August 2015 Chemo Group
Comments
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We are a very busy board. I may not post much at least for now, but I am staying caught up on the reading.
Tam-Iam I start chemo on Thurs too. I am starting to feel the anxiety a bit, but I am waiting to take the Ativan until morning of, if not the night before.
Kate I am sure that your MO is checking your levels before infusion. You may still be within normal range and not need it. Don't know since I haven't started yet.
I did get the biotene toothpaste and mouthwash. TONS better than arm & hammer. It also helped that I got a coupon off of the biotene website too. Also if you have a Target near you, they have their version of the mouthwash. It costs a bit more, but it is double the size. Didn't know until after I bought mine at walmart.
Welcome to all the newbies, I am so sorry that you are having to be a part of this club that none of us want to be in, but we are here. I may not post much, but these ladies have been a TREMENDOUS help and lifeline. Not having a family history or anyone close to me having it, I have felt like I am walking through darkness, but this thread has help a lot. I have started my walking again, so that I can keep up with it when chemo starts. I am 6 weeks out post op with some setbacks and my chest isn't doing too bad as long as my body quits putting fluid in my chest area. PS had to drain last week and will more than likely do it again today along with filling the TE. Doing my wall walks, shoulder squeezes and stick exercises help, but I wish things would be better. And now I remember why I don't sit at my desktop computer as much, I forget to stretch my chest every so often.
Well, I better get on with my day and start the process of getting ready to go see the PS. It amazes me how much longer I take to get ready. Of course I get the shower just right and it feels wonderful on my chest.
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"Hope" is the thing with feathers
by Emily Dickinson
"Hope" is the thing with feathers -That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I've heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.
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Thanks for all the ideas everyone. I really like the broth idea never really thought of that but I know I just can't drink anymore water. Now I'm also struggling with constipation yay what fun 5 days and no go now I had to give in and take stool softeners its always something with this darn and cancer thing isn't it?!?!
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cah21: chemo is the gift that keeps on giving.
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Kate,
My MO isn't doing any monitoring between treatments, although I am now here for the second time for IV fluids. She did, however, do Neulasta automatically. Not sure what triggers that protocol.
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Wildflower2: thanks sooooo much for your insight. Going into my 2nd TC infusion now. The claritin switch might be great for me...and glad to think about cumulative fatigue. My last session is right when I have several work events (I'm a party planner) and I need to figure how to manage that (guess my staff will be working overtime
). Did the docs ever give you ideas on how to prevent the fatigue (just exercise maybe?) or is there no way around it?0 -
Kateb579: I literally just asked my doc that 20 minutes ago - and he said it's not necessary unless you call in with a fever - because only at that point are your WBC so low for them to do anything for them.
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Kate,
I had the same question when my onc stopped testing after the first neulasta shot. They told me the first test will show if you have a positive response to the shot (i.e., your marrow should generate new white blood cells) I had a very good response to the first shot so they said I would continue to respond with each shot and new tests were not needed each time. Their big concern is if you do not respond to the first shot, which is why they want blood work done after the first one.
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Sparklypink: my doc said it might take up to 4 weeks post chemo to really notice an improvement in the fatigue. He didn't recommend anything specifically to mitigate it. I have signed up for a strengthening and exercise class called Live Strong to see if I can help myself :-) It's free, tailored specifically for cancer survivors, and offered through my local YMCA. You could check to see if they offer it in your area.
Also, I forgot to mention, I started taking the claritin tabs the day of chemo and continued with one a day for an entire week after each chemo session. That first bout of back pain was a nasty surprise and I was very happy the dissolvable tabs worked so well for me.
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Today is Day 6 of my first AC chemo round. So far the side effects haven't been too bad. I had a headache Saturday and Sunday, but the smoke from wildfires has been so bad here that most of my friends (NOT on chemo) have headaches. Weird taste in my mouth on Sunday, but that cleared up yesterday. Last night was the first time I felt any nausea at all. I woke up around midnight, took a Zofran and went right back to sleep. I feel fine this morning. Last night I did not have a snack before bed, so maybe that made the difference. I've been walking every day and drinking lots of water.
Mom2aBoy -- I am glad to hear you went camping. My next treatment is the Thursday before Labor Day weekend, and we are planning a camping trip then.
KateB79 -- My doctor said they will check my WBC this week (1 week after treatment) but they only do that the first week. After that, it's just the regular blood draw on infusion day. I am getting the Neulasta shot, though.
