Starting Chemo January 2021
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Hey everyone!
How are you doing Jody? Are you done with your second round?
Claire-you sound like a champ with all this. Amazing. Do you use any biotene for your mouth, or is that only for dry mouth?
Had some upsetting news this week that I am still processing. After my second surgery (full mastectomy for the first), I still had positive margins. I will have to do radiation after chemo. I also found out that instead of four rounds of AC, I will also have to do 12 rounds of Taxol following. I am living away from husband and kids since our house is so small I can't isolate from them. I have young kids going to school and bring colds every month it seems. I am broken hearted to be away from them for 3 more months longer than I thought. My OnchoDX score came back at 42, so reoccurrence is very likely. On a brighter note, my brother is flying in from Boston to be with me for a couple months. It will be great to see and spend quality time with him. Still a lot of hurry up and wait. I still can't get a definitive schedule from my oncologist. I am having all my tests done next week and prescriptions ready for pick up, so I think I will be starting soon. ???
What are you guys eating during your treatments? Soup sounds like it would be comforting (if not too hot). Has anybody heard about fasting two days prior to treatment to help alleviate chemo side effects? My oncologist didn't know anything about it, but I might give it a whirl.
You are all an inspiration. It is so nice to have a place to share experiences with and not feel so alone.
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I am so sorry mountain cabin girl! That must be awful! I've already been apart from my kids for 6 weeks so far due to having to travel for medical and then having to isolate for 14 days upon return to the territory. I have one more week of isolation and then I am can see my kids. I'm not going to isolate from them during chemo or I wouldn't see them for well over 6 months. I am hoping the nualsta shot helps to keep me safe. Once I am done chemo, I have to fly to another city for 6 weeks for radiation and isolate another two weeks after. Being away from the kids has been the absolute hardest part. My ex husband isn't being very nice to me either, I am scared he is going to try and use this against me for custody. We were getting along before this but he got a new girlfriend and has turned pretty cruel towards me. I just want to have my kids with me as much as I possibly can. My heart aches for you.
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Starting next week. Stage 4 MBC with bone Mets throughput my spine
No details or specifics of chemo. Believe it will be pill based so guess that’s good. No info yet on radiation
I don’t have much to offer yet other than listening and learning from all of you which I’m incredibly grateful fo
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Mountain Cabin Girl--I'm so sorry--it sucks getting news right now that is anything but positive...ugh. I will tell you I have heard from several people (and now experiencing it myself) that Taxol is not too terrible. I'm sure the worst part will be time away from family. Can you do lots of FaceTime?
I am using the Biotene spray, too. I basically put one is three parts of the house.
and I'm using he toothpaste, too. I accidentally grabbed the Crest to day and promptly spit it out...crazy how sensitive my mouth got practically over night.RedCanoe--Well-that sucks. I can't imagine being away from family that you just want to hug up on. My boys are teenagers and still doing school from home. They are getting Covid tests every week, so I don't feel fearful there. We have basically just all been living together in tight quarters since March. San Francisco is still basically locked down. With my Dec diagnosis...we finally have something more to talk about!
My liver is going haywire, so that is what we are trying to beat right now, too. oddly, this started before chemo. I have an enzyme number that started elevating in September then kind of shot up with the chemo. She did a full liver panel Thursday and my Ferritin test came back 1081 mg per liter. The normal range for a woman is 11 to 200. I will talk to a Hepatologist soon. The simple explanation is that my body is storing too much iron. I'm hoping that's a 'simple' fix....also...yikes....but at least it is not cancer. That is what I was worried about most.
Thanks for listening, everyone.
Claire
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Hi Ladies I have just had one round of chemo 2 weeks ago and due my second this week. Im getting EC for 3 rounds followed by Taxol and herceptin for 3 rounds then herceptin for the year. I was diagnosed at the start of october in left breast then had to wait and do more biopsies(2wks later) on the r breast due to shading (ive yet to have the discussion with ONC re how to keep a tight eye on this hopfully still benign area.) Got my lumpectomy then margins not clear waited another 2 wks then another op. finally margins clear and chemo planned.
