For Older People with Sense
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jey ladies, Marybe, tried calling you. clear your voice mail on your hone phone!! if your up and reading this call me, girl!!nothing imp. just a "chin Wag" as chrissy calls it...lol
I'm so glad you had a good time, Chrissy, and thatyour DD is doing sowell. will continue to pray for her, as i know its' a rough time after...
so glad to see you girls, everyones' been "missing" lately, ive been up, and reading, though...
Isabella, when's the hyptno conig ?
my visit to the neuro was really baffling. he's top of his field, from "Hahvahd" none the less, a bit argumentative, but thats' to be expected in their field...
his take on it: yes, you're having cognitive problems, yes, your gait is off, yes, you have no reflexes at all in your knees.. then, he looks at the MRI and says.. yes, i see the demylinazation, BUTT... it doesn't resemble any type of MS i've seen... answer? yep, a million other tests, see you in six weeks....
then, a physical therapist, and excersises.. got ya, ck already doing that.. ok keep doing it, and we'll discuss next time... WTH/// here we go again!!!
so, im still in the dark, and liable to stay there, for awhike yet... grrrr.,. but, alls good. i didn't hear secondary progressive, like i thought i would, so thats' good...!!
later, im sure... 3jays
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3jays, sorry you didn't find out more, but no progression---that's really good news for sure!
Kathy
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sorry, QCA.. its' really confusing... he SEES progression into the brain stem (which is def not good ) but, he can't explain it.. i think its just that Im a miracle, and he can't figure out how i can function so well, and not been on meds. i think he thinks meds are the only answer.. i do, PT regularly, stretch, excesize, all kinds of things. it shows in the brain, but not so severely in the body. i PRESENT well.. then, he got touchy when he found NO reflexes what so ever in my knees, one of my main sources of pain.. so, he ordered nerve conduction tests... again! yeah, buddy, the message from the brain isn't getting to tthe knees, duh! and, I look so good, too!!!
sorry, im still aggravated. but, hey, im grateful, it could be a lot worse!!!
in the meantime, he's not negating all the things i went for, he just can't "calssify" me, and it bothers him!!! ah well.... thanks for thinking of me....., 3jays
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I enjoy it when you confuse doctors. Have done so for a lot of my life, sometimes its fun not to tell them things and see if they can work it out. Just keep on confounding them 3jays.
Marybe my hand is still bruised from the scan last week, they had trouble finding a vein, only three tries!!!
Barbe, I wear my pink sleeve and gauntlet went I go for any sort of tests and have done so when I had other surgery last year. Just reminds them they can't use my arm.
Must think about dinner here, still early but have to get things organised.
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3jays, glad you had no progression but ugh, more tests.
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Well Ladies, I probably should not post prematurely, but "things ain't lookin' good". I went and picked up my scans, which I am for the lst time thinking may not be such a good idea since I don' t know half the terms or what they are talking about on the MRI I had done of the brain. I went to the medical dictionary and looked up things, but it still doesn't tell me a whole heck of a lot, other than the fact they saw something....maybe they would have seen even more if they could have found a vein and used the contrast. Anyway, the line that worries me the most under Impression: is Solitary sclerotic metastasis left parietal calvarium, Parietal means near side & top of skull and calvarium means portion of the skull including brain case. So does that mean I have mets in my skull? Also it says I have a retention cyst left maxillary antrum....Antrum means a cavity in the bone.....are they talking about my jaw? I know maxilla and mandible from being a hygienist. Could I be starting on osteonecrosis? My imagination is running wild here, I know, and thank God I see Dr.Cody this morning so he can explain all this to me. Also it talked about chronic small vessel focal ischemic changed in the deep white matter both cerebral hemispheres. Deep white matter....don't like the sounds of that, but at least that proves I do have a brain....I did have two TIAs that I know of so wonder if the Ischemic changes are from those. Who knows....guess it does no good to wonder and I will find out soon enough, but believe me I am worried and thinking petty crap like If I have to have radiation will I have a big bald spot. How can I think something so petty after all KonaKat has had to endure...and there is another women, Chainsaw maybe?....she did WBR.....so I know I am just being petty, but that's the way I am. It is the small S@#& that I sweat. Now the liver, I know what is going on there....it's heading south....tumor that was 4X4 cm is now increased to 6X6cm....another one that was 7X7mm is now 15X15mm and they are also talking about a bunch of new metastasis.....multiple they termed them and one is 2X2 cm so they aren't all small. BUT I have been living with liver mets and just have to assume we will look for a new chemo that will really go after these.....it's the head part that has me concerned. I do not like change. Normally if I sleep on something it is better the next day, but with this even though I got the report, I have no idea what it means, just know it isn't good. Whatever, he says, I am NOT going to jump in and start a new chemo today. I will get my Xgeva shot since at least my bone mets are stable, but I am not going to start a new chemo without posting on the BCO board what it is and asking about it, also want to ask the onco at MDA, and I want time to digest the idea. What difference is a week of two going to make at this point? Who knows maybe I will have a decent bowel movement without the aid of a laxative if I am off the Gemzar a few weeks?! So that is all I know.
