AC, Cytoxan AFTER I had TCH?

[Chelee]

I am so confused. I had expressed to my oncologist that I did not understand why I seem to be the only one that had such an aggressive bc and was *not* treated with AC FIRST...then followed by Taxotere, Carb, Herceptin. I told her I can't find anyone that wasn't treated with AC first with my Stage IIIA, Er & PR positive bc...also positive nodes.

This oncologist is *different* from the one that ORDERED this chemo regimen for me. (I knew nothing when I first got put on chemo.) I was just told to take this treatment...period. No choices...not explained...nothing. I just wanted to live so trusted the first oncologist.

Since I have expressed to this second oncologist I switched to that I feel I should of been put on AC first....she did agree and said that is what she would of done with me. (But as we all know...I can't go backwards...whats done is done.) I am trying to move forward and pray the Taxo, Carb, & herceptin is working? (Actually I should be starting Rads soon.)

I am done with my chemo other then weekly herceptin. My onc suggested I get a 2nd opinion and I did follow up on that last week. What I don't understand is I got HER medical notes that she SENT to this other cancer center I was going to and it says "I have explained to the patient that BCIRG data suggested that AC, Cytoxan treatment followed by Taxol & Herceptin were about the same as Taxotere, Herceptin & Carbpotin therapy. She goes on to say if she wishes I can always put her on AC & Cytoxan chemotherapy at the end of Taxo and Carb. Then she follows up with, Herceptin WILL continue for a year. I wasn't telling her I wanted more chemo...I was just asking why I did not recieve AC first like everyone else? (Just a question since it was a different onc that ordered my chemo and not her.)

But what she suggested in these notes does not sound right from everything I have read over the last six months? How can I go on AC, Cytoxan, and continue on herceptin? You can't do both at the same time?

Plus...lets say I went off the herceptin to do the AC....isn't that more risky NOW to to AC after 6 months of herceptin? I have never heard of anyone doing AC *after* Taxotere, Carb and herceptin. (But there is so much I don't know?)

Am I missing something here? I don't know why she is suggesting I do this since she is trying to tell me what I was on was just about the same...even though I don't feel thats true since I can't find anyone that has been on TCH FIRST like I have. If it was just about as good...why is she telling the other center that she can start me on the AC regimen?

I thought I was going to this other cancer center for a Rads consult...not for this? I am so lost...

Would there be any benefit at this point to go on AC & Cytoxan...when I am doing herceptin? I don't want heart damage. I thought you can't do these two together? Unless she didn't mean to put it on paper like that...and she meant I would go off herceptin while doing the AC & Cytoxan? Anyone have any ideas or opinions on this. I am just trying to get my best chances like anyone else is.

I don't know what to think...or do at this point.

Chelee

[Becky]

Well.........


If you did do the AC then you would have to go off Herceptin until the AC was over, then you could continue Herceptin afterwards.

Your onc's notes were correct, TCH is almost as effective as AC followed by TH but it has much less heart toxicity due to no A (adriamycin).

Also, the taxanes (Taxotere, Taxol, Abraxane) are excellent chemo drugs, especially for Her2. Using them with Herceptin really gives an extra punch to the way Herceptin works. And you did have Taxotere.

I would be very interested in what a second opinion onc would say about giving AC after TCH (I have heard of AC followed by TCH - I know of at least one member on this board that did this).

Good luck with you appointments and decisions.

Kind regards

Becky

[CPA]

Have you ever had any cardiac problems or are you at a high risk? If so, the TCH is a perfectly legitemate choice.

If you are high risk for cardiac issues (diabetic, obese, family history, high choleterol, etc. or some combination of these) your onc may have weighed the two options and figured the risk of cardiac damage outweighed the benefit of the anthracycline chemo.

They are finding that the anthracycline chemo regimen is probably worth the risk for a certain sub-type of her2+ cancer (TOPO2 coamplification), but the test for this is performed at very few labs and I am not sure if it is covered by many insurances. Since the TOPO2 test is not widely available, most oncs are using the AC>TH treatment by default and are dealing with any cardiac issues only if they occur.

Like many things in life, the choice of a chemo regimen is not chiseled in stone as an absolute. The BCIRG study still has not presented final (5 year) results comparing the two and no other study is more mature with a larger sample size.

If I could give you one piece of advise it is to trust your doctors.

Fighting this disease with all of the physical and emotional trauma is very hard. If you cannot trust those treating you, it is going to be even harder. In addition to your friends and family, I highly recommend working to make your doctors part of your support system - not adversaries.

