Cytoxan Taxotere Chemo Ladies- February/March 2013
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Colette, I also had terrible pain from the Neulasta after my first tx. It started on day 4 in my legs and joints (and even my teeth!) and then went to my hips and lower back. That all lasted for several days before I ended up in the hospital for a urinary infection. I felt like the pain was all jumbled up and I couldn't tell if it was the UTI or the Neulasta. I also took Vicodan without much relief. Once the Neulasta kicked in, my white count and neutrophils shot way up and I was so glad that it had worked! The pain was less severe after my second tx and I switched to Percoset which worked better for the bone pain and the headaches I was having. I go for my 3rd shot today so we'll how it goes this time. Maybe if we're lucky it will be less each time! But don't hesitate to call your MO with pain that severe. They may have something else they can give you. Hang in there, it will get better.
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bikergirl, thinking of you and hoping things go smoothly. My treatment was very uneventful thank goodness. On my way to get my shot and an ultrasound on my shoulder, then to the couch! Take care. Good luck to everyone else getting tx this week!
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If you gals have questions are what happens after active treatment is over, please ask whatever you want here. I finished chemo a year ago and my Herceptin this past March. I am a member of several private closed facebook bc groups. One was started by the BCO gals I was travelling with through chemoland and the second is another BCO chemo group (September 2012). I can tell you that post active treatment is a time for recovery, both physically and emotionally. Some need support and help to see them through the rest of active treatment, recon and maintenance ( continued exams, mammos, hormone therapies) If you would like to start a facebook group with the gals here, it is easy to do that.
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Collette-I have been having some issues with lower back spasms..my onc prescribed me Flexeril for this weekend. Mellie, does that seem to help? Mainly, I have just lived the past 2 treatments on a heating pad..although, its not constant spasms..Thank goodness!
Yesterday, i went to the onc..he said I needed to repeat my CBC blood work because Friday my counts were below the "acceptable range". I asked him if they weren't back up what would happen..he said we would have to delay chemo a week. I was sooo glad when they called today and told me they were back up. Well...kinda glad..just want this over with..However, am dreading this 3rd one. I asked the nurse (not the onc..as did not want because of pain ya'll are describing) did they not prescribe the Neulasta shot. She said only if, like Mel said, you become anemic from the chemo. That the side effects are major on it and insurance issues as well. I am fine with that. I have been having the muscle weaky pain between chemo (not during the actual first 6 days)..and sure don't want anymore.
I went out and worked in the garden some last week. Muscles were killing me..however, was a good sore. I felt useful. I've sat around since April 16th..4 surgeries then FINALLY chemo..have been on one restriction or another all these months..then when I finally felt better...chemo..so have not been out since last summer. I can't blame that on the chemo..lol..lazy muscles! But, I did feel weakness days before.
I have a friend that is doing her chemo every 2 weeks. She is not on this type though. I was told to do the 2 week..they "water" it down..and you end up doing an extra one..so either way, you are going to do the time.
For those that have had #3..is it really so much more worse? She said way more weaker and major fatigue..and longer to get over. Honestly, I HATE the first 2 days, as well. The nausea meds/steriods give me jitters and make my brain feel foggy and exhausted at the same time. I took ativans through the first 2 days last time..Also, icing my mouth again..worked wonders! No pain/buring or anything with mouth 2nd time.
Hugs to all !
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ckmoss-
Had #3 of 4 treatment today. Will let you know how it goes. I asked my onc MD about the muscle pain-I too have been working a little in the yard and picking up my 9-month old grandson and told her I was having arm and back discomfort. She said it is NORMAL (glad to hear). I took ibuprofen once, but trying to avoid taking alot of meds.
Will keep you posted on how SE's are with #3. I have not needed the Neulasta as yet as my counts are good. Must be robot cells from my over 35 yrs. of nursing (over 30 in the Emergency Dept.).
Be well !
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Twohobbies-
Congrats on finishing chemo. Take it easy, though. I heard rads can make you feel tired, too. Don't push yourself.
Keep us up to date. My last chemo is scheduled for 9/25 and then I will be joining you on the rads thing.
Take care!
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Thanks for all feedbacks about neulasta pains.
