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...

Starting Chemo December 2019

Options
11315171819

Comments

  • Bejeweled
    Bejeweled Member Posts: 22
    Options

    Hi everyone,

    Just popped in to say hi and I hope everyone is doing well. I finished -#16 today and am officially done with “chemo.” It’s a little anticlimactic since I will literally be back next week to start another 17 rounds of Herceptin. But I will take what I can get!

    I feel like I coasted in in fumes and collapsed over the finish line. Between chemo and covid, I’m spent. I didn’t ring a bell. I didn't do anything really but just sit there alone with my ice, and then packed up and walked right on out. I know I was being a buzzkill but I legit didn’t have any more energy or motivation in that moment.

    I’m calling about when to start radiation tomorrow as well. Moving forward.

  • maryjv
    maryjv Member Posts: 269
    Options

    congrats bejeweled! Glad u made it through chemo, one foot in front of the other. Thinking about you all and hoping you are staying safe during this most uncertain time. Keeping you in my thoughts and prayers 🙏❤️ I am recovering from the double mastectomy pain is subsiding but def have cording in the right arm and no PT at this time.

  • jrnj
    jrnj Member Posts: 407
    Options

    Katej128, No, I'm on the lower does 7 week plan. Just finished week 4. I have a small lump in my throat, sometimes extra tired, and just starting to get pretty red under arm with some minor pains.

    Bejeweled, Congrats!!! I know we didn't have the same chemo, but 6 weeks after finishing, I feel pretty much back to my old self from the neck up, my brain is in tact, chemo fog gone, taste buds still a little off. Body aches and pains are actually worse, but hopefully that will get better and the steroids are making me feel great, lol.

    Maryjv, some people say the pain is not that bad. I was in a lot of pain for several weeks and was afraid I would be one of those post mastectomy pain syndrome people. but after about 5 weeks it started to feel much better and I painted my daughters room before chemo started. My arm movement wasn't that bad, most of my pain was in my chest, I think where he stitched the Alloderm to my muscle to hold the implants, which were later removed due to infection. But the pain started to subside the week before he removed the implants, so relief was not only due to TE removal. Hope you feel better soon!

  • Eigna
    Eigna Member Posts: 256
    Options

    Hello all, I made it. I completed radiation treatments. Cannot believe it. So many emotions.

  • maryjv
    maryjv Member Posts: 269
    Options

    Congrats Eigna!!! Surgery, chemo and radiation!!! Such a journey and I agree so many emotions for sure! Glad I had you ladies to vent to during chemo and I’m sure for the years to follow!! 🙏❤️

    JRNJ- you are so right! About 5 weeks out and finally feel much better, no longer need pain meds and more movement in cancer side arm!!! Yay, hoping you are all doing well and staying safe

  • Eigna
    Eigna Member Posts: 256
    Options

    Thanks Maryjv ! How are you doing

  • maryjv
    maryjv Member Posts: 269
    Options

    I am well! Home on STD until end of May!!! Really enjoying my time at home with my 8 yr old daughter! How are you doing??? Please stay safe!! I go for my follow up visits in two weeks

  • halezma
    halezma Member Posts: 13
    Options

    Well ladies yesterday I finished my 12th Taxol and I'm officially done with chemo. I have an appointment with my radiation oncologist on 27th to go over final details and schedule the mapping and all of that good stuff. My oncologist did say I could get my port removed before radiation if my breast surgeon has time before rads. Has anyone had their port removed yet? I've had issues with my port with getting blood return, the nurses would flush with saline, get a quick return then it would stop. Yesterday it took 3 nurses and 45 minutes to get one vial of blood.

