Calling all TNs

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  • borntosurvive
    borntosurvive Member Posts: 213
    edited July 2012

    Congrats onvacation!!!!  Celebrate, dance, eat, drink and by merry.  You've made it and you're amazing. 

    I agree that chemo nurses are like angels from heavan.  Mine were all amazing and so supportive.  When I wanted to quit they were there and when I was crying my eyes out, they dried my tears.  They were so supportive for my DH as he'd come to every chemo with me.  

  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited July 2012

    Wooo hooo!  Onvacation.  Doing a happy dance for you! 

  • JAN69
    JAN69 Member Posts: 947
    edited July 2012

    In a  recent blood count my PCP suggested I might be pre-diabetic so I've been much more careful what I eat.  I've been occasionally seeing Metformin discussed as a clinical trial, and some of you have told of the SEs.  What is the connection with BC and is it specifcally for TNBC?  Is the trial still taking newbies?

     As for losing weight--I just took a berry cobbler out of the oven.  Oh lourdy!  What a loser I am!!!!!  Jan

  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2012

     onvaca..congrats on finishing your chemo!!! Dancing with you tonight.  You should find the rads to be much easier than the chemo and hopefully this will be so for you. 

    Had 2 employees call in sick today and 1 that just never bothered to show up so I had to do a 10 hr day on my feet today.  I find my stamina is just not like it used to be but made it home safely and now am enjoying this fine cabernet. thanks for the great laughs Bernie and Cocker.  I just shared your jokes with my family and we are all wiping away tears we are laughing so hard.  I Love you guys!

    Maggie

    ps  LE sux

  • Lovelyface
    Lovelyface Member Posts: 674
    edited July 2012

    Luah - A huge congratulations!  What wonderful news that you are moving to annuals now.  Ladies like you are our inspiration, our strength.

  • Tazzy
    Tazzy Member Posts: 2,546
    edited July 2012

    Shar - have to agree with onvacation, very cool.

  • Gemmy1
    Gemmy1 Member Posts: 46
    edited July 2012

    Hello all,

    I have been lurking (creepy I know) reading your posts for a few days now. I was diagnosed with TNS in Dec. 2011. I. Had A/C dose dense and Taxotere followed by BMX 5/29/12. I'm going back to work tomorrow. First day of work this year! Im excited and nervous. It has been a very long six months of chemo and surgery. Reading the posts you all have written is very therapeutic. It is comforting to know I'm not alone. The whole TNS thing is a bit freaky. I'm glad I don't have to take Tamoxifen for five years, but stressed about recurrence. Anyone else worry about that? I too would love to have my hair back and lashes and brows. When my hair was falling out after second A/C, my little dog would bark at me when I got out of the bath tub. I don't know why, maybe he sensed my distress at seeing all of the hair in the tub or maybe I looked different to him but I found it peculiar. Also, why is it that the hair on my legs and other places I dont want it to grow back is growing so much faster than the hair on my head? Has anyone tried any of those lash growing products? Do they work? They are certainly pricey. I am interested in the Metformin thing. Is that only for patients with blood sugar issues or is it being studied for TNS like Tamoxifen is used for BC patients w/ hormone positive tumors? Thanks for all of the useful info and especially for the great jokes! The joke about the cat and the budgie had me laughing til I nearly wet my pants. Blessings on all of you. This is a tough journey. We all deserve a pat on the back or something really fabulous!

    T

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    Ladies - the metformin trials (or those whose PCP or MO will prescribe it) are being used the same way as Tamoxifen, Arimidex or Femara) and yes, TNs can participate in the trial.  There is a discussion thread you may want to check out, including a link to the clinical trial information:

    http://community.breastcancer.org/forum/73/topic/765092?page=14#idx_399

    I think it makes us TNs feel like we have something to help us after we've finished standard treatments.

  • marshajfox
    marshajfox Member Posts: 6
    edited July 2012

    Hi my name is Marsha. I am 62 years old and my husband and mother died of cancer 4 years ago. I was diagnosed in Jan 2012. Had surgery on the 27th of Jan. Stage 11b n0 m0 triple negative grade 3. I had 6 treatments of cytoxan and taxotere. I finished on June 5th, 2012. I start radiation on July 9th, 30 treatments. Ever since the chemo was finished I have terrible joint pain in my shoulders, elbows and wrists. My feet and legs are extremely swollen. They are so bad they look deformed and I have neuropathy. Other than that I did pretty good. The thought of having triple negative is scary. Any input would be appreciated.

