August 2015 Chemo Group
Comments
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SoCalgrl - the penguin caps are tolerable but they definitely made the whole chemo experience more difficult. They have to be changed every 30 minutes. The first 10 minutes or so you have a big "brain freeze". Then you head get used to it and by the time the 30 minutes is up, you are numb. Then you start all over again. It's a long day. I was finished with my chemo treatment at 1:30 but had to stay 2 extra hours with penguin caps. So I won't lie - it's a hassle!!! But if I keep my hair, it's worth the work.
Oh and it was a bit challenging to eat as the strap was under my chin and made it hard to chew and swallow. Next time I am bringing a wash cloth to put under my chin strap as the velcro is scratchy.
So far I haven't lost a strand but it's still two early. I am at Day 11 and they say it doesn't start to fall out till Day 14-21. So we shall see. I go back on Aug 24 for treatment #2.
I am not icing my hands. I think that would put me over the frozen edge! I hate being cold. I brought a heated throw with me which kept me nice and warm.
If I wasn't doing the caps, the whole chemo experience would be somewhat relaxing (except that you are putting poison in your body). Sitting there for four hours with a book or whatever and having some quiet time isn't the worst thing. I like to make lemonade out of lemons.
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@JenPam, thanks for the well-wishes! It was surprisingly uneventful yesterday. I've said this before and I'm sure I'll say it again: as long as I know what to expect, I feel better. I've been working on staying hydrated, taking the Zofran every 7 hours, and eating. So far, I feel suspiciously good (maybe a little toxic, like a mild hangover, but nothing too horrible), and I'm hoping it stays that way.
@Suzanne50, I second the recommendation to take the meds as prescribed. I was terrified of chemo mostly because of nausea (I had family members who went through chemo in the late 80s, and it wasn't pretty), and I'm impressed, thus far, with what Zofran can do.
@italychick, thanks for the shout-out and the gum recommendation! I used to chew xylitol gum way back when. . . looks like I'm heading to the store today to pick up some more.
@ksusan, RIGHT ON. I totally agree. Meds + hydration is the key physically, and not expecting to have side effects is the way to go. My doc and chemo nurse both said that some women have very, very few side effects on my regimen (TCHP, and I don't want to speak for AC, since I just don't know), and I say three cheers for that notion.
@superius, I'm all for ice cream dinners. Now I might have an excuse!
@knitpurl: welcome. I completely understanding wanting to get your treatment underway—as I keep saying, knowing what to expect really lessens the load. Sorry you're here but glad you found us, if you know what I mean.
@mama-bear, the port is no biggie. You can do it, and it is SO MUCH BETTER than having an IV. And, heck yes: yay chemo! Go in there and do your thing!
@sloan15, I went and visited my parents, mother-in-law, and old friends last weekend. I totally get what you're saying about wanting your dad to see you healthy (pre-chemo healthy, not just healthy once you're done with chemo). It was a good trip, and I'm glad I went. We also did some hiking, which I think I might go do today. . . . And YES: I drink mineral water like it's going out of style. I get it at World Market, where it's about $18 for a case of 12. I swear it helps with hydration, because it has sodium and other electrolytes in it as well as water. I, too, grew up with that option for stomach woozies as a kid, and it's great. I shoot for 3-4 bottles a day.
@Tam-iam, glad your port placement went well. Lil Buddy did a great job for me yesterday. One word of advice to all port folks: hold your breath when the nurse injects the Heparin at the beginning and at the end, and you'll avoid the weird chemical-citrus taste of the Heparin.
@SoCalGirl, in case I didn't welcome you yet, WELCOME. I'm icing my hands and feet for the docetaxel (Taxotere) part of my infusion. It lasts an hour and it isn't fun, but I figure minor pain/discomfort for an hour, times six, is worth not having neuropathy. The doc thinks I'm nuts, but it's a good kind of nuts. J
@JenPam, thanks for the update. YAY PERJETA. Everything I've read touts it as a miracle drug, and I'm thrilled that you're getting it. My doc said there aren't long-term survival studies YET, but that all indications are that TCHP (what we're both getting) is going to be the go-to protocol for here on out for HER2+. You got this.
