Has anyone started a forum for Chemo in Dec 2008?

Majanumba1

My onc never gave me an option as to whether I should take the Neulasta shot. I Also take the steroids 2x the day before, day of and the day after treatment. My counts are are back up to normal before my next treatment but the neulasta is miserable. It does cause terrible bone pain and I don't blame anyone for not wanting to put anymore stuff in their bodies than is absolutely necessary. I think my onc wanted to insure that I am able to have all 6 of my treatments on schedule and that the Neulasta will help that happen.



it is day 9 after my 3rd tx and I still feel awful although I confess I went out to play in the snow this morning for way too long. I am paying the price now as I am typing this from bed. yep, that's me. Carpe Diem.



Cebula, I am sorry for the itch, I hope you find a solution that you can live with but the deca will stop it cold. i know how you feel, when I read the inserts and side effects of the drugs I am taking

I want to freak out. The last time I went to the onc I had a long talk with her beginning with the statement that I planned on living a long time and I didn't want chronic heart, liver or other problems as a result of the drugs that I am taking now. She was receptive to my concerns and we actually discussed some things I could do to help....green tea, tumeric, vitamin e, yoga, meditation. Some of these are things that the chemo class said were a big no-no. It is not easy knowing the right thing to do, is it? It increases anxiety.......I guess we all have to make our own informed decisions which does give us a bit of control over our lives when they oftentimes seem to be completely out of our control!!!!!

Thanks for letting me vent, I feel better since I know that we all share this journey and that we all experience it in our own unique way. Love and hope to us all

havehope

bobcat:

I do have eye twitch for a couple of days after treatment. But my eyes are so dry that in the morning i can't open them. It goes away after a while.

Texas357

I asked my medical oncologist when I could get the port removed. He told me immediately after my last chemo, if I wanted. My surgeon may want me to wait until after the nadir but I'm not waiting a day longer.

I meet for the first time with the radiation oncologist this Friday morning. Hoping to put together a timeline for the rest of my treatment. I really get frustrated that they seem to spoon feed us one step at a time. I cope better when I can see the whole picture, not when I get so many surprises.

By the way, for those on a Taxol treatment. my nurses recommended husing Sally Hansen Hard as Nails. I stopped at the drugstore on the way home to pick some up. Can't be too soon to try it!

Mandy1313

Hi all

I survived my 4th CMF tx today. Only the M was missing since I am due to start rads tomorrow and Methotrexate is bad for rads. My onc who is very careful is OK with me not having the methotrexate for two TXs, so I will go with her feelings.  I will have either 6 or 8 total TX so I still have a long road to travel.

So far I am tired (slept all afternoon) but no other bad SE yet.  Bobcat, I am also extremely depressed...I do not know why but yesterday afternoon, it just hit me.  I am weepy and angry. I actually told the onc when she asked "how are you" that I was extremely depressed but did not want a pill for it. I am tired of pills.   I told the chemo nurse who wanted to put the IV in a vein next to my thumb that I thought there were veins that would be more comfortable for me and then showed her one. She got it into "my" vein on one stick. I do not know why they do not think of patient comfort routinely and why I have to fight to just be treated humanely.  That is where I am now....

 

Don't know how I would manage without these boards to complain to.

Have a nice night.

Mandy.

EleanorJ

Mandy I'm sorry you're having a rough day but you did give me a good laugh. I guess that's why I'm not calling my onc about my rash, I don't want anymore pills! It really isn't that bad this time. What I'm mostly sick of is this roller coaster of emotions. One day I'll be completly depressed that I just want to cry all day and the next day I'm as happy as could be! I never know what to expect, every night I go to bed wondering what will the next day bring. Well, good luck with the rads tomorrow.

mary5454

Well my rash has continued. Moved from my neck and hands down my body. Went to dermatologist today - she biopsed it to see what is causing it. But got a message at the end of the day from ONC NP that my Onc is stopping my chemo....I know he feels I will do as well on rads and hormones (AI) - My husband is so happy but I am feeling mixed. wondering will it be enough...feeling like stopping now is quitting...(but not wanting any more chemo drugs!)  and hating people feeling like now it's all over... it's not! I am bald and scared and have many years of treatment left. I don't know. maybe I should just go to bed...

Hope all have a good night,....

mmliv

Mary - How frustrating and miserable! Given your oncotype score, maybe you were borderline for chemo anyway..... so you just get to graduate early to rads and AIs. 

