TCH+P starting next week. Any advice? Experiences?

MommyErin

HER2+ Stage 4 BC with metastasis to the liver. Low tumor load though, so that's a plus. I start TCH+P next Wednesday: one treatment every 3 weeks. I would appreciate reading others' experiences with this combination. Any advice as I prep for this? Supplements I should ask my oncologist about (glutamine, B 6, beta glucan?)? Did you get a corticosteroid pill before your first treatment? My oncologist didn't say anything about it, but I came across it online and am planning to ask him. Anything I'm missing Thanks!

erinmyhead

MommyErin--So sorry you've joined this club, my friend. But you won't find a better place for practical advice, tips, tricks and encouragement. Devour the ideas here (sign up for articles specific to your DX/TX, check community lists for chemo/ER bags, TCHP and triple positive groups, shopping lists etc,).

I just had my 3rd TCHP a week ago, and things have gone surprisingly well. I could not feel my 3x3cm nugget a couple days after my 1st TX, which let me know it was working (and side effects worth it).

My Onc said not to start anything "new," (I.e. diet, vitamins-"throws off blood tests"), but I've found if I listen to my body and try natural remedies (1T Mott's vinegar every day, coconut oil for skin/mouth/tummy, whole foods, Activia, no caffeine, sugar, salt, soy, lots&lots of water -90 oz. day), the SE are tolerable.

I do take Dexamethasone the day before, day of and morning after (steroid). And 1 Zyrtec an hour before chemo begins. I use Claritan AND 2 Tylenol one hour before each shot (5 days in a row after each infusion) and have had no bone pain. For nausea, I take 1 Compazine night of infusion (only that one) and 1 Flovan am&pm, 3-5 days after with little to no problem. Take all meds with food.

The Taxotere is the toughest of the four chemo drugs (love/hate), so be sure to suck on ice and ice your hands and feet during that entire drip (avoid neuropathy). I've been eating whole foods, and avoiding SOY (important for triple positive), I eat a little something every 4 hours like clockwork (7, 11, 3,, 7) even if I have to force it. I started using protien drinks to supplement (taste buds and appetite go away), and it really helps outlook/energy (still working full time thank God). Take a walk every day (even 10-15 mins). Get lots of sleep. Most importantly, stay positive. Purjeta is one exciting drug for our DX!

If I can help with any more questions/concerns, just say the word, (I'm up at 2:30A giving advice?! I'm sure I've left out something). Stay strong and positive!! Take care, I will be thinking of you often and sending positive mojo your way daily!! You've got this!!!

erinmyhead

ugh! It's Dr. Bragg's all natural apple cider vinegar every morning--not Mott's. Mix 1-2t. In water and add some lemon. Its a little gross, but worth every drop. Also, Zofran in am/pm for nausea (not Flovan). Chemo fog? Going back to sleep now. Sorry.

MommyErin

Erinmyhead- Another Erin!? What a coincidence. I'm so sorry you're going through this as well. You sound like you're rocking it though! Thank you for all the information! So helpful...lots of questions to take to my oncologist now. I consider myself a healthy eater (except my sweet tooth), so I don't think upping my healthy game would really be a drastic change in diet. Sugar and coffee are the big ones I think.

Do you use the coconut oil topically, orally, or both? Started apple cider vinegar this morning (instead of coffee). I luckily had some organic on hand for cleaning fruits and veggies.

Have you tried any herbal teas? Ginger? Do you do plain protein powder or flavored? Whey protein? I'm estrogen negative and only 4% for progesterone, so soy isn't a huge issue, but I'm still playing planning to avoid it. Stay strong and keep me updated on your progress

erinmyhead

Hello again my sister from another mister! Couple of things: check out the recent article herein regarding soy being good (as long as you're not triple positive). Sugar and coffee are my biggest losses (worth it; but herbal teas have made it an easier switch). I use the organic coconut oil both orally and topically. I normally love ginger, but the organic chews burn my mouth so I avoid those! I do make a "juice" with water, cucumber, lemon, ginger, mint in a 2-liter; let it steep overnight, then strain it & drink it the next day. It's refreshing and seems to help my intestines. My Onc wants to narcotic every SE, but I really avoid further chemicals--and these things seem to work. Keep in touch yourself; stay positive!! I truly discount all the bad articles, unless it comes to fruition, nothing is going to stop me from beating this thing. I pray it all goes well for you. Hopefully, you'll get chemo before surgery so you can see/feel/know your TX is working. Talk to you soon....

