Starting Chemo in July 2017
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Hi PauletteK - So glad you have something to look forward to! I love taking a walk with our dog and DH. Sometimes in the deep fatigue it is hard to find motivation, but I tell myself I will lessen the SE's if I do, so that gets me out there, even if it just to the end of the block and back.
Enjoy your walk tomorrow!
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Matryoshka: The steroids are amazing aren't they! Haha. Siunds like your SEs have been manageable. I felt flush with the Taxotere also but it subsided. I just thought I was getting hot flashes but my nurse instructed to report every weird, uncommon feeling so I did. She tried to time that particular SE from the time she hooked up the bag!
Mari: thanks for the kind words! Remember I'm only in day 2 of my first cycle. I'm really dreading days 3-5 especially since day 6 is my birthday!! DH has something planned and he's not telling me. I just hope I'm well enough to celebrate... My only fear is going out with my immune system compromised. But I won't know my WBC count until right before cycle 2.
Welcome LoJo100! Looks like we're doin the same chemo regimen. Are you doing 4 cycles or more? I thought about doing the cold capping but it would be too much for my DH to help with. I hope to be getting back to a regular walking regimen soon. Ever since surgery, I've been taking walks here and there and doing my physical therapy but I know I need to get out there more.
I made it a goal to get a walk in this morning before my Neulasta shot. I was thinking that I might have so much joint & bone pain afterwards that I needed to get them moving now. So this morning, I went to my local church. Our Catholic church has a huge shrine with a statue of Mary at the top, and a cement path that goes maybe 50 yards in circumference. there were a few people walking laps around it while praying. I have heard meditation is great for recovery so I decided to try it and managed a 30 minute walk with a few pauses throughout. This was huge for me! I don't know why I never thought of doing this before. Today is day 2 after the 1st cycle so I'll try and get out there again this weekend while the SE are still manageable. Looking forward to your future updates, LoJo!
Paulettek: So glad to hear your infusion went well today and that you were able to get a walk in also! Do you get the Neulasta shot tomorrow? Or do you have the injector to do it yourself? Hope the rest of the weekend has minimal SEs for you!
I was doing fine after Neulasta shot today for a few hours. Right around dinnertime, I started feeling some soreness around my legs and ankles. I don't know if it's from the shot or from my walk this morning. I naturally have weak ankles since I've twisted and sprained them so many times in my younger days, so I'm just trying to be careful when I walk so I don't sprain them.
I hate being in this hypervigilant mode because I'm always wary about every little thing. Like is the tingling in my feet from the chemo or have I just been sitting in the same position for too long? LOL I noticed that I had a slight cough throughout the day. Is that the chemo or my allergies acting up? I guess we'll have to play the watchful waiting game...
Good night, all!
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Matryoshka - I'm so glad to hear your SE are minimal. I forgot that your regimen is flipped with taxol first? You mentioned your WBC, do you take neulasta and is your taxol given every other week or weekly. From all I've read, the fatigue is the real issue, hope you continue to do so well. I know you work and are a caretaker for your father, right? He sounds like a lovely man and a bright spot in your day. Please drop in occasionally, I keep you in my prayers but understands your constraints.
Sunnyjay - you do have the right attitude. You are our "Sunny" one on here.
Mari - I hope you had a better night. I was feeling so nauseous last week, actually since infusion. Loosing weight, just not thriving that the Dr okayed my taking the Ativan and it's worked beautifully. At .5mg I can function without any SEsuch as dizziness or grogginess. The nausea is gone, weight loss reversed and energy level is back. I only take 2 a day, only when I notice a funny tummy coming on. Plus I sleep like a baby. It's a game changer for me. I'm not concerned about addiction as it's such a low dose and only a couple time a day instead of the prescribed 4 times as needed. I think one at bedtime on the nights you need it is a good idea. Too many bad nights in a row has a terrible effect on health and recovery.
Paulette- you sound like you had a great infusion day. Fantastic! Keep it up and keep posting!
Lojo - hello, so glad you chimed in, another early starter already on infusion 2! Woot! What will you schedule be? Every three weeks for how many? Glad fatigue is your worst SE, however that's no small potatoes for sure. Not cold capping myself but so interested in the process. Did you bring the system with you or was your center one of the few with them available? Your hike sounded heavenly, you go girl and keep us up to date, I feel no shame in living vicariously through you
Jen- girl you're worrying me now, this mother hen needs to here from you, you to Enia.
