Starting chemo February 2018
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lolotte and walden- Hi. Haven't read your posts in a while. We all survived chemo. I have one more h&p infusion left on January 25th. Then it's wait and see.
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jo6359-Thanks for checking in. Great to hear youare near the finish. Finding it hard to believe it's been close to a year since starting treatment.
Thanks for all the support ladies, its meant a lot to me. Hope 2019 is a new beginning for us all.
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Butterfly li-Just read your post from November and wanted to answer your question about chemopause. The same thing happened to me, mine stopped after the 2nd chemo treatment. I had just turned 44 when chemo started, and apparently chemo induced menopause is quite common when you are in your 40s. Doesn't mean you are officially in menopause though. I've heard from people who go 3 years and then have their period restart. Are you having hot flashes? I had them often during chemo, they went away for a few months after chemo, but returned when I started ovarian suppression. I suspect my estradiol levels came up a bit for that short time,so who knows what would have happened without the ovarian suppression. It varies a lot from person to person, but I've heard up to about age 50 on average you could see your estradiol levels rise above menopause levels (with or without experiencing a period).
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Happy New 2019 Ladies! We survived 2018 like champs and I pray 2019 is better and healthy for all of us!
Walden, me period disappeared after my second chemo in March and I have not had it come back yet. I'm turning 42 this month. A friend of mine same age as me told me she got hers back after about 8months. So you never know.
I've started lookig for a gestational surrogate. Stopping tamox and increasing my estrogen level if i get pregnant makes me uneasy.
Hugs to all ladies! Have amazing start of 2019!!!
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butterfly- I hope you find a gestational surrogate which meets your needs. Sometimes it's easy to forget so many of you women on these threads are of childbearing age. What a tough decision to have to make. Good luck to you.
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Hello everyone,
On the subject of early menopause, I think I am in that situation too. I didn't get any period since the one I got beginning March and I am 42. However twice I had this clear liquidy discharge looking like I broke my water. It is weird but no blood. I ask the radiation nurse and she told me this is probably pre menopause.
I decided to go bare head beginning January. New year, new me. My hair are still very short and very soft like infant hair but I don't care.
I have also decided that I didn't want to go back see any doctors. I won't do mammogram either. This is because I won't follow any treatment if I have cancer again. So I prefer not to know.
I am happy in my job and full of energy. I will always have my neuropathy in my feet and hands to remind me of what I went through but I can barely remember what I suffer through AC it is like the pain from delivery. It is all in the past but my body knows that it doesn't want to go through that again.
Have a great time!
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Lolotte - nice to see you. Bummer about your neuropathy. It never improved even with b supplements and glutathione? That's too bad.
Wouldn't you even have surgery though if you got it again? Localized recurrence would still be treatable with surgery ... & you know how on the stat charts, the single largest positive impact is on cutting it out? I think for pretty much all early stage ca, well over 50% of the survival is in finding it early and cutting it out. The benefits of chemo, rads, and hormonal therapies are these little tiny wedges that go on top of the surgical benefit. I understand the decision to not chemo again ... but otoh, maybe they'll have new chemo protocols soon. They keep finding and changing new & better things. Chemo now is nothing like what people experienced in the 80s and 90s. I keep thinking what we need to do is keep kicking this can to the future and hopefully a few years down the road the outlook will be even better
Anyway. Of course everyone needs to make their own decisions but I wanted to share some thinking from the other side.hugs
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Lolotte- I can easily see both sides. I 100% respect your decision and your right to do it the way you want to. Be happy and stay NED. I have 1 more tx of herceptin and perjeta. From there scans and bloodwork only. Best of luck to you.
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Lolotte- glad you are loving your job and feeling great!
Jo6359- i bet it feels great to be almost done with a whole year of infusions. I can't believe it's been almost a year that we have been in those infusion chairs. I am either finishing my year of Herceptin/perjeta this week or may get 1 more for a total of 18 herceptin treatments. Can't wait to get the port out. I will soon be meeting my Onc to discuss future tests etc. Has your onc mentioned Nerlynx for Her2+? I know that I will be having that conversation and am curious what your thoughts are on using it. The side effects of diarrhea sound scary. I am also stage 2 node positive so I know I fall into the category the drug is marketed to.
