Calling all TNs
Comments
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Csmommy - yes I am still there too so know how you feel but you will do just fine. Just post and someone will be there to help you. Thinking of you. Annie
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Catwhisperer-I can't find the link for the herceptin study, I think they are just starting it, but here is a link to a vaccine study that seems very interesting for those with low her 2 expression. I don't qualify for it because of my stage and I had breast cancer before. this link is to the Seattle trial, I don't know where else they have it, but I am sure it is in other locations as well. I hope somebody here gets in this study, I think it is a good one! http://www.swedish.org/Classes-and-Resources/Research-Studies/CTU-CRC-11105--Galena?TypeOfStudyName=none%3anone&Title=&Investigator=#axzz1t7yIh8Qd0
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I think this must be it, but my doc was way off on it! It is for those who have not done chemo., so it is for newly diagnosed. http://www.swedish.org/Classes-and-Resources/Research-Studies/NSABP-B-47--A-Randomized-Phase-III-Trial-of-Adjuva?TypeOfStudyName=none%3anone&Title=&Investigator=#axzz1t7yIh8Qd0
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Hi to everyone, I don't post often but i do read.
Luah, I have pains and stiffness in my hips. They think it's osteoarthritus (sp) so please go and get it checked out.
thinking of you all.
bernie
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Hi to everyone, I don't post often but i do read.
Luah, I have pains and stiffness in my hips. They think it's osteoarthritus (sp) so please go and get it checked out.
thinking of you all.
bernie
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Thanks, everyone, for the birthday wishes. Tomorrow will be a great day - I'll take my mom out to celebrate. She has Alzheimer's and won't really know that it's my birthday, but that's OK. And Saturday night the whole family is meeting at a Japanese steakhouse, so it will be fun and the grandkids will get a kick out of it.
Someone mentioned this a couple pages back and I want to reiterate...when you go for radiation planning, be sure that you are in a comfortable position when you are being set up. Don't let them put you into a position that will cause pain with every treatment. I have pretty good range of motion, so I didn't worry about how they positioned me. But a slight adjustment would have made every treatment a bit more comfortable. So when they ask you if you are comfortable, don't just "suck it up." They can probably make some minor adjustments that will not interfere with your treatment. Also, I hated the huge hospital gowns that my center provided. So I made my own radiation gown by cutting a t-shirt down the middle of the back and attaching two sets of ribbons for tying. Everyone thought the idea was genius
I've had osteoarthritis in my knees for years and I take meloxicam for it. Those of you suffering may want to ask your doctor... it's one of the $4 prescription drugs at WalMart and it works extremely well, much better and cheaper than Advil or Aleve.
The best thing that will happen today is that I am going to my granddaughter's preschool with my daughter to be the parent "helper" today. These 4 and 5 year-olds are so darn cute!
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CSmommy, Naan's right, we've all been right where you are and we're all right here for you now. For me, that was the absolute worst period in this whole mess so far. Once we got a plan in place and I started chemo, everything just seemed a bit better. You'll get thru this and move onto the next step. Just take it one day at a time, post as often as you need too and soon you'll be on the other side of treatment.
Beccad, completely understand wanting to get back to work. For me, work meant "normal" and that's what I crave most.
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Hi everybody - have been away & am now catching up on my reading...
Cat W - as someone else said, the radiation tatoos are barely noticeable...mine looks like a very tiny dark blue freckle.
Katyrnn - The crone shuffle...I love it
I was never diagnosed with sciatica before, but have had minor back problems on and off before BC....nothing that a couple of Advil couldn't handle. I think it's probably age related (I'm 58). Also I've defnitely had more aches and pains all over the place since chemo. Oddly (or not), my hip hasn't been bothering me much since I saw my MO and she said my symptoms "sounded nothing like cancer." Go figure...Luah - it's just what you described ....stiffness in my hip after I've been sitting a long time. It goes away for months, then flares up for a few weeks, then goes away.
CSmommy - I understand your fear, I'm sure we all do....it takes a while to wrap your mind around this diagnosis. As others have said, I found it calming to have a treatment plan in place. Just take this thing one day at a time and you will do fine. You might want to ask your doc for an anti-anxiety med....I found it to be a huge help, especially in the early days....
