Starting Chemo April 2016
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I've been following this discussion for a bit now. I really appreciate the shared experiences, insights, and particularly the bat cave and keys in the fridge!!
WeRwarriors-whether or not it shows, your mom really appreciates you being there. The care giver/receiver role shift can be tough. My 29 year old (social worker) daughter has been a godsend for me on the cancer roller-coaster. My husband is great at home, but lousy with the medical stuff. My daughter is great support for the medical stuff. If nothing else, I have really enjoyed seeing her in a grown-up professional role
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does anyone use a numbing cream for their port prior to the infusion
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I use a lidocaine cream about an hour before chemo. It works well
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Welcome LimnoGal! Happy you found us, sorry you have to be here! What treatment are you on and when did you start?
How are you doing. weRwarriors - I find I really don't need one - it's no worse than a standard shot. But if your mom feels it more, then ice works well, or the cream LimnoGal mentioned.
I was late in taking my Zofran. I felt nauseas for the first time, and got a killer headache. I got the headache while driving to the doctors so I couldn't take anything. But, I got my shot, left and put my prescription sun glasses on (I was wearing photograys, but they don't get as dark). Suddenly the headache was gone - completely. Kind of shocked me, but I think it was related to to Zofran and when it kicked in it took care of everything. Weird. My daughter is running out to In-n-Out for burgers.
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Dropping in from April 2015 chemo group.... I am a year out from my initial chemo treatment. Sending you all lots of reinforcement during this period. Our group was an incredible support to me and continues to be. One step at a time, get some exercise even if minimal, hydrate, and know that the women that came before understand. Take care!
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CJSharma-thanks for the welcome. I'm sorry to be here, too, but very glad for the supportive company!
I started back in February with a lumpectomy for a papillary carcinoma and associated DCIS, followed by a week of mammosite radiation. I am on round 2 of 4 rounds of cytosine/taxotere. I just lost my hair, unfortunately on a business trip, fortunarely surrounded by good, understanding colleagues. I'm sure the trash cans full of hair gave the cleaning staff at the hotel something to talk about
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Oops-forgot to say that I started chemo on 4/6/16.
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I am definitely suffering from chemo brain now. I wrote out a lot of replies and forgot to post them and then when I did them again I went back a page to look at a comment and lost everything I wrote again. So won't be able to write too much more at this stage.
WEWARRIORS - Glad to hear your Mom is doing well. So far so good. I like to get to the hospital early too as otherwise your day is taken up with it on your mind. Good that the Neulasta shot is over and done with too. My neulasta nurse asked me could I do this myself but I would need to see her doing it first and if there is no looking for a vein involved I might give it a go. Gracietoo does it herself, so if you are a nurse I am sure you could do it. It would be great to save the hospital trips.
PDRCHICK - thanks for that, I will look this up now.
LIMNOGAL - nice to see you on this site, but of course sorry you have to be here. Glad you are doing well.
CJSHARMA - imagine that was your first time to feel nauseous ! Zofran is great. I was slightly nauseous after the night, but I zapped that with the Zofran this morning. I slept well and hope to go for a walk today. I have read on a good few posts on the net where some women find the 3rd round the most difficult. So it will be interesting to see how you find it. You are doing so well that I can't imagine it will phase you.
Hope you all have a good weekend. It is a bank holiday weekend here, May Day, so there will be a holiday atmosphere around.
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PDRCHICK - just read that article and that's interesting what it says about the Claritin, i.e. the Neulasta creates histamines in the system and so hence you take the anti histamine Claritin, so that explains that. Thanks.
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Well, survived the long first day of weekly chemo and thanks to ladies here, I didn't get nauseous. It was 9am -3:30 pm in the chair...Next time it will only be about 4 hours. It was longer because it was the first time and they observe more (over an hour after for the Herceptin), but also because I learned they had only a steroid as an anti-nausea in the infusion and I told the nurse I needed more, and to check with the doctor , because she knew about my nausea history and had give me a suitcase of anti-nausea meds to go home with. My Dr is on vacationn but another Dr approved Zofran (I do really need it--long history of nausea .) So thanks to you gals for sharing your anti-nausea regimes and nausea experiences. My bad days are expected later, but we shall see. Started taking nausea meds tonight because I felt it coming on and based on NUMB's and PDR chicks or someone's post, which reminded me that my MO had said the same (though today was contradicted by the pharmacist who said to wait until morning for the home Zofran tables.) Thank you ladies!
