Starting Chemotherapy March 2018
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Urdrago.... Hope this all gets better fast!
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thanks Bec-ky, I'm sitting around with wash clothes on me to calm the fever and comfort. I wouldn't of ever thought a sinus infection would hit so hard.
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Happy Memorial weekend, everyone! hope you are getting a chance to relax. I had round #4 last week, feel like things are gradually tilting to normal. My MO lowered my docetaxel by 20%, as I was getting worse neuropathy, and had started dropping things. I was obsessively pricking my fingers to see if I could feel it, and nothing felt sharp to me. That does seem to be getting better, I am just telling myself I only have 2 to go. After feeling pretty fortunate that I hadn't had anything too awful, I got a fever 2 days post infusion. I just took tylenol and waited it out. Felt better by Sunday. My counts are always good, and I didn't have any other symptoms of infection. I did notice a weird irregularity to my heart Saturday morning - not rapid, but very irregular. It went away after about 4 hours. I have a follow up echo later this month, so I hope that is all fine. I miss sleeping through the night. The hot flashes are pretty intense, and I sweat a ridiculous amount. I did get a bunch of tiny little pimples all over my chest after my first infusion, but not much since. Any little scratch takes forever to heal. At least I never have to shave my legs anymore.
My husband has been dying to shave off the rest of my hair, and I was tired of the molting kiwi look, so now I am a shaved egg. I have started going to work full on bald. It is cooler, and I am tired of hats and wigs. Yesterday I had to tell a coworker she has breast cancer. Holding her hand, telling her this, and that she will get through this....I feel like maybe there is a purpose for my cancer after all. I aways felt so helpless giving bad news before. Now...I understand what it is like to be on the other side of that news.
We had planned a family vacation to Mexico over a year ago, and my last infusion is due the week we will be there. I am glad that I will feel good for my trip, of course right after the 4th of July I will have to go in, but then I will be done!
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Hi ladies, hope everyone is doing something a little bit fun this weekend!
Persnickety, I had the irregular heartbeat/atrial fibrillation and ended up in the hospital, this past week I met with a cardiologist. While I may have an underlying/inherited heart condition, the cardiologist said there still would have been a "trigger" for the attack, which seems to have been the really low potassium and anemia. I have been on a potassium supplement and my heartbeat is much steadier, and now, 3 weeks post chemo, my pulse rate is even getting a little slower. I had a follow up MRI as well, probably will get new meds down the road, but I will say that now having the chemo clear my system, I feel so much better and not having that tired, short of breath feeling anymore.
Had a bit of a freak out moment the day of my radiation mapping - during the CT scan they found one enlarged lymph node under my arm, which on ultrasound fit that "questionable" status (halfway between normal and abnormal), meaning biopsy. Waiting for the results and of course there's nothing like waiting over a long weekend. I did already have a discussion with my surgeon, she said that if it needs to come out it's outpatient surgery, no drains, etc., and that it won't delay radiation long so long as I heal well, because the area definitely needs the radiation after. On the scan and ultrasound there only seemed to be one swollen node, really hoping that remains the case. I asked my MO and she said sometimes the chemo does not get all the cancer, one of the reasons we have the rads after. I have to give my team credit, they were so good during my meltdown moment. At this point I am mentally prepping already to have the surgery, although a false alarm would be extremely welcome.
Other than that back to work just about full time and not just from home, now visiting the office and it's great to have that help with a sense of one more thing a little more normal. Had a pedi this morning and it was great not to stress about that, either.
Ladies, hang in there! Hugs to all.
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persnickety - So glad I am not the only one with with night sweats. It all started with chemo and for some reason I missed it on the SE list. Is it a secondary side effect from the chemo induced menopause/hormonal or a direct chemo effect? Just curious since I failed to read about this one. Also, I may have missed this from a different post since I joined late, but am wondering about your treatment plan with the Cytoxan/Taxotere/Herceptin vs Taxol/Herceptin?
