August 2013 Chemo Sisters

raynaj

sgyukon: Welcome, I wish you had found us sooner too. How have the SE's been since your first infusion.



The hair topic has been discussed a lot on here if you go back some pages you will find all of our opinions but with me I chopped my hair off to my chin about 7 days before it started to fall out and then i had my husband shave my head on about day 12 it was falling out if I tugged a bit it came out easily. I am bald now of course but do have a few bits of stubble that hangs around its definitely not a smooth bald head which is good because its the best velcro there is. It helps keep scarves and such held on my head.

I hope everything is going well for you and remember to drink lots of water.

Make sure to post any question, concern, complaint, opinion here, as we do understand (You are not alone) and we don't judge.

Love, Rayna

SewStrong

THanks Lisa, It's almost 7 and I just made a banana protein shake. It went down well. I feel a little better, although I've certainly felt better, for sure

Lighthouselady, I feel your pain. How cruel of her. Our feelings and emotions are bristling from our conditions and snyde remarks reall cut deep. Maybe she will have second thoughts when she sees you're the only one with hair next month. I had my doctor put me on Effexor to calm my nerves. It keeps me from crying. I can handle things better. Still hate nausea, though.

Happy Birthday, HVV. I hate having holidays and special occasions in the middle of chemo, but what can we do. Hope you eeked out some fun and laughter along the way.

Naan, My dr. also said to take the nausea meds as directed whether nauseous or not. I became nausious even after having taken the pill because I ate fat in my chicken soup. Avoid fat at all costs for a few days. I had read that but forgot.

Hockeymommy and Batcatlady, I second that water deal. Drink at least 4 liters (a little over a gallon) beforehand. I had had 112 ounces of water whenI walked in there at noon to have my first infusion. They could find my veins well, although he did have to change it once because it wouldn't flow, but otherwise, I didn't get sick until I came home and ate that soup. Don't eat ANY fat for at least 2 days, maybe more.It truly isn't as scary after you've done it once. Actually, I think it has been the easiest part. Be sure, if you have a port, to have them spray the cold spray on it before sticking you. I don't have one, but I've heard others say it doesn't hurt if you numb it first. God bless the two of you.

raynaj

kate: You are having your first infusion as well as Naan, Hockeymommy and Batcatlady, busy day for our group. I hope your treatment goes well along with the others.

Love, Rayna

raynaj

Sharon: Sorry you were so nauseous as I have already said a couple times already, take the nausea pills as directed, if they say take 3 a day, then take 3 a day once it gets away on you, you won't be able to get ahead of it.

Don't try and do too much if you are tired, just give into it and be tired and rest, your body is telling you something, so listen to it.

Ha Ha, let me know how doing your logic puzzle goes or maybe in a day or two, I couldn't read a paragraph in a novel and retain anything for the first 5 days after infusion, I would reread the same paragraph 20 times and not remember anything. It was pointless.

Just a thought but as far as food goes, mashed potatoes was my favorite thing to eat, I would make a pot full and whip them smooth and then warm up portions during the day. Or try a poached egg on toast, that was good too. Nothing else tasted good, mind you the steroids really made me want to eat often, I would eat small amounts about 5 times a day.

I hope you continue to feel well, I don't think there is any getting around the fatigue. and no pills for it either. So please rest when you feel tired and walk a little slower just so you don't take a fall and hurt yourself, I know some of the meds make me a little dizzy.

Take Care and God Bless You,

Love, Rayna

raynaj

Lisa: Glad to hear that your infusion went well today, I keep hearing about heartburn from some of you and I'm wondering, do the doctors there (I'm in Canada) not give you a med for the heartburn, I have one that I take 3 times a day and even phoned the onco nurse one time to see if I could take up to 4 a day and I could so I do. I can't imagine not having those pills.

About the Ambien, I was thinking of getting sleeping pills but then thought I wonder if it will just make me tired and still not be able to sleep because of the steroids. Last time i went 5 days with only 16 hours sleep, It's not that I couldn't have slept because I was so tired but my body wouldn't let me because the steroids made me have to move every 5 minutes,I would walk and sit then have to get up so I would walk and lay down and after 5 minutes have to get up, this went on for 5 days, I remember one night my husband got up and said "Still can't sleep, honey?" and I just started bawling, I was so tired and frustrated. So I know the sleeping pills would make my head tired but it was already tired and I certainly didn't need to be more tired. I'm was going to try taking the steroid pills earlier in the day but that won't make a difference anyways because I tried to sleep around the clock and it never worked. I hope that the Ambien works for you and you get some sleep, I definitely know what you are going thru so I do sympathize.

