Anyone starting chemo August 2016?
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Hi, just wanted to pop in again and let all know I sent a PM to Lori and just heard back. She's doing OK, just overwhelmed with appointments and needed a little break. Her chemo appts. have gotten mixed up so she is also trying to sort that out. She said she'd check in very soon. Hugs to her!
I've recovered from my allergic reaction yesterday, but the headache is just starting and I'm waiting for my Neulasta pod to go off! Such an exciting day! Hair continues to leave every part of my body, but my head is weird. Most is smooth but then there's a pattern where it feels like velvet. I'm waiting for an image of the Virgin of Guadalupe or someone else to appear! lol
Ajbclan, I laughed (but felt badly) when I saw the post about your pup. I still remember one year when a cocker we had ate a whole Easter basket of one of the kids. I called the emergency vet and they said to give her straight hydrogen peroxide as she would hate the taste and it would make her throw up immediately. We got it into her mouth but nothing. Called the vet again, they said to give her more. Did it a couple of times, she never threw up and went around licking up the peroxide off the patio! She survived :-)
Hope all are doing better today. Yes drink, drink, drink! Especially those of you with little ones, you're my heroes! Speaking of which, has Annie checked in lately? Hope she's doing OK also. So many of us here, I think I miss some people. I keep trying to update the list Michelle sent out.
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Dara, You are a breath of fresh air! Even though I am officially part of the September chemo board I am enjoying reading your posts on this one. I hope I can be as positive as you are come next Friday when I have my first treatment. I'm getting more scared and nervous with each tick of the clock. Very scared of side effects and well, losing my hair too. Probably the same as everyone else. You are truly an inspiration!
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Seq24, you'll be OK. It is just so very hard with all the anticipation leading up to each step! We all have bad days, me included. I just know that every single thing I'm doing means I'm going to be around for a very long time. Anything else is unacceptable. They have so many things now to counteract the SEs. (But I do wish they had one for the hair!!! I guess the cold caps do that, but I didn't think I could keep up with all the guidelines etc. And I've always been one to blow dry, use curling irons, etc. I find scarves are the easiest as my head is still a little sensitive to tight things. Believe me, everything you're feeling is normal, and while chemo sucks, it is doable. We just don't know that until after each infusion. We'll all be thinking good thoughts for you for your first!
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Thanks Dara! I went and got a free wig from the American Cancer Society today. Because of the nature of my job (working with kids) I have to look like the same person they are used to at all times so I will be having to wear the wig. I hope my head isn't too sensitive. Does wearing a cover on your head under the wig help? Praying for no side effects so I can keep working.
Best wishes to you and thank you!
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HI VLH
About 36 hours after my first infusion of TC I woke up with severe headache and than vomiting for hours on end. Finally went to ER and was admitted to hospital for four days. Currently I am taking no medicatons, I do have ativan if I become to anxious and reglan for nausea but so far I have not needed. Today I woke up feeling stuffy and sore throat and very grumpy not sure why assuming its the chemo. Feeling guilty my 19 year old daughter is calling me at least 10 times a day from school saying she is homesick and she doesn't know if she wants to be at school. I actually told her tonight I can't take these constant calls, its making me very sad and I am not feeling my best...now I feel so guilty for snapping at her. Very nervous for next round on 9/8 but if this is what is takes to get better I will do it. I felt so great yesterday I almost forgot I was sick. I am so happy to be able to talk to this great group of ladies!! Thanks for all your support!
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Seq24, yes pick up a wig cap or two. They definitely help. I have two cute wigs I wear when I don't want to feel "sick." It's just that after a couple of hours I need to take a break. Completely understand about the kids. I was in education for 24 years so can relate to being normal around kids. Did you go to a local Cancer Society? I'll have to look into that.
Tishabe, so sorry about your reaction. I got the headache after my first, but am still waiting to see if I get it after yesterday. My son's first year of college he wound up coming home every weekend for the few months, then he was good. Your daughter is probably homesick AND worried about you. It's a hard time to be separated. Good luck<3
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Yes i went to our local American Cancer Society this morning. I got a human hair wig but they also had synthetic. No charge! But the experience was something else. The lady who was helping me (well actually not helping me) threw some wigs down on the counter and said you can just try these on and put the ones you don't want in a pile. I told her I didn't even know how to put a wig on correctly and she said well just put one hand here and the other hand there, flip your head down and put it on. But it might take a few tries. Then she just stood there. I ended up taking one I didn't want but she told me I could bring it back if I found one that matched my hair at another ACS office close by. I asked her if she could help me locate the color and style I wanted and she said no that I would just have to call around the country (yes country) myself and have them ship it to me. So I actually did that. Got a call back from a nice lady in the middle of Wyoming saying she found someone locally (colorado) that could help me and that the person I dealt with this morning had no experience in fitting wigs! So back I go again tomorrow. Kind of ridiculous, but at least it's something to laugh about. Hope you have better luck than me. Good luck!
