Starting Chemo in July 2017
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Leatherette you're almost done good. Have a quiet evening and hoping for a good nights sleep.
Kim E - some of us to get the worst from the neulasta, I remember rebamacfan123 was a real epsom salt user and it helped her tremendously. She would make like a plaster with it and coat the most painful areas. Search her posts for how she did it. It made it so she got through all DD AC+T without any breaks. Plus I think at the end she was given better pain management.
Hugs
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dmjmom sounds like a perfect first infusion. Yay
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Hi Emily! I didn't see your post before. Yes, today was my first. Only have 4 to get through, I hope they all go as easily as this one!
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Teese - So glad this time around went so much better! My second round has gone well. I'm on day 5 today and went to work for about 4 hours. Now I'm home and will be taking a nap shortly, and will do my nightly walk (already walked about a mile this morning).
Yesterday (day 4) was the worst, fatigue wise. I was in bed until 1PM, but still managed a 1 mile walk in the afternoon! It seems that day 4 is my big fatigue day.
This time around, I was so amped up on steroids!! Even Ativan wasn't enough to help me sleep. I seem to be coming back to even today, and no nausea, thankfully. So, all-in-all, this round is looking much like round 1 with just a bit more fatigue.
Oh, also, I didn't realize that steroids can affect WBC if a person responds well to them. I guess I'm someone who responds well, because my WBC on infusion day was high (not high enough for concern, but higher than usual). Guess it is okay (even good?) that I didn't get approved by insurance for Neulesta (insurance said my age - 42 - didn't qualify for Neulesta. I almost fought it, but MO said to give it a cycle to see how I do... glad I did!).
Good thoughts to everyone this week! May SE be few and good days be many! :-)
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dmjmom- don't worry too much I didn't have bone pain I stopped my Claritin on the third days and I didn't have any pain. I can't promise this will happen on my second chemo.
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Thanks for that Paulette! KimE's account was worrying me!
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It's so good to see that most of you first infusioners had a positive experience! Teese, so glad round 2 was much better this time. Hope the SEs are minimal as well for all of you!
So it's day 6 for me, and I woke up another year older! I am feeling very blessed today. My bone pain in my legs has minimized some, but feeling some aches in my lower back and hips, so I have to get up & move every so often. I work a desk job so it's easy to get stuck in one position for so long. Because the bone pain is less, I didn't take Claritin and so far so good.
Hubby made plans for tonight, but had to postpone since he ended up in the hospital last night after feeling chest pains. He's ok now, just needs to take it easy at work. So it'll just be cake with my hubby, parents & siblings tonight. I'm so blessed to have family living close by.
I find myself being paranoid about SEs during this first week. I felt a tingling in my scalp and nail beds earlier, my nose is starting to run, and there's some rawness on my tongue... most likely from all the tea and ginger lozenges I've been sucking on. I guess its just a matter of balance, and hope I don't get to be at hypochondriac level. 😜
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leatherette, I've been living life "normally" so far... and my blood work today was fine. I eat out at least once a week... just trying to be more careful - using hand sanitizer after touching the menu, not using table condiments, etc
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KimE - hope you feel better soon. I had my Neulasra and it didn't bother me at all 🙏🙏 I pray that you will feel better soon.
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Happy Birthday Sunnyjay!!
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Hi!! Wanted to pop in and say Hi and thank you for the good wishes!!
Happy Birthday Sunnyjay!!
Yay to djmmom & Leatherette!! 1 down!! Woot woot!!
1st day and everything went well!! 1 down...on the count down now!! Had a wonderful nurse, a visit from a friend and hubby and I spent a lot of time laughing...it is the best medicine!
