Calling all TNs
Comments
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Hi everyone! Hope you are gearing up for a delightful weekend, I know I am! We got some pretty good news from Dr. Chen at Dana Farber. My mets are really tiny, she tried to feel the nodes and couldn't. The entire tumor load is very small, so after some discussion about clinical trials, carboplatin and Xeloda, I will start Xeloda when we get back from Paris. I'll also have a biopsy to confirm it truly is BC (like, what else would it be?) and the hormone status. It's highly unlikely that it would change from negative to positive but she wants to verify it. After two months, I'll get scanned again to see if it's kicking a@@. If so, I'll continue indefinitely assuming the SEs are manageable. Otherwise, we'll move on to Carboplatin. It's a reasonable plan and, hey, I get to keep my hair for a while. I will not, however, be able to have my DIEP reconstruction surgery. That's a bit of a bummer, not sure there are many other options because I've had radiation. I'll table that for a while, talk to my PS and see if there are any other options.
Inmate, my friend - so sorry you are having a tough time. But you're a tough chick and you're not about to let this FC get the best of you! We ARE the Champions, my friend!!!
For those of you who are worried about what you eat, especially sugar, causing cancer, I might remind you that I have been diabetic for 11 years. I avoided pretty much everything white during all of the first 9 years, and I got FC. Now, I am not suggesting you all go out and binge on pizza and chocolate cake, but I also don't think you should feel guilty if you indulge on occasion and in moderation. And oh, I've never been a sugar-holic. Personally, I'd pick a bag of peanuts or a bowl of popcorn most days.
Thanks, everyone, for your support! And have a fabulous weekend!0 -
Hello everyone, I'm a new poster, but have been reading the boards for some time now, and the information provided has been very helpful.
I'm a triple-negative girl, and so far I've made it through the mastecomy, beginning of reconstruction, a port placement and reconstruction revision. After all this, I am finally about to start chemo. The revision and some dental work delayed me initially, and then my insurance caused me to look for another oncologist.
The thing that has me concerned enough to finally post is that the course of treatment recommended by my new doctor differs from my original's recommendations.
The first doctor wanted me on dose-dense AC for 4 rounds followed by 4 rounds of T.
My new doctor says that studies don't show that Adriamycin is additionally beneficial to triple-negatives, and he wants to do 6 rounds ;every 3 weeks) of TC.
Has anyone been through this treatment regime? I really like this doctor, and his reasoning sounds good. I just want to do all I can.
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I am doing 6 rounds of TC every 3 weeks followed by radiation.
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Hi Linnie - I don't really have any advice, but I saw your post and wanted to respond. It must be concerning to get two different recommendations for chemo. I had the dose dense AC +T regimen your first doc recommended. I believe it was considered standard care for TNs at the time. But that was in 2010, and things seem to change quickly in this area. I haven't kept up with all the research so I don't know what the treatment of choice is these days ....hopefully somebody will come along soon who is more knowledgeable than I am. I wish you the best of luck with your chemo.
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Linnie - welcome to the tn thread. I did four rounds of TC.
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But there are lots of us that did the dose dense routine of AC/T or DD AC followed by T times 12.
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Hi everyone, thanks for the welcome and responses.
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I was also going to respond that I was getting TC but realized that mine is Taxotere and Cyclophosphamide, not Taxotere and Cytoxan as you are getting, Linnie. I assume my TC is not the same as your TC.
Doreen
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LuvRVing - glad to hear to mets are looking small and manageable. Time to give them a good swift kick!
Inmate, sorry this chemo has been sucking so bad, but glad to hear there's only 2 left. I know how much it hurts but you can slog throught it, I know you can.
Had a bit of a scare late yesterday - apparently the PET showed no uptake anywhere other than the tumor, but the CT showed abnormalities in some vertebrae in the spine. My onc wanted me to stop everything and seemed pretty convinced they were mets. I ran home, looked through all my path reports, and found the one from 2008 showing these exact vertebrae with the exact some problems, and the CAT scan done after to rule out they were cancer. I had a different doctor back then, one who has retired, otherwise I'm sure he'd remember my major freak out back then. Anyway, all is clear. We are continuing on Plan Kick This Local Recurrance's Ass.
My Onc wants me to talk to Dr Carey (TN specialist in NC) right after surgery but before rads start, to see if that's the right approach. Going to take a lot of phone calls and juggling to make it happen, but I'm very interested in hearing what she thinks!
I am plagued by really intense nightmares. Not sure what to do about it. I'm going to the beach for a afew days before my surgery on the 24th, hopefullly that will help purge my mind of this dark horror.
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Sorry for being so AWOL over the last little bit. Since the change in the boards some of my favourites were deleted. But I'm back and happy to have found all my fav threads again.
