Starting Chemotherapy March 2018
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Bec-Ky~ Thank you very much! Good luck on your Journaling hope that helps next round
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I have been following along on the site and can relate to so many of you. I am on Day 6 cycle 2 of TC and I can definitively say that Days 3-5 are the worst. During the 1st cycle had aches and pains...almost flu like and then those blasted back spasms...ouch! I am taking Claritin but I also took an Alleve on day 3 and 4. I went straight to Tramadol with the back spasms - only for one day. Fortunately by day 6 everything subsided and I was feeling stronger each day until....Cycle 2. No back spasms this time, but just more fatigue , aches and pains. However, this time, I did have swollen feet and wrists which went down by day 5. I'm beginning to feel stronger, but I am hoping that the next two cycles do not bring new side effects.
I lost most of my hair day 15-16 of cycle one- looking like Yoda minus the ears. It is a bit of a shock at first , but I've been trying out a lot of new looks now. However, I must say that my head has been extremely tender. Purchased a bamboo cotton sleep caps and bamboo cotton wig cap. It feels so much better than placing scarves directly on my head and is much better than the regular wig caps. I have only been wearing wigs to work...and special outings, but I think it's going to be hard to wear them in the summer. Once I get to my car after work, I want to fling it off.
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May07 omg I’m dying for a glass of wine. My husband and I are going out for our anniversary’s the 14th and I don’t care.. I’m having a glass at dinner. Moderation! 😬
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Steph--I was told it was fine...
I saw another poster say that their oncologist said no....
I work in a hospital, and a nurse I work with currently used to work over in the cancer center...and was telling me that patients regularly asked about alcohol intake during chemo and she said it was fine. And the oncologists said it was fine most of the time. Of course remember it depends on the type of cancer, and your history.... Etc.
🍷 Enjoy!
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bec-ky funny you say about the appetite im the same way...have had a very good appetite and I have been eating whatever I want, and I also used do a very strict low carb, high protein diet and used to work out 3-4 times a week....I’m now on what I like to call Chemocation.
I actually asked the oncology nurse about drinking wine and she said no, then after a little negotiation she said I could have half a glass 2 weeks after infusion. She said the liver has so much medication to process you don’t want to add alcohol to the mix....buzzkill lol. So I just decided to stay away altogether for now.
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That's true. The poor liver.
😂
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Ladies - chiming in on the wine question!
My onco nurse actually was the one to raise it in my pre-chemo visit - said after about 10 days, fine to have an occasional glass or wine or even a cocktail. I was surprised and she said she wants her patients to be able to enjoy their good days. Not every day, and certainly not a lot.
I have taken the advice and had a few glasses of white wine between infusions 1 and 2. Now between 2 and 3, had a little more white and one glass of prosecco. Interestingly, I tried a sip of red and taste is just completely off for me. For that reason alone the thought of a cocktail is not appealing, but the occasional chardonnay is calling me....
Eating yes, the cravings for food you would never think about are weird. Last night I had Kentucky Fried Chicken Mac and Cheese. Scary....
Infusion # 3 next Thursday and I will try to sneak in one more before starting the steroids again. Then on the wagon!
Cheers.
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I've also had a good appetite. At first, all I wanted was veggies and meat, and couldn't stomach any breads, rice or pasta. I was so happy that I was wanting healthier foods. Now, I find myself craving things I normally don't eat. Lots of sweets, especially cookies, and Italian food (I like Italian food occasionally, but usually only once every few months). My nurse said that I should make sure to wash my fruits and veggies really well, but that I didn't have to worry about boiling them unless my blood count was especially low. She said it would be best to avoid eating veggies from a restaurant, but I forgot a couple of days ago and had some kale salad from Chick Fil A, and thankfully, everything was OK. It's funny...I never forget that I have cancer and going through chemo, but I do forget that I have to be more careful with germs, bacteria, etc.
