Anyone starting chemo August 2016?
Comments
-
Hello everyone. I haven't posted anything for a long time but have continued reading all your posts. I just sent husband to store to try and get me something i can eat. I had 2nd round of chemo Friday and I am figuring out that 4th, 5th and 6th days are the worst with the carboplatin and taxetore. Abjeclan I think we have the same regimen so Im really with you! I told husband chemo feels like your worst hangover comebined with influenza and throw in bone pain also
Is that a good description? I think he understood that. Hair is really falling out now that my scalp hurts. Sorry to be so whiny, just feeling 😔 today.
0 -
seq, I think, realistically, you may want to reconsider driving children until at least you are 5 days out. The liability is tremendous should something happen. Especially if you are coming straight from chemo as you will be driving "under the influence" of drugs. Be sure you at least alert parents of your condition so they can decide and then get their approval in writing. You need some sort of backup plan. You will probably be well enough to watch kids in your home but the driving scares me a bit
0 -
It scares me too, and I did talk to the dr. today about it. She seemed confident that I would be ok, but it does make me nervous. But I also may not have any other options if I want to keep my business going (which I have to)
Got the bomb dropped on me this morning that I will be starting chemo next week Friday. 20 weeks of AC/Taxol. I'm absolutely terrified of what this is going to do to me!
0 -
Dara - I like the "blame it on chemo brain" excuse. I think I've used that more than a few times.
Welcome Tishabe, Wonderwoman, Sweetrain, & seq24 - Sorry you have to join us, but this is an awesome group of ladies.
Good thing we're running out of days in August because this group has grown by leaps and bounds since I first joined. Of course all are welcome. Just wishing none of us had to be here.
CandyHB - I hope your son will take a good long look at all you are going through and decide to quit smoking. That would be a wonderful thing to come out of this difficult time for you.
Kenzielulu - Great to hear from you again. Sorry about all the SEs.The spray bottle is a great idea. I took stock in flushable moist wipes before this all began in anticipation of any diarrhea. I have been dealing with the opposite, but the moist wipes are a Godsend for that as well. Being sore there for any reason is never fun. You are not alone in having irrational thoughts at times. I'm pretty sure we all do. Every little ache or pain is now suspect in my book. Things I'd have never even thought about before can cause alarm.
Caligirl - So far none of us have found the fun in laundry. Guess we can all stop looking.
Lisbeth - That sucks that you had to reschedule your chemo, but I am glad you stood your ground and demanded answers. There is no way that medical professionals should treat us with less than total respect. We deserve things explained to us clearly so that we understand and can make informed choices. Sadly, sometimes we have to take control and advocate for ourselves. It should be easier than it is. It's good you and your family can have your boob jokes. Humor lightens the mood for me as well. You are right that the dog could mistake your boob for a toy. I tell people I chose reconstruction over a prosthesis because I didn't want to always be cleaning the cat hair off my boobs.
Kaceyr - Oh dear! Wish I could do something to help you and that you felt better. I don't know what regimen you are on, but some are definitely tougher than others. I'm guessing you are getting infusions every 2 or 3 weeks? Since you now know how ill you feel, is it possible to arrange for someone to stay with you next round? Even if it's just for a few hours each day to check on you and help you out. Lisbeth is right that you should call the doctor on call any time you are having bad SEs. Most women have a tendency to just grin and bear things - DON'T. I know you are in a tough spot because of not having the pain meds, but you need to reach out. Do they have any kind of services where you get your infusions where someone can help you wade through all that insurance stuff? The cancer center I go to has a financial counselor who is there to work with patients who are having issues in that area. It can't hurt to ask.
