a little fat grafting.
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My tips for getting through TC Chemo: 4 infusions, every 3 weeks, or
"My Trip to Chemolandia; Yours May be Different"
This is what worked well for me, although it's just my body and my report. I'm 61 years old--these protocols and suggestions are what my oncology clinic, doctor and nurses all recommended, and if I veered off, I felt worse.
I did a lot of reading and research and question-asking, and found as many helpful (credible, authentic) resources as possible to help me along.
It felt like the tallest mountain I'd ever been asked to climb, and I tried to get all the best boots and socks and equipment for the journey.
Maybe some of what I recount here will help someone else.
****This is especially for a newbie who's looking for someone's account of getting through a TX like my protocol. Perhaps also my age---I started chemo in June 2018 when I was 60, now I'm 61, and our age and fitness level and other health issues are players in how we manage chemo. I was quite fit and active before getting put through the cancer and chemo extruder machine. Now I'm weaker, but determined to get strong again after chemo! Still have done 3 mile walks about 3-5 times a week, some floor exercises, some yard and garden work and some house projects. Nothing huge, just in small bits as energy allows.
MY LIFE
- I'm married, and I live in Portland, Oregon. I'm retired, as of just one year ago (after teaching high school full-time for 38 years) I was able to truly focus on taking care of myself during chemo. If I had been still working, I don't know how I'd have managed working during the first week of each infusion, when I was usually quite ill, but I could have managed the 2nd and 3rd weeks; I didn't always feel great, but I was functional most of those two weeks each time.
- My husband works full time, so I was alone about 12 hours each day, but had company in the evening and most weekends, although he has on-call manager responsibilities many weekends. I managed all my own care, with his support. Sometimes, I wasn't up to doing errands or shopping, and I had fill-in-helper friends and my husband who could do those things with enough notice.
- Our two grown children are established in careers and both live in California--both have flown up for supportive visits and stay in touch constantly by phone, but they're not close by, nor are my two sisters, who live 1.5 hours away, but all have visited and helped as they could. Friends and other relatives have reached out and been helpful in many ways.
- Usually, I'm an active hiker, biker, skier, amateur musician (singer and pianist), swimmer and traveler. None of that except the music this year, as I had foot surgery in February, so I've been managing my health ever since. The minute I got to start weight-bearing 14 weeks after a complex (5 joint fusions) surgery, I got this cancer diagnosis. So, 2018 has been Health Challenges Year.
MENTAL HEALTH:
- In many ways, going through chemo was as awful as I had feared. But, fear of the unknown is the biggest feeder of anxiety, so once IT (=chemo) started, I realized that I could do One Thing At A Time and get through IT.
- Breaking IT down into "getting through this day, managing this side effect" helped me.
- We are at the mercy of our diagnosis and treatment and prognosis. Whatever we can take back the reins of, be in charge of, will empower us. That means seeking out the Happy moments and going out purposefully to Hunt Joy.
- It helped me to celebrate the little successes along the way. Like, things that were treats that I felt up to doing.
- I tried to make sure to count all the Happys and put them away in a special pocket in my brain that I can dip into for the harder times.
- What feeds your soul? Mozart? Zumba? A rock concert? Your local professional sports team? Chamber music? Your rose garden? Your cats? Your bowling team? Whatever your Happies are, work them in, wherever they can fit.
- Plan small Fun Units into your life for the times and days when you can. A walk or lunch w/ a friend, chocolate bar day at work lunch with work friends, sit in garden, watch favorite show, phone call each week from best friend or sister or dear one in your life...SCHEDULE FUN to be happy things to anticipate and savor when you're able to do them. For me, it was a drive to visit my sisters out of town when they couldn't come to me but I had days when I could do that, or a weekly walking date with a dear friend, etc.
- Try to surround yourself with help and love and positive things.
- Try to turn off whatever is sending negative non-helpful vibes--avoid the people who suck your oxygen. YOU are the needy one right now, and you don't have extra energy to be sucked away by needier people. Don't watch that Super-Dark show. Watch the silly one that's brainless or whatever is Super Escape to you.
- Ask your supportive people in your life to give you specific things, like positive messages and loving chats where they listen.
- Find safe ways to share the hard stuff with people who are truly supportive--venting can be therapeutic (to a point!)
- Seek out what's nurturing to YOU and add that into your recipe for getting through this. The right people to confide in, the experiences that feed your soul, since you're managing so much difficult stuff. Maybe that means a daily treat (walk, talk w/ a friend, silly tv show) or a new app or dinner out on a Feel Good day.
- Maybe it means planning a treat for AFTER chemo is finished--a fun trip or outing to look forward to. Anticipation of future fun and healing and wellness is good medicine.
