Calling all TNs
Comments
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simple life - wow, I am impressed that you went to your ballroom dancing class - good for you! Wishing you a speedy recovery and I bet you will feel much better once the torture garment is off - that must be soon!
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Anyone on this thread that has had the Tram Flap Reconstruction? I had it done last April and I seem to be going backwards in my recovery. Having a lot of discomfort in my ribs and torso area. I have never not been without the discomfort since the surgery but this seems to be a little different and has been acting up the past two weeks. It is just wearing me down. Emailed my BO and she told me to talk with my PS. I am having a lot of anxiety about what it could be. I just had my tattooing done end of January and mentioned to the PS Assistant that I am still uncomfortable but it was before I was having this new type of discomfort . She told me I should wait until April to call the PS because it wasn't quite a year. I may be getting my self all worked up over nothing but I am really worried and will call the PS but is the PS going to order scans or anything? He doesn't seem much into the cancer part of my recovery but doing what he does best. I have a really good team in Boston at B&W and Dana Farber so I am a bit confused at the lack of concern. The discomfort was before I was doing shoveling, can't seem to recall moving in a such a way I pulled something but who knows. Would love to hear from someone that has had the Tram Flap Reconstruction. I had it the same time I had the BMX. Thanks!
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Inspired - what is WBC? I was allergic to the taxotere so just curious if my WBC is low - what ever that is!!!! Thanks
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Inspired I think I just figured it out - white blood count - mine were pretty normal as far as I know - nothing was mentioned to me during chemo this time but I do recall from the last time I had chemo it was mentioned that the blood counts were good
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Simplelife you are amazing - I am still laughing you went ballroom dancing with your drains still in!! Kudos to you!!!
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Simple, that is funny! You did ballroom dancing with drains? LOL I bet that felt good to resume a normal activity!
WBC is white blood count. I've always been at the low end of normal since Taxotere, I clock in right on the edge of normal, which starts at 4.0. My Onc said this is normal for me. Even before the Taxotere, my wbc has never been much higher. He said that is okay, normal is normal and for me not to try and make normal more normal.
LPBoston - Since your BS said to see your PS, then I would go ahead and go see your PS. I do think it's a good sign that your BS is not suspicious. Your doctors probably all share the info about you electronically, and he probably knows that your most recent labs show everything normal, so they probably don't expect anything cancer related. Your PS will feel things and move things around and he will have a real good idea of what is going on. Definitely go to him first. Also, you could have done something to strain yourself without realizing, such as: have you flipped your mattress, tried to reach far up high for something, carried a grocery bag at a weird angle or pulled something heavy out of a cart without using your leg muscles first, driven for an extra long period of time, used a new vacuum or changed the vacuum bag (which makes it harder to push at first), etc. Definitely see your PS as soon as you can, but I really feel it is part of the healing process, maybe even some scar tissue building. Are you supposed to do boob exercises? I read on the internet sometimes they recommend 15 seconds of moving your boob first north, then south, then east, then west and holding each position for 15 seconds on a daily basis forever. I did not have flap, but just wanted to chime in on some ideas for you. If after meeting your PS you don't feel that things were investigated thoroughly or that there is not a good explanation that suits you, than it is okay to request an ultrasound or other screening measure at that time. Whatever happens, do voice your opinion and keep going forward until you have confidence that the question mark has been answered. Also could extreme cold weather have altered what you feel? I do think since the feeling has been there all this time (although at a different degree) that it's still related. Maybe you are starting to get back even more sensation, as more swelling continues to go down, etc. If this was me, I would probably even try one of my standby muscle relaxers or pain pills to see if it just is a bit of inflammation going on. If you decide to do so, run it by your doctor first.
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Inspired - do we even know what normal is anymore????
Thank you for all the guidance - you are a wise one (wise in knowledge that is)!!!!
I will call the PS but will try doing other types of exercising and stretching to see if I can't get myself out of this bind. As for moving the boobs, he did tell me to massage them but I think it's just weird but that's just me so I don't as often as I should. As for the cold yes maybe that is what it is as well - we have been hammered this winter with the cold and snow. I am so looking forward to spring!!!! It's going to be about 45 degrees today - I want to go to the beach!!!! Wishful thinking
Have a great day!
