TCHP Ladies Late 2014 / Early 2015

Paddymom

The neulasta was included in original treatment plan. Was told maybe I will be lucky and not have significant loss of wbc. No alternatives given. Have I chosen the wrong treatment center, ladies

Paddymom

The neulasta was part of my planned program but has been dropped in the eleventh hour. One of the nurses told me maybe I would be lucky enough to not have low wbc and not really need it. Huh? beginning to wonder about my treatment center now? Am I overreacting?

loriekg

Paddymom...nothing like having something else to stress over on your first day of chemo, right!? If it were me I would be on the phone first thing in the morning to the treatment center and see if someone in authority can approve you having the shot with the pre-approval from your insurance company. Maybe they can get it together in time for you to get in there tomorrow. It is costly! My insurance was billed $11,351 for this (--but wrote off $8,295 so actual payment was $3,055).

I don't know that everyone automatically gets it...it seems like I've read some of the ladies get it only if their counts go really low. Maybe your MO is like that so it was unusual for them to automatically schedule you in for the shot?

larod825

I take nugpogen for 10 days post chemo with shots in my belly that my husband gives me I only have 20 shots left...:). Sorry meant to say my insurance didn't cover neulasta but they covered nupogen since the cost is cheaper but you have to take 5 - 10 shots depending on what MO says.

Mardea15

I always have the neulasta shot as well. Last one was 2 days ago. Had pretty significant bone pain this afternoon & kept feeling like my knees were going to give out when walking around. Also had pain in shoulders & neck last night, from neulasta, i think. Finally took a pain pill (oxycodone) & that made a big difference. I was actually able to do some vacuuming! Yeah for the moments when feeling good!

raleighgirl

Hi ladies!

I have been lurking for a while. Finally ready to join in on the conversation. I was diagnosed December 23 with Her2 positive breast cancer. I had a large 4cm tumor surrounded by more than 6 less than 1cm satellite tumors. I started chemo January 15. My third infusion will be tomorrow. I've been feeling great the last two weeks after a very rough second infusion(I got the stomach virus which reared its ugly head as soon as I sat down in the chemo chair). This definitely set me back with the recovery time. Anyway, I'm nervous again about chemo tomorrow but I am happy to find you ladies who are also going through TCHP. I am 37 with two children under 2.

Sugar cakes, I also live in Raleigh!

loriekg

Hi Raleighgirl! I've got my #3 on Friday--we're half way done!

Most all of my side effects are gone by the second week too...except for just some very manageable ones. Like watery eyes, bloody nose in the mornings...

I had two under two also...that are now teenagers! Good luck tomorrow!! --Lorie

SugarCakes

Hey Raleighgirl!!! So excited to see someone else from the same town. My tumor is also 4cm with 3 smaller lesions they believe to be cancerous and 2 others they are not sure of.

Who's treating you? I'm with the Duke Cancer Center at Duke Raleigh Hospital. I started my treatment on Feb 2 and will have my 3rd infusion on Mar 15th. Two under 2, bless your heart! I have a four year old and with the initial diagnosis it was thoughts of not being here for him that upset me most. I'm much better and very positive now. I hope tomorrow goes well for you!

CassieCat

Welcome, Raleighgirl. I hope everything goes very smoothly for you.

MaryJC

hi ladies! Her2+ here. I'm not on projecta but CHT. I forget what the Herceptin targets. Is it the er+ or her2+? So I had nasty bruises on both my thighs. I thought maybe my son's lil elbows but realized was my own elbows leaning into my thighs smh. Then wound up recentky with this really cool fish on my forearm that I'm almost sure was from my lil man as it's been re-bruised just as it was fading. I think the meds make some of us more suseceptible to bruising.

My hair is shedding now. I was always into weaves n switched to wigs a month ago. No one noticed a difference. Just that NOW IM LOVING wigs hahaha. I'm loving expressing my mood. I get whatever color style I want. Picking up a blondish/brown one and wine colored one tmw. The hair loss part is HARD!!! But with nutrition, told myself its all part of my renewal. Had my surgery on my birthday. I'm a psychotherapist and decided I was getting a new life thru this experience. So new and fun appreciation of myself in advance of a new head of hair. Wouldn't have that were it not for chemo.

CassieCat

Yikes, that looks painful! The Herceptin targets the HER2+ status. People who are ER+ tend to go on Tamoxifen or AIs for that part of the diagnosis.

MaryJC

ah yes, ok makes sense! Thanks for clarity yes a little painful but they seem to be surface and fade much faster than a regular bruise. Once starts fading doesn't hurt which is how I rebruised the fishes head.

SugarCakes

Hi MaryJC, I have found that I bruise more easily, but for me the bruising seems to last longer.  I have a forearm "bruise" also.  I will post a pic shortly from my phone.  Turns out it is a reaction from the Taxotere.  It was just above the IV site.  Happened after my first cycle.  Second cycle was in the other arm.  No reaction or bruising this time.  My bruise turned completely black and is just now turning back to being reddish.  I have matching bruises on both inner/under arms.  I'm not sure what caused them, but given they  match even in location on both arms, I'm thinking from some fitted tshirt I wore! 

