Starting Chemo, November 2013 Group

ellenkc

Thanks so much SpecialK for the Neulasta explanation. Pulls together bits and pieces of things I've read/heard/experienced. Also gives me some hope that next week won't be as bad as a couple of weeks ago. Hey, if as it seems, this works out to one week out of three being bad, I can handle that!

Ellen

SpecialK

ellenkc - I had 6 TCH, then H for the remainder of the 12 months. My SE from tx were very consistent, and I had trouble with the Big D every time I had chemo. For me, the SE the first 10 days were enough that I really did not leave the house much, other than Neulasta and CBC the week after chemo, mostly due to the Big D and fatigue/nausea. The second 10 days I felt pretty normal and ran around doing normal things. I felt the same as you - I could deal with it because I knew what to expect. I planned my life around that schedule, lol!

Veronica37

specialk -did you take anything for the big D or let it run its course, did you have severe cramping with it? Was it the same with each chemo? I think I may have ibs.

Paulette23

I curious too.....how has everyone doing after the second one was compared to first! on a different note. ...my neighbor have us some fresh from the clucker... fresh Brown eggs! 1st time I had ever had them! !! Goodness. .... they were FANTASTIC! ! the whites were SWEET compared to store eggs! !! unreal!

SpecialK

veronica - I had mild IBS due to reflux surgery in '95 prior to my BC diagnosis, so I am sort of used to this. I did let it run its course because while it was enough to keep me home, it was not enough to dehydrate me or cause any other issues, and I did not really have much cramping. It was the same with all my tx, except the last one, #6, then not as severe. The cramping you are experiencing may be from the GI distress, or it can also be from the chemo itself, as it causes soft tissue damage in the GI tract. Talk to your onc about how they want you to proceed. Also ask about using a probiotic - some will let you during chemo, others won't.

Veronica37

Thanks specialk, hopefully I will be able to manage it better next go around.

Amazonwarrior

I had a strange scalp pain last night...is the hair loss already starting on my day 7 ?

I don't have a wig yet, and getting a bit panicky.

Where did you get yours?

Web sites?

Stores?

lisa137

My oncologist is kind of a rockstar: I don't even start chemo til Monday, and just got my port yesterday, but he prescribed the numbing cream for the port plus THREE different anti-nausea drugs for me *last* week. I guess he believes in being prepared. :P

Palameda

Amazon, I've had some weird scalp pains too, but no hair loss. It's actually my "lower" hair that's really acting up right now. I've heard it's the first to go, so I suspect the follicles are beginning to die. Check out TLCdirect.com online for wigs and hats. I got a little "halo" wig from them to wear under hats. I went to a local wig shop that specializes in alopecia patients for my "real" wig. Don't need it yet, but I'm ready!

Bec65

Hi everyone,

I started chemo 10/30, but I feel like I 'm a good fit here (having spent the day reading ALL the posts!). Thank you all for being such a great support!

I'm on day 9 of cycle 2 and am generally doing okay, thanks to all the medicines. I take Emend one hour before chemo, then get Zofran and Decadron with my AC. I give myself a Neulasta shot day 2, and take Emend for days 2-3, Zofran/Decadron for days 2-4, then Zofran, Compazine and Ativan if I need them after that. So far, I haven't really needed anything after day 4, with one HUGE exception. This past Monday night I got the worst headache I've ever had in my life, and it lasted until Tuesday morning. The nurse said it was a Zofran/Decadron hangover headache, and I can take acetaminophen or Norco if it happens again. Other than that, I think my side effects have been manageable -- body aches from the Neulasta, pond scum taste in my mouth, fatigue. I have two more cycles of AC, then I start Taxol the day after Christmas. The infusion center said the first Taxol appointment will be 6+ hours...yuck!

My hair started coming out day 12 of cycle 1 (last Monday 11/11). I had it shaved to about 3/8" last Wednesday 11/13 before I went to chemo. I still have some stubble which is really sensitive, but it is almost all gone. (The shower was a mess the past few days.) My wig -- which I love! -- is actually more comfortable now that I'm almost completely bald. So, now that my mastectomy scars have healed, I can fully accessorize with my fake boobs and hair!

Thanks again to everyone here for being so fabulous!

Paulette23

Hi Pat...i heard that too...nose...girlie parts...go first. Glad to hear youre all ready...as much as you can be! Lisa....cool about your doc! doing all the right things. I wish I had differant kinds of antnausea med. Allergic....hopefully I wont need em next round. So far I "handled it" with just the phenergan...its functional. I know there are better meds out there. The cream is great! make sure you put in on in plenty of time to really numb that bad boy up!

