Chemo May 2011

Barb_in_BR

I went for what I thought was my first treatment today....and apparently the nurse failed to mention how "things are done" at the clinic I'm going to.  So, tomorrow, I will get my first treatment.....and I am so frustrated right now.  I did see my oncologist today and my labs are good.  

My schedule will be crazy, but on Mondays I will have labs, Tuesdays see the oncologist to go over labs, Wednesdays I will have my treatments and Fridays will get a Neulusta injection.  That will tie up a whole week, so will just plan to take a full week off work, every 3 weeks.  While there are a few days in there I could work, I think I will take that time for "me"....

And I got the results back from the SNL biopsy last week....there were 3 lymph nodes removed and one tested positive.  I see my surgeon tomorrow before I go for my treatment, so we will discuss what's next at that time.

Right now, I am so emotionally, mentally & physically tired....will be back later to check in on everyone.....It's time for a nap! 

Loviesmom2

Oh well, had 4th infusion of taxol yesterday and finally this morning half the hair brushed out. Guess I gotta get it cut. Also, WBC tanked and ONC got an attitude problem or just no bedside manner. Veins starting to get annoyed and nurses would rather you have a port anyway so they don't have to work so hard to access a vein. If my counts go lower they'll hold my infusion next Monday. My question is why can't I have a neupogen or nulasta shot? Snippy ONC asked my how was my iron and I thought she was talking about my iron stores on the CBC printout, I said it's still pretty low and she snapped "what are you talking about"? Seems to me a better response to miscommunication would be "oh I'm not understanding" or something, but not frown up your face and shake your head while exclaiming "what are you talking about"!? I wanted to walk out on her bad day but I smiled and just explained myself. What a day.

Jan244

I started Taxotere on May 10th.  The Onc told me my schedule is one infusion each week for three weeks and then one week with no chemo and then start again.  I'm taking dexamethasone 12 hours before infusion and again 6 hours before infusion.  The first and second weeks weren't bad at all as far as SE are concerned so Onc said I could reduce the amount of dexamethasone before my third infusion.  I'm kind of afraid to reduce it (I have my third tomorrow) because this week I've become best buds with the bathroom, not really diarrhea, but close.  What do you guys think?  Should I complete this first cycle using the same dosage or do you think I'd be nuts to reduce it so soon.  Any advice would be welcome!

Anonymous

I wish you all well, if you have been feeling bad, hope you feel better and hope upcoming treatments go smoothly, but this post is really for Candice.  I have been Stage lV since 1998...you will get treatments the same way those who are Stage l, 2 and 3 do......and you possibly will go into remission just as any other stage will do.   Regardless of stage we are really all in the same boat because there is no cure.  I am really sorry you got hit with the Stage lV diagnosis right off the bat, but you can do this....you have to...you need to see that little girl graduate from high school.  I am saying prayers for you and all the rest of us. 

Loviesmom, I missed your post somehow....I don't know why they can't give you nupogen or neulasta either, but maybe they don't use it with all chemos.....my White count used to get down to 1 with other chemos, but they never gave me neulasta or anything else until this halaven that I am on now.  The way they talked to you was just downright rude.....you are paying them so it is not out of line to expect common courtesy. 

Loviesmom2

Barb your schedule is nuts. Is that the best they can do, a full week?

Laureen I really hope your SE's are much less this time since you've been there done that

Candice you gotta get those legs strong and pain free so you can KICK BUTT!!! You and your DH will be closer and stronger after this is over. Pray much and stay encouraged. Remember not to get caught up in the numbers. Fight like you're in it to win it! Come on girls let's fight, win and go on to help the ones coming after us because we all know there will be more women who will need our testimony of success.

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Beaglesgirl,

I take advil for my sinus headache from Cytoxan, but I guess Vicodin is much powerful.  Go for what works for you!

Regarding the stool softener issue, I take Colace once in am and once at pm as instructed by doctor.  i have tried Dulcolax once a day and was as effective as colace when taken twice a day.  i have prune juice handy just in case i need more, hehe!

i'm glad to hear from you, keep in touch!

