Anyone Starting Chemo Jan. 2010?

georgiabirdgirl · February 2010

paddlegirl- i am so sorry about the infections, port removal, and overall disaster that occurred after your chemo. I guess it highlights the complications that we all hear about and know that we are trying to prevent with the neulasta and neupogen shots. It's hard to second guess your oncologist, because you need to be able to trust their expertise. But, in this case, it seems like it was warranted. I know you aren't the only one who is getting neulasta (if needed) but it seems like they dropped the ball on when to test your blood to see that it was needed. Also, I think others who aren't getting it prohylactically get some serious antibiotics in the meantime. I could be wrong about that though. I have to say, that I was worried about the side effects of the shot and the expense, but in the grand scheme of things it seems like the best option to keep you healthy enough to get through chemo.

DonnaP- I am sorry about your recurrance. That has to be scary, but I guess it is a good thing that they found it so quickly after your treatment. I originally went for a lumpectomy so that I could discover how bad it all was. They got clear margins, but found it in my lymphnodes- after the sentinel node biopsy came back negative. Frown They also had to do an almost quadrantectomy taking 20% of my breast. The next step is to finish chemo, then get some more tests (mammos, breast mri, etc.) and decide what needs to accompany the completion axillary dissection. I am thinking now that I'm going to choose the bilateral mastectomy with reconstruction. It seems to make sense to me. It also means I probably won't have to have rads. Hopefully, it will dramatically reduce the chances of having to go back through this process again. But, we'll see. I still don't have a complete picture of my diagnosis, because they haven't seen how many nodes it's in yet. One thing at a time!

As far as the taking of Claritin goes, my doc said to take it for 5-6 days. 2 days prior to chemo and then the following 3-4 days. He said that the anecdotal evidence that it reduces pain from neulasta was overwhelming that it helped, but no one really knew why.

I'm out at work today with no hair and just a head covering and feeling pretty good. I'm going to force myself to drink a lot and take some naps to head off the crash that is probably coming mid-week. So far my SEs this round are minimal (BIG KNOCK ON WOOD!).

Take care all

11tyBillion · February 2010

Hi ladies! I has been over a week since I have been able to visit you all, and there was so much to read and catch up on! It is all a blur, and only a couple of things stick out in my mind right now ...

I think i am going to go look at wigs this week before treatment #3. I thought that the scarves were going to be enough for me, but this whole lack of hair thing hit me harder than I expected. I thought that all of the pretty scarves I have (a lot of them belonged to my b/c survivor grandma) would do it -- but I am feeling SO self conscious. This whole b/c, and what it has done to my body (bi-lateral, purple port lump on chest, no hair, and soon no ovaries) just makes me feel like a hand-drawn stick person. ugh. My entire life, I never really had body issues ... now it seems as though I am making up for lost time. Now, the body issues compounded with the whole never ending Cancer on my mind ... I just hope that some day I can step beyond this, and get back to having a normal life AFTER Cancer.

I am coming up on treatment #3 on Wednesday, and it seems to me like my worst days are 3-5, and then for some reason, I bottom out again on day 10 (hit by truck day) or so with cold-like symptoms, that dissipate over the days leading back up to my next treatment. I wonder if that day 10 is what they call Nadir (lowest WBC) and the cold-like feels are my body trying to ramp up my systems defenses? Does anyone else have this?

Soo far, (knock wood) no Neulasta problems. I am getting kind of freaked out anxious about treatment #3, and I don't know why. I keep reminding myself that there will ONLY be one more AC treatment after this one, but I am still getting a little freaked out about it. Like Paxton said about milestones, I am trying not to look to much farther ahead past my next milestone Wednesday (as I will still have 12 weeks of T to endure after teh AC), because it all gets me so far down in the dumper.

For me anti emetics, I take Zofran, compezine (if I need it), but I only get Emend for two days past Chemo ... is this the norm for all of you? Day 3 is so crappy that I kind of wish that I could have Emend one more day ...

