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August 2015 Chemo Group

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Comments

  • KateB79
    KateB79 Member Posts: 555

    Bluefrog, you look great!

    DeeRatz, again--I'm with you, sister. On all counts.

    MsBrompton, sometimes the cancer card must be played. . . .

    Musosgirl, I think I've decided that life is too short to abstain completely from alcohol. I've always enjoyed my spirits, and I see no reason to stop enjoying them. If folks on my medical team tell me to cut it out, I will, but until then: moderation in all things.

    Superius, how's worrywart?

  • deeratz
    deeratz Member Posts: 318

    MSBrompton-I say yes to the cancer card. It is in our hands and can be played at any time!

    1 year ago today my life was forever changed. I went for a mammogram just as a precaution to recheck an area I was concerned about 5 years earlier(was just thickening in the breast then) What I thought would be a quick procedure turned out to be not so routine. Heading to my 7:30am appointment, I figured I would be at work by 8:15. After several mammograms and a very extensive ultrasound that morning is forever frozen in my mind. The look on the radiologists face, followed by these words....You Have Cancer, and it has spread.... The look on my daughters faces as I told them I had cancer.

    I have learnt who my real friends are, that my family is the MOST important thing in my world. I don't need more things in my life. I am grateful for each of you my virtual friends. You have helped me more than you will ever know. We have been to hell and back and we have survived.

    Much love to all of you

  • MsBrompton
    MsBrompton Member Posts: 324

    DeeRatz, big hug! What a moving post.

    I am about 11 months from the day when I found blood in my bra. We have all been on a journey we would not have chosen to go on, and I think we've all become stronger in some ways (AND, as you say, found out who are real friends are). This forum has been hugely important to me too. Thanks, virtual friends.

  • KateB79
    KateB79 Member Posts: 555

    I agree completely. I will never, ever forget the love and support I've felt on these boards, and especially in this forum.

    I'm grateful for all of you, my sisters!

  • superius
    superius Member Posts: 310

    Mammogram Tuesday. trying not to freak out.

    The thing is, last year was my very first Mammogram (well, the bump was difficult not to notice). Surgeon did physical exam Dec & all is clear. & I've trying to do the self exam. but how do I know what's normal, what's not? & I don't have a s/o that can say, "hey that feel different!" .... anyway I emailed the worrywart this pm & let him know about the upcoming test. He's been getting on my nerves lately, so I decided to tell him, let him freak out with me. but technically, he. doesn't. need. to know.

    I don't like end of the month -- was diagnosed on 28th. saw surgeon next day, 29th. Started Chemo on a 27th, last one on a 28th.

  • KateB79
    KateB79 Member Posts: 555

    superius, I don't like the month of July for similar reasons. Weird how our brains work, huh?

    I'm learning what "new normal" looks like. So much has changed in this past nine months, but other things have remained exactly the same. . . . Funny how life works, isn't it?

  • superius
    superius Member Posts: 310

    Just want to share this picture a friend posted this on facebook (she had whole bunch of surgeries for her shoulders in the past 2 years.)


    image

  • Musosgirl
    Musosgirl Member Posts: 305
    Superius, that is so true.

    I am on several different threads but you ladies are the ones I want to talk to. Probably because this is where my journey started. Or because you all are the most awesome ladies.

    I am terrified to start Tamoxifen. I am supposed to wait one more week to make sure my anti-anxiety med switch is good and stable. I already filled the script, but the more I read the more I think this may not be a good idea for me. It INCREASES estrogen?! But blocks the receptors? Hormonal birth control was horrific for me--terrible pain, cramping, nausea--and I ended up on a low-dose progesterone only pill. And even then it was for only a few years. Pregnancy hormones made me deathly ill so I had a tubal ligation after DS #2. And THAT whole mess led to my PTSD breakdown. Everyone says this will be different, but how, if it increases estrogen?

    Try it and wait and see, right? I am so nervous and get teary over it.

    Otherwise I am doing well. Surprisingly well. It took two weeks after radiation to start to feel human. Still have some healing issues from that, but it is improving. (As if I needed more radiation, today I forgot sunscreen when we went to little man's soccer game. We all burned, but I burned bad! And I don't normally burn...)

