Starting Chemo in September?? where are you ladies

I'm new.  I start chemo on Thurs 13th Sept.  I've had my hair cut short as advised by the care team at the hospital.  (I'm starting with FEC.)  Has anyone tried the Paxman Cooler to help prevent hairloss?  Does it work?  I've heared it is v uncomfortable/painful.  I'll be back at the weekend hopefully.

I'm Grade 3 Stage 2.  Tumour 3.2cm with 7 lymph nodes out of 12 removed affected.  Removed 6weeks ago.   

Hi ladies,

I'm from the chemosabe march cruisers.  Finished my chemo about 10 weeks ago. (Taxotere, Adriamyacin, Cytoxin) or TAC.  Your questions and concerns are valid ones, but don't be so terrified.  I actually breezed through chemo with little side effects.

Emend is not given too often these days although it's one of the newest of the chemo drugs for anti-nausea.  Most insurance companies will not cover the cost of it since it's the most expensive.  Decadron will do just as well and is covered in almost all cases.

We were all terrified the first time in the chair, but I had no problems whatsoever.  Made a lot of nice friends there as well and we passed out jello and munchies to all the others around us.  We always had our own little party, and took an ice chest with lunch and drinks. You can get up and walk around and to and from the bathroom as well.  You just unplug and your pumps are battery operated too.  We even went outside sometimes for an hour or so.

Take a blanket if you want to sleep although most centers have those as well.

Here are a bunch of great tips and if you start on them right away you can curb some of the problems you'll encounter after chemo starts.

Get started brushing your teeth with Biotene Toothpaste as well as using Biotene Mouthwash in place of your regular toothpaste.  It will keep you from getting the mouth sores so many before us have gotten.  If you do get mouth sores, have the onc write you a script for Magic Mouthwash.  I say prevention is worth a pound of cure.

Stock up on Senekot.  The first few days after chemo you will usually be constipated.  If you just take one every night before bed you won't have a problem.

Stock up on Emodium.  Usually after the constipation is over you will follow with diaharrea.  The Emodium will work wonders for most, but those who can't control it have your onc. give you a script for Lotrimin.  Also yogurt with active cultures is a big help. Just one a day is enough.

Be prepared for your hair loss.  Most of us never knew that when the hair would start to thin it would hurt.  That's the time you want to do a final buzz.  Besides it keeps you from shedding like a dog everywhere you go.

Most of us don't recommend wigs unless you absolutely have to have one.  They're scratchy, itchy and hot.  Scarves and cool hats are much more comfortable for going out.  Ebay is a good source for scarf lots if you need some.

Be prepared for weight gain.  Yes I said weight gain.  The steroids you'll be taking for the anti-neasua will work wonders but not without it's price.  Expect anywhere from 20-50 lbs before chemo is over.  If you're one of the few who doesn't gain that consider yourself one of the lucky few.

Expect lots and lots of sleepless nights.  Have the onc. write you a script for Ambien.  Most of you are probably already experiencing lack of sleep even before chemo; it just gets worse.

Don't be afraid of all of the medications you'll be taking.  It doesn't last forever and all of them serve their purpose.

Be prepared for metallic tasting drinks.  Some say flavored waters work well although one time it will and the next time something else will work better.  Drink at least 64oz of liquids per day if you possibly can.  It will help flush the chemo faster and you don't want to encounter bladder or kidney problems. That includes, jello and any liquids you drink, not just water.

Don't be afraid of your port hurting when they insert into it for chemo.  I never had mine sprayed or used a cream and never had it hurt once.  The nurses are experts in doing it.  Some people complain they can see theirs more than other people.  Consider yourself lucky as they say the closer they are to the surface the less problems.

Taxotere and Taxol are notorious for causing water retention or nails turning dark.  Never happened to me and some say they put their hands in ice water during chemo to prevent it.  It's your call.

I can tell you this.  When I did my chemo I was petrified the first time.  But I only had a bad bout with diaharrea once until I found out the yogurt was my cure.  Other than that I had a little fatique once in a while and that was it.  Can't say that's what will happen to you, but know it's possible if you don't dwell on it all the time.

Hope some of this will help you ladies.

Good luck,

Angel

Hi everybody...well, I slept for 7 hours last night.  I was able to run afew errands and get my neulasta shot yesterday.  I really felt the fatigue though.  Today I've had a lot of nausea and flu like symptoms.  Its tolerable but its rather miserable at the same time.  Hope it starts to get better as the days go on.  I had first tx Monday and I think (lol) today is Wednesady.  Def have chemo brain.  I write everything down; especially what times I'm taking my different pills and my fluid intake.  But the sun is shining and although I don't feel so good, I'm not depressed.  The lady sitting next to me in chemo on monday called me last night to visit.  She's older than me (I'm 34) but she's having the same tx as me, just a few tx ahead of me.  She didn't get the nausea I'm getting.  Well, hope everyone else is making it. 