- The Dark Side: Sometimes crying is great. Therapeutic. Let it out. A stiff upper lip collapses sometimes. Weep with someone it's safe to share that vulnerability with. Admit the fears and the terror and the discomforts and the anguish and the horribleness when it's a safe place to do so, with a trusted person who can give you back the loving support you need at that vulnerable time. Partner, spouse, best friend, sister, etc.
- If overwhelming sorrow and darkness is taking over, and you're completely in a dark tunnel with no light, tell your doctor. Depression can be treated, and it can be part of cancer's reality.
- THIS FORUM has given me hope, perspective and support. By reading other people's struggles, I have a new and larger context for my own. I learn from other people's stories. They share their ways of coping, the hard stuff and the triumphs. Stories are a human need, and this forum connects us in a special way, with others who can understand, better than the people we live with, what we're going through. It's a solo journey, so everything we can do to build our support network helps, and this forum is one of those tools.
EXERCISE: get up and do something every day--walk around the block or around the house on worst days, other days plan exercise for best energy and do a short walk or work out as you feel able--it helps body manage chemo and helps boost endorphins (=feel-good hormones) and is overall good health practice
REAL LIFE STUFF HAPPENS EVEN THOUGH YOU'RE HAVING CHEMO: Our daughter got married three weeks ago. My husband's mother was admitted to hospice last week. We somehow fit it all in and Life Goes On, even though I feel as though I'm living on my own special planet. In fact, it's still Earth, and normal life continues to go on around me. I bought a wig for the wedding, but lo-and-behold, Cold Capping allowed me to wear my real hair to the wedding. The bodice of my Mother of the Bride dress needed a million alterations because I bought it before a bilateral mastectomy, then there were tissue expanders and then a port to work into the alterations plan, and somehow everything worked out. My husband had to fly to NH from OR last weekend, and there will be more flights ahead as his mother's situation changes, and we will get through it all, one decision and one day at a time.
PRACTICAL CONSIDERATIONS FOR SELF-CARE: How to do housework and cooking and shopping and yard work and laundry and errands when you feel rotten? By....
- Planning ahead and making lists for helpful errands or tasks that you can hand off to other people
- Letting go of what you can stand to let go of
- Paying for meals and grocery deliveries that you order online ($)
- Hiring help for cleaning house and yard work ($)
- Maybe a friend offering to pay for a housecleaning service for you once, or a yard helper, as a gift
- Asking friends to do specific tasks, especially during your bad weeks
- Teaching family members new skills
- Creating an online Meal train calendar or having a friend do this for you
- Asking a friend to organize other friends and teenagers with muscles to do good works and help out
- Putting out the word that once a week a friend could help by vacuuming the living room and bringing you a meal
- Asking all the friends and family possible to help with scheduling the children carpooling and other obligations
- Being proactive about setting yourself up to have fewer responsibilities at work and at home
- Somehow carving out time for you to be in charge of caring for yourself as your main responsibility. Easier said than done, but your energy has to be available for YOUR healing. Chemo takes a chunk out of whatever we start with as far as inner resources and physical strength.
- Scheduling appointments and errands and responsibilities for the days and hours that you KNOW you can manage to do things. Blocking out all other questionable times. For me, it meant reserving a lot of afternoons for rest, especially first week after infusion, when I needed naps or at least non-stimulus hours.
JUSTIFYING ASKING FOR HELP: The giver receives more than the receiver. Your friends will get their own warm fuzzies in their souls from being able to help you. We all pay it forward when we can, and now is your time to accept loving help and favors. Just say YES when someone asks if she/he can come over and drop off a meal or sweep the front walk or pick up 10 items for you from the grocery store or drop off the dry cleaning or walk the dog. Remember how good it has made you feel in your life, when you've been able to help others.
WHAT TO BUY BEFORE CHEMO STARTS: Using my oncology clinic's training class, this forum, my Oncologist Triage Nurse's recommendation list, and tips supplied by a good friend (who'd recently been through my same chemo regimen), I made my shopping list and went shopping. Stocked up on the foods I thought would help me, and the OTC medications that I'd need, based on all advice. Also pre-filled all Rx medications to get through a week or two. First week after first infusion, I was not terribly functional, and was glad I'd planned ahead, and cleared my calendar to just cope with taking care of myself.
WHAT TO TAKE TO INFUSION DAY?
- I was there from 5-8 hours. Snacks.
- Pad of paper + pen and questions each time written down to ask Doctor (whom I saw after blood draw and before infusion each time) and then there were always protocol instructions from him and from infusion RN's which I also needed to keep track of
- Nurses brought me drinks (tea, water, there was soda but I don't drink it) and there were cup-o-noodles and pretzels and popcorn and nuts.
