Starting Chemo June 2013!?!?!
Comments
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I get every kind of motion sickness. Morning sickness so guess that means I'm not going to do well? Well. We will just have to see wont I....
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Here is the link to the Important Threads for Chemo Newbies--- You will find the list of Tips. and other helpful threads dealing with the chemo.
http://community.breastcancer.org/forum/69/topic/785189?page=1#idx_1
If you are planning to ice your nails during the Taxotere or Taxol portion of your infusions, let me know. I will post some instructions/ideas on how to do this. The icing is to help prevent nail damage from that family of chemo drugs.
I know some of you haven't started yet and the anxiety is high. The reading of others chemo experiences and the list of possible side effects don't help but the reality is you are preparing and educating yourselves so you can handle whatever comes your way. That is taking control and a very positive thing to do while in chemoland. I am 10 months PFC with 6 rounds of Cytoxan/Taxotere. I was very fortunate and had minimal side effects. I iced my toe nails and finger nails and had slight nail coloration and some horizontal nail indentions. Each indention seemed appear after with every round of chemo. I kept a food diary and drug diary so I wouldn't forget to take my meds and also to keep track of what foods I ate seemed to work the best. I also ate 5-6 small meals so that I always had a little something in my tummy. It is also better to take your anti-nausea meds with food since those drugs on their own can cause nausea. If you experience side effects such as nausea, constipation or diarrhea and those effects seem to linger, don't wait to call your onco/infusion nurse and think you can ride it out. You just need to call to get some help so that the onco can adjust your meds and help you get through this chemoland time. The truth is no one really knows what side effects you will experience since everyone's body reacts different to chemo. Don't think that you are bothering your onco because it is the job of the onco to help you. Doesn't matter what time of day or what day of the week it is, there is always an onco on call to handle these times.
Wishing each of the best and just know there are those who have travelled before you here so you aren't alone and your group here is gathering to help carry and support each of you through. I don't want to intrude on your group but if you have questions, I'm happy to help.
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Thx! How did you ice your nails?
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Melrose - thanks for all your wealth of knowledge. I would like to have instructions on how to ice nails if you wouldn't mind.
Congratulations on finishing all your rounds of treatment, I'm sure it is a big relief to have it over. -
For me, to ice my nails, I bring along plastic baggies..filled with ice from home. I have 3 plastic bags. I hold onto one with both hands and place a bag over the top of the nails on each hand, so ice cold is touching all the fingertips.
For my toes I use frozen bags of veggies.....I sit with the soles of my feet together, then wedge one bag of veggies between my toes and place a bag of veggies on either side of both feet at the toes. The chair reclines, so I have the foot rest up to do this and my feet on a pillow (so my ankles are comfy)
To keep all this stuff cold I have it in a cooler bag with ice packs. My last chemo was delayed by 2 hours and everything was still frozen enough to keep me cold.
All of the I icing is done during taxotere (the chemo nurses tell you which drug you are getting when they change IV bags-or just be sure to ask, "which drug is that?" )
Also see if you get ice chips at your fusion location to suck on during taxotere. I buy an icee from 7-11 and switch between sucking on ice chips and drinking my icee in order to ward off mouth sores (it's worked so far during my two treatments). If your infusion location does not have ice chips then I would recommend adding a bit more ice to your cooler bag to use for that purpose.
I also bring one of those big red solo cups to hand to my nurse to bring me ice.
(She doesnt mind). I use almost all the ice in the one hour taxotere drip, along with my icee from 7-11.
And final thought, usually by the last fifteen minutes my toes and fingertips are so cold that I take off the ice. They are all red, and I know they are cold, so I figured it couldn't hurt. I have not had any ridges in my nails, (toes or finges!). Also at some point during taxotere I get up to use the bathroom (sometimes more than once) as I am always drinking a lot of water during chemo. So wear something easy to get on/off your feet if you will be icing.
Pat -
Oh!!!! I have always had a terrible time with motion sickness!!!!! I was wondering if this could be why I am so sick!!!! I sit in the front with all drivers, limos, taxis, etc. Today is a blessed day!!!!!!! BTW, I posted pictures of my hair removing party on my face book page. If any are interested..................Janette Crotinger Good Luck to all who are starting recently or getting ready to. It is not a party, but keep thinking tomorrow will be a better day and eventually it will be OVER!!!!! Thinking of you and so glad we are here to talk to
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Netter - I just sent a friend request to Janette Crotinger so hope I picked the correct one.
