Starting Chemo September 2019
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I agree, better to be safe. Hugs
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Just checked off AC #1, and so far so good. Pretty tired, but that may be a function of eight hours at the hospital...
Apparently my oncologist was paying attention when I was flapping my gums about being extremely susceptible to nausea, since they had three IV nausea drugs teed up to go when I sat in the chair and three more rxs in the medicine cabinet at home. Still, I was already feeling ready for the first rx by the time I got home from the hospital. Fingers crossed that this all can be managed. 🤞🏻
I also want to say that I have been so impressed by the level or care from all of the hospital staff. There were literally people cuing up to talk to me during my infusion: nutritionist, social worker, art and music therapists, and a young woman doing a research study. So many wanted to talk to me that I didn’t get a chance to pull out any activities/reading or even talk to my husband, who sat stoically through the whole parade. It’s so nice knowing that there are so many people who truly want to help.
Okay, eyes are seriously drooping. Not sure I’m buying the wisdom from the nurse that the fatigue won’t hit til day 7. But I’m glad to finally this process underway.
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Snaffle,
I am not on AC (Im on TC) but i get the pounding heart from minimal exertion about days 3-8. I have discussed this with my oncologist and I will be discussing it again because its a scary feeling. I hope yours is nothing but please let us know what you find out. Feel better.
Jodi
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Mandamaybe
Glad the first treatment is done and went well. I hope your side effects are minimal and manageable.
Tracy
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Anyone else get hiccups? I had them my first day of TC last cycle too. Obviously in Grand scheme, minor but annoying SE. I am trying to go to sleep and am now hiccuping!
I am so tired of this crap. The entire BC thing. Someone said I had my second treatment so I was halfway done with everything. I wish. Still have SEs plus 2 more rounds, then radiation or DMX and oophorectomy, and of course the meds forever and ever. Sorry, little bit of ranting. I really want to go to sleep and these hiccups are driving me crazy!
Wish you all a good night and wonderful day tomorrow.
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Lasted 2.5 hrs past my first dose of scheduled nausea meds before I broke down and added my only “as needed” nausea meds. Was eventually able to sleep some, but now up at 4am waiting the last 30 minutes before I can take my next “as needed” dose.
Planning to treat this like any normal sick stomach day, with small doses of broth or mild grains (crackers, cream of wheat), water, ginger ale, and mint tea. Hoping my body will ultimately regulate, but a little scared this is my “new normal” for the next 16-20 weeks...
Also having night sweats and can’t shower til after my Neulasta patch finishes it work in another 15 hours. But night sweats have been common for the last several months. (My husband swears these are the pre-diagnosis symptoms that should have clued us in that something is wrong. But the nurse at chemo class was skeptical of his theory.) Anyone else have this issue?
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I am here girl, stomach cramps are horrible, diarrhea is so bad,, hugs we will make it!!
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hey all
The way I see it is we need to come up with a plan for food and rest the day of chemo and for the next 8 days from chemo. Crackers and toast, applesauce, jello, I have found the unsweetened jello tolerable , scrambeled eggs and salted chips mashed potoates even the instant ones candy Gatorade propel tea, pudding, please add anything to list. Find our days with the most tiredness mine were day 2 thru 5, just do what we have to do those days. We need to stay hydrated that means at least drink 10 glasses ,8 ozs of water daily, yuck...lol lite excercise if we can, if we cant then make up the time the week we feel better, please add any more advise, we will help each other the best we can
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mandamaybe, take those antnausea at set time work with them if you feel the need for them before they are due take it then. Take one every four hours, then one 2 hours after especially the first 4 days after chemo, this has helped me andnif you feel they are not working call your dr
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Mandamaybe
Please call your MO. Mine was adamant that I call her about any SE that meds weren’t controlling as there are other things they can do. She said not to suffer just because we assume “this is how chemo is supposed to be”. They can give you fluids, IV nausea meds, different oral nausea meds, etc.
Hugs
Tracy
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Dottybird
I got hiccups this last round, they were very annoying
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Dotty - Hiccups can accompany acid reflux so you may be able to alleviate those with acid reflux meds. I had heart burn/reflux after my treatment for about 5 days but no hiccups.