Nuelasta - My onc did not give the shot after the first treatment and I ended up being hospitalized, so I am delighted to get the shot. There did not appear to be any infection, but I still had a high fever...... and I felt lousy - not sick, just puny.

I am one week away from my last TC treatment (#4 of 4) and am feeling pretty normal. Actually did quite a few chores..... and some paperwork. Almost productive! :-) Looking forward to meeting with the radiologist on Thursday to start the process for rads. I too am hoping for the shorter regimen.

Mary L 

lisasayers

Bobbi...I have had the eye twitching/watering this week and it about a week or so afte rmy infusion!  Weird! 

 My onc automatically gives the Neulasta...he said because of the "flu season".  I tried fighting him on it, but my numbers were down, so I gave in!  One more to go!!!!!  At least I had my detox soak again this time and I didn't have the pain like the second time.

I can't believe what they charge for that shot!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  But then again, Big Pharma is all about the $$$$

Cebula...sorry to hear about the rash!!!!!  I hope you can get that under control!

 Well I'm off to bed....looking forward to it! LO

Hugs!

Firni

Wow! The board's been busy today.

Welcome Milet.  Visit often.

So many of us have been "forgotten" by people before we're even done with chemo.  I can't imagine that many will stay by our sides thru rads and 5 years of pills.  Only those that have been thru it can begin to understand how long this road is.  Our casual friends don't have a clue.  And that my friend's is why we all come here pretty much every day and will continue to for a long time.

I do get Neulasta after each Tx.  I guess I don't mind getting it.  I was able to stay ahead of the bone pain with Clariton D and Ibprofen this time.  I'd rather know my numbers are going to be good and I won't have to delay any Tx.  I mean really, I was all wanting to keep my body pure and put as little in it as possible.  But after the poison of chemo, and how bad the SEs were after the first Tx while trying to not take stuff, I'm over that.  I'll take what ever I need to take to get thru 6 tx's.

I don't get extra Decadron.  Just thru my port before Tx.  Or if I get really nauseas.  Or if I get a rash.  Or if I get hand/foot syndrome.  Or if I get something else that I'll have to call the clinic about.  Because no matter what it is they tell me to take Decadron.  In fact, I have an Rx for 30 pills with 3 refills instead of the standard 12 pills for nausea.  

Bobbi, I'm sorry you're feeling so blue.  I'm sorry too that your SO wouldn't give you the extra attention you needed yesterday.  I'll tell you, with the cold and snow and ice and gloomy skies, who wouldn't  be depressed.  Then add all the other fun stuff we get to do.  It's a wonder we aren't close to suicidal some days.  

Well, it looks like I've been on my soap box long enough.  As I read this back, I'm not being very uplifting.   I guess I'll say goodnight.

Lainey64

I really like my Onc.  He's conservative but seems to have covered all the bases with me to make sure everything goes as smooth as possible.  Like everyone else, my WBC is checked prior to each TX to make sure it's good.  Last time it was very good at 11,000.  I think he said it's good because the Nuelasta shot is doing its job.  I get the shot the day after every TX and so far I haven't had too much of an issue with the SE's from it.  I can feel a few aches and pains but nothing intolerable.  If the shot is going to keep my immune system strong and my WBC up so that I can keep on my TX schedule, I'm all for it.  I want this mess over with as soon as possible. I also have had no issues with my insurance company.

I hope everyone is having a good day.  I can't kick the crud taste in my mouth.  I think it's here to stay.  Everyone keeps telling me to suck on a lemon but I can't stand the thought of it. 

Caroline, I'm sorry to hear that you're getting the rash again.  Sometimes I put Gold Bond anti-itch powder on hot spots and it seems to help.

Catrenae

Good Morning Divas,

 I've been reading the posts but haven't posted anything in a while. I'm doing good this week. Tomorrow is day 14 after the 3rd TX. The onc. nurse told me that #3 usually tends to be "the really bad" one but I feel very fortunate because it hasn't been any worse than the previous two. The only new SE is that my feet have started tingling, like they're asleep. Not all the time but enough to notice... : ) 

Cebula, you mentioned your rash. Had the Dr. told you what type of rash it was? I had developed a very itchy, sore rash under my left breast after TX #2. Turns out that it was yeast rash. My Dr. told me to get over the counter "lotrimin" cream, or the generic, and use Gold Bond powder. It cleared up in a matter of days....

