Calling all TNs
Comments
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I wish it would silence my mind when its time to go to sleep!!
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Sugar you look beautiful. Thank you for running for all of our angels.
OBXK - any results yet. Thinking of you.
Kathy - bout time you showed up. Glad you had a good time at the casino and glad your mum is home.
Mags - no hypermetabolic is really good news.
I went to my oncologist appointment today and she examined me and everything was ok but then I expected that having only just finished treatment. Its later on that I worry about. No scans for me as she doesn't think they are good to have if you don't have any issues. She did say my diagnosis is on the better side of 50% so I spose that something. Got an appointment to see my breast surgeon on the 16th when we will discuss the port but I have decided to leave it in for a while just in case. Just not confident to have it removed yet. I hope all these negative feelings will go away soon because they are making me feel depressed. Also thinking of going back to work once I have seen the BS as its very quiet here without the old fellar.
Have a good day ladies. Lots of hugs. Annie
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Annie - glad your oncologist visit went well. Going back to work would be a big step - hope it can work out for you.
Kathy - so glad to hear from you, and glad your mom is home. We need to get together soon so I can see the new "svelte" you! After I get back from Hawaii... But three Dove bars, wow! I'm jealous!!!
Sugar - thank you for running and representing us!
Titan - casino time is "mindless action" for me, too. I won't even play table games because I don't want to make any decisions except which machine do I play next!
(((Inmate))) and (((Hope))) - sending warm thoughts for a comfortable week full of love and humor.
I have a busy week - grandkid watching on Wednesday, spending the night with my friend south of Boston on Thursday because I have a 9 a.m. appointment at Dana Farber on Friday (with CAT scan) to see if the clinical trial drug is kicking a$$. Then I'm going out with my daughter Friday night for karaoke with her friend (they like me even though I'm their moms' age) and spending the night. On Saturday we are taking younger daughter to Boston's North End for dinner and dessert, then on Sunday we leave for LA. By the time I get on that plane, I'm going to be a little bit tired!!! Sometime this week I do need to pack for 14 days and visit my mom. LOL!!!
Wishing everyone a good week.
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Annie,
The end of treatment was really scary for me, too. I went through a few months where it was hard to focus at work due to fears and thoughts about recurrence. I had even considered an antidepressant. I was given the 50% recurrence risk figure, too, due to the fact that I still had tumor and positive nodes following the first chemo. Even though I am on tamoxifen for the little bit of ER receptors, one of the triple negative specialists had said it probably won't make much difference (the other two oncs disagree) - but at any rate, I finished my last chemo in February following rads. I have finally started feeling better this last month. As you start to feel physically better, and the effects of rads and chemo start to leave you, it should help all around. I think working helps me cope, even though I complain about it! Sending you lots of love!
Luv, I love your new photo! I'm glad you are feeling so well with the chemo and I'm hoping for great results on your scan.
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Good morning all. It's been quite a while since I posted. I had to put BC behind me and just live. But, I'm back for a while, so...this is a long post. Sorry!
Two weeks ago I had my follow-up with my MO. She said everything was perfect. Woo Hoo. She wanted to put my into the Metformin clinical trial because she said that there is thinking that TN is metabolic. I just found out this morning that I'm not eligible...not sure why - there was a message on my work voice mail.
Last week I went to my PCP to get the results of some follow-up bloodwork. I had to ASK to have my vitamin D level checked. Turns out it's low - not horribly low, but low enough that I now have to take a supplement. And, the chemo that saved my life made me shrink an inch, so now I have to get a Dexa scan and take calcium. That wonderful chemo also gave me diabetes. While I was on it and being given steroids, my sugar levels went through the roof. I was put on Glucotrol, then, at my request, I was weened off of it. PCP said to get blood work done post 3 months. Yup...blood sugar still high. Crap. However, the "good" thing is that my PCP will put me on Metformin! So...I'm may not eligible for the clinical trial, but I can get it anyway. Do any of you have experience with Metformin? Do you think this is a good idea or should I just try to control my blood sugar with diet and exercise? According to my blood work report, anything over 6.5 is diabetic - mine was 7.2 - doc said not too high, but high enough to throw me into the diabetic category. If the Metformin will keep the beast from returning, I think I might want to go that route.
Saturday I went to the Living Beyond Breast Cancer conference in Philadelphia and met some wonderful women; one just recently diagosed with TN, and another who finished treatment a week after me, and another who has the same docs and went to the same radiation place -- we both had "Ed" the radiation tech who was awesome!
