Starting chemo Thursday, May 31 - June Group?

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Cmom, That is exactly how I feel, UGH! Today, is day three post chemo, and I feel better than I did last chemo. Yah! That said, I am in bed!

    Minnie, you are right. Being free of hair is liberating, and my wigs are nicer than my real hair!

    Having faith, before I buzzed my hair I too expected to find my hair in my pillow! I kept checking it....

    Cmom again, I was so vain before this. I thought people liked me because I had a nice outer appearance. I was so wrong. They liked me because of my kind eyes and smile which I still have. You have a pretty face. You will look great. I wonder if you can go blonde??? They even have wigs with highlights!

    I wish we all lived closer so we can all try on wigs together. When my doorbell rings, and it is a friend, I say excuse me, just let me put on my hair. I bought a gorgeous baseball hat with hair. My friend said I look like a teenager! It is so easy! I have a wig too. However, the hat with hair is easy and nice.

    I bought the lightest weight, most comfortable wig I can find. It is lace front with a see through scalp. I live in Florida and I was comfortable in it the last two days.

    Signed,

    Wig fan now!!!!





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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Wow, Pamelahope!  Your community looks beautiful. I would prefer living on the west coast because of its more relaxed lifestyle, but this is where I am at least until my kids graduate from high school.  We take Alligator Alley across to Naples every once in a while an just love it.  

    I am on day 10 of my first treatment.  I've had minimal SE and am hoping that continues, but am getting a little nervous as I get closer to round 2.  I have had some minor things.  My head felt like it was itchy/buzzing and I thought I would start seeing my hair fall out, but since I stopped using a flat iron, I see maybe one hair a day.  I get nueropathy minimally once in a while in my fingers and toes, but it just feels weird - doesn't stop me from doing anything.  Yesterday, I experienced pain in my jaw and my butt.  My husband wanted to cancel our dinner plans and I felt that if I stayed home, all I would do was think about it.  I needed a distraction.  We met some close friends and had a wonderful time.  I had a glass of wine (with permission from NP) and stopped feeling the pain quickly.

    I am also going to have radiation.  Yes, I'm scared, but will cross that bridge when I get there.  I can't think about it right now.  Just as with each step of this experience, I'm sure the anticipation will be the worst part.

    Also, I had my BMX and reconstruction  at the same time, prior to chemo.  I had small breasts my whole life.  I would never consider implants because I didn't want to look unnatural or have a foreign substance in my body.  When I was diagnosed, I decided that I would go for it.  I am considering it the silver lining on this otherwise dark cloud.  I hate my TE and can't wait until I can have my exchange, which has to wait until after chemo and rads., but when it's all over, I think I will be glad I have them.  My mother had an MX when she was 54 and never had reconstruction.  She had a second MX 2 years ago and is happy to be rid of it.  

    The hardest part of this whole journey was deciding on whether to have a lumpectomy and radiation (my BS recommendation) or BMX and reconstruction.  I keep hearing of more and more reoccurence and don't ever want to go through this again!!!  

    Wow, I sure did ramble.  I hope I answered your questions, Pamela!

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    Marcia1111- Just saw your post about the Neulasta shot.  There is an ongoing clinical trial for the usage of regular 24 hour Claritin for the bone pain from the Neulasta shot.  The dosage protocal under that clinical trial is --

    • Take one Claritin capsule/tablet (which is 10 mg of Loratadine) rally once daily for 7 days beginning the day of the administration of Neulasta.  (FYI- Neulasta contains Pegfilgrastim which is a myeloid growth factor that stimulates neutrophil precursors and can be used to decrease infection risk associated with neutropenia or low WBC count)

    Here is the website link: http://clinicaltrials.gov/ct2/show/NCT01311336

    I had my first Neulasta shot after my recent treatment #3 because I had an infection/fever 12 days after my #2 treatment.  I was still in the nadir period which is when the WBC is at its low point.  I took the Claritin the morning of my Neulasta shot and for 7 more days.   Fortunately, the Claritin must have worked since I haven't had any bone pain.

    Wishing everyone a good weekend and minimal side effects!!

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Thanks, Melrosemelrose!  I will look at that study.

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Melrose - How do you enter the study?  I sent an email to one of the doctors.  It would be so cool to help others by participating in a study for something I'm doing anyyway.

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  • jennifersomewhere
    jennifersomewhere Member Posts: 38
    edited June 2012

    Keep Moving- Welcome! For me the fatigue has come and gone.

    Pam- I am having a bilateral mastectomy after chemo and then after that I will be having radiation. I am concerned about it, but trying to focus on one step at a time. Yes, I plan to have reconstruction.

