Starting chemo August 2014
Comments
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for anybody with the Neulasta shot, are you getting it because of your low white blood count prior to chemo infusion?
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beatmon, ask your MO about taking Colace. It no longer have any C issues! I take one in morning and one at night. Others take Miralax but even though there is no flavor, it makes me gag! The Colace is a pill. If you can do the miralax, I was told to be sure to use it the two days prior to chemo.
Pangtidor, yes I get it to boost the white blood count and I haven't had any problems. They just do the shot as part of the treatment, doing it 24 hours or so after finishing chemo.
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pangtidor, I get the Neulasta shot the day after chemo. It is a "smart" drug in that it senses when your WBC count starts to drop and kicks into gear to help your marrow start to produce more.
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beatmon, I second the suggestion of asking about Colace. After going 5 days (I think) last cycle without "going", one Colace at night really helped. This time around I'm trying a cup of apple juice at night and one in the morning. Worked when my daughter was a toddler!
Maybe it will help me too.0 -
re: Colace vs Miralax. I was told that the Colace (also avail over the counter) only softens the stool, whereas the Miralax actually stimulates the bowel's movement. The benzos, like Ativan and compazine work by slowing down the bowel's peristalsis, reducing nausea. So pain pills and actually harden the stool, and Colace works better for that. I have been taking Miralax exclusively without Colace every day and have had no probs. I have been taking a lot of zofran too.
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cassiecat, my nutritionist said to drink the juice warm. And to use apple or prune juice. Like coffee, the warm beverage helps to get things moving better than cold.
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oh, and if you don't drink enough, that also hardens the stool and you get const. too. So put the dehydration along with nausea pills and bam, you've got your problem.
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thank you for the update Kellya, knock on wood white blood count will be ok for the next round. I read some other forums too and there are few without Neulasta shots and they think exercise helped them. I found a great Indian cuisine in St. Louis and drove me nuts. Ordered some good dishes and I should have known better they will cause big D. Lol. The best Indian dishes since 6 years ago.
I just read all the posts. We have so many active posters, I had to scroll up 2 pages since my last post (22 hours ago)...:-)
Terri thank you for the update!!! I hope the thrush won't be a problem for this round.
Cassiecat I will ask my MO about the Perjeta. Thank you for the links. Hope you have minimal to noneSE with your Neulasta. I have trouble finding hats, I have a large size of head. Even the large size wig at tlc will be 1/2 to 1 inch shorter from my head measurement. The large size wig still fits OK, I just have to make sure the hair cover the bald edges on my ears and at the back of my head. Sock head or beanies are fine, they are stretchy. I will look into the scarf and see my options to style it.
Catie57. I'm glad you had a good #3 IV time. About the tree tea oil, do you just rub it on the nails? Thank you for the video. My sister had breast cancer and had to go to the chemo, her hair just grow like a weed after chemo.
Jet gal, my nose drips a lot . The worst attack will be after each sneezing. Lol.
Cjt can you share how to make the toothpaste? I tried to message you too.
Thinkpink4ever, I will look into the scarves , will be look good for the fall time.
Kellogg I'm sorry to hear about your problem. I hope you are doing better now.
Sandy, I had breakouts on my skin too. I just use the babysoap and it's better. My head was so itchy because I wear wig at work, baby oil or coconut oil on the scalp help a lot.
Bippy, I hope you have minimal to none SE this time.
Ladyb, plastic spoons/forks help me during the first 5 days post chemo or when I had burning tongue. After that I'm back with the silverware. I always bring some plastic ware in my purse for emergency. Lol.
Fire n ice... I'm glad you are happy with this group...:-)
Purranna I'm happy you enjoy some good days during this chemo hell days...:-)
Beatmon, hope you have minimal to none SE for round 2.
Have a great weekend Kellya.
Hope everybody will have great weekend and do well with your SE .
Stay strong ladies.
Hugs to you all...
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I still can't find my happy medium. Lol. I drink a lot of water and most of the time big D. No tummy ache , big D only 1-2 a day. I tried Immodium and just made me bloated and had tummy gassy pain. Diet helps a lot with my GI issues.
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day one after chemo, neulasta tomorrow--things that are working for me: bread, oatmeal, bananas, jello noodles, potato. Water and low sugar gatorade. Have some mild nausea, just medicated and ate jello. Dinner will be saltines with some peanut butter, on the edge and do not want to set anything off! Feel okay otherwise, ugh, hate neulasta day!!!! Oh well. Did 10 min of easy yoga and went out shopping this am, got some lounge wear. Big, exciting day.
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Thinking about you all who just went through another round of chemo. Praying for very minimal SE's flor you all this weekend. Thinking about the ones who go this week. BELIEVE....we can do this!!
Have a great weekend everyone. Do something special just for you! You are worth it!!
