December 2012 chemo group

beckstar18

Argh, woke up to some vaginal bleeding but it's too early for my period.  Guessing it's another lovely SE of the chemo! 

I can't sleep worth a darn at night. The last 3 nights have been constant tossing and turning.  I just can't get comfortable, although this is the same bed I've been sleeping like a baby in the last several years lol!  I'm taking Ativan at bedtime but it doesn't help apparently.

Woke up (day 6) still with GI upset.  Heartburn and queasiness, I really hope they go away before tomorrow when I have to be at work.

I feel like my post is one big complaint but I'm tired of feeling like poo  

Runnergirl2013

Hi everyone....this is day 6 of my first treatment....feel like had a bad flu - achy and queasy and tired.  But this is definitely manageable especially if this is the worst that I have to deal with.  They sucky part is that my period came several days early so that makes me feel evenmore achy, crampy and tired.  I was hoping it would just go away and never come back

I went for a walk every day so far....it feels so good when I am out there but often come back tired .....it's so worth it!

I have a question for everyone - do any of the doctors say there is a way to prevent the mouth sores?  Is the baking soda/salt water mix supposed to help "prevent" or just treat them once they appear?

Hope everyone is well and hanging in there!

beckstar18

Runnergirl, my MO didn't talk about mouth sores.  I'm on TCH combo.  One of my friends (same MO) who's on AC/T got bad mouth sores and she was told to use the mouth wash to prevent and treat mouth sores.  Maybe my combo doesn't cause them, or not as much so that's why they didn't talk to me about them?  Baking soda/saltwater rinse can't hurt anything, may as well try it.  My friend complained that the mouth sores were one of her most bothersome symptoms so if there's any chance to stay on top of it I'd take it!

EDIT: okay so I google "Taxotere mouth sores" and sure enough it IS a SE, so I guess I'll start doing the rinse!

Bren58

Steiner - try prilosec for the heartburn. MO said it should help.

Not sure why it has taken me so long to figure out that I needed to take Imodium! Maybe because I wasn't really having D just that food was going thru me so very fast. So at 4AM, my usual middle of the night time for another bathroom visit, I decided to take the Imodium. DUH! Made a huge difference, now my guts don't feel like they are in a constant state ot turmoil.

momto7

Thanks Bren58 she did  mention some thing about nausea drugs too and she gave me a RX for one in case i need it someone said keep satlines by the bed  in case  of feeling sick and some sprite or 7 up  i might sjut so that

Anonymous

steiner18 I had my time mapped out too with what I "expected" to take off work with SE from chemo. Expected when the time would run out and pay without leave would start. Luckily I can work from home with the pox so I hope not to take any more leave. Isn't it awful having to worry about being short on leave and pay during all of this? We should be able to just concentrate on getting better.  

Funny how some of the tips in the chemo threads have helped me this week. Mouth rinses for mouth sores, baby wipes for "issues" downunder, and foods to eat when you just don't have an appetite. Boy if I am not ready for treatment now I never would have been. Thinking I may not be able to stand a wig. Even when everything scars over. From what I hear about the wigs being so uncomfortable I don't think I can take the discomfort now.  Ugh!! This is the worst year ever for us ladies! I'm getting on line and booking my summer vacation to Florida now!! We all deserve something great to look forward to next year.

FriendGwen

I agree skimommi - visions of being at my parent's cabin on a lake in the Adirondacks this summer is what keeps me grounded right now! Plan that summer vacation on Florida!!

Bren58

Momto7, yes get that script filled for the anti-nausea meds. Also ginger ale is better than sprite and seven up for nausea. I got the 8 pack of little cans so I could just open one when I needed it and didn't have to worry about a big bottle going flat. I wrote down all kinds of tips from others that have been thru this. Some I haven't needed yet and some have been a great help.

Gwen & skimommi, I think booking a summer vacation is a great idea! We all need something to look forward to!

lovetosail

Hey there,

Just popping in to say hi - I was a December chemo girl 3 years ago.  Hang in there ladies, by this time next year you will be back to normal - you'll have your hair, your energy and you won't be achy.  And yes, plan a nice summer trip, you all definitely deserve a relaxing vacation!