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Hello, I'm new to the group (so happy to have found it) but I first wanted to tell lpboston that I also am still developing weird aches and pains after flap surgery. Scar tissue continues to build up and after effects of radiation have tightened the area. It can be quite uncomfortable at times.
Inspired, I will try the NSEW exercises. Thanks!
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LPBoston - if you are having a hard time stretching the torso out I have found through PT that a pulley and a rope work wonders on keeping me stretched.
I have reached another family milestone....my son turned 4. He is such a sweet and funny little guy. He got a bike for his birthday and has been flying around the cul de sac since then.
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New to this thread. Surgery, dbl mastectomy jan 29th, TE with one fill. I was diagnosed in August 2013 tnbc, dcis, 2b with one node biopsied positive. I am working with a teaching hospital and have the utmost confidence in their treatment plan for me. All the research I've done supports their plan for me. I had 4 dd a/c followed by 4dd Tax, I opted for the bilateral even though the left side was free and clear. My doc tried to do a test (not sure what it is called) during surgery, using a die inserted into the tumor to follow the die through the lymphatic system. Unfortunately the chemo had obliviated the natural flow of this system so my OS took the sentinel node and 6 ancillary nodes as a pre caution. I had tissue expanders inserted during surgery. My biopsy results showed clear margins on the tissue and nodes removed during surgery. The next course of treatment should be 5-6 wks of rads. However, I am a candidate for a clinical trial where some will receive rads and some will not. The theory is no rads are necessary with a mastectomy with clear margins.
I am out here now looking at reoccurence stats and other opinions to decide if I want to be a part of the trial. I could save myself from unnecessary rad risks if the overall survival rate and reoccurence rate are going to be the same without as with rads. I am open to comment on this decision.
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OneFineDay, I got three different opinions regarding treatment and all recommended rads. But I did have one positive node before surgery, no others after surgery and clear pathology. Complete response to chemo. My surgeon originally mentioned that I may not need rads, but my MO, and two others both recommended the rads to me.
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OneFineDay - I did not have rads, but I did consult with an RO and my case was presented to two tumor boards.
I do think this article will help you with some of your questions. Also, the fact that you are with an academic hospital is exceptional. Those facilities are supposed to be the "go-to"answers in treatment - like when someone has two conflicting opinions, it is often recommend the tie breaker in the decision be made by seeking the opinion at an academic hospital.
Here is some detail on some published information regarding post mastectomy radiotherapy and local failure rates. I had it saved on my computer but found a direct link for you.
http://www.acr.org/~/media/40e521e42778421dbd4d414...
Also, what does it show in the NCCN guidelines for your particular case? I would review this manual as well and see if based on your particular attributes if radiation is needed in your case.
Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer
http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages
What is the NCCN Guidelines Manual?
"The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers,
working together to develop treatment guidelines for most cancers, and
dedicated to research that improves the quality, effectiveness, and
efficiency of cancer care. NCCN offers a number of programs to give
clinicians access to tools and knowledge that can help guide
decision-making in the management of cancer."- John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...
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LPBoston: Yes! There is eventually a normal. We are all different, but I can tell you (although I did not believe it at 6 months out, etc) but I did resume a normalcy finally! I found my stride about 18 months post chemo. I now wake up, enjoy the day and go to sleep with no negative thoughts entering - although I do know why I'm having to make my blueberry kale smoothie every day, and I'm well aware why I can't eat the entire package of oreos ever again! But my points is, you will hit your normal stride ... and ironically, despite what others had told me to expect, I do feel completely normal, but a new and improved normal. I'm bouncing off the walls, I out perform all the guys on the ellipticals at the gym (ha ha) and I'm back to my former self (but with healthiest eating and working out). Part of the transition of this resuming normal I think happened once I was able to color my hair and grow it out. Chemo can also affect the mood and enhance any anxiety that one is feeling.
I think we need a group beach outing. LOL
JenJen: Congrats on your sweet boy's 4th birthday!
