Chemo June 2010

Julia 2 - thanks for the compliment.  That was my real hair, taken a couple years ago for my 20th high school reunion.  I was looking at old photos of my real hair and decided to post one. 

Sherry - I will be on chemo until the end of October, so don't abandon us!!!  We love to hear from you! 

Taxol #4 was today.  My onco said Taxol #3 and I said no way!!!  I'm on #4.  My hemoglobins were up to 9.1 or maybe it was 9.2 (chemo brain).  My WBC was around 5.something.  And my platelets were high!  So, I'm a third way through Taxol and over halfway through chemo.  I'm a little tired, but up from the da** steroids!  I took an Ativan, so hopfully that will help me sleep.

I'm meeting with my manager tomorrow to go over a plan (did I tell you guys that yet).  Oh well, I need to be rested and it's late.  Good night everyone! 

Sherry, the other name for Ondansetron is Zofran.  Perhaps you know it by that name.  It is very very effective against nausea.  With FEC take the nausea meds BEFORE you even feel nauseous.  I am on chemo into October, please stay with us too.

Latte, it is good news that your CT scan was normal.  Perhaps your body doesn't like any chemo and hopefully the headaches will go away when you finnish chemo.

I have heard the experienced chemo gals say it takes a good six to twelve months after treatment is over to begin to feel 100% again. Sigh...........  That time can not come quick enough for me.

Bon, so glad your Mom is making some progress.

Love and Hugs, Mimi

Good morning, my sunshines.  I hope that today turns out to be SE free for all. Have been catching up on the posts for the last couple of days.

Sherry...don't go anywhere, please. Many here, unfortunately, have lots of chemo to go and everyone would miss you. We've started out together. I'd hope we can all reach NED status together, too.

Kittycat...you are gorgeous in either photo you choose. It's nice to see that smile with real hair or that blonde wig. At least this way it is a reminder of better times AND you don't have to keep answering the question about your fireworks. Sorry that the tape irritation come up. Seems like you've had just about everything the can crop up, doesn't it?

JFV...I love that you were doing the prima scream with me!  You are loud!  I heard it all the way in Florida.

DesignerMom...whenever I'm frustrated and want to escape a particular place or situation I often look skyward and say "Beam me up, Scotty".  So we all need a transporter to get us to your soundproof room. We'll enter quietly on our own and just yell our lungs out. Then we'll go frolic in Central Park  and drink champagne.  (Had to switch to from margaritas the acid is too much for my chemo damaged stomach now).  How's that for imagination. A girl can dream, can't she?

Workermom...My first radiation oncology consult is next week, too, on Wednesday, so we'll be entering this new adventure at the same time. I'm just as nervous about that as I was about chemo.

Julia2...Jobs come and go...how you are treated physically and mentally at this point in your life is what counts most.  Try not worry too much. Congrats on being BRAC negative. I haven't had the BRAC testing done yet but will probably just have full hysterectomy after radiation.

lizzyanne...I got a wicked rash from Taxotere that didn't respond to Benadryl and needed a wallop from steroids.

Latte...fingers crossed that your CT scan is totally clear!

Mimi9186...I sincerely hope you are feeling a bit better and that you have been able to work things our with the doc who is covering for your absent MO.  That just seems weird that he'd up and leave for so long without any warning. Is he ill himself, perhaps?

Chey...you sound stronger. I hope it's for real and that you'll have more peaceful days. It's OK to cry...this is tough stuff. But you can't cry all the time. There are things still out there to be grateful for and to smile about.

NorthernGirl...I'm so sorry about your bone pain and neuropathy. I've only had bone and muscle pain after the Neulasta and that was minor compared to what you are going through. I hope that they can find something to lessen the pain. 

Tmarina, Vicky, Mitymuffin and grney5600 all sound like they have it under control right now. Hope that's true.Did I leave anyone out? Hope not.

Latest on the Mom front: They scoped her colon today and I'm waiting for her doc to call me. I don't think they found anything out of the ordinary except for swelling. DUH! Try having constant diarrhea for two + weeks and see how swollen your colon would be.  Finally they are not talking about moving her out of the hospital until they get to the bottom of this. The dietitian is trying to do the right thing but she really has never been challenged like this before. But they are still feeding her things like bacon. She has an irritated colon. She shouldn't be having any processed meats. There are specific requirements for an irritated bowel that should be followed for now, along with all the other dietary restrictions Mom has. The only way I'm going to get this resolved with the food is to approve every tray that enters the room. I've told my Mom to phone me when the tray arrives and we'll go over what she should eat from it. I am making them a spread sheet of all the acceptable foods which are culled from each set of dietary restrictions. I'd expect my Mom to be confused by the conflicting information on each individual diet, but it just seems so substandard to have a professional dietary staff that can't get it right.

