Starting chemo June 2021
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Goodmorning everyone!
I have a question. And I don’t know if this is where to ask it or not. But I thought I would start here.
I'm currently having chemo before surgery. So I'm the middle of chemo my MO said he was going to do another CT. I'm just trying to figure out why. My first CT was clean and I'm having very good response to chemo. And my surgeon wants another breast MRI. Which should cover most of what the CT would. I'm confused. They were the ones that wanted chemo first. Do they think it spread during chemo and that is why the CT?. I am worried. Should I be??
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Jumping in here a little late but I just joined yesterday. I started chemo back in June and am currently on day 9 after my 3rd infusion with 3 more to go. I go every 3 weeks and my last one is scheduled for Sept 29 which cannot come soon enough. I have really struggled with nausea and am now down 20 lbs from when I found the lump in May. The first 10 was from the stress prior to chemo and I've lost steadily each round. I was 39, healthy and active prior to this and now I feel weak and pitiful. I have chemo on Wednesdays and Thursday afternoons the nausea hits. They changed up my meds this past cycle so I was at least not vomiting which was an improvement but the new meds made me insanely tired but not really sleepy so I just laid around like a zombie until Sunday when I attempted a walk and only made it 4 houses down before having to turn back. The majority of the nausea is gone by day 4 or 5 but then I get this terrible pain in my whole GI system and everything tastes like chemicals, even water. I am currently in the horrible tasting food phase which is lasting longer this time than last which make eating and drinking anything very difficult. Does anyone else have this? Things I love taste horrible and I can't get them down. Or I will eat something in the morning and its fine but by then if I try to eat it again later it tastes horrible, so even if I find something I think will work to eat then it changes again Even water tastes bad and I can't think of anything I can drink that seems appealing. Last cycle I ended up with a UTI because I got so dehydrated.
First cycle I bounced back on day 7 and was back to normal, second cycle it was day 8 and this cycle I am now day 9 and still not bouncing. Really looking forward to the moment where I feel like myself again as this is mentally kicking my butt and I can't imagine going through this 3 more times.
I am wondering if anyone is using THC to help ease chemo side effects? I got the oil and am considering giving it a try. I've been taking CBD oil for a few months now as it helped me to get some sleep during the insane stress of the early diagnosis phase.
@loverofjesus - have you had any symptoms that would lead them to believe that the cancer has spread during chemo? I would be feeling the same as you but it may just be something routine that your particular doctor does as standard at this point in the process. Easier said than done but I would try not to get too stressed about it. Having said that I have a totally routine MRI next week to check the tumor midway through chemo and I can feel that it has shrunken and the dr says that they can feel that it has shrunken and I am still super stressed that somehow we all just think it has shrunken and I am going to get some new bad news that I haven't anticipated.
Hang in there. I am so sorry that you are all here going through this as well but getting comfort from the fact that I am not alone.
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Carlsoda - so excited for your last treatment! Yay!! And adorable puppy. I love the idea of bringing or starting something new at the end of this... I am gonna have a think on that.
LoJ - I have not had a CT scan, so not familiar with procedures. I would ask your doctors, but I am guessing they are just trying to stay on top of things? I feel like screening can't be bad?
BTeich - welcome and sorry you are here. My schedule is a little different than yours, but I've had much of the same side effects. I only experience vomiting on the first day after treatment and I am able to eat limited by use of the compazine and zofran. The compazine does make me sleepy. I have not lost a lot of weight. I make up for it when I feel better I guess. I also have experienced similar things with taste and yes, I have been a water drinker for years, but it's hard. Coconut water is helping, and since it's also very hydrating. I am getting frustrated by the taste. Jolly ranchers actually help bcz of being so sour and tangy, but it only helps while you are eating it or shortly after. I experienced something similar where after my 2nd treatment it took me an extra day to feel fully better than the 1st, which only left 2 days until my 3rd. I actually think I may be a little better this 3rd round, but will see if I feel better by Monday or Tuesday.
eta - I just noticed you said about GI pain - are you taking zofran? If so are you taking stool softener? it's a must bcz zofran causes terrible constipation. I don't think I am going to take it next round bcz past 2 times were not pleasant and I feel like that messed me up more than the chemo itself.
