Calling all TNs
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hello...
am back ( again )!! after days of chasing the weird problems which had come up...dizziness, palpitations, breathlessness etc the diagnosis finally arrives. Its not vertigo. Rather its a cardiac problem which has coincidently come up after chemo. Doc says he will not blame the anthracycline drug adriamycin. Some women do develop cardiac problems post this but then thats years after and not just 1 year after chemo. So thats it...at least it got diagnosed correctly this time. In the meanwhile they are training the body to produce progestrone on its own. From tomorrow ..running behind another issue begins..both breasts suddenly getting painful! So, lots of hospital visits happened the last 2 months!
happy to read all your messages as usual..
cocker..happy to hear that your follow up went on fine.
simple..glad to know that you do visit milwaukee once a year. will be wonderful to meet ....after having talked for days n days here!!
best wishes and love to everybody..
thanks for sharing your notes and stories and pictures of those gorgeous dogs!!
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BanR, that's good news that it's not cancer. I hope the cardiac issues aren't too serious.
Ally, I'm also glad that so far all the tests have come back negative for cancer. It will be interesting to learn about the nerve damage. Please let us know what you find out. You are right, it would explain the issues you have been having.
Arlene, hoping all goes well. Be gentle with yourself as you recover from surgery. Pain pills will be your friend. gentle hugs.
Peggy, I did not get tested for androgens. I don't think that is routine at this point.
Toby, different doctors have different protocols at the end of treatment. I hope the PET scan comes back "unremarkable" and is a source of comfort to you as you move forward. Wishing you the very best.
Eileen, sounds like you had a very informative check up with your MO. I do wish I had stayed in Florida for another month.....this has been a bad February...almost as bad as last year when I was recovering from chemo and had my surgery. Good thing that Feb. is a short month.
We are on day six without power at our house. Fortunately, the timeshare where we are staying is nice. We were also able to get rid of Alvin (the chipmunk) yesterday so that's one less problem to deal with right now.
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Ally, - waiting for more good news from you! ( What will they do for your nerve pain?)
Arlene, - thinking of you today and looking for update! Hope you are done and starting your recoup!!
Simple, - hope your power is restored soon!
Ban, - hope you are feeling better!
Sending BE WELL wishes to ALL!
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boy, it's getting hard to keep up with everyone! Arlene thinking of you all day today. I hope surgery went well and you are nicely doped up on meds! Sleep well hon, we are thinking of you
BanR, hoping that your cardiac problem is easily resolved.
Eileenpg, glad you had a great checkup! That 3D mammo sounds cool. Your lucky you get results right away! Keep it up and celebrate!
Ally, I hope your nerve pain is easily resolved. I was left with a lot of bone pain and get prednisone shots. Apparently it is oestioarthritis so I don't know if chemo made it appear sooner- I'm 'only' 56 ;-)
Luv, I hope you get good results from US I also hope your Mom is ok, hugs to both.
Toby, I have heard of a lot of mo's who like to check with a PET scan, I think it's normal for some treatment centered.
My 3 apts. we're moved up to this mon. Apparently my team went over all my results and it appears there is skin and muscle invasion. If my BS can't get good margins, then I'll have rads again. No word on chemo. I'm not really sure what this all means, but it doesn't sound good- unless it is normal to get invasion in those areas when it recurs at scar? I'll get more answers mon.
I hope I havnt missed anyone- with all this on my mind I find my concentration isn't very good.
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Shari, I'm sorry to hear about the skin and muscle invasion. I have heard of people getting rads more than once....it's not common, but it does happen. I'm glad your appointments have been moved up....less waiting time. ((hugs))
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Shari and Luv, - I realize that I left you (and others) out of my previous post, - nevertheless you are in my thoughts and i send all best wishes to you, too!
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No worries anotherNYCgirl!
I haven't heard any results today because of the weather. Power was out all morning and my doctor's office was closed. Lots of trees down. Snow is pretty but what a mess! I'm more worried about my mom right now though. PLEASE PLEASE pray for her. Her name is Carolyn Jones.
BanR, sorry about your cardiac issue but I'm glad it's not Cancer!
Arlene you've been on my mind all day! Hope you're resting right now.
Shari, Thanks for the hugs. Right backatcha! I'm sorry about the skin and muscle invasion. I hate it for you! You're in my thoughts and prayers. At least you should have a plan by Monday. Hang in there
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Shari - I hate that you have to play this waiting game after hearing the news about the skin and muscle. I wish they could just fit you in today and give you the details and a plan. When I was considering rads, I asked one of the rad oncs about radiating an area twice. He said it can definitely be done, that it's a case by case decision. So if your rad onc says no, perhaps you could seek another opinion - just so you'll have another tool in your arsenal. You are in my constant thoughts. Keep updating so we know how you're doing.
