Can we have a forum for "older" people with bc?
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Thanks Chevyboy, & Jackie!
I had a surgical menopause by hysterectomy in my mid 30s and went through an awful mental crazy time until I discovered a topical wild yam cream natural progesterone. I was afraid to take estrogen because of the cancer warnings that just came out about then, so I didn't. Anyway the cream worked wonders on the mental & physical results of having no estrogen production and I was using it right up until my diagnosis last November. My biggest fear concerning going on the hormone blocker therapy was the return of those terrible not-myself symptoms...and it happened. I know how bad it can get and empathize with those who can't stand it anymore. Just hoping another med will work for me to keep cancer at bay - but not holding my breath because its function will be the same. At this point I wish I could go back to last fall and this be just a bad nightmare. But I will cope with God's help. Could always be worse. :O)
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Ade, that is the spirit. One foot in front of the other. I think the majority of all of us here had many a sort of " why me " periods and somehow wondered why we had especially it seemed been targeted. Well, that is the way it is with the equal opportunity diseases. Just take heart that no one ( if it is meant to be ) is spared. Many have eaten right, watched any medications, exercised, got plenty of sleep and made time for play too -- those like me who weren't particularly watchful or very health conscious, we all got it dumped in our lap. Many times it was really lousy timing and felt worse in that we had so many yrs. of good mammograms etc. we thought we had snuck in under the wire.
Although it sounds like I'm a bit touched and though I'd have never believed it, I do have to credit my diagnosis with waking me up, and helping with something of an attitude adjustment. I had become a bit complacent with life --- doing a little too much existing and falling out of tune with all the beautiful gifts that are a part of this Earth along with us. Now silly things amaze all over again. I can marvel at the bark on a tree or a huge amt. of ants in one place scurrying around carrying things to and fro, or pretty white billowy clouds congregating in the sky above me. I can enjoy a conversation with friends, or get lost in a good book. It is almost hard to believe that I spent who really knows for sure just how long, just putting one foot in front of the other and just getting by.
So, I am grateful everyday for what I was passing up that has been returned to me. There is a quote ( and I put in a quote here almost every day ) that says something to the effect, " I didn't say it would be easy, I said it would be worth it ". Maybe life hands us lemons some days, but somewhere along the way we will learn to make good ole' lemonade.
Hope you will come back and visit with us often.
Jackie
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Chevy -- looking for my iron skillet as we speak. I do sort of think some cars could get a little sludgy -- and I think catalytic converters made some issues and even maybe some of the cars with computers doing a lot now get funny --- so I don't always think it is a bad thing to rev it up just a little now and then, but I think my 50 an hour on the old highway is good enough. You know what they say --- you shouldn't drive any faster than your guardian angel can fly and so far she hasn't told me just how fast that is.
Anyway, back tomorrow --- but maybe late.
See you all then.
Jackie
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Our road is 45, then turns into 55, so I do get a little speed in. they are still trying to figure out whats wrong. The start button stayed green and the engine had a high pitched hum/whine for an hour or more after I tried to turn it off! Who knows.
Been concerned about the possibility of post surgery diarrhea, am schedualed for the gall bladder Tues. Have had several people warn me about it. After dealing with that for a long time and being better on Gluten free, im scared of having that as a SE. Old age is such fun!
Ade, I'm on Arimidex , but almost decided to quit in the befginning. MOstly cuz of the worsening of arthritis. Only have a year to go!
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Welcome, Ade. Before you give up on aromatase inhibitors, try two steps. First, try a different manufacturer of generic letrozole (nobody can afford brand name Femara (Novartis) any more because no Medicare Part D will cover it). They don't tell you this--but generic medications only have to contain 75% of the dose of the active ingredient in the original patented drug--and the rest are various binders, fillers, dyes, and coatings. One maker's formulation might be easier to tolerate than another. The version of letrozole with the shortest inactive ingredient list is Roxane (Boehringer Ingleheim), next is the brand name Femara ($2700 for 3 mos. in the US, $588 online from Novartis UK in Canada--so skip that), then Teva. Most people report mild if any side effects from the Roxane, then Femara, then Teva. (Some tolerate Teva's letrozole better than Femara). The versions reporting the most problems are made by Sun and Accord. Ask around at the preferred pharmacies in your Part D plan's list and ask if they can order you the Roxane or Teva versions.
