Calling all TNs
Comments
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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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BAK94 I am so pleased you have at last found the reason for your back pain and that you are feeling better. You have had that pain for too long. So glad you have now got some relief. Glad the Gabarpentin is helping and so, so, glad you have new doc. This human also loves that dog. Romi is gorgeous. Can just see the chicken cuddled up for warmth to Romi, what a picture it would have made. I inadvertently left the garden gate open today while I turned on the watering system for the garden and Chloe rushed right out to see the little girls across the road. She didn't even bother to look left, right and left again lol. If she had been hit by a car it would have been no fault at all of the driver.
Jan NED or complete response, who cares as long as you got it. So glad you are doing great girl. Yep time we got back onto those quilts or reading that good book. Do you read Sarah Donati or Leslie Pearce. I have just finished a series of both of those authors that were excellent stories. They are a series of three books each based on a family and you read from the beginning of the family to the end and all they go through. Very good.
Mikesgirl17 I agree with stupid statistics. Listen to your body, if you are feeling well, eating a little bit of everything in moderation, sleeping well, exercising, and have no pain why would you want to spend all that time on the computer looking up statistics when you could be "living". They are of no help to anybody and do nothing but put the fear of God up newbies. Go to your docs, onco's, BS's, they are the ones that can help you with your questions and fears, not out-of-date stupid statistics. I don't even read those posts anymore.
Titan long time no post girl. Are you doing the Ironman over here next month. Your room is ready.
Hi Linda hope you and those gorgeous girls of yours are well and happy.
Jenjen great news about your wee man turning 4. Hope he had a great day. Make the most of those days because they are gone in a flash.
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megomendy,
I had the same problem in December, we moved my weds treatments to Friday. My NP OC told me I couldn't receive the shot before 24 hours, so each time I finished chemo we would set the beyond that time the following day. However she said it was perfectly fine to do it Monday. She said the ideal window is 24.01 - 72 hours after chemo. You will be fine.
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Meg, I had all of my chemos on Fridays and got my shot every Monday morning first thing - had no problems! I had heard on the boards of some women giving themselves the shots at home.
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inspiredbydoice, bluebird144, and others. Tu for the references, thoughts and opinions. My onc rad explained the reason for the trial as follows :
The standard of care for my situation used to be (some still use it depending on the circumstances),
Surgery,chemo,rads
If you had zero node involvement pre surgery, didn't need rads.
THEN they found chemo, surgery, than rads worked better because they could see what the chemo did, by postponing the surgery, and in some cases do a lumpectomy in lieu of mstctmy.
He said the challenge they have now is if chemo gives clear margins then why not follow the recommendation of rads as you would if the person had no node involvement pre chemo.
This makes sense,and I hadn't thought about keeping some of my arsenal for later. I'm close to making my decision, but will continue to monitor the site. I'm off to read the links u sent.
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Megomendy, my insurance would not pay for the shot to be administered at the center so they shipped it to my home and I administered the shot each time. never a problem it was there in plenty of time. I am diabetic so it is no problem for me, but it is not hard anyway. Just an idea.
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Annie...I'm here..just reading all the posts....been super busy! would love to come to NZ to see you...we would have so much fun....
agree with you all in googling TN....I was so naive 5 years ago when I was diagnosed. I didn't know much about bc let alone the different kinds....I only google tn when I want to freak myself out...which is NEVER! don't do it...lol
I'm glad you like this thread...I was reaching out to others in a time of need and found you all.
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Hey everybody..
I had my 8th infusion a few days ago and post that, have been reading all your posts. Was terribly tired to type back but its go good to hear from all of you.. we don't know each other face to face, yet it seems like a big family to me!! BTW, it was my last chemo, but I prefer not calling it my last...I really don't want to challenge fate!
I am getting mixed feelings, now that all my 8 chemos are over. When the first one began in Nov it seemed like a long long journey but somehow ACs and Taxols, flew! A little scared too, since now I know killer chemo will not be around and my body's immune system has to be on its own to deal with malignancies, if any.
Now the turn for radiations have come. Could you please advise me which radiation procedure to opt for... just begun my research...IMRT, IGRT, Gamma Knife etc.
Thanks in advance!!
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Thanks for the info on the neulasta. Funny, how that is my big worry right now. I think there's a lot more to worry about. I'm sure my husband will be able to give me the Neulasta at home, if needed.
I was scheduled to get my port in Tuesday, but the doctor's office called me and said that one of my labs was high, something regarding clotting, and the interventional radiologist was concerned about putting in the port. They are repeating the blood test and putting the port insertion off a few days. But the MO office said, well she just had a lumpectomy and had no trouble with bleeding/clotting then! I guess nothing goes smoothly, huh? Has anyone gotten the port put in w/o the "twilight anesthesia"? Just with the local? I read something in another forum where the woman declined the twilight and felt fine after?
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Hello to all you lovely ladies!
Meg- my facility also gave me the shots to take home and give them to myself.
Bak- I'm on 1800 mg of Gabapentin for the nerve pain after the surgery for a herniated disc didn't work. I'm having no problems. My doctor warned me that it can cause memory impairment. I don't know whether to blame the drug or chemo brain.
Well ladies I'm off for some fun today ladies. (No Cocker and Titan....I'm not heading to the casino). I decided that each time I finished chemo I would do something on my bucket list to celebrate. Last time was a Trapeze swing. ( there are probably still some traumatized children out there. You had to see the looks on their faces when they turned around to see an old, fat, bald woman standing in line behind them!!!)
Today I'm taking my friend Carol (been friends since college) with me to go wind surfing. For those not familiar with it, it's a wind tunnel that simulates the experience of a parachute jump. You are able to fly in the air like you would during a jump. Now I wonder how many people I will horrify this time. I'm not bald this time.......but I have to take my false teeth out!!!! It's gonna be ugly ladies, but my highly developed sense of humor just doesn't give a shit anymore. Today I'm going to celebrate that I'm alive (and still kicking for an old woman) and make another precious memory with my dear friend.
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Kathy - I love the visuals you gave us! Too funny
I say go for it and enjoy every second! Be sure to share your experience with us.BanR - I think most of us had mixed emotions about finishing chemo tx. You may soon find that rads give you a continued sense of kicking cancer's a$$ and the time will pass quickly. After rads were done, I worried about whether we'd done enough to kill every cell. My MO wasn't in favor of either CT or PET scans because he thought the anxiety factor outweighed the benefits of the scans. I countered with how stressful it was not knowing whether I was NED and that tx was successful. He ended up agreeing to a scan!
I think it's normal to feel like you've been pushed out of the nest when you're not sure you're ready to fly solo.
Good luck as you go through rads - they are definitely doable!
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