Starting Chemo July 2012

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  • mamabr
    mamabr Member Posts: 83
    edited November 2012

    wow - so much has been going on, I don't know where to begin to put my two cents in on anything. I'm thinking about Susan who is going in for mx in 2 weeks. As I recall your daughter is in college, so maybe she'll be on winter break to be home with you for a few weeks?? I hope your body can get some energy before dec. 12. This chemo just zaps everything from us. I am thinking of getting an air purifier for my home and office when I return to work. I am so frightened of picking up a germ, now that everyone is walking around with a sniffle. I think our bodies are working so hard to keep up with our treatments, any extra germ would be a setback. I guess we all have to be so careful now, whether we are ending treatments or going into a second phase of treatments. For those with surgery or treatment ahead, our bodies are a lot weaker than 12 months ago when we had the cancer, but our blood cells weren't beaten down yet. 

    And Natalie, sorry to hear about your lymphedema. You sound so active and your love of exercise is inspiring. I send wishes that your new medical concerns are benign. Let us know!

  • _Ann_
    _Ann_ Member Posts: 769
    edited November 2012

    Aw Nat, so sorry about the new concern this close to the end of treatment.  Wishing you benign results.

  • emilybrooke
    emilybrooke Member Posts: 98
    edited December 2012

    Hi Ladies - I am very sorry to hear about the difficulties some are facing -

    Susan, hang in there you're a strong woman

    Nat - You're in my thoughts and I hope everything turns out okay

     this was my first full week back at work. The kids are definitely testing my patience and I am exhausted. One more full week and then I will be out again for my exchange surgery.

  • Maddie57
    Maddie57 Member Posts: 296
    edited December 2012

    Hi emilybrooke - good luck with your exchange surgery!! Please let us know how it goes, so we can be prepared when we go in for the same thing.

    boobzilla - the worst thing you can do after surgery is not use that arm. It encourages LE and cording. The Macmillan cancer site encourages you to exercise as soon as you can - the day of surgery if possible, although not many people are able to do this. They have a regime of very gentle exercises for the first few weeks.  I was so terrified of cording, as I need my right arm for my work, I tried to do some exercises as soon as I came around. The lymph node mapping is done so they can remove the least number of nodes possible. They try and ascertain which lymph nodes your tumour will drain into first, and only remove those. Good luck - hope all goes well.

  • boobzilla
    boobzilla Member Posts: 58
    edited December 2012

    Maddie thank you so much for your reply. I appreciate the assurances and advice on the macmillan cancer site-I will check it out now:)

  • PaEaglesFan
    PaEaglesFan Member Posts: 277
    edited December 2012

    My LE Therapist said walking is very good exercise to get the lymph system moving BUT.... when you walk, don't let your arms hang down at your sides because the fluid will collect in your hands. 

  • Itsalltemporary
    Itsalltemporary Member Posts: 38
    edited December 2012

    Hi Ladies - were any of you referred to a genetic counselor? I was BRCA tested and results were negative, but onc is suggesting I meet with a genetic counselor for further testing because of family history. Just wondering if anyone else has done this?

  • roadwarrior28
    roadwarrior28 Member Posts: 301
    edited December 2012

    Itsalltemporary - I was referred for more testing; they offered to test me for the Li-Fraumeni syndrome, but I declined. 

  • melanieb
    melanieb Member Posts: 17
    edited December 2012

    Hi itsalltemporary,

    I was referred for genetic testing because of a strong family history and being BRCA negative.  The test they did run was for LiFaumeni and I was negative for that too.  Going through the counseling was helpful for me and for other family members because they were able to look at the family history and make some predictions about the liklihood of other relatives getting breast cancer.  My insurance covered it, so it was not a financial decision.  It did give me some piece of mind, but there were no concrete answers.

  • boobzilla
    boobzilla Member Posts: 58
    edited December 2012

    Thanks for the tip PA Eagles-any idea of when you are supposed to start moving the arm at all? I don't want to induce fluid build up, and have been reading mixed things about when to actually use it-everything from 'as soon as you come out of recovery', to 'don't move it if it hurts'. Well of course it will hurt. I am not sure how many nodes they'll need to remove, but I am just trying to do what I can. Any advice/other resources are appreciated. Lump surgery this Friday if all goes well.

