Starting Chemo in July 2017
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Good morning ladies
Yes I took my Ativan then I went to sleep. Somehow I felt my MO tried to tell me cutback on Ativan when I feel better. I will check with them when I have my second AC. Meanwhile I'm going to take my .5 mg Ativan.
Here is a place for us to vent and we all understand this journey is not a fun one.
As far as eating OMG I eat every 2 hours. I need to be careful what to put in my mouth. So I stocked up fruits and no sweets, everyone told me cancer likes sweet so I cut as much as I can
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Matryoshka
When I started to lose my hair even though I knew it was coming it was still a shock. I stood in the bathroom and pulled out clumps of hair. By the time I finished there was a bucket full. Couldn't believe that much had come out and there was still more to come. Next day I sat outside under the tree and plucked the rest and let it go. Blowing in the wind! Kind of therapeutic. Bet the neighbors were having either a good laugh or wondering where all the hair was coming from getting in their BBQ or flower beds.
Still have a hard time seeing myself with no hair. Even after a month I'm still getting use to it. But it does grow back. I decided not to shave the rest of the peach fuzz off at the recommendation of hair dresser. Don't want stubble irritating on my pillow or in my hats. So far it's worked out. Not sure how she's going to cut the peach fuzzz that's left because it is growing. Looks like baby's head. 😂😂
Each person is different in how they handle the hair loss. For someone who faces the public every day or has to work its difficult. How do you go to work with hair or be day and none the next. I don't look good in wigs. Tried on a dozen or more. Even the clerk said I'd look better without one. When I have my baseball cap or my buff on no one can tell I don't have hair. But then I don't have to work. The girls at the grocery store don't seem to notice. Sometimes when I get those stares I whip off my hat just for effect.
Hang in there it'll come back just as beautiful as ever.
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Pink - it's so sad to read you pulled your hair out, I don't know I can do that. I might have to shave it at my hair dresser. Coming Friday is my 2nd chemo I might not able to keep my hair after that infusion.
Question - is second round of infusion SE same as first one or more intense??
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Hello everyone! I just joined this site and am hoping it isn't to late to start this journey with you. I had my first AC treatment on July 13 and the second on Thursday. Two more to go and then either weekly or dose dense taxol. I would love to have people to go through this with. Today my hair is really starting to fall out. I didn't do a buzz cut first because I just wanted to keep it as long as possible. But now I'm thinking it's time to pull out the scissors before it gets all over the place. I hope everyone is having a good day!
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JenRuns - I like this spot for the same reasons! I've been pretty okay through the process, but sometimes it's nice to know there are others in the same phase as I am, and know that the 'little' things can be big things at a time like this!
PauletteK - For me, the SE were exactly the same as the first round, until these crazy hives showed up! But, I think I may have figured out what triggered it (will confirm with MO on Tuesday). I wore a t-shirt type dress on Friday and did some errands over my lunch break, which meant walking in the sun a lot. I did put sunscreen on in the morning, but didn't re-apply. I think I got a bit of a sunburn, which then led to hives on my face, neck and upper torso (all exposed to the sun), and I think a chain reaction went from there. I'm in my low WBC days, so my guess is any little thing that triggers a reaction can become a larger reaction?? Anyway, I hope that your SE are good for all rounds. Like I said, everything was exactly the same until Friday night.
Thanks for the kind words everyone! As I said above, I've been trying to figure out the trigger point, and I think it might be too much sun exposure. I'm not used to being so affected by the sun, I generally don't burn, and haven't had issues. But, this chemo is no joke, and I need to stay on top of the sunscreen way better! I also realized that my scalp was itching right in the spot that was open to the sun while wearing a scarf like a headband to cover some of the thinner areas. I've always had thick hair, so this whole thin hair thing is new to me, as well!
My MO put in prescription for prednisone yesterday (short dose, just 6 days) and I started it yesterday evening/night. What a difference!! I took a benadryl before bed and again at 3AM when I woke-up. Mainly to keep itching at bay and to sleep, which worked. Today I feel like a new person! Still a bit sensitive, but the raised welts are gone (for the most part) and now my upper chest and neck look more like a sunburn, which it probably is!
I haven't taken any oral benadryl since waking up this morning. I have put some topical cream on stubborn spots, but this is livable now! I'm even going over to a friends for an afternoon hang out today. Yesterday I couldn't even get off the couch!
I'm really hopeful that this is just from the sun, and that we'll continue treatment as scheduled (just two more rounds!). Maybe an extra prescription of prednisone, just in case it happens again.
Will report back after I see my MO on Tuesday.
Happy Sunday, everyone!! Remember the sunscreen!
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LoJo100 - MO warned me about sunblock now I really need to seriously protect myself. When I do my morning walk I tried to wear long sleeves to cover my arms.
