TRIPLE POSITIVE GROUP
Comments
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Cami, my dr told me today to stay away from alcohol, too! And fatty foods! Oh no! What a way to celebrate the holidays.
Im supposed to get herceptin tomorrow but my liver enzymes went over the roof. More than five times the high normal. Does anyone know if this is maybe due to the drinks i had two days ago? Do liver enzymes rise up that fast and that high with just a night of moderate drinking? Maybe i had 6 shots of whiskey. Just this one time ever since dx and it got me! Now i cant even eat of the christmas ham. So much for trying to be "normal".
Anyway, welcome newbies, and truly, a merry christmas to all!0 -
Sorry I've been MIA for a little while too. This past chemo last Friday wiped me out. Nauea, Fatigue and weakness. Just walking across the room felt like I had run a marathon! Two treatments left. Good news, my WBC was almost normal, and my hemoglobin is holding ar 10. So, not sure why so fatigued. This morning is talk to mental therapist morning. My MO said no to a lot of the recommendations for sleep, and hot flashes and mood. Meh! Put me on Effexor, and i took it for two days, but I'm reading some bad and good things about it, so stopped it until I talk to her.
Hope everyone is doing good. I am going to try and catch up on some posts.
Congrats Lago!0 -
Hi everyone and a special hello to all my BCO friends from 2010/2011! I still follow the thread all the time but I rarely post these days. It's always such a comfort to read posts from Omaz, Tonlee, Lago and SpecialK among others. We have such wonderful support here.
I've been feeling more and more like my old self all the time and enjoying life to the fullest:) Honestly, I didn't start to feel good overall until the 1 1/2 year mark.
So here's the curveball. I'm 19 months PFC now and I've been on Tamoxifen for 15 months. I'm 43 now and I have not had a period since chemo. So, a few weeks ago the Gyn ordered a pelvic sonogram based upon the risk of problems from Tamoxifen. I didn't hear anything so I figured no news is good news. Then they called me last night with the results and said that there is a thickening of the uterine lining, they are concerned and they need to do a biopsy. It's scheduled for Jan 8th.
I haven't even had the heart to tell DH yet. He's been making so many comments in the past few months that "we have our life back", "we're putting this behind us" and he's so happy that I'm feeling better again and I hate that I'm back in that place of worrying, waiting for a test and waiting for a pathology report again. I will tell him this weekend but I hate BC and the neverending threat of cancer that hangs over us. Just when I was starting to get a small sense of security about my health again.
I'm very hopeful that the biopsy will be negative and that this is nothing to worry about but that's what I thought about the BC biopsy and look what happened. It's hard sometimes not to feel like the odds are against me. Anyway, I'm wondering if others have had this happen after being on Tamoxifen for a while. Did you have a biopsy and what was the outcome?
Tonlee, you are in my thoughts and I hope that you receive good news.
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Hi Dragonfly - Good to hear from you!! I am also on tam but I am 10 years older. My gyn ordered an ultrasound at my last visit but when I asked the onc PA about she said that the risk for uterine problems was primarily associated with long term use (so I didn't do it). But I think my situation is probably different from yours, on tamoxifen I apparently don't make (edited to say 'hardly any estrogen') any estrogen so I am 'post-menopausal' but when I switched to the AI femara my ovaries started making estrogen again. I had to switch back to tamoxifen. We checked because my hot flashes suddenly started diminishing. Apparently for about 10% of women with chemotherapy induced amennorea (sp?) some AIs can cause recovery of ovarian function. Anyway - what I was trying to get to was that I think I am taking the tamoxifen in a very low estrogen production environment. You may be making more estrogen since you are younger and that may be interacting with the tamoxifen. Whew - that was a lot to say!
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DragonFly: Nice to see you again. You are in our thoughts. That darn Homone Sucking Medicine that we have the love/hate relationship with. My last chemo was June 6, 2011 (funny how those dates stick in your brain) and my last (#10) Herceptin was November 2011 so we are on a pretty similar schedule. I'm older and post-menopausal and started Arimidex September of 2011 and starting to have problems with it that I need to address with my onc next month.
Our thoughts are with you and hoping it is nothing!