  • PaEaglesFan
    PaEaglesFan Member Posts: 277
    edited December 2012

    I had a lumpectomy w/snb and when I left the hospital on the day of my surgery I had zero restrictions except they told me nothing that would jar or risk bumping the breast.  For me that meant NO WEEDING THE FLOWER BEDS :)  I really tried not to baby the arm too much and you'll know if you do.  A little pulling when you stretch to far will let you know you've gone to far.  It didn't take very long for me to have full range of motion either.  Not sure if I was lucky or too dumb to know I was doing too much, but it worked?  
    Now that everything is finished, I don't have anymore excuses to get on the treadmill and start getting rid of the extra weight I'm carrying.  I just haven't seem to have gotten around to it yet. Undecided

  • natL12
    natL12 Member Posts: 135
    edited December 2012

    Waiting on Friday Nov. 30 to hear if the lump was benign. Finally called at 4 pm...the pathologist hadn't got to it yet and so I wouldn't know until Monday. (Long weekend full of worry.)  Waited Monday until noon, called...the pathologist hadn't got to it yet, Might know on Tuesday@@#$@#$!#@!!

    Had a verbal temper tantrum.  Got a call back in about an hour...the surgeon got out of surgery, called the pathologist, and got results!

    It was benign.  :)

    Sent a report to family and friends, most of whom don't care, but wanted to let them know.  And I started readiation today. Yea, hooray!

    I think my husband is the only one who cares and understands anything (except these good friends on this board.)  I appreciate every hug and good thought you send me.

  • _Ann_
    _Ann_ Member Posts: 769
    edited December 2012

    Hooray for benign results Nat!  And don't you hate it when you have to get cranky to get results out of people?

  • boobzilla
    boobzilla Member Posts: 58
    edited December 2012

    Congrats Nat on the results!!!!



    Pa fan haha, your post made me laugh about being lucky or dumb. Sometimes I think it would be better if I didn't try to investigate so much....but I just started on a rower a few days ago and would not think anything of attempting to row after surgery. Clearly not a smart thing but my competitive nature would want to show myself I could. I think I will need to feel this one out-here is to hoping not too many nodes need to come out!

  • melanieb
    melanieb Member Posts: 17
    edited December 2012

    Nat,

    What wonderful news!  Congratulations!  I hope that you get to relax now and enjoy the rest of your week.

  • Itsalltemporary
    Itsalltemporary Member Posts: 38
    edited December 2012

    Natl12 - woohoo!! Congrats on the great news

    Roadwarrior28 and Melanieb - thanks for the genetic counseling info.

  • mssunshine71
    mssunshine71 Member Posts: 162
    edited December 2012

    Nat - Congrats on the benign results!!

    I went for genetic testing and find out my results on the 13th.  I also find out the MRI results on my liver that day

  • teeballmom
    teeballmom Member Posts: 322
    edited December 2012

    Nat: Congratulations!



    Started rads this week. 2 down and 31 to go.



    Take care.

  • boobzilla
    boobzilla Member Posts: 58
    edited December 2012

    Teeball, how are rads compared to chemo in terms of any side effects? If you don't mind me asking-are you having external or internal, and are they doing your chest and armpits,or just one or the other? Thank you!

    Surgery for lumpectomy and sentinel node mapping procedure...definitely freaking out a bit about mapping...ugh.

  • virginiab
    virginiab Member Posts: 205
    edited December 2012

    Hi, boobzilla--

    Lumpectomy is a pretty easy procedure for most poeple. Even when you add in a sentinel node biopsy, the recovery is neither long nor particularly painful. I was tired and dopey for almost 48 hours, but that was because of the anesthesia (I tend to over-respond to drugs). I never used the prescribed painkiller, just managed with ice, tylenol, and ibuprofen.

    I know we all worry about lymphoma, and it took me several months to settle down and decide that I will take some precuations against it but will not live my life never using that arm for much of anything! If I have trouble with it, I'll have to deal with it at that time, but I'm doing weight-bearing exercise in modest amounts (which I hoope to increase).

