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2013 Survivors!!!

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  • juneaubugg
    juneaubugg Member Posts: 516
    edited May 2017

    I've been on 300 mg of gabapentin 3x/day. No side effects. No "buzzing" in I miss a dose like Effexor. Hot flashes are minimal when I take it consistently.

    Short term memory not the best after a year on it. So I went off it for a few months. Hot flashes came back pretty badly. Back on it now. Memory is fine.

  • Cher56
    Cher56 Member Posts: 140
    edited May 2017

    Hi all you beautiful ladies

    I've not caught up on all the posts I sorry to say. I've been a member for 5 yrs this month . There was much disagreement about the type of C but in the end it was decided it was TN. I've done great except for the RA / OA which literally had done me in.

    Well new journey. Started with Pancreatitis 3 weeks ago. 2 Weeks ago ended in hospital. Hadn't been in overnight since my double mastectomy.. Well my liver numbers went crazy high. Thru got me into CT 1 day, MRI the next (next day for results) day after that into ST PAULS for an ERCP,.. Unfortunately there's a mass in my pancreas. The 1 Dr i spoke with didn't think that it'd be from the breast cancer. I dunno.. Anyone heard of that? Have next week to wait for biopsy results. Had to have a stent out in the bilary duct.. Get that or in a month

    I sure hope everyone is doubt alright. Life for me for really normal and busy. But now have a new fight whether or not is cancer.. Hmm geesh God sure thinks I can handle anything. Lol

    Lots of love to all & hugs

    Cher

  • juneaubugg
    juneaubugg Member Posts: 516
    edited May 2017

    hi ladies!! (Cher sorry to hear about your struggles!)

    Just a quick post to upload this from my dinner with Ramols this week.

    image

  • Joanne_53
    Joanne_53 Member Posts: 714
    edited May 2017

    what a great picture...Ramos your hair is SO cute. Thanks for the,picture Juneau.


    Cher keep us posted on your updates please. I go the MO on June 5 for my semi annual appt. I will be talking about 5 years on an aromitose inhibitor, probably Letrozole. Am I scared, ABSOLUTELY. My quality of life has increased in the last month being off tamoxifen... no burning feet, no tired bones ..

  • Believe777
    Believe777 Member Posts: 540
    edited May 2017

    Great smiles. You both look wonderful. Your "Happy" is showing.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited May 2017

    hi fellow 2013 Survivors. Any one else told that they could go off their cancer drug if they wanted to? I always thought at least 5 yrs was the norm. I was having troubles on AI's. First one made me feel 90. Next one raised my bp and cholesterol and thinned my bones. She told me if I wanted I coukd go off everything.She said up to 80% of younger women go off AI's cause of the side effects. I asked to be put on Tamoxifen again. My new MO confuses me

  • Jennie93
    Jennie93 Member Posts: 263
    edited June 2017

    I don't see MO anymore. Back to just family doc. She encourages me to hang in there till 5 years, but understands that quality of life is important too. Right now just taking it one day at a time.

    Oh and doc is not concerned about high cholesterol or BP while on the AI since they were fine before.



  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited June 2017

    As for me, Lymphedema for first time ever and upper arm big and not going away. Fingers tingling most of the time and can't sleep on my right side due to arm/shoulder pain. Saw RMT Monday and she is going to send me a colleague who does manual lymphatic drainage. Saw physio on Wed. for knee and LD arm. He is concerned. Saw PS today for 6 month post reconstruction surgery. I am now on Dr. Lennox's waitlist again but ASAP because it is not working out and so after all this time, I have decided to get rid of the mess and also he will remove implant on good side. Knee surgery also on the agenda but after that I am looking forward to moving on. Well, I am hoping so. My swan song trek that I led in Nepal in May went well despite my knee and LD. But I am done high altitude and lots of high pass trekking! My group loved it totally and so worth to pass on how much such an adventure can change a person's perspective and future.

