Wednesday, June 19, 2013

Tonya is dying...

Well the last time I updated my blog back in March, I had good news...Was hoping to do the same this month, and well, it's even BETTER news.  Just a recap...I started with IV chemotherapy (Methotrexate & Vinblastine) back in August 2012, and went weekly/biweekly for 5 months.  My MRI in December showed an increase in size from the original MRI in May 2012.  So within almost 8 months, the tumor grew 47%. Merrrrrrt :(  I immediately stopped the IV chemotherapy and started the oral chemo - Nexavar (Primarily used for Kidney & Liver Cancer - I take 400mg of Nexavar once daily in the morning on an empty stomach).  There was never a set "time period" of how long my oncologist wanted me on it for - It's the "test and see" approach.  This past March (just about 3 months into taking Nexavar), I had a follow up MRI.  The results showed a 25% decrease in size from the size it was in December of 2012 (and no decrease from the original size in May 2012).  So from the start of taking Nexavar, December 2012 to March of 2013, there was a 25% decrease overall.  I continued on Nexavar for the past 3 months, and I'm now finishing my first 6 months of Nexavar.  

Side Effects:  The last 2-3 months have been the worst medically for me in my life...I have had delayed side effects from the drug - stomach/digestion issues causing weight loss, skin issues, and DRAMATIC hair thinning (to the point where I had to buy a hair piece/wig - her name is Shakira...Not gonna lie...She's pretty awesome).  I've dealt with these side effects as best I can and try to just focus on the positive - the drug is killing this BIOTCH!!!  I even contemplated stopping the medication because of some of these side effects and giving my body a break all together and just monitor the tumor.  I discussed this with my doctor and he said it was my call... 

Last week I had my MRI and found out the results today...Drum roll PLEASE....TONYA IS DYING...My tumor is DRAMATICALLY smaller, and to be EXACT, it's now 81% smaller then it was in December of 2012 (63% smaller then it was originally in May 2012).  Dr Spira, my oncologist, is ecstatic and I can't even begin to describe how I feel right now.  I feel strong, I feel empowered, I feel so many things I can begin to type them all out.  All I know is ANYTHING is worth fighting for and NEVER give up.    

One thing this whole experience has taught me, don't sweat the small stuff.  As bad as you may think you have it, it can ALWAYS be worse.  Always keep smiling!  I definitely will be for awhile!!!

I want to give a couple shout-outs:
  • My PIC Erin - who organized my surprise bday dinner last month and also got many of my friends to donate a combined $500 to the Desmoid Tumor Research Foundation (DTRF).
  • Dawn - For being one of my best friends.  Love my beautiful orchids :) 
  • Donna - For being my rock and keeping it reaaaal! xo
  • All My BFF's - You all know who you are.  Not sure what I'd do without you!
  • My Family - Can't even begin to thank you all for the support you give me! xoxo
  • Ashley - Love my pink Kate Spade Bracelet!  Perfect timing :)
  • Kevin - For getting me some new piiiiiimp "Desmoid Awareness" Bracelets.
  • Myra - My "Mizzle".  The painting you gave me for my bday was one of the best gifts I've ever received. 
I'll leave you with this...

"Life goes on, it gets so heavy
The wheel breaks the butterfly
Every tear a waterfall
In the night the stormy night she'll close her eyes
In the night the stormy night away she'd fly...

And dreams of



  1. Awww...Poor Tanya...SIIIIKE!!!! This whole post gave me the chills. I'm proud and grateful to be your rock and you can lay or lean on me any day. And all your friends and family - You give so much love and it inspires others to give love back. Thank you for that and everything else you've taught all of us.

    "Don't sweat the small stuff...Always keep smiling".


    I love you.

  2. Very happy for you! Thank you for sharing and giving us all hope!

  3. Linds:

    Your continuous, positive energy is inspiration to us all.
    Continue to shine ... inside and out!


  4. Hi Lindsay,
    You don't know me, and I don't know you, but I read your post at the right time! My name is Mandy and I've lived with desmoid tumors since age 15. I'm seen at Memorial Sloan Kettering in NYC for it. Mine are multi focal and spread from my groin to below my knee, calf level. I've had 3 surgeries, been on IV chemo as well, and nothing has worked. I'm seeing a new oncologist at Sloan who suggested Nexavar!! I'm terrified, truly, of doing chemo again. IV chemo was the pits, and I swore to myself that I'd never do it again. :-( the only reason I'm even considering it is that this is oral, and I've read the studies. I'm SOOOOOOO thrilled to read that your tumor shrank so much. I'm close to tears reading it actually. I'd love to connect with you and ask you some more questions about the drug, and your overall experience with Desmoid. It's kinda just nice to know I'm not alone! Hope that thing dies forever!

