If you are not Stage IV but have questions, you may post here
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mum has been on dexamethasone for about a month now. Just 0.5mg a day so very low. But oh my what a change!! She is eating and liking it for the first time in a year, and walking around the garden, and down the lane, and all sorts. A month ago she hardly left the house. Am so happy.
How long can someone be in dex before side effects kick in? I know she can take lots more when it's needed, but they don't like long term use do hy hey..Am suspecting the answer may give me an idea of prognosis... (She was diagnosed stage 4 14 months ago).
I think it is planned for to stay on it for "ever" now. Cn people be on it for months?
Best wishes to you all xx
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Papillon, my mother-in-law took 5 mg of prednisone daily for 20 years [for polymyalgia rheumatica] with no problems. If your Mom isn't experiencing any side-effects now, I doubt there will be any. Except for the bones, of course, but they can do something about that. Glad she's doing better!
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So I have a couple of enlarged lymph nodes in my neck about bean sized. I noticed them about a month ago. I haven't been sick at all so wondering if they could be mets. I had 1 positive node but I know the neck nodes are not in the same lymph chain. Anybody else have this?0 -
lexie, I have had enlarged lymph nodes in that same area a few times, before and after bc (mostly before). My drs said that it couldn't spread in that direction, if I recall correctly. However, you should still have them looked at. Do you have any other infections or anything going on? I have heard other things like arthritis can also cause that, but not sure about the details of that. I have had one in my groin for maybe 8 months or more now. They keep looking at it. I had a needle biopsy, all clear. No infections. We actually tried giving me some antibiotics to see if anything changed. It's kind of a mystery. It could be a cyst. They said it doesn't spread in that direction either so it would have to be a whole new cancer, like a lymphoma. They could take mine out to dissect it but they think it's probably nothing and then I would be at risk for leg lymphedema....
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Hello ladies
I have been having a few aches and pains in my left hip and thigh leg and occasionally my right pelvic bone too. Was feeling very worried until I came across this:
http://www.patient.co.uk/health/greater-trochanteric-pain-syndrome
The chemo nurses said I should look out for any pain that is persistent and getting worse. This ache in my left hip and leg seems to come and go.
I don't really want to go to the docs again - had several appointments last year for things which seemed alarming but weren't really so such as a lipoma and an inflamed lacrimal gland - and hope to just get on with my life.
OK to leave it for a bit and see what happens? What do you think?
Alice
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Well it's day two of no Tamoxifen and I feel so good. No pain, no hot sweats, no feeling of flu and feeling pissed off. People will say it takes time to get out of your body and yes it does but I think it must really effect me badly. My head feel 's normal and it's like having a holiday !! I know I have to go back on it but I think I will have little mini breaks for the next eight & half years left.
If I didn't have kids I wouldn't go back on it and take my chances.
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Hi Alice, only you can tell how your pain is but I agree with your onc nurse when she says don't worry too much unless the pain is constant and getting worse or if it is worrying you so much you need to 'know'. Sometimes a visit to the doc is not about anything else other than peace of mind.
Ali, asked your doc about Fareston, it does the same as Tamoxifen but put together differently so it may be better for you and well worth the question.
Good luck ladies!
Love n hugs. Chrissy
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ali, good to know that you are getting some answers from your vacay.
Chrissy, I just noticed that you were node negative. Supposedly it is a very small percentage of women where it spreads other than through lymph nodes (I've read 4%), but I keep coming across node negative Stage IV women... It is unnerving.
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Cypher, yes I was node negative but I had LVI (Lympho Vascular Invasion) so that was the source of my spread.
It is a scary thought but usually treatment can and does in most cases take care of it. In my case I was refused chemo after the first round as I was too toxic and the onc told me that he would kill me if he gave me any more and then I was allergic to Tamoxifen so I was virtually with out treatment. I was not surprised when dx stage IV as I expected it all along I just didn't know when.
The percentages for stage IV with no node involvement are really low, almost not even a blip on the scale and I think you would find that those who are have had LVI and possible problems with treatment so don't let it get you down.........you have done all that is possible to do so your chances are very low indeed.
Love n hugs. Chrissy
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well Chrissy that is really comforting. Thank you so much. Do they not give you chemo now to help control the bone mets?
