Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
-
would it be weird to meet up once a month or once a year via email or facebook? Or meet back on this thread, tho I don't know how these threads work so I'm not sure it would still be open in a year. I have come to rely on you wonderful ladies and would hate to lose touch. It's difficult to talk about some of these details with anyone who hasn't been through it. Heck if we all lived within driving distance of one another it would be fun to get together, but there are gals from CA to TX to Canada to FL with the northwest and east represented as well, and me here in Nebraska so I'm guessing digital meet-up would be more practical
your thoughts?
0 -
Lolalou-
Feel the same-just want to get this behind us. I think going ahead with chemo is a good idea. You have to give it your all, even though it will suck for awhile. I did #1 TC yesterday. Just tired today. Keep saying, "one down, three to go."
0 -
Ladies--- You can form a private closed facebook group that entry into that group is by invitation only. This way you can control can be in the group and maintain some privacy. Just pick a name for your group. Let someone be the administrator. Whoever would like to be in the fb group would send a bco private message providing her email address. The administrator would then send out a message to the person requesting to be in the group that she has been invited. How do I know all of this.... I happen to be the member of two private facebook groups with gals that I met on these threads.
To those gals just starting your chemo..... Wishing each of you the best and an easy time with the chemo. If you have questions/comments, continue to post here. One of us who has already completed chemo will be around to check on this thread and to help you. HUGS!!!
0 -
I am starting taxotere and cytoxin in two weeks. i am opting not to get a port for the four treatments. i've been reading about all of the side effects of cytoxin, which really scared me. i will try the claritan for the wbc shot. do they give you anything for pain?
0 -
Changlyn: I recently finished cytoxin with 5FU and epirubicin. I had very few side effects other than fatigue and low blood counts. Really no pain and no nausea. They gave me pre-meds for nausea (aloxi and one other along with steroids.) I am now getting taxotere with herceptin..... a bit of bone and muscle pain days 3-6 but used valium to help me get comfortable at night. My advice would be to have something you know works for you ready for when you need it. I played phone tag with Dr and pharmacy one day while hurting. Good luck. -- you'll do fine.
0 -
Changlyn- I definitely understand how you might be apprehensive about the chemo after reading the list of side effects. Just remember that everyone reacts differently to the same chemo regimen and one doesn't necessarily experience every side effect that is listed. Just knowing how to manage the side effects will help you feel a little less frightened. Please try to remember that if you start experiencing side effects and they seem to be escalating, do not hesistate to call your onco to get some help. It is the onco's job to help you get through treatment. Don't be afraid to call thinking it's the weekend or it's in the evening; there should be an onco on call to help you 24/7. As for pain management, do ask your onco what OTC pain meds you can take such as Tylenol, Motrin, Advil. If the pain is severe, do ask for for prescription pain meds. Glad you know about the regular 24 hour Claritin to help prevent the bone pain from the Neulasta shot. Just remember that you can still experience muscle aches and joint pain from the chemo itself.
Wishing you the best. If you have any questions, always ask.
0 -
Awesome, thanks Melrose.
4 more rad boosts... then Femara. Fatigue hit last week, but it took a few days to figure out it was the rads. A little sore but pretty ok.
Welcome chemo sisters. Hopefully you will have few side effects. There is great info on these threads to help you thru. Hydrate, hydrate, hydrate. Be kind to yourselves, rest when you can.
Peacefull energy to all.
0 -
Hi ladies
As you can see from my signature. I am on TC x 4. Due for #2 on Friday
I am concerned from your discussions of 0 node involvement. Considering i had 1 (still encapsulated ) node ... I did have great margins and they have said no rads needed. Does having ILC
Maybe make a difference ??
Why am I not on either x6 treatments ( not that I want an extra 2 ) or an alternative regime like AC-T
My onc is extremely experienced (3000 women) and top in her filed in Western Australia. So I trust her judgemt but your comments on this thread do make me ?? ?? Her choice
#1. TC was a breeze for me. Carried on working and playing golf. So am interested to see if #2 knocks me around a bit more ??
NC x0 -
Hi Nocompromises!
I had 4 TC and jsut finished on June 26th. I found that ...
2 and 3 were the hardest as far as SE , for me. I assume you are getting a Nuelasta shot the following day? Those shots, for me, were what caused the bone pain and they hurt me! I used the narcotic pain meds the MO rx'd and my advice to you is DO NOT settle for pain when the MO can give you meds that will help you!
I never got nauseated but did get some loose bowels from the 2nd tha 3rd...never was constipated. Just fatigued and pain in my bones which eased up about a week after each treatment. Hairloss at about day 13 after 1st treatment.
