Calling all TNs
Comments
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Heidi..have a great trip and hope the shot does it for you.
Heather your picture lookss wonderful. I just this Monday stopped wearing my wig to work.
Selena1973...sorry you have to be here but welcome. These women are a trememndous source of support and knowledge. I was on enbrel for over 10 years prior to the diagnosis. Stopped taking it the day of diagnosis and haven't resumed it yet. The chemo kicked back all my rheumatoid arthritis symptoms. This is a journey and we will be here with you.
Monish...I was so stressed before I was diagnosed, big financial worries that I kept telling my husband I was afraid I was going to die. Looking back, I truly don't think the stress caused my cancr, i think I knew something wasn't right with my body but didn't know what . And yes, I worry that the stress could cause it to come back although I tell myself that this is just fear talking.
Heather... I think my husband is so afraid of anything going wrong he does not want to talk about it, but he IS going with me TOMORROW for my ONCOLOGIST 6 month follow up and I am feeling really NERVOUS!!!! I have no idea why, except that you walk back into that world and next month is the tomographic mamogram..... just scares me and it is hard to shake. Have had a few nightmares recently and I never have them.
Wrenwood 47....so sorry what does your oncologist say? Are the mouth sores still there from treatment. I used a thing from the dentist that really helped clear up my mouth sores. It was a steroid paste I applied to the ulcer.
OH AND THE BIG NEWS IS MY SON-IN-LAW CAME IN #243 IN THE BOSTON MARATHON YESTERDAY. Yea Shamus!
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Congrats to your son Susan. I also tend to have nightmares or weird dreams around appt time.
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OMG Susan! My husband's name is Shames (his parents spelled it wrong!). Such an unusual name. Congrats to your son-in-law . . . what an accomplishment! With that, I'm headed off to the gym to do my measly 3 miles!
Kathy
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Thanks for the info Lory48, I would also like to no more about this vaccine. My next tx is next week maybe I'll ask the Doc, she'll probably look at me like I'm crazy like she usually does when I ask questions. I did have a CT scan of my lungs after my surgery so maybe since they thought the cancer would go there next and it didn't so they didn't bother to check anywhere else.
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wrenwood47, I to have had mouth ulcers since my last chemo in feb of 2011...I may get a day here and there without one but 98% of the time my mouth hurts soooo bad.and my fatigue over the last 2 months has been horrible... I have been on bioplasma cell salt regeneration , coconut oil , vitamins, etc...and of course eating good and exercising at curves almost every day but I drag all day long... I am thinking it's my thyroid and lack of hormones (had an ooph) I also have been getting boils in one location for about 3 months.... I have a Dr.Appointment on the 30th so we will see.
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When I had mouth sores after my first chemo infusion, my MO prescribed Valtrex. I never had another one. I took it for 6 months post-chemo and now I am off it without any further trouble. It's definitely worth a try for those of you suffering.
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Susan - congrats to your son in law!
I have an appointment coming up Thursday with my RO. It's just my one year follow up, but I find myself getting nervous. And then next week, I have my 3 month follow up with my MO. That's just too many oncs at once, you know? I'm starting to feel the old anxiety building....does anyone else go through this at exam time?
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Fighter: Thank you for your help. It showed up again...it's hide and seek or peek-a-boo now. UUUUGGGGHHHH How unfun!
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Hi all. Haven't been on in awhile. I have a stressful job as a school counselor and we have five weeks left. Really a tough time of year-everyone winding down and I'm already scheduling for next year, doing orientations, field trips, honors night, meetings, ack. I'm at school every night until 6 or later. I'm very stressed and worry about it contributing to a recurrence. I also have developed mild LE so go to therapy once a week (down from twice a week since Dec) which means missing work for two hours.
I see my BS, RO, and MO every three months for the next three years. I will see both RO and BS in about two weeks. Going that often is stressful and makes me anxious. I tried to eliminate one of them but they all insist that protocol says I see them that often so I figure if something does come back I will catch it early. I think after this next round I will cut one of them-probably RO. However he wants mammo every six months and neither BS or MO think this is necessary. Anyone else getting 6-mo mammos?