If they can't, or if you've tried every letrozole (except Femara--and if you can afford those prices you can probably afford hire someone to have your cancer and take the drug for you), then on to step 2: ask your doctor to try you on anastrozole (Arimidex, slightly less outrageous for the brand name version than is Femara)--and if at first you don't succeed, go back to step 1 and shop around for the generic that you tolerate best. If those are unbearable, ask for exemestane (aromasin). Some women who can't tolerate the "ozoles" do better on exemestane, since even though it is an aromatase inhibitor it is non-steroidal in action. (Not the kind of "steroidal" you think of when you hear "cortisone," "prednisone," "dexamethasone" or "testosterone"). Again, go through the various generics until you find one you can both afford and tolerate. If all those fail, talk to your oncologist and see if tamoxifen will work (before AIs were discovered, all women with hormone+ bc were put on tamoxifen--bear in mind that it has its own risks, interactions and side effects). If you can't (or shouldn't, given other health issues) tolerate endocrine therapy (or are not willing to give up quality for sheer quantity of life), discuss what's most important to you with your oncologist. You are not legally bound to follow your doctors' recommendation. Only you know what is most important to you.
Carole, Gordy is unfazed by rain or heat when it comes to festivals. His first Jazz Fest was in downpours so heavy that the Fairgrounds racetrack was turned into shoe-sucking mud that would have made Woodstock jealous. His second was 98F and so muggy we both got heat exhaustion--even Ray Charles cut his set in half. And he's weathered triple-digit temps at Lollapalooza. (He draws the line at Bonnaroo and Coachella).
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Bonnets... before I took my car into a dealer, I had that same problem! Sometimes it would stay "on"... I mean some sort of "fan" would keep running after I turned it off... I had to start it again, then turn it off once more, and it quit.
My Nephew, who has one of those hand-held gadgets that "diagnoses" engine problems, would give him "codes" as what was wrong, but he didn't know the codes! I gave up on him trying to help. I took it to a dealer... instead of a garage to have it checked. We know those mechanics are certified, where auto-repair businesses can hire anyone they like...
Maybe take it to a dealer, if you haven't tried that? Also... sometimes the "regulator" has problems and will drain a battery...
Every woman should have a TV or Computer repairman, a mechanic, a Plumber, in the family, along with a Doctor as a Husband..
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Chevy
Mitsi is sitting at the dealer now! Hopefully today they will figure it out. It's not just the battery, they guessed, as it was new a couple of months ago and this is the second time it has done this. Last time we replaced the battery. Time will tell. Dont want to have to keep replacing the battery every couple of months!
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ChiSandy you're a wealth of information and I really appreciate it! Having just started down this road the first of this year I have a lot to learn. After my birthday Tuesday I can get signed up for Medicare part D. That whole Medicare thing is new too. My friend here changed from Letrozole to Aromasin and that seems to be working fine with her so I will ask Thursday at my appointment about that. I guess my issue is that if I am completely depleted of these hormones will I have those terrible menopause symptoms return. Having gone off the Letrozole 3 weeks ago I am doing very well except for the fatigue which is bearable - unlike the extreme depression that I CAN'T live with and DON'T wish to start an antidepressant. I wasn't suicidal but didn't mind at all if I died! I DON'T want that to return EVER again so this whole treatment scares me. I have a strong faith in God and I believed even HE was against me at that time. I never ever want to got there again. I have no choice but to try a new med and hope for the best - or do nothing and hope the cancer won't return. I don't know the stats on that but would like to. Anyway thank you ChiSandy.
YAAY bonnets - only one more year to go! Thanks for the encouragement! Praying your GB surgery is a piece of cake with no problems & swift healing.
Jackie, my aunt had a message posted above her kitchen sink that read "FAIR IS FOR GAMES". She was prone to severe depression. I really haven't had a 'why me' questioning or pity party but I do wish I could go back to being "normal" again. Am debating a DEIP Flap reconstruction but wow the incisions! (Could sure use the tummy tuck part though!)