PDR Chick, CJ, and others: Comfy and warm attire was key to chemo being tolerable! Thanks for all the tips--I used them! Also added fuzzy socks and old slippers, and an eye mask (I hate fluorescent lights.)
TEA! I love it and drink tons of various kinds. Had to quit coffee (which I also love) about 5 years ago for GERD reasons. Anyone with questions, hit me up. But I would say there is a definite difference with "quality " teas. Yes, they are pricier..but if you are buying your own, it is super reasonable on a per cup basis. When I go out, I typically even take my tea bags with me as they are vastly better than most places sell. And I take my stevia, because I like some teas sweet and almost no where has stevia. I could give a flying cat about what anyone thinks about this! (NW GOLDFINCH--channelling the spirit of Bill Maher here....!) I'm happy! I have special treat coffee, with a meal only, on rare occasion.
NWGoldfinch: Hope your day went well! I'm just so glad we are done! The new normal has begun! (Great Broadway musical with Green Day music from a few years ago, btw.)
4Hymn: Welcome to the group. I got hungry too, and ate a few crackers etc. Good to hear the port will feel better soon. (Also thanks to GRACIEtoo.) I had literally just gotten to the point of putting a shirt on without too much pain (from the bilateral mastectomy) and then bam! chest pain reappeared with a vengeance last night. Ugh. But tylenol (or steroids from infusion reducing inflammation) seem to be helping tons and as we speak it is much better.
CJ: My chemo orientation written materials said to use gloves if you garden. Maybe a good idea? I did have an outdoor cat we inherited when we moved into a house, and he ended up getting a terrible fungus infection that the vet told us came from soil near rose bushes. Glad your daughter is there to help with essential food runs and just for diversionary fun. My son is done from SF this afternoon into tomorrow and the company is nice.
LymnoGal: Also welcome to the group. This seems like a great, active group, willing to step up to the plate and share what is learned so everyone can profit from knowledge and experience gained. I feel lucky we are here! (Sort of. You get it.) When you lost your hair in the hotel, did you have a hat or chemo scarf with you, or were you forced to innovate a new bulky fashion look using a hotel towel?
I am so nervous about being unprepared for the hair loss (my husband doesn't call me The Girl Scout for nothing..), that I have a supply in a nubmer of colors and styles, and a wig on hold. But I'm going to buy one as soon as I decide for sure which style I'm most likely to wear when I have to go in to work (rare through summer but will be back in fall and stylist says I won't have even a man's short haircut until next March or April. So, I'm living that Girl Scout motto and being prepared...:)I am doing a "good things today lis"t for each day of breast cancer, and maybe the rest of my life, even if objectively some days might be considered "bad " days or things by some. I'm not doing a s&(*$% things list. Just the good. Today's good things: Comfy and warm "chemo" attire, that my chemo friends recommended; nausea totally manageable so I could eat and enjoy it; enjoyed time with my son watching "The Night Manager" (based on a John LeCarre novel) on AMC channel, and with my sister who came to chemo in the am and brought a great Kelly green chemo bag with a fabulous soft blanket in it. And my roses are looking amazing-bursting with color! All good.
I hope good things come to everyone this Saturday and Sunday. My big goal: to walk 10,000 flat steps. I can tell you I don't feel like it (and I love to hike; did 15000 just Wednesday, half a strong uphill....but I am sore and limited from port surgery on engaging in strenous activity . So if I need to do fewer, I will, but I like having goals.0 -
Morning all,
Just checking in to wish you all a good weekend. Glad to see that everyone appears to be doing well.
My hair is shedding like crazy now - I look awful - and for the first time, like a cancer patient. Oh it's part of the treatment I know, and I've been expecting it but maybe it's a little more traumatic than I gave it credit for. All that aside, physically I feel great. No much to say about SE this time round so Im very happy with that.
