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Calling all TNs

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Comments

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited April 2015

    Thanks Shari! I agree about welcoming the birthdays now! My dad will be 75 in June and he's so worried about showing his age and gets pissy when we remind him he is getting older. He colors his hair and eyebrows. He wears long sleeves and jeans all the time so people won't see that they're hairless. He gets annoyingly excited when people tell him how young he looks. Ugh!! He also swears he's not balding but he is. I love him to death but it's annoying how he acts! I'm thankful he's healthy though, but I'd be celebrating 75 instead of dreading it! I'm hoping to just make it to "old" age!!!

  • MomMom
    MomMom Member Posts: 334
    edited April 2015


    Oh my - I posted the questions about short hair thinking it was the Hair thread, but what a delightful bonus to get feedback from you ladies on the hair issue.  Thank you one and all!!  You continue to be such a wonderful resource on all issues.  After seeing my hairdresser yesterday we agreed that keeping it trimmed until such point as my "old" hair comes back is a good idea.  And Yes! I love, love the fact that the short hair requires almost no time at all.  My previous hair routine could last as along as 40 minutes!  All of you ladies look marvelous.  It's incredible to see how far we've come.

    SA08PG, Will  keep you in my prayers that you will weather the antibiotics well.  Shari, you are always in my prayers.  Please keep us posted on your treatment plan. 

    Sylvia - 10 years.  Wow!!  That is just so wonderful.  May we all reach that milestone.

    Cocker - meant to say earlier that I agree with your assessment that the woman in the support group who seemed to monopolize the meeting was probably just plain scared.  It's so hard to know how to react when faced with such news and hearing mostly negative information about TN.  You need time to process and gather information.  The newly diagnosed have my heart. 

    Paula

     

     

     

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015

    MomMon I admire your hair every time I come on here and your smile.  I have always had red hair, very wavy and  wherever I combed  the waves in the morning they would stay there all day. After chemo it came back in as straight as with silver tips and I miss my own colour and the waves although like you it is easy to do in the mornings.  That is a big disappointment because I miss my hair as it was.

    SA8 that's an awful lot of antibiotics that you have to have.  Praying for no side effects and hoping they work for you.

    Shari hope you get all those questions answered to put your mind at ease.  Sending big warm hugs and will be in your pocket.

    LUV haven't heard from you for a while.  How are your tummy issues now, hopefully much better.  Also happy belated birthday wishes.  I also love birthdays now.  Never gave them much thought before now I am grateful for every one that comes around.

    Have a great day ladies.

    Annie  

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited May 2015

    Hi Annie! Thanks for the birthday wishes! My stomach is better. I just have to accept the fact that I have IBS and will have to live with loose stools. Some weeks I feel great with normal BM's, and then I'll have a flare. I never know what's going to cause a flare so I eat almost everything I want, although I may suffer consequences later. I always keep the Pepto and Gas X handy!Haha!!

    Hope everyone has a good weekend!

  • ALHusband
    ALHusband Member Posts: 342
    edited May 2015

    Ladies as you may or may not know, there has been a lot of chatter over Metformin and Vitamin D as possible help to prevent recurrence. Maybe they do. Maybe they don't. I guess if I knew for sure I'd be kinda rich. But I saw the attached today, and I know it doesn't pertain to breast cancer, but it gave me some hope that Metformin and Vitamin D3, both of which my wife takes, just might be helpful!

    http://www.sciencedaily.com/releases/2015/03/15032...




  • JAN69
    JAN69 Member Posts: 731
    edited May 2015

    ALHusband, Thanks for the link. Sounds very hopeful. Thinking of you and your wife. Jan

