Calling all TNs
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Hi All - met with my oncologist yesterday and came up with my treatment plan - going to do neoadjuvant A/C with 12 weekly Taxol afterwards. I am anxious to get started! There was one thing the oncologist said that really surprised me and I wanted to find out what others are doing. I asked about follow-up monitoring with scans. She said they didn't do scans becuase if it comes back they wouldn't be able to cure it so there was no benefit to catching it early - that stunned me! She said they wait for symptoms, then scan, and treat to extend life. Is that what you guys heard or are there oncologists out there that do a more rigorous followup?
Thanks,
Donna
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MBJ: apparently the side effects are now: hand and foot syndrome, loosing nailbeds and have arthritis, and yesterday with a 100 degree fever found the mouth sores may prevent me from starting Taxol on Tuesday. I am gargling all day with baking soda and salt. It happened very quick and I havent' been able to eat in two days.
NEWBIES, take care of your teeth and the baking soda/salt gargle changes the ph in your mouth, you may want to do it proflactively.
thanks all, again. Pink
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LJ- I was the "Unofficially Official" photographer for my sons' wrestling team in high school. Refs got so use to seeing me on the mat shooting that I was able to settle right in with the professional photographers during the State Championships, a spot typically requiring a Press badge. Thanks for the reminder--- loved those days with my kids! Now dez all growd up :-(
Titan- aside from the "other" thread (which I read out of some sense of self-flagellation) this is the only place I come in BC.org. I do it because it is a place to chat that doesn't have to "stay on topic" (as I so obviously don't
). Only BC talk gets so... old. I like the diversification in here. I wonder though about the Triple Negative Forum--- does anyone go there anymore for anything other than this thread?)
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Busy, busy, busy......
I had the facial hair too - eeeck.... I noticed while on a mini vacation with my sister, flipped out grabbed her razor and shaved my face. Luckily it never came back.
Constipation.......mine was awful during chemo. I seemed to go from one extreme to the next. I started taking probiotic pills (also found in a lot of yogurt) daily and stool softers the day of chemo and for three or four days afterwards. It seemed to balance things out and help with the "cactus" butt.
Hope everyone is having a great day!
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dlcw: My onc told me no regular scans. I'm still not sure how I feel about that. It seems there are some on here that do have regular scans. It might give me peace of mind to have an annual PET scan, but at the same time it would be very stressful.
I also appreciate having a thread like this where we can discuss something as simple as our hair (or lack of!), or the weather, or something more serious like fear of mets. I havn't posted anywhere else, I feel like you guys are the only ones that understand this.
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dlcw:
My onc told me exactly to the word the same thing yours told you. Should I ever want to request a scan (which I do NOT want to do unless I ABSOLUTELY have to), she will oblige me and honor my request, otherwise, no symptoms, no scans.
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My doctor said no scans either. I get an annual mammogram and three physical examinations per year.
Speaking of high school wrestling....I was the "manager" of the wrestling team when I was in high school. I knew absolutely nothing about wrestling but somehow got roped into it. It turned out to be really fun and I got time off school for tournaments, plus I got to meet a lot of boys.
Just came from my daughter's 11th birthday party (her official birthday is Dec. 6th). Last year I had her party at a local trampoline centre because I needed a "turn key" type of party with no fuss as I was starting chemo on Dec. 7th. Well she liked that party so much that she asked if she could have the exact same party this year. So, back we went today. I was in a much better frame of mind this year without the fear of starting chemo in two days!
I hope everyone is having a great weekend. It's cold here. Jenn3, I hope it's warmer in New Orleans!
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Wow - I guess I'm glad to hear I didn't just happen to choose an oncologist with a particulary harsh post-treatment plan. And I'm sorry if this thread was more light-hearted than my question...I'm very new to all this, have never been on one of these boards before, and am not sure of the etiquette - so apologies if that was too much of a 'downer' of a question.
My only experience with cancer was with my son - he was dx at 3 with a rare kidney cancer. He's 6 yrs. off treatment and doing great. But, he was scanned every 3 months for 2 years, then every 6 mos. for another year, then annually for one more year. I guess I just thought that was sort of a standard post-treatment thing to do - look and see if the patient was still NED. So, I guess I'll get through the treatment part of this and not think too much about followup (yet).
Donna
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Donna:
FYI - my schedule with my onc is every three months a visit - she checks me over, does all the bloodwork, does tumor markers every 6 months and started my first one at my first visit - before the chemo. She doesn't feel they are terribly reliable, but she uses the first and all others as a base line - should they suddenly shoot up, then she knows to scan to see why they may have risen.
I see my breast surgeon every six months for mammo and US. I am now on once a year with the radiologist (but I really don't even know why I am still going to her, she just does a breast check and that's it). Don't see her again until this June. And, of course, I see my gyno once a year. It appears to be a pretty basic schedule that a lot of gals also have.
Hope that helps a bit.
Linda
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heidi- I really enjoyed going to my sons match today. Looking forward to another on Wed. I wish I was more involved I just can't devote to much time because I never know how this chemo will make me feel. I think it's great that you were there for your kids. I feel so guilty when I am at home feeling sick when I would rather be there for my son. I forced myself to go today and am so glad I did. My pain pill helped me a lot this evening.
