Length of presurgery chemo ACT, discussion please

dogeyed

I have issue with the number of weeks I've got to do my chemo, want to cut back.

I've got Invasive Ductal Carcinoma, high grade, agressive, with inflammatory aspects, tumor is more than 5cm, I'm 60 years old, I'm disabled by back injury, and I'm receiving chemo before surgery. I have no interest in breast reconstruction.  I'm being given ACT chemo, split up, I have no idea of dose, maybe it's the same for everyone? I've begun Adriamycin with Cytoxan every two weeks times four, to be followed by Taxol every week times twelve. I'm wondering if anyone else is on less cycles for Taxol than my twelve? I don't know if I can do that many.

I'm in the middle of the AC chemo, and it just blew me away, the fevers, pain, nightmares, not to mention how badly I want surgery, but I can see the end of it, you know. But then the idea of following with twelve more weeks of the Taxol is just hard to handle, and put on top of that my portion of cost of each chemo, I'm wishing maybe half the treatments of Taxol would work just as good.  

I wish I knew the studies, how they arrived at twelve being a good number. And also, I have read in various forums here, that some people get ACT together for just four or six weeks, or it's broken apart like mine and the T part is only four times, some six, others like my twelve, maybe because of lower dose, age of patient, tumor size, how come I get twelve times? Has anyone had to quit during their twelve times of T because of side effects, low blood counts?

Just anybody's thoughts on length of treatment for Taxol would help me decide if I should bring this up to the breast surgeon, because far be it from me to put him on the spot and try to make him change his protocol (which isn't likely that I can). But on the other hand, if my survival would be just as good with six weeks of Taxol versus twelve, maybe by increasing dose, or just less being okay, well, I wanna hear about it. Or maybe they can throw in some T now while I'm doing the AC?

Thanks a lot, tomorrow is my second AC, any responses would be great.  GG

mks16

Hello dogeyed,

I don't have any answers for you, but I have been told that Taxol should be way easier to handle than AC, maybe you can find some comfort in that.

I am also on dose dense ACx4, followed by Taxol, in my case x4. For me, that's a total of 8 treatments, and done in 16 weeks. I too have wondered about the difference in Taxol part for some women... do they receive a smaller dose, over the period of 12 weeks?

My oncologist suggested this plan stating that I am young and otherwise healthy and should be able to handle it without problems. He did say its a fairly aggressive chemo.

Good luck with your second AC, hopefully the SE will be much less for you this time.

starbeauty

I had the same treatment protocol mks16 had... but we are both grade 2.  The more aggressive grade, the larger size tumor they are trying to shrink... all may be a reason why you are getting additional treatments.  Taxol is different than the other two.  I found it to be "rough" in a different way - nerves tingling, numbness, joint pain pretty painful - found some relief with additional steroids - but some of the other sx you describe re. AC - not so much with Taxol.  Just take it one week at a time - don't look too far ahead... you can do this...

dogeyed

Thanks for the encouragement, ya'll.  From what you both say, could be since mine is agressive and larger cancer, they want to do some extra treatments.  GG

KittyDog

The difference in 4 or 8 is the dose.  I came close to doing 4 taxols.  If you get 4 dense dose meaning  a higher dose and you go every two weeks.  Some oncologist choose to do smaller dose every week to minimize the side effects.  I ended up only have three because I had an allergic reaction to it and ended up in the hospital for four days.  I now have a bad case of neuropathy.  So if I would have had the choice knowing all this I would have chosen the longer period with smaller dose.

dogeyed

Hi all,  I wanted to bump this subject back up to the top.  I have just finished #3 of 4 AC chemo, and then after #4, I get a three-week rest, whereupon I am to begin weekly Taxol for 12 weeks.  I am still concerned about how they will not do surgery until I finish the Taxol.  I want my surgery after the fourth AC.  Since my original post, I have read that weekly Taxol for 12 weeks is the most beneficial way to do the drug, both the weekly aspect and the number being good for what I got.  BUT I have a question.

