August 2015 Chemo Group
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So Thursday is the big day...first round of chemo. So is there any tips from anyone? How is everyone feeling that is doing AC? What symptoms have you been feeling, when do they start and end? I am going to try to work as much as I can during this. I got my basket of stuff to be ready to combat what might come. I am going to try the black nail polish thing, have Biotene, hand cream, peanut butter crackers, Miralax, Immodium, lots of toothbrushes, Claritin, etc. I really getting nervous and scared so any tips would be great!
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Hi cah21, and welcome.
My tips (even though I'm on a slightly different regimen): first of all, don't EXPECT any side effects. Some women get through with minimal SEs, so better not to program your brain for the worst. Your basket of stuff is going to be really helpful, and be sure to eat before your infusion.
If you have any questions at all during the process, ask the nurses. Ask someone to come and sit with you--that was a real mood-saver for me. And STAY HYDRATED. I've been drinking upwards of a gallon of water a day (per my MO's recommendation), and I really think it's helped to stave off some of the side effects.
If they give you steroids and/or anti-nausea meds, take them exactly as directed. Nausea, like pain, is easier to prevent than it is to treat if it happens. Zofran to the rescue!
You might want to eat ice chips during your infusions; there's a lot of anecdotal evidence that doing so can cut down on mouth sores and taste changes. Rinse your mouth a few times a day with salt water or Biotene, too--I've had good luck with that.
For me, the worst part was the not knowing. Now that I've been through the first few days of one cycle, I feel like I know what to expect. It may change a bit (fatigue, in particular, I hear can get worse over time), but knowing is half the battle. All the best to you, and know that you're in the right place for support!
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thanks for the tips @KateB79! My doctor said to drink that much a day too. That is going to be really hard for me as I normally don't drink much liquid a day. That is a good way to say it "program your mind". I am trying not to do that. But the mind is very powerful thing and can dictate a lot. I know I will be so much better after the initial start of all this. The fear of the unknown is the worst thing of all. Thanks again!
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Looks like I'll be an August chemo starter, too. I will have surgery this Wednesday to have my port put in. I will start targeted therapy next week (Wednesday), then chemo (Thursday). I already drink a lot of fluids (80+ oz. of water a day), but intend to increase that amount - including some G2/Powerade Zero.
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Just got home from first chemo session! Very comfortable. They even had someone going around doing healing touch massage! Lots of time for hobbies--did Zentangle (very therapeutic and relaxing) and some knitting. A friend brought over dinner and I am hungry, since I did not eat much today. Lots of fluids, though. So far, so good, but I know the side effects kick in later. I plan to follow the drug regimen to stay ahead of it, as possible. Stocked with Imodium AND Miralax (recommended by MO as gentler than some others) for whatever comes my way!
I'm anxious to hear how knitnpurl and sloan15 did today, too. Was anyone else starting today? I think a few of you start tomorrow or later this week, so good luck.
My plan changed a bit due to pre-existing type I diabetes and kidney disease. I got only Taxotere and Herceptin today. Steroids were reduced significantly, but still caused HORRIBLY high blood sugars that are off the chart--triple normal values and resistant to insulin. I guess I will have to deal with that every time for at least a few days every cycle. My endocrinologist is also helping me manage that. I just hope to stay out of the hospital and "danger zone." I just told her all my hourly blood tests and insulin doses so she can adjust as needed. Delicate balance with other diseases in the mix.
I LOVED, LOVED, LOVED having a PORT!!!! Everything was SO EASY and I felt nothing all day with that. Slight prick with tiny bit of Lidocaine to numb site for needle into port and I felt NOTHING with it going in. Also, my hands were free to do anything I wanted. If you are on the fence, I would say do it. As always, thanks for the helpful hints and reports of your experiences. The unknown is difficult.
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Just finishing my first day of chemo, so I'm 1/4 of the way through this. I agree with Kate: expecting no side effects sure puts you in a better frame of mind. I was freaked out, but having company and staying busy taking to people really helped.
@Tshire, Today was my first day of chemo (TC for 4 sessions), and I don't have a port. I have small veins, but my hands were warm and the nurse held my vein because they roll. Easy!
The doc said to drink a gallon of water too flush the drugs out and you don't want them sitting in you bladder. Makes sense, and it helps me chug it down.
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I start chemo on Friday, 8/21/15. AC + T. I'm not sure how to get this to appear on the list.......Sorry.