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Kate, if your WBC is low the day of treatment, your MO may give you Neulasta or start Neupogen the next day, or delay chemo for a few days. Neulasta is administered at least 17 (?) hours after chemo.
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Does anyone here have a port in their arm instead of on the chest? Just found out my cousin had it in her arm for chemo. Sounds better than chest because it would feel more like an IV. ?
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@VickiRides, I got some good advice re: camping on a different forum (July chemo starters - I went over there to see if they had any wisdom for me about going camping again, this time for a workshop, halfway through my 12 week treatment plan). They said to consider the facilities that the camping place has for going to the bathroom and whether they would be sanitary enough for someone with a compromised immune system. That hadn't even occurred to me. Personally I think I can handle it with enough hand sanitizer to sanitize your average zoo, and if I refrain from hugging or shaking hands with anyone, for which purpose it will probably help to have no hair by then, as I will be an obvious chemo case, ha. And maybe skip any showering (guess I'll just have to apologize in advance, to any of my workshop-mates that affects, LOL). The other thing they said to consider was how comfortable it is to sleep on the ground in a tent vs. in a bed, and whether I'd be able to get adequate sleep. But I'll have to see how I feel when I get to that point. It's five weeks away; the workshop starts the evening of my 6th treatment, exactly halfway through. Of course I had no idea when I signed up for it that this would be happening. Hopefully I won't just sleep through the whole thing.
@MsBrompton, thank you for the Dickinson poem.
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@Mom2ABoy - LOL. I am a whimp. I will be "camping" in an RV with my own bed, shower and bathroom. My biggest concern was being a few hours from medical care and out of cell range if I started not feeling well. Good for you for roughing it!! I hope you're up to it for your workshop.
@Artista928 - My port is in my chest, but accessing it wasn't any more painful than an IV. I didn't put enough of the numbing cream on for my first infusion so I could feel the prick and it wasn't bad at all.
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I had the Nuepogen shot. I haven't felt anything, so I hope it's working.
Anyone else just using regular toothpaste right now? Those of you using Biotene, is that because of a specific med in your chemo? A nurse said I shouldn't get mouth sores with TC. Anyone know?
@vickyrides and @mom2aboy: I'm camping right now at the beach! Even though my WBC count was low, the NP said it's not a problem. Shoes on, NO walking in the water.
@Wildflower215: Thanks for sharing about your TC treatments. I've heard about the cumulative effects. My doc said that I won't feel like coming back for #4, but I will because it's the last one. It sounds like that is how you felt, too.
@kateB76: How's the bum? It's not staph, right?
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I found #2 of 4 TC the worst, and it wasn't bad. I used a saltwater rinse several times a day, with Biotene mouthwash and a special fluoride paste from my dentist all the way through, on the principle that it was worth the cost to decrease the risk of mouth sores (pain and trouble eating). No problems with tongue, teeth, or throat. I see my dentist for a follow-up in a couple of weeks.
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If you have thick hair, seriously consider shaving your head. I was stubborn and only got a short cut. Just spent an extra 30 minutes in my shower trying to manage the mess of it just sloughing off. I was getting too hot and lightheaded so I bailed and still have some hair on my head but it looks sickly thin. It's a huge mess! For the record, my hair is stubborn too--I am on day 20 of my first cycle.0
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I do have super thick hair, shoulder length and curly. I have an appointment tomorrow night to have it cut. I don't know about shaving it, but I was thinking about leaving an inch all around. Day 12 today.
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I took only what they gave me as IV and one Odansetron the morning after. I didn't need anything else, and I'm usually the person next to you in a movie theater throwing up from the car chases!
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Wildflower, thanks for sharing your advice on the cumulative nature of the treatments. My medical professionals all said at the outset that the way I felt after treatment 1 was likely how I'd feel after each subsequent treatment, though I'd probably feel more fatigued as the weeks passed. I was feeling confident after my first AC, because all I had was a bit of nausea and fatigue. Now, five days after my second AC, I'm realizing that I'm in for a much longer haul than I'd anticipated! I keep grumbling to my DH, "This is NOT how I felt last time."
I'm having more exhaustion, more achiness, more nausea, and more overall feeling of being *sick*. Kate, I'd think they'd want to run your numbers before your next infusion, but of course IANAD. I have a standing lab order to have my bloodwork done 2 days prior to scheduled infusions. If my numbers are low, my infusion would be delayed. Then again, maybe your counts are assessed right away at that very moment & the staff knows whether or not to proceed.
