Chemo Starting September 2018
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vlynn I'm hearing you - it is such a shock! But I am far more experienced with this! I've had my second treatment (AC fortnightly). It's day 4 now. This day last cycle, I could barely swallow, mouth and throat felt rinsed with acid, I think I slept 20 out of 24 hours, my bones ached, and I really doubted whether I could do it. My daughter made me a cup of green tea and I cried!! I'm not a good crier, so that was a big deal. I lost 3kg in those first few days. (Fancy considering weight loss to be a bad thing!)
This cycle, I have additional anti nausea meds, one recommended is just over the counter, and I am eating, therefore have more energy. I can't believe the difference so far, but the steroids I take for the first three days will start to wear off today and I may go downhill. Learning all the way:-)
I'm loving all the hair shots! By the end of this weekend I don't think I'll have any left on my head. Mine is grey and in a short cut normally. I decided not to cold cap as I it sounded so horrible - I hate cold. And I think I can be content with scarves and hats - maybe there'll be a wig later, but not in our Australian summer, I think. There's a loose plan to meet up with my two daughters and their young children this afternoon for a buzz cut. I'm concerned that the younger ones, (18m and 2.5) might be pretty spooked if I suddenly look different. the 6yo was soooo impressed (maybe scandalised) when I told him I would shave my head.
Mouth sores - club soda sounds like a great idea. I'm have good success with mixing a good pinch of bicarb of bicarb soda in half a glass of water to rinse.
Love to all!
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Aren't we a sassy collection of cat ladies!
KK2018, Sophie has aged well! pcranky, ,fairchild, wanderweg, M&M, cute kitties! AC #2 went off without a hitch yesterday . I asked the nurse about the ice chips and she said she just moved from Ohio where it was protocol to offer ice chips for EVERYTHING. Now at UCSD, they offer for those proven to cause mouth sores, like Adriamycin.
MO agreed to skip the steroids. Yay! I still got the pre-med infusion steroid, but that's it. He said it is currently protocol to prescribe it and remove it if it causes problems but said they are considering NOT prescribing and adding it as needed. I'm hopeful that the others will do the trick!
He gave me the green light to go back to the gym. I was kind of surprised because of the germ factor, but the guidance was to try to go when there are fewer people and to wipe down equipment. I was doing daily boot camp before this; I think I'm going to start at the YMCA this time. (So says me on day 2 when I feel fine....)
He's writing me a prescription for a "cranial prosthesis" (wig). I'm not sold on it, but I might get one similar to my old hairstyle for special occasions. I guess it depends on how much insurance covers. $$
Warm fuzzies to all of you! xoxo
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Piksie, so glad infusion 2 is so far so good! Let us know how you get on without steroids. I am considering asking to decrease them from 2 pills to 1 (or maybe just taking it into my own hands), though I was so nauseous last time I really don't want to make anything worse.
As for me, I'm on day #11 and the bone pain is no joke! Though it is mostly in my butt, hips and thighs, so actually there have been lots of jokes about butt pain in my house. I am also breaking out like a teenager -- it is awful. I think this is worse for me than the prospect of losing my hair. I don't know how to deal with months of giant pustular teenage acne all over my face, ugh. I also have the appetite of a lumberjack. Assume this is my body making up for lost time unless it is somehow a side effect of the neulasta along with the bone pain.
Hope everyone is hanging in there!
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Just checking in....
@Sue...glad the side effects are "better" this time.
@Piksie...I have been going to my regular yoga studio and just using extra hand sanitizer and then going to the Y but not using the facilities while I'm there. I'm more worried about the Y - all the kids and a lot more people than the yoga studio. But, at the same time, my blood work and white counts are good. AT the Y I have been running into classes and then running out and just carrying hand sanitizer and using it. It makes your hands a little dry.
I did have a Zumba instructor yell at me twice for not jumping yesterday. I had fun telling her why and educating her young self. Needless to say I won't be going back to that class.
