I find it hard coming to this site and not search for survivors that may help my daughter Jaclyn, survive. She survived 26 months. The Votrient 800 mgs each day since December 2012 had stabilized the tumors, even had shrunk some of them. But the doctors focused on the SS and didn't discover the abscess in her pelvic area until it was to late, had turned to gangrene. Jaclyn was a strong fighter to the end. If it hadn't been for the abscess she would still be fighting courageously . No one knows what caused the abscess but we know she had it for a long time. So please everyone get checked thoroughly if you have pain, swelling and warmth that gradually gets worse. Don't give up and keep searching and give support to others, it helps a lot. If I can be of help to any one of you warriors please let me know, I am praying for you all.
So sorry to hear about your daughter Jaclyn, I am sure you are so proud of her for being such a fighter. My thoughts are with you and your family and hope you find some peace.
Love karen xxx
Thank you Karen! I miss Jaclyn so very much.
Lynda, Sorry for the loss of your daughter Jaclyn. I am also fighting the SS demon. I currently have 12 spots in my lungs with the largest being 1.6 cm. May I ask what type of Chemo Jaclyn was taking before she went on the Votrient? Did she also have advance SS in her lungs? Any information you can provide would be helpful. Sorry again for your loss, you and your family will be in my prayers.
Take Care, Glenn
Jaclyn had radiation to the primary tumor on her lower spine/right buttock area and it shrunk the tumor but SS had spread to her lungs. Ifosfimide helped keep the tumors from growing, she did 7 rounds. Next she was on Adriamycin/Doxirubin for 2 months and it didn't stop them from growing so she was put on Gemcidabine and Taxotere for 2 months and tumors were still growing. Her lungs were filled with nodules and one huge mass had grown in her right upper lung. Of course she didn't have insurance and she had a hard time getting Medicaid to start because she was on disability and had to meet an almost 5,000.00 deductible. So for a while she wasn't on anything. December 2012 she began Votrient but her Oncologist said the huge mass, over 4 inches, in her right lung was just to big for Votrient to do anything with. All the others were stable and some had shrunk some. The large mass was pressing on her heart so they had it removed by taking the middle and top lobes of her right lung out in order to get rid of that problem. Jaclyn was suffering more and more with stomach, back and legs pain. Jaclyn only took Votrient for 10 days during July 2013 due to the surgeries she had and hospital stays. Once the Gangrene was discovered we were told her SS cancer was stable from taking the Votrient. But she wasn't able to eat much, mostly drunk ensures so I think she was starving the tumors as well. She lost over 50 pounds from April-September. I know everyone is different, what works for one may not for another. I do hope you get to walking again soon and know that we all care, hang in there and give it all you got. If you would like to know anything else, don't hesitate to ask. I am here for you..Lynda
Lynda, thank you very much for your detailed information about Jaclyn. I plan on using this for my fight with SS. I will start my first round on 16 Oct with only Doxirubin. Maybe because I am 53 years old that they think my body can only handle one drug. I will talk to him again next week, but I want more options than only one drug. Sorry again for the loss of Jaclyn. I will let you know how my battle goes. Take Care, Glenn
Hi Glenn, Please do let me know how your battle goes, think positive that you will beat it. I will have you in my thoughts and prayers. Just to let you know Adriamycin is the same as Doxirubin, one is brand name and one is generic, also I just discovered that I have been spelling it wrong, it spells Doxorubicin. When Jaclyn was on Gemcidabine and taxotere she had one of them one week then both the next week and then skip a week.Good luck! Lynda
I hope you have an experienced Oncologist. Jaclyn was the first synovial sarcoma patient that her Oncologist treated and I hope he learned enough through her to be of more help to others.
Lynda, Someone named Mary Ramsey printed your story about Jaclyn on Facebook. Are you the same person as her? The group is Synovial Sarcoma Support. Glenn
Your love and support for your daughter are unmatched. Thank u for all the support you have given me over the years.