Starting Chemo Aug 09

jenn3

Starting Chemo Aug 09

jenn3

We've recently added a name to our August group - thought it would be best to start it out on top.  WE ARE THE AUGUST AMAZONS and are ready to fight this fight.

Hi - I just recently joined in and have been reading many many post along the way.  All have been so supportive and I'm hoping to connect with people going through chemo at the same time I will be. I would also love to hear from anyone with support and information. 

All of this is new to me - it's like taking a crash course.  Hurry up learn the information and get tested. I went in on my lunch hour for my annual mammogram thinking I would be in and out within an hour like I had in the past.  I knew I had a lump, but wasn't concerned.  I was certain it was a cyst because it was painful and I had heard if it was painful it wasn't cancerous. The nurse had me in the vice grips on the right and asked if I was there for a regular exam or had I found a lump.  I casually mentioned I had found a lump and that I was sure she would see it on the exam.  I then said something to the effect of that I knew they would have to biopsy the lump, but was sure they would call later with the date.  Four hours later and a date in hand to return a few days later for numerous biopsies still didn't have me in the least bit concerned.  However, after the biopsies and the results reality hit -  Wow - me - cancer - I have to join the pink group.......  How can I have cancer?  I can't have cancer, I'm only 43 - it's my youngest daughter's senior year of high school, I don't have time to be sidelined?   Well once I faced it, laughed a lot (which is my way of dealing with stress) I decided to head to the websites that could give me information and support.

Since the date of 06/12/09 I've had a bi-lateral masectomy, dx with Stage IIIA, Triple Negative Breast Cancer, signed up for clincial trials and am due to start chemo the first week of August 2009.  I will be doing dose dense AC for 4 cycles followed by Taxol for another 4 cycles. Following chemo I will do radiation, but don't have that schedule yet.  The clinical trial is a double blind study of Bevacizumab, which I'm hoping to be lucky enough to get. The study is to see of the Bev will reduce the rate of recurrance. 

jenn3

In preparation of my hair loss I went out and found a wig that was an exact match to my hair style and color on my first try.  I also bought some scarves, which are custom made by someone locally and she sells at the shops.  They fit wonderfully to the head with a small attachment to tighten or loosen them.  In addition I bought myself a night cap - I've heard the head gets cold at night when you sleep.  Then I went to lunch with my Mom. Today almost felt like a normal day. 

Karen09

Hi Jenn! 

I tried to post a big long message here earlier but I lost the whole thing.  Don't know how that happened but I will try it again!   

My name is Karen.  I'm 31, no kids, not married but I have lots of terrific friends and coworkers helping me out.  I don't know what I would do without them.  My mom died of uterine cancer 15 months ago so that is definitely on my mind as I'm starting this journey myself.  She fought like heck against her cancer and I certainly intend to do the same. 

I had my lumpectomy in May.  It took a long time to get my diagnosis back and last month I got the news - metaplastic invasive ductal cancer, triple negative.  Metaplastic is quite rare and makes up about 1% of breast cancers.  I had lots and lots of tests and did lots of waiting and finally I am having a partial mastectomy on Thursday coming up and also a sentinel node biopsy.  Hopefully I'll finally know the stage after this.  Then I'm starting chemo sometime in August.  I'm having 8 treatments - epirubicin, taxotere, cyclophosphamide and fluorouracil.  Then radiation, then maybe more surgery and some hormones therapy.  My doctors told me a total mastectomy isn't necessary but I'm debating going ahead with it after this is over anyway.  I just have a nagging fear that I should do it but we'll see.

I know what you mean about this experience making you more optomistic suddenly.  I've been the same way!  I'm mostly positive about it all and trying to enjoy my life despite the news.  I just don't want this cancer to get the better of me - body or spirit.  But I still do have my bad days and my anxious days.  I'll just be glad to stopping waiting and have things started finally really. 

