Holy crap this is bad - how to cope?

catlady44

I had my first A/C last Tues and my neulasta injection yesterday and I feel like the walking dead. Actually, I feel more like a breathing blob of human tissue. I can barely walk I'm so weak. I had to brush my teeth on my knees and moving the toothbrush with my hand took all the strength I had. How do you ladies get through this intact? I HATE sleeping all day because it makes me so depressed, but that's about all I can do. I'm really worried because my appetite is gone and yet I'm supposed to be eating lots of protein, etc. so I can be strong enough for surgery. How the h--- am I supposed to do that?! I have 3 more A/C's and that will end mid April with surgery planned in late May. Do you think I'll be able to gain enough weight back during that month between chemo and surgery because I'm going to lose weight whether or not I want to. I'm so stressed by all the things the docs are saying I should do because sometimes I just can't!

Sorry just venting - very rough day and it's only just begun.

debiann

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. 

ElaineTherese

I agree with debiann. Make sure you're getting enough fluids, first and foremost. There's some time to recover between doses; as you start to feel a little better, you'll eat more. I actually lost about 10 pounds on chemo, but that was because I caught a nasty stomach virus from my kids, not from the chemo itself.

As far as daily activity, you might want to set very small goals for yourself so you feel somewhat "productive." I remember doing some minor chores during chemo so I felt like I did something. "I put away a load of laundry!" Or, "I changed the sheets on one of my sons' beds!" I never pushed myself too hard; I just tried to find some small task that I could accomplish.

Beachbum1023

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.

catlady44

Thanks everyone! I know I need more water. That's part of the struggle because even water makes me feel nauseous, but I'll muscle through it like everything else. I have labs drawn before each infusion, then they send them to the doc and he gives final permission to go ahead with the chemo, so if I need fluids, etc. I guess they'l know that ahead of time. I'll definitely talk to the doc about this though. They've mentioned before the different things they may have to add to the chemo for whatever complication arises. I'm glad you all said you gained the weight back after the infusion. I suppose this is all "normal". I actually gained weight on Taxol so I have some weight I can lose. Since my diagnosis every little thing send me into panic mode. Like, if I don't get 8 hours of sleep, I'll die, etc. I'm a perfectionist and which makes me my own worst enemy.

muska

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!

Denise-G

I agree - talk to your Onc to make sure!!  My Onc told me, "Now is not the time to be a heroine.  With today's meds, there is no reason you should be nauseated or deathly sick during AC.  Call me.  I've only prescribed the tip of the iceberg for you."

That proved to be great advice.  We never want to call, but sometimes you just have to.  Also, great advice about the water and dehydration.

I used to mix cottage cheese into mashed potatoes - you couldn't taste the cottage cheese, but it helped the protein.  Also, peanut butter.  I could tolerate it.

If you can't drink, please do call your Onc!!

Trvler

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

Catlady, they will give you fluids with your infusion, but sometimes you need more a couple days later. I got mine on day 4 because thats the day things would start to go downhill for me. You feel much better after fluids. I was actually drinking plenty of water, but it wasn't going into the cells the way it should so I was still dehydrated and I felt awful. Good luck to you next round.

Trvler

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.

debiann

Thats how it was for me. I said if I need all this water why doesn't some stay inside? I got so weak I couldn't stand up and my MO sent me to the ER.  I was dehydrated and my sodium was low, all the water I was drinking was flushing it out. The ER doc had a more medical explanation about the cells but I don't remember it. The IV fluids perked me right up. After that I was automatically scheduled to go back for fluids day 4 after each treatment. In hindsight, I probably should have gone more than once and I would have felt even better.

Trvler

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?

catlady44

My sodium gets lower every week. If I feel this way tomorrow, I'm definitely calling the doc. I don't have as much nausea as the weakness and fatigue. My face, hands and feet feel tingly a lot of the time.

debiann

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.

Holeinone

cat lady, I have always referred to A/C as "legal torture". I hated every minute of it. I was sick, like you. I could not eat, sleep, was constipated. I lost 20 lbs, which Oncologist was against. My infusions were dose dense , meaning every 2 weeks.

I took a leave of absence from work, so did not have to try to juggle that. Good thing, cause it would of been impossible. So my only advice is, be selfish. Take care of you & only you. Some days my goal was to make it to 5:00. I tried hard just to get through the day, eat something healthy. I had 4 dose dense infusions of Taxol after A/C, which was no picnic, but much easier. Ask for pain meds if you are in pain. I did not get anxiety meds until I was 1/2 way through rads, should of gotten them sooner.

