Calling all TNs
Comments
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too cute Cocker.
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I love both those and yes, I'm Irish!
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Theresa, I have a similar TE/implant story. BMX with TE in June 2009, Chemo August to December with fills in between. Exchange and port removal in March 2010. 3D nipple tattoo September of 2011. Foobs look good, numb to the touch and usually feel rather cool. But I am unaware of it. A word of caution: Only do massage if told to do it. Your PS will advise when and how. I went to a breast Physical therapist and she did the massage and stretching after BMX. Then again several weeks after exchange.
Welcome, Deyla. So sorry for what you are dealing with. Keep coming back and let us know how you are doing.
Happy St Patricks day, ladies.
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Luv -- great news. That was the first post I saw when I signed on this AM. It brightened my day.
Mags --hope you made it home and are doing great.
Deyla -- prayers out to you.
Only 4 more chemo treatments left. I felt great yesterday -- almost like normal. It was a beautiful, warm day so I got out and did some stuff with my granddaughter and enjoyed the day. Then went to grocery (first time by myself since DH was sick). Unfortunately by the time I got home I felt like I'd been hit by a ton of bricks. Oh well, I enjoyed it while it lasted! Another beautiful day today but I think I'll just sit outside with a book after lunch.0 -
Hey Mags, how are you doing??
5thsib- same thing happened to me. I insisted on going to the grocery store by myself. Helped me feel normal to do normal things. I got through the store just fine, but when it came to check out, I was wiped. I ended up sitting on a bench for several minutes before I had enough energy to take my groceries to the car. I could barely drive home. But when I got their a slapped a smile on my face so DH wouldn't know how much I struggled with such a simple chore.
Take care of yourself, ladies. Better days are just around the corner.
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Hi Teresa008 - I didn't realise you are Irish, where are you from? I'm from Limerick. Maybe I should make the move to Canada to experience what sunshine is
. Although I did live in a Vancouver for a short time during the winter, have never experienced cold like it!Deyla - big love to you. I'm 33 aswell, diagnosed at 32, it's an awful shock to be diagnosed at such a young age with young children. You will get there, have faith!
Since last week my eyebrows and eyelashes have decided to vacate the premises. I'm almost 6 wks post treatment, they held on for the 12 wks of Taxol, has this happened to anybody else? How long will it take to grow back. I look like an alien without my eyebrows. It's a more bizarre look to me than being bald!!
Oh and Happy St Patrick's Day from rainy Ireland
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Hi Mum.....For me and many others on here, eyebrows and lashes also fell out a few weeks after Taxol ended. The good news is that they usually grow back very fast - within a couple of weeks. I used a Q-Tip and dark grey eyeshadow to "paint" on some brows, and an eyeliner pencil to draw a dark line on the edge of the eye lid to help mask the absence of eye lashes. Easy peasy. Go to eyelineher.blogspot.com for a video demo. Good luck.
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Mum- Yes! It happened to me too. Right after my mx, it all fell out. I felt so weird too. My face looked empty. It's weird because my hair grew during Taxol and the eyebrows/eyelashes stayed on. But about 4-5 weeks after I finished Taxol, they all fell out. At least the hair stayed on.
But don't worry... they come back fast.0 -
Hi Mumtobe,
I actually live in Vancouver, Washington state, USA. We've had a very warm winter this year, though. I believe it only snowed once and barely stuck at all. I have Irish grandparents on both sides but I'm not 100% Irish. I have always wanted to go to Ireland but I've always told my hubby that if I ever do get there I'm not coming back here. So I guess I can't blame him for not taking me there.
Maybe someday.I actually went and got permenant makeup a few months ago, which is basically tattooing, so I already have eyeliner on all the time.
One less thing I'll have to do later. Yay.Take care all and I'm sending out my best wishes to everyone here that needs them.
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I am home! Me and the girls made it safe thanks to my great hubby. I have several days of antibiotics ahead of me to fight the nasty infection that almost killed my new leftie... she's a fighter just like me.. bruised, swollen, and in just a bit of pain but grateful to be on the other side of this tough surgery. Now to heal and start thinking of revisions.
Maggie0 -
A few people have PM'd me asking what I learned from the nutritionist I saw last week. So here are a few things: basically, as I'm sure you all are aware of this is that you need to eat large amounts of cancer fighting fruits and veggies, broccoli, cauliflower, bell peppers, onions, green leafy veggies, berries, melons, oranges..there are too many to list.
Green tea daily is huge...2/3 cups daily. Two tbsp. whole flaxseeds that you crush in a grinder. Put n your yogurt or smoothie or salad. 100% whole grains. Not wheat.
Use olive oil, coconut oil (great in stir frys) canola and butter. No trans fats or anything hydrogenated. No cured meats like deli meats. They ar full of carcinogens which are cancer causing. Almond butter is a good choice instead of peanut butter. No sugar or refined flours. Eat only lean proteins. Beef once a week unless its grass fed, then you can eat more. Eat fish at least twice a week. Eat beans and legumes. Limit alcohol. Drink tons of water. Take Vitamin D, baby aspirin also can prevent recurrence and spread of cancer. Use cinnamon and Tumeric. Exercise at least 30 minutes a day. They suggest just a brisk walk.
She also suggested reading the Cancer Fighting Kitchen by Rebecca Katz. And Anticancer, A New Way of life by David Servan-Schreiber.
Also suggested: http://lbbc.org/index.asp. Site for breast cancer only that offers some great info. I have not been there yet.
Of course,I can't write everything but I have some handouts. So if anyone wants a copy PM me your email address and I will scan them to you.
Top of the Morning to you lassies!0 -
Mags - I am so glad you are home and on the mend. Sending healing vibes to lefty!
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Thank you Kayak & Babs, I look forward to some regrowth soon
Teresa I think you would love Ireland - we do have such a beautiful country, the weather lets us down but I guess we wouldn't have such a lush country without all the rain! Catch 22
Hope - thanks for that info, am doing my best with the healthy food and I do love fruit & veg so it's not a chore but I did have a chinese last night....at the moment I find the walking 7 days a struggle, am so tired from rads.
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Hope, thanks for the info. Re. green tea, are the supplements as good as drinking the 2/3 cups a day do you know?
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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!0 -
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,
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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.0 -
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.
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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/0 -
LadyMiz,
Go to PM. I am sending you a link to something! Will explain more in the PM.
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