January 2017 Surgery Group
Comments
-
I'll be a few months behind you, Aboob. I don't start Tamoxifen until after my last chemo dose in May
0 -
Hi Shellybeans, I had a unilateral mastectomy with immediate reconstruction on January 23. After my drain came out (two weeks post-op) I had 3 cords under my arm originating from the scar of my sentinel node biopsy. I was scheduled for PT, but not for a few weeks out. I called and explained the problem and asked if they could put me on a waitlist for an earlier appointment. Fortunately, they were able to get me in the next week. The PT, who is certified in lymphedema treatment, told me it was axillary web syndrome and she showed me some great stretches and encouraged me to massage the site with my fingers. It has worked really well! Two of the cords are still there, but they are no longer painful or inhibiting my movement. I would call and see if there is any way they can get you into PT sooner. It made all the difference for me. Best of luck!!
0 -
Hey ABoob - we might be starting within days of each other.
0 -
aboob - check out the Bottle o'tamoxifen thread. It talks about the different brands of tamoxifen and which brands have less side effects
0 -
yay pyrrh! Let's do this!!
Dcis, I'm trying to steer a bit clear of the threads bc I think more of the SE people post so you get a skewed view. I want to go in positive with a 'yay, let's starve those estrogen dependent cells!' If I get SE I doubt I will go hopping from brand to brand. I'll just stop. We shall see - I'm just gonna roll with it.
0 -
Mayne is the brand people seem to have the best luck with, annoyingboob.
0 -
Azjs - thanks for the information! I actually met with my yogi yesterday and she really helped. She's worked with a lot of BC survivors and I was amazed at how much better I felt when I let. I was able to do a modified downward dog and a full one - just for a minute - but I did it. I had almost instant relief to some right-sided back pain I've had as well. I was able to get almost full ROM on the right - I nearly cried I was so happy.
She is the most wonderful and inspiring person. She kept telling me that during chemo to always remember that the drugs will mess with my mind and make me question myself and by body but it's not me - it's the drugs. I have to take care of my body so it can take care of me. Anyway, it was really a great session. I'm going to meet with her every other week during chemo since I'm afraid that going to the classes may introduce too much opportunity for infection. It's not "hot" yoga but it is in FL so it does get pretty hot in there - so one-on-one is probably best.
Still seeing the PT on March 7 - I don't think I can go sooner since I start chemo next week and don't want to go during the worst part of SE's.
Thanks again for the information!
0 -
Hi all -- Aboob, was planning to start tamoxifen next week to,try to get,through some of the residual pain from the drain sites,before,starting' however, no rush... lets start together!
Btw, I do have daily pain from my TEs ... they are over pecs, but I'm pretty much in constant low-level pain ... it's like a bad sunburn most days, but under the skin and TEs... in addition to the drain sights. Ps said it was normal. I keep hoping it gets easier, but the fills exacerbate it... I am experimenting with how to manage pain for a full night sleep... this week what seems to be working is Advil pm... and then pot ( my disensary has drops,that last longer, so put them in herbal tea and hour before bed). But the Advil,PM alone is also v helpful. I can't wait to be rid of them, but that seems like a long time from now... going down to fills ev3ry two weeks instead of 1 sounds like,a,good,plan
0 -
shellybeans, so great about The Yoga! So,glad you are working with someone who is focused on mind and body... so important. Love her distinction between what is you and what is caused by the drugs... not internalizing that shit is so important and that is not an easy thing to remember (or even identify) given everything we are facing... thank you for sharing that!
0 -
Annoyingboob-- I will take tamoxifen with you. But it's not until after I finish chemo I think. Probably late April. Haha, we make it sound like some fun recreational drug! I haven't researched too much about it yet. In the beginning I was totally against it. But...... that's the way I used to feel about chemo too and now look at me.😒I do like your attitude, at least try it. I do believe it has great potential to reduce recurrence. My friend who's been on it for 8 yrs has had very little if any SE to report. In fact, she is nervous to go off in 2 yrs because it has made her feel safe.
RoseRN1--thankfully, no I have not had a fever since returning home from hospital. Would the steroids effect me with nightbsweats this far in? I only take steroids the day before, day of and day after chemo. Is that the same for everyone?
Elem--Fightingirl was talking about smoking some pot. That's why I said enjoy your doobies. They do call them that dont they? Lol!
Docmama -- nice to hear from you!
I do like reading the TE talk. I'm not there yet but I like knowing what to expect. I have learned so much on this board!!
Praying for Leftcoastie
0 -
dcbc: are your TEs filled with air or saline?
0 -
3Bears, I'll be your Tamoxifen buddy. I'll be starting mid to late April.