Good luck with your treatments, and best wishes for a peaceful holiday!

beachlovingmom

Hello ladies!  I just joined this forum and look forward to the support.  I have a second meeting with my chemo oncologist tomorrow 12/10 to make a final decision on my chemo regime.  She recommended 4 AC and 4 Taxol.  I sought a second opinion last week and that doctor recommended 3 FEC followed by 3 Taxotere.  I have ILC, so there are fewer of us on here. 

I hope to get my port in the next few days and start chemo by the end of the week.  I hate the not knowing and have tried to research which chemo is better...difficult to know either way, so hoping my oncologist can help with a final decision.  Double mastectomy with expanders went much better than I could have ever hoped for (one month ago) so I'm hoping I do well with the SE from chemo.  Thanks for everyone's posts...planning to be proactive with as many SE as possible.

Wish me luck in making such a monumental decision in the am!

Bren58

Welcome Beachlovingmom, this is a great group of ladies here. Hopefully you will find much support.

Lovestosail, Thank you, I needed that encouragement!

mfml

Steiner - sorry to hear you didn't sleep last night... You and I seem to be on similar schedules of chemo and SE's... I was also jittery for the first time last night.  My husband kept asking me if I was sure it was Ativan I took... anyhow..  I think I am going back to the ugly recliner I didn't want for sleeping tonight - it seems the night I sleep there are the best nights I sleep.  I have started taking pepsid for my heartburn - I guess it's helping.

I thought I was homefree with the tissue expanders and only needed to worrry about chemo - then today I noticed my incision had "popped" open and I have a pussy red spot... I hope its OK to wait til tomorrow to see about this because I am not going anywhere now.  ugh... what a dissappointment.  I am worried about inferction since I started chemo.  Last week they took some of the fluid out of the other side - and I'm guessing they should have done it for both.  They even talked of cutting and restitching it right there on the spot last week!  I'm really annoyed to have to deal with that tomorrow - I had a goal of making it all week to work.

My doc prescribed me steroids for after chemo - but my nurse told me not to take them this time (first time).  I know I had steroids in the premeds.  I am wondering what that would have done??  I haven't been too bad really - I am just wondering about what the steroids would have done.

Steiner - I really hope you sleep tonight and have a much better day tomorrow.  You are 1/4 way done with the TC/H!  Hang in there!

M

mfml

Best of luck Beachlovinmom!  I just finished my first AC - Im 5 days out and doing OK!  Just hang in there - these ladies here have had lots of suggestions that helped me - I hope you find good info too.  And congratulations on no problems with the TE's!  I also had a breeze until the the last fill... Have you had many fills yet?  I think my PS went too aggresssive with the fills and my incisions are "popping" open now - yikes!  but - I am guessing she will take some out and stitch me up tomorrow

I am also struggling with a decision on my chemo - I am doing AC every two weeks x 4 then I have the choice of taxol once a week for 12 or taxol every 2 weeks for 4.  If you don't mind sharing - I wouldn't mind knowing why your doc suggested you go with the 4 taxol.  I haven't gotten any convincing info from my doc on that - she said there were really no good head to head studies.  I just figured the lower dose every week would be easier to tolerate - but if I continue to tolerate this AC well - I may just go for the more every two weeks taxol and get it over with..

Good luck with your appointment tomorrow!

M

beckstar18

mfml, OUCH!  So sorry to hear about your incision trouble on top of starting chemo (as if that wasn't enough).  Gosh, I hope they can fix it and it heals okay for you and doesn't cause you too much pain.  I had surgery around the same time as you and would be surprised to see one of my incisions "pop", it seems they are really fully healed.  Who knows though, if there's an infection or the chemo has anything to do with it. I have to agree with you on doing the Taxol for 4 weeks and just being done with it, especially if you tolerate the AC alright.