Have any of you gone to a concert or been in a crowd? We have tickets for Friday night and I am determined to go, it's a small venue and we just want to see the opening act, so probably just an hour. I am trying to not let my anxiety of being around ppl (covid) get to me too much. I am going to take ativan if i need it! But then I also am hoping I will be ok and not pick up any viruses, wearing my mask of course. I feel like I need to live a little and I really want my SO to have a night out.
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Carlsoda - Congratulations on last chemo!!!!!! I'm so very happy for you!
BTeich - in week 2 of my treatment cycles I've been using very small dose (3mg) THC/CBD a couple hours before bed, it helps me sleep, and I don't wake up groggy like with the prescription sleep meds. Week 1 I'm still really nauseous so I stick with Ativan instead. My MO is fine with me using it, I'm only conservative about really small doses because I know that what most people find recreational, just makes me paranoid and uncomfortable. So I haven't taken high enough doses of THC to affect nausea or appetite. Also wanted to note that my first couple cycles I had awful gut pain which has mostly gone away now that I'm taking 20mg famotidine twice a day.
LoJ - I wouldn't worry about them wanting a CT, some tumors show up better on one imaging device than another, and I imagine it could change as your tumor shrinks and they just want to be sure to get good pictures. But it never hurts to call or email your Dr office asking why they want it! Personally, I'm like "GIVE ME ALL THE SCANS" because I can't wait to get confirmation that my tumor is shrinking. I feel it shrinking, but want the hard numbers!
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Bteich, I'm from the May group, but jump around subs since we are all pretty much going through the same things.
We have the same type of BC and I just passed session 5 of 6 TCHP. I've been experimenting with side effects the whole time, and taste/texture are at the top of my list. What I've found is that drinking a lot of water and getting the chemo out as much as possible the day prior to, the day of and the couple of days immediately after helped me immensely. I was having the same side effects as you until I tried drinking at least 120 to 140 ounces of water or liquids than the usual 96 ounces they recommend. During the first three sessions, I only had about four to six days when taste was slightly okay. These past two sessions I had a good 8 days, and then 11 days.
I also found that any time I started getting that weird taste in my mouth, I would brush my tongue all over with water and kosher salt. I think this helps during those days when taste and textures is horrible.
Also, and this is completely psychological, I stopped eating snacks during the taxotere and carboplatin part of the infusions. They give me the HP first. I think by session 3 my body started thinking food was bad and my brain was so messed up for a couple of weeks after. It was like fighting my psyche just to get my mouth to chew and swallow.
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how many of you on here are doing chemo before surgery? Am I the only one??
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@btwnstars - I'm not taking zofran. I am on ondansatron and dexamethasone for the nausea and the new one that they gave me which seems to be working is emend which is also for nausea. They haven't offered me anything for sleep.
@AlwaysMeC - You're almost there!! Good for you. Thanks for the water recommendation. I really need to up my intake as much as I can. This is doable until the nausea sets in on the afternoon of day 2 so I should be able to get most of it flushed out by then. I shoot for a few litres but maybe will try for more like 3 or 4. I have stopped snacking during chemo after the first time as I just get so grossed out about what is coming that I can't eat until I leave.
@LoJ - I am doing chemo before surgery as well. My surgery should be in late October about 4 weeks after my last round of chemo. I was initially wanting surgery asap but I am glad to have it this way now as it gave me time to really consider my surgery options, lets me get the horrid chemo out of the way first (I am actually excited about surgery because it means I'll be through this mess), and I can also feel that my tumor has shrunk considerably so that makes me feel like it must be working.
@mle - thanks for the dose advice re the THC/CBD. I was planning to start around 2-3 and see what happens. Once I am back to normal for a bit I am going to try it out one day before my next cycle just to see how it effects me. I was too scared to take it when I was actually nauseous this time as I was afraid I would be high and throwing up everywhere so I just want to see how much if effects me before I use it for real for symptoms.
Anyone taking Melatonin or get any guidance from Oncologist about it? I've gotten mixed advice about it.
Is anyone else doing the Grastofil injections to help their white blood cell count? I was on 7 injections but they have upped it to 8 as my white blood count has been in the toilet at less than 1.2 before both my second and third cycle. I have been feeling pretty good by the time I'm about to go again so I was surprised that it was so bad but was a bit of a wake up call as to how careful I need to be about germs while I am going through this. I've got 2 more to go for this cycle and then I will be in the nice phase at the end where I'm not taking pills or injecting myself every night and I get to feel normal for a bit.