Im sorry to hear about the ladies having to isolate from their children as that must be truly awful and my worse fear. The only thing that has come out of this latest lockdown and my shielding is my two boys (10 and 12) are in our own wee bubble and we dont have to isolate from each other. When school returns ill be in the same boat thou as nothing misses these boys illness wise!!!! After my first round I was sick 3 times during the night and didn't realise this maybe wasn't quite normal!!!!! I sat all weekend with my throat and chest burning and finally contacted my Gp 4 days later and got omeprazole and immediately felt so much better. I wore the cold cap although maybe not correctly as I felt my jaw was getting pulled to tight and didn't want to add lockflippingjaw to my ailments.... shouldnt really be a surprise that ive been finding alot more hair on my fleeces/pillows. Im so not looking forward to my second cycle this week and fearful that ill be sick again although i think if this happens they will increase the antisickess premeds they give prechemo. Ive absolutely made myself go on a walk daily with the boys even though that is a very loose fitting description of it and also out several times walking the garden and making the dog run around. That also was the only think kept me sane prediagnosis through the other lockdowns. Apologies for the essay but it does help to know that we could share experiences and as you say help each other through this period of time when we cant have help from others around us.
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Hello newbie here. I start chemo tomorrow. I've been in the shadows reading post for the past month. I am starting with TCH for 6 cycles, then just H for the year. I have a question about the 5grastofil/filgrastim injections which I was told to start on the 3rd day. I never got an education for it. I'll ask the nurses at my treatment Center tomorrow but how do you take it? Also the Claritin, do you take it the day before or the same day as the injection and for how many days? Does your MO need to approve it first?
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I just did that ista! I took Claritin when I got home from chemo and then the injection 24 hour hours later. It is regular Claritin NOT Claritin D. I took it three days in a row. I had no side effects from the pegfilgrastim. Maybe it is luck, maybe it was Claritin.
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Mountain Cabin Girl, So sorry to hear that you need to be away from your children for even longer. That is so sad. I know it may not seem like it now, but being able to spend so much time with your sibling will be something you will always treasure when your life is back to the normal chaos. Actually, some days I think I would have better support form a friend than I do here with my family (husband & 21 year old daughter).
Thanks for asking about my 2nd chemo. I had it last Wednesday. This weekend I was totally exhausted. I have slept most of the weekend. Eating light foods. I feel better when I have food in my stomach, even if it is just crackers.
Here is my input on some of your questions and other things that be helpful-
1. For your mouth - My mouth started getting chemo mouth on day 4. The end of my tongue is a cross between feeling burnt and being numb. I found last treatment that Peroxyl Mouth Sore Rinse really helped my mouth. Right now I still have saliva in my mouth. Last treatment, I went through several days were my tongue got worse and my mouth completely dried up. I used the Peroxyl Mouth Sore Rinse because I was worried about mouth sores, but did not get any. I do think it helped the overall condition of my mouth.
2. Foods - The several days that my stomach isn't normal, I eat toast, eggs, cheese, soups (chicken rice, chicken noodle) with crackers. I drank 96 oz. of fluids the first few days to flush the chemo.
3. Wet wipes - I didn't use wet wipes my first treatment and ended up with red irritated skin from front to back. I picked up some unscented wet wipes and have used them this time, especially the first few days flushing out the chemo. I am showing no signs of irritation.
4. Queasy Drops - Available on Amazon, but I found these around $8 at a local pharmacy. I have found these to both settle my stomach and keep my mouth lubricated.
My onco score was 39, very close to your score.
I have 4 TC chemo treatments and 15 radiation treatments over 3 weeks. I found out last week that I need to wait 4 weeks between chemo and radiation. So guessing radiation will be done in April.
I scheduled my first COVID vaccine for Feb 2nd. I am looking forward to being able to having treatments behind me and able to go out with friends...do activities.
Ista - Good luck with your first treatment. I found mine was not as scary in reality as it was in my head. My prayers are that it is the same for you!
Carlo - Good Luck with your second chemo! You have this.
Claire1973 - I hope they are able to determine the liver number issue...and it turns out to be only an iron issues.
I am thinking of you all. Take care of yourself Jody
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JMS17202 - hey there- SO. HELPFUL.
The wet wipes part is eye opening. Going to start that tomorrow...obviously they glove up with double gloves because they risk exposure all day...then it is flushing out of our systems while running against our skin.
SO. HELPFUL.