) Yes I will put one foot in front of the other, trust God, and see where I land. Life IS an adventure - I just prefer to watch it from a sandy beach gazing at the blue ocean. :OP I shall bloom where I'm planted.0 -
Mornin all,
Ade, welcome to our group. As you already know, there is a wealth of good info on here- not only cancer-related, but on cars, jazz fests, and weather, just to name a few. We also gather just to chat about whatever is on our minds, or share our daily lives, which for some is traveling, others cooking, bird watching, movie reviews, our furry family members, etc. We try to avoid politics and religion. I should say we do mention the political antics of some candidates, but don't voice our choices of candidates or try to persuade others and, as well, we do talk about spiritual feelings, but not specific religions. Please pop on often, there is always someone hear, talking about something and there are always fellow BC survivors to listen to your issues, offering support and understanding without judging. We have all been though rough times, whether it be cancer or a totally unrelated topic.
We had a bit of a scare Wed. My DS called to say he was on the way to the Dr to meet his 32 week pregnant wife- she was bleeding. They had gone through two miscarriages before having their first daughter almost three years ago. About an hour later, his wife texted that everything was fine. Not enough info for me. So I waited for my son's call. He said they did all the tests they could without getting invasive or possibly damaging. They did a sonogram, watched the baby moving, measured the amount of amniotic fluid, etc. The doctor said everything looked great, and she could not see anything to indicate any need for more tests. She said she had no idea why Anna had bled, but says it happens in 1 out of every 25 pregnancies or so, and there are no more issues with the baby or delivery than with mothers that don't experience bleeding. She suggested that Anna take it easy this last few weeks, which for Anna, automatically signaled bed rest, and the Dr said "No, I mean if you normally walk two miles a day, cut back to one or one and a half. Don't increase anything in your workouts, and maybe lower the number of reps a little. Anna is exercise addicted. But she did say, if she starts bleeding again, and has any contractions with it, or doesn't feel the baby moving, etc, to go immediately to the ER.
Meanwhile, the bAby I lef behind in Fl celebraTed her one month birthdAy and is starting to smile. And my firsT grandson celebrated his 17th birthday yesterdaY. He asked if I would get him a suit for his uncle's wedding, because all the "men" will be in suits. How do you say no to that. Especially since he is a Jr. In HS, taking all college level courses and pulling A's in every one. So, tomorrow we go looking for a suit.
Have a great weekend,Anne
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Anne! I remember "spotting" before Daughter #1 was born.... I was so scared, but old Dr. Brown, said that it was probably nothing, and to just keep an eye on it...
About Tamoxifen.... I know we were talking about that.... Am I wrong, in thinking that it doesn't block the estrogen, like some of the Als do.... but instead, binds any cancer cells, so they do not get to the estrogen? I haven't taken a thing since I stopped the Tamoxifen.... never had hot flashes, even after I was old as dirt... Never knew when I went through the "change"..... I know I was lucky.... I took "the pill" since 1964.... and had a hysterectomy when I was about 45.... because I thought that would stop the periods.... It did THAT, but then I started having severe skin rashes, welts, from stopping the pill!
Finally after about 3 years of trying EVERYthing, I was put back on a low-dose Premarin....and the skin problems stopped after 3 months. I took it until I was about 62, with no problems. I KNOW Estrogen is supposed to cause breast cancer, I have heard, but like my Mom, SHE never took the the pill, nor estrogen, and did have breast cancer.... So no-one can say WHAT will cause our BC.... Just our cells go nuts, and something happens.
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Got the car back, they cudn't find anything wrong, at the dealership! If It happens again, this is the second time, DH says we get a new car!
Contemplating canceling the gall bladder surgery. Can't face the possibility of living with diarrhea again, now that gluten free has helped my IBS. Don't want to be afraid to leave the house. Only thing that makes me hesitate is I have a polyp, which can lead to cancer , as with bowel ones. The GB itself isnt causing any problems since the beginning of the month. EEny , meeny , miney mo!
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I don't blame you guys....! We can only take so much! There IS something wrong somewhere, and unless they find it, you will always have the same worry.... See about getting a "car fax" report before you buy a used car.... No problems with a new car, but there are so many now, that are getting "recalls" about one thing or another! But the dealer pays for those repairs!
