Starting chemo Thursday, May 31 - June Group?

pamelahope

Hello Stephanie, I am glad you are feeling good on day 7. Happy Anniversary. I am happy you feel good to celebrate it!! Better than it falling on day 3-5 post chemo. I like the way we have people from all over the country. Bless you. We will all get through this together. I know what you mean about being able to put on lipstick and mascara. On chemo day I wore my wig with mascara, eyeliner and lipstick. Friday, Saturday and Sunday and now today could not put on makeup or hair!!!! I buzzed my hair as I was starting to lose it. Pulled one clump. I now have a buzz cut with my hair. Wondering if I Buzzed too soon! Tomorrow, I will try to be presentable. Crazy, if my doorbell rings, I will run to get my hat with hair!!!!!! Easier than the wig. Rambling, but I have been in bed all day!!! Tomorrow should be better! Enjoy those good moments while you have them! Pam

mom24boyzs

Stephanie, Happy anniversary! Glad you will be able to enjoy it!



Havingfaith & Marcia, sounds like we all are having our second rounds this week. Mine will be on Friday . I find myself a little on edge about it since I have learned that the se are cumulative. That scares me a little. Plus I have my port put in on Thursday and I know it is a small hint, but for someone like me who has never had any surgeries or been ill, the hospital setting scares me a little. Then I remember that I will at least have to have a lumpectomy, or even more, after my chemo is finished, and I start to worry more. I am so grateful to have all of you to discuss this with!!



Ellebee, your vacation sounds wonderful!! Enjoy, enjoy, enjoy!!



My hair is starting to come out. The top of my head feels tender, almost like I've brushed it too hard. I can run my fingers through it and probably 15-20 strands or more come out at a time. Not sure if I want to buzz it right away or just cut it really short. Decisions, decisions :-)

Marcia1111

Happy Anniversary, StephanieJM!

Havingfaith - Wow.  I never thought about that.  Does sodium increase the chance of lymphedema?  One thing I hate about the way my treatment is going is the different advice that I get from different professionals.  For example, one nurse said it's okay to drink and another said it's not.  One nurse said, don't take Claritin and another said go for it.  These nurses are all working for the same MO!  A dietician from ACS said to eat white rice and bread while on chemo and another one said to eat brown rice and whol grain bread!  I  guess we serve ourselves best to do our own research, but for all the money flying out of my pocket to pay the doctor bills, I wish I could just get one straight answer!

Marcia1111

mom24boyz - I feel the same way.  I've been feeling really good and am afraid that after Thursday, I'll regret not getting more done this week.  I know you're scared about the surgery.  I had a BMX and reconstruction and once I'm done with chemo and  radiation, will have to have another surgery to replace the tissue expanders with implants.  At least that will be a happy time because I will not have 2 rocks sitting on my chest.  I guess I'll actually have 2 more surgeries because the port will have to be removed.  I'm like you about getting sick.  I've never even had the flu!  I know it's hard to not think about the surgery, but if at all possible, you have to try!  It will not make anything better to worry and will just upset you.  BTW, I took 2 weeks off after my BMX and you will get through your  lumpectomy or whatever else is ahead because you are stronger than you know!

pamelahope

Mom24boys, Are the side effects really cummulative from chemo? I didn't feel great with infusion 2 but it felt much better than infusion 1. I was able to handle it better. Instead of fighting it, I just stayed in bed and slept through the bad parts. I am feeling a little better. The worst is over...

Pam

mom24boyzs

Pamela, so glad you are feeling better. Maybe the reason you were able to handle the se better was because you didn't fight it this time? You knew what to expect and did what you needed to do to take care of yourself. I had been told by many people who have gone through chemo that the se are cumulative and since I got off fairly easy the first time I guess that is why I am a little worried. I'm sure it will be fine. Like you, hopefully I will do what I need to do to take care of myself.

