Calling all TNs
Comments
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Cocker- That is hilarious!
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LoveBonnie - Sorry you had to join us. I was like you. I thought triple negative was a good thing. Nope. The good news is that there is a lot of information and support here! You can say whatever is bothering you. We all understand. There are lots of women on here that have been through treatment and can answer questions. I just started my chemo ten days ago. The anticipation was worse than the actual infusion. Stay strong! Wishing you all the best.
To everyone - I wish you good days!
Hugs to all, lilyrose
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Allydp,
I am only 9 months out from my initial diagnosis and haven't finished rads yet, so I'm still somewhat of a newbie.
Even so, looking back at my time in chemo, I had some really nightmarish times mentally and can relate to your last paragraph about having some tough emotional times. It took me a while to figure things out while on chemo, but after many episodes of being on the floor uncontrollably sobbing, I realized that each episode was pretty much tied into when the steroids would wear off with each infusion. There is no doubt that getting a diagnosis of TNBC takes a lot of emotional adjustment, but part of the emotional lows that you are feeling just might be chemically induced.... either by the steroids they give you with each infusion or by some other medication. I was more than half way through chemo before I finally fessed up to my MO as to how bad those steroid crashes were for me. She immediately gave me ativan and another medication. After that, when the crashes would come, they were still horrible, but I could recognize the chemical component of them and counteract it with the medications and go to sleep. Usually, by the time I woke up, I was feeling better.
I learned from the Sept. 2014 chemo thread that I belong to that I wasn't the only one needing ativan and other help to get through those times. I'm not a big drug taker...before my diagnosis, I took no prescription meds and rarely even took an aspirin or tylenol. However, my husband and I both realized during chemo crashes that I really needed help. He was usually the one that would help me see that I was going down the rabbit hole to that dark place when the nightmare crashes would come. Going through chemo right after diagnosis is a special time. It does get better, but the SE's of chemo and all the drugs that go along with chemo can really make for a physical and emotional roller coaster.
I'm just writing about all this to let you know that you aren't alone by any stretch of the imagination in dealing with really dark times with this diagnosis and with chemo.
I feel like I'm done with the worst of dealing with an initial diagnosis of TNBC. I still get down occassionally when radiation fatigue has me wiped out, but NOTHING like those dark days of the steroid crashes from chemo. Surgery and rads have their own set of problems, but they are far easier than chemo as far as I'm concerned. It really does get better. Hang in there and seek help from your doctors if you feel you need it. There are things they can do to help you through this emotionally difficult time.
Hugs,
Kay
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well said Kay! Nice job putting it all in perspective. Yes, yes and yes to all of it!
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When do you consider your anniversary of being cancer free? Is from diagnosis date or surgery date?
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Hi Gram
I am told anniversary is date of diagnosis. My 5 year is in July this year. Keep your chins up ladies and wading through the muck of TN!!!
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Kay, thank you so very much for your thoughtful and kind reply. I read it with tears in my eyes. I feel like I'm losing it at times and it's nice to know I'm not the only one who has struggled. I think you might be on to something with the steroids. I have so many other negative SE's from them, but never correlated the mental crashes before. I was also like you, didn't take much of any pills before the dx other than thyroid medication. I've reluctantly started taking benadryl and ativan for sleep. I'd hate to have to take another ativan during the day, but I just might on those tough few days post chemo, since that is truly when I struggle. I know this isn't justified or realistic, but I'm so disappointed in myself for not being able to stay positive and keep a smile on my face. I just can't seem to control my thoughts at times. Out of nowhere, I'm 10 minutes into planning my funeral and I've got myself all worked up. I've never had this type of anxiety previously in life and it's upsetting that I can't seem to snap out of it some days. Again, thank you for such comforting perspective. Hugs.
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allydp, good news about the cyst being gone!
And I think the worries and emotional lows are par for the course. I can be doing very well but hear a bit of bad news or a concern and I'm right back standing at the edge of the abyss. And have slipped a time or two deeper in than I like. We all know that staying positive and feeling full of hope is where we need to be, but when the demon rears it's ugly head, (even if it's just mentally) it's so very hard not to fall apart.
There is no shame in taking medication to help you sleep since rest is so important, and if needed during waking hours to keep you calm if you need it. Time and living your life not thinking about this is the best healing balm of all.
