Starting Chemotherapy March 2018
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Thanks everyone! I'm keeping it short for a bit. It's sooooo much easier! ❤️
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And also... I had my mammogram... And everything was good! That was one year after my last one...
Didn't jinx myself and had it the day BEFORE my birthday this time.... Lol
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That's awesome news, Bec-KY. I won't have a follow-up mammo until April--don't think I'll be particularly worried about this one. I've thrown so much at this stupid BC the last year. . .
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Bec-ky I love your hair and your humor! So glad your mammo was clear, big hugs.
I had my first bone density test on Monday and by my MO appointment on Tuesday I had myself just about convinced that my doctor was late because I had bone mets. I don't know how to not panic about these tests, but hopefully with time it will get better. I don't have to have mammograms anymore so that's nice.
My bone density was within normal range, but my left hip and femoral neck were borderline so I'm supposed to double down on my calcium supplements and weight-bearing exercise. They will check again in a year to see if the ovarian suppression is making my bones thin.
Other than my hair and nails being a mess, I'm feeling pretty good--can't believe my diagnosis was almost a year ago.
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hello ladies, just want to know if anybody’s here did TCx6. I’m stage 1 grade 3, my doctor is recommending TCx6 instead of TCx4
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Bec-ky and Persnickety, LOVE your look! Also sporting the short hair - longer just on top. Lots less maintenance!
Had my mammo and visits on the 15th - waiting on the doc as she had been caught in surgery, and the patient gateway site emails me new test results are available. I figured that was a good sign - so I read them, and yes, all clear. The days leading up to it were so stressful - and then such a relief after.
Doing well on the Anastrazole - still having the mini flashes and some joint pain but walking and light exercise really helps.
Hope everyone is doing well. We've all had quite a year, and now it's nice to be moving forward.
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Hey Ladies, thought I would check in. It's a big week and a big month for me! I am sitting in the chemo clinic having my second-to-last HP infusion. I saw my MO NP this morning and she told me it was okay to have my port pulled when the PS does my exchange surgery on Friday! I am waiting for a callback from the PS nurse, but she didn't think it was a problem.
So, on Friday I am getting new boobies and hopefully my port out and on 3/25 I will have my final HP infusion! It's been a long year, but I'm feeling very optimistic about moving on and leaving this mess in the dust. Hopes and prayers!
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Sidalee, congrats for finishing HPs...My wife still has 5 more.
I saw some posts for having H only or switching to kadcyla after TCHP, apparently you continued with HP like my wife does. I was wondering if your MO ever considered changing it at some point, did you have a pCR?
Thanks.
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Hi LilyCh, thank you!
I did not have a pCR after my 6 rounds of TCHP--20% of my very large tumor survived. My MO and I discussed Kadcyla a couple of months ago and while I am a candidate for it, we decided for several reasons not to change regimens: 1) I was at that time on cycle 9 of 13 and would have to start over, 2) Kadcyla contains a chemo agent and would be likely to impact my QOL, 3) the Catherine study looked at H only vs. Kadcyla, it did not compare HP vs. Kadcyla and 4) using Kadcyla for patients who are not Stage IV is not likely to be approved by insurance yet and is very expensive.
I will keep your wife in my prayers.
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Sidalee, thanks so much!!!
Coincidentally my wife also had about 20% residual tumor after TCHP x 6. We have mentioned the possibility of switching to Kadcyla a few times and (coincidentally again
) the MO mentioned the exact reasons as your (3) and (4) . We are considering to get a second opinion soon but I have a feeling the treatment plan would stay the same.One more question if you do not mind: you are having hormonal medications other than tamoxifen? why is that? My wife is planning to take tamoxifen in a week.
Thanks again.
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Sidalee, I knew I missed another question
: are you planning to take nerlynx after HPs?0 -
LilyCh,
I opted for an Aromatase Inhibitor with ovarian suppression instead of Tamoxifen partly because I was uncomfortable with the side effects, but also because my tumor was highly hormone positive and my MO said my risk of recurrence is about 10% less on AI vs. Tamoxifen.
At this time it is not planned for me to take any additional medications.
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Thanks a lot for the explanation, Sidalee.
I am having fingers crossed as my wife is going to take tamoxifen in a week. I saw lots of posts regarding the possible side effects and the debates about 20 mg or half the dose etc. The MO told us last week that 20 mg is the option, no alternative.
