Starting chemo April 2019
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just my experience: I was worried about totally crashing off the steroids, bt that didn't happen. I did end up feeling more tired in the next few days as I've said (not 100%, not able to go to gym) but not in a dramatic way.
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hi everyone, just wanted to pop in and give you all some encouragement. I'm part of the April 2018 thread and was in your shoes last year at this time. There will be good days and not so good days but take them one by one. I could not have gotten through without the help of my group. Be good to yourselves. Give in and rest when your body calls for it. You will get through this. Best wishes to each and every one of you
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Hi all, Had my first TC on Tuesday. Days 1-3 were good. Meds work great.
Today was the first day without steroids.....oh man.... no energy at all. Didn’t get dress, stayed down most of the day. Did walk slowly on my treadmill for 20 minutes, but it was hard. I didn’t want to take more nausea meds, but felt a bit queasy most of the day. Will be interesting to see what tomorrw brings.
Hang in there everyone.
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I get my port put back in on Tuesday. Still have to do my chemo class, but Wednesday is looking more and more like a go for me. Book released yesterday (I'm an author) so what a relief to get that off my desk first and colleagues are helping with promotion for the launch so I can focus on getting my butt into treatment, LOL. I didn't work during treatment last time, my brain got really foggy really fast and the word-dropping...Writing was just too frustrating. Fortunately, royalties stream in whether I'm actively writing or not! I'm making plans for fun projects through chemo this time. Lots of knitting and crocheting and (as long as my vision holds up), diamond painting is fun and relaxing too.
This is going to sound crazy, but I'm really looking forward to the steriod-induced shopping sprees. I'd get horrid insomnia on my day 3 last time and would spend that night browsing online. Bring on the suck, baby. My debit card is ready to strut. LOL
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I get my port in Monday, see the shrink Tuesday (for sanity), meet with oncologist Wednesday for outline of chemo plan then heading to Florida for a weekend getaway Friday (for sanity) - back on Monday - so guessing I'll start chemo Tuesday 4/16 or shortly thereafter. Still dreading it. Trying to get my mind in fighting mode. Drinking lots of water and trying to eat the best I can now to get in gear. Shopping headcovers and just sigh every time I do. Don't wanna go there.
Thank you everyone for sharing. It's helping me prepare for what's to come. Keep on keepin' on.0 -
Hi Girls, Sorry I haven't been on lately, I have been really busy getting everything in place before chemo starts. I was good go catch up on every ones post. For the most part it looks like everyone is doing pretty good with their first few days of chemo, I hope it continues and I hope I feel the same. My biggest fear is nausea, gaining weight, and losing my hair. So next week I am going to focus on my bad eating habits, and on next Sunday I am having a hair transformation party...I love my hair and I decided that I'm not going to let this cancer control my hair by falling with the chemo drugs, so I am going to donate my hair and rock my baldie!!!
I am going to wear really cute beanies, Harley dew rags, and hats. I think I am addicted with buying them, I have about 20 of them so far. lolGood luck to all of us, We got this! My treatment starts on April 15th.
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Dallas105 (from a Denton girl)...nausea was my biggest fear, as well. After the night of infusion, I've not really had any at all. Luckily for us, at this day and age, they are very prepared to get ahead of nausea for us.
I had shared with the group the other day that my first night was pretty miserable. Luckily, after that first night, it's been so much better...with the exception of the migraine from hell. I've not had any nausea (been taking my meds on a good schedule), but I've had a pounding headache since I got home. My doc thinks it may have started with the Aloxi on infusion day, so they're going to switch me to Kytril next time. They actually called in a migraine med for me on Thursday, but my pharmacy put it on hold without calling me. Ugh. I finally got it this morning, and I actually feel almost back to normal...my head is still a little fuzzy...but considering all of the meds I'm on, that's not a surprise.
I got out and walked a little every day since Friday, which has been a big help. Today I cleaned my bathroom and did some laundry...a functioning member of my household again!