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Omaz, I understand what you are saying. They haven't checked my hormone levels in a while but my hot flashes are rare now so it makes me think that I have a decent amount of circulating estrogen which is never a good thing with ER/PR+ BC. I'm also spooked because I have had a chronic discharge in recent months as well as painful intercourse which can be symptoms of uterine CA. This is different than the vaginal discharge I had in the initial months on Tamoxifen-that eventually resolved. On a positive note, I have had no periods or bleeding that are often attributed to uterine CA. I'm probably just overthinking but I can't help it. Having a biopsy is unnerving.
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I don't know if any of you ladies are using the Sea Chi products (which are great by the way) but they are having a 50% off sale. I started using their hair products after the ElastoGel caps and love their products. If you order anything, use the coupon code of WINTER2012.
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Port will be put in during surgery, which is only 7 days away. I can't wait to get this tumor out of me. Got my MRI results yesterday which showed no abnormalities in the nodes, but I'm a little worried that the tumor is posterior depth. My husband is researching the cold caps and I want to try it. Thanks for all the great info.
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dragonfly - Hi!!! Good to hear from you, but sorry that you have a worry. I am glad you are getting this uterine thing checked, it is smart not to ignore it. Hoping it is nothing, and wondering if you can do Lupron and an AI instead of the Tamoxifen. I believe that I have read of a fair number of ladies who had the uterine thickening which turned out to just be that and nothing else, so hoping for that for you - but it does raise the question of what to do going forward. Sorry that you can't have the biopsy until January because that means waiting - which we all know is hard.
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Dragonfly - No question about it, it sucks to have a biopsy. I developed a dark spot in the radiation field that my derm removed to check. She said anything new on the skin in the radiation field has to be considered as a problem. It was ok. I hope it is nothing for you but justy thickening like SpecialK said. Can you ask your onc to check your estrogen levels?
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Omaz, first I'm going to ask the Gyn to re-check the hormone levels because I'll see her for the biopsy. The levels were last checked in March. If she doesn't want to do it I'll ask the Onc when I see him again in Feb. I've got so many doctors at this point that I'm sure someone will order it:)
SpecialK-Hope you are doing well. Yes, I'm hoping that the thickening is nothing more than a SE and not a more serious problem. My Gyn is vigilant in checking for potential problems but she's not quick to make any suggestions about the Tamoxifen. I think she feels like it's up to the Onc which is fine because I trust his opinion. I guess I just need to be patient and get more information so that a decision can be made. I also worry because I have a history of 2 abnormal pap smears with pre-cancerous areas that had to be surgically removed. My immune system does a rather lousy job of fighting off cancer it seems.
Oh well, I'll regroup and try to put this to the side so I can enjoy the holidays. I'll also post when I get results in case anyone else ends up dealing with this.
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Dragonfly and SpecialK - I wanted to add that I didn't do the uterine ultrasound because my onc PA said I didn't need to - I don't have any indications - the gyn ordered it simply because I was on tamoxifen and she had heard about the increased risk of uterine cancer with tamoxifen. If I had any indications (like discharge or bleeding) I would have done it and the onc PA would have told me to!). I don't think I made that clear!
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dragonfly - so sorry you have this to worry about. I'm new on Tamox, so can't offer any personal experience with the uterine thickening issue. I just wanted to share that my RO told me if I end up not tolerating Tamoxifen well (I've had other issues) that Raloxifene is an option to discuss with my MO. She said it will block estrogen like Tamoxifen, but does not have the urogenital side effects. The only issue is it only prevents recurrence of IDC, not DCIS (Tamox prevents recurrence of both). So, that is an option to consider if you decide going forward with Tamoxifen is too risky. Hoping all turns out well on your biopsy!
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Dance: Funny thing (well not really) is that I was on Evista when I was diagnosed with BC. I suppose had I not been on it, things could have been worse. I was on it to improve bone density. We are all so, so different as one thing works well on one and not so on another. Now I can't take the Evista because the onc says it fights with the Arimidex as I'd love to take it because I had NO SEs from it!
Arlene
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hi dragonfly...nice to hear from you!
i have also had diminishing hot flashes while on tamox, started out have sopping wet flashes and now next to none. I have had my hormone levels checked a few times and it always shows that i am in menopause. The thing is that i was told this is not reliable because of our age, we can "snap" out of meno pretty quickly. Thats ok as long as you are on tamox, if you are on a AI this is dangerous because AI's do nothing if you are pre-menopausal. Its so difficult at our age to know what to do...some floating estrogen is good because it protects our bones/heart but then we had a cancer fueled by it. My oncs still do not think i should have my ovaries removed. As for uterine lining thickening, yes it could be a symptom of coming out of menopause - my gyn said mine was "nice and thin" which she said is a sign a menopause. But the tamox is still protecting you. As for uterine CA - the thickening does not necessarily mean CA -
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dragonfly1. I started Tamoxifen August 1st. I have had a Tamoxiden enduced vaginal discharge since. I have to wear panty liners and change it 2 to 3 times per day. My GYN exam was ok. My question is how long did it take for the original vaginal discharge to stop? So sorry that you have another biopsy to worry about. Prayers that bx is good news.
