If you are not Stage IV but have questions, you may post here
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Ok, I have another question!
Did any of you with spine mets have itching? It seems that I get an itch right in the same spot where the pain seems to be, however, actual scratching doesn't seem to help!
Anyone else experience anything like this?
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not really a stage 4 question per se, but since you ladies always seem so knowledgeable..
Can good white blood counts while on chemo be a sign it's not working!? Even when mums tests seem good I am worrying!...(stage 4, mets to brain, bone, lung an d liver)
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Nettie I'm sorry, I haven't experienced anything like that but it is possible it's because of added cell activity that gives the sensation of an itch.
Papillon if your mum still has good white blood cell counts I would be looking at the positive which means that she is doing well and able to keep receiving her chemo. So many have to skip treatments because of falling white cell counts.
Love n hugs. Chrissy
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Went for physio today and she thinks it's the Tamoxifen that is causing my pain. She says my lower back is weak and she will work on it. I also spoke to my surgeon and she is not worried and wants to see how the physio goes before doing bone scan.
I hope they are right xx
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Ali that is good news and I'm sure they are right. If you think about it, if your lower back is weak and trying to support everything else which it does, of course there is going to be pain as it struggles to do it's job. I think you will find that after a few weeks of work from your PT you will be feeling so much better.
Good luck!
Love n hugs. Chrissy
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Just an update to my post last week. I had blood rechecked and Tumor Marker has gone up again from 46.3 to 52. Dr. still tells me not to worry that Ca27.29 test is not always reliable and it could still be inflammation from my DIEP Flap surgery in December. I had a CT scan of my Abdomen for my DIEP surgery on November 23 which showed my liver, kidney, uterus and ovaries were clear. Dr. initially said we should do an upper CT scan and a Bone scan. Now she called me and based on my numbers would prefer a PET scan. I am not happy about getting so much radiation. I questioned why she changed her mind on the scan. She said PET scans are more reliable in finding Mets. I think if my back weren't bothering me she wouldn't ask for the scan. My anxiety continues. I wonder if stress could raise a tumor marker also because I have definitely been stressed over the last two weeks.
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Hi ladies!
Sadly, I must seek
advice once more.My mother has…lost it.
Everybody is going – it’s the shock of mets, it’s stress, it’s this, it’s that…They
think psychological.I say – I need more
answers.She is the bread
bringer in this family. I am a student, and totally dependable. We have some
money set up, and we own out home, but we are in for big expenses due to her illness,
plus I need to keep paying my tuition.She sleeps about 3
hours a night, and even though she never slept all that much, I am thinking
sleep deprivation is a factor. For people that don’t know her – she seems
stable and upbeat. But, I have know this woman for 25 years.She wants to give away
all her expensive jewelry, family heirlooms included. I asked, point blank, if
this is a good-bye list, is this a part of her will and testament – and she
said NO. She will buy us BETTER jewelry (first off, there is no way. The whole
box is filled with gold, diamonds, etc. It has been collected trough years and
generations. It’s not replaceable. And second – I don’t think we can afford a
singe bracelet. ) She was always economical and prudent, but now she is buying
things left and right. In two days she made a couple of thousand $$ worth of
purchases for appliances. Appliances that are NOT something she wanted all her
life. It’s not a fulfillment kind of thing. It’s random, and weird, and stuff we don’t
need. Stuff MY mother would never look twice at.She lost all her filters.