I WILL BE UPDATING THE NEW JAN. CHEMO. SISTERS LIST THIS AFTERNOON! :-)

pagowens · February 2010

11tyBillion - I get only 2 days Emend as well. When I pick up my Emend prescription from CVS it comes in a two-pack - in other words packaged by the manufacturer as only two pills in one of those pop out type packaging. It reminds me of the 5-day Zithromax packaging. So, I'm believing that the usual dose is intravenous on day 1 (chemo day), then a 2-day pill. I also was thinking - maybe my stomach wouldn't be so queezy if I just got one or two more Emends. But, I don't think they do it - although you can ask you onc that question.

georgiabirdgirl · February 2010

11tybillion- I know what you mean about dreaming of life AFTER cancer. I keep thinking about plans I'd like to make and when I will finally feel comfortable making them. In the meantime, it's very short term goals I'm working on. Getting through this day, going to the store, getting my kids in bed, etc. I am on Emend also and mine is a 3 pack. I take one at chemo, then I follow up with two more on days 2 and 3. I also take steroids by iv on day 1, then by mouth days 2, 3, and 4. I find that coming off the steroids is what causes me to have the worst symptoms. But, it doesn't seem to last too long. I am VERY excited for you about getting through #3. You are so close to no more AC. I have a charm bracelet that my husband has added to after each round of chemo. I love it, becuase it's a nice little surprise to open. Plus it's a permanent reminder of all that we're going through. Not that the scars aren't permanent enough, but the bracelet is much prettier to look at.

As for the body issues. I am in total denial about all that right now. My lumpectomy looks much worse now that the swelling is down and i totally look mutilated there. But, I guess my brain can only function on one crisis at a time, and the current crisis is the hair loss. It's getting easier by the minute. One of the things I hope to learn from all of this is how to empower myself to find my inner strength and beauty. I know it sounds hokey and cliche, and it get's me peeved that I even have to sometimes, but if I can come away with that kind of spirit, then I will have made the most of it in the end. Maybe I can even pass some of those lessons on to my son and my daughter.

Anyway, I'm a long way off from the looking back part of this, so instead it's head down and one foot in front of the other. Trying to "Keep Calm and Carry On".

11tyBillion · February 2010

Georgiabird -- you hit the nail on the head! Thank you so much for giving me some very wonderful words to focus on!

"learning how to empower myself to find my inner strength and beauty." THAT is EXACTLY what I need to focus on! I needed a new mental matra to add to my arsenal of physical healing mantras.

thank you!

Thank you guys also for letting me know that I am not the only one who gets the Emend 2 pack, and kind of wishes that they would add maybe just one more :-).

-11ty

mom2Bnegativex3 · February 2010

Does anyone notice that on our "off" weeks (non chemo week) you get very agitated? Like worse then PMS?

nkrun... I have saw your commercial many times, Everytime I do it lets me know I am not alone. It is hard when family memebers try to help and they don't know what to say but it is so nice to come to this place and have one totally understand you and you can say your true feelings. Thanks again ladies!

gramoflexus · February 2010

Hi to all you beautiful women , we need to remind ourselves of that each and every day , somedays are harder than others . Just remember life is not measured by the breaths we take but the moments that take our breath away . Could be small things like newly fallen snow a good movie the giggle of a little one Oh the smell of that freshly baked bread. I choice to have a mastectomy (lft breast ) I find comfort in the fact at least all the cancer is gone from that area . so now I call my site the Badge of Courage. Wed will be my 3rd Chemo treatment yippee one more of AC then on to Taxol . As for the hair thing with me it has been a strange experience . Emotionally I was prepared .In fact I took a shower this morning and said oh god now my hair haha forgetting I had none . It use to take me about 30 minutes to do my hair . Now pop on scarf or my sazzy wig and off I go . I laugh because I get so many compliments on my "new Hair cut" makes me wonder what they thought of my real hair . Anyway people are funny

Pagowens you mentioned taking Emend what is that used for ?

