Calling all TNs

TifJ

Stupidboob- The steroids I took before and after treatment affected my vision. i couldn't read anything without reading glasses, but it did pass after a week or so. My onc said that the steroids cause the lens in the eye to thicken causing blurriness. I had TC x4. I hope it gets better for you soon!

Kymn

good morning ladies from wet and soggy southern alberta. My god we have had so much rain this spring and all this week its going to rain some more. When are we going to get spring, well I guess I should just be hoping for summer at this point.

Suze35 so jelous of your car come pick me up and we can cruise with our hair down....LMAO....

Rella40 no not the last one yet its # 5 . I did FEC too the first 3 it was brutal on me. Doxetaxol isnt the greatest but it doesnt last quite as long as the FEC side effects did so guess thats something to be positive about right .

Tiff so sorry to hear about the SE from Rads, I am nervous about them too, I keep hearing that its so easy but I dont know I read an awful lot about nasty side effects from it that dont just lift in a week or so like chemo.

Blondelawyer so sorry things arent going smoothly for you. I sure hope you get your answers soon, I just hate waiting.I wish I could just sleep away the next few months and someone wake me when I am healthy again and can continue living the way I want to live but alas I must find a way to live this new way and find joy. I do but some days its really really hard.

Titan thank you for always being so encouraging to all of us still stuck in the dredges of chemo. I hope I am as helpfull as you when I am through all of this.

Back to to work girls, hope you are all having a great day. I am in the chair on thursday

Hugs Kymn

MBJ

Kymn:  I remember when I was at #5 of 6 and I couldn't get to the end soon enough!  You are almost there and a year form now it will all seem like a bad dream.  Hang in there!

Loislee2

I have been reading posts since my last post. My thoughts and prayers go out to those who are going through the hard times of this disease and I am blessed by all the support and encouragment you all give each other.

Since my last post I have found out for sure that I am TN. I called the Breast Cancer Care Coordinater at St Patrick Hospital here, and she answered all my questions. Today I am going to a support group for Breast Cancer. It meets the first and second Tuesday of the month. I also started a Fit to Fight excercise class and 2 ladies that attend that are also TN. They invited me to the class I am going to today. I went to a Look Good Feel Better Class for people with cancer last week and was given 3 wigs. The American Cancer Society here got a donation of 300 wigs. So as the days to starting the chemo(June 16th) wind down, I am getting familar with what I may go through. I signed up for the Relay for life walk that is here on June 17th. I don't know if I will be able to attend since it is the day after my chemo starts, but I will go if I am able. 

I would like to share this song that has helped me through this time. "Blessings"

Blessings to you all!

Anonymous

Suze... nice wheels! We had one when hubby graduated USNA. Enjoy!

Anonymous

While on the subject of wheels....

Here's our current fun car. Notice MacFry enjoying the view from "the top". He loves to feel the wind in his ears!

Luah

Loislee2: Way to go - you're getting everything in place!  Exercise is one of the best things a TN can do to reduce the risk of recurrence. And I found it really helped me through the effects of chemo too. Plus, meeting other women going through the same thing is good for our emotional health.

Fighter_34

Nice cars ladies!! Vroom 

Exchange surgery for me on the 9th wish me luck and my first 3 month follow-up appt on the 14th. So for the next month I will have to be careful w/ what I eat becuz exercising will be limited.

Take care signing off for the next week to rest and relax.

rella40

Fighter Evjoy your r & r hugs and prayers for your surgery & follow-up

Suze35

Scan was CLEAR! Clear clear clear clear! OMG I am so happy! I can't tell you how worried I was about this one, with the nausea, twinges, etc. I feel like going into this next round of chemo I actually have a fighting chance. Thank you all so much for your prayers and good wishes. They worked! I now get a 3 month reprieve before anymore scans...yayyyyyyy!

Suze35

Heidi - sweet ride! MacFry looks like he's in heaven! I think my poor old doxie would be beside himself with ecstasy...I'll have to give him a whirl :-).



Fighter - good luck with your exchange surgery, I'm sure it will go smoothly for you. Eating right and exercising...need to join you there again! Keep us posted on your follow up...



Rella - I don't like to rely on Ativan - I get very physically dependent on it and it's a bitch for me to wean off of it, but there are times when the benefits far outweigh the drawbacks. Getting some rest is one of those. Hugs to you.

mccrimmon324

Suze35-I'm so happy for you!  Don't post that much but have been reading about your tests, so glad you are Clear!

Titan

OMG....MGB  I have read that Stephen King story several times! 

TifJ

Fighter_34- we are diagnosis day twins!! Best wishes on your upcoming exchange, I should have had mine early last month, but a port infection slowed me down! Hope it is smooth sailing for you!!

Lynn18

Suze35:  So happy to hear good news!  That's great you get 3 months with no scans.  I love your car, it's so cute--I love the orange steering wheel.

Heiditoo:  Love your car too.