    Havingfaith- I agree about the fact that reconstruction is a very personal choice. There is no one right answer that fits for everyone. :)

    Marcia- So you are having some neuropathy... what chemo do you have right now? Are you on Taxol? I am doing AC right now and then after that I will be having Taxol and Herceptin. I am not having neuropathy right now, but I have heard it tends to come with Taxol.

    My hair started to come out a little bit on Thursday (day 14). My husband shaved his head in support of me and my brother shaved my head. My husband shaved his all the way, and I had my brother shave mine to about an 1/8 inch.  I am surprised at how well I am taking it. I am not upset about it at all! I don't like the wig, though. I think it will be mostly hats and scarves for me.

    Yesterday was my second infustion. I am a little bit nauseated but much better than the first few days after my first infusion. It is definately tolerable this time.

    Overall, I am in a pretty good place right now. I am not experiencing much depression so I am very happy about that.

    Many blessings to all of you! :)

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012
    jennifersmom - I am having Adriamycin and  Cytoxan every other week for 8 weeks and then Taxol every other week for 8 weeks.  The neuropathy is minor and doesn't really bother me.   Good luck with your chemo and surgeries.  
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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Marcia1111- Not sure how you can become a participant in the Neulasta/Claritin study.  I'm just taking the Neulasta to see if it would prevent/help with the bone pain.  The one clinical trial that I'm participating in now (Herceptin B-47)  is enough for right now.  Hope one of the doctors email you back soon!!!
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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Marcia,

    Thank you for answering my questions.

    I have never been to Naples but pre diagnosis we would drive to Ft. Myers for the day. I also love Captivate Island.

    It is nice to know I will have familiar faces going through radiation. Of course, I wish no one needed it...

    For the pain associated with Neulasta, I take a zyrtec the day of the shot and five days after. I have no pain.

    I feel better with infusion 2 then 1, maybe I am more prepared? Less scared.

    Jennifer, glad you are in a good place right now and the hair loss is not that bad for you. Your husband and brother are troopers!

    Melrose, Melrose, good to see you. Hope you are doing well!

    Pam

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012
    Melrosemelr… - I'm confused. My MO said the Neulasta shot was to increase the growth of white blood cells, which decrease as a result of the chemo.  According to her, the bone pain is a side effect of the Neulasta, not the chemo.
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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    Marcia- You have it right--- the bone pain is from the Neulasta shot.  Your WBC goes down because of the chemo.  Sorry if I confused you.....

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    pamelahope-Glad you did better with #2 round.  Round #4 is coming up for me which means I'll only have 2 more after that.  I may join you with the rads but that is yet to be determined.  My case has to go before the tumor board to determine if rads are in my future.  My cancer was found nice and neat inside a cystic structure which is a little unusual.  I'll keep you updated if I join you with the rads.

    Hope everyone has a great weekend and minimal side effects!Cool

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  • cmomof4
    cmomof4 Member Posts: 24
    edited June 2012

    Pam, you have a great attitude, and that will definitely get you through all of this!  I try to tell myself the same thing; "just keep a positive attitude."  Sometimes that's tough, especially when I really let myself sit and think.  I was initially staged at IIB, and I had accepted that and could work with it.  But when they told me (after my surgery pathology reports were back) that I am instead a stage IIIC, well, that was pretty tough.

    I think that once I start back to work (Monday) that will help.  Even though I start chemo on 6/21, keeping busy overall will help me.  I did take off from 6/20 - 6/24 just to be safe, since I don't know how I will react to chemo, or what SE's I will have. One of my sisters is also flying in to be with me for my first infusion (my partner will also be there, or course) so little sis and I are going to stay in a hotel and just chill out and see what happens. 

    She does want to go to lunch at "Sweetie Pie's" in St. Louis after chemo on 6/21 if I'm feeling up to it, so we'll see how that goes...

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Cmom4, My attitude is the only way out is through. I was in bed all day yesterday and will be today. I try to pretend it is like being pregnant for a year. When your body is not your own, and your nauseous and fatigued all the time. Then the year is up and you have new life. The treatment is rough. You can't think too far ahead. I can't believe this is my new reality....

    Cmom, you are right. When one thinks too much about it, fear has a way of coming in and taking over.

    I love the name Sweetie Pie's for a restaurant. I recommend going the day before chemo when you feel the best. You are lucky to have your sisters around...

    Pam

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  • ElleBee
    ElleBee Member Posts: 162
    edited June 2012

    Holy cow! You ladies have been busy posting.

    Right now I am writing you from the Outerbanks in NC. I am having a wonderful Father's Day sourrounded by the BEST men in the world! (My husband, Father-in-law, and brothers-in-law).

    My little girl also turned 9 today. Really? 9???

