Calling all TNs

Luvmydobies

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

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

Thinking of you Lisa. xo

Kayak2

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

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

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

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

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

Hugs from NYC

Luvmydobies

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

MomMom

Lisa, Prayers for B9!!!

Cocker_Spaniel

Lisa in your pocket and praying for B9.

 

Tobycc

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

eileenpg

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

Meadow

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

Lisa, thinking of you

Luvmydobies

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

Hi Lisa

Thoughts, hugs and prayers from the UK.

x

BanR

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

CatWhispurrer

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

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

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

jenjenl

Any news lisa? Thinking of you.

Lisaj514

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

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

MomMom

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

WooooHooooo Lisa!!!!!!

Lisaj514

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

anotherNYCGirl

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

eileenpg

Lisa=I had tears in my eyes when I read  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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Cocker_Spaniel

Lisa wonderful news. What as great Christmas present for you and your family (and all of us here).  You keep on going girl you are doing fine.  Big hugs. xxooxx

 

InspiredbyDolce

Hi Everyone!

First off, Cat, so wonderful to hear from you and your flight sounds like you are able to squeeze in a little bit of excitement. I'm glad you have some loving volunteers to help bridge the route until the trial is in Atlanta. So glad to hear that you are in remission.

And Lisa, yippee! I also thought of you all day hoping for your news to come in today, so you could go back to enjoying life. I'm so delighted for you.

I also wanted to update everyone that I too had my semi-annual surveillance today, which was a bilateral ultrasound. All was completely normal. I asked my Onc about tightness in my right implant, and he said it's not an uncommon question from women, and that it's due to the fact that my implant is held in place by my muscle, and when I workout, it flexes that muscle, causing tightening, etc. I also think it could be due to the saline implants. They fit a bit wider I think than other implants in the profile and they are a bit firmer. I have discussed with my PS about switching them out, and he said we could try that. Originally he put me in these since he said I was thin and this would be less rippling.

My Radiologist also told me (and showed me on the screen today) that there is a very thin border between the implant and rib, so that if a lump was present at any point, he said I would most likely feel it easily or even see it easily first. This discussion came about because I always manage to find a little nook or something and ask what is that little thing I feel and I try to feel and go deep. What I end up feeling is the rib bone. We were talking specifically at the 6 o'clock position, which is what I always take extra attention to, as this was the dx location.

So, in 10 days I will reach 3 years. I quoted some stats today to my Radiologist, who is very up on TNBC, and he nodded and confirmed that 3 years is a deep milestone and a definite turning point in survivorship.

I will post at 3 years so that you all can celebrate with me.

Thanks for sharing all the wonderful updates today.

Wishing you all a wonderful holiday!

xoxo

CatWhispurrer

Simple - Yes, Dr. Ingrid Mayer is my onc at Vanderbilt. I am there on Tuesdays. What days do you go? Small world heh?