Oct 21, 2019 10:07AM - edited Oct 22, 2019 07:42PM by GoMama
Regimens, side effects, and support from others going through chemo.
Posted on: Jul 26, 2019 04:00PM - edited Jul 26, 2019 08:58PM by in2earth
I was interested in starting a group for us starting chemotherapy August 2019. If there is already a group you can point me in the right direction :)
My name is Kaycee, I'm 28 and I live in Florida. i'm a seasonal resort worker so I call Alaska & Idaho most the time and I also am a holistic nutritionist.
I just had my port placed and am getting more nervous about it all, but have found all these groups so helpful & hope to become buddies with some of you while we go through this process.
So how about a quick intro of yourself ! Anything like age, location, goals, fears, and jobs. I would love to learn more about you all.
My instagram is in2earth if anyone wants to add me there too !
Posts 271 - 300 (300 total)
Oct 21, 2019 10:07AM - edited Oct 22, 2019 07:42PM by GoMama
Oct 21, 2019 08:00PM OnTarget wrote:
Good luck Toadism!
Oct 23, 2019 12:10AM Flowerkid wrote:
Thanks so much Toadism for the info about what to purchase for eyebrows. I bought Maybelline pencil based on some people's suggestions but what you suggested makes more sense. Going tomorrow to Ulta!
Congrats on last chemo! Must have felt good
Oct 25, 2019 11:30AM HouseOfKards wrote:
I was supposed to start my first dose dense Taxol yesterday. It did not go as planned. I had a major allergic reaction in less than a minute after the drip started. My face got flushed and I got super warm. My ears started throbbing and my heart started beating hard. I could breathe ok and my throat didn't close up, but they rushed over to pump me with Benadryl and a steroid. I think they gave me so much Benadryl that I passed out. My husband said I was out for 2-3 minutes. I awoke with 5 nurses standing in my face. One was rubbing my chest, one was rubbing my legs and they were calling my name. One nurse said, "Please keep your eyes open." I didn't realize they were closed! I nearly got sick a few times, but ultimately didn't. They estimate I only received about 6cc (about two TEASPOONS) of the drug before I flagged the nurse down. They'd never seen such a fast and severe reaction. Great.
Because I passed out, they had to take me to the Emergency Room for observation. I even had my first ambulance ride! I was there about an hour and then went home.
Feeling totally fine today. Next Thursday, I'll start dose dense Abraxane. It's the same as Taxol, but instead the primary drug (Paclitaxel) is attached to a protein instead of a preservative. It's the preservative that causes the reaction. Good news is that Abraxane is a 30-minute infusion vs. the 3-hour Taxol. No Benadryl or steroids required with the Abraxane. I asked if I could get that done in the drive-thru. : ) Same side effects and still reportedly "easier" than the AC I've completed. MO says it's actually kind of cruel that Abraxane isn't the go-to for Paciltaxel, but I'm guessing it must be $$$, so patients have to fail the "Taxol test" like I did before they offer Abraxane.
It's kind of nice to have an extra week "off." Also gives my body more time to work the red devil out and get a little stronger to start the Abraxane. I'm bummed because it pushes my schedule back a week and I'd planned a bunch of things in November around that schedule, but that's ok. We've gotta be flexible on this journey, don't we?
Oct 25, 2019 02:20PM OnTarget wrote:
HouseofKards- Holy cow! That sounds like an awful experience! The passed out part sounds particularly scary!
I'm so glad that they have an easy alternative though, and while it messes up some sort term plans at least it doesn't mean you can't have that type of chemo at all! I hope you enjoy your extra week and good luck with the Abraxane!
You have a great attitude about the whole thing which is awesome!
Oct 26, 2019 11:49AM elc75 wrote:
HouseofKards - wow! I’m glad everything turned out ok! That would have been frightening to go through.
I’m an perplexed by how so much is based on cost rather than what is truly best for the patient. This experience has been very eye opening for me every time I receive an insurance claims statement!
Oct 26, 2019 12:38PM Toadism wrote:
Houseofkards hope you are feeling much better. Scary to say the least
. And ELC75 it’s ashamed the insurance companies have so much control over our healthcare.
All you ladies stay strong. I’ve completed my infusions for now, praying to never see that again. Still struggling with extreme weakness but I know it will get better! There are better days ahead, although it seems like they can’t get here fast enough. Next month, five weeks of radiation!! 😬 !!!
Oct 26, 2019 04:15PM in2earth wrote:
@houseofkards that is so scary oh my gosh!! I'm so sorry you went through all that. I hope this new one works much better even with the schedule changes.
