August 2015 Chemo Group
Comments
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Chiming in to say that I, like Suzanne, cut back from two steroid pills to one and also have had far worse tummy and digestive problems. I'll go back to two next round.
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Hang in there Musogirl! One day, one hour, one minute at a time if need be. Like you said, this too will pass.
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I was going to ask my doc to cut down on decadron. Carolyn & suzanne: thanks for the input. I think I will stick with regular dose than having tummy / digestive problems.
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Birdy, glad you're back on track, as much as it sucks to be on this particular track.
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Birdysmom _ - glad you're feeling better!
Awww, and so many of you are struggling with SE this round. Darn. Hang in there.
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@Musosgirl, ugh, I feel for you! Your week is sounding a lot like my first week felt. (AKA, pretty dang awful.) Hang in there. I've found that what helps me the most, even though it's difficult, is drinking more water. (And qigong, but that's another thread in a different forum!) Water helps with so many things - constipation, dehydration from diarrhea, dizziness - but it's hard to get myself to drink it. I really have to focus and concentrate on what I want as a result and forget about enjoying the water, that's impossible.
I'm also having a smoothie for breakfast every morning that I am eating anything. Strawberries, blueberries, baby kale, chocolate almond milk, chocolate yogurt, and chocolate why protein = the healthiest milkshake you've ever had. And much better for you than slushies! Good luck, I hope you feel much better very soon.0 -
Hey everyone. Looks like everyone is in the thick of treatment and fighting through.
I do have radiation after chemo - currently 5 weeks (monday to friday) but my oncologist said he's submitting a request to radiate more of me (more that my left boob) so I'm not sure if that involves more time? I hear radiation is nothing compared to chemo. Possible skin irritation but really doesn't feel like much.
I have been awol - just busy. Had two sick toddlers and was trying not to get sick myself. Tough with the little ones coughing and dripping and just wanting to snuggle with mommy. I didn't get sick. Knock on wood. I go in for pre-AC bloodwork tomorrow and if all is a good I'll be going for AC #3 on Wednesday...hope the jabs of Neupogen helped!
I went to a "Look Good, Feel Better" seminar put on by the Canadian Cancer Society last week. It was really nice. Got to meet some other ladies and got a big box of free makeup and skincare (MAC, Clinique, and drugstore brands). They showed us how to apply the makeup (that was a bit weird) but also had a part of the session on head covering options (wigs/scarves etc). Canadian ladies - you should check it out. It's free and really lovely. (Find a seminar here: http://www.lgfb.ca/)
I haven't been wearing my wig at all. I have a beanie/toque I've been sporting and otherwise I'm going out bald. The weather has been warm and then cold - making my wig not very appealing. I get a lot of looks but I've also gotten a lot of compliments. One from my 7 year old neighbour - who has no filter, so I think it's genuine haha.
Hope everyone is hanging in there!
Finally took a pic of myself totally bald...
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Friend news: One of my close friends brought us an apple pie tonight. We had a nice conversation on my doorstep and I found out that she'd found out about my treatment situation from a mutual friend. She's one of the kindest people I know, and I'm sure she decided to bake a pie for us after she heard the news yesterday. Like my other friends, she also offered to drive me the 90 miles for my treatment day, if ever my hubby can't drive me. I feel very blessed by these people in my life. This experience has really made me appreciate my friends!
Hair news: All of a sudden, I look somewhat like a plucked chicken on one side of my head. Not sure when that happened. Also, and bear with me here, my hair "hurts" all the time. Remember when you were a kid and you'd have your hair in a ponytail on one side or something all day, and then you'd change it and it would hurt for a while? That's the feeling. It's bugging me and I guess I just wanted to say something. Anybody? Anybody? (Bueller?)