I love everyone's description of their wig and the references to dead aninmals... I actually did buy a week after TX#3 but have yet to wear it. I'm not sure now why I even bought it because I'm perfectly happy just wearing soft hats/caps, etc. It is a nice wig so I guess it will be nice to have just in case...

Wishing everyone a Happy Wednesday and an easy day at work!

Cat

EleanorJ

My rash seems to have cleared on it's own, but now my hands hurts a little! Always something, altough this treatment (#3) seems to be the easiest one so far, I have yet to call my onc.

I have yet to wear my wig out as well. It's nice, I really like it, but.... so itchy, I don't know I could stand wearing it for a few hours. Maybe if hubby & I go out, but I'm not even wearing scarves or hat. Not around the house anyway, even when the cleaning people came from Cleaning for a Purpose I stayed bald the entire time. I only cover my head outside because it's so cold right now. I told hubby I'd probably start covering my head more when it starts growing back and it looks awful

lisasayers

I have not worn my wig either....and my daughter hasn't even worn hers for months! LOL  We are both doing hats, scarves and embracing the bald around the house. I even teach Zumba bald!  If it wasn't so darn cold, I would go out in public that way!  Hey, I even posted the same photo I have on here on facebook!  I figure it may help people get used to it!  It is just hair!  Plus it helps my daughter. 

Today is day 13 after TX3 and I would say TX3 gave me much more fatigue than the others...but I'm pretty much back to "normal" now.  Taste buds are even pretty good.  I have a week and a half until my last TX...praise God! 

Yes, Firni, it is funny how people quickly forget.  But I think a lot of that has to do with the amount of people who actually have cancer these days!  It isn't a matter of "if" but "when" you may get it.  People are just numb to it all...until it affects them!

We are getting blanketed in snow today....I'M SO OVER WINTER! lol

Hugs to all

lktracey

HI ladies! Sorry it's been a while, just gearing up for #3TC.

 I am day 2 today of #3 of 4 TC.  1 more to go on Feb. 17th God willing no bloodwork or infection issues. My bloodwork has been great and I credit the Neulasta with at least part of that.

Feel like crap this am, so I guess I will repeat last rounds symptoms.  Oh well, no pain, no gain.

I hope you all have a great day.  I find myself not online as much and am sorry I am not here as much to give support.  Think I got into a little funk... Hopefully it has passed.

Loving the buzz cut, but don't you know,the darn hair has grown in the last 2 weeks.  This round will surely fix that though!

My poor hairdresser though has gotten 2 new clients out of one of my wigs.  So funny! I had to go in and let her see the cut of it so when these ladies came, she could give them my wig cut!! I still giggle at that!!!

My wigs have turned out to be very comfortable though and I add a cute hat with or without them and actually am having fun with it all!  Small favors.

I did go to dinner Monday with a group of friends to a hibachi bar and had to warn the chef not to melt my hair with his fire show before the cooking began. He thought I was joking at first until I had to tell him he'd be paying allof his tip money to me that night if he melted my "hair".  That got his attention!! Only a cancer patient can appreciate these stories...

So, keep on keeping on ladies. I saw a shirt that said "Pain is weakness leaving your body".  That's going to be my mantra this week.  Use it if you need to!

Lauren

Firni

Lauren,  90% of my hair fell out after Tx 1.  There was just a fine downey stubble left after the big shave.   I thought the rest of my hair would fall out after my second Tx.  It didn't.  Certainly it would fall out after Tx 3.  It has not.  So, I'm thinking that this little bit of fuzz will just stay on my head.   My DH said maybe we shouldn't have shaved my head.  Well, no.  It needed to be shaved because when you can see more scalp than hair, there just isn't enough to keep. The hair on my head has not grown since I shaved it Dec. 22.  About every three weeks I still get stubble on my legs and have to shave them.  Still better than shaving every day!

My wig is pretty comfortable.  I wear a cotton wig cap on my head.  Really cuts down on the itching from the actual wig cap.  The only thing is the wig always feels like it's creeping up on my head and will pop off. Wouldn't that be a sight??  Walking thru the store and all of the sudden a head of hair goes shooting into the air.   It isn't creeping up and it isn't too tight, it just feels that way.  So that is something I have to learn to ignore if I want to wear the hair.  At home I go bald or wear a hat in the house if it's cold.  We keep our house pretty cool in the winter so there are a lot of times I have to wear a hat in the house.  Never to bed tho. That drives me nuts. 

