Calling all TNs
Comments
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Minxie: Nothing but positive thoughts coming your way!
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Good wishes for today Minxie.
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Minxie...you are so strong and have been through so much already. Praying that today goes well for you
Maggie
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Hi ladies - Once again I am several pages behind! I had a great birthday but then next day was laid out flat with a migraine. Really?? Turns out that the Tramadol that I was taking sporadically for pain after surgery can cause migraines. Who knew?! Anyway one day for the migraine and one day for the hangover. I got behind on reading!
I got my last drain out on Friday and last night was the first night since surgery without a bandage! OMG! It felt so good! I slept so well that I didn't even have to get up to go pee.
I will get my new port in next week and start the Xeloda and Ixempra on April 22. I went to the bco.org chemo pages and read up on side effects. Yuk! I printed pages and highlighted the SE's that my MO thinks I may experience. This is just in case when my sister comes by to check on me, she finds me belly up and moaning about hand/foot syndrome, mouth ulcers, etc. I'll just hand her the page. Haha, I doubt it will happen that way or at all, but it's a good way to amuse myself.
I have a call in to my MO's office to find out what drugs I will receive with the chemo. That should be interesting.
Phyllis
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minxie - Thinking about you. Hope all goes well!
Phyllis
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Phyllis, hooray on getting those drains out! Your night of sleep sounds wonderful! How many cycles of chemo will you have?
I also pulled off my steristrips yesterday. They've been on since Mar 13th, and hadn't budget, so I helped them off a little. I was starting to have irritated skin underneath from them. It felt so good to not be itchy again!
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Hey gang,
I have a few questions. Can you share you story if you did Taxotere and Cytoxan together?
Does the Decadron bother you all and if so how? I have a very high sensitivity.
What does NED and MBC means? I was thinking MBC might be met. breast cancer
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I did them separately...did the cytoxin with adriamyacin. The decadron for me was a prickle in the girlie parts/bottom that only lasted a few seconds after the injection. Ned means no evidence of disease. MBC could mean either metaplastic breast cancer or metastatic (spread to other parts) breast cancer....for me it is metaplastic
Maggie
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I did have Cytoxan and Taxotere together, at 3-week intervals for 4 rounds.
I think I remember seeing Decadron in my file. I had a Neulasta shot the following day after treatment.
I did have an unusual side effect, that would probably not be common to everyone else, and I'm not sure which item is the culprit. I started with dry hands, and each treatment I developed blisters on my hands. I eventually was referred to a Dermatologist, as each treatment the side effect was more pronounced than the treatment before.
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Stupidboob: I did taxotere, cytoxan and adriamycin all together. I started Decadron the day before TX, and also had a dose in the IV just before chemo and took it for a day or two after TX. To my understanding, it is given to prevent an allergic reaction to chemo and to help your body tolerated chemo. I hated decadron. I slept terrible while taking it and it added to my emotional rollercoaster ride. BUT...I would not miss a dose. I felt that I did fairly well on chemo. I really think that it helped keep my SE's tolerable. I gained 22 lbs. But I ate more fatty foods during chemo. And only felt like getting to the gym on week 3 of treatment. More bad food + less activity/exercise = weight gain. Glad to say that 14 of those lbs are now gone and eating habits are almost where they were pre-chemo. ( I used to love fruit-now not so much)
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Hi Maggie
Oncology visit today was good...dr was not overly concerned with the Metaplastic diagnosis .... He was much more focused on the Triple Neg part.... He staged it as 2b and because of some intermittent pain in my shin and collar bone ordered bone scan and abdominal series CT..... This will put my mind at ease... He is sending everything to Duke for my second opinion and he plans on starting chemo in 2 weeks. He agrees that the second breast needs to come off but does not want to delay treatment now to do so..... He also ordered BRCA testing.... He said if BRCA2 pos he will want hysterectomy before 2nd mastectomy0 -
karietkq: Glad your appointment went well, and it's always good to get a second opinion. If you don't mind sharing, did your doc say why your second breast needs to come off - was this driven by MBC or some other risk factor?
Good luck with the scans, nice he's on top of everything.
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Good you have a plan in hand karie....maybe if it comes back positive you can have both surgeries same time...take surgeons to coordinate but would b nice to b done
Mags0 -
Mags20487 - can you tell me what you mean by "my blood vessels were almost destroyed by radiation" - this scares me. How did you know your blood vessels were affected by radiation? What are the signs of this? I have never heard of it before - is there something I should be talking to my RO about - she never mentioned anything about damage to blood vessels. Just wondering.
