Starting Chemo in July 2017
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I haven't been on in a while but wanted to post an update. I had port surgery a week ago today. I opted not to be sedated. It was a non-issue. Like having a cavity filled. Lots of pressure and no pain. I'm still adjusting to having it in but nothing is sharp or painful. Just a bit of an odd sensation.
I had AC #1 on Monday. I was cold-capping, which made for a rough day, but the chemo itself was fine. Tuesday I went to work. Wednesday and Thursday I felt really exhausted and like I had a huge cloud on my head. Today I'm back at work and still feeling "cloudy" but nothing too untoward has happened otherwise. No bone pain (I took claritin) and I've been faithful about my anti-nausea meds and anti-anxiety pills.
I am happy for a week off before I get to go on this ride again.
Hugs to all!
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Hopefor... - See, I told you so.
Teese - This really sucks. How do your doctors plan to proceed treatment now? Will you still get Cytoxan?
JenRuns - Be prepared, but don't expect those side effects from Neulasta. I didn't have them so far after two treatments. Claritin is not a thing here in Germany. Actually, possible SEs were mentioned by the onc but no meds against them.
I was having another uneventful infusion of AC (EC) yesterday. But this time I developed a headache later that day. I'm not sure, if didn't drink enough or just the new patient next to me, who was talking to me about CANCER for 5 hours straight w/o any interruptions, was responsible.
She wasn't talking out of fear, but since it's her second diagnosis after 9 years, she considers herself an expert now, and just can't stop telling people what to do and how to handle their disease. Other patients had warned me before, but I didn't expect her to be THAT obnoxious. BTW, would be great, if those who haven't, put their treatment in the signature. Otherwise it's really difficult to comment on it.
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Hello, I'm home, YAY,
Apparently I have too little salt in my diet and too much water, plus cytoxan which messes with Sodium a bit. Now the advice is less water, more Gatorade the day before and day of. Also more salt. During the whole thing the hospital I used was the one here at home, so my MO, who is out of town wasn't involved.
I feel 100% better now that I'm home.
I'm also not taking Claritin and have had no pain, my white count was checked today and it was 28K. So the neulasta worked.
I was very nauseous and on IV Ativan from Tuesday in the wee hours till Thursday am. Slept through it all for the most part. Aparently low sodiums make you sick as a dog. I was.
Now all is well, haven't had anything for nausea since 11:30 am today, hoping it's done for the most part. Dry mouth sucks, think I feel a few little irritations around my lips. I didn't start rinsing with salt and baking soda till yesterday as I was zonked out. Also didn't eat a thing all day Tues or Weds. So started real slow with clear liquids then soft solids. Finally had a few bits of food late last night.
Just eating very small amounts frequently. Is that what you guys are doing? Just can't get very much down at once. Hubby is making a 4 oz chicken breast on the George Forman so I can get some protein in.
Theresa
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Gardenhatgirl - we are doing the same regimen. I had my port placed two weeks ago and it's fine now, doesn't bother me at all
I had a little hiccup and just got home from the hospital. I was on the oncology floor and they accessed the port for all my IV's, meds and blood draws, a real lifesaver.
First chemo is done, and mentally it was hard, but otherwise it was nothing. I hope I'm calmer this next one.
Proudtospin - good news, just what I needed to hear, thank you for posting.
Matryoshka - sending hugs and wishes for manageable SE
Mari - sounds like everyone has an easier 2nd than 1st, thank goodness. Wishing for you too!
Jen - how are you doing dearie? I had indigestion till yesterday and they pushed IV Pepcid which worked wonders. Today not so much indigestion. Also no BM from Monday till finally today, although I had eaten very little. Glad to have infusionone done, I felt the waiting was awful, awful awful! Hugs
Theresa
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enia - you are my inspiration as you power through this!
It's so wonderful to hear the positive reports, keep them coming.
Theres
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glad you're home teese....
I'm feeling like crap
tired and nauseated. I did get out for two walks (am and pm) but am counting the minutes until I can legit go to bed. (Well, really just looking to see when I can take an Ativan. I haven't slept well the last two nights and really need it tonight!)0 -
Smiling as I type, I hung in till just now and did my get to bed stuff and the Ativan. Hallelujah it's time for bed.
Day 6 tomorrow for me and 4 for you. Praying for a good night for us all and better day tomorrow, even just a little bit will be appreciated.
