Anyone starting chemotherapy in July?

HelenWNZ

Hi everyone - only yesterday I said two steps forward and one step back well in blimmen happened again today.

After no sleep at all last night because of the steroid meds we are at the hospital in plenty of time. No hurry here obviously... Blood pressure 121/76 all cool here.

Line in - port all checked and ready to go until nurse says I will just go and get your chemo drugs from pharmacy only to find they are in our Dunedin hospital (as we a regional hospital) and they wont be here until tomorrow. Talk about frustrating - had a good cry as I do and said this is bullshit.

Asked for sedation as now I'm on these steroids for a few more days and I get grumpy if I don't sleep. No blood pressure taken on way out would have blown the machine I expect. Human error as well as they are rushing me through as somewhere along the line I have been missed so a catch up happening.

So here I am needle in place in my port, still to save time tomorrow. Went for a walk which was to clear the head but did struggle being fatigued.

Back we go tomorrow. Poor partner has to take an extra day off work.

Sorry for my rant - have a great day

Helen

Lindzanne

OMG Helen what a pain!!!! That is B.S. I hope you can get some sleep and that it goes well tomorrow.

boricua_63

Hi everyone

I have been very busy this past couple of days and unable to get online.

I'll be back later to tell you all about my treatment and everything else.

Hugs to all

nye1980

Hi, all. I'm new to the boards and new to BC and have been looking for a place to "belong." I am 35 and mama to a four-year-old. I felt a lump in my right breast in the beginning of May and went to see a breast surgeon. Received a mammogram and ultrasound and both were unremarkable. The BS said I could come back in six months or get a biopsy. I'm not one to wait for things like this so requested a biopsy. Three days later my mother was diagnosed with esophageal cancer. So we got wrapped up in that and it took me a couple of weeks to get the biopsy. Even as the BS was doing it, he said it did not look like cancer. Except he was wrong. I was diagnosed June 1 with DCIS/IDC, I switched to a different BS and hospital (where I work) on June 8, and had a mastectomy of the right breast with no reconstruction on June 15. Nodes were involved so while in hospital I had CT scans of lungs and liver and a bone scan. Scans were clear, but those were some hard days.

My primary tumor is 2.5 cm and there was another small area of DCIS so glad my BS went with a mastectomy. Technically 4/28 nodes affected. ER+ and PR/HER2-. So TAC chemotherapy starts July 20. Radiation and hormone therapy to follow. I just had an echo a few days ago. As scared as I am to start chemo, I want to get started so I know what to expect. Trying to prepare for all possible side effects is just insane, but better prepared than not. (I also live in a country where I do have access to marijuana and so even that's sorted, just in case. I had hyperemesis during pregnancy and don't think I could survive being that sick again.)

ladylalatx

Well, today was my first TC. It was remarkably uneventful. Which was fabulous! Even my port that has been bothering me so much, cooperated and had not pain - truly a miracle. I had a great chemo class with my nurse practitioner, who was amazing. And they gave my sleeping pills and promised to help me stop taking them when it was time since I haven't slept more than a few hours since mid-May.

I am trying to stay ahead of any side effects, so I have my anti-nausea meds and have started on Claritin to ease the effects of Nuelasta. They also recommended these patches with ginger and B6, B12 and folic acid to assist with nausea and energy. I had a small neutral dinner and have been drinking water and doing mouth rinses. Hoping I have this under control. I will say that today was a huge relief as I feel like we are finally making a move to get this thing fixed!

HelenWNZ

Hi everyone

Here I am my first day. Went Ok I am pretty hyped up on the steroids - went to the supermarket and now home. Had reasonable night last night took some meds to help sleep which appeared to work although I did hear a lot going on in the night - in fact I was the only one who heard the phone go at 2.15am. My father in law had taken a fall so my partner had to race to his house and pick him up off the floor. Not a good start to the day.

Had a chat to the counsellor - not sure if I am ready for an in depth session but well see how things progress.

Had a boost yesterday which was a bit strange and talk about timing - had an email from another accounting firm in town asking me to give them a call regarding a vacancy they have. Here I am with cancer and now is the time for me to be wanted. My current work place have been too good to me to even consider it so I forwarded the email to my boss who replied pleeeeeeese talk to us before you do anything.

