Anyone Starting Chemo in June 2016

labscientistmom

Clarkblue, welcome to chemobrain! It took me 3 days on my second week to balance my checkbook, then do my part of our budgeting (we do Financial Peace University by Dave Ramsey) because my husband paid bills (yay, I got disability check!) It was so weird, like all the time having the feeling like you spent all day @the beach in the sun and your brain is cooked. NOt good

re: steroids: Moondust I take 8 mg before, day of chemo and been taking only 1 the day after because I get a bag of it as a premed on chemo day too. I am on taxol and it has more immediate allergic reactions so that's why I am getting more I think. I didn't like how I felt the day after so I started only taking 4mg the day after. I am so naughty!

Elocea: love the hat with hair, it looks great! I ordered a halo wig, and have a bunch of hats, so planning on that. also got a free wig from ACS, gonna take it to my haircut lady (stylest? beautician? barber?) to cut/style when I finally lose my doomed hair. It seems to be thinning on top and I keep waking up with a sore head, but otherwise....

labscientistmom

CarolAG: did you see the count, maybe not as low as 20 for me: 8 mg day before, 8mg day of at home, more in a bag as premed infusion (but I can't remember how much, actually looked at the bag last time but can't remember, they put poison in me since then) and then 4mg the day after.

Oh, and sadly, I am allergic to shellfish, so they are using the contrast dye, but I will premedicate on steroids the day before and the day after and take a benedryl just before. yay, that's not scary at all, is it. Thanks for thinking of me.

Heathet, so sorry about the dye not helping your healing. I wonder if acupucture would help? maybe ask PT department about wound healing stuff.....I will think on that ...

Moondust

SthrnYankee, sorry you are having issues with swelling and fluid. The only thing I can tell you to do is call the surgeon's office and tell them you think you are abnormally swollen. They won't make you wait until the 23rd if something is not right. There are other forums on here for surgery and you might find more information there. This bizarre train ride we all find ourselves taking is quite a wild one. I can understand how upset you are. I was that way when I was first diagnosed, and it has taken several months for me to calm down and get a handle on what is happening. This site has wonderful support. In a while you'll realize that although this is a horrible inconvenience, you WILL be okay and you WILL get through this. We're all on this ride together, so hang on! We have a lot of life left to live!!

labscientistmom

Moondust/Alice: your encouragement is so great! Cancer is gone and we are doing the chemo & rads to make u sure it NEVER comes back.

SthrnYankee: the surgeon can drain the fluid with a syringe to get some off. It may come back but I agree with Moondust, call them tomrrow, don't wait. I had my drain for 3 weeks.

ClarkBlue

Dolly, I agree with labscientist, you're probably llA. The only reason I'm a 2 is because of the one lymph node.

I've had my second TC treatment and it's just amazing to me how different we all are. I think there are a few things that are common but many of the SEs are individual. It seems like the common ones are;

-Flushed face days 2-3 usually due to steroids

-Taste changes: nothing tastes good, especially water

-Constipation; this may be an antinausea thing. I got super constipated but I know some got diarrhea. I took Compazine for nausea. Anyone get diarrea have with that?

-Bone pain; due to Neulasta shot. Alleve was the only thing that worked for me. I also took Claritin beginning the day before treatment. Pain stopped by day 5 for me.

-Hair loss: yep pubic hair goes first. I noticed it every time I used the restroom and at first thought I had just not tidied up after "grooming" but then realized that I had "groomed" a few days prior. Ah well...nothing like no boobs or pubic hair to make you feel like you're 12 again!! If you're not cold capping you'll start to lose it around day 15-16.

-Fatigue: I think this varies with the treatment you are prescribed. I feel great day 1. Days 2-5 are tough and chemo brain kicks in. Then I feel normal until my next treatment 3 weeks later.

-Neuropathy: I think this varies with the treatment you are prescribed. I am not icing anything mostly due to fears of the icing keeping any cancer cells around, but I have not had any problems as of yet. I don't expect I will, but I'm thinking it's more of a Taxol thing??

