Calling all TNs
Comments
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Ladies better than a like button would be a comment slot after each post.
Inmate I woke up with lots of what if's this morning again, but not for me today. I will ignore that voice if it kills me. Good luck with the trial. Yours and LUV's bravery could be our life savers in the future. . Big hugs to you both.
In regards to the garage sale my old fellars 'treasures' could go with your treasures. He is the biggest hoarder and me and your hubby could sit on the fence and watch you sell all of the 'junk'. What is this talk of 'when you are gone". You just aint going anywhere girl. Who will run the garage sale with the old fellar lol.
Jsan69 - I too am trying to make a decision about removal of the other breast. My BRAC test came back inconclusive but I really would like it to go now as I feel awful going out at the moment. I can't wear my bra which is uncomfortable anyway because of the soreness from rads. I think I would rather be flat than have one breast just hanging there all on its own. I missed out on your cobbler so can I have some key lime pie, yummy and a piece of home made bread with heaps of butter.
LUV what is your trial drug called.
Well ladies I have cleaned each room of the whole house now and whobetide that old fellar if he mucks it up. I even did the windows so I am again nice and clean.
My hair is at last starting to come back thank goodness so hopefully I can go out without a hat soon.
My heartfelt good wishes to Inmate and LUV with the trials. You ladies are just so special to me and I can't thank you both enough for putting yourselves through all of this which in turn could benefit all of us TN's. Big, big, hugs to you both and everybody else on here. Annie.
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belleast - had my last neo-adjuvent chemo yest and met with doc for usual checkup while in day ward. Showed him the swelling and he said "that's not a lump", I said "I know but it's slightly swollen" and he assured me that it's nothing serious and is a fibrous tissue rather than a lymph node/gland issue. In typical 'me' fashion, I woke today and it seems to be gone, I wonder sometimes does the mind and it's worries make things worse and once you just relax a bit these symptoms go aswell? I will be meeting my onc & surgeon in coming week so will get their opinion on it aswell but for now I am not going to let it worry me, have enough worries to be dealing with
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HI Belle...I agree with Bak that it could be lymphedema. Fluid can collect at the elbow area pretty quickly and easily. I am now bilateral LE and it sucks but I am coping well. I only had 1 node taken on the right side and did not get rads on that side so my therapist thought I would be really low risk...ah well...proved em wrong again. Have you had any cording in the arm? For me severe cording was a pre cursor to the blow up in both arms.
Inmate and LUV--KICK IT'S ASS!
Maggie
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Annie - the drug is called ARQ 197 which is code name for tivantinib. It has been tested extensively in other cancers (colon, lung) and Phase III trials are beginning for treating those cancers. Mine is a Phase II trial. It is called a c-Met inhibitor, a new class of chemo drugs. You can read a bit more here, but it's quite technical. It will give you a bit of an idea, though.
http://en.wikipedia.org/wiki/C-Met_inhibitors
Inmate - abraxane is like Taxol and Taxotere so you'll find lots of information on it, if you haven't already. It can cause some neuropathy, so talk to your doctor about taking Vitamin B6, acetyl-L-carnitine and L Glutamine while on it. My Dana Farber oncologist had no problem with my taking this while I did Taxol and I avoided neuropathy. There is a clinical trial underway to determine if this works (other than anecdotal evidence)
http://www.clinicaltrials.gov/ct2/show/NCT00775645?term=breast+cancer+neuropathy&rank=1
Also, I know it sounds crazy, but I took a pre-natal vitamin while doing Taxol and for a few months afterwards. Again, my DF oncologist was OK with it. There is an extra dose of iron and folic acid in the pre-natal that helps with anemia and fatigue. It's a cheap solution that made a big difference to me. And Pepcid for heartburn. I received an infusion of Pepcid before I got the Taxol drip, Pepcid works on the specific proton-pumper that causes acid reflux from a Taxane. I know...more pills. But if they keep you more comfortable, it's worth it. And remember, it's not forever. I remember thinking I was a walking chemical waste dump during chemo. But I functioned pretty well, all things considered, and I kept reminding myself (as did my best friend - a nursing instructor) that it was temporary.
And thanks everyone for the well-wishes. The first dose went down this morning with my breakfast. All is good.
Hugs to everyone!
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I have set up a private site on FB, please pm me if you would like to be included.
Totally private only we will be able to read and post .
xxxx
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bak,maggie,mumtobe-no cording,it's the opposite arm from the side of bc. It feels hard/firm,does le feel hard? Thanks for the suggestion,i'll ask the mo when i see her. It's just frustrating not knowing,my mind keeps taking me to that place -It's spread to the bone,this is a symptom of it,i've had it for months! I know it probably isn't but I'll be pretty p*ssed off if it is and no one caught it! LOL Hope everyone here has a great day.