Take care

Fondly Linda

paxton · February 2010

I live in a really small town and I just have to laugh at what I saw in the paper this past week. My friend went in with me and she cut off a foot of her hair to donate to Locks of Love. The beautician though it would make a good story for the little local paper so she called over the guy from the paper. They took our picture, he asked me some questions and now I see the article in the paper. It says something to the effect that I'm unphased about the odds against me and am fighting like a true boxer. I can't stop laughing. Part of me feels like I should be offended, but I really just think its ridiculous. Its a pet peeve of mine to compare what we're going through to a hand of cards (or boxing match). Like when people say I've played the hand that was dealt me with such courage. Blah Blah Blah.

Anyway, so far today has been better than yesterday. Oh, I was so exhausted I could barely stand up yesterday and talk about about emotional. I don't know what's up with that, but I thought maybe it was from that 3 day cocktail, Aloxi, wearing off. I took a Kytril this morning and feel so much better.

Just-Sher · February 2010

You are so right about taking each day! I really try hard to stay positive about this whole journey. I have also decided to make my journey VERY PUBLIC! I post on www.caringbridge.org/visit/shernoot I found that it is way easier to post on CB and let people know what is going on. I can't deal well with the whispers behind my back, "oh, what do you think is wrong with her... oh do you think that is a wig... or she looks so thin... she looks tired... etc etc etc." So you know what, I just put it all out there... Hey guess what I have breast cancer...hey guess what I had a bilateral mastectomy with recon... hey guess what now I'm BALD!

My best friend was DX'd during her baseline mammo at age 40,in Oct 09 with DCIS - she underwent a lump with rads. I went for my mammo 7 days after her lumpectomy. I was DX'd at age 46, just 15 days after her surgery (also 10/09). So I had someone to go through parts of this journey with. I think we were there to pull each other out of the bad times. I don't want to say that I am putting my head in the sand. Damn I have breast cancer, but I don't feel that it gives me the right to be b--tchy about it. No one around me caused it - and heck I need their help and support to get through this.

Another friend, also DX'd with DCIS, but long story short ended up with a preventative bilat mast with recon. She said that it takes a village to get a woman through breast cancer, I truly believe that! I am so thankful that I have that village around me!

Sorry, just need to vent today!

Just-Sher

11tyBillion · February 2010

So I go a week without being on here, and now I cannot get off the computer!

While I was trying to catch up on all of the posts put up in this thread, I rememebr coming across something from one of you, wondering about things that we can do (healthwise, and with eating) that would be good for our bodies during and after this whole chemo thing.

I wanted to let you know that there is a pinned thread on the Triple NEgative board titled:

Pinned Thread About How to Lower Recurrence after Chemo

There is a LOT of shared info in there that I think that we can use now (during chemo) and after. I know that not all of us have TN cancer, but you know what, cancer is cancer, and it ALL sucks. And the same health tips that work well for TN cancer would benefit ANYONE fighting this scouage.

We all can beat this thing together! We have so much information to share here on these boards! Go take a look. I have a long list that I made from that thread that if I cannot do it now (like take certain anti-oxidants) you can bet that once I am done with chemo, they are going to be a part of my daily routine for the rest of my life!