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Hi Dragonfly, I also read some ladies' post about thicking in uterus that did not show CA yet. but it is certainly something that causes concern. My period also stopped after chemo. I have two US done on uterus when I am on Tam. Although no thicking, but my hormone levels were going back to normal from April to Nov 2012 and I saw some brown discarge in late Nov and had familiar feelings I had before when I had period. I had a total hys on Dec 3rd and the uterus turned out to be larger than US showed and it took longer time than usual for the gyn to have it taken out from vaginal so I lost a lot blood during surgery.
Now I could switch to AI but Omaz mentioned the the AI could actually promote the productions of estrogen. This is the first time I heard it. There is so much information out there we are not aware of. I had my ovaries removed too. Although I am not sure if it is a good idea to have ovarie removed at 41 but I did not have period anyway so probably that there is no difference?
I am wondering if it is worth the SE for post menopausal ladies to take AI for 5 years? I know we are in a high risk group but AI could not take care of Her+ and the estrogen levels were very low for menopausal women. I have a friend who had a total hys at age 48 and No CA found in her uterus. So she did not take any medicine after that. She is 65 now and doing fine. I will switch to AI at my next appoint in Jan but just struggle about if I should take it and have further problems from it or just do not take it at all. I know most ladies and all doctors would rather to take AI but just my thoughts.
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meglove - Some AIs like letrozole can cause the ovaries to start making higher levels of estrogen again if they stopped due to chemo. Since you had your ovaries removed you don't have to worry about it!
Here is a link to an article about it LINK called:
Adjuvant Aromatase Inhibitors for Early Breast Cancer After
Chemotherapy-Induced Amenorrhoea: Caution and
Suggested Guidelines0 -
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SAN ANTONIO – Researchers have taken a first stride toward the goal of developing a gene test that predicts a breast cancer patient’s likelihood of a favorable clinical outcome in response to adjuvant trastuzumab.
A massive gene expression profiling analysis of baseline pretreatment tumor specimens obtained from 372 breast cancer patients identified 32 genes that correlated strongly with 5-year relapse-free survival, each with a P value less than .001, Dr. Edith A. Perez reported at the San Antonio Breast Cancer Symposium.
The ideal thing would be to find a gene that, if highly expressed, predicts for benefit or not of Herceptin [trastuzumab]. We are on our way to developing a predictive test that can define the right treatment for individual patients, and that is very exciting," declared Dr. Perez, deputy director at large of the Mayo Clinic Comprehensive Cancer Center and director of the breast cancer translational genomics program at the Mayo Clinic in Jacksonville, Fla.
In all, 27 of the genes were associated with good outcome, while the other 5 correlated with poor outcome. The major functional categories these genes are involved in have been identified: cell receptor signaling, chromatin structure and transcription, control of cell death, cell cycle, Wnt/beta-catenin signaling, and lipid signaling. It’s not yet known whether these 32 genes are expressed in the epithelial or the stromal component of the tumors, and it will be challenging to figure that out, she said........
Discussant Dr. Dennis C. Sgroi called this work tremendously exciting. He noted that trastuzumab is a very expensive drug, and roughly 25% of treated patients relapse within 5 years. Trastuzumab also carries a risk of cardiotoxicity, and he was intrigued by Dr. Perez’ suggestion that the investigators believe they may have identified baseline tumor gene activity signatures predisposing to symptomatic cardiomyopathy and transient asymptomatic drops in left ventricular ejection fraction."..........
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Great find Ashla. Things are moving so quickly!
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DragonFly - over on several of the Tamoxifen threads there are heaps of women who have had the uterine thickening with biopsies and procedures to clear it. Not many of them have had bad outcomes - only one that I remember seeing that had some sort of cancerous changes and she had a hysterectomy and then was put back on Tamoxifen since there would no longer be any risk of uterine cancer... Lots of doctors recommend an annual pelvic ultrasound while you are on Tamoxifen since the thickening (and ovarian cysts) can be quite common...