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Dawn - One person's treasure (yours) is another person's junk (DH). I'm sure your collection will be treasured by some lucky buyers. Hope selling your treasures isn't too painful. So much for resting!
Annie - Yes, hurry on over. I'll save a slice for you. Glad you understand my breast elimination project. One breast is just a useless bit of floppy fat. Just wish BS had told me that this could have been done at same time as BC breast. Happy your hair is coming back. Hair is good.
Now I'm off to make that pie and try making a loaf of English Muffin Toasting Bread.
Joy to each of you Jan
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Cocker and Inmate- I am not a collector, but when we do have a garage sale I banish my husband to the house otherwise he just practically gives everything away! He says he just wants to get rid of it. He sold a dishwasher we pulled out of our new house and used once for $20! It was worth about $200-even at garage sale prices!
Hope- Thank you! Wishing you a peaceful, stress free weekend.
Bernie- I am sending you a PM.
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Luv - thanks so much for being our pioneer woman! We love you for doing this. When do you think they will conclude with an answer?
Inmate - I am so excited for you that you have started the new drug. Are you still going to do Abraxane, plus this or just the new one? This could be the one which will kill those suckers once and for all!
Wishing everyone a lovely labor day, enjoy your long weekends, the wearther here in California in my city is beautiful today. Love you all.
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Luv + Inmate - I hope the trials are just the ticket! Thanks for taking one for the team. My aunt was in the first taxol trials.
Jan - I had both removed at once. I love being a flattop.
Annie - Woo Hoo - on the hair! It helps you feel " well".
Belle - welcome!
Bernie - great idea - I'll PM you.
12 year old son, has 2 friends over for the night. They each have a laptop and are playing a game together. New world.
I see BS for 6 month check-up Tuesday. That should take 5 minutes. I hope!!!!!0 -
Karen - "flat top" I love it! Jan
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Hi all, I'm going to hv to gt used 2 the acronyms!
Belleeast--Would your doc let you have a bone scan, for peace of mind?
BernieEllen--I would like to be part of FB, but I dunno what pm is?
Inmate & Cocker--I just down-sized recently too, and had my daughters (19 & 22) do the same. I, too, was thinking that it would make it easier for my family, whenever I'm gone. Now, I have some regrets about getting rid of some sentimental things that might have been fun for my kids to have. Oh well!
For all you ladies on clinical trials, I toast you every day. I know all this will help my daughters, my twin sister, my cousins, and generations of women to come.
Karen--Cheers to you for your decision to go flat! I know of someone who did the same and had a gorgeous tattoo placed on her chest. I am debating nipples. Not sure I want them and have to make a decision soon.
As for lymphedema, I've had quite a bit of trouble with it, particularly when I eat salty foods. And, I had major cord issues, with six very prominent cords that kept me from straightening my arm for a while. A physical thx helped me, although it was very painful to have them "popped". I have full range of motion now and no visible cords. Do any of you have tips for preventing lymphedema? I have twinges of pain down my arm often.
Hugs to you all!0 -
Yodie, I have recently experienced joint pain in my hands feet and knees. I can relate to the feeling old espicially when I kneel down. When I wake up in the morning it hurts to bend my fingers or move my hands. If I move slowly it goes away, but not completely. I still feel it during the day. My feet if i sit still or cross legged for a period of time. Trying to ignore it, I am 9 months post chemo. This has only been within the last month,k was fine right after. I don't take anything, never was much for pills. I am only 47. Please let me know if you hear anything.
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InspiredbyDolce (Debra) - this picture is for you!
I was PM'ing with Debra and she said I should post a picture of my daughter's and my pedicure, so here it is! My feet are the dark ones - I have a great Xeloda tan and she has the skin tones of a redhead.
Yodie - there is a very informative forum on Lymphedema and several very knowledgeable ladies who can answer your questions. You might want to check it out.
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Yodie- PM means private message. Just click on the members name and it takes you to their page, then click on - send member a private message.
Lynn- I am 20 months PFC (post final chemo) and I still have the "old lady" issues. I will be 47 in Oct. It is better than right after chemo, but I still don't feel like I did pre-chemo. I have never really had any significant neuropathy, but the palms of my hands burn when I wash dishes using a srubby sponge in warm water. Weird!!
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Luv - great piggies!
On the old lady joints - I jump down from my SUV, as if I still can. I've almost fallen on my face a few times :O.
