August 2015 Chemo Group
Comments
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@joceyr, I think we all have those moments (mine was yesterday morning) but we don't always share them because we want to show our strong, cheerful, brave, inspirational sides, and all those other Hallmark Movie qualities that women with BC are meant to have.
I'm so proud of all of you for sharing some of your journey here, good or bad, positive or negative, hopeful or discouraged. This is the bright spot in an otherwise dismal landscape some days.
This morning I am feeling pretty normal. Not taking that for granted one bit after yesterday. Little bits of that monster headache seem to still be lingering behind one eye. I wonder if next week I could just take some very strong medicine on Saturday night that would make me sleep all the way through Sunday, so I won't miss eating or being able to go to the bathroom like a normal person? LOL
@BlueFrog, that's the best story. Good for 13-year-old you for sticking with your blue-frog vision, and having the fortitude to follow through with an encyclopedia picture and everything! I hope she learned something from you. And I'm glad you learned what you learned, because it seems like it's serving you well right now.
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I'm at day 7, so my nadir is starting. The constipation is killing me. Smooth move tea helped on day three but it didn't work last night. Awful cramps and no poop. What's working for you all? My guts and joints have been very painful, and I have some mouth sores. @Joyceyr I do think about stopping. I'm not sure I can do this 5 more times. I'll call in today and see what help I can get from my onco nurse
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@RavenSally, so sorry to hear you're going through the yuck! It's cyclical so you'll be better in a day or two. This seems something like labor - I've only got the one, but I've heard other women with two or three kids say that every time they manage to forget what labor was like and follow through with another birth. When I left for my infusion on Friday I was feeling fine and thinking about the weekend, not even anticipating another bad day. I hope it'll be like that for you, too. Something like a weekly mini-amnesia seems in order for us, just to push us along. As far as the constipation goes, I was right there with you this week, although last week I had the opposite problem. I am not sure, but I think what may have helped me get past it yesterday was the probiotics. I took another one last night, hoping that everything will be pretty normal today. Also on Saturday I had a smoothie with lots of fruit and a scoop of fiber in it, and that might have helped too.
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Great article on peripheral neuropathy prevention/treatment from Dana Farber - I don't know if I got this link here or if I found it, so I'm re-posting it just in case it's helpful for someone else.
http://www.dana-farber.org/Health-Library/Alleviat...
In a nutshell:
100mg B6, 300mg alpha-lipoid acid, 15g 2x per day of L-glutamine, but most importantly, you must consult a nutritionist AND your MO before embarking on any new supplementation plan. (I gather some things can interfere with the effectiveness of chemo and/or radiation.)
Personally I'm encouraged by the ALA idea because it actually says it can be used to treat PN, not just prevent it. I already had some PN in one foot before I started chemo, so anything I can do to prevent or alleviate it, I will try, as long as my doctor and nutritionist okay it.
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How many of you are working while doing chemo? How is that going? On leave from work but thinking of what my plan will be for return... Thankfully there is no rush for me to be back. I can go on long term leave. Just curious what others are doing.
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Hi all, Thanks for the well wishes since I posted last from my hospital bed. I'm home and feeling good today. I wound up hospitalized last week with febrile neutropenia. I waited about 7 hours after the fever started to report to the ER. NEVER do this! Get to the ER immediately if your regimen causes low white blood cell counts and your temperature rises to whatever your medical practitioners advise. It truly is a medical emergency. My counts were near 0 and I had an unknown infection and the outcome would have been dismal had I not been treated promptly with IV antibiotics and other stuff. I thought I was okay to wait a few hours because I've really have had no side-effects from the chemo, other than some hair thinning, plus I get the neulasta shot. Well I was wrong. Please don't make the mistake I did. Get immediate emergency help if you develop a fever.
You're all very brave ladies fighting a tough battle. We will get through it, and we're lucky to have a board like this that we can search, ask questions, or just rant a bit when things get a little off. There was no such thing 25 years ago when I went through this sh*t the first time.
Notice that above I didn't include myself in the brave group. That's because I almost said no more after this fright. Alas after speaking to the onco over the phone this morning, and receiving reassurances, I'll trudge on. And I will do what I'm told. The S in Sio literally stands for "scared". Well, it's time for me to toughen up. Nonetheless, I HATE this.
