If you are not Stage IV but have questions, you may post here
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Michelle-
I have chemo induced Cardiomyopathy (6 rounds of A/C in 2001) and my ejection fraction was down to 10% when I was first dx'd in 2005. I was put on heart meds including the coreg u mentioned and had a defibrillator implanted. My ejection fraction is now 35%. I would be happy to answer any questions you might have.
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Hi, I think my ejection fraction is in the 60s. What does it feel like to be at 35? I have moderate aortic stenosis. Up for radiation soon. Thx
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Marijen -
an ejection fraction of 60, would be in the normal range. Now,I actually feel pretty good, just tire very easy and I can get short of breath. I was 46 when I was first dx'd with the heart problem and I am on SSDI. My daily life revolves around rest periods so I can live actively. I also have the aortic stenosis.
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Um, no Artista, that page is not a government page. That is a lawyer page, made to look like a Social Security page, and they didn't even do a very good job of it. Of course, a lawyer will try and convince you that you need them, but please be wary of that sight. Any legitimate government site will end in dot gov , and I am pretty sure when I looked into it last year, yes, they do give it to you, when you are stage 4, when you apply. They even expedite the process as much as they can. Those lawyers will lie and tell you that you can't do this by yourself, and will even hold up the process, because they get a good part of the back-pay, when your claim is accepted. I am gonna go and try to find that page, and make a fresh link. It's waaaaay past my bed-time, so this may take a little while.
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This one will tell you more about the process: https://www.ssa.gov/disability/Documents/SSA-1170-KIT.pdf
be right back with the other
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This is a list of conditions (cancer) that they will consider. They do appear as they have gotten more strict, a brief read-through sounds as if they really don't want to give ssdi to anyone. https://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm
That's the disability evaluation sheet. Then, there is also this, if you look at 13.10. where it talks about the breast and also lymphedema. https://www.ssa.gov/disability/professionals/bluebook/13.00-NeoplasticDiseases-Malignant-Adult.htm#13_10
Artista, sorry if I seemed harsh, I know you were trying to do a good thing. I guess I am just not too trusting of lawyers.
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Call a Social Security office and not a lawyer. They will tell you that Metastatic Breast Cancer diagnosis, confirmed by a doctor, is an automatic approval. It has more to do with their outdated stats which say we have 2 years to live, rather than what you are capable of doing. There are about 60 automatic approval diagnoses that SSDI approves automatically and on the fast-track system. Don't believe a lawyer about these things, they want you to go through them so they get some of your $$!
Stage IV, you can apply online/over the phone and it takes about 20 minutes. There is no hearing, no meeting with a judge.
Artista, you maybe had a difference experience if you have applied and are not Stage IV. Unfortunately, Stage III and below have to go through the regular system, which does question every single thing you are able to do each day (take care of yourself, sit in a chair, etc.) That is just not the case for Stage IV and if you'd like to more, call your local SS office directly. They are actually very helpful and nice people and will explain the process to you.
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Lawyer page? Where are you getting that?? It' people that are going through the process with some former examiners who give advice. No lawyers. Just regular people who know the ropes well. They helped me a lot getting on SSDI with their knowledge. Best site around that answers questions. No, you do not need to donate. And not a one is a lawyer. Wow.
Oh I see. There is one advertiser on the page. Again, this is not a lawyer. Unfortunately the site is down right now but check back and you'll see what it really is, free of charge.
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I will look at it when it's up and running again, I am sure the people there who have done it are very helpful. i was really struck by how different and tougher the SS pages are now than they were last year when I looked! It may be because there are better treatment options than there used to be, and that's a good thing. I just don't understand why they would make a woman who is facing her own mortality, work when she might just want to spend her remaining time fulfilling herself in anyway she would like. Thanks Artsee.
I did notice tho, that if you have more than ten nodes, like me, (25 out of 30), it also said you qualify. No one told me this at the beginning, when I probably could have collected, I was on unemployment at the time, I think that should count too, but don't know if it did. I had to stop unemployment, because I was unable to work, or even really look for work, and I could have used it. I am pretty much still unemployable. so I will look forward to asking questions on that sight!
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Once you are on SSDI, it becomes up to them to prove you are able to work, not that you cannot work like it is when you apply. If you are below 50, can you do any job in the national economy. If you are over, can you do your old type of job. They send out either a short form for you to check off how you are doing typically for those who are probably not going to improve or the long form which is similar to what you fill out at initial app and they'll also ask for med records to back up what you are stating.
I've studied that forum where you will find the most help in the active q & a both before I was approved (for something else) and for when it's review time.
That's why I say go for the state disability first if your state has it as all it is is a sig of your doctor basically. Easy. In CA that's for up to a year. Not all SSDI cases get approved that quickly so just in case, start the state one which will have you receiving $ in a month. My friend who was in active heart failure did this while she waited for SSDI. She was on SD for 3 months before SSDI got approved then her SD stopped.
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The board is back up...
