March 2010 Chemo Start

lovemygarden · March 2010

groundhog and EZH: Yes, sad but true Neulasta is ridiculously expensive. Not nearly as much as Herceptin but still....

Do a Google for COST OF NEULASTA SHOT and you'll see a ton of links (a couple of which are threads from this site, btw). It's mind-boggling.

Neupogen is a cheaper alternative, it seems to run less than $1000 per shot. From what I have seen, the determining factor is your chemo dose schedule. If you're not getting weekly chemo, the doctors use Neulasta because it is stronger (supposedly a dose of Neulasta is 10x stronger than one of Neupogen) and thus lasts longer. But for a weekly regimen it seems that Neupogen is an option. At least I hope so if it turns out that my blood counts drop so low that I would need to get something.

Good luck today, Ann Marie!!

staceyt · March 2010

Good Morning All,

Just checking in real quick. Doing ok still dizzy and have this damn headache but it could be worse right. Glad to hear everyone is doing well with their first treatments and sounds like the SE are minimal. Bless you all you are in my thoughts and prayers daily.

Stacey

frosty1 · March 2010

EZH - I had 'sympathy' nauseau and fatigue the day before I started chemo. Too weird. I did find out that I am very smell sensitive, so the hospital gave me these scented 'candles.' They don't have a wick, but you hold them in your hands to warm them and then smell them. It helped as they were washing the port area and injecting different things.

After my steriod perky day yesterday, I'm foggy and drowsy today. Still no nausea, thank goodness. I ate a ton yesterday. Got to back off today.

I did get my wig yesterday. If felt good -- the 3rd one I tried on just felt right -- looked like me and my original haircut.

Day by day, ladies, one step at a time. The anticipation and not knowing is the absolute worst part (just like surgery was). We can do this!!!!

lovemygarden · March 2010

frosty, another thing you can do is to suck on a fruit-flavored hard candy while getting anything that produces a bad smell or taste. Before I got my first port flush last week, I read that the Heparin can produce a horrible taste and/or smell and one way to counteract it is to pop a hard candy into your mouth just before they do it. I found some nice ones at Whole Foods (no high fructose corn syrup! :-) ) in various flavors like Cherry, Honey Lemon, Honey, etc. So I tried a cherry one and it worked like a charm; all I could taste or smell was the cherry.

I'm super smell-sensitive under normal circumstances so it should be really interesting once I'm on chemo! I can't even have any kind of scented product (even an unlighted candle) in the house, can't use any product that has a fragrance, have to use fragrance-free laundry detergent and so forth.

badger · March 2010

Hey all, hope this week went well for everyone and that you're all OK - EZH, stacy, frosty & AnneMarie. I stopped by the clinic on my way home from work today and had a quick tour.

There's a communal tx area called the "party room" with a TV, five or six recliners, hard candy & chips, a refrigerator stocked with beverages, and a nurses desk. There are also five or six individual "rooms" (not really private rooms with doors but partitioned areas open at the front so the nurses can keep an eye out) each with a TV, recliner and visitor's chair. For my first tx I'll be in one of the partitioned rooms but later I get to go to the party room.

Someone I know who's had ca & chemo, said don't eat the snacks at the clinic, they'll taste like the smell of chemo. I didn't notice any weird smell today but will avoid the candy & chips and bring my sherpa fully loaded Tuesday but minus things to drink. :-)

edited to add treatment is TC x 6 every three weeks

Rohm · March 2010

I'm starting chemo (TCH every third week) on March 8th. I've been lurking around these forums ever since my diagnosis and they've been an excellent source of info.

badger · March 2010

Rohm - welcome, looks like it's sarikasd, you & me for next week so far. {{hugs}}

EZH · March 2010

Groundhog: dumb question: what is "sherpa"? I've seen that word before around here but I can;t get the context?

Rohm: as they say "welcome to the club that nobody wants to join"...we are forming quite a lovely group of ladies!

Frosty1: sounds like your day #1 went okay. Yeah, weird about the sympathy/anticipatory nausea and fatigue! Your feeling okay now, I hope? Are you feeling at all jittery or spacey-like? I felt that way all day #2 and day #3. Hopeful that its the coming off of the steroids and not the way its going to be, not the "new normal"!

During my treatment, to pass the time, I did sit in the "party room", thought that terminology, Groundhog, was very funny! No one offered me snacks or anything fancy like that! : ) I brought my computer and my phone and sort of sucked on candies and googled/texted my way through. Didn't notice any smells, actually I didn;t even notice when the nurse switched the bags. Distraction will get us through!

badger · March 2010

EZH - sherpas are Tibetans who help climbers ascend Mt. Everest, frosty used the term to joke about her DH lugging her large chemo bag and I jumped on the metaphoric bandwagon lol.

