June 2011 A/C & T Groupies Unite!

LuvRVing · July 2011

Hi everyone! Hope you all had a nice weekend with minimal SE's.

Kat - congrats on finishing AC #4, I am going to hit that milestone on Wednesday. Then on to Taxol, and I sure hope it's as easy as everyone tells us! Actually, I have been extremely fortunate that I have been able to do almost anything I want most of the time during these chemo treatments. I made a blog entry that some of you may like, you can read it at

www.mch-breastcancer.blogspot.com

Maybe it will help someone.

Good luck to everyone this week!

Michelle

716bobbiejo · July 2011

I'm really starting to feel anxious about starting A/C on Thursday. Aside from being well hydrated, which is my norm anyway, what can I do to help with SEs? What do I need to have on hand, ladies? I already have my Emend for this time, my Claritin, & my stool softener.

Are any of you struggling with nausea & if so, does it seem to get worse with each treatment? I was given a bag of all natural crystallized ginger from a friend who walked our path last year. I haven't eaten any of it yet, so I don't know whether or not I can stomach it, but I do know that ginger is supposed to help alleviate nausea.

If you haven't found the nausea to be cumulative, have you found any of the SEs (besides the fatigue) to be cumulative?

I've been reading the thread several times each day, but posting very little. I'm very tired from chasing my 4 year old all day long! :0)

Thanks for your input, ladies.

Southamptonmom · July 2011

I start senna-s day 1 of chemo, and take it twice a day for 4 days. Day 1 I take emend at chemo. Day 2, and 3, I take Emend and 2 mg of decadron at the same tiime I took it on day 1. (many people take 4 mg of decadron twice a day~I have reflux, and I couldn't do it) Day 1 and most of day 2, I feel pretty good. They give me IV aloxi and decadron before the AC to help with the nausea. Evening of Day 2, I take compazine and ativan. Day 3 I alternate Zofran 8mg, Compazine 10 mg, and Ativan 0.5mg, without any regards to the time I take the emend. I continue that for day 4, then back off the ativan and compazine on day 5. I usually stick with the zofran day 5 and 6 with only taking ativan or compazine at bedtime if I need to. I usually feel better by day 6. That's my experience. It's all doable, just don't plan anything until you know how you feel. My kids are 11 and 12, and they've been so wonderful. Do you have help with your 4 year old? When you get a chance, can you tell us about Taxol? I'll be getting Taxol/Herceptin starting August 11th. My last AC is Thursday. First one was the worst and think it was because I wasn't prepared, and I was still in shock mode. Second one was better. Third was was a little worse than the second, and I was soooo tired. I had a lot of heart pounding with just changing my clothes and walking up stairs, that went away in less than a week. My legs were very weak. Feel great today.

716bobbiejo · July 2011

Rose,

I think I recall that you're an RN, is that correct? I do not get Compazine, Ativan, or Zofran right now. Are those all anti-nausea drugs? Should I ask my doc to prescribe them in addition to the Emend? It sounds like the Emend is not a "stand alone" nausea drug when it comes to A/C??? That & the Aloxi during infusion are the only nausea drugs I'm taking with Taxol.

I have found that I'm pretty good with the Taxol on days 1 & 2 as well. It's days 3-5 that are the hardest as far as fatigue & joint "pain" go. (Not really pain, but more of a dull ache.) I did post my Taxol experience a bit further back in this thread. I'll find it & repost it for you.

What about the heart pounding? Is that a common SE of A/C? That must be an awful feeling. I've had a bit of tightness in my chest since Friday & some low back pain when I sit. Nothing severe, just noticeable.

I do have help with my son on the days that I really need it. I get my infusions on Thursdays, so by the time the weekend rolls around & I'm feeling wiped out, my husband is home to help out. I usually try to send him to his grandparents or with a friend on Mondays following treatment as well.

Thanks, Rose.

Southamptonmom · July 2011

I am an RN. I would ask for prescriptions. Compazine and zofran are for nausea, decadron boosts anti-nausea medicine's effect. Ativan is similar to xanax or valium, but has anti-nausea properties. Senna-s has a little more umph than just a stool softner. Do you sleep days 3-5 most of the day. I would say I slept 18 to 24 hours a pop with only getting up to drink and pee.

