Has anyone started a Dec 2011 group?

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  • maryhope
    maryhope Member Posts: 15
    edited December 2011

    3monstmama, welcome! I'm here to learn..you know and understand are fears. You are apart of our sisterhood, because you have been were we are. Now you have to relive it with your Mom...



    Hello Laurieloomis! I'm right with you, and will be holding you hand through all this mess we are in.



    Everyone here well be in my heart today, cant wait to check in on you stronge women tonight!



    I've been looking and feeling my hair a lot more then I ever did, that is a hard one!!



    Mary hope for all!

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  • RachelsLife
    RachelsLife Member Posts: 16
    edited December 2011

    Hi all - I've been lurking for a while but just got my 1st chemo date - 28 Dec - so I thought I'd join. I'm doing "dense dose TAC" - anyone else doing that? Would love to hear specifics from someone with same treatment, though I know SEs vary alot person to person.

    Also, I'm 38 and have 4 kids ages 8, 7, 5, and 1 - I took the 3 older ones with me to a wig shop to help pick out a wig - that seemed to help take the fear out of it a little (they begged me to get a brightly colored one - which I did order on-line for special occasions :). I'm hoping they are still OK when I actually start losing my hair - I have some books ready, but any other advice on how to help them through would be appreciated!

     Rachel

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  • markat
    markat Member Posts: 909
    edited December 2011

    Hi Rachel! That's awesome about shopping with your kids! I would order a fun wig if my head wasn't so huge.

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  • maryhope
    maryhope Member Posts: 15
    edited December 2011

    Rachels, dlm217, rcm, Laurieloomis, and any other who are starting chemo at the end of this month... I was wondering if some of us who are newbies, do you think we should start a Jan 2012 site...I'm sure the girls who started early Dec do not want to relive what they just went through! I know we have all been reading and learning from these sweet ladies..I feel we are a bite inturding...We could start are new site when we start our treatment...what do u think?

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  • capinva
    capinva Member Posts: 138
    edited December 2011

    Secretgarden - I got a rash and my hands swelled up from the taxotere but the reaction came 7 days after infusion which concerned the doctors. The doctor told me yesterday when I reminded him that the reaction was 7 days later that he is concerned that I had a reaction to the taxotere and not the chemical molecule that most people have reactions with. I am glad he is giving me a low dose with Taxol even if it means having to do 12 weeks instead of 4 treatments.



    MaryHope I just turned 51 and my childen are still at home, one in college, one working. They have been a big help when I don't feel up to doing housework or cooking. Ladies if someone offers to help you by bringing meals or cleaning or watching your children, take them up on it. Unfortunately the chemo is a cumulative effect and by the end of the teatments you will probably feel really, really tired. But you will get thru it and move on to the next phase. You can do this, Everyone is strong and you can get thru this.



    Praying for minimal SE for everyone

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  • naan1004
    naan1004 Member Posts: 520
    edited December 2011

    Thanks Markat, i hope so too

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  • naan1004
    naan1004 Member Posts: 520
    edited December 2011

    Rachel, i told my kids teachers at school, so that they keep an eye out on any changes in the kids behavior, which may require counseling.  The teachers were so supportive and reassuring, u may want to let them know or any other caregivers they have, daycare...  My oldest daughter's 3rd grade teacher even provided a phone parent conference, since I was in the middle of chemo during her conference date and reassured me that she was doing well and sent her report card ahead of the other students, so that I was able to see for myself how she was doing.  I haven't talked to the counselor at the school yet, but when the time comes that they may need counseling, I will probably contact them too. 

    Back from my second session of AC, doing ok so far, but will see.

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  • laurieloomis
    laurieloomis Member Posts: 43
    edited December 2011

    Hi MaryHope...I think your idea of doing a Jan 2012 thread is a great idea...we are starting a few weeks/months later than others, and it would be good to share our miserys, fears and accomplishments.  I am also very greatfully for all their wisdom, experiences, and encouragement. 

    Take care all

    Laurie 

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  • Mardibra
    Mardibra Member Posts: 1,111
    edited December 2011

    Rachel'slife - I'm on the same plan as you but in a different order...dose dense AC every two weeks for 4 cycles and T foe four cycles. I've only had one tx so far and it was a mixed bag of SE's. No real nausea but very foggy head the first few days and incredibly tired and weak day 5, 6, and 7. After that I came back pretty quickly. Feel back to normal now just in time for my next dose on Thursday. However the hair has started to fall! No big clumps yet but it's started. Curious to know what tomorrows shower experience will be. Not to be too graphic, but the "nether region" is the first to go! It's not easy but it is doable. You will be just fine!