    I plan to stop AI's at 5 years which is next March.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited June 2017

    Maria, how many nodes did you get removed? I had some Lymphedema when I returned to work to soon and tore out part of the underarm incision. I was able to get rid of it with OT and kinetic taping to drain the nodes. I had 9 nodes removed.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited June 2017

    ngrrl, I had 8 in sentinel node biopsy removed as BS realized it looked bad~~6/8 positive. Axillary dissection with mastectomy was another 6 and 1 positive even after chemo. Now 4 years post chemo/rads this is super frustrating but then the reconstruction has also been problematic and who knows is last go in December when serious cording and contractures of implant were dealt with.

  • juneaubugg
    juneaubugg Member Posts: 516
    edited June 2017

    marianelizabeth: All

    Of that SUCKS! I'm sorrr your still going through it. I know how much you lived your treks. I'm sending you love and good vibes.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited June 2017

    juneaubugg, no worries it will be good to have this done. I have realized over the past year or so that I am no longer attached to the idea of having this fake boob. Clearly I did try and even pre op last fall I suggested to PS we just take it all off but he said we should try one more time. As for treks, not getting any younger and though I loved this last swan song trek, I don's love travelling half way around the world either and now can do more hiking in N. America! No porters or mules unfortunately but day hikes and/or staying at a base campsite is good too.

    Now have a staph infection in my nose and finally went to drop in this AM~~high altitude/semi arid trek so super dry nose and staph lurking I guess. Seems a minor penalty!

  • juneaubugg
    juneaubugg Member Posts: 516
    edited June 2017

    marianelizabeth; I love your positive perspective. You've always inspired.

  • Scottiee1
    Scottiee1 Member Posts: 1,790
    edited June 2017

    Hi everyone.....❤. Some of you will remember me and others won't know me. Let me just say off the bat I'm sorry for all who have joined recently and to everyone else, I send my long overdue love and good wishes. I always felt a little frustrated that not enough women would come back to,let us know how they were doing re s/e after completing their als. Well, I made a promise that I would, so here I am. I finished five years on etrozole back in March, so it has been 3 months L free. Maybe it is too soon to post as I have heard it can take from 3 months up to a year to notice differences, if any. From the first day I started L till I took my last pill, I was plagued with nausea. I survived on Gravol suppositories to give me a window of opportunity to eat. As a result, I lost a lot of weight. Miracle! My nausea left me immediately and I have not had even one bout since March. However, I am gaining a lot of weight and finding it difficult to drop it....lol. I also have a little more energy now though not running marathons....lol. I guess at seventy (this month) that's to be expected. Another thing I have noticed is that my mind seems to be a little "clearer" and perhaps memory too. My friends might tell you different though.....haha. Muscle and joint pain are much improved, although I'm still stiff after sitting or lying for a,period of time. However, many positive things to be grateful for. At the end of the month, I will turn 70, and I'm looking forwrd to 80 and maybe 90.....lol. I hope this gives hope to all who are still in treatment and dealing with these aweful s/e.............




  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited June 2017

    Ah, Scottiee, you and I are old buddies and good to see you here and post about L too! You know I am quitting March 25/18~~at least that is my plan though MO said in May that we will see! Saw a RMT 4 times this last week for manual lymphedema drainage and see the only LE doctor in the province tomorrow at 1000, same time our moving truck starts to load for departure Tuesday to Victoria. I love to stay busy haha. Surgery to remove all that recon stuff is next Monday and I will be coming back next Sunday to finish cleaning this house and then will stay with friends until Thursday when my son flies down from the for days off and to see this home for last time and to take me back to Victoria. He has just completed his 2nd year of nursing and today started his first 12 hour shift as an ESN (employed student nurse). I will be teaching him drain management which he has not learned yet~~LOL!

    I am so excited for the next adventure in Victoria and losing the implants etc.!

    Scottiee, I too hope we hear from more of us~~Juneau you are so good on here.

