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Calling all TNs

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Comments

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Lisa, I know exactly what you mean! I wish I could erase everything I've read about TN, or almost everything. I've read a few positive things that I didn't mind. I am glad they are working on new therapies for TN and BC in general, but I'm like why couldn't they come up with these things years ago?!! To me it just seems like they're still several years away from anything earth shattering. I know these things take time but once you've had cancer you run out of patience!

    Fightergirl, like Rad said, one thing at a time! You'll be alright! Hang with us and we'll help all we can. HUGS!!!

  • MomMom
    MomMom Member Posts: 334
    edited December 2014


    Lisa, I second what Luvmydobies just said.  We are all bummed by such news, but you especially did not need to read that particular story with the biopsy hanging over your head.  Please take heart that Sharon's story is so, so unusual - almost unheard of.  Everyone is sending positive thoughts and prayers your way.  Hang in there!

     

  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    Lisa, will

    Lisa, will be praying all weekend. Fighter, so glad you found us! Find the thread that also matches your chemo

    I am one of those that really does not worry about it coming back. Maybe it's denial not sure....but I have to take it one day at a time. I can't even think about still doing chemo in February....that's when I shut down

    I am 53, married, mom of fraternal twins in college, and work full time

    Hugs and blessings to all

    Kath

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Lisa, thinking of you today. Prayers for a benign biopsy!

    Ladies, I am still having bowel issues. Sorry and I know this sounds minor compard to other things on here. Anyway, have any of you had C Diff? I don't think I actually have it. I had it three times during treatment. It's been about 16 months since finishing treatment for my last bout of it. I have read that it can take years for the bowels to fully recover after having it, and my GI Doc says he thinks it's just IBS I'm having now. But every single time I get an upset stomach/diarrhea my mind goes to C Diff. This (diarrhea), happens at least once a week, by the way! It's a PTSD a thing for me also. I just get weepy and angry especially since I went to the ER with vomiting the other night which I already mentioned. Besides thinking S Diff, mind also still goes to possible mets, like liver! I had diarrhea last night after dinner so I didn't sleep because my mind raced! I also had night sweats and instead of thinking it was due to stress my thoughts were irrational once again! I've taken two doses of Pepto Bismol this morning for rumbly stomach/bowels and just a sick/nausea feeling and dry mouth from crying I think. God, someone make it stop! Sorry for the rant. I've just had a rough couple of weeks. Anyway, anyone else with bowel/stomach issues that sometimes consumes their thoughts? Thanks in advance!

  • jenjenl
    jenjenl Member Posts: 409
    edited December 2014

    Luv, I think you need to just go ahead and get a scan....you're driving yourself nuts :)

    Thinking of you Lisa. xo

  • kayak2
    kayak2 Member Posts: 9,028
    edited December 2014

    Luv, a simple stool culture will tell you if you have C diff or any other GI parasite or stool bug.  Simple to do and doesn't expose you to any extra radiation (like a scan).  Ask your GP for a script to get this done.  Hope you feel better soon.  Carol

  • eileenpg
    eileenpg Member Posts: 431
    edited December 2014


    luvmydobies= In my field of work I have had many patient's with c-diff. They can test for that easily. Have you had that done? Also, when you have loose stools(many) that have a horrible odor. Usually people are put on Vancomycin and sometimes they stay on it for quite a while. However,they do come off of it. Time varies. Not years to my knowledge. Please get a stool sample tested this way you won't drive yourself nuts

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Thanks ladies! I just got off the phone with my GI doc's nurse. I did have a colonoscopy and endoscopy a year ago. Sorry if I didn't mention that before. Anyway, she said he biopsied for Chron's, colitis, among other things and nothing bad came back. They want me to do a breath test for SIBO, which is small intestinal bacterial overgrowth. I am going to try to get that done after Christmas because the test itself can make you not feel well, and I'm leaving Sunday to go to TX for the week. Plus you aren't supposed to do it if you've recently been sick or had diarrhea. UGH!!! I asked about a scan and they said they don't think it's necessary due to the blood work results and scope results. I'll keep hounding them though if this keeps up. They said my symptoms are most likely IBS since these are the symptoms I had when they did my scopes. They said SIBO is common with IBS. I've read about it though and it sounds like there's not really a "cure". They try to treat it with antibiotics such as Rifaximin, which supposedly isn't a high offender of C Diff, but it sounds like it's only a temporary fix. Ugh.

    Also I did a Vancomycin taper the last 8 weeks of chemo and I finished it a week after chemo for the C Diff. The ID doctor said no reason to retest unless I have symptoms again. I remember the horrid odor and I haven't had that. Also when I have diarrhea it's usually only once or twice a day. I always take Pepto after so I keep telling myself if it was C Diff the Pepto wouldn't help. It didn't before anyway. Plus I haven't been on antibiotics since the Vanco last August and I haven't been in the hospital or a nursing facility where it's most prevalent. I was going to mention all this in my post this morning but my phone kept messing up. I use my phone a lot because I don't want to go upstairs and fire up the computer. Lol. So grateful for this forum. Thank you so much for letting me lean on all of you! XOXOXO!!!!

  • lisaj514
    lisaj514 Member Posts: 289
    edited December 2014

    hi awesome TN gals!