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you all are so lucky that your free wig program has some good ones! We have the same program here in Canada but the wigs that were available were awful!! I couldn't find a single one that was remotely attractive.
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Ohmigosh, Tishabe, that sounds terrible. I'm so sorry you went through so much. My mind empathizes with your poor body going, "DANGER! I'm being poisoned!" and responding accordingly. No wonder you're apprehensive. Had the oncology staff seen that happen before so they could formulate a plan of possible tweaks that might help? Alternatively, did anyone at the hospital have ideas? Fingers crossed for things to go smoothly with the second round.
I live alone and worry that something like that might happen to me. I have amazing friends, but few would be in a position to take care of my 50 pound dogs if I landed in the hospital unexpectedly. My dear friend took care of the dogs far longer than expected when I needed a second surgery, but he's nearly an hour away and would have to coordinate with another friend who has a key to my house. Scary stuff, this blasted chemo.
I'm supposed to have my genomic test results by 9/12 to address the conflict between my biopsy (HER2 positive) and solid tumor pathology report (triple negative). Lots of delays in my treatment, but I don't want to pursue the wrong treatment. :-(
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Hi all. Had my first follow up with my MO since my first infusion. My labs came back great and she said the way I felt after the first treatment, should be how I typically feel through the rest, just more tired if anything. They are adding Benadryl and Pepcid to my treatments since I had the adverse reaction to the Taxotere like some of the other ladies here. Second infusion is tomorrow.
Lisbeth-glad you love the new PA. It's so important to like our doctors and feel comfortable talking to them.
Dara-Thanks for checking in on Wenchie. So glad that you heard back from her, and that she's holding on.
Seq24-sorry to hear about your negative experience when you went looking for wigs.
Hope everyone else is doing well.
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VLH you nailed it on the head for me, that is exactly what I'm afraid is going to happen, that my body is going to say, "Danger! you're being poisoned!". I have such an overreactive barf mechanism in my brain, and when I start, I don't stop until I'm in the ER. And I'm allergic to compazine, phenergan, and reglan. But Zofran has been a miracle drug for me, haven't had to go to the ER for the barfs once since Zofran. So hoping it will be my magic pill through all this.
I think my MO took me seriously when I told her this because my IV pre-meds are: dexamethasone, Aloxi, Emend, pepcid, & benedryl and they gave me both pill and disintegrating forms of Zofran. Does that sound like normal IV Pre-meds? I feel like a walking pharmacy.
That is scary living alone and going through this. You have your dogs and they provide great companionship, but can't exactly take care of you or themselves, and then to have to worry about them. I think there is a group where I live that takes care of people's pets when they are unable to temporarily, so the pets can go back to their owners when they are ready to take care of them again, kind of like temporary foster homes, but then I live in the land of retirees, AZ so there is a lot of need for such things, it may not be available other place but might be worth looking into. You should try to work out a plan for your dogs though with your friend, find a way to get him a key if you feel comfortable with him having one. If you need an extra key, have your friend make one and then have him/her mail it or bring it to your friend that watched your dogs. You probably won't need it, but having a plan in place can really help with the worry. I hate asking people for help, but most really want to help but don't know what to do until we tell them.
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Sensitivehrt - good luck on your treatment tomorrow. Glad yours labs were good. It's nice to hear from others doing the CT chemo and that it's doable. Getting more and more scared as Thursday approaches. My husband is sick with some sort of awful virus so been holding my breath all day hoping I don't catch it.
Do they generally draw labs the day of your infusion? Do they wait for the results before they begin, or did you have them drawn earlier? They didn't tell me anything about labs and haven't drawn any labs at all since I switched to this MO. I hate not knowing.
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I'm suppose to do labs 1-2 days before my infusion. Do you have someone going with you to your infusion? CT is doable. Will be in your pocket on Thursday, and will try and check in tomorrow eve of not to tired
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I had my second chemo today and I had the same allergic reaction you did Dara ... It as very scary but the nurses swarmed me stopping the IV, giving me oxygen, every one taking my vitals then restarting the chemo slowly. I guess my face was beet red .... Which panic set in for all that looked at me. My chest is still sore tonight. I hope everyone rests well tonight.