Love, Rayna

SewStrong

Thank you so much, Rayna. You're a sweetheart. I took my nausea meds in the car on the way home and every 6 hours. I even took one whole pill of the second pill rather than 1/2 as it stated. I have 2 nausea pills. I'm better tonight. I really think it was the fat in the chicken soup, no kidding. As I laid on the couch tonight, the bottoms of my feet under my toes felt strange. Uh Oh! I wiggled them and it went away. I will have my husband make mashed potatoes tomorrow. For dinner, I had one frozen banana and another banana and protein powder as a smoothie. I even poured in a little chia tea. It was great and filling and nutricious. I feel just a little dizzy, but nothing else, other than the tip of my tongue feels like I burned it. I might have done that on the broth I warmed. Hope that's what it is. Get well folks. This stuff takes all of our time. Can't they find a way to get this done with one pilll? Probably in a hundred years. I took the nausea pill (1/2 this time) that makes you sleepy. Waiting for it to kick in. Oh yeah, and about that logic puzzle. I even forgot that I was going to do it!!!!! It's here by the table, but I ddn't see a pencil, then I forgot to look for one. It's really bad, isn't it? Chemo brain is here so soon. I always have chemo brain though, so nothing new.

Kate, I didn't mean to leave you our. You've been such a great supporter of me. I will continue to pray for you and especially Thursday. I was told that if I was really out of it by Thursday, to come in and have IV fluids. I hope I don't have to do that. It's too far away to ride when I'm feeling down.

ForMyGranddaughter

sgyukon . . . I had my first infusion on 8/9 the hair in my nether region started to go at about day or 12.  My hair started coming out on day 16. I would say that 80% of my hair is gone.  I did not cut my hair, as I want to see what it would do on its own. 

Some say that buzz cutting the hair can make it feel uncomfortable and prickly.  So far I am combing my hair out.  Other than an itchy scalp what's left of my hair is cushioning my scalp.

gildedcage

Lighthouselady - don't let them get you down. I've got some flack for trying out the caps as well. My Onc told me not to bother and that they were too uncomfortable for people to wear and too expensive. Well, she is right on the expense part but I'm sitting here right now wearing a cap, as I have been for the last 6 hours and I can assure you, it is not that big of a deal. UCLA and UCSF (amongst other reputible hospitals) have been using them and theyve been in use in England for years (covered by the National Healthcare system). Some of these hospitals have them for patients to use right in the oncology center so it's not as if using the caps is a completely absurd idea. They work. It's just out of the comfort zone for what has traditionally been done. Also, there were some crazy "cold caps" that were used in the 80's and 90's that were literally just a bag of ice in a showercap or something. These are the memories that a lot of doctors have when discussing the caps and they write it off as quackery. Never mind them! Think if how good it will feel to walk in and shake your hair in their face of the naysayers. Keep on truckin'. 

Well, just got home from my first infusion about an hour and a half ago and feel just fine. I have to say though, I had a totally different reaction to the premed steriods than what most people have indicated. I took two doses yesterday and slept fine through the night, like a baby actually. Woke up and took another dose and just felt like me but no special energy. Certainly not interested in food. I actually fasted all day. They gave me more steriods over the course of the chemo. Still feeling a little tired and not so much into the eating. What's the deal? Is it cumulative? Am I an outlier? 

Chemo was not as traumatic as I thought it would be. It was over and done quickly and now I'm 1/6 of the way through it. One thing this has thought me is not to fear things until I've gone through them. It's too much wasted energy. Now, let see how I feel tomorrow and then maybe I'll have changed my tune. 

lighthouselady

Gildedcage - woohoo for being done with #1!!  You go!  I'm glad to have another August lady using caps.  What chemo cocktail are you having?  I was thinking AC but you're having  six treatments so maybe not.  Thanks for the encouragement with the caps.  I can just picture all the chemo nurses snickering behind my back, but I hope I can prove them wrong!

raynaj

Lighthouselady: I was wondering who the person was who said that to you about your cold cap, was it reception or a nurse, either way it was totally unprofessional, I would complain to someone and tell them that they should be encouraging not making you feel bad. Well, you just use that cap and go back and laugh in their face when you still have your hair. I hope they work for you. I know what you mean about the scheduling, here they send you a letter, well my last appointment I get there at 8:00 after having found someone to watch my son to have them tell me that my appointment has been changed to 2:15 and they had sent a letter out, that appointment was two weeks ago and I haven't received the letter yet. I asked them to email me but they won't so I said well phone me then. I have my next appointment in 7 days and I haven't yet been sent the letter or been phoned, I only know when it is because I phoned them. You do need notice for these things but they don't seem to think so. I hope you have calmed down by now or had a good cry sometimes thats what we need.