I am sad to read about some of your recurrences, scares, problems with chemo etc. I agree with those who have said cancer sux. It SURE does. I am sending all the positive energy I have in hopes that all is well for you sisters. Hang in there xoxo
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Hi Minxie, so sorry for this most recent scare.....but so glad that it was cleared up fast. I keep all my records, too. Never know when you might need them, right? I wish i had a TN specialist in my area, Just to know that they are up on the very most recent info would be reassuring.
Welcome LinnieB. I did TAC every 3 weeks X 6 treatments (Taxotere-adriamycin-cytoxan)
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DorMac - Hi, Cytoxan is the trade/brand name and Cyclophosphamide is the generic name....they are one in the same.
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Linnie.. I had 4 rounds TC and rads
Inmate...feel better
LuvRVing...kick that cancer to the curb...
Lovelyface...I am doing the Budwig diet...think it is really good...just AM though...
McCrimmon....fingers crossed...
I am waiting on results of my tomographic mamogram. Has anyone had a tomographic mammo?
Seems I have to wait 10 days.....ugh..first one since Rx on May 26 of last year.
Been painting like crazy for 2 shows opening next week. One show gets hung tomorrow. Glad for the distraction.
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Lovely Face and Painting...I did the Budwig for about 3 weeks, breakfast only. I did start having some stomach issues so I now Budwig just a couple of times a week and feel good. I also cut back on the Flax Seed Oil....only 1 tablespoon per 1 cup of cottage cheese.
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Wrenwood47...I am getting used to the taste. It is very filling so I am only using 1 tablespoon oil too.Not sure if the proportions need to be exact but it does seem to be a food that has to be good for you.
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Thanks Sugar77 - I looked on the Medication Information sheet but didn't see Cytoxan as another name for it, just Procytox.
Linnie - I'm a new poster too, just joined last night. I am on TC every 3 weeks but only 4 treatments. I remember my oncologist mentioned AC but opted for TC for me as a better choice, possibly because I'm diabetic (diet-controlled)? I also get a Neulasta shot 24 - 48 hours after each treatment to boost marrow production. I have had my 2nd treatment and am doing really well on it so far. Because the Taxotere can cause your fingernails and toe nails to turn brown, I am given ice mitts and socks to wear during that infusion. It makes reading or knitting during the treatments impossible. The main side effects of the TC are fatigue, bone pain and hair loss, more than nausea. I have also had to deal with both mouth ulcers and thrush but have separate mouth rinses for both of those. Right now, my only issue is that I have tiny, itchy blisters and red spots in among the stubble that used to be my hair. I am trying really hard not to scratch or rub them too much.
Although I am new here, I would also like to send out mega-big {{{hugs}}} to LuvRVing, Inmate, Minxie and Lovely and Hi! to all the other lovely ladies posting here.Doreen
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Linnie - I did 4XAdrimycin/Cytoxan and 4XTaxol- dose dense (every 2 weeks). Maybe they are now taking AC out of the picture for TN's, too bad we took the red devil in 2010, which was the standard treatment for TN's. Got neulasta shots the next day.
Dormac - Hello!
Painting & Wrenwood - Thanks so much for your posts. I also did only 1 tblsp. oil, as 3 is way too much. I did 1tb oil, 2.5 tbl. CC & 1 tb. ground flaxseed. Added Brazil nuts and raisins. Delicious. I was not hungry at all until mid-day. It is very filling. From Sunday, I am starting again, just for breakfast. Today, I just did the ground flax in almond milk. Question for you two - I don't have the hand mixer yet, so have been blending in the blender. Had to add a few tablspoons of almond milk. Do you think that might have interfered with the recipe, I mean I have read somewhere that it has to be exact recipe as per Dr. Budwig. They do say we can add milk, but what about almond milk? I don't want to do dairy much.
LuvRVing - Good news! What if you come back from Paris, and they find that the tumor isn't cancer at all, what if? I will be praying really hard for you.
Minxie - Good Job remembering your last scan. I am glad you will talk to a specialist before treatment. I know the fear of this horror, my dear. I always think what will I do if I was in someone else's shoes. I know I would just pray and pray and ask God to help.
Annie - I love to hear everything you have to say, it is very delicious! I am glad you did nothing after your treatment and rested your body! And "your fellar" sounds like such a wonderful man, you are lucky. I have no man in my life, not sure if it is fortunately or unfortunately.
Painting - what is a tomographic mammo? I have just heard it from you, never heard it before. Sorry, have no idea. Google!
Hi Navy, Borntosurvive, Sugar - hope you all have a great weekend. If I missed anyone, please know that I just have very bad memory, I did read your posts and think of you.
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Doreen, thank you for sharing your experiences. I will have the Neulasta also, and be giving myself the injections...immediate reaction Yikes! But, I've done many things so far that I never dreamt I'd do. I guess I'll get myself one last manicure/pedicure for the next few months, and I do love getting my nails done, oh well.
