If you are not Stage IV but have questions, you may post here

Anonymous · April 2013

OMG, Stormy...what a nightmare! Great advice but horrid you had to learn that wisdom at all.

WannaCruiz, have them add that, before they do anything not agreed upon, they will come out and discuss it with you. And thoroughly read all the consent forms. I know that in the reconstruction threads, possible changes in the procedure were added by the surgeon if s/he got into surgery and found something unexpected...in many cases, the stated possible change was the very thing the patient had clearly stated she did not want. You might even discuss having your DD give you her medical power of attorney so that there is no question as to your ability to make a decision for her while she is under.

I am constantly amazed at the number of huge decisions we have to make so quickly while still trying to process a life altering event of this magnitude. Gah!!

WannaCruize · April 2013

OMG Stormy, that is terrible. Hopefully you haven't (won't) develop lymphedema. Also, great idea about the medical POA, Ysa. You would think since she's my daughter, and single, I wouldn't need one, but since she's an adult, it probably would be wise, just in case. I've talked to DD about the lymph node issue and why we are asking for no node removal, because I'm the researcher in the family :-). But again, if they have cancer residue in them, why would't we remove them, since she is having her breasts removed for the same reason. GAH, the questions keep circuling around and around... Effin' cancer...

macyhen111 · April 2013

Aye To Wayne the pain. I feel sorry for his poor wife. What a absolute waste of space!!!

Wannacruiz, God Bless you and your dd.

Chickadee · April 2013

Wannacruize, just to add I was stage IV from diagnosis and have had no surgery. It was my option. No nodes removed. Recently one in my neck became malignant but onc said let the chemo take care of it and it did.

Anonymous · April 2013

To michellej19 - apologies if I read that wrong - You are not paying attention. So be it.

Regardless, the best to and for you. Overall, this chat service is an excellent vehicle to share thoughts and insight.

Warmest Regards,

Wayne in SRQ, FL

Anonymous · April 2013

BTW, for pain management - yes there is another thread! - is anyone familiar with or is using Lazanda?

Wayne

C-squared · April 2013

ALL~ PLEASE JUST IGNORE HIM!!! How many times has he said "goodbye"? And we just keep feeding him. The only way to make him GO AWAY is to IGNORE HIM!!!

WannaCruize · April 2013

Thanks Chickadee, I hadn't really internalized the fact that all the Stage IV women who didn't elect MX also were 'node-keepers', so I guess it's not quite as radical as I'm making it out to be.

We have a pre-op appointment with the nurses, etc. to do paperwork, etc. the week before the surgery, so I'll pay attention to the consent forms to see if we want to 'change' anything. Started haunting the surgery threads for hints and advice, and we're going to Nordstrom to look at their mastectomy camisoles next week. I downloaded an Advanced Directive/Medical POA, which freaked me out a little, so have to bring that issue up to her, as I doubt she's thought of it. I really appreciate all the ladies on here being so generous with their time and advice.

melmcbee · April 2013

Wannacruize, healing hugs and prayers going to you and your DD.

Anonymous · April 2013

Hello Ms. C-Squared . . . you do have the fighting spirit. :-)

A good evening to you.

msShelly · April 2013

hello, i posted before about clearing of my throat that i have been doing for several weeks now (or i noticed for several weeks now). It is best described as the symtoms of "post nasal drip." Maybe this is all i have, but i have had no scans other than a chest x-ray and I guess i worry that how do you truly know if there is nothing there until you look to see that there is nothing there. I dont really understand why all women with breast cancer are not given baseline scans and scans just to check.

Well anyway, Im still having clearing of my throat and now I have phlegm. Just twice over the past week. I had developed a slight cold last week which happened after an allergy attack. I thought the cold was pretty much over but today I had a phlegm that i coughed up. I have always had awful allergies, but gosh every thing these days seems to scream breast cancer. I don't really every cough actually, just clear my throat and now phlegm. In the past, I have been diagnosed with a poor etruscan tube and I have a thyroid goiter. I have also had several surgeries within the past year and i am wondering if maybe it has something to do with that. I am including a colonoscopy in my surgeries (had 3 in past 8 months)

Anyway, I am wondering what are the "typical" symptoms of lung mets? i know they are probably very varied, but how would they start? Also, is phlegm considered a good thing because it is a productive or could this still be a met starting?