@Suzanne50, props to you for cold-capping. Yesterday just icing my hands and feet for an hour was a huge chore, and I admire your fortitude. I'm donating the hair to the chemo gods—good thing I both like and look good in hats. I definitely made my nurses' days yesterday with the blue-blonde mohawk I've been sporting since last week. . . . The punk rock kid in me refuses to die.
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For what it's worth, I have a mantra for each potion. Instead of thinking of the cocktail as poison, I imagine each drug/targeted treatment as having a very specific job. For example, "dear docetaxel, thank you for being mostly-natural (since you come from yew trees) and for killing cancer cells. I'm mildly p***ed at you because I'm icing my hands and feet right now, but I trust you to do your job. That job is to go in there and kill the cancer cells before they can go berserk again." If the drugs/treatments hold up their end of the bargain, I'll figure out how to manage any SEs I may have. It's like we've made a deal. Corny as hell, but it's easing my psyche.
Even though my doc has seen "no medical evidence" that it will work, I also ordered L-Glutamine powder (and my chemo nurse wants to know if it DOES work, so that she can tell others). I've read that it can help to prevent neuropathy and that it's good for the mucosal linings of the digestive system--from the mouth right on through--and for the reproductive system. I'll be taking 1g 3x per day, along with my ginseng and B6. As a guitar player, writer, and weight-lifter, I'm doing everything I can to keep the feeling in my hands and feet!
Have a great weekend, ladies! I'm expecting to crash from the steroids, so you'll find me exercising as much as I can and lounging on the couch otherwise. Off to walk the dogs.
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@Suzanne50: I love your positive attitude and your doctor telling you to keep training. I am hoping that I can keep at it as well as I love to exercise. I meet with my oncologist next week. Good Luck to you!
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Ladies - Thanks for the welcome. This feels like the inverse of the Groucho Marx quote: "I don't want to belong to any club that will accept me as a member."
@KateB79 and everyone else doing icing for neuropathy, could you ELI5 for me step by step, what you use and how long, etc.? My doc too said that there's nothing like that that would work. But I figure since cold capping works, this certainly can't hurt me. I've chosen not to do cold capping, though. For me, I just don't want to deal with the hassle of handling the caps, etc. It may take a while and it won't be fun, but my hair will grow back. I'm afraid of neuropathy pain that doesn't go away!
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knitnpurl, here's what I'm doing: I put a bag of frozen peas under each foot, and a bag on top, making sure to cover all toes. I grab a big freezer bag of ice for my hands, and plunge them into the ice as soon as the docetaxel starts. It's, uh, uncomfortable, but once everything goes numb, it's not so bad. As soon as the nurse switched to carboplatin, I was off ice and down the hall to the bathroom (cold makes me pee).
I'm also taking vitamin B6, 25 mg three times per day (100 mg a day is the upper limit for toxicity, and there's enough toxicity going on here already); once the glutamine gets here I'll take 1g three times a day, mixed with water. I've read that swishing it through the mouth is good to stave off mouth sores, so that's what I'll do!
And if it works? The nurses will pass it on to others.
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JenPam, glad to hear about the Perjeta!
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Count me in to the group! I get my port next week and chemo starts the week after. Now that it's so close, I have been having a hard time. Cried my eyes out yesterday, mostly I'm just scared of the unknown, and let's face it, who the hell wants chemo. My stress level is through the roof. I am going to start meditating daily to see if that helps. I also want to start exercising more, but am not sure what I can do during the chemo phase. These boards are the best source for information, thank you all.
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Welcome, RavenSally. I felt the same way yesterday and had to let the tears flow. It is hard not knowing what to expect, but it has been a comfort to read how others are handling the experience. Wishing you the best.
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Hi RavenSally- I got my Port in one week before chemo too. You will be glad there'll be a week of healing before the heavy meds. Though I'm squeamish about this "Android" thing below my collar bone, it's not that bad. More psychogical than physical after it heals. A product called "Penetrex" did WONDERS in helping with the normal brusing and pain around the skin after surgery. Glad I didn't cheap out- found it on A*mazon (of course!)
