First Chemo treatment done

[Heart Sutra]

...and they've got to be kidding that it gets worse.

Sue was told that she was going to get a heavy dose of AC, but they should have mentioned the truckloads... The preventative shot to keep her white blood cells from dropping came the day after. Her counts are good, they just want them to stay that way.

The first and second days were a breeze, today she is totally wiped out, not moving from the couch, and feels like she was beat with a bat.
She tells me that she can't imagine it is going to get worse than this, and then she cries. Nausea is ok, meds seem to keep it on the low side, but her appetite is gone.
I am convinced that she has the flu on top of it, since I seemed to have a mild case...
She has no fever thankfully, but she is a very sick girl tonight. She is so athletic and healthy, it is really upsetting to see her like this, I've never seen her like this.

All of your advice on this subject has been right on the money. She took the meds before nausea really set in like you've all said, and she hasn't really gotten hit with that side of it. Drinking lots and lots of water. We're hoping tomorrow brings relief. There's always that one friend who offers pot, but she's saying no. We don't use (we don't even drink), but if it made her feel better than she should have at it. This, completely and entirely, sucks.
As always, your experiences really helped prepare us for this.
Thank you all for being here

[Mary Jo]

Hi Sue and Kevin,

Oh.....how I remember the chemo. I finished my 4 A/C - 4 Taxol/Herceptin - November 30th, 2005. I received my first chemo on a Wednesday and remember by Friday feeling just like Sue. I, too, was/is a very athletic person and NOT a sitter by any stretch of the imagination. I remember hardly having the energy to get up off the couch. The good news........................that was the ONLY day throught out all of the chemo I felt that bad. The only day.

Is Sue receiving the dose dense regimen (every other week) or the every 3 week regimen? I received the every other week regimen.

Well, I'm confident tomorrow will be a better day. Drink, drink, drink and drink LOTS AND LOTS AND LOTS OF WATER. I'm convinced that helped me along with as many of my walks I could continue to do. I did manage to get in a 2 mile walk ALMOST every day through my 16 weeks of chemo.

Give Sue an encouraging hug,

Mary Jo

[Chelee]

Sounds like Sue is right on schedule. At least for me the 3rd day was ALWAYS the worse after chemo. http://www.her2support.org/vbulletin/images/smilies/frown.gif First & 2nd day was always easy. That 3rd day I was wiped out and felt awful and absolutely no appetite at all. Just misrable. Had to force myself to eat small amounts of food to keep my strength up. Eating or drinking anything was HARD for me.

I had TCH...it was bad enough. But from what I've heard...the AC is even harder. So I am really sorry to hear how bad Sue is feeling. I can only imagine how difficult it is for you to see how bad she feels. But just think...thats one trt out of the way. Its not easy...but she will get through this. She is so blessed to have you there to help her through this. She needs to just take one day at a time...thats all you can do. She needs to listen to her body and rest. Seriously...it usually is the 3rd day that it hits the hardest. Comes on out of the blue and wham. But it slowly starts getting better until the next trt.

Some people get through chemo easier then others...but for me I went from my bed to the couch on alot of days. I was so tired and hurt all over it seemed. Feeding the dogs was an effort. But then things would slowly get alittle better before my next chemo. I would have some good days. But again, everyone is different, some people actually work through their trts...which I don't know how they do it? Tough women! I just kept trying to remind myself that the chemo was kicking some cancer behind!!!

Make sure she keeps the water going as hard as that is sometimes. That is important as you know. Little bits of food...whatever she can get down. Its hard to see now...but there is light at the end of the tunnel.

I'm sending Sue warm healing thoughts and prayers.

You both hang in there.

Chelee

[Ruth]

Kevin ~ I want to start off with saying what a WONDERFUL positive influence you must be for her.

I had DD A/C and I was very athletic active woman with 3 small kids and it threw me for a loop too. Walking helps the day after treatment, lots and lots of water but also popsicles during infusion to help with the mouth sores later, don't eat favorite foods the day of A/C...I still can't have chicken salad 3 years later! I was offered pot by everyone out of the sky...professors, teachers, a friends grandmother...she said she could get some she knew from her "Bug Man"...he just looked like it :-) but I talked to my Onc. about it first. He was not against it for most chemo's however he said that on A/C he doesn't think it is a good idea because so many patients end up with thrush if they do it. Mouth sores are bad enough without adding a huge yeast infection. So I didn't do it but certainly made sure to rest, take my nausea meds and keep a clean mouth. Our local pharmacy had something called "Magic mouth wash" to help with the mouth sores that lots of people used.