My onc switched me to Neupogen for the next treatment, but now I have to wait until Neulasta leaves my body, and it can stay 15 days according to onc.
Neupogen is more shots, as it stays in the body 24 hours only, and onc prescribed it every other day, with a blood count each time until WBC is back up.
For now, the Neulasta worked, WBC is sky high, but the price was stiff.
Thanks for sharing your pains, it makes me feel less scared and less alone.
Colette0 -
Don't stress too much over #3. It is worse than 1 and 2, but only marginally. Maybe 1 extra day if that
Re neulasta pain anecdotally I reckon more pain = neulasta working better. I had minimal pain but my WBCs were less than when I didn't have it !!! Weird !!!0 -
Two weeks post chemo 4. Still major energy issues but I only need ibuprofen at night. So the bouncing.back is slow. Very slow.
I didn't really find any chemo round to be harder overall. Some symptoms would be a little better and some would be a little worse. But I was one who got hit hard from the start.0 -
Carmen, what are you wondering about? I am still here and probably will be lurking a bit for some time! Ask away! I finished chemo 3 months ago. I am taking Tamoxifen. (I did not have rads or reconstruction so chemo was the last step for me). The first 2-3 weeks post-chemo were similar to all my other chemos (though maybe a bit worse due to cumulative effects). I feel like I have bounced back pretty quickly since then. I am doing normal activities but sometimes need to take more rest breaks or turn in early at night.
Most of my chemo side effects (neuropathy, achiness, sleeplessness, etc.) improved or vanished within the first month or so. My eyebrows & lashes fell out all through treatment & kept falling out for a month or two afterward. By the second month PFC I had armpit/leg/pubic hair again and a thin covering on my head. Now at 3 months out it is thick but very short (1/2" maybe?), color is a bit lighter with more greys (I am 30 and used to have nearly-black hair and rarely any greys!) Also seems straighter but too soon to really tell. Most of my brows/lashes have come back. My nails started getting funky about a month after... they lifted up and turned white/yellow but did not fall off. I've been keeping them short & wearing nail polish as they grow out (there are still ridges, too, for each chemo round).
Emotionally I have been all over the map -- definitely much calmer since chemo is behind me. Definitely hormonal thanks to chemopause and Tamoxifen. Still having hot flashes constantly. I go back & forth between wanting to talk/read about BC and wanting nothing to do with it. Often when I do read about it I get more angry/depressed, but in a good way I think (processing it all). Mostly I have good days and feel pretty decent. We just went camping & canoing!
What else? Ask whatever you're wondering!!
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For those asking about rads timing, my RO said he likes to start 3weeks after chemo. I go for planning next week and start the following. I found that someone has started a Fall2013 rads thread, so come join me when you're ready.
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Ending day #3 for me. Has been pretty much the same as the other two..EXCEPT..have been fighting queazy. I finally gave up and took nausea meds he gave me. I'm not to sure if chemo is causing queazy for antibiotics I am on for inner ear infection. Or flexerill.
Indenial-question==I am having 4 rounds and last round is Sept 26. I am out of work through this. I tried working but was missing too many days due to chemo SE lasting longer, than half way through 3 weeks, would get fatigue all over again when my cell count dropped. Anyway, I am trying to decide when I should go back. I had originally put in for Oct 5th. Thinking about just that week of chemo..but, now, thinking maybe I should wait a couple of weeks until I past. I know everyone is different but when did your cell count drop start going back up for good? I was out 3 months prior to chemo for 3 surgeries so have used my FMLA..Verizon is holding my job due to disability. If I go back , I can't be out again . Ok....Im rambling now..chemo makes me feel like I'm on drugs..bad ones...lol
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Hi Ladies,
Hope everyone is having a good weekend.
indenial - you answered everything I was wondering about. Thank you!!
Currently post treatment #3 and I don't have mouth sores per say but my lips are sore, I mean not chapped sore but burning sore. My fingertips started hurting today. Will this go away before my last treatment? What can I do to stop them from hurting? I know my MO gave me ice to have in my mouth during chemo for mouth sores which really helped this last time. Do I do the same with fingertips?
