Starting Chemo December 2020
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Day 3 for me. Doing okay except for awful indigestion. Chew, swallow, hiccup, repeat. It sucks because they are pretty painful. Makes it a challenge to stay hydrated. Doing my best though and managed to get some light housework done. Now I'm pooped out. My scalp feels funny too. If this is the worst of it, I'll take it but can't wait to feel like me again. Smoothies have been the best tasting thing and goes down a little less painful than just water.
Hope you all are hanging in there.
Nicole_bei, make sure to take your nausea meds and keep that beast away. Sending you positive vibes that tomorrow will be better for you.
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I feel pretty good today! A weird thing that helped with mouth pain was not using a straw! I almost always had a metal cup full of water with a straw pre-cancer. I stopped using the straw and I know it sounds weird but my mouth feels better. My gut feels better today too. I know they lowered some of the drugs and now I am grateful. Now if only I could sleep through the night. Any tips? Usually up from 2:30-4:30 even with sleeping pill or Ativan. Maybe my naps are too long? Love my nap!
Added a smoothie a day to get some fruit and veg in. Got a craving for Mac n cheese. Hope it tastes as good as it sounds. My poor family can’t keep up with what I will eat.
Hope everyone is having a good day!
Lis
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Hello all. I am getting four rounds of dose dense AC every other week, followed by 12 weekly rounds of Taxol. First round of AC is tomorrow. I am super anxious about all of the side effects.
But... am looking forward to being through this and making new virtual friends! Let’s get rid of this beast together!
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Hi ladies! I’m here from the July chemo group, I finished 6 rounds of TCHP, and wanted to drop some of my tips for hair. I didn’t have a choice to cold cap, and my doctor said it wouldn’t make a difference anyways, the hair was coming out. I did not lose my lashes, or brows...they did though, get thinner. As far as my hair, I had it cut short, and between round 1 and 2, the hairs really started falling out, it was everywhere in my shower. I had my hairdresser come and buzz it short using a guard. Then, I used a sticky lint roller for a few days before showers to help contain some of the hairs. All of my hair didn’t fall out, but most of it did. After a few weeks, I took a razor (one of them wrapped in soap) and shaved the rest of my head. It just looked better completely shaved. Once I cut it all short and used the lint roller my scalp was not as sensitive. I found that using a satin pillowcase was really comfortable. Now, I live in a cold climate, and wear the soft CC brand beanies, and I have a fleece lined under Armour one I wear that’s really comfortable. The soft knit turbans are also nice and comfy. I still shampoo my scalp in the shower, you get a lot of oil buildup since there’s no hair to soak it up. Also, I would use the same moisturizer as my face if my scalp was feeling dry.
Lots of hugs and good vibes to all of you ladies on this journey
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Hi December friends. About to do #3 weekly taxol.
Hair still hanging in there, but my scalp has been tingly since the first few days after starting. It's my biggest dread and current biggest source of stress, and my hairdresser will see me privately on Sunday to buzz me. I have fun wigs and my real wig at the ready, but as prepared as we think we are for this, I don't think many of us are ever truly prepared. My armpit hair flew the coop silently and without a trace at some point. I'm glad to have experienced that first as a reality check that my head is indeed next
I have few complaints apart from that. Constipation has been awful, but a morning and evening Colace and lots of water seem to be keeping that under control. I had been cautious about laxatives after the first infusion because I didn't want to induce diarrhea, and I especially don't want that hitting when I'm out on a walk
The backs of my hands are leathery and I have some pimples on my upper back now. Aquaphor ordered and in the meantime I've got coconut oil and Bag Balm. Heartburn has started to show up, but it is mild.
Taste buds still hanging on, and I'm in complete denial about them going. First I'll deal with hair, then I'll deal with that
Good luck to all of us as we navigate these SEs during the holidays.
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RMayfair201: Thanks for the advice. It feels so much better today. It may have been that or maybe the incision is so close to the bottom of my throat area.