Numb - in relation to the nuelasta, or in my case, Lonquex shot - all very simple in my experience anyway. Just pinch a little belly fat and in she goes. No veins involved! The needle is so fine I dont even feel it. Hope this is the case for you too.
Lymnogal - Welcome to the group. I hope you find it a source of support and information. Glad to hear things are going well for you.
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ZOZIANA - good to hear you are on your way and over the first round, onwards and upwards. I am not completely nausea free today I took the Emend 80mg and the Zofran 8mg but maybe it is just that my stomach is a bit upset from all the meds I had today, so far, i.e. Zoton, antacid, then Zofran, then Claritin, then breakfast, then Emend and then steroid, and then Benylin and last but not least Anusol up my butt, so being attacked from all orifices
Getting ready to go for a walk because I think when we are doing things we forget about ourselves and it helps to get over the side effects. Then out for coffee (tea in my case) Thanks for the tip on bringing your own teabag, never thought of that, great idea.
GRACITOO - My hair is a disgrace at the mo too. I keep pulling out multiple strands and have a bald patch now at the side. I think I will go back to the hairdresser who supplied my wig and have it taken down to 1/4 of an inch and I want to have the wig cut shorter as there is too much bulk at the front of the wig and I think this makes it look more like a wig. Most people don't have naturally thick hair like that, so it draws attention, and I want to pale into insignificance.
I can definitely see myself learning how to do the Neulasta shot today. Thanks for your experience with it.
I am still in bed at 10.04 and getting fed up, so getting washed, dressed and out before I start to feel like an invalid.
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PDR Chick - thanks for the further explanation on the neulasta. My doc said he thinks especially for younger women it's the worst part because if you have more active bone marrow to begin with it's extra painful. He described it as a gnawing, annoying pain and recommended taking Advil about an hour before the shot is scheduled to go off. I totally spaced on asking about Claritin, but since this isn't going off til 3:30, I think I will send my amazing and patient AF husband to get me some.
ZOZIANA: so glad to hear you tolerated everything pretty well. Damn right you wanted anti-nauseas in the pre-meds. Glad that was worked out. Also, I love your plan about making a list of good things about each day. I'll add that to my daily "field notes from a catastrophe" notebook I'm keeping lol. It's basically a log of how infusion went, what meds I took when so I don't have to second guess myself, any physical activities I got in, liquids intake, and the most important part of my life: food. Love the Green Day reference. I worshipped them as a teen, saw them in NY a few times - great memories. I still put their albums on for familiar comfort - same thing with old episodes of the West Wing ha ha.
Here's my brief reflection on yesterday: The infusion itself was not bad at all. I'm getting adryamicin which I heard they call the red devil because it's so powerful. So I am visualizing little angry red pac-men chomping through the cancer. It is a weirdly comforting thought! After, i felt decent, so my husband and I walked in the park for a half hour to stretch my legs. Then came home and decided to "get ahead" of the nausea as I was feeling a litttttttle woozy. Took a Zofran, then a couple hours later a compozine. That was mid/late afternoon. I was good til 10:15 when I took another compozine. I set an alarm around 3:30 a.m to get up and use the bathroom ---- I heard when you're on AC you don't want that s**t sitting in your bladder for 8 hours. I also took another Zofran.
I woke up feeling pretty decent. My coloring is much better. And I mostly feel OK. Again, a little woozy.
Favorite tip to offer: Chimes ginger chews!!! They got me through points where I swear I couldn't be sure if I was *really* feeling sick or starting to psych myself out. Hugely comforting on the tummy and I'm using them to keep my doses of the anti nausea meds as far apart as possible. I like the peppermint ones.
Question: my doc also gave me a super low-dose Ativan (.5 mcg). He said A) it's good to manage anxiety, but also he thinks it helps a little with nausea. I'm curious how you folks may like to integrate it into your "cocktail"? I was leery of taking it too close to the compozine because that itself also has some anti-anxiety properties, I think.
Wishing you all a comfortable, happy day.
Liz
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This board moves fast! Wow!
I've felt great the past few days-- a slightly fatigued version of myself. I'm dreading my infusion on Tuesday. Someone had suggested Altoids & I did that last time. But now I associate Altoids with the chemo and I can't suck on them anymore without gagging. I suppose next time I'll go cold turkey and deal with the taste.
