Starting Chemo June 2017
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Glad to hear some gals have had some relief from the side effects and got out into some fresh air. Today was beautiful in my little corner of the world and after dropping off my furry friend at his home, I enjoyed the low humidity and sunshine doing a little weeding and washing the car.
I also did some shopping. I scored a handful of scarves on sale at Ann Taylor LOFT. They were marked down a bunch and then 50% off that. After they serve their time on my head, they will easily fit in the wardrobe to serve as...well, scarves, I guess. Today I wore my pink scarf.
Before all this, I would normally steer clear of pinks and corals as they could make my strawberry blonde hair look orange. Not a concern now. Ironic.
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Thanks Hhuey that's probably enough information. I'll just have my husband get it for me if I get too bad. I have the 600 mg CBD without THC so that's will be my first go to. I've also ordered the cold therapy socks and mittens on Amazon to help with neuropathy that has been reported as a side effect. Has anyone had any luck with those?
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peachyjeanne... I love your pink scarf and the way you tied it up is beautiful! You really wear them so well. Glad you ventured out today it was also beautiful here and I enjoyed a nice walk along the stream. I hope everyone has a blessed and better than tolerable week :-
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HapB..I spent some time at "YouTube University" to find help with the scarves. These two were easy to follow and modify once getting the general style down.
https://www.youtube.com/watch?v=OoEwu0ETZCc0 -
Thanks for the videos Peachy. You are rocking the scarf!
I find myself throwing on a runner's cap more often than a headwrap because I'm usually just wearing a t-shirt and shorts. I think I'll move to scarves more in the fall. My poor wig is so lonely, it seems so hot and bulky.
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One week post AC#3 over here. The fatigue was actually better this time, though the mouth sores and nausea were worse. Guess you never know what you're going to get. I was hoping to get through with my baking soda saltwater rinse, but over the weekend had to call in to request the "Magic Mouthwash". It's a fairly vile mixture, but it does work. I am struggling with getting enough fluids every day - the thought of most liquids makes me feel queasy. One thing that does taste good is cranberry juice - I got the Ocean Spray Diet Cranberry and it is delicious. Of course then I feel guilty that I'm drinking a bunch of chemicals and maybe I should drink the regular juice.....but all that sugar can't be good for me either, right? It's better than no fluids I guess? Not sure what the lesser of the evils is.
I have to say I quite like my wig - it is very "breathable". I can feel the breeze through to my scalp! I don't wear it at home, though - it does start to feel a little tight after several hours. I will also say I was very fortunate that insurance covered the cost for me ($350). I don't think I would have spent that much out of pocket.
Stay strong ladies!! Thank you for all your posts/shares/commiserations as we go through this together!
Wig pic:
<Pic Poof>
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Your will looks great Curly N!
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curly N wow! Looks so natural. You look awesome for Chemo #3.
Hap you always have such good advice. Keep it coming.
Take care of yourselves.
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Looking good, Curly, hang in there!
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looks great CurlyN!! I'm currently cursing my wig...it poofed way out today and looks funny. I'm thinking I may just go to work in a scarf one of these days.
I've been splashing flavor in my water. Sometimes a little ginger ale (watch out for the sugar. I was shocked when I found a 20 oz bottle had 56g of sugar. No wonder it tastes good.) sometimes a splash of Arnold Palmer tea/lemonade. I used to drink plain water all the time, now I have to force it.
AC#4 coming up on Thursday. Looking forward to saying good riddence to the red devil.
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Y'all are too kind. It's mostly smoke and mirrors - I've been using all my time saved in the mornings not fixing hair to try out all my makeup tools and tricks!!
That's a good idea about splashing the juice in plain or sparkling water to make it more palatable, with overdosing on sugar. I will give that a try... Anything to mix it up!
PeachyJeanne congrats on almost being done with AC!!!
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Curly - You look fabulous! Another thing to try for fluids is the citrus La Croix waters. I found that the lemon or orange tasted good and actually refreshing. I forced plain water during AC. It tastes fine with Taxol and actually I'm thirsty all the time. But I drank La Croix at night as a "treat." I guess it was just to mix it up at dinner time instead of the glass of wine I really wanted
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Hi Wendeez414, would happen to know what your diagnosis code and CPT code was from the oncologist's prescription order for the dignicap? Also, did you get prior authorization from United Healthcare? Lastly, did you have to file the claim yourself or did your hospital/dignitana file it for you? Sorry so many questions about insurance, but I would really appreciate any input
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Peachy - you look fabulous in that scarf - very talented how you tied it!
