Starting chemo November 2012
Comments
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Hoping someone can help me. I had my first chemo last week and took 5 neupogen shots. Went for blood work today in prep for my next round, but my white cell count (neutrophils) are 0.3 - so the oncologist said they are dangerously low to even consider giving the next chemo. So I am now hold for over a week until I get them checked to see if they have come up. Any feedback as to what the protocol is regarding chemo and low blood counts. All my counts are very low. I am mystified!! Look forward to hearing others experiences.
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Adagio, when my MO dropped my Neopogen shots to 5, my neutrophils went to 1.5, not as low as yours but she upped it to 6 next cycle and remember mine started at 7 injections. So is she just hoping that they will come up in he next week? I think that they probably will as those on 3 week cycles unlike those of us getting dose dense, do not get Neupogen or Neulasta.
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Best of luck getting those numbers up, Adagio.
Marian, I so wish that you had spent a day with the Mohawk. So bad ass.
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Hey everyone! I meant to check in earlier but it's been a long day! And now I have my steroid induced insomnia so I thought I'd take this time to say Hi and see how all the Thursday gals are doing?!
I must say....the treatment time itself is quite relaxing for me...hope there are others that have the same experience! A blanket, pillow, recliner, nice nurses, and 4 hours with my hubby without hearing "mommy, mommy, mommy, MOMMY"! Kinda a crappy way to get time together, but just trying to be positive
Luvbugs....again, your dinner sounded amazing!! Yummy! If you don't mind sharing your soup recipe, pls do!
On a "personal" note....what stool softeners is everyone taking? Senna (senokot) and Metamucil were recommended but I already have miralax for my kids and dulcolax for when I had my surgery....does anyone take those? -
Lovebug glad it went well.!Round two was relaxing here as well, a long day, but by the time i got through emails on phone and Pulled out trashy escape magazine i could feel the drape being pulled down, or the fog roll in -pick any metaphor- feel okay now but had to switch out some meds due to liver issues in blood work and will start ulcer med practively and Clariton for shot tomorrow, but still dread when the chemo passes the steroids and hurts for real with forces me into the little old lady crouch... but at least we know the drill to resume activity slooowly.
MarianeE - i'm a 3 week TCH with Neulasta shot 24 hours after.
Nancy44 can you get rx for Emend for next round? Pricy but amazing for nausea
Thankful, Senna is in an organic form in Smooth moves tea so i use it with generic stool softeners but it made a huge difference round 1.
Best wishes for sleeping more than 4 hours ! -
Adagio - my first TC chemo was mid-nov. on day 8, i went for the blood work after the neupogen shots i had been given and my neutrophils were 0.07, so incredibly low from my perspective. i was told to put on a mask, not leave the house, and start antibiotices (had a fever). They upped the frequency of neupogen from every other day to daily, and when I had the next blood count done, the counts were normal. so don't dispair, it is incredibly stressful, but hopefully if you are given more neupogen the counts will rebound. i was told i will be fine for my next chemo as once up, MO said it stays up. i hope the MO is right. chemo is in a few days. i expect i will be given more than 4 shots next round...
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Biopsy is on the 7th. Mo did a cancer antigen test and it was 20.70. I have no idea what this means. My dd who is a rn said it means I have no breaste cancer in my body. But I still don't understand any of it. I have appointments everyday next week, for bone scans, mris, of head and hip bones, Ct scans. I am so confused and I'm trying to be positive like everyone wants me to, but it's so hard. Mo suggested depression meds my po prescribed prozac. I haven't started taking it yet. Thanks for letting me vent and ramble. You guys are great!!!
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maychen - can someone explain it to you? i found it impossible to be positive when i didn't know what was going on. information was key for me to feeling like i could deal with what i had. when all you have is questions and fear, it is so hard to stay positive. i hope you get the information you need, and if the prozac helps, fantastic.
marian - did you take neupogen every day when you had 6 or 7 shots? or was it every other day? i was started on 4, every other day from day 4. i was told anyone on TC had to take either neupogen or neulasta because TC comes with a high risk of low neutrophils and infection without it. 4 wasn't enough for me rk clearly, or wasn't often enough, so curious what the other options are for next time.
adagio - can't you ask for more shots to get it back up, am curious why they are leaving it that low. i was told when mine was so low i had to get it back up, that it wasn't safe to leave it that low.
