Calling all TNs
Comments
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If I remember correctly, I went twice a week for about 6 weeks. I also did PT after my mastectomy last year to help with range of motion and had the same therapist. She did give me instructions of things to do at home, but since insurance covered it, I figured I might as well go. The hospital is right down the street from my home and office though, so it's very convenient for me.
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I only went three times, until the problem was resolved. My therapist also gave me exercises to do at home. They were helpful in getting me back to full range of motion within about 6 to 7 weeks after BMX.
Trish
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Wow, this is the longest stretch I've seen without a post. Hope everyone is out doing something fun.
My physical therapist is new to my cancer center. I don't think she has worked with many breast cancer patients, but I will keep trying the things she showed me to get my lymph fluid moving away from my breast.
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had a follow-up checkup with my MO last friday
good news all around. he said that the tumor is responding well to the chemo. To me it feels softer than it was and even my right chest seems lighter. (or maybe that's just my brain but hey i'll take it!). so zapping those rogue cells to oblivion as i type. And he was also happy to hear that i elected not to take some of the meds he precribed for post chemo side effects (hyperacidity etc) because i wasn't experiencing the side effects they were prescribed for.
currently gearing up for the next session in two weeks.
I hope everyone has a great weekend!
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mkn, that's great news!! Keep the good work on.
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thank you ewu! how have you been doing??? I hope everything is okay
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Just a small bit of activity on here lately. I don't necessarily see that as a bad thing. Sometimes no news is good news. Hopefully we'll see the day where there is no more need for strings like this because there will be a cure!
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I agree Alhusband. No news sometimes is good news. Great news mkn. I'm progressing well. I'm trying to build up my stamina for just regular things. walking more each day almost up to a mile. So many leftover side effects. Neuropathy and lymphedema. Hope all are doing well.
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Hello Everyone!
I still come to this string every day. I am always encouraging (through my quiet time in my prayers) those who are starting treatment, those who have been out of it a short time, and those of us who are into year 2, 3 and beyond from diagnosis.
None of this is "easy" but the burden does seem lighter when we can share.
I have been dealing with an incredible amount of anxiety these past few weeks- nothing specific that I am anxious about, so, perhaps just another stage in being a survivor. I wake every morning feeling light headed and heart pounding. By noon or so I start to settle down. In those morning hours I cannot concentrate too well and I get a strange feeling of overwhelm. Anyone else ever go through this? I think it is most likely generalized anxiety from what I have read but need some insight from any of you who might have gone through this or know someone who has. And, how did you/they cope!
Thank you!
Blessings all around,
Janet
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Batesburg you may want to ask your doctor about Effexor. My wife had similar experiences and her doctor prescribed it in a relatively low dose. It worked like a charm. For her, the effect was twofold. It calmed her anxiety AND, for her, it also reduced the number of "hot flashes" she was experiencing dramatically!
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Bates/Janet,
Yes, - I know exactly what you mean!
I am interested in responses to what you described! Alhusband, - Good to know that your wife found a solution and is feeling better! I will keep Effexor in mind, but I'd first like to try to find an approach without medications, if possible.
Sending BE WELL wishes, and hugs, to all here!
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hi everyone, I'm vanessa. 27 at diagnosis 11/2016. 4 rounds AC and 12 carbo/taxol.. lumpectomy with axillary node dissection and reduction. 30 radiation treatments to collarbone and left breast. I had PCR at the time of surgery and all seems to be well but I finished radiation 7/31 about 6 weeks ago and I'm starting to feel some neck discomfort. Anyone else experience that? On a side note, my left breast seems to have more scar tissue now too
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Hi gang, and so once again the roller-coaster starts again for me. MRI to monitor the lumps and bumps was Friday. Good news - lumps and bumps are stable, no change, and no signs of malignancy. YEAH for good news... the bad news - I ruptured my implant... AUGH!!!! I have only had it in for 18 months. I have no clue how I did this, I just know that I am beyond angry. And so, once again I need surgery. Which means pathology, which means more anxiety and hold on... here we go on the emotional roller coaster again. Blah. Thanks for letting me rant... just needed to get this off my chest! (hahaha a little pun at the end there... didn't even intend it!)
