The Beast & Me: Round Two
Comments
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Why was she so pessimistic? You had 4 nodes, but why would she be so discouraging and what value did she put on doing her protocol with lobular. I would ask about studies at MDA where there is a great interest in lobular.One study from MDA started with taxane first. Lobular seems to have a better outcome even if the response to neo-chemo is not as robust. I know you had a mast and won't see the chemo response, but that info was developed.heck, you beat 3neg and you have hormones as an additional weapon.Beth
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TAC and TC would include a taxane. Its the adriamycin that she is concerned about.
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Ya know what, Gina, this makes me mad. That woman had no business communicating pessimism and should, instead, be telling you what she CAN do to give you the very best chance of COMPLETE recovery. As you very well know from having been around here long enough, plenty of women who have had diagnoses and prognoses far worse than yours have gone through treatments and have remained NED for many years now. This is completely possible for you too and this should be your focus, a focus spearheaded by your oncological team. Is there any way at all you can get another onc? Are you near enough to the city to be treated at MSK? There has to be some options for you in this regard..?
I did dose dense AC + T and it was completely doable. The Adriamycin caused my hair loss and mouth sores for which I used 'magic mouthwash.' With Cytoxan, it's important to drink as much water/liquid as possible because it can be toxic to your bladder. I was never nauseous and not particularly fatigued. I did run a fever and felt fluey after my first infusion, but never again after that. In order to keep my blood count up, I injected myself with daily Neupogen. That was very easy, but I did get a little bone pain and muscular aches from it. As for the Taxol, I got some neuropathy in my feet, flushes and minor fevers in the evening and, ultimately, lost my eyelashes and eyebrows after treatment ended.
I hope this helps some, Gina. I'm glad that I can't get my hands on your oncologist. Sounds like she should have gone into mortuary science or research with rats (poor rats)! However, if you do need to stick with her, perhaps you can be a source of inspiration and learning for her and then you'll both come out healed. -
I did not do TAC all at once. I did the A/C first, 6 biweekly dose dense treatments (2 more than the standard treatment) and then did 12 weekly Taxol. The A/C was hard on me, I wont lie to you but it was doable. I did the Neulasta and procrit shots from day one and that kept my blood counts up. If you do anything like this schedule, we can have a talk about support drugs. Everyone is different in how they respond, but I did a ton of homework on the drugs to help with side effects, and I would be thrill to pass on the tidbits that worked for me.
Above all please trust yourself. You know how to kick cancers butt. You kicked a triple negative cancer to the curb, you CAN and WILL kick this one too.
Hugs
Deb C -
I have heart disease in my family and so my onc used epirubicin instead of adriamycin. It's more expensive and still has a chance of heart problems but less so. Might be something to ask about.
Nancy -
I guess that no matter
how much all cancer related thing will develop,
there will be docs, unfortunately too many docs,
that will not be up or even ready
to work with some kind of patients
no matter how good they may be on their work and
how knowledge they are or may be on this area.
Just as science, patients also evolve along the time,
sometimes I think that docs are just not ready at all for them,
neither for this new generation of women from some years back,
like that Onc. and her lack of "touch"
probably she had a dumbness attack scaring you that way.
I did 4 rounds of Adriamycin plus 4 Taxol.
I remember some people, at the moment
can remember at least 3 now, that did the same as me,
had heart problems all of them and did just fine.
The only thing I can say is "watch your time" after each shot.
We all react different but I think
we all have a "timing" working around the same way during chemo.
For instance, between the third and fifth day,
was when I would get with an hangover=that thing would kick,
then would go away.
What worked for me, just around 1 or 2 hours after the each shot
I would take pills for nausea
either way wouldn't get until the end of the day;
found the same thing in pills that they use in chemo shots,
probably the name in there is different,
but would take Novoban one per day and nausea would get under control
was the only thing that worked for me.
This pills only come in packs of five, and five was the enough
one pill per day for the first 5 days after each shot,
then would stop coz there was no need.
Between the third and fifth day mainly when I was on Taxol,
before I would start to feel bad I would take painkillers.
As to neuropathy nothing worked for me and it went away
sometime after the end of chemo.
Also took Aranesp to keep the red counts up.
Kept the fluids up, and mainly when I was on Taxol
what did made a huge difference to me was to move,
I have a sedentary work and have to move and go for fresh air
mainly for my mind sake, and during it
when I would feel better would go for a walk most of every day
either way would get rusty and with that stiffing feeling.
