Starting Chemo September 2015; join us!
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Cajun: Its super annoying to have two different kinds of cancer because all of the statistics don't really apply to me. Its not very common. Neither is Palb2 though so . Yah for me I guess.
If I could have it my way I would do Tamoxifen for 3 years and then AI to try to preserve as much of my bone mass as possible but hopefully I can find a way to contact the effect of AI on my bones and heart. Right now the plan is to start Arimidex the minute I finish surgery. They want me to do surgery right ASAP.
right now the theory is that Palb2 acts similar to BRCA2 but they are not sure. They will not know the data for 10-20 years. Both my gyno MO and BC MO think I should remove my ovaries and go on AI. The only possible reason I have to do a hysterectomy rather than an OO is that I will not be having an orthoscopic OO. they are doing an open abdominal so that I can have reconstruction at the same time. It reduced my time on the operating table from 9 to 5 hours. Also I will stay in the hospital 2 days instead of coming home. Basically I am choosing the more involved surgery at the same time rather than two separate easier surgeries. Also they will send everything to pathology and make sure its clear.
This is for insurance reasons as I change to a crappy insurance in January( no choice its employer driven). Also I am hoping that rather than do two separate surgeries spaced apart I will be able to recover and enjoy the spring and summer exercising and hiking with my family.
I still haven't decided on the hysterectomy( take out uterus/cervix as well) vs OO I am researching it right now. A part of me never wants to have a pap smear again. Really I haven't found a strong reason to justify it though. If I were having seperate surgeries I would just have the OO
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it does feel like forever. The good days are few and far between. I knew chemo would make me sick, but I had no idea how hard it would be.
Is anyone not having neuropathy on DD Taxol?
I can't imagine entertaining 13 toddlers, God bless you!!
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2 DD Taxols left. One this thursday and the last 2 weeks from then. Neuropathy has been easy on me and that's a lucky break, considering the intense joint pain and fevers I've endured. I've got a bit of neuropathy in the index and middle fingers of both hands and weird, strange skin peeling of those fingers too.
I will be getting labs done and be seeing my MO tomorrow. We had discussed how if it was still painful, that she would reduce the DD Taxol by 20% if I wanted...well....I WANT!!!
Maybe it being so close to the chemo end, maybe its the upcoming holidays and my not being able to eat a cookie, let alone bake one...but I've had enough. Will see how this goes for round #6 of 8.
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My neuropathy after one round of DD Taxol has been within the acceptable ranges. Most cleared up, but it's lingering in the middle and index fingers. Also some mild discoloration in a couple of nail beds. I'm getting Taxol now, and am getting two more before the end of the year.
Recovering from a MX and ALND was more annoying than hard, especially compared to chemo. Reconstruction next year will be harder physically, but easier emotionally because they'll be putting me back together. I'm very much looking forward to passing for normal again
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what kind of reconstruction are you having, Scotland? Anyone know how long you can have tissue expander? At first I thought I would to do lefty a year after rads but so much surgery in 4 years makes me queasy.
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Had Dose 6 of Taxol yesterday so halfway through this stuff! My labs were slightly improved over last week's. Not quite up to the normal range of WBC and RBC but they were higher than last week. Platelet Count and Neutrophil, Absolute are much better and within normal range now. Bunch of other things that I have no idea what they mean.
Still have the runny eyes left over from the AC but the sore thumbs are slowly getting better. You know you're pathetic when you have to get out a pair of pliers to open a zip-loc bag! Granted, it was a heavy-duty dog food bag, but still...
Congratulations to everyone who is moving along to the next phase! I hope you'll keep us posted on your progress. And sorry for those of you who are delayed for various reasons. It can be so frustrating when you're trying to keep an end in sight and waiting to see how your new "normal" life shapes up.
Grey, I do hope you can find a more compassionate MO. It could make a huge difference in your outlook if you had a better medical support group.
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I'm planning to have a MX on the good side, plus do reconstruction on both. Although I haven't decided on surgery type, the BS said that implants would probably work best for me. I started small (a B on a good day), and will stay that way. I may even be able to do direct to implant on the non-cancer side. But until I finish rads and talk to a BS, it's all a guess.
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Luz, I'm so glad to hear that someone is moving right along with Taxol.
Everyone says it's "easier" than the AC, but so many of us are having issues. Scotland, I had direct to implant on my non cancer side. It was much easier with no ALND and a speedy recovery. Wishing you the same!
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I will GLADLY ship The Poop Fairy to whoever needs her, like RIGHT AWAY! ---I swear she brought all her sisters and cousins to camp out here today
This is weird this late after my last dose, but pretty much everything about life with BC is weird, so I guess that's life now (Edited because I apparently can't write anything without a ton of typos
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Unfortunately, I think we have to expect the unexpected now. Sorry, tessu.
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Did the rads sim today. I had to do one on my stomach and one on my back and they will confer and decide which way is best. My back started to cramp about 2 hours in. It's been a long day. I've got 12 new tattooed freckles and got groped by 3 new strange men. I need 36 treatments in all. I should hear back from them in 7 to 10 days to find out when it starts.
