Neoadjuvant TCHP - Post Results Here
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I think how one feels at any point can vary a lot... The first cycle was tough for me mostly because I had no idea what to expect... I mean, I'd read up on stuff here and had a clue, but you really don't know how it's going to affect you exactly.
Definitely keep all your meds around and pop 'em if you're feeling nauseous or if you're getting aches in your stomach (acid burn). They will help you feel more comfortable if you are going out. Also have a place you can retreat to to lie down if you need to. Also, if you're on neulasta or neupogen, then take the advice about claritin (although it may make you more sleepy), and pain-killers if you get bone pain. I didn't have any effects from neuopogen... So I might have been OK at a Shower, although maybe feeling a bit fatigued. And I got stomach pains and some nausea, but Pepcid and Zofran and Compazine really helped with that. So it's just a really hit or miss thing. It will be easier to predict how you feel in later cycles, but some people are OK--so hopefully you will be, too!
I had a bad reaction to the taxotere and/or the perjeta-- so a week after my chemo I'd get terrible diarrhea and dehydration-- so much that I had to go to the ER and get admitted for a 24hr IV drip (and often potassium and magnesium) for 5 days in the hospital. But I felt OK before and after that... To spare the hospital stays, I got a home IV drip for the 2 weeks in the middle of each cycle. It's a pain in the butt, butt, but what can you do? I'm now doing my final chem-- #6... so the end is near!!! I thought I'd sail through because I wasn't in terrible health, but you really can't predict... But I'm happy that my SEs weren't worse!
We all seem to get through, no matter how terrible, so just cross your fingers and hope for the best. Some people really do seem to be able to get through chemo with less problems than others, so you never know!
Just take things one day at a time and deal with things as they come up. It will be OK...
Best luck and good wishes to everyone!
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Oh... I got EMEND with my chemo infusion, too. I never felt wired, exactly, but I wasn't wiped out or anything. I drove myself to chemo the last few times with no problem and would go shopping for some groceries after...
Also-- nails and eyebrows... I still have mine and didn't do anything specific. I have been putting on nail-strengthening coats now and then--particularly when my nails looked like they wanted to chip and de-laminate (peel a bit). At the very least, it helped protect them a bit. Eyebrows-- still have enough so I know where to fill the rest in with makeup if I feel like it. Thank goodness! I actually do have some Latisse, but it's such a bother to put on regularly... I'm terrible about keeping up with so much stuff~ It's hard enough to deal with all the meds and stuff as it is... and even to try and eat and drink enough! Luckily--I've got a wig with long bangs, so the eyebrow problem wouldn't have been the worst thing to happen... But I am glad that there are still some hairs hanging in there!!!
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thanks for the information spent a lot of time outdoors with the kids and went to a new aquarium that was recently built trying to keep my mind off things this weekend I hate that all that runs through my head is cancer will it ever stop! Start chemo in 4 days I'm nervous but excited to get kill this damn cancer growing inside me..trying to make a list of everything I will need before chemo starts it seems never ending.
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Stehpmoen--I understand your feelings about the mind being consumed by this. I am done with rads and I think I'm finally reaching a point where I'm not thinking about cancer somewhere in my mind 24/7. It does get better. Getting moving on your fight to beat this will help a lot. You'll start to check things off the list. Chemo: check. Surgery: Check. Radiation: check! etc, etc. Each time you get to the end of something, it's like something your mind can sort of let go of and you can move on. I'll be thinking of you when you start on Thursday. Thursday?
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stephmoen: you will make it! and you'll do great. as everyone has mentioned already.. hydration is truly key and being on top of things. if you feel something, listen to your body - don't try to push yourself harder than is needed. it's okay to be selfish and take care of yourself.
keep a list of things to do for the weeks you feel better after chemo.. that way, you'll always have something to look forward to. you will have a LOT of downtime with chemo... get a list of shows and movies to watch as you will have a lot of lounging time as well. i don't know if you work or not but i finished so many series while on chemo, haha. also, if the bitter taste of the medications (dexamethasone to be precise) is bothering you, as your taste buds change, try drinking your meds with vernors (a michigan thing) or ginger al.. something that can detract from the taste. during my last few chemos when i would start feeling bad i refused to take my meds because of the taste and difficulty swallowing but i still was alright .. ALSO! you may be able to get the sancuso patch if you cannot swallow your zofran. i was able to get that from my doctor/nurse who advocated heavily on my behalf because insurance isn't easy to convince about that patch.
you've got this! we all know you can make it. there is always so much beauty even in much suffering
we are here for you, always. as i think about more pieces of advice, i'll send them your way.
