Starting Chemo in November 2017
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hey there! I started ac chemo last Thursday and have little to no SE even after neulastin shot. This was a little upset stomach day but I just laid around. Not taking anti nausea meds except fir this am. So since u are ahead of me have u noticed SE worse after 3 days or is it different every cycle? Would love to schedule my life a little lol!
We in this together :
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Magari - Morning! I'm so glad your chemo went as well as it did! Its 1am and I want Pizza! but I'm going to refrain. You guys (gals) are making me hungry.
They said on the news the FLU is really bad this year - MY MO told me not to go out in public without a mask and gloves between day #7 - #14. Even though I'm getting the Neulasta Shot. Maybe its the Cocktail I;m getting, and my Immune System is what it is (BAD) Nite all0 -
Haven't checked in for awhile. I had a left mastectomy on Oct. 13 and I had my first A/C infusion on Nov. 20. I was on the dose dense, with a Neulasta injection the following day. My side effects started the day after the infusion, and I had almost 2 weeks of all sorts of miserable reactions. I developed mucositis, which has been just awful. The "miracle mouthwash" has been helping. After the oncologist took a look inside my mouth he decided to change my regime. I will now have my A/C infusions every 3 weeks, with no Neulasta injections the following days. He assured me that changing from 2 weeks to 3 weeks will have absolutely no impact on the outcome of the therapy.
I was prescribed Promethazine (Phenergan), Ondansetron ODT (Zofran), Prochlorperazine (Compazine), & Dexamethasone...all to help with the nause. Of course I didn't take them all at the same time, but I followed the nurse's suggested routine and got NO relief. The Compazine didn't even begin to make me sleepy - was hoping to be able to sleep off some of the nausea.
I had to go in to the clinic to get an anti-nausea infusion to help calm the discomfort. The only pill that did seem to make any kind of difference was the steroid, Dexamethasone. They gave me only 10 pills, but after taking 8 I was feeling better.
For the last few days I've been feeling pretty good...just tired. I have my #2 A/C on Dec. 11 and I know I will probably have to go through the same side effects again. I bought a package of emesis bags from Amazon so I can take one with me if I have to go out.
And, now today my hair is starting to come out. I sat in the bathroom and cried. I know all of this has to happen, but sometimes it's just so much to deal with.
Thanks to all who here who provide their stories and their continuing support.
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hi everyone, been just reading and it's overwhelming to see so many of us going through chemo through the holidays.
hugs to you neeliecor. losing hair is shocking at first but i promise the sadness and shock tapers off. some have decided to shave their hair off before it started falling.
rljes i had the same advise when i was on EC.
just finished dose 4 of taxol + carboplatin and going for dose 5 this week. had sore muscles and bone pain yesterday from the torso upwards. today is much better. i take it one week at a time.
sending you all strength and hugs and hopefully you get to watch or read something that makes you smile or laughbefore you sleep.
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rljes....I shop at Meijer and Kroger and both carry the "Yes" soup. It's right in with the other canned soups. I've not had it yet. Sorry for that big D attack. Bad enough in the daytime, but middle of the night??? No thank you!! Is Claritin 2, the same as Claritin D? My onco said "not" to take the "D". I didn't ask why not. I agree, it is of utmost importance to stay on top of those symptoms!! So, take the meds.
Mom4Gma3....Hope those aches and pains remain "little"...maybe, a nap during the day will help with the fatigue.
Magari...Sounds like your over the hump with this infusion!! Great news - enjoy the "feel good" days.
I'm still feeling okay since my Taxol infusion last Thursday. A bit tired, but not much else. The little aches go away with Tylenol.
A couple of errands will get me out of the house today -- the post office and CVS -- exciting, huh?Have a good day!!
Hope
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Neeliecor...So sorry for those horrible side effects. I've never had AC, but your side effects are similar to most. I sure can relate to the hair loss. My onco told me I would lose mine on the 12-14 day...and it was exactly that time frame. Yes, unfortunately it is something we all have to accept and make the most of while going through these treatments. Hang in there with the rest of us...!!
mkn...Glad you are feeling better. Hope dose 5 goes easy on you.
Hope
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Mom4gma3 - sounds like you are doing well with side effects. That’s good!
