Calling all TNs
Comments
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hi SimpleLife3Real -
Chemo is hard going - you might be coping ok physically but there are emotional side effects too - just not documented like the physical ones are. Just know you are doing AMAZINGLY! And sometimes a good cry is just what you need - a spiritual clearance so to speak! Don't beat yourself up at all. Tell yourself how brave and strong and wonderful you are and look for some good things to focus on.
Don't let yourself dwell on anything negative and though we don't know what the future holds - we do still have one. Remember that! Every day is a precious day.
I heard the saddest news the other day. A friend of a friend had died suddenly in the shower. She was 29 - pregnant with her third child and just 6 days away from due date. Medics were unable to save the baby either. So her poor shell shocked hubby was left grieving for her and the baby - and now left to parent 3 & 5 yo boys without her.
Makes you appreciate that life is so uncertain at the best of times. We just have to make the rest of our lives the best of our lives and get on with living! My 19 yo daughter started complaining to me that she was worried she would get bc too now that both her mother and grandmother have had it! I told her in the kindest voice possible that if she were to get it - it was likely still 25 years away - and there was a lot of living to be done before then. Also treatment then would most likely have improved again over now as it has since when my Mum was diagnosed. I also told her - and I strongly believe this - there are worse things that can happen to you than breast cancer!
Take care of yourself Simple Life and best wishes for the rest of your treatments.0 -
Thanks Kruise. I'm so sorry to hear about your friend. What a shock....it was helpful that you shared it to help me put things in context. I appreciate your kind words.0 -
Simplelife..I hear ya...the couple of days after chemo aren't fun at all..especially if you are used to feeling good...and then you just cant..work, go out, clean, walk,,,whatever you are used to doing..just take a deep breath, sleep and take care of yourself during those bad days...once you feel better you can pretty much be normal..at least until the next dang chemo comes around. I always felt bad on Fridays which ticked me off because that is my FUN night...sounds like you are more than 1/2 way through....6 more? You can do it girl...not sure what surgery you had but I had a lumpectomy and recovery time was like 2 days....I thought that chemo was much harder than surgery was.....everyone is different but for me taxol was worse than AC...aching joints, all over body pain..plus it took so much longer to infuse!
Hang in there..and don't believe everything you read on the internet about tnbc...there are alot of us still here several years out from diagnosis and still doing very well...0 -
Simplelife- Kruise and Titan are so right. Some days are just tough, no matter how upbeat you are. Are they giving you steroids? I always had a crash day or more after the steroids would wear off. It sounds perfect that you go to bed or veg when feeling like that, you need your rest. It will get better. I was like Titan, I did way better on AC than on taxol, so maybe you will too and you are getting the worst part over first.
Titan and Cocker-Thank you, I always feel a bit embarrassed after I go on one of my rants! It is strange nobody told me this stuff though. I had a muga scan of my heart before every ac treatment and I had one before my bmx and everyone said my heart was fine, they also did many ekg's and I had a stress test when I was done with treatment. Nothing ever mentioned. I forgot about all those tests I had. I am pretty sure the stress test was after the xray that says I have an enlarged heart. I will probably call my primary doc and have her refer me to a cardiologist. Do you think that is the right doc? My MO is just so busy, she took on a lot of my retired doc's patients and she was already busy before and she does not work a full schedule.
On a positive note, we got together with my brother and sisters, niece and great niece for my great niece and my birthday (early for my bday) and we had a great time. My niece got engaged this week and seems so happy and I really like her fiancé! I got my great niece, who is ten a really cute charm bracelet and my hubby got me a matching one! She was so excited! My niece has the best kids ever! Unfortunately my 12 year old great nephew couldn't make it, he was in a basketball tourney that lasted longer than expected. I just love those kids, I never had children and I just feel so fortunate to have them in my life!0 -
Kruise-So sorry about your friend. You are so right, as bad as breast cancer is, there are much worse things that can happen in life, she and her baby didn't even have a chance. Just so sad. And how do you explain that to the little ones?
Perfect answer you gave your daughter, I hope she is able to put her worries aside as she watches you thrive.
I was first diagnosed in 2002 stage 2b, so it has been 11 years for that cancer not coming back (the one in 2011 was a new one). There are many of us that have continued on:) And I hope my situation doesn't scare anyone, getting cancer a second time. The second time I had a complete pathologic response. It has left me a bit worn out, but I am glad to be here.0 -
Tomorrow is mammo time on righty. 11am. Nerves are gradually creeping in. It is only next door to our surgery so not far to go and they have an experienced radiologist who can tell me straight away if he see's anything. Nice to know not long to wait for a change.
