August 2013 Chemo Sisters

gavinsgrandma

Ladies I just posted a big post in ILC thread that was ment for here if you want to read it, it has a few ideas on organizing your info😛

raynaj

Ladies: Gavinsgrandma posted on ILC Warriors thread and has some good ideas regarding keeping a binder with all your information. It is informative so find the thread and give it a read, she meant to post here but posted on ILC Warriors by mistake.

Love, Rayna

SewStrong

Tonya, Don't make him mad at y. I'd hate for my husband to give me a shot. His hand shakes from palsy. I only havev to take a shot once after my chemo.  We have to drive 45 minutes to the doctor's office to get it. I'm glad it's only once!

I hope everyon e is doing well today. I fell a tiny bit nauseous, but I don't have bone pain. I'm glad I didn't take the Claratin. I would have been swearing by it. Now, I'm swearing about Aleve (naproxen sodium), since I take it for arthritis daily.

God bless everyone, especially those going tomorrow for their first infusion. If you have been drinking lots and lots and lots, I think you'll be fine. I am praying that you do not experience any allergic reactions from it. I didn't, and I even have allergies. Take the laxative early, maybe even before you go, so it will work by the next morning. I took mine when I got in the car to go home and it took another day to work. It's very necessary, at least for TC.

batcatlady19

Re: sex -- condoms (or other barrier method) were suggested to me simply as birth control bec. I'm not in menopause yet. Chemo does send you into menopause but it's not a guarantee, & the LAST thing I need right now is to get accidentally knocked up! If you're well past natural menopause, it's prob. not necessary. Just use a lot of water-based lube bec. chemo destroys your natural mucous membranes (that's one of the reasons we get mouth sores too). Enjoy it if ya feel like it

Oh & re: info binder. You can also get a really nice free one from various places like livestrong.org & youngsurvival.org. They have tabs & folders for everything from treatment to bills to checkups, you name it. Free!

naan1004

I didn't ice either with last chemo and had pretty bad neuropathy, but it does get better with time. If u do have concerns that ice will prevent chemo from working talk to your onc and see if they recommend anything. If u have had pain from arthritis and other issue, neuropathy will be tolerable. Like u said I have never had those pains before except during labor pains, so short lived, but sure did feel them! I'm currently 41 yrs old and was diagnosed at 39. After all the treatments felt like I was 90. Couldn't walk right, moaned every time I got up and sat down. I also have chemo induced menopause, confirmed it with a hormone rest with onc . Don't really miss my period, but feel like I'm in my 50's or 60's already at times. Thank goodness I don't look it!

naan1004

Tonya, how old are your kids? Mine were 5 and 8 yrs old at initial diagnosis, now they are 7 and 10 yrs old. It was so hard for me to tell them too. They were too young and I knew they would be so scared. I went to the local library and found a cute book about a mom going through chemo and we read and discussed it together.

I shaved my head prior to chemo and told them ahead of time, they got used to it, but was a shocker at first cause I had really long beautiful hair. Keeping them in the loop helped us all cope. There is also this really cool camp for kids of cancer patients for kids age 6-18 yrs old. If your kids are in this age group look into it and send them, it will make a world of difference. It is called Camp KESEM, they are online or on Facebook, pm me if u want more info. I sent my youngest at age 6 for the first time at a sleepover camp, was nervous I was gonna get a call to pick her up cause she was crying from being homesick, but she made it with flying colors. As soon as she got off the bus, she asked if she can go again!

This camp is absolutely free for one week in the summer, run by college students who volunteer their time and run their own fundraisers to send our kids to camp! How awesome are they, my girls are part if the UCLA chapter, they have campus all over the nation and camps too. My kids go to this camp with peers going through the same struggles as they are and can make lasting friendships. Most of the campers grow up to become counselors when they enter college too, my older daughter already wants to be one! What great role models they are!

naan1004

Gavin's grandma, u can copy and paste it here, I do it all the time cause I'm in like 4 threads.

sgyukon

Raynaj, Naan, and Formygrandaughter, thank you for the advice and the welcome!  It is day 13 for me and so far I am not losing any hair on my head (at least no more than normal), but I am noticing some in other areas is starting to shed.  Guess I should expect the rest of it to start going in the next couple of days.  I'll probably wait and see how it goes before breaking out the clippers.  I actually will be off of work next week so at least I won't have to worry about showing up at teh office with bald patches.  Being bald doesn't bother me so much, but I just can't stand the way people look and talk to you - the 'cancer look' and 'cancer voice' - aarggh!  I honestly feel fine 80 or 85% of the time, but I know people just don't express themselves well - I find I give more consoling then I get :-).   