P.S. make fun plans for yourself for the weekends you are feeling better. it'll seriously push you to get better. i mean weekend getaways or visit to an aquarium, zoo, baseball game, hockey game, etc.
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Keeping a daily journal of side effects and meds I took was really helpful for me, both to help predict how future cycles might go and to communicate better with my medical team. I think by rounds 5 and 6 we had gotten certain things tweaked so that they were working better with fewer side effects. Migraines were a big problem for me (I get them anyway, but the stress of chemo and the headache SEs of Zofran and Aloxi set them off).
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My eyebrows have thinned (but they were thin even before chemo— I've used an eyebrow pencil everyday for as long as I remember!) and the only difference I see in my eyelashes is on one side the lower lashes are half gone. And I didn't use anything either.
For those of you taking Latisse, can you get your MO to write a Rx for this, or do you have to see an eye doctor?
Stephmoen, I personally thought TCHP was one of the "easier" treatments—just based on what all I learned on my January chemo thread. Seems like everyone had a much more difficult recovery each time with Adriamycin (or the "red devil")—so I felt like I skirted some of the harsher side effects. Guess this just goes to show—everyone is different! Hope you have an easy time of it and once you get started you find it easier emotionally also!!
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thanks for the encouragement everyone! Very happy I found this site to help me get through this journey..I had a question for others who have went through this did you know exactly what stage you were in before treatment or did you not find out until after surgery. My pet scan came back good except a tiny spot on my liver they weren't worried about but I was just wondering if there were other ways if they do biopsies of the lymph nodes before hand?
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lorie - My MO did in fact write my Rx for Latisse. I just wanted to meet w/my eye doc before I started to make sure she didn't have other specific issues.
Stephmoen - I agree w/lorie about the treatments. I did 6 rounds of TCHP and it caused me much less problem than Adriamycin & Cytoxan. I was scheduled for 4 rounds of AC after surgery but could only manage 3. And they do have to stop Herceptin when you're taking Adriamycin since both can cause heart damage. The good news is that damage from Herceptin is reversible.
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Stephmoen: I did not have PET or bone scans. I did have a sentinel node biopsy the same time the port was put in place -- the day before I started neoadjuvant TCHP -- which was positive for micromets. My surgeon and oncologist weren't very concerned so I chose not to be either. I feel even less concerned when the pathology after BMX showed a complete response to TCHP. Sometimes I wish I could get a guarantee or gaze into a crystal ball just to be sure.. I am glad you're starting soon. Progress is good! Let us know if you have questions or concerns. That was a huge relief! Be kind to yourself, accept help, and love on those sweet kids. Their love is your best medicine.
You've got this!!
Amy
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Minus Two—another question! Can you use the Latisse to prevent the lashes from falling out or is it more to promote regrowth? Did it work for you?
Stephmoen—good question about the staging. I know that I read you do not get accurate staging until after surgery. But that wouldn't work for us doing the neoadjuvant chemo, would it. Or does the SNB count as the surgery? Sorry I forgot if you said, did you have your SNB done?
Amy—how are you doing with the radiation, or did you finish already?
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laurie - I used two drops of Latisse at bedtime - one drop shared between left lash & brow and one drop between right. I used it to prevent hair loss. I started it when I first started chemo and kept it up for 30 days past major chemo. i didn't continue for the additional year of Herceptin. Lashes & brows only thinned some & didn't fall out but I did not continue for re-growth. Although now that I think about it I probably could have gone ahead & used the last bottle I had & probably had faster re-growth.
stephmoen - I had a tentative staging based on scans both before & after chemo, but the final stage wasn't confirmed until after surgery.
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On the staging--I had neoadj. TCHP with full response. But I'd had node and tumor biopsies and imaging prior to chemo. So my RO and MO still applied staging to my situation after my surgery based on the original info and the fact that no further cells were found in any of the nodes removed.
