Chemo Starting September 2018
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Hello! I start my first chemo tomorrow. Taxol and herceptin for 16 weeks. Should have started three weeks ago but had liver issues. Ready to start so I can end it but super ner
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piksie, I just started AC yesterday as well! Hey there sister! 😉 My MO and chemo nurse both said Tylenol and Tylenol ONLY! Hope you continue to feel good. I had headache and got up at about 2am with nausea starting 😫 I took my as needed med right away as well as exactly 4 hours later! Anyone else out there know if I can keep taking my anti nausea med every 6 hours and not wait to start feeling sick? I’m afraid if I wait until I’m sick it will take too long to work. I was REALLY expecting to not have any major SE on This first one silly me! 🙄 Thanks ladies! Glad to. Have. You all with me on this journey yet sorry we are all on it!
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Hi All,
Today I go to see Oncology Nurses as Chemo Day for me is September 20th.
The side effects are so scary and everyone says "you are going to be OK." Really?... I have had two surgeries since August 1st...after my LBMX the cancer was much worse than previous biopsies etc revealed. I needed a second surgery last Wednesday for positive superficial skin margin. Also had a port inserted.
I am ILBC Stage 3 Grade 2 17/21 nodes estro. + Prog - Her2 - and genetic testing was negative.
I am diabetic but weight loss, exercise and nutrition controlled ..for now.
I barely take an aspirin and now I have multiples of drugs to deal with.
A/C 2x4 then Taxol 2x4 then radiation...
Yet so many encouraging comments from everyone shows me I am not alone nor in the worse case scenario with this dread disease. I lost my Mom to cancer years back. My Dad , Brother and another brother fighting a cancer since March...so maybe I have a reason to be a bit freaked out.
Thanking all for being brave and sharing all you can to help others.
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Hi bootsie, welcome, but sorry you have to be here with us! I am also starting AC next week and am operating under the assumption that I am going to be fine. What else is there to do? Like you I am also Stage 3, grade 2 and ER+ and my cancer was discovered to be much worse post-surgery. My dad died of cancer a few years ago as did 2 of my aunts, so I am definitely scared. It helps to see that we are all in this together. We can do this!
For those who have a few infusions under their belts already - can you recommend any must-haves? I'll go shopping this weekend, but the list from the "tips" post is so extensive it would be great to hear what people have really found that they needed/used.
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Heather, I'm so sorry you're feeling SEs already! I got anti-nausea meds during infusion and have been taking Compazine every 6 hours, but haven't needed it. Perhaps it's doing its job; perhaps I don't really need it? Not planning to find out... My energy level has stayed up as well, but I'm sleeping way more than I did prior to diagnosis, so that's probably a factor as well. I hope you can get some relief!
Pcranky, cute hair! I did my "hair modelling" yesterday. It was fun, but I really dislike the final product. The girl is an apprentice and her boss wasn't there, so she felt very uncomfortable going any shorter. I begged for a short pixie, but she just couldn't do it. Luckily, my boys are going to give me the whole shebang on Sunday. A few friends are coming over with light finger foods, but mostly to do the job if the boys aren't up for it. I'm on day 3, so it probably won't be going anywhere for a week and a half. Oh well! Given all the working parts (soccer, cub scouts, dad's schedule, sea cadets, etc), it's Sunday or never.
beeline, I wish I had more for you, but I'm one in and I feel pretty good. I took way too much food so will pack much lighter next time. They had pillows, heated blankets, etc for comfort. I'm not icing anything, so I don't have any recommendations there.
bootsie, welcome. Looks like different diagnosis, same regimen. You are definitely not alone! This group of warriors has been an enormous blessing for me! Thank you all!
Ginger, welcome! Hope today was a good day for you!
Remember: you have cancer; cancer doesn't have you. {{{hugs}}}
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Piksie and Pcranky, I like your hair. Look really good!
Beeline, for me, I only purchased baking soda for the mouth wash mix, soft tooth brushes, waterpik for floss, wig, Claritin for bone pain, I think that's about it. I didn't buy a whole lot before the infusion. I did purchase senokot-s when I found out that I need it. And I have Tylenol already at home, but if you don't have it, I would suggest that you get it. Oh and I just purchased a heated pad from Amazon, again for bone pain. I hope this will help you to at least get started.