What about acne from the steriods?  I haven't had breakouts like this in 25 years...I just started making my own facial scrub and that seems to be helping (green clay, oatmeal and ground almonds), I am hesitant to add any more prescription drugs, trying to limit the chemicals.  I also plan to switch over to an essential oil blend for a moisturizer - I'll let everyone know how that works.    

Love and hugs to all of you!

mankatostate

Hi all,

I have never posted on a web site so this is new to me. I have been reading posts for a while but realized I really needed to sign up and hope to get some support from some others who are going thru chemo too. I started mine a little over a week ago. I have 4 rounds of TC. I wish I would have found this thread before now. I hope this group is not too full and you will let me join.

Yesterday and today have finally been good days for me again. I had a really hard time from the steroids they gave me and I couldn't sit still or sleep for days. I also got one of those shots for white blood cells. I was in so much pain from it. Between both of those I was so ready to quit chemo last week.I was borderline as to if I needed chemo. My onco score came back as a 22. Because of my age and grade the doctor recomended me for it, but it was really hard for me to make the choice to do it in the first place. Since I have finally had a couple nights of sleep again, I am now realizing so much of my issues were from the steroid and lack of sleep. We just moved to this town 2 months before I was diagnosed so I am needing some sort of support of those who have it to give. I had been so strong though-out the whole summer and I think it all came crashing emotionally for me on Monday. It was my husband's, who is a professor, first day back at work for the school year. My husband works out of town (five hours away) and is gone Tue-Thus. During those days I am depending on 3 teenage boys for support...Any of you have or had teenage boys you can read between the lines. :-) Thanks for any encouragement and support I can get from you all!

Kathy

SewStrong

Welcome sgyukon, I was so busy with my first chemo on Monday, that I didn't get to welcome you. I'm also forgetful, so if I wrote you a message, just excuse me. I have written lots of post, hit the wrong key, and away they go into cyberspace. I'm watching your posts to see when you actually lose your hair so I can be ready. I know we're all different, but it has to be similar. Did you know the American Cancer Society gives free wigs? Mine is 100% human hair. I styled it like my hair and no one notices. I haven't lost my hair yet, just wore it out to see what people thought. No one knew. God bless you. I'm glad you came.

Shalimar630

Hello Kathy, you are quite welcome to join. Ask what you need to. Everyone is here to help out. Your path looks quite similar to mine. I just started on the 20th. My oncotype score came back higher (crap). But what do we do. We fight on. I don't seem to be having as much pain from the neulasta shot now. Pretty fatigued though.

I at least hope those three boys will help keep you occupied and distracted. You should put them to work, get them in shape to help you out!! Ha.

Good thoughts to you!

SewStrong

mankatostate, I am here for you, as are all of these wonderful women on this thread. You are welcome here. I already have some advice for you, and I am only in my 3rd day from my first chemo. I'm taking TC like you, 4 rounds every three weeks.  I was borderline, too, but I chose to have chemo because I have triple negative, which is aggressive and there is no targeting medication for 5 years to keep it from recurring like positive bc. For the pain of the shot. I have arthritis, and I take 2 Aleve (naproxen sodium) every morning and 2 every night. I have had3  no bone pain. Some people say that Claratin works for that. It sounds odd since it is an allergy medication, but whatever works works. Also, I, and most others on here, drink at least quarts/liters a day. I drink a gallon. I count juice, water, and other liquids. That is supposed to help flush out the chemicals and help your kidneys and liver and other organs. I have one biggie. Do not eat ANY fat for the first three days, at least. I forgot and had a bout of nausea. I won't do that next time. I take two benedryl at night 8 hours before I want to get up and it helps me sleep. I have 4 grown sons. I cannot imagine raising them with this. God bless you. That has to be extremely hard. There are so many people here with great advice to help get us through this time. REad all of their posts. Everyone is wonderful and will hold you up. That's what we all need right now. I rely so much on my husband, I can't imaging his leaving for 3-4 days a week. Hang in there. Everyone is here for you.

mankatostate

Hey thanks for the welcome Sharonannebaker and shalimar630!

Shalimar630 I started my chemo on the 19th so I am about as far along as you. What drugs/chemo are they giving you? I was having dreams about my hair falling out last night. I plan to go in this next weekend to get my head shaved. Since my husband is gone during the week I don't want him to leave one day and come back two days later to a bald wife. He tells me it doesn't matter, but I tried to explain to him that to me it does.