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This may sound incredibly dumb, but I never asked about my staging. I know it was likely stage 2 or 3, based on node involvement and tumor size, but it was one of the things I just stayed in denial about. And then with a complete response to chemo, they couldn't accurately stage it via surgery. I suppose I could still ask, and perhaps one day I will. I guess I knew I wasn't stage 0 or 1, and I wasn't stage 4. Anything in between there wasn't going to change how I treated it.
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I never discovered my staging until after my surgery. I think it keeps your hopes high? I had every possible test run on me before chemo & a little after my first chemo to ensure it was localized. Head MRI, Breast MRI, pet scan, bone scan, heart scan, am I missing anything? My oncologist was feeling my arm pits once we were discussing treatment options and she felt a node. Right then and there I was sent off to do an ultrasound and biopsy which came back positive. All the scans I received were after finding the node.
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stephmoen: yesterday was your first chemo session right? I pray it went well!!!!!
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today is my first chemo treatment.. I actaully slept pretty well..the Xanax did help..I feel guilty because I'm really hoping there will be someone else my age there not that I wish cancer on anyone but I'm 29 and my last appointment there were all 80 year olds in the waiting room it made me mad and upset.guess I'm just feeling sorry for myself again but wish me luck!!
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Steph, good luck today.
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My wife had a had BMX two days ago, surgery went well and they placed TE, and filled them to 75ml, total fill around 200-250 over the next couple of weeks. The anesthesiologist did a block so the narcotics were limited and she feels much better than if they were to do a more traditional anesthetic. So the results were very good, not a full response but the upper region that was questionable was seen to not have cancer (either pCR or never did have cancer?) and the remaining breast except for 1.5 mm of remaining tumor were benign. She started out with a large questionable area that was 6+cm and two focal areas that totaled 3 cm with satellite legions. Not everything was biopsied. The left totally benign breast had no cancer initially but did have fibrocystic changes so it does feel good to get rid of that breast. All the margins were clear. The actual biopsied tumors were unidentifiable so they had a pCR and there was no lymph-vascular involvement. The nodes were not dissected as this was a simple mastectomy b/c the SNB and initial lymph node biopsy was negative in those nodes. The restage is 1a b/c of the remaining 1.5 mm tumor. On to radiation in about 2 months and full recon in about 14 months.
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first day went well only 5 more to go I was relieved my nurse navigator told me last week I would have to go weekly for herceptin treatments but my chemo nurse confirmed the final orders signed by the dr was every 3 weeks I will double check at my next appointment.. I took your ladies advice a drank LOTS of water and will continue to do so..will see what tomorrow brings she said day 2 and 3 are usually the worst and she said fake zofran tonight and the morning as a precaution..hoping for few side effects!
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Stephmoen - I completed 4 TCHP almost 5 weeks ago. Be careful not to get constipated. Or you can go the other way and get diarrhea. Just try to manage them the best you can. My treatments were every 3 weeks also. Zofran worked well for me. I also took Phergan and Compazine too. I would strongly suggest you ice your fingernails and toenails with frozen bags of peas during Taxotere infusion. Easy to do and I saved my fingernails and toenails. No SE with them. I was supported by a Naturpathic doctor to minimize SE. You GI system is going to be affected first. I started L Glutamine powder to cold drinks it helps with neuropathy. I was able to keep eyebrows and eyelashes but lost all my hair. You can get a wig before you lose it all. I applied at Lollyslocks.com and received a beautiful human hair wig. Good luck my dear!! You are young and strong. We are here for you!!
PMR53
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stephmoen, I am 25 so we're both in the same boat
I think you'll see an array of ages your next time you go, just probably nobody around your age.. Probably more like 30s and up! I hope you do well with the side effects. In terms of herceptin, it will be administered every 3 weeks. It can't be administered weekly because the dosage will destroy you. It's very taxing on the heart which is why you must do MUGA scans every few months and space out the infusion.
Keep up the positivity
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I am so sorry for the young ones who have to be here. My daughter knows a 17 year old with bc. She had to have a bmx! Sometimes life can be so cruel. All we can do is support and pray for each other.
Herceptin is sometimes given weekly, but at a lower dose. Most of us on here have had it every 3 weeks, but a few did weekly.
