Calling all TNs
Comments
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Titan - come on over then girl. I'll put me best frock on, spruce up the old feller and I'll even put a bow in Chloe's hair (not a pink one). I'll put the jug on (kettle) and we've got some lovely fresh cream cakes to go with it. You will be very welcome.
Stupidboobs - I'm sorry you are going through so much crap in your life. Would it help to take the dogs for several short little walks each day. They need a walk and it might help you to get some fresh air and it could improve your motivation. What about five smaller meals per day. They reckon you can lose some weight like that. I also have lymphoedema in my left arm which is twice the size of the other one but it's a case of carry on because I have to type. Your lymphocytes might not be low enough to cause your doctor to be concerned but you need to discuss it the next time you see her. Hoping your hubby will get a job soon so that will ease the stress on you.
Lookingforw - I hope you manage to shake of that cold soon and that you are feeling better by now. My family have a sort of intercom (phone) whenever anyone is sick and we all agree to stay away until its done it worse. Luckily we all live in Taupo as well.
Tekwriter - gotcha now with the housekeeping but make sure you still don't over do it. When I was going through chemo my work set me up at home and I could work when I wanted to and not if I didn't. It was really good because on the days I was having the dexamethasone it would keep me up all night so I would type all night. I would go down to work the next day and load up the computer stick and away I would go again. It also kept my mind occupied instead of on cancer all the time.
Gilly - did you get my post abut New Zealand? I would be interested in your comments, good or bad.
Well ladies I have had a long weekend this week, Fri to Mon and its been bliss. Got all my housework done early, got the gardening done and the washing and ironing and even went to look at another car with my old feller. My little two door Toyota RAV4 is getting a bit older now but I do still love it. Believe it or not it's a deep rose pink!!! though it does have grey at the bottom. It only takes me five mins to get to work so it's been ideal for just me. The old feller needs a bigger car and likes a bigger one. Typically the days went quick and it's back to work tomorrow. I don't really mind though because its a great place to work. There are about 36 staff and 12 doctors and I love every one of them. We have so many laughs.
Have a good day tomorrow ladies. Love and hugs to you all. Annie xx
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Thanks Cocker_Spaniel all good ideas...............:)
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HI all, thanks for the tips. I seriously listen to my body and when I am tired I stop even if it is in the middle of soemthing. My disability plan does not work that way. If I work part time I need to be there. It will mess up my time. I am not sure what will happen during my next phase of chemo when it is not so bad. We will see. I know it will go for a year but by then I will be on long term disability and if i want to work i will have to start all over when i need to go back for surgery and things I am not sure it is worth it. We will just have to wait and see. I think I have enough comorbities to keep me happily here at home.
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I have a question I'm hoping someone can answer. When I had my breast biopsy, I was told it was TNBC but 2% of the cells were ER+. I haven't had my surgery yet still finishing up chemo. Today I saw Rad Onc and he said it could be ER+ and I should talk with my MO about hormonal therapy. Would they consider 2% of cells enough to consider it ER+? I did BRCA testing but haven't gotten the results back yet. Has anyone had that low ER+ cells?
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Hi Gram. The general rule is that anything under 5% is considered negative. However, some MOs feel that any % positive should be followed up with Tamoxifen and others do not. I am 3% + and my MO treats me as negative and did not prescribe Tamoxifen saying the side effects would outweigh the benefits. I would certainly ask your MO what he/she feels is best for you.
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Hey Cocker - yes this is my first time on for a few days. I'm trying not to come here every day. Like Titan, the five year mark is on the not-too-distant horizon (June), for whatever that's worth, so I don't have a lot to offer to newbies, except support.
So yes - DH and I spent almost five months in NZ (October-March). He is a college professor and had a sabbatical year, 2008-09. So this was immediately prior to BC. We were based in Christchurch and rented a flat right down town and loved it. We did not have a car and did lots of stuff in Christchurch using public transportation, and rented a car wen we wanted to take a trip. We spent most of our time on the South Island and did some very touristy things like the fjords, Mt Cook, Queenstown where DH did a bungy jump at that original bridge. A lot of the time we simply "lived" in Christchurch, doing every day things like going to the library, walking to get fresh fish (often!), the bakery and the greengrocer's - walking everywhere. We played badminton and table tennis at places where people knew what they were doing. In the US, badminton is considered a game to play outside on your lawn!!!! DH is a squash player and played several times a week. We spent just two weeks on the North Island, visiting Wellington, Rotaroa and Auckland, then flew to Sydney (Brisbane and then Cairns) before returning to the US. We had a great time and would love to visit again. You may recollect I am from England, and it was lovely to go to the little shops and buy pies and cakes etc. We loved being able to get a huge variety of fresh fish so easily. Seems so long ago now...
