Calling all TNs
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Hi gals, hope everyone is well tonight.
@seasea58 thank you for sharing, 28 years .. wonderful. Send light healing to your DD.
@pinkone501 I also cut my hair very short the first time around, so it wouldn’t be too upsetting when it started to come out. Actually my hair did not fall out until A/c and surgery. I wore chemo head scarves mostly (pretty ones from Amazon) and it grew back quickly after I finished chemo. I hope you are not in too much leg muscle and hip pain. Perhaps there are gentle stretches you could do that might help. Check out Maple Tree Cancer Alliance, perhaps they have exercises or stretches to download.
Saw my MO and Surgeon and spoke to the RO yesterday when I went in for my cycle 6 of Trodelvy. My treatment plan is now doing Accelerated Radiation for the whole breast for 5 days. With accelerated radiation they still do the entire 3-5 week regiment, but it’s fit into a shorter one week timespan. I go in for the mapping , CT scan and simulation on Tuesday, and then start treatments a week or so later. I’m excited to do this, as the skin is spreading though the tumor has mostly dissolved. Hoping this does the trick for the skin. We decided to do the accelerated radiation as well, because they do not want to stop the Trodelvy, cannot do rad and chemo at the same time. Plan is to do the radiation on my off week. Then I’ll go back to Trodelvy once the rad is done. Feeling good about this.
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I am so glad you feel good about this plan, hope it completely takes care of it, I will ask my Mo to decrease my dose some to try to take care of the leg and hip pain
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@rlschaller It sounds like your medical team is on top of it regarding coming up with a plan for you! Having a positive mental attitude is so important, and you have one of the best here.
@pinkone501 I hope that takes care of your pain. Reducing the Taxol by 20% made my hand (both hands) pain completely disappear.
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Tuesday when I went for the taxol I told the Dr that the benadryl gave me restless legs. So he simply changed it to IV Ativan. I've been good since with a minor exception that I don't want to snowball.
Monday night and Tuesday morn I had some diarrhea. Took 1 immodium Tues. Morn. And gut ache that evening I took another 1. No BM since. How do you get your system to transition before serious constipation. I've started the high fiber foods and no go. Even a dose of miralax.
Gorgeous fall day. Took a 45 minute walk.
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Gail - I found immodium to cause constipation and gut ache, so I avoid taking it. Putting up with a little diarrhea was better for me. Over the weekend you want to drink warm water with lemon, that helps clean the system, and drinking lots of water period, 8 glasses at least - is good to help move bowels along. High fiber foods yes and lots of fruits and veg, no bananas though. Exercise is good, walking especially which I know you do. I love a 45 minute walk ! Call your MO on Monday if it continues, they can prescribe something for you if needed. Glad you enjoyed the beautiful fall day. I’m loving this weather too !
Justsnap - so glad your hand pain completely disappeared ! Awesome .0 -
@gailmary I'm glad the MO had a quick answer for you with Ativan. Enjoy the gorgeous fall weather!
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I don't really know where to go with all that's on my mind. This place has gotten a bit quiet. Either way I'm here.
Infusion 3 yesterday. Literally all I'm feeling is a bit constipated. I 'll work on that. Actually feeling a bit sorry for myself. That's new. Got Ativan again and it knocked me out for the rest of the day.
Dr showed me how what we talk about automatically populated the info in the drs notes on My Chart. To correct an old note he has to go back to the first time it was mentioned. He said that it's almost to a point that the appts are recorded and abbreviated automatically. He clicks a few buttons and the notes are done. But then said he's counted 50 clicks per patient. He likes the time saving feature but not how things are not always put in the correct context. We also talked about peanut butter. Yum.
Saw the surgeon today. I've known I had to make a decidion but he really messed with my head. Several things he said were news to me.
- They are finding they can do radiation to same area more than once. Especially after a long time. 15 yrs here.No he didn't convince me to get it. The Radiation Oncologist can try.
- Implants arent always successful in radiated breast's. Not that I want them but then what do I want.