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First TC treatment was on Tuesday and felt fine until yesterday when I had to get my first Zarxio injection to boost my white blood cells. Onco told me that I would be getting that injection, but what he didn't tell me and i didn't find out until Tuesday, was that they want me getting that shot for 7 straight days! I'm really upset as it seems that most people on here get Neulasta and it seems that they only get the shot once between treatments. If I have to get 7 shots for each treatment, that's 42 shots! This makes me super tired. I've been sleeping most the afternoon and I have a 4 and 6 year old! Has anyone else received Zarxio or Neulasta and if so, how many shots do you get between treatments?
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beeline - Of the things I bought to get ready, I'd say the most important for me for my first round are claritin and aleve for the bone pain from neulasta, bland snacks to eat (crackers, yogurt, jello, easy heat-and-eat pasta meals) and a variety of things to drink since you have to drink A LOT (besides water, I have gatorade, fizzy water, juice, milk and chocolate milk), biotene mouth rinse and I made a bottle of salt and baking soda water for rinsing, extra soft bristle toothbrushes (I was advised to use a new one after chemo, then ditch it after a week and start with another new one), disinfectant wipes to wipe surfaces the first few days post chemo if you share a bathroom with anyone (you are excreting poison for a little while). I am not doing a wig, but I have a couple of cotton caps and some silk scarves for when my hair falls out. I also bought the gummy versions of a multivitamin and biotin. I especially didn't want to be swallowing a big vitamin tablet every day. I have xylimelts and ACT lozenges ready for dry mouth but didn't need them for the first round.
Two other ideas you (or anyone else here) may or may not want to pursue: If you email info@preggiepops and tell them you are in chemo for breast cancer, they'll send you a free sample box of queasy drops. Also, I signed up at chemoangels.com and they assigned two angels to me. One sends cards (she even sent my husband a birthday card), the other little gifts (I've gotten a word find book, a bracelet with a little breast cancer angel on it, and three packs of ginger chews). It's sort of a funny service since its strangers, but it's people paying it forward and just surprisingly lovely to get those things in the mail when you are feeling low.
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hbluv - did your MO say why he wasn't doing neulasta? I get the neulasta onpro - its a device they attach to your belly (or arm) with adhesive right after chemo. You feel something that feels like the snap of a rubber band when the needle goes in and back out, leaving a tiny plastic cannula in you and you go on home. 27 hours later, it beeps and releases neulasta in for 45 minutes. That really doesn't hurt either, just feels strange. Then you peel it off and discard it. No shot, no going back to the chemo center or doctor's office. Maybe ask if you can have that next round instaad of the 7 shots? That sounds awful to me.
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Thank you beeline...I am sorry you have been thru much loss with your family members.
Just got home from visit to Nurse Oncologist and it was a good informative visit. I am as ready as I can be.
I wish it was the 20th. Time to get this thing started.
I plan on bringing my Nook, and journal...they have a TV attached at each chair and the fridge is stocked well at Chemo with snacks coffee tea etc.
Looking through lists to see what else I might need or want.
Wishing you well! We can and We will!!
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wanderweg- Haven't asked my MO about neulasta yet. I have Kaiser so I'm assuming that's not an option, otherwise they would have given it to me? I will ask though. My understanding is that Zarxio is much much less expensive.
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hbluv - I hate that they make treatment decisions based just on cost. They really should take into account quality of life issues for the patient. I'm sorry. But I'd ask anyway, just in case.
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hbluv, I had Neulasta onpro too. Not sure why you have to go back to your doctor for a shot everyday for 7 days straight. Maybe you can ask him to get Neulasta onpro instead.
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HI
I had a question on the shampoo use with chemo. I am trying the penguin caps and I had a my first treatment yesterday. I bought a shampoo online that is chemical free but also claims to helps thicken and grow hair naturally. I am not sure if that would be good to use or just stick with something simpler? Any thoughts?
Thanks
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day 13 for me today. I am shedding more than usual. I am afraid it will be time for me to shave soon... I am getting baptized tomorrow to renew my faith, keeping my hair until then for sure. I don’t want people to see me differently.
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thanks for the reply and encouragement! I wonder is the fatigue in my head?! Also dealing with pain from my port insertion from right before my first chemo. I’m so thankful for prayer and support!
