MIDDLE-AGED WOMEN 40-60ish

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2015

    I need some help from someone who has or is in my shoes. I have had 3 infusions of Zometa in the last 18 months. All were very painful for several weeks. The last one made my jaw and teeth hurt for over a month. I went to the dentist last week because I notice my teeth were shifting. X-rays revealed major bone loss. He said he can not save one because there is not enough bone to even cap it. I am so upset. I really like having teeth. Is there another drug like Zometa without this wonderful side effect. Seems I always get the weird shit.

    On a brighter note my wonderful hubby took me away over the weekend for my birthday. Today we went with my son and daughter in law for their baby's ultra sound. I think we all agree that it is a boy even though the tech was told not to tell. We could pretty much see some boy parts.


    Hope everyone is doing ok.


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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited February 2015

    D-rose, Zometa was never my bag (chemo bag that is.) What a distressing SE! Is a bone graft even possible? I know they do that for jaws, but it might just be prior to getting an implant tooth. Don't know if you have had a bone density scan recently, but in light of this news, maybe you want to see how the rest of your skeleton is faring?

    --------------------------------------------

    I won't know how I am doing for a few more days, having just had my MO visit today. My blood looked very juicy, like strawberry nectar, and there is just no way that something so luscious and pretty could have an elevated TM, is there? Really can't say I will have any weekend anxiety while waiting to hear results. I think they will be fine

    The funny thing is that from the time I set foot in the MO;s office, I kind of felt some PTSD kick in. Kind of felt some extra adrenalin coursing thru' my veins and I had to suppress an urge to just RUN outta the place. Not that I would, but I could seriously feel the desire to flee.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2015

    Somehting similar is happening to me elimar. where, i feel it in my body as something is wrong, and when i am near anyplace that might find it, i get a weird rush of blood in my veins, like my very blood is scared. i felt like it was alien blood, protecting itself from discovery.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2015

    Elimar- seeing a specialist next month that does bone grafting. Does not sound like fun. I will be skipping the next infusion that I am scheduled for next month. Hope all your blood work s fine.

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  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    Dianarose, blech! I am so sorry. I fear the same thing, which is why I have refused zometa and prolia so far. Do you have bone mets? With me they want to do it to treat my osteopenia/osteoporosis, and because they think it may prevent bone mets.

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  • staynsane
    staynsane Member Posts: 213
    edited February 2015

    Tomboy- Your concern about forgetfulness is really hitting home; my husband swears he has early Alzheimer's. He IS becoming more forgetful: lost keys are almost a daily occurrence, food left out on the counter that should be refrigerated, lack of ability to come up with words, not shutting off the gas cooktop (this one freaks me out), etc. But when he was "tested" he was told that he was fine. The test was to recall three words that were spoken a couple of minutes earlier in a conversation. He remembered two, and struggled with the third, but when prompted with clues remembered it. So he was told he was just suffering from normal aging.

    This brings up the need to really be your own advocate and press for attention for what concerns you. JustAmy- If I were in the kind of pain you described, I would not have left that doctor's office without a script. I would have demanded that the doctor call one in (or the on call doctor or whomever)! I'm sure there was someone responsible for patient care available, and if not then they should be reported.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2015

    Staynsane, that doesn't really sound like a very extensive test, at least in that novel still alice, they did a really very extensive sort of testing. It could be normal aging, but if it is worrying or concerning to your husband, then maybe he could get more extensive testing. Does it agitate him when it happens? In the book anyway, spposedly they test for a certain gene now. I don't know if thats true in real life...haven't looked it up yet, I better b4 i forget! Hoping that he is fine, and me too!

    DianaRose, I am so sorry that that is happening to you.I hope they caught it fast, and can fix you, with not too much pain or anguish or trouble. I have been getting prolia shots for the same length of time as you, and that is one of the reasons that I am thinking about switching back to tamoxifen, except then I worry about clots. And I already have fibroids, and I don't want anymore cancer. I am so sick of it all. But that is awful, and I am so sorry that it happened to you. I wonder if the bone pain that you experienced was a major clue, that it wasn't the right thing for you? I wish they knew, and it could be avoided.

    Elimar, hoping your juicy blood is just that, sweet and good.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2015

    Momine-they are giving it to me to prevent bone mets.

    Tomboy-I fear if I continue it will get worse. No good choices here. All sucks.

    On a positive note- my kids great grandmother had breast cancer in her 70's. She just celebrated her 104th Birthday. She is one tough lady.