Here's a detail that at least I never saw writen,
nor even much talked around
and you with "arm things" to deal with
may want to keep in mind when on chemo.
I asked my Onc. and we talked about it several times
and apparently a lot of women feel this
right after the first round of chemo,
mainly those that had mastec. with "the arm thing"
and the problems that come after involved.
I had a lot of lack of movement when I started chemo,
was the lack of moves, cording, some pain from the recent surgery,
plus seroma and so on, when I started chemo in a blink
and just some couple of days after,
all of the sudden I felt a HUGE, GREAT improvement,
was such that that at some point I could even reach
and move the bad side just as much as the other side, with
no pain at all and had almost 100% of all my range of moves back.
What was odd to me was that it was all of the sudden and after
and during some weeks after each chemo shot.
That can happen easily, and it's a chemo side effect,
and the mix they give us in the cocktail,
not that there good things about this, but ... this was and can be good.
Since you were/are managing all those drains and fuilds and so,
plus the arm thing, along with the LE
and the stuff around the warping back and forward,
you may want to check this kind of "changes" and "control" them.
If this happens take advantage of it by doing exercises,
and DO NOT overdo all of the sudden,
neither think you are ready to swing on a trampoline,
it's good it even helps and can help a lot on the recovery of this, but
at least I a week before the next shot, things would come back again.
So if all of the sudden you feel far better or even great around your arms,
do not overdo coz you may regret it some weeks after,
YET take advantage of it coz it can help A LOT.
If this happens and I sure hope so, can be confusing to manage,
that is ... one day we are all feathered and next one is feeling great,
but I bet you can find a way to take advantage of it.
G., you can do this, like others said, it's doable and manageable,
the only problem and you said it already, is that,
at this moment
just remember "you know too much" and that can interfere A LOT.
Even that thing of your Onc.'s chat ...
most probably if you were one this for the first time
and had no time to do your search and readings to get ready,
if you knew nothing or not much,
most probably her dumbness wouldn't have hit you that much.
Good to know you had a chance to lossen your sence of humor meanhwile,
and the birds idea for Spring sounds just great me...
can not remember whom talked about it though...
Hugs.
. -
I did TAC x 6 treatments every 3 weeks. T being Taxotere. This regimen is supposed to be the strongest we have. Honestly, I didn't have very many side effects. I, of course, lost my hair. One out of the 6 treaments, I had heartburn. I had terrible constipation that the doctor said was from the anti-nausea medication. I dealt with that with Senekot-S. I had NO nausea at all. Near the end I had a little numbness in my fingertips. That went away a few weeks after it was all over. I had no mouth sores and my fingernails were fine. I got a neulasta shot after every treatment and was able to take all treatments on time. I got a red blood cell shot the last 3 treatments. I felt okay for the first 4 days after a treatment and would feel the worst for the next 4-5 days. I had pretty bad bone pain. I'm not sure if it was from chemo or neulasta, but my onc was very free with the pain meds. I had all the darvisette and vicodin I wanted, but I mostly took darvisette as it was easier on the constipation. After chemo was over, it was maybe 2-3 months before I was off the darvisette and aleve completely. Now I take glucosamine or I have joint pain. I think that may be from just being in menopause. It really wasn't that bad. Most of my misery came from losing my hair. Silly, but true.
Shannon
Shannon -
Hi G, I did AC - 4 treatments dose dense. I was the poster child for chemo, as I did not suffer any side effects at all. I prepared for the mouth sores by getting Biotene but never used it. I took all the meds the onc gave me and experienced nausea once, and it wasn't severe; I overheard a nurse telling a new patient to listen to her body and if she needed the meds for an extra day, take them. That's what I did and didn't have any additional nausea. I was off work anyway during the time I was on chemo but I felt well enough that I probably could have worked. I had a neulasta shot the next day following every treatment. The onc had originally recommended an additional 4 taxol but after discussing it with him, the 4 additional treatments only bought me an additional 1% so he was ok with me not doing the taxol. I had a baseline EKG before starting chemo so we knew what my heart looked like. I didn't suffer any bone pain from the neulasta. It wasn't fun but it was doable. Fitchick gave you lots of good info. Drink tons of water (I didn't drink plain water so swirched to carbonated flavored water). You can do this and we are with you every step of the way.
Margaret -
Thank you so much everyone. I really appreciate all your responses.
My problem is this:
I already have heart damage from my first chemo five years ago. When I mentioned this to her she said that I will die of my cancer before I die of a heart attack... and then started trying to sell me on adriamycin.
