Starting Chemo May 2008

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  • drcrisc
    drcrisc Member Posts: 836
    edited April 2008

    Lorena,

    Thanks for the comment about kids.  My 8 y.o. dd is becoming adjusted to that possibility.  I cut my hair short yesterday, just to pre-empt things.  She DID NOT like that at first, but then adjusted as the day went on.  She was also looking online with me at hats, scarves, wigs, etc. the other day and seemed interested in helping.  The 4 y.o. doesn't really know what's happening at all. 

    I've been told that if I do the CMF route, hair loss isn't a given.  Usually thinning, but not necessarily complete loss.  Although too much thinning can be weird, too.  Surprised

    Still not sure which one to do - the CMF or T/C.  I need more info.

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  • otter
    otter Member Posts: 6,099
    edited April 2008

    drcrisc/Christine,

    I am not a doc, so this advice is worth what it costs (and I haven't slept in a Holiday Inn Express lately).  I'm kind of surprised that you are being offered CMF as an option, considering your triple-negative tumor and the fact that you are young.  Generally, young women are given more aggressive treatment, because their tumors tend to be more aggressive and they have more years of life to conserve.  That's why "older" women might be offered only CMF.  (That's not entirely true; there are quite a few women here on the BCO boards who are in their 60's and are on big-guns chemo regimens.  Is 60 old?)

    Anyway, a triple-negative tumor can't be fought with estrogen blockers like Tamoxifen or AI's.  After surgery, chemo is all you can do.  Did your onco quote you a recurrence risk, with and without chemo?  The CMF is considered a "first-generation" chemo regimen; the two onco's I consulted don't even use it anymore.  I think it's more effective on triple-negative tumors than on ER+ tumors, for sure; but I would certainly think about using something stronger if I were you, especially considering your age and your family situation.

    That's quite a range of choices you've been given. See if you can get some numbers to tell you the likelihood of recurrence with the different options. There is an on-line calculator (AdjuvantOnline) that some oncos use to make those predictions.  If you'll disclose your age here, we can enter the data and let you know what it says.

    otter 

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  • mpellot2004
    mpellot2004 Member Posts: 21
    edited April 2008

    hugs to all!

    I tried on wigs tonight.....some really pretty ones...BUT ITCHY!  I think Ill end up with one but apt for the scarves and hats.  This summer and wearing that itchy thing are not going to cut it. 

    robink-zofran is great but seriously ask about the Emend.  Im an RN as well. Im hoping to do as much phone work as possible.  We were in the midst of building a house when I was dx'd so not working isnt a great option right now...uggh.  People have offered to donate leave....I dont even know them...its amazing.

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  • lanihardage
    lanihardage Member Posts: 190
    edited April 2008

    Thanks, Robin. I have a partner who is determined to do whatever we need, and some friends who helped out when I was recovering from my mastectomy. It's hard to know how much I'll need until I'm there! Lauren, thanks for sharing your recent experiences with your kids. I'm already freaked out about my hair, and looking at hats was a cheering experience.

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  • corkyandme
    corkyandme Member Posts: 12
    edited April 2008

    I am also starting chemo in May, having a port put in this week.

    Cytoxin, Taxotare, Herceptin, is what I was told.

    Regarding synthetic verses human, more open weave,and less weight, (cooler) with synthetic, Less maintenance, lots more styles too. Human hair is much much more expensive.

    The soft wig liner can eliminate that rough scratchy feeling,as well as absorb perspiration.

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  • robink
    robink Member Posts: 336
    edited April 2008

    Hello Corky,

    Welcome to this thread.  I hope you are holding up with what's ahead of you.  My 1st treatment will be Thursday, May 1.  Already have my port and will be given Taxotere and Cytoxin.  Can't say I'm looking forward to it but I want this behind me so I am ready to proceed.  There is a T/C thread you might check into.

    Keep in touch as your treatment moves forward...

