January 2012 chemo

JoyceNYC

CharB22, I would love to have that list of food/spices.  Anything that will help....

three17, welcome to the group (but sorry that you need to be here).  If you haven't read about it yet, try a claritin to help with the neulasta pain -- it worked wonders for me.

 Glad to hear most of us are hanging in there; I'm off for round #2 tomorrow!

Janetanned

Hi Three17!  Welcome and sorry you find yourself here.  Looks like we will be subjected to the same tx 4dd Ac - 4dd T.  followed by rads.  As mentioned, many find that claritin helps with the bone pain.  You might want to try that.  I see you are a Philly girl.  I'm being treated at HUPand live in the burbs.

Momof2inME

CharB22,

I too would like the list of food/spices.

The nausea has been debilitating both treatments. I will try anything. HUGS!!!

Deb267

Erica the rash followed the vein from injection site about 6 inches up it did not start until day 7. Looked poss phlebitis but none of the symptoms then turned to bumpy itchy rash. Now it is purple and flakey. Not the usual acne and body bumps.

Patty try the claritin it does help. The 24 hour generic works as well as brand.

Rachel I used Sally Hansen hard as nails base and ice this time. Also trying the olive oil swish I lost my taste within a few hours this time but after the swishing it seems to be coming and going it must be helping last time when it left it did not come back until three days before the next tx. Fingers crossed the taste thing really works on me. I usually eat one meal planning the next.

Shell-Seeker

Hello everyone,

I hope your all doing good.

I had my second AC infusion today and had a little bump in the road. First I found out my nuetrafils Part of the white blood cells) were very low. Mine was 24 and normal is 40-70% I asked him how low does it have to get before you wont treat me. He said I was right on the line. Any lower no treatment. I dont get Nuelasta shots and I wonder why. Then my port clogged. They tried Heprin and that didnt work so they put the "drano" stuff in it and I sat an hour and when she tried again, thankfully it worked. Second infusion and its already clogging. Not good. I took my cumidin every night so I dont know. I sure hope I dont spike a fever. He said call at any sign of an infection. They said to take my temp 4 times a day and be careful not to be out around viruses and infectious people. Weird this is, I felt pretty good. I wouldnt have thought it was low. Does anyone have knowledge on this?

rachelvk

Shellseeker - When I wound up in the ER with a fever and low wbc after my first tx, I felt just fine, so there really is no way to know your wbc is down until something catches up with you. I don't get my wbc checked except the day of my tx, so I went the entire 2nd tx not knowing - but apparently not getting sick. My wbc was at the upper end when I went in today. I'm surprised that with a low wbc, they're not giving you Neulasta. Definitely ask. There is just so much risk of getting sick, leading to other complications, that it doesn't make sense not to give it to you. Sorry about all those other issues. I hope you can rest and have an easy weekend.

My tx went well, but I'm tired. Wearing the PJs and curled up in bed. Have a good night everyone. 

annie3310

End of first day after first A/C infusion. I went back for the neulesta shot this morning. So far, so good. I definitely felt tired today, but no nausea. Now I'm worried that I'm babying myself. I stayed home all day - probably waiting for something bad to happen and nothing did. I see that many if not most women are working. I'm a real estate agent and it's very hard to plan anything in this line of work, but I've arranged for back-up if need be.



Hopefully, tomorrow will go as well. I'm not sure why people wouldn't get the neulesta shot on a dose dense regimen. I wasn't even given the option.



Wishing everyone a manageable SE day tomorrow.



