Starting Chemo in May 07

Hey girls,

Just curious--has anybody started to experience any "chemo brain"? I'm definitely starting to notice a decrease in my short-term memory. For instance, I'll be web-surfing, and think, "Oh YEAH, I need to look such-and-such up". Then I'll go open a new browser and put my cursor in the address window and have NO idea what website it was that I wanted to look at. I have to sit and THINK for a good while before it comes back to me. Granted, this type of thing certainly happened from time to time pre-chemo, but I notice a definite increase.

On a related note, I've realized that when I'm on the anti-nausea stuff, especially Marinol, I can forget entire conversations or events. I had somebody come up to me today to ask how I liked the CD they gave me, and I had NO recollection of having received it. I looked in my purse, and sure enough, there it was in a side pocket where I had apparently put it a few weeks ago when they gave it to me. Yikes. NOT a good feeling! I've had other incidents like this, but I'm pretty sure they are a direct result of the anti-nausea stuff (probably especially Marinol) and not from the chemo.

Just curious if anybody else has noticed anything.

Amy

CindyMN, that's a perfect example!! I feel like such a dork, groping for words while people stare at me, waiting for something really exciting to come out of my mouth. Oops, oh well, it wasn't exciting, I just couldn't spit it out!! ACK!

Amy

Hi ladies,
I'm just checking in for some help...I'm on the June/July chemo tread. Had first tx A/C Friday and ended up in the ER Friday night for fluids and IV anti-naseau. The nurse said to request supositories next time, has anyone had these? They had given me Emend and Compazine to take on schedule and the Lorazipam (sorry about sp here) and some other drug to take as needed. I didn't make it 4 hours out of treatment and started taking the as needed and the vomiting started about an hour after that. I know when I went to the ER they gave me something that started with a Z and this along with the Lorazipam knocked me out for 5 min and when I woke up,I wasn't heaving like I was. I've lost 6 lbs since Friday and the thought of any food just gags me. I'v gotten a few bites of applesauce down and a few potatoes. I'm planning on taking saltines today to work but gosh, I never imagined it would be this bad for me. Does it get worse every tx? I'd welcome any suggestions from you that have recently been there.
Thanks much,
Hugs,
Susan

Susan - you probably were given Zofran. I'd take that instead of compazine any day. I take Kytril 2X day for nausea,have throughout chemo, though not on the days with Emend. Have you called your onc? He/she should be able to prescribe something better than compazine. Compazine had weird throat-tightening side effects for me so I'm not a big fan.

Still queasy on taxol, not as bad.

Taxol has more pain, but more brain too....haha...dumb rhyme, ok, I'm easily pleased these days.:)

Susan,

You have definitely come to the right place to find somebody who understands what you've been through! Briefly, here's my story so far:

Tx 1--had Aloxi in my IV before chemo, took Ativan and Compazine on a scheduled basis afterwards, and Decadron for 3 days. Near the beginning of treatment I started getting a huge headache. About 4 hours after tx I started to feel nauseated, and about 8 hours after threw up 4 times in a row. Two hours after that threw up four more times in a row, and called the onc-on-call. She said "Go to the ER!" so I did. They gave me fluids and Phenergan, plus morphine for my headache. Next day I went back to the onc's office for more fluids and more Phenergan, but still had the HUGE headache. They gave me morphine again and it didn't touch it. They gave me a 2nd shot of morphine and it STILL didn't touch it, so then they gave me Imitrex and it went away FAST. My onc thinks it was the Aloxi that gave it to me. I started to feel generally better about 5-6 days after treatment.