@toadism congrats !! I'm happy for you to have finished ! You will crush radiation next :)
For me I'm hanging in there. Just did my 3rd Taxol. I have hot flashes, losing eyebrows, low appetite, finger numbness, and just overall blah. My last chemo is in 10 days !
I'm just really scared for the future of monitoring this as I have a high onctype test score, 66. I think they want my ovaries out as well....Just taking it one step at a time. We have all come SO far since August.
Oct 26, 2019 06:33PM OnTarget wrote:
in2earth- I agree on the monitoring, my MO feels it is not adequate, but they are limited by insurance. It is scary! My MO had mentioned ovaries out to me in a few years too, I guess I'll see how I feel about it then.
Oct 28, 2019 11:08AM GoMama wrote:
HouseofKards, I had a less severe allergic reaction (Taxotere) and was switched to Abraxane. They didn't tell me until I started that the schedule would be different. With Taxotere, I had the infusion then three weeks off. With Abraxane, I have three consecutive weekly infusions, then one week off. It is shorter but adding in all the travel time for three visits to the infusion center makes it actually much longer. I hope you do well with the Abraxane. From some reading I've done, it does appear Abraxane is the more expensive option (also has a few other risks due to the use of human protein), and that's why insurance has to be convinced that it's necessary.
Btw, I started round two of Abraxane on Thursday. After next week's infusion (11/7), I'll have completed four rounds of chemo. My MO says we'll evaluate my nerve damage symptoms (a bit of numbness in the feet, some manual dexterity issues) and decide if chemo should continue. My allergic reaction seems to be related to the Cytoxan, since I didn't develop a rash the weeks I had only Abraxane. MO wants me to have two more rounds of just Abraxane. My recurrence rate after four cycles of chemo is less than 9 percent in 9 years. I don't know what two more rounds of chemo would bring it down to, that's another thing we'll discuss in two weeks.
Nov 4, 2019 08:49AM GoMama wrote:
I never expected to say this, but I want my nose hairs back! My nose has been running nonstop for weeks and I'm soooooo fed up with it!
Also I want my body back, without PowerPort and catheter.
For anyone who had a mastectomy--how's the pain? More than four months after surgery, the occasional twinges have become frequent aches along and below the scar.
Nov 4, 2019 06:42PM elc75 wrote:
I just wanted to check in and see how everyone is doing. I just finished my 4th Taxol today so 8 more to go. It’s definitely much more manageable for me than AC so I’m happy for that. Not on any nausea meds thankfully. It just seems like chemo is never going to end!
After this is surgery which I’m a little nervous about because I’ve never had a major surgery before. And we were always planning a mastectomy but today my NP mentioned the possibility of a lumpectomy since the tumor has gotten so much smaller. This was never even onmy radar - I just accepted that it would be a mastectomy. I know I need to get another scan and discuss with my surgeon so her opinion may be to stick with the same plan...we’ll see I guess!
Hope everyone has a good week with minimal SE’s
Nov 5, 2019 02:35PM Autumngal24 wrote:
Hi all. I haven't checked in lately.
in2earth - Congrats on your last chemo!
GoMama - Same with constant runny nose. I'm so over it as well. I'm told that it will likely continue for me with Herceptin even after chemo is done. Oh the joys!
elec75 - Glad that the Taxol is treating you better. Lumpectomy being on the table is a good option. But you would then have to do radiation. I still chose this path, because I wanted to keep my breast, and my tumor was in a location that was optimal for a lumpectomy (6:30 position). Recovery was also minimal, and not having to worry about reconstruction appealed to me.
Flowerkid - I'm heading into round 5 of 6 next week too. We're so close!
So the first 3 rounds of TCH...not too bad. Everything seemed so manageable. After this 4th round though, some new side effects popped up. Peripheral neuropathy has started. My fingers hurt even to type this. They're very sensitive to warm things as well. My toes mostly feel numb. I'll be talking to MO next week about it. I know that if it gets too much worse they might change my dosage for the last 2 rounds. Also, I had nausea this time, and never had any with the first 3 rounds. So that has been fun. It seems like my taste buds are not bouncing back this cycle either. Usually in the second week, things start tasting normal again, but I just have this constant bad taste in my mouth lately. Ugh.
Anyone else putting on a little bit of weight? It's not a lot of lbs for me, but I have had several pairs of pants just not fit anymore. I'm still exercising daily. So, I'm assuming it's steroids and just chemo in general.
