Calling all TNs
Comments
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Hello ladies, just dropping in to say hello. I still think of everyone that helped me with questions concerning my Mom a few yrs. ago. She's still doing great, aside from hip pain, which is caused from all the chemo. She just had an appt. with her Onc. on Wed. and all was well. Had my own little scare on Wed. after my mammo. I had a missed call from my sister, who works at the office where I get my mammograms done, and my Dr.'s office, just a few hrs. after my appointment. They saw a little something and needed additional images so I had to go in yesterday for another mammo and an ultrasound, thankfully it turned out to just be dense breast tissue. I hope everyone is doing well.
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LNBCA - thank you for dropping in with great news! I am so happy that you are both doing well. It is so helpful to hear from you that it is possible to get past this. I hope I come back here in a few years, but in the mean time I will do what I have to so that is possible. Have a sunny weekend!
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Hi everyone. My names is Kathi. I am 60 years old. I was diagnosed in early November but because of all the tests and the Holidays, I didn't have my surgery until January of this year. I had to wait again to start chemo until March. All the waiting was the worse! Thought I'd go out of my mind.
I have my 3rd of 4 treatments on Tuesday...I dread and at the same time look forward to it....at least I only have one more after it....but it seems I have different SE each time. Last time I had the worse neck pain on the right side for 9 days. I thought at first I had put it out of place but Tylenol nor aspirin helped...Then it just went away. It may have been from the Neulasta shot. I had been taking Claritin though. Didn't have much pain at all the first time.
I may have missed it but I haven't read that anyone here does the icing of the hands and feet during the Taxotere. I am sure hoping it is helping me as far as neuropathy and my nails go. I am diabetic also so really have to take precautions. I also use ice face masks to help with not losing my eyelashes and eyebrows.......so far, so good.
I am also wondering about the vitamin D. I was taking it before my diagnosis and was told by my MO to stop ALL vitamins before chemo. I will have to ask about it next visit.
I had very long hair and had it most of my life...I was hoping I wouldn't lose it but when it started falling out in handfuls, I asked my husband to shave it off. I cut the remains of my ponytail off first to save it :-). I am wondering if I should have shaved it though as I have numbs all over my head. Anyone else have this happen? I guess, I will know if it falls out again...
Heather, it will get better once you have a plan. Just put one foot in front of the other and definitely take it one day at a time.
Curly, I hope things went well for you.
Everyone...thanks for being here. It does help to hear from others in similar situations.
Well, I have rattled on but wanted to introduce myself. I will do my best to keep up with everyone but will have pretty bad brain fog after Tuesday. Writing becomes very difficult.
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Kathi, welcome to the group! I am glad you are tolerating chemo, hang in there. Thinking about your hair, I buzzed mine down with clippers, I did not use a razor, the nubbins were short and fell out on their own. I rather did like being bald, hope you are ok with it. My best to you
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Thanks Meadow. I do feel fortunate that I haven't had too bad of SE. I hope I can say the same after Tuesday. I am so anxious to have the treatments over with as I am sure is/was the case for everyone....
I am dealing with my lack of hair. I do wish I hadn't had my DH shave it down all the way. I have lots of scarves and a couple wigs. They are all so hot. I live in South Florida and it in the high 80's. I get home and rip off whatever I am wearing on my head and put a cold washcloth on my head for awhile LOL...
By the way, I always keep nail polish on my toenails but I don't on my fingernails...maybe I will be a good test for whether it helps or not?? I do ice too though....
Kathi
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Kathi: I live on the other coast: at least in Jupiter you get a nice breeze? Spent a lot of time therre for baseball for one of my sons.
Do you have the little cotton caps to wear under the wig? Lifesaver: but yes summer is definitely here.
Keep the faith, and check in when you can!
Kath
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Thanks Kath, I got one of those stocking looking caps with my wig but I just felt hotter :-/. I am getting a bit more used to the wig now. I go commando at home.
I was born on the west coast in St. Petersburg. Are you anywhere near there? Definitely Jupiter does have a nice sea breeze :-).