Blessings

steelersluver

having faith, I'm meeting with my lymphedema person today and I'll ask about the sodium.  I get my port Thursday, followed by my first treatment, so I'm starting to get nervous.  I'm following the "drink a lot" advice now and it sounds like it should help.  I do not have to get the neulesta shots unless my counts go down....with 16 rounds, I'm betting they go down at some point, but I'll be happy for every shot I can avoid for now!

Husker123

Marcia1111, my MO told me that my PS could take the port out when we do the exchange surgery in late Aug. I like that since I know she'll fix up the scar that's there now! Plus one less time someone has to mess with me! I know what you mean about getting these rocks gone.

Sending all of you good wishes & light SE's!

Marcia1111

Husker 123 - That's great news.  I hope mine will do the same.

pamelahope

Mom24boys, You are right the side effects being better this time as I didn't fight it. Also, knowing what to expect this time helped, less apprehension. I am confused about the side effects being cummulative, as I have not experienced it yet. For me, I was infused on Thursday, ok Friday, bad Sat, bad Sun, slowly came out of it yesterday, today, I was able to help get the boys ready for camp, and put on clothes. Stamina is returning. It is the same pattern as last time.

I pray that since you got off easy the first time, you do the second time! Plus, I want to hear about Sweetie Pie's! I love that name!!!!

One thing I want to mention to everyone is this time I took Emend for nausea this time and last time Zofran. Emend is so much better!!!!! I had food aversion on Sunday but it was shorter lived and more tolerable. I took Emend one hour before infusion and once daily for three days. I did not need anything else. I took Emend tablet even though it was in the IV. The nurse practitioner said it was okay.

Pam

Ellendou

Hello Ladies, finally got my start date for Chemo -- Friday June 22 at 9:30 and I am so scared.  I will have 4 treatments every 3 weeks of Taxotere and Cytoxan.

I have been reading the posts and feel I just have to have a positive outlook and not think of the terrible side effects.

I have IDC on the left side and ILC on the right side, had lumpectomy on both sides on the 17th of May.  Will go for radiation after my Chemo.

pamelahope

Ellen, Welcome. The anticipation of chemo is much worse than the actuality. It is not fun but doable. I was so scared beforehand and now I am not. I need to learn more about your regimen. Every three weeks should leave you with more good days. I am taking A/C and experiencing more fatigue than some of the other ladies. I am hoping and think with your regime the side effects will be more mild. Any nausea is handled with medication. It reminds me a little of being pregnant. It really will be less bad than you think. Pam

havingfaith

Tammie- That would be great if you ask about the sodium.  Let us know what you learned, I'm also curious about your appt. with the lymphedema person.  What they have you do.  I'v asked and asked if I should be doing anything to help prevent and I get know where.

Marcia- I know how you feel about the different advice. It can get so frustrating.  My oncologist said to stay away from processed food and eat lean meats.

Mom24boyzs- I too get very worked up about the thought of surgeries, that's why I opted for a picc line instead of a port.  I just couldn't bring myself to go through more than I absolutely have to.  I do know that the port will give you more freedom to be active. The picc line can't get wet and your arm movement should be minimal. You'll do great, we are stronger than we give ourselves credit for.

Today I have an appt. to get my wig and I will see my oncologist for the second time. I'm nervous because Ill get my results back from the CAT scan I did a few weeks ago.

Everyone have a great day!!!!

Ellendou

Pamelahope - thanks for the Welcome...I am new at all of this and not sure just what to post....is it the medications I will be taking along with my chemo --

pamelahope

Ellen,

I am new to this too. Your chemo signature line looks like mine, except different drugs. You did it right. Pam

steelersluver

Kelli - They said there was no need to limit sodium deliberately, though they said they don't mean by that you can go overboard on it.  I have axillary webbing, which they classified as moderate to severe....kind of like cords or wires running from my armpit to my wrist that hurt and stop it from moving right.  I've got some exercises to do to try to break it up.  I don't have lymphedema at this point, but see a physical therapist who specializes in lymphedema.  I was also fitted for a compression sleeve to wear when I fly or drive up and down the mountains. I got the referral from my surgeon. You definitely need a physical therapist who specializes in it as opposed to the orhtopedic physical therapist.