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  • rock
    rock Member Posts: 1,486
    edited April 2008

    first post. 

    i have appt on wed, 4/30, with med oncologist, appt w/ radiologist on 5/9, and gene counselor on 5/6.  met with another med oncol @ another hospital about 2 weeks ago so have some idea what to expect (got a 2nd opinion on chemo before the first; i didn't want to wait until 4/30 to get a sense of what I might expect!).

    i'm 42, w/ micromet to lymph nodes which can be staged as either T1No(mic) or T1N1(i+).  my surgeon and one med onc lead me to expect a dose-dense course of ACT. but am learning to make peace with the unexpected.

    happily single and living alone in NYC (a very bald-friendly town), no kids, great friends, great family, understanding job, great doctors.  

    so far, holding up pretty darned well.  am trying to get organized (family and many friends live far away). for some reason, though, i'm channeling my anxiety into thinking about life without eyebrows. how silly is THAT?! 

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited April 2008

    Welcome Rocket,

    I'm so glad you found this site. I told I could be starting chemo in may. Haven't received the dates just yet nor the cocktail. The Oncologists are awaiting my decision on when to start. We have a rather large extended family vacation scheduled for early June and they said I could postpone treatment until I return if I wish. I'm recovering from my mastectomy and tissue expander and hope to start Chemo in 3-4 weeks. I'm so glad I found this thread. I've met some great friends on this site. I was just looking at wigs. Where do you start?



    Roxi

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  • The_Other_Half
    The_Other_Half Member Posts: 2
    edited April 2008

    Hello ladies,

    I trust you will accept the participation of a distressed but empathetic husband in this room.  If not then I will not bother you again.

    My dear wife of 16 years was diagnosed with early breast cancer in February of this year. Sanji is 41. The surgical oncologist recommended a lumpectomy to remove the 20mm malignant tumour. We followed his advice. The operation was performed on 3rd of March. Two primary lymph nodes were also removed. The breast wound was not painful, the armpit was. Ten days later we expected to receive the all clear - 6 weeks of daily radiotherapy to protect the breast, problem gone.

    Not so! The pathological report showed that whilst the lymph nodes were clear, the cancer was grade 3 (had grown to 40mm in 2 weeks), was ER+, PR+, HER2+. Back under the knife on 17th March for a complete mastecomy. We were both shattered.

    Sanji had never cut her hair. We bit the bullet and had her hair cut very short on 7th April. The hairdresser plaited her hair, then gave me the scissors to "cut the umbilical cord, the beginning of a new life". We purchased a synthetic wig, shoulder length, similar colour for $575. We were prepared!?

    Chemo started today (28th April). Eight cycles at 3 weekly intervals of "Doxorubican" and "Cyclophosphamide". This is to be followed up with 18 cycles at 3 weekly intervals of "Herceptin", followed by 5 years of hormone therapy.

    I am a fiercely protective and supportive husband, but feel as if my arms and legs have been amputated.

    How do your husbands/partners cope?

    I trust ALL of you are posting five or ten years hence.

    Best wishes from Australia.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited April 2008

    Hi Other Half and welcome,

    My husband is coping pretty well- he had a hard time at first trying to be optimistic that all we would need was a lumpectomy- which very quickly became out of the question and I had to have a mastectomy. I think it really helped him to go to the doctors appointments and ask all his questions because now he understands the big battle and is not so stressed over the hair and other treatment stuff- he is concentrating on the big war. He has become VERY protective and nurturing toward me which is really nice and also very complimentary- its hard for me to understand how he can find this stage attractive and sexy but I really think he does- he has gone out of his way to pick out the positive in everything (its easier to kiss my nexk with the short hair LOL).

    Hang in there and just vent when you need to - this is definitely not a one person disease- it takes in the spouses, kids, parents etc .

    Kristy

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  • EyesOTex
    EyesOTex Member Posts: 194
    edited April 2008

    Hi y'all,

    I'll be starting chemo May 2.  I have been in so much shock I haven't updated my profile or anything, but I have already done the A/C/T.  I never joined the chemo group for that treatment (July 2006) but I wish I had.  Now I will be starting Cisplatin and Gemzar, 1 dose every 8 days or every 12 days depending on how I tolerate it, for about 16 weeks.  After that, I think he said...oh, I can't remember; something that's a pill.  I'm not finding much info on these. 

