Any May 2009 Chemo Starters?

TomnDi · July 2009

Howdy. I'm just visiting from the June Chemo's but wanted to ask a question from those of you who are further down the road. First, you should know that I'm the husband of a very courageous wife with BC, Diane. The Junies have made me feel very welcome but I still feel like I'm eavesdropping on some rather private, yet inspirational conversations. Each of you is incredible and my heart and prayers go out to you.

We will be completing tx# 4 of A/C tomorrow. We then begin 4 tx's of Taxol (every two weeks). How does the Taxol and the accompanying s/e compare to A/C? We've noticed that following tx# 3, it's getting more and more difficult to bounce back. The Neulasta has helped but Diane still experiences some low grade fevers about a week following tx. This last go round has really been difficult for her. One of the Junies was told by her nurse that tx# 3 of A/C would make her not want to come back for #4. Not the best of bedside manners but we're finding some truth in those remarks.

Still, I'm anxious to do what I can to help my sweet wife of 31 years prepare for the Taxol. She's a very private person and doesn't like to go on-line. I'm her researcher; it helps her AND me as we work to get through this blip on the radar.

Thanks in advance for your help.

Tom

benisse · July 2009

Dear May Marvels,

Count me in on the Taxol as well. I had my first of 12 weekly yesterday. I feel fine. I have some bone pain in my ankle and wrist but it is very mild and I'm not even taking OTC pain killers. I am flushed. No nausea which is a first...I was very nauseated for a week or so after all 4 FAC treatments. I will finish Taxol on Oct 13...so I'll be here at least until then and appreciate the information and support.

I went to Pittsburgh to see inlaws over the weekend. Had a great trip and visited Fallingwater...a Frank Lloyd Wright house. My sons loved being with grandparents and I had a really nice break.

I hope you are all doing well!!!

TexasRose · July 2009

Tom- I lurk on all the other chemo threads so I have seen your notes about your wife before. What a great husband you are!! I won't lie to you. AC #3 and #4 were pretty bad for me. Each got a little bit worse. For me, Taxol is a thousand times better!!! I feel like a real human being again. No nausea at all. The fatigue is not nearly as bad and I have had no neuropathy yet and only very minor bone pain. I have only had to take OTC pain relievers once and I have had two Taxol treatments. I know others have had problems with Taxol, but for me it has been easy. I hope it continues. I am doing my Taxol weekly though, so I don't know if that makes a difference or not. I see your wife will be getting it every two weeks. I am back to cooking again. I didn't do much cooking (or eating!) on AC. My appetite is back to normal. I know we all react differently, but I am so glad to be done with AC and doing Taxol now. Whole better ballgame for me!! My hemoglobin has been low, but so far that has been my worst SE and has not yet been low enough for blood or to miss a treatment.

Benisse- I am flushed today too. I took my temperature and it's fine. Not sure why I am so flushed. Glad you had a great trip. My beach weekend after AC really fixed my attitude. I needed it so badly!! Planning another little weekend getaway and booked a cruise for December. It helps me so much to have things to look forward to!

I was a late starter too. I didn't start chemo until May 26th, so I was almost a June girl. Between 4 DD AC and 12 weekly Taxol, I will not be done until October 6th. No rads and no other drugs for me since I am triple neg.

debbie6122 · July 2009

Hi Tom sounds like your wife diane has great support and a wonderful husband, it took me a couple of months to come on this site too never thought i would do any support groups but when i came here it helped so much, but you are welcome here and hope you keep us all posted how she is doing, wish i could be more help to you, but there are so many woman who are going thru what your wife is growing thru, and will be able to help you alot! you and your wife are in my thoughts and prayers

angel hugs debbie

lassie11 · July 2009

I'm thinking maybe Tom could give some lessons to some of the other husbands out there! Your Diane is lucky to have you in her corner.

deb6563 · July 2009

Hi Tom I found the 3rd A/C to be the worse of them all. I did not want to go back for #4 and if #4 had not been the last one, I don't think I would have gone back. I am doing weekly taxol and will have my 3rd on Friday. Taxol is so much easier than A/C. Right now, I am only missing 4 hours per week of work while I go for the treatments. With A/C I had to take off an entire week after each one. With Taxol, I don't have the nausea, don't need the neulasta shot and the fatique is managable. I don't know how going every 2 weeks will affect your wife, but it will be better than A/C.