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cream cakes and whatever you have in that kettle sound lovely....I'll wear my best frock too!
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So much good news from everyone!!!!! (Dormac, Adagio, AL Husband and everyone I forgot)
On my IPhone so I have to keep it short .....or lose my mind..
Simple, were you the person concerned about ALND and exercise? I was concerned after surgery, not because I'm doing exercise, but because I have you do a lot of heavy yard work. My BS said the more I used it the better!! I didn't do any special exercise after surgery, but I did stretch the arm and made it do everything the other one did. The ALND was really no big deal for me. One tip: make sure you have someone measure your arm at various levels ( wrist, forearm, above elbow, etc) so you have a baseline to evaluate any problems by.
LRM - your girls are beautiful and I think she comes home because she loves her Nana.
Annie - just to reassure you.......I still have a tarped over hole in my roof!!! The combo of 6 mo of chemo, Mom almost dieing and an insurance company that doesn't want to pay a fair amount put it on the back burner till I was feeling better. Hopefully I'll be hell on wheels once the good weather comes.
LP - I only got initial scans also. When "I thought" my cancer reoccurred, I went by the 2 week rule. I told two oncology practitioners (4 months apart) that I thought my cancer was back, and they didn't listen. I had to go to my primary to get a CAT to prove it. Because of that fact my doctors are practicing a little "tails tucked between the legs medicine" . My doctors now do scans when something warrents it.
Titan - I'll be joining you at Annie's for tea and cream cakes but I ain't wearing no DAMN frock!!!!!
I saw my BS Thursday and she couldn't have been nicer. They are biopsying my breast Thursday. They are not sure if they can get the rogue lymph nodes, but I have an appt. with her after the biopsy, and that's probably what they want to discuss. I hope she's right and it's just inflammation, but I brought her some objective info that made her stop and think. She thinks it's inflammation because the uptake was mild at 1.7. I asked a kind of trick question......"what uptake would you expect to see with cancer?" She said in the 4 to 5 range. At that point I directed her to my previous reoccurrence PET, where the cancerous tumor only uptook at a mild 2.3. Since she knew how that story turned out......it made her stop and think. The other good news was that if the biopsy is positive, I actually may qualify for the new Enzalutamide clinical trial. (But they're only taking 80 patients, so I know my odds would be slim). Even if I don't make this trial it's nice to know there's a chance for me in the future.
My friends and I have been laughing our asses off all week. I always knew I have "big balls", but I didn't know it was gonna come back to bite me in the arse! It amuses me that I have something that is histologically similar to prostate cancer in my boob!
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Ooops, forgot.
Stupidboob, you're in my thoughts. Be kind to yourself!!!! You have enough stress in your life to fill a pool. Keep it simple. Just try and do something every day that brings you joy, even if it's as simple as reading a good book or watching a good movie.
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Kathy, thanks for sharing your experience about exercise after an ALND. I love to bicycle and I also do a lot of heavy gardening. It's good to know you haven't had problems with exercise after your ALND. I hope things go well with your biopsy and you get good results.
Stupidboob/Sadie, I'm a newbie here, but I just want to say we're here to support you. I know from my own past experience (before being diagnosed with BC) that I knew how to eat right, but was just too depressed or unmotivated to do it. Sometimes, "bad" food is what helps us get through the rough times. It's okay. We each do what we need to do. I hope your new puppy is bringing you love and snuggles and laughter.
Tekwriter, I just finished chemo 2 weeks ago. For the last 5 months while I was going through it, I rarely had the energy to clean. Sometimes the kitchen floor drives me nuts, but I don't clean it and I don't ask hubby to either. He's been doing a lot to care for me....I've just had to learn to go with the flow on how the house looks at times. I know eventually my strength with come back enough to clean that floor, but today is not that day.
Yesterday was a llttle frustrating, my heart rate kept going up like a rocket when I would try to get on our elliptical to SLOWLY exercise. I'm guessing that it might be a bit of a low red blood cell count issue since I've just barely finished my last AC. I believe everything is okay and this is all just part of the normal recovery process. I just would like to have as much stamina as possible for my surgery in 15 days. I've been drinking fresh green veggie juices three times a day in addition to eating really healthy to try to give my body all the nutrients it needs to help repair itself after chemo. There's just not a lot more that I can do to speed this recovery process along.
I'm looking forward to this afternoon. My husband and I started going to a weekly ballroom dance class at the local senior center right after I got diagnosed last August. They happened to take a winter break that was perfectly timed with when I was going through the worst of the AC chemo. Today is the first class they have had since early December and I'm going to be able to go! I doubt I'll be able to be on my feet for the whole hour, but it will be so much fun to get back to it. I used to have to drag myself to the class while I was doing my 12 weeks of Taxol, but I ALWAYS walked out feeling a thousand times better. I think it's the combination of music, movement and just focusing on trying to learn a new step (thus taking my mind off cancer for a nanosecond at a time) that makes me enjoy the classes so much.