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My wish is for better days ahead for everyone!!! Seems like some of you girls are having a really rough week = don't know if this will help your numbers but maybe you need some protein . I only get 1 Neulasta shot per chemo, so I have no helpful information for you. It is 9:30 am Friday and all I want to do is sleep.
How are you working girls and moms making out? I can't imagine dragging myself out of the house every day. Sending hugs and a big
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I am trying to educate myself through the Internet but it scares me more then what the docs are saying. I have talked to all my Dr,s and they are mostly positive. My mo is the one that is freaking me out. She says if hip is mets from Bc then instead of a stage II she will have to stage me at a stage IV. My surgeon says he doesn't think the Bc metastasized. So I am in limbo until after all the test next week. I was not looking forward to chemo, but now I am anxious to begin, so that I feel like I am fighting this cancer crap.
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nancy, sickofpink mentions Emend and I had it for all A/C cycle and no nausea and vomiting. Just had it and Zofran pre chemo with the dex and then dex and zantac after.
sneaky, I too wish I had kept the Mohawk for a day but at least Mary got it on film for posterity. Will be thinking of you on Monday.
Megan, my MO orders my Neopogen for every other day regardless of number of injections. She says she feels every other day is easier on the S/E though clearly others think differently. But I have had no S/E so happy with that.
macyhen, hope you can hang in there until tests rather than than using the Internet which can be scary as you say and not always helpful. I call the "waiting game" one of the hardest parts of this whole BC thing.
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Maychen, my heart goes out to you. I agree with you....the Internet can be a very scary place and I have learned that other than this site, I really try to stay off of any other sites. Your MO owes you proper explanation of all this. That is their job. I wish you the best....you have a busy week ahead and by all means if you need to take something to help calm you a little bit, you should. I'm on Xanax and it sure helps.
How is everyone doing that had chemo this week? I didn't sleep a wink last night....not a single wink. That steroid sure does a number on me! Last time around Monday and Tuesday were my bad days....I'm bracing myself!! -
had my first chemo on monday..yesterday and today are the wall days i guess...didn't have to take anti nausea pills yesterday but did take one this am...slightly queasy ...woke up later with slight temp...just feeling blaahh right now and no energy to really move...will have to give gingerale a try next time...nap time and ive only been up for an hour...lol...next appointment is dec 17th so looking forward as to the se that i can expect...just some mouth tenderness right now and lots of flushing...have to remember to get all the water in..chems out...
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Maychen, I'm with 5Lovebugs and wish you could switch to Neulasta to only go in once for a shot.
Macyhen, I remember all those mysterious tests a few weeks ago (seems like forever) and asked the nurses/radilogist giving me the tests exactly what was going to happen before I got undressed. Thinking ahead might have made me more nervous - plus my doc and nurses had so much else to explain and I didn't know what other questions to ask!
Thankful, I haven't used ativan my doc prescibed for sleep yet, but I did have alow dose Marino, the pot pill which just made me sleepy and really helped me get some good hours between night sweats.
Mariane E - yes avoid all other internet sites - we can be more specific to your needs and already love you. We need you rsupport too, so it goes both ways. My surgeon was reluctant to even give me all those diagnostic codes (thry were on the printout but like a different language) since he got all of it out. And the scans to chek for any other areas are not as bad as you think - take zanax on the way. An they call quickly with results so no need to woryy, just figure each appt is just another thing on you to-do list. I don't know much about zoloft but doesn't it take a few weeks to get in your system as a regular help?
Back at you 5Lovebugs, still gliding on steroids, but took SEVEN diif meds already and will avoid getting out of bed until off to doc for shot. Rain helps. Hard to avoid work stuff online though maybe I should Save as Drafts in case I write something odd?
