NOLA in September?
Comments
-
Somebody on previous page asked about the Marena garment and stage 2. I would use it ASAP personally b/c it is just so much more comfortable. BUT if you are too sore from lipo, it might be hard to wiggle into the non zippered kind, which is even more comfortable.
Amy has no drains, and I'm getting mine over to her ASAP. To me, there is no comparison between the DOM they suppy and the Marena. There were ladies who came to this thread and educated me, and I am so thankful. When I had my 2b, (no drains, but lipo) I used my Marena and it was the bomb!!
You can get them really cheap on eBay (Marena group I think) but they often have strange sizes. I ordered a full price one after I got a cheapo sort of odd one from eBay for $19.95. Full price is expensive, but for me, worth it.0 -
no words.....the docs didnt know what to do with me so they recommended me going on tamoxifen. They didnt know whether it would help or not but told me to give it a try because of my BRCA status. It didnt work for me.
0 -
tigsun... I figured it was a newer test.. my first cancer was 2006, second was 2008 so that may explain why I never was offered the test. Timing is everything, eh? Oh well ... you make decisions and do the best you can with what you're offered at the time ...
0 -
I'm grateful for the tangent! Such a wealth of info, though it's making my head spin. I don't need my ovaries removed, so thankfully I don't need to contemplate that. I am going to start on tamoxifen next week. I don't really want to, but I see the improvement of numbers. Chemo has thrown me into menopause, at 40! My skin has gotten super soft, and not the soft I want. That tissue soft skin. I'm a little worried about my heart, in that my blood pressure became elevated shortly before I was diagnosed w/BC, as well as my cholesterol became elevated around the same time. I haven't addressed that yet, and no one diagnosed me as 'high.' Chemo has brought down my blood pressure. I hadn't read that tamoxifen itself could elevate these things. So I've got some reading to do. I was hoping my MO would let me wait until after my Dec surgery to start Tamoxifen, but no, she wants me on it right away. In six months time we'll see if I'm in menopause or if chemo just shocked my ovaries.
And, also, my MO told me my last visit that my CA 27.29 numbers increased during chemo. I didn't know anything about this tumor marker until my last visit, so I didn't know what questions to ask. I don't even know what my numbers are, or if I want to know, since they are unreliable (so why check them?!?). I can't do anything about it right now anyway. I think that will be retested in early Dec. I did read that inflamation can cause an increase in numbers, so I'm banking on that for now.
I'm feeling SO antsy about my fatigue from chemo. It's only been a week since my final infusion, but I REALLY want to feel better NOW. Sometimes I feel panicy about, then I get back to deep breathing and centering my thoughts. I'm also so sick of being hairless!!
How about this gut kicker: I've been telling my 10 yo daughter (she's on autism spectrum) how we are alike regarding various things. This morning she told me she doesn't want to be like me because she doesn't want what happened to me to happen to her!! It was obvious she was talking about BC, and she was crying. Most of the time she doesn't reveal feelings about what I'm going through, so that was a stunner. I'm not sure where to go with it; I'm more worried about my daughter than some unreliable tumor marker, that's for sure.
Back to being on topic: I'll be getting a Marena for sure after my Stage 2.
0 -
Paula... I am not familiar with that tumor marker, and the CA 125 I was talking about (as unreliable) is for Ovarian cancer... your test CA 27.29 may be reliable... Or had you heard otherwise?? Have you asked to start tamoxifen in December, especially regarding the clotting issues and future surgery? And my blood pressure is normally high, always has been... chemo lowered it and surgery did as well... so I have been off meds or awhile now... Does tamoxifen raise blood pressure? I sure don't need that... more questions for my MO.
0 -
Hi all. Just checking in. After some kind of miserable days, I had some great stuff happen today. First and foremost, I got a clean path report. It was icing on the cake that I heard the good news from Dr Stolier, who is just such a wonderful human being. I also went on to the Center today to see if I could get the breast drains out. That visit got converted into my post-op, and Dr D pulled both breast drains and the Doppler wires. It felt so much better when they came out! And I am generally feeling much better, although still lots of soreness but so much better minus those drains.
I had a great visit with with Bernice yesterday. I heard from Dr D this afternoon that it went well for her today and she was back in her room.0 -
Awesome news Running! A clean path report...that makes all the pain-in-the-butt surgery issues totally worth it!
Bernice hope you are doing okay and resting comfortably. So glad you found us!
Happy for the OVCA/ooph tangent as well - I learned a lot. Having no cancer and being BRCA1+ changes things for me, so many considerations! I consider myself very lucky to have not had cancer and to have had my PBM before my hyst so now I'm cleared to take all sorts of bio-identical hormones. I saw my hormones specialist yesterday and she is tweaking my prog. and test. levels to get less fatigue/more sex drive. However I've had no hot flashes, skin or hair issues and the test show good estrogen levels so I'm sticking with the vivelle dot for now. Happy to be able to use hormones, but even in speaking with my doc she said their are options for people with ER+ cancer, so it's worth it to find a doc who specialized in hormones/menopause and to see them BEFORE getting an ooph if you can.
