Starting Chemo July 2012

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  • SusanHG123
    SusanHG123 Member Posts: 414
    edited December 2013

    I have not quite a partial tree! Am going to be with all of my children (ages 35-23) at the same time for the first time in years. Over Thanksgiving my youngest was home. I wasn't going to even do a tree-but asked Sarah. She said she wanted to-we got the tree up and a few strands of lights. I went to get more lights-and that was it. She left, I went back to work. 

    Today I wrapped the first gift and am almost finished. Mixed cookie dough yesterday and today started baking. Making Great Aunt Nita's slice and bake (a wonderful cookie with candied cherries and pineapple-sounds awful but wonderful), chocolate crinkles, peanut butter with chocolate stars, and anise cookies (or rat seed cookies as my son refers to them). I might do a cranberry orange bread if I have time tomorrow. Have sour dough bread rising to bake tomorrow. Will drive Monday and return Thursday. 

    Hair-have curls but is still not much over the top of my ears. The top of my head hair is about 2-3" long. Since it has fallen out 3 times I am just glad to have some. The curls-I keep feeling them-so different from my straight hair. 

    From June 2012 to now-here we are. Growing hair, baking cookies, some finished with all chemo, some still meeting with the chemo team. But here we are. Some of the things I thought so important before I do not care a whit about now-I was so compulsive about having laundry finished and ironing completed every single Sunday. I worried more about what people I did not really know thought. Now I am so very very grateful for reading messages on this board. I laugh out loud reading some of the posts and sob reading others. I am joyful with rain on my sparce hair when before I would have been unhappy at the messed up hairdo. I buy shoes more for comfort than style. And am happy about that choice. And I want to know that the rest of the 2012 group is well.

    Much love to each. 

    Oh. And the #%$^^^ ex-husband. I have not seen him. But the reports. Has lost 200 pounds from his bypass surgery-looks like Scrooge. Tall 6'6", bony, scrawny, walks bent over as if he cannot hold himself up. Brags that his penile implant still works. Nice. Still trying to find someone to marry him-on the 3rd or 4th "turbo" relationship-previous have dumped him for cheating (go figure) and keeping his dating sites active (go figure again). In between he serial dates in hopes to find the next Ms Wonderful. I find it humerous and am blessed to have had that cancer cut out of my life! Have until October to finalize the property settlement (NM is very odd in divorce deals) and I am dragging it to the end. 

  • Maddie57
    Maddie57 Member Posts: 296
    edited December 2013

    Hi Susan- gee you ladies are industrious with the cookies!! Poetic justice for your ex I would say. Seems the heart couldn't keep up with the new tool!!!

  • PaEaglesFan
    PaEaglesFan Member Posts: 277
    edited December 2013

    Susan, that is one thing I learned from BC. Do what makes you happy and to hell with the rest. My gifts may not be wrapped yet, my floors may not be spotless when our families all stop by tomorrow evening, but I will have good food, wine and lots of laughs and enjoy the holiday instead of freaking out about everything.

    Don't get too excited about the 4 trees lol.  2 of them are only 18" tall.  The other 2 are 6 ft I guess, but they're pre-lit so that makes it easier.  One is in our living room and one is in the rec room.  It's a way to keep hubby and I both happy.  He likes a tree with colored lights and I like white.  We did have a bit of white stuff from last weekend, but it's been in the 50's/60's the past 2 days and rainy so its all gone.  We'll be having a brown Christmas as usual.  Feel free to pop in for the cookies, I've got LOADS of them!  We ended up doing cutouts, tassies, peanut blossoms, chocolate chip, butter spritz and a chocolate cookie with peppermint pieces.  They all turned out to be very tasty and the whole process went well :)


    One thing I noticed when I was admiring my mom's beautiful manicure... my nails are STILL shitty after all this time.  Fingers AND toes!  They split or peel really easily yet.  I never did keep them long, but some of them still have to be cut back to the tip of the finger because they've broken.  Sucks :(

  • Maddie57
    Maddie57 Member Posts: 296
    edited December 2013

    PAeagles - my nails are also still shot -no matter what I try. Have tried oiling them , Sally Hansen etc but nothing works. I agree with you about the white lights on the tree, but my DH also prefers coloured lights - must be a male thing!!