TexasRose - you aren't having rads? I am triple negative also and I will be doing 6 weeks of rads after the taxol. I will finish with taxol on October 1st or 2nd take a 3 week break and finish rads the first weekend of December.

Hope everyone has a great evening.

{{{HUGS}}}

TexasRose · July 2009

Deb- No one has mentioned rads since my surgeon talked about it back in April and she told me no. I had a mastectomy with clear margins. I am hoping they don't change their minds!

Edited- I went back and looked at how I worded that in my post. It was confusing. I didn't mean no rads because I'm triple neg. Just no rads. Period. Because I had a mastectomy and clear margins.

benisse · July 2009

Mary - I'm so glad you're through 2 and doing well. The flushing is weird looking but I'm glad I'm not alone. Do you know if we're in nadir the whole time we're on Taxol or if it is less of a concern. The doc said the WBC is not as much of an issue as it was with other drugs. I'm just wondering if I need to be as careful about no crowds, etc... I would like to take the kids to the circus this weekend and don't know if that's a good idea for me. Hope you continue to feel better and get lots of rest.

Tom - This is a little late, but my 4th FAC was the worst, 3rd was the best...so I think it varies widely. I hope she was so happy to get it over with that she was able to get through it. Regarding Taxol... I'm on a lower weekly dose than she'll be receiving every 2 weeks, but for me, Taxol is a breeze compared to FAC. The fevers can keep her from receiving treatment, so she should rest a lot after this treatment. Tell her she is not alone!

Best wishes for a good day to all.

zuzeee · July 2009

Hi Marvels

Yipee last Ac chemo was yesterday and I feel great just knowing that chemo is over, mind you the steroids help!!! Go for simultion on Monday at Hamilton, a 2 hour drive, rads will hopefully start in 31 August . Have decided that I will stay over in Hamilton, Monday to Thurs nite incl as I think all the travelling will be too sretessful and work is just going to have to cope without me for 3 days a week for 5 weeks. So wonderful to have light shining brighter at the end of the tunnel. I do hope you are all beginning to see the light as well

Pink Hugs Susie

cs34 · July 2009

hi everyone.

i have a few questions. i start my first taxol next friday, aug 7th and i'm so scared but i see you all have had such an easier time with it than the a/c.

1) (a little crazy), do any of you get nauseous just thinking about the a/c treatment? i do and i'm concerned that will determine the outcome of my taxol in a negative way that's unnecessary.

2) why would we be able to stop the nuelasta shot with taxol? do you recommend that?

3) i had the double mx with latt flap and my body ached SO badly with the nuelasta. did anyone else have that too? Will it be worse with the taxol? i hear a lot about body aches with the taxol. becuase of my already fragile upper torso, am i doomed for body aches?

HELP!!!

TexasRose · July 2009

Benisse- I was wondering the same thing about nadir the other day. The only count of mine that anybody seems concerned with since starting Taxol is my low hemoglobin. I guess my WBC is fine. I avoided crowds the whole time I was doing AC. I haven't really done that since starting Taxol. I feel so good. I even started painting my craft room today on a wild hair. NEVER would have had the energy to do that on AC!! I will have to remember to ask the clinical trial nurse next week. She is out of town the rest of this week. I feel so much better that I want to be back in the action now instead of hiding out at home!

cs34- Yes, I still get nauseous thinking about AC. I still get nauseous thinking about some foods I ate while on AC. I still get nauseous when I see ice chips. During AC, I would get nauseous just driving to the hospital even if I wasn't going for my AC treatments. We are hoping that as my Taxol treatments go on and there is no nausea that the nauseous feelings will go away. It is getting better.