So Marena ladies, I'm sold on getting one of these but looking on their site my head is swimming from all the options. I'm 5 weeks post stage 2 but wanting to compress a bit longer. But man, the side zippers from the DOM are digging into my dog ear scars and making them itchy like crazy...something without a zipper/seam there would be much better...Which garment do you recommend? links or product #'s greatly appreciated...
0 -
Denouement: this is the one I wear http://marenagroup.com/garmentstore/product/tabid/199/p-98-2nd-stage-girdle-with-short-legs.aspx0
-
Betsy, the CA 27.29 is for breast cancer and from what I gather from reading, it's 50/50 reliable. I guess it can be helpful to watch for changes or for dramatic numbers. Having had a BMX and strong chemo, the number doesn't usually go upward so my MO wants to be sure that number increase was flukey. I still need to read more about it.
Running, so glad to hear the clean path report. I just love Dr Stolier---he cracks me up!
Dana, good to know the info re: hormone options for ER+ cancer.
0 -
Had surgery this morning. I think it went well. NO PAIN at all. I am up and sitting in a chair. Yeah! So far - very GOOD.
Bernice
0 -
WOOHOO Bernice! So happy you are doing well - no pain, that is amazing!
0 -
Cheers to no pain! You are giving us all hope!
Well the compression talk has me worried about comfort but at least I know to get myself measured as soon as drains are out and get one overnight shipped!0 -
Running for sanity- so glad to hear of your great recovery
Besa- wow, so glad to hear you don't have any pain and already sitting in a chair
I didn't know there was a test for tamoxifen. My ONC did not mention anything. I've bee on it for 4 years with one more yeacan't go. After chemotherapy I had a period one year after and then no period again for year and then one period the following year. My body can't make up it's mind. I'll be 48 next month.
I can't remember who said what things we should look out for while on tamoxifen. I'll be switched over to arimidex for 5 more years. Not looking forward to so many unknown risks0 -
Yay, Running! Congratulations. What a relief.
0 -
Yay, running! Congratulations. What a relief.
0 -
Thanks for all the good wishes. Bernice, I am so thrilled that you are doing so well. I was completely out if it at that point. You are impressive! I was planning to visit you tomorrow after my post-op, but that happened today so I don't think I will see you. I was so glad to have a chance to talk to you before the surgery. I hope your recovery is the easy and wonderful one that you deserve.
Surfa, I would love to come say hi. Are you around tomorrow morning?0 -
Hi Sonya and Bernice... Hip flap surgery is so much easier than DIEP... but don't wear yourselves out... I remember having no pain and doing many laps around the hospital, but then upon discharge my husband and I walked all over the Quarter and twice walked back to the hotel afterward (Homewood)... THAT was too much... take a cab when you get tired... walking is great, but within reason.. So glad you all are feeling good... sending healing vibes to both.
0 -
Hi Betsy. You are absolutely right. I got too happy on the day we left the hospital and then was super sore and very tired the next day. Today is our last full day here so we are doing some sightseeing (garden district and nice lunch) but will be moving slowly and taking cabs. I just want to thank my wonderful friend who came out from LA to take care of me when my husband went back to be with our kids. She hasn't gotten to see much of NOLA so today we hope to change that a bit.
I have to say hip flap recovery has been hard enough for me - I salute all the DIEPers out there.0 -
Hi Sonya,
Sorry we didn't get a chance to meet again but I just want to thank you for talking to me the night before my surgery. It made things much easier. It was very calming.
0 -
Hi Sufagrl,
I am not sure exactly what test you are talking about but this iswhat little I know abut it. For a while some docs were testing for the enzyme CYP2D6. There are different genetic variants of CYP2D6. Tamoxifen is a "pro hormone." It is metabolized to a the more potent form called endoxifen using the CP2D6 enzyme. The different genetic varients of CYP2D6 were thought to control how well tamoxifen is metabolized and would affect recurrence etc. I think theat the latest studies have shown that the different genetic variants do not correlate to a "good" or "bad" outcome.in women taking tamoxifen. Just my understanding -possibly someone elce can chime in.
0 -
I posted this a bit earlier...but my Oncologist at the Mayo did tell me that the findings on the validity of poor, intermediate or ultra metabolizer of Tamox for that test have since the original studies that prompted the urging of the tests are now less evident with more studies. There was also a lot of info on not taking certain meds and antidepressants with Tamox as it lowered the effects of Tamox...but newer studies now say maybe not so much....It is ever evolving and at any given point in time, with enough research, you can find a study to support or dispute much of tests and treatments...need to do your homework, trust a medical team or alternative advisor if that is your thing and make the best choice with the info you have...
