Starting Chemo in April 2014

ColdInCanada

LADIES! Whew! I have been MIA - that Carboplatin reaction + all the extra meds + chemo meds in general = I have been SLEEPING for the past FIVE DAYS. But as brutal as The Dark Place was, I am SO HAPPY. Not only did I survive all six rounds, I totally KICKED IT.

I've been trying to catch up here. Congratulations to all of you who have reached the finish line (waving my pompoms for you MomMom, jhodro, and Longisland, and any others than I've missed!)! Hooray! I'm sitting here celebrating with you. When I get my energy back, I'll do some Happy Dancing in your honor.

clarrn - I am SO SORRY you're stuck in the hospital. I remember the worst part of it was missing my babies and the complete and utter BOREDOM. Hopefully they get everything sorted for you soon.

Mscaruso - I second the getting a port advice. It wasn't fun to have it put in, but now I barely even notice it's there. And my poor veins are sore and tired just from having my blood work done - I bruise every single time now, no matter how small the needle.

BlessedMe - Welcome! The fatigue with TCH is NASTY, but it's temporary. I was a runner before cancer - I ran my first half marathon in January - and now it takes me a while to work up the energy to get off the couch to pee. But this too shall pass, right?

footballnut - We switched to organic skincare products right before I was diagnosed with cancer. My daughter suffered from horrible eczema that just wouldn't go away. Here are couple of Canadian companies I'm particularly fond of:

http://www.rockymountainsoap.com/

http://www.julietsroom.com/

I also REALLY like The Honest Company for their hand soaps.

www.honest.com

Can I just say that I love you Gals? I love how you all lift each other up through everything. I feel like I'm a member of a Super Hero club. I really do.

applepop

Hi everyone. I haven't posted much and it has been a while since I have posted, but I have read every single post. Thanks to everyone who has taken the time to post about their experiences. I am sure your posts have helped many.

 Congratulations to those who have finished or will finish chemo soon. My last chemo (#6 TCHP) is tomorrow. This has been one heck of a ride. I am extremely nervous about tomorrows treatment. I am already exhausted and do not look forward to the dark days that lie ahead. At least I know the dark doesn't last forever.

Praying for you all and wishing you all the brightest of futures.

 

Longislandl8y

C*O*N*G*R*A*T*S  MOM**MOM!!! Your granddaughter did an OUTSTANDING JOB on that sign!!! I too will move on to Rads in about 4 weeks.  

HollyHope, thank you so much for the hopefilled post!!! About the hair and the tamoxifen!!! WooHoo! Happy for you and more hopeful than before.  I was worried about how much hair I'd have left for my daugther's Oct. wedding, but sounds like it will hopefully be filling back in by then.  And I was more than worried about SEs from Tamoxifen, now I have a little less anxiety.  

Make Lemonade, I am sorry you are having a rough time I hope things resolve soon for you.

BlessedMe that was a lovely introductory post.  I am glad you are benefitting as the rest of us are from the personal experiences and sisterhood here.  

Thanks for the congrats everyone.  I would like to invite anyone who is interested to friend request me on Facebook.  My screen name is Jeanne Musella-Fling.  

MommyQ

It's 80 degrees and sunny today. WHAT? But it's July!!! Yes, it's unseasonably pleasant for us today. Normally, it would be 95-100 now. Just enjoyed a beautiful top down ride to the hospital for my Neulasta shot. Now I'm just dreading the muscle aches that are sure to come! I'm starting to feel a little tired, so I'm trying to catch up on this board before I go into chemo-induced hibernation for the next 3 days!

Lakegirl1: I too need lots of rest stops when walking, starting about 5 days after infusions, and they last about a week to a week and a half. I think it's anemia. I also had one day when I felt lightheaded. I was outside in the heat and humidity and drinking a hot Starbucks mocha. I went inside the air-conditioned Starbucks, took my pulse (120 bpm!), stopped drinking my mocha, and downed 16 ounces of water. I felt a bit better about 1/2 hour later. I've been minimizing caffeine since then and making sure keep hydrated & cool. Seems to help.