Have a good day, all!
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I find it best to avoid doctor google at all costs. Hang in there. I have seen such amazing things happen in breast cacncer in the last ten years that it make me cry tears of hapinesse. None of us choose to be here, but i believe we will all come out on the other side.
The strong and positive stuff I just started ignoring. We have to do what we have to do. That's survival.
5 Luv, thanks for asking about us working/mommy types. I am blessed to work from home, I teach so it is still a full day, but I am making it. The house looks like hell in a hang basket. I signed up for a the cleaning for a cure, but never heard back. The kids are doing okay. Daughter is at school and thriving, and my sweet baby boy is taking a nap. I have mom guilt, but if mama isn't healty she can't take care of her babies!
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Macyhen - surgeon told me I would drive myself crazy searching to diagnose myself on the internet. From my experience, one test leads to another which leads to another then you get the all clear. Sending you hugs!!!!
Adiago - have you asked your doctor about Neulasta? Not sure if it's possible to switch but it might be worth a question. My aunt is going thru chemo for colon cancer and has had problems with low WBC counts. She started eating more red meat and her counts went up. Not sure if that is the reason but....like 5luvbugs said protein.
I had to wear a hat today to work. Broke down in tears when I first got here. Got several hugs. One from a BC survivor herself who is my rock at work. Felt better. Today is day 15 after 1st treatment and I feel like my normal self except I'm shedding all over the place. Touch hair and 20 come off in my hand. Rate this rate I'll be bald by Sunday!!
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sickofpink, not me on the net! I was just giving advice to macyhen and agree with you about not going to sites that can scare rather than help!
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I also get tired of the "be strong", "think positive" sentiments. I know that means well and it there is indeed no point moping about but a) I don't believe it's really going to affect the success of my treatment and b) "see how 'positive' and 'strong' you feel when you are spending 2 hours a day on the toilet, everything tastes disgusting and the steroids make you feel like you want to go to sleep and never wake up. But hey, SMILE!!"
AMEN Sistah!
Michelle, you are so right.
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Macyhen, you said the MO thinks this and the surgeon thinks that. They are not sure and for the time being they can only offer you different scenarios. That's why you're having all these tests next week. The tests are going to shed some light on your exact situation. After they get the results, they can tell you with more certainty exactly what's happening.
Some of these tests are uncomfortable, some are irritating, some you won't even notice. Don't be afraid. Chemo is worse :-)
Here it's not a standard procedure, but I asked to have all these tests for my peace of mind.
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Junebug, losing your hair is bad. People don't understand that. They say: oh it'll grow back. Oh yeah? I don't see you getting a buzz cut voluntarily.
Only the ones who've gone through something like that can understand. Cry whenever you need too. Get it out of your system. There're going to be bad days and there're going to be good days.
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Thanks sisters! I love being able to talk frankly with people that have gone, or are going through simular situations. Hugs and kisses to you all!!!
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Had chemo #2 today and it was much quicker than the first. Still, I worry about the nurses' knowledge, or rather lack of, of the scalp cooling. They came back after 20 mins of cooling to start my chemo. It should be 30 so I sent them away! Again the top of my head wasn't in contact properly and is where I'm shedding the most hair. I guess without any head covering it would look the most stupid place to be bald but with thick headbands or scarves it would like fine as I'd still have some length and hopefully my fringe. Getting tired of wondering what will happen now. But, it's day 23 and still a full head.
Feel okay so far but just tired. I went out for a meal with work mates as a friend finished work to go on maternity leave today. Plus I didn't get to sleep till 4am this morning. No toilet trouble this time. Keeping off the senna until I get constipated - I've learnt my lesson! Will see what tomorrow brings... -
Thanks for all the responses. The MO did consider giving more neupogen, but for some reason decided against it - I guess she wants to see if my body can do the work itself!! I am fine with that. I can wait for the next time in the chair - next time she has me giving 7 shots of neupogen daily starting on day 3 after chemo. So it will be very interesting to see what happens. In the meantime, I have to look after myself and stay away from anyone who is sick. She said I can still go out and about - no restrictions - except if there are colds and flus!! I will probaby stick close to home - although - I just went for a massage and then a haircut - since the hair is going to be sticking around a while longer now!!
