Can we have a forum for "older" people with bc?

IllinoisLady

Chevy -- your outlook is marvelous. Why we are all so glad you came back.

LPLlibrarygirl

Hello All,

I have been lurking on (and enjoying!) this thread for a year but this is my first time posting. I sometimes post on Starting/Declining Hormone Therapy 2019 and Radiation December 2018 because those women were all going through treatment at the same time I was and it was so helpful and supportive.

I have been taking letrozole so thought I would mention my experience. My MO started me on this particular AI last February. The first 6 months were just fine, but the SEs started shortly after my 6 month checkup. I am currently taking a 4 week break from the medicine in hopes that my body will reset and I can start letrozole again with fewer SEs. My MO told me we can always try a different AI if the side effects bother me too much. I had my first DEXA scan last year and learned that I already have osteopenia and osteoporosis in my hip and lower back. The MO asked me if I wanted to take tamoxifen instead because it is easier on bones. Since I declined to have chemo my recurrence rate is 19% with tamoxifen, but my MO said it would be a little better with good lifestyle habits. She also said that letrozole might give better results than tamoxifen. (My cancer was PR- and there hasn't been as much research about how all the different drugs work with that.) To help my bones, I get an infusion of Zometa twice a year. That drug is supposed to help strengthen bones and even prevent cancer from spreading to them.

My SEs with letrozole have mostly been tolerable. I am dismayed that my cholesterol is going up (in two tests) but I don't need to take anything for that yet. I take Zoloft for depression but I was taking it precancer and don't feel I am worse. The major side effects are extreme fatigue and a lot joint pain and stiffness in my fingers. The most recent SE has been rib pain and that was scary because I immediately figured the cancer had spread. I have mild hot flashes, occasional dry eyes, stiff ankles when I wake up in the morning, occasional leg cramps and sinus headaches when I don't drink enough water.I feel a little better now that I am taking a respite from the drug and we'll see what happens when I go back on it.

As others have wisely said the most helpful thing we can do is talk to our MOs. They have lots of data to share and other helpful suggestions to make sure our QOL is the best it can be. This website is great too! Along with lots of support from BCO sisters I have found helpful articles and information about the latest research. My best wishes for a happy, healthy New Year to all.

IllinoisLady

- LPLlibrarygirl - Welcome. I'm glad you come to our thread as a lurker or poster. There have it seems never been a huge amt. of posters here and should you wish to keep coming I'm sure we would all enjoy your company. After a yr. you know we talk about almost anything. I am not as supportive ( knowledge wise ) as many of the others, but prefer to post a quote daily. That is the way I hope to help because we all have some down times and some inspiration of a quiet kind can do some good once in a while.

I do hope that your small vacation will set you back on track with the Letrozole. Someone ( Wren maybe ? ) mentioned many yrs. ago how treatment was taking place. I recalled this afternoon knowing someone who had a suspicious mammo. At that time ( I think it may have been late 70's or early 80's ) you had your biopsy in the hospital. You were given something ( I think twilight type sedative ) and biopsy done, and then -- if biopsy was positive, you were re-sedated and would wake up minus a breast. I don't think at the time there were any of these 5 or sometimes 10 yrs. of pills we have now in addition to the lumpectomy that makes so much more sense.

After hearing you say ( taking a break was never mentioned when I had my 5 yr. pill ) that you are taking a break for a month to see if se's are curbed, I was thinking for the most part how much better things have become for all of us. Then again, I did not have many issues with my Arimedex/Anastrozole so I don't know if a break was possible then -- but great to hear that it could be a possibly for women so they can continue to seek wellness and end up NED.

Hope your vacation does the trick for you.

MinusTwo

Wren - I don't know how I ever lived without my heated throw. Like Chevy, I have a ton of afghans and throws and lap quilts and etc - but the heated throw is truly heaven.

mac5

Just a question to throw out for discussion...has anyone tried or had any success with acupuncture for SE’s? For either Neulasta or AI’s? My MO has mentioned this as a possibility because I am unable to take anabolic steroids. Even nose spray sets me off.

