Starting Chemo July 2013

m1970

lark - Be careful with driving on days 2-4 after chemo.  The fatigue can hit you like a truck.  It happened to me when I was on AC when I was shopping and I managed to get myself out to my car and passed out for hours.  I was afraid to drive anywhere right after chemo after that.  Another time I was on the front porch and just passed out and no one could move me.

I have had a splitting headache since last night, and ibuprofen is not cutting it.  I am trying to drink as many liquids as possible.  I'm on day 2 after chemo and if this is all I get it's not too bad.

Rambo50

Marsha 1970 - Scary   I'll have to watch it (if I decide to teach) and maybe have someone drive me.

Thinking of all of you who've had chemo already and are fighting like BC warriors!

Here's something I started in case you're interested: www.mymidlifemeander.blogspot.com

It's proving to be therapeutic!

Rambo50

Marsha 1970 - Scary   I'll have to watch it (if I decide to teach) and maybe have someone drive me.

Thinking of all of you who've had chemo already and are fighting like BC warriors!

Here's something I started in case you're interested: www.mymidlifemeander.blogspot.com

It's proving to be therapeutic!

anniej76

MotherT, Rambo50, and lark I am right there with ya... 4 cycles of A/C every other week then Taxol 4 cycles every other week. Had my first cycle of A/C yesterday. Feeling good and strong - tired, but not out of ordinary. Heading to get my shot of Neulasta in a half hour. Haven't taken any Claritin yet - is that must or just a suggestion for possible SE?



I too am a teacher. I'll be done with A/C before I go back. All four Taxol cycles will be during school. I do plan on working but will play it by ear.



Have a great weekend ladies! Stay strong.

Pattysmiles

Annie,

The Claritan 24 hour once a day, beginning the morning of the Neulasta shot and one each morning for the next 7days is a suggestion.

There has been a lot of discussion that this prevents the bone pain often associated with the Neulasta shot.

My oncologist said she never heard of it, but did not discourage me from trying it.

The nurses in the office say I am the only patient that does not complain of bone pain. I find that ironic as the oncologist had said "so few people get bone pain it's nothing to worry about". Apparently there are more than a few people complaining at my oncologist office! It is a shame they don't suggest the Claritan 24 as a possible preventative measure.

One other bonus of the Claritan is that a number of people have complained of the steroids affecting their sinuses. I think the Claritan has helped me in that area as well.



Here is a link to a study underway regarding Claritan (loratadine) and bone pain associated with Neulasta.

http://weinterruptwalbridgesregularlyscheduledprogram.wordpress.com/2012/02/04/claritin-and-neulasta/



Pat

Pattysmiles

Regarding Neulasta shot and bone pain.

It IS possible that the dosage of the Neulasta shot be decreased if you should experience bone pain. After each visit I was asked how I tolerated the shot previously and when I said no problems they gave me the full dosage. They had said if I complained of any bone pain they would have cut the dose in half....which was NOT a guarantee of no bone pain, AND I wouldn't have the full benefit of the shot...though I guess it could be argued SOME benefit of the shot is better than none.



Pat

lark

Hannarigs - I'm right there with you waiting for the senakot and miralax to kick in. Let me know if you find a better solution!



Marsha1970 - thanks for the warning. I've been driving all over today and just saw your message. I was fine, but good to know not to do too much. Glad you're feeling better today.



Anniej76 - the Claritin was just a suggestion, not a requirement before Neulasta. If you have bone pain this time keep it in mind before the next one. It sounds like it has helped others. I'm praying that it's not too bad for all of us this weekend!

Bluebirdie

Hello ladies,

Thank you for the welcome. 

Soriya123--have you had any surgeries yet or did they go straight to chemo with you, too?

I'm now 10 days out after my first chemo.  The sore, inflamed mouth has been one of the worst SE I've encountered so far.  I have just started using the baking soda/salt/water rinse and it does seem to provide some relief.  Not sure what else I can do to prevent this from happening next time.  The worst days were probably 3-6.  Just no energy at all.  I've still tried to do a few little things here and there, like walking every night, had a meal out with my boyfriend and nephew on Saturday, made two trips to Target (not driving myself yet, though).  Either I was pushing myself a little too hard or my body is just not as strong as I'd like it to be, but I had to sepend a few hours in the ER on Wednesday evening.  I spiked a temperature (100.4), took 2 tylenol and called the advice nurse.  She said I would have to go the ER for blood work and to be checked out.  They couldn't locate any particular cause of the temperature spike (like, no UTI or ear infection).  They put me on two IV antibiotics and gave me an additonal 10 suppy just to be sure.  When I talked to my own oncologist yesterday she said I have pretty severe neutopenia (low count of the neutrophil type of WBC).  She said to be really careful to avoid infection, rest, stay hydrated for now.  She said that starting on my second cycle they will add the neulasta injections to help prevent this from happening again.  I'd had a headache since then, but it finally seems to be subsiding!