Thursdays are perfect for chemo (sounds funny), my husband is home for the worst part. Are you getting neulasta injections? The chest and low back pain are similar to the pain I get from the neulasta.

716bobbiejo · July 2011

Reposting my Taxol experience WITH ADDITIONS/EDITS:Judging by what everyone else on here is going through & comparing it to my Taxol situation, I'd say that Taxol is easier than A/C. My first treatment was the worst, largely due to the anxiety brought on by fear of the unknown. I had a horrible time with sleeplessness & constipation the first round, which my doctor attributed to the steroids. Rounds 2, 3, & 4 were essentially uneventful for me. I got the constipation in check by using a stool softener the night before & the night of my infusions. That coupled with a daily probiotic, & constipation has no longer been an issue. I'm also eating a lot of Fiber One products. I take Ambien for sleep the night of an infusion & for the following 3-4 nights. I refuse to take it any longer than 4-5 nights in any one stretch because it is habit forming. Taxol can cause bone pain & neuropathy. I've had no neuropathy, but have had some very, very minor bone pain in my legs & knees. I'd even call it more bone & joint discomfort than pain.The fatigue is definitely getting more predominant each time & that is my biggest "complaint". Although, here I am today, 12 days out of my last Taxol, & I'd have to say that my level of fatigue is no more than any busy mom with little ones! It's days 3-5 or even 6 that I feel the most tired, then it wanes off to what I would consider to be "normal tired". I'm also sleeping through the night now without the use of any sleeping aid. I do get up to use the bathroom, but I don't struggle to return to sleep like I do the first 5-6 days after the infusion. For the first few nights after an infusion, my normal wake up time is between 3:30 - 4:30. I just simply can't get back to sleep even though I've taken the Ambien. I also try not to nap during the day thinking that will help me sleep at night. I do occasionally give into a nap, but I rarely rest longer than 30-40 minutes, & I try to do it early on in the day.With Taxol I've had zero nausea, heartburn, mouth sores, metal taste, etc. I've been able to eat & drink anything I've wanted, with the exception of coffee. I can't tolerate that the first 3-4 days, but then the taste for it returns & I'm able to enjoy it again until my next infusion.I also keep very hydrated by drinking between 80-100 ozs. of lemon infused water each day (I've always been a big H20 drinker). So, I'd say that Taxol is easier than A/C with very few & very manageable SE's. It's very doable. If you all respond to Taxol as well as I have, you've got a downward slope once you're done with your A/C. Have a great, SE-free day everyone!

716bobbiejo · July 2011

Rose,

Yes, I do get Neulasta & hadn't even considered that it might be the culprit for the chest & low back pain. Makes sense.

I feel like if I ask for Compazine & Zofran that my doctor will look at me like I'm a prescription junky! Wink Is it standard of care to have multiple anti-nausea meds? Will the Emend alone not be effective against the A/C?

716bobbiejo · July 2011

I'm not sure why some of my posts are in gray italics! My Taxol post I cut & pasted, so that I can understand. But my post to Rose was all typed, yet my last two sentences came out in gray italics. Weird!

ssmith37 · July 2011

Hi Bobbie Jo. I don't think you need to feel anxious about A/C. It sounds like the side effects you have experienced from Taxol have probably prepared you. I've only just had my second A/C infusion on Thursday, but wanted to let you know what I've experienced. The main thing that gets me is the fatigue. I am so tired of being tired! It seems like I'm up for 2 hours, then down for at least 4. My body feels weak. I also have the heart-pounding, but probably related to my mitral valve prolapse because I have had to deal with that most of my life. It is more difficult on the A/C though. After the first infusion, the heartburn and nausea were relentless! It was so disgusting, but through it all, I did not vomit once! The meds they gave me were Emend, Zofran, Prochlorperazine and Ativan, plus the steroid, Dexamethasone. The Emend I only take for 3 days. The steroid for 4. On my first infusion, I took all of the meds religiously. But then I realized how out of it I was and my sister and I read up on the side effects. I'll let you do that if you so choose. Needless to say, I'm not one to take any meds on a regular basis other than what is necessary, so I decided this time to only take the Emend. I have felt much, much better. I have not had to deal with the miserable heartburn that alone was causing nausea, and I did not suffer the agonizing headache caused by the Zofran. I guess there is no real solution to the fatigue, so I'll just sleep that off. They say to get up and walk, but I can't find the energy to do that. Maybe next time.