Laureen 

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Loviesmom2,

Today is my 2nd day post #2A/C.  So far, nausea and headache are down to mild range but i'm asleep most of the time perhaps from the meds.  I sure hope this second round treats me gentler as I had 7 days down two weeks ago with my #1.

How are you?  When do you come back again?

Laureen 

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Candice,

I am saying a prayer for you.  I am still equally proud with your optismism and serenity amidts all these on your plate right now.

Laureen 

40-years-old-now

Susie

I hope you get better soon. Oncologist told me that when doing chemo I need to drink a min of 2 liters of water a day, more is better.

Try to get better soon.

Candice

Patriotic

Candice, you are tough. I was a blubbering mess the first week after diagnosis-virtually unrecognizable to my DH and kids. My kids had never seen me cry. So, I had my "pity-party." You need to grieve your former life, in my opinion. Then, it's time to get down to business. You'll drive yourself silly if you focus on the why and how. When, I'm with my kids and working, there are lovely blocks of time when I actually forget I have BC. It's also weird because I do not feel sick. But, once you start chemo, and begin to see the results, you"ll probably look forward to the chemo days. Sick, huh? I never thought that would happen.



Everyday, I have to remind myself of all the things I am thankful for. Hang in there. Best of success with the chemo. You'll do great.

Cyborg

Candice. Dang it!!!!!' li am sorry about lung biopsy results. The sooner the known the better so on with the chemo!!!!'{{{{{{Candice}}}}#

40-years-old-now

Thanks,

I think because I am not currently working it is actually making it a bit harder, because I cant escape into work. But then again I dont have to worry if I have a bad day.

Oh I have to take off the nail polish because I am having my MUGA scan tomarrow.

Hubby is next to himself because he wants to do things with me but know that walking is not good right now.

I still having had a major break down. I thought that when I found the lump it was breast cancer I just wasnt expecting it to be mat.

Candice

40-years-old-now

Yes not really something I wanted to know, but I guess it is good that it was found now and not 2 years from now, which is when it would have been looked at by a doctor.

Keep positive.

Loviesmom2

I do taxol every monday but next one Is Tuesday d/t holiday Monday. I just want to keep going while I'm going. 20 weeks of chemotherapy sucks but especially when they want to stretch it out longer. My tax is low dose that's why it's over 12 weeks but my AC will be full dose every other week. Now I feel like I'm on board with you guys because I have a few SE.

solds19

Laureen - So glad to hear you are doing ok (minus the headaches) from round 2.  You and BKJ66 are my trailblazers!  I go in tomorrow for round 2 of my A/C.  I am on day 12 today and had the first few clumps of hair fall out.  My scalp is feeling pretty tender.  May wait another couple of days and then buzz it.  I was told not to shave it completely so I'll give the buzz a try!  

Prayers for all of you!  Keep fighting! 

40-years-old-now

sold19-  I also hear not to shave completely but to use a 1 guard on a razor.

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solds19,

Goodluck tomorrow!  i'm having a buzz cut myself tonight.  Hair started falling off yesterday, day 15.  Keep us posted tomorrow.

Laureen 

ruth07

Hi - I started chemo in May 14th - doing AC every other wk- I am having my last A/C on the 31st then will start Taxol for the next 4 treatments.  Is anyone else having a hard time w/ this chemo stuff-it has been terrible! I feel sick & dizzy most of the time & the headaches are bad! I too was a complete mess my 1st one but dealing a bit better w/ things even though I feel yuck!  Can anyone tell me what the taxol will be like-better than this? 

DebRox

Just got in from my first TC and feel pretty good.  A little tired due to the benedryl infusion.

Ok vets, when I start to feel like crap?  I take steriods tomorrow, 2 pills twice a day.  But so far sailed through without any problems.

Plils

DebRox,

Glad to hear things are going good so far.   How long did it take??

ruth07, so sorry to hear you have had a hard time, I hope things get a lot better for you.  It can only get better right??  Good luck.

