anyone starting chemo in Nov 2005

Anonymous

Hi everyone-I had my first Taxol/Carboplatins on Thursday,and I have to say, it is a piece of CAKE compared to AC. Gheesh-the infusion does take forever, but I totally crashed from the benadryl, and slept through most of it. I feel a little achey, but mostly I feel tired and fatigued. A little pukey, but the nasty taste in my mouth is going away. My fingernails are really sore and feel like they are falling off. They are thick and discolored.
Kaye-still praying for you and your family.
Lots of love and prayers for all, Debbie

Anonymous

Oh yeah, I forgot-my onco said that I am to get 12 weeks of this medicine, and after that, they will do a MRI. If the tumor is still there, then I get 8 more weeks of this crap!!!! ACK. I know I should be grateful that they are doing what they can to make me well, but I WANT TO BE DONE!!!!!! I was supposed to be halfway there as of the Thursday before Christmas. Now I am nowhere near that.
Oh well. Love, Deb

wenblown

OK Taxol women: I start with taxol on Thursday. They give you benedryl and zofran in your IV. And you do not have to take any anti-nauseau (SP) meds?? Sounds great to me.

Just went to Gyno Onc yesterday. looks like I have to have a hysterectomy. The PET scan showed a hit on my left ovary. The sono/transvag sono showed some problem, so the onc recommended removal of the ovaries. Then after discussing it further, decided to go ahead with full hysto. I will have the operation right after chemo is over.

I have been thinking about having a double mastectomy with recon after chemo is over also. I am too scared to go through this again. Plus, all the onc doctors have me a little worried because of my age and background with cancer in my family. They say I have a risk of recurrance, even with everything I am doing of at least 15%. Has anyone been given their % of recurrance? It may not seem very high, but it still seems too high...They also said it will never be 0%. PLUS, I still have yet to get the BRCA done.
Last, I am still having a period once a month. It is very light, but still comes . My onc said this would not happen. Anyone else having that problem?

Deb, OMAG , Liz and Lana: WE ARE DONE WITH A/C!! WE ROCK!!!

LizM

Wendy, sorry to hear about your problems with the ovaries but glad you have decided to take it all out. I had the brac1 and 2 test done due to family history which came back negative after I had already had my bi-lateral mastectomy. I still don't regret my decision as I was diagnosed with mammary cancer, ductal and lobular and lobular cancer can mirror itself in the other breast. Plus my other breast already had atypical lobular hyperplasia. I am stil getting my period and I am 49. I asked my oncolgist yetersday about that because I thought for sure I would go into menopause. He told me his guess was that I still would before chemo was over. If not, we are going to discuss drug induced memopause (not the medical term he used). He said it is a harder decision with someone who is 49 because they just don't know how close you are. If I was in my early 40's or over 50, it would be an easier decision to make. I was so hoping I would go into menopause because I have had some problems with very large fibroid (treated with UFE) and other GYN problems that I am tempted to just have it all taken out too. Hugs, Liz

c2et

A hello out to all:
Thanks for welcoming me into this wonderful group. I hope everyone's treatment is going well.
I'm thinking of you all and wishing you well

kim825

Hi all,
Congrats to all of you done with A/C. On to Taxol. Deb glad your first treatment went well. Started feeling back to myself again today. I had my bad days (days 3-6). Just very tired and fatigue. In a way it is good it lands usually on the weekend when my husband is home, but then we usually loose quality family time.:( I guess there just isn't any good days to be bad. Right? Hope you are all having a good week. Thoughts for all of you going to chemo this week.

Kim

Odalys

Hi ladies,
Thinking of you and hoping everyone is having a good day. How exciting to see some of us finishing one phase of chemo! Yeah!!!! Now, on to phase two - for some Taxol and for others Taxotere.

For those ladies still receiving A/C, hang in there, soon we will be celebrating your victory as well.

Many hugs...

