TCHP Ladies Late 2014 / Early 2015

SugarCakes · February 2015

I feel a little selfish for starting this thread but I'd really love to hear from the ladies that recently started or will be starting the TCHP regimen. I got the idea as I kept browsing through various threads looking specifically for TCHP ladies. I had my first infusion on Feb 2nd and will have my second on Feb 23. I was great days 1-3. Tired but I wouldn't say fatigued on days 4-6. On the up days 7-8, and pretty much feeling normal now with the exception of dry and sometimes itchy hands. I swung from almost constipation to not the worst diarrhea. I had the neulasta shot on day 2 and crazy back pain on night 6. MO thought that was a little late to be an SE of the Neulasta. I was having lingering back pain pain prior to my DX, but no where near this severe as night 6. It has since gone away. Hair is cut really short and head sometimes feels tingly but hair has not started falling out as of day 11.

SugarCakes · February 2015

Well my hair started coming out with gentle pulls yesterday, day 14 of cycle 1, and it continued today. I thought I was ready with my extremely short cut, but man it looks bad. I know I will get over it soon, but I am not looking forward to my son and BF seeing me this way for the first time.

I have a headache which I assume is related. I should stop pulling. It's hard not to do at tha point, however.

MO said "Day 16. Not day 17, but 16". He said it jokingly but he was serious and right.

senka · February 2015

Hi there :-) I'm not on same regiment as you (I'm on AC-T), but I'll share few of my thought on hair loss, as you mentioned it, and I hope that is fine with you.

I was too very concerned with her loss, when it started falling out I cut it really short, but only few days later it started falling out a lot, and the roots were very painful (but it still looked as I have full head of hair). I hated the feeling of chunks falling out when I touch it, so I shaved it all off. The truth is I felt liberated. For me that was much easier than keep staring at it wondering how much longer until I lose it all.

I feel good about the way I look now. It is part of where I am with my life right now and I'm learning to find beauty in the way I look now (that goes too for the way my breasts look now - double mastectomy with reconstruction, huge scars, one nipple waiting for reconstruction... ) ....

All I really wanted to say was: my son used to love my hair (he's 11 yo now) and I was really worried how is he going to take it - I guess I thought once he sees me bald he will truly understand I'm sick. ... Guess what - he thinks I look great :-) the other day he told me he thinks I should keep it this way for good :-)

Take care ;-)

PS you look gorgeous I'm sure hair loss will not change that :-)

Mardea15 · February 2015

SugarCakes, depending on how the days are counted, this is day 15 or 16 for me & my hair is falling out in chunks with gentle pulls. Maybe by tomorrow night there won't be that much left when I go to my appt to have it shaved off. I too woke up with a headache this morning, so I'm thinking my hair loss & headache are related. My scalp also feels tingly & kind of sore. Since the fallout is much more accelerated, I'm more ready now to have it all off.

I found some head covers by Buff Headwear (found in sports stores like REI) that I really like. I had a couple already because I used them under a motorcycle helmet when I rode with my husband. They can be worn many different ways & are very comfortable & soft without any scratchy tags. I went to REI yesterday & got 2 more so I would be prepared with more head covers before I lose it all.

DaisyQ · February 2015

Hi Ladies,

I think it is great to have a TCHP specific thread! I finished my TCHP treatment on 12/23 and getting my 3rd round of Herceptin-only treatment next week.

I shaved my hair shortly before round 2. It was falling out in clumps, and was driving me crazy. I also had the weird scalp discomfort too. I decided not to wear a wig. I used big scarves worn over skull caps. I secured them using a hair elastic--just like a low, long pony tail. It felt more like hair and covered the back of my neck. Check out this link to see how it works..https://www.youtube.com/watch?v=IaPNix3z-Aw

My MO was great about treating my side effects. Her goal was to help me get through treatment as comfortably as possible. Fatigue, nausea, diarrhea, taste changes, and body aches were my main side effects. They became more severe and lasted longer as I got to treatments 4-6. But I was still able to function and take care of my family.

TCHP is great for us Her2+ ladies. I am so thankful Herceptin and Perjeta are available for us. I had a complete response to treatment. So exciting! Still facing radiation and reconstruction, but I'm checking things off the list. And you will too!

SugarCakes · February 2015

yea! So glad to see some responses on the board.