seq24 - I do my infusions on Fridays so that I have the weekend to rest up for work. My current regimen is weekly (Taxol for 12 weeks), and I am managing. Even though I tend to feel pretty good on a Saturday, I try to keep things light on the weekends so my body can get rest. I drive myself to and from my infusions, but I always have someone on call in case I don't feel up to it. The biggest culprit for that is the Benedryl I get as a premed. It tends to make me loopy, not tired. The first week it was pretty intense, but the nurses adjusted it so that I get the Benedryl over a 1/2 hour rather than 15 mins, and that has resolved the overwhelming "stoned" feeling for me. You will definitely need someone to take you there and home the first time as you have no idea how your body will react. Another thing I would advise since you will be around kids is to take every precaution to avoid getting sick. I work in a school setting and have stocked up on hand sanitizer, gloves, masks, and lysol wipes. You'll want to be really open with the parents and kids and let them know you have to be careful. I told the students I work with most that if they even think they feel sick I would give them a mask to wear. As my MO told me, "think sanitizer, sanitizer, sanitizer." I keep a pump of it in the car, at my desk, in my work bag... You get the picture.
0 -
Thanks Firehart. Can I ask one more thing? A nurse told me that the way you feel during and after the first treatment is the way you will feel for all of them. Are you finding that is true? I have heard so many stories that one week can be great then the next one you are in bed for a week unable to function. I worked in an elementary school as well as my home childcare business for the past 14 years. My MO told me first thing that with a compromised immune system I absolutely should not be in the germ factory of school. I had to resign that job because of this so now all I have is my childcare business with 6 school age kids 3 hours a day. I am already a germ freak in my own house and they are already in the habit of washing their hands before they do anything else when we get home. I asked about the whole Benadryl thing today and it didn't sound like I had any option but to get the super dose very quickly and then just be out of it. I'll have to ask if they can spread out the time in which it is given. My infusions will be on Friday as well for the same reason as you. The thing is I will take kids to school go to treatment and be home in time to pick them up after school. Really concerned I cannot drive after all that Benadryl. How long does it hang on? Maybe drinking a lot of water will get rid of the effects sooner? I do have help with the kids on Monday as I was told I may not feel like doing anything then. That is a horrifying thought to me. I am used to working at least 50 hours a week and the thought of not being able to even function is pretty scary to me. I have to have AC first. I hear that is bad! I have heard varying stories on the Taxol, which I will have after the AC.
0 -
Karey59- we do sound similar! I've been up and down today- actually vacuumed the house, but now burned out.
Seq24- I'm doing diff drugs, but they did give me Benadryl first (I have no idea how long each thing was honestly). I felt loopy and out of it for a bit, but I was there 4 hours and would have been able to drive home afterwards fine. I felt pretty good first few days, where others sleep....wish we all knew the answers! I met someone on Instagram who is 10 years out from BC- I asked her last night about how she felt as the treatments went on....she told me she felt worse after the 3rd. So unfortunately anything seems to be an option, I guess we just need to be aware.
0 -
I've wondered as well if each treatment you feel different. I was told by my Dr. that I would feel worse after the next one. From what I've read on here, it varies so much. I'm going to treat each treatment separately and not wait for what I think it's going to be. It will be what it will be. I don't have a lot of control over it. What I do know is that yes it sucks but I also know after a few days I will feel better!
So let's talk constipation lol - what's working for you because that is where my problem is now??
Thinking of all of you.
0 -
seq14
- My MO said that I might have the same "low day" each week, but I'm not sure if that's totally the case. I find that my lowest day falls when I get the least rest. Sometimes that is Monday for me because I tend to be so hopped up on the IV steroid all weekend that I probably do more than I should. But what are you going to do when you feel energetic and somewhat of an insomniac? I know some people will nap if they feel tired, but I have more of a tendency to push through because a nap often screws up my night time sleep pattern. I found the first week the worst for that, but then I just made myself go to bed on a schedule during the week. Or at least I've tried to.
- It's good you're already a germ freak. I have been anything but most of my life. So I've had to really adjust. I don't have kids but do have multiple pets. Thankfully my DH handles the cat and bunny litter boxes. My MO said if I HAD to clean them up that I needed long gloves, a mask, an eye protection for sure.