I bought some scarves and hats too to get ready.  I love my pink hat the best.    I don't think I want a wig right now but I can always change my mind.  I have my mom's little soft knit cap that she wore when she slept when she was going through chemo.  Can't have a cold bald head in the night!  That sounds worse than cold feet in the middle of the night!  lol 

A coworker of mine is a breast cancer survivor and she told me to make sure I have some flavoured hard candy with me when I have chemo.  She said she got a metallic taste in her mouth during the treatments so that's something to keep in mind. 

Anyway, I should go for now.  It's nice to meet you Jenn and I'm glad you started this thread for all of us starting chemo in August.  I hope we can all get each other through this!  Take care!

Karen

jenn3

Hey Karen - glad to hear from you. I'm really sorry you lost your mom such a short time ago and are now facing this.  I've not heard of metaplastic, but will look into it.  I am still learning soooo much. I know what you mean about feeling like it's a waiting game or everything is on hold.  I sometimes find it hard to make plans because I'm not sure what appoitment will be scheduled when. It's a strange feeling - sometimes I look outside and the world is still moving while I'm in place........ With that said I am trying to continue to be positive and keep my life on a normal track.  I feel like if I continue with as much day to day as usual it will keep from getting in the dumps.

 I only needed to have my left breast and nodes removed, but chose to remove the right because my recurrance chances were pretty high.  My thought process was - I do not want to go through this again.  For me having my breast removed has not been upsetting - I kept waiting for the melt down, but it hasn't happened. At the suggestion of a nurse at the hospital I read a book titled "Why I wore lipstick to my masectomy", it was really funny.  The writer was 27 or 28 when she was diagnosed, she chose to only remove one breast. She is a survivor, a wife, a mother and huge supporter of breast cancer many years later.  You may want to read it - if anything for a few laughs. I to am not sure about the wig thing, but bought it just in case I change my mind as I start losing my hair. Strangely enough I think the one thing that is giving me the chills is the thought of my nails getting bad and/or falling off.  I will keep the flavored candy in mind for my first chemo session and I'm sure we'll find many more great ideas along the way.

Talk to you later and if we don't speak again before your surgery good luck and you will be in my prayers- Jenn

Karen09

I'm going to see about getting that book the next time I'm at the mall!  Thanks for the idea.  I think I need a laugh some days. 

Hopefully we can get some more August chemo starters on here soon!

gillyone

Well done jenn3 in getting this thread started. I am "visiting" from the July chemo group. You  and Karen will find lots more ladies to join you in your journey and will find lots of support from each other as time goes on.  You are both off to a great start! I often read the June chemo thread as they are a step ahead of us triple J's. and it's good to get an idea of what is ahead. There is so much useful information for you.

I also note that you are both triple negative girls as am I. There is support for us there too.

I am at the stage of having had surgery, lots of scans, and preparing for chemo in the next week or so. So just barely ahead of you. I'll be one of the last July girls to get started.

jenn3

gillyone - you are just on the border line and could easily fit into both places.  I have really learned so much information from the various threads including the July chemo group. I will have a lot to take with me tomorrow at my chemo class.  I am due to go in on the 29th for all of my lab work and various test needed before I start chemo and the clinical trial I'm in. I'm looking forward to making more friends and find support along the way. 

Karen- once my family is finished with the book I'll let you know.  If you haven't already bought and/or read it we can get in touch so that I can mail it to you.

everyminute

Hi ladies - just wanted to offer a word of encouragement. I started chemo in Aug of 2008!  I am 8 months from my last treatment and feeling good.  Chemo was doable and not as bad as I thought it would be.

Feel free to pm me with questions if I can help you along the way!

gillyone

Hi Jenn - I might be part of both groups if that's ok with you ladies. I am particularly interested to see what you and karen get with chemo to compare how the triple negative part factors in. Although not filled in on my profile I am IDC 3cm, stage lllc, grade 3, 9/15 nodes. I  have been reluctant to write it!  Now the scans are done of course there is the worry that it may change.