0 -
Question for unilateral reconstruction ladies. I had a mastoplexy on one side and a hip flap on the mastectomy side. The "good" side seems VERY tender and much smaller than the mastectomy/reconstruction side -- like twice as small!! Smaller than I was certainly! Swelling in reconstruction side virtually nil. Um, did you find that the doctors were able to "even" things out and you were not left with smaller breasts than you wanted? Stage 2 in mid-December, so want to know what to expect and what to ask for. Thanks!
0 -
Hi Celtic, I had bi-lateral, but they are absolutely able to add volume in Stage 2. They will even you up!
0 -
celtic: it's too early to know what the final size will be. you're probably feeling more tender on the mastopexy side because you have more feeling there. it'll take time for nerves to grow back on the mastectomy side. I've had lifts done on my flaps and there was definitely less swelling from those than from the original reconstruction. I went from DDD+ right after my first stage 1 to an eventual DD, so you'll shrink as you heal. They'll be closer in size by your stage 2. The docs are pretty good judges of volume symmetry at the time of surgery.
0 -
Hi besa and no words thank you for the information about tamoxifen. I haven't had cancer on the other side for the past four years so hopefully I'm a good candidate.
Besa you're probably checking into homewood suites soon after being released from the hospital? I'll be flying out early tomorrow so maybe we'll meet up at stage 2. Tinking of going back in January because I want to enjoy the holidays
Sonya sorry we didn't have a chance to meet up. It's wonderful that you are able to spend time with your dear friend fromLA. When I returned to the hotel today I saw the driver waiting outside and I thought I'd stay downstairs and introduce myself but I guess you did not need the driver.0 -
This is also the Marena garment I got (same as posted above by Jesk) and I got it in black and I LOVED it. I gave it to Amy to use!! I hope it fits and she likes it. I sure wish I would have known about it sooner. If you can afford it, THEY ARE THE BOMB!!
http://marenagroup.com/garmentstore/product/tabid/199/p-98-2nd-stage-girdle-with-short-legs.aspx
0 -
Hi Springtime, I think this post got lost in the shuffle. Can you please add me to the calendar - I'm scheduled for surgery on Oct 27th (just in time to get home for Halloween!) Dr S, SCSH. They are doing scar removal on my stomach. Don't know if you'd call this 2B (not really working on my breasts as far as I know), or 1C (but no doing tats), or 1D?
Thinking of bringing my kids since they are soooo curious about the whole New Orleans experience. We'll see. Probably heading home on the 30th.
0 -
We will miss each other again. I arrive in nola on oct 30th
0 -
Many drugs are metabolized in the liver and use enzymes called cytochrome P450. One subset of P450 is CYP2D6, and this one metabolizes Tamoxifen. Of all the subsets this one has the most genetic variability -- often associated with ethnic groups. People can be classified into 4 groups ranging from poor metabolizers to ultrarapid metabolizers. Black individuals have the highest incidence of poor metabolizing ( then white, then Asian) and Middle Easterners and people from North Africa represent the most ultra rapid metabolizers. When you take two drugs that use the same enzyme system, they compete. Sometimes a drug inhibits the system and sometimes it causes more enzyme to be produced. When an enzyme is inhibited, the drug can not be well metabolized.. It accumulates leading to increased side effects or toxicities, but decreased absorption and therefore decreased effect. While the correlation between different kinds of metabolizers and breast ca recurrence is not well established, it is absolutely true that there are drug-drug interactions . These are two separate issues. Many drugs, including most antidepressants ( those that use the CYP2D6 enzyme system), cause decreased metabolism, and therefore decreased effectiveness of T. There are a few that do not. Some foods, such as grapefruit, do this too. Certain cold medicines and pain medicines decrease T. when taken together. This isn't much of a problem since they are used short term. Drugs like Valium and Klonopin are increased by T. Hope this helps clarify. ( But maybe made things even more confusing ...)
0 -
Springtime and Everyone Else - Thanks for all the info on the garments! So much to learn and you are all very helpful. I have not posted in a while (actually since surgery) but I really want to take the opportunity to thank all of you for all of your words, advice, support, etc. I am so glad I listened and decided to go to NOLA. I went in to remove the implant expander-implants that I had since 2001 since the ten year anniversary will be in November. It was a good thing I did because they were calcifying inside of my chest and my breasts were never anything to brag about either. My new breasts look better the day after surgery than my old ones ever did. I am completely convinced that everyone at SCSH loves what they do for their patients and it shows by the work they do and the care they take in doing their magic. Four weeks out, I am still putting out too much "juice" as I saw someone refer to it so I still have my hip drains. Although uncomfortable, I will gladly wear till the appropriate numbers or the 8 week limit is reached. I am scheduled for Stage 2 on December 2nd and look forward to once again being able to refer to the information, advice, etc. that I have read here. A special thanks to Marcia Petersen who introduced me to this great site and to Springtime for all the work you do on this forum.
Good luck and God Bless to all of you whether Stage 1 or Stage 2 surgeries. May you all have speedy and easy recoveries!
0