Gildedcage: Good luck to you as well with the cold cap I sure hope it works for you. Its nice to see that so far you are having no SE with the premeds and the chemo, maybe you will sail through without much of anything, I've heard of it happening so hang in there. I wish I would not react to the steroids so much, with the not sleeping, I'm going to try and get alot of sleep before my next infusion, too bad it doesn't work that way and we could bank our sleep. Take care and let us know if things change for you.

Love, Rayna

candi07

Welcome lighthouseladay, my mom is doing the same exact thing, talking in that cancer voice. At first I thought it was my imagination and in my head I would say why is she talking like that I'm not on my death bed. It is a horrible feeling when she speaks in that tone. The next time I'm going to bring it to her attention.

naan1004

Sharon, yes starting all over again, since I am now stage 4, started brain radiation last Tues, but since I have mets in lung, bones, appendix, left neck, shoulder, pretty much everywhere, I will have chemo with the radiation so my other tumors don't get a chance to go crazy and spread or grow. Kind of nervous about this Thurs, but at least it's not the red devil and it will be a low dose, so hoping for little to no SE's over Labor Day weekend, want to enjoy myself with friends and family.

naan1004

Sgyukon, my onc recommended buzzing it and I did cause I had really long hair in 2011. It does get kind of messy and can be traumatizing. This time I'm gonna stick it out as long as I could, not sure yet, haven't really thought about it, but my new onc says not to. I have shoulder length hair now, so it should be ok, but plan on shedding a lot and everywhere, stubbles are easier to clean up than big clumps of hair, especially in the shower.

naan1004

Lighthouse, we have to be prepared, so forget what he says. It's what will keep u alive! I studied like I was in med school the first time around and plan on doing the same this time, knowledge is power, so empower yourself!

naan1004

Lighthouse take charge, I used to and still o carry around a binder with a notebook inside where I jot down questions for drs, handouts about medications, my blood test results, just about everything. Once u start chemo it's harder to keep track so make a binder to organize all your things and questions. This will alleviate a lot of unneeded stress and anxiety. Chemo induces chemo brain, a fuzziness u would never imagine, felt like I was dazed, disoriented and confused, onset of dementia like. Get organized write down questions right when u think of it cause if u try to remember later, u won't!

naan1004

Lighthouse, vent away causes the only person who understands u is us, Dr's and other staff never had chemo, or had to shave their heads or lose their hair. How the hell would they know how we feel! We are women here, hair is our image! Although I do need to express I was quite the hottie with no hair, but that's beside the point! Don't even listen to those ignorant folks, just stick with us, we're your sisters who will hair along with u!

naan1004

Sharon, yeah the first few days after chemo u want to stick to bland foods that will,want to stay down, I did a lot of rice porridge or gruel with little to no flavor until my stomach could handle other foods. Crackers didn't help me much, but works for some. If u ever had morning sickness and found something that worked for u, this also works during chemo.

naan1004

Last nausea note, tell your onc if the meds don't work cause they do have other options and sometimes will recommend taking more than one kind at once. I had 2 different types, one taken every 4hrs and the other taken every 6 hrs, they had me overlap the dosing which helped me a lot. Find what works for u and ask your onc to help u find this, don't do it on your own!

SewStrong

I got up at 3 because the nausea meds knocked me out at about 8:30 last night. I have one that causes sleepiness. Thank the Lord for small favors. I usually take 2 benedryl to sleep. That works well, too. I'm feeling better this morning. I have not taken Claratin yet and I don't have bone pain. It might be because I take 4 Aleve (naproxen sodium OTC) a day for arthritis. If that works in itself, I won't take Claratin. I'm doing an experiment at my own expense, probably.

