Starting chemo February 2020
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thanks nimmy! There's a Trader Joe's by me, I'll stop by tomorrow or Thursday and see if they have it.
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My 2nd round of AC was not that bad at all. I managed to avoid nausea, constipation, diarrhea, mouth issues, and dehydration. Primarily I just struggled with fatigue and losing my hair. It has finally 99% gone and my head doesn't feel as tender any more. I can only hope the last 2 rounds of AC are this uneventful! I go for round 3 on Thursday. Good luck everyone.
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Nimmy- Thanks for the oatmeal tip. I’ll have to make a Trader Joe’s stop.
Dysonsphere- happy to hear your second round went so well! That’s so great. You’re halfway done! Only 2 more to go...you got this!
I buzzed my hair tonight. It was super shedding and felt like I wore a tight ponytail for too long. I go in for round 2 of TCHP tomorrow. Hoping for minimal/similar side effects. Minus the neutropenia, which should be negated with the Neulasta injection (which could cause some new side effects but I’m ready)
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morrigan- I'm sorry you are suffering with thrush.
MNSusan- Keep us posted on what the cardiologist says. My heart rate has been high but not as high as yours. I hope all is well with you.
Dysonsphere- I'm so glad to hear that your second round went well.
Ajminn3- Hugs for you.I hope you feel okay about buzzing your hair.
My hair started falling out on Saturday (day 13). On Monday morning it was such a mess in the shower that I had my husband buzz my head. It's still falling out quite a bit. My scalp was tender so this evening I rubbed some mineral oil on it. It was very soothing!
I've been feeling great and enjoying having energy. On Monday I'll start round two.
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Not sure if the lozenges are working or I've just gotten over the hump and I am now on the up swing but, the Thrush seemed to clear up last night.
Also, I just started using these organic lollipops and hard candies called Soothease, you can buy them on Amazon i have the Orange Flavored Barley and the Peppermint Flavored Barley. The Peppermint Candy reminds me of root beer, the Orange tastes pretty good too and, reminds me of something I can't put a name to.
https://www.amazon.com/stores/node/16055720011?_en...
They're supposed to help with the weird/metallic tastes. I don't know if they actually do that but, they taste good when I want something after blah/bitter food.
They are expensive $12 (each) + $6 (for shipping) but, for me they provide a nice treat.
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hray1993, you look great. I still have a few hairs sticking around lol. I'm waiting for my leg hairs to go. I feel like they stopped growing but they have not fallen off.
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For those of you with mouth sores, a coworker, who was stage IV and did immunotherapy suggested a mouth rinse of children's liquid Benadryl and Maalox. Take the recommended dosages and swirl them around in your mouth. He said you can swallow it for throat soothing or just spit it out. He said the prescription stuff is the same but that the prescription also contains painkillers that you won't get with the homemade version.
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scatteredenergy - I have the same thing with the leg hair. I stopped shaving awhile ago, and the leg hairs aren't growing, but they aren't falling out yet either, even though my head is almost bald. I've still got my eyebrows, so I'm not complaining yet, I am dreading when those go.
ajminn3 - I hope the hair shaving wasn't too traumatic. It wasn't bad for me, the kids were there and I just went for it. I lost so much more hair afterwards, I'm glad it was buzzed short or it would have been a hot mess. My bald head looks really weird, I still have a fuzzy layer of hair hanging on, so I think I look like an old lady or something. I'm looking forward to when it's all officially gone, because it's so thin and weird now.
mmorigan - I'm going to check out those lozenges. The change in my taste buds was one of the worst parts of my side effects.
TexasMama - good idea on the mineral oil. I'm wondering about scalp care. So far I still have a fuzzy layer thats hanging on, but i know i'll have to care for it somehow. Glad you are feeling great!
Went for my 2nd treatment today. So far so good, I'm more prepared and hoping my side effects are a little easier to manage now that I know what was hard for me last time. My husband was able to be with me this time, and I just worked on thank you notes to friends while he worked and then we watched a dumb rom com with Rebel Wilson. The hospital has tvs with on demand movies, and I had a private room, so it was pretty nice day. Oh, and my doctor did a breast exam and she was very pleased with how much the tumor shrunk after just one treatment. She was also very happy with how I bounced back from my side effects. They scheduled me for hydration in one week, because it really helped me last time.
The weather is turning more towards spring here in IL, and I'm feeling positive right now. Two treatments down, four to go, I can do this!