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^^
I only check if I feel bad. Now I've been told to check at least twice daily.
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I am on day 13 and feel good! Nadir period was HORRENDOUS but I am here today to tell you that even though I wasn't sure I would ever pick my head up off that pillow, I did get better and think I can actually do this again...........maybe! Kudos to you who are actually working or raising small children during this. I could not do that. Listen to your body and don't overdo it. One day at a time, ladies.
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may I ask what is the Nadir period also I asked about what the cleopatra period is.
Thanks
Rosieo
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@rosieo Nadir is the lowest point of your blood cells and platelets. It occurs from about day 7 through day 10 after chemo, you are at the highest risk of infection. Do not eat raw fruits and veggies, wash, wash, wash your hands, limit contact with the public. I use hand sanitizer and Clorox wiping things. Take your temperature
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Nadir period = time when you feel rock bottom but after it you're going to start feeling a bit better. That right?
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@SIO you are part of the brave group! Don't sell yourself short. It's going to be a bumpy, mysterious road, but you are going to get through it. We all don't know how this journey is going to impact us but you are helping us with your experience. I'm pretty sure all of us here are scared of some of all of the stuff we are dealing with. Thanks for sharing and telling us to check in with the ER if we experience fever etc. You are going to help someone, that's for sure.
I put on a pretty brave face, but last night, I broke down crying as I saw a bunch of my short hairs on my white sheets. I realized that I am not in control of this hair loss thing. Even though I made the decision to buzz my hair last week, the hair falling out is not something I can control. It's ok to be scared. I think I need to tell myself this more that I currently do.
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Michelle: I resigned from my job. I had started only two weeks before my spinal fractures were diagnosed. The job (head of fundraising and development) is incredibly demanding with lots of nights and weekends and incredibly public. I just knew I didn't have the stamina for it. Nor did I want to ask my million dollar donors to hold my wig back while I throw up.
Unfortunately, I had been in a similar role for four years before that. I would have been eligible for a paid leave and all kinds of good stuff. Just bad timing. I hope to go back in six months or so. I know I will take better care of myself if I slow down the pace of our life. I'm not 100% sure I've made the right choice, but it's the choice for now. I should also say that I'm stage 4, with two young kids, so even if it's only a short break, I'm committed to creating lots of memories with them during this time. But it's such a personal decision, so I support all of us in doing what makes best sense.
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michelle888: I have continued working full time since beginning chemo in May. Fortunately I have a lot of paid sick leave saved up so I can take off as much as necessary. I am very tired for a few days afterwards. I made them schedule all my sessions for Fridays so I have the weekend to rest up. Although I have had a lot of the usual side effects, they have all been manageable. There has been no nausea or vomiting, hurrah! Of course it will depend on how you feel, the demands of your job, the employer's personnel rules, and laws or regulations where you live. Best of luck to you!0 -
Anyone experienced itchiness?
These couple days I've itching all over (mainly my arms, neck, back) that make me want to scratch scratch scratch... My skull was itching for 2 days last week, but then stopped.
I don't know if it's the heat wave & humidity (sweat) or what (did I touch something I shouldn't touch?). Today is day 15 of round 2, so I am not taking any meds. Very annoying....
scratch.... scratch... scratch...
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RavenSally, Metamucil fiber wafers with a big glass of water worked well for me. Best of luck!
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Joceyr-- Today is day 7 and i had the worse night of my life last night. I had bone pain in every bone in my body. It would come and throb and my head would throb with it. All I could say was how in the hell am I going to do this 5 more times. It hurt so bad i thought i was going to puke. I took tylenol and then a couple hours later took advil and I was able to go to sleep and now it has passed and I feel ok today. Boy that came out of no where and it was baaaaaad. I hope that means I turn the corner because pain like that messes with your mind. Time seems to be standing still, I need to come up with some sore of plans or milestones to get this moving along. I consider myself to be a good patient lol and a put your head down and do it "tough" kinda patient and this broke me last night. So it happens to everyone and I would love to quit and say screw it, but I know I can't. Sucky position just wanted to let you know I was suffering in limb, spine, and bone pain last night too... I started monday the 24th so I call this day 7, and day 6 was by far the worse yet.
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michelle888: My plan is to continue working during chemo. I do have the option to work from home on days I am not feeling well. I am on Day 12 of my first round of AC and so far I have been feeling OK. I left work a bit early one day last week because I was feeling tired.