Everyone-I wish all of you a wonderful 2019. Glad to put 2018 behind us. I know I don't post too often anymore but I do log in to see how our February ladies are doing. I am always thinking of you, what we have all been through and how much support this group has given me. I am so grateful.
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rockcity- my onc has never mentioned Nerlynx. He informed me after my infusion on January 25th that's it. It will be scans only unless there's a reoccurrence. I will ask him about Nerlynx. I don't even know anything about Nerlynx. I guess I need to start doing some research. Are you going to do it?
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I don’t know yet if I am going to do Nerlynx. I have an oncology appt the first week of February. She had mentioned a year ago about the possibility of using nerlynx after my Herceptin was completed. I believe it can be started as late as 2 years after you finish Herceptin. I just started Arimidex a few weeks ago so I’m waiting to see how the side effects go and I plan to travel a bunch in the spring to finally get to watch my daughter play college softball so diarrhea is not a good option right now. If she convinces me to try it, I would wait until May. I missed most of of the games last year so I’m trying to make up for lost time! I do like the idea of continuing to attack the Her2+ but it could be some nasty side effects. I guess I will probably try. If it’s too horrible, I can always quit. Some people make it work. If you talk to your onc, please let me know what he suggests
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Rockcity- how did your body tolerate the herceptin? Did you have any serious diarrhea issues?
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Jo- Herceptin has been easy. Just an occasional runny nose. It might also be keeping my hair from growing at its previous rate. Of course instant menopause might be the culprit for that. Perjeta gave me diarrhea for a day or two when I had it with chemo. It’s been minimal since chemo finished. I did not start perjeta until chemo cycle 4 so I do not know if I will finish the last few perjeta cycles when Herceptin is finished. My onc will make the call in two weeks. Perjeta is only given with Herceptin so I don’t know.
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I've had hip pain for over a month so my dr sent me for an xray to check it out. It's kind of upsetting to read the requisition and see "hx of breast ca; r/o mets" The dr was reassuring; she thought it was way more likely to be either muscle, or bursitis, or arthritis but still.
Now I need to wait for results.0 -
I’m starting chemo February 1. I’m still in pain from surgery but it’s getting better. The nerve pain used to extend halfway down my arms. Now it’s just under my arms. I will have 12 doses of weekly Taxol and 1 year of Herceptin. I decided to use the Dignicap even though insurance women cover it
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I'm starting chemo February 1. I'm still in pain from surgery but it's getting better. The nerve pain used to extend halfway down my arms. Now it's just under my arms. I will have 12 doses of weekly Taxol and 1 year of Herceptin. I decided to use the Dignicap even though insurance won't cover it
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moth- hang in there. I know it’s scary waiting for those results. It’s most likely NOT cancer but the mind goes to scary places. I know my onc said any symptom that lasts over a month they check out just to be sure it’s okay. I had a bone scan a few months ago because of back and all over bone pain so I hear y
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Thx Rockcity. Yeah, so much of this cancer thing is about getting the right mindset and trying to find the balance in following up on things without panicking about them.
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Hello everyone. I’ve been off here for a while but thought I’d check back in.
I just had my ovaries and tubes taken out yesterday and I’m home recovering. I had been getting monthly Lupron shots for ovarian suppression so I could take an AI (instead of tamoxifen) It was a test run for a while to see if I could tolerate it. Other than joint pain it’s been ok so we decided to go ahead and take them out so I don’t have the biggest estrogen source still kicking.