@beeline, hear you on the bone pain. I am on Day #10 and it is now mostly in my knees. The oncologist NP says it could be the chemo (taxotere) and not the neulasta. She said to make sure I get plenty of electrolytes. So Smartwater will save us? I had some electrolyte tablets you put in water (Num brand)...I have no idea how they ended up in the house. But I have done that the last couple of days + coconut water and am doing less Advil.
I should share a picture of the chickens roaming my suburban neighborhood yesterday. Felt like I was back in Hawaii.
Good night all!
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new to post on this thread. I joined the october group but I guess I should be here. Been trying to make light of this whole situation when I can but as I'm sitting here waiting to be called back for my 1st AC infusion...I got no jokes! Ugh!
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And....all delayed for a week due to tooth abcess. Awesome! Now I get to get a tooth pulled. Lol Guess better to deal with now than during tx.
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Ccaxt, aw man!!! Sorry for the tooth abscess AND the delay. If you're anxious to get this moving, it's the worst! How did they find that while you were waiting for infusion? Bloodwork?
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I have bad teeth. Had a dentist appt to start addressing, literally, the day after DX. So, cancelled that. Doc looked at my teeth and thought I was ok but wanted to double check with dentist. I went in yesterday and was told I did have an abcess but figured doc would proceed. I was wrong. It was a little bit of relief though. I did still go back to chemo area and spoke in depth with nurse about upcoming treatment and questions I had about chemo, and cold capping. I feel a LITTLE less anxious about it all. BUT, sure next week will be a different story. Lol
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hello
Hoping to gain some insight/peace of mind....
Last week my oncologist called me to say I needed to start chemo due to microinvasion found on pathology when I had a mastectomy due to DCIS. Here is the time line of events and please tell me if this sounds weird and any insight or info is appreciated:
- Biopsy 5/2018- DCIS is high grade, ER/PR negative. MRI showed other areas in the breast that were highly suspected DCIS and my nipple was involved so mastectomy was my only option (6/29/18)
- Pathology came back with microinvasion - breast surgeon wasn't concerned about it. I'm pretty sure she said I'm all clear and I only need to follow up with her to make sure I don't have any local recurrence on the reconstructed breast.
- Met with my oncologist only because she wanted to close the loop (follow up) regarding me needing blood thinners (not seeing her for cancer). She said that microinvasions are treated and thought since the micoinvasion cells were ER/PR + she would put me in menopause and start me on Aromasin. But she wanted to run it by the committee
- Committee says that they suspect more invasive areas and wanted to re-stain my pathology but that I needed chemo
I have not heard back since that phone call (last week 9/20). The waiting is killing me.
What was your experience like when you got diagnosed / starting chemo? NCCN guidelines do say treatment with chemo for microinvasion (I believe at the discretion of the oncologist). Anyone on have a microinvasion? My spot of invasion was only 1mm although the docs think there is more that was hidden by (I think) inflammation.
Any information is appreciated. Sorry for the long, rambling post - I'm feeling so stressed out right now not having any information
Thank you
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Hi All:
I am gearing up for Round 2 of 8 next week. Here is what I did yesterday. (See pics) Before. Before. Then 5 minutes after.. No going back now. All real. Hoping to see everyone on the healthy side of April 2019, When my treatment should be done. PS Ask me what the #TellMe means. Or visit http://www.densebreastscanada.ca/ Chemo Sept 2018 is my crew. Thank you for everything. I feel like I have new best friends now that nobody else would understand.
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Justkeepmoving - I can’t really speak to the micro invasion issue, but I can say my oncotype got delayed so it was from 5/10 when I was diagnosed to 8/31 when I started chemo. I got all the way through reconstruction before chemo started. I had no node involvement and clean margins, but a very aggressive cancer. And yet, my oncologist doesn’t seem concerned about the delay and we’re proceeding - I’m two rounds down now. I understand your worry - the whole process is crazy-making. But I would encourage you to take some control back and call on Monday to ask where things stand. Sometimes things (like my tumor being sent off) fall between the cracks. Don’t just wait - nudge them. Hell, shove them if you need to. Keep us posted!