Lynn - I have three numb toes from 2004 and hand issues 16 months out, this go around. I wish I had taken all the drug precautions Luv did!0 -
Luv - Love those toes! Mom and Daughter no less. Isn't great when moms and daughters like to do things together. It made we think about when my daughters went to the same high school I taught at. Two of the three didn't want to be seen with me. Third one came to see me for money. They all turned out to be fine productive citizens, but there were years....... Jan
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yodie...to prevent Le there are several things to "avoid" Check out the LE section on this website for more but here are the ones I can think of off the top of my head
*no hot baths or showers-extremes either way in body temp can cause a flair*
*do not carry a purse on that side or on you shoulder
*do not lift more than 10lbs above your head with affected limb
*careful of any cuts, scrapes, nicks, bug bites etc in the affected limb
there is so much more I know these are just the basics I can remember. there are some great threads about LE here too
Maggie
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Quick (and personal) question ladies......I have had SO many yeast infections since finishing chemo. Anyone else?! Could it be from the metformin? Cells just going back to "normal"? Thoughts?!
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Borntosurvive - have you had your blood sugar checked? High glucose levels are notorious for causing yeast infections. I've been on metformin for 10 years and never had one. But that doesn't mean it is impossible. Has your doctor cultured the infections to try and determine what's causing them?
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Hi everyone. I don't post a lot but I am a stalker! Love to read everyone else's stories. I'm just over 4 month pfc and I still have some neuropathy in my hands and feet. Does anyone no if there is a vitamin or something I can do to help get rid of this. I will tell you that is a lot better than it was when I was doing chemo.
Thanks and I hope everyone has a great long weekend.
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Lisa--Hi I am a stalker too. My chemotherapy ended 13th June and 25 rounds plus 5 boosts was over last Monday. I started having neuropathy in hands and fingers joint pain a month post finishing chemo. I keep exercising..walking/soft jogging 60 mins evening. I feel a lot better about neuropathy now but joint pain in my fingers are still on and off..
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BornTS: I have been on Metformin since May and have not had any issues with yeast infections. Agree with Luv, to get into your gyne for proper dx since other infections can mimmick yeast symptoms.
As for the creaky old lady joints.....Trying to stay active(easier said than done) seems to help and the further PFC you get the better. I know it took at least 12 to 18 months to feel closer to "normal" Although it is a new normal because aftet all tx your body is just not the same. And for better or worse neither is your mind and spirit. All things need time to heal and recover.
For neuropathy sufferers and LE, There will be others to come along with advise to help you. Lots of info here with smart caring women.
Have a nice Sunday all.....Going to Toby Keith concert tonight. Hope the rain stops for awhile.
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I still have numb toes and it is annoying to say the least! It doesn't really hurt, just a weird feeling and hard to wear heels. I am taking B complex and glucotime but not sure it is really helping. My fingers were numb, but that seems to be improving with time, hoping the same for my toes! I am 2 months PFC.
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Those of you with neuropathy might try Vit B6, L-Glutamine and Acetyl L-Carninitine. Here's a link to a clinical trial related to neuropathy during chemo treatment:
http://clinicaltrials.gov/ct2/show/NCT00775645?term=breast+cancer+and+neuropathy&rank=1
The trials are occurring in almost 300 locations across the US. If you are about to undergo treatment with a Taxane, it might be worthwhile to check it out and participate if you are able.
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More good news from Life Extension for us TN's. Long article but this was the news I wanted to share...do looks like we don't have to worry so much about our weight and recurrence.
Women with hormone receptor-positive cancer who were obese or overweight but receiving optimal chemotherapy and hormone therapy had a 30 percent higher risk of recurrence and a 50 percent higher risk of death when compared with death rates for women of normal weight who had breast cancer. No elevated rates of recurrence or death based on weight occurred in women with two other types of breast cancer, HER2 receptor-positive or Triple Negative, both of which are aggressive forms.
Click on the following link for the complete article.
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Wrenwood - Thanks for the Life Extentions link. It adds a bit of comfort while I keep trying to lose weight.
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Luv & Wrenwood - thanks for the info.
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obxk,thanks you for the welcome. mumtobe,my mo says no scans unless i have symptoms.
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I am three and a half year out now, and suffered miserably from numb fingers and numb toes due to my first Taxol. It began immediately after my first infusion of it so onc changed me automatically to the 3 remaining treatments of taxotere. I had A/C & T and she claimed the taxotere would be gentler on the neuropathy. It was, as it didn't worsen. However, it took ages before I regained the feeling in all my fingertips, but my toes still feel somewhat numb and "tight" - almost like I have little stuffed saugages extending from my feet. I too tried every remedy mentioned - took all the vitamins, etc, but never got a benefit from any of it. Just kind of resigned myself that this too is just another wonderful gift that chemo left me with. I never had any pain, but did have that constant "tingly" sensation in my toes that was most annoying. That finally stopped, but not too long ago. It definitely has gotten better, and for that I'm glad. So, for those of you that have finished chemo and still feel the neuropathy, - just hang in there and give it a little more time (like we have a choice!).
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