CALLING ALL STAGE I SISTERS
Comments
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Can anyone tell me is CMF more "friendly" than TC? It has made me so sick the last 2 months since it the DR's won't give me any more. I don't want the SE of it, but don't want the cancer back either.
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kira...I had different chemos but A/C combination was much worse than Taxol.
I'm sure someone with the same chemo treatment will come along soon.
Again Taxol only gave me heartburn and some mild SE, I also read another sister got sick from it.
It really depends on the individual.
Hugs
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michelle - crap! crap! crap! and a few other choice words - sorry to hear you are facing another cancer. From the comments it sounds like the prognosis is very good for this one - fingers crossed for you.
anniealso - 'garden variety' BC?! What the heck? This is not a disease to be flippant about whatever the stage.
EVERYONE - especially newbies!
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Hi Rae. So good to see you. Its already Saturday afternoon there yes?
Hugs
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Hi Sheila - yep, it is 3.41pm on Saturday. And you are evening Friday? We are going to a close friend's 60th birthday bash tonight. Arghhhh - I don't know what to wear. Have some nice expensive clothes that fitted about 18 months ago but they are 'not possibles' now so I have been trying to put together an outfit that will pass for smart/casual
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A passing hello to all the newbie sisters here!
Welcome !
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Kira1234,
I doubt that the oncotest would have influenced my onco's decision: He saw a node positive so for him the treatment was chemo.
Glenis
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Welcome to all of you new ladies, including those who are going through round two. So sorry to meet you under these circumstances, but there will be so much help and encouragement you will gather here.
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Hi all, RaeinNZ, "garden variety" is what my oncologist called it.....certainly not my "flippant" comment. And I agree.
Kira, yes, CMF is often called "chemo light" by the oncologists. It's still chemo, and in no way "light" but it has a less toxic profile in terms of SEs. Most women (on the "get me thru txmnt" thread, alot of CMF-ers) were able to lead their lives, keep their jobs, exercise, but needed a few days to regroup after the txtmnts. I was node negative, some were node positive, your onc is the one to make the call about your treatment plan. Originally mine wanted me to go with the ACT, but I told him, I wanted the one that lasted longer and was less toxic. He thought it was perfectly reasonable in my case. Typically, CMF last about 6 months as infusions are only once every three weeks. It has a proven track record of being just as effective, altho again, this would depend on your particular scenario.
My onc did the oncotype test without even asking me, as due to prior rads, I couldn't do rads again. I got a 17, but had no other option than chemo.
It was not fun, but it was, perfectly do able.
Be well, all.
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Anniealso has it right - milder side effects, able to mostly lead life and so far keep hair. I had the choice of TC or CMF and because I am so allergic, went with the CMF. I promise it is not as bas as I thought it would be. I had thought a lot about doing TC to get it over with, but I am allergic to yew trees and that is a component. They felt they could manage it with lots of steroids and benadryl though. I just didn't see it is necessary to do if I had another option. So far, so good - round two starts Monday - good because it means I will be 1/2 done but bad because I have felt so darn good the last week...
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Thanks for the info. I did 1 treatment of TC, and have been fighting a breast infection due to the chemo and having had internal radiation before hand. I'm still trying to get it healed up, and the BS isn't about the suggest anything till the wound heals. It's been 2 months trying to get fixed up. Right now I'm trying to learn before I see my new Onc. next week. I fired the one I had, she was totally unwilling to work with the BS.
Karen
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Thanks, everyone. I am still learning all the acronyms. I find I can only take in so much information and then I need to take a break - usually a long one - to avoid being overwhelmed. I have my surgical follow up next week, then two onco appointments the week of the 7th. I trust things will become at least more clear over that time.
I appreciate the support, and just knowing you're out there.
Happy Halloween!
Julie
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anniealso - sorry I did not make my post clearer. I understood the onc had said 'flippant', not you. I was amazed that a professional who is dealing with women in a heightened emotional state would use such a term. Maybe he was trying to convey a good prognosis but ...0
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Hi all, I am getting caught up with reading everyone's posts since having a dbl mx recently. I feel after giving the lumpectomies a try without all clear margins and advice from my team it was the right choice for me. Recovery is going well and the advice I was given from all of you was appreciated. One thing that stayed with me was to go in for surgery with a clear mind knowing the right decision had been made. That advice helped so much and made a big difference for me. Thank you.
Michelle, I am praying for you. You were one of the first ones who wrote to me when I first found all of you and I will never forget that. I am praying for you from the bottom of my heart.
