February 2012 Chemo
Comments
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Jag
I wish I could give you some pearls of wisdom here. I'm glad you have an ONC appointment today though so you can address it right away.
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Hey everybody,Well I need to get out for a walk today for sure, the exercise definitely helps with the bone pain I find. Since I had to have a Neulasta shot this time, I expect it to be worse than TX 2, which is a bit of a bummer. But them's the breaks.Re: LE and wearing arm sleeves all the time. This is news to me, as well as to several friends of mine who have already been through this process. I'm going to have to research.FaithHope, I was just reading about the microfat grafting and it sounds very interesting. Are you using the BRAVA system as well?I have a TE in, basically has a place holder. the PS didn't want to do an immediate reconstruction as I was having RADs--he figured we might as well radiate the temporary implant since it was coming out. I still haven't decided about the permanent solution; I like the fat grafting idea, but not sure it's done at DFCI. Looks like one has to travel to places like Miami or NOLA for it, but I still haven't done much research in this area. How did you come to decide on this procedure?0
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Hildy - yes, it will be with the BRAVA system. I'm about an hour and a half from Miami so it is doable for me. Dr. Khouri in Miami is the one who invented the BRAVA system so I was able to schedule with him. From what I understand he spends extensive time teaching the method around the country and there are quite a few drs/centers that are adopting his method. I looked into the DIEP as well, but although I have enough fat to spare, there really isn't enough in any one spot. Which would result in a stacked DIEP with multiple incision sites. What I liked about the fat grafting is that the incisions will be very small. Nothing is a perfect solution, I will need to wear the brava bra for 4 weeks at a time leading up to 2 surgeries. And, I will need spanx like garments for 4 weeks or so after each surgery. I can barely tolerate tights or hose for any period of time. But the end result will be breasts with my own tissue. Currently the retention rate is 85% of the fat that is injected. I'm not looking to be huge, I'm currently a full B and would like to be a small B, but that is my choice not because of limitations with the procedure.
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My doc didn't have much to say said didnt really matter about the pathology rot being different and she just wants to watch the lump. No tn trials around here and dont qualify for brca testing. Now i'm just rotting in the chair for 4 hours.
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dipad - So far moving my head to the side as soon as I lie down is keeping me from spinning.
I did not get tattoos - I have sharpie marks that are covered by a clear band aid type covering. They told me if they fall off they will put new ones on. I told them no tattoos for religious reasons but I don't see why what they did on me they can't do for anyone who wants it.
Gayle
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Jag- I am sorry for all the issues you are having. I really hope they get better soon. I hope you have small SE from this tx.
Gayle- thank you for the small hope. I had a minute breakdown today about everything going on and told my husband. he said he thought the RO said they would use a sharpie too. that helped but I will ask to be sure.
To everyone else I missed I hope you are doing well. There are a couple we havent heard from in awhile and I hope all is well! Post a hi when you can
** pity party? alert**I am having a bit of an emotional week and I think the kids are picking up the mood so I guess I better snap out of it. Son is acting up being defiant for a 6 yr old.. my daughter is being overly emotional and had a crying breakdown at gymnastics tonight and said she wanted to quit. Gymnastics has been her life for 3 yrs as she competes. I told her lets give it a little more time and then if she wants to quit she can but I know she loves it just had a bad day.
Me? I dont know but my mind feels consumed with the BC lately. I have the feeling that I have been so strong and positive this whole time that I am just now "tired" of having to do that. my mind is heavy and my eyes "leaky" with tears. I have tx#5 tomorrow and am dreading the days that follow where you feel horrible. Everyone says this is one of the worst. The meetings with my surgeon and my plastic surgeon have me terrified about the pain and recovery and I havent even really started to think about radiation! and of course the bills are starting to come in and my insurance of course messed it up in the beginning. ANYways.. sorry for the whine, I just dont know where else I can let it out. I dont want my kids to suffer and my husband already has too much stress on him. So you my virtual friends are the lucky winners
Thank you for letting me express myself.
I wish everyone sunbeams, pleasant nights sleep and little SE.
hugs
Jen
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(((Jen))) vent away. It's easier for us to help hold you up, then for family. We are just a step away and it works. Pity parties are allowed here, and if it lasts too long we will let you know.you need more help. That'd what this board is for .
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Jen - vent, vent and vent. I feel exactly the same, I am more emotional and anxious now in the last two weeks of chemo than I was in the first weeks of chemo...it is very overwhelming. We nearing the end of a milestone, but have a few more to go. By Friday, I will have had an apt with a LE therapist, an apt w my gyn, chemo and an ultrasound on my ovaries all this week. And, I have no lashes to absorb the tears when my eyes well up! I am so thankful for the bangs of my wig
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Jen
I agree totally with Moonflwer. This is the place for it. Where else can we really let it ALL hang and and we do. We do get tired being strong for everyone else and sometimes it fills up where it can only come out of our eyes.