The first speaker was a doctor heavily into research. He was very technical but I was able to follow most of what he discussed. Lots of exciting research happening...one study in particular is a drug that gets injected into tumors and freezes them. Then your own immune system (T-cells, I think) attacks the dead cancer cells and gets rid of them. If this works, it could result in no more chemo for certain types of tumors!!
One of the workshops was specifically on TN. I didn't learn anything new, but the information presented reaffirmed a lot of what I already know. The 2nd workshop was for people recently out of treatment (I finished chemo April 26 and Rads on July 5.) and the side effects we may suffer....yup...got a few, but that's ok. I'm alive.
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Christina - thanks! That picture made me think how much I look like my mother...
I think it's the hair that got my attention. Mine was much straighter until I hit menopause. Then slowly but surely I got some curl. And now after chemo, I've got her hair. This picture is her high school grad picture. I wish I had her eyebrows!
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Char - I have been diabetic for 11 years and I take 2000 mg of metformin each day. The clinical trial dose is 850 mg twice a day. If I were in your shoes, I would be happy that my doc put me on metformin as there are many, many clinical trials and the early results are promising. So diet and exercise, AND metformin - the triple play for controling blood sugar and increasing your chances of not having a recurrence.
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Kathyrnn - I just wanted to say that during this horrible experience that we go through, no one should have an uncaring or unreliable MO of any of the doctors that are taking care of you. You deserve the most attentive MO/doctors, who doesn't make any mistakes, crosses all your T's and dots all your I's. I agree with your girlfriend, change your MO. I did change in the midst of chemo, and was extremely happy with my decision.
Maybe Titan is right that your metabolism is returning to normal, which it really does. I finally feel like my old person (except for thinning hair), after a very long time. Even though you have a great PCP, MO's think differently than PCP's, at least mine did. Also, my MO knew everything about me 100%. I used to write long notes to the nurse at the Oncology office, and it reached my MO.
Does anyone else do this? If you want to explain something and feel that you are unable to remember everything in front of the MO, then write down a nice long note, no matter how long, and fax to the office. I think what they did was they would read the note and still bill my insurance treating that as an office visit. You can suggest this to your Oncology office that you would like this option of communicating witht hem. This way they know all the details, as I had so many thousands of issues during and after treatments. The nurse once remarked "I love your thorough notes". And then at the end of the day she used to call me and address all the issues, calling for medications directly to the pharmacy, etc.
Hope everyone has a great day today, October 1st.
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Dawn, Inmate . . . thinking about you . . . and I agree with the others . . you are an inspiration to us . . . your fighting instinct and your love of life . . . truly a positive to us . . . that is no consolation to you, I'm sure . . . but you are helpful to us! (((((((inmate/dawn)))))))))
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Ladies on my way home from my first chemo AC treatment....so far so good! I'm a little woozy from the pre meds and I have a touch of a headache. But overall easier than I thought! I will keep everyone posted in my coming days!!
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Luv, You are both beautiful - and you do look a lot like her. My daughter has my mother's big blue eyes - sometimes her eyes look so much like my mom (who died in 1993) that it takes my breath away a little.
I'm trying to post a picture to cheer Annie up but I'm obviously technologically challenged.
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I too have to say that triple negative develops quickly.I had a routine mri last Aug/followed by an ultrasound 6 months later feb14th this year.They saw an area they needed to check,as they were always finding something in my mri's to the point I'd joke and say "see you for my ultrasound". what they saw this time was in the 8 oclock position, it was deamed to be another cyst. Went for my routine mammo at cancer clinic July 23rd. after mammo my oncol does a physical, she found a lump 1.8cm was what she estimated. She went to look at mammo and showed nothing SAME DAY!!this lump appeared in the 7 oclock.not the same one they saw in Feb..Drs are a bit troubled. The medical oncol says it wasn't the same one and that it haddened showed up on mri etc it took the core biopsy to see. So 5 months it developed. My surgeon says he saw some stuff on path report he feel better not seeing but he thinks it may have been the cyst seen in Feb. anyway I don't know.wonder what the dr saw that he wasn't impressed with but now I am so overwelmed I don't know if I can hear anything more.Its been a month since my bilatbx and chemo starts in 2 weeks
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5owens - glad everything went well. Keep going girl things will get easier now.
LUV - every photo you put up makes you look younger and younger. How do you do it. I am quite the reverse unfortunately. Hoping everything going good with your trial.
Lovelyface - I agree on writing everything down because once I get there I forget until I get back outside.
