If you are not Stage IV but have questions, you may post here
Comments
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Hi Steph, did you have radiation and was it on the side of the fractures? I ask because our ribs can be weakend by the radiation and a not so heavy knock can cause a fracture we are not really aware of. I doubt very much that it is more than that as the CT and bone scan would have shown if it were mets.
If you are not on a bone strengthener try adding extra Vit C, Vit D and magnesium to you daily regime. I have been on these for six years now along with an AI, I've had two DEXA scans in that time and my density has improved. You may find over time yours will as well.
Good luck!
Love n hugs. Chrissy
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thank you so much, that is helpful!
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Thank you chrissyb. We have a month-long trip planned for October and bought our flights so I am trying to stay positive.0 -
Hi everyone, I am writing an article for an internal newsletter at my job. The topic will be metastatic breast cancer awareness. Would anyone be willing to let me interview her about her experience? Last year I did an article but it just focused on facts and statistics. It was very well-received except a cancer survivor was offended and terrified by the fact that I included one line about how even with early detection and treatment 30% of women will develop metastatic cancer. I really want to bring attention to metastatic breast cancer, especially since there are options for our employees to donate specifically to charities that raise money for metastatic breast cancer. Most just donate to Komen because it's all they know. So I was thinking this year I may be able to reach more people and put a more human side to the article if I did an interview with someone with metastatic breast cancer. It may also be less disconcerting for them to see that many women continue to trudge on even after the diagnosis. Please let me know if you are interested. My mother has stage IV BC but she refuses to even tell some of her closest friends and family about it so she will not let me write about her.The newsletter will not be distributed beyond my job. Because of the nature of my job (we do some work that requires securityclearances and background checks) I cannot share the entire newsletter with you when it is complete because it will include some work-related stuff I am not allowed to distribute. However, I will let you see the article in it's entirety before it is published. I can also ask management if it's ok not to use your full name.
Thank you.
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Almasi I'm happy to answer any questions for you. My QOL at the monent is pretty near mormal as I am consideted NED. If that's what you need let me know.
Bringing awareness to metastatic BC is a good thing.........although at that stage it does eventually kill, you can also show that for some, depending where the mets are and or how extensive they are, it is still possible to live a pretty reasonable way of life.
Good luck with it!
Love n hugs. Chrissy
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Hi Ladies,
My alt is 124 and ast is 64. Should I be concerned?
Thank you
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Hi, I am getting confused about my diagnosis since joining the forum. My cancer has spread from my breast to my lymph nodes under my arms, and also in between my sternum (chest bone / wall). No other areas are infected by cancer yet. My doctor told me that strictly speaking, my cancer is in stage IV. However, the bco website listed it as stage IIIc. The reason why I'm asking is because I want to have a better idea of the odds of my survival. Can anyone help me out please?
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Hi Michelle, your liver enzymes are raised but not by too much right now. If I were you I would be keeping an eye on the levels, which I'm sure your doc will do anyway, just to make sure that the rise is not continuing in an upward manner. Here's hoping that the rise is just a hiccup caused by something other than BC.
Hi 27heart, some docs call travel to the chest wall/nodes stage IV and others IIIC as you have stated but it really doesn't matter what you call it, with ongoing treatment and careful management, your odds of long term survival are very good as it is not effecting your organ function in any way. My suggestion would be to have a conversation with your doc and get him/her to explain to you what they have in mind for your treatment plan and why. Hopefully this will give you a better idea of your long term prognosis.
Love n hugs to both of you. Chrissy
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Thank you ChrissyB!
I am having my labs drawn again tomorrow. Next week I'm scheduled for a MRI on my pancreas. So between my onc and gastro hopefully we can get to the bottom of this.
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I'd just like to offer up my most heartfelt best wishes. Yes, I know what it's like to have a doctor walk into the room and say, "You've got cancer." To hear you're stage iv, I just can't imagine.
