anyone starting chemo in Nov 2005

Odalys

Good morning ladies,

Thanks for keeping me in your thoughts and prayers. I really felt the strong vibes yesterday when I went in for 1st treatment of Taxotere. At first, I could not stop crying and my hubby kept hugging me and telling me it would be okay. I prayed and prayed and thought of you all and pictured you shearing for me and then I felt stronger.

Got to tell you, it was a rough day. Son woke up with a cold and fever causing us to scramble around for a sitter. We got stuck in major traffic jam causing us to arrive late. And if this was not stressful enough, I was assigned to a nurse who was so unprofessional, lazy and just out right hostile. Can you belief she kept me waiting from 10:30 – 4:00 pm.? I ended up asking for another nurse and reporting her to administration. As it turns out, someone else reported her in the morning. As far as I’m concerned, she needs a major attitude adjustment to work with cancer patients. There was no way she was going to treat me! The new nurse was kind and caring. It was a very long day; we finally went home at 6:30 pm! Thank God we managed to get through it.

The whole treatment experience was not bad. I decided to follow doctor’s orders and place hands and feet on ice; though it would probably help hand/foot syndrome too. RN gave me gloves and covered feet with socks and plastic bags. I was able to tolerate the cold for about 30 minutes at a time. It was doable. Today I feel good, head clear and no nausea or queasy stomach. Yeah!!!!!!! Now I wait and see if on day 5-7 I get the pain crisis, hope not. Oh goodness… the Decadron is working; look at this long post. Sorry for being so long winded this morning.

Hope everyone has a good day, take care. Hugs…

Odalys

Oops…I forgot to answer the posts.



Nancy – How are the side effects of the Neulasta?



Liz – How is your cold? I will be thinking of you on Monday.



Debbie – Are you still having a tough time keeping track of all your medicines? I was at first, and hubby bought me a pill organizer at CVS pharmacy. It’s great; it includes each day of the week and four slots with time for the various dosages. I usually fill it up on Sundays and then I just have to worry about taking the pills. Now, I don’t have to worry about missing a dose.



Mary Lou – glad to see you’re doing better. When did the hot flashes start?



Grace – great to hear you’re done with your chemo. Hearing your doc say those words must have been very exciting. You did it!!!!! Thank God! You give us all hope. Good luck on your next part of the journey. I think I can speak for all the ladies on this board when I say we will continue to be here for you.



Rhonda – good to hear from you. How are you? I was wondering how you were doing since I had not seen you post in a while. There are a couple of us taking Taxotere this time around so we will be able to share experiences and help each other out. I decided to try soaking hands/feet in ice for the next three treatments in hope it will also help with the pain crisis and hand/foot syndrome. Time will tell.



Mary Lou – Hope you are getting some sleep? I agree Taxotere seems to be less stressing on the body as compared to AC; let’s hope it stays this way.



Kaye- Thanks for checking in, so great to hear you are feeling better. Good luck on the port removal. If you feel up to it, please let us know how it goes. Most likely we will all be removing ours one day soon. I wish I could send you some of this 80-90 degree weather your way. Hope the weather changes soon so you can enjoy your travels. You deserve it! Take care. God be with you always.



Anna – Good luck Today (Saturday). Just be yourself and go with the flow. I find that when I share myself with other women they tend to be very receptive and understanding. Some even express admiration for all I am going through and still manage to work and take care of my family. As for planning/participating in meetings, I find that keeping personal notes on important issues keeps me more focused and organize without having to rely on my memory. Monday will be a big day. Starting a new drug is unnerving. But you will get through it and will be able to start adjusting to the new side effects. Just remember how difficult it was to start the first AC treatment and look how far you’ve come. God be with you.



LynnZ – Hi, glad to hear from you. Congrats on finishing Chemo! Yeah, you did it too!!! You will be getting your hair back soon. BTW- Ativan also made me very sleepy and kept me in a fog for a day or two. I had a re-excision to clean margins and all went well. No side effects and/or pain, and best news of all cancer free margins!!! Are you having your port removed at the same time? They inserted mine at the same time and it saved me a trip to surgery, just a thought. I can relate to the whole insurance issue, that’s one of the reasons I decided to continue working. Plus it keeps me occupied on other things and less depressed, so far so good.