KZ - I agree that each treatment is like a different thing. I am told that some of the SEs are cumulative. Egads! If I have cumulative constipation I might as well just mix some cement and patch myself closed. Speaking of... the MO said I could use senna, but that senna-s would be better. The senna-s has more of a softener than just the senna. I had brain surgery last fall (hey, I was pretty impressed they said I had a brain), and was by no means allowed to strain. They set me up with senna and Miralax. Ugh! All that did was bloat me and make me feel crappy (pun intended). I have an herbal supplement I've used over the years, and that did the trick that the other two meds never did. So when the constipation started again with chemo, I started with the senna. Same lack of results (only now the bloating was accompanied by his BFF rectal pressure). Checked with the MO, and she said the herbal was okay. Now I'm feeling fine. But I anticipate having to use it periodically to steer clear of issues. It's called Cleanse More. Here's a link to their site so you can check it out. http://www.renewlife.com/herbal-cleansing/cleansem...
0 -
Had my first TCHP infusion today. It was a long day - insurance wasn't approved yet, so had that delay. They finally faxed approval. Then the lab was down for a while so didn't get my C part until that done. The infusions of premeds and the four treatments took 5.5 hours. I comfy in my oversized t-shirt (logo "Fight Like a Girl" I ordered from CafePress) , pajama bottoms and spa socks. I handled everything well - no reactions, not even to the benedryl which didn't make me drowsy.This is good because the next infusion 3 weeks from today, I should be able to drive myself. My husband dropped me off before and picked up after work. So far so good. No nausea or taste changes. I iced during the Taxatere portion. Have a on body Nulesta thingie. Need to wait and see what SE's come on Wednesday when the steroids wear off. Good luck everyone.
0 -
HI ajbclan
For thrush you can use equal parts bendryl and maalox that is very soothing> hope you feel better
0 -
Wow- ok thanks!!
Has anyone read or seen this book: https://www.amazon.com/Let-Get-This-Off-Chest-ebook/dp/B00DQSVL4W
Seems to get good reviews overall, I like to laugh so might be funny?
0 -
Ajbclan - that book looks like it would be fun to read
Fireheart - thanks so much for the recommendation. Will check it out. I'm hungry but I don't know if I can fit anymore food lol. Such a lousy feeling.
I had my treatment on a Wed and worked fine on Thursday. Friday I started to feel crappy. May switch to treatment on Thursday, that way I can ruin my whole weekend and work Monday. Will talk to my MO Wed and see what he says.
Night all. Putting this tired body to bed.
0 -
Well, I'm now 50% done! YAY!! Today was a bit harder though, and I really have to thank you on this site for maybe saving my life! I'd read of a couple of you having the allergic reactions to the drugs. The nurse had just started the first drug Taxotere and I started feeling weird. I thought, am I feeling something or not? Then I felt like I was having a heart attack, with a tight band around my chest, and then couldn't breathe, then my head felt like it would explode or erupt with heat, and started coughing madly. I called the nurse immediately who stopped the IV, and ran to get stuff to counteract the reaction. Two other head nurses came in, but I was already feeling better with just stopping the IV. They pushed another bag of steroids and then the MO ordered 10 mg of benadryl. We had to wait 30 minutes before trying again. They pushed it very slowly and I had no reaction and was able to finish both drugs. I don't want anyone to be afraid, I was just so thankful I had read about the symptoms on this thread and could correct it RIGHT AWAY. Otherwise, I might have questioned if it was normal or just my imagination.
Lisbeth, my MO said to avoid NSAIDs because they are much harder on the kidneys and when you are on chemo, you don't want anything to add to the harsh chemicals in the kidneys.
My MO told me that the SEs I have the first go around, are most likely not going to be worse the rest of the time, but I didn't react last time to the taxotere either. He did say the fatigue is cumulative and will most likely get worse. I'll let you know.