I was told that I wouldn't need the Neulasta shot with Taxol because I'm getting it weekly and the dose is low enough that it won't affect my WBC. I never had any bone pain with the Neulasta shot and so far not really any with the Taxol. Sorry, I can't help you with that.

Yay Susie!!! Congrats on being done with chemo!!! I cannot wait until I can say that!!! Big hugs to you!!!

TomnDi · July 2009

We can relate to the nausea and ice chips. Don't know why but they seem to bring it on. Today, Di opted for small pieces of hard candy in a cup of ice. It helped. Today was Diane's last A/C treatment. We're not looking forward to the next week but we're looking forward to starting the Taxol on August 13th. Hope the 4th and final A/C treatment isn't quite as bad as we've heard. We'll see. Thanks to everyone who has provided feedback on the s/e of Taxol. For the most part, it sounds as if it will be easier. At this point, we'll take anything remotely easier.

We got some good news today that following the last of the Taxol, her onc wants to wait a couple of weeks before beginning the 6 weeks of rads. So we're heading down to Tucson in mid-October to see the two grandsons. Of course, we won't mind seeing their mom and their dad, our son, too. My son keeps telling us that the older he gets, the smarter we seem. Oh the joys of parenthood!

Here's wishing everyone a wonderful weekend.

Tom

anji111 · July 2009

Hi Tom, I can only say ditto to what everyone has posted (except I am on a different treatment). I hope you enjoy your visit!

Congrats on finishing chemo Susie. (And to everyone else that's finished!) Smile

I had #4 today and starting to feel a bit sickly. I've been just exhausted the last few days and my legs feel like dead weights. Never had that before. Neulasta shot tomorrow. Only two more, I almost don't mind feeling so crappy, I'm starting to see the light at the end of the tunnel.

How are you doing Becky and Nancy (Pantufas)?

And sorry about your troubles Vicki. I hope it gets better for you. They should never make us try to choose between them or our kids. I chose my kids, twice! My second husband did come around, it took a long time though. And he's 100% better than he used to be. But still, you shouldn't have to go through it. And tell him the grass is not always greener on the other side either! My husband found out the hard way Smile . Anyway, thinking of you.

Take care and have a good evening everyone.

Anji x

LRM216 · July 2009

Tom - you are certainly one in a million! Your wife is so very fortunate to have you by her side - this will help her greatly.

I just want to say my AC 3 and 4 were fine. No bad side effects ever, but the Neulasta shot always did me in. I also had febrile neutropenia and a hospital stay of 5 days after first round - and was put on antibiotics for all remaining rounds and never had a fever again, but did have neutropenia each and every time. Then went to DD Taxol x 4 every two weeks and had to stop after first one. Had horrible bone aches. No Neulasta is needed for taxol as it does not suppress the bone marrow production as does the AC and the Taxol. So that was a plus, But then I also developed grade two neuropathy of all my fingertips and toes and this alarmed the onc considerably. She took me right off the Taxol - delayed me one week - and insisted I switch to Taxotere. This one too can cause neuropathy, but is not as bad as the Taxol. Taxotere went well today and my side effects should begin on Saturday and Sunday, so I have to see what I get with this one! She did give me percocet which she wants me to start on Saturday and keep taking before any pain sets in. The downside to all this is now I am back on the dang Nuelasta shots the day after, as the Taxotere, like the AC, does suppress the bone marrow and can cause neutropenia. This I am really hating. Good luck to you and your wife and on behalf of so many of us on the board, thank you for being there for your wife.