I'm looking forward to working tomorrow, finally, which I'll be doing from home this week. I've bee rinsing with saltwater several times a day, plus eating the ice chips during the AC push at infusion...luckily no mouth sores yet! Lots of water, some ginger ale and protein shakes have really helped. When they say that protein is a must, that's no joke! I immediately feel better after I eat some steak or chicken (in small quantities). I've even had a few urges for a burger, and the Sonic jr cheeseburger hits the spot every time!
Good luck ladies...we can do this!!!
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Update..... yesterday was a totally in bed day. Felt queasy and slept a lot. Took a Compazine to fend off queasy, but it didn’t really just made me sleep. Tried to sleep at night with no meds,,,,got up at 1:30aM for Ativan. Wow, what a difference a day makes. I can actually feel the fog lifting and queasiness is hardly there! Jumping in shower and plan to spend some time outside since the weather is so pretty today. Two weeks off til I have to do this again! 😃
Hope everyone is recovering too. We will get thru this.
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Day 5 (Saturday-no steroid) was a good day. Got outside and did some spring clean up in the yatd walked the dog, did a little cleaning inside. Still had queaziness down below but not enough to take anything for. I decreased my olanzapine from 10mg wednesday, to 5 mg Thursday and then 2.5 on Friday night. Woke up saturday almost clear headed. Today was decent too, maybe a little more tired.
I basically feel like how I felt in the 1st trimester of pregnancy. Slight nausea underneath, good food that I usually eat sounds disgusting and protein, carbs and junk sound great! My nurse at infusion did say they see some correlation with how nauseous your are on a/c with how nauseous you were with pregnancy.
Good luck to all starting this week!
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The headache meds my doc called in we’re a game changer for me! I felt like my normal self last night. It was such a wonderful evening at home with my family! Back to work today (luckily I can work from home for now). However, my digestive tract has decided to fully awaken this morning and the pains are terrible! But I’ll just be thankful that at least it’s working again, and I won’t face the constipation battle any more for now.
Hope everyone has a great Monday! <
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DebraC - I think we are on the same schedule (I started TC last Tuesday too). Glad to hear your getting along ok now.
Yesterday for me was a terrible day. Didn't get off the couch. Not taking any meds except Claritin. No nausea, but throbbing headache, all over body aches, diarrhea, and extreme fatigue. Not sleepy, but zero energy. Temp went up to 100.4 about 9:30PM, called nurse line (as instructed), they sent me to the ED to assess for neutropenia. Ended up spending a glorious night in the ED. Neutorpenic, but not severe. Home again. Feel slightly better today. Up and working...
Not exactly sure of the bomb that went of in my chemo recovery yesterday, but I do not care to repeat it...It would be great it there were some way to predict when the "bad day" is going to hit. I hear the experience is different with each round as well (ex. no nausea this time, could have it next. Diarrhea this time, maybe constipation next.).
Bam320 and MyFavorite - how are you doing today?
Farfala6 and MsMarie - you still rocking it?
Anyone starting this week?
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hello, port in tomorrow, radiation consultation Wednesday, chemo teaching and Echo Thursday, chemo on Friday 4/12/19. AC 4 doses and T 12 doses. I would rather not do this if optional. Already shaved my hair and got a wig. Chemo before surgery, praying it responds
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robinred, sorry to hear you had a scare, seems you are on the mend now.
I had offweek labs and WBC was critically low. MO put me on antibiotic. No fever so no hospital thank goodness. I feel fine, energetic. Spent weekend at home to avoid public. Oddly as soon as antibiotic was in my system, I got the bone pain. I didn't expect that, I assume from Neulasta, as late as day 8/9. I had stopped Claritin day 6. It wasn't too painful and only lasted a day and a half.
Farfalla, I moved my treatment to Thursday so we will now be same day chemo buddies! I guess if my labs are bad Wed I may have a different course though.
Best wishes to those starting this week. MM
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Hi Osinonisf,
Welcome. Sounds like you've got a plan. Praying your cancer shrinks too.