    1. Mandy,
      My tumors are gluteus to calf (my MRIs are pelvis to ankle), and after almost 2 months I think Nexavar is working for me. I found my first one at age 23 and I'm 38. This is the first time I've had hope (about a possible cure or being tumor-free) in about 10 years.

      Have you heard of the Facebook group The Desmoidian? I just joined and have found it to be so helpful.

      I hope and pray it will work for you too. I've had 2 surgeries (2nd at MSKCC) and 2 rounds of radiation, plus low dose chemo. This is way easier than my past treatments. Still a pain, especially limiting time on my feet - I have 2 little boys! - but I'm so thankful it's working.


    2. Mandy - So thankful you found my blog. I started it to bring more awareness to Desmoids and the treatment for them. After going through IV Chemo myself, I didn't have much hope starting Nexavar. Wasn't sure how the strongest of drugs couldn't shrink this thing, but an oral pill once a day would do the trick. I didn't have a positive attidude going into it, but I tried to stay positive. When after 3 months of taking the pill the tumor shrank 25%, I was ecstatic, and then 81% at 6 months. I mean as we know with these things, no growth is considered success, but shrinkage is another whole level. Feel free to email me at lindsizzle@ and we can exchange info and I'd be happy to connect with you. I also agree with Bree, The Desmoidian fb is helpful. Can be overwhleming at times, but has a lot of info as well.

  5. Lindsey,
    I'm so happy for you! How exciting that Tanya is shrinking so fast! I'm sorry the side effects have been so bad. I'm taking 600mg daily, and continue to deal with hand foot skin reaction (HFSR), but already (7 weeks in) feel that 2 of my current tumors are smaller. I have less tumor-related pain, and despite some nausea and minor hair loss I seem to be tolerating it well. My MRI will be soon, and I'm expecting news similar to yours.

    Thanks for sharing your great news! I'm hoping and praying that this works for me too, and for many other desmoid patients!

    1. Bree - That is AMAZING news! Any reason why they have you on 600mg daily and not 400? Just curious...You've been on it 7 weeks now? When I first started I had a bad face rash which has calmed down over time. I also use the Lindi Skin Care line with helps. You may want to check that out. Definitely helped my skin. Most of the other side effects - Hair Loss and Digestion issues, started around month 3 and got worse over time. I've learned to deal with it, as it's shrinking this damn thing! Hopefully will be able to go back to "real life" at the end of this year. Whatever that means. hehe. Keep me posted on your progress and let me know any questions you may have, as I'm months ahead of you on Nexavar!!!! Best of wishes!!

    2. Hi Lindsey,

      I'm Bree's husband. This post thrills me to no end. We recently had an appointment with our local doctor here in Dallas. When I asked her if we could expect the drug to eradicate Bree's tumors, she smiled this sweet smile and poured cold water over that idea. "The cancer usually finds a way around the treatment. We just hope to buy some years."

      In mind I'm thinking, "Yeah but you don't know about this gal back east who's at 81% now!" So you are our yardstick for progress (no pressure :) ).

      All this is to say hang in there. You're as strong as they come. You have to be to endure this. We hope and pray that at the next MRI, they can't even find the little s.o.b.


  6. Lindsey,
    My docs actually started me on 800mg daily, but after 10
    days the soles of my feet were so inflamed and sore that I literally could not get out of bed to use the bathroom. Brad had to wheel me around the house in an office chair for a day. I was off Nexavar for a week, then took 400mg for one week, then started on 600mg. I would never consider taking 800mg again. 600 is tough, but it's working, so I limit time on my feet, ice my feet often, and take Benadryl before bedtime to help me not itch (my feet can get itchy at times). My stomach does bother me sometimes, and my face is still a little pink all the time, but my labs look great every month, so I don't think I'm more infection-prone at this time. I have lost some hair, and my eyelashes and eyebrows have seriously thinned out, but I can live with that.

    I'll have my 3 MRIs at MDACC next week (3 months after starting Nexavar) so I'm hoping the results will be similar to yours. The mass in my calf is already visibly smaller, and I can zip up my old leather boots (which I couldn't do in the past few years), plus I don't have pain when I sit anymore, so we know they're shrinking - we just want to know how much. :-)

    We'll keep you posted on our good news, and of course we're thrilled that Tonya is on her way out! ;-)