Nov 5, 2019 06:00PM Ezzie wrote:
LOL - yes I have put on weight. About 10 to 12 lb. And yes I wish I had my nose hairs back. In fact I want all my hair back. I'm still not over the shock of seeing my bald self in the mirror. And in the realm of too much information, I find that when I pee, the pee goes everywhere. I never knew that my pubic hair serve such a purpose.
I'm glad that everyone is getting along okay with their treatments. Who ever mentioned the neuropathy oh, yes after my 4th TC the neuropathy and the breathlessness got much worse. But fortunately that was my last chemo.
Next week I have surgery to replace my expander which became infected after the mastectomy. Oddly I'm kind of looking forward to it mainly because it represents the second to last step in this process for me. Fingers crossed.
@elc75 - good luck with making your decision about a lumpectomy. I didn't find the mastectomy surgery and Recovery to be as difficult as I thought it might be. But the psychological aspect was about what I expected. Now 5 months later, after chemo and and all the challenges of having this disease, the mastectomy just seems like one of the things that's happened and not as big a deal as it did before.
Nov 12, 2019 09:26AM - edited Nov 12, 2019 09:27AM by GoMama
Ezzie OMG yes, the peeing! Especially during that 48-hour post-chemo period (flush twice!), when I'm basically a walking hazmat site, I clean the seat with a Clorox wipe every time I go.
It's crazy how much hairlessness changes things! I also noticed that with almost all my eyelashes gone, if my eyes water, the tears go absolutely everywhere.
I'm still in limbo after four cycles. The neuropathy is a little worse, but the MO wants me to get two more cycles in if I can tolerate it. They did give me an rx to protect against nerve damage, but never any guarantees. I see the MO in a week, and I hope I'll find out then what's going on.
And I've gained about 15 pounds, though I'm up and down 5 of those quite often.
Nov 12, 2019 05:38PM OnTarget wrote:
Ezzie- Good luck on your TE replacement!
GoMama- I hope you are able to tolerate those last 2 cycles! Thinking positive thoughts!
AutumnGal- I'm glad that things are going pretty well for you!
Flowerkid- Good luck on your last chemo! Woot!
Toadism- I hope that your strength is going back up!
I'm 5 weeks out from my last chemo and I had my exchange surgery last week. Everything is going fine, although my franken-foobs are unappealing. I hope they shape up! Before TE's I wanted "natural" boobs, and after having TE's I was more like "bring on the stripper boobs". Regrettably, I didn't end up with stripper boobs. More like pancakes.
I can walk up stairs without feeling like I'm having a heart attack now, so that is great!
I think I still have some minor taste issues. I can mostly taste things, but a few things taste weird still (wine). I'm hoping that changes because I do enjoy a little wine!
I still have a strange soreness in my muscles, particularly in my legs. They are sore like I've exercised every single day, regardless of what I've done the day before. The MO says give it time.
I had gained about 13 lbs on chemo, and I've lost 4 of them so far, and that makes me happy. It was a lot easier when I had no appetite from the cancer. LOL.
Keep it up ladies!
Nov 17, 2019 09:07PM HeartShapedBox wrote:
Hey everyone, I haven't checked in for awhile. I went downhill quite a bit after chemo #3, and the nonstop perjeta diarrhea had me in bad shape (had to go in for IV hydration so many times...), so it was cut from my last 2 chemos. I was in a pretty low spot both physically and mentally, feeling so bad and knowing I was only halfway done with this crap. "Chemopause" has left me with brutal night sweats and insomnia every night, so I never feel rested, and I've had some troubling new neuropathy symptoms lately even though glutamine had mostly been holding it at bay.
I have my FINAL chemo of TCH (no more P!!!) Monday morning, and I'm feeling relieved for the milestone but also nervous about how my body will handle it. I'm super anemic and my red blood cell count plummeted 2 months ago, and the fatigue is just unreal. I've been incredibly weak, even during my "good week", and it's demoralizing to feel this weak and useless. Trying to do the simplest task like laundry makes my arms feel like I've been painting ceilings and lifting weights all day. I'm usually a very active, strong, independent person, but now the smallest exertion leaves me out of breath, panting, with muscle sensation that feels like I'm at the tail end dribbles of energy and strength like I ran a marathon. My understanding is this new level of fatigue and weakness is because my blood literally can't carry enough oxygen to muscles, organs and brain (the red blood cell's job). My MO wants me to push thru this last chemo even though my red blood cell numbers were low enough last time to delay/call it off; I'm SO close to being done with the worst of it! But it still feels hard to see the finish line from here. I worry that I'll have residual cancer after this neoadjuvant chemo and that my MO will want to push even MORE chemo on me after surgery. I worry about what my lymph nodes will look like and what invasive axillary dissection will mean for my future physical abilities, since my job and my lifestyle depend on my upper body strength and ability. I worry that radiation is probably a 95% given for me regardless. I worry that even though I've been strong and pushing myself thru thus, I'll snap and crumble mentally and emotionally. I just want to be DONE with this!
