January 2012 chemo

hotlyn

Hi all,

thanks for the info and helpful comments.

I will ring breast care nurse on Monday and talk to her about the different health problems I have and will bite the bullet and try the olive oil mouth wash. Got to say just the thought makes my stomch heave. Maybe just keep using the bicarb for my mouth and use the olive oli as a wipe on the corners of my lips where it keeps cracking all the time.

 Jenn .. I have had to stop wearing my wig, too hot here in Melbourne.. but that was something I really became aware off .. how much perspiration our hair picks up in this hot weather.. I just go bald at home and wear a short scarf.. the little one with ties at the back and  a brightly coloured purple barbie cap with  lots of different earings when I go out. Makes me feel bright and colourful .. way too hot for the wig. don't think I am ever going to wear it!

Regards

Lynne

kenyohunt1

Happy Birthday Lumpy!!!!!!! Enjoy your grandkids!!!!

Jennt28

Lynne, Luckily we have had a cool, wet summer. The temp hasn't been above 31 so not much of a problem so far. Very grateful that most of my txs will be in fall/winter :-)



regards Jenn

Jennt28

beckyv, I got the port the day before my first treatment but I don't have expanders (lumpectomy only). My port is on the other side from my affected breast.



One thing I did was draw with a biro along the edges of my sports bra before I went for the port install. Then I showed the radiologist the lines and told him he wasn't allowed to put the port between the lines. He was surprised at how organised I was (and a little impressed I think) and was happy to work with me to determine exactly where the port was going. We agreed on a position and he drew a cross so he knew where to put it during the surgery. I had just a local and the twilight stuff which really didn't work but I didn't mind being aware.



They left my port "accessed" so it didn't have to be needled again the next day. I went to work the next day as my tx wasn't until 3.00pm. It was fine. I had my stitches out a week agomand the two incisions are almost healed. I think it's taken a bit longer to heal because of the chemomeffects.



Jenn

ecpelkey

There is a magic mouthwash out there that has to be prescribed b/c it is a compound of MAylox, Ladocaine and Benedryl.  My insurance did not cover the compound and it is a bit expensive (not sure why) so, I opted for my MO's homemade recipe of 1/2 cap of Listerine, 1/2 cap peroxide, 1 tsp salt and 1 tsp baking soda.  It helps get rid of the sandpaper feeling and mouth sores.  Tast buds are still pretty much shot though.  I only did the olive oil on infusion day before and after.  I think around Day 4 after is when i got the sandpaper mouth.  I am day 10 now and feel fine...just the taste of food is off.  I do use olive oil on the corners of my mouth to help with the cracking. 

Janetanned

I experienced a strange event last night.  I am one week past my 2nd tx (AC).  I had the neulasta shot last Saturday.  I had no pain with the first neulasta shot and needed no meds.  I had no pain after this most recent shot as well.  At least I thought I was having no pain.  I woke up around 2am with a pulsing ache at the base of my back.  The weird thing was that it was not a steady pain, more throbbing. I couldn't go back to sleep, so eventually I took a pain pill.  That took care of it and it has not fully returned this morning.  I'm a little achy but not nearly as bad as last night.  Could this be related to the neulasta?  I thought it would happen sooner if at all.

Judy67

janetanned - one of the weirdest things about all of these SE's is how all over the board we are.  Some of us have more problems in one area and no problems in another. Even taking Claritin I have a lot of achiness with the Neulasta shot.  The second day after each of the 2 shots I've had so far, I wake up with swelling and achiness in my neck and shoulders.  Also have a pulsing aches and pains throughout my legs and joints.  Chances are your back pain is also from the Neulasta.  Hope it's gone now.  Judy

Kitchenella

Janetanned the pulsing pain was from the nuelesta.  I didn't experience it with my first neulseta but I had it really bad when in the hospital with low WBC and the shots they gave me there made the pain really kick in. Thankfull a doubld dose of Tylenol takes mine awa.

Peggy 

Kitchenella

I find using a "Whitening" mouthwash that has peroxide in it helps my mouth.  I don't know what brands are available where  ya'll are but there must be some.

Peggy 

rachelvk

Time to get caught up... definitely #3 has been the hardest for me, but still keeping that nausea at bay (had to take Emend, Zofran and Compazine so far to do that).

