February 2014 Starting Chemo Club

lago

Ula sounds like you are getting treated where I got treated. The pharmacy is always the biggest hold up! I did have a port and so glad I did. Granted I had to do Herceptin for a  year but I know some others that only had 6 infusions and their veins were ruined. It's really a bit easier. I never had problems with my port. Only thing is you will have to get it removed.

tangandchris

Ula-I had my port put in on Monday..I recommend it. The nursed told me yesterday that the port is so much easier for them because of how dangerous some of the chemo is if it leaks on tissue. Not to mention how hard it is on your vains.

I had my 2nd treatment yesterday as well. Feeling 100's time better this time than the first. Hopefully this keeps up! I will be getting emend next time though. I started feeling queasy while I was getting the treatment, so they gave me Ativan and that helped...thats when the nurse told me EMEND next time.

Wishing everyone healing and low SE's! ((hugs))

KAT4856

Macintx,

How are things going. Still feeling okay. Have you started to lose any hair yet. I found that to be hard.

I wanted to mention to everyone that I can feel some stubble on the top of my head . I had heard that sometimes your hair may start to come back on Taxol. Anyone had that experience?

Macintx

Hi Kat4856, thanks for asking.  Yes, I still feel great.  Except for the day or so I felt a little weird and had no appetite, I wouldn't have known I had chemo.  I've noticed my scalp is starting to feel a little sensitive off and on, like getting that feeling when you have a pony tail and take it out. But not all the time.  So, I imagine it's just a matter of time.  I plan on buzzing it once it starts falling out.  My next AC is Tuesday.  So how is your Taxol compared to the AC?

lago

KAT4856 I do believe my hair started to grow back while I was on Taxotere. Taxol and Taxotere come from the same tree. One is the bark, the other the needles. They can have some of the same SE but not exactly.

Brwneyedgirl

I was wondering about the hair growth.  The top of my head is pretty bald, but all over it seems to be growing!  One week before chemo 3, and the halfway point.  YAY!!!!  I tried the scarves and decided to buy a selection of fun hats and were those instead.  Three more coming in the mail today.  Have a good weekend everyone.

KAT4856

Macintx,

Honestly I have felt nothing with the Taxol, the first infusion I had some aches in my body but I was told by the chemo nurse that that was the Neulasta combined with the Taxol. I took Advil at night and it helped. With the 2nd infusion I did not have to take the Neulasta shot so I didn't even have the aches. I've noticed my taste is alot better now and my appetite is good. Two more to go, will be done on 3/26/14 and than on to radiation. Do you have to do radiation?

Sicilian

I have my next treatment on Thursday and they always check my blood levels beforehand. I did have my blood tested 8 days ago and all the levels were very good.

lago, not only do I have a humidifier going, but I have a whole house humidifier going in my bedroom with the door closed every night LOL! My daughter said that walking into our room is like traveling to Florida.

Ula, I have a port as well, and glad I do. The only problem I had with it is a reaction to the tape from the dressing, so there was a raw, red rectangle around it. It literally looked like I had been branded. It still hasn't completely cleared up, but  it's much better.

Good find to share. I've been treating my surgery scars with Mederma, which is ridiculously expensive. I found a Dr. Sheffield's Scar Gel in my local ShopRite and it was marked 99 cents! I'm kicking myself for only buying one tube. I plan on going back to get more next time I go food shopping.

lago

I wasn't impressed with Mederma. I actually preferred the silicon strips. Bought mine at the local Walgreens. Really did a great job and softening and flattening out my scar. It was my port surgeon that told me about them.

Macintx

Kat4856, yes I will have to do radiation after.  But, I've only done 1 of the 8 total rounds so far, so I have a way to go!

Ula

Thank you ladies, I am freaking out because it is Local anesthesia only 😐.

Last updates, I had an upset stomach last night, guess it was because the rice I ate it was little bit oily, which caused nausea. Took a nausea pill that my doctor gave me in case I felt any. I was sweating through the night. I only felt better after 4 hours and had a nice sleep. I already had my breakfast and took my bills, Emend & dexasone. Hope this week will go smoothly for all of us ❤️.

Again, thanks for yor great support.