I want a fun car too!  I'll have to start saving up . . .  

sukie10

Hi everyone. I have a dilemma. I am currently doing neoadjuvant chemo for a tumor that grew to 7cm in a matter of weeks. My response has been very good. (It was clinicallly undectable after 3 of the 8 treatments). I'm going in for #6 tomorrow. Lymph node involvement was undetermined at diagnosis. 2 doctors thought yes, 2 doctors thought no. My onc feels that because I have had such a good response to chemo and will be having radiation after,  lymph node removal would be unnecessary. My BS feels because the cancer is TN and extremely aggressive I shouldn't take any chances. I don't want to be stupid but I don't want to deal with more than I have to. Basically it sounds like a 50/50 split to me. I'm aware already of my odds with a tumor that aggressive and large, I'm not even sure if removing lymph nodes would benefit me at this time. If they were involved and there is a recurrance somewhere it will turn up anyway, If they wern't involved it won't matter. If any of you have comments please chime in.  

sukie10

Hi everyone. I have a dilemma. I am currently doing neoadjuvant chemo for a tumor that grew to 7cm in a matter of weeks. My response has been very good. (It was clinicallly undectable after 3 of the 8 treatments). I'm going in for #6 tomorrow. Lymph node involvement was undetermined at diagnosis. 2 doctors thought yes, 2 doctors thought no. My onc feels that because I have had such a good response to chemo and will be having radiation after,  lymph node removal would be unnecessary. My BS feels because the cancer is TN and extremely aggressive I shouldn't take any chances. I don't want to be stupid but I don't want to deal with more than I have to. Basically it sounds like a 50/50 split to me. I'm aware already of my odds with a tumor that aggressive and large, I'm not even sure if removing lymph nodes would benefit me at this time. If they were involved and there is a recurrance somewhere it will turn up anyway, If they wern't involved it won't matter. If any of you have comments please chime in.  

Luah

Suze35: You deserve a break, great news - very happy for you! And nice to spread a little cheer around this board.

sukie10

Sorry I posted twice. LOL

Kymn

suze such great news high five for you.

sukie I would want any cancer cells out of me, just my opinion good luck

Anonymous

Suze- *GREAT NEWS!*

umater

Hi, I have not been on the list too much of late, but wanted to know what you thought of the following tx for tnbc idc, 8 wks of ac every other week and wks of taxol.  I start also with Dex, lorazepam and prochlorperazine.  I will have surgery when the chemo is complete and then radiation.  The mass is 2.7cm, dx stage 2B.  Does this sound normal?  I start my chemo on Wednesday, Jun 8.....yikes......

TiffanyF4

Ok girls I have question? When I was originally diagnosed I was given my pathology report that was er+. I immediately contacted the cancer center where I was treated because I have had so many problems at my local hospital where I was diagnosed. Anyway, after I had My bmx I was told to my surprise that I was TN! My oncologist spent the next 4mths trying to get my tissue from my biopsy at the other hospital. Finally it was sent. It was determined to be TN. it was also sent to a 3rd party and was TN. Would you take legal action? My OBGYN was very upset when I told him because he has to be able to trust the pathology lab!! What if they would have told me it was benign!!!! They never even contacted me to admit the mistake.

bak94

Suze35- I am so happy for you!!!!!!!!! You go and celebrate your clean scan! That is a great way to start your new chemo.

Sukie, I tend to be overcautious, so I would take nodes out. Had over 40 nodes taken out in 2003 with my first bout of bc, and have not had problems with lymphedema, I know that having that many nodes out is rare and even more rare not to have problems with that many nodes out, but I was glad they did it, although only 2 were found to have cancer, one was microscopic, which was the one found with the snb. I am also doing neoadjuvent chemo this time and I am sure I will have them take out some nodes, but not 40 like last time! But honestly, you need to do what you are most comfortable with. Did the docs give you any useful information to help with your decision?

Tiffany, that is horrible! I don't know what I would do, but the lab does need to make changes in order not to have that happen again, and maybe a lawsuit would make them see how serious this is.

bak94

Suze35- I am so happy for you!!!!!!!!! You go and celebrate your clean scan! That is a great way to start your new chemo.

Sukie, I tend to be overcautious, so I would take nodes out. Had over 40 nodes taken out in 2003 with my first bout of bc, and have not had problems with lymphedema, I know that having that many nodes out is rare and even more rare not to have problems with that many nodes out, but I was glad they did it, although only 2 were found to have cancer, one was microscopic, which was the one found with the snb. I am also doing neoadjuvent chemo this time and I am sure I will have them take out some nodes, but not 40 like last time! But honestly, you need to do what you are most comfortable with. Did the docs give you any useful information to help with your decision?

Tiffany, that is horrible! I don't know what I would do, but the lab does need to make changes in order not to have that happen again, and maybe a lawsuit would make them see how serious this is.

