Starting Chemo in September 2017

LPH

Yes getting another port placed next Tuesday 9/23. Hopefully 2nd times a charm. They thought it may be infiltrating (fluid outside the vein) but when they tested it after they removed it they said it was functioning properly.

LPH

Cheska- we are on the same treatment. Maybe a few weeks apart. I am getting neoadjuvant chemo then mastectomy then Herceptin for 1 year. With possible radiation after surgery.

My SE were bad this weekend. I either had nausea with vomiting or diarrhea. Was only given prochlorperzine for n/v. Toughed it thru the weekend. Probably should have oncologist on call. I was able to get IV fluids and IV nausea meds yesterday. Feel much better today. Advantage of working in a cancer center-able to get fluids and still do my job.

JD_RN

Hello peeps - I wish I had the energy to write a full post but not happening tonight- just wanted to let you know that I'm still here sort of . . . I have now termed the current stage of my cancer journey: "As my liver turns"

It's been a hell of a week with ups and downs and more downs . . . can't even remember where I was so the short recap is that the drugs that were trying to kill my slime (we actually got sensitivity late last night) served to toast my liver so my chemo that was supposed to start last tuesday week was cancelled last monday and moved to this Thursday. In between then I have been stuck almost every day to check what's up with my liver which was trending up then decided once I started my drug holiday to start to trend down - that was on Friday. Then I was tested again today and liver enzymes were slightly up but not as much as before so my MO scheduled a STAT liver scan (looking for mets) and it was clear. So chemo is still on for Thursday but my MO has consulted with a hepatologist (liver specialist) to see whether given that this is a drug induced liver stress that she still has to dose reduce the Taxotere or whether it is safe to give the regular dose. So tomorrow will reveal a new plan . . .

Did I mention my adorable son broke his arm last Thursday? Yeah that too - but he's going to be just fine.

Amy - sorry you are rocking the thrush again.

I'm sorry for everyone who is having SE - I'm so emotionally and physically wiped out I have no witty words to offer - I wish I did. I will try to check in more often and re-engage. I'm super depressed and just am not sure how much more I can take if Chemo gets kicked again - I'm just so tired. I will write again in the morning if I can - by this time of day its just way too difficult for me to be coherent and witty all at the same time - I'm off to immerse myself in movies and "just forget about life for awhile".

Even though I'm not posting - I am reading and supporting and loving you all from afar

xoxo - JD

AndreaT

Hi all- been lurking for awhile but decided to jump in! Having my 2nd round of TCHP on Thursday, and am nervous. First round the diarrhea began around day 5 and has never left. It got so severe that I lost 7 pounds in 7 days, then ended up in the hospital two days last week for abdominal pain. Labs showed very low potassium, colitis and a UTI. Feel much better now, but wondering how I'll survive the next 5 rounds! Severe diarrhea lasted about a week- Immodium and Lomotil did nothing. Any tips appreciated

toughcookie_21

JD, I'm so sorry you're still not getting results with the abx. I really hope you get some resolution soon and your liver can handle the chemo.


AndreaT, welcome aboard and sorry for the circumstsnces you're here under, but this is a great group of ladies who you'll find lots of support with! I do have a question because I have been battling diarrhea since shortly after my first TCH infusion. Did you ever have colitis before? I'm asking because that is what this feels like to me. I have never had it, but I work in GI (medical devices) and I know the signs of IBD and colitis and that is how I would describe the pain and diarrhea I've been experiencing daily. Lomotil and immodium help marginally. I am really hoping this is not a permanent condition for me. I've never suffered from gi issues!

mkn86

keeping fingers crossed for you JD.

Despite the circumstances, Welcome Andrea!

hair started falling out today. tiny locks. not clumps. trying to get my head shaved tomorrow to get ahead of it.

Hang in there everyone

Binniebin

hi JD, this is such a roller coaster, try and hang in there, my heart goes out to you. So glad you can share your despair, probably one of the few places you can be 100% honestas we're in different stages of a similar ride.

LPH what sort of work do you do in a cancer centre, I am looking at starting chemo and ? Radio in the place I work which poses it's own set of issues

OCD, not looking forward to the hair loss, some of our patients really don't care but I'll be in the boat with those that really hate that part.