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almost one week past first infusion. My fears, thus far, have been unjustified or overstated. Definitely experienced passing queasiness and morning-sickness like nausea on and off all week. I have napped a few times, mostly because I'm allowing myself, not because I feel bone tired. I think there is definitely an emotional fatigue component-all of the worrying and waiting. I think the steroids and my fear of empty-belly nausea has kept me eating. Going to have to keep tabs on that during my off weeks, otherwise I'll gain wait through this! Finding beverages I enjoy has been a bit of a struggle but tonight water w lemon is working. I didn't feel like I needed much of anything during my infusion. An extra blanket, comfy socks, my iPad and my husband kept me occupied. I ate some crackers and a little scoop of ice cream from the cart. The fluids definitely made my body cold so I might need a sweatshirt (and a hat 😫) eventually. The only med I took tonight was a Tylenol and a Claritin for the possible neulasta pain. I'd like to give my system a break during my off weeks if I can....poor liver and kidneys. Wishing us all peace through this process.
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Piksie! You look adorable!
Wanderweg I also signed for Chemo Angels - got my first card in the mail today... I was so excited! I love getting mail so i'm trying to treat this as a perk.
Today was Day five - week 2 - Taxol and was getting my butt kicked a little today. I had started feeling better yesterday (and I hadn't feeling that bad to begin with), and figured the down point for this week had passed. Got up, had breakfast, started hanging my laundry, and then lay down for the rest of the day with OMGTIRED and stomach cramps, with a side of body aches.
Finally feel better now, you know now that its late at night and i really should be sleeping I want to be up and around.
I did not drink enough or move enough the last two days and i'm really seeing the difference. I hope i learned from it.
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First AC infusion on the 20th and I’m quite nervous. The shopping list that I found on one of the posts was quite useful. It’s comforting to go out and be proactive. I get my port in on Tuesday and I’m wondering how painful it is. I guess I’m a little gun shy because I’m finally healing after UMX. The idea of dealing with another surgical site, no matter how small, makes me sad, although I know it’s for the best since I have such crappy veins. Does anyone have any tips about the port? Does it hurt? How long does it take to heal? I really would like to get back to swimming sooner than later. I truly miss it. Anything to make my life seem a little normal would be welcome. Speaking of that I’m going back to work Wednesday. I’m hoping to work as much as possible throughout the chemo. Cheers to you all. Your bravery and commonsense is inspiring.
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hey ladies! I thought (and hoped) I would get to start chemo this month and have been reading this chat to prepare. I hate that we are all here but what a great bunch of women in this group. I have my appt with my MO this week to find out what my cocktail will be. I have a second opinion scheduled the following week. My SO said he would recommend ACT and I don't disagree. I am ready to start going on the offense!!!
I plan to keep up with everyone's suggestions on helping with SEs. I am so ready to get started with treatment.
I was strongly considering cold capping. But decided not to. I read a really good comment on here that I couldn't agree with more. I am afraid I'll stress more over the hair falling out than I would if it was just gone. Going to get some cute halos to wear under winter caps. May winter last really really long :-)
Anyone else have small kids? We have 3. Looking for some tips on easing this process for them.
Sending hugs to everyone here :-)
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Sadlynew- We have a 6 and 4 yr old. We haven't used the C word with them. We just told them mommy needs surgery so after surgery we need to be gentle. We can't jump on her or lay on her. They did fine with that. Now with chemo, we just tell them mommy needs medicine. She will feel tired. We told them she will probably lose her hair and they just laughed and said she'll look like grandpa! I haven't lost my hair yet, but when I do, I'll probably wear a wrap most of the time and I think they'll adjust fine to seeing me without hair.
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2018summers - I’ve seen Nixion recommended. I just use Aveebo baby shampoo because it’s gentle and paraben- and phthalate-free.
MandM- I got my port put it two days before my first round so the chemo nurse told me it would be tender and hurt some. One sharp pain, like a shot, and that was it. Couldn’t feel the blood draw, couldn’t feel the chemo. I strongly advise you to ask for a script for EMLA cream. You put a big glob on an hour before and cover it with tegaderm (from the drug store) or even plastic wrap. That really helps, and I think that first one would have hurt more if I hadn’t used it. I don’t think I’ll feel it much at all next round using the cream. I’ve have my port now for almost three weeks and it’s completely healed. I took a bath today without worrying about submerging it. It’s no longer sore either.
sadlynew - Good luck! You may well still start in late September but if not and if you join the October group, please come back and let us know how it goes.