I also asked the chemo nose today about the whole immune system deal with chemo. She explained that if you are on a 3 week cycle, the second week after chemo you are at the most vulnerable with catching things. I'm also finding that my blood sugars are high because of the steroids. Nurse had no problems with the IV today, so that's good. I fear getting to the last cycle and them saying I need a picc line or port! I just make sure I'm ready to float away by the time infusion starts!
Hope all are also good. Yes, still worried about Lori. Hope she's just busy but doing OK. I see Michelle has started a Sept thread so I think she's doing OK. Good luck this week if you're reading this Michelle.
Hope all are doing ok tonight. Just sent my DH to drugstore for Miralax. Last time I started it the first night and need had any problems. Fingers crossed!
'Night, Dara
0 -
Dara, sorry you had the reaction too. Are they going to start you w Benedryl next time? My Picc is convenient at the clinic, but a pain in the @$! at home. I'm worried about infection and I'm sensitive to adhesive so it is starting to be irritating. Might ask if they have something for sensitive skin when the clean it this week. Also difficult to shower and just a constant reminder.
Neulasta laid me out. Upper back, neck and sternum pain. Ouch. How long will this last? Took Claritin today. I will take it sooner next time. My nurse said it seems to help about 50% of those who take it.
Sleep well everyone!
0 -
so word of advice girls.... I felt SO good after my first round that by day 4 I convinced myself I was near 100% and went back to "normal life"... Which for me entailed too little sleep, not enough water and not using my hand sanitizer like a crazy woman. Well- here I am on day 10 and I'm officially sick. I have a bladder infection that they are worrying will move to my kidneys, and I'm so run down after this weekend that I could barely move today, it's easy to forget what our bodies are doing when we feel so good post infusion... But our immune systems are sooooo compromised and our bodies are simply to weak to ignore. Please remember to drink water the entire post infusion period.... Stay hydrated and sanitize!!!!
0 -
So sorry Hope. I know it can be easy to convince ourselves that we're not really "sick" with bc because we really don't want to be. I heard that while on chemo and for the weeks in between we should be drinking 100+ oz of water. Take care!
And yikes! I just took my glucose reading and I was at 358! Steroids!!! and my blood work is all good except for some reason I have high calcium in the blood. I don't even take multi vitamins any more and the MO is really puzzled. The only change other than trying to eat really healthy is I've been making and eating my own granola. I buy organic oats, pumpkin seeds, sunflower seeds, shaved coconut, sliced almonds, dried blueberries or cranberries, and cinnamon, mixed with a little brown sugar, maple syrup, and coconut oil. I'm addicted now, but googled and found out most of the ingredients are really high in calcium, so I'm thinking I need to try to not have any and see if it has an effect. I don't drink milk, eat ice-cream etc. This all started with the start of chemo, but the drugs shouldn't cause that SE. Fun times!
0 -
Met my new PA today and loved her. She had no problem answering questions. My PetScan was good, just had some areas of concern on my ovaries but since I am BRCA2 will be getting those removed right after chemo (then my other breast off and reconstruction). We've reached our $8k out-of-pocket max so trying to figure out how to fit it all in this year. It's going to be close. I'm scheduled to start my chemo Thursday. Yay! Did I really just say yay to chemo?
Hope - Oh no, that's too bad about your UTI. That sounds so scary. Thanks for the advise about the water, I'm usually good with water but forget when I'm busy and it's been busy. I hope it clears up fast. I'm guzzling my water as I type.
Kechla - My MO said try Claritin or Zyrtec for the Neulasta pain (along with Aleve) day before Neulasta, day of Neulasta, and day after Neulasta. I know Zyrtec is a stronger antihistamine so worth asking about.
Dara - that's too bad about your reaction, good job on getting on top of it right away. Must have been scary. And thanks for letting me know about the NSAIDs, I've been avoiding them due to ulcers but I will doubly avoid them to protect my kidneys. My MO also told me the fatigue would be cumulative, oh joy.