Longislandl8y: Congrats on finishing chemo! Yay! You're so lucky you got to keep a lot of your hair! I'm completely bald from TC. Best of luck with rads. I will be joining you in that about a month later. 

Swissmiss: Not the A/C again! Hope they fix that for your quickly. Glad you were able to move up your sim.  Let us know how that goes.

BlessedMe: Welcome! Glad to hear this board has been helpful for you. It's so great that we can share our stories and help each out!

HollyHope: That's reassuring to hear you're getting your hair and energy back, and Tamoxifen is going well! Woo hoo! Things will get better!

MomMom: Congrats on finishing chemo! Woo hoo! That was so nice of your grandchild to make you that poster!

clarrn & Everforward: Sounds like a lot of us are having the issue with the high pulse rates. I have it every cycle, from day 5-10. My MO said not to worry about it unless there's bloating in the legs/arms, chest pain, difficulty breathing, or lightheadedness. On the flip side, I noticed a super LOW pulse rate on the night of infusion #4 of 49 bpm! Freaked me out. I've never seen my pulse rate drop below 70. Ever. In my entire life. Last night, after infusion #5, I measured 55 bpm. Still low but not as frightening. It's working it's way back up today, around 80 already. Do you (or anyone else here) get the super low pulse rate on the night of chemo?

Mscaruso: With a year of treatments remaining, I recommend you get the port, also. I didn't like it for the first 3 days because I had some muscle aches from the way the doc positioned my head during the surgery, but now, I'm glad to have it for my infusions. Much less painful that finding a vein in the arm!

MakeLemonade: Congrats on coming up to the final Taxol! Sorry to hear about the cellulitis. Hope the meds start working soon or they get you something better.

ColdInCanada: Congrats on kicking 6 rounds! 

applepop: Early congrats on finishing! Last round of dark days to be followed by much better days!

brigadoonbenson

I am so glad I got my port.  I went for my CT scan on Mon and left my powerport card in the car.  They had to use my veins and even though I have great veins they hit a valve 4 TIMES!!!.  Finally got it on the 5th stick but I almost jumped off the table to run to the car and get my card.  Ass flashing be dammed.

MomMom - Congratulations on your last chemo. 

clarrn

Lakegirl -  PICC line clot  so 3 more months of injections.   Apparently it's super rare to get a blood clot while on blood thinners.  I am pretty special.  I putter all day in here.  I start with making my bed with new linens and hospital corners,  then I wipe down everything with the antiviral wipes, then I shower, then go for a walk.  My first of 4 everyday.   I get to go home tomorrow !!!   They switched me to oral antibiotics and hope my veins heal enough in a week for chemo.  I hope so too.  5 more blood draws, 5 more taxols.... come on veins!   You can do it! 

Footballnut

hi all!

Congrats to all for making it through. We are either finished or in the homestretch!!  Woo hoo

As for me my onc changed me from taxotere to taxol which I will have infused for the next 5 weeks. This means that I'll finish chemo the wed before Labor Day weekend instead of mid august 

Yesterday I had my first taxol with my 2nd herceptin which stays on the 3 week schedule. In between herceptin and taxol I get Zantac, Benadryl and a steroid. I was so zonked!!

So far so good but no poop today so I took my meds to try and stay ahead of the game

I also got Tylenol 3 in prep for any pain because I hated the percs

I have been told by my onc, nurse and pharmacist that this should be much easier on me. 

I no longer need the neulasta shot so am hoping for the best

Tomorrow night we are going to try and have a band rehearsal. Can't wait!

Wishing a good evening to all!!

Timbuktu

Sheesh, somehow you are all adorable!  I'm not posting my pic, for sure!  

Tinkerbells

Clarrn, footballnut, we finish about the same time. I'm done 9/2, then probably rads.

