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Who is starting chemo in September 2016?

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  • hahlyn
    hahlyn Member Posts: 128

    Hello

    I too plan to work during Chemo I work a regular 8.hours but am on call for my territory after that. So I could work my full 8 then get called out to respond to an incident and work another 8. It's rough at times, but I have to work. My family needs 2 incomes. We have 2 kids 15 and 13 mortgage etc..I am ER - PR- Her2+. Scared out of my mind.

  • Jaigern
    Jaigern Member Posts: 8

    Thanks for the tip LisbethS! I am new to this and not technology inclined. I will figure out the settings. I am 42 year old mom of a 10 year old, a 12 year old and 2 two border collies. I meet my medical oncologist and my OB oncologist on Friday. I know they want to take my ovaries for sure but I will get the details on Friday. I have rightIDC 2.5 cm stage IIb with necrosis, grade III, LVI, 1/7 lymph nodes. I had pre-cancer on the left. I had a double mastectomy on 8/10. I meet with a GI oncologist in November for pancreatic screening since BRCA I impacts pancreatic cancer.

    Hi Nayda985! Thanks for the info. My job is very stressful and mentally exhausting. I have had several stress induced illnesses (including shingles) over the past year, if that explains the level of stress I have been under. I just don't know if I can keep up the same level of stress or not on chemo. I am thinking I may either not work or find another job

    Happy to have you all to talk to and bounce ideas off of. I have a fantastic support system but it's good to talk to people that are experiencing it. Thank you so much!

  • seq24
    seq24 Member Posts: 451

    Lisbeth-You just answered a question that I was about to ask about the wig halo. I had that thought in the middle of then night that it might be more comfortable than a full wig when just out running errands or at home. Do you know if the American Cancer Society has those? I am returning the wig I got from them because it doesn't fit and maybe they will just do an exchange.

  • seq24
    seq24 Member Posts: 451

    Jaigern-Just wanted to share what my onco told me when I asked about working full time during chemo. One of the first questions she asked me was what a typical day was like for me. I told her I worked 2 jobs, one in an elementary school and one my home business totaling at least 10 hours a day, sometimes more. So basically full time between the 2. I spent a lot of time running back and forth between schools. She said that she would not allow me to work that much because it was going to be just too much during chemo. She advised that I leave the job at school because being around 550 little kids with an already compromised immune system from the chemo was not a good thing. It was a very tough decision because I really wanted to keep the school job but the family and I decided it would be best if I would just stick with my home business, which also involves children but only 6 vs. 550. So, I resigned and am only working 3.5 hours a day at home. Financially this isn't a good thing but so far after almost 2 months we are doing ok. I have to start chemo on Friday and am very nervous that the side effects will be so bad I won't even be able to do my 3.5 hours a day. I have heard of many people who have worked full time throughout treatment though. I think a lot of it is based on age and general health to start with. In my case, I'm 54 and in great health otherwise, so I hope I am just overthinking this.

  • Leydi
    Leydi Member Posts: 53

    Day 5 and 6 - After first chemotherapy with AC

    I turned the corner on the evening of Day 4. My nausea (which was mild) and dry mouth relented and my energy came back. Day 5 and 6 were good with only mild headache and muscle aches upon waking but not bothering me throughout the day. I stopped taking Zofran on the evening of Day 4. I've been sleeping well every night. Very pleased with the lesser dose of steroids I arranged with the MO (30% less than his typical dose by IV prior to chemo drugs and no steroids as part of my home meds). If you are finding steroids bothersome, try talking to your MO whether your dosage and duration can be safely lowered.

    Wanted to add that I felt well enough on Sunday that my husband and I had our heads buzzed together at a chain haircut shop. They were very kind about the whole process and then didn't charge for my cut! My husband then just gave the same amount as a tip back to them. I carried along a do-rag that I bought at the local biker shop but liked the buzz cut well enough that I haven't even worn it yet. We've been out shopping and eating. I can't keep my hands off my head though. It feels so neat that I keep touching and rubbing my head.