I have also made it a point to walk, walk, walk! I also am only eating a plant based diet since my initial diagnosis in Feb. No sugar, meat and very little dairy for this gal. Supplements I'm taking are only Onega 3s and Vitamin D. I'm still drinking alcohol though - let's not get crazy!! And coffee...

How about everyone else?

labscientistmom

Clarkblue: I think the big difference between you and me is I am on weekly taxol and you said every 3 weeks, which I think is dose dense. For the water flavor thing, maybe try some kind of lemon additive? I found some in the tea aisle for my hubby or use the caffein free tea & honey little squirt bottles to help with taste? I don't have flavor changes that i have noticed, but water does sortof taste weird in my bottle sometimes. I make tea with fruit /herbal teas to not add caffeine and its much tastyer than water. sometimes I mix it with coconut water. Maybe that would help flavor.

I get Zofran for nausea, if the compazine stops working for you, take Zofran its amazing. Most days I have had constipation. My bad bout with diarrhea on Sunday is resolving today as the day went on. The on-call MO said its more likely that I ate too much of something that tipped me over to the more freaked out state, rather than something bad.

Do you take a protein shake? I found a couple good ones, plant based, no soy, no gluten, not too many calories. Vega ONe from Amazon. another I got from Target that I can't remember the name.

HelenWNZ

You ladies are amazing - your all doing so well.

Take Care

Anonymous

Grrrrrrr...I was wanting a 1B. But I had sort of thought there was a strong possibility of a 2A. I thought maybe because the cancer in the one lymph node was microscopic then that might have made me a 1A. Hey you know what, I am staging myself ladies...I am going to be a -2A. There you go. That makes me feel much better and will work better with my positive attitude. Haha

Thanks labscientist about info re scans. I thought it pretty weird that I was almost laughed at when asking. My doc just said, 'Why? There is nothing there, you are fine and no point in stressing you with useless scans that tell us nothing'. I am guessing though that on NHS we are not rattling out as many tests, if they think it's not of any use. Trouble is though that those tests do give peace of mind. I did have a heart scan though. That was maybe enough hassle for me to be honest.

Clarkblue, laughed at remark about no boobs and pubic hair and feeling 12 again. It is interesting to read your SEs. I got the flushed face for a day or two, thought I'd caught the sun haha, but then I live in Scotland, so should probably have known better. I also have a disliking for coffee just now which is strange as I love coffee. Only managed two cups since I came out of chemo ward 12 days ago.

I have however cut out alcohol permanently!! No more alcohol for this girl ever. I worry it plays a factor in breast cancer!

Clarkblue, did your doctor say you were IIA just because of that one lymph node? What size was the cancer in your lymph node?

Dolly

Heathet

StrnYankee- On April 19th I had a BMX. I also had a lot of swelling on my left side - the cancer side. It's almost 2 months out and although the swelling has gone down tremendously I am still have some. It gets better - it just takes time. In my case I haven't quite healed on the left side so they are attaching a PICO device that will provide negative wound healing so hopefully I can get the all clear for chemo. I'm actually sitting in the surgical ward of Troy Beaumont waiting for them to call me back! If you are feeling uncomfortable and the swelling isn't improvingcall your PS - they are there for you. I see mine on a weekly basis.

Anonymous

Llrose and Southern,

It gets better HONEST. I am only two months in and feel normal again. Just refuse to allow this to beat you. I think of this cancer as my unwanted and uninvited dinner guest. He had no invitation. He turned up at the door, nobody really knows who dressed him and he is getting sent back out the door very soon! It really is just a temporary state we are all in. We will ALL be fine.

Anonymous

Ooooops Mondust, I forgot to say, I was up sort of late coz I am not working at the moment. My wonderful employer has given me 6 months off full pay to get better and be back strong and fighting fit. My employer is wonderful!!!

Anonymous

Labscientist, should I NOT be taking any caffeine? Nooooooooooooooooooooooo

boricua_63

Hello

I am too starting chemo end of June beginning of July, exact date is unknown. I was diagnosed with stage 2 grade 3 invasive ductal carcinoma. I had mastectomy with immediate reconstruction on left side on May 23rd. And also lymphs nodes were removed, ( which they came back negative) (that's good news)

My oncologist, before giving the actual start date, ordered a CT scan of my chest, abdomen and pelvis and also an echocardiogram, which depends on those results that's when I'll start chemo with hormone therapy.

