Calling all TNs
Comments
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Hi to everyone. I will never have my hair long again. Not this short but a new short style when it grows back. Chemo postponed - low bloods but i have already worked the extra hours and MIL coming over so Holiday for me now.
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Hey Gang,
It is me again............:) I still have not read the post and for that I am sorry. I have been reading on the treatment link. I have to start Taxol Thursday and I am so SCARED from all I have read that I am just wanting to call it quits. Everyone keeps telling me I can't, because I have to fight this will everything I can. I hate to drum up this subject again, but I need help in dealing with it.I will read the post soon........I have just been in such a funk with all the side-effects and just feeling yucky and scared. I am scared that with the Taxol if my feet go numb I will not be able to get in my pool or even walk. I am scare of everything about it. I was told that I have to get Tagament and so I bought some over the counter to make sure I was not allergic to it and to take one fear away, but guess what LIKE NORMAL.............IT MADE ME DIZZY. I am so sensitive to meds and this only adds to my fears. I have a call into the Oncology social worker to help me. I have a call into one of the nurses and still waiting.
Also, with reading I have seen where some say to figtht for the Abraxane instead of the Taxol (the same) just no chemicals to be allergic too. If my doctor denies this do fight for it by getting another doctor or go with what he says............I don't want to just give in, but I also don't really feel like switching doctors. I AM TIRED!!! Just ready to give up all together, which is making me and my hubby miserable. People will say, either do it or swivel up and die, those are your choices.
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Lovely face did you say you are 7 months PFC and only have 2 inches of hair??? Oh goodness I was getting my hopes up too high I better change my thought pattern here.
Over all still feeling sore all over with heavy arms and legs and no energy wish I wasnt working. Feeling depressed too with the weight gain sorry to complain but DH doesnt get it cause the chemo is over so he is waiting for us to get back to normal....wonder how I do that?
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Lovelyface............thanks for the well wishes
I am in the same boat as you...........I am to emotional and since I suffer with anxiety, they all say well I think alot of your issue is anxiety.
I tell you what I could go in and tell them my toe fell off and they would say, well if you were not so anxious about things. Makes me want to say, idiots my freaking toe is hanging off and it was not because I was anxious. When I get mad I cry and then this makes me look that much more emotional.
I hope you feel better soon. I totally understand your feeling about not belonging anymore
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KYMN that is what I keep saying.............that when the chemo is over everyone expects things to go back to normal in all ways, but it is never over for us, the patient
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Stupidboob: Please try not to stress about the taxol. Everyone is different but I know many, many women who went through it without any serious SEs whatsoever. I did 12 weekly taxol and it was VERY tolerable - I pretty much felt like normal. I worked. I worked out. I skied every weekend. My hair began growing in. I had some slight tingling in my fingers for a couple of weeks and a bit of a rash on my hands, hardly noticeable. My fingernails darkened and a couple of toenails eventually fell off. That was it.
I'm not saying you will be the same, but please know that taxol is very doable. You will get through it!
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mccrimmon324 I thought the same thing when my mother fought lung cancer. I tried to be so positive for her that I would not allow her any negative thoughts either. I WAS WRONG!!! I can't change it now since she left us in 2003. I miss her so much. Now that I fight this ugly monster I know my mom wanted to slap the crap out of me, with all my positive stuff I tried to throw at her. I get so sick of all the "positives" that I want to hide..............I know we have to stay positive, but sometimes we just need to have our negative moment. I hope things are looking up...
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LUAH...................thank you so much. Do you feel that doing it weekly helped? I am to do it every two weeks and I have been reading it is better with weekly treatments
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Titan glad your son's surgery is over.................never hurts to have a good looking doctor....:)
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Kymn - yes, unfortunately, in 7 months post chemo, I have only approximately 2 inch long hair. It does take a long time for us to get our old hair back. I had thought the same thing, that I would have my own hair by the wedding on June 18, but no way. July is my 7th month and I am still wearing a wig to work. I did not have courage yet to go with the short hair to work, so am wearing a wig today. One of these days.........I hope.
Stupidboob - Luah is correct, please don't stress about Taxol. I did dose dense Taxol, meaning I took it every two weeks. During the treatments, I felt very normal. It is very doable. You won't be allergic to it and you will be just fine. I am a very highly sensitive patient - to all meds. I am one of those people who doesn't take any medications because of SE's. But even I was able to tolerate Taxol. I finished Taxol last Dec. 28. Just now, in July, I am beginning to have lots of neuropathy. I know that aridimex has caused this, but the Onc. tells me that the numbness in my fingers is not coming from Aridimex or Zometa and that it may be coming from Taxol. I strongly 100% disagree with him. I feel that aridimex greatly reduces estrogen in a woman's body, therefore, flaring up all areas of the body where one has weakness in joint, spine whatever. I feel so damaged these days due to the neuropathy.