Wendy - I too feel anxious every time I have to go to a large meeting. This week I attended a very important meeting (I had been postponing it since late November)at another school to discuss a partnership with them and I was nervous and felt self conscious of the wig. I was less verbal than usual but was able to stay focused, participate and keep a clear head. After it was over, the administrators gave me very positive feed back and were impressed with my thought and ideas. This was a very liberating experience. Glad to be back.



Well… I think I’m caught up with all the posts. Have a great weekend. Love you all. Hugs…

Mary-Lou

Kaye, a trip sounds so good right now, wish you could pass by to see each one of us. You are welcome to make a stop here in Virginia anytime. The door is always open. Glad you are feeling better. My prayers are with you.

Lynn, glad you liked my web site. I love adding things as I go. I did get back on my weight watchers journey. Now that the A/C is over I feel so much better. I will be able to really eat better. Before there was just so much I could stand.

I got some much needed sleep last night, and have been cleaning all morning. I really feel like me today.

Anne, good to see you here. Please email when you have a chance. Mom was telling me about the quilts being given out in Loudoun. She was reading it from the Loudoun times.

I was telling her about Jane and she said wow what a small world it is. Also the lady in Texas that was getting the quilts to people is one of her friends from Master Gardeners in Leesburg.

Good work there. I'm a northern Va girl at heart.....

Debbie hope you are doing okay. And everyone else on this wonderful Saturday . At least it is warmer here, 52.

Love and hugs
ML

kim825

Hope everyone is having a good weekend. I am anticipating 5 Taxotere treatment on Wednesday. Took me a little longer to "snap out of it this time". Always tired and leg cramps just seemed to stay. I am so happy for you LynnZ and Grace. Done w/ chemo, how wonderful. So many of you are joining me w/ Taxotere. If I can be of any help to you just let me know.
Kaye, your trip sounds wonderful. We have had an unusual winter here in NEPA. Chilly, but in the 40's and 50's. We are usually in the 20 and 30's. We will see what happens in Feb.
Rhonda, good to hear from you.
Odalys, glad your first treatment went well.
MaryLou, glad you are feeling good and got some sleep.
Anna, good luck on Monday, we will be thinking of you.
Wendy, I am thinking of you for good BRCA results. I will be probably getting genetic testing for my kids sake and I have 1 sister and a bunch of cousins.

(((((hugs)))))
Kim

Mary-Lou

Odayls, missed your post somehow. I'm doing well on the Taxotere so far. I started to have really bad flashes about 2 weeks in . I already was having them a little at a time before the chemo. But these are like no reg hot flash. My face turns blood red!

Odalys

Mary Lou - Thanks for letting me know. I started having hot flashes last night (day 2 after Taxotere); would wake up every 2 to 3 hours with neck red and hot and head on fire. I poured cold water and hot flashes went away. Not too bad; so far manageable.



BTW- Nice web site. You look good both with and without hair!



Love and hugs to all.

Nancy-SanDiego

Good morning, Ladies. Its been ages since I caught up with all of you. Kaye, where you going, girl? We have a lot of the snow birds in SD right now and would love to see you.
Anna, good thoughts today and for all of you starting a new round of treatment.
I just finished A/C4 and got my first Neulasta last Monday. Funny, how I "sailed" through A/C and was able to manage the side effects and work, but one little Neulasta put me down for the count. Intense bone pain on Wedndesday (including ankles, jaw, ribs, etc.) and then 16 hours of non-stop muscle spasms in my lower back. Felt for all the world like labor pains. Finally enough Vicodin and Ativan, along with hot showers and heating pad, helped, but felt totally wiped out. Now at day 8 and still sore in my hips and back. I'm supposed to have this weekly for 12 weeks? Yikes!! Any advice? Today is echocardiogram to get ready for Herceptin and Taxol starting 2/2.
Lynn, it just isn't right that in addition to everything else we've been handed, we also have to worry about insurance covereage, job protection, etc. We have so much more working for us now, legally, but its still a pain.
Back to bed. I'm thinking of each and every one of you and wishing you the best of health.

