Calling all TNs
Comments
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Teka - I am blessed.
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Suze35- ..... (((HUGS)))
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Suze35: ((((HUGS)))) I love your positive attitude, Never give up hope. I will be sending healing thoughts your way.
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Suze-well, that sucks. But, you've got a good attitude and, as we all agree, that fat lady ain't singing yet. Kudos to you for viewing the glass as half full; it will certainly make your day to day life easier to bear and we all know statistics aren't people... they're just numbers. There are plenty of gals in here defying those pesky numbers.
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Suze..hugs to you..and you do have a wonderful mom...this certainly isn't over until the fat lady sings...and well..I'm a little chubby but you are never going to hear me sing!
And about attitude..I KNOW that a good attitude may not help physically..but is sure as hell helps mentally...
Good to talk to you Lovelyface..missed you but know that sometimes we all need a break..
Angelice..I had burning in the pads of my feet when I walked or jogged...and yeah..after sitting down for awhile standing up and walking was a challenge...I though it was the taxol because the AC didn't do that to me..I virtually had no se's from AC..the taxol was a little harder on me due to the muscle aches and pains...but 2 years out and all those se's are virtually gone.
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Thanks Teka, i think it's all just starting to hit home.
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Hieditoo i agree gets frustrating when get told its not chemo related blood noses, sore feet, colds turn in to pnemonia hmmm ...and many other things
Titan i hope it goes soon im just 1 month off chemo
Suze35 (hugs) sending you angel hugs
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Angelice~~ I just finished phase one of my chemo plan. It was taxol carbo, and avastin. At times, the bottoms of my feet got very red and extremely sensitive with an odd burning sensation. At times they were so sensitive that I could barely walk on them and I could even feel the small gaps in the tile on the kitchen floor. How crazy is that? After discussing this with my Onc, we did agree that it was probably a side effect from the chemo, although we couldn't narrow it down to which drug was causing it. It was just odd because it would occur randomly and last for a few days and then just clear right up, only to happen again a week or so later. I also have fibro and some neuropathy and I know that chemo can intensify pre-existing issues, but this foot thing was not anything else I had ever felt from those other issues. It was just odd. Also at times I had some skin peeling as well. The doctor ruled out hand and feet syndrome. It was just some freaky thing all on it's own. I hope you feeel better soon!!
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Suze35: Wow I hate hearing the news. The lymph nodes are there to catch the toxins and things before they get to the rest of our body. I think some lymph nodes may do more of a job than others. This would make perfect sense when we hear that someone had no lymph involvement yet not even a year out they are dx with mets. Maybe your nodes caught these evil cells completely and that's why the cancer is there. It sounds like they definitely did their job for you! Will pray for a clear PET! Can't add much more... we don't have an expiration date that docs can read.0
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((((Suze)))): Big hugs to you!!! I am so sorry to hear your news but I believe a great attitude will only help you to survive BC. Your mom sounds amazing! There are so many other chemo combos you can try--I agree--it ain't over yet. Never give up--we will all be here for you!!!
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Suze - hoping your PET scan is clear. Angelisa makes a really good point about what the lymph nodes do.
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Thank you all for your kind words.
Angelisa, I do hope you are right. I try to remind myself of that when I get down.
I am not too nervous about the PET at this point. I wouldn't be surprised at any outcome. But if it is clear, I will be really hitting the exercise and diet hard. My doctor said that portion of the clinical trial arm was showing positive results, and it is something I can control over the next 7 weeks as I get rads and wait to start the trial possibly. My doctor also said we could replicate the Metformin trial if I want, she thinks it has promise. So, first step is PET, then I have some options.
I think what sits in the back of my mind is how my cancer didn't respond well to the chemo, and what that might mean for me if I go to Stage IV. But I know there are many to try, as long as my quality of life remains decent, I'll fight to the end.