I started my steroids this morning...tomorrow is Chemo day. Hoping for an easy time....
Kathi
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DizzParkMom, just curious, did you have a recurrence or is the 2014 in your diagnosis date a typo?
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Sizzle=Good luck tomorrow! Wishing you minimal SE
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Thanks Eileen. I head out soon for it. At least it is early this morning. Except for extreme brain fog, I usually don't have any bad SE for a few days. :-). I am hoping for an easy time this time....ONLY ONE MORE AFTER THIS. Yippee
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SizzleStitch, thinking you today- hoping for minimal SE! Your almost at the finish line!
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I wish I had done the icing of both my hands and my feet, I'm over 2 years out from end of chemo and still have neuropathy in my feet that affects my balance greatly.
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I am done with my 3rd of 4 treatments and it went well so far. My WBC had been so steadily good that they are letting me skip the shot tomorrow which I believe is the cause of the severe neck pain I had last time. If for some reason my counts go low next week when I see the doctor, they will give me the smaller shots over a few days. I am still taking the Claritin anyway...just in case as it helps with my allergies anyway.
My biggest SE every time every treatment time so far is bad brain fog or more like jumble. I think it is both the steroids and the TC. It makes it very difficult for me to post or email friends and family. I can't get the words right a lot of the time and my iPad's spellcheck sometimes helps but most of he time messes it up worse. :-/. I have to read everything over and over.
Peggy, I am so sorry you have neuropothy. Is there nothing they can do? I thought I had read somewhere that some people regain feeling after a few years...??? Being diabetic, i am doing anything I can not to get it. I am so hoping the icing works.
Kathi
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ack...yes. 2014 was a typo. This is not a recurrence. Sorry about that. Heather
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I am now 60 yrs old, celebrated my birthday January . dx 2012 August. Lumpectomy left, 3 AC every two weeks, 3 Taxol every week, 15 rads. See Onc every 3 mths. GP every 6 mths. Still suffer from neuropothy. Worse during winter months, or when the temp drops. Family and friends still very supportive. Very thankful to be alive and be a part of this group. Prayers for all of us who are experiencing the after effects, now being diagnosed, awaiting treatment or going through treatment.
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Mk, thanks for sharing your story. I am so glad you still have great support, thats such a blessing. Thanks for your prayers
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Hi everyone
Hope it's ok to join your thread. I'm 48 I live in the UK and was diagnosed with TN Oct 2014. I have just completed 8 cycles of chemotherapy FEC D. I am booked in for surgery the beginning of May and decided to have immediate reconstruction with implant. I will be having radiotherapy after surgery and have been told there are risks involved with having implant before rads but told it can be replaced at a later stage if this does happen.
Interested to find others diagnosed with TN and the treatment they are having.
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Welcome Mkd55 andAmanda10, I'm sorry that you find yourself here but this is the most supportive thread filled with amazing women (and a few men) who are filled with knowledge and love. Feel safe to express all your feelings, good and bad!
Well I had my first chemo yesterday. Everything went well and other than a slight headache and some light headed feeling, I'm doing well. One thing has meconcerned, the results of my white blood count are at 4.2 prior to chemo. I had a baseline blood count last week and it was 4.5, so for some reason it seems to be going down. I just saw results online so didn't have a chance to ask my chemo nurse. It's actually the lowest it's ever been in the last 2 years. Hmmmm.
I'm still not thrilled with the choice of chemo. My DH and I discussed it with my MO, but she said that my case is unique and she discussed it with the whole tumour board and the general consensus was cisplatin and Gemcitabine. I told her that everything I've read says that regiment is for metastatic and she agreed but that there was research indicating that platinum chemos were good for TN. She also feels that the mx has gotten rid of everything. I asked if taxol could be added but she said I already had docetaxel and my cancer has shown to be resistant to it :-(. Just not feeling confident that a more gentle 'maintenance' chemo for stage 4 is going to rid me of this before it gets to stage 4.