Arlene - hope yesterday went well. Keep up on those pain pills and let us know how you're doing when you can. Sending you gentle hugs.
Curly - that is actually how I truly feel deep down inside, but I have to put on a brave face and stay positive or I'll lose it. So thank you for expressing those feelings! I'll live vicariously through you for a minute lol.
Ban - so sorry to hear about the heart issues. I'm glad they got to the bottom of things, now they need to come up with a good treatment plan!
For those that asked about my possible nerve pain - I'm not sure how they will treat it. I haven't asked at all about treating the pain since I've been so hyper focused on finding out what the heck it is. I've had this very specific pain for 9 months now...same exact spots...so something is going on. Cancer or not cancer, this isn't some fluke. When it first started my onc gave me 100 mg Gabapentin. I took it for a couple months and it helped some. When I finished chemo, the pain wasn't an every day thing anymore, so I stopped it. I just started it again last night. Worth a shot, right? If it helps, I'll ask for a refill. It's supposed to help with hot flashes too, which would be an awesome bonus. I'm supposed to hear biopsy and bone scan results today. I'm glued to my phone and will keep you all posted. Thanks again for hanging in there with me.
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Alicia, keeping my fingers crossed for unremarkable results for you today.
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Curly - I forgot to mention, there is a wonderful group on FB called BRCA Sisterhood. It's for women who carry the BRCA gene. Some of us there have had cancer, but a lot of the women have found out about their gene prior to a diagnosis. Most of them choose to undergo the prophylactic surgeries, but some are also monitoring. I think your friend would be very welcome in that group. A lot of women come there and ask questions about the testing, etc. Hopefully she's negative and doesn't become a full time member though
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Ally in your pocketwaiting with you, hope you get that call soon.
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Thinking of you Ally.
Just FYI, I have a friend who's going to be on 20/20 tonight! She was a juror on the American Sniper killer trial. She is a 20 year Triple Negative survivor!!!
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Just spoke with my BS. It's good news and not so good news. Good news is the mass in my mastectomy scar is benign - surgical changes she said. Not good news is they still can't tell what the deeper mass is. I guess they didn't get a good enough sample. Radiology is recommending surgical removal, but I got the sense my BS wasn't thrilled about that option. It's going to be tricky since it's so close to my implant. I'm ecstatic about the benign result so far, but I cannot believe I have to wait longer for the full all clear...and I REALLY can't believe I have to have another surgery. This will be #5 in a year. She did say, however, she thinks it's highly unlikely it's cancer, so I'm hanging on to that.
Luvmydobies - I LOVE hearing about your friend! And how exciting she's going to be on 20/20. I'll definitely watch tonight or DVR it. Would you mind telling us how we'll know which one she is?
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Ally, - I am SO thankful that your news has been GOOD, - just sorry that you are getting it in 'drips and drabs' instead of all at once! Take a deep breath. ( I doubt that your BS would give you false hope. I have found drs to be brutally honest when they need to be! )
Luv, I will watch 20/20! As Ally asked, - how will we know who to look for?
Wishing everyone a calm, relaxing, and happy weekend!
hugs from NYC
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Ally glad you got some good news. Hang in there though!
My friend just said they did the interview but it's actually not airing tonight. She said there's more important news to report. Ugh! But she said they would let them know. So stay tuned and I'll let you guys know! Her name is Stacie Parks Matthews. I'll need to find out if they use their names and stuff. I'll keep you all posted.
She was diagnosed at age 35, stage II, double mastectomy, chemo, no radiation. She hasn't really followed a strict diet or exercise regimine. But back then they just didn't know as much as they do now about TN. She's been really blessed. I was in high school when she was diagnosed and my mom kept her children for many years, and we became close.
Also another lady that volunteers with the same rescue group as me is a 17 year TN survivor. She was stage II and had one lymph node involved. She had a single mastectomy, chemo and rads.
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Ally yes good news
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Allydb I have MS and Gabapentin was a lifesaver during several of my flare ups. I'm a little concerned because I have to come off my MS meds during chemo. They are concerned about taking too many immune suppressed meds. I haven't had an exacerbation in 2 years. Praying that the chemo drugs don't cause a flair up. I can handle only one illness at a time.
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My doctor called me and said my ultrasound was completely normal which is good news! But we still don't know what's going on. So I guess I'll be trying to get in with my GI doc this week. Don't know if I'll be able to because we had bad weather Thursday and Friday so I'm sure their appointments will be backed up! If I can't get in this week I'll see if my PCP can refer me to another one stat. We are supposed to fly to Florida next Saturday and won't be back until the 12th. Ugh!
