Calling all TNs

InspiredbyDolce

Phyllis,

Wow ... it just goes to show you how we have to know our own bodies and be our own advocate!  I'll be thinking of you every minute on Monday!

Please update when you can, and safe travels.  You are in my prayers.  xoxo

jcolford

Oh those lovely drains - when I had mine in I was working in the kitchen and caught one of them on the cupboard pull.  The tube stretched quite far and it sort of snapped me back.  I thought my husband was going to faint lol, I don't know what I would have done if it pulled out. He's much too big for me to pick up off the floor.

Where I live the mastectomy procedure is day surgery. I was home early afternoon on the same day however I didn't have expanders or implants. Good old Tylenol#3 for pain and that's all they give. I had stronger pain pills for an ulcerated tooth.

scouser47

Al Husband, So glad  to hear you wife back home and path report ok. Your advice is spot on, I have stopped worrying until I have something to worry about !
I finished chemo 10th June and now have 3" long curls, have needed two hair trims recently to keep looking tidy. Once it starts it grows really quickly.My bonus is I have ALWAYS wanted curls .

Blessings and healing to you all.

QueenKong

Checking in to say "Hi" and see what all the TN sisters are up to. I'm over a year out of my DX and would be on my second chemo about now last year. Strange to think about. My hair is growing but lordy do I look weird. 

I'm feeling lots better and need to get my life back in order after the shake up. Where did all these papers come from? Anyone else with a messy house? How to overcome it? Anyway, messy house, meh. I need to get back to exercising after a 2 day break. The end of Summer makes me a tad bit sad.

I'm reviewing the studies about exercise, low fat diet and supplements. Getting rid of toxins and wondering if I should move to the country.

What about you? 

Lovelyface

Hello lovely ladies,  Oh I just got so emotional reading Annie's post from July when she says that she misses me.  Oh!  I am so so sorry for not writing here in a while and I am so sorry I missed all your posts.  Annie, honey, I am always around, but this time stretched out to be too long, and I will explain.  I have major issues going on with my eyes. I had mentioned previously.  It is so bad, that I am thinking of quiting my job.  I have had at least 17 - 18 vists with doctors, but I am getting nowhere.  Finally yesterday I learned that maybe it is happening due to sleep apnea and me not using my CPAP machine.  I have so much pain and distress in my left eye that it is unimagineable.  I squint and close my left eye after lunch almost every day at work.  I try to keep only my right eye open.  Glasses were checked, I treated them for allergy and dry eyes, nothing worked.  The pain in my forehead is so bad.  I think my eyes are not sleeping, literally, honestly.  Anyway, so I stay away from the computer screen when I get home, no computer, no way..... can't.  That is why I have been away.  I used my CPAP machine last night and let's see if it improves.  Otherwise, I feel that my life is over.  If I can't look athe computer screen, how will I live in this world?  The doctor says the vision is fine, but the pain, the glare, the water, what is going on?  I yelled at my eye doc yesterday, saying don't even try to look at my eye with your stupid lights, what is the point when you can't even tell me what is causing my pain and discomfort.

Ladies, I haven't been able to read many of the above posts. I will try to read only a few every day, but I just want to apologize and say to you all, I will always come back.  I hope I will always have vision in my eye to be able to see all your posts.  Love you all, and Annie dear, thank you so much for thinking about me.  Hope life is good to you and yours! 

aeryno

kittykate78 - I do wish I had had a chance to get my teeth cleaned prior to chemo, not because of any problems but I REALLY don't want any cavities! Unfortunately, I was scheduled for my surgery first and then chemo but on day of surgery (lumpectomy) they discovered the cancer tracked out along the biopsy line. That was a Thursday and Monday I started chemo so I didn't get to go.  

 

My eyebrows and lashes remained through the EC but started thinning after a few of the Taxol treatments (I want to say #4 maybe?). It took a few tries but I found the right color combo of two eyebrow pencils and have gotten much better and filling them in. Luckily some of the brows are left so I have a guideline.  I also started using false lashes this week which is actually fun! You shoud have seen me the first day - they were quite askew and no where near the lash line but by the third day I started getting them right on the first try.  I have a couple of different pairs just to mix it up. ELF has a pair for $1 at Target and I have those and a few others. Have fun!

 

I would say eat your favorite foods before you start. My taste buds were REALLY off during EC and not as much with Taxol but I can't wait until it returns to normal.

