March 2011 chemo-lounge
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Here is an update from me.....abnormal Pap smear , abnormal cells, so today, I had an endometrial biopsy that didn't produce a great sample. They think they will probably need to do a d and c. Since I take tamoxifen, and that is a side effect, I have no doubt I will now have to address endometrial cancer. Ugh
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fluffqueen- So sorry to read this. I always lament chasing the side effects...BC, the gift that keeps on giving.
I am sorry you are having to deal with this. Please keep us posted. Your chemo sisters are here for you.
Sending lots of positive thoughts and hugs, too.
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Update on my gyno issues. My GYN called today after I faxed him my list of questions. I was sitting in My ONC's office, fortuitously, so we put him on speaker and they had a big convo. Apparently my cells are not abnormal. I have endometrial cells in the pap smear, which IS abnormal for a woman my age. He suspected my estradiol levels would be high, although they haven't been the last couple of years when they do a hormone panel. At any rate, they are still waiting for the endometrial biopsy results, but he thinks he wants to do a d and c to double check everything. Thinks a hysterectomy might be overkill from what it looks like right now. There were no signs of squamous cells. They both think the whole thing might be related to tamoxifen and agreed that it should stop immediately. I am starting on Arimidex. They will test levels in 6 weeks also, but think that may do the trick.
I asked what would happen if I just said I wanted a hysterectomy and I was not going to take Arimidex. He convinced me to give it a shot first and then decide. Said I could always have the hysterectomy and if I can't tolerate them, he will work with me. Said he would put me back on a low dose of cymbalta if the joint pain is too much.
So, potentially better news than I anticipated at this point, but as my ONC noted, he doesn't give me odds anymore as I seem to end up on the wrong end of them.
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That is great news Fluff! What a relief. Please let us know the final pathology but it sounds like all should be ok and you have a good plan with good doctors working together on this.0 -
fluff, things sound promising for you. It sounds like holding off on the hysterectomy might not be a bad idea. I've been taking Arimidex since late summer of 2011. It does make my joints stiff, but I still get around and just learn to pace myself. Hope it all works out okay, just take it a step at a time.
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divine, do you have hair loss and weight gain?
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I do not have hair loss at all. In fact, this winter I even let my hair grow longer than I've had it in years. It's been cut since then and I'm getting it cut this week cuz it's driving me crazy. I prefer it between chin and shoulder length. Yes, I've gained weight, I'm about 20 lbs. heavier than I used to be before bc, but I try to take it in stride. Sure, I wish I could lose the weight, but I refuse to stress about it. Wishing you the best as you navigate the decisions you need to make.
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Thanks Divine!
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Fluff, here's a recent photo of myself with dh when we were going to a wedding. You can see my hair is very 'normal' and there are fashionable ways to hide a few extra pounds.
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You look great! I hope I stay looking that good. I had lost 30 pounds before all this started (granted some of it was due to the anxiety disorder I developed and couldn't eat). I have put 20 of that back on already. I wonder how much difference in the weight gain world Tamoxifen versus Arimidex makes. Some of it was that I fell off the healthy eating wagon and my own fault. I am trying to get back on that and now that my foot has healed, work out a lot more than I was. If I could drop ten of it I would be happy.
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This is me the day we completed the finishing of my son's basement. That is me on the left and his future MIL on the right. If we have a wedding in a year, I have got to get s
kinnier! She has MS and takes all kinds of pills too. But if I have to go up and light a candle, I better be looking good!
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fluffqueen, you're beautiful! I'm not sure if there would be any difference in taking the Arimidex instead of Tamoxifen regarding any weight gain. As for the wedding (and I love them), finding a dress that looks great and that you love will make you feel fabulous.
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Fluff you DO look great! I also have gained weight on tamoxifen....grrrr! I hate that but I love being alive and well so I will suck it up! You will look like a million bucks on the wedding day!!0 -
Fluffqueen-So sorry to hear you are going through this. It really seems like it never ends, doesn't it?
I can relate to the weight gain issues.
I have gained a LOT of weight on Tamoxifen. My onc blew it off and said he had only seen women gain 5 to at most 10 pounds. Whatever. Last week I went for my annual exam and found out I have a cyst the size of a golf ball on my left ovary. I guess that would explain the weird pains I have been having there. I have never had a cyst on my ovaries before so I had no idea....went to see my oncologist yesterday and I left there pretty mad. He of course minimized the problems I have had since I started Tamoxifen. Remember I had to have a hysterectomy since my uterus became enlarged and I was having bleeding issues like you would not believe right after starting Tamox.