I'm going to try to combat the nausea and vomiting head on this time. I'm picking up a sea band. My husband got me ginger slices. I'll take my compozine immediately after the infusion. I see my MO before my infusion, so I don't know if he'll try a different anti nausea combo.
Last night we celebrated my husband's 40th with family and friends. It was so nice to be just normal for once!
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Numb - I write my replies as an email, so I don't lose them.
Sorry you are having issues with keeping posts. I guess we'll find out about the third round. I think I've been socializing too much. I should not have gone out to dinner the night I had chemo, but I haven't seen my nephew in ages and he's such a nice guy. I am happy I did it. I'm feeling really good this morning, but of course I slept like 9 hours. I only have a lunch with friends today, so that will be nice. Have fun!! I love when there is a Holiday atmosphere! Gracie is right - the shot is pretty easy. I could definitely do it myself.Zoziana - so glad to hear you came through with flying colors and feel decent! I love my Zofran - it makes my stomach happy! Enjoy having your son around.
My MO is very laissez faire about gloves because of the Nuelasta shot. I'd probably wear them anyway, because I hate dirty hands (yeah, the gal who does long bike rides and hikes and such hates dirty hands). I have the same goal today for steps. Love the good things list. It's such a good reminder that things are actually pretty good even with this diagnosis. I'm with you on the goals. I plan to take the boys (dogs - all three are male) for a 3 miler. I have some other things to do, but the house is fairly clean, except for the needed daily vacuum. Gracie - I'm with you. The hair is what bothers me most. I have lovely wigs and I enjoy playing with different ones, but when I take everything off and look at my head I sigh. My hair was always my best feature. Glad you're feeling good this round!
NWKGoldfinch - I love your red pac-men visual! I've been calling them the chemo ninja's, and as I had an American Eskimo named Kimo, they have morphed into mini Kimo's dressed as ninjas doing battle with Lenny the Lump.
I am also fond of Pepcid AC for those times when I'm not nauseas, just dealing with indigestion like symptoms. The Ginger chews sound fab. Ativan can act like Ambian, so I would only take it at night. A lot of folks swear by it and say it gives them the best sleep and they wake up feeling refreshed. I've had mixed results, but then again, Ambian doesn't do much for me. I'm feeling good this morning. Ready to take the dogs for a long walk a little later. I slept in for me - got up at 6:15AM (I'm usually up at 5:30 even on the weekends). I'm enjoying having my baby girl here. She's a real gem. I am so lucky in her. She ran out to In-N-Out burger last night. Yum! But, I think I'm over my burger kick. I accidentally ordered some stuff from Hello Fresh (I thought I had skipped the delivery, but guess I forgot, oh well - it's good stuff). So I'll make one of those. I find the one thing I really haven't been able to tolerate is tomato sauce. Even thinking about it makes my stomach crawl. How bad is that. And that's even when I'm feeling well. As I love Italian food, this sucks, but if it's the worst thing, I'll take it.
Hope everyone has a lovely Saturday!
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TWaz - you snuck in on me! So sorry about the Altoids. That's not fun. Do you get anti-nausea meds in your IV before the chemo or steroids? I do. You may want to ask about that. It really helps. Happy Birthday to your Hubby! How fun. Yeah, I've learned that anything I can do to feel normal helps. Even just going into the office, or going grocery shopping. Or having a clean house (it's only me - so if I'm really tired, the house is not as clean as I like it). Never thought the day-to-day things would be comforting. Hugs! Hope this round goes better!
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Zoziana-I had a couple of chemo scarves with me (that Girl Scout training sticks with you, doesn't it?), so the hotel towels were spared. But, after the post-breakfast "I can't handle any more hair coming out" meltdown, I found a very sympathetic stylist in a very nice salon who treated me a head massage and a very cute pixie cut that got me through the end of the trip. Silver lining noted.
On the other hand, I have always had long hair. As the stylist cut my hair, I went from looking like me to looking like my mother to looking like my father to looking like my grandpa! He was kind of cute for a grandpa, but I'm not surewhat color that lining is....