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Not to worry. MRIs show surgeons details on location of tumors and inflammation. It helps them navigate the breast tissue and inflammation changes.
A pet scan shows metabolic and lymphatic areas which may have changed for the better. I actually am going to ask for another pet scan to see if the chemo has shrunken some nodes.
I have no medical training but I have had a lot of MRIs
and CTs and they are a good resource to track changes and pet scans; ct scans and MRIs illuminate different things for different medical specialists.
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Oh Carlsoda,
What a wonderful time to get a new puppy! I'm so excited that it's your last treatment as well, woohoo! I also have two fur babies. A lab and an English setter. The Lab is "mine" all 80 pounds of him and the Setter is my husband's bird dog. I've noticed that since I've been diagnosed and am going through treatment, that she will come and sit with me more than she would prior. Strange, but they seem to know. She's a busy girl, never sits still, but she will come and take naps with me now. They're such good company:-)
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LoJ - I’m also doing chemo before surgery. Had my mid-chemo check in appointment with the surgeon yesterday, currently hoping to get a surgery date set for the second half of October (last chemo sept 24). MRI scheduled for end of chemo so she knows what she’s looking at! The nurses at my infusion center said it is becoming more common to do chemo then surgery, instead of surgery first… but I have no idea how widespread that is beyond my cancer center.
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BTeich - Do they give you premeds before infusion? Odansatron is the same as zofran. Make sure you let them know what you are experiencing because there may be a solution. The suggestion about drinking and flushing it out is good too, I have to remember that. I feel like I get tired of drinking water.
The fatigue has def gotten to me more, taking lots more naps and going to bed early. Finally starting to turn the corner a bit more, but I know I still won't feel best until Tues or Wed, then Thurs start all over again! ugh.
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Hello ladies. I hope everyone is having a great weekend!
I had my last AC infusion on Wednesday. I have breezed through all the others. But this one has mad me feel bad. Not awful because I’m still up and doing, but just bad. Like I’ve been nauseous a little which I was never before and when the steroids wore off this time it kicked my tail. All I wanted to do is sleep. But it could also be that my daughter started back to school this week and I’m getting up at 6am and not going to bed till 11. Ugh.
I’m doing pretty good today just want to watch tv and do nothing.
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hi ladies! I’m just checking in and feeling the dread for infusion #3 on Monday. Last one was much harder than the first one. I really hate this. I know everyone does. If it feels good to say that. I hate this! I’m so burned out from drs appointments. Mine and my kids. My middle child has a couple of conditions that require specialist. It gets to be a lot. Can’t wait for this part to be over
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Hi Monarch - I just had my 4th and last and actually doing a little better this time. I think hydration is helping. I had 2 bags of saline during my infusion and drinking ensure clear protein and sparkling ice. Maybe try that - oh and the Prilosec- start tomorrow if you’ve been having bad heartburn!. Good luck on Monday!
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Thanks so much all for the details. I feel tested out. In the last few weeks i had an MRI, Ultrasound, CT Scan and Bone Scan. When a couple of you said water drinking was not tolerable, I thought of the two bottles of water one must drink before a cat scan. I hope it is not a gag reflex not letting you swallow? I am not crossing that bridge till i get their, but i do have prescribed:
Famotidine-Heartburn 1 tablet twice a day
Ondansetron Hydrochloride 8 mg tablet- 1 every 8 hours as needed for nausea and vomiting
ProchlorperaZine1 tablet by mouth every 6 hours as needed foe nausea and vomiting.
Also one OTC I am buying tomorrow.
I am scheduled to start Friday the 13th. I must say that i rarely every through up. I do not look forward to nausea or heartburn either. If any of my 3 pills actually work, I will be in heaven.
Carlsoda- What is clear protein and sparkling ice?
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K-Gobby: ensure has a clear protein drink instead of the whey based - milk products do not taste good to me and Sparkling Ice is a fizzy water drink with some extra vitamins. It goes down well and helps me stay hydrated!
Wishing you the best on Friday! Go get it done and soon you’ll be on the other side!!
