Calling all TNs
Comments
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Radical, add me to the list. I never had heartburn or stomach issues until chemo. Now it looks like I may be a lifetime member of the Prilosec club. I'm hoping to wean myself off eventually. Try not to worry. Sending good thoughts your way.
Hugs, lilyrose
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As our dear Karen (OBX) used to say, cancer/chemo/rads, "the gift that keeps on giving". So true.
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ok! Not that I want any of you ladies to suffer with me, but I'm feeling like I'm in good company! Seems like I'm just pretty normal!
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Me as well! I go for an endoscopy the end of jan. For me it's to determine why I have swallowing issues. I've gone for a barium swallow test which revealed an issue and this is next step. For me, this started the first week of rads. I feel it's radiation induced but I guess we will see.
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Hi everyone...re the coqu10...I have been taking it for 5 years now!
Sorry to everyone about that stomach problems but yes..chemo is the gift that keeps giving....chemo also affects your saliva as well..I still get dry mouth and throat..keep a bottle of water with me especially at night...
Glad to see we are all doing pretty well..and good to see our new people coming on hear for support and information....I plan on asking my onc about the DCA next time I see him.
Happy Anniversary to Annie and her old fella...roses..wow...he must be pretty special...and so are you!
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Hi Ladies...I guess I will just jump on in. I never had issues with heartburn but after two weeks of Abraxane I had to start taking the Zantac. I was taking it twice a day but stopped Abraxane in April so took it to once a day. Tried stopping both but had burning on occasion so the chemo did something to the lining of my stomach which was a SE I believe.
So can someone let me know about the co10? Also about the DCA?
I meet with my MO tomorrow for my monthly visit so I could add this to my questions.
Have a relaxing rest of the day warriors...Lucy.
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Lucy, I take liquid CoQ10, but I don't have any info on it to help you with your questions. I started taking it when I was doing chemo, but I don't remember why now....chemo brain? I wish I could help you more.
I was able to ween myself off prilosec after finishing chemo, but I still get heartburn at night if I eat too close before going to bed. It happened last night (the shift in time made me want to go to bed almost immediately after dinner). I was up around midnight rooting around in my medicine cabinet looking for some heartburn relief. I finished chemo Jan. 15, 2013....so it takes time to recover from the heartburn SE of chemo!
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ello ladies! I'm looking for support/info regarding heart issues after chemo. Anyone have chemo related heart failure? I was dx TnBC 3/2011 at 33, finished treatment (mast., AC-T and rads) 12/2011 and was just dx with systolic heart failure last week. Trying to wrap my head around heart problems at the grand ole age of 36 and trying to find more information. The cardio we saw was...less than stellar.
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I started the coq10 question here recently. What I've learned is it seems to be like anything else. Some studies show good to prevent cancer recurrence, some show it elevates cancer risk. Almost all agree it's good for the heart.
With regard to the reflux issues. I do thInk chemo causes major g.i. issues. Our oncologists don't seem to mention this as a long term effect though. They seem to think people only experience heart-burn and diarrhea DURRING treatment. Seems to me once the gi lining is damaged, it only makes sense that these things continue to be a problem.
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Thank you simple life...I will mention it to my MO as we are I our way now. I may google it and see if I can get more info. Also about the DCA as well.
Thanks so much appreciate any and all helpful options to consider.
Have a great day ladies!!! Lucy
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Stephanie, I'm so sorry to hear about your heart issue. I know Adriamycin can cause heart failure even years later. That's why the dose is limited on it. I don't know much about it other than that. Have you posted on the chemo portion of this site about it. Maybe the moderators can help you locate the portion of this site where you are most likely to find other people with the same issue. That is a hard thing to be dealing with particularly at such a young age. Did you have adriamycin? Also, I hope you find a cardiologist that you feel better about. Hugs, Kay
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Hi, I don't come often anymore, but I thought especially all my TN's should know what happened recently to me. It's very important! Please read!!!!!