I had hair when I went to my last class, now I'm completely hairless. I don't think I'll fuss with my wig and makeup today (don't have that much energy yet). I think I'll just wear a soft cap and go. I'm not real big on vanity....I'm more about comfort. It will be okay.
For everyone dealing with this bitter cold in the USA, stay warm! The days are getting longer and spring can't be that far away!!
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Gramo, I had a little higher PR positive in one of my four tumors when they were biopsied after mastectomies. Talked to two oncologists and for different reasons both said the potential benefit was "probably" not worth the side effects of the hormonal. Said I could think about it and even if I decided now not to go on one I could change my mind later. So far (6 months since these conversations) I've opted not to. Mixed feelings about this...hope I'm making the right decision.
Hugs,
Peggy
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Gramof2Boys my results came back borderline on HER2 and my MO is planning to treat me as positive on the HER2 with targeted therapy because he feels it was more positive than negative.
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Peggy, I feel the same way regarding an anti-hormonal- mixed feelings! On one hand I'm glad I am not taking because I hear side effects can be rough, but on the other will it negatively effect me later if I don't take one!! Cancer makes me crazy with all the "what ifs"!!
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Texwriter - I am sitting this morning looking at the mess that has accumulated because I was to worn out during chemo to worry about cleaning. (I kid you not. I'm afraid to look under the bed. I know there's no dust bunnies because the coyotes bred and ate them!!!)
I just want to remind everyone that the American Cancer Society does provide housekeeping services to people going through treatment. (I don't remember exactly but I think it was 3 hours a week).
It's a resource we need to keep in mind and to remind our sisters that it's out there for those who need it.
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hi all
logged in after many days. 6 chemos done and 2 left
read almost all the posts i missed. sending love and hugs to all of you.
TifJ, Tek, Gram and Peggy .. even i have the same query. I have hormonal component 15 percent. My Mo will repeat the test and if it still comes the same he will put me in Tamox.
But my Her2 score was +2( borderline) in IHC ( post surgery). They did a FISH and it came negative. What does it mean? does it mean some of my cells in the tumor were her2 positive, which will remain untreated. I finished 4 acs and 2 taxols. I guess its too late to have this query.
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BanR how are you feeling? I had my second Taxol and so far feeling normal. Sending good thoughts to your way.
Hope everybody else is doing well also.
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Jianchi- I hope this treatment treats you nicely!
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Tif, thank you!!! I will have to say that it's so far really much better than the AC. Although I had the fainting experience at first, I think it was an unnecessary accident. I was told to skip the neulasta as well as my white counts were doing good.
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Glad to hear the Taxol is taking it easier on you! Woo Hoo to good white counts!
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*waves Hi to TifJ*
Jianchi - I had the reverse of yours with Taxol first. I never had to use the Neulasta during Taxol.......so woo hoo, you may be all done with that.
BanR - my initial her2 came back slightly positive but my FISH was negative. If I remember correctly the FISH is a much more accurate test that the quick one they do after surgery.
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Hi everyone,
New to this forum,looking for some encouragement! Dx in August, finishing chemo in 3 weeks and I'm beginning to panic! Feeling that loss of control-the what do I do next feeling. I know I'll have some test after chemo ends, so that leaves me anxious-I had some lymph node involvement. I'm just so stuck in my head right now-trying in vain to lose weight but hopeful that when chemo ends it will get better. But right now I'm feeling fat, bald, lopsided(lost 1 implant) and just not myself. But really most of all I'm terrified that chemo didn't get it all. Sorry for this long post of poor me but it can be hard to express this to my loved ones without immediately hearing that everything will be fine, chemo worked, the end of chemo and cancer will be all behind you etc.
I guess I'm asking how everyone handles the next step, the wait and see phase? I'm a stay at home mom so in stay pretty busy and am really trying to focus on my 3 little girls but any ideas will help and be appreciated!
Thank you everyone
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Breezy - Welcome to the website you never wanted to visit. I understand. Things will get better, but in the meantime you will learn to put aside some worry and focus on the moment. The worry may never go away completely, but a new normal will gradually set in. I'm 3 years out and stil wonder if...... I see you live in the very North so you probably can't get outside and go for walks, etc. (I live in sunny, and currently very warm, California and still don't do enough of that.) With 3 little girls I'm sure you keep very busy, but could you get together with a friend for lunch every week or so? Sometimes that is the only way I get out of my rut and get "news" from beyond my 4 walls. Please come here often for support and sometimes even a little fun. Best wishes from someone who has been there. Jan
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thanks JAN69! Yeah, the weather has been especially difficult. It makes getting out much harder!