Ellendou - Hi and welcome.  I'm getting my port and starting the day before you and am nervous too, but figure it is one step closer to knocking it out!  I'll be on 4 cycles of Adiamycin/Cytoxan 3 weeks apart, followed up with 12 weekly sessions of Taxotere.   

havingfaith

Tammie, Thanks for asking. Sorry to hear about the webbing. Ellen: welcome!! Well I got my wig and I love it. I didn't think that I would. And just in time. I'm on day 14 and while doing my hair this morning a lot was falling out. My bangs look really thin. I'll probably buzz it this weekend.

Ellendou

steelersluv will have to keep in touch as we travel this journey....not sure why but I don't get a port.

havingfaith - did you order a wig? not sure what I am going to do, I live in a very small community and would have to order from the internet - not sure about size etc etc....but have been looking.,glad you found one you like. 

StephanieJM

Good Morning Everyone!

Day 8 for me and feeling better, first 5 were worse.  I checked the site last night and didn't see any new replies, checked again this AM still nothing.... then noticed there was another page of posts at the bottom...... duh!

Aanswering some questions  (please excuse typos, lying on couch with laptop)  Someone said eat white rice and bread, someone else brown rice and whol wheat bread.  I have always been a person who eats healthy, and try to eat as close to the way ssomething was grown as possible, so eat regular oatmeal, not the little packets of sugary stuff, eat natural cheese not the processed slices, eat brown rice closer to nature than the white stuff with the vits. taken off, a piece of meat rathr than a hot dog..... follow me? Think how much each thing was processed before it got to you.   That said, some people who have digestive problems (our daughter has chron's disease) probably would be bothered with the brown rice, WW bread ROUGHAGE, so maybe that is what the nurse was thinking.  Everyone is different.  By the way.... I ws told to eat lots of protein, did you know the best protein is water packed ALBACORE tuna.  Great on a salad, or just on crackers, don't get the cheap fishy tasting stuff,, get solid packed.  I also stir a couple of spoons of cottage cheese into my yogurt for added protein.

I called my chemo nurse yesterday regarding how bad I felt, ( i keep hearing about people who work full time) I have not been out of the house even for 7 days!!  I aalso heard the effects are cummalative, so was worried.  She said for some people the first is worse, becaaue you have unknown anxxiety built up you aren't even aware of and after the treatment you just let it all out (hoping that is me!!)  But generally she said what happens the first time tends to be pretty much what you see the entire time...... oh, great!!  Also, about day 5 I had terrible stomach pain, she said take Nexum, and next cycle start taking it right away as one of the anti nausea meds hass  steroid that really hurts the stomach lining, so get ahead of it.

Regarding having the port removed, my surgeon said it was an office procedure taking it out, so you may not need actually surgery.  At first I did not get a port, was scheduled for 8 rounds every 3 weeks, but when they did the lumpectomy the tumor was way bigger than showd on MRI, US, ( I always have to exceed expectations...) so then had to have the longer chemo.  My type of cancer is found in women over 60 and hard to see on mamog.  So then I got the "full meal deal" they decided on a port, which my husband and I are both VERY happy about,  it went very smoothly.

Well my dears Mom has rattled on long enough.... I feel like Mom to you all since I am so much older, also had two daughters, foster mother.... so seem to be Mom to a lot.  I love it!!

God bless your day.

Ellendou

Stephanie - I think I could be older than you --- 66....oh checked and guess not but pretty close.

steelersluver

Ellendou - Try calling the American Cancer Society patient number.  They have info on resources in your area, including wig locations (free and paid).  I haven't decided what to do yet (and I suppose I'd better get moving on it!), but I do have the info on them for a few places to go.  I'm also in a small town, but there were several options within 25 miles of me, which is actually closer than I have to go for my chemo!  I only have the PA number, but it should be on their website.