Thanks Senka. The morning after my post about my hair, I sent my BF a pic. He said I was still beautiful. Later that day since my son's daycare was closed and he was spending the day with me, I started talking again about being sick. Much to my surprise he remembered what I had told him before and he commented that my hair would fall out before I reminded him. He seemed so cool with it that I went ahead and told him it had started falling out and asked if he wanted to see it. He did. I warned him that it looked bad but did not hurt and would eventually grow back. He looked at me and said "but you and your hair is pretty". Then he gave me a hug. He's 4! Where does he get this?!? I melted. I'm good now! We then read the Chemo Cat book together.

SugarCakes · February 2015

When I first learned of the HER2+ I was quite upset over it. I just saw "aggressive" which I felt explained the 4.5 cm lump seemingly out of no where. Then I just knew it had already spread. Now, I see others with their different diagnosis and treatments along with side effects and I feel "lucky". We all have to do what we have to do and we all are determined to get past this and have it just be a chapter or two in our lives. Still, I have come to feel thankful with my set of circumstances. Any other TCHPs feel that way?

Mardea15 · February 2015

SugarCakes, I, too, was very upset when I learned about being Her 2+++ & then learned how aggressive this type of cancer is. However, when I learned about the advances that have been made with targeted therapies, it made me grateful, not that I had to join this club, but that this happened now & not 10-20 years ago when these treatments weren't available.

BTW, I get headaches pretty much every morning now when I wake up - maybe from Herceptin. Is this a SE for you, too?

SugarCakes · February 2015

Mardea15, I seem to get random headaches at any point throughout the day. I had one yesterday midday. I rarely got headaches so I assume it is a side effect. I'm thinking the hair loss may have brought on the headaches also.

Hey, have you seen the movie Living Proof? It's about the doctor's development of Herceptin and the fight to get it approved. I watched it the night I received my biopsy results. It is a really good movie and it brought comfort and inspiration. At the same time, it angered me to see howmuch BS goes on when folks are trying to get new treatments approved and the women (especially) that are suffering and dying in the meanwhile. I downloaded the movie from Amazon.com for $10 or $12.

SugarCakes · February 2015

this past week I have felt so close to normal that I have slacked off from some of the things I was adamant about at the start of my first cycle; things like drinking lots of water, brushing after every meal, rinsing my mouth throughout the day, not eating sweets. Sigh! I need to do better about sticking to these things. I felt a little icky yesterday and realized last night I did not drink just water all day! It was tea, orange juice, and lemonade. I will try to get back in the routine of everything today as I have my second infusion tomorrow. I have heen counting down for just over a week now, ready to get it done.

SugarCakes · February 2015

I want to know if any TCHP ladies further into their treatment lost their eyebrows and/or eyelashes.

SugarCakes · February 2015

I also want to know if non-port ladies had a reaction to Taxotere that resulted in a black bruise along their veins around the IV site. I want to know if this bruising eventually goes away. MO said it was common and no cause for concern. That was when I sent him a pic and it was just reddish. I will see the MO tomorrow before my 2nd infusion

CassieCat · February 2015

I replied to your brow and lash post too, but thought I'd chime in here. You can see my details below, but I finished TCHP on 12/15/14. I've had two Herceptin-only infusions so far and go in for #3 in a couple of weeks. I've had migraines nearly my whole life and got really bad ones almost like clockwork during my first four infusions. Somehow, though, I managed to escape that pain during #5 and #6. I think the Zofran might have been contributing to them, as well as my own stress and anxiety.

I never had a port, and they used the same vein for 4 infusions. After that, it got irritated. You can still see some darkening around that area on my forearm, but I have hope that it will eventually heal completely. I have good veins, all in all, so they just used other ones for my last two infusions and now for my Herceptin.

I never wore a wig, just hats or scarves. My hair's barely long enough and thick enough now to basically cover my skull, and I go "as is" unless my head gets too cold. I started going without a hat about 3 weeks ago. I was returning to work (HS teacher) and just wanted to be myself and have everyone get used to the new look. I am sick of hats.

SugarCakes · February 2015

Thanks for sharing CassieCat. I emailed another member about her bruising and she said it took months to fade after her treatment was over. Given the number the chemo is doing on all cells, it makes since. I will definitely ask the MO about it tomorrow.

I have a wig I have yet to wear but I have bought like 16 scarves/hats/beanies since being diagnosed! I really need to stay off the web looking at head gear. Lol! The wig will be saved for work should I start traveling again or go into the office. I currently work from home when not traveling. Then, I may wear it on ocassion with the boyfriend. I'm kinda amazed how comfortable I have become with my baldness. My son is totally okay with it, but Ithink it freaked my little niece out a bit.