I'll let you all know my PET results when I get them on Tuesday.0 -
AND..just because a few of your lymph nodes were positive doesn't mean that it has spread...I dunno about alot of things Suze..no doctor at all..but do you have any symptoms of anything else? My onc always asks about shortness of breath, bone pain (rib/hip), headaches, vision problems, energy levels, appetite..all that kind of thing...
I've always wondered about that..can you go to stage 4 w/o any symptoms at all?
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Titan - I'm not feeling anything major - no shortness of breath, liver pain, etc. I have some left thigh pain that is a bit odd, and I'm having some head issues, but the leg stuff could be chemo-related and I had a clear MRI 5 weeks ago. What concerns my doctor - and me of course - is that the cancer was in the tissue of my armpit, having left the nodes. And that it was growing during the end of chemo. I do think you can be Stage IV and not have symptoms...but you don't know to look until the symptoms show up.
But, until I know for sure, I am Stage IIIc, and I will fight like heck to stay clear! I'm hoping that anything that got out was vulnerable enough to the chemo before the crap in my breast started regrowing, and that I caught it locally in time. It's a bit of a crap shoot anyway. I'm preparing for the worst, and hoping for the best...which isn't the best coping strategy, but for now it is keeping me going.0 -
Suze, I am so sorry to hear the news. Keep fighting!!!
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Suze35- My best wishes for a clear scan! You have shown such courage - fight, fight, fight!!!!
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Sounds like an all-around nice guy---ooops...is my sarcasm showing??
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good morning ladies,
suze35 will be sending you all the positive energy I have left. i know you must be scared and angry. but the other ladies are right they are just numbers are you going to do a different round of chemo??
I am gearing up for round number 2 on thursday I cant wait till I am saying round 6 and then done with chemo. trying to get all my housework and laundry caught up so I dont feel guilty on my couch days after chemo lol. oh also need to shovel lol 8 inches of snow overnight
hugs to you all
kymn
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The Xeloda and Gemzar didn't work well at all... only did 3 cycles and then quit. I'm on Navelbine now, and it appears to be working. I am scheduled for second opinion with Dr. Joyce O'Shaunghessey (one of the directors of this website!) at Baylor Samons Cancer Center in Dallas in a few weeks to see about getting on a new drug that doesn't even have a name yet... PEG-SN38. I meet the criteria, so I'm hoping..... !
Enzon Opens A Phase 2 Study Of PEG-SN38 For Metastatic Breast Cancer
January 7, 2010
Enzon Pharmaceuticals, Inc. recently announced that the first patient has been treated in the Phase 2 studies of PEG-SN38 for metastatic breast cancer. PEG-SN38 or EZN-2208 is Enzon's PEGylated form of SN38, the active metabolite of the cancer drug Camptosar (irinotecan HCl injection). The study is designed to evaluate the efficacy of single-agent PEG-SN38 in two groups of patients who have received prior therapy regimens of anthracycline and taxane or anthracycline, taxane and Xeloda. The PEG-SN38 compound is currently being evaluated in a Phase 2 study for metastatic colorectal cancer.
"We continue to be encouraged by our PEG-SN38 compound and are pleased to be advancing it into additional areas of cancer," said Jeffrey H. Buchalter, Enzon's president and chief executive officer. "We look forward to providing updates on PEG-SN38 and the rest of our novel pipeline as data becomes available."
"Irinotecan is known to be active in metastatic breast cancer but toxicity has limited its broad use. We are very excited about evaluating the novel PEG-SN38 compound in hopes that it will exhibit an improved treatment for metastatic breast cancer patients," said Dr Joyce O'Shaughnessy, Baylor-Charles A. Sammons Cancer Center.
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TexasKaren: I am so glad this is working for you and I am also glad you came here to share it with us!
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Kymn - as long as my PET is clear, I'll be doing a clinical trial that will either be Avastin with metronomic chemo for 6 months, or exercise/diet. If I get the exercise/diet arm, my doctor said she'd be willing to replicate the Avastin/chemo, so she's going to push my insurance company again, and if that fails and my doctor TRULY thinks it will help me, my mom offered to cover the 7 doses of Avastin. Right now my doctor doesn't think adding more heavy chemo is the right thing to do - I've already had 4 biggies, and we know my cancer initially responded, but figured it out in the end. But she is still leaving it up to me and it is an option. Right now, we are just taking it one step at a time - I have to get rads done before anything anyway, so I have a bit of time.