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Wildcolonialgirl - congrats on being done and feeling better. It is reassuring to hear that the short of breath feeling gets better - I just feel like I have no endurance. My muscles burn from doing practically nothing. My resting heart rate prior to chemo was high 40's to low 50's, and now it is rare for me to drop below 60. They usually recommend taking lisinopril and carvedilol to protect the heart with herceptin, but my cardiologist thought I wouldn't tolerate a beta blocker with my low heart rate. Now I kinda wonder.
Becca - I had drenching sweats after my first chemo, then it seemed to subside and I didn't really notice it after the 2nd. Now I think it is chemo induced menopause because it is more feeling terribly hot, and it comes over me in waves with flushing, and not quite as much sweating. As far as the cytoxan/taxotere/herceptin - I actually had 2 separate tumors very close to each other. My initial diagnosis off biopsy was high grade triple positive - but only 2.1 mm of invasive cancer. My MRI showed an area close to the clip, and they thought that was all the original tumor. After lumpectomy, that came back as 6 mm invasive ER/PR+, but HER2 negative. Go figure. The oncotype and mammoprint were done off that specimen, which gave me a 30% recurrence risk without chemo. So I guess it is a compromise between the 2 tumors.
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persnickety - my HR was also in the low 50s-high 40s but it's running about 60 on a good day. For a week or so after infusions it climbs to the 70s. I do not like this. I still run but I have a hard time now. My MO mentioned nothing about beta blockers. Up until this round my HR would drop back by the time of my next infusion but this time it has stayed up around 60. I'm going to ask about beta blockers at my next appointment, but from what I understand they stop your HR from getting above say 120 so it may be really hard to exercise. Also, the drop may be due to a decrease in red cell count, which I definitely have. My hemoglobin was ~10 at my last appointment. That's down from 14.3 back in January.
urdrago - I hope you're doing ok. Scary stuff, for sure.
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persnickety - Thanks for clarifying! Interesting how different MOs approach treatment for HER2+ tumors but yours makes sense now. I, too, had 6mm of IDC but was ER+ PR- HER2+. There was scattered DCIS which is what began this ordeal. The IDC was a surprise because it did not show up on imaging. Mammogram showed clustered calcifications, ultrasound showed nothing no matter what they tried attempting to do a core biopsy. I had an MRI after stereotatic biopsy that showed nothing despite 2mm-6mm pockets of DCIS remaining per mastectomy pathology. Perhaps an MRI before biopsy would have shown IDC, but we will never know. The radiologist and my OB GYN thought I was Stage 0. Unfortunately, no. They told me it was not aggressive because the mitotic rate was 1. Then the receptor numbers came back with HER2+++. I have since learned to wait until all the results are in before assumptions. The night sweats are making me crazy. I am to begin Tamoxifen soon, so just wondering what SEs that will produce. My MO did not mention beta blockers either during Herceptin. Hmmm?
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Cocooncat,& hapa, thanks for the thiughts... I'm still fighting the cough, infection but fever broke over the weekend. Ive got mild headaches that I don't know if it's bcuz of my sinus or from chemo..
Other than that trying to go on like everything is normal. While I was sick my mom came to plant my patio garden, cucumbers, yellow peppers, tomate plants, chives, and flowers. But it's too dang hot to be outside and enjoy the view. Lol..I start my first round Taxol this Thursday, praying for mimimal SE's. I was surprised that it's still a 3 hours appt for only one drug infusion..I was hoping for just an hour appt..wishful thinking, I guess..
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Hello Ladies ,
Congrats to all who finished their chemo already and to all still have ongoing chemo I hope for good days.. Mine was delayed of 1 week .
Hugs to all
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My Taxol is always 60 minutes--it's the Herceptin that was 90 minutes for the first infusion, and 30 for the rest of them.
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urdrago - glad to hear you're doing better. I was worried.
Yangsainst - I hope treatments get easier for you.
I have TCHP #4 tomorrow. I'm not looking forward to it. I've been really freaking out about the possibility of permanent hair loss from the taxotere recently. I saw an abstract yesterday that puts the risk of complete permanent hair loss at 10% for people doing six rounds of taxotere, and partial hair loss at ~25-30%. Risk is lower if you're only doing 4 rounds of taxotere. I'm going to ask if there is some other regimen I can do for my last two or three rounds. I'm not sure how they decided on six rounds anyway. I'm still cold capping even though it didn't work, so hopefully that provides some protection for me.