She was never open to random strangers, and more importantly she never told
personal and private matters to the broad family circle. Now she is sending
e-mails to her freaking business partner (they are kind of friends, but really,
the woman is her boss) about who married whom, how many sandwiches I ate, what
the dog did, remembrance of her mother. She is telling people how much she
earns, how much we have in the bank, how much our house is worth. She would
never, ever, EVER, say this to others. She told a friend, at random, how much
my alimony is for this month. People that she never told a thing in her life
are now privy to deeply personal things.It’s all mad ramblings about private matters, day in
day out, and they make her seem permanently drunk.She misses letters on
the keyboard, and on her mobile phone. She is unable to write down a 0 or a 6 because
they suddenly look the same on paper. She wrote a lengthy
email yesterday that had the word TODAY used 27 times. I counted.She uses no interpunction
signs. It’s like they don’t exist anymore and the sentances just go on and on
with no connection.She wants to see this dog whe had for a while (my
father gave it to me, even though I already had a dog. Since it was the
antichrist, we gave it to my uncle – he had kids, and a big back yard), and she
rambles about loving him – she hated that dog from day one. She wants me to
frame a doctor she dislikes, she wants me to steal a family painting an aunt is
holding hostage (for, like 50 years, and we always laughed about it). She wakes
up at night and talks incoherently about vegetables (I have no idea what that
is about) and screams her head off.I tell her something,
and she forgets it after about 5 minutes, and asks again and again. She forgot
most names of my friends, even though she knows these people and hears about
them every day. She sent a picture of me as a child to an ex of mine, without
any explanation.It just a jumble of unconnected
personality aberrations, sprinkled with real problems like vision problems,
motor problems, being unable to remember or write as she should.I am at the end of my
rope. Little things started before the shock of finding out about mets. But it
has since escalated. She was 100% incoherent – screaming sentences that made no
sense – about 24 hours after the MRI that showed those, but at that point she
had no sleep for about 48 hours. I’m worried. I’m devastated. As I said – she is
the one working, but for how long will she even be able to do that? I wanted –
badly – to just subscribe this to coping, living her life to the fullest, but
it’s NOT that. At least – not ONLY that, and as I said, it started off even
before the new diagnosis. She has water retention, her sugar levels are sky
high, etc. I have now ordered thyroid hormones and a re check on calcium and
markers. (You do NOT want to see that bill.) Her scan showed that the brain is
100% clear, no mets, and no evidence of a stroke. She has some minor ishemias,
but those were old and consistent with her age.What the hell am I
dealing with?What in the name of
all, should I do?0 -
Just wanted to say i really feel for you and what a terrible time you are all having. The first thing i thought of was brain mets but you say all clear. I have a close friend who started saying and doing funny things and this went on for a few years. she would come downstairs and say to her children " who are You" her marriage broke down because of strange behaviour. One day she had a black out and fit so they gave her a brain scan. It turned out to be a brain tumour. I would speak to your mums doctor and say you need help with this . Also it could be her way with dealing with the mets - anything not to think about it.
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KarenSusan, those levels are really not that high and it is very possible that it's still the inflammation from your DIEP that is sending them up. Stress, like anything else can unbalance the equilibrium of you body and cause inflammation so in a round about way, yes your stress could be pushing them up also.
Please try to relax and let go of the stress and wait for the results of the PET that has been ordered......your doc is listening to you and taking your fears seriously.
Love n hugs. Chrissy
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Alyon, you say your mums sugars are off the chart.........get her to the docs now! Her sugars need to be stabilised ASAP as this will cause a lot of the stuff you say is going on.
If this behaviour continues I think your mum needs to see a psych to help her assimilate her stage IV dx.
Good luck.
Love n hugs. Chrissy
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As I said, I understand
that it could be a coping mechanism, but it’s like she had a personality
transplant. Plus, being incoherent? I never heard of that as a coping tactic.I can get the food
obsessions.I can even account for
the spending – if it were something she wanted.I can maybe understand
her wanting to strap crosses and religious paraphernalia all over the house. (Ugh.)But the speech delay,
the paranoia, the ramblings, the unwillingness or being unable to write or
think as well as she should? I don’t know.They gave her Metformin and
said that that is enough to keep it all at bay. It was about 18-20-23, and it
drops down some.I can’t actually
make her go to see a psychiatrist. She is so horribly against them, and when I suggested
it, it just went downhill from there. (cue screaming and crying and telling me
I’m a horrible person)0 -
Alyon,
I agree with Chrissy, get those sugars checked.