So proud of you for getting out for those walks. I walked the halls at the hospital the last two days and not nearly as often as I should of. But tomorrow is another day.
Goodnight
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Teese - LOL. I am not powering through this, I've been just extremely lucky so far.
As a matter of fact, I kind of felt relieved when I finally could easily pull out some hair yesterday on day 16 after first AC-Infusion. I started to fear that I am chemo-resistant. Most of the "missing" SE in my case I credit the good accompanying meds for. I get "Akynzeo"(anti-nausea, that lasts about 72 hours) and Dexamethasone about 1 hour before infusions. Then lots of NACL with the infusions; a bladder protection 2 and 4 hours after infusions at home, Dexamethasone pills on the 2 following days, and Neulasta the day after. We don't have that automatic Neulasta shots here, so I have to inject it myself which is always quite exciting since I suffer from essential tremors in my hands. It's not that bad in general, but affects fine motor skills and especially movements towards targeted spots. Yeah, that is pretty much the exact way one applies shots...LOL. Anyhow, I think those meds work extremely well for me - so I feel blessed so far.
For you, the Neulasta seems to work extremely well. 28k is A LOT! I've been tested at 11.8k yesterday and kept the record in our small group. So yours is really MEGA. Odd thing: Of course I never heard of Neulasta before my diagnosis. NOW I see Neulasta commercials all the time on MSNBC. I watch a lot of CNN and MSNBC here in Germany. You guys live in such exciting, well... bizarre, well... odd, well... maniac times right now.
As for your question concerning eating. Yes, I eat small amounts over the day. Lots of salt crackers of different brands, soups (the ones you only have to pour boiling water on top) which help to get enough fluid into the body without having to actually DRINK all the time, and a banana, wine grapes or carrots in between. I think I mentioned it before, I have meals on wheels delivered 3 times a week. Initially only ordered while planning for the worst, I keep it up now. It's just sooo convenient and not expensive at all. I am variable on two days, but order always for chemo-day. I get home from Cancer-Center at about 2pm, after 6.5 hours. And it's awesome to find a hot, balanced meal awaiting you that you can eat right away whenever you start feeling hungry. But you have a caring hubby cooking for you which still is the way better option.
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ahhhh, sleep is a good thing. Crashed around 9:30 and woke up at midnight to take an Ativan (no alarm, just woke). Slept solid until 8 am and that was awesome. Compazine (ust in case) and a Claritin and we're good to go, I hope
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enia - thanks for the update on how you're eating and drinking. I have some soup in the freezer I need to get out. Ate a couple pieces of toast this morning with Gatorade as I'm not to have too much water. That's not a problem as I've gone off the taste of it now.
My hubby loves all the news channels and I used to too. It's a circus for sure!
I'm glad your meds are good for you. The neulasta shot sounds interesting, adds a little excitement to your day. Haha, I'm sorry, don't take offense I have a dark sense of humor at times.
I get what you meant about the hair coming out and your relief. I had been totally ready for the neulasta pain and when it didn't happen at all, I thought it didn't work, what gives. So I had them draw a blood count just to see when they did my last labs and it was a relief to see that it did. I'm real curious to see what my MO thinks of it. I'm wondering if I need it.
Jen - so glad you had a good night, I know you'll have a better day.
KimE, purplestargazer, she, janeway, Mari, Matryoska, BUZZBEE, Pingpong, and hope for the future, thank you posting and if you haven't lately we miss you and want to hear how you are doing so far.
Sunnyjay, leatherette, dmjmom, theantz, - same, your infusions are coming up, how's the prep going?
Going to go try the dreadmill downstairs, ugh, I used to love that thing.
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@Tesse - preparations - all nervous wrecked.
Did a round of complete blood work today - all normal values thankfully, Interestingly thyroid is back normal too ( compared to 1 month back ) without any medicines. Managed to increase HB level from 11 a month back to 12.5 ( daily beetroots probably helped).
Also underwent Echo - for now, no heart abnormality. Even the radiologist was saying that chemo meds can affect heart, so get it checked regularly. I am not sure, but he did said that heart toxicity is more in docetaxel as compared to paclitaxel - though both are taxanes. Whatever the reasoning, we are still going to get infused with crap !
Thinking of carrying along the following - songs, bottle filled with ice chips(i'll try arranging this in hospital, as initial 6 hours will be gone in port infusion and wearing off of GA ), electrolyte drink to keep sodium/potassium/minerals up, lots of water etc. What is troubling me is whether I will be able to drink after 4/5 hours of GA/Port Infusion.