I thank each of you for your kind thoughts and prayers on behalf of my Mom. She isn't a saint...all Moms and daughters have issues. But she's vital and was still more than capable until this all started. Heck, she was sending me emails with links to all sorts of things, from political to medical to recipes to jokes and on and on. She isn't ready to sit in a corner and chew paper. Her docs have known her for years and I just had to jerk them around a bit to get them back to seeing her as the person, not just another older patient.  Yesterday they teased her and gave her the "Stump the Doctor Award".  Now that they are paying attention, I have hope that she'll be OK.  I certainly hope so. She should be OUR poster child...she survived ovarian cancer when she was just 30 and breast cancer when she was 60. Back then they didn't give her any choices about surgeries or treatments...just did a BMX and later reconstruction which wasn't common and is very crude. No chemo, no radiation. They didn't have the sophisticated tests then that we have available to us now. And she really suffered silently, without a support system like we have to comfort or guide her. All those years ago no one openly talked about cancer because it was 'suspect'. People thought it was contagious and dirty. It was kept secret. And my cute little Mom survived it all, physically and emotionally. My step-Dad is a prince of a guy who's first wife died of breast cancer. But he wasn't afraid of Mom's history and has been a shining star in her life for nearly 24 years.  They are great together. Mom has always wanted a 25th Wedding Anniversary...so she has to be well at least through November 2011. I'll fight like a banshee to get to there and beyond.

Thanks for being here for me.  Bon

Bon-->good to hear your update!  Prayed for you both this morning   I'm amazed at how you included everyone and remembered everyone's ailments!  I try but cannot do that!  I think we all wish we could use D-mom's sound proof room!  And then frolic in Central park

Northerngirl-->I'm so sorry you are having such a rough time!   I had about 4 days of bad pain (with dd Taxol), but thankfully I had some percocet (oxycodone) on hand and that worked really well--ibuprofen and tylenol didn't touch it.  Sleeping in the recliner helped too-my hips and legs hurt too much in the bed.  Do you have some strong pain meds?  I hope the pain goes away soon!

Kittycat-->Very nice pic!  Hope all goes well at work (and you're well rested!).

Sherry-->Yes!  Stay here! 

I had a bumpy, itchy little rash at the base of my thumb, and then a few days later some pimple looking bumps (sort of spread out--not touching each other) on the inside of my elbow.  Both cleared up with cortisone cream.  Weird!  I think it's our compromised immune system--lets these things crop up.

Not only will it take 6-12 months to physically feel "normal" after tx, but it can take that long to emotionally be well.  Our friends and loved ones will expect us to be back to normal as soon as we are done with tx, but how can we be after all we've been through?  Many suffer more depression after tx, than during it!  It helped me a lot to be aware of this (I read many blogs of survivors, and saw what they went through) and not expect to be normal right away.  Give yourselves a chance to heal, and process all you've been through, and find someone to talk to, if needed!  And come here to share with others who know what you're talking about!

Have a great day!!

Tina

Good morning ladies!  Oh, my vacation away from cancer yesterday was brilliant.  I genuinely did NOT think about it all day long.  I just enjoyed catching up with my dear friends, laughed at my silly son playing, playing, playing (with the dog, in the pool, with the frisbie).  Golly, when did we forget how much fun it is just to PLAY! 

Sherry- Sorry about all the confusion with your diagnosis and pathology.  You were so sick at the beginning, I could understand that you might miss some things.  Heck I am still trying to get clear on mine.  Just keep moving in the right direction, you will get there!  I agree with Bon.  We all started out together, I can't imagine not having you here.  We are all finishing chemo sometime (please God!) and need each other for the "next" phases.  I sure hope we will do it together.  I feel like we are family now...a WEIRD, wonderful family, but definitely family!  I also take Zofran for two days after chemo and it has worked well for me.  Just remember that it is terribly constipating, so be proactive.

Bon-  I am so glad your Mom's doctors are finally paying attention.  Good for you to print out diet spreadsheets.  Unfortunately, hospital dieticians (likemost institutional ones),really have not progressed with the HUGE science-based thinking about food and nutrition.  I could not believe how pathetic and nutrition-free the food was when I was in hospital having a baby.  I made DH go out and buy me something that I could eat.  I NEVER eat things like powder pudding mix, canned fruit or Chef Boyardee!  Maybe they are trying to drum up more business by feeding people this glop.  Though I love bacon (who doesn't?), even I avoid it as it is certainly not healthy.  To feed it to someone who is having digestive issues is just stupid!  Good for your mom that you have her back.  You tell her that we all want photos of her dancing at her 25th wedding anniversary!  OHHH!  When you finish your virtual champagne in Central Park, meet me at the 72nd Street boat basin, the sunset is going to be spectacular tonight!

