Starting Chemo April 2020
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Hi all!
Phew! What an awful week. I’m finally on the other side of the chemo SEs and back to feeling human again. Still - it makes me a bit terrified about the next round. I’m so glad to finally get a chance to catch up and say hi. And read all the posts about reconstruction. Lots of good information all around. Thank you! Although I am flat now, I’m still going to get some sort of prosthesis or something to fluff up my chest if I have to go somewhere in something other than yoga pants and a huge baggy shirt. Maybe by next year? One thing you have to say about Covid, it sure gives you time to think over your decisions 😂
Thinking of you all, hoping your weekend goes well and you’re all feeling okay. I’m now half way through. I’m going to do this even if I have to crawl over the finish line on my hands and knees - d%^^&&*m it!
Nan
PS - I think I might need another buzz cut. Some of my hair is still there and it’s GROWING? Has anyone else had that? The other day I took my cap off and looked in the mirror. I looked like I’d had a horrific fright. My hair was sticking up all over my head, sort of like a mad scientist. Not a good look.
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Nan
I had a similar week in that i didnt feel as well as i have past times...
My hair is the same as yours.
I am done with AC and will move to Taxol next week.
Fondly,
Allie
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Nan - I just said the SAME thing to my husband. The hair I still have left is growing and he needs to buzz me again. Otherwise it starts to look too wispy.
Erin - great thoughts, and great resources. I'm also with you and your husband - I don't want multiple surgeries.
Sherri - CONGRATS!! I can't wait to ring that bell at the end of July!
Kris
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Nan, I’m so glad that you’re getting over the side effects! I always breathe a sigh of relief when I feel I’ve crossed that mini-finish line and begin feeling human again.
Sherri, I’m so very happy for you!!! Lord willing, I will be ringing that bell in July! Congrats, friend!!!
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Wow, Sherri, what a great story! I love hearing how we're all connected and stories of when love is shared freely from person to person in such surprising and meaningful ways. Big congrats to you on finishing! I love the pic! Wishing you as easy a time as possible with side effects and good news from your scans! Hugs
Nan, Allie and Kris- Ugh, I’m sorry to hear you haven’t had good weeks. But I know you’re strong and can do it! Nan, even if you had to crawl on your hands and knees to the finish line, we would be there, also on our hands and knees so you can see us (hahah, cheering on your baby shuffles until you make it!
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Jess,
In the main, AC has not been the horror show one might think it could be. I thank good side effect control measures, a good onco management team, my chemo nurse who has a halo and wings as far as I a concerned and this group. Thoughout the entire eight weeks what I have appreciated most is that I have had an excellent appetite without any sort of even concerning nausea etc. I have had queasiness at times but no vomiting.
I am feeling better and I really do think my down days were from the culmulative effect of chemo I was warned about. My medical oncologist said this would happen and that with each session, I would start to feel perhaps a bit worse for wear.
I want to remind all, especially those who have not done chemo or have not done AC, that EACH PERSON IS SO DIFFERENT!
Listen to the expert team around you. Be as prepared as you can be.
I am going to be writing up what I am going to call "cheatsheets" on my recommendations.
My cancer center provided what I would call a cheatsheet too that gets me through the day of chemo and the four days after. It has been a life saver because it tells me exactly when to take my SE meds and what to do about the common problems, in my case CONSTIPATION is a big one I guess for my therapy.
I am thinking also of how to organize other aspects of my experience (side effects and management of the same for example) in a helpful "cheatsheet" format as well.
Today - I am feeling more like "Allie" again. More energy. Clearer thoughts. Happier attitude. Etc.
I have developed a BIT of what is called "hand and foot Syndrome" apparently (will be examined further next week) and the management of this has not been bad. Just lots of moisturizer and common sense (avoid temp extremes, don't torture your hands and feet with excessive use, etc.)
Love to all,
Allie
PS. I feel like fighting too and will scratch my way to the finish line if I have to.
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my swimming here would of been in a spring fed lake but the pool opened 3 days ago!! The good thing is out MH is not parked near lake or pool so it’s easy not to use, although I’d love to inflate my paddleboard and just go, maybe, not sure
Gainesville is close, stay safe
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Sherri — congrats!
All — it’s been just a yuck week. Individually, embarrassed to mention the insignificant SEs. Cranky is better now I’ve slept. hair coming off but haven’t had the energy to cut it yet. Do have most of it in tiny pigtails ready for me to cut.