From your previous posts (I have responded to a few others), it appears that you are getting relatively standard treatments. It is perfectly legitemate to get second opinions and ask questions, but realize that treating this disease (and other conditions) is sometimes a balancing act with several possible treatment options based upon risks & rewards. Very rarely in medicine is there an absolute right and wrong treatment. Quite often risks & rewards cannot be quantified and decisions are made based upon experience, discussions with the patient and sometimes even based partially upon a "hunch".

BTW, my wife chose the TCH treatment option after a lengthy discussion with a consulting oncologist at a large regional center. She has a very strong family history of cardiac issues (mother/father/brother).

[Jean]

Chelee,
Just read your post - After months of being told by three top onc. in NYC that I did NOT need chemo/herceptin I continued to check, research and follow my gut - after pushing and demanding FISH, oncotype etc. I was told by leading onc. here that yes - I should have A/C (after the tests came back) months after dx. with all that I was extremely uncomfortable with just accepting the chemo that was being offered just like that! I decided to consult and flew out to see Dr. Slamon who did perform in his lab the TOPO 11 test...I was negative and A/C would have caused an unnecessary risk for me. He advised TCH - this disease has so many unknowns - the future of bc trt will change with more personal testing of each individual tumor and NOT a blanket type approach. It is changing but ever so slowly - hopefully in the next few years we will see advancements in this area of trt. There was posted recently the result of the studies of A/C verses TCH on this site...there was a slight difference between the two - I believe it was a 3% difference. You could search and find the results, I highly suggest you do so as when I read the test studies I felt very good about the TCH trt it was very impressive. Also, Dr. Slamon felt very confident in the trt program. The major difference with the two trts was the heart toxic risk that could occur with A/C. Your trt is sound - yes - most onc. do give A/C as protocol - but we are now learning that our generation of bc women require additional testing of our tumors - this is cutting edge material and unfortunately will take additional time. I hope this helps you to feel confident in your trt. I just had a wonderful conversation the other day with a leading research Dr. from MD Anderson - most important along with our trt - is our state of mind. Positive attitude is extremely important and the mind helps heal the body.

All good wishes,
Jean

[Chelee]

CPA, As to any health issues concerning me or my family, my Dad did die of a massive heart attack at age 36. I did take that into consideration when my onc choose the TCH. But I knew NOTHING when I was first DX and didn't know about AC or anything else for that matter. My Mother has had high blood pressure but its been controled with meds. She is now 76 years old this last May and doing rather well. My brother and other family are all fine health wise.

Knowing what I do NOW verses then...I just wish my onc would of at least sat down and went over my tx plan and their choice of my chemo regimen. Nothing was discussed or talked about with me and my husband at that time. In fact I remember asking if I have any say in my treatment plan? He said "No". The only thing that he did when we first met was he got out that adjuvant sheet and told us what my chances of survial were without chemo, with chemo, combined chemo, etc. Which all of it at that time meant very little to me.

I went for my 2nd opinion at another cancer center that has been around for 30 years or more. I spent two hours with them after they reviewed my medical history, mammo's, ultrasounds, path reports, slides, family history, etc and they said they WOULD of FIRST put me on AC and did not know WHY my first onc choose the TCH for me with such an aggressive cancer?

And my NOW onc doctor that I switched to even said if I had came to her first...that would of been her choice..meaning AC first and followed by TH.
She has 22 + years behind her and my 1st onc doctor I was sent too that decided on this regimen has two years. (So there is some of my concern.)

I have NO history of heart problems...yes my Dad did. But I don't even have high blood pressure and all my ECHO'S have been fine. (Knock wood.) I just wish he would of discussed this and explained what the standard protocol was with me...and WHY he was going with the TCH. Maybe I would of been fine with it after I heard why he choose it?

I had a bad prognosis...very high risk! Nothing good about it...so it should of been AC then TH. I am stage IIIA, Her2/neu 3+++, Er & Pr positive, and 5 out of 16 positive nodes. Richardson scale 9 of 9. The big cancer center I went to did NOT see any reason that AC was not used on me...nor did my current onc. But I can't go backwards...whats done is done. I hope if nothing else anyone new on this board that was just DX and is scared out of their mind and doesn't know much about what to ask...reads this and learns they better read up, ask questions...and make sure they get answers and now they DO have a say so in their tx plan. I encourage all women to NOT just feel pressured and assume what your doctor choose is the best for you. At least do some homework.

