Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Chemo starting December 2018

1171819202123»

Comments

  • BeckyJL
    BeckyJL Member Posts: 81

    Hi all, sorry I've been absent. Summer living and fun take me away from my computer. Seems like everyone is making positive progress. Loved reading the good news. For an update from the other side of chemo and radiation - hair - yes, slowly but surely. Eyelashes - getting there. Nails - halfway to growing out all the chemo effects. Still have to keep them as short as possible or they split, but finger and toe neuropathy almost down to zero. Eyebrows - not seeing much growth there. Fatigue - mostly gone. Just don't know what normal is anymore. I'm more active, but now, apparently, I'm a napper. I never was before cancer. SEs from the letrazole (estrogen blocker) minimal. A lot of peach fuzz on my face - I'm going to try threading here in another week or so or whenever I get around to it.

    One thing I am having trouble with, if you all don't mind my asking, is sex. My libido is not back and actual intercourse is uncomfortable even with lots of lube (sorry if this is tmi). Talked to my primary care physician at my yearly physical and he was sympathetic but not that helpful. Says it's caused by age and lack of estrogen now. Anyone else out there in a similar boat? Any solutions or suggestions? I gotta think if this happened to men there'd be a hundred different solutions, lol.


  • anx789
    anx789 Member Posts: 226

    Hello everyone! I hope everyone is doing well and enjoying summer.

    The other day, a lady in the elevator told me that she also wore a head scarf for awhile long time ago. It made me feel happy and emotional.

    An update after 14 weeks PFC, all SE are gone except for one, not even sure if its chemo related - I have swelling on my left eyebrow area - there is no redness, no itchiness, no pain, just swelling. Anybody noticed any swelling when you lost your eyebrow? My MO doesn't thinks its chemo related and primary doctor advised me to check with my Opthalmologist. Oh well...My hair is about 1/2 inch long right now and you can still see my scalp. Its growing but its very slow and thin. It seems like I’m growing beard and sideburns but no sign of growth of my eyebrow and eyelashes yet. My sleeping habit is not as good as I want too, I get up few times at night and can't go back to deep sleep.

    Becky, talking about libido, mine started to diminish after my hysterectomy few years back. After chemo, its totally gone. I think chemo caused the skin/membranes down there to be thinner and dry that causes discomfort and pain. I read that with the hormone therapy it might get worst. I feel sorry for my husband but nothing I can do this time, I have no desire whatsoever.

    Take care everybody!

  • ipenelope
    ipenelope Member Posts: 233

    Anxious- I did not have swelling so I hope yours goes away quickly!! I sadly also am dealing with too much facial hair where it's not wanted!! My eye lashes just came back like crazy one day and thankfully now are almost back to normal though eyebrows are still very thin. My hair is still mostly peach fuzz though it's gotten thicker and longer as it's starting to lay flat instead of sticking up like i was playing with a light socket.

    I hope all you ladies are doing good dealing wth the sad SE from chemo and continuing to kick cancer's ass!!🥊🥊

    ~Katie💗

  • Flower216
    Flower216 Member Posts: 87

    ipenelope.. My eyelashes are back to "normal" but my brows are very thin and non-existent in some spots. I saw my dermatologist yesterday who said its 50/50 if they will grow in more. Luckily I can "fake" my eyebrows. I do wish my hair would grow a little faster...and I think the little hairs I do have are starting to curl. This is a crazy trip we are all on!!!!!!!

  • ipenelope
    ipenelope Member Posts: 233

    Flower- lol unless i want much darker then my peach fuzz and natural hair, very blonde, I don't think faking my brows will help. Ive noticed some of my longer hairs are curving too.. I'm actually looking forward to it getting longer and seeing the chemo curls.

    ~Katie💗

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    hi ipenelope, flower, anxious, Becky.

    Good to hear from you. Seems everyone is moving on from chemo and recovering nicely. My hair growth was looking a bit monk-like. Was driving a few of my guy friends crazy with the odd long curls sticking out haphazardly, so I shaved my head. Not with razor, with clippers. And within a week, my hair has come in fuller and original color. Though, I’m hoping to still grow chemo curls since I’ve always had straight hair.

    Fatigue is getting slightly better, though, now joint and hip pain becoming increasingly evident. Could be from prednisone. Yes, still on it! Just had CT scan last week. Will meet with lung specialist this coming week to see what is the next step.

    Not a fan of tamoxifen. The hot flashes are so extreme. Plus other SE’s. Hopefully body will get used to tamox. With me being high estrogen and progesterone %, it’s supposed to help against recurrence. So, I should really stick with it.

    It’s been 6 weeks PFC, can’t say I’ve returned back to normal life yet. Really miss going to body combat class and regular fitness routines.