Karen - will think of you on Thursday,

gillyone

Hi Jenn, I might post with both groups if that's ok with you ladies.

karen - will think of you on surgery day.

jenn3

gillyone -  I say the more the better - I'd love to have you with us.

everyminute - I'm so glad to hear you're doing great - it gives me a lot to look forward to.

I am going to a chemo class offered by the breast center tomorrow afternoon and will be taking with me the list of information I got off of the "tips for getting through chemotherapy" thread/pin.  Some questions I planned on asking at the class are.....Should I talk to my doctor about taking Claritin and Aleve before the Neulasta shot?   I read various things about the discomfort from the Neulasta shot, which wasn't even mentioned to me by the dr. The other was would taking a probiotic help?  I read along the way from others that they felt that it helped them with the side effects. 

jenn3

I haven't been sleeping well - I seem to start having terrible dreams and getting restless at 2am. I have 3 or 4 bad nights then completely crash.  My mind starts racing with thoughts that I don't think about at all during the day - why?  I guess I'm surpressing everthing upsetting to get myself through each day.  My normal sleep aid on a bad night is benadryl, but it's not working.  I guess it's time to ask the dr for a sleep aid because let me say the infomercials at that time are terrible.

Karen09

Jenn - sorry you haven't been sleeping well!  Hopefully you can get something that will help.  I'm sure it's not fun being up in the night with your mind going full tilt.

Gillyone - I'm with Jenn - the more the merrier!  We'll all help each other through this! 

Everyminute - glad to see you are doing well!

 I was doing pretty good when I first found out I had cancer and I was always complaining that everything was taking so long.  Now that's closer and I've had more time to think about it all I am getting a bit anxious.  This morning was bad but now I have a lot to do to get ready for my surgery on Thursday (laundry, groceries, cooking, cleaning...all that fun stuff but going to get together with a friend tomorrow and go for some walks hopefully too).  That seems to helping a bit. 

Take care ladies!! 

gillyone

Jenn and Karen - the waiting is the pits. We are in shock the first few weeks and then tests etc and we just want to get going -  start fighting this nasty thing. I think nights are hard too Jenn. During the day we can keep busy so that we are not actively thinking about cancer every minute, it can stay in the background. But at nighttime it seems to take front and center stage.

We just have to deal with things as best we can.

dimc

Hi, I'm just reading through these threads (having my round 3 tomorrow) and wanted to offer a cause for your sleeplessness.  If you're taking steriods at all (I had them the day before, during and after treatment) these will keep you wide awake at night.  Make sure you time the medication right.  I have to take them twice a day so I usually do early morning and no later than 6 p.m.  Just a thought.  I hope this helps, you never know.  Good luck to all of you.  A great support group is one of the best healers.  Take care girls.

Diane

jenn3

dimc - no not taking anything yet except my allergy meds that I've been on for the last 15+ years.  For whatever reason my mind starts racing with the "to do" list and other things I truly don't wish to think about in the early morning hours.  It's like my mind goes into overdrive and won't shut down.  So frustrating..........

I went to "chemo class" yesterday.  The nurse didn't really say much more than I've already learned surfing the internet, but I did get to see the treatment area and meet some of the oncology team that will deliver the chemo.  I was also able to get information on hurricane evacuation, the support groups offered as well as the schedule of classes for the "Look Good Feel Better" program.  All in all not a bad class.

MaineCoonKitty

Hello August Chemo Sisters!

I will be starting 6, 3 week cycles of Taxotere and Gemzar on Aug. 12th - Taxotere on day 1, along with Gemzar on days 1, 8, and 15 of each cycle.  I had my port put in on my rt side one week ago, along with a lt side skin graft to cover the huge mastectomy wound, and a rt side breast reduction to give me a little more "evenness", since I won't be doing any lt side recon.