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LilyCh,
Hopefully your wife does okay on the Tamoxifen, just try to remember that a lot of people are doing well on these medications and they aren't as likely to come on the boards to post about it. The AI's come with SE's also and many of them fade over time.
There is a lot of debate about the dose right now out there, the most important thing is for your wife to be open and honest with her MO about her SE's and if you can't have a good dialogue with the MO maybe consider a second opinion.
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Hi Everyone,
I cant believe it's been a year already. Nice that we are all starting to move passed the worst of it. Just wondering if anyone else is taking zometa, and what their side effects are?
Tammy
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It certainly has been quite the year...I am still doing Herceptin and planning a big trip to Ireland next month.
But very happy to have had a normal mammogram
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Hey everyone! It's been forever since I posted!
I'm going through a divorce, and about to close on a house tomorrow! Think that sounds crazy? Well I can get through anything after last year!
Hope all of you are well! I still have lymphedema in my breast only. I massage it when I can but it's not terrible. It's annoying tho.
I have zero side effects on tamoxifen except an occasional leg cramp at night. Zero hot flashes... And I've also lost 25 pounds by stopping all the junk food and mms and pasta and rice.... Basically crap carbs I quit. 😂
How is everyone?
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Bec-ky, wow, a lot of changes! Congratulations on the 25 pounds, you go!!! Best wishes with the house and hope the divorce isn't too stressful. Change is good!
I'm doing quite well on Anastrazole, no complaints. I check in occasionally, sometimes it seems this was so long ago and sometimes it seems like it was only a little while ago. Keeping my weight down and walking 4 to 5 days a week. I keep trying to add weights, not so consistent on those!
Hope everyone is doing well. Hugs!
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It's nice to hear that people are doing well.
Bec-Ky, congrats/condolences on the divorce, I guess? And congrats on the house!
WCG, nice to hear from you. I'm also doing well on anastrozole.
I'm having implant revision next month and getting my port out then. Finished Herceptin on March 13, starting Nerlynx on May 19. I'm sitting for the GRE on the 18th, hoping to go back to grad school at the ripe old age of 42. Before cancer, the prospect of going back to school at this stage of life was too daunting, but now I'm like "how bad can it be? Not like it's going to kill me!"
I hope everyone else is doing well! I'd love to hear more updates!
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hapa - you go girl! I have a previous BA but have gone back for a BSN. Just started last September (while still doing rads). It's been a great experience & you can see in my sigline, I'm older than you
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Hi everyone...seems like a lifetime ago we started on this journey. I don't check this board nearly as often as I did in the beginning, but it is so great hearing everyone doing well and getting back to "normal" life.
Bec-Ky - omg! to go through cancer tx and a divorce? you are a rock! although, I have to say you make it look good. I love your short hair - it suits you! fun and sassy!
In the beginning, I wondered if I would ever reach the point where cancer wasn't the first thing on my mind in the morning, and the last thing at night. I remember reading on this board "you get bored with cancer". Welp, that day arrived, I am happy to say. I haven't been as good at shedding my chemo weight as y'all. I gained 20 lbs, largely from unrestricted snacking and treating myself to wine regularly, and no exercise. For the past 2 months I have been working hard at it - watching diet and lifting weights. Down 10 lbs, 10 to go. It is coming off so much more slowly than it ever has before. Thank you, menopause.
I have been on tamoxifen for a year. I seem to have tendonitis in my elbows and feet - tennis elbow even though I don't play tennis, and when I get up during the night to pee (3-4 times), I hobble with pain across the top of both feet. Once I'm up and about, it isn't as bad. My ankles swell periodically, and leg/feet cramps are a pretty regular thing. The hot flashes were pretty heinous - seemed to come about every 40 minutes, give or take. My MO started me on ditropan 2.5 twice a day. They are less frequent and less intense, and a lot less sweating. Downside - dry mouth (hence drinking more water and up more to pee), and I feel like an 80 year old man with an enlarged prostate. It takes me a while to pee. (ditropan is used for overactive bladder).
I don't feel like I have completely lost my "chemo brain". I struggle to find some words, and I routinely forget what I went into a room for. I used to be pretty good at carrying a conversation, or writing letters, and now it doesn't come as easy for me. I draw a blank or nothing sounds right. Guess I can scratch writing a book off my list some day.
I am starting to lose my curls, which is fine. I never quite knew what to do with them anyway. Sometimes I miss my hair being super short - so much easier to get ready. I am probably going to go back to pixie cut next time.
