Starting Chemo in March 2014

Jenwith4kids

I am always hungry too!  I think it's the steroids...  I just have to be careful because I am getting heartburn.  But I started prilosec-otc a few days ago which controls it during the day; though at night I'm still popping a pepcid before bed.

WifeWBC

well - in the end, my wife was back on her feet quicker by a day over the last round, but the truth is she felt much worse throughout.   Day 8 she was feeling better.  Day 9 (Sunday) pretty much back to normal.  Will probably tell MO to change the nausea meds to stemetil as the zofran and maxeran never cut it.  Wife was zonked right after her treatment, and never surfaced till Monday (day 3), and only short time.

No matter, she's back to herself and bawling at me and the kids.  Our 10 year old ran away from home today.  She left an angry note, apologizing for shouting at us, but insisting she had to go, but will miss us still.  I found her about 100 yards down the road in some trees crying after she'd been gone 15 minutes tops.  Then my wife took her and her sister to piano.  My boys had beavers. 

Seems wE will have one week of madness and 2 weeks of normal whilst on chemo a go go.  That seems to be the process.  Hopefully the docs can improve my wife's response in round 3.

WifeWBC

couple of questions - wife has been wearing the white hat you see in her pic left.  When she took it off today it had left indentations and her scalp was tender.  Anyone doing anything for this?  Are silk scarves better, less abrasive on the scalp?

Second, thought I read somewhere of a med you can drink to coat stomach, throat, mouth to help avoid mouth sore symptoms.  Wife found she was able to be more fastidious with her oral care during round 1, but this faltered in round 2, and she started feeling some mouth sores by day 6-7.  Thought I read of some med you could gargle and swallow to coat the digestive tract.  Anyone?

Finally, anyone have trouble holding water down?  Wife can't stand the taste it seems, and hard to keep herself hydrated.  Any alternatives being tried?

Have a great week all.

jmg58

I haven't had any mouth sores yet (5 days of out round two).  I brush and rinse with Biotene, saltwater and baking soda solution, and I have Nystatin (or Rystatin, can't find it right now) to swish and swallow around for thrush.  I haven't had any mouth sores at all.  I haven't had any of those problems with my hats, I wear one similar, but mostly soft caps that don't tie in the back.  None of them have been very tight...I got mine from headcovers.com and also tlc from the American Cancer Society. I'm so sorry about the 10 year old...that's got to be so gut wrenching for you and her....this is hard on everyone.  I hope things get better! 

Sinsin

WifeWBC, so sorry to hear about your wife's troubles. My onc and pharmacist says to keep a journal of side effects because it would be pretty routine what to expect after each infusion. Sounds like you guys are starting to figure out that routine and hopefully can help make it a smoother time adjusting. As to mouth sores, I've read lots of suggestions in other threads of items and mouthwashes to use. Ask your oncologist and they'll be able to get what you need.

As to hats, I've been wearing hats I already have and scarves. Scarves seem to feel better on my head but it takes some time figuring out ways to tie it. I just did a Google search and there are lots of videos showing different ways to tie head scarves. My hospital/treatment center has a cancer boutique/store that sells hats, scarves and other such useful items for cancer patients. I also made an appt with the boutique part and they helped with wigs, prosthesis, and bras and provided a free wig, bra, and prosthesis. They're all used items donated by other fighters but they're sterile and free which helps tremendously! I suggest inquiring if your treatment center has such a program. 

Hope everyone has a side effect free day tomorrow!

Sinsin

Was wondering what my darling hubby was doing after we tucked our kids in bed. I nearly cried when he came down the stairs. 

1knightsjourney

wifeWBC I am using a prescription called "magic mouthwash" to control mouth sores. It includes a numbing effect and other things to prevent and sooth the mouth and throat. You swish it around for 30 seconds and then slowly swallow it. It is helping me. 