LPH

Binniebin-I work as a nurse coordinator with pts. It has been great having the support from fellow co-workers. I figure the more peeps I have on my side the better.

ewu

MKN, my chemo is postponed to this Friday, I'll have port and the first treatment on the same day, half an hour apart. I don't like the delay and get more and more nervous. Anyway, Friday will be here soon, and I'll know what's I am facing.

I read some people get less side effects fasting before and after chemo. Does anyone here try fasting? If so, how long do you need to do it?

Leilals

Oh it's so good to hear from all of you. I've been m.i.a, sick as a dog. My side effects we're fierce, due to my add. Health issues. Couldn't go for 5 days even with multiple laxitives. Felt like I was being poisoned over and over. Major brain fog. And now I am sitting here crying with the comfort of your words. Ordered the Katz book, thanks for that. And many thanks for the reminder to not wish time away. Was so strong until now, I hit a breaking point emotionally. I know I'll jump back up, this is the first time I've really cried since it all began. You all bring me so much comfort, thank you. Welcome all new people. Thanks again for all the help! Leila

toughcookie_21

ewu- I fasted before for 36 hours and after chemo for 24 hours and have had side effects, so I don't know that it helped me. I'm not certain that I'll do it again next week.

I had some previous experience with intermittent and extended fasting over the past 2 years. I do try to fast daily for 13+ hours, which is supported by my MO and there is a ton of research into daily fasting of 13+ hours and how it can reduce the likelihood of BC recurrence. My MO wasn't totally supportive of me doing an extended fast before and after chemo, but he said that he has seen the research on the benefits and basically told me that while he didn't support it, he couldn't stop me from doing it. It wasn't hard to do for me, but as soon as I started eating again, I've had diarrhea every day since 24 hours after the first chemo treatment. My normally healthy diet has been reduced to bananas, rice, applesauce, toast, crackers and soup. I find that I'm eating things that I normally wouldn't eat and not eating fruits and veggies because they just go right through me. I still have the diarrhea and the MO says that it's likely being caused by the Taxotere or Herceptin. He's going to make some changes to the pre-meds and adjust the Taxotere next time because I've also had a few other unpleasant side effects (nosebleeds and hives.)

All that being said, there is a thread on here called fasting that I found helpful when I was trying to decide whether or not to do it. Here is the link: https://community.breastcancer.org/forum/73/topics... . There are several people who have had good results with fasting. I just can't say that I'm one of them.

Good luck on your fist treatment!

Brightness456

Leila, I certainly relate to hitting an emotional breaking point. I'm still struggling to accept that this is my new life and I cry and feel sorry for myself a lot more than normal. I keep waiting to feel emotionally strong.

Ewu, I've been doing the 13 day fast since I read about it here. It's really not difficult. Other than that, I drink a lot of water and eat whenever I'm hungry. I've only had 1 treatment so far. If the cold I had turns out to be just a cold, my SEs were quite manageable, but if this cold was caused by the chemo, I'm a bit worried.

OCDAmy

JD, its been a rough road for you so far. Really hoping they can get all of this together and get you on your way to being cured. You must be exhausted with all the doctors appointments!

It is amazing to me how differently we are all reacting to chemo. I am sure a big part of it has to do with the type of chemo we are getting. I really have not had any nausea though two treatments. Now I am getting scared it isn't working because I don't feel that sick! I am sleeping again, it is those darn steroids that keep me up. I have worn my wig for two days in a row to work. It is a little itchy and irritating my head. I guess I will get used to it. Wondering what everyone is planning to do for your head? I think I need to put some cream or oil or something on it. It is itchy and irritated. I bought a silk pillowcase on Amazon and that feels really good, make sure to get one!

Also, my wig is too shiny. I tried putting some powder on it but that didn't really help. Anyone have ideas? I may go back to the wig shop and see what she thinks. I know it is silly but when I get home I take it off and then put on a soft hat. I know mu husband doesn't care but I do. I guess I will also get used to being bald around the house but I am not there yet.

