August 2013 Chemo Sisters

gavinsgrandma

Ali68 , thanks for the tip, great advice and I added senokot to my chemo list, funny that Carol asked about fingers and toes, I thought the same thing😄

Beevee, good luck today, you will be in my thoughts and prayers🙏

Carol56, how are you doing?



Shary🌞

raynaj

Beeve:

Gook Luck with your Chemo today, will be praying for you to be calm and have little SE

Love, Rayna

carolpr56

Peace777, lol - that's exactly where it came from! Aug 31st - you?

I like what you say about the first infusion - can we just GET ON WITH IT, please?! In the meantime, I'm taking my husband to chemoteach - should be interesting to watch the colour drain out of his face ; )

raynaj

HVV: I shaved my head the other day in the hospital, actually my husband did and I only shed one tiny tear. I think it will be worse when I'm not feeling well and all swollen from the steroids and catch a glimpse of myself passing a mirror, that will shake me up. Right now every time I do see myself in a mirror or window I have to do a double take because I'm not familiar with the person I see. It feels okay actually but is really cold sometimes.

Love, Rayna

Shalimar630

Thinking of you Beeve. How is your port?

Thanks for the info Ali!

Right there with you Cutie, feelings sure come and go. All over the place.

I was looking at the buff scarf site and was considering getting one, but realized it was just a tube of material. So I found an old polyester shirt and cut it off underneath the armpits, so that it is basically a tube. It's actually sewn on the wrong edges counter to the buff as their opening is smaller at the ends of the tube where my opening is larger (if you're with me on the shirt). But my daughter and I found several ways to wrap it around the head that seem to work really well!

Lily-f

I was so sorry to get caught back up here after the weekend.  My heart is with those that are having a rough go. xoxo

I'm having my hair off tonight...short pixie...may help with the ultimate bald transition. 

My family gave me a chemo kit...it was kind of funny.  Only thing missing was a new thermoter and rubber gloves.

Thanks for the reminders !!!

Good luck today Beeve....I start on two more days

xoxo

gildedcage

Good luck to all who start chemo this week. Many of us will be there with you soon enough and we will all be in this together. *hugs*

Anonymous

Hi all,

i got thru it.  Thursday infusion, Friday yucky but okay until evening and pretty bad from friday evening until Sunday evening then Monday okay but not great.  I wonder if this being my second time (being sad about this etc.) made it tougher.  Not sure.  I think I was fine after the first infusion last year; just stomach upset for a few hours on Saturday and then fine.

In any case, thank you all for your words of comfort and counsel.

V

Martie1228

Am two weeks out from bilateral mastectomies without reconstruction (doctor didn't want anything to happen that would delay chemotherapy).  Will see oncologist Friday for first time to lay out plans for chemotherapy/Herceptin infusions.  Am going wig shopping Thursday with a friend and have ordered some scarves and hats in preparation for losing my hair. Thankful to have some women going through this at the same time!  Helps to know you're not alone!  

gavinsgrandma

Welcome Martie1228, I was just telling my husband how hard it is for me to read my July surgery thread with all the ladies telling about getting their fills, I had BLM on 7/18 planned on TE'S and in post -op my PS told me he did not put my expanders in for the same reason. I respect that and he probably made the right call but I was not prepared for that and have pretty down about delayed recon since surgery. Having a hard time with being Flat and Bald( starting chemo 8/15) I am usually quite positive and up-beat but this has knocked the wind out of my sails. Where you told ahead of time that they may delay recon? I was not and it hit me hard, I need to get some scarves ordered and if you or anyone can suggest a good website I would appreciate it😄Thanks for letting me vent and when do you start chemo?



Shary🌞

carolpr56

http://www.tlcdirect.org/

Shary, this TLC website looks good to me for scarves, hats, wigs, etc. There was a post on FB's Flat and Fabulous from one gal who was out walking the dog with her husband, when a fellow passing by and talking on his cell phone remarked (on the phone, but within their hearing) that he had just passed TWO GAY GUYS OUT WALKING THEIR DOG.  The gal said they about fell out laughing! 

So, chin up, lady! You'll get your boobies soon enough (geesh! sounds like middle school all over again, doesn't it?  ; ) 

Big hugs to all - Carol

gavinsgrandma

Thanks Carol, nice to hear from you, I have not had much luck with conversations on this thread so your reply makes me feel a little more at home😄will keep my chin up, looks like you are starting your infusions next Tuesday, I start Thursday. I will be thinking about you friend.



Shary🌞

carolpr56

Bless you, Shary and ditto! I'll be thinking of you when I go for my port, and look forward to hearing how the first infusion is going. I'm disappointed at having to wait...