Also, I was basically just diagnosed, only a survivor for a few months and I am wondering if all of this could happen this quickly? I had a chest xray 3 months ago that was clear and honestly thought i could have run a marathon before being diagnosed. i had never felt better. It is not something i feel i could talk to my doctor about because i dont want to be running to him every time i sneeze. i guess i am just wondering if it is truly possible this could be starting of mets with no lymph nodes or lymphovascular invasion and a pretty small tumor???? thanks. sorry if this is repetitive.

jgbartlett · April 2013

I feel so sad seeing the posts that tell us that our stage iv friends have become angels. The latest was Elisha82 - she was so young. I'd like to pay my respects, I read her blog and once diagnosed stage iv her cancer was very aggressive. It made me realise any of us could be diagnosed stage iv and gone very quickly. My condolences to her family & the families of all we have lost to this horrible disease.

macyhen111 · April 2013

RIP Elisha, God Bless her Family especially her young son and husband.

Ween · April 2013

Hi: Does anyone know if a side effect of Xeloda can be ascites? My sister started on Xeloda for liver mets and immediately started with the ascites. I thought that maybe the Xeloda is killing the cancer, but along with killing the cancer it is killing the albumin enzyme that keeps the liver working properly. We are hoping that this is the case and that she hasn't gone into full liver failure. She's also had orange urine, nose bleeds and rapid weight loss.

Thank you in advance to all you kind and brave ladies. That is so nice of you to create this thread for those of us that are not Stage IV.

She · April 2013

Dear Wayne: Your "chatting" on this thread almost turned me away and I need information. Do you hear what I'm saying? I need information and your pissing and moaning here almost kept me from posting. I've been here a very long time and frankly I don't suffer people like you who have nothing positive to add. The only reason I'm addressing you directly is so you understand the effect you may be having on others who also need information. Don't reply to me, don't apologize, either change the way you communicate or get out. I need information that is important to MY LIFE and well being just like the other women who come to this thread to ask questions. Enuf said.

chrissyb · April 2013

Hi Ween, I've not taken Xeloda myself but in the research I have done, I cannot find ascites as a side effect but I have found that the bilireubin levels can rise considerably. Taking into account that she is also experiencing rapid weight loss, nose bleeds and orange urine I think it would be wise to allert her onc as to her reaction to the drug and how she is feeling.

Love n hugs. Chrissy

She · April 2013

Good afternoon ladies, I'm looking for research info on chest wall recurrence. Does anyone have anecdotal evidence regarding the effectiveness of chemo (DC) on Er/Pr + CWR? I'm aware that it is very effective on Er/Pr - but there is very little out there that indicates chemo has a better effect than aromatase inhibitors for +CWR. The fact that my Onc was not aware that hormone status is known to flip from + to - with CWR and I had to ask to have mine rechecked is concerning. Don't you love it when you ask for scientific evidence and the response is "it's your choice to do chemo or not". So I come here for the info I know I need to make the best decision for my tx because after 3 primaries and a CWR I have no doubt that our response to tx is completely individual and often a crap shoot..... And more importantly, the women here collectively know and have experienced far more that any individual doctor could.

I also appreciate this thread and the time you good women of IV take from your own precious time to answer questions.

Anonymous · April 2013

You, too, Ms. She, have a fighting spirit. No plan to apologize for what? Turned you away? The truth hurts, maybe? Turned others away? If they are that weak, then fly away. Need information? Read on.

I am living through what some might see as a hellish situation for/with a Stage IV, MBC patient, my wife of 50 years. Disagnosed in '95, , whether you like my position or not, chemo is a slash 'n burn process. For MBC patients, it provides zero positive contribution to life. For those who may read this, know that high-level research says that targeted chemo does nothing. Read that again. And, sadly, targeted chemo will do nothing. It is necessary to kill the STEM cell first.

You have all rights to be annoyed with me. So be it. BTW, wonder why you write now since I sent a "final" post ago. Yours prompted a reply. Sorry. Say what you wish.

If ongoing chemo does zero for MBC patients, why are so many readers here apparently annoyed with the notion of speaking with their oncologists. Annoyed with me at bringing this important fact to the front of the table. Too many out there see their oncologist as God. Oncologists are not God.

To be clear, this is for MBC patients only, Why stop chemo? 'Cause of the hell it does to you. Your body. Neuropathy. The mind. And you wish to tick me off, be short of slanderous by not accepting the truth?

Ms. C-Squared will tell you to ignore me. Fine. She is not informed.She has a fighting spirit. but appears to be far from informed. And she and too many others wish to stay on the slippery slope of misinformation.