- Don't always have to do mastectomy due to a second cancer in breast. But if they did lumpectomy and took the nipple, there wouldn't be anything left anyway.
I questioned about just a fat transfer he didn't think they did that. So I took the referral to the plastic surgeon for the 18th.
After that appt I went for first shot of Zerxio. Reminded to take loratadine to prevent bone pain. All good.
I hope everyone here is good tonight and safe from the hurricane messes.
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@gailmary I have MyChart, but I didn't know all that! Sounds like it's ran by bots. But AI is taking over, so not surprised. I'm still surprised they switched you to Ativan rather than just running the Benadryl slowly. I'm almost 67 years old, and opting for a double mastectomy with no reconstruction. But that's just me! I will miss my boobs but I'll get over it lol. Each woman has to make her own decision. It can be a hard decision to make, but it sounds like you want reconstruction and you're looking for options to get it, and there's nothing wrong with that! I was taking a allergy med already, so I just switched over to loratadine so I can get those two birds with one stone, allergies and any side effects from then Zarxio, and now Neulasta. I haven't had any bone pain to speak of, so it works apparently.
I'm safe from the storm and hope everyone here is as well.0 -
Actually not interested In implants or the diep flap. But the gal that did the mamogram said she had just fat grafting after mastectomy . Just relayi g what surgeon said. So I want to look into fat grafting Or I'll go flat. I'm 68.
Hair started coming out today. I got it cut short so I sprayed it with Hairspray to kinda glue it together a bit so it might not shed allover.
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I'm new and haven't started treatment yet and haven't had surgery. I'm having an MRI next week for the doctors to discuss treatment. I am 34 years old and diagnosed 3 days ago with grade 3 triple negative invasive ductal carcinoma and DCIS. It's not completely new to me (meaning having cancer) as when I was 24 years old I was diagnosed with stage 2C ovarian cancer on 10th October 2014. I'm still in shock as I just feel numb and I think unconsciously I'm in denial, I'm worried how hard it will hit me when the numbness wears off.
I'm unsure of what else to put as I've never been on a discussion forum.
Hello everyone btw :)
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Hi @ovarianwarrior90! We're sorry you find yourself here, and with a second cancer diagnosis. Of course you're still in shock. It's completely normal. Try to take baby steps right now, and be gentle on yourself. As you may remember, once you have all the information, and your treatment in place, it will hopefully feel less overwhelming. We're here to help you along the way!
You may also find our Virtual Community Meetups something that could help guide you. The women are great there!Please keep us posted!
@justsnapd8 hang in there! And here is an article on fat grafting:0 -
@ovarianwarrior90 So sorry that your dealing with cancer again, it just plain stinks!! It's normal to be a bit numb , it's definitely a big gut punch. It's just so unfair that you are dealing with this at your age and I wish I could erase it from your life. What I can say is this site is a wealth of invaluable information and wonderful people. Everyone is here for you all the time. Things will settle down eventually for you and you will feel a little better once you have your plan.
Sending good vibes, peace and strength your way.
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@gailmary I know it's challenging with these decision ahead of you. Once you have all the info gathered you will be able to do what's best for you. MY BMX was 2016 with implants and PS did ask me if I wanted fat grafting after to fill in to appear more natural. That's about all I know about that. Sorry your dealing with hair loss now , I know how tough that can be. Hugs
Just wanted to pop on and say hi to let you know I'm here too.
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@ovarianwarrior90 welcome to the forum. It takes a while to get your mind around what is happening, agree with the others give yourself time, breath, know we are here for you. I love this forum ! We listen, we offer support, we share good feelings and ideas with each other as well. Ask questions, talk about your day, share fears or joys… it’s all good. Support works like that.
@justsnapd8 I didn’t realize you were on Zarxio as well. I haven’t had bone pain either. The Neulasta was a pain for me, I didn’t like the clicking sound lol.. sometimes it’s the little things.