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Don't know if this is the right place to post but there have been some questions/comments lately about HIPEC and bowel blockages. There are a lot of discussions about these procedures at colonclub.com (discussion forum). Maybe you can get some information here. Good luck and God bless.
Banjokatt
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Thank you for the links and discussion. It cleared some things up for me. Hopefully I won't have to worry too much about it, but I'm going to push for a scan after Christmas due to a few symptoms, so it's good to have the info at my fingertips
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I've seen a first post (from Griselda13) buried in a thread on the Caregiver's forum. She says her partner has metastatic BC, and from what she says, needs support/advice asap. Here's the text of her post:
"I too am the partner of a Metastatic patient. My partner (together 30 years, married 2) was diagnosed in October. She is is the second round of chemo with Abraxane. Julie-MN, I hear you: mad, scared, overwhelmed. We are having a particularly difficult time because she is so weak. I can't believe the people on here talking about travel, work, exercise, etc. My wife can barely get up from a chair without help. She eats next to nothing. She doesn't have the energy to read a book! I don't see how she's going to get through the next week, much less the 6 months of treatment. I am in despair as nothing seems to help. I'm afraid I'm going to lose her sooner rather than later, and there doesn't seem to be anything I can do about it."
Hope someone who can help can respond to her...maybe even get her to start a separate thread. You'll find her post near the bottom of this page.
Thanks!
LisaAlissa
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Hi Bosunblues, if you have arthritis anywhere it will be exacerbated by taking the AI so it is very possible that that is the cause of your knee pain.
I know I had arthritis in both knees (and elsewhere) before starting on Femara five and a half years ago but I have now needed to have both knees fully replaced.
It's always very worrying when we feel unusual pain and of course our minds take us straight to mets. For peace of mind perhaps if you ask your doc about having a bone scan to tule them out at this time.
Best of luck to you.
Love n hugs. Chrissy
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Bosumblues, my onc told me that breast cancer in the arms or below the thighs is extremely rare. Never say never, but I vote for arthritis. Femara will do that. You lose your joint lubrication.
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hoping for some advice from you amazing ladies. I almost 8 years our from beginning this journey. For the last 20 months I have been struggling with digestive issues tests up the ying /yang and the general consensus is that it is out of control irritable bowel syndrome. Never thought of cancer.....just trusted my doctor and specialists. Now I have a pain in my left thigh that is persistant and not related to injury or overexercising. Unexplained actually. I find that I am reaching for my pain meds for the bowel issues to relieve the leg pain. Looking for advice and some sense of how bone mets present. I have lost almost forty pounds over the last 18 months and am often headachy and nauseous. All of this the drs. Say is the IBS. However....IBS does not make your leg hurt. I have been off of work for the last 18 months due to the digestive issues and now am scared of the unknown. Advice please.
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janincanada, I'm so sorry you're dealing with IBS, new pain in your thigh and the fear that something besides IBS might be going on. I guess the first thing I would ask is, how was your IBS dx'd? Have you ever had a PET or CT Scan? Assuming the pain in your thigh has lasted for three or more weeks, I think it's entirely reasonable to ask for a PET or CT.
As far as how mets present, I think you'll find a wide range of experiences -- from deathly ill, as I was -- unable to fight off a wicked case of bronchitis or pleurisy (the only things urgent care docs found) that was causing horrible chest pain -- which led to a CT ordered by my onc, who I finally went to see to figure out if something more ominous might be going on. Sometimes it can be a specific pain, such as in a hip, that doesn't go away, and other times people have no symptoms at all and their mets are found incidentally while looking for something entirely different. There's really no one scenario.
Are you on a bisphosphonate by any chance? Though rare, femur fractures can be a SE of those. http://www.nejm.org/doi/full/10.1056/NEJMc1403799
As an aside, I struggled with horrible IBS for many years -- until I finally figured out (intuitively, and then via the IgG Food Intolerance Test) that I am highly wheat intolerant. I cut out wheat, and voila -- no more IBS. So if you haven't been tested for allergies, I highly recommend that. In my case, a naturopathic doctor ordered the test that clearly confirmed the problem.
But I would definitely ask for a PET or CT if you haven't had one recently -- if only to ease your mind. (((Hugs))) Deanna
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I have a query about staging specifically. Details of my diagnoses are in my profile. Basically, I have had a recurrence in all my internal mammary nodes plus significant spread in the soft tissue surrounding the nodes - 10cm in total. My pathology report does not specify a stage, only that I have "metastatic" disease. My MO says that I am in a grey area in terms of staging, but that a case can be made for placing me at stage 4.
I know it's just a number, but I'm curious to get your informed opinions as to whether I'm stage 3C or 4. I realise that a true stage 4 diagnosis involves distant spread into organs or bone, and I'm not officially at that point. However, there's so much spread outside the nodes which has now affected my left side (originally diagnosed in right breast). What do you think? I feel like I'm skating a line, so to speak.