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  • momof3boys
    momof3boys Member Posts: 896
    edited December 2011

    Hi Everyone

    Just jumping in here, feeling like I know nothing....everything happened so quickly! Diagnosed mid-October, did lots of research and got lots of opinions. Decided on a bilateral mastectomy with immediate reconstruction. I have ILC, SNB was negative and Oncotype is 16 (just got that back). Before surgery the doctors (3) consensus was to do chemo, now, they're "split" because of the 16 score (10 w 5 years of Tamoxifin). My oncologist, whom I love (she's young, really smart, specializes in BC because her mom had it 16 years ago, still doing fine),said that she'd do the chemo...

    So, I'm going to do it., Starting the week between Christmas and New Years (woo hoo). She said:

    TC 4x...

    What am I in for? I'm 43, otherwise healthy, used to exercising, not overweight, she said it's very important NOT to gain weight during chemo. I'm 5'7 and weigh 153, didn't lose one pound during surgery and 4 days in hospital... How could that be? Breasts had to weigh something?!?! So unfair.,

    So, I'm nervous, because she emphasized this... And exercise, and said that she was sure I'd be fine and it's only 12 weeks,

    Any tips? Please?

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  • rachelvk
    rachelvk Member Posts: 1,411
    edited December 2011

    Thanks for the well-wishes today.

    I'm a little tired now and will be heading to bed shortly. But my tx breezed through great. No rx to any of the three. I really like the infusion center. I had an individual cubicle (though it might have been nice to meet some of the others there), so my mom, boyfriend and I could talk or just do whatever. I really, really like the nurse, as well as my onc and the nurse in the onc office. That's always such a great thing.

    I did ice my fingers and toes to stave off nail damage and possibly neuropathy... hope it works. I didn't do the gel caps, though. I'm resigned to losing my hair. 

    After my tx, I had my mom drive me over to a pub where some of my friends were getting together. I hadn't planned on going, but I felt fine, so I figured why not? Had a martini and a turkey burger, and good company. My stomach is, well, there... I suspect it's plotting something but not enough to take the Zofran just yet.

    I've been reading the other posts, but will catch up later, hopefully. 

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  • seacretgardn
    seacretgardn Member Posts: 269
    edited December 2011

    Rachelvk, so good to hear your first tx went so smoothly! Hoping the next days to come hold the same for you, and that icing your fingers and toes helps. Did your onc mention taking any supplements to help avoid the neuropathy?



    Mom of 3boys, I only wish I had the knowledge going in that you possess. Sounds like you've been very thorough.



    Of utmost concern to me is my weight, I'm most likely older (53) and quite a bit heavier than you. So of course am receiving a much higher dose of drugs than an average weight woman. I'm told my body would distribute it evenly, but I've always been sensitive to meds.



    Doesnt sound like you've had weight issues in the past, no reason why you should now. My onc stressed this to me, also wants me to actively lose after tx, and to be mindful that steroids can increase the appetite, and slight nausea can sometimes cause more "grazing".



    How are you feeling post reconstruction?



    I'm sure you soon hear from other ladies who are receiving the same tx. Wonderful group.



    I wish you all the best.







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  • rachelvk
    rachelvk Member Posts: 1,411
    edited December 2011

    seacretgardn - I asked about the supplements, but the only one she recommended was B6, which I take anyway. But she did say to call the moment I feel any tingling. She switched my regime to taxotere from taxol, which has higher risk of neuropathy, because I fence and play violin. So at least she seems to respond to me as an individual and not just a case with xyz cancer.

    Slept fine (with extra bathroom trips since I'm drinking so much). About to have some oatmeal, and just took my Emend and Decadron, so hopefully they'll do their job. I also wore my seabands to reduce nausea yesterday, but when I got ready for bed, I realized that maybe I shouldn't wear it on my right arm, which is my SNB side. Shoot! So far so good - they warn against wearing even a watch on that arm, and I go and put a constricting band around my wrist. Hopefully things will be okay. 

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  • rcm
    rcm Member Posts: 9
    edited December 2011

    Okay, so today I am a total disaster.  Yesterday was long, had a friend there to take notes so my hubby and I could mentally check in and out if we needed to.  Turns out they found another tumor, but they couldn't tell if it was attached to the first one or not.  Anyway, that left me with a bit of uncertainty about staging, treatment, etc.  So furstrating.  I left with the idea that my surgery for my port would be Tuesday of next week, but most likely, if I were a candiate for the clinical trial, wouldn't start chemo until after christmas.  Shortly after i got home they called and said they were 2 separate tumors and chemo will start next week.  I just felt so blind sided.  I just can't believe this is all really happening.  My 3 year old told me this morning that she wants me to keep my hair.  You all seem so amazing that you were able to have parties and shave your heads, take your kids wig shopping...I feel like an emotional wreck!!!  How can I pull it together quickly so I can prepare them for this???  I guess today is my pity party because all I want to do is cry!!!! 