Talk soon.
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I was looking for your posts the last few days.
I know it will be 2 weeks this Monday since you have surgery.
Glad to see you are back and recovery and recovery is going well.
HUGS
♥
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RaeinNZ, I am continually amazed by his "foot in mouth" disease....I can only surmise that this is the way he reacts. I'm with him for his expertise and his heart is very kind; just that foot goes right into the mouth all the time.
Some people that really should know how to deal with it, do not. It is just one of those things, I guess. He is amazingly brilliant, but at times I wonder if I shouldn't go with someone else who wouldn't make me need to take a valium before I go and see him. In the end, I figured I only see him once every six months, he's been very kind in the main, makes me laugh, when he isn't horrifying me, but expertise won. I wasn't after him for his personality, just his smarts.
....but you are right. He's been a big part of the challenge, I just makes jokes about him now and try not to react to it. Actuallly, my own family and friends have done much the same, so i come to these boards for friends that "get" it.
xoxo
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jodimaca, do you get to have only four txtments? Lucky gal!! Congratulations on being halfway!!!
Don't fear, you won't lose your hair. If hair is to be lost (and not alot) it's usually after the third one. You will see alot in the drain, but it won't be very noticeable on your head at all. I have heavy, frizzy, thick hair, and I would sweep buckets off the floor to my eye, hubby, everyone else never noticed a thing.
I did get long layers cut, to disguise what I thought was hair loss, and no one noticed anything then, either.
It's doable. I felt so good by that third week, I went to wedding four hours away! Danced all night, too. I know women on CMF that kept working, exercising, one went to India for fun.
I chose it as i am super allergic too. No problems at all. Just heartburn.
Be well
xoxo
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Rae ~ Love the new avatar! So happy to finally 'see' you.
Hi everyone, hope your weekend is going well.
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Thanks Val - I don't like my photo being taken but this was taken recently as a committee photo so I cut out all the others and there I am - a bit fuzzy but you get the idea. How's things with you? Is your winter setting in?
Edited for typo - man, my mind is mush today - can't type anything straight!
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Hey Rae ~
It was fairly nice today with the sun out. Most of the leaves are off the trees & the wind took almost all of them out of my yard last week, but a few crunchy ones remain. I have always loved trees & love to walk about crunching them underfoot. [not the trees, just the leaves!] I'm silly, I know!
It was about 60 degrees, but it is to get into the low 30's tonight. I brought my sweaters out to look them over & it's hard to believe I'll be wearing them soon! I really do hate the snow, it is pretty but it is COLD. My cancerversary is drawing near so I am having "those" thoughts, you know, the ones in the back of your mind that you don't want moving forward, AGAIN. But, I am stronger than I was then & I will survive that 24-hour day & move into the next one. Then those memories will be put back into 'that' box until next year.
And that is due primarily to all of you here, my sisters.
♥
p.s. My mamm is Nov 9.
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Valjean - great news that you are going to be celebrating your two year cancerversary! Although I will never have another mammo again because I had a bilateral mx, I feel your anxiety. That day will be over before you know it. Do something nice for yourself to take your mind off of it if even for just an hour or two.
I llive in Illinois and it was about 60 degrees today. I am enjoying the lovely weather we've been having because I know that soon it is going to end soon. I hate winter!
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Val -
A big week for you then - 5 Nov and 9 Nov! You will glad when next week is over. Fingers crossed all is well with your mammo.
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Anniealso - Damn, that was a typo that I wish I could believe - I will not be 1/2 done, I will be 1/3 done - I have six rounds of CMF, which is really 12 treatments. Being the queen of allergic reactions was part of the decison process, but the last two years of personal hair drama also play a role in my decision.
I hope I don't lose too much hair - so selfish I know, given all the friends on here who will. Just about 18 months ago, I became allergic to hair color of any kind and had to give up my shoulder length auburn hair for a year of stripes, aka the grow-out period - I honestly didn't know how grey I had become.. (Of course this happened just prior to my son's wedding and his bride's ultra thin, ultra young looking mother would be there to rub it in). I just this summer reached happiness/acceptance of my new hair - actually, I love it as for some reason people really compliment me frequently. Oh well, easy come, easy go....
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Hi Rae...I see you. I love your avatar. Its kind of late here and chilly for my taste.
Val...We will be celebrating with you and wait for your mammogram.
(((HUGS) to my sister/friend
Hi everybody and Good Night.