  • maryjv
    maryjv Member Posts: 269
    Options

    Congrats!!!! So happy for you!! I still have my right side port (gonna ask my SO next week about removal plans) but I did have my left side port removed when it became infected. Very easy recovery with no pain! Good luck with radiation and please keep us updated! Missing you all

  • margo53
    margo53 Member Posts: 131
    Options

    congrats to all who have recently finished chemo ! i still have my Portland will keep it until the fall... kinda hate to let it go, I guess fear of recurrence... Mine has been difficult to get blood from as well.
    I started on Letrazole last week... so far, ok, but really too early to tell... weight gain is a big SE.... ugh!!😩
    My best friend of 20+ years was just diagnosed with IDC, HER2 Positive.... twice the size as mine and very aggressive. So sad! But she is very strong emotionally and very healthy otherwise.
    Hope everyone is well and staying safe.

  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    Hi Ladies,

    Thinking of you all and what a wonderful support you all had been during chemo. Congrats to all those that finished recently. How's everyone's hair? Mine is growing back in, but it's so weird...wavy and more coarse and unruly. No idea how to style it. It came in very gray, so I broke down and dyed it a few weeks ago at the 2 1/2 month post chemo mark. I used a Natural Hair color, Naturtint, without all the harsh chemicals. It was ok, but doesn't have the shine that my former hair colors had. Oh well, at least not many people are seeing it right now.

    I've been battling depression ever since the chemo put me into menopause. And with that, the cancer, all the treatments and the pandemic, my Dr said it was the Perfect Storm for me. So I am trying Effexor for the depression, but not much relief even after 3 weeks. It has helped the hot flashes quite a bit though. I started Arimidex last week.

    How's everyone else holding up?


  • jrnj
    jrnj Member Posts: 407
    Options

    Congratulations hazlema!!! Radiation is so much easier than chemo. I actually was glad to get out of the house.

    Maryjv, yes the positive in this mess is that I have been bonding with my 12 yo daughter more. She likes to cook (I hate cooking lol) and we planted flowers together, something I've never done before.

    Eigna, Congrats!!

    Margo, Sorry to hear about your friend. I have a close friend battling ovarian.

    Havefaith, This is in addition to what I said on the radiation forum. I've been playing with different natural hair dyes and colors and it's pretty much a mess right now. Too dark, too light, etc.... Good time to experiment though, when I don't have to go anywhere, lol. It doesn't seem to be affecting hair loss though. It actually seems to make it stronger. I hope you feel better.

  • maryjv
    maryjv Member Posts: 269
    Options

    hello ladies! Getting ready to go back to work next week-no! Will hopefully have reconstruction in July. Have faith I am so sorry you feeling down! I am also in menopause from chemo. I am having some fears and anxiety from dizziness, vision changes, high BP and pulse and ENT issues i have recently developed. I saw ENT today, will have brain MRI on wed and revisit MO on Friday. I pray that this is from chemo and weaning off of gabapentin and not something more sinister. I just hate that I am always going to have that thought in the back of my mind everytimeI feel any symptom. Thank you guys for letting me vent and I pray that you are all doing well!❤️
  • Eigna
    Eigna Member Posts: 256
    Options

    Hello everyone! Sorry I haven't been on this site for a while, since I finished radiation treatments a month ago. Very busy with the kids, virtual classes, homework, cooking etc.
    I started tamoxifen a couple of weeks ago. So far so good but it's still early.
    I decided to go back to work end of June. I think I'm ready to go back but I'm scared at the same time. I don't know how I'm going to face my colleagues, if I should wear a wig or ditch it. Maryjv do you have fears going back to work
    My hair is growing but it is too short (1 inch about) to go without the wig.
    I think I'm also worried about this pandemic and if we as cancer patients, are more prone to catching the virus. I am wondering if I am doing the right decision going back to work under these new difficult conditions. I asked a few doctors about my concerns and they did not tell me not to go back. But I am still worried. Do you girls feel the same way ? My kids got use to me at home and they don't want me to go back....

    Have faith -hope you feel better

    Glad to hear from all you and catch up with everyone. Big hugs to everyone!!!! stay safe!