A/C is cummulative so it will be a rough road ahead. I wish you both all the best and if I can help in anyway I would be more than happy to.
Ruth

[cafe1084]

Hi Sue and Kevin,

I'm no expert by any stretch of the imagination, being new to this myself, but I was hoping something I may write could make it a little more bearable for you guys. I've had 3 AC tx's so far and, although I know everyone reacts differently, the first 3 to 4 days seems to be the worst as far as nausea and loss of energy. The Nexcura site was right when they recommended Zofran 8 mg before the first treatment, then another later in the day, then 2 doses daily for the following 2 days. I had hardly any nausea with my 2nd and 3rd treatments. I've found that taking something mild, like a phenergan 12.5 mg or whatever your doc may recommend, in the mornings for a few days after the initial 3 days seems to keep the mild nausea I have throughout the day at bay. It's very disheartening to go from taking nothing but a multivitamin daily to carrying bottles of medication with you all the time, but It's not forever

The thoughts of any food are purely horrific, especially if your digestion comes to a screeching halt like mine has, so I thank Swanson and Bill Cosby for chicken broth and Jell-O! The Jell-O feels awesome when I develop a sore mouth and throat (about the 5th day for me) and the broth is filling and easily digestible. Just a couple of suggestions to maintain some type of intake. Before you know it, you'll be craving salads and crisp, cold fruits.

I, like you, lead an active lifestyle and am healthy, so the hardest thing for me was to know my limitations and allow myself the time I need to recover somewhat before the next treatment. I know how hard it is to be so unlike yourself. That is the hardest part of chemo, so far....how weak and out of control and dependent it leaves you feeling. Some days, I feel the only thing in my favor is being strong-minded, stubborn, and having an extremely supportive group of family and friends. I think you are gifted with that, as well. I recovered much more quickly with this 3rd tx because i did eat, exercise, and rested instead of forcing myself to be the pre-chemo me. So, exercise, nap, eat, and definitely, lean on those who love you when you need to. I think they need to help you as much as you may need them to help.

Thinking of you both,
Steph

[tousled1]

Kevin & Sue,

Well, Sue is right on track. She will be very tired for a few days. As everyone else has said make sure she drinks lots of fluid. Each A/C treatment I got I had a different craving for what I wanted to drink so if that happens just go with the flow. I'm glad Sue is not nauseated. It makes you feel like you have a sleeping sickness. I know when I was getting my A/C I had absolutely no appetite. I ate a lot of chicken rice soup (not noodle) and jello. I could not eat any spicy food at all. And yes, it does have a cumulative effect. I'm glad to see that they gave her a shot to keep her white blood counts up. By the time the next treatment comes around she may have low red counts as well and if she does they will give her a Procrit shot the day of chemo. It's very hard to go through chemo but she has her fist one under her belt. I know that I just kept thinking when will this be over! I was so happy when I reached the half way point. Sue is so fortunate to have your wonderful support. Tell her to hand in there, it will get better.

[rinaina]

Like Sue and others, I was fine the first few days following treatment but then it hit. I felt like this for 2 weeks and then the week I was due for my next chemo I would feel fine only to get another treatment that week, and then it started all over again. I don't mean to scare you but I did get worse with each treatment however, I made it through as will Sue and looking back, yes it was bad but it could have been so much worse. I was able to resume my active workouts again shortly after my last chemo and have continued to do so ever since. There is a light at the end of this tunnel but for now tell Sue to get all the rest she needs and if she feels lousy then to just allow herself to sleep, rest and stay hydrated. I never completely lost my appetite but I did lose a few pounds because I was just to fatigued and exhausted to eat as much as usual. Best of luck to Sue, she is so lucky to have you.

[KellyA]

Hi there. Sounds like Sue is doing about the same as I did. Day 3 was always the hardest and then around the end of day 4 the fog started to clear. By day 5 and 6 I was feeling pretty good, and by day seven, I was at the pool with the kids. It was one good week, then one bad. The good weeks made the bad weeks doable.

I seemed to cry at the drop of a hat, and I'm not usually like that. I got especially depressed on the AC. It is alot of very strong medicine, and your body is stressed as it is, so everything is very unstable. My hubby and friends would have to keep reminding me, "It's the medicine, you're OK. Take deep breaths, clear your mind, be still and wait for it to pass." And you know what- it ALWAYS did. After awhile, when it became very predictable, I could tell myself that and it didn't scare me as much. It always felt so good to wake up on day 5 or 6 and feel like Kelly again. It was like someone just flipped a switch- it was that fast.