Ellendou

steelersluver - I live in Canada (northern Alberta), there is a place about an hour away that I am going to check out, I tried yesterday when I was there but no answer, they called and suggested I stop in before my Chemo on Friday morning, guess they open early.  I wonder what some of the wigs on-line are like - some are not too expensive, but wonder about size etc...of course they look quite nice in the pictures.

I also have to travel about an hour away for my Chemo, but can get my bloodwork done here.

When should a person get their hair cut shorter - wondering if I should do it before I start Chemo...... 

Melrosemelrose

Ellendou - I'm from the April/May 2012 chemo hang out thread and periodically visit this thread.  I'll be having my #4 of 6 Cytoxan/Taxotere chemo regimen next week.  Perhaps I can help answer some of your questions that you have posted here.  If you have other questions, you can ask here or private message me. Glad to help you in anyway I can.

• Port- Reason you may not have one is that you may be having only 4 rounds.  Some oncos don't think it's necessary plus it is not an issue if you have good veins.  I have one because I'm having 6 rounds of chemo plus will be on Herceptin for a year (I'm in the Herceptin B-47 clinical trial which is to determine if HER2 +1 & +2 benefit from Herceptin.)  If I hadn't been offered a port, I certainly would have asked for one since I have veins that disappear and sink deep whenever they know any nurse/tech/doctor is near!!! 
• Hair- It is always tough to decide what and when to cut your hair.  Whatever you decide, you need to take control over the hair before it controls you.  Two weeks after my 1st infusion, my hair started to come out.  My scalp got tender and was sore so I knew it was exiting soon.  At that time, I had a short bob.  Once it started shedding, it was everywhere and on everything.  I got annoyed with the hair falling out everywhere so I made 5 little pony tails and snipped those off.  I had my husband finish the haircut with his trusty electric clippers with a 1 inch cutter guard so I now had a very very short boy cut.  It must have looked okay since my onco asked where I had my hair cut at my 2nd round!  I lost a lot of hair but still have some hair (to my surprise!)  I don't plan to shave it or cut it any further at this point since from the beginning I have wanted to see if I would lose all of my hair and when.  While it was falling out, I slept on a polyester satin pillow case b/c the hair didn't seem to get caught as much as it did with a cotton pillowcase and I also used a lint roller to get that hair off of me, my clothes and my pillow.  I wear all sorts of caps, bandanas, Buffs and hats whenever I got out.  I also have a wig I got from the American Cancer Society that I don't wear b/c it is too too hot to wear it.  No matter what you do or when you do it, you will still be beautiful!!!!

Ellendou

Thanks Melrose - I figured since it was because of the 4 treatments and they did check my veins, said they looked good.

I do wear my hair quite short, so will leave it for now.  Thanks for the pointers, will find a different pillow case and have a lint roller handy. 

Melrosemelrose

Ellendou- Are you planning to ice your nails during the Taxotere infusion?  My onco recommended that I ice my toenails and fingernails during the Taxotere infusion to help save them.  She also recommended that I use Sally Hansen Hard as Nails Clear Polish also.  I've been icing and using a different nail polish than she suggested.  The Sally Hansen polish seemed to chip a lot for me.  I'm using Essie brand Bottom/Top Coat plus a very light translucent pink (Mademoiselle) polish.  I'm able to moniter how my nails look with the light pink. I also use rubber gloves when washing dishes and doing other housework.  If you decide to ice, let me know.  I can give you some pointers on the icing.

Ellendou

Melrose yes I will be icing my nails, at least the nurse told me about it yesterday when they were showing me around where I get my Chemo....had my toes and nails done yesterday, but will add another clear coat before I go on Friday....thanks again, need all the pointers I can get.