I start round 2 tomorrow. The 1st 2 weeks of round 1 were rough. I apparently get the entire list of side effects and felt like I had a terrible flu with bone pain, disturbed sleep, dehydration, my WBC count hit 0 and my hair is gone (which actually feels kind of liberating (I have cute pics on my blog  ( 1knightsjourney.com ) of my kids cutting, shaving and coloring my hair red, blue, purple and green!). We are going to try doing more to manage the SEs this time, but not looking forward to going through this while my 8 & 10 yr olds are on spring break.  

Kazzy115

Sinsin - what a great picture of you two.  And an incredibly moving gesture.  So glad to see you have such great support.   Wishing you a wonderful day and thank for the smile!

1knightsjourney

jmg58.  I also became really dehydrated when my WBC count hit 0, and I went in twice for fluids. This round (today) they will give extra fluids and more fluids tomorrow with the shot. The steroids are making my heart pound like crazy, too. I am also taking a heart pill to increase the blood flow the gets pumped out of my heart (for low ejection fraction number), so sometimes when I lay down, my heart feels like it's doing somersaults. They gave me Ativan and ambien to help me relax and sleep. Last round my sleep schedule got messed up. 

I'm taking the hair loss well. Once it started coming out in clumps, I let my kids shave it and color it. The tingling, itching and getting hair everywhere was so unpleasant.  My 8 year old shaved part of hers in support! It feels great (tho my head gets cold!). I have one favorite stretchy news boy hat that I'm wearing from TLC.  No intention to wear wigs, but I have a friend who does henna tattoos, so I'm going to do that when the weather warms up and I can get back on my motorcycle. Figure it'll be badass! 

1knightsjourney

wifeWBC another good t-shirt 

Generation3

WifeWBC,

I, too, can't stand the taste of water since starting chemo.Sucking on ice is a little better. Got dehydrated the first round pretty quickly and had about 5 bad days before starting to feel human again. This time around, the day before chemo I made myself drink 64 oz. of liquid(lots of milkshakes). Then on chemo day, day 1 and day 2 before my taste buds got so bad I made sure to drink at least 32oz of whatever I could. Ginger ale is currently working well for me now. Ginger is supposed to help with nausea as well. This go round, #2,  so far I've only had one really bad day. I've also taken the nausea meds around the clock instead of waiting for the nausea to hit. By then it's too late! Good Luck

Jenwith4kids

I'm a little sick of water too, been drinking juice...really don't need the calories, but seems to be the best way to keep drinking.  I also have been drinking sparkling spring water (lemon) and gingerale.

I take the nausea meds whether I need them or not through day 5 or 6.  This is my second round of AC, it is day 6 and seems that the only lingering side effect is exhaustion.   Oh, and I am cranky as all get out and glad the kids are going back to school tomorrow. 

Take care everyone. 

Jen

Sinsin

really fatigued today and it's my off week. It's 11:00am and I'm back in bed. I've only had 2 infusions thus far (Epirubicin and Cytoxan). Anyone else getting fatigue like this on their off weeks?

Xrayalli

Water was so much easier to get down before chemo started! Now I have to flavor it with those flavor drops, drink Sobe water and sometimes iced tea tastes okay. Drives me nuts because I never had a problem drinking water. 

jmg58

Xrayalli, how much fluids do you try to drink a day? I don't have
problems with the taste, I am just sick of drinking water. I try to
drink at least 4 17 oz. bottles a day and then supplement with
popsicles, milk and soup, but it's never enough! Going for more fluids
tomorrow by IV. Heart beat so strongly for about three minutes this
a.m. I thought I would pass out for sure and fall on the ground. Then
it seemed to pass. Weird. Cancerjourney, it's interesting that you're taking a pill for this.  They hospitalized me for it but only gave me fluids.  That only works a couple of days.

I also enjoyed seeing the recent pictures....it's nice to see who we all are and your smiles!  

This is a photo of me from my own photo site that my boyfriend took the day of chemo when we went back to the hotel and he tried to cheer me up with gelato.  It pretty much worked.  *-)

CaliKiwi

Summerwheat - you were literally 10 minutes from my place! Hope you like the mission, San Juan Bautista is such a cute little town.