To all the infrequent posters just want you to know I pray and think about you, but I understand you may prefer to fly under the radar. That's ok we're all doing our thing and that's what counts. However I'll keep calling out to you because that's how I do my thing, just letting you know I'm always thinking about you all, and how you're doing on your journey. Never any pressure, just want you to know someone is interested in hearing about your day.
Have to get my prechemo labs this morning. Then acupuncture this afternoon. Want to dust and vacuum the house and fix a nice dinner tonight, maybe make some kind of dessert, we'll see.
Dunkirk was good, but not exactly what I expected. Tom Hardy had a great part, the hero and all. We enjoyed it. Haven't eaten popcorn at a theater in ages, but since I'm supposed to increase my salt intake and I'm still trying to keep my weight from falling, I imbibed on a small bag and it was delicious. Ahhh, the forbidden fruits!!!
Have a nice day everyone with manageable SE and for those with first infusions on the horizon, have a good prep day. Hugs
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hey gals... I cannot believe how "normal" I've felt the past three days!! Went and got my hair buzzed and wig fitted (glad I did... that thing is a pain in the bootie and I can only wear it a few hours at a time).
I go back to work Monday and have mixed feelings... I have a director-level position with a demanding boss. I also have a great team that has kept things running well the past six weeks. I need something to do... but don't want the stress. Ah well. Just hope my suits fit!!
Also had to switch to tea... the coffee was too rough on my stomach. The upside is that I have a new obsession to dive into... temperatures, flavor profiles... areas "Cancer Hates Tea" and I'm all in on having five cups a day!
Oh.... also tried acupuncture for the first time!! Made another appointment and will keep it up through A/C for sure. I'll let you know if it works!!
xoxo
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Pheeeeew!!!!
Finally 6 hours of chemo are done. Got my first dose of pacli and cyclophosphamide. As of now no side effects.
How do you prepare baking powder + salt water mixture to be used for rinsing mouth after meals? I mean any specific quantity?
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theantz- mouth rinse- I was told to add 1 t baking soda and 1 t salt to 8 oz water. I mix it in a solo cup and keep it on the counter and rinse after eating.
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Just want to send a shout out to our Mother Hen, Theresa (Teese), for being such a great and caring mod for this thread!
I'm having a good morning so far: walked to the local farmer's market, relaxed with a bagel while sipping a cafe borgia. Felt a little bone pain throughout the night which prompted to me to get up and move this morning. I still have a bloated feeling and a little constipated so may switch stool softener from Dulcolax to Senokote. One of the nurses described the different strengths.
Oh, and I forgot to mention last night... I got an unexpected care package, sent with loving thoughts from my sister & her family. ❤ I laughed when I saw the Biotene because I had just bought some a couple days ago. I tend to get dry mouth in the middle of the night, even before I was diagnosed so I guess I'll be using this stuff for a good while. Ha!
Ok... Gotta get back home and start day 3 meds. Wishing everyone a wonderful weekend!
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theantz- yes I have baking soda and salt rinse after I ate. It is a pain because I eat small meal so I eat every 3-4 hours. And I hate the smell of that rinse.
JenRuns- good luck to your return to your job. Sometime is good to have side track hopefully it won't be too demanding.
Today is my second day, last night I woke up maybe 4-5 times pee and drink water. This morning I ate a small portion of breakfast just don't have feel like eating. I hope my appetite will be back since I took Decadron and Zofran.
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Sunny - yes, I love it, I have a tendency to mother everything. You ladies included whether you're prepared for it or not.
Mother hen
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Thanks for the nice welcome messages!
sunnyjay - That sounds like a great walk! Some days, I'm happy to make it to the end of the block and back, and others I can climb a mountain. I try and roll with it and get at least a little movement in every day as it definitely helps with the SE's (especially fatigue). Also, I'm doing four rounds in total, so just hit the 50% mark!
Theese - I am renting the caps from Penguin and we put them in a cooler with dry ice. The facility I'm at doesn't have the freezers. It has worked out well, thanks to my DH being so on top of it. He is a good cold capper! We'll see how much shedding I have after this round (#2). No hiking for a week or so, if things go the way they did last time, but will be getting walks in until I feel my energy is back to a place for hiking. I'll take it when I can get it, and will share on this board!