TexasKaren - good luck with your consult, I hope you get in! I'm also glad to hear the Navelbine seems to be working on your mets.0 -
Good luck Texas Karen! You know..all the talk about chemo and its se's...My father in law had lung cancer back in the 70's. He took chemo...My DH said that he was on a trial drug...He really got sick from the chemo.he couldn't get off the sofa..My sister in law's mom had chemo in the 80's..she was bedridden for a week or two after each session...Chemo now certainly isn't EASY but for the most part..it is doable...back then it was so very hard on the patient. When I had chemo everyone thought that I would be puking my guts out for 6 months...NOT....sure if affected me but I still had life....I think sometimes people were amazed that I was actually working and talking and doing things...
Hey Teka..did you apply for the "girlfriend" position? HA HA..
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I agree totally! We are so fortunate (to be the UNfortunate ones with this stuff!) to be living NOW, when treatments are so much easier. They're not FUN at all, but we don't spend days hanging over the toilet or bedridden. They have improved the steriods and the anti-nausea meds, and the dosages for the chemos have become more targeted; did you know that in the 70's, almost everyone on Adriamycin got almost 3 x what we get today?!?! They hadn't figured out yet that a lower dose was just as effective. Thank God for research, and for those who continue to support it!! There are new drugs out there all the time, and one of these days, this terrible beast will be tamed forever!
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By the way, I still keep in touch with my original group, October 2007 Chemo Girls, and they are so supportive of me now. I'm the first (and pray God the ONLY) one with recurrence/mets. I couldn't do without them; but, it is great to find this forum with ladies who are going down the same path I'm on also..... I am adding all of you to my prayer list immediately!
Teka: the ad was funny, but I already have the dream hubby; but I might have a few desperate friends out here in lonely west Texas to pass that on to! LOL
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TexasKaren - I think I'm the first in my chemo group (Aug 09) with mets too. They too have been very supportive and funny. I wouldn't wish this on my worst enemy (if I had one). I hope and pray that all I (we) have gone through and are going through will be the building blocks to helping people years from now. I did a trial the first round with chemo, but opted out this for now. Although, I have been thinking more and more about the trials I was offered, the aggressivness of this beast and wondering if I should go ahead and do one of the trials........I'm rambling again.
Titan - THANK YOU for your support on my other thead over in Stage IV, where I talked about my meltdown. My pain is getting under control with the 12 hour meds, combined with the percocet for break through pain. It is so, so much better than it was just 5 days ago.
I hope that everyone had a wonderful weekend.
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I'm thinking positive thoughts for you Suz, Texas and Jenn and for all of us.... BTW, I could use a nice guy, and I don't smoke....
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I only have this it add. They are now taking your 'saved' tumor and testing it w/ different types of chemo to see which one responds better. Please follow up w/ your doctor about this. As you know, our tumors are saved for research.
About the exercise thing I have read where many ladies have pushed themselves into remission w/ exercise and diet.
Hang in there girlie! ((((HUGS)))))
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Ok..Fighter..so my tumor was saved for research..that's fine..I think mine is in New Jersey somewhere. thought I'm not sure why it is there...I would like to have it back so I could jump on it, cut it into million pieces and put it down my garbage disposal...oh..and have my cats throw up on it.
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Titan- sounds like a plan!0
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IBernieEllen
'm also Bipolar 2 and have not had any manic episodes during treatment. Just kind of shut down and went with the flow. Perhaps your onc dr was thinking about the steroids. I had DD A/C x 4 and half way thru 12 weeks of Taxol. Stay on all your meds, up the frequency of your psych visits and be sure the pdoc knows about your bc. This is a very high stress time in your life. Take care of yourself
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