Chemo in July 2015

Batesburg

How many of you have a port? I was scheduled for one this morning and I didn't even hear the alarm....very very unusual for me- must have been the Ativan I took last night to sleep.

Anyways, have to reschedule- but curious if its worth it.

Mel5

Hi All!

I'm new to the group -- glad to have you ladies on this journey with me. I mean, if we have to do it, it's better with friends!

My first chemo treatment was July 9. It was supposed to be Taxotere & Carboplatin but insurance denied the Carbo (GRrrrrr!) so Cytoxin was substituted. Hopefully this will be worked out by my next treatment next week - July 29. I'm on a 3 week cycle for a total of 5 treatments.

I was diagnosed with Triple Negative BC, the first of my family (and I'm the youngest) with a cancer diagnosis, on May 11 after a routine mammogram picked it up. Alleluia! I learned it was very aggressive and the highest grade. This was not good, but it was small -1.9 cm - and we were optimistic. I had a lumpectomy on May 29, with clear margins, and sentinel node biopsy, which was clear - another Alleluia!

I did have the Neulesta shot the day after chemo. On day 3 after chemo I felt like I'd been hit by a bus. I like my mother-in-law's description of a "body slam!" Every muscle and bone hurt and I felt like there was a 100lb weight on top of me. However, by the end of the day, I pushed myself to talk a very short walk outside. On day 4, I felt some better but still not able to work. Day 5 after chemo had me back at work but I must admit, it was tough to focus and concentrate! Things that I normally did without blinking an eye felt like monumental tasks.

Back to the Neulesta -- the pain was worth it because my white blood count is high and that's the purpose. I'm to receive it after every treatment. Next time, I'm definitely trying Claritin with it! Thanks for the advice!

So, now I'm on day 14 after chemo. I saw it referred to as the "BIG SHED DAY" somewhere. Oh.My.Gosh. I had gone into the wig shop before my treatment and told them I'd be coming in a little later. She told me it would be about 14 days after the first treatment ...they could almost put it on the calendar. Well, I mentioned this to my oncology nurse on July 9 and she was a bit put off by it and said that just wasn't so. WELL...that goes to show that the professionals don't necessarily know everything!! It is coming out in handfuls. My best friend is meeting me at the wig shop this afternoon! I've already gone from long to a short bob, but will probably hit Great Clips Saturday for a super super short cut ... not sure I can shave it although that might be best.

Once chemo is done, I either have to have double mastectomy or radiation. Still thinking, reading, researching that....

I'll continue to post...and read your posts....and comment.... we're in this together! My best to all!

Mel5

JillyB

Batesburg - I have a port and I love it. I've seen other patients who have to get an IV every time they come in. To me, the port seems more efficient and doesn't hurt.

Well I went through my 2nd session yesterday. Wasn't as bad as the first one. Hoping it's a sign of things to come ( or not come). The only side effect right now is not having an appetite, but it's only the morning after. I go through each day thinking what side effect is coming next. I need to get out of that habit, but it's kind of hard not thinking about it because it's right in your face.

I'll be posting again tomorrow with the hopes of a good day. Good luck to all.

Jamie09

Hello Ladies -

I was diagnosed with a recurrence in June, and underwent surgery the beginning of July.

Just found out that I am starting 4 cycles of TC on Wednesday (7/29). I don't have much time to prepare .... Anyone else doing (or have done) TC x 4? Any advice and words of wisdom

madrew

Hello everyone--Day 10 after my first round of TC. I have energy, am mentally positive and physically I feel darn close to normal. My WBC counts were VERY low so I've "cancelled all my party plans" (my doctor's words) this week and have been taking it easy at home. I'll retest tomorrow to see if they've rebounded. I'm sensing a shot will be in my future for the next round. I have however been hit hard by the mouth/gum pain. My face skin is also super dry and my lips are slightly swollen and feel like they've been burned badly. It's disappointing because I had done "everything right". I will definitely be even more proactive on this front next round. Thinking of all of you wonderful ladies and appreciate your posts. Hoping you all have a good day.

Peabrain

Batesburg -

I assumed I would get a port but my onco prefers to avoid the extra two surgeries (putting it in and taking it out). He also has concerns about possible complications with ports - infection, disruptions to blood flow, etc. His medical group (and it is a major one around here) tries to just use veins for the entire treatment for all their patients. I am a little nervous about this because with the number of lymph nodes that were removed on my left side, that only leaves my right arm for everything! However, it has been OK so far. If my veins get uncooperative then, he will have a port installed as Plan B.