DLCW- I'm still in a state of shock from your post. I hadn't been told this. I was told if I do get mets there are other chemos for me. I guess I've had this hope. So sorry you had to go thru that fear with your son. I can't imagine going thru that kind of fear. I hope he is doing o.k. now. By the way, what I love most about this thread is that we can say what ever we want which is such a great release. At least I haven't been scolded yet by anyone on my lack of etiquette. LOL. I'm still laughing about "Speaking of constipation" from the post (Kittykats) earlier. Hope your treatments go by quickly.
Sugar- Thats pretty cool! Your daughters birthday sounds like fun.
I think I read to much today looking up info on TNBC. I feel kind of depressed and scared right now. I sure wish all of the chemos I've already done had worked. Well sure hoping this new cocktail mix works and I can get on the same boat as a lot of you. I know it's still so scary for us all don't get me wrong. It was so nice having that time off of chemo to do surgery that I got kind of spoiled from feeling so good temporarily. I see my bi-polar coming out, sorry. Tomorrows going to be a wonderful day. I intend on making it a great day. Hope everyones week-end is great.
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Teka:
Thank you! No one had ever told me this about the radiologist - now I know why I have to continue to see her - puts a whole different perspective on what I thought was just a nuisance and waste of time. Duh!!
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Donna! You can ask any question you like..! Downer or whatever..we are here for you..please! Sometimes it helps to laugh a little too...we are all facing an enormous challenge in our lives..we have breast cancer...and we are all dealing with it..."they" say laughter is the best medicine and I believe this...we "get it"...we can laugh about our bowel movements and shaving our face but we can also cry and support our friends here when bad stuff happens.
And..deep down I wish MBJ would have slapped that woman..ha ha...
Ya know..and maybe I'm stirring that pot they talk about...but is there any TN out there that did NOT do chemo? I would seriously like to know....I think ALL of us have done chemo...I do remember one friend on here that did not..but I think her tumor was very, very tiny...
Oh..and about the scans..my onc said I could have one if I wanted one. He said that there is weird stuff in everyone's body...and that it would give me needless anxiety..I'm willing to go with that. I have said before..you guys know your bodies..you know if something is not right...
Yesterday I had a pain below my right armpit.. I think I freaked for about 12 hours..thinking cancer in my nodes...lung cancer, heart attack..you name it..I had it...anyway...that pain is GONE today....I know that I lifted several heavy boxes on Thursday...so it was muscular..
I hated that anxiety...I really don't know if I could do a scan...you would have to peel me off the walls.
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LJ: There are MORE chemos if any of get mets. We were talking about what our oncs feel about scans only being done when there are symptoms. The oncs were saying that they don't scan on a regular basis unless their are symptoms as there is no benefit to finding mets before symptoms begin than finding it after you present with symptoms as it is still considered Stage IV and there is no "cure" just treatment to keep you going as long as possible. So please, don't panic thinking there are no other chemos - there certainly are. Let's just hope that we don't have to go there.
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Titan: There are only a very very few TN's who don't get chemo. I could have been one, but chose to have it. The "line" is drawn when a tumor falls below 5 mm. Then they look at the pros and cons of chemo versus the tiny tumor and whether it's worth it in that particular case to recommend it. My tumor was 3 mm... definitely below that line. The chemo still helps by a few percentage points, and I'm 43 with a young child, so it was recommended because I wanted to be aggressive. My onc told me no one can tell a person if they would be the ONE person who would benefit from chemo with such a tiny tumor. Certainly someone falls in those few percentage points, and since we don't know if that would be me, I chose it. When I looked online, I did find a thread somewhere out there filled with the people who have these tiny tumors. Some of them, like me, still took chemo, and some didn't. The ones who didn't appear nervous about the fact they didn't have it, some of them perhaps weren't very well educated about TN when they made their decision.
As for scans, the only one I had besides the MRI prior to mx has been a ct scan, and that was for an entirely different reason. My onc has indicated no scans unless there's a reason. Glad mine isn't the only one. I was wondering about that myself and was going to find out if it was standard to do scans or not, but first trying to get through chemo. For a while, I tried to tackle everything at once as I have in the past, but this dx is larger than anything I've ever come across so now I'm just focusing on one thing at a time!
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My onc didn't give such a gloomy reason for not doing scans or bloodtypes. She said there were such a great number of false positives. If you get a false positive on say your liver, then they have to do the procedures to verify if it is cancer or not. And these procedures can be dangerous. She also said that waiting until there are symptoms of tumors in these areas will not decrease or increase your chances for survival. Not sure if I believe this one - re: ovarian cancer - i think if found before the symptoms then the chances would be better - correct me if i'm wrong.
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When I asked my ONC about follow-up she said Dr. visits and yearly mamo. I was shocked and told her with TN being so aggressive why wouldn't they do more. She did not have a real answer for me. I have been struggling with this question since I finished chemo but did not know the real answer. It is scary! I have been pretty good about living my life but this reminds how fragile all life is. What a downer - today will be down but tomorrow I'll pick myself up again (or push it to the back of my mind) and continue enjoying my life. I'd rather know the facts and truth then not. Thanks for sharing.