Take care Helen

DancingElizabeth

Hi Everyone,

I was posting in the June Chemo group...but...I think this one might be an even better fit for me because I started chemo - July 6th....

I am from CA and am up right now because I went to bed around 8:30 pm (something I never do!) and it is now 1:35 am (CA time!)

Anyway...I read the posts on here and can totally relate to what you all are feeling...especially with the scans. To me - that was ultimately the worst part...but got thru it with some anti-anxiety meds!

And, I was supposed to come back in for my Nuelasta shot - yesterday - however - somehow - forgot!!! Yup...I got a call from the infusion center asking me where I was. Unfortunately, I was scheduled to come in around the end of the day and they were about to close. They called my MO and scheduled me to come in tomorrow... This time I put the appointment time up on a big post-it note and taped it on my mirror in the bathroom!!

I look forward to getting to know each of you better - as we go thru this together!!

HelenWNZ

Hi Scared67 I started in the June group too but didn't start chemo until today so joined July group and am happier to be with others at the same stage of the journey as well.

I've totally got fed up of waiting and waiting for results but am trying not to let it grind me down. I've become more of a list writer than before because I keep forgetting everything and with three kids needed to keep on top of everything.

Hope your chemo went ok. Mine eventually did and now I'm waiting for any side effect that may come my way.

Take care

Helen

boricua_63

Hi everyone

Welcome new members. I have read through the post real quick but not able to remember the new members name. What a busy week for me.

I went to my oncologist on Tuesday, she gave me my OncoDx score which is 29, (pretty high) and we finally decided of my plan of treatment. I will be doing AC-T. AC, will be every two weeks for two months and T every week for three months. Plus the hormone therapy. After getting home, the same day I hadto go back for my chemo class. (I live 30 mins away) it was a one on one class, which it was good, lots of information. Then the same day I had a dental appointment plus I had to stay up until past 11pm to pick up my daughter from the bus station.

Wednesday I had a little break, only one appointment to my PT. But slept most of the day and it was so hot. After my 2:45p appointment, went home to leave again to go to the hospital to visit my partners mom, she had a minor surgery.

Yesterday, I went to my appointment with my employer to see if they clear me to return to work on monday( my plastic surgeon gave me restrictions for two weeks) and even though the supervisors said they will find something for me to do, I received a call from the Employee health stating they could not accommodate until the doctor clear me, what a mess. So right now I don't know if I go back on Monday or what. (They are never on the same page)

Then, I have the appointment for the MediPort at 3:30 in the afternoon, which it meant nothing to eat or drink after midnight and then, nothing to eat after 10am, so as you can imagine I was hungry and thirsty. I do have the port now, and I'm in so much pain. They did it through my neck.

Today is my first treatment at 8:30am. I have few things to bring, snacks , will bring a blanket, water, Biotene to have in case, etc. actually looking forward to start this and Kick the cancers ass. My daughter will be going with me, so at least I'll have someone to talk to.

I have all the medications prescribed to me. And tomorrow I go back to the cancer center for blood work or something (I don't remember) I have too much information in my head.

Well, I hope everyone have a good day. Ill try to come back here after I get home from my treatment.

Take care everyone

Hugs!!!

"We will beat this"""

xxyzed

Hi Boricua63. I am on the same dose dense AC as you and had my first dose today, except I'm in Australia so it's now my nighttime. I'm pleased to report it was very boring and non-eventful. They offered the option to suck on ice chips during the A component which I took so didn't notice any strange tastes that they warned me could happen. They also said neuropathy may be a side effect of the A drug so I figured it couldn't hurt to be holding onto a cup of ice during the treatment. It's now 8 hrs since commencement and nothing to report although I did take the 1st backup anti nausea at dinner time as I tend to be a vomiter/sea sick type person so at the first thought of any feeling in my stomach took it for just in case. I hope your day is equally boring and non-eventful and I hope my tonight and tomorrow continue to be the same

boricua_63

Hi xxyzed

I just got home from treatment and I feel fine, I had water ready for me to drink during the chemotherapy drug, I'm just a bit tired. But I didn't sleep good last night and I had the port put in at 3:30pm, so my tiredness is mostly from that.