Linda

luvtheocean · July 2009

Good Morning Marvels! I have been reading all week but just haven't felt much like posting. For those of you that have moved to Taxol, just so you know, I still get little bouts of nausea thinking about certain foods and it has been 3 wks since my final A/C. I'm starting to think it is all in my head. Undecided I finally see a little peach fuzz up on the noodle, but darn it all I had some of the stubbles come thru at the same time and they hurt like the dickens so I shaved just those off. Won't I be cute with patches of hair missing!! LOL!! Still taking a nap every stinkin day, I am starting to think that is from the xany that I am still on. Sometimes I take it and fall right to sleep and sometimes I don't. I am still feeling on edge, guess it is from the rads coming up. I start on Aug 13. After reading some of your posts, I feel so blessed, my husband has been a saint and my teenage son, well, not a saint but 'gets it'.

We are going back to the Lake this weekend. I want to get as much time on the water as I can before they start to fry my boob!

Sounds like a wide array of S/E's now that we are, as a group, almost done with the worst, the A/C! I hope everyone is doing well. I pray for all of us everyday! Enjoy your weekend ladies!

Becky

jaelsne · July 2009

Hi all,

There's always some drama around my chemo time. I had my #4 t/c (out of six) on Tuesday. Went to my dentist that afternoon, then to an endodontist and finally an oral surgeon on Wednesday to get my tooth pulled.

Spent most of yesterday (Thurs) in bed, then decided to run an errand to pick up my new glasses. On the way home I stopped at my grocery to buy some soft food, got really woozy and almost passed out. Wound up spending about 5 hours alone in the ER after being taken there by paramedics. I was a bit dehydrated, but I think the main thing was that I just plain old overexerted myself.

Today I'm not leaving my house!

Jo Anne

Hemen · July 2009

Hi Everyone--

I am glad to see that the taxol seems to be treating you guys better than the A/C-- that must be a huge relief!

Remember that song, "I don't like Mondays"? It holds new meaning for me now Yell . All my treatments were on Mondays and I still sleep like crap on Sunday nights and wake up Mondays with a lump in my throat ...until it kicks in that I don't have to go to the hospital. I think it will be a while before all these physcological tricks our minds are playing on us fade away. I too can't look or smell certain foods... our poor bodies and minds really took a beatin.

Tom-- you are so sweet to reaserch and get the info for your wife.

Vicki and Anji-- the first thought that went through my head after the "Oh F&%( I have cancer" was "thank god I am not married to my first husband anymore." Nothing worse than being married to a narcisist-- and being married to one while going through this must be shear hell. It's not fair, and my heart breaks for you. Luckily, my wonderful husband of the last 4 years has been amazing-- . I too have teenagers and one is driving me crazy-- too much like her dad. My cancer is curtailing her social life and she doesn't like it. I know it's the age, but I know she will be so upset she treated me this way when she's older.It sucks.

Anji--I did 4 treatments of Taxotere and cytoxin and my legs have been dead weight since I started-- and still are. I refer to it as rubber jello legs. I can barely make it upstairs on 2 feet--I end up on all fours by the top. I am ok on the level, but any incline kills my legs. Feel like I am in the body of a 90 year ol.

Jo Ann-- you need to take it easy-- the T/C is tough with fatigue. I hope you can relax and stay in bed for a while.

I go to rads set-up on Monday (hahaha--another Monday) -- I imagine I'll be starting mid August--right when I go back to work--JOY.

Big hugs to everyone!

Helen

gmp300 · August 2009

Good Mornign May Marvels, Just popped in to say hello to everyone. It seems that everyone is in a different place right now. I hope everyone is feeling fine and moving on! I have been camping and have not posted much but have kept up with everyones posts. Good Luck to all and you's are always in my prayers.

I just finished my 4th and last tx on Thursday. Relieved it's over and now just have to get thru the next few weeks of SE. Somehow knowing this is the last time makes it easier! Iam having a BD sleepover right now for my dd who just turned 13. Her friends are still up from last night and the adults are coming over for a BBQ at noon. I plan on being done by 4:00 and then I will crash! The steroids will be wearing off by then! LOL!!