Leave it to me to get one of the rarest forms of breast cancer - malignant Phyllodes - which accounts for less than 1% of the diagnosed breast cases in the world!  Although there is very little actual research that's been done on malignant Phyllodes, in the past, it was standard protocol not to use chemo or radiation as follow-up, just surgery to remove it.  It was thought that it didn't react to chemo or radiation, but due to some new information coming out of a clinical study presented at this year's world-wide oncology conference in Denmark, my Breast Surgeon and Oncology team are using me in a "mini" version of a clinical trial to start a new protocol for follow-up treatment. 

You may ask "why?"  Well...because my case is so extreme.  My Phyllodes tumor grew quite rapidly and eroded through the skin on my left breast. When the breast containg the tumor was removed, it weighed 22 lbs.  Phyllodes does not usually spread through the lymph nodes, and I had no lymph node involvement, but sometimes it travels through blood vessels.  So far, I have no further evidence of disease (YAY!), but Phyllodes is a sneaky bastard!  So because of my high Onco score of 27, and because of the extreme nature of my tumor, the good doctors who have given me back my life have decided to use me as their guinea pig in hopes of starting a new protocol for malignant phyllodes.  They presented their recommendations to me, but ultimately, they left it up to me to decide. After chemo, I will also undergo a standard course of radiation as well.

So.....if my case can add something new to BC research, especially for rare cancers of this type, what's the loss of a little hair and a few months of discomfort?  I could have opted to do nothing further, since there is no real research that this chemo and rads will have any effect against either recurrence or mets from Phyllodes, but if there is even a 1% chance that it may work, then I HAVE to do something and not just sit back and wait.  Even if it does nothing and the cancer comes back, I will know that I did everything possible to fight it.  That alone is worth something.

BTW - don't be afraid of the port placement at all!  I was, after reading some of the horror stories out on the Internet, but it was a piece of cake.  There was no real pain, just some soreness in my chest and shoulder from the port for a couple of days.  That was easily controlled by Percocet for the 1st 24 hrs, then Advil for another day or so.  Today is one week from the port implantation and the only way I even know it's there is to feel for it or look in the mirror for the yellow spot from where the bruises are fading quickly.  And my soreness may have even been amplified a bit because I had a breast reduction on that side at the same time. 

AUGUST CHEMO CHICKS RAWK!

gillyone

I have heard that the look good feel better program is well worth going to - lots of free goodies!

Karen09

Welcome to the group MaineCoonKitty.  Sounds like you have a great attitude.  I have metaplastic invasive ductal cancer - I'm in the 1% too but a different 1% than you.  lol! 

My mom went to Look Good Feel Better when she had cancer and she got this big box full of free stuff.  It was neat! 

jenn3

Welcome MainCoonKitty - sounds like you and Karen both have rare forms of bc - Wow!!  I've never heard of Phyllodes tumors - I'll check on that out of curosity. Was it a painful tumor? How fast did it move?  Like you, the reason I joined the clinical trial was not only in hopes of helping myself, but the possibility of helping others on this road was appealing. 

Let's hear it for the August group!!!

Karen09

Well ladies I had my partial done yesterday.  It went well expect the dye didn't light up my lymph nodes so the surgeon had to take a bit more than she planned.  No biggie really.  I have a drain in for a next couple days and a little nausea and a bit of pain but not much so I'm doing pretty well!  An ExtraMural nurse is coming by to check on me sometime today but I'm doing well.  Now the hard part - taking it a bit easy for a couple days.  lol!

Hope you are all doing as well as can be.  You're all right - August group rocks!!!

jenn3

Karen - sorry to hear the dye didn't do the job during surgery.  How many nodes did they have to take?  Were they able to get results while you were still in surgery?  I didn't have too much trouble with my drains, they were just a huge aggravation.   I know what you mean about taking it easy.  When the doctor said I could start doing a little more on a limited basis my Mom had to explain to him what I had already been doing and that he needed to be specific because I have such a hard time sitting still.  We had different ideas of what doing a little meant..................

