How about women over 70
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minus two, I don’t know how to find the posts from Special K re Herceptin rate. What difference does it make? I am getting Herceptin and Perjeta and don’t know which is causing my se. Could you ladies please help me try to understand? I’m almost 76 and learning so much from everyone. Thanks.
Is my profile showing up?
Thanks. Be
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Nana - first of all - tell your oncology people that you will only accept the infusion over 60 minutes - FOR EACH DRUG. "They" love running them in only 30 minutes each. I believe Special K and I agree increasing the time made the biggest difference. I had very few side effects once I made them drag it out for 60+ minutes. Of course you will need to sit there longer, but what's another hour in the scheme of things once we over 70? But I still needed more hydration. If they're not giving you a 'bag' of Saline during each infusion, that's another thing you can request to change. Where I was treated the doc had to submit orders to the infusion center for this to happen.
Nope - no information. After you fill in "my profile" you have to select "make my information public" for it to be available.
If you have specific questions for Special K, you can do a private message - see the left side of the screen. Or you can 'search members' and send a private message from there.
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I would suggest that for herceptin you have them run a 90 minute drip. I so wish I had known this when I was going through chemo/herceptin in 2009 and it wasn't until I read several years later that running a longer drip could help. As MinusTwo suggested, you can pm Special K. Good luck.
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thanks all. I had Herceptin over 60 min and no new se. still have drippy nose and watery eyes.
Be
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Hi every one
I just found this forum and very glad I did. But unfortunately I do not see any activity since October.
I'm 73 diagnosed with breast cancer exactly one year go and tolerated TCH fairly well, chose lumpectomy but my life changed completely with pain in my thigh bones ( both)started middle of chemo, was crippled, wheel chair bound and finally diagnosed with atypical stress fractures of both thigh bones from Boniva ( taking for osteioporosis, only 2 yrs) along with chemo and steroids.Finally had rods placed in August, so I still have limited mobility and chronic pain, but pushing my self to walk a mile few times a week. Just got my 6th dose of Kadcyla today. Not tolerating well, it is delaying the healing of my surgery, and also upper back pain, shoulder pain living on Tylenol . tired and not sleeping.platelet counts drops to 40s during nidus.
As mentioned before, quality of life is important, I like to live with out pain. However if I do not take the chemo now and if cancer comes back I will be more miserable and may have to take stronger chemo.
So I'm struggling to make a decision weather to stop Kadcyla or not.
From what I read from previous posts, Herceptin mono therapy also not a picnic and has side effects.
Puzzled , stressed and can not make a decision.
I did not mean to drag on and complain, but I feel like my life sucks. I feel better by posting this at least I know I'm not alone and feels good to know there is support.
Hugs to you all!
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Hello Docy. First, I'm so sorry you are having such a rough time of it. Second, please don't apologize... feel free to complain all you need to. We all get it. I have no experience with Kadcyla but it sounds unpleasant. Is it possible to have a dose reduction?
Sorry I can't offer any advice of value, but I want you to know that I saw your post. Take care.
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Docy - seconding what LW said - this is the place to rant. So sorry about your bone fractures. I don't have experience with Kadcyla either, but I did take Herceptin. I took it with Perjeta the first 6 rounds. For the rest of the year, I dropped the "P" after determining that caused diarrhea. Just the "H" alone really wasn't a problem other than some fatigue. And who knows if that was leftover from everything else.
What is your oncologist saying? If you're still conflicted, maybe it's worth getting a second opinion?
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Lw and Minus two,
Thank you for your reply and support.
I had a residual disease in one lymph node and so I’m on Kadcyla.
Got the second opinion .
The dose is already reduced , will see how I do this cycle.
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Very impressive ambitions.