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Calcon, I can't answer your question on staging but I often wonder if the doctors lean to the worst case scenario just in case of future treatments and insurance approval. My Mo put me at IIIA to begin with, and that has been revised downwards to IIA.
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Calcon, I believe what your onc has told you is right on. It seems like several years ago, when I was first dx'd, I had read somewhere that metastasis to the chest nodes (which I don't have) was considered Stage IV. However, more recently, someone asked the same question you are (although I can't find that post now), and was told by at least one other woman with a similar dx that she was considered Stage IIIC. I did a quick search both of BCO content and other articles, and just could not find anything definitive, although while calling it "metastatic," they also seemed to lean towards it being Stage IIIC. So it looks like you are skating the line, as you said. I know that must be frustrating, not to have a definitive stage attached to your dx. But the important thing is that you get on a tx that will nip it where it is and keep it from going anywhere else for a very, very long time -- by which time, we all hope and pray there will be more and better tx options for all of us. (((Hugs))) Deanna
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Calcon,
I am no expert, but what Deanna said make sense to me.
I'm in a similar position. I had a recurrence in my chest wall after finishing treatment for stage III and won't know if I have metastasis until I get a CT/bone scan next month. But my MO said that regardless of scan results, I will be treated the same. I'm still listing myself as IIIC but have posted in the stage IV section because that's where the xeloda discussion is.
Hope your treatment keeps everything at bay for a long time.0 -
Thanks for your input ladies. I suppose the main distinction to consider in my case is that I've been treated aggressively with curative intent, as opposed to being treated palliatively. I'm receiving very targeted therapy at the moment, and I think this would have been the same even with distant metastasis. I'm also due for my next CT/bone scans in Jan, so anxious times ahead. (Hope all goes well for you rossileo.)
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I have a question about tumor markers. When I was doing chemo, the nurse accidentally ordered TMs (MO said it wasn't necessary but it got checked on the lab req). I want to say it was around 12 and MO said it was good and exactly what he would expect during treatment.
I'm now 24 weeks PFC and still doing Herceptin every 3 weeks. I had BMX in Aug with a pCR. I had a full set of labs done a week or so ago and I'm supposed to see MO next week for routine follow up. My TMs are in the 20s now. I know it's still normal range but it's twice what it was during chemo. Is that normal? Or should I be concerned since they went up?
I have pain in my spine which I'm sure is attributed to Tamoxifen. My calcium and alk phos were normal. Just a little anemic still. I do get waves of nausea now and again (which Ialso think is Tamoxifen related) but my biggest concern is that I'm dizzy nearly all the time unless I'm laying down. If I'm standing and I bow my head and close my eyes to pray I just about fall over every time. I get dizzy every time I stand no matter how slowly I get up (is that also tamoxifen???). Last week I started to see the 'black cloud' that happens before you pass out and I dropped to my knees and used the couch to stop my fall but managed to not actually pass out.
I know Im at that stage where I think everything is a recurrence or a met and I guess I'm just looking for some reassurance...any words of wisdom would be appreciated.
Bekah
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Your dizziness could be cardio related. Chemo can damage your heart, it did mine. It's called chemo induced cardiomyopathy.
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I though of that too but I ust had an echocardiogram last week and my heart is great!
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Bekah, I don't know what's going on with you, but the constant dizziness and near passing out is not normal under any circumstances. I doubt it's bc-related, but I would think it should be your biggest concern at the moment, whether it's blood pressure or blood sugar or an irregular heart rhythm or something else.
As far as your TMs, I would think you and your onc would just want to keep an eye on them. Some fluctuation is totally normal, and, as you said, 20 is in the normal range, so I doubt there's anything to worry about. It's just if they were to continue in an upward trend it might merit further investigation.
I know it's hard not to think every little twinge or pain or unexplained symptom is mets-related, but most of the time, they're not. A good rule of thumb is to give any new symptom 3 weeks to improve or go away, because most "normal" aches and pains from a slight injury, etc. do resolve within 3 weeks. If it doesn't, that's the time to talk to your onc and get it checked out with a scan, for example, for your own peace of mind.
Good luck, and please keep us posted! But do figure out what's causing those near-blacking out spells, before you fall down a flight of stairs or have one driving! (((Hugs))) Deanna
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Thanks Deanna. I will talk to MO next week for sure about the dizzyness. BP and BS are good. Maybe I'm just dehydrated?
Thanks for the reassurance about the TMs. I'm sure MO will repeat them in a few months.
It's so hard to not think everything is cancer now
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Hi Bekka all those thing you are dedcribing are definitely Tamoxifen related. I see you haven't been on it that long so all those things still have time to settle. You will find that over time SE will come and go but if any hang around a long time or if they really are troublesome please mention them to your doc as he/she may be able to give you something else to allieviate them.
As to your markers, at 20 they are very much in the normal range and nothing to be worrying about even though they are higher than when you were doing chemo.
Hope those SE settle soon for you.
Love n hugs. Chrissy
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Great - thank you Chrissy!
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