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you mean like Herceptin?
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@KateB79, thank you for the reassurance about the port. I feel more like I know what to expect.
As for the Interferon, I honestly don't know a lot about it, except that it's meant to boost the immune system. I believe strongly that stress weakens the immune system, knowing that at least in my case, and I suspect many others, unbearable stress began a couple of years before diagnosis. A big part of what we have to get ready for is reducing our stress levels and boosting our immune systems as much as possible. Especially those of us getting on the chemo wagon.
I *think* my doctor said he's also going to give me something to counteract the side effects of the paclitaxol. I don't know what it is yet because I am supposed to get a list of the meds tomorrow before I go for my first treatment.
Re: having company, has anyone brought in someone non-family to hang out with them and talk? I've got a friend who's offered to (literally) be there with me, and I'd love to take her up on that if only to have a distraction after the first treatment.
And a big Thank You to whoever mentioned having their hands free as a benefit to the port! That is not something I had thought of ,but it may be the single most important thing about it personally, in terms of my experience of the treatment. I absolutely can't standing having idle hands and it would drive me batty to only be able to use one hand for several hours. Yikes.
Happy Tuesday to everyone, and I hope those of you who started today are experiencing few side effects and a good rest.
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If you drink that much water, you MUST EAT. I over-did the water & since I lose my appetite, didn't eat much (plain oatmeal) & ended up in the Hospital day 5 with extreme Low Sodium. I probably drank 40oz plus during the chemo session, more that morning, & even more afterward. then the days after just kept sipping water all day.
My discharge paper said: recommended diet is 2200 calories. DO NOT limit sait. Avoid drinking excess water.
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Superius - Thanks for that tip about drinking a lot and low sodium. I already drink a fair amount and plan to up that. I'll be sure to add electrolytes if I'm having a hard time getting the food in. I hadn't thought of that for treatment even though we hike a lot and often have to add Gatorade or electrolyte tablets to our water on hot days.
Welcome RadK, Gingersnapp, Musosgirl and Tshire. I've got you added to the list. Sorry you have to be a part of this chemo thing, but we are glad you found this thread.
SDCA - So glad to hear your first session went well.
Kate - I love your tip to not expect side effects. That is great advice.
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Hi cah21! I agree on the water advice, but personally I can't drink much more than 2 liters a day (approximately 8 1/2 cups). My MO said it would be great if I could drink 2 to 3 liters daily & is happy with my 2 liters. How are you all drinking close to a gallon a day?? I nearly float away as it is.
Anyway, my SEs have been pretty minimal so far, so unless something terrible happens I'm going to stick to my liquid regimen and hope it's enough.SDCA76, glad things went well! That healing touch massage sounds fantastic. I agree that the port is a wonderful tool. I wish the regular phlebotomist could access it for my regular bloodwork, but the onco nurse said that only certain well-trained people (not the phleb.) are permitted to use it. I'm just going to have to suck it up this afternoon and give my blood the old-fashioned non-high tech way.
Sloan, happy to hear you've finished your first infusion!
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Thanks for the reminder to eat Superius, Tam-iam and JenPam. My sodium was low, too, so I will have to remember to eat and drink a reasonable amount. I think I drank about 76 oz. yesterday and did have a good dinner last night. Just took Zofran preventively and still doing well! Thanks for the tips and support. Lots of good advice here.
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First day is done! I am feeling much better today, still tired, but yesterday I was just spent when we got home. Managed half a bowl of soup before napping. Was a little hungry when I woke up be decided that oatmeal was too much work, so I settled on a vanilla pudding cup! Drank a lot of water. I haven't gone to the bathroom this much since I was pregnant. I'm staying on top of the meds, especially the zofran. It's really helped a lot. My infusion center doesn't have an ice machine but the nurses did get me two cups of ice to chew on while I got the AC. I'm hoping that will help with any mouth pain. My mouth feels a little off, but can still use my regular silverware so far and I'm being sure to rinse and brush with biotene.
The actual time at the center was fine. I felt great. The infusions went well. And I love my port! That made everything so much easier. I read my book a little and a magazine I brought. I was also getting a ton of messages from friends sending love while I was there. I've also got my husband's iPad all set for any Netflix binging I want to do.
My boys are being so careful giving me hugs. My little one is in full-time PK now and just got one of those regular little colds that come along - but the worst timing for me. He's also fascinated with the Neulasta box on my tummy. It blinks. It's crazy! I'm taking Claritin proactively to try to avoid some of those side effects.