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JenJen - thanks for the advice and a Great Big Congratulations to your little boy on turning 4!!! I remember those days!!! Enjoy every minute of him - they turn on you when they are in their teens but in their 20's they come back around again!!!
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Just noticed we are on page 800 of this thread! Wow!!! Titan you started a wonderful thread and I am thankful!
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Titan - I am also thankful!
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I am in on the beach trip but it has to be next summer.
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same here, next summer.
Peggy
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I haven't been on this particular topic since finding out I had TNBC in October. I have come so far since then. We are not statistics. We are people and everyone is different. I cried for 3 weeks after researching TN. It's so hard to find any hopeful stories. We only hear the bad. I won't be looking up any more info. on TN because, for me, there is no point. I did the research necessary to decide what my treatment options were. I am currently going through chemo. 4 a/c and 2 taxol down with 2 to go. Followed by 6 weeks radiation. I have already had a double mastectomy. I was first diagnosed in 2007 at 34 with D.C.I.S. I opted for a double so I would never have to think about this again. Not. Here I am. My point is that I choose to believe that I am doing everything I can to kill this beast and I feel that I will succeed. If I look up TN I will always feel like I have a death sentence. I would rather live life happy and not stressed than worry all the time that death is waiting around the corner because of these stupid statistics. I wish that I hadn't read SO much about it in the beginning. It is horrifying. If it comes back I'll deal with it then, but I will not let the "what if" steal what joy I have left.
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Welcome one....I too have tissue expanders, was suppose to have implants last fall, but had low platlets, so surgery has been cancelled twice. It is now scheduled for March 28th, but platlets still low. Mind you, the level is not at a danger level, but my ps is super uptight. I am very eager to get these rocks out. So if he cancels again, I will be looking for a new ps.
I am fairly optimistic about overall recovery, because the numbers are still in our favor for surviving this beast. Its hard to not be afraid tho....Hang in there....
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I wanted to let you all know that I have also found a few other great forums as well, in case any of these topics interest you.
What's for Dinner Forum? I like that one as you get lots of great healthy recipes and it helps if you are lacking ideas for dinner.
TN - UK forum. Sylvia and the others post a lot of up-to-date medical information - I think that is where I first had assistance with compiling the information I needed on Metformin.
Let's Post our Daily Exercise Forum - This forum is helpful as well because you can post your daily exercise, it helps motivate others, and if you don't feel like doing something you can read what others have done and feel motivated. They are also very animated on there and continually post funny pics and photos to keep us going. One lady walks every Wed with a group of ladies and they take a weekly photo - so every Wednesday we see the group and where they are.
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Hi ladies! Just stopping by to say I do read the posts and think of all of you. It is a tough road, but things do get better after treatment as time goes on. I had a rough time with lasting side effects from chemo and surgery, and am now finally starting to feel better. I found out a couple months ago that I have a terrible pinched nerve at L5 and it had been causing me a lot of pain. My first back doctor was horrible. Didn't believe in any type of medication, just pt and to have the steroid shot. Well, I had to see a different doctor for the shot and I really liked her. At first she would not take me as a patient because I initially saw the other doc. After speaking with another doctor, who recommended I just call and transfer my care to the doctor I like, I switched and it was not a problem. The first shot worked for about 2-3 weeks, so I am getting another next week, starting pt again, and she started me on gabapentin. Took my first one tonight and it helped within 1 hour. Does anybody else take gabapentin?
The question on rads, definitely depends on your situation. I had a complete response, and it was still recommended to me to do the rads, but my cancer had spread to internal nodes which could not be reached by surgery, so even though scans did not show any cancer, there may have been some still hiding, so I did the radiation.
It has been almost 3 years since my diagnoses, stage 3C/4 depending on which doc I spoke to. I know I will never be out of the woods, but feeling somewhat hopeful:)
To those that did not have a complete response-there are many women who have done great without a complete response. I can't think of their names on here, but I am sure they will stop by!
Stupidboob-I hope you are feeling better! I am finely starting to feel a bit more energy, and it has been 2 years since I finished chemo, surgery and radiation, so it can take awhile! And I am certainly no 100%, but better, and I can live with that.