You said one piece of advice would be for me to trust my doctors. I have..and did. I don't know why you would think I haven't?

>Your last sentence in your post to me says: Your wife CHOOSE the TCH tx option AFTER a LONG LENGTHY discussion with an oncologist at a large regional center.<

See...I did NOT have ANY options put up to me like you and your wife did. I was TOLD what my tx plan was...take it or leave it. There was NO LONG lengthy discussion with us. I would of felt so much better and had alot more trust if at any time someone would of sat down and discussed anything with me like they did with you and your wife.

All cancer centers and doctors are not the same unfortunetly for me. We have TRIED so hard to get along with these people there. We tell them we just want our questions answered...we want to know whats going on? I don't think thats asking to much. Your just suppose to take their word for everything and NOT ask them anything. My recent PET/CT scan shows things that concern me and I wanted them explained. I asked very nicely. She just said it looks fine to her and for me not to worry about it. (That is not good enough for me.) With stage IIIA, positive nodes...I have a right to know. My pet/ct scan says, increased uptake in the lymph nodes the right carotid space. I wanted that explained to me to calm my fears since my bc was on the RIGHT side. Plus I have a BIG puffy deal sticking out in that spot...but she tells me its nothing.

I don't know how I can have complete trust when I can't get answers. Even the report says it should be looked into. I have to get all my records myself now to find out whats going on with me. I have been so nice to these doctors..there is no reason for this.

I am going to have to go PAY a oncologist some where else to get answers. Most people have oncologist like you do that take the time to talk, dicuss and calm someones worries. I am so glad most are like what you and your wife deal with...because no one going through bc should have to deal with what I have had too.

It draining enough physcially and emotionally to have bc. Then not taking time to explain things to us. I get promised that they will have MORE time at the next visit...I believe them...and it never happens. I walk away worried they aren't telling me something when they do this. :(

I am use to doctors working with you...not against you. The other cancer center I went to told me this one sounds like its run like a MILL. Not my words...theirs.

I will be seeing my surgeon soon for a follow up since its after my chemo. At least he has been great from day one and I know he will answer my questions if he can. Thats all I want.

Thanks very much for your reply CPA. I will just pray and have faith that TCH does it for me. I do know it is a good regimen. Wishing you and your wife all the best.

Chelee

[Unregistered]

I got 3 ACs and didn't do the 4th because I was too sick. I remember thinking I was in oncology hell and I was close to hating my oncologist. I was very scared and sick. You sound very scared too. If you are not taking anti anxiety med, you might consider it. I never took any antidepressant/antianxiety meds regularly until I got cancer. I figure if there is any time to take it, this is it. I can deal with getting off it after I'm finished treatment.

I agree with other who wrote that there is so much to know yet, and knowledge is changing every day. This morning I asked my radiation oc about synergy between herceptin and radiation. He said he hadn't heard anything yet, but that could mean he hadn't read the literature yet because knowledge changes every week in cancer treatment.

When I was agonizing over whether to take the 4th AC, my oncologist told me that it would probably be okay not to take it because there is some evidence that it doesn't help ER/PR positive women as much as they'd thought. For Jean, A/C wouldn't have been effective because her TOPOII test was negative. I think doctors who follow the literature are constantly re evaluating and changing treatment.

If you feel you need a third opinion, I think you should get it. But it also sounds like your treatment is going to knock the H*** out of your cancer.
I wish you (and me) many years of health Mary Jo

[LynnC]

Chelee,

Knowing my treatment may help you. I'm going to the #1 rated oncologist in Kansas City, Mo., rated by The Squire. The Squire asks Greater Kansas City physicians to select the Best in various specialties. Physicians were asked "If you or your family needed treatment, which physician would you choose in the following specialties?"

DX 4/7/06
ER PR -
IIIC
Her2+++
tumor 5+ cm
positive lymph nodes underarm and collarbone

Treatment: 12 weeks Herceptin and Taxol (On my 10th week and the Dr. is so very impressed that the tumor is shrinking!)
8 weeks every other week Adriamycin and Cytoxan
surgery
after surgery 6 weeks radiation
then 1 year Herceptin (not sure if the 12 weeks done 1st will count towards this)
Since I'm not ER or PR + there will be some drugs that are different.
LynnC

[Chelee]

Hi Becky, I have read up on the taxanes and they are a good choice to use. I just know given the choice most all onc doctors with my stage bc would go with AC first. But like someone said, no one study or treatment is set in stone. What works great for one...might not for another. I have read up on the TCH and I do know it IS a good regimen. So I will just move on to Rads as planned and continue on my herceptin and know that what I have got will kick bc behind.