PS - if you friended me on Facebook, please PM me with your name, because lately I have had a few folks pop up, and I have not friended them because I do not know if I know them or not. :-)

-11tyB

wren22 · February 2010

I am five days past tx #2 and feeling so low. I am not sick--thank goodness I have absolutely no nausea at all. But I too have noticed feeling very agitated, depressed (even though I am taking Effexor) and my family drives me crazy! It's like having PMS forever! Today I didn't go to work, but just laid around in my pj's all day--the house looks like crap and I just don't care. Oh well, I guess we will all have days like this. I am at least rejoicing that January is over and I am halfway through my chemo!

pagowens · February 2010

Gramoflexus,

Emend is used to prevent nausea and vomiting caused by chemo. It's a preventative rather than something you take after the nausea starts. My onc gives it to me as the very first IV medicine on chemo day. Then I have a prescription for two pills - one day 2 and one day 3. It worked great for me - I only had what I would describe as a queezy stomach for the first week. For more information, see the manufacturer's official website. http://www.emend.com/aprepitant/emend/consumer/index.jsp

I hope this helps explain it.

Wren and others,

Some of the symptoms you guys are describing remind me of my induced menopause when I was preparing to have a hysterectomy in 1993 at age 41. That induced menopause was ten times worse than the actual menopause I went through later starting at 51. The depression, mood swings, the headaches, the crashing waves of temperature swings, etc......it was NOT enjoyable and I had to go through 3 months of injections to induce menopause so that I could have my uterus removed. I know that for you pre-menapausers, the chemo also induces menopause-like symptoms. I'm not having those types of symptoms because I got hardly any of the harmones left (post-menapausal). Geez, I never thought that being post-menopausal was an advantage but I can see that it definitely is for bc chemo symptoms. I'm so sorry.

Pat

Issymom · February 2010

Wow lots of good posts.

Just-Sher - I am like you. I chose to be very open and public about my Breast Cancer. At first, I wanted to document what I was going through and my diagnosis so that no one in my family would be in the dark about our family history like I was prior to Nov. 5th. The feedback from my family and friends has been tremendous and their comments in the guestbook really mean a lot to me but I don't have to spend hours on the phone answering the same questions. My site is www.caringbridge.org/visit/lorrieschleg.

I am having a bad week. Still feeling a little "yucky" from my 2nd AC last Tuesday. Nothing really bad but today is day 7 so it is really wearing on me. I am getting waves of warm/hot flashes (chemopause?) but also some queazy stomach and intestinal difficulties so I don't know what is going on. I also made the mistake of looking at myself in the mirror before my shower a couple of days ago. It is not a pretty sight. Bald head, no breasts, no hair elsewhere, 30 pound overweight, etc...! It is really hard to deal with right now. Thank goodness for wigs, hats, and makeup. This is so hard.

youngmomof3 · February 2010

Lucky me woke up yesterday morning and looked like a 12 yr old with really bad acne. Must have missed this as one of the bonuses to taxotere. Whoo hoo! I swear my face just looks so different right now. Not sure if it is swollen from the breakout or what but I am not happy. And no amount of make-up seems to be doing the trick. i have been trying so hard to use gentle cleaning stuff on my face b/c i was worried about it drying out from the chemo and then wham, hello pimples. This sucks! Anyone experience the same thing or have any tips on how to make it go away asap?

Went to work today after what was a pretty uneventful weekend post taxotere. just a little tired and run down yesterday afternoon. Today started off good so i thought let's give work a try and I did well until about midday when I started to get tired but hung in there. Also a little worried about stomach issues so i was nervous to be too far from the bathroom but overall not too bad of a day. Am feeling completely exhausted right now. I have also been a little on edge as some of you had already mentioned). Last night after putting the baby to bed I played games with the boys but was not in a good mood and was kind of short with them. Felt VERY guilty and my 5 yr old was sad when i put him to bed. i apologized for being cranky; feel like I will always be apologizing for something these days. So pissed at myself for letting my exhaustion/frustration/whatever it was get the better of me and effect the kids. right now i am kind of wishing i could stay home and hide in bed all day tomorrow. I know it won't be in my best mental interest but it would be nice to hide from the world(and all of the responsibilities) for a few hours.

Paddlegirl: so sorry to hear about all the crap you had to deal with. that is just terrible! I am having port issues right now and am worried that they will have to back in and fix something but what you went through is 10x worse. feel better soon.