Barb_in_BR, sounds like you had a rough day, that sucks I hope everything goes better next time for you.

Pam 

CiaoVino

DebRox - after my 1st round of TC, i felt crappy almost exactly 12 hours later. and i stayed crappy for about 5 days. BUT...i am ultra-sensitive to drugs. regardless, and not to sound dramatic, i was on my bathroom floor most of that time. either with the "i'm going to puke" feeling or "i'm going to have massive diarrhea" feeling. both for me! my friends now ask "on a scale of 1 to Bathroom Floor, how do you feel?" i DID feel semi-back to my old self a week later.

I finished TC #2 last Wednesday. My best friend flew in from san fran (where she ironically is an oncology nurse) to take care of me, do my laundry, take my dog out, etc. WHAT A HELP!  thanking my lucky stars for the amazing people who are in my life right now. i need to throw THEM a party when all this crap is done. ANYWHO, this time around they gave me emmend and aloxi. wow. what a difference. i felt a little funky for a few days but otherwise, 100 times better than the first. no joke. i live in chicago and today felt good enough to walk up and down michigan avenue a few times (well...and for retail therapy). so...it does get better, everybody.

 hang in there!  

bak94

I just want everyone to know I read each and every post, and send my best to everyone. I think it is crazy that so many of us are going through this, and this is only women starting chemo in May that know about this forum! The numbers are crazy.

Laureen and solds19, yep, we are close in schedule. I just want this tender scalp to stop, it is so weird! Hubby will shave it with a a guard tonight, it does stop being tender eventually doesn't it? I seem to remember from 8 years ago it not being tender the whole time. My hats and scarves should be here within the next 2 days and I ordered a wig online that should be here next week, hope I like it, they will exchange if I don't like it. I am going to try to work on Saturday, but just one client, my sis! It will be a good test to see if I can do hair while in treatment. If I get weak I will have help available. I think I will try to work a day or 2 every other week when I feel ok. I think the social aspect will be good for me, I feel so alone here at home all day by myself. Oh well, I have my dogs and chickens!

Robyn_S

{{{{{Candice}}}}} you are a strong woman and stay so positive that you inspire us all! Positive thoughts and well wishes sent to you for a smooth journey back to a cancer free life!

Following a 62 hour fast I had my 2nd FEC infusion yesterday which was earlier appt and quicker this time round so home by 2 pm and feeling pretty nauseas by 6 pm which was the same as last time. I ended up taking a sleepy pain killer for the emend headache and in bed by 9.30. Slept like a baby and woke feel really good today with the nausea subsiding to treatable levels. I felt energetic enough to wander around the new local hardware store for an hour and broke my fast at 12 (24 hrs post tx) with a homemade chicken soup and bread roll- delicious! Last time I had the worst changes to my sense of smell and taste that only the blandest food tasted ok- this time my smell and taste is unchanged so far so I hope it stays that way! Another plus so far compared to last tx is that I don't have the crampy, brick like feeling in my gastro tract like last time. ( I call it gastro shock)

Advised to have 3 liters of fluid daily to flush system out which helps- water with lemon, lime or

mandarins slices and a little sugar is my favorite!

My hair at day 22 is thin all over but happy not to cut buzz shorter as I have a bit to poke out under the hats that looks less cancer patient like! I brush the loose hair out each day with a soft rubber pet brush in the garden and use it on the clothes, the furniture etc lol. The sore scalp has passed and it feels okay now- gently does it!

Cyborg- how are you doing with the fast and your treatment symptoms? Hope you are finding it easier and helping with the SEs.

Hoping everyone is coping well and the SEs are manageable - one step closer to cancer free!

twistedsteel

How's this for irony?

My insurance is an HMO through a group of university doc's very invested in research.

My cancer center/oncologist is part of a study using Sutent as a drug along with a chemo protocol to reduces chance of mets. There is no additional cost to the insurance for my study participation. The drug would be furnished free of cost and the standard of care while on the study is the same as if I weren't on the study. So cost is the same.