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Hey JMS17202 yes thanks for the info and didnt even think about wet wipes, so will get onto that asap before it becomes as issue Take care
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Hello, well I got to my treatment Center and they rescheduled me for tomorrow. They were short staffed because the other floors need them. I wished they would of called me.
JMS17292-thanks for the info. I got some unscented wipes on my way home today. So I guess my trip to city wasn’t a total waste.
I wondering about how you ice your hands& feet.My Center said they do that but I didn’t ask how. I ordered the gloves & socks from Amazon but it won’t be here until Wednesday.
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Hello all!
I had my first infusion on Thursday the 28th. Got the Red Devil. Didn't sleep well the night before. Very anxious. The nurse was wonderful and so caring. Made me feel comfortable and explained everything. It all went well. The moment I got in the car, I crashed. Felt nauseous the rest of the day. Took steroids and anti-nausea medication until late in the night (doctor orders). Friday much better. I feel like I have brain fog all the time now. So interesting how everyone experiences the effects a little differently and on different days. Next one is February 11th if white blood cell counts all look good.
Thanks for the wonderful tips from everyone. So helpful. I have a box of gloves to save my hands for the next several months and wipes. I have gone walking everyday even though it leaves me tired.
For those of you that have had 2 or more infusions, do you find you have the same symptoms at the same times afterwards, just more severe? I am mentally trying to prepare for this. The next time I see my kids will be after I finish my final AC infusion in mid March. I think it will be my lowest point as far as fatigue and overall appearance. I miss my kids terribly, but not sure if they should see me in such a state. It could be quite night and day to how I was before I started. I don't want to shock them. Will have to tread gently and see what the kids are comfortable with.
RedCanoe-I hope you don't worry about your ex. You are doing everything to get yourself healthy for your kids. Keep your focus and energy on that. You are doing an amazing job! You are so strong.
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omg my ALT went up to 136 after just one round of chemo. Freaking out!
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Hi Red Canoe, My ALT went way up, too...even resulted in a CT Scan, but my doctor is not worried. sending prayers that it is okay. my doctor suggested NO Tylenol and NO supplements (except fish oil and calcium with D3). Supplements can be hard on the liver. Hang in there.
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I just had a clear ct less than 2 weeks ago thankfully. How high did yours go? I'm so scared of a delay.
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mine went to 97 and has been hanging out there for 3 weeks, but the scarier part (to me) is my Ferritin is at 1080....normal range is 11-200 in women. Again--MO not worried. She actually thinks it started before the chemo. I see an Hepatologist this week. There has been no talk of delaying treatment so i'm thankful for that. My WBC count is at the lowest end of normal. I'm more concerned about that delaying, but i'm eating a lot and resting a lot this week so we will see. fingers crossed. a delay would really break my spririts.
xoxo
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Hi all - this is my first post. First chemo was 1/21/21. 3 more to go. They said the first 3 days after the chemo would be the worse. For me, I had no problems...they seemed to be my best days. Day 5 & 6 brought me a very sore lower back and a headache I never had before. Day 7 was doctor's appt and back was fine...still a little headache, but blood work was excellent. Apparently, I get to go through menopause with my chemo. Day 9 brought me sediments in my urine and Day 10, I am lucky to now have a sore right side of my throat, though it's not a sore throat...very strange. I feel like every day there is something new and I'm starting to feel like I'm a baby!! All the items that they say are side effects, I don't get...but I get these strange things...at least I think they are strange. I'm very frustrated with it. Thanks everyone for sharing their experiences, it definitely helps me.
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Hi Lsparty--definitely get the Biotene spray. It is great for all mouth woes. and Do you have Biofreeze? it's a roll on. You can roll it on your sore spots and I find it helps. Hang in there!
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Redcanoe, I started chemo in December and my ALT jumped to 105 after the first infusion, then to 158 after the second infusion. I was sent for a scan of my liver, kidneys, etc and all looks good. I was told to refrain from alcohol, tylenol and all supplements. It continues to rise each week (but in smaller increments) and is in the 180s after 8 infusions. My last dosage of chemo was just reduced, so we'll see if that helps. Hopefully yours slows down too.
Update: One week after reducing Taxol, my ALT dropped for the first time in weeks to the 150s. Yay! Only three more weeks of Taxol left for me, then I might be starting AC for 8 bi-weekly treatments. Any experience or tips for AC?
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My dose of docetaxel was reduced by 20% for tomorrow. I really hope my numbers drop soon.