    Cutting out Dr. Pepper is hit and miss--I had several this week but my resolve is down when I am hormonal. BUT! I started walking again! 2 miles a night, 6 nights this week! Some nights I was worn out, some nights I was breathless, and then tonight I was literally one house from home when my legs wanted to just quit. I stopped and stretched for a minute and made it inside. But it feels so good to something GOOD for my body!

    I have my 4 week follow-up with my RO's PA this week. And Herceptin the same day. All of this seems so easy now--except the Tamoxifen. I know I COULD be one of the ones who has no trouble with it, but I just can't find a positive stone to stand on here...
  • MsBrompton
    MsBrompton Member Posts: 324

    Oh Musogirl, I feel for you. But all those side effects may never happen and/or your body will gradually get used to them and adapt.

    I hate Herceptin. I just thought I'd say that. Like a child stamping its foot! 14 down, 4 to go.

    Hang in there everyone. Love the 'healing is not linear' picture. True for the soul as well as the body!

  • superius
    superius Member Posts: 310

    Personally the Physical part was the "easiest". I think the mental/ emotional parts are crazier. I don't have lots of side effects from Tamoxifen - hot flash mainly, that kind of affecting the sleep. Nothing like joint pain or other stuff people talked about.

    Last week  at choir rehearsal, I was standing on top of the A/C vent seeking for air - pretty funny actually, for all the MD in the choir, at least. But YOU-KNOW-WHO is not happy about the hot flashes & sleeplessness/ waking up. & he's not even the one having them!  "you need to get 9 hr sleep"; saying something about the med messing up your body chemistry & you don't know how it will affect your body years later when you get older... is there something else  / Alternative Drs can do etc. I reminded him how Tamoxifen works, & he said, "I know what it does."

    Oh. ok. guess he read up on it... why was I surprised? He actually goggled "PacMan". Maybe he should go to MO appt with me next time! < roll eyes>

    Well.. Mammogram last Tue, spent the rest of the weekday trying not to stare at my phone, freaking out if the dr might call. :p

    I think the mood swing is part of the hormone change? but of course I can always have someone to blame!


  • KateB79
    KateB79 Member Posts: 555

    Musosgirl, it's not so bad. I've been on it for just under two months, and other than the hot flushes (they're more flushes than flashes, honestly) and creaky knees, I've been just fine. It took about a month to get adjusted, in terms of mood swings, and I suppose I'm a little more prone to road rage these days, but tamoxifen is nowhere near as bad as I'd feared. I say go for it--be prepared for side effects, but don't expect them. Kind of like chemo. :)


  • deeratz
    deeratz Member Posts: 318

    Superius-love the pic...it symbolizes the roller coaster we have been on. Oh worrywart, how he continually entertains us.

    MsBrompton-4 more, you got this!

    Musosgirl-Tamoxifen for me hasn't been that bad. Like Kate I have noticed creaky knees, but have crazy hot flashes(not flushes). I am also very emotional. Can cry at the drop of a hat. Not sure if it is from the Tamoxifen or just all the shit from the past year. I hope that it doesn't throw you into a tailspin and your body tolerates it well.

    I have had a wonderful Mother's Day. I went to a bootcamp with my daughter this morning followed by a nice breakfast at a little cafe. I had to come home and sleep after as I was exhausted. Then my youngest daughter made me some protein waffles. They were awesome. Enjoyed some time on my back deck visiting with my husband and kids. My husband is cooking up a feast for dinner. I feel very blessed to have a great family. One year ago my breasts were trying to kill me. So happy I survived the year and can celebrate.

    Happy Mother's Day to all of you beautiful warriors. You may be a mom to fur babies or the two legged kind. They all love us and rely on us daily. Nice to celebrate us!(I'm wondering if it is just a holiday here in Canada)


  • molliefish
    molliefish Member Posts: 650

    "and I suppose I'm a little more prone to road rage these days" -- bahahahahaha you're telling me Sister.. and I'm a cop. I'm supposed to be calm and take it all in. I owe the swear jar about $50

  • Bluefrog76
    Bluefrog76 Member Posts: 250

    Nope Dee, we have Mother's Day, too. Hope everyone had a great one no matter how you spent it.