Thanks for the kind words
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Breezy: Welcome! I was diagnosed about the same time as you. I did neoadjuvant chemo and just finished a couple weeks ago. My surgery is in two more weeks. I have rads to do after that so it will be a few more months before I'm finished with initial treatment. I think about the same thing you do....how to cope once the focus is off of treatment. I spent the first few months after diagnosis in a panic. I probably had the equivalent of PTSD. I finally realized that I just couldn't live in a constant state of fear and crying. I don't know if you read self-help books much, but one that has helped me tremendously with all this is called "Loving What Is" by Byron Katie. She has something called "The Work" which can be applied to any problem...big or small. It actually has worked for me on all kinds of things since I read her book a couple months ago. Somehow, that book really has helped me get to a place of acceptance with what is going on. It's not to say that I never get scared or that I don't cry about it anymore, but I'm much more able to move out of that dark place and on to other things. Don't know if that helps any, but I just thought I would share what is currently helping me a lot.
Ban and Jianchi: Hang in there. Having just finished my last chemo two weeks ago, I'm AMAZED at how much better I'm feeling already. It won't be long for either of you before you are done. It's a great feeling to have that part of treatment over.
I am feeling SO much better today than even yesterday. I think my red blood cell counts are coming back up after finishing with AC. My heart rate isn't skyrocketing today with the slightest exercise. Hubby and I went to our first ball room dance class since early December yesterday afternoon. It was wonderful to be out around people. I had to sit down a rest alot, but everybody there understood. Today, I have been up and doing things all day around the house. After five months of chemo, there is a lot of clutter here. I have been enjoying to be able to make a nice dent in that. It makes me feel better not to have to look at things lying around. I'm so happy just to feel somewhat normal!
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Hey Breezy! the end of treatment is always a freaky kind of thing...just concentrate on getting yourself back....chemo can do alot of crap to your body so you need to recover from that....plus all the emotions you have gone through the past few months...expect to feel better..little by little...I just kept track from week to week...asked myself ..do i feel better than a week ago..and usually the answer was yes...(yeah..talking to yourself is good..lol)....takes time......you will still be seeing the onc..and that is a good thing....believe me..you will not be dropped off the radar by any means....
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Kathy and Simplelife4real: thank you both for the encouragement!
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Breezy, totally going through the same exact thing! Diagnosed around the same time and have recently finished chemo. I feel like I haven't figured out my "new normal..." I agree, the weather is not helping and restless kids being off school makes it even harder. This is a great site for support though!
Kate
wwww.katebeatingcancer.blogspot.com
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thanks Titan! It's just an overwhelming feeling! I think I just want to hop back into my life-what things were like 5 months ago. I think I just need to take it slow like you said. Thanks!
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Jianchi: after my 2nd taxol, i am more or less fine. I am sure we all agree that taxol doesnt lower counts too much, doesnt cause nausea. etc
Simplelife : so good to hear the worst is over for you. i hope your surgery goes well and you achieve a PCR
did they put markers round your tumor before chemo? Kathy: thanks for your reply. its reassuring to hear from others who had her borderline and Fish negative, and how they got treated. I came across an article a few days ago which says that her borderline tumors should be treated for herceptin inspite of Fish being negative. Got a little worried after that.
Breezy: sending love and good wishes to you. we are all together in this journey! I am sure after my chemos get over I will get the same worry on and off.
And good to hear from you Titan.. you are close to your 5 year mark! YaY!!! do share something about your diagnosis and treatment etc
love n hugs to all
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Hi Ladies,
Saw my oncologist today, got my treatment plan.
Chemo again...starts Feb 11/14. Pic line being inserted next Wednesday
as my veins are crap from my first round of chemo in 2005/6.I am having 4 rounds of TC (taxotere and cytoxan) once every 3 weeks with a neulesta injection 24 hours after each chemo.
My
new bc was triple negative, 1 cm and a grade 1. My oncologist said as
they cant do oncotype testing on triple negative tumours and the fact
that triple negative is a pretty aggressive cancer he doesnt want me to
take the chance
and have it come back with a vengence. I am also still youngish, 49.
Also, my lymph nodes cant be tested as I had 23 removed the first go
around with bc.I will also have a CT scan, bone scan and a chest xray prior to the start
of my treatment.I
am angry that I am going down this path again after 8 years of being
cancer free....I guess I am lucky that I did my prophy mast when I did
in December, oncologist even commented on whether or not it would have
been picked up with regular screening due to dense breast tissue.Michele
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