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
1111214161719

Comments

  • Eigna
    Eigna Member Posts: 256
    Options

    Hey ladies, hope you are doing well.

    So I started experiencing I believe dry eye syndrome. As I tear up anytime but mostly if I am out in the cold weather. No burning or itching sensation. Just tearing up. Any suggestions

  • jrnj
    jrnj Member Posts: 407
    Options

    thanks kat! Have you asked your new drs about getting the other ovary removed? Sloan wanted to do Lupron. But my local MO is on board with removal. I meet with the gyn in a few weeks

    Eigna, my eyes are very teary too. Haven’t done anything except TakeClaritin.

  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    My eyes have started to water too. The Dr said it's a side effect of the Taxotere. I've been using the preservative free eye drops. That seems to help a little bit.

    Right now I'm dealing with extravasation and IV infiltration. Basically from when the Taxotere backed up under my skin when my IV got knocked out on the last chemo. They are referring me to a plastic surgeon for evaluation to make sure there is no damage to the skin. I guess that's the biggest concern. It's red, painful, itchy and a little numb.

    I'm going to try not to let my mind go down the worrying hole. But it's hard.

    I feel like there's been so many random side effects that have happened from this chemo. I'm just SO ready to start feeling normal and be out of the woods. It's tough on the emotions.

    Anyone else feeling this way too?

  • jrnj
    jrnj Member Posts: 407
    Options

    havefaithtoday, yes Did you get the ponytail links I posted on the previous page?

  • Eigna
    Eigna Member Posts: 256
    Options

    Hello ladies! Just dropped by to say hi. 😊

    Stay strong 💪!

  • maryjv
    maryjv Member Posts: 269
    Options

    Hello ladies!! Tomorrow I am set for weekly taxol #3, total of 12....counting down the days for sure!!! Taxol has not been so bad it’s just been my immune system and GI that are all over the place!!! Stay strong!!🙏

  • Eigna
    Eigna Member Posts: 256
    Options

    Stay strong Maryjv ! You can do it

  • maryjv
    maryjv Member Posts: 269
    Options

    Hello ladies! Taxol #3...my counts are low, anemic (def feeling short of breath and weak upon exursion), my left fingertips are numb and my hands are falling asleep at night! My MO reduced the dose for today but says we are stopping taxol if this continues because she is fearful for quality of life and neuropathy damage....will keep you all posted 🙏

  • jrnj
    jrnj Member Posts: 407
    Options

    Me too. Was supposed to have last chemo today but got a shot and will have it tomorrow. My hands are also getting numb and tingling when I sleep.

  • Bejeweled
    Bejeweled Member Posts: 22
    Options

    Maryjv and JRNJ - I am so sorry to hear you both have some numbness and tingling. That stinks. I assume You’ve been icing and it just hasn’t worked as well as you would hope? I am on infusion #10 (today), which is #6 of 12 for taxol and herceptin. I have been icing and haven’t felt peripheral neuropathy symptoms yet (knock wood). I haven’t experienced the eye tearing but I can definitively see how that would be worse in the cold.


    Havefaithtoday - in answer to your question about it being tough on emotions? Yes I feel that too. Some days are worse than others of course. It stinks. But you aren’t alone for sure with that. I feel like I’m on a slippery slope. Everything leads to some other issue, like peeling the layers of a rotten onion. Example...had my echo which was normal, but incidental liver finding, led to liver US, led to GI consult and lab work, led to needing a whole new Heb B series, and on and on. I’m getting some nosebleeds with my congestion and dehydration and NP suggested I may want to see ENT. I flat out refused. I’m just over the rabbit hole of problems. Like you, I just want to feel normal again. I pray we all will get there soon.


    Eigna- nice to hear from you! I hope you are well!

  • gearup52
    gearup52 Member Posts: 12
    Options

    Maryjv and JRNJ, hi ladies sorry you are having problems with neuropathy. I am doing DDtaxol so I will be having #4 on Mon...YYYAAAAAA! I am cold capping and I ice my hands and feet with ice. I have had very littlt neuropathy. I do get the occasional warmth on the bottom of my feet and tingling in both of my thumbs. I rub vicks vapor rub on my had and feet daily and it gos away instantly. Who would have thought...and it softens up my crusty feet. So after #3 my onc gave me neurontin, motrin and percocets to manage my nerve/bone pain cause by taxol. It is call Paclitaxel-Associated Acute Pain Syndrome. I am so mad with myself for suffering so badly the first two times because I felt sooooo much better this time with meds. I hope things continue to well for you guys!