    Re: tamoxifen...I've finished four 30-day supplies. I definitely have several hot flashes a day, mostly in the night, but they're tolerable. My short term memory is shot and sometimes the wrong word comes a split second before the right one (like asparagus when I mean eggplant), but that may be lingering taxotere effects. I did have two very heavy periods post chemo while on tamoxifen so we've added a Lupron injection every four weeks. I do find that I'm pretty stiff, but once I get moving it is better (and some of that may be my extensive bone mets!). The best part is my tumor markers dropped even further after starting tamoxifen and are holding in the normal range, so I can tolerate some side effects.

    Love to all.

  • VickiRides
    VickiRides Member Posts: 163

    I just finished my first bottle of tamoxifen. For me side effects have been minimal: mostly hot flashes and sore joints, mainly my hips. My last acupuncture session focused on the hot flashes and insomnia and I think both greatly improved last week. I was able to sleep in this weekend!

    Bluefrog, your picture is adorable!

    Continued healing for all ...

  • ravensally
    ravensally Member Posts: 45

    I started arimidex a few weeks ago. I have some joint pain, most noticeably in my jaw but herceptin has been making my hands ache anyway. It's not too bad. If this is as bad as it gets I'm good to go. I have hot flashes about every hour. I am SO ready to be done with herceptin. I have until August. My port was blocked this last time and I ended up getting an iv. My main complaint right now is weight gain. I've put on 15 pounds and it's uncomfortable. Just keep swimming, gals

  • KateB79
    KateB79 Member Posts: 555

    RavenSally, I've put on weight, too, but I chalk it up to the carb-o-palooza I've been having for the past couple of weeks. I really, really, abandoned my healthy eating program there for a while. Time to get back on the train.

    I forgot to mention the short-term memory loss that tamoxifen seems to be causing. (See what I did there?) Also, the fact that I damn near cried in a work meeting yesterday when something someone said rubbed me the wrong way. I'm with DeeRatz, though--how much of the emotional stuff is due to just being fragile from all the shit I've endured for the past nine months? Who knows. I'm glad I have a therapist and a good yoga teacher, and access to quality Michigan microbrews. (I also abandoned the teetotaler identity I took on during chemo. Life is short. Have a beer or five, just not every day.)

    Work is on my last nerve. But, whatever, that comes and goes.

    My parents are coming to visit next week, and I'm stressed. My dad has advancing Parkinson's (including dementia), and my mom just had a chest CT and thyroid ultrasound--I think her primary care guy suspects something sinister. Needless to say, I'm trying to avoid going around the bend; they live a state away, and I can't imagine what life would be like if something were to happen to her, primarily because she takes care of both my dad and my autistic uncle. . . .

    I guess I'm a negative-Nancy right now, but DAMN, it feels good to vent!

  • deeratz
    deeratz Member Posts: 318

    Kate-it sounds like you have lots on your plate. I hope your moms scans come up clear. You don't need that worry right now.

    I too have put on about 10 lbs, when I put my jeans on it is like a flesh explosion. I feel gross. I have been eating well and trying to go to the gym 5x/week. I can't seem to shed a single pound. My post chemo pause/Tamoxifen filled body wants to keep the muffin top. It is most frustrating to say the least. I refuse to buy new clothes so something better start happening soon.

    I am having terrible short term memory loss. I actually didn't make a successful re entry into the work world. I couldn't concentrate, couldn't remember a thing. Came home with a migraine every day. It also doesn't help that I don't really have a job and they wanted me to start packing up my old patient files into boxes. Yeah well I have lost enough in the last year, my breasts, my old self & my job I loved. They are looking for a new position for me(I'm in a union so I will have a job). At this point I can't remember anything short term so starting a new position is out of the question. So I will remain on disability for the summer, have revision surgery in Sept and return to my new job in Oct. I should be recovered by then.

    Kate I also like your have a beer or 5. Summertime=Yardwork=beer rewards.

    I am going to try and enjoy everyday, get stronger, loose these 10 stinking pounds and Hopefully feel like my old self again. Sick of being a crybaby.

    FxxkCancer, that is all

  • MsBrompton
    MsBrompton Member Posts: 324

    Good moans, ladies!

    I can recommend septicaemia for losing weight. I've just got back to normal LOL!!

    OK clever people, question for you. I like my power walking, and even occasional jogging. I got a sore right knee a few weeks ago, and had an MRI scan which showed bursitis. So they did the usual sticking needle in it and filling it up with steroid. All OK for three weeks then it's got worse and worse. Now I'm thinking, this bl**dy bursitis gets worse every time I have the bl**dy Herceptin. I just wonder if that's what has caused the knee swelling in the first place. After all, I jogged and power walked before breast cancer no problem.