I will admit, I do wish my oco at that time would of explained my chemo choices and why they perfer one over the other...but it wasn't done...so now I just need to stay positive and move forward. :)

As far as the OTHER cancer center I went to for the 2nd opinion...I didn't get a very good answer about going on AC & Cytoxan now that I have already been on the TCH for six months? The onc just said that I COULD do that if I wanted too...but I would have to drop the herceptin while I did it. (That wasn't much help to me because I already knew that.) That onc doctor did say it is USUALLY done the other way around though. Meaning the AC followed by TH...and not the way they are offering it to me.

I don't want heart damage so I will just stay on my weekly herceptin and see how it goes. In time maybe we will find out the TCH really is the better choice in the long run for some people? I sure wish they did more testing like that TOPOII and other tests to see which cancer will react to which chemo drugs better. That would be great. Hopefully one of these days...and soon for best results.

Chelee

[Chelee]

Hi Jean, I am glad to hear you were really going with your gut and using your head. As we all know that have had this bc DX...its very overwhelming and scary when you first hear the news. Its so hard to wrap your head around it. One day all is well with the world so to speak...then BAM...your world is turned upside down.

In your case look how many different opinions you got. That makes things even more difficult...you don't know what to think or who to believe. Its a good thing you kept going and got to see Dr. Slamon. :) For three onc to tell you that you did NOT need chemo...that would of concerned me too.

I sure wish I would of knew about that TOPO II test. I would of loved to of been tested before I started any chemo to see which would of worked better with me.

You mentioned that you thought there was a 3% difference in the AC verses the TCH chemo? You might be right...I thought it was 11%...but knowing me I am WRONG. LOL I will do a search here and see if I can find it. I know its been brought up here before. Alot depends on how someone respones to a certain chemo...what works for one doesn't always work for someone else. So hopefully the TCH was a good choice for me. I know I DO feel better about less chance of heart toxicity with the TCH.

I was a little concerned having landed in the hospital the first month...and MISSING an entire month of Taxo, Carb and herceptin. That concerned me...what was the cancer cells doing for that entire month?

I was looking up my/our rights in bc tx. And it says "Your doctor MUST tell you about your medical condition & about what different treatments can do for you. Many txs have side affects. Your doctor MUST offer you information about serious problems that medical treatment is likely to cause you.

It goes on to say, Often more than one treatment might help you -- and people have different ideas about which is best. Your doctors can tell you which txs are available to you, but your doctor CAN'T choose for you. That CHOICE depends on what is important to you.

I WISH I knew all this when I started because when it says a doctor MUST tell you about your medical condition, side affects, and the different treatments...and that its MY CHOICE....not one of these were done with me! Nothing was discussed. I do mean...NOTHING! I was told the cancer board met...discussed my case...and I was handed a paper telling me what drugs I WOULD be doing for chemo. (Period.) I had NO SAY in any of it. Why do they make these RIGHTS if they don't have to follow them?

My onc did NOT tell me what treatments were available to me. They say he CAN'T choose for me. Well he DID. In fact I asked if I had any say in it...he flat out told ME no I don't. (Nicely mind you...its not like he was nasty...he just told me the way things would go if I choose to do chemo.) Now six months later I find out I HAD all these RIGHTS that not one doctor explained to me. Its a bit frustrating!

Like with you Jean, it sure sounds like most the doctors took the time to explain things to you...even if you knew in your gut it wasn't what was right for you. Then you went to Dr. Slamon and he took the time to explain and go over your entire treatment plan. Also when I read CPA's reply...he said their doctor sat down and had a LONG lengthy discussion with them. Thats what a GOOD oncologist SHOULD do...and now I find out its YOUR right that they do this. So you all have fantastic onc doctors. :)

I can't wait till its the standard of care where they HAVE to test a womens tumor before starting treatment. That is going to be so beneficial in my opinion. I feel that is whats really necessary here. I sure they will soon enough. I can't wait...it will save so many women going through additional chemo's and such.