Christina - I always feel better when you post. You are so positive. Everything turns out ok when I hear from you. Sending hugs to you and all your animals.
Kathy - serves you right lol. Hope youv'e caught up with your sleep now. It's amazing the things mothers know that their kids are getting up to. My girls used to say "you really do have eyes in the back of your head mum" cause I always had a feeling about things!!. Bet your mum knows you go too. Also hope you won something to make it worthwhile.
Heaps of hugs for a brilliant day ladies. Annie
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Here we go - this is for you, Annie-0 -
Here we go - this is for you, Annie- 0 -
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LOL! Sorry for the double photos, but I don't know how to fix it! Annie, this is for you...
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Nice new avatar, Luv. And thanks for sharing the photo of your beautiful mother.
Well, ya got one under your belt. Make sure youhave your scarves, hats and a wig in the waiting. Sorry to say, but losing your hair is going to happen. I had my long hair cut into a short bob a week before chemo started. Then had my DH shave my head a day or two after it started falling out. Made me feel like I had control of something during such a crazy time.
Char, I asked my MO for Metformin. Was told NO. I then asked my PCP for it and he wanted a Hgb A1c and it was 6.5 and he gave it to me. I asked him for a script for 850 mg twice a day because that is what the study dose is. I started with 1/2 tablet in the morning. A month later added 1/2 tab at night. eventually kept increasing until i was at a full tablet in am and full tablet at night. Only problem I had was severe bloating and constipation. Once I changed my calcium gluconate to calcium citrate I was just fine. I have made a few small diet changes, too. I am at the gym 5 to 6 times a week and my last A1c was 5.5. Also had the bonus of losing 10 to 12 lbs since May.
Lovely, I have never written notes to my onc, but I do carry a notebook to every appointment that I keep my questions at the ready. But I do admit that DH goes with me to all my Onc appts and he helps me to remember what the answers are! Damn chemo brain.
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Christina arn't they just beautiful. Could just pick them right out of the picture for a cuddle. Mum's protective face makes me laugh. So utterly gorgeous. If I come back in another life I'm going to be a vet nurse then I can cuddle the animals all day.
Navymon 5-6 times a week gym work wow. The only exercise I get is to my fingers (typing). How is your gorgeous son lately. Have you been to see him.
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NavyMom - excellent results with the metformin and lifestyle changes!!!
Christina and Annie - thank you!
Annie - airbrushing those photos...LOL! Not really but I think that since I'm taking my own picture, I must be holding it just far enough away that you can't see my wrinkles
Triple negative cancers are definitely fast growers. I was all clear in December 2010 via mammogram and ultrasound (follow-up to first lumpectomy in July). By March 2011 I had a 4.6 cm lesion and at least 4 positive nodes. Frighteningly fast.
Kathy - how are you feeling?
5owens - glad you got #1 done. Be sure to keep drinking loads of fluids and take the Emend (hopefully they gave it to you). It's a miracle drug but not if it stays in the package.
I have a CAT scan on Friday. It should give a clue as to how the clinical trial drug is performing. It will have been just 5 weeks, though, so I'm not sure how much to reasonably expect.
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Sugar thank you so much for walking for our sweet angels!
Luv I LOVE the photo! You do look like your mother.
For the one (I'm sorry can't remember the name) that just found out that there is cancer after all the different scans. I am so sorry you are going through this again! My cancer did not show up on my mammo either. The day I got called into the office to be told I had cancer, I came home and in the mail had my certified letter saying mammo showed no signs of cancer! So I am not to confident in mammo's!
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Mine wasn't caught by mammo either in January, and then in July, I was diagnosed, just 6 months later. The January mammo was 100% clean, they didn't see anything. How can cancer grow in 6 months? My BS told me that it takes 5 years at least for a cancer to grow from point A to point B, when it finally shows up. this is exactly what she said. I am not sure what to believe. This is a fuc.....en sneaky piece of shit, and should leave us alone, it is like an evil entity, wish I could swear to it, until it leaves us the shit alone.
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Lovelyface I've tried the swearing and it doesn't work so I've given up with the swearing.
My cancer did show up on mammogram. They didn't see it at first but when they had a closer look they found it. Funny part was (if you could call it funny) it was so small on the x-ray they had to give me a magnifying glass to see it yet it turned out to be 3a, Grade 3. I had, had a mammogram two years previously so either they missed it that time or it grew sometime between the two years trouble is I would like to know just when it grew. I am due another mammo next month on the other breast so goodness knows what this one will show.