I have another question for you. Could you tell by looking that you had LVI? I ask because my breast looked rather veiny around the time I was diagnosed. It sounds very woo woo but I worked with this energy healing lady while I was waiting for my surgery.
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Cypher, right now I am being controlled with Femara but chemo will be in my future........just not as strong as that first try.
There is no way to tell if you have LVI just by looking at the outside........that is discovered in the Path lab when the pathologist is doing his thing.
Love n hugs. Chrissy
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Chrissy, i am perpetually amazed and grateful for your kindness and helpfulness. On another note, what does sugar glitter cheeks mean?
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Lol......Cypher that name is a silly Elf name that was part of a game and I put it there so I could remember it. I think it may be time to get rid of it.
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bump
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I loved it, that it said suga glitter cheeks!
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Me too!
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Trying not to panic. I had a CT last week b/c of some wonky blood work and ended up being scheduled for a PET and an appt with a thoracic surgeon next week b/c of a 2.2 cm lung nodule (that wasn't there when I had the last CT around six months ago). I know lung nodules are common, but I can't erase the look on my MO's face when she told me the news earlier this week. We had been talking a couple weeks earlier about my "great" prognosis and how hubs and I are adopting a new little guy.
Any experience with a nodule that big, growing that fast? I really don't want to freak out over nothing but the thoughts are just crazy, you know?
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Hi GrumpyCat I have no experience with a nodule that was that big or grew that fast but it can still be something other than a met. Please try to take a deep breath, let it out slowly and remember that until that thoracic surgeon takes a biopsy and you get results from path it's still possible to be nothing nasty.
Hoping for the best for you.
Love n hugs. Chrissy
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Thanks, Chrissy. I think I'm trying to balance believing the best and preparing for bad news and that's never an easy place to maintain that balance. I appreciate the encouragement...and deep breaths. They help.
Stef
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Grumpy, I have no idea really -- I've never been "there" and hope never to be, and I spend plenty of time worrying about it. But reading someone else's words makes me realize that it's probably pretty pointless to try to prepare yourself for that kind of thing, because I just don't think you have any idea what that's like until you're there.
I could be wrong! Just my two cents.
Good luck and keep us posted -- I hope you get good answers soon!
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cypher, I'm sure you're right. Thanks for giving me a gentle shove in the right direction.
Will keep you posted. I'll know more Monday, hopefully.0 -
Grumpy, seeing you articulate what was going on in my mind helped me as well. Anxiety is helpful if it prompts me into noticing something or pushing to get tests, more information, some action, but otherwise I am just driving myself crazy when I could be doing something positive like trying to enjoy my life (or at least tick things off my to do list)!
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famous last words.
ok I am having tenderness in my right rib area, on the cancer side. I had this before around the time I finished treatment but had a CT scan and a bone scan then and they were both clear. It went away. Now it's back. It might be a pulled muscle or something like that. I can actually feel a cord on my right side around the area where the pain is, and I do NOT feel it on the opposite side. I'd appreciate everyone's thoughts on that ...? Thanks.
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Cypher rib pain or more precisely pain in the rib area is not uncommon after radiation. Radiation doesn't only kill off any stray cancer cell it also damages muscle and tissue that is good. You may have an area of inflammation in the fine muscles between the rib which is causing you pain that comes and goes.
With all the treatment that we do for BC there are a lot of lasting effects that we will always need to be aware of. Even though we can go on living that living is definitely changed and not always in a good way.
I hope taking some anti inflammatory will help get rid of your pain as well as ease your anxiety.
Love n hugs. Chrissy
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chrissyb, i just love the way you put things.
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thanks chrissy. I don't think I had radiation down that far? also it is kind of a cord. I was thinking the cord might be some kind of truncal lymphedema or something like that. I'll email MO. you are always so helpful and reassuring...
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Sounds like cording...I had it. It is quite painful and can extend down into the groin areas. OT and or massage got rid of mine0
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what causes it? it's sort of bizarre
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cypher, that kind of cording is called Mondor's Disease (though it isn't really a disease). There's a good explanation of it here:
https://www.breastcancercare.org.uk/breast-cancer-...
Hope you get relief soon! Be well,
Binney0 -
thanks. I'm a bit confused because it is lower down, like literally down my side, and the pictures seem to indicate it is someplace else. but it does sound like that. Anyway it does NOT seem likely to be anything scary!!
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