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I had the Neulasta shot yesterday and am so achey today, even with the Tylenol and Claritin. Ugh. But my appetite has been decent and I have taken one dose of Zofran. I'm trying Sea Bands this time around. We'll see if they help. Doing better with hydration I think.
Unrelated but good news - my daughter got her casting today for her youth ballet company's Nutcracker. They do three performances. For two of them she has five parts, including a couple of solos. For the other show she gets to do Sugar Plum Fairy.
I'm so proud of her.0 -
CassieCat - congrats in your daughters ballet casting. How proud you must be!
Had 3rd infusion on Thursday 9/18 and so far managing my SE however I have noticed that I have different SE after each infusion. Just when I think I know what to expect - BAM - another new SE.
My boyfriend and I are at an Angel's game tonight and I'm just hoping I can l hang for the whole game. Usually I don't start feeling really cruddy until Sunday but this time around I've noticed when I get tired I crash hard and fast.
Hoping everyone has a good weekend with minimal SE.
Hugs to all.
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cassiecat that is awesome about your daughter! Congrats. I hope the achiness goes away soon for you.
Wizard50 I hope you do make it got the whole game. I go next Thursday for my 3rd and like you it usually hits on Sundays. I noticed last time I got more tired sooner and harder. I'll be watching to see how you do this next week. I'm praying it will not be too bad for you.
I'm enjoying this weekend before 3rd infusion next week. I also am going to Look Good Feel Better this week. I'm excited about that.
Hang in there everyone
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Cassie and Bippy, hope the Neulasta doesn't hit you hard this time. That Neulasta SE has worried me, everybody has aches after the shot.
Cassie, kids are always the joy during this hard time...:-)
Wizard and hope50, I talked to the MO about the SE from first to last chemo. He said most of the time he sees the same SE but the fatigue will be worsen chemo after chemo. Yikes... I'm worried about the oncoming flu season too...:-(
Hugs to you all
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cassiecat - congrats for your daughter, really great news. Try Aleve instead of Tylenol for ache.
I had 3rd treatment on Friday. I have been passing out all afternoon. I sit down and fall fast asleep. Maintaining SEs so far, had my Neulasta shot this afternoon. Usually Sunday is mt worse day, so will keep you posted.
My son left this a.m. to go back to China. I miss him already. He was a great support while visiting.
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hi pangtidor
I get the neulasta day after chemo as well. I did get aches for longer after my last (second) infusion, it lasted almost 5 days, but I only had to take a painkiller the last day. They make u take Claritin daily during those days which is supposed to help, not sure if it does as I haven't been brave enough not to take it
My white blood cells have been acting weird, after the first neulasta it was in the 30s first week and dropped to 12 the second week. With my second it was only at 12 and dropped to 8 by the second week. Still within range but worries me a bit if the reduction is due to the cumulative effect of chemo. So I guess I'm glad to be taking it.
Hope all is well with you and everyone else here. I've been reading daily. I get my third infusion next week and will post how it went.
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I wanted to post some info on my wig experience for those who may be interested. I believe most of you here prefer wearing scarves and I definitely agree it is the best. I do however have a wig which they call full lace and it is extremely light. I tape it using double sided wig tape (which I cleared with dermatologist) you can tape it all around or I have found that taping ear to ear is very comfortable as it leaves the back open and I can touch my head if I want to. I have showered with it and washed and dried like my own hair. I also colored it with hair color I got from Walgreens to make it a shade I like. I keep it on for about 4 days and then take it off.
Reason I choose this is your scalp breathes through the lace and does not sweat, plus you can put it up or style it the way you like and it looks natural. I did try some regular wigs (which were very expensive) and could not keep it on my head more than a few minutes but have been doing fine with this full lace. They are pretty pricey too online I see around 200-300 but supposed to last almost a year (since you treat it like regular hair it does get damaged apparently).
Let me know if you ladies have any questions as I went through learning with trial and error on this one
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catie57, hang in there. Hope you get through this Sunday fine. My chemo days are Tuesdays. On my 1st chemo I worked 12 hours on following Thursday to Saturday and passed out on Sunday. I was off 7 days after my 2nd chemo and just lay around and had many naps and felt better. Thinking of you today.
Wind girl thank you for Neulasta info. I am not a hat person but like the beanies, sock heads and scarf.I won't spend 200-300 for a wig but I haven't used my cancer policy hair product benefit. I got a free wig from ACS, nobody even know it's a wig. I may look into the lacewig, the cancer policy will cover most of the cost.
Carol thank you for the toothpaste info!!! It works great!!!!
Have a nice Sunday. Hugs to you all.
Shirley
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My oncologist was pretty clear (or so I thought!) that he didn't want me using any NSAIDS. He only approved Tylenol. I'm going to ask about that and find out why.
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Cassie: my MO prefers Tylenol but said it was Ok to use the other as a second resort. The Aleve plus Claritan is wonderful for me. I have had no bone pain at all. Hopefully he will approve it for you.