  • Lovelyface
    Lovelyface Member Posts: 674
    edited July 2012

    Hi Marshajfox, your feet and legs will definitely get better as neuropathy from chemo does eventually get better.  I am two years out, but I still have pain at the bottom of my shoulders.  The joint pain which I had from Taxol in my hands was disabling, however, it is pretty much all gone now.  Congratulations on finishing chemo.  The Rads is not as bad, except for some fatigue and skin burn.  Everything is very doable from now on.  You have finished the biggest part.  Please just one more thing - don't compare other cancer deaths with yours, each cancer, each person is different.  I also had TN, but I plan to live a full long life, which I am sure you will too, unlike your husband and mother.  But I can iunderstand your worries.  Good Luck! Let us know how your rads go.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    OMG, I'm 11 pages behind.  (I don't think my ADD can handle reading thru them right now.Tongue out) Hope everyone is doing well.  I've missed you guys, but took a little break.

    I had last chemo on 4/17, surgery on 5/18 and for the last few weeks have felt my energy returning. Hallelujah!  Like many of you, I was so sick of feeling sick!

    I go for my sim for rads on 7/12.  I am probably more worried about rads than I was about chemo....because I know more now.  I worked about 20 hours a week during chemo but have decided not to do that during rads.  I'm hoping that not working will help me manage fatigue and get me back to work full time sooner. 

    Okay, now I'll go back and see how many pages I can focus on!

    Phyllis

  • OBXK
    OBXK Member Posts: 791
    edited July 2012

    My Calcium serum and PTH test came in and both are within range! It has been a long month. I feel like I can breathe again.

  • CharB22
    CharB22 Member Posts: 310
    edited July 2012

    Hello all. I haven't posted in a while. I was in the midst of treatment and just needed some time to myself. I finished rads yesterday...I rang that bell!! I'm thrilled to be done. My hair is growing back. I've been told I look like Sinead O'Connor (remember her?), Sigourney Weaver, and Charlize Theron who has just shaved her head for the upcoming Mad Max movie. Now if only I could have half of their money!

    I've been trying to catch up on the posts, but there is way too many. I just wanted to thank you all for the support you gave me when I really needed it.

    To all the newbies: Cancer sucks. Chemo sucks. Radiation was easy for me at least. But it IS doable. I managed it...even after getting pneumonia and spending 4 days in the hospital. I didn't think I was strong enough, but I did it.

    I am so ready to put all of this behind me. I will pop in from time to time. Have a wonderful summer (or winter for those on the other side of the world!)

  • naan1004
    naan1004 Member Posts: 520
    edited July 2012

    I have a question, has anyone had chemo pre and post surgery. I thought I was done, but since there is nothing else for them to do for me since I'm TN, my onc wants to give me chemo again. My first reaction was to start crying, I don't want to go through chemo again! What do u all think, anyone?

  • JAN69
    JAN69 Member Posts: 947
    edited July 2012

    Marsha---Welcome to a very warm and knowledgeable group of women.  Sorry you need to be here.  We have all been frightened by our TN status.  My chemo was a year ago, I had many miserable side effects (SE), but not the sort you are suffering.  I've learned that just about any SE is possible and varies from person to person.  I've also learned to need to make loud noises at your doctor's office to make sure you get the help you need and deserve.

    Your loss of both your mother and husband has to be devastating.  I am so sorry for your loss, especially in light of your own diagnosis.  Come back to this site often and get the support we offer each other.  Jan

  • Lovelyface
    Lovelyface Member Posts: 674
    edited July 2012

    Naan1004 - I don't understand your situation very clearly.  Your diagnosis is not that bad actually, being a Stage IIa and Grade 2 (most TN's are Grade 3) and no node involvement.  It seems like you have taken all the chemo drugs which are the common ones, adrimycin, cytoxan and taxol, the same ones I got.  How many treatments did you do?  Why aren't you doing Rads?  Did they find more cancer or what?

  • Kayak2
    Kayak2 Member Posts: 8,561
    edited July 2012

    Julie (Naan),

    I've never heard of two rounds of chemo for the same tumor.  Were they thinking of giving you the same chemo regimen again?  (There is a lifetime limit on the amount of adriamycin that you can have because of the heart failure potential).

    Did you not have radiation?  I was told that with a lumpectomy, chemo AND radiation are always given, as this has shown to be the most effective treatment, based on clinical trials.  Maybe consider a second opinion.....  Good luck to you.

  • Gabbi42
    Gabbi42 Member Posts: 16
    edited July 2012

    Annie where are you going for radiaition? I have finished Chemo and am waiting to here from the Radiation  Onologist in Palmeston North. I think i will proberly start in August. I have come through Chemo pretty well but feeling a bit tired 

  • naan1004
    naan1004 Member Posts: 520
    edited July 2012

    I had a lumpectomy which showed no node involvement and my margins were all clear so my onc and surgeon both don't think I need radiation. My onc's rational for more chemo is to decrease my chance of recurrence since being TN there isn't any other treatment available, I'm 40 and having more chemo will help me increase my survival beyond 10 yrs?