I had my first of 4 TC chemo sessions today and it went OK. The access part of my port is really clode to the incision so that was a bit painful. I LOVE the warm blankets! The cold capping was pretty bad, but I was able to tough it out. The worst part was the ice packs on my hands/feet. For some reason I had a lot of pain in my fingers that never went away for the whole hour they were on. It took them a while to warm up, too (afterwards). The last 3 hours of the cold capping I got a horrible headache, but it was relieved with Tylenol. All that is worth keeping away permanent hair loss and long term nerve effects. I have not felt bad otherwise, so far. I call that a success for the 1st day of round 1! Taking it one day at a time!
We are all warriors!
Lisa
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Thanks for the tips! I shaved my head with clippers, then an electric razor then my daughter shaved me with an intuition razor. Then I rubbed coconut oil on my head!
I feel like it acts like velcro when I try to put a hat on. I was surprised how I looked. Still catches me off guard when I look in the mirror. Lis
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Hi , I am new to this thread, i have been living with cancer for almost 14 years and will be having my second of 12 weekly taxol infusions today after xeloda failed me.
The first round I mainly slept through , I react strongly to anti histamines and the alcohol in taxol ,as I am not a regular drinker. The cold cap gave me an intense brain freeze headache for 10 minutes initially, but was bearable after that. By the end of the session I felt drunk; brain fog and wobbly. I went home and slept for a couple of hours and woke up sober. I then stayed awake for 31 hours, I react strongly to steroids too!! It was quite pleasant ,I felt like wonder woman and had lots of energy and no pain. When I came down, I got a bit fatigued and mouth ulcers, which suppressed my appetite , so I had a few meal substitute drinks. No hair loss yet!
I am eating normally now, but am interested what will happen today, fingers crosses it is tolerable again.
Thanks JulesFL for starting this thread, I was looking for a place to feel comfortable.
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hello team，
Could I ask what you drink after chemo? My doctor suggest drink 8-12 cups of fluid, but water taste nauseas.
What else could I drink?
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hey nicole, I've been drinking Hint water, sometimes mixed with pedialyte. Popsicles have been good too.
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Hi Nicole. I also have a hard time drinking enough water. Recently I tried adding a splash or two of coconut water to regular water and it helped me rehydrate.
I did that for two days and got all nice and rehydrated and now I am really sick of coconut water.
I've also been experimenting with Nuum tablets which also have electrolytes. I don't love them but maybe I drink a little more water? One tablet per water bottle was too strong for my mixed-up tastebuds so I cut them into quarters. Good luck.
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Nicole -
So weird that water makes us nauseous! I definitely have to drink filtered and even keep a glass of filtered in bathroom. Nothing fizzy tastes good. I had an iced tea today which I enjoyed. Coconut water is a nice break but sometimes I hate the thought of that too.
Ms Murphy - I should try some Hint. We are only using Instacart here soit may be a day or so.
Sharon -
Never heard of Numm. Sometimes I drink part of a chocolate Boost just to coat my stomach. Or cool jello just to hold in my sore mouth.
Denny - each chemo is so different!. Glad it wasn’t too bad and you can eat normally!
Have a good holiday week everyone!
Lisa
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Hi nicole_bei, yes, water is to too drying, it's bizarre. My team said as long as you drink lots ,you can drink anything ,apart from alcohol, that you find pleasant, milk and shakes are some of my favourites, but flavoured teas [with a sugar substitute like stevia, if you are worried about teeth or weight gain] are a good option with lots of choice of flavours. I make my own fresh ginger and lime tea. How about a miso soup ?
I hope you find something that suits you.
Chemo today was much the same as last time ,but it did not feel as extreme as I knew what to expect. I was given fluconazole as the oncology nurse thinks part of my mouth problems are due to oral thrush, fungal infection, apparently a side effect seen with taxol.
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During chemo, I had horrible loss of taste, and could not even drink water. I would go in a week after my chemo for fluids 3 times. Adding sliced fruits like lemon or strawberries made water tolerable at times. Drinking it ice cold out of a plastic straw and a glass water bottle also helped. I ate lots of cantaloupe and watermelon. Watered down Gatorade zero, or cranberry juice was also tolerated at times, all with lots of ice, drank thru a straw.