SugarCakes

MaryJC

lol re the fitted shirt... Yes I think it's we're bruising easier. Plus we both have lol ones, hardly notice how often we ordinarily are banged up until now. Yes this taxotere seems like its harsh.

I found a trick to keep wigs on bald head but the shape of my head is not allowing it to work as good. Heres the link I found. I'm having hard time with the pantyhose legs not slipping up my flat back of the head. It's not a round head. Any suggestions?

https://m.youtube.com/watch?v=9ahXYMPBgdc

MaryJC

hmmm- NOW that my hair is coming out I've come across this statistic of 3-6% chance of permanent hair loss with taxotere. I've read so many say their hair came back but at varied rates and a few on here that it did not. I wonder what makes the difference. I know I'm worried and pissy that yet another thing onc did not tell me.

CassieCat

MaryJC, I felt that way too. But luckily, my hair is completely coming back in.

SugarCakes

MaryJC, I had worn wigs on ocassion before, so the hair loss thing did not upset me too much either. I bought a very nice lace front wig after my DX. I have worn it once! I am preferring scarves, beanies, and turbans. Sorry, I have no tips on securing the wigs to a bald heard

SugarCakes

ladies, it occurred to me that a couple days after my 1st infusion, my urine was red. That did not happen the with the second infusion. What caused the red urine in the first place and any ideas of why not the second time

MaryJC

Cassie Cat- thanks for sharing. How long after your last treatment did it take to start coming back in? I know it varies for everyone.

Sugar Cakes- how'd you like the lace? I use full wigs. Just snatch off and on. My head doesn't tolerate scarves well without aching. Plus my head shaped so strange. Goodness. But I did the trick in the youtube video above. Seems to work. Just more work... sigh.

I'm trying to get the mods to do a survey on taxotere and permanent hair loss. This way we can see just how rare this is.

DaisyQ

SugarCakes: Interesting. I never had red urine, but I did have a few bladder infections during treatment. I also had a few mysterious SE's after round 1 that did not reappear for the rest of treatment. I am glad you didn't have it again after round 2!

MaryJC: I had those same fears about my hair too! I am happy to tell you that it's coming back. Right now it is really soft baby hair. My daughter says my head feels like a brand new stuffed animal.

loriekg: Good luck Friday!

Be well, ladies!

loriekg

MaryJC—enjoyed the panty hose video! Isn't it amazing how many wig videos/tutorials there! I haven't had any problems keeping mine on…but it is pretty alarming to me when I take it off and realize how it really is just sitting there. Here's a video…about half way thru there are some tips on how to keep your wig from slipping with tape and some other adhesive.

https://www.youtube.com/watch?v=-jc0F_O_ZSg

SugarCakes--I hadn't heard anything about red urine either.

Thanks Daisy! It's a weird feeling...*knowing you're fixing to feel bad for about a week!! Just noticed that you've finished your chemo phase! How are you doing with your tissue expanders? I've just started researching reconstruction options –feeling overwhelmed!!

--Lorie

DaisyQ

loriekg: I haven't had any problems with the tissue expanders. I started out 36DD and had skin sparing BMX. I am going smaller (C cup) so I haven't had any issues typically associated with the tissue-expanding part of TE's. The only issues I have are with short term aesthetics: they aren't even and are oddly shaped. I won't have my exchange surgery until September so I'll have to find spring and summer clothing to hide all this goofiness. I really like my PS and trust that I'll look great when this is over.

Do you have any recommendations for a PS yet? My BS recommended mine, they have worked together quite a bit. I felt that familiarity made the surgery go smoother and faster.

Good luck tomorrow!

loriekg

Daisy—I haven't met with plastic surgeons yet, but do have a referral from BS. I've really just started looking at the breast reconstruction boards last week. I want to know what the options are and have in my mind what I would like before PS appointment. If I'm not getting ahead of myself, I'm thinking implants instead of the flap surgeries. But I don't know if I will need radiation yet, so if I do, I guess direct to implant would be out, right? Some ladies posted pics of themselves with the tissue expanders…and I am so grateful that I am not going blindly into this, but have an idea what to expect. When you were going through chemo did you feel like that was the easy part…knowing what lies ahead?

CassieCat

I never had red urine. Possible UTI?

At 3 weeks PFC, I could see some hair trying to come back. It took another week or two for it to be more obvious. I'm about 11 weeks PFC now and have a lot of hair. None of it is very long yet, but I have good, thick coverage. The color's about the same, but it might be too early still to tell if it'll be curly or not (it wasn't before).

DaisyQ

Loriekg: Have you met with a radiation oncologist yet? I think I did about 1/2 through chemo. He explained to me that in a neoadjuvant setting the radiation go/no go is decided based on the tumor at initial diagnosis. In my case, radiation was always part of the treatment plan. I had a complete response to chemo, but since the pathology from SNB found .5 mm amount of cancer cells in the sentinel node we are still moving forward with radiation. Knowing the plan for radiation can help inform the reconstruction plan.