@gailmary so glad you spoke to the MO about fixing the notes. I love how you continue to advocate for yourself. One step at a time. Ok to be confused and tired. Cancer treatment can feel like a full time job sometimes. Lots of doctors, lots of decisions, and always a shock when it comes back too. You forget so take your time. I find writing down the pros and cons helpful. I like to draw it sometimes too, with a breast, without a breast, lol .. brings up feelings for sure.
So I bought a bra from AnaOno for mastechtomy gals, with a breast foam piece for the right side, just in case they can do surgery after radiation . I decided for flat myself. I joked with the surgeon my reward for effective radiation treatment will be surgery. Fingers crossed!
Hugs to all !0 -
Ovarianwarriorn sorry to hear you're dealing with cancer again. You already know its not easy. I hope you find it easier than any fears. Rischaller is right. It's like a full time job caring for yourself. Hard as it is you have to do this one step at a time. But I agree, we're here for you. I've tried a few other groups and this is best I think. We get to know each other better maybe cause it is a smaller group. Check out a bunch of posts that interest you and read back several pages. And don't forget to do a search on anything you question.
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Morning Ladies, just plugging along on my end, third taxol/carbo coming on Monday, no hair loss yet but my head is tender so it wont be long, hope all of you are doing as well as can be expected
Extreme fatigue is setting in and she did lover my dose a little so no muscle problems this week so far
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glad to hear you are plugging along ok @pinkone501 . I remember my hair hurting lol.. during Carbo taxol as well. Sorry about the fatigue . As weird as it sounds, movement helps the fatigue if you are up for a walk or stretching, chair yoga. I found excerise helped a lot even if just walking around the house swinging my arms. It helped my mood too. Stay well all!
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@ovarianwarrior90, I'm so sorry that you must deal with cancer again. What helped me was to focus on just the next step or two so it didn't feel quite so overwhelming.
Lyn
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@gailmary, I'm so very sorry that you are having to ponder these blasted cancer decisions again. I haven't been keeping up with research so didn't know that radiation might be an option a second time. A friend who is a plastic surgery nurse had warned me about post-radiation tissue being somewhat more fragile so I decided to have reduction surgery before radiation so have no input on other options. Let us know what you learn / decide.
I'm not on the forum much any more since my chemo pals mostly stopped checking in when the new format was being adopted, but I realized that today marks 8 years since my first chemo infusion. I'm struggling with scoliosis and severe spinal stenosis so can't stand long enough to have a mammogram, but all was well at my last one so I wanted to pop in to offer encouragement for the newcomers and empathy for the "veterans."
Lyn
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Aww @vlhvlh . You need the empathy. I can't imagine not being able to stand long enough for a mamogram. Don't cortisone shots help with that pain? Maybe radiation would help. No kidding. I read a while back they have used radiation in Germany for arthritic knees.
I don't think I want to gamble with radiation damaging my lungs or heart. They used to skip radiation if you did the mastectomy. MO never mentioned it. The surgeon did.
I will just continue gathering info till chemo is done.
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@gailmary, I had an epidural steroid injection in July that helped some, but I don't think the scoliosis and severe encapsulation of both shoulders will let me position my body as needed and hold the pose long enough to do the mammo. I had a chest X-ray, chest CT and abdominal CT last week so feel like I should already glow in the dark so not sure more radiation is the answer. Unfortunately, I can only have the injections every 6 months.
I won't pursue cancer treatment again because of other health issues, but I want to retain a relationship with my oncologist in case I have another episode of cellulitis. Seven years of lymphedema and I got my first cellulitis incident last February after flying home for my mom's 90th birthday party. The only bacterial entry point the ER staff or I could identify was a torn cuticle or two because I was washing my hands constantly to try to avoid picking up any cooties during the trip. No good deed goes unpunished, right?
Re: My Chart, I gave up on their ECheck-in questions. I would respond Yes to a dozen questions and the After Visit Summary (Physician Notes) would always contradict what I reported. I was in the hospital last week and I do like getting my lab and test results promptly on the portal so overall it's a good thing.