It's 8 days after 1st round...and for a whimpy type like me, its not as bad as had thought. Tired and sore mouth biggest problems...not conducive to eating, so lost too much weight & had crappy WBC counts. Getting Neupogen this afternoon.
Hey KateB79- you inspired me to try & keep excersising. I'm not a weightlifter like you (awesome- that kicks a$$!), but can you still do your routines okay? Keep us posted, I'm super nosey and fascinated. Weight bearing exercise is great for bones & preventing muscle loss, maybe it'll ease the SE's...
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RavenSally, welcome! Terrible club to be in, other than the great members.
Sometimes you just have to let yourself cry. I find myself doing that about once a week, maybe more. Never was a crier before, but this whole confronting mortality thing can bring it out in just about anyone.
Birdysmom, I've really had to change my routine. I was an avid powerlifter (heavy, heavy weight) for a long time leading up to DX, and post-mastectomy have been limited to cardio, yoga, some light leg and core work, and as of today, 5lb dumbbell work with my upper body. In all honesty, it was time for a little break (my knees were getting too creaky too soon), but just stopping like that wasn't something I'd planned to do. That said, even with a sentinel node biopsy, everyone seemed concerned about lymphedema, and I decided to play it safe. I'm pretty tired today--and still on steroids, so mildly concerned about what tomorrow will bring--but find that if I take a short walk BEFORE a nap, I feel better. Going back to work full-time on 9/2, so here's hoping I figure out the magic balance!
All that said, the reason for backing off the exercise was the surgery, not the chemo. And I look at it this way: once I'm on Herceptin only (December!), I can get back to kicking a$ at the gym. It won't be easy to get back into the shape I was in before, especially on Tamoxifen, but after getting through chemo, it'll feel like a walk in the park! Are you doing Herceptin and/or Perjeta, too? And let us know how the Neupogen goes!
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Hi all -- sorry we're a little late jumping in here with this info, but for you, and all who join this group, we wanted to provide some helpful links, starting with the main Breastcancer.org site's section on Chemotherapy, including info on what to expect with chemo, types of chemo meds, and side effect management. Also, the Treatment Side Effects section is a great resource for tips to help manage any side effects you may experience.
There are some really helpful key threads here in the Chemo forum too! Great tips and practical advice on the following discussion board threads:
- Tips for getting through chemotherapy
- More Tips (and a Shopping List) for Getting Through Chemo
- PORT PLACEMENT: Detailed description of process
- Head Covering Options for Hair Loss
- wig advice
- Cold Cap Users Past and Present, to Save Hair
Also, Last Month's Chemo thread might be informative!
Hope you find this helpful!
--Your Mods
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What little box ?
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I'm here..I've had a friend who guides me through this and has given me the best tips.. I decided to take control of my chemo not let it control me..shaved my head..I do scarves and chemo beanies..that's the brand name. I also do aromatherapy do terra. The lavender, lemon, and peppermint. Helps with the mouth sores, nausea etc. oh also bob's sweet soft peppermint is a great help with waves nausea. #roaringlikealion..prayers for you all
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Hi ladies,
I've been MIA for a few days. I've been swamped with schoolwork and have just discovered Orange is the New Black on Netflix. I'm addicted. Anyhow, my first chemo was last Thursday (the 6th) and I have felt amazingly well. I've not had nausea and I can't really say that I've felt fatigued. I feel a little "off", like a fog settled in on me. And I've not lost any hair (yet)....but today has been different. Today, I've felt achey, almost flu like, all over, and then I was hot/cold/hot....so I took my temperature and I'm running about 99.8. I'm supposed to call if I hit 100.4 or higher. This is not normal for me, so I'm scared that I'm coming down with something. I've also has shooting "electrical" pains in the right side of my head today. Anyone else experiencing this? Happily, the ringing in my ears has dampened (slightly) but the head pain and elevated body temperature have me a bit worried. I'm over a week out from my infusion- this is supposed to be the good week, right?
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Not to worry. This is a pretty typical chemo response. After a little over a week is when (if you're getting Neulasta or Neupogen) your white count starts to drop (~8-14 days). Keep monitoring your temp--this is when it might go above 100.4. A temp of 99-100 seems pretty common.
