How about women over 70
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weninwi: I'm sorry that you had progression after a short time on everolimus and fulvestrant. Hopefully your next treatment will work longer.
Dr. Bardia is my MO. I really like him because he is a caring person, willing to discuss the science behind everything, and objectively presents the pros and cons of different courses of action. Elacestrant came up in relation to my decision to skip the AIs for now due to their side effects and my situation. Elacestrant does have SEs (nausea and vomiting) but they are different from those caused by AIs and might be more tolerable to some people (like me who puts up with lower GI SEs from my anemia treatment.) He is hoping to do a clinical trial in the future with early stage bc patients since this drug might become an alternative to tamoxifen and AIs.
I never did chemo (oncotype of 24 so not recommended at my age), considered tamoxifen but ruled that out because of family history of stroke and an Italian study showing high incidence of DVT in women over 70, and nixed the AIs due to osteoporosis, osteoarthritis and an enlarging thyroid. I got through rads OK but six months later developed late stage radiation pneumonitis with progressive pulmonary fibrosis. My RO got me into the ILD clinic right away where they prescribed prednisone which contained the PF to my right lung. According to my pulmonologist I probably had subclinical ILD from micro aspiration of gastric acid (Barrett's esophagus and esophagitis/upper GI bleed 4 years ago) and should not have done radiation. It is not a contraindication in the current SOC like autoimmune diseases are. My doctor sees a 90% correlation in his practice (mostly rads for lung cancer) but nobody has been able to prove a cause/effect relationship yet. I'm currently on a high dose corticosteroid inhaler to lessen the debilitating cough. Thankfully I'm able to walk 3 miles on level ground (albeit at 3 mph rather than my previous 4) and am hoping my recently increased dose will help the SOB on exertion.
If you're interested in trying elacestrant, have you contacted Menarini-Stemline to see if there are any upcoming clinical trials? It's due for quick FDA approval and I'm sure they are trying to maximize its usage. Best wishes for finding an effective next treatment.
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Well, I had the Ortho f/u and he was very pleased with my progress and ROM, etc. I feel like it is time to move on from breast cancer and then the joint replacement, get a trainer to lose some of this weight all this brought on and move on with life. Of course, I did thrown in the question again about joint replacements and AI drugs. And, no answer, which surprises me that this has never been posted in any medical Ortho journals. The PA was most interested and is attending a conference in December. I told her to stand up tall and ask that question from the audience --- a real academic question IMO.
I may give Aromasin a try next year at my 6 month mark but I am more of a pessimist on all the three drugs. Another oncologist had mentioned Tamoxifen in low dose now. Maybe that is out of the box (5 mg instead of 20 mg) and there are articles about this. But it seems that may only be used for DCIS?
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Well, I had the Ortho f/u and he was very pleased with my progress and ROM, etc. I feel like it is time to move on from breast cancer and then the joint replacement, get a trainer to lose some of this weight all this brought on and move on with life. Of course, I did thrown in the question again about joint replacements and AI drugs. And, no answer, which surprises me that this has never been posted in any medical Ortho journals. The PA was most interested and is attending a conference in December. I told her to stand up tall and ask that question from the audience --- a real academic question IMO.
I may give Aromasin a try next year at my 6 month mark but I am more of a pessimist on all the three drugs. Another oncologist had mentioned Tamoxifen in low dose now. Maybe that is out of the box (5 mg instead of 20 mg) and there are articles about this. But it seems that may only be used for DCIS?
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I have anxiety from 5 years ago. It’s putting a stop on my life. I sit around the house doing minimal household chores.
I go out in am to walk then feel sad come back and want to sleep. Used to swim daily now it’s only 1 time a week. I was very active before breast cancer but now I hardly see friends and I want to make my life better but my mood goes up and down like a roller coaster.
I had 2 total knee replacements. I was thinking that I would be able to walk without pain keep the endorphins up. and yes it’s 8 weeks after the 2nd one and no pain in knees while walking. I decided to do tkr to raise endorphins by walking more with out pain. I have no pain but feel tired a lot and feel depressed.I want to travel and to be happy. So many others that I know, have conquered the sadness or never had it. How do you ward off the anxiety and keep busy. My brother said keep busy and I try but he is working. I’m writing this now and feel tired not sure why, wish I could figure out how to get over the tiredness.. any suggestions
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LoveLau
Sorry things are not great for you,. This thread is sort of inactive. You might try the "older" thread below. Many of them are older than our 70+ years, but at least it's active.
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Lovelau, Have you discussed your tiredness and depression with your primary care doctor? It could be something as simple as a vitamin deficiency or some other manageable condition. Good luck.
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lovelau, I second alicebastable’s advice to consult your PCP since fatigue and depression can have many fixable causes. I had pretty bad anemia and didn’t know it until my doctor checked my blood levels. There are also many treatments for depression. I hope you can get to the bottom of this so that you can become active and happy again.
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lovelau are you on any hormone therapy. If you are talk to your oncologist? If not do what others have suggested and talk to you primary care physician about your fatigue and depression.