  • SusanHG123
    SusanHG123 Member Posts: 414
    edited December 2013

    Back from the holidays. And was a lovely time. Inserting a picture of my children-or adults. 

    Matt-will be 33 in Feb. Ace and Anne-will be 32 this summer. Anne is mine. They married in 2010 and Cora is due in April. Sarah is 23. Malia is 35. Gracie is Malia's dog.

    No one argued too much. It was great fun. Much nicer than last year for sure.

    My nails are crappy. Toes still crumbly and some crumble completely off. Fingernails bend and tear. I have never done polish as work in health care-but they look horrid. Try oils and strong base coats. Nothing works. Nail splits and peels. Had the last Taxotere in March and was taken off Herceptin in August or September. Only orals now. 

    image

  • Maddie57
    Maddie57 Member Posts: 296
    edited December 2013

    Hi Susan - I know you sent me this picture, but just wanted to say again. It is gorgeous!!! They all look so happy. Malia is an unusual name- is it just a name you fancied, or has it got other origins?

    Had a fabulous Christmas ladies - hope yours was the same. Bet you are all several kgs heavier with all those delicious cookies on offer!

  • natL12
    natL12 Member Posts: 135
    edited March 2014

    Beautiful Christmas family picture Susan. You are blessed with such children.

    No one has posted lately. Wonder if anyone is still reading. It's about time for my annual mammogram (they should only charge the insurance 1/2 price, I think, since it's only one mamm.) However, that means it's about time for the annual worrying. Silly of me, I know.

    Nat

  • Maddie57
    Maddie57 Member Posts: 296
    edited March 2014

    Hi Nat- good luck with the mammogram. It's always a relief when it's done and dusted for a year. I know what you mean about charging  half price. My husband is follically challenged, and he tells the hairdresser the same thing. 

    Alas it has never worked!!!

    Hope you are keeping well and your hair is still growing!

  • PaEaglesFan
    PaEaglesFan Member Posts: 277
    edited March 2014

    I still do fly-bys from time to time :)
    If anyone is still hanging about and would like to add me as a facebook friend, that'd be awesome.  chellwitmer@gmail.com is the address I use there.  

  • _Ann_
    _Ann_ Member Posts: 769
    edited March 2014

    Nat good luck with the mammogram.

  • Maddie57
    Maddie57 Member Posts: 296
    edited March 2014

    Hi Nat- let us know your mammo results. Good luck!!!

  • mamabr
    mamabr Member Posts: 83
    edited April 2014

    It's been a while since I've logged on. I just spent the evening with the kindest woman that is just starting her journey. As we finished our dinner, I shared with her this place where I found a lot of comfort during those days when I was at the front lines of battle. Today is 24 months from when I was first diagnosed. It is comforting being the teacher and not the student. The word Survivor has much greater meaning now. Prayers to all of you and thank you for being there when I needed people to talk to. ~mamabr (Carla)

  • Maddie57
    Maddie57 Member Posts: 296
    edited April 2014

    Hi mamabr- how lovely to hear from you. Glad to hear you are doing well. I am so glad to hear you were able to help your friend. It makes such a difference to hear from someone who has been there. I am also so grateful to you all for all your help and encouragement. You are an amazing group of women, and one of the blessings of this journey!!!

    Nat- hope your recent mammo was all clear!!

  • _Ann_
    _Ann_ Member Posts: 769
    edited April 2014

    Carla, congratulations on 24 months!  I agree it is good to no longer be the newbie.  How nice that you were able to counsel someone else.

    Hi Maddie57!

