Calling all TNs
Comments
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back to the menopause topic....guess who is back?!?!?!? Seriously...woke up with it today....craps and all. It has been 6 months and BAM. I hate this game
Maggie
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Stoopidboob, I loved it!
I need all the ..warm fuzzies i can get right now and love to see things like that. I have two sisters and a daughter all who have long hair down to their waists. I would be upset if they shaved their heads! Lol!
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In terms of haircutting for support, I think I would have liked it had my husband shaved his, but he would have none of it at the time. Now, that my hair is finally starting to grow back, I know deep down what a difference it is to lose it from chemo vs. shaving it. Now, I see that it wouldn't have helped me much if he had shaved it, but it should helped me a LOT that he cooked many, many meals for me and took care of pretty much everything else as I was lying around too weak to do much of anything. What he did (and continues to do) means the world to me.
You all are my emotional support....no matter where I am in this journey, I feel like I can come here and write about it and you will understand and be supportive. When fear starts to creep in and it does for me multiple times during the day at this point....I just tell myself "don't go there" and start listing all the things I have to be grateful.
KSteve, that exerience with your neighbor is such a reminder how important it is to seize the day. I have several fun things planned today...I want to make the most of them.
Carpe diem!
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When I started chemo, my 2 sons shaved my head, and my husband's... it was a bit of a family party... we have a photo of dh and I looking pretty cool in dark shades, bald. I think it helped take the grimness away from the act... and I do think it helped my dh feel better, making that show of support.... nothing wrong with that, the cancer journey was rough on him too. In the end, I think we all do whatever we can to get through the dark days and for some, having others around who are also bald is less lonely.
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I'm an "animal" person so last winter everyone was buying me those crazy animal hats for my bald head. I would occasionally make the family wear them as well.
I'm sure people thought we were cray! lol..
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LookingForward & Inspired - I think I first mentioned the meditation. I am trying to learn. I have been listening to a book on DVD called "Full Catastrophe Living" that teaches it for stress relief and living in the moment. Very good. I would like to do yoga too but haven't looked into classes if anyone has any good stuff to recommend, let me know. I would like to know how you learned meditation too. It is hard for me to tune everything out, especially with the phone ringing and my cats trying to walk over me LOL!
I finished all my tests this week for the clinical trial. Still haven't gotten the HER2 results back and can't be in trial unless it is negative. It was supposed to be done by Tuesday! I am getting a port put in on Monday and start Chemo on Wednesday (I told them trial or no trial, I needed to start).
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Gilly, Simple, Stupidboobs
I think people feel they are supporting you when they shave their heads if you have cancer which is a very nice thing for them to do and it shows the sincerity of their support but to me its unnecessary. Yep Gilly, if they offer to go shopping, cook you a meal, or some other things around the house this helps and supports you so much more. My two daughters offered to shave of their hair but I said no there was no need for it as I knew they supported me 100% anyway and I didn't want them to ever be in a situation where they had to shave off their hair (because of cancer, support or for any other reason). My old feller hasn't got enough hair to shave off now but I really wouldn't want them to do it for me. Just being there for me was enough as I felt very lonely with worrying about the surgery, chemo and everything else that went with the diagnosis because I tried to stay happy and cheerful for my family's sake as I know they worried about me but to know that they were there for me, my friends were supporting me and the support I got on here was marvellous. In the end the 'hair shaving' event turned into a happy occasion as I chose when it was to be done and we all got a tremendous and much needed laugh out of it.
The biggest laugh I got was just before my hair was shaved my youngest daughter told her two children that I would lose my hair and maybe wear a wig so that they were prepared. My little Ben (4 yrs then) stood in front of me for ages just looking at me (with the same head of hair he had seen on me all of his life) and whispered to his mum "Mummy is that Nana's real hair or a wig". But it wasn't the "hair shaving" event that made me weepy it was my little Caitlin's (6yrs then) words that did that when they both stood before me and I said are you ready (for me to take off my hat) and Caitlin took one look and said "wow Nana you are so beautiful", that was what brought on the tears.
Cat I hope you manage to get your treatment started soon and that you qualify for the trial. Thinking of you every day and still deep in your pocket.
It's Saturday ladies and I think gardening might be on the agenda with my old feller. Have a good day. Sending hugs.
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CS - gardening...oh how nice. We've had a really rough winter here in Canada this year and spring arrived yesterday. Can't wait to see our flowers popping through the ground, which is still frozen. Enjoy your Saturday.
Hi ladies, just popping in to say hello. Hope you are doing well. Take care!
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Titan and LRM216 Congrats on the huge milestone! Thank you for still checking in and your continued support!