My official chemo start date is scheduled August 5th - 7:30am 

I've been out the last few days. A friend of ours loaned us their condo on the beach in Destin, FL. They thought it would be nice to let us get away before chemo started.  It felt sooooo good to step away from all of this for a while.  When we got to the condo the cleaning wasn't complete so we went down the street to Barnes n Noble and I bought a book titled "Crazy Sexy Cancer Tips", written by Kris Carr.  I loved it and read it in one day.  Although her cancer is not breast cancer I felt that I could relate emotionally to what she wrote and the other women in her book wrote. I found her to be funny and she put a great spin on various situations.  My 17 year old daughter also found it "fun" to read for a book about cancer.

This week I am meeting with a nutrionist to discuss diet.  I am lactose intolerant and use a lot of soy products. Based on what I've researched, I am sure what I am doing is fine, but thought I should discuss it with the oncologist dietician at the clinic(a service offered).  I am also going to spend a day over at the clinic doing various test required because of the clinical trial I've joined and the echocardiogram needed before I start chemo. I also read that dental health is important and I put off a filling when the bc diagnosis came up.  Now it's time to fill that cavity before I start chemo. I feel like I'm rushing to get so much done before chemo and like a vacation as much as you try to prepare - something will not get done or left behind.  Oh well....... I guess I'll cross that bridge when I get there.

Hope all is well with everyone - talk to you soon

gillyone

we have 2 stars - with rare cancers!!!

Karen - I hope you are feeling better after the surgery. And you must take it easy for a  few days - your body needs to recover.

Jenn - in your start post to the thread, you say you will have taxol second, but don't say what you first cocktail will be? I am having A/C DD x4 followed by Taxol DD x4. Perhaps oyu will have the same?

I had my first tx on Thursday. My port worked like a dream, all went smoothly and the nurses were awesome. So this is day three, I'm taking all my meds and so far so good - feel fine. And it feels so good to be doing something. My surgery was June 12 and it feels like a long wait to get started with chemo, but scans took a while. All were clear so I am ready to fight whaever is left in my body.

Good thoughts to all.

jenn3

Hey gillyone - I am doing the same thing as you DD AC followed by Taxol DD. Then on to radiation.  I'm glad to hear you're doing fine with your first dose and everything went well!!!  My start date is soon approaching and all I can think of is that I need to get everything done.  What everything is I don't know.  I guess the worst part is the waiting game.  Waiting for chemo, waiting to find how it will affect you, waiting to feel better, waiting for the next step and so on.................

YoYo44

Hello ladies,

If you don't mind I would like to join your August chemo start group.  I am actually starting this Wednesday, July 29 but feel like I would be so out of sync with the July ladies.

I cry when I read everyone else's stories but it also gives me hope and strength and positive energy to move on.  You have to be tough to have BC it seems.

I found my lump in March and finally got it checked end of June (thought it might be pre-menopausal) and found myself with a lovely diagnosis of another lucky winner, ILC of about 3-4 cm.  I always wanted to be special but not like this! I saw the surgeon and oncologist last week and he said how do you feel about starting chemo next week?!?!??  Well, what can you say-who feels good about starting chemo but you want to start killing the enemy within as soon as possible!

I am doing a neo-adjuvant treatment first and then surgery of unknown sort followed by... I am starting off with Zoladex and a relatively gentle (I hope) 12x taxol and then, not sure which, 4AC or 4FEC.  Nervous about the Taxol but a little freaked our by the AC.  But many women have done it before me so I will do it too. 

I start work tomorrow too after vacation so it is all so confusing.  At least I can start planning again.  Having a plan helps. 