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Hello everyone -- I had a wonderful trip to the Oregon Coast last week! It was my Mom's 91st birthday, and my friends volunteered to come with us so I didn't have to drive. The weather was perfect, and I got plenty of exercise walking and tide pooling. I left on day 10, so most of my SEs were in abeyance, though my right eye kept dripping and it looked like I had a black eye. I have an oncologist check it when I got back, and she didn't think it was a cause for concern.
Monday will be my third infusion, and I just started the dexamethasone. I hope it puts me in housecleaning gear, as my place could use some work. I have truly enjoyed the past week of near normalcy, and my friends are showing up to keep me moving and active during the good days -- very important for those of us who live alone.
Best wishes for everyone sharing this journey.
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I am to use Tylenol while doing AC, and when I switch to taxol I will use Motrin. I believe AC is hard on kidneys so Tylenol is best. Taxol is hard on liver so you use Motrin. I could have it reversed but Tylenol for me right now.
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great picture Mullerin! Sounds like it was a great little trip!
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been gone awhile. I felt much better after chemo #2 compared to after #1, but chemo #3 is kicking my butt.
Half way done!
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Hi Ladies!
Apologies for being MIA on the board the past few weeks! Things were crazy busy and unfortunately I was finding myself doing too much research on Google and driving myself crazy about all the findings and I felt like I kept finding stories about women who shall we say the outcome was not a positive one and my brain went into overdrive. So that's when I chose to step away from the internet for a little while.
However I'm so happy to report that the surprise Disney trip for my girls last week was awesome! The family had a wonderful time and I am proud of myself for stepping out a few times in a scarf and the last day there I just wore a hat to the one park. I actually had a lady ask me if I was a survivor..I said yes you could say I am but more I'm still battling.
I wore my wig most days and rode the rides without a problem. Today I actually went to the store in my town with just a hat on and didn't care what others thought...that in itself is huge for me.
Got a call last week when I was away that my genetics results are in..trying not to stress about the results but will be calling to make my appointment to go over them. Heading to the doctor tomorrow for my pre check up and gearing up for round 3 on Wednesday.. At least I'm half way there!
Below is a selfie I took at the pool at Disney last week when I just sported the hat.
Hope everyone is doing well and I will have to go back and read up on what I've missed.
Hugs to all!
Karina
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you look great oceanbreeze!! I wear hats on the weekends all the time. I know people wonder what's going on, I just can't worry about what others think! We just have to worry about us, and keep fighting!
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it has been a heck of a week. I ended up in the hospital on Thursday because of a 102 fever. My counts had dropped to 100 and it had elevated my heart rate and I had gotten dehydrated. They put my on different meds along with doing an x-ray and CT scan to find out what was wrong. I had an infection in my colon. I got to stay two days in the hospital and was excited to come home yesterday. However, I have now gotten the mouth sores and fever blisters from being so sick. I have a follow up this week for more blood work. My treatment #3 is scheduled for 9/29. Oh boy! Not looking forward to this. Now my MO wants to do the shot after chemo so that we don't have my counts drop that low again. Not sure that I want it when I read what everyone writes about it. Does it really help? Or do you just get sick from it?
I have another question for everyone. Did anyone decide to take FMLA and short term disability while going through this? I have been working but getting harder to put in the hours with always being sick or having something go wrong. I feel that I am more stressed out with trying to work but not feeling good to do it. I am at a crossroads on what to do.
How does everyone get through this mentally? At times, I just question myself if I can do 4 more rounds of this. I guess that I am just having some down days.
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The shot does not make me feel any worse. I take Aleve and Claritin and am OK. I feel weak from the Chemo and a few other minor SE's but none of them from the shot. It does elevate your white counts after they are taken down from the Chemo. Mine were 20 last week on Chemo day. Hope you feel better soon. Hugs. Amy
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Jello - sorry you had a set back. Can understand why you are not mentally ready for next round. I am sure ur MO will make sure you are ok before next treatment. It's not always easy to wrap your head around doing these treatments. We are teaming up with an enemy in a sense. I just keep telling myself "cancer is my enemy and chemo is cancers enemy". Be strong and listen to ur body thru SEs so they are minimal. You are in my thoughts at this time as all the ladies are.
I had 3rd infusion this past Friday. Have been very tired but otherwise not too bad with SEs this time. As soon as I feel any SE coming on, I take something for it. Prevention is everything to me. I am not a meds person, but I also hate being or feeling sick. Half way there for me now, 3 of 6 done. I can't work today, no energy, so already know that is how I would feel from other treatments. I modified my hours the week after treatments. So far that seems to be working out and luckily have a couple of bosses that are working with me. Since I work for 2 different Dr. offices.
Hope all the ladies that just had treatment recently are managing SEs and if not, call ur MO. No reason to be more uncomfortable then necessary. Wishing everyone a good week ahead.
Cathie
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