Cocker- I tried to get a picture of my dear Romi with one of my chickens. It was so funny, my chicken was cuddled up right next to Romi. All animals just love that dog!
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bak re: gabapentin..It made me so sick I had to go to ER for spinal tap. They never decided what caused the odd results of the test. It was prescribed to chronic headaches. So glad it is helping you.
Question: Is complete response the same as NED? I was diagnosed just over 3 years ago and was told I was NED after MX, chemo, radiation. When I think about this I do a happy dance. I think I'm going to live to a ripe old age. Also glad you are getting to feel better.
In the last month or 2 I have finally gotten back to having enough energy to do lots of things I used to do. How wonderful is that! Reading, making quilts, gardening, going to lunch with friends. It amazes me how long it has taken to get to this point. I finally have a MO that I love. Had to go through a few before finding this one.
Best wishes to all TNBC sisters, Jan
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I am starting chemo 3/7 so I will be going on a Friday. I have a question about Neulasta, which I hear is common to get the next day after our infusion to increase white blood count. What do you think happens if the next day is Saturday? I doubt if they are open on a Saturday? I know, I'm worrying ahead of time, but I just thought of this.
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Meg, they will probably have short staff there that day just for that type of thing. Wishing you positive thoughts for you first treatment.
Nancy
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Meg-I had the shot on some Saturdays. It surprised me that they did have staff, but I remember some people in there getting chemo!
Jan-we are about on the same time line. Yes, it has also taken me a long time to get some energy back, it has been rough, but doesn't it feel good to finally get to do some regular activities! Wow, that is terrible about the gabapentin! That must have been scary. My doc looked at me seriously and said to call her immediately if I felt any weird symptoms, so it seems like some people do have odd reactions to it. Was your reaction immediate or after a few days? I believe NED is the same as complete response. No evidence of disease, so they did not find anything in the tissue. They probably should have labeled me as NED, not complete response, because they could not get to my nodes that were positive, so really no telling if those had any tiny cancer cells. But whichever, NED or complete response, I'll take it! It took a lot of chemo to get me there, but I truly believe if he had not treated me with the AC I may have not had the same outcome. Plus he did the 24 hour drip in the hospital which he said is safer and more effective. But having the AC for a second time really knocked me down. Did anybody else have 6 rounds of AC? I had that and then 12 weekly abraxane with avastin every 4th week. I also had zometa for a couple of years. Crazy when I think of how much treatment I had.
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I agree - they probably have a doctor on call each Saturday to handle those things, at least for half a day or something. Best wishes on your first treatment. Here is a tip: To prevent nausea, ask them if they will run the drip slowly. Even though they give premeds in the IV bags ahead of time, she said they were going to drip it slowly the first day. It worked so well, I never got sick at home, so each treatment thereafter I asked them to run it the same way.
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A complete response to chemo is only known if the chemo was administered before surgery and radiation. If the doctors see that the tumor (s) were wiped out during chemo, then they know a patient had a complete response. Same with if there was cancer in a node before chemo, but gone after chemo, that is also a response to chemo. Complete response is when all pre-known cancer sites before chemo are now cancer-free after chemo. It means the cancer sites had a complete response to chemo.
No evidence of disease is an on-going maintenance term to mean that it appears you are cancer-free - meaning there is nothing to suggest otherwise. If you have normal labs, no symptoms, and any other testing showing normal values, ranges, images, etc., then it is no evidence of disease.
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bak - I'll claim chemo brain, but I honestly don't remember how long it took for the gabapentin to stir up my trouble. It was horrible, and 1 doctor wanted to increase my dose because he didn't believe the med was causing my problems. Another doctor told me how to slowly wean myself off the drug: slowly. This was all over a 4 week period of time.
As Inspired writes, I am NED. Happy dance. My new normal is not like old normal, but I'm NED. I'll take it.
Nice chats tonight, gals. Jan
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I was just coming back on to say that partial response, complete response and no evidence of cancer are all great things and every one of those calls for a celebration!
Bak, wow, 2 years of treatment. You my friend, have a lot to celebrate, you've been through so much. I feel it's wiped out for good!
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