I only know one woman, through my breast cancer support group who is stage iv. She's currently cancer-free. : )
Big hugs
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Michelle I'm keeping everything crossed that the labs are good and your MRI shows just the norm. Good to hear that your docs are checking thoroughly.
Amy, being told you have cancer is really difficult but being told you are stage IV is life changing and not always on a good way. As a lifer, I learned to make the best of each and every day, enjoying life to the fullest at every oportunity and my wish for all who recieve the dx of stage IV is that they too can find joy as well as sadness. Blessings to you.
Love n hugs. Chrissy
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I am not sure how the staging works, but when they found my breast cancer stage III, they decided to do a PET scan becaus I had so many satellite tumors. They then found very high sugar uptake in three different lymph nodes systems not including the axillary nodes. The laparoscopic surgeon who removed biopsies from the Mesenteric lymph node said it did not look like metastatic tissue, but of course only the path reports can say for sure. He is still concerned about a separate lymphoma cancer unrelated to the the breast cancer. Fun huh! I am wondering what that will mean for my prognosis. Stage IV, terminal or what? They seem reluctant to to treat the breast cancer till they figure it out.
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Hi Tallnterrific.......if your docs are looking at the possibility of a lymphatic cancer as opposed to metastatic BC then your staging would still be classified as stage III with another cancer not stage IV. Should those nodes prove to be BC and depending where they are, then your staging would I think still be classified as stage III but IIIc.
As to you question re stage IV being terminal.......the answer is yes, but it is still possible to live a long productive life depending on where the mets are and of course what specific type of BC you have. The idea with treatment as stage IV is not as a cure but as a control of the cancer's progression while giving us the best possible quality of life. For some this can last a long time and for others a short time.
Hope this has been helpful to you and if you have more questions please don't hesitate to ask.
Love n hugs. Chrissy
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Hi everyone, I cant help but be surprised at the amount of ladies that get stage 1V after starting out with Stage 1 and a good prognosis. I see one lady had stage one , grade one and you cant get much better than that. Best wishes to everyone whatever stage you are. There are no guarantees for any of us!!! Love Muriel
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Thanks for your thoughts Muriel. I agree with you, there is no rhyme or reason as to who or what stage will progress to stage IV and that is why we need a cure.
Much love n hugs. Chrissy
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Chrissyb, thanks for the information. I just got wonderful news that the mesenteric lymph node was not cancer but was a chronic infection of some sort. I am so amazingly grateful to have only stage III breast cancer! I was told earlier this week by an oncologist that if that lymph node was cancerous it was incurable. It was quite a shock. I had been getting a lot of very negative opinions about the possibility of a false positive given the SUV level of over 10 and the numerous areas that lit up. It was becoming hard to maintain a positive attitude. But now all is so much better.0
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TallnTerrific I'm so happy for you!! That is good news indeed and I can hear it in your words that you are pretty happy with the results as well.
Hope you stay right where you are for a very long time.
Love n hugs. Chrissy
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Hi all,
My brother was diagnosed as Stage IV in March. His cancer is confined to a few bone lesions apart from the large mass in the breast, and he is starting chemo again tomorrow. Any word on how effective weekly Gemzar is for Stage IV? He had weekly Taxol at first but he had to stop due to the side effects that were exacerbating other medical conditions like diabetes and colitis. I read that Gemzar can be easier than Taxol, but I wanted to see if anyone has had experience with it. Thank you.
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Chrissy...have you stopped accepting private messages
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Hi Debic, no sorry, some how I managed to touch the block button and didnt realize until this post.......all fixed now.
Hi Livingisloving, with each of the chemos and other treatment we all can react differently. ......what is easy for one may not be for the next person and what caused incredible side effects for one may cause none or very mild in another. Gemzar like all treatments for stage IV are aimed at controlling the cancer not curing as there is no cure for stage IV. I have known a lot of people treated with Gemzar and it has given them a good amount of time before another progression and a change of treatment is required. I do hope your brother both tolerates and reacts well to his new treatment.