Elizabeth - I envy your precancer hair - but you look great shaved. I will say several radiologists have told me my extremely dense breasts were a risk factor. I almost always got called back for repeat mammograms and ultrasounds. One radiologist said, “On a scale of 1 to 10 with 1 being the most fatty and 10 being the most dense, you’re an 11.” Still, I thought my healthy lifestyle would protect me. Somehow, an aggressive cancer managed to grow, showing up only as calicifications on my mammogram. It wasn’t until they did a biopsy, just to be safe, that they found IDC. So yeah, women need not only to be told dense tissue is a risk, the need to have it explained how dangerous it really is. I don’t think I really understood the level of risk until I was diagnosed
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Justkeepmoving, this is likely neither insight nor peace of mind, but had I a second chance at my first cancer, I would have pushed for more aggressive treatment. Multi-focal IDC, clear margins, 0/6 nodes. 10 cm DCIS, but they didn't even consider that in my treatment plan. Based on all the pre-surgery imaging, I wish I would have pushed for more lymph node discovery. BS was very surprised at the clean nodes but didn't see a reason for more surgery to confirm. So here I sit 2.5 years later, another mastectomy to remove cancer at the scar line and 18/18 dirty nodes, some of which were probably dirty the first time. But no need for "what ifs". I guess my point, if the committee says chemo, take it seriously, but perhaps a second opinion for peace of mind.
Elizabeth, super cute!!! I also love this collection of new best friends. My best friend here had a BMX about six years ago because of DCIS and dense breasts. (no further treatment) We now call each other "breasties". Some people don't get it, and that's okay...
Day 3 of AC 2 today. Feeling good with an occasional twinge of bone pain; seems like my entire rib cage this time. Last time, it was day 8, only hips/pelvis/lower back. I wish we could count on all infusions being the same, but alas, I don't think so.
My hair is officially falling out. A pinch to my shaved head yields 15-30 hairs. My boys started to draw bald lines in my head last night, so I turned in early. 
Hope you all have a "great as it can be" weekend!
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Piksie - What are you doing fo rthe bone pain? I had it in my hips and thighs the first round and this second round I started taking claritin and aleve twice a day the day before chemo and through to Day 7, just to be safe. Not a hint of bone pain this round. WHo knows if it will work next round, but I plan to do it again.
So general question: I'm on TC, and my hair started falling out Day 17 of the first round. But it's stabilized and although I'm bald-ish (especially on top) not a lot is falling out now. I have it buzzed. I am wondering if I'll see a second big shedding around day 15-17 this round and go completely bald then? Anyone know if that's how it works? Also, I have not shaved my legs since chemo started and they are still completely smooth. I guess chemo makes hair not grow in addition to making it fall out.
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I haven't figured out the bone pain yet. Round 1, I took Claritin through day 5 with no pain so stopped, then got hit unprepared on day 8. Labor-like pains in hips, pelvis, and lower back. It took about 8 hours to get it under control, then ached for about another day. This time, I'm on day 3 and have mild rib cage pain that I'm calling bone pain, but in reading up, it could be from any of these anti-psychotic meds we're taking for nausea. Tonight, I feel like a giant bruise. Like most of my body got a superficial ding of some sort that is sensitive to touch. So I'm about to take a melatonin and call it a night. I have a full weekend and no time to deal with this crap.
Tomorrow is a new day....
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I am on my third week of taxol herceptin. The acne is horrid did not expect that. Bone pain sucks and my hair has started to fall out . It’s all very lame. I appreciate all the advice given and ideas. I know your cat peeps but these are our 4 week old German shorthair puppies. It keeps me sane playing with them. The other is my little six month old kitten Fella she is crazy
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Ginger - It is indeed lame! But look at those puppy bellies! Adorable. I love hounds of any variety. And cute kitty, too. I'm enjoyong all the pet photos along with all the shaved head warrior photos.
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hi friends, just reaching out to share that yesterday was rough. Really allowed myself to emotionally “WHAT IF” myself with the fears until I was bawling. I know God is with me, but still think why oh why me?! Thanks for listening to my whining!