I know one thing.... whenever I need my oil & filter changed, I will take it back to that dealer... I trusted them.... And it isn't that much more than from those "faster" advertised places.
Can they treat your "polyp" any other way? I'm glad the GB problem is better!
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bonnets, not to start trouble but my Dh has G.E.R.D. and has had some G. bladder issues, but no one has told him to "ditch" it. To be fair, the subject did come up, but the Dr.'s chose not to follow through with it. So, ( and I'm certainly not a Dr. ) unless the Dr. can give you a super good WHY removal should happen I'd be leaning on the side of trying to keep it longer. That is just me though.
Now I'm crossing my fingers with my car. So far it runs perfectly well --- only had that issue of it locking when I don't want it too. I have to go back to the dealership later ( some time in the next few days ) and pick up the little btl. of paint they got for me. so will ask them then --- why the car would do what it did and to help me set it up for recording my mileage etc. See -- you know me and computers don't get along well and many functions on this newer Chevy is operated through a computer. Just more things to go wrong in a way but I'll try to make it through.
Jackie
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The differences in human life depend, for the most part, not on what people do, but upon the meaning and purpose of their acts. All are born, all die, all lose their loved ones, nearly all marry and nearly all work, but the significance of these acts may vary enormously. The same physical act may be in one situation vulgar and in another holy. The same work may be elevating or degrading. The major question is not "What act do I perform?" but "In what frame do I put it?" Wisdom about life consists in taking the inevitable ventures which are the very stuff of common existence, and glorifying them.
Elton Trueblood0 -
Jackie, I don't remember if you have the owner's manual for your car or not...
http://www.chevrolet.com/content/dam/Chevrolet/nor...
But I can set mileage with the lever on the left of the steering wheel.... It should have different "trips" for you, and gives you a lot more information with the "menu" also.... Even gives tire pressure, and shows which tires are "low"... Plus the gas mileage, etc.....
Also when I park my car in the garage, I don't lock it.... and it stays unlocked until I get back in, and start it, and shift it into gear. It shouldn't lock by itself.... ever. Even when we are at the car-wash, I take the key out, set it on the seat, and we both wash my car..... If you leave the key in the starter, the bell will ring when you open the car door.... You have to remove the key to shut that bell off....
Write down all the questions you have about your car....
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Been reading research on gallbladder polyps. It seems <5mm, mine is 4mm, there rarely if ever are cancerous, and sometimes just turn out to be a stone! I haven't had any symptoms since the first of the month from my stones, and the prospect of possibly having to deal with severe diarrhea, after I have gotten my long standing problems with IBSD calmed down is just too scary! Always being afraid to leave the house is no way to live. So I may call surgeon Monday and cancel Tuesdays surgery.Gastro guy has said the surgery is up to me, didn't tell me I need to have it. So that's my story, and I think I'm sticking to it.
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Ade, glad to be of help. The depression symptoms you describe were exactly what I had with post-partum depression 31 years ago--I didn't want to commit suicide, but Inremember looking out the window and thinking "if a wrecking ball were to come through and suddenly take me out, maybe my baby could get a better mother." I got help, thank God. There is no dishonor in seeing a shrink and taking antidepressants. I still do both!
AIs don't block estrogen. They actually prevent your adrenals and fat cells for making it, by inactivating the enzyme necessary to make estrogen. Tamoxifen and raloxifene work by a mechanism whose biochemical specifics are still not known (there's a pathway there but it isn't fully understood) which sort of "clogs" the estrogen receptors on tumor cells so they can't take in the estrogen they need to grow and divide. Think of aromatase inhibitors as saboteurs at the Twinkie factory, stealing the sugar from the pantry and throwing it in the river; and of tamoxifen as your jaws being wired shut so you can't eat the Twinkies
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Happy to find this discussion group- seven yrs ago had my first BC diagnosis- went through lumpectomy and radiation without any real problems/ in October was diagnosed with another type of BC in other breast/ was I ever surprised- thought I would be ok since I had hysterectomy and my cancer was receptor positive- with this second bout of BC had lumpectomy and radiation and are on Arimidex- developed painful Seroma and arthritis worsened/ I'm miserable- can't switch from Arithmidex because of drug interaction with other meds I need to take for other medical problems- had Seroma drained to find it came back even larger- any advice for painful breasts and arthritis would be most appreciated- feeling down and out/ so happy I found this group for "older" women like me who can relate to one another- by the way, I never felt older until I got this second diagnosii
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Morning Nanagirl! What was/is your diagnosis? I only know about a Seroma, since I had one after my Lumpectomy also... Everyone said it would gradually go away, and it did! Yes, it IS painful, but filled with fluid, and should be absorbed into your body. I didn't have mine drained.... but it DOES shrink, and you can still see where it was on a mammogram, but it is not filled with fluid.... just an empty pocket.
