TRIPLE POSITIVE GROUP
Comments
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HapB, I see your point. I don't know if this new drug is worth the SEs for me either. I assume I'll be eligible for it when I complete my one year of Herceptin in October. I am so looking forward to finishing my treatment -- the thought of continuing with something else doesn't appeal to me. I'll see what my MO thinks when I see her again in a couple of months.
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BellasMomToo,
I think I could do without the severe diarrhea experienced by 40% of the women, too!
Ugh.
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KB870,
Yes, hormonal therapy also has a lot of side-effects for a small increase in survival rates. Fortunately, I find Aromasin (exestamane) tolerable. If my MO suggested Nerlynx, I would certainly think about it and maybe try it. I could always hope that I was part of the 60% that didn't get severe diarrhea. One of the best things about daily pills is that you can try them, and if they're intolerable, you can simply stop taking them.
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Elainethere: Love that your looking at the postitive when you said "I could always hope that I was part of the 60% that didn't get severe diarrhea."
When I read about the percentages of reoccurrence in triple positive women, I like to think I will be in the higher percentage of people who don't!
Bella'smom: I know exactly how you feel, I am ready for this treatment to be over and wouldn't look forward to something else. Granted, I would do it if necessary, but I will cross that bridge when I get to it!
HapB: Liver damage is def something to consider!
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Saw my MO today and asked for his opinion on the Nerlynx. He thinks the side effects are too severe for the low percent advantage. He would not recommend it to his patients. Also, the study didn't include Perjeta. The HP protocol has better results with less severe SEs. In his opinion.
Herceptin and tailbone pain - in my case he thinks it started with the Arimidix and he's perplexed as to why it's still bothering me. I only have 3 more HP infusions so if it goes away when I'm done then we'll know for sure!
Hope everyone is doing well....hugs and have a peaceful day
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very interesting deni...it dose seem to be very little benefit with nasty side effects...
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hap - this is the study abstract, with the actual numbers, and the side effects sussed out.
http://thelancet.com/journals/lanonc/article/PIIS1470-2045%2815%2900551-3/fulltext
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hap - it appears the way they are currently approaching use is to administer this after Herceptin as a recurrence prevention, not sure it would be used in place of, which is more of an active systemic treatment. A bit apples and oranges, perhaps. This is more like use of anti-hormonals to control the estrogen receptor fueling, this would be to control the Her2 overexpression in a more extended adjuvant manner.
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I just came off of a clinical trial for Nerlynx in February. I knew I was getting the actual drug and not a placebo, they were mostly trying to figure out what dosage of anti-diarrhea meds to give. I really didn't have much trouble tolerating it and didn't have many diarrhea episodes. As soon as I could completely stop them, I did. But the nurse coordinator told me some folks wouldn't even try to go without the anti-diarrhea meds. So basically it just seemed to me to be like all the other treatments and meds we've taken, where we vary so much in side effects. I saw it as just another tool to have in my bag to fight reoccurrence. As long as I felt okay and tolerated it okay, I was fine with taking it. I figured if it didn't help me, maybe it would help someone else down the line. And also I figured at least I would get another year of being a little more closely monitored and screened. Now I'm on an every 4 month check with my MO for blood work and checkup.
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I met with my breast surgeon and he did an ultrasound on the lump above my collarbone. He said he saw calcification and when I asked him what it could be, he said it's very likely metastatic breast cancer, metastatic thyroid cancer, or lymphoma. Not exactly the news I wanted to hear. When I asked him if it could be anything benign, he said it's possible that there were cancer cells in that lymph node the whole time and the chemo that I just went through (TCHP) killed it. He said the body's reaction to the dead cancer cells could be to wrap it in scar tissue. I obviously want to believe the latter , but I'm concerned because he never mentioned it initially. I did have a biopsy done on it while I was there, but i won't get the results until Tuesday. Has anyone ever heard an explanation like that before about dead cancer cells? Is it possible for a tumor to grow while on chemo?
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Keeping you in my prayers, Soxfan75.
Also, I have heard from Denise in TN. She wanted all to know she is doing well.
Coach Vicky
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Soxfan75,
I have heard the "dead cancer cells" explanation before. Some women go through neoadjuvant chemo, and their lump doesn't seem to shrink appreciably. However, when they have their lumpectomy/mastectomy, their doctors discover that their lump was nothing but dead cancer cells by the time for surgery.
It is possible for cancer to grow during chemo. Sometimes, the prescribed chemo does not work for your particular variant of cancer. This is one of the arguments for neoadjuvant chemo -- it may show that the chemo in question isn't working.
Hoping that you get good news from your biopsy!
P.S. I've been a Sox fan since 1975 as well. (I was a Dwight Evans girl, but my brother loved Jim Rice.) Makes me feel old....
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Hi Tadover,
Thanks for sharing that! I totally agree with you. It never hurts to add another tool to lessen the chance of reoccurrence. Thanks for being a part of that clinical trial. I'll be asking about this study at my next visit.
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Thank you ladies for the information. One thing I forgot to mention because I just remembered it myself was that yesterday I had a CT scan as part of my radiation treatment planning. I mentioned the lump to the radiation oncologist and it did show up on the CT scan. He then went and looked at my scan from after my surgery but before I started chemo and he said it was on that scan as well. If it was cancer at that time, wouldn't it have shown up on the MRI that was done? Is it possible they missed it? I was thinking that if it was obvious on the CT scan, wouldn't it be obvious on the MRI?