Hbluv - that takes me back to when I had to have a c-section with my second son. My first had just turned 3 and I couldn’t quite convince him to be gentle when climbing on to me or throwing himself at me. I finally had to show him my staples and that did the trick!
So, day 17 and I’m finally losing a little hair! I had seen no evidence until half an hour ago when I got out of a bath and saw many small hairs from my buzzed head around the water line. I’m actually excited about that because it means the poisons are doing their job and killing fast growing cells including any possible cancer cells. When I think about it that way, I can embrace the pending baldness.
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hbluv, my Onco Nurse made a comment that Neulesta was a $6k travel pack. Crazy, crazy, crazy!
pcranky, thank you. Definitely not what I was going for, but it's temporary... I was planning to shave today, but this hair is going nowhere fast. I've rescheduled for Friday. The kids are planning to do the honors, but I'll have about eight girlfriends standing by to finish the job if they're not up for it. I will pick the one who's had the least champagne, because we're making it a celebration!
MandM, I got my port under conscious sedation but don't remember a thing. The soreness was mild and easily manageable by Tylenol; however, I had a week and a half between port placement and first infusion. After my first infusion of AC on Wednesday, I'm very happy to have it. Sending positive thoughts for an uneventful first infusion for you. It's amazing how different everyone reacts to the same infusion, but hopefully yours will be like mine and mostly SE-free.
Speaking of SEs, I don't think it is related to AC infusion, but has anyone experienced a low heart rate? I can't find anything indicating a connection, so perhaps Claritin or Lyrica are to blame. My resting HR is usually around 60, but I'm hanging out around 50-56 today. I REALLY don't want to talk to ANY doctors unless I HAVE to, so I'm watching closely with the intent to do nothing.
Other than that, I'm just bloated. I keep eating small meals to avoid an empty stomach, but I don't feel hungry at all. I keep drinking coffee to get the pipes moving, but I know it counteracts all the water I've been drinking, so I drink more, so my belly gets bigger, then I eat so I don't have an empty stomach. Good thing I have the option to stay in stretchy pajamas most of the day! I'm on day 5, so I'm going to stop taking any preemptive meds and see how I do. Wanderweg, I can relate to your sentiment about losing your hair. I'm very anxious for this concoction to knock out cancer. Not that I want it to knock me on my rear, I do want to see signs of cell destruction...
I signed up for Chemo Angels last night. Looking forward to that little gift of kindness. Perhaps some day soon, I'll pay it forward. I hope you're all doing well!
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I was diagnosed in July. Getting DD AC-have my last one coming up this week. Did the cold caps and have about 80% of my hair and working about 80% of days. Am trying to decide whether to do mastectomy next or taxotere. Timing ofsurgery really effects cost with my deductible. Sounds like you are recovering well from surgery-congrats. I found with AC that doing everything they told me to do got me through. It’s still no cakewalk. Good luc
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Day 10–after 1st round of FEC. Had a rough time days 2-6. Zofran could Compaxine weren’t quite enough. Will ask for something added next time. Had to go in for fluids IV. Much better now, a little ‘weak in the knees’ feeling, and not much energy.
Worse SE right now is oral!! Dry mouth. Tried all the suggestions I’ve found, but can’t keep my lips hydrated😳 anything worked for any of you?
Went to worship this morning, felt so good. And...my first venture out amongst friends flat-chested.
Still have some fluids in cavity around ribs. Having my defunct port replaced on Wed.
Love the support we get from our fellow travelers on this path
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Thanks so very much for the good advice and vibes. Both help so much. Yes- I bounced back surprisingly well from the UMX. I think the wait was the worst part. My surgeon went on vacation so my surgery date was pushed back about 60 days. I can’t tell you how upsetting that was and how hard it was to wait. That’s why I’m glad that the chemo is starting sooner than later. I did entertain the idea to cold cap because I’ve always been vain about my hair. It’s not readily available in the Chicagoland area and although there are rentals, it seems to require a great deal of effort and my support network is limited. I decided to go with a high end wig. I pick that up next Saturday.