Rljes- I’ll look for that soup next time I go shopping.
Day 4 seems to be the worst day for most of us. Yesterday was a complete loss, stayed on sofa and slept off and on. Got up to try and eat, but no appetite, and ate very little of anything. I hope my mouth heals ok. I’ll have to see the dentist at some point, but not today. Stitches on lip are suppose to come out by Friday - oh!
Since I just got up, I’m actually drinking some coffee. May backfire on me, but I felt I needed some caffeine. I have to feel a little better if I drink coffee. I don’t think I’ll take any anti nausea pills - unless I feel queezy. Not sure how many days you take them, but I feel fine and it’s been over 6 hrs. since my last pill.
Hoping Day 5 is better!
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Is anyone still working? I plan on going back to work on the 12th. I wanted to see how I felt through the first cycle and schedule my job around the bad days, even though it will be unpredictable in the future. I know there are worries about being around sick people, I do dialysis for my patients and most of the time they aren’t sick, but I do have access to PPE when it comes to masks and sanitizer. I just can’t sit here anymore. I’m loosing my mind. I’ve been out since surgery on the 5th of November. It’s going to be rough because I’m on my feet for 10 hours straight, but just wondering if anyone has attempted to keep working and how it went
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mom4gma3,
I had planned to work as much as possible. Started out ok until day 12 cycle one, dr put me off for 3 weeks due to febrile neutropenia including 6 days in hospital, and liver function way off. I'm back at work post cycle 2, and had neulasta after cycle 2. I am so much better, but also my adriamycin dose was reduced 15% 2nd cycle. Tired week one and 2, go home after work and put swollen legs up. Week 3 much less tiring.
My work place has been very supportive. I have chemo Friday, bounce through the w/e on steroids, Monday off due to tiredness from lack of sleep from steroids. Then wednesdays off. That way I only work 2 shifts in a row. I also have more regular breaks, I have morning tea after 2 hours work, and oftern afternoon tea also. My colleagues are great And my bosses are supportive of my working days. I'm only on AC At present. Next year herceptin, radiotherapy and AIs ill re evaluate my shifts. We only have an 18 yr old at home now so that helps, couldn't haVe worked with young kids at home and chemo. Like everything we are all different, this works f
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I actually started in September the chemo treatment but just started the second regiment during the 2nd week of November.
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Im a RN and have found it VERY difficult to work as a charge/floor nurse. I am currently seeking out light duty. Four days after receiving my first Taxol, and HP, I went to work- my unit had 20 patients, 4 days later with a temperature of 103.2, I was diagnosed with pneumonia.
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Morning Everyone!
Whew! I feel Ok today - Day #7 /#1 Chemo.. And Hungry. Always Hungry, and bloated a little. Woke up in the middle of the night with Mouth sores - swished, brushed and put in my retainer I used to wear - That helped. I think it was me grinding my teeth and biting on the inside of my mouth.Hope - I looked, I have Claritin reg - the D is prob for multi symptoms. Your GOing to CVS> Take Me!
Blair = yup, I do believe #4 is the day. I can't sleep anymore - Need to join the "I can't sleep thread"
Neeliecor - ((Hugs)) I;m so sorry you were down with Nausea, what an awful feeling. Maybe they can infuse you with what they gave you at the center next Chemo treatment to ward it off. I;m counting the days down to Hair Day - 7 more days, I keep running my hand thru - looking for any loose strands. I think I'll cut it a bit more today. Shaggy pixie.
mkn86 - Funny you said to "smile or laugh before bed - I was laying in bed, couldn't sleep so I said "SIri : Play "She's A Woman by the Beatles" and Rocked on! DId nothing for my sleep, but made me smile!
Take care
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Oh Neeliecor- I missed your post, but have wondered about you these last two weeks. I know it’s been hard for you and hope your body adjusts to everything in future better. I’m also on same anti nausea pills, but they worked for me except the dang lorazepam that collapsed me down to the floor.