MommyErin

Erinmyhead- How are you feeling friend? My first treatment was scheduled for today but got pushed back to tomorrow because my Dr. appt ran over, so 8am tomorrow it is! I'm feeling better than I did at first, much more positive. Just trying to wrap my head around ALL the medications I'm supposed to be taking pre and post treatment. Uff da! It's a lot to get used to when I normally only take a multivitamin. Tried out my juicer this afternoon afternoon and am totally pumped for my carrot, beet, ginger cancer fighting juice. I'm definitely trying your cucumber, lemon, ginger, and mint juice suggestion as well! Hope you're doing well. Treatment next week for you?

jackboo09

hi

Just been given my tx plan for stage 4 her 2.

Taxotere/ Perjeta/Herceptin.

Scared

MommyErin

Jackboo09- I'm so sorry! I was in the exact same situation last week. It was crushing to hear "stage 4." Last night I asked my mom about her friend who had a long BC journey. She was diagnosed with breast cancer in her 20s. Mets/Stage 4 in her 30s. Now at 57, she's still going strong and living a full life. Think positive and stay strong! You can do this! When do you start treatment? Has your doctor mentioned anything about possibly adding carboplatin? Apparently it's strong, but does the job well. I'm hoping I tolerate it, otherwise I'll drop down to THP. Hang in there! We're all in this together.

catsteme

Yes, there are lots of examples of people living with Stage 4 for a very long time. I was diagnosed with Stage 4 a year ago and it has been a constant rollercoaster of ups and downs - anticipation, dread and relief. I've now learnt to cope (most of the time) by pushing it to the back of my mind and doing 'normal' things that make me happy. This seems impossible at first as the dread is all consuming, but it does get easier to do - I promise. It takes time though, and it is very normal to be scared. I'm not into bucket list stuff - I just want to have a normal happy life for as long as I can. There's someone (I think it's on this forum) that has a tagline 'not today cancer' which is something I remind myself whenever it starts occupying too much of my thoughts. My view is that cancer is very likely to shorten my life so I'm going to fight like crazy to stop it taking the pleasure away from the days I am here.

I'm also likely to be starting THP shortly as my current treatment (TDM1) is failing. My onc hasn't mentioned carboplatin - definitely something to ask about during my appointment. Does anyone know whether your hair grows back after the Taxotere is dropped?

jackboo09 - I read on another thread that you have medistinal node involvement. I have this too (with additional mets to the sternum) - feel free to PM me. I'm in the UK also.

Hang in there everyone - we're here for the long haul!

argynis

I take steroids the evening before, morning/evening on the day of chemo and the morning after. Taking a Benadryl tablet for 2-3 days after chemo just before going to bed works great for me as it makes me super sleepy. It allows me to sleep all night even tough steroids make me super jumpy.

All the best!

jackboo09

argynis

Thanks for the advice on sleeping through steroids. I have forgotten all of this as 6 years has passed.

I am picking up a prescription for Lorazrpam today but will need something long term and non addictive if possible. My biggest hurdle here is psychologically adjusting and getting past the extreme anxiety. I managed 6 Taxotere last time but facing it this time is far worse.

L

jackboo09

MommyErin

Had Carboplatin in 2011 but just the one chemo this time. Was told that THP is the recommendation and gold standard for Her2 metastatic BC. I will mention it though.

Best wishes

Liz

livebig

Hello Erin - and others! I am just a tiny bit ahead of you in treatments with a very similar diagnosis. Stage 4 IDC with 2 small mets to my liver.

I just finished my 4th round of TCHP on Monday and am resurfacing a bit. I have 3 young kids and an active life - so figuring out the new normal has been the biggest challenge, but I want to encourage you in any way I can as you walk forwaed.

As far as the Carbo - my onc did say that THP is the standard for stage 4, but he was willing to let me add Carbo to be as aggressive as possible - since my mets are few.

also, with the TCHP, I didn't lose my hair the first round. I know it's different for everyone, but that helped give me a bit more time to wrap my head around everything so it wasn't all happening at once.

I do second the being as active as you can as well. I think that helps not only my mental outlook but oddly my fatigue and muscle/bone pain.

All the best

AnnieBanannie

How are you doing MommyErin?

