October 2013 Chemotherapy

ML40

Hello Ladies, I haven't been online for awhile. My husband was admitted into the hospital for pneumonia and he was discharged today. It has been crazy, I tried to postpone my port placement & chemo for another week, but my MOC & Nurse came up to my husband's hospital room to talk to me, apparently I only have a 8 week window from my surgery and I have stretched it too far, they reminded me again of how aggressive the cancer can be. I just wanted to take care of my husband, but was reminded that his pneumonia will clear up but my cancer is a different story. Talk about a reality check.

Called my mother-in-law and asked her to come take care of my husband- for those of you who are following all the post, I was absolutely against my mother-in-law coming to Hawaii when I started chemo, but had to put that aside and broke down and called her to help my husband who is very weak. I now have both my mom & mother-in-law in my house. I get my port installed tomorrow and start chemo on Monday. I'm so scared but putting on a smiling face for everyone :)

travlmom

ML - you have us all in your pockets! Prayers for you and your husband.

I just got off the phone with the nurse at the local facility that I wanted to go to for herceptin and neulasta.  I will be able to split my tratments between the main campus downtown and locally.  This will help a lot during our crummy winters to not have to drive so far for the shorter appointments.  I am still waiting on the referral for Radiation to go through at the same place. Something has to be convenient right! 

I have been so positive and strong up until this week.  At night I am a basketcase at home. I just want to hide in my room. Puttin gup a good front at work and with friends.  This sucks! 

lgkgde13

Travlmom- I am right there with you. Now that I have a start date I am scared and don't want to leave bed and just crying....my DH called me to tell me I need to get out of the use and do something for myself like pedicure....being friendly to people at salon is last thing I want to do right now.

ML40- so sorry to hear about your husband. It is all so mentally exhausting and can't imagine having your DH sick on top of it.

Lisa, how frustrating for you. I hope they figured it out soon I know all the waiting and tests have driven me a bit crazy.

Jaybird26- I thought positive lymph nodes meant chemo as well but i am not experienced as others on these boards. I am sure you can post question on new string and would lots of responses. I didn't have oncotype dx but mammaprint which I was high risk therefore chemo for me but I did not have node involvement.

SpecialK

jaybird - check these links.  Others posting with positive nodes and low Oncotype Dx.

http://community.breastcancer.org/forum/69/topic/810447?page=1#post_3710403

http://community.breastcancer.org/forum/69/topic/811151?page=1#post_3706329

http://community.breastcancer.org/forum/78/topic/747694?page=2#post_3688860

Pam358

Jaybird - I was under the same impression that lymph node involvement meant chemo.  My BS and MO kept talking about my node involvement being the game changer and it would bump me up to chemo.  However, the other thing my MO went over was the guesstimate of % of recurrance/cure based on my treatment options and my particular diagnosis. It helped me to know how much or how little a treatment would possibly effect the outcome. So maybe if your MO could give you some idea of how much the chemo would help it might make it easier to make a decision.  Yes, the hormonal therapy will definitely help all on it's own. If you are really stuck maybe a second opinion from another Oncologist would help you make the decision.

Lisa - What an ordeal!! Not even a really really good scone could fix that day! It does sound like your medical team is working really hard at trying to figure it all out - collectively that is a lot of brain power working in your favor.

ML40 - And here I was hoping since I didn't see any posts from you that you were out having more fun before your chemo started. I'm so sorry to hear about your husband's pneumonia but glad to hear he was well enough to be sent home. Darn it, she won! She got to come and visit even though that was not your choice.  But, at least she has a different patient to focus on. That must have been quite a reality check when the MO and Nurse sought you out in your husband's room to discuss your treatment.  I hope your port placement went well today and I wish you nothing but the best for Monday - glad your Mom is there. We'll be thinking about you!

Kellee - I'm happy to hear your new MO is so much better,  being confident about your team makes a big difference.  Sorry, can't help you with any HER2+ advice.

Travlmom - I understand the winter treatment travelling woes. I was just given another option for where I would receive my Rads (Feb/Mar). Basically it's the same distance but one north of me and the other south.  I think the winter weather is more unpredictable north, but I'm not sure - I'll have to do some further investigating.

