Anyone starting chemotherapy in July?

DancingElizabeth

Boricua63...I hear you about the fatigue...I get motivated to do something but then want to lay down and do nothing...however I'm getting really bored and want to do something - at the same time. Also, the same about the tissue expanders - I'm tired of feeling like I am wearing a tight bra all of the time.....sorry to hear your are giving you issues as well....

Well...it's Day 11 for me. And, I think I noticed my first hair strand to come out. Glad I got my hair buzzed down to one inch - last week. But, still not looking forward to seeing what's left all fall out and be completely bald....

I dreamed last night, that I went somewhere with my DD and saw a lot of people that I know but everyone was staring at me - then I realized that I forgot to put on my wig. I woke up thinking this really happened but then realized it was just a dream.

I think I had this dream because haven't told many people that I have BC. VERY few people besides my family know...because I can't stand the look of pity and I am kind-of introverted already...and don't want attention draw not to me...

Wish we could just have cancer and not have to be hairless at the same time...

Lindzanne

Round 2, Day 3. I am more tired and nauseous than last time, but the extra steroids I got really help, although they do get me wound up. So I really need to make sure they don't trick me into using energy I don't really have. Oddly enough my appetite is normal and decent but sticking to bland stuff!

Boricua I talked to the onco covering for mine while she's on vacation about the red flush I had too. He wasn't worried and said that if I was in any pain or fever he would be, but that things like what I described do come up. It happened again yesterday, face and chest--I actually believe it was a side effect of the steroids making me all hopped up and pushing myself too hard, but I'm no doctor obviously! It went away when I laid back down and rested.

I'm just so tired, but not in low spirits. I do feel like I have a routine down now and don't feel quite as depressed as I did the other day. My husband told me today I'd been "full of piss and vinegar" the last few days and that I was laid up and sick but still fighting and being my normal self---I guess he's right or at least I'm putting on a good show!

I haven't lost any hair yet. I imagine any day now. I have no idea how I'll feel about it. Each step of my hair getting shorter and shorter I cried and then ended up feeling ok and with an odd feeling of freedom, but being bald is a whole new territory. Everyone in my life knows, but going out in the world bald sounds scary. I don't want the pitying looks.

Hugs to all of you as we slog through it. We are getting through it. We can do this.

nye1980

Chemo starts tomorrow (hopefully as insurance is being its usual difficult self) and I am nervous. I'll be staying with my brother for a couple of days after as I have a wild four-year-old and a full house and don't imagine I'll be able to get any peace and quiet. I also really want to deal with SE's privately and get a handle on it. Hoping I'll feel well enough to be home over the weekend. Finding it difficult to think about being away from my girl. Until my mastectomy, where I was in hospital for three nights, I had never been away from her more than two nights in her whole life. (And those two nights not until she was four.) So I am feeling generally scared and emotional and wishing back my normal life, before this whole thing.

Daczahow

Well my 2nd round has been much harder than the 1st but from reading all of the comments that seems to be a common theme. My hair started to go over the weekend I think that wasday 18 not too bad I guess! I decided to make the shaving a private thing this time just me and the clippers in the bathroom. Last time I made it a big event everyone helped me ... But I didn't want all the fuss this time. Oddly enough when I emerged from the bathroom bald my kids barely even noticed !!! Sadly they have been there done this before!! They are pros! I have ended up dehydrated twice now just can't seem to keep enough fluids in me! Just went to the infusion center again today to get a bag of fluids...what a difference it makes! Feel much better tonight.

Sending hugs to all

Thanks for listening

Christina

glitterinmyveins

Hi everyone. Had my first chemo treatment yesterday. Upset before leaving and on the way there but surprisingly calm as it got closer to infusion time. Overall, very uneventful just extremely tired from the Benedryl they gave me. It was nice to sleep for awhile. I felt normal when I came home. This morning when I woke up, I felt a little nauseous and took the meds first thing along with tea and crackers to keep from getting sick.