- I pre-downloaded movies to iPad, as the infusion suite had TERRIBLE Wifi (!!!!!).
- They brought me pillows and heated blankets.
- I had a sports bag packed with my icing stuff + zip-up fleece.
- I always brought a sandwich + 2 prunes + some nuts + cheese + crackers + a banana, a yogurt, etc. More or less a lunch + more snacks.
DRIVE YOURSELF TO INFUSION? TAKE A FRIEND? HAVE AN ENTOURAGE? GO SOLO? WHAT'S IT LIKE?
I chose to do infusions on Mondays. Usually felt well enough by Friday (Day 5) to be semi-functional, and then could enjoy a weekend with my husband on Days 6 and 7 with enough energy to take a walk together, do something fun each morning before I got tired, etc. Worst days were Days 3-4, for me.
My husband took the day off from work to take me the first Infusion day, and he stayed with me until infusion started, and then picked me up at the end. After that, I did it all fine on my own--it's a short drive from our home. In the infusion "suite" I noticed people who had whole teams of support and others who were solo acts. Depends on circumstances and age and strength and distance. I wanted peace and no extra interaction, but many people had a spouse/friend, many people read books, watched movies, played cards, did handiwork..... There were private rooms with beds for very frail patients, but mostly everyone is in a large room, each patient in a huge recliner with space for a side table and space for the infusion bags/cart. Older people who had Not English as a first language often had another couple of generations of family members along for translating and support and wheelchair pushing. Extra chairs were available. There was a very friendly vibe in my infusion "suite," with everyone watching out for each other, asking about symptom management, nurses who watched out for all comfort and safety along the way, and everyone accommodating each other as far as personal space, etc.
HOW LONG IS AN INFUSION DAY: For some people, 3 hours. For me, 5-8 hours. Cold-capping is why I was there for so many hours. Also, my protocol switched for #4. First infusion was about 3 hours for the Taxotere as they watched for side effects. #2 and #3, they infused that one in 1 hours. #4, I had a 3-hour infusion of Taxol (replacing Taxotere because of a suspected reaction) and that made that whole day as long as #1 infusion day. Usually, #1 is the longest one and the other days, the infusions are a bit quicker.
- I had 9 a.m. blood draw.
- 9:30 met with doctor--usually 15-30 min.
- 10:15 infusion suite check-in, then I spent 10 minutes in the bathroom getting my cold-capping arranged and tightened on my head.
- 10:45 or so the first pre-meds went in (anti-emetics) and then infusion of chemo drugs started around 11:15 or 11:30 and took as much as 4 hours, and I had cold capping for 30 minutes BEFORE first chemo drug and 90 minutes AFTER all was finished.
- Sometimes left chemo clinic at 5:30 p.m. Always was there until 3:30 or 4 p.m.
PORTS/VEINS
- I got a port-a-cath after first infusion, due to arm vein challenges. It never was painful when accessed, just a bit of pressure. I wore button-down tops so they could get to it for blood draws and infusion. Surgery to implant it was relatively okay, soreness after insertion did last a couple of weeks, but it was tolerable on all fronts and my arms are saying Thank You.
- My surgical oncologist who did my BMX also performed the surgery to implant the port. I love her, and she and the anesthesiologist agreed to give me "twilight sedation" for that surgery, which was easy to wake up from. As far as day surgeries go, it wasn't the worst. It was a day surgery, which means I was at the hospital for 5-6 hours.
- Obviously, it's a big deal to get a port, and if arm veins are fine, no need, for a 4-dose treatment plan. I had recently (February) had another surgery with its many arm-vein uses pre-op and during operation, previously had axillary node and breast surgery on right side (so I don't allow pokes on right side to prevent lymphedema risk on that side), so in my case, left arm was having a hard time.
- Most people's veins can manage 4 infusions, and nurses have hot-pad tricks for getting access.
- When you have an implanted port, it's an implant/a foreign device if they ask you if you have any at airport security.
- You have to carry around a medical alert card at all times, since there are 3 types of port-a-caths, and if you were to be treated at the ER, the staff would need to know which type (each requires a different needle type to access the catheter via the port), and it must be accessed only by skilled RN's who know how to do the "heparin flush" to use it safely before accessing it.