    I had my baseline Dexa scan for starting AI's (switching from Tamoxifen) and have mammogram and MRI coming up soon.

    For those that are still checking this thread-- I'm curious do you feel you fully recovered from treatment yet?  I definitely don't feel as healthy as I did before, despite eating better and exercising more now.  Much more prone to fatigue and joint injuries. But of course grateful that treatment was successful so far.

  • Maddie57
    Maddie57 Member Posts: 296
    edited April 2014

    Hi Ann- how lovely to hear from you!!! Good luck with your upcoming tests.. Sending positive healing thoughts your way. The answer to your question is a big fat NO!!! I still sometimes get the most awful chemo fatigue humps out of the blue. I had a really bad one just before Christmas. It went on for weeks. It has worn off a bit now, but I still don't have my full pre BC energy levels back. My brain and I are still complete strangers- we are not even nodding acquaintances!!  Why are you changing meds? Are you experiencing severe joint pain from tamoxifen? Poor SusanHG123 suffers so badly from that.

    An MRI showed up some suspicious lesions on my spine a few months ago which really freaked me out for a few days. A CT and bone scan were negative. Due to the small size and location a biopsy was not possible, so go for another MRI at the end of June to see if they have grown. If they remain the same size they are some benign lesion. I am putting it out of my mind until then, and trying to ignore any stabbing pains from anywhere. Do you experience these bizarre little stabbing pains? I get them in different places, and they are short and fleeting. Please think of me at the end of June, and send me some positive vibes!!

    Please pop in and let us know how your tests have gone Ann. Think of you all often.

  • SusanHG123
    SusanHG123 Member Posts: 414
    edited April 2014

    Hi July 2012 ladies! How wonderful to see some posts again. I miss this thread. 

    Carla-I agree. One of my nursing faculty friends-her sister was just diagnosed. I was able to visit with her on the phone for a long time this week. Just her tone of voice took me back 2 years to the rabid terror and confusion and dripping sweaty days and nights. It was good to be able to say to someone call me anytime day or night. I may not have answers-but I can listen and and try to find answers. And I guided her to this site.

    I do not feel fully recovered. But mine is still a wandering road since I did not get to finish Taxol thus bumped to Taxotere and bumped from it after just one dose. And only 20 of the 52 doses of Herceptin. Have been on Femara 3 times, Aromasin once and Tamox once. Femara now. I am trying every day to eat better. Exercise. Bought new walking shoes and a new leash for my dog. Does that count?

    I hope clear everything for our lovely July friends. I still want a reunion @ someplace with hot and cold running cabana boys and excellent maid service. We need to meet each other and hold tight. 

    Love to all.

    s

  • _Ann_
    _Ann_ Member Posts: 769
    edited April 2014

    Hi Maddie, it helps to hear I'm not the only one still experience significant fatigue, although I'm sorry you're not 100% yet either. To answer your question my MO wants me on Tamoxifen for 2 years, then AI's for eight years.  I think there's some evidence about this protocol as opposed to 5 years of tamox.  It is also related to my menopause status. Chemo-pause was permanent for me. I thought my joint pain might be related to tamox but my MO does not think so.  Honestly I was pretty prone to overuse injury before treatment so it's not a new thing for me. The hot flashes are the biggest annoyance.  Really sick of those.

    Sorry to hear about your MRI scare.  I am told they are known for false positives. I do get a lot of weird little pains that are hard to locate. I am not going to go to the doctor unless something persists for weeks.  I was convinced I had lung mets and it turned out to be acid reflux, so I kind of learned a lesson about that kind of thinking.

    Susan it is weird to remember the terror isn't it? Like nothing I ever experienced. Walking and dog walking definitely count for exercise.  Come over to the "Post your daily exercise" thread for support with adding exercise.  Great bunch of people there. Yes it would be fun to have a chemo class meetup.

    I got my Dexa scan results and do have enough bone loss that I may have to go on some bone density meds before starting AI. Not really what I wanted to hear but I'm glad my MO is on top of it.

