TRIPLE POSITIVE GROUP
Comments
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Well done Iago! And the photo is brilliant!
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Moonflwr912 when you get a BMX you get nodes removed as well. Even if you don't get any nodes in the arm pit there is still a very small risk of LE from an MX or BMX because they do remove nodes. Nodes are all over your body. Some people even get trunkal LE but again not as common.
NickyJ In that photo the 2nd from the left is our local News reporter, a 7 year stage IV (HER2+ ER-/PR-). She was the one who interviewed me last year the moring before the walk (5:30 am!).
BTW if anyone wants to donate contact me off-list. I'm not allowed to post that here. breastcancer.org is also a non profit so it's not good manners. If you want to donate to breastcancer.org look for the button on the top right of this page.
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Hate reading about the crap insurance companies give people going through this. Even those with so-called "good insurance" have to fight with them constantly, and we all know that's the last thing someone going through this should have on their plate.
Rozem and kayb - thanks for the ideas on the tamoxifen/zits. Roz, I didn't know Teva/Mylan are now owned by the same company - I guess that changes my worries about witching between the two. I saw dermatologist yesterday, and I hadn't seen her since pre-dx, so I had to explain the whole ordeal, which sent me into a crying outburst (amazing that 1.5 years pfc this can still happen to me - like I can't get the words out sometimes without crying). She was very sypathetic & understood that break outs are making me miserable. She said she does blame the tamoxifen, but said there are option we can try that will not interferre at all. I have scripts to fill today - one for an oral antibiotic and one for a topical. She said they are the best (no generic available), and gave me discount cards - I'm sure my ins co is not going to pay. In which case, she can give me something else or I'll just have to pay for it. I"m so beside myself over this, I'll probably just suck it up and pay. I have to give it a month to see if it works and I'll let you know, in case anyone else is experiencing this.
Lago - which brands are made in India and how would I know? Great picture of you.
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BabyRuth, so thrilled to read that you had your first cyber knife radiation session, and that it was not too taxing on you.
Lago, thanks very much for posting the axillary node diagram; also, all you gals in the photo you posted look terrific. Well done!!
Beautiful weather here in Toronto, and we are looking after a pool for our friend, starting tomorrow, so I shall mosey on over there tomorrow,with DH and my two sons, get my Vitamin D (for newbies, I posted an article in the late spring stating that especially for women who live in northern climates, exposure to Vitamin D, helps us to better metabolize Tamoxifen. The recommendation was to be in the sun, without sunscreen, for 20 minutes. The sun is not strong enough, in northern locations, to promote production of Vitamin D from mid-fall-mid spring, but I believe your body can store what it makes, and what you make is better than taking supplements {although supplements have their place}), and enjoy living. Have a wonderful weekend, all you ladies, facing treatment, in treatment, recovering from treatment, survivors of treatment
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gratitude - im in toronto aswell!
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Yay! Congrats Lago!!! What a good thing you are doing for others!
Ladies, I have a question, I just got back from my 10th Abraxane {same drug as Taxol, different form}/ Herceptin treatment and it's the first time I have ever had elevated {slightly} liver enzymes.
It says right on chemocare.com that's it's one of the common side effects of Abraxane, but it's still freaking me out! I need someone to talk me down!
Thanks in advance!
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U look great lago
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Thanks everyone. The young gal isn't a survivor. She lost her mom when she was 15 (mom 47) to breast cancer. She too is a real champion for the cause.
Shore many drugs are made in India… and that could include the Israeli brand I buy but at least it isn't a Indian company. When I started taking it there were only two companies that made the generic. Teva and some Indian company. They might have Canadian distributors but they are not the company that manufactures/oversees the manufacture of them.
The node photo is from BC.org. There really is some good info on this site too not just the forums.
TwinMamaHeather I don't know much about Abraxane but I did read its a good chemo that is being used more often in early stage. Slightly elevated liver enzymes can happen even when you are not on chemo. Many times they return to normal. I'm sure your onc is watching this closely… or the test wouldn't have been done in the first place and you would have never known. What did your onc say?
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Twin, I'm a clinical pathologist, which means I specialize in clinical lab testing. Don't fret over slight elevations in liver enzymes. That is perfectly normal when they are dumping all this garbage into you. We see it all the time with people on hard-core medications because the liver does so much of the metabolizing of them. Real liver damage will show sky high enzymes, so just relax.
But I will say that the best thing to avoid during chemo, in my humble opinion, is acetominophen. It is so hard on the liver. Talk to your NP or MO about pain meds if you need them, but I would avoid any tylenol-type thing while going through chemo. I don't touch the stuff, ever. I've seen way too many people in autopsy with livers like lace from long-term use or suicide attempts. Ugly stuff, and I know the FDA is watching it closely.
Lago, you are looking great, as usual!!