Glad to see so much discussion on the Neulasta shot. my onc will have me take it after my next full round(didn't do it after #1 and #1(part 2) b/c they said my wbc should be okay with just one chemo med at a time but next time it is a definite. dreading it but prefer that to the alternative. Went to the mall yesterday with my DH and we were in the elevator(so didn't think about that ahead of time) and all of a sudden i looked around at all of the people(aka germs spreaders) and started to panic. couldn't wait to get off the elevator and swear i didn't take 1 breath while i was in there. I completly forgot that i had to watch my immune system. what the hell is wrong with me?did i forget i had cancer? one can dream can't she?

11tybillion: good luck with the wig shopping and thx for keeping things updated on here.

paxton: loved your courage statement, blah,blah,blah! i am with you. although it is good to hear that i seem to be handling things well there are times when i don't want to/feel like handling things well. does that mean i am doing bad or just dealing as any person would?

I have also started a carepage to keep family and friends updated and really enjoy doing this b/c i feel i get to be myself in my writing. love the feedback that i get(positives and laughs) and i think that helps me to deal with some of this stuff too. i feel that even though this is my journey that there are so many people who are a part of it and want to be a part of it and this is one way to support each other. I'm trying to make the best out of this situation and find the gifts that are a result of this whole long journey. Just trying to keep moving forward one moment at a time and if I slide backwards it is okay because the next new moment is right around the corner.

mslrg · February 2010

I stayed in bed all day until I had to get up and go to my 4th grader's award assembly. I was just dragging, but I pulled myself together, took a bath, put on a full face of make-up, and the friggin wig! And did I ever look like one hot chick when I got through fixing myself up! I got lots of compliments about my hair from school staff and other parents, even though inside, I just wanted to crawl back in bed.I took my kids for a walk in the park after school. Again, I wanted my bed, but I want my kids to see me doing normal things and not worrying about a sick mom laying in bed all day. I am on day 4 of X2 T/C and doing quite well. My only complaint is night sweats and my inability to sleep well. Yes, I too believe that chemopause is taking hold and I'm NOT happy about that!

KAJDerby · February 2010

Emend - I take one 125 mg tab the morning of chemo and then 1 80 mg tab on days 2 and 3.

Neulesta - my doctor here does not give it ahead of time. Also wait and see. Now I'm getting nervous after reading paddlegirl's horrible experience.

Today was day 14 for me. My hair started coming out yesterday in handfuls. Today worse. Taught this morning then had lunch with a young mother in our church. Her baby was born last April 1st and we almost lost her. Today that sweet little baby was all over the place and it was wonderful to see young life!!! Anyway, after lunch my hubby cut my hair. I put on Handels music for fireworks!!! and he buzzed away. My scarf arrived from "Good Wishes" this morning, so I put it on as soon as my hair was gone. What a wonderful gift that was and I loved the note that came with it!

The chemopause reminds me so much of menopause!!!! Actually, for me the chemopause is worse!!!

Paxton, youngmomof3, and the rest of you with young children - I think of you everyday and pray that you are making it through.

Hang in there everyone!

VegasDiva · February 2010

For all the American Idol fans out there - the son of one of my dearest friends is part of an acapella singing group from Ithaca College. Ryan Seacrest Productions asked Ithacappella to do a version of 'Pants On The Ground' from American Idol, so they took some time out of their tour in San Diego, CA to arrange and record this little ditty for them! My friend's son is Chris and he is all the way to the right in his JETS Jersey! This is the video they will be showing on American Idol tomorrow night (Wed Feb 3).

http://www.youtube.com/watch?v=lM7hwTDM_FE&aia=true

georgiabirdgirl · February 2010

vegasdiva- what a bunch of talented guys. you must be so proud. I don't watch idol, but I'll tivo it tomorrow to see the broadcast. thanks for sharing.