Prednisone is another steroid drug it will make you hungery again. I believe our bodies are loaded with steroid that's why we are hungery and wide awake couldn't sleep.
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Pink - thank you for sharing such a personal moment. I cried reading it, as the loss of my hair is so new and raw. My loving family is still so relieved over the negative bone scan that they see the hair as of no consequence and I agree and understand. That's how I want to feel too, but right now it hurts.
paulette- yay, sleep! I can't speak for everyone, but this second infusion has been almost the same as the first. However I knew what to expect and have kept things under better control. Such as mouth sores, a tendency to diarrhea etc. We'll see what #3 has in store.
Jen - hugs to you, and we love you too lady! So glad you share with us.
Weeping willow - this is the perfect time to chime in. Welcome!
Dodgersgirl - been meaning to thank you on your advice about how long you took the nausea meds. I pushed mine out an extra two days after your advice and it really helped. Thanks
Theresa
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Paulette, it was sort of the same for the SEs after #2, but different in a way. I think I am better managing the indigestion (Prilosec + Zantac, and a psi band), but this time I got more joint pain (totally managed with Claritin + aleve) and I'm more tired than last time (naps!). So.... different but similar and maybe just more intense.
To prep for #3, I'll make sure there are more "ready-to-eat" snacks and make sure my schedule allows for napping!
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JenRuns - Yes, sunscreen and protection! When I go for a hike, I wear my sunshirts and long pants and a hat with tons of sunscreen lathered on. I think I let my guard down because I was "just" going to be out for some errands. Oh my! Oh, and yes, the prednisone will mess with my eating, I'm sure. I took it a few times during my teenage years (due to asthma) and I remember it made me want to eat everything in the kitchen, all the time!
Pink - Thank you for sharing your personal story. It is quite a nice visual for such a hard time.
Weeping Willow - Welcome!
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Thanks for the welcome everyone! I chose my user name -weepingwillow because the receptionist at the MO office has given me that nickname. I can't seem to walk through those doors without crying. I am trying so hard. Soon I want to just be willow! Start fighting and stop this deep sadness that I am feeling.
Pink-thank you for sharing about your hair falling out. I am in that place today. I just want to go somewhere outside and give my head a good brushing but I know that will take most of it out. I have been wearing scarves the last few days just so I didn't have to get to this moment. But with two chemo treatments down there is no turning back now!
Paulette- I'm on second treatment, day 4 of AC. The first time I felt horrible right after so this time I took anti nausea meds as soon as I left the hospital so that didn't happen again. Another SE I had last time was getting super emotional on the afternoon of day 3. I made a note to take an Ativan at noon but didn't follow through and had the same issue this time. So for now, I feel like there is a pattern.
Hope everyone is having a good day!
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Hi All,
I'm doing 4 rounds of TC. First was 6/29 & 2nd was 7/21. I'm at day 11 now & the 2nd round has been much better than my first. I think the main thing is that in Round 1 I only took the Claritin on the day of the Neulasta shot. This time I continued it for 4 days after. I had a lot of pain in the first round and virtually none in the 2nd. I also had vision issues (mostly sensitivity to fluorescent light) in Round 1 and my eye doctor prescribed eye drops and an eye mask & I haven't had any problems this time. In round 1 I woke up sick to my stomach most every day for the first 10 days, this time only 3. I'm also taking L-Glutamine (approved by my oncologist) to prevent neuropathy. I didn't find out about this until after Round 1. I was able to get on the treadmill (just walking) most days last week and that didn't happen at all after my first treatment. I did not have mouth sores with the first treatment & hope to avoid them this time as well. So far, so good. Hoping rounds 3 & 4 will be like this one.
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Ladies, thank for all the tips for second round of infusion, I will know what to expect this time, so should be much better.
As far as hair, I know I would cry once they come down.
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teese- you are welcome. It sure made AC 3 and 4 easier for me by extending the anti nausea meds out like that. Hoped it could help others.
Ref hair loss - once it started falling out, I hated showers cause that is where I lost the most noticeable amounts at a time. So once I ended with most hair loss but still patches of hair hanging on making me feel like I had mange, I stood in the bathroom and pulled out the rest of it. I felt so much better when it was all out so much better than the mange look. But do still feel very self conscious about being bald. Hair is so not very important when fighting cancer but it sure is emotionally important. Wish I looked good in wigs
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weeping willow - it's hard and some of us have our emotions always running so close to the surface. You will loose the sadness, I'm rooting for you. It's good to have a place to share feelings that are difficult to discuss elsewhere.
Dawn - glad you joined us. Sounds like you're managing things really well. Are you on a every three week infusion schedule
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weeping willow - all of us are in the same boat of fighting the cancer and we will be the strong woman warriors that we win on the end. I lost count how many time I cried about this sickness, but I don't want my husband to know my sadness because his path isn't easy also. I always afraid of getting burn in the kitchen or ate the wrong food I became panicky.