Wandeweg thanks for the tipabout the numbing cream. I’m going to certainly ask for a prescription on Tuesday.
Piksie I feel you about not wanting to talk to doctors if you don’t have to. I’m not sure about the effects of the chemo has on heart rate, but an HR in the 50s is not a big deal. I would reach out if it goes much lower. I’m sure your rocking the stretchy pants.
It’s nice to reframe my negative thoughts with some of the comments that I’ve read here. I’ve been dreading the idea of losing my hair, but thinking about it as proof that the evil cancer cells are being knocked out is an awesome spin.
Chee
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Thanks for starting this topic. I was scheduled to have my first dose of Taxol and Herceptin Sept 14 but when my Oncologist seen some of my incisions had open wider. She postponed treatment for another week. My plastic surgeon will clean up the incisions and close them again before chemotherapy. I have to admit I wasn’t sad Chemotherapy was postponed. I ‘m going kicking screams and all the temper tantrums a toddler could drum up. 🤪 I’m sure I will settle down once the treatments start.
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KK - I am so glad that you are doing so well with the side effects!
pcranky - I am sure you will remember to drink enough water next time. We are all still learning how to deal with all the side effects, but this is one thing that I don't care to master truthfully.
sadlynew, I have two kids, age 8 and 5. When I first diagnosed, I told them that I am sick. But when I went to my cancer center, a volunteer told me to tell them the truth and to make them understand what is really happening with me. So I took her advice, and explained to my kids that I have a disease called cancer. I told them that we all have good cells and bad cells in our bodies. Good cells are always fighting with bad cells, but this time bad cells won the battle, so mommy will have to have surgery to take the cancer cells out, then do radiation to kill the cells. That was before I found out that I need chemo. Then when I found out that I will need chemo, I told them that I will need more drugs to kill the bad cells and that will make me feel really tired and sick, and that my hair will be falling out. But I assured them that I will still be the same mommy, my hair will grow back later but I have to do this to make sure that I can be here with them to see them grow. It was really hard for them when I told them that my hair will fall out, but they are kids, they can only grasp so much. I am glad that I told them the truth though, I feel that I don't have to keep on telling them that I am sick. I don't have to hide the fact that I am losing my hair and being sick as a dog from the side effects of chemo.
Piksie, I never really pay attention to my heart rate, maybe I should do that when I have my second infusiion, but when in doubt, call your doctor. That's what they are there for.
LuvB - my mouth and lips were dry for about 10 days, I kept on drinking water and used chapstick to keep my lips moisture.
So day 14 for me today, I decided to shave my hair off after church. I had my husband shave to about 3/8 of inch, but after lunch I decided that I need to shave it all off because my hair was falling quicker than I can clean it! I still feel kinda sad about losing my hair, but on the other hand, I am relieved that I don't need to see my hair falling off like rain drops anymore. I am wearing the wig that I bought per my son's request. It feels kinda weird and hot, but I am sure I will get used to it.
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Piksie - your temporary haircut is cute. But yes, let's get these chemo agents doing their thing! I'm glad you signed up for chemo angels - I got another note today. It's fun and I think I'd like to pay it forward some day, too. I take claritin and lyrica, too, and haven't had HR issues. At least, I don't monitor that, so maybe I wouldn't even know. If it continues to be a problem, I'd call the doctor.
JNKK - I am thinking now that I'll shave my head when my hair starts falling out more quickly. I have a few friends who bought wigs, wore them a few times and then decided they were too uncomfortable. But I also know another therapist who always wore hers to work. I'll be interested to hear how you feel about yours.
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Wanderweg, how is Lyrica working for you? I'm trying it as an alternative to Gabapentin, but I don't know which SEs are coming from where now that chemo is tossed into the mix. I'm afraid some lightheadedness and blurred vision might also be Lyrica. I'm off all chemo-related meds as of today and have until 9/26 to figure it out. If at noon tomorrow, my heart rate is 50, it's probably Lyrica...
JNKK, I think you wear both looks well! I hope the wig is comfortable if you choose to stay the course.
An extra thank you to all of you for sharing your journeys in this forum. I get so much more out of your testimonies than any well-meaning friend/nurse/doctor who hasn't walked in our shoes. No one can possibly understand like you do. Thank you!
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