For those starting chemo in June

PJB

Janie, so the Herceptin is an infusion? I guess I thought it was in pill form or something. You're in for such a long haul. But you seem like your spirits are pretty high. (except for that awful boss)

Had the soccer team pizza party today, went to see the Capitol Steps last night (political satire), so it's a pretty big weekend for me! What an exciting life I have.

Mary, Renee, things going well?

mary1220

Hi girls, I posted yesterday and was in a hurry and didn't check it and it's not here. I have no idea what I was going on about that time but I am sure more will come to me.My mouse is in bad shape and it takes rolling it in circles, cursing and and threatening to go get a new one as soon as I can get up and go get one to get it to go where I want. I keep forgetting to get one and I have been to Wally twice. My husband took it apart to clean the ball to see if that helped, well that never helps. Guess he forgot. Some day we will be able to use our computer like normal people again, I have forgotten how easy it use to be, before the round and round and cursing and banging on the desk. Trying to go back and redo one letter is tormenting. You can get to every letter except the one you want to change. I will get a mouse tomorrow, I hope or I wil;l go nuts. Yea I ain't going back. Had 4 kids lastnight. I am tired. We went shopping today.Tonight is just my hubby and me. Hes woodworking and I am here. Tomorrow is catch-up day. catch up on the laundry and house work. Can't wait for that.Maybe I will go shopping again. Well I better go I can hardly hold my eyes open. I get wore out by 8 or 9 p.m. guess its the rads. Later girls Hugs, Mary

janie44

Yes Paula, Herceptin is an infusion. The first one is 90 minutes and each one after that is 30 minutes. They are weekly for 52 weeks. If there is a reaction, it normally occurs with the lst one. The first one starts right after the Taxol. Rads should also begin around that time.

I guess I have nobody to blame but myself for my schedule. When I found out what I was facing with the stage 3, ER/PR negative, HER2 positive and grade threes, I purposely sought out the clinical trial and found one in JAX. I will do the rads and lst Herceptins there. They think they can find a trial closer for the remaining infusions after rads. I would still go back every 3 months or so for check-ups etc.

Weekends are the worst for side effects since my treatments are on Wednesdays. My hands and feet are very swollen today, and of course, there is the pain. At least maybe next weekend is the last for the bad effects. Herceptin is not supposed to have as many although some people have flu symptoms.

How is everybody else? Paula, were the Capitol Steps good? We plan to go to the dinner theatre again Wednesday after treatment since I have one more workshop to do Thursday. I finish chemo and my continuing ed hours (40 of em) in the same week. That calls for a celebration.

Hugs all around,

Janie

janie44

Mary, you and I were writing at the same time. Glad to hear you are ok and sassy as ever.

PJB

Janie, the Capitol Steps were hilarious. And tonight we went to a Japanese steakhouse where they do the fancy tricks while they fix your food. Big weekend for me. Back to usual tomorrow.

I'm going to go on South Beach to see if I can drop a few pounds, and hopefully it'll help otherwise healthwise, too. Once I get my rads over, I'm going to start walking on my lunch hour. (well, that's the plan) Right now, I don't get to work til nearly 11 and it's pretty much just a rush to get things done by 6.

Janie, I'm so happy you're at least almost done with the Taxol. Does the Herceptin carry many side effects?

So my one sister who we know had the cancer is skipping Tamox. She's Stage 1, Grade 1. Not me, I'll take advantage of whatever they have. I really worry about having the positive nodes (3). She and I were talking about how we're sick of talking about cancer when we talk to each other. We've been doing it for 6 months now, with seemingly no end in sight now. Blech. How I long for my life before all this crap.

Renee, hope all's well. Mary, PLEASE go to get a new mouse before you flip out and strangle your husband with the cord or something.

Later,
Paula

janie44

Good Morning All,

Paula, Herceptin usually does not have as many side effects, if any. It helps the immune system fight cancer by giving it an antibody that slows or stops the growth of cancer cells.

I copied the following from this site:

Forty percent have fever, chills, muscle aches, or nausea. These side effects generally become less severe after the first treatment. Other side effects, including low white or red blood cell counts, diarrhea, and infections, are seen in some women receiving Herceptin in combination with chemotherapy, but are rarely seen in women taking Herceptin alone.

Less commonly, Herceptin can damage the heart's ability to pump blood effectively. Rarely (about 5% of the time), the heart damage is bad enough that women experience stroke or life-threatening congestive heart failure—a condition in which the heart can't pump effectively. Slightly more often (about 7% of the time), Herceptin causes mild heart failure.

If I get off the steroids, I had thought of trying to lose a few pounds during rads, but then I remember something about weight change messing up the position of the markers.

