anyone starting chemo in Nov 2005

LizM · February 2006

I also wanted to welcome Margorie to the group and Debbie, Sorry to hear you didn't get your treatment. Can't believe you were reprimanded for gaining a couple of pounds especially since they know that women usually gain a little weight during treatment.

kim825 · February 2006

Odalys, I am sorry the Taxotere is not being "easy". None of this is easy. I am feeling better. Definitely snapped out of this faster than the last treatment. I never lost all my hair, and now it seems like it is coming back. Still very very short buzz cut. Dh says I need a trim, LOL! My eyebrows and eyelashes are thinning out, but they are still there. The Taxotere is taking its toll on my nails, they are there but sore.
Lat56, good luck tomorrow with the bone scan and MRI. We will be thinking of you.
Debbie, I am sorry about your treatment being cancelled. I'd be pissed if my dr. yelled at me because I gained 2.5lbs, esp. since you lost at the beginning.
Margerie, I am sorry you had to join our group, but you will be glad you did.
Liz, cool a Rolling Stones concert. Sounds like a great night.
Hope you all have a great weekend. GO STEELERS!!!

Kim

spirit3kd · February 2006

Hi Debbie~ I think you are doing well....gaining a little weight isn't that big of a deal. Especially since you were so sick and couldn't eat for a while there.

I am glad you at least have some appetite back and I wouldn't even listen to him/her. My doctor told me that when you start losing weight is when you are really in trouble......you eat up and don't worry.

Dr. Kaye.....LOL

Mary-Lou · February 2006

Odalys, if you want to do ww on line just go to the web site. I have a hard time doing that way, I like the classes and going to the message boards to chat. You can call 1-800-651-6000 and put in your zip code, it will tell you where the nearest meeting is.

Believe me, you will feel wonderful after just 2 weeks. And it isn't hard. Nothing is off limits. You just can't have everything all in the same day. And you have a lot to eat.

AnnaM · February 2006

Welcome, Margery. Sorry you had to join, but welcome all the same. You and I have a similar routine: I'm in week 2 of 12 weekly Taxol/Herceptins right now. Lucky 951 and Nancy are also getting Herceptin. I got the A/C every three weeks, that's the only difference. Also, I'm not yet sure about the radiation. I was told no (had bilateral), but I'm reading yes (two positive of two nodes taken on one side).

If you are checking in, Kaye, I have lots of hugs for you.

Good luck with Taxol#2 on Saturday, Liz! I share your uncertainty about the radiation.

Yes, Odalys, my daughter is a delight to me now. Never a sharer of girlie stuff, though. She's always been more of an "alternative" type. She married a very sweet more "regular" type last year and they are starting to think of babies. Twenty-seven. An artist. She is currently becoming a powerhouse bookbinder in France. This week she is studying with a monk at a monastery in Belgium and says she works 14 hours a day and it feels like two hours. She brings total joy and laughter into my day every time she calls me with an update. If I had not been diagnosed with breastcancer last June I would have spent part of this year with her in France. The loss is offset by the realization that she is learning so much about coping with difficulties on her own, things I would probaby have tried to make easier for her.

Letting go....

Debbie, so sorry to hear about your setback, but it is a short one, right? I can't believe your dr. would give you a hard time about some pounds! Aren't you doing your best to deal with an onslaught to your body every single day? I really don't get that one.

I used to bemoan the fact that I had very sparse and light eyebrows. Now that they are just about non-existant (2 hairs on the left, two or three on the right), it doesn't bother me any more. I realize my eyes stand out more.

I do have a lot of peach fuzz all over my head (no, not peach in color) and wonder what that's all about.

Mary Lou, you inspired me to go to a Weight Watchers meeting in my town yesterday. I am actually 17 pounds over my ideal weight, and I'm not going to diet or anything like that, but just knowing that I can gain some control right now is worth it. I realize I don't need to cut back in any way, just to make sure I am getting the good stuff I need (fruits and vegs, water, good fats, milk products in moderation). Yep, feeling in control is what I want right now.