Nancy

kim825

Good Morning everyone. Nancy good to see you, good luck with the echo today. I know what you mean about the Neulasta shot. Knocks me out too. The bone and muscle pain at times in so painful. I really couldn't imagine getting one weekly.
Good luck today Anna.
Have a great week everyone.
Kim

LizM

Just finished my first DD Taxol. It was a very long day but uneventful which is good. It's nice not to have to take the nasua meds. I guess I will wait for any pain to start before I take any pain meds. I plan on taking only Advil but they gave me a prescription today for Oxycondin which my oncologist said I may need at night. I will keep you all posted. Hope treatment goes well for those receiving it this week.

kim825

Liz, glad it was an uneventful day for you. One Taxol down. Hope you get a good night sleep tonight.

Kim

AnnaM

Hi my November angels! Thank you for your encouragement yet again. It's so heartwarming coming back here after a few days away and in the throes of fear of the unknown. I appreciate you all so much!



Please bear with me for I am again (for the second time, this happened after A/C #2, I think) a very hyper Decadron witch. My first Taxol/Herceptin went okay, but here I am and it doesn't look like I'll be sleepy anytime soon. As I said on the Worried About Taxol thread, maybe this means my Christmas decorations will get taken down tomorrow?



The Saturday session with interested students went well and I wore the wig. My three students from last year came and gave a really good talk and went on and on about how great I looked and how much they loved what I had done with my hair. I wish we had been alone so I could have told them what was really on top of my head (and in my head, too), but with 30 potential participants sitting there it simply wasn't the time. In some ways I feel dishonest vis à vis the three, and I can't believe anyone could look at this wig in daylight and not know it's an imposter-do, so of course I wonder if they know I'm dishonest, too.



Weird thinking, huh?



Odalys, I am so sorry to hear you had such a bad experience with that nurse. That's awful to be kept waiting so long, and you with other concerns at home! My only bad nurse encounter during this entire experience up to now was on my first day in the hospital after the bilateral mastectomy with DIEP reconstruction. With a flap reconstruction they are supposed to check on the blood flow to your flaps every hour at first, then every so and so many hours. This nurse left me alone for 9 hours straight! My husband kept asking and she had all sorts of excuses. She also kept dropping things on the floor, like gauze, meds, a bunch of things. I ended up staying in the hospital for 5 days, so obviously I could have used a good nurse that first day. I finally called the head nurse and had her come and send help because I felt so unsafe. I never got that initial nurse again, and all the other nurses after that were fantastic.



Nancy, sorry to hear about the pain. Why are you getting the neulasta shots for 12 weeks? Is that a given?



Kim, Good luck on Wednesday. Taxotere is the same family as Taxol, right? Are they administered the same way? Weekly? DD? Three-week schedule? Is it the Taxotere/Taxol that causes the bone pain or is it the neulasta shots? I guess I'll soon know. My onc. didn't prescribe anything for pain, she says I won't have any. I still have lots of pain meds left over from the surgery. I didn't take them for long at all. It's nice to have a back-up, since I'm reading so much about pain on these boards.



Wenblown, what type of reconstruction are you thinking about?



I realize that I have not had a period since after the first A/C or thereabouts. Hmmm. No hot flashes that I've noticed. (I hope I haven't just jinxed myself.) Could it be that I am finally menopausal?



I should stop now. You must be tired of this longy.



Hugs to all, and I hope my descent from this Decadron high comes gently.



Anna

Odalys

Hi ladies,

Hope everyone is having a good day. Just thought I check in to let you know Taxotere has knocked me off my feet! It feels as though my feet can not hold my body and fingernails are so sore I can barely type. Here we are day 6 and I still have not bounced back. Wow...I was hoping this drug would be easier. Perhaps it will follow the same pattern as AC and the first dose will end up giving me the worst side effects until my body gets use to it. Good luck to everyone receiving treatment this week. Hug...

lana17775

Liz-
Glad you checked in! Sounds like the Taxol treatment went well!
Nancy-
The Neulasta shots knock me for a loop as well - not quite as bad as what you describe, but no fun...I asked if they had to continue for the dose dense Taxol treatments, the answer was yes, but there was an alternative. My onc said I wouldn't need them if I did Taxol on a weekly schedule (12 weeks)instead of bi-weekly (8 weeks). I told her I'd tough out the Neulasta effects rather than extend my treatment by a month - ugh! So I'm surprised you were told differently! Go figure! Maybe the Herceptin is the difference -- I'm not getting that.
Chins up!
Lana

Anonymous

Hello dear friends-I haven't been here for a bit, so I wanted to check in. My best friend came here this weekend and I spent the day strolling down memory lane with her. We also had "Christmas," and exchanged gifts.