Most of us seem to be using lots of energy to put on our "happy" face when we leave the house and interact with others - it sure is exhausting isn't it? I think for me this whole breast cancer thing is like an APP that is constantly running on my phone.  It's always updating, gathering information, processing information - some days it wears on my battery slowly and other days it takes the charge out of me faster than I can get it plugged back in for a recharge! My diagnosis was like a filter added to my lens on life - the cancer seems to be always right there, not always top on the list of things to think about, but certainly close. I'm so glad I have these message boards because sometimes I can't imagine that anyone in my life, even though I have tons of support, wants to talk about cancer as often as it's in my head except other people for whom cancer had taken up a lot of thinking time.

I hope everyone has the best day possible!!

SpecialK

kellee - it is important to remember that when you enroll in a trial you only have a 50/50 shot at getting the trial drug.  So you may enroll and still not get the Herceptin. Your sig line lists you as triple positive - but a 2+ reading is borderline and technically Her2-, can your MO contact your insurance to see if they would cover Herceptin for you to receive in your own center? The upside of the trial is that you are helping advance the science.  Do you have the trial info?  If not, here it is:

http://www.cancer.gov/clinicaltrials/search/view?cdrid=692574&version=Patient

There is another trial that may be a possibility for you.  I am enrolled in it and travel to Washington, D.C. for it.  It is in limited locations so you would have to travel as well.  It is a Her2+ vaccine trial in which they have found that some benefit to lower expressing Her2+ (1+ and 2+, but not 0) patients.  It is a histologically based trial - the tissue typing like they do for transplants sorts you into either the GP2 arm or AE37 arm.  If you are A2- (your tissue type - half of people are) you can go to the AE37 arm and possibly benefit from the vaccine.  Baltimore is probably the closest location for you.  Here is the info:

http://clinicaltrials.gov/show/NCT00524277

karlee77ny

Hi all.  I will be joining you ladies.  So far I've done a lot of reading on all these various boards.  But now I will be starting Chemo on 10/3/13 and wanted to finally post. It will be 6 doses every 3 wks.  Drugs posted below should include Hereceptin, since I'm HER 2 positive which will continue on for a full 52 wks, every 3 wks.  For me this Chemo is the worse part of this whole journey.  The last thing I want to do is Chemo.  If I felt there was any way around it, I would avoid it.  So this is the scariest part of this whole process for me so far.  I really wish the best for everyone.   Thanks for the support.

travlmom

Has anyone had their port put in?  My BS just called and seemed irritated that she just received the note from Wednesday requesting a port.  I am headed down there on Monday for a genetics counseling appointment.  How long does the procedure take?  My husband cannot take the day off for this at this point.  Can I drive home? 

Time for a party weekend with my girl friends.  I hope everyone has a good weekend.

Pam358

Karlee -welcome to the October thread but sorry you have to join us. This is the right place to be for support!

Travlmom - I have a port but mine was put in during my surgery so I'm not sure about driving or how long it took.

Kellee318

SpecialK...thanks for the info on Her2. I am still debating the whole thing.



Travlmom...I got the call this morning to go for my port (on the 9th) and they didn't tell me I would need a ride home so I'm thinking you can drive yourself but that's just a guess. You should be able to call even over the weekend to get an answer though. Thinking of you! I hope you enjoy your party weekend!!!



Pam...I LOVE how you described the cancer being an app running in the background! Describes how I feel perfectly!



ML...I hope your dh is better quickly! mine is having surgery on Tuesday. We've had a really tough year but it started off GREAT when we got married at 12:02 am on January 1!



Karlee...welcome! I'm new too. This is a wonderfully supportive place where no one wants to be.

Jaybird26

Hello Ladies,

Met with my MO today to go over oncotype score of 8. There is no scientific data indicating if chemo is effective or not for early stage breast cancer with node involvement. They are currently doing a trial (ponder) to help find these answers. Standard of treatment is to receive chemotherapy. MO offered me the option of CMF in place of ACT. Anyone know about this chemo regimen? She states SE are less and she is confident it will be beneficial with my breast cancer. Too much to know about. Thank you for your help



Travlmom: I had my port placed this past Tuesday. I was there for about 4.5 hrs and I had to have someone drive my home. I was given conscious sedation not general. Hope this helps

ML40

Jaybird- my doctors always told me I had a choice, they did give their opionins and gave me the % for reaccurance but ultimatly it is up to you. My MO & Nurse knew I wanted the best option so I believe that is why they came to my husband's hosiptal room (their office was downstairs) I am healed from my lumpectomy and right node discetion. I feel great, so I am asking myself why put my body through chemo. Another person on the Sept board shared with me a little phase her husband says to her. "We are on a search and destroy mission, going to find and kill thos little #######" I had lymph node involvement, so that is why I decided to have chemo to kill any possible little #######. I am getting TCH.

