Calling all TNs
Comments
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you know we were watching the news last night and we saw Jeniffer Griffin on Fox News
She had a 9 cm tumor triple negative , Stage 3.. and looked terrific .. healthy .. doing great!
She was diagnosed when she was nursing her last child abour 4-5 years ago !!
This is a beast .. and we must all fight it , until they find a cure .
I and my 3 sons will run the NY Marathon for a brast cancer organization and in this way show our support for my wife and all of YOU brave women !
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Allydp, did you ever have the blood transfusion? Or has anyone had one? I've been so tired the past few days, just when I walk or go up stairs. Sitting and laying down are fine. Had to take off work today, just getting ready in the morning exhuasted me. My numbers show I've been anemic for a while, but so far I havent been low enough to need a transfusion. I just spoke to the NP and she wants me to come in a day early this week for my bloodwork and to get cross matched if I need to get a transfusion on Friday. If it helps me feel better, I'm all for it, but wondering what it is like.
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Yay Mitty. Good to hear your news and great to see your smiling face again. This is great encouragement for all of us on here. Keep up the good work and keep on smiling.
Sipmple great news about your bike ride. I can imagine the exhilarating rush you got when you finally made it. Your strength will come back slowly but eventually you will get there. Keep on biking girl.
Ally hope your struggling and feeling crappy feeling is now better. Just like Simple you will get stronger as you go along. Try to do something for you every day that you enjoy. You will get there,
Sylvia good to hear from you again. Hope you are having a fabulous summer over there in the UK. Please keep in touch with us.
TasiaB I too have thinner hair now after treatment. Mine was never very thick but it did have a lot of wave in it. Now its straight as and I'm not keen on it at all. They say if you had thick hair before chemo then it will eventually come back like that so I hope yours will as well.
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Mitymuffin-I love hearing your kin of news! Yay for you! I hope to hear that one day.
Megomendy- I had a blood transfusion years ago after a very bad miscarriage. It was kinds weird, but I felt much better after. My MO tells me I am anemic but not enough for a transfusion yet. We are in a wait and see period.
Simple- nice to hear you are feeling stronger after rads! It feels like forever since I didn't feel tired all the time.
Wishing you all we'll, hugs, lilyrose
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Mitymuffin, yea!! What great news-hope your celebrating!
I'm going for my six month check up and mammo tomorrow. Hoping everything is good and a bit nervous as my breast is still sore. I'll pop an Advil before I guess!
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Simple - thank you so much for your kind words. I really appreciate the encouragement!
Mitty - congratulations!!
KSteve - have a fantastic time on your well deserved vacation! My husband and I celebrated our 10th anniversary last September by taking a cruise. It was the second real vacation we'd done since our honeymoon and it was absolutely wonderful. We vowed to never let another 10 years go by without a vacation again.
Megomendy - I did end up having the blood transfusion. My hemoglobin was down to 8.1 and causing me to be out of breath and extremely physically fatigued…I'm talking not being able to shower without sitting fatigued. It was crazy. The transfusion boosted my hemoglobin to 10, which is still low, but I'm no longer out of breath and, while still fatigued, it's not at the level it was. I'm back to doing light chores around the house which is saying a lot. The transfusion itself is nothing. I went to the same place I get chemo. I was asked to watch a short video detailing the procedure and the risks (which are very minimal these days). They then accessed my port, verified my name and birthdate, and started the drip. It's just like receiving IV fluids, except it's blood. I wasn't given any premeds, but I've heard some clinics give Benadryl to prevent a reaction. They drip it slow, so be prepared for about 4 hours or so. Hopefully they go ahead and give it to you so you can start feeling a bit better. Low counts are no fun. I'll be thinking of you.
Cocker - thanks so much. I'm doing a little better, but just feel like I'm in the thick of things, ya know. Like the shock of the diagnosis has worn off and the reality of chemo has settled in. I only have 4 more weeks left of chemo now, which helps to see the light at the end of the tunnel!
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Thank you cocker for responding
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Tasia, I just saw your post and I know my hair is thinner on top .I am keeping it short for now till it catches up, I am staying positive that it will! Thanks for posting.
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Hi ladies! Don't think I've introduced myself in this thread, yet. I was diagnosed last week with TN Stage IIIB at the ripe old age of 36. I had my port placed Friday, have had several other tests, PET, Echo, etc this week and I start my first round of dose dense AC, followed by Taxol, on Thursday.
Mitty, your post above gives me hope!
I'm just starting down this road and I'm so glad to hear the positive stories, since the ones usually associated with TN are usually grim. 0 -
Congrats Mity!! What a wonderful feeling that must be! I just had a 6 month checkup with my BS and she still wants to do every 6 month. I see the MO early July and I will be curious to see if he lets me go or changes the usual 6 month checkups any. I will be 4 years in August.
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Kimmy, I'm curious as to why you had a PET scan, I too am TN stage 2b but I've never had a PET! Kind of makes me nervous that I haven't!
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Allydp, thanks for the info on yr transfusion. That's what I wanted to hear. Today I got up for work, showered, and got right back into bed. Mine is about 8.something.
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Nettie- I didn't have one either despite my MO wanting me to have one just by being TN- my insurance wouldn't approve it. My MO fought with them, but they still refused. I always wish I had had one too!
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So I saw my oncologist today. Apparently my HER2 status is equivocal on my pathology report so is awaiting FISH testing.
I still will receive A/C & T. After I'm done A/C they may add in Herceptin if I'm HER2 positive.
We talked a lot about dose dense vs. regular protocol every 3 weeks and she was against dose dense. She does say the research supports dose dense and doesn't deny it but clinically dose dense isn't great. Greater risk of heart issues and risk of leukaemia. She also said that the other oncologists in the clinic feel the same way. She mentioned that a top BC oncologist also recommends regular A/C/T.
