Starting Chemo April 2009

 Tulipbebe,    

Really?  Your hair was falling out before DX too?  Were you losing weight as well?  I even lost my derriere!  Suddenly went from a nice bummy to a flat bummy for no apparent reason...Maybe they need to start a research project on this???  I am being seen at Roswell Park Cancer Inst. here in Buffalo NY.  They have been wonderful all the way around and I feel confident with the care I am receiving.  I feel so blessed to have a research center 1/2 hour from my house.  Isn't it great to know that we are not alone with some of the weird symptoms we have been experiencing?  It certainly does my heart good!  Thank you!  Tammy

Hi everyone!

My name is Pam and I am so thankful for everyone on this website.  I spend my entire day on this and I have found it to be a Godsend.  I too will be doing chemo the 2nd week of April due to my OncoDx score of 35.  I will be taking 4 TC's and radiation following the chemo.  (which I do not understand why radiation is required after chemo, any thoughts????). My onc told me that the chemo I will be taking has less side effects but, what I have learned about taxotere I find that hard to believe.  I am also entertaining the idea of having a port installed in my arm.  I am terrified of needles!  Does anyone have a port and what are any thoughts on a port? Also, is there anything I can due to build up my immune system or whatever else to prepare for this journey we are about to undertake?

Thanks to all of you!

Pam

Hi Pam, welcome!

I was told that radiation is a MUST if you have a lumpectomy (my situation). If you had mastectomy then it depends on your individual risk e.g. was the tumor close to the skin or chest wall (which means you would be at risk because they can't go too far when removing the tumor). 

I just got my port implanted today. It is in my chest about 3 inches below the collar bone, so it won't show under all but the lowest cut tops. It felt like someone kicked me in the shoulder straight after the procedure, but now (after about 3 hours) it feels fine - but maybe that's the vicodin! Oh, and I have to keep the dressing on and I'm not allowed to shower until Saturday! Good excuse to use the jacuzzi tub for a change.

I've had about 20 needle sticks over the last month for tests/meds and I could feel the effects on my arm veins getting worse with each one. The IVs for my surgery and port implant (in my hand) were painful and made my hand and arm feel freezing cold - I'm hoping the port will make the chemo much easier.

I started losing weight as soon as I found the lump (I put it down to anxiety) so far I've lost 10 lbs but I'm not too unhappy about that - just wish some would go from the thighs!! I also noticed some other weird stuff, like my sense of smell was suddenly more sensitive to certain things - one day I left a half glass of wine on the counter and the next morning the smell of it was overpowering to me.

My onco nurse said it was very important to have a healthy diet with plenty of protein as the white blood cells need that to rebuild after treatment. And of course over the next couple of weeks be careful to avoid sick people as you don't want to be starting chemo (they may even make you wait) if you get a cold or flu!

Hope everyone is well, Lou.

Greetings.  I will be starting my chemo in the next two weeks.  My doctor has recommended TAC for 6 cycles.  I am nervous but ready to get this thing going.  I have been thinking about the clinical trial with avastin (5103) but I am not sure.  Is anyone else considering this trial and if so why?  By the way, I have purchased two hats and one wig!

Hi everyone,

Met with onc today chemo starts April 2 so it looks like I will be joining this little group and hope we will all get through it together with as few SE's as possible. I also had very long hair that I just cut short in prep for this lovely ride and everyone loves it they say I look much younger great I'm only 43 how old did I look before LOL.. oh well. My biggest worry is my veins holding up I have tiny little veins but Onc seems to think port not necessary for 4 treatments I certainly hope he is right. I am doing 4 rounds of TC and hope that will be good enough as it seems most trip negs get AC or AC/T but he feels heart risks outweigh benefits with no node involvment. Best wishes to all of us on this ride.