So when/if I have to accept AI’s for prevention, I’d like to know if there are options

CeliaC

LPLibrarygirl - Some suggestions for SE relief - Dry eyes: Systane Complete Optimal Dry Eye Relief (recommended at my latest eye exam). Do drink lots of water. Joint pain/finger stiffness: see arnica recommendation below. Exercise is also known to help. And another option is "regular" Claritin (NOT the Decongestant one). My MO & BS both recommended a "vacation" and/or switching to a different AI which my help to "reset" the body. I will come back in a few minutes with a reference to some other BCO threads you may find useful.

mac5 - My MO also mentioned acupuncture for relief of SEs. I have not tried it. However, a friend who tried it, said it did provide relief during chemo & AIs. Problem is: most medical plans do not cover it, so it is private pay. For joint aches/pains, I use arnica, which is a homeopathic remedy. Around here Walgreens as well as Whole Foods are the easiest places to find. Comes in "pellets" you dissolve under the tongue & also cream or gel (no smell!).

CeliaC

Refs to other AI threads: For Arimidex (Anastrozole) users, new, past and ongoing and Doing Well on Aromatase Inhibitors

ChiSandy

Judy, that strawberry shortcake has me drooling--even though we just got back from a huge dinner (degustation & wine pairings) at Oceanique. Never been to the Keys, even though for years my BIL had a fishing cottage near Islamorada. (Wilma wiped it out).

I never had a lump. My Stage IA grade 2 ER+/PR+/HER2- IDC was found on an annual screening mammo--I guess if anything gives me the "willies" it's buying new expensive bras: that fateful mammo was two days after I spent a raft on French bras from HerRoom.com and Intimacy Boutique--I figured it had to be karma for my vanity. (In fact, the mammo tech complimented me on my bra). I have since bought new bras with no ill effects; so much for jinxes.

New Year's Day began year 5 on letrozole. I had a very late menopause (55) with no symptoms--my perimenopause was essentially one long two-year painful period punctuated by a few two-week interludes of relief. By contrast, menopause was a breeze--can't even tell you what a hot flash feels like (closest I've come was a nasty burning "flush" after an ill-advised fling with niacin in my late 30s to avoid statins). At first, letrozole gave me night sweats, but except for a slow metabolism, I've been fine (and a low-carb diet seems to have finally gotten me past that metabolic stalemate). My MO would like me to be on it for 7 years, but she concedes most of the benefit occurs in the first 3 years. I went on lifemath.net and found that it is increasing my lifespan by only 180 days. She doesn't do the BCI testing; but seeing as how I'll turn 69 in a couple of weeks I think the boat has sailed. (I was almost 65 at diagnosis). I had a DEXAscan the morning I started radiation, almost 2 months before letrozole; I tested osteopenic. Because of GERD, oral bisphosphonates are a nonstarter for me; and a Zometa infusion knocked me for a loop. When BCBS finally started covering Prolia for postmenopausal bc patients on AI therapy, I took those shots--6 in all. 2 years (3 shots) in, my osteopenia had improved to the point where one measurement was actually normal.

Letrozole is <$9/mo. on my insurance, and I'm not having any side effects, so we'll see this time next year.

Now, I've had to stop calcium because my blood levels of it were borderline-high; but I still take Vit. D3, Mg and Vit. K2. Can't do ballistic exercises (running, jogging, jump rope, impact aerobics) because I have artificial knees (at ages 61 & 62), but walking is okay, as is elliptical, bike or stair-climbing (once I get the hang of the machines--tried rowing but I couldn't get my heart rate into three figures). Can't ride a real bike because my balance sucks. Going back to the gym this weekend for a fitness assessment: having lost 50 lbs I'm still getting used to my "new" body and will need to know how much my back will handle in terms of core work, flexibility, strength training, and (especially, after 2 disastrous falls in 2018) balance exercises. My weight-clinic's NP says I'm less than 10 lbs. from goal, but I might keep going to give me a "cushion" after I switch from low-carb to Mediterranean (the clinic's maintenance plan). Gonna miss red meat & dairy, even though I'll get whole grains and more fruits back. Guess I'll have to do my vacationing in Spain, the Riviera, Portugal, southern Italy, Greece and the Middle East if I want to stay on the dietary straight & narrow.