And, yes, looking into the future, planning and understanding the next steps definitely helped during chemo. It gave me things I could control and make decisions about--which I desperately needed! The research I did helped me be prepared. Just be careful where you do your research and check the dates (old HER2+ internet content can be scary). After much trial and error, I stuck to medical research and this site. Now I pretty much use this website.

I'll be thinking about you today. I felt like chemo days were like walking into a punch. I am taking my 12 year old DD to an out of town gymnastics meet this weekend so I'll be on the road. At least the weather looks clear in Missouri.

Amy

SugarCakes

No UTI. No pain or discomfort. I didn't think too much of it because a coworker mentioned that a friend of hers that went through chemo (I have no idea what chemos) had red urine. So when it came, I thought it was a normal side effect. It last 1.5 days maybe. Someone else just posted on a board asking if anyone else had blood in their urine.

What do some people refer to as "the red devil"?

CassieCat

Red devil = Adriamycin (the A in AC that some people refer to). It's red in color.

SugarCakes

thanks CassieCat. 

april25

Hey, everyone!

Wigs-- I've got the flattest back of a head ever, so it's a bit of a pain wearing wigs... But I have one, and I do use it! At first I had one of those velvet head-band things to wear under it... Then I bought one of those nylon-like wig caps to also wear. There are clips in my wig, so I attach those to the head-band which is on top of the nylon-like cap. It keeps the wig on pretty well, although everything still keeps slipping up in the back! It's a long-ish wig, so it doesn't really show when that happens... I just put up with it and keep pulling the back down now and then!

Most of the time I'm wearing caps and scarves, though... just easier and more comfortable. But it's nice to have the wig, too. It definitely makes me look a lot younger, since there are no greys and it's longer and thicker than my greying, thinning hair that is no longer there!

---

I'm currently in my 4th of 6th cycle (three weeks apart). I lost my hair a bit over 2 weeks after the first chemo. It started to fall out gradually but mostly stayed in until I finally took a shower and it all fell out at once... Kind of creepy, but at least it made things easy... Instantly needed the scarves and hats and wig! And I continued to shed after that, but not so much since most of the hair was gone.

--

Side effects... mine was diarrhea leading to dehydration. One week after my first chemo I had to go to the ER and was admitted into the hospital for 5 days to get constant IV drips (with some added potassium and magnesium at times). Same thing happened on my 2nd cycle--exactly! My MO had already reduced my taxotere, and it made no difference. (It's possible it's the Perjeta causing it, too.) 3rd cycle-- MO arranged home IV Drip for 2 weeks. I'm currently doing that now, in my 4th cycle. It's a real bother being permanently attached to a big IV bag and pump, but at least it's not painful.

I've only had mild other SEs... My nails don't hurt, but my fingertips are slightly numb... and there are white bands in the nails. I threw up once during cycle 1 and once during cycle 2, but haven't since then. I had bad burning pains in my stomach the first cycle, but Pepcid and Zantac helped. If I start to feel nauseous at all, I take Zofran or Compazine.

I had 5 self-administered shots of Neupogen the first cycle, but switched healthcare plans and MOs for the 2nd cycle (going from HMO to PPO), and have had one Neulasta shot on the 2nd day after chemo for the cycles after that. I haven't had any bone aches from either. Although the first Neulasta shot made me really tired for a day.

My doctor has me taking L-Glutamine to prevent mouth sores... but really, I didn't have any the first cycle without it... although my mouth did get tender! Now, sometimes me tongue feels slightly tender, but nothing bad.

I seriously could NOT eat most food my first cycle! Anything dry or scratchy was just out! And most straight protein tasted like cardboard. I stuck to protein shakes and sherbet and ice cream and creamy soups. 2nd cycle... strong seasonings made me feel ill and still hated most foods. But it has gotten better! For a few days my appetite will be a little iffy, but I will find something to nibble on, but most of the time I can sort of eat normally, even though I don't always feel like it. And at the end of the cycle I can eat anything and have a ravenous appetite!

So-- I've been yo-yo-ing a bit on my weight... going up and down around 10lbs each cycle. I gain it all back and feel better at the end, so that's good, anyway.

Bruises... I haven't had the really nasty big ones so far, but the first hospital I was at insisted on shooting everyone up with Heparin, and although that was in DECEMBER, I still have faint bruises on my stomach from those! --The second hospital didn't have that policy, so I was spared! (You can see why I switched healthcare providers...! The other guys were always cheaping out and doing weird unnecessary stuff... )

I know this can be cumulative... but so far, aside from the stupid D's and the IV drip, I'm actually feeling better than the first two cycles. I'm a lot weaker, though, because stuck to the IV, I can't really exercise... and there's the tenderness in my feet (neuropathy, I'm sure), that comes and goes...

Hopefully nothing worse will come along and I can get through this... I'm getting used to it by now, actually! Weird how much the body can take!

--So that's been my TCHP experience so far!