Hope everyone has a great day!
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Sugar: A very Happy Birthday! And many, many, many more!! (hope you and your daughter can avoid the student ruckus in Montreal; it's my home town and I hate seeing the recent photos.)
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Good morning everyone! I have a question about skin care. I finished my 12 taxol treatments a few weeks ago and I'm now on 4 DD A/C. I have been using aquaphor for my skin but my skin is still flaking off. Any ideas of something else that works.
Thanks
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Good Morning Ladies,
I had a few pages to catch up on. What a wonderfully chatty group we are. I love it! Thanks to Titan for starting it.
Happy Happy to Luvrving and Sugar77.
Thanks to everyone for the offer to supply some good "ass kicking" footwear. I may take you up on it when mine wear out. Lory48....size 12, now those are some shit kickers! Mitymuffin....steel toe boots sound like a great idea!
McCrimmon, Luvrving.....my doc said no on metformin. my sugar levels are fine so no need. I will talk to him about it again on Friday.
Lovelyface....I love babyheart. My husband calls me slimsugar. I always know I'm in trouble when he calls me Dawn.
Christina1961.....what was your primary chemo?
Miffyjones.....I am so glad to hear you took the information from this and the other boards to challenge your doc to get what you want. Here's to a dance with NED for you!
Cockerspaniel...Good job! Taxol was a breeze for me. A little neuropathy and nail loss, but otherwise very manageable. You can do it, you can do anything!
TiffanyF4, Titan....I find the mental struggle to be much harder than the physical. Some days are worse, some better. It's like we are being stalked. I just want a restraining order please!
Beccad.....hoping Gemzar does the trick. I had it and did pretty well. I hope it is for you too! You walk that lap. You deserve it!
McCrimmon....has the move stuff settled down w/hubby? I find my husband shows stress over this in the most peculiar ways. I try to cut him some slack, but sometimes all I really want to do is yell, "this is about me, not you"! Ok, it is about him too, but really, don't add to my stress please.
Luah....thanks for the points on the TN myths. It is good to be reminded.
Phgraham......most of my tulips are up. I still have a few more that are just starting to bloom. I have taken pics and will post them as soon as my husband shows me how to get them off my phone.
BernieEllen....oh boy they are cute! Can I come over for a nap?
Paintingmywaythru....How did the opening go? Your work is so wonderful, I can imagine it was a great success.
Heidi.....how did that shot work for your neck? Ugh, 6 hours to measure your pain level. Geez! You are a strong, strong woman! I hope it did the trick.
Tifj.....so very sorry to hear about your cousin-in-law. I know you will be a great help and comfort to her. Cancer sucks!
Mags.....have a great vacation. Looking forward to hearing all about it.
Welcome to all the newbies....wishn4one, clowngirl, csmommy.....you have made it to one of the best resource and support groups around. I look forward to getting to know and support you through this new journey.
Have a wonderful day! Love to you all!
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I know the last post was long, but I didn't want to miss anyone and also want to update you on how my post-surgery, start of chemo is going.
I have healed up pretty well. Another giant scar to add to my quiver. It actually looks better than I imagined, so no complaints here. Really all I wanted to do was stretch and sleep on my stomach. After a frustrating two weeks I am now able to do anything I put my mind to. Of course keeping the mind focused is still an issue. Hehehe
The Erubilin (Haleven) really whacks me out. I am manic for 3 days (the steroids help with that) and then just sort of level out. No crashing like the other ones, just a little fatigue and then somewhat regular energy levels. I hope it stays that way as I continue. I did have quite a bit of nausea, but was able to "keep it in check". Oh and it makes you dizzy and makes your heartbeat skippy. It is really not all that bad, yet.
The steroid mania came in handy for me over the nice long weekend. I was able to do yard work all day on Sunday. Of course, it took all day because I am not as fast as I normally would be, but hey, the yard looks great! My poor husband kept checking on me. I was like some deranged bee flitting around the yard looking for a place to land. It was a bit comical. I'm sure my neighbors think I'm crazy as I was sweeping my sidewalks after dark. If they only knew how crazy I really am!
