TRIPLE POSITIVE GROUP
Comments
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Chachamom there is not "if you can get a copy of your path report." You are entitled to a copy so ask for one. I did ask my BS for one but I also got one (the complete final report) as part of my chemo binder without even asking.
BTW having a mixture of stuff is not unusual. I had only 1 tumor but 5.5cm was IDC the rest of DCIS making the total size around 6-6.5cm. They only used the invasive part or the largest invasive tumor for staging.
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Wow, you all have been busy.
Ashla....I believe you asked about anti depressants and tamoxifen. You cannot take cymbalta with tamoxifen. My doc also says no to benadryl with tamoxifen unless it is just on a are occassion. I ake effexor to help with the hot flashes. Used to do Pristiq but it wasnt helping the internal combustion. Effexor helps to minimize the flashes, although, I have noticed my bp has gone up a little and not sure if that is due to the effexor, tamoxifen, or something else. I am pretty active and exercise reglarly. My bp med is the lowest dose and it was perfect all through chemo. Just gone up a bit since I started the effexor.
I head out tomorrow afternoon for wake forest, where I will spend the week starting the vaccine trial. Husband will join me on Tuesday night, so we hope to combine a little fun also.
Talked to my onc about the sore lower rib. He wants to give it a couple more weeks to make sure it isnt surgery related, but said he will do a pet scan if the insurance company will ok it.0 -
Fluff, my rib area was sore after my te was placed and just randomly every now and then. And its only on the te side, not on the side where the te was removed. Doesn't hurt a lot, just achey. Don't know if that is something that you have?
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Mine is only noticeable if I touch it, so I really dont know how long I have had it. I thought it was sore due to the compression garment I lived in for a month after the lipo, but it doesnt seem to be getting better.
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Thank you for the links TonLee, they make for a very good place to start one's own research.
Ashla, I am taking the antidepressant Lexapro with Tamoxifen. It is one that is ok to take with Tamox. But I'll tell you, one of the side effects is difficulty achieving orgasm... and with being thrown into chemopause and the pain with intercourse I now suffer, it's been a real bummer. I'm also trying scream cream...Wish me luck!
What is the vaccine trail your friend is on, kayb?
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fluff, excited for you about the trial - looking forward to your updates as to how that goes. I hope that rib feels better soon!0
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NWArtLady I had that pain too. I went into chempause as well. I used Replens every day for a month or so as directed by my np then went down to 2 tx a week. Also used Astro-glide as needed. Now I don't use replens at all but I am over 1 year out now. It still a bit more challenging to reach orgasm but you will get there. I think that is normal after menopause anyway. But remember if you don't use it you lose it . If you have to get a vibrator to get things stimulated again.0
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Hey Ton Lee, was this based on lumpectomy or BMX patients? I had my period return, started Tamoxifen today but I did have a BMX. Although only one side was cancerous.
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NWart lady--my onc told me that I could NOT be on Lexapro with tamoxifen. Call your onc.
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Thanks Dancetrancer and Lago. I do have a copy of the path reports for the biopsy and the UMX. What wasn't clear was if the biopsy sample came from the IDCIS or the IDC. I THINK THE 2nd MO also wanted to clarify that.
Good luck on the trial Fluff! My sister in N Carolina has a friend who is an oncology nurse that was telling my sister about it. It sound very promising!
NWArtLady and Lago: I've also had a challenge achieving he big "O"......didn't connect it to the Prozac I started to take after dx! (BTW have been post-meapausal for 7 years and although we don't have sex as frequently as when we were younger, I've never had the issue of not being able to get to orgasm)
Thanks for the tips Lago...0 -
Thanks everyone, I appreciate the support
Because of the medium, sometimes parlaying information sounds like bossiness....Dragon, I am so relieved you are not offended by the information, and frankly, VERY happy you can now discuss these issues with your Onc. There are so many things to consider, I tell my husband I usually have only two choices, the gun or the knife. lol Both are messy and both suck.
NMoss, doesn't really matter if MX or lump if you're talking about the Ooph. What matters is being highly ER and pre-menopausal. There was no distinction of any note in most of the studies....the make up of the cancer determined tx. Does that make sense?
