Calling all TNs
Comments
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Hi Everyone,
I know we are all aware of the importance of TNBC and exercising.
How long did you all wait to resume walking or treadmill or exercising while recovering from surgery?
I had my exchange surgery on Wednesday and the lady at the PS office said no exercise for 6 weeks. That seems a little long! What did you all do?
Up until last Tuesday my normal regime is 12 miles a day for 6 days and then on 7th day half the mileage. So as you can imagine, I would like to be able to at least walk around for an hour outside or even at a 2.0 speed on the treadmill.
Please let me know what you all did. I do see my PS for my first post-op this Thursday.
Thank you all so much for your advice and tips!
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In talking about what Hope posted about flax seed, I buy a big bag of it from Costco and it's only $7 or $8. It's 100% organic whole ground flax seed. And they process it a certain way to preserve the nutrients during the processing which I think is called cold-milled press. But it's already ground into powder and is USDA organic, if any of you can get it at your local CostCo store, and I'm sure it's sold elsewhere. Probably Amazon as well.
It's called FlaxUSA and it has 2800 mg of Omega 3 per serving, it's gluten free and 4g of fiber per serving. 2 Tablespoons is labeled as 1 serving. It has 75x more lignans than any other plant food, and the lignans are power properties.
There is a flax smoothie recipe on the bag and a flax pancake recipe on the bag too. You can also substitute as follows: 1 egg = 1 tbs flax + 3 tbsp water / 1 tbsp margarine, butter or oil = 3 tbsp flax
For more recipes, visit: www.flaxusa.com
I love mine and put 2 tablespoons in my kale/blueberry smoothie each morning.
This is the end of my flax infomercial.
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EnglishRose...Yes, you can take the supplements but she said having the "real" thing is a better deal.
Inspired..I am additcted to Flax Seed...Love it! I am also doing well with walking every day. I don't want to have to stop for six weeks after surgery. Yikes! That will take me out of my mental game. And then it will be hard for me to start back up again. Ugh! Such a looooong process!
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Inspired.... I think everyone's reeling in shock over the 12 miles!!! I know I am!
Granted I've never been much for exercising but that seems like a VERY long walk. When I do walk I walk around my block, which is a little misleading as my 'block' is a little over two miles long, and I always thought I was doing good to get that done! I hurt my lower back when I was thirty so I've had to learn to take it easy on it, but if I hadn't I still don't know if I could do 12 miles!! Wow!! That's really impressive! -
I used to cry all the way home from the gym, as I don't like to exercise ... but know the value in it, I know no longer cry on the way home (sometimes I just complain a little in the morning before going, lol). It now makes me happy afterwards. I'm always so happy when I get home and done with the gym for the day. I never exercised until last June, 6 weeks after my final exchange surgery.
I think it's something that you are exercising so soon after your mastectomy! And outside exercise, to me, seems totally so much harder than inside.
"Practical Principles of Some Lifestyle-Oriented Breast Cancer Risk Reduction"
Exercise and Breast Cancer Risk Reduction, Health and Fitness
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Good afternoon, my awesome TNBC sisters! It has been a while since I've Ben on the boards an reading through some of the posts, I miss it dearly!
Though I also posted the below information on the Brain Mets Sisters thread, I thought I'd run it through all of you as well. As you can see from my signature, I'm a TNBC (stage IIb, grade 3, Ki-67 of 75%, 3.2cm, EGFR +2 tumor) survivor of 19 months and have been having some issues that are really wearing on my last nerve!
On a PET in October, a follow-up sono in January & yet another PET in February based on the 1st PET & sono reports, there was one (now two as of Feb.) deep cervical neck nodes that are increasinng in size (both are now over 2cm) and the SUV values are 5.7 and 9.9 respectively. Now, I'm having bouts of debilitating headaches, nausea and bizarre dizziness that involves a "full feeling" in my head. Sometimes, I really don't feel sure on my feet, can't type (I'm typically an almost flawless typist) and can't find my words very well. At first, I wrote the latter off to chemo brain but it is undeniably different. I've had a couple of dizzy spells during which I had to grab whatever was near me or I was sure to hit the deck. I know no one is exactly the same but was wondering if you had any of this other stuff going on as well.