I told him I thought the cyst was related too, and he said he didn't think so. I told him I thought weight gain, sleeplessness, irritability, etc were related too and he disagreed. Maybe I was just in a bad mood because I am so tired of this crap that just never ends. He gave me the speech again about how ovaries are important for bone health and heart health, and said I knew I was going to die of something and those two things were the least I was worried about. GRRRR. So, I have to go back in a month to see if the cyst has grown and then make a decision about what to do with it.
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Colodisney - I had a cyst on my ovary and it did not go away so my Gyno and MO agreed it was best to remove my ovaries. Had it done a year ago. That is when the weight gain got worse. Surgery was not bad. I also found out a year ago that I have severe osteopenia so I am on bone building meds (I call it my old lady pills). I have gained 5% bone density in the last year though. That is good news.0 -
Maria-
Thanks for letting me know I am not the only one!
How would you compare getting your ovaries out to everything else you've gone through? Easy, terrible, quick, painless? I have done mastectomy x2, chemo, radiation, reconstruction, and a hysterectomy so far.
Have a good week everyone!
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fluff and colodisneylover - it's hard for me to parcel out where my weight gain originates since I've been on tamox then arimidex, plus ovary suppression, but I have steadily gained since BC. I don't think one is worse than the other, in terms of weight gain. What I find is that it's about impossible to lose weight...that's where my frustration is. I even cried to my onc last week because I can hardly exercise due to joint pain and therefore can't lose weight. Hang in there. It's just one thing after another sometimes...ovarian cysts, bone decline, abnormal endometrial cells, joint pain...need I go on?
So, not much wisdom from me, just saying we are all in this boat together.
I will say, you look great, fluff. And Divine, I just love your outfit; very flattering!
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getting my ovaries out was not so bad. I had it done laproscopically so minimal scars. I don't think I took pain LEDs...maybe just Motrin. I was a little sore but nothing like everything else we have gone through.
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Fluff : I have been on Arimidex for almost 3 years ....no major problems with side effects...slight stiffness but doesn't keep me from being active. As far as weight gain...can't blame it on the Arimidex !!! I seem to lose weight when I eat right but can't seem to stick with the good diet. I must say I am enjoying my "new" hair since the chemo days..I think it's actually thicker and curlier now !
Colodisney: I also had my ovaries removed by laparoscopy...outpatient pretty much painless recovery
Glad to check in with you all...loving this gardening weather !
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thanks Stilts! I've decided to be optimistic. I am very active to start with and I'm going to assume there won't be dramatic changes. And if there are, I'm going to see if Cymbalta will help the emotional side and joint pain. Two birds with one stone. I'll be fat and happy!
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Hi Everyone,
I must say that I never check these boards anymore, for some reason I felt compelled to today and noticed that some members were posting an update so her is mine. So far so good on the cancer front. I do think about it far too often and I am scared way too much. Every twinge of pain I have I can't help but think oh no is it back?!!. I never get headaches but now every so often I have a zing of head pain, "for the love of God, not brain cancer"!!! I wish I could learn to trust my body again. A good friend of mine died just after her 50th birthday from breast cancer, she had the gene and most of the women is her family have past from BC. I think about her everyday as I approach my 50th birthday. I work in long term care and many women in their 80s and 90s have had BC, I try to remember that it is possible to live a long healthy life with BC.
My hair has grown back even thicker then it was before and I get a new Onc this summer, my last one really didnt do much so I am hoping this one is a little more proactive. On another note, I have seen lots of people die and dying from cancer is not so bad in the scheme of things.
I pray that all goes well with everyone I know when I needed support this is where I would turn.
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Fluff - I have put on some weight again and must lose it or be nagged to death by my Onc, but I have been on Arimidex from the start and really I know that I lose weight when I am good and put it back when I am bad - I think the Arimidex is a minor contributor only, but easy for me to blame! I had joint pains in the early days on it, but I am fine now - Maybe your body adjusts as long as you can keep active ,and I had a cortisone shot in my wrist which was the worst bit. . My hair has been a bit thin ever since chemo, but probably no worse than many women after menopause. I guess I am lucky when I hear Maxine hurts too much to exercise.
Sorry to hear about your issues ColoDisneylover - in my experience medics are never prepared to attribute any side effects to the drugs they give us, but you only have to Google it to see how many get the same things. I am really bossy now and just tell them what I want them to do.