Sue is going to handle this just fine, and before you all know it, it will be a distant memory. Looking back on it, it reallly does go by so fast. I'll be thinking and praying for you both.

Love, Kelly

P.S.- It sounds like Sue is getting Neulasta-that is a good thing. I got Nupegen (sp?) shots and had to go for them 4-5 times inbetween chemo because my counts were so low. My insurance co didn't want to pay for that one.

[Becky]

Sue should be fine and I like that she is getting her treatments on Tuesdays. I got mine on Mondays even though I worked (yes, I did) because my girlfriend (who had been through it 3 yrs before me – she is at 5 yrs now and is absolutely fine) said – “do it Monday so you feel sh-tty at work and by the weekend, you’ll be feeling fine and have quality time with your family. This was great advice. Later, I was able to successfully negotiate with work to work from home on Wed – Fri of chemo week so I could lay in bed with my computer (I will always love my boss at the time for this – and allowing me to work from home when the colds and flus were raging through the office (working during this was my choice not their demand)).

Mouth sores will come but they will be worse the first cycle than any other. The digestive tract can get on track easier if Sue can tolerate yogurt. It helps with the mouth sores and it helps restore the normal flora of the digestive tract (get the kinds with active cultures). She should try to eat normally although she will probably not be able to eat as much. Remember that protein is important so the body can repair normal tissues that have been damaged by the chemo.

Now – I hate to remind you of this but around January 15 or so, Sue will start to lose her hair. The mess of this is depressing – far more depressing than shaving it off and being done with it. This is just a hint. If Sue is getting a wig, now is the time if she wants to be ready. After all the hair is gone, its much better than during the time it is falling out. Secondly, the rest of the body hair does not tend to fall out during AC – the rest of it tends to go during Taxol (sometime in the middle of it). So – I don’t know how Sue is but I am a BIG makeup person (always was). So I went to Merle Norman and got a makeover and bought $300 of makeup and skin care products. Even if Sue isn’t into makeup, she should get a good daily moisturizer and night cream. AC is really drying to the skin (and eyes – they can water a lot because of dryness. I found it hard to read).

<O:p

I thought the 2<SUP>nd</SUP> and 3<SUP>rd</SUP> treatments to be more tiring than the first but the mouth sores weren’t as bad. The 4<SUP>th</SUP> treatment wasn’t as bad as the 3<SUP>rd</SUP>. Taxol is not as bad but different and Herceptin alone is a breeze. I am thinking about you.

[Vi Schorpp]

I received my A/C treatments on Fridays so that I had the week-end to recover. I didn't need to take any time off work until my last treatment, and then I just took Monday off. The effects are cumulative! I remember that the only things I could tolerate were yeast rolls, that was it. They had to be fresh, and my husband bought me two for the day. It seemed to absorb the "chemicals" I felt I had in my stomach. The only other specific request I had maybe 5 days after treatment was jello -- but it had to be green jello.

I wish your wife well. At least she has one treatment behind her, and you behind her. Take care and be well.

[MJo]

This time last year I was receiving dose dense A/C, so I can sympathise. I can't add much to what's written here. I remember all I wanted to eat was melted cheese on wheat pita bread and ice cream. Bald can be very beautiful. It's great to hop out of the shower and only have to towel your head. Guys already know this. It's a revelation to some of use women. A/C is very difficult for some of us. My boss and I were diagnosed at the same time. She was very sick from the A/C for three days, then felt normal and went to a wedding and several parties during treatment. I had a more difficult time. One down, three to go for you. MJO

[Diane H]

Good advice from all above, I second the walking, even if it's just down the driveway and back. It's the thing you least feel like doing but seems to make recovery go quicker. I say sleep as much as you can too, though. I am so sorry you are going through this, it's rough and scary but just trust that you'll come out the other side. Because you will. Oh and just keep trying different foods, you'll be able to find something that you can eat. One week believe it or not it was big macs, another week canned peaches. Watch out for constipation and treat it early. That was one of the uncomfortable side effects that can be treated very effectively. Hugs and luv, Diane

[Linda]

I third the walking, when Sue feels like it. And I don't want to be the weirdo here, but other women told me to get acupuncture twice a week during chemo. I did it (never before or after) and I think it really helped. I think massage or anything like that would be just as good.
And, I smoked some dope when things got really knarly. I don't smoke normally and haven't even been tempted to use it since then, (not interested) but it took the edge off that toxic feeling, and was much more subtle and natural feeling than ativan. It really helped me just feel better.
Take care. She'll be through it soon.
Linda

[Heart Sutra]

Do you know how amazing you all are?

We are so fortunate for finding this site. This would be terrifying without the insight, humor, and compassion so freely given here.