I hope this helps. I'll post more on how I'm doing without the anti-nausea meds.

P.S. Take the Senna, lol!

LuvRVing · July 2011

Bobbie Jo - I have not found the nausea to be cumulative. I have found the "indigestion" to be a bit more each time. I'm taking generic Prilosec (omeprazole) and that seems to keep the worst of it at bay. I will take an occasional Tums when I need a bit of extra help. I have also found that my esophagus has gotten more irritated each time. So spicy foods are out for now, and I can tolerate fizzy and highly acid stuff much less than during the first few treatments. I'm using low sugar fruit drinks and then adding a little seltzer or diet sprite to get a bit of carbonation without overdoing it. I was troubled with mouth sores after the first week of the first treatment. My onc gave me an Rx for Valtrex and that has worked.

The nausea resembles what I remember as morning sickness. I find if I eat something when I get that "angry stomach" feeling, I feel better. So small frequent meals is the key for me. You'll get plenty of anti-nausea meds and you should use them to stay "ahead" of any nausea. With 3 treatments under my belt, I've vomited just one time, and it was in response to the smell of charcoal fluid lighter. Oh yes, smells are accentuated right now. The smell of the seafood section of the grocery store was overwhelming last week. I hurried past the area and was mostly OK, except that I could smell odors on a few people as we passed in the aisle. It was bizarre because I don't usually notice such things. It was 100 degress, so maybe it was just a normal thing. But smells are definitely a trigger these days.

All these things are somewhat manageable, and are not keeping me from doing pretty much anything I want to do. We have been able to go out to dinner on the Friday night after my Wednesday treatment. I may not eat as much, but we are able to do what we always do - go out to dinner - and I am not sitting there wishing I were home.

You'll probably do much better than you think!

Hugs,

Michelle

Ralsper · July 2011

BUT I DID EVERYTHING THE TOLD ME...716bobbiejo I did not have to ask my doctor, one week before my first AC, she prescribed 8mg of Decadron and 8mg of Zofran twice a day x 3 days after chemo, plus .5mg of Compazine and .5mg of Ativan every 6 hrs. as needed for nausea. I asked my doctor what would happen if I didn't take them and she said "you will get nausea". Well, I decided to keep on top of my meds and I drank tons of water the days before chemo and during chemo. I was so sure that I will not have any nausea that I did not even consider the possibility of what to do if... Anyway, Day 1 they gave me IV Decadron and Ativan before AC to help with the nausea and right after they removed the IV I was already vomiting on the treatment room, the parking lot, and all night in my house. What went wrong? I keep trying to take Zofran and Compazine, but they went out with all the water I drank. Next day, I managed to take 2 Aleve (gel caps) before my Neulasta shot and as soon as I arrived they gave me IV saline to hydrate me and IV Decadron and Ativan again. Finally, we were able to control the nausea, they gave my Neulasta shot and I just took 2 more Aleve 8 hrs. later. I slept the rest of the day, but I did not have any pain. Day 3, I took .5mg of Compazine, big mistake, it made me fall sleep everywhere. I have not taken anything since then and I am happy to report that I realize that I was sleepy and tired because of the Decadron, Ativan and Compazine and not because of the AC. Since Day 4 I have plenty of energy, but they are some foods that I cannot even imagine, so I stick with the thing that I crave and in small portions. I have been told that for my second AC I will be given Emend, so I will report the results as soon as I have this "new experience". Oh, mistake, I ate a cracker and I cut my palate, definitely stick with soft food and brush your teeth 3 times a day and use Biotine mouthwash, it really works to prevent and heal mouth sores.

LuvRVing · July 2011

Oh Ralston, you poor dear!!! I have been given Emend for every treatment, and I have used the Scopolamine patch in addition to all the other anti-nausea drugs. I have not had nearly as much decadron as you - just 6 mg as part of the pre-treatment an hour before the Adriamycin is pushed. And my Ativan and Compazine are "as needed" and I've only taken a couple of each. I get Aloxi by IV as a pre-med, maybe you could ask about that.