I ordered the Brian Joseph's brow gel after seeing it on this thread. I really hope it works.  I know that I've already had one chemo so I'm not starting when I should, but it can still help somewhat, I'm game.  It should arrive today.  I haven't noticed any thinning of my hair yet, but I have really thick hair.  I'm mostly "okay" with the fact that my hair will fall out, but if I can try to keep my lashes and brows I think I'll feel a little better (not as scary looking, I guess).  We'll see how it goes. 

I hope that everyone is recovering from any of the SEs you may be experiencing.  My port seems to be healing up well, not really as sore anymore, so hang in there ladies with recent ports! I haven't had mine accessed, yet, but I will ask for the cream to help numb the area before my next infusion.  I'm thinking of you all and sending good feeling vibes your way!

--bluebirdie

soriya123

Hi Bluebirdie, I'm glad to hear from you. I was wondering about you for the past days. I will start chemo first and then surgery. My first chemo will be next week on the 17th. I'm scared but at the same time I want get over with it. My sister ordered Brian Joseph brows and Gel for me but I haven't recvd it yet. It had been like 6 days already...hmmm I hope I will get b4 my first treatment.

aaoaao

For me the main issues with chemo is the constipation and the FATIGUE.  And yes it does hit you like a punch in the face.  You'll wake up fine, leave the house and half way through the day you start to feel like you weigh a ton.  Just lifting your legs to walk feels impossible.  The only thing you crave is curling up on the couch or bed in a ball to rest.  When you tell people you're tired they often can't really understand just how exhausted you are.  A chemo tired is a whole different breed of tired that most people will never understand. 

soriya123

Ladies, My chemo will be soon the 17. Today I should never browsed online about survival rate based aged n tumor type. I feel so sad after reading about it. I am 39 yrs old. My tumor type is er/pr- Her2 neu+, so far stage 2. I have two beautiful kids(son 11& daughter 7). I want to live to see them grow up.

Pattysmiles

Soriya,

Sorry you looked at survival rates, but whatever you read might be outdated, please stay away from that stuff! Your oncologist should be giving you info based on YOUR tumor...they would look at the grade as well.

There are other testing that might factor in, but remember, no test is 100% accurate, this is an ever changing disease in regards to treatments. (For example, for ER + Tamoxifen was only recommended for 5 years until a few months ago, now it is recommended for 10 years)



Please place your trust in your oncologist. And if you decide you no longer trust him/her go and get another opinion. I also have young children, 10, 12 and 14. Naturally I want to do whatever it takes to be here for as long as possible, just like you.



Keep fighting the good fight, and try not to read those websites that scare you!



Pat

soriya123

Pat, all I kno that my grade is high and aggressive(bad tumor) My K...something score is 90, that what my BS had mentioned to me. My oncologist didn't say much about my tumor. He justt lay out the plan about my treatments and explain about side effects n other stuff. My primary Dr n Everyone that I met says he really good onco and said I am in good hands. So I hope so.

anniej76

Pattysmiles - I met with my onc during my neulasta shot today.  She said there is a clinical study on the Claritin.  She suggested to do 1 pill the day of the shot and 4 days following - for a total of 5 pills.  I usually don't like to take things unnecessarily, but I'm willing to give it a try.  Thanks for all your support ladies!

Rambo50

Soriya - I looked at the stats too and just about lost it completely!!!  Don't think of what you're seeing NOW, but what how much BETTER you'll be with the chemo treatments  Mine is also aggressive, and my chance of recurrence and spread are both quite high, BUT, I'm going to do everything in my power to be in that WINNING, SURVIVOR category!!!  Hang tough - I know several ladies who, based on stats, should NOT be here today, but it's been 10 and 20+ years and they're beating the odds!  We will too   -- BIG HUGS to you!

~Lynn

Pattysmiles

Annie, so glad your onc is up on things! I sure wish mine was! Lol

I've been doing 7 days of pills, well, actually 8. One the day of and then for the next 7 days. It has worked for me...maybe overkill? I'm not one to take meds unnecessarily either...but in this case I felt it was necessary.