The wait for that appointment is giving me a bit of anxiety.

I already cut off my hair, I don't want to have to worry about the cleaning up and want to concentrate with the recovery.

I have been very strong thru all of this because I have three daughters and I don't want them to be sad, but some days I get up very sad bc of all of this. I don't sleep thru the night. ( sometimes I wake up once or twice a night) which it makes it even harder for me to functduring the day. Am also in a lot of pain from the surgery. (I know is only been three weeks, but still) (I don't take my pain medication bc I don't want to spend the whole day sleeping)

Has anyone else gone or is going thru this? The no sleeping? The pain? The wait for the CT scan and echocardiogram? Any advise?

Thank you

KNardo88

Thanks to all of you for the input on the wigs! I'm going to try on a few in person this week. Probably going to chop quite a bit of my natural hair off first, considering it's mid-back length...

For an update, I called to get some clarification from my MO regarding my treatment regimen. Apparently, it's been studied that in patients with early-stage, small tumors (<1cm), with negative nodes and ER+/HER2-, the addition of Taxol following AC does not provide additional benefit, just more risk of issues in the future due to the additional toxicity. I was hesitant about this all at first (because I know MANY who have all of the above characteristics with their cancers and were treated with AC&T), but I have no idea the real ins and outs of their circumstances, and can only trust that my team of doctors know what's what regarding my own particular case. Everything was explained to me in depth during the phone call and certainly made sense, but you can't help but wonder if there's steps further that one should be taking... So I'm glad I called and asked more questions! That said, we're on for 6/23 for my first infusion. Ahhh!

SthrnYankee - All my best to you--- I am exactly where you are right now, along with so many of us. I, too, up until my diagnosis at the end of April had virtually nothing wrong with me. It does feel like it's not real, and it is definitely hard to swallow. I'm 27, so I get a ton of those looks from people when I go to my treatment center. I'm reassured that it does get easier with time, and we will get through this!

Xoxo

Anonymous

KNardo,

I read your first sentence there as:

'Thanks to all of you for the input on the wigs! I'm going to try on a few in PRISON this week'.

Had to reread haha...had visions of prison officers trying on wigs with you!

Anonymous

Does anybody know what the difference is between FEC 80 and FEC 100?

LJ2016

Just wanted to update: had echocardiogram and all was fine to start chemo tomorrow. I know several of you will be starting tomorrow, too. I have felt so anxious to start doing SOMETHING to the cancer inside me, but now that it's tomorrow I feel unsettled. I have been in such a fog since finding out, but tomorrow it will be REAL.

CANCER STINKS! My husband has had two different kinds of cancer in the past 8 years, and now I've got breast cancer. It IS possible to get through it and have your life back afterward. The good thing is that it's changed all of us in mostly good ways. We are more kind to each other and compassionate. My daughter serves on the exec committee for OU Relay for Life because of her experience with her dad's illnesses, and they raised over $200,000 for the American Cancer Society a few weeks ago.

I pray for all of us to do this fight really WELL. I pray for our kids, who don't deserve to have to have this worry in their lives. I pray for our spouses, who are trying to be strong for us and our kids. Good will come from this as well-we just need to keep putting one foot in front of the other and pretty soon we will be on the other side.

Thanks to all of you for posting so I know that I'm not the only one who is going through so many emotions and having so many questions. I am sad we are here, but glad we can do it together! XXOOXX

Anonymous

LJ,

Good luck for tomorrow. I hope you have a good infusion and that your nurses tell as many daft jokes as mine did. I had two very lovely young ladies who chatted to me about about all manner of things during my 2 hour infusion. I also had an additional 3 hours on top of that for cold capping.

I wonder what it is that makes so many of us get cancers these days? Years ago it was more of an unusual thing. Nowadays it seems to be a regular occurrence in most families.

What chemo regimen are you going to be on? Don't be anxious. Go in and just do it! You will be fine!