So, please rest assured that you will be just fine with Taxol. It is actually the easier drug to take in. Don't stress so much, you will get past this time in your life. Just try to be comfortable, watch lots of movies, exand your mind by reading and trying not to read up too much on BC. Just know enough so that you do the right things. I was scared of Taxol myself, but it was the easier of the two durgs, it was very doable. Life is throwing this BC to all of us, every 7th woman is diagnosed with BC these days, so we just have to deal with it just as we strong women deal with bad marriages, bad boyfriends, sick parents, sick children and just as the whole world's problems falls on a woman's shoulder, a common thing everywhere. When all is done, then you can concentrate on taking the toxins out of your system by exercising and doing all the healthy things, post chemo.
I feel that each person's destiny is unique, therefore, please don't connect your mom's destiny to yours. Your cancer is completley different and I am certain that your destiny will be different. You WILL get past this soon. Time flies and this shall be history one day. I hope you can see the light at the end of the tunnel.
I do understand what you are saying about being positive. I do not ever pretend to be positive when I am actually not. I am a realist. I cannot be one way in my heart, and pretend another way on the outside. I also hate it when people tell you to be positive, about not to be anxious, etc. Even my doctor told me not to be anxious. Maybe if I become inhuman I could reduce my anxiety. It is okay to be anxious, but get all your information in order, organize your mind, remember that we all have to leave the world one day, no matter what we do, and just rest after that. Write it out if you have to, what your plans are, what you are going to do, which is treat your body with the best knowledge you have, what God is making available to you, and then, relax and see what the outcomes are.
I am sorry, this is not meant to be an advice, I guess I am talking to myself really as this helps me. This is what I tell myself, so I am basically sharing this with you. Good Luck!
MBJ - I am getting really worried about you, where are you, my friend? I am greatly missing you. Are you okay? Someone explained Addison's disease here in one of their posts and it does make sense. Having low temperature could be because of low adrenal hormone functions. Oh dear, I truly hope you are doing okay. Please write when you get a moment. Sending you lots of healing love your way today.
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Lovelyface - beautiful words of advice and comfort.
Stupidboob - all I can add is that I did weekly Taxol, and it was very doable. I had very few problems. Rest assured that the nurses will watch you VERY closely on your first day, and if there is any trouble, they will jump on it immediately. And your doctor can always move you to weekly if need be.
MBJ - echoing Lovelyface - I hope you are okay. Please let us know!
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Stupidboob: Everyone is giving you good advice regarding the Taxol. By the way, it's not the doctor you would have to fight with in order to get it - it's the insurance company. It is very expensive and insurance companies ordinarily will not pay for it unless you are allergic to both taxol and taxotere.
Wishing you the best
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In the grand scheme of things I guess this is really all we can do
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Wow Kymn, this is so beautiful. I had never seen this one before. Thanks so much, I am gonna print it out and hang it in my cubicle at work.
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Thanks, Kymm. That was a good one.
Navy
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Kymn this is IT! A summary of what we can do! Love this, so aptly put.
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Thanks Kymn!
Don't worry about being positive..there are studies out there that say it doesn't help physically.
Bottom line is..you gotta do what you gotta do..everyone is different...people told me how positive I was and I really just wanted to slap them......for me..working and trying to maintain the "old" lifestyle was wanted I needed...I think.
I never did have that scream at the top of lungs, crying episode...maybe I should have...maybe someday it will all break loose.
Oh..and the hair..2 inches really is pretty good for 7 months PFC...2 inches is really pretty long..at least you can do something with it..spike it.....straight iron it...gel it up...
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With all the excitement around here and with my kids I totally forgot I had an onc appt. next week! Usually I'm freaking out about a month or two before!...I was going to ask for a Vit D test and I totally forgot to do that also.
My son doesn't have a brace..worse case scenario he may have to have his finger glued to his stomach..(like Napoleon)..I hope that doesn't happen...what a PIA if that does happen.. poor kid..
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Stupidboob..taxol...it's not that bad..you can do it...the scary thing for me was that I knew what AC se's were..and going on to something different was freaky.....different se's..but you may not have any at all...once you have that first one done you will probably be ok...
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Titan, what's the purpose of gluing your sons finger to his stomach? That sounds awful for him. Hopefully if it needs to be done it won't be for long.
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I thought if I could try and put it out of my head and move on it could stay in the past. But the sneaky, sly, evil, lurking F. C. is back with a vengeance and it really sucks. I enjoyed having my port out for the last two months and I celebrated that it was all behind me. Ha! I think this is worse than when I was first diagnosed. I did all that I was told all the chemos, rads surgery and yesterday I was to finally meet with my plastic surgeon to talk about getting my new boob instead I find out its baaaack! This really really sucks. I missed all of you but I thought I had moved on and didn't want the constant reminder. Fool is me.
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Laurajane I am so sorry to hear this....................comfort hugs.
When I read stories like this it makes me wonder if it is even worth trying................
