Calling all TNs
Comments
-
Tif: Thinking about you today and I hope that, like the rest of us, it's just the aches and pains remaining with us from chemo and nothing else. I sometimes feel as if I am a 90 year old woman. Hugs!!!
Suze & Laurajane: Thinking about you and sending many good thoughts yours way!
0 -
Just joined- I'm 3 yr TNBC survivor still trying to daily get over fear of recurrence.
0 -
My nose bled, too. Chronic sinusitis put be in hospital neutropenic. I was on the Avastin trial in 07.
Took 14 days to get my white count up enough to be released. Got the Neulasta shots after treatment after that and went thru rest as well as possible. I'm 3 years out of treatment and have joint pain in shoulders and knees- don't know for sure if that is just getting older (54) or if the Avastin helped it along somewhat!!
0 -
Thanks everyone!! The scan is done and I should have results tomorrow. I hate how BC has turned me into a hypochondriac! Fighter- it truly is living in fear!
Bak- sure hope things regarding work get better!
MBJ- I am really hoping it's just chemo after effects or "old" age!! I remember the good old days ( a little over a year ago!) when I could get down on the floor and get right back up- now I need a crane to get up!!
0 -
Thinking of you and praying your test goes well TifJ. I don't think you are a hypocondriac, I think it will be hard to get out of the vigilant state we are in during our fight. It is hard to go from hearing, "let us know if you have any issues ASAP" to "relax, everything's fine."
0 -
Thanks Lee Ann. Trying to relax, but pretty much impossible!
0 -
Tif - thinking of you, and keeping everything crossed that all is well tomorrow. Ativan - or wine! - is your friend tonight
.0 -
Tifj - I'm sending you good vibes that all will be okay....and I feel it will.
Bak - sorry to hear about your situation. Sometimes people are senseless.
Titan - how was the wedding? Hope you got some dancing in and a little wine perhaps!
Luah - my speech went fine. It was over five minutes long but here's one paragraph FWIW:
"My tumour was a rare and aggressive subtype called Triple Negative. This kind presently has limited treatment options other than chemotherapy. Triple negative patients do not respond to the drugs used to target other types of this disease and research is URGENTLY needed."
Here's a paragraph near the end of the speech that I also wanted to share:
"Throughout my journey I've met numerous women fighting the same battle and I've gained strength from each and every one of them. I'm participating here today for all these wonderful women so we can see the day when our daughters and granddaughters won't have to face this terrible disease."
0 -
Thanks Suze! I am weaning off the Ativan! I am down to 1/3 a pill every other night. Should be off soon. I will settle for a bath and a good book! Are you still waiting? I hope you hear something soon!! Have a good evening!
0 -
Very well said Sugar! Thank you for the good vibes!
0 -
Hi Prissy..welcome to the TN thread! I'm assuming you are new since you have had just 2 posts..sooo..3 years out ..hey? What is your story? (ok..I'm totaly nosy here)..3 years out is GOOD, GOOD, GOOD!
Tiff..hoping that your scan goes well and it is just arthritis! I had a creaky neck and my onc said that it was arthritis..every pain isn't cancer but it is a good thing you are getting it checked out.
It's so hard...I just turned 52 and it's like..is the pain just from getting older..or mets..freaky...
The wedding was absolutely wonderful! I feel so happy right now..and to tell you the truth..so far away from breast cancer...for now........I will be seeing the onc and BS in a month...I really don't want to see them anymore...but I will...dang it.
I will post some pictures as soon as I can..promise
0 -
TifJ:
I'm thinking about you and am anticipating all good news for you tomorrow. Hang in there, I know this is so difficult - the waiting and the apphrehension.
Titan: I'm sure the wedding was beautiful and can't wait to see some pics when things quiet down a bit for you. Congrats to you and hubby on the marriage of your daughter.
Sending all good thoughts, prayers and vibes to everyone on this thread.
