Calling all TNs

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  • gillyone
    gillyone Member Posts: 1,727
    edited April 2013

    Hi CS, just nothing much going on. BTW we loved Anzac biscuits when we spent 5 months in NZ!

    Jan - nothing wimpy about your SEs and rads. Just the way it is. With both chemo and rads, none of us know how we will fare. I am a red head, freckles, fair skin etc but my skin held up really well. The RO said there was no correlation between burning from the sun and skin reaction to rads.

    We are finally getting sunshine in the Pacific NW. My tulips are in flower and it feels like time to get started in the  garden.

    Three weeks today I will be in England!

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  • OBXK
    OBXK Member Posts: 791
    edited April 2013

    Jen - speedy recovery wishes!

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  • Stupidboob
    Stupidboob Member Posts: 345
    edited April 2013

    thanks for all the replies...............

    not feeling to well today, I think I over did it yesterday and today I paid for it and then not really being able to taste things I am eating way to much and the wrong things and then just laying on my butt......oh yeah that helps :(. 

    jenjenl I am glad that your surgery is over and you have one less thing to worry about.   I wish I could get my nerve up to just get all my female stuff out......

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  • bak94
    bak94 Member Posts: 1,846
    edited April 2013

    Jen-I had a hysterectomy last October, a little over 6 months after I finished up all my cancer treatment. It was rough for me. Make sure you rest and don't over do anything. I had the da vinci method and could not believe how small my incisions were, I can't imagine what other's go through that can't have it done that way. Even though that part was good, I had extreme fatigue, which is finally getting better after 6 months!

    I went for a bike ride today! So funny how wobbly and nervous I was, like riding a bike for the first time. I used to ride all of the time, did the Seattle to Portland bike ride a few times. My hubby was sweet, he stayed with me when I told him to go on so he could get a good ride in. After the ride he pointed out that it took us 16 minutes to ride 2 miles and how many people run faster than that:) It made me laugh and then I said, well, it took me an hour to walk that same 2 miles yesterday! Gotta just keep at it, can't expect to be like I used to be right away, after spending a year on the sofa.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited April 2013

    Jan was it you who mentioned your thyroid.  I found this on my home page.

    MIRACULOUS THYROID DRINK This tea helps the thyroid perform better. This tea is delicious! It helps your thyroid work better, give it a try! RECIPE: – 1 cup unsweetened 100% cranberry juice – 7 cups purified water – 1/2 tsp ground cinnamon – 1/4 tsp ground ginger – 1/4 tsp ground nutmeg – 3/4 Cup fresh squeezed orange juice (approx 3 oranges) – 1/4 Cup fresh squeezed lemon juice (approx1-2 lemons) DIRECTIONS: Bring water to a boil; add cranberry juice, reduce heat to low Add cinnamon, ginger, & nutmeg, stir and let simmer for 20 minutes; let it cool down to room temperature Stir in orange & lemon juices...Add ice and enjoy! Please share on your wall for future reference and join us here for more tips and healthy ideas: @[315787628499186:69:All-Natural Weight Loss]


    MIRACULOUS THYROID DRINK This tea helps the thyroid perform better. This tea is delicious! It helps your thyroid work better, give it a try! ... RECIPE: – 1 cup unsweetened 100% cranberry juice – 7 cups purified water – 1/2 tsp ground cinnamon – 1/4 tsp ground ginger – 1/4 tsp ground nutmeg – 3/4 Cup fresh squeezed orange juice (approx 3 oranges) – 1/4 Cup fresh squeezed lemon juice (approx1-2 lemons) DIRECTIONS: Bring water to a boil; add cranberry juice, reduce heat to low Add cinnamon, ginger, & nutmeg, stir and let simmer for 20 minutes; let it cool down to room temperature Stir in orange & lemon juices...Add ice and enjoy! Please share on your wall for future reference and join us here for more tips and healthy ideas:  All-Natural Weight Loss

     

    Good to hear from you Gilly.  You will just be getting to England in time for summer.  Have a safe trip and buy plenty!!

     

    Bak would have love to see you on your bike ride and good to know you were having a laugh with your hubby.  Now just don't fall off the bike.

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    You are most definetly not a wimp. Every woman has a different challenge. I hated my port. Of all the insignificant things, port and hair loss were the hardest for me to swallow. Ah, vanity thy name was Shawn:) (my name)

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited April 2013

    jen...congrats....the news is FANTASTIC!!!

    jan...you certainly are no wimp....I know many of the gals suffered with rads but it will soon pass and once the fatigue is gone...back to normal again Embarassed

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  • jo92879
    jo92879 Member Posts: 12
    edited April 2013

    Good Morning! I am new to this page. My name is Jamie and I am 33 years old. I have a wonderful loving husband and 3 beautiful children. I was diagnosed with TNBC on Feb 15th, had a double mastectomy on March 13th, and started my first round of AC on April 2nd. I am having such a hard time with the chemo, my first round of chemo was horrible as the meds that were given to me just did not agree with me but by day 7 I had a complete turn around and felt great. My second round on April 17th, they had adjusted my meds but I am still not feeling quite right. I am doubting that I can actually finish the next six rounds. I am so emotional and frustrated, I just want to be done. I am half way through the AC and will start Taxol the first part of June. I am so scared. I just don't know how much more of this I can handle. Has anyone ever felt this way? Am I just being a big baby? I go back on May 1st for another round of AC and I am so anxious about it, it just seems like as soon as I start to feel a little bit better it's time to go back. I'm just not sure of what to do at this point. Does anyone have any advice they can give me? Feel the same? Thank you in advance for any help you can offer...