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Vanessa, call your RO's office and ask if they can send you to physical therapy. They can teach you massage techniques to help relax the scar tissue and maybe prevent it from getting worse.
Curlyq, I'm so sorry you need surgery again. How aggravating.
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Hi Vanessa,
I had A LOT of aches and pains after radiation and still have even sharp pains all around the area, including my shoulder blade and neck region. It seems that everything is so "tight" after radiation and all the nerves and muscles are sensitized by all the additional treatment- i.e. mastectomy, ALND.
It really is a "new normal" in that your body needs significant time to settle down and adapt to your new conditions and it is important to be patient in this process. Better said than done!
Most of all, try not to worry and speak to your docs when all else fails! My team has reassured me numerous times when something seemed "not right"!
I hope this helps you!
Janet
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Oh Curly! Wonderful that lumps and bumps are fine (yay!), but a ruptured implant? ugh! was that discovered during the mri or did you notice something on your own?
Never a dull moment it seems.
Wishing all here a happy and healthy Fall, and to those who celebrate, Shana Tova!
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AnotherNYCGirl, UGH!!! So, three weeks ago I was suffering from unbelievable pain. I called the doctor office, unfortunately she is out on maternity leave, so her nurse, via the secretary called me back and told me to wear a tighter bra and take some Advil.... So... I did that and asked when the doctor would be back that I wanted an appointment. They told me to call next week for an appointment. Then randomly, I get a call from MRI to schedule my follow up... 2 months early. Coincidence? I think not! My radiologist has been on this rides since it started... I am so grateful for her. She is so diligent in reading my reports and talking with me when things are not right. She was the one that noticed the implant does not appear right. GRRRRRR....
So here I sit... almost 4 years since the start of this roller coaster ride and looking at surgery #7 on the cancer side. I'm tired. I have had enough. Every time I have surgery it is 6 weeks of no exercise, no lifting, and restrictions. My muscles are atrophying and I am gaining weight. I'm so angry!!! My husband and I are in agreement to get the implant out and not place another. I want the left side out to... enough is enough... just want to be able to live without worries. Don't we all??? Just so frustrated!!!
Any one on here undo the reconstruction and go flat? I just want the pain, pressure and tightness to be gone. I just want to be able to get back to exercise and doing the things I love!! Again, thanks for listening to me rant, Happy Friday all!
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Curly, - I am so sorry that you are dealing with this. All we want is to have some level of comfort and live a regular, normal life! I understand your decision, as I am sure many here do. I wish you a speedy solution to your situation!! Keep us updated!
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Hello everyone,
I've been in and around the BC boards for awhile but I don't think I've ever shown up on this thread. I am so grateful for this resource. It is a great comfort to know of this community and that I'm not alone in my anxieties and fears going forward. I finished rads and all treatment in January and started work again full time recently, so there's been a lot going on. AIl the aches and pains, though -- I teeter between attentiveness and anxiety. I still have occasional chest pangs/pains near my (removed) port site and where I had rads, and have gone to the doctor twice to make sure it's not a recurrence. Cancer used to be an eclipse, but now it's an orbit. Still there and circling afar, but still there. And learning how to live with its presence --- there's the rub, eh?
Trying not to cry wolf but also paying attention. Lots of coffee. Learning to trust again - that's a big one. After cancer, how do you - or do you - learn to trust the world again? The innocence is gone. There is an open door to mortality, sisters and brothers, and for us the wind is blowing. This is not necessarily bad and can be a source of strength. But it is the loss of an old life for sure.
Sorry for the rambling. Wishing you all a peaceful Sunday morning and good week ahead.
Love out.
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Jojobird lovely words. Thanks for sharing. As a person just starting the treatment journey I truly appreciate and relate to them-- especially the part about the 'loss of an old life'
Have a nice Sunday.
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Hi. I've been posting a bit on the ILC board, but I'm also triple negative, too, so I wanted to introduce myself here.
It was a month ago today that the radiologist doing my diagnostic ultrasound told me I needed to "bite the bullet and face that I had cancer". That's when it hit me like a ton of bricks, before the biopsy was even ordered, let alone before I got the official pleomorphic ILC results back.