We are here to give each other supports so our road will be easiler I hope
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Hi Teese - I am on a 3-week schedule. Treatments 3 & 4 are scheduled for Aug 10 & 31.
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DawnP64: welcome to the group! It looks like we are in the same regimen. You are just 3 weeks ahead of me. My first round was on 7/20 and I will have round 2 on 8/10, and hoping I can manage the SEs better. I think I underestimated the power of Claritin for bone pain and will remember to take it more often after the next round.
Paulettek: I was able to sleep with Tylenol PM. My MO also told me to use Ativan to counteract the steroid so I stopped Ativan when I stopped the steroid. Since I was still having bone & joint pain the Tylenol PM minimized the pain as well.
Willow: this is a great place to share your feelings. We all have had all kinds of emotions throughout this experience. Yes, we'll all be stronger after this is all over and we look back on it... But while we are going through this, let your emotions out at the moment. Then come here and tell us all about it. 😉 We won't always know what to say but we are all here listening and supporting you!
For those of you that have wigs, did you get them online or locally? I checked one website that was recommended by a friend with alopecia, but they have a 15-day turnaround. I guess if I order now it'll get here when I will really need it. I plan to attend a Look Good Feel Better session before my next infusion so hopefully I can get a wig at that time.
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Thanks sunnyjay. Have you checked with your breast care navigator on the wigs? I got a free one that I think came from the American Cancer Society. I haven't used it yet. I'm doing the DigniCap with my treatment & have kept most of my hair so far, but I have a growing triangular bald spot at the top of my head. I've bought a variety of scarves/do rags and may be starting to use those soon. The wig that I have has so much hair it feels strange. The woman who gave it to me told me they are made with extra hair and I could take it to my hairdresser to have it trimmed up. I hope to get it trimmed up this week.
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Hello ladies. Wanted to just post quickly that I totally agree with JenRuns. Although I don't post that often, but I know that there is a space here with wonderful women who cares and understands and always have a kind word for me.
Being here really helps me handle everything much better. Thank you all for making me a stronger person!
Need to zip away now to get dinner for the family! Will try to catch up on the posts when I can!
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Morning all,
Woke up feeling more like myself today, more energy and the nausea seems to have left for the moment. Slept through the night except one trip to the bathroom. Awwww, feeling normal.
I have the last physical therapy session this afternoon, I've been a little disappointed with my therapy. I was fortunate to get full range of motion back before I started therapy. I had hoped she would work with me on getting back to using weights and weight machines. She says go for it, but slowly, but never really works with me on it. She spends most of the time typing up my care plan, very little hands on work. Oh. Well.
Last infusion, which was my first, I still felt puny at this point. So thankful for at least a good morning.
Praying we all havemanageable SE today, hugs!
Theresa
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Morning...finally feel like myself again too! I am either Day 6 or 7...chemo started last Tuesday. Not sure how to count those days. Nuelasta knocked me on my ass last week...very fatigued, low appetite, mild nausea and some shakiness since last Wed evening. I am having some issues with constipation...most likely caused from meds, lack of running and lack of coffee in mornings. I am drinking a ton of water, nuun and some Gatorade. I am also tolerating La Croix. Still having some mild nausea. Was taking Comapazine but yesterday switched to Zofran. That seemed to help more. But think the nausea is caused some by constipation too. Need to figure out something for that. I hate taking pills/meds. I don't even use Tylenol for headaches...use peppermint essential oil with almond oil. So last week when Dr told me Zofran was 2nd choice, all I heard was don't tAke it. So I held off and held off. Finally gave in and felt better. I think I need to tell my Dr that the problem is not going to be me misusing these meds..the problem is getting me to take them at all. Did yoga yesterday and today hope to get a run/walk in on treadmill. It's horribly hot here. Also want to get some back to school shopping done this week and middle son moved back home this weekend from college apt for this school year so need to get his crap organized. I am excited to have him home though. Wishing everyone good days and minimal side effects.
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Everyday I try to remember my blessings...a friend gave me a blessing bracelet recently. Its a good reminder that there are blessings every day even if it doesnt always feel like it. My blessing today is that my down time this past week has given me the oppurtunity to play a lot of monopoly wih our youngest son...a 13 yr old. We dont always have time to sit down and play board games together for hours. We started this game last night and kept it up to finish today or tomorrow . My heart is full.
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count me in on the hair loss. Such a mess in my shower. I had an emergency haircut last week . She took it down to an imch, course that inch is still coming out. I used a squeechy on the shower floor this morn as i also did a quickie shampoo.
I look so pathetic. Got lots of scarfs but also decided the neighbors can just stare.
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Unable to post my updates !