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lovelau,
When I started having more crying episodes and feelings of greater distress, I asked my Primary for a Vit B12 and folate test. It came back low...below normal. Never had low Vit B12 before (I eat meat). My Primary said Vit B12 absorption from food can decrease with age apparently due to reduction in stomach acids. Vit B12 deficiency symptoms include feeling tired or weak and mild depression or anxiety, plus more. I started sublingual Vit B12 supplement 1,000mcg daily by SuperiorSource from Amazon. I was told not to bother with oral - absorption is better with sublingual. My B12 level returned to normal range in a month or two and the crying, etc resolved.
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lovelau,
When I started having more crying episodes and feelings of greater distress, I asked my Primary for a Vit B12 and folate test. It came back low...below normal. Never had low Vit B12 before (I eat meat). My Primary said Vit B12 absorption from food can decrease with age apparently due to reduction in stomach acids. Vit B12 deficiency symptoms include feeling tired or weak and mild depression or anxiety, plus more. I started sublingual Vit B12 supplement 1,000mcg daily by SuperiorSource from Amazon. I was told not to bother with oral - absorption is better with sublingual. My B12 level returned to normal range in a month or two and the crying, etc resolved.
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Hi everyone. Just checking in to see how it's going. I'm doing OK, finally coming to grips with my "new normal." I'm considering having a prophylactic mastectomy on my remaining breast because it's causing a lot of annoyance/discomfort being a uniboob (D cup). I love the idea of being totally braless for the first time in my adult life, but my fear of having lymphedema on BOTH sides keeps me from having the surgery. I don't know why all our choices have to be so damn hard.
Anyway, enough of that whining. I hope you're all doing well so check in when you can.
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Hi lw422 and everyone. I had a CT on Monday (at the big hospital) for lung nodule surveillance. I hadn't made it home yet when I got a call from my pulmonologist's NP telling me I had to go back on high dose prednisone since there was consolidation in my right lung. I hadn't noticed anything but that side doesn't work too well so it's not surprising. Better to head off trouble before it starts but I had to go to my local hospital to get my other meds adjusted and supplemented for the coming SEs. The CT hasn't been read by a radiologist yet; hopefully that will happen before my doctor's appointment next week.
Lw422, fear of LE getting worse makes a decision that would be a no brainer otherwise hard. My breast surgeon wanted to do a nip/tuck on my other side to ever things out but I don't want to risk LE/pain there (even though I know it was caused by radiation.) Cosmetics are not as much of a problem as being unbalanced, however.
Monday was sunny and I got to eat lunch outside served by a waiter at a table (rather than in my car.) After the long isolating winter I felt like a prisoner out on parole. I'm looking forward to the good weather and being able to talk to people (other than my husband) in person outside. This site has been a lifeline (sad but true) so I'm sticking around.
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Maggie, good luck to your lung scans and treatment!
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Good morning everyone. So glad there's some new activity on this thread. I haven't posted recently because I keep having difficulty finding the thread, particularly after the recent "improvement".
I have just gone back and read all of the posts from the beginning. Hope that everyone is at least stable, if not improving.
My latest news is an MRI with contrast of the full spine. I have been experiencing increasing mid-back pain several inches to the right and left of T8 . As I have multiple spine mets and the one at T8 is largest at 8mm, MO wanted to rule out mets as the source of my pain.
Good news is that spine mets are still bone only and are stable from my January scans. Bad news is that there's no obvious source for my pain. MO has prescribed tramadol, but I don't want to take it, as it affects my cognition. I don't want to spend whatever time I have left in a stupor.
Very gentle hugs to all
Eleanora
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@lotusconnie - you mention you are a healthcare provider. May I ask what your title is? Based on your previous posts, you have not had cancer nor are you anywhere near the age of 70 (full disclosure: I’m ‘only’ 65). I’m curious what your qualifications are for your many posts on a variety of threads. As another poster mentioned, the purpose of these forums is for breast cancer patients/survivors to talk with each other.
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@lotusconnie,
I hope it is just your youth and inexperience which is making you so tone deaf by what you have posted. You specifically mentioned minus two, however her reference to having written her DNR was in Sept 2021 - almost 2 years ago. In addition, she and several others on this thread do indeed have a terminal disease. Being Stage IV cannot be cured and may lead to death. I can only speak for breast cancer but these conversations take place over the months/years of treatment and Stages. Your post comes across as something from an undergraduate course titled Introduction to Hospice & the DNR. Personally, I find your comments demeaning for those of us who have lived into our 70's with breast cancer.
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I am very sorry for my posts to cause this misunderstanding. I will delete them.
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Eleanora, I'm sorry that you are dealing with pain. I also hate opioids both for the brain fog they cause as well as the GI issues. I will take them at night to sleep but not during the day if I can help it. My palliative doctor is actually an anesthesiologist/pain medicine specialist and is very open to trying different things to find something that works. He said that the cause of pain can be complex and hard to figure out. Even the type of pain is not always indicative of the cause. For example, inflammation can cause nerve pain so treating the inflammation is the answer. He'll try high dose NSAIDs with high dose acetaminophen (and PPIs to ward off stomach issues), low dose steroids, gabapentin/Cymbalta, acupuncture, TENS and nerve blocks just to find something that works. He does prescribe opioids but always tries to find something else first. My pain isn't too bad and is pretty well controlled so I'm not really taking advantage of his expertise. I hope you can get some relief.