Oh, I did go to the ophthalmologist last night after work before going to pick up these reports at the hospital and he plucked two eyelashes from the rt eye and 5 from my left and I am good to go for my lst cataract surgery on Friday morning at 7:30AM.....unless my INR is too high, but I have been cutting back on the warfarin so it won't be too high.....they told me I don't have to go off of it would just prefer it in the 1s as to having it 3. That would be my luck....bleeding to death from the eye.....but the assured me there is really no blood even involved with this procedure.
Re my veins....I always tell them ahead of time that my veins are bad and that they roll, but they just don't get it. I will ask about the foot that several of you told me about using, but I do think that if I am in an actual hospital they can use my port or at least there will be someone on hand who is skilled at hooking me up to an IV.
So now that I have unloaded my woes on all of you, I will bid you Adieu and hope you all have a good day. I had been doing real well with not pigging out the last few days, but think today is going to be mac and cheese. Oh, and you know I just honestly do not know what to think about my onco....he kept saying don't worry as we watched the CA27/29 go up, kept saying they aren't always accurate, BUT they were in the past and I think the fact things have progressed so much in my liver shows that the tumor markers still are accurate on me. However, at this stage of the game, what am I going to do? Change oncos? I know I am always encouraging others to get another opinion, but this guy is good and I really feel he has kept me alive whereas that other onco I went to just let me go to Stage lV....and I did go to MDA and that guy didn't exactly bat 1000 with the recommendations he had that we tried....maybe I am at that point where it isn't going to reverse, I don't know. I would just be happy if we could get to stable in the liver since I still feel fine....and my head, well, I just don't know about that problem at all. I will keep you posted......unless I come home after my appt, I will post tonight after work.
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{{{{MARYBE}}}} Hugs gal. Prayers going up for you.
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{{{{{{{{{{{{{{{{{{{{{{ Marybe }}}}}}}}}}}}}}}}}}}}}
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{{{{{MARYBE}}}}}}}
Love and prayers to you.0 -
((((Marybe))))
I will be praying for you. Please let us know the results.
Marianne
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(((Marybe))))
There are no petty things about this! Focusing on the minutiae lets you get your head wrapped around the big stuff. I hope your doctor explains everything to you and has some encouraging words. You are in my prayers.
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{{{{{Hugs}}}}} Marybe. I too will be praying for you.
Kathy
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Am I too late to join? Is there a test for the "sense" part? That could be a problem for me, but I've got older covered!
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Chrissy,
I don't get into negative discussions. I just move to a different site. I have Metaplastic, Triple Negative Breast Cancer and I have just finished my chemo and radiation. I'm celebrating and here to encourage others who are just beginning this journey.
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Nurse--MD Anderson is a good hospital. I have gone to Baylor in Dallas and it has a new cancer center. It's modern, clean, and well staffed.
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Marybe, I'll be praying for you. Warm hugs.
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Marybe, hope all goes well for you.
I'm also a hard stick. When I had my original chemo I had 4X A/C & 4X Taxol without a port. Onc & I both figured only 8 tx, easy veins to find, why bother. Big mistake. My veins now are destroyed, and like all of us there's only the one usable arm. I now have Aredia infusions once a month, and at first the onc said it was fine to have it in my local general clinic. Then at one infusion there I also had The Seven Sticks From Hell. This was not one incompetent nurse. This was the nurse calling the PCP after 2 tries, the PCP calling the pediatrician after 2 tries, and then the pediatrician trying twice then slathering the back of my hand with Emla and eventually getting it there. After that I told the onc I want a port & don't care if it means that I can only have the infusions at the hospital chemo ward. Ahhh! Much better!
When you have scans in the future, you might want to find out who at the facility is the best at doing IVs for hard sticks and have that person do the stick before you go & have the scan.
All the best.
Leah
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Marybe, so sorry you're going through this. Feel free to vent and rant and anything else that makes you feel better. I think all of us here can take it. God can take it too--I've thrown Him a few unrepeatable words in my time. Please tell those dumb nurses to get someone good to start your IVs if you need any more. Every hospital has somebody who's a real expert. For example, anesthesiologists and usually really good, as are nurse anesthetists.