This is my very first post here, but I was diagnosed in November 2015 with Stage IIIA triple positive IDC. I finished six rounds of TCHP last April and completed my year of Herceptin this past January.

I'm so sorry you are going through this!

I just had to register and post because my very best tip for TCHP is something I have not read before. Hopefully this doesn't happen to you (or any of you others going through this!) but this regimen gave me severe diarrhea. I had a few bouts that took upwards of 10 Immodium to stop it. The BEST thing I figured out to do was to take Immodium preemptively! For me, the diarrhea usually started once I got past the 72 hour mark and was otherwise feeling better and it often struck worse at night. Starting day 3 I would take one or two Immodium before going to bed and it helped immensely. I still had some bouts in the second week but once I figured out to take the Immodium before it got going my life got a lot easier! I think of it as similar to staying on top of the nausea by taking Zofran before you feel sick.

Of course don't do this if the TCHP is not giving you the trots! I imagine it would cause some crazy constipation otherwise!

Best wishes to you.

Moderators

Thanks for chiming in, AnnieBanannie! These first-person experiences are so valuable to members just starting down this road.

The Mods

livebig

hi Annie Banannie

How would you describe your #5 and #6 of TCHP? I just finished round 4 and side effects have hit me much harder - especially muscle pain and diarrhea. I know my onc warned that the bounce back is not as good each round moving forward,but curious to hear from someone's experience.

Great tip on taking the Imodium before things get ugly.

AnnieBanannie

Hello livebig! I am sending hugs to you. So sorry you are having to go through this.

Rounds 5 and 6 definitely took longer to recover from than the others. I don't recall much in the way of muscle aches before round 6, but I definitely had them after the last one. The mouth changes got a little worse with each round so that by round six I could only stand to eat smooth texture-less food (lots of avocadoes and bananas!). I also had the "taxotears" pretty bad by then. My eyes teared constantly and I got lots of pitying looks at the grocery store. There I was with a scarf on my head (clearly bald) with tears streaming down my face picking out milk for my kids. I wanted to tell everyone "I'm not crying I promise!". Mostly I just remember dragging more and lacking energy. BUT I also want to say that emotionally it was not as difficult as the first few rounds! I knew how to handle the side effects, I knew what to expect, so in that way they were easier.

I saw that you wrote above that you have three young kids and are used to active lifestyle. I have three young kids too! I was still nursing the youngest when I was diagnosed. And I want to encourage to continue being active as much as you can. I ran and hiked through chemo and I really think it helped me mentally in a big way. It was great stress relief. I would take the first 10 days off after chemo and then run every other day until the next round. I ran through radiation too. That was a breeze compared to chemo and I think running helped me keep my energy up.

After your 6th round will you get a break and just have Herceptin and Perjeta? My very best wishes to you.

jackboo09

Hi to everybody

I am now following this thread with keen interest as I am due to start in 2 weeks time. There is so much to think about and I am quite sure I will be re-reading about side effects.

My big question in my head is: will it work. My tumour is in my chest close to blood vessels. If it shrinks then cyber knife rads are possible. I will have a scan after THP treatment 3 to check progress. The location of this mass worries me but it's systemic therapy so in theory should attack it wherever. So many of you are very positive on here. I am trying to get to the same point.

I walked ( as in exercised) during TCH 6 years ago and want to aim for the same again.

Starting probiotics but not taking any drinks, supplements yet. Any ideas welcome. I eat apples, bananas, blueberries, avocados and mainly carrots , peas and broccoli veg wise. I do have one coffee a day and haven't gone sugar free. This might not be hitting the 5 portions a day.

Thinking of you all as you go through this. My turn soon.

catsteme

Hi Liz - just sent you a PM but for anyone else reading this thread - there's a fantastic book called 'Radical Remission'. It's full of stories about people who have reached NED against all odds and has loads of practical advice on diet, exercise, attitude etc... Well worth reading (or as I prefer, listening to on Audible).

jackboo09

Hi Catsteme

Just ordered this book and another cookbook: The Royal Marsden cancer cookbook.

Trying to increase fruit and vegetables and eliminate sugar. And walking at least an hour each day. I'd like to aim for this during the treatment.

Thanks for this.

Liz

MommyErin

Livebig- I have two small children (one of whom I had to wean from nursing over the past couple weeks). Finding a new normal is going to be a challenge, but I have a supportive family helping out.