I am now done with TC and just started the Arimedix and I have to say that the bone pain is already a concern of mine as far as SE from that little pill. My arms and wrists hurt..but I try to ignore it and go on about my life because I am grateful the hard part is over...I hope the same for you...hope you get thru this with flying colors and min SEs. Know that I am thinking about you and sending gentle hus your way!
runnermom
0 -
Hi runnermom
Thnx for your quick response
I didn't have neulasta with first cycle. Neutrophils dropped to 0.1 at day 10. Have new blood test day b4 round 2 was hoping to escape those neulasta jabs but we will see
I reckon I got away very lightly for round 1 and am under no illusions that 2,3 and 4 could be much harder. Time will tell. Bring it on and roll on Friday sept 13th ( my last treatment )
What made you go for the PMx ? I am undecided at present whether to reconstruct at all, do the right one. Or do right one and have PMx on the left to make them match but don't want to loose intimate sensations ...
How did you find the TEs? Painful or ok ??
NC x0 -
Thanks to everyone who posted on this thread, it's very educational - I read thru pages & pages of it bec. I got my chemo marching orders from my oncologist. Taxoter & cytoxan every 3 weeks for 4x, starting in about a month (I just had a lumpectomy). Doing research now so I'm prepared!
Maybe I'm weird (ok, I know I'm weird ;-), but I'm not super worried. Costuming is my big hobby, so I love wearing wigs & am excited to buy a bunch of new ones. I've never liked my big bushy eyebrows, so cool, I'll save money by not getting them waxed, they'll just fall out & I can draw them in how I want them to look. I can even wear fabulous false eyelashes like a drag queen if my long real ones falling out bugs me.
Other side effects all sound like things I've had already -- nerupathy? been there, done that with one of my migraine meds. It went away after a few months. Same with chemo brain (same migraine med), & ok, it hasn't entirely go away, there's the "can't remember a word that's on the tip of your tongue" side effect totally common to this med. Naseau, fatigue, pain, all seem managable with meds, diet, lifestyle adjustments, & support. I'm premenopausal but happily childfree, so fertility issues aren't a problem. Also my mom swears that menopause ended her migraines so I've been looking forward to the big change.
I'm sure there are times that will suck (parts of the past week recovering from surgery have sucked!). But I'm feeling prepared. I have a loving & generous support network, including my husband, mom, in-laws, & lots of friends both nearby & online. And now I've found this group, which has already been great over in the lumpectomy lounge. It's awesome to connect with ppl going thru the same thing who really know what you're talking about.
I'll prob. have lots of questions as my start date approaches. Thanks in advance!
0 -
Batcatlady...great attitude. I am finishing up chemo. My ten cent advise is be prepared for side effects and speak up when u have them because there is usually something to make them manageable, know a few days may be a downers and most importantly give yourself some down time and treat yourself. I love looking through gardening and craft magazines so I purchased quite a few for my " relaxing" days. There is usually a thread for the month you start chemo to join. Very helpful as you are all going through it at the same time.l if not you can start it.
0 -
Just thot of an early question for all those who've been thru or started CT (or is it TC? I still haven't picked up the lingo here). About when did you start losing your hair? From what I'm reading, it seems like somewhere after the first treatment, maybe day 12-15, right?
I have an out-of-town event I had planned to go to that would fall right before treatment #2 of 4, so I'm wondering if I'll be shedding hair all over the place (at least I already have wigs & hats in my crazy wardrobe). Yeah, you can't schedule side effects, but I'm trying hard to not let cancer take over my life any more than it already has. Gotta keep doing the stuff I love.
0 -
Nocompromises.. I hope you don't have to get nuelasta..but in my case even with it I developed a kidney infection just after my first round, I recovered with antibs in a few days but was pretty ill for a time there..don't know what it would have been like w/o nuelasta? Who knows? (that was also when my boss of 5 years decided we were no longer a good fit, I was their Nanny, becasue I was too sick to work..uhg) That's another story,,oh well
Regarding why I chose a Bi lat DX ..I didn't want to worry if the cancer would come back in the healthy breast plus I wanted them even..just my personal choice. Re: tissue expanders..OUCH OUCH AND OUCH(does that answer your question..LOL) I finally get them out on August 15th! YAY! gotta get these turtle shells out from under my pecs!
0 -
batcatlady
I had an event to go to just about when I thought my hair was supposed to fall out(it actually fell out the last day of my trip) but I shaved my head just before I left for the outting and wore a wig or a scarf while out of town..the little nubbies from my shave down started falling out in the hotel bathroom sink the last day and I wasn't so shocked bc I had already shaved down and it was my choice when to lose my hair..that was my experience...
xo RM
0 -
Runnermom.
I don't like ouch, ouch and ouch
. Great news re aug 15th
Batcatlady. I had TC #1 July 11th
Hair needed buzzing to #4 day 16 and today is day 20 and it was looking soooo mangey that I went to #0 total shave
Hope yours can last. I would shave and use your wigs.) 0 -
Here is the short version of my hair story.....