Linda
0 -
Well, I spoken to all my docs now that I've had the surgery for the chest wall recurrence. My RO says, well, now when I look back, there is a little shadow where that new tumor is. It was probably there when we started radiation and radiation is best on the microscopic disease. (Radiation started 11 weeks after BMX). So, now I"m back on rads 4 days post op and I'll be having a lot more! (another field plus 2Xday boosts). My oncologist basically said there is nothing more, no drug to give since I don't have any metastatic disease. I heard: just sit around and wait for metastatasis and death. Soooo, I'm looking into second opinions. I just don't think I can sit and not do anything. Even if they aren't sure a chemo drug will work, at least its something!
Oh, and to top it off, brain scans aren't recommended unless I have symptoms. Well, what does that mean? I've had a headache from a viral upper respiratory/allergy thing - how long do I wait until I say something. Does this mean I have to be a hypochondriac now, worrying about every little twinge?!? That's worse than actual cancer!
And then, when I'm crying in the office, begging for chemo, she just says: "there, there. We're doing everything we can for you." How patronizing!
Just my little rant on a monday night
0 -
Andrea, how scary! Would it be possible to find another oncologist who will give you some input into your treatment plan? Someone willing to go to bat for you? It's your life at stake, so I don't think it should be up to someone else to decide how to treat you.
I went for more chemo (clinical trial), BMX, and when the RO said it was up to me whether or not to do rads, I went for it. I know my MO thinks it was overkill - he practically rolls his eyes at times - and his attitude irritates me. It's not his life or peace of mind at stake.
0 -
Survivor, glad you are getting a second opinion. hopefully the rads will knock it out and you will be able to tell with scans. It would be nice to get some extra assurance from chemo. so hopefully you will get some different answers rather than to sit and wait.
0 -
I thank God everyday for a boss who said don't rush things. I work a Mar- Oct job a summer restaurant. Some boss's have more compassion than other's. I will be getting away this weekend to Boston for my niece's wedding. I am also on #23 of radiation and they said I could skip Friday so I won't be sore for the wedding. After this week I have only 5 rads left when I get back. and than I am done.
0 -
Andrea: My onc's rule of thumb is to wait out symptoms for 2 weeks... I'm talking aches and pains not something critical like a new breast lump or seizure or something.... If they persist, call for an appointment to get checked out.
0 -
Teka-I agree trust your gut. You feel better knowing so.
0 -
Luah - thank you for that advice. That is the concrete something I need!
Teka - what is symptomatic BC?
I have my second opinion appt set up. This gives me reassurance that I'm doing the action I need to do. Hopefully they have plan besides wait!0 -
Survivor2Be- GREAT!! So glad you are doing this. Hang in there. You may already know this but you can have your records transferred in advance to help speed up the process.
0 -
Sugar: Just from the little you shared, your speech sounds amazing! Thank you!!!
Titan: So glad you finally had the wedding go without a hitch-Can't wait to see the pictures. How is your nose?
Tiff: I hope they don't make you wait long and it's NED!
Prissy: Welcome, and I agree-3 years NED is great! I think if I can just get to the 3 year mark I can start breathing a bit easier no matter how many aches and pains I now have!
Andrea: I have alwways gone with my gut since I started this BC ride-get a couple second opinions-travel if you have to. It's worth the peace of mind. Also, if there are any local support groups this is how I found my team-throough women who have been there, done that! Hugs!!!
0 -
Suze and LauraJane: Any news??? Thinking of you both! Hugs!!!
0 -
Titan - so glad the wedding went well, it sounds like it was beautiful. Pictures!!!
~~~~
So the trial has opened, yay! Just got word this afternoon I'll be doing the pre-stuff this week, and will be starting treatment next week, probably the 13th. Still a little ways away, but at least there is a date there.
I've unfortunately been dealing with really bad back pain, most likely from the mets on my sacrum. It went from tolerable to absolute HELL in one day, but I got in to the doctor quick and have started Morphine and Decadron, which have pretty much eliminated the pain. The steroids are tolerable (only at 8mg/day). I had an MRI today (2 hours!!) to look for any damage to the bones or nerve impingement, and will go from there. If there is nothing too damaged, I will continue to medicate for the pain because I don't want to wait for treatment to do palliative radiation. And if the treatment works, then it will help the pain anyway. Also a bonus - the Morphine and Decadron help my cough tremendously as well.