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lisbeth your premeds sound totally normal. I do all those in pill form (I use rinitidine not Pepcid- which is the generic version of Zantac...but same thing basically) glad they have you well ahead of the nausea. If you take premeds and stay on top of it the second it hits, you should do great!
I do labs 2 days before infusion, and have my MO appointment 24hrs before to go through results and make adjustments where necessary. Since neulasta is only given if labs show a necessity, he will also make a determination if it will be added for round 2 at this appointment.
Feeling better already but boy did my MO nurse read me the riot act about taking care of my body even if I'm feeling well! She said 2 litres of fluid a day minimum. Soups, juice, shakes and even pudding count... So not drinking water is no excuse. I know better now and have smartened up!
My head/scalp is officially hurting... And my long hair is starting to come out. Sad day... But this physical manifestation of what's happening inside my body may stir me to remember all the things I gave to do to stay healthy. I have an appointment at the compassionate care/wig store Friday for the head shave and fitting. I was going to hold off until Tuesday, but it's so itchy and tender I don't think I can.
Caligirl- hope you feel ok today and the effects of the reaction don't last long!
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Lisbeth, I know that sounds like a ton of premeds, but I know most will be part of my pre-med routine since I reacted to my second round. Caligirl, My chemo nurse said that the breathing, chest pain, and flushing is due to the taxol or taxotere. It is common to react on the second infusion because your body recognizes the drug the second infusion and says Oh hell no, I don't like this! She said the most common reaction to the Cytoxan is sinus pressure and head cold symptoms. I was surprised they said I'd be also doing Pepcid. I said I thought that was for stomach and she said it has other advantages as well. Interesting huh?
My pod alarm went off last night and the neulasta went in with no problems. Last time I woke up with terrible knee pain. This morning I'm still fine, so either I"m not reacting yet or the Allegra worked better for me. Sure hope it continues. Still no nausea at all. Have never been sick once since my first infusion. Just a touch of constipation, but I always start right away with Miralax to avoid it. Also rinsing mouth about 5 times a day with baking soda.
Again, I'm so thankful for the posts on this site. You all are so great about helping us recognize issues right away and offering things done to help alleviate the problems. I reacted on Monday really quickly, but my ruse had already left the room and was in the restroom, lucking right across the hall so I could see her come out. My DH was with me, but could only hold my hand. If anyone feels weird, be sure to speak up!!
Hope all are doing ok today, especially those either having or getting ready for infusions. Don't be scared, just be aware, know your body, and speak up!
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Lisbeth, also, I have labs drawn the day of treatment, then see my MO and get results, then go to infusion center. Makes for a long day, but I have a bit of a drive so it really helps not having to make multiple trips to CoH. It's just a little hard though since I don't have a port or picc line so all the pokes go into my right hand. Found the best phlebotomist whom I know request when I go back for blood draw. Other times I have had HUGE bruises that last for 2-3 weeks. I was worried about the straight IV treatments, but I seem to be tolerating them fine so far. It does help that I just have the 4 infusions and no herceptin. I would have done something different with a different treatment.
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Happy Wed everyone- I seriously went back 2 pages and tried to take some notes- all of your posts are so meaningful and helpful to me, and I feel like I don't acknowledge and do them justice.
DaraB, Caligirl- so glad you're both ok, as well as they others that reacted so strongly. Of course makes me a little more nervous for the next one, but will make sure the nurses are close by! Because of all the reactions everyone has had- I decided to grab the paperwork back out and see what I actually got that first round: Dexamethasone (Steroid), Diphenhydramine (Benadryl), Famotidine (Pepcid), Palponosteron (anti-nausea), and those lovely chemo drugs, and home with the "pod". I am also to take the steroid starting the day before - by pill, and that goes through "day 2".
I am so thankful for everyone's frankness - from the allergic reactions, to the dryness in the nether region...please know you are all helping with the posts.
DaraB- your posts are great, funny and informative. I'm glad your little pup was ok after all that slurping up of "stuff"- flipping dogs! Fireheart43, VLH, JandJmom, kenzielulu- I love the funny posts, the wardrobe you and others are wearing....the "danger I'm being poisoned" (maybe THAT should be a shirt!)....thanks for making me smile (and I know others as well!).
Kacey- I hope you're feeling better and have had a chance to talk to your Dr.
Lisbeth- thanks for your frankness, and your funny but frustrating comments about your husband's illness! Sometimes you just want to spray lysol everywhere and make a lysol bubble around yourself!