    Becky, regarding libido. Wish I could offer advise, but fatigue has been very extreme. Just thinking about sex is already exhausting, makes me want to take a nap.

    Hope you’re all doing well. Always so nice to hear from you!

  • anx789
    anx789 Member Posts: 226

    Katie, I have a peach fuzz side burn. I don’t like what I see in the mirror, I have swollen eyebrow and eyelids, black side burn and very thin hair.

    Angie, i think the swelling on my eyebrow and my eyelid is from Tamoxifen ( hopefully) Do you have this SE? I read that swelling (ankle/foot) is a SE of Tamoxifen but I’m not finding any about eye swelling. I check with my Opthalmologist, he said there’s nothing to be concern at this time but it bothers me that its not getting better. I am also losing weight which worries me a little because I’m not trying, I just eat healthy now. But then again this paranoia/ anxiety is a SE of Tamoxifen.

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Anxious, I’ve read that there are loads of SE’s associated with tamoxifen, one of which is swelling around the eye area, including eyelids and eye brows. I’ve read weight loss is also a SE. Have been on tamox for a month now. Getting used to most of the SE’s, but hoping that they eventually lessen. One side effect I can do without is the level of anxiety that I am experiencing. Lately, been having random panic attacks. Not fun whatsoever. Think I’ll ask family doctor for a prescription to help.

    Trying to get used to this new me. Some days are hard. Eventually it will become easier, so I’ve been told. It’s not easy with everything we’ve been through. I know there are brighter days ahead. Keeping a positive attitude can make a difference.

    Hang in there, Anxious. We can do this!


  • kber
    kber Member Posts: 243

    Just stopping in to say hi. My BMX is over and I'm recovering pretty well. I'm spending a lot of time with my plastic surgeon. I can tell if he's a total perfectionist or just likes looking at my boobs. They ain't much to look at right now (literally and figuratively) though, so I'm going to go with perfectionist.

    I start radiation in 2 weeks. I had my simulation this week. Being a holiday weekend, they don't expect to have the plans fully done right away. That's fine. I'm treating the intervening 2 weeks as a mini-treatment vacation. I'm feeling fairly recovered from surgery and chemo and actively enjoying feeling good. I suppose radiation will have it's own special awfulness, but I'm hoping it won't be quite as bad. Or at least, it will be shorter. Looks like I'll have 25 sessions over 5 weeks. Can of corn compared to chemo, right?

    I won't be doing tamox or similar as I was triple negative so it wouldn't help. Sending good vibes to you ladies on it - I hope the SEs subside and become manageable!

    If you're in the states, enjoy the upcoming holiday! Peace to all.

  • mcbaker
    mcbaker Member Posts: 1,787

    My prayers for you. I am grateful for Herceptin, despite the fact that the manufacturer is price-gouging the insurance companies.

    When they initially gave me the choice of mastectomy or lumpectomy, I chose mastectomy, because even thinking about traveling 100 miles a day five days a week for five weeks for radiation made me tired. Depends on availability. They later told me that the DCIS was so extensive that lumpectomy was off the table.

  • lilliangish
    lilliangish Member Posts: 54

    Hello friends! Im so glad to “see” you all.

    I finished radiation the first week in April and my skin is finally healed. Kber, I found radiation very easy, but everyone is different. A little tired and some crispy skin. Compared to chemo it was a walk in the park.

    My feet are still numb from chemo and my hair is coming back much darker than it was before. And curly. Never had curly hair before. Interesting to hear your story Angie...maybe I’ll cut it back and see if the color isn’t more like the original. My doctor did say to give it a year.

    I’ve been taking Femara for two months now and haven’t felt much different yet. However that med or the antidepressant I’m taking is resulting in me being very drowsy during the day. I sleep at night, all night, and I’m grateful. The AD also stops hot flashes.

    They gave me the choice of tamoxifen or an AI. I chose the AI because it’s slightly more effective against recurrences for postmenopausal women, but the downside is bone loss. Ugh. I may not be able to take it for a really long time. I asked my MO about zometa infusions and he said that would help with bone loss and maybe reduce recurrence in the bones...but then no follow up. I need a new MO.

    Peace and health to you all. I don’t know about you, but I feel like I went through a war

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    hello ladies, how is everyone doing?

    Great to hear from you, Lillian, Mary, and kber.

    kber, hope radiation treatments weren't too harsh on you. Lillian, I'm trying to adjust to tamoxifen, but finding it very challenging. Prednisone was brutal, but I'm going to say tamoxifen is also torture. Could be all the chemo+prednisone+tamoxifen adding up. I was quite healthy pre-BC. Hardly even took Tylenol for headaches. And then suddenly for the past 10 months, my body is getting beat up left and right with all kinds of drugs and poison.