I had my port installed today and couldn't drive myself home. Walked 2 miles this morning before I went to the hospital. I was really emotional crying and singing with my inspirational music. It was great to walk and get my emotions out. Having the port installed wasn't too bad, a lot of sticks then eventually pressure. Drs gave me a nice cocktail to relax, felt like I had a couple of margaritas A little sore from the small insision but just took tylenol and I feel fine. I slept most of the day but believe I was exshasted from this crazy week in the hospital for my husband and has nothing to do with my port installment. 3 days until I go into kill any destroy. Hope everyone has a great weekend.

LiLi1964

I want to apologize for the length of this post – seems I can’t ever make them short… 

ML40 – I’m just getting up to date in this thread; I’ve taken a little time away due to all the new developments in my delay of starting chemo. 

I hope your husband is doing well.  Please thank him (and thank you as a military wife!) for his service to our country!  I hope he has a full recovery.  You are obviously a strong woman being able to handle a transfer to a new state, diagnosis and treatment for cancer, having to face issues w/mother-in-law, and then having MO & nurse approach you telling you to “hurry up” and get into chemo.  Wow – that’s a lot on ones plate and you seem to be handling it all in good stride.  Fyi – sorry to hear you’ll need to have the mother-in-law in your home but hopefully she’ll be kept busy w/her son and won’t cause you too much distress – and she may be a blessing in disguise….keep positive and you may be surprised (I don’t know the whole story – and there seems to be a story there).  Are you living on-base or off-base?  Is there a possibility they can put your mother-in-law in temporary housing for her stay?  I’ve never encountered this whole cancer issue while active duty but I would think the base might make accommodations for MIL – it may make it easier for you if she at least is not spending the nights in your home.  Just a thought (if your husband would go for it). 

I’m glad you’re keeping in mind my husband’s “search and destroy” comment.  It was so “military” I had to chuckle when he said it but it stuck and I keep thinking of it as my chemo is right around the corner.  You may have surmised by his comment – he, too, is military for nearly 30 years and heading into retirement this next year; so we have something in common there. 

May Monday go well, may it be anti-climatic, may the SE’s be minimal if they even appear at all (positive thinking!).  I’ll be thinking of you and keeping you (and your husband) in my prayers. 

Travlmom – Your nerves sound kind of similar to what DebDylan and I were feeling prior to our start date of 9/26 (mine was delayed at last minute).  We have all the nervous feelings, but strangely enough a couple days before chemo we both had a sense of calm – very weird but I think perhaps you know what you must do and have prepared as much as possible, that a calm kind of sets over you.  I am hoping the same goes for you in the days leading to your actual start. 

It’s good they’re working with you to get your treatments/injections in locations that are more convenient for you.  I made the same request to my MO and she said they never did that – so I hopped on the phone when I got home and contacted my Care Manager at our insurance carrier and put it in her hands.  She got the referrals in place (after some issues w/MO office) and was able to get my Neulasta injections sent to my PCP so that I didn’t have to take 2 hours out of my day following chemo for the shot (that’s round trip to cancer center); instead running to my PCP only takes 40 minutes.  Sometimes we just have to speak up and not let the docs dictate how things will be done….there is always a way to get things set up for more convenience but they should make it easier (like we’re all not dealing with enough already we have to beg to get a little convenience to make our lives a little easier!) 

Isn’t it frustrating that some docs (ie your BS) get annoyed about short notice on port?  What’s with that anyway?  It’s not like we had a choice; when MO makes that call we follow what we’re told and your BS should not take their annoyance out at you – grrr!!! 

Lgkgde – Please read what I wrote above to travlmom; I hope the calm a couple of us felt (surprisingly) the days right before the start of chemo also happens w/you.  I hear you about “getting out and doing something nice for yourself” – easier said than done and I don’t believe anyone can understand our feelings unless they are going thru the same thing (which is why this forum is such a great place for us all to gather and discuss how we feel and encourage and educate one another!).  