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Hi, I am new to this forum stuff, and hope this is the right one--I've read many of the posts and everyone is so supportive and generous in sharing their knowledge and experiences and I didn't see another forum that would address my concerns better than this one. (But if I'm wrong, please feel free to kick me out and refer me to another one!)
I was diagnosed with IDC on August 26th, and since then have had a lumpectomy, and lucky me, another surgery to get clear margins. I got my Oncotype DX number on Friday, and it's 23. I see the oncologist on Monday to decide about treatment, and I'm wondering what others with stage 1 and an Oncotype DX number that fell within the gray area decided about having chemotherapy, and how they made their decision.
I am very anxious about all of this--and can't believe that for the first time in my life I'm hoping for a weekend to be over quickly! I want the appointment over with so that I have more information.
Thanks listening, for any help any of you can give.
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Welcome glisteningpearl - we are as diverse in personality as any community but we are sisters united by common experience and you will find information, care, support and real understanding here.
Your oncotype result is just one of many the onc should consider when deciding on chemo or not. He will assess features of your cancer like ER/PR/HER2 status, node involvement, lymphatic invasion, vascular invasion, grade and particularly the mitotic score which tells him what rate the cells are dividing, size of the tumour, stage and the oncotype result. My cancer was ER+90%/PR+80%, HER2-, 2cm, grade 2 but slow growing (mitotic score = 1) with no node involvement, or lymphatic or vascular invasion and stage 1. We do not have the oncotype test in NZ so with my stats his recommendation was 'chemo will give you a 1-2% benefit but a negative benefit of 3% because of the possible damage from the drugs' - so no chemo for me. Because my cells were so strongly hormone driven he said taking an Aromatase Inhibitor (AI) - which drops the level of estrogen in my body to virtually nothing - would be more effective for my type of cancer than chemo so I decided to take that.
Other IDC ladies will post soon I'm sure but check out the IDC forum in the Connecting with others with a similiar diagnosis forum- there will many topics on this subject I'm sure.
Best wishes for Monday.
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Glisteningpearl - On the day you wre diagnosed, I was having my lumpectomy, so I am just barely ahead of you - also in Seattle.
I had stage 1, grade 2 IDC with an oncotype of 23. It was such a hard decision as I am perpetually intermediate or gray area. Prior to the oncotype, I was feeling pretty sure I would not have chemo but the 23, well that just threw me for a loop. Consequently, I saw four oncologists and ultimately, I realized nobody was going to make the decision for me. But they did all mention that 56 is young. Here are the four opinions - well, because I am an oncologist and see people die, you probably should; I definitely would not have my wife, mother or daughter do it, the value is too small in your case; i am 60/40 for chemo; i am 50/50 on chemo. So, it came down to two things - the first, and this is really subjective/personal, was whether I would want to be sitting there in a year with an issue that I might have avoided and the second, most important, was the family meeting where my adult children and husband's faces told me the answer.
What was holding me back from the decision was a total lack of desire to do chemo and of course, FEAR. The reality of my CMF has been far less than the anxiety.
If you decide otherwise, I will completely understand as I almost did as well. I am always available for your questions - also have you been to crazy sexy cancer seattle? There is a group dinner on Nov. 16 - go take a look as I know all are welcome.
Diane
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Val - {{{HUGS}}}} for your upcoming mammo (been there done that two weeks ago) and cancerversary!! We are here for you!!! Rae - love the new 'you'! Sheila, love your plumeria avatar, the smell of them is divine. Welcome Glisteningpearl. We are a diverse yet fun group.
Glisteningpearl, a marginal Oncotype makes your choice a hard one. Mine was 17, hie high side of low and I chose no. If I had closen chemo it would have been CMF.
Whatever decision you make- we are here for you!
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Welcome Glisteningpearl. If you post your "stats" in your signature line, then maybe someone will step up who has similar Dx and Path. Sometimes you find someone who has a very similar dx, and they can help you walk through some of the questions you might have.
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Welcome Glisteningpearl and others to this great group that has been amazing to be a part of. I am in the beginning of my healing journey as well and am going to see my onc next week. He has already recommended 3 months of Taxotere each week and Herceptin, and then every three weeks Herceptin for a year and then Tamoxifin. The onc has not said a word about a oncotype test, thus am wondering if b/c I am Her+ if it is even relevant to me? I also am wondering if it is crazy with my diagnosis to consider not doing the treatment or not doing a part of it?
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