All of us will lose our hair. It will grow back in time, don’t cry. Well if crying helps, then cry it out all you want, but it’s not the end of world. You will still be a beautiful woman, no matter with hair or not. You’ll get use to it in time, and then it will come back. People are understanding to appearance in these situations. I’ll probably cry too - you are not alone on this. Hugs to you and keep the faith. Remember you are killing the cancer - hard way, but aren’t we all
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PS - FYI - You can use Dental Wax strips (buy anywhere) and line your jaw teeth to keep from scraping your teeth on your cheeks instead of wearing a retainer. Works just as well! Cut my hair this morning, before it starts shedding. Just chopped away -
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I know work will be supportive and flexible so that’s a big plus, I am a single person so I have to get back to work to pay bills. I only have about 8 weeks paid time off and I don’t want to use it all up now. Luckily all my kids are grown so no worries there.
Larajv- I was halfway through nursing school when this came about, they basically said sorry you can’t continue and that was it. Being in nursing my whole life it’s hard to not be able to do your job and care for people. It’s what we need in our lives. They should have given you a lighter load when you returned, and made sure they were the safest patients possible.
My mom made me go for a walk today at the park, she has become my personal cheerleader making me get up and move. As long as it’s before noon I do pretty good. But good Lord it’s crazy how weak we have become.
Strength and prayers to everyone...
Tina
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Good for your mom! - Mom4gma3. So glad your co has given you time off.
Rljes- you did a great job on your hair! That’s cute - at least for as long as you have that style! Hang in there! It’s not easy - my turn will be soon
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So though I enjoyed my salad yesterday, I think it was a little more fiber than my body was ready for.... Had a bit of a rough night/morning. 3 doses of Immodium seem to finally be kicking in.
Feeling otherwise okay, just tired since I didn't sleep well. I've done my PT exercises and will head out in a bit to hit the library and market. And possibly a mani/pedi. Will probably take a nap this afternoon. I'm making a lightened chicken pot pie for dinner - something comforting for the cold snap we're having.
rljes - You are rocking that haircut. Seriously, it looks very stylish and suits you!
Re working: I'm on leave through my second round of chemo and will try to go back on at least a part-time basis after that. We shall see. I've filed a claim for SDI and have a lot of sick leave banked, so there's no financial stress for the time being.
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I copy my replay here, may it helps to find out respond from sisters .
Hope all of you will be fine ..
I saw my doctor (oncologist) today, according to his instructions, he told me to start chemo next week. Its hard to hear that but no choice except crying .
He wrote 6 cycles of treatment ( 4.5 months in total ) , one time per 3 weeks as below :
- FEC ( Fluorouracil - Epirubicin - Cyclophosphomide ) - 3 times
- Taxotere - 3 times .
I read the side effects of each one, its hard to read, hard to think about it, and no ideas what the future hold . according to many medical websites, this is the side effects (common and rare, more and less than 30% of patients ) :
Fluorouracil side effects :
- Cardiotoxicit ( the most dangerous side effect, long term side effect ), Myelosuppression, Cerebellar syndrome, Encephalopathy and Anaphylaxis.
Epirubicin :
- Red Urine, interference with the pumping action of the heart (heart problems can occur as late as 7 or 8 years), leukemia cancer.
Cyclophosphomide :
- Bladder irritation and bleeding, blood cancer, myelodysplasia .
Taxotere :
Fluid retention, weight gain, swelling of the ankles or abdominal area, Muscle/bone/joint pain (myalgias -arthralgias), liver problem, Allergic reactions ( dangerous ) .
as you see, taxotere is tough too much, also Fluorouraci and Epirubicin. long side effects in your life. usually i do trust in the experience of the patients more than side effects list.
any one can help please ? I am afraid
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rljes...Great haircut!! You are lovely and will look just as cute without your new "do"...!!!
Hope99...We are all so afraid when we read those side effects. Remember, not everyone will have all those...but, we just don't know until we're going through treatment. I am not familiar with any of your cocktail, except for the Taxotere. With my initial diagnosis, I had Cytoxan and Taxotere as my cocktail. It was not fun, but doable.
I hope those of you who are still working, will be able to continue even though it may be part-time. I'm fortunate in that I'm retired. I could not have worked when I was going through my initial treatment.
I had a burst of energy today (after my achy day yesterday) and I managed to clean the outside of my kitchen cabinets...did a couple loads of laundry and also, ran a couple errands. It feels so good to feel like I accomplished something.
Hang in there everyone...it will get better!!
