August 2015 Chemo Group
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Exercise, I am supposed to be co-teaching a couple of classes with our homeschool group this year (they were amazing and totally let me off the hook last year--taking my kids to classes and bringing us tons of food). So I need to either do it now or in December, and I did the lumpectomy last December before Christmas--not doing that again. I am actually in a pretty good place--have some strength built up after chemo and recovered from rads. I wish I had time to build my strength up more and lose some weight but we are talking July 26th for the hysterectomy--laproscopically assisted vaginal Hst. The plan is to do a reduction on my left side at the same time, and remove my port, so I will be recovering both up top and down low--I think this is best as I am not sure I should go under anesthesia twice in July. Still waiting on the official word from the PS that he is willing to do co-surgery since it is officially his in-clinic day. I am hoping the one Lupron shot will have plunged me deep enough into chemopause that the surgery won't send my body into shock. I'll have a six week head start, and since I had the shot Thursday, was supposed to start my period Friday, and all is quiet, I think it's working. I am taking 150 mg of Effexor, which might be overkill but so far no hotflashes which is the main side effect we are trying to avoid. I guess I wish I could just do Tamoxifen, but I also want every opportunity to watch my boys grow up and if surgery increases the odds I'll do it.0
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That sounds like a good plan. The OO-keyhole seems pretty good to recover surgery wise. I have talked to other women with the keyhole who found it very manageable as long as they didn't try to do crazy abdominal work. I wanted to get on my bike and kayak etc this summer and I am still finding that difficult. If your doc would allow you to wait to start AI for a few months I think you would feel much better. Personally I think the AI that kicked in at 6 weeks was just too much. I wish I had stayed on Tamoxifen for a few months until I got on my feet and then tried to switch. It placed too many things together at the same time and my body had too many side effects to where I couldn't figure out what to do. All the choices we have to make are sucky we just do the best we can.
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my period came back this morning. Ugh!
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Oh superius! I am so sorry. Has your MO discussed hormone suppression
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No, we've never. But I will update her. She thought it would come back just a couple months after chemo.
I'm never gonna use those eggs, so am bumped I still have to deal with this. Anyway... I donated most of my supply to my friend's Ecuador relief. so probably have to go to Target soon.
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Superius, that just adds insult to injury, doesn't it? I'm so sorry!
No period here, so I guess Zoladex is doing its job. I see my NP tomorrow because of what I think are Zoladex SEs; they've kind of abated since that first Very Bad Week, but I figure it can't hurt to keep the appointment. . . .
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Supierius-Nooooooo!!!! That really sucks!!!!
Well I have decided I am 45 going on 80. My knees have been sore for a few months now. Pretty sure from the Tamoxifen. Last week I bent my knee in bed and it made a loud snap. Straightened it out and it snapped again. Was extra stuff and sore the next day. Didn't think anything of it, crawled out of bed feeling like a tin man as per normal. Well I was dancing at my Nieces grad and apparently my knees don't appreciate my dance moves. My left knee is all swollen and I can't hardly bend it. This has been going on for a week . Scream....I WANT MY OLD LIFE BACK!!
I just want to feel normal again and I am having a hard time accepting this new normal.
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DeeRatz, I hear you. I'm 37-going-on-80.
I will say this: on days when I exercise, even if I just walk a couple of miles, my body feels better. Sometimes my back hurts and it freaks me out (mets?), but stretching it rally, really helps. I have to start doing more yoga.
One thing that's pissing me off to no end is this tamoxi-Buddha-belly. . . . No boobs + belly = GRRRRR!
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Kate, you made me LOL!!!
well.. before chemo, MO actually mentioned about suppressing to protect the eggs (or even preserving / harvesting). errr... because I'm single & no kids? I didn't see the point, never thought / planned to have kids anyway. So I thought Chemo kinda took care of it. Darn it.... I was in a "woohoo I can wear white anytime" phrase earlier -- got pair of white jeans & a very nice fancy white party dress.... Do I need to return them?
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I'm 49 going on 80. Literally. I was walking towards my husband this weekend and he said he didn't recognize me but wondered who the old lady walking around was. Really?? The ache in my hips and knees seems to be better but last week my chest hurt so bad that I couldn't lift a water bottle. Sore ribs from radiation? Sore from painting? Sore from crashing my motorcycle? Who knows. I have a follow up with my breast surgeon this week and my MO next week and I'll add that to my list of complaints. Thankfully it felt much better after a couple of days.
I got to do a trail ride this weekend but my stamina was terrible and had to have a friend ride the bike the rest of the way. Sucky, sucky, sucky.
But at least my period is still gone.