I just got the blood results from my 3 year check up-All good and in the normal range! She didn't see the need for any scans, already had the mri on my bad back. I am now on the 6 month schedule. I get my port out on April 1rst. If I can manage to lose some weight I may be able to do reconstruction, although I honestly don't know if I want to do more surgery, as my energy is still low. I would love to have reconstruction but not sure if I want to do what it takes to get there. well, I would love to lose weight.
Has anybody else had stage 3c or locally advanced triple neg that could not be removed surgically? I know gillyone had stage 3c and it is good to see you are doing so well! Anybody else? I know there are some stage 4 triple neg gals that have been ned for some time, they post on the stage 4 boards and wish they would come over here once in awhile. Even though my docs say I had a complete response and have an excellent prognoses now, I worry because of basically being stage 4, which doesn't that mean that it will most likely return? I forgot to ask my doctor. I guess most of us worry regardless of stage, but I sometimes do not know how to plan for the future, and still basically go day to day, hour to hour.
Cat-I am thinking of you and glad that you many options for treatments. My retired MO, who was deeply involved in research, really wanted me on Herceptin even though I was only +1 for her2, he saw great benefits. I will check out that book/dvd. Meditation really has helped me in the past but I also have not been able to get there lately. I had a dvd that had gentle yoga and then went into meditation. It was a great one, but I lost it and can not remember who it was! I know I got it at Costco years ago. Have your docs mentioned Avastin? do they give that to treat triple neg anymore?
Hi Cocker! Mags! KS! Sugar! Luah! StupidBoob! And hello to all of you lovely ladies!
Cocker-We adopted 3 indian runner ducks and they are adorable! So energetic already! Romi likes to follow them around, they get a bit worried but I am sure they will submit to his ways:) Someday I promise I will post photos!
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bak94 great news that your bloods are in the normal range. With regards to stages if my oncologist had said stage 1 or 2, I would have thought oh well I can get through this but when she said stage 3a I went totally numb. That is the thing that frightened me more than anything and still does. When I have those 'what if days' and wonder whether I will recur or not I always think of that bloody stage 3a and it won't go away. But I think you are doing marvellously and I really don't think you need to worry. You are three years out and that is wonderful.
I do hope you find the meditation tape. I don't think diet or exercise has anything to do with anyone getting cancer although obviously the better they are the more healthy for you, I believe it's stress. So many ladies on here suffered some sort of stress pre cancer including myself and I think meditation will help enormously. Stress is a real killer on your immune system and I don't think we realize the enormous problems it causes with our bodies so I guess meditation, laughing as much as you can, talking your problem over with a good friend or a professional, reading a good book, sitting on the beach with nothing on your mind but the sun and sea or anything else that will help you chill out will help us a lot more than anything else.
I do hope you can get a photo put up with the ducks and also Romi. I've been trying to get one on of Chloe for some time but having trouble doing it.
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Just a question, but does anybody on here suffer with high cholesterol.
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Bak94, I have an Indian runner named Captain Toast. Lol,...my son named her.
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Congrats bak94! I sometimes wonder if I'll ever truly celebrate a clean scan or good markers. I'm in the stage of thinking "what's there that they can't see"...
Cocker - I had high cholesterol but can keep it under control with meds.
Good morning ladies!
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Kathy - I read your post soon after it came through and I can't tell you how much I appreciate your kind words about my attitude and reassurance that one day cancer won't be consuming my every thought. With the BRCA2 news, I also learned that only a total hysterectomy will decrease my chances completely for ovarian cancer. It's tough news for me as you all know how badly we want children. Anyway, my point is, your message came through at such a nice time and really lifted my spirits. So thank you! I had a few good cries over the last couple days and am feeling much, much better. Ready to tackle some tough decisions. I am so very sorry to hear about your neighbor. My heart goes out to his family having to deal with his sudden death. But yes, as others have said, it's such a reminder to live life to the fullest each and every day. Exactly what I hope to do once I kick this thing to the curb. Thanks again and wishing you all the very best.
On the subject of head shaving…I also threw a party and made the act as fun and memorable as possible. I invited just a few of my closest friends and family for the actual buzz, but then had a big group of friends come over afterwards and did a big reveal. It turned out to be one of the funnest, most memorable days of my life. My husband surprised me and had my makeup done in the morning. And one of our friends happened to be in town from California and surprised me by showing up with flowers, which really added to the memories. Also, one of my friend's hobbies is photography and he offerred to come shoot some pics. I was blown away by his talent and so grateful to have the event so beautifully documented. After such an experience, I'm heavily considering starting a local charity where cancer patients can turn their crappy hair loss into a fun party. I know things like this already exist on a larger scale, but I'd love to keep mine small and local. We called my party Buzz Bash Against Cancer and I'd like to keep the name for my charity. I'm not sure if it's appropriate for me to post this link (let me know and I will gladly remove it), but here's a slideshow we put together from the day. I wish we got more pics of the after party, but we were too busy having fun!