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  • staynsane
    staynsane Member Posts: 213
    edited February 2015

    Tomboy- I agree that my husband's initial Altzheimer's evaluation was laughable. It just cements the fact that if you suspect something is wrong/changing you really have to push to be thoroughly evaluated. He got the "there, there, you're fine" treatment. In the meantime, he still leaves the car door open, gas barbecue and stovetop "on" and forgets entire conversations we have. Ok, maybe he just isn't really listening to me, but his forgetfulness really does worry me sometimes when I have to travel. Even with notes that I leave right in front of him, he forgets to give the dogs their meds, or gives them off schedule, or the wrong ones to each dog. I find HIS pills on the floor and counter. I believe Alzheimers is one of the saddest diseases; losing your independence and not knowing loved ones (and realizing that you're losing it) is not easy on anyone. Not saying he has it, hoping he doesn't, but encouraging more thorough evaluation.

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  • staynsane
    staynsane Member Posts: 213
    edited February 2015

    Eli- Header "Cluster-Fork"...you crack me up!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2015

    It is a sad one, and worrisome to their people. It might be a blessing for them, once it gets past a certain point, i don't know. I guess I thought it was something like a return to a more childlike state of being..I hope the scientists figure that one out, just as much as the one we are dealing with.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015

    liking the "cluster fork".

    Alzheimer's is a very sad illness. My friend lost both of her in-laws to it and worries about her husband. Since both of his parents had it, the chances of him getting it are very high. She is definitely keeping an eye on him.

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  • Deborah2012
    Deborah2012 Member Posts: 234
    edited February 2015

    Hey there middies,

    There is some great progress with Alzheimer's: Discover (Science) Magazine, March, 2015 issue:

    Two big developments:

    1. Dr. Rudolph Tanzi @ Harvard was able to grow human brain cells from stem cells, then implant Alzheimer's genes into the neurons. The importance here is that Alzheimer's cells can be grown in a petri dish which is far cheaper and faster than having to do post-mortems on brains to do analysis. According to the article, this advancement is "paradigm shifting".

    2. Dr. Ralph Nixon @ NYU was able to clone a rare protective gene that get this- even someone with two copies of the dreaded APOE4 gene don't seem to get the disease and even if they are in their 80's! The challenge is to learn how the (good) mutant gene works and devise a treatment that replicates the protection the mutant gene affords.

    There are more juicy tidbits in the article by Linda Marsa.

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited March 2015

    Great news!


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  • HomeMom
    HomeMom Member Posts: 1,198
    edited March 2015

    Mel - Both my parents retired from Disney and mom has a silver pass. My kids have been there so many times in their lives they aren't real interested in it anymore. I like to shop in Epcot though on occasion!

    The 500 was actually a lot of fun! It's much better when you are there in person. I did go when I was about 20 years old with my future hubby, but hated it. I'm not a fan, but I was pulling for Jr to win!

    The activities outside the racetrack were interesting too - a couple mobile bars, fan shops, free food, the Clydesdale horses etc.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2015

    Results in. The first leg of my Follow-Up Triathalon (the MO visit) was a success...standard bloodwork unremarkable, TMs lowest of the low and staying the course; and my Vit. D was a respectable 68. (I supplement 5,000 IU somewhat regularly in the Winter, 2,000 IU when I remember it in the summer) My next event will be the CT scan, in a couple weeks. I'm feeling good, training, you know; and, for me, it will not be so much about mets because I just don't think I have any, but rather if my "fatty liver" has slimmed down any? My liver, the only place I seem to have extra poundage these days, did pass the metabolic profile with flying colors so I am anxiously awaiting to see how it is looking these days. Then, the final stage at the end of the month, will be OV with my CRC surgeon (not the robot!) where it is going to get up close and personal, and I don't mean a handshake. We are way past that. In the Baseball terminology of intimate contact, this is not "home base," this is probably more "locker room shower."

    Any-hoo, kind of like having to run the gauntlet all in a month's time. Get it over and done with, at least til my summer event, the Mammo.

    SnS, Alzheimer's (and you gave it the German pronunciation in your spelling!) is no fun and no laughing matter, but some of the daily things that my Grandfather would get into were kind of laughable, even as the person I knew just disappeared slowly. Sorry that, on top of BC, you now will get your "associate's degree" in that dread disease.

    Deb2012, Thanks for sharing the timely info.

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  • Deborah2012
    Deborah2012 Member Posts: 234
    edited March 2015

    Elimar,

    So happy to read about your good diagnostics! It's amazing sometimes to see all the scientific knowledge about procedures, results, and disease that you keep "abreast of".

    I think you merit being given a promotion. HRH (Her Royal Hiney). Your diagnostic results are so good, you may sport a tiara to mark the occasion. Perhaps you can find one on Google images and add it to your photos on this thread. And alert us to when HRH (you) gets to wear it!

    Shoot, you could even buy one and wear it to your OV appointment! Say you've been annointed by your peers and have assumed shall we say..... the throne?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    Deb!!  You are so funny!