A RANT with a WARNING! I am 2 1/2 years out from surgery & my Final Pathology report! My Surgical Oncologist was recently made to retire. I knew this was going to happen but a little sooner than I expected. So I had thought for many years that I would go to John's Hopkins. I had my first appointment a few weeks ago. Last night I went in to set up my electronic account & found that they had Their Pathologists read my Slides from surgery. Was I floored! My first report read 3 spots of micro-invasion each less than a mm. My second report from Hopkins read 4 possibly 5 spots of micro-invasion & also one Invasive spot of 1.5mm! All still ER & PR negative. My concern is the Gray Area I am in with being Triple Neg & that at 4-6 mm they will do Chemo. I did not do Chemo & I also know that my treatment is fine for my diagnosis with just RADS. But what scares me is others who might be on that fine line closer to the darker grey area. Please Get a Second Pathologist to look at Your slides! Totally independent from Your Hospital/Dr's/Pathologists! Had my Invasive part of my Tumor been closer to the 4mm only to find out over 2 years later that it was larger.....,I shudder to even think about it! It Never Hurts to have 2 Separate Sets of EYES Looking out for US! PLEASE get a second set of Pathologist Eyes from a total different Hospital to take a look at your slides from your surgery! Thanks for reading Julz
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Thanks for the heads up! I did get two people to read my slides but it was by accident. There was a slight variation in what the pathologists say so I'm guessing this is actually a common thing! Borderline diagnosis should probably be double checked!
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thanks!
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Thanks for the info Julz4. Will check it out.
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@simplelife4real I'll head over to the chemo section. I didn't think to go there as I am almost 3 years out.
I also had a second opinion done about 3-4 weeks after my local hospital did my pathology, I decided to head to a major medical center with a really great med school. After checking things out, they actually sent for my original tissue. Changed my status from ER/PR+ to TNBC.
I had another friend who discovered that her Onc MISREAD HER ENTIRE PATH REPORT! and she had invasive ductal AND invasive lobular cancerous tumors. Always ask for a copy of all lab/path reports.
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This is just shocking to read that lab results are read wrongly by "professionals". This is your life in their hands and they are playing at doctoring. Yes, get a second and even a third opinion if your mind is not at rest and you don't feel confident they are not doing everything possible for you.
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I totally agree with second opinion. It was my second opinion team that pursued the nodules on my lung that showed up on my first CT scan. The first 2 teams ignored them and told not to be concerned because people have nodules all the time. Granted I think it was because I had no nodes involved but they should have ruled them out. Unfortunately they were also TNBC but so glad I did.
Always trust your heart and your gut.
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spirit, I was also told I have visuals in my lung and we'd address it at a later date. No one has addressed it yet. Guess I know a darn good question to ask my bs next time I see her!
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Radical please do follow up. You know we all have to be our own advocates for our care. I have certainly learned that back when my mom was in her last days. It's really bad so we just have too.
I heard from a friend I met on a board last year and she has TNBC and she had nodules on her lung like me and our story was very similar. she was telling me that the past few weeks she was having bad headaches and so the did an MRI and they found 7 small lesions on her brain in various areas. She is going tomorrow for the gamma knife treatment. The docs say she will do well. She was dx 4 yrs ago on her breast then last year her lung. She has not had any chemo at all for the lung just a couple of RFA treatments. Have any of you heard of this? RFA is Radio Frequency Ablation where they go in and zap the tumor/nodules with a laser. Then they watch to see if it is fine.
Just wanting to know if anyone has heard of this or something similar.
Lucy
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Anyone on the board from NC? Is there a NC specific sub-thread on here anywhere? I just moved back home to NC from Northern Va where I was diagnosed and treated and spent the year of hell :-) I am interested in finding any groups of ladies in the Raleigh area-there is a thread of just northern va ladies who get together periodically, recommend docs, etc. I will need to transfer my records to a new oncologist here. I finished chemo in Feb and Rads in June...now living scared.
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I live in Charlotte, nc
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Hi Relocatedtarheel! I'm in Pittsboro NC. My Onc is at UNC and is great. There are other ones there too who are good too. I can give you some suggestions if you'd like? You can PM me also. I'd love to meet up with you and others also!