  • Leydi
    Leydi Member Posts: 53

    My plan is to continue working full-time through chemotherapy. I asked my MO on our first consult and he both expects and wants me to continue. His office filled out my FMLA paperwork to allow intermittent leave as needed from my job with an expectation of needing two days off per treatment (one for infusion and one "down" day). For the first cycle, I received chemo on a Wednesday, worked Thursday, then took Friday off. I only felt unwell on Friday and Saturday. I could easily have returned to work today (Monday) but it was a holiday so I had a nice extra day at home.

    I pretty much MUST continue working. I provide the only income and benefits for my family. I'm fortunate to have a desk job. My office was moved just before surgery from a busy building to an almost empty building. My supervisor and co-workers are all located several hundred miles away. So, I don't have to interact in person. It is all by phone and email. Should be pretty safe from an immune system perspective!

    My supervisor has been pretty understanding but he and my co-workers just about freaked when I took 3 weeks off for surgery. It will be pretty stressful over the next couple of months with the end of the fiscal year, beginning of the new year, and all the contract renewal and document deliverables that are required. I'm hoping my energy holds up well enough over the next few treatments and things will slow down at work by the time the fatigue really builds up.

    Good luck to all those who need or want to continue working through treatment.


  • seq24
    seq24 Member Posts: 451

    Leydi, which chemo are you getting? When did you start? You are having good results it sounds like.

    I had every intention of working both of my jobs through this but since they are both part time with no benefits I had no FMLA consideration. We decided it would be best to just keep my home business going and I just hope I can do it, even 3.5 hrs a day. I have had 2 weeks now with just one job. I work late in the afternoon so I have all day to go to appointments, get housework done, cook (hubby is liking that part) and take a nap if I want. I'm getting spoiled and I just hope once treatment starts on Friday I can continue the new routine I have made for myself.

  • Jaigern
    Jaigern Member Posts: 8

    Thank you seq24! That is great information! It's good to know that I am not the only one considering cutting back with work. Thank you so much!

  • Leydi
    Leydi Member Posts: 53

    seq24 - I received my first AC treatment on Aug 31. I'll have three more AC, every two weeks, followed by four bi-weekly taxol treatments. You sound VERY busy even with the one part-time job. You may consider if you must continue all the household chores/duties. I've turned most of those over to my husband and two teens. I'm still doing some cooking and such but decided they can either take over the heavy-duty chores or we will just live in squalor for the next several months. ha! Chose your priorities - we each have only so much energy. Do the most important to you first and when you are tired, stop.

  • seq24
    seq24 Member Posts: 451

    Leydi, I too will be having AC bi weekly, starting Friday. After that I have to have 12 weekly taxol infusions. I am holding tight to your words that you are not experiencing terrible SE. I am a little older than you, but in great health. I am a very busy person. I have a lot of other responsibility besides my job and family. I have always worked through being sick, including pneumonia (that was bad enough I should have been in the hospital), so I consider myself to be pretty tough. But I have had the fear of God put in me with this chemo though and am very afraid I am going to find out I am not as strong as I thought or want, or need to be. I just have to be able to keep up with things, regardless. Infusions will be on Friday so I will basically have the weekend to recover and back to work on Monday. I haven't even looked into how the Taxol may affect me, because I am too worried about getting through the AC. You have no idea how much time I have spent crying over this.

  • juststace
    juststace Member Posts: 14

    if I can share my experience – I am on day four after chemo and there is no way I could be working – I can barely get off the floor I am so tired. I don't have a lot of side effects other than extreme exhaustion. I'm a busy mom I work full-time – I totally thought I could do this – I've always worked through sickness before but there is no way… I just want to be realistic for those of you who are asking about work. I know we will all have different side effects but a heads up on the incredible amount of exhaustion that comes with chemo. my whole body is sooooo sore. Day one and two were awesome I felt like I had so much energy – and then Day 3 started and everything changed. I will keep you posted as I'm a little bit ahead of you and let you know if it goes away.

  • beebs2704
    beebs2704 Member Posts: 88

    Question about Neupogen.... When , for how long is it administered? I recall the nurse saying something about 7 days daily, starting 24 hours after infusion but it's a bit cloudy in my mind. Can someone help me out?

    on the subject of working, my oncologist said if I could work from home or had flexibility in my hours that I should be able to contInue working. But she recommended I wait until the first round to see what it would be like before committing. My work is neither of these so I decided to take a leave. Unfortunately because I'm self employed, this will be a strain financially.