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Also chiming in on the wine - My MO told me I could have whatever sounded good to me, and I am a regular wine drinker. I had a glass the day after my first infusion, (figuring my bad days were yet to come) and that night I had the worst stomach ache - not sure if due to the wine, but staying clear of it this time. I tried again a week after infusion, and my usual red just seemed to have more of a burn - like it was bourbon. By 2 weeks, chardonnay was tasting good, and I had a glass of red on Easter. Not that cutting back on my wine consumption is a bad thing, but c'mon!
A friend mentioned this chemolieve diet they are studying at Mayo and USC. It is a fasting mimicking diet, which is supposed to protect your healthy cells and make your cancer cells more susceptible to chemo. It isn't available yet, but they have a meal plan that seems similar called prolon that I did this round. First day is 1100 calories, then 850 a day after that. I made it 4 days. I lost 5 lbs, but not sure if I want to do it again. I wasn't really given any diet recommendations as far as things to avoid. Good to know about the sushi - I love it and my mouth started watering thinking about it. Guess I will have to wait.
Hair started falling out around day 16 - similar to what others have posted. Shaved my head on Easter. Now I lint roll my pillow every day. I swear only my gray hairs are left. It has really sped up my morning routine. Packed up my blow dryer and brushes and hair products - won't be needing those for a while. Hoping I keep my eyelashes and eyebrows.
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I'm not a big drinker but I do enjoy a glass of moscato or a margarita. Since starting treatment I haven't had a craving for either. My MO hasn't given me any type of limitations but I have a bunch of people telling me to try a alkaline diet.
I'm doing weekly treatments and I'm on day 2 of my second round. I'm so worried about losing my hair, when it's going to fall out, & how will I handle it. I have always had long curly hair and finally cut it short in anticipation. Still deciding on a wig. I know some don't like wigs but I have small kids and don't want to scare the kids at school with a bald head and bring more attention to my kids. Also hoping to keep my brows and lashes.
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Chiming in on wine--my favorite subject! My ONC said it was okay to have wine in moderation. I had champagne and wine for my birthday which was 5 days after first infusion. I'm planning to have a glass of wine tomorrow at a dinner party. During chemo I'm not drinking a glass a day like i used to. I am enjoying a glass here and there on special occasions. I love wine too much to give up completely.
Cravings for me: Mother's circus animal cookies. They are my guilty pleasure while on chemo.
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Hi everyone...new to posting but have found this site and discussions so helpful. I have been following along with different topics and decided to join in the conversation of this group as I started round 1 of TCH on the 19th and will have my second round(total of 6 rounds) on Monday.
Some things I experienced the first round and some things I’m hoping to avoid this 2nd round. Felt great days 1-4 after treatment (definitely ran off of the steroids for those few days). Bone pain from the neulasta hit on day 5...mostly in the form of low dull back pain, but the overall hit by a truck feeling was definitely there. Took the Claritin as prescribed starting day 1 and I didn't really see a difference. Broke down and took Tramadol the night of day 5 to try to get some sleep (after a Epsom salt bath which may have actually helped more then the tramadol). Night 5 also brought the “sour belly". Never nauseous and still had an appetite, but definitely felt some reflux and just and overall acid feel. Day 6 brought more of the same GI upset but it was beginning to become just overall abdominal pain. By day 7 I was doubled over, no longer able to eat anything and had spiked a fever. My Oncologist and where I receive treatment is 2 hours away, and they had me report to my nearest ER for the temp. Blood draw revealed WBC's below 2,000 so I was admitted for a neutropenic fever and given high dose antibiotics until blood cultures came back clear after 48hrs. There was never an explanation for the pain (abdominal CT and pelvic U/S came back normal) and they chalked it up to the treatments. After doing some research I found that abdominal pain is sometimes experienced from the carboplatin and because of this my MO will be lowering the dose of that med for the next round. I just wanted to point that out for anyone else going through a similar cocktail of meds. Hoping that no one else has to suffer through those same symptoms. I also plan to start eating a very bland, non acidic diet the day before my next treatment and continue it though the week. I added some culturelle and Pepcid to the medication regimen too. Although the bland food shouldn't really matter because by day 12-13, food no longer has taste. And I LOVE food. I've read that some people report a metal taste, but honestly for me it tastes as if youveburned your tongue and tastebuds with something hot. There are small hints of the foods taste, but overall it's tasteless.