Latte-  You are not alone with the reaction to tape.  Even before chemo, I had the worst reaction to that plastic sealing patch that they put over my surgical incision.  I wasn't supposed to remove it for 48 hours, but it was red, itchy and irritated so I did.  The incision healed beautifully, but my skin, destroyed by the plastic tape patch took longer.  So many of us have reactions to this modern tape, I wonder what chemicals are embedded in it?

kitty- Yep, pretty lady....inside and out!You stick to your guns when you talk to your manager!

Ladies, sorry I have not posted in a while on this board but I have been reading posts and keeping up with everyone.  I am going next week for my rad onc consult to see when I can start rad tx.  My onc checked my hormone level and VIT D level last week and called today to tell me to pick up script for 50,000 units of VIT D and take 3 mths and recheck.  He is sure I am post menopausal after blood test so will be putting me on hormone blocker next mth when I see him.  I had a bone density test yesterday and it looked pretty good so that was good news.  I am not doing the taxotere tx's due to allergies to both the T and the steroids.  My onc thinks getting me on the hormone blocker may be more key than doing the taxane anyway because my tumor was highly ER and PR positive.  Hope all are doing as well as can be expected and I am sorry for all having such bad SE's.  I am 3 wks post AC tx's now so am feeling so much more myself.  Hope the rads don't knock the wind out of my sails but oh well!!!   

Bon, I have been reading and praying for you and your Mom.  My mom is a whole different story because she has dementia and most days can not remember that I have breast cancer, so each time we talk I have to go through that telling all over again.  She also has chronic "de javu" so anything I tell her she then says oh yeah,"I already knew that".  This is so frustrating but nothing anyone can do about it.  I am so glad you still have a functioning Mom and I hope she will be around for many more yrs.  Mine is 84 years old and had breast cancer herself about 12 yrs ago with no recurrence or problems with that since then.   Hope I take after her in that way but not the brain thing.

Chey, glad to hear you sounding better.  Keep hanging in there and one day you will wake up and think "I don't feel like crying today" and it will feel so good.

Jackie, I am thrilled that you are handling the taxol so well.  Rock on, girl!!!

Hi, Joan, hope you are also doing good.

Tmarina, Latte, VickyT, Designer Mom and everyone else that this brain refuses to recall hello and keep posting all these wonderful things to keep us entertained and get us through our trials and tx's.  LOL,gin2ca

Well, went back to work yesterday. Felt good yesterday, feel like CRAP today. Thank goodness the teacher aides don't have to go back to work until next Tuesday. My entire body is achy, kind of like the flu. My throat is killing me. I just feel miserable. This did not happen after my first dd Taxol so I wasn't expecting it. Last time I had joint and muscle pains, but not this entire body misery. Mentally it didn't help hearing everyone talk about the great summers they had and asking me how my summer was. I hope I'll be able to keep working through the last two treatments. Then of course I get to start radiation. I feel like this will never end.....  : ( 

I LOVE ALL OF YOU! ! ! !  I really didn't want to go, but I think I'll stay now.  My last chemo will be the first week of November.  Then I start rads.  My onc said I would probably have my first consult with a radiation oncologist in September or early October.  Didn't realize you had to have a separate rads onc. 

Bon - you and your mother are both precious.  It appears things are beginning to improve ever so slightly.  I pray they continue.  You hold your own with the docs and dietician.  You are your mother's voice right now.  I am amazed you can remember everyone here and write encouraging to them.  I've tried writing them down so I could address everyone, but I don't think I do it as well as you do.  

For whoever told me that the Odan stuff was Zofran, I do have Zofran.  I take a Zofran and a Decadron twice a day beginning the next day after chemo and for three days in a row.  I plan to continue that regimen when I start my new chemo in three weeks.  I also have Compazine and Phenergan to add to the regimen if the nausea creeps up even with the Zofran and Decadron.  I've only had to take a Compazine once.  

Hello ladies!!!!!  Just wanted to pop in here to say that next Tuesday will be my last Taxol treatment....YEA!!!!  Will have 2 weeks off and then as my Onc says,  the bad stuff will begin... 4 treatments of AC.,.,.:(.. Have to say I am scared to death to start these.. but then again I was scared to start the Taxol... Its just the unknown.  Met the radiologist this week, will have 33 rounds.  Soooo here's to nooo SE's this week and no pain from chemo... ( I wish)..  Oh and any advice on AC would be greatly appreciated!!!!  Is it as bad as they say????