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015

    ALHusband as you know I don't believe that metformin helps with breast cancer. There are no studies to suggest it helps other than the studies that suggest that it doesn't.  I know people who have taken it and had a recurrence but equally I know people who take it that hasn't had a recurrence. With regards to Vitamin D I don't believe many people get enough sunshine nowadays as the threat of melanoma is so real especially in NZ/Australia  where the rate of melanoma is high. Where once we used to lay out in the sun (me as well) we don't do this anymore because of the fear of melanoma.  The bit that worries me is where people take more than the recommended dose thinking it will help them more, it doesn't.  There are no studies where it states that Vitamin D will help breast cancer but I think if it makes you feel better and you feel it may help, then it won't hurt to take it especially if you take the correct dose and not try to exceed this. If the experts say we should drink red wine or eat more salt on our food or eat McDonalds more to prevent cancer then we would probably try this because we are fearful of a recurrence. People think raw food or smoothies are the answer but it isn't however, they are good for you and won't do any harm.  I think keeping our immune system healthy by exercising,  eating a diet rich in fatty acids, green leafy vegetables and a small amount of lean red meat often, getting the right amount of sleep and avoiding stress is the answer.  Unlike Metformin or Vitamin D which I don't believe helps,  I think stress is the key because it weakens our immune system and causes all sorts of problems that may affect our body cells.  I know for a fact that I was highly stressed with a personal problem before I was diagnosed, coupled with the fact that I couldn't sleep because of worry, had a very demanding job,  wasn't hungry and wasn't doing the things that my body was used to doing. That old adage of "a little bit of everything in moderation does you good" is wise because we have to live and be happy to keep our immune system healthy. I think AL you have to listen to what your body tells you and what you believe in is what's right for you.   If you feel that Metformin or Vitamin D is right for your wife then take it and keep believing that it will help. 

  • PeggySull
    PeggySull Member Posts: 368
    edited May 2015

    My thyroid doctor who is well respected has seen positive results with Metformin In several different kinds of cancer, not just BC over her many years of practice. After my exhaustive review of the literature I gave these studies to my gynecologist who agreed it was warranted. So, with research and professional anecdotaleevidence, I continue to take Metformin with no negative side effects and with regular blood tests of liver function, which continues to be normal.

  • ALHusband
    ALHusband Member Posts: 342
    edited May 2015

    My feeling on Metformin is that many have said it helps...some have said it doesn't help...but no one has said it hurts. The day someone respectable says it definitely hurts is the day I recommend that Kath stop it immediately. It has made it through phase 1 and phase 2 clinical trials. There is likely something to it if it's now in phase 3. As Kath's doctor put it, "It's an old, benign drug. So even if it doesn't help, it probably won't hurt." Seems to be lots of upside...little to no downside. Same with Vitamin D. I think it's important to keep the levels in the normal range and certainly wouldn't want to exceed the normal range...but stay at the higher end of that normal range. Cocker I agree with you in that if they said eating dog poop definitely prevented cancer we'd have people with clothespins on their noses chasing dogs around with buckets.


  • meadow
    meadow Member Posts: 998
    edited May 2015

    lol!

  • JAN69
    JAN69 Member Posts: 731
    edited May 2015

    Good one, ALH

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015


    AL you did make me laugh with the dog poop and I guess we would try anything however unpleasant if it would work but I hope it doesn't come to dog poop.  Your right if Kath's metformin is not causing any problems then it doesn't hurt to try it.  I just wish they could come up with some positive proof that it may work because the phase 1 trial didn't bring anything concrete  to the mix.   The phase 2 & 3 trials are targeting prostate cancer but unfortunately not breast cancer. If my HbA1c was to increase then I would probably try it but not until then.   All those billions spent on breast cancer and still no cure. I've never hated anything in my life until now and I hate the word cancer with a passion but I hate the word recurrence even more.

  • adagio
    adagio Member Posts: 713
    edited May 2015

    Cocker - I agree with you about the word recurrence - nasty word indeed!!!


  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited May 2015

    Agreed Cocker!! I have my three month checkup on Monday and the nerves are already kicking in. Although my Onc always says I'm doing well, I want to say if I'm doing so well then why the hell do I have to see you so often?!!! I know the answer but I still want to say that to him every time!

  • ALHusband
    ALHusband Member Posts: 342
    edited May 2015

    Cocker. Phase 3. https://clinicaltrials.gov/ct2/show/NCT01101438 Breast cancer...not prostate cancer.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015

    AL my apologies you are right with the Phase 3 clinical trial.  It is Phase 2 that is for prostate cancer.  But if you go to near the bottom of the link where it says acidosis and look this up and see how it changes cells.   I would be interested in your ideas about this.

  • t100angel
    t100angel Member Posts: 22
    edited May 2015

    Hello!

    I was diagnosed with Grade 3, Stage IIA, IDC that is TN on April 16th of this year. I'm still undergoing testing to determine the best treatment plan. They want to start my chemo now rather than waiting for surgery.

    This week has been busy week since I work swing shift and have/had appointments before work each day.

