Calling all TNs
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Titan: I wish your uncle the best.
Insurance companies will always try and take you through obstacles before they decide to pay. Hang in there Tracie23.
Started the clinical trial yesterday. I think I am going to like it. Remeber ladies to always ask if you can do anything more to help yourself????
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Fighter- What' s the trial that you just started on?0
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Just got another message from Suzie somthing about that "pay us 100.00 thing" Any suggestions on where I can report this. Thinking possible illegal solicitation and am going to look into it. Are alot of you getting this?
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An immune boosting trial being sponsored by NCI (National Cancer Institute) 4 slots are left. However, I see that you are in Quebec correct? There is a lady from LA that participates as well.
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Fighter- I could not find this trial. What is it's specific name and where is it being done?
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www.sibley.org/ and in the search function type in clinical trials.
And this would be the one you are looking for WRAMC 07-20029. The clincal nurse in very open in regards to schedules. Doesn't take long and it's only every 21 days and no palcebo(?) you will be getting something that will BENEFIT you.
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I just checked in with the July 09 chemo group and a fellow TN Lisa (pauldingmom) who started that thread is not doing so great. Please think good thoughts for Lisa and her family.
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gillyone- I have been thinking of pauldingmom all week. In fact, I re-read the first 100 pages of this thread trying to figure out what went wrong with her. She sounded so good at first and then, next thing I read she was having WBR with mets to lungs and liver too. What happened? Her story scares the crap out of me... early stage, no nodes, not BRCA then POW Stage 4. I can't imagine how difficult this has been for her.0
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Gill - I'm so sorry to hear about Lisa. She is in my thoughts.
My MRI came back clear today - degenerative changes. So I'm going to try some PT and round-the-clock Ibuprofen to help with inflammation.
Met with Dr. Mayer at Dana Farber today regarding a clinical trial. The good news is I am a good candidate, even with the supraclavicular node, she said radiation would be sufficient for enrollment. She was also very nice - she basically said if I don't get the Avastin arm, and I was not comfortable with that, it was my choice to withdraw. I asked her nurse if the computer randomized you and she laughed and said yes, otherwise they'd give everyone treatment, lol. Anyway, it is a long trial - 6 months chemo/Avastin, then another 2.5 years of Avastin as tolerated. So I'm going to sign up for it. She made me feel comfortable about the lower dose chemo.
If anyone is interested, it is for post-surgical patients with residual disease, no Stage restrictions for TN, and will be opening up across the country.
One small bit of good news - apparently my pathology report did show SOME response to chemo, which I had not known. A sliver of hope.
Thank you everyone for listening and and your support. It helps me stay sane
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Gilly..I think about Paulding mom all the time..if I remember correctly she thought something was not right but she was ignored.....I know, I know..what "they" say...it doesn't matter...but I still think that a couple of mets are a different story that alot of mets...but that is just my thought..I guess the dr's know more than us...
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Heidi - scary, yes. Terrifying. This disease just has no rhyme or reason, no rules, no pity. I am so sad for Lisa and her family, and for all of us who have to deal with the mental torture of uncertainty :-(.
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And torture it is...
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Titan: So sorry to hear about your uncle. I'll keep him in my prayer.
Suze: You're definitely getting some good news in place of all bad! Happy to hear the good stuff!!
Heidi: Very cute kitties!
Sorry so short a reply... been super busy with a computer repair business I'm helping with and trying to catch up on my grass with all this rain.
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Suze35: Good to hear your MRI was clear. The avastin trial sounds interesting--is it only for TN?
I have been thinking about Paulding mom also . . .she was one of the first to welcome me onto this board and I enjoyed her posts . . .she has a great sense of humor. I am sorry she has progressed. Yes, it is scary how randomly people progress with this TN, even people with early stage. Lisa, you are in my thoughts and prayers.
So tomorrow is my 6 month visit with my onc, Ugh. I'm sure it will go well, but then I will spend next week freaking out everytime the phone rings, wondering if they are calling me back about my bloodwork. Does anyone else do this?
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Dr Oz: Wild Blueberries Fight Cancer
Mary Ann Lila told Dr Oz that Wild Blueberries have chemicals in them that prevent many stages of Cancer all at once. Doctor Oz said that he did some research and found that these Wild Blueberries are exposed to harsh weather elements including sun,
wind, cold, pests and infections. However, the plants do not die because they release chemicals to protect them, and these same chemicals are what protect us against Cancer. If you have Cancer growing in your body, then the chemicals found in Wild Blueberries helps to starve the Cancer so that it shrinks back down.Dr Oz asked Mary Ann Lila where you can find Wild Blueberries, and she said that you can find them in just about every grocery store. But do not look for them in the fresh produce. You will only find Frozen Wild Blueberries and they cost around $5.
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Babs? Huh? Frozen is preferable over fresh? Do tell.
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Heidi..I don't think it is a fresh vs. frozen question as far as nutrition..Blueberries are very perishable and selling them frozen is probably alot easier for the manufacturer (and the grocery store!)..
I have about 5 lbs of blues frozen in my freezer...they are pretty good frozen!
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Well, I shouldn't be too concerned anyway... I usually get mine right off the bush!
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Now I'm getting hungry! I'm going to taco bell for lunch. Yum! Already checked out what I'm allowed to eat there..not much.. The fresco menu for me!
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Me too Heidi! We have 8 blueberry bushes on our property, all organic, yum. I eat blueberries in my oatmeal almost every day.