0 -
started the tamoxifen discussion over coffee with the hubby this morning...he is now chewing on it while putting our new patio furniture together!! He surprised me last night when I got home from work and asked if I wanted to go to lowes and buy it! We have a west facing backyard in AZ which is very hard on furniture so we have not been able to use our yard during the most beautiful weather of the year...the stuff we had out there was just awful from the sun. We've got a guy coming today to quote us on a pergola to give us a little more shade back there before summer starts. Anyways, all I want is to move on but I know I need to really give the tamoxifen some serious thought again.
pugsmama and annoyingboob, that is what everyone keeps saying...at least try it. I have inherited high blood pressure and have been on and off blood pressure medicine since I was 28! Before my diagnosis I was trying to control it with natural substances and diet but once I was diagnosed it skyrocketed to 154/108. I had to go back on the medicine or they would not have allowed me to go through surgery. That and I probably would have stroked out that day they sent me to check for blood clots! I thought I was going to even on the medicine!
So this is my dilemma...partly. Something deep inside says not to go on them. Is that something denial? Is that something that it will be a reminder every day for at least 5 years? I just don't know. I'm not generally a negative thinker at all but I have fallen into that "small percentage" of people time and again with this whole breast cancer thing. Obviously, there has been some good news and I dodged some bullets like chemo but it's a small percentage of people who develop cording especially when I only had 2 lymph nodes removed...it's a small percentage of people who get an infection from the catheter procedure...i along with many of you are considered "young" for breast cancer! Like many of you, I am pretty young, active, and live a pretty healthy lifestyle...I struggle with the idea of conventional medicine...the whole doctor and pharmaceutical thing. Then there is the other side that says if I don't do the tamoxifen and I going to be in that percentage of people with recurrence? Gosh guys...I know some of you are getting chemo and this probably seems crazy...I'm just kind of writing out all my thoughts and feelings and I don't know why the huge struggle for me. Anyways, I am not against drugs...Lord knows I relied on lorazepam and pain meds during the last few months. I know we all have to make the best decision for ourselves along with our doctors and I'm not knocking using tamoxifen at all...I'm just not sure if it's right for me. Damn, I need that crystal ball!! I am sure not expecting you all to give me the answers...
BUT, all who've made the decision to go on it, was it an easy decision? Can you share what research told you or your doctors that helped you to know this was the best route? Anything would be appreciated!! This has honestly been the most torturous de ision of all the ones I've had to make...
Love you all with all my heart and sorry for being so crazy over this
0 -
Fightingirl, my thoughts on the Tamoxifin is that if it doesn't work for me, I can stop any time. I too am on blood pressure medicine as is the rest of my family over 40. That I cannot stop taking. I'm going to give the Tamoxifen 3 months. If I am not having a good quality of life, I will stop or try something else. I'll experiment for less then a year and if nothing works, then it isn't meant to be. Now major side effects will mean immediate stoppage
0 -
Fightingirl, it is such a personal decision. You really have to ask yourself if the risks are worth the benefits. I am suppose to start on Arimidex, not tamoxifen after radiation. I think it's because of my age and am already postmenopausal. I know, like chemo, I did not want to look back and say what if. As said by someone else, you can always stop if you can't tolerate the side effects. At least then you know you gave it a try
0 -
PugsMama... saline. I envy you your love affair w the TEs... also hoping I get there!
Fightingirl-interestingly, I did not even question the tamoxifen... well, not entirely true... I had hoped to go straight to the AIs, but given my age (not clearly through menopause yet) that wasn't an option. I wonder if speaking with a heart doc would be helpful as you deliberate... just spitballing. My mother also told me to always trust my gut. But I think the slow burn of analysis that you and hubby are both doing is good... sounds so healthy both from a decision making process (I.e., you'll make it to the right place) and in terms of comfort in knowing you really were thoughtful in making it. I struggled with UMX / BMX decision... kept testing my decision to go bmx... but I always came to the same place. The last thing my bs said to me as we wheeled into the OR was that she had been revisiting it all week as well and thought we were I now the right place.... anyway, it's a comfort now to me that I made the right choice.... that both she and I were independently questioning it, and came up in the same place.
My MO also said if SEs are bad, we can switch to other medication... I also like the idea that this is not a via art choice... either do it or don't... the try it and see method feels like ther is a fail-safe.
anyway, good luck with the process... sounds like you are doing everything!
xO
0 -
Good Morning All! I am very interested in the Tamoxifen discussion, as my sister will soon need to decide what type of hormone therapy she will go on. She is 56 (DCIS stage 0) and is not really sure of her post menopausal status due to a uterine ablation she had about 5 years ago - no periods since then. She saw her MO yesterday for the first time and is still confused about her options. They will do blood word to determine her menopause status so that the AI's can be considered as well. The usual protocol is to finish radiation and then start the hormone therapy, right? I just want to be able to advise her gently without overwhelming her with information.