Sandiddstn-->  I'm sure LOTS of us can give you advice about AC.  Here's mine: take ALL your anti nausea drugs as prescribed--don't skip any.  Most of us have a steroid and Zofran to take the first 3 days, then you might have others to take in between, and after those 3 days, as needed.  Emend is a great anti-nausea drug.  You might want to ask your onc. about it.  You take it the first 3 days (1 per day). 

 A few of us have experienced severe fatigue--can hardly get out of bed, and brain doesn't function!  Hopefully you won't experience this, but if you do, you just have to go with it.  I set up shop in my bedroom and would watch tv or use my laptop when I could, otherwise I'd sleep, or listen to soothing music.

See how it goes the first round--I found it helped me to plan out food and activities (select funny vids to watch, music to listen to, etc.) ahead of time so I didn't have to think about much during those few bad days.  If I didn't plan it out I'd lay in bed and not know what to do or eat!

Most likely you will have some fatigue, but probably not as bad as I had it--just want you to be prepared just in case! 

Chew on ice while you are getting the Adriamycin, its supposed to help prevent mouth sores, also rinse your mouth with baking soda and water.  Your chemo nurse will probably tell you all this too.  I used baking soda toothpaste (instead of rinsing)and that seemed to help.

Another thing you will probably be told is you have to drink LOTS of water after getting the cytoxin.  I think my nurse told me I should be peeing every hour!  Have a variety of liquids on hand, it might be hard to find something that tastes good.  I liked tart drinks, like orange juice and pink lemonade.  Also kool aid.

Well, that's probably more than you wanted to know!  I hope some others will jump in here and tell you what worked for them!

God is Good--all the time!!

sandiddstn - about AC: I didn't have any problem with drinking water like others did, but it knocked me out for pretty much a week (tx Monday, felt OK Tues, then sick as a dog from weds-Sun, then felt OK for the next week until the next tx). I was completely exhausted and couldn't focus on doing anything, just watched some tv and slept, couldn't concentrate to read books. I was very constipated (benefiber helped me with this), and had no appetite. I think i lived on plain yoghurt with fruit, and chocolate. But no matter how awful you feel, just remember that you can and will get through it and it is helping get rid of the cancer!

Was just bouncing around some of the other boards and had a new thought. I've been doing acupuncture every week since I started chemo. I stopped going after my last treatment because its so darn expensive! I really can't afford it anymore. Wondering if my side effects were being kept at bay with the acupuncture?

kitty-  I hope you are sleeeeeeping somewhere soundly!  I'm glad your meeting with your manager went so well. You may want to cover your tail with some written e-mails confirming your conversation.  I had a horrible experience many decades ago when I worked in advertising.  I was fired after 6 months due to "lack of productivity".  I had worked successfully for numerous corporations, so this was shocking.  I was so trusting and naive, I had not sent memos and documented my projects.  My supervisor took credit for MY project....hence "lack of productivity". Best thing that ever happened to me.  I went into business for myself.  Your people sound great, but as you have a long road ahead of you, it might just help to not have future misunderstandings if you have a paper trail.

I am just home after chemo #5 which they almost didn't give me because my white count is under 1,000.  Initially my Onc said I could come next week, but after checking said there were no openings because of Labor Day and the Chemo Inn is booked up.  She said the only way they could do it was if she admitted me to the hospital....NOT!   So after talking to my strong, calm, sure DH who said "take a chance, roll the dice"  I went ahead with chemo.  Onc wants me to start antibiotics prophylactically in a week as my white count is so low. I guess I will be even more of a Germ Cop than ever now. Already anyone who comes here is rushed into the bathroom to wash their hands!  "Oh it's so nice to see you, could you please disinfect so I can even get near you"!  Glad I finally got around to cleaning yesterday.

sandiddstn,  i did 4 rounds of AC every two weeks, i really had no side effects, i never felt sick, water tasted like crap and i did not feel like eating, for me it was the fatigue, i was very tired, so tired i couldnt even type, a dirrerent tired though, i also had a hard time with my emotions, after my last dose i slept for 20 hours then each day was better, dont be scared take one day at a time and take those meds!!! good luck, your almost there and we r here for you,.... can you tell me of your Taxol, im going in for # 3 on tuesday, and SE's how did u feel, did your hair start coming back? did u lose your eyebrows? mine are getting thin, any info would would be so great!!! i worry eack week, did your blood ever drop really low? that scares me to death. thank you

love Chey