Karlee77nv – chemo is scary and I would have thought it the scariest when starting this journey.   But after surgery and a very long recovery (and drains for 6 long weeks)….chemo seems like a simple process.  However, given my PET Scan and EKG issues I now change my thinking!  I seem to now be in a place of “protect the heart” or “kill the cancer”…I’ll likely have percentages put in front of me on Wed w/Cardiologist and don’t know how I’m going to make my decision (nothing ever turns out to be easy in all this!).  I hope for you, too, that calm comes over you in the days leading up to your start.  

Kellee318 – you do sound like you have a busy week!  It’s nice when things finally get moving after we all do so much waiting.  I hope your DH surgery goes well and will not cause you undue stress. 

Jaybird26 – It’s a tough decision and I feel for all you ladies that need to make it.  I think most of us are of the belief that we want everything possible that is most effective to kill any lurking cancer cells that may be floating around in our bodies.  Did your MO give you percentages of how one treatment vs the other will affect the outcome of treatment?  I know when my MO showed me my percentages it made my decision very easy; no further treatment means a 27% chance of recurrence in 10 years but add chemo and the rate comes down to 12% - so easy decision for me.  If your MO hasn’t done that for you, perhaps it would make your decision easier if you ask him/her to do that for you.

SpecialK – I see you popping up in a lot of threads and was glad to see you pop in here.  You sound incredibly knowledgeable (I’ve tried but when it comes to chemo I can’t seem to wrap my head around it all) so I’d like to ask you this:  This coming Wed I will be 8 weeks post op.  I am Triple Negative.  My chemo was to be AC-T and should have started 9/26 but was delayed due to results of PET Scan and EKG.  PET Scan is lighting up in the right nodes (I had tested positive in right sentinal node but it was considered incidental – to the point where they said the number of cancerous cells made the classification ‘negative’) but now everyone is not so sure given their concern over PET Scan results.  Had US but they can’t tell if it is inflammation remaining from surgery or cancer – so that was no help.  EKG is showing heart output is at 50% which is the lowest “normal” and now there is concern w/using Adriamycin (and I know all the dangers w/Adriamycin but given the aggressive nature of my cancer was fully willing to use it.  Even opted to try just IV as I had no port – I know the dangers but it seemed the best drug for best results).  So everything was put on hold until I see Cardiologist on Wed.  That’s the background, now here is my question – since I’m TN and have a more aggressive cancer, and we are now at basically 8 weeks post op, how much time do I have to make decision of “do everything to save my heart” or “kill any and all lurking cancer with the most effective chemo available”.  I’ve read 8 weeks is as long as they want to go and I’m there on the date I meet w/ Cardiologist.  It took so long getting an MO appt I feel everything is being put on STAT and leaves me w/so little time to research and find out what is best for me.  I’d like your opinion, if you have information on this.  And can I ask, are you a medical professional?  Not that it matters to me, but your knowledge astounds me and I must say, I stand in awe of your comprehension of all this! 

You all sound like a wonderful group of ladies and I'm glad to be in w/such a supportive and caring group on this next step of our journey! 

I am keeping each and every one of you in my thoughts and prayers.  I pray for calm to come over everyone facing their start of chemo this week and that any SE’s are kept to a minimum! 

TeamKim

LiLi, thanks for the reassurance about getting to a calm place -- can't wait to get there. I have two weeks before I start chemo, and feel like I am obsessing. I keep buying all these things, "just in case," and random "oh no, didn't think of that" thoughts pop up. I waver between fear, crying, worrying, calm, and fear again. I can tell that I am groping for control over a process that I know is beyond my control. Doesn't help that I MUST work through treatments -- I support my family and don't have the kind of job where someone else can take my place for more than a day here or there). This is the most nerve wracking time of all since my Dx.

Pam358

Jaybird - I have not heard of CMF but I'm liking the MO comments that the SE are less and she is confident it will be beneficial. I know for me I need to do as much research as I can and then I have to also add the element of trust in my medical team since I chose them for their skills and expertise. So many of our decisions are difficult.

ML40 - I'm glad you had the chance to walk/sing and get emotions out. Also good to hear that you were able to get caught up on your sleep which I'm sure was much needed.  Maybe those Moms can get some meals in the freezer for when they depart and nobody feels like cooking? I hope you are still able to start the B&B tradition on Monday!