Feeling good...took a nap when we got home, drinking lots of water and Nuun, had some mineral broth. Did take a compazine about 30 min ago. I feel good, but my tummy was off. Kept hearing the advice of 2 friends and my sweet nurse in my head "don't try to be wonder woman, take the meds and stay on top of the nausea. It's humid here today and our youngest has a late baseball game this evening (one of his last of the season) and I would like to try to make that, so I took one. Will take another before bed. I don't like to take a lot of meds...but what I am fighting now is different so I will take the meds. Just worry about how they affect me. My friend who is currently getting chemo said she tried to tough out the nause her first treatment, thinking it wasn't too bad. Well it wasn't bad at first but got worse and it didn't end well when she finally had to call in. I took her advice and decided NOT to tough it out. My nurse was pleased!! Can't respond to everyone...Need to leave for baseball game! Hugs to all!! We are fighters!!
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Glad all the first days reported went well! I, however, will not be going to a baseball game or anything of the sort. I don't feel terrible, but tired (5 hrs sleep last night, long day), with a kind of "out of body" feeling and some heartburn. Not complaining, though-I feel great about how the day went and will enjoy my steroid high the next two days, then brace for post-steroid reality.
Great to have all the care and support here!
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Morning all,
A little disturbing news to start then moving on. My MO called and wants a bone scan as an enzyme, alkaline phosphotase went up right after surgery and then has just fluctuated up ands down but never back to normal. Ugh. So it's tomorrow morning. Keep me in your prayers.
All is well, on day 3, slightly funny tummy at times but still taking nausea meds on the scheduled time as my last infusion it was bad till day 4. Then I'll see how tomorrow goes. When did you gals start to taper off zophran etc.
No BM problems, appetite good, I didn't have bone pain last time hoping for the same.
I've found this time that when I set my alarm for meds I also eat a few crackers, drink 8oz of water with a Nuun tablet dissolved in it (very nice suggestion, was that runnermom or Mari?) rinse my mouth and use biotene then fall back to sleep. Usually twice a night. I do this because I was cautioned not to load up on fluids but worried about the hemorrhagic bladder so I want to get up at least twice to void so I work it around meds.
Nothing planned for today, I think I'll straighten up my hobby room and organize it for scrap booking. It's a smallish room, but it has a nice size table and shelving. I just rearrange it to suit what I'm working on so the items are accessible. I would like to make the work space convenient so my daughter can work with me as she likes it too. It satisfies my desire to cut and paste using color and stickers.
Hoping all the first time infusers have had restful nights. So many struggle with the steroids those first few nights. Finally on the countdown to the end. Yay!
Jen - you started back to work this week, how's it going. You sound like things felt normal. For me second week after infusion I decided to get out, ate out carefully like you, no touching condiments, plenty off sanitizer, extra wipe of table before we sat down. Went to a couple movies. Now that I'm retired I envy your job. I volunteer with at risk K-2 age elementary school kids. I'll have to miss the first half of the year, I've never caught their germs before but MO said I definitely would. So instead I've decided to take one closet at a time and clean it out. I'll load up my hubby's truck and send it to Goodwill.
Sunnyjay - oh no, how is hubby today? I worry about mine too, he wants to just do everything himself and more. I watch him like a hawk and make him stop doing things. Sigh, don't we love these guys, they so want to help. Happy belated birthday, yum cake! Oh and my nose dripped for about a week after my first infusion, stopped on its own. Hasn't restarted yet. We'll see.
runnermom- yes take your meds, it is very hard to catch up once you get behind the nausea game. How did you make out at the game. I crashed early both infusion nights. But if I had a game for one of my kiddos I'd have done it too.
Leatherette - it is great really to be on the countdown. I find myself saying "after my next infusion then two weeks till the last AC. I can't wait.
LoJo - I wonder if that is why my WBC was so high, I was on neulasta and steroid and it was checked day 5 and came back 24K. Dropped to 13.5 just before this infusion.
Paulette when you say water retention, is that the same as a seroma. My insision healed beautifully I just had to have it aspirated every couple weeks. First time 32cc, then 22 last one 14cc. Last time was just before first infusion. I'd say nothing now.
Dmjmom - sounds like a near perfect infusion day. How did the night go?
EmilyH - how are you doing now that your A week out? You have 2 weeks to next infusion right?