To our newbies, I heartily second the recommendation for The Cancer Husband book. My husband really found it helpful and says if we know someone else with BC, we should buy them that book. The patient gets plenty, not so the husband.
My mantra has been the saying in my avatar: Keep Calm &Carry On. I don't always, but I try!0 -
Hi Ladies. Well you know that last AC that I told you I couldn't cope with and wasn't going to have, well I had it today. I'm so proud of myself even if I'm not looking forward to Saturday and the three days after. In three weeks time I will be given Taxol, every week for 12 wks so no doubt I will be freaking again come nearer the time and wondering what the side effects will bring me. You see now what all of your positive and loving posts do to me. Without you I doubt very much whether I would have gone today. With all of you ladies holding my 65 year old hands I feel like I can do anything so a big THANK YOU to every one of you.
Hope you have had a great day. Lots of love and hugs Annie
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I haven't been in BCO for a long time (longer than I realized). I am so incredibly sad about the loss of laurajane, Suze and MBJ. I am also very shocked. I so enjoyed all of their posts and words of encouragement for us TNBC girls. I hate cancer so much!!!! RIP sweet ladies.
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Congrats Cocker! I didn't have the AC + T, I had it all together, TAC, but from what I've heard, the worst part is over for you and your hair might even start growing back!
Hope, I've only had 2 3 month follow up visits so far and YES, both my husband and I get very anxious beforehand, I actually break out the xanax about 2 days before the appt AND I never go to the doctor without having taken one anymore.
I haven't been back to my BS or my RO, I figure the only thing they can do for me is give me a physical exam and my primary does that for me too. I have to make the appts!!! Sadly, my BS speaks broken English so I can't understand alot of what he says and has a terrible bedside manner and gets annoyed if he has to repeat himself to many times , I usually leave in tears for no reason and my RO while extremely nice LOVES to talk about my HIGH rate of recurrance, which I specifically did not want to know but he loves that phase. That's why I've been avoiding them.
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Hi Kittycat - nice to hear from you. Hope you are doing well. Yes, it was a very sad time in March when we gained three new angels.
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Mccrimmon - I only went back to my bs once, six months after surgery and my rads onc discharged me four months after radiation was completed. I only see my medical onc every six months and my GP for a breast exam every six months, so essentially I'm seeing someone every three months.
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Good morning ladies,
I finished my chemo yesterday (T/FAC)! I'm so happy! Now I just have to slog through this week of feeling crappy to get to next week when I should start gaining some energy. The cancer center in North Platte, NE where I get my chemo has a ship's bell (with a rope pull) and a plaque about finishing treatment, chemo, rads, etc. I rang the bell and everyone in the waiting area cheered, clapped and pumped fists in the air. It was very satisfying!
I also found out that I am eligible for a Mayo Clinic clinical trial for TNBC (MUC1?) vaccine in Cleveland, OH. I should know by the end of next week if I will be accepted. I believe that info on the trial has been posted here on breastcancer.org and on the TNBC Foundation website. I will post it here when I don't have to retype every word 5 times and have the brain function to find the links. I found it! but my link button isn't working on the edit screen. doh!
Happy, happy, brain fart day!
Phyllis
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Link to TNBC/MUC1 Vaccine trial: http://www.clinicaltrials.gov/ct2/show/NCT00986609?term=muc1&rank=70
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I just emailed my Onc about this trial.
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Annie - Your last AC, that's excellent! Somehow my last one was easier, just because I knew it was the last one...hope you have the same experience. Also, as others have said, many women find Taxol to be much easier....I know I did....so there's a good chance you're over the worst.
Heather - I never used to get anxious, in fact I found the check ups re-assuring. But now, a year out from treatment, I'm anxious about it. Weird, huh? Also, I hated my RO...she has zero bedside manner, hardly spoke to me, barely answered questions......and when she did, she just scared me! So I'm not looking forward to it and will definitely be breaking out the Ativan for the occasion!