My heartburn and GI symptoms got slightly better today.  That is a  good thing because I'm back at work tomorrow.  Was wondering how I'd be doing for work.  As far as the restlessness and agitation, well I found those are SE of Zofran and compazine, both of which I've been taking since my treatment last week!  Maybe once I can lay off those I can get a good night rest.

beachlovingmom

Bren58 - thanks for the welcome!

mfml - so sorry to hear about the problem with your fills.  I have had one fill, then a double fill.  No problems other than painful skin stretching that was alleviated with a muscle relaxer on the worse day and advil the next day.  I am due for a double fill in the am and then one more double.  I had NO idea the fills could possibly cause the incision to break open.  I am going to ask my plastic surgeon in the am.  I was okay with the plan for double fills as I wanted them done before I started chemo but I'm curious to hear his answer.  I am also in physical therapy to help with the fills and lymphodema prevention.  The pt said my skin is doing great so far. I appreciate the head up!

I believe my onco suggested four taxol because my tumor is so dependent on estogren and progesterone (8 out of 8 for both).  I will have a hysterectomy after my cancer treatment as well as hormone therapy due to the hormone dependence and due to BRAC 2 positive. 

I will let you know what she has to say tomorrow.  Hoping I can get a port and start chemo this week so I feel well for my boys' winter break and Christmas. 

dcsandpiper

Hi All



I also just started on Dec 4th my 4 cycles of TC. So great to have just found all these discussion groups! And this one in particular!



I'm looking forward to hanging with you ladies/warriors through all this. My first infusion itself wasn't bad but now the aches and pains and sore mouth and stomach problems seem to be making their way in. I'm going to have to try the baking soda mouthwash. The bloated stomach feels very uncomfortable. I think maybe I need a good walk... My partner is visiting his mom this weekend, and took the dog, I just realized this is making me miss my regular walking routines so maybe I need to get back to that...

I used to run regularly but a cold has been hanging on since the week before chemo, but maybe I should just ignore that and get back out there?



Nanc: please do look for a better infusion place... Mine was very nice, the nurses super friendly, and it is a calm place. Makes a lot of difference and you should not be feeling uncomfortable there.



Went wig shopping this weekend too and found one I like! No bad hair days ahead at least during chemo! :-). Got a couple cute hats to so I'm good to go. Just wish my mouth and stomach felt better. I just feel like my stomach is not working properly. ugh. Liquids don't taste the same. Water tastes horrible. Soda water is better.



Do you really think the hair loss will start after just a couple weeks? They told me it would be likely after the 2nd treatment.



I'm hoping to stay productive work wise... We'll see. Started feeling tired today and having trouble sleeping with all that muscle achiness. Sigh. Hope it doesn't get worse.



Great to have you all to blithering on to, though I think it's time to stop. I'm scared but I'm hoping all this treatment will do the trick!



I'm not looking forward to feeling like this or worse for 3 months... But then it's only three months and hopefully it will kill those nasty little cells. And then there's radiation to worry about.



Sleep well,



Sandra

Dawn1008

Hi. ladies!  My name is Dawn and I just started chemo 12/4.  ACx4, TX12weekly.  I am on day 7 after my first treatment.  My worst day was day 3, I stayed in bed all day, feeling like I had a bad flu bug!  Since then, I have been feeling better.....except for my stomach is just not right.  I feel like I have mild heartburn all the time and a slight queasiness that only goes away right after I eat a light meal.  I find that the 6 meals (light) instead of 3 is a good deal; but just wish I could get rid of the heartburn-like feeling.  I have it even when I eat very simple stuff like oatmeal.    Any suggestions? 

Sandra, they say if you make it past day 21 without starting hair loss... you will only have minor loss.... and they say it goes QUICK and in clumps, not strands.  So you could be hairless in as little as a week.    I went out and got 2 wigs; although I'm not sure I'll be able to tolerate them.  Scarves and hats are on the shelf waiting. 

Everyone, have a peaceful rest.

D

Runnergirl2013

So are most people doing wigs or hats? Or both? I was just going to do hats but now wondering if I should get a wig as so many of you are ....

Bren58

Welcome Dawn and dcsndpiper!

Dawn, ask your MO about Prilosec or something similar for the heartburn. Best to minimize as many SE's as possible

Runnergirl, I bought a wig for work and church, but will probably do hats and scarfs for everyting else. I haven't lost my hair yet, so we'll see what I actually do when the time comes.