On the plus side, I can sleep in later now, no screwing around with my hair!

ewu

Toughcookie, I never fast before. Maybe I'll do a low calorie diet instead of fasting. It's a good idea I should check with my MO first. Also the daily 13+ hours fasting sounds manageable. I am so sorry to hear your SEs, hope you find an effective way to stop the diarrhea very soon. It's this kind of SEs make chemo so terrifying.

Brightness, hope it's just cold and you will get better soon.

Brightness456

OCDAmy, your plus side made me smile! What a positive attitude!

Ewu, per my MO, it's not about the calories as much as the nutrition in the calories. She said if I'm not going to eat much, make sure I get healthy proteins and veges. She's strongly against fasting though, except the 13 hour which improves health for lots of issues, not just BC

IntegraGirl

Ewu, I fasted 48 hours before and 24 hours after each treatment (8 treatments over 6 months). With the exception of losing my hair and increasing fatigue (especially with Docetaxol), my SEs were nominal and my blood counts were normal and stable without any additional medication. You can google Valter Longo chemo fast and find his studies

JD_RN

Hey there BC family - or really just family now - today on as the liver turns our heroine receives more bad news from the medical establishment . . . but rebounds with humor and renewed vigor after a serious meltdown and a nap!

Let's just say it has had me crying all day . . . my MO kicked chemo another week because of my questionable liver enzyme values. I have yet another doctors appointment with a hepatologist (which is constantly flagged as not being a real word) to evaluate my liver at 8:00 am tomorrow morning. I had a long talk with my MO or rather she talked and I screamed and cried (not sexy but necessary) and she and my ID doctor really have my best interests at heart and I know that the liver is not an optional organ and that killing it would be unwise at this point. I had a stat scan yesterday looking for mets in my liver even tho there is no evidence that I have metastatic BC but my body seems to defy all medical reason and do whatever it wants. But I'm done being upset or maybe I'm just too wiped out to cry anymore - it is what it is and I have chosen to regroup and rest and be nice to myself (perhaps some retail therapy?) and just go from here.

Leila - as some of the more wise women on here reminded me - being strong is overrated . . . this whole thing sucks and it's ok to feel what you feel when you feel it and if other people don't like it they can STFU. But it's not how many times we melt - its how and when we choose to get up that defines us as the warriors that we are. When you don't believe in yourself we are here to believe in you and because we are all at different stages at different times we can always be here for each other - that's what makes this so special.

Amy - I bet you look sexy in your shiny wig! Even though I will not do the wig thing - you can wear a cap underneath it so it doesn't sit directly on your head - helps with the heat and itchiness I think. I would take a selfie of me in my backwards ball cap which will be my bald go to - but I look so terrible after today's experiences I would not like to commemorate this moment. I will send one when I look less like roadkill.

I hope everyone else is feeling well - I have to turn in early so I can get up and caffeinate and cover my f'ing PICC and take a shower before my 8 am appointment. As always loving you all and sending you strength.

xoxoxo - JD

AndreaT

JD, best wishes to you and hope your appointment goes well in the AM. Prayers are with you for the fight!

OCDAmy, do you have wig conditioning spray? Read somewhere that it helps flyaways so got some on Amazon. Haven't tried it yet since my hair seems to be fighting to stay on.

Andre

Selena1226

Hi ladies, I'm going to catch up on the past week+ of posts but, before I do that, I have sort of an unimportant but time sensitive question: When did everyone's hair start shedding? I'm day 14 from my first TC treatment and so far the hair on my head is holding strong. I have an appointment tomorrow to get my head shaved and my wig fitted / styled. I made the appointment last week because I was told hair loss should start happening between days 10 - 14. I can always reschedule, but my husband is home tomorrow and had planned to go with me. He's starting a new job on Monday in a different city that will have him away from home Sunday - Thursday nights so If I'll most likely have to go alone if I don't go tomorrow. I guess I'm just wondering about other people's experiences. When my hair starts shedding how quickly will it come out? I hate that this is such a source of my anxiety right now. I feel like my entire summer has been spent worrying about all these great unknowns and this, losing my hair, is the last one on the near horizon.