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Fab4mom- I’m glad to hear your infusion went well and so glad to hear that your tumor shrunk
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Fab4Mom - I just read the package, the Orange is for taste, the Peppermint is for mouth sores. She also makes a chocolate for mouth sores. Not sure if the Orange will work but, I hope it does as I hate that bitter taste in everything that's not sweet
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My nail beds have started to turn grayish color. Is there something we are supposed to do for this new side effect? ;(
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Dysonsphere - I just had my 4th DD A/C and have not experienced any changes to my nail beds. I would definitely reach out to your medical team to see if there is anything you can do. When I met with my MO before this last treatment, I mentioned the blisters I have been getting on my feet - doctor took a look and said that I had Hand/Foot syndrome - luckily just on a couple of toes. He had me ice my feet during the "Red Devil" portion of the chemo - starting 15 minutes before the meds were given and continuing for 15 minutes after. I have a whole new appreciation for everyone who has been "icing"! I barely made it thru my feet were hurting so badly from the cold! Good news - went for long walk today and no blisters!
I start DD Taxol in 2 weeks - so a whole new set of SE. My MO suggest Glutamine powder to prevent neuropathy - specifically the powder mixed in a room temp or cold liquid. Am going to try some over the next couple of weeks to see how it tastes/how it affects me.
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icing my hands hurts the most, socks aren't too bad.
Thanks for the glutamine powder tip, I will add it to my list of questions
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I made it through round 2 of TCHP yesterday. 4 more to go! No immediate side effects so far but I know it’s just a matter of a few days when they kick in. I got the Neulasta Onpro so we will see how that changes things this round. I handled the shaving of my head better than I thought I would, which is good! My 3 and 5 year old are actually having a harder time with it, but we keep reminding them that I am still me and can still do all the fun things even without hair. It’s just all so hard for them to understand being so young. I hope everyone here is doing well!
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I can relate to the kids and hair. My kindergartner has taken it fairly well. Right now I have a sparse covering of hair that I would like to just buzz off but my son asked me not to cut it off. He likes seeing some hair there rather than nothing so I keep the "fuzz" for him. I had to apologize to him this morning for being grumpy. I have my 3rd round of AC chemo today and I've been a bit a bitc* the last couple of days. I just hate having to start the cycle all over again. Even though it was way better this time. You just never know what is going to happen after that 3rd day following infusion....
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My nails are still the same. No changes. I might see changes after I start Taxol. My MO says Taxol will be much easier and I hope so because if not it will be a long 12 weeks lol
I did side by side pics yesterday and shit. I notice a difference. I look older, fatter.
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I found these lists really helpful and thought I would add some things I've gotten and some tips I've heard:
- Try to swap beauty products for cleaner versions. Sephora has a clean label now and lists ingredients really clearly. The FDA doesn't regulate this stuff. Isn't that nuts? So many products have ingredients like formaldehyde. My chemo nurse says she thinks more doctors are going to start recommend people take a closer look at this stuff.
- Get non-toxic nail polish (Ella + Mila is great and at Target), dump half out and put in tea tree oil and and just keep putting it on your fingers and toes. Keep nails short. I have a friend who had her nails turn black and it scared me so I will definitely be doing this!
- I bought these 2natra cure ice sock gloves on amazon for my feet and hands to help protect my nails.
- Got a nice Braun Thermometer at Target.
- If you travel wipe down the whole seat and try table with lysol wipes.
- My oncologist said that working out is one of the best things you can do to get your chemo running through your system (and working) so I got the Tough Headwear beanie cap on amazon for workouts. Super light and moisture wicking.
- Get non-toxic face spf. I love Super Goop's Unseen. It feels like a light primer not sunscreen. Coola's moisturizer/sunscreen combo is great but only works with super natural makeup.
- Thank God for GT Kambucha and Hu chocolate. I put a few drops in GT kambucha with my water at meals to keep my gut health up. It's so good and they don't add sugar to most flavors. Hu Chocolate is SOOO GOOD and they use great ingredients as well as coconut sugar which is fairly nutrient dense.
- Whole foods has an awesome beauty section - make up and everything.
Hope that's all helpful!
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Dysonsphere- My kindergartener is having the hardest time, but that could be because he’s the oldest? My 3 year old just keeps exclaiming, “you’re going to be a grandma now!” and def feeds of the 5 year olds emotions on things. It’s a tough situation to understand at such young ages. Thankfully my 1 year old doesn’t notice a thing and won’t remember this (hopefully) short window of tough times. I’m bringing the 5 and 3 year old with to my therapist session (at the hospital I go to) and she does a kid friendly overview with a fun (also kid friendly) tour and answers questions. I’m hoping it’ll help them a little.
ScatteredEnergy- I think you look so beautiful! You have beautiful skin and a nice head shape (I know that sounds kind weird, but I don’t have a great head shape haha). I hope those of you starting your Taxol treatment soon have some easier SEs!CtinaMarie4- thanks for the tips. I’ll have to look into them!