Sharonannebaker thanks for the bone advice. I had been reading about the claratin and since I have allergies and arthritis I was taking an allergy pill (not claratin though) and Advil. Well on Monday when I went in for my blood numbers the nurse suggested I try aleve. So I have switch to both claratin and Aleve. I have already noticed a difference in my pain. Now whether it's due to time or the medicine I guess I will have to wait and see on that. They also gave me a sleeping pill...so life is much better now. Surprisingly my boys at home have been wonderful. Two started back to school this week. Ones is a Freshman at a local college and the other in High school. Both can drive and have made many trips to walmart to get me food and medicine. My youngest is 13 so he is home yet as school hasn't started for him. He is my "loving support" as he is still young enough to want to spend time with mom.

Shalimar630

Kathy,

I also am on TC x 4 ev 3 weeks. I took Claritin for the shot and continued for several days after. I have been taking such a selection of different things, but I can't say I've found one that works absolutely for this or that. I am drinking alot of fluid as everyone is recommending for sure.

That is so great that your boys can run errands for you. This is your time. Let them help.

sgyukon

Sharonanne- god bless you too! OK - Free wigs!?!?! Wow, I wish I had known that.  I've  heard some insurance companies reimburse for wigs but mine does not.  I am saving all my reciepts because I will list all of these as medical expenses on my taxes next year.  I already bought 2 as well as a baseball hat that has hair attached.  All are synthetic, which is why I got 2.  I know I am bound to get too close to the fireplace/grill/dishwasher steam/or any other heat source and melt the hair, as I am pretty much a total spaz/clutz.  One is a better one I got from the 'wig lady' the cancer center recommened, the other is a more inexpensive one I got online.  The baseball hat is nice, I'm not much of a hat person so I think I will be wearing the wigs a lot (of course I say this while I still have my hair, I may feel differently in a week or two).  I do plan on donating them when I am done with all this. 

I have 2 cousins who have both been through this and they both started to lose thier hair about 2-3 weeks after the first treatment.  Interesting side bar, these cousins are sisters and on my dad's side of the family - none of us have the BRCA 1&2.  They both got diagnosed in their mid-50's, I am 44.  I have no idea why i got this, but I don't worry on it too much.  When people ask I tell them (in a very serious voice) it is because I drank water out of the garden hose when I was a kid. ;-) 

Shalimar630

Still on the medication aspect...See if I can do this without making it too confusing. Has anyone been counseled regarding the amounts and mix and match of what we are taking? I'm referring to say Tylenol, no more than 3000 mg in 24 hours, ibuprofen 1200 mg, Aleve 660 mg, all in 24 hour period. I know these are our basics, not even prescribed meds. I am just a bit perplexed. I think I will ask tomorrow when I go for my lab draw.

Gashgold

Hi everyone, especially Kathy and sgyukon welcome.  And to anyone else who is reading but hasn't joined up, join in!  This has to be one of the few really good things about having this disease...I never would have met the wonderful, fun women on here.  This is short because I'm at work about to start the school day and so far have managed quite well.  Except occasionally starting a sentence and wondering how on earth I was going to finish it.  Sorry my grammar etc is pathetic for a teacher but usually by the time I get on here I really can't be bothered thinking about it.

I have one really dumb question - do you start counting the days from the actual day of the chemo or the day after? So is the day you have chemo, day 1?

Gashgold

Oh and Naan - great to have you here too! and if I've not welcomed anyone else on, I'm sorry, but the good thing is it means we are getting pretty big!

Gashgold

Well I suppose that is not really a good thing, but you know what I mean.  Hope all are doing well with SEs. 

Gashgold

I took a risk last night and went out for Mexican for tea and did what i swore I wouldn't, ate uncooked veges etc.  just hoping I'll be ok.  But the thing I found really hard was the waitress was an ex student who has been out of school for a couple of years and the first thing she said was, " hi, hope you're getting better".  I just wanted to turn round and leave.  I  live in a small city and my school is part of a tightknit and small faith community but how does everyone know?  And why can't I go out and just feel normal for a night...I mean my hair hasn't even fallen out yet!  I know she meant well, but like that lack of privacy thing is starting to make me paranoid.  I hope I get over this.  I wish I could just be an 'out there' person...but...it ain't easy!  Sorry... just had to yell at someone.

batcatlady19

Shalimar - I was told by my doctors (& have also read) to avoid all NSAIDs (ibuprofen, naproxen, aka advil, aleve) bec. they have mild blood-thinning properties that can be harmful while on chemo. The chemo drugs reduce platelets, the part of the blood needed for clotting, so if you get a cut, you may bleed more. NSAIDs can worsen that. Tylenol doesn't (it's not an NSAID), so it's safe. I was told the same thing before my biopsy & surgery, also to stick within the standard Tylenol dosage, no matter what the medication (bec. Tylenol can be part of other meds, like prescription pain meds & OTC cold meds; read lables). But always check with your own doctor.

beeve

Day two after Chemo #2/6 and I'm approaching it much differently than the first.  I was very cautious last time but this time I am taking advantage of the steroid rush to do heavy yard work (my main physycal exercise).  I've been converting some wild creekside into a sunken patio for a couple of years and spent two whole hours down there today.  I could have spent more but we have to run to town for my Neulasta shot and other errands.