    To whoever was triple negative....if cisplatin was one of your choices, or carboplatin, along with that CTC, I'd definitely go for that over the CMF,  but I'm not a doctor either.  I, too, am surprised that CMF was recommended for you.  If you haven't visited the triple negative forum, you might ask on it.

    Good luck to us all, ladies and gentlemen!

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  • familyroks
    familyroks Member Posts: 575
    edited April 2008

    The Other Half - of course you are welcome to participate!  I would just like to say that it sounds like your wife is very lucky to have you.

    I start Chemo on May 7th.  My husband has been awesome.  We too were both devastated by having to make the decision to do the mastectomy but we both realized that it was for the best.  We were hoping to avoid chemo but again realize (once the facts were presented to us) that it is also for the best.  We've made all of our decisions together and he has been with me at every appointment.  I know he is scared, angry, disappointed and super worried.  We both are.  We talk alot!  This week we are going to get the book Breast Cancer Husband, written by Marc Silver.  I hope it helps my husband as we take this journey together.  I know that we are just at the beginning of this whole process but we have strong faith and love in each other and I trust that will be the biggest key in helping us both cope.

    I too cut my hair short, just this last Friday.  I'm hoping it will ease the shock to both of us as it starts to come out.

    Hang in there.

    ~Adrienne

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited April 2008

    Dear Other Half,

    Welcome to a great group. Today my husband was home to receive the final pathological report from the surgeon. My mastectomy was last week and we we're waiting for the final path report. I had two areas of DCIS as well as the one grade 3, small tumor. The mastectomy was totally our decision and both my husband and I are glad we made the decision. Even though all margins came back clear and all the cancer has been caught, just knowing that we can share the rest of lives together with the smallest chance of it returning is a true blessing. Life is full of challenges and together you will make it through. My husband and I have been married 23 years and have raised two beautiful daughters. This may be one of the most difficult roads we've traveled together, but having him there for the ride has made the journey much easier. Keep your faith and love and live your life to the fullest! Hope to hear more of you both...



    Roxi

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  • drcrisc
    drcrisc Member Posts: 836
    edited April 2008

    Hi All,

    I haven't been ignoring anyone - just away for the weekend.  My oldest dd had a gymnastics competition up in northern CA, so we made it a long weekend and visited my aunt as well.  I was so glad to be able to go with her, my other dd and mom.   The two of us also got to spend Saturday at a Discovery Kingdom which is a really neat amusement park - part zoo, part aquarium and part fast rides.Cool That was a much needed very special time with her. 

    Otter - thanks for weighing in on my dilemma.  I have been sort of figuring that out by reading some of the posts from the women on the CMF board.  I also know someone who had that treatment 7 years ago and the others meds sound newer...but also more intensive.   The doc quoted a 35% chance of recurrence without ANY chemo, but I don't know how the numbers would be different with the two choices.  I'm 40, will be 41 in two weeks.  I'd like to look that up.  He also said if I had had one positive node I wouldn't have had a choice (no CMF), which is making me lean toward the more aggressive tx also.  We discussed the issue of younger age = more aggressive tumor but only in terms of recurrence.  I feel like if I don't do the more aggressive tx and the cancer comes back, I know I will feel like I didn't do all that I could have.  So I think I have a decision.

    Welcome to all new comers!  It sounds like we are going to be together a long time, so the more the merrier!  Not really -  I don't wish this on anyone.  But I'm so glad to have a place where other know exactly what I'm feeling/going through.  I have a great network of supportive friends and family and if I ever need anything, there will probably be more people to help than I know what to do with.  But this support is necessary, too. 

    To The Other Half - You are certainly welcome, but I'm also wondering if there isn't a board for "other halves".  I know the first thing my husband did was to talk to his women friends at work (he's an RN, too) and he found 2 that had bc.  He asks them a lot of questions and I think that helps him.  He also goes with me to all my appointments and asks questions there as well.