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Neupogen raise the temp. I had low grade fever while I was on it !~ 99. something (along with headache & the feeling I'm on a boat -dizziness). My Radiologist friend said that's normal.
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Hi RavenSally and Saltwithsav...! Sorry about our dumb club...we still have to paint around here and put up some bitching signs: "Cancer Keep Out!"
FWIW, I had my port put in on a Wednesday afternoon and started chemo through it less than 24 hours later, and I was fine. I've heard some people start chemo the same afternoon as port placement. My onco nurse applied a freezing spray to my port before inserting the needle, which was helpful.
Pavlov, nadir for the AC is 9-10 days post-infusion, so I think your reactions are in line with what's expected. Sorry you're having symptoms.
I'm actually feeling decent for the moment, but I know my immune system is compromised, so this weekend I'm staying at home. I am getting moderately antsy to go somewhere crowded!$250 worth of TLC items arrived today, and I liked them...so I ordered $250 more. At least I'll be saving money on haircuts, straightening & color for the upcoming year, right? About the items--I plan on living flat most of the time or relying on very light foam foobs. I don't feel like sticking forms into those tiny pockets regularly, so I bought this & liked it enough to order another one: https://www.tlcdirect.org/Cool-Comfort-Especially-...
The beads are sewn in for you! Very cool (literally). I'm supposed to keep pressure on my surgical site for a while longer, because I have two small seromas that we're hoping will resolve independently, so the bra I posted gives a nice bit of pressure. I'm 5'3 1/2" and now 109 pounds (was 114 last week...), and I ordered the 32/34 A/B. I have to say the A/B looks very buxom--my mom thought it was a D! I can't imagine how large the C/D version is.
Also, the 32/24 is fairly large IMO. I have it cinched at its tightest set of hooks and it's certainly not too tight. I love that it's a center-hooked bra!Here's something else I bought: https://www.tlcdirect.org/Coobie-Seamless-Comfort-...
These are relatively cheap, since they're not made for BC patients. I bought one to try it out and liked it enough to order a few more in different colors. If you don't need pressure, you can wear it out of the bag. The removable pads that come with the bra stand out on their own even with a shirt on. Of course if I push on the pads, they collapse with nothing underneath...but then there's the option to stuff a foam foob inside (I bought two size 4 of these): https://www.tlcdirect.org/Micro-Bead-Lightweight-B...
Then I bought a couple of these cotton hats in the average size: https://www.tlcdirect.org/Cuffed-Cotton-Hat.html
Very soft and quite nice!
Is anyone signing up for the Look Good Feel Better program? http://lookgoodfeelbetter.org/
Free skin care and makeup lessons and a couple of hundred dollars worth of free makeup to take home. I'm going to attend a program in September once I'm totally bald.
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@Pavlov: I too had my first DD AC treatment on August 6. I've been a little more tired than usual, but really no side-effects to speak of. That is until Thursday, Aug 13. I felt just slightly nauseated all day. Overnight got interesting. Like you, I had flu like symptoms with achy bones and muscles. I didn't sleep well and was taking my temperature every hour or so. It averaged out at about 99.5, but spiked to a 100 for a few hours. I know that if reaches 100.4, I'm to go to the ER. I did not take tylenol to relieve the symptoms as I had been told not to mask the fever. So, I called the Oncologist first thing in the morning, and was told it's a Neulasta reaction and to take the prescribed pain killers and nausea pills at the first hint of trouble. I took one extra strength tylenol and one gravol (I only take the prescription strength if necessary), and felt much better right away. Today, the fever is gone and the old bones are less achy. I documented the experience, so that when/if it happens with the next treatment I know what to do.
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I've been following this thread and the triple negative thread, as well as last month's chemo group. I'm 39, but my MO only prescribed dose dense 4 rounds of AC followed by 4 rounds of taxol. I'm seeing other treatments have 12 weekly taxol with or without carboplatin in addition to the AC. Should I be concerned that I may need these additional drugs or treatments? My first AC is on Monday and I'm going to ask my doctor too, but wanted to get an idea of what's going on out there. Thanks all!