I'd gone through all your posts before this, so I was trying to be as prepared for this as I possibly could be. Your insights and updates really took away a lot of fear (as much as possible in this situation.) Thanks for your help and support everyone. You really helped me out.
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hi August ladies. I am almost part of your group as I started my chemo on July 31st. First of four rounds of TC? I will go back August 21st for my second round. I did not lose any hair until 2 weeks to the day after chemo start. Now it is falling out like crazy. I am shedding , kind of a mess. I think I will go get it shaved today or before 2nd treatment starts This Friday. My side effects from first round really weren't bad, no nausea, kind of punk , feeling like I had the flu 5th and 6th day after chemo start. No neulasta shot needed for first round . We shall see this second round if my white count bounces back sufficiently. I too am the dreaded triple negative so I always am interested to spot other. Triple negatives. Pavlovbell is right the triple negative sites are very interesting on the discussion boards, encouraging and informative. I was originally scheduled for four rounds of AC chemo followed by taxol but they felt with the smaller size of my tumor the four rounds of cytoxen and taxotere would be better. I am planning on forgoing radiation and opting for a bilateral mastectomy instead. I think it will perhaps give me a little more peace of mind in the long run. Anyway all of you August last ladies I understand why many of you want to start your chemo. . You want to get on with fighting the cancer so go for it!
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CinderellaNC: My first treatment (TC) was 8/5 and starting yesterday, the hair started coming out in small clumps. Noticeable to me but prob not others yet. I'm having a small "Selebrate the Shaving" gathering at my house this Friday with cocktails and shears. I have mixed feeling about this whole part of the SE - sometimes I'm ok and sometimes it freaks me out.
For those who started later in the month on chemo - how's your hair journey?
Hugs!
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So my big day is tomorrow , my first infusion , freaking out, honestly. I bought my wig yesterday and I think it looks ok on me. I want to be one of the brave ladies on this site, but I'm the total opposite.
Yesterday friend of mine came to see me from another state . I haven't seen her for 2 years. When she arrived and looked at me she said I look great, but I could see the tears in her eyes ( I've lost 20 pounds after surgeries and the stress).
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I love the "celebrate the shaving" idea! What a fun plan!
Ruska, good luck tomorrow. You've got this, and we're here for you. Remember to stay hydrated!
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Im so grateful you girls give such a support!
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@Sloan15- my marathon is Nov. 1st! I have been doing very well with the training so far. The hardest long run is going to be the one following my treatment week. I am not doing a fast. I just try to eat regular meals. The week following chemo is again the hardest. But the next two weeks have been pretty normal. My next treatment is this coming Monday. So far I haven't lost any hair but I am just getting to that time period where it starts to fall out - days 17-21 following chemo treatment. I am at day 15. So time will tell if the penguin caps work. To all of those who are waiting first treatment....it is so nerve wracking!! But I found it not to be too bad. Stay positive. Hope for the best and take it as it comes. I will hope that everyone has minimal side effects!!!
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Chemo starts this Thursday and things are picking up speed this week. Yesterday I had an electrocardiogram, which was pretty cool. Seeing my heart pumping was fascinating. Then I had a pre-chemo class taught by a pharmacist and going over the possible side effects. It was really nice to hear him say which ones aren't likely with my treatment -- a few things to cross off my worry list. I've found myself falling into the trap of worrying about every possible side effect, so I am making a real effort to expect the best. He said a pharmacist will meet with me one-on-one during the first chemo session for more specific information about my meds and what they will give me during my treatment for nausea. We also had a nutritionist meet with us and talk mostly about food safety.
Today I am getting my chin-length bob cut into a short pixie. I took lots of pictures of my curls this morning. I hope they come back after treatment. I've been working with my hairdresser this year to blend/lighten my colored hair and let my "platinum" highlights come through. This will be our chance to see what my natural color is.
Thanks for all the tips and encouragement. You ladies have helped pull me back from the emotional edge over the past few days.
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My doctor didn't prescribe any medication, like Zofran , Biotine, should I ask him? I had no chemo class nothing similar. They just said to show up for the infusion and no special instructions.