Hello everyone. I was diagnosed in Dec 2006, surgery in jan, Chemo started in Feb and just finished rads in Aug. I would be happy to answer any questions, feel free to PM me.



Just had my port out and while it didn't really hurt, I was always aware that it was there. More mentally than physically. But yes, it will stop hurting soon.



Be cautious using the EMLA cream. A woman going to my onc. used it and when they accessed her port the needle was not all the way in and some of the chemo leaked into her chest. Because of the EMLA she did not feel it. My onc did not allow its use and wanted you to be able to tell the nurse if you felt the fluid going in or it hurt. The needle stick does hurt a bit but it is quite brief.



Ovaries come out as someone said because of the link between breast cancer and ovarian cancer. Ovarian cancer usually does not have any symptoms until it is far long. Many woman have the BRCA1 and 2 testing done and based on the results make that decision. Mine was negative and so I decided not to have my ovaries out.



I did not do a study because I wanted to do dose dense treatment. But many are out there and you can even choose your onc based on what studies are available in their office.



Other Suggestions:

Take your nausea medication exactly as prescribed such as the Emend. If your medication is ineffective call, many options are out there

Avoid dehydration it will make you feel even more nauseated. I went in for IV fluids after each AC treatment

Avoid reading too much. You can make yourself crazy with all the information and trying to learn it all. But at the same time be an informed patient!

I had a hard time concentrating during chemo and found the time went faster when I had someone go with me and we chatted. Couldn't really read well

I was nervous too and took Ativan. It is also great for nausea and insomnia

Let people help you. I am not good at that but people want to do something. Let them!

I had a hard time taking time off work. Thought I could do it all. But I felt so much better when I finally went on leave and I could not worry about being up all night from the decadron and then going to work.

These boards were a great source of information for me, better than the drs office.



You really can do this!!!!

K.

Hi there Paxton!

doing a little better today. I think my nausea is finally subsiding. But the burping and constipation are still kicking my butt! I have been really tired. Yesterday I hit my lowest point and told my husband that I will not voluntarily go back for more chemo....he just said "yeah right"...I know he's right, but I just felt so awful. I had some reflexology today at our breast cancer resource center, I think it helped.

I hope all the September gals are doing well! I'm seeing a light at the end of the tunnel for this treatment, yay!!

Hang in there

Marietta 

Sharon,

Have the onc prescribe some Pepsid prescription volume for the heartburn or burping.  I forgot that's a major side effect of chemo.

Also the headaches are common after Cytoxin.  Have them slow it down next time and you'll avoid the headaches.  I never had any se's from the Neulasta so don't wait for it to happen........lol  Just remember every treatment you do is one less you'll have to look forward to.  Day 3-7 are the common days for crashing.  Just take it easy and try not to overdo if you possibly can.

Angel

I nearly had to pull myself off the couch with a crowbar this morning.  The nausea has gotten less.  I don't have any bone pain from the neulasta but my muscles and skin are sore everywhere.  And I sleep like I'm in a coma.  I am keeping track of fluid intake so I don't think that's been a problem.  And I've kept on top of constipation.  But I sure hope it doesn't feel this way the whole two weeks or its gonna be tough to go back in for the next tx. 

For those of you who haven't had your 1st tx yet, the actual tx was a cake walk.  I cried some because of the feelings I'd built up about how awful I thought it would be.  But I didn't feel the drugs or get sick while sitting there.  It was more boring just having to sit for 2 hours.  The sick feeling came about 4 hours later for me.  But the lady next to me has the same tx and doesn't get the nausea like I do so everyone is different. 

Good luck Everybody!! 

paxton, I felt that way over the weekend. I am finally feeling better today, yay!! I was glad to see your post. I bet you'll be feeling better by the weekend.

Lots of good energy you way!

Marietta

Sharon: I sent you a personal email, so check your mailbox. 

Hi Paxton,

sounds like you've got lots to keep you busy, that's great!

I ended up in the hospital overnight last night. Diahrhea left me severely dehydrated and I just could not pull it together. My oncologist came and met with me and we went over the changes we will make for my next chemo.  Now I just have to believe that the changes will work.

I hope you're feeling well today!!

Marietta 

marietta: I ended up in the hospital for 2 days with diarrhea as well.  We're changing some of my regime, too.  What did u do your first tx and what r u changing to?  Did they say what your diarrhea was from?  My onc didn't seem to know why but I've read places on here where others said after the constipation the first few days, diarrhea happens often after that.  I also got the mouth sores even though I've been rinsing with that Biotene mouthwash. 

