How about women over 70
Comments
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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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