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Thank you ladies for the Emend tip; I will ask the onc about it. Nausea is under control now; just really sore and tired. Felt like a chemo flunky because I felt pretty crappy from night one; didn't seem to get those two "semi-good" days others sometimes mention before the bad stuff really comes.
Two days out; tired, really tired and scared what days 3 and 4 will bring. Did not make it to work and the guilt is horrible but I couldn't even pour myself into a car right now. Blessings and strength to those of you who are able to do so; you are inspiring.
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Hello everyone. I was a first dose chemo gal on Tuesday. Had the chemo cut on Wednesday and purchased a wig. Tuesday night and Wednesday I had horrible nausea. I had an arsenol of four medications but am still dizzy and nauseaous four days later. I am trying to walk and do some house chores but it is difficult. I visited work yesterday; MO suggested I stay out at least the whole first round to see how I do. Also a CT scan of the lung showed "nodules" of less than 1mm. They can't rule out cancer and can't say the nodules are benign. Has anyone else had this happen? The MO said that we will just repeat the scan in a few months. Thanks ladies for your sharing!
Wendy
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I got my first chemotherapy yesterday. I am supposed to get 6 FEC plus 12 Taxol infusions. I had an horrible night with nausea, stomach pain and vomiting, hiccups (!) even though I took Emmend. I remembered that the next day I was supposed to take Prilosec and zantac to avoid gastritis and took them then and that stopped the worst of it. Today I was supposed to get the stitches from my port surgery off and it seems someone ate at the office and the smell got me so nauseus I had to leave before it was my turn. Anyone has experienced this? Does it get better or worse? I am dreading going to the next treatment!
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Macyhen111, in my opinion people are not going through this have no idea of how annoying it is to tell us to stay positive. You will have good days and bad days and you have the right to express how you feel and not get the standard answer to just be positive. It is almost as if they were telling us to shut up! Here you will find people that really understand you. I hope you get all the information that you need. It is stressful to be in the dark.
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Wendymartha-I also have a lung nodule that was found in August. I have to repeat scan in January. The report said "most likely consistent with a granuloma, however, given current clinical history, neoplasm cannot be excluded". Eek. I am an x-ray tech and know that benign lung nodules aren't uncommon....however, I'm still nervous because it's ME!! My MO and breast surgeon both said it's about a 1 in 200 chance that it's cancer given my breast pathology report....but I'd be lying if I said I wasn't nervous! I think this is gonna be part of this cancer journey tho....every little thing that pops up in our body is gonna concern us because we've had cancer. It's the nature of the beast! Quite honestly, if I didn't have breast cancer, I wouldn't even think twice about my lung nodule...I see so many benign ones on chest X-rays! Hang in there!
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Hi ladies,
I am day 11 post 2nd chemo...feel fantastic other than sore feet!!
I too have a lung nodule which onc said not to worry about also ...at the time i had a chest cold but regardless was told not to worry and that it was scarred tissue from previous radiation to chest! (Yeh no probs dont worry, easy for docs to say)!!
But yes, apparently very common and people wouldnt even know they have them unless a ct scan was ordered for something else! -
Nauesa I don't get it! You girls who have nausea, are you getting any steroids or Emend or something like that to prevent nausea? You really shouldn't get sick = there are so many meds the docs give to prevent it...
Hair I haven't lost all my hair yet - it fell out in droves from day 15 to day 20 then it stopped, so I still some (not much) but I imagine that after the second treatment I had on Tues, the rest will be falling out soon....Still, I can't go out with out the "cranial prosthesis" - I'll make some scarfs if I get any ambition....
Hope everyone has a good weekend, hard to believe tomorrow is Dec 1 = but no one is leaving this board, right???
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