I cannot wait til my last treatment September 19th! I'm sure I will have same SEs and they might be worse or they might be a little better but at least I won't have anymore to deal with after! LOL
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Ckmoss, my onc does not do any follow-up blood tests. Well, I will have one before my 4-month follow-up, that's it. But based on how I *feel* (which may or may not be accurate!) I think my immune system is still struggling. I think I was past the "danger zone" after 3 weeks but still run-down, and at 6ish weeks caught a bad cold (in the middle of the summer!) and feel like I still need to avoid high-risk activities. OK I'm babbling but not really answering your question!! I would give yourself at least 3 weeks before going back to work. A month or even 6 weeks would be better, but I know that's not always feasible! The worst of the fatigue subsided around 3-4 weeks but it still comes & goes, especially if I'm not careful about resting often.
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indenial + Ckmoss, I suggest going to work based on how you feel, as every day will be different. As for me, I do my nfusions on Fridays + have the weekend as down-time, if needed. I'm glad we were closed on Labor Day because I did not feel great that day.
My first nfusion was Friday, August 9th. Praise God that I have not missed a day of work nor do I plan to. Most days I felt great + operated at 95%, partly because I made a decision to feel good + not let chemo get the best of me. Chemo will not steal my life or joy nor will I surrender or bow down to it. I AM more than a conqueror in Christ Jesus!!!
Anything can happen. But I suggest that you plan to feel great or at least well every day.
Listen to your body it will tell you what you need to do. Eat good foods, drink plenty water, exercise, take vitamins including iron + expect the best.
We are very different + respond to side effects accordingly. You may not feel as great as some of us + not as bad as others. Let your experiences dictate how you move through this season of your life + take it one day at a time.
Expect to feel good + have great days. The mind is the battlefield and as a woman thinketh, so is she. Think thoughts of wellness, health, peace + joy. Not thoughts of fear, doom, infection, pain, unmanageable side effects, people sneezing on you, etc.
I tend to see the glass as half full.
If possible (like my sister said) don't just sit like a lame duck feeling good but waiting for every possible side effect to come upon you. Work, if you can, it takes your mind + attention off yourself and onto something or someone else. We feel better when we help others. Of course where you work matters, so take that into consideration.
My granddaughter sneezes + coughs all the time (I think due to allergies). Praise God (again) that her coughs + sneezes have not affected me or my blood counts. I'm more concerned about the pesky invaders in our homes than I am of those outside.
BE well!
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Reality check=I've used Blistec in the little blue tub..it helps for lips. I, also, use listerine or the generic equivalent for my mouth..burns like heck, but has kept me where I do not have mouth burning..oh and Biotene is good.
Indenial=I'm thinking about 3 weeks after last infusion as well. Really don't want to be out longer than that. I love my job and things change tech wise so much there, that being out long really gets me behind. However, I don't want to back, only to go back out on disability. Really messes up your paychecks for awhile.
FormyGrand- I understand what you are saying. And I have always been described as a positive person. However, I've been told by oncologist and nurses, that when you are in the NADIR zone to not go to busy places or around a lot of people. I work in a call center with over 700 people and when the..for example..flu goes around, everyone gets it. My oncologist said that when our white cell count is down (and gets lower and worse every infusion) that our immune system is severely compromised and what would be a "sneeze" or just a cold, could put us in the hospital..as there is nothing to fight it off or keep it "low grade". The problem..for me...working through this is ..yes I know that its going to take 5-6 (judging from my 2nd infusion)days to get past..and then I feel ok for about 4-5 days..then that NADIR hits and its like the fatigue from the chemo all over again..this, not only causes, fatigue..but..again, with me...I have trouble concentrating and memory issues. Which more than likely are from the the tremendous fatigue. It is hard for me to drive, much less take very complicated calls at work.
Not really sitting waiting .."like a lame duck" for SE's to come..just realist in knowing how this is affecting me. I do not have the luxury of just taking off when I am hit with these side effects..as FMLA all gone from surgeries and disability you have to be out 8 straight days for it to come into effect. I tried to work, and was just to hard for me. I'm very glad that you have had a easy time with it..and hope that will continue for you.