Dolly

NattyB

LJ2016 - beautifully said!

Boricua - I'm not sleeping either. I have Ambien (got that when i was diagnosed)and it doesn't consistently help. My latest plan has been Benadryl at bedtime and when I wake up in the middle of the night and can't fall back asleep I take a .25 Xanax (got that when I was diagnosed too). It seems to get me at least 5 hours which is better than the 2 I was getting before - I function best with at least 6, this is the suckiest part since it really messes with out day to day.

Southern yankee (I am one too)and Knardo - me too, totally healthy, no meds, no "risk factors" - which is kinda funny to me now after spending time on these boards and seeing who is truly affected by BC - it's everyone, no matter what you do.

Heathet - thinking about you and crossing my fingers!

Labscientist - crazy about the shellfish, ugh! I'm weekly Taxol too (with Herceptin) and your posts about the GI stuff has helped me prepare for both circumstances. Curious - do you wear contacts? I'm going to post over on the weekly group to see how that has gone - and what, if any eye drops help. I start tomorrow.

Clarkblue - thank you for the timelines, esp the pubic part going early - that's one maintenance area I wont' miss:) I'm going to ice my hands and feet, the neuropathy scares me well so does the chemo brain since I am an analyst and well, I have to think most of the time in my job, lol. Going back on the 27th so I'm a little freaked - going to have to really check my work, a lot.

Elocea - you look amazing in your hat - I'm convinced I need one now too - great for the quick errands when I will invariably see someone in the grocery store who doesn't know. Thanks for posting the pic - you are beautiful!

CarolAG

Hi has anyone had temp spike up a little around 99 five days after chemo? I was told to worry if it hit 100.4. But I normally run a little lower temp in the 98 range so I'm afraid this might be a fever for me. Does anyone know if this is normal after treatment?

dawnmarieg

I start my first Chemo June 22. I am nervous about it. I had a double mastectomy May 26 and have ended up in Er 2x and being admitted for 4 days due to fluid build up around left side where the lymph nodes were removed as well. I have my port placed at 8 am and start my first chemo at 12:45 am. I got all my goodies to take with me, the nausea drugs and some numbing medicine to apply pre port insertion. My dr said I would be awake for the port and this has me freaked out!!!!

DX April 2016

Double Mastectomy left lymph node removal I opted to have right breast removed

Stage 2 ER+PR+ Her-

12/20 Lymph nodes positive

Start Chemo 6/22

Have 2 sisters, one older and one younger dx with BC in the past 18 months

Anonymous

CarolAG, If it is still in the healthy range then you are OK. I have been checking mine too every hour or so and mine goes up and down. I find I go up a fair bit when I have just eaten, which makes sense. Maybe you have had hot drink or food? Feel your actual head....does it feel hot? Do you have sore throat, shivers etc?

Anonymous

Ladies,

I have just watched a film on Youtube about how to prevent BC returning. It seems that there is a newish school of thought that if an anti-inflammatory like aspirin or ibuprofen is taken once a day, then there is a drastic reduction in the chance of this cancer coming back. It is to do with inflammation in the body. In fact it is said that if an anti-inflamm is given prior to the actual operation to remove the tumour then the chance of recurrence can be reduced by up to 70%!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Do any of my June chemo buddies know anything about this? I am going to start taking an aspirin.

Dolly

Moondust

Coffee-lover, thanks for the avocado reminder! I usually eat about half an avocado each day, but increasing the amount will be a great way to get more healthy calories! Last night I made avocado pesto.

Dolly, it's wonderful that you have 6 months off!! Hooray! And today I learned that my job is ending a week earlier than I thought. I'm doing a happy dance because I think my hair might last that long. I am still drinking caffeine, although not as much as usual. They told me I have to drink an extra glass of water for every caffeinated beverage, and I'm SICK of drinking water. I do not drink alcohol, however, and haven't in a very long time. I still think you might be a 1B because your nodes were micro-mets only. Please let us know what your doctor proclaims!

Elocea, you look so cute and young in that hat! Great choice!

Angela, I am getting things done much slower than usual. My memory sucks too, but it has for several years. I am learning a lot of coping strategies. Lists, timers, and phone alarms are very helpful!

