Starting Chemo May 2019
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Good morning everyone! I haven't been able to post much - recovering from TC #3 (6/4), and work has been insanely busy. I finally feel like I had a productive week for the first time in months.... But it was exhausting.
It sounds like everyone here has had some ups and downs, highs and lows - seems to be the nature of the journey. I feel like we are all on a roller coaster ride of good news/bad news..... But WOW! I'm impressed with the strength and courage of this group, and the support and encouragement offered here for all, no judgment. We each have to walk this path in the way we think is best. I guess one of my frustrations is lack of a crystal ball. Is this chemo hell worth it, or am I just going to have a recurrence anyway in 2 years?
Overall treatment #3 SEs have been a little more manageable - still battling digestive issues and exhaustion. After #2, I had a weird 24 hours where my blood pressure was through the roof. After #3, I had a weird 24 hours where my BP was so low I thought I was going to pass out. Go figure.....
I realized this weekend how much strength I've lost since surgery in February. I spent a few hours yesterday catching up on some maintenance items, and by 2:00 I could not move, even though I was careful to insert frequent rest breaks. My legs felt like I'd run a marathon, and my arms felt like I'd been lifting weights. I have a lot of work to do post-treatment to regain strength! So frustrating! I'm always the energizer bunny and can just go all day....
One more TC (6/26) and then 4 weeks of radiation.
My best friend, who is being treated for MBC (liver and bones), is coming next weekend; I am really looking forward to visiting with her. Although I always feel bad discussing any of my issues; they are so minor compared to hers.
Hugs and positive thoughts to all! Happy Father's Day to the Dads. Thank you all for your strength, courage, and encouragement. And as a friend signs his emails.... Make it a great day!
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Happy father’s day to everybody celebrating and happy Saturday too.
My boyfriend buzzed my head
What a crazy thing.
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Gorgeous!
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Hi all! Newbie here. I feel like I'm late to the party! I just found this thread, but I started my first round at the end of May so I thought I'd say hi. I would love to learn from/lament with/encourage you all!!
Looking at 6 rounds TCHP, one is done and having the next one on Tuesday. Very nervous to see if things get better or if they build. Honestly the worst part of Round 1 was the neulasta (actually, I'm getting a generic) pain! Could not get out of bed for 2 days.
I'm doing scalp cooling and fasting. Tried to do keto but the awful mouth changes after round one made it impossible.
Have three little kids (6,4,1) and I'm a stay at home mom, so figuring out how to rest and take care of the kids has been rough. Any other young moms out there?
After chemo, probably single MX but could change based on my genetics results (don't have them yet).
My docs are on the fence about radiation - I only had “isolated tumor cells" in one node and I guess that's not very common and there's no clear clinical recommendation one way or the other for radiation. If anyone else is in the same boat, I'd love to hear what you're doing!
Thanks all ♥️♥️
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Britt, You look great with your buzz. Thanks for the pic. Good to see a face with your name. Keep the faith.
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@IM2C I am triple positive with micromets. Sorry I am only a Young MiMi (gma 50) of 3 amazing boys ages 1.5, 2.5, and 7 ...
Have you found the Triple Positive thread and support groups on Facebook, just have to weed through some posts. There is a thread of long term survivors of Triple Positive as well.
6 rounds TCHP with Neulesta, then 12 H&P and a hormone blocker, I forgot the name. Rads and MX are undecided.
My #1 TCHP was May 13th, I had the Neulasta, after a huge fight (Onc cares more about $ then Proper Treatment Regime), but only had fatigue and mouth sores, on Days 3&4, everyday got better. My #2 TCHP was June 3rd, and I had to settle for the 'biosilimar' Undenyca, and only 1/2 bag fluids, grrr.. which led me to the Emergency Room the next day with severe dehydration, severe nausea, severe cramping, severe migraine, etc etc. 2 bags of fluids later and many tests, oh WBC 32, sent home., Which has led me to a New Oncologist this Wednesday.
Tip I learned is to have 15 min of fluids between each drug TCHP and then stay after to finish that bag or even do another bag of fluids. It as helped many to continue to work through their treatments. I wish I lived closer to an infusion center to get a bag a week, sure does help ALOT!!
Are you doing Cold Therapy, mouth, hands & feet) along with your cap?
BRIT - you look Great!
Happy Daddy's Day to all the Dads and single Moms
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Well thank you!! Spent the day at a lake in N. AZ with our daughter and her 2 kids. Pretty special. Nat feels like 100% . Probably because she has this delay in chemo. A bummer but fun to see her at basically 100%. Back to chemo #3 AC a week from tomorrow. Sure praying all goes well and we can get #4 done on time and on to the 12 weekly T's.