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This is, and believe me,, I totally know it really is not, sort of funny to me because you all seem so young. I'll be 88 in April. BC is the one thing I never feared because of having ovaries removed, due to a very rare form of cervical cancer in 1969 when I was 35. I was given less than a 20% chance of living for two years. After the two years I did do estrogen only HRT. I was stunned and traumatized by my diagnosis 3 years ago. Had re-excision lumpectomy on my 85th birthday. Then 16 accelerated partial radiation treatments . Have been on Arimidex since June 2019. No libido, a little hair thinning, stiffness. But it's hard to tell whether its Arimidex, age, or walking 10-12,000 steps a day. For the past 3 months have had left knee pain, buckling leg, which certainly makes walking difficult. Arimidex? See MO Monday for 6 months checkup. Always scared before. Will discuss knee pain. Want to continue walking, travel, appreciating every day.
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This is, and believe me,, I totally know it really is not, sort of funny to me because you all seem so young. I’ll be 88 in April. BC is the one thing I never feared because of having ovaries removed, due to a very rare form of cervical cancer in 1969 when I was 35. I was given less than a 20% chance of living for two years. After the two years I did do estrogen only HRT. I was stunned and traumatized by my diagnosis 3 years ago. Had re-excision lumpectomy on my 85th birthday. Then 16 accelerated partial radiation treatments . Have been on Arimidex since June 2019. No libido, a little hair thinning, stiffness. But it’s hard to tell whether its Arimidex, age, or walking 10-12,000 steps a day. For the past 3
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Re the original question as to when do you call it quits, I just called it quits on Tamoxifen. At 81, after three different "breaks", the side effects were coming back faster each time and truly interfering with my ability to accomplish anything. I have projects I still want to complete and know that at my age I have a finite amount of time in which to complete them. With my doctor's blessing ("quality of life is important") I quit taking Tamoxifen after 3 and 1/2 years. That was about 6 weeks ago and I am feeling much more like my old self and have some projects underway again. This is my story and my decision and like almost every thing else in this cancer journey is specific to me and not necessarily appropriate for anyone else!
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Hi beaverntx: Your post has given me food for thought. I'm 76 and am suffering side effects from arimidex (after switching from tamoxifen, which also produced side effects). One feels that "the system" thinks you should put everything on hold until you get through the treatment. The arimidex is giving me carpal tunnel syndrome which is advancing fast, and also something called Dupuytren (to be fair, it started before the arimidex but also seems to be advancing), plus sleeping poorly almost every night. And I've only taken arimidex for 11 months. I hope to find information about the statistical probability that the cancer ((DCIS) will come back and spread at my age. I know there are no guarantees, but maybe I can find some reliable information, not based on fear.
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Diagnosed at 76, radiation not recommended due to age and stage. Due to ongoing dental procedures, took Tamoxafin for only 5 months. I made the decsion to quit with approval of MO because: side effects were a double dose of old age plus the appetite of an athelite (quality of life) ,and a new study presented at Oncoloy meeting June 2021. This study addressed hormone therapy effectiveness in older women with a newly created Mammoprint risk catagory. I chose to roll the dice at an 8% risk of return/metastasis versis 4% with Tamoxofin. I now feel much better like I did prior to the hormone therapy. I am very fortunate to have been diagnosed very early: found on routine mammogram after never having an abnormal MG, the lump was never felt even by the surgeon. I am a big advocate of routine MG even in old age. However, if my risk of return were higher, I would still be on Tamoxafen. As to how much higher I do not know.
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"a new study presented at Oncoloy meeting June 2021. This study addressed hormone therapy effectiveness in older women with a newly created Mammoprint risk catagory."
I haven't been very active in this forum so please forgive my ignorance.
- what new study presented at Oncoloy meeting June 2021
I did a search and still not sure what study you are referencing.
Thank you.
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Jinnynh, this reply is delayed but I just saw this thread. Memorial Sloane Kettering has a nomogram for predicting recurrence for DCIS; https://nomograms.mskcc.org/breast/ductalcarcinoma...