Hello,

Met with the onc today and looks like I will be starting TC x4 on April 3. Was given a choice between that and FEC x6 (and have until Monday to choose), but figure shorter may be easier (although my onc said TC is a bit tougher each time). He said I don't need a port for this, but will need a neulasta shot each time. I only had shoulder length hair but cut it short a week ago to get ready--have a wig appt tomorrow. I think I like the short hair better on me, although it is difficult to get used to. I'm 43,so wondering about whether it will kick me into menopause--guess it will just have to be a surprise ;-). 

Thanks for starting this thread - would love to stay connected to others going through treatment during this time.

aoandrews43- I am also 43 and doing 4xTC my Onc told me it would probably put me into menopause said usually anyone over 40. For me this is not an issue but if it is for you, you can have your eggs frozen.

jax65--Menopause also isn't an issue for me in terms of kids (I have an 11 year old and 2 dogs--enough for me), but I am curious as to how others have managed the transition into menopause and the symptoms that come with that--I hear that is one reason people gain weight during chemo and tamoxifen.

 When do you start your treatments?Mine start next Friday (April 3).

Okay some updates on questions I asked the Onc nurse this morning on the phone...I asked should I shave my head before the first treatment.  She told me everyone is different...some do and some don't.  She of told me that some won't start loosing their hair until 3-6 weeks after their first treatments.  She told me some start to loose their hair in the first week. So I have decided going to keep the hair and wait until it starts to come out then...shave it off time.  I did ask if its painful when it starts to come out and she told me some have pain, others have a weird feeling.  I asked if I needed Ensure or Boost...she told me its ok to have or wait and see.  I am of course going to wait and see.  I am a coffee and Diet Pepsi drinker...she told me to make sure to drink a lot of water and juices to replace what caffeine takes out of the body.  I asked about being sick after chemo.  She told me some folks have no problems and others have a wide range of problems.  I am of course wishing for the no problems end of it...however she told me that anything could happen.  Now that is pretty wide of a statement, but then who knows until I start doing all of this.  I am working really hard on keeping a good outlook on all of this...you mind over matter.  I seem to be shaking a lot, nerves.  I have been on Premarin for about 30 years give or take.  I had a total Hyst when I was in my 20's.  So that beautiful yellow pill prevented me from hot flashes and so forth.  After my surgery I was told no more Premarin.  Lucky to not have periods and so happy to not have hot flashes.  The hot flashes seem to come when I am really tired.  So I have found when I feel tired to rest now!  Also a cold wash cloth to wipe my face and lay on my neck seems to help. 

One of the things I saw on the video that my Onc loaned to me to watch was this...When we go to the bathroom it is important to put down the toilet lid first, flush two times and leave the lid down.  This is to prevent airborne chemo.  It also says that we will pass chemo thru our urine so this is the reason for this...don't want to share airborne chemo with others.  Also if you have pets or small children this is another way of making sure they stay out of the toilet.  My daughters are all in their 30's but sure remember those times they decided to play splash splash in the toilet.  And yup animals also think its a watering hole. 

I am like so many of us a mother, wife and grandmother.  We learn early on to be the caregiver in our families.  I am learning to ease up and let others help me.  Yup, asking for help is hard.  On the asking part also...I am one of those "read my mind"...you know that thing, you should know how I feel or what I am thinking.  I am changing that and now if I have questions I will ask.  If I hurt or feel sick, I will tell the doctor and nurses...COMMUNICATION! 

We have a strong bunch of ladies and we are all together in this and we will get past this. 

And as I have mentioned many times and will continue to say is: Many hugs to everyone. 

Nadine

Jax65

I sent a private note to answer your questions more directly, but forgot to mention that my doc said I do not need a port since only 4 times. My veins are fine, but not great, so hopefully you should be okay.

Nothing important, just an observation:  We are all so very young......at least in BC terms- I couldn't wait to not have to buy sanitary products any more, but never dreamed in a million years that this would be the reason....