Does anybody know if surgery after four AC chemos, and THEN do Taxol or some other chemo, is a good idea for those with my kind of cancer?  Which is, Invasive Ductal Carcinoma, presenting with Inflammatory clinical signs, and I do not know the size of the largest growth, but I have seen the mammograms finally and was read the ultrasound report, and I have a large, perhaps 5cm growth, with three more smaller than 2.5cm nearby (latter according to ultrasound), and the doc says I have a very aggressive cancer, it's called Grade 3 from lab report.

See, my dilemma, despite all the clinical trials and studies that say finish all the chemo and then do surgery.... I'm thinking if I got this big cancer sitting in my boob, and the chemo kills all cancer that has escaped into my body, well then, what about cancer cells that "escape" between the time of my very last chemo and the surgery?  Doc said, I suppose to counteract that, he will likely do rads, perhaps more chemo, may take a pill depending on hormone receptor stuff.  I just think if more cancer cells are going to escape enuff to do all that aftercare, then how come they won't go ahead and do surgery after #4 AC, and THEN do Taxol or whatever.

I am having a VERY hard time dealing with the AC chemo, it's just doing something to my head, not to mention my body, HURTS SO MUCH, even with my meds for it, and then I have this inescapable darkness, anger, just aching to get this thing outta my chest!!!  I looked carefully at how close it is to my chest wall in the mammo, and even the big one is PLENTY far from my chest.  I've always said if they just cut the end of my breast off, it'll all be gone.  The plan is mastectomy, no saving of it (which is fine by me), so that ought to do it.  If the cancer was indeed inflammatory, my skin will be no good and susceptible to recurrence, so I assume that's what mastectomy and rads are for, and if they think more escaped in body, perhaps more chemo.

I just WISH I could talk my doc into surgery after #4, forgettabout Taxol unless it has been shown to increase survival and decrease recurrence significantly, and I just wondered if ANYbody else out there has inflammatory cancer as part of their diagnosis, and have done or will do surgery in the middle of chemo or to shorten neoadjunctive chemo???  My REAL thoughts are as soon as they sew me up, they may want to rad me to kingdom come, but I will only allow them to do as many rads as they want BUT for only one week.  Now, my lymphs show enlargement, and I have no idea if they'll try to take them out when I have surgery, so perhaps rads will destroy what's in those?  Or do they take them out, period, and would those areas need rads?  Or if a couple or the sentinel show no cancer, well then, does that say something about it no recurrence?

I guess you can tell I am just overwhelmed by all this chemo and I CANNOT understand the harm in going ahead and getting the cancer OUTTA there.  Also, if they want to do followup chemo, I also will not allow them to do more than TWO of those.  I'm just BEYOND all this excessive treatment with toxins, they are messing up my thinking, which I've heard chemo can goof up the way the brain works (not chemo brain, but actual damage), and I think I'm one of those people.

Oh, I'll be talking to my doc, and we've discussed some of this before, and he will bend if I push him hard enough to go ahead and do surgery.  But, on the other hand, if I believe I have significant percentages of survival by doing this thing the doc's way, then obviously I would at least try.  But I just WONDER if anybody else did surgery after 4xAC chemo with IDC and inflammatory clinical presentation, and did well?   Ohhhhh, I am just so FED UP with my chemo, even tho this third one bothered my body the least, it has instead gotten to my mind much worse.  I think I need to go take a tranquilizer, I am just so stressed out.  Really, any thoughts would be welcomed, it has helped for me to just put this out there, maybe some other person like me will one day read this, and it will help them.  SURELY I'm not the only one who can see no harm in stopping all this chemo and doing the surgery, for crying out loud.  If this chemo didn't kill "escaped" cancer cells, then NOTHING will. 

