Chemo starting January 2019
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Anyone with the inside of their nose bloody and bleeding easily?
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Ruffian, yes, I had the nose bleeds from day 9 through 14 after my first infusion of TCH. It's stopped for a few days now, so time for infusion #2 tomorrow.
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Well, I wasn't expecting it for at least another week, but today my hair began falling out. I felt like I was picking stray hairs off my top all morning at work, so midday I went to the restroom and ran my fingers through the back of my hair and came away with a substantial handful. I kept it together but all afternoon I was hyperaware of my scalp. I have an appointment tomorrow after work to get it shaved off. My mom said she would get hers cut short at the same time, and since my brother will need to drive her over, it will turn into a big thing. Good news is I have my appointment to get the wig I ordered last week Wednesday. Yay me for not waiting!
Ruffian~ I have had blood spatter when blowing my nose recently but, since it is winter in Minnesota and not only are we hovering around 0 degrees and the air is desert-dry, I just assumed it was the usual seasonal stuff.
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MLAnne, I'm with you on how weird it is when the hair actually starts to come out. I was expecting to wake up one day and find all my hair lying on my pillow, but instead one day I just realised that I could get a handful anywhere on my head and out it would come, easily & painlessly. A couple of days ago I got my 13 year old daughter to cut my hair really short (similar to you RdhJoy!). At first she didn't want to do it and was a bit freaked out but I said it might be the only time she'd ever be handed a pair of scissors & told to do anything she wanted! There were a few weird hairstyles along the way but it was fun, my younger two also joined in and did some hacking. I was only going to keep it overnight and then shave, but have been getting so many compliments on my "new hairstyle" that I decided to wait another day or two (despite the scalp discomfort). I keep asking my husband if he can see bald patches yet because as soon as that happens - the rest is off. Anyway I hope your wig looks fabulous!
rrshannon, I'm so glad to hear that it's easier this time than your experience with AC all those years ago. It's really strange how it changes the taste of water. I'd heard people saying water tasted gross, and I really couldn't understand it ("water has no taste!") but it totally does. I was very relieved when that went away, because it was really hard to drink enough.
Jenkins00 - hope all your ailments clear up soon. You made it sound funny, but it sounds like a rough combination!
Tonight we're having a 'celebration dinner' (my son's idea) before I start fasting again tomorrow morning ready for AC#2. It's amazing how quickly it's come around again.
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B74 hope round 2 goes well. The water taste has been getting a little better thankfully I was able to stay well hydrated yesterday. My sore throat is feeling better which is a reflief. Funny thing my family seems to think my skin color is gettin darker. We were able to take a trip to Maui between Christmas and New Years while we waiting for more test results but I would think my tan would have started fading. Only time will tell. It might all be in their minds and the lighting. I also got a short cut over the weekend. Loving the short look while I wait for the rest to fall. Hope everyone is doing well today.
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Hi All,
Just started Chemo (Taxol + Herception) weekly for 12 weeks then Herception only every 3 weeks for a year. This is a recoccurance of ER+/PR+ and this time the added fun of Her2+. First time was 9 years ago and I had a lumpectomy and radiation only, This time I had a partial mastectomy and reconstructive surgery at same time. Also had Inter Operative Radiation a new Therapy that allowed me to have radiation a 2nd time which is not usual. I had my first chemo 6 days ago and must admit that it kicked my ass. I am getting a low dosage but still I was useless for the 1st 4 days. I am hoping to find someone that is on the same track as me so that we can compare notes. I am trying to work during this and I am trying to figure out what to expect. I knew I would take a hit in energy but I am surprised how mentally weak I am as well. Anyway, I look forward to hearing about all of you and hope to give support too.
BTW - how do you get this signature with all of the info on it? Can't seem to figure that out!
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B74 - I have to keep this funny or I am going to lose my sanity. I feel like I am a teenager with a bad case of acne.
I called out yesterday and working from home today as now I am dealing with the wonderful GI issue. I don't know if its from chemo or the anti-fungal medication as it is a side effect. I just want this to end so I have some good days before my next round.
Today I used Instacart for the first time. Groceries delivered from local stores. Nice to have since I am home alone this week and needed additional bland food. I didn't want to attempt to try and go to the store.
Hope ya'll are doing well and stay warm for those in the mid west and northeast.
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Hi JES in LA. Welcome to our group, sorry you are back but glad you found us! This message should show up when you are entering diagnosis and treatments in my profile section:
Note: Adding a new treatment is private. You can update them to public under Settings. Public treatments will appear in your Discussion Board signature.
Just click on the settings hyperlink and change to public. Edited to take out hyperlink so everyone couldn’t access my account
Jenkins00– it's so great your spirits are up, I too loved the humor in your post.
Since I'm the last one in the group to go it's great to read all of your experiences and get your tips. I'm getting quite nervous but finally am working full time so that keeps my mind off things ( except when getting the pre surgery calls)!