Today I wore one of my wigs out for the first time.  10 minutes in I wanted to rip it from my head. It was so hot and uncomfortable. I kept it on for the 2 hours I was out, got home and ripped it off as soon as possible.

jmg58

kiwilady, I know what you mean.  I tried my wig on finally yesterday.  I didn't like the way it looked at all (I can't seem to style it as naturally as it was done in the salon---after being in a bag it looks really bad).  I went out with a cap.  I wonder if I'll ever wear it at all.  Maybe I'll try again when I have a half hour or so to work on it.

MJHJAN1014

I haven't made friends with my wig at all. I liked it in the salon, and wore during the 40 minute drive home. I came in the house and ripped it off immediately. It is so itchy. I haven't worn it since. I have been using scarves and "abbey" caps that I got online. So much more comfy.

lgoldie

Tomorrow is my last AC.   In two weeks start Taxol, Dose Dense x 4 every two weeks.  Onc Nurse told me she thought I would have an easier time with the Taxol.  Ok, I'll take it.  Last AC round I had nausea..it was my first time.  Horrible.  My birthday was the night before and I ate a bunch of crap...Panda Express, Birthday Cake, Fish Sticks....  So today, soup and crackers only and no breakfast.  Ill let you know if that works

jmg58

Oh, Leah, I hope you have a much easier time.  I will send up good thoughts about this!!!!!!  It will be nice to hear good news from you--you deserve it!

I went for fluids today; left the parking lot downtown and headed from home when I got a call back saying to come back my neutrophil count was really low she was going to give me another shot.  Went all the way back and she changed her mind; said I could only have one neulasta shot (which I just got Friday, this is Wed.).  I wonder why it's so low this time....they said to "be careful" so I guess I won't be taking the hour train ride to work or maybe not even going to work at all.

Sandydoc

Checking in with my March ladies!  Hope the sinus sufferers have been treated.  The seasonal temperature changes can trigger headaches, but with an impaired immune system a bad sinusitis is nothing to sneeze at.  (Sorry)

Shaved head last Thursday before going to NYC to participate in karate promotions (been training 30 years) with my long time students.  Glad I don't look like a monkey (my fear).  Everyone loved my skull.  Who knew ?

Got unexpected support from other karate ladies who were survivors-one from New Zealand also TNBC, all keen to share.  It was my post infusion steroid days, so I was pretty energetic.

Crashed big time the next few days just exhausted.  I decided to return part time to work yesterday and barely functioned.  Today did a little better.  Fortunately most of my patients are extremely understanding.

Has anyone started taxol yet?  Wondering what to expect, and how much I'll be able to work.

Best wishes all,

Sandy

JoTro

Infusion #2 today, went well - no nuelasta shot this time, it did knock me about with #1 and my cell counts were good so I get out of that. I missed the Duke and Duchess of Cornwall (Prince William and Kate of England), they came in to have lunch at my work as part of their tour here, boo for Cancer treatment on the wrong day!!!

In regards to the wig, I felt really uncomfortable with mine on and itchy like I was wearing a really hair hat or halo??  I took the scissors to it and tidied up the back and fringes (bangs) and now I'm much happier with it. It has softened especially after I gently shampooed it and I think my head is adjusting to it. So I would recommend getting it styled also as the hair appears to be woven in and not cut with scissors so looks a bit unnatural (I used to be a hair stylist) But it is a wig and not my hair so I wear my glasses slightly over the front a bit to look more natural and that also makes it feel more secure. I notice now I'm touching it and flicking it a bit like I used to do with my hair so me and Esmeralda must be fitting in together better!

On another note I have a sensitive area on my Lumpectomy side in a different position to where my scar is that is a bit lumpy and thickened and tender.  I have not mentioned it to anyone yet, will ring the Oncology nurse if it still there next week.  Anyone having similar issues on same breast after lumpectomy??  Made me cry, just don't need another lot of this again, just want to get over all this and move on.

Take care out there!

TxPlanner

Hi to the all the Marchers-

I officially started chemo last Wed and the fog rolled in. It didn't roll out until Tuesday morning. Also, I had a delayed reaction on the neulasta shot- Has that ever happened to anyone? Bone pain 6 days after the shot? I took Claritin as recommended and that seemed to work.