I continued to exercise, though toned down like you plan. I love to run and am fairly klutzy so I opted to walk instead of run to avoid falling and getting cuts or scrapes which could get infected, etc.  I continue to do light weights and use my elliptical and I find it really helps combat the neuropathy.  I think Yoga and Spinning would be great for you!

My "chemo class" nurse advised against eating at salad bars and potlucks because the food sits out and lots of hands get into it and you want to avoid germs.  They recommended washing fruits and vegetables thoroughly (a Salad Spinner is a good idea) and if you want a salad at a restaurant make sure it's at a reputable place (i.e. avoid places with ratings that aren't an A) again to avoid any contamination.  My doctor didn't say anything about not drinking though I've definitely reduced it as I've read it's better since the chemo is so taxing on your body anyway.  I've been having a glass of wine once a week and one beer on a Friday from time to time just to be safe.  I found with the EC though it all tasted weird so I didn't want to drink it anyway!

ALHusband

2 of 4 drains are out now. The other two will most likely come out on Monday! Woohoo!

jcolford

Yay AL! Definitely worth celebrating.

Gramof2boys

Hi, I am new here, not exactly where I want to be. I have been dx'd with TNBC,stage 3, grade2. I'm almost finished my workup and will have port placed next week. I'm receiving chemo first then surgery. I believe I will get Taxol first for 12 weeks. I'm a RN at a fertility clinic and am planning on continuing to work. Can anyone give me some hints to try and work through this? I will probably have my treatments on Fridays to give me the weekend to recover. Thanks!

jcolford

Welcome Gramo2boys, sorry you have to be here but at the same time you won't find a better place to share the ups and downs of this cancer journey we are all on.  It's awesome that you can have your treatment first before surgery. I wish I had done that. It's the only way to know if your treatments are working without reoccurance.  

I was a wimp (plus I had an excellent health and disability plan) I stayed home from work for over a year and have only just returned in August. I found that the first couple of days after chemo I felt great while the steroids were working then about day 3 or 4 it would hit and I would feel crappy (Not ill just blah). I hear that the 12 weeks of Taxol is easier to handle with less se's.

You will soon meet many more of the ladies and gents that are on this thread, feel free to ask or tell us anything.

Cheers,

J.

5andcounting

Chemo finished yesterday:). MO mentioned I could try tamoxifen as one of my path reports said I was 1-4 percent positive. The other said zero and it was from the core biopsy. I'm thinking I don't want to bother w it. He also said I could do xeloda as it had shown some promise in tnbc to prevent recurrence. He wasn't excited to recommend either but was sharing options. What are your thoughts?

CatWhispurrer

I haven't posted in awhile and was out of touch for a few months.  It is so sad about Inmate.  She helped so many on here, including me.  Fly free sweet angel.  Also sad to hear about Luv's struggles.   Welcome to all the newbies.  You've found the right place.  Warning, this is long - I can't ever seem to write a short message.

I am happy to see a lot of my friends still around.  I need to ask some advice.  I finished chemo last July and decided to go to a different BS that seemed to have better follow-up screening.  My BS had dragged his feet about getting me to surgery (over 2 months!) and could have cost me my life as it was starting to affect my lymph nodes and had doubled in size.  My MO actually had to call my BS to say get me to surgery ASAP - enough waiting around!  The BS was also talking about going to only a mamm once a year.  I was not comfortable with that.  I feel we (TNBC) need to be followed closely for the first 3-5 years when our chances of recurrence are highest.   So, I went to a new BS which had great screenings, find out results same day, etc. but it was a 9-hour day.  Yes, 9 hours.  1.5 hour drive to/from and 6 hours waiting around.   On top of that, I found a new lump in righty about a month ago and call to make an appointment and they said it would take 6 WEEKS to get it looked at.  That is unacceptable to me. 

So, long story longer, I went back to original BS because I didn't know what to do.  It still took 10 days to get seen.  What does it take to get prompt attention when you are at high risk??!  Anyway, I saw him several weeks ago and he did an ultrasound and says it looks like a cyst.  The mass was about 8 mm in size.  Since I was due for my 6 mth mamm, he scheduled it to have someone else take a look, but again, it was another 3 week wait.  I got anxious so called the mamm place and asked if they had a cancellation.  They got me in today.   I also called my MO and got to see him this morning.  I LOVE my MO.  He is totally supportive and said he would talk to the BS and try to get him on the same page as me.