Steiner, there are so many anti nausea meds, maybe you could get one that won't cause the agitation and restlessness. I thought the Compazine would help me sleep, but it actually kept me up all night the one time it took it before bed.

I for one am so frustrated by having to take all these drugs in addition to the chemo. I am glad they are available to take care of the SE's, I just hate putting all these chemicals in my body in on a regular basis. Oh for the days of the occasional Advil or Exedrin!

dcsandpiper

Hi Dawn!



Sounds like we are similar except timing. I was pretty ok until day 5... Just tingly tongue and lips and liquids tasting weird. On sat starting feeling the stomach issues, though I thought it was just because I had sushi with some horseradish (which did taste good). Sunday all the flu symptoms started and this morning I feel like shit, my boobs hurt again, and my mouth hurts, it feels raw. I'm going to try the mouthwash suggestions as soon as I can drag myself out of bed and go buy some of that stuff.



So what do we take for the flu symptoms? Plain ole flu Meds? Pepcid or Prilosec for tummy?



Does this just continue or do you get better before the next treatment? Mine is scheduled for Dec 26. I'm hoping the week before I might be feeling ok.



Thanks all!

FriendGwen

Runnergirl - if your insurance covers it, which it probably will, you might want to get a wig. I expect I'll be in my wig for months while at work and then sporting the hat/hair wig at the gym or running around. Home will be scarves and caps. Although who knows how it will all pan out!

I'm at work feeling very spacy. I took an anti-naseua at 2am but otherwise haven't had anthing since Friday. I feel achy but intend to go for a walk during lunch and see how I do. I'm not feeling the best I've ever felt but it did occur to me this morning that I have had hangovers worse than this!

Bren58 - I have never been one to take meds either so this is kind of weird. I'm still hesitating unless I feel really bad as it seems like the side effects from the meds (constipation primarily) might be worse than the symptom I took it for!

I'm getting the idea food is not going to be a big source of enjoyment. Boo! Maybe a good smoothie or something will help.

Runnergirl2013

FriendGwen - your point about hangovers is funny.  I feel like i had the flu and have had worse hangovers and worse post workout feelings than this.  If this is as bad as it gets - I can get through this....I just hope that the SE's don't get worse with each treatment - does anyone know if that's the case with T/C?

FriendGwen - I didn't even know that some insurance companies pay for wigs - did yours?

FriendGwen

My MO wrote me a script for the wig and when I went to the wig place on Saturday they were submitting it to insurance and felt pretty confident it would cover up to $500. My wig was $350 but another $140 in hat/wig and hats so they may be able to get it all covered. I wrote checks which I hope won't be cashed. I really think wigs should be like the reconstructive surgery... covered by insurance should women want it. I'll know for sure by the end of the week and will keep you posted.

I walked during lunch and then got sidetracked to get a strawberry smoothie. It went down okay while in my mouth but then the sense of mouth burn returns.

Runnergirl2013

Friendgwen - You make a good point about walking that I wanted to shrae with others.  Ihave walked every day during chemo.  And whil I think I have no energy when I start - I actually feel a ton better when I am finished.  I encourage everyone to try it - it really helps me to feel better!

beckstar18

Runnergirl and Friendgwen, yes walking helps!  I went out yesterday and did some shopping and just walking around a couple stores helped me feel so much better.  Getting out of the house and moving was great.  Congrats on the wig FriendGwen, and yes, Runnergirl ask your insurance!  Also check around with local non-profits.  I got a free wig through Cancer Action in my city.

Anyone taking phenergan for nausea/vomiting?  I have been taking compazine and Zofran but they make me awful antsy.  A nurse friend of mine suggested asking for Phenergan instead of the compazine, that it has less effects on restlessness and such. 

I think my platelets are getting low   I woke up with a double nose bleed (way better than a double rainbow lol!) and have had some rectal bleeding, bleeding gums, and also some small red bumps appeared on my chest (petechiae).  Called the MO and they're having me come in for a blood draw and possible transfusion.  Argh, I was feeling better today too!