Just feel off kilter. Tiny sand particles sensation on my tongue. This is second week of downturn of overall well-being. Am hoping it’s all attributable to lack of sleep.
Love to all.
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j
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J - I have that "tiny sand" sensation in my mouth too - especially after I eat. Mostly the first week, and then it's gone. I think it's related to the dry mouth. It was better the last round, since I did the ice in my mouth during the taxotere. So I'm going to do the same again this week when I have Round 4 on Friday.
Kris
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Dry mouth. Ya. Same here. Feels tacky. Inner gums and front of mouth roof feel like sand paper. It reminds me i need to be vigilant about mouth care and using the soothing rinses, lozenges, the biotene moisterizer at times. And drink tons of water.
"Off kilter," "tiny sand," both excellent descriptions and yes lack of sleep doesnt help anything as we struggle through this.
I feel i have learned so much. Just knowing the is a reason for the side effect helps me deal...recognizing my usual response to a chemo session and when a SE may happen has helped.
There is a lot i wish i had known earlier...but how could i? The entire onco team - everyone- does the best to prepare you and help you - but you really dont know until you go through it!
I include my chemo nurse as being on the very front of the frontline of this. She's been the 'quarterback" in this game to me.
Blessings to all for the coming week, and always. This week will be pre-chemo and the first chemo with Taxol for me!
Allie
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Wohoomama, byhisgrace, and everyone else
I’ve been using the mouth moisturizer tabs religiously at night and ice during TC chemo. Please read/search Tiffany’s 20 tips for chemo, I bought almost everything on list except I bought cryo max gel freezer thingys. It’s a great list snd has. Even combined with BC.orgs chemo tip list.
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I’ll look for a Tiffany’s list. Thank you for all the other suggestions also. Think the Taxol for me has held up its nickname “chemo lite” nickname. I’m oh so grateful. If it stays that way, I have eight more to go. 🙏
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j
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Popping over from the May chemo group to see how our big sisters here are faring.
hnsquared: Your acne query caught my eye. I had a bad outbreak after my 2nd Taxol. (Pharmacist said it could be the Taxol; MO said likely the steroids. Either way, no fun.) My Ayurvedic practitioner recommended some tea tree oil + lavender oil. Mix a couple of drops of each in a carrier oil. I use some fractionated coconut oil. Then just dab on the zits, but don't wipe all over, esp. as tee tree oil is very drying. And def. do NOT apply the tea tree oil without mixing it into something neutral first. In any case, it cleared me right up. Maybe it would work for you? This really is like adding insult to injury.
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unreal tarheel....thank you! I have both oils so I will try that. It’s just a blemish or two but as you said it adds insult to injury when I’m bald and not feeling my prettiest self 😃. My MO thought it was probably the steroid. I appreciate you posting here. I hope you are doing well with treatment
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Sherri - Your picture is beautiful! So inspiring. Thank you thank you thank you for posting it. I teared up when I read the story about the shirt. It’s amazing how much love is out there, just waiting for us. Congratulations on finishing chemo. We are all watching with starry eyes, seeing ourselves there, too. ❤️
Jess, thank you for your encouragement. This Is a weird snail race, and thank goodness for this group. I feel like there are days when I just can’t anymore - and then I read what you all write, and I pick myself up and keep going again. Tuesday is #3 of 4. Right now I’m half way there plus a bit. I’m a lot more tired than I was last time. Being the energizer bunny normally, it’s discouraging and a bit depressing. But it’s also a good excuse to slack off and read books, knit, talk to my daughter on FaceTime, and take a nap whenever I want. So, looking at it all around, not so bad. In time the energy will return and I will have a chance to go back to myself again. I feel pretty lucky.
Hope everyone is feeling okay and ready for their next round, (the dry mouth is so annoying - I feel like I’m hungover and still laying on the dunes under the hot sun! Sherri, I am so happy for you and hope the SEs go away quickly and you get a break before whatever is coming next. You deserve it!
Nan
PS - I’ve been using tea tree oil, too. It’s really helped my skin. It totally backtracked an emerging cold sore last month, and I’m now using it on my sunburned face, very diluted, to stop it from itching and flaking. (Who knew that 45 minutes in the sun at 3PM during a walk under the trees would do that !?)
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ccgirl
For mouth dryness use xylimelts or ACT dry mouth lozenges. I use the first one every night 2 tabs and I recommended them to someone for a sandy feeling tongue snd she said the sandy feeling went away. Hope it helps
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I have my very first mouth sore. Ugh! Just finished my final round and also never had any sores when I did it 10 years ago either. Luckily I have a bottle of magic mouthwash, which I’ll try today. It’s been sitting in my cupboard since April and expires in two days. LOL.