This is unrelated, but anyone with a Mac notice that typing is becoming a chore, what with some sticky repeating keys and others barely registering? I will look up at the screen sometimes and see three in a row of a certain letter (dang, just happened again) but a recalcitrant Shift key playing havoc with capitalization. Also, the cursor jumps around and inserts letters several lines earlier. Gonna have to bite the bullet and hit the Apple Store to deal with this stupid butterfly keyboard (ca. 2017), but do a backup first.

IllinoisLady

Everybody can be great. . . because anybody can serve.
You don't have to have a college degree to serve. . . .
You only need a heart full of grace. A soul generated by love.

Martin Luther King, Jr.

petite1

Good morning, ladies. I had my annual skin check at the Dermatologist and she found a spot on my arm with the lymph nodes removed. I refused due to my fear of lymphedema. Then she ordered a topical chemotherapy. I am concerned about using it. Anyone have any experience with this type situation? Thanks

Veeder14

Hi petite1,

I’ve had pre cancerous areas on my cancer side arm frozen off by dermatology, with no problem. If I had a skin cancer I would definitely do the treatment, frozen off or topical medication. Skin cancer can spread so you want to get rid of it. Is it a large area on your skin

Beaverntx

petite, DH had a squamous cell carcinoma on his face which was successfully treated with topical chemotherapy several years ago. He had some redness and a little peeling but nothing major and it has returned. My vote is with Veeder, treat that area to get rid of it!

MCBaker

I have to take an extensive walk with the dog this morning to sign us up for classes and shell out 125$, then buy some flea and tick oil, then get some .25$ for laundry money. The workout at 3:00 seems to be working, the trainer seems to think I will get other benefits as I proceed, but right now I want adequate sleep with minimal drugs. I suppose I need more work on right chest and back muscles, eh? Dropped the muscle relaxant last night and slept even a little better. Woke up with a slight headache, will wash sheets today, may even wash pillows. Yesterday I replaced the board that goes between the cushion and the mattress (new mattress) compartment of my love-seat. Will get a routine of doing one thing a day to reduce allergens (de-cluttering the air?).

If it is not one thing , it is another. You guys deal with the side-effects of anti-hormonals, I deal with sleep and morning headaches.

IllinoisLady

petite I agree. However you choose to do it, the cancer needs to come off.

McBaker you remind me of Gilder Radner ( rip ) who said - and it became the title of her book, published posthumously, " It's Always Something ". All here, I'm sure know that she was a regular on SNL for a long time. Married to Gene Wilder who himself was an extremely funny comedian. It is always something for many.

As an aside - I loved Gene Wilder in the movie with Richard Pryor where Gene has to re-make himself into a black person. I don't know if I would laugh as much as I did when it first came out but the title of the movie was Silver Streak.

HikingLady

petite1 I certainly appreciate your worry about this, but maybe there's a solution that solves the skin issue without risking further damage to your lymphatic system. I know nothing about topical chemotherapy, but is this definitely diagnosed, pre-excision? As I understand it, the first step would be a biopsy, perhaps a complete excision at the same time, of your suspicious skin area? If I were in your situation, I'd try to find out whether there's a way to remove the skin thing without further risk to lymphatic system. As a complete non-medical-professional, when I look at this image below (I searched for images of the torso and arm lymphatic system), it seems that the top part of the arm doesn't have lymphatic system, and it's mostly on the inside part. But, maybe this chart is incomplete. Anyway, perhaps a removal of some skin does not have a huge risk of further lymphatic damage, or perhaps it does. These are questions I'd ask the dermatologist, and also I'd consult with a PT who specializes in treatment of lymphedema, if I were in your shoes....

This book has a lot of good information about preventing and treating lymphedema. One of the authors is my friend, and she's treated me in the past for an acute lymphedema flare-up, but I've (luckily!) not had a chronic problem. I completely appreciate your worry about this, for sure.

https://www.amazon.com/Lymphedema-Breast-Patients-Prevention-Healing/dp/089793458X

MCBaker

Illinois Lady

Compare me to Gilda Radner? What a wonderful compliment. I just got home, poochie and I are tired. We logged 9,771 steps. I don't think I will go to the gym this afternoon.