Rosevalley

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.

Jackbirdie

Trvler- I don't know exactly why or how they make the decision about the A in the TAC regimen. At first my onc was going to do it, then he said perhaps we'd better not, because he said I'm young (57 is young?) and he didn't feel the risk of permanent heart damage outweighed the benefits. He said if I'd been other than ER/PR+,HER-, he might have felt differently. That is, that maybe it wasn't as critical for me.In the end, he left it up to me, and I skipped it. It was a hard decision because I felt I was going the extra mile doing chemo for only a few extra % points! and now I wasn't going all the way. So I'm doing 6 treatments of TC only, 3 weeks apart.

Jackbirdie

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.,

catlady44

It's a week after the AC and I feel SO much better! Not a 100% by any means, but anything is better than last weekend. I really worked on the fluids which helped I think. I'm still pretty fatigued, but at least I can stay conscious longer and move my limbs without feeling wiped out afterwards. I lost 4 lbs in the last week, but I'm really hungry this week so I'll probably gain it back. How ironic that gaining weight is a good thing right now!

I appreciate the advice telling me I get to be selfish now! You're so right. That's what I would tell someone else going through it.

My AC is dose dense too. I am given the premeds, Decadron, pepcid, Emend and Aloxi before the chemo is infused. I take Decadron for 3 days after that as well, plus I have 3 different nausea meds for home. I think that's what's prevented the vomiting. I had some nausea, but nothing like I expected.

WinningSoFar

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.

catlady44

I am! I'm sure I have this panicked look on my face every time he sees me! He's extremely patient though and spends extra time with me whenever I want. The entire staff is very comforting and tell me to ask anything anytime.

Trvler

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.

Jackbirdie

Trvler- I did not have node involvement. My mo seems very good but it was strange that he did a bit of an about face. He did leave it up to me. I still question my decision because I have taken the aggressive fork in the road every time so far. He did say there was a tiny something on my echo, but when I pressed him, he said it was more my age and my receptor status that caused him to back off the A. I just don't know. That's the thing about this beast. Noneof us ever know.

Trvler

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?

SpecialK

trvler - if you check the sig line and see the notation - such as 0/1 nodes - like jackbirdie has, you will know if they are node positive.  That particular notation is 1 node removed, 0 had cancer.  You may see 2/5, so 5 removed, 2 with cancer, etc.  Just wanted to also note that TAC chemo is a pretty big gun - generally you will see AC-T, which is Adriamycin/Cytoxan/Taxol, or TC, which can be Taxotere/Cytoxan, or Taxotere/Carboplatin.  Generally speaking, TAC would be a regimen given for a more aggressive situation - since Taxotere has twice the potency of Taxol.  You will also see Taxol used alone in certain situations, like in combination with Herceptin for small Her2+ tumors, and given for a longer period weekly.  These drugs combinations do different things - Adriamycin (or other anthracycline type drug) is an antibiotic based drug, Taxanes are anti microtubule drugs - they attack cancer cells in different ways.  Docs will use different regimens based on a number of factors, patient age and co-morbidities, tumor size and location (skin or chest wall, etc.), nodal status, etc., and their personal experience and preference with certain regimens, and, of course, trial data and NCCN recommendations.  Deciding on use of an anthracycline type drug can be linked to hormonal receptors - as some drugs work better for ER/PR-, and whether additional drugs with cardio-toxicity will also be used, such as Herceptin.  It is important to note that none of these treatments is without the potential for temporary or permanent side effects - deciding on which drug regimen to use is a calculated risk always.  Which will do the most good, with the least harm.  Most docs will do an echocardiogram or MUGA scan before deciding on Adriamycin to assess heart health, as the cardiac damage from this drug can be permanent.  There is not a surefire way to predict who will be affected, so you play the percentages, just as your MO stated.

Anonymous

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

Special: That was VERY helpful. Thanks. Was that response about oncotypes? I had always wondered about the notation about nodes and why there were two numbers. I feel pretty sure I have at least 1 positive node if not two. But won't know until surgery. Although I am having a node biopsy on Friday per the MO's request. If that is positive, will that make a difference in some way? I was never really sure why they wanted to do that before my surgery. I am sure there is a good reason. But going to different doctors and hearing different things from them is confusing.

SpecialK

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. 

bobogirl

Poor catlady. Sending you hugs. But, lucky for you, Doctor Special K to the rescue!

Special K, you make me smile.

Trvler

Yikes on the vein thing.

SpecialK

bobo - back at ya!

trvler - that is why you need a port, I always cringe when I see someone getting A without one.