Hope everyone is doing ok today. Thanks for being here to talk to.

stephincanada

Just wanted to say hello and add myself to this thread. I started chemo on July 8 and have found it remarkably tolerable. My main side effect has been fatigue, and that is getting better with time. I hated being on the steroids the first few days as they gave me insomnia and made me a bit agitated (too much energy). Other than that, all is good so far. Best wishes to all

Cwhitney

StephInCanada, it sounds like you and I have the same side effects. It's day 10 after my first treatment and the only SE I have is fatigue. I find that if I take a walk or bike ride, the fatigue goes away. It does usually hits me late afternoon. Yesterday I had the case of yuck mouth where everything tasted nasty. But it's not keeping me from eating. My next one is on 8/1 and I figure my hair will start going then. I am dreading this since I already feel so unattractive with my reconstruction and face breaking out from the steroids. Ladies, we will get through this. I have met some amazing women 2-3 years out from chemo who are healthy, active and living life to its fullest.

boricua_63

Hello ladies, I hope everyone is doing good.

My fatigue is almost gone, maybe is bc I work at a warehouse and I walk all day, and just when I'm feeling a bit better, I have my second treatment this Friday.

My oncologist also ordered a ct scan of just my abdomen bc they saw an 11 x 8 mm low attenuation right addrenal lesion, and she want to make sure whatever it is, is not due to this BC.

So, more tests for me.

I haven't lost my hair as of yet, today is day number 11 after my first treatment.

Other than that, I feel good.

Hang in there, we got this.

Hugs from Freeport Maine. 💕

Lindzanne

Welcome StepheninCanada, any other new folks I missed.

Christina, I'm with you, much tougher this second round. Mainly the fatigue. I cried yesterday from fatigue. I got plenty of sleep so couldn't sleep but had such full body fatigue I couldnt do anything to keep my brain occupied and just got depressed. I'm sorry you've had such issues with hydration! Your kids sound like such troopers.

I think I'm turning a corner today, it is day 6 which last time is when I did so and have been up and around a bit. We'llsee if I make it to work, they're very forgiving about me resting there but today I'm still needing a break every little thing I do.

thankso for listening. I'm still trying to focus on gratitude and determination but I've been down this round emotionally.

Hope everyone is doing as good as they can today. Let's all be gentle with ourselves.

Lindsay

ladylalatx

Hi all! Sounds like most everyone is getting by. I haven't posted much because I didn't want to sound too whiney, but I have had a rough time. After diahrea since chemo, they finally figured out I have c diff. I had to go in for fluids every day and yesterday my dr finally put me in the hospital for fluids. Now my port is clogged. I am beyond exhausted and have considered stopping treatment completely, but a lively nurse angel talked with me and got me back in the right frame of mind. Hoping for a break soon

Lindzanne

personally I think this should be a space where we can come whine if we need to. Who else knows what we're going through better than each other? We know we're all doing our best and fighting but if we can't come here on our bad days where can we go?

We all deserve support whether we're feeling great or feeling ready to just give it all up. I hope we can all nurture that and feel safe doing that.

Sorry you are having such a rough time ladylalatx. That sounds awful and I can imagine you feeling ready to give up but I'm glad you got that pep talk. There really are some nurse angels out there. I hope you improve and feel stronger by the day. Keeping you in my thoughts.

HelenWNZ

Hi everyone, I've just been having a wee catch up. Unfortunately I have just got home from 5 nights in hospital. Managed the get a fever on Friday topped with the dreaded D I'd had for a few days was in a pretty bad way. Spent 3 days on iv fluids as well as a heart monitor. Antibiotics pumped into me for 5 days. Neutropenia trust me! while in hospital they also found out I had very low potassium levels.

Didn't get round to the big shave but will do soon not that I'm losing it yet. Have found the skin on my face is all peeling. Thrush treatment for mouth working and actually have a bit of an appetite so think on day 12 I have turned a corner as the aches and pains have gone too.

I dread round two to be honest although I think there will be some tweaking in my dosage.

Take care

Helen

Lindzanne

Oh Helen what an ordeal and Im so glad you're out of the hospital and hopefully on the mend. My goodness. I certainly hope they tweak everything so you wont go through that again. Sending many healing thoughts your way.

boricua_63

Hello

Helen, I'm sorry you went through that, I hope your doctors are able to change and or adjust you treatment.