    Anyone got similar from Herceptin?

  • exercise_guru
    exercise_guru Member Posts: 333

    Hi ladies can I jump in on this Herceptin thing? Dee how do you know it is Herceptin that is making your arms ache? I am having lots of problems with my hands and I have no idea what to blame it on. Herceptin, arimidex, the oophrectomy draining my Estrogen. Also I am getting headaches sometimes which freak me out but my MO is not worried.


  • superius
    superius Member Posts: 310

    I actually had lost weight since end of Chemo. about 13lb. Although I did have the "abandonment" period end of last year, "hey the cancer didn't kill me, so I'm going to eat whatever!" "Oh look! Candy Table at wedding!" Then I had a spike with my blood sugar. Oops.

    My friend, who's an endocrinologist, said Tamoxifen would make the BP & blood sugar go up, & weight gain - hings that go with the loss of female hormones due to change in metabolism, loss of muscle and increase fat. I think she also said the hormones regulate body temp. So there you have it.

    Anyway, so I REALLY started walking. Before, I would used the parking structure at work, pretty easy walk. Since we have moved office in Oct, I found a route in the neighborhood with uphills & down. That really get things back on track!

    Good to know I'm not the only one being forgetful. My mind is also VERY good at Free Association, going so many direction, thoughts from totally silliness to crazy to -ve to +ve..... & the emotional stuff! Yikes.

    I almost lost it on the podium while directing my choir during Mass few weeks ago. The hymn "I Know that My Redeemer Lives" has this line: "He lives, and grants me daily breath; He lives, and I shall conquer death..." Bawling The singers were too far away to notice, but I was right by the piano, so WorryWart saw that & asked if I was ok...

  • ravensally
    ravensally Member Posts: 45

    exercise guru, I feel that herceptin has made my hands ache and the arimidex has made it a bit worse. I have a hard time closing my hands in the morning. all of this started with chemo. Now that I'm just on herceptin I feel thats the culprit. Google joint pain with either one of those and you'll see we're not alone.

    MS Brompton I would'nt be suprised if the herceptin is messing with your knee joint.

    My chemo nurse said that wieght gain was the number one complaint with breast cancer treatment. I have to step up my game and start burning calories.

  • KateB79
    KateB79 Member Posts: 555

    Herceptin makes my knees and hips ache. So does tamoxifen. I'm a lot of fun to be around these days.

    The good news is that the H aches go away after a few days, and I'm managing the tamoxifen aches with exercise and turmeric. . . . MsBrompton, have you tried turmeric extract?

  • MsBrompton
    MsBrompton Member Posts: 324

    Turmeric. Thanks. I will try it!!

    I just love all these practical suggestions. It may work, it may not, but at least we know what to try...

  • Musosgirl
    Musosgirl Member Posts: 305
    Oh ladies! This may get long, so I apologize now.

    I don't really have a lot of aches. My right arm aches sometimes and that is my surgery side--I just move my arm around more and hope it is just soreness and not lymphedema. But. Any time I stand up after sitting for awhile my left leg takes a minute to work right. It's not sore, not asleep. I just can't quite balance on it for a second. And my joints creak and click more than they used to--snap, crackle, pop.

    I am a weepy mess. I thought maybe it was PMS but that came and went, and I still cry daily. Worried it might be the Paxil to Effexor switch. I so want this to work. I am going to wait till I see my PCP on the 23rd and discuss how I am doing on Effexor before starting the Tamoxifan--that's only about 10 days later than my MO said to start it.

    Last night the whole cancer thing really hit me. I sobbed and sobbed. I finally asked "why?" and said "it's not fair!". I hadn't given myself permission to say those things but I needed to. Even now I am crying. Don't know if it is reality finally sinking in, or again the whole Effexor switch. But for the first time in a year it really seems real and I am scared and sad and pissed off.

    Last Saturday I got a sunburn, and I am still not healing. Still red, still painful. I am not a burner. This is just weird. I did use Silvadene one night and that has been the only little bit of improvement I have seen. So glad I did not schedule my symmetry surgery for April! My body is in full-on rebellion. It's like it has gone on strike and is refusing to have to work. Heck, I wanna go on strike too.