CandyHB- So hope your son can listen to you with the smoking....even the neighbors smoking briefly in the backyard is irritating more now as my sensitivity is lower.
tishabe- I think it's sweet your 19 yr old is calling so much....I agree with another poster, homesick mixed with worry. Esp if you ended up in the hospital! I hope my 13 year old at least calls when she leaves home in a few years!
Hope floats- thanks for keeping it real regarding how we feel, and what's really happening. Hope you're doing well now. You inspired me to keep exposure down, and fluids up.
Arlenew- I love that quote! I think I may have to use that
My nurse did say that anything that melts is "fluid"- so even ice cream! Get creative! Regarding blood draws- I had had one right before my first infusion, but the nurse said she would be doing 1st thing on future treatments.
The dog is fine, of course. Lots of love to you all....thank you for being here with me!!
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Dara and Hopefloats - thanks for letting me know my premeds are normal. I wonder why they haven't done any blood work on me. My surgeon never did any, my first MO did blood work over a month ago but only because I asked him why he wasn't doing blood work. Weird.
ajbclan - I have 13 year old daughter too! How is yours coping? Mine doesn't seem to notice I have cancer whereas my 10 year old son thinks that if he is perfect and takes care of me, he can cure my cancer. I don't think either are healthy attitudes, so I need to read up on what to do, but just getting through the daily parenting keeps my head spinning.
Rant Warning! My sister is in town so we're going with my mom to look at wigs and scarves again. This is going to sound real horrible, but my sister keeps saying things like "be positive" and "I have lots of friends who have gone through cancer and are fine now". I find this not helpful at all. Is it because she's my sister and can get on my nerves or does that sort of thing bother you guys too? Last night as I was leaving she said, "think positive, chemo is what you make of it". Really?! She is recovering from a concussion so I felt like telling her, think positive and your concussion will go away. And I'm one of those people that believes in positive thinking, meditation, deep breathing, I'm into all that stuff. But when it comes to cancer, someone telling me to just think positive bothers me. And she keeps telling me about someone I met ONCE that has stage IV colon cancer and keeps making me look at pictures of him with his chemo drip at home. It does not make me feel better. I feel like I'm being so ungrateful. I should just be happy she came to visit.
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LisbethS--OMG you have to read this. Start on page 33 and read down from there. Start with the post by Oakmoss. I posted a very similar rant right after her. Isn't that so irritating!!!
https://community.breastcancer.org/forum/102/topics/833446?page=33
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seq24 - Thank you so much! I loved it! You and Oakmoss said exactly how I feel. Just last night I was told the same thing as you about joining a local (physical) support group instead of online, as if you all aren't real people. I can type my feelings so much better than talking in person which would just make me ball my eyes out and no words would come out. I am going to try to find a local support group but not until after chemo, but it won't be like the support I get out here, it will be different and serve a different purpose, but I will still need this forum too. I never knew there was a rant area! Thanks so much for sharing!
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Round 2 in progress
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sensitive,,, your pic made me smile and then laugh in the best possible way.... Your expression is exactly how many of us feel!!!
You are awesome!! Here is to manageable side effects!
And lisbeth... Tell your sister to shut the hell up. Ha.
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Hope-glad it made you laugh and smile. Took them 3 pokes today to find a vein
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Hi all!
Welcome to everyone new! This is such a great group
Sorry I haven't been around much. I was pretty sick on Saturday (mostly couldn't do much but rest) and then busy on Sunday and I am SUPER BUSY at work. I have had a rough couple of weeks - I really shouldn't complain too much because my SE's aren't horrible, but the back and forth with the bowels is pure torture. I'm usually a really happy and positive person, but I have been moody and angry and I can't seem to shake it. My onc restained my tumor (biopsy said I was ER+/PR+ but the slides looked negative) and I am triple negative. I found out today. Hair is hanging by a thread - still wearing it up to work, but will shave it Thursday night (when the clippers get delivered).
Good news is that baby girl seems happy and kicking up a storm every day.
Dara - thanks for always being so positive and sweet! I love your new profile pic. I'm so sorry about the reaction. Glad you are feeling better! Thank you for the update on sweet Lori. This is a tough road, for sure. The gravity of it all can hit you like a ton of bricks.
Hopefloats - Sorry about the bladder infection! That can be scary. I agree with you - I thought I was clear after 4 days, then another round of side effects hit me around day 7-11. Ho hum.
Lisbeth - glad you like your new PA! And honestly, I would be furious with my sister. I might tell her where to stick it. I mean "Chemo is what you make of it"?!! Really?
Sensitive - thanks for all the great pics! I got lots of sticks my first time. I did not like that.
Love to you ALL!!! I'll try to stay more on top of it. This is a bit too much typing for my phone and I rarely use a computer on the weekends these days.