Everyone - The first treatment of AC and then the Neulasta kicked my butt, lots of nausea, heartburn and pain at my surgery site. I didn't realize that I should keep taking the Claritin! I only took one right before the shot. Will definitely try that next round!

10 more days of hair

Zuwali

Today is the 14th day after my 1st chemo treatment. I shaved my head the day before I started so as not to deal with losing clumps of hair. A little shocking at first, but I bought myself a lot of hats and scarves (but no wigs). I get more complements on all of my hats than I ever got on my hair! Maybe I'll just keep my hair super short even after this is all over. My hair is starting to slowly grow back so haven't lost it yet - at least not on my head. I did notice that my pubic hair was falling out, which just made me laugh. I have had various side effects but they all seem to only last a few days, except for the bad taste in my mouth. The Neulasta was the worst. I felt like I had been hit by a truck. The bone pain finally started to subside on day 4 after the shot. No one told me about Claritin - definitely going to try it next time. A few days ago, my hands starting looking very red and swollen. They also itch horribly. I can take Benedryl at night but not during the day as I am trying to keep working. Does anyone have any suggestions for helping with this SE? Next Thursday is chemo day #2. I've never bought so many OTC medical products in my life (Claritin, Imodium, lip balm, hemorrhoid cream, etc.). Love having this outlet during this hard time. Good luck to all of you!

6feetover

Janet: my treatment team didn't even give me the option of NOT having a port. They flat-out refuse to do AC chemo through a vein...

6feetover

@all the new folks: so glad to have you here with us, even though it's for such an ugly reason! Safety in numbers! I've already begun "the crash" after Round 2, which really sucks...

Italychick

Claritin is great, and is a basic anti inflammatory, so maybe it would also help with the hands? Not sure.

My son says it can spin him up, which is the opposite of what happens to most people, but just good to know. When I took it, I took it in the morning. Same for Pepcid AC.

theearthlaughsinflowers

Day 14 for me~ back in for AC #2 tmrrw I've been ok, managing to work, just still so tired most days. I'm able to pull out a few hairs but not shedding yet. I am flaky (never was before) though has that been a precursor for anybody else? My son has a college friend visiting and my daughter is away until Sunday~ do you all think I'll be able to wait until day 17 to shave it all off? And what have you all used to shave or buzz? My hairdresser was going to do it but she isn't in until Wed and I can't imagine waiting that long!

For all of you that have already had your second treatment, did the experience or the SE vary much from the first?

gargengirl09

Just checking back in. Second AC didn't go as well as the first. The Decadron gave me a horrible migraine type headache. So, they didn't give it to me for the second round. That was a mistake. Ended up in the hospital for a few days. I'll be doing the Decadron for rounds three and four! I've been doing acupuncture all along, and it really helps! I'm feeling good now!

Hope everyone is having a great day!

hartrish

batesburg: I am glad I got a port. I put the numbing cream on 1 hour prior to my treatment and cannot feel when they insert the IV needle for my chemo. Wanted to save my veins from the harsh chemo chemicals. The port placement procedure was worth it.

Mel5: welcome to the group. I start taking Claritin on the morning of chemo and continue it for 5 days. I experienced no bone pain so I guess it worked.

Jillyb: I hope you do not experience any side effects this round of chemo.

Jamie09: I am also getting 4 doses of TC. I did ice my hands and feet during the taxotere infusion to help prevent neuropathy. So far I have not experienced any neuropathy. I have chemo treatment 2 next Thursday. I also chewed on ice the whole time during my chemo infusion and did not have any mouth sores. Gargling with baking soda and salt solution frequently the two weeks after chemo.

My neulasta shot worked great. My blood counts have been normal each week after my infusion.

I hope everyone has a wonderful week. Hugs to all!!!!

Suzanne1971

earth laughs: I, too, wonder how the side effects will be in subsequent treatments. My friend (a NP at the hospital I am being treated at), says that it bodes well for me that my SE were manageable during the first cycle. She has seen hundreds of patients that are undergoing chemo, and I trust her. I hope she's right!

My subsequent doses will be less than the 1st, so I hope that contributes to an easier run of SE.

My 2nd infusion is We'd, so I will definitely report back

Glad to have found this board!