I'm with you Paula. I am open to whatever is available to beat this. Then I feel like the rest is out of my hands.

Yes Mary, maybe you should get one of the cordless ones.

Later ladies (morning sickness just like being preggers).

Janie

PJB

Fantastic news! My 2nd sister's biopsy came back benign. Her doc's actually not convinced it is and plans to do a follow-up ultrasound in a couple weeks and maybe a core biopsy. But so far, so good.

So, I gotta go clean because that means mom will be here in a matter of days (she would have gone to my sister's if it was a bad biopsy), then my sister comes for thanksgiving. So much to do....


Oh, and by the way ,go see the Incredibles. It was a really fun movie, even for grown-ups.

Everyone feeling OK? Mary, mammo results OK?

mary1220

Hi girls, Well PJ you indeed have great news and you will be done in a couple days right? I almost went to the movies but with the 2 year old decided not to. We have Polar Express and Incredibles showing. Our show charges 3.50 but popcorn and drinks are 18.00 for three of us. We eat and take snacks now. I will get caught by the theater police and be hauled off to theater jail some day but I like to live on the edge.Gosh PJ a I am really happy about your sisters news. My daughters doing Thanksgiving again this year. Oh! She don't cook never has, She will make deviled eggs and thats her extent of cooking. She has a big family room and we have a big family with my kids and dad and sisters and brothers. What a mess. Her man will do turkey (smoked) and everyone will bring the rest. Mammo was fine. Janie and Renee hope you girls are feeling better, the farther you get from chemo.the better you feel. Hugs Mary

mary1220

Oh got a new mouse so my husband is safe for now. It does have a cord. He actually sugested a cordless and I being a bargain shopper opted for the corded for price. I didn't realize it could be used as a weapon but thanks girls its a great idea. Visions are dancing through my head as I type and my husband doesn't have a chance. It will look like he fell off the wheeled desk chair and got tangled up of course. Thanks again, mary

janie44

Great news PJ. Positive thoughts that it will continue to be good.

Taxol seems to be cumulative with each one worse than the last. Glad Wednesday is the last one. Should know what I'm doing after all my appointments.

Hope all feel well.

Hugs, Janie

mary1220

Heck Janie I thought you had your last one today. I was waiting to hear you were done. Oh well, one more. You are right they build up on you but a wk. and a half after last one and you will start feeling better.MUCH better. Two more days and you will be outta there girl. I am really happy for you, you are moving on up. I hope you don't get the lasting bone pain. I still sit for a while and I have to walk like eegor cause I can't stand up straight for a while. I need to see about some meds. for that but I will one of these days. My sinus is a mess from the cold weather but its been in the 50's so its not bad in the day but 30's at night burrr. I gotta get to work. I use to get $50.00 for Thanksgiving but guess what I get now? notta! I hope I don't have to work, notta....notta gonna ...Oh who the he%l am I kidding I will feel sorry for my boss and work Da*m I am a pushover! (I wish I was a bad a$s) PJ, Slow down on the housework, you will make the rest of us look bad. Hugs, Mary

PJB

OK, so I'm beginning to look like the female doctor chimp on Planet of the Apes. I've got this awful (luckily blonde for now) hair on my face! I guess I'll go out and get some face Nair this weekend.

One left...

Hope you all are great. Mary, you ARE a pushover. And I thought the economy was supposed to be getting better! Why no Thanksgiving extra?

Janie, almost through. I'm so happy for you. Renee, I hope you're enjoying your time after chemo.

janie44

Getting ready to hit the road. It was a long, hard work day. Appointments start at 7:00 a.m. tomorrow. I should know lots of stuff by tomorrow evening. Glad it's almost over (chemo). The red blotches on my hand are really gross. They match my receding nails.

Talk to you all later. Try to behave.

mary1220

PJ, the man I work for has a lot of money. He has 8 kids and all have an education ,well most. They don't work, they don't have to. Their mates don't have to work and some don't. That 50.00 is less in their pocket someday. Some rich people are really strange. I am so glad I was raised with love and appreciation of others and what I have. I am glad I don't have to kiss my dads butt or jump when he says jump just to have money.(granted its a llllooootttt of money but diginity can't be bought, well I guess it can but pride can't be bought,well how about self esteem? I guess I should be rich huh?) The daughter thinks I make too much money so I won't get a Thanksgiving bonus. Maybe she should of went to nursing school instead of learning chemistry. Ah, If I make a dollar its a dollar less for her someday. I guess thats how they keep their richness, taking advantage of others. Well; we will feed little Timmy fish for Thanksgiving because scrooge won't give us a turkey bonus boohoo. Good thing ol dad went fishing this year. maybe we can sell some fish and buy little timmy a new wooden leg? the old one is 5 inches too short and he never gets anywhere cause he walks around in circles. He tried to ride his bike and he rode around and around in circles. Gotta go girls, Hugs Mary Good Luck Janie

PJB

Janie, you're done! I'm done with rads. It's a good day. Now, if I can just get rid of the facial hair, I'll be cruising.

mary1220

CONGRADS PJB and Janie, You've come a long way babies. Hope the day is the best it can be for you both. Hugs and more hugs have a great one, Mary

janie44

Congratulations to everyone reaching a milestone!

