Calling all TNs
Comments
-
Welcome to all the new women - but ugh, it sucks that so many are joining
. I met a young woman at chemo yesterday - 34 years old. Just.not.right. Thankfully she was very early stage.I guess in the end, we can all point to stress we've had in our lives prior to diagnosis, but it is interesting that we all perceive that period prior to dx as even more stressful than normal. I know even before I found the cancer I was beginning to look for ways to improve the stress in my life. But then, I also had a very stressful period when I was pregnant with my second DS, and that was 7 years ago.
Speaking of which, my middle son, my BABY BOY is 7 years old today
. He is growing up so fast, losing that little boy look. I am so very thankful to be here today for it, and my only true hope is that I can be here next year as well. I'm taking things in one year chunks! My other hope - that I'm around to see The Avengers movie next May, lol!!
Lovelyface - I am glad that you have made up your mind, and are sure of your choice. My doctor told me the benefit was very small - roughly 3%. So if your odds of recurrence are 10%, the potential reduction in overall benefit is 0.3% - dropping you down to 9.7% - hardly worth it if you are really experiencing difficulties!! Keep us posted on how you are feeling!
Laurajane - thinking of you today, and hoping you get on a regimen that is gentle and VERY effective!
0 -
I like NotSoBusty too....great screen name
0 -
Thanks for the welcome ladies. My motto in everything I do is if you can't have fun doing it then it's not worth doing. I must figure out what fun I can find in this diagnosis. Currently making fun of myself is the only thing. I swear I'm dying my hair pink so when it starts to fall out they can say Busty must have been here! I know a positive attitude is key for me to get through this. I want to continue to work through my treatment. How many of you did this and can it done?? Also I find I am up all night consumed with anxiety about what is coming. How do you handle that?
0 -
Hey NotSoBusty,
Welcome, but I'm sorry your here. I was just diagnosed in April I'm currently in the middle of having 6 rounds of TAC and I am working. Certainly not as much as I was, I'm thankfull and lucky that my boss and the company are very understanding. I scheduled my Treatment days on Thursdays so I would be sick over the weekends and that really helps. As far as anxiety, I've asked to be put on anti-depressants and the dr also gave me a script for xanax. It has helped alot!!
Take care.
0 -
Welcome to the newbies, but sorry you are here.
Chemo is doable and I was able to keep working.
Have your dr. give you something to help you sleep and calm your anxiety. It is overwhelming, it is like everytime you open your eyes you just see a neon sign that says CANCER!
I hate cancer , but we all will get through this nightmare together!
0 -
Hi Suze, thanks so much for the information as regards percentages. My next question for my doctor would be what is my percentage for recurrence? I may have asked at some prior point, but I have since forgotten. Statistically, so far he has only told me that I am 90% cured. So, thank you so much for mentioning the percentages, the way you did. And that way I will have at least somewhat of a precise logistic in my mind. I have definitely decided that I am not going to take either the Zometa or the Anti-hormone and feeling really good about my decision. I also read a very very interesting article here on this website, under Q & A, I think, related to anti-hormone side effects as regards future cancers. I didn't like what I was reading, and I do hope to find that article again, and present to my Onc. on my next visit in November. Except for my arm pain and neuropathy, I am really feeling very good today. I have been eating 1200 calories, low fat diet for the past several days, and I feel I am very light and on top of the world, skin looks good, body is light, and I have my hair back, although short, but going to work all exposed, and feeling proud and strong. Love you all! May you all have such blessed days as well. Enjoy the GORGEOUS weather if you are in N. California today.
0 -
good afternoon ladies, welcome to all the newbies I cant beleive that was me just 7 months ago.
Notsobusty I too kept working through chemo although I would take 5 full working days off to recover and then back at it. by the end I was getting pretty tired but am now 4 weeks from my last treatment and doing much better.
I started radiation today, that was easy lol geez I wish that was all I had to do damn it. 1 down and 27 to go.