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Soxfan75,
Did you just have a breast MRI or a full-body MRI? A breast MRI focuses on the breasts and axillary lymph nodes.
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ElaineTherese - I don't recall, but I remember my MO mentioning two spots on my liver that she didn't believe was cancer. That must have been a full body MRI, right?
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SoxFan75,
A breast MRI is done on your stomach with your boobs hanging down; you hear lots of loud noises and have to stay very still. Other MRIs are done on your back, as are PET scans. But, with PET scans, there are no loud noises; you just lay there very still.
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ElaineTherese - It was on my stomach so it must have been just a breast MRI. I guess I'm just grasping at straws at this point.
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Soxfan75, I understand your anxiety. The waiting is the hardest part. We have all been there. I hope you can relax this weekend and be rested up to receive a good pathology report. Sending positive thoughts.
Coach Vicky, thank you for the update on Denise. Nothing easy about embarking on the 6 stop TCHP journey. Good to know she is doing ok.
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I'm pulling for you, Soxfan.
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Hallo all, haven´t been here for awhile...and that is good news...I use to be here all nights long 6 months ago and it helped a lot...remember most women that has gone threw it and can tell you; You can do it! are not lingering around anymore, they are out living life. A word of courage for all those just going threw chemo and are in the mist of treatment. I went to my yearly onc meeting yesterday. One year has past and I am so much stronger today even though I still receive herceptin (got 3 more to go). He told me they would do a check once I am done with that with ultrasound. Now starts year 2, also a crucial year for reaccurances, he reminded me to check my scar and my armpits for lumps every other week moving forward. Also if I get some swelling on my legs (not sure why), in that case I should call asap. Yes, it is an aggressive form of cancer and I got reminded of it, but as time goes I can assure the worry lessens each day a little more and life can slowly start again. Saying that I have been an extreme worrier to the point of almost going crazy with it. Some things I am noticing after this year is fatigue, but I am trying to walk more and getting my exercise routine in order is my next goal. Finding myself having more calmness to think about diet and things that would make my life more healthy. During treatment I could not even walk up a few stairs without loosing my breath. Normal. Pain in bones. Normal. It takes time for all this poison to leave the body, it takes time to recuperate. People say it is not a sprint but a marathon, that is true. It gets better and I thank all those who has gone before me. Life has changed for ever. What use to be important feels ridiculous. I am changing my job. All power to you all and thank you for being there in my darkest moments.
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hi all,
i am one week postop. main issue is tightness and heaviness. i have asthma and its hard to breath sometimes,hence i am still using pain meds and my asthma inhaler. not much appetite but taking protein boost.had herceptin only infusion yesterday and reflux is acting up. was told SNB were negative for cancer. willget full pathology report on tuesday when i follow up .drains hopefully will be out friday. took first shower today after wound vac removal yesterday and it felt good. God bless to all. it is a marathon.happy weekend
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Kattis894
Thanks for posting ... a great message of hope for us all.
Vicky
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thanks hap
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Kattis,
So glad to hear from you and about your new lease on life! Hope you find a meaningful new career for yourself.
Jumpship,
What % ER+/PR+ were you? My lump was apparently 95% ER+, 95% PR+. That motivates me to take my hormonal therapy. However, if my percentages were lower and I were having "lifesucking" side effects, I would be more likely to reconsider. Sorry to hear Tamoxifen has been such a drag....
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jumpship,
dont have any advice but lupron gave me the same effects. when i had my bmx last friday,i purposely did not give myself the shot that was due the following monday. i know i cannot recover well from bmx if i ache all ove esp my joints. i would not have handled the pain from it and the pain frombmx. i did call my onco to ask her permision to be on lupron break but she never called back. oh well, i will just discuss it with her on my follow in 2 weeks. in fact ,i am not sure if i want to take lupron ever again. quality of life matters... sorry you are having bad effects from tamox...
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Kae md99, congratulations on your node report card. PCR and NED! Hang in there as every day gets better.
Kattis, thanks for the update and best wishes for your new normal.
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Jumpship,
Tamoxifen is a systemic treatment meaning it not only reduces your chances of a local recurrance, but also reduces your chances of developing metastatic breast cancer.
At this point you are assumed to be cancer free, but there is no way of knowing if there are still microscopic cancer cells hiding out in you bones, liver, lungs or brain. These are the organs bc is most likely to spread to.
Deciding when side effects are affecting your quality of life too much and choosing to discontinue treatments is often a difficult decision. There are many threads dedicated to this topic if you want more info or insight.
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HapB,
I'm on Arimidex and doing ok. For me, the side effects were like repeating the fun of menopause one more time. The hot flashes were bad in the beginning, but I only have them occasionally now. The biggest issue for me is dryness in the lady parts but coconut oil is helping in that area. I think that when you are post menopausal when staring AI treatment the drop in hormones is not as great as for the younger gals, so maybe the side effects are not as bad???? Anyone agree or disagree?
I am on the generic form of Arimidex - Anastrozole. I have read here many times that often the side effects are caused by the fillers in the drug and not the actual drug itself. TEVA is the brand that is recommended as being the most tolerable so I have instructed my pharmacy that I only want TEVA brand and they are to notify me if they change. I also check the pills each time I get a script filled.
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I've been on the same drug for almost 3 years. The first couple months were hard, but I can't say that all my symptoms were due to the arimidex as I had just finished taxotere and carboplatin (nasty stuff), was still on herceptin and had a 13 hour DIEP flap reconstruction right before starting the drug. Yes I had aches, pains and fatigue, but who wouldn't after all of that!
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