Do keep us posted. I'll try to be better about checking In.
Lyn
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Gail, I forgot to mention that, yes, as I recall, a mastectomy meant you could skip radiation, unless there were positive lymph nodes or chest wall involvement? Does that sound right?
Lyn
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Hi ladies! I hope you've all had at least a decent week. Mine was fatigued, brought on by my 2nd AC treatment. I didn't think I could get any lazier! 😂
@ovarianwarrior90 I'm so sorry you had to join us. And that you've already been through cancer treatment at your young age is heartbreaking. Please know that we are here for you to answer your questions or just to support you.
@gailmary I fought with my hair for a few days before I let it go. It was on a Saturday. The shedding was really bad, but I wasn't ready to let my hair go. That Monday was a different story! You'll know when you're ready.
@rlschaller I had Zarxio a few times after the carbo/taxol treatments, and now Neulasta after every infusion of AC. I got the OBI (on-body injector) on my left arm this time and I'm hard of hearing on that side, so I totally missed the clicking!
@pinkone501 I remember my scalp hurting in different places where the hair was turning loose. So uncomfortable! I gave in on mine at about three weeks from the start.
@vlhvlh Happy to meet you! Please keep us posted on how you're doing.
Have a great day everyone!0 -
My daughter was diagnosed with tnbc 6 weeks ago. She’s 43 and I’m 69 this month. I’ve done everything in my power to support my daughter, a high school teacher (she lives paycheck month to month).
I have helped pay any thing outside of her insurance, insurance deductible, cold capping, getting dry ice, made healthy meals, so much more. I’ve been in the waiting room during chemo while her friends did the capping. I’ve made multiple trips to her town as she lives 1 1/2 hour drive. Anything and everything she needed I want to help her.She won’t let me go to any of her doctor’s appointments, won’t let me stay the night with her before or after chemo for convenience but wants me in the waiting room. I’m happy to do or not do anything she asks. She says ‘I’ve got this’ and ‘I’ll ask for your help when needed’.
So biggest issue is that whenever I’m with her she is extremely verbally abusive to me. Stating I need to get my brain checked, my hearing checked, there’s absolutely nothing I can do right.
She is hateful and demeaning to me no matter how hard I try. She puts me down all the time. She treats everyone else with respect. I drive home crying seeing my daughter in this condition and I vowed I would keep helping and being there for her unconditionally. Sometimes she texted and called me saying sorry she is being so ugly to me, she doesn’t know why. I’ve stayed strong through her undignified attitude towards me until this last Friday.
This last Friday, she was so critical of anything I did. Whether I was standing (hovering she calls it) doing the dishes because I moved her soap dispenser 2” from how she likes it. I had to leave and I couldn’t take this any more.
She claims that I don’t do things how she wants them done, but I don’t know how. I do my best.
This past Friday after delivering the dry ice to her and driving around to get more since she claimed the 70 lbs she asked for wasn’t enough.
She doesn’t show appreciation any more. All I was hoping is this was my opportunity to show her true motherly support and dedication and hoped it would draw strengthen our bonds and get her on the road to recovery.
I have prayer chains going for her and last night wondered how this all could be spiritual warfare.I’m at a loss!
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@rosekesh, we are so sorry to hear of the reasons that have brought you to our site. Being a caregiver of a loved one with cancer can certainly be challenging and overwhelming for both the caregiver and the patient, and we applaud you for all that you've done to support your daughter so far. If she's asking for space (which it does sound like she would prefer some more alone time to handle or process her treatment privately), try not to take that to mean that you're not still being helpful, or wouldn't be readily available if or when she does need your support.
Here are some resources for caregivers that we hope may help:
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Rose, it's so hard to be a mother. And to see your daughter hurting is awful. I wish I could make it go away for you. I imagine just posting here helped some. I know it would help me. Good luck to your daughter and I hope find the support you need.