JenMas

I'm starting TCH this Thursday. I'm reading a lot about staying ahead of the side affects. I understand about water but am wondering how else i can prepare myself and what are the best things to have on hand. Any advice is appreciated.

manksy

Hi all. Beachlovinmom and mfml, next Monday 12/17 I'll be starting on the 4 doses of AC and 4 doses of Taxol (spaced out every 14 days). I'm BRACA1+ and got this diagnosis just the months after I turned 40 and I'm in great health otherwise, so I don't know if that played into the decision, as well, for my chemo plan.

I went to the dentist today just to get a cleaning and make sure everything looks good before I start chemo on Monday. The hygienist was lovely--and promised me that she would call to schedule a mammogram since it's been a few years for her. (I feel like I've become the postergirl for mammograms these days. I am alive--and will be for a damn long time!--because I had one at 40.) They highly recommended brushing at least twice a day and continuing to floss. Use a soft/sensitive bristle toothbrush. Use ACT non-alcohol dry mouth formula or Biotine dry mouth as often as I want. They also said make sure that I'm using something with fluoride every day. They highly recommended being pro-active about mouth sores. Also, no matter how much it sounds good to suck on candies (sugar or sugar free) they said DON'T--we are much more susceptible to cavities. So stick to water and mouthwash. And they also said I should call them with questions, as well, along the way--and they can write prescriptions or see me if I am struggling. So remember! The Onc is there--but so is your dentist, if you have questions. 

I love the idea of planning our summer vacations. And I know I need to find at least a few scarves or do wig shopping this week. Word is silk scarves are the most comfortable? Not cheap, but I figure it's Hanukkah, I can buy myself a present or two. Anyone find some pretty ones out there?

FriendGwen

JenMas - the only thing I did was get a gentle powder for constipation that the nurse suggested and put that in hot drinks for a couple of days post chemo. I believe it's taxotere that can make you constipated not to mention the other meds they offer. I also made sure I had baking soda as I'm swishing baking soda/salt/water in my mouth a few times a day. They should give you some scripts for you to use as you need them. I kept wondering if I was nauseus or not so twice I have taken a pill. It might be worth asking about heartburn as a few of us have that that too. And yes... water, water, water!!

Bren58

Sreiner, I have taken phenergan in the past and it has always helped my nausea issues. It does make me sleepy though (not a bad thing at night ). MO did not prescribe it for chemo SE's, but I might ask when I see him next week.

I hope you girls can et your wig expenses covered. My insurance would not cover any of my wig expenses and we have decent insurance too. But my neighbor and her extended family (all freinds of mine) did chip in and gave me money towards a wig. It covered all of it except a few dollars! It truly amazes me how kind people have been.

mfml

Hi Beachlovinmom - I would be interested in what your PS says ....  mine had been agressive with the fills to get them all done before I was too far into chemo - but maybe she went too fast.  Anyhow - today they took out 50 ml on the second "popped" side - said it doesn't look infected.  Have to go back Friday - may have to cut and restitch if it still looks yucky.  "Incision popped" is actually my description, BTW, my PS never said that.  She speculated a scab comin off????  I dunno - I thought they were great.  Although it all sounds gross - doesn't hurt a bit.  I'm sure many of you know - no feeling there..

Steiner - have you tried ativan instead of compazine and zofran?  Good luck at work tomorrow - I went today and felt just fine!  My goal was to get in a "real" week of work - there - not from home.  But the little TE problems have sidetracked me - have had to leave to go back to PS AGAIN.  I've had no meds for SE's today - just the claritin for the neulasta and a pepsid.  So - all in all I am very happy with myself...

I shaved my head the day after first chemo - I have 2 wigs - insurance covered $500!  I feel compelled to wear them since they were so expensive... but honestly the hats are most comfy.  I am wearing hats at home - I may try the hat at work tomorrow.  I just felt like my wig was crooked all day (I don't think it was...)

I am hearing alot about these mouth sores... I'm not having any problems at all - but I am nervous now that I should use the baking soda rinse anyway?  Do we know if it is preventative or just to treat??

Well - I hope everyone is doing OK.   I think someone else asked this... is chemo one a good indicator for the next one?  Maybe some of you who have had a few could advise?  I am happy that it wasn't as bad as I thought it was going to be - but don't want to get too relaxed about the next one... unless I should be relaxed about the next one!!!

Rest well and take care all!

M