JoTro- Tender is more a sign of.. things that are not cancer. I could speculated but just tell your doctor to be safe.

I'm off to bed. Goodnight!

TxP 

Xrayalli

JoTro-love the name of you wig! I have two and I will have to creative and name them. Try not to worry about the sore area near lumpectomy but if I were you I would call the breast surgeon immediately. Keep us posted

Sandydoc-I am on Taxol first, just had #5  I do it Thursday afternoon so I can take the rest of the week and weekend off and be ready to work Monday through Thursday morning. I am very fatigued, I've been dealing with insomnia and migraines, that may be unique to me, I am extremely prone to them.(migraines). The first 2 Taxols I had belly pain pretty bad but that has subsided. 

Jenwith4kids

I named my wig too!  Callie - - apparently Callen means Strong...  so I named the wig Callie.

I actually have two wigs - someone gave me a real hair wig that is longer than my natural look so I had it colored and cut and I hate it.  It has bangs, I never wear bangs.  It's heavy.  It's old, it feels like I'm wearing a helmet.  But - I don't plan to wear it very often so I figured I'd suck it up.  But - I hate it.

So, I wondered into a wig shop yesterday and for $40 got a wig that is not real hair, so it's lighter, and it doesn't have bangs - or at least they are longer bangs so I can push them out of the way.  It isn't cut perfect, but I never look perfect either...  I like is so much better...  though I haven't gotten another opinion from someone I trust (hubby can't tell the difference), so that might be $40 down the drain.

Meanwhile, I like my hats.  I just need a wig for once in a while for a couple of hours at a time for work appointments.  Just enough so I don't look sick while I'm feeling good, and until I tell my clients what's going on and get comfortable enough to not have to look professional all the time.

I'm rambling...  chemo does that to me (my new excuse for everything!)

Take care everyone, happy Friday!

Jen

lgoldie

jmg    I had my last AC yesterday.  I had some left side pain so they sent me today for a STAT spleen ultrasound and it was fine.  I tried to tell them that wasn't where it hurt.  Whatever.  I got my Neulasta and went home.  I am nervous about the Taxol, but what choice do I have.   Are your working?

jmg58

lgoldie, I didn't go to work this week because my neutrophils were too low (weird, since it was only 5 days after Nuelasta shot).  Going to go in for 1/2 day on Monday and then for more fluids in afternoon.  That'll be a nice way to see how I do.  Good news is, I had this lump on left side that I found after mastectomy, about the size of a marble.  Was scared $*@() about it.  Went for an ultrasound and they said there was nothing there...just tissue.  They didn't do a biopsy.  It is now GONE!!  So maybe indeed it was just some weird post=surgical reaction.  I am VERY happy about this!!!  Have had a cough all week; not sure why; won't go away.  It was a nice day today here == 65 degrees!! == so I did go outside for about 20 minutes to take some photos.  It was heavenly!  You will do well, Leah, keep looking forward!!

Sinsin

So I went  in to see an urologist today due to very frequent urination, burning during urination, and now some bleeding. Freaked me out and since my ct scan showed mild bladder wall thickening, so I made an appt. Doc thinks it's due to my chemo (Cytoxan most likely) as I don't have an infection but has no sure idea why I apparently don't void my bladder completely. So today was not a good day for me as I'm all freaked out. I'm scheduled for a cystoscopy Tuesday. Fun! NOT!

jmg58

Sinsin, I'm sorry to hear that; I had all those symptoms one day except for the burning.  I then drank about a gallon and a half each day after that (even though I was drinking a lot before, but not that much) and it seems to have gotten better.  I am thinking it is from the cytoxan which easily irritates the bladder.  Hopefully, all will be well and you will only have to drink more, too, or they can lighten it up a bit.  Good luck; let us know, I will be sending good thoughts your way!

Anonymous

I know you can do it. My cousin experienced like that before but she just strengthen her self that she will go through it. I know you will be in good hands.