74nowarranty, I was diagnosed at 69 but had radiation because of larger tumor size and lymphovascular invasion. I'm also rolling the dice with worse odds than yours by skipping the estrogen blockers. I am already dealing with arthritis and osteoporosis which would be made worse by the AIs, and I found an Italian study that showed while the incidence of DVTs from tamoxifen is in general about 2%, it was much higher in women over 70. When I showed my MO the paper and let him know I didn't want to risk being unable to walk 3 miles a day to keep the joint/bone problems at bay, he supported me. Studies have shown that 2.5 hours of weekly exercise reduces the risk of recurrence by more than 50%. Also, if I had a recurrence and survival became more important than QOL, I could use the AIs then. I'm at peace with my decision.
Everyone is in a unique situation and needs to pay attention to the standards of care but do what is best for them. I have heard some older women with bc say that they feel brushed aside by doctors who figure that death after 70 is to be expected. I let any doctor who hints at that know that my parents/grandparents lived to be over 90 (one to 103,) and at my age I still have a living uncle (97) and aunt (94.) There are no guarantees, but there are no certainties either.
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I just found this thread. I am 73 and am a 20 3/4 year survivor of Stage 4 MBC de novo. So I have been on chemo the whole time. Currently on Herceptin and Xeloda and having problems with both of them, combined with "old-age" stuff.
But I am surviving!
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Hello All - I found this site a few months ago but for some reason it would not allow me to post. Today the technology team found a solution for my issue and now I'm in. So excited.
I guess I have been fortunate so far. I found a lump this past May that turned out to be positive for IDC, 2 cm, Stage 1a, Grade 2, Oncotype 14.
I opted for a lumpectomy which was very easy and from which I quickly recovered. I had a short 15 day course of radiation which was also very easy - no burns, discomfort or fatigue.
Taking the recommended AI is what I am struggling with. My risk of recurrence is low approximately 4% with AI and 8% without but I also realize there are no guarantees and that the BC can come back with or without taking the AI. The Predict test says that there is only a 1-3% difference if I take.
I am a "young", active 71 year old with a new grandchild. I was expecting these to be "good years" and do not want to take a drug that may make me feel bad.
All my doctors have said I should just give it a try for 3 months and see. So I did start the drug in September only to have a prolapsed bladder two weeks into taking the drug. Of course, the doctors (except for my primary care doctor) all say the AI would not have caused/impacted the bladder prolapse although I have never had an issue with this before now. My own opinion is that everything in our body is interconnected and things impact in ways we may not know. If an AI reduces estrogen and causes vaginal dryness and/or atrophy how can you say it does not impact your pelvic floor?
My primary care doctor suggested testing my natural estrogen levels so I have been off the AI for the past 14 days so I can have bloodwork done Monday. MY PC was open to maybe taking the AI every other day although my oncologist wasn't too supportive of that idea.
I have done tons of research over these past 6 months. I have found a few studies on taking reduced amounts of the AI or Tamoxifen but the studies are limited and so far do not indicate that reducing the level/frequency of the medication necessarily reduce the side effects.
I would like to have the strength to just opt our of the drugs but also know I would be devastated if it came back somewhere else in my body.
So I continue to struggle - to take or not take. Any words of advice or other information would be much appreciated.
Thank you.
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boysmom19, not sure why I clicked in this topic, I am not in my 70's yet but close.
I had IDC in 2003 when I was in my 40's and pre menopausal. Treated with 2 lumpectomies, the second for clean margins, removal of 24 nodes, 4 Rounds of chemo and 31 radiation treatments.
In late 2018 I was diagnosed with ILC in same breast and treated with mastectomy and 6 months of IAs.
August of 2022 diagnosed with DCIS with microinvasion. Had mastectomy of my remaining breast about a week ago. No treatment plan yet but will know when pathology comes back.
I will NOT tell you what to do as far as Aromatase Inhibitors/ Tamoxifen are concerned but will tell you what I did.
I was talked into taking Letrozole for 6 months but my gut has always been anti- AI for me! I stress, for me!
I have absolutely no doubt the drugs help many women but I also know they are over prescribed. As of now doctors have no way to know for sure who will get breast cancer again and who won't therefore they advocate AIs and Tamoxifen because that's all they have for preventative.