Kath have you found out your tumour markers yet.
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Morning to everyone.
5owens - I went through 6 AC. REST is everything. It does build up on you. I didn't not have many SE's, thankfully. I did struggle with woozy chemo head and low white blood counts. The worst for me was the metallic taste - made all food taste weird. The funniest - I do not eat chocolate or cake, do not have a sweet tooth. I actually craved chocolate cake and cream. Ate so much of it - even the thought of it now makes me feel ill. I also had a few glasses of red wine, when I couldn't relax.
So take care and pamper yourself.
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You've all heard of the Air Force's ultra-high- security, super-secret base in Nevada, known simply as "Area 51?"
Well, late one afternoon, the Air Force folks out at Area 51 were very surprised to see a Cessna landing at their "secret" base. They immediately impounded the aircraft and hauled the pilot into an interrogation room.
The pilot's story was that he took off from Vegas, got lost, and spotted the Base just as he was about to run out of fuel. The Air Force started a full FBI background check on the pilot and held him overnight during the investigation.
By the next day, they were finally convinced that the pilot really was lost and wasn't a spy. They gassed up his airplane, gave him a terrifying "you-did-not-see-a-base" briefing, complete with threats of spending the rest of his life in prison, told him Vegas was that-a-way on such-and-such a heading, and sent him on his way.
The next day, to the total disbelief of the Air Force, the same Cessna showed up again. Once again, the MP's surrounded the plane... only this time there were two people in the plane. The same pilot jumped out and said, "Do anything you want to me, but my wife is in the plane and you have to tell her where I was last night!"
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Dawn, your post was touching and all these beautiful words written are exactly how I feel. I especially want to echo Lovelyface's last sentence .... with God all things are possible. Lance Armstrong comes to mind. Diagnosed in 1996 with testicular cancer that had spread to his brain and lungs. He was given a very grim prognosis. Look how he is thriving now, 16 years later.
All of us women are here rallying you on, so keep your party dresses going and fluff up your cement pillows, because life is starting for you!
Sisters united.
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Luv: I'll add my voice to the chorus - your new avatar photo is beautiful. A picture of health which I hope your scans confirm.
5owens: Congrats on getting the first one done. Yes, drink loads of water and rest! Get out and go for a brisk walk when you feel like it. Let people spoil you.
My 2 tumours were not found on a mammo 10 months earlier - they weren't even evident on the diagnostic one that was done right after I found one of the lumps myself. Ultrasound did see them.
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Hello everyone,
There seems to be such a lot of wisdom among this group, so I hope you might be able to shed some light on the following or at least give me some guidance on the questions that I should be asking my oncologist.
While going in for some regular PICC line care today, I was asking the nurse some questions which caused her to pull out my file, and in the process I learned that although I tested negative for estrogen receptors, I tested quite strongly positive for progesterone receptors. The two tests were done at different times, and when the ER came back negative, I never actually asked about the PR result as I was told it was so highly unlikely to test positive.
I've spent some time today surfing the net to understand more about what this means, and it seems that less than 3% of BC is ER-/PR+. There doesn't seem to be much written about it at all, and there doesn't seem to be any firm agreement on whether ER-/PR+ people benefit from hormonal therapy. In fact, some articles seem to question whether this type actually exists and whether it's just an indicator of some error in the pathological testing.
I also found out that while my tumour was primarily IDC, there was also some ILC and ILC in situ present. I haven't even started to think about what this means, if anything at all.
I see the oncologist tomorrow, so of course I've started to write my list of questions for him, but if anyone knows anything about this, or can help me to make sure that I ask all the right questions, I'd be really grateful.
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I have a few questions for my onco. I wonder if any of you ladies have this problem or concern?
Yesterday I took out all of my path reports and began to read- All of them contridict the other? 1st Biopsy- states TN/ IDC stage 2b grade 2
2nd biopsy mri wire guided- TN/IDC stage 3a grade2
Sentinal node- TN/IDC node positive Stage 3 A grade 2
Lumpectomy- Patient history=idcis sentinal node negative stage3b grade2 Final Path- IDCIS 24 node resection negtive
It seems to me whoever typed the report screwed the final report up! I never noticed this until yesterday. How can cancer type change and why would my sentinal node info change?
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Annie - still waiting. I hope you adjust to your new normal soon!
English Rose - I hope you get the answers you need. It seems I remember reading of a drug that is available for PR+, that is not of use for PR-. Let us know what you find out.
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