My husband just plopped down next to me and declared he had the flu. I knew he wasn't feeling well but...OMG go to the other room, get a mask, get me a mask, where's my antibacterial gel... It's one thing to stay out of public places but to be freaked in my own house. I need a hazmat suit.
0 -
DaraB - regarding your high calcium, did they order more blood work? Did they give you IV fluids? I think it takes a while for a high calcium diet to cause high calcium in your blood because your body regulates the level. If not enough calcium in your diet your body releases calcium from your bones into the blood and too much calcium and the kidneys work harder to filter it, well it's more complicated then that but in general... Breast cancer is one of the things listed as causing high calcium. And dehydration can cause transient high blood calcium because your kidney's aren't working as well to filter out excess calcium. I would drink lots of water to help your kidneys and stay on top of your MO to make sure they follow through on finding what's causing your high calcium.
Here's a good article about it on cancer.net
0 -
ajb - That book looks great. Just put it on my Amazon wish list. Can't justify another book on my Kindle right now. I've got a lifetime of reading to do. But it does look like a book my mom would enjoy. May get it for her and then "borrow" it. LOL
Kz - Hope you find the day of the week that works best for you.
Thanks to everyone for the constant reminder to stay hydrated. It can be hard when the work day gets busy to think about it and then even harder at home when I just want to crash. I guzzled a quart too late last night and bolted up wide awake to pee in what I thought was the middle of the night. Made the mistake of looking at the time. 11:35???? My mind started racing and I dreaded the possibility of not getting back to sleep. So thankful I did. *wipes brow*
Dara - Your reaction sounds frightening. Glad you told the nurse right away. Congrats on being 50% through this process.
Kechla - I'm sensitive to adhesive too. The nurses usually bandage my port area after treatment. I told them to put NO BANDAIDS on my records as those are worst for me. I can handle the paper or silk tape much better. But what have I gotten after 2 out of my 3 infusions so far? You guessed it! Last week it was on so fast I didn't have time to complain. Ripped it off as soon as I got home - yeah, that felt great too. Sorry you have anxiety about your Picc line. Maybe the positive is that it makes you be extra careful with it???
Hopefloats - Sending lots of love your way. I will be praying for you.
Lisbeth - You did say "yay" to chemo. Amazing what BC makes us say and think, isn't it?
It's great that you got an awesome PA this time. Will you be able to avoid the cranky, rude one in the future? Sure hope so! I laughed out loud about your hubby. Why do DHs and kids do stuff like that? I made it very clear to my DH that the SECOND he THINKS of sneezing, coughing, or anything like that he is relegated to sleeping in the basement until he's better or my treatment is over...whichever comes first. And he is totally tired of hearing me ask, "did you wash your hands" before he touches anything I might come in contact with. Perhaps you could leave masks conveniently placed around the house so your DH would get the hint. Mine usually requires the direct approach.Wishing all my August chemo sisters a Terrific Tuesday. You are all in my thoughts and prayers daily.
0 -
yup.... I too am now officially worried about WenchLori. She usually posts by now. I pray the second round was not too hard on her.
0 -
Tishabe, what problems did you encounter? Perhaps someone can suggest something that helped. What drugs are you taking?
Again noting that no one likes the circumstances that bring us together, welcome!
0 -
DaraB and others that have had reactions- wow....so scary, but I'm so grateful that you take the time to describe what happened to us.
Hope- again- I hate that this happened to you....but I thank you for sharing.....I think logically in my head I "know" immune system down, etc. But- you do start feeling better, drinking less and feel like you should be "normal". All of the advice here- from personal experience to what you guys are learning from nurses, etc I am taking to heart and seriously. I'm focused back on my fluids today, and realizing I may not go back to work even in the office- don't trust all those germs running through the vents. I want to desperately stay on schedule....so making that my primary goal for now.
