Chemo in Nov 07

I have had a hard time with the taxol. The 2nd day when I got the Neulasta I had the the nerve pain in my hands and feet. I called the onc that night and they had me icing my feet to get me through the pain. I'm also taking the glutamine to help counter the nerve damage. Then the next day the muscle aches started in and now I'm on to the bone pain. I have been taking the pain meds, but they don't seem to help a whole lot. Last night I had a slight temp, getting close to 100.5 where they want me to go to ER. It does seem to be easing up some today, but the thought of this pain being cumulative is not a happy thought.



The case manager had told me that I would only recover about 90% of my energy after all is said and done. I was somewhat down about that, but then my daughter, who is not one to mince words, told me to start thinking about Lance Armstrong. Hello... we don't have to have our thoughts limited to some type of pronouncement about what this will do to us. Today I feel a long way from even 90%, but soon the txs will be over and it will be spring and there will be better days.



Everyone needs to keep posting. We all find a lot of encouragement and support in these posts. And we

've become a group that is concerned when we don't hear from one of our members.

Blessings to all for a good day,

Susan

Hi everyone, been awhile since I have posted but the last 2 a/c knocked the crap out of me. Started the first of 4 taxol and herceptin yesterday, no reactions as of yet fingers crossed. Good luck and best wishes to you all.

Lisa in VA - I was just having a conversation with my onc today about the hot flashes and night sweats.  I started having them when I started the AC.  I'm finished with chemo, but just started on Tamoxifen and it, too, causes hot flashes, night sweats, etc...  My onc said Effexor is helpful if the symptoms don't resolve within a month or two.  I think you are right, the black cohash is supposed to be helpful, too. 

I'm glad I'm not the only with sleeping problems.  I'm giving up the Ativan and trying the Valerian and Melatonin and if that doesn't work, will ask my doc for Ambien or Lunesta.  I've tried Tylenol PM and can do okay on 1 Tylenol PM, but 2 leaves me hung over in the morning.  Maybe the Camomile tea would be a good idea, too.

Who else will be have rads?  I should be starting early next month.  No reconstruction for me until I'm at least 6 months out from rads.  Another long year, but certainly better with chemo over

Take care,

Lisa (in CA)

Lisa (in CA), 

I have two more treatments left and then will start rads.  I've heard that radiation is not as bad.  My sister had it and mostly just experienced some fatigue.  I'll be going 5 x a week for 7 weeks.  How about you? 

Jenny,

I haven't tried taking anything for sleep yet.  I've never been one to take meds before, but maybe I'll try the Tylenol PM. 

Does anyone have to go on tamoxifen after this?

Patty

Hi guys.

Do you think that this cold weather makes the aches and pains worse?  

Are those of you on the taxol or similar retaining fluid?  I swear my tummy is sticking out like I'm pregnant.  I didn't think I had been over eating. 

Anyone losing their eyelashes or eyebrows yet?  I am a little.

Do any of you actually go out to like a movie or something other than just dinner?

Are your families getting tired of this too?  Maybe showing it a little even if they don't mean to.  My poor kids.  I can tell that the sympathy is weaning a bit.  They are tired of me laying down so much.

How close are we all to finishing the chemo?  I have 2 taxol left and no rads.  Just the ovary surgery and reconstruction.

Well, I can't really think of anything to say that is not self-centered or negative so I am going to take my vile butt to bed.

I do wish the best night and day for all of you.  And I hope some of your good attitudes and smiles rub off on me.

Love,

Lisa 

Hi Lisa.  Yes, I think my husband is reaching his breaking point - he has been so amazing but he needs a break.  My little boy is also getting very contrary - I think he is acting out because he's upset about me being so tired all the time.  But we can't help being tired and sick - chemo is intense!  I think our families are just tired because we are sick and they are worried about us and that's wearing them down.

I have my last chemo on Wednesday, but my treatment is the reverse from normal - I will have a masectomy in March and then radiation for five weeks in April and May.  Everyone keeps telling me that I have made it through the worst part by having chemo first - would those of you who have had a masectomy agree?  I am pretty stressed about the surgery, partly because I will have to wait about a year for reconstruction and am upset at the thought of how my body will look until then....

Sending good wishes and lots of love to all of you.

Sam :-) 

Thanks Susan - that is good to hear about the mastectomy.  As I said, I have to wait a year for the reconstruction (apparently that's just the norm in Canada), so I get to split the surgery and the recovery in half, I guess.