Other wise, I'm good.

I'm going back tomorrow for the nulesta shot.

Hopefully I'll be able to sleep all night, now that I have so many drugs in me.

Hugs your way!

Ps, yes it was boring morning

And I hope they all stay the same wa

Lindzanne

Welcome new folks! Sounds like a busy week for everybody. Boricua you are on the same chemo drugs/schedule as I am too. I'm feeling a bit of a wuss because I was so much more down for the count than it sounds like you all were with your first doses this week. It's good to hear everyone feeling a bit more empowered by the movement forward, I know I felt that way too.

The ice chips also prevent mouth sores, so are a good thing to take when getting the doses of AC. I'm rinsing 4 X a day with saline and baking soda too. I have one tiny sore that isn't causing much trouble right now.

I still have a tiny bit of nausea. I went to work yesterday for the first time in a month! I worked a short day but came home and slept 10 hours. It was pretty tiring and I felt like my head was full of cotton but it felt good to be back!

Did any of you get the option to do your own Neulesta shots at home? I did and chose that route. I don't need to be at that damn hospital every day. It's way easier than I thought, preloaded needles that are so tiny you don't even feel them go in and I put it into my abdomen under my belly button where fortunately I have some good padding. Worth it to avoid the clinic which basically gives me PTSD every time I go.

It's good to hear from you all and hear things are going relatively well despite frustrations.

boricua_63

Hello

Got home about two hour ago from the treatment, I'm just tired but I thinkis mostly because the port was place at 4:00pm yesterday and of course they gave pain meds, so I was still drugged by the time I woke up and then more drugs this morning.

Other than that I feel good, I little funny on my stomach.

Tomorrow I have to go back to get the neulasta shot.

boricua_63

I took a long nap, feeling very tired, no nausea as of yet. And hope it stays like that. I bought Biotene and I been rinsing very often and drinking lots of water.

I'm going back to work on Monday, I'm hoping I don't feel too tired. I'll be working four hours a day for the first week, then the following week six hour a day, then to the full schedule

Hope everyone is doing good!

"We will beat this"

Ps, I set up my chemotherapy schedule for Friday's, so I'll have time to recover on the weekend.

nye1980

I'm glad to hear everyone seems to be doing well, though I'm still nervous to be doing TAC rather than AC+T. I do have a second opinion appointment on Tuesday so let's see what that MO thinks. (We've gotten second opinions all the way.) My MO said that I am young and he doesn't think I need to be coming back to the hospital so much so wants to get me done ASAP. Ironically, I work at the hospital.

Missjohn

Hi, I too am new here and am MEANT to start chemo later this month and I am crapping self as for me, all to do with this "journey" (loathe that word now!!) just seems to go from bad to worse...

Chemo wasn't on the table pre-mastectomy; just (ha) Tamoxifen.

Anyway, I think all of you are truly amazing!!!! Well beyond amazing and I hope, if this path is for me that I can offer you some support when needed sans the signs of the nervous breakdown that I am currently in the midst off...

Thank you so much for being here and being so open, kindand compassionate!!

boricua_63

Hello everyone

Second day after my first treatment and I feel like crap, I have the runnings and very dizzie, got up about three times last night, so lack of sleep. In a bad mood and everything my partner or my daughter say to me get me going. Grrr, I hate that feeling.

The port was placed starting on my neck and going to my collar bone and I don't like it. I am going back to work on Monday and I don't know what to do to cover that scar. I work at a warehouse, so is hot and I can't wear a scarf.

Too many mix emotions here.

Sorry, I have to vent.

xxyzed

I'm sorry you're struggling boricua63. I am on day 2 of my first treatment as well and still feel fine. I know that this is unlikely to continue but try not to think too far ahead and only concern myself with getting through the night, or the morning, or the afternoon. I know in myself that these problems are only temporary and as hard as it is at the time it will pass or can be minimised with medication but I need to let my doctors know what those problems are and what I have tried to do to fix them. I see this first cycle as a guide to how we will probably go in future cycles and will try to schedule a life around it.