I have some items for mouth sores given to me by my dentist. I also knew the chemo was coming and have had my hair buzzed in preparation. It seemed like a better idea to do it while I felt good, instead of waiting until I was dealing with the side effects.
An acquaintance was diagnosed on the same day as me, she's also triple-negative and started chemo last week. She suggested Clariton for the bone pain.
As a newbie here, I too would like to send good healing thoughts to the ladies dealing with recurrence.0 -
Well Ladies especially Lovely, Painting and Christina - you are all going to be so ashamed of me. After all the talk of the Budwig diet and what have you this is what my old fellar made me for dinner!!. First I had lovely sweet melon cause he knows I like something fresh in my mouth first because of ulcers, followed by deep fried camenbert with plum sauce, followed by freshly caught deep sea cod with chips and salad and then sticky date pudding and custard. So you see tbls of olive oil and cottage cheese just would not cut it with me. I could have said no to it but I didn't and more to the point I didn't think about saying no, I just sat down and ate the lot. Followed by a coffee with two sugars. Well there was salad with the fish!! Told you, you would be ashamed of me and if it hadn't been so bloody yummy I could have felt ashamed of me. What the heck am I going to do to keep up with you super slim, healthy eater, exercising ladies. I have no will power whatsoever and I think that is evident. My old fellar has fed me like this for nigh on 45 years so how can I say no. He loves to cook and I love to eat. I think my 64kg gave up long ago of even thinking of putting more weight on me. I am utterly and totally doomed after listening to you ladies, there is no hope for me whatsoever any more so I might as well carry on, do you think lol. I even finished the meal off with a ciggie, more shame on me (outside of course) . Well I had better get off now cause supper won't be long. Have a good evening. Annie.
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As for the Neulasta injections, we have visiting nurses that will come and teach you how to do the shots. I thought they would actually do them for me but apparently I can only have 3 teaching sessions - I will, of course, require 4 shots. So, the last time (2nd shot), I figured I might as well do it myself as I was going to have to do shot 4. With the nurse watching, I did it fine. It's no biggie really. I don't know about you but I can "pinch a few inches" of stomach and really didn't feel a thing. The oncologist recommended Tylenol for the pain and, as there are a zillion different types, I spoke to the pharmacist and ended up with Tylenol for Muscle Aches and Body Pain as the pain relief lasts for 8 hours.
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Annie, I loved reading your post! Some of the foods you mentioned I am not familiar with. What is cammenbert? Ohh and fresh cod?? YUMMY! Don't feel guilty about indulging. Probably did your DH good to make a meal that you love. I don't smoke but I still like a good Dirty martini or few glasses of wine! Just saying, do what you do....enjoy life.
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Hi again, gals. I have been doing a bit of cleaning and found 2 unused mastectomy bras. Jodee brand, size 38 C. 1 black 1 ivory. there is a pocket on the cups for prosthesis is one is needed. Can anyone use these? Or know someone who can? I would be happy to pay the shipping. Just PM me
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Annie - your meal sounds wonderful! How nice you have someone to cook for you! Don't feel ashamed, enjoy!
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Lovely Face - It is my understanding that you MUST use a handheld immersion blender, a regular blender does not infuse the oil into the cottage cheese, which is the whole point. Check out Amazon, they sell quite a few and some not too expensive. Since you did have some stomach issues, maybe start back up using it just a few times a week. The other days of the week, I have oatmeal with the Brazil nuts and fruit added. Take it slow and build up if you think it is necessary....not sure this needs to be taken daily. Don't over tax your system. I love the energy it gives me and like Painting says, it is very filling.
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LuvRVing, glad you've got a good plan in place. Now go enjoy Paris!
Inmate, sorry this chemo is rough.
Linnie, I did TAX x 6
Annie, your dinner sounds delish!!! So nice for hubby to cook for you too. I love dates, so I'd like to try that pudding one day.
Why can't employers call you back when they say they will. I was told by the end of the week. I didn't get a phone call. It would have been nice to know either way. Although, maybe no phone call is better than a bad one. Maybe they just haven't made up their minds yet?? Have been applying like mad, hubby is miserable in Florida and I do miss him and my babies. I, however, have been extremely busy socially. I'm booked until Tuesday... I haven't ever been this popular and it does help keep my mind from worrying.
Have a wonderful weekend ladies.
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I am one week post BMX. The drains are out. My new pathology report isn't in yet. Will have a phone consult on Monday about the new path. Saw the oncologist yesterday and she is trying to decide between two treatment options. She's going before a tumor board next week. So far, they are not talking rads. I'm a wreck waiting for the new path report though. I'm getting a Cat Scan of my abdomen next week. Terrible gastro trouble for over a year. Had a colonoscopy/endoscopy and tissue tests in February, before the cancer diagnosis. They are also going to give me a bone scan. {{sigh}} I am at a low point again. Right now I just want to sleep and sleep. I admire the courage so many of you have but I don't know where to get some myself. I'm scared for these scan results. Terrified of chemo. And ultimately afraid rads will be added. I'm 60 years old. And I'm tired. Really, freakin' tired.