So, I have been busy at work, still visiting the chemo suite every three weeks for herceptin, and having a bit of an emotional breakdown which meant a couple of visits to the psychologist and the psychiatrist at my centre in the past couple of weeks. The psychiatrist listened to my story the other day, told me that she doesn't think my constant tears are depression but are a warranted release of all the stresses from this year. She said she's never met anyone who had managed to keep working full time through chemo as well as all the other "balls" I've "juggled". I'm trying to follow her suggestions and I'm actually beginning to feel a little Christmassy instead of just sad :-)
I told you all quickly yesterday that I had my ovarian cyst surgery on Thursday and it was quite quick. Wanted to elaborate a bit in case anyone else ends up needing this surgery after a reconstruction...
Called back for surgery at 3.45pm and was finished, dressed and back in the car on the way home at 6.30pm!
The surgeon ended up not having any problems with the mesh in my abdomen from the recent free TRAM reconstruction, although because they knew it was there they planned my three incisions in different places than usual - upper left abdo (under my left breast) and just above my belly button (normally they would go in right in it but because it has been transplanted upward during my previous surgery my PS was worried it would "die" so asked the gynae surgeon not to use it). The last incision was exactly along my free TRAM abdominal incision, so I only get two new scars out of this!
The ovarian cyst ended up not attached to the ovary at all, but gently attached to the fallopian tube and the surgeon was able to remove the cyst without removing my ovary! The surgeon has said that due to its position he thinks there is "almost zero" chance of it being malignant, but I'll believe that when I see the final histology report. I'm not worrying much about it anyway and I won't get the report until my follow-up appt with the surgeon in 4-6 weeks. I imagine if it did turn out to be something serious he will contact me sooner.
Managed to get out to the shops yesterday morning and out for dinner with some friends last night. Bit bruised and sore but this really has been amazingly not bad compared to so many things this past year. I think it would have been different if they had to take the ovary as well. The incision that is the most sore and bruised is, of course, the middle one that is right where waistbands hit :-/
Hope you are all having a good lead up to the holiday and New Year! Big hug from me, specially to all of you still doing those first chemo rounds and waiting on tests and results (which at the moment seems to be almost everyone!)
Jenn0 -
Dragonfly I'm sorry u'r going thru this ordeal---I have heard of this and it did come out all right--who knows what all these meds really do to all of us--we take everything so differenty. So if u can let the Drs. worry for u, u know they'll take good care of u and I truly hope u can enjoy u'r friends and family for the holiday season.
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Omaz - great info!
Jenn0 -
Geesh Arlene! How about that. I wonder if it is prescribed the same or differently for osteoporosis vs breast cancer prevention. The would be the only thing that maybe could have been different? Otherwise, yeah...makes one wonder how much it helped.
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Dance: I'll be asking my onc that same question in a few weeks.
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Ok. I have a stupid question after all this talk about dragonfly's uterine thickening, etc., and I know there has to be an answer. Why doesn't everyone who is ER+ have their ovaries removed after chemo? I know some do, but I also read that some MO's don't recommend it. In that case, why not just have a complete hysterectomy so no worries about uterine lining? I am 40, and have 5 healthy children. After BC, I'm thinking I'm probably done with having kids, so what do I need any of that for anyway? See what I'm saying? I know it's probably not that simple, but my thinking at this point (still in neo-adj chemo) is that I just want all estrogen producing organs out after all is said and done. Can someone bring me up to speed on this?
Btw, asking for prayers for next week - having a repeat brain MRI due to frequent headaches. They saw a "lesion" on my pituitary gland on my last MRI, but it was inconclusive for cancer. It did not "enhance" with the dye? So I'm hoping it hasn't grown or changed.0 -
nickythebean - the uterus plays an important part in structurally supporting the internal organs in your abdomen, including your bladder. By removing it you run the risk of bladder prolapse in later years.
My MO said she felt that adding an operation for removing the ovaries would have more risks than benefits in the long run.
On a personal level I feel like breast cancer has cost me enough bits already...
Jenn0 -
Jenn - You sound so much better! Keep that Christmas spirit going! I am really looking forward to being with family and soaking up good Christmas vibes. Very thankful Christmas is falling in my third week and that I feel pretty ok. If you have any tears to share, I will take some; for some reason I haven't been able to cry about any of this since my diagnosis.
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