Ladylalatx, it's okay to whine, we are here to listen and help as much as we can. If we don't do it here, then where are we going to go to be able to express how we feel, the pains, aches etc.

Hang in there everyone.

Hugs💕💕

nye1980

I had my first TAC yesterday and felt fatigued immediately after. Still managed a long walk after. Lots of nausea and vomiting/heaving last night, though. Today just exhausted. Been sleeping all day. Food tastes funny and haven't wanted water at all, but doing my best. I go in for my GCSF shot tomorrow.

Slkb

It has been 1 week since my first treatment of TC. It feels like a week long hangover. I have a funny taste in my mouth,nausea, and craving greasy junk food. Does diet play apart in minimizing SE? My nurse said during chemo don't worry about what you eat. I'm worried about weight gain. I know this should be the least of my worries but it is hard enough losing your breasts,hair and now weight gain.

Cwhitney

Slkb, I did not have a lot of side effects my first go around. I am wondering if it was because I drank a TON of water during and after the infusion. I also don't agree with eat whatever you want. I stuck with lots of protein shakes mixed in with fruits and veggies and lots of dried fruit and nuts, chicken, salmon, yogurt. I stayed away from anything fried, spicy or sugary. The first week I was a little tired and my stomach was a little queasy so I ate small meals. Two weeks out I feel completely normal. I also make sure I go for a long walk everyday. It helps with the fatigue. I am hoping the second go around is the same. Hang in there!!!!

Lindzanne

A week long hang over is the perfect description. I think so many people struggle with feeling like anything that they say eat whatever you want/can just to get food in you. I have heard chemo weight gain is usually due to water retention. Last infusion I had the same craving for bad foods and I do this time as well. I was so relieved to have an appetite I did eat somewhat poorly and quite a bit of it and didn't feel great! This time around I got much more prepared with food in the house for when my appetite came back, but the day I had that starving feeling come back (because it's such a different feeling to actually WANT food than to just need to eat it) I did indulge in a big club sandwich with fries! I think I'm going to just let myself have these "treats" to celebrate my appetite and then keep eating very healthy.

When I'm right in the throes of the SES very small simple meals seem to help. I've been making and getting some help making broths with some veggies, or miso and seaweed, put in small canning jars and can grab and get something on my stomach. For some reason I have wanted a plain baked potato with just a little butter the days I'm feeling the worst. Starchy but simple and without any of the fixings probably a lot better for you. Greek yogurt, cottage cheese with what fruits I can eat, etc. These are the types of foods that have been getting me through the bad days. Steamed broccoli has been a big one too.

I agree with the lots of water. I have an app on my phone called Plant Nanny and it helps you keep track of how much you should drink in a day. It's all these cute plants you grow as you drink and they die if you don't water them so you feel guilty, lol. It actually really helps me. My chemo nurses really push water during my appointments understandably and I showed them the app last time and they were all downloading it themselves!

Ugh. So many little things to deal with. I'm not sure why I just wrote this novel about everything I've been eating but food and weight gain and how to navigate health and cravings has really been on my mind too. Thanks for listening.

Hang in there everyone. I think of this whole group daily and send as much positive energy as possible to all of you.

Lindsay

HelenWNZ

morning everyone from someone who feels human again. After my first dose last week I was really good and drank 2 - 3 litres of water then as my taste buds went it was such a struggle as everything tasted so gross. I found ice blocks helped as at least they were liquid. As far as food went I was losing too much weight so was told to eat little but often of what I felt like. Luckily for me I went looking for buttery mashed potato and chicken. Porridge too was yum and omelettes. Home now from hospital food I ate my way though yesterday so have to rein things in as I am over weight and do need to lose more the right way.

Take care

Helen

boricua_63

Hello everyone

I was told to eat small meals all through out the day. I snack and eat all day anyway. But I'm putting a lot of pounds.

I went to see my Plastic surgeon today, and he had to put me on antibiotics due to an infection on the reconstruction site. If it continues he will have to remove the tissue expander and delay the reconstruction until after I finish with chemo. (Which is okay with me, since this tissue expander has bothered me since the beginning) (this weekend I had discharge from it for two day and then swelling and it felt really hot)

So, tomorrow's second treatment has been postponed until the following Friday. So now that will take to end of November.