Nov 17, 2019 09:48PM OnTarget wrote:
Heartshapedbox, what you are going through sounds awful, I'm so sorry! Such a tough time physically, plus the worries that are so natural.
I hope that you are able to finish up and that your strength comes back quickly!!
I'm thinking of you and rooting for you!!
Nov 19, 2019 07:19PM Toadism wrote:
Heartshapedbox I know it’s a long tough road but you are stronger than you know. You are a warrior!!!! Praying your strength comes back and for better days ahead
Nov 21, 2019 11:09AM GoMama wrote:
My MO still wants at least one, preferably two more cycles if I can tolerate it. She did give me the holiday off, LOL, so cycle 5 begins December 3. I was so looking forward to being finished with this. I will just be getting Abraxane, still in three consecutive weekly doses. It should be better without the Cytoxan. I'll see her again after cycle 5, and if the nerve damage hasn't progressed, cycle 6 should begin around Jan. 1.
To combat the numbness, which has spread from my smaller toes to all toes and the balls of my feet, they prescribed Gabapentin (Neurontin) 300 mg daily. I'm taking it at night bc I was falling asleep from it during the day. She also wants me to take alpha-lipoic acid, 400 mg daily, with meals (2 daily doses of 200 mg each).
Dec 2, 2019 08:00PM in2earth wrote:
Wow I'm almost a month post final chemo. I have been feeling really strange. I feel like I was so positive at the beginning and now I'm just like whatever.... I'm going for my port removal soon & will be picking up tamoxifen. I'm nervous mostly about tamoxifen. I've already been having such bad hot flashes I hope the tamoxifen doesn't make things worse. Anyways sorry to be down, but I know you all will understand. Hope everyone is okay at whatever part of the journey they are a
Dec 3, 2019 06:28AM Flowerkid wrote:
heartshaped box - true, I don't know you, but you can do this!! Wishing you strength and some peace!! You haven't shared how you are doing now, a few weeks post last chemo. Please let us know how you are.
I have similar concerns - TODAY is my last day of neoadjuvant chemo and I don't feel as excited as everyone thinks I should be - since I am anxious about upcoming surgery (incl right mastectomy and lymph nodes). To me , that's a bigger deal. I may or may not ring the bell after chemo today!
Hopefully some Ativan l, meditation an dfriends will get me through surgery. And I think I need to start having specific conversation s with women about mastectomy, so I really have an idea of what's coming down the pike .
In2Earth - you have indeed been so positive; I am so sure you can get through the tamaxifen piece. Sending you vibes of strength and support! Hang in there.
Dec 3, 2019 10:01PM OnTarget wrote:
Flowerkid- ring that bell!! You have achieved something!!
I hate to say that the mastectomy is easy because I like to assume things are worse than they are so I'm pleasantly surprised. It isn't easy, but it is not too bad either. I was off narcotics in a few days. There was constant low grade pain, and occasional sharp pains, but totally do-able.
I've had menstrual cramps that hurt worse (they were pretty bad).
In2earth- sorry you are down! Hopefully the hot flashes will calm down. Mine did. I hope that tamoxifen treats you well. I am on ovarian suppression plus Femara and so far it is OK other than the hot flashes. My hot flashes on the meds are not worse than my chemo ones (I was off OS for chemo). I like to complain, but really they are improving some- I don't wake up 4-6 times a night now. I'd say it is 2-3?
It is daunting to think about more SEs. I'm hopeful for all of us that we have as little SEs as possible! Fingers are crossed!!
Gomama- keep it up and stay strong! The end of chemo is in sight!!
Dec 5, 2019 03:00AM HeartShapedBox wrote:
Thanks for the encouraging words everyone- it's such a comfort checking in here, and seeing everyone having ups and downs and fears, but making it through everything, slowly but surely.
I'm feeling a little better with my final neoadjivant chemo 2+ weeks in the rearview. The fatigue is still bad but i can walk a few blocks now, even if i feel totally spent after. Strangely, as the worst side effects start to diminsh, I find myself more bothered about the other "little" chronic things... the menopause symptoms, the raw runny bloody nose, and the blurry goopy puffy painful eyes (blepharitis I think). They seem like relatively minor complaints at this point, after the absolutely miserable lows of chemo the past couple months. So why are they suddenly so irritating now, and kind of getting me down? It makes me feel so whiny and ungrateful, especially knowing some of you are really struggling with things like neuropathy. (Wishes for healing and recovery for all of you who are struggling with aide effects!)