    I am just finishing radiation. It is much much much easier than chemo. Obviously, everyone has her own experience, but for me the main side effect was fatigue, especially after the first few weeks. I had less than a week of any real skin problems; the area below my breast (right where the band of a bra goes) was peeling and open for several days. They gave me some nice silicone dressings to calm and cushion the area. That has settled down now and it is still peeling, but like a sunburn with no open, moist areas. Now that my radiation is just "boosts" to the lumpectomy & SNB area, we won't be provoking that area of skin any more, so it should heal up pretty easily.

  • _Ann_
    _Ann_ Member Posts: 769
    edited December 2012

    boobzilla, I hope all goes well for you tomorrow.

    virginab, thanks for the reassuring info.  I'm still facing lumpectomy and rads.

    Well dang, I got sent home from the chemo lounge today because my WBC was too low to get treatment.  It was just under the limit, and I think if my MO had been in the office she would have let me go ahead (as once before), but she was out so the nurses went by the book.  It's odd because my WBC has been higher every week, now it's below threshold.

    So my Christmas plan is kind of kaput-- now my last treatment will be Dec. 27 instead of Dec. 20.   Oh well, I guess being done with chemo by New Year's Eve is still good, right?

  • teeballmom
    teeballmom Member Posts: 322
    edited December 2012

    Boobzilla: rads has been easy so far. My rads ONC told me that side effects would begin about the 1/2 way point through treatment and it would include fatigue and pink or redness. I am being treated over the right breast area down along the side and up near the collar where there are some lymph nodes. Some of the armpit area is being treated also. I am having 33 treatments which include 5 boosts that they explained are condensing the area being treated to the just the tumor field. Now he did mention that as far as side effects, he didn't believe I would really be affected by the fatigue because the fatigue from the rads would feel like a walk in the park in comparison to the fatigue from the chemo. We'll see....... As far as the pink/redness, I am slightly olive skinned so they really don't know how my skin will be affected. The assumption is that I may not be affected as much as someone fair skinned but they also told me that they have seen olive skinned women who have really turned red during the treatment. I was also told that just like chemo, everyone is affected differently and there is no way to know how each persons body will react, but it will definitely be easier than chemo. They are watching me carefully and I meet with the rads ONC every week and he is readily available at any time for his patients. I am being treated at a hospital so there are several rads Onc's on site at all times. It is comforting since it is the same as my med Onc's office where there are always several Onc's on site during chemo treatment. I hope I have not been too long winded in my response. Take care!

  • emilybrooke
    emilybrooke Member Posts: 98
    edited December 2012

    Terrific news, Nat I am so happy to hear it!

  • Madelyn
    Madelyn Member Posts: 93
    edited December 2012

    Just got over bronchitis, 7 days of Levaquin, yikes!

    I start radiation on Monday, thanks Virginiab for the encouraging words on your rad experience.

    emilybrooke-let us know how the exchange surgery goes!

    teeballmom-xoxo

  • Maddie57
    Maddie57 Member Posts: 296
    edited December 2012

    Ann - I am so sorry you had to delay your chemo. You must be soooo disappointed

    Nat - thrilled to hear your results were benign - that must be a huge weight off your shoulders

    Susan- not long to go now before your operation. Hope you are feeling a bit stronger and taking it easy. Just know all your chemo buddies are cheering you on and hoping all goes well. Please let us know how you get on.

  • SusanHG123
    SusanHG123 Member Posts: 414
    edited December 2012

    Thanks to each for the well wishes. Having a bit of a panic today thinking about the big event. Not the surgery. As a nurse I know the technicalities of the procedure.... But today it actually hit that on Wednesday I would awaken with two breasts and the next day have one. Despite the knowledge that my right is trying so darn hard to kill me--today has been hard. I actually stood in my closet and cried trying to decide what one wears to have a mastectomy and leave with drains and hopefully a medicine ball of morphine. Then I cried thinking about starting chemo again in January and still dealing with the side-effects of Taxol. My nails are horrid-what is growing is soft and more like thick skin than nail. No eyebrows or lashes or hair. Tears are still Taxol sticky. The bone pain has not quit. Enough whining. 