I'm thinking your Arimidex is partly responsible for your flare-up of arthritis! Does your Doctor know this? SOMEtimes we just can't take all the side-effects... Others can tolerate it good, but maybe have no under-lying problem LIKE arthritis. Talk to your team.... Tell them they are all nuts if they think you can stay on something that hurts you all over....See if they will work with you....
Don't go feeling all down-and-out.... we are always here.... just talk to us.... maybe if we can't help what hurts you, we can fix your car!
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Thank you Chevyboy for responding/ I was first diagnosed with DCIS and now with ILC- both early stage so I was hopeful- now that I have pain it's a daily reminder that I had/have BC- am confused and am waiting for it to come back- any suggestions for helping me to put it behind would be appreciate
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A greater poverty than that caused by lack of money is the poverty of unawareness.Men and women go about the world unaware of the beauty, the goodness, and the glories in it.Their souls are poor.It is better to have a poor pocketbook than to suffer from a poor soul. - Jerry Fleishman
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Nanagirl, so sorry you're having all this misery, thanks to bc and treatment. You may not be able to tolerate arimidex. That would not be uncommon. Discuss the situation with your bc dr. or drs. In some cases the side effects lessen. In some cases, the se's come and go or get worse. There's no definite pattern. Sure hope you get to feeling better.
I slept late and am having my first cup of coffee. I plan to go to the gym this morning for the first time this week, thanks to being ill and then recovering from the intestinal virus. This afternoon I will go to visit my mother at the nursing/rehab facility.
Bonnets, I agree with your decision about the GB surgery. You can always reschedule if the need arises.
Happy Saturday.
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Nanagirl, WELCOME and we are glad you found us. All of us here are young but have had that nasty interference called a cancer dx. I took Arimidex for 5 yrs. and did ok with it. Had a few issues when I was switched to generic Arimidex which is Anastrozole for about three months. So --- I was wondering how long you have been on your Arimidex. Sometimes after a while, our bodies seem to adjust to this medication. Sometimes some adjustments can be made. Maybe a better time of day when you take it or something.
That said, I do think a lot of Dr.'s just don't do a lot of research on some of the se's that come with these drugs for some patients. We are all different so our response can be quite different too. It may take some trial and error, but you are ultimately in charge. I hope either time or some adjustments can make a tolerable difference for you.
ChiSandy, I got a big kick out of your description of how some of the drugs we use work. You are very knowledgeable about them.
Raining out this morning, finally. We knew it was coming -- just not quite when but was cloudy most of the day yesterday. It will be cooler for a while and then re-warm as the rains slide out of here.
Going to work later. Don't know if I mentioned here that my little friend is back in the hospital with a UTI . Mainly just age related. So, today is the 6th. day. She will I think ( when her Dr. decides ) be transferred back to the same nursing home/rehab wing where she was the first time around. I do get more work as it is usually daily until she is back home. Good for me, bur I'd much rather she be ok.
Jackie
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Mornin all
Welcome Nana. What type surgery did you have? I had a BMX, with no recon. About a year later, I had a second surgery to remove the pockets under my arms. They were so painful, I had to wear a sports bra to bed at night to keep them compressed. I am not sure if they would be classified as seromas. I developed lymphedema after surgery, and I don't know the difference between that and seromas.
