Starting Chemo in September 2017

PauletteK

Jeng- you can read our chemo treatment on public, you can do the same if you setup your profile and click on public. I did my AC now I’m on taxol. I tried to cutback a little bit on sweet, since I’m on taxol, my taste buds loves sweet. I need to watch my sugar.

jenglutenfree

PauletteK - thanks. I think I updated my profile. I am not eating any sugar other than green apple on my juice. The honey seems to be the on,y thing that helps my mouth so I figure that is my sugar allotment for now.

Are your taxol symptoms different than your AC ones were

PauletteK

jeng - I think taxol is easier than AC, I do weekly taxol so it is the mild one. Today is my bad day from taxol I couldn’t eat lost my appetite, hope my appetite will come back tomorrow. Other SE will be some muscles pains and watch for neuropathy which is scary.

jenglutenfree

PauletteK-Hope your appetite comes back! Thanks for the info.

Milkweed93

Regarding acupuncture-I’ve been going in the fourth day after treatment. My lowest blood counts come a few days later. As others have said, the needles are so small and I barely feel them - well some may pinch a little. I t helps with my anxiety and sleep. I would go more but I’m paying cash. I didn’t even thing to get a referral from my MO! I’ll see if I can do that from now on.

OCDAmy

I mentioned last week that I took a fall in the parking lot and got banged up. I had some scrapes on my feet and hands. They looked like they were healing on Friday when I got my chemo so we went ahead. Now they are not looking good. They are red all around and just not healing well. I called the nurse and she said because I am still taking the broad-spectrum antibiotic for the UTI I should be OK and to come in if I notice red streaking lines of infection. I guess because I was hospitalized for an infection I am super paranoid now and a nervous wreck what will happen when my counts are down in a few days. I have been taking care of them by cleaning and putting antibiotic cream on them but they just look angry. One more thing to add to my list of concerns. Oh and I got thrush again. Be careful everyone with scrapes and cuts.

toughcookie_21

Amy, I burnt my arm on the steam from a tea kettle 3 days after my first infusion. It is still not completely healed and it wasn't a bad burn. Last week, I tripped while running up the stairs and I got a brush burn on the the other forearm. It turned very red and hasn't really healed either. I usually heal really quickly. I had both arms checked out by the MO office and they said the same- keep an eye on them and make sure there are no lines coming out from them. The burn actually did have a line coming from it once early on but I started putting the antibiotic cream they gave me after the mastectomy on it. We do need to be extra careful! I hope yours heals soon.

OCDAmy

Toughcookie, thank you! I feel better knowing it is just not me. I am feeling so down today and really ready for this crap to be over. I too heal pretty quickly and this is scary to be a week later and not healed. I also had to spend 30 minutes on the phone trying to get the stupid insurance company to cover the wig that my policy says it covers. They were telling me it was "out of network" and so I asked what local wig shop is in-network? Um, none. They finally agreed to send me a check for it.

Brightness456

OCDAmy, you're definitely not alone. I'm clumsier than ever and feel blue more than ever too. It's hard feeling physically ill when you're used to feeling healthy. I look in the mirror and don't even look like me anymore. I keep thinking this is not who I am. I am a happy, healthy and vibrant woman, not this sad, sickly tired person. I can't wait for chemo to be over. Every day I wonder if I should just stop so I can feel healthy again.

hopebringscourage

Man brightness reading your post is exactly how I feel today!! DITTO

I have shed so many tears I'm nauseated🤤 and my chemo last Friday left me with little to complain about compared to last time.

Does anyone have foul smelling urine after chemo?

Hang in there the rainbow awaits ALL of us!

toughcookie_21

You all are not alone. I feel like crap too. I am used to being healthy and strong. But now I look and feel sickly, I'm clumsy and tired all the time. I have no attention span and I get overwhelmed having to complete simple tasks. I'd like to go to the gym, but I can't do that because I'm so afraid of getting sick and gyms are dirty and did I mention I have no motivation. I don't go in the office because they told me I can work from home, which I thought was going to be great, but instead I feel isolated and lonely. Nothing tastes right so I don't even enjoy eating. I've been avoiding social situations because I hate the pitying looks from people and having them ask how I'm feeling. I can't wait for treatment to be over, but I wonder if I'll have a dark cloud hanging over me all the time with worrying about recurrence.