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Ruska, you deserve information about your drugs in advance, so insist on it. Knowledge is power. Taking Zofran at the right times will get ahead of nausea and vomiting so make sure to ask. My anxiety is so much lower after my first treatment yesterday. Anticipation was much worse. Biotene is over the counter and I plan to use regularly (coming from a dental professional here). I'll probably use only baking soda/salt to avoid irritations from sodium lauryl sulfate and alcohol in many toothpastes and mouthwashes.
Glad to hear others, like knitandpurl checking in after yesterday!
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Day 2 after TC: feel good, no side effects. I have a slight headache, but nurses said that's probably not the chemo. I drank tons of water. The nurse said too say my alarm in the middle of the night so I would get up Ann's urinate to empty the chemicals out of my bladder. Well, you drink that much water and no alarm is necessary! Maybe my headache is from getting up 10 times during the night. Ha!
Suzanne50, November. Awesome. You can do it! Hours is your energy? I hear that exercise makes you less fatigued in chemo, too. Are you finding that?
Regarding shaving: My friend, too, wants to have a head shaving party. I don't think I'm brave enough for that. A you can see in my pic, I have short hair. I might get it cut shorter next week, but I'm more of a small steps person. (Also, the guy next to me yesterday said he was supposed to lose his hair, and he didn't. It got thinner, but he had hair. I'd hate to shave my head if it wasn't going to all fall out!) Today I'm going to my wigwam party. We'll all wear wigs and go out so I can feel comfortable in my wig.
Regarding having friends come to visit: People either wanted to sleep or talk. Figure out which person you are and pass the time like that! Good luck.
Stay strong ladies! Keep posting mile stones, solutions and fears. We'll get through this!
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Ruska -- I would certainly ask about Zofran and another anti-nausea medicines. From what I've read, it seems to be standard to prescribe them. The pharmacist yesterday said they are taken after treatment, so maybe your doctor will address all that at your infusion.
The pharmacist recommended the baking soda/salt mouth rinse for mouth sores (not to prevent them, just to treat them if they happen). Are you ladies rinsing or using Biotene just in case?
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I'm using Biotene as prevention. It's only been one day after treatment, and each side effect seems to have its own time table. Right now, my mouth either feels fine or like it's got a slight coating. The brushing/rinsing takes care of that. I've also had a slight headache. I did have my one cup of coffee this morning even though the nurse said to avoid caffeine for the diuretic effect, but I think it cleared up some of the headache. So far no nausea, but I'm being good about the Zofran and I still have the Emend in me from yesterday's infusion.
As for hair, mine is a little longer than shoulder length. I'm debating about cutting it into a pixie cut like my friend's, but I've never liked having short hair like that! I bought a few headwraps and I'm going to a wig salon tomorrow. Since my insurance covers a wig, I think I do want one for some occasions even if I don't wear it all the time.
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Knitnpurl -- If it helps any, at my class they said caffeine is fine but don't count it in your fluid total (because of the diuretic effect). I've had a pixie in the past and I'd been thinking of going back to it before I was diagnosed, so I am actually looking forward to today's haircut. I bought a few caps and my mom knit me a couple (awww) and I've also been watching scarf tying videos on YouTube. I'll probably get a wig but I don't image wearing it too often.
I hope you continue feeling ok.
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Ruska, I start tomorrow too and I'm getting really nervous! Hang in there, I'll be thinking of you.
I mentioned in an earlier post that I was going to try the 72 hour fast....I have and it's pretty tough at this point. All I've been doing is watching the Food Network all day because I apparently like torturing myself. Hopefully my side effects are minimal.
Thank you for all the tips on staying ahead on the nausea meds, I will definitely be doing that.
Positive vibes going out to all you ladies!
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Musosgirl I had horrible, can't-leave-my-house diarrhea the first round with HPTC. This time I treated with probiotics and Imodium, worked like a charm:
1. 8oz Kefir yogurt smoothie the night of chemo, 2 Imodium
Full Day:
1. Activia in the morning (I'm partial to the peach), 2 Imodium
2. 2 Imodium if needed in afternoon
3. 2 Imodium at night.
My MO said I could have up to 8 pills per day but this amount seems to regulate me. I mix in the Kefir as needed, just for a mix of taste. Hope that is helpful!
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MissBee123, thanks for the Perjeta/diarrhea advice!
I've been drinking kombucha (for the probiotics and the beer-like carbonation) and just started L-glutamine, but I'm gonna try the kefir.
I'm renaming Perjeta . . . PROJECTA. :P
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