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited July 2012

    Hi Ladies hope you are having a good day and hopefully some rain to freshen the air for you.

    Onvacation - last chemo congratulations, well done you clever girl.  Probably will be joining you on Rads soon. I'm a bit apprehensive but I'm sure it will be go fine.     

    Tifj - although you have really hot summers, do you have really cold winters? Hope you and the kids enjoyed the fireworks.

    Kathryn - "Dyed the lady fur neon pink: whatever will you get up to next.  You just crack me up.

    Karen - thankfully someone is coming in to train the old fellar on the coffee machine.  I can't stand bitter coffee.  Great great news that your tests were normal.  You just keep on breathing away girl.

    Lovelyface - why do the Indian ladies shave off all that beautful dark shiny hair, is there a reason for it.  It seems such a shame they are such beautiful ladies. I wish I had hair like them.

    Spica16 - I don't know how you cope with cancer and the MS as well.  I think BC is bad enough without another illness to add to it.  You are one very brave lady. We had a shave for cancer week recently and all the nurses and reception staff at work shaved their heads for me and the Doctor's all donated for it.  Was so wonderful of them to do that for me.  So yes, nurses and other people are inspirational when they do that sort of thing.

    Luah - congratulations on your follow up and no issues. Woo hoo and on making nearly three years.  You go girl.

    Jan69 - "Berry Cobbler" sounds bloody nice to me.  No girl you are not a loser,  just normal. We have to have some incentives to get over this crappy BC you know.

    Mags - don't overdo it with those 10 hr days.  I'm working too and my stamina is not what it used to be and seems to be getting worse. Enjoy your fine cabernet, that will perk you up.

    Gemmy1 - I'm with you and stressed about recurrence.  Seems to be more and more on my mid lately.   Its funny how animals sense something is not right. My little girl Chloe sits and looks at me funny until I put my glasses back on.  She must think "my mum looks funny" or otherwise she is thinking something else to chew.

    Marshajfox - Hi Marsha welcome to a wonderful group of ladies with sound knowledge and advice. I also had the swelling of my feet and neuropathy.  I put a pillow in the bottom of my bed for my feet to go on and its helps take the swelling down. In ther morning they are much better.  Hope this helps.  

    CharBB - so you look like Sinead O'Connor and cancer is just a "thorn in your side".  What caused the penumonia during rads. Did you catch cold or was it the radiation.

    Gabbi42 - Congratulations on finishing chemo. I will be going to Waikato for my rads.  Yes I am feeling very tired too so not looking forward to the  tiredness of radiation as well. Surely there has got to be something good coming for us soon. 

    Well ladies it was a long ride to get the coffee machine.  It was such a beautiful day up there, and also a gorgeous day here apparently but we didn't have the coldness in the air that we have here and we knew as soon as we felt the cold that we were nearing home. We stopped overnight at a motel cause it was a long way for the old fellar to drive there and back in one day and we didn't leave until the afternoon so that made it easier for him and we had fish and chips for dinner last night, was yummy.      

    Have a good day.  Keep cool if you can says envious me. Annie

             

           

  • mags20487
    mags20487 Member Posts: 1,591
    edited July 2012

    Well yesterday was def one of the worst days I have had in my life.  My son -who is going through a divorce at 22yrs old- did not show up for work yesterday.  He also was not answering his phone.  Both completely out of character.  So my hubby just in the car and raced over to his place thinking his depression had gotten the better of him.  I cried the whole time waiting for a call to be sure he was ok.  He had overslept.  UGHH--relief and anger that he put us through that.  I ended up going in to work to help out as it was terribly busy and I also have a newer employee who did not show up for a shift 2 days in a row.  Came home mentally and physically exhausted.  Gotta go in again today and tomorrow.  Who says owning your own business is so great.  I am determined that today WILL be a good day inspite of myself!

    NAAN--no advice from here.  Never heard of chemo again after you have finished and had surgery with clear margins.  Did you have complete response??

    Maggie

  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Maggie - wow that had to be an emotional experience - so glad your son was ok!

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited July 2012

    NAAN - I've heard of people doing more chemo, but I don't think I've heard of anyone having just a lumpectomy at your stage and NOT having radiation.  Rads are usually recommended unless you have a MX, then it would depend on whether or not there were nodes involved.   I think you should get a second opinion from a Radiation Oncologist.

    Kathyrnn - how's your mom doing?

    CS - you do such a great job mentioning everyone!  Glad you had a nice excursion to get the coffee machine.  And I can answer for Tif with your question about the weather.  The Kansas City area normally has very hot weather in the summer, and there can be very, very cold days in the dead of winter.  Winter doesn't last as long, though, as it does here in the northeast. 

    Maggie - glad your son was OK.  I can only imagine how worried you all must have been.