  • kkuziel
    kkuziel Member Posts: 77
    edited June 2017

    I too feel kind of guilty that I only post when my ass is on fire and not when things are going well, cancer wise, so here goes. Retired in September after 38 years of teaching middle school (and still have a full head of hair) I had no real plans, but hoped to have a quiet first year, but as they say life is what happens when you're busy making plans. October came with the news my father was terminally ill from liver disease. He did okay through the fall. I had a breast calcification scare that screwed up Christmas and the month of December (have moved mammogram three weeks later to avoid the holiday rush at the hospital) thankfully just dead fat (why never in your butt)

    January my dad took a turn and I spent lots of time driving back and forth (three hours one way) to see him and help. He kind of rallied until late March when he died. Quickly, talking one minute, gone the next, with little pain. Not so bad. Just got started doing all his final paper work when my husband, on a remote kayak trip, had the "widow maker" heart attack. Fortunately, by some miracle and several twists of fate, he made it to a satellite heart center and he came out of it with little to no heart damage. The crazy part was no one he was with had my phone number and all I got from his phone was a cryptic message that was all broken up say "Marv, heart and hospital." What followed was a very tense five hour drive as I headed to the Upper Peninsula if Michigan. Finally someone found someone, who knew someone, who knew someone, who had my phone number so I at least knew where to go. (I had passed the hospital he was at and had to backtrack back to the Lower Peninsula)

    We're now adjusting to the new normal. I can say without hesitation being the person doing the care giving is far harder than being sick. I had no idea.

    So a few bumps, a few blessings and some normal stuff thrown in for fun. I head back in a couple weeks to have pictures of "Dick" taken (bad boob, Jane is the good one). Nervous. Hate to return to the scene of the crime. Feeling well, four years of femara have thinned my bones and now take Actonal. Not happy about it, but it may have happened anyway. Just hate adding another med. Enjoyreading and seeing your posts. I'll try to get back more often.

  • Joanne_53
    Joanne_53 Member Posts: 714
    edited June 2017

    kkuziel, you have been through a lot this past year ... It is difficult long a parent but we have to believe there is a better place. I am so thankful your husband is doing so well. Take care of yourself too while,you take care of him.

    Marian, I hope everything goes well for the move and then the surgery. How proud you must be of your son. I am sure he is happy to help mom out when the time comes. I hope your move went well. I have a cousin I Oak Bay. I read that somewhere. Don't overdo it.

    I have just,started Letrozol ... 3 pills down and 5 more years to go. I had 5 on tamoxifen and now to try 5 on Letrozol. Not worried about bone loss because I am larger boned but am worried about the other side effects. I will take one day at a time.

    Happy summer everyone. Get out and enjoy it. Sun and fun and family 😎


  • websister
    websister Member Posts: 405
    edited July 2017

    Hi everyone

    Checked in today and read up on all that is going on - Ramols and Juneaubugg - love the picture of the two of you; so happy that you could meet up for lunch!

    Marianelizabeth - sorry to hear of all you are going through with the lymphedema, knee, staph infection and the implant removal surgery. You certainly have been keeping busy - nice to hear about your son and nursing - I bet he did great with the drain care for you.

    Cher - wondering if you have an update for us regarding the mass in the pancreas?

    Scottie - it would be hard to forget you!!! So good to hear from you and good of you to check back in and tell of your experience post aromatase inhibitor.

    KKuziel - sorry to hear of your father's passing; glad you were able to spend some time with him beforehand. Your husband is a very lucky man - that must have been a very stressful drive for you to the hospital! Hope he continues to recover well.

    Ndgrrl - I went off of my Exemestane last fall for a few months - it made such an incredible difference in so many ways - I had my brain back, my joint pain was gone, I began to have energy again - I couldn't make myself go back onto it. I told my oncologist and she was OK with my decision, even though prior to that she was telling me that due to my positive lymph nodes I should be on it for total of 10 years. I found that a little confusing also but she seemed really happy with how I was doing. I may regret the decision but my quality of life is so much better now. It was my 5 year cancerversary on June 20th - the day I was diagnosed.

    So thankful for this site and this thread in particular - thankful for all of you lovely ladies and the support provided. So wonderful to check in and see your familiar names - and faces - you are amazing people!

  • iatigger
    iatigger Member Posts: 269
    edited July 2017

    Hi All, been a while since I posted to our group here. Was doing great and just living life I guess. Unfortunately side effects of that little Tamoxifen pill have reared its ugly head. Has anyone else in our group gotten the Endometrial Cancer DX from the known side effect of Tamox? Did you even know that this was a known side effect?? It seems like my original Onc kind of mentioned the possibility but made it sound like it doesn't happen at the same time way back when. I kept the thought in the back of my mind in case anything weird ever happened and lucky me started some abnormal spotting that got the ball rolling. Hysterectomy in a couple weeks. Fingers crossed for all contained and then I will hopefully be done with the craziness. But then I am sure my current Onc will want me to go on some other drug, and I am not sure I want to deal with any other side effects. Time will tell. Hope everyone had a wonderful 4th! Just spent it with some friends in the country BBQing and shooting fireworks. They just made them legal in Iowa again for the first time in 86 years.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited July 2017

    Oh no so sorry Iatigger. I do wish side effects were more stressed from these meds.