Sorry for the rant. I'm also usually a very positive person. Cancer sucks.

PauletteK

Ladies, I’m with you, I became so clumsy that I can’t even screw up my water bottle. I hate to look at the mirror because that person in the mirror is not the person I remember. I used to smile and laugh all the time, now I worried about any little things. I hate think about eating because nothing taste good. I even told my MO I couldn’t wait till this over with. My hubby loves me so much and so good to me, I can’t leavd him behind yet.

I’m sorry, today actually is my good day, 😀 should smile and thanks God to provide me such a nice day and I can walk and eat.

Amy and tough, slow down for few more weeks or months, we will get to the end of the rainbow soon.

jenglutenfree

mkn86,hopefulac, travelgirl: I'm going for round 2 of 8 tomorrow. Then surgery. Wishing you all the best. I'm hoping round 2 isn't much worse than the first cycle. I shaved my head today and am happy that is over.

My SE weren't too bad. Exhaustion, some mouth sores. Hoping tomorrow will be about the same. I have a big event on the 21st and really want to feel ok. It's my sons Bar Mitzvah and I'd like to be able to enjoy it. I'm crossing my fingers.

Xoxo. Jen

jenglutenfree

Henrietta, I tried to write checks and it took me 4 hours to write 12 checks. My brain fog is so bad that my employees have asked me to take a break and let them run things. I'm taking advantage of it for now and working on the das when I can focus for a few hours. Hang in there. I do have great moments of clarity and get a ton of work done. Je

jenglutenfree

Is anyone else juicing or eating anything special, like bonebroth or maitake mushrooms? I'm spending a ton of time eating these things and wondering if I'm the only one?

PauletteK

Jeng - I hope you feel good on 21st so you can enjoy a great day with your son. I give a lot of credit for people who works and doing chemo at the same time. It’s so hard to focus.

Kiwi-in-Thailand

Hi Amy... on the cuts and stuff... I’ve had a number of little nicks that I cover in antibiotic cream, some fungal bumps between my breast which I cover in anti-fungal cream, a herpes eruption on my lip - anti viral cream - a rash on my face - betnovate... none of them heal quickly, one of them is red still after 2 months.im completely paranoid but to be honest whilst they’re not healing at any speed, they’re not getting worse and a few of them have gone away...

I’m now on Day 7 post round 2... my SEs have been almost completely different (and better) from round 1 - has anyone else found this? I crave some sort of predictability... taste hasn’t gone completely this time, bone pain less, more nausea than last time but less of the big D— don’t know whether there were less steroids or something or whether it’s a result of me eating better and exercising more or all of it??? Oh and I put on 9 lbs in the first two days and then lost 11 over the next four... must be the steroids I guess but I’ve no clue real

Mojojennijo

I had ac #2 at 12 days into my cycle cause I needed to switch over to Monday's, so lol that was Monday (I feel like an air head today).

I started olanzapine this round on the day before treatment instead of the day after like last time and did not get so violently ill. I have not felt well but it's been manageable. Lots of sleeping. I'll tell you, that is a good nausea Med!

I find myself in a pickle though. My hair is falling out fast. Started on what would have been day 14 but because I moved my treatment it was day 2 of second. ANywho my scalp hurts so bad. I don't want to shave my head because I am taking my 14 year old to a concert tonight and want to look as normal as possible. But wanted to know, does shaving help with that scalp pain? It is a stinging sensation. I may just buzz it and throw on a scarf if that will help.

I apologize if this is hard to follow. I am super foggy!

jenglutenfree

mojojen: I shaved mine yesterday and it seems to feel better. Not totally but a lot better. My head still has a lot of stubble but at least I'm not losing clumps and the buzzing is less. Good luck to you! jengf

jenglutenfree

Does anyone know if they will let you have chemo if you have strep or thrush? I think I have one or the other and am supposed to go for round 2 today. I'm hoping they can diagnose my throat, give me something for it and do the chemo all at once.

bjquilter

snazzyiron, I had my surgery 1Sep. I haven't had an apt. With MO yet. I don't no my exact diagnosis but biopsy shows HRT+ and Her2+. Both margins and lymph nodes were clear. The waiting is hard. I'm still in denial that I'll need chemo but I think it is likely do to triple positive diagnoses. All the post on these borders help me feel less isolated. Thank you all.