Take care everyone. It is nice to check in occasionally and hear from you all. No one who hasn't been through this can completely understand.
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hi everyone! I can't believe it has been over 3 years since we all started treatment. I'm not sure if anyone is still checking the board or not, but thought I would say hi and ask how everyone is doing? Things here (outside of covid) are pretty much back to normal. I also went through a divorce, it started after chemo and mastectomies and before radiation. He was nice enough to send me a note after radiation treatment to let me know "he knew I could do it." Enough time has now passed that I can almost laugh and roll my eyes at that comment lol! I am on letrozole still, but I only take it 3 to 4 times a week to help reduce the painful joint side effects. It has also been quite hard on my hair. I am wondering if any of you are still struggling with hair growth?? Cancer is still on my mind just not as often. I do still wonder how we are supposed to know if it comes back, there doesn't seem to be any blood tests that can show signs, which I find a little stressful. Feel like a sitting duck. 😬... I am sure it is normal paranoia under the circumstances. I hope you are all doing really well and staying healthy. Ta e good care 💜
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Hi Tlow, I'm here; alas, a couple from the dx in 2017/chemo in 2018 group are back with metastatic recurrences.
I'm so glad you're doing well. Wow, the stress of cancer treatment and a relationship break up - that's a lot to take, a lot of changes. And then crazy pandemic year. It's been a lot, right? Big hugs.
(oh, for recurrence monitoring, this UK site has great infographics on what symptoms to watch for & report - & insist they be followed up!. Secondary is what they call metastatic. https://www.abcdiagnosis.co.uk/resources/infograph... )
best wishes for you!
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Hi Tlow - Ahh, I see you're acquainted with my good friend paranoia! Actually, I don't consider it paranoia because recurrence is all too real. But I know what you're talking about. I had a lot more treatment after chemo and it was a really long road, but I'm in the maintenance phase, just taking anastrozole and hoping for the best, and dealing with a somewhat contracted implant due to rads which is right on the border of where maybe I should try to fix it but maybe I should just accept it and deal as best I can. I really hate how it feels though. Still trying to decide on that one. Other than that...I am definitely not the go-getter I used to be. I'm not sure why, but it's not for lack of desire. I take things on and I can even muddle through them but I'm really lacking motivation and I don't know why. Like, how can you want to be motivated but not be? It doesn't make sense. Your ex is a dick btw. I guess you didn't need me to tell you that. For hair growth, have you been taking biotin? I had to stop taking it because I was growing so much body hair, lol. But if your hair isn't where you want it to be, I'd see a dermatologist.
moth - I'm sorry you got mets. It sucks and it's unfair. I don't really know what else to say.
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Hi all - I still check in occasionally too. The past year was something of a distraction, wasn't it? I'm doing pretty well on Anastrazole - will be 3 years on that in September. Also due for a bone scan - to see if my osteopenia got any worse over time. Not too many complaints on the AI - I had kept weight off until lockdown and then yes, gained the infamous Covid 10 which is now the unrelenting 5. But not stressing too much over it - trying to focus on feeling fit and healthy. And working on reducing wine and cocktails again - those were back on the menu for the past 14 months. I will say that now vaccinated we're traveling and pretty much doing everything out and about - missed it so much especially travel. Sharing one weird thing, I was really apprehensive about letting my hair get long, kept it extremely short until January of this year, and then a friend and I without even discussing it just hit the "it's time" point and we starting growing our hair out. For some reason making it through the Covid year was the kick I needed.
Moth, sending a hug and a prayer - hope that your new treatment plan is helping.
Love to all - enjoy each day.
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HI ladies!
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Hi everyone. Back in the day I joined this group and the April 2018 group, which for some reason has stayed more active. All good here. 3.5 years into the AI, so about 1.5 years left. I was happy to see my normal hair return about two years PFC, which is what I'd read in several places on this site. Life pretty much goes on. Pretty wonderful. :-)
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I am counting the days until I'm off the AI. Things are going ok for me too so far, having a little contracture around my implants but haven't gotten anything done about it yet. I mean, who has six weeks to devote to recovery anymore? My hair came back REALLY thick for a while but it seems like its starting to thin out. For a couple years there I wasn't catching many hairs in my brush but now there's hair all over my house, just like in the before days. I may have to go back to my post-chemo pixie!
Good to hear from you Ingerp!
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