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Adagio....sorry to scare you....I had bilateral diep procedure in Nov with a subsequent failure of the left side after 5 days. That flap was removed. At time of the diep the doc did not find good vessels in my belly to use and made the best of what I had attaching them to working blood vessels in the chest. I just had a redo on the left side this time using tissue from my butt (gap flap) which had great vessels in it. The vessels that were left to use in the chest to attach to were way below optimal which doc said was from rads...she did the flap after consulting with my hubby four hrs into surgery and gave the flap a 50% at best chance...well 5 weeks later and she ...my flap.. is still with me... it never endangered my life just my recon
Good news from my mo today...my ctc is 00000!!!! Reason to celebrate even with my hip drain still there
Maggie0 -
Maggie - that puts a completely different light on the picture. Sounds like you have been through a lot - glad things are getting better for you. Now I can breathe more easily!!
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So sorry.. did not mean to scare you
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Luah-
My decision for a bi-lateral was a personal....my mother had breast cancer..... with the high chance of reoccurrence for Triple Negative, I did not want to chance it..... My insurance said no to a bi-lateral....so we did a single....once we got the path report back.... The insurance agreed to pay for the other breast.....but the oncologist does not want to wait to start the chemo so we will do the other breast after we finish chemo and rads.....0 -
Stupidboob- I had Taxotere and Cytoxan every 3 weeks for 4 treatments. The Decadron kept me awake at night and really messed with my eyesight for about a week after each treatment, my eyes were very blurry. I took Ativan at night all through treatment to help me sleep.
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Ativan gave me my first full night's sleep last night since I started chemo four weeks ago.
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Hi!
I have been reading but haven't posted in awhile. I just passed my 2 year anniversary of diagnoses. I had a followup with my surgeon, but I have a follow up scheduled with my MO in May. I am terrified! I know he will order scans, bloodwork, including tumor markers and will try to put me back on tamoxifen or something because I am 3% er positive. I tried 2 different medications and they both were very rough for me, I really do feel for hormone positive gals because that is no picnic either! I missed my last folle up:( Just been in denial or something, just want to forget about this big cancer mess.
My surgeon said I can start thinking about reconstruction, but I do need to lose some weight first. I want reconstruction but worried about another surgery, as I will have to have diep or something similiar. I feel like I am still recovering from my hysterectomy from last October.
For those who don't know me yet here is a little bit of background-I was diagnosed with stage 3 or 4, there was some dispute because of one of my positive nodes was in the mediastinal area, which would make me stage 4, and I also had a few internal mammary nodes positive but no axillary nodes were positive. The positive nodes were inoperable, but I had a complete response to chemo. My last scan was in August and everything looked good then. It was only a ct scan, my insurance decided they did not want to pay for another pet scan or bone scan and I did not push the issue because I didn't want anymore scans.
As always I tend to write a book!
Maggie-glad to hear that your surgery was a success!!! Sounds like you have been though so much with reconstuction. I am still debating, but I am sure I will do it if the doctors will!
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Bak...I have no regrets on my recon and my case was extremely complicated as my doc yrs ago who did my c section cut and clamped all the mzjor blood vessels in my belly leading to my complications. If you are considering diep I recommend the docs at NOLA if you can swing it. Amazing facility there and they work with you regardless of insurance. Do lots of research too! As with the mastectomy it must beyou who chooses to proceed! Happy to "see" you again
Maggie0 -
Bak,
Deep breaths. Of course you are scared about more scans. Will we ever not be scared? I'm glad you have been doing so well.
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Bak94,
Did you have IBC?0 -
Marianne53- I did not have IBC, just locally advanced IDC that was triple negative. It was strange how my tumor spread, it wasn't huge or anyting, about 2 cm, it went to the internal mammary nodes instead of axilla nodes, maybe because of location, deep and towards my breast bone.
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Bak - I'm sorry you are feeling anxious. I hope your results come back swiftly and that you have peace of mind for a long while.
I was ER+ the first go round. I had to stop the tamoxifen after a year, it just made me feel too badly.
Wishing you wonderful results! Take your time on the recon. You've been through a lot.0 -
I'm recovering today from yesterday's implant surgery. The odd thing is the most painful area is where he pulled some fat for fat-grafting. It was my muffin-top, but more right over hipbones on the side. Anyhow, that hurts worse than the breast by far.
Bak, I hear you - I have nightmares about scans. I start to cry whenever I see one of those giant medical machines. I've been doing a great job of avoiding them for the past year! So I will probably not offer the best advice - but good luck with whatever you decide to do!
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Final Taxol is tomorrow. Then appointment with RO on Monday to see when I start my radiation journey. I've had a pretty rough week with SE's this week so I'm really glad tomorrow is the last. Maybe in a couple of weeks I will be feeling a bit better. I don't really want to go to work today but I have 3 meetings one of which I have to lead. I'm hoping I can leave after lunch and do the last meeting via phone. Sometimes I think I should have just taken leave. My job is very stressful, but my employers have been wonderful. Even my new boss of one month who is totally new to the company has been very understanding. I can work from home when I need to and leave early if I need to but it is hard to get away once I'm there.
Ok just putting off getting ready. Got to run. I hope everyone has a good day.0 -
Bak,
Praying for good news for you. Hugs...Marianne
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thank you all for sharing................I just feel so scared all over again. I was hoping (like us all) to NEVER be faced with this demon again.
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