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hi all. Had my first round of AC yesterday. All was fine until about 5 pm when i got super nauseous and chills/hot flashes. Ended up taking one of every anti-nausea med in the kit. Feeling less nauseous this morning, but have a screaming headache. Hoping the Tylenol helps.
This might be tough, but I sure am glad to be getting these life saving meds. Hang in there! I know we can do it
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Does anyone else feel like they have the knees of a 97 year old? I'm feeling so much better today other than just soooo weak. If I have to stand for more than 5 minutes, my knees feel like they will collapse. I hope this goes away soon. If not, I'll be moving a stool in the kitchen while I cook.
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Thank team.Hope everyone have a good holiday even with SE. I feel better today. Made some Korean soup for myself. Had some yogurt and fruits. I found I like something spicy and cold...Hot food smell nauseas..
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nicole_bei: impressed that you can cook! I’m having enough malaise that I just don’t want to eat. I did manage a scrambled egg with ketchup. Seems like more acidic/sharp flavors cut through the chemo nicely.
Hope all have a wonderful Christmas!
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Hi Nicole. Ginger-ale was my drink of choice when I was going thru chemo (AC/T Jan 20-April 20). Also found that soda-water with lemon or lime was good and for some reason, I preferred drinking with a straw. Before I started chemo, a friend of mine who had been thru chemo 10 years ago had suggested that I go to store and pick up one can/bottle of several different sodas/flavored waters and have them on hand so that I could have a selection to choose from when my stomach didn't want water. Now - with chemo and radiation behind me, I still keep ginger-ale on hand because every now and again it is the only drink that sounds good
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Rabbithead, make sure you let your doctor know that you have felt nauseous - they have an arsenal of anti-nausea drugs that they can give you, but they can't prescribe unless you ask.
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Thai food also a good choice if you have no appetite..since they have something sour and spicy... I have several anti-vomiting medicine, but still felt nauseas...and no appetite in first week
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Hi everyone, my name is Sylvie, I'm 49 and live in Quebec, Canada. Thank you for sharing your journeys, it makes it easier going through this together (even if it's virtual!). I'm finally ready to share too.
I was diagnosed on October 19th, got a DMX on October 29th and had my first chemo (Docetaxel (Taxotere) and Cyclophosphamide plus Trastuzumab) on December 3rd. My second treatment was on December 23rd - 2 out of 4. I have HER2+ BC with multiple grade 3 tumors, biggest 1.7cm, so after chemo I'll continue for the remainder of a year on Trastuzumab (Herzuma).
The first round was hard for me, I think because I wasn't really ready, as I was still digesting the diagnosis, the operation, trying to understand the treatment regime, and not knowing what was coming with chemo. I also had a very hard time accepting hair loss, which I didn't expect of myself (neither that I'd be very emotional). But the second round is a lot better. Same symptoms so far, but I'm ready this time; and I take what drugs I have to feel better, I also take it easier and rest sooner. It seems that my mental state is really helping me physically.
Symptom-wise I was tired the first few days, and also nauseous but I have fast working pills for that (prochlorazine). The dexamethasone had made me wired, but now I take Lorazepam (Ativan) for the first three nights to compensate. I have the weird taste, and a long list of mild symptoms: dry itchy skin (didn't surprise me as I have sensitive skin), sore throat, painful tongue, my weight is bouncing all over the place, mild diarrhea and cramps, dry eyes (reduced vision), nosebleed, congested, minor headache, minor chills, muscle soreness, brain fog, sore inner ears, runny nose, clumsy, mood swings, tooth soreness, longer bruised, longer healing. They seem to pop up, disappear, come back, but all in small doses. Feels like 10 mosquitos but all doable, like 1 or 2 out of 5 in discomfort. A bit exhausting at times as I don't know what the next day will bring, but this round, Tylenol is my friend since I have no fever.