  • juststace
    juststace Member Posts: 14

    i'm taking neupogen – I just did my second infusion – for me it is seven days starting on day 3


    I haven't had bone pain with it yet.

  • seq24
    seq24 Member Posts: 451

    Leydi--you are braver than me with your haircut!! I'm not even sure what I am going to do here in a couple of weeks. Very upsetting thought to me.

    I have to ask, what's your secret to talking your MO into lowering the amount of steroids? I already tried that route with mine and was told absolutely no. I have 2 steroid tablets I have to take after an infusion too. I had to take steroids once before for something else and they did not affect me well. When I mentioned this to MO she said these were a different type and would leave my system faster. I'm not convinced. I'm also working on the no Benadryl issue too. I really don't want that either. I need to be able to think clearly and drive because of my job and that stuff knocks me out! I'm also wondering how are you supposed to suck on ice chips, drink, etc if you are asleep in the chair during the whole infusion because of the Benadryl. Thoughts?

  • Jiffrig
    Jiffrig Member Posts: 158

    You won't be asleep in the chair as keyed up as you are! LOL! Really, though, don't play doctor with the protocol. Especially if you are worried about side effects, these meds are given for a reason. I asked to cut back on steroids and my MO said its just too dangerous and it really helps make the first days symptom free. They do leave your system fast, by day 3 you will be wishing you were still on them for the energy

  • seq24
    seq24 Member Posts: 451

    Jiffrig--LOL. You got that right! You know me well! Keyed up isn't even the word for it! I was talking to a friend who has had a terrible time with the steroids because she couldn't sleep for days afterwards. So they cut them back now she has nausea something awful. I have a whole box full of stuff they said to get when I did the chemo ed. class. Everything from OTC meds, to protein snacks, acupressure bands, ginger candy, and the list goes on. My husband was along on the shopping trip. If the list said you could use this, or this, or this, he would insist on getting all 3. I am well prepared and hoping and praying I don't need any of it. Thank you for always being so helpful and supportive of someone like me who is scared to death of what is just around the corner.

  • LisbethS
    LisbethS Member Posts: 88

    The Benadryl and steroids keep you from having dangerous reactions to the chemo drugs. In my August group I think there were 3 or 4 woman that had scary reactions to their chemo drugs.

    I didn't fall asleep during my first infusion, I think the Benadryl and dexamethasone counteracted each other. I didn't really feel anything from any of the infusions. And my day 1 and 2 were great, it was the night of day 3 that the bone pain started. Also started getting a fever. They said call the doctor on call if it gets above 100.5. Mine was 101.1 so the doc on call sent me to the ER. Wish I had never gone. What a miserable waste of time. Just more expensive tests and made me go on an antibiotic because they couldn't rule out pneumonia which i know I don't have. Just more chemical drugs taxing my poor kidneys and liver. Being around all those sick people was too stressful.

    Seq24, IDK if the American Cancer Society carries halo wigs. They are considerably cheaper than a regular wig though. My Halo wig was $79 whereas the wigs I was looking at were $275-$400.

    Jaigerm, I have a 10 year old and 13 year old and one standard poodle. I'd be interested to know what type of pancreatic cancer screening they are doing for you. Because I am BRCA2+ and have an increased risk of pancreatic cancer too. My grandfather died of pancreatic cancer. They did a Pet Scan on me but not sure how well that sees the pancreas. I didn't get my BRCA results back until the night before my scheduled UMX so it was too late to extend the surgery slot and it was literally the last surgery spot my surgeon had before going out of the country. By that point I just wanted the tumors out before they spread. So now once chemo is over I will be getting my other mastectomy, reconstruction, and a Salpingo-Oopherectomy. Considering getting it all done at once if I can coordinate it. We've met our $8k out-of-pocket max so it will save us thousands if we can squeeze it in this year.

    I'm day 6 from first infusion and my head has been itching like crazy. Is that how it begins or am I getting lice LOL!

    lots of hugs!