Want2Bcamping

My 2nd infusion is also Wednesday. I'm curious as well to see how the SE are in relation to first. Tomorrow is my big day - will be shaving my head. Hair coming out in mass quantity. Taking the day off to be able to do this. I'm ready - but sure some tears will be shed. (By both myself and DH).

FreeandFlying

Just wanted to say thank you everyone for your responses. Second AC infusion today and decadron was omitted due to headaches shakiness mood disturbances etc. blood cell counts all normal just a bit low on RBC and hemoglobin. Very tired and feel overall malaise and slight nausea. Hope to sleep.

Goodnight. You are all amazing.

Ps Neulasta never an option. I get it day after infusion

Yoxter123

hi everyone ....haven't posted for a few weeks but have been reading posts when possible.......have been slammed by SE in both rounds of AC so far.......finally getting all my personal tricks in place to fool body into eating something when Everything tastes of salt or starting the dreaded D !! My first course was beginning of July and I am headed back to the chemo "bar" on Tuesday for round three! So many hints from previous posts have helped me and want to repeat them here for others..

. Bicarbonate and salt mouthwashes really help keep mouth sores at bay

. Chewing ice ten mins before ,throughout red devil infusion and ten mins after has helped me prevent mouth sores

.Zuwali- Red hands It is VERY important to closely monitor this and let treating doc know as it can lead to other problems - there was a link on main discussion board here about a discussion paper that came out earlier this month on how urea cream 10% used regularly can help with this...... Research and discuss with Onc nurse /Dr - I had this quite badly after first course.... Second course held on to ice cool blocks thoughout infusions and later if hands felt hot used urea cream patting gently onto palms and soles of feet not rubbing and haven't had a problem this cycle...please check with your doc on what he/she is happy with

. Clarytine pre neulasta and four days after shot have totally saved me from bone pain........not game to try without as even with clarytine have dull leg bone ache ! Blood count neutrophils amazing response after first neulasta ....tripled my pre chemo score so any SE def worth the result!

. What is it with this hair thing!! Head hair fell out exactly 14 days almost to the minute after cycle 1 ...... Leg hairs are still growing ??? Having to shave them a aargh .....speak kindly to my eyebrows every day hoping they might hang around a while longer ........

. Have a port and with 16 courses of chemo to do am really pleased to have it .....Bc side had 25 node clearance after positive SN so my right arm is off limits port is easily accessed and having read of problems ladies on here have had with infection,clots etc I'm careful with it making sure to exercise that arm and neck gently to keep everything loose and mobile.

Can't believe how many have joined this group in one month - the support and information,advice and positive thoughts from everyone has been the most positive uplifting experience for me amongst the total shock of diagnosis and surgery..... The joy of the internet........ I can feel close to people in the US and the UK as I sit going through the same thing here in Queensland Australia

So I send gentle hugs, positive thoughts, and the absolute belief that we can and will DO this with the love support prayers and inspiration from each other

Good luck to anyone heading to the chairs this week positive thoughts coming your way from not so sunny at the moment Australia!

hartrish

want2bcamping: shaving your hair is emotional. I took my husband, daughter and son in law with me. They have been so supportive of me. My daughter held my hand during the shaving which gave me strength. A day later I am at the shopping mall walking without anything on my head. Trying to keep positive about the whole thing. I keep thinking that my hair will come back.

I am sending you strength and encouragement today.

Want2Bcamping

Thanks Hartrish! This morning my hair looks like "road kill" on my head. Helps me feel this is definitely the right time and thing to do. Will be doing it later today when my DH comes home from work.

There are so many strong women here! Helps me know I am not alone through all this. Thanks to you all

mdoc524

Hello all - been out of the loop trying to enjoy vacation with my family - could not have picked a better 2 weeks weather wise..

Welcome Welcome to all of our new members - JustLikeSamantha, Tonia52, Thunder7, Suzanne1971, Mel5 and Jamie09- sorry you have to be here but glad you found us... I see that some have already started treatments - thanks for jumping in and sharing some of your experience..

Jamie09 - so sorry you going thru this again ..

Tonia52 - not sure if I missed this - if you want to be included on the top of the page list - can you share your Start Date for Chemo and Chemo Meds you are on

Alice12 - Neulasta shot was not an option for me either - I start on 7/31 and was told I would get the shot the next day after all 4 rounds of AC but not during Taxol

PeaBrain - love love love your blog - keep sharing!