Gamb - I didn't have a lot of restrictions on what I could eat. My dietician suggested eating a plant based diet and I tried that for the first couple of days. I didn't have any nausea but I had stomach cramps no matter what I ate. I also had heartburn so I avoided spicy foods. Days 1-3 were good. Mild fatigue and stomach cramps. Days 4-8 were just bleh. Heavy fatigue, stomach cramps, irritability, mild neuropathy in my fingers and toes and diarrhea. Day 9 felt like storm clouds just dissipated and suddenly I felt good. Today is day 15 and I'm working full time. My hair is starting to shed. My scalp feels like I left my hair in a tight ponytail for too long.
mandamaybe - Glad your treatment went well and the staff at your hospital is on top of things! I had severe fatigue around day 4. My oncologist is good about letting me know that my SEs will be custom to me. It was frustrating at first because I felt like I kept being told "I don't know" and felt like I was in limbo but I understand now that everyone reacts differently to chemo. I have to say it relieves some of the worry seeing that other people do experience a lot of the same things though. I agree with Tracy. Call your oncologist with any SEs not controlled by medication.
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Manda - I agree with Tracy. Call your MO. Mine told me the same - do not suffer!
Gamb - I love the food list! I would only add chicken noodle soup. I was able to taste that and it made me feel like I was eating something of substance.
Snaffle - hope the heart pounding incident doesn’t come back! But definitely would call my MO before the 6th.
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mandamaybe - I'm on different chemo than you, but I get the night sweats, too. I have always needed a blanket on top of me when I sleep, but I've learned to sleep without one now because I would wake up repeatedly to either throw the blanket off or put it back on. Well, I still wake up a lot, but less than before anyways. The sweats are annoying.
Gamb - Like Bridget, I haven't had any restrictions on my food. I've been really lucky to have no nausea, just constipation. Stomach cramps for a few days the first cycle, but not this one. Taste buds are fried for the first 10 days, but most things are appetizing, even if I barely taste them. My favorite foods the first few days, when I'm trying to be cautious because of constipation, would be lentil soup (water, fiber and protein!) and probiotic vanilla yogurt (I can taste the sweetness). Water is gross the first couple of days, but then it's fine. I just add a splash of raspberry lemonade if I need to. We're all affected differently, so have lots of food options, if possible, or someone to run out and get whatever will work for you that day.
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Called my MO. The verdict is that I need to drink more. Especially something with electrolytes. So I’m switching from flat ginger ale to Gatorade. Really trying to push fluids now. I am to call into the office if it happens again. They seemed concerned, but hardly in a panic.
Marily
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In looking at my notes from my first 2 TC treatments, here's my SEs and timing:
Day 1 (infusion day) - headache
Day 2 - Headache, constipation
Day 3 - Headache, taste goes away, fatigue, constipation
Day 4 - Headache, aches, raw mouth, fatigue, diarrhea
Day 5 - aches, raw mouth, fatigue, diarrhea
Day 6 - aches, raw mouth, fatigue, diarrhea
Day 7 - raw mouth, diarrhea
My taste came back literally 2-3 days before this last chemo..... this time, the raw mouth came with thrush.
I've found that colace and senacot controls the constipation. Ibuprofen and Sudafed helps with the headaches. Alternating Claritin and Zyrtec every 12 hours controls the Neulasta aches. I don't do anything about the diarrhea, it's only 3-4 times a day and I'm afraid taking anti-diarrhea meds will cause constipation.
I'm hoping the next two rounds of chemo hold true with side effects. I've got SE management pretty under control right now, but it's been trial and error.
Tracy
**Edited to add, the first cycle I retained water days 15-21. The oncologist said it’s a side effect of Taxotere and to drink lots of fluids with electrolytes, elevate my feet, and avoid salt. Avoiding salt sucks because it’s one of the few things I can taste
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Thanks for the advice and support everyone. I did call my dr’s office and had a nice talk with the assistant. Since I’m not vomiting, was eating some things, and it’s so soon after treatment, she advised to keep up with all the meds and let it play out a little longer. By afternoon, I was feeling significantly better, though still fairly limited.
Incidentally, I went for my first reiki treatment at a local cancer nonprofit today, and it was really lovely. You just lay there for 45 minutes while the play soft music and use gentle touch. I thought I might get bored or start ruminating, but it was just relaxing and comforting. Once I opened my eyes andchecked to see if the therapist had fallen asleep because I heard snoring... nope, that was me. Anyway, highly recommend.
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Mandamaybe
That sounds very relaxing....
I'm a snorer, and a drooler.LOL... they'd probably kick me out
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Snaffle53, contact your MO. Such SEs are on my list of red flags/let dr know.