I empathize with you in2earth and Flowerkid; I thought I'd feel more relief at this point, but I feel just kind of, meh. Part of it I think is I still have so much road ahead- continuing the Herceptin infusions til July (you too Flowerkid?), upcoming surgery at the end of the month (mastectomy and axillary dissection), and I just found out I'm definitely getting 5 weeks of daily radiation in a few months. And then they'll want me on tamoxifen after that, which I'm super leery of- please keep us updated about how that goes for you, in2earth, and I hope your hope and bright spirits return soon!
Almost done, GoMama! I'm glad you get a break for the holidays, even if it extends chemo out a bit longer. Those of you that had the finish line get pulled out from under you by having to switch gears on chemo protocol, that has to be frustrating!
OnTarget I've been pretty nervous about surgery recovery, so that's encouraging to hear that it wasn't as bad as you feared? I guess like everything, we just have to grit our teeth and get through the pain. My surgeon told me they'll be discharging me the day of surgery, which alarmed be a bit... How were the first 24/48 hours for you? Doable to just be at home, with pain pills?
Dec 5, 2019 06:08PM Toadism wrote:
heartshaped box I had a skin sparring mastectomy on my left breast. I didn’t have pain associated with the MX. I took a half of a pain pill to sleep a couple of times but other than that it was not bad at all. The drain tubes were the worst of it all. I found out that when the implant is out in I will have those little friends again. 😩. I had to sleep halfway sitting up for about three months because where the expander is felt weird to me. So that was the only way I was comfortable. LOTS of pillows. I’m now on my first week of radiation and so far the worst part is the drive to get there. Tamoxifen in late January so we will see how that goes. Many wishes to you all for brighter days ahead
Dec 5, 2019 11:49PM OnTarget wrote:
Heartshaped- I have to admit that I was in a lot of pain the day of surgery, I can't imagine going home.
My surgery started at 730am or so, and I wasn't out of recovery until 9pm. It took a long time for my blood pressure to settle, I think bc I was in pain. Once they switched me from Oxy to Tramadol I did better.
No tears, just very very uncomfortable.
The day after is a bit hazy, but I was fine to go home. I took Tramadol the day after I believe and within a day or two, I switched to Ibuprofen/Tylenol. I only had high pain right after surgery.
Dec 7, 2019 10:39PM - edited Dec 7, 2019 10:47PM by GoMama
heartshapedbox going home the same day as major surgery sounds irresponsible on the part of the hospital if you're having a mastectomy. I was a few hours in recovery and on pain meds all night. They monitored me closely. I hope they reconsider.
I had a setback. I began cycle 5 on Tuesday with 1 of 3 Abraxane doses. Wednesday evening I had a fever and was told to go to ER. My temp was 101.3. I spent the night in ER getting blood tests, ultrasounds, etc. The blood cultures are negative. They settled on iv antibiotics for suspected skin infection. They admitted me but had no beds and sent me to another hospital, where I spent another night and day. I convinced the doctor to release me Friday evening. I have to see someone in oncology before my next scheduled treatment.
Regarding the low feelings now: it takes a lot of energy to keep going every day. We had more energy at the start of this journey, and I feel every treatment is sucking a little more out of me. It's going to take a long time to recharge the batteries. None of us had any idea how much it would take out of us. That realization I think is contributing to my low feelings, as is frustration with the setbacks.
Dec 7, 2019 11:09PM HangryMama wrote:
Hello all, I just joined the community, and this looked like a great group to join. I was diagnosed at age 41 in July of this year with IDC, also tested positive for the BRCA1 gene mutation. I started neoadjuvant chemo on August 12th. I have completed 4 dose dense treatments of AC every two weeks, and last week I finished number 9 of 12 weekly Taxol treatments. Last one should be the week of Christmas woohoo! The taxol seemed easier than the AC at first but having issues with CIPN in my hands and feet ,so they lowered the dose. Can't wait to chat with you all and hear how everyone is doing. So glad to have some folks now who can relate to things I am going through.
Dec 8, 2019 12:07PM Moderators wrote:
Welcome to the BCO community. We are so glad that you reached out to share your story with our members. We hope that you find support here and a connection with others that benefits you and your recovery. Please let us know if there is anything we can do to be of help.