    O.K., I have rambled on now and think I made up for being gone all weekend.  LOL.  Laughing

    Cristine

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  • robink
    robink Member Posts: 336
    edited April 2008

    Hello All,

    It must have been the time for haircuts - I had mine taken shorter last Friday.  Then on Saturday my daughter drove with me to a wig shop in Denver , almost had fun playing with some of the styles and I bought one, wore it around for the day just for kicks.  When I came home my dh thought I had done something different with my existing hair (styled and colored the shorter cut), could have pulled it off until a few of my unruly gray curls poked out from unde the wig.  A funny moment!

    Other Half , Roxi, EyeOTex, familyrox, and rocketthebald:

    WELCOME! There is a strength in sharing this journey with fellow travelers.

    My husband has been with me every step of the way, attending appointments, missing work, giving up days off to care for me, taking over household chores and holding it together fairly well.  I think he copes by doing the things I would ordinarily have done.  This gives him a great sense of purpose as we have gone through each segment of this adventure.  He is very private with his feeling and I think the book mentioned above, "Breast Cancer Husband" by Mark Silver would be beneficial.

    Today I don't feel so well, headache and scratchy throat.  DH had a cold and in spite of precautions I think I've picked it up.  Usually I take mega doses of Vitamin C and knock these things out in a few day.  But, at Chemo University I learned the chemo releases free radicals and the Vit C (an anti oxidant) combats free radicals so none is to be taken the week before and after chemo.  I've got through Thursday morning to beat this thing. 

     I don't believe in luck but believe in prayer!  So if you think of me send my name God's way.

    Blessings on your day

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  • LorenaB
    LorenaB Member Posts: 937
    edited April 2008

    Just popping in again from the March/April threads -- Cristine, I'm almost the same age as you (turned 41 in October) and my ex-H is also a nurse.  We are still good friends and he has come with me to several of my medical appointments.  It's nice to have someone in the family (sort of) who has a good understanding of medical issues, and can give me my Neulasta shots the day after treatment! 

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  • SanDeeLou
    SanDeeLou Member Posts: 96
    edited May 2008

    kristyAnn

    Hello, I live in a small ruraol are of Hardee County in southwest Florida.  I seemy onc on May 8th, so I am not sure I will be starting chemo.  After reading some of the comments on the other questions, I know so very very little about chemo.. Guess I'll be BURNING THE MIDNIGHT OIL! 

    LOL

    SanDeeLou

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  • robink
    robink Member Posts: 336
    edited May 2008

    SanDeeLou,

    There is a duplicate of this thread to with May chemo starters have been posting.  Come overthere with us.  I start May 1.

    ~~~perhaps the moderators can merge this two threads~~~

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  • eak2863
    eak2863 Member Posts: 31
    edited May 2008

    Hi KristyAnn, I will be starting chemo on May 5th. I will have 4 AC treatments every 2 weeks followed by 12 weeks of Taxol.

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  • eak2863
    eak2863 Member Posts: 31
    edited May 2008

    Hi robink,

    I am starting on May5th, and would like to be a part of the support group. We all need each other to make this 'experience' as painless as possible and make us all grow 6 month older in no time.

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  • robink
    robink Member Posts: 336
    edited May 2008

    welcome eak,

    I look forward to getting to know you.  Please come over the a duplicate thread where there are more May starters.  It was started by KristyAnn, same name, same date.  I've alerted the moderators and hope the threads can be merged so we are all working off the same one.

    Blessings

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  • robink
    robink Member Posts: 336
    edited April 2008

    Help....there is an idential thread started same day that is beginning to have new posts.  I am encouraging the newbies to join and post on this thread, have also contacted the moderators.  Other than that, any suggestions?

    Robin

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  • familyroks
    familyroks Member Posts: 575
    edited April 2008

    I noticed that this morning...kinda threw me off.  That is easy to do these days!