So, 2 weeks of chemo is done(out of 12) - first week was Pacli + Cyclo. Second week was just pacli. Hemoglobin has dropped from 13 to 10 - no major reduction in WBC. 50,000 reduction in Platelets.
No major side effects - minor constipation + tiredness on 3rd day of chemo...gets much better from 4th day.
I am hoping this would stay like this for remaining 12 weeks
And yes, for now, minor hair loss...maybe because of cold cap ? or maybe it would when 3 weeks are done (1 full cycle of pacli?) //
sunnyjay - your DX + treatment is almost identical to mine! What has doctor advised you about getting radiotherapy (5 weeks) after chemo is done ?
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Runnermum: Love Monopoly! I haven't played in ages! Isn't it nice to be able to have some downtime (minus the side effects) to spend with family? I have been counting my blessings a lot more lately, especially since I celebrated another year last week. This weekend my sister will be getting married so I will see extended family so I'm looking forward to that!
Regarding your nausea, have you tried to relieve it with crystallized ginger candy or ginger tea? You can make your own tea by boiling raw ginger for 20 min or until it reaches the desired strength. Add honey for flavor.
I have also used peppermint oil with coconut as my carrier oil and rub it on my belly whenever I feel bloated. I didn't think to try it for constipation but it may help move things along. Others here have used Smooth Move tea, so that may help if your local grocery store has that. Hope you feel better soon!
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sunnyjay...thank u! I actually went and grabbed the sea motion bracelets at Walgreens this morning. They do seem to be helping...not sure if it is placebo effect or not. Yes I use peppermint oil for belly aches too so good idea to run on belly for constipation relief. I have an awesome iced green tea-ginger recipe I make by boiling ginger and adding green tea, mint, honey and lemon juice. It's delish but the nausea has made it sound bad right now so hesitant to try it right now as ate something the other night when I wasn't feeling good and now the thought of it makes me nauseas...bad!! almost grabbed the smooth move tea but tea in general sounds bad right now. Have so much fun at your sisters wedding! We have had 2 family weddings since i found my lump in April...they've been such bright spots for me and fun memories!!
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Teese, my PT was a little more proactive using light weights and bands. She told me to start with light weights 2 lbs and just build up to 5 as I get more comfortable and not straining. The exercises were chest flys and side raises. I had some tightness at my last session 3 weeks ago but these exercises have helped so much.
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On wigs: I got a new, free Jon Renau wig from the American Cancer Society, as well as two knit caps. It was actually a great experience. There was an amazing volunteer there who spent an hour with me. You are limited to what's there, so if you really want it to look like your hair, you may be out of luck. The volunteer told me I can always come back, look, and exchange if they get something new that is closer to what I want. I am pretty happy with that wig- it's a lot like my hair, but black instead of brown. It is synthetic. For some reason, all of the Pantene Great lengths human hair wigs were blonde.
I got a second wig at my treatment center, which has an exchange, so you can use a wig, return when done. This wig looks a lot like my hair does when it is long. It was pretty tangled and damaged, but after a couple of hours of work, conditioning, detangling and trimming, it looks really good. If you like close work, it's do-able, and I have a lot of experience detangling tightly curled hair, but it could have been terribly frustrating.
On other things: It took a while for my stomach to settle this a.m., so I could not walk my daughter to school, which was sad. That has been "our time" lately. Runnermum, I love your Monopoly game story. I have definitely been going out of my way to find special time with each kid, and it has been really nice. Definitely blessings to count. They are being so great thru this.
I made a smoothie with banana, peaches, blueberries, yogurt and orange juice, and it tasted good, and I think it will stay happy in my stomach. I made zucchini parmesan last night, which also had flavor.
Weird but good SE: my skin feels super soft, don't know why. Maybe all the extra water I am drinking
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So much news! I laughed so hard at Leatherette's descriptions, "3 am frat party", " drunk Zombie". And also pink_is_my_colour's hair on the neighbor's BBQ comment! Thanks for that!
Hi Weeping Willow!! I'm an easy cry-er, always have been. It's just who I am and I stopped apologizing for it a long time ago. There are still times that I sure wish I had more control over such a visible sign of my emotions!
DawnP64, we are on the same chemo recipe, I had my first on July 25, will have my next one on the 15th, I guess. Will pick up my schedule when I see my MO's nurse and have lab work in a couple of days.
The only SE's so far seem to be from the Neulasta and from the steroids crash. I'm not sleeping well due to ongoing bone pain, but I'm able to nap during the day if necessary (and it's pretty much always necessary).
I have so much respect for you ladies with jobs and kids in the house! You are amazing.
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theantz - I met with a RO a few weeks before starting chemo. He recommended the same timing, 5 weeks.Since he said my case was borderline needing it, I still haven't decided whether I will go through with it.
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