graceokinawa- i'm wearing my franceluxe scarf today too. it's so beautiful and light. i'm probably going to order a couple more today to see me through the warmer months.

my stubble is starting to fall out of my head now which is nice and messy and i'm starting to feel the wrath of the ac kick in. So far it's been mild, but I recognize this feeling from last time. It's probably going to be a stay in pjs in bed day tomorrow for me. does anyone else have nerve pain in their arms/shoulders? i had it last time for 4-5 days and it's started up again. I also am having trouble sleeping this time. I'm going to try to get through it, but if it keeps up I might have to get some Ambien.

youngmomof3- so sorry about the acne. i caught glimpse of myself in the mirror this morning while I was showering and the whole "chernobyled" description came to mind. i feel your pain about the mommy guilt too. i have to keep explaining why i don't want to go outside to play basketball with my son. my daughter likes to climb into bed and read books with me. i'm trying to get my son to do the same. hopefully, i'll bounce back by this weekend and i'll get to play some more.

mom2Bnegativex3 · February 2010

georgiabirdgirl, I constantly have shoulder pain. I try to take a hot bath every night and it never goes away. I hope it gets better for you.

How super cool, VegasDiva! I love reconigizing people on TV. How great for them.

Wow Grace that is truely a blessing. It makes you want to live and fight this even stronger seeing children go through any battle. I can't wait until I can find something to give back after this ordeal. The people at Good Wishes are very special. I love my note too. Seeing everyone that signed it is great.

Great job Mslrg, Sometimes it is hard to do it but something good always comes out of it. Last night I went to my daughters game and one of her friends that knew turned around and started to take my picture with her cell phone. The poor thing couldnt stop starring. So she got up, (to call her mom) and then came over to me and told me hi and that she liked my hair. I asked her if she got a good picture and she said yeah her mom wanted it. lol As I sat down when I first got there I could see that my daughter had told all of the cheerleaders that I was there and that I was wearing a wig. Some of them standing close to her started to wave really big. I guess one little girl started to cry why kailey told her why I was wearing it. She is one of the girls I coached last year in softaball. We came home aftr the game and I helped her with her home work, ( I WAS a whiz at math) I did a few problems and then just couldnt' think anymore. I try to keep it so normal for them. but some times it is hard. You do wnt to crawl in bed and sleep this SH*T away. but it doesn't go away. I went to take a bath because I was feeling achey and she came in and said she wanted to talk. Not about Cancer Not that I wore a wig and was embarrassing but about mom and daughter stuff. she did some new cheers for me. A few cheerleading jumps. I wanted so bad to turn the jet on the bath but I just sat there and listend to her for about 30 mins.

My youngest daughter came home from school today and said that she told he friends and lunch that her mom had breast cancer. she told me that that laughed at her and that made her cry. As hard as that was to hear I told her that it was alright for her to cry. And it was alright that they laughed because they are just young girls and I hopeI am going through this so they or their moms don't have to. I jsut hope I can give something back at the end of this.

Youngmom of 3 I hope God gives you the strength to get through this. Sometimes I don't know who to feel sorry for us or our children,. You sound like a vvery loving mom and your specail little babies are very lucky!

mslrg · February 2010

momofb2negative: I am so sorry your daughter's "friends" responded in the way they did about the news of your cancer. It's unfortunate that this is still such an uncomfortable subject in our society that kids don't know how to respond appropriately and compassionately. Your story made ME cry! What is so scary is that given today's statistics of breast cancer DX, it's very likely that one or some of them will also have a mother, loved-one, or themselves with the same DX one day. How will they cope when that time comes? So sad!

Today, I am in a Battle of the Wills:my will to keep pushing through, and chemo's will to knock me flat on my back! We are currently in a tie WHile I am not flat on my back, I am still in bed with the laptop, it's after 11:00, and I can't do anything, except watch a little TV, cruise the Net, or sleep. I feel like I have lead-laced mud, rather than blood trying to move through my veins, feel weak, and I have a metallic taste inmy mouth. Even my sweat smells metallic! Does that sound weird?