Will be thinking of you Friday.
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Dear Osionisf,
Welcome to the BCO community. We are sorry for your diagnosis and treatment but so very glad that you reached out here to our members. As you can see there is a lot of support and information that is readily shared here that can truly help with your course of chemo and next steps. Good luck as you begin this week and keep us posted on how you are.
The Mods
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Robinredbreast, I'm sorry you had tough days.
Ms Marie they don't do off week labs where I am, I'm kind of glad not to have to worry about that, though I know to watch for fever or symptoms.
Bam320: my days 3-7 were exactly like first trimester of pregnancy, exactly!
I am due for treatment #2 on Thursday (chemo buddies with MsMarie!) and so far so good. Last thursday (day 8) I felt tired and off. But friday through today I felt 100%normal, went running at gym, lots of social stuff, v busy day at work today. I am wearing my wig for the first time today and it's my biggest problem: I'm convinced it looks weird and it's giving me a headache. Can't wait to go home and get it off.
I am not taking anything for granted and hope but don't expect that next one will be as easy on me. But every good day I have I do appreciate and try to make good use of. I will be starting Claritin tomorrow morning (I take it 2 days before and 5 days after) and never had anything I recognized as bone pain.Food and drink have tasted normal for me, no mouth sores, I even had a glass of champagne (just one) at a birthday on Saturday and it tasted good. Gearing up for the next cycle, and trying to get every possible work and house errand done while I feel good!
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Hello-This is my first post.
Diagnosed Feb 25th- Many disagreements between doctors on best plan of care even changed hospitals and care team who still could not agree. Originally was scheduled for double mastectomy 3/26h. Plan changed 3/22 to chemo first. Port placed on 4/3 original chemo blend changed to 4 rounds of AC followed by 4 rounds of T. Chemo to start this week, day yet undetermined but really hoping for Wednesday 4/10. Bilateral mastectomy and radiation to follow after chemo finished.
I have appreciated reading others posts as I am sincerely hoping to continue working full-time as I have flexible job which is primarily from home, but have to schedule consistent weekly meetings with students and am trying to plan the best days/times to do so. It seems that days 3-4-5 are the worst for most.
Thanks for everyone's honesty and willingness to share.
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My first chemo is in the books as of this past Wednesday, 4/3. I wasn't really nervous because I knew the sooner I started, the sooner I would be done. It went smoothly and I was home before I knew it. The nurses were great and even laughed at some of my jokes. Over the weekend I felt great... so far so good. I've had a total of 3 acupuncture appointments so maybe that has something to do with why I feel so good., They've got the nausea thing figured out which I am very thankful for. I only had to take anti-nausea pill twice so far. I had a mild headache for the first 24 hours and I've noticed my nail beds have started to turn gray. My manicure is my friend since I chose an opaque color so I won't obsess over them! Acid reflux kept waking me up Saturday night even though I had been eating really bland food so MO gave me a Prilosec perscription. Any one else on this? Seemed to do the trick.
I had a Hair Today Gone Tomorrow party yesterday for my support team which was so uplifting. Highly recommend doing something similar. I hit a wall afterwards and went to bed at 7:30! Woke up this morning (Day 5) and felt achy all over. Even my scalp hurt. Took Aleve and felt better by the afternoon.
I get my hair cut on Friday for my halo wig. It's a wig made of my own hair to wear under hats and scarves. Check out ChemoDiva.com. Not many of heard of it but I found out about it in this community.
One TC down and 3 to go!
Love and light to you all. Good luck to all starting this week!
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Welcome, SaltyPepper! We're so glad you've joined our community, and we hope you find this to be a supportive space as you begin your chemo and prepare for the rest of your treatment. This community knows what you're going through and can be a valuable resource and support system when you need it most!
The Mods
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Karen- I am really hoping for a Wednesday start date too! Although, this means that I will likely start on Friday based on how things have gone so far. From reading, I see this isn't your first time but appreciate all of the things I am hearing from all of you.