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When does the ride end?! I want off! 3 weeks of chest pressure/shortness of breath/heart flutters/blood pressure spikes and it is getting worse. SIL said it could be the Effexor--but I have to stay on the Effexor to take Tamoxifen. MO and ER doc still think it could be the port--going in to my cancer center tomorrow morning to talk about all this. I pray it is the port and they will just remove it and I will be fine. Switching off Effexor is more complicated--and while I COULD go to an AI (and go back to Paxil) after my hysterectomy later this month I am not keen on that option either. I was so close! Now I feel like my heart is going to explode all day. So tired.
Tamoxi-Budda-belly! I had a belly before the meds. So scared of what trying to get in shape will look like this fall. 🤔🙄😜
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Aw, Musosgirl, I'm so sorry. What a serious bummer. Could it be anxiety causing the heart feeling? Have you tried Ativan at all? I'm not a big fan of benzos, but Ativan got me through the worst panic attack I ever had, back during the Infusion that Shall Not Be Named. . . . Could be worth a shot, at least for the short term.
Sending big love to you. I really hope they get this figured out soon.
And, yeah, I want off the ride, too. Wheeeeeeeeeeeeeeeee!
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Thanks ladies for making me feel like I'm not alone. Chemo and Tamoxifenthe thing that keeps on giving.
I have started going to Pilates, as my old gym routine wasn't working for me. My body seems to take longer to recover than it used to. I felt beat up all the time. I kept pushing myself hoping to get back to the old routine. Well being 80, I just can't do it anymore. So I decided to give these Empower Pilates classes a try. They are for anyone who has been through cancer treatments. Today was my third class and I really enjoy them. The stretching is great, and my knee even tolerated it.
I have been struggling with my Buddha belly as well. I do have Foobs but my stomach is not going away. It doesn't matter what I do I can't lose one pound. My body wants to hold on to every single ounce. My clothes are tight and uncomfortable. I feel like a sausage that is exploding out of its casing instead of feeling healthy and fit. Insert scream again...
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Musogirl, I hope that your doctors can figure this out and that you're feeling better soon.
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I can't take Ativan--it is too strong for me. I take a small dose of Klonopin (Clonazepam) everyday and am supposed to take a full mg if I have an anxiety episode. But I would say only two days out of the last 3 weeks have had anxiety thrown in--I get hot flashes during my flashbacks and since they have been limited to those two episodes I am comfortable saying this is not PTSD related. Freaked me out the first day thinking Lupron hot flashes were kicking one, but it was just that one morning.
I am going to look into a yoga class after both of my surgeries are done.
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re the buddah belly ladies, me too... but..................i've gone back to my crossfit peeps and after 9 weeks of consistent work out I've taken the buddah belly off.. well not all of it, but def 2 inches ( I measured before and after). I feel so much better. I still have hot flashes, achy feet in the morning, a L'il cranky now and then, but i've decided the key is to accept that this medicine may keep me alive to my goal age of my granny (96 this year) and that exercise diet and adaption will overcome.. I know i've had an easy ride compared to some of you ladies ( You are all my HEROS) but I did want to give some encouragment that we can find a new normal. And be happy again.
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Saw a random PA since my MO is out of town and his PA was booked. We were not communicating. It was a disaster. She did put in an order to remove the port, but no rush, so the cancer center tried to schedule it for the 21st and I said no. They sent the order over to the hospital who scheduled it for the 13th. My heart and my head HURT! I don't know about this waiting a week BS. And they want to do a pre-op to remove the port? I didn't have a pre-op to put it in!
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So I freaked out and came back to the ER. The nurse cannot access my port. If it gives them enough trouble they may really take it out tonight. Now just praying it really is the port and that I feel better once it is out..
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Musogirl sending good vibes your way. I hope that they get this resolved for you. Hang in there, remember how far we have all come and what we have survived. You got this!
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Musosgirl, I hope they got it the heck out of there! Please keep us posted, and know that we're sending good vibes your way. You can do this!
I'm planning to have mine removed in my surgeon's office, with a local anesthetic. They think I'm nuts, but I'd just as soon not have more anesthesia.
I'm not on the same page with my MO right now--she's being stubborn about the CYP2D6 test that I want (to see if I'm metabolizing tamoxifen). But other than that, I'm told that they'll see me in three months. Last Herceptin is next week. Other than the Zoladex/tamoxifen and getting tested for BRCA next week, I guess treatment is done? <gasp!>
FWIW, I'd put money on being BRCA negative, but stranger things have happened. Like getting super-aggressive BC at 36.
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Well, they admitted me. Can't take it out today but they will do it tomorrow. Most of the doctors keep trying to convince me I am having anxiety attacks--but one my nurses said she has seen ports do awful things and she thinks I came in at the right time. They gave me anti-anxiety meds and so far the pressure and shortness of breath persist.