Soriya, keep fighting. Sounds like you have a good oncologist if everyone is speaking so highly of them. That is very important. Don't think too hard....



Pat

Nocompromises2013

Hi Hannarigs.. i had movement days 1 and 2 but nothing yet today  i am on senna and coloxyl ( 2 @n and 2@ morning) but feel i need to either have a good walk or up the ante... my onc recommended glycerin supps, movicol  lactulose ( too sugary)  and colonlytely  then see GP

NC

soriya123

Thank you Pat, I feel like I have a sister to talk to when I am down. Hugs to you too! :-)

soriya123

Rambo50, thank you, I feel bettet after talking to you lovely ladies. :-)

Bluebirdie

Soriya, I made that mistake too. I was trying to decide if I wanted to continue with fertility preservation after my diagnosis moved to stage IV and i was told I would be on herceptin ans perjeta indefinitely and unable to use the eggs myself (I opted not to continue and start treatment right away and focus on getting myself better). But the 5 year survival rates I saw were based on data from years ago and there have been advances in treatment since then. One of my professors has an aunt who was diagnosed with stage IV BC at age 27 and she's still fighting cancer off at 71! She had a recurrance but beat it. Another professor who recently was treated for BC herself and did a ton of research said the drugs doctors have access to now are rewriting many of the stats. I'm trying to keep all that in mind, but am also trying to stay realistic. I might not be a super survivor, but maybe I will be! And I'm gonna do everything in my power to make it possible. I know how overwhelming this all is. Sometimes I have really sad days, too and it's hard to stay positive.



Like Rambo50 said, we will beat it, too! (((((Hugs))))

soriya123

Bluebirdie..... My Onco told me not to browse online, just like all of you ladies mentioned erlier, their info are out of date, but I didn't listen to him. Thank you and hugs....yes we all have to beat this!

jbdayton

A note on Claritin.  My onc told me to take Claritin day of and for 5 days after.  I still had severe bone pain.  Beginning treatment 3 he had me start 2 days earlier and surprise no bone pain just minor joint pain.  I think the Claritin worked for me.

Good luck to everyone in treatment and minimal SE's.  Hugs to everyone, you can get through it.

Luckily, I finished chemo the last week of June.  Now on to further testing, surgery and possible rads.   

honeybunny96

good evening ladies.  so sorry for not being active the past couple days.  those two pre checo days' have been really busy and I just  am so exhausted.  Tonight even more so. I have done chemo #1.  I have a carinbride page that I update if anyone wants to follow  www.caringbridge.org/visit/mda... you just have to sign up with an email/password so we know your valid  As of now.. I'm just gonna copy and paste what I wrote:

So yesterday afternoon we finish with my oncology appt around noon, and go to my friendly neighborhood Safeway as that's where I fill all my prescriptions. I walk in with about 3 pages, or what it feels like is a zillion drugs to open my own pharmacy. I ask her that I need to know what the drugs are going to cost. She looks at the sheets and starts to panic. She only has about 15 minutes to order the drugs for todays dispensing. And yes. I need them tomorrow. So off she went with her speedy fingers put to work. Yay she's Awesome. She gets the orders in and I find out that Ryan's benefits are wickedly fantastic. Let's just say I got 1175 airmiles on those alone. Hmm honey, where we going after all this is done?? 
Fast forward to 8 pm when picking up the arsenal of drugs. Go home, make myself a spreadsheet to tell me what time, drug and when. Fast forward to 730 this morning. We drop off Alicia at her friend Maxine, thanks guys. Then go to TBCC or Tom Baker Cancer Center. Ended up arriving half hour early. We decided that some food was in order, and with eggs Benny on the menu.. mmmm. So we checked in about 850 am. Didn't get called in until after 945. Here is where that deep down braveness had to surface, as well as my meditation skills and, of course my hubby Ryan. I think the worst was what not to expect. The chemo nurses were wonderful. They explained every step of the way. I think the worst was getting the bandages off the port, as it was still tender. 

So now it's time for the "Red Devil" How can something that needs to have the nurse cover up, double glove up and wear glasses be good for me?? Oh wait.. it is isn't good for me.. but GREAT and kills the CANCER! So.. that went in well. No issues. Flush next, then the next part of my treatment. This one was an hour long. Good think I had some wonderful friends who were able to talk to me while I was in treatment. I was by a lovely window over looking the valley. (pictures to follow)

So all went well (except for that migraine). I have wonderful friends and family taking care of me. THANK YOU SO MUCH. I did sleep most of the day and will just take it one day at a time and one foot in front of the other, to take up one morning to be FREE! I WILL BEAT CANCER! 