Atiteca

hey ladies, sorry I don't write much but know I'm a faithful follower and am so grateful for your posts and strength in this journey. I had my 2nd AC Thurs and I guess I'm blessed with Decadron insomnia so I've got a little more uninterrupted time now . My first AC was harder than I hoped in that the SEs lingered longer than I hoped. I planned to work Mon after Thurs treatment, got up got in shower got straight back in bed and couldn't move. Just so dizzy and shaky with vertigo. Tuesday, I tried eating before getting out of bed and was able to fight to get out and made it by 10 but really struggled and had to be sitting or would get the shakes and had trouble comcentrating so I left around 4, I did claim that a big Victory by the way! By Wed I was doing better, but had rough patches through Thurs. and still took a nap when I got home. Friday, I kept talking about how great I was feeling and then bam fever and an overnight trip to the ER. They ran every test they had and it came up viral but I still ended up in bed with a high fever, high heart rate, fatigue, and cough for 6 days. So much for my good "off" week. I was so worried about not getting my 2nd AC due to the fever, but since my WBC was high they went ahead and I'm so glad they did, because I only had one spike in fever after that and I felt soooo good yesterday morning. When I went in for the neulasta my heart rate went back down to 83 from 125 the day before so that was a big relief (I was worried it could be the AC). So I don't know if it's even possible but I think my chemo killed my cold lol! Here's to maybe 12 good hours or so before my next cycle begins! And I'm hoping for a better round 2!

A small note about scarves, I had trouble with slipping to and I had good luck cutting the top off of pantyhose and putting on first for it to stick to. I just used a cheap pair with a run already. Sorry so long, when I talk, I talk. Not a twitter fan lol!

KAT4856

Macintx,

I hear you. But after the first few treatments you will be surprised how quickly it goes by. The reason I asked is I have an appt with radiation doctor next week and don't know what to expect. I've heard that some people can have accelerated radiation which is only three weeks.

Has anyone heard of the accelerated radiation?

lago

Ula what's the problem with Local anesthesia only? I don't have problems with local. I don't get nausea from it. They say you'll be in twilight but that never happens to me. Once they administer it I'm out. I wake up in the recovery room. I had it for port in, port out and colonoscopy.  After my port out I was told to eat lightly... I said to my husband "Bull shit I'm starved. I haven't eaten since 7pm yesterday." We went to this Italian joint right down the street from the hospital and I had some spinach lasagna and I finished the entire thing! Remember I'm the one that gets bad nausea on general anesthesia... I hate that stuff.

I found that the scarves that didn't slip were the cotton ones. I had a few long rayon ones that I loved but they would slip a little. Forget the silky ones. Not worth the effort. I think the nylon over your head is a good idea or even a wig cap but for me I would get too hot. I actually slept without anything on my head and I did chemo October-January... so bald all winter. I never wear hats though. Has to be at least as low as 10ºF for me to put my hood on.

DiabloMom

Hi Ladies....

Here's an update on my  side effects.  The rash on my hands went away around day 1-12 [infusion#-day#] which is also the day my hair started falling out in little clumps.  The acne and dry skin worsened until today.  Today is 1-16... my skin looks much better however almost all of my hair fell out in the shower.  I'm so thankful I prepared myself mentally for this.  I went ahead and had my husband shave the rest of it off.  I felt physically good this week and am gearing up for my next treatment.

Thank you all for sharing.  This site is such a great comfort.

Macintx

Kat4856, my RO said that the standard is 31 treatments, but occasionally they only do 24 or so, but that is usually on much older patients (at least I think that's what she said.)  She said most of it is whole breast radiation with the last week being a boost to the source area of the tumor(s). 

christyGA

HAS ANYONE ON HERE BEEN TOLD THAT THEY NEED RADIATION EVEN AFTER A DMX AND CHEMO WITH A STAGE 1 TUMOR? SOMEHOW I FIT INTO SOME GRAY AREA AND HAVE "RECOMMENDED" RADIATION. MY HUSBAND AND I GO BACK AND FORTH ABOUT IT. ANY OPINIONS? THERE HAS BEEN A RECENT STUDY THAT SAYS THAT RADIATION CAN LEAD TO AN INCREASED RISK OF HEART DISEASE. I HAVE A SIGNIFICANT RISK FOR HEART DISEASE AND I AM NOT SURE IF I WANT TO TAKE THE EXTRA RISK. ANY OPINIONS? THE RADIATION ONCOLOGIST IS LEAVING IT UP TO ME...

lago

christyGA there are so many reasons why they do radiation and its not just about size or stage. Location plays a big part. Now in my case typically tumors over 5cm do get radiation. My rad onc told me I was in a grey area too but in my case she was giving me a pass. I think the reason why is because the tumor was right above my heart close to the chest wall... and the risk to both my heart and lung probably wasn't worth the reward. 