I'm usually such an optimistic person and for some reason I just can't get my head there. I wish I had something to show me this isn't so grim. My MO told me 3 times (to the point of being slightly annoyed) that we are still going for a cure. Why am I feeling like this?
Thanks for letting me 'air'!
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slv58...when my wife was diagnosed,,,she was told that Adriamycin was part of the standard treatment protocol. BUT, since my wife had already had Adriamycin 17 years prior for Lymphoma, she couldn't have any more. That was by a MO here in Huntsville, AL. Given this fact, we decided that Vanberbilt in Nashville, TN would be the place to go for a second opinion. The doctor there agreed that she couldn't have more Adriamycin. Instead, she recommended Cisplatin, based on recent clinical and anecdotal evidence. The tumor board there agreed. The doctor there seemed to think that there was a chance that Cisplatin might even work BETTER, and if studies on Cisplatin continued to show the results they were showing, a day may come where Cisplatin REPLACES Adriamycin as the standard treatment. They are now, 2 years later, adding the platinum drugs like Cisplatin (and Carboplatin, which is similar) to the protocol in many cases. All of that said, don't count Cisplatin out as a potential "knock out punch" for this dreaded disease. It has shown PHENOMINAL promise in a few studies. It works especially well on patients with BRCA mutations (which include my wife). They gave it to my wife and she was only stage 1. Two years and counting later (knock wood) and all is well. Hoping and praying that Cisplatin is the silver bullet that rids you of this nasty cockroach of a disease once and for all! Keep the faith! God bless! (you may note that Carboplatin is listed as my wife's chemo. She never had Carboplatin, but Cisplatin is not a choice on this board under the various chemo's, so we picked the closest we could find.))
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shari
I ditto what Al said! I have read the same!
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Slv/Shari, You have been in my thoughts and prayers. I think AL Husband makes a really good point re the effectiveness of Cisplatin. But I think it is entirely normal that you are questioning the treatment, because you want to make absolutely certain it is the BEST one for you. Maybe I missed it, but have you sought a second opinion, just to reassure yourself?Greenae, I remember when you first posted following your diagnosis and now you are in treatment, and hopefully doing well. Good for you!
I had been trying to stay away from the threads a bit, but had a scare that caused me to just tell a few close friends and my family of course. I went for a follow up routine ultrasound as ordered by my breast surgeon last Friday. A very small 3mm cyst was discovered in the same right breast as the bc, but not near the LX. I had a core biopsy on Monday & found out yesterday that it was benign, just as the radiologist almost promised me when she did the biopsy. She said it did not look like cancer and it completely dissipated, implying that it was fluid filled after she took the second core sample. Of course you never know til the path report comes back OK.
We triple negs are always in some fear of it coming back in the first 3-5 years especially. But I had already resigned myself to going through chemo again less than a year after finishing the first 5 months in July 2014 if I had to. My heart aches for you Shari and any of our TN sisters who go through this again, but if I've learned anything from the remarkable ladies on this thread, it is that we are all, each and every one of us, so very strong. And we will do whatever it takes to reclaim our health.
(((((((Hugs to all)))))
Paula
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Thank you everyone once again! My internet was off all day so this is my first chance to read/reply. Al thank you for those reassuring words! I wish your wife continued good health and how wonderful that you are do supportive! I am trying to stay positive but I guess I'll just need some more time. Finding out about the recurrence so soon after to was hard but finding out it was this rare metaplastic has been even harder. As far as getting a second opinion Paula I am going to ask my mo when I see her next because I'm not sure how that works living in Canada. I was much more concerned with starting chemo quickly after surgery but it seemed to take forever waiting for final pathology and having it presented to the tumour board. Finally started 43 days after surgery. I didn't want to have to wait any longer, but I think I will see if I can get another opinion.
Paula I'm so happy to hear your concern was a cyst!
Everyone please be diligent in checking yourself! Learn ever lump and bump and if anything feels even a little different, get it checked and don't worry about being a nuisance- be your own advocate, TN can be sneaky.
Thank you for the great support, again, I love you all
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Thinking of you SLV
ALH thanks for your info, always learn from you
Hi to all
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Hello Amazing Women, Husbands and Partners, Children, Caretakers. .