I had waist length hair at diagnosis Feb. 2012; cut the hair to a short bob March 2012 right before my UMX and in early May 2012... almost three weeks after my first round of chemo, I cut it to short short boy cut. I never cut my hair after that. When I say I cut it, I did cut a majority of the boy cut myself.... I made little ponytails and snipped those off myself and had my husband clean me up with his trusty electric clippers with a 1 inch blade guard. No one was home when I did the self hair cut but it was very liberating. I did not make any elaborate plans to shave my head or for this final cutting... I had gotten so very annoyed that my hair was just falling out everywhere... on me, my clothes , my pillow and just tired of constantly using a lint roller to get that hair off of me. I did not shave my head or buzz my head because I wanted to see if all of my hair would actually fall out. I had a very thin veil of hair left at the end of my 6 rounds of chemo. Throughout my time in chemoland, I rubbed my head which was very comforting and it was reassuring to feel what little hair I had on my head.
I had a free wig through the American Cancer Society's Look Good Feel Good program but I never wore it. I opted to wear hats, bandanas, Buff's and knitted caps or just nothing because of the summer heat.
You will figure out what best for you. Again, there are no written rules on what to do with the hair, you just want to be feel good and comfortable with yourself. Always try to remember that you are beautiful, no matter what.
0 -
I have ILC Grade IIA. No node involvement. I am in the Chicago area and am not sure if things are different in your area. I am doing TC x4 with 6 weeks of radiation. I have been told ILC is "tricky" as it does not usually develop as a lump-it tends to branch out.
Why is you doctor not wanting to do radiation?
0 -
Biker girl
I think because I had very clear margins ( 30mm, 60mm and 10mm ). and the one node was still encapsulated. I should probably follow it up more. But you had a lumpectomy whereas I had full Mx and all lymph nodes out so nothing left to irradiate ??? IDK I need to ask more I think.0 -
When I knew I had to do chemo I cut my hair (mid back) to my jaw line in a cute bob. Then about two weeks after the first treatment it was coming out so badly I chose to shave it down to a 1" pixie. Of course it continued to fall out but that was it for me. Its pretty traumatic to lose your hair and I had a very hard time with it. Today I'm 14 weeks out from my last CT - 4 treatments and I have about 1/2 of hair covering my head. I started using Nioxin on my scalp after my second treatment and it did a great job of cleaning out the follicles; little pieces of sand is what it felt like
0 -
6th and final round of TC today! I'm bloated and the steroids are giving my very fatigued body a boost! I fly out tomorrow after my Neulasta shot. I'm getting scans at MDA Houston. Here's hoping the chemo worked well! Surgery is next (another MX will remove the recon and spared skin---will be flat on IBC side for a while). Then 4+ weeks of twice per day rads, starting 6 weeks after surgery. Both will be out of town in Houston.
I can't believe it was my last infusion! I told my dear nurses if they see me AGAIN I will really be cranky!! And my blessing was that I only got stuck once for my IV (no port for this course). And no tears! This is a good day.0 -
Yippee Paula!!!! All done with chemo!!!!! Congrats!!!!
As I told you before, if you need some directions or need info while you are in Houston, you can message me. Happy to help you....
0 -
Congratulations Paula
0 -
BTdemo-I was in the May 2013 surgeries board and became very close to the 14 ladies in there (nothing like going through hell together!)..we have since went to Facebook as Melrose was talking about and have our own group. You can't see our post in any timeline and we can "like" something without it going there as well. We are planning to meet somewhere warm and tropical this coming May to celebrate the year. I honestly do not know what I would have done without the support and trading info..laughing and crying together.
I just had my first chemo treatment last Thurs. I am very glad to see this board, as the other chemo boards have people with all kinds of chemo regimens..and I start getting scared reading about really bad SE's on one..and realize they are taking a lot stronger than I ..so I love this board for CT
I went through mine ok. Worst part to me was the 1st and most of the 2nd day..the nausea meds/steroid mix..was awful to me..brain wasn't clear and jacked up..but exhausted at same time..after that fatigue from chemo on 3rd day was walk in the park. I have a question-has anyone experienced kidney pain? My 3rd and 4th day, I had kidney cramps for about 15 min at a time..hurt!..but then would be 3-4 hours before it happened again. It went away by Sunday. My onc nurse said she has never heard of that with our drugs..they are doing test. It worries me about the next 3 times.
OH HAPPY DAY!!! Congratulations Paula!!