Additionally, consider she might be having a mental breakdown. The good news is that is IS TREATABLE!
My mom has suffered a few mental breakdown episodes, and yes, ALL the things you mention fit the bill. She is now on two types of medication and is "normal" (please define that word!) so I guess I should say she is back to her old self!
While you are trying to sort this out, please change her email passwords, if you can. Remove and hide at jewelry and anything else she is trying to get rid of. Tell her you took it to someone to be appraised for the better jewelry she will buy. Seriously sly though, I don't know the steps in your country to get her help. For my mom we drove directly to a hospital with a psychiatric ward. It was difficult to do but it was absolutely 100% necessary. First they had to clear her medically in the ER, then they transferred her to psychiatric. It was reaffirming to know she was SAFE, as was my dad...she had paranoia about him, I was afraid she would kill him. She was there for at least a week, if not two, and they got her on medication that fixed the chemical imbalance and gave her back to herself.
I would recommend you do not wait to get her help. Wether you believe it is sugar or psychological, or whatever. Please act now.
Wishing you the best.
Pat
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AlyonA,
I am so sorry, this sounds very frightening. Someone with more knowledge will come along with good advice. My only suggestion would be to call her Dr., speak to the nurse. She will not be able to continue to work if things don't change quickly. You might also put your good jewelry in a safe place ( hide ) until her behavior changes.....so, so sorry...maybe sleep meds? Try to get her sleep habits closer to normal, 7-8 hours a night
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Please, alonya. i know that this is hard, and distressing to you, i did the end of life care for my best friend who had lung mets to her brain, and she exhibited much of the same behavioral type things your mother is experiencing. is your mother on steroids? my friend was, and she talked about food alot, and it caused her appetite to be extreme, and her sugars also sky rocketed. i know your mothers brain is clear, thank god, but seriously,you need to tell your doctors this, or get a second opinion. that is no quality of life, you included, and there is hope. you may have to do something against her will. she must be evaluated, and meds adjusted, or a new one brought in. something! believe me, she will thank you later. it doesnt sound like there is an organic cause for all these behavioral problems she is exhibiting, but, i strongly urge you to take her to a neurologist, to find out what is going on. are you the one designated her primary caregiver/power of attorney?
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I actually broke in to her emails. Like, all of
them. This has escalated before the met diagnosis. I must have missed it in
every day life, because it was not as pronounced. She goes from being brisk and
efficient to a bit…drunkish? Using LOL and etc in business correspondence. It
gets worse, worse and then it’s like…incoherent.(Example: Today Sandra willbring Ana Alek (Sandra twin
brother) wife, Thhey took Zltks dog
cvetnaja bolonjka in sept 2013 for a fe days while dina went to Budapes. They
have tweens Andrea and Aleksandar around 10. Aleksander, like his father Alek
loves mt, computer and MAza. Andraa is lefthended, likes to paint, is a real
girl and loves Maza cvetnaja bolonjka, and maza loves them all. Tomorrow dina
will one instution RIstic that offers: 1
fizijatar dr, Kinezitherapy 18 termina + general massage, 10 termina, 1
fizijatae dr. Tomorrow afternoon my aunt Lidija who's hip healed comes to Alek
and Ana and Andras and Aleksandar and Maza. : My sister Lidija and her daughter
Lora and her sister Sandra are comming in the afternoon to se me. on Saturday.Me and DIna have a
free day on SUnday. And on Monday LIdija will coma to work on my pention from
the state. As they stole my 3 years of work and jealt payment on and not in
awar but 2 years ahea and thanI need another a bit less than 3 yeras her - it
can be bought.)She writes in English and works for an American based PR
firm. Couldn't really see that from all that jumbo, now, could you? This mail is sent to her freaking work partner, whom she has a business relationship
with.(Previous normal correspondents example: Whatever you wrote in the report - for estimate
- regarding the further LOC work. Tell them I (but also you) would be
interested to work on our own info pages from 2011 - reedit, update content
than reutilize . They are all there. And they are still the best performing. I
truly thought I was clear - for all the above - yes we could take LT as the