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I did get into Janette Crotinger's Facebook page but couldn't see your posted pictures so am thinking I might have the wrong person?
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Does anyone know what steroids r on their infusion?? The one I had( starts w a d) is making me jumpy and not sleep!!!!!!
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ICING TIPS: Always clear anything you want to do with your oncos. You will need to clear it with your onco about icing since not all oncos will allow icing during the Taxotere infusion. The Taxotere infusion time is about 1 hour whereas the Taxol infusion takes approximately 3 hours. At the suggestion of my onco, I am using clear nail polish on my nails to help keep them strong and also icing the nails to help prevent nail damage which is a side effect of Taxotere. She suggested that use Sally Hansen Strong As Nails Clear Polish but I switched to Essie polish since it doesn't chip as much as the Sally Hansen brand. Essie polish costs more but for someone like me who never used nail polish before chemo, the fewer times I have to apply polish the better. I don't mani/pedis but some do. I'd rather avoid the germ issue at nail salons and taking of a chance of getting nicked.
ICING :
- 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. Some have used small reusable/refreezable ice bags you can get at the drugstore in the first aid department. 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. I always bring an extra bag of ice just in case I need 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. I have pretty small hands/feet which explains how I am able to use those Neoprene wine bags.
- 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. If you don't have knitted wristlets, you can make some from men's socks by cutting holes in the toe area. 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.
I know the Taxol icing period is longer and one may be discouraged about wanting to do the icing. However, to deal with the nail issues of lifting and discoloration is not easy since nail problems can be painful. To this end, getting through chemo does involve a little work but just knowing that you are doing everything to help yourself will help you feel more in control.
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FOR THOSE WHO HAVE A PORT FOR CHEMO : You may want to ask your onco for a prescription for EMLA cream (lidocaine) so you can numb the port area before you leave home for your round of chemo. If you forget to apply the EMLA cream or don't receive a prescription, ask the infusion nurse to spray the port area with numbing spray. That way you won't feel the poke when the port is accessed.
If you receive a generic EMLA cream at the drug store, it may not come with any special coverings(Tegaderm coverings) for the area to put on after you apply it. You can purchase Tegaderm coverings at Walgreens/CVS but they are a little pricey. In order to avoid getting the EMLA cream on your clothes and other places, just place a 4 X 4 inch square of Glad Press N Seal plastic wrap to cover the area. Make sure you avoid the temptation to spread the EMLA cream on the port area; I'm told that your fingers will be numb for quite a while!!!!
If you aren't prescribed EMLA cream or not allowed to have the numbing spray at the infusion center, ask the infusion nurse to ice the port area to numb it.
If you just got your port right before your chemo, just know that you can't use EMLA cream on an newly sutured area. Ask the infusion nurse if there is anything that can be used to numb the area if you have a new port.
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FOR THOSE GETTING A NEULASTA SHOT AFTER YOUR ROUND OF CHEMO: You may want to try taking regular 24 hour Claritin to help with the bone pain that may accompany the Neulasta shot. There is an ongoing clinical trial evaluating Claritin to prevent the bone pain. Here is the link: (clinicaltrials.gov/ct2/show/NC...)
According to the clinical trial, one takes the Claritin (10 mg) once a day for 7 days beginning the day of the Neulasta treatment.
I had my first Neulasta shot with my 3rd round of Cytoxan/Taxotere and took the Claritin. The reason I did not receive the Neulasta after the first infusion is because my onco administers it when it is clearly warranted and because of the chemo regimen I had. The Neulasta shot is expensive so insurance companies may not approve the shot unless a patient needs them. If one gets dense dose A/C ( which means you receive it every two weeks), the Neulasta shot or Neupogen shots are administered after the first round. This is because the body recovery time from that round of chemo is 3 weeks but because it is administered every two weeks, the body hasn't had time to recover. I had a high spikey fever with chills which caused me to start taking a Neulasta shot after my round of chemo.
I did not experience any bone pain from the shot but I did have have the muscle aches and some joint pain which was attributed to the chemo. The Claritin doesn't help everyone but it is worth a try since from my understanding the bone pain may be intense. The Neulasta/Neupogen will help keep you out of the hospital/ER if you get a high fever/infection. Just remember to ask your onco about trying the Claritin before you take it.