So off-topic, and totally dorky, I was thinking last night how beautiful my skin was during chemo. It really was; I got a lot of compliments even though I had a hemoglobin of 6 and was pale and pasty. I'm 54 and the skin on my face looked like a baby's behind :-) I think there might be something to facial exfolliation, which I always kind of thought of as hog wash. I'm going to start doing some mild glycolic peeling. I also had the most fabulous cuticles of my life during that whole awful experience, no peeling or cracking. Interesting. Maybe I need a glycolic peel on my cuticles too...
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Surgery time has finally arrived for me. It will be.August 19 and I will be having a UMX and total lymph node removal on the right side. I cannot take Percoset, Percodan or other relatives of those drugs. Does anyone know what painkillers are just as effective? Tylenol works well for me, but after PBrain's warning, I am concerned. Also, in my post-surgery instructions, I was told to shower even with bandages on. Is that normal? Apparently there is no waiting time.
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honeybair - you could ask for oxycodone or vicoprophen, also I think that Fentanyl is acetaminophen free. I could shower within 24 hours after any of the surgeries I had. Hoping things go smoothly for you!
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OK surgery MONDAY? Tell me what a UMX is please honeybair--cuz I can't take any of those drugs either, but I'm not sure what u'r having done.
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camillegal - in case honeybair doesn't answer you shortly a UMX is a uni-lateral mastectomy (one breast) as opposed to a BMX which is bi-lateral mastectomy (two breasts). She did neoadjuvent chemo prior to her surgery.
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Camilegal, right breast, unilateral mastectomy.
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SpecialK, thanks for your response to my drug question. Like any normal human, we all have a tendency to worry about the unknown. When I first began this journey, it was fear of chemo. I found the fear to be worse than the actual experience. Now it is anxiety about the surgery and pain management. I have read many posts here in which some women have little or no pain post surgery. We are all so different in our reactions to everything medical.
I have enjoyed reading all the encouraging messages as well as the vast amount of information I have gained from this triple positive group. You women are awesome. I rarely post, mostly lurk.
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honeybair - just went through the pain med issue with my DD who had her tonsils out at the age of 24. Not fun! She has never had surgery before and has never needed to take pain meds but we quickly discovered that she cannot tolerate Codeine. It made her vomit - really not good after throat surgery! She ended up taking Zofran (shades of chemo for me!) and it seemed to calm her nausea although it didn't work for me at all - also she was taking these drugs on a relatively empty stomach as well since it was so hard for her to eat. As far as pain post-mastectomy, I had relatively little - I took pain meds for a few days and then switched to OTC stuff. I found that I got good relief from a very warm shower too, and used those microwaveable beanbags on my back (I have degeneration at L4/5) that was stiff from so much laying around, lol! I certainly hope you have no challenges and the anticipation is indeed the biggest hurdle - I know that was the case for me as well - none of my treatment or surgery was as bad as I thought it would be!
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Lago - Yes, Abraxane is wonderful. I really wish more women could take it instead of Taxol, it's the same drug, just "wrapped" in a different way. Abraxane is much better tolerated and there are virtually no allergic reactions to it {unlike Taxol}. Unfortunately, it is still under patent and is therefore super expensive, so the only people who get it are people who have had an allergic reaction to the other Taxanes, or people who have exhausted other options. I, however, am getting it because I am in a clinical trial - which is not testing Abraxane at all - but the effect of Herceptin on people who are weakly HER2+. I guess I am lucky that I am in this trial so that I have access to thsi drug. About the liver levels, my onc is "not concerned" and "sees this all the time", but that doesn't mean it doesn't bother me. I am wondering if it's due to the addition of a vitamin d supplement in the morning this week as well as taking a larger dose of l-lysine in the morning instead of breaking it up over the day as I had been. I changed both of those things this week. So I decided to cool it on all the supplements for a week and see if that has an effect on the levels.
PBrain - I keep going back and reading your post. Thank you for the reassurance. Honestly though, I wasn't really worried about liver failure, more that this could be a sign of the disease progressing into my liver or something. I know it's common for levels to increase, but it still freaks me the eff out! haha
I don't know why I am surprised that it happened though, I mean, it literally says on the paperwork I have from chemocare.com under the "most common side effects" that Abraxane "may increase tests measuring liver function - which will return to normal upon discontinuation". I have most of the other common side effects listed, so why am I flipping over this one? I guess because it's new and it's the liver.
honeybair - I will be sending you goo vibes for your surgery on Monday!
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Honeybair they gave me vicodin and oxycodone. I didn't use either of them nore did I need Tylenol. They took the pain pump away because I wasn't using it. I had 10 nodes on one side and 4 on the other with a BMX. I was very sore but not in pain. I hope you have the same experience that I had. BTW I was scared shitless about pain. Never did take any of those pills with the other surgeries either. Trust me they will not let you go home unless your pain is managed.
TwinMamaHeather These drugs are only for a short time. Most things tend to return to normal levels after getting off this stuff.
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I fell asleep, but thabks for the info cuz u all know me by now.
Honeybair like Lago said I was waiting for any kind of pain and nothing I didn't use the pump or even take anything for it, my sister too we were both expecting it to be painful-I've had other operations and they hurt but this one not at all--maybe cuz they remove everything so nothing is left to hurt??? I hope that's u'r experience too. In fact at first I thought they didn't do the operation.