By the way, CVS has a store brand of Biotene and ACT also has a similar concoction - both alcohol-free. The Biotene is very pricey and I'm finding these alternatives work very well.

Michelle

wendy72 · July 2011

BobbieJo,

I did not find the effects of the A/C treatments cumulative. My first one I had nausea, felt bad and slept on and off for 3 days and then started feeling better. My second one I had hardly any SEs just a little nausea. My third one I had the extremely rapid heartbeat and did not stop being sick. I was hospitalized and we decided I would not receive my fourth A/C. I received Emend and Decadron before the A and C infusions and was prescribed zofran, and fenergan. I am taking a probiotic daily and use biotene toothpaste and I like the gum as well. I could not drink lemonade or sodas because my throat was irritated but I like water for the most part anyway. I found that eating crackers or anything of that nature hurt my mouth so I just did eat anything like that.

For everyone that will be receiving the 12 weekly Taxols;

I had my first Taxol on Thursday and was tired and jittery the day of tx and the day after. day 3 and on I have felt better and better each day. I have had no nausea at all. I have had some constipation for the first couple of days after treatment. I receive emend, benadryl, pepcid, and decadron before the taxol infusion. So far this is much better than the A/C treatments!

Good Luck to All!!

cider8 · July 2011

For me, I do find a degree of cumulative fatigue. My 4th AC was a week ago. I definitely haven't been able to do what I want to do going through treatment. My anemia has increased with each treatment. My last hemoglobin count was 9.9. Fortunately, I'm done w/AC so counts should be going back up. For pretty much a whole week I feel very weak and fatigued. I do get the racing heart, for a few days, just to get up to eat! Now, I get worn out just running to the grocery store. I tried doing some regular stuff on my last day before infusion, and it set me back. I do feel some guilt about the kiddos (age 7 and 10) not getting out and doing the fun summer stuff. But I know they'll be fine, as this is just one summer. They spend a few nights at my sister's or mom's house during the worst of it. I have a hard time with the liquids. I feel like there is a bubble in my throat, like there is some acid reflux that wants to show up, but never does. I'm guessing it's irritation, and it is keeping me from staying hydrated enough. Food doesn't bother me, makes me feel better. But swallowing the liquids....ugh. I keep trying combos and concoctions to get anything in me. I've got some coconut water to try next! I am also finding that my belly is bloated from chemo. AND, quite irritating mentally, is that I have some sort of period each round! I've always had wacked out period cycles, but never found any problems. My onc said the fluctuation in hormones must be triggering me and not to worry.

Bobbi Jo, you've already been able to know what chemo is like, so at least you don't have to start out AC with complete unknown. You know your SEs will be what they will be. I wish my SEs were better, but they aren't. What's getting me through is knowing it's temporary and there is an end date. I mean, can you believe the first half is over already?! Four months sounded like such a long time when I first heard. When I feel bad physically, my spirits get lower. I count that as a side effect and I can recognize it and remind myself it will get better. You can do it! One day at a time.

Southamptonmom · July 2011

Hope today is an easy last AC Michelle!!! Wishing minimal SE for everyone. Beautiful day here in suburban Philly! Goind to try to enjoy it!

LuvRVing · July 2011

Thanks, Rose! I'll be glad to be finished with this part of the journey.

I've been having problems with my favorite beverages, too, because of the esophagus irritation. So I am experimenting with mixing things, like diet cranberry with a bit of Sprite Zero. I get just a little fizz which satisfies my love of carbonated beverages when I can't take it full-strength. And don't forget juicy fruits like grapes, melons, etc. Those are not acidy, go down easy, and they count as hydration. I've been eating watermelon the last couple of weeks and I have to say, it never tasted so good!

And now, for your amusement, here is a picture of me with my "not quite bald" head. I figured it was time to start taking pictures because when this is done, we'll all be looking for hair growth spurts.

From Chemo - hair" mce_src="

I seem to be covered in white "chemo hair" with a little leftover darker gray hair on top. I wonder if it will grow on Taxol.