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These last 24 hours have been harder, emotionally, than any since I got my path report. I’m trying to figure out what triggered me. Maybe it’s just the 2nd round catching up with me-I’m a bit more tired, a bit more queasy. Or maybe life outside of cancerville that goes on, and things are sometimes stressful there, too-finances, kids, spouses. It requires so much faith-believing that this will all work, the pain, disfigurement. I don’t feel strong today, I just want to run away from it all, or rather, curl up on the sofa and try not to cry.
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I know exactly how you feel
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checking in my 3rd day after first AC. Doing ok. Have appetite but tired. Port placement went excellent on 25th no discomfort. Going through the infusion was less scary than I thought, not much discomfort from neulasta. Have been having what if days too, we go through so much and cannot predict the future. But we do what we can. I know I personally have been leaning into my faith in Christ more than ever, really helps. Hang in there ladies, we’ll get there together!!
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Heather.. I know how you feel but "What if" is not your friend! "What if" gets put in the corner along with "Dr. Google" and "That girl middle school who compliments by insulting. Throw that What if guy out!
KK and Heather. You should both do something super nice for yourself today
Felt "ok" this week, except for some fatigue
Phase 2 of the hair cutting (last was "short)
i have shaved my head-ish this morning
its an adjustment but i'm getting used to it.
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Hello Ladies, checking in on day 4 after first round of TC. Had bit of nausea so continued the pills till today. Since last couple if days have been hit by bone pain. I started claritin before but not surehow much it has helped. Took tylenol too. First day it was lower back, back n hip pain. Yday it was all over legs, knees. Today it is lil betrer but looking forward to painless days. Did not shave the hair yet, guess not yet prepared. Have not yet shopped the wig either. Will see how it goes.
All of us just got to be strong for us, our families and for everyone who cares for us. Im also keeping strong faith in God in this journey. Hope and best wishes.
Loving all the pics!
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pcranky, I love the look with your glasses! You are definitely owning it!
KK, heather, others who are at an emotional low point - sending you support and comfort from afar. I think of myself as an even-keeled person, but the emotional rollercoaster of this experience has really thrown me. I find it hard to predict what will push me over the edge or when. I found myself going back to the nhs predict site as I came out of the fog of AC #1 and going, oh, right, ok. I am definitely (probably) going to live, at least 5 years. That means the girls will be 10 and 12. Ok, I'll start there and worry about the rest later. But it is far from easy.
Here is my furry baby, Stimp, on her favourite bag,who helps by climbing on top of me every time I sit down.
Edited to add - photo apparently failed to post from my phone will try again later
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AC #2, Day 4: I’m feeling pretty good today. The sensation of being one giant bruise has subsided. I think partly because I’ve stopped taking all the medication, and I’ve upped the Tylenol. Whatever works..... thankfully, I’ve had no threat of nausea. So now I’m off to watch my oldest play soccer.
Guess who can’t stop picking at her hair today...
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hi all. Checking in on everyone. I get my port Tuesday and start ACT the next Tuesday.
Piksie - your haircut is adorable. Hope all continues to go well for you. I hope I can go to the soccer fields on day 4!
Beeline - I feel your emotion. I get to that place sometimes as well. It’s so tough to get back out of it and stop “what if” and “how long.” I do fear that once treatment starts, it will affect me bad emotionally. So many things to be concerned about. This whole process is overwhelming.
Pcranky - great haircut! Everyone looks so awesome with their cuts. Love your words on the “what if” and “dr google”. So true.
Kk - some days can be so hard. I wake up sometimes and just know, in my stomach, that it’s gojng to be “one of those days”. It’s hard to push out from under those days. I fear that chemo will make it tougher on me. Sounds like you are halfway through your AC? Perhaps there is a silver lining. I try to find those linings often and it’s tough. Hoping your SEs stay to a minimum. Do you have an end date for treatment? I hope to have one soon (even though I haven’t started yet). That’s the date it seems to aim for. Ugh.0 -
hello ladies, I haven’t checked in a few days. Was feeling good and dealing with life- work, mother in the hospital and lazy siblings- but I was handling it in a more normal way until yesterday when I lost a filling. It’s so ironic because it’s the first time I’ve really had an appetite- bit into the piece of pizza and out it came. It’s a big one too. I have unwisely been googling if I could possibly have it replaced during chemo. Doesn’t look promising. Came across some really frightening pictures of what can happen to your mouth. Honestly I’m a little freaked. For now I have some orthodontic wax stuffed in there. Anyone have any experience in the murky waters of dental work during chemo? I will definitely call my MO on Monday. I’ve called them a couple times- chemo rash and constipation -although they say don’t hesitate to call, I don’t feel they’re super helpful.