I want to share a recommendation I got from a friend: GermBloc lotion hand sanitizer. It's not alcohol-based, so it doesn't dry your skin out like regular sanitizers can. I found it at Winco for about $3 a bottle and I like it so much better.
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I'm using the magic mouthwash. It made me gag and pee simultaneously, but it works
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Gooseberry, did you have Neulasta? Either way--I've read countless places that Clairitin seems to help with bone pain, regardless of what's causing the pain. Even if you're taking it, you might ask your MO if you can take two (one every 12 hours), or even for something stronger if you need it.
Re: constipation. . . . Magnesium. Good old magnesium in capsules (not tablets) has always been reliable for me, especially during chemo. The balance is so, so, so, fine between constipation and diarrhea, at least for me during the first cycle. I've taken Senecot and Imodium--as directed, mind you--in the same day.
Carolyn, you just made me spit my water.
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I did get Neulastra kateb79 and I only took claritin the day of and the day after like instructed. This happened on day 6 so I will be taking it a lot longer next time. My cheap dh also got the equate claratin and I don't know if it matters but I got the 24 hour self dissolving actual claritin ones for the next round. Also will be on the B's and glutamine and will have some kind of meds for pain because i will not go through that again. I will know if/when its going to happen next time. I had a little bone pain and just kinda shook it off and then at 8pm it was unbearable. Like my husband wanted to take me to the hospital unbearable. I took the tylenol but it took awhile to kick in and then i took advil too and fell asleep. Next time I will for sure know and take something immediately. Today I feel pretty good and I been pretty much ok, since the infusion, a little off a little out of it but nothing drastic (the numb feet seem to come and go) but I was still feeling a bit sorry for myself so yesterday sure taught me if I am having an ok day, to enjoy it and savor it and don't be such a baby lol... Because that was a real bad day and the other 5 were NOTHING compared to that. So it was a good lesson on a number of things.
As for working, I think I could be present, but I am not sure what i would get accomplished... today I can eat anything, I am not in a haze, so it could be alright but those first 3 or 4 I would of prob just been drooling at my desk or asleep in the corner. lol
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I don't know if this might help, but I was told to start taking Claritin the day before my infusion and to take it up to 7 days afterwards. I was fortunate not to have a lot of bone pain - more like achy hips and oddly enough my elbows were kind of tender too.
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I had joint and bone pain for a couple of days, but I didn't get my Neulastra yet. I'm supposed to have it next round. I also have two apparent zits on my nose. I'm 53. This is not funny
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Michelle888: I work out of my house which is both good and bad. Good bc I have flexibility but bad bc my career is just me and I can't let clients down. So trying to get lots done when I'm feeling good. we'll see how the strategy works out
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If a lot of you are feeling the effects on day 6/7, I might be in trouble. I had most of my problems the day of and up until yesterday. Maybe just a bit today, but much better. Never did get rid of the headache again. Went to the chiropractor and that was part of the problem. I may go again on Thursday just to make sure that I am still in the right alignment. I did have a good talk with my nurse navigator about my anti-nausea meds and when to take them and not take them. She also approved the probiotics, but not antioxidants because the antioxidants can feed cancer cells and good cells.
As far as working, I am on short term disability at least until Oct. 1. I work in a manufacturing plant and have a physical job. They don't always have "light duty" and work is slow right now since we just finished Christmas. Even though the money is tight, I am thankful that I am taking the time off since I am not sure if I could even do my job with the way that I have been feeling.
I am glad that everyone is posting the good, bad, and the ugliest of this crap, it reminds me that I am not alone in this and that we don't have to be strong 24/7. If anyone needs to vent please do, it could help at least one person and one or few of us may have ideas to help too.
I will be honest, now that I know what the nadir period is, I am a little concerned. I did get my neulasta shot the day after tx, but we are have our annual multi-family garage sale and I am usually the cashier. I will be armed with sanitizer, but wonder if it is worth the risk. Will be calling about that tomorrow I guess.
Keep fighting the fight ladies, we will kick cancer's butt. Have a great evening.
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Hi everyone! I'm 29, single, living in Central New Jersey and I was diagnosed in May.
From the start I was told that, because of my Triple Negative status, chemo would most definitely be in my treatment plan. In the beginning this was the last thing I wanted to hear, as I had already gone through chemo when I was 14 for Hodgkin's disease.