    I already had a partial hysterectomy when I was 38 so I never had to worry about that but I do remember them telling me I was ok to be on tamoxifen because of that. I wish there was a standard of care for things Dr's need to tell us about. I do worry about blood clots with Tamoxifen though. I have tried the Ai's but am now back on Tamoxifen even though I later had my ovaries removed so was put into medical menopause. Hugs. You got this

  • juneaubugg
    juneaubugg Member Posts: 516
    edited July 2017

    Hey ladies!!! See we are all muddling through life on life's terms. My dad is 78 and hasn't been right for a while. I'm pretty concerned. But I just keep living him while I can.

    I'm debating having my ovaries removed. My dr wants me to. But I'm going in to perimemopause, finally. And after hearing what you are all experiencing; I am not switching to the AIs. But if I stay on tamoxifen shoukd I get a hysterectomy just to be safe?! Jeez it's scary shit.

    My 5 yr DX date and and UMX surgery date came and went before I even realized what significance the date had. Guess things do start to blurt in the rear view mirror.

    And websister... so good to hear from you. Xo

    Love you all ladies!!!

  • iatigger
    iatigger Member Posts: 269
    edited July 2017

    Juneau, if I wasn't in the situation I am already in but my doctors were suggesting it I think I would go for the hysterectomy especially if you plan on staying on Tamoxifen. I will share more after surgery on recovery but nowadays with the robotic surgery i anticipate being back at work after 2 weeks so sounds easier than the mastectomy recovery. Dont know about everyone elses oncologists but the tamox side effects with regards to the women's region were glossed over pretty fast yethere I am living proof they do happen. Keep your eye appointments too watching for cataracts, just another little talked about tamox present.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited July 2017

    At or close to the 5 year mark for most of us, it is so good to hear from many of you. I want to respond personally but too tired this morning. But what seems clear, is that this F**KING cancer is still giving but we are still sharing for which I am grateful.


  • Joanne_53
    Joanne_53 Member Posts: 714
    edited July 2017

    l have stArted Letrozole now after 5 years on Tamoxifen. My MO said if I cannot handle it then we can talk about going back on Tamoxifen. Her concern is that there is a risk of thickening of the endrometrial lining for,post menopausal women. She said that I would have to be followed closely and be aware of any changes, ie spotting etc. Right now I am hanging on with the Letrozole. I do ache but I don't think anymore,then with Tamoxifen. I need to figure,out when to take it because it is affecting my sleep. If I develope the s/e then I will stop all together. I won't consider tamoxifen now because of the risks

  • ndgrrl
    ndgrrl Member Posts: 645
    edited July 2017

    I had my Ovaries removed in 2015 because they grew to the size of baseballs. The MO at the time blamed Tamoxifen. I bucked being put on an A1. After a year I finally agreed. First Armidex and I ached so badly I could hardly walk. I was then put on Letrozole and though I did not ache I ended up with blood pressure that was difficult to control, cholesterol that went high and even though I was on Zometa for prevention of cancer going to my bones, my dexa scan showef bone loss. I was on an Ai for 10 months only and now post-menopausal and back on Tamoxifen.