Love n hugs to you both. Chrissy
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I don't have a question at this time, but just wanted to thank Chrissy and other State IV women for taking time to help the rest of us understand what we are facing. It's really a big help to have someone who understands how you feel hold your hand and walk you through....thanks again!
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4love you and everyone else is very welcome. We do what we do because we have all been at the very beginning and do understand. We didn't like it for ourselves so try to ease others.
Love n hugs. Chrissy
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question about liver numbers being elevated. My AST is 42 and ALT is 56, these are up from early October, but are still only slightly elevated. MO's nurse called yesterday and said doctor initially said need to do cat scan, then changed his mind and said we could repeat labs in a month. DH wants me to do scan so I'm gonna do it.
So, my question is this.....are these slight elevations indicative of mets? I would think it would be way higher.
Thanks for reading.
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If you go to rxlist.com, you can look up any test and see what out of range levels mean and what the test is used for. It never hurts to get a liver scan if someone else is paying for it. Your levels are not that high. What about your ALP score and bilirubin? High levels don't necessarily mean a liver problem, sometimes it bones or gallbladder etc. Complete metabolic for liver should be done when fasting.... Right now it could be anything, it could be fatty liver for example. Best to do some research since you have the results. Hope that helps.
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well I don't drink and the elevation has gone up the last 2 times I was tested. Trying not to worry, but damned it's hard.
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I have a question . On the CT scan they found a 6mm nodule in my lung. Doc said too small to worry about now in terms of finding out what exactly it is as I was just about to start chemo. She said in a few months when I'm done with chemo if it's gone then it was cancer. If it isn't then it's not. So if it's gone after chemo, am I stage IV? Thanks!
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Hi Artista, as stage IV means the cancer has moved from the breast to other organs if your nodule is gone after chemo I would be thinking you are definitely stage IV. To be certain I would check with your doc and ask what that would mean for you in regards to ongoing treatment etc.
Keeping my fingers crossed tgat you have a very good outcome from your treatment.
Love n hugs. Chrissy
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Isn't it irresponsible to start with the harshest treat first,then?
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Thank you Chrissy. That's what I figured.
Tomboy- My MO says she's throwing the book at my seemingly stage III cancer with the AC/Taxotere regimen. I am not finding anyone who is having Taxotere instead of Taxol with the AC regimen. I asked for the strongest which is the harshest because it feels like if not actually does throw the book at it to help prevent recurrence. I'll also be on hormone suppression med afterwards if I'm confirmed stage III and will do the 10 years they now recommend.
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I was just concerned, because if they find out after the fact that you are indeed stage 4, then you will have to live with the side effects of the harshest treatment for the rest of your life, without the chemo actually being able to completely eradicate all cancer cells from your body. It's just that I see many stage 4 women start with hormonal therapies, and also, many of them don't even have to do surgery, because the cancer is already out of the gate , so to speak. Please understand, I am not trying to scare you, I am trying to just understand, and to save you from a very aggressive treatment that actually would not save you from being stage IV. Please try to read around here, and find out. Like exbronxgirl, they thought she was stage 3, and she went in for tests completely unrelated, and they found she had a bone met. So her chemo was now off the table. Being that you are estrogen receptor positive, you could be starting with hormonal therapy, which may allow the nodule to start shrinking also, which would be obvious on a repeat scan at a later date. I'm just trying to save you the tribulation of side effects from chemo. Is it possible for you to get a second opinion? Taxol and Taxotere are both the same active ingredient, it is just the carrier fluid is different, one is a solvent, and I think the other is albumin (egg), and there is much less chance of a reaction than the one with solvent. Can you get a second scan, as it has been some time since you first were diagnosed, did they do the scans then, or just recently? Please don't get my intention wrong, it's just that I am now worried for you, and would like to see you get the proper treatment for your stage. And I am worried that they haven't staged you properly, and it would be irresponsible of them to treat you for a different stage. I hope everything works out for you, and if you do proceed with chemo, that you don't hate me for saying this! So now, I will wish you very well indeed, and hope to see you around as you proceed! Love from kath
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