You are right about a positive attitude Jean...and even though I have been frustrated with my tx plan...believe it or not I have been feeling pretty positive about the whole thing. I REALLY have. :) Thanks so much for your post Jean. Here's wishing you well and sending you warm and healing thoughts. :)

Chelee

[Jean]

Chelle,

When we are dx with bc it is a shock - we are all aware that 1 of 7 will be dx.
But do we ever really believe that one will or could be us? Especially when the woman is so very young. This is a shocking disease becasue at any age NO one is ready or prepared. Top that with running to find information about the disease and then proceed to discover all the research and new meds that are out there this takes much time. You visit top onc. and first believe that of course these men and women are correct, after all this is their profession.
But like everything else in life - whether it is a butcher, baker or candle stick maker - they are human and of course the medical profession will follow protocol for fear of being sued. As Dr. Slamon said - doctors have to practice medicine, it is after all an art and a science. Most important of all and all the women on the site will say the same thing "We must be our own advocates in fighting this disease." The first onc I saw at Cornell was arrogant and refused my request for a FISH test to confirm if I was her2 !
Could you even imagine a dr. saying no? Then I demanded it and told her to do as I requested which took another month. I finally had to fire her and hire a new Dr. who did order the FISH. This all sounds strange and as I have always said the dx. was easy it was the journey that was difficult. If you are an early stager it can almost be worst because you are looked at as if you are just a little bit pregnant - when I heard I had her2 /+++ size of my tumor was not my issue the type and aggressive nature of my cancer was my focus.
You have found this wonderful site which has the most powerful women who dig and search and turn over every stone of information and cutting edge information. So you are in the right place here with a wealth of brillant
women and men. We may have had the bad luck of getting bc - but we also have gained in finding this site. It is a powerful instrument. Would you believe today I had my 3rd chemo trt. and when I met with the onc. that Dr. Slamon referred to me in New Jersey the subject of the TOPO 11 came up
and he said the following, well I hope Dr. Slamon is correct with the TOPO 11
etc. I just looked at him and realized that his ego is amazing - I then asked him do you thing he is wrong, he replied, " well he is brillent and is usually correct," I asked myself then why did you even make this comment or said what you did? He is a great dr. in his own right but, that ego had to surface because he had to take orders from Dr. Slamon. So you see we not only have to deal with the bc itself but the emotions of the professionals who often times do not like to be questioned. The secure ones do not mind questions or time spent to answer or review new research. Much has changed with the internet and some dr. do not appreciate the contact and the information available to their patients. No all the onc. for many have wonderful dr. who will sit down and discuss the most important aspect of their health care. You would not keep anyone whom you are employing who does not treat you, the customer correctly. If your dr. does not treat you fair and correct, fire them and get the medical attention that you should have and deserve to have. If I treated any of my clients in this manner I would be concerned that I would out of business or worse brought up on charges. It will get better because you are aware now and will protect yourself and you will get your questions answered. Even if you have to do the research yourself. Let me know when you hear from Lillie - she is great at returning emails. Wishing you all the best...

Jean

[MJo]

Oh Jean, you are so right about doctor egos. I guess you have to have a big ego to take responsibility for human life, but it's not great to be a patient caught in the middle. I haven't had your challenges, but I've heard comments. My surgeon made a sarcastic comment about my oncologist: "Maybe someone out there is smarter than Dr. G----." Then I hear that my surgeon, who is considered one of the best, refuses to be part of the new cancer center. These doctors are humans -- compassionate, spiteful, kind, arrogant -- even insecure... MJO

[Jean]

MJOE - so good to hear from you - hope all is going well for you with the radiation...how is the eveing appt. going? Thinking of you...
Yes, ego's are an interesting topic....it is unfortuante that some must engage in a p-----g contest....
But I refuse to join ! Had to chuckle at your close when you describe some of them - does sound like pre-school children!

With all good wishes and prayers.
Jean

[Chelee]

Jean, Great post. It is so true that no one thinks this will happen to them. I know I certainly didn't. I have no cancer in my family...I've had check ups...then you get this news and your world is turned upside down in seconds...never to be the same again.

Your SO RIGHT when you say we HAVE to be our own advocates. I learned that the hard way. You want so badly to just trust your onc doc...but I find you HAVE to do your own homework and research as all oncologist have different ideas about what should be done. It gets confusing at times! Its so time consuming just making all your doctors appts, lab work, scans, and you name it. Its like a FULL time job without the pay. Then you ADD all the time online to check out..and research what you have been told...and it doesn't leave one much time to relax and enjoy it seems. There is so much to learn, and know about this dreaded disease.