I have about as much ambition as a nematoad today. I think it's time to watch some daytime TV! Ellen, here I come.
Dragon (Lynda)
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just sent one post off to cyber space..dern fingers!!I didn't sleep a wink last night, too much "thinking" some of you have e amails to attest to that!..lol
Marybe, im with ya girl, heart, soul and mind... im thinking that your'e right about the white matter.. def. from tias' mines full.. but , the other stuff is baffling. waiting anxiously to hear what the onco has to say.. then, you'll get a plan together. its' always easier when there's a plan in effect... 3jays
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Marybe. Just to say I am thinking of you, and wishing the best for you at this time.
Hoping that between you, Dr Cody and checking out others in a similar stage to you here on BCO, you'll wind up with a chemo regime that will suit. Hope you'll get thru' the next few days OK.
((((((((((((((((Hugs, Marybe)))))))))))))))))))))))
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Oh Marybe, wish I could be around to give you a big hug and take you out for coffee to calm your nerves. Will check in later to see is you have more news.
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Was hoping to have an update on your appointment Marybe!!??
Ladies, my sister has been creating a website for a woman who wants to investigate current issues with breast cancer. Please take a read and let me know so I can pass on feedback to her:
http://www.theseventhwoman.org/
Thanks!
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barb - I read the home page of your sister's website. I am not sayinf that it is not a good site, just that it would not appeal to me.
It is just me but if I were interested in investigating these issues I wouldn't have gotten past the first paragraph. Not that I don't think she does not have a valid concern, I think she does. When I research an issue I look for unbiased information. I want to make up my own mind and want to base my decision on unbiased information. To someone like me with a "just give me the facts" kind of mind, her site reads like a recruitment poster for people of her own opinion.
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{{{{{{{{{{Marybe}}}}}}}}}} I am so sorry to hear all of this. There is a new treatment for liver mets here at Duke. They send radiation ''seeds'' directly into the leasons and they have had some really good success with it, I don't exactly what they call it, but I am sure we could find out more, if you think it might be an option for you. Take care of yourself and remember you are in my prayers my friend.
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Hi Judylynn, welcome! Pull up a chair, grab a cuppa and join in. Support is always a good thing and I hope you are recovering well from your treatment.
Marybe, oh my! The scans don't sound too good at all, but I hope your onc has been able to put your mind at ease a little by a good clear, concise explanation of what is seen and a firm plan as to which path to take treatment wise. I'm praying for you and sending loving (((((((hugs))))))) of comfort.
Sorry girls if I haven't been around a lot these last couple of weeks but I have been flat out........Mareike (DD2) is recovering well from her op and is already champing at the bit to get back to work.......she is such a bad patient as she has no patience.....lol....I'm glad it's her BF who has to cope with this phase of her healing. Easter preparations are coming along......half the house has been cleaned to within an inch of it's life and the chocolate Easter treats have been made and the fruit sweets also. I need to go to the Butcher shortly and get my meat and eggs and then finish cleaning my kitchen after the mess I made yesterday...........I had chocolate and powdered sugar everywhere and I think I missed a few places when I was tidying so I could cook dinner last night........DH has been warned not to eat the chocolates or else!!!! All good things come to those who wait, I told him and of course he just laughed at me.......as he usually does......lol
Just in case I don't get a chance to post over the Easter break as I have the family coming and my house is going to be full to busting, I want to wish each and every one of you a Happy Easter and hope for you all, a new beginning.