BAK don't ever be embarrassed. My God if anyone rants on here its me. It makes my day to see your posts. This is what we are here for as you are for us. I think my Doc would refer me to a cardiologist but Titan might be able to answer you better as I am not in your country and don't know your system.
Glad you had a great time with your family. So sorry you never had children of your own but its also nice you can give them back when you need to and sometimes when my girls were small I would like to have given mine back at times!!!. Also your beautiful dog on your avatar can make up for children. He/she is gorgeous.
That is amazing and very encouraging that you went for 11 years before a recurrence. Now you will go on for another 11 years (or more). I think that will give us girls a boost on here more than anything else so thank you for that.
Kruise everything you say is spot on but that was a terrible thing to happen to your friends friend. You just never know. Live for today and take joy out of every little thing like BAK's 11 years.
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BAK - I am glad you agree with me (even after your two diagnoses) that there are worse things in life than bc. It's like that old saying too 'there are always people better off and worse off than yourself'. I am presuming that they will do an autopsy on Kirsty so will be 'interesting' to know what happened. You'd think if it was something related to the pregnancy like toxemia etc it would have been picked up earlier - so perhaps it was an aneurysm. I often think that sudden death is good for the person but bad for others around them, and illness/sickness is bad for the person but good for others around them. I always knew I'd probably pick the later if I could as I am never worried about me, but about others :-) but who knows what exactly is around the corner.
Cocker-Spaniel - yes we do need to live for the moment and appreciate the NOW and of course look for the beauty and good things in life. Life is a gift and often we don't really appreciate this.
Well maybe 'WE' do now but in general people don't.
Let's be grateful for all those little things and big things in our lives. Xx0 -
Kruise, I am so sorry to hear about your friend. That is a horrible shock.
Bak, It's good to see you here. I'm not on here much lately, but stop in and read every now and then.
Simplelife, you are really close to me! I am in Chattanooga. I was originally diagnosed triple negative but after my neoadjuvant chemo they found a low level of ER receptors so I take tamoxifen. I was stage 2b also and didn't have a good response to the neoadjuvant chemo, but I am still here, almost 3 years post diagnosis. Hang in there. Like BAK said, the steroids cause a crash a couple days afterward. I had to constantly remind myself that my perspective was gloomier than normal those few days because of chemical disruption within my body.0 -
It's great to "meet" you Christina. I'm delighted to see you are 3 years out with a diagnosis similar to mine.
Kay0 -
Hi to all,
For my update since my appt this morning with my MO. No direct felt lumps or pain symptoms but PET scan is scheduled as my low B12 levels & continued weight loss the reason. So now I wait until the 20th for the scan then get appt the following Monday for results. Can't have CT scan as not able to take the iodine contrast meds. All my allergies do make it difficult to get some tests done.
My MO wants me to add the the cancer antigen test to my blood work from now on. CA 27.29
This is added to my current cancer antigen tests of:
CEA
CA 15-3
CA 125
Do any if you get any different tests done?
She also wants my thyroid checked. So now for my next hurdles.
Take care all I trying to keep it together.
Marsha0 -
Lookingforward, I hope they can figure out quickly what is going on. Nov. 20 seems like a long way away when waiting for a test. It makes sense she wants to check your thyroid. It can cause weight loss.0 -
Hi, I was going to respond to some of the new posts but other people already said what I would have. TNBC is crap but it's not the worst crap. Still, we live inside our own bodies and minds so thoughts of others' tragedies over time fade and we must deal with our current situation--be it chemo SEs, surgery recovery, fear of recurrence.
I am going for my overdo 3 month check up with a new oncologist (I did my 3 month check up with my BS and was considered "fine".) I am switching oncs because I never liked my first one's personality but he knew what he was doing medically and I needed to get on with treatment. But when I kept putting off my 3 month post treatment check up with him I knew it was time to change docs.
I technically finished all treatment April 9, 2013 with my mastectomy and reconstruction. I used to post on this board regularly but have recently been posting on a topic on the Life After Cancer forum dealing with the emotional fallout that can occur post treatment.
Heavens knows that during treatment we had so much physical stuff to deal with there just had to be times when we put some emotions on the shelf labelled "to deal with later". For me later is now. And I feel myself getting anxious about tomorrow's appointment with the new onc. Just a simple reminder that I'm not out of the woods yet. A lot of us TNBCs are aware that the 1st three years post treatment are our most vulnerable years re recurrence. Our fight against this involves diet and exercise and self-care including keeping our follow up appointments. So, although I've been lax about the diet and exercise the last few weeks that I've had a sinus infection, I am at least taking action with my follow up tomorrow.
For those going through chemo right now, realize that soon chemo will seem like a distant memory, distinct but over with. It has a finite ending to look forward to! It is important to keep that in mind when going through the worst of it. Soon you will be done with chemo!