Thank you a for the advice- will call MO and discuss. She and I don't always see eye to eye, so let's see how it goes.

Sandra

Ddkath70

lilyrose53, you know what I'm talking about when I say you can't go outside, never mind a walk or exercise. It was 114 today!! Not sure why I picked today to go out to the grocery store, but I did. The fatigue is bad, I know the heat doesn't help, but I feel like I'm 90 years old. At Safeway They must have asked me 1million times if I want help out, which was weird to me having grown up and lived in NJ my whole life, and today I finally said yes. As a matter of fact, I could use some help out! Lol. 

Congrats to all of you who are done!!! It must feel so good! My last one is on Tuesday and I'm counting down the days!!! One more meeting with the dementors ( I love that BTW). 

Long Island good for you for keeping your hair ! Mine never completely fell out out, don't get me wrong, I'm mostly bald, but I have more like a spotty crew cut and it's growing so I'm not complaining. Lol. 

I've been really emotional this treatment, it's either it took this long to catch up to me or, I'm just exhausted and done with every aspect of this nightmare. But, I'm gonna shake it off come Tuesday and celebrate the last and final treatment!!!

mmtagirl

congratulations to all in finishing up !   Clarrn, so glad you can come home today.  I remember my 5 days in hospital after round 1 were the longest and most boring days. I was begging everyone including the phlebotomists and meal servers to find a way to get me out of that place!  FBN, I will be right beside you on the prolonged chemo timeline due to the switch to taxol.  My last treatment is September 16.

Question, did any of you take glutamine for neuropathy?  I am starting it and received my powder in the mail but can't remember how much to take.  1tsp = 5 g and mix with water or juice 3x a day for 5 days is what I recall.  Sound right?  I will call my nurse but thought I would check with you gals.  Thanks!

linda505

mmtagirl - 10 g 3 times a day on the lglutamine.   I used juice - just a small amount mixed it in and downed it.  I did it the day before chemo and for the next week.   If I started feeling any tingling or numbness any other time - I would do it for more days then.  I think some did it every day but once my dose was reduced on my chemo the neuropathy basically stopped for me anyway.  

mmtagirl

Thank you, Linda.  I am having some mild symptoms in hands, feet and face on taxol.  Hoping to keep it at bay.   Have a good weekend.

linda505

Oh Mmtagirl - I also did B12 and B6 for the neuropathy -and am still doing those daily.  Just thought I would mention that as my MO also suggested both of those - hope you have a good weekend too!!

Tinkerbells

mmta - are you taking b6? I have been and only transient neuropathy for me so far.

Swissmiss

Good morning! It feels so great to read all your posts and sense the hope and relief and the pride...even with some challenges thrown in, we are all getting through this! Soon all of us will be saying goodbye to the dementors and hello to our hair  

I had to call my breast surgeon today to follow up on getting my port removal appointment, and the receptionist reminded me I have my six month follow up visit on August 11. I cannot believe I had my surgery that long ago...I truly feel like I lost six months of my life!  This has been such a foggy and treacherous journey...I look forward to putting it in the far away past.  Hoping to get my port removed on the day of my follow up, one big step closer to completing the journey.

And I continue to obsess about hair...yes, it's only 9 days since my last chemo.  Even nose hair would be welcomed!  Any sign of hope would be wonderful, but watching hair grow is about the most hopeless activity around.  I need to find something more productive, I know . FBN if I looked as cute as you in a baseball cap, I think I'd be a little more patient!

Congrats to all who are done with chemo! I'm thinking of all who are still experiencing SE's and challenges.  Thank you all for sharing your journey with me

Hugs to all!

Footballnut

hi sisters!

I am soooooo tired! Hard to sleep. Get hot then I'm cold then I'm hot!! Today woke up tired. Forced myself to run some errands now I might just lie down for a bit. I have band practice tonight so need some energy!