Arlene, I sure hope you're recovering well. Check in when you can!
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Ally great news! Sorry you have to wait again, I know how hard that is but celebrate your good news!
Luv, that's great news also! A clear scan- love those words. Hope they can get you in before your trip.
Arlene still thinking of you, let us know when you feel up to it, hope your resting comfortably.
It's a beautiful sunny day here today. Took a nice walk with my daughter and followed some deer tracks into the woods, but didn't see any. Came home with cold wet feet but it was so worth it!
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LUV= Glad that was all good.
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Slv and all others, it's amazing how we appreciate the little things now, right?
Also waiting for Arlene to check in
Good news luv
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Slv and all others, it's amazing how we appreciate the little things now, right?
Also waiting for Arlene to check in
Good news luv
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Lisa this is so true. I'm forever grateful that my daughter had selflessly decided to stay with me for surgery. She is moving to Vancouver after so these special times are even more important. I'm oscillating between crying and being myself. This is so hard on my hubby and daughter but I've had so many setbacks with this. I still can't believe it's back, I was sure I had it beat
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Luv! What wonderful news! Hope you feel better and enjoy FL! That weather will be such a nice change!!
(I am just wondering, - could your pain be something as simple as lactose intolerance?? A few years ago I complained to my gyn about pain. His suggestion was to go 3 days without any milk or dairy products, - and he was right! Lactose intolerance can appear even if never having a problem with it before. Just a thought!)
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Sly58 its heart breaking to read this. I'm also glad you have the support of your hubby and your daughter. Hopefully this time it will all be gone after your surgery. I must admit I have never heard of anyone having rads for the second time but maybe there is some new evidence out there. Sending prayers and hugs.
LUV good news on the scan hopefully they are a little bit nearer to finding out what the problem is. Sending hugs to your mum and hoping she gets good news from all of her tests.
Ally some good news is better than none so you are half way there. Hopefully the deeper spot will turn out to be benign. In your pocket always.
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SO happy Luv! Where are you flying to in Florida?
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Thanks ladies! I am glad the ultrasound was negative because even though we don't know what's causing the pain at least my female parts are clear because it wasn't too long ago I was worried about those due to off and on bleeding/chemopause. So I guess that issue is/was from chemo. Still sucks not knowing if my periods will return but oh well! No Cancer there is a relief! Hopefully my GI doc can figure it out. AnotherNYCgirl I don't think it's lactose intolerance but will definetly ask my GI doc a bunch of questions. I'm making a list. It hasn't hurt too much the past few day's. Thanks!
If we do go to Florida for sure it will be to Orlando. Our nephew's high school basketball team is in the playoffs and if they keep winning we won't go because they will be playing still, plus we were mainly going to spend Spring break with them. But that will be ok if we can't because we want our nephew to do well with his team.
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Hello Shari,
I am just popping in to say I am sorry you are having such a bad time and wanted to wish all the best for your surgery and to let you know I am thinking of you.
Best wishes from the UK.
Sylvia
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Hi Sylvia, thank you, I think of you as well.
Just got more info from my 'electronic chart'. It is obvious to me that they have purposely released all my test results gradually- probably to allow me emotional time between each kick in the heart.
Apparently there is a tiny spot on my liver "too small to characterize" that should be assessed with focused ultrasound as none appeared in Feb. 2013.
A 'bulky uterus' was noted with a complex cyst on both right and left ovaries. 'Asessment of pelvis organs by ultrasound is recommended'
Ok, so the only test that I havnt received full info on is pathology of core biopsy. I know I was told it was 'about' 2.1 cm and grade 3. So because it has 'likely invaded skin and muscle' I realize I am now stage 3 :-(
I honestly don't know how much more I can take. Every time I get news, it's bad. I don't know how to hold onto hope and stay positive. I'm feeling like I have to come to terms with my mortality. I'm sorry I'm being a downer but it's so hard for my hubby to hear me express these fears and I have to express them because holding it in is tearing me apart.
Ok, so I'll try not and worry about the whole picture and concentrate on my appointments tomorrow. I will try and make the best decision for me regarding reconstruction. I will ask questions and try and feel at peace.
Thank you everyone for giving me a place to express my fears
Shari
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Shari - I've been away from these postings for quite awhile, so have been reading about all the issues our group members have been having. I agree with you that this forum is important as a place to express our worries without upsetting our immediate families (especially our spouses).My thought and good wishes are with you as you face whatever comes your way. I'm sorry to read that you have so many reports that are bad news.
I HATED having people tell me to "keep a positive attitude". The only thing I was positive about was that I positively hate cancer. Don't we all? Nat
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