My recommendation is if you are still unsure discuss this study with your current rad onc (assuming you haven't yet) AND get a 2nd opinion. Also I don't know anything about this study. How big the sample was, if the study had any flaws etc. One study doesn't always make it true. 

I really hate how these MDs with all this experience and the medical degrees can't at least say "well it's your decision but my recommendation is _________" I felt I was getting this same treatment with my endocrinologist regarding which treatment I should do for osteoporosis. I'm changing doctors because of this. I don't want to be told what to do but I do feel I am paying for their expertise. They can still make a recommendation, right?

BTW I am 3.5 years NED. Also note I didn't get the Lat Flap as reconstruction. Don't know if that plays a part. I would also ask your onc if having this lat flap makes it harder to detect a lump, local recurrence or new.  (remember even though you got the BMX there is still breast tissue left. Your risk is only about 2% for a new cancer though but I would still want to know the answer to that question).

Ula

dear lago,

Thanks for comforting me, I think I will do it, but right now I can't afford it maybe next cycle.

Last update, I am feeling little bit tired, low energy; however I managed to make lunch

Hope the best for everyone. 

MicheTheVanquisher

I had chemo #2 on Wednesday, felt good on Thursday and then by Thursday night started feeling nauseous in spite of taking Reglan. Thought I was better yesterday and ate a little oatmeal and some veggie soup but ended up sick again and getting a script for Zofran last night and sipping on water. Am now taking both meds and having a hard time sitting up and even sipping juice. For some reason laying down is easier on my stomach. Any suggestions for getting at least liquids in. I don't want to check into the hospital. 

Also, my bum is itchy though looks normal according to DH. I've been using vagisil anti-itch wipes which help somewhat but do I need to get this checked out? Happened on first chemo too but this time seems worse. I've never had anything like this before. Not prone to skin problems. 

Ula, I'm glad I got a port and the local was fine, I dozed off and woke up with the port, My cancer care center seems to put them in as a matter of course--maybe because my SO has gone through chemo herself and is good at placing ports. Anyway, it sure makes things easier and I don't have to look at and wonder about a line going into my arm.  Good luck for your next round. 

4 Days after chemo #2 and I'm waiting for my eyebrows and other hair to fall out. I'm using cold caps so most of my hair head should stay put but I haven't lost much hair. Any chance I won't on Taxotere??? The suspense is killing me!

tangandchris

Hi Miche-sorry to hear that you are having trouble even with liquids. I really have no advice, naseau and vomitting have never been my forte! I had #2 Thursday and have been taking Fenegran and now Zofran, but still have breakthru naseau. I got up earlier to use the bathroom started to dry heave, but I realized that was due to not having anything in my tummy. Maybe if you ate a cracker or 2 that would help? ((hugs)) I'm really no help I'm sorry.

I gotta say that this time around is not as bad, but it still sucks. I'm not wanting to continue this for another 4 rounds!! I saw something yesterday about a person going thru 16 round of chemo and I thought how is that even possible??  Anyway, I'm just venting a little here. I'm thankful that this round so far as been easier than my first, that is for sure. I just want to wake up and this nightmare be over though.

 

((hugs))

princessrn

niche... My boss at work just had 16 rounds. She had 3-AC and then 12 Taxol. And then radiation. So I'm grateful for my 6 like you. However, I have the Herceptin that will continue for the next year.  

I have my second round Thursday and am hoping for a better time of things. 

lago

MicheTheVanquisher If the nausea meds are not working for you tell your onc. There are other meds but are a bit more costly. Your insurance won't pay for them unless you try the less expensive first. Also as tangandchris states it is best to have a little something in your stomach. 