Kim - So sorry for the bone pain, message rebamacfan123 she had the same issue and used epsom salt poultice type things that helped. She posted a lot and is very forthcoming in advice. Don't hesitate.
Ok now for the roundup:
VL22, lovedormywife, you've had first infusions about a week ago how are you?
BUZZBEE, Ping Pong, hopeforthefuture, Sydsym, she, purpleatargazer -Keeping you guys in my prayers, if you're up to it give us an update
Enia - your breaking my heart girl, just a little update. Hoping all is well, we miss you!
Love and hugs to all. Have a manageable SE day!
Mother Hen
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Hello to my fellow July Chemo Warriors
I am on day 10 of my first chemo infusion. The side effects that have been unrelenting for me are constant stomach cramps and diarrhea, which along with a very sore, tender tongue, have made eating very difficult. So far today has been much better on both of those fronts. My biggest challenge today is a very itchy scalp. I feel like some sort of monkey the way I'm constantly scratching my head!
I also suffered a lot of issues with the Neulasta shot (on-body injector version). I experienced pulsating bone and joint pains in random parts of my body for days. I didn't take Claritin before the shot but did start taking it once I started experiencing the pain. It seemed to help a little so I'm hopeful that by starting the Claritin just before my second infusion, I'll suffer much less next time.
Unfortunately, I struggle with significant weight issues and, during my pre-op doctor's appointment prior to my lumpectomy, I was diagnosed with Type 2 diabetes. (I've been pre-diabetic since my mom died seven years ago.) Is anyone else trying to balance regulating their blood sugars with managing the chemo side effects? I'm definitely not finding it very easy to do. I'd be grateful for any tips and tricks that people might have. What makes it particularly hard for me is that protein has been the most unappealing food type for me post-chemo.
Thanks.
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I took senna on my day 4 due to constipation last night I paid the price for that. Tummy acted up last night so I didn't have a good night sleep. Today is going to be a bad day for me.
Teese- my incisions still swollened and my surgeon said it is holding fluid inside. He doesn't want to use needles to take any fluid out because it might cause infection since I'm doing chemo now. So I'm hoping the fluid will be slowly disappeared.
LoungeKat - I can understand when you talked about stomach did you take Imodium? Also I heard ONC has some magic mouth wash it might able to help you. I have been using baking soda and salt it works so far.
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Tesse,
I said a prayer for you. We all need mother hen to be strong.
sisters, chemo is a bleep but we all are going to kick and stomp it.
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hello and welcome, loungekat! No words of wisdom here... I struggle with my weight, was back on the weight watchers and running kick before diagnosis... then *bam*. Struggling just to maintain my weight.
Sitting in the chair for chemo #2... a little stressed out, since I had a reaction to the cytoxan last time (BP soared). They diluted it and slowed it down, so I'm hoping that does the trick. I can feel my BP is a little high, but it's not alarming. For now.
Hoping everyone's doing well... I have started losing my hair (pubes first, gross!) and started my period today (darn it, why wouldn't *that* side effect kick in??). Living the life.
(That's the "ehh, I'm whining... get over it" emoji!!)jen
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Jen - keeping you in my prayers. Silly girl,tell us next time so I can storm heaven with prayers. If feeling up to is report back in.
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Teese, sending good vibes for the alkaline phosphatase test. Mine was a little high during my pre-chemo labs so we'll be watching that as well.
Thanks all for the bday greetings. I had a nice dinner with the family - my brother BBQ'd and Mom made soup for me. I thought my side effects were getting better. But last night, the bone pain started up again. So around 2 am I took Claritin and took my temp. It was 100.4°! I had been instructed to call if it was 100.5. I freaked out and took Tylenol to see if the fever would go down. It did eventually, but the body aches didn't. I was able to get back to sleep but then woke up drenched in sweat. I called the on-call doctor and he said the bone pain may last up to 10 days after Neulasta, and advised me to take Tylenol or Advil. Since he was no help, I decided to wait until my MO's office opened and call again. The nurse was concerned that the pain lasted this long but couldn't offer additional remedies. I told her about the fever and night sweats, and she consulted my MO for further recommendations. If it doesn't subside in the next day or two then he may prescribe stronger pain meds. I guess if they don't need me to come in then it shouldn't be all that bad.