Finally, If I don't feel right, I'll postpone my chemo by a week, and let my port settle in. I hope delaying it by week would not be an issue. Surgery was done on 5th June.
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theantz - I know, and I'm so sorry for the anxiety, the dread was like nothing I had ever experienced before. The good news is it's only for the first infusion really, even though mine didn't go as planned, I do know what to expect pretty much. The unknown is the awful part.
You sound ready and have a good plan in place. Hugs
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Hi Tesse! I think I am going to be be able to have chemo! I didn't heal when expected, but after seeing ALL THE DOCTORS this week, it looks like my body has decided to go ahead and cooperate. I can see the wounds getting smaller from day to day now. Very exciting! I'm scheduled to start chemo on July 25, two months after my surgery, assuming the healing continues (no reason it wouldn't). If I start complaining of SE during treatment, feel free to remind me how excited I currently am about getting the ok for treatment, lol.
I hope you all have a restful weekend.
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Hey Tesse: I haven't chimed in on the exercise for awhile. But keep at it. I do find it helps with the side effects. I'm on day 8 of my second Chemo and so far no side effects other than this horrible taste in my mouth and feeling more tired than last time. I do find even on days when I'm exhausted that going down to the treadmill for even 10 to 15 minutes makes a huge difference in how I feel afterwards. Go at it slow. Even try a couple of shorter walks throughout the day.
Hope you're feeling better soon.
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dmjmom- yay, healing, what a relief. This cancer is the weirdest thing. A month before I knew I had this everything worked fine. Since the diagnosis, it's like ya never know if it's going to cooperate or not. If you can see a difference from day to day, in 10 days it's going to be vastly improved. Then you can hop onboard with us.
Speaking of taking a trip, anyone making any plans for when this is behind us. I'm planning a trip to Sanibel island on the Florida Gulf coast. I've decided to go January '19. I'll be almost back to normal after radiation and another mastectomy. I love shelling and winter is the best time to find a bunch.
Pink- thank you for your encouragement, after I read it I went down and walked for another 15 min. I will keep at it as I'm desperate not to allow my body to fall apart, but it's so much easier to do with encouragement. Thank you.
Theresa
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Hi all,
Thanks, Teese, for encouraging a check in. I've been a little grumpy so I've just been in lurk mode.
In terms of prep, I have:
gel booties in the freezer, purell, wig, 3 new hats, collected my scarves that could be headwraps together, signed up for a feel better, look better workshop so I can do brows when needed, ordered a set of clippers so I can be shaved and give my husband regular buzzcuts, getting in the habit of drinking lots of water, ordered bamboo wig caps so I don't get itchy, biotene toothpaste and mouthwash,tapered my wine drinking, and am getting together with friends a lot, who are great and inviting my family for dinner
My port has been in since last Friday, and the bruising is down. It was kinda scary looking, especially the incision in my neck. The larger incision is healing. It definitely feels weird to have a solid object implanted in me, but it doesn't hurt. I had my echocardiogram, but no results yet.
I think I am losing weight, aside from the nearly two pounds my mastectomy took out of me. Food is not that exciting to me right now, and I haven't even started infusions. I need to think hard about making sure I eat enough when the time comes. I had depression/anxiety disorder before this whole cancer thing, and it was in remission, but seems to be coming back. I take ativan, rarely, as needed for panic/trouble sleeping, and I don't think it affects me as well as it seems to be affecting some of you. I don't have a bad effect, but it doesn't seem that powerful to me, but I have not asked for/tried anything stronger because I was afraid of dependency or doctors thinking I was a drug-grubber. Is there a standard dose you take?
Thanks, and I will be re-reading everyone's posts so I can be sure I'm not forgetting things.
L
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teese, I'm counting the days until our vacation to Punta Cana in February (204 days). We booked an adults-only, all-inclusive vacation with four other couples and I'll be darned if I miss it!!!
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Leatherette- thank you for posting, we are so much stronger when we share our story. You have done a lot of prep, yay.
My port has only just recently stopped feeling creepy, it is a weird thing to have implanted. The nurse in recovery after it was implanted said "now that you have it, keep it for as long as you can. You can keep it for years". I looked at her and thought there is no way on This good earth I would keep this one second longer than I need to.