I guess you know you have a good wig when other people what to copy the cut.  What a nice compliment.

apfuentes

Hi Ladies - Yesterday was TC treatment #3 of 4.  My last one is Feb 17th...I can hardly wait!  So far I feel good and this thing has been more manageable then I expected.  I've heard the fatigue is cummulative and by reading other posts, I'm gearing up to hibernate the next few days...which is good b/c we are covered with a sheet of ice over here in Northern VA. 

 The wig thing has been interesting. I wear it more for other people than myself.  I do feel like it's constantly slipping down on my forehead so I have to keep "scratching" along the edge to push it up.  The other day in a very crowded Circuit City, my 5 year old said out loud "Mommy, your hair part is crooked."  Gee, thanks son!  :-)  But around friends and family I've just been wearing a baseball cap and have been perfectly comfortable with it.

Have a great day everyone.  I each day is better than the last!

EleanorJ

My hair have been growing as well, I actually buzzed them again this past weekend, it was driving me nuts, I started looking like Einstein with wild hair! LOL! Hubby says he couldn't see it, of course, you had to be close enough but I'm close enough when I apply make-up, I feel better now It was all different lenghts. I haven't had to pluck my eyebrows since tx started, which is great because I'm not too good at it, so my SIL came and did a great job, I told her she was going to be my eyebrow lady during tx, but haven't needed a touch up. Nose hairs are sloooowly going, I can tell, I have to blow my nose more often. Otherwise, I still have the rest, mostly. Legs & armpits are shaved and "need" touch-up every 3-4 weeks, the only SE I will miss

EleanorJ

apfuentes gotta love kids That's when it comes in handy that I only speak french to my kids, they have yet to say anything embarrassing in public, well, that anyone can understand

havehope

Updated list:  

Mandy1313            #4 27-Jan 09             CMF

iktracey                  #3 27-Jan 09               4xTC 

apfuentes               #3  27-Jan 09              4xTC

Texas357               #1T 27 Jan 09        3xFEC+9xTaxotere    

bkokie                    #3 28-Jan 09              4xTC

mary5454              #3 - 29-Jan 09           4xTC

Lainey64              #1T  29 Jan 09          4xAC+4xTaxol  

busqueen            #3     30 Jan 09           4xAC+12xTaxol

Colleen1960        #7  30 Jan 09        CMF  

mimiwhite            #4  -1-Feb            4xTC 

Grancy11                #  2 Feb               6xTC 

LindaBusEd         #-4   3 Feb             6xTAC

mmliv                  #4  3-Feb                4xTC  

zuffa                      #4 -  4 Feb           6xTAC

Brenny                 # 4- 4 Feb              4xTC  

Catrenae              #4 5 Feb        4xAC+12xTaxol  

Romiles               #3  5 Feb

isasayers            #4- 6Feb                 4xTC 

bobcat                   #4- 6Feb                  TC

sdavis                   #4 9-Feb               6xTC

cebula                   #4 9 Feb            6xTC

Majanumba1         #4 9-Feb              TCH

horsercn             #1 9 Feb (TH)       4xAC +12 Taxol+Herceptin  

Colleen1960         #8  9- Feb        CMF 

Bold                    #3  9 Feb             6xTCH 

Firni                    #4   11 Feb              6xTC

ptjen                   #4   11 feb               4xTC

DrDecker            #3    11 Feb               4xTC   

CindaD               #4   12-Feb                4xTC 

swest                   #4  13 Feb           4xTC 

simvog                #4    16 Feb           4xFAC+12xTaxol

iktracey               #4    17 Feb               4xTC 

apfuentes            #4     17 Feb               4xTC  

Mandy1313         #5      17 Feb             CMF 

Romiles               #4    26 Feb              

lisasayers

Woohoooooooooooo....look at all the smiley faces!!!!!!!!!!!!!  Thank you simvog!

Bold

EYEEEEE TWWWWITCHES!!! Oh yeah! I feel tlike the inspector in the PINK PANTHER. (the original).

Cebula: Sorry about the stupid rash. One more thing to try to control that seems we have no control over. Day 9 tx2 and all is well.

If I could some how control my digestive issues I do not think I would be so freaked out about 4 more txs. My hands are very fragile. easily scratched and chap. I keep a lot of lotion on them and it helps. My WBC. is always grrreat. But I have to get the bone aching shot anyway, standard protocol.