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A friend told me they are very close to having a Herceptin pill. Anyone heard of that?
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fluff i didnt know that about benadryl - I took 2 the other night because i had a hazelnut and my lips/throat were starting to itch and i thought i was having some sort of allergic reaction. DAMN! i am going to get an allergy test to confirm and i will not be taking any more benadryl - geez its all so confusing
re ooph, just some background, i asked 2 MO's both said they would NOT recommend due risk of osteo and heart health. I went to see my gyno and she said she does not know why the would say no. Her reasoning is that we are already experiencing these side effects due to tamox so putting me in surgical meno makes no difference. I know this goes against what a lot of MO's thinking is. Anyway I am on the fence if I should push for the ooph or not (my periods have not come back - if they do, I am with TonLee - the ovaries are coming out)
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Roze,
If your periods don't come back, then it would really be unnecessary surgery.
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LOL Lago, actually I just purchased one! I'll look into the Replens, as well. Thanks.
Wendyspet, I spoke to my onc specifically about Lexapro and Tamox and he stated it is one of the few antidepressants that do work with Tamox. Here is an article that backs this up: http://jnci.oxfordjournals.org/content/101/20/1370.full Thanks for bringing this up, Wendyspet. It's always good to doublecheck our oncs.
The Hutch is THE cancer research organization here in Seattle Kayb, I'm glad your friend got into the study and is doing well. Thanks for the link! I'll check it out.
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I just started on celexa and have been on tamoxifen since November. I was not depressed, but just extremely irritable and very easily losing my temper and flipping out. I was not having much in the way of hot flashes. The celexa has really helped. I am much more even now. I was also told about difficulty with orgasm on it, but I have had that since chemo pause started in April. Thanks for the tips Lago, I will give it a try.
TonLee, I appreciate the info as well. Just turned 49 and really don't think my period will be coming back, but it is always good to e prepared.
Good luck on the trial Fluff! Keep us posted.0 -
Kay I finished chemo at 49 a few weeks prior to my 50th. My onc tested me for about 6 months to be sure. She was so sure I went on the ESD from the start. 15+ months since last chemo. I know the ESD is working because I do have some stiffness in the small joints.0
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Kayb...seattle is one of the sites for the vaccine trial I am doing, but it is specifically early stage. The link you posted is not the stuff I am getting.
Rozem, the pharmicist in my oncs office said I could use it occassionally if I needed, but not to take it every day. There is a link somewhere that lists things that interact with tamoxifen.
Checked in at charleston, wv. Going to get up early and drive the last 4 hours for my noon appointment. They had a hard time getting blood out of me Monday, so I have been onstructed to drink large amounts of fluid. I figure that will add about an hour to my time, lol, as I will have to stop continually.0 -
Kitchenella - my MO said this summer they should be ready to release Pertuzimab which is a Her2 drug like Herceptin that comes in pill form. From what I understand, it can be taken with Herceptin. I know she has mentioned putting me on it as soon as it is released, which she estimated to be by June.
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Kelloggs, do you know if pertuzamab will be approved for early stage?
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TonLee, I get it.. I also got the big D 1st day on Tamoxifen... Yay...
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Thanks Omaz for posting that. I don't know alot about Pertuzimab except that my MO is pretty excited, said it is very promising and that she wants me on it as soon as it is out!
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I am one of the ones who's periods did return. Along with heavy bleeding, ovarian cycts, and a fibroid. Makes me miss chemo pause. I had uterine ablation done this morning to help with the 30-40 day long periods as a quick fix for now. I am currently researching having an ooph and alsways appreciate the differing opinions and information I get on here. I am planning on taking a year long sabbatical starting this summer. At that time, I plan to visit Moffit in Tampa to get a 2nd opinion on ooph benefits. My onc at University of Miami felt that there was not enough strong evidence for it. I respect her, but I also feel that it is important to make a well informed opinion. Tonlee, thank you for all your research. Never hold back.