    Facebook reminded me what I looked like exactly 3 yrs ago. Played a 27 hole golf tournament, and shot -3! (Would love to see that again!) I'm including a photo from then and today to give comparison. I know we can't go backwards, but wow, BC has really aged me. Though, I'm happy to start growing hair again, if only my right eyebrow would come in. Hope everyone is recovering well.

    image

    image


  • kber
    kber Member Posts: 243

    It's been a touch ride, for sure! I'm hoping that, post radiation, I can get into better shape, even if I can't rewind the clock completely.

    So far radiation has been pretty easy, but I've just started. I suppose the SEs tend to kick in after 2 or 3 weeks. But at least it will be quick.

    I see hair and eyebrows in your recent picture :). You are beautiful!

  • anx789
    anx789 Member Posts: 226

    Angie, you look beautiful. I feel the same way. The very short thin hair makes us look different, try to put an eyebrow and a wig, you’ll realized nothing changed!

    Kber, wishing you well on your radiation treatment.

    McBaker & Lillian, nice to hear from you.

    Becky, how’s your hair growing? 4 months PFC, my hair is not even 1 inch long and very thin.

    Jpenelope, how are you doing

  • Flower216
    Flower216 Member Posts: 87

    Hi Ladies!! Hope everyone is doing well!!

    Angie....you look so pretty!

    kber….hope you continue having an easy time with rads!

    So, I am 5 months PFC, my hair may be almost an inch long (I have a lot of hair), but its 50 shades of gray (my hair was dark brown with scattered grays throughout) and I have tiny, tight curls (never had a curl in my life). I really hope I get more comfortable with this soon....it just is not me!!!!!!! My eyebrows did not fully grow in, and my dermatologist said at this point there is a good chance that it may not grow more, but I use my eyebrow powder and color it in. I see my MO next week and have a whole list of questions for him!

    Be well!!!!


  • ipenelope
    ipenelope Member Posts: 233

    Angie- your hair looks wonderful!! I would love to be able to golf that good! What side effects from Tamoxifen are you having?? I'm on it to so curious what other ladies are experiencing with it.

    Kber- you have some peach fuzz coming in!! I hope your radiation continues to go well and your side effects aren't too bad!!

    Anxious- sorry your hair is still not too long and thin!! Not sure how warm you are out in CA but i know here in MN the weather has been really hot so the short hair is good!!

    Flower- sounds like you have a bad case of chemo curls going on!! Hopefully as they grow out they will loosen up alot!!

    Things here are good. I have a Relay for Life event here next week that I will be speaking at as a survivor and I don't feel I'm at that point yet!! I'm trying to get back into my normal routine but it's challenging. I currently have hair but it's very short but thick which is ok as my hair used to be extremely thin and fine. I'll try and take a new one and update my picture on here.

    I hope all you ladies, and guy, are having agood week and keep kicking cancer's ass!!!🥊🥊🥊

    ~Katie💗

  • Flower216
    Flower216 Member Posts: 87

    ipenelope-congrats! I am so impressed that you will be a speaker at Relay!! Please let us know how it goes!! I do understand about “ normal routine". For me, I try to take baby steps, but my feelings and attitude changes daily. I guess it doesn't help having so many dr appts (catching up with gyno, gastro and MO next week) before testing starts in oct!

    So.. this is the back of my curly-Q"s

    image

  • Flower216
    Flower216 Member Posts: 87

    Will II wind up like this?????

    image


  • ipenelope
    ipenelope Member Posts: 233

    Flower- I love your curls!! I think they look great and your hair color doesn't look too gray!!

  • anx789
    anx789 Member Posts: 226

    Flower, love the hair! My hair is not even half of that. Do you put any oil or take some vitamins.image

    Jpenelope, it’s pretty hot here in CA this past few day, it forced me to feel comfortable with my short hair. I never had a pixie cut before, I actually like it. How I wish it’s a little thicker though. Good luck on your speaking engagement, keep us posted!

  • Flower216
    Flower216 Member Posts: 87

    Anxious...your hair looks great!!! I am trying to feel comfortable going out with my new style...but its not easy...I still throw a baseball hat on! My MO gave me the okay to take biotin (he wasn't sure if it really helps growth) BUT, my dermo said to stop it immediately. He said new findings show that Bitoin changes lab results, so I listened to his advise.


    ipenelope..thank you! I think in different lighting, you the grays really do show up more!

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Flower, love your curly Q’s and wow, so much hair. I’m so envious.

    Anxious, love your hair! Looks like a very cute pixie!

    Wish mine would come in faster, and thicker, but only 9 weeks PFC. Cant’t expect too much right now.

    Ipenelope, 🍀 speaking engagement at Relay for Life. Keep us posted!