CurlyN - you look beautiful.
Going in for Round 3 of TCH this morning. This will be my 50% point. I am praying it goes pretty much like the first two.
Wishing you all prays and healing.
Sue
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Glad to catch up with all the posts. After I finished AC last Friday, I felt fine on Saturday. Then Sunday I hit the couch essentially ALL day. The fatigue factor has overwhelmed me this time, but at least AC is behind me. I went in for fluids yesterday, had a low-grade fever, but all was fine by the afternoon. The darn alcohol swab has created two days of unbearble overproduction of saliva and salty mouth. So, it is not the chemo that creates that sensation, it is just them accessing my port. What on earth can I do?! It is some better today, but I can't bear the thought of 12 more swabs before my Taxol. I just have an immediate flush of alcohol taste in my mouth which is so sickening. It is truly a wonder I have not vomited.
My medical team assures me Taxol is easier, though, reading through some posts, I am not sure.
They say my stamina should return after about the 3rd round of Taxol. Maybe I have tried to do too much. I had a friend in from out of town last Thursday who left yesterday. We didn't get a lot of quality time together, since I felt so blah. Peachy, Your scarf looks great. I have still not worn my wig. I was told you do need to shampoo them after so many wears. I was given a special wig shampoo. Maybe yours is ready for a shampoo and it will do better? Just a thought.
Curly, Just beautiful. You look great!
Pink, You look great. Thumbs way up!
To concur with the others, I feel like I have aged quite a bit, and I am definitely more discouraged than when all this began. I was put on Effexor last week, because I broke down crying in front of my oncologist. The hot flashes have become unbearable. I call it my head-on collision into menopause.
Thank you for letting me vent. I am sure in a few days things will improve. They have to, right?
Stay encouraged. We are getting things behind us. We started in June, and it's already August!!
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Kim, I too had a meltdown with my oncologist this week. My last DD AC has left me overly fatigued and very discouraged. I am suppose to begin Taxol next Thursday but may postpone it by one week. My body is worn out, and I really need to regain some strength. Several of the nurses have said that I may be surprised by how much better I do with Taxol. I hope they are correct. One step at a time...
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I too lost it with my MO last week. The emotional toll during my cycles 6 and 7 of weekly Taxol took me to a low funk and I was having trouble digging out of it. I think the just over midway stage can be tough for us because it feels like we should be celebrating, but it also seems like I drag myself into the ring for beating every Monday. My MO also attributed it to the chemo kicking my body into early menopause. She also prescribed a low-dose antidepressant which I started last week. It is supposed to take a couple weeks to kick in, but I already feel better knowing that we are addressing it; or maybe it's a placebo effect. Either way I'm glad to not be crying everyday and feeling so blue. Hang in there everyone!
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I too have been feeling a bit blue. I've got the "why me'" thing going big time. Feeling sad and sorry for myself. I see all these families and their happy summer photos and my poor kids have been sitting around a lot this summer because I cannot tolerate the heat most days. Don't get me wrong, we have done some fun things but it's just hard. Anyway my husband tries to remind me this is just one summer so I can spend many more summers to come. Also everyone is always telling me how well I'm doing and how great my attitude is but holy moly this is hard. Thank god for my husband to let me vent, cry, laugh or whatever I need to do to get through. On to my 2nd taxol in the morning...ood luck to everyone having treatment tomorrow
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I too have been feeling a bit blue. I've got the "why me'" thing going big time. Feeling sad and sorry for myself. I see all these families and their happy summer photos and my poor kids have been sitting around a lot this summer because I cannot tolerate the heat most days. Don't get me wrong, we have done some fun things but it's just hard. Anyway my husband tries to remind me this is just one summer so I can spend many more summers to come. Also everyone is always telling me how well I'm doing and how great my attitude is but holy moly this is hard. Thank god for my husband to let me vent, cry, laugh or whatever I need to do to get through. On to my 2nd taxol in the morning...ood luck to everyone having treatment tomorrow
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Hhuey, I hear you about the mom guilt. We snuck in one fun trip in late May before chemo. But otherwise I have been tethered to town for weekly treatment. Normally we would be up in the mtns camping and hiking and biking. *Sigh*
I did plan a mellow family trip in September which we are all looking forward to. In helps to have something to anticipate.
