Checking in and update from another "old timer"

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Fitztwins
Fitztwins Member Posts: 7,969
edited September 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hello Ladies,(and men)

it was 10 years ago this month that my mets were officially diagnosed. So I guess this is my 10th year living with METS. (dx stage IIIc orginally).

Wow, I honestly didn't think I would live this long.

I have been through many treatments. Herceptin for 10 years, AC/T, Taxotere, Taxol (2x), Tykerb, Prejeta, Xeloda , TDM1

also, Femara, Arimidex, Aromasin, Falsodex and Tamoxifen.

I have never been NED(except after my stage III dx) , However, my mets are very slow growing, Grade 2 I think. So I know that may be one of the factors for me being an exceptional outlier? I seem to get about 2-2 1/2 years out of a combination.

I have been through 3 oncologists, and now 2 clinical trial oncologists.

Yes, I too, like Jen have beaten the odds, although differently.

All 10 years haven't been easy, and I do feel the effects ( hip replacement, rads, pain, nephropathy, fatigue, weight gain), but I am still here.

In two weeks I start a new clinical trial (already into the prep). It is Herceptin + ALX148 (Immunotherapy). It is Phase I. and local. Which is a huge blessing. I am excited but nervous.

For those of you early in your journey in cancerland, I recommend that you push. Push hard for the least toxic treatment. Research, get second opinions. Get all aches and pains checked out. Stay super active as much as possible. Live each day to the fullest. Kick fear to the curb as much as you can. Ask for help, and if you are depressed or have anxiety, don't hide it. Reach for help.

Onward and Upward. And enjoy Every sandwich!!


Janis

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Fitztwins,

    Congrats on your 10 years -- you are such an inspiration! Thank you for posting to remind us all that a diagnosis isn't the end and that many more fulfilling years are ahead for many who are diagnosed.

    We look forward to hearing about your experiences with the clinical trial and are sending best wishes for great results!

    --The Mods

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited May 2018

    Janis, WOW ten years! WOOHOO! That is fantastic. I don't know how long it will take for researchers to learn why some people are exceptional responders, but for now, all I want to do is celebrate your milestone. You are a member of that of the elite group of exceptional responders that we all strive to join. You have been an important contributor to these boards, and I have missed your posts, but it is good to know that you are doing well and living your life. I hope the clinical trial gets you to that elusive state of NED and that the next ten years are easier for you than the last ten have been. Thank you for brightening my day by sharing your goodnews. WOOHOO!

    Hugs and prayers from, Lynne


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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited May 2018

    Janis- Incredible! Congratulations!! You inspire us all, while also telling it like it is!! Everybody gets just the one shot at this life, and we have been assigned to be the trapeze artists, working without a net!! So happy to hear you've able to keep mind and body together through trials and tribulations and success. A decade is an incredible accomplishment and I hope your celebrations go on and on...

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited May 2018

    Janis

    You always amaze me.  In spite of the obstacles you persist on living your life to the fullest.  Being the most active and involved mom to those two boys.    We have essentially walked this path parallel to each other but our cancer behaves differently.  Your 10 years have been much more difficult than mine.   This just reinforces there is no cookie cutter approach to cancer.  We need research to identify how to treat us as individuals.   I hope and pray that this trial is exactly what works for you on a long term basis with minimal side effects.    Thank you for being brave to sign up for hopefully your benefit and for others.   

    Cheers to you!!! 

    Jen

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited May 2018

    Janis. Awesome advice. Glad to see you post.


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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited May 2018

    Fitztwins, I remember you when I joined the boards as Stage IV. Everytime I ate a sandwich I thought of you!

    Thanks for checking in. We need your positive and honest news.



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  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2018

    Janis,

    So glad you popped up! I've missed your trademark spunk, wisdom and verve. Glad to see you're in fine fettle.

    Thank you for sharing your good news and advice.

    Tina

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2018

    Janis, I needed to see this. I’m not one of these people who can jump on H/P and get and stay NED. I’m not one of the 1-3% potentially cured. I haven’t even gotten as much time out of treatments as you have. But there are more options these days and I haven’t yet had any big explosions of cancer.

    This gives me so much hope that I can just keep stringing treatments together, investigating new ones, keeping myself healthy otherwise...and before I know it, ten years have gone by.

    I’m fighting back tears of hope right now. Thank you!!!

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  • Meja
    Meja Member Posts: 102
    edited May 2018

    Hi Janis

    Thank you for sharing your story and congratulations; this is great news and provides hope for someone like me (diagnosed with MBC a month ago). We need more research to understand why some are 'exceptional responders'. I am also HER2 positive, when I first learned this (at the time of the first diagnosis), I was scared reading about the more aggressive profile of HER2 positive BC. However, now as an MBC patient, the targeted products available carry hope that progression may be halted (at least for some time). I’m Danish and just received my second round of Herceptin and Perjeta today (in combination with oralChemotherapy), coming home and reading your post and great advice is really, really helpful and motivating. Thank you so much for posting. Also your participation in clinical trials is admirable; it is exciting and promising that studies with immunotherapy are being conducted within the field of MBC.

    Meja.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited May 2018

    Hi Janis

    I am so grateful to you for both posting this just now and for your support when I was first dx 14 months ago.

    What a terrific spirit you have and such tenacity.

    Best wishes for the trial. I hope you will be able to post about your experience.

    Liz

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  • sandilee
    sandilee Member Posts: 1,843
    edited May 2018

    It's so great to hear from you again! You are one of the people who inspired me when I was first diagnosed, and you still are an inspiration!