client and we could work similar to the job we do for PP per month.)I called the dr
office, but they told me to just wait till after the weekend. Well, oookaaay,
thank you for your support, idiots!And I just got the blood test results, and everything is all over
the place. TSH is elevated, and TPO is trough the roof! Markers are fine – with
CA 15-3 being even lower than usual (and under the limit), and her calcium levels are super low (a
bit too low even). He liver is clear of mets, as confirmed by a ultrasound, but
it was fatty…still, her liver test are HORRIBLE. Her alkaline phosphatase is
about 40% over normal, gamma GT is ….like, 3x the normal, and LDH is 2x the
normal. Enzyme creatinine is super low, but well, I have no idea if this is due
to lowered muscle mass or the liver again. She has almost no white blood cells.We went to a
neurologist after the MRI, and he gave her flying colors. She was coherent. So,
she is not declared unfit or anything. We don’t really have a caregiver unless
you are considered unfit mentally. It’s just not in the law. I could call an
ambulance, but hey could say ‘no, if they feel like she is feeling fine. And,
yes Kathec, she is on steroids. They are toning the down right now, but she was
on them for about 2 months.I am soon going to go
ga-ga myself. And fyi, I am so sorry for spilling all my drama on this page.
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then alonya, i am almost certain that the steroids are the problem. i am not a doc though. but i have every note and bit of writing, that my friend sally had done, in her 6 months on them, and they sound just like your mother. but. when the docs did stop the steroids(tapered), her writing became much more coherent. she may be having an extreme reaction. please give the drs a little slack. i know we would like to have them concentrate only on us, But, they are dealing with a LOT of US! And, please please please, remember to, in all of this, to take care of YOURSELF. i know what taking care of my friend did, and how it affected ME, and how much more heart-wrenching it must be, for you, it being your mother, for God's sake, so please take care of you, please, too. Do you have anyone to help you with her that you can trust? that she wont give family heirlooms to? and please bring her with you to the dr,to the emergency room, if possible so that this can be resolved. i will be thinking of you both, and wishing you the very best, all day long, and will check back in.
hi crissyb. i miss you, and owe you a pm!
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AlyonA,
Please, never feel like you need to apologize, we have had to reach out to others here, many times.
I am not knowledgable when it comes to levels of blood, calcium, any of it. So, I have no good advice there. I, think that you were able to discover that this started before the stage 4 diagnosis is helpful. Was she on steroids then? Wish I had more to offer, you are a rock. I am sure your mom, would do anything not to put you in this position.
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just a note, I think Chrissy is traveling right now, to her brothers..
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thanks,holeinone! now, i wont feel QUITE so bad, for neglecting her, and hope she is having a wonderful time.
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Hi AlyonA -
What a scary thing for you. I am not a doctor but I wanted to tell you about an experience I had with my brother recently. He is a diabetic but was not taking insulin even though he should have been. Then he came down with a very bad case of Legionnaires disease and was hospitalized. Part of what they put him on was steroids - which sent his blood sugars through the roof and such high blood sugars did affect his personality. He was going to have an MRI and they gave him Ativan - to calm him down (it was a small amount for his size). Well - he went off his rocker. Seriously he was talking about how MRIs suck your brains out and he had been talking to the doctor in the Clingon outfit but had outsmarted him, etc.
It scared the heck out of me. Now, of course, I have no idea if this could be the same kind of thing that could be going on with your mom, but I would check all of her medications and when she started each of them, anti-anxiety meds and anti-depressants can have very strange effects on some people - and I have wondered it my brother's response to a very small dose of ativan for his size was not in part prompted by the high blood sugars and/or steroids. It seems like the docs would recognize it when the drugs they give somebody make that person go nuts, but in my brother's case they only told me offhandedly that they had given him an ativan - I had to point out to them that that was maybe the cause of the his personality change.