Naan, I'm going to ask my onc for a jackhammer as a laxative. I took Senecot as I left the first chemo. This is the morning of my 2nd day out and I just know they infused a bit of concrete! As for nausea, I have two meds, also. I was told to use the non-drowsy one first, then the other if nausea didn't subside. I know tat my 1st night nausea was from the fat in the home-made chicken soup. I usually skim the fat off the broth, but my DH did it this time and I know he left a lot of fat. I just didn't realize that until after the fact. I haven't been nauseous since, other than a little queasiness. During chemo, I ate sourdough pretzels, which have no fat at all. That worked. You are a great resource for this site. Did you know you can get a free wig from the American Cancer Society? They give other necessities, as well. You probably know that better than I . For morning sickness with my third son, birth helped a lot. Then I dealt with collic for 4 months. I'd rather have nausea. I, like you, studied like I was to take an exam. If this is your first triple negative, then it's a whole new ballgame anyway. I think I knew more than the RN's at my first surgery appointment. They were shocked that I knew the term triple negative. I'm so glad I did. At that time, I thought breast cancer was all one disease. I had to advocate for my chemo since my tumor was on the margin of where they give it or don't. I may not have done chemo if there had been a medication that targets our tumors like positive breast cancer patients have for 5 years. I wanted to eradicate every last cancer cell, since I read that by the time a tumor is 1 cm, there are BILLIONS of cancer cells in it. I have a great onc who was glad I came back for chemo. I felt that he wanted me to do it himself, but allowed me to make the decision. He is most compassionate. I am blessed. I am praying for you, Naan, along with the others. I am praying particularly hard for you at stage 4. What is gettin me through even stage 1a is God. I don't know what I'd do without prayer, no kidding. He guides my way.

My new Motto: Hair today, gone tomorrow.

Lighthouselady, If your hair ends up falling out anyway, go to the American Cancer Society and get a free wig and have it styled just like your haircut. I found one, cut it myself (used to be beautician before teacher), and none of my friends and family have noticed. I have been wearing it even before I lose my hair to get them used to it. They think that when I dyed my roots, I just got it a little darker. Thought about frosting, but chickened out.

ForMyGranddaughter, Good idea about leaving some hair for cushoning. I think I'll do that, too. I have tons of hair, very thick, but my wig is thick, as well. I couldn't find a more appropriate wig for me and it was free. My new avitar photo was taken with my hair so I can compare it to my wig later. I'll take a picture in the same shirt and see if anyone can tell later on when I lose my hair. My RN said it might be in 2 weeks. I'm in day 2 now, so I don't feel anything, of course. I do have a little sensation in my toes and thought my right hand tingled this morning. I am afraid of icing because of the controversy over whether that might stop the chemo from reaching every minute part of us. I'm already almost 69 and hate to have to do my hair. A wig will be great for subbing. I won't have to do my hair so often. I takes an hour. Ugh. Sharon

naan1004

Sharon, I used to get Lukeine shots and just took some extra strength Tylenol and that did the trick for me, but u should take something cause as u keep getting the shots, my spine and back were killing me.



Laxatives, I used stool softeners, but mine of choice was probiotics, check with your onc and if they are ok with it, take lots of probiotics, yogurt, this is more natural and am currently still taking it. The name is Pro EM 1, brand Tera Ganix, inc. 866-369-3678. www.teraganix.com. This has been my lifesaver and in addition I'm also taking some organic glasswort pills, it's a natural product of Korea and is really helping me. I'm currently taking steroids and pain killers with codeine which the Dr said would give me really bad constipation, but I haven't had a day of constipation yet! I wonder if u can find the glasswort pills, I would try calling around either Chinese or Koean herbal stores or maybe even American vitamin/supplement stores. If you can't find any, let me know and I'll buy them and send them to u. PM me.adk your onc first if u can take these though cause some may be against them, although compared to laxatives so much safer and natural!

naan1004

How do I post pics here? I wanted to show u all the probiotics and glasswort bottle, ugh, I'm so low tech!