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hi,
I am from the "starting chemo in Oct '16 board. I have just finished radiation, which was the last step for me (aside from Herceptin once every three weeks through February, '18). It's been 11 months from the time of my first questionable mammogram until now. I was HER 2+. Thus s what has happened:
Chemo (THP) from Mid October till beginning of January. Had lots of side effects, the worst being skin issues
Chemo (A/C) from end of Jan to end of feb (harder than THP)
Surgery- lumpectomy and axillary mid April- only 2% if the tumor was left - it was removed and margins found to be clear
Radiation- 33 sessions, June through last Friday (end of July)
I also had 4 biopsies done, and 6 mammos in the past year
What I've learned in a nutshell:
1) everyone's' experiences and s/e's are different
2) yes, treatment will take about a year, unfortunately
3)you can get through this. Some days will be awful, but some days won't. I made lists of a couple of small things I wanted to accomplish. Some days I did them, some I didn't. But it gave me goals to look to.
4) lean on people. If not now, when? They want to help. Let them.
5) question all medical people as much as you need to
6) be appreciative of every medical caregiver who show you TLC. And there will be many
7) write stuff down. In the beginning, I made a chart of side effects. It was an excellent way to compare those first 12 weeks of chemo. I brought it in to my oncologist, who rolled her eyes a bit. But it was super helpful to me to tell if things had gotten better or worse
8) I used OPI "Nail Envy" on my fingernails. They stayed lovely, if I do say so myself. I didn't use it on my toenails. 9 out of 10 of my toe nails fell off. I'm still growing them back. A coincidence? I think not!
9) I ended up liking caps more than my wig. I ditched the wig after about six months, and even before that didn't wear it often. I had lots and lots of nice hats and caps to wear. That was my splurge. My hair is now less than 2" long (last chemo was end of Feb) and looks cuter than I could ever have anticipated. I took Biotin (Trader Joe's ) every day and still do.
10) one of the worst things was losing my eyelashes and eyebrows. My lashes started growing back in April. They aren't as thick as before, but ok. Brows started growing back in May, very sparsely and slowly. I use powder on them everyday. It has been comical some days, creating brows with no guidelines to follow. Try to practice a lot before all of yours go. My right one always was easy to do. The left one, ha!
I still have neuropathy in my feet, but mostly noticeable in bed at night and not horrible. I have numbness in under arm area where axilary node removed. Not horrible. I have tiredness from radiation. I can deal with it.
I am lucky to have had an extremely wonderful support team - family, friends, medical - and am proof that you, too, will come up on the other side. Any questions you may have, ask me. I would love to try tohelp anyone who needs it.
Love to all
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Wow I thought it was just me feeling sorry and exhausted but I see I'm not alone. Some days I can barely drag myself out of bed. I had such great plans for this summer but everything got put on hold. Now I see that summer here is almost over. By the time all this chemo and radiation is done it'll be Christmas. Yikes!
I'm so over this fatigue, no hair, side effects on top of side effects.
Today may not have been a great day but tomorrow is full of possibilities.
Kim you're so right. We are getting things behind us.
Thanks for sharing everyone. Let's do this.
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Ladies, I think all of us are in the same boat as far as how we feel goes. I too had a crying fit with my MO last week. This round has had me do down in the dumps I've been avoiding everyone. I picked a fight with my husband, cried all day on Monday, and avoided every text or phone call from my mom for 2 weeks.
Now the day before chemo anxiety is setting in for Taxol #2 on Saturday. I wanted to go see the Blue Angels Show with my family on Saturday, but nope. The summer is nearly done and it's almost time to go back to school. I feel like I haven't done anything but sit around. When I'm up to it I spend my time planning for the upcoming school year. So really I'm working during my break. All this adds to my blue feelings.
Like Pink, I too am irritated about not having any hair. It's too hot to wear my hat, but my head gets chilled in the evenings.
It's ok for us to rant. We deserve it sometimes. It's a good thing we have each other.