My goodness I look at the 3 months stretching ahead of me I just don’t know how I’m going to make it through. Nearly every day there’s some fresh hell. KK, Heather I get it there are days that you just want to curl up on the couch and just not move
Thanks for being out there ladies looking at your haircuts, your puppies and kitties, and your courage makes me feel more human. Shave my head tomorrow… Won’t be so elegant as some of you,
Here’s to making it throug
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Oh those what if‘s! Those will get you every time. I think we’re all going to have days where we feel down and scared and just don’t wanna do this anymore.
pcranky - I had the same thought that I would just have to get used to my buzz cut. And now that my hair is falling out like crazy, I miss the buzz cut! It sure beat his balding thing I have going.
piksie - I envy your thick hair. And I also have problems not messing with mine. I will stand over the sink with my head bent and rub my head just to see how much falls out. But I figure it’s going to fall out whether I do that or not, so why not entertain myself? When this current round of chemo really kicks in on thhair cells, I won’t have anything to fall out anymore. (and as I type this, I keep brushing small hairs off my iPad).
Sadlynew - my end date, or the last chemo infusion, is scheduled for 11/02. I’m hoping nothing causes that to get pushed back. Now that you have your start date in early October, I hope you will continue with this thread in addition to the October thread. My chemo started 8/31, so this seemed like the best group for me. But I am also in the August group and it helps to hear from people who are just a little ahead of me. Very encouraging and informative.
MandM - I hope the MO feels there is a way to fix your tooth. That would be a long time to go without a filling. I think I chipped a little off a tooth but fortunately it isn’t painful, so I’m waiting. But if it hurt, that would be a different story.
So, I’m on Day 10 of my second round and feeling pretty good. My appetite has come back with a vengeance and things don’t taste rotten any more. We went out for lunch yesterday for my birthday, and I sat at an outside table with my balding head in a scarf eating lobster bisque and chicken fettuccine Alfredo and had this sudden thought: I can do this. I know next round will be tougher, but I’m trying to enjoy the good days while I have them.
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wanderweg, you look adorable in your picture. I’m so glad to hear SEs are at a minimum. My last AC is the day before thanksgiving. Should make for a wonderful holiday. (Insert sarcasm). Then 12 rounds of T. I’m calculating my last treatment to be the end of February. I’ve heard that T can be a little better than AC as far as SE but for some, it’s the opposite. I do love this group and plan to stay connected with this one as well as October. I agree that it helps so much to listen to those who are just a little ahead.
Hoping treatment continues to be as kind to you as can be.
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Beeline, love ur attitude that will start at 5 year mark n will worry abt rest later. Trying to take one day at a time is tougher but we gotta do it.
Piksie, ur haircut looks awesome, love it. Hope u enjoyed the soccer game.
Sadlynew, best wishes to begin the treatment, every small step is taking us towards to end of this fight. We are lucky to have each other's support here. I like ur thought of looking at the silver lining.
Mandm37, hope MO is able to prescribe some med for you. Cant imagine tooth ache along with these side effects. Your strength is inspirational. Praying for continued strength.
Wandereeg, you are beautiful! Belated bday wishes. The blue color is so adorable and suits you perfectly. Thanks for planting' I can do this' thought in my mind too.
I am feeling much better today. No nausea, did yoga and bone pain is much less. But today when i woke up, my eyelids were stuck to each other due to some sticky substance and it was tough to take it out. Anyone faced that? Going to call MO to check on this.
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Well, yesterday my sister shaved my head for me! Emotional but feels like another step towards completion. I even went sans wig and scarf to church! May just keep it up! Thoughts? I don’t want to make others uncomfortable looking at my bald head!
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