Calling all TNs
Comments
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Welcome Molawmom! Sleeplessness was huge for me when going through treatment. My doctor prescribed ambien for me. It worked to get me through that time. I recently went off of it and now am struggling once again to get the proper rest. Talk to your doctor about it and see if there is a solution. It may just be the steroids they have you on during treatment and the insomnia may go away once finished for you
as far as preparing for mastectomy and recon-- I am still trudging through that myself. I had tons of radiation which has made for a long haul for me as implants were just not a good option for me so I chose natural recon using my own body fat. my bmx was the first step for me before the chemo and rads. then i waited 8 months before starting to rebuild. I wish that I had not allowed the doctor to do a sentinal node biopsy on the non cancer side until after the path report had come back. Doing it along with the mast. has increased my risk of Lymphedema on that side and I also lost some sensation on that side from it. My cancer side...leftie as I affectionately call it has full blown LE. Research as much as you can for your options. Ask lots of questions and get as many medical opinions as you feel are necessary to make the best decision for YOU. I traveled to have the natural recon. New Orleans has a super hospital and center there that caters to BC patients and specializes in natural recon. explore all options. You can find lots of threads on this website with lots of helpful tips and advice. Wishing you all the best.
Maggie
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Making some progress...
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I recently started having trouble sleeping and asked my Dr. for ambian also. I was fine until Taxol. It is the days around infusion I cannot sleep.
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I used Ativan (lorazepam) for those sleepless nights. It helped stop my mind from racing with all the what ifs. I stayed on it for a year then gradually weaned myself off. It is addictive and should not be stopped cold turkey! It's great for relaxing before a scan as well!
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Inspired-thank you for your information on vitamin d. Will definitely discuss with my mo at next visit which is this Monday 4/21 which is MY LAST CHEMO!!! "No mo' chemo!!!!!". Maybe they can do the vit d test from blood work done normally on that day. Last time I ordered vit d3 I got it from vitacost and it was a small powdered capsule. (Dudnt know it was going to be in a differrnt form)I was used to the clear small capsules. Don't know the difference. I like taking with all my other vitamins in the morning, that way I remember.
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Lisa my wife was able to get her Vit D test with the routine blood work. Doc didn't even order it...she just asked for it when they were drawing blood.
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Cocker I am one of the people who asked a specific question that Dolce was responding to. I Do understand your need to be positive, and usually am. I have to say Dolce has never made me feel as down as reading that one response of yours to her. So See it can be all in our own perspective, yes? I want to know more about my life after cancer, here is where I learn more. If you need something different, this BCO forum has hundreds of threads, something for absolutely everyone. Isn't that what has drawn us all together?
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Bluebird, I hope you are stronger each day. I see a pair of your namesake bluebirds outside making their annual nest by my fence post, Spring has hit and it is welcomed. Little Bluebird enjoy the day. Meadow
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wow, we have to pay for vitamin D testing! I'm happy I did though because after 9 months taking 2000 a day, my level was at the low end of normal, so I upped it to 3000.
Debra sorry for late reply my internet was down, I usually put broccoli, or kale or spinach, protein powder, Greek yogurt, frozen fruit, a bit of honey, cinnamon and enough water to thin a bit.
As far as not being single to sleep, my onc suggested melatonin sub lingually and to keep taking it for a couple weeks to see if it would work for me. I found the very first night I slept better. I kept taking it every night until I felt I had built up a new pattern of sleeping, then discontinued . I do take it the odd night if I wake in the middle of the night and sense I'm too awake!
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Mags, I just read about your lymphodema, so sorry to hear about that. Can I ask when you first noticed symptoms? was it right after surgery, did it creep up on you?
Mo I am in Springfield too and would be happy to meet you some time. As far as reconstruction, I chose to have implants at my mastectomy, my plastic surgeon did have concerns about that as I had to have 33 radiation treatments and the skin definitely has changes that affect the shape. I just could not go the tram route, it just wasn't an option for me although the tummy tuck was VERY appealing! So far I think the radiated implant has held up good, I see my plastic surgeon soon he can tell me what he thinks and if some enhancements could make it better. So now you have two recon stories, and are probably as confused as possible!