MsBrompton, I love Emily Dickinson. Thanks for sharing that.
Joceyr, I'm taking what is prescribed to me for anti-nausea for the days following chemo (I believe the meds run for days 2 and 3). After that, I'm taking Compazine only as needed. I have Zofran on hand as well but have never used it outside of days 2 and 3.
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Suzanne50 I'm only on 5 doses of steroid. x2 day before, x2 day of chemo, & x1 day after. I didn't have much sleeplessness the first round, or when I was on it this time, only afterward, this week (today is day 9). & I've never been nervous about the diagnosis or what not. Wondering if it's a delay reaction , or if it has something to do with my usually reversed friend suddenly decided that he's going to throw me some overtly signs of TLC, which totally freaking me out (more than the diagnosis, honestly).
KateB79 Do you need to do blood test before each round of Chemo? I have a routine, all appointments were set up before chemo began):
- Dr office visit (vitals, questions) Before Chemo began
- Morning before Chemo Blood drawn (I call it day 0, since the nurse said chemo day = day 1)
- Chemo day
- Dr office visit end of cycle (for me it's day 19) -- check vitals, side effects, what has been happening since last visit, questions
- Blood drawn day0 (day 21 of cycle 1). The order to the Lab is "stat", which means they spin it right away), and Dr & chemo nurse will see my blood count right away. I think that green-light the chemo next day.
The Neupogen (day 3-7) was a standing order. My Dr ordered it along with the steroid & all the meds when she put the schedule in for Chemo.
Since my Chemo is on Monday, I have to do blood drawn on Sunday morning. I have Kaiser, so I go to the Medical Center where the Lab is open 7 days per week (& they spin it on location). It's also the location where I see the Dr/ get my Chemo. & Hospital is right there. So that's pretty cool not having to run around town...
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Hi everybody! I am late to join as i just found the board but I started chemo in August as well. I did sign up as a member to this site a few months back but was a bit overwhelmed and now I'm back on top of things.
Quick background. I'm 35. Active, healthy, never had any issues. I have two awesome boys, 1 and 4, breastfed them both. I live in Canada.
I'm triple positive. In Feb or March, DH found two lumps in my let breast and when they didn't go away by themselves, I went to visit the dr (in April). He thought they were normal feeling but sent me for an u/s and mammogram just in case. I'm glad he did as the u/s looked funny and they did a biopsy on the spot. (the mammogram did not show anything!!) A week later I was diagnosed with IDC. in June I had lumpectomy surgery with sentinel node biopsy - the surgery and recovery was fine. Had to wait three weeks though for my post op. That was tough. Results were that there were no signs of spreading but due to my triple positiveness and other factor my suggested treatment is 4 rounds of AC, 4 of Taxol/Herceptin, 5 more Herceptin, then radiation and then oral drugs for five years.
No one had mentioned chemo to me (except for one Breast Health Nurse - who said from her experience, people with HER2/my pathology are recommended chemo. I'm glad she did - it prepared me for the oncologist visit).
I had a portacath (PowerPort! i just like to say PowerPort haha) installed on Aug 11 and had my first round of AC on Aug 12th. Port install was...awkward. I wasn't sedated - I actually turned it down - but the pushing and shoving and neck soreness really sucked. My surgical daycare nurse didn't know what the port was and actually tried to shave my groin for prep. I had to say - I don't think that is necessary and she had to check with another nurse...I think she thought I was getting a catheter?? Ugh.
The actual chemo itself was not bad. Two hours and my husband came. I did feel pretty nauseous and didn't really eat much for days, but this time I think I'll know how to take my optional meds better to manage it all. I only puked once, and right when my son got home. So he saw me puke. I had prepped my 4 year old with the facts. Mommy has to take some medicine that will make her feel sick for a few days and the medicine will make my hair fall out. When I ask him what will happen when I take my medicine he says "mom's going to go bald!" and he thinks it's funny.
I did buy a wig - a Jon Renau and it's actually super nice. It looks like my hair and super natural! so that's great. The Cancer Agency had so many older lady styles that just weren't me. I found a salon that sold wigs and got a nice synthetic one. Hopefully it will be ok. My hair hasn't fallen out almost 2 weeks later, but I know it's a matter of time. My long black locks will need to go...but I do intend to cut it and donate it as it's not color treated...