  • Maddie57
    Maddie57 Member Posts: 296
    edited April 2014

    Hi Ann- seems they always say the Tamox is not related to joint pain, but funny how  many patients complain about it!  That is a long time on treatment, hope it goes well for you, and they manage to build up your bones. Ditto  The hot flushes- just hate those!! We should all try to meet up on our 3rd anniversary.

    I know the MRI'S are very sensitive and pick up all sorts of benign complaints. Hoping that is the case. Keep well.

  • Itsalltemporary
    Itsalltemporary Member Posts: 38
    edited April 2014

    Oh its so nice to see this board active again! Great to hear how everyone is progressing. Susan and Maddie - so sorry to hear you are still not feeling back to normal.

    Can't believe it has been 2 years already. Fortunately, I am feeling back to normal. Well almost normal....like many of you, the hot flashes are brutal. Also feeling an underlying sense of agitation. My Onc says that it may not necessarily be a side effect of the tamoxifen, but normal side effects of menopause. He said the estrogen level continues to step down over time triggering more side effects. At some point the body will even out and the hot flashes will stop,

    Of course, not string would be complete without some hair discussion. How is everyone's hair? I kept mine very short for a long time, thinking I could cut out the curls. Finally gave in an am letting it grow. It is still very curly, but iI am learning to embrace my curls. Sure makes getting ready in the morning very fast!

    Wishing all of you the best!

  • _Ann_
    _Ann_ Member Posts: 769
    edited April 2014

    itsalltemporary, good to hear from you. I had the same idea on hair-- just keep it short til the curls stop. Finally it's relaxed enough to tolerate letting it grow. I got my color and thickness back, but it's still curlier. My eyebrows and lashes did not fully recover-- sparser and shorter.

    I so hope the hot flashes let up eventually!

  • PaEaglesFan
    PaEaglesFan Member Posts: 277
    edited April 2014

    Hello to all of you lovely ladies!  It is hard to believe how quickly our 2 year chemo-versary is approaching.  I am actually looking forward to my cancer-versary this year as we are having a surprise bridal shower for my daughter that day!!  I go for my annual mammo 2 days later, but I refuse to dwell on thoughts of that, I've got happy things to look forward to!  So yes, I think I feel like my life is back to normal now.  At least a normal as I can be! lol  Some days I don't even think about cancer.  At least until I see myself in a mirror.  I had a reduction done in Sept and that went well.  He did a fill where my lump was removed and it turned our horrible.  It looks like a bruise under my skin and it's rock hard and I don't think it's going to change even tho he said it should soften up.  

    One of my breast buddies goes for her annual MRI today, she was diagnosed 6 months before me and was a god-send when I got my news.  Another friends mother (78 yo) found a lump and has started on her journey.  At this point they estimate it to be about 5cm and she had her other scans done last week and so far they don't see that it has spread anywhere but there is a good possibility it's in the lymph nodes.  I hate that I know so much about this subject, but at least I can help calm some of her son's worries as far as treatment goes.  Chemo wasn't 'that bad' was it?  O_o    She meets with her MO today so they can get their battle planned out.  It sounds like it will be chemo then mastectomy.   Of course she isn't happy that she's going to lose her hair.  She has lovely thick hair now and has a wash and set done every Friday.  Just like my gramma use to do!

    As far as the Tamoxifen goes... I had TERRIBLE pain in my joints the first couple of weeks, but I took ibuprofen in addition to my arthritis meds and soldiered thru it.  I have flare ups from time to time, but at this point I think it's just the signs of getting older.  My MO has also discussed the extra 5 years of tamoxifen being beneficial to me.  Once I complete the 1st 5 years, we'll revisit my menopause status and if I am in true menopause, she will switch me to a different med.  At this point, my period is hit or miss.  It had stopped during chemo and came back 2 months after my last treatment.  Then I went thru a stretch that it was fairly regular and now I'm back to none.  (YAY!!)