I can relate to you Jean about the FISH test. They WEREN'T going to do one on me either. I had to PUSH them SEVERAL times till it was done. So I know what you mean. The only difference with my oco is I was told several times they WOULD do the FISH...then I would wait a week or so..and ask them...only to find out it STILL HAD NOT been done. But I finally got them to do it. But one should NOT have to work that hard. The FISH IS important as you know.

Your onc at cornell that flat out told you NO is a bit much. Mine never really say no....they LEAD me on to believe they ARE going to do whatever it is I ask for or need. But then it NEVER happens till I continue to bring it up. So you must of been in SHOCK to hear flat out "No" about your FISH test. Wow!

Also like you...I had to fire my first onc doctor...and now I am on my second one. Which I liked alot at first...but now I am running into alot of problems with this one too. But I have heard others down at this place complaining about many of the same things I am. So its not just me.

Its awful to have to fire your doctor and start all over again. There are some really *awesome* doctors out there that really care. But then there are others that just seem to forget we are even human it seems? They need to STOP and ask themselves if this is how they would treat THEIR own wife, husband, mother, father, brother, sister, or their own childern. (for some of them...I think NOT!) Its those few bad doctors that make it harder on the REALLY GOOD ones...and there ARE plenty of them still...thank goodness. Its just finding them. If you find a good one...they usually AREN'T accepting new patients. (You can't win.)

Jean, I am sure sorry to hear all the nonsense you had to go through to get where your at now. How frustrating to say the least...but thankfully through all that you wound up in the right hands. :) One positive thing came out of it.

I sure wish I could change again to a new doctor...but whats bad for me is in my HMO...you are IN what they call a GROUP. These doctors are all connected to one hospital where you would go if need be. You CANNOT go OUT of this group of doctors unless you pay out of pocket which for most of us is impossible and these doctors know it. (Your allowed one 2nd opinion...but you CAN'T use another doctor or hospital.) ARGH!

So even though I fired my first onc...I had to go to one in the same building...they are all friends/peers. We can only change ONCE a year to a new plan. And right now as far as I know its only Kasier and that would not work for us. Been there...done that. Never again.

So I feel stuck. I would like to change doctors again...but not sure it would change a thing at this point? I just don't know why this is happening to me? Its bad enough to have bc...and stage III...but to have doctors that won't give you the time of day is a nightmare. Our health care system needs a complete over haul in my opinion. The bigger the HMO's get...the more control they have over the doctors and the care we get. (I am glad to have insurance...but there has to be some major improvements for us patients.)

Good point you made about if you treated your clients the way some of our doctors treat us that you would be fired. Boy...you got that right. But most these doctors KNOW they are safe when in these HMO's...or so it seems to me.

Wow Jean, that one doctor you mentioned really DID have QUITE the EGO didn't he. With a ego like that...did you get a chance to see if his head fit through the doors he tried to walk through. lol (takes all kinds...huh.)

I haven't gotten to write Lillie yet..but I sure plan too. I am looking forward to it. :) Thanks a million Jean.

Chelee

[fourboysmom]

Hi Chelee,

I was catching up on reading posts, and came across yours.
Yes, I got T/C/H first , then A/C, then Herceptin alone for a year. I was in a study at Dana farber in Boston. It showed the women who received this combo had powerful results. That T/C/H was strong stuff. It shrunk my tumor from 6cms to 0.3 cm. I then had a mastectomy. I still needed a mastectomy because of alot of calcifications...so There is proof the T/C/H worked. I got the A/C post mastectomy. Had a little trouble with low counts after such cumulative chemo but I feel good now...still getting Herceptin till August.....Good luck! Love, Janet in CT

[Jean]

Janet,
What wonderful news to hear that your tumor shank down to such a tiny
size! Great! Great! Happy to hear your results with theTCH treatments.
Also that you continue to progress....keep going...and please keep letting
us know how you are....

All Good Wishes and Prayers,
Jean

[Chelee]

Hi Janet, Thank YOU SO MUCH for posting to me. I can't find many people that did the TCH regimen. I have read up on it and it has proven to be a good one. But I much like hearing it from people that have actually been on it like you. :)

My cancer center were offering me AC and Cytoxan now that I am done with the TCH if I wanted it? Which means I would have to go off herceptin. They missed my point...Its not that I didn't feel TCH wasn't any good...I just wondered why everyone and their brother had AC first?