    Tomnorrow, fishing in the morning, hoping to pull in a variety of sea creatures. Also, some blue crab fishing with our trap. Tomorrow afternoon, my amazing husband is going to smoke 2 pork shoulders, pull it, and smother it in NC BBQ....wonderful vinegary goodness. Ordinarily I am mostly meat-free. But since my labs have shown that I am already anemic after one chemo treatment, I am upping the animal protein.

    So BRING ON THE BACON!!!!

    Please don't worry about me girls. I am fine, although a bit off the grid. I am glad to read that most of you are doing well.

    And my hair is pretty wonderful. I have NEVER had short hair in my lifetime (ok, there was that unfortunate Dorothy Hammill cut from the early 80's). So I am sort of eager to continue to have short hair for the next couple of years. It is heavenly.

    Love to you all! XOXO

    All my best... ElleBee

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  • ElleBee
    ElleBee Member Posts: 162
    edited June 2012

    Holy cow! You ladies have been busy posting.

    Right now I am writing you from the Outerbanks in NC. I am having a wonderful Father's Day sourrounded by the BEST men in the world! (My husband, Father-in-law, and brothers-in-law).

    My little girl also turned 9 today. Really? 9???

    Tomnorrow, fishing in the morning, hoping to pull in a variety of sea creatures. Also, some blue crab fishing with our trap. Tomorrow afternoon, my amazing husband is going to smoke 2 pork shoulders, pull it, and smother it in NC BBQ....wonderful vinegary goodness. Ordinarily I am mostly meat-free. But since my labs have shown that I am already anemic after one chemo treatment, I am upping the animal protein.

    So BRING ON THE BACON!!!!

    Please don't worry about me girls. I am fine, although a bit off the grid. I am glad to read that most of you are doing well.

    And my hair is pretty wonderful. I have NEVER had short hair in my lifetime (ok, there was that unfortunate Dorothy Hammill cut from the early 80's). So I am sort of eager to continue to have short hair for the next couple of years. It is heavenly.

    Love to you all! XOXO

    All my best... ElleBee

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Ellebee, We missed you! Your vacation sounds fabulous and Happy Birthday to your little girl. I love BBQ! Enjoy! I am happy you are enjoying your new haircut too. Pam

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    I started chemo June 12, Tues.  AC for 4 times then T for 4.  Today is day 6 and first time I have been able to even sit up.  I have so many people telling me they know people who worked full time, etc. etc.  So I was shocked to wake up the next morning totally beat.  I was expecting 48 before it hit.  I have great nausea meds, and infusion so have never felt sick at all, haven't even taken some of the presc. backups I have.  Not needed!

    I am 69, most people take me for about 60, very energetic and on top of things.  Used to swim laps a mile a couple of times a week, exer. bike, etc. etc.  my reaction to this has just surprised me I expected not to be so sick.

    I have heard.... the first 1-2 treatments are easier, reactions are worse furthr along...... I can't imagine it!! 

    I hope I don't sound "poor me", I am absolutely blessed..... just curious about my physical reactions.

    Stephanie

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    StephanieJM - I am on the same course as you, but I started on June 7th.   I'm so sorry to hear how it's hitting you.  I crashed on days 2 and 3, but have been pretty good sincce then.  Yesterday and today heartburn was an issue, but I took Gaviscon and feel better.  You sound like a very young 69 year old.  I hope you start to feel better soon.

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  • allisontom911
    allisontom911 Member Posts: 425
    edited June 2012

    Hi ladies,

    I go for tx #2 tomorrow of A/C. I hope my white count has recovered from last Monday otherwise tx will be delayed. I dont want a delay even thou I am not looking forward to tx at all.

    I hope I am not so sick for 6 days. My hair is shedding but still holding on. I lost it the first time on day 19 with TCH. It was fine until I washed it and OMG it was full of knotes. Couldnt even get conditioner to do anything. I filled a walmart bag with hair. I still had lots of hair so I just didnt touch it the rest of that weekend and on Monday I shaved it and got my wig.

    Hope everyone has a great week with no SE's!

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Stephanie,

    You are not the only one chemo is hitting hard. I am okay with the nausea. I like Emend better than zofran. However my stamina is gone. My infusion was Thursday and Saturday and Sunday I was in bed all day. This am I tried taking a shower but started blacking out trying to put my underwear back on. I am glad I buzzed my hair as their is no way I can do it. Previous to cancer, I was walking 5 miles a day and picking my 3 year old up from school in a bike trailer. I hope to achieve that level of fitness again. I would not be able to work during this.

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Allison,

    Hope you get infusion two. I bet you will. My wbc was low last Thursday but at infusion time it went up okay. Hope your side effects are minimal.

    Marcia, I am impressed by how well you are weathering chemo. Great! It shows how everyone reacts differently and one persons bad side effects will not be yours.