I hope you all have a good weekend. Some of my quilting buddies are taking me on an outing on Sunday, so I'll miss the Superbowl ads. Ah well, my husband will keep me informed, I guess.

Anna

Mary-Lou · February 2006

Good for you Anne, Weight Watchers is a life style and not a diet. It is about being aware of what you put in your mouth. And also being aware of the feelings that make you want to eat.

By the time all this is behind you, you will be a totally new you!

I think it is so fun, and I always feel so happy after weigh in....Sometimes you have a gain and don't know why, it could be just to much salt and no water....just don't stress..it all works out.

Try to wear the same weight of clothes every week. Clothes really make a difference. I even weighted one night in my very light weight shoes, then weighted with out them, they weighted 2 lbs. I couldn't believe it.

I'm feeling a little better today, just tired still. My oldest son and family are coming into town for the week end. Glad that I will be spending some time with them.

Hope all of you are doing well this week.

Love ML

Mary-Lou · February 2006

Almost forgot, welcome Margery. Sorry to have to meet you here, but it is the place you can feel free to come at anytime day or night.

Margerie · February 2006

Thanks everyone for being so nice.

Maybe you can help me with my current eyebrow trouble.

I have fair skin and pretty big, dark brows. They are thinning, about half gone. I have tried to pencil them in, but they just look gross. The pencils are blobby. Tried using brown eyeshadow, but that doesn't look right either.

Is there a brand of eye pencil or powder that you have used and are happy with? What did all those people draw their eyebrows in with a few years ago when it was popular? I am not getting good results, and when the brows are gone (9 more weeks of Taxol)I don't want to look/ feel like a freak. Thanks!

Mary-Lou · February 2006

Margery ,

You may want to sign up for the look good feel good class. Ask about it where you get your treatments. They give you free make up and tips. I have signed up , but not yet gone.

Good luck

ML

lana17775 · February 2006

Here's the website for it:
http://www.lookgoodfeelbetter.org/
and the phone number: 800-395-LOOK - they'll both get you to local information.
I signed up for the next workshop, but its not til March, a couple days before my last Taxol treatment!
Good luck!
Lana

wenblown · February 2006

Well hello everyone!!

It has been awhile since I have checked in. Alot has happened since last I posted. I have had my 2nd taxol Jan 26, Thursday. On Friday, my 4 yr old had blood in his urine. My husband took him to Dr. and tested for bladder infect. Test was neg, but culture had to grow overnight. Called dr on Sat. culture was neg. Doc said had to go to Children's Mercy downtown (Big Peds hospital) I went to get up and take shower, my arm started turning blue as well as half my chest (port side). I called KU cancer center, said I had to go to ER. So my DH took my son to ER @ Childrens Mercy and my grandmother took me to KU ER. IT WAS CRAZY...Anyway, son is OK, he has Nephritis Syndrome(SP). BUT, because my WBC was 57,000, they kept me. Turns out I have a large blood clot. About 7-8 inches long in a vein (luckily). It starts at my neck and goes to the top of my arm. I have been getting lovenyx shots every day for an entire week and have been taking coumadin every day. I was in the hospital from Sat to Monday. It was very scary. The clot is from the port, doc thinks. The high WBC was from the Neulasta shot. The incredible thing was I met this wonderful woman during my stay on the Onc floor. She had brain cancer. She was truly inspiring. On Monday, when I was being released, her onc doc told her she was in her final stages of life. She still had such kind and inspiring things to say to me. I only cried...Unfortunately, I read the paper today (Sunday) and found out she had passed away Friday. I felt sad, yet glad to have gotten to know her in such a short time.

I hope this does not make anyone upset. I truly feel God put me in the hospital to meet this person and be touched by her:)

Just a few more things: I went to a Look Good Feel Better. I got some great makeup and tips. They did give me a good eye brow pencil. My eyebrows are terribly thin. My eyelashes look worse...BUT my hair on my head is thick stubble and my leg hair is coming back.

Hope everyone is doing well. My 3rd taxol is this Thursday. My onc doc said he will no longer use the port because of the blood clot. Has anyone been given the taxol in the vein direct? Had any problems?