I am sorry i am unable to respond to each of you seperately.  Just know that YOU ARE ALL in my daily thoughts and prayers!  

love n light 'gnight!

Nocompromises2013

Awesome hunnybunny I reckon that first day of chemo has to be the hardest psychologically - for me it was Day 3 and no symptoms but I am Still waiting for my sennacol to kick in Grrrrrr. (( 

edited to add....3-4 hours later ....bombs away woo hoo.. bowels still functioning....

NC x

soriya123

Honeybunny, take a good care of yourself. :-)

Anonymous

Dear ladies,

I'm not getting chemo in July, but wanted to leave this note of encouragement. I had the whole "kitchen sink" thrown at me (see below for my dx/tx and status).

I got through it and you will too.  You will probably lose your hair (I did, but it grew back and yours will to,  and while I was a long hair girl before, I'm keeping it short for now and LOVE it--have gotten so many more compliments on this do than the old tired one I had forever!); you may lose your breasts (I finally did, last week, but I have nice new perky ones that aren't trouble at all); you'll probably feel like crap sometimes (I did, nauseated no matter what med I took, but I lost weight and that was okay!); but the good thing is I show NED today.  No evidence of disease.  For me it was all worth it. It was scary, I was angry and fearful at times, but I got through it and here I am, living my joyful life, and you will too. 

You will come back to another chemo thread in the future and post exactly to another new group what I've written here. I promise.

Hugs

Claire

peace777

I was brousing to see what info I could find on what to expect from chemo.  I will start chemo July 30th.  It came to me as a surprise.  The plan was lumpectomy,radiation and hormone therapy.  Then I went Tues to see my oncologist for the first time to go over everything and get my onctype test results.  wow  score 32  I did not expect that!  Not me!   So I now have chemo at the beginning of the plan.  She told me what kind of med but I cant remember.  I go july 17th for my chemo instructions. For some reason this makes it more real to me.  And loosing my hair is over the top.  I know I will be fine but I am glad I came across the thread with all of you who are getting chemo in July.  I was haveing a hard time deciding  whether to take time off work or not.  I decided to take time off until I know how I am going to take to this physically.  I went to look at wigs....wow tried a couple on had to leave.  Not so much afraid as awkward, strange weird.  I have a great support group family,friends and church.  Thank you for letting me pour out some feelings to women that totally understand. 

Nocompromises2013

Peace.

I went to try wigs on a week after Mx. I left the store in tears

I revisited yesterday and was stronger. When I go back there in 2-3 weeks I will be ready. Wig is already chosen but not purchased

You will be stronger too and don't forget maybe get some variety mix it up a bit . Wig one day , scarf the next ?? Who knows

Clareinaz - thank you for your encouragement - u are confusing me jumping threads

I look forward to paying it forward to future chemo cohorts too- just need to reach sept 13th yay.

honeybunny96

NC, glad the sennacol kicked in.. nothing worse than... well ok there is.. but glad that's working (hugs)

Sori, thank you (hugs)

Peace.. this is a great site to browse to get the real information.  try to stay away from google in a time like this.  You will find way more bad than good.. and good is what you need (heck we all need).  If there is anything we can help, please ask. No question is a dumb one.  We have all been there, done that.  Ok well. I only just had 1 tx so for of chemo..so I have no clue other than I am tired right now.  Will be a nap time as soon as I can pull away from the computer.

How is everyone this rainy (here it is), morning? 

love n light to each of you.

GraceB1

Hi Ladies,

Had my port put in yesterday morning and while it was uncomfortable it really wasn't too bad. When I complained even being under twilight sedation they put me in I got more lidocaine. Sore afterwards though. Started chemo that afternoon. Sucked on popsicles while the red devil was injected (to keep down mouth sores). In my mind I've changed the name to red army ants - marching through the veins to kill cancer. 1/2 hour of saline then the cytoxin. I was sleepy yesterday and very emotional, probably due to a lack of food until 1pm. Today I'm feeling pretty good but a bit jittery from the steriods. The port is feeling much better today. So glad I didn't get nausiated as we have a 3 1/2 hour drive home.  I feeling much more optimistic this morning. :-)