Lynn - the trial is open to all TN with residual disease, ER+ Stage 3 at any time with residual disease, or 2B post surgery, but no Her2+. Restrictions are no post-op chemo, no prior angiogenesis inhibitor. Honestly, she was pretty open - my use of Carbo was fine, my supra node was fine, she even said if I "accidentally took a Metformin" it wouldn't kick me out, lol.
Dr. Mayer talked about how Avastin was showing the most promise for TN, and that some stats were going to be released soon to that affect, and that it works very synergistically with the metronomic chemo, they have found. She was obviously opposed to the FDA removing its use for breast cancer, she feels it has a very important place in our treatment. I really felt more comfortable with this after meeting with her, and the idea of doing a chemo treatment that could help but leave me with a good QOL is appealing.
Titan - mmmm...Taco "Hell". I haven't eaten there in so long! I was 1/2 bad the other day at Burger King, and ordered a Whopper Jr. - but took off the cheese and mayo, and it was only 10g of fat. I'm trying!
Beauty of a day here, after rain for the past two. DH is home and we are grilling tonight. I'm being a good girl and having flounder after my pig-fest the other day
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If you have a Trader's Joe in your area, you can get frozen wild blueberries there.
Colleen
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Heidi- I think that because wild blueberries are more rare because of the seasons they often sell them frozen. But they keep the same nutriments even if frozen. Cultivated blueberries are all year long so you can get them fresh. But when you read about wild vs cultivated you realize why wild is better then cultivated (even if both are antioxydant) for fighting cancer.......""they release chemicals to protect them, and these same chemicals are what protect us against Cancer.""0
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Interesting.. thanks for the info.
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Hi girls, have been out of the loop for a week, really bad SE this go around, tx number 3 kicked my ass. So sick, have tried so many meds now trying to control the nausea sigh I just dont know where I am going to get the strength for the next three.
I have to read and catch up but wanted you to all know I am still here kicking
I feel very sad and scared reading about pauldingmom
Hugs to all
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Hey Kymn..good to hear from you even though you are feeling bad...its scary when they say the word "cumulative"...in regards to chemo...so you are 1/2 way done? Hang on to that...you shouldn't have to feel that sick..I'm sure you have told your onc but maybe they need to up the anti-nausea drugs b-4 your treatments..
I feel scared and heartsick about Paulding Mom too...I really can't express in words how I feel about this...
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Add me to the list of people sad and sickened over pauldingmom. And frightened. My 5 year old MacPro just died, so I may not e online for awhile.
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Hi ladies - I'm sad to hear about Pauldingmom as well. She was always such a joy on these boards. I feel for her and her family. So unfortunate and crappy all around.
Kymn - sorry to hear of your nausea. I think you'll find the SE's of taxotere will be different than FEC. Achey was the feeling on Taxotere for me. Hang in there..you're half way there!
Heidi - take it to the Apple Store. I'm on a MacBook Pro right now and our's died the other day. My DH took it on Wednesday to Apple and they fixed on the spot and now it runs like a charm!
We're going away this weekend to see my mom. Happy Mother's Day to all the moms!
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Typing from my Nook...display on Mac has gone black may be too costly to repair.Damn...just bought a ew tractor and now this. I'm afrid my China trip this Fall ay have to be put on hold.My bucket list is high on travel...
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Greetings from Lazurus... my back from the dead Mac. Tweeked this, did a little computer dance and all was well this morning!
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Hello Ladies:
I haven't been posting since the death of my daughter on March 24th, but I do come on from time to time to read your posts and keep abreast of all that is going on. Her death has been unbearably painful and my loss so bottomless, that ironically, my own illness seems of little matter to me. I am doing "ok." I have her daughter to continue to raise (thank God), work every day and am functioning well on the outside - it's the inside of me that is so broken and lost. While I am the cancer patient and she was not, she did have years and years of pain and suffering from intestional issues that just kept worsening with every damn surgery she had. At the end, her little body could not absorb any nutrients from anything she was able to eat and her cause of death was "failure to thrive." Hard to accept as she was 39, not 99. My only consolation is that nothing can hurt her any longer - no more tubes, central lines, infections, etc.
I am posting now after reading of Pauldingmom's status. I keep in touch with her daughter through her facebook page. I too am sickened by all that has happened to her. Such an insidious and ugly disease we all have. This is heartbreaking. While I did not know Lisa personally, we have conversed since we were diagnosed just months apart. In some of her earlier posts, she always questioned the fact that she had no scans ordered for her at the beginning of her diagnose. I always thought this was pretty scary, as even with early diagnose, I did not know of many girls that didn't have oncs that insisted on bone scans, full body CT or MRI or Pet. She was always troubled by this, but her oncs didn't feel it necessary. This alarmed me as I know the policies of most of the top of the art hospitals here in our area, and often wondered where she was going and who she was seeing. Perhaps she was more advanced at diagnose - only scanning would have shown this. Nonetheless, I am heartsick for both her and her loved ones.
For all the newbies just beginning their treatment - I can't stress enough how important it is to have your initial scans, and while we come into this disease frightened beyond belief and basically naive until we earn our "3 week Ph D" in our disease - if you do not have an onc that insists on scanning prior to treatment - find yourself another one - as soon as possible.
Happy Mother's Day, dear sisters - this is one I am most certainly not looking forward to.
Love,
Linda
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