As for the hair, my fist big clump came out in the shower on day 14. I had cut my shoulder length hair to chin length before my surgery, in an effort to ease into the hair loss. I had decided that pulling out long big clumps was something that I didn't want to experience again, so on Easter Sunday my husband and teenage daughters took turns giving me a buzz cut with clippers. It's now day 20, and the bald spots are starting to show, so this Sunday we will shave it completely off. I have some hats that I really like and have finally settled on a wig that will work, so I will be trying those out next week. I really thought that I was prepared for the hair loss, but I still cried with that first big clump. I hated to be so focused on it, and now that’s it’s happened, I’m ready to embrace it and move on.
Wow..sorry for the crazy long post..just felt like I needed to catch up with the rest of you. I look forward to reading more about everyone’s treatments, gleaning tips and tricks for getting through these side effects-knowing that we can get through it together. So thankful to find this message board.
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Ahhhh wine... 🍷 , how I miss my wine! I've not had any since March 12th, and won't until chemo is done. Yesterday's chemo gave me a new side effect of heartburn/acid reflux, so I know booze won't help. Ginger beer is my daily drink now- a lil lime added is yummy too.
I like the chemocation term that May07 used. I craved red meat last week, had the best tasting cheeseburger ever, and felt pretty good so maybe this toxic stuff depletes something that red meat replenishes.
On hair and stupid comments from people: it stormed here today so I wore a knit hat. I still have my one inch cut with longer bangs, as I wait for the balding (day 22). Someone at work who doesn't know my current reality looked at me with her nose scrunched up and said, "I like you with your curly hair all around your face." I resisted saying, "Yeah, me too! And nobody asked you!"
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I'm a huge wine lover too and I didn't even think to ask my dr. about it... (the reading material I was given just says to "limit or avoid" alcohol during treatment)... but I'm with most of you in that I didn't even want it at all during the first 10 or so days after treatment. Now that I feel back to normal and my tastebuds have returned I'm starting to crave it again. I'm all about moderation.. having a glass or 2 of wine now and then in the 2nd or 3rd week feels ok to me.
I had weird cravings and aversions in the week following my infusion, it was kind of like being pregnant in a lot of ways.. lol. But overall I'm trying to eat healthier/organic and stay away from the junk food. It's also forcing the rest of my family to eat healthier too so I feel good about that.
I am obsessing about my hair and waiting for it to fall out. I keep thinking my scalp feels sore, but then it goes away so I'm not sure if I'm imagining it. Almost every night I have a dream (nightmare?) that my hair is falling out and I see myself bald and get upset. I think once it actually happens I'll be ok, but the anticipation is making me anxious. I'm on day 13 now so I figure it could start going any day. I am prepared with a nice wig, hats, scarves, etc... but I know it's not going to be easy for me. I was debating whether or not to just have my husband shave my head tomorrow so I stop worrying about it. The hair on my legs, armpits, etc. has not really grown back at all since shaving last Saturday. Just a very fine stubble. Normally by this time I would look like a gorilla! lol
Hope everyone has a great weekend! xo
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Am I the only one feeling depressed today? This is day 11 for me. Just still feeling lousy and wondering if I’m ever going to feel good again. I hate getting depressed and the weather today doesn’t help.
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Quilting - hopefully you have some better weather and some really good feeling days to get you rejuvenated. No matter how awful it sounds and how much work it sometimes feels like.... A nice short walk outside can help you feel somewhat better. But... You WILL FEEL GOOD AGAIN! I know this. ❤️
And if it's impossible to walk outside... Maybe start a new craft. I've been painting rocks that a group in my community places around the fox valley. And people find them and post pictures... Keep them or rehid them. It just passes time and is fun.