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Hi ladies...I heard the news this morning about Samantha Harris, past host on DWTS. This news has sent me into a tizzy. Seems like when I get myself together mentally, I take 10 steps backwards and become all gloom and doom. My MO did prescribe Zolodt for me, and initially it seemed to work. Now I'm in such a dark place after reading material on the internet about TNBC. I am so tired of crying and being sad, and it seems no one understands how I feel. Please, any suggestions on how I can conquer this. As a side note, my MO said my prognosis was excellent. I had the MammaPrint test which said I have a 90 percent change of not recurring. I just find everything so difficult to believe especially when I read info on the internet saying prognosis for TNBC is poor. It makes me physically sick to my stomach.
Have any if you felt this way? I apologize for sounding so negative, but I can't get myself together. I am off work for another week. Just had final exchange surgery on the 9th. And it doesn't help that this is my second time dealing with breast cancer. It was a new primary in the opposite breast.
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Shorfi - I think what you are doing (reading lots of things on the internet) can be oh so dangerous. I did it too at first. And then I realized that I was never going to find what I was looking for. I wanted to see what my "chances" are of dying soon from TNBC. Well that wasn't productive. I was never going to be happy or reassured with what I read. Die soon? Live long? I decided I needed to listen to my MO and believe that I have a good prognosis. Hard, I know, and sometimes I get down with the side effects, mostly lymphedema issues. When you go back to work you might be hit with all those sympathetic offerings. Perhaps you could tell them all you really need is for them to tell you some really good jokes. That just might perk up the atmosphere. Good luck from someone who has been there. Jan
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Shorfi, be kind to yourself, you have been through a lot. Don't expect to process everything on a schedule, but if you feel that you are abnormally depressed, can you ask for a referral to talk to someone? I think we all go through the fear and sadness, none of us expected to be here. I know I dipped my foot in the pool of darkness but was able to turn that around. My aunt who had gone through breast cancer years ago told me to start a grateful journal and every day look for something to write in it. Some days it was very difficult for me and only a couple words were written. Some days I could only post a picture, but you know what...after some time I actually looked forward to starting my day and finding something to put in my journal. Doing this for my difficult year has turned sadness/fear into a true joy. Now every day I try to say or do something nice for someone. I don't know if this helps you but it's worth a try!
And stop reading things on the internet! Come here for comfort and support!
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I haven't posted here in a while. I'm a third of the way through rads and fatigue has set in much quicker than I expected.
Inspired, in my book, you are a very positive and supportive person. I appreciate all your comments. I like the idea of putting broccoli in your juice/smoothie. I was adding broccoli to mine for a a while and then somehow it dropped off my radar screen. Thanks for the reminder.
Fiercebluebird....wishing you the best.
Hugs to all,
Kay
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Cocker Spaniel,I miss the way the thread was in the "old" days,less stats,more personal,I guess!
Even tho,I haven't posted much! I read it everyday! I want you to know your humorous posts got me thru some dark days,I really miss them!! Thank you so much for being you:)))
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Cocker Annie Ditto what belleeast just wrote. Jan
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Meadow I did not say Inspired was not positive I said her posts on recurrence were not positive. You are correct in saying that the last few posts have been in answer to questions however, previous to that it was post after post, day after day on recurrence. And yes, those posts may me feel down because they were so frequent. Of course recurrence goes through our minds, often, and probably always will but I for one do not need to see this on a daily basis. The newbies are trying to fight with their diagnosis, treatment and coming to terms with dealing with this cancer beast and don't need the added worry of recurrence and the ladies who have gone on to find their new normal need to be encouraged to continue that way. It is totally unnecessary and unfair when you are trying to cope with treatment or trying to stay happy and positive.