Lisa - my MO told me 4 -12 weeks post op was the most effective time to start my chemo.

TeamKim - sorry to hear you have the added burden of MUST work during your treatments. I'm hoping you have minimal if any side effects.

Hoping everyone has the best day possible!

LiLi1964

Pam - I had read that as well but given that I'm TN, I believe their timeframe is more in the 8 week period.  Took so long to get into MO and now everything is being done STAT - so I'm concerned my timeframe is the 8 weeks.  So little time to make important decisions......and it's taking it's toll on me emotionally (I feel the same as I did between DX and BMX when I completely fell apart).  It's almost like I'm going to need to make a decision of "die from a heart attack" or "die from cancer" - if either is comprimised to a dangerous point w/further treatment.  I had thought all my decisions were easy to make and my further treatment was pretty standard until all these other issues were tossed in my lap.  And who wants to make a decision like that, anyway?  My positivity has completely gone out the window; and now am back in a bad frame of mind emotionally - I'm sick of all this!!! 

Sorry for sounding so "down" - but it's how I'm feelling the last couple days.  I can be positive for others and offer encouragement but when it comes to my own situation....well, being positive is far from how I feel.

SpecialK

LiLi - Lol, I have too much time on my hands - that is why you see me!  For some reason I clicked on this thread and responded to a few posts, and remembered what it felt like to be right at the spot that you all are so I have stayed with you a bit.  I hope nobody minds.  I do have some accumulated knowledge but I also have a lot more time from diagnosis, you all will gather information as you go along.  I am someone who feels more comfortable the better I understand the subject matter so I have also done a great deal of research.  I have a number of friends who had been diagnosed prior to me, and several after me, and I have helped them as they have progressed through their treatment.  We have a very active local group from BCO also - we get together at least every other month - and as you can probably guess, we talk a lot about our individual situations, a number of us have doctors in common.  My in-laws are doctor and nurse, brother-in-law is a doctor and is married to a nurse, and another sister-in-law is a nurse, and I worked in Transfusion Services in the same hospital I had my BMX in up until I was diagnosed myself.  My father and brother were each diagnosed with stage IV cancer of different kinds, so I have had some baptism by fire in learning about cancer.  On your question about the optimal window for starting chemo - I understand your concern.  Generally, it is best to start within 8 weeks, but you can go to 12 weeks.  Here is some info using a 120 day time frame:

http://breakthroughs.cityofhope.org/chemotherapy-breast-cancer-surgery/3221/

And some more with a 90 days max window:

http://jco.ascopubs.org/content/28/27/4135.long

I am an example of someone, with an aggressive tumor make-up as well, who had to wait even longer than that.  I had surgery on 11/1 and did not start chemo until the following Feb. - a delay of 14 weeks. I had skin healing issues and ended up having five surgeries prior to chemo - could not stay out of the OR.  The first unexpected surgery was because of the exact situation you are currently looking at in regard to your nodes.  All imaging (mammo, US, MRI) showed no issue with nodes (I don't image well - mammogram missed my palpable 2cm mass in the breast) and my SNB was negative in the OR during my BMX.  Post-op pathology showed 20 IST (isolated tumor cells) in the SNB. Because of the Her2+ aspect of my pathology both my MO and BS felt very strongly that I needed axillary lymph node dissection.  My BS was one of the pioneers of SNB at Moffitt Cancer Center, and is not a reactionary surgeon, so I know that this was carefully considered.  I had the ALND five weeks after BMX and pathology showed a 6mm positive node further up the node chain.  This is very unusual, but should be cautionary for someone in your situation where nodal status seems murky.  For me being ER+, chemo does not always provide PCR, so relying on chemo and rads to clean up that node would have been too big a gamble for me.  It is unfortunate that imaging is unable to detect the node situation - has there been any discussion of using chemo adjuvently for the breast but neoadjuvently for the node and then dissecting afterward?  They would still be able to tell if the nodes were affected after chemo as long as they are removed.  The other good thing is that chemo is thought to work very effectively on TN tumors.  As far as your EF (ejection fraction - pumping strength) rate - I am assuming you meant echocardiogram as opposed to EKG, it may not move at all during chemo.  Your cardiologist will be able to give you more information on that, but Adriamycin heart damage can be permanent so you do need to carefully consider your individual risk with both your cardio and onc.  The good news is that beyond the echo or MUGA scan for cardiac function it is easy to start chemo on very short notice, so once those issues are squared away you should be good to go immediately.  The thing with TN BC is definitely using the three pronged attack combo of surgery, chemo and rads.