I hope everyone had a good day!

Im trying to put together a roster of all our november buddies. If anyone is like me...trying to remember names and info is hard...especially now! I couldnt even remember my bank acct number yesterday!!lol!!

I still have about an hour and 45min till hubby comes home...want to get up and clean but dont have the strength....

Paulette23

WELCOME BEC65!! glad to have you! jump in the water...the temperature is fiiiinnnneeeee!

lorreymom

Hi everyone. Hope you are all doing well with your chemo. I haven't had a chance to read through the thread yet. I start my chemo tomorrow with my first dose of FEC. Nevous, but ok...one day at a time!!

Lissy2304

Shower was a mess today with all the hair coming out! I had already cut about 3 inches off and had it layered so it would be less to lose, but I just have a lot of hair. Getting it cut even shorter tomorrow. My scalp is sensitive in some areas now, this just started a few minutes ago. Hair down south is shedding fast. I hope my eyebrows and lashes stay! No other side effects to report. Mouth sores are gone, no pain anywhere, tons of energy. This was a great week for me, except for starting to lose my hair .

I am going in for blood work tomorrow so we'll see what they say.

How is everyone else doing?

Lissy2304

Lorreymom you will be fine! Hoping no side effects or at least minimal ones!

Paulette23 Hope you are feeling better!

Bec65 you made me laugh! "Fake boobs and fake hair" Ready to accessorize! Me too!

PatAlameda Was your scalp pain when you touch it ? Mine is sensitive to the touch right now.

Paulette23

Hubby and I sitting here watching tv & working on school. I have my lovely night dance partner by my side until this fluid bag is empty.....eikees.....I had to stop writing for a few......I got nauseous all of a sudden and tossed the few bites of food from 
in my tummy. I've been queesy quite abit lately and I made the mistake
of taking my meds and antibiotics without eating very much. It could be much worse!

HI Lorreymom! Glad to see you here! Lissy sorry about the hair...I had my 1st round on the 13th...so I'm right behind you. I have lost minimal hair as of tonight....but figure it will go fast as I already go thru phases of thinning out during lupus flairs.

..Lissy glad you mouth feels better....mines getting there! Looks like we all should be filling up the drains pretty quick...like ducks in a row!

Bec glad you feel at home...we all are still getting our sea legs!

Question are yall still doing your laundry seperate?

Pompom21

Hi All,

I had my 1st chemo; Taxotere and Cytoxin on 11/14 and thought I would be doing better. Monday I had bad bone pain with a yeast infection and Thrush along with constipation. Tuesday wasn't much better and Wednesday my period showed up along with intestinal and menstrual cramps. Yesterday fatigue set in though the cramps faded a bit. I hate to complain because after reading everyone else's posts I know I have a rather mild course of treatment ahead of me. I am usually a very positive person and expected that would help me get through the tough times easier. I am hopeful that today will be the start of an upswing for me. I really need to get moving in that direction or the next chemo may hit me even harder.

One thing I've noticed since getting my port in is the feeling that my heart is closer to the surface of my chest. It seems that I am more aware of it beating and that it feels heavier some how. Has anyone else had that experience?

Thank you all for sharing yourselves here. It gives me perspective and makes me feel less isolated.

I need to give a shout out to my husband. He has been so fantastic! Monday night he went out at 8:30pm to pick up some Monistat for my yeast infection. Did not complain or even hesitate. I love that man!

deliciae

I just remembered about these threads so wanted to jump in here, though I technically started on Halloween.

2006: Age 36, Stage 1, "easy" cancer, had A/C/T x 4, no major side effects except hair loss & feeling somewhat generally crappy for a few months. Bleh. Tamoxifen later.

2013: Age 44, Stage 4, mets to liver and lung, it's been a rough ride so far. Started on Abraxane - 1st infusion, didn't even get to the Abraxane itself but had a reaction to one of the pre-meds that shot my BP to 172/124. Pulled off the infusion & sent to ER; 2 day hospital stay so that my onc and I could get that infusion (now carboplatin/gemcitabine) done, but that we did, though it took 6 hours. Been kicking my ass (an infection in my WRIST, really??) but tomorrow is cycle 2 and I am ready.

Onwards, friends. May the (life) force be with us all.