For anyone interested or knows someone who might be interested in saving thee hair thru chemo I would like to say that the cold caps worked. I have been using them and I kept all of my hair. I might of thinned out 10% (only strands occasionally came out when I combed it) It is truly amazing. I know it won't help most of you now but maybe you know someone who is going to start chemo and can share it with them. If I ever need chemo again I would not do it without my cold caps! I feel like myself right now and it really took the sting out of chemo.

I better go start getting ready for the BBQ. The girls just fell asleep and will probably sleep all morning! Yeah!! I better get my stuff done now!

Take Care Everyone--Geri

benisse · August 2009

This thread is becoming very quiet. I had my first Taxol on Tuesday. On Friday, I began to have muscle and bone pain. I took a Tylenol and that helped a bit. Then on Saturday the pain was back. I took Claritin and Tylenol and slept on a heating pad. The pain is back again today but I haven't taken anything yet.

Me too on the ice chips...I don't have ice in my drinks at all any more...except on chemo days. Also, gag at the thought of anything I have on chemo days...even though I'm not nauseated from the Taxol.

Mary - I decided to be safe rather that sorry and skipped the circus. I'm going to talk to the doctor's office tomorrow and ask about nadir. I'll let you know if I find anything out. Hope you are feeling well.

I hope that everyone is too busy to post because they're feeling good.

LoriR · August 2009

Hello May Marvels

WE have quieted down quite a bit... I am now 11 days pfc and just worried about the nadir myself. I was really low at the last chemo so I am worried that I am am even lower now. Of all things I have a cold soar under my nose (super attractive!) goes well with the bald head and thinning eye brows!

I go for rads simulations etc on Thursday and Friday of this week so I am looking forward to seeing what that is all about. I was just wondering if anyone knows what if any kind of bra we can wear while on rads. I was looking at some of the other threads and some are talking about not wearing anything. That would not go over well with me. I am a runner and never even thought about it until today but wondered if I will be able to run (aka wear a sports bra) while on rads. Besides that I REALLY can't go to work without a bra on!

Oh well I can't even get upset anymore just gotta do what we gotta do I guess. I know you guys understand. I feel like my friends really don't get all of what we go thru. I think in some ways because I have not had a huge problem with side effects that they think this is no big deal...

LRM216 · August 2009

Lori - sports bras are what you should be wearing during rads. I got some cheapies, but comfortable ones at Walmart as they hook in the front and aren't as tight as the ones that go over the head. I think they may be Hanes, not sure. They are not attractive, and don't do much for the bustline, but I don't even care anymore, I wear them all the time as they are the most comfortable things I could put on. Sent all my old expensive bras out to pasture - especially now that I have one smaller breast anyway! I'm not doing rads until 4 wks after the chemo ends (2 more to go), so you will beat me there, but good luck and keep on posting.

Linda

jaelsne · August 2009

Hi Lori

I got a really really comfortable sports bra from a lingerie shop that specializes in mastectomies. It's not for people with mastectomies, just post surgery and such. Mine fastens in front, making it easy to put on and take off. Just an idea!

Jo Anne

debbie6122 · August 2009

Hello may marvels, i havnt checked in, in awhile but have been reading the posts, i hope every one is having minimal 'SE,

Linda- Sorry about the bone pain,(hugsssssssss)

Lori- i know what you mean, i have a pimple on my nose, i never even get them, plus tonight im laying against my bed post kind of slumped down with my wool beanie i had on ( ugly, but keeps my head warm) it was kind of half on and half off, my hubby comes in and laughs at me, i said what?? hes like ,you look like a drunken sailor!! Well thanks hon, i already feel so attractive LOL! but just remember this is just temporary we will all get back to our beautiful self!!!!