    Tuesday I saw the PS to confirm I'm a candidate for the DIEP reconstruction, and he said yes as long as no radiation, or at least minimal after effects of it.

    Wednesday I had a CT scan and bone scan done. I had to go home early from work as the stuff they gave me made me nauseous about 4 hours after I got to work.

    Thursday (today) I had a lymph node biopsy. They found a questionable node in the ultrasound, and decided to do a biopsy to be certain it hasn't gone into my lymph system.

    Friday I see my MO for the scan results and I hope to setup a schedule for chemo and a time to get my port inserted.

    Next week I go back for my genetic testing.

    I'm in a great frame of mind, but I'm concerned about being single and going through all this treatment alone. I do have a roommate (adult son) but he work 12 hour shifts at manual labor and is exhausted when he gets home. My partner lives 150 miles away from me, so he isn't readily available to help. Any suggests on how to prepare to be single while doing chemo? Preparations that I can do before first treatment?

    Thanks,

    t100angel

  • simplelife4real
    simplelife4real Member Posts: 341
    edited May 2015

    Welcome t100. I'm sorry to hear of your diagnosis, but I'm glad you found this thread. One thing I would highly recommend doing is joining the chemo thread for the month that you start chemo and stick with both that thread and us. You will get a lot of useful support from those two threads in particular.

    In terms of prep for chemo as a single person, the first thing that came to mind for me was having some way of being able to prepare simple meals and snacks. Chemo tends to mess with your tastebuds and your sense of smell. Sometimes cooking smells can make a person feel nauseated. It would be good to think about super simple things you can prepare quickly and easily. Things like canned soup, peanut butter on toast, string cheese, and frozen microwavable meals come to mind. Everyone is different it terms of what appeals to them to eat during chemo, so you will probably come up with your own list of easy peasy foods to prepare. You will probably be doing chemo for three to six months, so it's not really feasible to have that amount of food on hand before you start, but it would be helpful to think about and gather things that you think might work for you.

    Let us know how your appointment with your MO turns out on Friday and what chemo protocol you will be following. We are here for you.

  • t100angel
    t100angel Member Posts: 22
    edited May 2015

    Thanks so much for the reply. I had thought about the food situation and was thinking of doing a bunch of easy simple crockpot dishes and freezing them so I would have some things planned out. Glad to know I was thinking along the right lines.

    I'm really ready to start this process. Having waited for a month now to know what treatments and when has been aggravating to say the least.

    I will post an update tomorrow about the MO visit.

  • Tobycc
    Tobycc Member Posts: 578
    edited May 2015

    You won't be alone in this Angel, you will find tons of support. Simple is right, to join the chemo thread when you knowl what you will be on.

    I have gained a much greater sense of my body when this process started for me in August. Now I really listen to it. I rest when I am tired, let my emotions go when they needed to, and asked for support and help. That was really tough for me.

    On my chemo thread there is a single mom with a boy of 7. She got through it with grace, and a lot of humor!

    I think certainly planning for all the meds you will need, and mentally preparing is what you can do now. Sounds like you are certainly doing that!

    I reached out to Cleaning for a Reason, and applied for free maid service and got it. That was amazing. You apply on line, get a letter from doctor. It was once a month 4 times.

    My taste buds changed with two different chemos. When nauseated, often the thought of eating was way too much: BUT I always felt better after I ate homemade chicken soup that DH made and I froze in small batches. I also froze a LOT of organic chix breasts in 4 oz portions: I could make a salad, sandwich, or just snack on it. I also did smoothies with protein powder with berries, bananas, etc.

    I also work full time, and I did not share with my staff (except 2), and still have not. I only missed 2 days of work due to SE- side effects.

    Keep us posted, and again, so glad you found us. You can do this! All of my "tips" and a TON of support, encouragement comes from these threads

    K

  • t100angel
    t100angel Member Posts: 22
    edited May 2015

    Thanks Toby. I'm sure I will get through this. My mother is a double BC survivor. In 2009 I tattooed a pink ribbon on my thigh with "Living Beyond" above it, and "the Cancer" below it. Her name is on the top ribbon, the date of diagnosis on the top back ribbon, and the bottom back is blank as she is still alive. She has shown me how to be strong and confident in this process. Since I am single (and mostly alone) I plan to get a small freezer and start stocking up precooked homemade food for the times I don't feel up to cooking but need food.

    I will post more when I know more.