Palameda

Pompom, don't apologize for complaining. Bitch away. That's what this place is for! Out in the "real world" we have to smile for all the people who tell us to "stay positive." Bleugh! Easy for them to say. Delicae, oh yeah, I believe wrist infection. On Tuesday my demented cat bit my arm, it got red & hot & painful, saw Dr on Wednesday, got put on oral antibiotics. Didn't work. Got admitted last night to hospital for iv antibiotics. Well shucks. Shed a few tears feeling sorry for myself. I had 2 1/2 months of post-op infection, long nasty road I finally beat so I could start chemo this month. I just can't friggin believe it. Another infection.

Uh, Paulette you mentioned separate laundry. Uh oh, I never got that memo. Makes sense, but oops. Was everybody else told that? Ugh. My chemo start was rushed because of the long delay so I never got formal instruction. So have I poisoned my husband?

Lissy, my scalp pains come and go, so follicles are dying in fits and starts. Or maybe they just feel sick right now, and don't know what's in store for them. It's the lower 40 that are the touchiest right now.

inks

deliciae - so sorry about your recurrence and the trouble with first chemo. Wishing you strength through your treatment.

Pompom - vent away. Can you do a short 10 minute walk? When I was my crappiest I walked on my back deck, fresh air felt good and I think it really helped.

Is anyone else getting fills to their tissue expanders? I could not keep my fill appointment since my counts were too low yesterday. Apparently the best time to get fills is the day before or day after chemo. The AC gave me horrible bruises both from blood draw and the IV site (no port) so I'm thinking I would have to go the day before next time, since the fill needle is pretty large and the AC would make me bruise again.

Lissy2304

Inks - my plastic surgeon refuses to do fills while you are on chemo. He says he does not want to risk an infection. Makes sense and I sure don't want to have to take expanders out because of an infection and then start all over again.

Paulette - didn't know about the laundry, I am asking onco today about that.

VirginiaNJ

hugs to you deliciae- it's my second time too but I got another "easy" cancer. Wishing you nothing but the very best...

So do we all have our freaking periods!!!????? Mine came yesterday. I had my first chemo Monday - felt ok - then yesterday I felt like complete and total crap.

I had my very last fill with my PS yesterday. He had no issue doing a fill while on chemo - but I healed amazingly (never had an open wound or any dressings on my incisions....). Now I have my "balloons" til at least March bc he won't do the exchange until 8 weeks post chemo - so I'll be getting new boobs for my birthday which is mid March. Lol

Hugs all

inks

Lissy - thank you so much for your info. Now I am definitely inclined to postpone my fills until after chemo. The last fill has made it pretty uncomfortable to sleep anyways, the TE are into my armpits. I do not need any more discomfort plus a risk of infection. I was so grumpy when all I wanted to do after first treatment was to sleep but I could not even curl up on my side.

audra67

Well sad to hear but comforting too, that we are all still not tiptop and side effect free? The week of 14 chemo day girls at least-

Misery loves company and I have been sortof miserable. Still having the period from hell day 4 with pads! gross! My head has started hurting too but no hair loss yet, just super weak and dizzy and no energy. TIRED of being tired!!!

I also still am icing my wrist/arm infection daily- our temps dropped to freezing overnight and do not want ice near me...I am missing my daughter at pep rally this morning and I doubt able to travel to Waco for playoff football game this weekend. Somehow I thought I would have a week of not feeling well then back to normal- this is hard to deal with, waking up every day hoping to feel good and then NOT..

I am going to ask for the neulasta shot next time - does that seem to help speed up recovery? If so why was I not offered it??

I am too tired to get my haircut and asked my husband to do it.. should be entertaining:)

I didnt know about separate laundry either?!!!! whaaat!!!

Hope we all feel better asap!

Melrosemelrose

Audra67- So sorry you are having a tough time.  Hoping that things improve for you very very soon!!!!  To answer your question about the Neulasta and why you may not have received it after the first round, this is what I was told by the oncology dept pharmacist and my onco.  Both explained to me that it was necessary to see how my body would react to the chemo and whether my WBC could sustain at a level that I could receive chemo without it.  Not everyone needs the Neulasta.  If I demonstrated that I needed it ( ie infection, high spiking fever w/ chills) then I would receive the Neulasta shot after the following rounds.  The Neulasta shot is expensive and some insurance companies will not automatically cover the cost unless the patient demonstrates the need.  What the shot does is to give a boost the bone marrow capabilities for making white cells since the chemo affects the WBC.

As for the laundry situation, my husband and I have always kept our laundry separate and fortunately, he does his own.  So I never had the issue about mixing laundry with chemo/no chemo. 