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Anyone else noticing bruse showing up ? Before today not at all but today I've got two. Guess I will be ckeckin for more as days go on.. Need to take better care of my senitive body!
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urdrago71 - Yes. I freaked out one morning about 9 weeks into chemo when I saw my left thigh sporting 3 bruises. I could not remember hitting anything so chalked it up to blood counts taking a hit. Not sure if I am correct, but Ihope it was a chemo SE, too. Add another one to the list.
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Thanks Hapa,
Hoping no new SE too a bit scared after reading other SE's..will have my chemo this friday0 -
Made it through 12 weeks of Taxol/Herceptin, my first week without chemo, and I end up with a nasty cold that started with my youngest. Go figure. I usually do not get sick, well, except for big stuff, like cancer. Guessing chemo had my immune system in the toilet. I am with Bec-Ky, boy do I miss my nose hairs now. It is not dripping but literally running.
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Oh Becca!! That's awful. But, in the grand scheme of things, not Awful, right? And maybe the snot is flushing out the cold germs?
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Ingerp - True. Odd that you do not miss those nose hairs until they are gone. Ha. Hope you are doing well and treatment is going smoothly!
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Hi All!
I just wanted to pop on here and say hello. I started chemo on March 11 of 2016. Finished in August of that year. I want to give you all some encouragement: This whole process sucks, but you can get through these treatments, and hopefully leave it in your rearview mirror. I had days where I certainly struggled, but for the most part, those days are now just an uncomfortable and inconvenient memory. This forum is such a great resource and I've made many close friends here that I speak with daily. Sending you all healing wishes, prayers, friendship, and peace. Take care
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Becca--thanks and so far so good! Hardly any SEs, and if my hair hangs on for three more days, I'll be through my college reunion. :-D
HolaSandy! Love the old timers checking in!!
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Yang-I sure hope you get in Friday and it goes as planned! I am thinking of you often!
Becca- ugh the nose hairs!! I hope they are the first to grow back! 🤣
Urdrago-I feel like I bruise easily... Well not easily but my work is a physical job and I'm always banging into things... But im off now so I notice way less. But after my 1st chemo I did notice a huge one on my calf that I had no idea what that was from! Wierd.
Hapa - what did they say about doing 2 different chemo treatments?
I had my last TC chemo today! Whooooo I rang that bell so hard!
I talked to the NP and I said I was nervous about tamoxifen and heard that the aromatase inhibitors had less side effects and were slightly more successful with preventing recurrence. I only have 1 ovary (one removed at 17), so I asked... Couldn't I just get that one out and then take AI's? And she said yes... That was a great idea and as long as it was something I'd do, and she recommended it as something she would do as well.
So I'm all about yanking that baby out!
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Becca, hope you get well soon. Congrats on finishing Chemo
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WOOHOO BECKY!!
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Well I had my last chemo today! My doctor suggested that I could probably not have to do the five shots after chemo if I wanted to go that route but did say there was some risk with that. She said the reason I had to take them before was because I only had three weeks to get blood levels up before the next chemo. But now that I’m done with chemo it wouldn’t matter if it took a little longer. I was a little uneasy about it so we decided to do three shots instead of five. She did say for the next two weeks I had to be extra cautious about germs. I go back in four weeks then will have to start the pills. Maybe now I’ll start to feeling better. With the last one I was a lot more fatigued.
I was wondering if I could ask y’all if before you were diagnosed did anyone else have sharp pains off and on in the nipple area and just put it off? I did and now my daughter is saying she is having that pain. She just had a mammogram but nothing showed up but very dense tissue. I told her if it still hurts she needs to tell doctor and maybe get mri done. I feel like that was a warning I should not have ignored.
I’m happy to see some others are done also. Congratulations! To everyone else I pray you have few and tolerable SE. There is an end and I know everyone will come through with flying colors.