Last, someone asked me about my reconstruction. I have no idea. I go to the plastic surgeon tomorrow. Anyone have any great suggestions???

I will try to keep better touch. Reading all the posts seem to make me very happy.

OH - I almost forgot - Mary Lou: Did WW ask if you had completed treatment or did you need a Doc note to start WW?? I have been waiting to join until my last chemo, but want to start ASAP. I lost 25 lbs 4 years ago doing it. It is a great program.

Thanks and take care,
Wendy

Anonymous · February 2006

Welcome Margerie!!!
I want to say thanks to all of you for your supportive words-I knew I could count on you to let me vent about my sucky doctor. I have already lost 1.5 of the pounds I "gained." In your face, Doc!!!! I have always thought he was kind of a wacko, but the doctor I saw in Chicago (she won a "Genius Grant," so I trust her completely) was the one who recommended him, and she has been giving input on my treatment. So I stick with him, no matter how weird he is, because I am oddly comforted that he collaborates with a "genius."
Wendy-tell me more about the blood clot in your port side. I have been having weird pains in my arm on the port side, and asked my onc. nurse on Thursday if that had to do with the port, and she said, "No...." and let her voice trail off like that was a weird question. Now I am wondering if I should push the issue more. It started a week ago today (Sunday). It gets really irritating at times.
Well, I have to go-Daniel just woke up. I swear, it is like he knows when I sit at the computer.
Pray that I get my treatment this week!!!!!! Best of luck to those who do get treatment this week!
Love and prayers, Debbie

Anonymous · February 2006

PS- Iwent to "Look Good, Feel Better," in November (before I lost any hair) but I have to say they are AWESOME, and it is a great time to meet other women going through what you are going through. I brought goodies, and we all ate and put on make up and had fun.
Bye!! Debbie

Mary-Lou · February 2006

Wendy, I was a member before my treatment so I still follow the plan as close as I can. It helps me to get enough good food...At times I can't eat as I should because the taste is awful.

As far as classes, I will return later when I get back to work...Money is tight and I have to get what we need, and not what we want these days. I'm not used to that at all.

But I know the program , and can do it for now on my own. I would do better if I did go to meetings. I like being with others that know what I'm going through. Just like here. Great support.

Margerie · February 2006

I did go to the Look Good Feel Better and got a lot of great makeup.. Unfortunately the consultant said she just watches us try it on. She was very nice, and I don't meant to complain, but no help! Anyway, there was one other patient. She was so fair she said she doesn't bother drawing in her brows. Oh well, I will ask my sis. I'm pretty sure she can help- I am pathetic in the make up department!

Wendy, I did not get a port and have had 3 weekly taxol + herceptin treatments without a problem. I didn't have a problem with the AC in the arm either. Just a little bruising where the iv was.

Debbie your doc's comments reminded me of my friend's OB who gave her a hard time for gaining 30lbs. during her pregnancy. He said she needed to look good for her husband and it wasn't fair for her to gain too much. This coming from a fat, sweaty, out of breath from smoking, middle- aged man.

I am about surviving this period in my life. I will get my act together weight-wise after chemo and rads. I just can't diet and kill myself exercising at this moment!

AnnaM · February 2006

Wendy, sorry to hear about the blood clot. Who knew that could happen? Still, I'm happy I have the port. I sure wouldn't be able to take the IV every week and that through a year of Herceptin. Techs used to tell me I had "bad veins." My appreciation of techs and nurses who blame the patient for their own lack of expertise is runninng low these days. Nowadays I view anything that keeps needles away from my arms as good. Especially in view of my LE risk (bilateral).

Debbie, I hope you get your treatment this week!

I go in for Taxol/Herceptin #3 today and then on for my four-month check-up with the breast surgeon. I know I'll be a sleeper all day, this time it'll be in the car (breast surgeon is 90 miles away, husband is driving, of course). I plan to take my very first Ativen tonight.