LAT56

Treatment #3 of ACF went well. Once again, I had to go back for a Neulasta shot and that went okay, except that it's been denied by the insurance again. Quite costly injections! I am feeling good and trying to keep positive. Even went outside in the brisk winter weather for a walk. Drinking the proper amounts of liquid is still difficult, and I strive to find something that tastes good without adding too much sugar.
Hope everyone is remaining strong and positive.
Hugs & Prayers,
LAT56

kim825

Lat56, glad your 3rd treatment went well. I am sorry your insurance company won't cover the Neulasta shot. I don't understand why some cover it and some don't. Luckily our does cover it and I don't have to make the hour trip to the Infusion Center 2x a week. I, too, am having a hard time with the liquid. My husband keep bringing me home different water to taste and to see if I like it better. LOL!!
Staying positive,
Kim

Odalys

Hello ladies. Went to see the oncologist today and he gave me the option of not getting a Neulasta shot for the next three treatments of Taxotere. So far, I haven't needed a shot and my blood work has been fine. My first reaction is no shot unless necessary but I am a little nervous and would love to get your opinion. Do you think the benefits of getting the shot outweigh the side effects? Thanks.

Many Hugs...

kim825

Odalys,I wasn't given an option to have the Neulasta shot or not. My blood work has been great and I think this is due to the shot. My side effects are mostly bone aches especially the legs. Usually comes days 3-6 with the side effects of the Taxotere. (fatigue/tiredness). How were your side effects from your Taxotere treatment?

hugs...
Kim

Odalys

Kim - I will receive first treatment of Taxotere next Friday (1/20) and I am wondering if I should risk it without the shot again. Blood work has been normal after every treatment of A/C. Doc thinks I may not need the shot after all. Also, we are trying to avoid painful side effects since A/C put me in a pain crisis on days 5-7 requiring me to be heavily sedated for two days. They never could determined what caused the pain (think maybe 5-FU) but we're hoping it does not happen with Taxotere. Interesting...I never worried about the shot before but feel anxious about it this time around. I'm not sure what to do.

Anonymous

Hi everyone, how are you all?
Odalys-I haven't had the option of Neulasta with my Taxol/Carboplatins, since I get it weekly. My blood work has been fine for these past two weeks (praise God!). I think I get it on week 4 of this cycle.

Ok, I am going to take an informal poll. Our church is doing a free photo directory. When I got the info in the mail I was so excited to have the chance to get a free family picture!!! Then I was like, "Crap....I'm bald..." But now I am thinking it would be a very healing experience for me to pose with my family and NO HEAD COVERING/WIG (haven't worn the stupid wig yet!). That way, when I am free of breast cancer at the tender old age of 99, I can look at that picture with pride and say, "Look how far I've come!!! I have 33 grandchildren, written the Great American Novel, and counseled thousands of breast cancer patients!!!" My hubby thinks I'll look at the picture and think, "Look how sick I look." Sure I will think I looked sick, but my goal is that the term "look" is PAST TENSE!!!!!

I had my second treatment, and just feel really tired, not barfy at all. I seem to have connected with Nestle bottled water. I cringe at the Wal-Mart brand of water, and can tolerate Aquafina (my old favorite). I didn't get weighed today, just got treatment, so I don't know how I am doing with that....I think I have leveled out at a 14 pound loss. I'm ok with that, since I am staying there.

Lots of prayers for all!! Debbie

Anonymous

Oh, I forgot to add that I have some definite fuzz growing on my head *YAY* So if I posed "topless," I can see how my hair was starting to grow!! Debbie

WandaG

One week out from taxol #1 and so far it has been easier than A/C. Next Wed. will be # 2 and that may be different. So far no queasy stomach, but lots of bone and muscle pain for about 3 days, now just some mild aches, but I think that is from neulasta. I had a reverse reaction to benedryl and didn't sleep for 2 days and nights even took ativan, but I did crash the 3rd and 4th day. No more decedron afterwards and I sure don't miss that. I'm tired and short of breath sometimes, but definitely feel better than on A/C.
Debbie if you want to have a picture made "topless" I say go for it. My son shaves his head and we're having a picture made together while I have no hair. I'm a Century 21 broker and my other son is going to air brush the C21 logo on my head so we can make pictures and I plan on showing my office. This dreaded disease gives us so many low points in our life I say do whatever brings some laughs and helps us get through.