So you were in a study at Dana Farbar. If I understand this right...you had the TCH BEFORE your mastectomy in order to shrink the tumor...right? Then after your surgery you had the AC followed by herceptin. Sounds like it worked great. I am so glad to hear it worked so well. (I wonder if I SHOULD follow up with AC & Cytoxan like they mentioned to me?) All these decisions are so hard. Thanks again for posting to me.

Chelee

[dawn]

Im trying to understand the abbreviations for the treatment regimes. Im on 6 treatments of taxotere, adriamyacin and cyclophosphamide. I do my cycle every three weeks and it takes about 3 hours to complete. While doing the hour of taxotere I have to soak my finger nails in ice. Does anyone else out there do the same treatment or does this sound really off base. In my community I dont know of anyone else on it. My oncs are fantastic as are my nurses and they always try to help anyway they can.
Dawn

[Chelee]

Dawn, Don't feel bad. Its been six months of this nightmare for me and I still don't know all the abbreviations for all the chemo regimens. So many of these women know then all and then some. lol Its not easy to learn all this stuff...its takes a while.. (Speaking for myself anyway...because I have learned alot...but have a LONG WAYS to go still.)

I will see if I can find this one website I USE to have. It had all the abbreviations for most all of the chemo regimens. It is very helpful. If I find it...I will post it for you. :)

The adriamyacin you are getting is called "AC". That seems to be the standard of care with chemo. Just about everyone gets that to start with...so thats a good one for you. I had the Taxotere...which they will say "T" for. But I do believe T can stand for Taxotere OR Taxol? I might be wrong. I am not sure what the cyclophosphamide is? I think it might be "Cytoxan".

I do know all three of those drugs are good ones for going after and kicking cancer behind. So seems like a good choice.

There are other people here that can be of much more help then me. Good luck with your chemo...its not fun but it is very doable as they say.

Chelee

[Bev]

Hi Dawn, I think the ice thing is to ward off pain from taxotere. My nurse said to take B6 for the same purpose. I had no pain, although I know of others that did, but I might have just been lucky this time. BB

[chrislmelb]

So AC/T is andromycin, cyclophos. and taxol/taxotere. Sounds like good stuff with the Herceptin.
Christine

[chrisy]

The ice thing is to protect the nail beds by reducing blood flow to that area. Taxotere can cause damage to the nails including losing your nails. The risk of getting mets to your toes and fingertips is pretty low so it's "safe". At my onc's office people bring in frozen peas. They put the peas on their fingers and toes during the taxotere infusion and then the chemo angels put them in the freezer for next time! One really lucky lady brought her husband to treatments and when she was done with her peas he always rubbed her feet...now that's support!
It did always make me wonder if you draped bags of frozen peas on your head during the infusion, would that keep you from losing your hair or just give you the mother of all ice-cream headaches???

[juanita]

chelee, I feel for you in your quest to get answers from your onc. my first one told me what treatment I would be doing and when i tried to ask questions he usually wouldn't answer them. or if he did and i didn't understand it and tried asking a different way to see if i'd get a different answer that i could understand he always answered in the same way. he never told me anything positive about the percentages, just how many people die, and that really scared the you know what out of me. i did 2 cycles tac and was very violently ill. i even threw up all over his office and he did nothing to try and keep me from being so sick. it turns out part of that with the second cycle could have been avoided because the nurse didn't give me the premed of aloxi (i think that was what it's called). when i decided enough was enough after the 2 treatments and told him i wanted to quit the treatments he made me feel like i was going to be dying in the very near future. (i'm stage 1, grade 3) I cried for days, until i saw the rad onc and he talked to me more about it all and told me my outlook was very good having caught it so early. i refused to go back to that first onc and my surgeon recommended the one i currently have, who is very great. (the first was in my family doc's network). i was making a notebook of copies of all of my records and tests and when i got the ones from the first onc he had written in my file that i refused to consider any other treatment options. bull! i was never offered any! i didn't even realize till i first saw my current onc that there were other options. with him i did 6 cycles cmf. and should be getting ready to finish my one year of herceptin. so hang in there. i have my fingers crossed for you that you will be as lucky in finding someone who cares for you as much as my onc does now.

[Chelee]

Chrisy, Thanks for the GOOD laugh. I lol...and I still am laughing at your comment about how your wonder if you put bags of frozen peas on your head during the infusion if it would save you from losing your hair or give you the Mother of all headaches. Oh my gosh...TOO FUNNY.