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Steph, I was saying the same thing about my hair. Just shave it so I don't have to deal with the drama of it falling out.
I cut half of it off, to get ready for it... But I hate it so much I almost can't wait for it to fall out! Isn't that rediculous?!
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thanks Becky for the words of encouragement. I need to try to start a small quilting project. It’s just been so long since I’ve felt really good. Before this horror, i was never sick and hardly ever had to see a doctor. Im trying to stay positive but already dreading the next round.
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Quilting. I hope you feel better very soon. Today has been a good one for me. First time my belly feels normal, but lunch still tasted odd. I’ve been sewing, made a little denim bucket hat that I embellished with three lines of hand embroidery along the crown. Somehow, it just feels a little more productive than knitting to occupy lazy time. I have also tried to walk each day. Must say i’m already dreading the next go round.....
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Jstarling it’s great you are sewing! I bet the hat turns out really cute. I should look and find a hat pattern that maybe I could figure out. I’m feeling a little better. Up and downs. We will all get through this together. It really makes a difference having this group to help each other get through this
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Happy Sunday, everyone!
Sharing an SE story in case anyone experiences something similar - last week while feeling good I went to dinner with the family on Wednesday night (food was kind of salty), and then on Thursday did a "girls lunch" with my mom, my aunt, and my cousin - food extra salty. That's also the night I had the KFC - my son has been asking for it for weeks. So on Friday afternoon while getting ready to go pick up my son from school - I can't zip up my right boot over my calf. Kept fussing with the legging/sock, thinking, what is going on? I wore these for the past 2 days....!
Finally I gave up and looked down and realized my right calf was significantly bigger than my left one - like all of a sudden a different leg size. It was also hard and tight. So on the way to get my son I called the onco nurse who immediately said - you need an ultrasound right away - you may have a blood clot. So I pick him up and drag him with me to the ER, since the cancer center had no appointments and they didn't want me to wait. Instead I went to the closest flu-filled ER (New England...love the weather) and waited in the hallway with a mask on. A very kind triage nurse found a doctor who would write up the US order without me being seen, but it still took quite a while. The tech did a very extensive US scan - no clot, thank goodness. The result - very likely severe edema due to - you guessed it! - too much salt. The irony is I never use salt at home, and never use prepared or pre-packaged foods either. I have hypertension and so I am on meds and water pills already. (Doc also said it "might" be lymphedema but the onset on the opposite side and in the leg would be odd, particularly as the other side was fine, so he was pretty sure it was too much sodium).
So the moral of the story is - no more KFC for me and when I go out for lunch or dinner I am "that woman" who tells the staff no salt and drives the kitchen crazy. By Saturday the calf was down and today it is normal.
On reading up, it seems that this is a fairly common SE from certain regimens, and particularly my good friend Taxotere. I am grateful that I am already on the steroids prophylactically or who knows what would happen at the time of the infusions? At any rate, hope no one else experiences this.
And it's Sunday, and it's Day 18 for me, and so I can say that today is definitely not a Mocktail day. There will be some sort of festive beverage to celebrate my being able to wear my boots again.
Cheers!
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Hi everyone,
I feel back to normal, I’m just anxious over the hair thing as I’m 14 days out. I am cold capping so I hope to keep as much as I can. My middle fingertip on my left hand is sore, which is odd, but it’s subsiding.
I heard from other women that the anxiety of the hair thing is normal and it gets better after the big shed. The anticipation is the worst part. I’m hoping I have success with Cold-Capping
I hope you all feel good and enjoy the rest of your weekend
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May-I hope you have luck too!
I am on day 3 of feeling almost 100% back to my normal self! And I'm so thankful!
My intermittent fmla was denied because I have exhausted all my hours. I apparently only had 2 weeks, and have not worked enough hours anymore to Qualify for 12 weeks.
My only option, rather than trying to work with 0 absences, is to take a 90 day leave of absence. And so that's my plan. I'm going to take it beginning on my next (2nd) chemo date. April 18th. I'll be able to use my short term disability and at least get some pay.