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Mncteach, I’ll find out tomorrow my specific chemo plan. I’m expecting/hoping to start very soon, but I had a lung nodule & 2 liver spots show up on myCT scan so maybe that may change things. Now I’m really having trouble sleeping, as if BC alone isn’t enough
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Rosie24, so sorry to hear of additional complications. I hope that you can get some rest. We’ll all be thinking of you..
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Ruffian188 My nose has now become a little bloody as well at Day 5. Everyday seems to bring a little something extra
The sore throat is almost gone, the tiredness is improving a little and I think either the bone pain is improving or I have the right combination/time of meds for my body. Hope everyone is doing well. B74 hope your infusion went good.0 -
So it seems I won’t be having infusion chemo after all, as I am now diagnosed at Stage IV. I’ll be starting oral chemo and hormone blockers tomorrow instead. Wishing you all the best in your treatments and recovery
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Oh Rosie I’m so sorry to hear your news, that’s devastating. I don’t know what else to say except I hope you have lots of love and support around you. I’ve heard the oral chemo can be pretty harsh esp on your digestive tract, but I hope it really knocks those liver spots & lung nodules. Sending lots of love.
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hi everyone, I will also be starting my treatments this month. I hadn’t my port placement procedure today (still feeling a little sore) and start infusions on Friday January 25th. I am triple positive and will be doing TCHP. Is anyone else doing this regimen? I am also doing the cold cap as well
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Hi Amf, I’m on a similar regimen, except no Perjeta. I’m triple positive as well, and had my first infusion of TCH last Friday. So I’m a week ahead of you in treatments. My main complaint has been constipation (Sunday was horrible) and now some diarrhea. Other than that, I’m doing better than I expected with SE’s, some minor issues but manageable. (Yes, I know I’m inviting trouble with that comment!) One thing I wish I’d done was tackled the constipation proactively on day 1. I’m now on a daily stool softener. I’m not doing the cold cap. Just starting to notice more hair in my brush, but not losing it in clumps yet. I know that’s coming soon.
I got my port the day before my infusion and was worried about it being sore. I used the lidocaine and had no problem at all with port pain.
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B74, Thanks for your kind words. I do have a wonderful husband and family and good friendsfor support.
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Rosie24 sorry to hear your news. sending good thoughts and prayers your way. Hoping the oral chemo starts shrinking those spots and nodules.
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Tomorrow is my second treatment. I took my steroids at 4 today and I still cannot sleep......
So, my week was fun. My 12 year old daughter was hilarious with my hair Monday. She was so timid at first, I got a bob, then a little more. Then she started having fun and chopped away. Ended up with really short in the back with a bang in the front. She had a good memory and not a shit one which was the goal.
Tuesday I had it all shaved and had my wig fitted. It's such an odd feeling. I was so inconsolable Saturday night and then I just didn't care. My wig is pretty close to what my hair looked like. It feels bizarre wearing it with the stubble. It's hot and sweaty under it. I fear it will shift and slide off. The I picture myself just ripping it off and saying idgaf. We'll see.... I did get myself a chocolate malt as a reward lol!
Praying for a calm weekend. Two of my sons have birthdays next week and I have mom guilt that it won't be the same, I won't be able to do for them what I usually do. Sending prayers to all of you.Think of you all often 💗
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rdhjoy,
I am having similar wig experience. Just got it Monday, stylist trimmed and thinned it yesterday. Looks pretty similar to my old hair. As my 30 year old son says, “you look like my mom” 😀.
But when I’m out in public, if it shifts a bit, I fear it looks odd (it hasn’t). And then at times it is comfortable enough that I absentmindedly reach up to touch my scalp and am surprised to feel the cap.
Treatment #2 2 days ago, ready for the SE to start kicking in. Hoping I will be able to be more proactive with right meds at right time this go round.
My mild scalp soreness went away after I got my husband provided buzz cut last week, and I was surprised at how much stubble still there—felt like it was all coming out before the buzz. Now some scalp soreness back so maybe the stubble will be leaving?
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kaylajane - I completely agree with everything you said about your wig. I picked mine up yesterday and the fitter spent time with me to be sure I knew how to put it on properly and adjust the positioning and style it without ruining it. But in the end, it is still a wig and I felt self-conscious with every stranger I met (I forced myself to wear it out to lunch and shopping.) Today will be worse since I go back to work and will be seen by people who know me. (Besides my DH, who came with me yesterday and kept assuring me it looked good and he liked it.)
Rosie~ I am so sorry to hear your news. Can I ask what prompted a CT scan to begin with?
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Rosie24 - Sending good vibes with the oral chemo and I am glad you have a great support system in place.
Welcome Amf5484.
Finally felt back to normal yesterday! This fungal infection kick my butt. Back in the office and I am wearing a hat today. I just didn't feel like putting on my wig because like everyone else I don't feel comfortable with it on. Even though it looks like my normal hair just bothersome. Maybe its because I was never a hat type person. Even wearing headbands or hair accessories I would be uncomfortable.