Anyway, my MO also felt the lump.  So, I went to the mamm.  The radiologist says he sees nothing.  Then, he had an US done and didn't find anything but maybe a 2 mm spot.  The US technician seemed very inexperienced and, after taking off the marker where the lump was, kept asking me if this was the place.  How the heck could I tell laying down with a big wand over half my breast (I'm small LOL)?

Now what?  My MO is supposed to call me back on Monday after talking with the BS.  I do not feel great about the mamm.  I have dense breasts and don't really feel mamms do any good.  My sister found her own cancer after she got an "all clear" on a mamm.  I found my own tumor too.   The radiologist only said that it is "probably" not cancer but since I can feel a lump (insinuating nothing is there), I should get another US in 6 months!  Holly sh**t.  My BS and MO both felt it too!  IF it is cancer, it could spread everywhere by 6 months.   I am really feeling anxious now.  I know my MO will insist on any test I want.  I just don't know what to do.   Any suggestions out there?  What things should I consider?

As a side note, the other place that I went for my last mamm totally messed up my leftie/lumpectomy side.  She pulled and squished so hard (me crying through it all in pain) that now I am on pain med's.  She obviously ripped scar tissue and/or nerves.  The lumpectomy area now hurts and burns constantly as if I just had surgery.    The first mamm I had after treatment, it hurt for about 2 weeks.  The last one was 6 months ago and I have been pain-ridden since.  Has anyone else experienced this?  The person was so rough and uncaring.   Thankfully, today, my old place for mamm has a great technician and she was very gentle and stopped when I said, otherwise, I told them I would not go through another one on that side.  Just got home and took a pain med, but I really need an Ativan!

CatWhispurrer

I also love seeing all the kitty lovers and talk about how they help us through these tough times.   I am up to 7 cats of my own, and 5 fosters.  The new ones are taking a lot of my time - 3 are Felv positive.  I have a couple special-needs too.  I have a one-eyed kitty.

crs - I was zero percent but others on here will hopefully help you as a few of them have taken tamoxifen.  My feeling is that early on, you should fight this beast with all available guns.

CatWhispurrer

Gramof2boys - I worked part-time through chemo but found that about 4-5 days after chemo was the worst and took those days off.   I had chemo on Mon and Fri-Sat were the worst.   You will find what works (pun intented) for you.  Unlike most others, I had a worst time with Taxol.   A-C was easier for me.  I had neuropathy for almost a year after Taxol.  I still need to get up slow in the morning and get my hands/feet moving for awhile until the "thickness" feeling goes away but at least they aren't numb anymore.

Lovely - I sure hope it is only CPAP use.  That is awful.

AL - Yay for 2 drains out!  Do let us know how she is doing.

Queen - I am still trying to dig my way out of all the house and yard maintenance that went by the wayside during treatment.  I'm slowly getting there.  I am trying to exercise more, usually 2 miles every other day and some Yoga.  I am taking Metformin to keep insulin down thanks to my MO when I told him about the study.  I also modified my diet.  I was already a vegetarian but have been cutting out all carbs and most sugar.  Well, I lost TOO much weight and was down to 97 lb.  My MO made me cut out half the Metformin and said that if I didn't gain some weight back, he would recommend stopping Metformin completely, so I added back some carbs and am up to 102 lb (with clothes) now  - tee hee.   I already live in the country on 30 wooded acres and love it!

placid44

Catwhispurr,



Your post gives me hope that my neuropathy may still go away. I am 8 1/2 months post-taxol and I still have numbness in all toes and the bottom of my feet. I really haven't noticed it improving. Did yours improve all at once?

CatWhispurrer

Placid - I don't know exactly when it went mostly away.   I think it was more gradual but since I had been living with it, I didn't notice improvement really until one day it dawned on me that I could get up in the morning and I was able to move my fingers and not fall over.   I think it happened pretty fast once it started improving.  I still am a little stiff right when I get up in the morning but it quickly dissipates.

Cocker_Spaniel

Something to brighten your day and make you laugh!!

Tazzy

Oh! Annie.... I am laughing so hard at your post.  

Not posted much these days but have read all and thinking of you all.   

Sorry the newbies have to be here - best place you could land though through these crappy times.   You will receive the most wonderful support.