Mary-Lou

Hi Girls, it's my birthday. 50 years has passed in my life. WOW!

I have had so many think of me this year. I hope on the # 51 I will be healthy and have a full head of hair.

We had a small group over, family and friends. Sept is when I will have a big party with my husband on his 50th. January is not a good time of year for anything. And I don't feel all that well.

My blood count was down again this week. I had to have a shot this morning. Plus I have a UTI, just great.

I may have to go back to the Neulasta. But my last A/C is behind me. Not sure what the taxotere will bring. But it has to get better than this. Yuck

I feel so puffy, and I am short of breath. And hateful and tired. And my house got on my nerves.

I like my house clean. I felt it was getting behind. The tub, dust, vacuuming, just not done as often as I would if I felt better.

My husband is wonderful, but he is male, and I see everything that is wrong. I know it's the drugs LOL

Hope you all are doing well. Kaye, a special Hug.

c2et

Wishing you a Happy Birthday.
Sending you hugs and the best.

Odalys

Happy birthday! Wishing you at least 50 more birthdays!!! You don't look a day older than 35. I know what you mean about January not being a good month; my birthday is on the 22nd. Any other January ladies out there?



Debbie: glad you’re doing much better. Topless??? Wow, very courageous of you. If it makes you feel good…go for it!



Omag – Glad to hear Taxol is better than A/C. Like your picture idea, you may even start a whole new trend in your office.



Sending everyone some warm FL sunshine and many hugs your way.

wenblown

Hello everyone: Hope this find everyone doing well.

I had my first taxol yesterday. I received too big of a dose of bendryl. I thought I was going to heave and everything was out of focus and spinning. I kind of got scared. They are cutting it in half next time! I finally got the taxol later. They did give me a dose of decadron (sp) in my IV, but that is the only one I have to have, YEA!
I still have to have the neulasta shot for this first visit. If my counts are fine, they will discontinue!! Is anyone else receiving taxol or is everyone here on taxotere?

I woke up feeling great!!! Such a change from the A/C. Water even tastes good!!!

Well, I am having a hystorecomy (sp)in March and at the same time, they will do the double mast and reconstruct. All in one surgery!!! Here at University of Kansas Med center the surgeons I talked with do about one of these types a month. I am a little scared of how long I will be under since it is a 6-7 hour surgery, but they say I am very healthy and young. I should be off for about 4 weeks

My question is about the mastectomy. I need more explanation about the expanders. I remember some one talking about that, but not in much detail.

Deb: the picture is all how you feel. My husband wanted a bald christmas pic of me. I totally refused. Just my personal preference. At the time, A/C was hitting me hard as well as holidays. I just do not want to remember this time. He wants to remember just like you! I say what ever is comfortable for you.

Mary Lou - Happy birthday and many more to come. P.S. there will always be dust, just take care of you right now

Odalys - My in-laws have a couple places in Cape Coral and stay about 8 weeks in the winter. I just spoke to them. They said weather is good and beaches are better. They just purchased a place on Sanibel Island!!!! They said my family could come stay as soon as I am healed from my next surgery!! Thanks for the sunshine, I just love Florida

Happy day to everyone:

Anonymous

Hi ladies-
Mary Lou-Happy birthday to you!!!! I swear, you look so much younger than you say you are!!!

