Holy crap this is bad - how to cope?

Call your mo and describe your symptoms, you may need extra fluids. Even though I drank plenty of water, my body wasn't using it right, it wasn't getting into my cells or something like that. I don't remember the exact explanation, but in the end, despite what I drank I was still dehydrated and felt very much like you describe. Getting extra IV fluids helped. Ask your MO about coming in for fluids. I hope you fell better soon. 

I would lose 7-8 pounds after each tx, but gained it back before the next round. 

Hi CatLady, I hope you feel better soon. I had AC, and it takes some doing but you will get through it. I drank 4 to 6 bottles of water every day, it helps a lot. I also dropped 6 pounds the first infusion, but it all came back. I ate a lot of Jell-O, fruit, cottage cheese, pretzels, and mac and cheese. Popsicles helped also as a liquid, and they cooled my mouth and throat. Any amount of exercise is helpful, even a short walk daily. Protein snacks will be a good way to build up after the infusion. I would eat very small snacks all day long to keep something in my stomach. I had to work during chemo, so I just had to push through it. My plan to stay ahead of the SE worked pretty well for the most part. I would call the MO and see what they can do to help.

Hi catlady44, I think you should talk to your doctor. If it's nausea that is bothering you they should be able to adjust the meds. I remember having great appetite while I was on the same chemo protocol and no nausea at all. And I worked through chemo.

Best of luck to you!

I have a question for those of you taking ACT. I might be taking that. That's what the first MO said he would give me. But I didn't like him so I am going to another doctor next week. But I have heard about heart issues with the Adriamycin. If there is a chance of that, why do they give it?

debiann: Can you say how you knew it wasn't going into the cells they way it should? I always feel like no matter how much water I drink, I just pee it right out.

That's interesting, Debiann. I will keep it in mind. Can you tell me what prompted you to get the IV's? Did you just feel like total crap and called the doctor? How did you know you were dehydrated?

A couple days after my first tx I had such a craving for something salty I had to stop at McD's for fries. I started to feel bad around day 4, called the MO who said it sounded like dehydration, keep pushing fluids. They did offer the IV but I figured why bother, I'll force myself to drink more. By day ten I was feeling good. Round 2 was the same, only I felt even worse. By round three my DH had to practically carry me into the MO's office and they wheeled me right to the ER and the conclusion was low sodium, & dehydrated. That's when he exlpained that for me pushing fluids wasn't working, I needed the IV fluids. Don't think you have to sit home and tough it out, there's help. Hope you feel better soon.

I had the same experience as Holeinone above. Horrible. Thank goodness for the drug Emend- those lovely 3 little pills and compazine after they wear off! I felt like a city bus ran over me after the neulasta shot and it took 3 days for me to feel anything but like you said- "half dead!" It so sucks, if some one said they had an easy time I don't think I would believe then since all the women I have met shook their heads and sighed awful! It's AWFUL! We know and you just need to lay low and do what ever helps you get through it, at least for the week of the treatment. They are tanking you up with fluids afterwards. Drink but not until you feel puky. Try chicken broth if your sodium is low. Ginger ale worked for me.. let it go flat.

and CatLady- I'm so very sorry you feel so bad right now. It does seem as though some get hit early and some get hit late. There's a Very good chance you won't feel like this during the whole course of chemo.

And learning to live in the moment is something we all know we should do, but it is an acquired skill. Don't be too hard on yourself. You are going through so much. In such a short period of time. A little wallowing is in order sometimes. As you start to feel even a teensy bit better you will rejoice for a second when the sun hits your face. Or you see a pretty flower. You learn to build on very small things. You can do this. You will do it.,

Dear catlady--your first week is hell week, that's for sure. Your reaction is so much worse than anything I experienced (not that I'm the only person to be compared to--lol) that I hope you are nagging your oncologist to alleviate your symptoms.

Jackbirdie: I went to a new MO yesterday and I asked about the heart thing. She said 'It's only in 4% of patients'. Honestly, that kind of dismissive response makes me angry. Did you have node involvement? I am wondering why it was ok for you not to have it compared to people who do have it.

Katy: Well, I guess that makes sense. Although I am still not that familiar with oncotype. In fact, it has rarely even been mentioned to me. What contributes to a higher oncotype score? Do you know? Or can anyone answer that?

Trvlr, and I echo SpecialK--adriamycin is seen by many MOs as the gold standard to knock little c off its crappy little tracks for good. I had a MUGA scan to make sure my heart was okay; the scan was so easy and short. I lost 12 lbs during AC, didn't gain back all of it for months after tx ended, but it's all back now. Luckily I didn't gain any weight with chemo. I had no appetite; hypersensitive sense of smell also caused more loss of appetite. Good luck to all of you.

trvler - it was actually about chemo choices and your question to jackbirdie about why her MO indicated that Adriamycin was not mandatory for her, and why TAC could conceivably be overtreating for her situation.

Regarding Oncotype Dx - it is a test most early stage ER+, Her2- patients have if their oncologists are not convinced that chemo is a given.  It is a genetic assay of your tumor sample that is meant to indicate whether chemo would be beneficial when added to hormonal therapy.  Generally speaking, more aggressive grade and Ki67% follow with a more aggressive genetic profile, and may drive the score higher.  Not all oncologists with node positive patients will request an Onctoype Dx as there is less data for this subset, and chemo is more likely to be recommended.

If there is some thought that you will have neoadjuvent chemo your MO may want a node biopsy prior to starting.  The reason for this is to accurately stage you - if you don't have a clear picture of nodal status, have chemo, then surgery - you may never know if you were node positive or not.  The number and size of nodes helps your MO guide your treatment.  I personally think it is a good idea to do it - I have a Triple Negative friend who had her port placed, and I suggested that she have her SNB during that surgery, and she was relieved to know in advance that she was node negative.  The possible complication is that once you start chemo there may be inhibited healing so if you do have SNB watch your incision carefully.  This is also true for the port incision if you have one.  If your MO is thinking of using Adriamycin I would advise one as this drug is a vesicant, and can burn and blister the skin and ruin the veins in your arm. 

Yikes on the vein thing.