I just keep thinking about Elizabeth Edwards, she got the same treatment as me, about as far along as me, in the same state as me, and while the surgery and perhaps the chemo bought her a couple years, she wound up with the cancer spreading, so makes you wonder why drag out chemo in preference to surgery if in two years I'm a gonna die anyway?  And makes me wonder if they had only gotten that cancer outta there quicker, THEN did some more chemo or whatever, then perhaps it would not have spread?  I mean, I just think there's something to my theory that if you keep the cancer in your body too long, you risk NEW cancer spreading, nevermind killing the old escapees.  And if they waited all this time to kill the escaping cancer, WHY NOT WAIT UNTIL AFTER SURGERY to do more killing of cancer?????  GG

nagem

One of the advantages of doing your chemo first is that you can see its effect on the tumor. If your tumor shrinks, you'll know the chemo has been effective, plus the surgery will be less drastic. Knowledge is power in cancer. My guess is that they'll do a sentinel node biopsy at the very least, but if you already have a swollen node, they may just proceed to a full axillary dissection. My experience is that AC was the most difficult part of the chemo regimen you're having. T was a walk in the park by comparison. And radiation was no biggy either. So if you respond as I did, you're over the hard part. The psychological issue of having a tumor in your body is difficult. I had a smaller tumor, which was removed pre-chemo, but I often wish I had had chemo first so that I would know if the chemo "worked." I've heard that MD Anderson, one of the premier cancer centers in the world, routinely does chemo first for that very reason. Good luck. It won't always be this bad--really.

dogeyed

Let me go at this another way, I think I can explain better now.  I am trying very hard to go along with chemo before surgery.  That in a nutshell is what my thread and subsequent posts are about.  Now, I had a little break with my usually organized and focused mind, I let it all out, left a message for my doc which he will never return, and I came to my senses.  So, I have my questions now narrowed down to two.  If someone knows about this, I would appreciate an verification of my thinking, but any thoughts would be great, as I am tending to freak out.

My cancer is agressive, clinically inflamatory, lymphs are swollen, growth is est. 5cm, with three other smaller ones, IDC, grade 3.  Fortunately, on the mammo done before chemo, I could see with my own eyes a significant space between chest wall and growth.  Mastectomy is the plan for when chemo is over, so there's no need to save any tissue or much skin.  I've had such a hard time with chemo, especially in my mind, altho my disabling old car wreck injuries to my spine are driving me up a wall, despite medicines, plus I don't like the usual painful muscle and skin aches, endless diarrhea, and sore feet.  I just finished #3 of 4 AC treatments every two weeks, and am SUPPOSED to continue with 12 Taxol treatments, which puts me mid-summer before surgery.

Question:  Does the total chemo regime, proved best by studies, hopefully kill escaped cancer cells wherever they are in the body so that they will not take hold and recur?  I assume this is the reason for chemo before surgery, as there is a lag time for surgery healing, which might be just enuff time for those loose cells to establish somewhere else.  That is the only reason I can understand why they would keep poisoning and killing me, because I do feel that is happening.

The notions presented by others heretofore suggest, well, you need good margins and so chemo is beneficial for that becuz it shrinks tumors... but I already have good margins.  Then there's the idea that you can reconstruct better if tumor is smaller... but I'm not keeping my breast.  And then the last one is to see if the chemo is working... but it IS working, my inflammatory clinical presentation changed immediately after my first AC chemo, in that swelling went down, pain went away, and breast looked in general better.

My next question, if my first question is correct, then, does anybody know if my kinda cancer could be surgically removed before the planned lengthy and deadly chemo is finished?  In other words, could not the AC treatments be 3 instead of 4, and could not the Taxol be 3 weeks instead of 12?  I wonder, what percentage of people survive beyond, say, ten years if they shorten the chemo regime.  If it's two people out of 100, screw the chemo, I'll cut it back.  But if it's 25 people out of 100, then I have no choice but to do all this endless chemo.

Just wondered anyone's thoughts.  And wondered if anyone who visits here managed to survive longer than three years with, say, an aggressive cancer like mine, and only 3 AC treatments and, say, 3 Taxol treatments?  When does a higher number of treatments make a significant difference in recurrence and survival rates?  I'm thinking any chemo is better than none, but maybe I'm mistaken.

