September 2013 Chemo Group

Miss_Mama_Bear

KBee: that is absolutely ridiculous! I would have been frustrated too. I get so frustrated with my PA sometimes too. She is kind of the same as in she doesn't take things seriously. I would have thrown a fit and told them they could come to my house then instead of me going to the ER. I hope your fever stays down and you don't end up in the hospital again Why can't you take anything for the Neulasta/Taxotere pain? I have just pretty much resigned to taking Ibuprofen and Lortab every single day. The Neulasta totally kicks my ass when it hits and it sticks around for about two weeks and then week three the muscle pain sets in so I need something for that. I am not asking for my dose to be reduced again though, especially after I got the news that my tumor hadn't shrunk nearly as much as I thought. I have to get my Neulasta shot earlier in the day this round because it is on Thursday and they are only in the office for a few hours in the morning. That means the sternum-breaking, bed (or couch)-ridden, tear-inducing, Chuck Norris kick to the chest will happen earlier in the day. Last time it was about 6 hours later, so that should put it about the time we are going to eat Thanksgiving dinner. BLAH! At least my son's teacher is going to bring us something to eat (so sweet of her!!!) I surely am not going to have time to cook anything. I have so much homework, reading, essays, 3 MAJOR tests, plus finals in the next two weeks, and all with chemo brain. I am so screwed!

So....my response to your rant turned into a rant of my own lol, sorry! Hope all of our days get better! Now, I am off to see if I actually retained any of this crap I have been studying all. day. long...

kjsimpson

MamaStewart,

Are you taking Claritin (or it's generic equivalent) starting the day before the Neulasta shot?  It made a world of difference for me.

I have Chemo on Wednesday and the Neulasta shot Thursday morning too.  I should be able to enjoy Thanksgiving dinner... sans taste.

I admire your courage and positive attitude!! Stay strong!!

PeacockGirl

true to form, I followed lighthouse lady again this time, neulasta side effects still sucked but nothing like taxol #1...I managed an hour walk today where last time I wasn't even upright and moving until Tuesday. Did not have the intense bone crushing pain like last time thankfully oh and I took mama Stewarts idea and just shaved my head with a lady bic today..the hairs I had left were so gnarly, crispy, and obviously just dead sitting there in the follicle. Now my head feels really weird, it's odd to even touch it. Like a fragile egg without a shell or something.

lighthouselady

peacockgirl - I shaved my head, too. Got tired of looking like Jack Nicholson with the scraggly hair all over. I still have some in the back, which I left since you can see it at the bottom when I wear a bandana. From the front I'm totally bald, though, and wow I look weird. I just keep thinking that next week I'll be done with all of this and can start trying to get back to normal... at least until surgery!

Speaking of surgery - I had dh call my surgeon today because I was just NOT happy with waiting 7 weeks for my surgery after chemo. Hubby said when he told the nurse, she immediately said, "I'll call them and tell them they have to move it up." She was very insistent that my surgery be 3-4 weeks after chemo. It might mean delaying my hysterectomy if they can't coordinate with that surgeon at the earlier date, but I'm ok with that. I just don't want my body to be a breeding ground for any cancer cells still surviving for any longer than necessary.

Kbeee - How are you doing?

PeacockGirl

LHL...omg next week you are done with chemo! How awesome does that sound? I'm on the daily countdown..25 days to last infusion it kinda doesn't seem possible with how insurmountable 16 weeks was when we got started...but here we are. Stay strong all you September sisters..we are slowly but surely getting thru this together! Ps-omg I want a glass of wine. Tomorrow marks 12 weeks of no alcohol. Sometimes I wonder if I would be better off with a glass of Pinot instead of all these Rx meds I take to sleep! LOL!

kjsimpson

I like the feel of my head when it is just shaved.  But I really long to have my hair back!  I miss my hair!

Are we at 25 days, PeacockGirl?  That sounds about right.  My last one is on December 20th.