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Carlsoda,
Thank you. I want to have different drinks on hand, so i do not get dehydrated. A few have said even water tastes bad, so I want to prepare.
I did get a NEGATIVE on my up the nose Covid test today, so that is good.
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so had my third infusion yesterday. My red blood cell counts are all low but not horribly low due to these long heavy periods. Right now they don’t want to do anything. Just get through my last treatment in three weeks then we will talk about ovarian suppression along with tamoxifen
I have a question about eyebrows. While I’m mostly bald. I prob have 10 percent of my hair. It’s shaved so I look bald. But I still have half of my eyebrows and eyelashes. What’s going on with everyone else’s eyebrows and eyelashes? It was so awful for my sister when she had none. Like literally none. I was dreading that. But they are hanging on0 -
Monarch,
I got my eyebrows microbladed. (With my MO blessing) and I still have eyebrows. And my eyelashes are still pretty good. Not that they were amazing before chemo. But I bought Latisse for them. So far they are still there. I saw a thread about the microblading and Latisse on here is why I did it. So while most of my hair is gone, I may have 15% of it , I still have eyebrows and eyelashes
Hugs to you
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Ok you guys. The 4th AC kicked my tail! Ugh. I wasn’t sick and I don’t know if it was the steroids or the AC but the 3-5 days I had zero energy. I’m better today. But still pretty wiped. I am getting up at 615 now every morning to take my daughter to school and I have not been sleeping the greatest so I’m sort of hoping it’s just a combination of it all and very much praying this does not happen through Taxol.
Question though. Does chemo make you smell everything like ten times stronger? Like my dogs’ food. Makes me turn green. Lol. It smells awful. And I never noticed it that much before. I still love all my candles and Scentsy warmers thank goodness. But garlic, dog food, and anything like that stinks bad. Kind of like being pregnant when I could smell anything within 10 miles.
Hope you all have a wonderful day and night!!!
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monarch - I still have about 15% of hair, all my eye lashes and most of my eyebrows- the ends are getting thin though.
Lover - yes the smells are awful - really turns me off. Cooking is the worse.
This round has been the worse - more nausea so taking lots of drugs and every tastes gross except milk products. Had a culvers concrete with my supper and it went down well. Energy has been awful but I think I am starting to finally feel a little better!
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Carlsoda,
Yes!! And my taste is soooo off! I made one of my favorite meals tonight. And the only things that tasted halfway decent was the chicken and rice. I even had potatoes and gravy which I usually love but it tasted like cardboard. And I made turnip greens thinking it would be healthy. I could not eat them they had a horrible taste. And I usually love them. I wanted to cry. Ugh. I’ll be so glad when chemo is done. I don’t even feel like I dread surgery as much as I hate chemo.
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Lover - for me chemo has been worse than the surgery. Mind you I just had a single mastectomy with no reconstruction. This is different though with the bad day/week and slowly are worse each time. I think (fingers crossed) I am turning the corner. Didn’tneed a nap after work today which is a good sign!
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I had my port put in at 11am this morning. My sister took me and snapped a photo in the recovery room. I have NEVER had any surgery. Never been wheeled around and never been taken out in a wheel chair and neely bucked in by my "diver", Guillermo form City of Hope.
Might i say that the nurse in the get ready area was an Emergency room nurse for 21 years before she got her. She is very into details collecting blood, putting in the IV in and all that. The gown was another delight. Modesty really? Down from the shoulds but pulled down under my boobs? At least it felt to be there. No pain, medication works. Had a small oxygen tube that had that plastic smell. I just felt the sensation of everything he did. Noting pushes here and there and of course when i got home, it was interesting to read how it is put in. I did not know it is in a vein by the heart? There is so much i do not know. One thing for sure. They take your blood a whole lot. I will surely love to see the panel after the first Chemo infusion on Friday. I am participating in a study at the COH that covers nausea and feeling bad through the first few days and a bit more. Tracking through a few thousand people what works and genetically how it works. It is a research hospital, so why not!
Right now it feel tight and none stretchable, so tomorrow who knows. I will wait till i get there and have the ibuprofen handy. All my best to all of you as you work through the chemo effects and surgeries. It is amaing how many of us are on this journey.