Cycle 2, day 3. During the first cycle I was really hurting and miserable until I went in for lab work and they gave me fluids. This time I returned for my shot (like Neulasta?) and they gave me fluids too to head off feeling bad. We'll see how that goes.
I have begun to see the pattern before me. My DH reminded me that Day 2 would be good based on the first cycle. I thought I would start to feel bad that afternoon. I looked it up in my journal and he was right. I started going downhill the afternoon of day 3. I know the overall effects are cumulative, but it seems the past is prologue. Somehow that is reassuring
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I want to introduce myself. I have learned so much from this board, and this is my first post. I was diagnosed in July, had a lumpectomy in August, and started chemo in September, docetaxel, carboplatin, and herceptin. I started Sept 9 and had my second session on Sept. 30.
I am late joining the September group, but I love the idea that we can follow along with each other on our separate but linked journeys. I had a pretty rough first chemo cycle (pretty flat out for about 9 days, then slowly getting back to almost normal, just tired). The first cycle is a lot of learning about how you react. I am trying to get in front of some things for this second cycle, and am having a better time of it so far.
I want to share a few things I learned that have worked for me.
For my second chemo I have done the Fast Mimicking Diet, thanks in large part to posts by santabarbarian (to whom, many thanks!). One of the most helpful tools I found in doing this diet is a nutrition calculator called cronometer.com. It has a very useful breakdown of macro (and micro) nutrients. I find it challenging to get 800 calories without going over the fat and protein counts, and this calculator helps me balance all of that. The information I found suggests that for days 2-5 (800 calorie days), the fat should be under about 20g and the protein 18-20g. Sugars 10-20g (and I think no added sugars at all). The diet also suggests high monounsaturated fats and low sat fat, lowish polyunsaturateds. Thus avocados, olives, some nuts.
So far, my gastro side effects have been substantially improved this time. I also got ahead of constipation and cramping from the meds this time with Senokot-S (stool softener and laxative together), though the diet may be a helpful factor with that too. I am being more proactive with the nausea meds, too, as vomiting last time made everything worse.
I have also been taking L-glutamine. I learned that here on the boards, also, much from SpecialK, I think, and others. It seems to be helping a lot with the sore mouth and intestinal tract—reflux-like symptoms I had last time. One of my onco pharmacists recommended against glutamine, saying it might act like an antioxidant, the other said it was ok. With my own research, I decided the benefits (for neuropathy and mucositis) could outweigh the risks. My NP said that if I continued having such a rough time they would back off on my dosages, so I am weighing that too as I go through this second cycle.
I am icing my hands and feet (and mouth) during treatment, but my first cycle I kept forgetting to replace ice in my mouth (I did better the second cycle!). The gloves for icing are very expensive on amazon. I decided to use old-fashioned ice bags (the kind you see in movies from the 40s to indicate hangover!). They are not expensive, and I put medium (9") bags under my hands and large (11") over top. I like "Ohuhu Hot Cold Ice Pack Reusable Ice Bag 3 Pack [11" 9" 6"] Hot Cold Therapy for Knee Leg Injury" on amazon, though the little (6") ones don't seem so useful, a little small for this purpose. But I think the three packs are still cheaper than sourcing the larger sizes separately. They do a great job of keeping the hands cold. It helps to corral the ice packs in some kind of bag so it is easy to slip the hands in and out for adding more ice chips to the mouth... I sewed up 12" fleece bags, but I think any kind of bag the right size would work. I don't find I need gloves, but do take a thin pair in case I want them.
For my feet, I did buy the socks with inserts (Natracure), but the cold packs don't seem very cold for long, so I put an additional flat gel pack under my feet and a large (11") ice bag over each foot. I corral them with large-ish wool or fleece hats so the ice bags don't fall off when I move. The socks/inserts may be helpful for the heel, which otherwise would not get iced (but I don't know if the heel is crucial anyway?). If I had it to do over, I probably wouldn't bother with the socks and inserts.
The other thing that has helped my quality of life is something I started just before surgery: guided meditations. I listen to them mostly at bedtime, and they put me right to sleep. It's great not to have the hamster wheel of my brain running when I'm trying to sleep. I subscribed to something called Health Journeys. They have a 7 day free trial and a number of cancer/chemo specific meditations as well as others for sleep/pain/fatigue/etc. I think there are lots of totally free options online also. I start one on my phone and get into sleeping position, and it just stops when it's done, and I have almost always fallen asleep by then. Sometimes on the steroids I have to play a second one to fall asleep.