Another question for everyone:  any suggestions on how to unwind at bedtime?  I find that my sleeping pill (Zopiclone/Imovane) helps me to sleep pretty well once I'm actually asleep; but the last few nights I've been up reading and not at all sleepy until about 1:00 am, which is at least two hours later than I normally go to sleep.  What does everyone do to help unwind at bedtime?  Thanks for any suggestions you can offer, and thanks in general for all the supportive postings and good advice.  I was feeling quite isolated before I joined this conversation and really appreciate knowing that I am not alone in this.

Best wishes,

Sam :-) 

Ginny don't worry about whining.  We all have to do it from time to time.  It doesn't matter how many people are having to go through this, it doesn't make it suck any less.  The taste thing has been driving me a little crazy too.  It seems like everyone always brings great stuff to eat the week of my chemo.  I really appreciate it because it helps with my family, but I also hate it because I can't enjoy any of it and everyone keeps asking me how I like the food.  How many times do you have to say "I can't taste anything" before they get it!  See, you are not the only one on the whining wagon

Lisa - I am so with you on the swelling thing.  My weight keeps going up and down about 10 pounds and my diet hasn't changed at all.  My son even made the statement the other day that I looked pregnant.  It doesn't stay like that all the time, but any time is more than I would like.  I am praying that it is just another thing to deal with through chemo and it will go away when the chemo does, just two more for me.  I then move onto rads, but I don't find out how long that will be for another couple of weeks.  We have to wait and see if the chemo shut down my ovaries or not otherwise I will be having that as well.  I had a partial hyst. 6 six years ago, but of course the ovaries are still here.  As far as the movies, yes I do go.  We try to go to one of the early showings so that there aren't as many people.  I also don't eat the popcorn since it is open.  I do however still get a drink and I have even purchased the nachos since they are closed until you eat them since I can't have the popcorn.  Yes I am firm believer in the eating while watching a movie  

Sam you are not alone in the having to wait for reconstruction.  I had surgery first and I still won't be able to have reconstruction for about a year from that time.  I had the surgery, chemo, radiation, and possible ovary surgery.  My plastic surgeon said that he doesn't want to even talk about reconstruction until 6 months after rads are finished so that my body has the best chance for the best results.  I hope that helps with you feeling like you did things backwards.  Sadly no matter how we go down this road it doesn't always have the time-line we were hoping for.  Truthfully I have had that much problem with how my body looks.  It could be because I am so busy trying to get it to work   I was a full D, small DD before my double mast.  My surgeon did skin sparring so I have extra skin on my chest instead of completely flat, however nothing that resembles a breast.  I just keep telling myself that this is not me at the moment.  I am basically a character taking care of this body until my true body finds me again.  I am not saying that the new body doesn't take some getting use to, but it is just that, a body.  It is not who you are.  There will be days that you may even have to say that out loud, but it is important for you to know it in your heart.

Well wonderful ladies I hope you are able to enjoy your weekend. 

Keep laughing,

Jenny

Hello all,

Sorry I haven't posted in a while. Second a/c tore me up something bad! Had third a/c yesterday and not feeling too bad. I hate the smell of the chemo on me/in me. I can't seem to get rid of the chemo smell for at least nine days after treatment. No matter how many candles I light up or air freshner I spray I can't get that smell out my room, sheets or anything. Especially going to the bathroom (sorry for the visual), I have to hold my nose or I'll throw up. The smell is so intense. At least I don't have the mouth sores anymore. My appetite is becoming a challenge. I'm eating more than ever. My onc hasn't said anything about my weight so I guess I'm ok.

I went wig shopping yesterday at Contour Solutions. It's funny because the lady that helped me, goes to the same clinic as me. We actually set in the same room during my second tx. She is on hercepin right now and is glad that she's almost done. I can't wait to get to that point. Back to the wigs, it was so much fun! Because my husband is active duty military I was allowed up to $700 dollars for wigs. I was able to get two. They were hand tied wigs. Really nice. I also was able to get two new t-shirt bras and a form. I came home and looked up the manufacter of the wigs and the ones I picked out was $245 and $340. I would never spend that much of my own money on wigs! It's nice to be spoiled for a change, even if it's just a wig.

I'm really scared of the next sessions of chemo. My onc changed me to weekly taxol tx instead of once every three weeks. I thought I had a great tolorance for pain, but I don't know now. I've always thought I was a strong person....that said, I'm feeling really punkish just thinking about going on to the next step. Muscles pain, aches...bone pain ect. I don't know if I can handle it. I know a lot of you are doing it now, even with the pain and other complications, but I'm just plain scared! I've really had enough of this all ready! I know I can't just quit. But, it seems really tempting right now! Sorry for whining....