My sister in law said her worst day was the day she had her head shaved but I had no problem and am sort of enjoying the adventure of baldness. 

Plus, it turns out our house (I designed it and it was finished last year) is going to be featured in a local magazine, so I need to start neatening up the various piles of stuff. 

All in all, I'm doing pretty well. 

SewStrong

That's funny yukon, I drank from the water hose, as well, so now we know where we both got it! Cute.

gashgold, I count the next day as my first day because I didn't get out of the office until about 4:30 that day. I don't know what the others do. You have a right to keep your life private if you choose, but it's hard in a small town. I live in a town where everyone knows the brand of underwear you buy. I kind of like it that way though. I grew up here an everyone comforts me. I don't mind even if strangers say something. It's just the difference in people, I guess. Do what you have to do to make yourself comfortable.

batcatlady, About NSAIDs: My doctor allowed me to stay on them plus an 81 mg aspirin. He said that if my platelet numbers were out of whack, we would take me off of them. If he does, then I'll have to take Claratin. I was already on naproxen for arthritis plus one baby aspirin a day. He did tell me I couldn't take any more aspirin, even Excedrin, which contains aspirin. I did stop the aspirin for a few days, but it is necessary to be able to take slo-niacin for cholesterol. It alleviates the flushing I get with it.  

LisaSp

Kathy: Welcome! Feel free to join in we won't bite much!



Yukon: I'm stealing the garden hose answer! I have had enough people ask 'how do they think you got cancer?' As if I know! Or anyone else for that matter.



Batcatlady: When I was having bone pain last tx round, the nurse said Aleve and up to prescription level (4 Advil) were fine. And it stopped it. No aspirin though. I'm on day 3 of the second tx with Neulasta yesterday. No bone pain, I've taken an Aleve every morning since yesterday.



Everyone is different in what upsets their stomach. On day1, I had a tuna sub for dinner and day 2, chicken and steamed broccoli. But I agree bland is best, so no Thai or Indian for a while! I think the Pepcid AC is helping keep away heartburn and I try to eat frequent small meals.



Have a good evening all!

gavinsgrandma

Karen, welcome to our crazy group, there is a very diverse group of women here from all ages and we really try to help and encourage each other😄 I am glad to hear that the SE'S this week do not seem to be too bad, I have my 2nd " Dance with the Devil" tomorrow, aka Big Red but I will be 50% through with the big 4, two stars for me tomorrow 🌟🌟I did not take Claritin last time but I am going to this time but I am not sure, do I take it staring day of chemo or next day before Neulasta?



Shary🍁

wing48

I don't know how I'm going to get though treatments feeling so hungry ALL OF THE TIME. 5 lbs in a week. And I've walked everyday 2+ miles. Just insult to injury.

ForMyGranddaughter

Today I decided to cut the remaining strands of hair. When you've lost 4 out of 5 hairs, there's no way you're going to leave the house without a head covering.  Then I had to ask myself, why am I holding on what's left . . . so I cut it down to about 1/4 of an inch, I didn't buzz. What's interesting is that what fell out just fell out; however, what was left kept it's length.

I let my granddaughter help cut; she went to town using her safety sissors.  Then she said, grandma, you really have a bald head.  I said, yes I know + you cut it beautifully!  I'm hoping my wig fits better now.

Have a rest-filled night's sleep; sweet dreams.

naan1004

Kathy we are all here for you, I have 2 little girls 7 and 10 yrs old, so not much help from them either, but the fact that they are there and need me makes me want to fight for them! Hang in there, things will get better and so will you!

naan1004

Gashgold I count day of chemo as day 1, easier to keep track!

naan1004

I'm fairly new to this thread so, welcome to those I didn't realize were new like me.



My chemo will start again tomorrow, not looking forward to the SE's but if it's gonna kill all my cancer cell, I'm ready! I was hoping to start after Labor Day, but hey the sooner I get rid of all my tumors the better, right ladies! Hope all of you have little to no SE's and we can all do this together! Wish me luck!