Also from what I have read the folks that used cold caps and were on Taxotere have had very good luck. They did have some shedding/thinning but nothing others would notice. My hair started to fall out on Taxotere I think around day 16 which is pretty typical if you don't use cold caps. Sounds like they are working for you.

tangandchris people who do 16 rounds might be getting it every other week. The dose is much less than what you get every 3 weeks... granted it's no walk in the park. Adriamycin is tough stuff. I didn't do that. From what I've been told it's even tough than Taxotere... and that's no cakewalk either... but so many women do go through it. It's been around for a long time and a good chemo.

KAT4856

Macintx,

Thanks for the info.  I was thinking it probably would be around 6 weeks. I think the accelerated (3 weeks) is available if you do not have any node involvement. I have an appt Tuesday so I will know more after that.

dancetrancer

christyGA - I too was stage I with a BMX and radiation was advised despite having negative nodes.   The reason radiation was advised in my case was because I had multiple close margins, even after BMX (my cancer went very close to the skin and to the chest wall, too).  They were concerned some cancer cells might have been left, hence the radiation recommendation.

I got a second opinion at Emory.  They were fantastic.  I highly recommend going there since you live in GA (if that isn't where you are already).  They too recommended rads, but fortunately just on one side - their path showed different results leading to different recommendations (my original rad consult wanted me to do bilateral rads due to close margins bilaterally).  I went with the Emory opinion.  I had rads on the left side.  I had huge concerns for my heart, but decided the cancer risk was the greater risk.  I agonized over this decision, so I very much understand your position.  It did affect my reconstruction cosmesis.  But you do what you gotta do to live.  You have to weigh the relative risks - ask your RO about your risk of recurrence with and without rads.  Hugs to you! 

Njmom3

Hi guys!  Sounds like everyone has settled into some type of routine and we are all dealing with some type of side effects.  Well this was the week I said goodbye to my hair. This was by far tougher than saying goodbye to my boob   I did get it cut into a short pixie when the shedding began, but a week later I look like Beatlejuice!  I still have a few hairs left but they stick straight up, it's ridiculous to look at.  I did take my wig Gidget out for her first appearance at my daughters cheer banquet. It's the same style I had prior to having the pixie and I really didn't get too many looks.  Only one mom knows what I've been through so I was wondering if this was going to give it away...  It was not the most comfortable thing to wear bit maybe because my scalp is so sensitive it hurts and is itchy particularly right in the front.  I want to scratch it but it hurts ugh!  Anyone else have this issue?  I don't know of I should go get the rest shaved or just let it go?  I'm wearing all my buffs, caps and cool things I bought, around the house but not out.  I have a hat with hair attached that seems to be the go to for running to the dr etc.  

Well tx #3 is Tuesday and then I will only have one more AC left!  My mo took me off my blood pressure water pill he thinks I'm too dehydrated, and my blood pressure has been leveling out. Having a lot of morning dizzyness it's a huge effort to get dressed. I have to sit to put makeup on....  Not sure what's up with that, mo said I could just be exhausted. 

Hope everyone has a great week and remember every day is one day closer to finishing chemo!

lago

Njmom3 you need to get a wig liner. I only wore my wig twice but I could never wear it without one. This is what I bought: linky

Njmom3

Thanks Lago!  I was looking at those....  Right now my head is itchy/sore even with a little cotton chemo beanie on.  I hope this goes away!  If I decide to shave the little bit of remaining hair, myself, (meaning hubby lol) how did you guys do it!  Razor and shaving cream, electric razor...  Not sure how to go about it, or just go to salon?  Trying for the leas traumatic experience if possible.  

Macintx

Njmom3, how many days after your first treatment did you notice your hair beginning to falling out?  I'm on day 12 after my first AC, and so far I've only noticed that occasionally there is a little tingle in spots on my head.  But I was noticing that the stray hairs outside my bikini line were easily removed by just barely tugging on them with my fingers (wish it were that easy all the time, haha!)  The weird thing is that lately, I've had a lot less hair loss than normal.  Guess it's because of my new really short haircut, but seems like such a tease!

tangandchris

Mac-I noticed bikini line hair coming out first too. I think you will start noticing your hair come out anytime now. I was about 14-16 days out when mine started coming out. I still haven't shaved mine all the way yet though