I am happy to announce that since I sent out my initial mailing to family and friends about sponsoring me for my 3-day walk, I have raised $111.00 so far! We will get ther, Ladies!

faithfulc · February 2010

Question on Claritin for the Neulasta shots: should you choose the D (for decongestion) or the one without D? Or does it really matter?

I have seasonal allergy (every spring) and Benydral works for me. OTC Claritin (which is supposed to last 24 hours) never worked for me. I wonder if this means it won't help in the case of Neulasta.

mslrg · February 2010

Regarding Emend:I take a dose of it in my IV before benedryl and other chemo drugs. Then I take one pill on days 2 and 3. The cost is astronomical and my insurance wouldn't cover it at first. The pills are $130.00 each at my pharmacy, or $260.00 for a 2-pill pack, but well worth the cost because I've been spared all nausea! I was able to procure a "voucher" to pay it the first time, and got an appeal the second time, so tha tmy insurance covered it with me paying a $50.00 co-pay. I went to the Emend website and saw they have a patient reimbursement plan. I called the number and spoke to a rep. They will help out financially if you need it. I need it! I'm losing a lot of income behind this cancer! All you have to do is "state" your income is lower than what they think is acceptable (about $110,000 per year for a family if 4) they do't ask you to prove your income, and you share your insurance info with them. It takes 3-5 days to process. Hope this helps.

leta17 · February 2010

youngmomof3 - Clearasil cream is helping my acne:) Crazy isn't it

Neulasta - When the bone pain hit, I posted that I wasn't going to do it again, but it only last ~36 hours and I still went to work because I mostly sit at a desk and I wasn't in pain just sitting it was movement up and down steps that was painful but not imposible. My counts at both check points have been great and I feel like myself...SO I am going to have it again...I may not have been as fortunate if I didn't have it. The nurses also said that the pain is usually concentrated after the first shot, that the others have minimal pain...I will find out:)

I am back to the drawing board with wigs....going into NY tomorrow...no hair loss yet at day 12 but hair looks and feels terrible...so I think it is only a matter of days before I start shedding:(

Leta

friscosmom · February 2010

faithfulc - the regular 24 hour Claritin, not the "D".

Anonymous · February 2010

Mslrg-thanks for the emend tip. My 3 pack was 360 buckaroos with insurance. I'm sure well worth the price.. but still. I just downloaded the form and will bring to my ONC.

Not only is cancer a full time job but it is also expensive. Yep Cancer sucks!

I'm feeling really left out of the neulasta discussion... my doctor says I do not need the neulasta shot because I'm on the 3 week A/C regimen. Apparently infection is less of a risk when the treatments are every 3 weeks????

Can anyone confirm this rational or is my doc blowing smoke?

momofb2negative- I'm sorry to hear about the awful reaction from your DH schoolmate. Don't worry I'm sure when she is an adult and someone asks "what was your most embarassing moment" she will have this to fall back on.

Nancy

mslrg · February 2010

Nkrun--don't know what to sayre: Neulasta. With all of our DXs, cocktails, and oncs' personal philopsophies, it's difficult to tell. But I can share my experience. I had my first round of T/C on Jan 8th. A week later, I had blood drawn and my blood levels, red and white, had plummeted, so I was alled in for the Neulasta shot. I had my second round of T/C last Friday, my blood levels were back up by then, but I was told to go in on Saturday for the shot--no blood tests. Go figure?

nursemary66 · February 2010

Today is day8 after 2nd T/C. I'm giving myself Neupogen shots to keep my WBC up. Feel crappy. Was supposed to go to work but just hurt too bad. Shoulders.pelvic bones. My stomach is slightly upset and I am totally tired of trying to eat with the horrid taste in my mouth. Nothing seems to help this time. So I drink water. then make myself eat something...boring. Had a meltdown yesterday...better today. Have my CBC drawn tomorrow...hope it is ok. 4 weeks down 8 to go. Maryane