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Cocker, I think we agree on more points than we disagree, I want to be happy and positive, laugh and even cry together, and be known by others going through this. I also have a lot to learn, and this is where I come to learn, from the sisters who are so knowledgeable. I was not on the forum before last month, and I do not know how it was a few years ago, but I have every confidence it was as wonderful as it is today. It is hard to read a persons' tone in the printed text we communicate with, and so perhaps your post to Dolce was not intended to be as harsh as it sounded to me. I find I am very tender with my feelings even more than ever these days, and we all have enough on our plates without having to defend ourselves. I find that brings me down, I just cannot deal with strife as all my energy has been fighting the beast. So can we please move past this episode, and be friends and friendly toward each other, while still educating? I need both.
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NavyMom, thanks for writing your post and coming on to give us newbies support. I cant wait until more time has passed and I can have some perspective on this like you and many others do.
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Meadow I agree with you. I hold no malice towards Inspired at all and if someone said to me today they think they are going through a recurrence I would advise them to talk to her because she is a mind of information on the subject but I just cannot take so many posts on recurrence on a daily basis, some yes, but not all that amount. I sincerely hope you will be happy, positive and laugh as much as you can. That is what I try to do each day. I'm not saying those horrible feelings don't creep in because they do but its pushing them to the back of your mind that is the trick and the more you do it the better you become at it. All our feelings are tender after a diagnosis of breast cancer and we need positivity, laughter and total encouragement on here which is what I always had previously. Yep time to move on, good thinking.
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Cocker and Dolce I value the input of both of you. Being new to the arena I value the stats and the positive. I got my philosophy for living with this beast here and I treasure you both. You both have much to give.
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Cocker my heart just felt brighter thank you
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Daughter- I find myself second guessing everything. It's normal. This is a huge deal and there are so many options that it's hard to choose what to do. You could do everything right and it still come back. You just never know. For me I stick with what I know works. So far my chemo is working. My tumor is shrinking and breaking apart. My heart goes out to you and your family. HUGS!
Just finished round 3 of Taxol. I am more sleepy with this one. So far no numbness. My hair on my head still hasn't fallin out. BUT my armpit hair and some hair down there has! Looking forward to not shaving! Taking it one day at a time. My doc measured me on my first week and it measured 6x6. Last week it was 5x4!! The carbo. is working!! I left there feeling so helpful. I also got a package from a friend in Australia and turns out SHE had triple negative! She's been clean since 06. I couldn't believe it! Gives me so much hope!!
Hang tight Ladies! We can do it!!
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Last year, I wrote a post, that was publicly attacked on this forum. Those few who responded with criticism of my post, said that we should be allowed to write whatever we want. Ironically, my post at that time was about trying to write more positive posts. I believe that you, Cocker were one of the members stating we should be allowed to write what we want.
I would like to say, in the interest of trying to answer questions asked of me, I have to use the word recurrence, when the word is warranted. As a professional researcher, I can tell you it is unnatural to swap out the word recurrence in favor of another word, when the article is about recurrence risks. And recurrence risk does not have to mean something negative, it can be a positive message, especially when that risk is lower due to an item mentioned in the article.
In the interest of trying to understand and learn, I have gone through each and every post, and reflected back on what it was about, and why it was written. In doing so, I have come to the conclusion that this attitude Cocker, that you have towards me must be more of a personality clash between the two of us, because I have not been able to find a doom and gloom post, at all, by me. Every single one has been written with the focus on the positive side of the stats. In fact, it would be highly unnatural of me to not post something that provides a positive message in the setting in which it was asked. Example: If someone is fearful about chemo and asks "should I do chemo" and I reply back with "chemo can reduce recurrence risk 30%" that is in fact, a positive post. As a professional researcher, I am going to write in a technical way.