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Gracietoo - lots of shedding happening here too. We all know from day 1 it's coming, but nothing really prepares you for how much it sucks when it happens. It's exactly what you said - now you look like a cancer patient (it's official, you have cancer!). To minimize the mess I think I'll have my husband buzz me later and I already know how awful it's going to be. I'm already over the whole wearing things on my head.
Numb - I'm super paranoid about my wig looking wiggy. I have to figure out how much is psychological - I know it's a wig so everybody must know. My super opinionated sister liked my wig, so I have to believe it looks normal.
Zoziana - I'm surprised they don't routinely give you anti-nauseants during your infusion. I get 2 different ones during mine. I love "good things today". It's so easy to get lost in cancer world that you forget to pay attention to things just happening in real life.
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Its official, I am definitely getting chemo brain. I wrote a post about Neulasta and it being €2,400 euro from the chemist, that's $3,200 dollars and I mustn't have posted it because now I can't find it. I can't believe how this chemo is affecting my brain. Anyway, I got the Neulasta free as we are on a drug scheme in the pharmacy and we don't pay for anything over 130 euro a month.....phew !!! I can tell you I wouldn't have paid 2,400 euro as I have at least another 2 of them to get. The nurse came down and she let me do the injection myself, showed me what to do but I did it, so I can do this myself the next time. I went for a walk today down by the lake and when we came home we had bread rolls and sausages and they were yum. There is nothing wrong with my taste buds. I felt great for the whole afternoon. I am a bit tired but it doesn't stop me from doing anything I want to do. I am in bed now at 20.38 but that's okay as I went for another walk this evening and I can't keep my eyes open now. Hoping that the effects of the Neulasta don't kick in too soon. Does anyone find these side effects severe ?
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Well round two of Taxotere was Thursday and I just went to my son's soccer game and cut the grass! Better quit while I'm a head...time to fold clothes and watch the tube/movies the rest of the night I think. Hang in there everyone!
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hey! I just wanted to get added to the group! I've been reading for a while and it is such a positive group, I decided that I would actually join the conversation. I had my first chemo treatment on April 12 and my second will be May 3. So far things have been manageable. I got one of my teenage daughters to cut my hair today to about a quarter of an inch! The shedding got to be too much. It was more upsetting than I thought because it's an outwardly reminder that I'm going through treatment. Because mine is every three weeks, I almost forget at times!
Good luck to everyone and although I hate we are in this situation, I love being able to join such a good group. I'll try to figure out how to join the Facebook page.
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Wellshoot - love your user name! Thanks for joining us, sorry you have to! Sounds like you have a handle on things. If you want to join the Facebook group, send me a PM with your email address. I'll add you.
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just curious (I'm full of questions) for those of you who have a port... How was your experience with having it imported and the pain afterwards? I know everyone's experience is different
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I think port placement is pretty standard. It's minor surgery. It's annoying (like a stiff neck) for a few days, but it gets better and pretty soon you don't feel it.
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Anyone get a rash in their armpits? I have a weird rash in both of them. I show it to my MO yesterday. He does not thinks it's an allergic reaction, but I'm getting worried. It is not getting better. I had chemo on Monday and took my shot of Tuesday. I'm not sure when the rash started. I noticed the pain Thursday. I've stopped using deodorant and I'm putting steroid cream on it, but it's still there.
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My port remained somewhat painful the whole time I had it.
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Hi all! Had my first Taxol/Herceptin on Tuesday, 4/26.All was well until late Thursday night when the worst leg pain ever showed up. Yesterday at work was awful, and I was in tears last night.
I have lots of conditions, some painful --fibromyalgia, Hashimoto's--but this slayed me.
A little better today. Can't get anything prescribed without going in, which I may have to do. This is awful.
On the plus side, no nausea or other SEs!
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Mizzoh - Glad you found us! Did you have the Nuelasta shot or was the leg pain caused by the chemo?
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weRwarriors - At first I wasn't sure I liked the port either. I was very resistant to it. When I first got it put in, it was very sore... and that lasted for about a week or two. I also accidentally bumped it while it was still healing and it was quite painful. Now, I don't even notice it much. I am thankful to have it for the infusions as it's much easier. I can't imagine do these hour+ long infusions any other way. I've even been to a few hot yoga classes and I haven't had any issues with it at all.
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