Just-Sher · February 2010

Nkrun- I too am on an every three week treatment. My number tanked super bad - to the point my chemo nurse basically told me that she would NOT go shopping or out in public at all. If I do I cannot touch my face, eyes, nose mouth. Have to be hype-vigilent about hand washing and sanitzer. Basically, if I were to catch anything at all I would land in the hospital! Great huh?! I live in MN so winters you actually go inside, shopping malls etc - to get out of the house! I was under house arrest for 2 weeks from my first chemo treatment. They told me that if my numbers didn't go back up I wouldn't be able to receive my chemo today. Well luckily my numbers were back up (although falsely, as I was on my thrid dose of steriods - the roids make your numbers go up along with your superpowers!)

Anyway - long story short - my chemo nurse really pushed the Neulasta shot with my Onco Doc. I talked to him today, he said that school of thought is this... if we were in Europe we would nobe concerned as I did not get an infection. Therefore, no infection, no need to worry about my numbers. I looked at him and said, well of course I didn't get infected I didn't leave the house, except to come and see you twice in two weeks! He said - well no infection - I then told him that I am a stay at home mom, that typically doesn't stay home much! I then told him that the house arrest is way worse for an extrovert! Well, guess what, he finally agreed that since we are NOT in Europe, I will be getting the shot tomorrow!

Hey ladies - looks like I am off house arrest! Yippee! I think this is a really good choice as he wants me to be working and volunteer and such, anything to keep my mind off the cancer!

Oh, another thing he told me... which should work for everyone... He said even though you are on steriods you should lay low, on your chemo day, and days 2 and 3 post chemo. He said that his patients that follow that, tend to have much better days on day 4 and 5 post chemo. Gonna give it a try this time.

Hugs to ya!

Sher

friscosmom · February 2010

nkrun - on the Neulasta I guess all oncologists have their own ideas on that. I'm on FEC every three weeks and my oncologist gives Neulasta and doesn't wait until your counts are low. I'm glad he does it that way, my white counts were low but not dangerous low at my one week follow up and that's WITH getting the Neulasta two days after my FEC; don't want to know what they would have been without it. I live on a small farm with horses, chickens, dogs and cats along with working outside the home so I would probably be at high risk of getting sick if I didn't have that boost after each treatment.

Just-Sher - interesting information on the laying low the first few days. I did but it really wasn't by choice I simply didn't have the energy to do otherwise but I also don't get steroids like many of you do. I get steroids in my IV prior to my meds but I am not sent home with any for after. I also don't take Emend, I get something else for nausea, it seems to work and it's not super expensive; hope it keeps working for me. My 2nd FEC is this Thursday; sure hoping this one goes as well as the first!

cammy2 · February 2010

NKRUN - I am also on AC every 3 weeks (X4) then 12 weekly Taxol. I am going in for treatment #2 on Friday. My Onc doesn't give Neulasta for the 3 week treatment either. He said that the body naturally builds back up on the 3rd week - so that I won't need a Neulasta- unless a blood test shows the WBC count is low. I am also in San Diego area (North in Escondido) and I have Kaiser, get my chemo in San Marcos. Saw you on TV tonight...our local celeb!

HAIR TALK My scalp was really tender&bruised feeling on day 14 - started falling out on day 15 and 16 by the handful. My 12 year old son did the Jack in the Box bowl cut first for hoots, then my husband shaved it. Right when he started to shave me, my son started crying and held my hand which of course made me cry. He said it would be okay and that it would grow back and that I would still be pretty TO him. What a sweetheart.. Slept with a polar fleece cap on last night - shaved heads are cold! Got a wig - but it feels like so much hair. THink I will be doing more scarves and hats for everyday.

Anyone Starting Chemo Jan. 2010?

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