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Gram: I asked my MO this question and she goes by DX date. Which felt right to me, because that is the date that the word cancer entered my my life and my fight began
For gals currently in treatment or just finishing, Hang in there and be nice to yourself. We have all spent time in the "dark place" I think its pretty normal to think of end of life issues. I did have a brief conversation with my adult son....just so he would know the basics of what I wanted in the end. I remember at one point, I was having trouble spending money....kept thinking I shouldn't do it. Well, I had been saving for a backyard swimming pool and put it off after BC dx....thoughts of why buy it when I wouldn't be around to enjoy it. And then one day I just said, what the hell. Why should I just leave the money for the next wife...So I went that day and picked out what I had been saving for. When it was all said and done, all those thoughts felt kinda crazy, but they were real to ME. So ladies, don't be too hard on yourself for having those bad feelings. But do remember to pat yourself on the back that you are doing everything you can to beat cancer. And find a little sliver of joy in each day. Its in there somewhere, I promise.
Have a great day.
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Navymom, I know exactly how you felt. My money dilemma was whether to buy a new car - why put out the money if I couldn't enjoy it for a period of time? Then, I thought , what the hell, I worked all my life saving for retirement, and damn it, I'm going to use some of my money!!! Now, I've swung the other way, and want to spend it all. Poor kids, there goes the college fund!!!
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Cocker you certainly made my day - that is hilarious!!
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thanks simple and ally.
simple: skin is 50 percent back to normal! rads was very very very easy.
ally: I see that your tumor is 2 cm yet not spread anywhere. I got a chemo friend in the hospital with the same diagnosis and the surgeon said that its rare to see a tumor as big as 2 cm but not spread..that means your cancer was a slow growing one..If you dont mind ,can u share your ki67 and SUV figures from Pet.
cocker: that was one hilarious pooh!! Never asked you, do you own a pet dog of the breed cocker spaniel?
For the ones newly diagnosed, I can very much relate to you.. not very long ago, I was in the same situation like you. As Simple, very rightly said..the worst is dealing with the initial diagnosis. Next comes deciding on a protocol, for me it was a huge decision what to opt first...chemo or surgery. Third will be chemo and the easiest will be surgery and rads!
The point is, once the initial shock goes away, once the questions like why cancer now when I have children to look after and bring up, why cancer when I had no risk to get it in the first place... once the acceptance comes, then dealing with the disease becomes much easier. Tell yourself that you are not the only one...countless men and women of all age groups have suffered from cancer, so many children have also gone through this cancer drill..this disease is at least 3000 years old. We somehow need to fight it out till a cure comes....try and be positive and leave the rest to destiny!
Hugs to everybody!!
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Ban- you are right, once everything comes together it is much easier to digest everything. These last 8 months have turned my life upside down, but I did it. Diagnosis, chemo, siurgery and now rads-almost done. I'm still here, I worked through chemo and took off for 4 weeks after my surgery. I still have recon surgery to do. The newbies will get through it, sometimes it is tough but you will do it. It just shows you how strong we are and can beat this! Good luck everyone, we will beat the beast!!!
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All of you ladies were the strength I found. xx
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Thank you so, so much, ladies. I feel much better after reading all of your replies and truly appreciate the support. It's nice to know I'm not alone in these feelings. I'm also glad to hear a few of you mention it gets easier with surgery and rads. I've been trying to research reconstruction which hasn't really helped the anxiety. My doctors acknowledge the increased risks rads has on recon, but they still recommend placing the tissue expanders at the time of BMX and doing the exchange after rads. Everything I read says this isn't the best approach, so I'm a little nervous about all that.
Ban - I'm embarrassed to say I don't know those stats. I've been too chicken to delve into my path report. I was afraid of seeing something that might spark further fears about recurrence. Your comment has given me some reassurance though. I do know that my tumor was 2.4 cm at the time of dx, but felt a smidge bigger by the time I started chemo almost a month later. My lymph node fine needle biopsy and sentinel node was negative, although my LVI was indeterminate. I'd been on a short course of steroids prior to dx for something unrelated that gave me swollen lymph nodes under my arms. My doctors feel that's why they couldn't get a clear negative on the LVI, but in reality nothing had spread. I sure hope you're right about it being slow growing. I will check out my path and get back to you.
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Cocker I love your quote! Hugs to Ally! All the decisions, ifs, when, and just information overload can get exhausting. It truly is a rollercoaster and not a fun one. It's great news they did not find lymph node involvement. Your grade 3 which most TNS are, is an aggressive rating in the range of levels 1-3.