My Onc still hasn't biopsied the node(s) and now wants to wait until April and see if they're still there...& I'm frustrated as hell. I know - without a doubt - that something is wrong and am seriously considering switching doctors. I've already sent both PET scans and the sono report to another MO to review but there is nothing like "field experience" of other warrior sisters to learn from.
I'm not a paranoid or alarmist person by nature but feel this is getting just a bit ridiculous. My DH is so fed up with the delays that he's determined to just take me to the ER the next time I have an episode of any kind which, quite honestly, is almost daily now.
Waiting for your kind responses...
Blessings,
Michelle -
Hi Michelle,
Wow, you've been through a lot. Okay, I don't know anything about the neck nodes. Could a severe sinus infection cause it? I'm asking because I just heard from a TNBC Sister who also thought she had a potential problem, and had the brain MRI and everything turned up okay. But I don't know if any heightened nodes were associated with it.
Also, at the risk of me sounding stupid, have you changed anything lately? New pillow that is hard? Sleeping different? Sometimes going to be on a full stomach will lead to waking up nauseated. Have you changed anything or added anything new / new supplements to your diet? What about peanuts? Have you had those or eaten anything that could cause an inflammation? Have you been eating a lot of dairy / milk that not only causes mucus but also inflammation?
Regarding if something is wrong, I do know some Oncs like to first do a wait and see. Sometimes they feel that the time to wait and see won't affect the prognosis in a small matter of time, and sometimes things resolve themselves and keeps the patient from having to go through an unncessary procedure. But I tend to sound the alarms early, and when I don't get the answers I need quick enough, I too start looking for a different route.
If you were able to meet a different doctor, would you be able to meet the new doc before your April appointment? I've also done this before: I've shown up at my Oncologist's office unannounced (I did the 'pop-in') and got right to the source of my issue with what I was concerned about.
Also, has your Oncologist given you an idea of why that area would have elevated in size? If he is waiting, he must think that there could be another condition / reason why the size went up?
I would probably put a 2nd doctor on the books for an appointment, and while that appointment is pending, I would continue to further question your primary Oncologist and try to find out more of what he is thinking. Have all your other labs indicated everything is fine?
There is probably so much that he is looking at in total, that he feels confident in waiting. The thing is, without him explaining in more detail to you what he is thinking, it's causing more alarm for you. That's why I feel you might need to try and see him now, before April's follow-up appointment to at least find out what he is thinking.
Much love and prayers to you - I will be watching for your updates! Please keep us posted, okay?!
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Thanks Debra!
I guess I should have mentioned that they did a BUNCH of testing in October and re-testing, including sending me to an ENT, to rule-out infection. No infection has been found over the last 6 months and she has admitted that she is almost out of guesses for a non-malignant cause. On all 3 reports, the radiologists all noted that "...given the increasingly intense uptake and lack of fatty hilum to suggest benign inflammation, metastatic disease cannot be ruled out."
This is where my alarm comes in. If that can't be ruled-out and infection has been, doesn't that leave biopsy as the sensible thing to do next? Trust me, I want no part of someone getting near my neck with any kind of needle - ever. However, not knowing what these things are is seriously driving me nuts! I'm typically as cool as a cucumber in most situations (didn't even cry or get emotional at diagnosis - just let me PCP know I didn't have time for this s@#t!) but admittedly, this having gone on now for 6 months has led to some stress.
It's not anything particle to me, I know...too many of us know the stress this insidious disease can cause the calmest & strongest of women. -
LadyMiz, What you are describing regarding your neuro symptoms are scary. Even without BC, they would be scary. Anyway you can get in and see the PCP? I saw mine with complaints of increasing forgetfulness and he ordered an MRI on the spot. Also, Your DH could be right on track as far as going to the ER the next time you have any type of symptoms. Squeeky wheel gets the grease....so start making a little noise and be forward with what you need. Sometimes our physicians forget that we are educated and continually striving to get the best care for ourselves. Good luck to you. Come back and let us know how things turnout. We care.