PauletteK

Jeng - not sure I know people usually found out thrush few days before, are you doing AC now? Talk to your nurse, send you some good vibes and good wishes.

Bj - yes waiting is hard, it has been good six weeks after surgery why can’t you make an appointment with your MO? I think I saw my MO three weeks after my surgery and he pushed to get my treatment going . So call your MO schedule your appointment.

jenglutenfree

PaulletteK - yes. I'm doing AC. They just called and said I can come in and they'll look at my throat and then hopefully I'll still have my session. I'm hopeful since i don't have a fever. Enjoy your day! I'll be at chemo and then napping the rest of the day. I'm so appreciative that my kids are old enough to get themselves settled before and after school so I can get the sleep I need. xoxo Jen

PauletteK

Jeng - 🙏🙏🙏🙏 hope you have uneventful infusion day!! Tomorrow is my infusion day.

jenglutenfree

Good luck tomorrow pauletteK:) Thinking of you...jen

MzPriss

Amy: My cat sometimes grabs me and what never left a mark before is now scratches with pink edges. I'm taking very good care of the areas, but it's so odd that it never left a mark before.

Hope: Yes, my urine is gross smelling, especially right after chemo. I seem to have a bionic sniffer now that I have no nose hairs so it's almost overpowering!

Mojo: I was told it hurts as the hair follicles "die". Mine hurt too. It was less after finally buzzing it, but where the stubble is still hanging on it still aches. I cut it to about an inch the first "buzz". It as actually cute with a head band. Maybe try that before going all the way down.

Paulette, my next infusion is tomorrow too. Let's do this! I'll be half way there.

I'm still not back to work. I'm so fuzzy headed and sometimes confused. I've only had 2 what I would call "good" days this cycle. I had high hopes of working through this with little time off and I have been off since 9/13. I work crazy hours, sometimes 60 hours a week and a lot of night time meetings, there is just no way I could do that right now. I am still a go for my off-road/camping trip Saturday. The way things are playing out, it should still be a good day. This is my passion, and unless something drastic changes, I'm going. (I bring my own bathroom....and my group knows my story, so I will be well cared for if I need it.) I go with a group of people, and my BFF is my co-pilot this trip. I'm in good hands and we won't be so far out that I can't get help or head home if I need to. The trail starts about 2 hours from my house. Cancer has taken so much and I just refuse to let it steal these things from me if I can help it.

PauletteK

Priss- have a great camping trip and be careful.

I buzzed my hair after AC 2 so I have been bald since mid August. I missed my eyebrows more than my hair, hopefully I will see them back soon. 🙁🙁🙁

Ladies, you all have a good days, Will get my infusion #5 tomorrow, please pray for me. Thanks!

mkn86

I'm on my way to the hospital to get a blood test today. based on that MO will give go signal to surgeon for port installation tomorrow.

MO wanted 5-7 days healing time prior to my next chemo. he still hasn't finalized if he's starting me on weekly taxol with carboplatin early because of the red patch on my skin... but it looks like he will start taxol even though i've only done 2 out of 4 EC doses.

I just keep thinking the bright side of this is my chemo will finish earlier. but it's also scary becauset feels like i'm falling through the cracks of standard treatment for TNBC. I haven't seen TNBC people in the threads who switched meds before finishing their EC dose

Prayers and strength for everyone who'll have another round in the coming days.

Meg101

Hi Everyone - Just checking in to see how everyone is doing. It sounds like you are all hanging in there. I'm on day 4 after round #2. So far the SEs are the same as round #1, mild & manageable. Yes, the urine smells, insurance companies suck, and not having hair is weird. My biggest concern is my MO wants me to have a PET scan for what appears to be a mass on my ovary or intestine which showed up on my CT scan. I'm still letting that sink in.

OCDAmy

Priss, have fun camping. I'm not much of an outdoorsy gal. Roughing it for me is the Holiday Inn. I'm glad you are not letting cancer stop you from what you enjoy.

Meg (that is my daughter's name). My CT scan showed several things that ended up being nothing. Hopefully that will be the case with you too.

My scalp never hurt. I buzzed my hair but after 3 treatments I still have some hair left. I'm surprised.

Best to all!