  • slv58
    slv58 Member Posts: 486
    edited May 2015

    Welcome Angel, you have found a great thread for support, knowledge, humour or to vent. The ladies here are wonderful and totally understand what your going through. If your ever lonely and need to talk, come here!

    Wishing you luck at your MO apt . Make a list of questions and see if you can take someone to hear all the answers- it can be overwhelming.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015

    t100angel you will never be alone while you have all of us.  It's very sad that you are joining us but ask away and someone will be able to help or advise. 

    The advice about freezing some food will be excellent for you and will be simple to heat up.  Make sure you drink plenty of fluids and have some dry crackers available if your tummy feels a bit wobbly.   I didn't, I was ravenous all the time and ate everything I could.  I found melon was refreshing and very light,  if you like it.  Take your meds whether you need them or not as it's harder to get on top of nausea once it's there.  If you suffer with constipation like I did it pays to take a stool softener the day before you start chemo.  And yes chemo does affect your taste buds.  I still can't eat anything that is citrus.

    Take all the help you can get from friends, family and Toby's suggestion of trying to get a cleaning service come in is excellent.    

    I also worked full time but it was easier for me as my boss set me up at home on my computer.  Rest as much as you need and try to get in a little bit of exercise, it really will make you feel better.    

    Hopefully your lymph node will be clear and all will be good when you see your MO today.   Take a notebook because you may not be able to remember everything they tell you and there is a lot to take in.  

    Good luck today and come back to us with any questions or worries.

    Annie

  • t100angel
    t100angel Member Posts: 22
    edited May 2015

    Thanks for the reply.

    I won't be able to work from home as my leadership won't authorize is to do that. So, either I'm going to try to work while this is happening, or I'm going out on Short Term Disability. I live a 45 minute drive from work, so most likely I'm going out on STD.

    Side question: Do any of you sew/quilt or knit? If so, were you able to continue doing this while going through chemo? I know I will be limited after surgery, but hoping I can keep doing them while going through chemo as they are very relaxing for me.

    Also, anyone here have a cat? How do you deal with the catbox? Gloves? Mask?

    Finally, I have a single chicken (I know most are in flocks, but she's a loner) and wonder about her care once I'm on chemo.

    Any input is appreciated.

  • StefLove
    StefLove Member Posts: 201
    edited May 2015

    Hi ladies, triple negative here too. I'm 34, stage 2b, grade 3, 1/5 nodes although they also saw an enlarged node behind my pectoral muscle during my CT scan. I start AC chemo next Thursday, port placement Monday. Need to get the BRCA test to see if this is genetic. Glad to have found everyone over here!

  • little-k
    little-k Member Posts: 6
    edited May 2015

    Hello, I'm triple negative too. I'm 46, stage 2a, grade 3. I've had a lumpectomy and will meet with my MO in two weeks to find out what is recommended for chemo. I've been reading through this site and you all seem so very kind and helpful.


  • ninjamary
    ninjamary Member Posts: 67
    edited May 2015

    Welcome new girls. I've found this entire site to be a God-send. Definitely join the the monthly chemo boards. It's nice to talk and vent to others who are living with breast cancer.

  • ALHusband
    ALHusband Member Posts: 342
    edited May 2015

    Cocker not sure what you're referring to re: Acidosis.

  • t100angel
    t100angel Member Posts: 22
    edited May 2015

    T100angel

    UPDATE:

    Wow, so much to update.

    Tuesday I saw the plastic surgeon and my choice for reconstruction is feasible. We just need to know more test results and when chemo will start to plan the surgery.

    Wednesday I had my bone and CT scans done.

    Thursday I had a single lymph node biopsy done. They only did this because there was a little concern about a shadow in the node. All other nodes were clean.

    Today (Friday) I talk to my oncologist and got the scans results and both are clear. No cancer in my bones or any organs. This was GREAT news. Now we wait for the node biopsy to know if they need to biopsy more nodes or just move forward with chemo.

    Next week I will have the port surgery so it will be in place for chemo.

    May 20th is the planned start of my chemo. I will be going in every 2 weeks for 4 chemo treatments, then it will be weekly chemo for 12 more weeks after that.

    Surgery will be planned for after all chemo treatments are completed.

    I am so excited to feel like I'm moving forward in this process, and no longer standing around waiting for more information.

    Good thoughts are always appreciated!!

  • treelilac
    treelilac Member Posts: 138
    edited May 2015

    That's great news, Angel!!!!Smile