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Hi, I was diagnosed at age 47. I had a mastectomy and then chemo Flourouracil F5, Epirubicin, Cyclophosphamide x3 every 3 weeks then Taxol x3 every 3 weeks and 15 sessions of radiotherapy. To be honest, I had no idea about my diagnosis. I received the letters but they made me cry and didn't make sense so I just filed them. I kind of had it in my head that I that the doctors knew what they were doing and I just had to get through the treatment, which I did. I recently had my first mammogram and they found a suspicious mass but it turned out to be a benign cyst and I was given the all clear on 14th October 2014 and the next step was reconstructive surgery and I was advised that this could be done before Christmas - oh joy, all over with and new boob for Xmas for being a good girl! At least I had 2 weeks of this joy as I then found a lump just above my left collar bone and the appointment that should have been discussing reconstruction was biopsy on this lump and on another they found under my right armpit. They told me it could be a number of things but with my history I should prepare for the worst. On Wednesday 5th November 2014 they told me the breast cancer was back (both biopsies showed breast cancer) and it is incurable and its now a matter of managing the cancer to maintain best quality of life. Since then I have dug out all the letters I had previously filed and did some research to understand the terms. I do not regret the way I dealt with this and think if I had understood at the beginning I would not have got through the treatment as well. Ignorance sometimes really is bliss. The hardest part for me was telling my 17 year old daughter (who actually took the news better than my friends). I can deal with the fact that I only have a short time to live (Consultant said possibly as long a 5 years) and have already started to go through my things and have started a bucket list, and I'm fine with this until I think about my daughter and the time I won't get to spend with her, and it is the only thing that makes me cry and I think it always will.
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saskia3,
Don't put an expiration date on yourself. Good to get everything prepared and start knocking things off your bucket list. Once that's done, go live life like never before! Take real pictures (not just ones that stay in people's phones and computers) so your daughter will be sure to have tons of them.
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Saskia so sorry to hear of your latest findings. We are all pretty much very aware of our outcome from this horrible disease. My first question is, do you have a faith? I am a very strong Christian and I know it is what gives me strength? You don't mention when you were first dx only your age and the date of your recent dx? I know what you mean about the sadness you feel with your daughter. I have a daughter and a baby granddaughter who is 2. It saddens me too so I don't think about that much and try to just live each day to it's fullest. I am still working and exercising as I need to for medical for my husband and myself. He is afflicted by something in his nerves and had to retire early and has been fighting for disability and has been turned down twice. We have an attorney now and waiting for court date. I am currently on a study trial and have been doing well...thank God. I did Abraxane and Avastin weekly for 6 months and still doing Avastin every 2 weeks and a targeted therapy pill daily. So far it has been doing well as I have nodules on my lung. When I started it was 5 and we are down to 2...another praise God!
Where do you live? I live in Washington state.
Stay strong and positive...Lucy
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Saskia, I'm so sorry about your recent stage IV diagnosis. My heart goes out to you. I wish there was a magic wand that doctor's could wave that would make it all go away. (((Hugs)))
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Thank you Radical2Squared, real photos are so important. I have 2 photo walls in my dining room - 1 of me and 1 of my daughter, but most of them are from before digital cameras and mobile phones. When I was collecting up my special things (so they are all in 1 place ready for my best friend) I came across 3 rolls of film - 1 labelled summer 06. My job for tomorrow is to find somewhere that will develop them and buy discs and take off all my photos from the computer and get those developed too. I am actually quite excited about the rolls of film - will let you know how they come out
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SpiritBlessing, I was first diagnosed 17th July 2013. Unfortunately I don't have your faith, although I know I will be joining my Dad, little sister and other friends I have lost. I live in England and we do not have the medical resources you have in USA, unfortunately. I am also extremely needle phobic and cry like a baby each and every time (my teenage daughter holds my hand at the dentist!). I have now changed my diary from being my work diary to being my social diary and accepting every invitation I get (I am even going to a jumble sale on Saturday - I used to love them but haven't been to one since I was about 14 or 15), horseriding, big party in London and bought my 50th birthday party forward 2 years just in case - if I make it to 50, I can have an even bigger party. The time I have left is going to be such fun x0 -
Saskia, I am sorry about your cancer. It just isn't right or fair! I know many stories of people who were given X amount of time, only to live far and beyond their expiration date. So please, do what you are doing, making plans and enjoying everyday....and keep up the fight, for the docs are not always right. I am glad you have found us here. So I am curious....what is a jumble sale?! Whatever it is I love the name!
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