The rads lady wants to let me rest up from chemo for at least 3 weeks and give me time to heal (drainage) before starting. She talked to the neuro guy because my tremor is really bad now. He is going to start me on meds one week prior to rads to try to stop me from shaking the whole time. She told me to bring the percoset with me for the simulation to alleviate the shoulder,neck,back pain. They will do a rads ct that day too. I now have lymphedema and have to go a a lymphedema clinic as well as a physical therapy clinic to strengthen the side with the tremor and lymphedema. The lst thing, rads-wise is set for Dec 13 and 15. I will get the rest of my schedule tomorrow. I think Herceptin still starts next week. That is the way it has always been in the clinical trial papers. The coordinator came in to formally tell me about new side effects for Taxol (on my last day) -- has to do with the liver and lungs. Also, I have several side effects and some of them were more pronounced when the doctors saw them (for once -- they have a way of disappearing when they are around). The red blotches are a rash from the Taxol. I was very swollen in the hands and feets. My lungs are somewhat congested and yada yada yada. I was so afraid they would pull me from the trial if they chose not to continue the Taxol. Dr. M says, this is the last one and we are going for it. I told Traci how to get to St. Lukes in case I pull one of my reaction numbers. I have a workshop tomorrow and it will probably be boring and painful. Hope the chairs are good.

Hugs, Janie

PJB

Boy, Janie, well at least they sound like they're at last getting on top of things. Sorry to hear about the lymphadema. You've just been through it all.

I'll post after I see the onc this afternoon. I"m gonna ask if I can wait a week to start Tamox, just to have a break from ANYTHING.

rlswkndr

I'm back from a very restfull few days at mom and dad's in Arkansas.
Ate way to much considering my taste isn't back 100% yet, but that chinese buffet place had so much to offer, I couldn't resist. I was disappointed my favorite macaroons didn't taste good yet!
It was so nice out for our car ride home, we stopped in St. Louis to enjoy the weather. We went to the Arch, and then had a burger at an outside cafe- can't do that here till spring!
Fortunately, my left hand is slowly getting better. It doesn't look gross anymore. Still a bit swollen and that annoying tingling numbness. It is getting stronger . My mom taught me how to crochet and that keeps the fingers moving.
Boy, lots happened here while I was away. Paula done with rads, Janie done with chemo, and Mary still has her husband (thanks to that new mouse)I love when you said' he cleaned the mouse ball!)
Janie- still praying for you.
Renee

mary1220

Renee, If you went through St Louie you musta went up I 55? If so you had to go through Springfield? Hey, never thought of my husband being a mouse ball cleaner. Glad you caught that. It sounds like a good career for him. Man all it does is rain although it has been warm. Can't gripe about that. Sure hope that hand gets better soon. From the sounds of your hand its no wonder we are da#n near brain dead from that chemo crap. Glad you had a good visit with your family. It takes a while to get the taste back but it gets back.Now I have the metal taste from rads. Its rare but thats me. Its not bad but sure didn't need it.Three wks. to go and I get 8 boosts so I start them after one more wk. or so. I am getting a little red so Dr. gave me some aqua-something. It doesn't hurt only if I take a hot shower. It just feels sunburnt a little. Ol Pj must be parting cause shes basted and baked and we are proud of you for making it all the way. Hugs gotta go, Mary

mary1220

Janie just saw your post and read it. I feel so bad for you and I hope you get better quick. Things should get better now that you are not getting that crap. You poor thing, Prayers are going your way, A big Hug Mary

PJB

Had my session with the onc. Talked about Tamoxifen. I'm waiting a week or so to start it so I can have a real break from medical crap. I'm also gonna take a baby aspirin every day, to forestall any clotting, etc.

Don't have to see him again for 3 months. He also said if I'm going to have problems with Tamox, it'll be during the first month, so to call if the flashes were too awful or I had (get this) trouble distinguising red from green, colorwise. Told me to get on the glutamine for my feet. There is a study out there of some drug developed to help soldiers survive nuclear atmospheres that they're testing for neuropathy, apparently. But he suggested I try the glutamine and see if that does it for me.