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I took a little break from these boards, was feeling blah. Came back today to see most of you are feeling what i am feeling. I feel like my AC is being dragged out at every 3 weeks. Today is #3 for me and I'm not looking forward to it. I have a Pgh. Pirate came to go to and a Chicago concert tonight, oh I hope I'm up to it. I had a concert 2 weeks ago that we were really looking forward to going but I had to cancel. I just want my life back.
Today I'm taking popsicles to chemo. Anything I eat during chemo I can no longer look at or even smell without gagging. The taste I get after chemo is sitting in the back of my throat and nothing can take it away. I'm hoping to freeze the hell of it and maybe it will work!
On the brighter side i got my new wig for days I want my longer hair back. The short wig is great too but I feel younger with the new one. Here is a picture of it:
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I would like to say I feel 10% better today. I am still clinging to the couch a lot. The weather is in the 60s for a high, and I welcome it with all these hot flashes! This Southern girl might even be ready for these Northern IL winters (please don't quote me).
Luwusu, Thank you for taking the time to share with us your journey. We will ALL get through this, but it is comforting to know those who have blazed the trails before. Thank you for your positivity.
Sus, Adorable. Y'all are rocking some wigs. Mine remains in my closet on its stand. Maybe winter will force it out of the closet! HA!
It truly saddens me that so many of us are blue, frustrated, hurting, full of challenging side effects... I have always had empathy for others, but now having gone through this (and only 1/3 of the way done with eveything), I can't imagine I will ever be the same. (Some days that feels like I will never physically be the same, but I mean the mental impact of this is so great as well.)
My port is acting up more than when I first got it, and I cannot figure out why. I literally have to sleep only on my back. If I lie on either side, I get almost like an arthritic pain above the port in my clavicle area. I want it out, and I want to scream it from the rooftop. Whew...thanks for allowing me to say that. My nurse and DH said it's probably because I am so thin in that area that I am feeling every bit of it. I also was my lowest weight thus far today, but I sit here eating Lay's lightly salted (because I now have a lifetime supply in my mouth and don't need the regular) potato chips. HA. Actually, after 48 hours since accessing my port for fluids, the taste is 90% back to normal. Whew. I get anxiety just thinking about next Friday.
HapB, I do realize people are quite busy in their lives, and I am sorry that your support system is not what others have. It seems like you have already had your share of cancer and challenges, but I pray that you will contine to bravely endure one last time a difficult treatment. You can be proud of traveling through much of this alone, as lonely as it can be. Even with the support of many near/far, this can be an isolating matter. That term "mind over matter" is easier said than accomplished. We get one shot in this life, and I want my good life back, even if it means for now a difficult season.
Yes, I have watched the summer vacays on Facebook, but I've had some great trips in the past. Just longing for more in the future. DH says we will get there. For now, the comfort of home is honestly appreciated, but I do feel a bit like I am hiding out the last week.
God bless you all.
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AC#4 done and glad to have it behind me. I do not have a port. There was some difficulty getting my IV set up yesterday. I think it was partly because of my small veins and partly the nurse. She put it right through the vein on the first try and wasn't comfortable pushing the red devil in it so we went for another vein. She asked someone else to do it. That went in ok and the pre-meds were dripping fine. When she went to push the Adriamycin she wasn't getting the blood on the drawback so was not comfortable continuing. So, on to a 3rd vein. Same thing. So they called in what I'm assuming is the veteran nurse and she got me sorted. It was a bit frustrating but glad to finally be able to get it done on the 4th try. The Red Devil was not going down without a fight.
I have been experiences many more hot flashes now. Ugh. I did sleep ok with only waking up a few times to toss the covers. The burps are back. I think it is the steroids because they stop after I stop taking them so a few days is not too bad. I have not had the salty taste problem. Maybe Kim is right and it is port related so that's why I have escaped that one.
I read somewhere about "infusion fatigue" which sounds like we have all hit. We start out strong and then get tired of it and question why and how we are going to get through it. Halfway is halfway done but still halfway to go. Maybe a it is a natural slump emotionally. I felt it when I realized chemo is really only the start for me. Still have more procedures and decisions ahead of me when this part is over.
My Nurse Oncologist said not to stress too much over the Taxol and that phrase again - "everyone is different." There is concern for allergic reactions. Not to the Taxol but to what it is mixed with-I guess some sort of preservative? They say the reaction will happen within the first 20 min and if it does they stop it and flush with saline, give more benadryl and start again with a little slower drip. If it happens again, they need to switch to another drug. She said this is not the norm, but something that can happen. I am getting the dose dense so I go every 2 weeks for 4 infusions. Hope that doesn't increase my odds for side effects but will get to that bridge soon enough.