  • maryjv
    maryjv Member Posts: 269
    Options

    Hello eigna!! I am actually back at work-started last week and feeling good! Have some aches and pains but think it’s from chemo and chemopause! Feels good being at work but def worried of exposure-using a n95 mask and face shield when I have to see patients! Other than that just trying to minimize my exposure!! Hope you feel better but the anxiety is def there-I just try and let it go and practice safe measures

  • jrnj
    jrnj Member Posts: 407
    Options

    Hi gang, I went back to work today. I am bummed, but at least I am working from home. I had a Lupron shot two weeks ago and feel really lousy and haven't started my Aromosin yet. I have major aches and pains all over my body, headaches, can't sleep and a weird lump in my throat which is really starting to mess with my head. Now I think I have thyroid cancer. Mary, did you have your brain mri? Did you have throat issues too? Stay safe!!!

  • maryjv
    maryjv Member Posts: 269
    Options

    JRNJ-yes had brain MRI and thankfully everything ok...also have some throat issues...went to see ENT but they didn’t find anything wrong. My MO is going to check my thyroid level this month but sometimes i feel its swollen, hurts, idk! Also having knee and back pain! Feel like it’s either bone loss from chemo/ menopause or arthritis-gonna tell my MO as well!! We can get through this!!! Hope you are enjoying being back at work-glad it’s from home!!

  • jrnj
    jrnj Member Posts: 407
    Options

    Mary, So glad your MRI came up clean!!!! Sounds like we have the same symptoms. Maybe we just need more time for our body's to heal from what they've been through. Keep us updated.

  • Eigna
    Eigna Member Posts: 256
    Options

    Hello gang! Went back to work last Tuesday 😊! It felt good to go back. Kids finished school so it’s not that hard keeping up with the routine.
    I wanted to ask you guys something. After finishing treatments end of April I had a blood test and MO said that my results were normal. However I went to check myself online a few days ago and my MPV and lymphocytes are a bit low? Do you have something similar? And if so did your MO explain why? Just wondering. I will ask my MO when I see him. Also whare you next follow ups?

  • margo53
    margo53 Member Posts: 131
    Options

    Hi Eigna.... so glad you are getting settled back in at work!

    Several part of my blood work was off when I was checked a month out of chemo (March).....my MO said that was ok for just coming off chemo. My next follow up was in June and all was good....so now I don’t go back u til December....yikes, that seems like a long time away..... I have my first mammogram in late September.....ouch! My surgical breast is very lumpy ( scar tissue).... MO checked it and said it felt ok.... I am wondering why I can’t skip the mammogram and just have an ultrasound.....insurance I’m sure.
    On another note, I found a supplement what is supposed to help prevent recurrence......called DIM.....it’s an estrogen balancer.....I showed it to my MO and he googled it real quick and said he wanted to research it more but it was fine to take , just by the little he read on google.
    i am still having a lot of neuropathy in my feet.... taking Gabapentin....MO said it could take a while to go away....ughh! It’s a pain...

    How is everyone doing that’s on AI? I am on Letrazole and so far SE are not too bad.

    Hope all are well and safe!

  • Eigna
    Eigna Member Posts: 256
    Options

    Hello everyone How’s everyone doing? Like I said in my last post I started work in June. I’m happy to be back at work.

    Im posting cuz I’m worried a bit 🙄 and i need to exchange ideas with you girls. I have some kind of tenderness on radiated breast But the tenderness is more localized in one part. I don’t feel any lump but when I touch it it’s tender and it hurts a bit. Do you have this type of feeling? Could this be recurrence? So soon? I’m seeing my doctor end of the month but till then my mind wonders far.

    Also I’m starting to feel a bit depressed with this pandemic and from the looks of it it will be like this for a few years. So depressed I cannot travel with my family and make memories. I feel like I’m wasting my precious time. There I said it. Hope to hear from all of you soon.

  • margo53
    margo53 Member Posts: 131
    Options

    Hi Eigna!

    Good to see your post!

    I am having similar pain in my radiated breast...

    Sometimes I don’t notice it at all, but if I poke around I find tender spots....I saw my radiation onc a few weeks ago for my 3 month post radiation follow up.. She said this was perfectly normal and she did a full exam with heavy poking....lol......she called it fat necrosis, meaning it’s just fatty tissue that absorbed radiation.... she said to continue putting on my Eucerin once a day but of course that has nothing to do with lumps. Maybe this will ease your mind a little until you see your doctor.....I see her again in a year.