SewStrong

I feel spiffy enough to walk this morning. I just dragged my DH out of bed so we can walk before it gets hot. It's to be about 90, I think. We walked the first evening after my infusion Monday. We even went up and down the hill three times. Who says great-grannies can't move? You're as old as you think. I'm 16.

naan, Did you drop in this thread straight from heaven or where were you all of this time? That's good advice about the bone pain. I just told my husband that maybe I'm not hurting because I take 4 Aleve daily for arthritis and I'm so used to arthritis pain that maybe younger people haven't experienced, that I'm not noticing. I WILL take your advice though with the next one. I know we need to get ahead of pain. I've had 3 rotator cuff surgeries. The pain is horiffic with that. I eat Greek yogurt with probiotics daily, but mind is not zero fat so I didn't eat it yesterday for fear of nausea. I hate the fat-free kind.

I'm having sensations in toes and hands, so I know what is coming. I am wiggling my toes and fingers in an effort to thwart the inevitable, but that probably own't work. I am truly afraid of icing, although I don't jusdge those who use it. I have an aggressive cancer and want the chemo to get to every square micromillimeter in my body. I would rather have neuropathy than death, so that is just my choice. I wish I weren't afraid of it. I'd do it right now.

Pictures: I don't know, other than to just change your avitar picture for a time. I was going to change mine as I lose my hair. I thought about showing my great granddaughter twins that way. You're a Godsend to me, Naan. With your experience with cancer, you are a valuable resource to all of us, especially those of us who are TNBC. I still love you and so does God.

LanaM

Back to the sex talk - who said a condom must be used? I asked my onc about sexual activities & his response: "the time to be cautious about having intercourse is if the platelet count has fallen below 50,000" and "you are not exposing your husband to chemotherapy by having sex". He never mentioned using condoms at all. I was specifically asking about sex because my husband has had chemical prostatitis and we didn't want any problems. TMI I know, but hey we BC sisters can talk about anything, right? Lana

carolpr56

I was told specifically that blood, vomit, feces urine and vaginal fluids excret chemo drugs the first 72 hours after infusion. My dr. Said less so with TC, but my hub also has prostate issues, so why take the chance?



Off to work again today, it's been good so far this week tho very busy. So nice to see all the chatter here! We are fantastic!

LisaSp

Thanks Lana for 'the talk.' Every time I would think to ask I have a friend with me! I do understand though that our tissues are very sensitive so Replens moisterizer is a good idea for us as well as water based lubricant.



Naan thanks for sharing all your experience with us! Also Sharonanne, call your doctor right away about the tingling in your toes; they may want to do something about it, like give you a med to help or modify your next chemo dose. It's important to let them know! They do not want you to end up with neuropathy.



For me, constipation has been handled by plenty of water, exercise and Optifiber (flavorless dissolvable supplement). My morning coffee does it too.



By the way on the scalp front I found that wigs really irritate bare skin. So I am now wearing a wig cap, much better. And I got special moisturiser CeraVe; and their brand of hydrating cleanser for my scalp. (bought them both at Target) Also used virgin coconut oil before on my scalp wow that feels good but it's messy!



With all these drugs, both OTC and prescription, and all this new makeup and lotion and toothpaste, I feel like a drug store!

SewStrong

Go for it Lana. We great-grandma's will talk about constipation. It's all in a day's work.

My DH and I walked for about 25 minutes. Took the hill twice rather than four times. Felt fine when I left, but had a little hot flash before we got home. With the air conditioning, I'm feeling ok now. Gotta' move when we can.

Anonymous

Thank you Rayna.  I am doing okay, just waiting for tomorrow's infusion.

Are you all working throughout the chemotherapy?  I am thus far and its fine; just tired mostly.

V

Anonymous

Thank you SAB for the birthday greetings.  I agree.  It sucky to have a birthday during this mess.

SewStrong

HVV, Since I just had my 1st infusion Monday, I'll tell you what I did wrong. I ate chicken soup that still had some fat in it. It was very little fat, but it made me very nauseous. I'm not eating fat for the next couple of days. Skip it at first. Eat bland foods. I'm in my 3rd day out now and this morning, I even walked. The neulasta shot isn't giving me pain, I think because I take 4 naproxen soium (Aleve) daily for arthritis. That must be keeping it at bay. Don't really know for sure. Good luck honey. I'm praying for you and the others that have chemo tomorrow. God loves you. Hold his hand.

tonya845

Hi Ladies, thank you all for the advice on telling my kids, I am going to talk to them this weekend. I actually started feeling good yesterday, (day 7) and still feel okay today. I'm getting the neupogen shots everyday so my hubby gets to give them to me from today forward, I hope he's having a good day at work, LOL. Hope all you gals have a wonderful day