Jenn - I've heard summer is a hard time for the wigs. It's winter here (sort of...), and I've found that the wigs aren't nearly as warm as my own hair, but at least I can wear warm hats. Hope you can find some more alternatives that are comfortable.

Becky - The port placement was painful - just as a heads up. But you'll be happy you have it every time you go to chemo. I had just about gotten used to the TEs, and the port made me forget all about them for about a week. You may have a few twinges, but the port's not that bad once you get used to it. Great news on the wig! That's such an important part of making it through this whole thing. You might also look into the ACS' Look Good Feel Better program. Make-up and wig advice, and cool free samples! As for the meds, take whatever they throw at you and ask them if they don't offer. You'll get the routine down. Some come automatically (I always have to take the Dexamethasone and Emend, then the Aloxi and Benadryl come with the infusion), but those may depend on which chemo you're getting. Then if I still feel nauseous I take Zofran, and then Compazine if necessary. Definitely ask for the Neulasta and then take the Claritin that day (or even start the day before) and a few days after as needed. That hopefully may keep you from getting colds/infections/other things that could send you to the ER, which is not fun. Good luck, and just keep asking those questions.

Lumpynme - Wow! A move on top of all of this! You are one strong woman. Glad you had the chance to visit with the grandkids. And... happy birthday!!!

I think the drugs (or the ginger tea I just brewed) are kicking in. Stomach isn't so bad at the moment. I worked 7 hours yesterday, so maybe I pushed it, but I had a new radio show that was supposed to premiere tonight and didn't want to put it off, and I felt okay yesterday. I'm a little achey from the Neulasta, but like the early signs of flu - no sharp pains. My energy level is okay, which makes it frustrating. I'd love to get out and walk, but don't want to get too far from the bathroom. Aside from that, it will be a quiet day. Didn't sleep well at all - probably the steroids. I took my last one late (9 pm). Hoping everyone finds something to enjoy this weekend.

PCBarbie66

Definitely..our side effects are so very different yet weirdly common at the same time!! 

I also had the pain in my back last night and slept badly...  I find it comes and goes sometimes lasting for hours, other times for days.  Always comes when I'm in the chair for the AC, comes back from the shot several days later and lasts for about 4 days..then comes and goes when it wants day or night...I get 2 or 3 nights good sleep unmedicated...then 2-3 bad nights, sleeping 2-3 hours off & on, till I give up & get up.

Rachelvk~Sorry your #3 is the worst so far, I was really hoping it would be better, since were all getting used to the S/E's now.

I'm having a lot of Sinus issues, and was told that could be from the "C" portion of the AC..they put me on antibiotics, to be careful...and I thought they worked, but it must have been the steroids I went back on Thursday-Saturday...which also work as inflammation inhibitors & then the Claratin Friday-Wednesday, I was taking for the bonepain/swelling, by Thursday I could feel the Nasal pressure, running nose, Eye itch, sneezing 40x a day...anyone else with Sinus Issues???

As soon as one SE calms down...5-6 hours later another starts up...9 days after 2nd round and I'm too worn out to do anything today.

rachelvk

I had some sinus issues initially, but now it's mostly just post-nasal drip. I heard part of it is because you lose your nose hairs (mine are gone, I confirmed). I don't feel like my sinuses are as much a problem now, but I'm using a vaporizer at night to keep things moist and taking meds as needed. You can take Claritin and Benadryl at the same time if needed (I do Claritin daytime and Benadryl at night). Good luck with that.

I think I'll try to venture outside and get some fresh air. Then... a nap. 

annie3310

Happy Saturday, everyone. It's sunny and brisk here in Chicago and my partner and I got out for a walk. I have to say, though, that I seem to be suffering most from fatigue. Out of all the SEs I've read about, I don't want to complain too much about feeling tired. But it's there. This is day three after my first A/C, so I expect I'll feel better next week. I keep busy as I'm sitting down, and I definitely get up and move around as much as I can force myself. But it's really forcing myself. I truly don't feel like doing anything.



I'll be glad to get a handle on what my rhythm of SEs is. I have a novel coming out in March, with a number of readings and appearances lined up. I'm worried about how I'll do, particularly at my book launch on March 22. I figure I'll stand up there in my wig, maybe change it halfway through for a vaudeville effect.



Annie

WaveWhisperer

Janetanned, after my first Neulasta shot, I had waves of lower-back pain, just like back labor pains. I asked my MO the following week and she said it wasn't a common SE but it definitely could be related to the Neulasta. I haven't had that kind of pain since, even with Neulasta #2.