Good news: My onc called this morning about my MRI results. There are 2 large seromas sitting on my chest wall near the top of my sternum. Pain mystery solved! She mentioned that my liver popped up on some imaging and that there are nodules present. She wants to ultrasound them. She did not seem concerned so neither am I.
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I'm guessing those of us who weren't able to finish Herceptin wouldn't be able to start Pertuzimab. Some of what I've read so far doesn't sound all that promising but great to know that research is continuing. I'll be discussing it with my onc next week when I see her. I still worry that I wasn't able to complete the Herceptin. Also, going to discuss getting de-ported.
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Day 1 of my weeklong stay for the trial. Bloodwork. They needed six vials. It is hard to find my veins. It took several sticks and 4 people to get to 6. First two were ok and then it just would stop.
Once that was resolved, the only other thing was an three small innoculations (like tb test) of the peptide. On Wednesday, they will photograph it and give me the actual injection of either the vaccine and the peptide, or the immune system booster, which is the placebo. I did learn that I have been randomized into the AE-37 arm, just wont know which thing I get. So far no big reaction.0 -
Roche / Genentech's Pertuzumab is a humanised monoclonal antibody (MAb) to the HER2 receptor that is currently in Phase III development for the treatment of advanced breast cancer.
Progression to Phase III clinical trials comes on the back of encouraging Phase II data, which suggest the addition of pertuzumab to Trastuzumab (Herceptin) can benefit breast cancer patients no longer responsive to standard therapy (trastuzumab plus chemotherapy).
In February 2012, Roche's Biologics License Application (BLA) for pertuzumab was accepted and granted priority review status by the US Food and Drug Administration.
The FDA fixed 8 June 2012 as the action date. Roche also submitted a marketing authorisation application (MAA) with the European Medicines Agency.
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x From what I read it will first be offered to those with more advance cancers, along with herceptin and chemo. One of the oncology nurses recently mentioned that soon the infusions would be human antibodies. From what I read it will come in a pill form. Who knows. I'm sure a lot of the information out there is like a wild fire.
I hope like everyone else it is the magic bullet to kill aggressive her2+ cancer.
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I'm not sure at first all early stager bc women will have the opportunity to take pertuzumab. From what I read it will first be given to those who have advance cancers where trauzumab wasn't as effective, and to those who have a recurrence of mets. I fear so many her2+ women maybe getting their hopes up and find that at least right now they can't get it.
I would like to try it in that herceptin has negatively impacted my heart. But, as I understand it will only be given with herceptin and chemo so that leaves me out.
http://www.gene.com/gene/news/press-releases/display.do?method=detail&id=13847
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The mechanisms of action of pertuzumab and Herceptin are believed to complement each other, as both bind to the HER2 receptor but on different regions. The goal of combining pertuzumab with Herceptin and chemotherapy is to determine if the combination may provide a more comprehensive blockade of HER signaling pathways.
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Talked to my doctor before my 3rd TCH and he told me that given my stage 1 status with no positive nodes, over 90% ER+PR+ and HER2+++, meant that most of what will cure me is the Herceptin and Tamoxifen and he felt comfortable that a 5th or 6th TCH wasn't going to buy us anything. He also said it is doubtful given how few women could be studied and the new drugs coming out in the next few years, that a true 4 TCH study could not be done.
Also talked to him about heart monitoring for Herceptin. He is willing to do it for me, but his concern was that there was a less the 1% chance of a heart issue, while if my heart function goes down a bit but within normal range and is reversible, he will still be forced to pull me off Herceptin which could be a greater risk of cancer reoccurrance. Tough choice! He said if I really wanted to have the echo, we could start after my 4th TCH. Not sure what to do yet, then again I haven't had a decision here that has been clear cut, just a lot of rolling of dice. I keep telling myself, well I have the Chief of Oncology at Duke, shouldn't I think I am in good hands?
Does anyone know the risk for having radiation in the left breast, in relation to the heart? Because that is another thing I am thinking about in my decision to either get the BMX or stick with my lumpectomy and get rads.
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f1_IT_Chick I would talk to a rad onc before you make that decision. They are the ones that have the most experience in this area. I also think the location might also make it an issue too.0