OCDAmy

Selena, I am on TC too. My hair held on until after my second treatment! It was shedding a lot (especially when I washed it) and was thin but still there. I had it buzzed on day 4 after my second treatment because it was pretty thin and I thought it would be easier to wear my wig.

Milkweed93

Selena - I started shedding pretty heavily on day 14 of TC, so I just shaved it. I figured it was going to go at some point, and it seemed as good a time as any. Good luck!

OCDAmy

So, I had never heard of fasting and chemo. I don't think I could fast for days. However, I am going to try the 13 hour thing. I suppose that means if I eat dinner at 6:00 in the evening I can have breakfast at 7:00 a.m.? That doesn't seem hard, just need to cut out any evening snacks. I drink so much water now I am not has hungry in the evening anyway.

CA-Sunshine

Hello All,

So l finally did it... Went shopping for chemo goodie , packed my chemo bag, picked up my custom wig which looks GREAT. At the hospital now for pt and chemo teaching.. l will have my port placed Monday and first DD AC will be Tuesday monday... For those here who has already started DD AC-T how are things going.. My anxiety is starting to skyrocket...😳

CA-Sunshine

Also l tried order cold mitts for my hands & feet on amazon it say there are no longer available please advise what to do next..

OCDAmy

Sunshine, I just take 4 quart sized zip lock bags with me. They have a crushed ice machine at my infusion center. I brought them in a cooler the first time but my chemo nurse said to just use their ice. I fill them up about 3/4 of the way with ice and then wear really thin socks and get a pair of surgical gloves there.I sort or wrap the bag around my toes and then dig my fingers into them up to about the middle knuckle. They have washcloths there and I put them under my hands and feet. I only do it during taxotere which is one hour and the ice lasts just fine. I was going to use frozen peas but I think the ice is colder. I do sometimes pull my fingers out because it gets so cold but I try my best to keep them put.

toughcookie_21

OCDAmy, yes that's how I am doing the 13 hours of fasting. I had started doing an overnight fast about 2 years ago because I was gaining weight despite being active and working out. Then after the bc diagnosis I read the studies about the reduction in recurrence when you fast for 13 hours or more a day and I got more serious about it. It wasn't hard to do, I just had to stop snacking at night. Now if I could only get my kids and husband to do the same!

Meg101

Hi everyone. I've been lurking for a while, and just want to thank all of you for sharing your experiences through this journey. You have no idea how comforting it has been to get a glimpse into this whole BC/chemo journey via your posts. I had my first round of chemo on Monday, September 18th. It went well. In fact, it was a blast. There were several women including myself who were all being infused with T/C at the same time. We started talking, and as time went on we all had a few good laughs. I'm on day 3 after my first round and the only side effects so far have been diarrhea which started this morning, and my mouth feels "sensitive". Took 2 immodium for "the runs" and it's working. I've been doing the swishing with salt/soda water, brushing teeth with Biotene to keep mouth sores away. My two biggest stressors are hair loss and fear of puking. So far Zofran has worked for the nausea, but the hair loss is inevitable. I just want to express my thanks again for all of you who are sharing your experiences. It really does help.

CA-Sunshine

Update my port placement has been moved up to 6am tomorrow and not Monday 9/25 for port and the next day chemo. I like this new plan better with them few apart

ewu

I have been doing the 13+ hour fasting like many of you suggested. It's very doable, just need to eat an early dinner and say no to snacks. I tried to go longer, but couldn't get more than 24h. IntegraGirl, nice work of doing 48hours, and normal blood work is big win!

My first chemo is tomorrow, I worry about putting port and doing the chemo on the same day. Seems lots of people have pain after placing their port. But I don't want to delay the chemo any longer... yeah, I am just very nervous right now.

Amy and Sunshine- are you doing the icing because of this drug Taxotere? I think I'll have AC tomorrow. Should I ask the nurse if I need to do the same?

JD- you are a true fighter! Hope some good news goes your way soon.

CA-Sunshine

Yes Ewu, I plan to ice during treatment starting Tuesday. Good luck tomorrow with everything. I will  have my port placed tomorrow. Were you told not to take vitamins other than a MVI?