    Biopsy done. They call it a cyst as it's not palpable, a "lump" is palpable. I didn't know this distinction before. Anyone else know this? it reduced down almost totally and she could barely see it after taking the samples, which is a good sign...except that's how my cancer "lump" acted also and was not expected to come back malig. I'm feeling good and "positive" right now (God how I hate that word) . But won't have path report until wed at the earliest but more likely thurs. How I hate waiting. Because of my history they will test every lump bump and cyst I guess. A few more days of agonizing waiting. ITS GONNA BE BENIGN!

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited December 2014

    Lisa, - Glad it's done and hope you get your BENIGN results ASAP so that you can relax!!

    Hugs from NYC ;)

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Lisa we'll be waiting with you. It'll be alright!

  • MomMom
    MomMom Member Posts: 334
    edited December 2014

    Lisa, Prayers for B9!!!

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited December 2014

    Lisa in your pocket and praying for B9.


     

  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    you are right in GF!!!! benign is the word.....prayers

  • eileenpg
    eileenpg Member Posts: 431
    edited December 2014


    Lisa=BENIGN!! REPEAT BENIGN!!! KEEP REPEATING!!!!!!!

  • meadow
    meadow Member Posts: 998
    edited December 2014

    Luv, how is your gallbladder? It can cause the symptoms you have

    Lisa, thinking of you

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Hi Meadow, they don't think it's my gallbladder. All liver tests have come back fine the couple of times they've been checked. My sister in law had her fall bladder removed because of bowel issues and now they're worse than ever, so I sure hope it's not that. Obviously there are worse things it could be though. I've always had bowel issues, as do my brother and mother. It's just that mine have been a bit worse after C Diff. My ID and GI doc's both said that post infectious IBS is very common after C Diff and it could last awhile or maybe even forever. Ugh.It's just a PTSD issue with meever since having it. I get panicky and my mind takes awhile to recover when I have an off day.

  • breastcancerhusband
    breastcancerhusband Member Posts: 69
    edited December 2014

    Hi Lisa

    Thoughts, hugs and prayers from the UK.

    x

  • BanR
    BanR Member Posts: 238
    edited December 2014

    Lisa...praying for you... it has to be benign!

  • CatWhispurrer
    CatWhispurrer Member Posts: 193
    edited December 2014

    Luv - maybe you should try to settle your mind as maybe it is just IBS. Don't let your mind play games with it.

    I haven't posted in awhile but wanted to let everyone know that I am doing okay. I just had my second CT scan since starting my clinical trial at Vanderbilt with Cisplatin and a PI3k inhibator. I am in remission (I think they call it Pcr)! It is a hard regimen but definitely doing the job. I have been traveling from West GA to Nashville 3 weeks out of 4 with one week off. The trial is supposed to start at Emory in Atlanta soon so then I will transfer. That is only 1.5 hours away instead of 4.5-5 hrs. I have been getting flown to Nashville by a group called Angel Flight where private pilots fly me there and back using their own planes, usually 4-6 seaters. Very fun too. A nice group of volunteers. I wanted to mention this in case some of you see trials that are regional to you as you could check them out to see if they would help. They usually like a 200 mile radius I think, about 1-2 hr flights.

    Take care everyone!

  • simplelife4real
    simplelife4real Member Posts: 341
    edited December 2014

    That is WONDERUL news Cat. Is Dr. Mayer your MO by any chance? She is mine at Vanderbilt. I'm really happy to hear that the clinical trial is working so well for you...just sorry that the regimem is hard. Thanks for posting about the pilots too. It's good to know about things like that. Wishing you a great holiday.

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Cat, so glad the clinical trial is going well for you! Thanks for the update. XOXO!!!

  • jenjenl
    jenjenl Member Posts: 409
    edited December 2014

    Any news lisa? Thinking of you.

  • lisaj514
    lisaj514 Member Posts: 289
    edited December 2014

    yes yes yes!!!,BENIGN!!!!!!!!!!!!! BENIGN!!!!!!!!!!!!!!! BENIGN!!!!!NO MALIGNANCY!!!!!!! Can't repeat it enough! love those words!

    So relieved but how many more times during my life (our lives) will I (we) have to go through this fear. But for now I can breath again. Yippeeeee, happy dancing all around!

    Radiologist called me as soon as she got results on her desk this morning. I was driving and had to pull over as I saw the caller ID on my car(omg panic) but first thing she said was "Lisa this is dr Shaheen, everything's is ok, there is no malignancy" she the went on to say some other stuff like it was fibrous tissue blah, blah, blah but what I heard was no malignancy, no cancer. I called back later in the afternoon to ask for a copy of the path report and rad report etc

    Yayyyyyyy girls!

  • jenjenl
    jenjenl Member Posts: 409
    edited December 2014

    yay....so happy for you, i have chills. xo

  • MomMom
    MomMom Member Posts: 334
    edited December 2014

    Lisa, You've been on my mind all day. There are no words to say how happy I am to get this message from you! I feel like it's a victory for all of us!

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    WooooHooooo Lisa!!!!!!

  • lisaj514
    lisaj514 Member Posts: 289
    edited December 2014

    Mwawww, kisses to all you sista's. We need to be there for each other through thick and thin

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited December 2014

    YAYYYYYY LISA!! So happy to read your news!! SmileSmileSmile

  • eileenpg
    eileenpg Member Posts: 431
    edited December 2014

    Lisa=I had tears in my eyes when I read ThumbsUpSmile your blog. I remember my BS called me when I was driving. It was to give me my news if my BC was in my lymph nodes. I thought I was going to pass out when I saw his number from anxiety.

    YEAH YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!