I meet with the surgeon tomorrow.  Really looking forward to getting the surgery on the calendar and getting a clear picture of where the cancer is and isn't after chemo. 

lighthouselady

I was telling my mom today - unless you've been through this or suffer from some type of auto-immune disease, you will never understand just how awful chemo is. I think (knock on wood) that I've had it relatively easy.... I've had many of the typical side effects but I know others have had it so much worse. But even when someone asks me how I am and I say "Good", good is a relative term. My "good" means I'm doing good for someone going through chemo. If I was healthy and NOT going through chemo, there is no way I would say I am doing good feeling the way I do right now! It's not just the individual side effects like the fatigue or the nausea or the pain or the mouth sores or the headaches or the nosebleeds..... it's just the feeling that EVERY CELL of my body feels WRONG. It's the feeling of having no energy for even the smallest of tasks. It's the feeling of being unable to focus on anything that I used to enjoy. I have always been a voracious reader and lately it takes me a week or more to read a book that I would normally finish in a day or two. It's the emotional and psychological toll this whole things takes on us. I miss being normal. I miss looking normal. I want hair, and I want it now. I don't want to wait months and months. I want my eyebrows to quit falling out. I want to drink water and not gag. I miss having drinks that taste good. I am sick of taking a hundred pills a day.

Anyway, no real point to this.... just wanted to get some thoughts out. There is so much more to getting through this journey than dealing with how we are feeling in any particular moment. {{{hugs}}} to all of you who have made this experience so much better for me than it would have been without your friendship and support.

Miss_Mama_Bear

KJ: yes, I just take Claritin every single day too. Even right now, day 20, I still have pain in my breastbone occasionally with taking Ibuprofen and Lortab. Last round I even took a half a Lortab in anticipation of that violent first hit 6 hours later and I still ended up crying and in bed, and took the other half of the Lortab lol. I am thinking it may be because I had it in my right arm.The previous two rounds I had it in my left arm and it didn't hit me violently like that. I just had a level 10 stabbing pain in my left hip every 30 seconds at times for almost two weeks...what is worse? Think I will try the left arm again this round.

My "old hair" popped back up through the surface but it is still just sitting there. My new hair is growing out again but I can't get the old stuff to come out. You can clearly tell the difference as the old stuff is way coarser and pokey and the new stuff is super soft like baby's hair. It is pissing me off for some reason. Maybe because it just sits there, a reminder of who I was before and who I can never be again. Maybe I am being crazy, but I want it to go away. It is not long enough for me to pull it except maybe with tweezers. I think it is blocking any new hair growth and I worry that I won't get any hair replacing it even when I am done with all this. I have a spot about the size of a golf ball that is old hair and there is nothing growing there. I think I will shave it again and see if it will get rid of it, Hopefully it won't just pop up on the surface and sit there again. Bastard hair. It is really weird feeling to be completely bald. There is such a lack of sensation. I didn't realize hair played such a part in sensation.

Lighthouse: so glad they moved your surgery up! I would be worried about waiting so long too.

Peacock: I am ready for a drink too! I have a party scheduled 24 days after my last chemo, but it is also only 4 days before my SLNB and lumpectomy so I probably shouldn't drink anything. I did have one drink a few days before round 2 or 3. I was so very down and didn't really care. I was so paranoid about drinking though that I didn't even enjoy it.

SpecialK

mamastewart - bone/joint pain is also a Taxotere SE, so you may be getting it from two potential sources.

Miss_Mama_Bear

And wish me luck on the homework... I am the type who has never really had to study before. Reading the material was usually sufficient. Now, I can come across a couple dozen words a week that I have no idea what they even mean let alone what part the play in the grand scheme of what we are studying. Basically like I didn't even read the material because even if I go back and read it there is no "lightbulb" that clicks on "oh yeah, now I remember." No idea, nothing there at all. Plus it takes me at least 10 times as long to read the stuff as it normally would, even if I can stay away for more than a paragraph at a time. I seriously hope that this chemo brain goes away or it is going to be major hell for the next three years.

Miss_Mama_Bear

SpecialK: I think so. I have bone, joint, AND muscle pain! Sometimes I pat myself on the back for all the exercising I did because of the way my muscles feel. I don't exercise at all, by the way. Just stretching my legs hurts enough to make me grimace. Looking forward to the day that 70+ year old women aren't passing me like I am standing still. I am actually excited to start my steriods tmorrow because they do help quite a bit.

Miss_Mama_Bear

Who said something about having to wait exactly 24 hours to get their Neulasta? Do you know why that is? Maybe that is why I am having such issues with it. I get chemo from 9:30-3:00-ish and then go in to get my Neulasta t 1:30, so it is not 24 hours. This time it is going to be even earlier because they are only open from 8-10:30. I know that you can't get it any later because it works on the bone marrow for up to 20 days and if it were still working on your bone marrow when you got chemo again it could cause permanent damage to your bone marrow. Is it damaging it by me getting it too early?

SpecialK

mamastewart - I don't know if they mean literally 24 hours - I think it is a loose interpretation of 24 hours meaning, next day. My infusion was always on Thurs., and started at about 9 a.m., and I didn't leave until late in the afternoon each time. I usually got Neulasta the next morning before noon. They had to administer all meds prior to noon on Fridays because they have no docs on the premises after that.