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Miss PBrain....which abbreviation on my blood test results is for the liver....? I have so many highs and lows I dont know which is which....
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Honeybair, wishing you nothing but great success with your surgery on August 19.
Rozem, hello fellow Canuck
. Yep, I reside in Toronto, too, had my lumpectomy at WCH, but all my other treatment was at Princess Margaret Hospital. Thank god for that facility. Have you been pleased with the care you have received?0 -
ChickaD, how many more tx? Seems like you should be mostly done soon … I hope?
Congrats gratitude! I finished 7/26th. I got deported on Monday, SO happy about that! Now I have a big scar but hopefully soon I will be able to use that chunk of my wardrobe that has been on ice for a year!!
Twin, tamox doesn’t bother me too much. I am having more arthritis problems these days but that could be from a variety of treatment-related reasons, not necessarily tamox.
Nicky, that’s so great to hear that you are doing so well.
Soriya, ditto that your tumor should respond better to chemo. Also, if you don’t have a recurrence in the first 3 years, your likelihood of recurrence goes way, way down, whereas for us er/pr+ people, we have to keep worrying about it for much longer. I have never heard that about being brca negative meaning your tumor is more aggressive – almost everyone on this thread is brca negative, I think it’s unusual to be triple positive and brca+.
Babyruth, I am SO sorry you are having to go through this all again!!!! There are lots of new drugs out for us her2+ women and I really hope one of those is a great fit for you to kill that &^$&^*% cancer!!
Wow I am really regretting checking in today. Too much bad news! No babyruth! No honeybear! No Bethcon! Beth is your pain responding to motrin or anything like that?
Beth, re your insurance company, that blows. I’m sure you’ll win that battle but REALLY you have enough stress right now without them jerking you around. Isn’t the CT and PET scan both a lot of radiation? I wouldn’t want you to have both unless it was really needed.
Goutlaw- nonprocessed food is food in its pure state, more or less, like a carrot or flour or a chicken breast. I mean even those are processed a little. Processed food is basically like those premade dinners, or potato chips, or cookies, or even bread – it is processed from its basic ingredients into something else. To avoid processed foods, you have to cook. Then you are processing it but you can watch how much salt, fat, sugar, etc. you throw in.
What they mean by sentinel nodes is the number of nodes that light up when they inject the dye. It just means those are the nodes that are the most likely route for the cancer to spread, if it has spread. Lighting up doesn’t mean anything has spread, it just shows the most likely path that it WOULD spread. So if you have 2/14, it means that they removed 14 nodes but “only” 2 had cancer. For me, 4 nodes lit up and 0 had cancer. Goutlaw you are pretty young so your period is very likely to come back. That’s why you’ll be on tamox. You will probably go on “chemopause” for awhile but then your periods are likely to come back, unless you have an ooph.
TwinMama, pbrain knows her stuff, but just in case you like to see it repeated, all this crap they are giving you is tough on your liver. Most of those tests while you are doing chemo is to monitor it to make sure your liver can handle it, because they don’t want to kill you by trying to save you. It’s typical for these to become elevated and they should calm down when you’re done. I doubt the supplements have anything to do with it, but I would say drink lots of water. I didn’t drink alcohol while I was on chemo b/c I figured my liver and kidneys had enough to deal with.
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Honeybair - I'm allergic to that med group too - Lortab, Percoset, Dilaudid. I was able to get morphine and fentanyl in the hospital and post op they prescribed Demerol. I found it difficult to get the Demerol filled afterwards, so if you need a pain med for at home, ask for a script ahead of time and find a place that can fill it or order it in time.
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Honeybair,
Wishing you all the best on Monday.
I will be thinking of you.0 -
I think we can all heartily agree to this one! Thank you breastcancer.org and all my friends in this forum.....don't know how I'd done it without a lot of help from my friends!
http://newsroom.ucla.edu/portal/ucla/personal-website-chronicling-improves-247834.aspx
"Chronicling cancer experience online can reduce depressive symptoms in breast cancer patients"http://newsroom.ucla.edu/portal/ucla/personal-website-chronicling-improves-247834.aspx0 -
"Chronicling cancer experience online can reduce depressive symptoms in breast cancer patients"
Ha ha, tell me about it… or should I say tell us about it!
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Ha ha Lago!
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gratitude -treated at sunnybrooke and surgeries at PMH/TG - yes was pleased with my care, all top notch facilities
lago great pic!
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Hi everyone. Hope everyone is doing as well. Welcome to the new members. Sorry you're here. And I wish you the best. This is a great forum.
I'm back to work full time and haven't been around lately. I just finished radiation this week and now have side effects of sore breast and being very tired. The ro told me that its not uncommon to feel se at the very end. I have my echo on Monday and will see my mo and cardiologist next Monday to see of I can resume the Herceptin. Never had side effects before. Oh well. Happy weekend to all0 -
Ashla,
Couldn't agree more!!
Nicky0