If one (1), only one person simply talks with her oncologist, I made a point and an unnamed, unidentified friend. AND she will live a more fruitful life.

So be annoyed at me, Ms. She. BTW, I do hope that you do not join the rudeness of some who read/write on the forum.

Remember, please, Ms. She. Chemo is destructive.

Warm Regards to You (regardless of what you think of me),

Wayne

PS: Thinking of adding a new topic ~ "Chemo - Slash 'n Burn or How To Make The Change Box Go Clickety-Clack" What do you think? Good topic?

Anonymous · April 2013

Ms. She: your words p----- and moaning are crude. Read my non-moan post, if you will. It contains information that will be valuable . . . to some, not all, to some. I may not meet your question, all from me is from experience.

Bye, Ms. She.

chrissyb · April 2013

Wayne, I have asked you'd nicely to repost your comments in the Caregivers forum as they really do not belong here. I will ask once again........please take your comments to the appropriate forum. Thank you.

Anonymous · April 2013

(((Chrissy)))...big sigh.

C-squared · April 2013

Again ladies I think the best approach is to IGNORE this intruder. If he doesn't have anything to respond to.., he won't. We truly need to stop feeding the wolf and, I believe, he will eventually go away.

I think we ALL know that Wayne is a VERY troubled man who is truly conflicted in his experience. For him to continue to intrude upon this board after all of the requests that have been made for him to seek support elsewhere, reflects a delusional man with a borderline personality disorder. He is narcissistic, arrogant, disrespectful, and ignorant. There is really nothing more that we can do to help him. He truly needs the help of a professional and it is sad that he does not recognize that need.

She, I hope you will receive the answers that you deserve from those who know. I hope we have not allowed 'him" to interfere with women who truly care for and support one another with experience(s) and knowledge.

Hang in there!

Linda-n3 · April 2013

C-squared is right about ignoring those who are intrusive and rude. I have used the blocking function for the first time ever here on these boards, and it is QUITE effective! I no longer see abusive, rude, ignorant, offensive, etc. posts from a specific individual. So I do not feel any need to respond to anyone I have blocked. I can tell by responses that the individual is still antagonizing people here so that they feel a need to respond, but I don't because I have no idea what those posts say. Kind of like not answering the phone when it rings and I know who is on the other line, LOL!

She · April 2013

Thanks C-squared and Linda. My first "block" in almost 8 years. Loved the phone analogy Linda. Apologies, I know better than to feed the trolls.

Anonymous · April 2013

Good Morning Crissyb ~ Sure. I do hope that one(1) got the msg for MBC-only, re sans chemo.

Wayne

Anonymous · April 2013

BTW, Ms. Crissyb, your removal of two polite and informative msgs did not surprise me.

macyhen111 · April 2013

I am so happy for the ignore button. So I can read my sister's comments without having to weed out the offensive (to me) post from someone who will never understand what we are going through. A little compassion goes a long way. Instead of trying to make others feel bad, do something positive in your own life, that will possibly help you or someone else. All I can say is God is Good, and with or without cancer I am glad that he has made me the person I am.

WannaCruize · April 2013

I've had to report one of 'his' posts before, and the moderators agreed and deleted the posts. Other than spam, you can report posts that meet the following criteria:

*threatening, abusive, or hateful comments

I feel many of his recent posts are abusive to the Stage IV women who have repeated asked him to stop posting here. If any of you feel the same, perhaps if more people reported his posts, the moderators would monitor him a bit more closely, since he seems to be unable to self-moderate.

C-squared · April 2013

WannaCruize~ I believe he is now being monitored since a couple of his posts have actually been deleted by "the mods". I, too, am being monitored by the mods because of my attempt(s) to get him to stop posting to a group of women who he continued to offend, insult, and hurt.

I do not feel that anything I said was offensive to anyone on this board, yet I have been reprimanded for my attempts to bring peace to those of us who seek it (including me). I am sorry that I can no longer participate in a group effort to subdue someone who cannot contain himself.

I wish you peace and I truly believe that "he" will go away in time. I'm just so sorry that I have to "go away" as well.

All the best to you ladies!

Moderators · April 2013

This is, and continues to be, such a helpful and supportive thread, and we're sorry to see it disrupted. If you don't want to see another member's posts, we recommend that you use the very effective Block Member function. If for some reason you want to continue to read posts you don't agree with, rather than discussing them, use the Report function or send a PM to let us know about posts that are in violation of the Breastcancer.org Community Rules.

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If you are not Stage IV but have questions, you may post here

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