Peace, strength, love n hugs. Chrissy
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Oh, thank you so much for all those hugs and prayers. He says I should not worry about the place in my skull....he said it is bone, not brain and since the bone mets are unchanged and under control there is no reason to think this isn't either....I said, but they never mentioned it before and he said that is true, but in looking back I guess the last scan of my head was in 2008 when I had those TIAs so who knows when this showed up. I asked about those ischemic things and he said it shows narrowing of the blood vessels and I asked Does that mean I have Alzheimer's and he said no, he would imagine most people my age have the exact same changes....so chalk another one up to age. Now the liver....he's a lot more concerned about it and said we need to go after the mets with something that is going to knock them back so of course that is chemo and the one he would like to put me on is Halaven.....he said they have been having excellent results with it. Anyone know that one?....it is also says the generic name is eribulin. You get it once a week for two weeks, then you have a week off an it goes like that in three week cycles. The main SEs are hair loss, weakness or tiredness, nausea and constipation....I went CONSTIPATION! I have been constipated for 8 months now. He told me neuropathy is not a SE but on the paper he gave me it says it can cause it in the hands and feet and to report it immediately,also report fever, chills and all that other stuff they always warn you about. He said I would get a nuelastin shot each time since it normally knocks the white count way down. And he wants to start next Wed.....I said Great, I am getting my hair cut on Tues....guess it will be my last for awhile, but I hope I still have hair on the 7th since I am going to a wedding. Then back in the treatment room because I did still get my xgeva shot today the women are saying oh, you can get a cute wig and I said I had a cute wig and I want no more wigs and this time it is going to be strictly scarves and bandanas......I HATED wearing a wig. Actually when I stop to think about it, I have hated a lot of things....Abraxane, Avastin, lots of things. He told me that this is going to be a new ballgame....that I am used to getting my treatment and then going off to work or wherever and have not really been affected to much by cancer, but he thinks this treatment is going to make an impact on my lifestyle and he thinks it would be a good time to check out disability and that I would have no problem getting it and they could help with the paperwork and I said I know that I checked it out two years ago, but I like to work.....and that was when I cried. It is not making the money that matters (although it is nice), it's the fact I am doing a normal thing. I was thinking today when I was seeing patients and they were asking how are you and I would say Oh, I am just fine and I was joking with them about things, when I am at work, It is almost like I have a role in a play or something....I am not thinking about cancer at all. It isn't denial, but I am just not thinking about cancer and I really like working with people and just can't imagine being so tired I could not go in to work. He's right, I have been very fortunate. But you know he could be wrong....I worked when I was on Abraxane and Avastin and I didn't exactly feel great so maybe I can still do it. However both bosses are being very understanding...the one said he felt like he had been kicked in the stomach when I told him. Dr Cody said something using the word battle and I said I hate that word, hate the way they talk about the fight or the battle and he said well, actually chemo is the battle part and that the cancer is me....Does that make sense or did I say it wrong. I asked him if he now thinks my tumor markers are more accurate than he was thinking before and he says well, he never likes to see them go up, but you can't determine is a treatment is working just on them alone. I got another hug today so I don't think he's a cold fish, just always acts like the professional he is. As usual I forgot to ask things and I am not entirely sure I want to do this particular treatment since the onco at MDA thinks I should try xeloda so I called as soon as I got out of there and set up an appt just for a cons to talk to him again tomorrow and am taking Tim with me....this will be a first. He asked me today Is your husband aware of what is going on with you? and I said Oh, he's not aware of much, but he does know I have cancer if that's what you mean, but he other day he didn't even remember I had a bone scan. Tim wanted to know if I was going to be on this long term so I told him to ask him that tomorrow. I am once again taking a list....did today, but didn't have everything on it. Oh, and I told him No matter what, I have to go to MO the end of Sept, I HAVE to do that because I have a lot of friends coming to visit at my Uncle Bill's....he said that is a long way off and we can work around it. Jeeze, I hope this treatment doesn't make me totally pooped if I do it. I know I am going to do something, have to do something, but I am not sure if I am going to do this one since he did say there were several options. Does anyone know Halaven or someone who has done it? My mother lost her hair twice so I can do it also.....but I hope it doesn' t mean my eyelashes again also, but I know it does. If I have problems with how they grow now, how will they be after a 2nd loss......but there could be the possibility my hair won't ever come back....he said he is not discounting that as a possibility. I am starting to ramble....just wanted to tell you what the onco had to say. It is so strange because I look so healthy and feel good.
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Gentle Hugs ((((( marybe ))))).
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Oh you know I am having my left cataract done this Friday and the Rt is scheduled for next Friday....I myself am thinking it might be smart to start the chemo after they are both done especially if I would get nausea from the chemo since you aren't supposed to bend over and if am puking, I would hate to pop out a lens or something....just a cheery little thought that popped into my head. Oh and guess how they help combat nausea....STEROIDS!....I screamed it out just like that and added an OH NO!!
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Oh Marybe on one hand it was good news about your head and on the other bad news about your liver........Oh what a pain this cancer is!!!.......The is a thread on BCO about Halaven I do remember seeing it some time ago but I don't know much else about it. Good luck with the appt. at MDA and I do hope you get some answers you are happy with. More ((((((hugs)))))) just 'cos you need 'em.
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Happy Cancerversay 3jays!!!!!!! and Happy Wedding Anniversary as well!!!!!!! Yay!!!!! WooooHoooo! Celebration yeah c'mon!!!!!!
Love n hugs. Chrissy
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