    Tomorrow is Herceptin day. I also have my one month radiation follow-up. So glad to put that, and my RO, behind me!

    But today... Oh, today. My DH had petit mal seizures as a kid--but they went away. For several years he had cluster headaches as young adult (college) and they went away. 9 years ago when I was very pregnant, and still sick, he had ocular migraines. He had had them for a few years but late in my pregnancy he had a really bad month with them and spent some quality time with a neurologist who said after extensive testing everything was fine--and they eventually went away. Today, he had an episode where one eye dilated and the other did not. Basically suggesting an aneurysm. But with his history any of the above could also be a cause. So he spent 11 hours in the ER to make sure he was okay. The CT scan came back clear--they did that when he got there at 1:00 but he didn't get results till 11:00 tonight! But the ER doc said DH needs to have an MRI in the next week--preferably in the next two days. Of course, HE could not order one--that has to be done by our PCP.

    I was such a mess today. First he drove himself to the ER when we had no idea if he was having a stroke! I am supposed to still be avoiding the ER--I finally decided no matter what the outcome, he should not drive himself home so I went up there around 7:30, after dropping the boys off at church with my sister. Then the doc says an MRI is HIGHLY advised. I kinda pushed for him to order it, even pulled the cancer card saying my boys NEED their father (despite me being NED since December), but short of a spinal infection causing life-threatening illness he can't get that approved. So we are home and I leave at 9:00 a.m. to go hang out at my cancer center all morning while hoping my DH actually gets on the ball and calls the PCP first thing in the morning.

  • MsBrompton
    MsBrompton Member Posts: 324

    Big hug Musogirl. This is a shed load of stress. My husband had a minor operation on his haemorrhoids a couple of weeks ago and it brought all sorts of emotional baggage to the surface. We are all struggling with the subliminal. Saying a prayer for good outcome for your man.

  • VickiRides
    VickiRides Member Posts: 163

    Another hug, Musogirl. I am sorry that you have to deal with this on top of everything else and I hope you get good news from your husband's doctors.

    "I am scared and sad and pissed off." That sentence struck a chord with me.

  • deeratz
    deeratz Member Posts: 318

    ((((((Musosgirl)))))) I hope everything is ok. Let the tears flow. Crying is therapeutic.

    Have any of you noticed that you sweat way more when exercising? I never used to sweat his much prior to the shitshow. I don't know if it is still all the chemo toxins leaving my body or what the deal is.

    I picked up my Tamoxifen from the cancer clinic yesterday. They have switched to Teva brand, was Astra Zeneca before. I slept way better last night as I had fewer hot flashes. I have my fingers crossed that it is due to the new meds.

    You gals have me convinced to try Yoga. I am so inflexible but my daughter has convinced me to go with her on Saturday. I'll give it a shot, it may feel good to really stretch.


  • SoCalGrl
    SoCalGrl Member Posts: 59

    Hello my August ladies - just checking in. It's good to read all of your updates. When I'm out in the real world, half the time I look at people thinking they have no idea what I've been through for the past year, so it's nice to come here and know that I'm not alone. Especially because it's the one year anniversary of this life fuckery.

    I'm still waiting on my exchange surgery. I had an EKG that came back "abnormal" so now I'm pacing around wondering WTF that means. I went to a new OBGYN yesterday and brought up oophrectomy since I'm on Lupron and an AI and I basically sat in her office teaching her about breast cancer treatment. She put me on the defensive a lot by challenging my treatments bluntly. "Why would you do chemo if your'e stage1?" "Why would you elect for 10 years of anti-hormonal treatment." Oh well.

    I'm definitely feeling the achy joint effects of Femara too. My knees, heels, elbows ache all the dang time. I feel like I've aged 10 years overnight but I guess I am lucky because I rarely have hot flashes.

    Musosgirl - much love and positive thoughts coming your and your DH's way.



  • superius
    superius Member Posts: 310

    {{{Musosgirl}}} prayers & positive vibes sending your way.

    So true, SoCalGrl, Has it been a year ALREADY? The other night I cried when I got the Mammogram result - All clear. I made it to one year! (almost). I wondered if my mind was waiting for the other shoe to drop? It also says I have dense tissue, so still have to be really vigilant. Like

    Picked up 3rd bottle of Tamoxifen today.