CassieCat · February 2015

That's what it looks like now, about 16 weeks after last using it.

geezermama56 · February 2015

I can see that you have many, many questions but hope I can help with some of them. I just finished my last round of THCP on February 11. I've never been happier in my life! I did really well the first 4 rounds but these last two have been more difficult to bounce back from. The tumors disappeared after the first round, which was very encouraging, but side effects gradually increased.

After round 4, my fingernails started feeling numb...like I had smashed them in door, now they look horrible, blood underneath, sore but the nails are still there. It didn't affect my toenails or my thumbs, though. They appear to be slowly growing out healthy but I look at my hands and get a reminder that I'm putting powerful drugs in my body.

I've also experienced edema, apparently its also a side effect of the Taxotere. Its been tolerable in the weeks past, usually no problem by week 2, but this time I'm really feeling it. Ugh. Along with the metallic taste in my mouth that I seemed to have developed these last few months, I have to keep telling me that this too shall pass...

I've been fairly active throughout...I teach yoga for a living, as well as some other fitness formats, so I was active before the diagnosis. The first week after chemo has been my most exhausting and I try to take naps when I can. I have a lumpectomy scheduled for March 5 with radiation to follow. I will be on Herceptin for a year afterwards. I will keep my mediport until I no longer require the infusions. It does not interfere with exercising but its in the way of my sports bra. Its on my chest right under a bra strap.

My hair has also started to grow back a little...my hairdresser told me I would get some "pre-Hair" before my real hair came back. She was right. I'll have to let you know what happens with it. My eyebrows and eyelashes thinned out quite a bit, but looks to me like some "new growth" is starting in my eyebrows. I have a wig and its really cute, but I have not worn it one time! That really surprised me. Since its been winter, I've been wearing fleece beanies and some knitted ones. I'm going for the "hipster" look. When I work out, I simply wear a bandana. I don't know what I'm going to do when it finally gets warm again.

Hang in there,

Mardea15 · February 2015

SugarCakes, I'll be thinking about you as you have your 2nd infusion tomorrow. I hope all goes well for you with minimal SEs. I will have mine on Tues, the day after yours. Just think, we will be done with the first two chemo treatments with only 4 more to go!. Can't wait to get all the way to the end of this phase of treatment.

SugarCakes · February 2015

CassieCat, did your bruise start out wider? Yours doesn't look too bad in the pic. Here is mine. It looks horrible. I just hope it's not this bad come summer as I won't wear long sleeves.

SugarCakes · February 2015

thanks for sharing Geezermama5. That's the TCHP specific experience I was seeking out. I know I will continue Herceptin after my surgery and radiation as well. It was referred to as "easier chemo" however. I wonder if that means herceptin plus another actual chemo drug. Perhaps it depends on my response to the neoadjuvant therapy.

Could you simply feel that your tumors was gone after the first round or did the doctors actually check with an ultrasound? My tumor which was 4.5cm feels like it has shrunk some.

CassieCat · February 2015

my tumors were noticeably smaller after the first two cycles and undetectable on ultrasound halfway through. It was pretty great to know chemo was working. I'm currently NED and grateful.

My vein never looked quite that bad. I'll see if I have a picture when it was at its worst.

I had some edema as well in my left ankle, but not until the last cycle or so. My nails were fine until cycle 5, but now two are lifting. I'll be glad when my nails are all healthy again.

DaisyQ · February 2015

Hi SugarCakes,

Good luck today on treatment #2! A good friend sent me a text of a pie chart after every treatment with my progress filled in. After today you're 1/3 of the way done with chemo. Way to go! I have my 3rd round of Herceptin-only treatment tomorrow. It is much, much easier.

After my first treatment, we (my MO and I) could tell by palpitation that the tumor was softer and smaller. Things kept progressing that way until round 5. At that point it was hard to tell if what we were feeling was scar tissue or the tumor. We now know it was scar tissue. I did not having any imaging done during chemo. It was good to be able know by feeling the mass getting smaller that chemo was working.

I am sorry about your bruise. It looks painful. I had a port installed so received treatment that way. I found my body healed very, very slowly during treatment. I had a reaction to a bracelet that contained nickel. It took two months for the scab to heal and the scar remained very noticeable for another month PFC. A reminder to be very gentle with your body.

Good for you for being comfortable with your baldness. I am too. I get so many positive, supportive reactions from people everywhere. I had people at the store use hand sanitizer before checking me out or sharing that they had been sick and directing me to another line so I would stay healthy. My teenage kids and their friends have been really accepting too-they think it's completely badass. During treatment one man announced to a bunch of us bald ladies that he never imagined that women could be so beautiful without hair. People can be amazing.