My birthday went well DH had a BBQ for me and we had fun. 42 came so darn fast.
Hope you are all having a great day
Hugs Kymn
0 -
MBJ: my hair was very curly and very blond as a child, then it got wavy. My new hair came out dark, first straight, which i was happy about..always wanted straight hair. Now its still dark and very curly... like an afro. it drives me nuts... have to put lots of gunk in hair to keep it tamed and half way decent looking. I want it to grow longer but this afro thingy on my head looks like its going to explode if i don't trim it down again. Oh well.... at least its hair again LOL
My numbness in my fingers has finally gone away to 99% but my feet still have a bit of numbness.. especially noticable in the evenings. I havent had my period sine last Aug2010. it was just after my 2 nd Chemo sitting and hasn't come back since. My Dr. said i may be in menopause...or the chemo has distroyed my ovaries. whatever its not like I miss my monthly visitor, but I'm still on alert that it could come back and then with a vengence...
Im doing so far so good.... my last mamogram was good and on Friday I have anotehr checkup with my Gyno doc. Hope everyone is doing well !! for those of you just starting on this horror trip.... Stay Positive, dont let this get you down..dont let it win. And no matter how hard it seems now.. it will get better. I almost gave up myself during my Taxotere sittings, they were the worst for me. But Im here now and can say i made it thru the woods and so can you.
Have a great week everyone
0 -
To the poster with unusually menses return: Get it checked out by your gyn. I don't know your age, but when I experienced that I was peri-menopausal. My GP sent me for a vaginal ultrasound. Turned out I had very questionable ovaries and also needed a D&C.
I had an ooph, as a result of that ultrasound finding. Glad I did...two years later I got BC. At least I don't have to worry about ovarian cancer on top of everything else.
FWIW
0 -
Welcome to all of the newbies. This thread has really been helpful for questions answered, fabulous support and a whole lot of humor.
I met with my onc yesterday and got all geared up for a clinical trial. My dilema is do I wait until next Tuesday to start the trial which is 3 random groups as usual each group does not know before hand which they will get.
Group A gets ramucirumab DP plus Capecitabine,
Group B gets IMC-18F1
Group C just Capecitabine
My dilema is that in one week my pain has increased to a script for Oxy, which I indeed needed and was terrified to take. My onc talked me into it yesterday. The pain has increased daily as well as the tumors that have spread and enlarged in just two weeks is incredible They are now obvious in my chest neck and a new one under my chin. Scary s**t! Hard to believe that 3 weeks ago I noticed one tiny pea size nodule on my scar and under my pit. Now the skin is crazy discolored so my cancer is moving quickly as of last friday mets free. I woke up last night terrified to wait until next Tuedsday for the trial when I could just get the Capecitabine only anyway. I'm contemplating foregoing the trial and begging my onc to get me started on this by its self. Do any of you have advise as to what you would do. I know 6 more days doesn't seem long but I am terrified at how quickly and painfully this is spreading.
0 -
Capecitabine is Xeloda for those of you that don't know. Which my onc said she would have put me on anyway. I'm keeping my fingers crowwed that some of you will know something more than I do about this clinical trial. Thanks to all of you. This chick here is freaking out!
0 -
Laurajane I am so sorry you are having to deal with this. I really dont know what I would do to tell you the truth, probably ltrust my doctors but with what I have read on the boards it doesnt always work out but I figure they have more knowledge on what is going on than I do. Although I defenitly would be in to the doc making him explain everything to me and what are the ramifications of waiting. Sending you hugs sorry I cant be of much help
Kymn
0 -
Laurajane: Take a deep breath... and now, another. Fear is such a powerful thing, it can make us crazy. We get good results on a scan, then notice another symptom and, bam, we're right back into the dark craziness. Try and keep your head above that - easier said than done, I know. What does your onc say - about your pain, discoloration and new lumps? Does he/she think waiting a few days makes a difference in outcome? How big are the potential benefits of a trial drug? While I like to take an active role in my health care treatment decisions, this might be one time I'd leave it up to the doc's opinion.
