TRIPLE POSITIVE GROUP
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Lago ,
I think they're heading in that direction for all of us on the hormonal therapies. For me, this has been by far the most difficult of all the treatments. I sailed through (relatively) the rest but I've hit a wall on the AI. My body is telling me no mas...
So happy for you:))))
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ashla I agree that the ESD had been more of a challenge although my issues aren't as bad as others. I knew when she said 5 years that would be. As someone who wasn't on any meds before this med has me on 2 other drugs now. 2 of the 3 give me SE.
I might just take it a year at a time. I will be taking another 1 month bread after 5 years just to see how I feel.
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Lago, what is ESD?
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ESD = Estrogen Sucking Drug (In Lago-speak)
I am postmenopausal (49 years old now) but remained borderline with my hormonal panels for almost 4 years and at my 5 years we decided to LEAVE me on tamoxifen for 10 years. My onc said the studies comparing leaving a postmenopausal on tamox vs an AI did not show a major difference, and I tolerate tamox relatively well. He did say that more long term studies were really needed.
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Lago...
It's my only med also but it's been an enormous challenge deciding what to do. Do I live this way or take my chances? Told my MO that we fixed the cancer but this med has broken everything else. I need a dozen more meds to ease my S/E's.....
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Aha, thanks!
I'm more concerned about the projected 10 years on Femara than I am with all the other treatments, but I'm trying not to cross that bridge yet.0 -
Geewhiz and JenPam,
Remember the problems I am having with the AI DO NOT happen to everyone. I had all the side effects from day one but they were very manageable until 2 1/2 years out. All of a sudden I hit a wall. Have no idea why.
My MO is putting me on tamoxifen in 2 months. He says there is only a 4% additional benefit to the AI.
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Thanks, Ashla...I know I'm borrowing trouble since I haven't even started hormonal therapy yet. I keep reading about terrible SEs though & have trepidation. It's good to know that I have the option to move to another category of drug. Why are you waiting two months to move to tamoxifen?
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It'll be the 3 1/2 year mark on anastozole and he's been seeing me every 2 months to see how I'm managing. First I had a month off and a bone scan to rule out mets. No mets & Felt great!!! Then he switched me to aromasin... I had said Femara but it was Aromasin...Every other day first week and when I went to every day it was worse . Literally felt sick.
Now we're doing every other day back on anastrozole . Not supposed to be done that way
Kinda think he wants me to hit the 3 1/2 year mark if possible. JenPam...They are making so much progress....especially for us Her 2 pos... That by the time you are 21/2 years out you may not need an AI ! they'll probably have new, improved treatments.
How I try to live these days. Sometimes I must remind myself.
"Let us not look back in anger, nor forward in fear, but around us in awareness."
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Thanks Ashla,
I figured if it ain't broke....
I get minor side effects from tamoxifen - hot flashes, joint pain off and on etc. I just mentally did not want to upset the apple cart at the 5 year mark and make the switch to an AI if tamox had bought me 5 years.
I am exactly 1 month shy of 6 years today, and I will take that pill forever if they let me.
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Geewhiz...
Wonderful news that you are hitting the 6 year mark . Just wonderful
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Anyone else here having bad joint and muscle pain, stiffness and leg, foot and toe cramping from herceptin/perjeta? Love, Jean
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zjrosenthal - are you taking your Femara? It is hard to say which of those things is related to what - also, how fast are your infusions? Sometimes getting a more rapid infusion of Herceptin can cause some muscle and joint pain, and a lot of oncs speed it up when you are done wit the chemo portion.. Any of my joint pain, stiffness, and toe cramping came from Femara - but I had some wicked joint and muscle pain from my first Herceptin only infusion run at 30 mins - slowed the subsequent ones down to 90 mins and had no further problems that I could correlate to Herceptin.
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triple + is still serious, my surgeon cleared me a few weeks back, but the 5 year plan is probably turning into 10 year plan depending on age. Seems protical is thinking this way according to the dr. We shall see, I for one will rejoice when they have the cure, and they release it. For now, just waiting patiently for me to feel good about this whole thing. Don't know if I could ever rejoice.
Glad lago you are at this point and free from this horrid disease. But on a whole all cancers are becoming prolific if you think about kids getting cancer before they are adults. Adults can't just die in there sleep anymore, it has to be horrific disease , accidents, or murders, or hate. Just in one of those moods, sorry for the rant cancer sucks. Tired of pain, aches, numbness, triple anything.
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greta and elaine, best of luck to both of you this week as you have your scans.
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Thanks, cassiecat. My MRI was unremarkable except that it took place in a trailer! This was at a health facility which is in a new building. What, did the architect forget to set some space aside for MRIs???? Anyway, I'll be able to look up my results on the hospital portal in a few days. If the MRI picked up "the thing on my hip," it will be biopsied.
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Good morning all. With exception of minor shaky and red face from steroids and chemo so far ok. See urologist later today. When I got my schedule yesterday I noticed that now I have to have labs drawn day before chemo now. I didn't do that for the first three. Anyone else?