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HAIR (I know that this topic is not an easy one for us but here we go!!!)
As each of you are well aware of, hair is affected by the chemo. this is just a very quick read on hair loss just to give you a brief idea of what to expect. Handling the hair loss is very personal and so the decision is up to each of you as to if and when you cut your hair and how much you cut. There are no written guidelines as to how much to cut or when to cut. It is what you feel the most comfortable doing. Whatever you decide to do, take control over the hair before it takes control over you. I know you won't understand that statement now but you will later.
What to expect: Most people experience scalp pain about a week after the first chemo round. The scalp can become very sensitive, tingle, itch and even be sore. The hair loss may begin within 14 days after the beginning of chemo. It will come out a little at first and then the hair loss will increase. Please be aware that when you wash your hair when you are in the shower, you will become very much aware of the hair loss.
What to do: Once the hair loss increases, the hair will be everywhere. I used a lint roller to get the hair off of me, my clothes and my pillow and bed. This is the time when most decide to cut the hair short or have it cut very very close to the scalp. Just remember the decision is up to you as to how much to cut because it is a very emotional time. No matter what you do, just remember you are still beautiful now matter how much hair you have on your head. There are lots of options for head coverings--- hats, scarves, Buffs, wigs, etc. It's just a matter of personal choice. You can contact the American Cancer Society and attend a Look Good Feel Good session to get a make up session and can even get a free wig. Also the TLC catalogue is a great source for headcovers, wigs, etc.
There is a chemo board thread called Hair, Hair, Hair that can also be a great support and resource for you.
community.breastcancer.org/for...
The rest of the hair: Loss of the eyebrows, eye lashes, leg and arm hair and down south can also occur. Sometimes it occurs during the chemotherapy or after the completion of chemotherapy.
My short hair story:I opted to cut my short bob to a very very short boy haircut about 2 1/2 weeks after my first treatment because I got so annoyed with the hair everywhere. I was the one who took control and made five little ponytails of the longest sections of my bob and clipped those ponytails off myself. It was a very liberating experience for me since I took control and did the cutting myself. My husband used his trusty electric clippers with a 1 inch guard to clean up the sides and back so I now had a cute short boy pixie cut. I opted not to shave my head and glad I did not. At the time of my 4th round of chemo, I have a thin veil of hair with stubs growing. I'm glad that I did not shave it since some of the gals on one of the chemo threads I'm on wish that they had not shaved their heads. It was my decision before I started to have to not shave my head close because I wanted to see if the chemo would take out all of my hair and felt that the transition from having waist length hair in February 2012 to being bald by May 2012 would be too much for me.
I'm not 10 months PFC and my hair has returned evenly. I haven't had to have it trimmed/cut since I had that pixie cut over a year ago. It is now 3 1/2 inches long and little wavy... no chemo curls though. The eyebrows returned and never fell out. My bottom eyelashes which fell out during chemo all have returned. My top eyelashes never fell out. I have to admit there are days that I do miss rubbing my head with the minimal hair. I always found it very comforting.
Wishing each of you the best!!! You can do this.... because you are each stronger than you know!!!!
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Thanks Melrose - lots of really good information! I did use Claritan for 4 days after my Neulasta shot. The first two days after I had weird muscle/bone pain but nothing terrible, I don't know if it was the Claratin or whether I would have even had them.
Netter - looked at your pictures of your shave day. They are awesome!
Ocean and Rain - haven't heard anything from either of you. How are you doing?
Alibeths - don't know what the steroid is in the transfusion, I was wondering that myself.
Patty smiles - thanks for tips on icing!
Talk to you later -
Hi Everyone,
I'm doing pretty well. Might even venture out of the house. Yesterday was devoted to dealing with my constipation issue but I'm all back on track as of now with the help of Sennosides. Continuing lots of fluid intake and my prunes.
Interesting re: motion/sea sickness and tough time with nausea. Not the case here. I've never been troubled by any sort of motion sickness but got hit hard with cycle 1 of my chemo. Sometimes I think this Big C is just radomly cruel to us all in different ways at different times.
Netter - I sent a friend request, I'm Kitchen Salli. I'd welcome any of you ladies to Facebook if you'd like. I have a food blog and post lots of healthy food pics, recipes and happy stuff.