Annie

hotlyn

Hi all,

Sorry I have not post hardly at all as with all my other health problems have found the chemo ride pretty hard. I am now day 4 after second infusion of FEC. So again have sore thoart, cracked lips ( this has not gone away from last time), putting Kenalog on them and it helps but the corners just keep cracking now no matter what. Any fix ups any one knows?? and then today I rang GP to get result re   blister (down there, sorry!!!) that I had on Monday has come back as type 2 genitel herpes!!! does any one one know any think about this ???? He had given me tablets and cream and all is settled down now. He said to tell the onc people at next visit , that it is something that happens with low immune system... but now I'm concerned about long term stuff, does this mean I have genetil herpes for erver or what, any help or info gratefully received, Oh and if  any one remembers  I fell on News years Eve and bruised myself all over. Left knee  is still very sore so had xray today... get result next week, gee I hope there is nothing wrong there as well..

bye for now Lynne

Janetanned

Lynne - I'm sorry to hear about you SEs and sore knee!  You have had quite a ride recently! The herpes outbreak makes sense.  Herpes (cold sores etc) seems to break out when a person's immune system is down.  There are some good antiviral drugs to address this (acyclovir?). I wonder if this makes us more susceptible to shingles etc?

Nico1012

hotlyn ~ So sorry to hear about the se's you're having. The only se I had that was similar was the cracking in the corners of my lips and Vaseline worked really well to  clear it up. Hopefully someone will be along to offer advice for your other se's. These boards are a wealth of information and our bc sisters are always willing to guide us when they can. We really are fortunate that way! Best of luck to you on your journey.

Nico

NancyHB

Lynne:  Sorry about the SE's.  I carry multiple tubes of Burt's Bees (chapstick) with me and use it incessantly.  It's winter here in Michigan and our air is very dry right now.  I notice I'm having trouble with my mouth being dry, no matter how much water I drink, and I've developed a couple of mouth sores.  I've been worried about cold sores; I have gotten them since I was a child and am waiting to wake up and find one (or more) on my lip.  Herpes tends to "flare" when our immune systems are low or compromised, even when we've never had symptoms before or didn't know we had it.  I'm sorry you're dealing with this new information on top of everything else, but herpes is treatable.

Annie:  I felt so great for the first few days following treatment that I think people doubted I was having chemo!  I hope you keep feeling great!  I realize now, Day 8, that it was likely the steroids helping me along.  I didn't have a "crash" when I stopped taking them on Day 4, but I think rather I've had a "slide", ending in today waking up (at 2:30 am) to a runny/stuffy nose, headache, and sore throat. I still feel "good" - way better than I ever expected - but the general malaise and crap feeling is starting to bug me a little. 

NancyHB

CatWhispurrer:  Thanks for the heads' up on the L-Carnitine and Q-10.  I decided to mention my heart flutter to my MO when I go in for my next treatment.  My husband talked me into running about 18 months ago, and I've been doing yoga for the last 4 years; somehow, I must have known I was about to face a battle where a strong heart would be required.  I'm part of a clinical trial and they're monitoring any supplements I take, so I'll definitely ask about them!

NancyHB

Momof3boys and Janet:  Thanks for the info on the low WBC and heart beats.  It doesn't happen often, just enough to scare the sh*t out of me.  Foolish me, I really thought I'd be able to continue exercising just as I had before, without consequence.  I ran 2+ miles the day after my first treatment and it was easy.  Two days later I tried to run a mile (after biking 6) and got nervous.  I haven't been able to get to the gym this week at all (work and school and life got in the way, plus I'm exhausted at the end of the day) so I'm going on Sunday and will see how it goes.  I guess I need to give myself permission to take it easy (always easier said than done, right?)

Kitchenella

Shell Seeker I'm not sure how this translates but when I was at ER with low WBC my WBC was .06.  Normal is 3.6-10..0. Neutrophils were 5.20.  Normal is 50.00-75.00.  When I left 4 days later I was at  18.2 WBC and 74.00 Neutrofils were up to 74.00.  When I went in my temp was 39C.  My gums felt like all my teeth would fall out and my mouth was full of thrush.  Within a day I was feeling pretty much normal. Just tired. I hope all your issues resolve quickly.

HotLynne. I also use the Burts Bees.  So far the rest of my skin is just its normal dry.  The Herpes thing is troublesome. Hope it won't be with you forever. 

So far I'm doing good on my day2x2.  I'm on the steroid high.  Buzzing around cleaning and getting ready for our Sabbath.  I'll rest then.