ICING TO PREVENT NEUROPATHY:
I put my feet and fingers in ice during the Taxotere (final one was Taxol) infusions. NOT scientifically proven to help guard against neuropathy, but there's some anecdotal discussion, and I wanted to take no chances. Fingers in a tupperware container with ice + some water and a small towel on top, bare feet in 9x11 rectangular cake pan with ice, some water and a towel on top--infusion RN kindly brought me the ice, I brought my containers + towels. I did this freezy-plan just during the T infusion, and it was not fun. Sometimes brought them out to thaw, used my fingers to eat and use iPad and then chilled them again, etc. I'm a pianist and a hiker. Didn't want to take a chance on more neuropathy than necessary. There are freezable mitts and socks available online. Didn't seem worth the expense and trouble, since they don't last through a whole infusion, so you must swap and refreeze--not convenient to do during infusion day. Ice worked fine. And, who knows, this might be completely useless, but I did it any way, just in case.
COLD CAPPING - I used Paxman, and now at 4th infusion still have probably 75% of my hair, looks okay, can style to hide thinness. It's been falling out, steadily, but I have rarely washed my hair (doesn't look terrible--chemo dries it out a bit, so it really doesn't show that I rarely wash it), and I've babied it--not a lot of back-combing or heat at the scalp, etc when styling. After the chilled water starts circulating around your head, you have a freezing-cold scalp for about 15 minutes until your brain accustoms itself to this. I did breathing exercises and took a Lorazepam and Tylenol when I remembered, and managed that time fine, then wasn't uncomfortable after that.
EYEBROWS AND EYELASHES have gradually become less committed to adhering to my face. I have about 60% of usual eyebrows, and can fill in with pencil if I want to look normal, same with eyeliner to make eyes show up....Starting with 3rd infusion, the eyebrows and eyelashes started to thin. I have seen other people's posts describing losing them completely by 4-6 weeks after chemo ends, so I will not be shocked if this is true, but each treatment protocol has different outcomes on this. Head hair may continue to fall out for 6 weeks, I've heard.
OTHER BODY HAIR: not much, mostly gone
PAIN: I occasionally have had weird, sudden and brief pelvic-area spasms. Not debilitating, just startling. I've read that this can be something that Taxotere chemo patients do experience. It's just One Of Those Things. No other pain.
EYES: Occasional weird things, like watering or focusing challenges
HEARING: I have a slight hearing disability, and normally wear hearing aids--since age 57. My audiologist says that it's usual for hearing to go downhill due to chemotherapy (especially in someone who already has hearing challenges), and he's asked me to come in 1-2 months after hearing to be tested, as it's likely that my hearing aids will need to be adjusted.
CHEMO-BRAIN: My brain has felt slower. Same eventual functionality, but it takes longer to get at the solution. This emerged on TIRED days right away, even after first infusion. Now there are more tired days, as I've just had 4th/final infusion, and more tired = slower brain. Whether doing online banking, paying bills, managing complex decisions, or understanding long multi-step instructions, I have to absorb things more slowly. I write more things down, and I schedule my complex-brain-use for times of day when it's clearest. For me, that's been arranging music (notation software), and other computer projects. When I'm tired, brain is tired just as body is tired. A nap is usually the solution. I don't expect myself to manage complicated numbers-based things when I'm feeling icky, because that's also when my brain is slowest.
DIARY: I kept a diary every day of what I ate and how I felt and what medications I took to manage the side effects. For the 2nd and 3rd cycles, I looked at the one above (wrote it on my computer) and wrote any differences down, or things that worked better based on experience last time, and it helped me remember "Oh yes, on that day I need to...." And it helped me remember that on certain days I could plan to do something, if it's at x-time-of-day, but on THOSE DAYS I should expect to do nothing, etc. This was VERY helpful. Each "next time," there were things I'd forgotten, that worked or didn't work or were worth planning around, and I am very glad that I did this.
FOOD ALL THROUGHOUT CHEMO:
- I was instructed to eat 80-100 g of protein each day. I am an omnivore, so this wasn't a problem for me to adhere to. I printed out charts of how much protein is in all food, and except for Days 3-4 when it was hard to eat much of anything, I mostly really followed this. I happen to like all protein foods, so I made smoothies as a snack (bananas, yogurt, frozen fruit) with a scoop of whey protein powder, had cottage cheese as a snack (adding sea salt and paprika and pepper for Fun), had meat at lunch and dinner, and oatmeal/granola + milk for breakfast, or a scrambled egg, maybe added some ham.
- I avoid soy/tofu, since this is my 2nd ER+ breast cancer, and I just don't want to take a chance.