Moth- I had the same chemo as you and I had a lot of bone pain/ joint after I was done with it even before the AI. I too had to go for a bone scan and that was all it was. I hope you have same results. It sucks to be in pain but it’s usually easier to know than to not know
On the lighter side. My hair is growing in nicely. If nicely means a giant mess of curly frizz. I have NO idea what to do with it (no product seems to be a match for it!) and I look a total fright but it still beats being bald! Can’t wait for it to be long enough to do a straightening treatment on it
I’ve been learning to just say “Thank you” when people compliment my short hair instead of launching into a speech about chemo
My eyebrows have returned to normal but my eyelashes came in full but stayed short. My eye doctor prescribed me some Latisse so I’ll see how that goes. One small silver lining is that my leg hair and underarm hair have not returned. They came back for about one month after I was done with rads but then stopped
My lymphadema is still here and I’m still seeing a therapist. It’s not bad but I want to keep it that way.
I still have neuropathy in my fingers and feet but it’s manageable.
One not so cool side effect is that I developed a gap in between my lower front teeth. I’m sure it is due to gum damage. Seeing my dentist in a week so I’ll see I guess.
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cbok- wishing you a speedy recovery from your surgery. I am 7 months post-chemo and I have a full head of hair. Like you my hair is growing at all directions. I plan on going to a salon on Saturday to try to do something with it. It's still better than having no hair. I continue to lose my eyelashes and my eyebrows. They will grow in for about a month and then they start falling out again. I didn't lose any nails but the breakage is horrible. I'm sorry that you're still experiencing bone / muscle pain. I was mostly pain-free through the whole process of chemo and h&p. I did take Claritin non-drowsy a few days before my infusion and a few days after. Occasionally I would get severe leg cramps during the middle of the night. Fortunately the cramps never lasted long. I have minimal neuropathy in both my right and left toes. That too has diminished. It sucks you have bone and muscle pain but you also have lymphedema and neuropathy. You have had a tough time. Moth had a very tough time with her chemo do to her white blood count and neutrophils being low.
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It's finally February again, so I figured I'd chime in, too!
Aside from some residual fatigue (and anxiety), I think I'm in pretty good shape, considering - we'll see what the doctor says next week in my six-month-post-treatment checkup. Had a mammogram last week, haven't heard anything back (ie, no call for additional images, etc.), so I'll get the results of that at my appointment next week. Also seeing yet another new MO, which will be the fourth in a year (ugh), I feel a bit like I'm being passed around like a hot potato. All of the aches and stiffness I had previously have gone away, though, and I feel mostly like myself again, aside from still getting run down more easily than I used to, and even that's improving every week.
I've got a full head of hair, about three inches or so, and it's coming back with exactly the same texture that my old hair had, no crazy chemo curls here, just the usual unruliness (it's always had a mind of its own). The colour is all wrong - it's several shades darker than it used to be, and my natural red highlights (the one thing I really loved about my hair) are gone, though my hair guy tells me that maybe it's just that this hair is all new and hasn't been in the sun much yet. There's also a ton more grey than there used to be - before, I had like racing stripes, my greys were coming in at my temples only, but now, they're kinda all over, makes me look older than 33. I still mourn my long hair, I miss it desperately all the time, even more so when I go out and see someone I've known for ages and they don't recognize me at all, I'm hoping to stay well so I can grow it out really long again, I just wish it would grow faster, since chemo, it grows so slowly.
My eyelashes keep shedding, though - I lost all of my eyebrows and eyelashes last summer for about six weeks, it was awful, and while my eyebrows are mostly back to normal now (one still looks a little sparse), my eyelashes have had two big sheds since they grew back, I keep finding eyelashes on my cheeks and my glasses (and they get in my eyes, ack), it's a little disheartening. Every time I manage to get a full set that looks halfway normal, most of them fall out again and then they're all uneven and patchy. I used to have long dark eyelashes, ever since I was little, but it's starting to feel like they're just gonna be patchy and falling out forever now. Anyone else here still having eyelash issues??