    I too worry about recurrence esp since there are no scans....just blood work that only acts as a red flags I guess....my onc told me if I have any Symptom that lasts two weeks to come in and then they do a scan. I have my first mammogram scheduled for the end of September....ouch! I’m dreading it cuz I m sure it will be painful, but necessary.....

    Are you taking an AI? I take Letrazole....occasional hot flashes is all I have noticed as far as SE go...are you on an antidepressant? I have been on Wellbutrin for years For what seems to be a continuous low level depression...it has really helped me to feel normal, whatever normal is, lol.

    Take care



  • Eigna
    Eigna Member Posts: 256
    Options

    Oh Margo ! Thank you for replying! I feel a bit better with your reply! It's exactly how you describe it. When you poke it feels tender. Question: are your pores slightly bigger compared to the other breast? End of August is my appointment with my breast surgeon. She will most probably ask me to do a mammogram in September/October I will let you know.

    I don't take anything for depression. I am not diagnosed with depression. But still I feel sometimes that our lives have been put on standby and I don't know how long I have to live!!!

    Im taking tamoxifen since I was pre menopausal So far so good.

    Thanks again for replying

  • Eigna
    Eigna Member Posts: 256
    Options

    Hey Margo ..how’s your hair? Mine is about 2- 3 inches long I wore my wig to work. I find it’s still short to go without it.

  • margo53
    margo53 Member Posts: 131
    Options

    Hi Eigna,

    I'm happy to help in any way....we are still in this together.... yes my pores are bigger on radiated breast....I had to look! I had not even noticed .... the big pores are below the areola. What causes that? I have none on the other breast...

    My hair is just about an inch long.... it will lay down in the back, but is all over the place on top.... if I am going somewhere., I spike it with gel.... I like it, might even keep it short like this.....it's so easy to take care of! I have to go to a funeral tomorrow and am undecided about wearing my wig or not. Oh and my leg hair has returned.....I was hoping it would not, lol

  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    Hi Lovely ladies, I could not find any of my forum favorites that I subscribed to on my phone and logged on via my desktop and they all came up.

    Boy, seeing all your posts sure brightened my day. It was so comforting to have you all there during chemo and now to still be in touch and get to compare experiences continues to be comforting.

    I am still struggling with depression and anxiety, off Effexor and back to Wellbutrin and now Lexapro. I am on low doses of each. Things have improved a little bit, but I am still having a hard time. I am sure the menopause is contributing to this. Ughhhhh...I want me Estrogen back...lol. I've been working with a good team of Drs (Psychiatrist, Therapist, Naturopath, Accupuncurist, etc). The Anastrazole has caused bad joint and muscle pain. Anyone else on an AI dealing with this? I'm on a little drug holiday from it to see if my body resets when I go back on. I just got some DIM and am going to start that in the meantime

    Lately, I've also been having a lot of anxiety about a recurrence. I know this is not healthy to worry about that. Has anyone else been experiencing that? This is such a crazy time with the Pandemic and my hubby and I both lost our jobs due to it, so more added stress.

    When do we move to a time when we won't be thinking about BC and everything we went through so much? I am sure if the world had remained normal, maybe this wouldn't feel like such a BIG change for us. But as I am sure it has been for everyone, it has been so challenging to get back to normal...the normal we all longed to return to after chemo. How is everyone handling all this?

    Oh, as far as the hair goes, I have a lot of new growth, but omg...it is so poofy and frizzy. It literally poofs straight up...I look like a poodle. I have no idea what to do with it anymore. Lots of hats and headbands for now.

    Miss you all. Sending air hugs!