Hugs to everyone

💕

Cwhitney

They had to take one of my expanders out two weeks after my surgery. Trust me, I was happy to get it out. It was so painful. I too have to wait until after chemo for them to try again.

boricua_63

If he need to take it out, by all means. I don't want to have to worry about this and the pain that is causing me, I want to concentrate on my chemotherapy treatment. ( this is two months after my surgery, and I just got the infection) it might have something to do with the chemo, since I been getting delay side effects) at least that's what the PS thinks it is from. Right now it feels swelling. I will see him again on Monday. And that day we will decide.

My fatigue is back, grrr, I hate feeling tired all the time and all I want to do is sleep.

Plus, I was looking at my chart online and it shows under my conditions "Malignant neoplasm of cervix uteri" that is something I didn't know, so I called my doctors office and the nurse said she is going to check on that, I told her, that is something that should be addressed to me if is true. So now I wait for the call. When is not one thing is another one. I'm about to go someplace else for my treatments. I like my oncologist and my nurses, but the people that answer the phones are rude. And I don't think I should put up with that.

Anyway, I hope everyone is doing good.

Hugs💕

DancingElizabeth

Hi All,

Welcome new members! It's great to have you here but I'm sorry that you are having to go thru this....

Boricua63 - sorry to hear about your expanders...glad you have an appointment with your PS on Monday (I think you will feel much better getting them out...I haven't been too happy with mine - either - mainly because I'm not too happy with how they look and feel EXTREMELY full - all the time. Sorry about your experience reading your chart. I had a similar experience - when I was reading my pathology report on my mastectomies. It said something about a positive node in the the lung area. I freaked out when I read this and was wondering WHY my BS didn't mention it to me. I called the office right away and spoke with my BS. He told me this was a typo and it was referring to the sentinel lymph node, instead. (Which, I already knew about, but was glad it wasn't an additional problem). They need to realize that *we* read this stuff.... I hope yours turns to be nothing - as well.

Helen - so sorry you had to go through that....(((((Hugs)))))) but glad you're home from the hospital and feeling better.

I can relate to what everyone is saying about craving fried food and having a huge appetite during the second week....food just tasted SO better - in fact better than BEFORE I started chemo. But, doing the best I can to stay on track and eat healthy...

So....today I went in for my second infusion. I find just getting ready and going there - to be very depressing - but am in better spirits - when it's done. So, I'm now 5 and 1/2 hours post infusion and feeling tired and like the nausea is starting to kick in....I imagine I will feel pretty yucky this weekend and really plan on doing as little as possible.

Take Care Everyone....

xxyzed

Boricua63 - unbelievable. You're online chart says you have cervical cancer and no one thought that was something that should be mentioned to you. Hopefully it's a mistake. I can't think what test they would have done that would show that without you knowing about it. Please keep us updated. My mastectomy was without reconstruction and it has certainly been a pretty easy experience. It seems it's the reconstruction that causes so many people issues.

HelenWNZ - you poor thing. You really copped a battering with your 1st round. Let's hope it's all good from here on in.

Lindzanne - that app sounds great. I put alarms in my phone to remind me to take medications so if I'm too dopey to remember the phone tells me what I am supposed to take.

The week after chemo I just ate little bits frequently and didn't worry too much if it was good or bad for me. I thought for sure I would have put on weight but I think I've finished up a few kilos down on my starting weight. I'll find out for sure at weigh in for the next chemo

Well I'm 15 days after my 1st AC and have been pretty much back to normal for quite a while now. I'm counting down the days until I lose all my hair. My next cycle is next Thursday when I get back on the merry go round again. I've got my fingers crossed it goes similar to last time with no major issues.

boricua_63

xxyzed: isn't that unbelievable. I still haven't receive a call back, so I sent a message to my primary doctor. I know he will find out for me.