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Runningcello i didn't know you were so young 25 if you don't mind can I ask how you found your lump I found mine right before christmas the weird thing is my lump is very movable it feels just like a fibroid ..I was just like what the heck is that thankfully it's on the top of my breast in a palpable area i went to my gynecologist a couple weeks later oh just a cyst nothing to worry about and I asked why did I get one he said just luck I guess some go away some don't I even told him my mother had breast cancer last year should have been a red flag! 2.5 months later it wasn't going away and felt a little larger still oh Stephanie it's nothing to worry about "you're too young for cancer" but I will send you for an ultrasound anyways next week I recieved and ultrasound right away I knew they thought it was bad immediate biopsy and mammograms and set up an appointment with the breast surgeon the worst part is my gynecologist is the one who called to tell me at work the following Monday he said hey did anyone give you the results I said no and he goes I got them Friday buyt I didn't want to bother you because it's bad news you have cancer..if I could have reached over the phone I would have punched him!! Thankfully we still caught it early I think someone upstairs is watching over me:) sorry for the long post in probably the wrong thread I just feel better talking about it it's been Avery difficult month my side effects so far is being nauseous and terrible stomach cramps that come and go I just took another zofran hopefully it helps
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I didn't realize you both were so young either. There's no good time for cancer. At 43/44 I felt/feel young in the infusion center.
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oddly enough, I had felt a lump for a few months but never thought anything of it. One day, my friend and I were talking and she mentioned how her sister in law had a bunch of benign tumors so I thought hey I should check this is probably benign. My doctor told me it's a fibroadenemia and not to worry .. She referred me for an ultrasound just to be sure. After my ultrasound I was referred for a biopsy because the only way to be certain is to do that. Mind you, the ultrasound tech told me she could bet her job this was benign. Ugh .. I had my biopsy and 2 days later my doctor told me to come to her office immediately. I had just finished watching The World Cup and headed over there with my friend who was with me at the time. The doctor gave me the results and said take these to the cancer center. It may not be cancer but this is what was found. I still had an ounce of hope. The doctor should not have done that because there wasn't hope. I went to my cancer center and was diagnosed with aggressive BC. My tumor was grade 3, triple positive, poorly differentiated. to me it was a death sentence but thankfully I started to see hope once I started chemo
I was diagnosed June 26 and began chemo July 8. It was an extremely fast process on my end. I had 1.5 weeks to do many of my tests and experience all the emotions I was feeling before I toughened up to get through chemo. Now, I don't perceive this as a death sentence at all. Just a constant thought in the back of my mind (what if it comes back). But the complete response helps ensure I have a good prognosis. Btw, I was 24 at diagnosis. I just turned 25 recently
I was probably one of the youngest patients at the center, to be honest, but my oncologist is a gem. I think she sees me as her daughter so I feel like she gives extra care to me. I actually invited her to my wedding next month and she was thrilled. Long story short .. We had some guardian angel over us because for our age we should have dismissed any thought.
In the end, it was found I had the PALB2 mutation which most probably contributed to my diagnosis
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I'm in my 50s and it felt like everyone was older in the infusion centers! But it only makes sense... it's rarer in younger people. I hope you don't feel you can relate to the older folk, though. Most are pretty cool!
Might depend on what centers you go to, though. When I was at Kaiser, there seemed to be younger people... Then I switched to a PPO... kind of makes sense, too, since you'd get younger people at HMOs and the all-inclusive places with more families...
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I'm there with you Cassie--I'm 43 and there's hardly anyone my age at my treatments, nor at radiation. When I was first diagnosed, the doc said I was young to have BC. I blinked. Well, I guess I get to be "young" at least. LOL
I have gone ahead and made friends with everyone at treatment anyway. I enjoy people of all ages. One of my best friends at church is nearly seventy and another is 24. I've made some great friends.
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I see 43 often on these boards. I'm 43 as well.
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My infusions are over at Karmanos Cancer Center in Detroit, MI. I think it is pretty inclusive in terms of just people of all ages coming through there.. I won't lie, though, I feel like the majority are 40 and above.. but you'll get some folks who look like they're in their 30s from time to time. I would think it's because children tend to go to the childrens hospitals .. and I wonder if young adults are able to go there as well? Regardless, it's still a great time .. especially because older folks tend to be more lively and outgoing. Sadly, I never really made friends with anyone at my infusions or radiation... but I did develop a bond with my oncologist and nurse!!!
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