Stupidboob

Thanks for the support.......:)

Suze35 great news on your scans...................yes I am doing the AC and it has been rough.   I knew I would have side effects but geez I did not know I would get them all on week one....(I know that it can be worse) I sure hope and pray it is not.  I got the Claritin, and I have been trying to drink water like so many have suggested but it is not working so much for me and I like water.   The acid has been horrible so I have had to add an acid reducer.    Glad to hear that the Taxol has been easier on you because everything I have read about it seems as though it is HORRIBLE!!!

TifJ thanks for the info. on the steroids and the eyes...  Today thank God has been a bit better.

Now, I have a question for you all.    How do you deal with "death" issues.   Everytime I say something about not doing this, I get well you have two choices.........do it or die!!!   While this may be true being harsh does not help when you are in such a delicate situation anyways.   Then I to have a dilemma because I have had no scans at all.  The surgeons (I had two opinions) said they see no need for a scan, the oncologist said he will order if I want it but he sees no need and normally would not order the scan, because right now he feels it would be so microscopic that we would not see anything.   Maybe they figure since I have to do chemo anyway we will get anything else that might be there.   I just don't understand this whole thing.   Some get scanned like crazy and some don't get scanned.   I have talked to many people and they were never scanned either and things are still well after years with them.   I have not shared alot with you all but I am agoraphobic and medicine phobic so all of this is HARD HARD HARD for me (not that it is not with everyone) I am just explaining so you all will know a little about me and why I FEAR things so badly.
I have been thinking about moving to an Oncologist in my area but hubby wants me to stay where I am and so does my surgeon but it seems to me that AC+T are the same treatments everywhere, am I wrong?     Also, I fear with all the stuff I read that you are always going to have a reoccurance and that we are fighting a losing battle.  I know that is not positive but that is why I am asking you all how you deal with it all.   I don't want to die, but are we fighting a losing battle?  Oh I have a ton of stuff going on in my mind but I just don't know how to deal with all this crap.   Today was better thank God but tonight my tummy is doing all kinds of weird stuff and when does one know when to call the doctor.   Like I was constipated for days, then diarrhea and now tonight just gassy and painful but it was not like that until about the middle of the day and after we ate dinner (nothing gassy though).  Can we treat our tummies with OTC stuff or do we always have to call the doctor.

I guess that is enough for tonight..........thanks gang for letting me vent

Stupidboob

forgot to ask...............does the side-effects get worse with each treatment or better?  Like does it accumulate?

Titan

Suze...great news on your scan!!  Awesome!!!!

Stupid boob..oh man..I wish I could tell you that you will be fine.but I can't..however...there is a GOOD CHANCE you will be...really... no one really knows..it is so scary..I agree...mentally cancer is so hard to deal with..vent here as you need to..it really does help...everyone has their freaking out moments...but can I tell you it does get a little better after some time?  

Suze35

Stupidboob - first, we are absolutely NOT fighting a losing battle!! This can be beat, it IS beaten every day by thousands of women. The statistics are misleading - we have a DIFFERENT recurrence pattern from ER+, but it really isn't worse. TNs recur quickly if they are going to do so. After 3 years, that risk drops significantly, and after 5 years, we are back to the same risk as the general population. It is a sharp curve. For ER+, that risk always remains higher, even 20 years down the road. So it seems all doom and gloom, but it isn't as bad as you think.



I am so sorry you are having to struggle with other issues on top of the BC. Would you be willing to go in for a bag of IV fluids? I would schedule a "chair day" with every AC treatment, usually a week after, just to get fluids. It really helped. If not, try other lightly flavored things, such as diluted Gatorade. Something easy on your tummy.



Be sure to take Colace every night for the constipation - the anti-nausea drugs will bind you up. My doctor had no problem with me taking OTC stuff, and I used Immodium for diarrhea and Prevacid for heartburn. Just be sure to let them know you are on them.



Unfortunately, the effects are cumulative, not so much the nausea, but the bounce-back time gets longer. I always felt weird on AC, but I do think a lot of that was the steroids.



Can I gently suggest you try and find a therapist who is used to working with cancer patients? Mine has been invaluable in keeping me focused and grounded.



Finally, scans are a "controversial" thing. I was scanned from the start to rule out obvious Stage IV due to larger tumors and 4 nodes. I get scanned to high heaven now because I still have active nodes, and my doctor is trying to stay ahead of any progression. But statistically, scans do NOT increase survival benefit - finding it has spread early really makes no difference. Hard to believe, but that's what studies have shown. So if you aren't comfortable with scans, that is a reasonable choice. If you want one, then I think that is also reasonable. It is a personal decision.



I really feel your pain and fear, please hang in there.

Suze35

Sukie - I'm on the same fence as bk - I didn't want those nodes in me. I had 12 removed (don't have a lot), am getting nailed with radiation, and only have mild LE. I've been doing PT to stay on top of it.



Tiffany - that does suck that they got the pathology so screwed up! I know that at the very least, nasty letters would be sent to various levels of management. These are lives these people are messing with!