Gail
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@rosekesh I don't have children, so I can't imagine what you're going through. I do know that I wouldn't tolerate the abuse. I treat my caregivers with the utmost respect, and she should too. It sounds like she's angry and taking it out on you. She needs to talk to a social worker who can guide her toward counseling. You do not deserve the abuse.
Good morning ladies! I've had two of four of my AC treatments, and I wanted to get feedback on how long y'all felt like crap after AC. I've got it written down, and it's ten days for me. I don't eat much meat during those ten days. There are days when a peanut butter sandwich is what's for dinner. Grilled cheese for lunch? Then there are the tummy issues. I do manage BM's. Sometimes firm, other times not so much. and then there's the gas! And I get what I would call pelvic floor cramping. That's really what I wanted to ask about. I'll try to remember to ask the NP about it, but did anybody here experience that?
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@rosekesh - so sorry to hear about your daughter, as a parent when your kids are hurt it can feel devastating. I hope you both find a loving space to heal and care for eachother. That is terrible how she is striking out at you due to her pain. Agree with all the gals here, you need to take care of yourself and set your own boundaries for your own self care. Hopefully the care givers support group will help , and your daughter finds help with a therapist of her own.
@justsnapd8 sorry to hear about the gastro issues. The AC affects everyone so differently I’d definitely talk to the NP about it. I looked back in my journals, and I felt really crappy for about four to five days after each infusion, then ok. I remember hating feeling so unwell, I took the nausea medicine which helped, and meditation focusing on breathing… and basically just waited it out. Eating was hard , had no appetite and my nurse said to aim for 6 small meals so to keep up strength and go for walks. The good news is that there are only 4 treatments of the harsh AC.. so you are getting close to finishing. That one was the hardest of all the chemos for me.I have some updates , I spoke to the RO, and she decided it was safer for me to go for 15 treatments not the accelerated 5, as they want to encourage the skin peeling and it would be too much over too large an area in just 5 days. So from the CT scan/mapping she chose a larger area for the radiation. Now I wait for their smart rounds to conclude and then I’ll start, Probably in 2 weeks. I see my MO on Wednesday and will hear her opinion. They will have to sequence the Trodelvy around the radiation, so we’ll see. I will hear about the PET scan results then as well. My MO wants me to see a colleague of hers at MSK who is an expert on TNB for a second opinion , so that is in the works too. So lots going on will keep you all posted 👍
Hope everyone is having a good day, it’s lovely here in NJ. The leaves are changing, the sun is shining, and the NY Yankees are going to the World Series lol… life is good.
Cheering for everyone @pinkone501 and @gailmary hope all is well and Sending hugs 🥰 to all on this thread .
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@rlschaller Thanks for the insight. I have an appointment with the NP this morning and will mention the symptoms to her. I am so grateful that there are only FOUR cycles with AC, and I only have two to go! I should be more diligent about taking the nausea meds. Even though sometimes I don't feel like I'm nauseous, it might still help. I do eat small portions several times a day, not necessarily meals, but it's something!
I haven't dealt with radiation yet, so it's a foreign language to me. But it sounds like going for 15 rounds rather than accelerated five, would be safer. Why get a mega dose when you don't have to? You've been through so much already! I'm sure you're anxiously awaiting your PET scan results, I know I would be.
It's been cool here in Louisiana, but it's warming up again. Everything is evergreen here, so we don't get the changing leaves like y'all do. I have got to get up there and see that one of these days. congratulations on the Yankees win!0 -
I see the moderators started a thread on A/C chemo. Sounds like nausea is common. I don't mind the lazy but the nausea I'm not looking forward to. My tummy has not been right,but not nausea. This is after CT. I think I'll try something. The compazine I tried made me really dizzy. I will try half or Zofran.
Peanut butter yum. French toast has been agreeing with me. I can see this might be an easy way to loose some weight. But it isn't healthy. Good thing there are only 4 of those.
I had radiation 15 years ago. No problems at all. Hardly an inconvenience. Just 12 minutes from the house. I hope it goes well for you.
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