Best wishes to you all. It's comforting knowing others are in the same boat so I am sure our August group will be as tough and victorious as everyone that went before us! Peace to you all.

gillyone

Welcome yoyo44 - a wonderful (and growing) group of ladies. As you can see from my posts I just got started with tx so officially am a July girl - but felt comfortable here too.

Jenn - in a weird way I am glad you are on the same tx - we can compare how we get on. Day 4 and all is well. I am also getting the neulasta shot after each tx, how about you?

buccaneersdj

jenn3, I also had what I thought was a cyst because of the pain and really had to dig into my boob to find a lump. I am 39 and was diagnosed with IDC on the day my last two kids graduated from high school, big time bummer! Just when my husband and I thought that we were going to get a little we time. Anyway, I just found out I am starting chemo (TAC x6) on July, 30th, so I am going to join the August crew. There's more than one TN in this group! Best wishes to everyone. Hugs...Donna

Karen09

Hey everyone, I'm just checking in.  I'm feeling quite good after my surgery.  I had the drain removed this morning and I wanted to dance around my apartment.  lol!  I didn't get any results after the surgery, Jenn.  Hopefully next week.  I can't remember how many lymph nodes the surgeon said she took - I asked and she said I still had lots.  I thought she said 22, don't know if that's how many are left.  I was in a bit of a fog at the time.  She didn't say why the dye didn't work but they did bump up my surgery time that day - maybe it wasn't enough time for the dye to hit the lymph nodes.  Not sure. 

Welcome to the group to the new ladies YoYo and Buccaneersdj!  We'll all get each other through this. 

 YoYo - I'm doing FEC and taxotere chemo too.  8 treatments, not sure how it works.  I'm supposed to start on Aug. 7th, one of my friend's bday.  Maybe that will be good luck. 

I have to have the Neulasta shot too Gilly.

Talk to you all later!

jenn3

Welcome buccaneersdj and yoyo44 to the Aug 09 group- sorry the circumstances had to be this way, but glad you can join us.

buccaneersdj - we do have quite a few TN's in this group.  I know what you mean about waiting for that time when you can actually get away, my husband and I are in countdown mode.   My youngest is in her senior year of high school this year.  However,  I'm really not happy that we are dealing with this during such a fun and stressful year for her.  Since your getaway has been delayed you can start planning something really special - it will be well deserved when you're finished with treatment!!!

yoyo44 - I know what you mean about the AC treatment - the more I read the more I wish I hadn't read.  I am really worried about the damage to my heart, but I guess chemo is hard on the body across the board. It's all scary to think about - cancer, chemo, radiation........... overload of the brain.

gillyone - Yes, I am doing the Neulasta shot and it looks like Karen will be getting it as well.  I'm with you - sorry we have to be here, but glad someone is going the same route as me.  We can share stories, the good and not so good.........................

karen - so glad you're feeling better - once those drains are out it feels sooooo much better.  I'm glad you didn't have to have too many lymph nodes removed - that's really good news!!!!

                                                                                               

buccaneersdj

Thank you everyone,

Karen09, if you are refering to lymph node mapping because I too had those painful shots 4 of them in the boob and laid under that machine for 4 hours and the dye never moved. The tech said she had heard of it happening but had never herself witnessed that. Anyway, off to surgery I went with no map so my surgeon also just grabbed what he could get, in my case 8 lymph nodes all neg. Hooray for no drains I too jumped up and down for that one!

I am having a PET scan Wednesday after my CT scan showed an enlarged lymph node in the chest/clavical area on the opposite site of my surgery, hope it's nothing, onc. said it won't change the treatment plan other than adding some radiation there if it is anything so I start chemo on Thursday. I still don't have my port but the chemo girls move faster than the surgeon and I am ready to get the show on the road so I guess it will be IV at least for the first one. I also get Neulasta the next day.

I am sad we are all here, but glad we have each other to get thru this, I have my family but I know how valuable having someone that "really understands" what I am going thru is.

Hugs..Donna