Hope everyone is feeling good!! ❤️
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bec-ky I think you made the right decision there. Now is the time to really really take care of ourselves and listen to our bodies. My boss has agreed to let me work from home for now...Im hoping he will let me do this throughout treatment as I am in management and can do everything remotely. Only if the client complains I will have to return to the desk, I hope that won't happen. He is aware the effects of chemo can be cummulative and I still have some short term disability time left, worst case, I go back on it for the end of treatment. I just can't imagine traveling my commute every day while doing chemo, way too much
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Wildcolnia, thanks for the salt warning. Glad you are ok.
Quiltingnut, I hope your spirits are rising. I know being creative helps. I need to sew or make jewelry or something to lift my droopy mood.
Becky and May, the stress and toll of chemo is plenty without the added concern of employment woes. I'm working too, and hope all goes well for us in that regard.
I need to exercise more. My body is used to vigorous movement, but not much in the last 2 months since surgery and chemo. Legs pains go away when I go for a walk, but struggling between resting, house chores and working. Gotta get balance because weight gain is really bad for breast cancer prognosis. Gonna try a nap then a walk this eve.
My head is itchy today and when I scratch, strands are coming out. It's day 24 for me. Looks like I'll be pulling out the scarves and hats I bought in preparation.
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Bec-Ky,
I am also eating like mad and everything tastes amazing. I am day 9 after 2nd dose... It's crazy. Keep telling myself to eat better but, I get really hungry lol! I think I may be up a couple of pounds, but, I should be up ten. If I get really hungry I start to feel nauseated, so, not sure how to slow it down. Most of me feels happy that I am able to eat...but,my jeans may start to disagree shortly.
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Tlow- right!?!? I keep saying that too.... That I'll eat better. I think.... if I don't buy it, then it won't be in the house to eat.
WRONG!
Nothing. NOTHING STOPS ME.... 😂
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Hi Steph and all,
I had a buzz cut to zero first. But the stubble drove me crazy for the next three weeks. Sunday night before my third infusion Monday ( yesterday here) I had a friend shave me bald. It feels and looks so much better. Probably should have done this front up but I thought it would all fall out.
Another tip I read here somewhere was not to buzz too short because it is too short to lay over under wigs / hats. So don't go lower than a 3/4 buzz, if you are going to take that step before the shave.
I don't like being bald at all but am slowly adapting (mastectomy to follow chemowill be much more confronting - I imagine). I am also getting use to my wig and my head is less sore so can wear for longer periods of time.
Good luck.
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helenlouise—thanks for the hair tips..they are very timely as I think today is the beginning of the end as far as my hair goes! I’m shedding a ton tonight (round 1,day 15)...2-3x as much as my “normal” shedding. I have extremely thick hair so it’s not noticeable yet, but at this rate I’ll be lucky if I make it to the weekend before needing to shave it. Not to mention I’m already getting tired of picking hairs off the floor, etc. 😩
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I feel so much better 2nd round than the first - not sure if due to being better prepared, better premedication, and knowing what to expect, or if the weird diet I followed helped, or if my body is just adjusting better. Chemo on Wednesday, Thursday OK, tired by Friday afternoon. Didn't do much over the weekend, tired and achy. The body aches and back spasms were maybe 1/2 to a 1/3 what they were the first time - not sure if due to taking loratadine earlier or what. First round, when I had full day at work on Monday, I could hardly walk by the end of the day, and almost crawled to the bathtub. Today I took 1 advil before work, and 1 at noon. I feel fine. Zero aches and pains. I gotta say, I am feeling much more optimistic about the next 4 rounds. I will take this. My mouth is sensitive - toast feels rough and scratchy. My appetite is better, and the Chrissy Teigen banana bread I made doesn't seem to bother my mouth
. I didn't get as bad of night sweats this time, and I didn't break out it horrible chest acne this time either. I did still get my period. 
Did anyone else get stabbing pains in their breasts and ovaries? I am envisioning my ovaries and cancer cells vanishing into puffs of dust. 0