LPLlibrarygirl

Thank you for the warm welcome IllinoisLady. I have been enjoying your quotes for the past year! I like the conversation on this thread with topics ranging from weather to dessert, with a little cancer thrown in too!

Thanks for the suggestions CeliaC. I have heard about Claritin before but I once had an allergic reaction to it so I'm probably not going to try that one. I will try some arnica. I have just started using a product called Two Old Goats. I rub it on my hands before bed and enjoy the way it smells. I am not sure how helpful it has been though. I do know that I need to exercise. Walking would help with everything! Some days it's hard to walk with our winter weather but mostly I never seem to make time for it. I do attend a bc exercise class at my medical center once a week and enjoy the activities and the people, but it is not enough. Drinking water should be the easiest thing to do, yet I often don't remember to do it! What about diet and SEs? Is there information on any correlation? I do well with fruits and vegetables but I eat a lot of eggs (I have chickens) and too many carbs.

I have not had acupuncture for SEs but I did have it after surgery and radiation when I developed a frozen shoulder. I first worked with a great PT who finally told me that insurance would no longer pay for my sessions because I wasn't making enough (any?) progress. I decided to try acupuncture, which as mentioned above, was not covered by my insurance. I had about 5 treatments and felt it relieved my pain, even though the shoulder stayed frozen for a few more months. I would love to hear more about anyone who had success with acupuncture for SEs.

centerhill08

Thank you all for the warm welcome!! I truly appreciate it.

I was taking the Letrozole before bed and having the hot flashes/chills in the daytime. So I have cleverly started taking the Letrozole in the mornings, rather than before bed. Now my chills/hot flashes happen at night. I'm already dealing with insomnia, so I'd rather have it all happen at once. Plus, I can either throw off the blankets or pile them back on. Kind of like a win-win situation...as far as AI se go! I consider myself pretty darn lucky that is all I have to gripe about, but will definitely ask my doc about it at my next appt.

Mac5 - I hadn't thought about acupuncture for AI se...which is silly because it helped me so much with the lingering side effects of Chemo. Among other issues, I had some neuropathy in my feet which was completely banished after one acupuncture treatment. I think it is definitely worth a try if you have a good acupuncturist. I'd love to hear how it goes if you do give it try!

I am really happy to be part of this group. No one in my family/friend group wants to talk about BC...especially my BC - so it gets a bit frustrating going it alone.

IllinoisLady

Centerhilo8, glad to see you back. We do talk about cancer here and many other things. I think we all have stories of reactions and problems with family or friends when we got diagnosed. I had people who wanted to help or so they said, but the vibe from them was one of my feeling deep discomfort coming from a lot of them. It wasn't a thing like they were thinking it might rub off or something -- more like deep down they were glad it wasn't them and then were embarrassed or personally upset for feeling that way. I just ignored it. Never will forget an evening dinner with friends and family when my BIL pulled my scarf down saying you don't have to wear that, you are among friends.

Frankly, I didn't care who I was with. The scarf made me feel less awkward and more like everyone else there. I really wanted to say something like -- why don't YOU just admit you just want to know how I look bald. Then I got control and just put my scarf back on and kept my mouth shut. Not for his sake so much as everyone else's.

Good for you taking the pill (s ) in the a.m. I never dealt with hot flashes ( had them during menopause a bit ) with Arimidex, and I don't know if they feel the same or stronger when you are on these pills, but when I did have menopausal hot flashes I would just stick one foot out from under the covers and it helped a lot to keep me from its turning into a real soaker.

I've heard often here and on other threads that it is easier to share cancer with others who share the disease with you. If you haven't had it you just can't know the ups and downs and in spite of wanting to be there for someone very few really understand.

Chevyboy

Morning girls! Talking about Lymphedema... I had 3 lymph nodes, which was standard procedure in 2009... I didn't think much about it until... my left ankle started swelling! And it hurt... I thought about Lymphedema, and went to a medical supply store, and bought some compression stockings! AND a "donner", which really helped to get them on.