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Hi everyone,
Jen- i was like that a few weeks ago as you know but I feel so much better now. I think it will be like this on and off till we finish. My biggest worry is the drugs they give you after to keep it at bay.
Will it reduce my sex drive, do they have horrible SE blah blah blah.
My middle daughter got a place at the college she wanted to do A levels.
Youngest daughter's parents evening went well.
Hubby's off I'll with his bad foot again so I had to look after him. OMG what a baby he is.
Going to the hospital with my sister-in-law, six months we have be telling her to go as she has white tongue. Even the dentist told her to go, anyway I'm taking her today.
When DH dad has to go to hospital apt I have to take him which is all the time.
When I think about it I'm always at the hospitals or doctors with someone.
DH family are not got with hospitals or worry, well I'm not but I have too.
Saw a few friends at parents evening and news travels fast, everyone knew but they were great and said nice things.0 -
hello all - I am feeling better today except for a funky feeling tongue....any tips for making that better?
Made my RO appt for when I get back from Florida on the 8th, no idea what to expect. Here are my thoughts, concerns I plan on asking about.....
1. why Canada is it normally 16 TX and in the USA we get 33 TX
2. Is tumeric a good thing to take to prevent skin dermatatis
3. what is th best way to deal with skin issues
turthfully I am terrified about Rads, I am fair skinned and large breasted, thikning this could go south pretty quick. Any tips or suggestions we can give each other is hugely appreciated. I dont think I will be starting until the end of May but still, it is coming.
Fatigue is still here, feel like an old lady. yesterday was so much better but it was funny. Walking even from store parking lot to the store and I was wiped out. Not sure if it is the end of chemo and just cummulative or if it because of no Nulesta this time.
Oh yes.....here is the big question?????How do we start rebuilding our bodies from this chemo??? our blood counts are all whacked out, many of us are now anemic???How should we heal our bodies and what should we be changing about what we eat and do every day to fight against recurrence??
Just thoughts and concerns and no group I would rather be sharing them with.
(((HUGS)))) and wishing small SE to all
so glad so many of you are finished and can't wait for everyone else to catch up
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mthrdee- I've been researching a bit about diet after chemo. The main thing I keep hearing is to stay away from sugar. It fuels cancer. The only sugar approved is Stevia. I've also been looking into the raw food diet. It's supposed to be helpful with cancer reaccurence. However; it is a tuff diet to follow. 80% of your diet is raw food- veggies, salads, etc. I love my pasta and bread and chocolate! I may try it to some extent. Anyone else look into this diet?
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gritigrl - I know you had tests this week - any news??? Fingers crossed and sending good vibes your way
(((Hugs)))
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dipad
raw food - while i dont mind it - i do not think that realistically I could handle it long term. I am thinking along the lines of something I could really do for the rest of my life. even cutting out sugar seems unrealistic. It looks as if almost everything we put in our mouth has some form of sugar in it. I do plan on trying to up the fruit and veggies that I eat and I am not a red meat eater anyway but still it feels that there must be more we can do.
I think I need to start by getting my body into a healthy BMI level, that will entail losing about 40 lbs and that in itself seems like a herculean task especially when I start taking tamoxifen but hopefully if we all continue to be each others cheering section we will all get there.
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eyebrows?who needs 'em? evidently, i don't cuz mine fell out last nite as i was getting ready for bed! damn chemo anyhow.....
jen...sending mega hugs..simply going thru this with kids warrants a medal for any of you--this is so hard! everyone is right-vent here!
ok-daughter told me yesterday that they are waiting fro CFO to sign off on papers to hire me and that they need to find a place for me to sit!!! sooooooooo "the job" is getting closer.
on the home front- we woke up yesterday to a flat tire on each of our vehicles- no coincidence! called police this time- and am looking seriously to move ASAP.......police said it's kids-mischief--sorry- the othe incident was only 3 weeks' ago and no one else in our parking lot seems to fall victim....
much as we hate the logistics of moving i think i may have found a temporary fix- a month to month rental til the really nice apt comes open in september...just waiting for landlord to return my call- gosh i hate waiting!!!!!
so--sending hugs and positive vibes......
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oh-raw food- i am craving salads.....
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Lumpynme - are you saying they just disappeared???? I was looking in the mirror yesterday thinking I was looking weird and old....and that's when I realized that a whole lot of brow was missing again. Mine are ridiculously thin and patchy..no longer the same shape or length..short of throwing some superglue on them I'm freaking that they may disappear completely. Did you actually have some and then go to sleep and wake up with them gone???