- I packed protein food for wherever I went, like nuts and cheese or a deviled egg
- I avoided a lot of raw food, salads in restaurants, salad bars, salads in bags. It's easier to digest cooked food. I'm immune-suppressed because of chemo, so I didn't want to chance some bad bag-o-salad, and if I knew the source and could wash it well myself, and my gut was agreeing to digest things, THEN I had a nice salad. If the cheese was made from pasteurized milk, I made a caprese salad. Summer is a sad time to skip raw food, but my gut wasn't as happy to manage raw food, and I didn't want to chance anything like food-borne illness during chemo. In a restaurant, if the side with my entree was coleslaw or something raw, I often would say "I'm on medication that doesn't allow me to eat raw food, can we switch that to one of your other side dishes that's cooked?" and they always accommodated me very nicely and we tipped accordingly. :-)
- My oncologist said that my high-protein diet helped my hemoglobin counts (I probably had red meat about 2-3 times a week) of course, and my energy. Chemo kills a lot of cells, and cells need a lot of protein to re-build. (Also true for radiation, which I've also had)
- Beverages: I found that acidic things caused me heartburn. No orange juice, I switched to white grape juice, and usually drank plain water.
- I avoided Simple Carbs. Just didn't waste food calories on non-nutritious food. I ate complex carbs, vegetables and grains, but almost no white rice, white flour, sugar, rarely alcohol.
- Weight has been stable--lost 3 pounds every time the first week, gained them back once I was eating regularly again. Probably lost a total of 5 pounds overall, though, because of not eating decadent meals out with alcohol, as we'd normally often done on weekends. Oops. We'll see whether they come back when my tastebuds are back and my gut is normal PFC.
- Enjoyed 2-3 alcoholic drinks during the third week, when taste buds were back, but didn't go crazy. Alcohol seemed to affect me faster/more even that third week, which gave me a clue that my liver had enough to do without complicating its work...
SIDE EFFECTS
I asked for the half-day-highlights tour of Chemolandia, but apparently my body signed up for the Double-Decker Bus No Sight To Be Missed Tour.
My oncology clinic had a Chemo Triage Nurse whom I could call during business hours with side-effect management questions. I could send an on-line message-system question to my doctor any time, and sometime during business hours my physician, or one of the RN's or maybe his MA would call me back with the answer. After hours and on weekends, there was always an oncologist on call, and I never happened to need to talk to one at those times, but I know they staff for that at my clinic. The message was that if I needed help, someone would help me.
I think I got a bit of every side effect I've ever heard of. Yet, there was usually a solution. Rather than being one huge AWFUL, that made it seem like a hundred irritating things, and I played Whack-A-Mole, and could usually figure out a way to handle each thing.
MEDICATIONS FOR SIDE EFFECTS--throughout chemo, but especially days 3-7 or so
- Anti-nausea meds: By Day 3, my infusion pre-med (I-V Aloxi--very long lasting, 72 hours or so) anti-emetic was worn off, so I started Zofran (Rx) 8mg 2-3 times a day, every 6-8 hours, and on the HORRIBLE DAYS (3&4 usually) I often took a Phenergan suppository (Rx) which completely knocks me out, and is a great way to survive the horrible days and makes night-time sleep work out great. Cotton mouth in the morning.
- CONSTIPATION: A very big deal for me to manage my "bowel care" Days 1-5. This is because the chemo drugs and also the (above) anti-nausea meds (both IV on chemo infusion day and the oral ones I take for the next week or two) do slow down the digestive tract. I take 2 Ducosate and 2 Senna at night, usually 2 prunes with lunch and 2 with dinner, usually also a dose of Miralax in the am if no BM. Hydration (2-3 qts water these days) is essential. I've had to resort to Bisacodyl suppositories a couple of times, and also once a Fleet Enema. Usually the other things listed first do work, and by 2nd week, I can ease up, but still have to watch for this. Occasionally, too many prunes, etc. and it's time for a dose of Imodium.
- INDIGESTION: this is common--sometimes Gas-X is the solution and calms down heartburn, or other heartburn meds. I ended up occasionally needing these OTC meds: gas (Simethecone), heartburn (Zantec), diarrhea (Immodium)
- Lorazepam/Ativan (Rx) I sometimes took one at night to be sure to sleep.
- I have Tissue Expanders which are uncomfortable, make my pecs feel tight, especially if I've recently had saline added/fills. I sometimes take Cyclobenzaprine either 5 or 10 mg at night to help the pecs relax and that helps me sleep well
MEDICATION MANAGEMENT AT HOME:
- A huge plastic box. Two, actually, one in bedroom upstairs and one in kitchen--bedtime meds upstairs, all day meds downstairs. Lists of what to use for what side effect, posted everywhere.
- A place to write down dosages and times, including keeping track of protein grams and hydration ounces. For me, this is the kitchen white board, or a legal pad---something easy to find and near the medications and near sight of a clock
- I still, 3.5 months after BMX struggle to open child-proof Rx medication bottles. I have to leave the tops off, husband has to open, or I have to use a wrench or crab-cracker. One more thing I have to plan around. Need to remember to ask pharmacist for the Old Person Easier To Open type top, but I never remember, because I forget that I am that Old Person. Oops, just looked in the mirror. I will remember to do that again before next Rx refill phone call.