  • KarenZ0305
    KarenZ0305 Member Posts: 345
    edited July 2017

    Hi everyone! It's been awhile since I posted but I've been checking in on everyone and so happy to see you all doing well and for the ones who aren't that you are fighting through knowing we are in your pockets. I wanted to post because of what it looks like is the main topic - that evil pill tamoxifen! I know it's supposed to help us but the SE's are so not worth it. I have such joint pain that it really does ruin my life sometimes. I hate being the one walking the slowest because my legs hurt so bad. I hate that at 46 I had to have cataract surgery done, I hate feeling so blah all the time! I can honestly say the only time I feel good is when I am floating suspended in a pool (preferably on an island but more on that after my rant).Now at my last ob/gyn checkup when they did the pelvic ultrasound they said my uterine lining is starting to thicken (not terribly so but still) and instead of coming back in 12 months for a re-check to come in 6 months. Ugh! I told my MO and asked if she recommended a hysterectomy (ovaries are ok so would probably leave them) and her reply was do whatever your gyno feels is best. Whatever! Now my MO is not my original who I loved. This one I tolerate. When I told her I was excited because this was my last year on tamoxifen she said oh no you finish in 2018. But I started Oct 2012. I am not going any longer than I have to and I am putting my foot down at my next appointment. Ok no more ranting on to the fun stuff!

    We've been doing an island a year and I must say the best medicine is floating suspended in the warm waters of the Caribbean. I recommend it highly! Last September we rescued a puppy. He is a pit/lab mix and his name is Phil. I have never seen a more affectionate dog. He will climb up on your lap and hug you. A sad note is last April we lost my father in law to heart disease and my kids (as everyone) were devastated. So when I found Phil online and saw he had the same birthday it was a no brainer. The family is doing awesome. My mom is celebrating her 85th next month and still going strong! My hubbys business is thriving and the kids are fantastic! My son ended the karate season 3rd in the state for his age/belt group. So proud. My daughter is going to be a junior this year and in January we celebrated her sweet 16 with a great Gatsby themed party. Of course that day chose to have a blizzard! But everyone showed and had a blast! It's so nice to have these moments. Other than my aches I feel great. I did have to start cholesterol medicine but having the dog is a help. I've lost 15 lbs since we got him just by taking a small walk around the neighborhood. Slow and steady! Well everyone that is all on my end and thanks for the rant. I know you all get it. Really get it. Be well and love you all! (Here's a shot of my daughter before the festivities)

    Karen

    image

  • iatigger
    iatigger Member Posts: 269
    edited July 2017

    Happy Dance day! Pathology from the hysterectomy shows it did not invade the uterus. Will verify my oncologist agrees then all will be done. Interesting side note about the surgery, my uterus was 8 times larger than normal 800+grams. Had to increase the size of one of the laparoscopic incisions to take it out instead of the normal vaginal route. Crazy. Said normally they would just cut it in half but not an option with the cancer. Healing is going well, worst part is the intestinal gas pains. The rest is a piece of cake.

    All I can say gals, if you were on tamox at all alert your gyno to any changes. I really think catching this "side effect" early makes all the difference. Have a wonderful Tuesday!!

  • Jennie93
    Jennie93 Member Posts: 263
    edited July 2017

    Great news! :)



  • websister
    websister Member Posts: 405
    edited July 2017
    • That is great news, latigger- heal well!

    Sorry to hear about your concerns about your father, Juneaubug.


  • juneaubugg
    juneaubugg Member Posts: 516
    edited September 2017

    Great news latigger!!!! YAY!!!!!!!!!!!!!!!!!

    Just an update. My dad does indeed have bladder cancer. AND my sister was diagnosed with THYROID CANCER! WTF!!!!!!!!! When did I become the healthy one in this family!?!? Anyway- my sister will be fine, more of a nuisance she said. Not life threatening. They will remove 1/2 her thyroid in November (clearly not aggressive either). Dad not so sure. Went to the oncologist locally in Princeton, NJ last week. He is sending him to MSK in NYC to see bladder cancer specialists who can work in tandem (surgeon and MO). Sound familiar? One of the standard chemo regimens uses adriamycin. Heart breaking... I pray he doesn't have to take the red devil. It really nearly broke me. He's so focused on how uncomfortable a surgery would be (and losing his bladder - although they have artificial bladders now - maybe he can get one of those) but I don't think he understands how bad chemo is, even though he watched me go through it. If some said to me - I can cut off your other tit (I have one left) or you can go through chemo again, I'd slice it off myself.

    Anyway- please pray for my dad. Stage 2 and rather aggressive. We go to MSK on the 28th.

    Love to all who are still struggling... and love to all who are doing Ramols Happy dance each day!!! We are 5 years out SISTERS!! Who would have THUNK IT!?