Treatment yesterday went well. The IV was definitely the worst part, so I'm looking forward to having my port placed before the next one. I received Benadryl as a premed and it knocked me out for the last couple hours of treatment and once I got home as well. I took melatonin to help me sleep last night and it worked well, so I'm going to continue with that. This morning I woke up feeling fine. My mouth is a little dry and flavors are off, but otherwise I feel close to "normal." I'm drinking my TBSP of apple cider vinegar and my carrot, beet, ginger juice. Hoping it helps! My mom is staying with us now and she's a coffee drinker, so I'm definitely missing my morning coffee smelling hers. Will power!

AnnieBanannie- Thank you for sharing your personal experience. My oncologist fortunately warned me about the diarriah, so I do have meds to take should that occur.

Catsteme- I'll definitely look into the book. Thanks!

Hang in there brave ladies! My thoughts and prayers are with you all

livebig

@ mommyerin and anniebanannie - I also was nursing my third when I was diagnosed. Seriously such a roller coaster - so glad you (mommyerin) have some great support. That helped me so much with continuing some stability at home and being able to step away for a bit (you know...to have that 15 minute freak out weeping session). I also had my port placed after the first round and I am so glad to have it now! I was worried about the procedure but it was actually not near as scary as I thought and recovery was smooth - despite being on chemo already.

@ anniebanannie - I am a runner too! Why do my friends think I'm crazy? Haha! I've done like you - knocked out from chemo first 7-10 days, then run like crazy. Good for my soul! Love hearing from someone else just as "crazy!" After my 6 rounds I will have a double mastectomy - removing a bunch of nodes too. Then likely radiation. Curious how this will change my running life? Send me tips girl!

@ jackboo - sending you good vibes for the start of treatment again. You are strong! And since the treatment is systemic - that chest tumor doesn't stand a chance! Stay positive!So glad to connect with you all!

MommyErin

So, first couple days post-chemo I was sleepy but fine. Today...ugh! My appetite has gone away over the course of the day. I managed a good oatmeal/protein breakfast, a soft pretzel, and a mango lasse, but the thought of dinner is so unappealing. Nausea: check. Other icky side effects: check. Please tell me I'm just in a short slump and will start feeling better in a day or two! I have ALL the meds and am taking them, but I'm stil getting my butt kicked today.

BellasMomToo

MommyErin:

I didn't start feeling better until about 1 1/2 weeks after chemo. My 1st chemo contained double doses of herceptin & perjeta. Perjeta is known to cause diarrhea and I had it bad. So bad that Imodium didn't work and I had to get an anti-diarrhea RX (for Diphen/Atropine) from my MO. I also lost my appetite but forced myself to eat. Food started tasting funny/intense -- like sweets were TOO SWEET and salty was TOO SALTY. I had very little nausea but took anti-nausea meds as preventitive.

I wish I had better news. I hope your SEs are very mild.

After my 2nd chemo, the bad heartburn/stomach acid and gas started. Prilosec OTC, Pepcid AC, and Gas-X helped me. Also I had less diarrhea but more constipation -- I seemed to go back and forth w/o any warning or reason. "Smooth Move" tea (can buy it at Target or any grocery store) helped with the constipation. (It taste like dirt but was managable). I also took a stool softener almost daily just so I didn't have to suffer too much.

Again, I hope your SEs are very mild. But if they aren't -- HANG IN THERE! YOU CAN DO IT!

livebig

Hang tough mommyerin! My worst days for nausea and loss of appetite were days 3-6. On Day 7 I felt a ton better in that department, but was still fatigued and had diarrhea that was somewhat manageable with Imodium. I also had bone pain from the neulasta shot, but walking and just being active with my kids helped. By day 10 or so I was back to a somewhat "normal" routine. each round was a slower bounce back and side effects were a bit worse, but for the most part very similar to my first.

In some ways, the first round is so tough because you're not exactly sure what side effects to expect and also don't know when that relief period will come - for some it's day 6 for others day 15! All so individual.

Just think - every day behind you equals more cancer cells being obliterated!

You can do this! Cheering for you and hoping your relief comes soon! Rest is hard with littles, but does help

MommyErin

Thank you BellasMomToo and livebig,

Yesterday was better and besides GI SEs, today is going ok as well. Just getting used to it all I guess.

How is everyone else doing? Physically? Emotionally? Thinking about you all and sending positive, strong vibes