I saw my pulmonologist yesterday and can start tapering down the high dose steroids in about a week. There is not much new scarring from the exacerbation which was caught early. The lung nodules I had are stable but I have two new ones. He thinks they are most likely caused by inflammation (so do I) but he is following protocol and checking again in six months.
I hope everyone is doing well (or as well as possible.)
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No one has commented since May, 2023? Is anyone out there?
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Oh yeah - still here. And I'm 80 this year. GI doc said no more colonoscopies. Since my last one showed no polyps, she said the risk was not worth the results at this point.
Plastic surgeon is willing to replace the 13 year old Allergan 410 implants, but we agreed to leave them alone since there doesn't appear to be any leakage or ruptures.
still getting Prolia shots every 6 months for osteoporosis partially due to cancer treatments. Still have CIPN (chemo induced peripheral neuropathy) from chemo drugs - but fortunately not much pain, just dead feet & fingers. Unfortunately also have mild lymphadema with some cording. Thanks again cancer….. And sadly the chemo which caused the loss of hair, also caused the loss of Cilia in my inner ear - so I'm trying to get used to hearing aids. UGH.
On a positive note, basically I'm OK. I'm enjoying gardening. I need to start walking again & get back to Silver Sneakers classes. Looking forward to water aerobics this summer. And a trip to see the Pacific Ocean.
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Since you didn't give an exact date, will wish you a happy 80th birthday now! I am 73, and 80 seems like a far away dream. I have bone only mets. Other than mid back pain, most of which is from arthritis exacerbated by the meds, and occasional fatigue, I'm doing well. Traveling as much as possible. Currently on a cruise from NYC to Toronto. Touring Quebec today. Don't know how much longer I will feel this good, so trying to make the most of it.
Wish everyone a good day.
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Lots of new thoughts after reading these comments. I am almost 73, never even thought about not taking the meds. Anastrozole SE were extreme but OC would not change the meds and sent me to PC , "there must be other health issues causing this." Lots of test and visits and no other issues. So it was the Anastrozole.
Changed OC Dr. in Oct. now on Letrozole and am doing much better. After 2 years of insomnia, which was going to kill me before cancer would, I am sleeping better. I have even had nights that I slept 8 hours. My hot flashes and night sweats are almost gone. Panic attacks and depression also gone. I am much more positive now that everything will be ok. Asking to get off Trazodone since my mental state has gotten better.
Even though I "might" now have kidney cancer. Urologist said it will be easy to cure if the cyst grows, we will need to watch it for now. Checking again in 6 months.
Water fall on our Grand Canyon Rafting Trip in 2021.
I am going to survive this for a long time too and I am going to have many more adventures like this trip before I leave this life.
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Artwish - so happy to hear things are looking up for you. I hope you get to enjoy many more years and adventures. Keeping you in my thoughts that the kidney cyst stays stable (I’m also being monitored for a kidney cyst and a pancreatic cyst, along with a few lung micro nodules - all found as incidental stuff on a CT scan for another issue).
Wishing you the best.
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@artwish I don't know what made me decide to read this thread all the way through - part of it was curiosity if I had posted on it because I'm one of the Glorious Geezers. Sure enough, I had, and because I'm old, I'd forgotten! Anyway, fortuitously (I hope) for you, I had kidney cancer in 2018, the same year as breast cancer. I'd met with my MO just to touch base before surgery - I'd been referred to her in her hematology mode by my PCP shortly before the mammogram that led to it all, and she said I might as well come in for a chat. She sent me for a no-contrast chest CT before surgery since I was a smoker at the time and she preferred CTs for possible problem patients. At my post-surgical appointment with about a week after the lumpectomy, she told me my lungs were surprisingly good after decades of smoking abuse, but the scan had found a nearly 7" tumor on top of my kidney. It wouldn't have been found if it was lower, because I, like many others, had no symptoms. So, I had my left lumpectomy in July, a re-excision to get clean margins in late July, a total left nephrectomy in September, and finally started radiation at the end of October, which lasted until early December. The nephrectomy wasn't awful. I was sent home the next day after I'd peed and walked around the corridors. It hurt for a few days, then I just had some soreness. I was doing slow hikes in a favorite woodsy park the next week. If yours is small, you might have a partial nephrectomy, which is a little more complicated surgically and the first few days after, but leaves you with better kidney function. Most kidney cancers are cured by surgery with no follow-up except periodic scans.
PM me if you have any questions or just want to vent!
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Thank you for responding. The DR. was very positive that this will be very curable if it does continue to grow. We will do another CT scan in 6 months.
I am going to try to not even think about this till then.
Take Care and keep on hiking!
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