Love and hugs to all xxxxxxxxxxx

schatzi14

placid44....It has been 18 months since Taxol and I still have the numbness on the bottoms of  both feet and all toes. It is the same as it was in the beginning BUT I have NO pain so I don't really worry about it. It's weird tho...feels like there is a piece of kleenex or silk inside my shoe when I wear them. With flip flops, there is no difference from before.

InspiredbyDolce

Cat Whispur:

I had a similar experience, in that I had something that I felt and all three docs said it was scar tissue, but I insisted on mammo/us.  Both showed nothing, but Radiologist said it seemed like a piece of fat.  I had an MRI 3 months later, as was put on a short-term follow-up to double check it, but I insisted on an MRI.  MRI was read two times and they ordered a new technology called Diffusion Imaging, it's an addon to the current MRI standards, uses water technology to assist.  That came back as a 98% probability of nothing, birads 3, which is a normal response on something like this with a history of bc, and I verified that by posting a question at John Hopkins online.  My BS who seems to be of a laid back fashion, put me on a 4-month come back in to see him,  and the MRI they said to come back for a short-term follow-up with an u/s. 

At that time I took action.  I was not going to be waiting around, when I could get clarification now.  I went to my PS who agreed to do surgery and send tissue to lab.  He needed to exchange my implants anyways, so I knew I could work out something with him.  He sent 5 areas of scar tissue that he removed and sent them to the lab, but told my husband in the waiting room that everything looked normal.  The lab also reported back that it was normal.

I just feel for myself I wouldn't have closure without getting that tissue to a lab, so I went the path of least resistance, which was my PS.

I do think in your case it is also probably nothing, but do consider getting it biopsied or request a MRI with Diffusion Weighted Imaging for immediate scheduling.

I really feel you do not have a recurrence, but keep pushing forward until you get closure on the issue.

My BS has me on a protocol that I will have a u/s and MRI once a year each, with scheduling at every six months, so that way surveillance is every six months.  He agreed to this protocol for me, but I did have to bring it up and approach him about it.

CatWhispurrer

Debra - Good thoughts about tests to ask for.  Thank you.   The lump is in my other breast so I know it isn't scar tissue.  The doc's felt the lump too but nobody can tell me what it is.  The US looked like "probably" a cyst, so a biopsy or MRI should let me know for sure.   I am definitely not going to wait and see if it gets bigger like my BS suggested.    I will talk to my MO tomorrow who is very happy to order tests.  I have never heard of the Diffusion with MRI so will also ask about that.

InspiredbyDolce

The Diffusion with MRI main goal is to prevent unnecessary biopsies, and give a clearer more accurate picture than the MRI.  It's an add-on at the end, and only takes like 5 more minutes.  The center told me that the technology is so good that the Radiologist I saw now orders it for all his MRIs on those with bc history.

InspiredbyDolce

CatWhispur - can you give me a sample of what you eat during the day if you cut out all carbs?  I do low-fat low-sugar, and since animal meat is considered to have carcinogenic implications (in some research) I'm trying to really only eat a tiny amount. What do you eat in place of this?  I also do not do cheese and dairy.  The carbs I do eat are whole grain or whole sprouted grain though.

InspiredbyDolce

CatWhispurr ... what did you say to your MO, did you take him any info for the Metformin?  I am on Metformin as well, but my MO said no, so I asked my PCP for it, and now I have to tell my MO what I did next month.  My husband said he already knows, as my PCP would have sent him the update on me, plus they are part of the same health group company .... but then why would my PCP tell me to be sure to let my MO know about my labs?!  So I'm not confident that he did fax that over, and if not, I have some explaining to do next month, and he probably won't be too happy with me.

InspiredbyDolce

QUEENKONG - CONGRATS on your 1Yr!! Loved your update and so happy to read that you are doing well!

For messy house do this:

Rather than do room by room (this can leave you too long in one area), instead start with an overview.  Go room to room and pick up anything that will get thrown out.  Water bottles, packages, whatever. Then put anything away that can get put away easily, such as book back into bookcase, lipstick back into drawer, etc.  Pick up.

For those papers, don't go threw them yet.  Wait until you have a clean work area and a clean presence around you, it will make the job easier.  Just collect all the papers and put them in one neat area tucked out of the way. 

Then get the laundry caught up.

Next move to the bathrooms, and get those done. 

Then move to floors, because this is the final step of the bathroom, and as long as you have the floor products outs, use them on all the floors in the house.  I also highly recommend the Shark Steam Mop.  I got it for $49 at WalMart, no need to pay $100 at Bed Bath and Beyond. Just add water and it seams it so well, you won't believe it until you use it. 