0 -
Lauranjane, honey, if I was in your place, I would be at the doctor's office this morning, asking him for the drug or the best one out there at this time, instead of waiting for the trial. Like you said, you are going to save yourself from having mets, so act now. And if the doctor said he could give you the drug even outside of the trial, then what good does it do to you, to be in the trial, except help others. It seems to be moving fast, so you have to act fast. I wonder what is going on with the Parp Inhibitor, because some months back, I had heard that that is the best thing out there. Have you checked on this website, what is the latest drugs they have for treatment? Iwill try to read up on it today. The ones you mention, I am not familiar with those, except Xeloda, which seems to be common these days. What a brave and strong woman you are, my hats off to you and all others like you. Tons of love and prayers from my heart to yours, my dearest. May all the blessings be upon you today as you go about dealing with this.
0 -
MBJ - How are you girl? Hope you are doing well. I miss reading your posts, which were always very special. Get in touch please when you have a moment.
0 -
Ladies, just wanted to share some good news... I finally heard back on that neck CT scan I had a couple of weeks ago. No suspicious masses. No evidence of disease. No problems with my lymph nodes. Did I say "no" enough? Yippee.
0 -
Lovelyface- the parp inhibitor is usually done at Stage 4, though I'm sure exceptions have, (or can) been made.
LJ- I agree with Luah. You are too stressed to make a rational decision at the moment (with good reason) and your onc has been handling your concerns to your satisfaction up to this point, right? (I know initially you had some problems in that area, but then you got things under control, right? Am I remembering correctly?)
I'd like to relate a little event in my life a few years back. I had just watched my oldest son drive down the driveway and onto the road by himself for the first time. Every parent knows what that feels like. I was so nervous, fearful and stressed thinking about him all alone on the road. I called my cousin who, like me, is not a deeply religious person (I believe, but am not a regular church-goer). She said something to me that I have taken to heart in a number of different ways. It is not a new saying, I'm sure others have heard/said it. But for me, it was a small epiphany. She said, "Let go and let God".
I took some comfort in that. Perhaps you will too.
0 -
LJ- I believe that you would ask 10 different persons that question and you would get tones of different answers on that subject. I believe that you should go with your gutt feeling. Deep down inside, you know what you have to do/want to do and go with that. I know this must be a hard time for you and you are in my thoughts every day. (((hugs)))
0 -
heidi I love that saying I haven't heard it before. My son started driving last year too! I am more comfortable now.
Luah- Great news. I'm so happy for you.
Kimn- You are and everyone with all of your kind words are a big help.
heidi, Lovelyface, Luah, Kimn - Thanks you guys. I did call my onc and she said with all of the research she has done this last week she really hopes I can get the A or B group that she believes it will be so much better and she can't get it for me any other way. She also said that with insurance it would take an additional 5 days anyway to get their approval for the chemo so I was only looking at one more additional day to wait to get started on the trial. They also believe that I won't get mets in one week and I would already have mets if that was the route the FC was going right now. I feel so much more at ease now knowing I don't really have a decision to make if you know what I mean? And Luah- I will try and do just that Breath! I forget to do that sometimes.
Plan for today- Blow off everything I should be doing and go to lunch with my son and BF and eat fish tacos. Ha and whats better than narcotics? Shopping of course. I think rather than pop a pill I will by a new dress! I hope you guys have a great day too.
0 -
Laurajane - I went and looked at the study your doctor is suggesting, it looks like both of the experimental agents are anti-vascular agents, which target the epithelial growth factor receptor on the cancer cells. Being Phase II, it's safety has been measured reasonably well, and now they are moving on to efficacy. It looks interesting!