I am a nurse midwife and professor but am not ashamed to say at how much I don't know about all of this. I am receiving care at a huge teaching facility and am shocked and appalled at how little education is a part of this all. I am making notes on what you are all saying and dong!
I have had many set-backs and the best one was my infected biopsy that landed me in triage with the best Nurse Practitioner ever last Wednesday. However most of what we talked about changed again. I am happy to have stumbled here today.
Karen0 -
Good morning, I have a mouth question. I’ve been rinsing with salt/baking soda or Biotene. My mouth is super dry. No sores yet, just irritatingly dry. It wakes me up in the night with the need to drink, drink, drink. I’m drinking tons during the day, water, ginger ale, water melon, juice. I feel I’m sleeping with my mouth open and that doesn’t help. Allergies are at startinghere in Sacramento, I take clairiton for that and when I have the shots.
Any suggestions.
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Debra, try ACT products and electrolytes. I use an oral rinse called cloSys, not necessarily for dry mouth, but I have no issues with mouth so far. MM
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Caught up with everyone. I had an awful weekend. Just felt totally yucky, head not right and hurting, no energy, weak and nauseous. Saturday I didn't leave the couch and Sunday I had to start taking Zofran. The smell and thought of food was a no. I was so depressed too, which is not me, so I think also a side effect for me. I was telling my hubby I was not going back for more of this! He left Sunday afternoon for a work trip, and I had my mom come over around 5pm. She brought me a fruit smoothie and I was able to drink that and eat a McDonald's cheeseburger, of all things! I think maybe because I knew what it would taste like? I am not sure, but it worked and I was finally able to start perking up. I took it easy all of Sunday and Monday, I got up, fed the kids, horses, dogs, and went to work. It was a warm beautiful day here in Oklahoma, and I was able to walk the dog, sweep the porch, water plants, change hummingbird feeder, take my son to scouts, etc. Normal life! Felt so good. Still feeling good today also, at work. I really need these good days to keep doing this. It felt SO bad this weekend...I'm never sick (well, except cancer, lol) so I am not used to being down like that at all. It's very disconcerting. My onco is not doing any bloodwork this week either, they only run labs right before my infusion, so I have no idea what my counts are. I am trying to be careful, but also just living life at work, home, etc. I can't live in a bubble.
Glad to see everyone is doing fairly well so far. Seems we are having some similar experiences.
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Hi DebraC, If you are asking if others are experiencing the same symptoms, the answer is YES. I have exactly the same type of dry mouth at night. Water at the bedside for frequent drink during the night doesn't seem to make a difference. I too feel like I'm sleeping with my mouth open. I think this is just part of it and we need to keep up the rinses during waking hours and drinks at night. Also, my mouth feels like there is a layer of film covering it, similar to after you get out of swimming in the ocean and a film is covering your body... dry mouth kinda feels like the Saudi desert. Looks like MsMarie has a recommendation.
Unfortunately, I didn't get much of a head start with premeds before my first treatment. Just started Claritin and steroid (one dose) the afternoon before. I think this set me back a bit. I have been experiencing killer headaches and terrible pain all over (bone pain). Feels like my bones are not attached to anything, but free floating around in my body, throbbing pain everywhere. Today (day 8) is better however.
My MO mentioned just staying on the Claritin throughout treatment, which I plan to do... continue taking Claritin daily. Hopefully next round will be better.
SaltyPepper/Karen, I'm sorry for all you are going through. I completely agree with your assessment of academic health systems lack of education opportunities... kinda oxymoronic. I originally started treatment with a MO in a major health system and switched just prior to starting chemo to a smaller health system. Best decision I could have made. Not only is the physician (new MO) more focused on me the patient (and less on academia, research based statistics, etc.), but the education and follow up from my new MO staff is outstanding. In addition, I strongly believe the anecdotal information (personal accounts and observations) we are learning from each other on this blog is irreplaceable. Glad you are here.