Tx 2--This time we started with Kytril in the IV, instead of Aloxi, and I took Emend, Compazine, Ativan and decadron. No headache this time, but still started throwing up about 8 hours afterwards. After 8 throw-ups I went to the ER again, at the onc-on-call's request. This time they gave me Zofran in the IV (I'm sure that's what they gave you too) along with fluids. WEnt back to the onc's office the next day and was given a pump, attached to my port, that dripped in anti-nausea meds every half-hour, with the option of pressing a button and getting more if I wanted it. I had that on until 5 days after tx, when they took it off. I felt worse after that, but didn't throw up. I just had to take a lot of oral meds. FINALLY started to feel better on the evening of tx day 8. By the way, Zofran gave me headache too, so I haven't used it since then.

Tx3--All meds were the same, except they put the pump on right from the beginning AND I took Marinol (otherwise known as synthetic marijuana). I also went back the next day for fluids. I never threw up, but I also slept for basically 3 days straight and have almost no memory of those 3 days. YUCK! Hated that! Took the pump off on day 6 and felt worse, but was ready to be done with the stupid thing (can't take a bath with it on, and you have to carry it everywhere you go). But, this looks like the way we're going to do it from now on, since I managed to stay out of the ER this time. Again, it took until the night of tx day 8 to start feeling better again.

Next time we're going to add scopolamine patches to see if they help, and I'm going to have IV fluids both the day after chemo and on tx day 3 (Saturday) at my home through the pump. The Optioncare people who provide the pump can give you fluids through that at your house, so that's how I'll do it.

So, I guess the main thing I'd say is, talk to your onc about it. They always have more things they can try. I would ask about the pump, and about Marinol or any other meds they'd like you to try. The bad news is, if this was your reaction the first time, it's likely that you'll have trouble with nausea every time. Lucky you! I'm told that only 2% of people end up using a pump. But hey, if that's what you need, then that's what you need. It's a pain in the neck, but if it keeps you out of the ER that's better. As far as getting worse every time, I don't think your nausea will get worse, but your ability to recover may take a little longer each time. I'm finding that to be the case, pretty much. I eat almost nothing for those first 8 days--maybe a few saltines, or a small bowl of soup, or some jello. Basically, if anything sounds remotely "good" I try to eat it. Often I think I might like to eat something, and then I take a bite and decide it's gross. But my onc says it's OK to lose weight for a week and then put it back on before the next treatment. The good news is, I've always had a "turnaround" point when my appetite returns and I'm RAVENOUSLY hungry. So regaining the weight is no problem. And it's a lot of fun to eat once you stop feeling nauseated.

Have you been feeling really wiped out/exhausted too, or just the nausea? I was marveling that you said you were headed to work, because I'm not able to do anything for the first 5-6 days after treatment. After that I can do a LITTLE but not much, until I hit that "turnaround" and start to feel better quickly. I'm a stay-at-home mom, and I basically have had to have all-day care for my kids (ages 2 and 4) for the full week after treatment. I've tried to get by with less than that and find that I just can't do it. I pretty much lie in bed for the week, and surf the web or watch DVDs on my computer, lying on my side. Not enough concentration to read, that's for sure.

Will you see your onc before your next treatment? Or just on the day of? I'm surprised they didn't have you in to the office the day after you spent the night in the ER--or did they? If you're not scheduled to see him/her before your next chemo, I'd maybe call and see if you can have an appointment to talk about how this first one went and what can be done differently next time.

I totally feel for you, Susan! I'm having FEC, by the way, similar to AC in this area of nausea and vomiting. Feel free to keep posting with us, if you want to. And let me know if you have more questions. I may not have answers, but I can at least comiserate! (sp?)

Amy

Good for you Liz - your last A/C!!!!
I know what you mean about the running! I am still doing it but I am S-L-O-W!! I now run for 4 mintues and walk for 1. I am at 34 mintues for a 5km - that's slow even for me - I am usualy around 29 or 30 minutes!! Oh well, I am getting out there faithfully! (Except for the first few days after tx when I usually feel like krap!)

I think the lack of postings is a good sign - maybe that means everyone is doing so well that they don't NEED support!? Hope so. Or maybe lots of people are on vacation?