LiLi1964

SpecialK - I doubt anyone here minds your involvement. In fact, I'm sure it is appreciated by more than just myself.  It does not surprise me the medical background in your family - it makes sense you have such a good understanding of all this (I, too, am usually very proactive and research everything before hand but this chemo stuff - it's too much for me!).

They called it an EKG but used ultrasound so I believe you are correct.  And yes, they are of the thinking to use chemo and see if these nodes shrink and then remove after chemo.  I've no clue if partial or full - nobody said anything to me.  Rads they say are not going to be used; that the chemo is my best option and what they all want to go with. 

See, everyone was telling us that the nodes were of no concern prior to BMX. In fact, I heard from BS "the chances of any node involvement are next to none" - well, so much for that.  He was of the same notion w/IDC - found to be much more extensive than his original "it's very little and well isolated" (having had lumpectomy 20 years ago I'm very well versed on how a simple mm can make the differnce of "you have cancer" vs "everything looks fine" - not so w/core needle biopsy and I knew that so took no comfort in BS saying IDC was so isolated).  So having been proven wrong twice....you can see why I am very concerned there is much more going on in the right nodes?  They lit up like a Christmas Tree on the PET Scan - hence the reason for medical teams concern.  I'm guessing no ALND now is they have no way of knowing if this is just inflammation so they don't want to jump into that area w/o that knowledge - and I'm fine with that.

My biggest concern is the heart.  I've been told my heart may always have been at 50% and we only know now due to testing prior to chemo.  But still, Adriamycin will likely weaken it and put me at great risk of a future heart attack.  Yet I know so little of what meds they can use to protect the heart for that to be used (and I don't know if there really is and don't want to be a guinea pig to find out).  Same time I don't know how effective Taxotere is for TNBC....so again I wonder "future heart attack" or "future recurrence of cancer".  Will the Cardiologist give me percentages on each like MO did on no chemo vs chemo?  I mean, that's a tough call and one I don't know how to make w/so little time...and I want this chemo started asap before any possible cancer that may be in my nodes has a chance to move on and fester elsewhere - know what I mean? And if this Cardiologist is into studying chemo and the heart, might he be more apt to tell me he can put me on meds to protect the heart so Adriamycin can still be used (i know that sounds cynical but it's a thought running thru my head and so I ask it) to further his study?

This really all just upsets me so much!  They took they sweet time getting me into MO and now I feel pressured to make decisions w/o the time (I'm now back to work full-time) to figure things out!  I'm just very confused and emotionally getting to be a wreck over this.....I don't know what to do and don't know if it will be any easier after Cardiologist appt.  May even be harder and the clock is ticking!

LiLi1964

Sorry to repeat post so soon, but I often create my posts in Word and then copy/paste into forum.  I missed the last part of my orginal post and wanted to make sure TeamKim got my full thoughts on her recent post…….just found this lingering in my Word docs…..

TeamKim – I, too, have to work during chemo.  Don’s know how I will manage and our finances took a huge hit w/my lengthy recovery (not to mention the mandatory furlough my husband has being active duty/national guard it right smack dab in the start of all this furthering our lack of incoming funds!).  And the same holds true for my need to be working as there are many things only I can take care of – I can do most from home if need be but its so inconvenient that way!  I wish I could give you advise there, but since I’m in a similar situation…..I guess we’ll both work thru it together and hope for the best (what choice do we have?)

SpecialK

LiLi - you do seem to be in between a rock and a hard place in regard to going forward with Adriamycin and risking heart damage down the line.  Has your MO given you any indication about any willingness to use Taxotere?  The cardiologist can't use you as a study subject without your approval, so any info derived from having you as a patient, without enrolling you in a clinical trial or study, would be strictly anecdotal.  If he is a cardiologist who is conversant with chemotherapeutic agents then you are actually fortunate - many cardio docs are not - particularly with Herceptin damage.  I know with Herceptin echos or MUGAs are done quarterly during the year we receive Herceptin to check what is happening to our EF.  They are looking for a 10% drop, or a drop below 50%.  If you are normally someone who has a lower EF this could be a problem - or, nothing may happen at all.  I would ask the cardio about how they will monitor your EF if you decide to go ahead with Adriamycin - are they proposing 4 DD AC, then Taxol?  Is your cancer in the same breast as previous lumpectomy, and did you have rads with that previous surgery - is this why no rads now? 