I went through so much anguish in 2019 over Letrozole. As we age we need estrogen and while we don't make it in our ovaries anymore a form is made in our fat cells and used by our brain and body. Mother Nature is amazing! I didn't want to mess with my estrogen then, but took the Letrozole for six months. Then I found it raised my cholesterol levels. Personally I wish I NEVER took it!
I know that sounds crazy since I did get a new cancer in my remaining breast. I still stand by my decision.
I am annoyed at the mixed messages I got. I asked for a bilateral mastectomy and was denied by the lead breast surgeon at a very prestigious cancer hospital in Philadelphia. The reason: he said it was hospital policy not to remove a healthy breast! Then at my post op visit he looked right into my eyes and said “you are free of cancer!"
Now I am not so naïve as to think he could know that, but come on, don't tell a woman she is free of cancer and you won't remove her other breast because it is healthy, and then tell her she needs to take a pill that messes with her hormones because she “might get it again!"
I have strong family history, mom and two of three sisters and at least one cousin all had breast cancer.
I took all the information I was given on AIs, did my own research and my Oncotype Dx score and applied it to me, not anyone else, but me!
Someone gave me really good advice, they said if you refuse the AI and later get cancer and won't feel regret, than that's what you should do!
As it turned out I did get it again, BUT like the two other times, my cancer was found early on a mammogram! I could be a poster woman for mammograms!!!!
I DONOT regret for one minute that I chose not to take the AI! I am not sure it would have done any good anyway. I do know I am healthier now than I will be in another five or ten years! I chose to side with the 92% chance of not getting cancer without an AI than the 95% with the AI. (Not the exact percentages but you get the idea)
My sister takes an AI and claims she has had no side effects. Good for her!
No one can tell you what to do, even the doctors, but I suggest you take all the information your doctors give you, do your own research and apply it to you and your “gut" feelings and life. No one knows you better than you!
I should add that I went for genetic counseling and testing in 2020 and none of the 54 genes they tested were positive for defects!
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mavericks mom - I am thankful you clicked on my post and appreciate you sharing your experiences. I am sorry you have faced this disease multiple times. You appear to have a very positive attitude and I agree with much of what you said. In my gut, I really don’t want to take the AI but I can be indecisive. I’m great at research and looking at the pros and cons but…I’m more scared of it spreading somewhere else than coming back in my other breast. I realize statistics say my risk is low but on the other hand other than age I didn’t have many risk factors to begin with - no immediate family members.
You said you wish you never took the Letozole. Do you have any lingering sIde effects from it?
Praying you have a smooth recovery from surgery and tolerate any further treatments well.
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Well, a dilemma. I’m 88. Took Arimidex for 3 years. After 2.5 years, extreme knee pain. Did not know whether pain was because of age- though I had never had joint pain - or because I walked 10,000 steps a day, or the Arimidex. Went off the Arimidex with MO approval for 6 weeks. Turns out the knee pain was from bone on bone hip osteoarthritis which I am fairly certain the Arimidex caused since no problems before taking it., though, of course, I got older. Have just had total hip replacement. Very difficult, mentally and physically. MO wants me back on Arimidex to complete the 5 years. Am afraid
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Keywestfan - Oh, a dilemma for sure! I'm sorry that I have no solution to offer, but I sure do sympathize.
I am going to be 70 in December. I take Letrozole, not Arimidex, but the problems are all very similar. Of my own volition, I recently stopped taking this for about a week and a half, because I had bad stomach trouble due to an antibiotic reaction, and I just did not want to add anything more to my system that would be problematic. During that almost 2 weeks that I didn't take the Letrozole I felt much, much better. I started back up on my regular every day schedule this past week and I am back to all sorts of side effects, and joint pains are one of the big ones. I never discussed taking the break with the oncologist because I know she wouldn't approve. She doesn't approve of the every other day schedule I decided on either, but taking it every other day actually helps me to keep taking it. Just knowing that on some days I won't be taking it keeps me taking it on the alternate days. Otherwise, I would probably totally give up and take whatever comes.