Michelle

LuvRVing · July 2011

Well, not having that Neulasta shot after my last treatment hasn't worked out so well. I got to the center, they drew blood and my WBC is 1.2. Doesn't that just suck??? Plus, they had messed up and didn't have me down for getting treatment today, so we worked that out, the nurse accessed my port and drew blood, then the results came back and yup, no AC for me. Will have to pass that halfway point next week.

Bummer, was looking forward to this part being done!!!

Michelle

Southamptonmom · July 2011

I'm so sorry. Will you be able to go back next week to check your counts and maybe get that last AC in? I have a funny feeling about my WBCs. I've been exhausted.

LuvRVing · July 2011

Rose - yes, the plan is to try again next Wednesday. They seemed confident that my WBC would recover on its own. Most people who are on the every 3 week plan don't need Neulasta, so I should be fine next week. This took everyone by surprise, though, and makes me wonder if there was a mistake in my labs last time. Do you get copies of all your labs? If so, compare your RED blood cell counts from previous labs and see if they are going down. I don't think the WBC gives you fatigue, but low RBC definitely does - it's basically anemia. So eat some proteins, spinach, and other high-iron foods to help with the low energy. Mine was low before I started treatment, but I must live in the low zone normally because I've noticed just a little extra fatigue. My reds were down, too. But not so much that I would need a transfusion or any kind of treatment. I've really, really been trying to push proteins and high iron foods.

Michelle

Ralsper · July 2011

Michelle, I am really sorry. Why didn't you have the Neulasta shot after your last treatment?

LuvRVing · July 2011

Ralston - when they ran labs before my last treatment, my white count was double the high range (22) so they couldn't give it to me. I've been doing so well that this caught everyone off guard.

Michelle

FGCUfan · July 2011

Michelle, my last WBC before my treatment was 27,000 but I still got the Neulasta & it was a good thing because 4 days later it was down to 700. In the next 3 days it was back up to 12,000. Go figure!

Bobbie Jo, I'm also an RN and you can see by everyones SEs, they are as individual as we are. My 1st tx. was a snap--no SEs at all; 2nd was a trip to hell & back, however I don't blame all of that on the chemo. It was a Chinese firedrill from the time we arrived at the Center until we left 9 hours later. There was certainly a degree of "operator error" on that tx. 3.5 days later I could finally eat a frozen pop, then I was off to the races & no more issues. 3rd tx. I was just tired, slept for 2 days straight except for meals & potty trips. The only culmulative effect I've noted is the fatigue, but I had fatigue problems before the chemo due to my Fibromyralgia so I think that intensifies mine a little. My food issues seem to run contrary to the others, if it isn't highly spiced I don't want it & have trouble tasting it. No indigestion but since that has been an issue in the past I take Prilosec. I take a Zofran 8mg the night before chemo & the morning of & that night, it is a Seritonin blocker & is used like Emend to prevent nausea . I take Ativan 1mg the night before the treatment & the same the morning of. I take the Emend 125mg the morning of the chemo, if the WBC is ok to get the tx. then Emend 80mg the next 2 mornings. I also get Aloxi .25mg IV, Decadron 20mg IV, Ativan IV before each treatment. It worked well for tx 3 & I'm looking forward to #4 next week and don't anticipate any problems!

Went to the grocery store today & noticed that smells were everywhere. How did so many people get such bad B.O. suddenly? Seafood & meat department were a rush through as was the floral & detergent aisles. Smokers everwhere I went & that's a smell that really makes me want to yell at someone-----"You STINK" , but I was nice & moved quickly away. Trying soooo hard to be a nice lady, for a change!

Love, luck, laughter, peace, prayers, & little SEs to all,

Suzanne

LuvRVing · July 2011

Suzanne - I noticed the exact same thing when I went food shopping last week. I couldn't get out of there fast enough. I've been sending DH the last couple of times. Interesting about Neulasta and your WBC, I guess they should have just given it to me. Oh well, there are no do-overs, so I'll just deal with it. Wow, you get a ton of pre-meds! Glad it works for you!

Michelle

Ralsper · July 2011

AT WHAT POINT AFTER YOUR FIRST A/C TREATMENT HAD YOU LOST ALMOST 70% OF YOUR HAIR? How long did it take you to became totally bald? Would you amazing courageus woman be so kind and share your "hair journey" with me during ACT? Thanks!