- A binder that has a section for each part of my journey: diagnosis / surgery / chemo / side effects, etc.
- My husband is an RN (hospice nurse), so he's a walking encyclopedia of all the help I could possibly need to manage every side effect that comes up, but I also had the oncologist office as a resource.
- EVERYWHERE I ever go, leaving the house, I take a zip-lock bag of various things I might need if a side effect crops up inconveniently over the hours I'm gone. And extra food and water.
SUPPLEMENTS I'VE TAKEN THROUGHOUT CHEMO:
I got foot neuropathy Day 3, first infusion cycle. Naturopath and my oncologist had the same recommendation: Take L-glutamine (powder) supplement (I added it to cereal or yogurt each day, 1 t or so), also special versions of B-6, B-12, and also Alpha Lipoic Acid. And, Metagenics brand "Neurosol," 1 tablet per day.
These are all nutritional elements (amino acids, etc.) whose uptake and use in our body is adversely affected by (at least my regimen) chemotherapy, and their lowered levels are associated with neuropathy. There's a small but real percentage of post-Taxotere permanent neuropathy, so I am trying to do everything possible to prevent that.
NEUROPATHY: Always, Day 2-3 I start foot neuropathy. But, MUCH LESS since I started the supplements above. It's a tingling like numbness, but usually goes away by Days 10-14 and hasn't caused mobility issues or pain. Just a weird feeling like when feet get cold. Have not yet had any hand neuropathy, but I'm just on Day 2 of final #4 infusion cycle.
SUPPLEMENTS I AVOIDED: For various contraindication reasons, I was told not to take probiotics, any turmeric or extra garlic supplements. No curry for me.
DIARY OF DAYS -1 - Day 21
DAY -1:
- (Day before infusion day) Super-hydrate/Drink 3 quarts of water: helps the needle go in on infusion day, helps liver and body manage chemo, helps set up body to not be as constipated by the chemo drugs.
- 8 mg Dexamethasone Rx the night before and again 8 the morning of infusion. That can disrupt sleep, so the night before TX/Infusion Day 1, I also would take 2 Benadryl (OTC) and 1 Lorazepam (Rx) at bedtime, to be sure I slept well that night.
DAY 1:
- Drink 2-3 quarts of water (helps prevent constipation due to chemo drugs, helps body manage chemo
- Infusion day: I ate Cream-of-wheat for breakfast (easy to digest), packed a lunch (my infusion days were 5-8 hours long due to Cold Capping) that was normal, drank peppermint tea or water all day during infusions, ate a normal not-too-crazy dinner which I planned ahead and had ready for that evening--not a lot of cooking energy after long infusion day
- 2 prunes with lunch, 2 prunes with dinner
- Bedtime meds: 2 stool softeners, 2 laxative pills
DAY 2:
- Drink 2-3 quarts of water! Helps with constipation and helps body/liver/cells manage chemo poison
- Bowel Care Plan: 1 cap of Miralax in 12 oz water in the a.m. If needed, follow up with bisacodyl suppository (Rx) or Fleet enema (OTC--I have one on hand at all times, and needed it once), if constipation is severe, but usually the plan worked without those measures.
- Activity Level: I felt regular until midday, then very tired. For the first 3 infusions, I had on-body injector of Neulasta in the evening of Day 2, which meant that I took Claritin (OTC) once a day to combat its side effects for 6 days. If I stopped sooner, I had all-over body pain and back spasms.
DAY 3-4-5
- Taste buds are gone, they return around day 10-14. Makes eating less enjoyable.
- Food has to be Easy To Digest. Nothing complicated. Gut is slow, appetite is bad.
- Metal mouth--I got used to it. Yum, aluminum foil water! I really did fine just drinking regular water, but some people say coconut water or ginger ale is more palatable
- Nose hairs are gone, nose runs, carry kleenex---seems to always be better by week 2 or 3
- I do drink White Grape Juice sometimes when water just seemed icky--it kind of replaces water for me for Days 3-4 when it's hard to get any calories in, but that goes down nicely and also hydrates
- Mango all-fruit popsicles. Sometimes could eat one when I could eat nothing else
- Fruit-cups (the canned type in a plastic cup, like hospital food)--the Tropical Fruit cups were edible during these days when almost no other food was edible
- Mouth sores: First week, they're quite common, but never got terrible, just bothersome. Rinse with Biotene (OTC) or a soda/salt/water mix recipe from my oncologist's office helped calm them down and be less irritating.