PCBarbie, yes, I've had sinus issues, too. I wake up about 3-4 am many nights with really bad sinus aches around the bridge of my nose. I'm using a humidifier but often have to get up and take pain pills. 

Hope everyone has a good weekend. 

Jennt28

rachel - sorry to hear you're not feeling good. Hope it improves quickly!



annie - a NOVEL with a launch and marketing? Congratulations :-)



janetanned - hope the bone pain clears quickly. My onc doesn't believe in giving the neulasta unless it's necessary. I've only had the first tx so far and over here they don't do nadir bloods so I won't know what my lowest levels were and I won't know if my levels will be ok for the next tx until I get the bloods done on Wednesday before my onc visit and tx this Thursday.



Hoping my levels are ok. I certainly don't "feel" like they would be bad and have had quite good energy and no infections etc.



Jenn

hotlyn

Morning all,

Hot Sunday morning here in  Australia. The olive oil for the cracks in the side of my is working so thanks for that .

Regards Lynne 

Deb267

The olive does seem to work the first tx my mouth was a mess and ashy taste. this time I used the olive oil I did not like the taste so I got a Ginger and orange infused oil I swish for about 2 min and spit it out. It really make my mouth feel better and my taste comes and goes but not near as bad as last time. I use it whenever it starts burning, feeling sore.

Jennt28

Oh for heaven's sake - haemarroids - and I'm not even constipated!



Chemo - the gift that keeps giving :-/



Jenn

Janetanned

Jenn - I feel your pain - literally!  I had some problems related to hemorrhoids during the first round.  My poor bottom!

No bone pain tonight - but now I can't sleep!

DianeNMil

Barbie - I thought I had a cold but now I am wondering if its a SE.  Sinus pain, running nose, bloody nose.  Isn't this fun???

I had my second infusion Thursday (I am on weekly schedule) and Friday I was flying from the steroids!!  At least I got a lot done.  Worked a half day, went to hospital for wig fitting (hate them), went to sculpture studio to finish welding a sculpture!.  Slept horrible that night and the next day...thought I was hit by truck!!  I was sooooo sick yesterday, felt like flu....very week, achy, tired.  Wonder if this is what I will have for the next 10 weeks.  Or will it be 2 days after treatment each week??  Today I feel better...not 100% but better.

Oh and I guess I don't get neulasta.  If I need it I get a faster acting version(forgot the name) since I am on a weekly schedule....anyone else???

DianeNMil

Last night it kept feeling like things were crawling in my hair!!!!  Yikes.  Am I losing my mind or about to lose my hair???

Kitchenella

What happened to FLDREAMER?  I just realized I haven't seen any of her posts lately?

Peggy 

CharB22

Today is day 4 after tx #2 and I feel much better than yesterday - felt "off" - slept a lot, was groggy, kind of queezy, just not quite right. Fortunately, I'm feeling better today, but my hair has started to fall out. Finally showed DH my wig last night...to which he said, "What? You didn't go blonde like I asked? LOL...we started laughing and then I started crying..." I hate this! I've been very weepy but trying to hold off on the Xanex...I'm taking so much other crap.

Wishing everyone a SE free day!

Janetanned

I hate wigs! Well, hate is such a strong word.  Ok, I despise wigs!  There, I said it.   Weeks before I needed one, I tried on and bought a nice wig from a wig store near me.  It is passable, but not perfect.  I just completed one week of wearing it to work and out shopping.  In that space of time, I managed to totally freak out one of my students who just couldn't get used to my new look.  I needed to meet with him in private and explain what was going on.  I have kids looking at me like I'm near death.  I guess they figured it out.  I also upset my bagel lady!  I stopped in to pick up a large order of bagel for work on Friday morning.  She remarked on my 'new' hair style.  I was caught off guard and told her it was a wig - that I'm in the midst of chemo.  I feel like I have to explain to everyone that its just a wig and I'll have my hair back some day. 

Last weekend I bought a wig from wigs.com.  It came yesterday.  It is hideous!  I can't imagine ever wearing it.  My daughter and I got a good laugh out of it though. Off to find some better alternatives to hair.