Peggy 

kenyohunt1

Urinating blood WTH. Anyone else!!!!!!

CharB22

Shell-seeker - My WBC was low after my 1st tx. I had my WBC level checked a week after tx. I ran a low-grade temp (99.4), called the doc, and was told they weren't worried until it went over 100.4. I just stayed in bed and rested. All of this and I had the Neulasta shot. I had WBC checked again yesterday before 2nd tx. Up, so I could get my AC. I go back today for Neulasta shot. My port was clogged yesterday, too. Worked for the first 2 bags (saline and anti-nausea meds), but clogged before given Red Devil, so had to have the draino stuff and waited 30 minutes. Fortunately it unclogged, but I was really tired afterwards - I was at the infusion center for over 4 hours. Had to take a nap when I got home.

NCbeachgal

Kenyo-call your Doc immediately! The pink/red color of your urine could be from the Adriamycin, if that's part of your treatment. Take care though and call right away.



Hello everyone, I'm now day 3 past AC treatment #2. I am happy to report that I haven't had nausea this go round. I'm not sure if it's the Ativan or the acupuncture, maybe both. Right now all I feel is constipated and tired. Im taking Colace and Miralax. I'll be having a fruit smoothie with flax seed added later. That helped with constipation last time.

On another note, my hair is falling out like crazy. Is it crazy to say that it kinda hurts? I'm keeping it in a turban so my loose locks aren't all over the place. I had my hair cut short right before my chemo, hoping to make this process easier. I've read that many of you have shaved your heads at this point. Did you do it with an electric razor that left stubble or did you do it with shave gel, water and a razor? I also wonder how long it will take for it all to just let go on it's on. This part really stinks but at least I'm not nauseated on top of it! Any encouragement and suggestions would help.

Take care of yourselves today!

Angie

Kelloggs

Angie - my hair started falling out about 14 days after my first tx.  My scalp itched and hurt....kinda the feeling you get when you've had a ponytail in all day and take it down.  I nursed mine for about a week and then shaved it with an electric razor.  I cried the entire time but it's been gone for a month now and I've come to terms with it.  Good luck and remember....it WILL grow back! {{HUGS}}

annie3310

Angie - I had acupuncture during my first treatment and I wonder if that's partly responsible for me not having nausea either. That was what I dreaded most, so I'm relieved so far. Regarding hair, I'm already booked to have my head shaved on day 13 after my first treatment. Every source seems to say it's day 14 when it starts coming out in earnest. The wig place I'm going to is going to shave it and then fit the wig. I'm completely dreading this also, but this whole cancer process is a series of submitting to things we just don't have any choice in. It's humbling, but living is a pretty strong motivator. 

I just forced myself out the door for a walk. It felt good, but I'm glad to be resting again. I don't feel too bad on day 3, just tired and "off." Hard to explain to people. I feel lazy and that makes me feel guilty!

Annie 

CharB22

Angie - thanks for posting the hair question. I'm on day #2 after 2nd AC, and so far, I still have all my hair..of course, I'm only washing it about every 3 days - I got it cut very short before treatments started, but I'm still not ready to lose it. I thought I would be okay with it, but I'm actually dreading it. Oh well....not much I can do about it...just surrender.

Lumpynme

well i'm feeling invisible and confused- had to re-wrap my head around things--

wednesday's MO appt sent me to a new surgeon (in Ohio)-MO wants surgery first before chemo--surgeon sent me BACK to MO as he concurs with my michigan surgeon to chemo first to reduce lumpy's size....so am back to MO on tuesday next week-1/31--may have first tx then-not sure...we never discussed "the plan" at all---- surgeon did address possibility of port, etc.

yesterday had bloodwork drawn including iron since i am a gastric bypass person -traditionally iron levels low by 5 years out and i am approaching 8 year anniversary. a new mammo and CAT scans are scheduled for 2/7...