  • gearup52
    gearup52 Member Posts: 12
    Options

    I had my last Chemo treatment on Monday....Yeaaaaaah! As hard as it was it went by quick (4DDAC & 4DDTaxol) now for some recovery then on to Radiation.

    I hope you ladies and doing well and have your complete date soon!


  • Eigna
    Eigna Member Posts: 256
    Options

    Hello ladies! I’m doing good. Staying home and trying to protect myself from the Coronavirus! Going to the hospital for a scan tobefore radiotherapy starts. It looks like I will be starting on March 30th. I’ll keep you posted. Stay safe and strong.

  • maryjv
    maryjv Member Posts: 269
    Options

    hello ladies! My MO stopped weekly taxol for me...tbh the taxol had been worse than DD AC! Neuropathy; nose bleed, bleeding/aggrevated/pulsating hemmoroid!! Oh it had been rough! Now I am pushing forward with surgery and rebuilding my immune system! Stay safe ladies, praying for all of us as well as those just starting chemo

  • jrnj
    jrnj Member Posts: 407
    Options

    Gearup52, Congrats!!! Yay!!! My last was 3/10. Worst thing right now is everything taste disgusting and I can’t wait for that to go away. Looking forward to feeling better.

    Mary and havefaithtoday hope yourfeeling better.

  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    Hi Ladies,

    Mary, sounds like you've had to endure some tough side effects. Glad they stopped so your body can heal.

    Bejeweled, how are you doing and where are you in your treatment?

    Gearup & JRNJ, congrats on finishing chemo!! Is radiation next for we either of you?

    Eigna, sounds like you and I are on similar schedules again.

    Been thinking of you all so much lately. How are you all doing? How's everyone handling everything with these crazy times? I was thinking of all us warriors surviving chemo...then I thought, not only are we surviving chemo, but we are surviving chemo through a pandemic and the craziest time in our world. We are going to come out stronger than ever!!!

    I went for my radiation simulation today and I start Radiation on Monday. Mostly just anxious to have to be doing it during these crazy times, but I just gotta put one foot in front of the other and march on.

    Sending healing love to you all!!

  • maryjv
    maryjv Member Posts: 269
    Options

    Hello ladies!!! Well said havefaithtoday!!!!! I am scheduled to have double mastectomy with diep reconstruction on 3/27....everything is just moving so fast! My SO says no radiation needed!!! I’m glad we were able to schedule surgery soon because I’m afraid of what our hospital systems will look like even a few weeks from now! Please stay safe and keeping you all in my thoughts and prayers🙏❤️

    Here in San Antonio people continue to horde food and paper goods, all the restaurants have shut down except for pick up and delivery and the schools are closed until further notice...how is life where you all are from

  • amyhey
    amyhey Member Posts: 42
    Options

    My port removal was delayed 90 days because it is considered as elective surgery. Anyone else experiencing anything similar because of the pandemic

  • jrnj
    jrnj Member Posts: 407
    Options

    Maryjv, please keep us updated on your surgery and hope all goes well. I'll have DIEP in fall.

    Havefaith, Had radiation mapping on Wed and will start 3/30, I hope they don't delay or cancel on me. If you go to older posts, I posted the ponytail information. I've actually been wearing my wig this week because I was tire of spraying my roots with root touchup.

    amy, so sorry. This really stinks. I'm so glad I finished chemo 3/10 and I didn't have a port. I've been getting shots for low blood counts, but think I'm done. I start radiation 3/30 and so far not delayed. I have an appointment with gyn on wed about getting my ovaries out. I suspect they will consider that elective and delay it.

    NJ is crazy, same as San Antonio, kids home from school, husband working from home. Overall I'm doing ok and not the type to panic over this type of thing (I panic over other things). I've been grocery shopping and luckily already had a lot of toilet paper, lol. My daughter had minor surgery last week and I had to take her, my husband refused because he had to work. My husband is the panic type and is driving me crazy. Thinks he is just as high risk as me because he smokes. He is 7 years younger than me, 47. I'm sad for the kids and the economy. Sports cancelled, etc... But I am grateful for a lot of things, my kids are old enough to do their work independently, my chemo is finished, I'm already home from work still on leave, and work for the state so have good benefits and won't lose my job. If my kids were in elementary, I would be going crazy. They fight a lot, but seem to be getting along better because they only have each other. I miss being home alone, lol. I know it's weird but at least dr appointments get me out of the house, lol.