    Pam

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    pamelahope - I am also surprised and getting scared as infusion #2 is coming up on Thursday.  I wonder if I will be as lucky the second time.  One thing I have been doing that might be helping is drinking constantly.  The nurse suggested Gatorade or Powerade in addition to water for the electrolytes.  I think it has helped to flush the chemo out of my system.   A co-worker of mine had chemo and a BMX and reconstruction 3 years ago.  She said she took Percoset one day after surgery and Tylenol after that.   She said the only side effects she had from chemo were fatique and hair loss.  I had a lot more pain after surgery and felt dismayed that I had to take pain meds a lot longer than she did.  It made me think that I wouldn't tolerate chemo as well as she had.  Well, I'm happy to say, there doesn't seem to be a correlation!  I am also lucky that I am on summer vacation and my time is pretty much my own until August.  I have 2 teenage boys who are wonderful and my husband had been amazingly supportive and helpful through all of this.   I think it all combines to help make this journey easier. 

    I hope that you and everyone else I've been enjoying getting to know have a good day and minimal side effects!

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Marcia, For me infusion 2 was better than 1 so hopefully the same for you! If anything, I am so happy two is done and I just need two more A/C. I am hoping taxol is easier.

    My husband is being supportive too. He surprised me how much!!!!! Our relationship is closer now but I did not want it like this!!!

    I am glad you are on summer break. So much easier to get through chemo.

    My husband went to work today and my kids are in camp right in my development. I am in bed but getting up to pick up toys, light cleaning, dishwasher, and laundry. I am sure someday I will have a life beyond this bed!!!!!!! Ok, no more feeling sorry for myself. Time to pick up toys. I have an almost four year old and seven year old, both boys! Nice, that you have teenagers already. I started later...

    Pam

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    pamelahope - LOL!   I started later also, but I'm probably much older than you are!

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  • havingfaith
    havingfaith Member Posts: 93
    edited June 2012

    Marcia- I too will get my #2 infusion this week on Wednesday. The first one was a breeze for me, I just had a headache a couple of days. I also drink lots of water to help flush the chemo out. (about 100oz a day) I'm trying so hard to have positive thoughts about the second time around.  I need to work and my kids are very active with their swim team, competing every weekend. I hope I will be able to keep up with them.

    Pam- I'm sorry you where so tired. I hope that you are feeling better.  I bet that you will pick up your fitness level when you are done.  I hope to be that active when I'm done.  Iv always wanted to be an active walker but never found the time, but now I will. I wish we lived closer I'd go walking with you.

    Stephanie- Welcome, and I'm sorry that your not feeling that great. I do hope things get better!!!!

    Allison- Good luck with your #2 tx, one of my fears is that my tx will get delayed.  I just want it over with!!  I hope your wbc is good to go!!

    Ellebee- Your vacation sounds like a dream.  Enjoy!!  and Happy Birthday to your Daughter!!!!Cool

    Cmom- That must of been a shock when they changed your stage. I am so sorry. It sounds like you have wonderful support around you. Stay positive, it really helps!!  I was starving after my #1 tx so go enjoy your lunch. Try and eat a light breakfast before you go.  I think by keeping a little food in your stomach at all times is the trick.

    Everybody, Enjoy Your Day!!!

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    havingfaith - We are so similar in Dx, surgery, and chemo, right down to the timing.  It even sounds as though we are having similar reactions to the chemo.  Are you going to have to have radiation, as well?

    Marcia

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Havingfaith,

    Good to hear from you! Thank you for saying you would go walking with me. We are lucky we have such a nice group. I wish I could hang out with everyone here. I hope infusion 2 goes well too!

    Everybody else, I am thinking of you. If I don't mention your name each time, I am still thinking of you. I like everybody here! It really helps me feel less alone and sorry for myself.

    Pam

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  • havingfaith
    havingfaith Member Posts: 93
    edited June 2012

    Marcia- I'v been thinking about the nurse telling you to drink Gatorade.  This may sound silly, but I haven't gotten much help with the prevention of lymphedema.  My question is, have you been told to stay away from extra sodium to help prevent swelling? I would love to drink something other than water.  I tend to go on the caution side of life, and sometimes that ruins my fun. 

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    Good Morning from Oregon,

    Although it is just about noon.  I am really enjoying reading the posts.  Today is day 7 and I am definitely feeling better, combed my hair, put on lipstick and mascara...... first in a week!!

    I started having a burning stomach last night, I ate some popcorn, maybe shouldn't have.  I really crave salt, have lost about 4 lbs since infusion.  Drinking lots of water, Smart water..... might try some Gatorade.

    Today is our 52 anniversary,  I am so blessed..... honestly, trying not to be blue.

    Bless you each one. 

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