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I had a lovely, tiring day with family. I went to the grocery early to get some produce, which I was craving after eating a lot of meat last week trying to boost my iron and RBC. When I got home, Son was on video call with my husband. This is Son's first Father's Day. He was holding his sweet baby James for us to see, and so James could see us. Got a smile out of the little boy. He is about 10 weeks old now. So we had a nice visit with them.
Daughter #1 came over around 11:15 and stayed until about 5:15. We don't get a long, uninterrupted visit with her often. I made lunch of a red sauce with Italian sausage and sauteed zucchini over fried polenta, and a green salad. Very tasty! She doesn't eat interesting food often because her children are not very adventurous, so she enjoyed it, too. Homemade brownies for dessert.
I was enjoying her company enough not to retreat for a nap.
A bit later, Daughter #2 called in for video chat with my husband. I stayed out of most of it but did make an appearance for a few minutes.
All 3 children saw my bald head today for the first time. None were freaked out by it. The baby now has more hair than I do.
In fact, my son, who is in the Air Force and keeps his hair at about 1/8" long, has more hair than I do right now. It is pretty interesting how much he looks like me, something nowhere near as apparent when my locks were long. Looking forward to this week, hoping to feel a bit more energetic. Next Friday is #3/4 AC.
Wishing you all many blessings as you take on the next few days.
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The 4th EC is in the bag! Now off to weekly Taxol as of July 1.
Work kept me really busy last week, so I have a lot of catch up to do here!.
Hope everyone is doing reasonably well, warmest greetings from Europe!
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Hello LaCombattante! Congrats on finishing the EC! We just keeping checking on these treatments and other tasks. Good luck with taxol.
Hi IM2C, welcome to our group. People here are kind and supportive to one another. Of course we all have our ups and downs with treatment and other parts of our lives, too.
I've been meaning to comment, for those of you wearing BANDANAS and SCARVES: If you struggle to tie the scarf neatly at the nape of your neck, you can just loop a hair scrunchie around it, like you would around a pony tail. It's easier and neater and doesn't require as much fabric.
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Gorgeous Britt!!!! Thanks for sharing. Hold your head high and show those beautiful eyes.
IM2C - welcome - sorry you have to be here with us. It is a supportive community though. I'm triple positive also. Just finished round 3 of TCHP last Tuesday - haven't had to have Nuelasta yet (thankfully). I had BMX 3/13 - I chose to remove both with can$er only in one and I'm staying flat. Hoping to reduce my chances of going through this again. I do not have to have radiation since it did not spread to nodes. No young kids at home for me. That must be very challenging. My biggest advice would be take every ounce of offer you get from friends/family/etc to help. Make a list and let them at it!
Congrats LaCombattante! Those milestones are awesome!
SJWhitten - sounds like you've been busy! I've had super low BP also - it's crazy. I asked NP about it and she just said go to the ER if it gets too low and you have symptoms - what the heck is too low!? I can't tell if the exhaustion is from low BP, low red, or just everything all balled up in one!
Hope everyone has a minimal SE day!
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Hello everyone,
I was recently diagnosed triple positive and will begin chemo on this Thursday. I'm Working to keep myself positive and supported as I move into this unknown place. I'm so thankful to have all of you hear to talk with, reach out to, and learn what I don't even know that I don't even know
Right now the plan is 6 rounds every 3weeks of TCHP. Followed by lumpectomy, continuing with HP for the year, radiation 5 weeks, then Anmidex for 5 yrs. one heck of a plan..... ugh.
I'm incorporating as many holistic avenues as well, dietary, massage, acupuncture, meditation AND cold gloves and socks!!
Any other suggestions you may have I'm open to learning and expiring. Again I feel blessed to have all of us here to support each other!
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ptcgal I’m from the October group but my plan was the same as yours except due to the size of my tumor and that I was identified as clinically IBC I had a mastectomy. TCHP was tough but doable, I got through the 6 rounds, surgery went well and I had a total response to chemo including nodes of which one had previously tested positive. Just finished radiation June 10 and my skin held up pretty good, almost back to normal. I’m still doing herceptin/perjeta every 3 weeks, but my hair is growing back and I’m feeling stronger. You can do this
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Oh my gosh THANK YOU!! This is exactly what I need to behearing now. My hope is to work limited days and hours until I need to be home doing a lot of self care. I’m taking 2 weeks off after Thursday to see how I respond and then decide on working. Knowing that you are on the other side of the chemo with a positive results as of now lifts my spirts.
So glad your skin and hair are being to grow and are responding, and you are getting strong each day
Again thank you!