Hope
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Hope99 - not sure of what multicentric is, but maybe that’s why a higher dose. All these drugs are scary, but it doesn’t mean your body will react with all these side effects. Everyone is different to some degree. Don’t let it scare you so much. Some on here are having very little side effects. A lot of side effects are rare, so don’t get too anxious over it. I was very high anxiety prior to treatment. It’s one of the hardest things about bs.
Gwinnettgrl - you’re lucky not to have any side effects. It could come later, but you’ll know. Hopefully not!
Magari - what is SDI?
Question- anyone having a fever with their treatment? Mine is creeping up at 100.1. Not happy about that. I don’t need another ER visit. It was fine this morning. Hope it’s the norm to go up and down a bit.
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Blair- no fever here, but I check it twice a day, crept up to 99.8 but never any higher. Hopefully it will start coming back down soon. My MO didn’t want me taking anything for fever because she wanted the temp to fight any infection. Was everyone told the same?
What’s everyone’s plans on their “hair”? Are we cutting short before hand or waiting it out and praying to hold out at long as possible? I thought about cutting, but then what if it doesn’t fall out right away and I cut it for nothing.
Hope99- As hard as it is....don’t make yourself crazy. If you file away every piece of information and SE that you are given, you will lose your mind. Absorb each step a little at a time. I took the common SE and prepared for them. Grabbed suggestions from others to have on hand. IE: ginger, lots of water, bag for chemo, lotions, mints, mouthwash. Then take each SE as it comes. I track mine on Chemowave. So far I have been very lucky, day 5- no vomiting, little nausea, horrible mouth tastes,some fatigue and aches and pains. Every combo is different and person is different. I believe in mind over matter, you have to be strong mentally to be strong physically, don’t let the fear overrule that.
Tina
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Mom4gma3... hair plans. The picture is what my hair used to look like.
I was originally scheduled for surgery September 22, and got my hair cut in a pixie September 21 (as it is in my profile picture). Several delays, and I finally had my surgery November 2, and then an encore performance to take out additional breast tissue on November 10 to get clear margins. Chemo begins this Thursday, December 7. I have an appointment to shave my head on December 21. It is supposed to start falling out around that time, and I don't want to be pulling out clumps of hair over Christmas, so I'm being proactive, and removing it. Having it fall out through the holidays would probably stress out my adult daughters, instead, "Santa" is bringing henna - and I'm going to let them decorate my bald noggin.
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Props Meowmmy, I can’t bring myself to do it! I have hats and beanies I’ve made ready to go, but I can’t even bring myself to cut it short!! I love my hair, I have taken all this in stride, but they say it starts falling out is the day I’m going to break a little bit. On the plus side, looking forward to not shaving!!!
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Girls - I needed a cut since September and thought why bother until I knew where I stood. I have my hairdresser aware that she will need to buzz it as soon as it starts falling out. She offered to come to my house to do it - how nice. It’s driving me crazy anyway being so out of shape, plus it needs to be colored. I’m tired of fussing with it. It will be a new slate and a year from now I’ll be sporting a pixie. (That’s about as positive as I can be on this)
Meowmmy65 - You’re beautiful and will be attractive with whatever headgear! It had to be hard to cut your hair. Good luck this Thursday!
Fever came down a bit. 99.8 is a popular fever I suppose - just don’t go up any higher - please! Day 5 has been a worthless day, but doable and better than day 4.
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nonahope
Thanks for replay, I hope to be fine and resist, because I think that my body not strong enough to take these 6 cycles, i am weak, that is what I feel .
Blair2
multicentric means different small tumors in all breast . I have no idea about what dose I will take
Mom4gma3
I will try to read the common SE only, not all, to protect my mind. But at the end, I do not know how I will face all these SE ? how my body react with Chemo . as I said, i am not strong enough, I do not like sport and feel weak if i compare my self with others .
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Hi Hope99 - Don't get to wrapped up in the SE's- It will make you go crazy. EVERYONE is Different, and EVERYONE will react differently. (Easier said than done - I know!) The only one I;m familiar with is Taxotere. I had no SE's during infusion. The Pre-meds (Steriods and Anti-Nausea) get you pretty pumped up for 3 days. I kinda crashed on day 4/5 and today I;m ok. In fact got a lot done. Took 5 walks with My dog today. We All Understand - we really do.