I just had my surgery a week ago. Had post op but I don't know what stage, or about the tumor, course of treatment. I'm pretty sure from everything I've researched I'm Stage 1. Waiting to hear from Oncology/Radiology for next step.
I look through this Discussion board for any kind of information or support. I feel so fortunate that mine was caught early,and I really cannot express how much all of your posts are so informative, extremely supportive and just plain helpful.
I tried to go to our cancer center, for info,classes offered and to possibly join a support group, so to not dump on the people that we love and love us. Unfortunately, they only offer a support group for women under 40. Why can't it just be for cancer patients?
Anyway, I just want to say thank you for your posts, they are all so beautiful like all of you.
Hugs and Enjoy Your Weekend!!!
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SLV= My WBC count was 2.9 prior to chemo. My MO cancelled my chemo. It then jumped to 5.5. Then I started chemo and it just kept going down. I was always just hanging on enough to be able to get treatment. Afterwards, I stayed at 1.5. Then 4 months later (neupogen) every week it slowly went to 3.7. So,don't worry about your WBC. They will give you the dreaded neulasta or neupogen. I was told by MO not to worry.
Good luck with everything else.Hugs from me.
Welcome new comers. Sorry you are here but, a great place to be if you have joined this group.
I like you ALhusband.Great advise and information.
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Not sure if any of you have read this but it looks very positive for TNBC.
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Shelly,
I'm shocked that they only have a support group for under 40. I went to my first TNBC support group meeting yesterday and there was only one girl under 40 there. Actually most were over 50! It was a good meeting with ladies out of treatment for over 5 years. There is always that one person that makes the meeting all about her. I'm hoping that lady skips the next meeting or that the moderator gains more control of the situation.
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Meadow,eileenpg thank you.
Shelly, my daughter just moved across country to Vancouver and found the same thing as far as support groups but she's 31. I was happy to hear she is joining one as she's been having a hard time with my recurrence, being so far away doesn't help but at least there is somewhere she can go even though she doesn't have cancer- thankfully.
Annie, that research looks amazing, but there have been so many trials that seem promising but then either fail at phase 1 or take so long that maybe our grandchildren will benefit. We need it now! Even my MO said that she feels that metformin will not deliver what everyone is hoping for. I hope she's wrong.
Ninjamary how lucky to have a support group just for TN's! Were there a lot of women? I have to wonder at why most women were out of treatment for 5 years? I would hope that after making it that far out and subsequently getting past the danger time for recurrence you wouldn't need support, but maybe it's more about giving back? I truly hope I can get on with my life after that long!
I hope everyone has a great day. I'm going to rest and imagine my white blood cells mltiplying!
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Shari,
The women that were out 2-5+ years were awesome. I was so glad they were there. One mentioned that she enjoys these meetings and likes giving back to us new DX. She also talked about how everyday is special and the worries about every ache and pain. We discussed how hard it will be once treatment is over. Because during treatment we are doing something to kill those microscopic cells, we are doing something now. We don't have the option like the ER/PR/HER2 girls. We can't just take a pill for years. I was shocked at how many older women were there. All the internet reading is how TNBC targets the young and the minorities. We were mostly white older women with one African- American. That makes me feel better about all the dismal internet stories I read in the beginning on this journey/battle. I think there were about 15 of us in that one room. I'm also from one of the smallest states so it was a good showing. As long as the lady who tried to make the meeting all about her doesn't show up again it should be monthly thing I look forward too. This person hadn't even started chemo yet and was very ignorant of what lies ahead. She told a newly diagnosed (March) girl that she might not lose her hair with chemotherapy. She said this after/while everyone discussed how they dealt with their own hair loss.
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I hope the party pooper stays home! Misinformation from a newbie should have been curtailed/ corrected. I'm happy that you were able to find something like this especially for TN's! I guess that's why I keep coming here, it's the next best thing as I come from a very small town and driving far isn't an option. Enjoy and keep us informed if you find anything really inspiring!
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