Told me to get my butt out and exercise (well, he didn't put it that way, but he was very adamant). He says you lose muscle mass during chemo and your metabolism slows. And, well, fat cells have something to do with estrogen production. So, I guess I'll get out there and exercise. He says it's the one thing I can really do (besides Tamox, I presume) to keep it from coming back.

Port stays in for a few more months.


Anyway, enough about me. Janie, Renee, hope the symptoms let up. Geez. What a ride we've all been on. Mary, you ready to take those kids to the SpongeBob movie?

janie44

I'm back home and so far so good. They called me from Mayo. The scheduler said she needed to make an appointment from 7:30 to 11:30 one day and asked about my convenience. I asked her what it was for and she said she really didn't know but it is in the cardio dept. So far, I have only had echoes. How long does a MUGA take? Maybe that's what it is. I have a bunch of stuff scheduled next Wednesday and it looks like Herceptin will begin that day. The onc is scheduled again. Wonder why. I have just been seeing him every 3 weeks. I just saw him yesterday.

Paula, watch out for the traffic lights. Mary, your husband might open up a whole new trade. Not too many mouse ball washers out there...and the mice are glad. And you are hot on Paula's heels getting through. You go girl. Renee, glad you are feeling better. Wow! Paula, do not have to go back for 3 months. You must feel like you've been freed from jail. Thanks all for the kind words and prayers. Hugs. Janie

PJB

I almost forgot to tell you my wonderful story. My husband got home after being gone a few hours today (he mostly works out of our house). He called me at work and asked me what I knew about the poinsettias? Poinsettias? I didn't know what he was talking about. Well, turns out someone planted poinsettias in my empty planters out in front of our house. They've been empty for months, since I never could really bring myself to take care of my flowers this summer.

Took some digging (garden humor) but found out it was a friend who thought I needed something beautiful to help me celebrate being done. Now, is that cool or what?

janie44

That is such a wonderful story PJ.

My feet are so tight and swollen today. One of my appointments is to fit me with elastic stockings. I hope they don't go all the way to my butt like some of them do.

Well, gotta get outta here. Have a good one girls.

rlswkndr

Yes, we did go thru Springfield on our journey. We should have stopped by!!
Have a busy weekend with my nieces bachlorette party- I'm the designated driver, then her shower on Sunday. I will stay at my sister's house so I don't have to drive back and forth, then visit with High school friends on Monday morning before heading home. It feels so good to get out and about again.
I am still a bit swollen. My ankles feel tight, and I know I need to get out and exercise more- just wish the rain would stop here.
Janie- You take care- those stockings sound interesting.
Mary and Paula- Hope everything continues on the right track!
Talk with you on Monday!
Renee

mary1220

PJ, The flower story is a sweet one. X-mas flowers too thats nice for the hollidays. I bet you feel great to be free. Renee, yes if I had known I could of met you in Springfield for eats or you could of came by for eats. We are 28 miles south of Spring.Sounds like an all out fun wk. end for you. Sure hope all the swelling and bad stuff go away pretty quick. You can get different lengths of the hose for circulation, most times they just need to go to knees. Do you keep your feet up a lot? That might help to prop them up. Have they tried water pills? just asking, I don't know what works for chemo swelling. well gotta go. I have 5 more regular rads. then 8 super blasts and I will be done. Hugs, Mary

janie44

I hope my stockings just go to the knees. I do not like the other kind. I had a pair I really liked once but lost one. I guess the dryer monster ate it like he does everything else.

Both arms are swollen today and the ankles. It is hard to type or write with a hand that is like a baseball mitt.

You all will be done for a while by the time I start.

Have a good weekend. I have nothing planned tomorrow and for me that is great. I plan to rest. My Mayo team couldn't believe the hours I work.

Warm Fuzzies,

Janie

mary1220

Hi girls, just checking in. Got a grandkid tonight and hes been playing on the puter all day. He loves to play games on it so I haven't been on. Been cleaning and running. I may go shopping tomorrow, my hubby and I and buy us a x-mas pres. together.We have no idea but we can look. Let me guess a nice table saw, drill press or maybe some chrome for the Harley. Gee; can't make up my mind. I told him years ago that I can buy myself a toaster, he buys me what I won't buy me, like jewelry. Hes good and gets my daughters help. I do buy myself a lot of jewelry but its my only weakness. Its the Hungarian gypsy in me.I like to travel too, I blame my genes. Hugs Mary

janie44

Let's see....I'm conjuring up a picture.....Zsa Zsa Mary wearing tons of jewelry, on the back of a Harley singing Cher's rendition of Gypsies, Tramps and Thieves.