EZH · March 2010

Thanks groundhog, i get it now..just a little slow on the uptake!

I'm off on my ambien, ahhhh some sleep! See you all tomorrow!

Julia257 · March 2010

Hello Ladies, I too will start the chemo onslaught - 3/16, 12 weeks - Taxotere and Cytoxan. I'm trying very hard to put the fear and anxiety aside and I have to say the amazing support and wealth of knowledge in this website helps a great deal. This is my second go around with this bc business. The first time was 18 years ago - a .5 cm, DCIS - lumpectomy, radiation. This time it's a 3 cm mucinous (the rare one), same breast, mastectomy, no nodes left to analyze, PET Scan scheduled for Mon. 3/8.

I'm so sorry that you all have to go through this, it truly is a revolting development! Together we will be strong and get through this thing. Hope to share, support, do whatever I can to help in any way. All my very best wishes for your good health. Julia

lovemygarden · March 2010

groundhog, Isn't it weird how treatment centers can be set up so differently! My oncologist is exactly the opposite. There is a "group area" with four la-z-boy type chairs which is right next to the nurse's station; and then along the walls surrounding that area there are 6 or 7 rooms that are open to the common area except for a thin curtain that can be pulled closed when needed.

My preference is to be in one of the separate rooms because I don't like being in a multi-person setting if I'm stressed, and also I thought the noise level from the people and visitors talking was really annoying. I want to either read or watch something on my portable DVD player and I couldn't concentrate on either if there's background noise. But when I asked to be in the separate room I was told that isn't allowed during your first (and possibly second) infusion because I have to be within "eyeshot" of the nurse in case of a reaction. They have 3 oncology nurses but that's not enough to allow someone to sit with me in a separate room to monitor me "just in case", since there are other people getting treatment at the same time. So even though I don't want to be in the 'party room' area I'll have to put up with it until they're confident that nothing nasty will happen to me from the tx. Drat!

My son will be driving me to the tx and then picking me up when I'm done but he can't stay with me because he has to go back to work in the interim (4 hour treatment time for the first 12, I'm told). Also, it's a good half hour's drive, assuming no traffic, from where I live to their office. And I don't have anyone else who could take a 5-hour+ chunk out of their day every week to transport and stay with me; they all either work or have other commitments on that day of the week. Ah, the logistics!! ;-)

alison34 · March 2010

hi all

i am a march chemo girl too

start my chemo 17th march

its the unknown for me, i wish i had already started now cos i just hate this feeling of the unknown.

good luck to you all xxxxxxx

frosty1 · March 2010

Welcome Rohm, Julia257, and alison34. I like your term, Alison: March Chemo Girls. And to start on St Patrick's Day! Those of us that started this week can all chime in and say the waiting is the absolute worst part of this whole business. Day 4 after #1 for me and I'm still waiting ... I shouldn't say waiting, but it feels like it. When will the bad SEs (side effects) kick in? I'm hearing from some people that it is day 6-10 that are the worst and others say it isn't until after the 2nd treatment. Aggghhh.

My space doesn't have a party room, just individual rooms. My first treatment was right across from the nurses station. It was nice to have my own space. Especially with my bags of stuff! I didn't notice any smell from chemo ... I know some people say they can smell it on themselves and their stuff. Still drinking lots of water. Felt woozy and heavy yesterday. Doing okay today. Off anti-nauseau -- well I took 1 this morning because I couldn't decide if I was feeling queezy or not.

Keep breathing! We can make it through!

lovemygarden · March 2010

Alison34, I am starting on March 17th as well! I just looked up at the "Schedule Sticky" and noticed that I'm listed as the 19th.. nope, it's definitely the 17th start date for me. Can that be edited? And in addition to the 12 consecutive weeks of TH, I will then be getting Herceptin every 3 weeks for the next 9 months.

I have a penpal in the UK (Reading) and in her last letter she mentioned that people who have yew hedges can put the clippings out for collection to be processed into the taxane chemo drugs. I never knew that! I'm getting Taxol so am in that category. I really like the notion that perhaps somewhere in all that chemical brew I'll be getting, there might just be a little tiny bit of an English garden! :-) :-)

marigunn · March 2010

Me, too, for March 8. Had PICC line inserted Friday. Just want to get started and see what SE's I will have after the first tx. Good luck, everyone!