so much to get my head together between all of this and moving and unpacking etc etc-- trying to make sense of life in this horrid apt and make it cozy and "home"

ok - done whining,,,,,

on a positive-tonite i get the opportunity to babysit 2 of my grands....my daughter will be there as well cuz they know their aunty robyn while they really don't know their nonnie margo.....

and tomorrow is my birthday!

rachelvk

Kenyohunt - It could be the Adriamycin if it's light red or pink. Or could it be your period? I got my period a week early and so heavy that it spewed out when I went to the bathroom (sorry if TMI). Check with your MO and then your gyn if necessary. I'm sorry you're having all these other things crop up. Chemo can cause so many of our regular health issues to spike on top of all the 'normal' chemo SEs. Not fun. I second the recommendation of Burt's Bees - I use the pomegranate lip balm and it seemed to get rid of the lip cracks - also use Neosporin or Bacitracin in the meantime so they don't get infected. My boyfriend put together a Burt's Bees carepackage for my birthday and I'm loving all of it. The cuticle cream also works well on fingertips if they get cracked. That and plain old vaseline. Sending you healing vibes.

Annie3310 - If there's every a time to baby yourself, now is it. Rest, relax, and don't push yourself. Your body will thank you. It's great that you've got a back-up lined up at work. Work is the most frustrating part of this - I've had a lot of pressure, but I'm also finding that I'm forgetting things because I'm rushing so much. Time to slow down and even hand things off if necessary. And yeah for that walk!

Angie - Yeah for fewer SEs! I wish my insurance covered acupuncture - they'll only do it for 'chronic pain.' But so far things have been tolerable. I hope you continue to have an easy go of it. As for the hair - I'd say go with the electric razor. You don't want to risk nicking yourself. I had my hairdresser come over, but she couldn't get herself to shave it off. She clipped it really short, which has been interesting. I probably have the same amount of hair that I did when I was, well, maybe at 6 months old! Just whisps here and there, but boy, those strands are sticking in. I'm glad that the longest lasting hairs are in front of my ears and at the back of my neck, so they show when I'm wearing my hats. Wishing you great looks with wigs, hats, scarves or whatever you go with!

CharB22 - Hang in there with the imminent hair loss. It's hard, but you'll find a look that suits you. A lot of women I know loved going commando; I've just relished in all the dangly earrings I have but rarely wear. And there's some relief in not having bad hair days - just pop the wig or hat on, and I'm set. And I can shower at night and not have to worry about going to bed with wet hair. 

I went to sleep at 8:30 last night and (excpet for 6-7 bathroom trips) slept until after 9. I'll go for a walk if the rain slows down, or just go to work and take a break to walk around the halls if necessary. Mom's doing the laundry, and she'll probably go back to CT after I go to work. Then it's the BF's turn to take care of me for the weekend. Good luck all. 

Have a good weekend, all! 

ecpelkey

I have to say today is the worst I have felt.  Temp is 99.9 and I keep having ovualtion twinges.  I left a message for my MO.  I figured I overdid yesterday b/c I raked a portion (small portion) of my yard. I have been drinking a Boost every morning.  Have any of you had those.  They aren't  bad (well, the chocolate ones anyway).  My aunt had to take chemo dugs for another illness and they helped her.  Just thought I would pass it on.  Also olive oil in the cracks of my mouth have helped with the cracking.  As soon as I felt it starting, I started putting a little bit on.  Hair is there but OILY...I have never had such oily hair before...Just chalking it up as another SE. 

Kelloggs

Lumpy - welcome to Ohio!  I live about an hour south of you in Canton.  I'm sure it was very hard to move in the middle of the cancer mess and having to change doctors adds even more stress.  Don't forget in the midst of it all to rest and take care of yourself!  Enjoy your grandbabies....how wonderful you are close enough now so they can get to know nonnie margo!  Have a great weekend.

NCbeachgal

Thank you Kelloggs, Annie, CharB, rachelvk! I just sent my friend a text to head over with her electric clippers. This is one problem I need to handle before it starts to handle me!