Kelly2 · August 2009

I have been so bad about checking in but I read posts today to try to catch up. I finished my
A/C treatments a couple of weeks ago and was so happy but had an ordeal with insurance over my neulasta shots. they have finally decided to pay for them. My onc. said he wouldn't give me my chemo without the neulasta shots since my WBC's went dangerously low after my first A/C. After reading your posts, I am wondering if he will continue the neulast shots when I start Taxol. I am glad to read that you all find Taxol to be better than A/C for I was always nauseated and vomiting no matter what anti-nausea meds I was on. Neulasta shots is what got me down for a few days so would be nice to skip that too. I start Taxol and Herceptin next week and I will be taking them every 3 weeks. I see many are on weekly or every 2 weeks. I dont' know why I will be on every 3 weeks. A/C didnt' really make me tired but was down for about 4 days then I would have a good 2 weeks where I didnt' even feel like I had cancer except when I saw my poor bald head in the mirror. lol. Good luck to you all in going to different treatments--some on rads and others on Taxol, etc. We will be done before we know it. thanks for all your input.

lassie11 · August 2009

Kelly2 - I hope you are right that we "will be done before we know it"! This morning I started the steroids that precede the taxotere treatment scheduled for tomorrow. I sure hope it goes ahead as scheduled - have not been able to have blood work as my PICC line is not doing its thing properly. Apparently there are ways to fix it at the hospital that are not available to the home visiting nurse. If all goes well tomorrow, I can say - three more weeks til the last treatment - yahoo!! Now to laundry and other domestic things that will make the next week easier.

LRM216 · August 2009

No Kelly, no Neulasta with Taxol. That's the good news! It doesn't suppress the bone marrow as the AC and Taxotere does. I had to switch from the taxol to the taxotere due to neuropathy, but not I also have to get the dreaded Neulasta shots too. I hate that. Good luck to you.

Linda

TomnDi · August 2009

Kelly2 - Our insurance wouldn't pay for Neulasta either. However, our onc mentioned that they could give Diane the Neulasta as part of her IV and insurance WOULD pay for it. It's more expensive but since it's part of the IV drip and not a "high cost injection," it was covered. Go figure. If you're going to need the Neulasta for Taxol, check to see if it can be part of your IV and if the insurance will cover it.

Diane is feeling the effects of tx#4 of A/C but still doing amazingly well. Drove four hours north to Idaho Falls to attend a family wedding. Wonderful time but just a bit taxing on my sweet wife. It was the first time her extended family was able to see her since she was diagnosed, since she lost her hair. Very few comments or stares made her feel just a bit better. Taxol starts on the 13th. Watching and waiting.

Tom n Di

jaelsne · August 2009

I've been having affairs almost every night! Last night it was with my telephone repairman, Glen Campbell! Never mind that he's 73, he looked good.

Truly, I've been having lots of dreams about falling in love with various stars--and they're attracted to me. I think it's because, as I describe to my dh, I'm a "bald-headed, one-boobed woman missing a tooth." These dreams must serve the purpose to make me feel sexy and desirable.

Anyone else have similar experiences?

Jo Anne

lassie11 · August 2009

Jo Anne - nope - no such dreams - but I think they are an excellent idea and will see if the dream factory can produce some like that for me.

zuzeee · August 2009

Hi Marvels

I just posted this very long newsy chat to cyberspace and lost it!!!!!! No corrections this time. Am ok, doing a lot of ranting and raving on Facebook!! Had tatoos yesterday it hurt!! No anaasthetic. Have to leave home for 4 nites a week to do rads as it is too far to travel, could be fun but will miss my own bed, family and dogs, Told them to double dose me as I have an important golf tournament on Oct 1,2,3 so I am not going to be at rads. Have become very assertive with folks and now call a shovel a b&&&& spade.!! Tolerate no nonsense from anyone, must be steroid rage but I am coping. Is anyone else feeling less tolerant of the world and people? Very dry mouth from chemo 4 and have drunk litres of water. Very tired of all the drama and yuk feeling with this AC treatment, sooooo pleased it is over. Rads start in a month and I will be here still.

Lots huge pink hugs to all. Titch gets her op today so send her your thoughts, Susie

Any May 2009 Chemo Starters?

Comments

Categories