In regards to waiting - the honest truth is, 6 days isn't going to make a difference. It may FEEL like it, but if you are going to respond well to treatment, 6 days won't be the make or break point. But I know how very hard that is to swallow! When I found a new node in my neck during radiation, I was freaking out that they added 3 weeks to my regimen, meaning I would have to wait another three weeks to start more chemo. But given my clear scans - like yours!!! - my doctors were honest and said 3 weeks would not change my outcome.
In your shoes, and please note this is just me and I'm not a doctor!, as hard as it is, I would wait for the study. The opportunity to add in a drug that targets the tumors in a new and novel way is compelling. And your chance of getting that would be 66%.
I can tell you that getting started on Xeloda is not as easy as running by the pharmacy. Most pharmacies do not stock the pills as they are very expensive. I had my local one order them 2 weeks before I started to make sure they were there. And my insurance company only let me do that one time - I now have to mail order them from a special pharmacy. So it could be several days to start the Xeloda as well. Maybe look into this for your peace of mind?
In regards to Xeloda, I am on that (with Avastin) and the side effects so far have been very tolerable. You won't lose your hair, or feel very sick. I'm somewhat nauseas but don't need meds for it, have headaches (less common) and am pretty fatigued. My hands and feet are fine so far, but you can develop hand/foot syndrome, so stay on top of that. The dose can be adjusted as needed. And it is nice to just pop the pills.
I wish you luck in your decision - I know it is scary, but take a deep breath, and think about what is best in the long term, whatever that decision may be.
0 -
LJ - lol, we cross posted. I'm glad to hear you have made a decision. Keep us posted!
0 -
Wow Suze, You put into a more clear perspective what my onc was trying to explain to me today. Thank-you so much! Want to meet for lunch?
0 -
LJ - I'm glad I could offer some clarity. This stuff gets so confusing! I'd jump on that study myself, but I'm already doing Avastin which has a similar action on the cancer.
Are you doing the study in NYC? I'm not there all the time, but I can make arrangements to be there when you are so we can get together
. DH is in Japan through 8/14, then back in the city, so maybe on your second round I can come over with him. It would be fun!!0 -
Suze, Luah & Heidi - What wonderful posts. Heidi, thanks for reminding us of the wisdom, as you can see from my post, how quickly I forget to let go, and let God. I get into a complete peaceful mode when I hear somethings like that and I need to keep on reminding myself not to get into that other mode, which is, as if everything is in my control, which it is not. You can see from my post, I got into that mode pretty quickly when I read LJ's post. I felt like I had to do something right now.
Suze - thanks so much for your feedback and info. on Xeloda. And Luah, thank you, you have a pretty wise head on your shoulders.
Laurajane - I am so glad now you don't have to make a decision. So far, things look pretty good for you, I think you will be just fine, girl. Hang in there and yes, go enjoy those fish tacos and buy yourself an outrageously gorgeous outfit.
0 -
Babs - I forgot to say welcome back!! I'm so glad you had a great vacation
. I'm getting my ocean fix tomorrow, we are going to take the kids to the beach.Lovelyface - what a beautiful sari!! Your pictures are just so lovely. It is hard sometimes to let go of that "fix it NOW" feeling, isn't it? I really struggled during radiation having to wait for more chemo. I am like you normally - but I'm trying to meditate to help calm myself, it isn't always easy.
Luah - great news on the neck CT! It sucks sometimes that just when we think "all clear," another symptom pops up that drives us crazy. I'm learning to let some of it go - I could have had a bone scan for the pain in my shoulder and joints, but I decided to just wait until October. If it is cancer, well, it will get worse and I'll know. And you know, the shoulder got better, lol. And the joint pain is bilateral, so probably not cancer. Lesson learned, but not easy!!
0 -
LauraJane, Sounds like you have thought through your decision and worked out a sensible strategy. Do you ever post on the TNBC website? There are some smart and experienced women, and men, on that forum. http://forum.tnbcfoundation.org/tnbc-talk_forum1.html They might have some additional information.