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I believed I enrolled in this trial first before deciding on the Metformin trial. And I must say you will have mutliple doctor appts. I couldn't get it to work with my lifestyle. I know my life is valueable, but I still needed to earn a living.
As I rem. it went something like this Monday was vaccine days Weds. you came back to get your arm read and on Fridays more shots. You get 2 weeks off and the process starts all over again.
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Ewww, I don't know how that would work with me, I'm going to be looking for a new job. Wouldn't be very good for me to have to keep leaving for drs appt. That's upsetting.
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Morning Ladies!! Below is the link to the article about the vaccine
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Cocker, I had the exact same chemo, dense dose AC and 12 weekly Taxols. I was originally supposed to get 4 dose dense Taxols. However, my counts all plummeted after AC, so my onco changed the regimen. I was a LOT EASIER to be on Taxol. I had zero nausea and could leave a fairly normal life. The only issues I had were with my nails. They hurt and turned funny colors. I used tree tea oil everyday on them and always kept them painted. I did not lose any nails. Yay! Also, the steroids made me anxious for the 2 days I had to take them. I took Ativan so I could sleep. You will be OK!
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Another thing about Taxol... I developed neuropathy after a month. I was wearing heels for my sister's wedding and afterward my toes felt numb. Make sure you wear flatter shoes. I told the onco nurses about this and they said heels will aggravate the neuropathy (I wished they told me that before I went on Taxol).
I go into my MO today for my every 4 month checkup. I am nervous and normally I'm not. I still have pain in my right leg over a year after finishing chemo and rads. I've been getting mild headaches lately, which is probably attributed to allergies or stress. Still makes me nervous.
I'm going in for another recon surgery in May to fix what the radiation did to my foob. The last time my PS tried to fix it, my breast turned red. Ended up being "red breast syndrome" from the Alloderm. The foob dropped a tiny bit, but hardened up again. Hopefully this time it will be fixed.
I was up most of thr night last night, thinking about the 3 girls we lost. I told my hubby about it this morning and how worried I am to see the MO today. Cancer, the gift that keeps on giving!!!0 -
Lory, am I reading this wrong? The vaccine was for HER +? I get so confused reading this stuff
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Teh way I understood it, it can be used for TN that have low Her2.. I am looking at my pathology to see what percentage mine is
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I asked the other day at my appt and was told I was definitely in the negative range.
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fighter - that schedule won't work for me either. It will be interesting to see what they say.
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Good Afternoon Ladies,
My surgery went well and I have healed (sort of). The area which used to be host to my left breast has now had 5 surgeries and looks more like a quilt with all the scars, redness, etc. Playboy stopped calling years ago, so no worries, I just don't look at myself much any more. My Mo said that the margins were not quite what they wanted and I still have internal mammary nodes involved. That is what we knew was probably going to be the case so we will use those nodes as an indicator of the success for the next chemo.
The games begin again on Friday. Two years to the day of my bad mammo. Cancer does just love irony! I will be getting erubilin this time. 2 on one off, repeated for three cycles, then scan. I have not asked my MO what stage I am and he has not offered. I guess we both know I am stage 4 now so why talk about it. That seemed ok to me until I looked up the side effects of erubilin. Apparently this drug is used for advanced metastatic breast cancer. Nice! I could have gone all day without reading that. My MO wants to get me to NED and thinks this will do the trick. Here's hoping he is right! This will be my 10th chemo and I feel like I am running out of options. Cancer just fucking sucks! (not in the mood to PG-13 my swear words, sorry).
With that said I generally feel good and am very excited to get started again. How sad is that? Now if I can just remember where I put my "big shoes" so I can put them on and kick some ass!
Best thing that happened to me today: Ok, it hasn't happened yet, but my sister is coming down for a sleep over, last hurrah. We will be hanging out in the yard, eating pizza and washing it all down with some sherry barrell aged tequila. Friday I become a teetotaler. Ugh!
Love to you all!
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Inmate, I will lend you my big ass shoes to kick cancer's ass if you can't find yours!
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