I've never seen a neck port so can't imagine what you are trying to cover. I have to wear a men's style compression vest and Lymphadema sleeve and gauntlet so have had to start wearing men's clothes to cover them. Fortunately for me it is winter here so not too much of an imposition so far. I'm hoping I can drop the best come summer and just have to put up with the sleeve and glove so I can wear smaller clothes. My boys tease me and tell me I am now a boy as I have no boobs, short hair and wear men's clothes. Straight from the mouths of babes

boricua_63

Hi xxyzed

I just woke up from a 3 hrs nap. I feel fine, not many side effects, is just the no sleeping. Plus I didn't have enough time to recover from the minor surgery from the MediPort, so I think is a mix of having that done and the first treatment very close together.

I'm hoping my sleep gets better. It makes a big difference when you sleep through the night.

Hope you are doing good!!

Hugs!!

boricua_63

Hello ladies

Hope everyone is doing good. I have a question, has anyone has had a red, flush hot face after first chemotherapy treatments and if so, how did you get relief for it? (No fever involved)

Thanks a bunch

Hugs to all!!

Lindzanne

boricua, the day of chemo I came home and had a flushed chest and shoulders. My face felt flushed too but I had no fever. It went away quickly enough that we didn't call anyone, I should probably ask about it at the next appointment. It was kind of like a light sunburn. I'm sorry you were doing poorly, but glad a nap refreshed you I can't imagine working in a warehouse at a time like this, you are one brave, strong woman. My port is still a little irritated a week and a half out, it's rough having it put in and then using it right away.

It seems like the steroids are really bugging folks, I made sure I took mine as soon as I woke up and did ok at night BUT I have an anti anxiety med AND sleeping pills, lol, and I have zero compunction about needing them both at once.

I worked the last few days, yesterday felt much stronger but with an underlying fatigue. That said feeling somewhat normal I've had a relish to get things done each the last few days and have to be careful not to push it too hard. I think the Neulesta shots are finally catching up with me. I don't have the terrible pain that Christina had, but do have bone pain and really achy joints. We ran errands and did some housework today and I was so creaky and slow picking myself up and down whilet cleaning and doing laundry. Felt so good to have some control over my domain though. And I REALLY want to eat. After 6 days of eating bland, tiny portions I just want to stuff myself with my appetite and taste buds back. So trying to satisfy myself with healthy tasty meals. The first day I felt like eating my friend brought us Mexican food for dinner and I ate a huge burrito like it was the last one I'll ever see, haha!

I'm trying to enjoy my days until this Thursday when it starts all over again. I don't know if I feel better or worse knowing what to expect. I'm bummed thinking about the symptoms, but also a bit more prepared. Sometimes I think I do better flying by the seat of my pants but ultimately preparation is probably best mentally.

Missjohn we have all been where you are and probably all will be again! Glad you found us.

Hang in there. You all give me strength and courage. I would feel very lonely withough this thread.

Lindzanne

oh, and boricua, I did put an ice pack on my chest when I felt flushed. It also helped center me and calm my nausea and just relax, like a cool breeze on a hot day.

boricua_63

Lindzane

Thank you for the information. I really have not have that much nausea and the diarrhea has pretty much gone away, drinking lots of fluids and I cook a homemade chicken soup, which it hit the spot.

I just wish I could have a full night of sleep. That makes a big difference.

I'm glad you are doing things and moving around.

And yes, the warehouses is hard work, but I really enjoy working there. Plus I will be happy to get back, since I have been out of work for six weeks. I just feel funny with the incision I have on my neck and I was told it was okay not to cover that, even though I explained to the nurse is a dirty place and I don't want an infection. ( but I will cover that really loose)

Hope everyone else is doing good and keep fighting the big fight.

Hugs to all!!!

💕💕

boricua_63

And welcome all of the new members to our group.

We will support each other and beat this.

One thing I found helpful when I first got diagnosed was, starting a journal, it has allowed me to write down how I feel and every step from this journey.

Hugs to all!!!

DancingElizabeth

Hi All,

Welcome new members! Sorry you are stuck in the same situation as us....but this is a very nice and supportive group and glad you found us....