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mtherdee
I can't answer alot of your questions, but I'm looking at cleaning up my diet as well. I don't know that its realistic to avoid sugar in its entirety. What I'm gong to TRY my best to do is eat organic where it makes sense and is affordable like the list of fruit and veggies that are thin skinned and will absorb more pestisides than thick skinned. I'm going to try and source local organic meat and such and fill up my freezer, that kind of thing. I think life is to precious to totally give up treats and to be honest I was never a sweet freak at all until my DX. I resolve to do the best I can.
I don't know who gave you the info that in Canada the standard of care is 16 RAD sessions, its simply untrue. It totally depends on your DX. Any of the ladies I know personally that went through it and one is starting in 30 days have or will have had 30+.
Lumpy
I hope you get good news soon regarding the job, it's sounding promising!! Then you can get the hell out of dodge and into new digs. Oh yeah the eyebrows, mine are super thin and sparse and apparently its normal that they fall out after finishing chemo. Something about the timing of chemo in relation to the cycle of our hair growth. I must say that I have become very good at penciling them in LOL! I was looking at an old picture of myself from the 80's when thick brows were in. Man I had good eyebrows!
firstcall
Ok so I attend my appointment this morning that the RO scheduled for me. She begins by telling me that she has not made a definative decision to recommend RADS for me as she wants to reveiw my case with the Tumor Board if I would allow her this indulgence. I nicely reiterate that this was the same conversation we had in January. Well she never did take it to the board. She also went on to say that it still may be indicated upon reveiw because although my tumor wasn't big, there were 5 (3 were microscopic) and that since they were near the chest wall coupled with the fact I'm HER+...This is when I got irate...I said, they were NOT near the chest wall at all, all were CENTRALLY located with a margin of 17mm from the tumor site and 11.2 from any DCIS and quite frankly as it sits, I in all likelihood will not be consenting to radiation although I do want to hear the opion of the board for my own peace of mind. Have you taken into consideration I'm getting Herceptin for a year? No she hadn't. She then went on to say that she wanted my surgeon there for his opinion as well and named the wrong surgeon (my surgeon doesn't operate out of that hospital). She is now going to call him. I'm of the opinion with this RO that she cannot make a decision to save her life unless it's PRO rads LOL! I already know what my surgeon's opinion is which is no RADS, this he told me already. My MO indicated in our first meeting no RADS even though I feel he is being politically correct in defering to the RO. In meeting with the Sr. MO last week, his opinion is for sure no RADS.
I've had nothing but the best of care throughout this whole process from my GP through to my MO and everyone in between. Unfortunatley I have little faith in this RO though. It would appear to me that she will defer to the majority and at the end of the day, they will be doing her job.
Edited to add;
I also asked her if she could point to any study or national guideline that would further indicate RADS with my pathology. She said she could not. She did say in closing "That she was glad I read stuff". OMG I nearly burst out laughing.
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A happier day....last T/C tx as I type. Now only herceptin for a yr. My concern is my oncologist is sending me to a cardiologist. Hoping everything is normal.
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Msbelle
Yay, another one done!!! Ring that bell loud and proud. I'll be having Herceptin for a year in total starting in 2 weeks. I also have a SIMA test (same as MUGA) test scheduled for May 3. I also had this done prior to TX. This is standard as the Herceptin TX can affect the heart and they need to keep an eye on it. The first test is the baseline and then they can tell if there is any ill effects from Herceptin. I will be tested every 3 months. Its a good thing Msbelle so don't stress about it. I'm also told that any ill effects are reversable as well. Worse case scenerio they would stop the Herceptin TX.
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Msbelle - mine sent me too - don't worry, I think it's just a precaution.
Can anyone tell me what would take radiation off the table? or alter the original plan? Originally, I was to have radiation, the recommendation was lumpectomy and rads were the best way to go. no positive nodes but I had LVI and they didn't know to what extent. RO had said it would be an aggressive radiation...whatever that means..since I wasn't listening at that time. If I had an mx, they would not radiate and they felt that was necessary because of the LVI...but now since I had chemo, I'm wondering how that might change things if it does at all. I mean does adding in the chemo do anything to change the game plan on the radiation?
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I am a little worried because I have already had my baseline cardiac workup and 4 doses of herceptin. I just hope I can continue the herceptin. I want to do all I can to fight this for good. Never want to go thru this again!!