    My hair... it's the same color/texture as it was prior to chemo (STICK STRAIGHT).  Big difference now is that I've let it GROW.  I had always kept it cut fairly short but since losing it, I've gone to an asymmetric bob.  It is SO WEIRD to feel hair over my ears and tickling my neck and I LOVE IT!!  It actually took 2 attempts to get this cut because I didn't want her to take any length from the back.  A few weeks later I called and told her I was ready... it was still hard hearing it go but it's an adorable cut and really doesn't take much more than washing and blow dry and I'm good to go.  

    Have a blessed Easter weekend!!

  • Maddie57
    Maddie57 Member Posts: 296
    edited April 2014

    Hi itsalltemporary - how lovely to hear you are doing so well. I was just whining the other day!! I am not back to normal, and fear I will never be back to what I was, but that does not mean I am not able to enjoy my activities. I have just had to slow them down a bit, and take more heed of my body when it is trying to tell me it needs a rest! 

    I still have curls, but with every cut I lose some, and am kind of hoping the last few will stay, as it gives a bit of bounce and volume to my stick straight hair. Aren't I fussy!!! My eyebrows, eyelashes and nether regions have grown back, but are definitely sparser, and I have read that is often the case. They may never grow back to their former thickness. 

    Paeagles- bet your new cut looks gorgeous!!! Enjoy the wedding. Is this your first child to get married? I have 2 sons, and despite the fact the oldest one had not lived at home for years I cried like a baby for 2 solid days after the wedding.I couldn't seem to stop. That song "Where are you going my little one" kept playing through my head. You know the bit where it says - turn around and you're one, turn around and you're two, turn around and you're a young girl with babes of your own- or something similar. It would play through my mind, and I would start weeping like a whale again. I really love my Daughter-in-Law, so it wasn't the fact that I didn't like her. I just couldn't believe my son was all grown up. Good luck with the upcoming Mammo. I was interested to hear your experience with the fat fills. I have a silicone implant, as I had a mastectomy, but my PS wants to fill in the edges to make the outline more natural. I have been dragging my feet on this, as I keep thinking - leave well enough alone.

    Keep well ladies

  • PaEaglesFan
    PaEaglesFan Member Posts: 277
    edited April 2014

    Maddie, It is my daughter who is getting married.  My son will be finishing culinary school and graduating a month before the wedding.  He is still living at home and it's a blessing and a curse lol.  My daughter has been living with her fiancee since July 2012 (She moved out the weekend after my 2nd chemo.  Again, it was a blessing and a curse lol)  I do wonder where the time has gone.  I swear it was just yesterday we brought this tiny thing home and had no idea what we were suppose to do and here she is all grown up with a home of her own.  
    As for your PS wanting to do the fill.  My advice to you is, If you are happy with how they look now, leave well enough alone.  If you think the change will help make them look more natural, then just ask a lot of questions before making your decision.  What are the long term results like?"  Will it feel natural?  What happens if there is fat necrosis? (I believe that is what's happened in my case.)  
    My breast buddy had a good report from her MRI (YAY!)  I worry so much about her having a recurrence because she is hormone positive but doesn't want to take the tamoxifen but has changed her eating habits.  She has got strength and willpower that I can't even begin to imagine.
    Our friends mother had her first chemo the day after she met with the MO.  She's scheduled for 6 taxotere/cytoxan treatments every three weeks.  Her tumor is triple negative, so they expect a good response from the chemo and will have surgery after that.  
    Yesterday I came across The Little Couple on TLC and I just ADORE them!!!  I cried when Jen found out about her cancer (Stage III Uterine) diagnosis, I cried when she talked about the cumulative effects of the chemo and I cried when she rang the bell.  My mom asked me if I'd ever be able to watch stories like that without crying.  I don't think so and I honestly don't think it had anything to do with my own treatments.  I'm just a crier lol.  But God love those 2... they adopted a son from China and a daughter from India and they specifically looked for children who have dwarfism so they can teach them to overcome the challenges of living in a big world.