Could be all this is ridiculous complicated for this sort of forum, but I don't know where in the world else to ask.  I called to ask my surgeon, but as usual he is unavailable, and no one else has volunteered to call and give me their take.  So, I ask here, on the off chance somebody knows.  Chemo is driving me crazy, but I don't want to make a mistake with any important stats on recurrence and survival.  GG

starbeauty

Your immune system is now compromised - you cancer is shrinking yes - but you are much weaker... my guess is they will not do the surgery the week after Taxol is over... but rather give your body a little time to respond.  Ask if this is true.  When they do the surgery they are going to truly know how that cancer responded to the ACT - how wide those margins really are. In my case it looked like I would have wide margins and instead there was this tiny strand going all the way to the edge of the MX/deep aspect. You are functioning from the thought that there is nothing going to your chest wall... and that is exactly what mine looked like on US too.   I hate to say this, but there are many who then go back for additional chemo to blast anything that could possibly be left or have an altered rad plan based on the findings.  My gut tells me they are trying to shrink it down/eliminate it - anything dividing is getting blitzed by the chemo - what is left after that on the pathology report tells them a lot about how to proceed.  Regarding your question about cutting the chemo short - IMO - you are playing with a grade 3 fire.  Please know you are in my thoughts today... I sense your intense anguish... I am so sorry you are hurting so much...it is incredibly important that you find peace in a decision and move on.

dogeyed

Thank you, Star.  You helped put this in perspective, along with all the others who have written in his thread.  I came to a decision, and that is to let the docs proceed.  However, I am going to be seeing my breast surgeon Tuesday when I begin the tests to approach AC #4 for Thursday, and I am going to present my top three concerns about the wisdom of going so long with chemo and so forth, and of course I will propose my original thoughts of cutting back, and let him explain why his way is best.  that way it's out of my hands, I've said my peace, and nobody gets upset with me for "endangering my life," nevermind that I think the chemo and length of it presurgery is going to kill me.  And I shall not think of recurrence, just the present, which is all we have.  But deep down inside, I shall always think of this as a big mistake, until I reach the three-year mark when recurrence numbers drop dramatically.  Then I'll be a believer. 

And Star, I knew it wasn't good for me to put myself in all this stress and turmoil, and the second I let it go, the big choke of tears in my throat went away.  GG

dogeyed

I'm back again. At this point, I need a friend who will simply support me and hold my hand.  For I have changed my mind again, I will see the doctor today, and he will be told of my decision.  My final decision is to stop the chemo now, go to surgery.  I simply cannot live with anything else.  Sure, I felt good for a few hours after I made my last decision.  But the tears came back, and I just cannot do this, ladies. 

I don't think anyone really considers my problems to be greater than continuing chemo.  But I do.  It's not like I haven't been to hell and back with other things much worse than this.  No, it's the cumulation of the sickest I have ever been in my life, thought I died twice, with this chemo.  I've also had some very strange mental brick walls, mazes ending nowhere, a feeling of dread. In addition, my heart continues to hurt, which the AC treatment will do this.  I don't sleep well at all, altho I'm not dreaming while awake anymore.  The diarrhea and body pains are absolutely dreadful, and from irritable bowel years ago I had diarrhea for six months one time, half-dozen times a day every day, and this is worse.  The body pains are particularly scary because of my spine injury, whenever it goes haywire, I get really scared.

With that said, here is what I'm gonna say to the doc.  Keep in mind, they wanted me to do eight weeks w/AC (I've done six), twelve weeks of Taxol, seven weeks 5x per week of rads, more chemo of unlimited number.  We're talking seven months fooling with my boob, and FIVE of those BEFORE SURGERY.  I got this big cancer sitting in my body, and I don't buy into this thing of survival from 40 percent to 50 percent, if I do all this crap presurgery.  I am truly terrified of the chemo, I think it will mess me up long-term, and even after I go thru every thing they ask, in less than two years, I could be dead.  I am 60 years old, I am small, frail, don't have much of a life to begin with because I cannot even go in the yard to garden.  And I'm sorry, I cannot do this.