    Elimar:  congrats on the good results. 

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  • Momine
    Momine Member Posts: 7,859
    edited March 2015

    Elimar, keep on passing!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2015

    What's OV? Congrats, El, but i did want to MENTION that you said 'winter' and ahem 'summer' 2 times for summer. You might want to edit that before someone sees it and oh wait YOU are the one who doesnt like talking about the weather!!! Altho technically, you only named seasons...PHEW!!! That was close!

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2015

    OV is office visit, Tomboy. Yes, I named a few seasons, referred to in a temporal way, not climatology! Wouldn't it be just like me to break my own rule? But don't think of it as a "no-weather rule," think of it as a "no-weather guideline" (so says the one guiding all to other topics. Ha!)

    Deb2012, HRH? Ahahaha! My hiney has been thru' a lot. It deserves a medal, at least. Tiara? Well I'm intrigued by that look! Probably slip off my little pointed head. Can't get a halo to stay in place either.

    Just in case anyone is wondering...NO, the trauma of my BC is not as fresh in my mind as it once was. That's a good thing really. Honestly, I am not perusing the journal articles as regularly as I once did. I like when someone brings breaking news to the thread, because I don't think I am as "on top of it" as I once tried to be. Things are changing all the time and it won't take long for my knowledge to become outdated, but it is not my goal to rack up a bunch of "continuing ed" hours about all things BC. I will still encourage just about anyone to seek out their own info. from various sources; and the internet is so great for everything from medical journals to woman-to-woman anecdotes. Even the medical community seems to be accepting that this is how we can learn so much about our disease, and sometimes even steer us toward internet resources.

    Knowledge is power. Francis Bacon said that...and who doesn't like bacon?

    image

    Just when you all thought I went off on a tangent...I think the Bacon Tiara brings it back around!!!!

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited March 2015

    Eli aka HRH (Deb you crack me up) - so glad to hear that all is going well for you! At first glance I thought the tiara was perhaps a Cheetos tiara. But bacon, well that is just as good. And wearing the tasty pork product won't contribute to your fatty liver.

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited March 2015

    Eli-Hooray for good results.!And the bacon Tiara!

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  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    Debonthelake -it was so random I landed on your post when I went to this thread. I will be 54 this month, have a son and daughter 24 and almost 26. I am also a mental health professional (for 25 yrs) and in the past 7 yrs have been doing homeless outreach to the seriously mentally ill.  I am getting ready to go through six rounds of chemo spaced three weeks apart. It seems overwhelming now, to think it will be at least 18 weeks before I'm done and may need radiation after. I really don't have a choice about working. I carry the insurance, pay the mortgage, etc..In addition I  love my job and worry they will reassign me to a mindless position in some group home (loved it 20 yrs ago) but not now.  Filing FMLA will keep me employed but I think they could move me to another program.  I work for a CSB, County government.  Would enjoy any tips you may have for getting through this.


     

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  • Loral
    Loral Member Posts: 932
    edited March 2015

    Elimar

    Let's all...

    image

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  • staynsane
    staynsane Member Posts: 213
    edited March 2015

    Eli- You are right; I was emphasizing the guttural, phlegm-laden pronunciation of Alzheimer's...however unintentional. Uh oh....

    Barsco- You too are correct that a bacon tiara would not contribute to Eli's fatty liver. However it just may have her researching fatty follicles for days!

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2015

    DianeDavis, I don't remember a Debonthelake from this thread, but if you did read something here, I bet you came in on a page from long ago, so don't feel slighted if there is no response from the one you wrote to. Chemo IS a long stretch, especially as you are just at the starting gate. Most of us just buck up and forge ahead and once you pass the mid-point, you feel worse from the cumulative effects, but better because you are getting that much closer to the finish line. Hope any changes that take place at the job will be only temporary for you. So not fair when this stupid disease cuts into the work niche that it may have taken years to get to.

    Loral, That cat can really shake a leg. He must smell some bacon sizzling somewhere nearby, (I don't know, but in a certain t.v. commercial, a dog goes bonkers for it!) I need to happy dance for fitness. Finally got out to walk a couple miles this afternoon and I could feel that I was out of shape.


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  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    elimar-It was so thoughtful of you to respond. It's just so encouraging to be in "a room" with women on similar journeys.  thanks!

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited March 2015

    Eli - the crocuses (or is the plural "croci") are beautiful. Can't wait to see them IRL - a sure sign that you know what is on the way.

    Took the dog for a walk today - she loves it when I throw snowballs for her to run and catch. I think I actually saw her laughing when I took my hand out of the snow on this instance to discover one of the "deposits" she has made along the way. Glad I had my mittens on!

     

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited March 2015

    Ewww, Barsco! I've done the same thing! Hooray for mittens and gloves!


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