    Elise

  • jrnj
    jrnj Member Posts: 407
    Options

    Havefaithtoday, I'm right there with you as usual on all of it. Except I'm lucky to have a State job and be able to work from home and my husband is also working from home. I actually didn't mind quarantine, got a lot done in my house, and have severe anxiety now coming out of it. Kids are playing soccer and marching band, but sit around the rest of the time doing nothing. I want them to go back to school, husband doesn't. I'm having a really hard time on lupron and AIs. Was on Aromosin and lupron for 6 weeks, took a 2 week break and started Arimidex last week. I'm in a lot of pain and headache every day, and can't sleep even with a sleeping pill. Did you need ovarian suppression? I'm getting my ovaries out 8/25, I think. Now I'm worried about DIEP and PS won't call me back. My hair is also 2 to 3 inches long and really curly. Driving me crazy. Looks worse now than 2 months ago. What is DIM? I'm trying allergy medicine. I took some Allegra on Saturday and it seemed to help, or it may have been the wine!! lol. I'm glad you have a good team. I don't have any of that. And of course fear of reoccurance. I'm afraid I can't handle AIs, but can't quit and risk reoccurance.


  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    JRNJ, sounds like we are not alone with all this. It's a tough journey, that's for sure. I had a hysterectomy 13 years ago and they were able to leave one ovary in. Up until I finished chemo I was not in Menopause, but since then I have been. My MO said I would moat likely stay in Menopause, and said I could do an AI instead of Tamoxifen if I had my Estrogen tested every month to be sure I didn't come out of Menopause. Well sure enough, I've stayed in menopause. I'm sure the Lupron along with the AI is making all the side effects worse. Maybe after you're off the Lupron the Arimidex will be more tolerable. Lupron is hard, I had to do it for a while when my Endometriosis was so bad.

    My MO said if I still have a lot of pain when I go back on Anastrazole (Arimidex), she would switch me to Exemestane which is supposed to have less joint pain, but who knows (sounds like that's what you switched from).

    DIM is a natural estrogen metabolizer/Aromatase Inhibitor and so are a few other things. I'm guessing they don't work as effectively as AI's. But, when I go back on the AI, if I'm absolutely miserable, then I will go back to the natural ones. But I promised myself I'd give the AI's a chance. I hate the anxiety it causes not being on them. It's a hard choice either way.

    Also, do you take Curcumin? That helps with the joint pain. I've been taking it for a long time.

    Good luck with the surgery next week.



  • jrnj
    jrnj Member Posts: 407
    Options

    Havefaith, no we're not alone. We'll get through this one way or another. Yes, was on Exemestane first. My MO said most people have less side effects on it, so from what I read everyone is different. It might be better for you. I'm finding the Arimidex slightly better, but I'm still miserable. I think I am allergic to both of them. I get bad headaches, congestion, whole body swollen and in pain. My surgery might get cancelled if it will conflict with DIEP, I have a telemed call with PS tomorrow morning. I refuse to go back on Lupron. I'd like to take my chances. Chemo put me into menopause too. I'm thinking if I can't tolerate AIs, I'll try Tamoxifen. I'm just afraid because I heard it might not work as well for ILC. I'm still experimenting with antihistimines. I have just about every supplement I heard about on these forums now, lol, glucosamine, magnesium, zinc, krill oil, and the Tumeric comes in a peach gummy, I have to hold back from eating them like candy, lol. But nothing helps the headaches and insomnia, even with my sleeping pill.

  • Eigna
    Eigna Member Posts: 256
    Options

    Havefaith - I hear you. We are all here for each other. Whenever you feel letting all out do it here. Fear of recurence? I’m living it right now. I came back home from work today and as I was undressing I noticed a rash on my breast! I’m freaking out ! Has anyone experienced this. It’s been four months since I havingfinished radiation treatments. So now what?

    I called the oncologist on call and was able to chat with him. From what I described him over the phone, he doesn’t think it’s cancer but he cannot guarantee it till he sees me in person. He thinks it’s radiation side effect even 4 months after end of treatments. Anyhow if I see it gets worse I can be seen by a doctor. For now I will try to have a good weekend. Any words of comfort is welcomed.

    We are all here for each other. Positive vibes.