Elainetheresa I hope your results from MRI are good news.
Txmom I am hoping this is not some complication!
SpecialK thanks for info
Moomfiwr912 I took AZO with a last infection or stone or whatever this was and the pain and pressure were much relieved!
CassiCat thank you
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Yes I am taking Femara but stopped for a few weeks with my docs approval with no change in se's. Just wondering if getting herceptin / perjeta for a year can cause the neuropathy and severe joint and muscle pain, stiffmess and cramping. I have finished 15 infusions with 3 to go. Love, Jean
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anyone get 4 cycle of TCH instead of 6 cycle? I wonder if all Her2+ needs to go through 6 cycles.
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I just got my second TCHP--was out the door in four hours. They cut Perjeta and Herceptin to 1/2 an hour each; is this normal during the first six cycles? I read the bags and they were marked with standard doses. . . .
Still no Neulasta or Neupogen. I guess my bone marrow did a good job on its own--my NP said my counts were "excellent," other than slightly-decreased hemoglobin. Anyone have any natural strategies for upping said hemoglobin? Red meat? Leafy greens? B12? Iron?
Lago, big congrats; that's awesome news.
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Hello, so I am just looking for opinions. My Mom will be 4 yrs stage 1 triple positive breast cancer survivor come January. Back in July her liver enzymes were high and they did an ultrasound and all they found was a fatty liver. She had her tumor marker test done the end of July and it was at 50. 6 months prior it was in the low 40s. She had a repeat test of her liver enzymes just last week and that went down into the normal range. She also had a repeat tumor marker test done on Tuesday and it went down to 49. Her oncologist is still recommending she goes for a cat scan of her chest and abdomen. Does anyone think this is a little aggressive?? He originally told her they don't start looking for cancer unless the number goes into the 80s or higher. She has always been slightly elevated ever since they started testing her back in 2012. I would also like to add that she was starting to have a lot of side effects from Arimidex, so she went off of it at the end of July right after she had the liver ultrasound. All of her side effects have subsided.
I have also read that doctors usually look for jumps in the numbers, like more than 10 or 20 points at a time.
My Mom is thinking of not going for the cat scan and just asking to get the blood work repeated again in another month. I think she is just tired of getting pricked and prodded.
Thanks in advance for reading my post!
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congratulations largo!
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laols9n, if my doc recommended a scan, I would go for it. They aren't invasive but if something is going on, the earlier it is found the better. Also peace of mind if nothing shows up. My opinion only, take or toss. Love, Jean
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laolson- how is your mom's diet? There are many possibilities but if your mom has a fatty liver, one possibility might be that her remedy could be well within her control.
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rhp268 - My Mom's diet has been better ever since they diagnosed her with the fatty liver, but I am sure she can make some more improvements. I do have a call into the nurse at the oncologist's office. I think if there was truly a concern from the results of her liver ultrasound back in July, they would of pursued something back then. I do not understand why now they would want a catscan. My Mom is almost 70 years old and would prefer not to be pricked and prodded everytime there is a slight blimp in her bloodwork.
I truly think the Arimidex caused her liver enzymes to rise. Since now that she has been off the drug for a month, her numbers coincedentally come down. She also experienced high blood pressure, stomach issues, and a persistent cough while on Arimidex. All of these side effects have subsided. Her blood pressure is now back down to 130/80. It was as high as 160/90. I want her to have the most protection from her cancer coming back, but at what cost? She is planning to go back on Arimidex in another month. We will see how long she lasts. She has been on the Arimidex and Aromasin on and off for 3 years. She was on Arimidex this past time for about 6 months. I find it strange that her Oncologist never seems to correlate her side effects to the drug. He would rather just order another test.
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Laolson I would do the scan and keep,up the blood work as well. Scan won't hurt to do.
All went well at urologist! Ultrasound was clear best guess was I passed a stone last time. Really liked the doc. Praise God! I am shaky today. Third day out from third TCH maybe steroids are hanging out in my body today!
Have a great day ladies
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lago: congratulations and have a good labor day weekend.
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KateB79 My first Herceptin I got a slow drip that they kept speeding up because I didn't have a reaction. After that it was always 30 minutes.
laolson18 my oncologist doesn't do tumor markers for early stage. She says they are unreliable. Scan might not be a bad idea due to fatty liver but I really don't know for sure. 70YO is not all that old.
thanks again for all the congrats!
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Gretagirl -- Great news! Looks like this week was our lucky week. Just got my MRI results about that "thing on my hip" that lit up on three separate PET scans: "There are certainly no significant signal changes or enhancement that would explain a metastatic lesion in the femur. Specifically, no convincing evidence for mass in the area of abnormality by the PET scan. Although PET scan is more sensitive for metastases, the findings are likely a false positive. It may be reactive from low-grade musculoskeletal inflammation or adjacent soft tissue inflammation that is not readily apparent by MRI or has resolved. Otherwise, the femur is intact without mass or suspicious enhancement." Looks like I'm NED....for now!
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