Calling all TNs

Teka

JenC,

I just got the second private post.

Fighter_34

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.

gillyone

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.

Anonymous

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.

Suze35

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 .

Titan

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...

Suze35

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 :-(.

Anonymous

And torture it is...

cc4npg

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.

Lynn18

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?

Babs37

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.

Anonymous

Babs? Huh? Frozen is preferable over fresh? Do tell.

Titan

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!

Teka

My Grandmother used to pick and can wild blueberries, which were so good in the winter as a side dish.  

Anonymous

Well, I shouldn't be too concerned anyway... I usually get mine right off the bush!

Titan

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!

Suze35

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 .

cmksocal

If you have a Trader's Joe in your area, you can get frozen wild blueberries there.

Colleen

Babs37

 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.""

Anonymous

Interesting.. thanks for the info.

Kymn

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

Titan

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...

Anonymous

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.

Sugar77

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! 

Anonymous

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...

Anonymous

Greetings from Lazurus... my back from the dead Mac. Tweeked this, did a little computer dance and all was well this morning!

LRM216

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

cc4npg

Linda:  I am so very sorry for your loss.  There are no words I can say that will help.  I've not suffered the loss of a child, but there have been times when mine had something very wrong with them, and there've been times when I couldn't locate them... and that was a feeling I'd rather never face again.  I'm opposite from where you are... my mother died tragically and suddenly in a head on collision May 10th, 5 years ago.  It's had a lifelong effect on me and my children, who were extremely close to her.  Mother's Day for us has been tainted too and we have good days and bad days still.  I do have a daughter who is BRCA+ like myself and we've recently started all the testing for her.  I really try to forget Mother's Day... and almost did this year.

On another note, my onc doesn't do scans.  I know bunches of us here haven't had any scans.  Mine won't do them unless there is good reason because of all the stuff that shows which isn't anything to worry about.  I believe some of the reason is because of insurance, and some is legit because they don't want unnecessary worry/testing.  I pray a lot!

bak94

Linda, my heart goes out to you. I also wonder about the scans. I had a 2,5 cm tumor seen by mri and my doc ordered all the scans. My insurance denied a pet/ct scan. Thank goodness my docs pushed for it and they found internal mammary nodes positiev, but no underarm nodes positive, so it did make a difference on treatment for me. The mammry nodes did show up on mri, but the pet confirmed. It's scay, but I would rather know so I can fight it appropriately. My first time around 8 years ago I only got a chest xray and bone scan before I statred treatment, and no scans at all other than breast mir' after that. I am thankful that worked out that time (this is a new primary I'm dealing with).

I aslo wish I would have been more poractive or given the choice of bmx. but I was so scared and just kinda followed what the docs said. This time I searched out my docs and got 2 opinions, and tested for the brca, which I am positive.

Again, Linda, my heart goes out to you. I hope you and your granddaughter can find some peace and comfort this weekend and have an enjoyable day.

Titan

I didn't have any scans either..I did have blood work and a chest x-ray prior to surgery and treatment....but I have been told to watch myself diligently..which I do..and Lisa did also...she knew something wasn't right..would it have made a difference with Lisa..I don't know...you just never know with this crap.

I don't get too excited over Mother's Day either...I tell my kids not to spend their $$ on me..just a phone call to tell me that they love me is good enough for me... I still do dishes and laundry on Mom's day anyway.I really not one to sit down and relax either