  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    Mary, praying for you that surgery goes well and for speedy healing. This probably is the best time to get it done before things get crazy.

    Amy, sorry to hear about your port delay. Maybe they'll be able to push it up. What's next on the horizon for you?

    JRNJ, glad chemo is done for you. Sounds like you have a lot going on in your house. Take care of your self. I remember seeing the ponytail, but was it one you clip to some of your own hair? I don't have any hair....lol...but it is starting to grow in now.

  • Bejeweled
    Bejeweled Member Posts: 22
    Options

    Hi guys,

    Congrats to those who have finished! What a wonderful accomplishment - I hope you are feeling stronger every day and reclaiming your sense of self!

    I had #12 today...4 more to go. I am feeling ok. Some side effects but they are not terrible.

    COVID... ugh. Just complicating a complicated situation. I work in healthcare and things are obviously a little crazy right now. At least I am still able to work and get paid. DH is laid off temporarily. My twins are seniors in HS and lamenting the loss of many milestones (but are understanding of the severity of the situarion, just disappointed). And the chemo show must go on, so plugging away.

    I am praying for normalcy soon... both from COVID and breast cancer treatment. We will for sure get there!


  • margo53
    margo53 Member Posts: 131
    Options

    Hi everyone,

    I’ve been absent a long time it seems. I have been reading all the posts. When I finished chemo 7 wks ago, I slowly went into a reclusive rabbit hole.... dunno why, you would think, I would have been happy, which I was happy to finish, just have a tendency for depression...

    I’m feeling better in that area and have gradually gotten to feel better from the chemo .... adjusting to the new normal.... definitely left with some issues , some that I dunno if they will get better or not... periodic neuropathy, multiple testing for the chronic cough, cellulitis in my foot, lymphedema, getting PT for that.... fortunately it was caught early...... stopped up tear duct ....chemo brain but taste buds are good now! ...... hopefully all of you will have minimal/ no residual issues...

    I have finished 10 out of radiation treatments. That’s going ok, some redness, but tolerable....No hint of cancellation of it due to Corona Virus. I’m sure it’s considered a doctor visit. I drive up, get temp taken, park, then they call me when it’s my turn, so I go straight back... I’m out of there in 20 minutes.... takes longer to undress and dress than treatment takes....

    I see my MO on Monday so I’ll be getting the AI prescription then... Hope everyone is hanging in there, safe and well

  • Eigna
    Eigna Member Posts: 256
    Options

    Hey Margo. Nice to hear from you.

    I went last week for simulation scan. Still waiting to hear from the hospital as to when I'm starting the radiation treatments. That's great that you had already 10 treatments. How many in total are you doing? What kind of cream are you applying? Did your hair start growing back?
    I have some minor cording issue which I will address it to my MO when I'll see him. I'm kinda scared with the Coronavirus outbreak Are we considered immunosuppressed even if we have finished chemo?

    Keep in touch!

  • margo53
    margo53 Member Posts: 131
    Options

    Hi Eigna..... when I had my mapping done, it took about a week or a little less to hear back. The tech explained tome that they send your mapping info off to a doctor and a physicist and they come up with the plan based on the mapping. I would call them for a status. I am having 20 total. Today will be #12. I am using Aquaphor at night and Udderly Smooth Body Cream. I use Eucerin on my arm. My RO office has samples of them and I pass right by them walking in for my treatment, so I grab one and put it on there after my treatment. That way I don’t get busy when i get home and forget. They also told me to stop wearing a bra as much as possible, due to moisture from sweat=“a recipe for disaster” ( their words). And to sit like topless , when I’m sitting, watching tv, etc. I have a bad shoulder and it’s difficult during the treatment to lie with my arms over my head like I have to do.....about 10 minutes. The deep breaths have not been difficult at all.