Meanwhile, enjoy the tacos.
Susan
0 -
Just popping in to say that I am thinking of everyone!
Great news Luah!
LauraJane-so happy you have made a decision! Get ready to kick some cancer a$$.
Suze, you always have such good advice and research! It is always appreciated!
Also, a hello to Lovelyface , Heiditoo, Kymm and everyone else!
Also, a warm welcome to the newbies! We all support each other and it is a wonderful feeling!
I am still enjoying my chemo break, worked 8 hours yesterday at my new station! Tired today, but it is a good type of tired, like I accomplished something! I have 1 week and 2 days before I start abraxane. I am a little nervous, as I had a reaction to taxol 8 years ago, so I hope this one is better! I have actually been feeling pretty normal and have been able to put cancer at the back of my mind. The only problem is my clients always ask me about it and I have to talk about it while I am at work . It is hard, but they care and just want to know what is going on, plus they are so loving and supportive so I don't really mind sharing with them, but it is draining. Once I see everyone one for the first time it will get easier.
0 -
LJ...lol that was the only thing that cheered me up was retail therapy go for it my DH never dared say a thing except thats a nice outfit lol
Oh I am so jelous of you girls meeting up in NYC for lunch I have always wanted to visit NY ...one day its on my bucket list
0 -
Hey Gang,
Hope everyone is doing ok, and dealing with things that come our way. I started Taxol Thursday and boy did I pay HELL this weekend. I had so much pain, that I could not sit, lay, stand and only slept for a couple hours from Friday Night thru Sunday and even missed going with my furbabies on their Sunday ride........I HATED THAT!!! My fingers are numb and my big toes. Of course my medical team does not really believe me, as they think it is to soon. Well Hells Bells I know if my freaking finger are numb, but had the same thing happen with the nurse with my mouth sores and the AC. I have not talked to the doctor yet, but how do you all get your docs to change protocol? Mine seems to be a stickler and don't want to budge. I have thought about changing to a new one, but I understand that can sometimes be difficult to do, when you are in the middle. I only have 3 more treatments. I will look for a new one after that if he don't change. The nurses tell me different things on the same thing and this causes more confusion. GOOD NEWS!!! The spot I found, the surgeon said it was some kind of skin flap (I can't remember what he called it). I love that man, and it was his office that recommended this oncologist so I am trying to figure out if we are just not suitable for one another, or if I just expect to much. When I hear you all talk about how your doctors lowered doses, changed it to weekly or every 3 weeks and then mine won't it makes me feel like he don't care. Input would be appreciated if NICELY DONE........:) I am so tired of being told to take a pill to deal with my emotions and pain. If things can be done differently then WHY NOT do it instead of loading me up on even more DRUGS!!!........I take my xanax when needed and what pain meds I do need but I don't want to be in another world. I just want my feelings taken into consideration and not just be told I am anxious, over reacting and etc. Yeah, I am emotional, I have cancer, the POISON you put into me in hopes to save me are killing me. They are draining me of everything, my periods have stopped but I still have all the crap that comes with getting them, only no relief from actually getting a period. HMMMMM can't understand why any of us would be a little on the anxious side. I know I am fussing to much, but ladies all kidding aside, how do you get your doctors to do things?0 -
LJ-i deleted my previous post when I said I felt great because I am now feeling guility when I know others are still going through TX. It was out of respect.
So from now on I will only post more helpful and encouraging posts. I am probably reading more into my post than I should but H%LL I am emotional sometimes.
Tumors growing that fast! Urgh!?*&^%$ Recommendation I would move over to the stage 4 forum and see what other ladies are doing and which ones are having the best progress. Do you know if your tumor is true basal-like? I know it's scary to know, but at this point I am almost sure your doctors are checking or have already checked. Compassion PRAP is open until November I read, but someone double check me.
0