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Rrshannon, Thanks for your kind words.
MLAnne, I had CT and bone scan scheduled due to node involvement which biopsied as cancer. I assume they were to “rule out" further cancer but instead the CT confirmed suspicious spots for me, and a liverMRI yesterday confirmed cancerous.
Positive thoughts to all of you
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Good luck Rosie!
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Sign me up. I'm starting my first chemo on Monday January 28rh. Trying to stay positive. Pretty much terrified. This is my first official post on this site but I have have perusing it daily. You all are an inspiration to me. I had no idea that I would be part of a community. Thank you!
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Rosie so sorry to hear about but will pray the oral chemo does its job with few or no SEs for you.
sorry to hear about you joining us but welcome at the same time .
so sorry have been Mia for couple days have been feeling ok and have tried doing quite a few of my normal things , end up more tired than normal but good to get out and do things before next Monday and another chemo and its SEs again
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Jennmoon ~ We're are sorry that you have to join our little group but you are most welcome.
Rosie~ Thanks for sharing. I get paranoid that I am not getting the tests that I need sometimes and I wasn't sure what the threshold was to order a CT scan.
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Thankfully life got back to normal this week, so I was busy and happy for the distractions. I've been back here catching up on the feed here. I'm in the same boat as many of you as far as hair loss goes. Last week 2 of my 3 boys took turns shaving my head. They cut it really short, and it's still falling out. But it's just really tiny hairs now. My boys had a good time, and that's exactly what I was hoping for. They seem ok with me wearing hats or going around bald. I've had many offers from friends and family members and acquaintances to borrow wigs. I can't bring myself to try one on. Like some of you have mentioned, I am worried about it shifting or being uncomfortable. It's all preference though. I'm sure some of you would not want to walk around bald either. And my head is also really sore and kind of itchy. I'm getting tired of it washing off when I shower. I feel like a dog shedding all over the place.
Tomorrow is treatment #2 out of 4. I'm dreading it. I'm mainly dreading the Neulasta and the insane fatigue these next few days. Coming here and reading everyone's experiences makes me feel like I'm not alone. I'm praying for you all!
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So as it turns out my chemo was delayed a week. They said the ct scan earlier this week that showed a spot on my liver. Ordered an MRI, which I did first thing the next morning,got a call from my MO saying they are still unsure what it is, although it has benign characteristics they would like to do a biopsy on it before starting chemo. Has this happened to anyone else? I’m being treated at Mass General in Boston, so I don’t know if they are being over cautious or if I should be worried. But why can’t they tell from a ct scan AND mri what it is
Kathy03 thank you for the reply. It's nice to connect with someone on the same regimen. How is the fatigue?
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Amf5484, so sorry you are delayed! The waiting was so hard for me, first the uncertainty while waiting for more tests to determine treatment, then the nervousness of the actual treatment. I just wanted to know all the diagnosis details, know what had to be done, and start doing it. Hope all goes well with the additional biopsy and no more surprises.
I didn’t have any scans other than breasts, but I did have something similar. After my initial biopsy results, my BS ordered an MRI of both breasts to make sure we were only dealing with 1 tumor. The MRI showed 4 “enhancements”, 2 in each breast, that needed to be biopsied. My understanding is that MRIs show everything that is not “normal”, even if it is not cancer. I then had an ultrasound-guided biopsy, but they could only see and biopsy one of the spots (it was negative). Went back for an MRI-guided biopsy. The 2 original enhancements on the left were no longer there, they were normal breast changes. One on the right was biopsied and was positive, but was later determined to be part of the original tumor. So, I did have a couple of weeks of the stress of additional tests that turned out to be nothing. I wish I could have skipped all that because it didn’t seem to add any value, but I am reassured knowing that there is no evidence of anything besides the single tumor.
My fatigue isn’t too bad. There have been a few times when it hits me and I need to nap. My energy level is ok but certainly lower than before the chemo. I’m lucky that I just retired so I can pace myself. (My dx was less than 3 weeks before my retirement, so kicking this is my first retirement project.) I’ve had some aches and bone pain, but Tylenol and rest helps that. Overall, I feel better than I expected. I know it won’t always be this way. I didn’t have Neulasta with my first treatment, and I’ve read that those SEs can be tough so I’m hoping I won’t need it.
My biggest issue is intestinal... swinging between constipation and diarrhea, trying to figure out the balance. More minor issues include flushed face the first few days, minor swelling in hands and feet, tiredness. Hair is starting to thin, but not too noticeable yet. And at 55, I just broke out in acne on my nose and chin! No neuropathy or nausea yet.
Good luck with your biopsy! I know the waiting is agony, but maybe you can use this as an extra week to pamper yourself or get things done before the next phase of this crazy ride.0 -
Please sign me up. I have start my first chemo last Saturday January 19th. Now I have diarrhea. My treatment plan is PTCH for 6 times every 3 week. Then surgery. Then TDM1 for 1 year every 3 weeks and radiation 5 weeks. Thank you!
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