Melrose & Pattysmiles - thank you for the valuable insight.
There are a few of you starting today - sending best of luck wishes your way.
Morning coffee is tasting real good today, I like that.
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Well, here we are on Day 3 after chemo (do you start counting on the day of session or the next day? Just the kind of details I get hung up on...lol!).
Day of infusion: Monday-Emend in IV.
So far: minor nausea yesterday: took Zofran & Ativan during day, Phenergan PM. Ate Activia & prunes-no constipation so far. Felt bruised around rib cage last night...assuming Neulasta. Taking Claritin again today.
We were able to go to the Rodeo last night to watch my 8 yo daughter ride in Grand Entry. Thankful to have made that! Today, I really slept in. Up and at 'em, getting laundry going. I feel a need to bore you with minor details as those are the things I was concerned about before chemo. Just being able to get out of the house, I am SO grateful for!
Those of you starting today: I'd say prepare (not expect) for the worst & be grateful for the little things.
We can do it, ONE DAY AT A TIME! -
I am also curious if anyone worked through their chemo treatments. my onc made it sound like I could come in at lunch, get my treatment and get back to work. By day 2-3 I'd be tired and worn down so may want to plan on a Chemo Thursday for treatments. Does this sound reasonable to anyone? I'm trying to figure out if she's blowing sunshine up my butt!!
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Melrosemelrose - I will be starting my first chemo on 6/24 and find your post very helpful, thank you.
Everyone - I'd like to read about your experiences with ports, specifically if anyone has had the port put it the same morning as the first chemo. This is what I was offered but the Mayo clinic website says to wait for a week between procedures due to possibility of infection... Any suggestions? Thanks!! -
Dyvgrl-everyone reacts differently to chemo so it is hard to say. It is really not fair to compare yourself with others. You need to do what feels right for you. Your treatment will last longer than just a lunch time.
When I did my chemo in 2009, I kept working through all the treatments. I did Chemo on Thursday-usually went back to work after I was done that day. Then Friday, I would work the whole day except for going in for the Neulasta shot. I spent the weekend resting and was ready to be back at work on Monday. My cancer center is only about 10 minutes from where I work so that makes this pretty easy for me. I also have a desk job so I do not do anything really strenuous on a daily basis. I was really tired by the time I got home and would take a nap for short while and then go out for a long walk. Walking a couple of miles daily actually made me feel better.
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Had my first chemo yesterday - I'm 51 with triple negative. I came home and slept for about 24 hours straight. I've noticed today that my face is red and swollen. Tomorrow I have a nurse coming out to give me a needle which i will receive after each chemo treatment - the very expensive neupogen! Anyone else in my age group with this cancer? I understand it's not very common for those of us with lilly white skin! I'm scared. still haven't cried yet
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Alibeth
I Started decatron today took 2 so far I've got a lot of energy and extremely hot. I hope it doesn't keep me up tonight I'm going to try taking benadryl before I turn in.
Tiffany -
Getting really nervous about tomorrow. I was going to ask if any of you decided to cut or shave off your hair before it started coming out. That's been a really upsetting part of this for me. Also I'm in Mobile, AL and was wondering because its so hot here if head scarfs or covers would be better than a wig.
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Dvygrl,
I couldn't get a Thursday at my infusion center. It's their "busiest day". Lol, gee I wonder why!
I think it can be different for different people. For me first round of chemo Day 1 (infusion day) I felt fine, same for day 2 and 3, then I was very tired day 4,5
2nd treatment I was tired on day 3,4
And by tired I mean I took a two hour nap.
I did find that the more I got up and did the less tired I would tend to be....seems contradicting but I had read that on here, get up and move.
I agree that the infusion is "long" my first was slotted for 3 hours, it took 4. I don't know what your concoction is supposed to be, it would determine your length of time. I would recommend you call your doctor /nurses to ask how long you might be there for.
Additionally, there is lab work to check you blood, some get it done on the day of their infusion and have to await lab reports before starting chemo. Mine is done the day before, and the results are there when I get there.
You never know how you might feel...one day at a time.