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TCHP can be tough but I got through it with help and encouragement from people here, if you ever need advice let me know
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@ptcgal: you can do it! I’m only one round in (second tomorrow) but I found it much harder to be on your side of it (treatment not yet started, doctors visits upon doctors visits, trying to come to terms with diagnosis). Once treatment actually started, the fear of the unknown left a bit and I felt like I had something to actually work towards! That may not be true for everyone, but my point is: it gets better and you’ll start to figure things out!
@alicesneed: hi! I’m a Dayton gal too. Question for you (or others in the same boat): what do you mean when you say you haven’t needed neulasta yet? My doc didn’t give me a choice - I just assumed it was always a necessary thing. What determines whether you know if you “need” it or not? I’m very encouraged to hear maybe I could push to NOT have it. Thx!!
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IM2C - Your question about neulasta wasn't directed at me, but I'll give you my experience,in case it helps you. TC treatment #1 I did not get Neulasta. Was having some issues a week later and went to see NP. She did count, and my white count was very low, so she ordered neupogen shots for the next two days. She said I needed Neulasta automatically for my other treatments.
Had my white count been good, she would not have ordered the Neupogen or Neulasta. I think it just depends on how your body responds. if your white count drops, they may want you to have Neulasta. The alternative is being very susceptible to infections.
Hope that helps a little.
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Hi ladies,
Wanted to say hello, and thank you all for sharing your experiences. I've found these forums so helpful and comforting in a time that's been pretty chaotic to say the least! I was diagnosed w/ invasive ductal carcinoma last month (ER+ PR- HER2+) and had my first round of TCHP on June 4th. I have 5 rounds to go. Then will decide between a double mastectomy or lumpectomy + radiation as well as hormonal therapy for a year.
@PTCgal I think we are on a pretty similar treatment plan. I also did IVF leading up to my chemo (which left me w/ some fun stomach issues leading into chemo that I'm hoping I won't experience round 2. Regarding chemo, the side effects were not as intense as I had expected. I know everyone reacts differently. For me treatment day was fine... I slept through most of it. I'm doing the DigniCap (in hopes of saving my hair for my wedding next year) and ended up popping an Ativan and a pain pill. I also did icepacks on my hands, feet and brows (why not?) during Taxol. They also recommended sucking on icecubes during Taxol to avoid mouth sores. Popsicles also would work! Day 2, I felt pretty good still likely due to the steroids. Day 3 and 4 were the hardest for me, but still manageable. It kind of felt like a bad hangover I couldn't shake and I ran out of energy pretty quickly. Small meals and lots of water were key. My doctor also suggested I get Biotène mouthwash- it came in handy. Each day after that was noticeably better. Now two weeks out, I feel pretty much back to normal.
I'm also exploring holistic routes and diets. I would suggest checking out "AntiCancer: The New Way of Life." It was written by a doctor who got a brain tumor and began researching how diet and environmental factors can affect your body/ cancer. There are great tips and studies to back them up. A friend who went through chemo a year ago also sent me a cookbook called The Cancer Fighting Kitchen and full of recipes with cancer fighting ingredients. Plus it's geared towards people going through chemo (i.e. recipes if you are constipated, if you have mouthsores, etc.).
One last thing, not sure if it's totally effective, but I had heard good things about Brian Joseph's Brow and Lash Gel- it's all natural and is supposed to save your brows/ lashes during chemo... I've been using it for two weeks and so far so good, but TBD. Anyone else had luck with this?
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IM2C - hey fellow Daytonian! I asked my MO about nuelasta my first round since she didn't mention it and I had heard of so many who had it. She said I would only need it if my white count fell too low. It has dipped as low as 2.6 but always rebounded before next infusion. I'm not sure what 'too low' is - but thankful I don't have to have it! (one less drug in this body) Good luck today with round 2! Keep us posted.
Welcome PTCgal & Six - sorry you have to be here with us. I'm on TCHP also - but already had BMX in March. I'm half way through. I'm doing acupuncture after each round and finding it does help. Diet is toughest for me since appetite is so poor. I do have the cookbook you mention Six - need to try some recipes from there!
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MountainMia. Best wishes on #3 this Friday. We’ll be doing #3 on Monday after an 11 day delay. Anxious but scared to get back to it. Nat’s prognosis is good so we don’t like delays. I seem to have some lower intestinal issues. I think it is stress. Nat jokingly tells me to get a grip and let’s get on with this. Keep us posted on your # 3 and let’s move on to T soon!!!
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Britt: You. Are. Gorgeous.
UpStateNewYorker, good luck with the next chemo. I think you made the right decision to continue and wishing you minimal SEs this time
MountainMia: good luck with the 3rd treatment, I will be thinking about you on Friday!