EZH · March 2010

Welcome to all new March chemo friends! The waiting, the waiting! The waiting for the first surgery was hard, the waiting for the results and then the waiting for the next surgery. And then the waiting to make the chemo decision (need it? don't need it? do the research and get input and figure it out)and then the wait to start the actual chemo and NOW, we wait for the s/e's. We need to be strong and we need to be patient. We will all do this, we will do it well, one day at a time.

Coming off of the steroids gave me lots of jittery energy over the past few days. I've cleaned out cabinets, closets, half the basement and I'm dumping all the things I never liked to begin with and boy does this feel good! Try it! When the energy runs out, I'll crash and sleep and that'll be good too!

Best of luck to all our new starters this week,,,,will be thinking of you and sending good thoughts. Oh, and bring candies to you chemo day#1 and ice to chew!

alison34 · March 2010

its going to be along road and the ride is going to seem forever but i am just wanting to get on this road now and get it done

the main issue for me is the loss of my hair i could cry just thinking about having to wear a wig for months on end

i mean they chop your boob of and make you feel less of a women and then want your bloody hair too lol how cruel is that

anyway good luck to you all going through this horrible thing called chemo and i wish to hear from you all at the end of the road and i know for sure i will xxxxxxx

badger · March 2010

Hey all, just a quick hello, thinking of you and sending good thoughts. Best wishes for those who had first tx last week and special prayers for those who will have first tx next week. {{hugs}}

staceyt · March 2010

Hello To All The March Gal Pals,

Welcome Rohm, Alison Julia, may you find comfort, help and friendship.

I've have a rough few days ladies, nothing tastes right, dizzy, no nausea though, and this d*#% headache. I have to go to the hospital Tuesday to have my Pic line cleaned will see why I'm having such headaches. Other than that I'm okay, Groundhog sounds like a California Spa - that is fantastic great surroundings. I have to give my DH all the credit in the world, he has not left my side, I guess when they (husbands/partners) don't know what to do or say the only thing is to be there. You all sound good and are handling things that's great. Best wishes and hugs and I'm holding you all in my prayers Sarikasad, Rohm & Groundhog x-hugs for you guys, good luck this week.

sarikasd · March 2010

Hope you all ladies are doing well. Stacey, I hope they give you something for the headache. I have heard about chemo headache from another friend so it looks like this is something we should be asking our Onc about. EZH, it was funny the way you went about cleaning! I hope I am able to do well energy wise. I have a very energetic 5 1/2 yrs old boy and I hope to continue taking care of him. Does anyone else have young kids?

Rohm, Groundhog, Marigunn good luck to you for the round #1.

Julia257 · March 2010

Thank you Frosty1 and Stacyt for welcoming me, I appreciate it very much. Sarikasd, it must be especially difficult on top of everything else to care for a youngster, my best wishes to you and your family. Hope you all have a very easy-to-take and an extremely successful week and every week until you are in the best of good health. Only good news from now on!!!!!

sandiek9 · March 2010

I start chemo on March 17 - not the usual cocktail for St. Paddy's Day! I had my port put in last Thursday and had a horrible reaction to anesthesia. It's never happened before; I was given a drug that causes myalgia in 30% of people. Every joint and muscle from the top of my head to my knees was affected. Totally bedridden, couldn't lift my head off the pillow. Very bad experience, compounded by the cavalier attitude of the anesthesiologists. It's getting better now, slowly, but I lost 2 nights of sleep and am exhausted and aching. I haven't even had a chance to look at my port or worry about the upcoming chemo! Has anyone else had this?

jojov · March 2010

Hi all. Can I chime in here?
I am 45 and was diagnosed with TNBC just after a lumpectomy and lymph dissection in late January.
I had my first chemo treatment on March 1. The plan is 4 rounds of Adriamycin/Cytoxan and 4 rounds of Taxol, every two weeks with a Nulasta shots on day two through the A/C only. - I think. Also on Emend, which I have been told is priceless. :-)

I had what I thought was a great week. Tired, sure but no significant nausea to speak of and I have been active and feeling good over all. Even did a hike on Friday but the weekend has been a bummer for me. I expected to feel my worst on Thursday (nurse told me to expect that) and to start ramping up by the weekend. Yesterday we managed to get out on the Harley for a few hours but it was also the first day that I ended up requiring a Zofran after a grocery shopping moment. - I couldn't get out of there fast enough.

In addition to the above meds, I am working with a Naturopathic Oncologist in conjunction with my Onc and have had one acupuncture treatment - going again on Tuesday.