Take care

Hugs💕💕💕

HelenWNZ

morning everyone, feeling heaps better. I had the big shave yesterday and coped pretty well with that. Also got a wig all trimmed up ready to go. Took my boys out for lunch so happy to be able to enjoy food.

with having no reconstruction my wounds are all healed up - there are so many horror stories about the ongoing issues with reconstructing I am kind of glad that option wasn't given to me at this stage. One less thing to deal with.

I had a note pad where I wrote down meds and times etc but did stuff up once by taking a sleeping pill at night instead of something else but hey got a few good zzz's that night lol

I dissected my pathology report as well and it was pretty grim reading. I got focused on a few of the findings that scared me too so for peace of mind your right in getting them checked out. I can't get my head around having a ct scan in May which showed no distant spread yet in my op they found so many nodes affected and two types of cancer. Had op but didn't start chemo for 7 weeks so how can it not have spread?

Anyway I'm going to enjoy this good week before round 2next Friday.

Take care

Helen

xxyzed

HelenWNZ - I'm the same as you. The surgeon thought my CT scan showed 5 or 6 effected nodes. It turned out all of the nodes that were removed were cancerous, all 20. They don't count the nodes as distant spread. They are considered locally advanced in Australia. My radiologist said that some of the nodes removed are taken from between a muscle so perhaps those ones are obscured in the CT scan by the surrounding tissues. She also said that the cancer normally moves through a pretty systematic path through the lymphatic system with the next likely place they would spread to being the nodes in the middle of your chest between the breasts and the nodes above the collar bone so that is where they will extend the radiation to. I think it is almost certain with so many nodes effected that the cancer cells are floating around the body and they either haven't settled anywhere yet or just aren't large enough to show on the scans. Either way I think chemo is a critical part of the treatment and we should use whatever support we need to get through the treatment course.

boricua_63

Hello ladies

Hope everyone is doing good and able to handle those side effects.

Well my hair has started to fall out. Exactly 14 days after first treatment. I guess I'll be shaving my head pretty soon. I didn't get a wig and I don't think I will, I will be wearing hats.

Take care everyone

Hugs 💕💕

Lindzanne

Helen and Xxyzed I know I have had the same fear as the two of you. 28 positive nodes--have yet to meet or find anyone on the boards here who had as many. I agree that chemo seems critical. My onco, before my bone and CT scans, told me I still only had a 10 to 15 percent chance it had spread. I am still shocked at that low number.

We know so much about it, yet breast cancer seems to be such a crap shoot. So many folks with no or little lymph node involvement having or getting mets, folks with many many nodes never having a recurrence. I don't think there's any rhyme or reason to mets--not a very scientific way of thinking but from everything I've seen I have as good a chance as any of it not spreading or coming back regardless of how many nodes. Yet, I know I will live with that shadow of the possibility. But we could all very likely be ok.

Someone with high lymph node involvement told me that their onco had said their lymph nodes did their job and that was something good. I try to see it that way too. And most of my involvement was microscopic, meaning the nodes weren't full and bursting and moving onto other places, the nodes were still catching them.

The fear of this stops me cold sometimes, but these are some of the things I think about too to try to move on to another thought. It's scary.

My hair is coming out fast too! I shaved it a few weeks ago and then went even shorter and now very short stubble is coming out on my hands in the shower. Definitely feeling some stares this week. I haven't purchased a wig and I think I'm just going to do hats, scarves, or rock my bald head. Stares be damned. But it's uncomfortable, slept in a soft close cap last night someone sent me to prevent itching or the hairs catching on the pillow in an uncomfortable way as they come out. I'm not as upbeat as I sound--I've cried a lot this week looking at my half bald head.

Helen, I'm so glad you are feeling better and getting up and about.

Boricua, that is unbelievable about the cervical results. Did they do a pap before your treatment? That is the only thing that makes sense is that there were abnormal results from that. Either way it's unacceptable that you didn't know this.

Hope you all have a good night.

boricua_63

Hi

Lindzane, you look good with your head shave, I like it. And my primary doctor got back to me real quick and he said my pap came back normal when I had the test done in March. So I don't know where the cancer center got that information, all I have to say is that they need to get their act together. That is something no one want to see on their chart, especially going through chemo.

Hope everyone have a great weekend.

Keep on fighting ladies. We got this.

Hugs!!!