Keely, thanks for the SE rundown. I haven't slowed down too much except if I try to do anything strenuous the fatigue kicks in. I have a fitbit and get at least 10,000 steps a day. I'm not a sitter, so if I'm not walking I'm standing either cooking or working around the house and yard. I gag when I look at all the pills I think I need to take every day, because I am almost as tired of swallowing pills as I am of drinking water! Vitamin D, K2, curcumin extract, fish oil, glucosamine, calcium, a B vit combo, and probiotics.

boricua, this is all happening so fast for you! I think you need to accept that you'll be feeling unhappy, nervous and unsettled until you get through all your tests and start the chemo. Just let yourself feel that way - don't try to be strong. Tell your daughters that you feel sad about having to go through the treatment process but that you will be okay in a few months. I'm sure they would love to help you. Have you tried some milder pain meds like Tylenol? It might take the edge off. And you know, there is nothing wrong with sleeping a bit this soon after major surgery. I hate being doped up too, but it's okay to take the pills for a day or two to give yourself some relief. Healing is faster when you are not in constant pain, from what I've read. I had a PET scan and just kept walking and walking every day until the doctor called. Your echocardiogram is probably to see where you heart is at because you might be getting chemo that could temporarily make it weaker. Take it one day at a time, and come on here often to chat! I find that is the best stress relief for me!

LJ, I'm happy to hear you will finally be starting chemo tomorrow. I'm in your pocket!!

CarolAG, just keep monitoring your temp once a day. You will see a trend in a few days. But nothing to worry about yet unless you actually feel feverish. Of course, sometimes a hot flash will feel like that too.

If you haven't filled out your Profile and made it public, please do it so that we can all remember each other's details about Dx, treatment, etc.

Moondust

Dolly, the curcumin I take (aka turmeric) is also a potent anti-inflammatory.

Jane75

Hi ClarkBlue.

I started 18th May the first of 4 sessions of TC and same as you, no real side effects. Had 2nd session last week and a bit more tired this time right once the steroids the day after wear off but it is doable.

Only 5 weeks to go until the last one!

CarolAG

Moondust:

Actually I do feel kind of feverish. But I am still flushed on my face and neck since Saturday and it's a little hot. Up until today my temp has been fine though. I wonder if it would be OK to take some Tylenol or does the doctor need to ok that?

My normal temp is pretty low usually so I think I'm feeling the 99.3.

Anonymous

Moondust...I was taking curcumin, then stopped after all of this. WOW....I am defo asking my oncologist about this stuff. In meantime, I am taking an ibuprofen a day. I am glad you have one less working week to do. Is that you off for good or just for a break? I am so blessed to be allowed to sit at home and take care of myself and NOT work at the moment. But it is mostly to do with being a school and being open to bugs and colds etc.

I am impressed with your list of things that you do and take Moondust. You seem to have everything totally in your control in terms of food and supplements and water etc. Can I come stay with you please and have you put me on your chemo plan??? I fear I may do much better under your instruction.

Dolly

PS Elocea, I also liked your baseball cap. You look fabulous in it and cool and trendy and very pretty. Are you not cold capping?

Anonymous

Moondust, I have Turmeric powder. How much do you take every day?

DistrictGirl

I totally get comments about "changing from moment to moment" in terms of how you're doing!!

I feel like I'm doing pretty well most of the time, but do have my darker moments. Or these days, my paranoid moments!! I've broken out in a strange rash all over my body (no itching, no fever) - and I haven't even started chemo or had surgery yet! Maybe my body is protesting chemo in advance Docs are puzzled, MO scheduled an appt with a dermatologist tomorrow. Of course my mind jumps to the worst possible conclusions, but my friend told me that this is just practice for when I start chemo - practicing mindfulness and intuition and dealing with strange symptoms, and only focusing on what's presently happening and not what COULD happen. Such great advice for me!

Also, I just want to share how grateful I am for all of you sharing how you're feeling during and after chemo infusions. It really helps me wrap my head around what my experience might be like and seeing your strength helps me believe I can do it!