Thank you for being here.

[Jean]

Hi Kevin and Sue,

Nothing to add to the chemo portion - just wanted to send my well wishes
to Sue and advise her when she really feels fed up with the chemo and she
will - we all did....somehow inside of us there is a huge amount of courage,
it is amazing....what we can do and I know she will come through this.

I found that back rubs from my husband helped a great deal...so Kevin
get the lotion.

Hugs,
jean

[Bev]

If your WBC's are merely low(1.3) and not in the cellar, see if your onc will let you skip the neulastas. N gave me lot's of muscle pain about 6 days after treatment. I only did it once. Onc said even if WBCs are low, they will go up on their own.

Any food you are eating now, you will hate in the future. Baked potatoes, applesauce and cranberry juice were tolerable back then.

Sleep lots for the first 3 days following treatment. Your reaction to future treatments will be similiar, meaning that it should not get any worse next time. It's the fatigue that accumulates. 1 down, 3 to go. You can do it. BB

[LAURIE]

Having just finished my last A/C just a little bit ago, the memory of what you all are going through is very fresh in my mind. You can get through this. Cherish ths time you have before treatments, when you feel well. You also have to rememeber you are going through an awful lot with having surgery, reconstruction, port and everything else on top of starting A/C. That is a lot to handle in 1 month. I did not have a great time on A/C, no one does. I threw up every time, but after the first time I knew what to expect a little bit. I got so anxious about treatment the doctor prescribed me Ativan to help my nerves and nausea too. That seemed to help. As far as your hair. I could not shave mine before hand. It had to fall out for me to believe it was going to happen. When it got real messy, I put it into 8 little pony tails, cut them out and then shaved my head. I would not of lost all of my hair, but I would of had lots of bald spots. Those pony tails I kept have been put to good use, I have sewed them to make my own bangs. This makes me feel real. People will say your bangs look so natural, and I can respond "of course they do, they are my real hair."

[KRISS]

Thank you Kevin and Sue for sharing. And to the rest of you ladies. I will be going through the same next week. Port in and first chemo on the 10th. You all have given such wonderful hints and insight to what many of us are just starting. It gives me an idea of what may come as well as things to ask my ONC when I meet with him on Tuesday. The best thing is being able to share this thread with with my husband, mother and freinds, so that they to can be prepared.
But most of all thanks for the words of support and hope that you all offer in your posts. Even though we do not know one another these words are dear and very comforting. All of you have a peacful day.

[Heart Sutra]

Well,
Sue's white blood counts are through the floor ( 1 ) after her first treatment, and she is now on antibiotics again (Levequin 500mg)

The sickness and nausea lasted 3 days. She is dreading the next round, and rightfully so. SHe feels a lot better though, and generally up and about.

[tousled1]

Kevin & Sue,

When I was on the A/C my white and red counts were always low. My white, as well as Sue's dropped to 1. I took a lot of Leviquin and it does help. Hopefully, she won't get the mouth sores. Hang in there, it does get better and as I said before after you're finished it just becomes a faint memory. My red counts (hemoglobin) continue to drop even though I'm only on Herceptin. Just had a treatment today and had to get a shot of Procrit.

[Jean]

Kevin and Sue,

Soon the worst will be behind you...when I was on chemo by the 6th day
I would feel just fine and not take my nausea meds. Just remember to
continue to take the meds even when you feel fine. It sort of sneaks
up on you. I learned to take the meds around the clock to protect myself
from getting sick. About three days after treatment I would feel beat up
and just had to lay down. Just when you are fed up with feeling so bad
you start to perk back up.

Sending you all good wishes,
Jean

[Bev]

See if they can fine tune the meds for nausea. Many of us have done emend. I think my doc also gives Ativan as a premed for AC. I know they also have THC in pill form as I asked the nurse if I could smoke pot if I was nauseated. Never needed it. I can imagine how nausea would make you feel reluctant to go to the next infusion, so I would ask them to try different meds.

Best wishes, BB

[Tessa]

Someone else mentioned acupuncture with the shading of 'weirdo', and I know how she feels - but if this is easiyl available to you, I would really recommend it. I had acupuncture during chemo (never before or since) and drank bitter Chinese tea, and it really did help. I speak for myself and for two other California friends, I have no idea how this works, but it does. All three of us had a strikingly easy time with chemo, I swam every day, and although for a while oatmeal as almost the only thing i felt like eating, there were no serious nausea or gastrointestinal problems. This was epirubicin/taxotere - my Herceptin came separately later.
Good luck, I think it will get easier,
Tessa