LuvRVing · July 2011

Ralston - my hair started to go around day 16-17 after my first AC treatment. I don't know if you can tell from my picture above, but I am not totally bald, I did lose more than 70% of my hair. I now have white chemo hair fuzz and a bit of my own hair on the top of my head. My DH buzzed me down to about 1/4 inch on day 17 because it was coming out and I didn't want to find hair everywhere. At this point I don't think I'll be totally bald, but you never know.

Michelle

Southamptonmom · July 2011

I'm right with Michelle I have lost about 80% of my hair, and going for AC #4 today. Can't wait until next week when I come out of the dark and living again. (((HUGS))) to everyone!

cider8 · July 2011

My hair did start falling out day 14, so I had my sister buzz it all less than an inch. A couple days later my husband buzzed it very short, about 1/4 inch, 1/8 inch. My hair kept falling out, but I couldn't say the rate. It came out in male patterned balding! I'd rub my scalp in the shower and notice it coming out. I'd say it's at least 80% gone now. I don't have any of the white chemo hair. My scalp did hurt as it was coming out. I wonder if cutting it so short caused some of the irriration; it's like tiny little pins. I don't know if I could have taken longer hairs coming, though.

I'm on the upswing of AC #4. I feel almost among the living. What a day when I can make some phone calls and do some laundry! One thing I don't like is when I do move about, I sweat. It's just doesn't seem right to start sweating when I do a few dishes or put some clothes away. I don't know if it's the weakness of chemo or the hormonal surpression. It is what it is.

My sense of smell has always been pretty keen. I'd already been using unscented laundry and cleaning stuff. Since my surgery, a month before chemo, it's been really sensitive. I had to get rid of scented bar soaps and told my husband he couldn't use scented deo anymore. I had the hardest time with my own BO after surgery. I'm assuming it was the anesthesia in my system; I just couldn't get rid of it or prevent it from coming back asap. Can't exactly run away from yourself! Finally someone suggested using milk of magnesia on my pits and it worked! I think I'm going to have a hard time with smell association after this is over.

Michele, sorry to hear you have to delay treatment one week. You've been doing so well with SEs.

716bobbiejo · July 2011

Michelle, Sorry to hear your news. You wondered if your hair will grow on Taxol. Well, mine started falling out on day 13, so I buzzed it. I did go completely bald in some spots, but not all over. I have peach fuzz on most of my head. However, I now have about 25-30 long hairs that seem to have come out of nowhere. They are about 1/4" longer than the rest. It looks pretty strange, but I'm not vain, so I could care less how it looks to others! :0) I'm wondering if they will fall out before or right around my second A/C???

716bobbiejo · July 2011

I just finished my first A/C. I survived! I don't really feel nauseous, but I don't feel perfectly normal, either. Just blah. And tired. And my pee is already red! Do you ladies think I should get someone to help me with my son tomorrow & Monday? (Daddy will be home over the weekend.)

I asked 4 different times if I shouldn't be getting some other anti-nausea meds, & I was told that the Aloxi, Amend, & Decadron should be all I'll need. I'm a bit nervous because the rest of you seem to be getting other meds at home. I was told that the Aloxi stays in your system for 5 days, so that's why they don't prescribe anything else (other than the Amend & Decadron). So, we'll see. If I start getting sick, you can bet their telephone will be ringing!

LuvRVing · July 2011

BobbieJo - congrats on completing AC #1. I always feel a bit off the day of treatment, then just a bit off the next couple of days. Decadron also helps with nausea, you probably got way more than I did.(6 mg). So let's just assume you will be just fine. If not, you know who to call! The more you drink, the sooner the red devil leaves your system. I am usually finished with red pee by the time I get home from chemo. Drink girl, drink!!!

I guess I won't anticipate any miraculous hair growth while on Taxol. The PA told me they don't even give much in the way of anti-nausea meds because you "don't get nausea" with Taxol. So I want to hear from all of you who are doing it first...I seem to remember that there was some nausea reported. Not looking for trouble, but I want to be armed with info in case that's not exactly right!

Took my mom to the beach today, it was very lovely. And I ate steamers to bump up my iron. This morning I had eggs, sausage and cantaloupe to help out my white cells. I don't want another delay!

Michelle

June 2011 A/C & T Groupies Unite!

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