Sally
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New ladies- i know you are tired, terrified and don't want to participate in this shit, so use us as your sounding board and support. We've been there and done all of that and can let you know it will get better and is do-able despite how horrible it sounds.
I have 2 beautiful expensive head scarves that our beloved MBJ sent me. I was wearing those stupid cotton cowboy kerchiefs, and I can't tell you how much better I felt wearing the silk ones she sent with the Swarovsky (sp)crystals. SO, if you would like one or both of the scarves, pm me and I will mail them out to you. I have a bunch of other nice (not cowboy) scarves and will send those out as well to whomever asks.
I have a $300 wig that sits on a stand in a closet as a reminder of who I used to be, what I used to look like...I"m kind of afraid to get rid of it BUT could be coerced into sending it out to someone really in need. Its a blondish pageboy with bangs...clearly notmy hairstyle any more. I went with my natural brown when I got hair again and am wearing it pixie short because of the convenience, so even if I did chemo again (NEVER I SAY), it would be odd.
Hugs to everyone this beautiful day~
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Clowngirl - Awww....this FC sucks, doesn't it? Sending you a hug......it will get better.
Inmate - I'm so sorry you're having a rought time with this chemo. One day at a time...
Minxie - Sorry about this latest scare. Good thing you kept all your records.
Annie - I loved reading your post. I wish I had your "old fellar" cooking for me!
Mccrimmon - Good to hear from you. One thing I know about job hunting....employers almost never get back to you when they say they will. Hope you get something soon.
Linnie - hope you feel reassured hearing that other ladies had TC.
This was the first time I've heard that adriamycin isn't automatically part of the deal for TNs anymore. On one hand, I feel a little bad......you mean I didn't have to have that damned "red devil" after all? And on the other hand, I'm just so happy that there's new research, and that progress is being made for us TNs!
Hugs to all.
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Minxie- Geez!! What a scare! I am so glad you remembered to check an old scan!! What a relief! Sending you good thoughts!
Michelle- So happy you have some "good" news! Small mets sound more manageable. Have a lovely trip!
Annie- Your meal sounds delicious! I am 17 months PFC and still don't follow the best diet. I have no will power. I say, during chemo, eat what ever tastes good and not stress about it!!
Heather- Sending good vibes for a new job soon!!
Inmate- thinking of you as always! So sorry this chemo is rough.
Linnie- Welcome. I had TC X 4. Seems both AC+T and TC are common treatments.
Clowngirl- so sorry you are having a difficult time. Yes, chemo is scary, but you will get through it with lots of love and support right here!!
Painting- what a beautiful painting! You are so talented!
Welcome DorMac!
I would like to offer an unused scarf as well (Thank you Navy and Ruth for for bringing this up). It is cotton, dark blue, light blue and ivory. It is gathered at the back to fit better and has two "tails" in the back. I realized scarves were not for me and never wore it. It was free from FranceLuxe. You can go their website and up in the upper right hand corner it says Good Wishes. Click there and order a free scarf! Oh, it also has Swarovsky crystals on one of the tails. Just PM me and will be happy to send it to whomever wants it!
Lovely- hang in there. I hope all turns out to be nothing BC related!
Bigs hugs to all of you my pea brain forgot!!
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Hi all, I am new to post here. Been hanging out on one of the chemo threads but would love to join your family. I was dx at age 45 with multiple tumors on the left. None of the tumors showed up on my recent mammo. Luckily my gyn thought she felt something and sent me to a specialist for a US. At first i though she was being overly cautious. It turns out she was a life saver. Lost my mother in 2010 to ovarian cancer. Lots of cancer on my mother's side of the family so when I got this dx, I decided they both had to go!
I have completed 3 out of 4 rounds of TC. I asked my MO about adding Adriamycin to my tx as it seemed to be pretty standard for us TNs. She advised that studies show no additional benefit adding for TNs that have no node involvement. If i had positive nodes, she would have recommended. She felt the heart risks were too great for no benefit although if I had really wanted A added to my coctail, she would add. I decided to go with her advise as she does see TN in @ 1/3 of her patients. We must have more TNs down here in GA than the national average!
Clowngirl - hang in there! Good news is you are past the surgery and have your drains out - yeah!! You can do chemo. Yes, it has some lovely side effects but they pass and you have really good days too. Keep coming back to places like this for support.
On the topic of bone pain, I found Claritin to do the trick. Really haven't had any pain if I medicate starting the day before the shot and for @ 5 days total.
Have a wonderful day0