I had wicked nausea last night - which is strange because it is day 8 after tx! I have noticed a low grade nausea that seems to always be here - especially if my stomach is empty (and I wonder why I've gained so much weight!!) Oh well, "just keep swimming" I guess (Dory from Finding Nemo)

Hope everyone is well!
Mandy

Same here.....I am forgetting names mostly, but seem foggy most of the time. I read that it could be chemo brain or it could also be the fact that they are depleting our estrogen so quickly with the chemo. Does anyone know if it goes away after chemo?

Hi all,

My last A/C has been a BEEEEEOTCH! Nearly a full week of draining fatigue and a more depressed mental state than I've had, really since this all started. I just HATE feeling so debilitated. I am a little panicked about the cumulative fatigue factor... if it continues to get worse with each tx I will be on the couch full time before it ends (I have 4 more)and that can't happen! I have to keep working so I can keep on getting my salary. I just do. I don't work a full day, but I manage to keep the work flowing and on a good day I'm there 6 hours but last week I had a few days where I could only make it for 2... ack!

I'm nervous about Taxol just because I don't know what to expect. I get that on Thursday.

As far as nausea, I have a sore stomach every single day and have since chemo started. If I take a Prilosec AND a Zantac together it really takes that soreness (which is too much acid) away. Helps me anyway.

We've had hot weather here and I up and decided I wasn't going to cover my head anymore so that's been something new. Guess what? No one really notices. Or cares! My bosses did a double take the first day but that's it. I'll tell you, it's a heck of a lot easier AND cooler this way.

Keep on writing everyone. I've been missing it. If I am quiet it's because I'm feeling sick or bummed out.

Hugs,
LeeAnne

I'm on Day 9 after my 4th A/C. I think that I might be a little better this morning. I ate two small bowls of cereal.

The nausea is mild, but always there. The fatigue is crazy. Plus I got pretty bummed out for a day or so, which is not like me. It is just hard being sick and so tired all the time.

I try to accomplish at least one thing a day. Today I want to straighten up the house and wash the kitchen counters. The family is good about loading the dishwasher, but never wash the counters.

My husband had to bring in my bird feeders today because there was a young bear out there early this morning. We had a different bear awhile ago, but that one left and I thought it was safe to go back to feeding the birds and squirrels, but guess not.

Pat

LeeAnne, sorry you've had such a hard time - at least the good news is that you're done with A/C! Woohoo!! And kudos to you for going topless Yep, someone told me that in Seattle on Capital Hill being bald is no big deal at all, and yes, a fashion statement in the younger crowd. Now, if only I was part of that crowd, right? Hah! Not. Maybe 20 yrs ago, not now.

secret confession - i get so nervous before each round of chemo, and have this drive to take care of everything I can before hand as if I'm secretly scared that I won't come back? so far, so good for me....the SEs go away, I've gotten through each chemo fine. Felt better on taxol actually. however, the taxol allergic-reaction possibility scares me. So, I will be taking those dexamethasone tonight, 5 at 11 ish and 5 at 5 am ish....and last time I did sleep so if it's not too danged hot and humid I will again....

Hugs to you all,

Hi everyone,

My oncologist is recommending that I have my mastectomy after 4 cycles of A/C IF my mri shows that the tumor is significantly reduced from the a/c. I would have to continue with 4 more cycles of Taxol after my surgery if I do this. My surgeon, on the other hand, is saying I should have all of my chemo before surgery.

Has anyone else been in a similar situation or are you all going to complete chemo before surgery?

Amy, I hope you don't catch that cold!

Mandy, I think you're doing good to be running 4 and walking 1. I'm down to 3:1 running to walking ratio and haven't been able to keep that up for more than 2 miles. But, onc says I should take my Procrit tomorrow since my RBCs were low and maybe that is why I've been having a hard time.

LeeAnne, You look great in that picture. Good for you. Do you have to shave or does it stay smooth? I still have the stubbly head from the #1 buzz cut.