Has anyone cut their hair yet? I need to channel my inner G I Jane and just do it..
I am sort of rambling. I just think it's great that there is a group of August starters here (ad this site in general)
-Michelle
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Hi Michelle! Your experience sounds very much like mine with the port insertion. Finally, 3 weeks after the port surgery, I have no more pain in that area. I can now sleep on my right side without issues--so if anyone is new to the port, trust that it can/will feel healed in short order. I see you're also triple positive; be sure to check out the triple positive thread.
Re: hair, yup, I had mine first cut short last week...and then buzzed...and then shaved, because it all fell out in a couple of days. My scalp right now feels like a greyhound's flank. I have a lovely wig that my stylist trimmed, but I'm saving it for date nights. The rest of the time, I either go out bald or with a soft cap. 0 -
Welcome Michelle888! It's never too late to join this thread. We are having a surprisingly good time discussing all this mess.
Woo hoo for powerports! I like mine, which is weird to me because when I first heard of it I was dead set against the idea of that kind of unnatural interference with my body ... Then I realized that the chemo itself was a huge unnatural interference, and I might as well be as kind to myself with it as possible.
Interesting to hear what everyone's experience is with nausea meds, etc. They're giving me some along with intravenous Benadryl on treatment days, but I also got some to take home. Plus a prescription allergy pill, which doesn't seem to work as well for me as good old Zyrtec. I'm not sure why my MO prescribed it for me, so I'll have to find that out on Friday. And I was advised to get Imodium over the counter, which today saved me from the kind of day I had yesterday.
I've also promised my son some fun times with the baldness. He wants me to use my bald head for my Halloween costume this year. Honestly, I'd be all for just going bald, and I wouldn't be bothering with the chemo diva wig, except that I've got parents with dementia, and it can't imagine having to explain to them not just once but multiple times who I am -- and once they know who I am, why in the world I cut off all my long hair. I'd rather just wear my hair-wig and a hat, and when they quiz me about why I'm wearing a hat indoors, just plead to being cold. (Unfortunately, I'm going to have to start my hat-wearing prior to the wig being finished, since cutting off all my hair will be required for making the darn thing. Maybe I can get away with some kind of similarly-style synthetic wig until my hair-wig is ready. I wonder, if I got a short synthetic wig, if they'd notice that one week my hair was short and the next week it was long? Well, truthfully probably only my mom would notice, my dad has never been much for noticing cosmetic changes!)
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Welcome Michelle! Sorry you have to be hear but glad you found this site for support. It is great to go through similar things with everyone. Makes us all feel united and not so isolated.
I am still "Sleepless in NY". The steroid regime is killing my sleep. I think I may have to ask for something to help that next round. Otherwise I had a great day yesterday - day 1 after Monday's chemo. I was productive and felt relatively "normal". I like normal. I will take it. My stomach mostly bothers me at night so I took a zofran which maybe helped. Not really sure since I still can't sleep.
sloan15 - I do rinse with Biotine and salt/baking soda throughout the day. I didn't get any sores last treatment and so I continue. I rather not risk it. I don't want any more problems that I have to have! I did it for 2 of the 3 weeks in my cycle.
Onwards and upwards my friends! Every day brings us a step closer to a full recovery. My dr. told me that the second I was diagnosed I became a survivor. And that is what we all are ....SURVIVORS!!!
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Hi Everyone! Welcome, Michelle. You've come to a good place.
@sloan15, we'll know today what's up with the bum. It's gotten much better over the past few days, so I'm fairly certain it's not MRSA (my worry), but it could still be staph. If I were a betting woman, I'd say I'll take antibiotics for a round just to be safe. I'm not thrilled about that idea, but it beats some weird and horrible thing developing!
Re: labs (several of you have commented): the way it works for me is that I arrive at the cancer center 30 minutes prior to my appointment with the MO or NP on the day of my infusion. They draw blood, spin it, read the counts, and then I get my infusion. I guess if anything is way off, they either delay treatment (which I so hope they don't do--I really want to be done with this before Thanksgiving!) or prescribe Neupogen, which the NP says is fast-acting. I need to learn to trust these people; this is what they do for a living. And I could invoke my ongoing joke: I'm not THAT kind of doctor.