Wendy-what is your question about the expanders? I will be getting the same thing done whenever they decide I can stop my chemo (who knows when that will be?!?!). My plastic surgeon gave me a pretty good explanation of what is going to happen.
Well, Daniel just woke up way early and won't let me put him down, so I'd better sign off....
Love and prayers, Debbie
PS-still thinking of you Kaye!

mrsz0619

Hi there, Everyone. I can't believe how long it has been since I posted. I really don't know why I have been away so long, certainly not too busy. Although, I am reasonably busy, with appointments of all sorts. I want to welcome all the newcomers, and sure hope they find the support they need, as we all have. Also, I have been thinking about you, Kaye, a lot, and praying for you. I am so sad about the decisions you have been faced with. you have a great spirit, like your ID says, and you have given so much of yourself in your posts, I only want peace for you. You will remain in my prayers, as all of you on these boards do. Happy Birthday Marylou. Good idea about the combined birthday later this year.



I am having my 4th/last A/C treatment, next Thursday, 1/19. After each treatment, my symptoms got worse, but never horrific. And I do believe the symptoms I have been having, are due to the anti-nausea meds, not the chemo. I have not been sick at all. But around day 5, after I have stopped the 4 full days of decadron, zofran, compazine and ativan, I am so bloated and constipated, I can barely move. This also wreaks havoc with my energy level, with bottoms out in the 2nd week after treatment. I have been so tired this week, I barely accomplish anything. I am looking forward to ending the A/C next week. I am terrified of not using the anti-emetics, and being sick, that for the last treatment, I am just going lay on the couch for the week. I suppose I ought to use more of the senekot, or drink more apple juice. I try to stay on top of the water intake. Any one else getting this miserable feeling?



I was pleased to learn, I do not have to have the Taxol. That will take 12 weeks off of my schedule, and get me to radiation in February. I have learned I lose my health insurance, April 5th, and I cant afford the cobra payments, so i am planning to go back to work. I met with my surgeon yesterday, to discuss having the margin cleaned up, with a small surgery, and postpone the bi-lateral/recon for 6 months. The surgeon definately wants to clean the margin, rather that wait 6 months, and I can go forward later wtih the bi-lat/recon later. Although, in the surgeon's opinion I would be surgically cancer free, and not need to proceed. But it is my choice at any time to do it. Damn insurance, getting in the way of my best laid plan! But I cant do it without the insurance. I dont want to become complacent and never do the bilateral, although the doctor said getting back to a 'new' normal life, will be good for me. And in time, maybe i will be comfortable with the recurrance %, and not worry so much. My recurrance % is 25-30. That I feel is high, and may keep me motivated to proceed later.



Have a great weekend everyone. LynnZ

AnnaM

Lynn, I too found the fatigue after A/C to be cumulative. My 4th and last round ten days ago truly wiped me out.

I am sorry to hear you have to juggle health-care coverage questions at this time in your life. As if you didn't have other things to think about!

I keep reading that doctors really don't master percentages and tend to give us rates that are out of date, or that show a group's risk over a very long period, which would make that number unbearably high.

I firmly believe in doing everything in my power to cut my risk of recurrence, but I also firmly believe in forgetting the exact percentages of risk cited in my case. My job has to be to keep fit and healthy, to pray, to keep my eyes peeled for ways in which I can help others, and to live as full a life as possible. It's strange; I have only learned what depression is all about since my diagnosis, and yet I want to live more than anything.

Happy belated birthday Mary, and welcome Glyn.

I saw my oncologist today and we discussed my Taxol/Herceptin protocol. I start on the 23rd and will get weekly treatments for 12 weeks. She told me the side effects will be far more manageable than the ones I have had with the A/C, especially since I will be getting weekly, thus smaller doses.

That sounds encouraging.

I needed a dose of encouragement just now. I had to let go of my daughter again. She went back to France yesterday and I probably won't get to see her till August!

It's just too hard....

I asked my oncologist if there was anything I should do to prepare for treatments, you know, like popsicles, etc. She said to just keep going with the increased water intake, but other than that nothing in particular. I don't even need to take the EMEND, it seems.