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Hi everyone! I want to join this group. My first chemo starts on 19 of August. I supposed to do the MUGA test for heart prior to chemo. But didn't get approval from insurence company in time, so I'll do it 2 days after my first chemo. Did anybody had any experience like mine. Is it safe to start chemo without this test? I'm not too happy with the diagnose I have like any of us, but lately I was reading all the posts on this site and reading the stories of a lot of Very Brave woman gives me hope. Thank you ladyes!
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knitnpurl, I was wondering the same thing. I'm supposed to have the same regimen as you. I'm going to have a chat with my MO about it before we start.0
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This is my first post though I have been following (lurking) this thread and a few others. I start AC+ T tomorrow. My infusion center is open 7 days a week. I have to say I'm a little (ok, a lot) anxious. I have found your posts really helpful, particularly the advice of what to have on hand and what to take with me. So many things I just hadn't thought about, like a drippy nose because of losing nose hairs. Who knew?My treatment has been a little backwards. I have already completed radiation now moving to chemo. My doc was concerned that 2 of the meds I use to treat MS would be a problem with chemo. So I had to ween off of some and get on others. He didn't want too much time to pass before I received treatment so as soon as I was healed enough after surgery I started radiation. I am glad to have that behind me and move on to the next phase.
So I'll stop lurking and start participating.
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Bunnybumps - I grew up on LI and moved away about 10 years ago! I can still hear the LIRR conductor - "Next stop: Min-ee-o-la!"
I did find this article on breastcancer.org (http://www.breastcancer.org/research-news/20130612-3). I had tried searching on the site, but ended up Googling it and made my back. It provided a little bit of clarity as far as the 12 weekly vs every 2 weeks of Taxol. Honestly I'm scared of getting the neuropathy, of course I'd rather be killing the cancer, so not sure where that leaves me as far as treatment goes.
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I'm starting my first session of TC Monday morning. I'm scared! I didn't get a port and have little veins, so I hope I don't regret that.
How common is the neuropathy side effect? If you get it short term, are you more likely to have it long term? Is there anything to lesson the chance of it when having chemo? I'm having 4 sessions. Are there fewer side effects with 4 vs 6? I didn't think of these questions when I talked with my doc. now I have tons of questions. You ladies are so helpful!
@Suzanne50, I was talking to my son about you doing a marathon in March. It's so inspirational. Also, are you doing the fast? I can only find 2012 info on it (except some anecdotal posts), but no recent posts with chemo. Did your oncologist approve of it? I'm starting Monday, so I won't even have time to ask about it before treatment.
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Sloan15: I am getting a PICC line put in tomorrow morning (2nd TC on Monday 8/17). They have to use warming things on my arm, & still have hard to looking for the vein (deep & small). My dr said usually Port is for long term (& it's surgical). Since my last session is 9/28 (I'm also doing 4 TC), I will only have the PICC for about 6wks. Though I have flush it every day & go in to change the dressing weekly.
I didn't experienced any neuropathy.
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knitnpurl, I don't have any advice but hope you get some answers from your doctor on Monday.
Hi to Ruska and Tisher!
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Hi everyone. I would like to join this group. Had my first chemo on 5 Aug, a mixture of 3 drugs, Fluorouracil + Epirucidin + Cyclophosphamide. Am thankful that I experienced minimal side effects with just reduced appetite & some headaches on day 6 & day 7 post chemo.
Been drinking minimum 2 liters of water daily, on top of the fresh coconut juices (easily available in Malaysia), plenty of soups & light exercises.
Next cycle is 26 Aug & I hope all will go smoothly too.
Am looking forward to be active & support each other in this journey.
Best regards,
Rachel
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Hi Rachel! I'm glad your side effects were minimal. I wish I had fresh coconut juice readily available.
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Hello, Ruska, Tisher and Rachel! Ruska, I can only speculate about the Muga test, but from what I understand the AC portion of the chemo is hard on the heart and they want to get a baseline test and make sure your heart is healthy before starting treatment. I would guess that if your overall age/health are very good, then your doctor would feel comfortable starting chemo before the test.
Sloan15 - You can do it. Good luck tomorrow!
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Hello Tam-iam. Thank you for your response. Probably you are right , I'm 38 so the doctor thinks I can handle it.
Happy to find this forum, it gives me a little piece of mind.
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