On the plus side: no serious SE so far, lots of support (family, friends and oncology care team), a beautiful wig and prostheses, and I keep reminding myself that everything - good or bad - is temporary. Obviously not a journey I chose, but making the best of it - as a bonus, I rediscovered my love of playing board games! In summary, my mental state is helping me get through this, I'm trying to be gentle on myself, I do breathing exercises and walk every day, spoil myself with favourite snacks and I keep a journal. Looking forward to reading more about all of you.
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Hi Dogsnhorses, sorry you have to be here, but you seem to be caring well for yourself. It does help that you have a good support network and I am sure the contributors here will try and help too. Keep as positive as you can, not always easy ,we all have bad days and it would not be 'normal' if you didn't. It's good you have found a distraction with board games,keep pampering yourself!
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Thanks Denny10. Yes, getting used to a lot of new normals - including bad days and no guilt pampering :-)
Wishing you a fabulous 2021!
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Happy New Year y'all! Had my second TCHP infusion just this Monday, finally managed to pop back here. Mostly frequent Facebook groups, especially HER2+ and triple-positive.
Feeling remarkably good, under the circumstances! Got hit with the dreaded diarrhea on the first round, the night of day 5, but managed it with Imodium. Mayo FL has me in a clinical trial for diarrhea, so we'll see if the experimental medication they're giving me will help. First cycle I took two Zofran on day 3 and one on day 4, to manage the nausea. I hate medications, so this time I've managed to avoid Zofran and have kept my queasiness at bay with home-brewed fresh ginger root tea.
Otherwise my side effects have been fairly manageable. With the approval of my doctors, I stop food consumption about 13 hours before infusion, and continue not eating through the whole day after. No way to know if it helps, since that's all I've ever done, but emerging clinical trials around fasting and chemo are promising.
Cold-capping with Paxman, haven't experienced any shedding, but kinda waiting for it, based on what most women experience.
Met with plastic surgeon today about reconstruction options. Ugh. So do NOT want to deal with surgeries, recovery, etc. But cancer sucks and we do what we gotta do. At least I have until about April to make those decisions.
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HAPPY NEW YEAR
I hope 2021 is an improvement for us all, it wont take much!!
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Hello Nicole,
I started chemo without a port. Yesterday was my 2nd treatment. My veins are ok and the nurses are great at finding ones that even I would hesitate to use( I'm a nurse). So far, I don't seem to need one though I will have 8 cycles ( 4 cycles with 3 infusions each and 4 with one infusion). Will be having surg in June or July, then radiation, then perhaps more chemo.
Happy New Year all!
Gretchen0 -
Hi Jules - interesting to choose to fast, it is known to be good if you have the flu as the digestive tract doesn't take away energy from the body recovering. While for a cold you're supposed to keep eating. I have increased appetite and each round I lose about 5 pounds in 5 days - so I'm eating as much as I can tolerate. Funnily ginger makes me nauseous, but anything else seems OK. I love ramen soups.
Hi Denny - even if 2021 just turns out average it will be a great improvement, and I'll take it!
Hi Gretchen - I don't have a port either. First time the vein in my arm was fine, second time (other arm) it left a big bruise for about a week. I have 4 cycles with 3 infusions and an additional 14 with 1 infusion (but those will only take about 30 minutes).
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RabbitHead,
I have the same treatment plan as you, round 3 of Taxol will coming Tuesday. Just wanted to let you know symptoms vary for everyone. For AC I only had nausea the first night after infusion. Mostly GI distress - diarrhea. Keep up on the meds if you need them. They help! I lost my hair on any 17. Each of the 4 cycles was different. Fatigue is real. But by the end of the 4th cycle, I felt pretty good. Good luck to you! I have a blog started at: jujuscancerjourney@wordpress.com for more detailed info. Wishing you good luck with treatment!
Julie
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hello gretak2，
Thanks, I finished two AC with IV. so far so good. What regime are you in? When to check AC is effective or not. I kind of worry about whether the chemo is working for me ...
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