I have this week off of chemo, WOO HOO!!!! I am so excited to not have treatment, I can hardly stand it. I have been SO achey, and I am grossed out by my fingernails.

I haven't had Neulasta since being on taxol/carboplatins, but I have had the shot for red blood cells/anemia. The name is totally escaping me (yay for chemo fog!). I have an enormous bruise in my arm where it was injected. Ow.

My appetite came back with a vengance today. I haven't been enormously pukey with this chemo, but haven't had the urge to snack like my old self. My poor hubby hates me, because, as he says, I just breathe and lose weight. Normally I'd be thrilled, but I hate the circumstances under which I'm losing "baby fat."

Hey, can I ask a "mommy" question? How do you all suggest I get Daniel off the bottle? He also has sleep issues, and will not go to sleep unless rocked. Any hints on that? We are going nuts!

Love and prayers, Debbie

spirit3kd

Odalys~ I had that same feeling taking the CAF when I had my seizure. I don't mean to scare you, but it came on slowly like yours with the same feeling and then I started seeing black dots, and my ears starting ringing really bad, I knew I was going but couldn't do anything about it.

The EMT's that came told me when that happens, immediately lay down flat and put your legs higher than your body, so blood can get to the brain.

I have passed out before, but usually that is fast and you don't know what happened until you wake up.

I would suggest you call your doctor, and let him/her know about this. This sounds like it could be serious.

I would also invest into a automatic blood pressure cuff, you can buy them at any drug store, mine came from Walgreens. My blood pressure was 80/0, not a good sign.

I sure hope you are feeling better, and this doesn't continue.

Love...Kaye

spirit3kd

I went back into surgery yesterday and had the port removed. It had only been in for about two months but it was hurting me and uncomfortable and since I can't take chemo any longer, there was no sense in keeping it.

So out it came.....pretty sore today, but when I move my shoulder it has much more range of movement than I had before. It also had a blood clot in it, so would have given me problems on down the road if not removed.

So I am resting and feeling pretty good.....gaining strength back. Still have a lot of pain, but I feel I have quality life for now and hope it continues for awhile.

Love, Kaye

AnnaM

Good to hear from you Kaye. I pray you feel strong and good.

Anna

kim825

Hey everyone,
5 Taxotere down and 1 to go. (well maybe onc. said we'd do more). Have a physical exam first. Onc. said everything is looking good, I feel good, I look good and seem to be handling the Taxotere side effect pretty good. I told him that this last treatment was harder on me emotionally and physically. He said that is normal. He said I should take an iron supplement to help with the energy. Only down side is the iron makes you constipated. After I see onc. you put your name on the list and wait for a chemo room to open. We waited 1hr.15minutes. That is the worst part of this cancer center. But I'd do anything to see this dr. Supposedly he's the best in NJ.
I know a lot of you are having pretty bad side effects from the Taxotere. I had them especially bad after my first treatment. They did get better. The fatigue is horrible and the bone pain is really bad. But that is mostly due to the Neulasta shot. For me I take Tylenol PM and ativan. It has seemed to work.

AnnaM- glad your session went great. I get hyper from the Decodron also. BUt then I crash like a day later. I get the Taxotere once every 3 weeks, with the neulasta shot 24 hours after treatment. I think most of my bone aches and pains come from the shot. My onc. didn't give me anything for pain, just Tylenol.

Odalys- I hope your body just needs to get used to the Taxotere. It really does knock you off your feet.