KnittingPT - thank you thank you so much for your extremely helpful tips and sharing your experience! We really appreciate it .. Hope you are doing great!

Melinda531 - so so sorry you were in the hospital but glad to hear you were able to go on your beach vacation - hope you were able to enjoy and relax SE free.

Mel5 - I chose double mastectomy - if you want to chat send me private message

Today is my last day of a 2 week Vacation! So sad that it has ended but anxious to get my treatment started and over with - all of the sharing on this forum is just so awesome I know we will all make it thru .. Stay Strong!

Mary

Peabrain

Hello, everyone.

Thank you for the positive feedback on my blog post. Today is day 5 and I finally feel human again.Here is the one from day two of my first treatment.

Tuesdays you kick back a few steroids, drop by the treatment center for a little hair of the dog, a shot of Neulasta to recharge your bone marrow and replace some white blood cells. You take some Claritin ahead of time so your bones won't ache so bad. They inject your arm so you don't have to chug it.

The AC was cattywampus so the reception area was freezing along with me and some parts of the treatment center. They were out of blankets, but fortunately Kelly scored me one from a fresh delivery before my cohort got too excited.

My continued nausea earned me another visit with the doctor and a walloping IV of fluids, Kytril and an old school anti nausea med, Compazine. No more nausea, no more consciousness.

We drive to the pharmacy and my DH leaves me in the running car. No one steals me and I don't bark. The car shuts off and I think, darn it's going to get hot in here while he's in the store. Only we were home and I had missed all the parts in between.

At home I visit with my brother, small dreams rising around his sentences. Another two hours of deeper than sleep and the fog starts to drop off. No getting around it, I am a real live wire.

dchavy

Hi all,

My second round of AC has been postponed a week due to random high fevers. 2 trips to the ER in 24 hours and they don't know what is wrong with me so assuming the fever is viral.

My hair is still shedding but so far no huge clumps. I broke down and buzzed it, but left bangs just for fun to kind of pay homage to my punk rock days when I was young and didn't have a care in the world. I am at the point though where I just want it all to come out. I'm tired of waiting and I'm afraid that I jumped the gun with the clippers. What if I don't lose it all and I cut off my long beautiful hair for no reason.

I feel like I'm anxious all the time and feeling that I don't know what is lurking around the corner to hit me next. I'm on day 17 and still having new SEs from my first AC treatment. I'm disappointed that I couldn't have my second treatment because it just prolongs the process.

I will spend the next few days trying to keep my fevers in check and running my fingers through my bangs and throwing away strands of hair and waiting for my next infusion so I can start the cycle over again.

Thanks for letting me vent

FreeandFlying

dchavy what do your blood counts look like?

6feetover

peabrain:

We need a "notworthy" smiley for you and your blogs! Fa fa fa fa, fa fa fa fa fa fa, etc...

I understand that all too well. Put my head down for a second and suddenly 3 hours have passed. How in heck did *that* happen?!

6feetover

dchavy:

I keep wondering the same thing, i.e., did I jump the gun in shaving my head? It's now 17 days out from my first AC round and my Sinead-y stubble still feels like it's firmly rooted in my scalp. I can't really tell if it's growing anymore, though, so this may be its last hurrah...

FreeandFlying

I'm day 16 post AC and only a few strands of hair on my head are falling out. I know that it's coming though.

Italychick

everybody is different. Mine went on day 24, and I was so hopeful.

dchavy

free: blood counts are normal. There is nothing to indicate what is going on. Just lucky I guess.

6feetover

Italychick:

Thanks for the tip! That had to've been upsetting...

melinda531

Hi All,

Enjoying my last day of beach vacation......although I haven't enjoyed this year nearly as much as usual given my pre-occupation with my hair falling out! I went and got it cut real short yesterday and plan to wear my wig when I go back to work Monday. My whole family loves my haircut and I must have been ready to do it because I didn't even shed a tear! But waiting for it to all fall out is torture!!!!

I have to say the worst side effect I'm experiencing so far is my loss of taste.....it's not so much a metallic taste as much as nothing tastes right! I'm trying to find the magic foods that will get me through the next few months of this but so far not much is working. Salty seems to do the trick the most but iced tea and lemonade are about the only drinks I can stomach the taste of right now. If anyone has any tips please share :-) I've heard for some this side effect only lasts the first week after chemo but I think mine's here to stay the course so I've got a way to go with this yet (last treatment should be in October).

Hope everyone's having a great week!