Hugs,
Peggy0 -
Anyone near NY?0 -
Nice post Peggy....I think your post will help several on here....reading on the internet about tncb you would think you were dying...every time I freaked out about it with my onc...he would just look at me like I was crazy.......my onc and BS never ever gave me a ending date..never ever...they say..you are doing well..see you in 6 months..they were/are the calm ones....
I guess you just have to listen to your doctors...I do...but realize they aren't going to tell me about the green tea, supplements, foods to eat and exercise..I have learned this from here....we do have to be our own advocates...and learn from others experiences...from surgery, to chemo, to rads, to learning how to survive and live after treatment is done...0 -
Hi all,
My MO office called & moved up my PET scan for Thursday morning. Less time to stress. So tomorrow morning I have to go get blood work done. Trying to clear my head I went to yoga this morning & did pretty good. Great workout.
Keep on ladies & AL H.
Marsha0 -
I've come so far since this photo! It was taken after 5 months of chemo and my body was so tired. But I wanted to celebrate because it was the end of that treatment. I felt the same way yesterday when I got my CT scan results!!
Went to my MO yesterday and I passed my CT with flying colors. (My sweet hubby said I studied hard, he keeps things lighthearted) Yea for me and No Evidence of Disease!!!! NED ~ just found out what that meant and happy to use it! All these terms throw me for a loop.
If you go by DX date, I am a 1 yr and 9 mo's survivor!! My chest wall node and lung nodes have not grown so she is thinking they are benign. WHOOP!!
Anyway told her all about my plans to go "flat" before the end of the year (deductible is met) and as I talked her face started making all sorts of frowns and furrows. As I ended my speech she put on a smile and gently reminded me I didn't have to make such a big decision in a short amount of time. Then went over all the reasons mentally for reconstruction. She said I was young at 57 to go rest of my life without breasts. (I thanked her because I thought 57 wasn't all that young actually) Then stated nicely that my body type was like hers and with a concave chest it could look like a man with a rounded belly...and would I really be happy. I was thinking in my mind I would be flat all the way down after I lost some weight but actually my rib cage is slightly bigger on one side than the other and it's not fat.
Pooh on reality! Truth is I weigh more than I ever have and just between us I am not in marathon shape. But I can hope for energy and weight loss and a new body can't I? ...be flat and small and cute in a t-shirt.
So, hubby and I are going to ponder and visit more with those that have had mastectomies and stayed flat as well as visit with DIEP and LAT flaps. I'm going to see my BS and PS, talk with them again after the first of the year. Hubby doesn't want me to feel rushed and make a decision just because of ded and the holidays. I am fine with that.
So, I am taking a break from doctors (until January 2014) and celebrating my good report and going to dance all day today as I go about living!!
xoxo, gwenie
ps ~ I posted some of this on another forum I visit about being flat chested.0 -
Gwenie, I'm so happy for you and to hear about your results....Dance all day (and night too if you feel like it).
Lookingforward, I'm keeping my fingers and toes all crossed for you. I'm glad they moved up the PET scan date because waiting for test results is so hard.
Thank you for the comments about how chemo will be a distant memory. I know it will. My tumor is shrinking each week with the chemo, so I have that to feel good about too. Today, I go for taxol infusion #11. Just one more taxol infusion after that and then I get a three week break before the AC starts. I'm getting a little nervous about the neuropathy that is developing. It's still in the easily tolerable range, but increased quite a bit this past week....I can deal with it, and I always report what is going on each week to the doctor or nurse, but I'm just hoping it will go away after the taxol treatments end. I guess I will know that pretty soon.
I hope you all have a great day/night (depending on when you read this!)0 -
Gwenie fantastic photo, you look so happy. Dancing with you. Yep take your time and then decide what you would rather do. Your hubby is right its a big decision and you will have lots of time to make the right one for you. 57 now is young you have lots of years ahead of you yet so enjoy them.
Simplelife so glad to hear your tumour is shrinking. Great news. I had neuropathy in my fingers with taxol but its gradually getting better and hopefully yours will too.
Lookingforw good news about you scan being moved forward. Less time to stress. Keep us posted.
Yep google is a real downer for us and its better not to go on there, but easier said than done. I thought I had only about a month to live when I googled BC but I'm still around. So much of it is out of date. I learn't a lot from the ladies on this site that my oncologist and BS didn't tell me. I guess they just don't think about the little things that make such a difference to us. some of the things the ladies said gave me the hebegeebies at times but I needed to hear them so I was prepared for what was to come. They also gave me many tips that helped me enormously throughout my treatment so to me they were a godsend and I appreciated their advice. Without them I would have been lost and so afraid but they helped me all the way through.