Debbie, glad you have a week off from treatment. Glad you had a fun weekend with your best friend. As for getting off the bottle. With my first we just let him go and eventually he let it go. My second, he used to bite the nipple top off. He used to make a mess and hated the way the milk then came out. So we used to show him all the nipples he bit off and then he just got used to the cup.My third, she was the hardest, but little by little we used to hide them and there were none left for her to have. She just had used to the cup. Good luck. No advice for the rocking to sleep.

Kaye, glad your surgery went well and gaining your strength back.

Going to rest now. Just wanted to let you know how treatment went today.

((((hugs))))
Kim

Odalys

Kaye - Good to hear from you. Glad to hear you are feeling better and they were able to take out the port. Thanks for sharing your experiences. It so happens I do have a blood pressure kit but was so consumed with the reaction I did not even think about taking my blood pressure. Good tip. I'm keeping a list of side effects to share with Onc at my next visit. So far, it looks like my body started to bounce back. - I hope you continue to feel strong.



Kim - I do appreciate all your feedback re Taxotere. Thanks for always taking the time to answer any questions/concerns I may have. I sure hope the next 2 treatments are better.



Hugs...

karenann

Kaye,

Did you find out if you were Her2+++? There is a new target drug for Her2+++ bc that has a small molecule and it apprently crosses the, blood brain barrier. Clinical trials are now being conducted with this drug and they are having positive results. Also, there is a woman on the Her2 support group board who is being treated with chemo therapy drugs alone and her brain mets are shrinking.

I don't know if you are interested in any of this information, but I thought I would pass is along.

Karen

spirit3kd

Hi Karen~ I was tested for Her2 and wasn't positive. I am not positive to any of the tests they have run. That is why my kind of cancer so aggressive, there is no way to treat it.

Even taking chemo, there is no cure, only palliative care which means trying to shrink the tumors to give me more time.

The doctor and my surgeon both agreed that chemo will not get through the blood brain barrier. I haven't researched on this a lot, but the cancer has spread pretty much throughout my body, so I doubt at this point that any kind of chemo would help.

I felt I had no quality of life on the chemo, not with seizures and laying flat on my back for six weeks. Since the radiation would cause permanent memory loss. What kind of life would that be? Then after the whole brain radiation, if they thought that did any good, they would try chemo again.

I just wanted quality life.....I am 54 and lived a good long life. My children are grown and can take care of themselves. So I don't fear death.

Who knows....I may surprise everyone and get many more years. No one really knows....but God

Hugs...Kaye

Nancy-SanDiego

Good morning all.

Kaye, glad the port is out and you're moving/feeling better. What has been your experience with alternative therapies (i.e. imagery, massage, etc.)

Sounds like many are transitioning into Taxol or Taxotere. It is a comfort to hear your experiences and know what to expect. That is also true of Nuelasta. Everytime I see that TV commercial now, I want to throw my heating pad at the set. It makes it sound so easy.

Just finished a 4-day business trip and am tired. Have another one next week but then start Taxol/Herceptin every Thursday with Neulasta every Friday. That will ground me for a while. Frankly, I am ready.

Oops, a meeting.

Nancy

Odalys

Kaye - I'm inspired by your courage and will to live. You have forever touched my heart. You're right no one really knows…my former neighbor (also in her fifties) was given six months because of advanced metastatic lung cancer… that was 10 years ago! When first diagnosed, she told me she planned to live it up!!! Since then, she has had several surgeries, separated from her husband (still cares too much for each other to get a divorce), sold her house, and now is living with a very young boyfriend. Every time I see her she smiles and says "Yeah, it's me. You probably thought I would be dead by now, but I'm still here!!" She is living with a 1/4 of one lung, but nothing is stopping her. I wish you the same success. BTW- maybe a young boyfriend would not be a bad idea. Take care, sending much love and hugs your way.
Odalys

Odalys

Hi ladies,
Hope everyone had a pain free week and treatments have been uneventful. Would you believe Taxotere put me to bed for an entire week? Wow...I'm normally full of energy (nicknamed energizer bunny because I just keep going and going) but this time I could not even stand up straight. My bones were in such pain and they felt soft and joints were unstable. Today is the first day when I can stand up straight and walk around the house without holding on to furniture and walls. I also have a cold which could be contributing to the bone pain. But the good news is… I'm coming back!!! There is no way meds or cancer will take me down for a long time. Only 2 more treatments and I will be done with chemo. It's been a long and hard "fight" but I am sure I will come out of it a winner and much stronger than ever. Thank you all for being on my corner of the ring! Love you.