I did that Taxotere...wish I would of tried that. LMAO I would of loved to save my hair. It would of been hilarious to be sitting in my infusion chair with bags of peas or ice on my head and watch the STARES & strange looks from all the people that would walk in there for their infusion. I would of never been able to keep a straight face. (I would be a big conversation piece in there if I had done that.) I HAVE to quit thinking about this....my brain must be fried today...because I CAN'T quit laughing about this. I LOVE your sense of humor.

Now on the serious side of this. I had heard mention of putting ice or something cold on the finger nails. I never did this and my nails ARE a nice purple/black color. (Oh so very pretty.) LOL Only the last three fingers on each hand for some reason? The thumb and index finger nail is fine? Plus my toe nails on the left side are purple...but NOT on the right side? Guess the chemo didn't make it that far? (Strange?)

My nails are a bit sensitive and I have been waiting for the three on each hand to fall off...but so far they haven't? (Knock on wood.) I never did see anyone put anything cold on their finger nails or I might of tried it. Well...to late for me.

But I do know the taxotere WILL take a toll on your nails...mine are proof of that. I just don't know why only some of them...and not all?

Chelee

[Chelee]

Juanita, I am so sorry you had to go through that with your first oncologist. Sounds like you can really relate to what I have been going through. Isn't it just awful to have them TELL you what your going to do and when you ask a question you don't get a straight answer. My onc talks and doesn't say anything if you know what I mean. (I would think it was just me...but my husband has been in there every time with me...they don't tell me anything!)

And like your doctor put in your medical notes that you flat out refused other options. I went through something just like that. I got my notes that were SENT to this OTHER cancer center I was going to for my 2nd opinion...and the LIES in there were unreal. I was beyond PISSED! My onco doc made up things that just were NOT true to make herself look good. But I fixed that when I got to my 2nd opinion. :)

Your first onc doctor sounds just like the one I was dealing with. Isn't it awful when they won't say anything positive at all. They make you feel like your going to be lucky to be alive in a WEEK. Thats what mine did. This second one hasn't said anything either to make me feel any better.

I am SO GLAD you ended up finding a doctor that cares. Thats all I want. I have NEVER had this problem in my life...and of all the times to have it is when I have cancer. :( All my doctors have always been good about explaining things to me and making sure I have no questions.

Even with my chemo..I was NEVER giving my tx options..I was told I would take TCH...nothing else..period. Now I find out by LAW they are suppose to give you all your options. They didn't give me any.

At least you got to throw up all over HIS office. :) I feel sorry for you and that it happened...but that serves HIM right. But with the meds they have today...shame on him. He just didn't care it sounds like.

[Chelee]

Juanita, I wasn't quite done with that last post to you...it got away from me? Don't know what happened...but it sent itself? Or my fingers hit something?

But thanks for your post...at least I don't feel like I am the ONLY one to get a onc doctor like I did. Yours could of been the brother to the one I first had. This second one I have...she has been a LITTLE better...but still not enough to make me happy. I just don't know WHY they won't answer a simple question for me or my husband. Do they really like stressing me out and having me worried all the time thinking they are hiding things from me?

Its cruel. When I see things on my PET scan that don't sound good and she can't take the time to anwser my questions about it...there is no excuse for it. I have had TWO PET/CT scans since this started. The first onc doc did NOT go over my scan with me...nor show it to me. And now this second onc I changed to did that same thing. Never discussed it with me or showed it to me. I have copies of it...but when I put it in my laptop...I need a doctor to go over with me. And soon I will FIND one. :) Even if I have to pay out of pocket.

Thanks so much for your post Junita. I am seriously happy that you landed in good hands finally. I know how frustrating it is to have a doctor like the one you mentioned. Thats just awful. Hang in there...

Chelee

[Bev]

Did not know that about the nails. Only developed one black streak on thumb. Chemo cleared my toenails up. The new growth is clear and white where the old is yellowed and bumpy. hope this isn't too much info but at least something positive happened. BB

[janet/FL]

An ice cap on the head is done in some places and someone on another list said that she did not lose her hair due to the ice cap. I believe she lives in Europe and it was supplied by her infusion center.
However, I have read that a study was done and the fear is that the chemo would not be reaching areas in brain with an ice cap, thus allowing brain mets. Since I didn't know if this was true or not, I skipped the ice cap but did go with the frozen peas on my nails when I had Taxotere. My nails were fine, in fact, they seemed to grown in faster and stronger. But the Herceptin makes them very thin and weak but I only have one more Herceptin treatment to finish the year--weak nails are nothing if Herceptin stops reoccurance.!
Janet