Have a good day ladies. It's sunny but windy here in NZ but still a great day.0 -
Yea!! Test done. Now just wait for results.....next Wednesday. For some reason I feel calm. Not stressing now anyway. Sylvester in Miami is great. Friendly, outgoing, & on time. Much better than my first PET. Didn't even feel needle or injection. Took my disc of first PET for them to compare too. They uploaded it & report into their system & gave me back my info. Keeping good thoughts.
Will let you all know results.
Have a great day everyone.
Marsha0 -
Hi all, Nice to see posts from everyone. I went for my pre-op yesterday, blood levels fine, slight high blood pressure (currently being treated), ekg fine. Surgery (free flap) and mastectomy (again) on December 2nd. I'm a bit apprehensive, I know this surgery is harder to recover from than my previous surgery. I can deal with the pain, I only hope i don't get cording (axillary webbing) again.
I'm on a break from Xeloda , still recovering from HFS. It scares me to know I'll be off meds for 4 weeks before surgery. My tumors were so fast growing, I can't help to think that they will grow while off chemo, even though I need to be off them for atleast 3 weeks before surgery.
Kathy, thank you for your post about the "crap shoot". All we should do is to look at this day and make the best possible choice we can with the info we have TODAY. I think no matter what we choose, we all could at one point or another look back and say "what if". But as we all know, that doesn't change where we are at today, so let it go .
Alhusband, why were you asking about NY? I'm a little north of Philadelphia, 50 minutes south of NYC. Do you need info about something?
BTW, we got a new vehicle - a Subaru Tribeca. Now to get DD to get her drivers permit. I may need a tranquilizer!!!!0 -
One week until my surgery and I'm looking forward to it because it means step #2 (with chemo being 1 and radiation being #3) will be out of the way It's the small things, right?
My hair is growing in and the neuropathy is still there but the worst thing I'm experiencing now is the hot flashes (particularly at night with the night sweats) which have increased in intensity over the last week or two. Oy! I go to bed with one of those cooling towels (the chamois-style you get wet and stays cool for hours) as it's the only thing that remotely works. Please tell me these decrease soon!!!
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Well ladies. The Surgeon's office called today with lab results after my wife's oophorectomy/hysterectomy. ALL CLEAR! Thank God. Onward goes the crazy train! Next stop...exchange surgery. Gotta love those all clears and I pray every day that everything stays clear...not only for my warrior wife Kathy...but for all of you amazing warriors!0 -
Aero, Good luck with your surgery....I'm a couple months behind you on a similar plan. I've got one more week of taxol to go, then AC then surgery around Valentine's Day. I'm glad to hear your hair is growing in. Every little bit helps!
SlowLoris, your surgery is coming up soon! I'm recently diagnosed and still very much on a learning curve about TNBC. I had no idea it was possible to have a mastectomy twice. I'm guessing they will be taking out more tissue and possibly muscle this time.
I'm sorry you are having to go through all this. I'm sending positive thoughts your way. Did you ask for tranquilizers to help with the driving lessons? I remember my youngest son scared the daylights out of me as he was learning to drive. We ended up paying for lots of drivers training lessons for him because he scared my husband so badly too. He's 35 and has never been in an accident, so I guess those lessons were worth every penny!0 -
slow...Dec 2 is my dad's birthday so I know everything will be fine..he will be 81.
Saw my BS today..everything is fine...wow..does he do a great breast exam...after that I KNOW that there is nothing to be concerned about...my onc's assistant doesn't do a good breast exam at all...if it weren't for my BS I would be concerned..now I am not..
Still have to see him and the onc in 6 months..which will be after my 5 years out....would like to hear see you in a year...i think.....you know you want to be followed...but then again..it would be nice to hear..see you in a year..ah well0 -
Anybody heard from InspiredbyDolce? Its been a while since she has posted.....0 -
Titan: My BS is exactly the same - very thorough breast exam, the onc or onc assistant not so much.
Slow: My BS said exactly that when I was trying to make surgical choices. All you can do is make the best decision with the information you have on hand at the time.0 -
I'm in NY Alhusband, Orange County!!0 -
ALHusband - great news! Congrats to you and your wife. Keep the positive news coming!0 -
Today started with a papsmear and ended at the breast imaging center (start to finish took 2 hours...happy with the speed). Turned out to be fat necrosis, which is a painful in my case - right on the rib. I was so so so scared. Tonight I drank a delicious chocolate milkshake and I feel better
Congrats Titan!
Yay to ALHusband. You guys are moving through the process now. Happy for you.0 -
Alhusband, congratulations to you and your wife!0