JenRuns - I hope the transition back to the office goes smoothly. I found that once I was back, I was happy to be there, if only for the mental stimulation and some feeling of normalcy. I have amazing colleagues who are so supportive, which also made it easier to return. I'm still on a more limited schedule when I'm having my 'bad days', but I come home, take a nap and then do a little work after th
Also, for mouth issues, I've used the salt/baking soda rinse, Biotene and then rubbing honey on the sore at night and in the morning. The honey was most helpful (and a surprising way to treat it!).
Happy Saturday to everyone! Still on the steroid high today which means the crash will come tomorrow evening and Monday. Sleeping will be on the agenda for
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i use the biotine toothpaste and mouth rinse and have been able to avoid mouth sore although had one before i switched
I did 2 rounds of taxol but when i went for my 3rd infusion, i told murse i had foot pain and nueropathy so taking a week off, amazing how better feet feel but nervous about delaying the transfusions
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question : I have gained six lbs since yesterday, it got to be I'm holding all the water. So it is normal??
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for the mouth rinse, I do 1/4 tsp each of salt and baking soda and 32 oz water. I was gagging on too much salt
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Paulette - are you peeing normally? How do your feet look? Chances are you're retaining some. If concerned call the doc whose on call. Better safe than sorry. They'll most likely say "yes your good", then you can let that worry go
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Paulettek, could be fluid retention but Decadron is supposed to help with that. It could also be from irregular bowel moevements if you're constipated. But yes, I would call the doc to be safe. That doesn't sound normal.
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Jen - so happy to hear your feeling well, I started feeling better also and it's been wonderful to feel normal. Hoping all goes well with work this week. I understand your concern, but I'm hoping the distraction is good for you. I know as a retiree I'd welcome a distraction right about now.
Theantz - yay, the first one is over and done. A huge milestone.
Sunny - what a sweet care package, I'm jealous. You have a good sister for sure.
Lojo - the penguin caps sound so interesting and you'll keep the majority or even more of your hair? In light of min about to fall out in the next two weeks I envy your choice. Please continue to keep up to date. Was it uncomfortably cold, or very doable?
Proudtospin - wow, I'm amazed, I didn't know they would delay unless it was a real issue. However neuropathy is a real problem that can cause terrible long term issues, so happy she is watching out for you. I've just heard of ladies having to put up with worse. I like your groups policy.
Mother Hen
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Teese and Sunnyjay - took your advise called the doc office I drunk too much water he said now I need to cut back to 3 liters a day. I think I drunk about 120 oz yesterday. 😂
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Paulette- so glad you called.
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Been thinking of all you ladies as I read your updates. You are a strong amazing group of women. Chemo starts Tuesday for me. I have spent the past few days trying to keep busy...shopping for my chemo list, doing some cleaning and making a few meals for the upcoming weeks. Distractions are good right now but at times it hits me hard. This morning I went out and ran 6 miles, crying the entire last mile home realizing this would most likely be my last longer run for a while. I had 2 half marathons I was going to run this fall. I guess I wasn't expecting the emotions to hit me this weekend. I have been so focused on just wanting to start so I can get this part over but it's scary. I don't work in the summers, and I always love my summers off. Morning runs, coffee on my deck in the morning and a glass of wine on my deck in the evening with a good book or my hubby, taking our son to the pool in the afternoons, time to run errands and meet friends for coffee or a beer. It just really feels like this is the end of my summer right now. Cancer takes so much from us and it makes me angry. I go back to work the end of Aug and I worry about working while completing those next 5 treatments after I go back.
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Runnermun - I just had my chemo last Friday and I'm doing good. Sure I'm tired but I know we will back to normal as soon as we finished fighting this battle. I believe after what we went through we will be even stronger woman at least mentally. So you only have five treatments weekly or every other week
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Teese / mother hen 😂 I guess I was too aggressively to fight for this red devil drugs so I kept drinking water.
Also I would like to know when do you all have this taste changed? Also I heard we will get more tired on the third and fourth treatments? Am I right?
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Thank you Paulette, we will be stronger because of this. I have 8 total...4 x AC & 4 x Taxol. Every 2 wks. I will have completed 3 treatments by the time I go back to work. I have done my lumpectomy and radiation will follow.