    I don't post very much either, but I do read the board a lot and try to post if I have anything positive to contribute. It's been 7 years for me with bone mets and three with liver, and I hope to be around to celebrate 10 years as you have. But as we both know, it's not an easy road, this staying alive! 😆

    But it has certainly been worth the effort. Good luck with your trial, and thanks for all you are doing.

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  • josgirl
    josgirl Member Posts: 231
    edited May 2018

    Janis

    Ihave always gained a sense of strength and push thru it ness when reading your posts. Enjoy every sandwich always stayed in my mind thru the fear of metastasis and resulting diagnosis. Appreciate all your pragmatism and thanks for the update and hope!

    Josee

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2018

    Janis,

    So very good to hear from you ! Congratulations on this epic anniversary. How old are your boys now?

    Wishing you the best!

    Caryn

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2018

    Great to hear from you, Oldtimer! Best of luck on the clinical trial and hope it keeps you around another 10 years or more. It IS possible!!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited May 2018

    Fitztwins, it is always wonderful to see your posts and hear what you have to say! I know that you take large breaks from posting as you are at the task of living your life. I think of you often and am glad to read your update. Congratulations on ten years of moving forward after an mbc diagnosis! And you have been at the whole bc thing for several years prior to the mets dx. So my goodness. Your story is one of perseverence, hanging in there and taking things one day, one step at a time. We all benefit from your experiences, insight and advice. Even with the continued ups and downs of mbc, you come across as very level headed as well as determined to live a full life in spite of mbc. You are truly inspirational!

    Yes, hoping for all good things with the upcoming clinical trial! Best wishes!


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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited May 2018

    Thank you all for your kind words. I recognize so many of you.

    My boys are 17! just went to their first prom. They still keep me on my toes. They play Hockey and Basketball. Hard to believe they were 4 when I was first diagnosed and still in preschool. One more year of High School!!

    image

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited May 2018

    very handsome boys.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited May 2018

    Fitz, 10 years (and beyond!) is wonderful to see. The more of us who get to that milestone, the more hope for the rest of us.

    Isn’t it fabulous you got to be your boys mother? This was my concern as well when I was diagnosed almost 7 years ago. Now I have one in his third year of college and about to be 21, and another who also has just one more year of high school (prom next week). Sometimes I can’t believe I am stillhere.

    Thank you for your message. We can live with cancer ,even in constant treatment, and not NED...and yet we can still LIVE.

    Cute boys, btw.

    Sunset

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  • holmes13
    holmes13 Member Posts: 214
    edited May 2018

    fitztwins this is awesome news!! Really inspirational. Good luck with the trial.

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  • KarPC
    KarPC Member Posts: 201
    edited May 2018

    Thanks for providing us with your positive news. You are an inspiration!

    ~Kari

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  • RuthieL
    RuthieL Member Posts: 10
    edited May 2018

    Thanks for the sound advice and encouraging words. I wish you the best on your newest journey!

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  • Maire67
    Maire67 Member Posts: 768
    edited May 2018

    Fitztwins. Thanks for the positive story. You are a warrior. Wow what handsome sons. . I remember your name from back in 2005 when I was 3b. Good to see you. Mair

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited May 2018

    thanks for checking in with such a positive and inspiring post. I’m just about to hit my 4 year cancerversary. I was diagnosed stage IV in June of 2014 and I was so scared. I didn’t think I’d still be here 4 years later. But here I am and here you are 10 years under your belt. I am bolstered by stories like yours. Keep popping in from time to time. Maybe you’ll see me celebrating 10 yrs and you’ll be at 16.

    Btw your sons are quite dashing!

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  • jobur
    jobur Member Posts: 726
    edited May 2018

    Fitz~   A week or so ago I was enjoying this delicious sandwich, and of course I thought of you! Checked up on you and saw it had been a long time since you posted. SO happy to see this and know you are still here! 10 years is amazing, lots of ups and downs I'm sure, but so glad you are here to see those young men of yours off to their 1st prom. Love it!

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  • pajim
    pajim Member Posts: 2,785
    edited May 2018

    Janis, CONGRATULATIONS!!!! And here's to many more. Can I be you when I grow up?

    Gorgeous boys btw.

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  • JFL
    JFL Member Posts: 1,947
    edited May 2018

    Janis, great to see your post! You were someone I saw around these boards and remember from when I first joined the club back in 2014. I was pregnant and son is now 3 and a half years old . . . amazing to think yours were 4 and are now 17. Your experience really does give us hope.

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited May 2018

    Thanks for the update! It is always inspiring to hear from the "old-timers". When I was new here, I told myself that I wanted to be one of those old-timers one day and share my experiences too! So glad you are enjoying life and enjoying your handsome sons. You're right, it's not easy, but you're still here! And I hope you will be here for many many more years to come!

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited May 2018

    Oh, Janis, I just looked up ALX148- it is anti-CD47!! How exciting!! I didn't realize it was already in clinical trials, although I've read it synergizes with treatments for HER2 positive cancers in the preclinical work from Stanford.The way this drug was designed will prevent the loss of red blood cells, which was a problem with initial treatments. Please keep us posted how you do in the trial, and if you hear anything else about how the trial is going.

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  • KSkier
    KSkier Member Posts: 467
    edited May 2018

    So nice to hear from you and congratulations! You were the first person I identified with when I first came to the boards since we both had young children. I can't believe those boys are nearly done with High School! I am glad you shared a photo. I think of you every time I consider whether it's time to leave my job, since I so distinctly remember the self reflection and research that you went through when making that choice. Alas, as the the one holding the health insurance it still doesn't quite seem financially feasible for me yet. But, like you, I have been concentrating on the task of living life these past ten years. So glad we're here! Keep it up! KS

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2018

    I remember your profile picture with the boys when they were young!

    Trendy sandwich places are all the rage now in NYC!

    Wishing you the best.

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