Is that what those of you who have started Taxol have done?

Good luck to all my sisters who are going in for treatment this coming week. I am looking forward to a week 3, you know, one of those blissful stretches where you can go out for walks, see friends, wear something other than sweats, maybe even give your wig a little outing once or twice. I think I'll even take my husband to see a movie.

Hugs from Anna

LizM

Hi Ladies, I'm on day#6 after my last AC, woohoo!!. Side effects are the same but I think I am a little less patient with them this time knowing it was my last AC treatment. I am not trying to read up on the Taxol threads so I am somewhat prepared for the side effects. At this point I will just be happy if I don't have this queasy feeling, crappy taste in my mouth and can drink water. I am expecting there will be some pain with Taxol but hopefully it will be better. My first taxol treatment is on 23 Jan.

Happy 50th birthday Mary. I'm not too far behind, I will be 50 in April. I use to dread turning 50 but now I am just happy to be turning 50 and anxiously awaiting completing treatment.

Wendy and Debbie, I had a bi-lateral mastectomy with tissue expanders done at Hopkins. Actually the procedure is quite amazing. I woke up from surgery with cleavage and in a bra. They put the expanders behind the chest muscle, put in the temporary implants with 100cc and covered the iplants with my skin. The mastectomy scars are on the top and are only about 4 inches. I went to PS to have saline put in every week to two weeks until I started chemo. I now have 200cc and am a size B and they are going to put in more saline after chemo before I start rads. I am thin with small frame so a full size B is good for me. They really look good and match perfectly. A few months after rads I will go in for the permanent exchange and I believe they will take out the expanders and put in permanent saline implants. I had no complications or infections whatsoever from the surgery and I am very happy with the results so far.

Nancy-SanDiego

Hello all you wonderful ladies. Anna, make sure your little dog has his passport--I can see him learning French easily. By the way, I have a great toffee recipe for you and will send along. Let me know how you are doing.

Kaye, hope things are going well for you finally. How about you Debbie, you doing OK?

How are you newbies getting along?

Grace, count me in on the beach-side prayer service, even if it is only virtual.

Busy week, all day meeting in Los Angeles on Monday and teaching M-W. I held up pretty well, but ready for bed early. Friday, finished A/C-4 (major milestone). Have an echo in 2 weeks and then start weekly Taxol/Herceptin. Onc says I probably won't need the Dex (steroids) except in my IV (hurray!!!) and probably won't need Emend. Now on Aranesp and start Neulasta on Monday. Sounds like I'll trade nausea and hyperactivity/general craziness of steroids for aches and pains. The terrain on this journey just keeps changing and so do we.

Stay well and stay warm.

Nancy

spirit3kd

Checking in with everyone.....hope you are all doing fine.

I am gaining some strength back....still have no hair after that one chemo treatment on Nov. 28th. I thought I would have something growing back by now, but what little is left is still falling out. Haven't had to shave my legs or arm pits for ages!!

I have to pace myself....I get really tired and weak, but that is to be expected. As long as I can rest and function, I will be happy.