I got hit with my PET report yesterday, and my doctors were kind of sugar-coating the results. Well, not kind of. Apparently I have mets in pretty much every lymph node from my neck to my pelvis - both right and left side, numerous bones, a lesion in my neck, and several liver spots. Um, what happened to no organ involvement??? "Extensive metastatic disease" was the finding. Sigh. I guess they thought since I was Stage IV anyway, it didn't matter. But if I had heard this report from the start I might not have waited on the study. It is my fault for not getting a copy of the report, so water under the bridge. I'll be doing the study, and keeping fingers crossed it works.
I hope everyone is doing well. It warms my heart to see so much GOOD stuff going on. Let's keep it up!!
0 -
Teka - thanks - I will read up on lymphderma and scar tissue. I had only one node taken out which was negative (the main node, forgot what it is called).
Suze and Laurajane - Any News? How are you both doing?
Hope everyone has a great evening!
0 -
Suze,
I'm so sorry about the report - I'm glad you have a date set for treatment and I hope the treatment knocks every one of those mets out. I'm hoping the tig--- will do the trick since it is something different from regular chemo and something you have never had before.
Teka, thank you - I was at the hospital most of the day today and am trying to get some work done now. I won't have any results until Thursday most likely. My stomach has been rebelling against the barium all day - or maybe its nerves. I couldn't take anything to relax because I have to work.
0 -
christina - I'll be thinking of you this week. I didn't know you were getting some tests, so I hope all is well. When you get home, definitely take advantage of the "relaxing" pills. Keep us posted!!
0 -
"I guess they thought since I was Stage IV anyway, it didn't matter. "
WTF? Damn right it matters. I'm sure there are plenty of Stage 4 gals that would prefer not to see "extensive metastatic disease" in their reports, hoping to keep the FC confined to bones vs. organs. Obviously the good doctors don't have personal experience with those types of feelings....
Here's to wishing your clinical trial experience kicks cancer's butt!
0 -
Suze, that PET report sucks but you're a true champ with an inspirational attitude. I'm so glad to hear you have the pain under control. Hopefully you'll fly through the treatment prep and see some quick results from the new regimen next week. I'm thinking of you and hoping for the best, every day....
0 -
Hello Ladies,
I've been keeping up with all your news on my Phone, but it isn't easy to post on it. I had made notes, to message you all when I stopped home today, but forgot them at my Mom's, lol.
Laurajane and Suze...I'm so sorry for all the bad news you've both received and pray that they find a combo that works. Suze, I laughed when you mentioned how young your doctor is, do you by any chance have Dr. Ruddy? When I first met her, she was so young, I literally looked around the corner to see where she had parked her tricycle! If you have your first treatment on the 13th, would it be all right if I stopped by for a minute and met you? I'm going to be up at DF for a surgeon's appointment on the 13th.
Kymm (and there was someone else, but I can't remember who) I'm so sorry that your husbands apparently have lost their minds. There is no words for that kind of cruelty.
Titan, just wanted to offer my thanks for you for starting this thread, I don't know what I would have done without all the advice I got from here.
To all the new ladies, welcome, these women will offer you wonderful advice.
To everyone, I want to give you my sincere thanks for all that I have learned from you. Tomorrow is my last chemo (12 Taxol, 4 DD A/C). Through the process, I would listen to the advice from my onc. and weigh it against the advice I got from you.....and you ladies won the majority of the time! I have had almost no side effects except for a little fatigue and neuropathy from the Taxol. No nausea/vomiting, no bone pain (used your claritan/zantac tip and told the onc. afterwards), no mouth sores, as close to SE free as you can get. Thank you ladies!
I think it was LJ who suggested we post something fun we had done? This video was taken the weekend after my second A/C. It's a flashmob belly dance that I participated in. (I knew I should have had kids, it would be so much fun embarassing them) I'm on the right in black with the long red hair (yes, wigs CAN be fun!)
http://www.youtube.com/user/ancientartstudiosvid?feature=mhee#p/a/u/0/ZWuanSXZHHs
0 -
Off to Girl Scouts with my daughter, but wanted to post: Bone scan is normal- Blood work is normal!!! Yay me!!!
Suze- Glad the trial will begin soon. Thinking of you often and in awe of your courage.
Will catch up later!
Thank you everyone for all the good thoughts, vibes and prayers!!
0