I view this as a beatable cancer because it IS.
It is lobular. I had a bilateral. I am having my ovaries out. I am going to take AIs and I plan on LIVING.
I do not want to be a survivor who has a heart condition. I already have that now and don't want to make it worse.
Her "scare" tactic is what freaked me out. But now that I have slept on it and woke up to read your wonderful responses AND I have spoken to my old onc I have a better handle on it.
I want to do Cytoxan/Taxotere. It has been proven to be more effective than A/C. They do not know if it is more effective that TAC because it hasn't been studied yet. But both oncs agreed it is a reasonable chemo for me to do- and it is a strong chemo.
She had a computer program that was so grim and she was showing me stats and I was believing her- ME? The one who doesn't believe in stats is suddenly taking them seriously???
My BS called me last night and I was mentioning these stats were based on a ten year study- arimidex hasn't been around for ten years so how can it figure out how effective it is? He agreed with me. He also told me that the onc she wanted me to get a second opinion from is an A/C dose dense advocate so I wouldn't get very far in my fight against adriamycin.
I just have to settle down and get my bearings. I am not accustomed to being hit with the details of WHERE the cancer will recurr to and how horrible it will BE.... I am thinking NED and she has me with METS. That is so not ME.
I will probably do the T/C and use her anyway. I have to get a port and have my ovaries out before the chemo fun starts.
She was willing to go the T/C route and Maria, you are right- maybe I need to teach her a few things!
I love you guys. THANK YOU for helping me once again!!!
Love,g -
Ask for erubicin it is the same as ac. But less toxic on the heart. I had taxotere and erubicin. It is used in Europe a lot.
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No Surrender,
I suck at helping people feel better, I never say the right thing but here goes anyway. I wanted to tell you that when I log on I always look for your kitty picture knowing that whatever I read will be intelligent and positive. You also inspired me to use my kitty as a picture.
I did want to let you know that I am following your progress and I think about your situation a lot. I myself have follow up appointments this week and I know how tenuous my situation is and how quickly I can go from 2 to 4 in a matter of one test, call, or appointment.
It really is hard to digest sometimes how much there is to think about. I myself am a worrier and I really admire your constant upbeat attitude. I know if I get bad news this week, I will be drawing on your strength and outlook to help me be positive.
Newter -
Gina,
All of us with stage 3 have stats that are scarey, but even the worst have half surviving so why did was she so sure you wouldn't land heads up? That seems cruelly aggressive. Especially since you have survived an even more aggressive triple neg. I am interested in the reasoning even if she has no empathetic skills.Beth There are many ILC doing well with many more nodes. -
I also did epirubicin and was told it was less toxic on the heart than adrimycin with my cytoxin and then I did taxotere. Sounds like you have all your homework completed Gina and making great decisions.
Thinking of you.
Amy -
G -
I did fifteen weekly A/Cs. The Adriamycin was IV the Cytoxan was oral. Hair loss and fingernails you know about so I won't bother with those. I didn't get nausea at all. I have some heart issues, but didn't have any complications there. I gave myself daily Neupogen injections for my counts - also no problems there.
I did 12 weekly Taxols after that - also very doable for me. I had a little more trouble with fatigue, but managed.
I know you have so much to process here, and don't want to presume to tell you what to do, but I thought I'd share my experience. Please let me know if there are any questions I could answer for you based on my experince.
Most of all, don't let your oncs attitude get you down. They are all differnt and I'm sure it's hard, especially when you liked your old onc so much. You know how important attitude is - you are one of our biggest cheerleaders about that. We are here for you.
Big Hugs!
Anne -
Gina,
I did 4 A/C and 4 Taxotere. The taxotere left me with some permanent neuropathy in my fingers and toes, but so what? I'm still here.
How did you know about your heart damage from Adriamycin? I had a MUGA scan before chemo, but not after. My onc never tells me enough and I'm always wondering if I have bad stuff cooking and I just don't know about it.
And Gina, you don't have mets now, why does she say that you will get them? There are no absolutes in this world. Fists Up!!!! -
Gina, just reading your post about what this new onc had to say infuriated me! How dare she! I am so sorry your onc is such a negative person. You are not negative, and I sure would let her know that you plan to beat this just as you did your first bout. GRRRRRRRR
So, she's also a mind reader too? She can tell you WHERE your cancer will recur? I got the "dandelion story" from my onc the first time I saw him. He scared me to death and he was only explaining that if it spread he can treat it, but not cure it. Of course I wasn't ready to hear such crap. But in the end I loved him. He's now moved.