Oh, the eyelashes and eyebrows.. The eyebrows and eyelashes were mostly gone after treatment #3. My eyelids swelled after each treatment. Makeup just made things more obvious. I gave up, used foundation and blush, and accepted the reptilian, alien-like eyes.

To all of us ladies here, wherever we are in our treatment, we'll make it through. Our wounds will heal, our taste will return, our hair will grow back, and this too shall pass..

Sometimes the beat is so loud in my heart
That I can barely tell our voices apart
Sometimes the fear is so loud in my head
That I can barely hear what God says

But then I hear a whisper that this too shall pass
I hear the Angels whisper that this too shall pass
My ancestors whisper that this day will one day be the past
So I walk in faith that this too shall pass

-India Arie

SugarCakes · February 2015

Thanks Mardea, DaisyQ, and everyone for the thoughts and well wishes today. My second infusion itself went well. There was miscommunication amongst the MO and nurses which resulted in a later than intended start and I was the very last one there AGAIN. I was there from 12:45 to 6:00. The infusion itself was 3.5 hours vs the 5 hours the first time. The toe tingling and screwy taste buds have kicked in sooner this time around, but other than that, I'm feeling pretty good. I thought my tumor had shrunk but wasn't sure. It's still big to me but MO going by feel also, thinks it has shrunk by one third. Oh, I don't think I mentioned that I got the the results back from my myriad genetic testing last Thursday. They found nothing clinically significant. That is good news also.

I will keep you ladies posted on my side effects this 2nd round. I will be thinking of you tomorrow as you get your second infusion, Mardea. Enjoy the snacks! When I am there, I throw the "do not eats" right out the window...and into my mouth! I had knotts berry farm cookies and a few peanut M&M's and hard candy! I also slept a little,thanks to the benedryl )

Hugs Everyone! I am happy to have received the 2nd infusion today! Ask me if I still feel the same come Thursday. Ha!

SugarCakes · February 2015

DaisyQ, I love love love India Arie

DaisyQ · February 2015

Good luck with your treatment today, Mardea. I'm in the chair getting my Herceptin. It's a happy, rowdy bunch in the POD this morning. Lots of smiles and laughter..

loriekg · February 2015

Hi SugarCakes…I've seen you on the some of the other boards (Jan chemo) but so glad you started this thread as so many of the questions I have are probably more suited to our particular mix and the neoadjuvant aspect of our treatment.

I'm about 1 ½ weeks ahead of you in chemo…and like you, great on the first couple of days. Seems like it's the neulasta shot that hits me hardest. After a solid week, I pretty much feel back to normal. The worst side effect (as in most debilitating) has been the horrible headache that I've gotten around day 3-4. Mardea—sometimes I'll have a very slight headache with I first wake up, but by the time I am up and dressed, it's gone.

I have lost almost all my hair by my second treatment (just super thin and whispy). I WISH I could be comfortable in my "baldness" but haven't gotten to that point yet. (Okay, that's an understatement. I don't even want to look at MYSELF without a wig on, much less let anyone else see me.) Still have my eyebrows and lashes.

Oh I'm glad you mentioned Living Proof and where to find it! I hadn't thought about downloading from Amazon.

I also felt as though my tumor had shrunk after my first treatment. And when I saw MO right before round 2, she just measured by palpitation (no scans) and confirmed it had shrunk by about half.

I noticed with round 2, it seemed my taste buds were "off" much quicker. I picked up a burger and fries on my way home and the fries and ketchup tasted very weird.

NOW I have developed a bad case of eczema. Looks like acne right on my cheeks. Still have bloody nose issues every morning.

Hope you are doing well with the SE's today…and you too DaisyQ! --Lorie

Mardea15 · February 2015

Thanks for everyone's good thoughts & well wishes for my 2nd chemo yesterday. I didn't have any problems during the infusion but had heartburn again last night with a lot of L-sided chest pain, even with taking Omeprazole daily. In addition, I also took Tums & used heat to my back. It finally went away & I was able sleep.

I was fine this morning but suddenly became very tired while driving home after Neulasta shot. I have a difficult time drinking enough fluids so I am scheduled for additional IV fluids at the clinic for 3 days (Thurs, Fri, Sat). My MO said that drinking lots of fluids (even if amount is 1/2 your body wt) doesn't always help when on chemo because fluids are needed faster (IV), especially with diarrhea - major SE I had the 1st time. She is being proactive in giving me IV fluids & is setting up my future chemo treatments in the same manner.