Funny moment, this afternoon I needed to go out for a bit, and as it was a crisper day and I have so little hair compared to what I'm used to, I put on a hat. The hat was big, soft and deep, actually quite a typical "cancer hat" now that I think about it. Anyway it felt so cozy that I kept it on all the rest of the day, and when my son came home from school and saw the hat on me his first question was, "Um, mom, do you have any hair under that?" So cute. I think he thought it all had fallen out at once and that was why I was wearing the hat! I took it off to show him I still had hair.
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@Michelle you look beautiful! I'm not surprised you're getting compliments. I'm glad you mentioned Look Good Feel Better. Back when I was contemplating all this, before my treatment started, I found out about that program, and I thought hmmph, how shallow do they think we are? But since I don't have all that hair anymore, I've actually been wearing makeup every day, so now I'm thinking, "Hmm, free makeup, cool!" LOL. How our perspectives change.
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Michelle, you look beautiful!
I've had a rough few days--fatigue, that food stuck in the esophagus feeling (I take a generic Protonix [prescribed by the ENT after he scoped me & said nothing serious is going on]), sore throat, runny nose, queasiness, more of the numbing same. I was in bed for nearly 48 hours & only got up to walk a couple of times & try to eat. Otherwise, I lost a good deal of time! I'm done with AC for now (yay) and keep telling myself this will get better as I progress to the next regimen (THP).
I'll be having six weeks of radiation after twelve weeks of THP; if all goes accordingly to plan (!), I should start radiation in January.
Sending positive vibes & lots of hugs to all of you!
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Birdy, so glad you're feeling better!
Vicki, are you feeling any better?musosgirl, I'm so sorry you feel so bad. The good news is that you'll probably feel better in a couple of days. Hang in there.
carolyn, I wondered why my stomach HURT so much after last round--it was that feeling that I used to get as a kid if I was about to barf, though I didn't vomit this time. I bet it's cutting the decadron in half. I'm not sure which is worse for me; I'll talk to my onc on Thursday before infusion. It's definitely a trade-off, isn't it? I think I'd rather have a stomach ache than crushing anxiety and heart palpitations, but we'll have to see what round 3 has in store for me.
JenPam, I took generic Pepcid, alongside some pure aloe vera juice and a good-quality probiotic, twice a day for about ten days after my last infusion, and it really helped with the stomach pain. Congrats on finishing the AC! I hear THP is a bit easier to handle.
michelle, you look wonderful. Love the lipstick, too! I've been thinking about doing the Look Good, Feel Better program but have resisted for some reason. . . . Maybe I'll call today and sign up for the next one. Thanks for the inspiration.
I'm sitting here on a beautiful morning, about to get ready for work (all-day meetings: fun times), and trying very hard not to think about the steroid-chemo-feel-like-crap-week ahead. I'm trying a new approach to the Zofran-induced constipation and planning to eat more fiber and take more magnesium those first few days. As for the gas: has anyone tried digestive enzymes? I'm thinking of giving them a shot.
Since cancer seems to have turned me into an optimist, I'm hopeful that this round will be as manageable as the last two, and that I won't have to miss any teaching days (I'm lucky that I only teach on Mondays and Wednesdays, and I'm less hesitant to miss meetings, which typically fall on the other days). I'm also hoping that my onc will let me start taking Turkey Tail, since the cold/sinus/gross is spreading on campus like wildfire. . . . Fingers crossed that good hand hygiene (and staying as far away as I can from sick people) keeps me healthy.
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Keep the nice stories coming, ladies! Those of us in the pits really need them. I have to go back to the MO today bc I'm not any better after five days of antibiotics. I keep spiking fevers, I'm achy, sore throat, chills, and slight nausea every day. Next treatment is supposed to be Monday, but that may change. The chemo may change. As he said, in 37 years of practice, I'm the worst he's seen. Hahahaha!
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Michelle, I've got one home sick today too, welcome to the first three weeks of school (In Ontario anyway). She's 13 though and she knows she's got to do her best not to infect her Mom, so we have virtual hugs and blow kisses. It really sucks since she's such a cuddle monkey when she's sick. My boy is a cuddle monkey all the time (10 years). They've gotten really good about washing their hands, and there are boxes of tissue all over the house to sneeze and cough into. And you look beautiful!