  • TifJ
    TifJ Member Posts: 1,568
    edited July 2012

    Annie- LUV ia quite right about the weather here! This past winter though was very mild and I think we are now paying for it with a brutal summer!! Hope you are feeling well today! Yes, we enjoyed the fireworks- we can also see the city display very well from our driveway!

    Wow Mags! I can only imagine the fear in your heart when you couldn't reach your son!

    Naan- I am with everyone else- seek a second opinion. I too have never heard of a second round of chemo with your stats or a lumpectomy without rads.

    Welcome to all the new ladies. We are here to help and have a little fun (thank you Bernie and Annie for all the great jokes!)

  • OBXK
    OBXK Member Posts: 791
    edited July 2012

    Naan - I would have fainted dead, if my once told me I had to go back to chemo. I've never heard of this either.



    CharB - woo hoo! So glad treatment is behind you. Go live!



    Jan - I hope you are able to get your blood sugar level down.



    Annie - sounds like you and the OF

    had a nice getaway. It is hotter than blue blazes here! Poor Augie, has to do all his business in 10 minutes, as that's about all I can take!

  • Lovelyface
    Lovelyface Member Posts: 674
    edited July 2012

    Naan - please get away from this doctor, as chemo twice - I have never heard of it.  Especially in your case, you should have Rads.  In addition to all that you have already had, the normal course of treatment is to add Rads to that.  I would not have another round of chemo, no way, unless there was mets.  Please be careful.

  • Luah
    Luah Member Posts: 1,541
    edited July 2012

    Nann: Yes, I have heard of chemo pre and post surgery, usually 3 treatments before, and 3 after. It is not all that unusual. The idea is to shrink the tumour first and clean up any stray cells afterwards. Same total amount of chemo as any of us have had in one longer shot.

    Is that what your doc is recommending? If you have already done 6 treatments, I would say, pass on more if your surgery came out clean. Besides, you are only allowed a certain lifetime amount of the adriamyacin. 

  • Lovelyface
    Lovelyface Member Posts: 674
    edited November 2013


    Ladies, I am so very very very lethargic. I know something is wrong. The endocronologist, remember that doc who told me that he did not appreciate me calling twice, well, I am still in the process of going back to seeing my primary care and getting anothr endocronoligist to ask for his second opinion.


    My cortisol levels and other tests are normal, so the doctor had told me I did not have any thyroid related problems, except for that nodule. But I have heard that one has to take a 24 hour urine test, or at least have a saliva test which is more accurate for testing thyroid functions. I personally feel that I am suffereing from insufficient adrenal function. Can anyone please help me with this situation. Who should I see, and what should I say? There is an internet website called womenshealthnetwork.com - does anyone subscribe to it. They swear that they know how to balance adrenal but I am too afraid to do anything untraditional. In other words, why aren't the traditional doctors able to tell from blood tests if someone has adrenal insufficiency. My cortisol level taken at 7 am. was 13.3 within normal range. FSH is 68.5 (within normal), ACTH is 21(6-58 is normal). What is wrong with me? Please help, if someone was feeling like me. When I wake up in the morning, I am tired, after work, I am tired, no matter how much rest I have, I am tired. My hair is also really thinning out.


    I took a tumor marker test again CA27.29 and am waiting for results on Monday. Normal range is up to 34, mine was risen from 8 to 20, but still within normal range. I think it had risen due to thyroid biopsy, but onco. says no, it won't do it. Anyone has any adrenal insufficiency information, please tell me about it, please. Thanks.


    Edited by Mods to update link

  • Luah
    Luah Member Posts: 1,541
    edited July 2012

    Lovely: Sorry you're feeling so bad, no suggestions here, hope someone will be along shortly. 

    Ladies: Will be off the boards for a while as my sister (also a cancer survivor) and I are taking a 12-day trip to Newfoundland and Labrador. Hiking, whale watching, iceberg sighting, peace and calm, another world. Can't wait! Wishing you all good health, minimal side effects (for those in treatment) and cherished summer moments for all.   

  • Lovelyface
    Lovelyface Member Posts: 674
    edited July 2012

    Luah, I will miss your wisdom here while you are gone.  I almost depend on you, to hear from you.  In a way you are very lucky, although I don't mean that two sisters should get cancer, but in a way you two can connect with each other so closely.  My sister and I have fallen apart so badly after my experience.  I didn't feel that she was in it with me, and that she should have come to visit me no matter what, from New Zealand, but she did not and now she is talking to me asking me to come to her daughter's wedding, as if nothing happened.  I honestly don't know how to deal with any of my family members anymore.  I feel they all left me alone, too alone when I needed them.  So, in a way, you can really connect with your sister and have a wonderful time since you understand each other so well, now, especially after this experience.  We will miss you.  Wishing you a wonderful time, and make a lot of cherished memories to last a lifetime.

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