Jrominger: good to hear that Nat will be continuing her treatment; understand your concerns about the delay, but I was assured by my Onco that getting the full does is most important. Here is to hoping that from now on it will be as uneventful as it can be for Nat!
Alicesneed and IM2C: I spent quite some time in Dayton for work. Loved it there! Alas, since changing my job 10 years ago I haven't had a chance to visit.
HappyAnyway: you have your 1st Taxol coming Monday, right? Keep us posted how it goes!
Sending positive vibes from across the pond
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Thanks Lacomb, I will be speaking to MO before chemo. Have about 15 questions for her. Going to ask for extra iv fluids between drugs to ease se's. Wish me luck.
I believe happyanyway's chemo is this Friday for her Taxol. Best wishes to her too.
Welcome to the newcomers on the board. There is lots of love and support here and a wealth of information.
Prayers and well-wishes to those undergoing next treatments. I pray for all of you each night.
Keep the faith, everyone😊
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Welcome new people!
Congratulations, LaCombattante, on moving on to Taxol! UpstateNYer is right, I begin Taxol on Friday.
UpstateNYer, I hope your MO helps to ease your SE.
Hello to everyone! I hope you all have as great a day as possible.
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Must be my chemo brain:) Good luck on Friday!0 -
I think it's sweet that you thought of me!
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LaCombattante, you are good... addressing and almost remembering what is going on with everyone
what regime are you on, no chemo brain fog? It is so frustrating some days. This is my 4th time proofreading HAHA.. YES Upstater, extra fluids is a good thing to help with SE's, even while sitting there, drink or take small med cups and do shots every 15 minutes, this is trick I learned during Gastric Bypass 5 years ago and still use it today because I am hydration challenged LOL... some also say eat protein snacks every few hours as well, some say Fasting works... it's all trail and error til you find yours... Hey, a few easy ones for nausea, get the Sea Bond wrist thingys and Tramsderm patch that's goes behind your ear, they worked for me.
I meet with new Oncologist today... good news, HE WAS GREAT ... never had a doctor sit almost knee to knee with me, show me protocols and research data to support his recommendations, WOW... anywho, he is switching me to a new regime on Monday, staying with same schedule thank goodness.
AC for 4 rounds, then 2 rounds of THP and then HP for a year (I am Triple Positive with micromets in Sentinal node) ... Radiation and Mastectomy are on the fence, for me anyway. I had 2 rounds of TCHP with former nightmare Onc and based on New Onc information, they "may" have "almost" overdosed me, (gotta becarful with words, haha)... no wonder I was so sick, and debilitating mouth sores, ugggg... New Onc is sending my former Regimes to the NCCN Board (National Comprehensive Cancer Center) for review.
Here is to staying Positive and Always areMoving Forward for All of Us!!
As I tell my kids, Keep Flipping Moving Forward...
Have a Bright Sun Shinny day !!
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I see that we all are constantly thinking and praying for one another!! It is the best group of people I've found. It is good to bounce things off one another to get ideas, 2nd and 3rd opinions and prayer requests!! I'm grateful that you let a dude in the group
Speaking of prayer requests how are your veins? I hope improving. We head back down to PX on Monday for round 3 AC after 11 days off. Nat is like 100%. I can't keep her down. Stationary bike for 30 min. Gardening etc. I think that is a great sign for when everyone is done the recovery seems to go quickly, however she only had the 2 AC's so far. Please say a prayer for no more major SEs like that weird diverticulitis that put us off for 11 days. I sure pray for everyone here and within the year we will all be CPR or NED!!!J
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Hey jrominger! My vein doesn't hurt anymore, that's good! I'm not going to let anyone near it for a while. Sounds like Nat is doing well. That's awesome! I will be thinking of you both on Monday.
Kimmh012 and everyone else taking AC, I wish I would have iced my hands during Adriamycin. The Adriamycin push only took 10 minutes for me. My nails look bruised. MO said that I shouldn't lose them, but they aren't pretty. Hopefully no one else will experience that.
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I think people can ask for a slower drip too.....
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Kimmh- so glad you found a MO that you like. Good that you can get started soon. That is great news, you were in my thoughts and prayers today. I had 3rd round of T/C today. My MO agreed to extra fluids and also reduced my chemo dosages by 10%. Hopefully se's will be reduced this weekend.
Happyanyway- glad your veins are better. Hope they stay that way. Sorry about your nail changes, but hopefully is only temporary.
Jrom- Nat will be in my thoughts and prayers on Monday. Glad that she is feeling better. That is awesome.
Lacombattant- good luck with your Taxol treatments.
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