Hope everyone else is having a good week.

LeeAnne - I just saw your new avatar...you look AWESOME! Geez, I won't even go in my own backyard without a hat or scarf! My head is still so white, making it even harder to ever go commando should I ever get the guts!

Liz - good for you for continuing to run! I actually ran my middle mile non stop the other day and thought 'yeah I am out of the bad stuff' but then yesterday tried doing so again and ended up having a walk break. Mind you, I had just gotten up had nothing to drink (stupid me!) and wondered why I felt a little tired - can you say dehydration?

I had my surgery in March so I can't speak to the chemo/surgery question - although I do have to go to clean up a too-close-to-call-clean DCIS margin on September 6th. My surgeon doesn't understand why I am having this surgery but if the docs at the cancer center recommend it - I am with them. Surgeon says it will be a 10 minute procedure. Believe me I don't want more surgery - it delays my rads and this whole treatment journey- but better safe than sorry!

It is going to be hot hot hot here today! I am going golfing with another lady I met through this website who lives in my area this morning! Looking forward to that! Tomorrow I am off to the rocky mountains to do some hiking! We've scheduled 3 shortish day hikes for Saturday (about 6 hours in total) but it's supposed to be hot so we'll see how that goes. I am really excited!

Hope you all have something to look forward to, too!
Take care,
Mandy

Hi! I've only posted a few times at the beginning, but I'm a May chemo person and I've kept up with all of your posts. I feel I know you all.

I had bilateral mastectomies in April, have 4 DD A/C finished and started 4 DD Taxol yesterday (Wed). I will be doing radiation after that, at least on one side. I've had trouble with nausea every time. The 2nd round I had a drug reaction to compazine and raglun. It was bad, so I decided I wouldn't take anymore antinausea pills! Consequently, I've struggled with nausea about 7 days every treatment. The last A/C I was extremely fatigued...couldn't do anything. I don't know how some of you work and take care of children. I'm a school media specialist, so off for the summer and my children are grown. My husband is a huge help also.

I'm having reconstruction using tissue expanders which were inserted at the time of surgery. Problem is the left surgery site has not completely healed (big scab) so they cannot "fill" until it is healed. That will probably push back my radiation, which my onc says will be OK. Anyone else having problems with this?

I thoroughly enjoy reading all of your posts. I also wish the best for all of you. I've tried to tan my head, but it doesn't seem to want to tan. I'm heading to Pensacola, Florida in 2 weeks to visit my grandkids...I'd like it tan!!!!

Hang in there...it is getting better, I think!

Had my first Taxol today, and it was pretty uneventful but LONG. It takes 3 hours to drip! I didn't have an allergic reaction, but the combo of lots of Benadryl AND extra Dexameths meant that I was really tired and really wired all at once. Still am, and it is not pleasant. The nurse said that half an Ativan will help, so I took that when I got home and will try and remember to take it with me next time.

How is everyone else doing?

Hugs,
LeeAnne

Hi girls,

It seems like we're all getting to our half-way points right about now. I had my 4th of 6 FEC yesterday. Slept the entire day and most of today, under the influence of th pump medicnes and the marinol. I'm very "fuzzy" but I know I just have to ride it out. Nausea comes and goes--when I notice it just push the dose button on my pump. I went back to the onc's office today for more fluids. They let me take one of the beds they have there, instead of a recliner, so i was able to just nap the whole time.

Amya, sorry about your reaction! Ugh! Don't you sometimes start to feel like a "guinea pig"?! I hope tonight goes smoothly and you don't have to call in.

Liz, has either doctor been able to tell you pros and cons for each decions, and why they reommend the one they do? That might help you come to some clarity.

Susan, I forg to mention before that I did have compazine suppositories on tx 2, which didnt' seem to do any good for me. I hope you're feeling better and can face the next treatment knowing what to do to make it go a bit better next time.

Amy