Well, one good thing..the Flexerill has seemed to calm the horrible kidney, liver, diaphram muscle spasms that I was getting from 1st 2 infusions. I only take when I feel kidney starting to tighten...WOW! That hurts! The meds make me drowsy, but was told to rest as much as possible..so no worries there.
My mom made a shrimp and crab quiche last night for me..only ate a small amt..I stick to mini meals..but it was great!...one of the few things I've been able to taste!
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I have been lurking in this forum for a couple weeks...mostly reading through past posts and taking notes. I will begin 6 rounds of TC on Sept 20. Like everything else, the wait seems to be the worst. I have the green light from my MO to ice my fingers and toes to help prevent neuropathy, and also to take B6 and B12 vitamins. I am considering L Glutamine as well because in my job, I must have good feeling in my fingers. Are there any oher vitamins anyone has found helpful?
Assuming my wig(s) come in the mail in time, I plan to shave my head in the days before my first treatment so that I do not waste time worrying about it.
Surgery and recovery were cery easy for me. I had good luck. I am hoping to exercise as much as I can, eat what I can, drink a ton of water, and pray lots that the side effects are managable.
Thanks for such an informative forum.0 -
Welcome Kbee. You'll have a couple of weeks before hair starts shedding but I do recommend getting the wigs and practicing wearing and combing to get used to them.
I just have to say that chemo treats everyone differently and if you find you can't work there is no shame. Had I gone to work someone would have had to drive me home many days because I was not awake 8 hours. Not to mention actually being productive.0 -
Are you taking vitamins + iron?
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cm bernardi, The AMerican Cancer Society gives free wigs and other things. Call the national number and they will get you in touch with your local chapter. I have a 100% human hair wig and it's great. I styled it like my own hair and no one knows the difference until I tell them.
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Sitting here, hoping I am not getting sick. This is Day #5 after #3 TC treatment. Energy low and keeping an eye on my temp. today. Feeling today that I can't wait for this crap to be over. The first 2 treatments went OK. No symptoms, so I don't know where this is coming from. Might have to call the onc doc later.
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I am a firefighter/paramedic, so I am automatically off work, which makes me incredibly sad. I love, love, love my job. That being said, I do a lot of the education for the department, so I am able to do a lot of the planning from that at home and still get hours as I am able. For that, I am very grateful. The waiting, of course, is enough to drive you crazy, but obviously everything needs to be completely healed from surgery for chemo to start. Must...have...patience...........not one of my strong personality traits.
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Hey Kbeee-
Should call you sister. Served as a FF/EMT from 1978-1984. Spent over 30 yrs. as an ED nurse (taking a little break now).
Patience is usually not a trait we have in this field. You can do it though.
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TwoHobbies and ckmoss, thank you for your realistic comments about working through chemotherapy. Not everyone has a job where you can go day by day depending on how you feel. I have to have enough notice to call for a substitute teacher and then spend several hours writing plans for that person to carry out - and that's just for one day. I tried hard to work as much as I could, only to find I had worn myself out and become exhausted and then the next infusion came around. It was very difficult for me to get to the point where I said I would not be able to work during this cycle. I want to be with my students and I don't like being at home. But sometimes that is the most mature decision to make. I hope that the main reason most of us are here is to support each other in whatever decision we each make. I haven't ever planned to feel bad but you can't deny that these are very powerful chemicals going into our bodies and yes they do have an effect on us. Loving and non-judgemental support is what has kept me coming back to these discussion boards day after day for the last 5 months.
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JeriGrace-
The important thing is to take care of YOU. Teaching is not something once you leave the building you are done. I am not a teacher, but have a great respect for all teachers.
Take care of yourself.
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ckmoss-
My last tx scheduled for Sept. 25th. Feeling a little more tired this round. I agree, you might want to wait a little due to low counts during the Nadir period. Can't wait for this to be done. Looking forward to a great 2014.
Take care.
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JeriGrace - I have a computer job & I couldn't even clock in half a weeks worth of work last week. I'm starting to wonder how anyone works thru chemo.
Formygrand - I went into this fully expecting I'd work & only need max. 3 days off per cycle. That's what my onc. said was possible for me. I'm young, strong, & healthy, & was as positive as could be. Despite thinking the best, chemo has whipped my ass! For chrissakes - we are voluntarily poisoning ourselves! Chemo's side effects are not something that can be wished away or prevented merely by thinking they won't happen. Nobody is sitting & waiting to get SEs - it's highly offensive to even suggest such a thing.