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  • Marianne52
    Marianne52 Member Posts: 78
    edited April 2013

    I had a very difficult time with Rads as well. My skin was very burned with blisters. Finished treatment 3/15 and skin is just starting to clear up. The fatigue for me was worse than the Chemo. Thank God my treatment is over now. Marianne

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2013

    Hi everyone, here I am.  Just got back from 6 days in San Juan with my sister.  We were sitting by the pool every morning at 8 and spent most of the day right there.  A cocktail or two and warm sunshine - very therapeutic and I feel great.  Now it's back to reality (chemo this afternoon).  I was reading your posts most every day but was trying to not spend my time on the computer. 

    Hope everyone is doing well, and it was really good to get an update on Dawn (Inmate).  I miss her humor.

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  • jenjenl
    jenjenl Member Posts: 948
    edited April 2013

    Jamie - I sent you a private message. 

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  • Luah
    Luah Member Posts: 1,541
    edited April 2013

    Jamie: Sorry you are going through this and having such a hard time. Keep pushing the docs to up or change the meds. It is pretty normal to feel tired and "flu-ish" for a few days (and some women have it worse than others), but today's medications should be able to take away any nausea.  Many women report that some treatments hit them harder than others, so don't depair, it will likely get better.  Also, many women report that taxol is much easier to take than AC (I felt practically normal on taxol), so again, try not to despair.

    Are you getting enough rest? It must be very difficult with 3 young kids, but rest really does help in managing side effects. Chemo is a crappy ride to be sure, but you'll get through it. 

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  • JAN69
    JAN69 Member Posts: 947
    edited April 2013

    Thanks Cocker - I'm still sitting by the phone waiting for biopsy results.  I'll go to store to get ingredients when I finally hear from doctor.  I was warned it would take about a week for report, but I was hopeful it would come sooner.

    To those of you new to thread and those suffering, hang in there, it does get better.  I wanted to give up so often during chemo, but somehow found the strength to keep going.  You can too. 

    Find some joy today!  Jan

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  • Titan
    Titan Member Posts: 2,956
    edited April 2013

    Hey Jamie...chemo sucks big time...i wanted to quit after each treatment...my only suggestion to you is to check in with the chemo threads on here...you can talk with women going through the same thing at the same time as you....it really helps alot..especially when you are ready to quit..I remember reading about women that were done and thought I would never reach that point..but I did and you will to...just want you to know that we are hear for you and please come on here and rant about the chemo as much as you want...it really does help!

    Thanks for the update on Inmate...I think about her alot..love you Inmate!

    Hey Cocker...I'm still around....and yeah still running..planning on doing several 5k's this summer/fall....and yeah..your thighs better be clapping...lol...I still laugh about this every time I run...love you all

    Got the mammo and 2 appts. coming up in May...geesh...I know I've got to go but really don't want to...going to schedule a colonoscopy too...blah...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    I started Zelda/Ixempra on Tuesday. Tuesday and Wednesday were okay. Today has been not fun. I am so glad my DS is here looking after me this week. I'm hoping this gets better soon!



    Phyllis

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  • OBXK
    OBXK Member Posts: 791
    edited April 2013

    Phyllis - I hope tomorrow is a better day.

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  • 5thSib
    5thSib Member Posts: 141
    edited April 2013

    Jamie -- AC was really rough for me -- had mine every 2 weeks for 4 treatments. I was nauseasted and sick just about the whole 8 weeks. Kept telling my husband I didn't think I could take anymore. He kept telling me it would be over soon and I could do it -- and I did. Just hang in there and let your MO know about ALL your side effects.

    One last thought on the study I had posted the link to -- the important part is that they may have found something that will help improve the odds. Hopefully it will be approved for clinical trials soon and will be successful. I thought back to what my MO told me on my first visit -- "we really don't know how to treat TN, but we'll hit it hard with the best we know to do." He then showed me a decision making chart where he had put in my age, health, grade, tumor size, nodes involved, and receptor status. It showed that without chemo, I would have a 44% chance of relapse. With the treatment he was recommending (AC/T), that risk was reduced to a 23% chance of relapse. So, I'd rather take my chances with the chemo drugs. And, hopefuly then they will find something that will reduce those relapse odds even more.