I think you need to tell this doctor that she needs to update her computer. Tell her her program is outdated.
If I had heart damage from the first chemo I would probably have the same attitude as you about doing Adriamycin.
I've been through the dose dense neoadjuvant AC/Taxol. The other gals have given you enough advice and description of what they went through. I think it is wise that you "insist" on the chemo that's less likely to cause more heart problems. That's just my opinion, but who am I? Certainly no doctor.
Shirley -
I think this new onc needs a bucket of 'no surrender' buttons from alaskadeb!
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LOL!!! Great Idea Althea! Gina, let me know...I'll send them for the whole office. Maybe then they will understand that you are ready to fight and WIN!
NO SURRENDER!!
Big Hugs
Deb C -
Hey girls-
Guess what?
I thought about it all day yesterday and am seeing a DIFFERENT onc today.
I really need another opinion and a doctor who will look at the glass half full and not half empty with a crack in it!
Don't know if I will like him- but it HAS to be better than this chick was!
Wish me luck!!!! -
NS -
Good luck at your appointment today. I hope that you like this onc better than the one from the other day.
Sending you hugs and good wishes,
Liz K -
Good luck with the new oncologist; hope it goes well.
Margaret -
HOLEY MOLEY G a new forum !!
Thank you Tammy and Melisa!!
G my love and prayers for you today !!
Hugs,
Carrie -
Thinking about you when you meet with the new onc, G. Hope you'll click with this one!!
Anne -
Oh, Gina...YESSS! Good for you! I know that when I'm anxious to forge ahead with something, I'm likely to cut corners and, in your case, might just have said 'WTF, I'll stick with this one.' But you didn't. I hope that this one is way better for you and gives you the support that you deserve.
It's probably good that we have this new section because I imagine that some women still in treatment or just fresh out might find the topic a little scary if it stayed under 'Moving Beyond...'. -
Mmmmmmm ...
And I always wander how
HOLEY MOLEY is written in English ...
Makes perfect sense a forum with this subject
"second or third breast cancer".
Thanks to the moderators.
Best of luck G.,
hope you tune with this one.
If not I bet Deb. will have that
bucket of 'no surrender' buttons ready!
Althea, LOL ...
Hugs. -
G,
Good for you! My thought when I read your comments about the oncologist was that "I wouldn't want that doctor treating me". I'd want someone with a positive outlook, whose objective is to have me live till I'm 95, with no recurrence along the way. You don't deserve anything less!
Good luck!!!
(Great new forum, by the way!) -
Good luck with the new onc Gina! This one's gotta be better than the other!
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HOW COOL IS THIS NEW FORUM!
THANK YOU MELISSA AND TAMI!!!!!
ok- the new onc is THE ONE.
he is really smart, really well respected, one of the top docs around here and I have a lot of confidence in him.... so much so I let him convince me to do Adriamycin!
he said because of my nodes I really need it. (also my prior tripneg history doesn't help!)
So I will be doing A then Taxol then Cytoxan.
it will be a SIX MONTH treatment plan so I guess I won't have hair again until NEXT YEAR!
I feel so much better about him.
He said without me prompting him, that because of my prior chemo experience it is necessary to not make this new tx too toxic. So by giving each agent singly two weeks apart has the effect of dose dense, but doesn't kill the rest of me.
He also said my bone marrow would be better off because of this.... who knew about that one??
Also-
No ovary removal until AFTER chemo.
The ovaries are providing estrogen, the estrogen attracts the cancer cells like bait then my chemo KILLS THEM.
Gotta love a guy who thinks like that!
I am so happy I listened to your concerns and went the extra mile and tried another doc.
WHAT WOULD I DO WITHOUT YOU??????
Love,g -
Hi Gina,
Just found this forum! Guess I don't look around too much huh. I am so glad you found an onc you like and who is ready to fight hard for you. I'm also glad to hear that chemo is first, then ovary removal. Waiting to heal after another surg seems like it would push chemo so far back. Didn't know about the benefit of having the ovaries there for chemo.
He sounds so much more positive and you sound so much better after seeing him.
Yippee for great docs who really do get it.
Happy hugs,
Sue -
Gina, that is awesome. I shopped around for another onc myself after treatment. You have to find the right match for you. There was another lady who posted about taking the chemo in individual rounds. Maybe this is the start of a new dose dense standard. I'm all for less side effects.
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