I almost feel human today.  I ate some solid food and am able to be up and around.  For my next tx we're increasing the decadrin to the regular dose instead of the half dose (I was worried about the jitters), and using kytril.  I used amend, zofran, compazine and ativan last time but I'm not sure which will stay.  You'd think with all that, the nausea should have been more under control. 

I'd describe my first week of chemo like this....I felt like I was sewn into a sleeping bag and thrown out the back of a moving vehicle after a night of binge drinking. 

One down, three to go (well, then onto taxol and rad).

Well, nothing to do but keep positive and move forward.  Good luck to the rest as we get through this.  Next for me will be the hair loss. 

Hi Paxton,

Wow we are really sharing this experience in more ways than one, aren't we? I'm sorry you ended up in the hospital too. That dehyradtion is killer!

The biggest change we are going to make is adding Emend prior to treatment. Honestly, I can't rememember everything else my Onc said, he showed up before my husband got there, so my second set of ears was not there. Onc said they dose the tx based on age (I'm 43, considered young) and liver function, blah blah blah.  Prevously I had the ativan and compizene to begin with, then they added zofran after the first night when I sick every 30 minutes. I had decadron at the begining as well. 

I've really learned that I can handle just about anything, except nausea. it is really debilitating.  Being so constipated seems to add to the nausea, so now I have to take senokot every night, that should hopefully make a difference. 

Yesterday was a really good day. I ate and enjoyed my food. I am so thankful for that. I really thought I would never feel normal again.

Thanks to Karyll for good wishes as well. I do not know what a Muga scan is, let us know what it is and how it goes. Please don't let our posts scare you about chemo either. Everyone is different.

Hang in there Paxtion, I predict you will have a much better day today!

Marietta 

Paxton,

You are so correct on how chemo makes me feel.............LMAO

 Ladies your all a tx closer to the end of chemo, I start taxol next monday, a little apprehensive but gotta do it...........right?

Ladies if you are getting real sick on A/C tell your Onc, they can change the pre meds and give you better quality of life. Emend worked great for me and I know that Zofran makes me very sick after trial and error.

I hope your all feeling better!

Take care Charlene

Hi Marietta and thanks for checking in on me!  I just got back about two hours ago and so far, so good.  I am getting a tiny bit of queasiness but nothing intolerable at all. (And it could just be the lunch we ate at our local greasy spoon has not agreed with me ) I have been tidying up the house and I can tell I feel a bit tired, but the cancer center is an hour's drive one way and that tires me out on a normal day!

The ladies at the center are absolutely precious!  The nurse I had happened to be the wife of one of my former co-workers, and they both are just great folks.  So she took special care of me for that reason and I was not one bit scared.  She explained everything to me and even gave me written instructions and details so I would remember-- that is sure helpful for me!  I go back tomorrow for my Neulasta shot and I hope I feel good then too for the trip back over there. 

I hope you have recovered from your bout with dehydration-- I know that must have been really miserable for you.  And glad to hear you got some Zantac-- that stuff works wonders!  I have taken that for years for my acid reflux and thankfully they upped my dosage for the chemo months.

I wish you and everyone else here the best and will check in again soon.

Take care and many blessings to you!

Mary Jo

Hey Harley!

Thanks for writing!  And YAY for almost being finished with your tx!!!  I know you will be so happy when it's behind you!

I feel a lot better now-- I just had some more water (may have to sleep in the bathroom tonight ) and the quesiness went away.  Or maybe the Zantac just kicked in after that greasy spoon meal...

I'm wondering when the funny metallic taste sets in-- pretty soon or does it come later down the line with more tx?

I wish you the best for tx #3 tomorrow!  Please let us know how it goes.  And you will not get sick! Rest a lot and pamper yourself so you don't get too tired.  Are you getting to the beach any?  A comfy lounge chair and a good book out there under a big beach umbrella would sure do wonders for me!  

Hugs to you!

Mary Jo

Hi Paxton,

Glad to hear that you're ready for some solid foods, and the lasagna sounds yummy even at 9 p.m.!  I hope the venison and apricots do the trick-- let me know if it does because that sounds like a good strategy to me.  Tell me, do you harvest your own venison?  My husband and I bowhunt but I'm out of commission for this season .  We also process our own meat and it is the healthiest and tastiest of all red meats when processed and cooked properly!  The dried apricots sound wonderful-- thanks for the tip on that one.  I've heard raisins are good for boosting iron also.  And also, thanks for the tip about the digestive enzymes. Glad to hear the mouth sores have really improved too!  How much baking soda and salt and water do you use for rinsing?  You'd think I could figure out something that simple, but I am a flunky in the kitchen...

Good luck to you, Paxton, and I hope you start feeling much better very soon with the addition of some real food!  Please let us know how you are doing!

All good luck to all the ladies out there doing chemo!

Best wishes and hugs,

Mary Jo