    Tomorrow I am participating in my first Relay for Life. My company is sponsoring a team for the first time. I'm a co-chariman, so I hope I can make it all night. Of course I think everyone would understand if I didn't since I'm only two weeks out from my final chemo, but I want to try. I just hope I can walk some -- still having some neuropathy issues in my toes.

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  • JAN69
    JAN69 Member Posts: 947
    edited April 2013

    5thSib - Good luck tomorrow.  Only 2 weeks out?  WOW

    Phyllis - Thinking of you in Nebraska.  My DH is from SE NE.  Tonight we had what we Californians call corn on the cob.  He still calls it sweet corn.  He's lived in California more than 50 years.  I surely do hope your SE go easier as time passes.  So nice your son is able to be with you. 

    Cocker - I haven't heard any stories of your trouble making dog lately.  Is he/she still at it?

    Jan

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    Jamie, you can do this.

    AC is the worst but it will pass and its worth the increased odds it gives you. Try to have someone help with the kids day 3,4, 5 after chemo. Read books, watch tv , take meds to keep you calm and sleepy. Taxol is not ad bad. This is temporary. Have girlfriends over to help you. It will pass. It stinks but it will be a memory soon

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited April 2013

    5thSib....DD AC was tough for me as well. Had to quit after the 3rd round due to PEs. They changed the DD Taxol to 12 weekly and that was fine.

    I am really annoyed that my MO never even mentioned I am basically TN with just 2% ER+...and he still insisted I take Anastrozole. I just read my path report a few weeks ago and asked him if am I basically TN. His answer was "they are just words". WTH does that mean?

    Good luck with the walk...I also have neuropathy in my toes but no pain. My MO said it would go away but 14 months PFC, it's still there. Nothing terrible, just annoying at times.

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  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2013

    My onc said maybe tamoxifen for a 4 percent estrogen this time. I don't think so.

    We will test again on Sx patho. Surgery next week on Wednesday. Scared and sure could use some recurrence encouragement from any who have done this.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    Jan - yes, they do call it sweet corn here.  I can't wait for it to be ready!  I love summer dinners of sweet corn and sliced garden tomatoes.

    Great news today.  My brain MRI was normal!!  Yippee!

    Phyllis

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  • slv58
    slv58 Member Posts: 1,216
    edited April 2013

    Great news Phyllis! Celebrate today-what a great way to start the weekend

    *******Happy dance*******

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  • JAN69
    JAN69 Member Posts: 947
    edited April 2013

    Phyllis -- Hip, hip, hooray!  Good brains are nice to have.    Sweet corn, tomatoes, and a grilled burger.  That's what summers are made of.  Jan

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  • jenjenl
    jenjenl Member Posts: 948
    edited April 2013

    Phyllis - Great news, enjoy your weekend!

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  • afriday322
    afriday322 Member Posts: 4
    edited April 2013

    Hi...I am new to this site and newly diagnosed with TNBC. Just had bilateral mastectomy April 18, 2013 for rt breast cancer tumor was 6.2cm and 1 microscopic invasion of 1/22 nodes + ... stage (per surgeon) 2b path report says stage 3. Waiting for an appointment to see an Oncologist. Surgeon says I don't need radiation? not sure if that is accurate.  I will be doing chemo soon I'm sure. Wish you luck and hope side effects improve so you can get all recommended treatments.

    Anna

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  • JAN69
    JAN69 Member Posts: 947
    edited April 2013

    So sorry for your news.  We all know how scarey it is to be newly diagnosed, but you have come to a great source of support from lots of experience sisters.

    I can only speak from my own experience.  I had ACT and the 36 radiation treatments.  I'm doing fine 2 years out.  Your medical oncologist (MO) will be giving you his/her best opinions.  Not sure why surgeon would tell you that you don't need chemo.  You will feel better once you have a plan for your care.  Best wishes.

    Jan

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  • placid44
    placid44 Member Posts: 497
    edited April 2013

    Jamie,



    I had a very hard time with AC, and I was a very healthy 44 year old. I had a much easier time with taxol. My advice would be to work with your oncologist to manage the AC side effects as best you can, but try to complete the treatment as scheduled. It is very unpleasant, but can really help get rid of the cancer. I believe with TNBC they try to hit it hard up front. (have seen others same the same). I am sorry you are going through this.

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  • placid44
    placid44 Member Posts: 497
    edited April 2013

    Anna,



    They recommended radiation for me with a 3.1 cm tumor and 1/4 nodes positive. I did ACT chemo first, followed by a bilateral mastectomy. There can still be stray cells in the skin or mastectomy scar or remaining breast tissue, so they still recommend radiation sometimes (not sure about your case), even with a bilateral mastectomy.

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  • natL12
    natL12 Member Posts: 135
    edited April 2013

    Titan - Just did a 5 K last weekend. Had a mammo Tuesday, waiting to hear from the surgeon to schedule a colonoscopy, doing a 5 K the first weekend of May.  It's great to be back to approximately a normal life.

    To all - yes, life does go on after chemo and radiation.  Nat

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