Good luck to all,

Anna

LizM · February 2006

Wendy, I have gotten all of my treatments through an IV in my veins (5 down, 3 to go) and have not had any problems. I go for my 2d Taxol today. Hope it goes as well as the first. Anyway, good luck to those getting treatment this week.

kim825 · February 2006

Good morning everyone. Good luck to everyone getting treatments today and this week. Debbie, I hope you get your treatment.
Wendy, good to see you. That must have been very scary for you with the blood clot in the port and your son's blood in the urine.
I was scheduled to go to a Look Good Feel Good program in January and wouldn't you believe it was the one day we had an ice storm. We haven't had much of a winter here in NEPA but the one day I wanted to do something for myself (finally) the kids wound up being home and the roads were horrible. I would have to drive 1 hour to the program. The next one around here is in March.
Hope you all have a great week.

(((hugs)))
Kim

Mary-Lou · February 2006

Hi everyone, I'm feeling a little nervous today. I have my first Taxol on Thursday. After the last Taxotere event, I just feel like I have no control.

I feel like my blood cells are low, they may not be, but I just feel like I'm not as strong as I should be.

I also feel very tired. Could just be a busy week end catching up with me. My oldest son was in with his family , so I didn't rest as much as I should have.

I really enjoyed his visit. Good luck to all who have treatment this week.....

ML

LizM · February 2006

Made it through my 2d Taxol (6 down, 2 to go). My white blood cell counts were 20,000 so they told me to skip the 5 at night and 5 in the morning dexadrone (sp) pills next treatment. They will only give it to me in the drip before the Taxol next time. My red blood cell counts were 11.7 (just below the minimum of 12) so I had to have the procrit shot after treatment. They want me to still get my neulasta shot tomorrow. If it is like last time I can expect to feel OK tomorrow but then Wed, Thurs, and Friday I will probably have a lot of body aches and pains. I made it through last time with only Advil. I refuse to take Oxycondone unless I absolutely need it and I didn't last time. Anyway, hope all went well for others who received treatment today.

c2et · February 2006

Hi to all and best to all having treatment this week.
Hello and welcome to Margery.
Mary Lou I hope your treatment goes well this Thursday.
Gosh, Wendy you've had a rough period. That must have been scary for both you and your son.
Debbie I'd be pretty upset if any of my docs made a comment like he did to you about my weight! What a jerk!
Liz I hope your Neulasta injection goes well. I've had Neupogene and thank goodness it was manageable with Extra Strength Tylenol.
Love to all.

kim825 · February 2006

Mary, we will be thinking of you on Thursday. I hope and pray your Taxol treatment goes much better than the Taxotere.
Liz, glad your treatment went well.

(((hugs,)))
Kim

Odalys · February 2006

Hi ladies,

Just dropping in to wish everyone a good day and best wishes for those receiving treatment this week. I'm enjoying my good days until they pump me up with Taxotere again this Friday (1 down 2 more to go). Take care ladies.

BTW- Are Kim and I the only ones receiving Taxotere?

Sending Love and Hugs your way!!!!!

Margerie · February 2006

I had round 4 out of 12 taxol/herceptin yesterday. Doing very well, even with adding radiation this week. Am thankful! Right when my nose stops watering, I know my next tx is around the corner.

Good luck to all and keep those spirits up!

lana17775 · February 2006

Hi Ladies-
Went for my 2nd Taxol treatment today and lo and behold, I have a small clot caused by the damn port! So now we have to get rid of the clot (coumadin and laudinin - not sure if that's right) before chemo can continue! AAAGGGGHH! I'm so aggravated -- like everyone else, I just want to get this done and on with life!
The silver lining is that at least I feel good - the first Taxol was not nearly as bad as the AC for me! So I can take advantage of this week (I hope that's all) 'off' and enjoy it!
Chins up!
Lana

AnnaM · February 2006

I had round 3 of 12 Taxol/Herceptin on Monday and asked the nurse if the swelling and discomfort I have been feeling for the past week under both arms and along my torso under one of my arms could be a side-effect of the chemo. She checked with the onc. and came back saying I should see my breast surgeon. Guess what, I happened to have an appointment for my 4-month check up with the breast surgeon that very afternoon. Perfect timing!