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runnermom - I know that you know we all understand and are putting our arms around you now as you struggle through these feelings. I have no words to make it better, but it does get better and the fears of all these unknowns are resolved.
You will have days where you feel normal, on those days, go and do and have a regular summer day. Next summer though will be all the sweeter because you will appreciate it on a level you never did before.
I've decided this year is just going to stink. It will have good days and I will grab each one and make good use of it. However it's a year I just have to get through. And we will!
God bless you, once the first infusion is over, the fears settle down a whole lot.
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Paulette - I didn't notice that water tasted bad till day 5. Food is still ok at the moment, knock on wood
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Thank you Teese as well. Some amazing ladies on this thread!
Concerning the taste of water...I typically drink a lot of water every day. Gave up pop about 4 or 5 yrs ago. Since I run I like to have something extra to replace electrolytes. Gatorade is too sweet for me so I buy a product called Nuun. It has electrolytes but low sugar and no artificial sweeteners, colors etc. It's a much lighter taste then Gatorade but I love it. Lots of flavors too! There is also some with vitamins or caffeine as well. I plan on using this thru out chemo. Think it will help me drink more water. I order on Amazon but running stores and sporting goods stores carry as well. On Amazon it's a little cheaper and you can buy in a larger quantity. It comes in a tube and you drop a tablet into 16 ounces of water and wait for it to dissolve.
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Hi Teese - The Penguin Caps appear to be working. Have lost quite a bit at the nape of the neck and behind the ears, which is to be expected. Luckily the rest of my hair covers the areas well. I can tell it is much thinner, but others have said they didn't notice, in fact one friend asked if I'd gotten a hair cut!
I will definitely keep you posted. I have threatened to quit a few times (the care and maintenance is a lot, and it makes the infusion day 8 hours instead of 3-4). But, now that I'm 50% through, I'm sticking with it and hoping for the best. I still hike and my head gets hot, but I just put the AC on high when I get back to my car, and will put a bag of frozen peas on my head if I need to.
Last round of steroids for this round have been taken, so expecting the fatigue tomorrow and Monday. Other than that, I'm hopeful this round goes like the last one with SE's being fatigue and taste issues. Went for a walk today, which felt great!
Paulette - Glad you called your Dr. I think I drank a bit too much yesterday too. I gained about 5-6 pounds of water weight, but much of it has already come off because I started peeing every hour or so! (Maybe TMI?)
Glad to have found this group
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Runnermum - so normal to have these waves of emotions. Be encouraged though. I finished chemo back in April - I would have chemo on a Thursday. Thursday thru Sunday I didn't feel great and slept a good bit, but by Sunday evening I would start feeling myself and until next chemo - life was pretty much back to normal. I walked my dog often and was on the run with my 3 children. It all stinks and it is hard to lose those days, but we just tried to pack in the good things in btwn. If you are working ... and have weekends off, you might want to do chemo on Thursdays. That way you can rest over the weekend and then be ready for work on Monday.
Prayers and hugs all around!
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Ladies:
Need suggestion if water beginning taste bad. I like to find anything without any sugar because I watch my sugar intake.
Thank you
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Hi PauletteK - I have found that LaCroix or Spindrift (I buy it at Trader Joe's, and prefer it to LaCroix) are nice to have around. The Raspberry Lime, Grapefruit and Lemon Spindrift are all great. It is sparkling water with real fruit juice, no sugar added.
I drink water with lemon or lime in it during the day, and will usually have a Spindrift in the evening to change things up.
I also find that a nice tea in the afternoon and evening is nice, as well (I like Yogi - Throat Coat, Ginger and Calming).
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Paulette, I also like Lacroix... I've taken to making decaf iced tea too. Teavana makes a yummy ginger lemon... tastes good hot or cold, and helps quell an ueasy stomach at the same time.
Runnermum - don't lose hope. Granted I'm only one treatment in, but I would echo what ML 1209 said - the entire week isn't too lost. I walked even on the rough days, albeit slowly and not far. I have chemo every other Wednesday... by Monday I felt a ton better, and Wednesday I felt "normal" for sure. (That said, I'm still not running, mostly because of the expanders. But I'm walking every day.
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