Atleast I popped today!  Funny what we r thankful for these days!!!  Lol

I'm also so tired of others telling me what to do or sometimes what they think. Examples;

- there's a cure for cancer you know. The corporations don't share because of the $ involved

- don't eat that. It's bad for you

- don't drink that. It's bad for you

Ugh! I'm eating the burger if I want to or the salami sandwich or the chips. I haven't had soda in weeks so I might have that too. Arrrrrgh!!!!

Okay. It's out of my system now. I think I better go lie down for a bit!

Atleast nfl training camps are open!! FINALLY!!!!!!!

Ddkath70

balloon wall update: some of you may remember my post from awhile ago, my husband built me this wall to help watch my progress and to give me some motivation to keep truckn through this nightmare. Well, I'm almost at my last treatment and I would say it's really helped. To see all the days that I've preservered and some with a struggle is all very empowering. 

Congrats again to all of you who have finished!

BlessedMe

Good Evening All,

Thanks for all of the welcomes and kind words. You ladies are the refreshing part of some very long days.

Congrats to you MomMom and Longisland for finishing chemo!! It is a day we all look forward to and I keep telling myself just 3 more weeks and I will be DONE . Guess then I will then start counting down the days till the last Herceptin.

SharonDe -  Tired ladies club gives new meaning to TLC. Made me LOL!!

Mascaruso - I had a love hate relationship with my port for over a month. I did not like it one bit but I am now so glad I have it. Now I don't even know that little jewel is in there. I get so stressed after so many have missed finding a vein over and over. Why is it that they can call the IV team and they get it the first time? What's with that? Are they not all trained to do it the same way?  Some say you can keep the port up to 10 years and that just might me be because I had nodes taken on both sides.

Brigadoonbenson- I would have been out to the car in a flash to get my port card! Pun intended...

MakeLemonade - How are the antibiotics working? I hope you are feeling better and congrats on your last Taxol next week.

ColdInCanada - Yes, you totally kicked it!! Hope you are getting stronger everyday and ready to celebrate! Let us know when your energy starts to come back. I am on the same treatment plan and am very interested in when you start seeing the fatigue subside. I am scheduled to fly from Atlanta to Seattle the 4th week after my last treatment and hope I have the energy to get there...Congrats!!

Applepop - Congrats on your last treatment today!! Hope all is well and I wish you few SE's in the days ahead. I so get the exhausted feeling. Cheers!!

Clarrn - Hope you are resting well at home. Sorry you are going through so much! Praying your veins hold up.

Ddkath70 - I remember seeing your balloon wall and it is looking mighty fine.

I had a wonderful day today! My DD came over with my 6 year old grandson. We had fun at the park then went to a ceramic place and painted our hearts out. I don't see him much between treatments so it was great to talk to him as he has such a honest outlook on life and delights my world.  

I hope you all have a most wonderful weekend!

 

 

mmtagirl

MSC, I haven't tried the b6 but I think I will. My mom took it when she was on this treatment plan and it worked.  Started the glutamine yesterday.  Thanks for the suggestions.

Timbuktu

football, that "there's a cure for cancer" deal always baffles me.  Don't they know that everyone gets cancer?  It's amazing what people will believe.  OTH, hopefully we all will be cured, by these treatments!  Many are, every day!

Golfingirl

I've been off the radar since my last treatment. Riddled with fatigue and muscle aches. Its sure apparent we all have been experiencing that cumulative effect. I completed round 6 yesterday. My last. Then surgery on Sept. 4th and radiation to follow. One more PET scan before surgery. Fingers crossed it hasn't changed. 

Thanks to everyone who have offered me support. You are an amazing bunch of women.