As for this board. I so appreciate it. Since I am doing rads now I do check that board but there is nothing better than this one. Thank you all for being there and let us get things off of our chest. Hope everyone has a nice Sunday.
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Claire82: Yup, I have a hard time swallowing that argument too. And definitely, ovarian has a very good prognosis if caught early - i.e. before symptoms. However, unless BRCA+, I was told my risk for that was not elevated. What I do worry about is mets -- and I'll never be convinced that catching a single small tumour in the brain or liver early won't have a better outcome than waiting for symptoms. I'm seeing my onc this week and plan on getting into this with her.0
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Good let us know what she says.
My FUs are a yearly mammogram on natural breast and a yearly mri on both - also every 3 months I'll either see the BS or the onc. Not sure how long this will go on - i hope 5 years - cuz then recurrence in TN is so much less.
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I have follow up's every three months with the oncologist and surgical oncologist and the radiation oncologist has me coming in this month 9 months after my last treatment with him. As for the scans, my onc said that they don't really do scans unless its warranted (i.e. pain or other symtomes in a certain area). He said that for the most part the insurance companies will deny the scans. I did have a bone scan in Oct for back pain and because I am a cancer patient it was ordered, but it confirmed my existing problems and nothing more.
Sugar - for me it's a little chilly, for you it's probably warm - 50's - 60's. The sun is shinning and we have a beautiful blue sky with a slight breeze today. My DH informed me the other day that he forgot to mail the package I was sending until sometime during the week - you should be getting it soon.
Edited: For thoe of you who are not Bengals fans - GO SAINTS!!! The Saints don't have a good track record in the cold or against losing teams this year - wish us luck today.
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Chiming in a bit late here-- my onc was one of those who did not typically do regular scans, etc. My GP is one to be very proactive with testing. My Sloan-Kettering surgeon does annual mammo.
So, I initially got a re-staging Cat scan because the onc sensed I'd feel more comfortable having one. Here's the "rub"-- it showed a few areas that warranted a six month follow-up. So far, I am slowly eliminating those questionable results by repeat testing (everything is looking benign and typical for a woman my age). I'm not worried.
BUT- be careful what you wish for. I've been kind of inadvertently sucked into the "routine testing" schedule and can't wait for my follow-up chest Cat scan in Feb. to be done with it all. After that I think I will be quite happy doing another year of 6 month mammo and then getting back to a pre-cancer schedule. Who the frick wants all these constant reminders! Not me.
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BTW, here's a peek at what I've been up to of late. It's the left and right side bookcase on either side of the fireplace in my den. I collect Dept. 56 villages (Dicken's & North Pole). This represents about 1/3 of my Dicken's Village lit houses. I haven't even started the North Pole yet...
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Here's a link to a *fantastic* slideshow of nature photography. I was going to post individual photos until I realized I could give you guys the entire link.
Enjoy!
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Heidi - that is an enormous collection!!!
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jenn-- Yep, and every one has to be individually lit, then the wires concealed, then all the trees put out, then all the people, etc., etc., etc.,-- it's a labor of love, that's for sure. My back and knees are killing me from all the stepladder climbing and bending/kneeling down to pull stuff out of boxes.
When the kids were little I also had working fountains and waterfalls but I just can't find the energy for that. I'm hoping that if I live to see my grandchildren (my sons aren't even married yet...) that I will rekindle the magic of it all.
Time will tell, I guess. Right now I'm feeling anything but magical--- just darn tired with no end in sight (have @ 150 NP houses yet to do).
Geesh, am I a glutton for punishment?
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I have been thru 4 cycles of AC chemo and my third week of Taxol. I started getting hand trembling early in my treatments and it has been getting progressively worse. None of the other patients around me are having this problem. Does anyone else have this side effect, if in fact it is a side effect.
Thanks,
Sharon
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What a beautiful collection! Magical!
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A true winter wonderland, Heidi. It is beautiful. I don't envy you the unpacking, setting up, repacking and storing though! But it is a true beauty. Thanks for sharing.
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Heidi - I love, love, love the collection! It must be such a joy for you. My mother collects Royal Doulton Bunnykins and she treasures each and everyone of them like I'm sure you do with your Village houses. Thanks for sharing.
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HeidiToo - Wow!!!!! How beautiful! Finally I feel like Christmas. I love it, it is so beautiful! Thanks for giving me a smile today!!!!!
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Laurajane - I'm glad I made you laugh! Sometimes you have to laugh at some of the crazy stuff we go through.
My onco didn't mention doing any scans on me. She did say that she will keep me in the cocoon for a while, since I was dx with bc twice in one year. I see her for a my vitamin D levels in a couple weeks and then I see her again in January, after rads. After that, she will check me every 3 months. She mentioned doing a breast MRI. She's having me take special blood tests, too (I can't remember what all they include because it's late and I have chemo brain)!
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