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Jen - sounds like we have some of the same issues with bills, insurance and I seem to have a few melt downs a month. I think I've got the timing down to certain days after tx, I have a pity party for one as I call it. My husband is more stressed than me. We don't have young kids, that has to be so much harder to deal with, I don't know how you all manage that. It just seems like you get over one hurdle and there is always another waiting for you. I have 2 tx left and trying to take it one day at a time, not thinking too much about rads yet. I think that will mostly be sucky driving there everyday. I'm going to watch my new lump until the chemo is over and then if my OC won't get me a mamo or ultrasound I'm going to my fam doc and pitch a fit til I get one, maybe I should save some steroids for that day, lol. Hope everyone has a great day!
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My oncologist just called. apparently the scan showed that the masses has shrunk on my liver but they aren't gone. so right now she's ordered 6 more chemos. i am very, very sad about this. i so wanted to stop chemo and get my energy back. i am whiny, tired, and a bit overwhelmed. oh, well. nothing i can do about it. it's either more chemo or death. this sucks.
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Gritgirl, great news they have shrunk some don't at any cancer stage. I'm pleased mine and yours have. It sucks you have to have more chemo but that means more shrinkage.
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Yeah, Ali. You're right. I am lucky that it's responding so well. At the same time, I'm overwhelmed. I live alone and frankly have been feeling like I've worn out my welcome with my friends. At this point, I figure I'll just go it alone, order groceries online (which I have been doing) and just carry my home alarm panic button around. My friends have been helping alot but I they have their own lives. I'm so damn tired of laying on my couch and really damn tired of the side effects. I had gotten my hopes up for this being the end of that road. Eh, life isn't what you want it to be. I was hoping for really good news. I got good news, I just had my hopes set so high. I can't change it, I can just be bummed about it.
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I know it's hard Hun but you are doing so well and it will pass quickly I hope.
My sister-in-law got the all clear for tongue cancer and I was a little pissed off because I have cancer.
Anyway we will get through the chemo and do the happy dance soon.0 -
Meanwhile, I think I'll go home and cry. About the best I can do at this point.
Tongue cancer ain't nothing compared to what we're going through, btw. So thpppt on her. I stuck my tongue out to do that. It's part of me that doesn't have cancer. Nyaaah. See? I did it again.
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Grit girl- been thinking about you! I am glad the chemo has helped shrink it but really sucks that you have more to do. Go home and have a good cry! you deserve some me time and a "this really sucks" time. I was there this week with my own version and all these wonderful people reminded me that we are all here for one another.
MsBelle- YAY!!! Glad you are done. heres hoping for small to none SE!!
Christina- you had tx5 today too right? how are you?
Ali- make sure you take care of YOU first before you drive yourself crazy taking care of everyone else. YOU deserve it most of all!
AEM- I am by no means an expert or knowledgable on rads. Originally my MO and BS said I wouldnt need it because my lymph nodes were negative and i only had tumors on my right side. However the RO said I was in the grey area. I had a suscipious lymph node that wasnt nice and smooth and although the biopsy came back neg.. she didnt believe it 100%. On top of that they found 7 small tumors.. so the multiple tumors to her was a red flag that maybe there were more small small tumors that arent visiable yet and she wants to get it all! She says she wants me cured... Sooo thats my story on why my RO wants to do rads. There are some good threads on rads that might help out. I find other peoples personal experience better than some of the medical mumbo jumbo.
Firstcall-- how are you??
I had to have a laugh today. I went for a very long day of chemo tx #5.. On the way home I did the grocery shopping while I still had some energy and no kids with me! You know when you get the receipt printed out they sometimes print out store coupons with it? Mine was for hair coloring.. I was like really? I have no hair. Then on the way out of the store they have a few shops in there and one was for eyebrow threading and the lady stopped me and tried to get me to come in. Again.. really? I have lost over half my eyebrows. The irony of it all.
Thank you for everyone who let me vent and have my pity party when I was feeling down. I am better some but still just feel so overwhelmed now that I have to think about surgery, rads, and reconstruction. Before it all seemed so far away and now i am being thrown into it.
I have my 3 month echo cardigram next Thurs. First one I have had since I started chemo just to check and see how my heart is doing. My blood pressure was up today but nothing horrible and I am sure stress and anxiety helped that. RBC still low but stead and my WBC is high enough that the nurse asked the dr if I could have a salad today. Been craving one this whole time and havent had one since Jan. He said since my count was high I could have one TODAY...so i called my husband and made him bring me one for lunch right then and there!! it was delicious!
I had a mammo a bit ago but havent seen my MO since then. He was really happy with the results and said the chemo is doing well and shrinking or killing it all. that was happy news
Sorry for writing so much! Time to go plan my salad for dinner since I only have 1 day
Much hugs and sunbeams to all!
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gritgirl
I know the news is hard but its not all bad, at least the chemo is working and shrinking those tumors. Your real friends will be there for you don't worry about overburndening them even though that seems hard
Ali
Sounds like your SIL has thrush
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