The visit with my sister was awesome. I miss her the second she leaves. I am so lucky to have my best friend be my sister. This week is always hard on our family as we lost our dad (step-father) very tragically 14 years ago today. Along with my 2 year cancerversary on Monday it has become a very reflective time. On top of all that my step-sister was killed in 1985 and the man who did it is asking for clemency. It was front page news here. I guess I find it incredibly offensive for him to ask for a second chance when she does not have that opportunity. In fact I want a second chance at a healthy, cancer free life, but I do not get that luxury. Yes, people can change, but that does not mean they are absolved from their actions. It just puts life into a perspective I had not really thought of.
With all the stress on my family (and friends) I find myself feeling quilty that my cancer adds to what is already a full plate. I know I cannot control my journey, but it just hurts to know that they have to deal with mine as well. I try to give them as much support as I can. It just seems that I fall short sometimes. This is something I continue to work on every day.
Thanks for letting me vent! Tomorrow is #2. Wish me luck! Love to you all!
p.s. to add insult to injury, yesterday my cat scratched my eyeball. not fun at all! woke up this morning to an angry slightly swollen eye. can't wait to call the doc and tell him. i sure will look fun at chemo with an eyepatch! Argggggggggggg!
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Thanks everyone for the tips on radiation and tatoos. I'll have a ton of questions when I get to meet the RO. I still have to get through the next, and last taxol, next Monday. My neuropathy is pretty bad still so am scared what the last one is going to do.
Bak - thanks for the links. I really would like to find a clinical study to do to prevent recurrence. I think most of them say you have to be done with treatment and I won't be done until somewhere around the end of June but keep us/me posted if anyone sees any new ones that I can check out. It would have to be available in the Atlanta, GA, or Birmingham, AL, area (those are within 1-2 hours of me).
inmate - glad the new drug isn't too hard on you. I know the guilty feeling of the stress it puts on others, but you really have to put yourself first and foremost right now. I am sure they all understand. Hope your eyeball heals. I have been scratched in a lot of places, but not an eyeball! Was the kitty trying to catch it? lol
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Inmate so glad you are feeling good and getting to work out in your yard. I cannot wait to see those pics. Glad the chemo isn't too hard on you! I sure hope it is kicking ass!
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Inmate - I had been offered the Metformin clinical trial. My blood sugar is perfectly normal. I went to my doctor and showed him the clinical trial. Explained to him that all we were debating was whether I went in the trial and got a 50% chance of getting the drug, or whether I got it from him and got a 100% chance. He had no problem giving me a 100% chance. He just told me to keep up with the studies, so if they found it ineffective, we'd know to stop the drug.
Lisadi1963 - I do have a suggestion for you. When I was in chemo, when skin was dry like a
Croccodile. My friend brought me this soap that happens to be manufactured locally. I was very grateful, but my thought was "yeah, right, like a soap is going to help, lol. Well, I have tell you, I'm a believer!!! I am so hooked on this soap that I have turned all my friends onto it. In fact I'm thinking of setting up a web site to sell it! One my friends says she doesn't even need to use moisturizer now. (Crocodile lady here still lathers on the skim cream, lol)
It comes under different brand names, but the wrapper on the back says "CST Manufacturing, Fall River, MA. The only stores I know that sell it are Marshall's, TJ Maxx, and Home Goods. If you don't have any of those stores in your area, let me know and I'll send you a bar. The scents you can get depend on what they've received lately. Tell me if you like a fruit or floral scent. ( so far I've seen: pi apple-coconut, pineapple mango, vanila tangerine, honey almond. Rose, jasmine,)
Seriously, if you can't get it, let me know, and I'll send it to you. The told me to use I scented Dove during radiation. I used this instead. A month after radiation, you couldn't tell which breast was treated. ( also when I have more time, I want to discuss the use of lidocaine sprays during radiation)0 -
Inmate, so glad you are doing okay. I know what you mean about sisters - they can be a soul-mate through all this S*&T. (I tried to be one to my sister when she was Dx'ed, and then she returned the favor).