Kechla- I was told to take Claritin every am for 7 days starting the day of the Nuelesta. I've taking Aleve and Tylenol as well (NP said don't be in pain) to help.
jandjmom- love you wore the shirt- I was looking around....did anyone see the shirt that said "no these aren't real, the real ones tried to kill me!" Got a kick out of that, not sure if i could wear it. lol. I can't remember who's husband had the shirt or hat on as well...I'm thinking it would be more fun to get friends shirts lol.
fire heart - you always make me laugh, thank you. I have worse scars from sterie strips then the biopsy spot. lame.
whenchlori- we so hope/pray you are lurking, possibly too tired to post (which I have totally felt).....please know we are all thinking of you.
0 -
Thanks Hopefloats.. , I too felt really good after my first chemo, I am so glad for the heads up. I'm going to be more careful. Still waiting for my hair to fall out...not looking forward to it. No wig or scarves yet. Guess I'd better get going on that! God bless you and I hope your infection heals quickly!
0 -
Hello All, I have been following for awhile and decided to join. I started chemo TC on 8/12 and will be going for my second infusion on Friday. This seems to be a great support group and much good advice. I'm 34, married with three children 9,7, and 2 and working intermittently between infusions. Tons of hand sanitizer hoping all stay well with the kids going back to school! I feel like staying hydrated and drinking tons of water is what has helped me most post infusion. Prayers and hugs to all to get through this smoothly and quickly.
0 -
Hi arlenew. I just had my second infusion fri and am doing much better than the first. I also think its because i really forced myself to drink a ton of water before, during and after. I seem to feel the worst 4th day after nuelesta shot.Today is 5th. fay so hopefully turning the corner.
0 -
Had my first chemo session on 24 August - now in the day 7-10 phase. Next chemo on 14 September.
0 -
Ingrid, how are you feeling. I'm heading down the chemo road starting next week. Pretty scared of what is coming!
0 -
Hi ladies..its been a while since my last check in.....had my 2nd AC last Monday...and it did hit me harder the second round ...I am all good at week 2, however I did catch a minor cold during my first infusion..and the cough had never gone away...getting paranoid that it might be in my lungs...!!?? but other than the cough..all good this week..wanting to spend time with the kids as much as possible before school starts next Tuesday....becoz next Monday it's a stat holiday..and Tuesday is the first day of school...(my younger is starting first day of Jk!...reason why I am doing chemo so I won't miss days like these! So my next or 3rd AC will be pushed to a wed...I hope my cough will be gone by then!
Kechla - I hate my PICC line too ...my skin is getting very irritated....and I can't even enjoy my showers....but gotta do it to save my veins....i hope it can hold up until I am done my full treatment!
Thinking of u all...hugz xoxoxo
0 -
Welcome back Scarys......thanks for the feedback on your 2nd, and just re-emphasizing trying to stay healthy!
Karey59- fluids seem to be a running theme, really trying to drink more today.
Welcome Ingrid- I think we are on the same schedule!
Welcome Arlene- I'm just so overwhelmed by the amount of women on our board alone, and to see you're 34 with 3 small kids- I thought I was "young" lol, but it seems to be the norm unfortunately. My mom didn't get her first cancer until 60...that was suppose to play in my favor- ha. I don't know how you're juggling it all!!
So my dog decided she'd like some poison too....mommy's doing it....so caught her eating some plant food.....a call to the poison control (which costs $!), all is ok- but seriously?!
0 -
Thanks ajbclan, I like the quote, "You don't realize how strong you are until strong is the only choice you have" I have learned bc does not discriminate and doesn't care how old you are.Just blessed that I found it myself and went in to get checked. Never saw myself going down this road but am very pro breast self exam for young woman who are too young for mammograms. It could save your life!
Karey59 Hope you feel better soon and turn that corner! My worst days seem to be days 3-6 and I start to feel more like myself by day 7.I also had the neulasta injection. Hoping this next round it goes the same as the first.
0