70charger

LHL Loved the rant! You pretty much summed it all up. I had a chat with hubby just the other day & told him that if I have a reoccurrence I will not do chemo again. He was just fine with that. Chemo sucks!

VintageGal1111

I had to wait a half hour once because it was only 23 & a half hours since I had infusion check out time. So they do mean it literally where I go!!!!

KBeee

mamastewart, The literature from the Neulasta shot said 22 hours. Will they let you bring it home and self-administer it? Good luck with the homework. I hope you are able to get it all done. Wow...taking classes during all of this. Kudos to you!

kj, hope all goes well with the surgeon.

LHL, I am glad you got your surgery moved. Good for you for being persistent. I hear you on the vent. I feel like I have gotten off so easy as far as chemo, but it is nevertheless a hell that no one understands who has not been through it.

Peacockgirl, When I was in the hospital, I was surprised to learn that they do allow wine sometimes! The nurse said that sometimes they need to allow whatever will make people happy. She said there were a few people whose spouse brought them wine to have with dinner every day...as long as the doctor allowed it. I am guessing that perhaps was people who are later stage with different cancers, and are maybe enjoying their last days there...not sure, but I was surprised! At any rate, we all need to have a collective toast when the last September gal finishes.

My temp was up to 101.5 last night, so they made me go to the ER again for labs. What a waste of time and money since they could have drawn them during the day while I was there...or had me come in today for that matter. Labs looked good...white count was high from the Neulasta. I did get a bunch of Ibuprofen and a liter of fluid, so that made me feel 1,000 times better. I feel like if my breast cancer does not come back , I will get lung cancer from all of these chest x rays. ERs do not just draw labs. They do labs, IVs, chest x rays, urinalysis, etc. I am glad they are thorough, but it is a huge waste of money when I needed a simple blood draw. OK. Rant over. Thankful to feel more human today.

mercedes60

lighthouse, thks for the info about nails and wow well said about how one feels on chemo, mentally and physically, all the side effects that ARE NOT in those colorful pamphlets they give u. The times when i was close to passing out being out of breath. Taste too awful to explain and friends and family, god bless them always telling me to stay strong, well i get pissed really pissed and i cry when i'm alone so no im not always strong . But we carry on dont we, we need to because this legalized form of poison is our recovery. Good to vent though.

Positive negative, thks for the tip on nails also. Groove on. Lol. I grew up being groovy. Xxx

knightzoo

LHL-that description is perfect! I'm printing it out!

Neulasta - my doc said that some insurance only pay 24 hours later so they have to check. But it can't be true that you only can have it every 3 weeks, because I'll get it every 2 weeks on AC and dose dense taxol also goes every 2 weeks.

Drinking-no one ever told me not to drink. In fact it says right in my little manual they gave me that 1-2 drinks is fine. I may have had only 4 or 5 total over 11 weeks, but I'm not abstaining. It does feel like my liver is already working plenty hard though.

Taxol nails-I haven't done anything but an occasional nail strengthener clear coat and my nails are fine.

Last night I had a horrible headache. I've had meningitis before and would've gone to the ER for a spinal tap if not for the chemo. Ugh. Pain meds took the edge off enough for me to eat dinner and go to sleep. Hoping for a better day today, although waking up my joints already ache. My family had planned a trip to Dominican Republic over the holidays. Now our friends are there and I'm home crying myself to sleep. Stupid cancer.

Hope everyone has a good holiday! Last taxol for me on black Friday.

simplelife4real

Hi All,

Lighthouse, I think your description of all we go through is right on the mark. I feel like cancer took away my innocence. Bad things do happen to good people for seemingly no reason. I lived a very healthy lifestyle and ended up with this. When I get in the dumps about it during my pre-chemo steroid crashes, I find myself crying and saying over and over again "IT'S NOT FAIR." Most of the rest of the time, I can deal with things okay, but those steroid crashes bring it all tumbling down on me.

For what it's worth, I didn't have any problems with my nails during my 12 weekly taxol infusions. They grew slower, but they all seem to be fine. It was nice not having to cut and file them so often, but they didn't change colors or loosen. I haven't worn any nail polish since I got diagnosed.

Kay

audra67

Lighthouse! YES! EXACTLY! and I have only had one treatment, you are my hero to have done so many...I feel that way already and the thought of adding a port and 3 more treatments gets me feeling anxious and overwhelmed! Trying to stay one day at a time and in the moment or I get freaked out!