Yesterday I realized something interesting. I had to give my Driver's License to the check-in desk at the hospital where I met my PS. The gentleman behind the desk looked at my picture and said it didn't look like me anymore. I'm traveling in April and wondering if I should get a new DL picture taken to avoid any issues with TSA (besides getting a letter from my PS because my TE's and port are likely to set off the metal detector). What do ya'll think?
0 -
argh. I'm sorry the TEs are so uncomfortable. Are you still taking pain pills? I'm reading a book about neuroplasticity and how the brain forms neural networks and the author seems to think it's important when in pain to take the meds to 'trick' your brain. I just started the chapter though, so I'm no expert, lol. I hope relief is on its way with MM!!!
Fightingirl, please don't feel bullied by us about taking tamoxifen. It is such a personal choice, and as we have seen along every step of this journey, we are all different. Like you, I was against everything from the beginning - in fact, my original plan was to do bmx just to avoid xrt and pills. Well, my short course xrt turned out to be not horrific. I can share with you my convo with MO. I was really worried about stroke and dvt. The paper of 1800 women had a 1% incidence of stroke across all ages. In his anecdotal experience, that was usually with older women who would have stroked anyway - smokers, obese, poor lifestyle. I get your concern with your blood pressure, so you are certainly a bit at risk there, but perhaps it's balanced by your young age, who knows?
Then I was worried about endometrial cancer. MO said premenopausals slough their uterine lining each month, so it's unusual for endometrial cancer to take hold in that setting.again he said it was the older women who got that. Kinda confused by his answer bc postmenos would be on AIs, but that paper was from 1999 so maybe he meant 'back then'. And I have fibroids, which I have read on this board might grow, but he sorta shrugged that off too. I know it's his job to do a 'hard sell' but it's also had proven benefit for both breasts, so that's my decision on trying to take it. I say 'trying'. I can't promise I'll stick with it, but I'll try.
I'd love to hear from whomever it was that had a meeting just to discuss SE. But at the end of the day, it's so personal.
I'm glad some of you will be joining me in my tamoxifen cabana. Doors open a week from today!!
Xxoo
0 -
I do not feel bullied in the least bit!! I have been mildly questioning and then my PT and RO also weren't keen with my decision to decline so I'm now back to really thinking and knowing I need to decide soon. I appreciate all the feedback...love you ladies and would never think anything is bullying or coming from a bad place. I want you to be free to giveback open and honest opinions! ❤️❤️
0 -
Docmama- Yes, I believe you usually start Tamoxifen after or during radiation. My MO was originally going to have me start during, but adjusted his recommendation to after, which I greatly appreciate as I want to be able to track any SE's. I am staying away from the info on SE's and even stopped my MO from telling me. I want a true test and not what my crazy mind induces. If she is post-menopausal, your sister will definitely be on AI's instead. I wouldn't bother with the new pic...
Aboob- I'll be on the Tamoxifen train with you, but not until after rads..... Which still hasn't even started!!!!!!!!!!!!!! ARGH!!!!!! I'm so incredibly frustrated that I finally chewed out one of the members of my RO staff! Not my best moment, but I feel completely justified, so I am okay with my actions. Thanks for the great pics, I needed the smiles this past week.
3bears -I don't believe that its the steroids that are causing the night sweats. I found that since chemo (and maybe because I am still getting Herceptin) I have a tough time regulating my temperature. Its not necessarily a "hot flash" type thing though. One minute I'll be warm, the next I'm pulling down my sleeves to keep my arms warm, socks on, socks off. There were quite a few of my chemo sisters that had the same thing. One of those things you never know about until you start comparing notes. Also, I had my period all through and after chemo, but I'm not sure that's the norm.
Have a great weekend Ladies! I've been reading even though I haven't been posting much. Trying to stay on the medical team to get my treatment moving forward and it's been a full-time job lately. I just want my plan so that I can press the "play"button on my life again! So glad that so many of you ladies are nearing the finish line!
0 -
The tamoxifen thing is kind of overwhelming. I know my MO didn't recommend it for me, but I am still struggling whether I want to do it or not. My husband has said repeatedly that there is a difference between chances of recurrence and overall survival. At least for DCIS, the tamoxifen reduces the risk of recurrence but doesn't change overall survival (which is already really good). It doesn't make total sense to me, and I still need to have a significant pow wow with the hubs about it. Like everyone else said, it's such a personal decision, depending on your risk factors and personal history.
docmama - I know I asked the tumor board if the results were the same if I did tamoxifen or ovary removal. If I was closer to menopause I would definitely go that route because the percentage recurrence rates are the same for tamoxifen and ovary removal. The ovary removal seems more "natural" to me. But, it has it's own set of risks if you have it done too much before natural menopause.