Melrosemelrose

Ellendou- Hope this helps.  The first treatment may take longer because you are still learning the infusion center procedure.  You will probably get weighed and then your blood work may be taken to determine if your WBC is high enough for the treatment.  I also see my onco the day of my treatment and before I have my treatment.  So be prepared for things to take a little longer.  You may want to take some snacks/sandwich because you may get hungry.  You may also want to take a blanket to keep you warm during the treatment unless the infusion center has warmed blankets for its patients.  I'm lucky that mine does.  I usually wear the same outfit--- leggings & long sleeve knit shirt & men's undershirt--- so I can tell if I've gained weight between treatments.  I have my Taxotere infusion first and then have the Cytoxan infusion second.  Make sure you drink water/eat ice during the treatment to help prevent mouth sores and to start flushing that chemo through your body.  You will sit the entire time during the Taxotere infusion since you are icing.  However you definitely can get up and walk around with your IV pole during the Cytoxan.  That means don't curtail your fluid intake thinking that you can't use the restroom because you can definitely get up to take a walk or go to the restroom!!!!  Just ask the infusion nurse to unplug your IV pole from the electric plug.  My onco ordered Ativan in my IV along with the usual IV meds which helps me keep calm during my treatments.  

• Time period for icing- You will for 1/1/2 hours in total= 15 minutes before the Taxotere infusion + 1 hour during the infusion + 15 minutes after the infusion.
• Ice- You can use frozen peas in quart size ziploc bags marked "Do no eat!!!" and reuse those bags of peas.  I opted to use ice.  I have an ice tray that makes small rounded bottom circular ice.  I tried the peas and decided I liked the ice better because I thought it stayed colder longer.  My infusion center has ice available for me to use if I want to use it.
• Transporting ice to infusion center- I use a cooler with a freezer pack plus take extra infusion ice bags.  
• What to put the ice bags in- That is a personal preference.  Some just put the ice bags on their feet and wrap a blanket around them so the bags don't fall off.  Some use insulated lunch bags and put the ice bags in those.  My hands and feet are small so I'm using some neoprene wine cooler bags that I bought at Target for $6.99 each.  I figured I could use the wine bags later on.  I'm still able to hold an insulated mug so I can drink really cold water and eat ice during the infusion.  
• Hand & Feet Protection- I wear thin sports socks on my feet when I ice the toes.  The socks keep the rest of my feet warm during the icing.  On my hands, I wear a pair of knitted wristlets/fingerless gloves to keep the rest of my hands warm.  Some people take their feet/hands out of the ice periodically; however, I don't do that.
• Process- I let the infusion nurse know that i'm icing so we can coordinate when I should start the icing. Once I know when I'm going to start the infusion, I put the ice bags in the bottom of the Neoprene bags.  I put the ones on my feet first and adjust the ice bags so my toes nails are covered.  I then put the ones on my hands on and adjust the ice to cover my fingernails.  My husband helps me with this process.

Ellendou

Thanks Melrose

KeepMoving

Hi ...just wanted to say hi to everyone.  It's been a few days since I've posted and I'm feeling MUCH better.  My 1st TX was Mon. 6/11 in the afternoon.  I asked the chemo nurse when I would start feeling bad and she said by Thurs.  It seems to coincide with the stopping of the Emend, which is 2 days after chemo.  I read in the pamphlet that emend changes how chemo acts in your body.  Once you stop it, I guess that's it. 

Anyway, Thurs. came, she was right, and instead of taking it easy, I did my normal routine, kept pushing myself, and I think that's why I ended up paying for it with fatigue the next day.

Marcia1111  You're right.  The fatigue changes.  I'm also drinking tons of water and getting plenty of protein.  I like the tuna tip.  On the days when I didn't feel like eating, I made sure I drank and at least had Carnation Instant Breakfast for the protein.  My fatigue is gone, and I was even able to work this week.     

Pamelahope  Thanks for reminding me that when you're tired, REST.  I did that Saturday.

I'm feeling better every day, but not looking forward to #2.  But, it will bring me closer to my last treatment.  I plan on celebrating that day!  Get my port tomorrow, but I'm not even worried thanks to everyone.

Hope everyone has a good day tomorrow.

KeepMoving

I now have the itching scalp, too.  Anyone lose their eyebrows?  I just don't want to go around without eyebrows.  It makes it so obvious what you're going through....