How many of you have had yours return? How long after chemo, surgery, radiation?
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Laurajane just curious did you do lumpectomy or mastectomy?
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Oh dear Laurajane, I am so very sorry to hear that the F.C. is back. Is it a new primary in the same breast or where is it? What scan has revealed its presence again? I really have nothing to say except I just want to hug you so badly. Sending you my love and praying that you get all the strength that there is to face this devil once more. Fight it, my friend, keep on fighting with all the strength that you have.
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Laurajane: I am just as devasted as you are!!! Please request a full body scan. Do you have a tx plan yet? What were your tumor markers? How did you know? That's the scary part you don't know even if it is happening. How can you be proactive if you don't know what to watch.
Stupidboob: don't go there. this awful disease doesn't have rules, but most of us do recover with relapses and all. you will be fine.
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Laurajane - I was thinking about you yesterday, I wanted to email but I decided that in your shoes, I would want to be moving on. I am so very sorry to hear about your recurrence, I'm in tears
. Please stay with us so we can hopefully offer even a small amount of support and comfort. Thinking of you.Stupidboob - please know it is worth the fight. Statistically, you really do have a good chance of beating this. In the end, I want to be able to say I did EVERYTHING I could to fight, win or lose.
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Laurajane: Oh that just sucks!! I've missed your posts, but this is not the way we want to stay in touch. Is it another primary, local or distant recurrence? Really hoping you can get a treatment plan together soon and fight this with the incredible spirit you showed before. Still, this disease is really f...ing unfair. ((((((hugs)))))
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Thanks Fighter and Suze...............you know just being new to all of this I want to learn, then I go on overload.......then I back off and start again and it is just all so overwhelming. Being that my only experience with cancer is loved one lost.........with a few that have beat it, but those people are SO UPBEAT it is sickening...........I just don't have that upbeat attitude and I know it does not help.
By the way been meaning to ask what things food wise your doctors have told you to stay away from?
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Stupidboob - the "be positive" attitude that others like to suggest to you sucks and does nothing to help you. There is no good in faking a positive attitude. However, I believe there is a difference between that and being hopeful. I get down and in a funk, but that doesn't take away my true hope. They are different. Does that make sense? I read somewhere (can't remember, chemo brain) that studies have shown a "positive attitude" makes no difference, but "hope" does. So its okay to be down, and feeling lost. You can do all that, and still have hope.
My doctor is BIG on diet and exercise. She bugs me about exercise everytime I see her. She encourages me to do the WINS diet - very low fat (under 20%), and to limit bad carbs, dairy, and meat protein. I make sure to eat 4 oz of blueberries almost every day, and drink 2-3 cups of good quality green tea each day. She also said red wine in moderation (3 glasses/week) is okay, alcohol and TNs don't seem to have nearly the connection as ER+ cancers. Supplement wise, I take Vitamin D3 at 5000/day with resveratrol, tumeric, and mushroom capsules.
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Hey guys.. just popping in to say "HI". Hope you all are surviving the summer heat. It's been HOT here in Ohio.. consistently hot for several days in a row and I don't recall a summer this hot in my lifetime.
I've been extremely busy, but you all are always in my thoughts and prayers. It's difficult at best to go a day without thinking about cancer, especially when you're BRCA+. My onc isn't happy with me. I have acreage and have to mow it and it's been hot/sunny. Even using SPF 40, I still have a nice tan. Onc told me I need to wear LONG SLEEVES when I'm outside because of increased risk of melanoma with BRCA! Ok, so I'm having hot flashes from ooph and you want me to do what?? I cannot do that. Meanwhile, my daughter went to The James in Columbus because she's BRCA+ and 20 yrs old. She told me "Mom, they told me I need to have my ovaries out as soon as I make the decision, and asked me if I had decided when I wanted to have mastectomies!" I guess they really push for decisions with BRCA people, but she is ONLY 20 and hasn't had kids yet. She wants kids, but doesn't even have a boyfriend yet. Talk about pressure! They refused her an MRI (which I still will push hard for) until she's 25. They still don't seem to understand that with BRCA, EARLY detection means you have to start vigorous testing extremely EARLY. I see so many young women here in their early 20's facing breast cancer. So, ok, AFTER you have been dx with breast cancer and are BRCA, they do tons of follow up and want you to wear long sleeves when in the sun, and BEFORE you're dx with it (at age 20), they want you to consider mx and ooph but they won't do an MRI before you're 25 and no mention of sunblock?? Isn't that a bit contradictory? Anyway, enough venting... I'm just aggravated today and you guys are the ONLY ones who understand.
I have a completely unrelated question. Is there anyone here who lives in the St. Louis area? I posted a thread elsewhere, but long story short, I found a dvd recorder that I wanted to see about getting (craigslist) but I'm in Ohio. I don't even know if it's still available, but figured I'd ask and if I found somebody then I could find out.
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