    My hair is growing a tiny tiny bit, not much. But it could be my fault for not getting back on a good vitamin. I take a lot other new meds and supplements and hate to add more but I need to. I take B6 for neuropathy and Gabapentin for that too. New Omeprazole for reflux. A new Estrogen Balancer and Melatonin ( high dose), both of which as supposed to help with non-recurrence. And Magnesium for chemo brain/ memory, lol.
    I have read different conflicting reports on whether or not I am still immune compromised.... that’s on my list to ask my MO Monday.

    Hope everyone has a nice weekend at home. Stay well and safe

  • jrnj
    jrnj Member Posts: 407
    Options

    Bejeweled, I feel so bad for the kids that are missing major milestones. Grateful my kids are not in graduating years. I'm missing soccer, I think more than them. Today they both asked me to hang out with friends tomorrow and their friends parents said ok. How do I respond to that? No, because you might kill your mother. I said they can ride bikes only, no hanging out, and stay 6 feet apart.

    Margo, Sorry you are feeling down. I finished chemo 3/10 and was really happy about that but am feeling down now too because taste is still horrible and I developed neuropathy in my right hand at night in the last few weeks. Last night was the worst, a lot of pain and didn't sleep much. I need to get up and move around for it to get better. I am also mentally struggling because it is only the cancer arm/side, and I'm afraid it means the cancer is growing, because I had the same symptom before surgery and my chemo is not supposed to cause neuropathy.

    Eigna, I went for mapping last week too. I start 3/30.

    No signs of canceling radiation, but I had an appointment with a gyn oncologist this week and they delayed me for a month. I had a feeling. I want to get my ovaries out and I think they will consider it elective and delay it. So I'll have to just wait and see. I'm doing radiation til mid April.

    NJ is #2 State in the country with corona cases, 57 in my town, 236 in the neighboring town.

  • Eigna
    Eigna Member Posts: 256
    Options

    Hello ladies! I finally got the call today. I'm starting the radiation treatments tomorrow (yikes- short notice). 20 treatments in total. Wish me good luck

  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    Hello beautiful warriors!

    I finished my first week of Radiation. Today will be #6 of 20. I'm feeling ok so far. I've been using Miaderm 3 times a day per my RO recommendations. The nurse said the first 2 weeks are the honeymoon period and after that I may start to see & feel the effects. I'm still struggling emotionally with everything. I feel like one minute I'm caught in the 'cancer fears & treatment' world and the next minute I'm caught in the 'pandemic' fears. It's just a crazy time. How is everyone else coping?

    Sometimes I just stop and think OMG...not only are we living through this horrible pandemic and economic downturn, but OMG...we are battling cancer on top of it. Does anyone else stop and think about this? As if fighting cancer doesn't make us true warriors by itself, how about fighting cancer during these crazy times? When we get through all this, we will be SO much stronger than we ever thought imaginable.

    Bejeweled, you're almost there!!! Hang in there. That must be hard for your kids. I hope they are able to do something later for all those graduating.

    Margo, missed you. Glad you are feeling better. You have been a few weeks ahead of me this whole time. I finished chemo 5 weeks ago and also felt a bit of depression and anxiety (both of which I'm prone too). Not sure if it was because of everything going on or what. I'm also dealing with that little cough issue. I saw a Pulmonologist in Feb, but they didn't find anything. What did your tests reveal if anything? It sure is unsettling with this virus going around. I was having some anxiety about radiation having any effect on the lungs. Have you heard of anything? How are you feeling now?

    JRNJ & Eigna, good luck today with Radiation. Let us know how you feel.

    Health and Healing to you all!

  • katej128
    katej128 Member Posts: 12
    Options

    I start radiation on Monday. I’m doing Accelerated Whole Breast Irradiation With Hypofractionation Plus Concurrent Boost. aka. 15 treatments instead of 20. Less trips, less exposure to the virus. My Radiation Oncologist shared info about all the research that proves cosmetic and functional outcomes are the same or better with this accelerated plan so I feel good about it. Anyone else on this accelerated plan?

  • havefaithtoday
    havefaithtoday Member Posts: 88
    Options

    Hi ladies, haven't heard from you all in a while. How's everyone feeling and doing?

    Katej, how did the start of your radiation go?

  • katej128
    katej128 Member Posts: 12
    Options

    1st daywent well. The only side effect I have is intermittent internal pain in the breast. Never read or heard anything about that as a side effect. Anyone else expert this? It’s not bad, just annoying. Will this continue? I’ll ask when I go back for 2nd treatment today, but any insights would be helpful.