Here is a recap of my posts:
Apr 14 - Response to ongoing conversation about MX vs LX: Response included the word recurrence to provide data on local recurrence stats, which is a valid part of deciding on a MX vs LX
Apr 13 - Response to question asked of me again about chemo and risk %: Response very positive, chemo reduces risk
Apr 12 - Response to question about pCR: My response was that even without a pCR survival is achievable
Apr 11 - Post on aspirin - valuable info that was from the Fitness Forum
Apr 11 - Response to question asked of me about chemo: Response very positive
Apr 9 - General miscellaneous post
Apr 7 - Post on cancer anniversary dates - Very positive post - posted this info because often people ask on here what date to go by. I further referenced the exact trial where this info came from, and how it said we could use the dx date. This was extremely positive, means some people can choose to change from when they start counting and they can reach the goal of 5 years perhaps sooner than if they were counting from a different point, and since we all know the importance of the 5 year milestone, this was extremely important post
Apr 6 - Post on excerpt from article - Article was a Q&A on TNBC - this was extremely positive because it mentioned that many women at first are worried of their TNBC dx, but really it has a high survival rate. The Q&A was done to help medical professional alleviate the fear in newly diagnosed women, so the article had excellent positive qualities
I would like to also mention that I appreciate everyone who has written me, called me, posted about me and supported me.
I do totally agree with Meadow's last post. I will also no longer be partaking in any confrontations about any of my posts in the past, present or future. I will continue to post relevant, helpful data, and I will continue to post from a place of caring and nurturing, as I always have done in the past.
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slv58: We are of the same thinking....Being grateful. Even though I do not keep a written gratefulness journal, I have made it a daily habit of reminding myself that there are so many reasons to be grateful. And I have been much better about telling people that I am thankful that they are in my life. And sometimes it can be much simpler...like being thankful for rain or sunshine. Or seeing the scale read 2 lbs less this morning!
So tonight, I am feeling grateful for being able to be here and to enjoy a nice spring day.
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It's been over 2 years since my surgery and I don't think about recurrence. I know it's a possibility but until I have a reason to suspect that it is happening, I choose to believe that I am NED. I would like to advise the "newbies" to try to think positively - to believe that the surgery removed everything and the chemo and rads was just to ensure that nothing escaped! I know that there is so much you want to know and Inspired is truly a font of information but at times it is good to step away from the cold, hard facts and do a little "dancing". I think that is what Cocker was trying to say. While we need to answer your questions and share our experiences and knowledge with you to help you deal with your diagnosis, treatments, side effects and emotions, we also need to occasionally bring a bit of light and humour to you. Lately we have been missing this aspect. So, I would like to challenge each of you to either post a joke, share a funny story or, at the very least, tell us about something positive in your life. I hope no-one takes offence at anything any of us say on this site - we are all "sisters" who have been or are going through a life altering experience and we all need to be patient and understanding. So now I challenge you to add something positive here, ok? Here's my small contribution:
Let's face it - English is a crazy language. There is no egg in eggplant, nor ham in hamburger; neither apple nor pine in pineapple. English muffins weren't invented in England or French fries in France . Sweetmeats are candies while sweetbreads, which aren't sweet, are meat. We take English for granted. But if we explore its paradoxes, we find that quicksand can work slowly, boxing rings are square and a guinea pig is neither from Guinea nor is it a pig.
And why is it that writers write but fingers don't fing, grocers don't groce and hammers don't ham? If the plural of tooth is teeth, why isn't the plural of booth, beeth? One goose, 2 geese. So one moose, 2 meese? One index, 2 indices? Doesn't it seem crazy that you can make amends but not one amend? If you have a bunch of odds and ends and get rid of all but one of them, what do you call it?
Doreen
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Just a quick question, Dolce...what do you mean by "professional researcher"? In what area do you have expertise to do research? Do you have medical or healthcare training? Might give us an understanding of where you're coming from.
Nite all ~ Shar
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Dear DorMac,
You are a hoot! It is a pleasure meeting you! I can't think of anything funny to add, as it's late at night here, and I am pooped. But I certainly hope we can all continue to support each other.
Hugs, lilyrose53
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Jan and Slv...thank you very much for your kind words. Your suggestion about the journal is a great idea. And Jan thank you for sharing your feelings with me. I can so relate to how you felt.
Inspired...you are the absolute best and I appreciate you so much. You are so positive and I appreciate all the info that you give. While I am not a medical researcher like yourself, I am an assistant to physicians and grants administrator who do research on breast cancer and other modalities. Your knowledge is much appreciated by myself. Hope to keep in touch.
I am signing off the board for a while. I wish you ladies all the best health and that you keep dancing with NED for years to come!
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dolce thank you for ending this awkward moment so graciously
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