Mom4gma - Good for Moms. My mom called me last night - she is living in assisted Living with early Alzhiemers, and wanted to know how I was. Made me smile.
Magarai - great you have banked time and SDI - I was very fortunate to have LTD. (Long Term Disability) I couldn't help myself and had a Pizza. Hope it doesn't come back to bite me! I'm Hungry! Its a fine line to juggle the BIg D and the BIG C.
My Temp goes from 97.6 to 99.9. I take it a couple times a day. And Its a good thing I cut My hair today - A big Old Chunk came out! And its only Day #7. Oh Well - I got my beanies ready and its turning really cold this week. Possible SNOW! Yeah!
Meow- Your so pretty! You will rock your short hair too!
I'm going to go find a "Can't Sleep - talk to me" thread - I;m getting my days and nights mixed up. Take care!
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Hair: Although I am cold capping in an attempt to save my hair, I also prepared for the worst. Went to my stylist a month or so pre-chemo and got my collarbone length hair cut to a chin length bob and had it layered to work better air-dried, since use of a blow dryer isn't allowed. Also went for a wig consult and found a style/color that is fairly close to my "normal" hair. The very kind woman at the shop has my info on file and will place the order for me only if I call her to say that I need it.
SDI = State Disability Insurance. Something we all pay into in California, which I thought I would never need to use. (It apparently also exists in Hawaii, New Jersey, New York, Rhode Island & Puerto Rico.) When I though I was having surgery only and therefore missing only about a month of work, I did not intend to apply. But my HR manager encouraged me to do so, explaining that it's really your money that you paid into the system. And since I am now going to be out for at least 3 months and possibly longer, I'm glad she did. My husband is also attempting to apply for PFL (Paid Family Leave), which is another state benefit under the same "umbrella" to pay him something for the days off that he has had to take.
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Magari - thanks for SDI explanation. We don’t have that in FL, so I wondered. I’m glad to hear the fever problem isn’t just me. I’m so stiff and my abdomen feels bloated. Some gas, but not very much. I may need to take a stool softener if I don’t go by tomorrow. Only had two bouts of diarrhea Friday and Saturday (once each) - but haven’t eaten anything much to be a concern of regularity yet. I hate talking about this subject, but with chemo it is what it is. Yuck.
Rljes- I didn’t nap at all today, although tired. I hope I sleep well tonight. Tomorrow I have to call my dentist and see what to do about chipped tooth. It’s not noticeable to the front as it was a tiny chip out back corner of fronttooth, but feels very rough. I hope she (dentist) doesn’t say I need a cap. My brother-in-law said if I didn’t have bad luck - I’d have no luck at all! He is so right.
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Thanks Rljes and LizabethM. The information about the neulasta made me feel better. My first chemo session is tomorrow. I’m bringing my best friend and my iPad, and snacks and water. Hopefully they offer ice. I wonder if ice cream would be a good alternative. Now that would be nice! I’m feeling pretty positive about it. I think I’m just relieved to finally be starting treatment. I’ll have 8 chemo sessions 3 weeks apart then after the CMF I’ll have 16 radiation treatments. Picked up my dexamethasone and ondansetron scripts the other day and Claritin and immodian and lots of stuff to drink. The chemo teacher said using my sonicare tooth brush was ok but to be gentle. I picked up plain ole Colgate and alcohol free mouth wash. I’ve only heard from one other person who had CMF so I’m going to be posting about this treatment and how it goes. Good luck to everyone.
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meowmmy...What a gorgeous head of hair!! I can only imagine how difficult it was for you to go to the pixie cut....but, you still look beautiful!! Keep smiling and keep positive. I go this evening to try the wigs that were ordered in my usual blonde color. My hair is thinning rapidly, so hope the colors are to my liking.
Blair...I hope your trip to the dentist is uneventful.
1950-1952....Good luck with chemo today. You are well prepared. Please keep us posted about your treatment.
Only got half-way through cleaning the outside of my kitchen cabinets yesterday, so that's on my agenda today. I haven't done anything "physical" for so long...I'm finding I'm even enjoying this "chore".
Have a wonderful day!
Hope
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