CatWhispurrer

I'm on day six after first A/C and I'm following everyone's trials and tribulations.   I think I am doing pretty well although I feel very "off" and out-of-it.  I am not even sure I should be driving the way I feel.   I have a foggy head, sore throat and my whole skin hurts to the touch.   I'm sure irritable too so my poor hubby is getting snapped at.  I feel that I am just trying to survive and dragging through every day.   I hope it isn't this way for the next few months.

My taste buds are starting to go out of wack so will try the olive oil.   Hang in there everyone!

annie3310

CatWhispurrer - sounds like we're in similar places. I'm on day four after first A/C and feeling lots of fatigue. Just kind if out of it. Also hit today with the constipation woes, which really isn't a small matter, now that I understand the discomfort more. Woe is me. I'm hoping things will start turning around a bit by tomorrow and I'll have more energy.



Annie

NancyHB

Cat and Annie:  I am day 10 after my first AC treatment, and I am finally feeling "normal" again.  I thought I was feeling good the first few days, probably because of the steroids.  Was very tired and had that slightly "off" feeling, couldn't put my finger on it, but I didn't think I was having any significant SE's (except for a few days of constipation).  I expected to feel so much worse.  I finally fell apart this last Friday morning after waking from a horrific nightmare at 2:30 in the morning (thank goodness my husband is a therapist; he's saving me so much time and money!)  After a day of skipping classes and spending time on the sofa reading and drinking tea, and sleeping in this morning, I feel so much better.  I actually went to the gym and ran, then rode the bike, then went swimming with my granddaughter. 

Take your time, and take care of yourself.  My first suggestion would be to sleep when you need it - and sleep often.  I was sleeping too little (going to bed at 9 pm, waking up at 3 am/4 am every morning) and working too hard, and it was taking a cumulative toll on me.  We are probably all so good at taking care of others, but feel guilty about taking care of ourselves.  I feel lazy when I need to sit down or go to bed early, but I have to listen to my body - it will tell me what I need.  

It does get better - there are a few days for me before my next treatment (on Thursday) and I'm kinda sad about having to do it again because I know how I'm going to feel - but I'm trying to remember that this will mean I'm half-way through the AC treatment (finding a silver lining somewhere).  

Take care of yourselves, and I hope you feel better soon.

Nancy

ecpelkey

Janetanned: I hear you about the wigs.  I had a horrible experience.  I went to a shop and tried one on that I liked (which was the store model b/c it was a lace front wig)  The color was wrong, but it fit grreat.  The lady that worked there said she had one in my color.  I was excited and bought it, but first asked if I could try it on.  I was told no and assured that it was exactly the same wig I tried on....
Well, got home with it and there is about 2 inches of extra fabric on the inside making it bulky when you put it on.  The asian guy that runs the store would not return it or exchange it and said i needed to use the combs.  I told him I was NOT going to have hair for the combs.  I pitched a huge fit trying to return it and they never would. I even tried on the "store model" versus the wig I bought to show the difference, but NOPE.   I have it (stuck with it) and it looks great on my husband so I have Halloween 80's costumes in mind now. 

This weekend I ended up in bed all weekend.  Running fevers, chills, body aches.  My fever hit 101.9 and the doc called in Levaquin (antibiotic) to keep me out of the ER yesterday.  I feel a lot better today, but I have a cough...more than likely from my 3 year old that woke up in the middle of the night coughing and fever the other day.  I have to say it was a rough weekend.  I am definetly considering the Neulesta for the next infusions.  My problem now is my cough is a tight cough.  I have an appt with my MO on Tuesday, but I am going to call tomorrow to see if I should come in earlier. I hope none of you ladies experience the weekend that I just experienced. 

CatWhispurrer:  I am from Powder Springs...i have family in Douglasville and Carrollton.  i hope you get to feeling better.  

annie3310

Nancy - glad you're feeling better. You're slightly ahead of the curve from me, so I'll hope to follow your path. I'm doing an excellent job of letting myself rest, but it does seem to require a huge struggle to really believe that's okay. Tomorrow I'm hoping to get out of the house and do a little more. Tuesday, it's wig shopping!!



Annie

Gayle56

ecpelkey - So sorry you came down sick.  My daughter had a sniffle last week that she passed on to me but fortunately it didn't turn into anything more.  Hope you feel better.

DianeNMil  My scalp has gotten very itchy - but so far my hair is staying intact.

 Janetanned  I am not crazy about any wigs I have seen.  I have ordered 2 scarves to wear in case I need something before I resolve the wig issue.

Gayle