    Happy Monday ladies!!

  • Maddie57
    Maddie57 Member Posts: 296
    edited April 2014

    Hi Chell-I know it is your daughter getting married but the sentiment remains the same!  I have 2 lovely sons but no daughters unfortunately.Have you found your dress yet? I found it such a nightmare to find something nice but comfortable!! Will finish replying later. My DH wants to use the tablet!!!

  • Maddie57
    Maddie57 Member Posts: 296
    edited April 2014

    Hi Chell, re the fat implant I have decided to leave them. Crosses my mind occasionally, but really this implant fills my bra, and I am so grateful to have it, as the foobs are sooo heavy! My PS told me there is always some fat reabsorption, and it has to be repeated several times sometimes. He also told me about fat necrosis. If that happens the only way to get rid of them is to cut them out, and start again. Couldn't face all that-it would mean more time off work.

    Yeah for your breast buddie!! Glad it is working out for her refusing the Tamoxifen. Good luck to your friend's Mother!

  • SusanHG123
    SusanHG123 Member Posts: 414
    edited April 2014

    I am so glad to have activity on our thread again! I have no boobs-so cannot comment on that. But the foobs are so darn heavy. Each is 2.5 lbs. And feel like a mattress. I am going to look @ a different brand soon. Shopping for boobs. How odd.

    But tomorrow I am going to meet my granddaughter Cora Jean! She was born April 3rd @ 9:47 pm. 7 lbs and 3 oz., 20". I finished her quilt about an hour ago. So excited. 

    In May I will be moving my youngest daughter to Boulder for law school. My oldest is kind of in love. My son-who knows. He was engaged several years ago and she forgot to quit dating. He had a very rough time.

    But, I do not feel up to par. I am still so tired.

    I watched The Little People when she rang the bell and cried. And cried  more. I did not get to ring the bell. 

    Off to try to sleep. I cannot wait to touch Cora. And see my daughter as a mom. 

    Love to all

  • Maddie57
    Maddie57 Member Posts: 296
    edited April 2014

    Susan - thrilled to hear you finished the quilt in time! I'll bet it is beautiful. A beautiful quilt for a beautiful baby. I know you were worried about finding enough material in Anne's chosen colours. Enjoy little Cora.

  • natL12
    natL12 Member Posts: 135
    edited May 2014

    to paEaglesFan regarding your friend's mother (78 yr old). I was 75 when diagnosed, also triple negative. It reduces your options for treatment. All they can do is chemo, surgery, radiation. No hormonal treatments. But I recovered well. Well enough to do a half-marathon in May. A little slower walking than I used to be, but I got the 13.1 miles done fast enough that they didn't have to bus me in off the course. :)   So she can look forward to recovery even though she's TN and older than most on this thread.

    Good luck to you all as you progress. It's good to read some activity on this board.  Nat

  • Maddie57
    Maddie57 Member Posts: 296
    edited July 2014

    HI Ladies- well our 2 year anniversary is upon us. Hope you are all still keeping well. Aren't you glad it is not this time 2012!!!!

  • SusanHG123
    SusanHG123 Member Posts: 414
    edited July 2014

    Two years ago seems like yesterday and a hundred years ago! Mybirthday is also this month-and 2 years ago I had 9 punch biopsies, 2 clips placed, and a "small" wire placed. Last year my BS told me I would need to have my other breast removed-and a clip placed, dye injected, and she and the PS still did not think reconstruction @ this time was a good choice. So---this year I plan to sleep for the entire 24 hours!

    But-I had an ECHO a couple days ago-and my LVEF was up to above 60%!!!!! So-should be able to wean off cardiac drugs! And I am going to BEG my MO to let me try Herceptin. He will probably say no-but am going to try.

    Wish members of our group would check-in. 

    Much love

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