Kate, my genetic testing was negative so it's possible to be young and just be that random statistic.
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I haven't done the BRCA. what finally made you decided to do it?
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You're in my thoughts, Musosgirl. I hope they get that port out soon!
I met with my surgeon today for the pre-op for getting my port out. He had the results of last week's CT scan: no sign of cancer! Whew! What they saw on my MRI was scarring, either from radiation or a cold. He also reassured me that the pain I've been having in my chest is also from radiation scarring. So more stretching and exercises for me. Port removal is on 7/25.
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Great news, VickiRides!
Fingers x'd for you Musogirl.
Today I sat in that pesky chemo chair one last time. Had my 17th out of 18 Herceptin injections. I will give the last one in 3 weeks time at home. I will NOT miss sitting in that chair (one of you called it "like a mani-pedi chair without the mani-pedi"). But the nurses were nice.
Here's me looking at the phlebotomist jabbing away to get my blood. But the good news: my onco doesn't want to see me for SIX MONTHS!
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Great news, Vicki!
Musosgirl, it sounds like things are going to be under control soon. I'm so sorry you're back in the hospital. Big hugs.
Superius, genetic testing has always been on the docket; we were just waiting for my insurance company to deny the appeal for MyRisk before doing BRCA 1&2 alone. I get the blood draw next week, same day as MY LAST HERCEPTIN. I had MY LAST ECHO a couple of weeks ago (it looked good), and saw the NP yesterday--most of those weird symptoms last week they're chalking up to Zoladex and dehydration. Not mets. Thank God.
Ms Brompton, I love your facial expression in that pic. Congrats!
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Had my echo--waiting on the results. Did a stress test--that went well. My heart is fine! Just this pressure and shortness of breath. I have cried so much since getting here. These doctors are awful! I did not have anxiety until they started in on "oh, it can't be the port, you must be having panic attacks." Why do they just dismiss the 2 oncologist's who said it could be the port--granted they did relent and convince a surgeon to take it out--but very begrudgingly. And I have fought PTSD for years! I know my anxiety and how it manifests. But once you have a mental illness you are just "crazy". Anyway, twice now we could not access the port and THAT convinced my DH that something was wrong with it and it should come out regardless. Thankful for him and a nurse who immediately said "sounds like the port." At least SOMEONE doesn't think I am crazy.
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Hat off to you all who are Her2+. Sometimes I felt I got it easy (if that makes sense...).
Musosgirl: amusement for you from the "WorryLand" ~~
The worrywart had been acting.... "chivalrous" (?!) So you probably remember we got in trouble with the choir elders with me getting water bottles for the WorryWart. (Got alot of "disapproving Mom glares") Usually at weekly choir rehearsal (and sometimes at Mass), I am the first to arrive (even before the maestro), So I am the one setting up stuffs -- open up the piano & organ, take out the books from music room (worrywart's & my books), Lamp, etc. I've been doing this set up for years. We are also the last one to leave after rehearsals - putting things away, locking the church up...) The only times I didn't were if I am out of town; or last year when I was not allowed to do heavy lifting after surgery and with the PICC. Last Wed, I did my usual stuff, I was carrying the books when the WorryWart arrived. & he took the books out of my hands, "you don't have to do that."
The thing is, about 2 months ago, he had No Problem asking me to to go Startbucks down the street to get him coffee (& something to eat).. Mass#1 ran 20 min late & he only 10 min before next one. At the Coffee Hour, they only have the powder creamer & he's eliminating that... Anyway.... they found some half & half in the parish kitchen, so I didn't need to go. So Suddenly he won't let me carry the books?! ?!?!?!?!
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Superius, enjoy it while it lasts!!
The port is out and I am home. Feeling better but won't know for sure until the drugs completely wear off.
But! WHAT THE HECK!! I am bleeding? Can't tell if this is a period (3 weeks after my Lupron shot) or blood in my urine. Told the nurse and they still sent me home. If I have a full period this may change my MO's mind on the hysterectomy/oopherectomy. My ovaries are more stubborn than me and that is saying something!
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Welp, I'm not getting my last Herceptin next week after all, because something is going on with my WBCs and platelets. Routine CBC to rule out a UTI (pelvic pain caused by Zoladex, or so we're thinking) confirmed the trend downward since chemo ended in November--for the first time in my life, I'm neutropenic. My MO is doing another CBC in two weeks, along with a manual slide review and some other tests. I hope to everything holy that it's not leukemia or bone mets.
See where my brain goes? My MO's office says not to worry, and it'll be fine, and it's probably just something with the meds, but I'm freaking out over here. Sadface. Damn it all, this was only supposed to be a year of s*** and then I could get on with my life. . . .
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Kate I am so sorry! This is scary news. But hopefully it's just your last bump in the road before being done
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