Susie, I love your hair! I broke down and bought another wig. My natural hair wig poofs out way too much in the humidity. It's like a real bad hair day. I have washed it and let it air dry and put oil on it to condition it. It looked lovely after I did it but lo and behold by the time I got to work the next morning, it had poofed out again. It's one thing to have a bad hair day of your own, but to have not hair and still have to deal with a bad hair day is not fair. Grrr... I could still take it to a hairstylist to thin it a bit but wanted to have a back up just in case that is a disaster.
Cysterwigs was having a 40% off sale so I bought a synthetic wig because they don't react to the weather so much. And the one I got is heat friendly so it can be styled with a blow dryer or flat iron if needed. If this new wig doesn't work out, I'm going to scarves at work and not worrying about it anymore.
luwusu - Thanks for your input. It is helpful to hear from people that have been here and can offer insights. I'll have to write down OPI nail envy. Is that just regular nail polish color you wore throughout treatment or is it special base polish? My nails are ok with the AC. Taxol I'm told is the trouble for nails. I start that in 2 weeks.
Planning to take a little time to go the the Outer Banks before Taxol treatment. No swimming in the ocean but some R&R is on the menu.
Stay strong ladies. Feeling blue is natural. Acknowledge it, experience it and soon it will pass. We are in a stressful and new place (for most of us) right now. It's like a surprise quiz has been thrown at us and we're not sure we've got all the right answers. Find the good where you can and grab a hold.
Peace and love to all.
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so I am happy to say Taxol number 2 out of 12 is behind me and went a lot easier then last week..last week they gave me 50 mg of benedryl (mind you I only weigh about 105 lbs ..and yes that is normal for me as I have always been skinny my entire life) before my taxol infusion and i felt like crap on a stick..I was dizzy, nauseous, and really shaky. I layed in a ball for about an hour until it passed. I had called my MO and spoke to the nurse about changing it suring the week. Well to my surprise they still had benedryl on call for today but less of it. In any case my infusion nurse was a godsend and contacted the doctor before giving me the benedryl and they switched it to Zyrtec. I was fine the entire time. I am home now feeling pretty good with the exception of some mild fatigue but feel fully functional for the most part. Whew what a relief..also I found out that I had a loading dose last week so will get less of a dose for the next 10 and Herceptin with Perjeta only every 3 weeks which I thought I would have weekly so it was somewhat of an easy day today.
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Susie that wig looks amazing..I am so glad I joined this group..it is nice to see I am not alone in this journey and you all understand exactly how I am feeling..together as a group we are kickin cancers ass even if we are kicking while we are crying or just giving light jabs because we dont feel good..I dedicated todays treatment to my Aunt Diane who dies of mestatic ovarian cancer a year ago today.
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Thanks for all the compliments. I managed to make it through AC #3 today with a few bumps. First the nurse couldn't get a blood return from my port. First time that happened, I was scared. She got another nurse who had me lay on my side with my arm straight up in the air(port is in my left arm) and it worked! She pushed the chemo very slowly and I got the extra bag of saline so hopefully no trip to the hospital again for dehydration. My arm is a little sore, I was there 4.5 hours. The MO said #4 is always worse so be prepared. I gained 4 pounds in 3 weeks(my last infusion) I knew I was eating a lot! He said it's good to eat now because later I may not be able to. I'll trust him. Looks like it's going to rain tonight so I'm skipping the game and the concert. Not sure I would be up for it anyway. My legs are feeling heavy, fatigue is setting in. Good news is my husband gave the tickets to a coworker and he was thrilled, so glad someone could use them!
HapB my heart aches for you. Even though I'm not alone I feel like you at times. We just have to remember not to fall too deep in that dark lonely place. Even though you just see our words we are here for you! Like I said if I lived closer i would meet you for lunch/dinner/drinks just to get our minds off this damn cancer.
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I love this site. Everyone is rocking it. Even on our bad days, we are getting through it.Hap B - It is no one's business what you wear on your head. My college classmate came to our 45th reunion beautifully bald. It is not about making others feel comfortable, it is about how you feel comfortable.0