Before I started the Anastrozole 2.75 years ago I had only mild osteoarthritis in my fingers. That began to get much worse after I started the Letrozole, and then all the other joints fell in line; shoulders, elbows, wrists, knees, hips, etc. When I complained to the oncologist, I got the "Well, you're getting older" stuff. I just don't believe that I would suddenly have all these significant negative changes in my joint health (and other health areas) if it wasn't for the AI. I struggle every day with just how long to continue with this.
I truly hope that you arrive at a solution that you can live with. We really are between a rock and a hard place with these drugs!
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boysmom19, I wrote another VERY long post to you. Not sure why it didn't go through, this site or me, either is possible!
I will say the only lasting effect of Letrozole I have is higher cholesterol, and that isn't all that high.
The gist of what I said the second time around is that deciding to take or not to take and AI/Tamoxifen, is one of the hardest decisions a person needs to make regarding breast cancer. To save time and give some insight, hopefully, I am writing a list for you.
1. Beware of statistics, they are all general information. It doesn't matter if one has a 6% chance of recurrence with or without IA, via oncotypeDx, it matters what actually happens to YOU! I bet on my low, 8% chance likelihood of getting breast cancer again and I ended up with it for a third time! Thankfully now I have no breasts, and very little breast tissue cells left, in which to get it again. My oldest sister had IDC and non-Hodgkins Lymphoma at the same time. She was treated over a number of years successfully, had a less than 1% chance of developing another blood cancer, MDS, due to all the radiation for scans and treatments, yet she got it and it took her life!
2. Doctors don't prescribe AI's to harm anyone, it is NOT a conspiracy, but simply something they have that COULD help prevent cancer. They would be derelict in their duty to help patients if they didn't advocate for those medications.
3. You need to make the decision based on how you feel. No one can say you made a right or wrong decision! I am glad I chose NOT to stay on Letrozole and would never have even started it if I knew then what I know now! Again, that is what I decided for ME, not for anyone else. My second oldest sister takes a different AI and had been on it over 3 years with no serious side effects.
4. One can always start or stop medication but tell your doctor first before stopping ANY medication!
5. My suggestion: Make a decision you feel is best for you and stick with it until your health or new information comes out and causes you to revisit your choice. The total anguish of trying to do the right thing for our body, our family, while deciding what to do as far as possible prevention of breast cancer via, AI's are concerned, is what drains the joy out of our lives! You did your research, you had your doctor's input, do what you feel is best for your body! Trust your judgement whichever way you decide and go with it! Then live your life, free of breast cancer, and don't allow worrying to interfere with your life! You've got this!!!!!
Last but definitely not least: IF YOU HAVE ONE OR BOTH BREASTS, NEVER PUT OFF YOUR YEARLY MAMMOGRAMS!!!!!!
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ThreeTree, I took Tamoxifen for about 9 months after my low stage and grade cancer four years ago. I quit after finding a study that linked Tamoxifen to fatty liver, and I had that develop and show on a scan. Plus I had turned into a screaming monster. I've never been on an AI. I had arthritis before the breast cancer diagnosis, including having a left hip replacement in 2012. But since the breast cancer, and kidney cancer the same year, I have been in so much joint pain that I can barely cope. And it's EVERYWHERE. I'm wondering if just having cancer worsens arthritis or makes us more susceptible to it. Even my fixed hip hurts horribly. I had a nuclear bone scan this summer because my MO was concerned about the widespread pain, but nothing showed on that except badly deteriorating joints throughout my body. If I had the energy, I'd Google to see if there's any correlation between cancer and arthritis.
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That is so individual. I was diagnosed and treated for breast cancer in my left breast. I opted for a bilateral Mastectomy and the oncologist recommended radiation. I was 69 at diagnosed. I had a choice to take aromatase inhibitors. I opted not to because of the recurrence percentage. I have already decided I won't get treated if I have a recurrence—just a personal preference.as I am 72 now.