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No changes on eyebrows/eyelashes for me yet, but I feel it coming. I've read that it happens later. My hair is still fuzzy, but I have been getting a drier (itchy) scalp and I think those few hairs may come out too.
I have super sensitive smell, and yes can smell the cat food from rooms away. I read early on not to let anyone cook anything too pungent or even any type of frying/oil smell is bad. So I try to avoid that. I also have tried to avoid favorite foods/meals and stuff knowing that it will taste like crap!
I literally cannot wait for the sigh of relief in my body when it's all over. I feel like i am walking around just with this discomfort and I am a comfort creature, like to be cozy and need all my self-care items. Its like I can't truly rest or feel relaxed until this is done. I am planning on going for acupuncture and oncology massage to help recover.
I have infusion 4 tomorrow, last AC! I would say my first one was ok, 2nd was bad and this 3rd was not as bad as 2nd, so who knows what tomorrow will bring. At least I feel some progress knowing its the last of this kind, so I am trying to focus on that hoping it will make me feel better.
Hoping the best for those of you in the thick of it and just getting started! It's such a mental game to try to just get through it, but you will get thru it no matter what.
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btwnthestars, I had my third on Monday. So far I’d say mine was the same as yours. First wasn’t too bad. 2nd was bad. 3rd was not as bad as 2nd.
I can’t wait to be done too
Sharing some good news here: my sister’s most recent scan shows no evidence of cancer. She was diagnosed stage 3- then progressed to 4. She did a total of 10 rounds of chemo For now no more chemo but she will continue on monthly infusions of avastin. I’ve been crying happy tears for two days now
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I also only have about 10% of my hair left, I buzzed it a couple weeks after my first treatment and some of the hair I think has actually grown since then? I was expecting the rest to have fallen out by now (my third treatment is tomorrow) but what's left shows no signs of falling out. I am considering shaving down the hair I have left so that I feel more confident going bald, but I've heard that shaving it completely off there is a risk of ingrown hairs because it makes it harder for hair to fall out? Did anyone have any issues like this? At this point I'd rather all my head hair be gone then have the little bit I do.
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Monarch, congrats to your sister! That is WONDERFUL news!
Maura, I haven't fully shaved my head, but while I'm down to about 15% hair on my head, my leg hair is going strong! I do shave my legs every now and then and haven't noticed any ingrown hairs.
First of 4 taxol infusions tomorrow, I am desperately hoping that the nurses are right when they say it causes less nausea than AC!
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Monarch - good news!!! What a relief for your sister and family!!
Finally starting to feel better - noticed my brain made the switch yesterday from chemo brain to a multi tasking brain! Got a lot done at work yesterday and hope today it will continue! I also find when the chemo is working itself out of my body I start sleeping better too!
Hope everyone has a wonderful Friday!!
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Hello, I’ve just started chemotherapy 8/6, I have 3 more treatments (every 3 weeks) my last one being October 8th. Im on day 9 today and have actually been doing better the last few days. Day 3 through 5 were the worst for me as I felt like I had a bad flu. Fatigue, bone pain from the neulasta, no appetite, and just general malaise. I did the penguin cap, so not sure yet what will happen with my hair but I cut it this week to prepare. I’ve been saying I don’t want to do this as I’m scared. I almost feel like they want to poison me. I’ve been very healthy me entire life and one month after turning 60, this all happened. At first they said it was just DCIS, lumpectomy and radiation. Then after the lumpectomy they found some invasive cancer cells and didn’t get clear margins on the DCIS, so a second lumpectomy, this time checking lymph nodes. It was found in one lymph node 3.4 millimeters so an oncotype test was done. My number came back as 31, so 4 treatments of cytoxan and taxotere was recommended to reduce recurrence. Some days I wonder is this really the right thing? I’ve never felt like this, but grateful my symptoms have not been unbearable. I only had to take nausea meds once and it was brief.
To top things off, my son who lives with me (he’s an MD/PhD student at UCLA (he’s been home for the past year with the pandemic and I’m so grateful he is) tested positive for Covid on Wednesday. We’ve all been vaccinated, and he has hadjust mild cold symptoms so again, GRATEFUL. I’d love to hear if anyone has felt this way, I’m scared to go on and then I’m scared to not…😭😭
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