I am perfect for the study, was accepted for the study...  and my insurance will not only NOT cover me in the study but if I AM in the study, they will cover NOTHING regarding the BC diagnosis.

The drug is even on the formulary for the insurance. But for a different kind of cancer. It is about 2k a month if I wanted to take it and privately pay. But it would be free, entirely free, for me on the study. No copay bc the insurance would not be paying for it either. CRAZY!!!

The customer service person admitted she saw the irony, but said the state was who determined what was covered as this is a "private/ state run" program. Basically I pay money for our state's form of Medicaid. We are self-employed and this is affordable coverage for us.

I guess I am grateful I have any coverage at all, right? 

Cyborg

BKJ 66 the scalp sensitivity stops after the majority of the hair came out. The cut should help. I



Debrox- I felt gross at day 5 but the steroids carried me through with strength for a few days after infusion of TC. Everyone is different. The steroids in pill form vs infusion seem stronger.

Cyborg

Robyn- my first meal was horrible tasting. I only fasted from Saturday nite til today. Very little nausea.

Cyborg

Twistedsfeel that sucks!!!

Steff66

Hello everybody, thank you for all your comments! I started chemo last Friday, 20th of May. Hope for the best. 18 weeks, 6 rounds of FEC 60. I did it because test showed high Ki67 and St. Gallen consensus conference 2011 recommends chemo for this condition. Only problem is I have lobular cancer which according to same conference does not respond well to chemo. Needed to read a lot because doctors did not want to give me chemo despite the Ki67 test. I found out that I had read too much and it just scares me and I do not want to live just being scared all the time. I have decided to stop reading all about my particular condition and just live. The kids need me and I have been away in my mind for too long. Ordered whig, have bought scarfs and will live! Hugs to all of you!

Robyn_S

Hi Steff, there are quite a few in our group here that have ILC and personally my oncotest number was a low 10 which I indicates that recurrence risk is low and chemo is not indicated. Treatment plans all come down to the individual. I have full trust in my doctors and they have listened to my concerns and feelings. My prophylactic mastecomy (had BMX) returned multifocal LCIS even after being cleared by MRI. I refused axillary clearance even after the SNB returned a positive met in 1/5 as the latest research showed that it would not make a difference in 5 year survival. And chemo was recommended by my doctors based upon tumor size- 8.9 cm & 1.6 cm, age 46 and being premenopausal as well as the decision to not clear all lymph nodes. I spoke to the radiologist and suggested that the axilla should be radiated as well as the chest wall and she was positive about that especially as you only have one go at radiation.

It all comes down to being aware of risk verses benefit in each treatment option and the level of risk is based on each patients individual and unique clinical presentation. Too much research can send you loopy! There is so much information and it can grind you down trying to learn everything there is to our disease!

Looking forward to a life beyond cancer keeps me focused! Well that and the kids and grandchildren! One day at a time! ((hugs))

Robyn_S

Hi Steff, there are quite a few in our group here that have ILC and personally my oncotest number was a low 10 which I indicates that recurrence risk is low and chemo is not indicated. Treatment plans all come down to the individual. I have full trust in my doctors and they have listened to my concerns and feelings. My prophylactic mastecomy (had BMX) returned multifocal LCIS even after being cleared by MRI. I refused axillary clearance even after the SNB returned a positive met in 1/5 as the latest research showed that it would not make a difference in 5 year survival. And chemo was recommended by my doctors based upon tumor size- 8.9 cm & 1.6 cm, age 46 and being premenopausal as well as the decision to not clear all lymph nodes. I spoke to the radiologist and suggested that the axilla should be radiated as well as the chest wall and she was positive about that especially as you only have one go at radiation.

It all comes down to being aware of risk verses benefit in each treatment option and the level of risk is based on each patients individual and unique clinical presentation. Too much research can send you loopy! There is so much information and it can grind you down trying to learn everything there is to our disease!

Looking forward to a life beyond cancer keeps me focused! Well that and the kids and grandchildren! One day at a time! ((hugs))