Bunnybumps, so sorry that you have the honours bestowed upon you by your MO. Tell him I said if your the worst he's seen in 37 years, could he please look a little deeper into his bag of tricks or the best treatment he has used in 37 years ? Best wishes to you for recovery so no delays for the next round.
Kate good on you for going to school and -->
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So many of you are having a tough time. Hang in there and know we are in this together. I feel like wearing a bubble suit when I go out so I don't catch anything. I am really trying to stay healthy.
We have been given plane and concert tickets to see Madonna in Vancouver on Oct 14. She has been on my bucket list to see.....so this means I will be flying on day 13 post treatment #3. The flight is about 2 hours long and direct. I have had minimal side effects from both of my infusions. My second treatment went better than my first, due to dietary changes. I wonder if I am crazy to even consider doing this. Today is day 13 after my second infusion and I feel good except for being tired. I figured I would wear a mask on the flight. Has anyone else flown while on chemo?
Has anyone else had minimal side effects the first 2 rounds and then got hammered the third one? We do have the option of backing out but I am really hoping we can make this work.
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@DeeRatz: what a great opportunity! I asked my MO at my last visit about flying and she said it was fine. She said for my protocol (taxotere, herceptin, perjeta) I don't need to be uber worried about being immune-compromised. My WBC counts are really good. We are toying with a trip to Mexico in early November. I know it's a risk during chemo moreso because I could feel lousy. But if I'm going to have a shortened life (I was diagnosed stage IV), I might as well enjoy it with my husband and kids (and a mojito or three) at our favorite resort. I say you've been through so much and if you feel good, you should go!
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I'm back at work today and feeling better. I hope everyone else is on the mend too. It just sucks to feel bad, doesn't it? My husband and daughter both came home last night saying there are lots of sick people at work/school. I am dousing them in hand sanitizer and refusing to touch their dishes.
DeeRatz: I'll be flying to Hawaii in about 3 weeks! I asked my MO about it at my first appointment since we've had this vacation scheduled for a while. It will fall between my last AC and first Taxol treatment. The doctor said as long as I feel up to it, traveling is fine. I'm thinking of wearing a mask too since it will be day 10 when we fly over. Enjoy the concert!!
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So I have scalp stubble. I'm not sure if I should shave it smooth -won't it stubble again in a week?- or just let the 25% of hair have a head start on the grow out. I have 2 treatments left and 1/8" of hair. What are you guys planning to do? Anyone get advice on this already from someone who has been through the grow out phase?
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Antibiotics don't interfere with chemo.
Love the 'bald pride' pictures!
I went to work today, and am EXHAUSTED (and oops, I vomited in the bathroom!) but hey, I did a full, 8-hour normal day. Will sleep tomorrow.
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I love that some of us are traveling! And whoa--to see MADONNA or go to a RESORT? Yes, please.
My partner somehow exerted Jedi mind powers over one of my favorite bands, and we'll be meeting them (yes, meeting them) before we see them play live on December 8th. This is one of those things that I'd never thought I'd do: be able to look at a group of people and tell them what a huge, fantastic influence they've been on me. I'm telling my onc this week that I will do whatever it takes to be healthy enough to go.
Three cheers for looking forward to something!
FWIW, my NP told me that I shouldn't worry too much about being immunocompromised on TCHP. She said hand hygiene is the biggest factor, so I've turned into that person with the hand sanitizer. . . .
sloan, I have scalp stubble, too. It's finally past the truly stubbly phase--what little is left, anyway. I was just thinking today about shaving it all off again, but I sort of like it; it holds my hats/kerchiefs in place.
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Thanks for all your input.....So I guess I will be rocking out at Madonna. How fitting is the name of her tour, "the Rebel Heart tour". I will feel like a Rebel rocking it out in my wig. Better not rock too hard or my wig may fly off. How funny would that be!!!