Welcome to the neighborhood Millet.

lisasayers

Bold....make sure the lotion you are using doesn't have mineral oil or petrolatum or petroleum in it.  Look for botanical oils!!!!!!  I'm not having any trould be with my skin because I make sure I use mineral oil free and alcohol free products.

Brenny

Firni

This may sound really masochistic, but I use double sided wig tape on the front of my wig (there's a little vinyl strip at the front - about 2 inches long.  This makes really sure nothing slips or moves.  And I also used the tape with my mailboy hat when I was going out, but used it in the back -- I didn't want it sliding up.

Does it hurt when you take off your wig - maybe like a bandaid -- nothing more.  But I like that "extra" comfort of knowing it's not going anywhere!

Brenny

BonnieK

Hi Divas,

Just checking in to say hello.  Today was my 3rd TX and I'm tired after spending 5 hours at the clinic.  The onc cut back my Taxotere dosage today because I have some neuropathy in my feet and he said if it gets worse, I will be done with treatment as of today.  That made me feel like somebody pulled the rug out from under me, but the doc said it would be fine to do just 3 treatments.  He's not the one with cancer and I'm not convinced, but guess I need to trust him.  I'll get back on an even keel in a few days, and hopefully, the neuropathy won't get worse.  Neulasta shot is tomorrow.

I hope everyone's SEs are manageable.  Take care.

~Bonnie

bobcat

Bold - great visual - that's exactly how I feel.  Wink, wink.

I agree with lisa, lots of moisturizer, no alcohol.  My cats haven't gotten the message yet - those little kitty scratches take weeks to heal

Tried my wig last night for the SO - he didn't get turned on at all!!  It also feels like it's going to pop off at any moment.  Doing the bald thing - lol.

Feeling better today - depression lifted this morning after a good cry and then tax work all day.  I'm done for the night and will have a glass of wine with dinner.  Tomorrow is another day, Divas.  Hang in there and keep posting.  I need you all.

Bobbi

mmliv

How is everyone doing with the snow/ice storm? We had about a foot of snow and I enjoyed shoveling it. Felt good to feel good and do some physical work.

Mary L 

lisasayers

We got another foot of snow today too...we went from the 10th snowiest winter on record to the 7th snowiest in one day!  I'm so OVER winter! LOL

BonnieK

Brenny -- I had no idea there was such a thing as wig tape, so I used masking tape, rolled up to make it double sided, on the front and both sides of the back of my wig the other day.  The tape kept the wig in place and didn't really hurt when I took it off.  Still hate wearing the wig though. 

Bobbi -- I'm so happy that today was better for you.  Keep hangin' in there!

Lisa and Mary -- The northwest has had way more snow than usual this winter, too, but nothing like the east coast.  Let's all hope spring comes early this year and gives winter a swift kick.

My 4th and final Tx is scheduled for February 19th as long as the neuropathy stays under control, so that's what I'm hoping will happen. 

~Bonnie 

mary5454

Mary L- thanks for the reassuring words.  Hopefully will be okay without further chemo.

Firni

Hi Divas.

Well I'll tell ya, I'd just be sooo damned happy if I could get thru one treatment without calling the clinic. Every Tx it's something different.  Today my left arm and hand have started to swell.  I though maybe it was lymphedema.  But now tonight my ankles are swelling as well.  My pants don't fit.  Will go into the clinic tomorrow to see what's going on.  

Bold, I liked your new Avitar.  You are braver than me putting in a picture of your shaved head and you had beautiful hair.  I didn't.  Well all of you who have posted shaved heads are braver than me.  I am thinking that bald women are quite exotic.  I like that.

Brenny, thanks for the wig tape tip.  I'll get out and get me some.

Hang in there Bonnie.  Are you taking B6?  If not try some of that for the neuropathy.  I started taking it and I don't have any neropathy this time.  I only take 50 mgs a day.  Or you can take 100 mgs a day.  My onc approved it.

Glad your feeling better Bobbi.  Those unexpected bouts with depression can be hard to deal with.

Apfuentes, at least your son said your part was crooked and not Your hair is falling off.  

Elaine, try peppermint if you can tolerate that.  It really helps me with that nastiness in my mouth and throat.

Caroline, how is your rash doing?  I have some kind of weird thing on my fingers.  It almost looks like ringworm or something.  Pretty sure it's not that.  I'll ask my Onc tomorrow when he tells me why I'm swelling up.