TeamKim

LiLi -- thanks for letting me know I have a sister in the working-with-chemo trenches.



As for whether chemo was a choice..... I don't have your node involvement issues, but heart disease runs in my family so I was grateful that my chemo regimen would be TC. My MO said that research is underway to find out whether chemo even helps people with my profile (stage 1b, grade 3 due to the wonky differentiation of my IDC cells, clear nodes, ER+, PR+, HER2-). He said that he thinks the research will ultimately show that hormone therapy and radiation will be enough, but since we can't time travel ahead 5 years, he is unwilling to suggest I skip chemo. Adriamycin is dangerous for the heart, he said, but luckily my pathology does not suggest using that drug. I could have decided to forego the chemo, but at my age (58), I am hoping to live a nice long time and see my son graduated from college, married and meet my grandkids.... So I decided to throw whatever I could at this crummy BC.

LiLi1964

SpecialK – thanks for the confidence in Cardiologist and chemo; that makes me feel much better. 

Yes, MO did mention using alternative Taxotere for 6 weeks; I believe w/Cytoxin (can/do they do that?) being used every 2 weeks (Cytoxin was oringinally scheduled for 8 weeks so I’ve no clue if that changes if we move to Taxotere).  Second round=Taxol for 8 weeks (given every 2 weeks).  Neulasta injections 24 hours after each chemo.  But how effective is the Taxotere compared to Adriamycin in TNBC?  So you’re saying I should ask if f/u echos or MUGAs will be done during therapy – is that correct?  Makes sense to me now that you brought it up!  More trips to doc offices…..does it never end? 

Forgive me, but some abbrev I just don’t understand.  What is 4 DD AC, then Taxol?  

My cancer was DCIS and IDC in both breasts at the same time and was told this is not common.  No radiation after lumpectomy 20 years ago – tumor was found to be benign.  They are all just telling me no rads now; chemo is my best option.  I can’t tell you why; I’ve no clue (other than in the breast area they said since all the breast tissues were removed, other than the 5% that is normally left behind, radiation would be useless since all breast tissue was removed there is nothing left to radiate.  And I did have clean margins).  It seems that I have more issues in my right breast and nodes now (or had more issues) but 95% of all previous issues – and there were many – were all on the left side.  All took me by surprise; no breast cancer or related cancers in my family so when I got DX I was in complete shock. 

So my main question is how effective is Taxotere for TNBC?  Vs the effectiveness of Adriamycin?  Again, back to heart vs cancer…..

karlee77ny

I had my port put in last Tuesday.  The procedure took about 35 minutes and I was under drugs that didn't knock me all the way out, it was sort of twilight.  You need to have someone there to drive you home.  The whole process for me took just over 2 hours.

As I said, I go for my first chemo treatment next Thursday and I am not looking forward to it.  I'm lucky that I don't have to go back to work until November so I will have a couple of treatments under my belt.  Hopefully the side effects won't be too bad.  I already have my wig and will go to get my hair cut off right away when it begins to fall out.  I've already had it cut short.  I think that this will be the only way I will survive this part of the process.  Thank God for my husband.  He has been my rock through this whole thing.  He will drive me to my treatments.

I wish I could say I wasn't scared but I really am.  I hate being out of contol of all of this.  Biopsies, Tests, MRIs, EKG, Ultrasounds, Dr visits after Dr visits, surgery,  more treatments, recovery and now Chemo.  Then there is the hormone treatment down the road and who the hell knows what else thrown in along the way.  All I can hope for is that it goes better than I expect. 

Thanks for listening ladies.

Annecy

Hello ladies- Can I join you on this incredible & stressful journey?  I met my MO for the first time on  September 24, 2013. I am scheduled for the MUGA test & a Bone SCan next week.  Meeting the MO on October 8th  to get the results of the tests.  I was informed that I will start chemo on October 16th or possibly earlier.  I'm trying to prepare myself for it ...just reading about the side effects of these drugs is freaking me out.....so darn scary!!! Thank you in advance for the support that you can bring me on this journey. 