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Thanks lol. And not weird at all.
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I really feel for those of you who have young children. I’m sure it’s so hard for them to understand what’s going on. My girls are 13 and 15. I’ve been able to be very open with them throughout this whole process. They were so helpful after my surgery and now during chemo.
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My hair journey so far. I've always had long hair that strangers compliment. I never really appreciated it. I always said in response that it was hot and took a lot of taming. But that same bothersome hair looked great when I cut it into a bob in expectation of losing it. I included pics of me and my gf who is supporting me thorugh this journey. She has liver cancer. So grateful she does not have to go through this type of chemo. She will have a resection and should be cured.
Scattered, its crazy how different we can look without hair. I think that once we are off steroids and our hair grows back we will look fine. I find that my skin is looking better. My dermatologist had mentioned that since I had oily skin that my blocked pores would clear up and she's right! One small perk in a long list of side effects that nobody wants!
ajminn3, that's so true. My son says I look like a "grandma". I told him its temporary. Although, I guess I could be a grandma lol
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I've always had long hair and cut it short for the chemo too. I find that I actually like the shorter cut and may keep this length after.
I really love the second picture, that Bob looks awesome on you.
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Dysonsphere and AjMinn, big hugs. My 11 year old is having issues too. Can't imagine how difficult it is for the younger ones who don't fully comprehend everything. I'm cold capping and finished treatment at 5:17 pm yesterday. My daughter's school play was also yesterday and she had to be there at 5:15. So, I drove her over there with the last cold cap on and told her I was wearing it inside and that I would floss dance my way down the aisle while looking for a seat. She was mortified!! She begged me not to do it. She's at the “parents are super embarrassing" stage. Lol. I sat in the car to finish and she jumped out and ran to the auditorium as fast as she could once we got there. 😊 My hair was a mess so I wore a head covering in. I don't care for the staring and looks of pity.
Scattered Energy and Dysonphere - you both look beautiful and have such radiant skin!!
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So 3rd chemo was today. I'm a bit off emotionally and cried the whole way through. I hope my spirits pick up.
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Day 4 of round 2, definitely getting sinus pressure after Zarxio shots - I had some sinusitis last time so wasn't sure if the weird face/tooth pain was directly related to the shots but now I'm convinced. Overall am doing better this time around because I prophylactically took Flexeril last night, so no back spasms this time around. Still have some headache which I think is dehydration even though I feel like I'm drinking so much water. A liter of coconut water helped a lot yesterday so I just went and bought a few more.
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scattered energy - I'm sorry you had such a rough time. I've heard from others that take anxiety pills to help them through. Might be a good idea to get a prescription from your MO before round 4.
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I had my 4th taxol yesterday and thank goodness no reaction this time! I'm no longer getting steroids though and I'm feeling terrible. What does everyone do for the fatigue and the achiness and flu like symptoms. I feel like I have the flu constantly trying. If I'm feeling this bad on taxol I have no clue how's I'm gonna make it through The AC
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hray, have you asked your care team if you can continue steroids? My care team is real good at giving me as much support as I need to try and keep me feeling good. With the AC, even so, I don't fee great but I feel so much better than the first round. I get initial steroids with chemo and then 3 following days of steroids. Once the the AC gets really bad, which around day 7 thru 11, I get 2 more IVS with steroids.
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we talked about it Thursday when I went for chemo. Because of the immunotherapy I’m on theu don’t want to continue steroids because it would counteract it. Or that’s the way I understood it. They gave me more medicines for nausea but they said they want to tru to stay off the steroids if we can. I just feel like I have the flu. I’m so achey right now and have no energy. Idk anything that can help and I feel like I’m just being a big baby especially since everyone says taxol is so easy but it’s not easy for me
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hray - unfortunately I don't have any suggestion on combating the flu-like symptoms, but I am feeling them, too. I just keep reminding myself that this means the medicine is working!
I have been having insomnia from the steriods, so maybe you are dodging a bullet there...Losing my eyelashes is the next phase I'm going through. Still have some eyebrows. And body hair. Very little up top. I do find myself in tears alot and I feel like a big baby. I haven't cried in the chemo infusion room yet, but it could happen. I give myself permission to cry like a baby at the age of almost 68 any time and anywhere. As Marlo Thomas used to say, crying gets the sad out.
Everyone with young kids or young grandchildren, I need help.
Just learned that my daughter is flying in from Denver in a few weeks with her daughter, who just turned 7. I could really use some suggestions on how to introduce my granddaughter to my situation, as well as the physical changes that she will notice. Does anyone have any books or videos they could point me to, or things that worked for them? Thank you!0