I hope everyone a blessed weekend

How many se's do these chemo drugs have to have? I know we all feel like we've had more than we can take. This whole chemopause thing has taken me aback... hot flashes, hormonal changes, what is next?



My taxol #2 is on Thursday. I'm going to need help to get there and a lot of focusing on the goal to get me through. I've felt fairly decent since the weekend and am not anxious to start with all those symptoms again. Last time I even reacted to the meds they give you so you won't have a reaction... I felt like I could jump out of my skin; I needed a couple of Ativan to get over that.



Is everyone having difficulty sleeping? I am awake every two hours.



I am encouraged by Lisa and your report that you a feeling well 3 weeks out. I can't wait to be done and feel a part of life again. I'm ready to be happy and feel well and want to do things again while not waiting for the next chemo treatment. Hopefully, soon we'll all be reporting how much better we are doing.



I think of you all often and pray for you when I'm laying awake at night. Blessings to all.

Susan

Hello ladies - I just found this site and am glad to hear that my experiences are common. While not a 'club' that any of us would have chosen to join, we are here and when it's not so lonely, it seems do'able.



A tad background ... had a 4.1 cm tumour in the right breast, 11 nodes removed with 1 positive. Had a bilateral mastectomy (removal of the left breast was my choice) on September 24 and had my first chemo treatment on November 7. Like Karyll, I'm on a regime called FECD - seems like the Canadian version of what you ladies are speaking of. I have now finished session 4 - my first round of the "D" which is Doxetaxol. I have 2 more sessions to complete with the next one scheduled for February 7.



I must admit, this round has taken it's toll on me. I realize that chemo is cumulative and maybe that's the reality that is catching up. I find myself more tired and less focussed. My white cells have taken a plunge much quicker than the last times. I have struggled with mouth thrush (yeast infection) and painful finger tips - it feels much like someone took a hammer and banged my nails.



I have benefit of sick leave and long term disability which has taken the burden of pushing into work through the treatments and allowed me the privilege of rest and recovery and focus on beating this challenge.



I am a single lady with no family and live alone. This experience has humbled me greatly. I am fiercely independent and can "do anything by myself" ... maybe that's my lesson. None of us can do this alone and I have been overwhelmed by the number of friends and co-workers who have stepped up and made this journey much more bearable. As one of my neighbours said (rather angrily when I said, no, I'm fine - ha ! not really fine but that's the answer many of us are trained to say) ... while "help" is a four letter word - you'd better get used to asking for it ... I am slowly trying to get there although it is a daily struggle.



I appreciate all your experiences and value the real, concrete tricks and suggestions. I will do the mouthwash thing - I don't want to go through that again.



Anyways ... hello from Victoria, BC, Canada (where it is green and relatively sunny - ha!!) and everyone take a bow for getting this far ... we are indeed warriors - warrior princesses.



Laura in Victoria

Samantha, Even though the mast is earlier than you expected, you'll be done sooner that expected also. Maybe in time to enjoy spring and let the warm weather cheer and heal you. Healing thought to you and best wishes for a succussfull surgery. Thinking of you.

Susan

I'm not good with the shout outs to everyone but know I keep you all in my thoughts and prayers.  

Sam - good luck with your surgery next week.  I found the recovery pretty easy.  I found it harder dealing with the body image than anything, but that, too, passes. 

Jay66 - so sorry you are doing poorly.  I never had the herceptin so I don't know what that's like, but I do remember the pain associated with the Taxotere.  I agree with your husband, talk with your onc and see if you can come up with a solution.

Hope everyone else is doing okay.  I have my appointment with my oncology radiologist next Thursday so I'm moving into the next phase.

hugs all around,

Lisa (in CA)

I thought the taxol treatments were rougher than the AC. I had the 2nd of 4 taxol on Thurs. The aches and bone pain are more than I anticipated. It does help to keep reminding myself that I've made it through 6 txs and now I only have 2 more to go. I pretty much know the weekend after tx is a washout. I just lay around and watch movies and do a lot of nothing. Sleeping is even difficult due to the steroids. I would love to just sleep through the entire weekend and then begin the rebound, but that is even out of the question.



Girls we've made it quite a way now and we have to keep focused on the end goal. If you read posts from others that are further out, they are encouraging about how we'll feel even a couple of weeks past the last tx. I wish this weren't so hard on us, but we are getting through and can begin to see the end. We have to keep believing for the best!

Susan