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Did she mention what she is waiting on? I mean, if she is running out of non-malignant things, 7 months from beginning of symptoms seems a long stressful time to wait. I would want to expedite things at this point in time. You need clarity and information. The lack of information is what worries us. Once you know what is going on, you can then formulate a gameplan if it comes back as something to worry about. Could it be lymphedema in that area? Also, have you recently bought a computer with a glossy screen? Those can cause debilitating headaches and nausea, although I do understand that you also have an increase in the size of those nodes. Could it be a new detergent that is causing an inflammation?
When is your appointment in April? Is it early in April? What did those other docs say so far, the ones who you sent the information to? I would try to reschedule with your Onc for an earlier appointment, given what you have said. Before that, are you able to put ice on it to see if it subsides? I know that's not standard protocol, just trying to help think of things that might resolve this. It makes me a little concerned, that she thinks she has ruled out the majority of non-malignant triggers, but still has you on a wait. And hopefully, much prayers are going out to you that it's something benign, even an outdated eye prescription can cause some problems, or possibly vertigo. Perhaps a severe allergic reaction to something? I'm still thinking along the lines of sinus infection or allergy infection.
You know, go with your gut. It really helps navigate when we think something is wrong. We have intuition for a reason, so if your gut is telling you something is off, then I would investigate further, sooner.
Hope I helped a little! Stay vigilante until you get your answers!
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NavyMom - thank you for the validation of my concerns. This has definitely been wearing on both of us and I feel worse for him than I do for myself. He HATES not being able to "fix" everything, like most men.
I've sent the reports out to a friend's MO and will see where that leads. In the meantime, I think you're right about the "squeaky wheel" and will just go to the ER when something happens again.
I will most definitely be on here more so I will keep y'all up-to-date.
xoxo... -
Inspired - thank you for your thoughts. I'm waiting on a response from the MO I sent the reports to so we'll see...
My appointment is 22nd, so not early April. I too was hoping for infection but so far, I've had all the tests they can think of and to no avail - no infection. Oddly, the nodes are deep in the neck so I don't feel them when I touch my neck and since they aren't enlarged with iciness or infection, they're not hurting, which in this case isn't necessarily a good thing. They aren't painful at all & the scans were the only way we knew about them at all. I had just been unusually tired and "cotton-headed" so they did that 1st PET in October. The ENT they sent me to ruled out allergic reaction, sinusitis and viral causes.
I'm just a regular old enigma...
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I'm glad you have all your bases covered, and have a call in to the other MO - you are very pro-active, so I'm sure you will stay in front of everyone until you find out what is going on. Please keep us posted. You know some people post things, and then never tell us. I'm always reading posts going "so what happened?"
I usually assume in those cases it was great news.Have a great day!
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I'll definitely let you know...
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LadyMiz,
Not as a substitute, but in addition to the other approache that have been suggested, maybe post a question to Johns Hopkins Breast Center "ask An Expert." Web address is below. I did that when I had a question about my pathology report. I heard back within 24 hours. They prefer short questions. Briefly describe your symptoms, testing to date and then maybe ask, " What are some possible non-malignant causes of..." The responses are public. Sometimes you'll see one that says "I dont know since i haven't examined you," but often there is some helpful info or advice. http://www.hopkinsbreastcenter.org/services/ask_expert/ -
LadyMiz,
Go to PM. I am sending you a link to something! Will explain more in the PM.
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I too have done the questions to John Hopkins. They are very responsive, sometimes within hours, and they have always given me pretty clear and concise answers, and it's always been very helpful.
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Placid44 - thanks!
Debra - did you just send me a message or is there literally a private chat on here? I'm about to leave work so I can't do an IM but I will log back in when I get home.
Thank you both for your suggestions! I can't tell you how much I appreciate it! -
It was a little longer than I thought, my message. LOL - I just hit the PM button.
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Hi ladies! Thank you for the warm welcome! For an update, I thought I was going to be done with radiation tomorrow but was just told today my RO added five more. I also saw my MO today and I will be starting Ixempra with Xeloda on April 1st. Would love to wake up that morning and be told this is all an April fools joke but alas I must fight on. Hope everyone is doing well! Deyla
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Hello, Lady Miz,
Although the enlarged cervical nodes warrant concern, I am really bothered by your neurological symptoms (headache, dizziness, and nausea). I have been through all that at one time or another with MS, so know that it is very disturbing for you to be suffering with. NO - I am not suggesting MS - it's just that during the course of my disease, these types of symptoms are all considered seriously. Seems like a brain MRI would be in order, especially since it is not invasive. There are many things, besides brain mets, that could cause headaches and dizziness, and subsequently balance problems. Many benign causes, such as vascular. With all that we've been through, it's no wonder our brains get a little frazzled!