So I showed the breast surgeon the swelling under both my arms and along my torso and he said there was no swelling, it was in my mind.

I asked him how it could hurt so if it's in my mind and he said there was no swelling. He said maybe what I am feeling is an effect of the Taxol, maybe it's because I've put on 10 pounds since the surgery, maybe the nerves are waking up finally after 4 months of numbness.

But what I have under my arms looks like huge puffy rolls, and it sure wasn't there 10 days ago. And it hurts.

I know it wasn't there 10 days ago. I massage my mastectomy scars twice a day and see my body more than I ever have.

My husband thought I'd be happy to hear it wasn't "anything to worry about."

I just want not to feel like I've got a dustbuster wedged under each arm. I just want my doctor not to tell me it's not even there.

Has anyone had anything like this happen?

I guess I suspect it's lymphedema (I shudder at the thought) and that's where my life is headed now. I have an appointment to see a LE therapist next week and I'll try to hold on till then.

I'm just so down.

Anna

LAT56 · February 2006

Anna!!! I have been experiencing the same thing. Although my side doesn't look swollen, it feels like it is. I understand your dustbuster analogy! Plus I have been having ALOT of pain. I had a bone scan & MRI done last week, both with good results. My onc. didn't really offer any explanation - she said it could be side effects of Neulasta shots. I have been afraid to touch the surgery site until I had the results of those tests! (afraid of what I might find). I have found that massaging the area does help. I wish someone had told me about that before. Please keep me posted as to what you find out. (I also expect mine to be lymphedema.)
Best wishes to all.
LAT56

Odalys · February 2006

Anna and LAT56, I experienced similar pain after my first Taxotere. The pain and swelling feeling lasted for almost two weeks. But there was no swelling that anyone could see. I went to see my surgeon for FU visit last week and had similar experience. He told me no one had experienced that side effect. Unbelievable...

Mary Lou - Thanks for the info on WW. Good luck tomorrow. Keep us posted.

Wendy and Lana - Sorry to hear about the blood clot, sounds very serious. Glad to see they were caught before they could cause any other side effects.

Hugs...

Mary-Lou · February 2006

Hi girls, Anne sorry to hear you feel so down. (((HUGS))) I feel pain too, its all through my chest. And there is a lump in the cancer breast.

I see my surgeon on the 14th.... I'm still stressing about the Taxol tomorrow. At least there are only 2 more after this one. And he is putting me back on DD and Neulasta.

I hope my blood count is up....Also I have had a headache for 2 days. May be the stress, not sure. Just have not felt good since the hospital stay.

I am mad and want my LIFE BACK!!!!! Sick of being bald and no eye brows. I feel so vain, and I don't care. Money is at an all time low, and it just sucks.

I wanted to work, and I have had such brutal treatments etc, that I wouldn't be dependable anyway. (They said at work to just get well.)

Bills have just taken over the kitchen island I think. I don't even want to see what the mail brings anymore.

Do I sound bitter? Sorry for the vent, I could have it so much worse, but I'm just fed up with cancer. I think once I'm through with treatments and I have hair I will put this out of my mind and get on with life.

Sometimes I think if I see one more pink ribbon I will scream!

I think I will go and get in the jet tub and try to relax, I have to be at the cancer center at 9 am so I need to turn in early. The Onc said I will be there for about 4 hours...YUCK

Again, sorry for the vent. To all of you, my thoughts are always with you.

Special Kaye , hope all is well with you and you're feeling well these days.

God bless each and everyone of us as we go through this journey, amen.

ML

Odalys · February 2006

Anna, Mary Lou, and all the ladies who are feeling down, and discouraged...I understand how you feel. It's been a loooooooong journey. We've lost more than our hair in the process and it seems like forever before we feel normal again!!! Hang in there. Please trust God will give us the strength we need to go forward and together we can get through this!!!!!

Love and hugs...

anyone starting chemo in Nov 2005

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