Gals , the nurse with the insensitive tone wasn't at work yesterday, but I have considered her a buddy in the past. I'll take your advice and talk to her about it...she's been a nurse a long time, and I imagine she's seen a lot - maybe more than she thought was necessary or compassionate for the patient, sigh! I thank the dear Lord there's no indication I'll be joining the stage 4 gals : (. Now THERE'S a club no one wants to join.



Groan! Sorry! Up again after 5 hours of sleep.

Togetherness

Hello - I am new to this board but looks like a lot of great support and information. I start my chemo on August 9 th. With Cytoxan and Taxotere I was diagnosed with stage II BC on June 25th had dbl masectomy on July 9th with reconstruction and TE and I hate them. My anxiety level is through the roof with the unknown of side effects. I have a Neulasta shot after every chemo treatment and I hear that is worse than the chemo! Any advice would be helpful.

carolpr56

Welcome, Togetherness! I'll let the others chime in who have already had some chemo ; ). But I will say that I am also dreading the neulasta shot...I start the 13th.



As for the TE's, is it that they are uncomfortable? Mine (currently unifoob) was kinda , well - crunchy feeling in there. The actual implant is much more smooth. This time I am opting for no reconstruction.

Togetherness

Thanks carolpr56 for responding. The TE are very uncomfortable. Feels like I am carrying around a bags of rocks on my chest. I go today for a fill. This will be my second one. My PS is putting in 30cc's at a time as that is all I can handle. My back between my shoulder blades hurts all the time. I am anemic so they postponed my chemo getting started. So I hope my blood counts are up and it starts Friday. Just want to keep this ball rolling. But nervous at the same time .

JellyK

Welcome Togetherness :-)  I have TE's too and I also hate how they feel - I've heard them referred to as an iron bra, and that describes them EXACTLY.  The ladies who had immediate implants or no recon are able to sleep on their sides and do things normally by now, but I'm still on pain meds and muscle relaxers just to sleep at night.  Check out the July Surgery thread, lots of ladies on there with TE's who are getting their 1st and 2nd fills.

Shary, I'm so sorry your recon got delayed, I was holding onto the recon like a life-vest, I can't imagine waking up and being told they couldn't do it.  They're super uncomfortable and extend the healing process like crazy, if that makes you feel even the tiniest bit better.  Probably not though, I'm really sorry.

V, so thankful to hear you're feeling a little better!

carolpr56, good luck talking to that nurse.  Hopefully she just didn't realize how cruel she was being - my sister has a tendency to say things that come off insensitively, but once you point it out she falls all over herself to make up for it.

raynaj

Welcome Togetherness:

Chemo is doable, I've had one treatment of Taxotere/Cytoxan and was very fatigued, I am in the hospital right now because of very low Nutraphils (part of the White Blood Cell). So I will now be getting the Neulasta shot as well and am afraid of it as I hear it causes severe bone pain. I will be having my Bilateral Mastectomy when chemo is done. My first advice would be drink water and LOTS of it the day before, the day of and at least two days after. I was drinking about 4 liters a day and that might have kept some side effects away. Also, if any of you delevope a fever of 38 or higher get to the hospital immediately, I almost didn't go but my nurse had stressed the importance a few times and I'm very glad I came, if I hadn't I asked the doctor what would have happened and he said I would have turned septic and gotten really sick really fast and it would have been so much harder for them to fix me. Dont take Tylenol or anything for the fever until the doctor has seen you, you don't want to mask the fever. Also, after every meal I would brush my teeth with baking soda(just dip your toothbrush in some)and then gargle with it,this will keep the mouth sores away. Keep the faith and know that you will get through this, we all will.

Love, Rayna

beeve

The morning after chemo, before my first Neulasta and I'm doing fine.  I'm taking my Compazine religiously, have very little 'breakthrough' nausea and no vomitting, but a headache.  I'm a natural water guzzler so hydration isn't a problem for me.  I'm feeling pretty good and will nap when the need arises.

It's interesting that yesterday morning the nurses tone got more real and serious.  Before chemo day everyone was sunshine and lolipops.  Yesterday, finally, somehow relieved, my main oncology case manager (I guess) went through all the checks and measurements, then got all serious and said 'I'm really sorry you have to go through this.  It's a horrible horrible thing and I'm just sorry you are going through it'.  It was a relief because my husband and I were feeling the 'soft sell' of the previous appointments was just so wrong, but we went with it because why start a fight?  I know they're just trying to keep me calm until the going gets rougher.

I hope the others in my shoes are doing as well.

jnprsn

Hi ladies...