The hot flashes continued all day and fatigue also got the best of me. I tried to get some work done from home but ended up taking a nap.
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I am not going take this for granted, but today has been great. My body likes the steroids. My bowels have been a little rumbly and overactive, but really just cleared some constipation and haven't had me in the bathroom over and over. I gardened and walked a lot today,
Pubes first, eh? Hopefully they go fast and don't itch?
Another good thing-I do not crave my evening glass of wine at all. I thought that may be hard.
And another positive vote for Nuun! Drinking it now. I don't usually drink soda or sports drinks because of the taste/calories, but the Nuun is great.
My docs are not automatically giving me Neulasta, which I thought was a given. Did those getting it have concerns that led to it, or maybe it depends on the chemo you get?
Sunnyjay, sorry about the bone pain. I'm glad you were able to enjoy a nice birthday evening first
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Tesse, so sorry you are need to have another test run. I pray you get good results. Thank you for asking about how my night went. I think I'm in the calm before the storm. I slept very well, despite the steroids. I did wake up every two hours to go to the bathroom and drink more water. Was so thirsty I went through 40 ounces of water during the night. But I fell sound asleep right away each time I got back into bed. My Neulasta pod just finished infusing, that went smoothly. My MO said that we could probably skip the steroids next round and maybe skip the Neulasta as well. I have mixed feeling about that since everything went so smoothly for my first infusion, I'm not sure I want to change anything. But, I will skip the if she thinks it is OK to do so because I'm uncomfortable with what the steroids do to my blood sugar (although I love what they do to my arthritis pain).
SunnyJay, wow, your bone pain, fever, hot flashes and fatigue sound like no fun at all! I'm so sorry! I hope it all passes quickly.
LoungeKat. I am very overweight, have a diabetes diagnosis, and have been on my cardiologist's version of the Ketosis diet (low carb, moderate protein, high fat) with intermittent fasting since February this year. I'm down about 48 pounds and my blood work is much improved all around. I'm determined not to let treatment interrupt my weight loss, so I'm staying on the diet and walking as much as I can manage.
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checking in to update that this treatment went off without a hitch. Feel a bit wiped out, likely the adrenaline and all, so taking it easy tonight. Hoping for a good nights sleep (with the help of ativan!).
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Sunnyjay- I usually wake up alsmot hourly to bathroom and drink water every night should I take my Ativan so I can sleep better??
I hardly did much today slept most of the day have no energy just hope I can rest tonight.
Tess - good luck with your another test. I know this is so stressful.
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teese, I missed your post... thinking of you and sending healthy vibes for that bone scan!
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teese- prayers for your bone scan tomorrow
Also, you asked when we tapper off Zofran. My AC sessions were on Wednesday. After AC1 and feeling queasy on Saturday and Sunday, MO suggested I continue Zofran thru Sunday but that I didn't need to wake up at night to take a dose, just start again in the morning. Worked well for me
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Paulettek, I was told the Ativan counteracts the anxiety effects of Decadron so may help in sleeping, or at least reduce any restlessness. I didn't have any sleep issues until the bone pain started. I'm going to try Tylenol PM tonight so hopefully I can sleep better in spite of the pain.
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Dmjmom, I have been wanting to try the keto diet to help with my personal weight loss also. And I recently found out this diet was recommended by the Truth About Cancer folks. Is there a particular guide that you are following?
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paullettek- I use my ativan for sleep the first four or five dates, on recommendation from the nurse.
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Sunnyjay. My cardiologist's plan is nearly the same as found on dietdoctor.com. I love the recipes. There is a membership, but I haven't joined and have found nearly all the information is available without it. I might join though because I'm grateful for the delicious recipes.
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JenRuns and Sunnyjay - I took my Ativan and I had a good five hours sleep feel so much better today 🙌🙌 I think I shouldn't fight off this wonderful pill for th first few days.
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