I was also wondering about the stubble as well. My hair is also growing back. I have been shaving it about once a week as I can't stand the stubble. It just catches on things. I prefer the smooth head feel. Is it going to keep growing thru my treatments?0 -
Hair is such a funny thing. I never buzzed it, just cut it close with scissors weeks ago. I thought it would all be gone by now, and most is gone, but instead I'm like a little fuzzy duckling.
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For some reason the notion of all of us as little fuzzy ducklings makes me smile.
DeeRatz, I wonder the same thing. I'm half-tempted to just let it do its thing and see what I end up with.
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funny this should come up. For the first time I took the shaver to my head this afternoon. I had these 1/8 inch or 3-4 mm fine white hairs coming up every where. And the coarse dark stubble Isfalling out every where. I still have a nice Velcro effect for my scarves but no more duckling fuzz.
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Well, if we're going with that imagery, I wish I were more duckling and less Velcro! Haha
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I'm really sorry for the side effects many of us are facing. This is a heck of a battle. I'll count myself lucky that apart from debilitating fatigue on days three to five post treatment, and hospitalization once with febrile neutropenia, I've weathered AC not too badly. I finished my last dose dense AC last week, and today being day six, I went out for a little drive to pick up a few things, and mostly just to feel normal. My little trip went well and I was thoroughly enjoying myself until a rock went through the windshield. No matter, it will get replaced, and I've decided I'll deem the incident as a SE of AC.
I start DD Taxol next week, scheduled biweekly for eight weeks. For some reason while on AC I did not lose all my scalp hair, maybe 60%, and I think it is actually growing a little. Anyway, I have enough hair to look okay in a darkish room, and I was hoping to keep what I have. I've read that while on Taxol, other body hair (eyelashes and the like) are lost, but I don't see anything abut scalp hair. Anyone know if scalp hair loss is a SE of Taxol or can point me to reading material?
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Saw my MO today and asked about steroids. So my plan for my final round of chemo is ....day before chemo - 2 steroids, day of chemo -1 steroid (plus what I get in IV at infusion), day after chemo - 2 steroids....then 1 and 1. So hopefully this plan will allow me to sleep AND feel good (or better than last round). I am finally back to feeling good one week after my last chemo.
Haven't had much time to catch up here but sending everyone some feel good vibes....I know some of you are having a tough time.
Miraculously, I have been able to keep up my marathon training. NYC marathon is a little over a month away and I am determined to get there. Just need to get through one more chemo....
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Sio, the taxanes cause widespread hair loss, though not for everyone. Maybe you'll be one of the lucky ones!
Suzanne, that steroid plan sounds like a good one. We still haven't gotten my dosing exactly right, so I'm planning to talk with my onc this week before the infusion about taking the regular dose the day after chemo and then the half dose on Saturday and Sunday. . . . We'll see what she says.
molliefish, do you have any N/A beer reviews for us?
Hang in there, everyone! Again, I'm reminded of what a great space this is for us. So glad to have met all of you, even under these wretched circumstances.
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Hair issues: if your head hurts then the hair in that area is about to fall out. Cutting or shaving the area will help relieve the tenderness. I am still shaving my head periodically. It worries me that it's mostly little white hairs showing up but for now I prefer it to the dark painful stubble.
Travel: Wow! I cannot even think about travel right now. You ladies are awesome for planning stuff like that during treatment. I am hoping my family can take a little trip before surgery and radiation.
So today has been worse...and better. The SE were worse, but mentally I was in a better place. My PTSD was fully engaged the past couple of days--complete with suicidal thoughts. It is my biggest hurdle to completing chemo and my MO knows this, of course he doesn't know about the last two days. I only see him day 1 of each cycle. He isn't in the office when I go in for my H only infusions. I am terrified of my next cycle right now. But! I threw out the slush and forced some water and G2 (Gatorade 2) which was recommended by my nutritionist. And I am crunching on plain ice at the moment. My worst day this cycle should be behind me and I am going to focus on this weekend--my niece and sister-in-law are in town. I am missing most of the family stuff but hoping to see them once or twice before they leave.