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Bak94, congrats! That is wonderful news!
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Bak: Glad to hear of your results being good! That's great news, and thank you for the congrats. Don't post as much, but I am always up to date on how everyone's doing. I care greatly.
To all those just joining us, I wish safe, uneventful journeys with wonderful success and to those having to go back to battle, my thoughts and prayers for continued strength in attaining the good results we all pray for.
Linda
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Allydp-I am brca 1 positive. I did have a full hysterectomy also. One good thing about being brca pos is that typically we respond very well to chemo:)
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BAK - congrats on your excellent check up and for the graduation to 6-month intervals!
I also agree with what Cocker said ... you are doing so well that it may be counter-productive to start worrying at this point. There seem to be no indications that you will have to face this again, and I would keep reminding myself about the pCR. But given the fact you had a recurrence, I know this crosses your mind, as it crosses all of our minds. To answer your question, I do know of 2 people who were stage 3c and this is what I know. One is that lady I talked about here ... dx'd with 1.5cm tumor, and was 6cm before surgery3 weeks later and 11/13 nodes positive. Last summer she celebrated 10 years cancer free! In her case, she had surgery first. A second lady, housekeeper at my gym, was also stage 3c. She had a lumpectomy with no other treatment and it returned in 6 months the size of a golfball and a few nodes affected. She had radiation only and is now celebrating 5 years this year.
For other cases, can you do a search in the search field by typing in: stage3, ER-, PR-, HER2-
I have found that some people don't put the (a,b,c,) after their stage, so you might have to first find those who are stage3. In the meantime, I do have these folks you can read their profile and send them a PM just to check.
I do realize these are both 3B, but wanted to include them in case they were similar enough to your experience - it looks like HairSprayMom had some extra concerning factors as well, being on the chest wall and she is at 6.5 years out now.
CinnamonRocket - 9 year survivor! stage 3B
HairSprayMom - 6.5 year survivor! Dx 9/2007, 3b (with a 1cm and 2 cm tumor on the chest wall)
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Hi Everyone - I just wanted to say hello and wish you all a great weekend, and to anyone going through treatment to remind you to put yourself first and try to let others help you a little!
Also, to all the lurkers out there, I wanted to make sure you all know how much you are welcomed here, and to feel free to stop by and say hello.0 -
Bak - still waiting for Her2 status of lung biopsy - it was supposed to be done by last Tuesday UGH! I was initially Her2 2+ but still my onc says that you cannot get herceptin unless actually classified as positive and insurance wouldn't pay for it. I wish I could take it from everything I have read about it.
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Cat,
Have you considered having your HER2 status tested at a separate lab?
My Onc tested the HER2 at two separate labs using the same technology, and then it was also tested a third time through Genomic Health / Oncotype DX. My paperwork of the 1st 2 labs indicated that negative range for HER2 is 0 and 1+ of which I was 1+. The Oncotype DX test will also deliver a variable for HER2 score, based on a number of units. For Oncotype DX, using the HercapTest, the referenced units to qualify for an HER2 positivity is equal or greater than 11.5 units. Oncotype DX classified me as HER2 negative, because I was 7.6 with their technology. Having the extra confirmation was essential for me, to know that I was receiving the best recommended treatment.
In this link (from bc.org) it shows a result of 2+ as being borderline. With a borderline result, you may want to try another type of HER2 test for more clarity.
http://www.breastcancer.org/symptoms/diagnosis/her2
Excerpt from the above reference article: "An IHC 2+ test result is called borderline. If you have an IHC 2+ result, ask to have the tissue retested with a more precise HER2 test: the FISH test, SPoT-Light HER2 CISH test, or the Inform HER2 Dual ISH test."
Having a second lab or test confirm your results may be very beneficial, especially in your case where you would like to take a specific drug.
I will be thinking of you this week!
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Bak - They did 2 different tests the first time from one lab (borderline/equivocal) so I did ask them to test it again, and it came back negative from the second lab -Clarion in CA. The lung biopsy is being done by Clarion again so will be interesting to see if it changed from my breast biopsy.
Thanks for everyone in my pocket and thinking of me. It will be another rough week. I am still coughing up a little blood from my lung biopsy but they said that it can last 2 weeks! Yikes!
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A second lab may not yield new information if using the same technology. Perhaps find out what type of test was administered, and then check to see if they can send slides to a facility that specializes in a different HER2 test. The FISH test seems to be the standard at the labs, but the article referenced the following other types of test: SPoT-Light HER2 CISH test, or the Inform HER2 Dual ISH test. You may still be able to work off the information that is currently known (meaning no delay in treatment) but still have it forwarded to a lab that specializes in one of these other tests - just in case it finds you HER2+ to get you the medicine you preferred. I've read in another article I found this morning, that some Oncs see a benefit of the drug you mentioned with an HER1+ status.