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Hi all,
MOUTH SYMPTOMS
I've not had actual sores that I have seen but I have had "sandpaper mouth," sore areas in my mouth (base of tongue for some reason and around one crown), and "tacky mouth."
I had been using before chemo: The Healthy Dentist Peppermint Twist mouth rinse (20% aloe vera) for my extensive dental restoration. For the chemo I added: Biotene Mouth Rinse, Biotene lozenges, Biotene Moisterizier.
When I had the actual soreness, I found the salt rinses were very soothing.
I'd recommend ice water too. OH, and my onco team recommended something like Ambesol if I got an actual sore.
Oh, I used before the chemo: Paradontax toothpaste for bleeding gums to take care of the gums because of my restorations and I ***believe*** that sort of toothpaste could be helpful for chemo mouth.
CUMULATIVE EFFECTS OF CHEMO
Noting the yucky feelings latter in chemo: since chemo is cumulative, the more we get it, the worse we will feel. That's what I was told and in fact on my last session of AC, I found that was true. Nothing horrible, but I could tell it was starting to catch up with me and felt more tired, experienced a definite decrease in appetite (which had not happened previously) and a touch of queasies and heartburn that had not happened since the first round of chemo.
Another thing that happened to me: some mild to moderate hand and foot syndrome which I seem to be controlling well with conservative at home measures of protecting the hands/feet, moisturizing, avoiding hot temps, etc. I believe sun exposure can set this off.
Nasal Symptoms (not mentioned in recent posts but certain related to chemo): continues and the darn shipper did not get my nose moisturizer to me for OVER ONE WEEK (!) and I had a flare darn it. One chemo NP told me again today she thinks this is Cytoxan...grr. I find it ironic that everyone worries about Adriamycin and yet Cytoxan is the one that can irritate the bladder and apparently the nose (Please do not take what I am saying as medical fact nor advice nor even as correct (I could be horribly wrong) - listen to your medical team.), I'm going to be talking to the oncologist tomorrow about this and other matters in my check up with her!
Allie
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BG - mild mouth issues is what’s been one of my my biggest issues in the last couple weeks. I historically have dry mouth, long before chemo. Biotene toothpaste or rinse never seemed to help much. So I just routinely used a mild salt rinse and drink lots of fluid regularly every day.just tried to keep it wet. Pain vm meds make it more dry.
Since chemo i’ve been using the baking soda, salt, water rinse frequently. And that has helped with the dry mouth. Then the other night I had these little sand particles sensation, which I think were tiny taste buds..They were barely visible as being swollen, but they felt like mushrooms covering the sand. Sueshee55 recommended xylimelts and ACT lozenges — went straight out and bought them. they were a God send. By the next morning, the sand particles were gone. Still have dry mouth, but that’s normal for me
also, I was worried because I had bitten slightly the inside of my cheek, and was worried it was going to turn into a major problem. And had a little dry mouth crack in the corner of my lips. I kept up my normal routine of the baking soda, salt in water rinsing and used the lozenges— the in the inside cheek healed within a couple days.
On the lip corner crack I alternated Carmex, regular Chapstick,and rose infused vaseline. Took about a week for it in my dry lips to heal, but heal they did and I was ever so grateful.
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Yes to Carmex! I forgot to mention that!
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I will also add to the dry mouth - I've been using a toothpaste called Oxyfresh that my sister got for me and it's helped. She also sent me a mouth gel that I use on sore spots - also awesome.
I'm going to try the xylimelts - had not heard of that. I sucked on ice the last time I had chemo during the Taxotere (the culprit for me) and it really helped - my SE in the mouth were WAY less.
Dry nose - I take a cotton swab and smear coconut oil up in there. That also has REALLY helped. I had the dryness - but no bleeding this time.
Agree about the cumulative effects - the fatigue has definitely lingered in a small way.
Reminder again - especially for new folks - we have a VERY active FB group going now with the April 2020 ladies. So much easier to follow a conversation. Please PM me if you want to join!
Kris
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Ya. I really need to get some coconut oil.
Oh FB pretty frequently now.