One last story: I applied to Cleaning For A Reason and got a placement--it's four free house cleanings over four months for women going through cancer. Of course they could only come today this month... I spent the entire day in bed, not daring to get more than five feet from my bathroom. I am the kind of person who doesn't let my own mother do my laundry for me; so to be stuck in bed (praying I wouldn't need the bathroom till they left) with two ladies cleaning my house and whispering in Spanish around me was very awkward. But for a brief moment in time my bedroom smelled lemon-fresh!
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Hey all --> re N/A Beer... I surely do have a report.
First the Wines- I ordered one Chardonnay and one Cabernet Sauvignon (Ariel)-- the Chard was corky and undrinkable. I've got a store credit for another bottle. the Cabernet was ok at first taste but it's not for me. Too fruity but those who like a less dry, more fruity red will like it. I also ordered a 'Loxton' Cabernet Sauvignon, also not for me, but it makes a great fruit fly trap for the visitors that came in my box of peaches.
Now the box of beer I got contained about 14 different beers some singles and a bunch of pairs.
The one's I've tried so far are:
1) Krombacher Weizen malt beverage- it was really good. Almost like I was drinking a Leff blonde.
2) Sagre Preta - it is a very dark beer, and I think I should have tried it at room temp, or at least not cold but cool. It could be better but it was good.
3) Clausthaler Amber - I liked it, a nice gold colour but it had a kind of bitter after taste. Coming from someone who likes bitter, it was almost too bitter.
4) Schmohz 120 - This is made in Michigan and I really liked it. Nice amber colour, and I can't really compare it to any other beer I've had but it was good. So far it's my favourite.
Tonight my honey tried one of the Krombacher Radler beer and I had a taste of it. It's very much like a craft beer with grapefruit/orangejuice if you've ever tried one, a good summer beer. I suspect it's so close to a 'real' Radler because the Radlers are low on alcohol naturally.
Right now I'm waiting for the massive head on this Erdinger Weissbrau to dissipate... so far so good but I don't want to say too much until I've finished it.
The sample pack (case) of 24 cost me $45 CDN +tax. The company delivers in Canada and are working on deliveries to the US. They limit shipping in the winter time to reduce the chances of freezing, but as I said it is in my hometown, and very near my work place so I picked it up.
So there you have it my dears...... who knew I'd moonlight as an NA beer critic
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Molliefish, thank you! The conversation did run along those lines, but I will say, for an older doctor he's very current on the latest research. He did indeed dig and switched me to Taxotere and Cytoxan, but at a reduced, but still-therapeutic, dose. 2 rounds to start, 3 weeks apart and we'll see how we go. If I do well, we'll add 2 more. When he gave me the good news, he prefaced it with, "We have to change your treatment plan; we're literally killing you at this point." I told him I felt fine until he started to cure me ;-) But DH and I are relieved. Although we're facing another bunch of unknowns, I'm elated not to have to face another round of AC. And we're keeping the extra-special anti-nausea narcotic cocktail for an appetizer and the yummy anti-nausea niblets for dessert. Another relief. It may be overkill, but it works and we're not messing with it. So I get an extra week off because I'm too weak to start Monday, and then we'll start October with a bang. Well, hopefully a very small *dink*!
Sloan15, I shaved those bits again. It got on my nerves that my caps and the pillowcase would stick to me like my head had patches of Velcro!
To anyone considering traveling, I do recommend extra precautions, wipes, anti-bac, your own handsoap, a prescription antibiotic, and a mask. They may not help, but they certainly won't hurt, and the last thing you want is to go all that way and feel lousy because of some other dirty, icky traveler that didn't wash their hands, or cover their mouth or nose. At least you'd know you did your best. If it were me, I think I would also consider a pair of cotton gloves. The thought of door handles, luggage trolleys, anywhere in the security check...yuck. But don't wear your mask or gloves there or you will not be boarding your plane!
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