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Time to jump in and join all of you. I will starting Chemo on Tuesday, April 16th. 4 bi-weekly AC, followed by 12 weekly Taxols. Will have a DMX once I'm finished with Chemo. Port was put in last Tuesday. I had to have an MRI biopsy on my "good side" on Monday, since they saw something during the MRI on my cancer side. Still bound up and sore from that. I have ILC and it did not show up on Mammo or Ultrasound. Since it is quite large, we are starting with Chemo. I currently practice intermittent fasting, and have 3 40+ hours of fasting each week during lent and the plan is to continue to fast through my treatments. I'm hoping this will lesson any SEs. I currently don't eat on Monday's so this should slide me right in to my Tuesday Chemo with at least a 36 hour fast depending on my infusion times. We are also leaving for a Disney vacation 3 days after my first treatment. This should be an interesting experiment! My goal is to work through treatment, and even work while being infused. I am grateful for work flexibility and the ability to work from home during treatments. I am also grateful tothis site for the support that is given to each other. I am voraciously reading everyone's experiences to date. I look forward to learning from and supporting all of you too.
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Hi,
I'm actually finishing up 5 months of chemo in a few weeks and wanted to stop by to offer encouragement and share a few things that I found helpful, in no particular order:
1) When on Cytoxin I found slowing down the drip to be very helpful in avoiding the hangover / headache.
2) Similar note - I asked for extra hydration at the end of each chemo session. It helped greatly with fatigue and with nausea.
3) Rest when you are tired! But also take advantage of the steroid kick if you want to.
4) www.mealtrain.com was extremely helpful in organizing the many offers of help we were fielding. As you go, you may find your level of fatigue increases. Be ready to accept help!
5) I bought a very expensive wig that I wore exactly once. I also bought a ton of inexpensive but cute hats that I actually kind of love. I sleep in soft caps for warmth and also use a satin pillow case for nights I'm too warm for a cap, but need a soft place to put my head. (Amazon has a lot of cute caps - search "Chemo caps" and you'll get a ton of choices.)
6) You are a warrior Queen going through a lot right now. Don't just ask, demand, that your medical team take great care of you.
7) Drink a lot of water! Eat what you can get down and seems appealing to you. You will have time later to change your diet. If you can do it now, great, but don't put pressure on yourself to become a health nut overnight.
8) I found Biotene mouth wash and toothpaste helpful for keeping my mouth hydrated and it was gentle enough that I did not develop mouth sores. There are other brands that work as well - but that's what worked for me.
9) TheraBreath mints also helped with dry mouth and with thrush (something you can get when your immune system is stressed).
10) As I lost nose hairs and therefore started to develop nose bleeds, I found a humidifier by my bed helped quite a bit. Also, saline mist.
11) Your eyes may dry out and, counterintuitively, this could lead to runny eyes. Artificial tear drops actually help with excessively leaky eyes. (Something I learned on these boards and verified with my MO, but he would have never have mentioned it if I hadn't.)
12) I buzzed my hair as it started to fall out in clumps - I found it less emotionally difficult to control the timing than to keep cleaning handfuls out of the shower each morning. But this is an extremely personal decision - do what feels right to you.
Final word of advice - people say all kinds of silly things when they don't know what to say. Have patience with your friends and family and take their comments (as dumb as they sometimes may be) in the spirit in which they were intended, which is almost never to be hurtful or insensitive.
You are strong and resilient and you can do this! You will have days where you feel less like Wonder Woman, but days where your own strength amazes you and inspires those around you. You will find reserves you didn't know you had, and face obstacles you didn't know you could overcome. Allow yourself to grieve the "normal" life you had and be OK with your cranky and sad days. Right now, you are all about you. I say this as a mother and a wife, but it's not selfish to put yourself first right now. As the flight attendant says, you need to put on your own mask before helping others.
Best of luck to you all!
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Thank you Kber for your pearls of wisdom and encouragement.
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kber, I really appreciate all your kind words and good advice. I also love the emotional tips and the allowing ourselves to be down/tired when we need to be. And I think the “oxygen mask on yourself first” tip is especially helpful to read as a mother. Thank you.