Just a thought, I am really sorry that you are having to experience this - it is so difficult to have somebody you love change into somebody who seems so different.
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Alyon, just a few far-out sounding possibilities. I don't know your mother's age and if she fits, but my husband had similar problems and this is what it turned out to be (different times).
1. Diphenhydramine HCL, a very common over-the-counter medication used for allergies, better known as Benadryl. In addition, this is the same drug used in most nighttime 'sleep-aids'. There are many references online from major drug companies and medical research studies, but this article explains it the best:
Grandma Isn’t Crazy, She’s Taking Antihistamines http://polymedicine.com/article.antihistamines.html
My husband stopped taking it, and all his symptoms went away very quickly.
2. On another occasion, I was stunned to find out that Jim's sudden weird behavior -- for which I took him to the ER -- turned out to be a response to a urinary tract infection. I had wondered about them requesting a urine specimen from him, like what does that have to do with his nuttiness? Never had heard of a UTI doing that before but it seems fairly common. All was well after antibiotics eliminated the infection.
Hopefully, the doctors will be able to get things back under control for your mother soon.
Carol
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Dear AlyonA, I'm so sorry you are having to deal with this. Could be medication-induced, or since it started earlier it could be something else. I admit I thought brain mets too, but since scans are clear must be something else.
You said she has a business partner. Can you talk with him or her? Do they agree your Mom's personality has changed? If she has a boss I wouldn't go there, but a co-worker? Someone you can trust? They might have some insight into the issues and when they felt they started. It would be telling if her workplace thinks she is fine but at home she's in trouble.
With lucks the docs can help.
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Hi there, I am not stage 4 but do have familiarity with the urinary tract infection issue mentioned by Caroll and support it's worth checking on and is simple to check and cure. In older patients the pain we would all normally asssociate with urinary tract infections doesnt generally happen so the infection can get worse and truly can cause neurological issues as you described. The neurological changes can mimic and seem like alzheimers only its sudden on set as you describe. Its worth a check for your mom and is a simple urine test.
I wish you well .
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Hi Chrissy HUGS,Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy
Bluebird144…NJJoined: Apr 2013Posts: 39313 hours agoBluebird144 wrote:
Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.
I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.
I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.
Knitted knockers website:
http://www.knittedknockers.info/
Fall down seven times, stand up eight.
Surgery 09/09/2009 Prophylactic Ovary Removal (Both)Chemotherapy 02/06/2013 Adriamycin, Cytoxan, TaxolSurgery 07/19/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left); Reconstruction: DIEP flap (Both)Surgery 08/20/2013 Reconstruction (Right)Surgery 08/28/2013 Mastectomy (Right)Radiation Therapy 10/14/2013 3-D conformal external beam radiationSurgery 01/24/2014 Reconstruction: Tissue expander placement (Right)
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Hi ladies
This is my first post on this forum. I am looking for anyone who has been diagnosed with lung mets. I recently got back a CT scan showing enlarged nodes in my lung. Im wondering if others with lung mets might share with me how it started for them. I wont know if its cancerous until a biopsy is done and Onc is saing it is to small and 'in' the lung so I am at a wait and see stage. Any experiance on this would be appreciated.
JAB
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Hi Jab. I don't have lung mets but there is a 'Lung Mets' thread that has a huge amount of information that you will, I'm sure, fnd very useful. If you do a search it will be easy to find.
Here's hoping that once you have the biopsy it turns out to be something other than BC.
Love n hugs. Chrissy
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Thanks Chrissy - I appreciate the help!
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just a follow up. Dr sent me for PET Scan results showed slight activity in an abdominal lymph node and one spot on Liver. Spot on liver too small to biopsy so they will biopsy my abdominal node. Feeling scared right now.
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KarenSusan, I'm keeping my fingers crossed that the node tests negative. Sending love, gentle hugs and hope.
Chrissy
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wishing you the very best of results, too, Karensusan.
Hi, chrissyb! Good to see your smile!
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