Had my first chemo July 22. Was supposed to get my second this past Monday but due to a raging and painful TE infection had to skip and now hopefully I can do chemo #2 this Monday. So I consider myself part of this group more than July's. Onward...

So Hi everyone!

peace777

Carol56  I'm Sept 6.  Thank you for posting that hilarious story.  What date do you start chemo?

Welcome togetherness:  I'm on day 9 of chemo,  I also am having t/c.  There is so much support form alot of wonderful women.  On the subject of SE, I have fouund is everyones experience can prepare you. But in the end we all react differently in how we tolerate these drugs.  Some of us have certain SE some dont. I pray you have mild side effects.  I've only had one treatment and tolerable SE , sleeplessness, fatige, aboslutely no taste  blah! I just made myself a salad look so good took a bite and BLAH! it taste horrible. I didnt feel SE until day 3. The advice I got was to stay on top of SE so maybe thats why it wasnt too bad.   I am nervous for the 2nd chemo Aug 20  Ieard SE gets worse---Anyone know??  The bone pain I had from the shot was controlled by tylenol for the most part.  Not completely.   The worse for me right now is my dry mouth that seems to have 5 coatings of grossness. lol fatigue, no taste.  No bone pain yesterday or today.  You'll have good days and you'll have horrable days and everything in between what ever you go through I can almost gaurantee one of us have gone through it .   So we are here for you just ask.

I pray that each and everyone of you have more good days than bad and whatever the situation you are going through God will help you through it.

The absolute worse part of this for me and 99.9 of us women is loosing our hair.  I'v not lost mine yet.  I'm glueing it to my head lol

Shalimar630

Welcome Togetherness, I am scheduled for my port tomorrow, pretty nervous.. Chemo to start on the 14th.

I am wondering if anyone has/or is planning to try the Claritan 24 hr tablet tip for the Neulasta shot, or has run it by their docs..?

Togetherness

Thank you all for welcoming me. I am so glad I found this board. I hope I have minimal side effects but definitely will stay on top of them. I am going to try the Claritin 24 hour before the Neulasta shot and several days afterwards. Anything I can do to ward off side effects I will try. My chemo nurse suggested it to me. The one thing I noticed everyone seems to have a port put in. My doctor is not recommending I have one. I hope he is correct!! I have weak and rolling veins so he may reconsider . I wish everyone well and we all are doing this together!!!

jnprsn

Shalimar630, I've had one infusion so far and the shot the next day.  My doctor did recommend the Claritin and it did help.  My legs felt weak and achy only but no major bone pain.

JellyK

Togetherness, is your doctor recommending NOT to get a port or has s/he just not mentioned getting a port?  It's a personal decision, definitely.

Is the Neulasta shot something you get at the same time as the chemo?  I'm told I'll be giving myself a shot every day of Neupogen, I'm not sure if that's the same thing or not.

candi07

Spent all day at the hospital for my staging studies. Had an iv put in for the bone scan for the radioactive injection. They left the iv in to be used for the CT scan, all was well until they flushed the iv and I felt a bad stinging sensation. The nurse flushed again and it felt like some stabbed me and pulled the knife up my arm. They had to take the iv out and start another one. This was supposed to be a simple and painless procedure. Ugh!

gavinsgrandma

Candi07, I am sorry you had such a difficult day, I pray a good nights sleep for you and a better tomorrow😴

Jnprsn, I am so sorry about your infection, I will be sending healing prayers your way and I sure hope you have no more delay's in your treatment.

Togetherness, keeping good thought's for your upcoming treatment and praying for no se.

Beeve, peace777 thank you for being there for all of us starting or getting ready to start treatment, it is so valuable to our bodies and our spirits to have such great help.

Shalimar630

Oh geez Candi, so sorry you had to go through that. Does not sound fun at all! Hope the discomfort didn't last long and you are feeling better.

OregonDarcy

OK, first time I've ever joined a group or posted anything other than on facebook.   But,  figured if I was going to come and check out everyone's posts, and you are brave enough to share, then I need to be that brave as well.   Today was my first chemo infusion.   Diagnosed in May, bilaternal MX in June, port in July, and now two months of chemo.  The acutal chemo went well, but I have leg aches and pains and a headache.   Taking tylenol for that now, but if I can't sleep, will try something stronger / better.   Drinking water & juice like crazy so hopefully that is helping.  Tomorrow the shot & claritin.  I certainly don't have any words of wisdom, but will offer my words of encouragement and support to everyone here.

Anonymous

I'm so sorry for everyone having to deal with those terrible se's and infections and the like.  Hang in there.  Know that we are all thinking of you and sending a lot of love your way.

V