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hi everyone. I will starting chemo in a few weeks. Go fro surgery next week. The idea of chemo really scares me. My oncologist says I have 50% of living 5 years, so the chemo seems necessary. My tumor is on my chest wall behind my DIEP flap boobs on the right side. Reading about your experiences is helpful. you are all so brave and strong.
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hi mememee- welcome and sorry you have to join us. I just had my second round of chemo yesterday and so far it hasn't been as bad as I have feared. I see chemo as a very positive thing that will help me - the cancer is way scarier. I'm doing whatever I can to minimize side effects, drinking lots of water, taking my meds as prescribed and walking as much as I can.
I am disappointed though. I thought my docetaxel was being reduced 20% but it was actually 33.3%. I really hope my liver enzymes recover by next round. I can't stand the idea of not throwing everything at it. Still I'm remaining positive. There are alternatives and I still have radiation and hormonal therapy ahead of me. This is an assault on the cancer on many fronts.
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hi Redcanoe
I have finally come to the conclusion that I will do chemo. My doctor left me with the impression that the chemo would only slow progression and was not “curative”. After my surgery pathology she said it could be cured. That changes my perspective on at least trying it. Next week I go for a second opinion about my treatment plan at the recommendation of my oncologist.
Thanks for sharing that it isn’t as bad as it seems. Hope your enzymes level out so you can keep on your planned schedule.best of luck.0 -
I am so happy you are feeling better about your treatment plan. It sounds absolutely worthwhile to do chemo.
My kids have been sick and I caught a cold from them. I had a fever so I had to go to the ER. My white blood cell count was great so I got to go home and recovered quickly. I'm back to feeling good. My liver enzymes were exactly the same, not better, not worse. I have a few days for them to come down more and im not sure what that will mean for my next round of chemo.
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round three TCH underway. Had to have another reduced dose of docetaxel which sucks but at least my liver enzymes are trending down.
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that’s great your enzymes are headed in the right direction. Hope the rest of your treatments stay on track. I am getting my port put in mid March. Have to get my second covid vaccine shot a few days before. I am getting comfortable with my fear of the unknown when it comes to my treatment. One step at a time, on day at a time.
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Hello, I’m bald now & happy to report I don’t have any weird birth marks or a strange shape head. LOL. My leg hairs are holding out, they are the longest right now. I had my second treatment yesterday of TCH and I had a small allergic reaction to Herceptin. I got dizzy then anxiety then small cough because of itchy throat & face flushing. The nurses gave me some Benadryl & something in my IV. Symptoms went away 30 minutes later. They called my MO and he wasn’t worried. I’ll probably get more premeds next time. Also no inflared veins to the carboplatin this time. They gave me 50% saline at the same time. It only burned after when they flushed it again. My vein from last time is still ugly. My constipation came back too. Sickening! My new unfavourite drink is prune juice. My mouth is doing better this time. Cross my fingers I stay on top of it with the biotene & baking soda rinses. I had to stop using the unscented flushable wipes, I was sensitive to them. I wonder if I should try a different brand. Maybe unscented baby wipes?
I can’t imagine having to stay away from my children during all this. My kids are what keep me sane & cheer me up. My heart really hurts for you ladies and I hope you can FaceTime at least. Maybe writing them some post cards too, my kids love getting things in the mail0 -
Hello , newbie here😢 have to do 4 TC treatments and trying to decide whether to use cold caps , has anyone done so and what results did you have? Starting this scares the you know what out of me right now.
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Ista,
I get Benadryl every week in the pre-meds. I am usually asleep from it before they even get to the chemo! I also had a reaction the first time (even with the chemo), so they slowed it down. My reaction sounds exactly like the one you had. On the second infusion, they slowed it down in the beginning but I was fine and has been fine. I've had 8 of 12 weekly doses of Taxol with Kanjinti (which is like Herceptin).
So sorry about the wipe! DEfinitely try something for a baby. That should be the more gentle.
xoxoxo
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thanks Claire1973, no worries about the wipes.
So I started with a scalp rash this week too. I was using Benadryl cream & pills at night as recommended by oncologist but It isn’t getting better. So now they want me to try steroids. I just finished my thrush medicine and I’ll probably get it again. Grr. It’s just so itchy. Any suggestions for scalp relief?
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