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Kber's advice is excellent... I will add: exercise. Even if you feel rotten, walk a few blocks! It will help with SEs and recovery. Also exercisers have lower rates of recurrence. If you can do 3-6 hours per week, that's the sweet spot of lowest recurrence.
And brief fasts prior to chemo can bring the SEs way down (see Fasting Mimicking Diet, Dr Valter Longo, USC) as well as to *boost efficacy* of chemo response (in mice, so far-- testing on humans now). If you fast it is important to super-nourish yourself after the fast, eating lots of nutrient dense foods as you come out of it.
Being TNBC, I wanted to do everything possible to attack the cancer so I also ate a primarily vegan/keto diet and went totally off bread, sugar, and booze (exception: I would eat a little toast or potato, post chemo, if I was having trouble eating other things).
Heat.... if your tumor is palpable, heat (hypothermia) can damage or kill cancer cells. My tumor was close to the surface of my breast and easy to feel, as was my lymph node. I did a lot of heat on them. The heat needs to be abut 109 for about 1 hour. That will leave you sort of lightly burned/ dark magenta pink... But the normal cells will heal, whereas it really wallops those cancer cells. I absolutely LOVE a 105 degree hot tub so I went above that to "very uncomfortably hot'... I used a very-hot hot water bottle (as vets do, for animals with un-resectable tumors). I did it two or three times the week prior to chemo, and had a hot pad on my tumor during chemo and afterwards (to bring the chemo-laced blood to the area). I talked to the head of hyperthermia at UMD (after my chemo, prior to rads) and he told me "I am sure what you did helped you a lot."
Last: visualization: I visualized pac-man immune cells coming to nibble at my tumor and shrink it. It matched the fizzy feeling I would sometimes get. I asked my cancer cells to let themselves be eaten by my immune system, sort of "give it up for the good of the team." I visualized my chemo going in like a beam of light and chasing out all the shadowy areas of tumor. I think visualization is important.
Chemo is no picnic -- but you can get through it, and you can be well!
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Hi all,
Just got the update on everyone. Welcome to all the new folks and thanks Kber for your insight and glad you are at the finish line!
Princessofmeh - were you able to start today?
Alicesneed - Did you see the oncologist today?
myfavorite - so glad the headaches got under control
robinredbreast - hoping for less exciting time and no er visit next infusion
osionisf - good luck on Friday!
msmarie - thankful you had no er visit. Kind of glad I don't have blood work prior to next infusion!
farfalla6 - good luck tomorrow
saltypepper - Hope all goes well today!
ilovevermont - I have 40 mg Prilosec. I have not been taking it everyday but I might as well start because there times I eat and have burning sensation but nothing that keeps me up at night.
Debrac - I am completely dry in the morning. I am not usually a soda drinker but find myself downing a Sprite first thing in the morning. I did the same when I was pregnant
Kimg - glad you got to feeling better. I am never sick either and it stinks not to be able to do/feel regular. I actually get a little queezy thinking of my next infusion.
santabararian - I totally agree with the visualization. I intended to spend my whole infusion just visualizing any cancer cells dying on the spot but I had visitors and very chatty nurse. Next one I may be on my own and hopefully will have an awesome pac man game going on in my head!
I have been feeling basically normal maybe a bit more tired. I took a nap the other day which is something I never can do. Still getting out and walking. I am still on restriction from surgery so there is not a lot else I can do but walk. Hair is holding tight. I almost wish it would start to go because I am needing a hair cut. My hairdresser wants me to bring in my wigs to see if she can tweak them for me. I have one that I got at the salon at my breast center and I ordered another one online that has not arrived yet. I will be back to work on April 29th and I encounter a lot of people in my work day and hope my wig looks natural. I would love not to wear one but that would lead to so much explaining through the day and I don't care to have to do that.
Sorry if I missed anyone's update. I am thankful to all of you for giving me a place to come and share/vent/learn through this experience!
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