Also, how kind and thoughtful, with all that you're going through, to offer a personal comment to everyone in that long post. And listen up, lady: Never apologize for your posts - long or otherwise - we love reading them!
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Lisadi1063---Before I even was diagnosed I had really dry skin and my dermatologist recommended the Aveeno Baby Bath soap (liquid form) and the Aveeno Baby exema lotion. Both of these products have really helped. My radiologist was in agreement about the Aveeno lotions during therapy but he also gave me a steroid cream to put on each day and I had no burning or sores.Hope this helps.
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Inmate - maybe this will help convince your MO:
http://www.clinicaltrials.gov/ct2/show/NCT01310231?term=metformin+and+breast+cancer&rank=4
I hope the chemo is killing every last cancer cell while being gentle on you.
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Are there any preliminary reports from this study - nothing has been posted from what I can see. I think there may have been earlier studies though? Results? I know my onc won't go there until something shows something favorable....
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Inmate - so good to hear from you and to know you are doing well on chemo. Great that you are back. I can't wait to see your pics on the tulips but could just imagine this deranged lady flitting amongst the tulips after dark with your neighbours looking on. (they are coming to take me away ha ha). Good that you caught up with your awesome sister but sorry to hear about your sister-in-law. I don't know if people that kill, even once, can change. You would have to be mad in the head to do it in the first place but to ask for clemency, no way. Like you said she hasn't got her life why should he have his. In my opinion people that kill should rot in hell for the rest of their days. Life for a life in my book. I'm sure your family will not think of their full plate when it comes to your illness and will walk along side of you every step of the way just as you would for them. Hope everything continues to go well with your chemo. You say you have another scar, this means nothing but life. My hubby has lots of scars on his body and I love every one of them because to me its means he is still here with me as aggravating as he is at times!!.
LuvRVing - Its sad that your mum won't know its your birthday because of Alzheimer's. That's one thing I have always been afraid to get because I would hate to lose all my memories of my family. Have a great time at the Japanese Steakhouse. Will remember your tips on radiation when my turn comes around.
Have a good day ladies and enjoy being alive even if we don't feel it at times. Annie
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http://www.ncbi.nlm.nih.gov/pubmed/19487376
A further explanation of the link above:
http://www.breastcancer.org/treatment/chemotherapy/new_research/20080606b.jsp
And then there's all this:
http://clincancerres.aacrjournals.org/content/17/12/3993.full
http://cancerres.aacrjournals.org/content/69/19/7507.long
http://www.prweb.com/releases/metformin/cancer/prweb2880464.htm
http://www.biomedsearch.com/nih/Metformin-amplifies-chemotherapy-induced-ampk/21543517.html
Nothing specific to the ongoing clinical study, but plenty of other research results. And for what it's worth, while I did have a BMX, I had several involved intramammary nodes. After chemo + metformin, I had a complete pathological response.
Here's a clinical trial at Tufts that someone may find interesting:
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Lisadi1963- I've been using an organic goats milk soap that I bought from a seller on etsy.com - PM me if you're interested and I can look up the link. I also use Nivea body oil on my feet.They are peeling horribly from the Taxol.
Inmate - I second what Cocker_Spaniel said - Life for a life in my book, too. Clemency? Seriously? Not! My parents gave me tulips for Easter and I thought of you. I only got about 8 in my pot, not the 250 you have! Oh, I wish!! They are my favorite flower!
Good thing today: I had my LAST TAXOL this morning!! I got hugs from the nurses and a baseball hat with the Oncology Centers name embroidered on it. Took an hour nap during the infusin and a 3 hour nap after I came home - that Benadryl hits me hard. Now I'm watching Drake & Josh with my 11 year old and watching him dance and look at his reflection in the window - he switched to SpongeBob on a commercial. It was hysterical. I love his laughter!!
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CharB22 - big congrats on finishing your chemo!!!