- HOW I FEEL: Usually I feel awful for days 3 & 4 and part of 5, eat very little (chicken-rice soup, melted cheese sandwich, yogurt), usually rest and watch entertaining shows that fill the time (British detective shows, etc. on Hulu/Netflix, Amazon) or nap. Try to get up every few hours and walk around a bit, outside or inside, but mostly do not have get-up energy.
- *HYDRATION: still trying to drink 2-3 quarts of water every single day, down to 2 quarts by Day 6 or so. The super-hydration helps cells and liver manage chemo and get it to move through us, and helps us feel better sooner
DAYS 6-20
- Better every day. More energy. Weeks 2 and 3, it was possible to plan activities, just rest between exertions.
- Weeks 2 and 3 I could usually manage a half-day outing or a lunch with a friend, or a house or garden project for a few hours, and schedule some resting and sitting. Sometimes a short nap. Appointments, easier to manage (stamina-wise) for the mornings, same with errands
- Less constipation, but I still had to MANAGE it. This usually meant always having a couple of prunes with a meal, or also stool softener and laxative pills (2 each) in the evening, until it made me TOO loose, then I'd back off, and by Week 3 often bowels were normal. Or, once or twice I overdid the bowel meds, and I had to take 1 or 2 Imodium (OTC) to turn that problem around. This meant planning each day around my bowels, and that became New Normal Fact During Chemo. Third week USUALLY no constipation, but occasionally I'd be surprised, so always have to stay alert to how bowels are doing....
- Energy was always good in the mornings.
- First 2 cycles, I was feeling really good by Week 3: taste buds, pretty good energy, but still had to rest/sit down often.
- Third Cycle, not at all. Third cycle, my energy was low all the way to #4/Final infusion day 21, and I really had to manage my activities. Taste buds went away Day 2 and came back by Day 10 until Third Cycle, when the metal mouth really wasn't completely gone by Day 21.
- Icky-sick feeling didn't go away during #3 cycle, and I could knock it down by taking a Zofran 4 or 8 mg Rx once or twice a day. During 1st and 2nd infusion cycles, the icky-sick feeling was mostly gone by week 2 or 3.
- CBD oil (1 part THC - 15 parts or 8 parts CBD) did a good job of helping me with appetite. It's legal in Oregon, and comes in tincture (not very strong, but easy to use) and a syringe of tar-like goo (RSO) which I put in a dab of olive oil and ate off the spoon. Appetite was better, and it helped with that icky-sick feeling--made it go away enough to enjoy a meal. Doctor approved, said it was reported to be helpful and that there were no contraindications with my treatment protocol.
- Weeks 2-3 it was often reasonable to go out for dinner, but never first week. By week 3 I could enjoy an evening out with friends or a social event, if I planned food and rest and stamina carefully.
- Alcohol Weeks 2-3: Enjoyed the occasional beer or glass of wine or martini--not much, and not often, but maybe 2-3 total during those final two weeks. Didn't have a taste for more, and my body seemed to Not Metabolize alcohol as well (small amounts of booze affected me more than usual), so I felt that my liver was saying ENOUGH POISON, ALREADY, and I obeyed....
TODAY I'm on Day 2 of my final infusion cycle. I expect it to be harder than the other cycles, because the cumulative fatigue and side effects were all, indeed, more difficult during #3 infusion cycle. So, I've cleared my calendar and lined up my side effect meds, and I'm checking off my water intake and I'll get through it.
AN ADDED COMPLICATION is that on Day 8 of my 3rd cycle, I had a very serious hives reaction. It was treated with some days of a mega-steroid dose, and that worked. However, it made my chemo protocol change. My Taxotere was switched to Taxol for this final infusion, and I don't have Neulasta this time, which also might have caused the hives. I have to watch for hives for the next 10 days, and the plan is to put me on mega-steroids again if it does happen. It is one more reason that I'm committed to drinking lots of water; that will help flush things through, of course.
NOTE ON FUTURE HEALTH CHOICES AFTER CHEMO IS DONE: I asked my oncologist for future immune system recommendations, to prevent future cancers: His suggestions were
- Get regular exercise 30-60 min per day/stay as physically active as possible
- Eat healthily: avoid simple carbs, eat a variety of fruits & vegetables, whole grains, protein, complex carbs
- Limit alcoholic beverages to 1-3 glasses of wine per week, or 2 wine + 1 hard alcohol (neat or non-sugary might be best, avoid "sugary" mixed drinks---simple carbs are not our immune system's friends)
- Create a healthy life balance including activities which give joy and relationships which do the same/feed soul
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FINAL INFUSION was yesterday. They rang the bell for me. I am happy to have that done, but now I'm gearing up to get through these next several days of feeling Not Good. I've been super fatigued during #3 cycle, so expecting same + more so for this time. Cumulative.