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Congrat Quitingnut, We have to advocate for ourselves and yes dense breast to see additional things MRI is best. If her doctors doesn't than go else where.. wish I knew that bcuz I could of stopped the growth a year prior. As far as the pain in nipple/ breast area. I had tugging sharp pains on/ off, than it got worse and I had pain all the through my should into the middle of my back(lymph nodes involved.)
Bec-ky AWESOME news today! Congrats....
I'm so excited for everyone just finishing up the Infusions. I think the one thing I miss the most is my hair...hmm,, I look in the mirror some days and forget I'm suppose to be bold. How long til hair starts coming back after chemo? How long do you have to continue blood work after you're done with the infusions?
Holasandy- so happy you stopped by to say Hello! What was the first thing you did that made you feel normal after infusions was completed i
Steph, haven't heard from you in a bit. sending you good vibes...
Tomorrow first Taxol treatment praying for minimal SE's.
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Congrats to all those finishing chemo! YAY!!
So I got my path report back and the swollen node is positive with some cancer deposits, so out it comes on Monday. Will set the start of radiation back a few weeks. My RO said he and my surgeon reviewed the scans, and it sounds as if they feel the radiation will be effective at treating everything else, in case. So I guess I'm better with having 6 1/2 weeks of rads now. In fact, hoping I heal up very quickly to get started as soon as possible.
Have to laugh about hair - what's the one area I could definitely go without it ever regrowing? Of course, that's coming back already! (yes, of course!) For the taxotere worries - I am now just about 4 weeks Pfc and yes, do have peach fuzz (or to quote my husband, stubble). Some is darker and feels more solid, some is white and whispy, but I can now see it in the mirror and feel it so it's definitely there!
For our sisters still on chemo - hang in there! Every day you get closer.
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Congrats to everyone who finished chemo today.. Or will be finishing this week!!!
We're all tough chicks!!! ❤️
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Congrats to all who have finished or are finishing! Everyone on this board rocks!
Ingerp - You should be good on the hair front. I think Taxol hair loss is cumulative and begins around 3-5 for most and continues, it does not all disappear at once. I have seen some ladies keep enough, even without cold caps.
HolaSandy - Good to hear from you and thanks for the support.
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Hi ladies! Thanks for checking on me urdrago, sorry I have been MIA! Nothing really worth reporting lately and end of the school year craziness is in full swing, but I have been popping in here in there to see how you all are doing. So excited to see many of you are finished with treatment or heading for the finish line. I’ll be having my last infusion this morning...both excited and dreading it since I was feeling pretty rough last round!
Wildcolonialgirl good luck on Monday with getting that pesky node out. I hope it’s an easy recovery,
I too will be starting radiation this summer.. have my consult on June 11. I work in a school and am thankfully off all summer, however I’m a little concerned because I will have my two kids with me all summer as well. I know radiation treatments are usually daily so a little worried about what to do with them when I go. I know my hubby and my mom and dad will help as much as possible, but not sure if they can every day. We’ll figure it out but I’m a total planner, so these sort of things drive me nuts!
Chiming in on the hair stuff: strangely my hair seems to already be growing back a little bit. I didn’t think that would happen until I was weeks past treatment. The bottom halves of my legs are definitely stubbly and head stubble seems to be slightly longer is well.. especially the gray hairs for some reason, figures! lol My lashes and brows are definitely thinning out though. I’m hoping to do microblading at some point. I wanted to get it done even before I knew I would have to have chemo.
Oh and no period since April 10 so ??? Does it sometimes come back after chemo? I’m 43 so I was premenopausal anyway going into this so maybe this got it going a little earlier. Not complaining though!
Hope everyone has a great day. You ladies rock! 💕
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RAY RAH Quiltingnut!! Awesome news!!!
Becca--I do think I'm gonna squeak by. I thought I'd read about women losing hair after like 2-3 (I have #3 tomorrow), and *great* that it won't all come out at once.
Steph74--yes rads are five days a week, but once you're set up, they are *so* quick--literally like 10 minutes. I almost feel like you could bring kids with you if they're not too young. Might be worth asking about?
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