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Alice, I think that blocking almost all estrogen causes joint pain. I am not on AI but arthritis has become unbearable some days. Before my diagnosis, I was using estrogen pellets and had no problems. It has dissipated now so my pain has increased. Choose your poison, I suppose,. Breast cancer or advancing arthritis
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keywestfan: I am 70 and questioned my MO about why AIs cause joint pain since I already have osteoarthritis and osteoporosis. He told me that they degrade the cartilage in the joints over time and the damage that is done may be permanent. The osteoporosis is made worse by lowering estrogen and all those other side effects (including brain fog) are caused by that as well. He also couldn't tell me how AIs would affect a thyroid problem I have but did agree that estrogen deprivation could make it worse. According to my Oncotype my risk of 9 year distant recurrence is 12% with AIs and 20% without. He recommended the standard of care for me, 10 years of AIs, but told me the decision was mine to make.
I decided to skip the AIs and take the 8% extra risk (it's just a statistic.) I still walk 3 miles every day and that exercise is supposed to lower the risk of recurrence by 50%. Also, I suffered a rare but potentially fatal adverse effect (radiation induced pulmonary fibrosis) from rads. Oxygen and steroids stopped the progression of scarring in my lungs, but it could start up again and the irreversible damage has really affected my QOL. I had to retire from teaching (which I still loved,) use inhaled steroids to lessen the horrible cough that comes with this, and deal with fatigue on exertion. You don't expect stage 2 breast cancer to get you immediately, but I was given the "get your affairs in order" talk by my pulmonologist thanks to its treatment.
My MO supports my decision since I have valid reasons and know the risk I am taking, my BS (a 67 year old woman) understands my position, and while my RO initially scolded me for skipping the AIs he is now very nice to me given what happened. If I have a distant recurrence I will take the AIs but will live without the additional side effects until then. My lung problem means that most treatments for metastatic disease are off the table given the black box warnings about ILD, so AIs are about the only thing I would be able to take. I figure that they will work better and longer if I haven't used them previously. I also asked my MO who is a researcher to come up with something else I could potentially use in the future. He laughed and said he has a promising SERD without pulmonary SEs doing well in stage 3 clinical trials.
If I were younger I might have made a different decision but everyone has to weigh all the variables and do what is best for their situation. "Just getting older" is an easy excuse to not carefully analyze a situation. I might not live to 103 as my grandmother did but I'm going to try as long as QOL is acceptable.
mavericksmom, thanks for your post; I'm just as loquacious as you! Glad your surgery went well and I hope the healing continues. keywestfan, I hope the hip heals easily. I have managed to avoid this so far but between my mother and 4 siblings there are 12 of these in my immediate family and they are certainly stressful on your body. All the best to everyone else!
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Alice - That's an interesting thought, i.e. that just having cancer might in and of itself worsen arthritis. It would be good to see if there is any connection. I can sure relate to the no energy thing too!
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alicebastable and threetree: There has been a study done correlating knee and hip osteoarthritis with the occurrence of different types of cancer. While some types of cancer are less likely to occur in those with osteoarthritis, breast cancer (among others) is more likely to occur.
https://www.researchgate.net/publication/341599020...
I also found a paper explaining the biochemistry of aromatase inhibitors and joint cartilage. Cartilage contains aromatase so the AIs which block it cause reactions which break down the cartilage, hence the osteoarthritis. Another abstract mentioned that there are genetic markers found in people who are more susceptible to this which would explain why some individuals can take AIs without developing joint pain.
https://arthritis-research.biomedcentral.com/articles/10.1186/ar4539
My MO told me that one of his jobs is to try to prevent breast cancer recurrence so he always recommends AIs when indicated in spite of their side effects. However, he was honest with me when he told that they can cause joint cartilage to deteriorate. It's up to each person to decide the relative value of any treatment and its side effects.
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Maggie15 - Thanks very much for all of the info. Pretty interesting stuff.
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