I wrote down all of my best tips (previous post) NOT FOR my friends on this thread, because we're all in the same place, but in case newbies of the future search for my same protocol, maybe my tips and story will help someone....
My final cycle has the added excitement of my care team hoping that I don't have another hives reaction like I did at Day 8 after Infusion #3. For my final infusion, I was switched from Taxotere to Taxol, and given more mega-steroids than usual. Even so, I now have to watch for hives for the next two weeks. My oncologist is hoping to save my life with chemo, not kill me with anaphylaxis! Never a dull moment on our trips through Chemolandia.
My SUPER HYDRATION PLAN for Day -1 and Day 1 helped a LOT to manage my usual Day 2 constipation. For the first time, I probably drank 3 quarts of water each of those days, plus took my usual meds to manage constipation, but never have had it all WORK OUT SO WELL. SUCCESS. Nice to have a safe place to share that random factoid with people who understand. 
Warm wishes to everyone to manage whatever they're going through at this point.
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HikingLady:
Very nice posts. Thank you for sharing and congradulations on finishing chemo!
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HikingLady - congrats on your last infusion! Hope the SE’s are minimal.
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HikingLady, congrats on finishing chemo! My last infusion is next Wednesday, so I already started the countdown.
I am amazed you are able to drink alcohol on chemo! A sip of wine last month almost caused me to call 911 - I had a horrible burning sensation in my mouth and throat. Had to eat a container of yogurt to ease it a bit. Not trying that again anytime soon! But I am on a DD regimen with both meds and only 2 weeks between the infusions
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HikingLady Thank you for all of your good advice. I think you did a really great job. I think of all those newbies who could so use this. Ringing that bell is such a moment of celebration. Congrats! I got to on August 17th.
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rachelcarter - I'm exactly on the same schedule and SEs. I gained 12 lbs last week and I was in distress - my pants did not fit. My ankles and feet are all puffy and I'm calling my MO tomorrow! Hope you continue to drop the water weight.
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Thank you HikingLady!!
Congrats on finishing your trip to Chemolandia haha!cefinkce...i'm not on hormone therapy, so I don't think it's that. I didn't talk to my doctor about it because he's not super responsive, so I keep my questions for the emergencies. I ended up spending the next couple of days in bed not feeling well (VERY tired) and just hydrating a lot and then started to shed the water.
It's strange how it's happening to us all at the same time!
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Well my infusion has been delayed for a second time. I have thrombocytopenia again (low platelets). I fasted for no reason. I took the dexamethasone for no reason. I missed my grandmother's 90th birthday for no reason. My mother came out for no reason. I won't have results of some tests in time for my surgical consultation for no reason, but it sure beats bleeding to death.
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Hiking Lady - congrats to you and I'm also a little bit jealous. I think we started around the same time and I wish I was done too. 8 more weeks of Taxol to go. Last infusion November 2 - I know I'll get to ring the bell eventually.
WC3 - sorry for the delay. Much as a week's break sounds good, it sucks to delay treatment and having to move the finish line. After chemo you want to be as healthy as possible for surgery, so hopefully they can find the right timing for you.
Can't remember who was mentioning heart palpitations earlier on the thread. Hope you are feeling better. I just wanted to say mine have improved after finishing the AC portion of the chemo a couple of weeks ago. Had a repeat echo cardiogram before starting Herceptin with my Taxol chemo and it showed that the right ventricle (pump) was not relaxing sufficiently - my MO said that it was probably due to the A chemo and was likely causing some symptoms combined with the Neupogen shots.
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WC3 - I sympathize with your frustration - I was supposed to have round 4 this past Monday but I’m delayed a week due to low platelets and neutrophils - I’m hoping I’m good to go this next Monday - I was also delayed twice for my second infusion - it’s just disappointing when you have your chemo end date planned out!
HikingLady - congrats to u!! As long as the rest of my infusions go as planned I’ll be done oct. 22 - I can’t wait!!
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Hiking Lady -- Oh my goodness -- SUCH a great post! I'm going to tell the ladies about it on the "Starting Chemo in August" page. Thank you for all of the advice. I'm on day 2 of Infusion #2 -- and am now cramming down more water!!! I was drinking 1 liter of water per day (plus misc. liquids (tea, coffee, etc.), and thought I was drinking enough. Again, thank you for the advice, and congratulations on finishing #4!!! Carol
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It's a go - implant exchange next Thursday. I've lost an average of 1 lb of water weight for the last two days. I'm hoping its trending that direction. I have 5 more to go to be where I was before I started to retain H20. I'm continuing to walk, Yesterday I fit in two. I'm drinking lots of water and putting my legs up in the afternoon.
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