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The treatments are 15 minutes but that from the time you get there till you leave so the actual radiation is pretty fast. Today was scans, lining up the machine, getting it all just right.
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the face down one has your boob poked through a hole and swinging like a national geographic photo! I hope they pick the laying on the back one.
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I have my sim in a couple of weeks. I'm going to hazard a guess that since I had BMX, I won't be lying face down. (nothing to hang through that hole except my TE) hahaha..I was told that I'd have to hold my breath for 30 seconds. Hoping they exaggerated that number so I'd be ready to do 25. I've had trouble with my breathing and stamina since I started Taxol so I don't think I'll be ready by the sim date.
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My sim should be in about a month. 30 seconds is a long time. Maybe we should all meet in Tahiti after this is done for umbrella drinks and pearl diving.
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The breath holding wasn't as bad as I thought. Surprisingly it's easier to hold your breath while on your back with your hands over your head. Who knew?
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Lindy & Scotland when are your sim dates. Mine is Jan 5th.
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Annie thanks for sharing your rad sim experience. I feel better after hearing how yours went. The fall rad board is still scary for me to read after seeing pics of one woman who was pretty badly burned. So I'm only reading the winter boards so far. I figure they are about to start rads and won't be showing any burn pics yet. I have enough trouble sleeping at nite.
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i was assured that it's all highly computerized and burning isn't going to happen. Red skin like a slight sunburn but that's it. What kind of crappy RO would you have who burned you with all this technology?
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ok Annie you are helping me keep calm about burns. My ro said she would watch my dd's like a hawk. She assured me that the team would be all over my boobs. Haha. Just a suggestion for all don't go looking at pics of boob burns before bed.
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In fact they are giving me a cream to use twice a day so I don't even get the sunburn.
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The upside of a mastectomy is that I would probably barely feel a burn. I have almost no sensation from the incision on down. The PS has already warned me about the cosmetic effect of a tissue expander after extensive radiation. I could care less what it looks like right now, GET IT DONE!
In positive news, my fever is gone.
so hoping that my counts will be high enough for teatment Thursday and not Monday. All this running to stand still makes me want to punch somebody (or is that just menopause?).I'm going for my post A echo soon. Did anyone have a change in EF?
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Shopgal ...my sim date is Dec 10. My last Taxol infusion is Dec. 17. My RO told me on my first visit with her a few weeks ago that she will give me about 3 weeks off after chemo before starting Rads. That will be mid January and I'm getting 5 weeks (25 treatments)
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Annie, when are you having your ooph? Will you be taking tamoxifen prior to AIs? They want to schedule me about two weeks after rads finish but its supposedly a pretty easy surgery, since they do it lapriscopically. If it goes out more than 2 weeks, I will take tamox. to bridge the gap.
What are you ladies doing for follow up care? My MO uses tumor markers but has said they are not very reliable. He said it's basically based on symptoms going forward but if the markers are awry, then insurance will authorize a PET. I'll be tracked by his calendar and also according to the clinical trial, which is 10 years or until the cancer comes back.
A lump or unrelenting bone pain... That's basically it.
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I'm doing it after rads. I'll get the Lupron and AI until I get the ooph done. For follow up I have to see my BS every 4 months for mammogram and exam for 2 years. Then every 6 months for 2 years. Then yearly. I'm also doing tumor markers and other blood work to track all the meds SE.
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my last chemo is on new years eve day & my rads Sim apt is in mid January and I start rads on 1/27.gosh after reading some comments I may call and ask for more clarification on the Sim apt and the first apt.
I would get an echo cardio after radiation and before a trial I qualified for. MytallWe haven't gone over follow up scans or tests yet. I imagine we'll go over that closer to. I know 1 thing no more mammos. I got one nipple and no breast tissue.
Lol not too bad to only have 1 mammo in my lifetime
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hi everyone! I haven't been around since the 22nd. We went to NY for Thanksgiving and just got back on the weekend. Today I had my tear duct stent surgery. It went well but it does hurt. I can't keep my eyes open for very long and need to ice them 30 minutes every hour for 3 days. My chemo is put off from this Wednesday until next Wednesday so I can heal. I'll be back to catch up over the weekend.
Hugs to everyone who needs them, we will get through this together!
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My last chemo is December 29, so I'm guessing that my sim/rads schedule wil, be similar to el tigre's. When I had my meet and greet with the RO before my MX/ALND, he thought we'd do 5 weeks of rads plus one week of boost. He also said that there would be no bad burns or blisters. Maybe if the cancer had grown in to the skin or chest wall they'd have to be that aggressive
I don't have a plan for follow up care yet. My MO has gotten tied up during the last two chemos, and the PA didn't know. I'll need a follow up EKG to see if chemo damaged my heart (otherwise why do the baseline), and they'll have to do some follow up scans for the "it's probably not cancer" nodule on my lung.
Cajun: excellent news on the fever!
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Scotland, we are all praying for you and supporting you during this wait. No mets, not gonna happen!!!
Mom2, gentle hugs for a speedy recovery.
Off for blood work and a 5th neupogen shot.
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southern, I woke up with a wet pillow due to night sweats. hurrrrray menopause!
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