Oh Cat, your recovery from the biopsy sounds rough. How are you feeling otherwise?
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Allydp, I just watched your video, it was beautifully done and you are beautiful! It sure brought back memories of my head shaving bash! My bf offered to shave my head when I proclaimed that I was going to take my hair-not cancer. My MO approved me sharing a bottle of champagne (that my dh and I had left over for New Years-we were awaiting the news and didn't feel like celebrating) and I see that same look in your eye that I had with that first pass of the clipper. It is a combination of utter determination to get some control mixed with sadness of what was and a touch of fear. We all go through it I know your attitude will greatly help you through this journey. I love your idea for a charity to help women turn what could be a negative into a positive! I also started a "positive affirmation" board that is in my bathroom right next to the mirror, I have pinned notes that inspire me onto it and invite others to contribute. Keep smiling, accept your down days and celebrate every chance you can!
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Hey everyone!
Sylvia..thanks so much for "stopping" over....really appreciate your kind words and your informative posts on the UK thread....and awesome to hear you are over 8 years out....
Bak....great...great...news...my heart feels so good to hear your news...you have been through alot of ***S8**.
re: the hair thing...I just let my hair fall out...big mistake..should have had a hair shaving party but it wasn't for me at the time...would have been the right thing to do though.....and about the support...well...my husband never really asked and I never encouraged it...he has big ears..and wouldn't have looked very good bald....lol....I never went "out" bald anyway so not sure how much it would have meant anyway....didn't go bald at home much either...didn't want to freak out the kids..my son was pretty shaken up by the whole thing...I needed to protect him as much as I could..that's what a mom does..
I was reading our local paper and there was an article about abortion and breast cancer..."they" say that women that have had abortions have a higher risk of breast cancer...really????? That article really pissed me off to say the least...I have never had an abortion but even if I did I would have a hard time believing that it would cause breast cancer...just another way to blame "us" for getting cancer...
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Linda..I wish there was a way to "like" your posts.....
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Hi all. It's been a while since I've been on the boards. I've been cancer free for 2 years? I have noticed some brown freckles on my nipple of the breast I had my lumpectomy and radiation on. Is that normal or should I have it looked at? Thanks for the feed back! Lisa
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Titan- like you, I never went around bald! My son was 8 then and he asked me to always wear a hat in the house and my wig when I went out. He thought if he saw me bald it would make me look sick and he was so afraid. I wanted the kids to keep going on about their usual lives. My daughter was only 5 so she really didn't understand what was going on. She is 8 now and doesn't even remember that time! I think my own vanity played a part as well. I just didn't want to go around town (a very small town) and have everyone I ran into give me the "pity" look. I had my husband shave my head in the bathroom- I cried.
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Cat, I'm sorry you are having to wait so long for the lung biopsy. It seems like weekends and holidays come at the worst times when waiting for biopsies.
I am still in the bald stage and will be for at least another month (or two or three). I always wore a cap in the beginning even at home because it was the middle of winter and I was cold. Now, I am usually topless at home even at night while I'm sleeping, but I haven't been that way out in public yet. I wouldn't mind being topless in public, but my hair is grown in really patchy in terms of color. I have a spot in the front on one side of my head that is shaped like a triangle and it's solid white....it makes it look like I'm still bald there. The rest is a combo of dark and white/grey. I don't like using chemicals, but I'm sure I'm going to do something with this hair color as soon as there is enough to color.
See what I mean? I looks even stranger in real life than it does in person.
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Bak - thanks.
Cat - sending you thoughts and prayers for a fast recovery from your biopsy, and also clear results.
Slv58, thank you so much for the nice compliment and your kind words. I love your photo. You are right. It's that same look of determination mixed in with all those other emotions. I absolutely love your positive inspiration board idea in the bathroom. What a great way to start your day every morning! Thanks too for what you said about accepting the down days. I have a hard time doing that and tend to beat myself up for it, but I'm really trying to learn to just go with it and accept it as part of the grieving and acceptance process.
Simplelife - I've read a lot of accounts of people's hair coming in white and eventually gaining back its pigment over time. Hopefully your fills in soon! I'm like you, I usually always wear a cap except at night. My hair is just starting to fall out, but it seems like it will take forever for me to go completely bald. My lashes and brows are still going strong though. Not looking forward to losing those. Your brows look full, which gives me hope that they'll either not fall out completely or come back in fairly quickly.
Hope everyone is having a nice, relaxing weekend.
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http://youtu.be/He2RJb7yYeY