You saw an ENT - did they rule out inner ear disturbance? Believe me...that causes major dizziness and nausea. Vision problems can also cause them - especially "eye migraines".
Push your doc for more tests and answers. Stay strong -we're all here for you.
Take care ~ Shar (aka Dizzy Dame/Grandma Wobbles)
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ok ladies...4 years out tomorrow....it feels good...haven't had any scans or anything but I feel fine...the past 4 years have been good...have never felt sick except for se's from chemo and that was over a long time ago....saw my son graduate from high school and is now a senior at Ohio State...my daughter graduated and has a job in her field and has been married...my husband and I are trying to find out what life is like without the kids which has been a challenge but that is normall
just wanted to say that there is life after bc....and it can be good....yes..I still see the onc and bs and it freaks me out but it is what it is.
Love all of you from the past and the present...could not have done without you all.
so...anyojne got some good picks for me for the March Madness b-ball tournament...could use some help
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Four years - already!!!! Yeah!!!
Funnily enough I was thinking of you when the brackets were announced. (I'm sure I said way back, DH is a Purdue alum and so we watch a lot of basketball this time of year to see how the big ten teams are doing.)
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Loved your post, Titan. Bravo to you!
No help with march madness....but good luck if ya money on it!
I am feeling lucky at the moment. DH and I decided that we would start playing our state Lotto. 2 weeks ago he got 3 numbers and won 3 bucks. Last night I got 4 numbers and won $29. Yippee! Not a bad return for $1 ticket. We have teased each other about buying a house on the beach if we ever won....which sounds pretty good right now. Damn cold here in the midwest and more snow coming on the weekend.
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Congrats Titan and here's to many, many more years!!
My pick- Kansas! I am a 1988 graduate! Unfortunately, they tend to choke first round against some obscure college! But I say not this year- KU all the way!
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tijk...I have Kansas until the elite 8 and having Miami beating them..
Gilly...the Big 10 is a meat grinder....i am biased with the Big 10 but if Purdue would have played in any other conference they would have been in the Big Dance
Of course..I have my beloved Buckeye's winning it alll...but I'm going to do another bracket...went with my heart on the first one
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Congrats Titan! I'm a huge sports fan especially basketball, football, and baseball! I have Louisville taking it all they're going into the tourney hot! Good luck!
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Dra..agree that l-ville has a great team and great coach in Pitino...but just hanging on the thought of the Big 10 coming out on top this year..alot of great teams in this league...it is going to be a great tournament...will see how good the big 10 teams really are,,,,I'm so excited for this time of year...had my surgery during this time so got to watch lots of b-ball whiile I was laying around... I was up watching the Buckeye's play until 2 am i4 years ago the day of my surgery and still couldn't go to sleep...lol
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First thing's first...
Titan, that's AWESOME!!! Congratulations! I hope to be saying the same thing 2 1/2 years from now! You have a blast and keep us updated on the fun and good ju-ju!)
Shar - thanks for the thoughts. Yes, they ruled out everything ear, nose, throat and upper/lower respiratory...no dice. I'm going to push for an MRI if they don't want to biopsy yet. I think that's a fair compromise. I'm irritated by the neuro stuff too - mostly the inability to speak & function in the manner that I was able to just a few months ago & the fact that I can be typing and think I'm reading what I type properly, only to then go back and see its complete gibberish. It's the strangest thing! It's like chemo brain, only exponentially magnified & accompanied by dizziness & nausea at a moments notice.
Thank you ladies again for all of your thoughts and feedback. I actually feel bad whining about this! Sometimes, I guess I just need to hear the words (read, actually) of those who get it! Much love and only happy thoughts to all of you! -
...& Shar, I just read your bio info and we were almost diagnosed, operated on and treated at the exact same time!
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