The second gut blow came when I was at my first appointment with my breast surgeon 3 weeks later. She's the one who told me that I was TN. I had been spending days before reading up on ILC, almost all of which are ER/PR+. Now it seemed I was in the dark again.
I had a PET scan last week that showed that there were no far off colonies of ILC setting up in other parts of my body. Only the known tumor showed, with some minor activity in the lymph nodes. My oncologist said it was a good result. The tumor's SUV score is 16. I'm having trouble understanding what that means as a bit of info on its own, or if it's only going to be used as a starting reference point as I get treatment.
MRI was yesterday. One reason is to get a better idea if the tumor has not attached to the chest wall. The Mammogram and Ultrasound say yes, doctors' hands-on physical exams say no. I'm believing the doctors are right.
My oncologist doesn't want to start chemo until she has a 2nd go at my biopsy samples to test for hormone receptors because it's so unusual for ILC to be TN. I'm angry the outside lab is stalling at sending my samples to my doctor. We may just do another biopsy. (it's ok since it gives me time to get the root canal i need taken care of.)
If TN is confirmed I'll start 2 rounds of chemo to see if it is working. If yes, we'll continue on the full course of chemo before surgery. If after 2 rounds there is no tumor shrinkage we'll go right to surgery.
I hope it works. I still need more time to work out in my head what surgery I want to have. I'm also getting genetic testing which could inform that.
Wow, what a month it's been!
I want to thank all of you on these forums. I've learned so much from you and have really been encouraged by you.
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Thanks Jojobird .... that's very much how I feel - I have four taxosl left to go.... have been very sick since I started - (already did my AC) it's constantly with me now (the 'cancer')... the realisation of that is still sinking in... I met a gorgeous stage 4 lady today.... I want to be there for her... cancer has been the loneliest 'adventure' I've ever been on... none of my friends - despite my upbeat positive outlook - want to 'hang out' anymore - it's like I'm a depressant... lol im not - im still bubbly positive and fun.... I am just physically not great - my bones are so sore - my muscles so worn - I have worked full time through this to keep my mind off it... but you are right - we will never be the same... better I think - lol I was a grub - Chemo was my cocoon - watch out world when I break out! Im going to fly..
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Aw, ladies, you make this workday sing. Of course it's morning and I'm off to launch the AM with coffee and am so glad I stopped by.
eightoutof8, I wish you courage and the right not to be courageous, both at the same time, as this journey starts. You are so very not alone and there are many of us surviving and moving on.
Agatha, that is a whirlwind for sure. It is a tremendous amount to process, all within a short time frame, and the emotional shock is huge. Please keep us posted.
Abloorable, may you be that butterfly rising from the chrysalis, with colors the world thinks are fire.
Love out.
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Abloorable, Jojobird, Agatha, eight, and all here, - I have said this before, - I wish we could all meet for coffee/lunch one day! You all are amazing, and understand what it feels like better than anyone else that I know. Thank you for being there and sharing your thoughts and feelings. These boards are such a a HUGE help!
Hugs from NYC
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Abloorable, taxol was worse than AC for me too. I was so weak at the end, not to mention that I was allergic to it. You will soon be finished and then onward and upward! Woo hoo!
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Why don't we set a date for a weekend later this fall or next spring in NYC and we all meet???
I will be there FOR SURE!!!
Thoughts?
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Or, perhaps more central, like Chicago??
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ladies you put a smile on my face!!! Lol I am not feeling great - but I always 'make myself up' to go out - lol no one knows unless I tell them I'm on treatment - that makes it worth every minute! Compliments from strangers who don't know I'm struggling makes me nearly punch the air in front of them.... I just want to be 'normal' despite having 0 energy and needing to go to bed at 5pm lol.... someone asked me today would I do Chemo again? As sick as I feel - dreadful - desperate and exhausted... yes I would ... I even on my darkest days I would do this again.... I hope that inspires someone to keep hitting it out of the park today.... it's awful yes - but it's going to make me well... and I will keep going and going as long as I can.... kick ass ladies xxx
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PS BETWEEN Chemo and radiation I will be in the US for two weeks lol - thanksgiving with my mom ... SC Greenville area.... let you know ladies xxx
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I spent a night in Greenville, SC a few years back. I really liked the downtown area. Hope to get back there sometime.
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