Pat -
Well it looks like I won't be starting chemo until July, I couldn't get into the oncologist until June 26, I just want to get the show on the road! I'm not sure how long it takes to actually start chemo once you get your treatment plan, I know I will be getting a port put in, so there is more time going by. I will still be following all of you to see how your treaments are going. I did just get my hair cut and colored yesterday probably for the last time in awhile.
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Dyvgrl-Yes... it is possible to work while having chemo. I know many women that were able to work and wanted to work and needed to work. There were days that they didn't feel great. You just need to listen to your body---- rest when you are fatigued and be easy on yourself and try to eat well and get good sleep. The main reason why you may not want to go back to work after receiving the chemo is that some of the IV drugs given to you may make you very sleepy and tired. The other thing is that the actual time you spend at the infusion center is longer than you would think because of lab work, port flushing, onco appt etc. so you may not have time to go to work after the chemo anyway.
It also depends upon what chemo regimen you have. With Cytoxan/Taxotere, I felt fine 36-48 hours after receiving my chemo. I had chemo on Tuesdays.... felt fine on Wednesday and Thursday.... felt the downhill slide on Friday.... rested Saturday and Sunday and felt fine on Monday. With A/C, the side effect onset may be sooner. No matter regimen you have, be easy on yourself and take good care of yourself. Keep moving. The reason for the walking and exercising is to help your body produce new blood cells. That's why you need to try to get out everyday and not stay stuck on the couch.
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Wow Kitchen Salli!!!!! Those meals look wonderful!!!! Can't wait to try some of them! Lorili, I am triple negative. Just found out about it when I went for my 1st infusion and haven't changed my dx yet. Hope to learn more at my next infusion.
Melrose and Patty, Keep your thoughts coming. Such good advice!!!
TRM & Tasharka just said prayers especially for you. Just remember.............God is holding you and he won't drop you!
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NisaVilla - I got my port put in a week before my infusion. I personally wouldn't recommend getting it done the morning of chemo. It is quite sensitive there after putting one in. Any one else have different thoughts?
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Hi,
I will be starting chemo on June 20th. I've been reading through your posts and there are some great tips! I have copied/pasted them in my online notebook.. Netter- I sent you a friend request on facebook..would love to hear about some great meals! As soon as I heard I had BC , I immediately purchased a juicer..lol..I felt like going out and grazing in the yard..GREEN GREEN! lol
I have a question..I had my port put in yesterday. Everyone had said..Oh its nothing, you will be a little sore...I have hard horrible pain with mine..down my arm and especially at sight. My surgeon presc me lortabs ( I had finally came off them from my MX..sigh) but they only have down to a dull roar. Also getting up and down out of bed is very painful. I don't sleep on that side, but its like when I had my MX..when I'd get up felt like bear was clawing down my whole site..now feel that in this....Is this normal? How long does it last? I am so tired of pain!
Oh!!! One more question- I had talked to the chemo nurse about ice packs/peas..she had never heard of them but grasped the concept. She said since I was only having 4 rounds that I probaly wouldn't have issue with fingers/toes. What do ya'll think?
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My port hurt! And no showers for a week??!!! It's still sore. In hoping it gets better. Good luck!
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ckmoss--- As anyone will tell you, no one knows how your body will react to the chemo. If you are wondering what the nail damage can look like.... here is a link: http://breastcancer.about.com/od/lifeduringtreatment/tp/fingernail_disorders.htm . I have a gal pal that had 4 rounds of Cytoxan/Taxotere and did not ice. She fortunately did not have any major nail damage. If you want to try it, then do so. The lifting and nail discoloration and possibility of developing fungus under the nails and associated pain is always possible. I did it because I felt the inconvenience of icing far outweighed what I would have to deal with if I did have nail issues. FYI: Some US infusion centers automatically have ice mitts and icing for their chemo patients. It is standard in Canada to have the patients ice their hands. Not all infusion staff/onco know about the icing. My onco suggested that I ice my nails and use Sally Hansen Hard As Nails Clear nailpolish. I had also read about the icing and nail polish here on some of the prior chemo threads.
Port pain--- I was warned by my breast surgeon prior to my UMX and port installation that that port would hurt like the dickens and would be sore for at least 2 weeks. Yes.... he was right and I was glad he told me about the port pain. The pain is partially from how the port is placed on a muscle. That port installation pain will get better. Hang in there!!!!
Alibeths- It's camp style baths for you for a little while. Hope you feel better soon and the port pain subsides!!!
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