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  • momof3boys
    momof3boys Member Posts: 896
    edited December 2011

    Actually, in the months before being diagnosed, I lost 30 lbs on the Dukan Diet, and it was a struggle. I definitely do not want to regain any weight, as I feel so much bettet and have so much more energy at 153 as opposed to the heavier weight. So, I'm concerned with that and that the oncologist stressed that women that don't gain weight, have better outcomes....

    She did say (and she's very naturally thin) that chemo does have a tendency to make you gain a little bit of weight, but alot of women, over eat in the weeks between treatment, anticipating that they are going to be sick and lose weight in the week after treatment, and they (her patients) don't end up being as physically sick as they feared.  So, she said to be aware of that.

    I've prepared my kids about my hair loss..... (three boys: 7,9 &16).  I've reassured them that the cancer is not going to cause me to lose my hair, but the medicine that will help make the cancer not come back will make me lose my hair, that was reassuring to them).  I also made them all laugh when I suggested that they shave their heads in support of me....hahaha! They all said, that's ok, but, we're not doing that! (They all have buzz cuts anyway)

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  • markat
    markat Member Posts: 909
    edited December 2011

    Rcm have they given you a prescription for a nerve pill yet? If not I would call your onc and ask for one. It has been a saving grace for me during this.

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  • momof3boys
    momof3boys Member Posts: 896
    edited December 2011

    I'm feeling about 90% after double mastectomy and reconstruction.  I wake up achey in the morning, and feel better the more I move around. I've been going to the PS two times a week to get the expanders filled. That is not painful, by the way, I do not feel that needle going in and close my eyes for it...a few hours later, I feel slight pressure (kinda like when your milk comes in after having a baby, but not nearly as uncomfortable).

    I still get tired every few hours, but, I'm functioning and doing most everything I did before: taking care of the boys, laundry, decorating for Christmas, shopping, working from home mostly (I own a business, and have wonderful associates "covering" my role there).

    I'm nervous about starting chemo, of course, not looking forward to the tiredness, aches and pains I keep hearing about, and the nausea.  The hair loss I can deal with.  I actually am in a stage where I "like" my hair right now, unfortunately, but, at 43.....I'm no longer concerned with what others think or if they stare. So, I'm "ok" with that (hopefully).

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  • rcm
    rcm Member Posts: 9
    edited December 2011

    markat, they gave me valium before all of my testing on Friday.  I took a half of a pill yesterday, but am afraid to take a whole one.  I need to drive, take care of 3 kids, etc.  I just called and spoke to my nurse.  I asked her if there is anything else they can give me.  Having stinging pains in my chest and can't catch a full breath.  Total anxiety.

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  • markat
    markat Member Posts: 909
    edited December 2011

    Yeah that's panic. I take .5 of ativan in the morning as needed. I can still take the kids to school and everything. It just takes the edge off.

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  • momof3boys
    momof3boys Member Posts: 896
    edited December 2011

    When this began for me, I had alot of anxiety.  My Dr. prescribed Ativan.  It definitely helped with the anxiety, and I was still able to function (work, taking care of 3 boys, etc).  It just took the edge off and allowed me to think calmly and to not panic.

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  • Peacock
    Peacock Member Posts: 86
    edited December 2011

    Ativan is also an anti nausea med, as a bonus. It's very helpful and you can function normally but better with it. It also helps at night.

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited December 2011

    jumping in to comment on MaryHope's idea of starting a second December group for late December, I don't think its necessary.  When I was doing rads, we stuck together as one March group.  The benefit was that those who had gone earlier had more knowledge about what to expect which was a big benefit to those who started later in the month.  I never minded retelling someone what to expect or doing some handholding--figured thats what the group was there for and made me feel I was paying forward all the support I had received when I was at the panicky stage.

    My March 2010 group still keeps track of each other.

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  • Peacock
    Peacock Member Posts: 86
    edited December 2011

    Momof3, I gained weight in the hospital too, despite eating almost nothing there. i have to think those bags of fluid were to blame...right :)  But I admit that 10 days on the couch afterwards were all me, eating comfort food, and wearing sweats.

     I started chemo and am also hoping for minimal weight change.