I have never been a comfort eater, wish I was now though. I'm having trouble eating just because I'm unhappy, let alone feeling crummy. So I understand your weight loss, and it would be good for you if you can try to find some nutritious things that appeal to you.
My Ativan is 5mg and it helps the nausea better than zophran, which gives me a headache to boot. Don't worry about your doctor thinking your trying for more or stronger drugs. They've dealt with ladies in the same situation as you and know what you need. They're not here to judge you, no one will. You have to be upfront with what's going on so you get the care you need. Hugs
Jen - Punta Cana sounds heavenly. Keep on working on those vacation planst
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Teese,
Ativan did wonders for me. Especially it replaced any nausea medicine at home. All nausea meds have SEs. Post chemo, I am only taking .25 mg at night.
Ladies, I know chemo sucks royally. Be kind to yourself. Do anything possible. I spent a small fortune getting all kinds of gadgets from Amazon. I also spent more than$500 on Epsom Salt. I don't regret a bit. There is a light at the end of chemo.
Mimi
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Mimi - you are such a spitfire and I just love running across one of your posts. I've been following April, May and June chemo threads so I see you pop up a bit. Your advice is so spot on, and I love how down to earth you are and willing to share any detail that might help another one of us ladies out. I wish you lived next door as your wit just kills me sometimes.
Yes I discovered today that Ativan works way better than zophran and it doesn't knock me out. The IV stuff in the hospital they were giving me nearly put me in a coma though. So I'll stick with this.
You're starting rads soon, I know you'll keep us posted.
You always say your husband is a saint, but he is so lucky to have you!
So what was your favorite buy off Amazon?
Theresa
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teese- happy to see you doing well. I thought zofram was ok and definitely better than compazine! But Ativan is suppose to helpe with nausea. It puts me to sleep. I had the acumpulture lady put some magnets on my wrists. Puts pressure there and also some magnets on my ear for anxiety. I could not handle more needles but the magnets were Stick ons! I was thinking of your Gatorade, check coconut water, not sure about sodium %, but it taste better!
Leatherette- enjoy the loosing weight! I am gaining like a rocket! Stress, dexamethazone, staying more at home ; I have many excuses. But I am not going to worry about it now! As for dosages of Ativan=lorazepam mine is .25; for nausea and anxiety, it puts me to sleep
I also think that the dexamerhaxone is a huge part of the anxiety. I believe we all take large dosages for 3 days and just drop it to zero. I was tearing on commercials. I also think ( at least, for me) that knowing that part of the feeling are medication induced help me fight it! And it gets better afterwards!
I am not an exercise person but pushing myself to walk did help, just the thought that I was moving the medication and it would go out of my body!
We are all fighters!
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I will start my chemo on Friday the 21th I haven't done much I'm just scared to start this treatment. I just hope following the doctor instructions will help me on all these side effects I read about.
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hey Paulette, and welcome. Take a look through this board and the months before us, and you'll find a lot of suggestions for managing the anxiety and the side effects.
I'm only 1 treatment down, but can say that it's all manageable. Not fun, and not what I'd rather be doing (I'd rather be at the cottage with my family and friends this weekend, tbh) but manageable.
If you add your treatment plan to be public in your signature, there are ladies here who may be able to give you some insight.
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Jen- thank you so much I'm learning how to use this chat for communication and support.
I'm starting to drink more water to prepare my body for this battle.
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DodgersGirl
Thank you for sharing all these useful information.
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paulettek- best of luck to you. Hope your SE are minimal.
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Paulette - you've come to the right place for sure. I personally don't know what I'd have done without all this support.
Been doing some daydreaming and can't wait to be here in 18 months.
Hope the link works
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Hi Ladies,
I have couple questions to prepare my first chemo. Tooth brush Can I still use my electric tooth brush? Also can I still use dental floss?
About feet I saw everyone talked about epsom salt on your feet, why are we doing this?
Sorry I haven't have a clue what's going on with my chemo. Will start this Friday 21st. I am so nervous about this treatment.
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Paulette - I found the links on this page very helpful, tips, shopping list, advice. Try starting here.
https://community.breastcancer.org/forum/69/topics...
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Paulette, I'm still flossing, and switched to a soft tooth brush. I think it's to help with the potential of sores. I was doing the salt/baking soda/water rinse 4x a day until the nausea kicked in, then had to eliminate the salt (made me want to barf!).
I don't know about the Epsom salts... will have to look at it
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