  • Leydi
    Leydi Member Posts: 53

    seq24 - While I agree that no one should monkey with their treatment regimen on their own, I think it is perfectly reasonable for folks to discuss their concerns and preferences with their MO. If your MO said absolutely not to reducing steroids for you, it is based on his/her experiences with previous patients. You may already have a lower dose than my MO's standard and so lowering it may not be safe. My MO is very patient-oriented and is willing to listen to my concerns. I actually asked if the steroids were a critical component and he said yes, I had to have them. He did agree to reduce the dose for the first treatment and see how I did. I have no doubt he would have insisted on the full dosage if I had any kind of averse reaction the first time. Fortunately, I did well so I'm going to ask to continue at the lower dosage. He did not think there was a need for home steroids. Some doctors think you need to step-down the steroids over a few days but studies have shown that you don't need to do that after a brief IV infusion.

    I didn't get Benedryl in my infusion so I can't answer to that. I did include a post earlier with the types of pre-meds I received by IV. I did get a couple anti-nausea drugs along with the steroid.

    I don't think of myself as brave for the haircut. I really thought it would be less traumatic to have control over the hair disappearing than having it come out in handfuls on its own. I've never worn makeup or dyed my hair and I started going grey in my 20's. Since my BMX, I've been going around completely flat without trying to disguise my empty chest. My attitude when I venture in public is "This is me. This is how I am. If you have a problem with it, you can look away." ha!

    Oh, and at risk of sharing TMI and embarrassing myself, I've decided to share a side effect I haven't seen discussed so ya'll can be prepared. I've read that the chemo drugs can irritate your bladder. What this meant in practice was that I dribbled urine for a few days. I'm only 47 and have not had this issue prior to chemo! I never flooded my pants, thankfully, so a panty liner was sufficient to control the issue, but I needed to change that liner at every bathroom visit.

    The fun never ends!

  • tanyam
    tanyam Member Posts: 4

    hi MFalabella I am taking tc x 4. My start date changed to Sept 9th. So this Friday.

  • Jaigern
    Jaigern Member Posts: 8

    Thank you juststace! That is exactly what I am worried about. I tend to work until I require hospitalization which has happened a couple of times in the past few years. I want to think about my health now. I have never really done it before and now I just want to make sure I take care of myself. My immune system has been pretty taxed most of my life and I would like to stay out of the hospital as much as possible through all of this but work if it is doable. My health needs to come first now and not my job. My boss is not very understanding about things. This feedback helps!

    As for the pancreatic screenings, I will let you know when I see them in November. I am not sure what it entails yet. My grandmother, great grandmother and aunt all died from pancreatic cancer.

    Thank you so much for the info!

  • lmencken
    lmencken Member Posts: 77

    seq..wait..you had a class in chemo!!?? Don't think I have that..maybe on my first day??

    They have to tell you all SE...try not to think about them..my Surgeon said I won't feel great but not ridiculously horrible..hope she is right!!!

    Loriann..sorry to hear you are back...but you sound like you are staying positive and will kick butt!!!

  • lmencken
    lmencken Member Posts: 77

    Leydi..thank you thank you thank you..helping me to arm myself for the SEs!!!

    Thanks also for everyone'severyone's work info..at my job 3 coworkers had breast cancer..2 worked right through so I think my boss expects me to also...I've heard SEs are ndividual so crossing my fingers!


  • Sparkles1966
    Sparkles1966 Member Posts: 1

    Hello, I am new here and starting chemo (FEC-T) on the 16th September. I look forward to catching up on all your posts, but am in a different time zone! Just wanted to pop in and see how everyone is doing. I am planning to work throughout treatment with days off when I need them, it just helps my mind focus on something absorbing, but won't be doing my usual work because that involves being around children. My experience so far is that everyone nods but doesn't expect me to actually be able to do it... we shall see!

  • lmencken
    lmencken Member Posts: 77

    I have a stupid question..especially for those who started CT chemo a bit ago..did anyone have a drink? I heard it's an American thing and that in Europe they imbibe freely during treatment...I'm not a regular drinker but we have a Halloween party..then there are the holidays ...just wondering.