I do need to go back to work, but at this point, I'm no longer on medical leave, I'm fully unemployed - my contract expired in December and after my "performance issues" when I started treatment last year, I wasn't offered a renewal or new contract, so I have to start fresh somewhere new. Actively job-hunting, but deeply concerned about my ability to pull off a full 40-hour week (+commute, which tends to be an hour each way, regardless of location) right now. I do still get tired if I've had a busy day, it's not nearly as bad as it was (I haven't taken an afternoon nap in months!), and I worry that if I do find a new job soon, I may struggle to keep up (and keep the job!), but part-time isn't an option right now, I'm flat broke and struggling with the debt I've accumulated because of this diagnosis (I haven't had any income since my meagre medical EI ran out in July and my insurance company is still working hard to deny my STD claim), and it's not like my bills have gone away just because I can't pay them, so I need a full-time paycheck ASAP.
Mostly, I'm just trying to get back to normal, whatever that is now, I don't make a good patient and I'm so tired of still being treated oddly by the people in my life because I had a few rough months last year (seriously, there's more to me than one bad diagnosis, please don't treat me like that's all I am now!), and I know I'll feel better mentally when I get my life back into some sort of working order again.
And that's about it! I hope everyone else is feeling better these days and moving forward in good health.
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Anxietygirl- I continue to have issues with my eyelashes. They will grow in nice and thick and two days later half of them have disappeared. My hair grew in nice and thick but definitely unruly. Hopefully once my hair grows longer the weight of my hair will start to straighten it out. This has been an ongoing issue since chemo stopped. My eyebrows will fill in and they too will fall out. I didn't have the extreme fatigue you experienced . I was able to work throughout chemo and radiation . I did have a few days of sheer exhaustion but I was able to push through it . Mainly because I didn't really have a choice because I have six dogs and three cats. Once I was up everything was okay. I know of several women on these threads who experienced bone crushing fatigue . Good luck on your job hunt. Once you're doing a job you enjoy you might find you don't notice the fatigue much. An hour drive doesn't sound too much fun though. Keep us posted
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Hi ladies, hope everyone is having a good start to 2019.
I started looking for gestational surrogate in earnest and have had 3 consults with agencies to see what my options are. Would love to have my twin boys but also to be around for them. So decided on the surrogate option.
Assessing the damage from treatment at a high level this is the situation with me. I too have a full head of hair but my underarm hair did not really come back, maybe just a tiny bit on the non-surgery side - i'm not complaining. Hair on my legs is growing but really slow. My big toenails on both legs took a big hit from chemo - they are both black on top and kind of misshaped. the left one completely fell off some time back and what is there now, i don't even know if i can call it a nail. left left arm has a weird numb sensation from the surgery - never went away. i guess i need to resume PT. still, i'll take all of that as long as a i never have to deal with BC again. Taking tamox daily and (sorry for TMI) been having this stubborn discharge i can't get rid of - wonder if it's the tamoxifen. Anyone else experience that?
Rockcity, Jo - so exciting that you're done with infusions! Congrats you rock!
CBOK - you are brave deciding on and undergoing the ovary removal surgery. Hope recovery is quick! I may do that too sooner than later.
Hugs to you all my Feb ladies. I think about you all often!
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butterflylily- the best of luck in finding a gestational surrogate. You have been on a difficult journey. Hopefully things will start looking up once you find your gestational surrogate.
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Hey Moth, haven't heard back from you. You ok? I had a scare too. A second lump but turned out to be benign. I feel like the cancer has turned me into a cancercondriac. lol new word. But still it's smart to remain vigilant I think. Hope all is good.
Glad CBOK that yours was just drug related bone pain and not mets. What a journey this is.
I've had some non cancer people say to stop thinking the worst or the cancer will come back. These type of comments drive me crazy. Do they really think that. I know the power of the brain is strong but bad thoughts didn't cause my cancer and good ones are not going to cure it. Staying here with my feet on the ground and vigilant is my plan of action.
Hope you're all good.