Good news is that the tumor has shrunk to less than 1/2 in size of what it's was before 1st chemo. My MO was happy with those results.

SugarCakes, hope you are continuing to doing well since your chemo last Monday.

Daisy Q- hope you are doing well after your herceptin.

Loriekg, I'm having a difficult time with being "bald" also. Haven't quite got there yet & wonder who that person is looking back at me in the mirror. Only time I haven't had a hat, scarf or wig on is at night if I get too hot. Does work to cool me off!. Hope your eczema clears quickly. I haven't had any skin issues yet & use Egyptian Magic as a great moisturizer every day. It has only 5 ingredients- olive oil, & 4 natural honey products (all completely natural). I get it from Costco. I even use it on my lips, around my eyes & on my throat & neck. It cleared the dryness & irritation from my runny nose after 1 st chemo. So far my nails are still ok.

Best wishes to all for the rest of this week & that all goes well.

SugarCakes · February 2015

that reminds me Mardea, I also had some left side chest pain during chemo and yesterday. At first I thought "heart" but then I rememebered that's where the tumor is. I hope it's those cancer cells being attacked! I remembered havng it momentarily shortly after the first chemo also.

I'm more than 36 hours since my last bm. Getting nervous. Didn't exactly get the big C the last time. Have already taken more colace this time and nothing's coming. SE though manageable, definitely seem to be coming faster. Winding down as I type and feeing generaly icky.

Hope the heartburn and headaches stay away for you ladies. Hang in there!

agness · February 2015

Did you find the results thread I posted in the HER2 forum?

Sending lots of love. The drugs were hard but I got through and I think that after 4-5 doses it would have been enough. My MO thought that the tumor was gone in May after dose 3 or so. My imaging, the day after dose 6 so it wouldn't have yet affected anything, showed no cancer and 6 weeks later surgery surgery confirmed it.

Take extra potassium (raisins are an easy source) in between rounds, taxotere pushes it out of your body. Carboplatin pushes out magnesium. Take probiotics to help your gut help you assimilate nutrition from round to round.

I worked with a naturopathic oncologist who helped figure out what else my body needed and what supplements to take, and what days to take a break. I highly recommend adding to your team as traditional allopathic oncology only goes after cancer cells but they aren't focused on healing your body.

I stopped my Herceptin at 16 doses (instead of 18) as I was starting to ache day and night andmy body was screeching that it had enough. I've just finished the fourth week, you know the one that comes after week three (I would have had dose 17 last week(. The pain has abated and my muscle strength is returning.

Feel free to PM me if you have any questions.

Much love and power to you.

Ann

Mardea15 · February 2015

Hi SugarCakes, Hugs to you & I'm sorry you are not feeling well tonight. I have been taking Senna-S for constipation & it has worked for me. Besides Senna-S being a natural laxative it contains ducosate the same stool softener as in Colace. Since Colace is only a stool softener it doesn't work as well as the combo. This time I started the Senna-S (2) same night as chemo & will continue every night as long as needed. It already worked today but I could tell I still needed to take it again tonight. I know there is a fine line between the big "C" & the big "D" & it's easy to go from one to the other especially since the big "D" is a common SE of the THCP regimen. In fact, my MO said that's pretty much to be expected & is one of the reasons she's arranged for 3 days of extra fluids after each chemo. I asked her about taking probiotics during chemo & she said they are too strong & can increase the diarrhea. She said better to stick with yogurt as it's more natural. Just thought I'd let you know her opinion.

I hope you feel better better soon. Let us know how it goes.

Paddymom · February 2015

XAnybody have a MO Who doesn't follow chemo with neulasta injection? Just got out of chair. Been there since 8:00 am. Part of protocol was that my neulasta would be given tomorrow but told by nurse that I wouldn't cause insurance did not approve it. So while in chair I spoke to insurance rep who made calls and yes it would be approved with pre approval from doctor. To shorten this long story, a 3 way conversation was had wherein understanding was Iwill be approved. As soon as I hung up phone with rep I got a call from the front desk saying it would be approved for a third party paying. ME! NOT what insurance said. This is the most frustrating thing so far! Thoughts?

Ps. Today first chemo

CassieCat · February 2015

Paddymom, I always had a Neulasta shot the day after chemo. I hope your insurance will cover it. It's expensive, but I know it helped me with my white counts.

TCHP Ladies Late 2014 / Early 2015

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