  • seq24
    seq24 Member Posts: 451

    Imencken--Yes, it was a chemo education class. Actually it was a one on one meeting with one of the nurse practitioners at the cancer center. She told me about the process, gave me all of my prescriptions, took me to the infusion center (scary), answered questions, told me about side effects and how to deal with them. Also I got a shopping list for all of the over the counter meds I need to get as well as suggestions for high protein snacks which I was told was a very important part of the healing process and needed to maintain energy. I have heard that some places do this on the day of the first infusion though. I'm glad to have the information, but they tell you all of the possible things that can go wrong and it was enough to scare me to death. The hardest part was when I had to sign the consent form. I felt like I was handing my life over to them. I just sat there and stared at the paper and she finally said "are you going to sign it or not". I was shaking so much it didn't even look like my signature. They brought in the person who handles the insurance and financial end of it, then two of the chemo nurses came in and talked to me for a few minutes. It was at least a two hour appointment. From there I had to go have my echogram.

  • moderators
    moderators Posts: 7,665

    Dear HelenSparkles, Welcome to the BCO community. We are so glad that you reached out to our members. We hope that you will stay connected here and keep us posted on your chemo. Sending you welcome hugs and warm thoughts as the 16th approaches. The Mods

  • bagsharon
    bagsharon Member Posts: 142

    lmencken: My nurse told me that though she couldn't recommend it, chemo would help clear your liver of any indulgence. I didn't have a chemo class, just a Q and A with a nurse after meeting my MO. It may have been because I'm anxious to get my treatments done before the end of the year so I don't have to pay a second deductible.

    I have a question for everyone else. I start chemo tomorrow and was told to start taking dexamethasone today. It was also recommended that I take the second dose in the afternoon instead of the evening because it could cause me to have restless sleep. Did anybody else have this advice? Did you notice any problems with sleep (other than worrying about chemo?)

  • LisbethS
    LisbethS Member Posts: 88

    Bagsharon, yes the dexamethasone caused me extreme insomnia all three days I was on it. I'm already an insomniac though so it doesn't take much for me.

    HelenSparkles, Welcome to the club nobody wants to belong to. Sorry you have to be here but it is a great way to ask questions and get support from those going through chemo at the same time.

    Imenkcen, No question is stupid. That's what's great about this forum. Ask away. They didn't tell me one way or the other about drinking alcohol, but I didn't ask either. They also didn't tell me about what to eat or what to avoid either. I didn't even know I was supposed to eat high protein foods until I just read it on here. I assumed, based on what I've read, that drinking lots of water is very important, but was never told specifically to drink water or how much to drink. I know chemo is hard on our kidneys and liver so I am trying to do everything I know to baby them through this process, so not taking Tylenol (liver) and reducing NSAIDS (ibuprofen, Motrin, Aleve..) as much as possible (hard on kidneys), drinking lots of water... So drinking alcohol is out of the question for me, plus it doesn't sound good right now either so that makes it an easy decision. I would definitely talk to your MO first. Might be fine in moderation but I wouldn't without asking first.

    seq24, I was scared too before my first infusion. Took everything in me not to run out of that room and never go back. They practically had to peel me off the ceiling, but then it turned out to not be that bad at all. I think it will be less scary the next time.

    They had my chemo class the week before my infusions were originally supposed to start. Gives you time to run out and buy all the OTCs and other things they recommend. It was just a one on one meeting with the PA to go over everything, ask questions, look at chemo room...

    Did anyone else get advise on what to eat and what to avoid on chemo?

    Take care everyone!



  • seq24
    seq24 Member Posts: 451

    Lisbeth--Yes that is me as well. I woke up in the middle of the night last night crying my eyes out in fear of this. Not sure if I had a dream or what. I was picturing what my day is going to be like on Friday and it was not pretty. I can see myself jumping out of a moving car or something to avoid having to go. I am more scared about this than anything else so far in this process. I got my wig today and almost got sick. I had to put it away so I wouldn't look at it. I just keep thinking that I'll only have my hair for about 2 more weeks. That is horrifying to me. I always thought I was a strong person, but this has affected me in a way I never imagined. My family is about to send me off somewhere so they don't have to see all the emotions I have running through me. I truly appreciate everyone's support on this board. Please keep posting about your experiences. I wish you all the best in your treatments.

  • Jaigern
    Jaigern Member Posts: 8

    Welcome HelenSparkles! I am new here too. I meet my medical oncologist on Friday. I am not sure what chemo or when yet but I know they want to start treatment fast. So happy to have you all to take to! Thanks everyone