Then go back and windex and dust.  If you already had the windex out for the bathroom, use it at that time.

Now vacuum. 

Somewhere along the way, I missed the kitchen. I always like to start with a clean kitchen, so get your kitchen clean first, at least clean enough to where the dishes are off the counter, the sink and counters are clean.  You can organize cabinets another day once the whole house is back together.  The tip here is to get it all clean, so you can feel less stress.  Then over the next few weeks you can take a special area to concentrate on, if you need to do more, such as a special closet project, or cleaning out the pantry, etc.

I hope this helps you a bit! Leave TV on so when you are doing this, you don't feel lonely or like you are missing out on anything.  Entertain yourself while cleaning.

CatWhispurrer

Debra - I am originally from Wisconsin, so can't cut out the cheese and I love beer, so those are my downfalls.  I switched to N/A (non-alchoholic) beer mostly but do like a regular beer sometimes with football or a movie!

Anyway, I have added a lot of nuts, seeds, and beans for the protein.  I also like to eat Greek Yogurt which is high in protein.  If you buy Plain, it has less sugar and you can add fruits (I keep a bunch frozen).  Makes great smoothies too.   So typical meals are

Breakfast: old fashioned oatmeal (less processed) with raisins, cinnamon and Unsweetend Almond Milk - it has more calcium than milk and only 30 cal per serving.  I use it in recipies too and for smoothies.    I have this most mornings - my colesterol is great!  Other mornings, I will have an egg with mushrooms, onions and spinach.  I usually try to have a fruit too like orange or banana, or egg mixed with salsa which is easy and tasty.

Lunch:  Big green/red, leafy salad with arugula, spinach, kale, cabbage, cucumbers, tomatoes, nuts (raw almonds or cashews), raw pumpkin seeds, and of course, cheese.  You can throw other things you like like mushrooms, onions, broccoli, etc. to change it up.    I use (or make) a greek yogurt dressing.  Bolthouse makes some great Yogurt dressings - look by the produce/lettuce.   I try to have this every day.  For more protein you could add some tuna or chicken breast but I don't.   Maybe some low-fat cottage cheese on the side.

Supper:   Usually a big chili bean burrito with a low-carb wrap.  More green lettuce, tomatoes & cheese.  Sometimes, I add corn or spinach on the side.   I love spinach hot or cold and try to eat some every day.   Other suppers might be spagetti over spagetti squash (instead of noodles) with a vege side, Feta/tomato/mushroom/pesto baked on a low-carb pita bread.  I love chinese stir-frys too.  I eat vege burgers once in a while (with no bread) and use soy bacon for BLT's or soy sausage for pizza. I don't buy bread anymore.  Any sandwich you want, you can use low-carb wraps or pita - some of these add flax or omega-3.   I just had a tuna wrap with greens, tomato, cheese, curry powder and greek yogurt dressing.  Yummm.  I eat some tuna and salmon but otherwise don't really like fish.  Baked sweet potato fries with olive oil and cummin are yummy too to go with a meal or wrap.

Snacks are protein bars with almonds or peanuts, greek yogurt, fruit/almond milk/greek yogurt smoothies (can throw in some flax seed too), popcorn, or a mixture of almonds, pumpkin seeds, cashews and raisins. 

Hope this gives you some ideas.  Glad to help if you have other questions.

CatWhispurrer

Debra - my MO is very open-minded.  Right from the start, I take him articles and new research on TNBC.   He teases me if I show up with nothing.   When I presented him with the Metformin research and trial info, he was supportive.  I told him I would rather take it under his supervision than to have to go into a blind trial.  So I started slow (over 6 weeks) and worked up to 850 mg twice a day.  I had no issues starting slow like that.   I am now down to 850 mg once a day because of my weight loss.

Stupidboob

On your 3/4 month check-ups do you always get blood work done?  If not how often do you all get it?

CatWhispurrer

MY MO does bloodwork every 6 mth.

Cocker_Spaniel

All those ladies who knew our LuvRVing (Michelle) will need to know that she is a very poorly lady at the moment.  Only eating tiny little amounts and is now unable to walk at all.

Luv was so special to us all and was so very kind and helpful to me when I was first diagnosed. She helped me so much in so many ways and was a mind of great information that helped me on the road to recovery.   

Keep fighting LUV. We love you and are thinking about you every day. Annie xxooxx