0 -
ckmoss: thanks for the info. And yes, I had kidney pain a couple of times within 4 to 6 days after my first chemo (just finished rads today!! yay) and discovered it was because I had 2 busy days and did not drink enough water. After that I made sure I drank at least 60 oz of water every day...even through rads. Did not have kidney/back pain after that. I also had a rash after the first chemo. Again within the first 4 to 6 days. So water, water, hydrate, hydrate. On a side note, I did mention this to my onc and I think he may had adjusted the chemo cocktail a little bit.
peaceful vibes to all
0 -
I am on 4xTC regimen and on Day 11 following my 1st infusion. I have to say I feel so lucky every morning when I wake up still feeling great. My energy level is normal, I am walking 1.5-3 miles every night, I have very minimal SEs (occasional loose stool but I have that in my day to day life normally!). I have noticed that my sense of smell is heightened and, I must say, smelling the extra 10-20 odors that I didn't used to smell is NOT added value. Most ordors are not pleasant so I will be happy to go back to normal on that front! My hair is all still in and feels really strongly tied to my scalp. I am having trouble wrapping my mind around the bizzare idea that in a couple of days it is all just going to let go and fall out of my head.
I read all of your advice and went to a naturopath cancer specialist so I am taking some supplements that might be helping combat the SEs:
-Magnesium to replenish what TC takes from you
-L-Glutamine powder (2 tsp / 3 x day) to avoid neuropathy
-Claratin 24 for the Neulasta shot
-Ginger capsules
Hoping I can stay feeling this healthy and this lucky throughout the next couple of months!! Maybe I will be this total anomaly and keep all my hair through treatment.....we'll see!!
0 -
franky-- Wow on the hair. I noticed a little shedding about 14 days after my first chemo. Everyday, thre seems to be a little more shedding which was noticeable in the shower drain. A few days before my second round of chemo, I became aggravated with the continual shedding that I took matters into my own hands and made some little pony tails out of short bob and snipped those little pony tails off. At that point, I had a short short boy hair cut and never shaved or buzzed my head. Slowly but surely, the hair came out after the second round of chemo. I was never totally bald but had a very thin veil of sparse hair on my head. Maybe you will be one of the few who doesn't have any hair loss from the chemo. Wishing you the best!!!!
0 -
Well done Franky. You sound like you are coping similarly to me
I managed 4 rounds of golf thru round 1 TC. Hopefully round 2 is as good for us all. I am I. Day 2 round 2. Will let u know how I go
Good luck with the hair
I got fed up with stubble and but the bullet and it feels more comfortable now. NC x 0 -
Franky-You are 2 days ahead of me, so we are very close. After my 5th day..I was pretty much good to go. I got my hair buzzed 6 days after my chemo. I just can't take the clumps coming out psychologically or the hair all over the place (Funny , we picked a puppy that wouldn't grow up and shed much and now having to worry about me! LOL.) only to end up shaving anyway..Its not that bad. I wear a wig to work, but must confess am not out of the parking lot before its off my head. Of course, Im sure this will be different story when I'm completely bald. Never thought as myself as real girly or foo foo..but damn! have I missed my breast and hair!
The only side effect that has kept lingering is my tongue is sore. Theres no bad spots in there..just feels like its constant burning. Ive been using biotene and that seems to be helping. I am icing my mouth next time. My onc RN said she had seen people do that and they still had mouth issues, but its worth a shot! I am going to get those supplements you mentioned! Ive been doing fresh ginger in different dishes..but def want the other ones.
I hope ya'll continue to have no SE's and its great that you can get out and be active still. Ive been working extra hours at work this week and will next week..trying to save back money for these bills that are poring in.
0 -
Woo Hoo Congratulations to you, Paula (: !! I am having number 3 of 6 infusions tomorrow, so I will be over the hump and starting down.
The infusion itself was uneventful-I thanked my surgeon all day for my port (:SE from first treatment was a bit brutal-- bone pain and the feet hurt so bad I hated to even let them touch the floor- I had bad headaches for three days and could not sleep the first two days following - BUT no nausea-I had to go back a week later for WBC check. it was very low so got the N shot- at that time they asked about the SE-they said the anti nausea meds were what gave me the headache- When I went for treatment #2 they changed the anti nausea meds, and I had no heacaches that time--treatment #2 was was less brutal, but seemed to last longer- I am not sure if that is b/c the N shot was given to me the day following treatment instead of a week later like with treatment#1?? I didn't experince the bone or foot pain- just a general feeling of tiredness and of not feeling well.. with both treatments I have a horrble taste of rubbing alcohol when I try to eat or drink anything- chocolate milk sees to be the only thing so far that tastes as it should-
I eat ice chips on the way to the treatment and all during it as well.. I have had no mouth sores so far, knock wood-I don't know if the ice chips help or not but I will continue to do them.
My hair started to fall out day 10- took about a week.. I guess -
Good luck to each and every one of you as your battle continues..
0