She said if she were me she would not so dose dense. I chose not to do it. Now after the fact I am worried I didn't make the right choice.
My friend works in the chemo room and has seen many ladies start on dose dense and not be able to tolerate it so end going on the regular protocol anyways. I'm hoping that the regular protocol will allow me to feel well enough to eat right and exercise.
start this week...
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Nettie - sorry to cause confusion. Apparently my fingers typed too fast and my eyes didn't catch the mistake. I'm not IIB, I'm IIIB. I just edited my post to reflect that.
As far as testing goes, the PET scan was a breeze. I've started to feel like a human pin cushion over the last 5 days (it took FOUR tries in different places to get my IV in for the port). But I didn't even feel the needle stick for the glucose check and dye today. I told that tech I wanted her to follow me to all my future treatments that involved needles. LOL. Fingers crossed it comes back clean. I've had some back pain that I've noticed more in the last few weeks. I've had a bit of back pain off and on for years, so I'm hoping it's just regular old normal for me back pain, and not something else to worry about.
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Kimmy, New I I'm more confused..what makes you 3b? My tumor was 5cm but clear margins and clear sentinel node.
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Nettie - going to have to get a little wordy here, sorry!
After my biopsy, the tumor area started showing a slight redness and a bit of edema I was already experiencing increased a tad. The diagnostic radiologist commented on the edema in his report and said it might possibly be inflammatory carcinoma or secondary to the enlarged axilla lymph nodes that were observed at my ultrasound.
When I met with my onc last week he did a clinical exam and said that since I have a bit of redness, edema, and the slightest peu d'orange (only noticeable to me in one tiny section when the right boob gets cold), that he would classify it as IBC.
I met with a surgeon less than 2 hours later, and when I asked him point blank was it IDC or IBC, he said that he wouldn't call it IBC, but IDC with skin involvement. But that it really was just semantics. My skin is starting to show a bit of reaction from my tumor, and the protocol that we had planned for treatment is no different from IBC and IDC, thanks to my TN status, young age, aggressiveness of tumor, etc. Neither one felt it was necessary to put me through a punch biopsy to make it official, when neoadjuvant chemo is the standard protocol when dealing with 3B.
Thanks to lurking here for weeks waiting on results, I had a tentative treatment plan in my head. Neo chemo, lumpectomy, then rads. But because of the skin involvement, both of them squashed my hopes of having a lumpectomy.
Actually both docs are recommending a BMX, again due to my age, aggressiveness, etc. I know it's not the end of the world, but that's been my biggest hurdle so far. Even though my right boob wants to kill me, I was hoping for a good enough response through chemo, that I would've been able to save it. 0 -
Wife's Onc has announced he's leaving the practice to move out of state to teach in a Medical School! Back to the drawing board finding another good one.
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ALHusband, that's tough right in the middle of treatment. Is there anyone else in the practice you can use?
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They compared the 2012 vs 2014 scan and the L4 lumbar area that "lit up" appears to be a none issue. It was there in 2012 and has not grown. They indicated it might be prior damage (scaring) and/or bone shadowing. The bone shadowing part i didn't understand. So that's the update. Let the good times roll
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Thanks for explaining Kimmy!
Congrats Jenjen!
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Megomendy there are several in the same practice. But, just because they're in the practice doesn't always mean they're good. It's just the "sifting" to find a good one that's tough. Even the departing doc went so far as to say, "There are some in this building I wouldn't refer my patients to." I'm just glad that if this had to happen, it happened during "surveillance" rather than in the middle of "active" treatment. I think that would have been tougher.
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Hello Mitymufin,
I am just popping in to say that I am very well and life is fine over here in the UK. On Friday June 20th it will be nine years exactly since I was diagnosed with breast cancer. Cancer with triple negative receptors was really in the dark ages at that time and at the hospital nobody called it this. I was just told the prognosis was not good because my breast cancer was not hormonal and tamoxifen etc. was no good for me. I did all my research on my own. At the time I thought I was going to die. Here I am nine years later!
I think we still have a long way to go in dealing with breast cancer in the UK. I read this week that of the 50,000 women diagnosed with breast cancer a year, 12,000 die from it. That is way too many.
Thinking of you and wishing you all the very best.
Sylvia xxx
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Hello Cocker_Spaniel,
Thank you for thinking of me. I always read your posts on this thread and I do love and appreciate some of the profound statements that you post, not to mention some of the many artistic illustrations that you post. I do hope all is well with you. How is life in New Zealand?
Keep well, fond thoughts.
Sylvia xxxx
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Jenjen my wife had a tiny spot "light up" in her arm. Doc said the same thing that he's reasonably sure it's nothing and cited frequent false positives. Radiologist concurred on the "it's nothing". Doc says something as benign as inflammation from working out at the gym can sometimes cause a spot to "light up".
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Good to know ALHusband, thanks for sharing. I am so relieved today...almost giddy.
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Jenjen - woohoo, wonderful news!!!
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Yeah Mitty!
Kimmy if you're not there already come join us in the June 2014 chemo thread. I think I saw you there but I could be wrong. I started my AC yesterday and had my Neulasta today. So far so good.
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I'm guessing losing our hair is almost always a definate occurrence? I looked today at a halo which was kind of like a headband with hair and then you wear a scarf or hat. I guess my question would be, what did you guys do? Did you buy a wig, or the halo, or just go with your scarves and hats? I'm guessing my chemo will start mid to late august.
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I bought a few different halos but I'll mostly do hats and scarves. Most people I know know I have bc I just want to protect my head! I didn't get a full wig. It's summer and I hate to sweat!
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