Hugs....Kaye

cojadeb

Hello Ladies,

I have spent the last few hours catching up on the 8 pages of posts I have missed over the last several weeks. Between work and treatments I have not had a lot of free time. Now that Christmas is over and I can go back to a normal schedule at work hopefully I will have more time to check in.
It sounds as if mostly everyone is doing ok and starting to finish up the first section of their treatments. Congrats to all and pat yourselves on the back for getting through.
Kaye you are in my thoughts and prayers and I believe in the power of prayer and also in miracles so never give up hope, you have been an inspiration to us all.
On Monday I have the last of my 4 AT treatments. I was thrown for a small loop back in early December when I found out I had "maxed" out my allowed adrimicyn dosage. The last 2 I have gotten have been with a medication to first surround my heart and protect it. I also had to have a muga scan and make sure my heart is ok. It is so that was a load off my mind.
I too will be receiving 6 doses of carboplatins but my will also be with a drug called Xeloda. I thought I would be done before the end of the year and was not happy to hear I would have to continue but have wrapped my head around this and know that I have to continue and I want the best possible shot at not having a reoccurance so I am willing to do anything.
I still feel pretty good and the side effects have been minimal and managable. Although I hate the hot flashes and am back to a 2 hour sleep plan instead of the 4-6 I was up to.
My oncologist is happy I have been sent back into "chemopause" but I will need to make some decisions on going into "early" menopause when my treatments are up. I am leaning towards an oopherectomy instead of the monthly lupron injections. I have been blessed with two wonderful kids I never thought I would have and at the age of 43 (just turned last week and embracing it fully) I am done having kids,plus my almost 17 year old would be mortified. Is anyone else considering this as an option to the injections?
I am looking forward to being finished with the AT and getting my hair back since my onc has promised me it would come back during this next leg.
I will try and check in more often.
As always you are all in my thoughts and prayers.
Deb

Anonymous

Hi ladies!!
Anna-no popsicles necessary w/taxol!!! I was thrilled, because the thought of popsicles makes me want to hurl now. I did get a tiny mouthsore, but just swished w/my BMX solution and it is fine.
Deb-we can be angry/bummed about our prolonged treatment together. I am still sad about having to continue when I thought I'd be done by end of February. The carboplatins is really not so bad. I feel so tired and generally achey, but nowhere near as bad as with AC. I agree with you completely-whatever I can do to avoid future problems, I will do it.

I had an embarrassing moment earlier. Our church has been feeding us on a regular basis since I was diagnosed. Well, the wife of my former principal where I used to teach also set up some meals for us at the same time-who am I to refuse it...I figured we could stick the extra stuff in the freezer, I'm sure there are going to be days when we won't want to cook and food isn't delivered, right? Anyway, tonight we had THREE different people delivering food to us at the same time!!! One family had signed up to do it, another family was delivering for their time slot tomorrow, and the other family was from the arrangements of my old principal's wife. I felt so stupid...one of the families looked irked, and said, "They didn't look at the sign-up sheet, did they?!?!"
We have so much food, too. I totally don't eat what I used to, and both of our freezers are stuffed to the brim, and I still buy junk food, and let it sit there because I don't want to eat it. But do I throw it out? No....
Kaye, I am so glad you checked in. We love you and pray for you!!!!
Stepmom is on tonight, and even though I have seen this movie a thousand times, I never once caught that her cancer spread to 3 lymph nodes. Amazing what I've learned to hear since my diagnosis.
Lots of love and prayers, Debbie

WandaG

Kaye,
I check this thread each day to see if you have posted. You are in my thoughts. Glad you are gaining some strength and hope it continues. Please post when possible to let us know how you are. You have such a will, please hang on to that and I hope you can rest and function and be happy.
Best wishes, Wanda

wenblown

Hello everyone: I am on day 4 of my first Taxol. I did receive the neulasta shot on Friday. I am having severe bone pain. I believe it's a combination taxol and neulasta. The good news is I do not have the bloaty, indigestion feeling I had with a/c. Plus, no meds!!!! Water is tasting much better.

Thanks LizM for the info. I am just learning all this new stuff.

Take care

Odalys

Good morning ladies, glad to see so many posts in just a couple of days. How comforting to know most of you are responding well to the next phase of chemo with less side effects.



I've been feeling great lately with more energy and a clear head. No more chemo fog, constipation, bloating, or stomach cramping. Yeah!!! I'm starting to see the light at the end of the tunnel. Maybe the next few weeks will be more manageable and hopefully pain free.



BTW- Onc wants me to place hands and feet in a tub full of ice while receiving Taxotere. It will help minimize the side effects on the nails and fingertips. I'm all for minimizing side effects and saving the nails but don't know if I can have my feet on ice for long. Anyone else having to do this?



Have a good day. Many Hugs...