I'm going to tell the doc to stop AC as of today, schedule surgery, and as for surgery, he's gonna remove an ovary with a cyst already agreed to, and I'm going to ask him to take that port out, and on top of it all, I'm going to tell him to remove the drains before I leave the hopital.  If he won't, I'll yank them out myself.  If they fill with fluid, I'll go to urgent care and have them drain it with a needle.  This is because I am never coming back to a medical bunch as long as I live.  I am not mad at medical, I am not mad at my doctor, I'm just DONE.

Please, will some kind soul speak to me this morning, let me cry on  your shoulder, tell me I'm not a bad person.  My husband is against it, every response here is against it, and one of my best friends on this forum, I know it would break her heart.  But everybody is so gun-ho, that no one has really HEARD ME.  Thank you.  GG 

KittyDog

Well I am so sorry you are going through so much.  I am sorry I didn't read this yesterday.  I too had a horrible time on AC.  I made it through all four rounds.  I did my Taxol as dense dose all so but I was not able to do all four.  I got so sick after my third one I ended up in the hospital for four days.  You have to set a goal.  Mine was Week one of four till I got through AC.  Then I did the same with taxol.  I never realized how sick I was until later.    Your surgery will not be immediately after chemo is stopped.  They prefer to let your body rest for three to four weeks.    I got a full month because of how weak I was. 

No matter what your decision is we are here for you.  Wishing you the best.

mrsnjband

I didn't read all of your post, but did skim them.  If you IDC is inflammatory, the reason for the chemo first is kill the cancer first before surgery.  If they don't try to kill it first, there is no way to know for sure if they get clean margins.  Inflammatory bc is a different animal than "usual" breast cancers. 

I had four dd AC every two weeks.  I was suppose to have dd taxol every 2 weeks but ended up have Taxol weekly for 8 weeks and then switched to taxotere for 3 1/2 doses.  Wish they had stayed with taxol as to taxotere.  Taxol isn't has harsh as AC but can cause some neuropathy.

I am sorry that are at the point of giving up. IBC is survivalble. 

Sending you my love & support. NJ

dogeyed

Hi Kitty and NJ !!

Sooo sweet of you two to "come to my rescue."  I talked to my doc, his nurse, and one of the head ladies on chemo, and said, "I QUIT."  The doc was exceedingly diplomatic and the long and short of it is, I'm staying on board with the entire treatment program.  He said they'd give me better pain control since my old back injury was raging, and it dawned on me that's the very reason I wound up disabled seven or eight years ago.  He also said I needed a week "off," to just stop everything, to  where I could rest and relax (I just got up from a six-hour nap in middle of day), and then he'd talk to me again in a week.  THAT was what made all the difference.   He also explained how the Inflammatory part of my diagnosis, if not done correctly, would doom me to almost immediate recurrence at the breast surgical site.  This horrified me and I was angry. 

I later come to this website and found a little forum specifically for people with IDC and IBC, there was confusion like I had, that some ladies there had, over having both types, and someone quoted a good medical source that said what my doc said about the need to avoid recurrence.  So, I was convinced, and now I realize saved.  This website is endlessly helpful, and you two ladies, amongst many others I interact with who are in my same month of chemo forum, have been unbelievably kind, and I appreciate you sharing your experiences and support. 

Thank you so mch for your concerns and timely replies.  I'm gonna hang in.  GG

starbeauty

GG - I just read your last post... and I feel soooooooo much better.  I was so worried about you.  It sounds like someone at your MD office really took a look at the whole person... and developed a plan that will actually work.  Keep us connected with your journey - I am so glad you are getting the support you need... the woman on this board are a "life line".  Gentle hugs to you GG - rest.