I will have 4 rounds of Adriamycin and Cytoxan every 2 weeks, followed up with 12 weekly rounds of Taxol. My oncologist also plans on incorporating Carboplatin if I manage the A/C well.
My first treatment was on 8/21 and though it was not pleasant, it was bearable. The transfusion finished around 2:30 pm and I was feeling it by 5 pm. I had 20 minute cycles of queasiness, aches and fatigue. The description sounds worse than it felt. Again, not pleasant, but bearable. I was very sensitive to smells; ginger ale and crackers were my best friends that evening.
The steroids from the premeds kept me chatty and a little goofy when I wasn't in a bout of fatigue. The side effects lessened as the night went on and by 9:30-10 pm I wasn't getting the waves of side effects, just felt drained and ready for sleep. The steroids also kept me awake for a while and one of the nurses suggested good ol' Benadryl if I couldn't get to sleep.
I drank lots of fluids the day of and throughout the weekend, and took my compazine as prescribed. Saturday through Monday it was absolutely necessary for me to take a nap around noon. I didn't throw up but I did have an upset stomach. I think I may get some immodium going forward.
No mouth sores to report, but I do find that my mouth tends to get scratched easily with foods like pretzels or chips (salty snacks were my weakness before, but I've noticed that I've been very sensitive to salt, so I'll probably be avoiding the scratchy stuff). I'm using biotene which seems to clear up any little scrapes.
I received my neulasta shot two days after on Sunday and I thought I had managed to skate by without any bone pain, but I think I might have some in my lower back and my neck as of yesterday (7 days from the shot).
When I went in for counts on Friday the doctor (not my onc but another in the practice) said they were a little low for having had the neulasta.
I'm not banking that the rest will go smoothly but I am so happy to be down one and am counting down the rest.
Good luck to everyone and thank you all for sharing!!
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@michelle, I'm working full time, but like @sparklypink I work from home, so I can rest as I need to. Days like today, I wish I had the option to just take several weeks of sick leave while I get chemo. Wasn't anywhere near as bad as yesterday, but my tummy is still ultra-sensitive and I haven't eaten very well at all. Which makes it hurt more because, well, I'm hungry! I'm just kind of afraid to eat, at some level. Today it occurred to me that this is going to be like having stomach flu every week for 10 more weeks. No wonder people on chemo lose weight. I'm managing toast, soup, and I had a small smoothie this morning. Really hoping everything feels normal tomorrow. I'd just like to get up and eat a bowl of cereal in the morning without thinking about it, you know?
One bright spot: I have been for years a late-night workaholic, and normally I can't go to sleep until whatever problem I'm working on is solved - and if I can't solve it, I'll spin my wheels until 3AM brooding about the fact that I can't solve it. Tonight I have no desire to do anything of the kind, which means I might actually get a good night's sleep!
I'm checking in with my chemo-sisters and then calling it a night.
Wishing you all a good night of rest and a better day tomorrow!
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Hi everyone! Just checking in after a while. I see so many new names on the boards. Hope everyone is doing well and the pics of everyone look great.
Had my second treatment out of 4 for AC yesterday. Still was nervous, but I'm doing ok. The nausea meds (emend and zofran) are doing their job well once again. I did have a little heartburn last night so I took one Prilosec and slept on an incline and fell much better.
I did want to mention that about 5 days after my first round of chemo, I had gotten this weird response. The tumor seemed to grow a bit and the skin became red and swollen. I called the on-call doctor over the weekend who thought it might be cellulitis and said to see my regular on Monday. So my doc checks it out and said it wasn't cellulitis but inflammation of the tumor reacting to the chemo. Within days, the tumor was half the size it had been and much softer. I also wasn't getting any more pain from it. I had been getting some aches and sharp pains from it pre-chemo.
It was last been measured at 3.4 cm, but it certainly grew larger than that. There was another mass at 9 mm and at least 3 enlarged lymph nodes per the MRI and one confirmed positive lymph node from a biopsy. If the largest tumor is having this reaction, I can only hope for the best for the rest of these areas and any little fly-aways that we don't know about.
Be strong and we can get through this!