I'm now looking at going on disability bec. I'm not sure I can work enough hours to pay my mortgage. This is humiliating but I have little choice. I can wish & hope & pray all I want but I still get dizzy & lose focus when I sit at the computer for more than 2 hours. It's not fair to my employer; I won't be able to meet deadlines or do the quality of work necessary. And thinking positive thoughts won't pay the bills.
I'm happy for those who aren't experiencing many SEs, that's great, good for you. But please don't go blaming those of us with SEs for bringing them on ourselves.0 -
Thanks for your posts. Well said.
Batcat=That's how I was. I was killing myself too trying to make up hours that I had missed. Working 10-12 hrs on days I felt "ok". Then 2nd infusion came...and knocked me down even longer. 6 days out from 2nd chemo, I gave up and called disability to have claim reopened. I called to tell my supervisor and was could hardly get it out was crying so. I was suppose to have started training for Trainer when I was diagnosed. As hard as that it was, it really really felt good to just let go. It was just as well...Id have missed 4 days through initial, then 1-2 more through Nadir time..then right before 3rd treatment..my levels dropped so low that wasn't sure I was going to get to take chem the 3rd time. And boy could I feel it..dragged down!
KBee=Welcome! I did a simple buzz cut 2 or 3 days past 1st chemo. Like you, I figured I was going to have to shave it anyway..so cut out the middle man (clumps falling out)_About 2 days after 2nd chemo..hair that was buzzed started coming out..all in my sleep caps etc..Didn't realize that it was that long! ...about inch and half...so had my husband ..not shave..but very very close..Half to say, I cried through last part. I think part of the weepy was from being so tired from chemo. I've noticed..through surgeries, etc..my lowest wailing point was when I had no sleep and was frustrated. I take multi B vitamins and claritin every day..even on off chemo days. Prilosec I take day of chemo until 3=4 days past. OH and an aleve ...my onc RN told me to take ativan through first 2 days as steroids make me so jittery I can't stand it. I've done that and its worked well!
Also, in ref to wigs....most insurance will pay. I got mine for $180.00 (after 20 percent store discount)..insurance paid their part..my part was only 75.00. FYI-Insurance will also pay for cami's. Not sure if you have drains, but the cami's are wonderful! There's a lady on Ebay..if anyone wants her store address...sells night caps she makes herself. 4.95. I bought 5 and have lived in them..lol..well, not outside house..they are obviously simple and for night. But they are light cotton and don't make your head hot, but keep out the chill. She stitches them for chemo patients (as her friend was one) so they dont have seams that hurt your head..etc.
Ok rambled on a bit now..I hope everyones treatment is going good! The 3rd time for me was kinda like I thought it was going to me..a bit worse and appears to be going to tack on another day of fun!!
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Kbeee-
Also check out TLC website-have hats, scarfs, misc. items for the Cancer warrior. Your mouth will get dry from chemo, so purchase Biotene mouth rinse-my onc nurse told me to brush my teet and use Biotene 4 times a day-have not had any thrush and my dentist said my mouth looks good. I purchased Quezy Pops online for nausea, using the Compazine first 2 days after chemo, but these things are natural/no SE's.
You have come to a discussion board where there are those that will support you while you go through this.
Take care.
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JeriGrace, there is no shame in being unable to work through this! It's not a mind-over-matter thing, no matter what anyone suggests. Of course it's probably good to try to have a good attitude & hope for the best, but you're getting CHEMO. Chemo kills all your cells. Even the brain cells that you're trying to use to mentally overcome this! I found I handled the first round really well but they just got progressively worse/different. I don't know if I could have worked through treatment but I doubt it. I was certainly glad to have help taking care of my son many days. I was really glad to be able to camp out on the couch as much as possible. I also tried to keep up most of my daily routines & walk every day, but it wasn't always possible. I'm glad some people have an easy time with this treatment, but I wasn't one of them, and it's OK if you're not either. No judgement here. You're busy killing cancer cells! You're awesome!!
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