    I have gone back almost to the beginning of our group posts and re-read of each of your amazing strength and faith and love for one another. I have gained from each.

    Still want to have a gathering in July of the July group someplace with hot and cold running maid service. Where we can laugh and cry together.

  • mamabr
    mamabr Member Posts: 83
    edited December 2012

    Hi Susan - Thinking about you and sending you lots of good wishes for Wednesday and the next few weeks. You are right, there is so much emotion and you can cry away. A couple of my nurses have been through all this and I look to them with encouragement because they are back working, look amazing and are so compassionate. Nurses are so incredible and you have probably helped many people back to life. Now, everyone will help you! I still can't imagine how life is going to get back to normal, but I have faith that it will. 

    If you like, please send me your address and I'll try to send you something.

  • Itsalltemporary
    Itsalltemporary Member Posts: 38
    edited December 2012

    Hello strong women!

    Just checking back in. Completed 15 of 35 radiation treatments. So far, radiation is a walk in the park compared to chemo. No side effects except for some tiredness. Although I do understand that the side effects are more likely to hit in weeks 2-3 of treatment.

    The hardest part for me is not realizing that my body is still not back to normal. For the most part, I feel like myself during the day; I just get tired at night....until I push a bit too hard. The two times I went away for the weekend, I got sick. It's like my body can't fight things off when it is under stress (too little sleep, too many martini's, or raw fish). Oh well, I know it will come back to normal little by little.

    Anyone, by any chance, doing the 2 day Avon walk in Santa Barbara next Sept? I am planning to walk with a few women I work with.

    And now for a post-chemo hair report...I am 7 weeks out. I have hair growth all over, but it is still very fine. Not yet long enough to tell if it is coming in curly or straight. I HATE my wig more and more each day. Getting very close to gaining the nerve to go without (I am not as brave as some of you!).

    Hang in there Ladies - we are making progress every day!

  • emilybrooke
    emilybrooke Member Posts: 98
    edited December 2012

    Hi Ladies,

    Just checking in quickly... I had my exchange surgery yesterday morning. I was in the OR by 9, recovery by 11, leaving the hospital by 1:30 and resting at home by 3 pm. The pain is present but not nearly what it was after the BMX. i am sticking to the pain meds once every four hours. The doctor provided enough for now through Thursday. I have my post-op appt next Tuesday where I hope they will be able to remove the two drains that I have in place. I haven't looked at them yet but my sister (the nurse) is coming over to help me change the gauze in a bit. I imagine they won't look so good for a while with the swelling and all.

    I hope all is well for each of you!

  • Maddie57
    Maddie57 Member Posts: 296
    edited December 2012

    Hi Susan - God bless you - cry and whine as much as you like!!!! Of all us you seem to have had the harshest treatment plan. I can't even imagine thinking about another round of chemo in January. 

    emilybrooke - thanks so much for reporting back about the exchange surgery. I wasn't quite sure what to expect, but it doesn't sound nearly as bad as the mastectomy and TE.

    Itsalltempo - I am now 9 weeks post chemo - go for another herceptin infusion tomorrow- but my hair does not seem as advanced as yours. I couldn't possibly go without a scarf or wig yet, although I would love to. I have dark hair growing in a fringe at the crown of my head, but am still fairly bald at the front and around the ears. If I look with the light behind me, I can see the faintest bit of fuzz. In fact I look a bit like a shaved "Woodie Woodpecker"! My leg hairs, armpit hairs , and nether regions are starting to grow a bit, but my eyelashes and eyebrows are still falling out which is irritating!! I know what you mean about the energy levels. I start off fairly chipper, but if I do too much, the weakness comes over me like a wave. These waves are getting farther and farther apart though, so I am getting stronger bit by bit.

    Madelyn - I do hope you are over your bronchitis. Good luck with the radiation treatment.

    Have any of you noticed that your body's temperature control seems completely out of whack. The smallest drop in temperature, and I am shivering like a kitten. If the temperature comes up at all I start sweating. I have developed a strong bladder at night. If I get up to go to the toilet which is really close, my teeth start chattering so much I am scared of breaking a tooth!

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