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  • familyroks
    familyroks Member Posts: 575
    edited May 2008

    Welcome Eak,

    As Robin said, there is another more active thread that is duplicate of this one.  Please do join that thread.  It looks like you and I will be pretty much on the exact same schedule for chemo.  I start May 7 (I just couldn't start May 5...its my birthday and just not the way I want to celebrate!).  I believe I too will be every 2 weeks first with 4 tx of AC followed by 12 of Taxol.  Oh joy!

    Tomorrow is my Chemo Education.  I'll know more then.

    ~Adrienne

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  • eak2863
    eak2863 Member Posts: 31
    edited April 2008

    Hi All,

    I am starting chemo on May 5th. I wil have 4 ACs every two weeks followed by 12 weeks of Taxol. 2 weeks ago I got a slylish haircut (like Katie Holmes). I know I have another 2-3 weeks to enjoy it. I did get a wig that is similar to my new hair cut. In addition to a wig, I bought new hats, and something similar to a wig but without a top part, something you can wear with a cap. I think I'll find it more usefull in the summer. Looking forward to chatting with you all and sharing the experience. I hope we all will have an easy 'ride' and grow toghether in the next 6 months.

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  • familyroks
    familyroks Member Posts: 575
    edited April 2008

    Welcome eak,

    I had responded to you in the other thread also.  It looks like you and I pretty much have the exact same chemo schedule, except I start the 7th.  I just cut my hair last Friday.  Looks like a common task for those of us facing chemo.  Haven't done the wig and hat shopping yet. 

    ~Adrienne

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited April 2008

    Ladies,

    You'll have to tell me where to shop for scarves and wigs. I've been looking online but not sure if I should buy human hair or synthetic. How long are we without hair anyways? I have no idea what to expect. My hair has always been short and my chemo won't start until the second week of May we're assuming. I see the Doctors next Monday who should release me to the Onc.



    Roxi

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  • eak2863
    eak2863 Member Posts: 31
    edited April 2008

    Hi Roxi. I did not want to buy a wig or hats via on-line. You really want to try it on and see if you like it. I am sure you can ask your oncologist or his nurse for a place where you can obtain it in your area. If there is a support group in your area, then you can ask other women for the list of stores. Good luck.

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  • Becky--IL
    Becky--IL Member Posts: 31
    edited April 2008

    Hello everyone,

    Roxi, I found a good site online called headcovers.com.  Large selection on hats, scarves, and tubins, etc.  The site is mainly for hair loss due to chemo. I ordered a few and was pleased with them. I started looking when I knew I would be needing chemo after surgery. Had surgery on april 16th, lumpectomy with axillary dissection. Go for first meet with oncologist May 8 about starting chemo treatments. Am nervous about the chemo and later radiation treatments. 

    Becky

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  • otter
    otter Member Posts: 6,099
    edited April 2008

    Roxi,

    I knew there were places you could buy scarves on-line, but I wasn't impressed with the colors I saw.  I shopped hard locally, but none of the clothing stores had anything appropriate for chemo-head.  Somewhere I read that the ideal chemo scarf is about 35 inches square.  With that much material, you can tuck the ends under, tie them together, or make a tail and drape it over your shoulder.  The typical head scarf is just 20 inches square.

    So, I went to WalMart and bought a whole bunch of 1-yard pieces of nice, lightweight cotton fabric.  I figured all I would need to do is cut the end off and hem the edges, and voila!  I would have a collection of scarves of any color I wanted.

    Of course, the fabric pieces are sitting on the table still in the sack, waiting to be unfolded and cut.  At least I dug my portable sewing machine out of the storeroom and set it up...

    In the meantime, I discovered that even the 20-inch scarves cover pretty well when you don't have hair.  I still have a fringe of bangs and a little bit of fuzzy hair on the sides and back (I'm not quite bald, even after 2 tx of Taxotere/Cytoxan).  So, a regular scarf like all the ones I saved from college will work most of the time.

    Be creative.  You'd be surprised what you can find at the discount stores sometimes. 

    otter 

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