Using Ativan nightly to sleep and it is helping. I don't feel bad about using it as that's what it is for! NEVER have used anything before this...

I have a thought on wine...drinking...I used to drink almost a glass of wine every night with dinner...sometimes 2...well on American Cancer society site it says alcohol consumption as a cause of breast cancer...so I am thinking I will NEVER drink again...as I always exercised 3-4x week, not overweight, eat Mediterranean diet and very healthy, no cancer in family etc...

Am I crazy to think the alcohol could've increased my risk or just paranoid to think to NEVER drink again?? I just know I do not EVER want this to spread or reoccur...I DO NOT LIKE ANY OF IT!

I want to be normal again too... but what will normal be??

Prayed for by friends and family last night and no nightmares! It worked! I am doing it every night and so tired of those negative thoughts and dreams...they are out of here!!!!

Art123

I have a question about neulasta ... What body part is that shot given? I assumed the arm but want to know before next week so the wife doesn't freak out if It's somewhere different.

Our onc told us 24-48 hours after chemo. We usually go on Tuesday so would go Thursday am for the shot. Wasn't sure if was going with her for he shot.

Another question: did any of you ladies work during the AC? My wife manages a small boutique inside a major retailer in the city? I'm a little paranoid about her being their during holidays with all the people and her immune system being down.

Thanks for your help & support.

Have a great thanksgiving.

alfranco

The nulesta is usually given in the arm or tummy. I couldn't work, my hats off to your wife.

KBeee

Art, neulasta is a sub cutaneous injection and can be given in the arm, leg, hips, belly, or back. Typically most nurses will do it in the arm. i gave myself mine in the belly.

Audra, if you read the literature enough, everything we do can cause cancer. I am healthy weight, eat healthy, exercise daily, drink once or twice per year (if that), breastfed 3 kids for a full year, and here i am...here we all are. After this mess is done, I am not going to stress about whether or not every little thing could cause cancer, because I will drive myself crazy doing so. I will try again to be generally healthy and see how things go. i do not want the stress of trying to avoid cancer to give me a heart attack.

After 4 Taxoteres, one toenail is history (hooray for it not being flipflop season), the other 19 nails on the fingers and toes are holding their own so far.

Knightzoo, I hope your headache has subsided. I am so sorry about your trip. That just plain sucks. I hope when this is all done, that you can plan a special celebration trip somewhere...somewhere warm and sunny... with a beach.

alfranco

My nails turned black since the first infusion. Tried everything.

Lhl-I agree with you.

Simplife- I also cry a lot, but I think it's just me. I miss the old me, running around and doing all my errands,working without worries. Now I like when someone is with me in case I faint.

mercedes60

alfranco i know how u feel, we feel so helpless, i like someone with me if i go shopping to the mall, yes in case something happens. And as time goes by i feel it gets worse msybe its because theres so much of this controlled poison in us its doing a toll on us. My husband accompanies me to my treatments and my sister takes me to my appointments. I do not work i retired at age 55 from a high stress position in a large aircraft company, that was 5 years ago and for my 60 birthday well here i am with bc.

Kudos to those that have to work or have young kids to take of, i sure hope u have help.

I guess no one is going to black friday! Lol can u imagine a bunch of chemo heads fighting over something could be violent.

Take care

Miss_Mama_Bear

It is so crazy how different all of our docs are and what info we have been given... I found this about not having the Neulasta early http://www.oncologynurseadvisor.com/timing-of-neulasta-and-preventing-opioid-induced-constipation/article/178150/. I will ask my onc about it today (not the PA!!) The PA is the one who told me that the Neulasta worked on the bone marrow for 20 days. I was in because my cold was giving me major chest pain and she said it was the Neulasta even though it was like day 16 or so. I have no idea. All I know is that it sucks. I think I will ask if I can wait until Friday to have it. I am guessing they want you to wait until the half-life of the chemo has been reached. I am usually done with my Taxotere around 1:00 so it would be about 21 hours. I suppose it would be okay but I will verify with my onc. I don't know if I could self-administer it. Funny thing coming from someone who has taken care of a picc line in her son and all the things that are involved with taking care of him. I just don't know if I could do it to myself though, and at $9000, I wouldn't want to waste it!

KBee: What toenail did you lose? My big one on the right looks like it is starting to go. It is painful, too, but I don't know if that is because it has a tendency to become ingrown. And I agree about the not fearing cancer in the future. I plan to keep myself on track better with eating healthy and try to make time for myself (something I really really suck at). I can't sit and think about cancer all day everyday in every thing I do though. Even before all this I had told my friends that are completely obsessed about nutrition not to tell me stuff or I would end up living like the Amish somewhere. I have a tendency to get anxiety and go off the deep end.