I noticed a post from Penny. Are you still there? Penny this group is people who are a year out since their Feb 2018 chemo. It's worth joining a group or starting a february 2019 chemo group like we did. It was such a great help while going through the "stuff" you go through. For sure feel free to post here too if you like but we'll mostly be talking after chemo stuff now I'd imagine. Good luck to you.
Speaking of after chemo, anyone else on AI's. I'm on my third type as I have issues with my hands (trigger finger and bone pain) on them and OC keeps trying different brands. I get brakes in between drug trials and I love those but tomorrow I start my next batch of new drugs. Wish me luck.
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indiahood- you are so right. Being able to communicate on this thread and share our stories and learn from one another as we went through chemo was fantastic. Chemo isn't fantastic but the support here is fantastic. We all have been through so much during this past year. Loss of hair, unexpected blisters or sores, horrible metallic taste in our mouth, stomach issues and foremost the Big D and so many other things.
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Hey guys, I'm just popping in to say hello. I don't have the results of my hip xray yet because I've been too busy to go to the dr office. I am sort of assuming that it's ok since they didn't call me in, but I will go follow up as my primary doc is on mat leave so it's also possible it's just sitting in folder waiting for her locum to start in a couple weeks.
I have midterms this week and next and I'm super swamped. But I will go in and get it for sure in the next couple weeks. My pain has been a lot better so that's a good sign.I do have my routine diagnostic mammogram scheduled towards the end of the month & seeing my MO a bit after that.
indahood - crap, a lump must have been so scary. Glad it all turned out to be nothing.0 -
Just had my six-month-post-treatment check-up (that's a mouthful) - mammogram was all clear (phew!), physical exam was all clear, everything looks good and I don't have any other concerns at the moment (aside from my finances, ugh), so on to the usual spate of regular exams every few months and hoping for the best. Hoping all of you lovely ladies get a clean bill of health in your coming appointments, too!
New MO (my fourth in a year, ugh), she's... well, she's better than the last one (which isn't really saying much), but how is it that they're all like robots?? I mean, I had one MO last year who interacted with me like she was a real human, but the others, including this new one, are all cold and detached and behave like their patients are nothing more than irritating pieces of busted machinery that they don't want to deal with. I can see how they need to keep a certain distance (too much emotional investment would be difficult in a medical field where so many people are desperately ill), but c'mon, patients are living breathing people with feelings and concerns, it would be nice to be treated as such, ya know??
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Anxietygirl- congratulations. It's fantastic news you are six months post treatment and everything it's clear. What a relief. I have an excellent MO. I found him to be professional, kind and compassionate. I finished all my treatments at the end of January so my next appointment isn't for three months. Hopefully my labs will continue to be good.
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Hello ladies. I haven't been participating in our thread for quite a while but do pop in to see all of your updates. I continue to be encouraged and hopeful by reading your posts.
On my end, the past week has been crazy but with good a outcome. Last Friday I had a colonoscopy...the prep was horrible...had to get poked three times before an IV could be successfully run. Procedure went pretty good and best of all it was normal. Then on Monday I had my first follow up mammogram. Had to wait for 40 minutes before going in so my anxiety had a nice chance to simmer and work itself up unfortunately. Then, to my disappointment, no results of any type could be given right away...don't know why I thought the torture of knowing or not knowing would be over by the end of the appointment...instead the images had to go to the radiologist who would then send a report to my GP. At that point I had a total melt down and broke down crying. : (
Luckily my GP is awesome and called me the next afternoon saying it was all good! Yahoo!!!
I've been on Tamoxifen since last September and have to admit it's quite uneventful for me in terms of side effects. I have a full head of chemo curls that are challenging to manage but I am nevertheless grateful for...got my first haircut and color in November. I think I'll let it grow out now.
I have a follow up with my oncologist on March 4th. I imagine it will be to mostly see how I'm tolerating the tamoxifen.
On a personal note, my daughter is going to the Canada Winter Games in two weeks in Alberta to compete in her sport. We will go watch and support her and are looking forward to this little trip!
Take care everyone and thank you again for all of your words that to this day continue to be a source of comfort.
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