Hair. I've had short hair for a long time, but I went way out on a limb and got a super-funky haircut the week before chemo. I love it, and I've decided that this is how it will be when it comes back. In the meantime, it's starting to shed. I'm hoping to get in to have it buzzed tomorrow. If not, I'll do it myself. I'm wondering about body hair, too, since TC makes all of it go. Here's to not shaving for a few months! I'll be very happy to keep brows and lashes, but am armed with makeup, should the need arise. I can deal with wearing hats on my stubbly head; eyebrows are a different story.
My best friend made the joke that, since I'm so pale--I mean "fair"--once I lose my hair and brows, I can pretend to be the kid from that 90s movie *Powder*. I laughed out loud.
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Kate, you look great with your short hair, at least what I can see from your avatar!
I've always put far too much money into my hair. I have super frizzy, curly, unmanageable hair (if you're old enough, think of Roseanne Roseannadanna from SNL...that sort of triangle 'fro), and I routinely get Japanese thermal hair straightening done every four months. The process takes four+ hours. Most people can only get hair colored or thermal straightened but not both; however, my hair is so resistant/strong/coarse that my stylist can do both processes--so I also get it colored, since I'm about 90% gray at this point. I always joked that my one luxury item was truly my hair, since I'm completely low-maintenance when it comes to makeup (only for date nights) and clothes (jeans and T-shirts pretty much all the time). Now that I'm bald, I'm at a loss...where do I throw my money and time? Oh, I know...cancer treatments.
I'm not sleeping well lately, but I've been finished with the steroids for a few days. I can't seem to sleep for more than a few hours at a time. I don't feel tired, exactly, but I feel exhausted.
Metal taste in my mouth is more prominent these days, and I am SO sick of the taste of Biotene, but I know I have to keep working to maintain good oral health. I'm walking with a friend today & we're supposed to go to a restaurant. I'm not yet at the nadir, so I'm open to a public place, but I'll be armed with wipes & hand sanitizer. Now I have to find something on the menu that's not going to hurt me...no pink meat, no delicious salads, no sushi, no soft cheeses...all the things I love are off-limits. I can't wait to eat normally again!!
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JenPam, I hear you about eating normally. I made the BIG mistake right after my first round, when I thought I felt okay (it had to have been the dexamethasone messing with my fragile little mind), of eating way too much--and too many--rich food(s). I paid for it dearly. I'll just leave that there.
I'm just to the point now (day 13) where I'm confident enough to eat kind-of-normally, but I call it a lesson learned re: the first 10 days. . . I'm so with you. I can't wait until this is done and I can eat ALL OF THE THINGS.
If this thrush would go away--and this is part of why I'm so hesitant to take antibiotics for the other thing--I'd say I feel pretty darned good right now. I have a week to savor it before the next annihilation of cancer cells comes. Do your thing, TCHP, 'cause I want to get on with my life.
P.S. Roseanne Rosannadanna for the win.
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Thanks for the welcome, everyone. Yah it sucks to have to be here, but might as well be here with awesome ladies!
@JenPam/@Mom2ABoy - yah the port is finally feeling better after a couple weeks. A lot of people said they love them, which I found odd initially, but I think I will learn to love it! All the poking we're going to get in the next while, I'm glad my oncologist suggested I get one. I also tell people I'm part robot now
Hair/Head Covers - I've only done a very cursory search, but has anyone found some decent looking scarves or head covers or scarf tying techniques? That don't look...I dunno. Cancer-esque. Or at least a bit more chic? I'm no fashionista, but some of the stuff out there is not my style...
I think I'll just buzz my hair. Funny b/c my whole family (H, two sons) have buzzed or short hair so I joke that I'm going to get the same haircut as them! Maybe I'll be uncle Fester or Varys from Game of Thrones for Halloween!
Yay for saving money on hair related expenditures! I still catch myself looking at shampoo and stuff then realize I won't need any for quite some time...
Sleeping - A few days past chemo I had problems sleeping (maybe because I was hibernating and my sleep was all messed up) but even prior to chemo, and even now,I'd lie in bed with my mind racing. My oncologist did prescribe me Ativan but I don't really like drugs (where I have the choice)...Does anyone take anything for sleeping?
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Sueprisu: I am going to have my first chemo this Friday. I just had my port put in yesterday. I don't have very good veins so opted for the port instead of having an IV each time. Let me know how your treatment goes as I am going to be doing cytoxan and taxotere as well once every three weeks. Do you have TNBC?
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