Annie
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Go Sensitive! That pic is awesome!
Lisbeth- mine daughter seems fine.....I think because I just told her- they're going to kill it first, then take it all out, and then we will move on like we always do. She's had heath issues herself- at the age of 5 she was hospitalized for Guillain-Barre Syndrome (something to google in your down time- haha). It was very scary, as we had of course never heard of it. She's fully recovered from that thankfully. She's had daily headaches now for the last 2 years...scary to watch your child go in for a brain MRI/MRA, cat scans, etc. But they're manageable now even though no direct answer. And then she's watched her GMA go through multiple health issues, and watch me deal with them....so I honestly am just pissed (oops- is that a rant word?!) that she has to deal with something else....so trying to keep as much normal as I can while being straight forward with her.
I love Hopefloats suggestion for your sister too Lisbeth! I was kind of thinking something along those same lines!
Seq24- I read that rant board, and now I just feel lucky so far to not have much stupidity thrown my way yet. I loved the video that was attached too. It seems like people need to try and "help"?? Why do you "have" to go to a in person support group. That would not work for me. Also- I think everyone here is more free to express things...would we sit around and talk about how our privates are drying out and what to do?!! Doubt it!
I learned a long time ago, when my dad passed away, that people are naive, and say stupid things. So my comment has always been is I hope you are lucky enough to stay this naive! People can't deal, they don't know what to say- and those of us that have dealt with crap know there isn't anything "correct" to say. My word for everything is it SUCKS...and that just fits right into this diagnosis as well.
I made it clear to people after my crying episode in front of others, that look- basically don't pity me (I was nicer than that)- flip me off- I'd be much happier with the finger than that poor you hug.
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I sure am glad that I am not alone in the ranting department! I just can't believe some of the stupid stuff people have told me. Including close family members. The Steam Room board was just the place to vent the frustrations I have had! I didn't know if that was appropriate here but on that board anything goes! And it's a good thing! I'll be seeing some of you on there soon! There is a lot to be angry and frustrated with this process and not just having to listen to the garbage that others think is ok to dish out to us. I feel we are struggling enough and don't need to listen to that!!
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Seq, I think most of us have had people say dumb things, and yes, when people say just stay positive, I know someone who... and all the other platitudes, it makes us fume. I learned from my sister who also had bc to simply speak up. While we want to say shut the hell up, maybe just calmly say, "I know you're trying to make me feel better, but I've learned that every case really is unique, and hearing about others' experience isn't really helping. I am positive, but would rather not be reminded of it all the time. Just be there and love and support me." Then to yourself say "So shut the hell up" :-)
I also agree about the online vs local support. I just haven't had the energy or desire to find a face to face group. I can sit in my chair with my laptop, and I can come on here several times a day and feel support. We get to know each other, not just with the disease, but other things going on in our lives. I love that many even get together in person when possible. I'd love to meet up with some of you who are close by when things settle down a bit. And, sorry, I for one think I'm a real person!!!
Sensitive, love the picture! I've been so fortunate that they get the IV in the first poke. I have really ugly veins on my hand though, and I drink sooo much water prior that it seems to help.
Today doing much better, but really tired. So happy though that so far no extreme bone pain after the neulasta. Last time it was brutal. I"m wondering if the slow release body pod is easier than the regular injection? And it sure was great not to have to drive back the next day!
Annie, so very glad you're doing OK. When is your little baby girl due? You are just amazing.
Hope, I hope you're feeling better. Bladder infections can be so tiring, and on top of the chemo, you must be exhausted. I've thought of you often today as I was a bit queasy and have had to force fluids.
Cali, did you recover from your reaction also? I think anyone who gets benedryl first doesn't have the allergic reactions.
Ajbclan, sorry about your daughter's migraines. My SIL's brother had Guillane-Barr Syndrome his first year of college and it was very scary. I know it can have a very long recovery period.
Hope everyone else is doing ok.
Dara
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Dara, I love your posts and you are absolutely right. Someone said to me the other day when I was expressing my fears of chemo and the length of time it would take "well, at least you know you will live 20 more weeks". WTF (and that is not a phrase I use often!) I am just glad I am not the only one experiencing these ridiculous comments. I could fill pages on here with the stuff that has been said to me in the past month. I would have online support a million times over a group. Any day! I have received more caring, encouragement and support on here in the past month than I have from anyone else, including family! You are all living breathing people going through the same exact thing. Who better to turn to with all the uncertainties that go along with this awful thing we are all dealing with!
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BTW, seq, if you don't mind, in what area of the country (or world) do you live?
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