Where is that crystal ball when we need it? I would hate to have regrets that I didn't do all I could to prevent any new occurrences. But, on the flip side, you don't want to use a blowtorch to kill an ant. And quality of life is important, too. Ugh.
0 -
sorry, one last thing I forgot to mention. I'm taking escitalopram which is an ssri, but shouldn't inhibit the tamoxifen, so I can keep taking it (although I'm hoping to wean myself off in a few months) other ssri interact with liver metabolism and are more contraindicated so check with MO. There was someone who posted a Hopkins link that had a list of 'good'ones and 'bad' ones, but of course I can't find that now. But BENADRYL was on the list as interfering, so beware with your Tylenol pm or ask MO for a Benadryl alternative.
0 -
I just finished my first bottle of Tamoxifen. I was very worried to start because I have had SEs in the past with medicines that prevented me from taking them.
My thought was/is i can stop if i can't handle to SEs.
So far mild hot flashes and night sweets. Maybe a few more aches and pains in my hips.
I have endometriosis and want to discuss with my MO are there baseline tests that should be done, anything I should be more aware of, but so far no significant changes that i feel.
I have read hair loss may be a side effect, which I had issues with when I was in my late 20's, so I hope not to experience it again. I started taking Biotin
0 -
Annoyingboob - I heard that, too. Many people I have heard of take Effexor along with the Tamoxifen if they had been on an SSRI before. Effexor supposedly helps with some of the side effects as well.
0 -
Aboob, I'm off the narcotics... trying to manage with Tylenol. Advil, advil pm and pot... nothing is perfect, but trying to stay below a three on the pain scale... off meds altogether that is where I seem to stay, and that exhausts me, so switching between the alternatives as needed is my plan... don't always stay ahead of it, but a three is not the end of the world, and higher pain only happens after I do,too much.
0 -
DCISinAZ, though it doesn't help us make a decision I like the blow torch to kill an ant vs knowing we did all we could! I'm driving myself insane today (and my husband!) he feels so leary steering me on this and I get that but for sure a crystal ball isn't appearing so gotta figure it out!
The one thing that sticks in my head is the RO told me "you were a millimeter away from being stage 2". Frick!
So here's another concern and perhaps I should take it to another board where people have been on it for a long time...sex...vaginal dryness...i am 43 and my husband is 51...we are still quite enjoying a very active sex life. (Well we were before all this crap and I'd hoped to be getting back to it soon) Now, I'm not saying to risk my health just for that by any means but it is a concern. These are the things I can't throw out there with just anyone because they will think I don't want to take it over sex!! I have taken antibiotics, pain meds, aspirin etc in my life but this is the first medicine that I've had to sign a piece of paper with all these horrible side effects and given 5 additional pages of info on. That freaks me out. But getting a recurrence would freak me out too.
Farmdream and everyone, I so appreciate you're thoughts. I'm slowly working through it and keep them coming
0 -
docmama, couldn't hurt to get a letter of explanation! This way you have it if need be and I'm sure they are used to typing up those kinds of letters. I had to get one from my BS to put my gym membership on hold
0 -
I hear ya fightingirl. Although I've been lonelygirl since my diagnosis, I do have a new bf who lives in Europe, and I'm hoping to get back there and enjoy a healthy sex life to make up for lost time (assuming he's not totally freaked out by my breast scars)!! There is a thread somewhere on here just for sex life issues and tamoxifen you should check out. There are options and those girls are creative!!!
Anyway, like I mentioned, I'll give it a go. I do like the fact that's it's bone protective as my family is osteoporotic. So I'm trying to focus on benefits rather than SE. Aaaannndd, I even shaved my legs the other day, lol. I hadn't done that since diagnosis, and it felt very symbolic - shaving off the hair that stayed with me during this ordeal. Good bye hair, good bye breast cancer!! I'm gearing up to move on...
0 -
I love the way you look at things annoyingboob! I feel like that was how I saw life before BC and I may have gotten a little jaded along the way... love you
0 -
I have been reading and not posting to much. My head just gets so clouded with all this BC crap. When I met with the ONC there was more info to process. I am still waiting on tbe oncotype to come back. I met my RO on the 14th of March so I have some "down time"......really!?!? I had been doing great about not thinking about BC but now the shit fairy is visiting more often than she is welcome.
All of you are amazing! Each one of you bring so much to this thread. Its real life going on here.
I will be probably be on the Tamoxifen train with you girls. Fightingirl, so glad you brought up the SE. I am 51and DH is 49 we are still very active. So I have concerns there as well. I have wanted to ask about sex and all this so maybe I should creep to another thread to.
The lasagna is ready to take out of the oven. Got to run!
Much love!
0