Lindzanne - Good for you on doing your own injections! I hope to learn myself....as the place I go to is far from home and having to go up there is painful......

Boricua63 - Sorry you've had a tough time with sleep...but glad you got a good nap!

Helen - I'm glad we're over here from the June group...

As for me, tomorrow I go to get my hair buzzed....my hairdresser is kind enough to open the shop on a Sunday morning....so I can do this in private..... I've never really liked my hair...but am sad to see it go....

And....somehow the folks (and, the RN overlooked this) at the infusion center messed up my infusion schedule.

I found out late on Friday. So...the whole schedule has to be rescheduled...(well the infusions got rescheduled but everything else that revolves around it needs to be rescheduled). And, the infusions are now at a time that is difficult for me...

And, the nurse (who screwed up on this) STILL eeds to follow-up with me...because now, all,the pre-chemo appointments have to be rescheduled....

It is a mess and really upsets me because my life revolves around the chemo schedule... I have a 9 yr old daughter - who needs me to pick her up from camp and get her to her activities. It's not just that - they have made other mistakes....I'm ready to switch to another medical center......

boricua_63

Scared67

I am so sorry about all of the mixed up and you have the right to be upset. Especially with young daughter. Stand up and talk to your onco, and if not, I'll probably be doing what you planning to do, go to another cancer center.

When I got my schedule I told them when I want the treatment and the day of the week. (I told them I need to do them around my work schedule and my home).

When I went today for my neulasta shot, she didn't take vital signs, I logged on to view my chart and saw the lady put some numbers, I will be calling Monday and complain about that.

Is sad that some people don't focus on important things and in this case your treatment.

Good luck to you in everything!!

Hugs

DancingElizabeth

Thanks Boricua63....that's weird how they didn't take vitals but still entered numbers?? Good for you for catching that!!

Yeah...I just can't believe how unprofessional they were about this...the RN did NOT even apologize..

boricua_63

Scared67

It sucks when people don't apologize and knowing this is your treatment and your recovery depends on that.

Hope you are able to get better care. And able to do the schedule the way you want, which it should be your choice not theirs.

Hugs your way!! Keep on fighting!

DancingElizabeth

Thanks Boricua63....this has not been an easy day and I really appreciate the hugs!!!!!

HelenWNZ

Hi everyone

Just thought I would pop in and tell you all I have survived day one after chemo and day two is ticking along quiet nicely.

I just wonder though if it is due to me being on the steroids for longer because of my mix up at the hospital and now having two days to wean off that I haven't hit any major bumps in the road to speak of.

Yesterday I woke up feeling a bit dizzy but after food felt fine as I have not lost my appetite. I did have a flushed face and also around my arms and shoulders and chest but as I had no temperature I felt everything was probably part of the process. After a drink of water yesterday I felt a little sick so I quickly took a anti nauseous med and felt fine didn't need any more for the rest of the day. I did get a bit achy and puffy in the hands and had a very lazy afternoon.

So that's it, not much to report. I have got a bit zealous with the hand washing and flushing the loo lid down twice and all that but I guess it is what it is.

Had a bit of a pot luck tea around home as all my family are heading away on a family reunion to Australia that was my idea and I organised and am not going to which so sucks........I said to my family we are having the easiest meal ever wraps - chucked everything in the middle of the table and make your own it was a success.

Had a sleeping tablet before I went to bed - took a whole one this time as half only got me to 2am the night before and a full one got me sleeping until 6.30am. Its my last one now until next round of steroids though. As my port went in when I had my op 31 May I'm all settled in that area and I am just so happy to be able to sleep on any side I like now which has made night times easier. I just hated sleeping on my back.

Today I feel pretty much the same - its winter here but we have a frost this morning and the sun is out so I went for a 15 min walk to clear the air.

One wee thing that might be coming on is the inside of my mouth is a bit sore so I am being very mindful of mouth washing too. My daughter has painted my nails a dark colour as we read somewhere about it.

Oh yes drank so much yesterday - tried to get to 3 litres but just couldn't 2750. I'm measuring!

Take care - We all appear to be coping really well.