Homework: HA! I think I absorbed some stuff last night. I woke up spouting all kinds of terms lol. Studying the immune system and all it's complexities, oddly enough. At least I didn't even have to read the part about where white blood cells are produced; Neulasta my friend showed me that. Hopefully I can pass this test (and the next 3) with a good grade. I have to make up for the one I failed at the beginning of semester. I remember doing homework in the parking garage after getting an emergency x-ray before class one week lol, and I didn't even read the material for three weeks because I was in the doctor's office more than home those first 3 weeks of being diagnosed. Ugh, I had never failed a test before. This is rough for me lol. I have to maintain a 3.75 for scholarships, so I have to get about a 90% on these next 3 tests. I'm screwed.

Miss_Mama_Bear

Oh yeah, and guess what? Last night my daughter was in my bed hacking and coughing all over the place. Yup, they are officially sick again. I am thinking maybe I should have THEIR levels tested. Every single time I am getting ready for infusion they are sick or just get sick. I am praying that I don't get sick again, but at least I know I can survive it as I have been sick twice -or three times..I've lost count- since starting chemo. Maybe that is why my bone marrow is working over time and the Neulasta is hurting me so bad lol.

lighthouselady

I, too, am not going to stress about every little thing causing cancer to come back. I know we can reduce our risk somewhat, but I'm not going to stop LIVING. I don't want to spend every day in fear of a recurrence. I will continue to try to eat healthier and get some exercise, but it's like Kbeee said, I did just about everything right and yet here I am. Just the luck of the draw (or genetics, in my case).

Anyway, thanks for letting me rant last night. I didn't really intend to do that when I sat down, but once I started typing it all came out. LOL

Looks like my surgery will be a go on 1/3 (which is 3 weeks earlier than they originally said, thank God). I will not be able to have my hysterectomy at the same time, though, because the gyn oncologist is unavailable that day. I guess that's a mixed blessing. It will make my recovery just a little bit easier, but it means I'll have to have that surgery down the road at some point. I'm scheduled to see all three surgeons on 12/19, so I guess I can talk with her then about when she'd want to do it.

josgirl

Art - You can have the shot administered in your arm or stomach fat - doesn't hurt as much in the stomach but not sure if it changes side effects.

Alcohol, I was told to limit the alcohol to one drink a week and certainly no more than one a night.  But I drank a little over chemo - mostly a glass of wine with dinner.

Audra - there is a big study that recently showed the alcohol relationship to cancer which is why it is getting a lot of press.  But from my reading of the study the increased risk is for/due to young women and binge drinking.  Someone correct me if I am wrong.  I think the general alcohol risk with cancer is an idea just like with everything else - eat healthy, exercise, don't drink (ok nevermind maybe a glass of red wine is actually good), no processed foods, no sugar, sleep 8 hours a day.....on and on.  Now I am not saying this stuff isn't super important - it is what is keeping all of us alive and not developing other horrible things like diabetes and heart disease.  But to say general alcohol use causes cancer...I don't think anyone is saying that...scientifically at least.  Course in my honest opinion, I think refined sugar and white flour is probably worse for most of our cancers as it greatly increases inflammation and therefore provides a breeding ground for tumor growth.  But can I cut out all my refined sugar and white flour?...trying but will never be able to fully do it.  My strategy is to focus on adding good things to my diet and not removing bad things.  But as I add good healthy stuff and with the knowledge of what the bad stuff does, it is naturally becoming a smaller part of my diet.  I try to eat mushrooms, green tea, as many vegetables as humanly possible, and fruit evrey day.   But I like a glass of (white - as much as I hear about red I don't like it!) wine when I go out to eat.  Anyway...the everything in moderation idea depends on your idea of moderation but I think a glass of wine once a week - fine. At least that's my plan. 

LHL - hit the nail on the head - like Knightzoo I may print it out as THE description.    

Art123

should I get the 12 hour or 24 hour Claritin and when should she take it and for how long? The onc looked at me like I was crazy when I told her about the neulasta Claritin thing.

As for alcohol, my wife and I are big craft beer fans but in moderation so I don't think that contributed to her cancer, she eats right, does 30-40 miles a week in the gym and is not overweight, it's either genetics or just bad luck. You cant put the genie back in the bottle and we just have to deal with where we are.

She's abstained thru chemo, I can't say the same for me.