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I am a bit late to join the August group. I am 45, married with 2 daughters(17 & 20). I had my first of 4 Taxotere/Cytoxan on Aug 20. The side effects for me were minimal. My biggest complaint was abdominal pain/gas pains. I have had a headache pretty much every day since then as well. Day 7-10 I felt flu like, like my body was fighting something. I took it easy for a few days and felt much better.
I had gone to the gym a few times but have only done cardio. Yesterday I did cardio and some weights. It felt good to be lifting again. That has been one of the hardest things for me is not being able to weight train. I am used to going to the gym 5 days a week. With my bilateral Mx with reconstruction it has made lifting weights hard. I have done a bit but have to take it easy. I am trying to maintain as much normalicy in my life. I find exercise is my link to staying sane. My gym family has been super supportive as well, I can go there and I am not sick. I was in great physical condition when I was diagnosed. I sailed thru my surgery and recovery was relatively easy, taking it easy was the hardest part. Well today is day 13 and my hair has started falling out. I thought I was prepared for it. I cut my hair short and bought my wigs. This may be a hard couple of days. I guess I will go hat shopping and have my "Shave my head, and have shot" party with my girlfriends.
I am hoping for strength to get thru the next couple of days. Cancer sucks....but it doesn't know who it is dealing with. Thankful for all of the people in my life who have helped carry me the last few months. I don't know where I would be without them.
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Hi Michelle888
Re: working through treatment...I am also very interested in hearing from others about this. I am working at a full-time job and my hope is to continue working with as little disruption as possible during treatment. At least that's my goal. It all feels very unpredictable at this point. I came back to work as quickly as possible following my surgeries (lumpectomy and port surgery). Mostly, I felt ok and I was glad to be back in my routine (it helps me). But my lymph node incision became EXTREMELY swollen and painful about a week after surgery. I was sitting at my desk in a lot of pain. But no one around me knew what was going on. Kind of strange.
I have only had one chemo treatment so far. I scheduled it for Friday to give myself the weekend to recover. As it turned out, I felt pretty good over the weekend (just a bit tired). The side effects didn't hit me till Monday -- that was by far my worst day. I went to work but had to leave midday. The fatigue was overpowering. I went home and slept. I couldn't do anything else...just couldn't function. I started getting very depressed because I had no idea how long the crappy feeling would last. I stayed home the next day, too, just to be on the safe side, in case I got nauseous (meds worked pretty well for me, but I had some iffy moments...also had zero appetite). But the next day, I went to work, worked the full day, and have been at work ever since for the last 2 weeks. Other than some mild tiredness at the end of the day, I feel fine (I'm also still eating very lightly/carefully...had problems with diarrhea for a while...it seems to have gotten better this week).
The question is...will this pattern be typical? My next treatment is this Friday (grateful for the 3 day Labor Day weekend)...so we shall see. I will say, I am very fortunate to work at a company that has been incredibly understanding and flexible about my situation. I can work at home as much as I want (many people work at home...though I actually prefer being in the office)...I am using Vacation Days and Sick Days as needed...and if I have to take a leave at some point (or intermittent leave), that is possible. My HR Director keeps telling me, "One day at a time...we'll get through this". Which doesn't mean it's always been easy. I haven't told everyone about my health...only my immediate bosses and HR people. So I've been keeping this secret, and at times, that has been difficult (for various reasons). The most difficult time of all is happening right now, because my hair is falling out -- fast. Even though I am ready with wigs (I want to wear a wig to the office, not a scarf or hat), I don't feel at all prepared to walk into work wearing a wig. It TERRIFIES ME. I'm right on the verge of having to face that moment for the first time, and I'm scared out of my wits (anybody else have experience with this?). Even working this week, with my rapidly thinning hair (and hair falling on my keyboard as I type this) has been difficult. I already feel self conscious. I think this is going to be the hardest part of the whole ordeal. In every other way, I think (hope) I can push through it.
As to why I haven't come out to co-workers about my b.c...I just don't want to be seen as the "cancer/chemo patient". That would make me extremely uncomfortable. And I don't want to be treated differently. But I may end up telling a few more people at some point. It's going to be a long haul --4.5 months of chemo, one month of radiation, a year of Herceptin. And a long time without hair! (that's all I can focus on right now). At this point, it feels like forever.
Good luck to you...let me know how you do if you decide to continue working and how you handle it with co-workers. I am eager to hear what others say about this.
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