BTW- I saw "Cinderella Man" the other night. How uplifting...I highly recommend it.

Have a great day!

LizM

Hello ladies, Well I've on day 5 after my first DD Taxol. Wednesday after I came down from the steroids I was really depressed. My whole body ached from the Taxol and I was really down. I was better Thurs (mentally anyway) but I am still dealing with body aches and pains. I have just been taking Advil because I hate the way Oxycondone makes me feel. My cold is better but my sinuses are constantly draining and I am blowing my nose 24/7. One thing I like better about Taxol is that I do not have a queasy stomache anymore and I can drink bottled water again. My taste buds seem to be worse though and I do not feel the need to eat comfort foods like when on AC. With 5 out of 8 treatments done I am starting to see a glimmer of light at the end of the tunnel.

Kaye, glad you are posting and are feeling better since off the meds. As always you are in my thoughts and prayers.

Hope all you wonderful ladies have a good weekend. Liz

Odalys

Hi Liz - I agree, this cold and runny nose is so annoying! Do you know if we can take Advil cold and sinus? My doctor only suggested Tylenol but that does not help the sinuses.



Mary Lou - How are you doing?



Debbie - Any luck getting the little one to sleep? I wish I had some suggestions but it took us several years before Steven would get used to a bed time rountine and would stay in his bed all night. If we were to do it all over again, we would probably stick to a bedtime schedule and routine since early on. As for the bottle, he rejected the cup for a long time but we kept insisting until he just got used to it. We started to dissapear the bottles and finally he got the message.

LizM

I spoke with my oncologist at my last appointment about my cold and was told I could take anything over the counter that made me feel better so I would suspect that Advil Cold and Sinus is fine to take. I may also try that since I am already taking Advil for the aches and pains from Taxol and I sure do need something for this constantly runny nose. I didn't know that I person could have so much snot (sorry for being so grose) in their nose. The drainage from my sinuses is unbelievable.

Odalys

Thanks. I'm going to buy some today. It is unbelievable...it reminds me of a little kindergartener (sp?) . Have you had any nose bleed? I have...just a little...and it was a little scary.

LizM

Haven't really had a nose bleed but I do have dried blood from time to time. My aches and pains from the Taxol are a little better today so I think I will venture out for a little shopping. Have a good weekend.

Anonymous

Hi ladies!
Odalys-No, not much luck in getting Daniel to sleep without the bottle....although today we went to the outlet mall, and he fell asleep in his stroller without one!! We were so excited! Also, I have had nosebleeds pretty constantly for the past month. I'm anemic, and pretty sure that is why. It's hard to get it to stop because of my constant nose blowing, so my Kleenex are always pink (sorry to be gross, too!!).

I am genuinely excited for those of you seeing a light at the end of the tunnel. However, I can't help but feel sad that I don't really see that light yet! I still have 8 weeks, 6 treatments left!! And that is provided that this stupid tumor disappears completely!! It is frustrating, but I am willing to do what I need to.

Again, I feel great today because I didn't have treatment on Thursday. I have been eating like a total pig because my tummy (sorry, Mommy talk) isn't pukey at all. I've gained 3 pounds in the past 3 days!! We had a blast at the outlet malls finding all kinds of deals and steals.

So, does anyone else have hair growth yet? I have a layer of fuzz/stubble coming in. I'm really excited to see it grow, but apprehensive because it looks either blonde or GRAY?!?!?!?!??! Oh my goodness.......If you can tell from my pic, I was not either color before chemo.

My nails are still discolored, and some are getting more icky. They don't hurt as bad, but they are still sore and tender. I went to the dermatologist about how dry my feet have become, and she said it looked like it was "fungal." EEW. So I'm putting some stuff on my feet each night in hopes it improves. I'm also supposed to soak in a bath each day for 15 minutes, but for those of you who are or have been toddler mommies know that is just hoo-haa!!!!! Not a chance that that is going to happen!!!
All righty....gotta go.
Love and prayers, Debbie