Reading about the car issues, I couldn't resist sharing this. I have 2 cars- one in Fl, one in Ga. I bought them in 2013 and I am now kicking myself for buying two different makes and models. Each time I go from one car to the other, I have to relearn how to use the radio, the GPS, etc. And to make things even more confusing I switched them around last Thanksgiving. Right before I switched them I did something with the Bluetooth phone connection in one car that changed the voice to French. I know sort of know what she is saying but she doesn't understand my directions, and keeps asking me to respond in French. I have no idea what I did or how to fix it. My SIL and I sat in that car for over an hour yesterday, with the owners manual. We tried everything. I came in and went to the manufacturers website to see if the had a support or help tab. The only thing they had was an email address. So I sent off a tense email, telling them I needed end help now! I went back outside to tell my SIL that I had sent an email to Rosen Electronics because the website didn't have a phone number. He has a way of looking letting me know I'm confusing him. Then he said "Why did you send an email to Rosen? This is a UNAVI system." I knew that, I had the UNAVI manual in my hands. Can I blame it on chemo brain two years After chemo?
Everything else seems to be okay otherwise. One of my long-time friendsalso has a daughter living in GA. The girls were best friends starting in middle school. Anyway, Jo texted me Thurs, asking when I was going to be in GA again, she was coming up yesterday. Since I am already here, we will meet this week for either lunch or dinner and a movie.
Anne
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Hi Anne- I had lumpectomy both times/ it was suggested that I have a double mastectomy with reconstruction but I didn't want to go through that and thought I could decide at a later time to have it done- I can't imagine going through reconstruction now/ I'm close to 68 and thought about a mastectomy without reconstruction but read about other issues I can have- all genetic testing I had came out negitive (25 genes) so I guess I'm just taking the less extreme approach/ I'm on generic Arimidex so if SE continue thinking about possibility of trying another manufacturer but I guess the SE are showing me that the drug is in my system - maybe I'll be one of the women whose SE decrease over time- as far as cars go I drive older models so I'm not confused going from one to another anymore/ I hold on to cars for yrs- couldn't imagine going keyless- have a nice da
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Nanagirl......Sorry about the pain.... I wouldn't take any of those strong prescribed pain meds, unless you can't stand it... Take something like Aleve.... That's what I did...
Nah, don't wait for it to come back.... You COULD get something worse... I fell and broke my hip.... lost my hearing.... and I'm still here! Do something everyday, to take your mind off of yourself.... I mean go for a walk.... Go to Starbucks.... find someone to have lunch with, or go to a movie.... Don't let this run your life....
Jackie says we are all "young".... Hah! If 78 is young, then yes I am! But I sometimes don't "FEEL" like it...
Yes.... Arimidex worked for Jackie, but sometimes, after putting up with barely being able to walk, it might not be for you. Carole is right.... You don't have to take something that causes you to be miserable....
YOU decide what is best for you.... I mean people take those meds all the time, and either don't get cancer, or they do.... I had my diagnosis when I was 72.... about 6 years ago! And I only took Tamoxifen for 1 1/2 years... stopped after it caused a small stroke and I lost most of my hearing. BUT I didn't get cancer again.... after stopping Tamoxifen.
So see? Now I'm out in my gardens, or shopping, or just doing things we WANT to do! Our life-style changes.... like our eating habits.... like what we don't WANT to do, compared to when we were younger. We can say"no" when we don't feel like doing something....
But we go on! Life could be so much worse.... So enjoy ever minute of every day! Even if you have temporarily lost your "mo-jo"..... So now I have to go up-stairs to finish the room up there, for when our Grandsons come stay with us! Make the pull-out sofa, fix a snack-tray, and run the vacuum! YOU know.... important things!
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Chevyboy thank you for helping me put things in perspective - I need to think straight again-
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Chevy, I love your spirit. Nothing gets you down for very long.
My workout at the gym was short. As in nonexistent. There was NO parking space!! Cars were parked up and down the street leading to the parking lot. In addition to T-Ball games, the YMCA was having a garage sale. I will have to go earlier on a Saturday and beat out all those parents with kids.
I came back home and looked up a pancake recipe and made pancakes for breakfast. Now I'm getting laundry done. It's a muggy day with air so heavy you can scoop it with your hand when you walk outside. Time to leave Louisiana and go to MN.
Hope the rest of you are enjoying crisp air.
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