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited December 2011

    rcm - I agree about the Ativan.  I have never been one to take pills for anything but that little tiny pill has been my savior!  I have 2 girls, one is 24 and the other is 18 and in college.  I also have 2 stepkids, 16 and 12.  I know this is totally overwhelming and scary right now, but if I can do it, you can do it!  I just laugh when people tell me how inspiring I am or how strong I am....like I have any choice in the matter.  I'm doing nothing but surviving.  Don't stress too much over the first chemo treatment, it's nothing like what you imagine and if you are proactive you can prevent alot of the SE's.  The women on this site have been my strength...big HUGS to you, you can do it!

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  • laurieloomis
    laurieloomis Member Posts: 43
    edited December 2011

    I'm going to my "chemo teach" this afternnon..all your posts have helped so much to know what to expect and I think this class will teach me more about A/C.  I'll let you all know how it went and any insight I get.

    Laurie

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  • FLislander
    FLislander Member Posts: 243
    edited December 2011

    Hi Josie

    I too just turned 40 this month, and have 2 children 7 and9 yr. What a birthday, I heard it sucked turning 40 but this was a surprise. Not as bad as I thought, not by any chance easy. Im learning how to combat all the SE . My latest finding is mixing yogurt and a glutamine and acidophilus capsule with milk for a smoothie. They say glutamine helps heal digestive track and mouth sores. When I forget for a day or two I can tell a big difference with mouth and esophagus.

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  • FLislander
    FLislander Member Posts: 243
    edited December 2011

    Hi Josie

    I too just turned 40 this month, and have 2 children 7 and9 yr. What a birthday, I heard it sucked turning 40 but this was a surprise. Not as bad as I thought, not by any chance easy. Im learning how to combat all the SE . My latest finding is mixing yogurt and a glutamine and acidophilus capsule with milk for a smoothie. They say glutamine helps heal digestive track and mouth sores. When I forget for a day or two I can tell a big difference with mouth and esophagus.

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited December 2011

    We took mom to chemo teach yesterday. The only thing I can re-emphasize is that they said don't let yourself get nauseated--TAKE THE DRUGS!!! mind you the all caps is directed at mom, not the rest of you. Oh and also, be sure to drink even when it tastes blech as that helps with the process and to get exercise every day even if you walk around the block and come home and take a nap.



    Last "pointer" from my boss. He had chemo last year and said that after a couple of days on what he calls the "good stuff" for the nausea, his doctor switched him to something else which was less expensive. According to him, that was the worst part of the whole chemo--the 48 hours on that med before they switched him back to the "good stuff." He said that had he known the reason at the time, he would have fought it, even if he had to pay for it himself. So if they try to switch your antinausea drugs, find out why and don't just agree to it.



    If you get mouth sores, manuka honey works wonders, at least it does on radiation. Can't imagine it wouldn't work just as well with chemo mouth.

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  • RachelsLife
    RachelsLife Member Posts: 16
    edited December 2011

    I really appreciate the welcome and tips! This is going to be a crazy ride (already has been, with all the tests and BMX/axillary dissection to date...) and I really love having such a great group to share the ups and downs!!

    I've been taking notes from all your experiences - which is helping me develop a list of questions to ask when I go to "chemo class" next week. I'm hoping by being informed I can do as much as possible to mitigate SEs.

    rcm - my 5 yr old had a similar reaction to me losing my hair, but he seemed to understand when I explained that it was from strong medicine that was keeping me healthy. Of course, I haven't started to actually lose my hair yet - we'll see if things change. But so far, my kids are able to joke about it - they loved the colorful wig I found on-line for $9.99 (I'll consider that my house hair :)..,

    Rachel

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  • rcm
    rcm Member Posts: 9
    edited December 2011

    I just got a prescription for xanax.  I have never taken anything like this before, but feeling pretty desperate.  Was a tough day today, but off to see my kids in their school concert this evening.  Haven't been able to talk or figure out the whole wig thing yet.  I guess maybe that will be this weekend.  It's hard not to get freaked out about chemo...let's face it...none of these side effects sound that great or pumping my body full of meds to stop them.  Blah!  Anyway, today is just my down day and I am hoping to feel better tomorrow and be ready to push forward.  

    My chemo class is Friday so hopefully I will learn more about what to expect.  Rachel, I think it is really different when the kids "see" it happen.  It's one thing to talk about it, but to see it makes it real.  I just pray they take it ok.  I already own lots of funny wigs because I love to dress up for Halloween and make people laugh...my favorite is the mullet.  It's hilarious!  Anyway, just having a hard time overlapping Funny Tricia with Cancer Tricia...I feel so trapped in a blck hole.  God, I hope these meds kick in soon!  

    Thank you for your support...I'm really not a grumpy person Undecided 

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