Ok first question of the day to all is "What is DH"?  I have to get with the BC lingo.... Also why do some call them "FOOBS"?  I have figured out some of the abreviations but not all yet....

Florida here.....

Sakura: GREAT HAIR!!!!

Thanks on the tips for chemo shopping... Not sure when I start but should be soon.... meeting with Onco tomorrow...

Also has anyone at all experienced SEVERE itching in between the breasts after surgery?? I have tissue expanders, no rash or anything and no redness.. just itching.. Onco thinks it could be from healing or expanding.... ITS CONSTANT!!!!!  Any thoughts...?

I just had a power port put in yesterday--placed on the left side of my chest below collar bone.  The procedure was fast and not bad.  I was sore last night and a little this morning.  I having been taking pain meds for it.  I am glad it is over (anticipation is worse than procedure).  I am waiting for a start date for chemo--I will have chemo on Thursday since I work.  My 14 year old daughter is off to Greece next Friday so I will most likely start on April 9th--I don't want her last image of me sick from chemo!.   Is anyone else getting TAC?  Picking up my wig next Tuesday!  Hope everyone is well. 

If anyone is in need of hats a good place to go is www.heavenlyhats.com this is a free place.  I  went there and sent a request for 2 hats and got 5.  My resource room is closed where I will have my chemo due to remodeling.  So I will take the hats I probably won't wear to the doc's office for anyone in need of a hat.  My oldest daughter is 35 and lives in MO and I live in Idaho. She is like the rest of us researching all of the time.  Poor girl don't know how she works, takes care of a family and still has time to do anything else.  But you know like she told me last night, knowledge is a good thing.  I thought I had seen every site there was and she keeps finding more and all are interesting and informative.  I will try and make a list of many sites and post later.  One of the things which is nice about the net is that I can use the webcam and model hats, wigs and such for her.  She told me I seem to be in better spirits.  Pretty funny in a way when modeling hats and such for the no hair day is actually fun.  With the big day coming up she keeps me laughing...we have plenty of deep conversations.  I am finding my husbsand doesn't say much but listens to me.  I try really hard not to talk all of the time about the treatments, that what if's, the what to do's and so on.  As the days get closer to April 1st start date, I see an increased sadness and pain in his eyes.  Yesterday when we picked up the package of hats there was a letter enclosed, this is part of that letter: "All of our volunteers here at Heavenly Hats wish you and your loved ones the best and please know that you are in our thoughts and prayers.  May these hats be a small symbol of hope for you through your journey".  I was reading this to him and I got where I was having a hard time talking and the tears wanted to flow...Like I told hubby, we are in it together. Us as the patients, our families also.  We go down this path hand in hand and hope for the best.  I am lucky to have a husband who wants and is active in every part of this starting with that first visit to one doctor and the wide range of other doctors etc.  Sometimes as we all know I feel alone.  But I try hard to make sure he knows how I feel and when I just want to ramble.  We have a strong marriage and it seems all of this has brought us even closer.  I get tired real easy still and he is so helpful in doing laundry, cooking and such.  There is no way to take away his fears, sadness or anything however the one thing I am aware of is love those whom we love like we never have.  I am learning patience within myself and with others.  Yup there are those moments when I shake bad and I get pretty pissed, but for me venting and then letting that moment go is helping.  I have done a ton of additional research on the chemo drugs that will be used for me, I am fully aware that I won't be one of the ones who will have the easy side effects.  But no matter I am marching forward and knowing it will pass.  I started already the better eating habits, drinking tons more good fluids.  May not feel like eating in a short bit so trying to make sure the body is as healthy as possible before I start and with luck that will help.  We figure we can't prepare for everything but I think we are as much under control as we can be for now.  Pretty much wait and see and then we will know what will be needed as it comes.  Like I told hubby I refuse to turn our home into a hospital. 

Well my friends, hope you are all doing well.  And know you are all in my thoughts and prayers also.  Keep smiling and laughing.