Lumpy-happy birthday, enjoy those grandkids! It's great you are getting second opinions from various surgeons and oncologists. Ask as many questions as you can think of! If your cancer center offers breast cancer nurse navigators, call on them for insight. Good luck with the decisions ahead. I'm sure, with the guidance of your care team and your gut, you'll make the best choices for the desired outcome. Life... Low risk of recurrence! All the best to you on your birthday!

Nico1012

NancyHB ~ One of the things that helped my dry mouth during chemo was Biotene Gum. It's not easy to find, although WalMart now carries it and sometimes Walgreens. Also drugstore.com   It stimulates saliva production and it's very soothing to the mouth. The other thing that helped was anything "lemony". Lemon drops, lemon water, etc. Hope you find some relief from one of these!

Nico

PCBarbie66

Lip Balm~I use "The Naked Bee" lip balm, was given to me at X~mas in preparation for Chemo..my cancer buddy recommended this to help with the Chemo cracked lips and splits, as it worked for her...she bought it online..but when she gave me 3 I knew I was in trouble!!
Head hair~pizzie pixie cut day 2 as it was elbow length (preemptive strike)...partial shaved Sunday morning day 18, hurt too bad by that day, was sleeping with a hat on to not move the roots in my sleep~a little longer than Jen's FB Pics. Thanx for showing us that...it helped me shave it the rest of the way today day 23. Remaining Hair hurts my head too much and it is falling out in patches to the skin...and with dark hair that looks horrible to me. The 2 razors I own will not cut it as close as Jens final photo...going to My Step Mom's (hairdresser) she has the ultimate set of tools . Day 18 was the day it really started falling out...not much warning, just spiky-skull pain, and tingling before that.
Metal taste~not on first Chemo...2nd session started 5 days after...
21-22nd day Tea tastes like crap now by day 23 today.
Sore throat~yep..I get that about 7 days after Chemo. Went away before the next Chemo and then came back, right on time.
Sores/rashes~I have these little bumps that show up around day 5, itch like mad and then start to go away before the next round of Chemo...lasts about a week.
Tongue/Mouth~better Tongue still swollen, lips and tongue slightly numb and inside mouth tender..but all in all it is MUCH better this time...I attribute that to the Olive Oil wash I do every night before bed..along with my Baking soda/Salt/warm water mouth wash after I eat.

Done with book for now...going to become Yul Brynner..grew up wanting to be the teacher..who knew I would be the King!

Jennt28

Erica I hope you feel better soon!



Hi everyone, It's already Saturday here and I decided this morning that today was my morning "off" from my power walk/jog. I had a fullday at work yesterday. I felt pretty "normal", full of energy and got lots of work done. It felt GOOD!



Still getting used to wearing the wigs and since it is summer and quite humid I have learned very quickly how much perspiration my hair obviously used to soak up. Thank goodness I got a few wig caps that can soak up a bit...



If anyone missed out on seeing the family "shave mum's head night" pics the other day here is the link again below. Head feels so much better without my hair itching and scalp hurting (just like the ponytail let down pain).



THE HAIR JOURNEY

http://www.facebook.com/media/set/?set=a.10150414653061560.359270.506521559&type=3&l=71ae211509



regards Jenn

beckyv

What experiences has anyone had with getting a port and having tissue expanders?  I get my port on Monday and had my last T/E fill last week - so they are extremely uncomfortable right now.  It doesn't seem like there is very much room underneath my collar bone and the tissue expander for a port.  But I guess the docs do this all the time - so I should quit worrying and let them do their thing.  My first A/C is on Tuesday - and while I am not nervous about that day - I am so nervous about the S/Es - how many and when they will hit.  I want to try to work as much as possible.  I did get a wig today - so I am prepared for that.  I was very fortunate to find a wig that looks almost exactly like my real hair (which I got cut short about a month ago in anticipation of what is to come).  So much information - trying to decide if I should try everything - to do my best to avoid S/E (like the olive oil, claritan, alleve, benedryl)  - how do you know if it is too much?

Judy67

Lumpy -  Happy Birthday!  Hope you start to feel more at home in your apartment.