Allie
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Kris — warning, the xylimelts taste nasty— but I use them alternately withe the ACT lozenges. Since the blue ACT look like the yellow Cepachol (sp) lozenges I was prepared not to like them as I don’t care for the Cepachol taste. but much to my delight, the ACT taste pretty good.
one other mouth thing I’m having is sensitive. I’m a Diet Cokeahocic and cannot drink them because of the burn. Ketchup, pizza spaghetti sauce. I’m guessing it’s the acidic element of these foods, but when I stop drinking Diet Coke — it’s real.issue. Tea doesn’t bother me, so tea and water it is.
pulled our my buffs from my winter gloves and toboggans container today.—needed to keep some body heat from escaping from my nearly hairless head. LOL
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j
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J - yes, the xylimelts are nasty. I ordered five packages on Amazon before I started chemo. I haven't even gone through one of the packs. It's very strange how our tastes and sensitivities change through treatment. I feel bad because my neighbour made me a big batch of homemade chicken soup on the day of chemo for each round. It's delicious and I couldn't wait to have it for dinner. But the next day, there's lots of leftovers and I just can't stomach it. I always feel super guilty but I just can't eat it. She asked me if I wanted some more broth the other night and I politely said I was okay.
I'm starting to feel human again from my final treatment last Friday. Monday and Tuesday were my worst days but I'm on the mend now.
Hope everyone is doing as best as possible.
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J - the food thing is REAL! There are some things that I just don't even want to try and know it if I even think about it. I LOVE coffee with an all consuming passion and I can't even make it in week 1 after chemo (I'm every 3 weeks). Week 2 I can have a little - if I make it SUPER creamy. Week 3 seems to be fine. I can't even think about anything tomato based or spicy. And I don't want anything carbonated or hot. Or anything super cold. Mostly, again, just the first week or 10 days and then it seems to pass - except the spicy. When I make taco meat for the family, I use my own spices and I have started taking out a scoop of cooked, plain meat and then adding in the taco seasoning, and then putting a TINY bit in my plain meat for small flavor.
Thanks for the warning on the xylimelts. I ordered some from Amazon, so I'll see when they get here!
Kris
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since I go every Tuesday now, my taste buds don’t have recovery time. I’m just staying away from the offenders. Trying to use mouth rinse the baking soda salt recipe often and it seems to help. My pain meds give dry mouth too and I’ve always tended to dry mouth and eyes. So if I’ve had any eye watery probs from I think Herceptin is supposed to cause it, I certainly haven’t noticed
Wore a wig outside the house today to the dentist for the first time, that was an experience. Glad I had on the mask with the elastic bands, I don’t think it made any difference, but psychologically it made me feel like the wig was staying in place. Lol
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j
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I did not know that about the watery eyes! I have that every morning when I wake up and I wondered. Thanks for solving that mystery.
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Yesterday was TCHP #4 of 6....blissfully boring...my favorite kind of chemo day! However, someone had the audacity to sit next to MY seat before I got in there to claim it, so I had to pick another seat!😢😠. BUT, gratefully that person left about an hour or so later and I asked my nurse if it would be okay to switch and she said yes! MY seat is the most private one there...The farthest seat in the farthest row away from the desk looking out a window. There are enough chairs in there that people spread out, so I was able to “enjoy” my day in peace and solitude, it is the little things, people!🤷🏼♀️😉 ErinPS....Hope you are all doing well!
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Erin -
Laughing about the "my" seat! I'm the SAME way! I get very salty if I get there and someone is in my chair. We are creatures of habit!
Kris
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Hi all
Just checking in to say hi. I’ve been off line for a bit, just hiding under the bed so to speak. I finally feel normal again. It took 2 weeks, but I think the awful pollen situation contributed a lot to that. I’m going in again on Tuesday so trying to psych myself up for another round of ugh plus ridiculously high blood sugar. After copious research, I’ve discovered that not only is it caused in the short term by the steroids, it’s also caused, in the long term, by the Cytoxin. It’s not listed on the side effects anywhere that I could see, but evidently it has been cited in several research studies to cause people who are “on the fence” with diabetes to fall over the side, as well as making those who already have diabetes to lose control of the disease and have to go on insulin, which is where I am at right now. I’m hoping it’s reversible.
Thanks everyone for the info on the dry, sandy, sticky mouth thing. I’m going to try to find ACT lozenges - not an easy task when I can’t go out to shop. Maybe I can get my husband to go to CVS? Amazon now takes a long time to arrive here so that’s not a good option anymore.
Hope you all have an easy week with no serious stuff happening. Next week is the summer Solstice. Can you believe it?
Xoxo
Nan
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