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Lisadi1963: I used Arbonne 24 hour moisturizer as well as their Gelee. It's from their detox lne and works wonders. Paraben free, all natural and pure. I LOVED my products so much that I now sell them so let me know if you're interested. They have a whole line of health and wellness. The protein powder saved me during chemo.
CharB22: CONGRATS on finishing. Enjoy not having to ever go back there again. A son's laugher is the best medicine xo
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Congrats CharB22!!!!
Inmate, good to hear from you. Hope your kicking the sh*t out of that cancer! And glad to hear you had a great time with your sister.
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csmommy.oh yeah...we have all been scared...chemo is scary..it's just one of those thing you have to do to get better...for me it wasn't so much of the physical as much as the mental stress...it was like cancer 24/7 on the brain.and there was no way to escape it....but I know you have heard this before but once you are done with treatment..and even during treatment...there really are moments when you DON"T think about it....hanging out here and sometimes talking about other things helps so..
Tracie..I hear ya with the chemo brain....I think people get used to us being a little out there sometimes....at least we have an excuse...and I plan on using it for a long time
The Browns get Trent Richardson in the NFL draft...better watch out Heidi lol oh at Pats fan too...
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Happy Birthday Luv and Sugar- may you have many, many more!!
Inmate- thank you inmate. I hope #2 is kind to you!! Maybe during your next steroid induced mania you can come help me do spring cleaning!! HA!!
I would love to reply to you all, but need to get some sleep-tomorrow will be a long day. My daughter(6) and I will be going on our first Girl Scout campout and it is supposed to rain most of the day tomorrow!! I am like a cat- I don't like getting wet!! Well, I do take showers though! I don't like being stinky!!
Good night all you beautiful women!!
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Thanks, Tif! Have fun at that campout! There's nothing more fun than camping in the rain
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I just want to join in for a moment and say Hi to all you wonderful ladies. I have lots to say to each of you as I quickly glanced through the posts, but I do have to go back and really read all of them in order to catch up and yes, everyone has been chatting lots, which is great. But I did see one special post that I had been waiting for - from our babyheart Inmate. What wonderful posts - so goooood to hear from you, girl. Being crazy is being normal, and we all know that we are all crazy, after being on this journey, why would we want to be anything else?
Today, I went to see an endocronologist, have been feeling extremely lethargic, as well as for the neck pain which remains undiagnosed. All my blood tests were almost perfect though. Anyway, I want to tell you about this doctor, I think he is the best doctor in the world, what a wonderful wonderful doctor. I have never in my life had a doctor sit with me, and look through 5 to 6 years of bloodwork. He asked me a ton of questions and really tried to pinpoint where my problem was coming from. He couldn't figure out. He gave me an ultrasound of my thyroid, although he said physical exam and bloodwork does not show that I have any problems with my thyroid. he also gave me a few blood tests. If anyone ever wants a great endocronologist, Dr. Zlock is the best doctor in the world, I swear. May God bless him a millionfold. If only all doctors were like thim. Actually, I have met quite a few doctors lately who are just so wonderful. Dr. Tangco, neurologist, Dr. Friedman, gastrointernist.
I personally think that I have really low estrogen levels....... that's it. When I eat flaxseeds, I sure get a boost of energy, as I can tell from the pimples, but I also get painful lumps on my breasts, very very scary. So I stopped eating flaxseeds. As for soy, I will never touch that. Not sure how else I can up my estrogen levels in order to keep up with a somewhat functioning body. I am so tired and lethargic. Oh by the way, my tumor markers were great, all 3 of them, remember last time, one of them was higher within the normal range. Something that I have learned through my Onc. - if you have a breast biopsy, your tumor markers will be high - how interesting, isn't it? So remember this, there is no need to panic.
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Lovelyface - no, no need to panic. You just hang on to your wonderful Dr Zlock. Blood tests should show if your estrogen is low or perhaps you could be low in iron. Do you eat lots of green leafy vegetables? Better keep off the flax seeds then as you don't want any more breast lumps. Hopefully your blood tests just show something simple. Interesting about the tumour markers and high levels. Good news that your tumour markers were great. Thinking of you and hoping all ok. Big hugs. Annie
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