I just feel defeated. The miserable rain doesn't help but I am just depressed and saddened that I don't have the energy I expected. I am worried about all the talk of steroids and weight gain too. Will 3/4 days of Decadron cause me to pack on the pounds?

Anyway... here's to seeing a marked improvement over the next 7 days before round 2.

I have to admit, I am starting to doubt my immortality. ;-)

Jo

hmh23 · March 2010

Start AC March 29, 4 rounds, then onto Taxol 8-12 cycles, then radiation, followed up by second mastectomy and reconstruction.

carolsue63 · March 2010

Hello ladies! I'll be starting chemo on March 19th -- TCH 6x, then Herceptin only for another 8 months (or thereabouts). I'm getting my port put in this Wednesday, and Friday I go for an echocardiogram.

I had DCIS in 1997 and opted for a bilateral mx with implant reconstruction so I'd never have to deal with it again (or so I thought). I had a 3 cm mass removed Jan 13th, but margins weren't clear, so they removed my pectoral muscle on Feb 17 and did a lat flap to reconstruct the breast mound. I had 13 axillary nodes removed and all were clear, but one of the nodes in the muscle tissue area was involved, so they're calling it 1/14. (It's a little confusing to me, but whatever.)

I'm 47 years old, married nearly 23 years, and have a wonderful 7-year-old son. I'm not looking forward to going through this, but after finding this community and learning so much from all the wonderful women who have already gone through this, I'm not nearly as afraid as I was a few weeks ago. I will be keeping all of you in my thoughts and prayers.

teemee · March 2010

Hi all,

To those of you who know me from the February thread, I saw the oncologist Friday and am starting chemo the week of 3.22. (I got a staph infection at my surgery site a few days before I was to start chemo and am just finishing up week 5 of antibiotics). I am so tired of waiting. I know we say waiting is the hardest part and I'm really feeling that. I've been waiting since my surgery on 12.16!

It's good to hear that almost everyone is doing well, with minimal SEs. Sandiek9, that sounds horrible. Are you feeling better yet? I wonder why they even use a drug that causes such an effect in 30% of people, when there are other drugs out there to knock you out.

Oh, and I'll be on TC x 4, every 3 weeks. Then rads, then tamoxifen.

Stay well everyone!

frosty1 · March 2010

Corrected dates and added our newest March Gals! Welcome ladies.

I agree on the hair ... my scalp is prickly, which means hair loss is imminent. Have my wig for my first day on my new job (3/15). Oh boy. What a way to start!

Day 5 for me. Feeling heavy, fatigued. Went from constipated Friday and most of Saturday to runny. Nauseau not so much, although I did get up at 5am to take a Zofran this morning. Just hate feeling tired and blah. I think I'll try to get out for a walk for a bit and see if that helps.

Best to all of you starting up next week ... take it easy, keep notes, and take your meds!

Cherylis · March 2010

Hello everyone!

I originally posted that my regimen was DC, and found out it's the same as TC (Taxotere and Cytoxan) I couldn't figure out why no one had the same regimen as me. Mystery solved! There appears to be a myriad of side effects, from both ends of the spectrum.

I went back to work last week to keep busy until treatments start, it was a good decision, really lifted my spirits.

Did I mention I start my treatment March 18? Thanks to everyone for posting!

EZH · March 2010

Our list of ladies is becoming so long, its' hard to keep up! It is, and I love the the words used by Julia257, a "revolting development" to find ourselves here, but surely, we are in good company! Welcome to CarolSue63, Alison, Jojov, HMH23.

Jojov: are you feeling better? You are not defeated, not even close! The grocery store moment of nausea must have sucked.... but you got yourself out of there, don't look back! I'm not sure if 3 or 4 days of Decadron is enough to cause weight gain? I hope not...I gained 1 pound this week (3 days of Decadron, Chemo #1 on 3/2, 3 days of Compazine and a Neulasta shot). My DH noticed....is that even possible to notice?

Frosty1: my head, mostly at the crown is buzzy and I have this awareness-of-the scalp-feeling (make sense?),the hair is not long for my head! Saw a few strands, more than normal, in the sink this am and on the comb this pm. Just waiting. My proverbial hat is off to you, starting a new job on any given day: tough. Starting a new job the week your hair falls out from chemo: unfathomable.

Allison: yes, the hair falling out is simply another dimension of insult to injury.

Best wishes for painless i.v. and minimal s/e's to this weeks starters: Rohm. Groundhog, Marigunn, Sarikasd. Be brave.

March 2010 Chemo Start

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