The shock of diagnosis....all the questions and fears I remember well. I decided personally that instead of asking "why me - why now etc etc" that I would ask myself "why NOT ME". It really helped me through dark times. I thought maybe it HAS to be me! I might be the warning that saves another woman's life or even my daughter's by being an example of gettin checked out and watching for problems. Maybe I will be a survivor that brings hope to other family members with cancer including siblings children etc. Those feelings gave me more energy to turn myself around from dark dark days into being positive when I could.
Everyone goes through it so many different ways and no matter how you find peace none if it is wrong. Just remember that you are not alone.
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I was diagnosed on 1/14/2009 at age 49 with stage 2a tnbc grade 3 2.5cm tumor clean nodes. Had 4cycles of taxotere/Cytoxan after surgery and yes I hit my five year mark this year. Started with a unilateral mastectomy on left side however by the next year I was so scared I had the right breast removed. I have had reconstruction expander to implant left side, lat flap right side as my skin was just too thin. There is life after tnbc and yes it is scary. I have had many biopsies however all have come back good.
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Alicia, did you say that the steroids were to blame for the swollen lymph nodes? Sorry, just trying to clarify.
I've also been a chicken regarding reports and tests. I just try to follow what they tell me to do.
Itajik, congrats on your years under your belt!
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Hi Fierce!
About steroids, I actually learned that cortisone injections (which are maybe a different form of steroids) cause white blood cell counts to elevate. It happened so many times with me that I had to schedule out the shots to avoid messing with my numbers. It makes sense that it could cause lymph nodes to swell too.
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Itajik - Your stats are almost exactly like mine. What was the determining factors to you deciding to get a masectomy?
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Fierceblue - yes, my doctors suspect a course of oral steroids caused the lymph nodes under my arms to become swollen and tender. They explained that although they're supposed to suppress the immune system, sometimes they can have the opposite effect and cause an overreaction of sorts. I was on 16 mg methylprednisolone daily for a month as part of an infertility treatment. The timing of it all is very coincidental, so impossible to say for certain if it was the steroids or possibly the cancer invading, but my doctors have reassured me a number of times they believe it was the steroids. I was dx at the end of January and had taken the steroids all through October. My lymph nodes were swollen off and on from October through the beginning of January. To me, the fact that they eventually went down BEFORE I started chemo, tells me my doctors are probably right and the steroids were to blame. At least that's what I'm going with.
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Ally - my bs, ps, and RO all said do BMX/expander placement, then do the expansions, then rads, then exchange. That's what I did.
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Ok, thanks!
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This really tickled me. He's either snoozing or listening to the story. lol
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Cocker - Where do you find this funny stuff? I love this photo! My dogs think they are human and ALWAYS sit on the sofa! How are you doing?
Hugs, lilyrose
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That's right! Keep it up cocker! Sometimes going through this we forget to laugh ..Laughter truly is the best medicine!!!!!!!!
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Hello to all,
I have tried to be proactive & positive thinking. Been on a good overall diet. Avoided sugar. Now & then a slip (not often).
Yet last 2+ weeks have had increasing pain in back & joints. Worse at night. If I stay active it seemed to subside but sit for a bit & it's back. Long story short after discussion with MO I go for bone scan tomorrow. It is a long test as wait between contrast & test is 3 hours - with test being one hour. She & I are fairly certain it is something in my bones (cancer or arthritis). We just finding to what extent & what. We both know with my allergic reactions I am not a good candidate for chemo. With the added knowledge bone cancer is not cureable - I would pretty much be marking time if it is the cancer.
I asking for prayers that it is arthritis not cancer. This is the first time since surgery that I am truly concerned over a test.
The metastic bone cancer is what finally took my sister-in-law. It was painful for her to the end.
I am trying to stay positive but truly hard with the pain.
Please jump in my pocket. I need you all!
Best day is today with prayers for tomorrow!
Marsha
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Dear Marsha you are in my thoughts and prayers! Wow I hate cancer!! I am hoping it is arthritis and nothing else. Sending you good thoughts.
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Marsha,
We are definitely in your pocket! Praying that it is not cancer. Gentle {{HUGS}}.
Doreen
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Marsha, we are there for you! Count me in your pocket....I so hope it is "just" arthritis. I'll be thinking of you all day tomorrow. I hope you get your results tomorrow too. Waiting is terrible.
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