Swissmiss

Hot flashes and night sweats are running my life  I kept track, and in the last 24 hours I've had 11 "episodes."  Five of those were during the night, interrupting my sleep.  This seems excessive...what should I do?  I'm not scheduled to see my MO anytime soon; should I call him?  Or perhaps my gynecologist?  Or is this a normal, passing thing I should deal with?   Have any tips?  Ugh...I am sick of being completely soaked with sweat all day.  

clarrn

I am home  switched to oral antibiotics because of my terrible veins.  Will see my oncologist Tuesday to see if I have to miss another chemo.  Trying so hard to take it easy but just want to do so much that I missed out on the last 9 days. Thanks for keeping my spirits afloat while I was in 'detention'!

clarrn

Swiss-  I am having a similar amount of hot flashes this week although I missed chemo so I thought it might be bc of that.   Do you have the moisture wicking pjs? I think even Walmart sells some.   And I have started putting 3 extra cotton sheets on top of my half of the bed. .. that way I sweat through one and just pull it off!

Footballnut

hi all!

Each day since taxol my fatigue has been increasing but thankfully no pain!!!  Taste buds are disappearing and I too get hot at night. Ugh!

Since my birthday is Tuesday I treated myself with KFC, fries and smarties. Oh and a caffeine free Pepsi

No junk for another few weeks!!

Had band practice last night  it was awesome!!!  

Hope that everyone has a great weekend!!

mmtagirl

5 bouts of night sweats a night seems about right if I am "normal". Swissmiss :-(

Ddkath70

you can put me down for night sweats too. I live in AZ so I keep it cold in my bedroom at night. My hubby calls it the refrigerator. Lol. Sometimes I take Ativan just to sleep through the night. 

MakeLemonade

I ended up having my surgical breast aspirated on Friday.  It looked like the antibiotic was finally kicking in when I woke up Friday morning as there was less swelling, didn't hurt as much and slightly less redness. And even seemed a little better from the time I woke up to the time of the aspiration in the afternoon.  However, it got a little more swollen after that and the redness is still there.  I figured that was normal as, after all, it did get punched with a needle :-). However, it isn't better now and feels a little worse again. 

I had forgotten that a biopsy or aspiration hurts for the first 24 hours!  Haven't really had to deal with pain while on chemo ... Just feeling like crap half the time.  So this surprised me. I should have felt really good this weekend after the blood transfusion, but now have to deal with this.  

Surgeon wanted me to call him on Sunday if there was still swelling and redness as he is on call all weekend.  Guess I will be calling him in the morning.  He will put me on a stronger antibiotic.  

Really, really hope this doesn't delay my last chemo treatment on Tuesday!  Just want that part over.  I think this WILL mean I have to delay the radiation simulation I was supposed to have this coming Friday.  

I am so disappointed about that.  Not only do I want to get this over with, but I also take part in a yearly event that happens in October.  This whole time, the thought of getting through all of the chemo and radiation in time to go has helped me get through this.  And the timing would have been tight anyway if all went well with rads ending 2 weeks before I was to fly to California.  

Now .... Who knows.  There was even talk of cutting me open again to clean things out if antibiotics didn't work. Won't have the results back from the aspiration until Tuesday, so maybe am being premature.  But things never look good at 2am! Hot flashes get me up several times a night and sometimes I can't get back to sleep again :-)

MakeLemonade

BlessedMe - re IV teams getting a vein first try - Even the IV teams had trouble getting my veins. I had a pelvic MRI in January that was supposed to be with contrast.  The techs there couldn't get a vein and called the IV team.  She tried for almost 1/2 hour and still couldn't get it.  Ended up getting that MRI without the contrast.  

When I had my pre op breast MRI in March I warned them that I was a "hard stick" and they would need someone from the IV team.  I drank PLENTY of fluids the day before and the day of and kept my arms and body warm by keeping on my winter coat until it was time to bring me into the room.  At that point they packed the inside of my arms and the backs of my hands with rubber gloves filled with warm water and covered me in warm blankets.  Took it still took 2 IV team gals 20 minutes to finally access a vein!

All of that is why I am SO thankful for my port!!