Sorry for the long post, and greetings to all, and hoping for the best for all of us as we go through this.
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tmh - no no no, they LOVE it if you snore and drool, trust me.
clackie - welcome! my brother tried to tell me about guided meditation and all I heard was “blah blah blah", but it sounds like it's worth checking out. Thanks! and it sounds like you are working through solutions in your second cycle, which is all we can really do. Good luck!
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I just wanted to stop in a say I'm thinking about all of you and you're in my prayers daily. Welcome to the group clackie! Tracy and manda, I'm also a snorer. My partner reminds me almost nightly...
Did any of you have a serious dread of your second treatment? Mine isn't until the 11th but I find myself wanting this week to drag out because that's just next week. I think part of it is because I went from my mastectomies straight into chemo 6 weeks later and I forgot how it felt to feel "good". Now that I do I don't want it to end.
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hey all
Brilee I had my dmx August 1st first chemo September 12th , all with the speed of lightning. Somewhere in all that haste ive been searching for me, I see her at a a distance, 14 treatments left to do maybe she will move closer
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Bridget,
I had my second treatment last week, and yes I dreaded it. With the first, I was nervous but ready to get things going. With the second, I was just feeling normal again and really wasn’t looking forward to it. I was just thinking last night how I’m really not looking forward to the next one.
My side effects have been relatively “mild” and better than what I anticipated before starting chemo, but let’s be real. I still feel like crap for two weeks after treatment. Then, just when you feel somewhat normal again, we start over.
I just take it one day, one treatment at a time. Once chemo is done, I’m starting meds to shut down. My ovaries and then an aromatase inhibitor (AI). I also have to finish getting my tissue expanders filled, then exchanged for the real implants.
This leg of my cancer journey started with a mammogram in April, an Ultrasound in April, An MRI and biopsy in May, diagnosis in May, then my BMX and first round of reconstruction in August, and Chemo in September. It all seems to drag on. By the time I have my final surgery, I’m sure it’ll be close to a year of this mess.
I’m with you, I just want to feel well and normal again.
(((Hugs))))
Tracy
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Welcome, Clackie!!
Snaffle - so glad electrolytes we’re the answer! Drink up!
Manda - that treatment sounds so relaxing. I’m a snorer too and I was afraid to fall asleep during treatment 1 because of snoring!
Yesterday, about 2/3 of my hair came out. I have really thick long hair so it was A LOT!! I picked up my wig and tried it on for my family. They were supportive but when I look in the mirror, I see me in a wig - even though the wig is gorgeous. That’s my next hurdle to overcome....feeling comfortable in a wig. I’ve also purchased some fashionable scarves to wear in case I’m just not feeling the wig. I just want to avoid looking sick or people feeling sorry for me.
I found a neat saying I wanted to share with my September chemo sisters:
Chemo
It’s a tough cure for a big, bad disease.
It’s caring so much about life and those you love that you are willing to put yourself through the wringer.
It’s remembering that with every passing minute, every day that goes by, you’re that much closer to being done with cancer!
Enjoy your day, ladies!!
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Maggie
I LOVE those shirts!
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My work family!! when I told them I had breast cancer, I have got this, (we have been together for years, marriages divorce, illness, tragedy, babies teenagers, death of parents) the look on their faces when I said breast cancer!!! Broke my heart! So I kinda got upset and probably said the f with the wrong bitch, I don't know, so the girls had shirts made, a couple of them are missing from the photo, I am so blessed, this salon has been in business at this same location for 40 plus years
Cancer has messed with the wrong bitch
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Maggie - Love the shirts and how supportive your work family is!
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Thank all y'all for the welcome. I'm glad to be here. Reading has been so helpful, but posting makes me feel present!
Brilee, I totally get the dread of #2. It's so hard to go from feeling good to putting yourself through it again. But, your second treatment might go much better than your first. It is for me, because I know how I reacted and am getting ahead of the side effects much better. I'm tired and not up to much, but I feel pretty good (and SO much better in comparison to last time).
mandamaybe, I didn't think I would go for the meditations, but someone recommended the pre-surgery one, and I guess there is evidence that it can improve outcomes, so I gave it a try. I liked it, so I just went for it with the others, and now they are helping me so much with sleep, and with anxiety and stress also. Honestly, I often start to fall asleep almost as soon as they start talking (but apparently that liminal stage between waking and sleeping can be the best for getting benefit from the messaging).
Maggie, your work family is amazing with the shirts. Awesome.
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