Make sure you write down how you are physically feeling after this first chemo so you can let your onco know.  He/She may have some solutions for handling some of your side effects.  You are heading into your nadir week so take it easy and rest and try to eat well.  (((HUGS)))

VirginiaNJ

NOT getting the Neulasta shot was never an option for me.....both my NYC and local onc said that would be part of my chemo regardless of what kind of chemo I got...

Are pple not getting it bc of insurance maybe??? I know it's crazy expensive.....

Amazonwarrior

I keep reading these posts with my morning tea...

PatAlameda: Thanks so much for the wig tip. I like the web site (TLCdirect) and going to order one today. My choice is the pixie style called: Bonnie wig

So sorry to hear about your infections...hang in there...you are a real trooper

VirginiaNJ: I am starting to feel pretty crapy myself, as my period is on the way...hurray!

Inks: I had a mastectomy, but opted not to have the reconstruction done right away to scale down my chances for complications. Sure it's hard to look at myself in the mirror after a shower (even resorted to adorn myself with some eyebrow pencil "tattoos" around the scar to give it a certain 'look'), but so far didn't have to deal with any infection and the healing process was fine. For me, beating cancer is first, cosmetics ( hopefully) later.

Deliciae: My thoughts and prayers to you. Keep up your spirit.

Pompom21: I have noticed that my heart beat is somewhat stronger after CT especially at night.

Lissy2304: Talking about a fake boob. I ended making one myself out of some foam and a sock. I wanted something right away to go about my daily life, but the lady at the store where they sell them suggested that they can fit one in for me 'once I am fully healed, in about 2 months time'. Got to say, that the homemade job actually does the trick for now!

Bec65

Happy Friday everyone!

Paulette23, thanks for the welcome! I never heard anything about separate laundry, just flush twice for the first five days of every cycle. What a pain.

VirginiaNJ, I got my last period the day before my mastectomies. I had seen my surgeon three days earlier and asked him if I should stop taking the pill since I'm estrogen positive. He looked at me and said, "Uh, yes. I should have mentioned that." Arggggg.

Lissy2304, my head hurts when the nap of what 1/2" hair I have left is rubbed the wrong direction. This seems to happen ALL night long when my sleep cap shifts. I'm going to try to rub off what I have left in today's shower.

Audra67, Neulasta was part of the regimen my doctor prescribed for me. My insurance is making me give myself the shots, which isn't hard, just scary knowing if I mess up there isn't another $4500 syringe available. I actually ran a fever my first cycle, but I fought it off within a day. That's probably b/c of the Neulasta. It does make my hips and knees ache a bit, but I can still get out and walk 3+ miles everyday, so it's not that bad. And, probably most important, when I had my bloodwork done on Day 13, my numbers were nearly what they had been before I started chemo.

Amazonwarrior, I didn't get set up for reconstruction either. My surgeon didn't want to b/c he said "it would complicate radiation later on." I didn't research what he said at all; I was so focused on removing bad body parts ASAP, that I compartmentalized it to think about another time. I'm told I have great scars, whatever the heck that means!

Lorreymom, welcome to the IIIa club! I'm sorry we're both in it but glad for the company. I LOVE your Dr. Seuss quote! I hope your chemo goes well today!

wallymama

Ok ladies, finally starting the AC on Monday morning. Should have been today but the doctor's office said the insurance hadn't said they'd pay and the insurance said they hadn't gotten anything about it. But anyway, I no longer feel like I've been forgotten. Is there anything I should do, or don't do, this weekend to get ready? I got three Rxs for nausea last week, so hopefully that will stay under control. To me that's the worst sounding SE. Can't stand to be sick to my stomach. Can[t even hear it on TV or a movie. Hoping to get back to work some next week, since I had to be off this week because of the port placement. No simple numbing for me. Knocked out, throat tube, Dr tried 5 times to get it on the left, couldn't get a straight shot, so put it on the right. Pain is gone, just a pulling sensation left, but I couldn't do anything for a week. Normally I sleep on my side or stomach, but with holes on both sides I've had to sleep on my back. Keep waking myself up snoring. It's amazing how just having the first one scheduled has calmed most of my anxiousness. Now I feel like we're fighting back. I really feel better than I have for weeks.

gia444

VirginiaNJ,     I have not had the neulasta shot yet.      I go for my #3 treatment on Dec 4 and I might get it then.     My MO said so far I do not need it.      My insurance will pay for it so that is not an issue.