They really helped a lot! We kept walking as much as we could.... THEN I twisted my ankle, walking home from a neighbor's house, and fell on my hip. Man, I was "dead in the water"...! I could NOT get up! We were in the alley, behind my neighbor's house, and didn't know what to do! I tried pulling myself up with my Husband's pant legs, because I was too heavy for HIM to pull me up....

Finally, I got one leg to help get me up on two feet. Then our neighbor's Son, came home, after taking his Dad to the Doctor... I could hop, with my Husband to the edge of the alley.... He had a wheel-chair in his car!!! Now if that ain't luck!

Got me wheeled home, into my car, and off to ER.... Gambling trip was cancelled... Hah!

I had broken my hip, had a rod put down my femur, with a couple screws, and out of the hospital in about 3 days. But all those incisions and drains and needles in that SAME side as my breast cancer, really set off the Lymphedema.

Then, naturally I got "veinous insufficiency" which is ANOTHER mess you don't want to deal with. My ankle/leg gets blue, and hard, and the skin is paper thin. But I massage it by hand, wear compression stockings, and I even have those wraps I ordered from Amazon, that fits your lower legs, and "massages" them like they put on you in the hospital, helping with circulation!

So now, just everything hurts. I think this winter-weather makes it worse. But I'll just take some X-strength Tylenol, and put on those stockings and we go shop.... or walk around the block! Walking is so good for you. Use a cane if you have to, and just know that getting older, just gives you more reasons to be thankful for every day.

IllinoisLady

Listening is the oldest and perhaps the most powerful tool of healing. It is often through the quality of our listening and not the wisdom of our words that we are able to effect the most profound changes in the people around us. When we listen, we offer with our attention an opportunity for wholeness. Our listening creates sanctuary for the homeless parts within the other person. That which has been denied, unloved, devalued by themselves and others. That which is hidden.
In this culture the soul and the heart too often go homeless.
Listening creates a holy silence. When you listen generously to people, they can hear the truth in themselves, often for the first time. And in the silence of listening, you can know yourself in everyone. Eventually you may be able to hear, in everyone and beyond everyone, the unseen singing softly to itself and to you. -Rachel Naomi Remen

IllinoisLady

Sunny and not too cold here. The worst has been a bit of a wind that seems to have calmed down. Late breakfast -- we were out of milk, so a quick trip to
Aldi's that wasn't as quick as I meant it to me. Dh likes to 'look' for things sometimes and we ended up with more than I meant -- but Aldi's is such a reasonable store. I got a huge package of blueberries ( great anti-oxidants ) for $1.59.

Now I have a few more things to do -- one was catching up here because I was late this morning.

I have always worried about lymphedema, but so far, so good. I was super worried ( only lost 3 sentinel nodes -- all nice and clean ) with my broken arm which was on the left side which is my cancer side. Seemed it took such a long time for the swelling to let up. I finally just quit 'noticing' because I'm not a good worrier ( mind a bit too fanciful ) and it seemed a waste of time and I wanted to have a 'mind over matter' attitude so I had to let it go. So, I think it is okay. I think that is one of those things that you either get or you don't -- just like you actually can't tell who will get a cancer dx. I wish no one had to get it but there is so much we don't get to pick and choose. I console myself with the fact that I can conquer and be better for it. I hope this for everyone -- that we just get better and stronger for the problems we overcome.

Hope you are all having a sunny day.

petite1

Veeder14, Beaverntx, Chevyboy, IllinoisLady and anyone I missed. Thank you all for the information. I have been dealing with precancerous skin conditions, Basal cells and a squamous cell cancer most of my life. So I do take care of it and will take care of these spots, when I find the best way to safely do so. I am calling my navigator in the morning for her advice and will also call my Dermatologist in the morning. Since I am freckled it is hard for me tell what spots I need to treat, so I need to go back and have her freeze them. (after I make sure it is reasonably safe to do so on that side) The swelling I have is where there was a seroma just above my scar. It is swollen now and hurts. I assume it is lymph. Thanks again!