SpecialK

LiLi - I looked for some info for substituting Taxotere for Adriamycin and really could not find much - I think your onc may be the best source of info on that.  You are certainly not the first TN patient who has some pre-existing cardiac issues and is looking for a potential change is the standard drugs used for TNBC.  The vast majority of TNBC patients receive AC-T, so I am thinking there is less data regarding substituting Taxotere.  I also wonder if they put you on protective cardiac drugs during chemo they may still be able to use the Adriamycin - this is something the cardio can address.  DD AC then taxol is the way this combo is usually given.  DD is dose dense - and they give four (usually) Adriamycin and Cytoxan infusions together, then they stop that and go to weekly (usually) Taxol.  These numbers can be different for different patients.  They sometimes give all three drugs together -  abbreviated TAC.  It is tough combo because you are getting the anthracycline and the taxane simultaneously - could be tough to tolerate, they tend to have distinctive SE - more nausea with A, more neuropathy with T.  With Taxotere, it can be combined with Cytoxan or Carboplatin.  I did see some studies that showed use of Carboplatin for TNBC.  I had Taxotere, Carboplatin and Herceptin simultaneously for 6 infusions, then Herceptin only for the balance of the remaining year.  I think it is unlikely that they would give you both Taxotere and Taxol - too much possibility for neuropathy, which can also be a nasty and permanent SE.  They would be more like to give you one or the other, possibly longer Taxotere and either Cytoxan/Carboplatin (8 instead of 6) every 21 days.  If you do the Adriamycin I would definitely ask how they will be monitoring you throughout - I would be asking for periodic echos - they are less invasive than MUGA and provide good info on ejection fraction.  On the rads subject - it might be worth asking for a rads consult, especially in light of possibly using Taxotere instead of Adriamycin - might be some extra insurance.  Also, I am linking a thread about TNBC - a fair number of the people posting used Taxol or Taxotere.  You might be able to PM some of them to get some info.

http://community.breastcancer.org/topic_post?forum_id=72&id=775662&page=7

LiLi1964

SpecialK - I can't thank you enough for all your help here today!  Sincerley, you've really given me a lot of info that I was not aware of, had no clue about, and frankly I still stand in awe of your knowledge!

I've read many of your postings over the last month and you are a great source of information.  I'd personally like to say you really are an asset to this forum; if you don't know an answer, you either find it or am able to direct us to good, solid, medical sites that can help up find what we are looking for.

I've also noted, upon first stumgling across one of your posts that you have had a rather long and (at least to me) daunting history w/your cancer and reconstruction; not to mention all the therapy that followed.  My hat goes off to you!

Once again, my sincere thanks!

Lisa

SpecialK

LiLi - thanks!  I am doing well now but there was a period where every day felt like the movie Groundhog Day and I kept going to the operating room, lol!  I had surprise positive nodes, and surprise ADH and ALH in the "prophy" breast, surprise healing issues that caused the loss of my left expander, eventual success with recon, but now bi-lat lymphedema that is decently controlled - the thing I learned is to stay on your toes because chances are everything will not go smoothly - for almost everyone there will be an unforseen challenge of some kind.  Better to be the reed that bends in the wind than the oak tree who snaps!  I feel there has to be some good that comes out of my personal challenges and part of that is sharing with those who are newly diagnosed.  If I don't know the answer to a question I do go and look - I think often for newly diagnosed they either may not know where to look or are so overwhelmed it is too hard - I totally understand that mindset - so I try to direct people who have questions.  I also feel like it is my responsibility to back up what I say with something concrete - like a study or trial, or a reference point - so it is not just my opinion, but something factual that can be relied on as a jumping off point for conversation with each individual's doc.  I am very happy that you found the info helpful!

Pam358

Welcome Nicole - we would love to have you join us so we can support each other through this journey.

wrenn

Welcome Nicole. This place will definitely make it easier for you. I am starting on the 10th if mo clears me and I would be so much more anxious if not for the women here.

TeamKim

Welcome Nicole -- Nobody wants to be in this club, but there is strength in the support of others.



Wren, I start one day after you -- we can do this!!