I read some stuff on Arimidex and got quite depressed at one point thinking it would ruin my quality of life, but I have not even thought about it for ages. I am going to ask to stay on it for 10 years rather than five.
And on a positive note - I have just got back from South America where I climbed 200 stone steps up to the top of the ruins in Ollantaytambo near Machu Picchu (hubby got too out of breath in the altitude and had to wait at the bottom). I also spent 2 hrs in a hot tub behind the hotel - with a view of Machu Picchu and a phone where you can ring for service and they bring you Pisco Sours (I was good and only had one) - Damn life is good!!!!
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penny, that sounds like a dream vacation! I am approaching a month on arimidex. I didn't think my hot flashes could be worse and in the last few days, I have had some doozies. Some joint pain that actually feels a lot like when I sTarted tamoxifen. That even out after awhile. I do feel a little edgy about things, and seem to want to be pigheaded more than usual, lol. And yesterday, someone said something completely normal, and I felt like I was going to burst Into tears. What's up with that?
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Hang in there Fluff, what you are getting is severe menopause symptoms, the Arimidex will have kicked that off again, but it will settle down, I do still get hot flushes, but joint pain is minimal now (and is probably just me getting older) I honestly don't think it is affecting me now any more than if I was in normal menopause. I swear every time we change any treatment our bodies makes us suffer, but then they do get used to it.
I am way too pig headed normally to notice any increase. I guess the feeling like bursting into tears thing is the way it screws with our hormone balance and not much you can do, but I always feel better if I spend half an hour boxing in the morning - beating someone up first thing is a great stress reliever. I have bought a punch bag for the house now and I get up and punch it for 10 minutes if I feel grumpy.
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Penny-when I first read your post, I read boozing instead of boxing, lol. I thought that was a great idea! Boxing is good too. I try to walk a lot and I don't notice it so much when I am up and around. When I get up in the middle of the night, it is pretty funny. No really distance to walk out the kinks.
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It has been a long time since I checked in here, but I think of everyone often and wish everyone the best. It is unsettling not to have seen LilyLady for such a long time.
Glad to see updates from so many and to hear what is new with you. I am well. My daughter who was 13 when I was diagnosed is now 16 and completed 10th grade. I have a bad case of lymphedema that I was hoping would improve, but keeps getting worse. Still on tamoxifen and my hair is so much thinner than it used to be. Also still doing the vaccine study. Only one last vaccine to get in six months.
I feel like we are all sisters. You mean so much to me. Putting Hey Soul Sister on the jukebox and sending love and prayers for all. Kay
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Kay g-I am doing the vaccine trial also. My last time will be October! It's been interesting to read some of the updates that are starting to come out.
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Kay G-Sorry to hear about your lymphedema. Mine is terrible too. What kinds of things are you doing for it? I always like to hear what others are doing so I can discuss with my doctors. Thanks!
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Hi Kay, Fluff, ColoDisneylover, Maria, Maxine and Stilts - so good to hear from you - even if its because of the damn lymphedema etc. I have been lucky with my arm - it swells up every couple of months and I wear the sleeve again, but then I take it off and usually get away with another few weeks of close to normality. I sometimes think back to 3 years ago - we were all just finishing chemo - and how hard it would have been to manage without each other.
I have some American friends visiting in a few weeks and we are going to take them around the best bits of Australia for a couple of weeks, including the Great Barrier Reef and camping in Kakadu (with the snakes and crocodiles) - wish I could do the same with all of you - but I guess we will just have to swap stories instead!
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Penny- will have to read about Australia for now !!! My Book Club is reading THE LIGHT BETWEEN OCEANS ( ML Stedman) this month....it's a very emotional story about a Lightkeeper on Janus Rock ...south of Perth (?)...I'm assuming it's a real place ??? I will be hostessing the discussion later in the month along with providing snacks (some of our members are SUPER CREATIVE...so far I know I'll have Yellow Tail wine...my favorite)...any Australian themed snack suggestions (easy) would be appreciated (will try to message you on FB too )
Anticipating my next 6 month checkup later this month...all my MD seems to do at this point is lab work and a lot of poking around, then congratulations ---you're doing great---see ya in 6 more months. Think I'm ready to push for a scan just to be sure but I suppose that will get shot down....anybody able to change their MDs mind on that ? Hope everyone is doing well and having a terrific summer !
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