Chevyboy

Oh, I forgot about the Seroma I had! I was told the same thing.... They are filled with fluid, unlike a Hematoma! You can't even tell where the scar was now... But the Mammogram's showed the "pocket" for quite awhile...

Sometimes I have no idea what I am talking about, and I just speak from experience.... of what happened to me... But it's just nice to hear what other gals have gone through.... cause maybe we can find a way to help ourselves, or help someone else.

Beaverntx

Petite, you are seeking information from good sources before making your treatment decision. Those freckles can provide an extra challenge! Know that we have your back.

Puffin2014

The ice dams on my roof caused water to start dripping through my kitchen window and then into a bedroom through the air conditioner vent. Luckily there was some plastic under the dripping that made a weird noise and alerted me. The company came and cleared the huge drifts off my roof and placed special chemical socks on the edges that will cause the ice to break up. I filed an insurance claim and they sent Service Masters over with some blowers and dehumidifiers that have been blowing on my kitchen and bedroom walls since Friday morning. They're coming tomorrow to recheck the moisture level in the walls.

I decided I've had enough of the house maintenance, snow and ice maintenance, and Saturday I toured a 55+ place in town, picked out a 2 bedroom apartment and signed the lease that same afternoon! You can see a virtual tour of the building at https://tours.simplewebsitecreations.com/926986

I've been taking carloads of stuff down over the weekend and putting it away. I'll stay in the house until Service Masters is done with their work, then I'll call a moving company to move my furniture. January in ND is not a good time to list a house for sale- the piles of snow are so high no one could even see the quality of the house let alone my beautiful backyard. I'll leave a light on a timer, ask a neighbor to keep an eye for any suspicious activity, my snow removal company will keep my driveway and sidewalk cleared. I just hope winter settles down and we don't get more 14" blizzards. I'm thinking when I get back from my cruise the end of Feb I'll meet with a realtor and decide what needs to be done to spruce my place up, I'm thinking painting the living room, bedrooms and hallway and probably changing the green shag carpet in the second bedroom will definitely be on the list. Hopefully by the end of March we could actually list the house.

This feels like such a right decision, I'm so excited I can hardly stand it. Makes it hard to go to sleep at night though, thoughts just spinning in my head.

MinusTwo

Puffin - I love it. Very much like the place my BFF is moving into in the Woodlands in February. I spent a long time touring her complex and frankly I'm jealous. Congratulations.

IllinoisLady

Puffin that is such a pretty place and I applaud your decision. I was stunned when you first spoke about your snowstorm and knowing you were there alone. Now you will have all the amenities and only your personal space/apt. to clean. Seems as well there are plenty of flowers and even vegetables for your apt. kitchen if you like, in the yards.

Here's hoping ( I would be excited too ) that it all happens pretty much as your scenario right now. Wishing you all the best as you start this new chapter of your life.

CindyNY

Puffin2014 - Wow! That was a fast decision. I wish you the best, you seem so happy! I did see your picture of snow drifts higher than I've ever had.

As a snowbird who leaves our upstate NY home vacant while we're in FL , I want to mention to keep your heat at 52-55 degrees. I'd shut off the water if you can - I have radiators which draw on water so I can't for the whole house, but I do turn icemaker off, and shut off water valve; washing machine shut off valves too. I keep bathroom vanity open & under the kitchen sink as well. Cicuit breakers off on water tank, no need for hot water. And I shut off all other 220 curcuits too. I have a front porch light on a timer & a kitchen light on one too.

If you already have a plan for all I've mentioned, ignore me & get packing!

MCBaker

Wow! That was quick! You must have had the idea loaded for quite a while, and this was the trigger. (had to change terms for a consistent metaphor)

Once you get settled in, please invite us to a virtual housewarming. I have an interior decorator who helped me rearrange things, and it really made sense. I just rearranged the kitchen, and I'm happier with that, too.

Last time I had a garden was 20 years ago. I have had a garden again for two years at these apartments. I am tickled pink, except that I am used to living further south. I want okra and peppers, dangit! I am adapting, though.